Endometriosis test plans welcomed but more to be done, groups say

“With endometriosis, most people end up minimising their pain, gaslighting themselves so they don’t reach out for help,” Abbie Filer explains.

“The onus shouldn’t be on them to display their symptoms in an acceptable way – patients already do so much to manage their health and push for the right care.”

The 27-year-old from Leeds was diagnosed with endometriosis 2024.

The condition – which affects one in 10 women and people assigned female at birth in the UK – is when tissue similar to the lining of the womb grows outside of it.

It can cause severe and debilitating symptoms, external such as pelvic pain, heavy periods, fatigue and infertility.

Prior to diagnosis, Abbie experienced a decade of heavy periods and Premenstrual Dysphoric Disorder (PMDD), a hormonal condition which can cause debilitating low moods, brain fog and fatigue.

In 2023, she was forced to use a catheter. After seven months of “no answers”, endometriosis was finally discovered through surgery.

“If I hadn’t gone into urinary retention, I probably wouldn’t have a diagnosis at this point in time,” she says.

Despite the condition’s prevalence, many women can wait years until they have it officially confirmed.

This week The National Institute for Health and Care Excellence (NICE) released draft guidance, external recommending new tests be made available on the NHS, aiming to provide quicker diagnosis.

The two non-invasive tests will be offered by GPs in England and Wales during a three-year trial period, while evidence is gathered on the success of the roll-out.

Endotest is a spit test that looks for genetic material, and Endosure measures electrical signals in the gut using sensor pads on the abdomen.