Really looking for any personal experiences or anything like that. I have endometriosis and pmdd. (premenstrual dysphoric dysphoria). I was prescribed orilissa as a wonder fix it all for the pmdd and Endo. I was so desperate for relief I very naively did not do my own due diligence before starting the meds. I felt relief from the terror of pmdd and pain from endometriosis. Over time I became less and less tolerant of the side effects. I nearly had to full out argue with my Dr to stop taking the… read more
I had both endo and pmdd. I started oral birth control to help with the pmdd, which it did. It unfortunately did not help my endo pain that much, but at least allowed me to feel more sane and not insanely depressed during the 2 weeks of pms and bleeding.
Went through 3 other birth control/hormone treatments. All found to make the PMDD severely worse. Orilissa has been the 4th option. While not as severe as others I find it worsens PMDD or rather drags it out. It helps the pain but I still cycle daily. Stage 4 Endo was found too late for a full hysterectomy. Right side ovary removed as well as some of the endo and drained from cyst but couldn't remove the left without removing part of the colon and leaving me with a colonoscopy bag. I too notice the Orilissa being less effective or my building a tolerance. I have been on it 6 months. I have gone back and forth weighing whether to talk to my gyn about continue taking however the thought of a poop bag and the hopes of going through menopause sooner rather than later (almost 50) keeps me on it.
Its not well known at all which boggels my mind because it works so well!!!! It is normally used in high dosages to help stop addicts but they found in very small dosage it helps stop inflamation so its good for people with endo and also good for a lot of auto immune disorders, it was actually my rhumatologist who first mentioned it to me. You do not need to take anything else with it and it has almost no side effects! Only down side is it can take a few months to fully start working but man if it does work which it does for me it works great! If i am off it for wmeven a few days i feel such a big difference!
I've never had a Dr mention that at all. What is it? Do you take it along with something?
I have a really awesome compounding pharmacy I use to get one of my migraine meds.
Im so sorry the side effects for that were worse for me than my endo! Ask your dr about low dose naltrexone! I am on 4mg very few side effects if any and has helped me more than anything else i have tried! Insurance will not cover it because it is a comound rx but its worth it