By Emilia Santos Thomas
“You know, even if you look around this coffee shop now, there are probably another two people in here that have it, whether or not they know it.” Sitting upstairs in Nero on a normal Tuesday afternoon, surrounded by students studying and shoppers avoiding the cold, the gravity of that statement hits me. The “it” isn’t a cold, cancer, or the flu, but Endometriosis – the chronic illness that Jen and 1.5 million others in the UK live with every day. Jen runs her amazing Instagram @jen.dometriosis to share the reality of life with endometriosis and adenomyosis and raise awareness about the ‘silent epidemic’ (Kho, 2022).
Endometriosis affects an estimated one in ten people with uteruses in the UK. It is a chronic illness that occurs when tissue similar to the lining of the uterus appears in other areas of the body. These cells grow and deepen over time, causing massive inflammation, adhesions and even infiltrating organs. Endometriosis can occur in any organ of the body, including the brain, and is much more than the period disease that it is often reduced to. I sat down with Jen to discuss the confusion and misinformation around endometriosis, her experience with treatment in the medical system, what needs to be done next, and the strength and purpose she finds in online community.
Well, I think the first question to ask is what does endometriosis mean for you? What has your experience with it been like?
It’s really hard to sum that up. It’s a long journey. I first started getting symptoms at my first period, so when I was 11, and I was diagnosed at 33, just to give you an idea of how long that took. Endometriosis is hugely misunderstood, hugely underfunded, and under-researched and unfortunately, it means that a lot of women end up suffering for a ridiculously large amount of time, and in that time far too much damage is done than if it was caught early on. I had my first surgery in May 2022, which is when I was diagnosed, and they removed a certain amount of the disease, which we thought was all of it. And I’m now having surgery again because it’s now attacking my kidneys, it’s attacking other vital organs. So to try and prevent organ damage and failure, I’m having more surgery.
It’s definitely a journey that’s never-ending, or it seems never-ending at the time. It’s just so misunderstood. I think if I had to choose one word for what endometriosis means to me, it’s ‘confusing’. Because you end up gaslighting yourself, you’ve been gaslit for so long by the medical professionals, who just tell you it’s just normal, it’s just bad periods. It’s just, “crack on, be a good woman”. For example, one doctor actually told me that I’m not special and to just carry on. And I mean, actually, he wasn’t wrong, I’m not special, I’m not unique. One in ten of us has this. You know, even if you look around this coffee shop now, there are probably another two people in here that have it, whether or not they know it. That’s probably how I would sum that up!
When was it that you found out about endometriosis? Was it a long time before you actually got diagnosed?
My mum had endometriosis. It’s not a hereditary condition, but it does increase your chances if somebody in your close family has had it. Unfortunately, my mum had it, and she had surgery when I was very young. Because of her suffering, she knew some red flags to watch out for and was able to support me so much. I had guessed that I had endometriosis, and for a long time when my period would start I would say to my friend, “Oh, endo is kicking my butt today”. But every time I went to a doctor and said, “I think I have it” it was like “No, no”, you know, that patronising little look. And so, yeah, I’d heard of it, but I did not understand what it was. Half the stuff that we know now was not known when my mum was going through it at all, so she’s still learning too. You think you know about it, but there’s so much misinformation out there, which is half the battle. For example, half the people that work in this field can’t give you the right definition of endometriosis. I had to explain it to a GP the other day, and you’re kind of thinking – you’re the frontline that people come to for help and yet I’m educating you on this disease that affects 200 million people worldwide. That’s a crazy amount of people! So sometimes there’s misinformation that’s been perpetuated for a very long time. No one even knows what causes it, there’s no cure. It’s baffling, absolutely baffling why it’s not more of a priority… But, as many people probably know, it’s because it’s “female”!
Yes! I was going to mention that. What do you think the next step needs to be so that this disease can be better understood?
Prioritising it enough to fund it and research into it is the key. That’s the important next step. But unfortunately, most of the funding that is given, which is a tiny percentage of the funding available, is on drug trials and things that aren’t related to curing endometriosis, it’s more just managing it. It’s really frustrating.
I don’t want to sound conspiratorial or anything. But it is easy to follow the money and see that it is being spent on drug trials and all that. It’s a tough balancing act. Medicine is an industry like any other, and it needs to profit and it needs to grow. And unfortunately to do that you need funding and money, and the big pharmaceutical companies are where that money comes from.
“I mean, endometriosis has been found on every organ in the body. People have had it on the brain, in their nose, and on their eyes. It is not a period disease.”
You said you had to explain something to a GP recently. What has your experience been with the medical system like in Wales and here?
Up and down, up and down. When I first went to a GP, I was probably 12 when we realised that, okay, my periods aren’t settling into any kind of rhythm and something was not right. So I was put on the pill, the contraceptive pill, at 12 and that was it. It was just like “Go on, that will sort you out” – there was no further investigation of why I was in so much pain. There was no review or follow up. So I ended up being on the pill until I was maybe 30 and I was kind of like, I want to give my body a rest now. In that time, I did go to my GP a few times and say that every month I am floored, literally curled on the floor, vomiting, passing out. This is not right. Every single time they said, “No, it’s normal, absolutely fine, this is what women go through, off you go.” One time, one guy got so fed up with me going that he just started throwing Latin terms at me. He was like, “Oh, you have dysmenorrhea” – which is just Latin for painful periods, painful, unexplained periods. I thought, “I kind of know what that means, but okay.” So yeah, that was the bulk of my experience.
And then, when I came off the pill, I was hit by a truckload of symptoms. They literally just started happening every single day instead of being focused around my period. Because what the contraceptive pill does, is it masks your symptoms. It doesn’t slow the growth of endometriosis. It doesn’t reduce it, shrink it, or all these things that people are actually told it does do; it completely allows the endometriosis to carry on growing, affecting things. So when I came off the pill, all of those symptoms came back with a vengeance. I mean, the damage that was done inside is completely irreparable. And like I said, I’m now having more surgery to avoid kidney failure, so it’s great fun. I mean, endometriosis has been found on every organ in the body. People have had it on the brain, in their nose, and on their eyes. It is not a period disease.
After that, I went back and I was like, right, I’m not taking no for an answer now. This is every day now. And I was sent for an ultrasound on the NHS and that came through within about six weeks. And I thought, okay, I can deal with that kind of waiting time. However, the ultrasound, according to a consultant, was not worth the paper it was written on. She couldn’t even find my ovary. It was an absolute shambles. And the writing that they had put underneath it, the consultant said, “This doesn’t even mean anything, we’re gonna have to start from scratch”. That was in December 2021. It was so frustrating because it was so physically painful as well. So I was referred to the Endo clinic in November 2021 and then my first appointment with them was in October 2022. In the meantime, though, I went private, because there was just no way I could cope for that long. And I know there’s so much going on with Covid and recovering from wait times, the backlogs, and things, but gynaecology is the slowest to recover. It’s only at 64% of its pre-pandemic levels. It’s by far the lowest of all of the departments, and yeah, I was just in too much pain. I couldn’t wait, so I ended up going private.
What was the treatment like going privately in comparison?
Fast! I think we made the decision to go private in February this year (2022), which is when I received the letter saying your NHS appointment is in October. So yeah, that was the end of February and then in May, I had my surgery. It was very, very quick. Private doesn’t always mean better, but one thing it is is fast.
My relationship with the medical system is very complicated. Because I’m so frustrated and I’m so angry, but at the same time, they don’t know what they don’t know. I was talking to one doctor and he was a consultant gynaecologist, so specialised in his field – he wasn’t an endometriosis specialist I should clarify – but he’s a gynaecologist. He had a 40-minute lecture on endometriosis and associated conditions whilst he was at uni, and that was it. This is a man in his forties or fifties, and he’s talking about when he was in his early twenties and that’s it, there’s been no update, there’s been no further training, and these are the people that patients are being sent to, to be diagnosed, to be treated. They don’t have the knowledge. But can you be angry with that specific doctor if they don’t know? It’s complicated. The information in textbooks and lectures is outdated. They’re perpetuating theories of what causes endometriosis that are completely disproven. We’re still being told endometriosis is caused by retrograde menstruation, when that has been completely proved wrong on so many occasions, and yet that’s what the gynaecologist just told me was causing this. It’s absolutely bonkers.
You’ve talked about your experience with endometriosis specialists and a lot of them seem to be men. How has your experience been with that?
That’s actually a question that’s been raised recently online – just out of curiosity, why do so many men go into this as a specialism? And I couldn’t tell you the answer to that.
I know that there are some amazing gynos and endometriosis specialists who are female, but I personally have not been treated by a female specialist. The most blatant sexism I have faced has been from the Primary Care providers (GPs etc) but, on the whole, the consultants I have seen have been better. There have, however, been a couple of moments that have left me completely gobsmacked.
For example, my husband came with me to a consultation, and we were discussing the option of a hysterectomy. And I had said to my husband in the car, obviously, it’s quite an emotional topic, so if I forget anything, these are the questions that I wanted the answers to. Feel free to ask them if I forget. So he came in with me and he said “Oh, don’t forget, you wanted to ask if the cervix would be removed as well,” because there are lots of different types of hysterectomies, depending on whether you remove the ovaries, the fallopian tubes, the cervix, or just the uterus. The one bonus of getting your cervix removed is you don’t have to have your smear test anymore. So I kind of wanted that removed – get your smear tests though, folks! So in the car, I had said I wanted to ask that question. When my husband brought it up, the consultant turned to him and said, “So I see you’ve probably done some research that removing the cervix can make sex less pleasurable for the man.” I literally sat there and my husband just sat there like, “What is going on? I did not ask this question for that!” And we both just sat there stunned in silence as the consultant started going off into a spiel about sexual satisfaction. For men, not for women!
He spoke to my husband the whole time he did this talk and then he turned to me and he went, but if I’m keeping it, you have to promise me you’ll still get your smears. And that was it. That was my only inclusion in this conversation. I was like, wow, okay! So yeah, there are moments like that, but when it comes to the actual treatment and care, it’s not been an issue.
And it is a question, do you blame the individual or do you blame the system?
It’s a huge multidisciplinary problem. It’s education, it’s awareness, it’s encouraging girls to talk and speak up. I say, when I try to explain it to people, there’s three issues when it comes to endometriosis care. The first is getting girls, especially when they’re younger, to talk about it, and realise that something’s not right. Knowing what to look for and knowing this isn’t right, this needs further investigation. Then it’s finding somebody to listen, which should be your primary care frontline GP, and getting them to take you seriously and believe you. And then it’s having the specialist, the true specialist, that you can then go to for treatment that knows what they’re doing, knows the up-to-date, current information.
And it’s those three things that need to change to actually make a difference. Just doing one or the other, it doesn’t work, you know. It doesn’t matter if you have all the specialists in the world if you can’t access them. It doesn’t matter if you have all of this education and training and understanding, if young girls in school don’t know what red flags are and then by the time they’re older and do, their organs are failing because it’s been left to grow for so long. You need all three to actually make a difference.
“It’s a huge multidisciplinary problem. It’s education, it’s awareness, it’s encouraging girls to talk and speak up.“
Cartesian dualism separates our medical system. You have your brain, you have your body. Even when you look at specialists in a hospital, it’s so siloed. Whereas endometriosis affects so many bits of your body. I’m currently seeing a respiratory consultant in case it’s spread to my lungs. I’m seeing a urologist because I need him in my surgery to stent my ureters. I have my gynaecologist because he’s doing a hysterectomy. It’s all of these people together and if your GP just sees you and says “oh, your symptoms are due to IBS”, for example, “I’ll send you to a gastroenterologist”. They’re never going to pick up endometriosis. Even though one of the main symptoms of it is IBS-type symptoms. This siloed medical system that we have is infuriating. And it’s not rare, endometriosis isn’t alone in affecting multiple systems in our body, and in fact, the mental health implications that it has as well are seen as a complete aside.
Yeah, I mean, thinking about mental health, and also just in general, how do you try to cope with endometriosis, because it affects so much of your life?
Not well! It’s difficult, it’s very difficult. If I understand something, I can cope with it and process it a little bit more. So I threw myself into research and understanding endometriosis, understanding why we’re in this state, and understanding what’s going on in my body. And that helped me. Rather than just feeling like I was leaving it up to everybody else. Especially because I’d been dismissed, ignored, and made fun of (by doctors in particular) in the past. I felt like if I was in a bit more control, that would help. I would be a huge liar and hypocrite if I said it had not affected my mental health. I mean, endometriosis and adenomyosis have taken away so much from me – they’ve taken away my career, they’ve taken away my fertility, they’ve taken away so, so much. I actually started going to therapy to deal with it because you know, therapy’s there, and it’s meant to be used. Why not use it? We take care of what we put in our bodies, we’re so concerned about going to the gym, so why not take care of our mental health too? It’s hard. It’s very hard. You get good days, and you get bad days, as everybody does. I think activism and campaigning helped me as well. I actually went to Newnham yesterday for their Music for the Festive Season and they had some banners up for their 150th anniversary. There was a quote on one of them and it said: I not only hear your story, but I promise to act upon it.
And that, for me, is huge. To have other people feel like someone is listening and doing something. When I started my Instagram page, I think it was just before my first surgery, and I was just really bored and my brain was going to mush, and I thought if I don’t do something I’m gonna go crazy. So I started that just to kind of share what was happening. And then I started getting so many messages from other people suffering with endometriosis, saying that it was helping them and how much they appreciated that somebody was doing something. And that’s given me a lot of, I guess, purpose? It sounds a bit mushy, but it’s given me that drive back and that’s really helped me deal with it.
But you can’t do it alone. That includes your medical team, but you also need people around you at home and in life that can help support you. Like we were saying, it’s holistic, it’s multidisciplinary, and that goes for the people that are surrounding you outside of the hospital as well. My husband, my parents, my friends, and even my cats, they all help me immeasurably. You definitely need that support system because it can get pretty, pretty bleak and you start to feel pretty lonely as well. You can convince yourself that you are the only one going through it. Which I mean statistically is just nonsense when there are 200 million other people that are going through it. And when you think about that, you kind of feel like there’s some people that have your back a bit. Which again, that helps.
Speaking of community and feeling as though there are people who share and understand your experience. What has been your experience of setting up your Instagram and creating an online community?
It’s been incredible. Especially when we posted the pictures of the artwork my makeup artist friend did on me to show what endometriosis would look like if you could see it. I had thousands of messages. It completely went nuts. And they were from all over the world. People that were in their seventies, people that were in their teens, and it was amazing. I was getting so emotional reading some of them. One of them in particular, this girl said that she showed it to her parents because they didn’t understand what she was going through and the pain that she was in. And she said she showed it to her parents and they actually broke down and get it now. That kind of reaction, I did not expect. Initially, I did it because I was getting a bit bored of people being like, “You don’t look sick”. And I was just getting really annoyed by it. So we thought, right, let’s show you what it actually looks like. I never expected it to hit a note with so many people all around the world. It just brings that idea back of, of those 200 million people and, you know, you are not alone actually, there’s so many people that get it and there’s so many people suffering that need something to change. It was kind of emotional and motivating combined, as most things are.
With that increasing acknowledgement and community are you seeing improvements more generally?
Things are changing, very, very slowly, but they are changing.
The battle now though is those three pillars that I mentioned: making sure people know what to look for; encouraging them to talk when something isn’t right and having somebody to listen. Things are changing in maybe one of them, but then not changing in the others. I mean, what good is it to speak up if nobody’s listening? So it’s making sure that those three pillars are moving forward simultaneously and in parallel ways, rather than one jumping ahead while the others are still really far back. I think what is changing though, gratefully, is that we are a lot more open about talking about these things, which is great, but then there’s that worry of, you know, is that just one subsect of society? You have to look at cultural differences where talking about your period is actually hugely taboo for reasons that aren’t just as simple as they might be for me. It’s always making sure that you have that lens of diversity and inclusion on when you’re looking at it. Because again, there’s no point pushing forward in one area if you’re leaving behind a whole lot of others.
Black women, for example, are notoriously left behind when it comes to gynaecological conditions, despite the fact that they’re more likely to suffer from things like fibroids. It’s having that lens of inclusion and making sure we’re bringing everybody forward and not just one subsect of society and calling that a win. It’s tricky, as with everything in this arena, it’s complicated. And again, there’s no simple fix. But I do think things are changing, it’s just very slowly, but you’ve got to have hope. Otherwise, it’s just bleak, isn’t it?
I mean, I suppose that’s what the Instagram community and stuff are there for, right? To give hope not just for the people who are following your account, but also for you as well, I assume.
Yes, completely. It’s being able to say “I’m in a flare today” and somebody’s like, “I’m there with you” or “Have you tried this? Do you need that?” It’s that support. Community is the best word for it really.
Somebody said to me the other day, it’s the worst club with the best people. I like that. Nobody wants to be in the club, but once you’re in, it’s good. I never expected to find a community. Because when I first was diagnosed, I’m not too proud to admit it, I was like, “Oh, woe is me! I’m the only one suffering, how dare they.” There is that feeling of outrage. And I still get it, I still get the anger. But I try to channel it now, rather than feeling angry about myself and my own body, I try to channel it to do something. Not in a toxic way or a ‘buck up’ kind of way. Definitely allow yourself to feel whatever you need to feel, but try not to get stuck in the negativity, to move through it, and to channel that energy into something that’s helpful.
“Speak up, even if it does end up being normal, whatever that is. But even if it isn’t anything more sinister, speak up because you are in pain and any pain should have its source investigated.”
It circles back to the mental health side of it, and therapy really helps with that kind of mindset. Therapy is never gonna cure your chronic illness. Let’s be frank. Some people have genuinely put that forward. You’re not gonna think yourself better. Which is infuriating when you hear that, you know? Have you tried being positive? ‘”Yes, I have, a lot. Thanks for that one. My kidney won’t fail now”. But there is a lot to be said for understanding your mind, how it works and channelling things instead of wallowing, which is definitely what I did at the start. Your pain can be a prison or a platform and I hope to use mine to help others in this situation.
What do you wish that you could tell your 11-year-old self now? Or yourself just after you were diagnosed?
I wish I could tell my 11, 12-year-old self to speak up. To not just be like, oh, I’ve got bad periods, and why can’t I deal with them like everybody else can? Why are they making me physically sick? It was that anger at my own body. And I wish that I didn’t give up then. But then again, I was a child, so I can’t be too harsh on myself, but I wish I could tell her just to believe in herself when she knew that something wasn’t right and to speak up a bit more.
And again, when I was waiting to be diagnosed and when I was diagnosed. I wish I could have said you know your body, you’re the one that lives in it every single day. You know, if something’s not right with it. And to trust that feeling and to make someone listen. But also to give yourself a break at the same time. I understand that those might seem contradictory. But give yourself a break, you’re doing the best you can.
Did being diagnosed change anything for you?
It’s validation, in a way. Two decades of being in pain and being told nothing’s wrong with you. To hear, okay, actually something quite serious is going on here. We need to do stuff before you lose organs. That is quite validating for yourself, that your pain has been recognized and your suffering has been recognized. That’s a relief to have that.
And also, initially, it was a sense of relief that I thought I would be fixed. But then you kind of go on this journey where you realise, actually this is chronic, there’s no cure, you’re not gonna get fixed. You need to adjust how you live and potentially your future plans. It was a really weird combination of relief and grief all mixed into one because you kind of start grieving your plans and your dreams and realising that actually maybe those things aren’t going to happen.
Again, as with all this stuff, it’s complicated and mixed and different every day. I still go through those cycles of gratitude and grief now that I’ve been diagnosed and I’m being treated by an incredible specialist. We are really lucky in Cambridge we have an incredible specialist who actually works at Addenbrookes. So once you’re through the waiting list you have a genuine specialist here, which is so rare. It’s that kind of gratitude that I have access to that resource and I’m being seen and I know I’m in safe hands, but then also a kind of grieving process. I still feel like that now. One day it can be fine and the next day I’ll be crying, and my husband’s like, “You okay? What’s wrong?” and I’ll say, I saw cute baby clothes and now I’m sad again. So yeah, it’s a day-at-a-time kind of job. For sure.
Finally, If there are people like your 11-year-old-self who think that something is wrong, but don’t know what to do, what would your advice be to them?
Speak up, even if it does end up being normal, whatever that is. But even if it isn’t anything more sinister, speak up because you are in pain and any pain should have its source investigated. That should just be a given. Whether that’s to a parent, an aunt, a teacher, or someone you trust, it doesn’t matter who it is, just start speaking up.
We are trained from tiny, tiny ages to be nice, to be kind, to be quiet. No – just, no. If you feel like something isn’t right, then say something. And keep saying it. If it doesn’t get better, keep saying it – don’t be told that you’re not special, and to just go away.
Speak up, you deserve to be listened to.
Find out more about endometriosis and keep up to date by following Jen’s Instagram. Thank you so much to Jen for talking with me and for working so hard to spread such an important message!
Feature Image Credits: Jennifer Moore
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