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On 7 July, NICE published draft guidance recommending two technologies for use in primary care while more evidence is gathered.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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Endometriosis After Menopause: Understanding the Risks and Symptoms

Endometriosis is a condition in which endometrial tissue grows outside of the uterus, causing pain and discomfort, and it can affect women of all ages, including after menopause. Although endometriosis symptoms can decrease after menopause, they can also reactivate with rising estrogen levels. Existing endometriosis can persist past menopause, and in some cases, it can develop several years after menopause. However, it is difficult to determine whether postmenopausal cases are new or if they were previously undiagnosed.

Endometriosis is a condition in which endometrial tissue grows outside of the uterus, causing pain and discomfort, and it can affect women of all ages, including after menopause. Although endometriosis symptoms can decrease after menopause, they can also reactivate with rising estrogen levels. Existing endometriosis can persist past menopause, and in some cases, it can develop several years after menopause. However, it is difficult to determine whether postmenopausal cases are new or if they were previously undiagnosed.

For more information, you can check out the following full article

Schwartz, Z. (2021, January 20). Endometriosis After Menopause. Verywell Health. https://www.verywellhealth.com/endometriosis-after-menopause-7111721.

Non-Hormonal Drug Shows Promise in Relieving Endometriosis Pain

A clinical trial involving 100 women in Edinburgh and London is testing whether dichloroacetate, a drug licensed for the treatment of childhood metabolic disorders and some cancers, can relieve the chronic pain and other symptoms of endometriosis. The disease affects around one in 10 women of reproductive age and occurs when tissue similar to the womb lining grows elsewhere in the body, causing inflammation, pain, and scarring. Current treatments, including hormone-based drugs and surgery, have side effects and are not suitable for all patients. Dichloroacetate would be the first non-hormonal, non-surgical treatment for endometriosis if the trial is successful.

The clinical trial, which is funded by the Scottish government and the women’s health charity Wellbeing of Women, follows previous research that showed cells from the pelvic wall of women with endometriosis produced higher amounts of lactate. Dichloroacetate was found to reduce lactate production and the size of endometriosis lesions in lab and mouse experiments. The trial will assess whether the drug can alleviate pain and other symptoms of endometriosis, which affects 1.5 million women in the UK alone. The hope is that the trial will confirm dichloroacetate’s effectiveness, paving the way for the first new class of endometriosis drug in 40 years.

[Source: The Guardian] (https://www.theguardian.com/society/2023/mar/08/endometriosis-new-treatment-non-hormonal-drug-dichloroacetate)

Symptoms of Endometriosis – 2022 update

Over the years Endometriosis has gone from a virtually untalked about condition to a world-wide well known condition, throughout that time we have tried to offer support to thousands of women who have researched the condition using this site.

It’s been a while, but as the condition has become more widely recognised the list of common symptoms have increased, the following list are the most common symptoms reported today, if you have some of these, and are concerned – then do talk to a medical professional.

  • Painful cramping (often similar to menstrual cramps)
  • abnormal periods (irregular / painful)
  • pain during intercourse
  • lower-back pain
  • pelvic pain
  • Fatigue (often long-term for long periods of time)
  • Constipation / bloating
  • Diarrhea
  • Spotting / Bleeding between periods
  • Infertility

It’s important to remember that many of the symptoms above, can also occur for other reasons, including normal non-endometriosis related conditions etc… but if concerned to please consult a medical professional.

Film Night to raise awareness of Endometriosis – Basingstoke

On the 15th of August the Endometriosis UK Basingstoke group is having a fund-raiser and awareness raising night.

This takes place at the Ark Conference Centre at 7:30pm, the group will be showing the documentary Endo What? which has had world-wide reviews since it’s release.

The film explains about Endometriosis, a disease which we know affects more than 1 in 10 women globally, the film explores the current knowledge on the disease, it’s potential causes and covers common treatment options.

Further information on the event is in the poster attached below.

 

Endo What - Monday August 15th 7:30pm
Endo What – Monday August 15th 7:30pm

Pesticides linked to increased risk of Endometriosis.

Recently published research from the Fred Hutchinson Cancer Research Center have indicated a link between endometriosis risk and pesticide use.  The study published in Environmental Health Perspectives consisted of over 250 women with surgically confirmed Endometriosis (the only reliable way to confirm a diagnosis of Endometriosis) and a control group of 538 women between the years of 1996 and 2001.

Within the context of past studies of organochloride pesticides indicating estrogenic properties, this indicated a potential to increase the risk of conditions such as Endometriosis which are estrogen driven, until now larger scale studies have not examined the potential risk in relation to exposure to any great depth.

The study concludes

“In our case–control study of women enrolled in a large health care system in the U.S. Pacific Northwest, serum concentrations of β-HCH and mirex were positively associated with endometriosis. Extensive past use of environmentally persistent OCPs in the United States or present use in other countries may affect the health of reproductive-age women.”

 

Mirex pesticides have been banned in many countries, for example the United States banned it in 1976, prior to this it was in widespread use in order to prevent the spead of fire ants.

β-HCH or  beta-Hexachlorocyclohexane is a byproduct of lindane also a banned pesiticde since at least 1985 – however studies as recent as 2009 have found that the chemical still exists in water and soil across used areas.  it is also foudn pesent in many people with tentative links to Parkinsons and Alzheimers  (Medscape Medical News – July 2009).  With its long life and prolonged existence in the environment this is of ongoing concern for women with an increased risk of Endometriosis.

 

Endometriosis and Cancer Link – new research shows

New research undertaken by researchers in Sweden have found a indicative link to an increased risk of some cancers.  After examining the records of 65,000 patents, along with data from the National Swedish Cancer Registry the researchers found that women with Endometriosis were  more likely to develop ovarian cancer, brain tumors, endocrine tumors, and non-Hodgkin’s lymphoma.

The researchers also concluded that there was a decrease in risk for cervical cancer across the study group.   The study found that the actual increase in risk was minor, it may prompt further research from other nations, such studies, if a link is found – may be able to indicate new treatment and research paths for further treatment and diagnosis.

Other studies.

It’s worth noting another study in April 2013 indicated that the risk of ovarian cancer was reduced in women with Endometriosis who underwent excision surgery to remove and clean-out the endometriosis.

 

We hope that studies such as these will help researchers and consultants treat patients in the future.

Endometriosis sufferers have a higher risk of Crohn’s disease.

A study, done over 10 years, consisting of over 35,000 Danish women who had been hospitalised due to endometriosis has found that there is a significantly higher risk of Crohn’s disease.

 

The study concludes that where Endometriosis has been surgically verified, the risk of having Crohn’s disease is 80% higher than those without.  Where the diagnosis had not been confirmed surgically (symptom only diagnosis) the risk was 50% higher than the normal population.  The study was undertaken from 1997 to 2007, the women were then followed up for up to 13 years, 320 of the women developed Inflammatory Bowel Disease and 92 with Crohn’s disease.

Crohn’s disease generally causes complications within the gastrointestinal tract, including diarrhoea, vomiting and weight loss.

The study was led by Dr. Tine Jess and a team of researchers at the Statens Serum Institute in Copenhagen, Denmark.

BMJ journal Gut article:

Teenage Symptoms may serve as indication of Endometriosis Severity in adults.

A study undertaken over several years has indicated that the most extensive form of Endometriosis may be predicted by the severity of menstrual periods in teenage girls.

The extensive form of Endometriosis is know as “Deep Infiltrating Endometriosis” (DIE).  There are three distinct forms of Endometriosis (not to be confused with different stages/levels): Superficial Endometriosis, Ovarian Endometriosis and Deep Infiltrating Endometriosis.  DEep Infiltrating Endometriosis is the most extensive, women with this condition will usually have extensive deposits of Endometriosis leading to adhesions in multiple parts of the body, including the vagina, bladder and ligaments that attach the uterus to the pelvis.

It is not unusual for several years (or longer) to go before a woman is diagnosed with Endometriosis due to the difficulty in diagnosis (the only reliable way is still a laproscopy and direct examination of the endometrium cells) and the number of diseases that can be similar to Endometriosis or may present at a similar time due to complications.  However the study, undertaken by Dr Charles Chapron and colleagues included nearly 230 women who had surgery at a medical center between 2004 and 2009, of these 43% had DIE and the rest had the less extensive forms (Ovarian and Superficial).

During the study symptoms and histories were taken, this has led to a general conclusion (however more studies are needed from multiple sources to confirm or to enable more firm conclusions) that women who suffered from more painful periods and were prescribed birth control pills to treat this pain were more likely to suffer from DIE.  Such evidence could lead to faster diagnosis of this severe type of Endometriosis.

However the study also concluded that any advance in diagnosis would not prevent the eventual progression to this invasive form of Endometriosis.

 

Original article source content (for the purposes of brevity this has been interpreted and re-written)

SOURCE: Fertility and Sterility, online November 11, 2010.

Endometriosis : Managing Stress

We found this online the other day , it’s well written advice and it deserves to be spread – as a result here it is, credit is linked below.

 

What can I do to prevent endometriosis? Although endometriosis is rarely life-threatening, it affects life on two very critical levels—well-being and fertility. Women are often surprised by the differences they can make in ending the misery of endometriosis.

Taking charge of the disease involves change. There is no getting away from it. it requires a real willingness to invest in yourself and alter some daily routines and ways of thinking about the disease, as follows.

• Build a support system. This begins with finding a doctor who understands endometriosis and how it has affected you in particular. There is no use in convincing skeptical practitioners that you are suffering from a real condition if they persist in believing that your symptoms are psychosomatic.

Discuss your condition with family members and friends in a calm and tactual manner. Explain what you have learned about the disease and why you are feeling the way you do. Severe menstrual camping attributed to prostaglandin levels, painful intercourse, and mood swings due to hormone fluctuations are real factors ha die disease. Now that your loved ones know it’s not “in your head,” ask for their help in getting you through any especially difficult time. If you feel you need pyschological counseling either alone or in ramify therapy to help sort out your feelings shout the impact of the condition on you and on others, seek help now.

The “career woman’s disease” touches the lives of millions of women who must deal with their condition and continue to work efficiently. This can be a problem. Many employers are not interested in hearing that employees suffer from chronic disorders such as endometriosis. As with sufferers of PMS, women with endometriosis may be assumed to be overly self-indulgent during menstruation. It has been estimated that 140 million work hours are lost each year to the symptoms of endometriosis, a fact that the business world cannot ignore.

Yet, they do. Now it is up to you. Your wisest strategy is to be consistently reasonable at work and prudent about whom you inform of your condition. Although your impulse may be to educate your employers and coworkers, many of whom may have the disease or know others who might, not everyone may be sympathetic to you. They are two schools of thought about discussing this disease and its effect on women, and doing so on the job. Some avoid public disclosure, feeling it is best to be discreet. They are concerned that knowledge of their condition may he used against them, that is, used as a reason to bold them hack from greater responsibility and promotions.

Other women fed that having endometriosis is not a stigmatizing factor and that a calm, honest, and educational approach will not hinder their career advancement. These women are bolder about their approach to the disease. They may disseminate information about endometriosis, or post notices of discussion groups to alert women to what they can do for themselves and for others, too. Knowing they do not have to keep silent about their condition and finding even one other woman at work who shares their problem gives them a psychological boost and an important sense of supportiveness. The action you do or do not take at work will depend entirely on the kind of job you have and the general tone of your workplace. You will know best what to do in this case.

 

Post contents from:  http://fdadrug.net/2009/05/endometriosis-managing-stress

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