Orilissa and Night Sweats: What Users Say

• 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."

• 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."

• 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."

• 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."

• 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."

• 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."

• She...
• Taken for 1 to 2 years
• January 17, 2022

For Endometriosis "I’ve been on this drug for about a year and a half. When I first started taking it, the side effects were horrible. Skull-crushing headaches, night sweats, hot flashes, mood swings, increased depression/anxiety, grogginess/brain fog, and overall just feeling like a pile of hot garbage. And after being on this drug at 150mg, I’m here to report that all of those side effects are still strong and very present. One might think, “Well, if it takes your endo pain away, then it’s worth it, right?” No. The pain is still there, I still have terrible flare-ups, I have random breakthrough bleeding, it’s just been a horrible time. Having endo + having terrible side effects just makes you feel more depressed and hopeless. Recently, I began to have strong symptoms that were just like PMS symptoms. After an MRI, my doc determined that my body is producing enough hormones to overpower the Orilissa. Now, I’m stuck taking 200mg twice a day for the next 6 months. DO. NOT. TAKE. THIS. DRUG."

• Jen...
• Taken for 1 to 6 months
• March 9, 2020

For Endometriosis "Orlissa is not a pill form of Lupron, as some say. Lupron is a GnRH agonist while Orlissa is an antagonist, although both's end result suppresses estrogen, which ultimately suppresses endo. For me, with severe endo, I noticed within 2 days it helped my systemic inflammatory symptoms, mental fog, and the pelvic ache I live with daily. I no longer have a uterus due to adenomyosis, so periods are not an issue anymore. I have a love/hate relationship with this drug due to the alternating, intolerable night sweats and night chills resulting in insomnia. The lack of estrogen Orlissa causes makes me apathetic too. I really want to stay on it as I can tell it helps the endo symptoms and pain, but not sure how long I can tolerate not sleeping well."

• 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."

• 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."

• 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."

• Cat...
• Taken for 1 to 2 years
• April 4, 2020

For Endometriosis "I started on this medication in January 2019, just after a surgery for my endometriosis. I was 17 at the time and was desperate for any relief from my pain. For roughly the first year, I was on 150 mg once a day. My medication cost $30 for a three-month supply or $50 for a nine-month supply through CVS Caremark and my insurance. For the first four months, I was feeling great, but then the pain hit again. For roughly nine months after, I was still in pain every day, bleeding constantly and feeling the side effects of the medication (night sweats, hot flashes, headaches, dryness, acne, joint pain, etc.). I also have a previously diagnosed anxiety disorder and clinical depression that seem to be slowly getting worse. Now I've been taking 150 mg twice a day for roughly a month, and I've been feeling alright. I'm still having all of the symptoms with the occasional endo-ache."

• 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."

• Anonymous
• Taken for 1 to 2 years
• July 20, 2021

For Endometriosis "Started this medication in July of 2020 for chronic endometriosis. After 3 weeks, I was placed on Lexapro as it caused horrific anxiety and emotional outbursts. My periods halted and yes, pain subsided. However, the anxiety continued, started showing early signs of menopause (hot flashes, night sweats, fatigue, mood swings). I stopped this medication 3 weeks ago after starting to have symptoms of body aches/joint pain. Also, if anyone touched me or tried to tickle me, I would hurt so bad it would make me want to cry. Just this week, I have been diagnosed with fibromyalgia and bone density loss. I am 36 years old. This should not be happening. I will be having a full hysterectomy soon, as I should have done a year ago."

• Toc...
• May 11, 2021

For Endometriosis "When I began this medication, I got really bad cystic acne. I had never had acne like this before, so I had to see a dermatologist to prescribe medication. I was on Orilissa at the lowest dose for 7 months and had night sweats that made it hard to sleep and hot flashes throughout the day. I noticed less pain, and my periods completely stopped and resumed one month after stopping it. I also suffer from anxiety and depression, and it became a little worse. I gained about 10 pounds, and I had blood work done right after I finished it, and I have a vitamin D deficiency. I don't know if it could be from this medication."

• bmf...
• Taken for 6 months to 1 year
• March 26, 2022

For Endometriosis "I have been on Orilissa for almost a year. I went on the 200 mg dose originally, and it helped a lot with symptoms of endometriosis, but I was getting hot flashes and night sweats, and it has caused my mood to change a lot. I switched to the lower dose after about 3 months and have been on it since, but I feel like it is slowly becoming less effective. I don’t get hot flashes as often on the lower dose, but I almost feel as though my emotions are dampened or very extreme, so beware of this if you have a history of depression/anxiety. I love the company, though they had a nurse who checked in on me to make sure I was doing okay and was able to get my prescription filled, and their program to pay for it is great if your insurance doesn’t cover."

• Hal...
• Taken for less than 1 month
• October 11, 2021

For Endometriosis "Has anyone else tried cutting the dosage much smaller? I was on the 150 dosage for less than one week and had side effects that were worse than the condition being treated. I experienced night sweats, but the mood issues were the red flag for me. Have not had panic attacks and depression like that in over 20 years. I tried stopping and re-starting with the same result. But at the same time, I experienced pain relief that I definitely need. So I am now taking less than half a dose. I am not sure if this is recommended, but I need the pain relief. I was surprised that it is not even period-related for me. I have been having bad back pain that is likely a disc injury, and it has totally disappeared on this medication. I also have less abdominal pressure and pain than normally, which was a major symptom for me. This is after taking a half pill every other day that I am seeing these positive changes. I am going to keep this small dosage and see if the mood issues are not too bad."

• Ale...
• Taken for 1 to 6 months
• December 15, 2021

For Endometriosis "I started out with the 150 mg tablets, but they didn't work, so my Gyno upped the dose to 200 mg a day. At first, I didn't really think I experienced any help, but by the 2nd to 3rd month, I felt a difference and my menstrual cycle stopped completely. I did experience some pretty nasty hot flashes and night sweats, but that was the most, I thought, had occurred. I was told by my Gyno that the loss of my cycle was normal and so were the other side effects, so I figured they knew what they were talking about with the drug. Until she told me about the bone loss side effects on my follow-up appointment by month 5 to see how the medication was working, and then she dropped the bomb on me. She told me that I can only be on this medication for 6 months only because it is NOT FDA approved for longer than 6 months. I did experience bone loss in my teeth, and I found this out just recently after having a tooth extraction and my dentist showed me. BE CAREFUL with the drug!! THEY DON'T KNOW ENOUGH ABOUT IT!"

• phi...
• Taken for less than 1 month
• April 4, 2023

"I have to say I agree with all the other reviews to not take this drug. I only took this drug for seven days, and it was enough to make me think I was going to die. I took Lupron before I was prescribed this medication before starting my second IVF cycle for my adenomyosis. Lupron was way better in regard to the side effects. I asked my doctor from Genesis Fertility which one was better, and he said they work the same way, boy, was he wrong. On the second day on this medication, I started spotting, hot flashes, night sweats, horrible dry patches on my face, joint pain, migraines, blurry eyes, insomnia, and terrible mood swings. These symptoms got worse with each passing day, especially the bleeding. By day 5, it was as if I was on my period again, I was no longer spotting. On the morning of day 7, I decided that if I continued to take this drug, it was going to kill me. I still wanted to tough it out and take the drug because I paid $1200, but ultimately I decided not to continue."