Elagolix and Depression: 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."

• 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."

• Ami...
• Taken for 1 to 6 months
• November 3, 2019

For Endometriosis "I just need to share the experience I had with Orilissa. While Orilissa was a miracle for my endometriosis pain, which is severe, it caused me to suffer from crippling depression and suicidal thoughts. I’ve now been off of it for 3 weeks. I’m currently dealing with my endometriosis pain because while it is horrific, I’m no longer a shell of myself trying to determine the best way to off myself. Please, please look out for your mental health while on this medication. Until I realized Orilissa was the cause of the issue, I was almost to the point of admitting myself over the suicidal ideation."

• Cat...
• Taken for less than 1 month
• June 7, 2020

For Endometriosis "Have been prescribed Orilissa by gynecologist for pelvic unknown pain. Been on it for 2 weeks now, and I feel terrible. Feel like I have a fever even though I don't. Had several episodes of painful headaches, terrible nightmares, can't sleep 8 hours in a row, nauseous, can't eat at all for many days in a row now. Feel depressed, like crying all the time for no reason, very on edge, and I just lash out at my partner constantly for just being in the house and breathing. This medication is really hard to take as side effects are huge. Side effects of this medicine are as bad as Paxil when I started it 15 years ago. The first month was awful, but my anxiety got better after the first month, contrarily to Orilissa, which has had no effect on my pelvic pain so far. Be really careful with depression and suicidal thoughts. This medicine is definitely not for everybody and should carry the 'black box' suicide warning box. It does have the warning but not the full black box warning."

• Ash...
• October 11, 2019

For Endometriosis "When I started Orilissa for endo, I was a little hesitant. I started to get severe bone pain, my doc put me on Fosamax, it helped. The first week my endo pain disappeared, then it started to show its ugly face. I started feeling depressed and very irritable from the med. I started having really dark, morbid thoughts. The way I was feeling physically and mentally was hard. One minute I would be fine, the next I would feel so far down it was unbearable. I stopped the med after six months due to having most of the common, uncommon, and rare side effects and the mental state that it put me in. It has been four days since I stopped, I’m feeling very irritable, emotional, and my joints are sore. This med didn’t work for me, I still had endo pain with the side effects. If I knew then what I know now, I wouldn't have started this med. There isn’t enough info about it out there. Please do your research on this med before you possibly make the same mistake. If you are currently on it and are having issues, please tell someone! This med is not worth it. Good luck!"

• Lea...
• Taken for 1 to 6 months
• December 13, 2019

For Endometriosis "DO NOT TAKE ORILISSA! I had laparoscopic surgery in December 2018 at the age of 20. In January, I started Orilissa 200 mg twice a day for a month. I had severe headaches, hot flashes, bloating, fatigue, and depression. I lost a good amount of muscle, and my bones and joints throbbed all the time. I lowered the dose to 150 mg once a day, and I had absolutely no change at all. Not to mention, I had no sex drive, was completely dry down there, and my skin and hair became dry as well. I am in nursing school, and I could not focus on studying. My headaches were so bad they affected my eyes and even put pressure in my ears. I developed insomnia and lost all interest in everything. I highly recommend that people stay FAR AWAY from this medication. It took me almost 5 months to return to normal and 8 months to regain my strength and muscle mass in the gym."

• 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."

• LJa...
• Taken for 1 to 6 months
• June 25, 2019

For Endometriosis "This week is my 12th week on Orilissa. I have endometriosis and PCOS and am also using Mirena, so I do not have a period but still have the symptoms. I have not had good results with this medicine. I had severe headaches when I started taking it. They eventually went away, but I have had hot flashes the entire time. My joints ache, it has gotten worse as time progresses. My hands are swollen a lot from the ache. The mood changes, depression, and negative thoughts are present and difficult to deal with. The medicine has not helped me and only made the symptoms I already deal with from endo and PCOS worse. I stuck it out until the 12th week because my doctor said that is when most women feel the benefit, and the cost is so much cheaper than the BC I had been taking, so I really wanted this to work. I will not be continuing to take this medicine."

• 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."

• End...
• September 30, 2019

For Endometriosis "Orilissa has been a huge success for me! I’ve been on it for about three months now. It eliminated most of my endometriosis symptoms, like bloating and pain. Occasionally, I do get pelvic and lower back pain, but ibuprofen is now enough to address that. I did deal with severe mood swings and depression when I first started. Make sure to talk to your doctor in this case! I felt very scared, but getting the support and purposefully scheduling check-ups really helped me out. Things have gotten way better, and many of the side effects are disappearing. MAKE SURE YOU STAY IN CONTACT WITH YOUR DOCTOR AND SCHEDULE CHECK-UPS! I recommend this if things are fine or not, just to make sure your mental and physical health are doing well."

• 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."

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

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 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."

• Jen...
• Taken for 1 to 6 months
• March 9, 2020

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."

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

For Endometriosis "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."

• 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."

• 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."

• 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."

• 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."

• Hal...
• Taken for less than 1 month
• October 11, 2021

For Endometriosis "Has anyone else tried cutting the dosage much smaller? I was on the 150 dosage for less than one week and had side effects that were worse than the condition being treated. I experienced night sweats, but the mood issues were the red flag for me. Have not had panic attacks and depression like that in over 20 years. I tried stopping and re-starting with the same result. But at the same time, I experienced pain relief that I definitely need. So I am now taking less than half a dose. I am not sure if this is recommended, but I need the pain relief. I was surprised that it is not even period-related for me. I have been having bad back pain that is likely a disc injury, and it has totally disappeared on this medication. I also have less abdominal pressure and pain than normally, which was a major symptom for me. This is after taking a half pill every other day that I am seeing these positive changes. I am going to keep this small dosage and see if the mood issues are not too bad."

• Gis...
• Taken for 1 to 6 months
• June 23, 2022

For Endometriosis "I was prescribed Orilissa 200 mg as an alternative to a hysterectomy due to uterine fibroids. My periods became much lighter and less painful right away, but the headaches are almost every day, and then back pain and blurry vision started. I also started experiencing weird facial twitching, which I have never had before or after Orilissa. I've always been the all-natural, non-hormonal girl, so I don't know if this is why my body is so sensitive to this medication, but I've decided to tough out the painful, heavy periods and anemia a little longer and hope for another option to surgery. Also, I forgot to mention the feelings of depression and mood swings that just are overwhelming."

• Anonymous
• Taken for 1 to 6 months
• February 20, 2022

For Endometriosis "I was on Orilissa for a month. I have been off for two weeks, and it has completely screwed up my cycle. While on Orilissa, my period was more painful and lasted two weeks: one week of extremely heavy bleeding and one week of spotting. I was very moody and depressed while on the medication as well. Due to the side effects and just not feeling quite right, I stopped the Orilissa. However, I have only been off about two weeks, and my cycle is still 'off.' My period returned a week after stopping Orilissa, and I now have spotting after sex and cramping. I don't like this medication and wish I never took it. My cycles have never included spotting or been irregular prior to Orilissa."