Women's health is being jeopardised as endometriosis diagnosis times near decade-long average

Women are waiting nearly nine years on average before receiving an endometriosis diagnosis, according to new research from Endometriosis UK

Despite increased awareness in recent years, waiting times for endometriosis diagnoses in the UK have risen to nearly 9 years.

A new study from charity Endometriosis UK shows a rise in diagnosis times in all four nations since 2020, with the current diagnosis time standing at 8 years and 10 months in England and Scotland; 9 years and 5 months in Northern Ireland; and 9 years 11 months in Wales.

Endometriosis is a long-term and often painful condition where tissue similar to the lining of the womb grows in the body. The average diagnosis time in the UK – 8 years and 10 months – has increased by 10 months since 2020 and is putting people at risk, experts warn.

Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists (RCOG), says: “Endometriosis can have significant impacts on every aspect of women’s lives – and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.”

A delay in accessing treatment can lead to worsening physical symptoms and a risk of permanent organ damage, explains Endometriosis UK. It can also be emotionally taxing, with 78% of the 4,371 people diagnosed with endometriosis who were surveyed revealing they’ve been told they were making a ‘fuss about nothing’ or similar by at least one doctor.

Meanwhile, 70% of all respondents had visited their GP five times or more with symptoms prior to their diagnosis, while 52% had visited A&E.

Endometriosis UK is calling on UK governments to commit to a target of an average diagnosis time for endometriosis of 1 year or less by 2030, while emphasising the need for more investment into research surrounding the disease, diagnosis and treatment options.

Emma Cox, CEO of Endometriosis UK, says: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. The theme of Endometriosis Action Month 2024 is ‘could it be endometriosis?’. Raising awareness of the symptoms of endometriosis with the general public, along with healthcare practitioners and those in charge of health services, will be a step towards shortening very lengthy waits.

“Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health. Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.”