Emma Cox
CEO, Endometriosis UK
Despite being such a common disease, securing an endometriosis diagnosis can be an uphill battle. A report reveals severe diagnosis delays and calls for urgent action.
Endometriosis UK, the charity I lead, champions the rights of all those impacted by endometriosis: a disease affecting 1 in 10 women, and those assigned female at birth, from puberty to menopause — with an impact that may be felt for life.
Debilitating diagnosis delays in endometriosis
A lack of diagnosis means no access to treatment, potentially allowing the disease to progress, with the risk of worsening physical symptoms and mental health. Our new report, published as part of Endometriosis Action Month, shows that the average time to diagnosis in the UK is now 8 years and 10 months. This is an increase of 10 months from 2020.
Nearly nine years is a long time to wait for anything, but it must feel like an eternity when you’re waiting to get answers about a disease that can affect so many aspects of life — from work and education to relationships, fertility and more.
47% of the people surveyed visited their
GP 10 or more times with symptoms
prior to receiving a diagnosis.
Endometriosis diagnosis challenges
The route to securing a diagnosis can often be circuitous, tortuous and lengthy, as 47% of the people surveyed visited their GP 10 or more times with symptoms prior to receiving a diagnosis. Half had visited A&E at least once, with less than a fifth of those receiving referral to gynaecology as a result.
Most concerningly, nearly 80% of those who later received a diagnosis experienced doctors telling them they were making a ‘fuss about nothing’ — or similar — and many had the severity of their symptoms questioned by health practitioners.
Call to cut endometriosis diagnosis times
We know that the pandemic has had a significant impact across the NHS, with gynaecology waiting times increasing by the highest percentage among health specialties. Decision-makers have historically not prioritised menstrual health, resulting in inadequate allocation of resources.
Now is the time to reverse that trend and drive down diagnosis times. We call on the four Governments of the UK to commit to a target of an average diagnosis time for endometriosis of one year or less by 2030. Urgent action is needed from NHS commissioners and providers to commit the resources needed to make that happen. We know it won’t be easy, but it is necessary — and possible.
