If you are a woman aged 20 to 50 interested in gynecological health issues or obstetric violence, chances are that your Instagram algorithm has been offering you ads for supposed remedies for endometriosis for a few months now. This content can take various forms (capsule cures, herbal teas, meditation classes, etc.) and is offered in pop and girly packaging. Prices vary: expect to pay around 40 euros for a 90-gram box of «gummies» (gelatinous sweets), 30 euros for a box of twenty capsules against “painful periods”, or 540 euros for a weekend retreat on the theme of “cyclical woman”.
Problem: there is currently no curative treatment for endometriosis. The only treatments available are painkillers, hormonal treatments to “put it on hold” and, as a last resort, when endometriosis is very advanced, major surgery (such as removal of the uterus, or hysterectomy). Claiming to have found a new cure for this disease is therefore a pure and simple scam. Especially since no study proves the effectiveness of these products, courses or spiritual retreats.
However, many patients are tempted by this sponsored content on Instagram, and for good reason: their suffering is often not taken seriously by medical staff. So they buy products seen between two posts by friends or influencers, in desperation, even if it means losing a lot of money.
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“The effects are nothing”
Youna*, 25 years old and suffering from endometriosis, is very upset. “On Insta, I see a lot of things going by, things based on hemp essential oils or gummies herbal remedies to relieve pain. I’ve tried it before and of course, it didn’t do anything. I haven’t seen any changes, it’s a scam! The only thing that helps me is the pill, but it messes up my hormones and my body. I have no choice, unfortunately.”
Julie*, 29, is waiting to see the results of her recent purchases, even if she remains skeptical. “I see these types of Instagram posts quite often. Most of the time, I don’t care because they don’t suit me. Often, they promote plants and I don’t really believe them. Then, once, I saw an ad that was a bit more “quality” than the others, with a pretty crazy description of my symptoms. The thing also supposedly gives me a boost of energy. Because of endometriosis, I get very tired very quickly, especially in the middle of the day, when I can fall asleep sitting down, or on public transport. In short, it really seemed to suit me and I told myself that we only live once. For the moment, the effects are nothing, and I’ve already done three months of “treatment”…”
Clémence*, 22, has been denouncing these excesses on social networks for several months, which she considers sectarian. She calls out brands, but also influencers who praise the merits of totally useless, even dangerous products. She herself suffers from endometriosis, and sees these advertisements every day on Instagram. “The influencers in question will often say “try this, it’s really good”, or “I bought CBD stuff from this store, it’s great, I’m living again”. These are very anti-drug and anti-pill speeches.”
Beyond the scam, Marie denounces sexist marketing. “Some brands even sell products that are supposed to boost libido, which is sometimes low because of endometriosis. Because it’s well known: when you don’t feel like making love, it’s problematic!”the twenty-something complains. The sales pitches of these brands often associate endometriosis with diseases or conditions that have nothing to do with it, such as polycystic ovarian syndrome (PCOS), premenstrual syndrome (PMS) or acne. An absurd catch-all, but one that works.
The danger of these speeches also lies in the encouragement to stop hormonal treatment or contraception without medical advice. A few weeks ago, Clémence, beside herself, commented on the publication of an influencer who was praising the merits against endometriosis of yet another herbal product. “I wrote something like, ‘It’s well known that cherry stems and mindful breathing cure endo.’ People liked it in droves.” Clémence was blocked by the influencer in less than ten minutes, like all her friends who liked her comment. This juicy business hates contradiction.
Influencers sell the merits of questionable products. | Endo Info screenshot via Instagram
Deeper roots
How did it come to this? “You shouldn’t think that scams are only on Instagram. There are also clinics and doctors who sell magic powder. I regularly get reports.”notes Marie-Rose Galès, an endometriosis patient expert, author of several books on the disease and an activist for raising awareness of this cause. According to her, the problem has deeper roots: some patients find nothing to relieve their pain and are not listened to by the medical profession, when they are not even advised to use products that can be seen… precisely on the internet and on social networks.
“We are shocked to see coaches on Instagram saying that we must heal our femininity to heal our endometriosis. However, this idea of ”feminine nature” was created by doctors and still exists. Endometriosis is said to be psychosomatic, the manifestation of trauma. When you hear that and you come across an ad for a 300 euro course supposed to heal your trauma and thus make the endometriosis disappear, you find it logical, since your doctor told you about it.”continues Marie-Rose Galès.
Especially since the treatments validated by science proposed to relieve pain are not suitable for everyone. The pill, while it is a real way for many patients to tame the disease by preventing the onset of periods through continuous use, is contraindicated for some due to its numerous side effects. Furthermore, it has no effect on neuropathic pain, which is common in cases of endometriosis.
There remains artificial menopause, i.e. injections of GnRh analogues (the natural hormone that releases eggs), but it is less and less recommended because of its very serious side effects. And it is expensive: “It’s about 300 euros reimbursed at 65% because it is considered a comfort treatment. When you then enter the name of the doctor who prescribed it to you in Transparency Health [une base de données publique qui rend accessible l’ensemble des liens d’intérêt entre les entreprises et les acteurs du secteur de la santé en France, ndlr]you usually see the link he has with the lab. Afterwards, we should not be surprised if some patients decide to pay 1,000 euros for a training course to spend two days in a tent, breathing incense and eating organic carrots while looking for what trauma caused their illness.agaces Mary-Rose Welsh.
So what do we do? We try things and sometimes it helps. Some have their favorite products, which can sometimes relieve pain. Many of these remedies are available on the internet and were found through advertising or word of mouth. The problem is that today, the only data on these alternative treatments is empirical, and the fate of women is not of sufficient interest to research for real studies on potential treatments to be conducted.
*Names have been changed.
