Author: Hilary Webb

  • 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. 

  • Review: So Hormonal

    Review: So Hormonal

    “A collection of personal essays detailing the various roles that hormones play in our daily lives” – SOLD! It was no surprise to those who know me that as soon as I learnt that this book – So Hormonal, edited by Emily Horgan and Zachary Dickson – was coming into existence through a crowd-funding campaign, during the pandemic no less, that I had to have it (or at least pre-order and patiently wait for it). And for those that don’t know me, in addition to my fascination with hormones on this blog, I also wrote my masters thesis on the feminist value of the ongoing cultural backlash against hormonal contraception, where I started to theorise a little something called Hormonal Feminism. So in short: I was keen.

    All this to say, I’ve read a lot of personal writing on hormones, but this is the most comprehensive anthology on hormonal experiences that I have come across. So often ‘the hormonal experience’ is pinned down to either cis women’s (often negative) experiences of menstruation, contraception, pregnancy and menopause or trans* people’s experiences of puberty and hormone therapy. And there are, of course, so many meaningful and important stories under those umbrellas, many of which are featured in this collection, but So Hormonal takes things a step further. It is deeply refreshing to find stories about hormones from cis men, next to essays about hormonal joy, fertility, pain, neurodiversity, osteoporosis, Addison’s disease, PMDD and so much more. The book represents ‘the hormonal experience’ for what it really is: bodies in flux, also known as being human.

    So Hormonal strikes a great balance between the personal and the medical, the technical, which matters, as is expertly explained in Sonja Erikainen, Andrea Ford, Roslyn Malcolm and Lisa Raeder’s essay Telling Hormonal Stories. They write:

    Hormones are ‘made’ and ‘remade’ in both scientific and cultural stories. Indeed, scientific and cultural stories are constantly in conversation with each other.

    Sonja Erikainen, Andrea Ford, Roslyn Malcolm & Lisa Raeder

    I will always be curious about the gendering of hormones, individually and collectively, and the above quote perfectly sums up why it is vital all hormonal stories are told, so that ‘hormonal’ can cease to be a negative adjective associated solely with women, femaleness and adolescence, because nothing could be further from the truth.

    This book is for everyone – it’s only shortcoming in that regard potentially comes in terms of location, though it isn’t always clear. There might be stories where you relate to something directly. For example, in Sonali Misra’s essay ‘Ten Years in the Making: conversations with partners about polycystic ovary syndrome’, she writes:

    I’ve been forced to add an extra step in the dating timeline, a disclaimer of sorts, due to the PCOS.

    Sonali Misra

    Something I know oh too well, thanks to endometriosis and vaginismus. Again with Aifric Kyne’s essay ‘I’m wearing Docs, Michael: on thyroids, tallness, and teenage suffering’ I was blown away by how Kyne seemed to have perfectly described some of my feelings towards height, eating, control and ignoring my body. Yet still, if you find nothing you relate to personally, the book is full of stories that will move you in ways you cannot anticipate. Some of my favourite essays in the collection I can’t even begin to relate to. While I could honestly just list the contents page, some stand out, including: Tyler Christie’s ‘Getting Off the Back Foot with Male Fertility Health’, James Hudson’s ‘Wanna see my Party Trick? *Stops Taking Testosterone*’, ‘Rianna Walcott’s ‘Banana-Poultices: Black British Attitudes to Healthcare and Medication’.

    And then there is the political, burning its way through the book like a hot flush. Many of the essays were written during the COVID-19 pandemic, and it shows. Healthcare systems that have time and again failed in regards to hormonal care, have struggled to deliver the very basic care needed even more during 2020. Jo Ross-Barrett’s essay ‘A period piece: on PCOS, PMDD, and the NHS in 2020’ closes with a powerful call for the UK’s healthcare system to do better: “I wanted to share my story so that people could see the human impact of intersectional feminist failings within the NHS. The NHS needs to offer timely and appropriate person-centred care that focusses on the individual in a holistic manner”. And then in the piece ‘Roaccutane Tubes: On navigating puberty hormones and bodily changes in the wake of sexual abuse’, Madeleine Dunne boldly writes:

    Until a point in time where healthcare providers and medical science are prepared to actually see female bodies, trans bodies, and Black bodies as being valid, to listen to the voices coming from those bodies, and to hear, act on, and validate those experiences, I worry that we are trapped in a cycle of gatekeeping, dismissal, misdiagnoses, inappropriate treatments, and loss of lives.

    Madeleine Dunne

    The quote speaks for itself, as does the entire book, and I recommend you read it.

    So Hormonal is published by the independent publisher Monstrous Regiment, based in Edinburgh, you can buy the book directly from them here.

    While I have you, I’ll take the chance to implore you to support the #ButNotMaternity campaign, which is lobbying for change in regards to the hypocritical and sexist measures than remain in place for people giving birth in the UK during the COVID-19 pandemic, measures that are leading to traumatic birth experiences. You can learn more about the campaign here and sign a related petition here. I’d also like to draw your attention to this article about a U.S. study where black babies were found to be more likely to survive when cared for by black doctors, demonstrating just how much work is still to be done in rallying against conscious and unconscious biases in medicine.

  • ‘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.