Tag: personal experience

  • Reading Vagina Problems by Lara Parker

    Reading Vagina Problems by Lara Parker

    I love non-fiction – so much so that this blog is probably poorly named. Yet the book I’m going to write about in this blog was pretty difficult to read. It had nothing to do with the writing and a lot to do with the fact that it crossed the line from reading non-fiction to broaden my worldview to reading about my own reality. So while this is a blog about reading Lara Parker’s Vagina Problems: Endometriosis, painful sex and other taboo topics, it is not a review – the subject matter is far too close to home for me to be able to give an ounce of objectivity. 

    Vagina Problems was difficult to read because it made me think about things that I spent the best part of the last year trying not to think about. I’m not sure if it’s the Mirena coil or a perk of COVID-19 restrictions, but my symptoms have become increasingly unpredictable leading to multiple weeks of relative relief that I affectionately call ‘hormone holidays’. These weeks are by no means pain free but the pain is manageable, I can hike and concentrate and think about something other than pain. During these weeks, I again start to wonder if I no longer need to seek treatment for endometriosis, maybe it wasn’t ever that bad in the first place, maybe further intervention isn’t necessary. But Vagina Problems reminded me how much I continue to adapt my life around my own vagina problems. And how while it’s hard to remember pain after the fact, the moment it returns, it is totally life-disrupting. Every time I learn about an external factor that worsens my pain, like sex, running and now stress, I’ve been in the habit of removing that thing from my life. Unfortunately, removing stress isn’t an option and I’m sick of stripping away the good triggers. While I have come to terms with the fact that there probably isn’t a long-term solution to be found at present, it is still worth pursuing one, especially while I have the energy during these ‘holidays’. 

    “Hearing that voice inside my head that says, ‘You probably wouldn’t be in pain if you didn’t eat that cookie,’ and telling it to shut the fuck up. Because the truth is, I’d still be in pain. But I’d be in pain without experiencing the pleasure of eating a cookie. And that’s not the kind of life I want to have.”

    Lara Parker, Vagina Problems – p. 40

    Sometimes when I talk about the last year in Brussels, I frame the story as though endometriosis, vaginismus and pelvic floor dysfunction were the last of my worries, with Brexit, chickenpox and a sodding pandemic trumping the chronic problems. But as I anticipate moving house and watch a new housemate as she discovers the city, I realise that my pain is embedded in my experience of Brussels, my work and my house. “This is where I work,” I said as the metro pulled into the platform, “and that’s where I fainted a year ago… and that’s where I vomited once I came round.” Asked why I fainted, I shrugged and said “pain”. Every time I use my work toilets, I’m reminded of how many times I’ve been sick in them, how it’s one of the first places I experienced rectal bleeding, how often I found blood in that small room and was never entirely sure where it was coming from or why. And then there’s the house. That’s where I sat every Friday evening when I came home from work ill, just in time for the weekend. We used to laugh at it, that I was always unwell the moment the weekend started. It took a lockdown for me to piece together that my body starts to send me red flags to rest on Thursdays and that when I ignore them, something breaks the moment I relax. If this has been the good year for my symptoms, then maybe my gauge for goodness is a bit out of kilter. 

    “I start downplaying what’s going on, or backtracking on what I was trying to reveal … I feel the need to make others comfortable with a situation that I’m definitely not comfortable with.”

    Lara Parker, Vagina Problems – p. 131

    Also etched on this house are my failed attempts at dating again for the first time since my first laparoscopy several years ago. You can take Parker’s chapter on dating with endometriosis (titled ‘Hi, my vagina hurts, wanna date?’) and just staple it to my forehead so that people can read my thoughts. Perhaps it’s because we’re both white and date men, but it seems as though I’ve been on a very similar journey to Parker regarding pain, sex and communication. Like me, Parker’s pain during sex is not just limited to penetration or insertion, “just getting aroused can cause a shooting pain from my pelvic area throughout my entire body… it’s not exactly an aphrodisiac,” and like Parker, I’ve spent years fretting over when is a good time to break that news to a potential partner. I recently came to the same sucky conclusion as her: “I don’t think there’s ever going to feel like the right time because it will always feel like boiling-hot water burning your tongue after you spit it out”. And when that communication breaks down, or just doesn’t happen, sometimes it backfires and the other person comes across very, very badly. I’ve tried explaining this to friends and never found the words, but now I have Parker’s:

     “Maybe he was scared! Maybe I wasn’t communicating what the fuck was happening and not providing an opening for a conversation about it. He was confused, I am sure. And for that, I give him 12 percent of my sympathy. Because guess what? As confused as he might have been, so was I. And I was the one dealing with the actual fucking pain.”

    Lara Parker, Vagina Problems – p. 119

    When I think about my future in terms of treatment and any potential coupledom, I’m surprised to find them interlinked, after fighting against doctors’ assumptions of such a link for years. But they’re not linked in the way people always assumed. Let’s say I see this top doctor in Belgium and she is as skilled as the world says she is and she greatly improves my symptoms to the point that I can once again have an active and social personal life and have or even enjoy penetrative sex again? What if I entered a relationship after that point and my partner didn’t know what it took to get there – what if there even came a point where it was taken for granted because they didn’t know what a huge deal it was for me? Then on the other side, what if I see this doctor, and like the others that came before her, she can’t do anything for me? It’s hard to imagine having a functional relationship with someone who didn’t witness that process and know first hand that I didn’t chose the result. Although maybe that attitude is rooted in living in a world where women are rarely believed on testimony alone. 

    I am certain that these aren’t good reasons to start a relationship, and they’re definitely not reasons to have more surgery, yet one intense weekend reading Vagina Problems had me actively using a dating app and on a waiting list for a new gynaecologist after months of dithering on both. I’m still not sure if either of those things are good but somewhere in there, there’s hope. 

    You can follow Lara Parker on Instagram and buy her book here. At the moment she’s raising awareness about U.S. endometriosis experts who have donated to Trump’s campaign. I join her in saying that they cannot advocate for people with endometriosis when they are supporting racist and sexist policymaking. Doing so is to work directly against the patients they claim to care for. I encourage my U.S. readers (that’s 37% of you!) to cast your vote if you haven’t already and to know that a vote for Trump is a vote against pretty much everything good in this world, including access to safe healthcare. Elsewhere, the all party parliamentary group (APPG) report on Endometriosis has just been published – read it here. 

  • ‘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.