Orilissa and Headaches: What Users Say

• Anonymous
• Taken for 1 to 6 months
• March 5, 2021

For Endometriosis "I have been on Orilissa for a little over a month now for Multiple Fibroids. When my gynecologist first prescribed it, I read the reviews and was terrified to try it! I read some pretty scary side effects several women went through. However, I am happy to report that the only side effects I've experienced so far are a few hot flashes here and there and a headache every now and then. No night sweats or anything else so far. My period was due and never showed up, so that's also a plus in my book! The only thing that concerns me is the potential for bone density loss, but my doctor prescribed vitamin D3 - I'm to take one only once per week to counter bone density loss. She has me on the lower dosage (150 dosage) of Orilissa and prescribed 3 months worth, so I don't know if after 3 months she will have me take Orilissa a bit longer. I will come back on here after I have completed 2 full months to update how I feel."

• 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."

• Scu...
• July 21, 2020

For Endometriosis "Before I started taking Orilissa, I read the reviews and got worried, so I wanted to share my experience to hopefully alleviate some anxiety for someone else. I started taking 150 mg of Orilissa once a day 3-4 weeks ago. I began taking it while I was having an endometriosis flare-up, and the pain decreased every day until it disappeared 2 weeks ago. I had a headache for the first couple of weeks, but that's gone now too. I started having night sweats, but I got used to having those when I tried Aygestin, which didn't help the pain at all for me. I initially took it at night, but that gave me insomnia, so I switched to taking it in the morning, and now I actually have energy during the day. I've honestly never felt this good in my life. I have a history of depression and anxiety. My mood has improved, partly because I'm finally not in pain for the first time in almost 20 years. It's life-changing. I'm only sad that I'm limited to taking it for 2 years. I guess that's when it'll be time to get an oophorectomy."

• 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!"

• Les...
• Taken for less than 1 month
• May 10, 2019

For Endometriosis "I didn't last a month on Orilissa medication for endometriosis. Most troublesome side effects included: 1.) disastrous, mobility-limiting joint pain in my knees, wrists, hands, and arms 2.) three migraines within less than a week -- if I were so lucky as to not have a migraine, I had a heck of a headache instead. 3.) awful back pain. 4.) mood disturbances. Orilissa is terrible, and the Ori For Me program stonewalls patients by providing inadequate answers to concerns. This medication doesn't treat or cure endometriosis and only serves as a potential short-term band-aid for pain management, so please consider the dramatic side effect profile carefully before trying it yourself. Endometriosis patients deserve better than this."

• Tri...
• November 13, 2020

For Endometriosis "Stage 2 endo with PCOS. I had the surgery to remove the endo and started taking the 150 mg for pelvic pain. It did not help me at all. I felt all of the side effects. So my doctor increased my dosage to 200 mg. This pill has helped with pain with intercourse. However, vaginal dryness and numbness occurred quickly during sex. In addition to night sweats, mood swings, severe headaches, back pain, belly bloat, depression and suicidal thoughts, extreme anxiety. I don't notice the anxiety, I just felt like I couldn't breathe, and being someone that has asthma, it's not a good feeling. Some nights, I would feel like I drank a bottle of liquor, felt hungover without actually drinking alcohol. I've only been on Orilissa for 3 months and decided to stop it because the side effects were increasing. I decided that I would rather deal with the pain of my endo than the side effects. Even after stopping the pills, I still have severe migraines and sharp spine pain. Still have endo pain and now a list of other health conditions."

• 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."

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

For Endometriosis "I was reading the other comments, and they are actually very accurate. The effects are strong, and I personally decided to take some vitamins and drank or ate extra calcium. Some of the effects that I felt more often are the hot flashes, the headache, and the mood swings, yet the mood swings were not even near as when I have my normal period. I did like the treatment, I did not have my period for that whole time, and it felt great. I had some problems sleeping, but I drank melatonin or just meditated till I fell asleep. I didn’t have pain during sex either, which was great, because, as we all know, endometriosis doesn’t make it easy during sex. I actually really truly liked it. Of course, I will recommend trying other things before trying Orilissa, maybe try some hormonal birth control and some naproxen, but remember to always ask your doctor first. If it doesn’t help, then ask for Orilissa. Personally, my pain and bleeding were so bad that I didn’t mind the effects of the Orilissa."

• 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."

• Lea...
• Taken for 1 to 6 months
• December 13, 2019

For Endometriosis "DO NOT TAKE ORILISSA! I had laparoscopic surgery in December 2018 at the age of 20. In January, I started Orilissa 200 mg twice a day for a month. I had severe headaches, hot flashes, bloating, fatigue, and depression. I lost a good amount of muscle, and my bones and joints throbbed all the time. I lowered the dose to 150 mg once a day, and I had absolutely no change at all. Not to mention, I had no sex drive, was completely dry down there, and my skin and hair became dry as well. I am in nursing school, and I could not focus on studying. My headaches were so bad they affected my eyes and even put pressure in my ears. I developed insomnia and lost all interest in everything. I highly recommend that people stay FAR AWAY from this medication. It took me almost 5 months to return to normal and 8 months to regain my strength and muscle mass in the gym."

• 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."

• sta...
• October 5, 2020

For Endometriosis "I'm sorry to see so many people have had negative experiences with Orilissa, as it has completely changed my life living with endometriosis. I've been on it for 10 months, and my pain has gone from debilitating to minimal and totally manageable. I still get periods, about once every 2 months, and usually have one day of what someone without endo would consider 'bad' cramps, but my periods are way lighter, and I no longer live in fear that I'll be unable to function when I need to. I get hot flashes and night sweats and experienced crazy fatigue the first couple days I was on it, but I switched to taking it at night, and that's fixed that problem. I am migraine-prone and have not seen an increase - I did go through an adjustment period with frequent headaches near the beginning, but that's leveled out. I do occasionally get more severe depressive/suicidal thoughts than I previously did, but on balance, it's not worth stopping the medication because it's made such a huge difference to my ability to function day-to-day."

• Z20...
• Taken for 1 to 6 months
• April 26, 2021

For Endometriosis "The positive is that it definitely helped with my Endo pain, I had been going to bed with severe pain each night and was woken up by it as well, and this definitely fixed that within a few weeks. The downside is I did get severe daily headaches and vision changes that affected my ability to work, as well as shakiness and a sharp increase in anxiety and depression. I lasted 2 months, but I’m looking at other options that won’t affect my ability to function as much."

• LJa...
• Taken for 1 to 6 months
• June 25, 2019

For Endometriosis "This week is my 12th week on Orilissa. I have endometriosis and PCOS and am also using Mirena, so I do not have a period but still have the symptoms. I have not had good results with this medicine. I had severe headaches when I started taking it. They eventually went away, but I have had hot flashes the entire time. My joints ache, it has gotten worse as time progresses. My hands are swollen a lot from the ache. The mood changes, depression, and negative thoughts are present and difficult to deal with. The medicine has not helped me and only made the symptoms I already deal with from endo and PCOS worse. I stuck it out until the 12th week because my doctor said that is when most women feel the benefit, and the cost is so much cheaper than the BC I had been taking, so I really wanted this to work. I will not be continuing to take this medicine."

• Sor...
• Taken for 1 to 6 months
• December 9, 2019

For Endometriosis "My endometriosis used to only affect me on two days of the month, however, it started taking over my life. Every day was agony, and I was taking painkillers just so I could get up in the morning. The first month on Orilissa was a little rough, I got headaches more easily and some skin tenderness. However, it destroyed my pain, I don't even have periods anymore, and I haven't needed to call out of work once for endometriosis, which is a godsend for my bank account. In the past, I have become suicidal on birth control, but I haven't had any problems on Orilissa. I'm in love with this drug."

• Bre...
• Taken for 6 months to 1 year
• June 19, 2020

For Endometriosis "I was given Orilissa 200 mg for 6 months for stage 4 endo. I did get hot flashes, mild headaches, neck pain, dizziness, and mood swings. Toward the end of the six months, the neck pain and headaches really started to bother me, and I had to take Tylenol and Advil every day. Having said that, I would recommend this drug to anyone who has severe pain from endometriosis. It did not completely get rid of the pain, but it did relieve the worst of it. After stopping, my pain came back about two months later, and that’s when I really appreciated this drug because I remembered how torturous this pain is. I’ve now started taking 150 mg Orilissa until I can get robotic excision surgery."

• End...
• January 28, 2020

For Endometriosis "I have stage 4 endometriosis, have had a colon resection due to endo, and been on the Lupron shot (which was the worst decision I have made). My doctor looked at my history and suggested Orilissa as my last option before surgery. I started on 200 mg twice a day. I could tell within weeks the change and being pain-free, but of course, it came with a price. The hot flashes are miserable, the joint pain wasn't too bad, the headaches didn't last long, the vision is still struggling, the dry skin was very bad, and bruising and blood spots under the skin are very bad. My doctor reduced me to 200 mg once a day, and within 3 weeks my pain was back and the cysts on my ovaries were back. I went back to twice a day. I figured I could handle hot flashes. I have been off of it for three days now, and the withdrawals are pretty bad. My hot flashes have turned into hot sweats and then freezing spells. My eyes are still very blurry and hard to focus, and I still have restless nights even with a prescription sleep aid."

• AMa...
• Taken for 6 months to 1 year
• October 7, 2019

For Endometriosis "I had laparoscopic endometriosis surgery in March 2019 and was prescribed Orilissa. The first few weeks after taking it, I did experience frequent headaches, mood changes, and night sweats. I figured it would work itself out. It has now been 6 months, and I have been told by my doctor that Orilissa is not working to slow down the growth of endometriosis, therefore, I am scheduled for a partial hysterectomy in November. The past few weeks have been very rough, battling side effects of this medicine such as daily headaches, joint pain, back pain, hip pain, pain in my abdomen, anxiety with heart palpitations, weight gain, restlessness, sleeplessness, night sweats, very sad and disturbing dreams, irritability, and no change in sex comfort. Sex drive has been nonexistent since March. While the benefits of this drug to slow down the progression of endometriosis may have once been beneficial to me, the side effects outweigh those benefits."

• AMa...
• Taken for 6 months to 1 year
• October 7, 2019

For Endometriosis "I had laparoscopic endometriosis surgery in March 2019 and was prescribed Orilissa. The first few weeks after taking it, I did experience frequent headaches, mood changes, and night sweats. I figured it would work itself out. It has now been 6 months, and I have been told by my doctor that Orilissa is not working to slow down the growth of endometriosis, therefore, I am scheduled for a partial hysterectomy in November. The past few weeks have been very rough, battling side effects of this medicine such as daily headaches, joint pain, back pain, hip pain, pain in my abdomen, anxiety with heart palpitations, weight gain, restlessness, sleeplessness, night sweats, very sad and disturbing dreams, irritability, and no change in sex comfort. Sex drive has been nonexistent since March. While the benefits of this drug to slow down the progression of endometriosis may have once been beneficial to me, the side effects outweigh those benefits."

• Jes...
• Taken for 1 to 6 months
• June 11, 2022

For Endometriosis "I've been on Orilissa for 8 weeks now after years of ever worsening pelvic pain from endometriosis and adenomyosis. It took several weeks, but I feel amazing now, I am pain-free. As far as side effects, I've only had a few headaches and hot flashes. I was wary to try this because so many people have such a negative reaction to it, but it has really worked for me."

• 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."

• Anonymous
• Taken for 1 to 6 months
• June 20, 2023

For Endometriosis "I have Stage 4 endo. It grows on my appendix and liver. I have had severe occurrences of A-FIB as well. At 28 years old, with no other medical conditions, I suspect I have a small bit on my heart. It took me 10 years to get diagnosed. After the ex-lap, I started Orilissa for 3 months. Yes, I got headaches, hot flashes, and night sweats, and my boobs shriveled up like raisins. I had peach fuzz on my face. However, I was pain-free for the first time in 3 years. But I ran out while my pharmacy took too long to dispense the medication (the VA). So, having been off it for 3 weeks, my period hasn't come back. I had a week and a half of low energy, and over the last 48 hours, I have felt like there is glass inside of me. I am in so much pain, more than I think I have ever had. My bloat is so intense. I was actually reading these reviews for an explanation because I'm in agony right now. Ibuprofen 600 mg with alternating Tylenol is not touching the pain."

• Anonymous
• Taken for 1 to 6 months
• April 2, 2022

For Endometriosis "I have used/attempted Orilissa at the 150 mg two different times. First round discontinued using after 1-2 months and second time after 3 months. The drug resolved 95% of my pain secondary to my endo, but the side effects were almost more destructive than dealing with pain. Side effects included: hot flashes, headaches, inability to sleep, fatigue, lack of motivation, extreme mood changes, anger, anxiety, weight gain, noticeable change in vision, occasional joint pain, and after consuming alcohol (a glass or two of wine) would not feel well. If you can tolerate the side effects and need short-term relief, sure, give it a go. But after my second round, I have decided my quality of life has drastically declined AGAIN and is not worth it."