Endometriosis patients are now waiting 9 years for diagnosis in UK

Accessing a diagnosis for endometriosis in the UK now takes a year longer than before the Covid pandemic, according to a new survey published by Endometriosis UK.

The study which has been released during endometriosis awareness month, is based on a survey of 4,371 people who have received a diagnosis of endometriosis. It found that delays to access a diagnosis in the UK have got significantly worse over the last three years, increasing in England and Scotland to an average of eight years and 10 months - an increase of 10 months since 2020.

Whilst patients in Northern Ireland (the only region of the UK without a women's health strategy), are left waiting nine years and five months, and patients in Wales nine years 11 months.

Almost half of those who responded (47%) to the survey had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, with 70% visiting five times or more. Patients faced barriers having their pain believed, with one who responded to the survey explaining: "I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help."

The long delays in accessing a diagnosis and subsequent treatment can lead to a worsening of physical symptoms, progression of disease and permanent organ damage.

Only 10% of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment when symptoms were discussed. Whilst over half (52%) had visited A&E at least once, 26% more than three times and fewer than a fifth of those (17%) were referred to gynaecology at their first visit.

Shockingly 20% reported seeing a gynaecologist 10 or more times before being diagnosed. Whilst 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", with the number of people reporting comments like this increasing from 69% in the 2020 survey.

The longer diagnosis times comes as patients are left to navigate lengthy NHS gynaecology waiting lists, with Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists (RCOG), explaining: "The length of waiting lists in gynaecology services grew significantly during the COVID-19 pandemic, and grew disproportionately faster than other elective specialties. As a College, we are calling on the Government and the NHS to continue dedicated actions to address waiting lists and ensure fair and equitable recovery of services."

In response to the report, the Minister for the Women’s Health Strategy, Maria Caulfield added: "More must be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report."

What is endometriosis?

Endometriosis is a common inflammatory disease impacting 190 million people around the world. It occurs when endometrial-like tissue grows in areas around the body, often causing painful symptoms such as chronic pelvic pain, painful periods, painful bowel movements, painful urination and painful sex. Excision surgery is the gold standard treatment for endometriosis, although access to this care can be limited. When left untreated Endometriosis can lead to chronic pain, infertility, poor quality of life, and other complications.

Sarah McCann is a Trends Writer for NationalWorld who specialises in stories around TV, Film and Health. If you liked this article you can follow Sarah on X (Twitter) here. You can also share your thoughts in the comment section below.