These are words that patients have been waiting for for a long time. “Endometriosis is not a women’s problem, it’s a social problem”, launched Emmanuel Macron on January 11. A solemn declaration to accompany an announcement that specialists and associations describe as“historical” : that of a plan to fight against a disease long ignored, although it affects one in ten women.
→ READ. Endometriosis: the long battle of associations
25 to 30 million euros must be invested over five years. To improve the diagnosis and management of endometriosis, to better train health professionals to listen to patients, but also to advance research. A diagnostic saliva test could soon be on the market, raising hopes of earlier detection of the disease – within days, compared to an average of seven years today. But for the time being, no treatment can cure it, and the solutions to relieve the symptoms are limited.
Leading cause of female infertility
“If the word ‘endometriosis’ begins to be known, the disease is far from being overcome”, recalls the president of the Info-endometriosis association, Cécile Togni-Purtschet, herself forced into the difficult cohabitation with this « handicap invisible », leading cause of female infertility.
As the 18e European week of prevention and information on endometriosis, his association is launching a national awareness campaign. Deployed on social networks, on television and in bus shelters, posters and videos give substance to this disease which has many faces.
It’s Alicia, who is told, at 33, that her ovaries are those of a 49-year-old woman, reducing her chances of getting pregnant almost to nothing. It was Justine who, throughout her college years, regularly left class to vomit, her periods were so painful. It was Soreya who, by dint of being absent and arriving late for work one week a month, ended up being fired. It is also Maud, whose pains began from the first menstruation, at 14 years old, but who will not understand their origin until eighteen years later.
Each in their own way, these women say what endometriosis attacks in their bodies. how the disease is ” still there “, even when no one sees it. How it damages their physical and mental health. How it affects their intimate and professional life.
→ DEBATE. Can the endometriosis plan put an end to diagnostic wandering?
All of them, at one time or another, have been tempted to resign themselves. For fear of being misunderstood or because they themselves did not understand what was wrong with them, they kept silent. “We don’t know what we have, and since we don’t hear about it, we don’t tell anyone”summarizes Justine.
So of course, one can legitimately wonder if this plan of struggle, widely publicized, is completely innocent a few weeks before the presidential election. Real desire to wring the neck of endometriosis or com operation of the head of state? Probably a bit of both. But basically, it doesn’t matter, say the associations. Because for them, a first long-standing fight is about to be won: that of visibility.