Women in the UK may soon receive faster diagnoses for endometriosis following the National Institute for Health and Care Excellence (Nice) approval of two new tests that can be used in general practitioner (GP) settings. The tests, known as EndoSure and Endotest, aim to dramatically reduce the prolonged delays that many sufferers experience.
Endometriosis is a chronic condition affecting approximately one in ten women of reproductive age, characterized by the growth of tissue similar to the uterine lining outside the uterus. This can cause significant pelvic pain and affect daily life, relationships, and work. Current diagnostic pathways often involve lengthy waits for specialist appointments and invasive surgical procedures, with the average diagnostic delay in the UK standing at over nine years. For women from ethnically diverse communities, this delay can extend to 11 years.
Endotest involves a simple saliva sample that is sent to a laboratory to detect specific microRNA biomarkers indicative of endometriosis. The EndoSure test uses sensor pads placed on the abdomen to measure electrical signals in the gut, a process that requires the patient to fast for six to eight hours and then consume water for 45 minutes.
Neither test is intended as a standalone diagnostic tool but is expected to facilitate earlier identification and subsequent treatment. Nice has recommended the use of these tests on the National Health Service (NHS) for an initial three-year period. During this time, further evidence on their effectiveness will be gathered, potentially leading to final approval.
A survey of over 10,000 women highlighted the extensive diagnostic journey, with more than half reporting more than ten GP visits before diagnosis and over half seeking care at an Accident & Emergency department due to their symptoms. Delays can stem from a lack of expertise in interpreting scans and long waiting lists for gynecological services. Current diagnostic methods include ultrasound, MRI, and laparoscopy, the latter being an invasive surgical procedure.
Research has also identified a distinct hormonal 'signature' in individuals with endometriosis, which could lead to simpler, non-invasive diagnostic routes. A study led by researchers at the University of Edinburgh found differences in androgen levels, including elevated levels of 11-ketotestosterone, in women with the condition. This hormonal fingerprint allowed researchers to correctly identify over 95 percent of participants with endometriosis in the study.
Dr. Anastasia Chalkidou, healthtech program director at Nice, stated that these technologies offer primary care professionals better non-invasive tools for earlier identification, enabling quicker and more effective treatment. "These technologies have the potential to change that by giving primary care professionals better non-invasive tools to identify endometriosis earlier, allowing earlier and better treatment," she said.
Patient experiences underscore the impact of delayed diagnosis. Simran Chavda, 15, described the relief of finally receiving a diagnosis after years of experiencing severe pelvic pain, with initial symptoms misattributed to irritable bowel syndrome. "Getting my diagnosis honestly felt like the best thing in the world," Chavda said. "When I finally found out what it was, I was so relieved because now I knew what the next step was."
Consultant gynecologist Dr. Gail Busby noted that these tests are a "game-changer" for young people whose lives are significantly impacted by the condition, allowing for earlier treatment without immediate surgical intervention. Emma Cox, chief executive of Endometriosis UK, welcomed the development but emphasized the need for concurrent education for healthcare professionals to ensure prompt access and proper recognition of symptoms.