Text written in June 2019, which is still relevant.
Thanks to Martin Winckler for having hosted on his blog: schooldessoignants.blogspot.com/

Meningiomas caused by Androcur: a patient tells and creates an association

Like most women, you don't know what a meningioma is.
Until August 2017, I did not know it either.

Like most women, you take the contraceptive pill, or a medication that reduces gynecological concerns, such as polycystic ovaries, excessive bleeding, which is also effective against acne or hirsutism.

And you have never been told about meningioma, a brain tumor, most often benign, and slow growth.
And you were not told that certain drugs have never been tested by the pharmaceutical laboratory which markets it for the pathologies for which you take these drugs.
I had never been told about it either. Never.

Who makes fun of the health of women?
Who thinks that serious adverse effects should not be said to women, poor brain -free creatures (but it is true that brain tumors greatly improve our capacities for reflection!)? Doctors, especially gynecologists, who knew the risk, but who said that it should be so rare that it was not worth saying it.

To tell you a little about my story, not the most terrible, but typical of what many women have experienced, and which has its share of sufferings which could have been avoided:

For years, I found myself slowed down, different. My body had changed, and my personality too. I have dragged bizarre symptoms, which have worsened over the years, for at least 8 years. I did not know that my cranial box housed 5 meningiomas, the biggest of which, like an orange to discover it, could have killed me. Do you image have something of the size of an orange in the head? And other smaller fruits: plum, cherries ...

I am one of the hundreds of people who, in France, were operated on with a meningioma and had taken Androcur for more than 5 years. A study by the CNAM released in 2018 has shown an over-risk to develop a meningioma when you take this medication for more than 6 months. And a very important risk when taking it over 5 years.

When I was received in September 2017 by the neurosurgeon who was going to operate me (yes, such a large meningiomal cannot regress enough to stop treatment, and it is too big for radiotherapy alone), he told me that my tumors were due to the medication; I didn't believe it.

I didn't believe it! How have 3 successive gynecology teachers have renewed, can they induce these kinds of consequences without my warning? Without anything, never, making me think that all my bizarre symptoms were due to this treatment?

It was unthinkable for me to have never been notified, or by associations I adored for endometriosis, or by any doctor. A non-fatal disease was treated by potentially fatal drugs, how was it possible? All drugs include risks, but those who take the contraceptive pill know them and they are mainly phlebitis or cardiovascular problems.

This medication stole me 10 years of my life, and rots me by its consequences on the days I have left.

My anger is immense in the face of the silence of those who knew and who have said nothing.
I wish all those who have been silent, out of stupidity, for the sake of career, what do I know, to live an operation of the brain. And then tell me if it was normal to be silent.

I would have liked not to have to undergo so much. Like the violence of the sentence of a gynecology teacher who told me, when I told him that I was very angry at not having been warned of this possible devastating adverse effect: "A drug is a benefit-risk. When you take your car, you have a risk of dying and yet you take it anyway. A drug is the same ”.

The major difference, I told him, is that I know when I take my car that I can die. There, no one told me anything.

And his final sentence: "I hope you get out of it".
Because sometimes we don't get by.

The aim of the association I created in January 2019, AMAVEA, association of victims of meningiomas due to drugs, is not to panic women, or to tell them that progestins are to be banned. No. Of course not. These drugs provide great services, for endometriosis for example, where it does not heal, but it allows you to live better.

But the information, what a hell! Inform and not infantilize women by hiding the truth from them. And the truth is simple: these treatments can induce brain tumors, certainly benign according to medical terminology, because not cancerous. But is everything that is non-cancerous is nevertheless benign? Is it benign to have his head opened? Is it benign to have lifetime consequences that prevent working? It is benign to be able to become the shadow of what we were, and to the extreme, to die?

I don't believe it. You have to be informed to be alert if neurological signs appear.
And the health authorities are already on alert for the androcur (Cyproterone acetate), since it will no longer be possible for a doctor to prescribe it without having the patient sign an information certificate, whom she will have to provide the pharmacy to have the delivery of the drug.
And before any prescription, a brain MRI will be necessary.

It remains to do the same for Luteran and Lotényl, and possibly for other progestins, if necessary.
The ANSM will start a major study as has been done for Androcur, but occasional studies already show that these other drugs sometimes induce meningiomas. It remains to be seen in what proportions.

Thank you to Martin Winckler for giving me the opportunity to explain and talk about the association created, with the same objective as Marine Martin, president of the APESAC association, on the problem of antiepileptic drugs, the best known of which is Dépakine: shed light on all the dysfunctions of our health and pharmacovigilance system. And in parallel, have an association to request compensation for the damage suffered.

Thank you to the neurosurgeon, Professor Johan Pallud, who allowed me, in every sense of the word, for "rebuilding me".

I am not a whistleblower. There are not this in this case, and the words are important, because journalists put this term on any person who protests a little.
But with the people with whom I founded the association, we are ready to answer questions and share our knowledge and experience. This is what an association of patients is used for, I think!

Note from May 20, 2020: I specified in this text a year ago, not being a whistleblower, and yet I was invited by Daniel Ibanez in November 2019 to the Book and Alert Fair. I have always told Daniel Ibanez that I was not a warning launcher in the sense that I heard her, and that I had simply done what I seemed to be my duty as a citizen at this moment T. He told me that it was exactly what he was looking for. So I went there. Report here

Find the other Amavea articles here