Updated: Oct 27
By guest contributor, Katie Wilson
The alarm bells started ringing on page 22.
I felt a strange, wrenching pain in my pelvis, which made me gasp out loud […] it was just period pain […] just period pain.
I wasn’t feeling much of a connection yet with Frances, the protagonist of Sally Rooney’s debut novel Conversations with Friends. We were cut from a different cloth – the influence of time, place, and just about everything else had moulded us into inherently differing versions of womanhood. We saw the world in reverse, and everything she would do and say, would provoke the opposite response in me. But this, I thought, felt familiar.
Rooney had struck a nerve; it was the ‘just’ that got to me. This simple and effective employment of linguistic skill triggered a tidal wave of memories that spanned a decade of dismissal, misdiagnosis, and debilitating pain. This is where Frances and I found our common ground. Frances’ ‘wrenching pain’ had, for many years, been my pain too, alongside the 176 million other women worldwide who suffer from endometriosis.
In my teenage years, ‘just period pain’, meant blackouts. I vividly remember lying sweat-drenched on the living room sofa with my mother’s hand in a vice grip as she told me to ‘breathe through it, pet, it’ll pass’. But it didn’t pass, and for the first time (of many times to come), my consciousness gave into the pain. When I came round, we called the doctor, who assured us it was ‘just period pain’ and offered us a prescription of the same high-strength painkillers we had already resorted to from the family medicine cabinet.
Unsurprisingly, I didn’t feel inclined to seek any further medical assistance after that. So, unlike Frances, I was never prescribed the contraceptive pill to manage my pain, though the rumours that it might help played a significant part in my decision to start taking Microgynon when I was just 15.
My experiences with artificially manipulating my hormones throughout my formative years are a tale for another time; but for now, let’s just say that it worked, the pain was manageable and at times, barely there.
Image Courtesy of Wix
Four years of comparable calm ensued, until my first year at university, when I decided to come off the pill (because it was surely that, and not the inordinate amount of pizza and wine I was devouring, that was making me gain weight). So, I came off it, and that’s when the trouble really started.
The copper coil was suggested to me as a quick and easy, hormone-free, ‘back in the cocktail bar next door in no time’ contraceptive solution. In reality, with little understanding of what was happening and no mention of painkillers, my body violently rejected the foreign object after the blinding pain of the initial insertion, and I was in an ambulance within half an hour. It took nine months for me to pluck up the courage to have it removed, only to find myself back in the Doctor’s office a year later with nasty cramps, inexplicable post-coital bleeding, and thoroughly fed up with my uterus.
Enter endometriosis - a condition where the cells which belong within the uterus start to grow elsewhere, venturing towards the ovaries and fallopian tubes. It can be excruciatingly painful, but a historical bias in favour of medical research investigating mainly the male (and not the female) population, as well as the statistically high dismissal and devaluation of women’s pain, means that we don’t know what causes it.
In light of this, it seemed that there was no way of knowing where in my personal journey it had first kicked in. Perhaps endometriosis had been behind those pre-teen pass-outs, held dormant by the influx of oestrogen I’d self-administered, or maybe it was a reaction to the coil, or it was potentially linked to fluctuations in stress, weight, or diet. It could have been started by, and contributed to, ‘any number of things’, an evasive phrase both Frances and I heard time and time again.
It was another four years and three doctors later before I was given a clear diagnosis. My new doctor (who was female – significant? Discuss…) drew me a picture and walked me through what was happening in my body. She also explained the implications this could have for my fertility and organised an urgent referral to a specialist, where I learned that the surgical treatment of freezing and cauterising the offending cells was not only risky but simply a band-aid solution – there was always a good chance the cells would grow back.
I was one of the lucky ones in the end. In the months before the surgery was scheduled, my symptoms had, for reasons unknown to myself or my gynaecologist, started to ease, and with time, they faded away completely.
Although my pain has, thankfully, gone for now, in the UK, endometriosis affects around 1.5 million women, which to contextualise, is a similar figure to the number of people who suffer from diabetes. However, a lack of research into and understanding of this condition, means that as well as not knowing its cause, we have no clear cure. It also means that on average, from the onset of symptoms, women suffer 8 years of misdiagnosis before their condition is properly recognised. Aside from the immense personal trauma this inevitably causes, which is further exacerbated by the very real risk of a reduction or loss of fertility, it also costs the UK economy £8.2 billion a year in treatment, sick leave and unemployment, and healthcare costs.
The statistics speak for themselves. But the stories I hear from my friends, colleagues, and the women around me from all walks of life, whose debilitating pain is passed over as an inevitability are what bring this maddening truth to life. Our suffering is, historically, a norm not worth exploring in a medical world which was built by men, for men.
That is not to say that the modern medical world is a space exclusively held by men, or that the persistence of patriarchal restrictions is a conscious decision being made by gatherings of world leaders who wear long cloaks, drink from a ceremonial cup and agree that women are just being silly. On the contrary, we now live in a world where women’s illness is increasingly investigated, listened to, and cured. But we have to acknowledge that there are still problems surrounding diagnosing female illness, and that these problems are subtly pervasive and highly damaging.
They exist in poorly informed medical procedures carried out with no anaesthetic, in a lack of training and research which filters down to well-intentioned misdiagnosis, and in our language, where we dismiss real, lived pain with a ‘just’. They exist in my tale, and Frances’, and that of so many others.
So, let’s talk about it. Let’s talk about the bleeding and cramping and PMS and menopause, and let’s reject the passivity and conformity and silence surrounding these topics which does nothing but trap women in a space where they are told to grin and bear it. Because being told it’s ‘just period pain’ is just not good enough.
Note: The term ‘woman' is used throughout this article in the broad (and arguably reductive) medical categorisation which applies to people whose primary sexual organs are their ovaries. This is in full recognition of the fact that not all women (in the more accurate sense of referring to those who identify as female) have ovaries or menstruate. The language used is, I feel, best placed to recount my personal experiences, and I am committed to continuing to educate myself in this area.
Note: the NHS have recently conducted a survey to help inform the government’s Women’s Health Strategy which ran from March to June 2021. The outcome of this survey, when released, will be available here.
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If you wish to explore this topic further, Tell Me A Tale recommends both the sources for this article and some suggested further reading:
Caroline Criado Perez, Invisible Women
Sally Rooney, Conversations With Friends