“Dismissed, ignored and belittled”. The long road to endometriosis diagnosis in the UK (Endometriosis UK, March 2024)

Summary

Getting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to new research published by Endometriosis UK during Endometriosis Action Month 2024.

The new study shows that diagnosis times in the UK have significantly worsened over the last 3 years, increasing to an average of 8 years and 10 months, an increase of 10 months since 2020.   

This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage. 

Endometriosis impacts the physical and mental health of 1 in 10 women and those assigned female at birth in the UK from puberty to menopause, although the impact may be felt for life.

Content

The new report, which is based on a survey of 4,371 people who have received a diagnosis of endometriosis shows: 

• A rise in diagnosis times in all four nations since 2020, to 8 years and 10 months in both England and Scotland, to 9 years and 5 months in Northern Ireland, and 9 years 11 months in Wales. 
• Almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited 5 times or more. 
• Only 10% of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed. 
• 52% had visited A&E at least once, and fewer than a fifth of those (17%) were referred to gynaecology at their first visit. 26% of respondents visited A&E 3 or more times with symptoms prior to diagnosis. 
• 20% reported seeing a gynaecologist 10 or more times before being diagnosed. 
• 78% of people who later went on to receive a diagnosis of endometriosis had experienced one or more doctor telling them they were making a ‘fuss about nothing’ or similar comments and many had the severity of their symptoms questioned by healthcare practitioners. The number of people reporting this experience has increased from 69% in our 2020 survey.