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2.9 Overall Rating

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Most voted positive review

33 People found this comment helpful

This medication works but it comes at price. My endo pain completely disappeared while on Orlissa, however I started to feel like I was in the wrong body. My entire body felt off, I couldn't focus or sleep and the hot flashes and nausea were outrageous. I had surgery in March and my symptoms were back less than 6 months later which is when I went on the Orlissa 200mg 2x a day. I really wish this w...

Most voted negative review

5 People found this comment helpful

First of all this drug costs an arm and a leg to get. I was only able to use it for 1 month because the side effects made me want to crawl out of my skin. My endometriosis pain decreased somewhat but you are definitely paying it forward with the hot flashes, nausea, and headaches. Be careful when considering this drug, it might be very useful for pain but you'll be experiencing a whole slew of men...

Shared reviews and ratings

Rach | 19-24 | Female | On medication for 2 to less than 5 years | Patient
3/1/2024
Condition: Endometriosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I see that som people had negative side effects, but when I took orilissa, it changed my life. I had such bad cramps from endo and heavy bleeding, where normal pain meds could not help me and birth control was too painful to manage still. It was pain and bleeding for 3/4 a month. I felt like I was going crazy. I had orilissa when it first came out, and I was on the maximum dosage for 2 years. I didn't notice any side effects, I was just relieved the cramps and pain stopped. After I stopped the medication and when my normal periods resumed I was more than pleasantly surprised that my symptoms never came back, even after a couple years of being off the medicine. Read More Read Less

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MWReddick | 45-54 | Female | On medication for 1 to 6 months |
1/27/2024
Condition: Other
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

I like many wish I would've taken this time now before starting this medication. It hasn't been the cost for me but the horrible side effects I've never felt in my life prior too. The hot flashes are undescribable, the insomnia, and the struggle for energy day by day is the worse of it all. I have had to endure so much prior to this cancer and chemo being two things and never did I feel like I was just barley living. My attention span is very difficult. It's hard to get up some days just to do my daily occupations from lack of. I was prescribed this RX due to having ovarian cyst and it was too risky to go back in after having a hysterectomy to remove my ovaries that kept developing cyst so here I am. Finally coming up on my six month period and I will never take this again. I just pray my body readjust once it's over. Read More Read Less

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Kate C | 25-34 | Female | On medication for less than 1 month | Patient
5/4/2023
Condition: Endometriosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

I was prescribed Orilissa 150mg after my most recent laparoscopic surgery for stage 4 endo. My doc explained this is not a treatment for endo but will temporarily suppress estrogen in order to decrease pain and my doc stated it would potentially keep endo growth from progressing because I have a high risk of it returning. I knew I would only be on this medication after surgery until we were ready to start trying to conceive (roughly 6 months or longer) but I couldn’t be on it for more than 3 weeks because of constant light bleeding, hot flashes, and gradually more intense mood swings and crying spells. I had to get off it. The only good thing was I wasn’t in pain…. But I prefer the pain honestly. Also, I’m 31yrs old. Read More Read Less

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AE | Female | On medication for 6 months to less than 1 year | Patient
3/20/2023
Condition: Endometriosis
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

After laparoscopic surgery for endometriosis, I was prescribed Orilissa. My doctor gave me the lower dose first. During the first 4 months when I was on the lower dose, there was no improvement on my endometriosis pain. Then, my doctor gave me the higher dose and I was on the higher dose for almost 8-9 months. The higher dose did help me with the endometriosis pain and stopped my period completely, but I also started to feel various side effects. The most important side effects that I experienced were joint pain, bone pain, nerve pain, and depression. My OBGYN doctor kept sending me to other doctors for the side effects like neurologist and rheumatologist. Finally, my rheumatologist doctor called my OBGYN doctor has told him about all my side effects and that I should stop Orilissa immediately. Now, 2 years after stopping Orilissa, I still have joint, bone, and nerve pain and I feel much older than before. Read More Read Less

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Anonymous | 45-54 | Female | On medication for 1 to 6 months | Patient
2/15/2023
Condition: Endometriosis
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

Pain and bleeding were controlled very well but joint pain was crippling. I lasted 5 months and threw it in the trash.

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Gingeraffe | 25-34 | Female | On medication for 1 to 6 months | Patient
1/26/2023
Condition: Endometriosis
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I've had endometriosis for close to 20 years and it's been miserable. I was getting 2 heavy periods a month and so much pain between them that I could barely function. My gyno prescribed this med as 200mg 2x daily and I've been on it a month and I'm already noticing a huge difference. I didn't get my second period since starting and my endo pain has seriously decreased. My doc was very up front that the drug puts you into menopause essentially and the side effects are basically menopausal symptoms. I have another condition that causes things like joint pain, brain fog, insomnia, anxiety, etc so I really didn't notice anything different other than I have had some really bad hormonal acne and some hot flashes (though not as bad as I was expecting). I don't know how long I will be able to stay on it because of changes to my insurance, but for now I'm really happy with it. Even if it ends up not being a viable long term treatment at least it will be in medical records that I tried it so when I try to get a hysterectomy insurance can't say that we didn't try every other treatment option first.Read More Read Less

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Whitney | 19-24 | Female | On medication for 1 to 6 months | Patient
1/13/2023
Condition: Endometriosis
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

I had an ovary and tube removed due to years of pain and cysts. I went on Orilissa to prevent the other endometriosis sections to grow. I haven’t even completed my second month of medication (I’m 24 years old). Severe/multiple extreme hot flashes and night sweats, no sleep, major mood swings, lots of depression and anxiety, I still have pain all over my lower abdomen, joint pain, my body/period does whatever it wants when it wants and it’s only weird spotting, and I’ve been off the medicine a few days and still waiting for the side effects to wear off. Glad this works for some women, but definitely NOT me!Read More Read Less

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orallyssa | 25-34 | Female | On medication for 6 months to less than 1 year | Patient
1/3/2023
Condition: Endometriosis
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I wish I had this sooner. My abdominal pain has completely subsided. I know people have had their rough experiences with it, but I am so thankful to feel like I am almost cured. I did have spotting at the beginning, but other than that no major side effects. I even feel like my depression has gotten better since I started taking it.

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R | 13-18 | Nonbinary | On medication for 1 to 6 months | Patient
12/4/2022
Condition: Endometriosis
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

Started taking orlissa after being diagnosed with endometriosis, within the first few days of taking it I noticed my endo-bloat was gone! This gave me a completely flat stomach which I haven't had in a long time. The intial symptoms in the first two weeks such as hotflashes and moodswings were actually almost nonexistent for me compared to other reviews. The only symptoms I had was daily spotting and nausea. Overall, my cramps and lower back spasms have already subsided almost to none. However, starting in the 3rd week I began to experience joint and bone pain in my legs and weakness in my body. I'm only 18 so feeling more like im 48 and not able to climb the stairs without my bones hurting is awful for me. Both the bone pain and period pain make it difficult to function in daily life but the period pain is more manageable with heating pads and such until I can get a hysterectomy in 3 years. So due to the bone and joint pain I'll have to discontinue orlissa.Read More Read Less

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Jae | 35-44 | Female | On medication for 1 to 6 months | Patient
8/27/2022
Condition: Endometriosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Suffered for 15 years from excruciating pelvic pain, excessive bloating, chronic fatigue. This medication started working after the first month of taking it. No more periods is amazing! Worst side effect was hot flashes. A true miracle medication that has given me my life back!

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Dee | 25-34 | Female | On medication for 1 to 6 months | Patient
8/4/2022
Condition: Endometriosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

When my doctor brought up orillisa as being an treatment option I of course went home did my research, I was reading all these horrible reviews I am stuck with this doctor as I tried to already go get a second option from a different doctor who then referred me back to my doctor saying she’s the best one who will help you, I was going to just go with what she said. After reminding her SEVERAL times I have been suicidal multiple times in my life and some when I am out on hormones she said “this one’s different it’s a beta blocker” went home started taking it. I was shocked at how well it did work for blocking my everyday period pains and period but then i started feeling pains I’ve never felt before my lower back especially. I had to bring my partner in with me to vouch that I can’t go on living how I was feeling in that poison. DO NOT HURT YOURSELF STAND UP AND REFUSE THIS MEDICATION Read More Read Less

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Melissa | 19-24 | Female | On medication for less than 1 month | Patient
7/31/2022
Condition: Endometriosis
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction

I was prescribed Orillisa 150mg for endometriosis due to failing my 6 month post laparoscopy by still having bad pain. I was only able to take one dose due to the horrific side effects. I took it at night and my symptoms were: insomnia, anxiety, panic attacks, pain in my upper right side, and worse endo pain than before. In the morning when I was finally able to sleep I woke up still have worse endo pain and the upper right side pain. However in the morning I had depression so horrendous I had a mental breakdown and feeling extremely numb I couldn't get up from bed. Finally my last symptom and the worst, suicidal tendencies. I had warned my mom about the possible side effects so when I wasn't responding to messages due to the overwhelming depression she came to check on me. I had almost committed suicide due to the depression and thanks to my mom I'm still here. Overall, take this drug at your own risk. If it helps you, that's amazing. But for me, it almost cost me my life and made my endo pain much worse with a mountain of side effects. I never wanted this drug in the first place, but my OB said it was either this or nothing because she refuses to give me a hysterectomy. To all my endometriosis sufferers out there, good luck to you all in your journeies in battling this crippling condition.Read More Read Less

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Aries Dawnborn | 25-34 | Female | On medication for less than 1 month | Patient
7/19/2022
Condition: Endometriosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

I was prescribed this medication as a last resort ( after trying everything else for nonstop heavy bleeding and crippling pelvic pain that causes me to be bed ridden most days) to try to extend my time before biting the bullet to get a full hysterectomy at my age ( I am 34 years old). Day 1: the pain went from my normal 7-8 all the way to a 9 ( but I thought maybe it was a coincidence). Horrible brainfog and increased anxiety. Day 2: my pain went from a 9 to full on 10 and I couldn’t speak nor focus on anything for longer than 20 seconds at a time. I was instructed by my doctor to check in to the ER to make sure I wasn’t having an adverse reaction to the medication. They ended up saying they couldn’t prove nor disprove at the time so after hours of testing discharged me. Day 3: My pain stayed at a 9-10 and I ended up having the worst possible reaction to this medication. I went into full blown anaphylactic shock and had to be rushed back to the ER to get stabilized… they confirmed it was Orlissa causing my reaction as I had never had anaphylaxis EVER prior to this event ( and no changes to anything else in my routine nor diet). I really wanted to like and believe in this medication to slow down my symptoms and need for a full hysterectomy but unfortunately I cannot give any positive feedback on this drug. Be careful when thinking on using this drug. Read More Read Less

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Orange | 35-44 | Female | On medication for 1 to 6 months | Patient
7/16/2022
Condition: Endometriosis
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

I quit this med 2 months in due to side effects that I will list: Brain fog (all day & night) Forgetfulness (to the point I would forget what I was doing while I was in the process of doing it) Joint pain Abdominal pain Severe depression (considered suicide) Anxiety Severe mood swings Inability to focus Feeling like I was not present (like my body was in the room but my mind was elsewhere) Fragmented thinking Constantly feeling hot Pain in my pelvic bone I didn’t previously have This med is horrible and I don’t suggest you submit yourself to being experimented on by using it. For me, although my pain is excruciating to the point I can walk when I have a flare up, I’d rather deal with that than the side effects of this drug. I’m very disappointed as I’ve already had a hysterectomy and after trying other hormonal treatments this was pretty much the last resort. Read More Read Less

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Debbie | 35-44 | Female | On medication for 1 to 6 months | Patient
7/16/2022
Condition: Endometriosis
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

As much as I wanted this med to work for me, I couldn’t even stay on it the 3 months it takes to start working. I developed severe depression and anxiety I did not previously have. The endometriosis pain continued after my hysterectomy, due to the Dr not wanting to remove my ovaries. Ovulation is absolute torture, to the point I can’t walk. To be told that “there is nothing more we can give you, and we don’t prescribe pain meds for female pain”, this is very hard for me to wrap my mind around. Endometriosis is not uncommon and the fact that women are treated with medications like Orilissa, that can cause such severe depression that one considers taking their own life, is unacceptable. If you read the insert, which you have to, because your dr won’t tell you, a participant in the clinical trials actually did commit suicide. This drug is of the devil and I would not recommend anyone to take it. I’d rather be in pain than take this drug!Read More Read Less

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S | 35-44 | Female | On medication for 1 to 6 months | Patient
6/23/2022
Condition: Endometriosis
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

This medication worked wonders for me when it came to the pain I experienced during my periods. It took it completely away for 6 months. However, I did experience minor to severe side effects. Hot flashes were the minor side effects that I experience. This was a daily occurrence that happened multiple times a day. The major side effect that I received was joint pain that was severe after working 8 hours a day. I understand why this medication is only available for a 6 month period, I don’t know if I would’ve been able to walk after that. I will no longer take this medicine due to the joint pain. Read More Read Less

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Sunny | 19-24 | Nonbinary | Patient
5/10/2022
Condition: Endometriosis
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

The user experience of this drug seems to be quite dependent on person to person and how much you've been prescribed. Before trying Orilissa I was on a synthetic progesterone that, though keeping me alive (I was bleeding heavily everyday) was making my mental health plumet so badly I ended up in a psych ward twice while on it. I was prescribed Orilissa (150 mg once a day) after my hysterectomy and my life was no longer at immediate risk. It's been a night-and-day difference in terms of how much my life has improved since replacing my synthetic progesterone for this. The worst side-effect I get personally are hot flashes, which are an annoyance that's well worth it for the benefits. There's a possibility only 150 mg of Orilissa wouldn't have been enough to treat my severe (then life-threatening) endometriosis before surgical intervention, but with that combination of treatments I got my life back. I feel whether the drug is right for you is heavily dependent on your circumstances and body chemistry. Any gyno worth their stuff should be helping you work through which treatment (or combo of treatments) I'd right for you. There's no real magic bullet with endometriosis.Read More Read Less

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NoMoreEndo | 25-34 | Female | On medication for 2 to less than 5 years | Caregiver
4/5/2022
Condition: Endometriosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I’ve been on Orilissa 150 mg since mid-2019, and these past 2 ½ years have been the best years of my life! It’s incredible how my life has gotten back on track since being pain free and period free. That said, my insurance will no longer cover Orilissa because it’s not recommended for > 2 years. My bone density scan is normal, and I feel totally healthy. After one month of taking pills every-other-day, my period retuned and has been manageable. Not as bad as before, but why would anyone want to have a period!? Hopefully insurance let’s my doctor petition to keep me on Orilissa for longer.Read More Read Less

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Jennifer Taylor | 25-34 | Female | On medication for 1 to less than 2 years | Patient
3/28/2022
Condition: Endometriosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I have had endometriosis for 15 years, I’ve had 6 surgeries for Endometriosis. This is the only medication that has helped!

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Mekalei | 25-34 | Female | On medication for 2 to less than 5 years | Patient
2/6/2022
Condition: Endometriosis
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I began my Orilissa journey with 150mg daily almost 3 years ago. At the time, this medication was very new to the market and I didn’t have access to many reviews or opinions so I went in to this treatment blind. Within 2 months my periods stopped completely, and stayed away for the years to follow. Within the first 6 months, my endo pain was gone and I stopped having cysts grow. The only side affect I experienced was night sweats, which I was already used to as I took Visanne previously. We tried to conceive for years prior to this treatment. I am currently in my second trimester of my first pregnancy. I am so grateful for this medication giving me my quality of life back. Read More Read Less

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