Thanks Shannon! This is helpful information. My doc is one of those specially trained experts, so I feel good about that at least. He's very knowledgable and thorough, which is nice, but his bedside manner leaves a bit to be desired (he's nice, just not very good at bringing things down to our non-clinical level). I think I trust him (that is, I've only met with him once before my surgery and once after), and he's open to taking with us about our hesitations. I just want to make sure we are asking the right questions and educating ourselves.

Before having the cyst, I didn't know I had endometriosis (suspected it, but you know... they can't confirm it until they're in there), so there's A LOT of this that is still somewhat shocking and foreign to us. Not to mention the reproductive troubles that can come along with the diagnosis. I feel like every day we have new questions.

Hi and welcome! That's almost exactly how I was diagnosed too, except my grapefruit was a random tumor hanging out behind my uterus (weird!). I have not done Lupron or Orilissa, and I tell all of my doctors up-front to not even suggest them (but that's me, and everyone absolutely has the right to decide what's right for them). My advice (maybe this isn't advice, but an opinion?) is that you are doing the right thing by doing your own research and asking questions. The unfortunate truth is that most doctors and even most gynecologists know very little about endo. Even otherwise-skilled gyns give out incorrect and outdated information on endometriosis. For example, many will tell patients that hormonal contraceptives (i.e., the pill, IUD, or the Depo Provera shot) and/or GnRH agonists (i.e. Lupron and Orilissa) will stop endo from progressing and/or that they will make the endo "dry up" or "die" or something along those lines, and none of that is true. All they do is suppress symptoms (which don't get me wrong, can be very helpful-- birth control pills helped me get through most of my PhD program). The gold standard in treating endometriosis is excision surgery done by a specially trained expert (there are only about 100 in the US and mayyyybe 200 total worldwide). Of course it is pretty soon to be thinking about another surgery, but something to keep in mind for the future if your symptoms return (unfortunately, they usually do after ablation, which is the surgery almost all gyns do for endo). The Facebook group Nancy's Nook has a lot of evidence-based info on endo and on excision surgery. It's not a discussion/support group like this, it's solely an educational group, but it has been very helpful for me. Orilissa is pretty new, but from what we know so far, it is no more effective than birth control pills, but it is much more expensive and the side effects are much more severe. On the other hand, there are some folks who have gotten some relief from Lupron or Orilissa when birth control did not help them. Whatever you decide to do, keep in mind that the first couple of periods after a lap can be pretty rough even if you are taking something (that was definitely the case for me), so that may not necessarily be an indicator that something is not going to help (I learned that one the hard way). I know this is a lot to take in and it's not an easy decision, but this is a great community and we're here to support you <3