The first time I heard the word spoken in relation to me was at a fortunetelling session in a Belfast student house around 1993. Somebody I knew was friends with somebody else who lived in the house and had arranged for the mystic to offer an evening of individual readings in their livingroom. Although livingroom was probably too grand a term for the venue: the student houses of Belfast at the time tended not to focus too heavily on the comfort of their inhabitants. Anyway, there we were, primed to hear about future exam success and likely spouses, carefree in a way students should be.
The medium or whatever she was had the look of a cardigan-wearing librarian rather than a holiday park Mystic Meg. She invited us in from the kitchen one by one, quickly creating a divide between those who knew their future and those who did not. By the time it got to me, the feedback wasn’t outstanding, so my expectations were not high.
She told me something about my family (correct), something about who I would marry (not quite correct in the end, but refunds don’t seem to be on the table for these things) and that I had endometriosis. Well, that was a bit of a rubbish curveball. Where was my lottery win? Or enormous career success? A hard-to-pronounce gynaecological condition was not exactly among my hopes for this lighthearted Tuesday evening endeavour. But it’s what I got and, as destiny would have it, she was correct.
I knew a little about endometriosis at the time because I shared a student house with other girls and this was still a period when printed monthly magazines were affordable and popular. Cosmopolitan and Company quite often did young women a service by educating them on women’s health between articles on bikinis and other matters unsuitable for mention in newspapers of the 1990s. I just hope TikTok and YouTube are performing the same service now.
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But that was about the extent of my engagement with the issue. I vaguely knew what it was and a fortune-teller had told me I had it. This wasn’t really enough to deliver me to the door of my GP and certainly not something that preoccupied me greatly.
What I should have been doing – and what I would hope young women would do now – was linking the symptoms of endometriosis with my own life. It amazes me now that I did not think: chronic pelvic pain (check), fatigue (check), monthly tortures (check) – oh, maybe I should just see a doctor anyway, no need to mention Mystic Mairead or Sharon or whatever her name was. But I was a student, I was happy and having fun and life was fine, so I didn’t.
The fatigue thing though. This should have been the biggest warning sign. I have always been known for being “a bit crap” when it comes to energy levels. Never quite able to keep going with physical activities as long as others, never managing too many social engagements in one week. Friends have always joked about it, and I accepted it – it was just how I was. And I still managed a full life in Belfast, with my university career bringing me to two other countries and throwing me out into an internship in Paris that was so coveted it felt like some sort of treasure. Another followed in London, which was at that stage still semi-affordable and held so much promise.
But then I got sick, properly. Until then, the symptoms I had yet to add together to equal a whole bunting string of gynaecological red flags had been bearable. I was young and healthy and did not let them interfere with my life beyond the aforementioned crapness. But bang, a nasty infection hit, I flirted with sepsis, and lost six months of my life to recovery. Au revoir, London, bonjour the sofa in my rural family home and an unwelcome dawning that stuff happening inside my body, specifically my abdomen, could hold a negative power over whatever plan I had for my life at age 23. The fact that this was a shock is also stunning to me now, but that is the way of youth.
One medical conversation stood out when I was being released from the care of the consultant who had overseen my treatment a while later. He spoke quickly about the infection that had caused my hospital stay, adding a seconds-long sentence that included the following three terms: endometriosis, infertility and IVF. His tone wasn’t flippant, but it wasn’t portentous either, and the mild warning it contained landed somewhere in between in my head. At the time, this was not an urgent or live issue for me so the conversation went into a virtual “no immediate action needed’ file and I moved on, despite my second encounter with that “e” word.
Of course the crapness continued when I got better, this time with a side of worry every time I felt shaky or unwell. Check for fever, check for pain that could be an infection, check for more-than-usual fragility – the number of times I have performed these acts of self-monitoring since runs into the thousands. As many women will know, this kind of behaviour inevitably takes up negative space in the psyche and can become exhausting, even when, objectively, it is unjustified. That’s the thing though – objectivity and women’s gynaecological or reproductive health are uneasy bedfellows. It’s hard to apply objectivity to what somebody else is experiencing, or might worry about experiencing.
Women’s health runs along a spectrum, starting where somebody suffers no negative issues beyond a monthly inconvenience (I don’t know any of these women) and ending with those for whom being unwell is the dominant force in their lives. The long path between these two points, and the many, many conditions that lie in between, can act as a barrier to forming a coherent advocatory voice for the issue as a whole. It’s almost as if the suffering comes in too many forms to be whittled down into an impactful cause. Things have improved in recent years, with initiatives such as the multidisciplinary endometriosis hubs established by Stephen Donnelly when he was minister for health. But, as always, there is still a huge amount of joined-up work to be done, and the next government must not be allowed to drop the ball – these are real women and this is real, regular distress. There is no point in having surgeons who can help without providing them with sufficient theatre time, for example.
As for my own place on the spectrum, I’d say I land somewhere in the middle, veering towards the higher end at certain stages. In a typical month, this has meant ticking along, suffering symptoms, trying to address symptoms and curtailing my life when this doesn’t quite work. Many women readers will know exactly what I mean: the days where you drag yourself through life, through work duties or caring for your family. You can explain more easily at home than at work, even in decent workplaces: “Sorry, I feel crap again. I know I said this last week too, but this is a fresh bout of crapness.” And ultimately the work still needs to be done, so you do it. This can involve steeling yourself to find the energy to empty the dishwasher or to make it to the end of the day in the office.
It won’t be every day – and some months, you’ll get through it quite well – but then there will be the bad ones too. You will find yourself consulting apps to work out when you might be most likely to feel unwell so that you can book your weekend away at a different time, or arrange to meet a friend on a different night. There will also be the lovely events you’ll miss, and ones you just can’t enjoy: the birthday parties you must leave early, or the reunions you must cancel. It’s all part of normal life. And because you look fine (only my eagle-eyed mother was ever able to spot the symptoms in my grey face), you function.
For some with the most punishing kind of endometriosis, infertility must also be borne within the confines of this “normal” life. For me, despite that one-sentence warning of my doctor, this was very happily and fortunately not the case – a fact for which I am endlessly grateful. But for those less lucky, the emotional and physical burden must feel back-breaking.
Compared with these women, my management of this condition has been a dream – a series of micro inconveniences and micro responses. But the macro reactions are harder to measure. It’s only when you look back over years of calibration of energy levels and trying to keep your head above water at home and at work that you fully appreciate the impact this thing can have. You might work part-time and curb your ambition because you know you simply don’t have the energy to do more while managing a growing family. You might have an overall aversion to risk because you know how quickly your physical health can fade. And, at your lowest moments, you might just feel a bit sad about the limitations these things can create.
I remember once eavesdropping on a conversation between two women where they were discussing a third. Apparently, this third woman used to spend the first day of her period every month in bed. This, in the early 1980s, was deemed so utterly outrageous as to prompt scoffing from the first two women. Imagine, they said, just imagine! I find it useful now to reflect on what it most likely meant – the third woman was so debilitated by her own body every month that staying in bed was the only thing she could manage, while the other two had no understanding of such debilitation and therefore had no framework that allowed for the empathy she surely deserved. I still feel sorry for this third woman.
We have, hopefully, progressed in the meantime, and women who suffer from chronic ill health because of gynaecological issues should be able to access a shade more understanding. I got this myself recently when, pursuing fresh relief from my continuing and worsening symptoms, I found a medical team who completely appreciated the nature of life with endometriosis and went out of their way to express this.
The one unanticipated impact of this medical intervention has been the validation it has brought. Despite fully knowing that what I was feeling was not within the realms of normal, I had somehow never quite expected others to accept this as a big problem. Even though I was in a hospital setting seeking treatment from professionals, it had never felt like something substantial enough to merit official sympathy or empathy. I know this doesn’t sound like logic, but perspective is not always available when you’re just plodding through.
Looking back to that fortune-teller decades ago, part of me wishes I had taken her seriously and gone to my doctor with the endometriosis theory. But then again, imagine sitting down in front of your GP with a tale of diagnosis delivered through tarot cards. A better option would have been an earlier awareness of not always needing to deal with my issues alone, nor accepting them. Providing more oxygen to conversations about women’s health at that stage – where GPs might have talked openly about endometriosis instead of leaving it to psychics – could have made a real difference to my life. Hopefully, the 19-year-olds of today will be less likely to stay quiet and their doctors will encourage them to speak.
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