An endocrinologist prescribed Androcur (combined with Progynova) for the first time in 1989, when I was 17, following hormonal tests. I had suffered from severe acne since I was about 11 years old. No dermatological treatment seemed to clear up this acne, which made me very self-conscious. At 17, my hair had also started falling out in clumps.

The treatment worked well. Over the years, it consisted of one Androcur tablet for 20 days each month, combined with one Provames tablet, followed by an 8-day break, during which I very rarely had my period. This didn't bother me, given that my cycles were very irregular and my periods painful before this treatment.

A little acne still persisted, and when I was a young adult, I was even prescribed Diane 35 along with a little Androcur, then an increased dosage of Androcur (up to one and a half tablets per day)…. !!!

This endocrinologist treated me for a few years, and then throughout my student years and the many moves I made as an adult, Androcur continued to be prescribed and renewed (from 1989 to 2018!) by other endocrinologists, dermatologists, general practitioners, gynecologists, and so on. I was sometimes asked why this medication had been prescribed to me in the first place, but no one ever warned me about any potential dangers (meningioma or otherwise) . During all those years, only one endocrinologist expressed reservations at one point: I was also using it as a contraceptive, and Androcur hadn't received marketing authorization for contraception, so she had reservations about it ( had it received authorization for acne…?!).

After my pregnancy, at 33, I wanted a more "classic" birth control pill to try and stop taking Androcur. After all, my hormones were supposed to be more stable. But I couldn't tolerate any of the different pills I tried. They all had severe side effects for me.

My old acne has returned, and in desperation, I've decided to start taking the infamous Androcur again. However, I'm aware that it's a heavy treatment, and I have many questions about it. It's worth noting that I developed migraines around the age of 30.

In 2013, my general practitioner prescribed a CT scan due to migraines that had become continuous. "Normal examination".

In 2016, I developed a latent depression, certainly exacerbated by several difficult life events, but I wondered if it wasn't being fueled by this medication. I confided in my gynecologist, who assured me that the depression had no connection to Androcur and that the drug was safe. I now know that a warning had been issued as early as 2008, not about an increased risk of depression, but about a significantly increased risk of developing a meningioma. I should have been informed then!

Despite the gynecologist's feigned reassurance, I remained doubtful and quite worried about the medication. I regularly searched online, asking myself questions… Until that day in September 2018, when I read online that Androcur could increase the risk of meningioma sevenfold with prolonged use! And I read about the cases and testimonies of several patients ! I had been taking it for almost thirty years !! I figured I couldn't possibly be immune, and that this explained my headaches. So I went to my general practitioner (who had also renewed my prescriptions for Androcur and Provames multiple times). She wasn't yet aware of this information about meningiomas (!), but she agreed to prescribe a CT scan to reassure me, stating that she didn't believe I had meningiomas at all, that there would have been other signs, in her opinion…

Still not at ease, the wait for the appointment at the radiology center begins. Of course, you can't get an appointment overnight, and I have time to imagine the worst, picturing myself on extended sick leave, dependent, or even worse… I live alone with my son, and I'm filled with anxiety imagining an upcoming operation and its aftermath…

On the day of the scan, in October 2018, I had my CT scan and waited anxiously in the waiting room for my results when the receptionist called me in to collect payment and handed me the envelope containing my images. Thank you and goodbye. I thought to myself, "Great, if they're giving me the results like this, without the doctor giving me an oral report, it means the scan was good.". 

I still take out the sheet of paper with the written report, to read it in front of the radiology center. That's when I read "... localized frontal mass of the midline, suggestive in the context of a meningioma ..."

Why is it "evocative"? Is it a meningioma, yes or no?

I felt like I was seeing stars, with hot flashes… I went back to the receptionist and asked to see the doctor for an interpretation of my results. She told me that this doctor didn't usually see patients after an X-ray.

He came to see me a few moments later, reluctantly. "Evocative, does that mean I have a meningioma?" Indeed, he confirmed, "Yes!" No empathy whatsoever; I was just wasting his time. He quickly went back to his X-rays, without taking the time to reassure me. I left the center alone, feeling utterly devastated.

I just need to reassure myself with the fact that this meningioma seems quite small, and that it says on that famous scan report "no associated complications"..

Then begins a new period of stress, with x consultations, a return to the general practitioner who is completely taken aback, a recommendation to a neurosurgeon in a university hospital, waiting for appointments, also with the endocrinologist and the dermatologist to try to find alternative solutions for acne, because ANDROCUR HAS TO BE STOPPED.

The neurosurgeon I met at the end of October 2018 confirmed, thankfully, that surgery was not necessary. In my misfortune, the meningioma was small and "well-positioned." In his report, he confirmed that there was indeed a causal link between the growth of meningiomas in that area and taking Androcur, and therefore that stopping this treatment could lead to either stabilization or even sometimes a reduction in the size of the meningioma ( NB: during a follow-up appointment a year and a half later, he would tell me, however, that this meningioma can also grow slowly even after stopping the treatment ).

Without going into detail, I will specify that after this already difficult announcement and following a battery of blood hormone tests, some of which were abnormal, I then had a suspicion of a pituitary tumor, and new long weeks of anguish between different tests and this time an MRI (the pituitary tumor not being detectable by scan)... Finally this suspicion was not confirmed, and the mystery of the surge in my IGF1 level remains unsolved to this day.

Okay, stopping Androcur means no more contraception at all. So I'm going back to the gynecologist, the one who, a year ago, loudly and clearly stated that Androcur posed no risks whatsoever, neither depression nor anything else. I'll tell him about my experiences these past few months.

• He's not up-to-date on the latest news regarding Androcur (it seems I've had to act as an informant for the medical community twice now!!)
• He told me that in any case he does not prescribe this medication (it was still he who renewed it for me the previous times, assuring me that there was no danger!!).
• He gave me the names of two pills that could potentially be prescribed to me, which I would need to have approved by my neurosurgeon

€60, thank you and goodbye. Or rather, farewell. I found another gynecologist, kind and attentive, who confirmed, as I already suspected, that it was best for me to completely forget about the pill and any medication containing hormones. He doesn't endorse the names of the two pills mentioned by his colleague at all.

I learned, of course, that an "alert" had been raised as early as 2008 by Mr. Froelich. Nothing was done during all those years . A true public health scandal, even if it's being covered up by the authorities and pharmaceutical companies. Once again, the lure of profit has prevailed over the health of thousands of women.

Although angry, I really consider myself " lucky " because given the number of years I ingested this molecule, I'm doing well compared to all the women who have developed tumors, often multiple and much larger, and undergone operations, following shorter periods of taking the drug than mine.

To date, I have annual MRI scans. So far, the meningioma hasn't changed. It's my acne that has come back with a vengeance. Even though I'm approaching fifty, nothing I do helps, it's still there… I hide it under makeup and my long hair…

After stopping Androcur, the migraines that were ruining my life disappeared… This also allowed me to stop taking triptans…

Thank you for reading. I am aware of how fortunate I am to have been so little affected, despite taking this "medication" for almost 30 years. I think every day of the women who have been less lucky than me. Thank you to your association.

Find our other articles here