Thank you so much for sharing your experience with Orlissa @A MyEndometriosisTeam Member! This is so helpful. I was on Orlissa 200mg for 3 months and although it significantly improved my symptoms, I had unbearable hot flashes (almost every 10 mins), brain fog, and definitely feeling weepy. My doctor ended up reducing my dose to 150mg, which helped reduce the side effects. I have been taking that now for 3 months. Last month around my period time, I ended up getting a full period that lasted 14 days with terrible pain. My doctor added another medication called letrozole 2.5mg twice day that did stop the bleeding and pain. Although, no hot flashes on this duo, I am very weepy and irritable. I don’t know what to do at this point since the medication has helped my quality of life, but it is causing these terrible side effects. I might ask my doctor if we could try mirena with the Orlissa 150mg and see if that works better. Thank you so much for sharing your experience. Take care and hope you continue to feel better!

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A MyEndom...

I’ve been using it for six weeks in addition to the Mirena IUD which I’ve had for 9 months. The Mirena did a great job stopping the scary levels of bleeding I was experiencing, but the pain, nausea, diarrhea and cramping continued.

My doctor added 2x per day Orlissa to my treatment and I’m cautiously optimistic at the massive improvement in pain levels so far. Spotted during my normally scheduled period time but had only mild discomfort that didn’t interfere with my daily life. Instead of 3 days of sleeping on a dog bed in my bathroom barfing, bleeding, cramping and miserable, I was actually well enough to go on a hike with my husband and go play pool at a pub with friends, vacuum my house, etc. Normal stuff.

After five+ years of different and often unpleasant treatments, I’m pretty excited about getting my mojo back.

For me, any side effects have been minor but I’ll list them in case you encounter them:
- a bit more weepy than normal the first two weeks
- strange pregnancy type things like smells seem really strong
- I’m thirstier and drink a lot more water so I pee like a racehorse
- strangest thing was getting Braxton-Hicks contractions for a few hours after sex. Not painful at all….just weird
- my hair is more brittle so I use extra conditioner
- my skin is dryer so the Body Shop is my new best friend.

Prior to Orlissa, my pain levels were much worse than the labor pains I experienced delivering either of my kids. The improvement has been amazing.

Good luck and I hope it works for you too!