On social networks, young women are making endometriosis a political fight

“You just have to tuck in your stomach and squeeze your buttocks” ; “Anyway, you’re always tired” ; “Your pain is in your head, I’ll give you an antidepressant” ; “You just have a stomach ache, it will pass… like all girls your age” ; “Ah yes, endometriosis… it’s the new fashionable disease…”

We could blacken this page with testimonials collected on the Instagram account @balance_ton_endo, followed by nearly 13,000 subscribers. In a punchy fashion, they illustrate the prejudices faced by women with endometriosis. Friends, family, the general practitioner, the school nurse, the sports teacher… Those around you have an unfortunate tendency to minimize the evils of an invisible disease. For teenage girls, it’s a double jeopardy. “We don’t take them seriously and what’s more, it upsets their schooling”, deplores Marie-Rose Galès, 32, expert patient, activist and author of several awareness-raising books for 15-25 year olds.

“Clever Little Monster”

A growing number of young women are taking refuge on social networks, within communities where information sharing, mutual aid and sorority are promoted. “As we have often been sent flying, from doctor to doctor, we support each other and we give each other all our tips, says Sterenn Le Run, 22, behind the @mon.endo account on Instagram. Exchanges are ultimately simpler online: that’s why the “endo” community is so strong. »

Frequent gynecological disease which affects one in ten women, endometriosis is “characterized by the abnormal presence, outside the uterine cavity, of fragments of tissue similar to that of the lining of the uterus”, according to the definition of the National Institute of Health and Medical Research (Inserm). It can be asymptomatic, but also affect different organs. If no specific treatment exists to date, the list of symptoms often seems endless: intense pelvic pain, painful and/or heavy periods, digestive disorders, difficulty urinating, chronic fatigue, etc. Endometriosis is the subject of a government action plan, launched in January. It aims to “better management, awareness and diagnosis of endometriosis”.

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Marie-Rose Galès was diagnosed in 2016 after crossing a « no man’s land » over fifteen years. She compares the disease to “a clever little monster, which does a lot of damage” since it can attack organs, nerves or tissues and cause painful lesions.

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