Tag: Feature

  • 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. 

  • ‘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. 

  • Brexit and my body

    Brexit and my body

    Like many, life has been a complete stress fest for reasons mostly out of my control in the last few months so I thought the enforced downtime of my Christmas quarantine would be a good chance to write a blog or two. Problem is, I’ve just been sitting in my parents’ loft working and then listening to Brexit unravel, again. This perhaps explains where the following blog came from.

    When is a good time to emigrate? The answer probably isn’t weeks into a painful treatment for endometriosis, a month before the UK is scheduled to leave the EU just as the world is about to enter a pandemic. You can guess what I did. In my defence, I couldn’t have known about the pandemic. 

    I mentioned a few blogs back that I moved to Belgium for a job. What I didn’t mention was that when I interviewed for the job I had one hot water bottle tied around my waist, another shoved in between my legs and during the meeting I squeezed my stressball in half. I was in a hell of a lot of pain and I was interviewing in the full knowledge that it was perfectly possible, likely even, that if I got the job then my body would not be able to hack a 40 hour work week, especially with such a big change of scenery. I tried it anyway, to varying degrees of success. There are weeks when I feel like I should never have doubted myself or my body, and then there are weeks when I regret not raising a white flag. I am still not very good at listening to my body when it tells me it’s struggling, except and always in hindsight. 

    There are plenty of things that haven’t helped me manage endometriosis over the last 18 months, my own foolishness and the pandemic included, but would you like to know one thing that has consistently complicated things? The British Government and its insistence on dicking about with Brexit. 

    When I first moved to Brussels I was an intern, which unfortunately leaves you in a unique kind of limbo in Belgium. When I say limbo, I mean there are very few grounds on which you can access health insurance like the rest of the working population. I learnt this, unfortunately, when I passed out a few weeks into my Brussels adventure. I was able to access great healthcare, but it was out of pocket. Now the out of pocket prices aren’t astronomical (relative to countries like the U.S, not as much to the free-at-the-point-of-use NHS) but even on a decent intern’s salary and with my body’s record, I knew paying out of pocket wasn’t sustainable. 

    Shortly before I moved, I renewed my European Health Insurance Card (EHIC). I did it almost as a joke, but when another Brexit day came and went without anything happening, I decided to see if my status as an EU citizen had any last minute perks. It did, my EHIC gave me health insurance as if I were a regular employee in Belgium, not because I was an intern, not because of the NHS, just because I was an EU citizen. Problem was, I had no idea at what point Brexit would turn off the coverage. The insurers in Belgium said they didn’t know yet, so I wrote to my (conservative, Boris-championning) MP in the UK, whose response was unsurprisingly useless.

    When your body has become an incredibly uncertain place to live and suddenly your healthcare is reliant on a precarious political situation, you begin to become quite scared of your body in new, very unnerving ways. This anxiety over if and when my health insurance might stop made my doomed mission of avoiding medical intervention that much easier because I relied on the fact that my health insurance was limited in ways I couldn’t fully know. Regardless, my European health insurance got me through the chickenpox and other unexpected gifts from 2020. Yet every time a doctor referred me for an outpatient treatment or investigation, a new gynaecologist or a colonoscopy, they recommended I wait until either the Brexit negotiations were clearer or until I had a job with health insurance.

    Fortunately, my employment situation became more secure and my health insurance should now be unaffected by the end of the Brexit transition period, though I can’t say the same for my right to live or work in Belgium. I am so lucky but I can’t help think of the Brits who will move to Brussels for internships, which are already out of reach to many since they have a reputation for being poorly paid, and how they are going to do so without any health insurance options, especially if there is no deal. At one point when I was trying to sort this whole mess out someone advised me, “just don’t get sick”, a deeply disturbing attitude that I regretfully expect a lot of interns to adopt in the coming months. What’s more, through my work I have had the chance to see the innovations that come from European funding, especially related to health. My skin crawls at the idea that British researchers and innovators won’t have access to these opportunities anymore. 

    So when my MP wrote to me in October 2019 that “the PM has secured a new deal which will allow us to avoid a No Deal Brexit and leave the EU with a deal … If you need any specific support relating to your condition, please do let me know,” not only was he apparently lying about the avoidance of a No Deal Brexit but he was ignorant of the fact that the specific support relating to my condition that I needed was for my government to create an environment where I could make the best decisions for my health based on my body’s needs, without factoring in Brexit negotiations. All I needed was the basic commitment from my government not to use human lives as political pawns. 

    My situation was nothing compared to the precarity Boris Johnson’s government consistently plunge lives into every day but I hope it’s yet another reminder that negotiating policy has real-life consequences before the (likely bad) policy is even made. Everyone keeps talking about the uncertain times we’re living through because of the coronavirus pandemic, which is undeniably true, but let’s not forget that through the Brexit negotiations, the British government has continually chosen to create more uncertainty, for reasons I can only attribute to delusions of grandeur. 

    I know a lot of people have news fatigue at the moment but we can’t let a bad Brexit slip through because of this, I recommend you give Femi Oluwole a follow for some hard truths. I’ll be writing to my MP again but maybe yours will be more helpful than mine?