My obgyn has suggested trying Orilissa. I'm scared to try this because I've heard such mixed reviews. My other concern is I don't know that I understand the goal of taking this. I asked about surgery to remove my endo because it wasn't treated during my diagnostic lap. My dr says my lesions are too mild and it wouldn't be helpful? He also doesn't do excision so I would need to get referred elsewhere. If you can only take Orilissa for a few months-years what happens when you finish taking it? I'm… read more
I just want to validate how hard it is to find good endometriosis support from doctors. I was recently told that the only way to get propper care is to go to Boston because the one good doctor in RI (who performed my hysterectomy) left to do research instead of active practice. I have not had the courage myself to invest the time and energy into seeking care in Boston but I thought I would offer that validation that if you are trying to find good care in Rhode Island that is really hard right now. I was also offered Orlissa and my research yeilded similar questions so I did not opt for it myself. Pain returned for me after a hysterectomy with extensive attempts to excise all endometrial adhesions. All that to say, this moderator's feedback that surgery alone is not the full answer for everyoneis is very true. If I do get the energy/courage to go up to Boston to see if the specialists there are more help I will let you know. I wish it was easer. Hang in there. You are not alone.
These are really thoughtful questions, and it's great that you're doing your research before making any decisions. Let's break this down.
What Orilissa actually does
Orilissa (elagolix) is a GnRH antagonist, meaning it works by lowering estrogen levels in your body. Since endometriosis lesions are fueled by estrogen Show Full Answer