Une endocrinologue m’a prescrit, suite à des tests hormonaux, de l’Androcur (associé à Progynova) pour la première fois en 1989, alors que j’avais 17 ans. Je souffrais d’acné sévère depuis l’âge de 11 ans environ. Aucun traitement dermatologique ne venait à bout de cette acné qui me complexait. A 17 ans, mes cheveux s’étaient de plus mis à tomber par poignées entières.

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)…. !!!

Cette endocrinologue m’a suivi quelques années, puis au cours de ma vie d’étudiante et au fil des déménagements qui ont parcouru ma vie d’adulte, l’Androcur a continué de m’être prescrit et renouvelé (donc de 1989 à 2018 !) par d’autres endocrinologues, dermatologues, généralistes, gynécologues…. On me demandait parfois pourquoi ce médicament m’avait été prescrit à l’origine, mais personne ne m’a jamais alertée contre un potentiel danger (de méningiome ou autre). Durant toutes ces années, une seule endocrinologue s’est montrée réticente à un moment donné : je m’en servais aussi comme contraceptif, et Androcur n’avait pas eu d’autorisation de mise sur le marché pour la contraception, elle émettait donc des réserves à ce sujet (en avait-il obtenu une pour l’acné …?!!).

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!

Malgré la pseudo assurance du gynécologue, je reste dubitative et assez inquiète sur le médicament. Je regarde régulièrement sur internet, m’interroge… Jusqu’à ce jour de septembre 2018, où je lis sur internet que l’Androcur multiplierait le risque de méningiome par 7 en cas de risque prolongée ! et le cas et témoignage de plusieurs patientes ! Cela fait alors pas loin de trente ans que je le prends !! J’imagine bien alors que je ne peux pas être épargnée, et que mes maux de tête s’expliquent ainsi. Je me rends alors chez mon médecin généraliste (qui elle aussi m’avait renouvellé l’Androcur et le Provames à de multiples reprises). Elle n’est pas encore au courant de cette information de méningiome ( !), mais elle accepte de me prescrire un scanner pour me rassurer, affirmant qu’elle ne croit pas du tout que j’ai des méningiomes, qu’il y aurait eu d’autres signes selon elle…

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.". 

Je sors quand même la feuille du compte rendu écrit, pour la lire devant la porte du centre de radiologie. C’est alors que je lis « …masse frontale localisée de la ligne médiane, évocatrice dans le contexte d’un méningiome… »

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"..

Commence alors une nouvelle période de stress, avec x consultations, retour chez la généraliste qui tombe des nues, recommandation à un neurochirurgien en CHU, attente des rdv, aussi chez l’endocrino et la dermato pour essayer de trouver des solutions alternatives pour l’acné, car ARRET OBLIGATOIRE DE L’ANDROCUR.

Le neurochirurgien rencontré fin octobre 2018 confirme, ouf, qu’il n’est pas utile de prévoir une intervention. Dans mon malheur, le méningiome est petit et « bien situé ». Sur son compte-rendu, il confirme qu’il y a bien un lien de causalité entre la croissance des méningiomes à cet endroit et la prise d’Androcur, et donc que l’arrêt de ce traitement peut entraîner soit une stabilisation, soit même parfois une régression du volume de ce méningiome (NB : lors d’une future consultation un an et demi après, il me dira pourtant que ce méningiome peut aussi grossir lentement alors que le traitement est arrêté).

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.

J’ai bien sûr appris qu’une « alerte » avait été lancée dès 2008 par M. Froelich. Rien n’a été fait pendant toutes ces années. Un vrai scandale sanitaire, même s’il est étouffé par les autorités et les labos. Une fois encore, l’appât du gain a prévalu sur la santé de milliers de femmes.

Certes en colère, je m’estime vraiment « chanceuse » car vu le nombre d’années pendant lesquelles j’ai ingurgité cette molécule, je m’en sors bien par rapport à toutes les femmes qui ont développé des tumeurs, souvent multiples et beaucoup plus grosses, et subi des opérations, suite à des prises du médicament pourtant moins prolongées que la mienne.

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.

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