Orilissa for Endometriosis User Reviews (Page 2)

• Emm...
• Taken for 1 to 6 months
• October 1, 2019

"I was very hesitant in believing that anything could work for my pain due to endo. I have had 4 surgeries relating to either endo or fibroids, etc. It has been a rough road. My gyno gave me Orilissa to try, and after about a week, my pain just disappeared. I was in shock. I didn’t even tell my husband or mom in fear that it would come back. But it didn’t. My excruciatingly painful period stopped, and my daily pain (level 7-8) lessened to about a 2. It's a freaking miracle. I know it may not be this successful for everyone, but please give it a try. I take oxycodone plus a number of other pain medications, and those have been cut in half. Yay!!"

• Jes...
• December 20, 2019

"Please do not let your doctor convince you to take this drug! I finally let my gyno convince me to go on it, as my endometriosis is so severe it can’t be surgically removed. Regretted it from day one. Excruciating back pain, to the point I could barely walk. After being on it for only 10 days (and taken by ambulance to the ER 3x due to severe abdominal pain/trouble breathing), I said screw it and quit. My liver was so swollen I couldn’t eat and began throwing up whenever I tried. My abdomen was so swollen I couldn’t wear anything but sweats. My doctor still tried to convince me to stay on it, so I called my oncologist. He couldn’t believe how bad my liver was in only a week and was thankful I had stopped taking it, despite my gyno trying to convince me otherwise. Seriously, he must be getting huge kickbacks for prescribing it because there is NO REASON it should be prescribed to anyone! I feel soooo much better after stopping and would rather suffer from the endo pain!"

• Ash...
• October 11, 2019

"When I started Orilissa for endo, I was a little hesitant. I started to get severe bone pain, my doc put me on Fosamax, it helped. The first week my endo pain disappeared, then it started to show its ugly face. I started feeling depressed and very irritable from the med. I started having really dark, morbid thoughts. The way I was feeling physically and mentally was hard. One minute I would be fine, the next I would feel so far down it was unbearable. I stopped the med after six months due to having most of the common, uncommon, and rare side effects and the mental state that it put me in. It has been four days since I stopped, I’m feeling very irritable, emotional, and my joints are sore. This med didn’t work for me, I still had endo pain with the side effects. If I knew then what I know now, I wouldn't have started this med. There isn’t enough info about it out there. Please do your research on this med before you possibly make the same mistake. If you are currently on it and are having issues, please tell someone! This med is not worth it. Good luck!"

• Pat...
• Taken for 1 to 2 years
• February 6, 2021

"Do not take this drug!! I started taking this drug in July 2019, and by July 2020, I have 100% estrogen-fed stage 2 breast cancer. I’m 37 years old, breast cancer does not run in my family. I’m the first! I did the genetics test just to be sure — it was negative... this drug is dangerous!"

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

"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."

• Pra...
• October 1, 2020

"My doc prescribed 200 mg of Orilissa. This is my fourth day on the medication, and initially I was optimistic about my experience as I didn’t have any side effects. Today, being the fourth day, I started my period, and I’m passing clots again. I’m moody, and I already struggle with anxiety and depression. So now I’m skeptical about my experience moving forward, and I’m not looking forward to things getting worse. I’m going to fight to maintain my mental status with prayer, a healthy diet, and a ton of my positive surrounding energy and laughs."

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

"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

"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."

• hap...
• Taken for 1 to 6 months
• May 4, 2019

"So amazing! I’ve been on Orilissa since late February, and for once I’ve had no pain! I used to have to take such high doses of ibuprofen to feel slight relief from my cramps, but I haven’t had to take any since starting this medication. Also, it stopped my period, which is a huge added bonus. Highly recommend. Also, take vitamin D and calcium supplements for your bone health just because the med can cause bone loss."

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

"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

"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

"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."

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

"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

"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."

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

"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."

• Meg...
• Taken for less than 1 month
• July 3, 2022

"I read these reviews beforehand. Now that I'm taking Orilissa, I'm shocked my results were so good. I've been taking 150 mg for 2 weeks so far, and my doctor says most symptoms improve after 3-4 weeks, so I'm really excited for potentially more relief. Before taking, I had intense constipation/vomiting/bloating (like IBS C, prescribed the strongest dose of Amitiza for it, and still symptoms weren't managed), and for the last 6 weeks prior, I'd had an even worse flare of symptoms where no constipation medicine was working, unable to eat, vomiting when I tried, so bloated everything hurt, and my pain was 8/10 most days and 10/10 a few times when I considered going to the ER. My last period pain was so bad nothing made the pain manageable. My ob-gyn put me on Orilissa with surgery scheduled. I've got no side effects at all. Pain dropped 40% immediately, so I'm now 4-5/10 pain most days, and the other issues have lowered somewhat. I always had bad reactions to birth control, so I'm so happy Orilissa works for me."

• End...
• September 30, 2019

"Orilissa has been a huge success for me! I’ve been on it for about three months now. It eliminated most of my endometriosis symptoms, like bloating and pain. Occasionally, I do get pelvic and lower back pain, but ibuprofen is now enough to address that. I did deal with severe mood swings and depression when I first started. Make sure to talk to your doctor in this case! I felt very scared, but getting the support and purposefully scheduling check-ups really helped me out. Things have gotten way better, and many of the side effects are disappearing. MAKE SURE YOU STAY IN CONTACT WITH YOUR DOCTOR AND SCHEDULE CHECK-UPS! I recommend this if things are fine or not, just to make sure your mental and physical health are doing well."

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

"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

"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."

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

"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."

• End...
• January 28, 2020

"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

"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."

• Hel...
• Taken for 6 months to 1 year
• September 23, 2019

"Orilissa is great-it just takes a little time to get used to! When I first started taking it, my mood swings were pretty severe. But my doctor started me on Lexapro in combination with Orilissa, and everything has evened out. My pain has gone away, and I'm back to having pain-free penetration! I'm a few months in, and my period is completely gone. It took me about 6-8 weeks to finally feel adjusted, but now I love it. Just keep hanging in there."

• Sta...
• Taken for 1 to 6 months
• May 4, 2022

"Stage 4 endometriosis, mobility issues due to back pain. I am on week 3 of Orilissa 150 mg, and I believe it is working for me. I have not experienced any negative side effects unlike others, besides mild body temperature regulation and sleepiness during the day. This was a remedy to avoid surgery, and this may be the answer for me. I did have to fight the insurance company for 6 months to get on it. After a uterus biopsy and the doctor's office's help, they were able to get the insurance to cover it."

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

"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."