Orilissa and Hot Flashes: 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."

• Ace...
• January 31, 2021

For Endometriosis "This medication gave me my life back. I was incredibly hesitant about going on Orilissa and postponed it as long as possible. I had already had excision surgery and a hormonal IUD which made me a functional human again, but in no way were my symptoms under control. I was getting horrendous flare-ups that inhibited sex and a lot of exercise. Orilissa was really the last option before another surgery. I am on the 150 mg dose. I experienced some hot flashes and night sweats when I first went on, but those were manageable. It took about four months before I noticed any decrease in symptoms. Now 6 months in, I feel “normal” for the first time in years! Every once in a while, I get some low-grade cramping (probably my hormones still cycling) but my period is completely gone and the persistent pain on my right side near my ovary is gone. I know there are a lot of mixed reviews about this med, but everybody is different, and giving this medication a try was worth it."

• Lin...
• Taken for 1 to 6 months
• July 23, 2019

For Endometriosis "Started 4 months ago with horrible hot flashes, drenching the bed at night, and terrible mood swings. Some pain relief, but it wasn't all the time. I still got some pretty bad flare-ups with the biggest Endo belly. I've gained about 20 lbs in 4 months. All that aside, the reason I have decided to stop taking this medicine is due to the major depressive episodes and extremely dramatic mood swings. Day 2 of being off of Orilissa and I'm at an all-time low, and it scares me. I read the study of the woman who committed suicide two days after she stopped taking it, and I'm frightened. The fact that there's no long-term study of effects should have been a red flag for me in the first place, but I was desperate. I just really hope the self-hatred goes away soon. I'll take the pain over the mental stress that this is causing any day. Thank you for listening. Endo Warriors, we are some of the strongest people because we have to be. My thoughts are with you."

• 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!"

• Col...
• Taken for 6 months to 1 year
• November 27, 2020

For Endometriosis "I've had 8 surgeries for endometriosis from 7th grade to 42, but because of all my surgeries... they've been leery to do a hysterectomy. Tried 150 mg Orilissa and it did nothing, in fact, I feel like I just had extra side effects: migraines, hot flashes, mood swings, etc. It didn't stop or help bleeding or pain. They upped me to 200 mg 2x/day and bleeding has mostly stopped. I still have pain and cramping, and side effects have increased. Now headed to have a complete hysterectomy with 2 surgeons at the same time because they expect a very adhered abdomen and complications. Menopause will suck, but at least I have an end point in sight now. I've also been on Depo and Lupron multiple times and feel like those worked better. I can't sleep well ever, constant migraines, hot flashes, and sweating like crazy... at least it's going into winter because summers are blazing hot here. Orilissa was a big fail for me, but I'm happy it helps some of y'all."

• 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."

• 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 :-("

• Bee...
• Taken for 1 to 2 years
• March 5, 2021

For Endometriosis "I was diagnosed with endometriosis when I was 17 and had a laparoscopy the following year. I have been on almost every birth control or endo treatment, and this is the first med that I've been able to take that actually helped my symptoms drastically. I didn't experience most of the initial symptoms as I have been on a continual pill treatment for the last 10 years, so I haven't had a period or PMS symptoms for nearly a decade. I read many comments saying that they took it with a contraceptive or other hormonal pill, and that is a big no-no and the main reason why they had such horrible side effects and experiences. I did/do experience side effects, but I would rather have hot flashes, joint pain, trouble sleeping, and night sweats than live every hour of my waking life with unbearable cramps, bloating, back pain, and all of the other symptoms I had with my endometriosis. A lifesaver and a must-try treatment for any woman suffering with endo."

• 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."

• Mms...
• Taken for 2 to 5 years
• November 29, 2022

For Endometriosis "I had an excision surgery to diagnose and remove my endometriosis. The doctor could not get it all, so she put me on Lupron post-surgery. When I went on Lupron, I was petrified of the side effects and reading others' experiences. I must handle it well because on Lupron I only had a few hot flashes, and on Orilissa, I feel like I have gotten my life back. I haven't had one side effect and went from 20 days of significant pain a month to zero and no period. This was life-changing for me. I had a newborn at home (adopted), and I could not imagine living like that taking care of the baby. I have been on it for two years and literally cried when my doctor said I couldn't be on it anymore. I know everyone's situation is different, so I urge everyone to do what is right for you. If you feel terrible, get off it, but know there are some people who are seeing amazing benefits."

• 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."

• 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."

• 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."

• Kan...
• Taken for 1 to 2 years
• May 8, 2020

For Endometriosis "I just wanted to share my positive experience with Orilissa. I had gotten to the point where I had zero pain-free days. Now I almost never have pelvic pain or cramps. I have been on Orilissa for a little over a year. I started on 150 mg once a day and was then increased to 200 mg twice a day for 6 months. I’m back down to 150 mg once a day now. I have had minimal side effects. I went through a short period of hot flashes, but those are very rare now."

• Ann...
• Taken for 1 to 6 months
• July 8, 2019

For Endometriosis "I am so glad to be experiencing endometriosis pain relief! I had a laparotomy two years ago and experience pain from another cyst and from scar tissue. I am taking this in conjunction with Norethindrone. I am experiencing a distressing amount of hair loss and uncomfortable hot flashes, but I’d take that over constant abdominal pain any day. I also take Women’s 50+ multivitamins and a magnesium supplement. I’m under 30, but the vitamins have a better balance that I seek to combat Endo symptoms and proactively balance potential Orilissa side effects. I’ll gladly keep taking this as long as I can."

• 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."

• Jam...
• Taken for 1 to 6 months
• February 26, 2020

For Endometriosis "I started the 200 mg twice a day for my endometriosis pain. My doctor gave me a coupon, making it $5 a month. I read the side effects that say you will basically experience menopause, and boy, did I. Hot flashes, mental struggles, super dark thoughts at times, extreme anxiety, body aches, and pains. I was on this medication for 4 months and have been off it for 1 month, and I feel SO much better. Yes, the pain is back, and I experienced my first period since being off, and it was painful, but the mental struggle I suffered was not worth it."

• 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."

• Lau...
• Taken for 1 to 2 years
• July 29, 2021

For Endometriosis "I definitely recommend using Orilissa, it has really helped me. My doctor says I am getting so much benefit from staying on it versus not (this is not a long-term drug). I have experienced some hot flashes (they were worse in the beginning), but I don’t notice it much anymore at all. The big side effect is not having a period, which I don’t mind. Before I started Orilissa, I was having TERRIBLE endometriosis pain, I went to the hospital twice because I couldn’t even walk or move from the pain. At the hospital, they gave me an entire bag of morphine, which didn’t even affect the pain, it was THAT bad. Now, I’m pain-free. I also have a 7cm cyst in each ovary (the size of a golf ball). Now, they have shrunk by over 1/2-3cm each! Surgery still isn’t out of the picture, but this gives them a greater chance of not losing my ovaries in surgery. My sister-in-law just lost an ovary in the same procedure because the cyst was too large, and they lost too much blood."

• 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."

• Nat...
• Taken for 1 to 6 months
• September 20, 2019

For Endometriosis "The medication worked for pain control, but unfortunately, I only lasted taking the medication for 6 weeks. I got the hot flashes, which were not too bad, my issue was the severe change in my mental health. I was having increased anxiety, depression, and terrible dark thoughts. It got to a point where I did not trust myself to be alone. I also gained some weight and constantly felt bloated. No menstrual cycle for those 6 weeks, which was wonderful. I also did have trouble with finding words and concentrating, and also joint and back pain. It's a shame it caused me to mentally feel like I wanted nothing more than to die because it did help with pain greatly. I've read my side effects are not as common, but it's a scary feeling to not feel safe alone. I'm looking for the next option to try and help the pain."

• 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."