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User Reviews for Orilissa to treat Endometriosis

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Orilissa Rating Summary

User Ratings
10
16% (6)
9
16% (6)
8
13% (5)
7
3% (1)
6
3% (1)
5
3% (1)
4
11% (4)
3
11% (4)
2
0% (0)
1
26% (10)
5.5/10 Average Rating
38 ratings from 38 user reviews

Compare all 76 medications used in the treatment of Endometriosis.

Reviews for Orilissa

MR · Taken for less than 1 month July 21, 2020

“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.”

1 / 10
Sculliii July 21, 2020

“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 150mg Orilissa once a day 3-4 weeks ago. I started 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 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 started taking 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 is 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.”

10 / 10
Brenda · Taken for 6 months to 1 year June 19, 2020

“I was given Orillissa 200 mg for 6 months for stage 4 endo. I did get hot flashes, mild headaches and 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 everyday. 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 150mg Orilissa until I can get robotic excision surgery.”

8 / 10
Cathy · Taken for less than 1 month June 7, 2020

“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.”

1 / 10
Marie · Taken for 1 to 6 months May 29, 2020

“I was reading the other comments and they are actually very accurate. The effects are strong and I personally decided to take some vitamins and drank or ate extra calcium. Some of the effects that I felt more often are the hot flashes, the headache and the mood swings, yet the mood swings were not even near as when I have my normal period. I did like the treatment, I did not have my period for that whole time and it felt great. I had some problems sleeping but I drank melatonin or just meditated till I fell asleep. I didn’t have pain during sex either which was great, cause, as we all know, endometriosis doesn’t make it easy during sex. I actually really truly liked it. Of course, I will recommend to try other things before trying Orilissa, maybe try some hormonal birth control and some naproxen, but remember to always ask your doctor first. If does doesn’t help than ask for Orilissa. Personally, my pain and bleeding were so bad that I didn’t mind the effects of the Orilissa.”

9 / 10
Banupriya · Taken for 1 to 6 months May 29, 2020

“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, 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 an advil/tylenol is much longer than this. I would recommend you trying first.”

9 / 10
shahsbxbxb · 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.”

1 / 10
K · 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. ”

9 / 10
Catz · 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 150mg 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 previously diagnosed anxiety disorder and clinical depression that seem to be slowly getting worse. Now I've been taking 150mg 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.”

4 / 10
JTolls March 30, 2020

“I'll preface my experience by noting my other conditions that made me cautious about taking this medication. I have fibromyalgia, osteoarthritis, bulging discs as well as bipolar, severe depression and anxiety. I've been on it for 10 weeks and I've had a gradual reduction in pelvic pain. It does flare a bit around my cycle, and I was having my period every 10 to 14 days. My Dr. put me on the med after an ovarian cystectomy (laparoscopic) discovered severe endometriosis. So some of the excessive bleeding was also probably from that. Occasionally I feel like I'm burning but it's very rare and short lived. My mood has been fairly stable and not really abnormal. (I take Viibryd, Lamictal, Wellbutrin, Rexulti for that.) I have had a decrease in sex drive which is annoying but I didn't feel like having sex when I had more drive and the pelvic pain anyway! All in all I am very surprised at the lack of side effects and I would recommend trying it if your doctor prescribes it.”

8 / 10
Canary24 · 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. Also felt very emotionally unstable. I could have coped with the hot flashes and moods swings, if it wasn’t for the extreme nausea which was exhausting and a deal breaker for me.”

1 / 10
Jenn · Taken for 1 to 6 months March 9, 2020

“Orlissa is not a pill form of Lupron as some say. Lupron is a GnRH agonist while Orlissa is an antagonist, although both's end result suppresses estrogen, which ultimately suppresses endo. For me with severe endo, I noticed within 2 days it helped my systemic inflammatory symptoms, mental fog, and the pelvic ache I live with daily. I no longer have a uterus due to adenomyosis, so periods are not an issue anymore. I have a love/hate relationship with this drug due to the alternating, intolerable night sweats and night chills resulting in insomnia. The lack of estrogen Orlissa causes makes me apathetic too. I really want to stay on it as I can tell it helps the endo symptoms and pain, but not sure how long I can tolerate not sleeping well.”

7 / 10
Jamie · Taken for 1 to 6 months February 26, 2020

“I started the 200mg 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.”

1 / 10
Rinnelyse · Taken for 1 to 6 months January 30, 2020

“This is my 4th week of taking Orilissa, 150mg once a day. I was on Femara, but it wasn't helping my pain levels at all, took that for a total of 3.5 months. I noticed my pain level decreased in a matter of a few hours on Orilissa. It has been a lot better being pain free and all, but the mental side effects have taken a bit of a toll on me. I take Lexapro and gabapentin along with it, so it does help balanced out the anxiety levels, but randomly, I find myself crying, like wailing at almost any given time. I feel uninterested in anything, work, my hobbies, fun things my husband and I usually do together etc. I don't know if severe pain is worse or severe anxiety. They both pretty much suck. But, I'm working with my doctor to try to level it out, this is the first one that has taken my pain away almost completely. So, I am not giving up just yet.”

8 / 10
LOENDO January 30, 2020

“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!”

1 / 10
Endo Pain Free January 28, 2020

“I have stage 4 Endometriosis, have had a colon redisection due to Endo, and been on the Lupron shot(which was the worst decision I have made). My dr looked at my history and suggested Orilissa has my last option before surgery. I started on 200mg 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 to bad, the headaches didn't last long, the eye vision still struggling, the dry skin was very bad, bruising and blood spot under the skin are very bad. My dr reduced me to 200mg once a day and within 3 week my pain was back and the cyst on my ovaries were back. I went back to twice a day. I figured I can 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 aide.”

9 / 10
Endogirl · Taken for 1 to 6 months January 20, 2020

“I started orilissa (200mg) and was on it for 4 months. It stopped my periods completely, and I had hot flashes, mild mood swings. I was still having pain with sex (but it was during and not after now). I had my laparoscopy a month ago, and finally was healed enough to try sex again, but it was still very painful. I think now that the pain during sex is due to the Orilissa, since this specific pain I've only experienced while on Orilissa. Orilissa did take my endo pain away though (since my periods stopped) , but now that I'm post surgery I'm going to stop taking it and see if it's the source of my problem.”

6 / 10
SO THANKFUL · Taken for 6 months to 1 year December 30, 2019

“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.”

10 / 10
Jess 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 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!”

1 / 10
Leanne · Taken for 1 to 6 months December 13, 2019

“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.”

1 / 10
Sorrel · 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 pain killers just so I could get up in the morning. The first month on Orlissa 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 God send for my bank account. In the past I have become suicidal on birth control but I haven't had any problems on Orlissa. I'm in love with this drug.”

10 / 10
utgoddess · Taken for less than 1 month December 7, 2019

“DO NOT TAKE!!!! I've had all the horrible side effects & even more! This won't help you with the pain much less slow down your bleeding. I wouldn't recommend this to anyone. I hope the FDA pulls it out of the doctor's hands.”

1 / 10
Amie · Taken for 1 to 6 months November 3, 2019

“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 the issue I was almost to the point of admitting myself over the suicidal ideation.”

5 / 10
Jess · Taken for 1 to 6 months October 16, 2019

“I have endometriosis and PCOS. prescribed Orilissa 150mg for 24mos. Took Orilissa from 8/13- 10/13 $5.01 after insurance and savings card . Side effects on orilissa: all over, deep back pain. Headaches and eye strain. Thinning hair on scalp. Acne all over chin. Dry skin. Rash on back and sides. Pain in abdomen. Sour stomach/ and or nausea, insomnia- even with sleep aids. Constantly feeling bad about myself. Mentally you feel “different”. I went to refill my 3rd month since they said it takes a while to see results. The amount after your first two scripts changes based on your insurance. Mine covered 80%- so it is now $181.79. This should be something doctors should be aware of. Not something they have you put in your body for 2 months before finding out the cost jumps up. Side effects as of today, day 3 of no Orilissa: insomnia worse than ever on day 2, day 3 : cramps/ pain in abdomen, back pain everywhere, headache, light sensitivity. Neck stiffness and pain.”

4 / 10
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 1st wk 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 & mentally was hard 1 min I would be fine the next I would feel so far down it was unbearable. I stopped the med after 6 months due to having most of the common, uncommon & rare side effects & the mental state that it put me in. It has been 4 days since I stopped I’m feeling very irritable emotional & 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 b4 u possibly make the same mistake. If you are currently on it & are having issues please tell someone! This med is not worth it. Good luck!”

3 / 10

Learn more about Endometriosis

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Symptoms and treatments

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