Maybe I just need to accept that my phone really is listening in on my every conversation, and that by this point TikTok has actually stolen my data, but post-laparoscopy my For You Page has been filled to the brim with women attempting to reclaim their endometriosis symptoms, raise awareness, and take back control of their bodily autonomy. Upon viewing their videos ranging from; dancing to the list of symptoms they were told were ‘normal’ by their GP, what endometriosis pain ‘really looks like’, ‘what I eat in a day on an endo diet’, how their endo belly’ fluctuates throughout the day, and ‘post-op progress’, seeing myself and my own afflictions reflected in my phone screen made me wonder: why, in 2023, are women still having to raise awareness over a medical disease to doctors? Why, to paraphrase medical historian Jaipreet Virdi’s work on endometriosis awareness, is a chronic disease which, according to WHO affects 10% of women worldwide, and an estimated 1.5 million in the UK, still framed as a ‘women’s health issue’, lost to a sea of conflicting information, stigmatization, medical gaslighting, and unreasonable wait times. You may be familiar with the statistic that from the onset of symptoms, it can take around seven to eight years to finally get an endometriosis diagnosis, and certainly, with the difficulty this disease presents in its inability to be cured, relying on a mixture of hormonal treatments and presenting only through surgery (laparoscopic procedure) this can add to this lengthy process. But is that really all there is to it?
For endometriosis sufferers like myself and from the stories of female activists demanding for their pain to be recognised – no, validated – in the medical sphere, such as the BBC’s Naga Munchetty’s recent appeal at the House of Commons’ inquiry into the state of women’s reproductive health, the simple answer is no. To put it lightly, having not been blessed by the best parts of my parents’ genes medically, the juxtaposition between getting my kidney condition diagnosed versus my endometriosis journey has been frustratingly poor. Two weeks or so ago now, when I finally underwent a laparoscopy, (something that feels like every endometriosis sufferer’s dream – yes we actually want surgery!) the first thing I asked, rather groggily I might add, when I came around from the anesthetic was whether they found any signs of endometriosis. The debilitating period pain, the cramps, the migraines, the sleepless nights, the nausea and sickness, the on-and-off days of being bedridden and missing out on enjoying my youth, hormonal mood swings, acne, and that dreaded ‘endo belly’ I had complaining about since I was sixteen years old, all dismissed as just ‘normal’ period pain (is there anything really ‘normal’ about period pain?) all led to this moment, this need for validation. Crying tears of joy at the news and finding out that even though the amount found was thankfully small, endometriosis pain does not equate to quantity found, and being booked into a specialist clinic to learn how to manage this lifelong disease, (I’ll miss you gluten!) I once again couldn’t help but ask: why have the past six years of my life been wasted in pain when a simple key-hole surgery like this exists? Honestly, the relief and tears of joy at the realization that a few short weeks of recovery pain may result in at least a few years of experiencing a ‘normal’ cycle has been replaced by a deep-rooted anger and resentment. My final year of undergraduate study, my year abroad, my summers, my relationships, my spontaneous nights out, and the first semester of my Masters, all once-in-a-lifetime experiences, and essential to what it means to be in your twenties, replaced by lying in bed, clutching my stomach in pain with a hot water bottle and a cold flannel on my forehead to ease the migraines, have all been impacted by a disease which had been dismissed as just period pain. The sharp, stabbing pain in my pelvis forcing me to take time off both my studies and work was dismissed as maybe just pain from my coil or a dislodged coil was in fact all the endometriosis growths festering there.
There is something bittersweet seeing endometriosis becoming a trending topic on social media and in the news thanks to the work of research projects like that of The University of Edinburgh’s Centre for Reproductive Health, social media activism, and the Vagina Museum’s newly opened endometriosis exhibition. An area of research that, much like the disease itself, is chronically underfunded and under-researched, with just 2.1% of public spending on medical research dedicated towards women’s reproductive health, why is this disease not seen as a medical disease? Why is it up to women themselves, and committed medical specialists who are pleading with and campaigning GPs to believe women and recognise their pain? The sad reality for those with endometriosis is the impact on our daily lives is still not viewed as the issue, it is how it affects our reproductive system, and as Virdi stresses ‘our reproductive capability should not matter more than our pain’. As a young woman in my twenties still wishing to enjoy my life, of course, I worry about the impact that endometriosis has on my fertility and it pains me when family members or friends, or even people I hardly know, talk about ‘when’ I have children as though my reproductive system may not have already made that choice for me, but truthfully my main concern is how it affects me now. Is it really fair that I have to rely on social media or ‘women’s’ magazines to source information on how to manage this lifelong disease or how to prevent its return when as a kidney patient that information has been so easily accessible in the medical sphere? At times it has felt like reliving my dissertation, sourcing my own research, turning up to gynecology appointments armed and ready with a wealth of counter-arguments in fear of once again being dismissed. In the time of this fourth wave of feminism advocating for the empowerment of women, when will this disease be viewed as worthy of attention beyond the female sphere?