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Anyone Taking Progesterone-only Birth Control?
A MyEndometriosisTeam Member asked a question 💭

My gynecologist gave me a prescription of progesterone-only pills called Nogest, 5mg to contain my endometriosis. She said there was no side effects since it was not the estrogen type but I googled progesterone myself and it seems it also carries cancer risks.

Is it okay to just take the pill EVERY OTHER DAY if my goal is to just stop the period (not prevent pregnancy)? Has anyone ever experimented with dosage like this before? I just think it's not safe to have too much progesterone in my… read more

posted July 11, 2020
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A MyEndometriosisTeam Member

I just looked Nogest up and it's the same medication (nomegestrol acetate) that has been causing a big scandal here in France for months. Women who took it could get meningiomas (meninges tumors). I don't want to scare you or anything, I just want to make sure you're taking this medication with informed consent. I'm sorry you weren't told about the tumor risks... It should be your doctor's duty.
I actually took a pill with cyproterone acetate and estradiol for a few years and that pill also ended up causing a scandal related to meningiomas and is not sold anymore here. No doctor ever told me about meningiomas and I started taking it when I was only 17. My experience with it went more or less fine, but I did develop breast tumors which were not cancerous. I can't be 100% sure it's because of that medication but the tumors developped when I started taking it. I'm now taking Drospirenone, which is another Progestin-only pill. I really hope it doesn't give major health risks.
I'd suggest seeing your gyn again and telling them your worries. Hopefully they can prescribe you another medication or closely watch for meningiomas.
On a side note, my doctor told me that I most probably won't get a period on Drospirenone, even if I take the placebo pills. Your pill is different of course but you may still not get a period even though you take placebo pills/wait a few days between packs.

posted July 12, 2020
A MyEndometriosisTeam Member

I used to take this and if i missed a dose i would have random spotting. :(

posted July 11, 2020
A MyEndometriosisTeam Member

BTW, I just found this. "Risk of brain tumors confirmed for progestin-only drugs...Women treated for more than six months with these molecules (nomegestrol acetate or chlormadinone) are exposed to a risk of developing this tumor multiplied by 3.3 and 3.4 respectively, compared to women not treated with these drugs, according to study.

The risk is multiplied by 12.5 from 5 years of treatment with Lutenyl and its generics and by 7 from 3.5 years for Lutéran and its generics."
Pretty alarming news.
https://www.ouest-france.fr/sante/risque-de-tum...(Phone number can only be seen by the question and answer creators)

posted October 5, 2020
A MyEndometriosisTeam Member

Sorry for the late reply. I simply forgot. My bad.

I think what I had is migraine attacks. It usually lasts at least 48 hours. It doesn't take place after I take the pill, but rather something seems to trigger them. It can be lack of sleep or strong winds. I have had two attacks in a month and it drove me crazy.

Has anyone suggested you to do a hysterectomy as a permanent solution? My gyn and I are against it but I heard it's quite common for women to do it, though usually in their older years (I am still in my late 30s). One friend who used to suffer from serious endo told me it's the best thing she ever did, but I am not fully convinced because 1) my endo is not as serious as hers 2) I am very worried about the side effects of such an invasive and irreversible surgery.

I guess all we can do now is keep taking the bloody pills :(

posted October 5, 2020
A MyEndometriosisTeam Member

You're welcome. I'm so saddened and infuriated at the lack of info we get when doctors prescribes us treatments.
I'm sorry you weren't heard by your doctor. I understand your frustration. I've had bad headaches too since I take Drospirenone, each time it's about 1 hour after taking the pill. They go away quickly though. Are your headaches like that too ? Now I'm also worried it's because we take Progestin. Hopefully your gyn listens to you and helps you.

My gyn also basically told me I need to take birth control (either a pill or IUD) long term not to have my period. Sadly I've read the pill just basically masks endometriosis symptoms. But I think I'll keep taking it until I can get a nice excision surgery by a skilled doctor.

posted July 13, 2020 (edited)

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