For thousands of women across the UK, the long and frustrating wait for an endometriosis diagnosis could soon be cut dramatically, after two new tests hailed as “game-changers” were cleared for use in GP surgeries.
In an effort to bring answers to patients sooner, the National Institute for Health and Care Excellence (NICE) has approved EndoSure and Endotest for NHS use, aiming to reduce the years many women currently spend seeking confirmation of the condition.
Endotest involves providing a saliva sample, which is sent to a laboratory to look for tiny biological markers known as microRNAs — signals that can indicate the presence of endometriosis.
EndoSure, by contrast, identifies the condition by reading electrical activity in the gut, using sensor pads placed on the abdomen.
Women taking the EndoSure test are asked to fast for six to eight hours beforehand, then drink water for 45 minutes during the procedure.
Endometriosis is a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus, which causes inflammation and scar tissue to form in the pelvic region and sometimes in other parts of the body.
It is thought that over 200,000 women and girls are affected by it in Ireland.
In the UK, the condition affects around one in 10 women of reproductive age. Yet NICE says the average time to secure a diagnosis is more than nine years — a delay that can leave patients coping with symptoms for years without clear treatment plans.
Under a new draft recommendation, the two tests will be used in the NHS for three years while more evidence is gathered on their performance, after which NICE could decide on final approval.
NICE said a third technology, DotEndo, cannot yet be cleared and requires more research before it can be approved.
Officials stressed that none of the new options are intended to serve as standalone diagnostic tools. Instead, they are expected to speed up the pathway to diagnosis and care, particularly for those who have struggled to move forward through existing routes.
The scale of the problem has been highlighted in patient experience data. A survey of more than 10,000 women by the All-Party Parliamentary Group on endometriosis found that more than half had visited their GP more than 10 times before receiving a diagnosis.
More than half of women surveyed also said they had been to A&E because of their symptoms.
NICE noted that delays can be driven by several factors, including differences in clinician expertise when carrying out transvaginal ultrasounds, as well as long waiting times for hospital gynaecology services.
At present, endometriosis is typically investigated through ultrasound scans, MRI, or laparoscopy — a procedure in which a camera is inserted through a small cut in the stomach.
With Endotest, the lab result is sent back to the GP or another healthcare professional to guide the next steps in diagnosis and ongoing care.
EndoSure delivers results immediately once the test is finished.
According to NICE, the tests are aimed at women for whom endometriosis remains suspected despite a normal clinical examination and either negative or inconclusive imaging results, or where imaging has not been used.
In March, Minister for Health Jennifer Carroll MacNeill announced that an awareness campaign around endometriosis would be rolled out across schools and workplaces.
The Endometriosis Association of Ireland has said that hundreds of women are travelling abroad for surgery due to a lack of specialist services in Ireland.
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