Sisters who waited over a decade for endometriosis diagnosis cast doubts on new 'speedier NHS tests'

Sisters who waited over a decade for endometriosis diagnosis cast doubts on new 'speedier NHS tests' Liv and Molly Smith said they suffered with pain for over a decade while waiting for an endometriosis diagnosis - the sisters shared concerns over new tests that could roll out on the NHS Two sisters who waited over a decade to be diagnosed with endometriosis said they are sceptical about new tests, said to cut waiting times, that could roll out on the NHS. Liv and Molly Smith suffered with excruciating menstrual pain for over ten years but claimed doctors dismissed their concerns as "just bad periods". The sisters said they pushed for laparoscopy surgery and were both eventually diagnosed. At the moment 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 have spoken out after the National Institute of Health and Care Excellence revealed two non-invasive, that are said to slash years off the diagnosis time, are being recommended to the NHS. The first one proposed is called Endotest - a saliva test that looks for genetic material to help support the diagnosis. The second test 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 also admit they're "apprehensive" about the success rate of the procedures due to the lack of education. 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. "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." 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 due to 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 can make it difficult to conceive. 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." 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. "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." She said the tests were a "great step in the right direction" but warned more awareness awareness on the condition was needed. Molly added: "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 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. This included updates like 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."