Elagolix User Reviews & Ratings (Page 3)

• Hello
• Taken for 6 months to 1 year
• September 23, 2019

Orilissa (elagolix) for Endometriosis "Orilissa is great -- it just takes a little time to get used to! When I first started taking it, my mood swings were pretty severe. But my doctor started me on Lexapro in combination with Orilissa, and everything has evened out. My pain has gone away, and I'm back to having pain free penetration! I'm a few months in, and my period is completely gone. It took me about 6-8 weeks to finally feel adjusted, but now I love it. Just keep hanging in there."

• Stage...
• Taken for 1 to 6 months
• May 4, 2022

Orilissa (elagolix) for Endometriosis "Stage 4 endometriosis, mobility issues due to back pain. I am on week 3 of Orilissa 150mg and I believe it is working for me. I have not experienced any negative side effects unlike others besides mild body temperature regulation and sleepiness during the day. This was a remedy to avoid surgery and this may be the answer for me. I did have to fight the insurance company for 6 months to get on it. After a uterus biopsy and the doctor's office's help, they were able to get the insurance to cover it."

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

Orilissa (elagolix) for Endometriosis "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 is now been 6 months and I have been told by my doctor the Orilissa is not working to slow down the growth of endometriosis, therefore and 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."

• Flarf
• Taken for 1 to 6 months
• March 30, 2023

Orilissa (elagolix) for Endometriosis "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 nights 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."

• hiano
• Taken for 1 to 2 years
• July 18, 2021

Orilissa (elagolix) for Endometriosis "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 affects. 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 was some wonder pill to take to stop the horrific pain of endo, but this pill is most definitely not it."

• Anonymous
• June 29, 2019

Orilissa (elagolix) for Endometriosis "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 was 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 1 pill two weeks ago and have been bleeding everyday 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 Orillissa 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."

• Update
• Taken for 2 to 5 years
• November 18, 2023

Orilissa (elagolix) for Endometriosis "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 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."

• Patie...
• September 27, 2019

Orilissa (elagolix) for Endometriosis "About 3 days into taking Orlissa, 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."

• Steph
• Taken for 1 to 6 months
• November 10, 2023

Orilissa (elagolix) for Endometriosis "I took Orilissa in 2019 for 6 months, 200mg, and I really liked it. It helped with my endometriosis pain and stopped the pain for 2 years. Unfortunately, it came back really bad now. I tried to get my insurance, UnitedHealthcare, to cover it, but they won't anymore. I don't know why. If you get diagnosed with endometriosis, keep that paper and never let it go because insurance companies will fight you about this medication. Also, avoid eating dairy! Good luck, ladies."

• Natasi
• Taken for 1 to 6 months
• September 20, 2019

Orilissa (elagolix) for Endometriosis "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, 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 next option to try and help the pain."

• Best...
• July 9, 2023

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "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."

• Jessica
• Taken for 1 to 6 months
• June 11, 2022

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "I had a laparoscopy in July of 2019 for Endometriosis. I was put on Junel Fe afterwards 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 occasionally 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."

• Jenn
• Taken for 1 to 6 months
• March 9, 2020

Orilissa (elagolix) for Endometriosis "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."

• JTolls
• March 30, 2020

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "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."

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

Orilissa (elagolix) for Endometriosis "I was recently diagnosed with endometriosis and my obgyn 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 where do 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 spawning. 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 anymore of these meds. I would rather push through the pain than deal with this nightmare ever again. Take this pill with great caution."

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

Orilissa (elagolix) for Endometriosis "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 in 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, and now I will see how things go as I have been off it for two weeks. I suggest if people wanna try it go ahead just have your family and your doctor monitor you for side effects, but I think it definitely has helped me."

• Alli
• Taken for less than 1 month
• February 11, 2021

Orilissa (elagolix) for Endometriosis "I tried. That's all I can say. Day 2 and my liver started to swell and cause massive pain. I had amber colored urine and was throwing up constantly. I stopped taking it and all the symptoms have stopped after a day. I'm so glad this works for some women but it caused possible liver damage for me. Just know you're risks when contemplating this drug. It has very high risk side effects."

• Seanna
• October 14, 2020

Orilissa (elagolix) for Endometriosis "This drug Orilissa is absolutely amazing. Within a couple days my pain has almost completely disappeared. Before Orilissa I had debilitating digestive issues and Orilissa made my life bearable again. Unfortunately, it put me in an awful mood almost constantly. I was lashing out at everyone around me. I decided I’d rather live in pain than drive everyone in my life away from me. I’ve tried at least 5 other birth control pills, but my body reacts horribly to progesterone and I’m considering giving Orilissa another shot. I truly believe that this is worth a try."

• Anonymous
• Taken for 1 to 2 years
• October 25, 2020

Orilissa (elagolix) for Endometriosis "This drug Orilissa helped me tremendously. Before it I was basically non-functional with pain and digestive issues. However, I also have an pre existing anxiety disorder and anxiety is a side effect of this medication. I would not recommend it to people with severe anxiety as it can occasionally cause additional anxiety in me. Additionally, bone density loss is another side effect to be wary of. If you aren't relatively healthy or under age 40 or so, I would not take this medication due to this factor."

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

Orilissa (elagolix) for Endometriosis "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 Orlissa 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."