Endometriosis affects around one in 10 women of reproductive age in the UK, yet the average time to diagnosis is nearly a decade.
But that is hopefully set to change, with the introduction of a game-changing test aiming to give women faster access to treatment.
In a draft guidance issued by NICE, the independent body that advises the NHS on treatment, two new non-invasive diagnostic tests can now be used by doctors.
One is a new saliva test, which will be used in the NHS to help diagnose endometriosis – offering hope to the reported 582,744 women on the gynaecology waiting list in England last year.
Announcing the new tests, NICE healthtech programme director Dr Anastasia Chalkidou 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.
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‘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.
‘Our draft guidance reflects our commitment to getting promising innovations to patients quickly, while making sure the evidence to support their wider use is built in a rigorous way.’
What are the new treatments? #
The first test announced is called Endotest, which analyses a saliva sample for tiny biological markers called microRNAs in a laboratory, which can indicate whether endometriosis is likely present.
These results are then sent back to the treating clinician to ‘inform next steps in diagnosis and care,’ says NICE.
The second newly-recommended test, **EndoSure, **detects endometriosis by measuring electrical signals in the gut using sensor pads on the abdomen.
Patients must fast for six to eight hours before and drink water during the 45-minute test. Results are then available as soon as the test is complete.
The tests will be used and funded by the NHS while researchers collect more data on their effectiveness.
Both new tests are intended to be used to support diagnosis, referral and management, and are not standalone diagnostic tests.
NICE also announced a third technology, DotEndo, but says it ‘requires more research before NICE can recommend the NHS to fund early use of it.’
What is Endometriosis? #
Endometriosisis a painful and chronic condition where cells and tissue like those in the womb grow in other parts of the body, typically in pelvic organs such as ovaries, fallopian tubes and the outer surface of the bowel or bladder.
This results in hormonal changes and subsequent inflammation, scar tissue and severe pain. Symptoms of endometriosis include heavy menstrual bleeding, fatigue, pain when urinating, pelvic pain, difficulty getting pregnant and painful bowel movements.
Currently, it is diagnosed by using a laparoscopy, which is carried out under general anaesthesia and involves the insertion of a small camera through a tiny cut in the abdomen to look inside the pelvis for signs of the condition.
In a survey of over 10,000 women with the condition, over half reported visiting their GP more than 10 times before receiving a diagnosis, according to the All-Party Parliamentary Group.
Dr Gail Busby, consultant gynaecologist at Manchester University NHS Foundation Trust, said: ‘These tests are a game-changer because they give us answers much earlier, without the need for invasive surgery, and that means we can start the right treatment sooner. An earlier diagnosis doesn’t just change one person’s life, it frees up appointments and surgical slots for everyone waiting for care.’
How could it help women? #
Ami Robertson, 23, experienced symptoms of endometriosis age 16 but was repeatedly told she had irritable bowel syndrome.
She was finally diagnosed using the non-invasive tests, enabling her to access treatment for the first time.
The Pilates instructor from Glasgow said: ‘I spent years being told my pain was something else entirely.
‘I started to doubt myself, wondering if it was all in my head. When I finally had the test, it took less than an hour and gave me something I’d never had before: concrete evidence I could take to my doctor.
‘For the first time, I was believed, and I could finally get the help I needed. Today my quality of life is night and day compared to before. No one should have to wait years to be believed.’
Simran Chavda, 15, began experiencing severe pelvic pain at 13, but repeated GP visits and A&E attendances failed to identify the cause.
Her mother Sharan Uppal, a GP, said having the non-invasive test finally gave them the evidence they needed to push for a referral and, ultimately, a diagnosis of widespread endometriosis.
Simran from Huddersfield said: ‘Getting my diagnosis honestly felt like the best thing in the world.
‘The test itself was easy, it wasn’t painful at all – just drinking water and being monitored. Really simple. And I’m already starting to feel better after my surgery. I know it’s never going to go away completely, but I know I’m not going to be in pain all the time, and that means everything.’
Comment Now Sharan, 46, added: ‘We were hitting roadblocks everywhere.
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‘I lost count of how many times I took Simran to the GP. We ended up in A&E three or four times, spending over 10 hours on one occasion, and nobody would take ownership. When the test came back strongly positive, it gave me the empowerment to go back to our GP and push for a referral.’
Metro's Senior Lifestyle Reporter, Alice Giddings, shares her thoughts #
I battled for two years to get my endometriosis diagnosis, and that meant voluntarily going under the knife while doctors told me there was a chance it was ‘all in my head’.
So of course, not one but two new diagnostic tests that don’t require surgery are a welcome relief. Simply having to give a saliva sample and attach some abdominal pads to your stomach is a godsend for those seeking their endometriosis diagnosis.
There’s nothing worse than going under general anaesthetic and anxiously waking up, not knowing if that invasive surgery was all for nothing. This could give countless women the peace of mind they deserve, and if it really cuts the diagnosis time, that’s game-changing.
My only worry is experts saying these tests will only be used where endometriosis is suspected. Obviously, we don’t want to use NHS resources where they’re not needed, but the main battle with getting an Endo diagnosis is getting your doctor to believe that you have it in the first place.
I saw four doctors before a nurse mentioned in passing to me that my symptoms sounded like Endometriosis, a condition not a single GP had ever mentioned to me in nearly two years of searching for answers.
What is more fundamentally important is that doctors are properly educated on this debilitating condition and know that they should be turning to these two new diagnostic methods, not an ultrasound. If that happens, then we’re in business.
Do you have a story you’d like to share? Get in touch by emailing MetroLifestyleTeam@metro.co.uk
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