More than 10% of women have endometriosis. Taboo for a long time, the disease has suffered from delays in awareness, information and care. In recent years, it has benefited from a change of perspective, to the point of becoming a public health issue. But a lot remains to be done.
It took more than 20 years for the EndoFrance association, created in 2001, for its work to succeed at the highest level of the State. On January 11, 2022, the President of the Republic, Emmanuel Macron, announced the launch of a national strategy to fight endometriosis, making it a public health issue. At least 10% of women have endometriosis, a disease that “is characterized by the growth of uterine lining-like tissue outside the uterus, causing pain and/or infertility“, as stated the World Health Organization. In New Aquitaine, 135,000 to 225,000 people would be affected, according to l’ARS.
Over the past few years, the care, understanding and outlook towards people with the disease have begun to change. This Tuesday, March 28, world day against endometriosis, is an opportunity to remember that there is still a long way to go.
With 40% of cases, endometriosis is also the leading cause of infertility. According to the WHO, endometriosis affects 190 million people worldwide. “The figure we have is one in 10 menstruating people who are diagnosedexplains the president of EndoFrance, Yasmine Candau. But there is between 7 and 10 years on average of delay in diagnosis, so it is surely much more. A medical wandering which tends to be reduced with the arrival of the national strategy and the establishment of care channels throughout France since 2022. “But the issue will not be resolved overnight. Of course in New Aquitaine, it’s easier when you live near Bordeaux than in Creuse”notes the president of EndoFrance.
Women’s pain has been trivialized for too long. It was said: “A woman has a stomach ache when she has her period and that’s normal.”
Yasmine Candau, president of the EndoFrance associationwith web writing France 3 Aquitaine
To make matters worse, the disease is difficult to detect and manifests itself in several ways. Some people can be affected mildly, yet with very acute pain – during menstruation, sexual intercourse, for example – and others seriously without feeling the slightest symptom. “There are as many forms of endometriosis as there are people with it.“, summarizes Yasmine Candau.
But a better fight against the disease also requires the training of doctors. The EndoFrance Association constantly receives messages from young women, whose doctors have not been made aware, and believe that they are lying in order to be able to miss classes. “You’re not too young to have endometriosis“, insists Yasmine Candau.
It took until 2014 for there to be a first medical congress on endometriosis and it was not until 2020 that it was added to the medical program. “It will be necessary to wait about ten years before the first trained doctors come out“, observes Yasmine Candau. But while waiting for all general practitioners to be trained on the issue, 16 specialized centers have been certified in New Aquitaine since last January.
So why so much delay when some have been warning about the disease for so many years? “Women’s pain has been trivialized for too long. We said: ‘A woman has a stomach ache when she has her period and that’s normal.’ No, it’s not normal”, answers the president of EndoFrance. Interest in endometriosis research has never been very high. Difficult to have a lot of precise data on the subject, recent studies are lacking. “There is a study on the journey of women with endometriosis, 65% consider that it impacts their professional career“, quotes Yasmine Caudan.
The president of EndoFrance is one of them. “I am one of those women who have voluntarily reduced their working hours, because it is not tenable for a whole week.“, says Yasmine Candau. In the Landes, Laure-Line Dupau, completely lost her job because she was too often absent due to the pain caused by the disease. “There is a real psychological impact of the disease: we don’t go out too much anymore because we can’t anymore. There is a certain social isolation, it’s really complicated“, assures the latter.
There are many difficulties related to the gaze of others, who do not understand well.
Yasmine Candau, president of the EndoFrance association
Laure-Line Dupau’s first symptoms appeared at the age of 13. Immediately, he is assured that it is normal and he is prescribed the pill. The pain does not return, but when fifteen years later, she decides to stop the contraceptive, the evils return, tenfold. “That’s when I was diagnosed. I had to be operated on and had a hysterectomy: they removed my uterus, fallopian tubes and cervix.“, she describes. Today the pain remains present.
“Sometimes, there are days when things are going well, we do everything to look good and the next day, the pain is such that it is not possible. So some, who don’t understand, come to question our pain“, testifies Yasmine Candau. In her case, the pain has become chronic-neuropathic, which makes the disease even more difficult to manage. “I’m lucky to have understanding relativesadmits Laure-Line Dupau. But I regularly exchange with a lot of women affected on social networks, who are not so lucky and whose even the closest people question their word.“
Despite the need for more education and awareness, she observes a global change in mentalities. Just like the president of EndoFrance, Yasmine Candau: “This is changing because we have done everything to talk about it and we continue to do so. We intervene in companies to raise awareness, for example. A few years ago, only women came. Now, there are also many men who are interested in it, because they have loved ones affected.” A long time, the subject has been taboo. Now the word is starting to break free.
However, there is still a long way to go. Today, only the symptoms of endometriosis are treated, not the disease as such. Research is essential, but it must be funded. The government seems to have taken the measure. According to Yasmine Candau, the Minister of Higher Education and Research, Sylvie Retailleau, has “well confirmed“that several million would be allocated to it in priority research programs and facilities, under the aegis of Women’s Health/Couples’ Health.
“I’m a little disappointed, because I would have liked the endometriosis to be directly arrowed, but that’s already it“, reacts the president of EndoFrance. Thanks to her association, endometriosis has become a public health issue.