New draft guidance from The National Institute for Health and Care Excellence (NICE) proposes the introduction of two non-invasive tests for endometriosis, marking a potential step forward in addressing the often-protracted diagnosis times for the debilitating condition. Endometriosis, which affects approximately one in ten women and people assigned female at birth in the UK, involves tissue similar to the womb lining growing elsewhere in the body, causing symptoms such as severe pelvic pain, heavy periods, and infertility.
The two tests, Endotest and Endosure, are designed to be offered by GPs in England and Wales as part of a three-year trial. Endotest is a spit test that detects genetic material linked to the condition, while Endosure measures electrical signals in the gut using sensor pads placed on the abdomen. While these tests are not intended to provide absolute proof of endometriosis, they aim to offer an early indication that may prompt a referral to specialist services, thereby potentially speeding up the diagnostic pathway.
The current average diagnosis time for endometriosis can stretch to several years, with many individuals experiencing a significant delay between symptom onset and official confirmation. Abbie Filer, 27, from Leeds, who was diagnosed in 2024 after a decade of severe symptoms, shared her experience of being diagnosed only after a severe complication. She highlighted that without such an acute event, she might still be awaiting a diagnosis, underscoring the challenges patients face in being heard and adequately investigated.
However, the proposed tests have received mixed reactions from patient advocacy groups. While acknowledging that 'something is being done' is positive, concerns have been raised regarding the existing infrastructure within the NHS. Abbie, who is treasurer of Menstrual Health Support Leeds, voiced worries about a potential lack of understanding of endometriosis among some healthcare professionals, which could hinder initial referrals for these new tests. She also pointed to the uneven distribution of specialist endometriosis centres across the UK, suggesting that an increase in specialists is crucial to manage the anticipated rise in referrals.
Helen Brewster, charity executive at Hey Endo!, echoed these sentiments, describing the availability of tests as 'fantastic news' but stressing the need for provisions to handle a potential surge in demand for specialist services. Her organisation, which opened its first support centre in Hull last year, has long advocated for improved diagnostic pathways. Both Abbie and Helen emphasised that while the tests are a welcome development, they must be accompanied by enhanced specialist capacity and greater awareness of endometriosis to truly make a difference for the thousands of 'endo warriors' across the country.