‘Crying Out’ for Change: New Tests Aim to Cut Endometriosis Diagnosis Times
For Abbie Filer, the road to an endometriosis diagnosis stretched across a full decade. The 27-year-old from Leeds endured years of heavy periods and Premenstrual Dysphoric Disorder (PMDD) — a hormonal condition that can trigger debilitating low moods, brain fog, and fatigue — before the true cause was ever identified.
“With endometriosis, most people end up minimising their pain, gaslighting themselves so they don’t reach out for help,” she says. “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.”
Her diagnosis finally came in 2024, but only after a alarming escalation in symptoms. In 2023, she was forced to use a catheter due to urinary retention. After seven months of “no answers,” endometriosis was ultimately 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.
Understanding Endometriosis
Endometriosis affects approximately one in 10 women and people assigned female at birth in the UK. The condition occurs when tissue similar to the lining of the womb grows outside of it, leading to severe and often debilitating symptoms including pelvic pain, heavy periods, fatigue, and infertility.
Despite how common the condition is, many patients wait years before receiving an official confirmation. The delay is not simply a matter of inconvenience — it means prolonged suffering, ineffective treatments, and in some cases, progressive damage that might have been mitigated with earlier intervention.
New Draft Guidance from NICE
This week, the National Institute for Health and Care Excellence (NICE) released draft guidance recommending that two new non-invasive tests be made available on the NHS, with the aim of providing quicker diagnosis.
The tests will be offered by GPs in England and Wales during a three-year trial period, during which evidence will be gathered on the success of the roll-out. The two tests in question take markedly different technical approaches:
- Endotest: A saliva test that looks for genetic material associated with endometriosis.
- Endosure: A test that measures electrical signals in the gut using sensor pads placed on the abdomen.
It is important to note that neither test offers absolute proof of endometriosis. Rather, they can provide an indication that may result in a referral to specialist services. Additionally, not every GP will have immediate access to the tests. Their use must be overseen by a healthcare professional with expertise in endometriosis diagnosis and management.
Cautious Optimism from Patients
Abbie admits she has “mixed views” on the new tests. One of her primary concerns is the current lack of understanding of endometriosis among some healthcare professionals, which could affect whether patients are referred for testing in the first place.
“For those seven months that I spent with a catheter, no-one suspected I could have endometriosis, so I wouldn’t have been referred for any of these tests,” she says.
Abbie serves as treasurer of the peer group Menstrual Health Support Leeds. She says the consensus among members is that the tests represent a “side-step” rather than a step forward. Her other concern centres on long waiting times for further action once initial results come back. She suggests that an increase in specialists is needed to handle the potential rise in referrals.
Leeds has a dedicated endometriosis centre, which Abbie describes as “incredible,” but other areas do not, meaning service provision is not evenly spread across the country. This geographical disparity remains a significant barrier to equitable care.
Still, she acknowledges a positive note: “It is nice to know that something is being done.”
A Charity Perspective: ‘We’ve Been Crying Out’
Abbie’s concerns about infrastructure are echoed by Helen Brewster, charity executive at Hey Endo!, a charitable incorporated organisation (CIO) that provides a support network for people living with gynaecological conditions. The organisation opened its first centre in Hull last year.
The 34-year-old describes her own diagnosis of endometriosis and adenomyosis as “a long road.”
“It’s good getting people listened to, getting them the referral to where they need to be,” she says. “We’ve been crying out for a long time that there needs to be something, anything at all. My query there is how long are they going to be stuck in the system?”
Helen describes the tests being widely available as “fantastic news,” but stresses that provisions for a potential increase in demand for services must also be addressed. Without that corresponding investment in specialist capacity, faster identification of likely cases could simply move the bottleneck further along the pathway.
She adds that despite “archaic notions” still being attached to endometriosis, greater awareness is a positive development for both diagnosed and undiagnosed people.
“As an endo warrior myself, I feel seen and I feel heard and I’m starting to feel supported by the country that I live in,” she says. “Finally I don’t feel like I have to hide away anymore and I know that there are a lot of other warriors out there that do feel the same way.”
The Clinical View: A Potential ‘Huge’ Impact
The possibility of reducing endometriosis diagnosis times would be “absolutely huge,” according to Dr Sarah Jarvis. Speaking to BBC Radio Sheffield, the GP explained that while the tests cannot offer “an absolute diagnosis,” they could provide an indication that informs next steps.
“Hopefully we’ll be able to order [the tests] and then the results can tell us whether we need to fast-track that patient into secondary care, into specialist care,” she said.
According to Dr Jarvis, because endometriosis symptoms are often non-specific and varied, patients can mistakenly be diagnosed with other conditions first — a pattern that delays appropriate treatment and prolongs suffering.
“Women may never have known what was causing [their symptoms] and therefore could never get the right treatment unless they had the diagnosis,” she said. “Women suffer completely needlessly in pain and really debilitated. It can have a huge impact on your life.”
She pointed to irritable bowel syndrome (IBS) as one commonly misattributed diagnosis. “You may spend years being told you’ve got irritable bowel syndrome, which is a very debilitating condition, but the treatments for it are completely different.”
The Road Ahead
The introduction of these two tests marks a meaningful — if incomplete — step toward addressing one of the most persistent problems in women’s healthcare: the unacceptable delay between symptom onset and diagnosis for a condition that affects one in 10 women and people assigned female at birth.
The three-year trial period will generate crucial evidence on whether the tests can deliver on their promise of faster identification. But as patients and advocates are quick to point out, diagnosis is only one part of the equation. Without sufficient specialist capacity, equitable geographic access to dedicated centres, and a broader cultural shift in how menstrual pain is taken seriously, the benefits of earlier detection risk being diluted.
For now, though, there is a sense — tentative but genuine — that progress is finally being made. As Helen Brewster puts it, for the first time, many endometriosis patients are starting to feel that the country is listening.