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User Reviews for Orilissa to treat Endometriosis

Orilissa has an average rating of 5.7 out of 10 from a total of 63 ratings for the treatment of Endometriosis. 44% of those users who reviewed Orilissa reported a positive effect, while 35% reported a negative effect.

Orilissa Rating Summary

5.7/10 average rating

63 ratings from 61 user reviews.

Compare all 76 medications used in the treatment of Endometriosis.

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Reviews for Orilissa

Z2020 · Taken for 1 to 6 months April 26, 2021

“The positive is that it definitely helped with my Endo pain, I had been going to bed with severe pain each night and was woken up by it as well, and this definitely fixed that within a few weeks. The downside is I did get severe daily headaches and vision changes that affected my ability to work, as well as shakiness and a sharp increase in anxiety and depression. I lasted 2 months but I’m looking at other options that won’t affect my ability to function as much.”

5 / 10
KikiC · Taken for 1 to 2 years April 2, 2021

“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.”

8 / 10
Lilgb · Taken for 6 months to 1 year March 15, 2021

“I had Orilissa pushed on me by an obgyn, and I took it, desperate for some kind of relief. It barely helped my pain and symptoms and came with bad side effects, like my hair falling out by the handful. They had given me an “ori for me” nurse who would call me to see how orilissa was working for me- as soon as s I started having negative symptoms, the nurse abandoned me and my “ori for me” experience abruptly ended. I stopped taking this and my hair filled back in”

1 / 10

Frequently asked questions

Anonymous · Taken for 1 to 6 months March 5, 2021

“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.”

8 / 10
Mander14384 January 14, 2021

“I started Orlissa 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”

1 / 10
Solong · Taken for less than 1 month January 8, 2021

“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 estragon in it so my doctor thought this would be good and that I might have endo. After 3 1/2 weeks of talking 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. There 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!”

1 / 10
Patsy · Taken for 1 to 2 years February 6, 2021

“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!”

1 / 10

More FAQ

Ace January 31, 2021

“This medication gave me my life back. I was incredibly hesitant about going on Orlissa and postponed as long as possible. I had already had excision surgery and a hornomal 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. Orlissa 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 where 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 every body is different, and giving this medication a try was worth it.”

10 / 10
Header header · Taken for less than 1 month September 24, 2020

“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 rather deal with that then the pain I was dealing with on a day not being able to walk do 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 any thing of it. I also had joint pain all over and my hot flashes got worse. Day3 Not able to talk right, my doctors nurse instructed me to go to the ER. Due to me talking like the pig on loony toons ( IIIII JJUST WWANTED HHHELP) That was a sample on how I sounded like 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.”

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
Trixie November 13, 2020

“Stage 2 endo with POS I had the surgery to remove the endo and started taking the 150mg for pelvic pain. It did not help me at all. I felt all of the side effects. So my doctor increased my dosage to 200mg. This pill has helped with pain with intercourse. However, vaginal dryness and numbness occurred quick 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 w/o actually drinking alcohol. I only been on Orilissa for 3 months and decided to stop it b/c the side effects were increasing. I decided that I rather deal with the pain of my endo than the side effects. Even after stopping the pills I still have severe migraines & sharp spine pain. Still have endo pain and now a list of other health conditions.”

5 / 10
Cola Gal · Taken for 6 months to 1 year November 27, 2020

“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 200mg 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 adhessed 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.”

2 / 10
LindzEndoWarrior · Taken for 1 to 6 months July 23, 2019

“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 ”

3 / 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
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
Leslie NOPE · Taken for less than 1 month May 10, 2019

“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.”

1 / 10
Bee · Taken for 1 to 2 years March 5, 2021

“I was diagnosed with endometriosis when I was 17 and had a laparoscopy the following year. I have been on almost every birth control or endo treatment and this is the 1st med that I've been able to take that actually helped my symptoms drastically. I didn't experience most of the initial symptoms as I have been on a continual pill treatment for the last 10 years, so I haven't had a period or PMS symptoms for nearly a decade. I read many comments saying that they took it with a contraceptive or other hormonal pill, and that is a big No-No and the main reason why they had such horrible side effects and experiences. I did/do experience side effects but I would rather have hot flashes, joint pain, trouble sleeping and night sweats than live every hour of my waking life with unbearable cramps, bloating, back pain and all of the other symptoms I had with my endometriosis. A live saver and a must try treatment for any woman suffering with Endo.”

10 / 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
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
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
Prayingthrough October 1, 2020

“My doc prescribed 200mg of Orilissa. This is my fourth day on the medication and initially I was optimistic about my experience as I didn’t have any side effects. Today, being the fourth day, I started my period and I’m passing clots again. I’m moody and I already struggle with anxiety and depression. So now I’m skeptical about my experience moving forward and I’m not looking forward to things getting worse. I’m going to fight to maintain my mental status with prayer, a healthy diet and a ton my positive surrounding energy and laughs.”

1 / 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
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
Emma · Taken for 1 to 6 months October 1, 2019

“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!!”

10 / 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
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
HAZkat · Taken for less than 1 month September 5, 2020

“I’m on week 2 of taking Orlissa BID- i just finished my period (first one on Orlissa) and for the first time in my life had no pain during a period. My daily pain has decreased significantly as well. I have not noticed any mood changes, I already have anxiety. I have noticed some insomnia, the side effect that is most affecting me though is getting nauseous when eating and not being hungry at all. I’m having to eat small portions throughout the day, and force myself to eat them (which for me is difficult because I forget to eat lunch all the time anyway). I’m finding ways to handle that. It’s actually what brought me to this site. Worth it to not be in pain personally.”

10 / 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

This 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.

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