For almost fifteen years, Emmanuelle Mignaton, 56, former financial analyst who lives today in Normandy, took this treatment to treat her endometriosis. She is the founder of the association of victims of meningiomas due to drugs (AMAVEA) and has filed a legal action against the Bayer laboratories. She testifies for "L'Obs":

« On m’a diagnostiqué une endométriose [maladie gynécologique qui se manifeste par une prolifération douloureuse des tissus de l’endomètre, NDLR] en 2003. J’avais 39 ans. Avant cela, je ne prenais pas tellement de médicaments. Je ne bois pas, ne fume pas, j’ai toujours eu conscience qu’il fallait prendre soin de son corps pour qu’il fonctionne bien. J’étais analyste financière à la Banque de France, je gagnais bien ma vie.

Gynecologists tinkered

Pendant quelques mois, on m’a fait des injections de Décapéptyl [médicament qui supprime la synthèse des œstrogènes dans les ovaires], puis un professeur de gynécologie m’a prescrit de l’Androcur [dérivé de la progestérone, lire ci-dessous]. Par la suite, ce sont deux autres spécialistes qui ont renouvelé ce traitement, car j’ai toujours refusé d’être suivie par un généraliste pour ma maladie. Par moments, j’avais l’impression que les gynécologues bricolaient, ils me passaient sous Lutéran [un autre progestatif] quand l’Androcur ne faisait plus effet.

Je me souviens de mon dernier rendez-vous avec le professeur qui me suivait alors, en 2016. Je lui ai demandé : « Je prends des hormones à haute dose depuis longtemps, il n’y a pas de risques ? » Il m’a répondu : « Non, et on ne change pas un traitement qui marche. » L’année d’après, j’ai commencé à avoir des problèmes neurologiques qui n’ont pas été identifiés comme tels au départ. J’avais d’atroces maux de tête, comme si une pression s’exerçait à l’intérieur de mon crâne. J’étais extrêmement fatiguée, l’une de mes jambes ne me portait plus. Pour mon généraliste, il n’y avait pas lieu de s’inquiéter : « C’est normal, vous travaillez, vous avez des enfants, faites du sport. »

A tumor the size of an orange

Things dragged like that until the summer of 2017. My right hand was closed anymore, she was inert. One side of my mouth was paralyzed, as if I had undergone dental anesthesia. I was finally made to pass a brain MRI and there, the doctors discovered that I had five meningiomas, benign tumors that develop on the brain envelopes. One of them was the size of an orange!

On m’a conseillé d’aller me faire opérer à Paris, car l’hôpital de Caen ne pouvait pas pratiquer ce type d’opération. Je me suis donc rendue à l’hôpital Saint-Anne, où le neurochirurgien qui m’a prise en charge m’a demandé quel traitement je prenais. Quand je lui ai dit que j’étais sous Androcur, il m’a tout de suite répondu : « Eh bien c’est à cause de cela que vous avez des tumeurs. »

At the time, I did not strike, it was secondary information, I did not believe it. I did not even go to do research on the internet. For me, the urgency was the operation, because I may have already undergone two cesareans and a removal of the cysts, to have the skull opened, it is not nothing! I was removed the biggest tumor in 2017. The surgeon did not want to remove the others, because the operation was too risky.

"I could no longer speak or write"

After the intervention, they left me intubated for a few hours when I was aware. The feeling of having a machine that breathes for oneself is awful.

Je me suis réveillée aphasique, avec tout le côté droit paralysé. Je ne pouvais ni parler ni écrire. J’ai ressenti une immense solitude à l’hôpital. Je me suis beaucoup retrouvée dans la description qu’en fait Philippe Lançon dans son livre « le Lambeau ». Si j’avais besoin de quelque chose, je n’avais aucun moyen de communiquer. Mon fils est arrivé cinq jours après, il essayait de me faire prononcer les premières syllabes des mots. Je n’avais pas été lavée depuis l’intervention, j’ai réussi à le lui faire comprendre, en sortant des sons que je ne maîtrisais pas. J’ai dû faire de la rééducation orthophonique. L’opération m’avait aussi abîmé la mâchoire que j’avais du mal à ouvrir.

J’ai récupéré l’usage de ma main au bout de deux mois. J’ai mis sept mois à reparler. Ce n’était pas un vrai locked-in syndrome, mais moralement, je souffrais beaucoup.

Six mois après l’intervention, j’ai revu mon neurochirurgien. Je ne parlais pas encore, il m’a donc demandé d’écrire mes questions. « Êtes-vous vraiment sûr que les tumeurs sont dues à mon traitement ? A quel pourcentage ? » Il m’a regardé droit dans les yeux et m’a dit « à 100 % ». C’est là que j’ai commencé à sonder internet. L’ANSM [Agence nationale de Sécurité du Médicament] n’avait pas encore émis d’alerte. J’étais très en colère.

In an attempt to obtain answers, I wrote to Endofrance, an association of patients to which I have adhered for years, to the various gynecologists who had followed me. Endofrance told me that if I wanted to be a whistleblower, it was my business, not theirs.

I sent emails to newspapers to ask if they were aware of what was going on, I never had any response.

Women operated every week

The only gynecologist who answered me is the last one I saw, in 2016. He explained to me that he knew there were undesirable effects, but thought they were so rare that there was no risk. He apologized, he hoped I was going to get out because he said, many did not survive!

In January 2019, I decided to found AMAVEA, the association of victims of meningiomas due to medicines, which was approved this summer by the Ministry of Health.

According to a study by ANSM, there are 500 to have suffered from tumors because of Androcur. But I am convinced that we are much more numerous than that. Neurosurgeons called me to tell me that they operated women who had had this problem every week!

I have four tumors left in my skull. One of them put pressure on my optic nerve, but since I no longer took Androcur, she regressed. My neurosurgeon has decided to leave them as long as they bother me, to avoid another very heavy operation. Some women died. Others have made strokes. Those out of the way have their lives completely changed. Many have divorced. They can no longer work full time.

"It's not cancer", but ...

I was a financial analyst, which implies having the brain sharp, I had to retire early because my cognitive disorders were too important. I now receive a pension of less than half of my old salary. Admittedly, it is not cancer, as the former Minister of Health had underlined without tactless. But our quality of life is very degraded.

Affected women have an average of between 40 and 50 years old. The undesirable effects can appear after six months of taking Androcur. The longer we take it, the more you have a risk of developing one or more meningiomas. But we do not yet know why some women make tumors and others not. I am one of the complainants who have filed an appeal against the Bayer laboratory.

I would have liked to have a choice. If I had known that there were such important adverse effects, I would have insisted for having a ablation of the uterus and the ovaries, which would have avoided the taking of Androcur.

The Androcur has not been prohibited for sale in France, which in personal purposes I regret. In the association, we were not all of the same opinion, but I realize today that a prohibition would have been a strong message, especially since certain countries have chosen not to market this medication, whose therapeutic indications are very limited. There are therefore interests that escape me. In any case, they are clearly not those of patients. »»

Interview by Bérénice Rocfort-Giovanni

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