Orilissa for Endometriosis User Reviews (Page 3)

• Nat...
• Taken for 1 to 6 months
• September 20, 2019

"The medication worked for pain control, but unfortunately, I only lasted taking the medication for 6 weeks. I got the hot flashes, which were not too bad, my issue was the severe change in my mental health. I was having increased anxiety, depression, and terrible dark thoughts. It got to a point where I did not trust myself to be alone. I also gained some weight and constantly felt bloated. No menstrual cycle for those 6 weeks, which was wonderful. I also did have trouble with finding words and concentrating, and also joint and back pain. It's a shame it caused me to mentally feel like I wanted nothing more than to die because it did help with pain greatly. I've read my side effects are not as common, but it's a scary feeling to not feel safe alone. I'm looking for the next option to try and help the pain."

• AMa...
• Taken for 6 months to 1 year
• October 7, 2019

"I had laparoscopic endometriosis surgery in March 2019 and was prescribed Orilissa. The first few weeks after taking it, I did experience frequent headaches, mood changes, and night sweats. I figured it would work itself out. It has now been 6 months, and I have been told by my doctor that Orilissa is not working to slow down the growth of endometriosis, therefore, I am scheduled for a partial hysterectomy in November. The past few weeks have been very rough, battling side effects of this medicine such as daily headaches, joint pain, back pain, hip pain, pain in my abdomen, anxiety with heart palpitations, weight gain, restlessness, sleeplessness, night sweats, very sad and disturbing dreams, irritability, and no change in sex comfort. Sex drive has been nonexistent since March. While the benefits of this drug to slow down the progression of endometriosis may have once been beneficial to me, the side effects outweigh those benefits."

• Jes...
• Taken for 1 to 6 months
• June 11, 2022

"I've been on Orilissa for 8 weeks now after years of ever worsening pelvic pain from endometriosis and adenomyosis. It took several weeks, but I feel amazing now, I am pain-free. As far as side effects, I've only had a few headaches and hot flashes. I was wary to try this because so many people have such a negative reaction to it, but it has really worked for me."

• Anonymous
• Taken for 1 to 6 months
• June 5, 2023

"I have been on Orilissa for over 3 months now! I was super nervous at first after reading reviews about Orilissa, but nothing else was working and my symptoms just kept getting worse. Well, I am so happy that I tried this medication. Nothing else seemed to work for me. I tried anti-inflammatory diets, various birth controls, IUDs, and surgery. Highly recommend! It is important to take this every day at the same time. If I had to name side effects that I have noticed: a few (less than three) mild hot flashes and some belly bloating. But nothing compared to previous treatments. I hope this helps!"

• Anonymous
• June 29, 2019

"I have been taking Orilissa since the beginning of January following a second laparoscopy over Christmas. The beginning was super difficult. The headaches, nausea, and dizziness were horrible. Light bleeding in the beginning. I kept a diary of my symptoms, and my headaches lasted about three weeks. Next came the joint stiffness. I decided to try collagen supplements, and I have had mild to no joint pain since February. I accidentally missed one pill two weeks ago and have been bleeding every day for a week now. I don’t know if it was from that in conjunction with the amount of stress I’m under right now, but the pain I have with my period is right where it was before my surgery. I haven’t experienced severe hot flashes like I did with the Lupron injections, and my mood swings aren’t as bad on the Orilissa compared to the Lupron. I’m going to give it another month and see if I get another period. Overall, I’m pleased with this medicine. No pain for five months has been heaven."

• hia...
• Taken for 1 to 2 years
• July 18, 2021

"Please do not take this. Taking away your period will seem amazing, and the reduced pain will be wonderful. However, you’ll experience awful menopause symptoms and be stuck with long-term effects. I came off the pill after it caused me to develop interstitial cystitis, and my pain is worse than ever before. I really wish there were some wonder pill to take to stop the horrific pain of endo, but this pill is most definitely not it."

• Upd...
• Taken for 2 to 5 years
• November 18, 2023

"I've been on Orilissa for 4.5 years now, which is probably the longest anyone has taken it. Pros: my endometriosis pain is gone -- no periods, no pain, no bone loss. It's allowed me to pursue dreams that I didn't think were possible because I used to be bedridden. Cons: I'm stuck on this medication for life. I've tried going off several times, and my depression destroys me, and the endo pain comes back after about 3-4 months. The mood swings aren't as bad coming off as they are going back on. If I miss pills for more than 5 days, I start to notice horrible mood swings, cramps, and joint pain. I don't know. This medication has been a blessing and a curse. As long as I take it daily, everything seems to be okay. But it scares me that I'm hooked on a pharmaceutical drug, and we don't know the long-term effects of taking this for the rest of my life."

• End...
• Taken for 1 to 6 months
• January 20, 2020

"I started Orilissa (200 mg) 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 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."

• Rin...
• Taken for 1 to 6 months
• January 30, 2020

"This is my 4th week of taking Orilissa, 150 mg once a day. I was on Femara, but it wasn't helping my pain levels at all, I 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 balance 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."

• She...
• Taken for 1 to 2 years
• January 17, 2022

"I’ve been on this drug for about a year and a half. When I first started taking it, the side effects were horrible. Skull-crushing headaches, night sweats, hot flashes, mood swings, increased depression/anxiety, grogginess/brain fog, and overall just feeling like a pile of hot garbage. And after being on this drug at 150mg, I’m here to report that all of those side effects are still strong and very present. One might think, “Well, if it takes your endo pain away, then it’s worth it, right?” No. The pain is still there, I still have terrible flare-ups, I have random breakthrough bleeding, it’s just been a horrible time. Having endo + having terrible side effects just makes you feel more depressed and hopeless. Recently, I began to have strong symptoms that were just like PMS symptoms. After an MRI, my doc determined that my body is producing enough hormones to overpower the Orilissa. Now, I’m stuck taking 200mg twice a day for the next 6 months. DO. NOT. TAKE. THIS. DRUG."

• Fla...
• Taken for 1 to 6 months
• March 30, 2023

"Most everyone has the same experience with this drug, and I was no exception. Took it for endometriosis pain, and it technically works, pain is gone. But this is not one of those drugs where you may or may not get the side effects, you WILL experience at least some of them sooner or later, and they are awful. I would only recommend this drug if your endo pain is so debilitating that this is your only option. My body didn't feel like mine emotionally or physically, I was hot and miserable all the time and couldn't get a full night's sleep. I had panic attacks, my boobs deflated like popped balloons, and I even smelled different (bad different), and the vaginal dryness-dear lord, the dryness. I would rather have the endo pain, and I will, 'cause I stopped taking this drug cold turkey rather than be on it for one more day."

• Anonymous
• July 17, 2021

"I started taking Orilissa four days ago. I have been experiencing bleeding due to this medication, I think it's not agreeing with my body, or maybe I'm just overthinking it. I went through everyone’s reviews and decided that I'm going to stop taking Orilissa altogether. I think my doctor and I have to sit down and discuss an alternative. Due to this pill, I have been passing small blood clots. I don't recommend this pill for anyone."

• Bun...
• Taken for 6 months to 1 year
• November 13, 2020

"I had a laparoscopy in July of 2019 for endometriosis. I was put on Junel Fe afterward for symptom management. It didn't work out and I was put on Orilissa in February of 2020. I have had minimal pain and have been able to get a job for the first time ever. Before this, I missed school every month because I couldn't stand up on the first and second days of my period and had to run to the bathroom every 15 minutes. I no longer have a period, just some occasional spotting. I do get occasional cramping, but nothing near what I got before. The main side effect I have is joint pain, but it is worth it, as I am now functional. I know it can cause osteoporosis, but I don't care because this is the first time since I was 12 that I have been able to keep a routine. I will deal with long-term side effects when they show themselves."

• Jen...
• 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."

• Pat...
• September 27, 2019

"About 3 days into taking Orilissa, I noticed my pain start to lessen significantly. It was nice for about 3 weeks, until I started getting the side effects, which are the reason I decided to stop taking it. First came the joint pain. As the days went on, the pain intensified, spreading from my wrists to my elbows and shoulders, then to my hips, knees, and ankles. It became such intense pain that I was having to take over-the-counter painkillers for breakfast, lunch, and dinner. Then came the hot flashes. They started out being short-lived and rather uncommon. Then they started to get longer and more frequent; I still have both side effects, this is my second day off the drug. I feel that although my abdominal pain is excruciating and often unbearable, experiencing pain in all other parts of my body accompanied by frequent bursts of unforgiving sweating and irritability is not a fair trade. I am hoping that these side effects wear off."

• Bes...
• July 9, 2023

"I was on Orilissa for 18 months on my first round and it was great!! I had been sleeping on the heating pad for about 3 weeks a month for all my pain and cramps. After the 2nd month, I was down to just the week of my period on the heating pad. I also went from 3 super heavy flow days down to 1 1/2-2. Just finished the 6-month required break and am ready to get back on Orilissa so I can start feeling better again. The only side effect I had was an irregular period."

• utg...
• 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."

• Kam...
• Taken for 6 months to 1 year
• June 27, 2023

"After almost a decade and a half of severe pain and so many different attempts to treat it, I had become resigned to the fact that I would just be in horrific pain for the next few decades. Then I moved for work and found a new OB/GYN, and she suggested Orilissa 150 mg. It absolutely worked. About 90% ended my period and the pain almost entirely went away! Sometimes I'd still get echoes of cramps, but they were a mere fraction of what I had been dealing with before. Honestly, I didn't really notice many side effects. I was concerned about possible bone density loss, but I spend a bit of time at the gym and I didn't notice any difference. All in all, I was on Orilissa for almost a year before I finally got my hysterectomy, and it was amazing."

• Anonymous
• Taken for 1 to 6 months
• June 20, 2023

"I have Stage 4 endo. It grows on my appendix and liver. I have had severe occurrences of A-FIB as well. At 28 years old, with no other medical conditions, I suspect I have a small bit on my heart. It took me 10 years to get diagnosed. After the ex-lap, I started Orilissa for 3 months. Yes, I got headaches, hot flashes, and night sweats, and my boobs shriveled up like raisins. I had peach fuzz on my face. However, I was pain-free for the first time in 3 years. But I ran out while my pharmacy took too long to dispense the medication (the VA). So, having been off it for 3 weeks, my period hasn't come back. I had a week and a half of low energy, and over the last 48 hours, I have felt like there is glass inside of me. I am in so much pain, more than I think I have ever had. My bloat is so intense. I was actually reading these reviews for an explanation because I'm in agony right now. Ibuprofen 600 mg with alternating Tylenol is not touching the pain."

• Anonymous
• February 6, 2021

"I’ve been on Orilissa 150 mg daily since 06/2020. I’ve had surgery in 2015, and this has been the only treatment that has helped. It took about 2 months for the symptoms to diminish, but since I’ve had maybe 2 minor flares. No periods and maybe a handful of bearable hot flashes. I had one episode of being emotional, but overall this medication has been a lifesaver. I’m 32 and had intense endo pain for the past 12 years to the point of getting a hysterectomy. Like many, I was hesitant to start because of the severe side effects, but everyone tolerates medication differently. Please do your research, talk to your doctor and family to make sure you are all on the same page."

• Jus...
• Taken for 1 to 2 years
• October 16, 2021

"I just finished 2 years on Orilissa. I did not experience any of the pressure from the doctor that anyone else reports, as I was looking for a non-surgical option after the first surgery did not remove enough, and I still had pain. I went with the lower dose, and I’ve been fortunate to have minimal side effects, and my doctor monitored my mental health while on it. I also had endometriosis all over my bladder that was causing problems, and Orilissa resolved that as well. Well, there was weight gain and menopause-like symptoms in the beginning. The fact that I am not writhing on my bathroom floor in pain makes it worth it. The cost is pretty horrible, I must say, and I don’t love the packaging as it is difficult to get out. Now, I will see how things go as I have been off it for two weeks. I suggest if people want to try it, go ahead, just have your family and your doctor monitor you for side effects, but I think it definitely has helped me."

• Anonymous
• Taken for 6 months to 1 year
• January 25, 2021

"I have had such good results with this medication, Orilissa. Before this, my periods were so painful and heavy, and I had really bad PMS before, and pain during sex. But on the medicine, I had some spotting once a month and mild cramping. PMS improved. I was on it for over a year. I just stopped it last month due to an insurance issue and am now miserable. Symptoms are all coming back, and I’m having terrible mood swings. I see the dr in a few days and am hoping to get back on it."

• JTo...
• 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 doctor put me on the medication 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, and 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."

• Anonymous
• Taken for less than 1 month
• August 11, 2022

"I was recently diagnosed with endometriosis, and my OB-GYN thought I should try this medication. Dear God. I took the first pill last night. I woke up convulsing, couldn't move, screaming. My body felt like it was on fire. I felt like I was being crushed, my limbs were too heavy. I couldn't keep my breathing steady. My husband had to carry me out of the house and rush me to the ER. I have never been so scared in my life, I thought I was going to die. The worst anxiety I have ever felt. My entire body was just spasming. I really had to fight to use my hands and to stop rocking back and forth. I could barely speak. My blood pressure was up, and my heart rate was through the roof. Never in my life have I experienced something so awful. I will not be taking any more of these meds. I would rather push through the pain than deal with this nightmare ever again. Take this pill with great caution."

• Tar...
• Taken for 1 to 2 years
• March 31, 2023

"I took the 150 mg Orilissa for the full 2 years. The only side effects that I had were hot flashes and night sweats, which do not go away while you are on the meds. Up until the last 3 months that I was on Orilissa, I did not have any issues with pain, cysts, bleeding, etc. The last 3 months, I had two periods. One was like a normal period with extreme cramping, and the last was a cyst rupture with heavy bleeding for 4 days. If you are like myself, that struggles with cysts, pelvic pain, and bloating, I would highly suggest this medication. You do need to give it some time, and you do need to take it at the same time every day. I simply set an alarm on my phone for a time I knew I would be awake."