Coffee Stories: Living With Endometriosis
This week I’m honoured to share a very raw and honest Coffee Story chat with the woman behind the @Endosister2021 instagram. Below she speaks candidly and in-depth about her own journey from that first period - and the pain that came along with it - to her eventual Endometriosis diagnosis (and the numerous failed treatments and mis-diagnoses on the way), surgery and beyond.
We chat about the lack of education around reproductive health, the problems with receiving adequate support or accurate care (and a correct diagnosis), the normalisation of women’s pain (in particular when related to the reproductive systems) and the reality of living with a chronic condition like Endometriosis.
March also happens to be Endometriosis awareness month, and if you are someone who has not heard of this chronic illness before I wanted to share some basic facts around this chronic illness (all facts and figures from EndometriosisUK):
Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions). The condition affects approximately 1 in 10 women (and those assigned female at birth) from puberty to menopause, although the impact may be felt for life.
1 in 10 women of reproductive age in the UK suffer from endometriosis.
10% of women world wide have endometriosis - that’s 176 million worldwide.
The prevalence of endometriosis in women with infertility be as high as to 30–50%.
Endometriosis is the second most common gynaecological condition in the UK.
Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.
On average it takes 7.5 years from onset of symptoms to get a diagnosis.
Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
The cause of endometriosis is unknown and there is no definite cure
So, without further ado, please enjoy Endosister2021 (and yes, she does explain her decision to remain anonymous below).
Could you summarise your journey when it comes to women's health in general and endometriosis in particular?
Yes, of course. So, I guess we start 11 and a half years ago. I got my periods at a very early age and I didn't really know what was going on. Obviously... Well, I say, obviously, I know not everybody has that luxury, but I went to my mum.
I'm very close to my mum, and I spoke to her about what was happening because it came with an excruciating tummy ache, or rather what I thought was a tummy ache at the time.
And she, obviously, she was quite young… My mom, she took me to the doctor, because my mum had been very fortunate... Her whole life she's never had any problems with her periods. So we went to the doctor and... Basically their first port of call was just to say I was still so young - I think I was probably about 12 - and that basically, uh, it would get better.
So… I was still growing up and it was quite young for it to happen and to come back if the pain hadn’t subsisted in about six months to a year.
So that was kinda my first brush with a doctor around periods.
Then it wasn't as bad and they were very kind of… I never had a period every month to start and it wasn't till I got to about 14 that the periods got SO bad.
I would be missing weeks of school every month. So, I'd miss a week here and there. And that's when my mum took me back to the doctor and they basically said, yeah, okay. You need to go on the pill. This is the only treatment for this. Some women are just very unfortunate and they have severe periods each month. And you might just be one of those unfortunate women.
And at the time, being 14 and my mum not having bad periods, I just thought, Oh yeah, maybe it's bad luck. And maybe, maybe I'll grow out of that. Like they told me at my first appointment, I didn't really think much more of it. And just kind of went on.
But as the months and years went by it just got so bad. You know, I was having to wear pads where I felt they were the size of nappies! And because I couldn't use tampons because I would just soak through them, and the pain medication was just not doing anything... And it just got so bad to the point that I was throwing up from the pain and then I began passing out from the pain, um, quite often.
And sometimes my mom was there to catch me. Sometimes she wasn't. Sometimes I was alone in the house with my dad. And obviously trying to explain that pain to my dad was really hard. You know, he was obviously hurting, watching his daughter go through this and he couldn't understand why doctors weren't doing more!
Fast forward to about 16 when I get my first misdiagnosis, where they're basically telling me they think it might just be a massive hormone imbalance and they think I'm producing too much oestrogen, and that's why everything's out of whack.
And, so, they wanted to put me on pills to kind of help balance my hormones out more. But still keep taking the pill that I was on at the time. I can't recall which one it was. And then I did that for about three to six months.
Nothing changed.
The pain was just as bad. The fainting spells, the vomiting, everything was just horrific, so I went back here. And then they basically told me that they thought it was PCOS. So, this was the second diagnosis I've been given and I'm probably yeah, around 16, 17 years old at this point.
They explained to me a little bit about what PCOS is and I kind of go, all right. Okay. Great. And then… You know, they'd just tell me “what we're going to do is we're going to trial you on a couple of different pills”. And then I believe I was on a pill that I started taking for two months and then it got recalled back because there was something wrong with it.
So, I had to immediately stop that pill and immediately then was put on to MicroGynon 30. And the reason I remember the name of that one is because that would be the one I was on for the longest. Anyway.
So I tried that and it helped to start. I think my body was kind of going through so much that it just kind of said, you know what, no, we'll give you a bit of a break for a few months and, you know, while we're getting used to this pill and then my body, I think... kind of got used to it.
And then the pain started up again, and the headaches before and the lower back pain, and it was just hindering my way of life. So I went back to the doctors and the doctors asked me to, you know, to keep a period diary and note down all of my feelings and everything that happened around the time when my period would start, just to keep track of it all.
And in the meantime, they refered me for one of my first scans.
So I went and they basically, at the time, didn't want to give me an internal scan. So I just had an ultrasound. And they were like, yeah, no, we can't see anything. We can't see any cysts. So we think you're fine. And then about, I think it was like six to twelve weeks later that I had a period that lasted two weeks and I had to go back.
Then I had another scan. I had a, I had a doctor's appointment where she basically did an internal examination, which funnily enough was my first one. And I think by this point I was probably 18, 19. So it had taken that long and she said she could feel a mass.
So I then got sent to the emergency department and they basically did yet another scan, and said, yeah, they could see a mass on the scan. And they were insistent that it was PCOS. And this went on for a few years and they told me to follow a PCOS specific diet, and they put me on to regular medications on top of the pill.
So, you know, every month I'd be taking the pill, I'd be taking tranexamic acid. I'd be taking mefenamic acid as well as codeine, and other painkillers. And just hoping that that was enough. And for a while it helped. But I just wasn't really feeling myself and, you know, it was starting to affect everything else in my life.
My mood, my sex drive. You know, my weight, everything. And at the time the doctors just kept telling me that there would be side effects from all the medication and the pills. And without coming off of everything I wouldn't know how I truly felt, but if I came off everything I was going to have to deal with the pain.
Then jumping forward… I was in my early twenties and I got told, you know, that… I basically went back to the doctor because it was just not right. And I wasn't happy and I kept getting brushed off, and then I got told that they think they misdiagnosed me completely. I clearly had IBS.
So it was IBS. And so what I needed to do is start taking IBS medication along with all my other medications. So at this point I was on so much medication.
And so for, yeah, for four months I was on four medications. This IBS medication, the hormonal medication, the pill, all of this stuff. This is the pain medication. And it just got to the stage where I, I felt like I was, you know, just popping pills 24/7. And it was no way to live.
So I basically ended up going back to my GP and I demanded to go to see another doctor because by this point as well… I think I should stress the one thing that had really upset me in this whole journey is I had not seen a consistent doctor. I don't know if this is something a lot of other women have experienced, but I never felt that I had that support or consistency from one doctor who'd been with me through my journey.
So I had been seeing all these different doctors at the same practice, but I had to consistently tell the same story from the beginning, even though I knew it was all in my file. And you know, they just kind of said, okay, well, we'll refer you up to one of the, you know, the more senior doctors within the practice.
And he basically said to me, no, I don't think it's IBS. I think, I think you've definitely got PCOS and then I was back to that and I got told, you know, all the side effects and he really went into detail… And I think by that point, I was so desperate for some sort of help that I kind of took what he'd said at face value for a few months to a year.
And I kind of just thought, yeah, okay. Clearly that's what it is. And I just have to deal with it and I'll go home and I'll do more research about PCOS. And then I got talking to a few friends around me who had also been diagnosed with PCOS and they were telling me about their treatments or the things that doctors had said to them or, or just the symptoms and the medications they were on.
And I thought. Yeah, it sounds similar, but it also sounds wildly different. And the problem I have looking back at it now, and still thinking about this today, is I think doctors kind of paint a lot of women's healthcare issues, especially around reproduction and reproductive organs, with the same paintbrush.
I think they think PCOS symptoms must be the same as Endometriosis symptoms. And you know what, some of them are but some of them are not. And then I had been for more internal scans, more external, more ultrasounds… Sorry. I keep, I keep calling them external scans. And then I unfortunately went through the process of having a miscarriage, which I didn't know I was, I didn't know what it was…
I didn't want to… I only spoke to one friend about it. And yeah, and when it was confirmed, that's what it was.
And it's suddenly like that was when it got taken more seriously, which... Having to deal with the fact that I've just gone through this was hard enough, but then having to deal with the fact that it’s almost what kick-started the doctors, interest and intrigue into me and into my hormonal history was just more upsetting because I thought, does it take a woman to go through something like this for you to take this thing seriously? Because I then got referred to the gynaecological department at Chelsea & Westminster, after being told that it was one of the best in London. And I was very fortunate to get an appointment there.
I know that because not a lot of people do, but it had by this point taken eleven and a half years. And when I went, I saw this incredible doctor who I saw every time I was there. And she during my second appointment said to me, “Ok, right. We need to get you in for an internal scan and ultrasound asap. And then we're going to review those results with a surgeon.”
And so, on my third appointment after I'd had these scans done, I was meeting with her and a surgeon who basically said to me that yeah, your symptoms sound like Endometriosis.
He said you know, some women have endometriosis, and they have what they would call stage one, where they have almost no pain at all and you can go in and, uh, you know, they're covered in endometriosis and they, and they didn't know.
And they they'll be exhibiting the pain in another way. Because you can get endometriosis on your bowel, you can get it, you can get it anywhere!
He thought that one doctor had diagnosed me with IBS you know, probably at the time because I had some endo on my bowel and, and he just thought that's what it was. And then he said to me, you could be like yourself and you could have you know, have all these horrific symptoms. And we could get in there and find, you know, one speck of Endo and we remove it and it's fine.
But like he said to me, the problem is surgery at the moment is the only kind of… He didn't even want to say cure because it's not a cure. He then explained to me that it is a chronic illness. It grows back and it can grow back in three months, six months, a year, six years, 10 years.
He's had, you know, a woman that he's had to operate on four times. She's got what they call stage four and now, you know, it's spread all over her ovaries on her womb, on, on her bowels, everywhere… And. There's nothing more they can do. So, her treatment is that she wants to just have, you know, a full hysterectomy. And to have made that decision in her early thirties, or to have four surgeries and then have to have this one now and have to come to that decision is really hard.
And he shared that with me because, you know, he was brilliant and very blunt and very to the point. He said to me, look, I know it's hard that this is even something that I must say, which struck me quite a lot because, you know, he was a male surgeon, and he was saying ”as a male doctor, you know, I'm not a woman. I don't know what pain you're experiencing. I've just got the 25 years of being an endo surgeon, being in the gynaecological field to, to kind of just imagine what the pain must be like, but I can't imagine this is going to be easy for you today.
He said he was going to recommend and put a note in my folder that, after you have a kid, if you want one, if you want to try – and that journey will be hard - but I would recommend a full hysterectomy for you after your first child.
And then that brought us through, you know, to… Months of appointments pre-ops and then January, 2020, uh, the start of, uh, what was a very interesting year, started off for me with, yeah, my first endometriosis removal surgery. And I basically went in and I had it and they managed to remove it all.
I had it on both ovaries and they even found this mass or this cyst or this lump, they thought was. You know, because they removed it and they biopsied it. And it was actually just a huge sack of endo that built up for so long that they just, it didn't even look like endo anymore.
And it was so funny cause it was on the left ovary and every appointment I'd said, I get this intense, sharp pain on the left and that's where they felt the mess. And. So it was, it was insane. So if you look at it by numbers to summarize it for, you know, for 11 and a half years, I was dealing with this and I still am because it is a chronic illness.
You know, I had nine scans, that's internal and ultrasounds. I had five misdiagnoses. Three different hormonal pills. Uh, two regular medications each month on top of the hormonal pill I was on. And five months ago I made the conscious decision to stop the pill after 11 and a half years, because I needed to give my body a break and I wanted to see the side effects of this surgery.
And so I've been dealing with that, but you know, luckily, so far I've only had to have the one operation. But who knows, I have to check in with my doctor regularly for it. And, yeah, so far that's been my experience.
And you say so far, you've only had the one surgery, but how have you felt the pain afterwards? Did you have a reprieve? Has the pain come back?
So for the first three months I, you know, I found it really hard to notice a difference, and... I just was kind of still, I think I was more in my head. Thinking that was going to be a fix, that I wouldn't have to deal with this. I was exhausted.
You know, I said to someone the other day, I, I can't remember the last time physically I didn't feel like I was in pain or have something wrong or just physically felt good about myself and my body and, and just the way my body looks after itself and treats itself.
And then I kind of, yeah, after the three months of kind of being in a turmoil with myself and mentally arguing with myself, I felt that it was okay and I didn't get that sharp pain on the left anymore.
That was very noticeable. And my cramps were bad, but they still, they weren't as bad. And that took me a while to get used to because I'd, I'd, you know, be there waiting for my period and then I'd go, Oh my God. Okay. My period's coming. It's going to be really light or it's going to be, you know, no cramps and the cramps were still there, but they definitely weren't as bad.
And so I was just happy for that reprieve even for a few months. But you get to the end of 2020. So January to December, I'd kind of like said turmoil. And then I started to notice a difference, and then the pain on the left, it starts again. And I've noted this, you know, I've reported this to a doctor, but unfortunately we're in the midst of a global pandemic.
And unfortunately, the way it's been explained to me is that I'd have to go through the whole process again and start back at the beginning with internal scans. And, the funny thing is, so I came off the pill. I came off the pill five months ago now.
And I don't think without coming off the pill I would have felt that pain as sharply. I don't feel that I would have started to understand my body and my, my symptoms of endo, because the pill is there to try and mask it. And I feel like it's this band-aid you get given and you're supposed to put it on and then you go, yep.
There you go. You can live with the problem now.
And I remember so clearly in December speaking to a doctor and, and mentioning to her that I'd come off, I'd made the decision to come off the pill. Purely, for reasons of wanting to give my body a break from all these, these, you know, chemical hormones being pumped into me to, to understand my condition a bit better for myself, but to also start thinking about having children, because I had been told by this endo surgeon that I've been on the pill for so long, that by the time I want to have kids, it's probably going to take you, you know, six months to a year for the pills to come out of my system.
So start now because, you know, I, I do want to think about having kids soon. So if you start that process, now, it should make it slightly easier for you was, was the word he used. And so it, it sucks because I know that I can feel this pain again on my left ovary and it's heart-breaking.
And I keep telling the doctor about it and I'm back at square one, you know, I've had the surgery, they know it can recur, you know, but we are in the middle of a global pandemic. So it's not the highest priority right now. And also to start again and keep a diary and just take pain relief when I need it and just keep an eye on it basically and keep pestering the doctor.
Thank you so much for sharing that, that is such a journey and it is so heart-breaking that it normally takes that long, and then even once you got through all the hurdles, and especially now, like you say, in a pandemic, there are all these new ones from having to do it all over again.
And I imagine from a psychological perspective that can be incredibly traumatic. I've spoken to a couple of other women as well before who have had their surgeries postponed and treatment postponed. And it's just heart-breaking that isn't taken seriously enough.
You mentioned your doctor speaking very candidly about recommending a full hysterectomy. And I was curious to know the sort of mental impact of that. I have no idea what that would feel like, but I could imagine from a female perspective there could be a section of me personally feeling grief around it.
And then another section of me almost feeling like... Okay. So there is a light at the end of the tunnel. If I have a baby sooner, is there an option to end this pain. Do you think there's like that psychological side to it as well?
Oh, yeah, a hundred percent. It is for me personally, because again, obviously, it's such a individual thing and I can't imagine how I would feel...
You would, you would feel probably completely different. And the next woman! And that is whatever reaction you have, it is completely normal, but for me personally, I'm on this journey…
I kind of thought… Okay. That was really blunt and I can't believe that you've (the surgeon) just recommended that, but at the same time, like you've, you've just put it, it was like, “Oh my God. So hold on. That IS a way to fix this? So you're telling me if I have a kid, you'll just take everything out?” Yeah. I'll have to deal with the, you know, the early menopause and all those side effects of basically having a hysterectomy and everything.
They told me what went with it, which to be honest at the time I'd kind of tuned out because in my, uh, in my head, I was already on this mental journey of “cool, have a kid pop it out, have this hysterectomy, and then I just won't have to deal with this.” But. You know, you go, when you think about it and you go, hold on, it stopped being as simple as that.
It's a really big decision. And also, you know, yeah. I know down deep in my heart now. I've, you know, I don't have a kid yet. But I know that I'm, I'd be quite happy with one, but then what happens if I have a kid and then I go, Oh, well, no, I don't want one. I want more than one, which, you know, okay, that's fine.
But what if I make that decision? I've made that decision too late, you know? And it's, it's one of those things, it's making sure that you are prepared at any moment. And I imagine, I can only speak from what I've been told by friends who've had gone through childbirth, but you have to be prepared for every scenario.
And it's funny because I would never have thought something like endo or endometriosis was the same, that you have to be prepared… You know, and it was the kind of conversation you have to have.
So, before my surgery, having that chat to say, you know, would you be happy if in a worst case scenario we have to remove an ovary, would you be happy if worst-case scenario, we have to remove X, Y, Z, the list goes on and having to make all those decisions…
Then sign these boxes…
And, you know, I can't imagine how that feels for anyone else, but for me it was like, Oh God, I'm suddenly thinking of all the things I want and all the things I don't have and all the things I could have, but then also about myself and being quite selfish in saying, okay, Can I picture my life without children.
And that already is the hardest thing for me personally, to have had to do, because I've always wanted to be a mum. You know, I've been in a long-term relationship now for almost seven years, and I know he's the one I wanted to have kids with, but having to have that conversation with him as well, you know, would it be the end of the world if we can't do it naturally?
So it is, it's like you've said that there's that light at the end of the tunnel, but that kind of confusion and that despair and that also that, that anger, that why hasn't there been something, uh, why hasn't there been a treatment or cure developed for this yet? I think that's an incredibly interesting point.
Absolutely, it is a huge societal and funding issue too around women’s health in general.
There is also a psychology – both within general society and, I’ve found personally, the medical community – of almost an expectation or generalisation that women should just put up with a certain amount of pain, especially when it comes to reproductive and period related pain. That it’s just a normal part of womanhood, however severe… When really that is NOT the case, and there are – and should be more – options to at the very least support women in those circumstances.
I'd be curious to know a little more about your take on that expectation that women should just put up with pain, and kind of dismissing symptoms a lot as “Oh, but this is just your period.”
Yeah, this whole idea that you're meant to live with it. It's interesting you say that. Because my, unfortunately my grandmother, who I referred to as my Nana, passed a few years ago now and she came from a generation... She never really spoke about periods otherwise.
She was French. So, she was very open with me and we spoke about it and she knew what I was going through. And she would always kind of say to me, Oh, you know, I'm really sorry you're going through this. It's not fun, but she never kind of went into detail about her own journey, and it wasn't until a few months after… She unfortunately passed in November and my surgery was in the January and it wasn't until I was recovering. And luckily my mum took care of me cause unfortunately my partner had to work and my mum got thinking and she said to me, it's really interesting because your nana actually had really, really, severe periods growing up.
And she wondered if she actually had Endometriosis. And it was just never kind of, you know, they didn't know what it was back then, or she just wasn't taken seriously. She (mum) said, when she was really young and my mum would see her being in bed, you know, holding her stomach with a hot water bottle and being like, I just don't understand, you know, what is going on?
And she (nana) just said, Oh, you know, it's nothing, it's, you know, it's just really bad.
And then basically having a hysterectomy really early. My mum can't remember the details, but basically being allowed to have a hysterectomy super early. And my dad's mom was the same, my paternal grandmother, she, you know, she had my dad and they basically just gave her a hysterectomy straight away.
And then, and it seems to me that they either thought it was a psychological issue and they thought, you know, okay, well, women are here to carry children, give birth. That's pretty much it. Yeah. They'll have some pain along the way, but they're clearly just, you know… What's the word, amplifying that pain, it's clearly a psychological issue.
They're making themselves feel worse by focusing on it. We can't really do anything. So just other than tell them to get pregnant, because then obviously they don't have to focus on that. But then, you know, I've got friends who’ve been pregnant and that brings a whole other slew of women's health care issues, just because you're pregnant.
Doesn't mean period cramps. You know, it doesn't mean, Oh yeah, it's suddenly easy and butterflies. But it's just insane. S,o I think there is a massive psychological thing behind it. And for me hearing the stories of how easily and quickly back then, especially, they would just dish out a hysterectomy like that was the cure…
And then they think, okay, well, yeah, we'll give this woman a hysterectomy. And then she, you know, she'll be fine because it's all in her head. And if we basically remove the object. So, you know, your whole uterus, if we remove this, all your reproductive organs as a woman, and we say to you, yep, cool. We're removing this. The problem is there. So psychologically you weren't focusing on it anymore. You know, there you go.
But I don't think that was ever the case because, you know, I think my Nana would have had more kids if she could have. I think she was confused and conflicted about why that had been done to her at such a young age.
And I think she thought it had a lot to do with the changes that she went through. Not only physically, but mentally and you know, in her later life, unfortunately, you know, she did, she got breast cancer and she survived it, which was amazing. But, you know, she, she, she then forever wondered has this happened because of the way I was treated or has this happened because I was given a hysterectomy so early…
And in the back of her mind, everything would be psychological then, because that's what she'd had drummed into her, that her pain was psychological you know, that it must've just been in our heads, but no pain could be that bad because that's what we're built for.
Which is such a dangerous notion to be even suggesting to women, yet was so common and still happens in too many instances. The conversation around how women have been treated in terms of their reproductive healthcare involves so much horrifying history, and still today there is such pushback in terms of offering adequate support, in terms of GPs being adequately educated on the many varied presentations of reproductive pain and related conditions, of funding for research into these issues so we can move on from just the generic “here’s the Pill.”
On that note… How have you felt the GPs especially have spoken to you around the pill, in particular in terms of providing relevant information or resources of support, or even alternatives as you decided to come off it recently. Have you found that you’ve been presented with adequate choices or information?
No, I'm laughing because the easy answer is no, you know. No, I've not felt that, I've not felt informed. I've not felt supported.
I've not felt. And this is from the start of the journey. Like you mentioned, I was put on it (the pill) as a ‘fix’ for my periods. As I mentioned earlier, it's like a band-aid; Here you go. We'll cover up the problem. There you go. It's dealt with, and it, and it wasn't.
I know some people, they went on the pill at 16 purely to not get pregnant and they've had no problems and they're like, yeah, great. You know, it's worked for them. I haven't gotten pregnant. I can have sex. Great, fabulous. For those cases, I'm super happy that it works for those women. But for me, it was trying, you know, like you said, it was used as a “Oh, Hey, this will fix your problems.”
Well, it won't because you don't know what the cause is. So how can you prescribe treatment for something that you don't know? It just, it just makes me laugh because you could apply that to anything. And funnily enough, because my car recently has just come back from, from the mechanics…
I'm thinking of like the engine of a car, you know, and how meticulous and mechanical it is. And I'm not, by the way, I'm not comparing women to cars. That is not what I'm doing. It's just the first analogy I have in my brain. You know, you've got an issue, a warning light comes on. You don't just go ‘well never mind.’ I mean, don't get me wrong. I, you know, some people do go “I'll ignore that and see what happens.” Great. But you know, if you've got this car, like I had an engine warning light came on and I was like, something is not right here. There's clearly an issue. The car is telling me there's an issue. I'm going to take it to someone who's going to look at every aspect of it.
And that's what they did. They looked at every inch of the car. Fixed one thing, tried it. Realised that's not what the issue was then fixed the second thing. Great. That was what the issue was. Yes. Okay.
I'm thinking of the fact that, you know, I've had this issue, I've come to you, a doctor and expert in your field and I've said to you, hello, I have an issue. These are the symptoms. This is, this is what I'm showing you. Let's get down to the nitty gritty and find out what is causing all this.
But no, that's not what happens. I get either misdiagnosed. What, like many hundreds of thousands of millions of women do, or I get told like hundreds of thousands of millions of women do here, go on this pill. Yeah, carry on. Sorry. No, no, no, no, no. Don't, you know, it's one of those things. A lot of people have said to me, I can't believe your mum let you go on the pill at such a young age.
But here’s the thing. My mom, I mentioned she had me when she was 18. And she, you know, never had prior problems with her period. She was trusting the doctors. She was like, well, the doctor's gonna know what he's talking about. Who am I to question this.
So yeah, l et's try this. And she was actually appalled that people say that because I think there's a portion of people who connect going on the pill to a sexual thing immediately? I feel like that's very common, like, “Oh, so you're going to let her have sex” as opposed to “Oh, your daughter has a chronic pain issue every month that's causing her to lose full days and the doctor has recommended this medication?”
And, and for anyone that knows my mum, they will know it definitely wasn't a case of Oh, I'm going to put her on this so she can have sex. You know, it wasn't, it was “I'm going to do this because my daughter is in chronic pain, like you've just said
Another thing I haven't actually mentioned was, um, wellness.
Sorry. I have mentioned that I came off the pill, uh, five months ago and this has just been met with complete and utter confusion, shock, and a lack of respect from healthcare professionals is the only way I can put it, which is, you know… When I called in December to mention about the pain coming back on my left ovary, I was asked why I had come off the pill.
And I explained, you know, as I mentioned previously, that it was a mix of wanting to understand my body, wanting to understand my Endo, wanting to see my symptoms and also, you know, thinking about having a kid. And apparently those, those, those were still not good enough reasons.
Apparently I, you know, how could I expect to not be in pain when I'm not on the pill?
And I tried to explain to the doctor that the pill doesn't cure Endometriosis. I know right. Does it help the symptoms? Mildly of course, along with all the other medications and drugs that I'm been pumping into my body for 11 and a half years, but, you know, did it, is it going to help me on my journey to possibly being able to have kids?
Because also I'm really sorry, but you know… I mean, a doctor said to me that when you shove this chemical into your body for 10+ years and then come off it and have kids.... it’s not always Wham. Bam. Thank you. Ma'am.
I'm sure that does happen to a percentage of women and for those women, I say, congratulations. That's amazing. I, you know, I'm very happy for you. But, I've been on the pill for so long that a doctor told me it was going to take 6-12 months for it just to come out my system.
Then you add that to the trouble of getting pregnant when you have Endometriosis? So, I could be trying for four years.
A few months back I had to go to A&E when I had my first ever proper anxiety attack. And I was in the hospital for a few hours. I had to be monitored. And there were a few things that I think triggered it, but because I have no idea of what this medication has done to my body, I mentioned to this really incredible female doctor that “Hey, I stopped the pill by this point about two, three months, do you think, that could have had anything to do with this?” And instead of saying yes or no, she said, why did you come off the pill? And I said to her, that's not, that's not an answer…
You're basically answering me with a question. And she said to me, well, yeah, because she couldn’t understand why I’d come off the pill. And I said, well, does it have anything to do with this anxiety attack or not? And she said, no it’s very unlikely. It'd be like 0.001% chance. But again, can you please explain to me why you came off the pill?
And I had to go through the whole process. Again, and it's so funny because one other thing I do want to mention is that the first thing I was recommended. Uh, after my endometriosis, in fact, not even after but in the pre-op was that they wanted to fit me with a coil during surgery.
They wanted to put in something that was another hat, you know, contained more hormones because they felt that most women who had it fitted, with endometriosis, had seen success with it.
But then you balance that with a few support-groups that I've joined, you know, through social media, and no one there actually seems to have had a good time on the coil.
So, I was getting very conflicting arguments and I didn't know what to do. And again, I said no to it personally, because I just thought, again, that's not a fix. That's literally just another Band-Aid. On top of the problem.
it seems like a very common issue. I mean, I've had a similar experience in terms of conversations around the pill, where there seems to be a lot of expectation and little open conversation. I mean, if I walked in there and said, I've broken my arm, no one is going to question me if my arm is dangling on my side.
But if it seems like this issue is so touchy. But I’m also finding that if my other half, or if men, go in and say this is a pain I have, they seem to be taken very seriously very quickly. Whereas if we go in and say, this is my choice, this is my pain. This is my whatever… For women, but also in particular, when it comes to reproductive organs, it just doesn't seem to be trusted. I imagine it comes back to a lot of the, the idea of choice around your body.
I have this kind of pain and I know my body and circumstances and needs better than you do because I've been living in it.
What you've just said has made me think of something, which is, I have a history in my family of not only breasts but also ovarian cancer.
And when I saw that doctor and she told me she felt a mass, I instantly began to panic and they sent me straight to emergency, and I had to have an internal scan and then ultrasound and all of this internal examination... And I was there for hours. And, I basically requested, because you have to request them for a cancer screening… And I think this was in my early twenties. I can't recall the exact age by this point.
But I was told to go and fill out the most paperwork I've ever had to fill out around something. Every relative that I knew that had had breast or ovarian cancer and why I was asking for the screening or any other kinds of cancer for that matter, because, you know, I have had males in my family that have had cancer as well.
So, I filled out this paperwork, which took ages. Then I had to drop it off to my GP. Bear in mind, I'd given my GP the brief overview of my history and why I wanted the cancer screening already. But I had to go in, fill out this paperwork and send it off. And I think it was six weeks later, I received a letter from the NHS telling me that the details I had provided had not matched the history that the GP had provided.
Therefore I was not going to be given one, and I instantly thought. Right, right. But I'm not just standing here crying wolf. YOU have told me I have a mass on my ovary. You don't know what it is. You're not doing an operation to find out what it is. And I have, you know, had these relatives have not only cancer, but specifically ovarian cancer specifically.
And now you've told me you felt a mass... So at what point are we all going to sit down and take this seriously?
It's insane because even if they hadn't found the mass the mind blowing thing is, if they took it seriously and provided a screening and provided a blood test… Like if they did the sort of preventative care measures, they would save so much money in time in the long run so much across the board.
It’s just shocking, the fights we have to take and the ways women often have to teach each other how to advocate for ourselves and our bodies in the most effective ways, how to navigate the system to just be taken seriously, in ways that ultimately would help everyone.
Which brings me to another question, around education. I’ve certainly found that there was a lot lacking in terms of my official education or schooling in terms of understanding my own body. I mean we covered the basics of course ala biology 101, but understanding my reproductive organs, my period cycle, how it all worked and how uniquely personal it could be… I absolutely felt that was severely lacking growing up.
Is there anything you wish you would have been taught, or that your teenage self would have known around these issues?
God, there's so many things. Oh God. But pinpointing one…
There's so many things still to this day, there are still things that somebody tells me and I'm like, Really, and then I go and look it up myself.
And I think this is something that I did learn probably later than women should learn. And then I'm still mind-blown that it's not something they teach you, that women only have a certain number of eggs in their lifetime, viable eggs I mean.
I mean I learned that through a medical procedure where they actually tested my egg count in my early twenties, but would never have otherwise realised, I don't think.
And the reason I paused when I said that is because I am still mind blown by the fact that, you know, regardless of if you have PCOS or Endometriosis or, you know, or any other issues… Like, right, okay. So you still only have SO many viable chances to get pregnant if that's what you want.
But that's not what we're taught. And it's so funny because a lesson I was taught in school was how to use a condom.
Which, yeah, I'm sure how to use a condom has come in handy. Let's not lie, but. I'd like to stress, this is the most mind blowing, I went to an all-girls school.
Right? And it was a thing when I was, you know, 15, 16 that because we went to an all-girls school, we were expected to be boy crazy. And don't get me wrong. Some of us were, but it was like this huge stereotype.
We'd gone to it to an all-girls school. And we must have been boy crazy because we were deprived of these boys. Um, and so it meant we were all, if we were with any boys, we were clearly having sex and they must teach us how to use condoms.
Because as you know, we couldn't rely on the guy as what we were told to always be prepared, which again, mind-blowing.
Such a crazy narrative to place in a teenage girl's head, to have that as a life lesson; “don't trust men to be responsible for anything in life, especially not your reproduction.”
I would be curious to hear your thoughts on that too. Because to me, I would imagine if those sex ed classes actually focused more on education around reproduction in general, in terms of biology and organs and reproductive health not just being linked to whether or not you want to have children… Personally, I would imagine that if that education was more comprehensive and less shunned from, men would also hugely benefit from having that knowledge of how women's reproductive systems work, how pain works, how periods work.
Personally, and this was back in Sweden, my experience was that they actually put us in separate rooms, boys and girls I mean, and a lot of the chats were focused on STDs and how to get a condom onto a banana. And again, very lacking in terms of the shared responsibilities or awareness. And I just think it would benefit men massively as well, growing up, to understand women’s bodies, periods, hormones, as well as of course their own. And that boys who got to understand it all on a much more natural and normalised level, might just grow up to be men who understood and could advocate and support and in general have an awareness around that.
That’s so interesting to hear what it was like in Sweden. Here it wasn't talked about in primary school. And I know now a few of my friends have kids, and they, you know, it's taught, but it's very much like “this is how a baby is made".
I'm not in the class. I don't know how they teach it to the children, but I just think it would benefit men so massively from hearing the basics. Women have a period every month. This is why they have a period every month. This is how it affects them. This is how it, you know, this is what can go wrong as well.
These are some of the conditions that women can have. And do you know what don't get me wrong, I also agree vice-versa, there are things, there are issues that I know where guys have had injuries down there, or there are medical problems that I've known that guys had down there and I never knew about it.
And I thought, Oh God, I wish I could kind of give some more, not sympathy... That's not the right word, but some more support, but it's hard.
And the fact that you have to now go and research that yourself, it was like when I got the false diagnosis with PCOS, and speaking to a few men in my life at that was so interesting.
I was dating a guy at the time and I told him and he just went okay, cool. It was like, it's not a big issue though, Is it? And I was like, Oh, okay then. And then I, you know, I told my dad and my brother and, very fortunately, like I said, my mom is French and we, there is no subject off the table with us.
And she grew up in a household where they talked about everything from sex to STDs. But if something, you know, like you've just said, it's not just sex and STDs. It's also, is there something wrong? Down there. Is there a pain? Is there a lump? Is there something, is there a smell?
I know, sorry. That might be TMI, but it's important to talk about it.
It's not TMI today.
Exactly, you know, is something not right? Does it not feel right? You know? And having that confidence, you know, the understanding that if something's not right, it's probably not right for a reason.
And it's fine to go and talk about it. And I remember telling my dad about the PCOS at the time and he was like “I don't know what this is. I've never heard of it. I'm going to go and research it.”
And that's what he did. He went away, he did his research and he basically came back and he was like, yeah ok. This is what I found and he was able to express his concerns over someone that he loves having this. And then it was so funny because we had to go through the exact same thing. And like I said, I've been in a long-term relationship now for a while. And when I finally got told that yep, it Is endometriosis, my partner and my dad, and even my brother, all went away separately. And that's what was so funny and sweet about it. And did it. They did the research on it. And I live with my partner and he came back and he was like, “I've read that this helps. And this doesn't, and you might feel like this and that we could do this. And you know, I can support you in this way.”
And my dad was like, okay, these are the things I want you to be wary of because you can, you know, there are a hell of a lot more chances of women with endo actually developing diabetes. And diabetes is a huge thing for my dad because my grandfather has it.
And he was like, you know, you just look out for those things. I don't want you getting more sick than you already are. I've seen you in enough pain. And so, it was really interesting to me that these men were going and doing the research. And I thought if only men and women were educated about reproductive organs and reproductive health and everything that goes along with it from a younger age, we would all be that little bit more well-informed.
That is so incredible, and I love that they felt confident enough to go away separately and research and really get stuck in. It’s amazing, I hope more partners and those around anyone going through chronic pain can do that really.
I also wanted to shift gears slightly here and talk a bit about online communities. I know they have helped me on my journey, and I find a lot of groups incredibly informative and empowering, and I just wanted to hear a bit about your thoughts on them?
Yeah, no, definitely. So when I got diagnosed, I actually got told by the doctor in Chelsea and Westminster hospital that there were resources and people I could talk to about endometriosis because it is a chronic illness and because women have to live with it and they go through so much with it.
And, you know, I could do it (join these groups) anonymously. I can do it, you know, however I wanted and I kind of thought about it. And at the time I figured I need to go away and deal with this myself first.
And then I'll see how I feel about joining a community.
And I was doing some research. And when I was going around my research, I stumbled across Endometriosis UK, and they were so informative and so amazing. And they have an incredible website, which I recommend for people who do and don't have endometriosis to go and check out.
And you can, you know, donate to them. You can fundraise for them, or you can just subscribe.
One of the things they’ve recently been working on is endometriosis friendly employers, which is incredible.
It’s amazing. And I was so grateful I'd found that website. I wanted to do more searching and I have Facebook and I have Instagram and I'm very fortunate to be able to access those things. And I thought, well, let me have a look and just see…
And, I mean, one of the first support groups I joined, which has been incredible, is on Facebook. It's a UK Endo support and awareness group. It's a private one and it's run by a few women that have it, and basically there's very strict rules around joining this group.
You don't necessarily have to have it. They do try to keep it to women only, but the group, the aim is to raise awareness for endometriosis, as well as just providing information and advice to those who may need it. End emotional support as well, you know, and just sharing tips.
None of them are doctors. But, they basically just reference that journey. And I joined that group and just didn't post in it. I didn't chat with anyone in it. But just reading all these stories from these women, all these women asking questions and women coming back and being so supportive and just saying, you know, I don't have the answer for you. I'm sorry, but I know what you're feeling and I'm really sorry. And you're not alone.
That was incredible because I just thought, Oh my God, there are so many other women here. I'm not doing this on my own.
Not that for a second I ever thought I was, you know, I’m very fortunate. I have such an amazing support system, but it's different when there's somebody actually understanding, you know, when you say Oh, Hey, I have had really bad lower back pain for like two weeks of the month. Is this normal?
And then going, yeah, I literally moved with a hot water bottle strapped to my back, you know, it makes you kind of think Oh, okay. I'm not crazy.
And so that's amazing. And then. After that I looked on Instagram and I found, I mean I was already following the Endometriosis UK as I mentioned earlier, because they are just incredible and very informative and they post anytime there's a news update, but then there are also just so many women that had their own stories.
And there's a couple of Instagram threads I follow, which are amazing. You know, there's one called Living with Endometriosis and she's just shared her story and the highs and the lows of it. And it is really interesting.
One of my favourite ones is a group where they basically just talk about women who also have IBS and endometriosis, as just because you have endometriosis doesn't mean you actually can’t have anything else too.
And it's stuff like that. That's really helpful to see. And it kind of inspired me to create my own Instagram as well.
It’s called Endosister2021. And the aim of it is to be a really mixed channel. But basically my main aim is obviously to share my story. To talk about what I've been through, but also just launch what I'm going to call Women's Wednesdays where we are just talking about women's healthcare in general.
And this is why it's so great to speak to you today because it's talking about women who have gone to a doctor's appointment and either been told it's all in their head or been misdiagnosed or been prescribed the pill for something or just been misinformed.
And so I just want to make it a safe space. Women can DM me. They can share their stories if they want, and if they don't want that's fine too. But I personally have found that having that support in place has been what's encouraged me and also empowered me to speak about my journey.
I know I'm not going to be running this channel completely openly, I'm going to be doing it anonymously, but that's not because I don't want people to know my business or who I am.
It's more because I want to put the focus on the journey itself and the condition and the chronic illness itself, rather than me and my lifestyle and my choices, because what I choose to do, not everyone's going to. And that is fine. I just want women to come and if they want to share it anonymously as well they can.
And if not, then that's also fine, but I have found so much love and support and knowledge from these groups. That's why I just want to keep on this.
I think that's so important and so powerful, and I'm so excited to see that grow. Is there anything else that you feel we haven't covered or you want to add, or you want to highlight or yeah. Do you have anything else on your mind that you want to get out there?
One thing I can say for myself, personally, that I would feel is very important to is that it's okay to take your time with whatever you need, whether it be endometriosis, PCOS, anything, you know, and there's so many more that I'm not highlighting.
Handle it the way you need to. You might get told by doctors, by friends, by family that, you know, well look at this side of it or think of it this way, or etc etc. And that is great. And it's really good to have and very inspiring sometimes but also you know, very hard to hear other times.
I've learned a lot over the past 18 months, and one thing is that I've not always been very kind to myself. I am living with a chronic illness and I think you have to be kind to yourself first and foremost, whether you're living with a chronic illness or not, to be honest, but you need to remember that it is okay to handle it, how you need to. From reading a bunch of books on it and researching it and getting all the information you need on it. Great. If, if handling it is not wanting to know any more about it because you’re so fed up with it and it's already consumed so much of you. Also fine.
That is also okay. There is no wrong or right answer. And I think that was the problem with me personally was I was trying to make sure I had all the answers, but at the same time, not feeling informed because I didn't want to give up. This chronic illness, any more of my energy. And I just have to learn that that is okay.
And I think that that's the only thing I would want to make sure everyone knows, that however you choose to handle it, there is no wrong or right way.
That’s brilliant. I can’t wait to watch the account grow and see more stories being shared and hopefully positive change so that the next generations do not face an average wait time of 7.5 years before receiving a diagnosis. Not to mention more funding for research and better treatment options than just surgery.
Thank you so much for sharing your story so candidly, it’s truly humbling to hear and I hope it helps someone else feel less alone on their journey, or perhaps raises some awareness around the condition for another.
If YOU want to find out more or are struggling, I highly recommend having a peak at one of the links below: