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A MyEndometriosisTeam Member asked a question 💭
Middletown, CT

Hi guys, I had endometriosis exploratory/excision surgery back in April, followed it with approximately 5 months of physical therapy, and I’m still experiencing no luck with pain relief. Recently, my surgeon recommended trying Orlissa (in addition to my current birth control, Norethindrone). Does anyone have experience with this medication, and what was it like? I’d really appreciate any insight. Thank you!!

October 25, 2025
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A MyEndometriosisTeam Member

Hello! I am currently on Orilissa. I started the medication back in June based on the suspicion of endo to see if it would help with the symptoms I have. In my experience it helps little bit however the side effects are tough. I have since had excision surgery to remove endo and will finish the Orilissa course soon. Good luck!

October 25, 2025
A MyEndometriosisTeam Member

Hey Liz! The most prominent side effects that bother me the most are the joint pain and increased anxiety/tearfulness. I also haven’t had a “real” cycle since starting the medication. I experience spotting here and there, which is unpredictable. I am happy I am not having heavy bleeding but losing the regularity is weird. I do think overall it may have helped a little to hold me over before surgery. I hope this helps! Feel free to reach out otherwise :)

October 26, 2025
A MyEndometriosisTeam Member

Hi Christie Jean! Thank you so much for your reply. Can you expand on the side effects? Which ones hit you the worst and what was that like? I so appreciate your insight. Thank you again.

October 25, 2025
MyEndometriosisTeam

Has anyone used Orilissa, and what was it like?

Orilissa (elagolix) is a gonadotropin-releasing hormone (GnRH) antagonist that works by decreasing your body's production of estrogen. Since endometriosis tissue responds to estrogen, lowering these levels may help shrink tissue and reduce pain.

It's typically considered Show Full Answer

Has anyone used Orilissa, and what was it like?

Orilissa (elagolix) is a gonadotropin-releasing hormone (GnRH) antagonist that works by decreasing your body's production of estrogen. Since endometriosis tissue responds to estrogen, lowering these levels may help shrink tissue and reduce pain.

It's typically considered when other treatments like surgery or other hormone medications haven't provided enough relief. Your surgeon's recommendation makes sense given that you've already tried excision surgery, physical therapy, and are currently on birth control and Norethindrone without adequate pain relief.

Important considerations:

Orilissa is usually taken for a limited time because lowering estrogen significantly can have side effects, including potential bone density loss. Sometimes doctors combine it with other medications to help manage these risks.

Since you're already on hormonal treatments, your doctor will likely monitor how the combination works together and may adjust your regimen accordingly.

It might be helpful to connect with other members on MyEndometriosisTeam who have experience with Orilissa to hear about their personal experiences with the medication.

October 25, 2025

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