Yeah, I think you guys are right. After my new insurance kicks in, I'm going to try and see a specialist.

I'm sorry your Dr isn't listening to your concerns & it sounds like they're misinformed as well. Orlissa is a GnRh agonist & like all hormones the results vary from person to person. Best case scenario is that it works really well while you're on it to temporarily shrink the Endometriosis growths & reduce pain, without too bad side effects, but there's still long term risks with taking it for a long time including osteoporosis & earlier onset of menopause when you're older & reduced ovarian reserve.

Worst case scenario is bad side effects &/or it doesn't work to suppress your pain. And regardless of how well it works while you're on it, the effect is temporary. Once you stop taking GnRh agonists the endometriosis lesions will gradually return to their previous size.

This is why the gold standard of treatment is a very thorough exision surgery with a (vetted) Endometriosis specialist. There's a list of them in the Facebook group Nancy's Nook Endometriosis Education. You can join then go to the files section & search for surgeons to see the list. You still have to research them by searching in Nancy's Nook for their names & read patient reviews. But their skill level is higher than your average gynecologic surgeon. I highly recommend getting a 2nd opinion from someone with really good reviews in Nancy's Nook. Good luck!

@A MyEndometriosisTeam Member - I'm sorry you're in pain & unfortunately GnRh agonists like lupron and orlissa haven't been shown to be an effective treatment for endo. Sometimes they reduce pain and they're beneficial during fertility treatments if you have adequate ovarian reserve and aren't a candidate for Endometriosis excision surgery (due to recently having surgery already, or invisible or stage 1 disease), but even so and even if they do work to reduce pain, their effect is temporary.

And outside of fertility treatments they aren't recommended by top Endo experts. So I would seek a 2nd opinion from a Dr who's on the list of approved Endometriosis specialists in the Facebook group Nancy's Nook Endometriosis Education. 🙂

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A MyEndom...

That seems really insensitive for your doctor to blame anxiety for your pain! Maybe you need a second opinion! I am in a similar situation as you. I had excision surgery in early october and my bladder has been killing me. Its not in your head

I was on Orilissa before the medication I’m on now and it took it for the 3 months because I wanted to make sure it worked but I saw no difference pain was still become unbearable so made my doctor switch me to something else