In 2003, Emmanuelle was discovered with endometriosis, a chronic disease that affected one in ten women. At that time, she was 39 years old and wanted to have the uterus and the ovaries withdrawn. Her doctor refused saying that she was too young and that she might want other children later. He was subsequently prescribed him for 14 years from the Androcur, a medication to relieve his pain.

When she returned to see her doctor to talk to her about symptoms she found bizarre, like her leg which no longer held her, the latter told her to play sports, to build muscle. She thought he was certainly right. It was in August 2017, on Sunday morning, that Emmanuelle noticed that her right hand no longer closed. She was in pain, but her hand remained inert.

Elle est donc allée voir son médecin et se souvient d’une phrase en particulier qui l’a marqué : « Faites un effort, faites un effort pour refermer la main. » Elle ne pouvait pas. On lui a donc fait passer un IRM, par précaution. Elle a eu le choc de voir une tumeur grosse comme une orange, une deuxième de la taille d’une prune et trois autres petites de la taille d’une cerise dans son cerveau.

Elle a pris un rendez-vous en urgence avec un neurochirurgien parisien, qui lui a dit : « Tout ce que vous avez dans la tête est dû au traitement que vous avez pris contre l’endométriose. » C’est la douche froide pour Emmanuelle, qui lui demande à combien de pourcentage il en était sûr. Il lui a répondu « à 100 % ». Très en colère, il était inconcevable pour elle que ses tumeurs soient dues au traitement et qu’aucun médecin ne l’ait prévenue.

Emmanuelle was operated a few weeks later, in October 2017. The biggest tumor was removed, but the risk was too large to remove the other four. When she woke up, she found herself hemiplegic and aphasic on the right side of her body. It took a few weeks to find the entire movements, and almost 6 months to speak. She had to do speech therapy rehabilitation. Even today, it is difficult for her to speak more than 2, 3 hours a day.

En janvier 2019, elle fonde l’association Amavea, destinée au soutien des victimes de méningiomes dus aux médicaments et autres progestatifs. Elle n’est pas un cas isolé. Près de 500 victimes ont été identifiées au cours de ces dernières années, un chiffre très sous-estimé selon elle. Le lien de causalité entre l’apparition des méningiomes et des traitements Androcur, Lutéran et Lutényl a été établi dans le cadre d’une procédure judiciaire.

At the beginning of 2020, Emmanuelle began legal proceedings with her lawyers in order to obtain compensation for the prejudices suffered. Today, she lives with four brain tumors and fights to understand how hundreds of women can be in the same situation as it is.

Following this interview, we asked the Bayer laboratory, here is its response dated November 3, 2020:

“Meningioma cases have been reported on Androcur® (cyproterone acetate) in women and men. This risk is described in product information as the instructions, and healthcare professionals must prescribe drugs after an exhaustive assessment of profits and risks for each patient. This risk is continuously monitored, evaluated and communicated by Bayer to the health authorities.

The Committee for the Risk Assessment of Pharmacovigilance (PRAC) of the European Medicines Agency confirmed in February 2020 that the benefit/risk ratio of Androcur is considered favorable when used in accordance with marketing authorizations.

At Bayer, we take the safety of patients very seriously and permanently ensure the safety profile of our drugs to ensure that the information relating to the drugs that we provide health professionals and patients are reflection of the most recent scientific evidence. This commitment includes an in -depth and constant evaluation of scientific publications relating to our drugs. Bayer also regularly informed the regulatory authorities around the world of the arrival of new data concerning his drugs, and works with them to update the information instructions, if necessary.

Regarding legal proceedings, Bayer does not comment on current or future procedures. »»