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Severe pain every month: Endometriosis is often diagnosed late (symbolic image)

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Some people writhe on the bed during their period and only survive the day with painkillers. Sometimes there is pain during sex, sometimes it radiates into the legs, sometimes it is accompanied by a severe bloated stomach. These are all signs of endometriosis. According to a recent study, women in Germany are receiving this diagnosis more and more frequently.

In 2022, doctors documented the chronic disease in 9.5 out of 1,000 women, an increase of 65 percent compared to 2012. The increase in diagnoses tends to be due to increased awareness of the disease and not necessarily to increased awareness Risk, write the experts from the Central Institute for Statutory Health Care in Germany (Zi).

The study was based on cross-health insurance billing data from more than 35 million legally insured girls and women in Germany; the minimum age was ten years. Accordingly, the diagnosis of endometriosis was documented in almost 340,000 of the patients in 2022; the median age of those affected was 40 years old.

The disease is probably often diagnosed with a significant delay, the study says. On average, the first symptoms appear in the early 20s.

Tissue in the wrong place

According to Zi, endometriosis is one of the most common gynecological diseases in girls and women. In the disease, tissue similar to the lining of the uterus grows outside the uterine cavity. Similar to the tissue in the lining of the uterus, it builds up and breaks down regularly over the course of a cycle, but unlike the lining of the uterus, it cannot drain away.

Depending on which area is affected, the so-called endometriosis foci cause different symptoms due to adhesions, adhesions and inflammation. Possible symptoms include cramps and severe pain during periods or during sex. The diagnosis is sometimes only made when the causes of an unfulfilled desire to have children are looked for. But it also happens that affected women do not notice their illness.

Still underdiagnosed

Despite evidence of increased awareness, estimates of endometriosis frequency still exceed the number of diagnoses in Germany, the study says. Accordingly, many women still know nothing about their illness and live with the symptoms for a long time until they receive help.

The Zi experts write that there could be several reasons for the high suspected number of unreported cases. It is possible that patients only seek treatment late. Complaints during periods are often trivialized and accepted as normal. On the doctors' side, this could be due to insufficient billing options and the high effort required to record the relevant information.

The experts report that a laparoscopy is necessary to definitively confirm the diagnosis. If in doubt, however, a conversation in conjunction with an ultrasound could be sufficient to provide enough information and initiate therapy, said Charité expert Sylvia Mechsner in a SPIEGEL interview in March.

Causes still unclear

It is still unclear how endometriosis occurs. According to the professional association of gynecologists, several factors appear to play a role, including genes. According to experts, one of the risk factors could be that women today go through more menstrual cycles - and thus inflammatory processes - than in earlier times, as they become pregnant later and much less often.

Endometriosis symptoms can be relieved with painkillers, hormone therapy and surgery. This can be useful if medication does not bring relief or if there is an unfulfilled desire to have children and the endometriosis is very severe.

However, the increase in diagnoses observed in the study did not lead to more women being operated on. “The proportion of patients who received surgical services was constant over the entire period,” says the study.

irb/dpa