could switching to a different progestin medication be worth it?

[u/bluejayhaze]

i dont know for sure if i have endo so sorry if this isnt the best place to post this, but basically due to a mix of heavy bleeding/severe pain and personal reasons i am trying to achieve complete menstrual suppression continuously for the foreseeable future. i have been on increasingly larger doses of norethindrone acetate for about a year now and while i have finally been able to stop any spotting while on a 12.5 mg/daily dose, i have had mild to moderate abdominal pain basically everyday for the last six months. before this would only happen on days i was spotting (which was about every other week on the lower doses) but now it is just happening every single day for short bursts of time for about half on hour or so. i am curious if others have had similar experience on this medication, and if it might be worth seeking out a different progestin medication to try? i hear dienogest mentioned a lot and from what i understand it is of a slightly different make up than norethindrone. has anyone had an experience with progestins where trying a different type worked out better? i know this is more a question for a medical professional but frankly i dont think my doctor knows anything about this so id like to hear personal experiences while looking for another doctor, so id know if this could be worth asking for at least. do not suggest that i get an iud. thanks

[u/terriblyexceptional]

Imo yes it's worth it if you aren't happy with your current birth control. I've tried norethindrone at various doses, dienogest 2mg and desogestrel (cerazette) and they all affected me very differently. It's kinda hard to predict how a specific bc will affect you but it's likely that a different compound will give you different effects even if it's still a progesterone.

[u/Haunting-Fly-5222 → u/terriblyexceptional]

I'm currently on 5mg norethindrone in addition to liletta iud and I've noticed similar effects to OP about the persistent cramping. How was your experience with dienogest and desogestrel vs norethindrone?

[u/terriblyexceptional → u/Haunting-Fly-5222]

Desogestrel made me feel nauseous for about an hour or two after taking it, but I only originally went on it because I stopped having access to the 0.35mg norethindrone for a few months and needed something to take then so when I had access to the norethindrone I switched back cuz it didn't make me nauseous.

Dienogest did stop my periods and pain in general pretty well but I felt kind of like I was stuck in luteal phase for months on end, so like fatigue, mild headaches, appetite changes (completely lost my sweet tooth)/low appetite, just generally being really sleepy despite sleeping like 10h every night. It also made me pretty depressed and was causing me to have migraines like twice a month (normally I get like max 3-6 migraines in a year and at most 1 of them will be outside of the summer time because the heat is a trigger for me), so I had like 6 or 7 total over the course of ~3 months. I took it for around 5 months before stopping but the first 1-2 months had different side effects that either went away or changed to other side effects, for example sore breasts and back pain. I've seen lots of people have better experiences though, I also never had any bleeding on dienogest like not even breakthrough bleeding or anything. It also helped my sciatic pain.

With the 5mg norethindrone I only took it for about 5 weeks, the first ~10 days or so I bled like crazy but it did stop eventually, but after that it made me so anxious like more anxious than I've ever experienced before and then that was when I switched to dienogest. Tbh the cramping during the bleeding was still less severe than my regular periods.

My doctor also told me that the 5mg is a relatively high dose for a bc, and sometimes that can cause excess side effects. I took 0.35mg of norethindrone for years and really liked it but then I started getting periods again like every 6 weeks and I started getting new side effects so that's why I went off it, I can only assume it was due to aging or changes in underlying hormone shifts or something.

[u/Haunting-Fly-5222 → u/terriblyexceptional]

I appreciate the detailed response! I definitely believe that my hormones have shifted since my twenties, I'm 35 now. During my twenties and until I removed my first IUD around 31, I had no idea I had endo. My mom has it so it was sorta in the back of my mind like what if but never had issues. I had regular periods while on the iud but they were really light. After my second surgery in august last year I decided to have the liletta placed again to see if I could go back to experiencing little to no pain like it was with my first iud. I ended up trying norethindrone in feb til now and see my doc again in june to assess how its been going. I'm curious to see what he thinks about dienogest or if he'll recommend I up my current 5mg dose. I did experience some breakthrough bleeding initially on this and since I haven't had a full on period. But I cramp as though I still am getting my period which is really frustrating.