Tag: Personal Blog

  • 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.

  • The fun part? | Pleasure Moans #1

    The fun part? | Pleasure Moans #1

    1. Try not to intellectualise your bodily experiences (much too late for that)
    2. If you start dating again, you’re likely to unconsciously pick someone with erectile dysfunction (can I unknow this?)
    3. When you’re ready, try penetration but on your own (oh shit, here we go)

    Those are the three nuggets of wisdom my sex therapist gave me when we finished our sessions together in the autumn. She made it clear to me that she expected to see me again, or that I would see another psychosexual counsellor at some point in the near future. I was being discharged a) because my sister’s Danish health insurance had dried up and b) because we’d hit something of a brick wall in terms of progress. My generalised pelvic pain had improved and I was beginning to handle the upsetting side effects of the pill, the only thing left to test was the penetrability of my vagina. The fun part, right?

    I was in no rush to test this theory, partly because I was so encouraged by the way everything else had improved. Even in terms of vaginismus, we had come to the conclusion that any superficial, psychological pain and reaction I had was situational and secondary. We also agreed that I wasn’t ready to try penetration again. I was happy with the progress I’d made and while it was a really big deal to test the theory at some point, it was nice to live in the pain-free-ish, worry-free bliss for a little while. And it was worry-free. Until…

    A letter arrived announcing the date of my next appointment with my gynaecologist. I knew exactly what it meant. If I went into that appointment and said “yep, all good, pain’s reduced, periods are lighter, plus I’m handling the acne and mood swings” that my gynae would say “job done” and discharge me – rightly so. Honestly, I felt ready to be discharged. But in the back of my mind, the deadline of this appointment deeply worried me. I needed to test the theory that everything was fixed. I could foresee how upsetting it would be to be discharged and only then discover the horrible deep pain during sex was still there, meaning that if I needed more gynaecological care I’d have to start again, again, again.

    Despite the advice of my well-intentioned friends to ‘find a lad’ in order to test my internal mechanics, I knew exactly what to do, or at least, where to go. The Vaginismus Network has hosted a couple of its events at a Shoreditch sex shop called Sh! Women’s Erotic Emporium that has proven itself to be deeply knowledgable about unwanted pain during sex. Months of avoiding this big ominous question but one letter had me on a bus to a sex shop after class. Whatever it takes, I guess.

    Sh! hooked me up with a dilator set. These are specially designed vaginal trainers of different sizes, mostly used to treat vaginismus. While I wasn’t specifically treating vaginismus, I was advised that it was the best option for testing the water again, especially since I didn’t know if vaginismus was going to be part of the process or not.

    I was so sure it was going to be alright, because (have I said it enough?) everything else had genuinely improved. So I tried the smaller two. No pain, no vaginismus. I stopped there for a week or so, but this really bolstered me. I had reached the dream articulated by Fran Bushe in Ad Libido, I had fixed sex. 

    And then I tried the third one.

    Pain. Pain, pain, pain. Deep, cramping, breathtaking pain. Shortly and sharply followed by a different pain and resistance: vaginismus.

    What’s worse, the deep pain didn’t go away. It was like I had just turned my pain back on again, all of it, like a switch. Two days later I vomited up my breakfast because of pain, something that hadn’t happened since I started the pill. And I hadn’t even tried the largest one yet.

    Safe to say, I did. And it was agony and pretty upsetting. Not just for that moment but also because it was quite #triggering in ways I did not expect. I must have tried them for two, maybe three minutes. Not long at all. It just made me feel deeply disturbed, uncomfortable and worried by the fact I have had sex with that pain in the past.

    As a bonus stroke of discomfort, I currently live with my parents. They were pretty aware of my situation and how much it had improved. So when I was suddenly in pain again I was really unsure how to mention, “oh I’ve been upstairs testing out my vag before I see the gynaecologist on Tuesday!” So I did the very rational thing of saying nothing, becoming a bit of a stroppy teenager and not being a very nice person to live with. Oops. Sorry, folks!

    There are lots of things I hate about pain, but up at the top of the list is the exhaustion that comes with it. Whether it’s due to the cause of the pain itself or just by the toll being in pain takes, it sucks. I’ve found the masters draining and challenging, so adding some extra stress, pain and fatigue meant that by the end of term I just felt like a blob of matter floating around. Most of my diary entries from November and December start with “I am so tired,” “I’m fucking exhausted” “bloody exhausted” “you’d think I’d be used to exhaustion by now…” or various uncreative phrases of a similar ilk. I really thought it was just university, but my workload this semester is much bigger and yet I have had so much more energy and I wonder if it has a lot to do with my return to the regular use of painkillers and the fact I’ve stopped using the dilators for now.

    I can’t tell you how much I’ve hesitated over writing this blog. At the LSE Gender Department there is a lot of talk of so-called Imposter Syndrome. I’ve certainly felt it there, but I’ve felt it in this respect too – how can I spend so much time writing about sex but feel uncomfortable discussing solo vaginal training? And yet I didn’t want to force myself to write about it. If I felt there was a new line being crossed then I was going to cross it slowly and thoughtfully. But I did want to cross it eventually. The rediscovery of this pain has opened up a whole load of new questions, like was my pain ever hormonal? Did the pill actually fix something or did my pain just improve because more time had passed since the last time I had penetrative sex? The other feeling of imposter syndrome came from the fact I had restarted the pain myself. Should I devalue this pain because I had unknowingly but voluntarily made it worse? These questions haven’t gone away and I think this part of the story is crucial if I’m going to tell the next part. And though it does continue on from the #Periodically blogs, which aren’t going anywhere, I’m going to do so under a new banner: Pleasure Moans. 

    This blog is already way too long so I’m going to end it here. It’s obviously not the end of this (never-ending) story. I didn’t want this post to be quite so depressing but it is what it is. I promise the second half of this ‘episode’ is more constructive and angry and funny. I’ll try to write it soon, rather than leaving it another four months, but I’m making no promises. Thank you as always for your support, kind words and patience!