This Tuesday, Emmanuel Macron announced a strategy to fight endometriosis, a disease still “little known” against which there is no treatment. Thursday, the National Assembly voted unanimously to recognize the disease as a long-term condition.
“It’s not a women’s problem, it’s a social problem”, chanted this week Emmanuel Macron in a speech about endometriosis. This Tuesday, January 11, the Government announced a national strategy to fight against this disease which is still poorly understood and poorly diagnosed in France. On this same line, the National Assembly voted unanimously for the recognition of this disease as a long-term condition (ALD).
Better communication, to better understand and better diagnose, is the strategy that the government wishes to adopt against endometriosis. This disease, still little known to the medical world, affects women of childbearing age. It is linked to the presence of cells of uterine origin outside the uterus, which react to hormones during menstrual cycles. First cause of infertility in France, this inflammatory disease affects one in ten women in the country. It is characterized by intense pain, sometimes even unbearable during, or outside periods of menstruation.
For Noëlle Génatio, these announcements are a new hope “this real pain will finally be legitimized and recognized as something truly disabling”. Diagnosed only four months ago, this 43-year-old Géromoise evokes sixteen years of suffering, alone in the face of the disease. “During adolescence, I had very painful periods, but my mother told me that it was normal. When I started talking to doctors about it five years ago, I was told that endometriosis was a fad”. It was while searching the internet that Noëlle realized that her symptoms were similar to those of the disease.
“I took a lot of codeine to relieve myself”
Regularly, she feels pain similar to that of childbirth, or encounters digestive problems at any time of the day. For several years, to relieve these pains that impacted her daily life as an educator and mother, Noelle had no solution but to ingest powerful painkillers. “I took a lot of codeine, it was the only thing that relieved me to be able to live almost normally. Sometimes it wasn’t even enough, and it also impacted my behavior” she explains.
Communities to free the voice of women affected
Today, she has chosen to turn to alternative medicine, such as naturopathy or acupuncture. Solutions that she shares on a Facebook group dedicated to women affected by the disease in the Grand Est, and of which she is at the initiative. “living in the Vosges and being isolated, I realized that many of us might be affected by endometriosis without really knowing what to do”. Much more than a group for sharing the addresses of doctors with knowledge of the disease, it is also a place of exchange, where everyone’s voice is heard. It is also a way of connecting caregivers and affected women, for example, thanks to this group, Noëlle was able to contact a radiologist specializing in endometriosis in Epinal.
To counter the pain, natural and alternative solutions
Creating a community around endometriosis to offer alternative solutions to surgery and drugs is also a project that Emilie has been leading for a few months. Self-employed, she accompanies individually affected women. To help raise awareness of the disease, it regularly offers informative content on its social networks, or conferences. Like Noëlle, she has chosen to offer an online group which has nearly 3,500 members, to discuss and allow free speech around this subject.
Affected since adolescence by endometriosis, this 30-year-old has gradually seen the symptoms of her disease worsen “The pain became daily. In less than a year, I was hospitalized six times because the pain became unbearable. It had become a real handicap”.
Having become daily, the pains felt by Emilie impacted her daily life, so much so that she was forced to resign from her position as a pharmacy assistant. “I had daily symptoms, neuropathic pain. My legs hurt all day, even though it’s a job where you have to stand”. Like many women affected by endometriosis, engaging in a dialogue about these little-known pains with her employer is sometimes complicated. “The disease was not recognized, I could not ask for adapted hours or other, and I did not want to take sick leave all the time”.
Other than in the world of work, the fact that endometriosis is very little known to the medical world and to the general public has an impact on the wallets of affected women. Not covered by social security, patients can pay substantial sums for treatment, or to have surgery. An observation confirmed by Emilie “I have clients who can spend up to 300 euros per month in parapharmacy to relieve pain”.
This Thursday, the National Assembly unanimously voted for a text proposed by La France insoumise to have the disease recognized as a long-term condition. This motion for a resolution invites the Government to begin a reflection on the subject, and to allow 100% coverage by health insurance.