Women with endometriosis urge ministers to speed up diagnosis and care

Endometriosis is still being treated like a mystery rather than a failure of the health system. The chronic disease affects 1 in 10 women of reproductive age and around 1.5 million people in the UK, yet diagnosis now takes an average of 8 years and 10 months. Endometriosis UK said the wait is 8 years and 10 months in England and Scotland, 9 years and 5 months in Northern Ireland and 9 years and 11 months in Wales.

The human cost is stark. In a 2024 Endometriosis UK survey of 4,371 people who had already received a diagnosis, 47% said they had visited their GP 10 times or more before anyone named the condition. Seven in 10 had gone at least five times, 52% had been to A&E at least once and 78% said a doctor had dismissed them, including with comments that they were making a fuss about nothing. The disease can cause chronic pain, painful sex, fatigue, infertility and, in some cases, permanent organ damage if treatment is delayed. For many patients, that means years of unmanaged pain, repeated appointments, fertility worries and a heavy mental-health burden.

The Office for National Statistics has shown that the damage does not stop at the clinic door. It found the average age at diagnosis in England was 35, suggesting many women spend years living with symptoms that often begin in adolescence. It also found that women diagnosed with endometriosis aged 25 to 54 earned on average £130 less per month five years after diagnosis, while the likelihood of being in paid employment fell by around three percentage points. The ONS said diagnosis and impact were unequal too, varying by ethnicity and deprivation, which points to a deeper pattern of inequality in who gets believed and treated quickly.

BBC presenter Emma Barnett has put those delays and losses in front of ministers, as women describe the years they have spent being ignored, bounced between appointments and left to carry the costs themselves. The government acknowledged persistent delays in its March 2025 response to the Women and Equalities Committee, saying women and girls still faced challenges accessing care for reproductive health conditions and that more needed to be done on listening to women, education and access to services.

That promise was repeated when the renewed Women’s Health Strategy for England was published on 14 April 2026. It said gynaecological care would be streamlined to cut waiting lists and improve access for conditions like endometriosis, with a single referral point and measures aimed at years-long waits. Endometriosis UK is now pressing all four UK governments to commit to cutting average diagnosis time to one year or less by 2030, a test of whether ministers are prepared to turn concern into real reform.