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
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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.
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.