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A MyEndometriosisTeam Member asked a question 💭
Sebastian, FL

Has anyone taken orlisa? What are the side effects in the long term? I'm thinking about trying it

February 23, 2021
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Answer Summary

Members shared mixed experiences with Orilissa for endometriosis, with some finding pain relief after three months while others stopped within... Read more

Members shared mixed experiences with Orilissa for endometriosis, with some finding pain relief after three months while others stopped within days or weeks due to difficult side effects. Several members described severe depression, joint and knee pain, hot flashes, poor sleep, and concerns about bone density loss, with many feeling these side effects outweighed the benefits or made existing mental health struggles worse. A recurring theme was frustration that doctors didn't fully explain the risks or alternative treatments like pelvic floor therapy, leading many to wish they had known more before starting what they now see as a last-resort medication rather than a first-line treatment.

A MyEndometriosisTeam Member

I’ve been taking orilissa for 4 months now. It takes 3 months to start helping the pain. If you look at my page I posted a question about orilissa, a few women commented about it, it may be helpful. I've been doing a lot of research because I was told I wouldn't have any pain or issues while taking this medication and the lesions would shrink or stop growing. I found out that a lot of women still have pain, it's not as severe as it was before they took the medication, but it's still noticeable. Orilissa doesn't stop the growth of lesions. During my research, I stumbled across a few endo specialists, and none of them recommend GnRH medications because it's only temporary. The past four months have been hell for me, not only do I have pain, but my emotional state is awful. I was warned by people to not take the medication, but my doctor made it seem like I didn't have a choice. Instead of teaching me how to live with this condition, he just threw me a bread crumb and told me nothing else would work (even though I've read great things about pelvic floor therapy)...My doctor also didn't mention the long list of side effects. I think it important for you to weigh the pros and cons. I mean, orilissa is menopause in a pill, if you have anxiety it can make it worse, the same with depression, it can cause early-onset menopause, or cause joint pain, severe bone density loss, and bladder issues. I think because of the toll this medication takes on your body that it's should be a last resort. By no means am I trying to freak you out about taking it, I just think it's important to know these things. I don't think I would've taken it if I knew about the added-on problems I would have. Also, on the orilissa website, they have a savings card that you can take to the pharmacy.

February 24, 2021
A MyEndometriosisTeam Member

I'm on it now, short term ( just for another two weeks ). I'm finishing up my first pack and I am not a fan. I've had joint pain, particularly in my knees, hot flashes and the first two weeks roughly I had very severe depression. The depression smoothed out, but I would say its something to look out for/ be aware of. I also don't feel like I've slept soundly since I started it. Trade off though, my daily pain seems to have dulled. The major long term side effect they told me about was loss of bone density / osteoporosis.

February 23, 2021
A MyEndometriosisTeam Member

No to orilsa. Depression is a huge huge factor I mean many of us suffer fr depression due to endo and no one believing us then add this to the mix. Huge no. I have been on everything. I was the ginea pig. Surgery helped until lesions other places grew. Now no one wants to touch so I take pain meds everyday and head off to work

June 1, 2021
A MyEndometriosisTeam Member

That’s how I am on birth control. It makes me so emotional and even crazy like I can’t control my emotions and I keep getting cysts I had to get a cystectomy and three other cysts removed with my endometrial implants removed. My second surgery this year. And I’m still having pelvic pain

May 18, 2021
A MyEndometriosisTeam Member

And it is recommended to only take for 6 months

May 18, 2021

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A MyEndometriosisTeam Member asked a question 💭
Sebastian, FL

A MyEndometriosisTeam Member asked a question 💭
Sebastian, FL

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