Endometriosis now takes 9 years and 4 months to be diagnosed
Medical misogyny fuels delays in having endometriosis confirmed.
One in 10 women and those born with a uterus are affected by endometriosis, yet the average time to receive a diagnosis of endometriosis in the UK has now reached 9 years and 4 months - an increase from an average of 8 years in 2020.
This Endometriosis Awareness Month, new data has been released by Endometriosis UK to highlight the struggles of women seeking diagnosis and support. Shockingly, 39% of those surveyed needed to visit their GP 10 times or more before endometriosis was suspected. And sadly 55% of respondents attended A&E with their symptoms, but 46% of these were sent home without treatment.
Around 1.5 million women in the UK are currently living with endometriosis.
Endometriosis is a long-term condition where tissue similar to the lining of the womb grows elsewhere in the body. Common symptoms include pelvic pain, painful periods that interfere with everyday life, heavy bleeding and pain during or after sex.
Itâs often misunderstood as being solely a gynecological condition, but as a systemic inflammatory disease it can affect the entire body. Endometriosis has been linked to bowel and bladder dysfunction, chronic fatigue, brain fog, nerve pain, joint pain, and, in severe cases, spread to organs. It can contribute to infertility and is frequently mistaken for IBS, autoimmune disorders, or anxiety before the underlying disease is recognised.
Emma Cox, CEO of Endometriosis UK, said: âIt is unacceptable that those living with endometriosis 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 itâs needed. Endometriosis care has been neglected for too long and the situation is getting worse.â
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Endometriosis UK is now calling on all UK governments to commit to reducing the average time for diagnosis to one year or less by 2030. 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.
Kirsteen Sullivan MP, Chair of the All Party Parliamentary Group on Endometriosis, said, âWhilst 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, womenâs 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.â
According to a damning parliamentary report by the Women and Equalities committee published in 2024, women and girls are enduring years of pain because gynaecological conditions such as endometriosis and adenomyosis are treated with inadequate care due to a âpervasive stigmaâ, a lack of education by healthcare professionals and âmedical misogynyâ.
There is a serious investment gender gap. More money is invested in menâs health issues than womenâs. Between 2019 and 2023, there were 11 erectile dysfunction (ED) startups that attracted 28 times more capital than eight endometriosis-related ventures. For context, the same number of women live with endometriosis as men experience ED. Itâs also been widely reported that male pattern baldness is studied more than endometriosis.
And the new research published this month shows medical misogyny is still very much an issue for womenâs health with continued lack of funding into research and understanding by medical experts.
Research published in The Lancet Obstetrics, Gynaecology & Womenâs Health in 2025 showed that across the 194 WHO member states, nearly half of all countries have no national policies or clinical guidance on diagnosis or care. More than a quarter of countries lacking any publicly available clinical recommendations and only 7% have official government-endorsed clinical care guidelines. A second study found that half of all countries had no policy information available at all.
Some research that did gain attention - for all the wrong reasons - was back in 2013. The study, Attractiveness of women with rectovaginal endometriosis: a case-control study, was published by Fertility and Sterility and publicly funded by the University of Milan school of medicine. It took seven years to be retracted after being criticised by doctors for ethical concerns.
Those who suffer from debilitating diseases like endometriosis deserve better.
