New stats reveal near 10-year wait-time for endometriosis diagnosis in Wales
New data released by Endometriosis UK has revealed that the average time to receive a diagnosis of endometriosis in Wales has now reached 9 years and 11 months
New data released by Endometriosis UK has revealed that the average time to receive a diagnosis of endometriosis in Wales has now reached 9 years and 11 months. Alarmingly, this figure has increased from an average of 9 years reported in 2020.
The charity says the findings, from a survey, highlight the struggles of individuals seeking diagnosis and treatment to reduce the severity of symptoms: 39% of UK respondents reported needing to visit their GP 10 times or more before endometriosis was suspected. Additionally, 55% of respondents attended A&E with their symptoms, but 46% of these were sent home without treatment.
Endometriosis is a long-term (chronic) condition where tissue similar to the lining of the womb grows elsewhere in the body. It's common, affecting around 1 in 10 women.
Symptoms vary from person to person and can be severe and debilitating:
Common symptoms include; pelvic pain, painful periods that interfere with everyday life, heavy menstrual bleeding and pain during or after sex. Around 1.5 million women in the UK are currently living with endometriosis.
Emma Cox, CEO of Endometriosis UK, said:
“It is unacceptable that those living with endometriosis in Wales have to endure years of pain and uncertainty before receiving a diagnosis. Our findings underscore the urgent need not only for increased awareness and understanding of endometriosis and menstrual health among healthcare providers, but for this to be translated into action, with appropriate levels of resources allocated by the NHS to overcome far too long waiting lists and enable access to care where and when it’s needed.
“Endometriosis care has been neglected for too long and the situation is getting worse. Governments across the UK must treat endometriosis as a common, chronic condition that requires systematic action and we want an unequivocal commitment to reduce average diagnosis time to one year or less by 2030.”
Tiffany Summerfield, a Forensic Nurse from Cardiff, said she first started noticing signs of endometriosis when she collapsed from pain in school:
"My journey to an endometriosis diagnosis was long, distressing, and often marked by not being taken seriously.
"When I was 19, I collapsed from severe period pain"
"Paramedics were called, but I was never taken to hospital, and my symptoms were dismissed as something I just had to endure.
"For years, my pain and fatigue continued to be minimised as “bad periods” or stress, despite how much it affected my daily life, and I often felt unheard and disbelieved by medical professionals.”
The Welsh Government set out plans in their Women’s Health Plan for Wales which was launched in 2024- the plans aimed to 'set out a 10-year vision to improve healthcare services for women' including for women with endometriosis.
Plaid Cymru Senedd Member, Sioned Williams, said:
"Thousands of women in Wales are suffering with endometriosis, and it's appalling that they face such long waits for diagnosis. Years of pain, uncertainty and often debilitating symptoms are unacceptable.
"This condition not only impacts their day-to-day physical and mental health, but also disrupts their education, relationships, and careers, leading to further challenges throughout their lives.
"It’s crucial that we prioritise menstrual health so women living with endometriosis can receive timely and effective care."
Endometriosis UK is calling on all UK governments to commit to reducing the average time for diagnosis to one year or less by 2030.
The charity says this will need targeted action to reduce waiting lists for gynaecology services, appropriate levels of funding and resources, mandatory and effective endometriosis and menstrual health training for healthcare practitioners, menstrual health education in schools and an acknowledging endometriosis as a common chronic condition that must be treated as a long term condition by the NHS.
The Welsh Government said: “Endometriosis is a priority area in our Women’s Health Plan and we are working to ensure symptoms are recognised and acted on sooner.
“We have funded an endometriosis nurse in every health board, created the Endometriosis Cymru website, and provided £50m to help reduce the longest waits, including for gynaecology. We are raising awareness among GPs and have introduced dedicated training for NHS staff.
“A further £3m is supporting delivery of the plan, including establishing a Women’s Health Hub in every health board by March 2026.”