Endometriosis: "a women's problem" still unrecognized
“Endometriosis is a disease with a gynecological starting point,” explains Professor and surgeon Horace Roman of the Clinique Tivoli Ducos in Bordeaux. Symptoms appear at the same time as the first period and do not usually disappear until after menopause. This chronic gynecological disease starts in the uterine sphere but can subsequently spread throughout the body.
“It consists of the presence of lesions of cells having a behavior similar to lesions of the uterine lining, but which are not found in the uterus. [They move] elsewhere in the abdomen, even the thorax,” adds Horace Roman.
According to Inserm, in France, 1 in 10 menstruating people suffer from endometriosis; 70% of these people suffer from disabling chronic pain. “It's a pain that prevents us from acting on a daily basis. Young girls will not be able to go to high school, women will not be able to go to work. It is a pain that nails on the spot, which resists and does not yield with a simple analgesic” testifies the president of the association Endofrance, Yasmine Candau.
On January 11, the President of the Republic Emmanuel Macron took the floor to make endometriosis a public health issue. For the first time, a president takes the floor and announces a strategy to fight endometriosis. "It's not a women's problem, it's a social problem," declared Emmanuel Macron. A subject discussed for months by associations such as Endofrance, government teams and health professionals.
"We received a lot of testimonials from women who said they were very moved to hear the president talk about endometriosis, they said: 'It's as if he was talking to me, he describes my symptoms' […]. For us as an association, we have been working for twenty years to hear this discourse, to attract the attention of the public authorities. It's a first victory,” rejoices Yasmine Candau.
More recently, the National Assembly voted unanimously to recognize endometriosis as a "long-term condition" (ALD), which would allow full coverage of medical costs, as well as flexibility of stops illness and workday arrangements for people with endometriosis.
A DISEASE STILL LITTLE KNOWN
Endometriosis is different according to each body, it is a “very heterogeneous” disease according to Horace Roman, who adds that even today, “we don't know anything about this disease”. This is why the various specialists and experts are trying to understand and classify the various symptoms. “We talk about stages 1, 2, 3, 4, which are based on the probability of natural fertility. Patients with stage 4 have a much lower chance of conceiving naturally than patients with stage 1. In stage 4, the chances of having a child "naturally" are less than 10%, especially when fallopian tubes and ovaries are affected. […] The pain is not at all correlated to the stages. A patient in stage 1 can be very disabled by pain,” says the surgeon.
As the president of Endofrance explains, “there are three forms of endometriosis. The ovarian cyst (endometrioma), which can be seen very well on ultrasound. Deep endometriosis, which is also observed very well. And “superficial” endometriosis, which is the first form of endometriosis, and which is not seen on MRI, because it is too light. It remains on the surface of the membrane that surrounds the organs in the belly”. In the case of superficial endometriosis, the doctor bases himself on the clinical examination and the therapeutic diagnosis.
A person with endometriosis can suffer from different symptoms on a daily basis. Among them, the “endobelly”, represented by very significant bloating, causing the belly to swell “as if you were several months pregnant” specifies the president of the association. Digestive disorders such as dyschezia can appear depending on the damage, and depending on the location of the lesions, on the rectum or the colon. This is called digestive endometriosis.
Regarding the gynecological sphere, many suffer from dysmenorrhea, dysuria, but also pain during sexual intercourse. All of these symptoms cause, in the long run, chronic fatigue. To this can be added a form of anxiety. “Since the body is struggling, we sleep very badly, it wakes us up,” says Yasmine Candau. The list of symptoms differs depending on the case and the areas of the lesions.
MEDICAL ERRANCE AND LACK OF TREATMENT
Inserm estimates at seven years the duration of medical wandering before the disease is diagnosed and therefore monitored. The pain of menstruation has long been trivialized since the physiological process creates contractions of the uterus which inevitably generates some pain. “But when do you decide that it's normal to have pain? asks the president. “Even today, doctors do not know how to diagnose endometriosis. Sometimes they consider that a person who has had a child cannot have endometriosis. Some decree that endometriosis is a fashionable disease. It's bizarre to hear that. There is a real lack of medical training. »
“We don't yet know where endometriosis cells come from. For some women, there is reflux through the tubes, for others it is clearly lesions that form on the spot, without anyone understanding why” explains Horace Roman. “Therefore, the cause of endometriosis cannot be treated. Today, the only thing we know how to do medically is to block periods, to block the growth of lesions and reduce inflammation and symptoms. […] At the cost of an absence of menstruation and therefore of a contraceptive effect”.
Today, there are no definitive curative treatments but different solutions to relieve the symptoms and prevent the proliferation of the disease in the body. Often, it is a continuous pill taking.
Marlène Sarda has severe endometriosis. She is a volunteer with the Endofrance association. “I had surgery for cysts on my ovaries. I had never been told about endometriosis. When we woke up, it was a disaster. The doctor told me that I had it everywhere, down to my lungs. It was explained to me that unfortunately, by removing the cysts, the fallopian tubes and the ovaries had followed. At 34, I was told that I was going to be put under artificial menopause, that I could no longer have children and that I was suffering from endometriosis”.
Following a long wandering between various care centers, Marlène Sarda wanted to try everything to have a child, despite her endometriosis. “I was extremely well supported by the health professionals at the Tivoli centre”. After several attempts, she finally managed to get pregnant thanks to an egg donation in Spain. “In March 2021, after the failure of IVF and a first miscarriage, a new embryo gave rise to the birth of Adrien. I was 42 and a half. Obviously, this has a cost, it is not supported, but I had to go all the way, to tell myself that the disease had not won. I don't regret it, even if this course was morally really very difficult. »
Several centers and institutes have specialized in the care and support of people with endometriosis, in particular the Franco-European Multidisciplinary Institute of Endometriosis opened in 2018 in Bordeaux. To date, the institute records 3,750 consultations per year and also treats the most severe forms.
“Endometriosis will be truly resolved when a team of researchers identify a specific receptor on endometriosis cells. Then, we will create a drug that will attach itself precisely to this receptor and kill the cell that we do not want. At that point, we can make endometriosis disappear, without preventing women from getting pregnant and without having the side effects of hormonal treatments. We are nevertheless very far from this objective” concludes the surgeon.
