One in 10 women of reproductive age in the UK lives with endometriosis, a painful condition that causes cells similar to those lining the womb to begin growing in other areas of the body. On average, a diagnosis takes an estimated eight years, resulting in an even greater toll on the sufferer’s mental health, wellbeing, personal relationships and career. During endometriosis awareness month, three women candidly share their own experiences of living with the disease with British Vogue.
If there is such a thing as an endometriosis diagnosis lottery, then Emma Roche hit the jackpot. It’s just one year since Roche, a PhD researcher in her twenties, began experiencing painful symptoms akin to a bomb going off in her pelvis, and following an endometriosis diagnosis at the beginning of 2021, she’s now preparing to begin hormone therapy. This is despite the fact that the average wait time for a definitive diagnosis in the UK is eight years – and up to 11 years in other countries – making her case a rarity.
“My symptoms were not taken seriously at the start,” Roche tells British Vogue, describing how she was initially treated with antibiotics for a suspected kidney infection. “I had a pressure in my pelvis and just a hot, painful burning sensation all day on my lower back.” Another GP put her pain down to stress, suggesting it was phantom. Roche’s experience is not unusual, it is indicative of one of the most harmful medical issues facing women today: that female pain is often not believed, or debilitating pain dismissed as “normal”.
“Maybe it is all in my head,” Roche says, adding that at no point was she offered a basic pelvic exam, blood test or ultrasound, all of which can provide clues as to whether someone has endometriosis. The only conclusive way to diagnose the condition is by a laparoscopy: an invasive operation under general anaesthetic in which a camera is inserted into the pelvis via a small cut near the navel, to look for endometrial tissues outside the uterus.
New initiatives to support funding and access to treatment are also on the rise. The European Union has granted €6 million towards endometriosis research. The Out of Country Endometriosis Excision Surgery Fund aims to provide people with a bursary of up to £11,000 to access treatment abroad from specialised surgeons. Elsewhere, BodyForm has launched a pain dictionary – a dedicated space to help articulate the complex language of endometriosis pain – to help patients express their pain. The ultimate goal is to improve diagnostic methods and to develop treatments so that endometriosis can be prevented and millions of lives – like those of Roche, Ayton and Halton – will no longer be compromised by this disease.