"I'm counting on you to be on the front line and spot those girls. Be the ones who will save them the age of 15 instead of 35. "At the Faculty of Medicine in Rouen, Isabella Chanavaz-Lacheray speaks as a missionary. Obstetrician gynecologist at the CHU of the city, she faces nurses in the process of becoming pediatric nurses.
From the outset, she recalls that her teaching of the day is "not really on the agenda. But you have to raise awareness about an ill-known pathology affecting all young women to whom you can make an early diagnosis. What is missing from this disease? "
Intended to practice in colleges and pediatric emergencies, future nursery nurses are responsible for detecting teenage girls with endometriosis .
A torture endured in silence
An evil that will be revealed by its main symptom: unbearable pain during menstruation. "It's not normal," says the gynecologist. But we still see it as a girl thing to say: "You have a stomach ache? Go to bed !" "
An incentive to endure their calvary in silence for about one in ten women between puberty and menopause. A suffering that the European Week of Prevention and Information on Endometriosis , in March, should make more audible.
A distressing delay in the diagnosis
If its cause remains mysterious, the mechanism of endometriosis is well known, as explained by the teacher using a diagram of the genital tract. "In fact, it's simple to understand, but the lack of knowledge of health professionals is dramatic," laments Isabella Chanavaz-Lacheray.
The only faculty of French medicine to deal with the question, Rouen is an exception. Elsewhere, endometriosis is not taught. Doctors tend not to diagnose it.
"Since my first period , I had all the symptoms. The pain made me vomit, I lost consciousness, but all the gynecologists told me: it's normal, "recalls Maude, a 41-year-old physiotherapist living in the Paris region. She had to wait in her thirties, and a cyst in the ovary : the operation that will follow will reveal her illness.
Estelle had been suffering since the age of 11 when she was diagnosed with ovarian dystrophy in 2003. "I resigned myself to accepting the pain that doctors considered normal," says the 39-year-old medical secretary. In 2013, she was operated on a uterine fibroid, but still no one to suspect endometriosis. It will take another operation, two years later, on an ovarian cyst, to be told that the disease is "likely".
Endometriosis by ids-medisitis
" What a waste of time ! Adds Caroline, a 32-year-old engineer diagnosed in 2014 at stage 4, the highest, after changing her ultrasound system. His had not noticed anything. "My luck is that EndoFrance (1) gave me the coordinates of another firm. "
A "phenomenon" between superstitions and witchcraft
This disease, which affects some 180 million women worldwide, was however discovered by microscopic analysis in 1860, its name having been attributed to it in 1927. Its symptoms have even been reported since antiquity .
The Nezhat brothers, three American surgeons, detailed it in an article published in 2012 (2). A resounding publication that positioned them as emblematic figures in the fight against a little-known disease. They returned there on its long history, mixture of superstitions and misunderstandings.
Until the 17th century, endometriosis was thus assimilated to demonic possessions and witchcraft. It was then associated with nymphomania, of which Marie Antoinette and Pauline Bonaparte were accused. Freud, meanwhile, produced, according to Nezhat, "one of the most colossal errors of diagnosis of human history" by calling hysterical probable victims of endometriosis.
Still a long way to go against preconceptions
And today, "so many women are still told that their suffering is" in the head ", says Camran Nezhat, the eldest of the three brothers. We continue to associate their pain with mental problems . I have just received an antidepressant patient while she had stage 4 endometriosis. "
To get out of this medical obscurantism, the Nezhat family created in 2014 the Endomarch (3), world event whose fourth edition was held on March 25 in more than sixty countries. A massive mobilization against received ideas. For example: that one would be out of the box while having a child.
Without actually believing it, Caroline, pregnant a few months after a second attempt at in vitro fertilization (Fiv), maintains the myth: "I secretly hope to be one of those who heal through pregnancy. The absence of menstruation has made her pain go away, and two years after the discovery of her affection, she seems to be alive again.
An ordeal of childbirth
Endometriosis causes one in three cases of infertility , and nonfertility very often leads to late diagnosis.
"It took a miscarriage for an MRI to reveal that I had endometrial cells (the mucosa lining the uterine wall, the migration of which is the source of pain, ed) everywhere," he says. unworthy Audrey, 26 years old, a dental assistant for whom becoming a mother has since been like an obstacle course.
Artificial menopause, morphine, followed by the appearance of a new cyst and the return of pain. "I now have to go through a medically assisted procreation, but the hormonal stimulation it involves also stimulates the disease," sighs the young woman.
Endometriosis, distilbene, MRKH syndrome and ... by magicmaman
This ordeal of childbirth paced by many women fuels the idea of a Grail to reach. At the age of 36, Marie thus lives her second maternity leave as a message of hope for all those who endure what she has experienced.
Years of failure and suffering before being pregnant at the fifth Fiv. "I breastfed as long as possible to delay the return of menses. And two months later, I naturally fell pregnant, without looking for it, while I had spent ten years counting the days and measuring my temperature every morning. This is proof that anything is possible. "
Pregnancy does not heal
Still, motherhood is not synonymous with healing, and incitement to pregnancy can give rise to guilt. "The only thing I hear is that you have to have a child because it treats endometriosis. It's very heavy to wear. I feel like walking around with a sign: "I want a kid," says Maude, who, however, lives a long and surprising remission.
Like diabetes or hypertension, endometriosis is a disease that can not be cured yet. This does not prevent the cure.
Surgery will be necessary to remove the lesions where the endometrium has accumulated, but if we stop there, they will generally recover. "The only way now to avoid evolution is to remove the rules by taking a pill without interruption," insists Isabella Chanavaz-Lacheray. In the majority of cases, this will suffice. Young women diagnosed early on avoid a difficult journey. "
Transform the pain
Smoother approaches than operations and hormonal treatments can play a complementary role. Osteopathy, reflexology or acupuncture prove for many to be an effective means of relieving pain, while hypnosis will transform it, as Sophie Bonnet observes at CHU Rouen.
"It allows you to be both in your body and at a distance to change body sensations," says the hospital psychologist who now houses the first expert center for endometriosis.
She initiates self-hypnosis so that the patients become autonomous. "It's a real spare wheel," said Yasmine, a 46-year-old public relations executive. With a little practice, we get away from the pain by channeling it when it rises, which avoids getting into its whirlpool. "
Flourish despite endometriosis
"To each find what suits him, but it requires psychological support , says Marie-Anne Mormina, author of Taboo disease (ed Fayard). The woman is asked to be a super-mother who never complains and succeeds both professionally and sexually. It's hard to reach, but even more so for a sufferer of endometriosis. However, we must live with it as comfortably as possible. "
After her book, Marie-Anne Mormina launched the blog Alter Endo (5), to help women flourish despite endometriosis. But the mobilizations of March reminded us that more people are in the front line.
And first of all able doctors, like nursery educators trained in Rouen, to make an early diagnosis by a simple interrogation. So that one does not say to the one who writhes in pain that it is normal.
(1) French Association for the Fight against Endometriosis.
(2) In the journal "Fertility and Sterelity".
(3) www.endo-march.org
