Elagolix for Endometriosis User Reviews (Page 4)

• Can...
• Taken for less than 1 month
• March 25, 2020

Orilissa (elagolix) "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."

• Anonymous
• February 6, 2021

Orilissa (elagolix) "I’ve been on Orilissa 150mg 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 on starting because of the severe side effect 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."

• rra...
• Taken for 1 to 6 months
• February 13, 2021

Orilissa (elagolix) "I have been on Orilissa since October 2020. The first two months were awful, as I had been warned. A horribly painful period and a massive migraine level headache that lasted for 2 weeks are the highlights. The headache gradually lessened and then disappeared. It was rough, however, after I emerged from that time period, I am completely pelvic pain free for the first time since 1990! I have had two surgeries, been on low dose birth control pills continuously except for two, 6 month long Lupron sessions, and never, ever have I been pain free, until now. I am so glad that I listened to my Dr. and other reviewers and held steady for those couple of months. It was more than worth it!!!!!"

• ron...
• Taken for 6 months to 1 year
• May 23, 2021

Orilissa (elagolix) "I started with the 150mg dose in November 2020. (Stage 2 endo). At first it made me very nauseous for about a month. Then it started working and I was more than elated. I lost my period altogether after a horrible cycle in March. Now, 6 months into it I am starting to feel the effects of menopause. Sore joints, weight gain, sleeplessness, night sweats, lack of interest in sex, anxiety & depression. Going to make a psychiatrist appointment. Having no pain is still better...we'll see how the next 6 months go."

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

Orilissa (elagolix) "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."

• adh...
• Taken for less than 1 month
• April 8, 2023

Orilissa (elagolix) "When I first started taking this medication, I was so excited because I work in a pharmacy and had recently heard of it when we had to order some for someone. I had been taking generic Yaz birth control for a while, and my gynecologist switched me to Slynd because of my endometriosis, and it has been good so far since I did not like norethindrone in the past. I have had painful, recurring ovarian cysts for years. Then my doctor added Orilissa, and I was like, 'Yay, finally some relief.' Keep in mind; I have bipolar disorder and CPTSD, and I am on the autism spectrum. I was horrified when I looked it up and saw the effects it had on other women, especially those who already had conditions like bipolar disorder. I took it for four days, and while it helped my cramps, I was a raging monster to my husband. I hated that. My gynecologist thought I would be okay since I am on a good mood stabilizer, but sadly, no. My pharmacist said she thinks it was this medication. I am so disappointed; I wanted this to work for me!"

• Anonymous
• Taken for less than 1 month
• January 9, 2022

Orilissa (elagolix) "Be careful taking this medication, especially with other medications. I never usually take time to write reviews, but I had to for this one. I took this medication one time. I was excited it could potentially help the pain I'm in. About lunch that day, I felt strange. Then, my heart started racing in my chest and I began to get chest pain. My vision was going in and out in my right eye and blurred overall. I had the worst migraine in my life. I felt like I was constantly about to pass out, and even somewhat felt detached from reality. I ended up in the ER. I legitimately thought I was dying in my 20s from this. I could not find any known reactions with my medications I already take and this one, but it's the only explanation. All tests were normal. It's been days and I'm just now feeling like myself again. Please be careful if you take this."

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

Orilissa (elagolix) "I took the 150MG 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."

• Jbb...
• Taken for less than 1 month
• January 25, 2022

Orilissa (elagolix) "I was terrified to take this medication, as anytime anxiety or depression are a possible side effect, I wind up having panic attacks. I decided to go against my gut and try this anyways. The first 3 days were fine. Then the anxiety started. The 5th day I was suicidal. Never in my life have I ever had that thought. Ever. I stopped taking this medication on day 7. I am STILL dealing with daily horrible anxiety and suicidal thoughts a couple times a month and I stopped taking this medication 3 months ago. DO NOT TAKE THIS. Mental health is just not worth it. If I could rate this a negative 100, I would."

• Anonymous
• Taken for 1 to 6 months
• November 5, 2021

Orilissa (elagolix) "After reading reviews, I was hesitant to start Orilissa. However, my Ob/Gyn had a lot patient success with it. I started taking 200mg 2x daily one month after having lapriscopic surgery to remove some of my endometriosis (stage 4). I took it a total of 4 months. Pros: I had absolutely no endo pain or the usual bloated feeling. I also did not have a period or any period symptoms. I did not experience any headaches, depression, or suicidal thoughts. Cons: Major hot flashes and sweats ALL day, EVERY day (continued several weeks after stopping). My body ached and muscles always felt tight. I had no sex-drive. Due to being over the hot flashes, I could not wait to be done taking this medication. I did not sleep one full night during the entire time of taking it. I find managing endo pain and heavy periods is easier than dealing with intense hot flashes. This medication affects everyone different and you never know what your gonna get unless you try it."

• Cat...
• Taken for 1 to 2 years
• April 4, 2020

Orilissa (elagolix) "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."

• Sam...
• Taken for 6 months to 1 year
• August 3, 2021

Orilissa (elagolix) "Endometriosis lesions can produce their own hormones, and this medication does not reduce or eliminate that. I took a chance on this because I was trying to delay another excision surgery. However, not only did this drug not help me, within several months of taking it my pain worsened to the point that I could no longer wait to have surgery."

• Toc...
• May 11, 2021

Orilissa (elagolix) "When I began this medication I got really bad cystic acne. I had never had acne like this before so I had to see a dermatologist to prescribe medication. I was on Orilissa on the lowest dose for 7 months and had night sweats that made it hard to sleep and hot flashes throughout the day. I noticed less pain and my periods completely stopped and resumed one month after stopping it. I also suffer from anxiety and depression and it became a little worse. I gained about 10 pounds and I had blood work done right after I finished it and I have a vitamin D deficiency. I don't know if it could be from this medication."

• Anonymous
• Taken for 1 to 2 years
• July 20, 2021

Orilissa (elagolix) "Started this medication in July of 2020 for chronic endometriosis. After 3 weeks I was placed on Lexapro as it caused horrific anxiety and emotional outbursts. My periods halted and yes pain subsided. However the anxiety continued, started showing early signs of menopause (hot flashes, night sweats, fatigue, mood swings) . I stopped this medication 3 weeks ago after starting to have symptoms of body aches/joint pain. Also if anyone touched me or tried to tickle me I would hurt so bad it would make me want to cry. Just this week I have been diagnosed with fibromyalgia and bone density loss. I am 36 years old. This should not be happening. I will be having a full hysterectomy soon as I should have done a year ago."

• Sam...
• Taken for less than 1 month
• July 20, 2022

Orilissa (elagolix) "So my OB recommended Orilissa and gave me the 150 mg dose. Before my endo surgery I denied Orilissa because of my concerns with the side effects. Of course when I failed my 6 month post op and was denied a hysterectomy again I was basically told take the Orilissa because we won't do anything else, so I did. Holy dang it was horrible. I could only take one singular dose before my mom stopped having me take it because of the side effects. I took it at night my symptoms at night were as follows: insomnia, heart racing, panic attacks, horrible pain in my upper right side, and increased anxiety. I was finally able to sleep and I was hit with more side effects: horrible depression, mental breakdowns, endo pain so horrible I sobbed, and I almost attempted overdosing on painkillers because my mental health was that bad. My mom had to watch me the rest of the day to make sure I didn't have any way to harm myself. Luckily I was given a sample so I didn't pay the 1200 for it."

• The...
• Taken for less than 1 month
• January 5, 2022

Orilissa (elagolix) "I started this pill to stop pain my doctor believed was a result of endometriosis but I also had several fibroids and ovarian cyst. I was not able to make it a full month on this pill. This medication caused me extreme anxiety. I would not recommend this medication."

• Tat...
• Taken for less than 1 month
• January 31, 2022

Orilissa (elagolix) "I started Orilissa Jan 1, 2022 and have almost completed a whole month. My OBGYN insisted that it wouldn’t work for pain until about 60 days —average. Week 1 of taking the medication I was not in pain. Week 2 was menstrual week and the regular pain that I had been having reduced to occasional cramps. I did however stop having heat flashes when I started taking this medication. My symptoms from endo such as cystic acne, hot flashes and more have gone away almost entirely BUT I have experienced vaginal dryness which is a little uncomfortable during sex."

• Jme...
• Taken for less than 1 month
• March 16, 2022

Orilissa (elagolix) "Orilissa is absolutely the worst. The reviews are true. I was only on it for 3-4 days and I had hot flashes and didn’t feel like myself. I switched back to birth control and now am experiencing cramps (due to the lapse in bc) and still do not feel like myself mentally. I feel down for no reason. I have been on birth control for close to 20 years and it has some super mild side effects. I would take these any day if the week over Orilissa. I really feel like a lawsuit will be coming any day honestly. It’s super strange that they had a nurse call me repeatedly. I feel that they know the mental health side effects and don’t care."

• Anonymous
• Taken for 1 to 6 months
• April 2, 2022

Orilissa (elagolix) "I have used/attempted Orilissa at the 150 mg two different times. First round discontinued using after 1-2 months and second time after 3 months. The drug resolved 95% of my pain secondary to my endo but the side effects were almost more destructive than dealing with pain. Side effects included: hot flashes, headaches, inability to sleep, fatigue, lack of motivation, extreme mood changes, anger, anxiety, weight gain, noticeable change in vision, occasional joint pain, and after consuming alcohol (glass or two of wine) would not feel well. If you can tolerate the side effects and need short term relief, sure give it a go. But after my second round, I have decided my quality of life has drastically declined AGAIN and is not worth it."

• Tra...
• Taken for less than 1 month
• November 20, 2021

Orilissa (elagolix) "I started taking Orilissa to help with heavy bleeding due to a fibroid. Within a few days I noticed that I was a lot more anxious. I had thoughts going round and round obsessively in my head, which I knew was unusual. Shortly after I started to wake up in the night and became extremely fatigued and overwhelmed. I wanted to continue to take it for at least two weeks but mentally became in such a bad place that I stopped after 12 days! Every day thereafter I started to feel better and better mentally."

• Mix...
• Taken for 1 to 2 years
• September 29, 2021

Orilissa (elagolix) "I started taking this medication about 18 months ago. Started with 150mg a day but quickly went up to 200mg. At first I had constant headaches, bloating, cramping, feeling off fullness, unable to sleep, extreme depression and anxiety, hot flashes, mood swings but after about 10 or 12 months all except the occasional hot flash and severe anxiety disappeared (I have been prone to severe anxiety and panic attacks my entire life but this is on another level) BUT I AM VIRTUALLY PAIN FREE (from Endo at least....narcotic pain meds never really touched my Endo pain) bone loss can be a huge issue but as I am literally only taking this until I can have a hysterectomy which can also cause boneless my doctor agreed to keep me on it a bit longer. I did run out 2 days ago and am angry with everyone, starving, gained like 6 lbs, my face it breaking out, my migraines are back and I feel like I am cramping."

• MKM...
• Taken for 6 months to 1 year
• November 18, 2021

Orilissa (elagolix) "Thought this drug was too good to be true. First 6-7 months of being on it my pain did subside, but I was 23 when I went on it and I was going through a “temporary menopause” meaning I stopped getting my period, had EXTREME hot flashes, insomnia, and I became really weak. Didn’t get a period for 2 years even after I stopped taking it. Those were just a few side effects of this awful medication. Felt pretty weird at 23 to not even feel like a woman. Word to the wise, explore other options before going on Orilissa."

• Lim...
• Taken for 6 months to 1 year
• October 12, 2021

Orilissa (elagolix) "I started Orlissa 7 months ago after having several lesions taken off of the outside of my uterus, colon, and near my bladder several months before. Before that, I had been on hormonal birth control for a long time and had a horrible experience (horrid periods and very severe depression and anxiety) I sometimes wonder if the relief I have from this medication is actually from being off the hormonal birth control, or if this is the medication actually working. I haven't had a period since starting and it's been amazing, both physically and mentally. I still have endometriosis pain on the side that was bothering me before, but I don't have hours of cramping like I did beforehand. The first couple months I would get night sweats and hot flashes, but haven't had any sense. The only real symptom I get is within 10 minutes of taking the pill I get extremely nauseous and it sometimes lasts until the next day."

• sta...
• Taken for 1 to 6 months
• May 8, 2023

Orilissa (elagolix) "After my ex lap, I was on 150 mg Orilissa once a day for three months. It didn’t stop my cycle, and I couldn’t tell any improvement with the pain. However, I developed new joint pains I hadn’t experienced prior to taking the medication and had horrible headaches. I was exhausted all the time. When I would wash my hair, I would lose a lot more hair than my normal shedding. The only positive thing was that by the third month, I had a significant improvement in my mood. I have PMDD and anxiety. I felt calmer and more even in my mood than I ever have. When I went back to my doctor for a follow-up appointment, she increased my dosage to 200 mg twice a day. It made all of my new joint pain worse. After a few weeks, I felt absolutely hopeless. I’ve never been that depressed and could not stop crying. My mom was worried about me and told me to stop taking it. I did and eventually felt like myself again. Taking this medication is one of the biggest regrets of my life. Don’t do it."

• Eyn...
• Taken for 1 to 6 months
• October 27, 2020

Orilissa (elagolix) "I've only been taking Orilissa for a little over a month. I haven't noticed any side effects other than mild hot flashes and weight gain, but I also haven't noticed any difference to my pain. The only difference is that my nausea is a bit better than before. I still get it consistently, but not as bad. My doctor prescribed this to help with inflammation before my surgery. Was supposed to get Lupron, but it's constantly on backorder. Also, my insurance said they wouldn't cover it, but somehow my pharmacist got authorization, so make sure to check if your pharmacy has tried to get authorization."