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.
“We’re not nearly where we should be for a disease that’s as prevalent as endometriosis,” says Lone Hummelshoj, executive director at the World Endometriosis Research Foundation (WERF) and co-founder of the Danish Endometriosis Society, of the UK’s efforts to diagnose and treat endometriosis. “It’s as prevalent as Crohn’s disease, diabetes and rheumatoid arthritis, yet we only see a fraction of the investment in research compared to those diseases,” Hummelshoj adds. Historically, medicine knows very little about conditions that mainly affect women, and doesn’t appear to be on a path to correct this.
Female pain is both a societal and economic burden: one study carried out by WERF found that endometriosis accounts for a significant reduction in productivity – 11 hours per woman, per week. Another study indicated that chronic pain costs the UK economy between £5billion and £10billion in lost productivity. “Women buck up and go to work, but they’re just not as productive because they’re in pain,” says Hummelshoj.
This rings true for millions of Britons today. For 31-year-old Charis Ayton, losing her job as a result of endometriosis has had a catastrophic impact on her mental health and wellbeing. “It started affecting work as I was taking so much time off, and I eventually had to leave. It affected absolutely every aspect of my life and I’ve dealt with depression and had suicidal ideation,” she says. A 2020 inquiry found that the majority of people surveyed reported that their mental health, career and education had been affected by the condition. About 90 per cent said they would have liked access to psychological support but were never offered it. Ayton’s experiences also highlight the further barriers that those from Black, Asian and minority ethnic communities face. “It took me about two years to convince my GP that I had endometriosis and refer me to see a gynaecologist,” Ayton recalls, adding that she was told her symptoms could be attributed to Irritable Bowel Syndrome, vitamin D deficiency or her weight.
It’s a similar situation for Laura Jayne Halton. Now 36, she believes she has suffered with endometriosis since she was a teenager, but only had a successful diagnosis in 2017 following years of self-advocacy work and research. “I couldn’t get answers. The doctor would say, ‘maybe it’s IBS. Maybe you’ve got a food intolerance. Maybe you need to exercise more.’ I started questioning my own sanity.” During one pain episode, she recalls feeling as though “barbed wire was being wrapped around my insides and someone was tugging at the end of it.” Halton is one of approximately 1.5 million women in the UK and Ireland currently awaiting treatment – a waiting list which has been made worse by the pandemic.
Not being believed is a common thread in Roche, Ayton, and Halton’s experiences, and is a seismic and prevailing problem both in the UK and internationally. Part of the solution to this, Hummelshoj believes, lies in early education. “Menstrual wellbeing is crucial. We need to get into every single school and teach young women what is and isn’t normal when it comes to menstruation. We also need to provide GPs with the tools so that when a young woman presents with symptoms that suggest endometriosis they know what to do with it, and they know to take it seriously,” Hummelshoj concludes.
Awareness of the condition has increased dramatically in recent years, with celebrities speaking out about their own experiences of the condition, and a surge in support pages and personal accounts on social media that help to bring about a greater understanding of the issue. Model and author Chrissy Teigen underwent laparoscopic surgery in February and shared her emotional journey on social media. Lena Dunham has spoken frequently about her endometriosis, which led her to undergo a total hysterectomy aged 31. Alexa Chung, who opened up about her diagnosis in 2019, launched a partnership with The World Endometriosis Research Foundation with a limited-edition edit of T-shirts to raise vital funds for research.
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.
SUBSCRIBE TO OUR NEWSLETTER
Stay up to date with our latest news and activities