Orilissa and Cramps: What Users Say

• Hea...
• Taken for less than 1 month
• September 24, 2020

For Endometriosis "I took this pill, Orilissa, for 3 days. The first day was not too bad. Started to shiver like I was cold, but it went away after 15 minutes, minor cramps in the abdomen area, with a lot of diarrhea, and feeling hot inside, which is not that bad. I’d rather deal with that than the pain I was dealing with on a day not being able to walk due to the pain. Day 2, I had some words I had trouble getting out, but like the shivers I got, it went away after about 15 minutes, so I did not think anything of it. I also had joint pain all over, and my hot flashes got worse. Day 3: Not able to talk right, my doctor's nurse instructed me to go to the ER due to me talking like the pig on Looney Tunes (IIII JJUST WWANTED HHHELP). That was a sample of how I sounded. I still had joint pain, shortness of breath, nauseous diarrhea, feeling extremely anxious, blood pressure was 164/96. This drug was not for me, I had high hopes, and now I just pray I can keep my job of 14 years."

• Cec...
• Taken for less than 1 month
• June 15, 2019

For Endometriosis "I have endometriosis and fibroids. My estrogen was way too high. I was a very emotional person, extreme PMS mood and pain. I had painful ovulation as well. The last two weeks of my cycle, I was a raging hormonal lunatic. I'm on my 4th week of Orilissa, and I'm a whole new person. I feel like I did when I was 21. My joints ache occasionally and sometimes have spotty memory, but my quality of life has done a 180. I've begun vitamin D supplementation in hopes of preventing bone loss because I love this drug and hope to continue it as long as necessary."

• Jes...
• Taken for 1 to 6 months
• October 16, 2019

For Endometriosis "I have endometriosis and PCOS. Prescribed Orilissa 150 mg for 24 mos. Took Orilissa from 8/13-10/13, $5.01 after insurance and savings card. Side effects on Orilissa: all over, deep back pain. Headaches and eye strain. Thinning hair on scalp. Acne all over chin. Dry skin. Rash on back and sides. Pain in abdomen. Sour stomach and/or nausea, insomnia-even with sleep aids. Constantly feeling bad about myself. Mentally, you feel “different.” I went to refill my 3rd month since they said it takes a while to see results. The amount after your first two scripts changes based on your insurance. Mine covered 80%-so it is now $181.79. This should be something doctors should be aware of. Not something they have you put in your body for 2 months before finding out the cost jumps up. Side effects as of today, day 3 of no Orilissa: insomnia worse than ever on day 2, day 3: cramps/pain in abdomen, back pain everywhere, headache, light sensitivity. Neck stiffness and pain."

• Upd...
• Taken for 2 to 5 years
• November 18, 2023

For Endometriosis "I've been on Orilissa for 4.5 years now, which is probably the longest anyone has taken it. Pros: my endometriosis pain is gone -- no periods, no pain, no bone loss. It's allowed me to pursue dreams that I didn't think were possible because I used to be bedridden. Cons: I'm stuck on this medication for life. I've tried going off several times, and my depression destroys me, and the endo pain comes back after about 3-4 months. The mood swings aren't as bad coming off as they are going back on. If I miss pills for more than 5 days, I start to notice horrible mood swings, cramps, and joint pain. I don't know. This medication has been a blessing and a curse. As long as I take it daily, everything seems to be okay. But it scares me that I'm hooked on a pharmaceutical drug, and we don't know the long-term effects of taking this for the rest of my life."

• Anonymous
• Taken for 6 months to 1 year
• January 25, 2021

For Endometriosis "I have had such good results with this medication, Orilissa. Before this, my periods were so painful and heavy, and I had really bad PMS before, and pain during sex. But on the medicine, I had some spotting once a month and mild cramping. PMS improved. I was on it for over a year. I just stopped it last month due to an insurance issue and am now miserable. Symptoms are all coming back, and I’m having terrible mood swings. I see the dr in a few days and am hoping to get back on it."

• rra...
• Taken for 1 to 6 months
• February 13, 2021

For Endometriosis "I have been on Orilissa since October 2020. The first two months were awful, as I had been warned. A horribly painful period and a massive migraine-level headache that lasted for 2 weeks are the highlights. The headache gradually lessened and then disappeared. It was rough, however, after I emerged from that time period, I am completely pelvic pain-free for the first time since 1990! I have had two surgeries, been on low-dose birth control pills continuously except for two, 6-month long Lupron sessions, and never, ever have I been pain-free, until now. I am so glad that I listened to my Dr. and other reviewers and held steady for those couple of months. It was more than worth it!!!!!"

• Tar...
• Taken for 1 to 2 years
• March 31, 2023

For Endometriosis "I took the 150 mg Orilissa for the full 2 years. The only side effects that I had were hot flashes and night sweats, which do not go away while you are on the meds. Up until the last 3 months that I was on Orilissa, I did not have any issues with pain, cysts, bleeding, etc. The last 3 months, I had two periods. One was like a normal period with extreme cramping, and the last was a cyst rupture with heavy bleeding for 4 days. If you are like myself, that struggles with cysts, pelvic pain, and bloating, I would highly suggest this medication. You do need to give it some time, and you do need to take it at the same time every day. I simply set an alarm on my phone for a time I knew I would be awake."

• Mix...
• Taken for 1 to 2 years
• September 29, 2021

For Endometriosis "I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of fullness, unable to sleep, extreme depression and anxiety, hot flashes, mood swings, but after about 10 or 12 months, all except the occasional hot flash and severe anxiety disappeared (I have been prone to severe anxiety and panic attacks my entire life, but this is on another level). BUT I AM VIRTUALLY PAIN FREE (from Endo at least... narcotic pain meds never really touched my Endo pain). Bone loss can be a huge issue, but as I am literally only taking this until I can have a hysterectomy, which can also cause bone loss, my doctor agreed to keep me on it a bit longer. I did run out 2 days ago and am angry with everyone, starving, gained like 6 lbs, my face is breaking out, my migraines are back, and I feel like I am cramping."

• Jme...
• Taken for less than 1 month
• March 16, 2022

For Endometriosis "Orilissa is absolutely the worst. The reviews are true. I was only on it for 3-4 days, and I had hot flashes and didn’t feel like myself. I switched back to birth control and now am experiencing cramps (due to the lapse in BC) and still do not feel like myself mentally. I feel down for no reason. I have been on birth control for close to 20 years, and it has some super mild side effects. I would take these any day of the week over Orilissa. I really feel like a lawsuit will be coming any day, honestly. It’s super strange that they had a nurse call me repeatedly. I feel that they know the mental health side effects and don’t care."

• Anonymous
• Taken for 1 to 6 months
• February 20, 2022

For Endometriosis "I was on Orilissa for a month. I have been off for two weeks, and it has completely screwed up my cycle. While on Orilissa, my period was more painful and lasted two weeks: one week of extremely heavy bleeding and one week of spotting. I was very moody and depressed while on the medication as well. Due to the side effects and just not feeling quite right, I stopped the Orilissa. However, I have only been off about two weeks, and my cycle is still 'off.' My period returned a week after stopping Orilissa, and I now have spotting after sex and cramping. I don't like this medication and wish I never took it. My cycles have never included spotting or been irregular prior to Orilissa."

• Anonymous
• Taken for 1 to 6 months
• February 20, 2022

For Endometriosis "I was on Orilissa for a month. I have been off for two weeks, and it has completely screwed up my cycle. While on Orilissa, my period was more painful and lasted two weeks: one week of extremely heavy bleeding and one week of spotting. I was very moody and depressed while on the medication as well. Due to the side effects and just not feeling quite right, I stopped the Orilissa. However, I have only been off about two weeks, and my cycle is still 'off.' My period returned a week after stopping Orilissa, and I now have spotting after sex and cramping. I don't like this medication and wish I never took it. My cycles have never included spotting or been irregular prior to Orilissa."

• Jex...
• Taken for 1 to 6 months
• August 14, 2021

For Endometriosis "I've been doing trial and error of medications and OT and pain clinic for my endo for over a year. This was kind of a final thing for me to try before discussing a hysterectomy. I was extremely skeptical since I already have mood issues from mental illness, but I was desperate. Immediately upon taking it, I was extremely nauseous, and I had the worst migraines that persisted daily for two weeks. I would have stopped it immediately just from that, but unfortunately, if I stop, I'll end up in the hospital from pain if I'm left unmedicated. So I've been on it three weeks now, mixed with the max dose of norethindrone. I bled for the first two weeks, my daily cramps are still horrible, and the nausea and headaches are still there, though not as bad. I also have horrible insomnia during the night, yet I'm completely exhausted during the day and just want to sleep. This is the most side effects I've ever had from a medication. I absolutely don't like this med, but I can't even discuss getting off of it until September 1st."