06 mars 2023
On the occasion of the European week of prevention and information on endometriosis, focus on the question of the management of this potentially disabling gynecological disease which concerns one in ten women of childbearing age.
“If you had a magic wand, what would you change in your care? ». This is the question posed to a thousand patients included in the French ComPaRe Endometriosis cohort, the results of which were published last January in the journal Journal of Women’s Health.
Why this topic? Because despite its prevalence, “diagnosis is often delayed, misdiagnoses are common, and treatment options are poor”, say the authors of the study. In fact, the medical wandering of patients lasts on average ten years before the diagnosis is made. A period during which the symptoms and certain consequences of endometriosis (pelvic pain during menstruation, during sexual intercourse, digestive disorders, fatigue, infertility) are little or badly taken care of… when they are.
The patient perspective
Because what mainly emerges from this study, which is placed from the point of view of patients, is the lack of knowledge of the medical profession. Quite logically, the improvement in knowledge and recognition of the disease by caregivers (41%), the improvement of care and support for problems specific to endometriosis (25%) and the assurance of a early diagnosis with a better diagnostic process and appropriate support (22%) are among the avenues for improvement most often cited by the participants, aged 34 on average and suffering from deep endometriosis for 42% of them .
“These results (…) will be useful for designing a better overall management of endometriosis from the patient’s point of view”indicate the authors of the study, who were able to rely on the many associations involved in the fight against endometriosis.
Associations present in the field and on the Internet all year round, and even more during this European week of prevention and information on endometriosis. EndoFrance, for example, organizes throughout the territory conferences, practical workshops, support groups, round tables… Click ici for the program.