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Orilissa
A MyEndometriosisTeam Member asked a question 💭

Hello everyone, my obgyn is suggesting I try taking Orilissa to help with endometriosis pain, and that it will shrink the lesions. Is this true? I’ve read it helps with pain but I’ve never heard anything about it possible shrinking or curing endo at all. She wants to avoid a 10th surgery but I’ve tried every other BC method available and nothing has helped except ablation, my last surgery was in 2015. Should I try this pill out or push for surgery?

posted August 22, 2019
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A MyEndometriosisTeam Member

I had read mostly negative reviews as I researched this "miracle pill". I decided to give in and try it. I was only able to hang in there for 9 weeks on the lower dose. It DID subside my endo symptoms within a few days & I didnt have a period. It ALSO gave me horrible headaches(near migraines) EVERY SINGLE DAY, I felt run down, I was always hot, emotionally i was borderline numb, I gained weight in a weird pooch pocket(I'm still trying to work out). For me, it wasnt worth it. I would rather have my horrid pain than feel that way every day. Within a week of stopping, I felt like "me" again.

posted September 8, 2019
A MyEndometriosisTeam Member

Ive been on orillisa for a few months and after about 3 months my pain came back. I want to say I’m an oddball case but honestly, all of us are so who knows. Im starting the higher dosage or orillisa next week but honestly i dont think my doctor really knows what to do with me after that if my pain doesnt go away.
I believe that endo grows off of hormones like estrogen. So putting us in a medically induced menopause takes some of those hormones away, which “shrinks” the lesions. That being said, once we stop taking the pill they will start to grow again.

posted September 8, 2019
A MyEndometriosisTeam Member

Haven't taken Orlissa. Was offered it but based on what I researched, it just masks the pain. It might shrink the lesions, but based on my understanding of endo, it doesn't matter because they can feed themselves the estrogen and keep getting bigger. IMHO, for me, the only thing that truly helped toward healing is excision surgery, and I've had two. You can read my recommendations tab and my story and I'm happy to answer questions.

That's not to say don't take Orlissa if you feel it's right for you. I personally wasn't convinced it would do anything except put me into chemical menopause, which I didn't want to do because of a strong family history of heart disease on both sides of my family. I've heard good and bad experiences with Orlissa, so I hope others who've taken it can weigh in.

My second surgeon:
https://pacificendometriosis.com/category/artic...

My first surgeon (he now has two female surgeons who have joined, one has endo herself!):
https://www.drseckin.com

Didn't have surgery with him but did a consult. Great guy, but my insurance sucked and we couldn't afford him:
https://www.vitalhealth.com

https://www.endofound.org

http://www.jessicamurnane.com
https://knowyourendo.com
Jessica has endo herself and does a lot of education, has a podcast, cookbook, etc. These are her two sites.

Hope that helps.

posted August 25, 2019
A MyEndometriosisTeam Member

Have you had excision surgery?

posted August 22, 2019
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