Five million euros for an illness that had been largely ignored until then, that was like a small revolution. When the Bundestag Budget Committee made this amount available for research into endometriosis for the first time two years ago, it was not only urgently needed funding, but also a signal. An estimated 10 to 15 percent of women of childbearing age suffer from the painful condition, but for a long time it was not taken seriously. That should finally change – not just in Germany. At the beginning of 2022, the French President Emmanuel Macron has already announced that it will initiate a national strategy to combat the long-underestimated disease.
A lot has happened since then. Greater attention and financial injections have led to the disease becoming better understood. There are new treatment options, but also better diagnostics. That alone provides a new perspective on the disease. Precisely because endometriosis used to be difficult to detect without opening the patient’s stomach and looking for the inflammatory tissue that caused the disease, doctors often minimized the patient’s complaints. If there is no clear diagnosis, the “it’s all just psychological” club is quickly brandished.
However, there is still no reliable biomarker, the ultimate for diagnosing diseases, for endometriosis. This refers to characteristic measurements or molecules that can be detected in tissue, blood or other body fluids and provide a clear indication of a disease. For example, there is something like this for heart attacks, diabetes and some types of cancer, but not for endometriosis. A saliva test that was heavily promoted last year failed to live up to the hopes some had for it. “The test is no longer an issue,” says Stefanie Burghaus, head of the endometriosis center at Erlangen University Hospital. “A biomarker would be elegant, but the hope has been dashed for now,” says Sven Mahner, director of the women’s clinic at the University of Munich. “But even without such a tool and without taking tissue samples in an operation, you can be relatively safe.”
A careful anamnesis provides very clear information, emphasizes Thomas Kolben, who heads the Endometriosis Center at the University Hospital in Munich. The cardinal symptoms of endometriosis included severe pain during menstruation, urination, bowel movements, and sexual intercourse. An unfulfilled desire to have children is also often a warning sign: “20 to 50 percent of women with an unfulfilled desire to have children have endometriosis,” says Kolben. In addition, those affected often have irregular bowel movements and feel bloated around their period. Tactile and ultrasound examinations can round out the findings. “Then endometriosis can most likely be diagnosed,” says Stefanie Burghaus.
Yet, on average, women still search for an explanation for their symptoms for six years before receiving a diagnosis. They often went from doctor to doctor beforehand. This wouldn’t actually be necessary if there was greater awareness of the disease.
Editor’s note: In the SZ Health Forum on April 24th from 7:30 p.m., experts will speak online about new strategies and treatment options, and questions from viewers will also be answered. Participation is free, registration for the live stream is required at sz.de/experience.