Between the war in Ukraine and the rebound of Covid-19, there is little space to talk about other hot topics. But March is also Endometriosis Awareness Month. In recent years, thanks in particular to the mobilization of patients, associations and certain personalities, this word has imposed itself in the media and in people’s minds. But there is still work to be done, particularly on the issue of diagnosis. However, this disease affects one in ten women in France.
Yasmine Candau, president of the association EndoFrance, has been working for ten years to ensure that patients and caregivers are informed about this long-unrecognized disease. She replied this week, through an Instaliveto our questions and those of our Internet users.
What is your background ?
I was diagnosed after seven years of medical wandering, at a time when we did not know much about endometriosis. Every time I had a cyst, we operated. Something we wouldn’t do today! I still had the good fortune to have two pregnancies, despite a fairly severe endometriosis.
Elise: “How does endometriosis appear? »
In 70% of cases, the main symptom is pain during menstruation that nails on the spot, which leads to absenteeism from school or work. But there are 20 to 30% of forms of asymptomatic endometriosis, which are often discovered during a fertility check-up, when a couple decides to have a child. Infertility is both a symptom and a consequence.
What are the causes of this disease?
Today, the scientific community ignores it. We question the environmental cause, endocrine disruptors. If there is no 100% hereditary factor, a mother who has endometriosis is five times more likely than her daughter to suffer from it.
Elise: “Are there different shapes? »
Yes. We have superficial endometriosis, which does not mean that it is not important or painful. But it remains on the surface of the peritoneum, which surrounds the organs in the belly. Endometrioma is the endometriotic cyst on the ovaries, on one or both sides. And there is deep endometriosis: this means that the lesions infiltrate the organs by more than 5 mm, nodules can pierce the diaphragm, the bladder…
Can they go anywhere?
Indeed. We do not yet know by what mechanism. Every time we have our period, these lesions start to bleed. And that’s what, cycle after cycle, will create cysts, nodules, adhesions, an inflammatory climate that causes digestive disorders, pain during sexual intercourse… It’s a disease that affects the intimate . Hence sometimes the difficulty of talking about it.
Axelle: “We often talk about endometriosis, but not much about adenomyosis. »
This is another form of this disease: the lesions remain in the uterine muscle. You can have both: endometriosis and adenomyosis.
Sabrina: “Is there a difference between painful periods and endometriosis? »
Not all period pain is endometriosis. There are other pathologies that have similar symptoms: polycystic ovary syndrome and pelvic congestion. When should you consult? If you have pain during your period, but with a simple paracetamol, it passes, there is nothing to worry about. If the pain resists and it comes back every month, stronger and stronger in intensity and duration, then you have to worry.
Where are the treatments?
There is no cure, but we know how to relieve the pain and prevent the proliferation of the disease. What the High Authority for Health recommends is to stop menstruation. It can eventually stop the development of the disease and relieve pain. But that is not necessarily enough. All the doctors say that the management is multimodal. This means that there are some medications – hormonal to stop her period or painkillers to relieve the pain. But they also recommend turning to complementary medicines: sophrology, hypnosis, self-hypnosis, osteopathy… This works so well for some patients that it avoids them having to resort to opiates.
Lucie: “What are the conditions for making a request for “long-term illness” (ALD)? »
Endometriosis is not included in the list of pathologies which entitles you to 100% coverage. But anyone who meets certain criteria can apply for ALD 31. You need long-term treatment [plus de six mois], a disease that has consequences on daily life and multiple treatment. Today, you have to fill out a file with your attending physician: treatments, examinations, past or future surgeries… According to the latest figures from the ministry, 7,000 people obtain ALD 31 each year. showed the ministry is that there were inequalities in obtaining this ALD.
On the training of doctors, do you have the impression that things are moving?
EndoFrance has existed since 2001. From 2005, we had meetings with the ministry every year to ask them three things. Information campaigns, the adaptation of medical training and the establishment of expert centers on endometriosis. We had to wait fifteen years, since the decree announcing the integration of endometriosis into the training of doctors was published in September 2020. We will still have to wait a few years for these to come out of college. Continuing professional training is essential to avoid errors in care. We still have a lot of women who arrive at the association with a poor quality of life because a doctor thought he could operate on endometriosis, but we know that it is expert hands that have to do it.
This is precisely part of the national strategy launched by Emmanuel Macron in January 2022. Does it live up to the expectations of associations and patients?
We can always say that we have not been heard. Except that we start from scratch. I have been working for ten years to ensure that at the highest level of the State, we talk about endometriosis. I can only be satisfied. At the association, we received messages from women saying: “he legitimizes my illness”, “now my family believes me because the president has spoken about it”.
The strategy provides 25 to 30 million euros for research. It is enormous. He spoke of the establishment of care networks throughout the territory. This will make it possible to avoid medical wandering and inequalities in access to care. And he talked about the training of doctors in initial and continuing education.
What are the main priorities for you to better fight against this disease?
Prevention with young people. I notably published in February the book Clara’s endometriosisin BD format, based on real testimonials.