C’est après mon opération en juin 2018, que j’ai appris le lien avec Androcur. Cet été là, quand on a commencé à en parler médiatiquement. Je suis donc votre association depuis le début.

Thank you for your site because I found a lot of answers there that the doctors could not bring me.

It's been a long time since I want to share my story, but as it is a long story as for all in the end, I did not know where to start. So here I am going to go in order.

J’ai commencé à prendre Androcur en 2007, un demi comprimé par jour, 21 jours sur 28.

For acne at the beginning, then I continued it because it also had a contraceptive effect.

I tried other pills but I always came back to Androcur because that was what I was supporting best.

My gynecologist, against and against all, persisted in saying, that it was a very good pill, moreover less dangerous than other pills (less risk of developing breast cancers for example ...).

J’avais à peine 20 ans quand j’ai commencé à prendre Androcur, j’étais à l’université, et c’est à cette période que mes maux de tête ont commencé.

We have never made the link with Androcur. I was told that they were migraines. I thought I was "little nature", because indeed, if I had a stressed week (with partials for example ...), if I was too tired, if I loupe a meal ... Arrived on Saturday, I spent it in bed because my headache came with nausea, and I spent the day in bed and vomiting. Unable to do anything. Even a glass of water made me vomit, and so I could not take any tablet so that the headache pass.

So yes it looked like migraines. But to diagnose a migraine you have to make a scanner, an MRI right? To me no, I have never been prescribed. It is not for lack of having mentioned it to the general practitioner, to the gynecologist, to the endocrinologist (because I also underwent a partial removal of the Tyroid in 2012) and nobody took my headache seriously, supposedly "migraines".

Even my general practitioner, who it is true always told me that Androcur should not be taken as a contraceptive, but he has never mentioned the risk of a tumor, or even no risk.

Je continuais à croire ma gynécologue, qui était très convaincante, « cela fait 30 ans que je prescrit Androcur moi et ma collègue du cabinet, c’est une très bonne pilule, pas une grossesse en 30 ans…il ne faut pas écouter les généralistes, c’est moi qu’il faut écouter. » Voila ce que j’ai entendu pendant 10 ans.

En 2014, je suis allée voir une autre gynécologue pour avoir son avis sur Androcur et mes maux de tête. Elle a confirmé que Androcur était une très bonne pilule, et qu’elle le prescrivait également depuis longtemps. Et concernant les maux de tête, qualifiés automatiquement de migraine, pouvaient être dû aux chutes d’hormones, quand je fais un arrêt de pilule, ou bien le chocolat, le vin blanc, etc. donc à moi d’adapter mon mode de vie. Puis elle me propose « d’empêcher » ces migraines en prenant Androcur en continu, c’est à dire, sans semaine d’arrêt pour éviter les maux de têtes (supposés dus au chute d’hormones lors de la semaine d’arrêt). Puis au lieu de me prescrire un demi-comprimé, elle me prescrit un comprimé par jour à prendre tous les jours pendant un an.

A year later (2015), I go back to see my gynecologist, I tell her about the prescription of her sister, and she is outraged to know that she prescribed a tablet per day constantly for a year, "it's too much! "And then she replies that" if there are headache you have to look for where the problem comes from and not cover it! " What is true, but she did nothing about it, she continued to prescribe Androcur, half a tablet 21 days a week.

Between 2014 and 2018 I lived in London, and I consulted a general practitioner there, who could not prescribe me Androcur because he was not authorized in England (I understood later why). So I continued to see my gynecologist every time I returned to France for the prescription of Androcur because it is the only pill that I supported, and still not informed of the risks of course. But on the other hand my headache persisted.

The last time I saw my gynecologist was in April 2018.

From January 2018, I started to have dizziness. At work, sitting, during the day, it had never happened to me before. I thought it could come from my thyroid treatment that I had just changed. So I made a bloody, signal to my endocrinologist in France, she tells me that no thyroid and TSH are normal.

Puis dans les mois qui suivent, je ressens de plus en plus de fatigue, déprime, agacement, aucune motivation, je venais d’avoir 30 ans mais j’étais las, déprimée. J’en parlais autour de moi, à Londres, tout le monde est un peu déprimé. Alors il faut peut être que je change quelque chose à ma vie, c’est le travail, les relations, la colloc, Londres, la vie… Au travail, je suis de plus en plus désorganisée, je n’arrive pas à avancer, je suis de plus en plus en retard le matin, mais genre, 1 heure de retard.

More and more absences because more and more frequent headaches, and when my "migraines" came I could not move from bed, I spent the day vomiting, without being able to take any tablet so that it passes. I just had to stay in bed, try to sleep and wait for it to pass.

Fortunately I had very understanding superiors, which tried to know what was going on and see if we could do something. Clearly I was doing a depression, and even my chief wanted to help me.

On June 7, 2018, I will see my general practitioner in London to tell him about all of this: he confirms it is a depression, he even says "You know at 30 you are no longer very young, it's normal to be tired". He then turned me to therapy, a shrink.

Une semaine plus tard, le 14 juin 2018, 5h du matin, j’ouvre les yeux et je vois des ambulanciers dans ma chambre: je venais de faire une crise d’épilepsie dans mon sommeil. C’est mon compagnon qui s’était réveillé dans la nuit et qui s’en est rendu compte. On m’emmène alors aux urgences où on me fait passer un scanner. Le verdict tombe: j’ai une masse de la taille d’une pêche (6.8cm), qui compresse contre le lobe frontal droit, mais on ne sait pas encore si c’est malin ou bénin. Il faut alors que je sois opérée.

On me transfère dans un autre hôpital pour que je sois opérée une semaine plus tard. Je ne comprends toujours pas ce qui m’arrive. Pour moi c’est une tumeur, ok donc enlevez-moi ça que je rentre chez moi. Je réalisais pas ce qui m’arrivait du tout. On m’explique plusieurs fois (car avec la crise d’épilepsie, mon cerveau n’enregistrait pas tout, j’étais assommée) que c’est une tumeur dite méningiome, qui grossit depuis des années. « Des années » !

I was in London, they do not know Androcur, so they did not link. But I stopped it myself the day after the operation! (without knowing the link with the meningioma that we had just taken away from me.)

It was by returning to France 2-3 weeks later that we realized that it was Androcur. That summer, 2018, this is where we started talking about it. At a few months old (in April 2018 when I saw my gynecologist), we would have heard of it, I might have been able to make the link with all my symptoms, because they were there: frequent headache, dizziness, fatigue, depression ...

Barely a month after the first operation, I had to be reopened urgently due to post-operative infection: the scar disunited, the frontal bone was infected, it had to be removed.

So I ended up with one less frontal bone, and I had a lot of difficulty in healing.

10 months later, I undergo a new operation: cranioplasty to replace the missing bone, I am then posed a prosthesis.

I know that I was also very lucky, it was operable, they withdrew everything, and especially it was not cancer.

After all this, it is the psychological that must be rebuilt, and I find that at this level I did not have enough medical support. Of course the family and friends were there, but the return to professional activity was a little chaotic, and difficult to assess, if it was me, the disease, the context, the return too quickly ...

Today 32 years old, and I'm still looking for myself. It was already not easy but with a brain that rebuilds the questions merge in my head. I resumed a professional activity barely 1 year after the last operation.

I can see that I am not up to my "Bac+5 and my 31 years ..."

Mais j’ai l’impression que je suis toute seule pour comprendre comment remettre mon cerveau sur « pied ».
Je n’ai pas eu beaucoup de soutien médical en terme de rééducation.

From myself I asked to do a neuro-psychological assessment, and an EEG to see if it was normal that I could not concentrate at work. I don't remember anything, I have to repeat things to me several times for me to understand. I feel overwhelmed.

But I have read on different testimonies that indeed, it can take time. I do what it takes, at least I try.

When I started to take Androcur in 2007-2008, studies began to establish the link between this medication and tumors, so why are we there today 10 years later?

How many drugs are prescribed today with so little knowledge or communication on their side effects and heavy consequences?

How to trust doctors?

Our symptoms are not taken serious enough, not early enough. Headache is not nothing!

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