User Reviews for Orilissa oral

I was prescribed to take the twice daily 200mg dose of Orilissa to help with pain from endometriosis - pain with sex/orgasming, awful periods, cramping, lower back pain and IBS symptoms cause by endo. My insurance refused to cover the drug so I was being provided samples from my doctors office. My doctor started me on a one-month trial which actually went pretty well. , Besides a nonexistent sex drive and some vaginal dryness I had no other side effects. I continued to be on the Orilissa for six more weeks. Unfortunately my doctors office ran out of samples so I had to be off of it for two weeks. Once they got the samples back in I went on it for another three weeks and thatâ??s when things really got bad. On top of the lack of sex drive and vaginal dryness I had experience before, I started experiencing extreme mental fogginess, extreme depression and anxiety, hormonal mood swings, lack of appetite, nausea, more frequent IBS symptoms of constipation or diarrhea, and it was doing nothing for my endo pain. The last straw for me was when I started experiencing what I thought was appendix pain and then ended up being liver pain. My liver became extremely inflamed and swollen because of the drug and a blood test confirmed high levels of liver enzymes acting like my liver was trying to fight off the beginnings of liver disease. Because of this, it scared me enough to stop the taking Orilissa since my liver was struggling to process it. Iâ??m now treating my symptoms more holistically but having stage four endometriosis I most likely will end up having surgery. Read More Read Less

Reading these comments just goes to show how differently everyone reacts to a medication. I have been on 200 mg of Orilissa twice daily for 3 months now. I have 3 more months, for a total of 6 months on the medication. The first couple months were brutal, as other people stated. I had horrible hot flashes, I could not sleep well, my joint pain was very uncomfortable, I had some nausea, and I would occasionally get a headache (taking advil helped). However, I have noticed a significant decline in these side effects after reaching my half way point. I can sleep so much better now, my body doesn't ache as badly, and I don't get as many hot flashes or nausea. As soon as I started the medication, I had no more periods, which has been AMAZING! I have been suffering from endometriosis since I was around 16 years old (I am 24 now). Everyday I would have lower abdominal pain, constant cramping, bloating, gas, painful bowel movements, painful sex, and heavy periods. I was on a birth control since high school, but it did not subside my pain at all. Before starting the medication, I had a laparoscopy performed and then my doctor started me on Orilissa to kill off any endometrial tissue that was left over that she could not get with the laser. So I'm not sure how well Orilissa works alone, but paired with my laparoscopy, the pain and discomfort I was feeling for years is COMPLETELY GONE! The side effects at the beginning have been well worth it for me. One complaint I have about the manufacturing of the drug is that it is very difficult to pop it out of the packet. I wish they would fix that because it hurts my thumbs! I never experienced any mood swings, no depression, and no increase in my anxiety. My side effects were more physical than mental. I did gain some weight unfortunately. So far it's been about 5 extra pounds, but I know once I get off the medication my metabolism will speed back up again. I also take 4 tablets of Citracal per day to help with my bones. Good luck! Read More Read Less

Wow, where to begin. I started feeling side effects on day 1 of taking Orlissa. I was just so blank that day. Had a terrible headache. A few days in me and my husband had to actually make a plan for when i was home along so i wouldn't be alone. I had suicidal thoughts ( i do have a history of depression.) i couldn't focus on anything it felt like i had dementia. Blurry eye sight, i'm holding onto water like crazy, i could hardly lift a gallon of milk my bones hurt so bad, can cry at anything. You name it i got it. I just stopped taking the medication per dr advise. I was warned that this can make your BC ineffective. I use the depo shot and never had any phantom period pain or bleeding. But with this i have all the pms symptoms too? I dont understand how this drug made it to the public. I feel worse with the Orlissa symptoms then i do with my everyday terrible pain. Even if this drug took care of my problem i would flush it down the toilet. It's not worth it. Read More Read Less

I started taking 150mg of Orilissa once a day in December 2019 as requested by a PA in the gyno department. I managed to only get through two months of it before my main Doctor requested I stop taking it. I didn’t experience all the crazy side effects everyone else has mentioned, maybe I just didn’t take it long enough. The only thing I’ve experienced is really bad acne and it has stopped my menstrual cycle. I could blame the weight gain on Orilissa but I also broke my ankle around this time So I can’t say for sure what the true reason for weight gain was. As far as pain relief goes I didn’t really notice a difference. I still had pain with sex sometimes. I did experience some joint pain at times. It was a sharp throbbing pain that didn’t usually last long. My main Doctor performed a laparoscopy on me in 2017 to remove all the painful growth I had. The three years after that surgery were the best I have felt until the growth returned again in 2019. The best option I’ve found is to have the growth removed. Best of luck to those who decide to try this medication. I guess I got lucky and was able to avoid all the horrible side effects. Read More Read Less

I am 41 years old and have dealt with endo for 19 years. I have had 5 lap surgeries for removal. I have had one regular surgery for removal of a endemetrioma tumor the size of a grapefruit in 08 and now I have another in my abdominal wall. I tried this medication for the last 6 weeks prior to hysterectomy and I have not slept, had horrible mood swings and literally cry 4-5 times a day. Iâ??ve never been so emotional. Believe me I have tried Lupron injections, hormone therapy, BC continuously. I have had a prominent fertility dr work with me to try and relieve my discomfort and he was the surgeon that removed the first tumor since I had never had children. This medication might work for some but it has only stopped my periods thatâ??s it. Everything else is the same and I gained insomnia, nausea, headaches, depression and major emotions.Read More Read Less

NOT WORTH IT!! I let my OBGYN convince me to try this drug but I cannot believe this drug even made it past trials. hot flashes, migraines, joint aching, nausea, soooo moody. I did not feel like myself at all and my anxiety kept increasing. I was on it for 10 weeks to really give it a shot and it did nothing for my periods or endo pain. The anxiety got to be too much and I stopped it cold turkey per my docs recommend when it was clear the side effects outweighed the "benefits". stopped taking it and plunged into a depression. This drug messes you up. Its similar to the Lupron shot and that drug has a list of nasty side effects too. I've rejected these medical "cures" and "gold standard treatments" for endometriosis and have since reached out to an actual endometriosis specialist/surgeon, not an obgyn, to see if he has the skills to properly excise the disease and bring relief. This drug is an absolute joke of an avenue of temporary management and masking of endometriosis symptoms. It took me months to feel normal again. Do your research and be your own advocate! don't just take your docs word for it that its the best thing for you. Read More Read Less

I have been taking Orilissa now for two weeks. Orlissa has helped a little with the pain. The side effects of Orilissa has taken over my life, I start having night sweats, very bad headaches,depression, mood swings, not been able to sleep at night and just crying for hours. I have never felt like this before. My obgyn don't want to do the surgery so she decided that she wanted me to try orilissa so I agree to try it but it's not working. Orilissa has taken over my life in less than 2 weeks. Please don't let your doctor talk you into taking this medication. Read More Read Less

I am SO thankful for Orilissa. I went from being completely crippled by endo, to living a normal life again. No more pain, and no more periods. It's insane how much my life has turned around compared to the shell of a person I used to be! While I'll admit that I was scared to take it at first, the side effects tapered off as time went by, and now I don't have any endo related issues. It has given me a new shot at living a happy life, and I will be forever grateful!

i did a couple reviews previously. i was on this drug for almost 6 months. at the end i felt so emotional and upset and just not myself. i have been off this drug for about a month and a half. i feel so much more like myself the pain isnt constant. and my sex drive has increased as well. speaking with my ob and she said to stop the drug and get surgery again in march to clear all the endo. i myself did not approve with this drug. all the side effects and pain is not worth taking a pill twice a day.Read More Read Less

Please please please do not let your doctor convince you to take this drug! I finally let my OBGYN convince me to go on it, as my Endo is so severe, it can’t be surgically removed. Regretted it from day one. Excruciating back pain, to the point I could barley walk. After being on it for only ten days (and taken by ambulance to the ER three times due to severe abdominal pain/trouble breathing) I said screw it and quit. In only ten days, 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 basketball shorts. 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 little over a week, and was thankful I had stopped taking it, despite my gynecologist 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 a weeks after stopping, and would rather suffer from the Endo pain then go through that again!Read More Read Less

This medication is absolutely awful! I had a laparoscopic surgery December 2018 at the age of 20. In January I started Orilissa 200mg twice a day for a month. I had severe headaches, hot flashes, bloating, fatigue and depression. I loss a good amount of muscle and my bones and joints throbbed all the time. I lowered the dose to 150mg once a day and I had absolutely no change at all. Not to mention I had no sex drive, completely dry down there and my skin and hair become dry as well. I am in nursing school and I could not focus on studying. My headaches were so bad it affected my eyes and even put pressure in my ears. I developed insomnia and lost lack of 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. Read More Read Less

DO NOT USE!!! I want to explain why I quit taking this medication after 3 days & why I want to warn other ladies questioning this medication (like the others that have also commented on this page). Day 1: I had blurred vision within an hour, migraine headache, confusion, didn't stop the bleeding or feel better internally. Insomnia, hot flashes, night sweats, lost all feeling in my toes and my feet were ice cold Day 2: same symptoms with the same reaction and my bones hurt everywhere Day 3: bloating, abdominal pain, woke up with a migraine, ears ringing, ovaries hurt, still bleeding, migraine got worse within the hour, same symptoms listed above. This particular night I started to have hallucinations that the whole house was shaking & about to get broken in. During the day I would eat when I wasn't hungry and couldn't focus at work. I quit taking it on day 3. Oddly enough, my dog (furbaby) quit eating the day I started to take it and started eating the day quit. As other ladies have mentioned, you start to question your sanity, your mental health and whether 3 months is worth it. DON'T!!! this medication will ruin your life and your bones/liver (I went to the chiropractor, during my normal adjustment, he pressed on my right side & my liver was inflamed), your auto immune will flare up among many other things. This disease isn't for the faint of heart and only the strong can survive this. I wish I had answers but so far the only thing that has helped me was taking out my IUD (Paraguard), having a tubal ligation & getting off all medication. I still hurt but nothing like it was. I also have ovarian cysts, so this probably doesn't help. I hope that this helps someone else that is listening to their doctor & they take this off the market as soon as possible. This doesn't help enough of us. I don't feel like myself yet but hope it will wear off sooner than later.Read More Read Less

this is an update to a review i did a few months ago. i have been on this drug since July of 2019.but have been dealing with endo since october 2017, and was previous on the luperon from july 2018-2019 the first couple of months with orilissa were pretty easy the drug seemed to be working the way it should. but then the past few months I've been extremely emotional i can literally cry over everything, the heat flashes happen daily. and i feel like I'm in pain constantly. cramping has not stopped at all and i dont feel myself getting better. i speak with my gyno next week and to see what the next steps are going to be. I'm hoping after putting my body through so much trauma i'm hoping once this is all over i will feel somewhat normal and continue with my life, and I'm hoping infertility is not in my future.. Read More Read Less

I started Orilissa late in August 2019 to help confirm endometriosis versus just GI problems. The first six weeks were pretty amazing! I felt the best I had in a long time. I did have some nausea and dizziness but those side effects went away. I have been struggling with insomnia due to hot flashes but that has been the worst side effect so far. I am now starting on the third month and have started having worsened depression, some joint and back pain and now also have worsening prolapsed bladder issues. Read More Read Less

I started Orilissa 4 months ago - 2 months was before my laparoscopic surgery for Endo where stage 3 was diagnosed (ended up having an appendectomy too). Prior to taking this drug, I had taken Lupron for 6 months. Both drugs caused major menopausal type symptoms - hot flashes and night sweats. My periods totally stopped all together, which for me was a God send! However, just this weekend, out of nowhere while still on the Orilissa, I am having a period again - and just as painful as before! Iâ??m not sure if my body is just no longer responding to the Orilissa or what?! May be time to stop taking it. Read More Read Less

After having my second surgery for endometriosis I decided to try Orilissa over the Lupron shots. I did 3 weeks on 150mg but had to up it to the twice a day 200mg because of the pain I was still in. I was crippling pain. I am now a month and one week into 200mg and now not only am I still in pain but also dealing with the server side effects of hot flashes, severe migraines, joint stiffness, and serve fatigued. Would not recommend this medication. Just waiting on insurance to get back on Lupron Depo shots for my treatment.Read More Read Less

So far I have been on Orilissa for 1 month and had a decrease in pain with what now appears to be an early period. I say that because the pain was so decreased I couldn�t possibly think it was a period just spotting from starting new medication. I also notice the nausea off and on, hot flashes which make sleeping difficult and occasional headaches. Currently I prefer the hot flashes and insomnia to the extreme pain I was in before.

I was on Orillisa from 06/19 - 08/19 to help prep for my fourth round of IVF. The side effects were horrible. The first 4 days i had hives on the palms of hands, cramping, and nausea which all subsided after about a week. For the duration of the 2 months i was on it were nigh sweats, hot flashes (10- 12 a day), terrible insomnia. It took 1.5 months for the gnawing endo pain to stop. Currently waiting for my cycle to begin to I can move forward with my 5th round of IVF. I'm not sure I would recommend this drug, perhaps as a last resort of women interested in a hysterectomy due to the pain. This did seem to exacerbate my autoimmune disease to a small degree. I am wondering how long it will take my cycle to start back up and what are the long term side effects of this drug? Read More Read Less

I have bad pelvic pain due to endometriosis that is present majority of my time. Orilissa did take away my pelvic pain but after just three months I noticed extreme joint pain in my knees, ankles, feet and hands. It hurts to walk in my feet. My anxiety increased significantly. I could not sleep through the night. I became more emotional. My periods were all over the place...one month was two weeks late. I have decided to go off of this medicine because I would rather deal with my severe pelvic pain than all of the side effects from orilissa. Please do your research and really think before you start this medication. Read More Read Less

UPDATE: This is an update from a previous review. I have been on orillissa for almost 10 months and the side effects are almost unbearable. The hot flashes have become more frequent, but that is tolerable. I've started to experience the insomnia that a lot of people have described but even that is tolerable. The joint pain is terrible. Sometimes I feel like an 80 year old arthritic person. Horrible pain in my hips, knees, and elbows. Stiffness upon standing. I pray that these symptoms resolve whenever I can stop taking this medication. The only positive is that the endometriosis pain is completely gone. I just wish that there was a better alternative to endometriosis treatment other than this drug and its horrible side effects. I have had a partial hysterectomy with left ovary removed and a sigmoid colon resection. I will more than likely have the other ovary removed if I have to stop this med and the endometriosis pain returns. :-( Read More Read Less