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":

“I was diagnosed with endometriosis [gynecological disease which manifests itself by a painful proliferation of the tissues of the endometrium, note] in 2003. I was 39 years old. Before that, I didn't take so many medicines. I do not drink, do not smoke, I have always been aware that it was necessary to take care of his body so that he works well. I was a financial analyst at the Banque de France, I had a good life.

Gynecologists tinkered

For a few months, I was made of decaptyl injections [medication which removes the synthesis of estrogen in the ovaries] , then a gynecology teacher prescribed androcur [derived from progesterone, read below]. Subsequently, two other specialists have renewed this treatment, because I have always refused to be followed by a general practitioner for my illness. At times, I had the impression that the gynecologists tinkered, they passed me under Luteran [another progestogen] when the Androcur no longer had an effect.

I remember my last appointment with the professor who followed me then, in 2016. I asked him: "I have been taking high doses hormones for a long time, there is no risk? " He replied, " No, and we don't change a treatment that works. The next year, I started to have neurological problems that were not identified as such at the start . I had atrocious headache, as if a pressure was exercised inside my skull. I was extremely tired, one of my legs no longer brought me. For my general practitioner, there was no need to worry: "It's normal, you work, you have children, play sports. »»

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!

I was advised to go to be operated in Paris, because the Caen hospital could not practice this type of operation. So I went to the Saint-Anne hospital, where the neurosurgeon who took care of me asked for what treatment I took. When I told him that I was on Androcur, he immediately replied: "Well, that is because of this that you have tumors. »»

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.

I woke up aphasic, with the whole straight side paralyzed. I could neither speak nor write. I felt a huge solitude in the hospital. I found myself a lot in the description that Philippe Lançon does in his book "Le Lambeau" . If I needed something, I had no way to communicate. My son arrived five days later, he tried to pronounce the first syllables of words. I had not been washed since the intervention, I managed to make him understand, leaving the sounds that I did not master. I had to do speech therapy rehabilitation. The operation also damaged my jaw that I had trouble opening.

I recovered the use of my hand after two months. I took seven months to talk about it. It was not a real locked-in syndrome , but morally, I suffered a lot.

Six months after the intervention, I saw my neurosurgeon again. I did not speak yet, so he asked me to write my questions. "Are you really sure that tumors are due to my treatment?" What percentage? He looked me straight in the eyes and said "100 % " . This is where I started to probe the internet. The ANSM [National Agency for Medicines Safety] had not yet expressed alert. I was very angry.

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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