From 9 Years to Just a Few Days: The New Test that Could Help Many Women get Diagnosed with Endometriosis Earlier.
The NHS has just given the (provisional) green light for 2 new diagnostic tests for endometriosis: the Endotest and EndoSure. Considering that there have only been very few changes in how endometriosis is diagnosed in the last few decades, im surprised there isn’t more attention paid to this new development
Endometriosis affects around 1 in 10 women, and the average time to diagnosis in the UK is around 9 years (around 11 years for ethnic minorities)[1]. This means that on average, women spend 9 years with symptoms of endometriosis, going to the doctor, with no accurate diagnosis that explains their symptoms, until they finally get the diagnosis. The psychological toll of waiting for a diagnosis is big - the diagnostic uncertainty could be linked to increased health anxiety, hypervigilance and depression. Being told symptoms are “just a normal part of being a woman” can erode trust in yourself and your experience as well as eroding trust in medical institutions and professionals.
If you are not familiar with endometriosis, you can read more about endometriosis here.
Quick facts on the two new tests:
Endotest is a saliva test that tests for a specific pattern across 109 microRNAs. This is read by an AI model that is trained to recognise the pattern that shows up in endometriosis. It has an accuracy of around 97% [2].
EndoSure works by measuring the electrical activity in the gut during a 45-minute test, after a few hours of fasting. The idea is that endometriosis near the bowel changes those signals in a way the device can detect [3].
Why are these tests relevant?
Typically, endometriosis is diagnoses through an ultrasound, MRI scan or a laparoscopy (a surgery) [4]. The surgery is of course the most accurate way to diagnose, but it is quite invasive - most people are first checked with an ultrasound or MRI.
The problem is that there are different types of endometriosis - some of which are easily visible on ultrasounds and MRI scans (chocolate cysts, deep infiltrating endometriosis) and some are not as visible on ultrasounds and MRI scans (superficial endometriosis) [5]. Next, how accurate your ultrasound is, also heavily depends on how skilled the person is that is doing your ultrasound [6]. This combination, means that many people who truly have endometriosis, are not receiving the accurate diagnosis.
The patient journey of many with endometriosis:
A woman might have some symptoms of endometriosis, get an ultrasound done, and be told she probably doesn't have endometriosis (even though she does). She will go home, and wonder whether maybe she was being dramatic about her period pain. And wonder whether she might have another problem with her cycle, hormones or maybe have a condition like IBS. She might feel like it would be embarrassing or too much of a hassle to push for having a laparoscopy, if maybe she doesn't have endometriosis at all.
For most people, getting a medical diagnosis is a shocking moment . But for many women with endometriosis, receiving the diagnosis can feel like a big relief - they can finally stop searching for causes, and stop doubting their experience. At the same time, many may also experience grief or anger for the lost years of worry, unexplained symptoms, and untreated pain.
These tests offer real hope of finally giving clarity to the many women in the UK trapped in a “diagnostic limbo”. If these two accessible, non-invasive tools can prove their accuracy of scale, they could transform endometriosis diagnosis, first in the UK, and ultimately worldwide.
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