It concerns nearly 200 million women in the world but has long remained taboo: chronic disease linked to periods, endometriosis is beginning to be taken into account by the authorities, thanks to the freedom of women to speak.
Medical wandering, fear and helplessness. These are the feelings that have long inhabited Lorena Garcia, a Spanish thirty-something with endometriosis, as one in ten women in the world, according to the World Health Organization (WHO).
It all started over ten years ago when, overnight, the Barcelonan suffered severe pain during her period. The beginning of a Stations of the Cross which will lead her to consult around fifteen doctors, most of whom will tell her that these pains are normal.
“The doctors who take you down, treat you crazy and sometimes go so far as to tell you that you are hysterical … It was hell. I felt very lonely”, she testifies to the ‘AFP.
Little known to the general public, endometriosis is caused by a migration of cells from the endometrium, a lining that covers the inside of the uterus, outside the uterine cavity. But as they migrate, these cells cause lesions or even cysts that can be very painful and cause infertility.
– Party “from zero” –
To date, no definitive treatment exists for lack of scientific research, several experts assure AFP.
“For centuries, it was believed that it was normal for women to suffer during their period, which explains the considerable delay that we have on this disease, explains to AFP Lone Hummelshoj, executive director of the World Endometriosis Society ( WES).
This consultant founded the Danish Endometriosis Society in 1997. A work that allowed the country to adopt, five years later and as a precursor, measures to fight against the disease.
And that snowballed: Australia launched a national plan in 2017, France put together its own plan two years later and is working on the development of a national strategy, while in Great- Brittany, severe cases of endometriosis must be treated by specialized centers since 2013.
Each time, these plans are responses to the liberation of the voice of women. In France, a first awareness campaign was launched in 2016 by the gynecologist Chrysoula Zacharopoulou, now in charge of the national strategy. “It was hard work because we were starting from scratch. Everything had to be done.”
At the same time, celebrities are taking their turn to speak. Like “It girl” Alexa Chung or model Chrissy Teigen. In March 2018, actress Lena Dunham, from the “Girls” series, revealed that she had her uterus removed, with the hope of ending years of suffering caused by endometriosis.
– “No respite” –
What makes this disease difficult to understand, and therefore to treat, is that there are several forms of endometriosis: some asymptomatic, others relatively painful, but also extremely severe forms.
This is the case of Anne (note: the first name has been changed), a 43-year-old Frenchwoman, who after eight surgical operations, including a removal of the uterus, still cannot see the end of the tunnel. Migraines, fatigue, pelvic pain … The quadra, who moves with the help of a cane, had to give up his university career as well as his personal life “destroyed” by the disease.
“Endometriosis destroyed me. Since the onset of the disease, I haven’t had any respite, it’s been non-stop. And the doctors still don’t know what it is and how to help me. to get better “, she testifies.
At the height of her seizures, she had thoughts of suicide. A phenomenon far from isolated, according to Caroline Law, researcher at the University of Montfort (Leicester), who led with other researchers a reference study on the impact of the disease on the mental health of women.
“Depression, impotence, guilt at the idea of not being able to give birth … the disease has dramatic consequences on the mental health of women,” explains the researcher. An aspect however little taken into account by the health systems.