Endometriosis: Scottish women left in agony for nearly nine years awaiting diagnosis

A UK-wide report, based on a survey of 4,371 women who have received a diagnosis of endometriosis, shows that in Scotland the time it takes to be diagnosed is now eight years and ten months – longer than it was pre-pandemic.

Conducted by the charity Endometriosis UK, the report said women can spend the better part of a decade being dismissed by medical professionals before receiving their diagnosis.

“I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness,” said one survey respondent. “I persevered for over ten years desperate for help.”

Another woman said she was told she “was being dramatic and would get used to the period pain” she was having, while another said “A&E nurses told me that everyone has period pain, so take paracetamol and go home”.

Endometriosis affects around 10 per cent of women and girls globally. The Scottish Government estimates one in ten women in Scotland have endometriosis, making it more prevalent than both diabetes and asthma in the female population.

Endometriosis has been recognised as one of the Government’s priorities in the Women’s Health Plan 2021-24. The plan aims to “reduce waiting times for diagnosing endometriosis from over eight years to less than 12 months by the end of the Parliament”.

A survey by the All-Party Parliamentary Group (APPG) Inquiry into endometriosis found 58 per cent of respondents visited their GP ten or more times due to their symptoms prior to diagnosis and 53 per cent of respondents visited A&E prior to receiving a diagnosis.

Pat Menzies, Scottish development co-ordinator at Endometriosis UK, welcomed the inclusion of endometriosis in the Women’s Health Plan, but said “there really is a long way to go”.

“On top of this new research showing an average wait for diagnosis in Scotland of nearly nine years, an analysis we released in early 2022 showed that even the base level of care stipulated by the NICE guideline on endometriosis was not being met,” Ms Menzies said.

"Time and again we hear cases where women and those assigned female at birth are dismissed, ignored or belittled when going to their GP or other healthcare professionals with symptoms that could be endometriosis, including in some cases to A&E with particularly painful symptoms.

“All too often, they are told they just need to deal with it, that it's just part of being a woman, or that they're being overdramatic.”

The report recommends menstrual health and endometriosis education must be included in curricula for all healthcare professionals, and these form part of their ongoing training and development, in particular for GPs, gynaecologists, nurses, A&E practitioners and community pharmacists.

In Scotland, Endometriosis UK runs volunteer-led support groups in Ayrshire, Dundee, Edinburgh, Fife, Forth Valley, Glasgow and the Western Isles, with more to be launched later this month.