Endometriosis affects millions of women, yet the disease is still unknown to the general public. But more and more people are daring to talk about it
It concerns nearly 200 million women in the world, but for a long time it remained a taboo: the authorities began to take into account chronic diseases associated with periods, endometriosis, thanks to women’s freedom of speech.
“Doctors who despise you”
Medical fugue, fear and helplessness. Those are the feelings long held by Lorena Garcia, a 30-year-old Spaniard with endometriosis, as one in ten women in the world, according to the World Health Organization.
It all began over ten years ago, when, overnight, Barcelona experienced severe pain during her lifetime. The beginning of the Way of the Cross that will lead her to a consultation of about fifteen doctors, most of whom will tell her that these pains are normal. “Doctors who look at you with disdain, treat you like crazy, and sometimes even go so far as to tell you you’re in hysteria… It was hell. I felt so lonely.”
Not much is known to the general public that endometriosis is caused by the migration of cells from the endometrium, the 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 scratch”
Many experts assert that so far, there is no definitive cure for the lack of scientific research. “For centuries, it’s been thought that it’s normal for women to suffer during menstruation, which explains the significant delay we experience with this disease,” explains Lon Hummelshog, executive director of the World Endometriosis Society (WES).
This consultant founded the Danish Endometriosis Association in 1997. A work that allowed the country to adopt, after five years and as precursors, measures to combat the disease. And this is doubled: Australia launched a national plan in 2017, France developed its own plan two years later and is developing a national strategy, while in Great Brittany, severe endometriosis cases must be treated by specialized centers since 2013.
Each time, these plans are responses to women’s freedom of expression. In France, the first awareness campaign was launched in 2016 by gynecologist Chrysola Zacharopoulou, who is now responsible for the national strategy. “It was hard work because we started from scratch. Everything had to be done.” In 2019, then-Minister of Health, Agnès Buzyn, announced that specialized “channels” to detect and treat endometriosis, a disease that affects one in ten women in France, would be deployed in every region by the end of that year.
At the same time, celebrities take their turn to speak. Like “It Girl” Alexa Chung or model Chrissy Teigen. In March 2018, actress Lena Dunham, from the series Girls, revealed that her uterus had been removed, hoping to end years of suffering caused by endometriosis.
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 very severe forms.
Such is the case for Anne*, a 43-year-old French woman who, after eight surgeries, including a hysterectomy, still cannot see the end of the tunnel. Migraines, fatigue, pelvic pain… The quadra, moving with the help of a stick, had to give up his college life as well as his personal life “ruined” by the disease. “My endometrium has destroyed me. Since the onset of the disease, I haven’t had a period of rest, and it hasn’t stopped. And doctors still don’t know what it is and how to help me get better,” she says.
At the height of her seizures, she had suicidal thoughts. A phenomenon far from isolated, according to Caroline Low, a researcher at the University of Montfort (Leicester), who along with other researchers led a reference study on the impact of the disease on women’s mental health. The researcher explains, “Depression, helplessness, and guilt about the idea of not being able to have children…the disease has serious consequences for a woman’s mental health.” side but little taken into account by health systems.
*First name has changed