Endometriosis has been in the media recently, but EndoFrance has been working for more than twenty years to bring this female pathology out of denial and shadow.
The first French association to fight against this disease is delighted today with a first victory with the launch of a national strategy to fight against endometriosis in January 2022. It must now ensure that the public authorities put this strategy into action. here in music.
“One to two out of ten women would be affected by endometriosis. However, it takes on average seven to ten years to make the diagnosis, ”
deplores Yasmine Candau, president of EndoFrance.
Intense gynecological pain, which occurs especially during menstruation, but also during sexual intercourse or chronically, is still too trivialized, even though it constitutes the most frequent symptoms of the disease.
Warning signs ignored
What happens in the body of the sick?
Cells similar to those of the endometrium (the mucous membrane that lines the uterus) are implanted outside the uterine cavity, particularly in the ovaries, rectum, bladder, vagina or even the lungs.
This disorder creates various symptoms: urinary and digestive problems, bleeding, chronic fatigue, neurological pain… The disorders worsen during menstruation because the lesions sensitive to ovarian hormones evolve with the rhythm of menstrual cycles.
The disease can also cause infertility in 30 to 40% of cases.
Read alsoEndometriosis: period pain, a reality long called hysteria…
Unfortunately, the warning signs are often ignored by health professionals who have little or no diagnostic training.
“The big challenge is to understand the causes and mechanisms of endometriosis, because to date there is no curative treatment,”
emphasizes Yasmine Candau.
We also do not know how to act in prevention, nor to predict the evolution of the disease.
EndoFrance has been investing in research funding since 2016: the sum allocated to it should exceed 300,000 euros in 2022.
On a daily basis, information and support for patients remain essential.
The 120 volunteers multiply local actions (300 to 400 events per year) and respond to approximately 50,000 e-mails per year.
“Women need to discuss and understand the support offered to them,”
notes Yasmine Candau.
The association has been very involved in the recent establishment of care channels as well as in the construction of the first therapeutic education programs intended for patients.
"Living with endometriosis without the quality of life being reduced is possible thanks to the therapeutic alliance of analgesic and hormonal treatments, surgery and supportive care (physiotherapy, osteopathy, acupuncture, yoga, relaxation, etc. .).»
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Public awareness work benefits from the media exposure of the association's sponsor, actress Laëtitia Milot, and rugby player Thomas Ramos.
EndoFrance now wishes to raise awareness among teenage girls.
Similarly, in the world of work, the impact of endometriosis on absenteeism and working conditions is not sufficiently taken into account.
Next March, many actions will be organized during the European Week for Prevention and Information on Endometriosis, a high point in the life of the association.