Endometriosis: patients now waiting nearly a decade to get a diagnosis for 'debilitating' condition

• A new report on the diagnosis delays for endometriosis has found that waiting times are getting worse.
• Endometriosis UK partnered with Cysters to shine a spotlight on diagnosis delays.
• They have found that despite increased awareness, delays have gotten worse in every region of the UK.

The average wait to get a diagnosis of endometriosis is now nearly a decade, a new report from charities Endometriosis UK and Cysters has found.

Patients now wait on average nine years and four months get answers, up from an average of eight years previously in 2020. Whilst those from ethnically diverse communities have an even longer average wait of 11 years.

Regionally, diagnosis delays have also soared, with patients in Scotland now waiting an average of 10 years and two months, up from eight years and 10 months; patients in Northern Ireland now wait nine years and 10 months, up from nine years and four months, and patients in Wales still wait nine years and 11 months.

An estimated 1.5 million women in the UK are affected by endometriosis, which is a systemic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body. This can cause painful symptoms such as chronic pelvic pain, painful periods, painful bowel movements, painful urination and painful sex. It can lead to chronic pain, poor quality of life, infertility and other complications when left untreated.

The report is based on an online survey from September 2025, with over 3,000 responses from those who had received a diagnosis of endometriosis from a healthcare practitioner in the UK since 2015.

As well as highlighting the staggering delays women are waiting for a diagnosis, it also found that when seeking help for their symptoms from medical professionals, 83% of respondents reported being told they were “making a fuss about nothing”, that their symptoms were normal or similar dismissals.

Over half (55%) of those who responded to the survey had attended A&E due to their symptoms, with 29% going three or more times. When asked what happened when they had attended A&E, with symptoms before diagnosis, 46% responded “Nothing; I was told to go home”.

Kirsteen Sullivan MP, Chair of the All-Party Parliamentary Group on Endometriosis, said: "Whilst I am appalled by the shocking waiting times across the UK for women to receive a diagnosis for endometriosis, I am regrettably not surprised. For too long, women's health issues have been sidelined, and this must change. Endometriosis can be debilitating and devastating. Anyone suffering from this condition deserves timely and compassionate diagnosis, treatment and care.

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Last year, we launched the Endo the Battle campaign to highlight the challenges that endometriosis patients face across the UK. Our anonymous survey was inundated with over 400 responses, with patients sharing stories of diagnosis delays, symptoms being normalised and having to go private or travel abroad to access healthcare due to lack of services or lengthy waiting lists.

What is endometriosis?

Endometriosis is a systemic inflammatory condition where tissue similar to the lining of the uterus is found elsewhere in the body, including the lining of the pelvis, the ovaries, fallopian tubes, bladder, or bowel. This can cause debilitating symptoms such as pelvic pain, painful periods, painful bowel movements, painful urination, infertility and pain during or after sex.

If you have been affected by the content of this article or suspect you may have endometriosis, you can find out more about the signs and symptoms and what support is available at the Menstrual Health Project.