When I told him my pain came back I expected to hear that we may have to do surgery again, but instead, he wanted me to try this "study pill". I finally said yes even though I was hesitant for a little while due to the side effects. But I believe if something can help, you might as well try it and you can just stop it if you don't like it.
After a 5 month process of getting set up for the clinical trial (this includes stopping your birth control for at least a month until you can move forward), I finally started the medication. Now the only reason I know I was on the real pill and not the Placebo was because I had spotting a few days after starting it and I asked my doctor about it and he said it has to be the pill, which means it's the real thing. So the real thing was 150mg of Orlissa twice a day, and add-back therapy E2/NETA (0.5 mg estradiol/0.1 mg norethindrone acetate) once a day.
I was very excited, I was so nervous about getting the placebo and being on something for months that wasn't going to work at all. So I was relieved to hear I should finally see some results. But then I started getting side effects... This resulted in me stopping the medication after 1 month of being on it. But I want to share the side effects I had so others can get opinions:
After having a weird/spotty period for about 5 days, I didn't have anymore bleeding. But I did notice I was very nauseous and couldn't get in the car without getting even more nauseous. There were a few days I was making myself throw up just to feel less nauseous and Zofran wasn't helping either. It was very intense and would give me bad headaches as well. This lasted the entire month before stopping it.
I kept complaining to my gyno that my pain was getting worse. But it was a different pain. He thought it was very weird but said it should get better within 1-2 months. I tried to stay strong and hold on but couldn't. Right before I stopped the medication I realized that this wasn't my regular endo pain because it was stomach related. I realized this because my pain medication wasn't helping, and it usually doesn't if the pain is in my intestines. So every morning when I woke up thinking this pill is making my endo pain worse, it was just causing me a different pain (which could have aggravated my endo as well).
Within the last week before I stopped the medication I started to feel a feeling I hadn't felt in a long time. I was diagnosed with major depression in high school and re-diagnosed after having an episode in 2017. I'm on an anti-depressant so I've been stable and feeling good for a while now. But that week I felt a hole in my chest as if it was burning through my heart. I thought I was just anxious and having some anxiety-related chest pain but then I started to think terrible things. I didn't want to be alive anymore. I didn't want to deal with any of this. I felt darkness just hovering over me. I kept telling myself that this has been a hard year and I just need to think positive. But there was no getting through to me. Endo is always going to be frustrating and it makes me sad sometimes but I never gave up all my hope like this.
Before I Stopped
I started researching Orlissa all over again along with the add-back therapy medication and noticed that they both could cause depression and suicidal thoughts. I also remembered that other birth controls, like Yazmin or ones with high doses of hormones, had caused me severe depression before. So the add-back therapy or Orlissa could be to blame for the suicidal thoughts and I will probably never know which one it was. The best birth control for me has been LoLoestrin so I looked up it's dosing and it's estradiol dosage is 10x lower than the add-back therapy. That's a lot. Therefore, I stopped taking the medication because either way, something was causing me severe depression.
Plus nausea was a big side effect of Orlissa and abdominal cramping was one of the add-back therapy's side effects.
After 5 days or so, I went back to my normal self. I didn't feel like I never wanted to wake up again, I wasn't so nauseous I had to make myself throw up, and that weird cramping pain was gone.
Orlissa is not for me. But that doesn't mean it's not for you. Some women have great experiences with it and it has taken all their pain away. The downside is you can only be on it for 2 years max and then need to stop. I wasn't a fan of that part either.
But do I regret trying it? Not at all. I mean at first, I was upset that I wasted so many months just to try 1 month of the medication but now I know that it wasn't for me. So now I am back on my LoLoestrin birth control and will be having my 3rd surgery on May 31st. I know this strategy helps me with my pain and it's all worth it to me.
So what works for you? Are you on Orlissa or thinking about trying it? Tell me your experiences in the comments or if you have any questions!