When a doctor prescribed the Androcur in 2003 to relieve her endometriosis, Emmanuelle Huet-Mignaton does not imagine a second that this medication will upset her life. “He was a renowned gynecology teacher, I trusted. At the time, Androcur was presented as an effective solution, capable of reducing disabling pain linked to this chronic disease. However, this synthetic progestin is not designed to treat endometriosis. Initially, the Androcur is intended for two specific uses: treating severe hirsutism, an excess of hair disturbing the quality of life of women or slowing down the progression of prostate cancer in men.

But from the 1990s, it was massively prescribed for other pathologies such as acne or endometriosis , uses outside its marketing authorization (AMM). These outside AMM prescriptions will concern up to 75 % of drug uses, exposing thousands of women at serious risks, often without adapted supervision. Among them: the appearance of meningiomas, benign but compressive brain tumors, which can lead to significant consequences.

"With this drug, everything will be fine"

Emmanuelle, then aged 39, accepts this treatment, reassured by the words of her doctor. "I remember asked if this medication was sure. He replied: “With this medication, everything will be fine.” This sentence remained in my mind. She cut short all my questions. »»

Reinforced by this insurance, it begins a treatment supposed to offer it a respite from the unbearable pain of its endometriosis. Before her health changed, Emmanuelle led a brilliant career as a financial consultant to the Banque de France. For years, the Androcur seems to keep its promises. “Pain has decreased considerably. I could live almost normally. »»

But as early as 2011, alert signals appear. Recurring headaches, chronic fatigue and speech troubles worry Emmanuelle. "I felt that something was wrong. But whenever I was talking about it, I was told that it was stress or overwork. I was not listened to. Faced with these unexplained symptoms, his general practitioner evokes a possible depression linked to his intense pace of work. “I was prescribed antidepressants, I was sent to see a psychiatrist. However, deep down, I knew that was not that. I felt slowed down, as if my brain no longer worked as before. »»

This erroneous diagnosis leads Emmanuelle to be placed on sick leave for burnout. Symptoms worsen over the years, up to a striking event in 2017: his right hand suddenly becomes inert. “It was too much symptom. My doctor finally prescribed an MRI, and there everything collapsed. »»

"My brain no longer worked as before"

Read also >> Androcur: an association of victims of the drug, used against endometriosis, complaints

An icing diagnosis: five brain tumors

The results of the MRI are final: Emmanuelle has five meningiomas, including a bulky tumor in the size of an orange. These tumors, although benign, compress his brain and explain his symptoms. The neurosurgeon is formal: these meningiomas are directly linked to prolonged use of Androcur. "When he told me that my treatment was responsible, I was amazed. How could a drug prescribed by professionals cause this? »»

The shock is immense, both physically and psychologically. “I had taken this medication for years, and no one had ever told me about this risk. But the diagnosis is only the beginning of a new test: one of the tumors is too large and requires an urgent operation, carried out in October 2017. "I was so afraid. I imagined my open skull, the possible consequences ... It all seemed unreal to me. »»

After the intervention, rehabilitation promises to be long. “I couldn't speak properly. For months, I was aphasic. Each word was a mountain to climb. She spent a year and a half in intensive rehabilitation to find a functional word. But she knows she will never be the same again. "I tire quickly. I cannot speak several hours in a row without my voice flanche. I have to take constant breaks to recover. »»

This intervention marks a turning point in Emmanuelle's life. The neurological sequelae prevents her from resuming her career as a financial consultant and she must take an early retirement for disability at only 55 years. “It was an immense loss, both financial and personal. »»

"No one had ever told me about this risk"

The birth of Amavea: never to be alone again

In 2018, while she is still in rehabilitation, Emmanuelle discovers that an ANSM study confirms the link between Androcur and meningiomas. “I understood that I was not alone. Other women lived the same. However, she quickly notes the silence of victims often disoriented.

Determined to act, she contacted Irene Frachon, famous for her fight against the Mediator. The whistleblower encourages her to create an association and structure her fight. What Emmanuelle does in January 2019, with Amavea, an association dedicated to the victims of risky progestoges. “We are there to inform, support and defend these women. They should not go through it alone. »»

Since its creation, the collective has welcomed more than 1,100 members, women and families faced with meningiomas and other serious side effects of progestins. The association acts on three fronts: information to potential victims, support - whether medical or legal - and lobbying to expand the surveillance of progestins.

Amavea also revealed the extent of prescriptions outside the marketing authorization, a key factor in this scandal. “The progestins were prescribed at more than 85 % out of AMM, especially for endometriosis. These prescriptions were not justified and exposed women to risks they were unaware. »»

A complaint to understand and act

In November 2024, after years of work, Amavea filed a complaint against X with the Paris court. This complaint, carried by lawyer Charles-Joseph Oudin, specialist in health scandals, target of serious accusations: "administration of harmful substance", "involuntary attack on the integrity of the person", and "aggravated deception".

For Emmanuelle, this action is not only a quest for justice: it is a desire to understand the faults of the system. “We want to know why patients were not informed earlier. Why outdoor prescriptions continued despite the alerts, and why the health authorities and the laboratories took so long to act. »»

Despite pressures - notably of certain gynecologists reluctant to recognize their wrongs - Emmanuelle remains inflexible. “Each testimony that I receive reminds me of why I do this. Some women have seen their lives switch to this lack of information. This fight is trying, but essential. And to conclude. You have the right to know. Ask your doctors, demand answers. And above all, you are not alone. Together, we are stronger. »»