It was after my operation in June 2018, that I learned the link with Androcur. This summer, when we started talking about it in a media. So I have been your association from the start.

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.

I started to take Androcur in 2007, half a tablet per day, 21 days out of 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 ...).

I was barely 20 years old when I started to take Androcur, I was at university , and it was during this period that my headache started.

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 the partials for example ...), if I was too tired, if I loupe a meal ... Arrived on Saturday, I spent it 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.

I continued to believe my gynecologist, who was very convincing, “I have been prescribing Androcur for 30 years and my colleague from the cabinet, it is a very good pill, not a pregnancy in 30 years… You should not listen to the general practitioners, it is me that you have to listen .” This is what I heard for 10 years.

In 2014, I went to see another gynecologist to get his opinion on Androcur and my headache. She confirmed that Androcur was a very good pill, and that she also prescribed him for a long time. And concerning the headache, automatically qualified as migraine, could be due to hormone falls, when I stop pill, or chocolate, white wine, etc. So it's up to me to adapt my lifestyle. Then she offers me “to prevent” these migraines by taking Androcur continuously , that is to say, without a stop week to avoid headaches (supposed due to the fall of hormones during the stop week). Then instead of prescribing half a compress, she prescribes one tablet per day to take every day for a year.

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 headaches you have to look for the problem where the problem comes from and not cover it!" Which 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.

Then in the following months, I feel more and more fatigue, depression, annoyance, no motivation, I had just been 30 years old but I was tired, depressed. I spoke around me, in London, everyone is a little depressed. So maybe I have to change something in my life, it's work, relationships, colloc, london, life ... At work, I am more and more disorganized, I can't move forward, I am increasingly late in the morning, but like, 1 hour late.

More and more absences because the headache increasingly frequent, 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.

A week later, on June 14, 2018, 5 a.m., I open my eyes and I see paramedics in my room: I had just had an epilepsy crisis in my Sommei l. It was my companion who woke up in the night and who realized it. They then take me to the emergency room where I was made to spend a scanner. The verdict falls: I have a mass of the size of a fishing (6.8cm), which compresses against the right frontal lobe, but it is not yet known if it is smart or benign. I must then be operated on.

I am transferred to another hospital so that I was operated on a week later. I still don't understand what happens to me. For me it's a tumor, ok so remove me that I come home. I didn't realize what happened to me at all. I am explained several times (because with the epilepsy crisis, my brain did not record everything, I was knocked out) that it was a so -called meningioma , which has been growing for years. “Years”!

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…”

But I have the impression that I am all alone to understand how to put my brain back on “foot”.
I did not have much medical support in terms of rehabilitation.

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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