Orilissa and Mood Swings: 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."

• Col...
• Taken for 6 months to 1 year
• November 27, 2020

For Endometriosis "I've had 8 surgeries for endometriosis from 7th grade to 42, but because of all my surgeries... they've been leery to do a hysterectomy. Tried 150 mg Orilissa and it did nothing, in fact, I feel like I just had extra side effects: migraines, hot flashes, mood swings, etc. It didn't stop or help bleeding or pain. They upped me to 200 mg 2x/day and bleeding has mostly stopped. I still have pain and cramping, and side effects have increased. Now headed to have a complete hysterectomy with 2 surgeons at the same time because they expect a very adhered abdomen and complications. Menopause will suck, but at least I have an end point in sight now. I've also been on Depo and Lupron multiple times and feel like those worked better. I can't sleep well ever, constant migraines, hot flashes, and sweating like crazy... at least it's going into winter because summers are blazing hot here. Orilissa was a big fail for me, but I'm happy it helps some of y'all."

• 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."

• Ban...
• Taken for 1 to 6 months
• May 29, 2020

For Endometriosis "I want to share my positive experience with this medication for those who are worried about taking it when reading all the unwanted symptoms some are having. I have stage 4 endometriosis, and my pain was really bad. I also have pelvic cramps, cramps in my vagina, and left side lower back pain. This endo caused so much depression and pain. While waiting for my surgery, this was my only option. At the beginning, I had experienced various symptoms such as nausea, bone and muscle aches, headaches, and mood swings. I gave myself a month, and slowly, they started going away. I am also eating healthy and doing exercise every day to keep myself healthy. The medication is helping me! I am happier after taking it. The side effects listed on Advil/Tylenol are much longer than this. I would recommend you trying first."

• Mar...
• Taken for 1 to 6 months
• May 29, 2020

For Endometriosis "I was reading the other comments, and they are actually very accurate. The effects are strong, and I personally decided to take some vitamins and drank or ate extra calcium. Some of the effects that I felt more often are the hot flashes, the headache, and the mood swings, yet the mood swings were not even near as when I have my normal period. I did like the treatment, I did not have my period for that whole time, and it felt great. I had some problems sleeping, but I drank melatonin or just meditated till I fell asleep. I didn’t have pain during sex either, which was great, because, as we all know, endometriosis doesn’t make it easy during sex. I actually really truly liked it. Of course, I will recommend trying other things before trying Orilissa, maybe try some hormonal birth control and some naproxen, but remember to always ask your doctor first. If it doesn’t help, then ask for Orilissa. Personally, my pain and bleeding were so bad that I didn’t mind the effects of the Orilissa."

• 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!"

• sha...
• Taken for less than 1 month
• May 13, 2020

For Endometriosis "Never take this medication. EVER. I promise it’s not worth it. The side effects are horrific. Hot flashes, mood swings, nausea, dizziness, difficulty with vision, and the headaches! Oh, the headaches. I took my prescribed migraine medication four times in 6 hours (extremely not recommended) before it even started to go away. These aren’t occasional side effects. 24/7 I could barely get out of bed because of the general malaise. Not sure how this drug passed any trials, and I’m not surprised that AbbVie (the manufacturing company) has had lawsuits. I discontinued this pill after 9 days. I can’t handle it at all."

• 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."

• 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."

• Bre...
• Taken for 6 months to 1 year
• June 19, 2020

For Endometriosis "I was given Orilissa 200 mg for 6 months for stage 4 endo. I did get hot flashes, mild headaches, neck pain, dizziness, and mood swings. Toward the end of the six months, the neck pain and headaches really started to bother me, and I had to take Tylenol and Advil every day. Having said that, I would recommend this drug to anyone who has severe pain from endometriosis. It did not completely get rid of the pain, but it did relieve the worst of it. After stopping, my pain came back about two months later, and that’s when I really appreciated this drug because I remembered how torturous this pain is. I’ve now started taking 150 mg Orilissa until I can get robotic excision surgery."

• Mon...
• Taken for 2 to 5 years
• August 10, 2020

For Endometriosis "I was able to take part in the clinical trial for Orilissa. This medication is great but has its flaws... Before starting this, my endo pain was a 10/10 on most days, there were days I could not even get out of bed until I started taking this drug. Now, like most others have said, there are side effects. I already had a history of depression, anxiety, and insomnia, so I did not notice that these got worse once I started the drug. But the nausea and mood swings.... Boy, oh boy! They are a bit rough sometimes, overall, I think it's a great medication. Don't forget, we are all different and have different experiences. Mine has been pretty good, and I will continue to take Orilissa until I have children and can get a hysterectomy."

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

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."

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

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 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."

• 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."

• Anonymous
• June 29, 2019

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 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."

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

For Endometriosis "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."

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

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."

• Anonymous
• February 6, 2021

For Endometriosis "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."

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

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."

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

For Endometriosis "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. I also felt very emotionally unstable. I could have coped with the hot flashes and mood swings if it wasn’t for the extreme nausea, which was exhausting and a deal breaker for me."

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

For Endometriosis "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. I also felt very emotionally unstable. I could have coped with the hot flashes and mood swings if it wasn’t for the extreme nausea, which was exhausting and a deal breaker for me."

• 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."

• bmf...
• Taken for 6 months to 1 year
• March 26, 2022

For Endometriosis "I have been on Orilissa for almost a year. I went on the 200 mg dose originally, and it helped a lot with symptoms of endometriosis, but I was getting hot flashes and night sweats, and it has caused my mood to change a lot. I switched to the lower dose after about 3 months and have been on it since, but I feel like it is slowly becoming less effective. I don’t get hot flashes as often on the lower dose, but I almost feel as though my emotions are dampened or very extreme, so beware of this if you have a history of depression/anxiety. I love the company, though they had a nurse who checked in on me to make sure I was doing okay and was able to get my prescription filled, and their program to pay for it is great if your insurance doesn’t cover."

• 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."