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Category: Endometriosis

Period Story Podcast, Episode 66, Carla Cressy: We Need Better Endometriosis Education

We’re back!

It’s Endometriosis Awareness Month and I’m so pleased to share my conversation with Carla Cressy, the founder and CEO of the Endometriosis Foundation for the first episode of season seven of Period Story.

Carla is a true force in the endometriosis community, helping others gain access to care and support and providing insight into the development of national health guidelines.

In this episode, Carla shares: 

  • How difficult it was to get doctors to take her symptoms seriously
  • How the focus on her bowel issues finally led to an endometriosis diagnosis 
  • Her experience of medical and surgical menopause 
  • How she managed her mental health when the pain was at its worst
  • What she wants doctors to know about endometriosis 

Carla that there’s so much misinformation around endometriosis and that doctors need a better understanding of the patient’s perspective of living with this condition. 

Thank you, Carla!

Get in touch with Carla:

The Endometriosis Foundation Website

The Endometriosis Foundation Instagram

The Endometriosis Foundation Facebook

Instagram


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SHOW TRANSCRIPT

Le’Nise: Hi, Carla. I am so excited to have you on the podcast. I love the work that you’re doing and I’m so thrilled to be able to learn more about your story and learn more about the work that you’re doing with the Endometriosis Foundation. Let’s start off with the question that I ask every guest, which is tell me the story of your very first period. 

Carla: Oh gosh. Now I’ve got to think back. Okay, So I was I was yeah, I was one of the youngest in my year. I think I was 13. And funny enough, I was actually in my lesson scope, which was sex education. And I remember having this horrendous pain. I looked down and there was blood on my chair. So I literally started my period and then in there I grabbed my friend Holly, who sat next to me, ran to the office, sanitary towels, clean myself up, and kind of that was that. And yeah, I just. You know, I’ve got three sisters, so I was kind of quite prepared and kind of knew what to expect and things. But my periods were never quite normal. They would actually come every two weeks from the off. Something that we really thought would just kind of settle down over time. But what didn’t settle down was this horrendous pain. I just had this awful kind of crippling pain that would just see me on the floor on all fours. Like, I just it just wouldn’t it wasn’t getting better. And I was pretty much straight away kind of seeing my GP and saying, you know, this is I was already kind of there for these irregular periods, but for this pain as well, that that wasn’t that wasn’t normal. My mom was quite concerned kind of early on about this kind of pain and these two periods a month, which was just a bit of a nightmare. So, yeah, I just my first period, it wasn’t really a great experience, to be honest, because it just wasn’t something that ever settled down. It was something that I was just continuous. It was just a huge burden and, you know, quite an annoyance in my life at the time. Yeah, I just seemed to feel like I was always was bleeding, never really catch and catching a break. Funny enough, I actually had something they call a false menses as well. So when I was just a few days old, my mum, she was changing my nappy and she noticed that there was I was having a period. I remember she, she was telling me about how she was freaking out and calling the doctor and the midwife and I don’t know how common that is, but I don’t think it’s very common. So yeah, I also experienced a horseman as well. 

Le’Nise: Wow. So you you started your period at 13 in school, in sex education. Quite ironic and it was heavy from the very beginning. 

Carla: It wasn’t so much heavy. It was just that I didn’t really have like clots and things like that. It was just it was just continuous. I mean, it wasn’t heavy, heavy bleeding. It just seemed to feel like it was never stopping. And I’d have quite long periods as well. So I would bleed for maybe 7 to 9 days, whereas my sisters would bleed for like three days or four days, you know. So it was quite kind of obvious to begin with that something wasn’t quite right. But of course you’re young and you just start your period. Things are not going to be as always, perfect from the from the from the, you know, from the get go. So it was something that, you know, we just thought maybe it was settle down and, you know, we’ll see how things go. But it just never, ever settled down. It just just continued and and actually eventually progressed into something a lot worse. 

Le’Nise: So 7 to 9 day periods every two weeks. Was it painful the entire time? 

Carla: Yeah. And the and the pain would actually start before the bleeding would start. So I would have this horrendous kind of rectal pain to the point where I could be just walking and talking and all of a sudden I’m just stopped in my tracks and it just felt like I actually call it the hot poker pain. It just it was just excruciating. But it was constant. It wasn’t something that was going away. So I just knew, okay, this isn’t right. And then at the same time, you’d also get the frontal pain as well. So it was just kind of this big. Oh, it was just a bit of a nightmare, really. And just that 13, 14, especially kind of constantly back and forth to the GP. Lots of ibuprofen.  I was asthmatic as well. I’d had asthma from a baby, so having a lot of kind of NSAIDs would trigger my asthma and I was on all these pumps and oh, it was just yeah, it was just a nuisance really. 

Le’Nise: Yeah. And it’s quite young to be dealing with all of this, although, you know, we think, oh, 13 to 14 it’s, it’s, you’re a teenager but you know, thinking like in the grand scheme of things, having to carry this burden of long periods, frequent periods, very painful periods. It’s so it’s a lot. And I’m just curious, how did the school deal with this or how did they help you deal with this? 

Carla: So the school were very much aware because I did spend a lot of time. We had like a little room next to our school office and we’d always have a nurse there. And she was quite,  always she’d be, oh God, you’re back again. Like, you know, because I would, I wouldn’t, I wouldn’t. At the time I didn’t know that this was a regular thing, so I wouldn’t always be prepared to start bleeding again when I just a week before had a period. So I’d be down there like, Oh my God, I’m bleeding again. And they were quite I mean, they were there. They were kind of involved or asking questions or, you know, showing any concern, but. They were there to help me and give me pills when I needed them and, you know. But yeah, I mean, it was but I think back now, like just to have to deal with that, that that was a lot, you know? Yeah. 

Le’Nise: And then what about your doctor? So you mentioned very frequent trips, lots of ibuprofen then. Couple that with, you know, the effect that that would have on your asthma. What were the conversations like with the doctor? 

Carla: So the doctor, I think they were quite good. I mean, I was, I just turned 14 when they prescribed me my first hormone pill before I was ever sexually active. This was predominantly to help my periods to try and help my periods. And they were, they seemed concerned. I think my mum was more concerned, to be honest, because obviously I’d had I have three sisters, so my mum was quite used to periods and, you know, she knew that something wasn’t wasn’t right. And actually I look back on my doctor’s notes and in 2004 I think I was 14 or 13. She, my doctor had noted and it says Mum worried there’s an underlining issue. So my mom was very much kind of pushing for help with the doctors and they would kind of do this kind of pelvic exam, not internally, but, you know, feeling my abdomen. And yeah, they didn’t really seem too worried. And I mean, I was still very young and, you know, it only really been a year into my period. So it was just something that we to tell, you know, it might settle down, let’s just give it time. 

But then when it got to that one year mark and the pain was getting worse and I started to have like a sickness episode. So I started to become quite sick with the pain and kind of fainting a lot as well. So that’s when they kind of decided to intervene with the with the hormone therapy side. But I mean, after a couple of months, I started getting acne and migraines. And it wasn’t it wasn’t nice. And they decided to send me to see a gynaecologist. So I saw a gynaecologist when I was 14, which was quite scary. I had a internal scan and they just said everything’s normal, it’s fine, and just kind of sent me back to the GP. And then by this point the pain was was pretty intense. It was pretty severe. Days off school, never able to do PE. So yeah, it is, it’s quite, it’s quite a big thing. My periods. Yeah. It’s kind of like in the house. So yeah, it just didn’t, it just didn’t get better. 

By the time actually I reached 17 I had tried seven different hormone pills and they just one like it. Nothing was working. I kind of just blew through the pills, like I wasn’t even taking them. Yeah, it just didn’t seem to help at all. 

Le’Nise: What really I find kind of really surprising is I find it surprising and not surprising, given everything I know about, you know, the way that some doctors can be, is that you had this severe period pain that caused you to miss school, frequent periods. You went to the gynaecologist, they did a scan, an ultrasound, I assume, and then they said everything was normal when everything was clearly not normal. And I just feel a bit indignant on your behalf, like, you know, a young teenager having to deal with all of this. How, did you go back to that gynaecologist? What was the kind of pathway that you were going through, through the medical system when all of this was happening? 

Carla: So something I found really difficult, I think, was once you get that referral to a gynaecologist. I mean, nowadays it’s really difficult to get that remote just to go and see a gynaecologist. But once I’d had that referral and was told everything was okay to get back past the GP to the gynaecologist was so difficult the most it was just the biggest fight and it kind of went on into my early twenties because they’d say, you know, you’ve had these same problems for years. Gynaecologist said it was okay, like just kind of, you know, persevere with the hormone treatments and whatever else. 

So it was so difficult. It actually kind of built this barrier in between, like going to the GP and then seeking out the referral for extra help. So yeah, it just made things so much harder. And by kind of 16, 17, it was obvious I was getting ovarian cysts. My stomach would extend or just extend on one side. I’d have this severe crippling pain. I couldn’t move off the sofa. My mum would go, you know, back to the GP and they just weren’t interested in kind of sending me any further than the GP. So they would just give me, you know, and I’m mefamanic acid, tranexamic acid and everything else, all the kind of usual medications that they would give to a teenager with, you know, prolonged periods and painful periods. But yeah, they just didn’t seem to want to push or. Just let me through. It was really difficult. Really difficult. 

Le’Nise: And while all of this was happening and you were trying to go down a medical route, were you doing any other research on the side to try to figure out what was going on or?

Carla: I mean, I was still fairly young, so I think I was a little bit naive to just believing these doctors, you know, okay. And everything’s fine. I’m going to be okay. Like this is normal for me. They would say to me, This is your normal. You know, everyone is different and this is your normal. 

So I think is probably when I was kind of 20, 21, 22, and I got into my first kind of serious relationship and just having somebody else there to see these kind of periods and these episodes and these patterns was when I started to think, okay, like maybe this is and I mean by by this point I’d kind of got to a stage where with GP’s where I’d kind of given up a little bit because I would go and I’d just be faced with the same, you know, this is your normal, you know, suck it up and you know, periods meant to be painful then they’re not nice thing, you know. So I was just kind of a little bit just done with to keep going to the GP. I just felt like a nuisance. I felt like I was just pestering them, you know. So it got to that stage where I just thought, I’m just not I’m just not going to going to bother going. I’m just going to kind of deal with this as much as I can at home. 

And once I was kind of sexually active and I started to experience this horrendous pain during sex and bleeding during sex and then after sex, just this, I would just be in tears with pain. That’s when I thought, okay, this isn’t this isn’t right. So again, I was kind of back and forth and I’ve changed GPs at this point as well because I moved town. So this was a totally new kind of GP practice and it was a lot different to my kind of GP practice growing up where there was like four or five different GPs in this practice that I could see, so I would never see the same kind of GP twice. So if anything, thinking back, you would think that actually this could be a positive, you know, but it was just horrendous. 

I just couldn’t get past them to see a gynaecologist. I couldn’t get a referral. And once, as I said, once I started to have these kind of other symptoms starting to progress, I started to research. I started to look in on Google like, what is this that was happening with my symptoms? And at that time, I mean, this was ten years ago. Now, endometriosis wasn’t anywhere be seen on on the Internet and all the symptoms were kind of pointing to cervical cancer, you know, this pelvic pain, this irregular bleeding pain during sex. These are all very common or known signs of cervical cancer. So I thought that that’s exactly why I have you know, this is what I’ve had for years. 

So I went to the GP and I said, you know, I have all of these symptoms, as you know. I mean, I couldn’t I’ve lost count how many different hormone pills I tried by this point and I say I want to have a so I want a smear test. I was 21. I said I need to have a smear test because I started to you know, you worry, you panic. And they said, well, you know, we agree. You do have the symptoms, but you are very young. So there’s a chance that we can send the smear test to the lab. But it could be refused because of your age and it was refused three times. So I never got to have a smear test. And my boyfriend at the time, he had come along to appointments and he’d get a little bit kind of annoyed with the GP because, you know, there was clearly something not right. So yeah, they just they just didn’t really seem to be bothered by it. You know, you’re young to worry about this, don’t worry about fertility, you know, you got plenty of time on your hands. So yeah, it just, it was just I just kind of gave up. I just. I just gave up. It was. It was tough. 

Le’Nise: I just find it so stunning when you know, you have if there was any other sort of pain, you know, if you were going to the doctor and you were saying every or the dentist saying, you know, I’m getting this constant pain in my tooth. They would say, okay, you know, we need to have a look at it. But because periods are, pain is normalised messiness is normalised. They were like, Well, that I’m just so stunned that you saw all of those doctors. And they said, Well, that’s your normal when any other pain would be treated differently. I just I very feel very indignant on your behalf. It’s just what I find really interesting, though, is that you and I’ve heard this other from other women with endometriosis is that when they’ve taken their partners with them to the GP, they’ve actually their male partners, they’ve actually had a better response from the GP and the GP have been more receptive to listening and taking the concerns more seriously. Did you find that with when you took your boyfriend at the time? 

Carla: No, I mean, we didn’t get anywhere, so no. 

Le’Nise: Okay. And so then you moved to a changed GP. You had, you know, you had this boyfriend who was, from the sounds of it, very supportive, wanted to help you figure out what was going on. How did you find, what was the impact of the what we now know is endometriosis on your life. You know, early twenties, you’re trying to figure out who you are, you’re in this relationship. What was the impact on your day to day life? 

Carla: It was tough. I worked for a company from kind of 17 to 21. And I did end up leaving. And I wasn’t I wasn’t treated unfairly. They were actually really supportive. And I knew something was, you know, we had quite a good, supportive little team. They knew something wasn’t quite right, but we didn’t quite know what it was. So I was continuously kind of back and forth to having time off. 

And in the end I felt so unreliable because I just when, you know, when I wouldn’t know when I was due on a period and I knew at this point kind of age, 20, 21, these periods would mean that I would be in bed for three or four, three or four days at a time with this pain and sickness and dizziness and passing out. So I left that job and I went into another job. And it was kind of around that time when my relationship broke down. 

And it was around that time in that job that things just really progressed. I mean, every week I was found passed out. I was passing out in the street. I was waking up and people would be around me picking me up off the floor. It just become quite a nightmare. And I remembered that the workplace, they called me into the office and they, I kept going to the GP. And I started to get the bowel symptoms though, because my bowel symptoms, I was just being told it was IBS. So I would kind of be sent home from work. I would see the GP explain everything that was kind of happening, you know, discuss the periods, discuss the bowel symptoms. They never really linked them. But I was always like, I remember I told them, you know, this is worse when I’m bleeding. This is always worse when I’m bleeding. But they just didn’t seem to listen to that. And there wasn’t anyone kind of there piecing, piecing with symptoms together. So I would just be told, you know, if it’s IBS, it’s IBS. I’d go back to work and I’d say it’s IBS. 

So I was actually I remember at the time, I mean, at this I was kind of 22, 23, kind of reaching 24. At this point, I was embarrassed to say that all this kind of commotion and all this drama was caused by IBS. I didn’t really know much about IBS, and I just remember feeling like silly to go back and say, Oh, it’s just it’s just IBS, because that’s what they would say. It’s just IBS. And I was kind of told, you know, maybe you’re best not working here. So I was asked to resign, which I did. 

And yeah, it just took such an impact. And I, I went into modelling. My parents put me into modelling when I was kind of seven or eight, so I’d modelled up until I was 17. And by it by that point I just remember I would be on set or be on shoes, having hair and makeup and I would just be passing out. And I just knew at that point, you know, I just, I can’t continue this. I can’t I’m not reliable. I can’t you know, I can’t go forward with this. So it did take you know, it did have a huge kind of impact, especially in my teenage years, but also kind of early twenties in that kind of stage of not knowing what was wrong. But something was quite terribly wrong. I think when I reached kind of 23 was when things just turned up a notch. And these symptoms were debilitating to the point where I was kind of being taken to hospital by ambulance, just constantly in and out of the hospital with what was what I would say was, oh, what do they call it? A lazy bowel syndrome. So my bowel would just stopped working and I’ve lost loads and loads of way. I was quite slim anyway, but I just couldn’t really eat very much. I couldn’t kind of feeling full would be really painful. Going to the toilet was painful and near enough impossible. Lots of vomiting. And I just remember I was just back and forth to the GP, I was really, really unwell, you know, when when your bowels affected by it. I later found out my bowel was affected by endometriosis. But when you’re suffering these bowel symptoms, it affects every part of your body, you know, from your sleep to your skin, you know, to your emotional kind of health, everything. So I was just went through this two or three years of being really, really poorly and nobody really giving me good enough answers. And I just wasn’t settling for “your bowels lazy”. Like I wasn’t settling. I’d never had a lazy bowel. I was always regular. I always ate well, so I knew that it wasn’t that and I knew it wasn’t IBS because I could I would kind of skim through all these, you know, causes of IBS or, you know, what triggers these symptoms. And it wasn’t anything I was kind of eating as such that was triggering my symptoms. At this time. It was like clockwork. These symptoms would come same time twice a month. 

And also by this point, my bleeding and I was bleeding for two, two weeks more. And one time I actually bled for eight weeks non-stop. And my GP, I remember going to my GP and I was back the whole time. During those eight weeks I was back, back, back, you know, I’m still bleeding. I’m still bleeding. This isn’t right. And they, they she literally said, Are you sure you’ve been bleeding for this long? Like they didn’t believe me. So, yeah, I just, I kind of just had this kind of relationship with the GP where if I really had to go, then I would go. But at times it just wasn’t worth even going there and, you know, being vulnerable and sharing these intimate symptoms. Because a lot of the time it just felt like they were just kind of fighting back in your face and not really. 

Le’Nise: Well, yeah. And you just think now like. What could have been different if they had just believed you if they had just listened to you taking your concerns seriously and just just believed you? 

Carla: I mean, everything I think if I if I was taken seriously, I mean, by the time I was, I think 17, I had probably all but one of the common signs of endometriosis. So if I was diagnosed at 17, which was eight years before I was actually diagnosed, I mean, who knows, Chances are I could have had children by now. I can no longer have children. I may not have ever needed to have a colostomy bag, my bladder reconstructed. You know, this kind of went on so long the whole time this condition was just progressing and getting worse inside of me. And I, I think I think the hardest part actually is knowing is that I knew for so long something was, wasn’t right. I think that’s what that’s the more kind of frustrating the most frustrating kind of part of it all because knowing something’s not right and constantly, you know, going back and forward and asking for help and just being told, you know, it’s normal, you know, And that is that’s what frustrates me the most, because I think not once did I just say, okay, and that was it. Like I was there. I was a regular, I was a pest. I was always, always there and always, you know, trying to get through that door and not just with one GP. This was I probably saw a good eight or nine different GPs, you know, around this time. So it wasn’t just the one. So yeah, I think that’s the most I mean, I think life could potentially be very, very different. 

Le’Nise:Yeah.

Carla: No, it’s it’s. It’s crazy, really. 

Le’Nise: If you think back to I the Below The Belt screening it was last year and you talk thinking about all of how persistent and you know you describe yourself as a pest in the best possible way and I remember on the panel, you know, someone asked this question, you know, how do you get doctors to take you seriously? And one of the doctors on the panel, they she said, oh, you’ve got to be a drama queen. You know, be a drama queen, keep, you know, be persistent. But then you just think about your experience and how you did exactly that. 

Carla: It’s not always. Yeah, I hear I often hear doctors now will say, you know, maybe it takes so long to diagnose because not many people are trying to seek help for it and people think it’s normal. But I know plenty of people with stories so similar to mine where they were continuously back and forth to their to their GPs and, you know, gynaecologists and they just weren’t being heard. And I think a lot of the problems lie in that secondary care, these kind of health care professionals, because they just don’t, they’re just not aware, you know, they may be aware of, in which case they might not understand it. And I remember when I was finally diagnosed, I was in the hospital a lot at this point. I had bladder symptoms. I was, I couldn’t control my bladder. I would, my bowels as well. I couldn’t go to the toilet. I was on 12 laxatives a day prescribed just to help me go to the toilet. Whilst I was figuring out what was going on, I couldn’t eat. I went down. I was I mean, I’d always been like a UK size, like 10 growing up. But at this point I think I was going to 4 to 6 clothes. I was really just I was just so unwell.

It was kind of once things were once I was in the danger zone, I was able to eat and unable to go to the toilet. That’s when the diagnosis come around. But it only really come around because of these bowel symptoms I was having. I don’t think I don’t think these period symptoms would have ever been kind of looked into really, if these bowel symptoms didn’t start in the bladder symptoms and kind of everything else. I was I started to get aura migraines. I didn’t know much about them, but I and you can kind of get different forms of them, different severities of mine. I would kind of collapse. I wouldn’t be out. My sight would go, my hearing would go and my face would go numb and I would almost look like I’m fitting and my friends would think I was having a stroke or something cause I couldn’t feel my tongue. I couldn’t speak. So that was quite a scary period as well. So I had all that going on too, kind of. That was just unlucky, I think. But no one, you know, there was so much going on, but they only really seemed to be focussed on the bowel symptoms and that’s what led to them kind of going inside, doing laparoscopy and finding out what was going on. 

Le’Nise: So it took all of the bowels syndromes symptoms for you to finally get a laparoscopy. Yeah, but at this time I want to just come back to that in a second. But at this time when you know, this was kind of like the peak of all of your symptoms kind of converging and worsening. Were you still living an independent life or how did you have to move back home? 

Carla: Yes, I, I was in another relationship at this point. We were together for three, three and a half years. We were living together and I’d actually trained as a beauty therapist to work from home because I had I couldn’t physically go out to work every day. I just had to do what I could whilst I was at home. So I was kind of managing, but and he was incredibly supportive, but it was so tough. I remember I would run a scorching hot bath and I would sit in this bath in between my clients just to kind of ease the pain. I would scald my back and my abdomen like just all across my tummy just to kind of relieve this pain. I was on pain medications. Like clockwork. But nothing seemed. Nothing seemed to me to be helping. 

My friends would come over and they would literally would spend a Friday night with them just sitting next to the bath, just talking to me while I’m in the bath, because I couldn’t physically get away from the heat. Because as soon as I take the heat off, the pain was just there and I couldn’t seem to find a way to. Just get, catch a break from this pain. So I was taking him for a laparoscopy and they said that I had stage two endometriosis. My ovaries were kissing, which means that the ovaries, are kind of stuck together by scar tissue. And they said they saw some spots of endometriosis on my bowel. That is nothing to worry about and I shouldn’t think about fertility. I was still so young. And that was it. I was kind of. So that was it. You know, go home. I wasn’t given any information. I couldn’t even say the word endometriosis . I didn’t even just remember calling my mom sign up and diagnosed. So it began with a don’t really know what it is. And yeah, that was it. I went home. And they gave me a report the surgery they had done ablation. So yeah, they kind of just like lasered off whatever they could see. 

Sent me home, fitted a coil. Within a week, I was still in excruciating pain. The symptoms did not go away. I was back in the hospital. Back to the GP. Something’s not right. Da da da da da. And they just kept telling me, you know, just let things go down. Let the coil settle down. I was just bleeding. I was bleeding quite heavily at this point as well. Heavier. And it just didn’t seem to get better. And it was almost like that surgery made me worse. Things was after that surgery. So, yeah, I just went on for a few more months, still seeing the GP and also a few hospital stints as well with the bowel symptoms and things. But it just wasn’t getting better. I was just still exactly the same, if not worse. 

And with six months after that surgery, I was back in the hospital. I was rushed in with suspected appendicitis, even though I told them it’s my endometriosis pain. I’m so used to this. They took my appendix out, realised that it wasn’t the appendix causing the pain. A few days later they took me back into surgery and they kind of done like an open surgery and found I had stage four endometriosis and frozen pelvis and they had to, they had to drain two and a half litres of blood from my pelvis. had a lot of these cysts over these past few years as well. So I was, I don’t know what, how or what happened there, but that’s when they kind of found everything. And see, I don’t really know how or what happened with this first initial surgery and how they missed so much.  Yeah, I just I don’t know. 

Le’Nise: When you had that first surgery and then when you went back to have the second surgery, were they you know, it was the open surgery. They found that you actually had stage four endometriosis. Were you with different surgeons? 

Carla: Yeah. So the first surgery was kind of by my home. That was my local hospital. But I was kind of going in between two local hospitals at the time because often I’d go to A&E and they had to send me home with morphine and I’d say, okay, great, but that’s just going to help for like an hour. Like, this needs to be, you know, investigated. 

And the GP was still very kind of dismissive and not too kind of interested in helping there. So when I went to go and visit my mom. It was her local hospital, that I went to and had this kind of big surgery. And thank God, because I was so poorly, I mean when I when the after they took my appendix out, well before she took my appendix out, I think I spent a night or two in there. I was septic and I had like I couldn’t stop being sick. So I had tubes kind of up my nose, down my throat and tubes everywhere. And I mean, the first thing they thought it was appendicitis. I had the abdominal pain. But once they took that out. And they decided to go take me back into surgery. At that point I was like, What are you doing? I mean, there was one time I said, I, am I going to do this? We didn’t know what it was at this point, you know, why am I? What’s happening? My infection levels are through the roof. And there was a couple of points where it was a little bit touch and go. Was I well enough to go into another surgery? But they had to go in, they wanted to, you know, find out what was causing all of this. And it got to a stage where this kind of acid that I was bringing up for being sick was so hot. I had like kind of thrush around my mouth and my tongue, and it was quite a terrible time. 

Once they put the tubes down in my nose and down my throat, they were syringing the contents of my stomach, through my nose, through the tube, in my nose. So we was having to do like daily syringes for this kind of poison, whatever it was. So, yeah, it was quite a dramatic, scary time. And I was kind of aware and awake the whole through the whole kind of ordeal. So it was, um, it was something I never, ever gonna have to go through again. So once they kind of done that surgery and found how bad it was, they took the coil out that wasn’t working anyway, and they referred me to a specialist hospital in London. I had about a year wait. 

So in the meantime they advised me to call their physio, their Women’s Health Physiotherapy department. And this was in 2016. It’s actually not that long ago, but not too long ago. And I remember I called them and I said, Oh, I’ve just been had this surgery over at the main hospital they told me to call you. I have stage four endometriosis and frozen pelvis. They’ve asked me to come and have some physiotherapy just to help me, whilst I  wait for this referral and I remember the woman, she said endometriosis. I said yeah. And she said, oh we don’t do anything about bad periods. And that was that. And then kind of during that time I had a few kind of pain attacks where I’d go into the A&E at this hospital, I was staying with my mum now and I would get rushed in and all these gynaecologists would rush around and I’d say, Oh, I have endometriosis. 

And these I mean I appreciate their honesty, but they would, they actually would say to me and my mum, we don’t actually know much about that. So it was, it was just a crazy moment to think, oh like what is this? And it was almost like it was rare. And I know that you mentioned one of the articles from the Daily Mail when when my story first went out. If you look at all of these articles, it says rare disease, rare illness. It was so rare. But it’s it’s no, it’s. 

Le’Nise: No, no, it’s not. 

Carla: It was just bizarre to know for me to know how many other people were suffering. But yeah, everybody was like, you know, what is this? It’s so rare. You’re so young to have this. It’s not like it’s very common. It was it was a scary time because the people that I was going to for help couldn’t couldn’t help me, didn’t know how to help me. So it was, it was Yeah. Some was just quite a bizarre time. 

Le’Nise: Yeah. And when you had when you had that open surgery and they discovered that you had frozen pelvis disease which is where the uterus, the bowel, the fallopian tubes and the ovaries, they’re all fused together by scar tissue. Did they do any did they separate them, Did they do anything there?

Carla: I was so the bladder and the bowel was also fused as well. So they kind of just drained all the blood and they just kind of left me. They actually stapled me up. So I had staples, which wasn’t was very nice. So they kind of just left me like that and referred me on to a specialist centre. And I managed, I went to the specialist centre in 2017 and even then it was a year wait, considering how bad things were, it was a year wait to be to be seen. So yeah, I think I spent about four months in bed. I couldn’t move and because I had the staples, like I couldn’t lift anything, I couldn’t do anything. And I had those in for a good few weeks as well. So I was just having to I was prescribed really strong pain medications, morphine and tramadol, and I was just literally stuck in bed like it was just the worst time. It’s just horrible, horrible time. 

Le’Nise: Can you talk a little bit about the impact of all of this on your mental health? 

Carla: Yeah, I think. I don’t know. I mean. I’ve always and I’ve always been quite proactive in, you know, just being persistent and finding out what is going on. But I think once that happened, I mean, that it almost had an effect later on. 

So it wasn’t until I mean, in the moment I was like, you know, we’re going to do this is going to put more weight on. We’re going to eat. What can I eat? You know, what’s going to eat? What can I eat? What’s going to make me feel well, so I was very proactive in getting better because I’m to just to be restrained and stop. Like, I would literally have to roll out of bed onto the floor up the wall to stand up like it was. It was a lot. So I was just very much focussed on getting better and just looking into the condition. 

So I think at that time I just kind of blocked,  somehow blocked out my emotions and just delved into research for endometriosis and that was when I came across the Endo March, which was started by Professor Cameron Nezhat, and I was kind of invited to Stanford, like I was kind of doing all this advocacy work at that time, which probably wasn’t the best thing to do, but it was just my way, I think, of kind of coping and blocking that out. 

But later on I found that I kind of started to develop this panic, panic attacks, severe anxiety over the thought of going into surgery. And it wasn’t that I was thinking about that operation. It wasn’t that I was having flashbacks. It was just I would constantly worry what’s if something is going to go wrong? And then it kind of took over to the point where it even just getting in a car with my friend, I would panic and I would be very alert in the car. It like I couldn’t just relax and I was just in this kind of constant fight moord and that’s something that I, I kind of probably went through the last three or four years that it’s been something that’s been quite a big part of my life. This kind of anxiety and panic disorder. Yeah, it kind of almost it had this affect later on, it seemed. 

Le’Nise: And so we’re just thinking about the timeline where you were finally diagnosed. Stewart had these surgeries. You were then on this wait list to to then go to a specialist hospital in London. Can you then tell us where you went from there? What happened? What happened next? 

Carla: Yes. I mean, I never I’d never heard of endometriosis. I never knew a specialist hospital existed. This was to me, it was just like a whole new world, you know? And I remember my first appointment was with Oliver O’Donovan, who’s now actually one of the trustees for the foundation. He was so lovely. And I just I walked into this, like, waiting room and just met all the people that were there for endometriosis. So it is kind of my first time in real person, kind of talking to other people with it, which was crazy because I felt like I was just this abnormal person for such a long time. And then when I met Ollie and he everything I said, he just he knew, he understood. He’d heard it 100 million times and it was just a breath of fresh air. 

And I remember I had, you know, the scans and the exams on the day. It’s a really long appointment. My mum’s with me and I think it’s 4, 4 hours long. So it was quite an intense appointment. And yeah, they kind of scheduled, scheduled me in to have another laparoscopy. But this was one, a laparoscopy to just go in and take a look to, then plan a further surgery with kind of the multidisciplinary team. So I’d have a urologist and a kind of rectal surgeon kind of gynaecologist combined. So yeah, I went, I went ahead and I had this surgery with them and the kind of. Now what come of that was the. It was pretty severe. They couldn’t kind of locate one of my ovaries, they couldn’t locate my fallopian tubes. It was some scar tissue kind of stuck down and twisted. And my bowel had double looped and it was twisted. And the kind of deep endometriosis in parts of my bowel, my blood, my ureters. So they were at that time they were planning to do this though, I mean fertility for me was something that I was really, really kind of stressed out about. And at this after that surgery, they said, okay, so we’re going to plan another surgery. And I mean, it’s difficult and this is a problem with endometriosis that I found. You don’t always know the outcome, what the outcome of the surgery is going to be and just it’s that unknown and that kind of panic. 

And they at the time were planning to go in and remove both my fallopian tubes and possibly an ovary. I had a lot of the ovarian endometriomas as so my ovaries weren’t kind of great, both of them. But one was doing a little bit better than the other. So obviously with this kind of pregnancy, your chances of having a biological child, I would then need to go through IVF. So during that time I went away and I managed to freeze my eggs. But in that kind of time that I was put into a medical menopause. So I came off of the medical menopause when I froze my eggs, which wasn’t great. They couldn’t get to one of my ovaries. So we was only working from one, which was the bad ovary, which is just. Typical. So I first of all, I mean, it’s not great. It’s not many, but, you know, you only need one, so positive. 

And then I went back to have a surgery. But during that, during the time after freezing my eggs and then waiting for this surgery, I could tell it my symptoms that things were progressing. And I was totally I couldn’t work, I couldn’t do anything. So I kind of went back and I said, you know, things are progressing on now. My bladder symptoms were a lot more troubling. I mean, they were troubling before, but now, like, I couldn’t I couldn’t empty my bladder very well. I’d try and, you know, go to the toilet and I kind of go back like three, four, five times just to have a wee, I’d usually have that in one sitting. I was going five, five, six times just to be able to empty my bladder at one time and my bowel symptoms. But they were just horrendous. I was living on laxatives, softeners daily. 

By the time I actually went to that specialist centre, I was managed to eat one crumpet a day and  that’s when I was eating because I couldn’t physically eat. So I was pretty unwell and. They have done all these scans again, all these tests and MRIs, and they found that the whether the endometriosis had gone into the back of my bowel, it fused about the back of my uterus. So I didn’t have adenomyosis, which is kind of the uterus. But the endometriosis had actually fused and grown through the back of my uterus, which after loads of kind of, you know, investigations and things, they were certain that I could not carry a baby to full term and the chances of me miscarriaging were very, very, very high. So that’s when we had the multidisciplinary meetings and it was decided the hysterectomies was the kind of next step in the best step for me. Yeah, that was. Quite a big change around. 

Le’Nise: Yeah. And so there’s all the physical changes that are that happen with a hysterectomy. And then there’s a mental side of it as well. And then there’s also going into surgical menopause. So it’s a lot for you to deal with. 

Carla: There was a lot kind of going on in a short space of time. By the time I’d had the hysterectomies, it was my seventh operation within four years. Like, there was just it was just so full on and there was just a lot happening. I don’t even think I had a moment to think about what was going on, because the minute I’d finish a hospital appointment, I was getting a new one emailed through to me for then the following week or, you know, like it was just so, so long. 

Le’Nise: You went into surgical menopause at 29. So very young. And can you just talk a little bit about your experience of surgical menopause? So no longer having a period, which I would imagine for you is was a very positive thing in the sense that there was you no longer had to deal with the pain, the potential anaemia, the lack of energy. But then there’s the fertility side where there would have been that kind of mourning for not being able to physically carry a child yourself. So can you just talk a little bit about that? 

Carla: Yeah, I think I had a real, I’ll start with actually the medical menopause because I had a real awful experience with that. And it was almost like a love hate relationship because although I hated the idea of the medication, because of the side effects and because of the risks, there was no other medication available and still not, that would stop my periods. And actually I would have to take I was on Prostap, which is known as Lupron in the U.S. and I would actually switch between Prostap and Zoladex and I would have to have the injections alongside taking Norethisterone which is a progesterone three times a day just to stop my bleeding. And sometimes that wouldn’t even stop my bleeding. So I was just constantly, constantly bleeding. Such as you said, no energy getting so tired and just exhausted and drained, unwell. 

But I had to persevere with that and kind of. Otherwise, I couldn’t physically or I couldn’t really get out of bed much anyway. But it was just harder to do anything. And I had terrible symptoms, really quite terrible. I wouldn’t just have hot flashes, I would have hot sweats. So I would just be sat there for any fine one minute and the next I would be dripping, my hair would be going curly where it was just drenched. I would just drip from head to toe. My clothes would be soaking a hundred times a day constantly. I had terrible insomnia. I couldn’t sleep just this low, low mood. I had no mood. I just felt blank. I felt no emotion. It was just the most, the strangest feeling. I’m really quite a sensitive and emotional person, naturally. So to have this mood where you just don’t feel anything, it was quite scary. It was quite a dark place to be. Sleep, the insomnia was crippling. I mean, I at one time I went three whole days with no sleep because I just gave up trying to get to sleep. It was that bad. 

Le’Nise: Oh, my goodness. 

Carla:And by the time I’d kind of got my referral to sleep therapy for my GP, I’d just kind of got someplace where I was managing like four or 5 hours. So I just I just continued to do work like mindfulness meditation and all of these amazing things. Um, yeah, it, it was, it was really tough. But I also developed and this is the reason why I think they kind of recommend this treatment’s for only six months use at a time. I ended up taking it for two and a half years because I had no, no other option available in between surgeries and things, osteoporosis. 

So I developed osteoporosis in three parts of my jaw, so it’s affected my teeth, pain. It wasn’t nice. So I already had this kind of a little bit of anxiety about going into surgical menopause because I was worried that it would be like that. But actually, even though surgical menopause is not great, it’s not nice, it’s difficult, it’s hard. It hasn’t been as bad as what that was. So I’m quite happy about that. 

But as you said, it’s you know, it’s a relief not to have periods. And also I felt like where everything was left for so long and it took so long to get diagnosed and things had progressed so badly. I was worried about, you know, the the cervical cancer or a uterine cancer or ovarian cancer, you know, all of these kind of potential risks, risk factors of being a woman and how toxic things were. I always kind of had that little bit of a fear of finding out more further news. Yeah. 

So when I had my hysterectomy, I had a total hysterectomy. So they removed they actually called it a radical, they called it a pelvic clearance surgery. So they just removed everything, my cervix, everything. And it does it does feel as a relief now to know that I don’t have to worry now about, you know, ovarian or cervical, uterine, you know, these kind of cancers, which is something that did kind of play on my mind when I knew that things were kind of frozen pelvis and there was all this, you know, horrible, horrible things going on in there. So it is quite a relief. And as you said, not to have periods is lovely. But just with surgical menopause, you then get other symptoms and I think. 

I’m very grateful for HRT, so I wasn’t allowed HRT when I was in medical menopause. So that has helped me hugely. And I have kind of spoken with Dr. Louise Newson from the Menopause charity a few times, and she’s kind of helped guide me in getting my doses right and my specialist has been great and he just kind of takes but lets me take the lead and just listens to anything that I need or so that’s been really helpful. But it has some I mean, I’m constantly tired, brain farts all the time and the things and saying, well, you know, go off on a tangent about something and then I forget where I am, but it’s just something that I’m kind of getting used to. And you do seem to kind of with the HRT and all of these and, you know, other kind of coping tools and it does seem to be getting better. But yeah, it’s just been it’s been a huge transition. It’s been a lot. So I’m still kind of finding my way with it and they’re just learning to just kind of manage day to day and understand it a little bit better as well because I’m not up until probably quite recently, there wasn’t much information or awareness about the menopause or endometriosis. So again, it’s really just finding out more about it and just learning as you go. 

Le’Nise: What I find quite remarkable is that you you’ve had this very intense, life changing experience and that you’ve then gone on to continue the advocacy work that you started for yourself on behalf of others in founding the Endometriosis Foundation. Can you talk a little bit about what what drove you to start this charity and talk a little bit about the work that the charity does? 

Carla: Yes, I. I mean, I never planned to set up a charity. It was never something I ever thought I’d ever be doing. And it really started with setting up a support group. At the time, my kind of story had just been shared in the news, and I just found I had all these people coming, like, getting in touch with me. And they were going through the same thing or worse. So, you know, I just I was overwhelmed by how many people were going through this and the struggles and the complexities that they were faced with and the barriers in health care. And I just couldn’t. It was, as I said, overwhelming just to hear how widespread this problem is and still is. 

And it was kind of it kind of led from the support group. I started a campaign. So I thought if I knew about this when I was younger, if I just sat in a GP surgery read a leaflet, listing all the symptoms, life could have been so different. So I started a campaign and I raised to raise awareness in schools, and it was my local MP, Sir David Amess, who sadly passed away last year, who kind of took my campaign and waved around in Parliament. And from that we registered the Endometriosis All-Party Parliamentary Group, and then about a year later they included endometriosis in the school curriculum, which is amazing, but still not enough. 

I feel I feel like we need to do a lot more because it’s still so unheard of and you know how many students who listen in those listening, you know, it’s it’s something that I think has such a personal kind of touch to it. People really don’t. And I find people just don’t understand unless they kind of go through or, you know, care or close with someone is going through it. It’s so difficult to even fathom what, you know, it can just affect every part of your life, you know. So I then decided I was kind of reaching out to other organisations and just seeing what people were doing and how they were helping, and I just didn’t seem much available. I just felt like there just wasn’t anything helpful to me other than a support group, which was essentially run by people like me who who had it. 

So I just knew that there was this big gap in support and care and this huge kind of grey area that no one was still no one’s filling to really make this kind of change. Because now that this I mean, this support group that I set up in, I think it’s 2018, it helps like 10,000 people now. And I just and we see it day in, day out. People are going through exactly what I went through, what someone else went through. And you just see and it’s just not getting, the awareness is increasing. Yes. But the care is still this is still the same. And actually it’s it’s probably worse because these waiting is now ahead in not two, three years long for a waiting list to see a specialist. And that’s just to see the specialist, you know, and you then have to wait and have MRIs, then you have to wait and then you have to have MDT meetings and you wait and then you have surgery. There’s this real long, lengthy kind of waits for treatment that. I remember when I was sent to a specialist hospital. The waiting a year was tough. Like then. If I had to wait three years physically, I wouldn’t have been able to cope and mentally I probably wouldn’t be here today. 

So I think that there’s a huge problem there and we need something, someone to really just champion that and just push for change. So I set up the Endometriosis Foundation in 2018. I was doing really, really poorly, so I didn’t plan to kind of go forward with the charity or launch charity or anything like that for a little while. Just wanted to get my surgeries and my health. I had to prioritise my health basically. So we actually launch in March of this year and our kind of main kind of areas are education, you know, awareness of course, and campaigning and support and also information is a huge area because there’s so much misinformation around. There’s so many kind of false claims that, you know, pregnancy will fix a hysterectomy or fix it. And just all of these different, just wrong information. And just this I just find a lot of things, a lot of information is contradicting and it’s confusing. And that’s like that’s that needs to be fixed. So, yeah, we’re coming from a kind of approach where, you know, we’re just starting from the bottom and just we’re just going to work our way through and, you know, hopefully just be there and help as many people as we possibly can. 

Le’Nise: I think what you’re doing is amazing and it’s so needed. And I know you continue to help so many people with endometriosis, but also help people learn about endometriosis and that education piece. What I’m really curious about is what do you want doctors to know about endometriosis and how do you think they should learn about endometriosis? 

Carla: I think that it really because of this this problem, it’s it’s got to have a patient’s perspective on it. It just it doesn’t work just from a textbook, you know? So I think that just bringing that real life and that real kind of experience in front of them, because a lot of the time, I mean, I’ve met specialists and they haven’t been aware and they’re there to consult with me, but they’re not actually aware of my history or they’re not aware of my symptoms or they know I’m there because I’ve got, you know, based on this listed, but they don’t know how that actually affects me and they don’t ask how that affects. Like, they know I’m there and I need surgery. That’s that’s all they kind of need to know. So I think that just kind of educating them and, you know, just reminding them that we are human beings, you know, this is our life. And actually a ten minute appointment with a specialist, somebody is waiting up to three years for could change their life, could deliver them news, good or bad. Life changing news. And that appointment is something that’s been anticipated and perhaps there’s been, you know, a build-up of anxiety or fear or worry, you know, around this appointment for such a long time. And if that patient goes in and feels disappointed or feels like, you know, they just doesn’t feel comfortable asking the questions that they’re there to ask, that’s disappointing. 

 And this is why I think, you know, especially kind of in the specialist centres and things like that, I mean, it’s amazing to have, but I think it’s just reminding them of, you know, how precious these appointments are and they’re not easy to get, you know, to get that referrals. The chances are the person that comes through that door has probably been trying to get to that door for, you know, well, seven or eight years. And it’s just being mindful of that. 

Le’Nise: Well, I mean, I’m I’m really so grateful for you sharing your story today. And I know listeners will want to find out more about what you’re doing, where can they find you? 

Carla: And so we our website is the Endometriosis Foundation. So yeah, we have a, if they subscribe, this will be we’ve just launched our little blog and things. So yeah, I mean we’re very much in the early stages, but we’ve got some great specialists involved and patients, you know, it’s just, it’s amazing. So we’re, we’re starting out. So yeah, it’s exciting. We can share our journey with them and just kind of keep in the loop of what we’re up to. And as you know, we’ve partnered recently with Parla and Holland and Barrett, so we’re doing an event together in a few weeks, so that’s exciting. 

So yeah, there’s, there’s a lot going on and it’s it’s just so nice to bring also that kind of more. The other approach, you know, with nutrition and mindfulness and all things I really love and enjoy that help me and just bring that to life through the charity to other people. Because these things, they’re not these coping tools, They’re not talked about, they’re not spoken about and not recommended. These are things that we could be doing from home by ourselves and know for me, I had to learn the hard way. I had to learn, you know, I had a quite difficult time learning, you know, what to eat, what I could and not what I could and couldn’t eat, but just what what foods would make me feel unwell and how best to, you know, instead of just not at all, which I done a lot of the times because I just couldn’t find the energy to figure out, you know, what can I you know, it was it was I was already exhausted. I was chasing doctors and it was just draining and just having kind of that area as well, bringing that through, the charity. I just think I’m excited for them. Just. Yes. Amazing. 

Le’Nise: Well, thank you so much for coming on this show and sharing your story. I am just so excited to get this episode out out there and for people to learn more about endometriosis and for someone who is really young, if they’re listening or someone who who is a mum to someone who might have endometriosis to be able to get help early and advocate. So thank you so much for your time and for coming on the show. 

Carla: Thank you for having me. 

Let’s Talk About Endometriosis!

March is Endometriosis awareness month here in the UK, so let’s talk about this condition that affects 1 in 10 women. 

Something I continue to find shocking is how long it can take to receive a formal endometriosis diagnosis. The average is between 7 – 10 years! 

The only way at the present to receive a formal diagnosis is through an excision surgery, which is the gold standard for a diagnosis. This is a laparoscopic keyhole surgery done by an endometriosis specialist that provides confirmation of endometrial lesions and adhesions. For some, a laparoscopy can be a ‘fresh start’ that allows many adhesions and lesions to be removed. This can then give them the opportunity to address the gut and inflammation issues that can exacerbate many of the symptoms of endometriosis. 

What’s really interesting is that some choose not to have a laparoscopy because they feel that they do not need to have a formal diagnosis to address their endometriosis and its symptoms. They have a clear view on what’s going on for them and have agreed, along with their doctor or consultant, that the issues are likely to be caused by endometriosis, rather than another similar condition such as IBS, adenomyosis, pelvic inflammatory disease, interstitial cystitis or benign ovarian cysts. 

If you’re not sure what endometriosis is, let’s back up a minute and get into that!

In endometriosis, cells similar to those that normally stay in the lining of the womb are also found in different parts of the body, such as the abdomen, bowels, bladder, legs and sometimes even the nose and lungs. These cells form endometrial tissue which become problematic because they inflame and shed every menstrual cycle along with the lining of the uterus. When it is outside of the uterus, this tissue has nowhere to go, which can result in pain, additional inflammation and eventually scarring.

Some of the symptoms of endometriosis include painful periods, abdominal bloating (endo belly), painful urination and / or bowel movements, brain fog, diarrhoea, heavy periods, pelvic pain, painful sex, constipation, diarrhoea and depression. 

Some of you may have heard from your GPs that “you should get pregnant because that will cure endometriosis”. Aside from the pure absurdity of using pregnancy as a treatment for a serious medical condition, the reality is that pregnancy can only provide a temporary relief from pain and other endometriosis symptoms until periods return post-partum. 

Others may have been told that a hysterectomy, a full or partial removal of the uterus, ovaries and Fallopian tubes, will cure endometriosis. Unfortunately, this is not true because as I described above, the cells similar to those that grow in the uterus can also grow in different parts of the body. 

In my next post, I’ll talk through different ways nutrition, supplements and lifestyle can support and reduce the symptoms of endometriosis. 

Photo by Danie Franco on Unsplash


Le’Nise Brothers is a yoga teacher and registered nutritionist, mBANT, mCNHC, specialising in women’s health, hormones and the menstrual cycle. She is also the host of the Period Story Podcast, which aims to break taboos around menstrual health and hormones. 

Le’Nise has helped hundreds of women improve their menstrual and hormone health through her private practice and group programmes, talks and workshops for the likes of Stylist, Channel 4, Boden, Ebay and TikTok and her Instagram page. Le’Nise works primarily with women who feel like they’re being ruled by their sugar cravings, mood swings and hormonal acne & bloating. They want to get to grips with heavy, missing, irregular & painful periods, fibroids, PMS, PCOS, endometriosis, post-natal depletion and perimenopause. 

Her first book You Can Have A Better Period was released in March 2022. 

Period Story Podcast, Episode 37: Lee Nguni, You Really Have To Trust And Believe What Your Body Is Telling You

I can’t wait for you all to hear my powerful conversation with Lee Nguni, a yoga teacher and medical herbalist in training. I’m so grateful to Lee for sharing her 10 year journey to getting an endometriosis diagnosis, how she was forced to learn how to advocate for herself with healthcare professionals, the medical gaslighting she had to deal with and of course, the story of her first period.

Lee says that she was very excited to get her period because she felt that it would be one of the defining moments of adolescence and ultimately, becoming a grown up. Lee shared that because the women in her family had had difficult periods, she expected that that would be her experience too.

In her 20s, Lee’s periods started to become much more painful and began to affect her quality of life. She said that each time she went to the doctor, they were very dismissive, tell her that what she was experiencing was just part of being a woman and telling her to go onto hormonal contraception.

Lee started to investigate alternative forms of healing and began to educate herself on what could be happening to her as a way of advocating for herself with healthcare professionals. Listen to hear the approach Lee finally had to take in order for her doctors to take what she was telling them seriously.

After 10 years (!!!), Lee finally had a laparoscopy that diagnosed her with stage 4 endometriosis. Lee shares the medical gaslighting she experienced and what she happened after her most recent surgery.

Lee spoke really frankly about her experiences and says that doctors need work more collaboratively with patients in order to bring about the ideal result. Lee says that we really have to trust and believe what our body, heart and mind are telling us and that textbook medical knowledge can never undercut personal experience. Thank you so much, Lee!

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LEE’S BIO

Lee is a yoga teacher, medical herbalist in training and a self described explorer of healing landscapes and tradition. 

She believes in the transformative power of movement as medicine and is inspired to share nourishing and restorative practises, as a means to empower individual and communal vitality, through explorations of mind / body, with the help of  the yogic tradition and our often neglected herbal heritage.

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SHOW TRANSCRIPT

Le’Nise: Welcome to the show. I’m really excited to have you on the show because I know that you have quite a story to tell us and it’s an ongoing journey for you. So let’s get into it, if you could tell us the story of your very first period. 

Lee: So my very first period, I was I think I must have been 12 or. Yeah, I think I was 12. And for me, I already felt like I was the last person on Earth to get a period. And what was so frustrating about it was I’ve been waiting for it since I was like since I found out what they were, which was maybe when I was like seven or eight, I was one of those little girls who always maybe knew a little bit more than everybody else. 

I read a lot and I was really excited for everything that comes along with getting older, going through puberty. And I felt like getting your period was one of, if not the biggest defining moments of your moving into adolescence and ultimately becoming a grown up, which was something I was super excited to do. So at the time I lived with my dad, I grew up with my dad and I’m the only girl in my family. So it was just me and my brothers and I lived with my dad and I’d been waiting and waiting and waiting to get this period. And I felt like everybody else at school had one. And I think I probably even lied that I already had it. 

So I was like, where is it? 

And when it finally came, it was a bit of a. I really expected that I would know that it was here and it just wasn’t what I expected at all. So I and a few days prior, basically before it actually came, every single time I had any kind of stomach disturbance, be it nausea, be it like any kind of stomach issue at all, I’d be like, oh, my God, is this it? So a few days before, I had a stomach pain that I’d never kind of had before. And at this time, for whatever reason, it didn’t occur to me that this could be it. And that kind of happened for a few days. And then on the day it actually came, I got up and I went to the bathroom to use the toilet. And I remember like pulling my pants down to have a wee. And I was like, oh, my goodness, because it also didn’t look like blood. It looked like, like a brown discharge. So I was like, is this it? Is this not it? And I didn’t live with my mother. There wasn’t a woman in the house for me to confirm with. And this is before the Internet was just like a thing that everybody had in their houses. We had the Internet, but it was dial up and it was like a whole production. You had to convince somebody to get off the phone for you to get on the Internet. I couldn’t just, like, grab my phone and quickly Google what does a first period look like? So I was like having this moment where I was like, very excited, like, oh, my God, I think this is a period, but also very underwhelmed because I was like, but it doesn’t look like a period and it really just doesn’t feel like a period. And who can confirm for me? And we didn’t have, we had like a mobile phone, but this is ages ago. So it was like a mobile phone that I shared with my older brother and my younger brother. And I remember having to like, first thing because it was summer holidays, having to go into my older brother’s room first thing in the morning and be like, I really need the phone, please give me the phone. And he was like, “Why?” I and I had to tell him, because I think I’m having my period, but I don’t know. And then he was like also really like, “how do we find out? What are we going to do? Where can we look?” And trying to find like books that maybe had information about it going through this whole, like, investigative process. Twelve year old me and my 14 year old brother trying to do the investigative work. And then in the end, we decided that we would ring an aunty of mine because my dad was at work and I think I tried to ring him anyway, but I don’t think I was able to get a hold of him. So in the end, we decided to bring an aunty of mine and I explained everything to her. And she was like, “Yeah, I guess it sounds like this is it.” But there was no like nobody else seemed excited about it the way that I was excited about it, so that was a little bit disappointing to me. I think my my aunt phoned my dad to explain to him that I’d started my period and he came home and he looked a little bit freaked out, but nobody, like, celebrated it. And I kind of always felt like maybe if I lived with my mom, she would have been like, I don’t know, did other people have period parties?

I felt like everybody else was having like these huge celebrations and welcoming into, like being a woman that I didn’t have. But I was just always really excited to get it. So maybe in my mind I made it this bigger thing than it actually was going to ever be. 

Le’Nise: Well, you know, you’re not you’re you’re you’re definitely not alone in your period, not really being celebrated, because if I think about the people that I’ve spoken to on the show. I’d say probably about one percent of the women had some sort of celebration and some of the celebrations they were happy about, like it was like a cake or maybe a little party or. And the others were not happy. They were really embarrassed. But their mom or their auntie or whoever the female figure was in their life really wanted to make a big, a big celebration of it. So, yeah, I don’t think it’s as I feel like it might not be as common as perhaps it may be used to be. But I think it should be a thing because it’s a really momentous occasion. 

Lee: This is what I’ve always kind of felt about it. And I think that I, I used to read a lot of my my mother’s Cosmo magazines when I was really young, like when I was like from basically when I could read, I was always in my mom’s magazines and reading about women’s things. And my mother has six sisters, so there’s seven girls in her family. And quite often when my parents were living together, quite often I had lots of aunties in the house and whenever anybody had a period, they were always talking about it as though it was a difficult thing, like people would be sick from their periods, et cetera, but I always had this feeling that it’s this amazing experience and it is difficult. But I guess that’s part of being a woman and even that aspect of it being difficult, I found something to be, like it means that you are strong and you’re special and you’re like kick arse and guys can’t do this, but women can. And I always just thought it was this really exciting thing. And it’s only as I got older and only when I started having conversations with other girls, like the girls at school, nobody had the same kind of excitement about it that I had. 

So when nobody wanted to really celebrate the fact that I finally had one, I was a bit disappointed.

Le’Nise: I want to go back to what you were saying about how you thought it was this amazing thing, but you knew it was going to be difficult, but that difficulty kind of imbued it with strength. And once you got your period, did you feel, you still feel like it was this amazing thing? 

Lee: Yes. So once I actually got my period, I every time I got it, I always felt really, it just reinforced to me, like how amazing my body is. 

And I was always like, ‘wow, I have a period’, like the novelty of having it did not wear off at all until maybe I think when I actually entered my late 20s, that’s when I was a bit like, OK, this is like this is excessive. Does it have to be every month? Does it have to be this long? But for a very long time. 

Just it showing up each month would be like, oh, wow, it’s back and I’m, I’m out here having a period. Amazing.

Le’Nise: So what happened in your 20s that then changed your perception of your period away from being something amazing? 

Lee: So a couple, a few things happened. So when I in my teens, my period was, it was pretty run of the mill. And actually it’s funny, because even the fact that it was pretty like easy going was something I was a bit underwhelmed by, because I was used to people having these stories about, ‘oh, my God. And when I got my period, I’m so sick that I throw up and it’s so heavy and it’s it’s so big and it’s so that.’ 

And I definitely had cramps, but they weren’t excessive. And it wasn’t something where I needed to to take painkillers. I’m pretty sure that quite often I didn’t. And then the period itself was not heavy. It was fine. And I kind of then also felt a little bit underwhelmed by that because, like I said, my understanding was that everybody was having these, like, really intense, crazy experiences. 

But when I came into my early 20s, that started to shift for me and that suddenly the period became definitely more painful. 

And I also became, I was on, I started using the contraceptive patch and actually it gave me a little bit more understanding of what my body was doing. So once I started using the contraceptive patch, it was my first experience of hormonal contraception. I noticed that a monthly pain that I would get, which I never could figure out what it was, it just disappeared. And I didn’t, I got really curious about why that suddenly happened once I was on contraception. And that led me to do a little bit more investigation and realised that actually that pain that I would get that I didn’t understand before was mid cycle pain, ovulation, pain. And initially I was, actually unsettled me initially, but not enough to make me feel like, ‘oh, wow, I don’t want to continue using this hormonal method of contraception.’ And the breakthrough, the break bleed that I would get every time I took one of the patches off for the week that you’re supposed to take, it was fine. It was like five days, barely anything. It was great. 

But after a year of using the patch, I just couldn’t get the niggling feeling of, ‘OK, you’re not having this pain that you always had every month anymore because you’re not ovulating.’ And the fact that I was stopping my body from doing that process really unsettled me, so after a year, I had decided to stop using the patch. And then when my period came back. It came back. And I don’t know if I’d forgotten what had been like before, but it came back and I felt like it had a different quality to it. I definitely experienced more pain during and it wasn’t as heavy, but I was really quite struck by how much pain I was experiencing. And I thought that was because my hormones were rebalancing. And again, it was something that kind of made me feel a bit not great about hormonal contraception because I’d notice that it had stopped my body from doing a natural process that I know it would do it would that would have ordinarily occurred. And also, I felt like if I’m suddenly having a different period experience because potentially my hormones might be out of whack, I didn’t, that really unsettled me as well. And then this kind of persisted. The change in the quality to the period kind of persisted. 

And I know now that it’s obviously not, it’s not as a result of being on the patch. I think it was just the beginnings of me starting to see the physical manifestations of the endometriosis that I have. So from my early 20s, my period just became increasingly more painful and increasingly more heavy. And it was just, just frustrating because it was affecting my quality of, my quality of life, like I couldn’t concentrate at work or I couldn’t concentrate at uni if I was having cramps and, you know, people used to talk to me about my understanding of periods to begin with was that they were difficult, but nobody had ever positioned it in terms of, it will actually potentially stop you from doing the things that you want to do. I’ve heard people say, “oh, my period cramps are so bad that I throw up or my period is so heavy that I bleed for like two weeks”, but I’d never heard anyone say, but like, sometimes I can’t get out of bed. I don’t have any energy or I feel like my brain is really foggy and it might be related to my period or, you know, I don’t think I can go to school today or I don’t think I can go to work. No one had ever said anything like that to me. So when I was starting to experience that with my own period, I was a bit like, what is actually, what is actually going on.

And I’d go to the doctor and the doctor was really dismissive. And again, very much like, well, this is part of being a woman. And every every suggestion was always, have you tried this? Etc., etc., contraception. That was always the go to. And because I’d had the experience where I had understood, where I gained understanding into an aspect of hormonal contraception that unsettled me and I was not interested in going on any further hormonal contraception. My, my attitude to that immediately made them even more dismissive of me because it felt like, because it seemed like I guess to them, well, you don’t want to do this thing that we’re offering you that can help you, so you clearly don’t care that much. Yeah, and it just became like an ongoing issue for me, I’d be going to the doctor to, to talk about my period because I just felt like it. OK, I get that it’s a difficult thing, but surely it shouldn’t be this difficult and it gets, it’s getting worse and it surely can’t be the only thing that the only way to help me is to put me on like a hormonal contraception that’s going to stop my body, that’s going to prevent ovulation. That surely can’t be the only thing. And it doesn’t feel like anybody was interested in having conversations around what the pathophysiology was. And they were more interested in addressing what the symptoms were. And that as well didn’t make sense to me, because surely you should be interested in understanding why something is taking place, not just trying to block the physical manifestations of which it’s presenting. Surely there should be an interest in investigating what the root issue is. And I didn’t feel like anybody was interested. And it was such a discombobulating experience because I really felt isolated, like I was out here experiencing this thing that, that maybe I was even making up because nobody seemed to experience, nobody seemed to understand, like it didn’t seem as serious to anybody else as it seems to me. 

Le’Nise: I want to go back to what you were saying about, you said in the very beginning that you were amazed. You thought periods were amazing, but you knew that they were difficult. And that was the experience that you saw from the women in your life, that they had had difficult periods. And I wonder if as you were going through your mid 20s, through your 20s and you were, your period started to get more and more difficult that I wonder if there was some of almost a sense of stoicism because you expected them to be difficult. So you put up with perhaps more than you should have. 

Lee: Oh, absolutely. Like, the messaging that I got growing up was very much your period is going to be difficult, but almost like that is a badge of honour. And it’s not like I remember my mother would always say, oh, I always used to have terrible periods when I was growing up. 

My periods were terrible, they were awful. And then my other auntie would say, yeah, they’re horrendous. And they’d almost be in competition with each other about how bad the like whose period was. And like I said, I have six aunties on my mom’s side, so you can imagine like six women going back and forth about how their period is worse because it does this. 

But they were saying it almost like there was a little bit of pride in it. Like they it was like a badge of honour. And so when mine was difficult, finally difficult, I think that exactly like you said, I probably tolerated a lot more of it than I should have done initially because I, I thought, this is what you expect, like this is what it’s supposed to be. And it’s only when it became increasingly difficult to function within the realms of my ordinary life that I realised that, no, I, this really, really can’t be it. And I actually need to get some sort of help, some kind of relief, because my quality of life is severely becoming impeded. And I think. I remember even, every time I talk to anybody about, not even doctors, but just like friends or whatever to say, oh my gosh, my period, they again jumped to being like, oh, but mine is like this. 

And it becomes almost like a competition of how our periods are are really awful. 

But I was actually just looking for someone to confirm to me that it’s not supposed to be like this awful. 

Le’Nise: You also said that you spoke to medical professionals, doctors who felt you felt like they weren’t getting to the root cause they were just kind of putting, pushing some sort of pharmaceutical solution on you. So after you spoke to these doctors and you felt that this wasn’t the route that you wanted to take because of your own, what you called an unsettling experience of being on the contraceptive patch, what did you do next? 

Lee: So, I mean, I’ve always been somebody who likes to read and holistic or I mean, we call them alternative forms of medicine, but, you know, they’re just, they’re medicine in their own right. Holistic modalities of healing have always been a part of my life because growing up when I went to visit my grandma in Zambia, if you had a sore stomach, if you were nauseous, she would go outside and take leaves off her her guava tree and boil them for you to drink. She always had, like, remedies that seemed super unconventional, that were rooted in, you know, plant medicine to address things. 

And so I started looking into alternative forms of of healing or like that I could maybe engage in that, could support my my my mental health. And so it started with me trying to understand different supplements, but then very quickly started moving into trying to understand different forms of plant medicine that might be beneficial, and I wasn’t able to to engage with anything that changed the quality of the period in terms of making it less heavy. But there were definitely things that changed the experience in that I was more able to deal with the pain and also with the the energy dips that I would experience because I bleed so heavily and also the mood dips that I would experience. And that was through my own sort of experimentations with diet and herbs and and, you know, including different kinds of supplements into my diet that nobody else had kind of encouraged me to do or explained was a possibility for me. And which is how which is what led me into deciding to actually further my understanding and really try and delve a little deeper into the world of herbal medicine and alternative therapies that led me on the path that I am currently studying herbalism. 

Le’Nise: Before we talk about the herbalism, I want to talk about that because I find the whole space really fascinating. 

I want to talk more about the endometriosis and the diagnosis. How long did it take from the point where your period started getting really painful to you actually getting a formal diagnosis? 

Lee: It was over 10 years, it was over 10 years. 

Yeah, I started going to the doctor concerned about my period when I think when I was 20. 

Yeah, because I had my serious boyfriend then and I’d come off of the patch, even though I still had this serious boyfriend. I was 20. And I started going to the doctor about my period then, but I didn’t get formal confirmation, even though I was certain. I didn’t get formal confirmation until I had my first lap[aroscopy] when I was 30. And actually, it wasn’t the the reason that I was able to get that further level of enquiry was not on the basis of my period. So what happened was that I had this increasingly difficult period and everyone would say to me, all the doctors would say, “oh, have you tried this contraception? Or we can give you these painkillers. But unfortunately, it’s just the thing that some women go through.” But in addition to that, I noticed, because after my experience of the patch, I just became very much more aware of the different things that that my body was doing. 

And I think that that was really helpful for me being able to put together a picture of what was going on and I would use that picture to to try and present it to the health care professionals, and they weren’t taking advantage of the investigations that I was doing by myself.

So in addition to having this difficult period, I also noticed that every time I was on my period, I’d have really painful bowel movements. But it was only when I was on my period and further investigation led me to find that actually that’s quite common for women with endometriosis. If you have endometriosis that is located around your, your colon or whatever, if you have deposits of endometriosis around there, you’ll find that same that same pain is described. And then additionally, I was constantly having these blood tests that would show that, they would say that my iron levels were either low or borderline, and that was to do with obviously me bleeding so heavily. And when I put the pain, the, the heaviness and that pain on opening my bowels together, I was really getting this picture of endometriosis based on what I was finding in books and on the Internet. But the thing that made them actually finally want to do further investigation was increasingly I was finding intercourse painful. And so I was going to the doctor and I had to change tact. And I realised very quickly that actually, I have to change tact. And I can’t say anymore that my period is an issue because they’re not interested in that. I have to go in and tell them that my main thing is that sex is very painful for me. And that should be the thing that I’m pushing because I already know now after, like going to the doctor for the past three years that they’re not interested in the period being difficulty. But if I go in maybe and I tell them that actually sex is becoming increasingly impossible for me, maybe they’re going to care more. So that became the thing that I was constantly going to the doctor to complain about. And initially it wasn’t that much more helpful because initially they weren’t trying to understand the quality of the pain that I was explaining to them. They would try and position it as, oh, do you maybe have anxiety around sexual intercourse? And I was like, not originally, but increasingly. Yes, because it is increasingly becoming something that is difficult to enjoy. 

And so then they’d be like, oh, maybe you have vaginismus. And I said, no, that’s that’s I’ve looked into what the symptoms of that are and how it manifests. 

And that is not it, I know that’s not it, and what it was, was collision dyspareunia. So pain on the cervix every time there was like contact with anything be it a speculum, a penis, a finger, pain on the cervix collision dyspareunia. 

And I would even give them the terminology that I found in books. And they were just, again, quite dismissive. But I was persistent. And I think that I, I was really persistent. And even though they were dismissive, it was not in the way that they were dismissive about the period. So I was really persistent. I went through so many different doctors and so many different suggestions as to how I should approach it. One person referred me to a psychotherapist because they thought that maybe it was a psychological manifestation of, it was a sort of physical manifestation of a psychological issue, which it wasn’t, which is actually very insulting. 

But I just persisted and kept on saying, well, there’s this thing happening and it’s only towards the end when I found somebody who was prepared to refer me further to a specialist gynaecologist. 

When I got to the specialist gynaecologist, I said to him, “So there’s this thing happening with the pain of intercourse. But additionally, I also experience pain, voiding my bowels when I’m on my period. And I also have very difficult periods that are very heavy and very long and leave me constantly with very low or borderline levels of iron.” And I thought that positioning all of that to him, giving him the full picture would maybe make him more, he’d immediately understand that clearly there’s an underlying pathology, but I think. I mean, I don’t know, but my understanding is that the NHS and its limitations can sometimes make it more difficult for, for doctors to practise medicine in the way that they want to practise medicine because they are limited in terms of, I guess, what they’re able to to offer just based on their own funding and things like that. 

So initially he said to me, we’ll go for a scan, even though as a specialist gynaecologist, he would know that there’s no, a scan and an ultrasound scan is not a definitive way to diagnose endometriosis. It can show perhaps manifestations of your physiology that might suggest the presence of endometriosis, endometriosis, so, for example, you might have an ultrasound scan and the technician notes that there’s very little movement in your womb and that little movement could be due to the fact that you have endometriosis that has sort of fused your uterus to other structures, meaning that it’s less mobile. That could be something that’s picked up on the scan. But the actual presence of the endometriosis itself, a scan can’t do that.

So I think he sent me for a scan to kind of shut me up and to say, oh, well, look, we care enough to send you for a scan. But I’ve had scans before, and every time I’ve had a scan it had come back as nothing and initially back in the day that used to really stress me out, because I would think, well, then what’s wrong with me until I did a little bit more reading myself and found out that actually, like I said, a scan is not a definitive way to identify endometriosis, so I knew that, like, if he sends me for the scan, probably nothing is going to come up because I had scans before and they’d always say, Oh, but there’s lots of movement in your womb. It moves really, really well. And I don’t see anything to suggest that you have endometriosis. But I thought that if I just keep on just pushing and pushing and pushing and pushing, finally, I mean, I’ve got to this point where I now have a specialist gynaecologist, so if I keep pushing and pushing or pushing, maybe I’ll get to the point where some they’ll finally just take it a little bit more serious, where they’ll get bored of me coming or something and they’ll just do whatever investigations that they need to do, whether or not it’s something that they they they deem costly or not, they’ll finally just do it.

So I went to the specialist gynaecologist. I went for a scan. It came up as nothing. I kept going back to the specialist gynaecologist to complain about my condition deteriorating even further. And finally, he was like, “oh, well, I’m going to refer you to a colleague of mine at UCLH, who is a consultant who deals specifically with women’s reproductive health, in particular endometriosis, because they have a specialist endometriosis unit at UCLH. And I feel like before I even got there, the, my gynaecologist had positioned it to this consultant in a way that was maybe a little bit dismissive because I had my first appointment with the consultant and we discussed my case. And after everything that I spoke about, everything I told him, he was still a bit like, “Well, you know, you’ve had like four scans at UCLH. And our scanning technology is actually very high tech and our scanning technicians are very well trained. So if they haven’t found anything, I think that it’s unlikely that you have endometriosis. But if you want, we can do a laparoscopy if you want. But bear in mind, a laparoscopy is a surgery. So, you know, but I doubt that we’ll find anything because like I said, you’ve already had all these scans and our technology here is top notch technicians here are really trained to find this kind of thing. So the only thing we have found is that your uterus is tilted, so you have a retrograded uterus.”

And I knew this from like every time I had a smear test, they’d struggle to find the cervix because my uterus, my cervix is tilted because my uterus is tilted. Now, that’s something that they will tell you if you go to the doctor, they’ll tell you, oh, 20 percent of women have that. It’s just something that happens. Nobody is actually ever interested in being like. But why is that? It’s not just something that happens. Why is that something that happens? What I discovered for myself is after I finally had my first lap[aroscopy] is that my uterus was retrofitted because my uterus, my vagina and my colon had all my uterus, my cervix and my colon had fused together because of endometrial tissue and that mispositioned, misaligned my uterus. So this whole time, like for 10 years, everyone was saying to me, “oh, you know, your uterus, your cervixes is, your uterus is retroverted, your cervix tilts up into their right. And that’s just something that happens to 20 percent of women. There’s no reason for it. It just happens.” 

But in my mind, I knew that it could that couldn’t be the case. It couldn’t just be coincidental that I have all of these issues surrounding menstrual health. And additionally, I have a uterus that just happens to be retroverted. Like, I have a cervix that tilts up to the right, but at the same time, the same cervix is the cause of a lot of discomfort for me and intercourse and my periods also difficult, etc., etc. I knew that it couldn’t just be coincidental, but for whatever reason, that did not seem to be the case for the health care professionals that I was seeing. 

Le’Nise: Wow. So, I mean, there was so much in there. I think there’s medical gaslighting. There is the fight, the persistence that you had to have in order to get this diagnosis, to actually get a laparoscopy. There is the fact that you had to learn medical language in order to be able to have a conversation with these doctors who still didn’t believe you. 

I mean, I want to say this isn’t something I hear a lot, but it’s something I hear all the time. It’s and it infuriates me every single time I hear it, because you, you shouldn’t have had to have fought for ten years for something that you knew was happening to your body. Oh, my God. It’s just it’s. Wow. 

But for listeners who are going through the same thing and who are thinking, ‘OK, I’m on this journey. I’ve had the scans. I know I have endometriosis.’ Talk about the process of having a laparoscopy because this isn’t just minor surgery. This is you know, you, talk about what it is and the fact that this is used as an endometriosis diagnostic tool. 

Lee: So the laparoscopy is the only definitive way to confirm the presence of endometriosis, and it’s basically a surgery, a keyhole surgery in which they go in through like a couple of incisions in your in your bellybutton and maybe to the side or a little bit underneath your belly button and with a camera and with some other little tools to move your stuff around. And it’s basically the only way that they can really have a look inside and confirm. Because endometriosis, it can be very small deposits of endometriosis, but the amount of it doesn’t necessarily always correlate with the experience that you’re having. You know, you can they can enter it and find like huge deposits of endometriosis and the person actually not be experiencing that much of a difficulty in their, their lives. Or they can go in and find like little tiny deposits of endometriosis. And actually the person is experiencing a really difficult time. So the amount of it doesn’t always correlate with the actual experience that you’re having. But the nature of endometriosis is so that it’s endometrial tissue, tissue from your womb that is, I want to say displaced, but basically starts to appear in sites outside of your womb. And so when your womb is going through the various changes that it goes through throughout your monthly cycle, the tissue that is not in your womb but is womb tissue is responding in exactly the same way. So when it comes to a point where your womb lining is now shedding and it’s bleeding, you have your endometrial tissue, which is this womb tissue that’s appearing in places outside of your womb. It could be on your ovaries, it could be behind your cervix. It could be on your colon. That tissue is also trying to shed as well. So it’s also bleeding, but there is nowhere for that blood to go because it doesn’t have the same exit point that the tissue in your womb would have. 

It can’t just exit through your cervix because it’s floating, it’s placed wherever it is outside of the uterus. So it’s trying to bleed and the blood has nowhere to go. So it starts to accumulate. And what you find is it starts to become scar tissue. You start to get adhesions. And your scar tissue if it’s positioned where there’s other organs, which is likely the case because everything is in there all closely together, the scar tissue can start to stick to other organs, which is why a lot of doctors, when they do send you for these scans, they’re looking for this sort of immobility that I said, because if you have a lot of endometriosis, you have a lot of adhesions, which means a lot of sticking to other organs. 

And obviously that goes in grades so you can have, like scar tissue that is newly formed, but then over the years, if you’re constantly bleeding, it’s constantly going nowhere and the scar tissue is being formed know it starts to become a more mature scar tissue. It starts to become larger. It becomes a more pervasive pathology. 

And it just means that, you know, the interventions required become a lot more severe or a lot more difficult, which is why it’s so important for people to be taking the time to really listen and do the investigations that are necessary as early as possible, because it’s a progressive, it’s a progressive condition. And when they finally gave me the lap[aroscopy], I remember I remember on the morning of the surgery, the consultant said to me, “OK, so we’re going to go in and we’re going to go and have a look. But like I said, you probably won’t have anything. And actually, if there is anything, it’ll probably be really small and we’ll just, like, cut it out and you’ll be fine.” He absolutely said exactly that to me the morning of my surgery.

And then I was waking up in the recovery room a few hours later with a whole team of doctors surrounding my bed. And I was dizzy and I was woozy and my mind was not altogether. And I have this whole team of doctors surrounding my bed and they’re saying to me, “OK, so it wasn’t what we thought it was going to be. We weren’t able to do anything at this time because actually the amount of endometriosis that you have is very severe. And what we’ve discovered is that it’s stuck in the back of your cervix, your uterus and your colon together. And so it’s actually, you’re at a point where we would grade it a stage four and we can’t do anything about it right now because it’s a very specialised surgery that we need to perform to be able to remove the endometriosis and to safely separate your uterus, your cervix and your colon.”

And that’s like such a bombshell when you’re working, waking up from surgery, that is such a bombshell to hear. And even after that, when I was awake, I was still not understanding, like, how is this possible? Because you said to me that it was probably not going to be anything. And if it was anything, it was going to be really small bits. And now I’ve woken up to actually it’s like around the worst that it can be like. How is it possible that you guys didn’t care that much and that it get to this this bad. I just couldn’t believe it. And also the fact that nobody is prepared to, like, hold their hands up and be like, oh, we kind of dropped the ball here and we’re sorry because this is not just a random physiology that’s like taking place in the realms of like just some alternate dimension, it’s something that’s actually happening right now here to an actual person. And the implications of this directly affect my life and have been affecting my life for the last decade. It’s not good enough to, to be so dismissive. It’s not good enough to find out that actually for a long time, you guys have been making a huge error. And then for nobody to want to take responsibility for it, that’s it’s just not good enough. And I don’t mean responsibility in terms of like compensation, but just for someone to be able to be like, “we should’ve listened a little bit more or we’re sorry that this happened to you.” 

Le’Nise: And did you ever challenge them? I know waking up from surgery and you’re not in the right state to be able to push back, but once you recovered and were you able to say to them, you know, “what happened to you? You said that I didn’t, you know, it wasn’t that severe, that you were just very dismissive.” 

Lee: Yeah, so, yeah, so after the surgery, I woke up, I had that whole team of doctors, they said that it was stage four and they couldn’t do anything then and then because it was a specialised surgery. And they also told me there and then that they would need to induce menopause before they could carry on and do the next surgery that would be required. So after I had had time to kind of digest that, I had another, I had another appointment with the consultant. And I was really quite angry. But I think I was, I had the benefit of that I had years of really reading up and trying to come to understand this pathology and the pathophysiology related to it. And so I really wanted to understand exactly like you said, like how. 

What happened? How did you guys drop the ball so badly on this? And like I said, I just didn’t feel like there was any kind of accountability at all. The consultant said to me, “well, you know, these things happen. You know, remember, like I said, you had four scans here at UCLH. And our scan technology is actually some of the best scan technology in the world. And our scan technicians are some of the best scan technicians that you can get and they couldn’t find anything.  So for us, we really thought that maybe, you know, this wouldn’t, the result that you had, wouldn’t be the case. And we’re just as shocked as you are” and just really no accountability, regardless.

And then there was the issue of me saying, “well, you’ve kind of dropped a bombshell on me and that it’s as severe as it is. And for me to progress further that you, I need to induce menopause and nobody has, you just said that. But nobody’s explained to me like, what are the implications around that? And from doing my own research, I know that if I stay on the drugs that you are going to give me to induce the menopause, if I’m on them for longer than six months, that has negative implications for things like bone density, which is a real issue because it literally is the minerals from your bones and then osteoporosis becomes an issue and nobody’s even thinking or decided to mention that to me, you know, you’re talking about you want to look at surgery in six months time, but I have personal experience of surgeries being pushed out. So if this surgery is supposed to be in six months time and I’m supposed to be in a menopausal state for six months, if it gets pushed out, that means that I have to continue these drugs for even longer. And what are the implications of that for my, my health long term?”

And I think I was really lucky in that I’m somebody who really likes to understand and know things. So I had been doing this reading, I had been doing this research. And because I had come in and challenged that, they decided to bring the surgery earlier. They scheduled it for three months time. And actually what I said, it did get pushed out by a month. So if I had, you know, settled for the six months that they just told me without any explanation of what it looks like or what the side effects are or what could the potential dangers of being on this medicine to induce menopause that they were going to give me, I could have been on it for much longer and then years down the line, be suffering with osteoporosis and trying to understand, well, how did this happen to me? I eat healthy, I do yoga, blah, blah, blah. And maybe nobody would hold their hands up and say, well, actually, do you remember that time when you were taking that that menopause drug? That is why. And I think that that’s so troubling because I know that there must be a number of women out there who are being told these are the protocols that you have to engage in in order for us to do X, Y and Z, but not with any understanding as to what the implications of that actually is for their health in the longer in a wider sense. 

Le’Nise: I want to then go forward to when you had the surgery. Can you talk about the outcome of the second surgery that you had? 

Lee: So the second surgery that I had, they were able to they basically had to remove a section of the colon while they were removing the endometriosis. And they were able to do that successfully with minimal disruption to the other faculties of, of my body. So there was a risk, quite a large risk of having to have a stoma, potentially temporarily, at least post surgery, because they needed to remove quite a bit of colon and the healing sometimes without wanting to, to put too much strain on the rest of the colon while it was healing, the best thing to do is give a stoma, but luckily they were able to do that without having to, to do anything else. So the surgery went well. There were still some deposits of endometriosis that needed to be removed, which was done in the later laparoscopy. But the, it was more the the I think the most difficult part of it for me was the run up to it because I had not been on any kind of hormonal intervention for over 10 years, and then suddenly I was in menopause.

And the side effects, the hot flashes, the very crippling lows and just the lack of energy, the brain fog, the insomnia, all of those things were really difficult to deal with. And they don’t just go away once you have the surgery. So there’s a long period afterwards as well. Even when your period comes back, it’s not, it’s not immediately everything is is back to normal. I think it’s been a year and a half since that surgery, that second surgery, and it’s only just now that I feel like I’m starting to feel like myself again in terms of like mentally and in terms of just the way that my body feels. But there’s a lot, that there’s a long period of, of really not feeling quite like a stranger in your own body and in your own mind because of that medication. 

And I didn’t again, I didn’t know that was going to be the case. I had some understanding from independent research that I had done. But the understanding and the reading is nothing was nothing compared to the actual experience. 

Le’Nise: And when you were going through that, did they offer you, because I’ve had clients who have everything you’re describing, I’ve had clients who have been in the exact same position. Did they offer you HRT to get you through the next stage? No?

Lee: No, I asked. And they were like, “well, no, because now you’re only going to be doing it for three months, so you probably don’t need it. And you’re young, so. You’ll be, like your response won’t be as severe as somebody who’s already like reaching menopausal age.” And again, I thought that that. That can’t be right, but I feel like at some point you also for me, definitely there are times when I have a bit of like advocacy fatigue in terms of advocating for myself, like sometimes it’s a bit like, ‘OK, well, which, is this a hill that I need to die on, like is this a battle that I need to really, like, go through? So this as well, because I’m already trying to like advocate for myself and so many other aspects of this particular condition, so maybe this particular issue to do with the HRT, I can put it to the side for now’ and which it shouldn’t be like that. It shouldn’t be the case that there’s so many aspects of your condition that you’re having to fight with people about, that you have to decide which one you’re going to, to pursue this because it’s exhausting.

Le’Nise: Yeah, I’ve been through, through advocacy fatigue myself, and it is exhausting. I do want to ask about the racial aspect of it. So as a Black woman, there’s a lot of research that shows that Black women are dismissed more in medical settings and there is a distrust of medical professionals. Anecdotally, can you speak to whether or not you think that there was an element of that in your experience for you? 

Lee: One hundred percent, absolutely. 

Because even when I was initially going to the doctor and I was talking about my periods, they would say, “yeah, and we actually find that Black women tend to just have more difficult periods. They just experience more difficult periods.” The amount of times people said to that said that to me, “women who are of Black African and Caribbean descent just tend to experience more difficult periods. But have you tried this contraception?” 

It’s mind blowing, and then I actually think the reason why my deciding to go with sex being impeded as the new thing, I was going to push to get further investigation. I think the reason it was so well received was, again, because I was positioning it as, as like I think a lot of people assumed that my Black partner would have, it was more of an issue for him than it was for me. So me positioning, me pushing the fact that sex is an increasingly difficult thing, I don’t even think that they were looking into it because they cared about me. I think it was more being interested in the quality of experience that my partner was having as a result of me being me struggling to, to engage in intercourses without without difficulty.

And I think this when I would be talking about the things that I had read or whatever, I kind of got the feeling that they were even more dismissive because they just felt like, well, what do you know about it? Like what what what do you know? Like, why would you know that? And I don’t know if maybe White women or women of other races have would have that same experience, but I definitely felt an element of almost being scoffed at because they just couldn’t it just didn’t make sense to them that, like, why would you know and why would you actually be somebody we should listen to? And actually, I was giving really valid information that they were consistently missing and not taking me up on, and actually as a result, you know, the situation persisted for much longer than it needed to persist and when it was finally caught, it was at a stage that it really didn’t need to be at. 

Le’Nise: What message would you give any doctors that are listening to this show about your experience and how you believe that they need to take the words that you’re saying into their treatment of other patients with similar conditions?

Lee: I mean, I think I understand definitely they are under immense pressure with they only have 10 minutes for an appointment and that makes it difficult to really, I think, practise medicine in the way that they would ideally want to practise medicine. But I think a very important thing for them to take forward or just to try and engage with, is the understanding that somebody’s health it needs to be a more collaborative process. It can’t be. You know, it really can’t be like a dictatorship in terms of the doctor and the patient, they should really take advantage of the patient’s personal understanding and the information that they are bringing to them and treat it as though it’s a collaborative effort to bring about the ideal result. Because I guarantee, I mean, I’m sure there’s maybe there are some people who, who will frequent a doctor for attention. But I guarantee if you have a patient who is constantly coming to complain about the same issue, it’s not because it’s fun for them. It’s because it’s really affecting their life. And you have opportunity to, to maybe even in an easier sense for yourself and get to the root cause if you’re prepared to view it as a collaboration as opposed to a dictatorship. Because as much as, you know, as a doctor, from your learning with books and things that you’ve seen, you can’t ever really know somebody’s personal lived experience, that your understanding of pathology from a binary medical textbook sense will never, it can never under cut somebody’s personal lived experience of their pathology and what they’re experiencing, so just being able to really listen or wanting to listen from a place of wanting to understand as opposed to from a place of just wanting to to respond, that in itself is a huge thing. 

Le’Nise: So health needs to be a collaborative process. Doctors really need to not, just hear you, but really listen too. 

Lee: Oh, yeah, for sure.  

Le’Nise: I mean, we could, I could talk to you for so much longer. You’re, you’re so interesting. We haven’t even talked about the herb side of it. But I want to end the conversation by talking about the patient side. So what words would you say to someone who is on this journey and they just feel like giving up? What would you say to them? 

Lee: I would say to them, you should absolutely, despite what anybody else will say to you or how anybody else will try to make you feel, you really have to continue to trust and believe the things that your body, your heart and your mind are telling you. You have to really listen to what your body is saying to you, because it absolutely knows what it wants. It absolutely knows what it means. And like I said before, doctors will have medical textbook knowledge. They’ll have maybe things that they’ve seen in their careers, but that can never undercut your personal experience. Like there’s nobody who has more knowledge on it than you do. And you have to believe that. And don’t be afraid. I think it can be really daunting to be in those situations as a patient because you think, well, this person knows more than me and they position themselves as though they are the authority, but you are the authority on you and your body and your physical experience. So don’t be afraid if you don’t feel like you’re getting the, the attention or the understanding or the care that you need, don’t be afraid to ask for, for better or to just say, you know what, I’m going to try and look for a different opinion and it might take you two, three, four different opinions, sometimes it’s difficult like that, it shouldn’t be, but sometimes it is. But don’t be disheartened. Don’t, don’t stop trying to find the answers for yourself. If yourself is telling you that something is wrong. 

Le’Nise: So much good stuff in this conversation, don’t stop looking for answers, you know your body, trust yourself. Thank you so much for coming on the show today, Lee. If, if people want to find you if they want to ask you questions. Where can they find you? 

Lee: So I am on Instagram, I’m sure. Well, you’re obviously going to tag my Instagram account. And I’m actually in the process of building a website platform, basically a wellness destination for all women, but in specific women of colour, because I think it’s very important that women of colour are afforded the opportunity to engage in wellness and self care as a lifestyle in an accessible way. So I’m in the process of building a platform for that. And before the end of year, hopefully I will have something for you guys. And it’s just really a place that combines the understanding of movement as medicine and the understanding of the natural world and our natural herbal heritage as a place for holistic health and just holistic living and positions self care as an integral ceremony that doesn’t necessarily involve. Bells and whistles, but can be engaged in as just a lifestyle practise that you deserve, because I think there’s an understanding there has been too long an understanding that rest, restoration, selfcare, wellness, these are privileged things and they’re not privileges. They’re your absolute right and you deserve them. 

Le’Nise: Whoa, self care is a practise that you deserve. I absolutely love that. OK, so have to have you back on the show or doing Instagram live. But for now, thank you so much for coming on the show. It’s been an absolute treat talking to you. 

Lee: Thank you so much for having me, Le’Nise. Like I said, I’ve been wanting to talk to somebody about my period for ages. 

Period Story Podcast, Episode 35: Lauren Lee-Crane and Catherine Lee, Become An Expert In Your Own Body

To round out season 3 of Period Story, I’m really excited to share today’s episode with twin sisters Lauren Lee-Crane and Catherine Lee. They are the founders of Semaine, a health and wellness supplement for people with painful periods. I loved our conversation and am really grateful they shared their story of living with endometriosis, going through various surgeries, being Asian in the ballet world and of course, the story of their first periods.

Catherine said that her first period was very memorable because her mom made homemade Frappuccinos to toast the occasion! Within a few months, she said that she was already asking for a hysterectomy. Lauren says she got her period after Catherine and really didn’t want it.

We talked about being bunheads, which is the term for girls who do ballet at a relatively high level and how they navigated this very structured, hierarchical and rigid world. They were often told that they were too exotic for the ballet world and that they didn’t have the right ‘look’.

Lauren talks about how as ballerinas, they learned to suppress and numb themselves to any pain they experienced and this translated to the endometriosis pain as well. Lauren says they thought of it as just another pain they had to deal with.

Both Lauren and Catherine shared their endometriosis journeys, with Lauren getting diagnosed with stage 4 endometriosis and Catherine getting diagnosed with stage 2 endometriosis. Lauren described the pain she experienced as ‘a bouquet of knives sort of sitting up in her pelvis’. Catherine describes her pain as ‘feeling like she had a bowling ball in her uterus’.

Catherine and Lauren shared stories of their pain being dismissed by doctors and health professional in quite critical moments and how they’ve learned to advocate for themselves in health situations. Catherine says that it’s important to become an expert in your body and Lauren says to trust yourself and advocate for yourself. Thank you so much, Lauren and Catherine!

Get in touch with Lauren and Catherine:

Website

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CATHERINE AND LAUREN’S BIOS

Lauren:
I’ve had painful periods since I was 15. After decades of believing the immense pain I experienced was normal, I was diagnosed with endometriosis and underwent multiple surgeries. I don’t want other women who have painful periods, endometriosis, adenomyosis and PCOS to go through what I have. Finding a natural way to support women’s health and voice their stories are the reasons we started Semaine: a health and wellness supplement for people with painful periods. 

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Catherine:
In my late twenties, I started to experience worsening symptoms from endometriosis. In 2015 I elected to have surgery and was diagnosed with stage II endometriosis. I see learning to live with endo as a journey – taking care of myself, listening to my body, and voicing what I need to be healthy. Normalizing the conversation around periods and period pain, is exactly why I wanted to start Semaine with Lar and her husband Matt.

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SHOW TRANSCRIPT

Le’Nise: On today’s episode, we have Lauren Lee-Crane and Catherine Lee. They are the founders of Semaine, a health and wellness supplement for people with painful periods. They started Semaine after both being diagnosed with endometriosis and undergoing multiple surgeries. Lauren says that she doesn’t want other women who have painful periods. endometriosis, adenomyosis and PCOS to go through what she did. Catherine says that normalizing the conversation around periods and period pain is exactly why she wanted to start Semaine. They wanted to find a natural way to support women’s health and voice their stories. Welcome to the show.

Lauren: Thank you so much, Le’Nise, so happy to be here.

Catherine: Thank you, so excited.

Le’Nise: So can you both start off by telling me the story of your first period? 

Catherine: Yes, this is Catherine. I will tell my story first because I got my period first, which, I was very upset because I thought as twins we were supposed to do everything together. 

And I think I got my period almost like 6 to 12 months before Lauren did. And I remember it very vividly. We were, so we grew up outside of Washington, D.C. and Maryland. And every summer, our extended family had a beach condo in Ocean City, Maryland, which is on the eastern seaboard.

So we were at the beach, of course, so we were at that condo. And I still remember there were two bathrooms in that condo and the bathroom where I discovered I had my period. It had all these like orange and brown daisy wallpaper that I feel like that’s like stuck in my mind. But anyways, so I was like I started my period and I was like, oh no. And I remember I told my mom and she was like, so excited, at least that’s the impression I got. Like, maybe she was like, oh my gosh, what’s going on? But I remember it was when this is gonna age us for sure, but it was like a couple years after Frappuccinos came out in Starbucks and there were no Starbucks in Ocean City at the time. But my mom had found like a recipe to make Frappuccinos at home. So I remember she made, like, took out the blender at the beach condo and like made Frappuccinos. And we all, like, cheered to my womanhood. I was mortified and I was just like, I don’t want this. And I think eventually, like within those first couple of months of having my period, I think I asked my mom for a hysterectomy. Like, I don’t really know what it was. I just thought it was like it meant you didn’t have to bleed every month. So my mom was like, “but you’re going to want to have babies and all the things” and I was like, “Not worth it, don’t want this, get it out my body.” And I was just like, not. And I had I remembered, like, you know, with reading like articles like reading teen magazines and stuff and books like women were or young girls were so excited to get their periods and I was like, I can’t really I don’t I don’t want this at all. And I know, like, Lar, you can talk about it, but I know you were like, equally mortified for me.

Lauren: I remember. Oh Cath was twelve. Yeah. So we were a little bit older, I feel like when Cath got her period, I remember I was just like, ‘Oh my God, thank God I don’t have mine yet. And I, I think the reason why we felt that way is we were both dancers. We wanted to be ballerinas. I feel like most little girls at some point want that. We continued to want that until we were 18 and we danced all the time. We, we did like twenty five hours of ballet every week. That was our life. And as a ballet dancer, anything that’s going to cause you inconvenience or make it harder for you to be a ballet dancer, whether it’s to develop breasts, you know, you just want to be skinny. You just want to be able to move the way that you’re used to moving when you’re 11 to 17. And I remember, it’s like a period is going to be such an annoyance because, you know, you have to wear a tampon, you have to wear a pad. So I remember when Cath got her period and she was saying like she was so embarrassed. It was just me and my mom and my dad there. It’s not like we had other people at the condo with us. And I was so embarrassed for her, like, ‘oh, my God, why are we talking about Catherine’s period? I’m so glad I don’t have mine.’ Catherine’s right. I did get mine six months after her and I actually had mine when we were doing The Nutcracker. So every December, you know, every bunhead in the world does The Nutcracker at some point. And Cath and I were getting changed. This is a, you know, a couple hours before you went onstage and I was putting my costume on and I notice there’s like a little bit of blood on my tights.

And I was like, “No, I think I know what this is though. Why is it happening now?’ Cause of, you know, happening right before you’re going on stage. You’re already sort of like nervous and excited and then getting this thing that, Catherine and I obviously we never wanted. I know there are women you’ve had on your podcast and our friends who are excited to get their period, that was never our experience. And I think a big part of that was being ballet dancers and being so focused on on wanting to do that in the sort of strange culture that the ballet world is.

 You know, I mean, it’s not like our ballet dancer teachers ever said, oh, getting your period is bad. I just remember hearing older ballet dancers talking about it and how painful it could be and how, you know, like I remember the Sugar Plum Fairy one year having to ask the costumers just to keep taking her out of her tutu because she had to go put a new tampon in. And I remember I was like, oh, my God, that sounds like such a headache. So that was that was our experience with with periods and ballet.

Le’Nise: Talk a bit about being bunheads. So for people who don’t know what that expression means, typically it refers to girls who do or who do, is it ballet and does it include gym, gymnasts as well? Or is it only ballet? 

Catherine: I think I’ve only heard it used with ballet and when you’re a, if you’re doing ballet at a relatively high level, like a pre professional level like you, it was until like probably we were 16 that we just assumed we weren’t going to be going to university, that we would immediately go into a company or if if we were lucky enough, maybe we’d apply to Juilliard, you know, which is a very well-known school. But if you did ballet specifically, not modern dance or something like that, you essentially go in to a company as early as, like 16, depending on where you are.

And it wasn’t until we were 16 or 17 that we realized maybe we should get a college degree.

Le’Nise: Tell me a bit more about the ballet world. I did ballet when I was really little. But the only thing I really know about ballet is Christmas equals Nutcracker or. And then Black Swan, the movie. That’s it.

Lauren:  That is totally understandable. I feel like that’s most people’s experience with ballet. And to be honest, Catherine and I have never seen Black Swan on because we were like, ‘it’s going to hit too close to home.’ So we’ve never watched it. But really, I feel like how it changed for us is when we were about eight years old, we decided, you know, this is our life. We started when we were about 3 because we had seen Baryshnikov, famous male ballet dancer dancing on television. And I thought he was flying. And I was like, yes, that is what I want to do. So I think a lot of people assume it’s like the pretty tutus or the pointe shoes. But for as we saw Baryshnikov and we like. That’s it. That that is life. And so we took like sort of the classes everybody takes when you start ballet and there’s like tap and jazz when we were younger and when we were eight, we went into this pre-professional academy. And so we would go to ballet anywhere from like when we were younger, it’s like three days a week, by the time we were in high school or about 13 – 14. We were going, you know, five to seven days a week and even leaving school early in order to go to class longer.

And it’s a very it’s a very, very structured, very hierarchical and very sort of rigid world. So each year, you’re trying to progress to sort of the next year. And within those years, you’re also doing performances. So The Nutcracker is the big one in the winter, but we’d have multiple performances in the spring, in the summer as well. And then in the summer, you’d also be applying for workshops with bigger companies like the Royal Ballet, if we were in the UK or American Ballet Theater, we would do workshops with the Joffrey Ballet Theater. We were often considered a little too exotic for the ballet world. We were told that multiple times. So we didn’t have as much luck with some of the bigger companies because we didn’t have the quote unquote look. This was in the 90s. Things have definitely changed now. Not as much as they should. But, you know, Misty Copeland’s out there, which is awesome. But that was very different for us. And sort of the mid, late 90s, we were just told we wouldn’t fit into the corps very well. So this was happening when we were sort of in our later teenage years. And one of the reasons why we ended up getting out of ballet and going to university instead just because of some of the discrimination we faced. But it’s in when you’re in that world, it just seems like even though you see that discrimination, you see, you know, the body dysmorphia that can happen. And obviously the way we thought about our periods was not particularly healthy. It was still such a dream for us like that, still having such a passion for something that almost nothing else mattered. You knowing you were just going to do whatever it took to get to where you wanted to be. And Cath and I were lucky to have each other because it’s a very, very competitive atmosphere that, the teachers are not particularly supportive. And we never competed against each other as twin sisters. It was like if Cath did well, I felt like I was doing well, even if she got a better part than me. But for the most part, you know, it’s not like a team sport. You are very much sort of alone in trying to be better than the next person next to you. So it’s it’s a very yeah. It’s as sort of a strange way to grow up because that, you know, we weren’t focused. We always had to do well in school because our parents were like, if you don’t do well in school, we’re taking you out of ballet. So we, we got the straight As or whatever we needed to do in order to stay with ballet. But really, that wasn’t important to us. It was just, do as well as you can at ballet. Nothing else really matters. And that’s you know, most people are going to parties when they’re teenagers or doing things like that. And we didn’t. It was just like ballet, ballet, ballet all the time.

Catherine: And a big part of it, too, was like Lar was saying about the teachers. Like, a lot of it in that world is just like you’re so desperate to get approval from all the teachers that you have, because they’re the ones who, like, you know, can help push you into a company. They’re the ones that give you better roles and different ballets and stuff like that. And then along the same side, of course, and you have the whole, like, body image aspect of it, which you always hear about with ballet.

Lauren and I were very lucky, we never had to worry about weight problems. I think that’s the Asian side of us. You know, we were naturally skinny, so we were very lucky in that. But we also didn’t have, like, Lar said there, we didn’t have the looks and we weren’t blond and blue eyed. And then on top of that, we didn’t really have the body type either. We’re tiny, we’re like 5″3 on a good day and and ah, you know, our pointes, our feet weren’t exactly like perfect. Our legs didn’t come up to our shoulders. We didn’t have super long legs. I think our torso and legs are kind of even. So it was all these things. It was funny because it was like we were very lucky. We had friends that, you know, suffered with anorexia and stuff and we didn’t have that. But for us, it was like growing up, knowing our bodies weren’t quite right for that world. So, like. And then on top of that, you have you get your period at 12, 13.

You know, and so it’s like one more thing to contend with. And the worst part was when, like, bloating started. I don’t think I started bloating. I don’t know. I can’t really remember. I was not in touch with my body at all at 12 and 13. But, you know, you can’t like suck in your stomach. And I remember dance teachers, you know, you want to tell them you were on your period and they would constantly tell you if your stomach was sticking out, you know, you’d be like, this is not my stomach. This is my uterus. 

Le’Nise: Can you guys both can you both talk about how you feel if you start thinking back to what you went through and the comments that were made about your body so to the bloated belly, from what we know now, is endometriosis and the comments about you being, quote unquote, exotic, talk about how you feel looking back on that now. And whether that had any lasting effect on your, the way you view yourself.

Lauren: Yeah, absolutely. It definitely does. We are now in our 30s, so it’s been almost 20 years since we’re in that very dysfunctional world. But for sure, I still, I still remember the comments that the teachers made either when we were on our periods. And I remember the times when I had such painful periods. But you still had to dance.

And I remember the idea was you just shoved down whatever pain your body was feeling and you did what you had to do. And that is still the idea that stuck with me, I think, through my 20s for sure. So even when my endo pain was getting a lot more acute, it wasn’t just super heavy, painful cramps anymore. I was getting sharp jabbing pains in my pelvis. I remember just thinking, ‘OK, this is another pain I have to deal with. You just take some painkillers and you go to work. You know, you just keep doing what you have to do.’ And, you know, part of ballet is, is discomfort and pain. You know, whether it’s pointe shoes, you know, your feet always hurt or just what you’re how you’re using your body is. You know, it’s like any athlete. You’re, you’re also creating a lot of wear and tear on your body because of how demanding it is. But that sort of pain and rigor is sort of, it feels normal. It feels like part of what you have to deal with. And for me, painful periods. And because I feel like a lot of the women who were dancing with also had painful periods. And I don’t you know, I don’t think most of them had endo, but I don’t know if it’s like a body fat thing. You know, you had really irregular periods because you didn’t have a lot of body fat on you and you were probably stressed out a lot. Your body is physically stressed a lot. So I remember just thinking periods were horrible and painful and abnormal and could be super heavy one month and then you wouldn’t get it the next month. And now that just seem like a normal thing to me. And we definitely never talked about that side of our bodies with our teachers. You know, the teachers. It was all physical appearance, like superficial appearance. If you were looking a certain way and I think you know, the other ways that they told us, you know, being too exotic, being too short. And I remember they said our legs weren’t straight enough. And that’s always stuck with me cause my legs were slightly bow-legged, which I don’t think you would normally think about if you were a normal person who had done ballet. But I remember one of our teachers being like, we could have fixed that if you had told me about this when you were younger and now you always have bowlegs and no company is gonna take you. I remember thinking, just like…

Catherine: If you look at Lauren and she does not, I don’t, I don’t think you have bowlegs. That’s the thing, it’s like these little things that get stuck in your brain. You know, for mine, it was like, you know, our arms didn’t straighten all the way or in the right line and our legs didn’t. But like, I didn’t know you had that bowlegged thing. She also has, like, very subtle scoliosis. And it was so subtle that teachers just thought she was not stretching her neck out enough so she couldn’t turn her head. So it’s this constant thing where it’s like it’s on you, you know, to fix things that are wrong with your body. The responsibility is on you. Obviously, we couldn’t do anything about our ethnicity. We never felt ashamed of the way we looked. But it but it was just accepting. There’s a lot of stuff we accepted back then, I think, because we were kids and it was the 90s that nowadays I don’t think they could have gotten away with it, like, you know, just accepting like, oh, yeah, we’re we’re not blond and blue-eyed. So that’s we’re not going to get certain roles, are, you know, or since their bodies aren’t exactly right, we’re not going to be the teachers aren’t gonna pay attention to us the same amount away. And that was just accept, that was to us that was part of the world. We just stayed focused on it. 

Le’Nise: You both have mentioned pain quite a lot, and something I find quite fascinating about ballet dancers is, you mentioned the pointe shoes and how you just have to, it’s painful and you’re putting your foot in a really unnatural way and basically balancing on your tip toes for like, what, 5, 6 plus hours, however long you’re dancing that particular day. 

And do you think that that going through, having to go through that or deal with that pain on an ongoing basis, kind of numbed you to the endometriosis pain in the beginning?

Lauren: Yeah, absolutely. I just remember thinking that, you know, as a dancer, you know, your feet are sort of shaped a certain way and you have a lot of pain. But it’s also something you learn to sort of pull out of a little bit. There’s ways that make it a little less intense. But I think you’re absolutely right using that word numbing because it’s kind of a weird contradiction, because as dancers, you are very self-aware about your body, you know, just in the ways we were saying, because your things are constantly pointed out to you, but also just moving your body and being able to move through space a certain way and control it a certain way. You’re very aware of your, the way your muscles move and the way your centre of gravity is. But at the same time, you do numb yourself out to any discomfort or any pain because that isn’t going to help you, you know, perform. So it is it’s this weird dichotomy of, of being very aware of your body. But at the same time, if there’s pain, or things that are hurting, that’s something to ignore or push down rather than say, I wonder why I have really painful periods. I wonder why my cramps are so intense or is I didn’t even ever question if that was normal. Our mom also had a really, really intense periods and right, I’m sure she had endometriosis. It was probably not the same stage that maybe I had it, but that was another thing. You know, in our household, it was sort of normalized that periods were painful. And my mom is also a very stoic person. But I wouldn’t say I’m stoic. She is a stoic person. And so she never really complained. She would just say, oh, you know, my period’s really hurting right now, but I’m going to continue to cook food for our entire family during Christmas or, you know, clean the house. It’s just part of what you have to deal with this pain.

Le’Nise: Can we talk about your both of you, your individual endometriosis journey?

Because so, Lauren, you said you had painful periods from the age of 15. And then, Catherine you said that in your late 20s, you started to have worsening symptoms from endo. Can you talk? So you both had endometriosis, but very different experiences. So can you individually talk about what happened to you?

Lauren: Yeah, so my endometriosis story is like a lot of women with endometriosis. It took a really long time to get diagnosed. I think the average time for women to get diagnosed is about 7 to 10 years. For me, it was about 15 years. And the reason why is because I think, culturally, we normalise period pain and a lot of ways, you know, not just in the ballet world or not just in our family, but I feel like whenever I went to a doctor and said, oh, yeah, my periods are very painful, they be like, oh yeah, that’s too bad. You should you know, you can go on birth control or, you know, just keep taking ibuprofen. Like, that’s all you can do. So even at the point when, you know, being fifteen years old and my periods were starting to get really painful and it was for me it was mainly really, really, I could have really heavy periods and then I’d have really, really intense cramping where you had to lay down like, I just could not sit up straight. I mean, my body was just like bent double and that didn’t happen every single period. But it happened, you know, often enough. And I always dreaded getting my period. It was never something I was excited about or just thought, oh, hey, I’m bleeding now. I always knew when I had my period and it was painful. I didn’t, I don’t remember skipping school or anything because, again, I thought you just keep doing what you need to do. So, you know, this is something that’s going to happen every month or every other month. If it was erratic and you just had to deal with it and then like Cath and I both had the experience, we were as we move through early 20s, that pain sort of shifted from really heavy cramping. To me, it was a lot of sharp stabbing pain. Like I explain it as sort of it feels like you have a bouquet of sharp knives sort of sitting up in your pelvis. That’s how endo felt to me. And I was lucky in the sense that I’ve only ever had the pain during my period. I know a lot of women with endometriosis, you have pain throughout your whole cycle. And I felt so lucky that it was just that week. But then you have a quarter of your month is something you absolutely dread. And at the time, my husband and I were moving abroad. We went to the UK to live in Edinburgh. And at that point, I was like, you know what, I I’m pretty sure I have endometriosis. I Googled it. I talked to my doctor about it. She’s like, “Oh, yeah. I think that’s what you have.” I mean, that was the conversation. That was it. And so, again, it was something where it’s like, OK, I just need to deal with it and figure it out on my own. And so I tried changing my diet. I went vegan and gluten free, dairy free, all the things. And my pain just kept getting worse because I think at that point I had so much scarring with my body. I also had an endometrioma, which I didn’t know about, which is a specific type of cyst you can get with endometriosis, especially in the later stages. So endometriosis, for those of you that don’t know, are stage similar to cancers of stage one, two, three and four. And I ended up having stage four. I didn’t know that at the time and no one had told me about these different stages. But as I was experiencing worse and worse pain, I would go to my GP in Edinburgh and tell her like it’s getting worse and I don’t know what to do about it. And then at the point that it was about six months before my first emergency surgery, I remember feeling a lump on the left side of my body around where my left ovary would be. And of course, that freaked me out. I just assumed it was ovarian cancer. And I told my GP and she said it’s not really anything to worry about. I don’t think you have to worry. And I really had to push her to get me an appointment to see an ultrasound technician. And I finally got that like, a couple months later. And the technician was like, “oh, honey, I’m so sorry. You have an endometrioma.” And I was just so happy it wasn’t cancer. I was like, I don’t know what that is, but that’s I was fine. And she’s like, but you’ll need surgery. And I was like, okay, you know, I’m OK. Take it out. And I had no idea what it was like. I just I just was like, OK, it’s not cancer. We’ll schedule surgery six months from now. Great. We’ll get it done. And I don’t know if it’s just like experiencing pain. You’re just like, oh, surgery. Yeah. Massive surgery doesn’t sound like a big deal because let’s just let’s just do what we need to do. And before I could have that surgery, that endometrioma ruptured. Again, I didn’t know that’s what was happening at the time. But it it felt like something had kind of broke or snapped in my body. And I just had so much pain flooding into my pelvis at that point. And I remember this is really early in the morning and Matt had to call, my husband had to call 999. And the EMT came and I was lying on the floor. And the guy was like, you kind of look OK, essentially, like he took my vital signs or whatever. And he is like, You look OK. And I was like, I can’t get up off the floor. And he was like, well, you know, you probably have like a sore tummy. Like it was it was a really odd experience. Like I was like, no, I literally like, I’m in so much pain. And he started to like, get ready to leave. And I was like, I have a heart condition, cause I have mitral valve prolapse, which is very common for a lot of women, and it’s never something that bothered me. But I knew if I said I had a heart condition, they had to take me to the hospital. And so he was like, oh, OK. So then they took me to the hospital and they even though I told them I had to be an endometrioma, I have endometriosis. They were like, we think it’s appendicitis. And I was like, OK. So it took them about 24 hours to decide what to do with me. And I finally ended up in the gynecological ward. And I think they thought I had an STD like I was in so much pain. And they did an exam on me with like a speculum. And it hurt so much. And they still kind of didn’t believe what was going on. And I started running a really high fever. And that happened over the course of a couple days. And then during those couple days where they still couldn’t figure out what was going on, my stomach swoll up because of all the fluid that was pulling into my pelvic cavity. They basically it was the endometrioma had ruptured and was like irritating everything. So my body was trying to protect all my organs. I looked about six, seven months pregnant, and that was when they were finally like, oh, OK, we need to do an ultrasound and see what’s going on. So this is like day five of being in the hospital. And they were like, oh, OK. You have 500 milliliters of fluid. You need to go in and do emergency surgery and pull all that out. And after the surgery was when they were like, yes, you have endometriosis. It was a ruptured endometrioma. This is what happened. And so I was in the hospital for two weeks, and that was after the EMT almost didn’t take me to the hospital. So it’s such a bizarre experience to to by your GP, by everyone being told like it’s no big deal. You know, and then this thing happens. It’s very traumatic, big experience happens. And so that’s, it’s just it’s been a hard, hard journey. And since then, I’ve done a lot more research. And a year after that first emergency surgery, I learned about excision surgery, which is, quote unquote, the gold standard for endometriosis treatment. At this time, there’s no cure. Where they go in and they essentially I’m sorry, probably saying this wrong, but laser out sort of like cut through even healthy tissue to get out a lot of the endometrial tissue that’s where it shouldn’t be. And we found an excision specialist in Atlanta. And I had my second surgery about six months later. And since then have had way less pain, you know, instead of being a 10 plus off the charts. Now, my period, I have about like a three or four, which is amazing to me because I never, never thought that would happen. But it’s been a very long, painful road.

Le’Nise: What you’re saying about how the EMT didn’t, didn’t. He said, you look normal, but you’re, yet you’re saying to him: “I am in so much pain. I need to go to the hospital.” And every single time I hear a story like that, it never fails to just make me really angry at it. 

Just believe women, believe women when they say that they are in pain. And it so absolutely enraged and enraging.

Lauren: Yeah. And I know that. Yeah. That’s not an uncommon story to hear, you know. And even if it’s not as extreme and you get to the hospital even talking to your GP and saying this is what’s happening, I never had a doctor say, oh, maybe you have endo or maybe there’s some other complication we should look into, even though my my pain was extreme. That was all my own research. And at that time, there weren’t. I’m so glad there’s so much more out there on the Great Interwebs right now about endometriosis. But at the time, there wasn’t that much. And I remember just trying to scour through pages and listen to, especially chat forums where other women were talking about this. I was like, OK, so I’m not crazy. I’m not alone. This is an actual thing because I didn’t get that experience from any doctor that I saw. And and sometimes people ask, like, oh, was it a male gynecologist? I’ve had tons of gynecologists. They’ve all been women. And none of them none of them took my pain seriously.

Le’Nise: That I mean, I it’s not you would say it’s unbelievable. But it’s not. I like it. I’ve heard this so often. Cath, can you talk about your story now? 

Catherine: Yes. Mine is slightly less or significantly less traumatic than Lar and I, it’s a lot of that I give credit for Lar for basically being the guinea pig between the two of us because her, we don’t know if it was partly because she did get off birth control. And that’s kind of what triggered more of an endo pain because I never got off birth control. So when she and her husband had moved to Scotland, I was still on birth control. And by my late 20s, like Lar, I started developing more pain that wasn’t just cramping. I mean, all throughout my teens and twenties, certain periods would be, the cramps would be so bad I would feel like I had a bowling ball in my uterus, like, you know, like it’s such a weird sensation. And I just assumed, especially with our mom, who had painful periods, I was like, wow, this is what every woman goes through when they say they have cramps. So like that, I never even though it was hard to like stand for long periods of time with that sensation, I was like, this is just being a woman. And then by my late 20s, it was actually when I would have my period, on my period, like, wow, I was lucky I didn’t have pain off my period, but on my period when I’d have a bowel movement, the pain like in my pelvic region and I guess around my colon was so extreme that I thought I would pass out. And what’s funny is like, you know, you see movies and stuff. People get so much pain and then they pass out from the pain.

 Like, I was like, why couldn’t that happen? I could not pass out. I would just have this extreme pain, you know, like where I would see stars and. And so that’s. And this is all while Lar was going through everything, which was horrendous and it was horrible too not being close to her and and not understanding the NHS system too, I was so confused by that. They didn’t let her have visitors at night. Like also like in the US, which, by the way, has a very broken medical system, too. I’m not like, I think the NHS is great compared to us, but in the States because everything’s charged to you. And they try to get you out of the hospital as soon as possible. They do like a million scans that first night. You know, they would have realized what she had sooner if she had been in the States. But that being said, she would have still been dismissed. So. So that was very like hearing from a distance, hearing her whole experience was kind of mind boggling to me. And I was, I remember being like, well, I just got to keep my periods not super painful. I don’t know what I would say. I mean, obviously, I couldn’t do that. I would take ibuprofen when the pain got really bad. I did start taking one or two days off of work. And that’s when I was like, OK, this is this is affecting my lifestyle. Like, I had to accept it. And then it was when the pain was getting so bad by my late 20s. And by then I think it was right before Lar had discovered that the Center for Endometriosis Care, which is in, which is in Atlanta with a great surgeon, that that’s when I was like, OK, you know, I think I’m going to have to do this, too. So it was a whole year after Lar had her excision surgery that I got it done too. And I have stage two endometriosis. So a significant amount of endometrial growth in my body, but obviously nothing to the extent that stage four would have. They did remove my appendix, funnily enough, because they did see endometrioma cells on my appendix. So I still remember, it was like they had given me that like horse tranquilizer right before my surgery. And then they come with this clipboard and they’re like, oh, just sign here. It basically says, we’ll take your appendix if it looks kind of weird. 

And I was like, oh, you know, I’m high on drugs. I did. I was like. But the other thing that you like for the surgery prep, especially as I told them, I had so much pain around my colon, was there was a potential for colon resectioning which like by the time I was getting my surgery, I had so much pain, I was like, do it. I don’t know, you know, not really thinking the ramifications. And surprisingly enough, I didn’t, I think they found some endometrial cells around my colon, but not to the extent that they had to do any type of resectioning. So I was very lucky in that sense. And like Lar, since that surgery, I have not had that pain. When I go to the bathroom, the pain is definitely instead of being like a 10, it is now during my period, it is like a 3 or 4, nothing to the extent where I feel like I have to take off work or just lie down. Ah, I don’t even need to use heating pads, which is kind of amazing because it’s like I feel like I always had to use those beforehand. So definitely Lar kind of paved the way for me. We we both grew up knowing somewhat what endometriosis was. We had heard it because our mom had kind of self diagnosed. But we it to us that just meant like literally you just had painful periods. And so it wasn’t until Lar did all her research and she was telling me about it. I mean, I for me, I think maybe it was because of ballet. Maybe it was just growing up as a woman in the 90s, as a teenager. Like, to me, it was just like deal with it, press it down, kind of what Lar said, not being in touch with my body in the sense like I always use tampons, so I won’t even have to, like, feel myself bleeding, you know, like all that stuff. And then.

Yes, so similar to what Lar was saying, like pushing the pain down, trying to ignore it or just like, quote unquote dealing with it. To me that was like from that all the way to, like, even using tampons all the time instead of pads. So I don’t feel myself bleeding and stuff. And it wasn’t until my pain got so bad. And I think my, I was just so inflamed. Every time I was on my period, I could almost, I couldn’t really use tampons or if I did, I could only use the light tampons. And before we went on birth control, I think we went on, I can’t even remember. I think it was in our later teens and it was mostly for acne and it didn’t do anything for me. But once we started birth control pretty consistently, our periods weren’t super heavy. But when we first our periods first started and we were doing ballet so much, our periods were so heavy. I remember classes were like an hour and a half to two hours and I would have to use the bathroom at least once or twice to change out like a super tampon. But by the time it got to my surgery, which I think I was 29, I can’t do the math right now, but late 20s. I wasn’t even able to use tampons at all. So that’s, I mean, that alone, I was like, okay, something’s more serious here, but yeah, just the whole experience. I mean, it was traumatic. Lauren and I, actually one of the similarities we did have is after surgery, we both got post operation infections, which even our surgeon, who was a great guy, he was like, oh, you have less than one percent chance of getting a post up infection. And I remember Lar had gotten one after hers. And I was like, oh, I bet I’ll get, I’ll get one too. And the doctor was like, no, no, no, there’s no chance. Totally did. And once again, it was that that experience of being dismissed. I remember the doctor they kind of put me with after the surgery. It’s not the surgeon. You know, I would constantly call him because my, I had this low grade fever that just won’t go away. And something felt wrong. I think this was like a week and a half after my surgery. And I would call the hospital and be like, this is, I would call the doctor and say, you know, this isn’t right. Why am I having a fever? I can’t really keep food down. And I remember he just kept saying, oh, this is part of, like, surgery recovery. And he would brush it off and brush it off and brush it off. And then finally, I was talking to my mom. I was like in tears. My mom was like, that’s it. We’re just going to the emergency room. And sure enough, they like, there was an abscess. They had to drain an abscess. And I was in the hospital for another three days, which in the US, being in a hospital for three days is a long time, like Lar was in the hospital for two weeks. You know, the NHS, that’s a long time. But like three days in the US, they try to get you at a hospital as soon as possible. And it was just recovering from that. And I remember it. And the antibiotics that I had to take from that probably made me feel much worse than any surgery ever did. And I couldn’t eat. But you had to take the antibiotics and stuff. So we both, Lar and I both had that experience, too, which was us, so we, our recovery took a lot longer, I think, than most women. But just, you know, that’s another example of being kind of ignored, like after you’ve been through this very intense surgery. And like knowing your body, knowing like this doesn’t feel like just a recovery. Something’s going on. Like, my head felt like I was on fire 24/7, I think from the fever and just being dismissed after having gone through all of that, you know, and it, it just blows my mind. And then even today, like Lar was telling you, you know, I’ve had male and female gynaecologists. Before my surgery, I would tell them I had endometriosis and they would always say the same thing like Lar said, just take birth control, take pain meds. And then even after I had my surgery where I was like I have proof I have stage two, you know, and I would tell different gynecologists. I specifically remember when he was just like, oh, yeah, that’s oh, that’s rough. Like, that was literally the response. It wasn’t like, okay, well, like we understand that you stayed on birth control to kind of manage that and, you know, talk. There was there’s no discussion. I even had, I have some scar tissue. I think it’s up towards like the top of my vaginal wall. So it makes penetration with sex very painful, like full penetration. And that I didn’t start feeling until like six months after my surgery. And I remember going to the gynecologist and just, like, crying, because I was like, I don’t know what to do about this. And like the for some reason, it wasn’t my normal gynecologist. It was another woman in the practice, who was like, I think a robot. And she basically was like, well, you’re just going to have to get surgery again for that scar tissue. And I was like, but cutting away scar tissue causes more scar tissue. And she’s like, Yeah. And that was it. She was just like, you need to talk to your, and this is after and in the US, like our surgeon wasn’t covered by any insurance. He was outside that. So you’re paying so much money. I mean, a lot of women can’t get the surgery in the first place in the US because they can’t afford it. Their insurance obviously is not going to cover it. Or they cover a specific surgeon who maybe doesn’t do full excision surgery. They just do ablation and that’s not getting to the root of the cause. So, I mean, there’s all these things where you’re dealing with this medical world, too, that does not want to support you at all. But then, like, when you’re going to a gynecologist who’s supposed to be, you know, knowledgeable and be focused on female bodies, there’s like there’s it’s more like indifference than anything, which just blows my mind. 

Le’Nise: I mean, I’m nodding along as you’re talking and everything you’re saying. I am. I keep thinking it’s just trauma and then more trauma and. I want to know, everything you’re going through now. And I want to talk about the company you founded to help women have better periods. But before we talk about that, I just want to talk about how you have gotten past or if you’ve gotten past the trauma of the surgeries and everything and dealing with the various doctors and medical professionals who questioned professionals who dismissed your pain or tried to downgrade your pain.

Lauren: Yeah, I would say that I’m still working through that trauma in a lot of ways, I think it’s almost been one of the unexpected advantages to starting a company sort of about period pain is I’ve had to think about my experience more, which has been hard, but also a really positive thing, because otherwise I would have reverted back to my usual, just push it down, don’t think about it. And I still like, I think on a day to day basis, like now Cath and I talk about it so much and we have a whole community of other women who have endometriosis pain in Atlanta, but just also online and just talking to women about their period pain in general. It’s so like life affirming and empowering in some ways because you don’t feel alone. You realize everybody is different. You know, you experience pain differently. Even if I talk with another woman who has stage four endometriosis, their experiences are completely different. So there’s, there’s so much good that’s come out of this, too. But Cath and I still talk about how before we go to gynecologists, even for just a normal routine exam, like we’re like we know we’re gonna cry in the office. Like, I don’t generally especially you, Cath, I don’t think you’re a big crier, but like, I just know I feel so vulnerable in that situation. And even if I talk through with my gynecologist and I usually bring my surgical like photos, like photos from inside of my body and I’m like, this is what I had. I’ve had the experience like Cath, where it’s still sort of worn off. And so you just always feel the sort of vulnerable existence when you’re in the doctor’s office and that you have to fight like, okay, I need to get my fighting face on because I need to make sure they believe me. I need to advocate for myself. But at the same time, I’m not completely over the trauma that’s happened to me before. So I know I’m going to feel really sort of teary eyed and then the doctors aren’t going to take me seriously and all this stuff that’s usually still was playing through my head. So, yeah, I would say I’m still working through the trauma, still working through some of that pain, but there’s been a lot of positive having to go through it. 

Catherine: And I think the other thing, too, is that it seems sort of like the dark ages, but like any an gynaecologist you go to, their focus is on fertility. 

And if they you know, they they, most gynaecologists have very little experience or got very little education on endometriosis. My guess would be the same with adenomyosis and PCOS and all the other things, PMDD. And to them, it’s at least the ones that I’ve met, it to them means potentially could affect your fertility. And so even when I try to have these conversations with the gynecologist, they always turn it around to like, well, I think you could get pregnant, or especially now, since we’re with, like, geriatric moms if we ever got pregnant. Right. We’re 37, 36, 37 in two weeks. We’re 36. And so, like, when I go to the gynecologist, every discussion, it’s always like, do you want to freeze your eggs?

Which in the States takes I think it’s like at least $20,000 to start out and like they talk about it so casually, like everybody has that amount of money, but also that that’s always how they focus on your body as basically as a baby making machine. And it I feel like even the surgeon too who we loved it, it’s still like he’s very used to having the conversation around fertility. Like, how does your endometriosis, how will that affect your fertility in that kind of thing? And both obviously, neither one of us have kids. We’re not. Neither one of us have decided whether we want kids, even though, you know, it’s getting a little late for us. But to me, it was always like, no, I. I want to focus on fixing my body first before I could even think of having, you know, a parasite. You know what I say? I was like, why? Why, why am I going to focus on kids now when, like, I’m in so much pain? But it’s just funny. The whole like the whole dialogue around it, even at doctors offices, even if they like, you know, kind of ignore your pain. It is always about fertility and how you’re basically worthy as a woman because of your level of fertility. That’s how I see it. And like Lar, I always have to prep myself before I, actually have my annual is on Monday. And I know, like, I’m going to get there early, I’m going to do breathing exercises. I’m going to be ready for the doctor to just dismiss me. Ah. You know, I want to talk about freezing my eggs again, even though I told her last time I saw her I was like, you need to write down in my file do not talk to me about freezing eggs. And even when I said that, even when I met with her last year, she was like, Really? Are you sure?

And I was like, come on, lady. You’re educated, listen to me.

So, like, it is still is like it’s something we deal with. And I think Lar said starting Semaine has kind of forced us to have those difficult conversations and revisit it. But I think that’s very healthy and something that we need to do. And it’s been so empowering and hearing other women’s stories and knowing that we’re not alone. And the fact that we could we could create this thing with Lar’s husband that actually helps women through their pain.

Le’Nise: What you’re saying about having to prepare to go and see your doctor, to see your gynecologist. I, you know, I think it’s really important because in an ideal world, we wouldn’t have to do that. We could go and our doctors would have the time to spend with us and have the time to ask questions and really figure out what’s going on in the moment. But certainly in the UK, there’s 10 minutes and you have to make the most of those 10 minutes. But I love what you’re saying about, you know, you do your breathing exercise. You’ve got your notes. Lar, you were saying you take the photos of your prior surgery. You know, you you you tell them to refer back to the notes you ask them to make on your file before. I think all of those are really important for women to remember. They have to go in prepared and be prepared to advocate for themselves. And if they don’t feel comfortable doing that, bring someone with them who can do that for them. I want to go on to talk about your company. So is it Semaine? Because I’m thinking French Semaine means week or how do you pronounce it?

Lauren: You’re completely right and you’re saying it correctly. As Americans, we say Semaine. So, yes, it is. It is the French word for the week, but, we, we, we. But you’re an American French. Oh, yes. That is the name in it. It came from from the fact that the supplement that we created, which is a plant based anti-inflammatory, is just for the week of your period or whenever you have the most pain on your cycle. Generally, even women who have sort of pain throughout their cycle, that might be the worst pain is during ovulation, maybe or maybe it’s right before your period. But for me personally, I’ve always been really bad about taking supplements continually. And so when Matt, my husband and Cath when we were creating this, I was like, I am not going to take something every single day. I won’t remember. And I don’t like the idea of having to take a pill every single day, even if it is all natural and plant based. And so because we were focusing on the inflammation aspect of period pain, rather than balancing hormones, making sure you have more estrogen or less estrogen, we we could really focus lowering that inflammation when you need it the most on your period. So in general, this is something that I had no idea about before we started Semaine. My husband did, he’s a research scientist. He has PhD in bioengineering, that on your cycle over the course of 28 days, roughly. Of course everybody’s different, but that your immune system sort of works that quickly as well. So when you’re moving into your ovulation period, your immune system pulls back a little bit, just in case you are you have foreign DNA that enters your body, you know, and you’re impregnated. So your immune system’s like, okay, we don’t we don’t want to attack that. Let’s pull back. And then if you’re not, if you’re not getting pregnant, your immune system kind of comes roaring back in the next two weeks and reaches its peak as you start to bleed. And a lot of the times with that immune system, that that causes a lot of inflammation, that your immune response and inflammation is connected. And so those of us with painful periods, not just with endometriosis, but with just painful periods in general, you’re having sort of a stronger immune response and more inflammation. So the thinking behind creating an anti-inflammatory is we’re lowering that inflammation levels So it’s all about, you know, like helping your body do its thing, have its period, but with sort of supported help of lowering the inflammation markers that are happening and causing a lot of pain. And that has been tremendously helpful for me because I know I was always sort of nervous about taking different things that regulated my hormones because there’s not a lot of research behind endometriosis, behind PCOS, behind any of these period related conditions. I think there’s not a lot of understanding of exactly how our hormones are sort of out of whack and that that can vary from person to person. So I really wanted something that could address the pain without having to be like, I don’t know, is my estrogen too high? You know, a lot of people do think endometriosis is estrogenic. So there is a link there, but they’re still not sure. I mean, again, because this is a, quote unquote, woman’s disease. The research is starting now. There’s a lot more research than there used to be, but there isn’t a lot of you know, there hasn’t been in the past. And just generally in medical history, you know, there hasn’t been a lot of research on women. I think a lot of people probably heard that that study about how women experience heart attacks different than men. But the symptoms we’re taught to look elsewhere are the symptoms that men usually have. And I remember reading, this is a study done like, you know, ten or fifteen years ago on cervical cancer. And they they tested the drug just on men who don’t have cervixes, you know, so it’s like. It blows your mind when you learn about this stuff. We were like, wait, you have to be doing these studies on women. And a big reason they don’t do the studies on women. And then prior to human subjects, why they don’t do it on on like female rats is because the hormones and having menstrual blood is very complicated and it complicates the results. And you’re like, yes. But the people taking it 50 percent plus are going to be people who have menstruated at some point and have these complex hormones. I, even when I was in the hospital actually in Edinburgh, it was a female doctor who was super sweet. But I remember at one point she said, you know, it be so much easier for us to figure out what was going on with you if you were a man, because all your bits are on the outside. 

And I was just like wait what? What is it? Oh, my God. Like, this is the extent of of medical knowledge. Sort of like really a big community. I was like, we don’t have a chance in hell. Like, how is this, this is like the the response? In starting Semaine, we’ve learned that up to 80 percent of women have painful periods in their lifetime. So this isn’t abnormal. You know, it’s like everybody has has pain and you experience at different levels. Definitely our stories are a little more acute. And having endometriosis is is something that not all women have, though. More than 10 percent of women do have endometriosis. So none of these things are super unusual. And the fact that there aren’t hardly any pharmaceutical drugs specifically for women’s pain or even a lot of like natural things that we can do on the market right now, is really telling to me the fact that women’s pain isn’t taken seriously. If there’s, if PMSand endometriosis and all those conditions were something that men experienced, we’d have gobs of research. We’d have so many, you know, if they’re 5,000 pills for erectile dysfunction but nothing for, you know, period pain specifically, except for maybe Midol or Pamprin, which hasn’t changed in the last twenty five years. Something’s wrong. Something’s broken with with innovation in health care for women. 

Catherine: I always think of that line in the show Veep. 

Did you ever watch it? I don’t know. It was. I don’t know if it would come if it was in the UK at all. Because it is very specific to the US. But it’s the main character at one point. She was like, you know, if men got pregnant, you could get an abortion in an ATM by now, you know, and that’s what I always think about. It’s like it’s like it’s so true. What I think is so cool about Semaine is that so, Lauren and Matt, after Scotland, they moved to Seattle and that’s when Lar was especially, even now, when we get cramps and stuff, I think we’re a little triggered by experiences before we had our surgery. So even though we know the pain is not going to get as bad, it’s still very triggering. And so Lar’s husband, he’s a scientist. He has a PhD and was working for the University of Washington at the time. And he started doing research and reading up on white papers and peer reviewed papers on anything that could possibly help. So he started getting all these like extracts like in powder form and adding them to her smoothies. And it was I always joke that like the few times I would like go and visit them and see had all come to their kitchen. They had all these like jars of random powders or things going on. So he played around with the formula, I would say like that two years. Right. So and Lar was telling me how much of a difference it was making and I was like, send it to me because I, you know, I’ve been in Atlanta this whole time. And they literally sent me, it was a jar you sent me like a little scoop. And with like Lar’s handwritten instructions like how many scoops they should put in a smoothie each day. And I remember the first period I had using it, like my pain was reduced so much. And when I was and it wasn’t until we started talking about it, we were like, well, if this works for us, then maybe it’ll work for other women. And that’s how it got started. Like literally from them having a kitchen full of jars with powders in them. 

Le’Nise: Wow. And so then you found that this worked for you. And then what was your, talk about the process of getting it onto the market? 

Lauren: Yeah, that was that. That’s been a long journey because we started, Matt and I started testing those different plant extract powders. So it was like powder of green tea and curcumin. And I feel like those people have maybe heard of us as far as being good anti-inflammatory as are antioxidants. But we were testing other things, like some thing called resveratrol, something called boswellia, which is from frankincense. Matt had been doing research at the University of Washington about chronic inflammation and aging. So that’s how it was sort of in his mind already about like maybe we don’t address hormones, but we address the inflammation that’s happening every month when you’re on your period. And so after about two years of trying this and Cath and I being the guinea pigs, we opened it up to a larger test group of about 10 women who had period pain. So a couple of them did have endometriosis, but most of them just had general period pain. So not just pelvic pain and cramps, but maybe they got migraines or leg pain. You know, there’s lots of different types of pain that are associated with getting your period. And we had really good results from from that test. And so after getting those results, we’re like, okay, let’s start this as a business and let’s see if we can launch this as a product. And so originally it was, we were just putting the powers in pills ourselves, but we found a manufacturer and we, Matt and I quit our jobs in Seattle, moved to Atlanta, where we’re now living with Cath, so fun. And we focus on this full time. And we started an Indiegogo campaign in the fall to just sort of raise awareness and also a way to raise a little bit of money, but mainly to get sort of the name out there and make sure people are hearing that we’re doing this thing for period pain. And then in February of this year, we launched full time. And so right now, we sell Semaine directly from our web site: semainehealth.com. But we’re hoping to branch into retail so it’s more readily available to everyone. We do ship internationally, but most of our subscribers right now are in the States just because international shipping is really expensive. But we’re hoping, you know, eventually to expand and we could have distribution centers in the UK and Australia specifically because we get a lot of great feedback from those countries. But that’s how that’s how it started. It was literally trying to find something to fix my pain. We weren’t thinking of it as a business at all. But then when Catherine was like, it’s working for me. And the woman we had in our study was like, yes, you need to make more of this. We were like, OK, we want to help other women. You know, it was such a relief to have less painful periods, the fact that we are now helping other people have less painful periods, like I couldn’t ask for a better purpose in life, really, because I just never thought that was possible. I don’t know if it was because of years of being told that, oh, this is the only thing you can do. You can go on birth control. You can take ibuprofen. That I just thought that was kind of it. It didn’t even strike me that, why aren’t there more products out there for women? You know, and I think it’s such a great time now because people are talking about periods more openly. You have this wonderful podcast where people are talking about their first periods and hearing the differences and those stories are amazing. I think it’s so great to normalize those conversations. And I think that will change the way innovation help, that happens around women’s health care. Just the fact that, you know, people are making organic pads or reusable menstrual cups and like all of like The Honeypot Co. I don’t know if that’s big in the UK yet, but it’s here in Target that, you know, having said feminine care wipes like that, you know, something that’s in like the vernacular that we growing up, you know, we’ve never talked about that sort of thing, you know, and that wasn’t on the shelf at Target. And now you see that and women are interested in trying more natural solutions or just any solutions to try to make their periods better or more manageable and not this hush hush taboo thing that you can’t talk about.

Le’Nise: I think it’s incredible what you you both have done. And I love that you you took an issue that you had and you then created something that would not only help you, but would help loads of people with the same problems. So amazing. I can’t wait to see it here in the UK, but to round up our conversation. You both have said so many amazing things. What would you want someone to think to take listening to the podcast, to take away from what you individually have said? 

Lauren: Such a great question, Le’Nise. I would say, as hard as it is always trust yourself and advocate for yourself. You do know your body better than anybody else. Better than any doctor. Better than anybody in your family. Being in tune with your body and knowing something doesn’t feel right. Push your doctor, push your health care provider to give you answers. If I had known that when I was younger, I know I just always assumed, oh, this person went to medical school and is a doctor, they know way more than me. If something was wrong, they would tell me. And I think, you know, doctors are amazing and they’re great. And I’m so glad we have the health care available that we can go to them. But that doesn’t mean that they know you better than you know yourself. Listen to your body if something feels wrong, you know. And also listen to yourself and not just assume that because one treatment works for one person, that that’s what you need to do. I think a lot of the time in the health and wellness space, we’re like, oh, I found this diet that cured me of this thing. You know, my endo is so much better because I stopped eating gluten. That is amazing. And that works for a lot of people. But that doesn’t necessarily mean it’s going to work for you and you have to do that same thing. If birth control works for you, if you need to be able to take that in order to get to day to day life, you know, do that. Don’t ever feel ashamed because people are pushing a certain solution on you. I think that’s so important. 

Catherine: At the same exact thing, reiterate, advocate, advocate, advocate for yourself. I think that’s the big thing. 

IF I could go back in time and talk to my 12 year old ashamed self with my period, just giving myself grace, but also telling myself, like, you know, trust yourself and be comfortable with your voice, especially when you’re with doctors. And then the other thing. What Lar said exactly, we’re identical twins and we’ve had very different experiences. You know, I compared to Lar, I eat garbage, you know, like I’ll eat fast food. I love I love to drink Coke. But Lar is much healthier than me. And part of that is driven by the pain that she had and kind of the PTSD left over from her experiences. But for me, diet does help. Absolutely. Without a doubt. But if I had just started looking into not just endometriosis but period pain and seeing all these like wellness warriors who can, you know, eat just kale for a day and, you know, that works for them, that I would feel kind of alienated from that. So I think reiterating what Lar said, like you figure out what works for you and then give yourself grace. You know, you’re not going to be this perfect pinnacle of health and you’re gonna have bad days and good days and and just celebrate the things that do work. But, yeah. That that some women don’t want to use tampons or don’t want to use hormonal birth control. And that is great. But some women would do. And that’s also great. So giving yourself grace and and figuring out, like Lar said, become an expert of your own body and what works for you. 

Le’Nise: Thank you so much. I honestly feel like I could talk to you guys for another hour. It was just so brilliant.

Lauren: Thank you so much, Le’Nise. So much fun.

Le’Nise: You mentioned the website URL before. Can you just mention it again? So listeners know where to find out about Semaine.  

Lauren: Yes, thank you. It’s semainehealth.com And we’re also very active on Instagram. So and that’s just @semainehealth. So thank you so much , Le’Nise. Yes, that’s where you can find us. We’re there all the time. We also have a chat on our web site, and that’s us answering questions. We love when people pepper us with questions about Semaine. So please feel free to do that.

Le’Nise: Thank you so much.

Period Story Podcast, Episode 34: Camilla Hansson, Period Pain Stopped Me From Living Life Fully

On today’s episode, I’m happy to share my conversation with Camilla Hansson, the founder of the CBD brand, Camilla Organics. Camilla shared the story of her diagnosis with endometriosis, her healing journey and what led her to launch her CBD business. And of course, we talked about her first period!

Camilla says that she looked forward to her first period because she felt that it would mean that she was nearly a woman. She said when it finally happened, she was quite excited about it!

All the way through her teens and into her mid 20s, Camilla had what she called perfect periods: no pain, no mood swings. In her mid 20s, she says she started to get excruciating, painful periods that sent her to A&E on several occasions.

Camilla says that she started to become afraid of each of her periods and she felt she couldn’t live her life fully because of the pain. Listen to hear how Camilla found a path to healing.

Camilla says her experience led her to an exploration of CBD and then to eventually found her own company so that she could help other women in the same way that CBD helped her.

Camilla says that it’s important for anyone suffering from period pain and endometriosis to not give up hope and to keep educating yourself and trying new things. Thank you for coming on the show, Camilla!

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CAMILLA’S BIO

Camilla Hansson is the founder of Camilla Organics, a company that provides premium CBD products made for women.

Camilla started the company after suffering from painful menstrual cramps and found that CBD was the only thing that gave her relief. Before starting Camilla Organics, Camilla spent years working as an international model and won the Miss Sweden competition in 2014. Camilla loves health and wellness and has studied nutrition and natural medicine at the College of Naturopathic Medicine in London.

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SHOW TRANSCRIPT

Le’Nise: Welcome to the show.

Camilla: Thank you for having me.

Le’Nise: So let’s start off by getting into the story of your first period. Do you remember what happened? And can you share it with us?

Camilla: Yes. So it happened where I grew up, which is in Stockholm, Sweden. And I think I was about 12 or 13 years old. So I remember a nurse coming into our school telling, telling us all about, you know, periods. And around what sort of age it would happen. And then I also remember some of my friends telling me that, you know, they have received their periods. So I sort of knew that it would happen some at some point soon at that age. And I remember sort of looking forward to it, almost like I remember thinking that, you know, once I get my period, that means I’m sort of a woman. And so I saw it in quite like a positive light then and also. Yeah. So when it happened, it just felt quite smooth, natural. And I remember being quite excited about it, actually. 

Le’Nise: And so you were excited. And what happened next, so when you actually got your period? Were you, did you speak to anyone right afterwards? 

Camilla: That’s a good question. I’m pretty sure I told my my, mother about it. And so, you know, we went out and we bought the pads and, and then. Yeah. I mean, it’s in our family, it’s not we don’t talk so openly about these sort of things. So I think it was more just like me talking to my friends more like about what they were doing and their experiences. And so it was more like, you know, a little bit of a like a rumour going around, like this is how it is. This is what you should do. So I think that’s where the education came from, a little bit, from my school, because I must say in Sweden, the education system is very good. And then just, you know, just by talking to my friends and, you know, we’re just trying to figure out what it is. Yeah. And how to handle it.

Le’Nise: And you said that the education is quite good in Sweden. And did you find that you, so you live in London now, if you think about the way that people talk about periods and menstrual health in the UK, how would you compare that to the way that you learnt about it in Sweden?

Camilla: Well, I think it’s I guess it’s still a taboo topic everywhere. But in Sweden, they’re not so afraid to bring those subjects, to be honest. Even today, you know, like women talking about it on social media. Swedish women, it’s just like one of these things. I think Swedish people can be quite outspoken. And, um, so. Yeah. And like I said. So it was, I don’t know how it would have been compared to the UK. But like I said, in Sweden, it was quite good in terms of the school bringing in, you know, like nurses and even the teachers of telling us about it.

Le’Nise: The openness around the way that you learnt about your period translated to the way that you felt about your period? So feeling really open and being able to talk about it?

Camilla: Yes, I think I think that makes sense that it would be like that. But like I said, so like early on, I didn’t have an issue with it. For me, my issue is if that’s the right word, around periods actually came later on in life, like more like it. Like late mid 20s, late 20s. So up until that point, you know, my my periods were perfect. Like, I didn’t even have mood swings. Like I didn’t I didn’t feel a difference just because I was on my period. And I remember everyone talking about how bad they feel on their periods. And I just thought, oh, but I just I just feel the same. But then I can’t say exactly what happened. But then, yeah, around my mid 20s, I started getting excruciating, painful periods. Like, I remember, you know, I was going to the A&E several times and just, you know, that couldn’t really do much. Like, they just gave me strong painkillers that didn’t really work very well for me. And I remember just like trying acupuncture, you know, herbal medicine and all these things that I really do believe in. But for some reason, it just didn’t really help me at the time. And and it really started to like, you know, ruin my life because I was so afraid of each of my periods. You know, I knew that, you know, I knew that this dreadful time was to come for me and and, you know, just to have that in your head all the time was like very stressful. And I just really felt that couldn’t live my life fully. And there was such a big part of my life that I was missing out on because I was at home, you know, in pain. And I just felt like there was something really wrong with me as well. Which makes you I don’t know, it it affects how you see yourself. So I really I really, really struggled with my periods for a few years in my mid 20s. And then, yeah, so I, so when I did go to a gynaecologist, eventually he said that he was almost sure that I had endometriosis because he found like a cyst in my ovary and his solution was to do surgery. But I always felt that I don’t know, I just I’m I’m very scared of doing things like that. And then also I’ve read online that even people who do the surgery, it comes back because you haven’t actually healed the root cause of why it’s happening. So. So what happened to me was that, so I tried everything. And then eventually a friend of mine who’s a doctor who lives in Denmark gave me some CBD. And I think a lot of your guests of your podcast talked about this from what I seen. So which is good, actually. You know, it’s good that we talk about it because if people are really suffering, you know, then it’s it’s good to share your experience and you know what’s helped us and maybe it can help someone else. Yeah. 

So basically, a doctor friend of mine gave me some CBD. And one day when I was in a lot of pain, I took some and it was it was like a high strength, like 16 percent. And. And basically, miraculously, the thing was just gone like after 20 minutes, like, I actually couldn’t believe it.

And because I wasn’t sure whether it’s, you know, because time had passed that I felt better or if it was the CBD, you know, I just I took it another time. I remember it was at school at CNM where we both have studied. And I just remember feeling so much pain. I just didn’t know what to do. Like, I couldn’t move. But, like, I. I even thought, like, how am I going to get home? I can’t even go down the stairs to take an Uber. And then obviously, like, as fate had it, well, not obviously. But as luck would have it, this girl next to me, I saw her taking some CBD earlier. And so I asked her if she, if she could give me some. And she did. And then exactly the same thing happened like 20 minutes later. The pain was gone for the rest of the day. And so so this thing kept happening. Right. And so I was like. This is interesting. Like, there’s obviously something here. So I started reading about online, but there was very limited, you know, there wasn’t really any research about it. And, you know, women’s, women’s health is an under researched topic. In any case. And. But I just I felt really strongly liked that this is there is something here. So and obviously my passion in life is natural medicine, holistic health, wellness. So I was I was looking for a business to start in that area at the time. And then, you know, I came across CBD and I had this experience with it. And I just felt like I wanted other women to know that this was something that could potentially help them. So, yeah. So then I developed the product. 

Le’Nise: But before you go into your business and starting the business, I want to talk more about your journey to your endometriosis diagnosis, because what we know is that it takes an average of between 7 to 10 years to get a full diagnosis for endometriosis. Talk about how you, you’ve said that you explored lots of different avenues until you finally got a diagnosis from that doctor who then wanted to do the surgery. Talk about how long it took you to get to that point. 

Camilla: Yes. I mean, I think now the doctors, it feels like they’ve become a little bit more knowledgeable about it. But I’m not, I’m not sure. But in my case, when I did go to the emergency, to be honest, he did sort of mention endometriosis. I never heard about it at that time. But he was like, “Painful periods, yeah, probably endometriosis.” But, but still. Yeah. I mean, he just gave me some painkillers. So how long did that take? I would say I would say maybe three through to six months.

Le’Nise: Oh, OK. That’s very, very, very fast.

Camilla:  Yeah. Maybe I just went, you know, maybe in the UK, they’re quite good. Just went to the right people. But yeah. Yeah. When I said period pain, their immediate reaction was probably they said endometriosis. Yeah. 

Le’Nise: And to go then to have the level of pain that you have to go to A&E and you describe that moment when you were at college where you weren’t able to even get up. That’s, that’s I think it’s when we talk about pain, I often say this a lot with my clients is that we have to describe the pain because pain can be so different depending on the person. But, you know, even if thinking about that, the pain that you were in to have to go to A&E, that must have just been an incredible amount of pain for you to even take the step to go there. 

Camilla: Oh, yes, exactly. Because, I mean, I remember I was actually living with a friend at a time and like she just like, she was watching it. She just she couldn’t believe it. Like, I was on the floor screaming, you know, like my pain was 10 out of 10. Like, I, I, you know, I think at some point I fainted. And it was really like, you know, you really want to die, basically. And I tried to take painkillers and everything, but it didn’t work for me. Like, it just didn’t. Nothing worked. One thing that worked a little bit was to take a very, very hot bath and put a lot of magnesium salts into it, because obviously magnesium relaxes the muscles on, you know, the muscles contracted in the uterus that makes it painful. But no, it was very, very painful. And then to have that fear all the time that, you know, my period is coming up and, you know, I’m not gonna be in this much pain again. Like to live in that constant fear and not, you know, also imagine, how do you plan your life when when when you know that you’re going to be in that much pain? I mean, you have to obviously plan your life in terms of like, OK, I’m going to have my period, so I’m going to have to stay at home. I’m not going to book anything and not any work, etc.. And just for me, it really like took over my whole life, like it was the only thing I could think about, you know. 

Le’Nise: And you got the diagnosis and then you started exploring CBD as a potential solution. You mentioned those two moments where you had tried it. And yes, I’ve had I think I’ve had about three. I’ve definitely had four or five guests on the show who talked about CBD, whether it’s been their business or actually using it as a as a tool to manage period pain. And I, I am personally getting more and more fascinated with it because it’s just the the amount of things that the that it can work on the areas that it can work home from pain to anxiety to depression. It’s just, it’s just mind blowing. In your your business, so you started. You had this experience and you decided to start your company, Camilla Organics. Talk about your journey as an entrepreneur, from having this idea and then going into actually developing the business.

Camilla: Yes. So, you know, so like I said, the pain kept happening. And then I kept taking the CBD and the pain kept disappearing. So I started looking into, you know, as much as I started looking into it. And I read online that, you know, they’ve used cannabis, which ultimately is, you know, CBD comes from the cannabis plant with the hemp plant, but it’s the same family. And they’ve used cannabis in Chinese medicine for, you know, hundreds of years to treat menstrual cramps. And, you know, we know that Queen Victoria was using it for menstrual cramps. But, you know, this is very limited information. 

Le’Nise: And I didn’t know that Queen Victoria, so did she smoke the cannabis or?

Camilla: Interesting question. I just can’t picture it. I just, I just read articles that her doctor talks about, you know, how fantastic cannabis is for menstrual cramps and how Queen Victoria was using it. And I don’t know if it’s more of a rumour, but it’s it’s. But I don’t know how she was taking it, to be honest, it doesn’t actually say any of the papers I’ve read. But that’s an interesting one. And so and so when I started, it really wasn’t much information. There wasn’t even a lot of people sharing their stories, you know. But I just felt like, I knew that CBD helps with inflammation. And so I thought, OK, well, obviously period pain has to do with inflammation. And, you know, now when I read on it, I you know, CBD helps relax muscles in the uterus and we have receptors for CBD in our bodies and especially in our reproductive area. It’s actually the second highest place in our body where we have these receptors for, you know, endocannabinoids like CBD. And but my journey to actually start the product was I just felt that I wanted to talk more about this topic. I wanted to share my experience to that because I felt like that could potentially help other women. And so I wanted to bring out a unique product that would support women during their periods. And so I you know, I’ve studied natural medicine, but I, I still didn’t feel completely qualified to put it together myself. 

So I went to a CBD developer whom I met at CBD sort of exhibition event who is so passionate about CBD and his whole life, CBD and his life work. You know, he’s been studying cannabis for like 20 years. And so he also has a manufacturing company now. And so he developed the product for me. He put together the herbs that we put into it, the strength of the CBD, which is 15 percent. I was, but I felt very strongly that it had to be at least that percentage for it to have an effect. And and we put in specific terpenes. And so together, these ingredients have something called an entourage effect where they become more powerful together than if you would take each one of them on on its own. And so I gave it to, was about 100 women who suffered from period pain. And the feedback was incredible. Like more. It was more if I felt that it was like more effective people taking it for PMS and menstrual pain than for anything else that CBD can do, like, you know, like sleep or anxiety. It was just the feedback from menstrual cramps and PMS was especially good. And so then I just felt really encouraged to to to to go out with this product. And so I did.

Le’Nise: You did this survey of a hundred women who got really. They gave you really good feedback. And did they say that it was something that they wanted to continue using as part of their period or menstrual health toolkit?

Camilla: Yeah, no, exactly. I mean, they said that, you know, because of the product, they can go to work. Now, they don’t have to be bed bound. And some of them, like me, had also tried, you know, everything else without success. And and and, you know, yeah, they had some of them had some sort of like the pain was, is gone after a few minutes. But, you know, everyone reacts to CBD differently. It’s like it’s like any kind of medication or product, like what works for one person doesn’t necessarily work for another person. But overall, the feedback was very, very good. And like me, like, you know, it’s like the number one product during your period. For them as well. 

Le’Nise: As I was saying earlier, I really, I really love CBD and I use it during the first couple of days of my period. I use it all across my abdomen. And it’s just, it’s just so, it’s so powerful. And what I love about it is that it’s a growing area. And the industry, because it’s so new, you see a lot of female entrepreneurs in this space. Whereas, you know, in other industries, it depends on the industry, but it can be more male. But this is very much seems like very female, certainly now. Talk about your, your experience being a woman in the CBD industry.

Camilla: Yeah, no, you’re right. I, I met a lot of incredible women in this space who have their own CBD business. I don’t know if it’s because somebody it feels like it can help us women especially because, you know, maybe we suffer more from these things. Like I mean, I’m not sure, but I’m just guessing like, you know, maybe we need that extra support because of our hormones and mood swings. So, yeah, it seems like women especially are just so passionate about it. But no, it’s been really good being a woman in this space. And like I said, I met a lot of incredible people and I felt a lot of support, both from women and men. I’ve had definitely, you know, men especially, also helping me in terms of supporting me to make this happen. And, yeah, I think it’s it’s just been it’s been really an interesting and good journey. And I think, like being a woman has, I know some people say, like they find it more difficult being a woman in business, but I’ve never actually felt that like I’ve never had that experience where it’s like, oh, because I’m a woman this person talks to me differently in a business meeting. I think, you know, if you want something to happen and if you believe in your product, you’re just going to make it happen. You know what I mean? Like, you can always find those negative things and excuses and this and that. But at the end of the day, people can see if you’re passionate about what you do and if you believe it. And. And so I’ve never, I’ve never been a person who let something like that hold me back. Like, I mean, you know, I’ve always just gone for what I believe in and made it happen kind of thing.

Le’Nise: I want to talk a little bit more about your, your story with your period right now. So you went on this journey with endometriosis. You’re using CBD as a tool to manage your period pain. How do you feel about your period now?

Camilla: So now because I’ve learnt more about my body and periods, I actually try. I work for myself. So I’m blessed in that way that I actually try to make sure my schedule is a bit slower when I have my period, you know, because I feel that my body is a bit more tired. I’m not, as, you know, alert. I’m not as happy, unfortunately, in some ways. And so I just feel like it’s better for me not to put in maybe like my most important speeches during that time. And I try. It doesn’t always work out this way, but I try to just, you know, work from home those days and take a little bit more easy, not be a social. And because of that, I actually quite enjoy it. It’s like it’s time for me to just recharge a little bit more. And I actually don’t have painful periods anymore. I’m sure it’s a combination of factors. But I I’ve also heard other women say this, that if they take CBD regularly, like every day, then, you know, it can help not getting that excruciating pain to start with, you know, because you have the CBD in your body. And I also feel like it has a healing effect. So I actually don’t get, like, pain anymore. I definitely get mood swings like I can, I feel very unbalanced. But then again, you know, I think CBD helps with that because it helps you feel more balanced. So definitely helps my mood. But I just try to take it more easy, you know, and in that way, I enjoy it more. Well, rather than trying to do the same things that I do when I’m not on my period, that just really, really overwhelms me and stresses me out, actually.

Le’Nise: You found a way to, to find a balance with your period where the pain has reduced, it doesn’t dominate your life anymore and you’re in a place where, you know, you actually kind of enjoy those days because you slow down. I know people listening will say, well, I have period pain. Tell me what you did. Tell me. Tell me more about the CBD.

So talk a little bit about the products that you’ve been that you’ve been using to reduce your period pain.

Camilla: So for me, the things that worked for me apart from CBD a little bit is, you know, magnesium to take it early, but also to do, you know, let’s say you’re in a lot of pain. I would say, you know, if you don’t have CBD, you just take a super hot bath with a lot of Epsom salt or magnesium salt in it. 

That was the one thing that helped me a little bit, to be honest, before I came across CBD and then obviously just, you know, manage stress, like, you know, if you can meditate, you can do yoga, just, you know, try to reduce stress because also stress will create more, potentially more cramps and pain in your body during your period. And then. So, yeah. So I think for me that’s that’s been like those three things like, you know, maybe magnesium and then to lower my stress levels during my period so I don’t feel overwhelmed. And then CBD, you know, like. But then I would say, like, if you’re going to try CBD, like make sure it’s a good strength. Like I would say personally like 15 percent strength. Because what also happens is like people go and buy like a one percent strength CBD and then it doesn’t do anything and then they discredit CBD. So you always need to make sure you buy a really, really high quality product that’s also high strength. That’s that’s if you’re going to try it. Which I would suggest, because if you’re really suffering from something like menstrual cramps, it is a good thing to try. And I would try taking it every day for maybe three months. Like, for me, it worked instantly. But I think, like any herb, like, you know, or any supplement, you should really, you know, give us three months and take it every day. That’s what I would suggest to try. Yeah.

Le’Nise If someone listening has period pain, you’re saying try and get some CBD with at least 15 percent strength. And when you say 15 percent strength, is that the amount of actual CBD in it?

Camilla: Yes. Yeah.

Le’Nise: And how do you recommend that people take it? Do you take it topically? Do you take it orally? What do I do? What do you recommend? 

Camilla: No, that’s a good question. I personally just take the CBD oil orally and it does the job for me. Then of course, I know some people do suppositories. And I think that probably is very effective because it goes directly into your, you know, into your reproductive area. And balms I’ve heard are effective, I’ve never tried that myself. So I’d be curious to try that as well. But. But for me, the oil just does the job. So we’re definitely going to expand our product range. But for now, because I feel, you know, it does what it needs to do. I’m quite, I’m quite happy and confident just doing the oil for now that you take orally.

Le’Nise: Yeah. Okay. So in your range, you have you have an oil and people can take that or orally and do you suggest taking it under the tongue?

Camilla: Yes. So you have to take it under the tongue because that’s where it gets absorbed the best by the body. And then you wait like one minute before you swallow. And that’s how the oil gets absorbed.

Le’Nise: OK. OK. That’s interesting. I personally have never taken it taken CBD orally, apart from I’ve had some CBD tea, which was nice. I don’t know that it did anything. I usually take it topically, as I say, all all over my abdomen. And it’s incredible. It’s like literally I feel the difference, within about five, five minutes. Wow. Yeah. It’s I just I just love it. And I never thought that I would get into CBD. I remember when I was, even like a couple of years ago, I was really sceptical about it. But now I’m a complete convert, which is probably why I have so many guests on the show to talk about CBD. 

Camilla: You’ve attracted them to you.

Le’Nise: Yeah.

So if people want to find more out more about your product, tell us more about how they can find out about your CBD oil.

Camilla: Well, yeah. So our website is www.camillaorganics.com. And our Instagram is @camillaorganics. So they can, if they want to know and if they have any questions, anything, you can just either email us or send us a DM. We’re happy to chat and just for you guys to reach out. Or if you have any questions around CBD or the products, you know we’re here to help, to educate. So, yeah, I’d love to hear from your followers there. Or they can send me a, you know, an Instagram message at @camillahanssonofficial. I’m happy to chat there as well. And yes, so for now, we sell, we sell the products online on the Web site. 

Le’Nise: OK. And thinking about your story and your journey through period pain, endometriosis and to where you are now, if you could leave listeners with one thing, one little nugget from everything that you’ve said. What would you want that to be? 

Camilla: That if you are suffering from something like endometriosis or menstrual cramps, that there is still hope. You know, I like I have. I was suffering from that. And and, you know, I have found relief like I’m not, it’s not something it takes over my life anymore. So I, just don’t give up hope. You know, keep keep trying things. Keep reading about, keep educating yourself. And I do believe, you know, that that that there is relief out there to be found. Even though I know it’s like it’s a it is a very complex disease. It’s a very serious disease. I don’t want to minimise that. But I can say that, you know, I have it and and and I’m not in pain anymore. So I’ve found ways that works for me. And and and I hope that, you know, if your listeners are suffering from this specific issue, that they will, too, and that there is hope.

Le’Nise: There is there is hope. I think that’s a really inspiring message. And I love that you left us with that with that message because I think definitely that endometriosis, as you say, is a complex disease. And what I’ve seen is that sometimes people, the pain dominates their lives and they can feel hopeless. But so for you to say as if someone with endometriosis to say that there is hope and to talk about your own inspiring journey is so, so powerful. Thank you so much for coming on the show. It’s been brilliant to have you here.

Camilla: Thank you so much for having me and letting me share my story. Yeah. Thank you so much.

Period Story Podcast, Episode 30: Trisha Barker, Stick To Your Guns And Fight For What You Want

On today’s episode of Period Story podcast, I had the pleasure of speaking with Trisha Barker, a life coach who helps people manage and overcome imposter syndrome. Listen to hear our conversation about Trisha’s endometriosis journey, how she fought for a diagnosis, how she manages the endometriosis pain, how she’s incorporated menstrual cycle awareness into her day to day work life and of course, her first period.

Trisha says that when she was shocked when she first got her period. She had a stomachache and thought to herself: “Am I dying?”. Her mum was there to reassure her and explain to her what happened. Trisha says that she felt really embarrassed and ashamed about what was happening to her and it took her until her forties to get past the shame.

Trisha went on a long journey of trying to deal with her heavy and painful periods, for years using the pill to do this. She eventually decided that she didn’t want to be on the pill because she didn’t believe it was good for her health. After she came off the pill, her period pain boomeranged back.

Listen to hear what happened when Trisha tried to get the bottom of what was behind her excruciating period pain and the moment where she refused to leave her GP’s office until he gave her a solution that didn’t involve more pills.

Trisha explains that coming off the pill helped her connect with her menstrual cycle. She says she wanted to be back in tune with her own body. Trisha shares how she was able to spot patterns through her menstrual cycles and adapt her work accordingly.

Trisha shares some advice for people struggling with imposter syndrome and the key questions they need to ask themselves to move past it. She says that we can ask ourselves better questions and start to find evidence to prove that our imposter doesn’t know everything. Trisha says that when you change what you believe about yourself, you change how you show up in the world. Thank you, Trisha!

Get in touch with Trisha:

Website

Instagram

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TRISHA’S BIO

Founder of the Imposter Syndrome Solution, Trisha is a Life Coach and NLP Practitioner who is on a mission to help people stop doubting their abilities and believe in themselves, so they can thrive in their career and life.

Trisha’s work brings together her training as a Life Coach and NLP Practitioner, a 20 + year career in Human Resources working for some of the largest FTSE 100 companies in the UK and her own personal pursuit of dissolving imposter syndrome and focusing on her personal wellbeing.

She works with organisations and individuals to help them understand how Imposter Syndrome is impacting their business and careers, whilst helping them to build a toolkit to manage and overcome Imposter Syndrome.

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SHOW TRANSCRIPT

Le’Nise: On today’s episode, we have Trisha Barker, founder of the Imposter Syndrome Solution. Trisha is a life coach and NLP practitioner who is on a mission to help people stop belittling their abilities and believe in themselves so they can thrive in their career and life. She works with organisations and individuals to help them understand how imposter syndrome is impacting their business and careers, whilst helping them to build a toolkit to manage and overcome imposter syndrome. Welcome to the show.

Trisha: Hi, thanks for having me.

Le’Nise: So let’s get right into it. Can you tell me the story of your very first period? 

Trisha: Yeah. A little bit of a blur. I can’t remember the exact age. I think it was about 11 or 12. So very, I see that as a young age to start. And I’d been at a friend’s sleep over. It was a friend’s birthday. We’d all gone to have a sleepover. And I remember having really bad stomach pains. But I didn’t want to leave because it was this party. But in the end, the girl’s mum had to ring my mum to come and collect me. I went home and just thought I had a stomachache. And then I actually went to the toilet at some point and saw blood. And I remember at the time, thinking, “Am I dying?”. Well, I, I if if I was taught about periods beforehand, at that moment in time, I didn’t remember any of it. Like I just didn’t know what was happening to me. And I remember calling my mum and my mum coming in and saying, “it’s OK, you’ve just started your period, here are some sanitary pads.” And that was my literal experience.

Le’Nise: So your mind just went blank in that moment?

Trisha: Thinking back now. I’m not sure whether it went blank or I’d never had. I can’t remember whether we touched on these subjects at school. I can’t remember ever having a conversation with my mom where this was normalised for me. I can’t remember. I just remember at the time being so shocked that I thought I was dying. 

Le’Nise: And then what happened after you got over your initial shock? 

Trisha: We just didn’t know, in the house, and it’s really weird because I was brought up in a house full of older sisters, just so it wasn’t a subject we spoke about. You know, I was given the sanitary towels, told it would happen each month, and then that was it, really. And then you just carried on. And like I said, I was quite young. So starting to have periods at a really young age at high school was quite a horrible thing. Like it was. I felt so shameful. I don’t know whether other people feel like that, but you’ve got this thing that’s happening to you and you don’t really understand what’s happening. And you’ve got to go around your day to day thing. We know that actually the energy and how you feel at that time, you don’t really want to be going out there into the world, but you’ve got to go out. And back in those days, it were really big, fat, thick sanitary pads. So you’re trying to wear those in your school uniform and you had a skirt on, so you felt a little bit like vulnerable. So, yeah, it’s just I just remember that at that time in my life, I just felt like they were horrible and I felt really embarrassed and shameful about it.

Le’Nise: How long do you think it took you to get over that shame? Get past that shame?

Trisha: Oh, till I was in my forties. Oh, yeah. Because I think you go from school, then you go to college or whatever career path you take, and then you go into the workplace and in the workplace, it’s still a thing that we don’t talk about. I always say this to people. You know, you used to put your Tampax up your sleeve to go to the toilet, you just, in the workplace, it’s another taboo subject. So in school and in the workplace, it’s just as women we’re trying to hide this thing that happens each month. We’re trying to be, peppy, you know, and act like our energy is high when actually we feel really low in energy. And yeah, I just think it’s this whole thing until I was in probably my 40s and started to understand about periods, then that was it. I just I will talk about it to anybody and everybody know that. 

Le’Nise: I want to go back to what you said about you growing in a house with your mum up in a house with your mum and your older sister. But it wasn’t really spoken about. Why do you think that is? Why do you think you didn’t have that? That those conversations? 

Trisha: It’s an interesting one. I’m not really sure because we are very open about lots of subjects. 

I don’t know whether it was the time. 

Whether it’s the education now that I think it’s so important that we should be talking about these subjects. I just think it was the time that we just didn’t talk about those sorts of things. I don’t think there’s any particular reason why it was avoided. 

No, not sure. 

Le’Nise: You didn’t really have the conversations at home and you said that you didn’t really remember being taught about it in school. So how did you learn about what was happening with your body? 

Trisha: Really to really understand what was happening again back in my 40s. When I spoke to my mum, she told me that I would have a period every month and I would bleed for a few days. So once it started to happen, we had that conversation. She did tell me that. That’s all I thought it was. I thought there was this period of time that I would bleed each month and that was it. But never do we really understand as a woman what happens in our body each month and what are the different cycles we go through in that moment. You know, every woman who I speak to now, they know about the maybe PMT, before they have a period, they know about that period. And that’s it. So I think even anybody at any age, the education of what happens to us women is really limited. 

Le’Nise: So for you personally now, you know, you’re talking about going beyond what happened during period and that week before. Yeah. What was that light bulb moment for you? Or was it more of a gradual kind of learning about what was going on? 

Trisha: Yes, I think for a long time, I sort of masked what was happening in my body, so when I was I would say late teens, the pain I used to have with my period and really heavy periods when I was at that age. My mum took me to the doctor and the doctor decided to put me on the contraceptive pill because that would be a really good fix to stop that happening. So for a long period of time, I didn’t have that natural cycle. It was being driven by a contraceptive pill. So for a long period of time, you get out of sync with your body, don’t you, because you’re not really in tune with it anymore. And I wish now we would have said, no, that’s not the reason. That’s not the solution to the problem. Let’s find out what the problem is. So for many years, I used the contraceptive pill. It was only sort of, I would say, in my mid to late 30s, I decided I didn’t want to spend so much time on the contraceptive pill. It’s not, I didn’t think it was good for my health. And that’s when I really started to feel again, what happens each month? And I went to the doctors. I remember it was about, about five years ago, still having these horrendous pains are trying to, you know, I had a job where each month I was just hoping and praying that I wouldn’t be out and about somewhere because the pain was excruciating. Like, I’ve never had a baby and I’ve got a really good pain threshold. But that first day of my cycle is horrendous. The pain is so intense. Nothing stops it. And I went to the doctor and interestingly, again, tried to give me a pill. Well, we’ll give you an anti-spasm. And I was like, no, there’s something. I want to know why my body’s doing this. I don’t want the fix. I want to find what is the root cause. And I had to really push, really push. She was having none of it. And I ended up getting referred. And in the end, I went through this whole process of different tests and I had endometriosis and I probably had it when I was a young girl. So that sort of sparked me into this whole, I need to know more about my body, like, how have I missed this all this time? And hindsight’s a wonderful thing, isn’t it? But I think that sparked this whole interest. And I was chatting to someone about after, I had an operation for the endometriosis. So then I didn’t have the pain each month. But then I was chatting to someone about I felt like I was really full of ideas last month, last week. And I felt like I was really on top of things. And this week I just feel a bit sluggish. I don’t know why. I don’t know what’s wrong with me, thinking there was something wrong with me. And she said, “Have you ever learnt about your cycle, your monthly cycle? And she recommended a book to me. And that’s when things started to change for me. So that was that was only like three years ago. Like, you know, I’m at a stage of my life where I’m not going to be. I’m moving into the stage where I’m moving towards the menopause. I wish I had known this earlier, but, I look at it now that I know this magic now and I didn’t know it before, but at least I do now. 

Le’Nise: Going back to the pain that you were experiencing as a teenager. Yes. And then going on to the pill. Did the pill, you used the word masked. Did it feel like the pill masked the pain that you did you experience any pain or?

Trisha: No pain, took it away completely.

Le’Nise: OK. And then once you came off the pill, what was it like that transition of the pill to then having natural cycles and really and then experiencing the pain again? 

Trisha: I think I felt much more emotional because, you know, I think for me on the pill, you don’t get those different fluctuations in the hormones, so you feel the same, all month long. And I remember coming off, I just felt a little bit like all over the place, like, should I just go back on it? Because I feel really bizarre. But I remember just thinking, let’s just ride through it and see what happens. I want to be back in tune with my own body. I don’t want to be taking this forever. 

So, yeah. I remember at the time. Just feeling a lot of the feels like what’s going on with me? 

I’m a woman and that’s what was going on with me. 

Le’Nise: And getting that diagnosis of endometriosis so far into time that you have that you have your period getting that. How? How did you. You said that, you know, you wish you had known earlier, but how did that information impact, did it impact your day to day life or was it a feeling of, OK, now I know what’s going on? 

Trisha: I think it’s the same with a lot of things, it’s just nice to sometimes have a label to understand what is going on. I think, you know, you go to see a doctor and you’ve got a 10 minute slot to explain what is going on with you. The majority of the time it’s a male doctor who doesn’t under really understand, they might know it from a medical point of view, but from experience in it, they don’t understand it. For me, it was just nice to, now I know what’s been going on, and I felt really proud actually that I’d fought to find out what was happening, rather than accepting another prescription of another different type of pill to mask the pain. So for me, it was a relief. It was a relief and a relief that actually I could, I had surgery. That was the thing that helped me, unfortunately, it has come back so I’m experiencing it again. But at the time, it was just nice to be heard and listened. The surgeon that worked on the endometriosis, he was like, “this is what I think you’ve got. And I am the only person who can find this. Any of the tests that they send you for will not work.” It took to speak to that specialist, to have that conversation about my body that everybody I spoke to along the way kept saying there’s nothing medically wrong with you. 

Le’Nise: And you said that you had, so you had the surgery and then but now it’s come back. Did you change anything after you had the surgery? Did you did you change anything in your life or did it make the way that you approach your life any different? 

Trisha: No. It just gave me, maybe not the fear. So sometimes, like I said, I was working in a corporate job at the time and I could be up and down the country. I could be in a really important presentation day. I never knew what was going to happen. And so that fear was I always wanted to try and work from home my first day of my cycle. So I think when the when I didn’t have the endometriosis anymore, I didn’t have the pain. So then I had this freedom of well, it doesn’t matter where it happens. Like, yes, I would prefer to be able to hunker down and, you know, feel into the slowing down energy. But, yeah, the fear disappeared because it was OK to be out in public and not worry about having to handle this pain situation that I wouldn’t have. I remember once driving along in my car when it started and I couldn’t drive like I couldn’t focus on driving and managing the pain and I had to pull over and wait for it to go. So I didn’t have any of that anymore. Like it was. It was such a freedom. 

Le’Nise: And and now that you said that the pain, the pain has come back, so. Yeah. Is it as bad as it was before? And how are you managing the pain? 

Trisha: I would say now it’s worse, when it does come back so. How do I manage it? Nothing seems to work like I’m very fortunate. I don’t know. I don’t think anything in life is a coincidence, but it always seems to work on a day where I don’t have much, I don’t have any client work or it’s a weekend day when I have no plans or actually I cancel the plans if I have got plans, now, I honour my cycle and know that I just need to rest. But yeah, I need to go back to the doctor’s. But until we can go back to having doctor’s appointments. But yeah, that’s one of the things that I need to push for because they all get into a point where, yeah, it’s really effecting me. And then because the pain is so bad, I’m exhausted for a couple of days afterwards because of the trauma of going through the pain, but also the sometimes that the pain is all through the night. So I miss a night’s sleep. 

Le’Nise: So we’ve had on the show we’ve had three or four guests with endometriosis and a theme that has run through all of the conversations about their endometriosis, no matter what stage endometriosis they they have is this idea of being their pain or their experience being minimised or dismissed by health care professionals and feeling like they’ve really had to fight and advocate for themselves. What would you say in that in in that sort of theme, what would you say that your experience has been? You know, you mentioned the word fight earlier and to fight for a diagnosis. Can you talk a bit more about that? 

Trisha: So when I went to, the doctors, they were very much of the mindset of you’ve got that 10 minute slot, I will give you a pill to fix the problem. And I took that prescription the first time, tried them when my monthly cycle came round again the first day of my period. I tried these tablets. They did not work. So I went back again and I remember him trying to give me a different prescription. And that was at the time that I just thought, this isn’t the solution. You’re trying to give me another, I don’t like taking prescription drugs unless there’s a real need for it. So I think that sort of pushed my decision that I don’t want to take these tablets. And I just thought, this is not the solution. I need a different one and I just pushed. You know, I remember sitting there and just said, I’m not leaving. I need you to refer me to somebody else. I don’t want to take tablets. I want to get to the bottom of this. And I remember I was just quite forceful in the meeting. Like in this 10 minutes slot that you have to refer me. I think he was just shocked. 

And he did. 

But even when I went to see different professionals throughout the whole of that time. They couldn’t understand that I could have pain without heavy periods, like I wasn’t having a heavy bleed, so I saw about three different people before I saw the surgeon who did my surgery for my endometriosis. But each different person who I saw, they were adamant that there was nothing wrong with me, but they just kept trying to tell me there’s nothing there. But I had this just sense of knowing that this is not this is my body. I’m not masking it with any drugs or pain relief. I know I had, I just had this sense of knowing that. This isn’t normal, I know. And I know there’s something wrong and I will get to the bottom of it. So I feel very fortunate that that happened for me. And. When I saw that final surgeon and he said, “yeah, I think you’ve got endometriosis”, it was just like just this massive sense of relief that someone was listening, that I was probably right, that actually there was something, there definitely was something wrong in my body. And there was a male doctor. That was understanding what was happening in my day. It is incredible. 

Le’Nise: What do you think it took for you to be able to fight for yourself in those moments? You know, you mentioned the moment where you wouldn’t leave the surgery until they referred to what poor preparation did you do for yourself in that moment? 

Trisha: I think you just get to a tipping point where enough’s enough. Like. 

Like. 

All the different pain relief you can take. You just decide that that’s not the solution. I think that’s when I decided I don’t want to keep trying to try all these different drugs. That’s not you know, I work a lot through the coaching to find the root problems of what why different things happen. So, again, it’s back to the root cause that’s what’s going to fix something. All of the prescription drugs, all it does is. Like I said before is mask it. So I just went I just as I I’m going into this meeting and I’m not leaving until I’ve been referred. I’ve got a ten minute slot and you need me out of here as possible. So I’m just going to try it and see what happens. And thankfully it worked, so just stick to your guns and just fight for what you want. 

Le’Nise: I want to switch gears a little bit and talk about how you said that, now you honour your cycle. And you mention how through coincidence or not, on the first day of your period, you are able to shift shift gears a little bit and stay at home or stay close to home. Talk a little bit more about what else you do to across all of your your menstrual cycle to integrate that and how you’re feeling energy wise into your work and the rest of your life. 

Trisha: So I like I said, someone recommended a book to me, which was Code Red by Lisa Lister. And that explained that actually what we’re taught very early on about, you know, we have this period of time where we bleed. I learnt that actually I have all this different magic that happens throughout the whole of the month and in different phases. You know, I learnt about there was a spring, a spring season, summer, autumn, the winter and in each of those, there’s different things happen in my body and different energies that I’m going to get. You know, I’m going to be masculine energy, feminine energy. It’s like a light bulb went off. I was like, we should get this at school. We should understand where we start our periods, what actually happens the whole of the month. So I started to. You got a download to track. So you just start to track on the first day of your bleed, and then you just started to notice what’s happened in my body each day. How am I feeling? How do I feel workwise? What’s going on in my head? I just started to track it. That’s the first thing I did. So I did it for the first month. And then the second month I would sort of look at, say, just pick a day. Day eleven where I might feel a little bit flat. And I’d look back at the chart of the month before and look at day eleven and realise, oh, actually on day eleven and I feel a little bit flat. So I started to realise that there was different energies that I was feeling in those times. So then I started to put the dates of my cycle alongside the diary that I have. So now it might say it’s the, you know, the twenty third today, but it will also show that I’m on day 11 of my cycle. So now when people are asking me if I can do things like I’m moving into perimenopause now, so my ability to plan as well as I did, so for about the last 18 months, I’ve had the same regular cycle. So when somebody asks me to do something, I think, where am I in my cycle? So I know that in autumn and winter I’m a little bit more in my feminine energy. So things might feel a little bit like I don’t feel as sociable, especially when I’m in my autumn. Being able to talk and communicate is a little bit more difficult. I struggle to find the words sometimes and articulate what I’m wanting to say. So I found that spring and summer was the times that I’m more sociable. Great for doing things like this. Speaking to you and delivering workshops, all of those different things, I realised that there was different energy like in all of those different times. There’s a time for planning. There’s a time for getting shit done. There’s a time for accepting invitations to socialise and do all of those fun things. And I started to just experiment with it. Like you can’t always do it. You know somebody, if somebody is running an event, you could say, well, I can’t do it because I’m going to be winter. But. I started to say, yes, I would do certain things, and if somebody asked me for a social thing, I’d think, well, I’m in summer now, so I’m dying to say yes to this because I’m in that energy where I want to be around people and be sociable. But when they want to meet with me, I know that it’s gonna be winter and I’m not going to want to feel so sociable. So it helped me to start to say yes and no to things I thought were right for the energy. And that worked wonderfully for about 18 months. Now I’m moving into a phase where my cycle isn’t as regular so I can have a 25 day cycle, I can I have a 29 day cycle. So the the ability to plan has gone a little bit. But I still use that. I still try and guess as much as I can. And the beauty is I will then go and tweak anything afterwards if then my period comes early. I then look at my diary for the week after and think, is there anything I can move around to make sure that I am using the my energy in this week in the right way? So yeah, it’s just for me. Like I said, I found this out at such a late time in my period journey that I. I wish I had known before about it. Like I said, hindsight’s a wonderful thing. It’s been the most amazing transformation for me. Instead of guessing what’s wrong with me, why can’t I do what I could do last week? Why is my inner critic really loud at the moment? Now I just go, Oh, I get it. It’s my hormones. It’s OK. It will pass. This isn’t me. This is my hormones. And ever since that’s happened, it’s just like this huge sense of relief. 

Le’Nise: It sounds like you’ve learnt to really be tender with yourself. 

Trisha: Massively, massively. I recognise that we we work in a, in a society that has been designed for men, you know, the working day is designed for a man, the 9-5 is based on the man’s body clock, like we are trying to fit into a man’s world. And we we want to be treated equally. But we have to recognise that we we have a difference like what happens in our bodies is different. And there’s magic in that. Like, if we can work to our cycle, we can be much more productive. We can perform better if we work with that energy. But we can not be in this masculine energy all the time to hustle, the pushing, always being switched on, always being a hundred mile an hour. We can do it, but there’s a consequence to it. Now I know that there’s a flow between the masculine energy and the feminine energy. I just try and honour it more and just always when I feel it in a funk or I’m feeling like I just, don’t have ideas today or I can’t find my words, I ask myself, where am I in my cycle? I just ask myself all the time. Yeah. OK, that makes sense. Most of the time is down to my hormones. It’s just where I am in my cycle. 

Le’Nise: It’s amazing how when you start to tune into what’s happening to your body, you learn so much more about yourself and you move away from this idea of dealing with your body and dealing with what’s happening to your body to have a better understanding and maybe not embracing it, but being more understanding of yourself. I just wanted to just talk, for listeners who don’t know some of the terms that Trisha has used. So she’s talked about the summer, winter, autumn and spring. So those are the different phases of the menstrual cycle. And so winter is when you have your period. Spring is when you come out of your period with a follicular phase. Summer is ovulation and then autumn is the luteal phase. So this is the kind of terminology that some people use to to describe the different phases of the menstrual cycle. And it’s a nice analogy for what’s happening across the seasons. 

Trisha: That really helped me Le’Nise, because I could think about, well, what happens in winter. Well, animals hibernate, like nothing grows. It’s a really quiet time for reflection in the shorter days. So for anybody listening, it’s really good to start to track that and think about what happens in nature, because that’s what happens in those light, how cool are women’s bodies like we go through four seasons of nature in one month. I just think it’s the coolest thing ever. 

Le’Nise: I really wish that we had been taught this in schools or that there was much more emphasis on this in the schools because we spend so much time fighting it. You mention feminine energy and masculine energy and we spend so much time in this, especially when you have your own business, hustling and this kind of feeling like you have to work 24/7, never let up when really, you’re, this is not the way that our bodies were designed. We are designed to have rest. We are designed to be able to take our feet off the pedal a little bit and kind of tend to ourselves. And I do love the fact that all of these conversations are starting to become, yeah, maybe not mainstream, but these conversations are starting to happen more openly. 

Trisha: Definitely. And it’s interesting. I love to talk about this subject. You know, I had a career in HR for 22 years in corporate companies that would not want to talk about this subject. And I love, I find this companies now that are interested in talking about these subjects that we haven’t spoken about before. And I hope that this is a shift starting to happen that we need to have these conversations. We need to help women in the workplace. Harness this magic as their monthly cycle. Like, let’s get out of this hustle and male masculine energy all the time, because I do think that drives our health. Like if we asked if our bodies designed to rest at a certain time, but we’re not honouring that, then it’s going to show up it it’s going to manifest in some shape or the other. And I do think it will come out in your health in some way. 

Le’Nise: Absolutely. I want to talk about your work as a coach specialising in imposter syndrome and how perhaps some of the learnings you’ve gained about yourself over the last three years have tied into or fed into the work that you do with clients. 

Trisha: Yeah, so I’m obsessed with talking to women about their cycles. So if if I have a client that has been, you know, they’ve made real progress, but then all of a sudden they’ve got a day where they’re feeling like really doubtful. The first thing I asked them before anything, what day what day of your cycle are you on? I do it with my friends as well. But I’m always asking people, where are you in your cycle? So I’ve I’ve been able to to carry on whilst it’s about, you know, my specialist subject is imposter syndrome. That’s why you’re doubting your abilities. Actually, there’s times in your cycle and where your hormones affect that. So there’s there’s two times in your monthly cycle where it will be louder than it normally is. And if you can start to understand that actually this is just because of your hormones. So I’m constantly asking my clients. I encourage them to track their cycle. And I actually don’t believe everything that you think, like this moment in time, don’t be making decisions because this isn’t the perfect time to be making decisions, because you’re being more led by your hormones right now. Maybe we can park that and come back to it. So I think it’s just for me, it’s given me a way to be more in tune with my body. And I encourage my clients just to do exactly the same. To start to understand what is happening with you personally. And yeah. A lot of the times it’s where they say. I just don’t feel it this week. And it’s not it’s the week of their cycle. You know, they’re having their bleed. And I’m like, so how are you going to build some rest in. Your body doesn’t want to be going a hundred mile an hour right now? So, yeah, I definitely talk about it with all of my clients, but also the people that I just speak to on a day to day basis. 

Le’Nise: So you said that there are two points in the menstrual cycle where that inner critic, that self-doubt that it would be louder. Is it right before the period? And in the first couple of days of the bleeding?

Trisha: So it’s when you go into your spring. So if you think about spring, everything starting to come alive. And that’s when it starts to become like you’re wanting to move into getting things done and making plans and bringing things to life. That’s when it pops up. So I always say to people, if it pops up in spring, say, go away, you can come back in autumn. Now’s not the time. I haven’t got time for you right now. So come back in autumn and then we’ll have a chat in autumn. So, you know, kind of push it, to, I’ll have an appointment with you to come back in two weeks. We’ll have a chat then. Autumn is when it is at its loudest. You know, you get into your comparison. Should I be running my business? Should I go and get a job? Should I quit? Is my work as good as everybody else’s? That really good idea that I’ve been doing. Maybe it’s not so good. You’ve just got to watch. You’ve really got to be mindful and look at it. What’s going on with my thoughts this week? Because that’s all they all, we don’t have to believe everything. But that’s normally what happens. I know that if I start to doubt anything and I think, OK, well, that’s what’s happening now. But because my hormones are driving this, let’s look at this so I schedule some time for the week after when it’s out of autumn into winter and I think, or spring. Let’s have a look at this decision then. Is it still the case of most of the time it’s not.

Le’Nise: It’s interesting, what you said about that inner critic popping up in after you finish your period as you go into spring. Yeah, because you you start to your oestrogen starts to rise again, your testosterone starts to rise. And perhaps, I never really had looked at it this way before, but perhaps, you know, that that growing of kind of feeling, lots of ideas, starting to feel more creative. Back being back in your body, that can be a bit too much. Yeah. Your brain for some people, the brain wants to put the brakes on that a little bit like, whoa, whoa, whoa, let’s calm down here. 

Trisha: Yeah. Because our brain is basically, it needs to keep us safe. So if we’re thinking of pulling ourselves out in the world more or being more visible at all of the things which is wonderful in this spring energy, our brain goes, well, this is a bit risky. This doesn’t feel safe. And it wants to put you back in to that comfort zone. And even if you’re miserable in it, stay where you’re safe. So it is it’s it’s it’s very interesting and it’s good that you put it like that. But it’s linked to certain hormones increasing, which is growing. So we want to grow naturally with that. And our brain goes, no. Let’s keep you safe. Let’s get the inner critic putting you down and hopefully you’ll listen to it and keep yourself safe. But you’ve just got to, like I said, just not believe everything you think or tell your brain. Like I said to my brain, sometimes it’s OK. I am safe. If I do these things, I will still be safe. Thank you for letting me know, but I’m OK. I’ve got it. So I chat to my brain and let it know because it, it, it deals like sometimes you can get frustrated with my inner chatter. So horrible. But it is designed to keep you safe. It’s trying and it’s got the best intentions. It’s just not helping you. So you just got to try and do it sometimes like you chat to a friend. 

Le’Nise: Talk a bit about imposter syndrome and why you decided to specialise in this area. 

Trisha: So imposter syndrome, I experienced it for a huge chunk of my life. Now when I look back probably from about the age of 10, I can link experiences of how I experienced it right throughout my corporate career. I had a really successful corporate career. And now I look back and think I missed it all because I was constantly waiting for someone to tap me on the shoulder and go, no you don’t belong here. You shouldn’t be here. You’re not as good as we thought you might have been. Your work isn’t up to scratch. We’re going to have to replace you. Like the whole of that time, I had that niggling in the back of my brain. So when I went to trade as a coach and I kept saying, you need a niche, you need you need to have something that you specialise in. I was looking around thinking I don’t know what it should be. And only through working with a coach, she would say, well, talk to me about what you experienced in the workplace. And I was like, yeah, well, I had all of this going on. And she said, that sounds like imposter syndrome. And I Googled it and I was like, yeah, that’s how I used to feel, wow. And thankfully I’d done lots of personal development and work on myself. So actually, I helped to move myself out of it. Like, I still experience it now, like I’m a recovering imposter. It still comes back every time. Like you said, every time I try and grow and elevate, it’s waited. Whoa, let’s keep you safe. And again, I’d I’d spent 22 years working in the corporate world where we didn’t talk about these things. There was no one I could like. I worked in HR. So there was no one I could go and speak to. But I knew people weren’t coming to me and saying, I’m really struggling with my own self-worth or my stable, my confidence. We were always training people in time management and customer service skills. We weren’t talking about the real stuff that sits underneath us as a human being that helps us thrive more in the workplace. And I was just thinking I experienced this. And I still experience it. You know, the intensity is mild now compared to what it used to be. So I will always be able to resonate with my clients. I’ll understand the journey they’re on. I’ll understand the workplace and how hard it is sometimes to battle with imposter syndrome, while you’ve got all the external factors going on, so I can resonate with that. I will always be working on it myself. And like I said, I’d just like to sort of push the boundaries of the workplace. Like, if we can start to talk about this, then maybe we can start to tackle it from inside the companies as well. A lot of people come to me one on one, but they’re paying for that themselves. But what if companies started to invest in, starting to tackle these things, it’s happening in the workplace. They can avoid it. But if you start to tackle this and let employees know that actually lots of us experience it and we can talk about it and we can look at tools and techniques that we can put in place and reviewing their systems and their processes, because a lot of companies, the way they operate. Actually, it’s a breeding ground. So if you can look at all your policies and your procedures and your ways of working in. You can also change things to help people thrive and overcome their imposter syndrome. Yes. It’s just to me, it’s this big mission of not just helping individuals, but how can we change this whole subject? How can we stop this taboo thing that we all so fearful of letting everyone know that we doubt our abilities? What if we just had these really open conversations? And it’s so wonderful if I do a workshop, you know, the relief that people feel that they’re in a room full of 40 people and then they realise that actually most people in there have those same sort of thoughts going around in their head. It’s such they realise they’re not alone anymore. So for me, it’s just this whole passion of a mission of just just changing the way that people think in their heads, but also that being able to transfer into businesses as well. 

Le’Nise: I interviewed someone earlier in the year who said that imposter, her imposter syndrome. It actually motivated her and it helped her not to get comfortable with where she was in her business and her career. What would you say to that? What would you say to people who say that well actually, imposter syndrome isn’t necessarily a bad thing? 

Trisha: That’s OK as long as it’s from a healthy point of view. So what I find sometimes is people say it helps me to push myself. It helps me to overprepare for things, make sure that everything is right. But you can fall into the trap then of perfectionism and overworking and having, you know, flaky boundaries. Like you’ve got to look at what is driving me. If it’s a good, healthy driver. But what I find sometimes is that you overwork. And what is the reason you’re overworking? You’re over working to prove that you’re good enough. So as long as you get to, is it a healthy thing, that imposter syndrome is giving me that absolutely. Hold onto it. I’m not saying get rid of it. I’m saying minimise it. But if you find it’s holding you back in any way and or it’s making you feel in a negative way or your negative chatter in your head or your behaviours are unhealthy, then tackle it. But if you’ve got a healthy relationship with it, I’m not saying let go of it. But it’s still definitely back to the, is it healthy for me to be constantly over checking and overpreparing things? You’ve got to ask yourself these sort of questions. I can’t answer for an individual. For me, I don’t think that personally healthy, because if I do that, then I’m not doing other things or it’s encroaching into my time where I should be resting, having fun or spending time with loved ones. I think you’ve just got to do a bit of an analysis on. What’s good about it? 

Le’Nise: Yeah. What you’re saying is so interesting, because I definitely say that I have some imposter syndrome, like less so now because I really, really feel like the work that I’m doing. There’s a place for it and it’s important. But definitely when I was working in advertising, I was running a massive account. I was travelling all over the world. But I still had this feeling of this gnawing feeling of, well, you know why, I shouldn’t be here? Why, oh, why am I? Why am I this person? But now I know that, you know, when I go up and I do, I give workshops or do presentations, I know that I’m supposed to be there. They’ve been, I’ve been asked there for a reason. And I know this is the work for me. What would you say to someone who. You’ve given so many amazing tips to people who are feeling imposter syndrome and it’s holding them back. What would you say or your number one tool or piece of advice is for someone who feels crippled by their imposter syndrome. 

Trisha: I think one of the first things I always found, journaling worked really well for me. That’s where I started my journey. And interestingly, I just started writing about what I was grateful for each day. It wasn’t actually even about myself. But because I started to look for things that were positive in the day, started to help my brain rewire and look for positives, and then I just started to journal about, instead of asking the questions, what’s wrong with me? Which is it? You know, we don’t know, but that’s a terrible question because our brain is designed to be, to look for the negative. So if you say what’s wrong with me, your brain is like a loyal servant, it goes, oh, I’ll tell you what’s wrong with you. I’ll give you hundreds of things to tell you. You’ve just got to start asking better questions. So I started to think, you know, I’m a coach, so that that’s what my job is to ask questions. So I thought, what better questions can I ask myself? So I started to. Write down these questions and start to write down the answer, and I find when you get out of your head, like when you just allow your thoughts to go round around in your head, it’s like you give them momentum. It’s like you give them power. And they the negative ones just they sort of like linked together. It’s like a big necklace you’re wearing. But I find when you put pen to paper. It’s like you’re letting that little, I call it like your inner mentor, you’ve got this inner voice inside of you that really knows what you’re good at. Who really believes in you. When you start, I found when I started to write things down, I was quite surprised about, oh, I, I can I write. I have got these skills and yes, I have got these strengths and I started to chip away at the belief that I had for me really all all imposter syndrome is it is a belief that you don’t belong. A belief that you’re not good enough, a belief that you’re not smart enough, a belief that you’re not cool enough to be in this space. A belief that you don’t know enough. It’s all driven by what you believe and your thoughts, your feelings and how you behave is driven by that belief. So you’ve you’ve got to tackle your beliefs. You’ve got to start to question what I believe in. Is this still useful for me right now? Like you’ve said, you’ve got to sit down and go, what are all these beliefs that I’ve got about myself? And I do that with my clients. You know, we we go on a treasure hunt, finding all these beliefs that are driving their thoughts, their feelings and their behaviours. And then you’ve got to start to break those down. And if you start to change what you believe about yourself, like you said, if you start to change how you show up in the world. So even if the first thing you do is just start to ask yourself better questions and write down the answers and start to find evidence to prove that your imposter actually, doesn’t know everything, might think it does, but it doesn’t know everything. And I bet you will have every single person I have never met anybody who doesn’t have skills, knowledge and experience that actually proves that the imposter isn’t right. But I think sometimes we’ve got to also recognise that actually we’re in an environment that can, like I said, can make us feel like an imposter. I was the first person in my family to go to college and work in the corporate world. So I was the first professional in my family, so I didn’t have a role model. So this is how careers go. I was the first one in my family. I worked in a real male dominated, white, male dominated environment. So lots of spaces you you go into was the first person and you don’t always feel like you belong. So it’s our own internal thing. We have to teach ourselves that no matter what the external is telling us, that we have to tell ourselves that we do belong in these spaces. 

Le’Nise: We do belong in these spaces. I think that’s really powerful as a kind of affirmation. I belong. We belong. I love that. If listeners take one thing away from all of the wonderful things that you’ve said on the show today, what would you want that to be? 

Trisha: I would say learn about your cycles like it’s been one of the most precious things that I have discovered in my 40s. So if you’re in your 20s or your 30s, even if you’re in your 40s, it’s good to know because you are surrounded by women in your life. You can help the next generation. We can stop this from happening to women of my age. But let’s stop it. Let’s make sure that we’re teaching the next generations about the magic of being a woman, about power and the energy that we flow in that cycle. If we know that that can change the way that we are. Let’s stop trying to be masculine energy all the time. Let’s. I hate the word hustle. Let’s just not let’s not talk about trying to be a man. Let’s focus on being women, because we are special. We have got something special to offer the world. Let’s use those hormones and all of that energy to drive that. 

Le’Nise: Brilliant. Where can listeners find out more about you? If they want to tackle their imposter syndrome, where can they find you to do that? 

Trisha: Yes, sir. On my Web site, it’s www.trishabarker.com. They can look there. I spend time on Instagram where I’m doing IGTV, et cetera, where I share more stuff around imposter syndrome. Lots more tips and tricks and techniques. That is @theimpostersolution over on Instagram. 

Le’Nise: Brilliant. Thank you so much for coming on the show. I really enjoyed our conversation. 

Trisha: Thank you for doing this work for someone to be getting people like me talking about this. Your your you’re making things happen, you’re changing what it will be like for the next generations. 

Le’Nise: Oh thank you so much. 

Managing endometriosis pain

Did you know that a significant amount of endometriosis pain is driven by inflammation? And this inflammation is typically at its worst in the week you have your period. If you have endo, you won’t be surprised by this at all, right?

 

What do I mean by inflammation? 

 

Inflammation is the body’s attempt at protecting itself by removing something it perceives to be harmful and allowing healing to begin. It is part of the body’s immune response and is initially beneficial when it happens over a short period of time.

 

However, long-term (chronic) inflammation can be detrimental to the body.  Chronic inflammation can occur from an autoimmune response, where the body’s immune system mistakes healthy tissue for something harmful and attacks it.

 

For women with endometriosis, food and supplements can be a very powerful way to reduce inflammation, which can then lead to a reduction in pain levels too.

 

This isn’t a quick fix, mind, but can work really well in the long term.

 

Research shows that turmeric can be an especially powerful way of reducing endometrial pain and inflammation through its very powerful compound, curcumin. Magnesium, fish oils and castor oil packs can help too.

 

Okay, I hear what you’re saying – I need help now!

 

In times when endometriosis pain is at its worst, painkillers can be extremely helpful, especially in instances of severe pain.  It’s worth bearing in mind that research shows that long term use of painkillers can have negative effects on liver function and on the lining of the stomach.

 

With my clients with endometriosis, we take a long and short term approach, looking at diet and supplements to reduce inflammation and pain in the long term, as well as practical ways to reduce pain in the short term.

 

What can I eat to help reduce endometriosis inflammation and pain? 

 

Diet can make a huge difference in managing the inflammation that happens with endometriosis. I always recommend adding in foods that can help you reduce inflammation over the long term.

 

I’ve already talked about turmeric and its wondrous compound, curcumin.

 

Eating lots of green leafy and cruciferous vegetables is helpful too, as these foods help your body remove the excess estrogen that is a hallmark of endometriosis.

 

They also help you empty your bowels regularly, which is an important way for your body to remove excess hormones. If you’re constipated (i.e not emptying your bowels at the very minimum, once a day), there is an increased risk of the excess estrogen being recycled back into the body, which for endometriosis sufferers, can exacerbate your symptoms and increase inflammation and pain. Having a healthy bowel movement in the morning, before breakfast, is a great way to support your body and reduce endometriosis and other symptoms of excess estrogen, including PMS, period pain and mood swings.

 

The research also shows that a higher intake of fruit, especially citrus fruit, can reduce the risk of  endometriosis further developing.

 

If you have endometriosis, have you used food as a way of managing your symptoms?

 

Do you want help improving endometriosis pain? My short e-book, ‘Six Ways To Fix Your Period Pain‘ will give you practical tips to change your period for the better.

Let’s talk about endometriosis!

What is endometriosis?

 

Endometriosis is one of the most common chronic hormonal disorders affecting women in reproductive age, affecting up to 10% of women.

 

Endometriosis has been described as an autoimmune condition where endometrial tissue typically grows on the outside of the uterus instead of on the inside. The tissue is most commonly found around the organs in the pelvis, but can grow anywhere on the body, turning into growths and lesions in the intestines, bladder, rectum, even as far up as the nose!

 

Endometrial tissue typically responds to the changes in our hormones across each phase of our cycle, as it would if it was in our uterus. Endometriosis sufferers usually have excess estrogen in relation to progesterone, which drives the ongoing hormonal imbalance.

 

The primary symptoms are pelvic pain and infertility, as well as painful periods, painful sex and painful urination.

 

There are four stages of severity to endometriosis; ranging from stage one: minimal endometriosis to stage four: severe endometriosis. The level of severity depends on the number, size and location of adhesions and endometrial tissue.

 

Diagnosis is usually done through a surgical laparoscopy.

 

Getting a diagnosis

 

Did you know that it can take up to 7.5 years and sometimes even 10 years to get a full endometriosis diagnosis?

 

It’s so important for women to feel confident about advocating for themselves in medical situations and empowered to ask the right questions so that we get the answers and diagnosis we deserve.

 

Pain is not normal and is a sign that something is wrong. If you’re experiencing pain, never let someone tell you that it’s all in your head! You know your body best!

 

Endometriosis pain can be severe and it can be systemic, with inflamed endometrial tissue appearing outside of the uterus.

 

If a doctor tries to minimise your pain, then get a second, third or fourth opinion. Do what it takes to get a medical professional that will listen to you, take what you say seriously and help you find the answers you need and deserve.

 

Do your research. Knowledge is power and will help you advocate for better health outcomes.

 

Keep track of how you feel and your pain levels, so you’re armed with evidence that will help you fight your corner.

 

Most of all, be relentless in your pursuit of good health.

 

Do you want help improving endometriosis pain? My short e-book, ‘Six Ways To Fix Your Period Pain‘ will give you practical tips to change your period for the better.

 

Photo by Kinga Cichewicz on Unsplash