I’m kneeling on the hard, cold tiles of my bathroom floor retching into the toilet bowl, and I’ve been here for some time. The colour has drained from my skin and I’m clammy and delirious from a pain so intense, it is simply indescribable. Something is squeezing me from the inside so ferociously that I can barely catch my breath. All I can do is retch, unproductively, and writhe. “This must be what labour feels like,” I think, in a surreal, out-of-body way.
Ten years on, and one difficult childbirth later, I can confirm with some authority that this unrelenting, all-consuming pain was so much worse than giving birth. The bathroom floor episode was my first major inkling that something wasn’t right in my body. It was so frightening that I couldn’t dismiss it (even if A&E staff told me there was nothing wrong when I dragged myself there, and a GP explained it away as probably just a stomach bug). In reality, I had always been in pain to some degree. I had always bled through my PE shorts at school, swelled two dress sizes during my period – didn’t everyone? But even when my symptoms were at their worst, no one mentioned endometriosis.
About one in 10 women are thought to be affected by the disease, which causes cells similar to the lining of the uterus to grow in the wrong places: the bladder, bowel, ovaries. This fibrous webbing invades the pelvic cavity, burrowing into flesh like knotweed. For decades, endometriosis was written off as the “working women’s” disease – painful periods that would go away if you just got pregnant. Today, we know better.
And yet, while there is better understanding of the condition, and promising new research, there have been no new endometriosis treatments made available to patients for 40 years. After three years of blissful remission while I was pregnant and then breastfeeding my daughter, the pain returned, and I was back on the same carousel of medical interventions.
“What can we do about it?” I ask my doctor at the London hospital where I have been a patient for the past seven years. It’s an endometriosis centre of excellence – one of only 52 in the country providing the very best, joined-up care for treating the disease. She reels off the options: hormonal contraceptives, stronger painkillers, another pregnancy, all of which I’ve already tried. “Another surgery?” I ask – it would be my fourth. She’s not sure I would benefit and I’m not yet desperate enough to beg for it. Surgery is not, after all, without complications. My second left me with nerve damage to my pelvis.
Despite endometriosis now being written in big bold letters across my medical record, despite access to the very best care in the country, despite my own expansive knowledge of the condition – a byproduct of decades of self-advocacy – maddeningly it still feels like there just isn’t very much that anyone can do about it.
In 2015, a front-page spread in this newspaper revealing the “hidden suffering of millions” felt like a watershed moment in public awareness. I cried when I saw it on the newsstands, a year after being diagnosed. An update to the National Institute for Health and Care Excellence guidelines in 2017, telling GPs to take women’s pain seriously and to suspect endometriosis in those with chronic pelvic pain, moved the dial further. Huge public health investments in Australia set the global agenda for what ambitious, progressive women’s healthcare initiatives could and should look like. Their government has committed A$87.19m (£45m) since 2018 to research, raising awareness and the creation of specialised, multidisciplinary clinics as part of an action plan to get a handle on the disease.
And it is in everyone’s interests to take this disease seriously. About half of patients say their ability to work has been affected. Endometriosis costs the UK economy upwards of £8bn a year. And that’s not to mention its grave impact on patients’ mental health and personal fulfilment. In the UK, the minister for women’s health strategy, Maria Caulfield, announced last year a new project with the Office for National Statistics to investigate the impact of endometriosis on women in work. Something that would have been unheard of 10 years ago when the word “endometriosis” was often met with a blank stare.
At the same time, researchers continue to stack building blocks on a growing understanding of its pathology. As the expert Dr Andrew Horne told my colleague Gabrielle Jackson: “There’s an excitement at the moment.” Last year, the largest ever study on the genetics of endometriosis found links to 11 other pain conditions as well as other inflammatory conditions. Japanese researchers made their own breakthrough: they identified a type of bacteria that may be contributing to the growth of endometriosis via inflammation. All of these advances open the door to potentially life-changing new treatments. Endometriosis is finally, mercifully, shedding its “painful periods” misnomer and is starting to be considered as the complicated, multisystem “whole-body disease” it truly is.
Why do breakthroughs in healthcare take so long to trickle down to the people living with these conditions? Probably for all sorts of good reasons. Gold-standard research takes time. But there’s a frustration as a patient in knowing there could be a solution to your suffering just around the corner, except you probably won’t get there in time to benefit. Still, progress is measured in inches, not miles. I’ll try to remember that next time I’m in A&E.
Lucy Pasha-Robinson is an assistant editor on Guardian Opinion
