Orilissa for Endometriosis User Reviews (Page 5)

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

"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!"

• Tat...
• Taken for less than 1 month
• January 31, 2022

"I started Orilissa on Jan 1, 2022, and have almost completed a whole month. My OBGYN insisted that it wouldn’t work for pain until about 60 days — average. Week 1 of taking the medication, I was not in pain. Week 2 was menstrual week, and the regular pain that I had been having reduced to occasional cramps. I did, however, stop having hot flashes when I started taking this medication. My symptoms from endo, such as cystic acne, hot flashes, and more, have gone away almost entirely, but I have experienced vaginal dryness, which is a little uncomfortable during sex."

• MKM...
• Taken for 6 months to 1 year
• November 18, 2021

"Thought this drug was too good to be true. The first 6-7 months of being on it, my pain did subside, but I was 23 when I went on it, and I was going through a 'temporary menopause,' meaning I stopped getting my period, had EXTREME hot flashes, insomnia, and I became really weak. Didn’t get a period for 2 years even after I stopped taking it. Those were just a few side effects of this awful medication. Felt pretty weird at 23 to not even feel like a woman. Word to the wise, explore other options before going on Orilissa."

• END...
• Taken for 1 to 6 months
• January 23, 2022

"I've been on Orilissa for almost 4 months. Reading the reviews, I was a bit terrified, I had tried everything else short of surgery. I had one period after taking it for less than a week, and it was painful, but I haven't had one since then. It has taken almost all my abdominal pain away, including my bowel troubles and most of my urinary pain. It's so much more bearable. I have hot flashes here and there and have experienced lots of headaches. My doctor prescribed a very low dose of estrogen to help counteract the headaches, hopefully. And says it shouldn't be enough to cause pain in my abdomen to increase. I would say that I'm more irritable than normal, but I'll deal with it for now."

• Ste...
• Taken for 1 to 6 months
• November 10, 2023

"I took Orilissa in 2019 for 6 months, 200mg, and I really liked it. It helped with my endometriosis pain and stopped the pain for 2 years. Unfortunately, it came back really bad now. I tried to get my insurance, UnitedHealthcare, to cover it, but they won't anymore. I don't know why. If you get diagnosed with endometriosis, keep that paper and never let it go because insurance companies will fight you about this medication. Also, avoid eating dairy! Good luck, ladies."

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

"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."

• Anonymous
• Taken for 1 to 6 months
• February 20, 2022

"I was on Orilissa for a month. I have been off for two weeks, and it has completely screwed up my cycle. While on Orilissa, my period was more painful and lasted two weeks: one week of extremely heavy bleeding and one week of spotting. I was very moody and depressed while on the medication as well. Due to the side effects and just not feeling quite right, I stopped the Orilissa. However, I have only been off about two weeks, and my cycle is still 'off.' My period returned a week after stopping Orilissa, and I now have spotting after sex and cramping. I don't like this medication and wish I never took it. My cycles have never included spotting or been irregular prior to Orilissa."

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

"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."

• Gis...
• Taken for 1 to 6 months
• June 23, 2022

"I was prescribed Orilissa 200 mg as an alternative to a hysterectomy due to uterine fibroids. My periods became much lighter and less painful right away, but the headaches are almost every day, and then back pain and blurry vision started. I also started experiencing weird facial twitching, which I have never had before or after Orilissa. I've always been the all-natural, non-hormonal girl, so I don't know if this is why my body is so sensitive to this medication, but I've decided to tough out the painful, heavy periods and anemia a little longer and hope for another option to surgery. Also, I forgot to mention the feelings of depression and mood swings that just are overwhelming."

• Jex...
• Taken for 1 to 6 months
• August 14, 2021

"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."

• abi...
• Taken for 1 to 2 years
• November 19, 2020

"I started taking this medicine Orilissa from April 2019, not many side effects on me, only feeling joint pain. The most important thing I want to mention is that after keeping taking the medicine every day at the same time for 1.5 years, I got my period again."

• Dan...
• Taken for 1 to 6 months
• March 8, 2023

"I've been on it for about 2 months now, and if it wasn't for the debilitating pain in my left hip- to the point that I can't lay on that side at night- I would be so happy with it. The pain just keeps getting worse, and I'm afraid I'm going to have to stop taking it. It didn't start hurting until I had been on it for about 2 weeks. I'm going back to my OB on Friday to see what she recommends."

• its...
• Taken for 1 to 6 months
• September 1, 2022

"I started Orilissa a couple of months ago. It stopped my bleeding immediately, and it was good for a decent minute. I had some hot flashes here and there, but not too bad. After a month and a half or so, I started having frequent hot flashes, many times a day. I’d wake up sweating so badly. I felt like I was in an oven every time. I have been off of Orilissa for a week now, and I am seeing some improvement in the flashes, but wish it’d go away faster."

• Anonymous
• September 10, 2021

"I have to share this. I started Orilissa for endometriosis pain 5 months ago. I did try to stop it this month due to feeling very depressed. I have gotten my period every month routinely, and that is when I stopped it. However, the pain was surreal once I went off of it. I was chalking it up to period pains, but by the end of the first week, I was curled over. My stomach felt on fire, inflamed, sharp pains in front, back, and right side. I gave it 2 weeks and just couldn't take the pain anymore and started back on the Orilissa. After 2 doses, the pain subsided, and now I am on day 4, and it's almost gone. I can still feel where all the pain was, but I can definitely tolerate it. I guess my mental health is the price I gotta pay for my physical well-being. Nonetheless, it definitely helps with my endometriosis pain. Going to call my Dr. to see where I go from here."

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

"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."

• dap...
• Taken for 1 to 6 months
• August 25, 2022

"I really enjoyed the benefits of Orilissa the first few weeks. I immediately stopped bleeding and felt great about it. A few weeks in, I started to have horrible hot flashes, many times a day, and they’ve only increased in frequency. I also have a mood disorder and anxiety, which have been greatly affected by Orilissa in the past couple of weeks (I’ve been on it 2 months). I cannot stand the way I feel, and I will be discontinuing the medication as soon as I speak with my OBGYN."

• Kee...
• Taken for less than 1 month
• May 5, 2023

"I just started Orilissa on Wednesday of this week, and before that, I was on Medroxyprogesterone to control my bleeding from endometriosis, and it was helping fine. But three weeks ago, I started back spotting with dry old blood. Then it turned bright red, then dark to spotting again. I dealt with it for like a week, then I reached out to my ob-gyn and was like, I need something to stop this breakthrough bleeding! It's horrible. Now I'm on 150 mg Orilissa, and I have no side effects as of yet, outside of migraines and heavy bleeding. But did anyone experience bleeding in the beginning of taking this medication? I'm hoping it will help me to stop the bleeding and endo pain and symptoms. I'm also stage 4 endometriosis."

• tir...
• Taken for 1 to 6 months
• December 10, 2022

"I've only taken it for 5 weeks, and I've literally had a headache every day since I started. I would trade the abdominal pain for the headaches. My vision seems a little off also, I am not sure if it is due to the headaches or another side effect. I've had more abdominal/pelvic pain since starting also. My dose is 200 mg 2x a day."

• Reb...
• Taken for 1 to 6 months
• December 20, 2022

"I was on it in 2019 for approx. 3 months. I’m also on some really strong epilepsy meds; and this was one of 2 medicines approved by my neurologist and gynecologist for my endo. I had some severe joint pain; an increase in my migraines, and an inability to sleep. And while it did get rid of my period, the side effects were not worth staying on the drug."

• Lyn...
• Taken for 1 to 2 years
• September 23, 2020

"Do not take this medication! I took Orilissa for 1.5 years and just found out today I have osteoporosis! I'm only 37 years old. I'm in so much pain all the time!"

• hal...
• Taken for 1 to 6 months
• April 4, 2022

"I take 200 mg twice daily. I’ve had no side effects, and my pain is almost non-existent. Before Orilissa, I was in pain almost daily."

• Van...
• Taken for 6 months to 1 year
• April 10, 2023

"I suffered some side effects for the first 6 months, but after that, little to none. Has dramatically decreased my endometriosis pain and has largely given me my life back."

• Anonymous
• Taken for 1 to 6 months
• December 28, 2021

"Amazing drug completely stopped my periods and pain! All I have sometimes are heat flashes."

• Anonymous
• Taken for 1 to 6 months
• July 29, 2021

"Every listed side effect, as well as several not listed. That resulted in going to the ER and having issues still 3 years off of the medication."

• Cor...
• Taken for 2 to 5 years
• September 5, 2024

"This drug has been lifesaving. I take 150 mg. Side effects have been minimal (occasional hot flashes), and the pain from endometriosis is nearly absent."