Women in UK waiting almost nine years for endometriosis diagnosis, study finds

<span>Endometriosis symptoms include painful periods, painful bowel movements, pain when urinating and pain during or after sex.</span><span>Photograph: martin-dm/Getty Images</span>
Endometriosis symptoms include painful periods, painful bowel movements, pain when urinating and pain during or after sex.Photograph: martin-dm/Getty Images

Women are waiting nearly nine years for an endometriosis diagnosis in the UK, according to research that found health professionals often minimise or dismiss symptoms.

The study by the charity Endometriosis UK suggests waiting times for a diagnosis have significantly deteriorated in the past three years, increasing to an average of eight years and 10 months, up 10 months since 2020. In Scotland, the average diagnosis time has increased by four months.

The report, based on a survey of 4,371 people who have received a diagnosis, shows that 47% of respondents had visited their GP 10 or more times with symptoms before being diagnosed, and 70% had visited five times or more.

The chief executive of Endometriosis UK, Emma Cox, said: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision-makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.”

Endometriosis is a condition where tissue similar to the womb lining grows elsewhere, such as the ovaries and fallopian tubes, and can affect fertility. Symptoms include painful periods, painful bowel movements, pain when urinating and pain during or after sex. It is thought to affect about one in 10 women of child-bearing age.

There are treatments, including hormone medication and surgery, but the lengthy delays to diagnosis have been a continuing problem that prompted the inclusion of endometriosis and gynaecological problems in the government’s women’s health strategy, launched in 2022.

The latest evidence, however, suggests waiting times have worsened. Early diagnosis is important because the disease may progress, leading to more severe physical symptoms and organ damage and restricting the ability to make informed choices that can affect fertility.

Only 10% of respondents said GPs had mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed. More than half had visited A&E at least once, and 17% of those were referred to gynaecology at their first visit. The findings were compared with a similar survey undertaken in 2019-20 before the Covid pandemic.

The report includes examples of patients’ experiences, with many being told that their pain was “normal”.

One said: “I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help.” Another said she had been told she was “being dramatic” after going to her GP as a teenager with painful periods. Another said: “A&E nurses told me that everyone has period pain so take paracetamol and go home.”

In response to the report, the minister for the women’s health strategy, Maria Caulfield, said: “More must be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report.

“We launched our women’s health strategy to do just this, listen to women. Endometriosis is a priority area within our strategy, so expect to see more in this space. In addition, we are rolling our women’s health hubs across the country to support more women with specialist care required with this condition.”

An inherent challenge is that endometriosis can only currently be diagnosed by a laparoscopy. The symptoms also vary between people and overlap with other conditions, meaning it is not something a GP can definitively identify. Endometriosis UK, however, is calling on governments to commit a target of an average diagnosis time of a year or less by 2030 and urging NHS commissioners and providers to urgently reduce gynaecology waiting times.

The Royal College of Obstetricians and Gynaecologists has previously said that gynaecology waiting times increased disproportionately during the pandemic. In response to the latest report, its president, Ranee Thakar, said: “The barriers to timely diagnosis of endometriosis and other gynaecological health conditions are complex, but it is clear that more action is desperately needed.

“We need education and national communications campaigns to support women and girls to recognise their symptoms and feel confident seeking help; we need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions; and we need investment in services to ensure that we have the right equipment and training for healthcare professionals to achieve timely diagnosis.”