Elagolix and Nausea: What Users Say

• Man...
• January 14, 2021

For Endometriosis "I started Orilissa along with Norethindrone to counteract the side effects. The first two weeks were not bad, but I felt like my period was extremely painful, more than usual, and I bled for 10 days when I normally stop at 6. The 3rd week, I started to get super nauseous and had bad headaches. I slowed down on eating. The 4th week, I could barely eat at all without getting sick. My eyes became blurry, and it was hard to see. So I called off work and went to an eye doctor that said my eyes were fine, but they recommended I get off the medication because it was messing with my vision. I called the doctor that day, and they said I could stop both medications. I was hospitalized on day 3 of not taking it. I stopped eating completely and couldn’t even hold in chicken broth. I was extremely lethargic, and I was taken to the ER while going in and out of consciousness. These medications made my already existing anxiety and depression spike the whole time. DO NOT TAKE THIS."

• MRa...
• Taken for less than 1 month
• July 21, 2020

For Endometriosis "I took one dose of this drug Orilissa, and four hours later I was feeling deeply suicidal. I actually did self-harm later that night. I also was nauseous and had blurry vision. I have bipolar disorder and was very concerned about the mood effects. IF YOU HAVE BIPOLAR OR DEPRESSION, DO NOT TAKE ORILISSA. I have never had active suicidal thoughts until I took this."

• Sol...
• Taken for less than 1 month
• January 8, 2021

For Endometriosis "I had a horrible experience. I was prescribed this pill because no other birth controls could help with my pain, blood clots, and cysts. I did not do well with a pill that has a lot of estrogen in it, so my doctor thought this would be good and that I might have endo. After 3 1/2 weeks of taking it, I started to have horrible pain in my chest and back, so much acne that won't go away, and bloating so bad that I can't even wear pants. I had terrible abdomen pain that didn't stop and made it very hard to sleep. I also had terrible headaches and numbness all over, as well as nausea. I waited about 6 days, wondering if this was a flu, but on the 7th day, went to the hospital because I couldn't take it anymore. They ran a multitude of tests on me and said I was fine. They said they believe it to be the Orilissa. I went to my doctor after that to confirm, and she said to get off of it right away. I would never recommend this to anyone ever!"

• LOE...
• January 30, 2020

For Endometriosis "I cannot even begin to understand how this drug made it past clinical trials or how anyone could tolerate it. I had a laparoscopy 3 weeks ago and was put on this drug following surgery in an effort to prevent endometriosis from regenerating. The first day I took it-nausea and my first hot flash of my entire life (I am 29). This was accompanied by feeling out of it and like I was in a different body. The next day I took it and the following morning with SEVERE stabbing abdominal pain that wouldn't quit. Then came the waves of nausea and the leg shakes, followed by explosive diarrhea. In the following hours, I felt like I had the flu. I went to my surgeon, and he told me to discontinue this immediately. He informed me that some people can tolerate it and some people simply cannot. He also raised the concern of suicidal thoughts while on this med and said we can't have you walking around being suicidal every day. PLEASE BEWARE OF THIS DRUG AND THE HORRIFIC SIDE EFFECTS IT CAN BRING!"

• LOE...
• January 30, 2020

For Endometriosis "I cannot even begin to understand how this drug made it past clinical trials or how anyone could tolerate it. I had a laparoscopy 3 weeks ago and was put on this drug following surgery in an effort to prevent endometriosis from regenerating. The first day I took it-nausea and my first hot flash of my entire life (I am 29). This was accompanied by feeling out of it and like I was in a different body. The next day I took it and the following morning with SEVERE stabbing abdominal pain that wouldn't quit. Then came the waves of nausea and the leg shakes, followed by explosive diarrhea. In the following hours, I felt like I had the flu. I went to my surgeon, and he told me to discontinue this immediately. He informed me that some people can tolerate it and some people simply cannot. He also raised the concern of suicidal thoughts while on this med and said we can't have you walking around being suicidal every day. PLEASE BEWARE OF THIS DRUG AND THE HORRIFIC SIDE EFFECTS IT CAN BRING!"

• 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."

• Los...
• Taken for 1 to 6 months
• July 16, 2019

"After 3 years of miserable high estrogen, nausea, heavy periods, PMDD, breast pain, a complex ovarian cyst, hormone-induced constipation, and lots of pain... my doctor suggested Orilissa. I was on it for 3.5 months. I didn’t get total relief, my periods remained painful and heavy, but they were shorter. Instead of 2 weeks of anxiety, irritability, and crying - it was a daily, round-the-clock battle. I felt achy. My skin showed instant aging and dryness. I was still nauseous, fewer days though. I had worse insomnia, hot flashes, and night sweats. I put on a few pounds too. I didn’t see enough benefit to keep taking it, and my doctor agreed. I stopped at the end of May. It’s now the third week of July. Now I’m going bald! I didn’t notice the loss until about 3 weeks ago, and it is very noticeable. I can’t find this mentioned anywhere in the literature. My period is worse than ever. I’m scared what this has done to my bones if this happened to my hair :-("

• Ban...
• Taken for 1 to 6 months
• May 29, 2020

For Endometriosis "I want to share my positive experience with this medication for those who are worried about taking it when reading all the unwanted symptoms some are having. I have stage 4 endometriosis, and my pain was really bad. I also have pelvic cramps, cramps in my vagina, and left side lower back pain. This endo caused so much depression and pain. While waiting for my surgery, this was my only option. At the beginning, I had experienced various symptoms such as nausea, bone and muscle aches, headaches, and mood swings. I gave myself a month, and slowly, they started going away. I am also eating healthy and doing exercise every day to keep myself healthy. The medication is helping me! I am happier after taking it. The side effects listed on Advil/Tylenol are much longer than this. I would recommend you trying first."

• Cat...
• Taken for less than 1 month
• June 7, 2020

For Endometriosis "Have been prescribed Orilissa by gynecologist for pelvic unknown pain. Been on it for 2 weeks now, and I feel terrible. Feel like I have a fever even though I don't. Had several episodes of painful headaches, terrible nightmares, can't sleep 8 hours in a row, nauseous, can't eat at all for many days in a row now. Feel depressed, like crying all the time for no reason, very on edge, and I just lash out at my partner constantly for just being in the house and breathing. This medication is really hard to take as side effects are huge. Side effects of this medicine are as bad as Paxil when I started it 15 years ago. The first month was awful, but my anxiety got better after the first month, contrarily to Orilissa, which has had no effect on my pelvic pain so far. Be really careful with depression and suicidal thoughts. This medicine is definitely not for everybody and should carry the 'black box' suicide warning box. It does have the warning but not the full black box warning."

• Ell...
• July 3, 2021

For Endometriosis "I was on this medication for roughly 4 months due to painful cramps. When I first started taking it, I had headaches daily for 2 weeks and experienced hot flashes. By the third week, the side effects subsided and my cramps became nonexistent. I felt pretty positive about the medication for a while, until I started losing my hair by the handfuls and my joints became achy. This was not normal as a 24-year-old woman, so I talked with my doctor and stopped taking the medication. Now that it has been a week since I stopped taking it, my hair is still falling out and I have nausea every day. I did not have these issues until taking Orilissa and had normal blood work prior to taking this medication (ruling out most other possibilities). Orilissa did help cramping, but the intense side effects were not worth it to me."

• 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."

• sha...
• Taken for less than 1 month
• May 13, 2020

For Endometriosis "Never take this medication. EVER. I promise it’s not worth it. The side effects are horrific. Hot flashes, mood swings, nausea, dizziness, difficulty with vision, and the headaches! Oh, the headaches. I took my prescribed migraine medication four times in 6 hours (extremely not recommended) before it even started to go away. These aren’t occasional side effects. 24/7 I could barely get out of bed because of the general malaise. Not sure how this drug passed any trials, and I’m not surprised that AbbVie (the manufacturing company) has had lawsuits. I discontinued this pill after 9 days. I can’t handle it at all."

• HAZ...
• Taken for less than 1 month
• September 5, 2020

For Endometriosis "I’m on week 2 of taking Orilissa BID. I just finished my period (first one on Orilissa), and for the first time in my life, I had no pain during a period. My daily pain has decreased significantly as well. I have not noticed any mood changes, I already have anxiety. I have noticed some insomnia. The side effect that is most affecting me, though, is getting nauseous when eating and not being hungry at all. I’m having to eat small portions throughout the day and force myself to eat them (which for me is difficult because I forget to eat lunch all the time anyway). I’m finding ways to handle that. It’s actually what brought me to this site. Worth it to not be in pain personally."

• Mon...
• Taken for 2 to 5 years
• August 10, 2020

For Endometriosis "I was able to take part in the clinical trial for Orilissa. This medication is great but has its flaws... Before starting this, my endo pain was a 10/10 on most days, there were days I could not even get out of bed until I started taking this drug. Now, like most others have said, there are side effects. I already had a history of depression, anxiety, and insomnia, so I did not notice that these got worse once I started the drug. But the nausea and mood swings.... Boy, oh boy! They are a bit rough sometimes, overall, I think it's a great medication. Don't forget, we are all different and have different experiences. Mine has been pretty good, and I will continue to take Orilissa until I have children and can get a hysterectomy."

• Anonymous
• June 29, 2019

For Endometriosis "I have been taking Orilissa since the beginning of January following a second laparoscopy over Christmas. The beginning was super difficult. The headaches, nausea, and dizziness were horrible. Light bleeding in the beginning. I kept a diary of my symptoms, and my headaches lasted about three weeks. Next came the joint stiffness. I decided to try collagen supplements, and I have had mild to no joint pain since February. I accidentally missed one pill two weeks ago and have been bleeding every day for a week now. I don’t know if it was from that in conjunction with the amount of stress I’m under right now, but the pain I have with my period is right where it was before my surgery. I haven’t experienced severe hot flashes like I did with the Lupron injections, and my mood swings aren’t as bad on the Orilissa compared to the Lupron. I’m going to give it another month and see if I get another period. Overall, I’m pleased with this medicine. No pain for five months has been heaven."

• ron...
• Taken for 6 months to 1 year
• May 23, 2021

For Endometriosis "I started with the 150 mg dose in November 2020. (Stage 2 endo). At first, it made me very nauseous for about a month. Then it started working, and I was more than elated. I lost my period altogether after a horrible cycle in March. Now, 6 months into it, I am starting to feel the effects of menopause: sore joints, weight gain, sleeplessness, night sweats, lack of interest in sex, anxiety, and depression. Going to make a psychiatrist appointment. Having no pain is still better... we'll see how the next 6 months go."

• Can...
• Taken for less than 1 month
• March 25, 2020

For Endometriosis "I wish this drug could have worked for me. However, I could not deal with the debilitating nausea that it gave me. It felt like my hyperemetic pregnancy all over again. I also felt very emotionally unstable. I could have coped with the hot flashes and mood swings if it wasn’t for the extreme nausea, which was exhausting and a deal breaker for me."

• Lim...
• Taken for 6 months to 1 year
• October 12, 2021

For Endometriosis "I started Orilissa 7 months ago after having several lesions taken off the outside of my uterus, colon, and near my bladder several months before. Before that, I had been on hormonal birth control for a long time and had a horrible experience (horrid periods and very severe depression and anxiety). I sometimes wonder if the relief I have from this medication is actually from being off the hormonal birth control, or if this is the medication actually working. I haven't had a period since starting, and it's been amazing, both physically and mentally. I still have endometriosis pain on the side that was bothering me before, but I don't have hours of cramping like I did beforehand. The first couple months I would get night sweats and hot flashes, but haven't had any since. The only real symptom I get is within 10 minutes of taking the pill I get extremely nauseous, and it sometimes lasts until the next day."

• Eyn...
• Taken for 1 to 6 months
• October 27, 2020

For Endometriosis "I've only been taking Orilissa for a little over a month. I haven't noticed any side effects other than mild hot flashes and weight gain, but I also haven't noticed any difference in my pain. The only difference is that my nausea is a bit better than before. I still get it consistently, but not as bad. My doctor prescribed this to help with inflammation before my surgery. I was supposed to get Lupron, but it's constantly on backorder. Also, my insurance said they wouldn't cover it, but somehow my pharmacist got authorization, so make sure to check if your pharmacy has tried to get authorization."

• Sci...
• Taken for 6 months to 1 year
• July 10, 2022

For Endometriosis "I first took Orilissa after having a laparoscopy to verify I had endometriosis. I do not recommend this. Prior to taking Orilissa, I was prescribed birth control pills, the implant, and the depo shot. I had bad side effects with all those other treatments. Now I have to say, for me, Orilissa was NOT worth the trouble. I gained 50 lbs in 6 months, got acne, was constantly hot even in 40°F weather with no jacket and a sleeveless top, irritable beyond belief, and had what I can only describe as 'fly-like' symptoms the entire time I was taking the medication. My whole body ached terribly, I was nauseous, and I had a headache that would not go away. I tried talking to my doctor about all my symptoms, and she made me feel like she just didn't care. She told me that if my pain came back (it never fully went away), that she would put me back on it. So, I haven't been back to that doctor. I'm now searching for a doctor that will give me a hysterectomy."

• 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."

• mag...
• Taken for 1 to 6 months
• October 30, 2024

For Endometriosis "I feel like I got my life back! I'm 32, diagnosed with endometriosis at 27. Decided to try Orilissa because I dislike birth control and my pain became unbearable. Pros: helped my pain level go from about 8/10 to 3/10. Helped my bloating, fatigue, sex life, and got my energy back! I'm also less irritable, and I lost 1 lb a week for the first 12 weeks. Helped lower my pain within the first 12 hours of taking it. Cons: made my good days great, but bad days more noticeable. Side effects I got were mild hot flashes, few headaches around the time I get my period, mild nausea, low libido, and joint pain. Started on 400 mg twice a day, changed to 150 mg/day due to joint pain. 150 mg not enough, 400 mg too much. Played with the dose, I now take a 150 mg tab and a half of a 200 mg tab, so taking 250 mg/day seems to be enough to control my pain and not get bad side effects. Been taking almost 4 months, and my periods are a lot lighter or I don't get one. Wish I could stay on this forever, but unfortunately can't."