On top of endometriosis I have other health problems. I am so tired of the pain and other discomforts of endometriosis that I am at a loss. I have POTS and some depression and anxiety and I am not sure I can handle the side effects of Orlissa. Has anyone been on it for a while? What are the side effects like? Are they worth it? I am just so tired of all of this
It is done as a laparoscopy but the actual removal is different.
Most gyns are not trained with excision skills. They use ablation/cauterization. They may have told you they used a laser to remove the lesions. I had that done and within months, I was in extreme pain within weeks.
Excision is different because they actually cut it all out.
Hopefully these will help explain the difference.
https://diamondobgyn.com/gynecologists-edina-mn...
Http://centerforendo.com/lapex-laparoscopic-exc...
I was put on Orilissa after my laparoscopy. It took 3 months to start working and I only had about 6 months of mild pain and I’m back to severe pain. I still get my periods and at one point bled for a month straight. The joint pain and anxiety I’ve had since I’ve been in it are pretty extreme. Going back, I never would have taken it. The first month I was on it I was having very vivid nightmares about dying. I could have written the script for the show 100 ways to die.
Is this the same as the exploratory laparoscopy I had already? He explored and removed the lesions he saw.. I thought I was okay for a little bit, but my pain is unreal now and the surgery was only 5 months ago.. pain was back after a couple months..
Wow thank you!! This was VERY helpful
We are medical twins! I have all of those things, too! AND I have tried Orilissa!
So, a couple of important things. The Orilissa took a good deal of my pain away but it made me feel crazy. My hair started thinning and I started to become obsessive about a few things that wouldn’t have ever bothered me otherwise.
Also, just be aware that in the trial, a woman with no known mental health issues completed suicide after being on the low dose for ONE MONTH, discontinuing it for two or three days. I can get you the info on that, if you’d like.
I will also admit that when I stopped taking it, some pretty dark thoughts came through my mind (two days after). I was in weekly therapy with a great trauma therapist at the time and we discussed how to handle this if it came up.
I ended up finding an excision specialist instead and had excision for my endo and the pain is GONE! I’m 11 weeks post op tomorrow. It can still come back, but the likelihood is much lower (about 20%).