Two sisters who waited over a decade to be diagnosed with endometriosis have expressed skepticism about new tests that could roll out on the NHS, despite the tests being touted as a way to cut waiting times.
Sisters' Long Wait for Diagnosis
Liv and Molly Smith suffered with excruciating menstrual pain for over ten years, but they claim doctors dismissed their concerns as "just bad periods." The sisters pushed for laparoscopy surgery and were both eventually diagnosed. Currently, this operation—where a camera is inserted into the pelvis through a small incision—is the only definite way to diagnose the condition.
The sisters spoke out after the National Institute of Health and Care Excellence (NICE) revealed two non-invasive tests, said to slash years off diagnosis time, are being recommended to the NHS.
New Tests Proposed
The first proposed test is called Endotest, a saliva test that looks for genetic material to help support diagnosis. The second is known as EndoSure, which detects endometriosis by measuring electrical signals in the gut using sensor pads on the abdomen.
The Smith sisters say they welcome the new technology but admit they are "apprehensive" about its success rate due to a lack of education.
Molly's Concerns
Molly, from Leamington Spa, Warwickshire, said: "I feel like if it works it's great. With endo they say have an MRI or other scans and it will show up, but actually I had all of that and it didn't show it. It's different for everyone. Currently, without this new technology there is no definite way to diagnose or test without surgery."
She added: "I like the fact that they're coming up with new ways to test for endometriosis as it's needed and this is brilliant, but it's if it works. I'm a bit hesitant about it at the moment."
"When I had scans, like the MRI, when I was younger, they just said I didn't have it and I was fine. But then I had surgery and I was riddled with it. So, I'm a bit apprehensive about it but they must have done tests and seen if it works. I just don't think it'll work for everyone as everyone's cases are different. But anything they do to help the illness is great."
Liv's Experience
Although the sisters were eventually diagnosed, Liv, 26, said she spent eight years trying to get diagnosed after starting her period aged 16. She claimed her school attendance plummeted and she was even sacked from jobs due to the amount of time off she had because of pain from the condition.
Endometriosis is a condition where tissue often found in the uterus grows outside the womb and can cause debilitating symptoms, such as severe pain, heavy periods, and difficulty conceiving.
Liv, also from Leamington Spa, said: "It's not just the bleeding and the pain, it causes so many other issues. I think there's still a long way to go, even if they are bringing in new technology."
Call for More Education
Molly, who was nine when her period started and waited until April 2010 for a diagnosis, said: "People just think it's a bad period and it's not, it's a debilitating illness. There needs to be more education out there and it should be taught at school as part of sex education."
She added: "I think GPs need to know more too as this is everyone's starting point when you have problems. This is your first point of call when you have a problem." Molly said the tests were a "great step in the right direction" but warned more awareness of the condition was needed.
"It's great having the technology there but if people don't know about it and you keep getting fobbed off, what's the point of having it there?"
NICE Recommendations
NICE said both technologies are being recommended under new draft guidance for the NHS in England and Wales. In November 2024, the independent body updated their endometriosis guidelines and made new recommendations and updated existing ones on diagnosing and managing the condition, including recommending specialist ultrasound as an alternative to MRI scans.
Dr Anastasia Chalkidou, director of the Health Tech programme at NICE, said: "A diagnosis of endometriosis can for some women take the best part of a decade, with the UK average standing at nine years and four months, and rising to 11 years for those from ethnically diverse communities. That delay means living with chronic pelvic pain that affects daily life, relationships and work."
"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."
