The smiles exchanged say a lot about their pleasure in meeting. That evening, eight patients with endometriosis are gathered in a small room in the mother-child hospital of the CHU de Nantes. This disease, which affects one in ten women, is characterized by the migration of endometrial fragments outside the uterus, forming lesions and scars in other organs of the abdomen.
On the menu of discussions: how to adapt your diet to reduce inflammation and pain? A nurse, a naturopath and a “resource patient” lead the session, which aims to be as interactive as possible: Chinese portraits on eating habits, images to evoke one’s relationship to food, quiz on recommended recipes and foods to avoid ( red meat, alcohol, coffee, excess sugar, etc.).
Coping better with illness
Since March and until next June, about twenty women aged 20 to 50 follow this therapeutic education program free of charge, intended to live better with endometriosis. Divided into six sessions of two and a half hours, it covers many aspects: understanding the disease, managing pain, diet, sexuality and emotional life…
“It is important for women to understand how this disease works in order to become actors in it,” explains Claire Cardaillac, obstetrician-gynecologist at the University Hospital of Nantes, who spent a year in a Quebec hospital specializing in its care. “There is a lot of research going on but no definitive treatment yet,” she continues. This is why therapeutic education has its place. »
This program involves several specialists (psychologist, osteopath, sophrologist, etc.) and “expert patients” trained for the occasion. Like Élodie Béguin, 45, operated on 14 times, in particular to remove painful lesions. She founded the Endonescence association in Nantes to help the women concerned find the right resources.
Impact on working life
“This disease has a huge impact on daily life, and you can feel completely lost,” says the latter, dismissed from her company because of her recurring absences related to endometriosis. Some participants have also launched a disability recognition process to obtain accommodations at work. “Some mornings, we are in so much pain that we are unable to get up, says Claire Aubry, a 35-year-old salesperson, diagnosed in 2022 after fifteen years of medical wandering (the average is around seven years). Being able to telecommute on those days, wearing jogging, would change everything. »
The CHU sessions also allow participants to share their tips. Here, a patient tells us how to wean herself off fizzy drinks, which are bad for the stomach. There, another advises an easily digestible iron supplement.
Critical support from loved ones
The youngest participant of the evening does not yet have an official diagnosis but is already suffering all the pangs of the disease: regular crises, fatigue, painful sexual intercourse… “My companion is very understanding and very attentive”, greets Camille , 23 years old, tourism student. The crucial question of the support of the entourage will also be addressed during the last session, where each participant can invite a loved one (spouse, parent, etc.).
“Patients tend to feel guilty about being tired when it’s normal,” says Lucie Duclos, gynecology nurse and program coordinator. Their loved ones need to hear what they are going through to promote communication. It is also a way for them to assert themselves. A recovery of confidence favored by the strength of the group. “For the first time, greets Claire Aubry, I do not feel alone in the face of this disease which is rotting our lives. »