Orilissa for Endometriosis User Reviews (Page 4)

• adh...
• Taken for less than 1 month
• April 8, 2023

"When I first started taking this medication, I was so excited because I work in a pharmacy and had recently heard of it when we had to order some for someone. I had been taking generic Yaz birth control for a while, and my gynecologist switched me to Slynd because of my endometriosis, and it has been good so far since I did not like norethindrone in the past. I have had painful, recurring ovarian cysts for years. Then my doctor added Orilissa, and I was like, 'Yay, finally some relief.' Keep in mind; I have bipolar disorder and CPTSD, and I am on the autism spectrum. I was horrified when I looked it up and saw the effects it had on other women, especially those who already had conditions like bipolar disorder. I took it for four days, and while it helped my cramps, I was a raging monster to my husband. I hated that. My gynecologist thought I would be okay since I am on a good mood stabilizer, but sadly, no. My pharmacist said she thinks it was this medication. I am so disappointed; I wanted this to work for me!"

• rra...
• Taken for 1 to 6 months
• February 13, 2021

"I have been on Orilissa since October 2020. The first two months were awful, as I had been warned. A horribly painful period and a massive migraine-level headache that lasted for 2 weeks are the highlights. The headache gradually lessened and then disappeared. It was rough, however, after I emerged from that time period, I am completely pelvic pain-free for the first time since 1990! I have had two surgeries, been on low-dose birth control pills continuously except for two, 6-month long Lupron sessions, and never, ever have I been pain-free, until now. I am so glad that I listened to my Dr. and other reviewers and held steady for those couple of months. It was more than worth it!!!!!"

• All...
• Taken for less than 1 month
• February 11, 2021

"I tried. That's all I can say. Day 2 and my liver started to swell and cause massive pain. I had amber-colored urine and was throwing up constantly. I stopped taking it, and all the symptoms have stopped after a day. I'm so glad this works for some women, but it caused possible liver damage for me. Just know your risks when contemplating this drug. It has very high-risk side effects."

• Sea...
• October 14, 2020

"This drug, Orilissa, is absolutely amazing. Within a couple of days, my pain has almost completely disappeared. Before Orilissa, I had debilitating digestive issues, and Orilissa made my life bearable again. Unfortunately, it put me in an awful mood almost constantly. I was lashing out at everyone around me. I decided I’d rather live in pain than drive everyone in my life away from me. I’ve tried at least five other birth control pills, but my body reacts horribly to progesterone, and I’m considering giving Orilissa another shot. I truly believe that this is worth a try."

• Anonymous
• Taken for 1 to 2 years
• October 25, 2020

"This drug, Orilissa, helped me tremendously. Before it, I was basically non-functional, with pain and digestive issues. However, I also have a pre-existing anxiety disorder, and anxiety is a side effect of this medication. I would not recommend it to people with severe anxiety, as it can occasionally cause additional anxiety in me. Additionally, bone density loss is another side effect to be wary of. If you aren't relatively healthy or under age 40 or so, I would not take this medication due to this factor."

• ron...
• Taken for 6 months to 1 year
• May 23, 2021

"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."

• Jbb...
• Taken for less than 1 month
• January 25, 2022

"I was terrified to take this medication, as anytime anxiety or depression are a possible side effect, I wind up having panic attacks. I decided to go against my gut and try this anyway. The first 3 days were fine. Then the anxiety started. The 5th day I was suicidal. Never in my life have I ever had that thought. Ever. I stopped taking this medication on day 7. I am STILL dealing with daily horrible anxiety and suicidal thoughts a couple of times a month, and I stopped taking this medication 3 months ago. DO NOT TAKE THIS. Mental health is just not worth it. If I could rate this a negative 100, I would."

• Anonymous
• Taken for less than 1 month
• January 9, 2022

"Be careful taking this medication, especially with other medications. I never usually take time to write reviews, but I had to for this one. I took this medication one time. I was excited it could potentially help the pain I'm in. About lunch that day, I felt strange. Then, my heart started racing in my chest, and I began to get chest pain. My vision was going in and out in my right eye and blurred overall. I had the worst migraine in my life. I felt like I was constantly about to pass out, and even somewhat felt detached from reality. I ended up in the ER. I legitimately thought I was dying in my 20s from this. I could not find any known reactions with my medications I already take and this one, but it's the only explanation. All tests were normal. It's been days, and I'm just now feeling like myself again. Please be careful if you take this."

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

"After reading reviews, I was hesitant to start Orilissa. However, my Ob/Gyn had a lot of patient success with it. I started taking 200 mg 2x daily one month after having laparoscopic surgery to remove some of my endometriosis (stage 4). I took it a total of 4 months. Pros: I had absolutely no endo pain or the usual bloated feeling. I also did not have a period or any period symptoms. I did not experience any headaches, depression, or suicidal thoughts. Cons: Major hot flashes and sweats ALL day, EVERY day (continued several weeks after stopping). My body ached, and muscles always felt tight. I had no sex drive. Due to being over the hot flashes, I could not wait to be done taking this medication. I did not sleep one full night during the entire time of taking it. I find managing endo pain and heavy periods is easier than dealing with intense hot flashes. This medication affects everyone differently, and you never know what you're gonna get unless you try it."

• Can...
• Taken for less than 1 month
• March 25, 2020

"I wish this drug could have worked for me. However, I could not deal with the debilitating nausea that it gave me. It felt like my hyperemetic pregnancy all over again. I also felt very emotionally unstable. I could have coped with the hot flashes and mood swings if it wasn’t for the extreme nausea, which was exhausting and a deal breaker for me."

• 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."

• Sam...
• Taken for less than 1 month
• July 20, 2022

"So my OB recommended Orilissa and gave me the 150 mg dose. Before my endo surgery, I denied Orilissa because of my concerns with the side effects. Of course, when I failed my 6-month post-op and was denied a hysterectomy again, I was basically told to take the Orilissa because we won't do anything else, so I did. Holy dang, it was horrible. I could only take one singular dose before my mom stopped having me take it because of the side effects. I took it at night. My symptoms at night were as follows: insomnia, heart racing, panic attacks, horrible pain in my upper right side, and increased anxiety. I was finally able to sleep, and I was hit with more side effects: horrible depression, mental breakdowns, endo pain so horrible I sobbed, and I almost attempted overdosing on painkillers because my mental health was that bad. My mom had to watch me the rest of the day to make sure I didn't have any way to harm myself. Luckily, I was given a sample so I didn't pay the 1200 for it."

• The...
• Taken for less than 1 month
• January 5, 2022

"I started this pill to stop pain my doctor believed was a result of endometriosis, but I also had several fibroids and an ovarian cyst. I was not able to make it a full month on this pill. This medication caused me extreme anxiety. I would not recommend this medication."

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

"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."

• Sam...
• Taken for 6 months to 1 year
• August 3, 2021

"Endometriosis lesions can produce their own hormones, and this medication does not reduce or eliminate that. I took a chance on this because I was trying to delay another excision surgery. However, not only did this drug not help me, within several months of taking it, my pain worsened to the point that I could no longer wait to have surgery."

• Mix...
• Taken for 1 to 2 years
• September 29, 2021

"I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of fullness, unable to sleep, extreme depression and anxiety, hot flashes, mood swings, but after about 10 or 12 months, all except the occasional hot flash and severe anxiety disappeared (I have been prone to severe anxiety and panic attacks my entire life, but this is on another level). BUT I AM VIRTUALLY PAIN FREE (from Endo at least... narcotic pain meds never really touched my Endo pain). Bone loss can be a huge issue, but as I am literally only taking this until I can have a hysterectomy, which can also cause bone loss, my doctor agreed to keep me on it a bit longer. I did run out 2 days ago and am angry with everyone, starving, gained like 6 lbs, my face is breaking out, my migraines are back, and I feel like I am cramping."

• Lim...
• Taken for 6 months to 1 year
• October 12, 2021

"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."

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

"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."

• Toc...
• May 11, 2021

"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."

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

"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."

• Ash...
• Taken for 1 to 2 years
• May 14, 2022

"I have been using Orilissa for about 2 years now. It has worked tremendously at managing my endometriosis pain and has somewhat given me back a normal way of life. However, for the past 6 months, I have been noticing a difference. I have been experiencing joint pains and increased back and abdomen pain. I also had a suicide attempt a few months ago, and since then, I have been prescribed Zoloft. I would recommend it short-term. But I haven't been able to find an alternative long-term solution for endometriosis."

• Sar...
• August 16, 2022

"I have Stage IV endo with heavy bowel and organ involvement. I took Orilissa 200 mg for 6 months that was allowed by my insurance. After a few weeks of taking the medicine, I could tell a significant decrease in my endometriosis pain, but I started developing bladder spasms, which I’d never had before. After 6 months of treatment on the high dose, I was put on 150 mg low dose for up to 18 months. Unfortunately, I didn’t make it much longer on this medicine, as I attributed the new interstitial cystitis pain to this medicine. I’m still not fully back to normal, but the IC symptoms are improving since stopping this med a week ago. It was nice that my endo pain was nearly gone while taking Orilissa, but I felt I traded one pain for another, which is so frustrating. If I hadn’t developed I.C., I would’ve given this med a 10/10 rating."

• Tra...
• Taken for less than 1 month
• November 20, 2021

"I started taking Orilissa to help with heavy bleeding due to a fibroid. Within a few days, I noticed that I was a lot more anxious. I had thoughts going round and round obsessively in my head, which I knew was unusual. Shortly after, I started to wake up in the night and became extremely fatigued and overwhelmed. I wanted to continue to take it for at least two weeks, but mentally became in such a bad place that I stopped after 12 days! Every day thereafter, I started to feel better and better mentally."

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

"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

"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!"