Generic Name: Orilissa (elagolix)
For Endometriosis "I have been on Orilissa for a little over a month now for Multiple Fibroids. When my gynecologist first prescribed it, I read the reviews and was terrified to try it! I read some pretty scary side effects several women went through. However, I am happy to report that the only side effects I've experienced so far are a few hot flashes here and there and a headache every now and then. No night sweats or anything else so far. My period was due and never showed up, so that's also a plus in my book! The only thing that concerns me is the potential for bone density loss, but my doctor prescribed vitamin D3 - I'm to take one only once per week to counter bone density loss. She has me on the lower dosage (150 dosage) of Orilissa and prescribed 3 months worth, so I don't know if after 3 months she will have me take Orilissa a bit longer. I will come back on here after I have completed 2 full months to update how I feel."
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."
For Endometriosis "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!"
For Endometriosis "I started Orilissa along with Norethindrone to counteract the side effects. The first two weeks were not bad, but I felt like my period was extremely painful, more than usual, and I bled for 10 days when I normally stop at 6. The 3rd week, I started to get super nauseous and had bad headaches. I slowed down on eating. The 4th week, I could barely eat at all without getting sick. My eyes became blurry, and it was hard to see. So I called off work and went to an eye doctor that said my eyes were fine, but they recommended I get off the medication because it was messing with my vision. I called the doctor that day, and they said I could stop both medications. I was hospitalized on day 3 of not taking it. I stopped eating completely and couldn’t even hold in chicken broth. I was extremely lethargic, and I was taken to the ER while going in and out of consciousness. These medications made my already existing anxiety and depression spike the whole time. DO NOT TAKE THIS."
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."
For Endometriosis "I took one dose of this drug Orilissa, and four hours later I was feeling deeply suicidal. I actually did self-harm later that night. I also was nauseous and had blurry vision. I have bipolar disorder and was very concerned about the mood effects. IF YOU HAVE BIPOLAR OR DEPRESSION, DO NOT TAKE ORILISSA. I have never had active suicidal thoughts until I took this."
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."
For Endometriosis "I have been on Orilissa for 1.5 years. While my endo pain is almost non-existent, my anxiety has hit an all-time high, and depression/suicidal thoughts are daily. Self-harm started, and that scared me enough to know that it's time for me to be off this medication. If you suffer from anxiety or depression, please be more self-aware and know when to get off this medication. I thought I could handle it. It sucks having to trade mental health for pain. I wish there were more solutions. It was effective, but the side effects were dangerous."
For Endometriosis "I had a horrible experience. I was prescribed this pill because no other birth controls could help with my pain, blood clots, and cysts. I did not do well with a pill that has a lot of estrogen in it, so my doctor thought this would be good and that I might have endo. After 3 1/2 weeks of taking it, I started to have horrible pain in my chest and back, so much acne that won't go away, and bloating so bad that I can't even wear pants. I had terrible abdomen pain that didn't stop and made it very hard to sleep. I also had terrible headaches and numbness all over, as well as nausea. I waited about 6 days, wondering if this was a flu, but on the 7th day, went to the hospital because I couldn't take it anymore. They ran a multitude of tests on me and said I was fine. They said they believe it to be the Orilissa. I went to my doctor after that to confirm, and she said to get off of it right away. I would never recommend this to anyone ever!"
For Endometriosis "I cannot even begin to understand how this drug made it past clinical trials or how anyone could tolerate it. I had a laparoscopy 3 weeks ago and was put on this drug following surgery in an effort to prevent endometriosis from regenerating. The first day I took it-nausea and my first hot flash of my entire life (I am 29). This was accompanied by feeling out of it and like I was in a different body. The next day I took it and the following morning with SEVERE stabbing abdominal pain that wouldn't quit. Then came the waves of nausea and the leg shakes, followed by explosive diarrhea. In the following hours, I felt like I had the flu. I went to my surgeon, and he told me to discontinue this immediately. He informed me that some people can tolerate it and some people simply cannot. He also raised the concern of suicidal thoughts while on this med and said we can't have you walking around being suicidal every day. PLEASE BEWARE OF THIS DRUG AND THE HORRIFIC SIDE EFFECTS IT CAN BRING!"
For Endometriosis "I didn't last a month on Orilissa medication for endometriosis. Most troublesome side effects included: 1.) disastrous, mobility-limiting joint pain in my knees, wrists, hands, and arms 2.) three migraines within less than a week -- if I were so lucky as to not have a migraine, I had a heck of a headache instead. 3.) awful back pain. 4.) mood disturbances. Orilissa is terrible, and the Ori For Me program stonewalls patients by providing inadequate answers to concerns. This medication doesn't treat or cure endometriosis and only serves as a potential short-term band-aid for pain management, so please consider the dramatic side effect profile carefully before trying it yourself. Endometriosis patients deserve better than this."
For Endometriosis "Orilissa has 100% changed my life. I've been on this pill for 8 months now, and am so happy to say that I'm pain-free. When reflecting on how horrific endometriosis was, it's like I have blossomed into a completely different person today. I definitely didn't think a pain-free life would be possible for me, but here I am today!! THANK YOU to the makers of Orilissa. I can finally exercise, have sex, and be happy again! I went from being completely debilitated to getting a new lease on life. Please continue making this drug and finding ways to improve the time span in which users can safely take it. I don't know what I will do once the 2 years are up."
For Endometriosis "I took this pill, Orilissa, for 3 days. The first day was not too bad. Started to shiver like I was cold, but it went away after 15 minutes, minor cramps in the abdomen area, with a lot of diarrhea, and feeling hot inside, which is not that bad. I’d rather deal with that than the pain I was dealing with on a day not being able to walk due to the pain. Day 2, I had some words I had trouble getting out, but like the shivers I got, it went away after about 15 minutes, so I did not think anything of it. I also had joint pain all over, and my hot flashes got worse. Day 3: Not able to talk right, my doctor's nurse instructed me to go to the ER due to me talking like the pig on Looney Tunes (IIII JJUST WWANTED HHHELP). That was a sample of how I sounded. I still had joint pain, shortness of breath, nauseous diarrhea, feeling extremely anxious, blood pressure was 164/96. This drug was not for me, I had high hopes, and now I just pray I can keep my job of 14 years."
For Endometriosis "I've had 8 surgeries for endometriosis from 7th grade to 42, but because of all my surgeries... they've been leery to do a hysterectomy. Tried 150 mg Orilissa and it did nothing, in fact, I feel like I just had extra side effects: migraines, hot flashes, mood swings, etc. It didn't stop or help bleeding or pain. They upped me to 200 mg 2x/day and bleeding has mostly stopped. I still have pain and cramping, and side effects have increased. Now headed to have a complete hysterectomy with 2 surgeons at the same time because they expect a very adhered abdomen and complications. Menopause will suck, but at least I have an end point in sight now. I've also been on Depo and Lupron multiple times and feel like those worked better. I can't sleep well ever, constant migraines, hot flashes, and sweating like crazy... at least it's going into winter because summers are blazing hot here. Orilissa was a big fail for me, but I'm happy it helps some of y'all."
For Endometriosis "I want to share my positive experience with this medication for those who are worried about taking it when reading all the unwanted symptoms some are having. I have stage 4 endometriosis, and my pain was really bad. I also have pelvic cramps, cramps in my vagina, and left side lower back pain. This endo caused so much depression and pain. While waiting for my surgery, this was my only option. At the beginning, I had experienced various symptoms such as nausea, bone and muscle aches, headaches, and mood swings. I gave myself a month, and slowly, they started going away. I am also eating healthy and doing exercise every day to keep myself healthy. The medication is helping me! I am happier after taking it. The side effects listed on Advil/Tylenol are much longer than this. I would recommend you trying first."
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."
"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 :-("
For Endometriosis "Stay away! Unfortunately, due to doctors or the people that tell them what they can and cannot do, we ladies in excruciating pain aren’t allowed real pain meds for flares. Instead, we’re given experimental drugs that don’t work and only lead to more problems. This medication gave me such bad hip and joint pain that I could hardly stand let alone walk. I was fresh outta 2 back to back surgeries and this pill only made my body trauma worse with ZERO pain relief. Endometriosis is real and painful as anything and it’s about time it be taken seriously."
For Endometriosis "Have been prescribed Orilissa by gynecologist for pelvic unknown pain been on it for 2 weeks now and I feel terrible. Feel like I have a fever even though I don't, had several episodes of painful headaches, terrible nightmares can't sleep 8hout in a row, nauseous can't eat at all for many days in a row now. Feel depressed like crying all the time for no reason, very on edge and I just lash out at my partner constantly for just being in the house and breathing. This medication is really hard to take as side effects are huge. Side effects of this medicine are as bad as Paxil when I started it 15 years ago. The first month was awful but my anxiety got better after the first month contrarily to Orillisa which has had no effect on my pelvic pain so far. Be really careful with depression and suicidal thoughts this medicine is definitely not for everybody and should carry the "black box" suicide warning box, it does have the warning but not the full black box warning."
For Endometriosis "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 Endometrosis 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!"
For Endometriosis "DO NOT TAKE ORILISSA! 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."
For Endometriosis "I have endometriosis and fibroids. My estrogen was way too high. I was a very emotional person, extreme PMS mood and pain. I had painful ovulation as well. The last two weeks of my cycle, I was a raging hormonal lunatic. I'm on my 4th week of Orilissa, and I'm a whole new person. I feel like I did when I was 21. My joints ache occasionally and sometimes have spotty memory, but my quality of life has done a 180. I've begun vitamin D supplementation in hopes of preventing bone loss because I love this drug and hope to continue it as long as necessary."
For Endometriosis "I just need to share the experience I had with Orilissa. While Orilissa was a miracle for my endometriosis pain, which is severe, it caused me to suffer from crippling depression and suicidal thoughts. I’ve now been off of it for 3 weeks. I’m currently dealing with my endometriosis pain because while it is horrific, I’m no longer a shell of myself trying to determine the best way to off myself. Please, please look out for your mental health while on this medication. Until I realized Orilissa was the cause of the issue, I was almost to the point of admitting myself over the suicidal ideation."
For Endometriosis "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 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!!"
For Endometriosis "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."
