Has anyone been prescribed norethisterone for their Endo?

I know it's normally prescribed short term to hold off your period for a large event eg holiday. But my gynae wants me to take it every day for 2 months 5mg 2x daily for my pain. I do not get irrregular periods nor flooding. Just constant pain. I was wondering if any of you ladies have used it and what were your side effects.

7 Replies

oldestnewest
  • I think Norethisterone has largely gone out of fashion as a treatment for endo, because there are other meds that will not give patients oily skin and acne, or not as much. It can also cause unwanted hair growth where you _don't_ want hair, and hair loss where you _do_ want hair. But not always, and if that is not too much of an issue, it can be quite effective. I hope it works for you, and at the lower dosage you are getting side effects will probably be less.

    I used it myself, 3 x 5mg per day for about a year or so. (Writing here on this forum makes me realize I probably tried an amazing number of treatments). I felt pretty good on norethisterone (Primolut), no pain, some light breakthrough bleeding but not often, some acne and oily skin. There also was an increase in appetite, I struggled with that to avoid weight gain.

    These days doctors here (.nl) seem to favor medroxyprogesterone or Provera, which is in the same class, but does not convert to a little bit of testosterone like norethisterone does. For me a bit of testosterone works out well, but it depends on your own hormonal balance how it works out of course.

  • I had norethisterone for quite some time in my 20s over 20 years ago - it was a faff because you do have to remember to religiously take the blessed things otherwise you can trigger a period to start a day or two after you skip doses accidentaly. So in that respect it is not the ideal solution. I didn't get any troubling side effects - but then we are all different and react to hormone meds in our own unique ways so you won't know till you try it for yourself.

    If it does give you problems there are alternatives, so it's not the end of the road if it doesn't suit you - but it is certainly one option worth trying.

    I was not diagnosed with endo back then - it was taken to stop periods when it was inconvenient to have a period. I did have endo symtoms back then but it would take over 20 years more for a diagnosis. It certainly did stop period +period pains.

  • Trie it along with other stuff and it just did not work for me nor did it help the pain. Tried all sorts but currently on minipill Cerelle and it has worked.

    my Gp talked me in to it and apart from spots on my back, I feel tons better. No period since October when I started it. No pain either, no spotting nothing. Plus if all goes well my Gp will let me stay on it until menopause ss I am 45 now. Just a suggestion.

  • Thanks so much lovely ladies for your feedback.I truly wish that we all reacted the same with these drugs. It seems so individual! The trial and error dance can be so taxing to our health and emotional wellbeing.

    I reakon we are all warriors with this disease and nobody knows it! x

  • Yes, have had it before, but doesn't work for me. I still get periods and the pain is worse.

  • Hi there cooka

    I personally was put on it for about a month, and it gave me a lot more severe pelvic and period-type pain. However, it's totally different for everyone! unfortunately, endo is such a bugger as it's a case of trial and error. I have endo and adenomyosis (and was also diagnosed with interstitial cystitis last year) It is a battle but hopefully by trying things, we are winning the battle!

    Have you tried other pills/treatments?

    I found that with norethistherone, if i missed just one pill, i would get that very specific just before period pain, and i would start bleeding.

    I hope that you are doing ok and find something that helps

    Charlie

    xx

  • Thanks Charlie, i have used bio-identical progesterone troches compounded from a pharmacy which but still got major pms type symptoms! So they say i must be "progesterone intolerant" to even get these symptoms from the bioidentical one. So not sure if i should even go near the synthetic ones. It's great to hear other peoples experience on the norethisterone first before considering.

You may also like...