Following findings from a British Broadcasting Corporation (BBC) study outlining the wide-ranging toll of endometriosis, supporters — including Endometriosis UK — are calling for stakeholders from government, healthcare, and business to step up efforts to improve the lives of the 1.5 million women in the U.K. who have the chronic and debilitating disease.
Nearly all of the study’s 13,500 participants said endometriosis has badly affected their career, sex life, and mental health. In addition, most said the disease has adversely impacted their education, and that they rely on prescription painkillers, including opioids, for ongoing treatment. About half of the women respondents said they have experienced suicidal thoughts.
“This shocking new research is a stark reminder that both society and the NHS (National Health Service) need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet,” Emma Cox, Endometriosis UK CEO, said in a press release. “The impact it can have on all aspects of a person’s life — both physically and mentally — must be recognized.”
The study, a survey said to be the largest of its kind, questioned women in the U.K. about how endometriosis has affected them. Endometriosis UK assisted the BBC in collecting survey answers.
Cox called for efforts to reduce the time to diagnosis — currently 7.5 years on average — for women with the disorder. Pelvic pain associated with endometriosis is typically indistinguishable from other causes, including menstruation, urinary tract infections, pelvic inflammatory disease, and irritable bowel syndrome. That makes rendering a diagnosis difficult.
“Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time,” she said.
Saying that endometriosis costs the UK £8.2 billion (about $9.1 billion) annually, Endometriosis UK is urging the government to fully implement the National Institute for Health and Care Excellence (NICE) guidelines. Those guidelines, set forth in 2017 in “Endometriosis: Diagnosis and Management,” established minimum care to which patients should have access.
“Too often across society, women’s bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough,” she said.
By adhering to the NICE guidelines, clinicians can help erode stigmas around the disease, Dinenage said. She also called for employers to create supportive and flexible ways to help those living with the disorder.
As a result of the study, Members of Parliament are expected to launch their own inquiry into the disease’s effects.
Other advocacy groups also are calling for change.
“Health services need to wake up to the hidden and unspoken emotional pain too many women experience without the help they need to manage such a poorly understood and distressing condition,” said Sarah Hughes, CEO of the UK’s Centre for Mental Health.
Study participant Bethany Willis, 19, of the county of Essex in southeast England, said in an article on the BBC’s website that she started experiencing symptoms at age 9. However, despite having a mother and grandmother with the same disorder, she was not diagnosed with endometriosis until this summer.
“The pain is like barbed wire wrapped around your insides and someone’s pulling it away while at the same time an animal is trying to eat its way through you,” she said.
Willis said the pain was so severe that it caused her to take an overdose of medication. While recent surgery has helped her cope with the condition, she laments having dropped out of veterinary school and giving up her “dream career.”
According to the Endometriosis Foundation of America, roughly 200 million women globally are affected by the disease, which occurs when bits of uterus tissue lining grow on other pelvic organs.