Elagolix and Anxiety: What Users Say

• Lin...
• Taken for 1 to 6 months
• July 23, 2019

For Endometriosis "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."

• Kik...
• Taken for 1 to 2 years
• April 2, 2021

For Endometriosis "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."

• Hea...
• Taken for less than 1 month
• September 24, 2020

For Endometriosis "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’d rather deal with that than the pain I was dealing with on a day not being able to walk due 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 anything of it. I also had joint pain all over, and my hot flashes got worse. Day 3: Not able to talk right, my doctor's nurse instructed me to go to the ER due to me talking like the pig on Looney Tunes (IIII JJUST WWANTED HHHELP). That was a sample of how I sounded. 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."

• Tri...
• November 13, 2020

For Endometriosis "Stage 2 endo with PCOS. I had the surgery to remove the endo and started taking the 150 mg for pelvic pain. It did not help me at all. I felt all of the side effects. So my doctor increased my dosage to 200 mg. This pill has helped with pain with intercourse. However, vaginal dryness and numbness occurred quickly 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 without actually drinking alcohol. I've only been on Orilissa for 3 months and decided to stop it because the side effects were increasing. I decided that I would rather deal with the pain of my endo than the side effects. Even after stopping the pills, I still have severe migraines and sharp spine pain. Still have endo pain and now a list of other health conditions."

• Los...
• Taken for 1 to 6 months
• July 16, 2019

"After 3 years of miserable high estrogen, nausea, heavy periods, PMDD, breast pain, a complex ovarian cyst, hormone-induced constipation, and lots of pain... my doctor suggested Orilissa. I was on it for 3.5 months. I didn’t get total relief, my periods remained painful and heavy, but they were shorter. Instead of 2 weeks of anxiety, irritability, and crying - it was a daily, round-the-clock battle. I felt achy. My skin showed instant aging and dryness. I was still nauseous, fewer days though. I had worse insomnia, hot flashes, and night sweats. I put on a few pounds too. I didn’t see enough benefit to keep taking it, and my doctor agreed. I stopped at the end of May. It’s now the third week of July. Now I’m going bald! I didn’t notice the loss until about 3 weeks ago, and it is very noticeable. I can’t find this mentioned anywhere in the literature. My period is worse than ever. I’m scared what this has done to my bones if this happened to my hair :-("

• Pra...
• October 1, 2020

For Endometriosis "My doc prescribed 200 mg 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 of my positive surrounding energy and laughs."

• Z20...
• Taken for 1 to 6 months
• April 26, 2021

For Endometriosis "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."

• Jam...
• Taken for 1 to 6 months
• February 26, 2020

For Endometriosis "I started the 200 mg twice a day for my endometriosis pain. My doctor gave me a coupon, making it $5 a month. I read the side effects that say you will basically experience menopause, and boy, did I. Hot flashes, mental struggles, super dark thoughts at times, extreme anxiety, body aches, and pains. I was on this medication for 4 months and have been off it for 1 month, and I feel SO much better. Yes, the pain is back, and I experienced my first period since being off, and it was painful, but the mental struggle I suffered was not worth it."

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

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, 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."

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

For Endometriosis "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."

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

For Endometriosis "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."

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

For Endometriosis "This drug, Orilissa, helped me tremendously. Before it, I was basically non-functional, with pain and digestive issues. However, I also have a 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."

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

For Endometriosis "I started with the 150 mg 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, and depression. Going to make a psychiatrist appointment. Having no pain is still better... we'll see how the next 6 months go."

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

For Endometriosis "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 anyway. 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 of 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."

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

For Endometriosis "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 to 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."

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

For Endometriosis "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 (a 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."

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

For Endometriosis "I started this pill to stop pain my doctor believed was a result of endometriosis, but I also had several fibroids and an 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."

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

For Endometriosis "I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of 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 bone loss, 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 is breaking out, my migraines are back, and I feel like I am cramping."

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

For Endometriosis "I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of 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 bone loss, 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 is breaking out, my migraines are back, and I feel like I am cramping."

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

For Endometriosis "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."

• Toc...
• May 11, 2021

For Endometriosis "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 at 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."

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

For Endometriosis "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."

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

For Endometriosis "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."

• dap...
• Taken for 1 to 6 months
• August 25, 2022

For Endometriosis "I really enjoyed the benefits of Orilissa the first few weeks. I immediately stopped bleeding and felt great about it. A few weeks in, I started to have horrible hot flashes, many times a day, and they’ve only increased in frequency. I also have a mood disorder and anxiety, which have been greatly affected by Orilissa in the past couple of weeks (I’ve been on it 2 months). I cannot stand the way I feel, and I will be discontinuing the medication as soon as I speak with my OBGYN."