Endometriosis – not only a female problem

Severe abdominal pain, constant fatigue, prolonged menstrual cycles, the often unfulfilled desire to have children – these are all symptoms and consequences of one of the most common gynecological diseases: endometriosis. A disease that affects about every ten women. Those affected want to change the fact that very few people know them – they are striving for more research and education.

Danga Winterstein lives with endometriosis. The 26-year-old is studying law in Bielefeld. She had had symptoms since she was 12, and it was over a decade before she was diagnosed. Eleven years of pain, eleven years of running from doctor to doctor, eleven years of uncertainty.

at Endometrial It is a benign but chronic disease. This occurs when endometrial tissue grows in places in the body where it does not belong. Tumors form cysts and infections that can cause severe pain to sufferers. Among the most common symptoms They include abdominal pain, pain just before and during menstruation (dysmenorrhea), pain during intercourse (dyspareunia), as well as infertility and heavy, irregular menstrual bleeding. Endometriosis also occurs more frequently in sufferers and describes flatulence. Organs can also be severely restricted and damaged or even destroyed if they are severely affected by foci of endometriosis. affected by disease for every ten women.

The cycle can be very different, which is why it is also referred to as gynecological chameleon. There are sufferers who have to adapt their whole lives to their disease. Others have no complaints. But for most women, the disease is accompanied by a severe loss of quality of life. Since those affected primarily report pain during menstruation, the disease often goes undetected and undiagnosed – especially since this is only possible through laparoscopy.

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Sick and no one takes it seriously

In Danga’s case, endometriosis was first suspected when she was 16 years old. There was no investigation and no referral to a specialist. “I can’t understand it. People kept telling me I should try yoga and do more sports in general. My pain was described as a little ‘ache’. It lasted so long that I started to doubt myself,” says the student. She was only referred to another doctor at her own request. Finally gave her the diagnosis – endometriosis. The treatment or treatment of the disease must be individually adapted to each patient in order to facilitate symptom relief. A treatment has not yet been developed. Not much research has been done.

More and more people believe that not enough efforts are being made to combat the disease in Germany. Under the hashtag #EndEndoSilence, they are calling for a national strategy like the one already in Australia or the one announced by French President Emmanuel Macron. “Endometriosis is not only a problem for women, it is a problem for society,” he wrote on Twitter. “The national strategy we are launching gives millions of girls and women hope for a better quality of life,” the president said.

This is how other countries deal with endometriosis

This is already underway. The Australian Department of Health published one in July 2018 National Strategic PlanTo fight endometriosis on all fronts – through outreach, education, management, clinical care and medical research. was here Provided $22.50 million.

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in one Interview earlier this year German Health Minister Karl Lauterbach rejected such a national strategy, as was decided in France. Usually these are just ‘PR campaigns’. The public initiative may help Macron in the election campaign, but in his opinion it does not achieve the desired success with regard to the disease. The city of Lauterbach itself relies on specific research projects funded by the Federal Ministry of Education and Research. There are currently no exact plans.

The European Endometriosis Association (EEL) was established at the European level in 2005. So far it has been active in several European countries (eg Germany, France and Italy) and is currently expanding its activities to other countries. The EEL has two main objectives: on the one hand, it wants to raise public awareness and support scientific research in the field of endometriosis and other gynecological diseases, and on the other hand, it is dedicated to education and training in the diagnosis and treatment of endometriosis. To achieve these goals, a European group of medical experts in endometriosis has established a variety of activities, including for example webinars and training programs for residents. The results of their research projects are published in scientific journals and thus are made public.

Loud, provocative, sexy!

The We EndoWarriors Association takes a very different approach to this topic. Danja Winterstein also shares here: “We want to help those affected find themselves beautiful – even with scars and a belly.” The association is still very young and is currently being established. One of the first projects will be the illustrated calendar for next year 2023. Each month, a different woman presents herself and her story in the fight against endometriosis. Motto: “Loud, sexy, sexy! We convey bitter truth through beautiful art projects,” says Winterstein. The association set itself the goal of “awareness and fun education”. “My health insurance didn’t even know there were private clinics for endometriosis,” says the 26-year-old. “We struggle every day to make sure this never happens again.”

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