“It’s not a women’s issue. It is a social problem. » These words, spoken by the President of the Republic on January 11, during the launch of a national strategy to fight endometriosis, moved Caroline Seibel, 46, to tears. “It is a recognition of our disease, of our handicap, of what we experience on a daily basis. It’s not just in our head anymore. »
Caroline Seibel suffers from this still little known gynecological disease, which nevertheless affects around 10% of women of childbearing age. It takes, on average, seven years for his diagnosis to be made. She had to wait more than twenty years. The disease caused irreversible sequelae. On the occasion of the European Week for the fight once morest endometriosis, and while the ARS are in turn launching care lines devoted to its care, she has agreed to tell her daily life, like Salomé Saïdi and also Cindy, Chloé or even Claire, who themselves requested anonymity.
Caroline’s days, weeks and months are punctuated by illness. Five to eight times a day, she must use a catheter to urinate. “On Mondays and Fridays, I see the physio who takes care of my legs. On Thursdays, I see the one who takes care of the rehabilitation of the muscles in my rectum that I no longer control and, once every two weeks, I see Laurent, my energy specialist,” she lists. A rhythm that she will probably have to keep for life to relieve her chronic pain.
This Monday morning, this mother of an 18-year-old only son is out of shape. The weekend was tough. “I slept very badly. I’ve been constipated for two days. Stomach aches radiate to my right leg, she confides. I’m already at six Spasfon this morning. » The Francilienne does not have the courage to swallow her twelve daily laxatives. The long list of medications she takes is spread out on both sides of her prescription.
Pains “in the head”
Until now, she felt invisible as a patient. Diagnosed at the age of 40, she nevertheless saw her first symptoms appear with her first period, around 13 years old: menstrual pain, recurring constipation… But the taboo around menstruation shut her up in silence. As a young woman, she also suffers during sexual intercourse (dyspareunia). The gynecologists she consults keep telling her: “Nothing unusual! », « Take anti-inflammatories! » The years pass, the pains remain, until the day they become unbearable. “I mightn’t sit or walk anymore. I had horrible pains in my right leg, attacks of stomach pain so intense that I was on the verge of losing consciousness”, she says.
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