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

This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage.

“Taking almost nine years to get a diagnosis of endometriosis is unacceptable,” said Emma Cox, CEO of Endometriosis UK.

It showed that only 10 per cent of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed.

According to the report, more than half had visited A&E at least once and 17 per cent of those were referred to gynaecology at their first visit.

Around 78 per cent of people who later went on to receive a diagnosis of endometriosis had experienced one or more doctor telling them they were making a “fuss about nothing” or similar comments.

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

Endometriosis UK says, despite impacting 1.5 million across the UK, governments are failing to recognise the impact of endometriosis or allocate sufficient resources to diagnosing it.

The charity 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.

In response to the report, Maria Caulfield, the minister for the women’s health strategy, 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.”

Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists (RCOG), added:“Endometriosis can have significant impacts on every aspect of women’s lives and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.

“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.”