Tag: Endometriosis

  • ‘Endometriosis is not the endometrium’ – and repeat!

    ‘Endometriosis is not the endometrium’ – and repeat!

    A few months ago I received a message from Sarah, also known as MyPelvicPain on Instagram. Sarah had found my blog and we briefly discussed the commonalities of our experiences with pelvic pain, and when I followed her back I began to see just how many there were. If you follow Sarah, you’ll know she repeats one message more than others in her advocacy work – ‘endometriosis is not the endometrium’.

    Endometriosis is a condition that mystifies many doctors, let alone patients and their friends and family, and one of the most common misunderstandings is that it is the endometrium – the lining of the womb. In reality, endometriosis is a tissue a bit like the endometrium, except it is found outside of the womb – such as on the bladder, bowel, appendix, even in the chest cavity – and it behaves differently. These patches of endometriosis are known as lesions. It’s different still from adenomyosis, which is when the literal endometrium grows in the muscle wall of the womb. To complicate things further, ‘endometriomas’ are different again – also known as chocolate cysts, they are ovarian cysts filled with old blood. It is all so complicated and making the facts simple and communicable is a super important task. Yet for a few months, I kept wondering why the message ‘endometriosis is not the endometrium’ was appearing so often on my feed. Why did this message, which I knew to be accurate but understood why it was regularly misunderstood, need such constant reinforcement?

    In the end, of course, it was my own health that led me to finally clock the importance of knowing this vital distinction. By finally accepting it into the core of my understanding of the condition, it opened up a whole new appreciation for why traditional ‘treatments’ keep failing me (and so many others). The prescription I received three years ago for Mefanamic Acid to lighten menstrual bleeding didn’t work as the problem wasn’t menstrual bleeding, because endometriosis is not the endometrium. My surgeon, an expert in endometrial ablation, burning off the small lesions of endometriosis he could see didn’t work because endometriosis is not the endometrium, it doesn’t respond in the same way as the endometrium. Fitting a Mirena coil hasn’t greatly improved my pain because thinning the endometrium isn’t much help when endometriosis is not the endometrium. Some months after I got the Mirena coil and stopped having menstrual bleeds, I started bleeding from somewhere new – my rectum. I thought it couldn’t be endometriosis because the coil had thinned my endometrium so much that I wasn’t menstruating anymore, surely the same applied to the lesions of endometriosis? No, my GP indicated, because endometriosis is not the endometrium.

    Your entire perspective shifts once you fundamentally understand that endometriosis is not the endometrium, we are dealing with something far more sinister. And much like the condition itself, our knowledge of it is only just beginning to scrape the surface.

    Every day I learn something new about the condition, and my body, thanks to so many patients and doctors sharing their stories and research online. It’s these conversations that make such a difference to the patient experience. For that I am eternally grateful to Sarah and other advocates like her for educating and enlightening me every single day!

    Thanks to this great glossary of Endometriosis terminology for helping me make sure this blog is as accurate as possible. Some other great accounts to follow include endogirlsblog, endo_black, endosocialworker and endoqueer.

    It’s been a fairly frantic August so far – personally I turned 25 and became an aunt on the same day! There has also been a lot of heartache that could do with your support. If you can, please donate to the disaster relief in Lebanon – find a comprehensive list of charities that need support here; use this resource to complain about the dehumanising coverage of refugees arriving in the UK; and sign this petition about the incredibly unfair downgrading of exam results in the UK due to an elitist and unfair systemic response to the challenges posed by the pandemic. Finally, a reminder that I am currently raising money for Endometriosis UK by taking part in the #WalkForEndo – learn more and sponsor me here.

  • Different, not better: trying (and failing) to ignore my body

    Different, not better: trying (and failing) to ignore my body

    I have spent 12 months trying to ignore my body. My body has spent 12 months demonstrating how and why that is an impossible endeavour. This week it has been a year since I last published a blog and a year since I last (intentionally) sought medical intervention for endometriosis – happy birthday to my Mirena coil. 

    It’s been a big year, for me personally and for the world, and there’s been plenty to write about but for some reason I couldn’t bring myself to share any of it. I find it hard to express what stopped me but a read of Olivia Sudjic’s Exposure might enlighten you if you’re curious. The simplest explanation is that I didn’t want to. There’s also the fact that I have always tried to keep these blogs relatively positive in their outlook, and much of what I’ve been doing over the last year is coming to terms with the chronic element of endometriosis, a task that involves a significant distortion of optimism as you know it. Again, if you’re curious about how I began to think about that in a more positive light, I highly recommend reading Alison Kafer’s theorisation of crip time. 

    I’m sure as I slowly revive the blog I’ll fill you in on some of the things that have happened but here are the highlights: I graduated from my MSc in Gender and Sexuality, I moved to Brussels, Belgium where I’m still living and working a meaningful job that, refreshingly, doesn’t involve thinking about bodies all day. In many ways these three headlines are all connected to each other and to my attempt at ignoring my body. My MSc was, in the end, incredibly rewarding but it left me with a bit of a hangover. I spent last summer recovering from diagnostic surgery and a traumatic IUD insertion while writing a dissertation on the cultural backlash against hormonal contraception. The dissertation ended up being much more than that – really it was a manifesto for a hormonal feminism. Having been told not to intellectualise my health by an old therapist I did the exact opposite and while I would do the same again, I finally saw what the warning was about: I could no longer think about anything else. 

    So when I was offered a job in Belgium I grabbed the opportunity and saw it as a chance to find out what else I could think about. In many ways the plan was a success. Especially at the beginning, when I was hopeful that if I gave this new treatment a chance to work then maybe I might be able to forget about having endometriosis for a while. So I just ignored the old pains and the awful new ones that had arrived since I got the IUD. I ignored the fact that I hadn’t stopped bleeding for four months. I passed out from pain out on the metro and tried to ignore that too. I took a lot of painkillers and just kept waiting for the IUD to start working. I ignored the very obvious fact that ever since the coil insertion I had redeveloped vaginismus in a much more frightening way than before. I stopped tracking my bleeding or pain, and put every bad day behind me, trying not to notice how debilitating they were or how frequently they were coming. I would work all day and then return home exhausted to eat then sleep, sometimes taking a few moments to marvel at how my flatmates could work, exercise and have social lives. I tried dating again, and when I quickly realised that doing so would make me think about my body, pain and the fact that nothing had really changed, I promptly stopped. 

    Then in January 2020 I came down with the chickenpox at 24 years-old. As it took hold, I told myself it was all in my head, that everything I was feeling was imaginary. It was only when the blisters arrived that I began to believe my body and started to see how much impact the diagnostic process had on my mental health. There is nothing like an acute illness to make you dwell on a chronic one. It was horrible. Every medical intervention I’ve had has gradually chipped away any sense of sexiness I once had, and let me tell you, nothing will finish it off like chickenpox taking over your face and vulva. I wrote some very dark essays where I vowed to start listening to my body’s warning signs and then the files corrupted and I lost the motivation they captured along with the essays. I went for a mammoth hike and felt my body in a good way for the first time in months. It felt good to feel good and I tried to chase that feeling. 

    I finally stopped bleeding for the first time since the coil went in, only for blood to start emerging from new, scarier places. I ignored it. I noticed that I started bleeding after I ran for a bus or carried something heavy. So I stopped doing those things. Seeking good feelings and avoiding the bad ones seemed like a solid way to ignore my body in a slightly healthier way. And then a pandemic started.

    I talked myself out of my COVID symptoms, which were later confirmed by a positive antibody test. I used lockdown to redraft the novella I wrote in 2018 and while the process involved thinking about physical pain, it was easier than thinking about what I was going to do with the pain I felt now or that might get worse at any moment. My pain started to come back more frequently, in ways I could no longer ignore. My flatmates repeatedly implored me to call in sick to work. I again reverted to the logic of waiting until there was a ‘real’ reason, ignoring the fact that not resting immediately would probably cause that ‘real’ reason to arrive. When I bled I no longer reached for a menstrual cup. I finally acknowledged that the coil insertion was the last straw for my vagina: it had truly closed for business.  

    As lockdown began to ease in Belgium I went to see my GP. I had no intention of mentioning endometriosis, I just wanted a blood test and a repeat prescription. But she started to ask questions and I, reluctantly, answered them. ‘You can have surgery for endometriosis, you know?’, she said. I smiled politely and said I knew. After further probing I decided to give her the overview of what I had tried and where I was. She asked me what was next, did I want to seek treatment in Belgium? I didn’t want to seek treatment at all, doing so had only made things different, not better. She tells me I don’t have to suffer, that she knows Belgium’s sole endometriosis specialist personally, that I have options. I start to believe her. I’m not yet sure where that sits with my acceptance of crip time, but optimism is contagious and it was the driving force of this blog. It’s good to have a little back. It’s good to be back. 

    This summer I am taking part in Endometriosis UK’s #WalkForEndo. I will be doing eight 7.5km walks in solidarity with those still on the path to diagnosis, which takes 7.5 years on average in the UK. You can support my fundraising by sponsoring me here. Research suggests that racial biases in medicine, where endometriosis is often considered a white woman’s disease, lead to even longer delays in treatment and diagnosis for Black women. There is a wealth of literature that logs the wrongful presumption that Black women’s tolerance for pain is higher than others. It takes all of us to address these inequalities in healthcare and beyond and I urge all readers to confront them.

  • New hope: I got a coil #Periodically 34

    New hope: I got a coil #Periodically 34

    See, I told you I wasn’t abandoning the #Periodically blogs for Pleasure Moans. I’m back here because despite the pill, the endometriosis diagnosis and pelvic physio my pain is still interrupting my daily life and even recently made me pass out while watching a performance of Henry IV Part One, so I desperately need a more long-term, semi-permanent solution, or at least an attempt at a solution, that doesn’t immediately involve more surgery. So, I’ve had a Mirena coil/IUS installed in my uterus.

    Image result for mirena coil gif

    I’ve spent a lot of time on the #Periodically blogs discussing my complicated feelings towards hormonal contraception – the broader culture of those discussions is actually the subject of my masters dissertation. Even though the process from second surgery to coil insertion was pretty quick (about three months), it was not a decision I took lightly. Yet my feelings remain much the same as when I wrote about going back on the pill, in that I am deliberately trying to mess with my cycle to improve my pain.

    Anyway. Before the surgery I was already coming around to the idea of having a Mirena coil fitted in the event that endometriosis was found. A Mirena coil is an intrauterine system (IUS) that sits at the bottom of the womb – it has two strings that pass through the cervix so you can check it is still in place. Mirena releases an artificial progesterone, Levonorgestrel, to thicken cervical mucus to slow sperm down, to (sometimes) stop ovulation and most importantly for me, it thins the lining of the womb. It lasts for five years. It’s used to help people with endometriosis because by thinning the lining of the womb, and potentially stopping periods altogether, it stops those patches of missed-placed endometrium-like tissue from building up and causing trouble. It’s not a cure, but the hope is that by stopping my periods for a few years then it might turn endo off for a little while too.

    This is a big deal for me. I’ve spoken in great detail about how, despite everything, I’m actually quite fond of periods, but I’ve weighed all the pros and cons and the Mirena coil still seemed like the best idea for now (plus let’s be honest, my body probably won’t actually do as it’s told and stop bleeding). My gynaecologist told me to expect six months of sporadic bleeding and pain, but a six month blip of increased pain for potentially four and a half years of relief seems like a reasonable (hmm) trade off. Both my gynae and my GP encouraged me to stay on the pill for the first two months of the coil to try and make the transition a bit smoother. I was pretty resistant to this idea, not wanting to make my skin or mood any worse by increasing my progesterone dosage, but after talking to people who did so successfully I’ve followed their advice.

    Once I made the decision, however, I had to acknowledge the fact that fitting it was not going to be easy. Ideally it would have been fitted while I was under for the laparoscopy in April, but because my surgeon was so convinced it wasn’t going to be endo he didn’t do the consent form for it. When I saw him for my post-op he thought it possible I might have to be put unconscious in order to fit it. I desperately wanted to avoid another general anaesthetic so soon after the last, but evidently a pelvic floor dysfunction that makes any kind of vaginal penetration incredibly painful and/or impossible, meant it was on the cards.

    The doctor in charge of IUS insertion at my local surgery was a new doctor to me, which made me a little wary but thankfully she was lovely. I explained my experience with painful (and frankly unsuccessful) pelvic examinations and sex and my motivations for getting a coil in the first place. She was super understanding and came up with an action plan: I would take some diazepam an hour before the insertion to try and relax my pelvic floor. If my body was still uncooperative she would not force the issue. I was to take the day off and have someone accompany me to and from the appointment.

    Well, as the beginning of this blog gives away, the coil was fitted but it was twice as complicated and a hell of a lot more painful that I expected it to be. The doctor decided to use an anaesthetic gel, but that didn’t seem to provide much relief. Both she and the nurse were really supportive throughout but honestly it was a little traumatic. Even though it all happened quickly, we had to try various different tactics, positions and speculums. I wish I could say it was fine and just a little uncomfortable but it was a 10/10 for pain, which felt something akin to my cervix being stapled. It seemed like I might vomit and/or pass out and so I was given some water and told to take my time. Thankfully this pain didn’t last long but it was immediately replaced by hot, heavy cramping. Excellent!

    A man clearly made up the post-coil insertion rules because while tampons were off the cards, sex was not, apparently. The doctor advised me to use condoms for a week, at which point I reminded her of what had just happened and why – sex is not on my radar at the moment.

    It’s been about 10 days since the insertion and the pain is still very intense. Weirdly, it’s mostly been awful period cramps all morning every morning, resulting in copious amounts of ibuprofen and co-codamol and many hot water bottles, but in the afternoon it settles and I’m more-or-less OK. The last few days have also involved some excruciating vaginal pain, so that’s new. I have hardly bled since, but I’m expecting that to hit when I come off the pill in a few weeks. As much as I’m hoping the transition period might be shorter than six months, I’m not holding my breath.

    I am excited though. Mostly at the prospect of long-term relief in the future but also at the possibility that coming off the pill might mean my acne improves. The hormones in the Mirena are localised to the pelvic area, meaning there’s a chance it won’t affect my skin in the same way a systemic approach like the pill does. I’m trying not to get my hopes up about this silver lining but honestly when I think about it I squeal with excitement.

    Since it was so painful I didn’t want to throw yet another horror story out into the world, but a few people have asked for details so there we go. I think the fact I had it fitted during a particularly lengthy flare-up was both a blessing and curse. Already being in pain meant I was motivated for relief and so I didn’t chicken out but it also means I haven’t had a break from pain in weeks which is exhausting and definitely messes with your head. Nevertheless, I’m trying to keep in mind something I wrote in my diary a few hours after it was inserted, especially as my birthday approaches. I wrote, ‘with the coil comes new hope. Hope that 24 will see me make up for time lost at 22 and 23’. It’s a bit Star Wars but still, I’ll drink to that.