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.