Category: Endometriosis

  • Timing (and science!) is everything

    Timing (and science!) is everything

    So a couple of months on from writing about the overwhelming sensations conjured by a team of researchers, doctors and midwives actually having a plan for investigating and hopefully treating my endometriosis, I still haven’t written about the plan itself. So in theory, that’s what this blog is about but as usual, we’ll see where else it goes. 

    I should start by saying that the timing of the plan is… complicated. 2021 has been a rough old year so far (seriously, I thought 2020 was bad) and by the time I got to my expedited appointment with the endo specialist, I had decided that if the appointment wasn’t a radical change of circumstance, then it was time for me to seriously consider returning to the UK. But, as you know, the appointment did present a radical turn of events. So when the midwife asked me, moments after the gynaecologist had presented *the plan*, ‘ and just to check, you are planning to stay in Belgium, right?’ I found myself saying yes. It seemed quite a simple answer at the time but in practice, it’s been a bit trickier. 

    The plan, then, is some serious investigative work before any more surgery. Music to my ears! My doctor was honest about the fact that ‘this does end in surgery’ but that by using as many resources as possible we can try to maximise the impact of the surgery by knowing exactly where I have endometriosis in advance. The first investigation is a type of internal ultrasound using ‘International Deep Endometriosis Analysis’ (IDEA). This special, and I am expecting painful, ultrasound is part of a clinical study. Basically, the scans and the interpretation of them will be compared with what is actually found inside me during surgery. The results of the wider study will inform if and how ultrasounds using this technique can offer a less invasive, non-surgical way of diagnosing endo. I’ve never signed an informed consent form quicker. 

    The second investigation is an MRI. For years, doctor friends have been telling me to get an MRI, even privately if I had to. The problem was, even if I found the funds for an MRI, at no point had I been under the care of a doctor who could interpret anything about endometriosis from an MRI. That’s all changed now, though. This MRI won’t be pleasant, like for the colonoscopy in March, it will involve a full bowel prep and during the scan I will be filled with various fluids via my anus and vagina. Can you think of a better way of spending your summer? Ah, yes that was the crux. Summer.

    It was, is, a completely manageable crux. Both scans happen to be at various points in the summer. Which would so not be even the slightest problem, if it wasn’t for the fact that we’re still in the middle of a pandemic and I haven’t seen my family or friends at home in the UK yet this year, and many of them for much, much longer than that. In line with Brussels’ summers, I had set my heart on spending July and August working from home and reuniting with family in the UK but with quarantine restrictions and the unfortunate timing of the scans, that idea has been greatly downsized and, at times, seemed impossible. Now that I’m closer to getting home, even if it’s just for a little while, I’m finding it easier to manage but the last months have been frustrating and painful, knowing that if I stopped seeking treatment for this stupid condition then not only could I spend the summer with my family but I could consider moving back to the UK. During the last few months, I have often felt like I am inflicting unnecessary emotional pain on myself and my loved ones all for a slim chance of treating endometriosis. 

    Side note: it has been suggested many times this year that I move home and start seeking treatment in the UK again. But not only have I tried that twice with, let’s face it, pretty poor results but it would mean starting the clock again at a far slower pace, and that’s not to mention the professional and financial consequences. If I’m going to run on curative time, fine, but I’m not going to do so indefinitely. 

    Anyway, this is a problem for Right Now Hilary, stuck in Belgium without her family, but I can only hope that Future Hilary will be grateful. Persevering with life in Belgium to stay on this doctor’s books continues to feel like the right decision but it’s been a harsh reminder that sometimes, the right decision doesn’t feel like a good decision. 

    Once I’ve had the scans I will then, in the autumn, meet my gynaecologist again and discuss what kind of surgery route to go down. There may be more options when it comes to it but the two options she put to me in April were: standard laparoscopy performed by a gynaecologist to excise endometriosis from the reproductive system; or a more intense, interdisciplinary laparoscopy performed by a gynaecologist, urologist and/or gastroenterologist to excise endometriosis from additional organs, like the bowel, bladder and appendix. It’s really exciting science, medicine and surgery! Scary too though, especially if COVID will continue to limit my support system – thank god for good friends in Brussels. As always, I am managing my expectations but I’m happy to even be a guinea pig. 

    Being a guinea pig also has some other benefits because it gives me an indication of when I might have surgery. This is because the clinical study design stipulates that the surgery takes place no more than a year after the IDEA ultrasound. Timing really is everything, at the moment. 

    The plan didn’t stop there though. There was great concern from my GP, GI, new gynaecologist (and me) about the persistence and increasing frequency of rectal bleeding. For whatever reason, primary or secondary, it seemed I was bleeding out my arse when my pelvic pain flared up or when I got stressed, even though we have managed to turn off all vaginal bleeding with a Mirena coil. Something I find quite ironic, as back in the days of incredibly heavy periods, I used to say, ‘christ, I’m bleeding out my arse!’ Ah, Past Hilary, if only you knew what was to come. 

    For this reason, I was encouraged to do exactly what I didn’t want to do and go on a low-dose combined hormonal contraceptive, despite already having a hormonal coil. The logic behind this is known as ‘ovariostase’ in Dutch and French (I’m not sure about English, ovariostasis, maybe?) Essentially, it’s to turn my ovaries off and stop them from producing hormones. High on *the plan,* I said yes and then cried about it for days and refused to take what is a very expensive brand of the pill for weeks. As you might have gathered, my mood was very low and I was also worried that if I went on the pill while I was already down, I might unfairly blame the pill and unnecessarily fuel my pill-scepticism further. Eventually, after even more rectal bleeding, I took the first pill. And I’ve taken it every day since.

    Honestly, I am not happy about it, nor am I happy with my new pill-induced boobs and the other usual side effects but I am taking it on the assurance of all my doctors that this is only a temporary measure to help me now. For the first time, no one is under the delusion that the pill is a permanent solution. The bleeding has lessened significantly and when I began to notice that I worried that, like my gynaecologist back in Essex, they might say, ‘well, there we go, job done.’ What’s actually happened is that it confirmed that there is a link between my hormones and/or endometriosis and the rectal bleeding. My instincts were right. Again. 

    So that’s the plan, COVID-permitting, and let me tell you, recent events since I wrote the first draft of this blog has really rubbed the weight of that condition in… What’s nice is that although these upcoming scans are going to be uncomfortable and probably painful, they shouldn’t require any decision making on my part yet. That’s a great comfort – there have been far too many grown up decisions to make lately. Bring on a summer of scans, being reunited with my dog and avoiding major life choices.

    This week the UK government will debate the National Borders Bill, which fails to protect vulnerable refugees and will even go on to treat them as criminals. If you’re a British citizen, the Refugee Council has prepared a template email to send to your MP, imploring them to speak out and up for refugees, learn more here.

  • Prospects of living with and without endometriosis

    Prospects of living with and without endometriosis

    Last month, one single doctor’s appointment had three very significant firsts. Two of these firsts, I knew were coming. I spent the days before the appointment trying to dissuade myself of its significance, knowing from past experiences that keeping my expectations low is a necessary assurance. It was impossible though, impossible to deny that this was the first time I was seeing an endometriosis specialist and the first time I was seeing a gynaecologist who wasn’t a man. 

    The third, surprise first, was that they, the doctor and midwives, made a plan for me. For the first time, the plan isn’t just ‘do x, if it doesn’t work then I can’t help you’. It’s a plan for investigation, treatment and pain management, there’s even a plan for supporting me while I wait for other parts of the plan to be put in motion. Parts of the plan were presented to me unprompted, word for word in the way I had written them on my wishlist before the appointment. It was quite overwhelming and has left me in a confused haze. I’ll write about the plan itself another time maybe but this blog will instead address how I am mediating my peace with chronic pain with a new prospect for relief. 

    During my masters, the first chapter of Alison Kafer’s Feminist, Queer, Crip (2013) was on the reading list for a class on body politics. The chapter, and eventually book, left a profound mark on me and I find myself unable to resist going back to it time and time again. Kafer describes the temporal qualities of queerness and disability, whether or not they overlap and how, or whether they have been the same thing all along. Straight time can be seen as a normative pathway, an expected route through life. Illness is an unavoidable obstacle, usually painted within a curative, diagnostic or prognostic timeline – how long have you been like this? When will you be better? How long until you make a full recovery? How is life different pre- or post-accident or illness? There is a ‘compulsory nostalgia for the lost able mind/body’ (42). In crip and queer time, deviations to the normative pathway are welcomed and celebrated. ‘Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds,’ (27) Kafer writes. 

    With chronic, hard-to-diagnose conditions like endometriosis, the spirit of crip time is helpful. It’s helpful because it allows you to stop constantly comparing your present experience with a past before you were unwell or a future when you are cured. It is liberating to accept that your timeline isn’t curative and is instead more crip in nature. With cure-all hope off your radar, energy can be spent on accessibility, accommodation and prosperity. Throughout the pandemic, disabled people and people with chronic pain or fatigue conditions have spoken about how much more accessible work, events and experiences have become thanks to a need for people to work from home en masse. I know I am not the only one that fears that the idea of going back to ‘normal’ (cough curative time cough) also means a return to struggling to fit my body into a normative schedule that never worked for me in the first place. 

    My own appreciation for crip time is part of the reason I recently decided to live on my own (that and the important fact I had the resources to do so for the first time). Living with other people, I found, applies a certain pressure to dealing with chronic illness, both in the fact you can’t help but compare the activities of your day with those immediately around you but that there is also a pressure to be less sick to make others more comfortable. Lara Parker writes about her decision to live on her own with endometriosis in Vagina Problems. She writes, ‘it somehow makes me feel worse when someone is there and forced to witness it all. As badly as I crave someone being there with me, telling me I can get through it, it also often feels easier to face it alone… I can’t tell them how to help me or what to do because there is nothing I can do’ (48). For me, living on my own hasn’t exactly been easy (mainly due to problems caused by the pandemic and poor plumbing) but in terms of allowing myself to be really sick, allowing myself to rest, allowing myself to enjoy feeling good when I do feel good – it’s a freedom I didn’t know I was missing.

    But, and here comes a big but, endometriosis is part of a family of chronic, incurable conditions that have historically been under-researched, underfunded and out of the spotlight due to the people they affect – in this case, it is women and people assigned female at birth. It is possible that with adequate research, time and funding endometriosis could become a treatable, curable, even preventable, condition. Did I just apply a curative timeline to the condition itself? I think so.

    So there I was, a year or so after beginning to accept that endometriosis was going to be an ever-present part of my life and finding ways to be happy and comfortable with that fact, sitting across from my new doctor, a professor working on radical and innovative new methods of diagnosis and treatment of endometriosis, listening to the first treatment plan I’ve ever been offered. Part of the plan involves being in a clinical study – my data, images of my insides, will contribute to finding better ways to diagnose endometriosis. 

    I’m not going to bullshit you, I am both thrilled and frustrated by the whole thing. I’m frustrated that it comes to this, frustrated that this all ends in even more surgery, frustrated that I am once again setting my watch to a curative clock, frustrated that despite finding ways to accommodate endometriosis into my life, I am still attracted to the idea of living without it. Thrilled that by following this plan someone else might not have to go through so many pointless, harmful procedures as me, thrilled to have a doctor who, for the first time, knows what she’s talking about, thrilled that I might be able to have a sex life again, that I might be able to run again. 

    There are limits to all of this. I am incredibly grateful and excited that this could result in a significant and long-term reduction in pain but I’m not sure I really believe it will happen. That is to say, although the new plan might put me back on a curative timeline, I’m taking it with a pinch of salt. A big one. Doctors have made me promises in the past but I try not to take them to heart anymore, some things just aren’t on the cards for me and that’s OK. In many ways, it’s the safest attitude I’ve ever had, interested and active in the plan, invested in its results but confident that if it fails, I’ll be more than fine. For now, I’m finding an unexpected comfort in the knowledge that while some recent pain days have been so awful that I feel like I would do anything to eradicate endometriosis from the universe, that I wouldn’t be who I am today if it hadn’t manifested in my body. Maybe all this is a way to queer crip time, by occupying crip and curative temporalities simultaneously. 

    Like many my thoughts recently have been with India as it faces a brutal wave of COVID-19 and with Palestinians threatened with yet more violence. If you’re an EU citizen, I urge you to sign the European Citizen’s Initiative ‘No Profit on Pandemic’ to urge the EU to make coronavirus vaccines a global public good. Donate to a number of important charities helping on the ground in India via this fundraiser set up by students at one of my alma maters here. For educational resources as well as ways to help Palestinians, I recommend this helpful carrd.

  • When will I learn? 

    When will I learn? 

    I spent much of the last blog complaining that one problem with endometriosis is that eyeing it up as a suspect for any new or re-emerging symptom is unhelpful because treatment = surgery and waiting times = incredibly long, especially at the moment. Shortly after I wrote that, the universe said ‘hold my beer.’ The pace has picked up. Significantly. That gynaecologist appointment I had scheduled for September, the one I’ve been on the waiting list for since last September? Well, that’s now been rescheduled for April. (April 2021 – I checked). Why the sudden change of plans? Because the colonoscopy revealed, as much as I don’t want to hear it, that actually, it is the endo.

    Let’s step back a second. I went into the colonoscopy highly stressed. I was already anxious about it, in part because in Belgium colonoscopies are performed under general anaesthetic as standard and I’m currently separated from my family by a pandemic and a new political border. This meant I had to turn to my wonderful friends in Brussels to chaperone me home from the procedure. But then of course, the day before the procedure everything that could have gone wrong went wrong. From the first set of laxatives making me pass out, to my neighbour’s radiator leaking into my flat and my dear friend and chaperone getting covid. It all culminated in one very strange and stressful afternoon of me sitting at my desk, trying to work, sipping laxatives, lining up another angelic friend to escort me home from hospital while two men smashed a hole through the ceiling. 

    By the time it came to the procedure, I was suddenly grateful I’d be under general anaesthetic, a chance to sleep – at last! A good thing about the stressful build-up was that I didn’t have time to dwell on the outcomes of the colonoscopy, although I will say I had rather cynically decided that it was yet another unnecessary and invasive procedure that would more than likely result in absolutely nothing. This was also along the same lines as the last thing the gastroenterologist said to me before I went under.

    When I came round, not only was I thrilled to find that my anus still felt relatively normal but I was greeted by a surprised and slightly confused gastroenterologist. She had found something after all – a lone ulcer in my colon. She said it was strange. If it were Crohn’s or Ulcerative Colitis, then there would be more than one ulcer. She said it could be that we’d found one of the two inflammatory bowel diseases very early on, but that it seemed unlikely. Either way, it was a serious answer to why I have been experiencing rectal bleeding. She handed me a letter to give to my GP, with some options to explore.

    It’s fair to say that I’ve been miserable company since then – it’s a good job I live on my own at the moment. My GP took the reins and has been brilliant, communicative and actively exploring scientific papers and new hypotheses with me. But the day after the procedure she rang me to inform me that whatever happens now, I cannot take ibuprofen. It’s hard to describe how significant this is without sounding completely OTT. For the last five years, pre and post diagnosis, through every treatment I’ve tried, ibuprofen has been the only reliable pain relief I have had that doesn’t send me to sleep, mess with my head, make me lactate (yes, really) and that actually reduces the pain enough for me to enjoy myself or concentrate for a few hours. To be told that the solutions to new and old problems are still unknown while having my main crutch taken away… it’s really tough. 

    Tough even more so because as much of my social bubble gets excited about the potential end of lockdown life in the UK, I’ve already been feeling nervous about a return to normality. Working from home has been much easier for pain management, the idea of working in the office without ibuprofen is terrifying because I know I can’t do it. Things in Belgium are very different from the UK though, and a return to ‘normality’ is further out of reach. My GP is taking my concerns about pain management seriously though and promises that we’ll have a new plan by the time office life, all-day weddings and adventures begin again.

    We (my GP and I – a team, at last! This is how it should be!) both did a lot of work to follow up on the colonoscopy. My doctor chased the biopsy results and asked them to test for endometriosis if they could. They weren’t able to unfortunately but they have, thankfully, ruled out Chron’s and colitis. This means with some certainty that the ulcer in my colon is caused by endometriosis: either a secondary cause in that the ulcer was caused by too much ibuprofen or a primary cause, meaning that it might not be an ulcer at all, but an endometriosis lesion. Both these theories are backed up by the fact the rectal bleeding tends to happen the day after an uptick in ‘period’ pain. My job was to let my new gynaecologist’s office know of the news and our concerns around it, hoping that it might lead to a bump up the appointment list. And it did! 

    This is good news because it’s a step forward, rather than just standing still as I’ve been for the last 18 months. However, it could mean that more surgery is on the horizon sooner than I expected and I do not relish that thought. 

    I’ve found this month so far, which is also Endometriosis Awareness Month, difficult and emotional. When I found out about the ulcer, I realised I’d been doing it again, telling myself that I’d imagined the symptoms. I understand why I’ve developed this behaviour but the come down from realising that something is wrong and that I did the right thing by asking for help is still quite a shock to the system. The day after the colonoscopy I joined the Vaginismus Network’s meeting. I always find these meetings moving but Sarah Rose McCann, whose own experience is not dissimilar to my own, spoke and had me sobbing. It was super cathartic and her talk and the whole event was incredibly inspiring, but I was just overwhelmed with some kind of grief. I was really, really sad that so many of us are still in so much pain, still searching for answers, still not being taken seriously, and now, it seems, I’m not even taking myself seriously. I hope my blog is part of the collective action that will raise awareness of and soon see the back of so much suffering. 

    The British government is running a consultation on the future women’s health strategy for England. Like many, I’m deeply sceptical and am still waiting to see policy changes and, more importantly, improved health outcomes. Yet if we don’t complete the consultation then our voices will go unheard. So I will be completing the consultation and I hope you will too. It’s also important as many voices as possible are represented in the consultation, and if it’s just a bunch straight, white women like myself taking part then it will be about as useful as a chocolate teapot. So share it with all the womxn you know, let’s give the government more than they bargained for and demand change.