Endometriosis science is finally breaking through – so why are treatments stuck in the past? | Lucy Pasha-Robinson
II’m kneeling on the hard, cold tiles of my bathroom floor, gagging into the toilet bowl, and I’ve been here for a while. The color has drained from my skin and I am clammy and delirious from a pain so intense it is simply indescribable. Something is squeezing me so hard from the inside that I can barely catch my breath. All I can do is gag and squirm unproductively. “This must be what childbirth feels like,” I think in a surreal, out-of-body way.
Ten years later, and one difficult birth later, I can confirm with some authority that this unrelenting, all-consuming pain was so much worse than childbirth. The episode on the bathroom floor was my first big suspicion that something was wrong in my body. It was so scary that I couldn’t shake it (even when the emergency room staff told me nothing was wrong when I dragged myself there, and a GP dismissed it as probably just a stomach flu). In reality, I had always been in pain to some degree. At school I always bled through my gym shorts and went up two dress sizes during my period – right? But even when my symptoms were at their worst, no one mentioned endometriosis.
It is believed that around one in 10 women suffer from the disease, which causes cells similar to the uterine lining to grow in the wrong places: the bladder, intestines and ovaries. This fibrous tissue penetrates the pelvic cavity and settles in the flesh like a knotweed. For decades, endometriosis was written off as a ‘working women’s disease’: painful periods that would disappear when you first became pregnant. Today we know better.
And yet, although there is a better understanding of the condition and promising new research, no new endometriosis treatments have been available to patients for forty years. After three years of blissful remission while 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 is an excellent endometriosis center – one of only 52 in the country offering the very best, collaborative care to treat the disease. She considers the options: hormonal contraceptives, stronger painkillers, another pregnancy, all of which I’ve already tried. “Another operation?” I ask – it would be my fourth. She’s not sure if it would benefit me, and I’m not desperate enough to beg for it yet. After all, surgery is not without complications. With my second I suffered nerve damage to my pelvis.
Despite endometriosis now appearing in big, bold letters in my medical record, despite access to the very best care in the country, despite my own extensive knowledge of the condition – a byproduct of decades of self-advocacy – it still feels maddeningly like there’s just not much anyone can do about it.
In 2015, a story on the front page of this newspaper, revealing the “hidden suffering of millions of people,” felt like a turning point in public consciousness. I cried when I saw it on the newsstand, a year after I was diagnosed. An update to the National Institute for Health and Care Excellence’s 2017 guidelines, which told GPs to take women’s pain seriously and suspect endometriosis in people with chronic pelvic pain, moved the dial further. Enormous investments in public health in Australia setting the global agenda for what ambitious, progressive women’s health initiatives could and should look like. Their government did that has committed A$87.19 million (£45 million) since 2018 for research, awareness raising and the establishment of specialist, multi-disciplinary clinics as part of an action plan to control the disease.
And it is in everyone’s interest to take this disease seriously. About half of the patients say their ability to work has been affected. Endometriosis costs the UK economy more than £8 billion a year. And we haven’t even mentioned its serious impact on patients’ mental health and personal development. In Britain, the Minister for Women’s Health Strategy, Maria Caulfield, announced a new project with the Office for National Statistics last year to investigate the impact of endometriosis on working women. Something that would have been unheard of a decade ago when the word “endometriosis” was often met with a blank stare.
At the same time, researchers continue to stack building blocks for a growing understanding of its pathology. As expert Dr. Andrew Horne told my colleague Gabrielle Jackson, “There is excitement right now.” Last year, the largest ever study into the genetics of endometriosis found links to 11 other pain conditions and other inflammatory conditions. Japanese researchers have made their own breakthrough: They have identified a type of bacteria that may contribute to the growth of endometriosis through inflammation. All these developments open the door to potentially life-changing new treatments. Endometriosis is finally, mercifully, shedding the misnomer of “painful periods” and beginning to be considered the complicated, multi-system disease that it truly is.
Why does it take so long for healthcare breakthroughs to reach the people living with these conditions? Probably for all kinds of good reasons. Gold standard research takes time. But as a patient, it’s frustrating to know that a solution to your suffering could be right around the corner, but you probably won’t get there in time to benefit from it. Yet progress is measured in inches, not kilometers. I’ll try to remember that the next time I’m in the emergency room.