Tag: UK

NICE backs two non-invasive endometriosis tests, and Edinburgh finds a hormone clue

On 7 July, NICE said the NHS could start using two non-invasive endometriosis tests. The same day, researchers in Edinburgh published evidence that the condition leaves a measurable hormone pattern in the blood. Neither replaces a laparoscopy yet, but for people currently stuck in a nine-year queue for a diagnosis, both are worth knowing about.

The wait is getting longer, not shorter

Some context first. Endometriosis UK’s 2026 report on the state of care put the average time from first GP visit to diagnosis at 9 years and 4 months across the UK. For women from ethnically diverse communities the average is 11 years. The charity’s data also showed that 82.6% of people were dismissed or told their symptoms were normal, more than half had gone to A&E because of symptoms, and a third waited over a year to see a gynaecologist after being referred.

That figure of nine-plus years is worse than it was a decade ago. The charity has been blunt about this: diagnosis times have been going up, not down.

Two tests NICE says the NHS can start using

On 7 July, NICE published draft guidance recommending two technologies for use in primary care while more evidence is gathered. The plan is a three-year period of early use, with the manufacturers collecting data and NICE reviewing it annually.

Endotest is a saliva test. You give a sample, and a lab looks for microRNAs, small biological markers that are associated with endometriosis. The result goes back to your clinician to guide what happens next.

Endosure measures electrical signals in the gut using sensor pads placed on the abdomen. The test takes about 45 minutes and involves fasting first, then drinking water.

A third test, DotEndo, a blood test for disease biomarkers, was not recommended. NICE said it needs more research before the NHS should fund it.

The point of both recommended tests is that they can be done in a GP setting, without relying on a skilled ultrasound operator or a place on a surgical list. NICE’s healthtech programme director, Anastasia Chalkidou, framed it as giving primary care better tools to identify endometriosis earlier and get people to treatment sooner.

Emma Cox, chief executive of Endometriosis UK, welcomed the announcement but added a warning that is easy to skip past: the tests only help if GPs and practice nurses know when to use them. A test does not help someone whose symptoms are still being brushed off.

The consultation on the draft closed on 27 July. As of early September, final guidance has not been published, so the tests are not yet available on the NHS. That is worth remembering if you see headlines suggesting otherwise.

A hormone “fingerprint” that could become a blood test

Also on 7 July, a team at the University of Edinburgh published a study in the European Journal of Endocrinology that took a different route to the same goal.

Endometriosis has long been treated as an oestrogen-driven condition. The Edinburgh researchers looked instead at androgens, sometimes called male hormones though everyone has them, and in particular a group produced by the adrenal glands called 11-oxygenated androgens.

They measured hormone levels in the blood of 159 women with surgically confirmed endometriosis and 57 without. Those with the condition had a distinct pattern, including high levels of one androgen called 11-ketotestosterone. Using that pattern, the researchers correctly identified more than 95% of the endometriosis patients.

Dr Douglas Gibson, who led the work, described the findings as challenging the standard view of the disease and said the team hopes it leads to earlier diagnosis and, eventually, new treatments. The university is now looking for an industry partner to turn the finding into a diagnostic blood test.

Two caveats. The sample was small and not especially diverse, and the researchers themselves say larger trials are needed. Endometriosis UK said the same: promising, but early. A blood test based on this work is still years away.

What happens next

If you are waiting for a diagnosis right now, nothing has changed at your GP surgery yet. The NICE recommendations are still in draft, and the Edinburgh finding is still research.

What has changed is the direction of travel. NICE has said non-surgical tests are good enough to use while the evidence catches up, and a separate line of research points to a blood marker that could be developed alongside them. Endometriosis UK has set a target of getting diagnosis down to one year or less by 2030. Tests alone will not get there, but they are a necessary part of it.

If your GP has not heard about the NICE draft, you can point them to it. The guidance reference is GID-HTG10877 on the NICE website. And if you are being told your symptoms are normal, the Endometriosis UK helpline and symptom checker are still the most useful first steps.

We will update this article when NICE publishes its final decision.

Sources

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Conclusions that may be drawn from the Endosupp 2002 Questionnaire results

The majority of women who suffer from Endometriosis and are diagnosed with it or seek online information or support for Endometriosis are between 20 years old and 39 years old.
It should be noted that this age-range is affected by the age of

the majority of Internet users – studies show that men and women above the age of 35 tend not to utilise the Internet as extensively as those ages before 35 (this figure is improving all the time).

The majority of respondents were from the UK, this is due to many factors, the questionnaire was publicised both in the UK and in the USA on official message boards and mailing lists, however the UK community tend to have a more focused approach with many sites available for messaging, live chats etc. This led to a faster and more widespread response from the UK than from any other country. We are seeking ways of publicising the next questionnaire further.

The majority of women have been diagnosed for 1 to 5 years, this may be because women who have been diagnosed for less than a year are still learning about Endometriosis and have not yet found online resources to help them and so they haven’t learnt about the questionnaire. The drop in numbers for people diagnosed above 6 years may be because these people fall into the over 35 range and may not use the internet.

On the subject of other medical condition people suffer from several conditions stand out as having a good possibility of being closely linked to Endometriosis. Ovarian Cysts formed a massive 39 percent of other conditions that exists with Endometriosis; this may indicate that any woman who has been diagnosed with Ovarian Cysts may have Endometriosis, especially if the woman suffers from one or more of the other frequent conditions. Migraines feature highly, this is probably due to the pain and stress induced in many women by Endometriosis and probably cannot be taken as a condition linked to Endometriosis as in today’s lifestyle so many aspects can trigger off migraines. On the other hand IBS and Depression do seem to be symptoms that many women suffer from with Endometriosis. Many Endometriosis sufferers were initially diagnosed with IBS, this would indicate that Ovarian Cysts, combined with IBS – both of which can lead to depression being diagnosed – are strong indications that Endometriosis may be involved.

The symptoms that women have with Endometriosis was by far the largest ranged, but some results stand out. These symptoms could(or should) be taken as indications that a women may have Endometriosis and that potentially more diagnosis should be undertaken to ascertain if this is the case.

Fatigue is the biggest symptom; unfortunately it can be brought on my many aspects of modern life and on its own cannot be taken as a good indication. However what is apparent is that the community could benefit in help in dealing with fatigue.
Back Pain is present in a surprising number of women with endometriosis, this is another area that more information needs to be made available to Endometriosis sufferers in order to help people cope with it.
Headaches are present in many women, this is probably due to the indirect effects of Endometriosis. Fatigue and Back Pain coupled with Depression are most likely major contributors to this.
Many women suffer from bloating, from the results of the questionnaire this appears to be a good indication of Endometriosis with over 75 percent of responders suffering from it. Along side this Pelvic Pain and Painful Bowel movements along with constipation appear to be linked to Endometriosis.
A strong link is apparent between painful sex and Endometriosis, the figures may be higher than reported due to the personal nature of the question.

For more information look at the results page on www.endosupp.com.
If you want more detailed information about the results you can send an email to webmaster@endosupp.com asking for the information you requires, if you can tell us why you want the information we will respond as soon as we can.
N.B. All information divulged would be without any information that could identify the respondents in any way.

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