It’s been a few years since Sarah was diagnosed with endometriosis. The 38-year-old woman even underwent surgery but the surgical procedure caused significant after-effects, including severe pain. Disgusted by traditional medicine, Sarah turned to other types of practices, such as naturopathy. Over time, Sarah tested yoga, essential oils, and fell into the field of coaching focused on the “sacred feminine”, this belief according to which feminine nature and the uterus would be endowed with super-powerful powers. But as she describes it now:
“These are people who surround themselves with teams, and who make thousands of euros on the backs of patients. »
At the time, Sarah multiplied spiritual retreats, shamanic weekends and even seminars as far as Thailand. “Systems of control are put in place, because if after three, four or five years nothing works, we tell the patients that it is because they “cannot demonstrate”, that their energy does not vibrate high enough, that their stars are not aligned », she explains. The thirty-year-old stays in these environments for almost five years, feels guilty at not seeing her condition improve, and spends thousands of euros trying to get better. She ends up getting kicked out of these groups. “People were starting to denigrate the direction my life was taking. They must have suspected that I was going to realize certain things, and they preferred to put me aside », she analyzes today.
Healing courses based on vaginal herbal baths, naturopathy, invitations to reconnect with one’s “sacred feminine”, work on energies… The offers of these “miracle” solutions to “cure” endometriosis are multiplying, as described a France Bleu investigation in November 2022. Little known until a few years ago, endometriosis is an inflammatory disease, where tissue similar to the uterine lining develops outside the uterus. It causes chronic pain, digestive problems, and sometimes fertility problems. This gynecological disease which affects more than one menstruating person in ten and which is only diagnosed after seven years on average, still has neither a cause nor an identified cure: many sufferers face difficulties in finding appropriate treatment. In November 2022, Miviludes (Interministerial Mission for Vigilance and the Fight against Sectarian Abuses) alerted in a https://twitter.com/Miviludes_Gouv/status/1593606177648267264 on the fact that “women victims of endometriosis, a little-known and very painful disease, are today doubly targeted by sectarian groups”. 80% of women with endometriosis have even used an alternative practice at least once.
“There is always a slightly misogynistic idea to explain why women resort more to these alternative practices, as if they lack critical thinking. But it is linked to dissatisfaction with conventional medicine, medical wandering, the paternalism of caregivers, the psychiatrization of their symptoms,” indicates Héléna Schoefs, doctoral student in sociology at Lapsco at Clermont-Auvergne University. Faced with the limits of health professionals, some patients will “towards solutions that are the opposite of medicine, especially when the latter has proven to be violent”believes Héléna Schoefs.
Finding your “femininity”
For Pauline, 37, it all started with difficulty getting pregnant, after ten years on the contraceptive pill which had “erased” her symptoms, including menstrual pain. Marked by violence from the medical profession, she leaves the traditional path, to “find the kindness and humanity that I had not found in the caregivers”. Pauline first turned to a specialist in psychogenealogy, specializing in infertility and gynecological problems. “He boasted of having lots of birth announcements” in his office, Pauline recalls. He explains to her that as an only child, she does not have the “good place” in her family, and therefore that she could not make room for another child, which would explain her infertility. According to the practitioner, Pauline has “an energy problem at the elbows”, which he can resolve for around fifty euros per session. “So he tried to realign the energies in my elbows for half an hour”she sighs:
“It brought back to me a form of guilt that I had already had with caregivers. It was my fault because I was an only child. »
Other theories around the “sacred feminine,” like those that gripped Sarah for years, are very present online. In a few Google searches, you can come across sites indicating that “the uterus is the womb of a woman”, or that “endometriosis tells you about your barriers, about your dreams that you do not dare to live out in the open”. A way of referring the cause of suffering to the very nature of women, which silences them, makes them responsible and makes them feel guilty for their pain. For Barbara Mvogoh, of the JusticeEndo association, which fights for access to patients’ rights, these practices do not only pose a physical danger, but also a psychological one:
“Being promised a cure that doesn’t happen, for people who are already vulnerable… We end up picking them off with a spoon. »
The gray zone of therapeutic abuses
Marine, 33, started getting sick as a teenager: period pain, digestion problems and fatigue that forced her to be bedridden for one week a month. So many symptoms that pushed her to consult around thirty nutritionist doctors, osteopaths, naturopaths and therapists in France, Belgium and Germany. “I came across people who told me that they had cured endometriosis by consuming no gluten, no sugar, no lactose, and lots of vegetable juice,” remembers the one who was told repeatedly that her pain were in his head. The 30-year-old experimented with many different diets to relieve her stomach aches, “like cutting out starchy foods by eating lots of fiber” while her pain increased. She gradually sinks and believes that at this time, she was vulnerable, “a prime target”. “I started meditating, I was a good student, and I firmly believed that the problem came from me”, she remembers. She regrets, bitterly:
“We are capable of doing anything. I had nothing else, no other solution. Hope kept me going, but it was a trap. »
Eventually, doctors diagnosed Marine with Lyme disease. She also discovers that she has very severe poisoning caused by all her diets and deficiencies that date back several years. “My microbiota was completely destroyed,” says the woman who found ways to treat herself. Today, she still feels like she was fooled. “Why didn’t I wake up? », she asks herself. “A drift does not need to be sectarian to be alarming,” recalls Héléna Schoefs. For the researcher, these are therapeutic abuses, “practices which have therapeutic claims that are not scientifically proven”. For years, many professionals have been warning about naturopathy, which implies that health depends on living in harmony with the laws of nature. Or that every symptom is indicative of a deep illness: these theories maintain an individualizing and empowering vision of patientswhich poses a lot of concern in a disease as complex as endometriosis.
Health professionals who are not immune to abuses
On patient Facebook groups, and among associations specializing in endometriosis, most accounts of violence concern the medical field, from general practitioners to gynecologists. “We only talk about gurus, as if doctors were necessarily irreproachable,” annoys Marie-Rose Galès, patient and activist for better management of endometriosis, member of the Endogalaxy scientific committee, who recalls that There are “known gynecologists who affirm that patients must reconcile with their femininity to cure endometriosis”. A few years ago, the latter saw her pain explode overnight, after a cyst ruptured. Marie-Rose Galès goes to a gynecologist to try to understand what happened, “in an office in the heart of Paris, overlooking the Seine, with my hospitalization report”. From the outset, the gynecologist told her that she did not have endometriosis, but that she had had a miscarriage, which she had concealed. “I am outraged, because given the date of my last report, this is not possible”, especially since a negative pregnancy test is present in her hospitalization report. She still remembers: “He insisted, telling me that I was raped, but that I had forgotten this rape. I had a burst of rage, thinking of my friends who were raped but who we don’t believe. And to add:
“I was trying to keep my cool by explaining to him my pain during intercourse, he cut me off to tell me that it was because I was afraid of penises… Before adding that he had made a DU in psychology, so he knew the psychology of women well! »
When leaving the meeting, Marie-Rose is in a daze. It was thanks to a documentary on sectarian excesses that she understood her condition, and wrote to Miviludes, who called her back in disaster: “They explained to me the seriousness of what I had suffered.” She ends up requesting a report from the Order of Physicians, which is not spared by false beliefs. “The idea that motherhood would “cure” endometriosis, that the disease would be linked to poor management of emotions, or that the patient has psychological problems… Health professionals are not immune to these practices “, warns researcher Héléna Schoefs. Proof of this lack: it was only in 2021 that a course on endometriosis was added to the second cycle of medicine. Enough to make Pauline say that “if we want to fight against these abuses, we need medicine that allows people to heal themselves “. And to point out the medical deserts and the lack of specialists:
“When it takes two hours to drive and months to wait to find a doctor, I had no difficulty in rural areas finding energy specialists. »
Illustration from Front Page by Jérôme Sallerin.
