Stage 4 Endo - Orilissa or Surgery?
Looking for some advice. I recently had a laparoscopic surgery to remove bilateral ovarian cysts. When they got in there, they realized I have stage 4 endometriosis spread to my diaphragm, large cysts on both ovaries, and a uterine fibroid. They decided not to remove anything and aborted the procedure due to the severity. I was referred to a Minimally Invasive GYN Surgeon. He reviewed all the images from my lap surgery, ultrasound, etc. and confirmed the diagnosis. I was expecting he’d want to jump into a surgical treatment given the severity and confirmed diagnosis. Not to even mention the pain all of this is causing. However, he wants me to take Orilissa for 6 months to a year before he does the surgery to “calm things down”. I’ve read about Orilissa and I just can’t comprehend why I would need to take this for so long BEFORE the surgery. I just want this fixed so I can better manage it moving forward!! Has anyone experienced a similar approach to Stage 4 Endo?
If I were you I would seek a second opinion. I'm really sorry to hear that the surgical team you had originally was not prepared to help you when they already had you on the table. As you know, stage 4 is serious. I'm disappointed to hear someone who is MIGS trained is asking you to go on bc right now instead of scheduling surgery. While some experience benefit from bc in that it stops periods, it doesn't always "calm things down" as he is suggesting. I hope you're able to find someone more skilled to help you. In case you don't know about it, using Nancy's Nook's online tool can be helpful, as can their Facebook group. https://nancysnookendo.com/find-a-doctor/ ~Katrina, Endometriosis.net Advocate Thank you so much!
I was told to take Lupron to calm down things before my first laparoscopic/laparotomy procedure but I didn’t want it. But after surgery they talked me into it. I regretted taking it because my ovaries failed and I had no children yet. I also got a lot of side effects. I do not do well with medications. I had cytochrome P450 testing and did horrible. I have tons of allergies and I bet I have mast cell problems. I never took a lot of meds. But the ones forced on me except my beta blocker I done horrible with.
