Why hasn’t endometriosis care improved?

More than a million women in the UK suffer painful endometriosis but treatment has hardly progressed in 100 years. Annalise Weckesser gives three reasons why

Endometriosis was identified in the 1920s but its causes are still not understood (Getty/iStockphoto)

About 1.5 million women in the UK suffer from endometriosis, a painful and debilitating condition that can affect every aspect of life. The condition causes tissue similar to the lining of the womb to grow elsewhere – including in the ovaries and fallopian tubes – and can result in severe pelvic or period pain.

Treatments for endometriosis include painkillers, hormone medicines and contraceptives, and surgery (laparoscopy and hysterectomy). But some women find these ineffective and abandon medical treatment or seek alternative therapies. In the UK, women also wait an average of eight years for a diagnosis.

Although a recent small trial of a potential new endometriosis treatment has left researchers feeling hopeful, there is still no cure for this condition – and treatments have progressed little since the condition was recognised in the 1920s. Here are three reasons endometriosis care has been slow to improve.

1. Endometriosis is not a priority condition

Investment in research on endometriosis, and women’s reproductive health generally, remains low compared with conditions such as diabetes, which are similarly prevalent but affect both men and women.

An All Party Parliamentary Group inquiry into endometriosis care found that there have been no significant treatment breakthroughs because endometriosis research hasn’t been a priority. Worse, it means we still don’t fully understand what causes the disease, making it difficult to develop a cure.

Women with symptoms must first see a GP to receive a referral to specialist care for diagnosis and surgical treatment. But more than half of women have to visit a GP more than ten times before they are referred to a specialist. The UK’s National Institute for Health and Care Excellence urges GPs to prioritise endometriosis for further investigation to quicken diagnoses.

2. Endometriosis is poorly understood

Few people know what endometriosis is. The recent study I co-authored shows only 8 per cent of teenage girls in the UK know about endometriosis. By comparison, 39 per cent know about Parkinson’s disease, even though Parkinson’s affects about a tenth the number of people as endometriosis.

The struggle to have endometriosis accounts believed is part of a larger, systematic dismissal of women’s experiences of their bodies

Our study also found 27 per cent of teenage girls were unsure if their period was “normal”. This is important, as many adults with endometriosis didn’t seek medical help when they were younger because they thought their symptoms – such as excessive period pain or heavy menstrual bleeding – were typical. It’s argued that if young women know what typical periods are like, they’ll be better able to identify signs of endometriosis and seek care earlier. This may also quicken their diagnosis.

Research also shows stigma around discussing menstruation prevents some women from talking about endometriosis symptoms, even with doctors. Further, stigmatisation of menstruation in society as a whole means researchers and doctors are less interested in pursuing endometriosis as a speciality, hampering strides in improving care.

Endometriosis is also often mistakenly considered solely a menstrual health condition. There are non-menstruation-related symptoms with which even some health professionals are not adequately familiar, including painful urination or bowel movements, non-period-related pelvic pain, painful intercourse and fatigue. This means clinicians often misdiagnose endometriosis.

Endometriosis also does not conform neatly to biomedical models of disease, meaning disease extent doesn’t always equate to symptom severity. Some women with endometriosis may have few symptoms but have extensive “endo” (tissue), whereas others may experience severe pain but have a small amount of endo tissue. In such cases, some women report they’ve been told by doctors that their symptoms cannot be “that bad”, with their accounts seen as less credible than what is detected by currently available measures. This means endometriosis can be misunderstood by health professionals.

Professionals often trivialise symptoms as “typical period pain”. (Getty/iStockphoto)

3. Sufferers’ accounts have been dismissed for decades

In 2001, a colleague interviewed women who suffered from endometriosis. She found that health professionals trivialised endometriosis symptoms as “typical period pain”.

Nearly two decades on, our research found women still feel disbelieved and desperate for relief from their symptoms. GPs confirm women come to them “ready for battle”, expecting not to be believed or made to feel that “it’s all in their head”.

Even the previously mentioned endometriosis inquiry revealed nothing new about the dismissal of endometriosis sufferers’ accounts. This was a missed opportunity to examine how to tackle this problem. It also didn’t adequately include the experiences of people of colour and the LGBTQ+ community. Both communities that, based on existing health inequalities evidence, are more likely to have their symptoms poorly treated. In healthcare, gender biases mean women’s pain isn’t investigated as seriously as men’s. A recent Yale study even showed girls’ pain is taken less seriously than boys’.

Read More:

• 8 things people living with endometriosis want you to know
• The most excruciating pains humans can experience
• For people with endometriosis, treatment is still a waiting game

The struggle to have endometriosis accounts believed is part of a larger, systematic dismissal of women’s experiences of their bodies. Recent discussions about women’s experiences of sexual harassment, or the Duchess of Sussex’s account of racial bias in the media are both examples of women needing to fight to have their story believed. And when health professionals don’t take women’s accounts seriously, it may mean diagnosis delays and ineffective treatments.

Taking endometriosis sufferers’ accounts seriously is the linchpin to improving care. For the long-overdue improvements to endometriosis treatment, diagnosis and care to happen, we need to believe and prioritise the words of endometriosis sufferers. Greater awareness and understanding of the condition will help.

Annalise Weckesser is a senior research fellow in Medical Anthropology at Birmingham City University. This article first appeared on The Conversation.