Endometriosis groups ‘crying out’ for cut in diagnosis time

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This week The National Institute for Health and Care Excellence (NICE) released draft guidance recommending new tests be made available on the NHS, aiming to provide quicker diagnosis.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

The tests are not absolute proof of endometriosis but can provide an indication that may result in referral to specialist services.

However, not every GP will have access immediately and use must be overseen by a healthcare professional with expertise in endometriosis diagnosis and management.

Abbie admits she has “mixed views” on the tests, with her concerns including a current lack of understanding of endometriosis in order to identify it 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 is treasurer of peer group Menstrual Health Support Leeds, and says the consensus among members is the tests were a “side-step” rather than a step forward.

Her other concern is tackling long waiting times for further action once initial results come back, she says, suggesting an increase in specialists was needed.

Leeds has a dedicated endometriosis centre which she describes as “incredible”, but other areas do not, meaning service provision is not evenly spread.

However “it is nice to know that something is being done”, she adds.

Abbie’s concern on infrastructure is shared by Helen Brewster, charity executive at Hey Endo!.

The charitable incorporated organisation (CIO) provides a support network for people living with gynaecological conditions, and 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?”

The tests being widely available is “fantastic news” she explains, as long as provisions for a potential increase in a demand for services is also addressed.

Helen adds that despite “archaic notions” still being attached to endometriosis, a greater awareness is a positive to 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.

“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 possibility of reducing endometriosis diagnosis times would be “absolutely huge”, says Dr Sarah Jarvis.

Speaking to BBC Radio Sheffield, the GP explained 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.”

According to the GP, because symptoms are often non-specific and varied, patients can mistakenly be diagnosed with other conditions first.

“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.

“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.”

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