Uteruses are lined with the endometrium, a layer of tissue that thickens during a menstrual cycle. If a fertilized egg is not implanted, the lining becomes thinner and is shed during menstruation. However, if endometrial tissue grows abnormally outside the uterus, it can cause major damage. In extreme cases of endometriosis, adhesions can 'bind' a woman's organs together – from the ovaries to the bladder and intestines – and freeze them in place. Milder cases are associated with severe pain, heavy periods, inflammation and scar tissue caused by internal bleeding, fatigue and nausea. There is no known cure and treatment is aimed at controlling symptoms, normally through a combination of hormonal contraception, pain relief or surgery.
The World Health Organization estimates that endometriosis affects around one in ten women during their lifetime – about the same as the share of the world's population with diabetes. But while doctors understand why diabetes develops and how to treat it, their understanding of endometriosis is “30 to 40 years” behind, according to Andrew Horne, professor of gynecology and reproductive sciences at the University of Edinburgh and president-elect of the University of Edinburgh. World Endometriosis Society. He blames this on a lack of research and awareness caused by funding shortfalls.
Things are starting to change. A clinical trial of the first non-hormonal, non-surgical treatment for endometriosis, starting in Scotland in 2023, is showing promising results. Dr. Horne says the trial, which he co-leads, arose from further research into how endometriosis lesions form. By taking samples from patients during diagnostic laparoscopies, his team found that people with peritoneal endometriosis – that is, a disease of the lining of the pelvic cavity, which accounts for about 80% of cases – had significantly higher levels of a chemical called lactate in their pelvises than those without.
Lactate is produced when the body breaks down glucose (and is also the cause of the uncomfortable twinges that can suddenly strike runners). Its increased presence, the researchers thought, indicated a role in the development of endometriotic lesions, possibly similar to the role lactate plays in cancer cell proliferation. Scientists then looked for a drug that had already been tested in cancer patients, and eventually landed on dichloroacetate (DCA). This is also used to treat rare types of metabolic disorders in children where excess lactic acid builds up in the blood.
Lead me to your door
A small group of human patients treated with DCA reported less pain and better quality of life. A trial with a larger cohort, plus a placebo arm, is next. If the drug is approved, which could happen within the next five to seven years, DCA will be the first new treatment for endometriosis discovered in four decades.
“There is still a problem – and I hate to say it – with issues that only affect women,” says Dr. Horne. This observation is confirmed elsewhere. A report released last month by McKinsey, a consulting firm, concluded that “systematic lack of understanding of the disease” led to a loss of 40 to 45 million disability-adjusted life years for women per year, equivalent to four days of “lost” healthy living” per year per woman worldwide.
When it comes to endometriosis, a lack of medical understanding hinders both diagnosis and treatment. In a study conducted by academics at Manchester Metropolitan University, published in January in the Journal of Health Communication, British women were interviewed at various stages of obtaining a diagnosis, which last on average ten years. Many respondents said their symptoms were initially (and sometimes repeatedly) dismissed as normal menstrual pain, the result of lifestyle factors such as being overweight, or as psychological. One reason diagnosing endometriosis is such a lengthy and grueling process is that it almost always requires surgery: most lesions can only be detected by inserting a camera (although the lesions that cause cysts are generally scans appear). So to speed things up, scientists have started looking for “biomarkers” – the signatures of proteins or processes associated with a disease that show up somewhere where they are easy to test, such as a patient's blood or urine.
Ziwig, a French pharmaceutical company, claims to have found such a solution for endometriosis. The test looks for specific microRNAs – small strands of genetic material – that, one study shows, are found in the saliva of women with existing endometriosis diagnoses. In January, France's health care authority approved a pilot project to assess the effectiveness of Ziwig's 'Endotest' ahead of a potential rollout. In 2022, Emmanuel Macron, the country's president, declared endometriosis “the problem of society” and made improving treatment a national priority. .
These developments do not mean the problem of diagnosis has been solved, warns Dr. Horne, who believes more research is needed to test how endometriosis biomarkers appear in larger, more diverse populations. But after years of relative inactivity, he now finally sees endometriosis research as “a rapidly evolving field.” “I think I'm confident,” he says.
© 2024, The Economist Newspaper Limited. All rights reserved. From The Economist, published under license. Original content can be found at www.economist.com
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Published: Apr 12, 2024 6:00 PM IST