My Experience with Orilissa and Hot Flashes

After much hemming and hawing, I decided to start taking Orilissa for my endometriosis in November 2020. My gynecologist prescribed Orilissa in late spring 2020 after I’d recovered from my laparascopic surgery for endometriosis. I was hesitant to try it for a few reasons:

• I already take so many medications, vitamins, and supplements for my health conditions
• Because I have menstrual-related migraine, I’m always very cautious about taking anything that alters my hormone levels
• The price of the medication (after my one week trial) was higher than I’d expected
• Unlike the pricy migraine meds that are prescribed for me to take “as needed,” Orilissa is a daily pill, meaning I’d have to face the high cost of it every month
• The patient reviews I’d read didn’t convince me that I simply had to give it a shot ASAP

Starting Orilissa for endo

After having a horrifically painful period in October - perhaps the most painful in a couple of years, and definitely the most painful one since my March 2020 surgery - I decided I’d start to take my Orilissa prescription after all. I called my trusted neurologist to make sure she knew I wanted to begin a new medication and to see if she thought if the drug’s potential effect on my estrogen levels made it not worth trying out, since I do have a history of menstrual-related migraine. When her nurse called me back, it was with the news that my neurologist thought it would be okay for me to start the daily medication and that there was even a chance it could help my migraine attacks.

A surprising side effect: Hot flashes

Many of us here know that some prescription drugs’ positive effects may not be apparent to the patient until weeks or months after the treatment has begun. The Orilissa website points out that endometriosis patients taking it may not feel its full benefits until three months after starting it. A few weeks into taking Orilissa, I started waking up in the middle of the night, so hot I couldn’t bear it. I even took my temperature a few times, wondering if I had a fever (or COVID-19!), but the thermometer was always below 98.6 degrees. Was it the weighted blanket I was using? If so, why hadn’t I experienced these borderline hot flashes in the past?

One night I was watching a movie with my mom and suddenly had to take my sweatshirt off; Minutes later, I was too cold in my tee and put the sweatshirt back on. I commented that I couldn’t figure out my body temperature, and I could practically see the light bulb go off above my mom’s head. “Do you think you might—?” she began, and I interrupted. “Mom! I’m 40! I’m not menopausal!” I said, half-amused and half-surprised. (Of course I know that plenty of 40-year-old women are perimenopausal at age 40, and I don’t think there’s any shame around that—it just that I had a hunch this wasn’t what was going on with me.)

Then I had an idea. I did an internet search for “Orilissa hot flash,” only to be led to this exact website that I myself write for, Endometriosis.net. Duh. I should've checked here first, the way I tell others to!

I have excellent sleep hygiene, and I know that good rest is important for all humans - and especially for those of us with chronic illness. Waking up nightly due to hot flushes/flashes was not only unpleasant, but was messing up my sleep schedule. I know that hormone-related sleep interruptions and hot flashes are coming for me soon enough, but I don’t need them just yet, especially if they’re triggered by a drug I have trouble paying for that I’m not all that keen on taking to begin with.

Why I stopped taking Orilissa

So, after making sure it was safe to do so, I stopped taking the daily pill. Within two weeks of stopping the Orilissa, I began to have fewer hot flashes/flushes. For the first few days after stopping the meds, I had as many sweaty wake-ups as I had been having, but they started to decrease in severity after that.

At the time of this writing, I haven't had any hot flashes or flushing in weeks. I would say I sleep through the night, but my bladder would beg to differ. All the same, my sleep is so much calmer and more restorative without waking up in a ball of sweat.

How many of you have had hot flashes triggered by Orilissa or some other medication that affects your hormone levels? Did the drug’s benefits outweigh its negative side effects? I’d love to hear more!