Category: Endometriosis

  • ‘It’s probably just the endo!’

    ‘It’s probably just the endo!’

    Recently, my body has been treating me to some different symptoms than I’m used to. Some are blasts from the past, others are brand new. Both have left me feeling more acutely unwell. My GP is on maternity leave so while I navigate these new bodily (mal)functions, I’ve been getting to know a couple of new doctors, or rather they’ve been getting to know me, in alarming detail… 

    Meeting a new doctor always brings up some sore feelings for me and involves going through the motions of doubt even the most well-meaning doctors seem to have, especially, but not limited to, believing women’s testimonies of pain. Once I got the endometriosis diagnosis confirmed, I remember thinking that although it was bad news, at least now doctors would have to believe me. Yet the last three times I’ve told a doctor that I have endometriosis, it has been met with scepticism. ‘So why do you think you have endometriosis?’, ‘we can’t know that for certain without surgery,’ ‘and has that been confirmed by laparoscopy?’ are the responses I’ve received. Perhaps I’m paranoid and I’m as suspicious of them as they are of me, but it immediately makes me cringe, knowing that what they’re really asking is: ‘is that a self-diagnosis?’ It stings all the more after I deliberately made a point of never saying ‘I have endometriosis’ before a surgeon found it – hell, didn’t I call it dementors? Another side to this is the uncomfortable truth that actually, I did think it was endometriosis, I did self-diagnose and I was right, it just took three and a half years and two surgeries for a doctor to concur. 

    At one of these appointments the doctor wanted to perform a pelvic exam. I asked if there was a way I could do what needed to be done myself and when she said no, I explained my hesitation around pelvic exams, the associated pain and my pelvic floor dysfunction. Minutes later, when I’m crying in pain and she can’t find my cervix, the doctor looked up between my legs in panic and said,  ‘oh god, is it like this for you every time? I’ll try to be quick!’ She was visibly quite shocked and suddenly started asking more questions and taking me seriously. I just sat there thinking about how the examination didn’t need to be like that, if only you’d listened to, believed and processed what I said before it. Why else would I have said it? I would love to know the answer to this question because I reckon it’s steeped in unconscious biases. Doctor friends, enlighten me! Let’s fix this! 

    Back to the present day, I’ve still got eight months until my appointment with my new gynaecologist, the first endometriosis specialist I’ll have ever seen. I’m also a month away from a colonoscopy. After months of recurrent rectal bleeding I had a slightly more serious ‘episode’ (it was actually hours after the aforementioned pelvic exam). Apparently I should have taken myself to A&E, instead I went home, freaked out and went to sleep. I’m now in a sense of heightened anxiety about going to the loo, because if there is a repeat of this episode, then I’m under strict instructions to take myself straight to hospital. My GP went through the possible outcomes of the colonoscopy, many of which are a little scary, before ending rather perkily with the alternative outcome: ‘it’s probably just the endometriosis!’ 

    While I’m patiently waiting for this mystery to be solved or at least identified, of course my body decided to help me along by giving me a UTI followed by the familiar feeling of kidney pain, sending me to the out of hours doctor on a Saturday night with a suspected kidney infection. The doctor concluded it was either the beginning of a kidney infection or the end of a serious UTI and to keep an eye on it, and then, just as I was leaving the consultation room, she added, ‘it’s also probable it’s just the endo. It can cause a lot of pain, you know.’ 

    I’ve heard that logic twice in two weeks. ‘It’s probably just the endo!’ Is it supposed to reassure me? I don’t want it to be the endo. I don’t want to have to deal with the fact that endometriosis has taken over my bowels and urinary system as well as my sexual and reproductive organs, mostly because, in all likelihood, no one will know what to do with that information. At least we know how to treat kidney infections. Saying, ‘it’s probably just the endo,’ however true it might be, is not particularly helpful or likely to result in relief any time soon. 

    The doctor I will see later this year recently appeared on a Flemish documentary about endometriosis and I was very happy to hear her say that she works together with gastroenterologists and urologists, knowing that more than one expertise is needed to deal with endometriosis. This gives me a lot of hope in the case that these unexpected symptoms are ‘just the endo.’ I just hope my body can cool the drama until then. In the meantime, the colonoscopy will take place in French and my new gynaecologist is in Flanders, so I have some vocab to swot up on… 

    Next month is endometriosis awareness month! Endometriosis UK are running an #EndoTheStigma campaign and are running lots of great online events including this one on Endometriosis and Sex during COVID-19, get involved!   

    Also, did you hear? The Birthrights charity is convening a national inquiry into racial injustice in maternity care. This is a long time coming, follow its progress here. 

  • 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.