Elagolix and Insomnia: What Users Say

• Scu...
• July 21, 2020

For Endometriosis "Before I started taking Orilissa, I read the reviews and got worried, so I wanted to share my experience to hopefully alleviate some anxiety for someone else. I started taking 150 mg of Orilissa once a day 3-4 weeks ago. I began taking it while I was having an endometriosis flare-up, and the pain decreased every day until it disappeared 2 weeks ago. I had a headache for the first couple of weeks, but that's gone now too. I started having night sweats, but I got used to having those when I tried Aygestin, which didn't help the pain at all for me. I initially took it at night, but that gave me insomnia, so I switched to taking it in the morning, and now I actually have energy during the day. I've honestly never felt this good in my life. I have a history of depression and anxiety. My mood has improved, partly because I'm finally not in pain for the first time in almost 20 years. It's life-changing. I'm only sad that I'm limited to taking it for 2 years. I guess that's when it'll be time to get an oophorectomy."

• 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 :-("

• Bee...
• Taken for 1 to 2 years
• March 5, 2021

For Endometriosis "I was diagnosed with endometriosis when I was 17 and had a laparoscopy the following year. I have been on almost every birth control or endo treatment, and this is the first med that I've been able to take that actually helped my symptoms drastically. I didn't experience most of the initial symptoms as I have been on a continual pill treatment for the last 10 years, so I haven't had a period or PMS symptoms for nearly a decade. I read many comments saying that they took it with a contraceptive or other hormonal pill, and that is a big no-no and the main reason why they had such horrible side effects and experiences. I did/do experience side effects, but I would rather have hot flashes, joint pain, trouble sleeping, and night sweats than live every hour of my waking life with unbearable cramps, bloating, back pain, and all of the other symptoms I had with my endometriosis. A lifesaver and a must-try treatment for any woman suffering with endo."

• Jes...
• Taken for 1 to 6 months
• October 16, 2019

For Endometriosis "I have endometriosis and PCOS. Prescribed Orilissa 150 mg for 24 mos. Took Orilissa from 8/13-10/13, $5.01 after insurance and savings card. Side effects on Orilissa: all over, deep back pain. Headaches and eye strain. Thinning hair on scalp. Acne all over chin. Dry skin. Rash on back and sides. Pain in abdomen. Sour stomach and/or nausea, insomnia-even with sleep aids. Constantly feeling bad about myself. Mentally, you feel “different.” I went to refill my 3rd month since they said it takes a while to see results. The amount after your first two scripts changes based on your insurance. Mine covered 80%-so it is now $181.79. This should be something doctors should be aware of. Not something they have you put in your body for 2 months before finding out the cost jumps up. Side effects as of today, day 3 of no Orilissa: insomnia worse than ever on day 2, day 3: cramps/pain in abdomen, back pain everywhere, headache, light sensitivity. Neck stiffness and pain."

• 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."

• HAZ...
• Taken for less than 1 month
• September 5, 2020

For Endometriosis "I’m on week 2 of taking Orilissa BID. I just finished my period (first one on Orilissa), and for the first time in my life, I had no pain during a period. My daily pain has decreased significantly as well. I have not noticed any mood changes, I already have anxiety. I have noticed some insomnia. The side effect that is most affecting me, though, is getting nauseous when eating and not being hungry at all. I’m having to eat small portions throughout the day and force myself to eat them (which for me is difficult because I forget to eat lunch all the time anyway). I’m finding ways to handle that. It’s actually what brought me to this site. Worth it to not be in pain personally."

• 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."

• 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."

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

For Endometriosis "Thought this drug was too good to be true. The 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."

• phi...
• Taken for less than 1 month
• April 4, 2023

"I have to say I agree with all the other reviews to not take this drug. I only took this drug for seven days, and it was enough to make me think I was going to die. I took Lupron before I was prescribed this medication before starting my second IVF cycle for my adenomyosis. Lupron was way better in regard to the side effects. I asked my doctor from Genesis Fertility which one was better, and he said they work the same way, boy, was he wrong. On the second day on this medication, I started spotting, hot flashes, night sweats, horrible dry patches on my face, joint pain, migraines, blurry eyes, insomnia, and terrible mood swings. These symptoms got worse with each passing day, especially the bleeding. By day 5, it was as if I was on my period again, I was no longer spotting. On the morning of day 7, I decided that if I continued to take this drug, it was going to kill me. I still wanted to tough it out and take the drug because I paid $1200, but ultimately I decided not to continue."

• Jex...
• Taken for 1 to 6 months
• August 14, 2021

For Endometriosis "I've been doing trial and error of medications and OT and pain clinic for my endo for over a year. This was kind of a final thing for me to try before discussing a hysterectomy. I was extremely skeptical since I already have mood issues from mental illness, but I was desperate. Immediately upon taking it, I was extremely nauseous, and I had the worst migraines that persisted daily for two weeks. I would have stopped it immediately just from that, but unfortunately, if I stop, I'll end up in the hospital from pain if I'm left unmedicated. So I've been on it three weeks now, mixed with the max dose of norethindrone. I bled for the first two weeks, my daily cramps are still horrible, and the nausea and headaches are still there, though not as bad. I also have horrible insomnia during the night, yet I'm completely exhausted during the day and just want to sleep. This is the most side effects I've ever had from a medication. I absolutely don't like this med, but I can't even discuss getting off of it until September 1st."

• Reb...
• Taken for 1 to 6 months
• December 20, 2022

For Endometriosis "I was on it in 2019 for approx. 3 months. I’m also on some really strong epilepsy meds; and this was one of 2 medicines approved by my neurologist and gynecologist for my endo. I had some severe joint pain; an increase in my migraines, and an inability to sleep. And while it did get rid of my period, the side effects were not worth staying on the drug."