Leuprolide and Pain: What Users Say

• Bar...
• Taken for 1 to 6 months
• May 2, 2020

For Prostate Cancer "Diagnosed with prostate cancer in April 2019, had a 6-month Lupron shot in May followed by 45 radiation treatments ending in early September. Went on vacation and able to do 2-3 mile hikes over rough terrain with only a little fatigue. Went in for a second shot in early November and they changed me to Eligard. They said it was virtually the same product. Within 2 weeks, I developed intense pain in my hips that has not gone away. Can hardly walk to the mailbox any longer due to the pain. Dealing with mood swings, minor depression, trouble sleeping, and have gained 30 pounds. Due to go back next Wednesday for another 6-month Eligard shot. Not going to happen."

• Sar...
• January 2, 2016

For Endometriosis "Don't let the online reviews cheat you out of a better life! I actually delayed getting Lupron by a year because I was so scared by the online reviews and reports of adverse reactions/symptoms. However, my experience was wonderful. My doctor put me on the ad-back and I did have a few hot flashes initially, but I would take those 1,000x over the pain my endometriosis caused me. I also took calcium to offset any bone density loss. Please, please, please work with your doctor to decide if Lupron is right for you. I did it and now I am on my way to restoring my quality of life."

• Ste...
• Taken for 1 to 6 months
• January 29, 2021

For Prostate Cancer "My side effects from Eligard are extreme bone pain, joint pain, testicular pain, my penis shriveled up like I had jumped in ice water and stayed icy cold for several days, night sweats, night terrors, nightmares, and brain fog. I had a CV event 3 days after, wound up in the emergency room with extreme difficulty and pain urinating, especially at night. According to the manufacturer, this is supposed to be used for palliative care. Well, I guess they don't know the meaning of palliative care. I wish I had never started this treatment."

• Len...
• July 13, 2016

For Prostate Cancer "Eight months into Lupron plus Casodex, and I am refusing the next three-month shot. PSA went from 5.7 to 0.2 to 0.1, and I am just finishing up nine weeks of radiation. GL scores were mostly 9's, but no metastatic found. To say a less common side effect is loss of libido is just plain BS. About a month after the first shot, I was done with sex. The doctor said once the testosterone is gone, that's normal. Little aches and pains linger, my testicles shrink, I lost all hair under my arms and it's slow-growing elsewhere. Sometimes I seem to be in a fog mentally. Hot flashes like you wouldn't believe until they offered me other meds, which help somewhat. I put on five pounds of blubber below the belly. Lack of energy as well. It works, but I think doctors keep you on it too long for stage 1 or 2 cancers."

• Anonymous
• Taken for 1 to 6 months
• August 26, 2019

For Uterine Fibroids "I got my first Lupron shot on 07/22/2019 for fibroids. My obgyn decided to put me on Lupron to attempt to shrink my fibroids/Uterus so I can have a safe hysterectomy. I haven't had a menstrual cycle since 07/22/2019, that's awesome. So far I am experiencing: the first week my buttock was very sore/tender from the injection site. I am experiencing a lot of hot flashes throughout the day and at night, they last a few minutes. No night sweats. My body, but mainly my legs, ache and feel tingly/numb. Restless nights, having trouble staying asleep. My hair is now very dry and brittle and hair loss (it was healthy before). Vaginal dryness. Memory problems, trouble focusing. I am forgetting a lot of things. Major mood swings, from very angry to crying. Increased appetite (carb craving). I hope all this is worth it in the end. None of these side effects are unbearable, but I definitely do not feel like myself. Round 2 coming up on 10/22/2019."

• Lex...
• October 5, 2015

For Endometriosis "Don't do it! I got the 3-month shot 1 month ago and have had these symptoms so far: constant and severe pelvic pain, sharp lower back pain, pain when the bladder is full and when emptying, lots of migraines and headaches, nausea, vomiting, high anxiety, extreme fatigue, very low mood swings, loss of appetite, and insomnia. The worst symptom of all is the severe depression, I have had several thoughts of suicide. I would rather deal with just the pain than all of these together. I was told by my doctor the only symptom I would get is hot flashes, and she had only heard of success stories with this drug, that was a total lie. If you react badly with other birth controls, do not do Lupron, it's a living nightmare!"

• Kri...
• February 18, 2020

For Endometriosis "Ok y’all, I admit before taking Lupron Depot 11.25 mg, 3-month injection; I read every review I could find. I was disappointed to find mainly negative reviews, but I took a leap of faith and decided to get the injection anyway. Within the first month, I truly regret that decision. In tough situations, I typically look for the silver lining. However, I was not prepared for the extreme fatigue (no more 5 a.m. workouts), hot flashes all day, every day, night sweats that literally leave my side of the bed soaked (it’s totally gross), but the topper is body aching and hurting down to my muscles and bones like I have the flu... every day going on 63 days straight. I am 38 years old, in good shape, active when I started the injection. I was 115 lbs; I am now 130 lbs with no energy. Needless to say, I am declining the second treatment and look forward to 2-6 months when all of the side effects should fully wear off and hopefully get my normal life back."

• See...
• Taken for 1 to 6 months
• June 27, 2016

For Endometriosis "I would like to address women who already struggle with depression, insomnia, or mood disorders, like myself. If you're already bad off, don't do this to yourself, it might be the final 'push.' I got the 3-month shot (+add-back), and it made me suicidal. My moods went from extreme anger to sobbing, insomnia, hot flashes, and my left arm kept going numb in daily activities! This went on for a month, at 2 months, I leveled out. Not far into the 3rd month, the hot flashes came back, cold sweats (felt like drug withdrawal), and my pain was back! I went to my OB/GYN 1 week early because of this to find I had grown 11 new painful cysts! It didn't even work, and to stop it is also unpleasant (withdrawals). Worst med decision I ever made! HELL!"

• Tir...
• Taken for 1 to 6 months
• February 17, 2019

For Endometriosis "This made my pain much worse. It is the worst experience I've ever had with a medication! The side effects are much worse than the endo pain! This medicine shouldn't be given to women for endo! I have been in the worst pain and depression that I've ever had in my entire life thanks to this medication."

• Mar...
• March 25, 2020

For Uterine Fibroids "I feel the obligation to share my experience as it might help someone looking for some answers. I was prescribed this Lupron Depot shot prior to my second fibroid surgery with the intention of shrinking a large fibroid, as the first surgery was unsuccessful at removing the whole thing. I was bleeding significantly due to the fibroid, and the only benefit of having this shot was that it did stop my bleeding completely for 3 months. Other than that, I cannot ethically say anything positive about this shot. I started to have these large, painful cysts on my face that have yet to subside. It’s been 6 months since I got a 3-month dose shot, and my face is still covered in cysts. Ironically, this shot also made my fibroid grow bigger. It took an additional 2 attempts to remove the fibroid. The whole point of the shot was to shrink it so only 1 more attempt would be needed. Please do your research. This shot completely messed up my hormones."

• Pat...
• Taken for 1 to 2 years
• February 7, 2022

For Prostate Cancer "This is an update... I posted last year (2021). I have now had 5 shots of 3 months of Eligard. I only have 3 left to complete the 2-year treatment. I had (have) Stage 3 prostate cancer, it spread to the lymph nodes, but no further (they think!). No surgery since it spread... I had my last (45th) radiation treatment 6/9/21. Back to the Eligard. I was about to stop (after 3) or slow down the injections due to the crappy side effects, but the oncologist talked me into continuing. I am counting the months until I am done. My biggest side effect is bad headaches for several weeks after each injection. Yes, I get the hot flashes, I'm dizzy... sleep sucks, joint pain.... and now my knees are very painful. My PSA did drop from the mid 20s to .06 (almost nothing). That's the good part, I guess. I'm just hoping I can tolerate it all. GOOD LUCK!"

• Mom...
• Taken for less than 1 month
• November 11, 2013

For Endometriosis "My daughter (19) was given Lupron immediately after surgery to remove endometriosis. The doctor came to us right as she was in recovery and said she was giving her Lupron to suppress the cause. No explanation of side effects... how I regret it. She had to leave college... and the pain, weight gain, lack of concentration, etc. have been traumatic for us all. It takes YEARS to get this out of your system! I regret EVERY day that I let this happen to my daughter. I should have asked the questions, but I trusted the doctor."

• Ano...
• Taken for 6 months to 1 year
• March 29, 2025

For Prostate Cancer "After about a year of Lupron injections every 90 days, I have developed osteoporosis in my sacroiliac area with much pain. After overdosing on ibuprofen for a month or so, they gave me Tramadol 50 mg every 6 hours. With this, it allows me to function and not be mostly bedridden. Blood analysis shows testosterone and PSA barely detectable. This has stalled the progression of cancer, including bone. They are supposed to give me something to help with this osteoporosis. I'm 81, always been active, moving furniture, etc. I do have small bones, 7-inch wrist. They say that I already had an onset of osteoporosis; I don't think so, except for the last year, caused by this Lupron. My testicles have shrunk way down. I think after my 90 days are up, I'll knock it back to at least 4 or every 6 months. Blood analysis should keep me informed."

• cak...
• March 2, 2016

For Endometriosis "I was diagnosed with endometriosis and polycystic ovaries when I was just 16 years old. I'm now 22, and I've gone through 9 birth control pills and 9 different gynos. I had a laparoscopic surgery when I was 17, which removed scar tissue and large cysts from my ovaries. After the surgery, I was on birth control (Seasonique, which is wonderful for endometriosis), and up until a year ago, I hadn't had many issues with pain. I started to get the pains again, along with bleeding for 3 months on birth control, so I went ahead with Lupron. After reading up on it, I was hesitant but moved forward. It stopped the bleeding, but the pain is still there, and now my joints ache every day, and also depression and suicidal thoughts are always there. Do not do it."

• mom...
• Taken for 1 to 6 months
• June 18, 2015

For Endometriosis "I took the shot for 6 months. I had issues that I could tolerate, such as vision change. The injection would shoot pain across my lower back. Well, it's been 8 months since I had a shot. It took me 2 months before my period returned. I recently started experiencing pain in my belly button. Vision was getting worse, mood swings. The end of April, my period was bad, then 2 weeks later, I had another one. I was ready to have everything removed. I had given up hope of having a baby... So, out of the blue, I missed my period, and now I'm 5 weeks PREGNANT!! I wish everyone good luck and hang in there!"

• Ano...
• Taken for less than 1 month
• December 11, 2018

For Endometriosis "I received my first shot almost 2 weeks ago. I am on the 3-month dosage. Absolutely no side effects the first couple of days, but pelvic/abdominal pain began day 3. My period came as normal on day 12 of getting the shot. I was really hoping to not have any at all. I will gladly deal with the more common side effects if my pain and period will go away! Only a few bouts of nausea and moments where I’ll feel so sad. I’m 39, no kids, and have been suffering from debilitating, life-altering pain since 12! I’m praying this helps!"

• Des...
• February 20, 2016

For Endometriosis "Desperate for relief after 2 surgeries within 3 months of each other, I was so hopeful about this medication. I ignored the reviews and got the shot (11.75 dosage administered every 3 months). I regret my choice so much. First, the expense! Even with insurance, my out-of-pocket was $1,100. The mood swings were so bad that I became suicidal. I've gained 20 pounds that exercise and nutrition can't shed. The hot flashes were controlled by an OTC called Estroven. The pain did subside, but only for the 1st month after each shot (I got 2 shots total). Now, the pain is back and worse than ever and I'm only on month 5 of the treatment. Surgery #3 scheduled in 2 weeks. This med is NOT worth the side effects."

• Ali...
• October 24, 2013

For Endometriosis "I just got my first shot 10 days ago. Was bleeding 2 weeks before the shot, and it has not stopped yet. Pain has gotten a little more intense and has interfered with my sleep. Skin is also more dry than usual. My fingers are crossed that this will work. I have had very painful cycles since I was a kid, and I'm ready to not have to call in sick to work and miss social activities due to pain. No hot flashes, mood swings, or any other side effects, maybe due to the progestin I'm on. Will probably post in another couple of weeks."

• des...
• Taken for 1 to 2 years
• January 15, 2025

For Prostate Cancer "Disclosure: the patient is a health care professional in the field of dentistry. I am an eighty-eight-year-old man who has stage four metastatic prostate cancer (metastatic to bone and local lymph nodes). My oncologist prescribed Lupron Depot injection every three months (in office) and in conjunction with oral medications Abiraterone Acetate plus prednisone taken daily at home. I have not experienced any undesirable side effects (including pain) from the infusions of Lupron Depot. The infusions are injected into the butt muscle. My tumor status and body responses are monitored with clinical laboratory tests every three months at the office visits. So far, the tumor response has been better than anticipated, and there have been no adverse clinical side effects. My PSA was 17 at diagnosis, and it decreased to >0.07, and it has remained there."

• Ais...
• February 24, 2022

For Precocious Puberty "My daughter was diagnosed with early puberty at the age of 5, and I was told this drug has no side effects. Every time she went for injections, she wasn’t moving properly afterward. The last incident was after her injection, she couldn’t walk. Every time she walked, she went right down. She has pain until today, and it hurts me to see her like this. Please, parents, don’t be fooled by these doctors. I wish I knew."

• Ren...
• May 28, 2018

For Endometriosis "I personally have endometriosis and have had laparoscopic surgery for treatment. I have been told by multiple doctors that adding hormones to your body to lessen your “pain” (in quotes because no birth control has proven to do so for my endometriosis), so I have taken no birth control since my surgery 10 years ago, and it has gotten easier to deal with, not worse! They also offered two other options to stop the pain: hysterectomy/ablation. Either way would be fine since endometriosis will and has eaten up my reproductive organs. After the laparoscopic surgery, it did take me 5 months to heal internally, so if you do this option, please prepare yourself for a much, much, much heavier and DIFFERENT period for at least the first two months. But after, sex seemed easier with less pain, and going to the bathroom (taking a bowel movement) while on and off my period was much easier. Hope my experience helps anyone that has or has been recently diagnosed."

• C13...
• Taken for 1 to 6 months
• September 4, 2020

For Endometriosis "I was given a Lupron Depot 3-month injection. The day after the injection, I was in debilitating pain in my spine, my hands, my wrists, and my ankles, and it only got worse from there. The pain worsened as the days went by, I had trouble getting up, I was drained of all energy, was nauseated, and had pain and stiffness in my hands and wrists to the point I could barely move them. I had horrible, painful popping and cracking in my wrists and ankles, and they would lock up and felt as though my bones were going to break. I had horrific migraines, too. When I called my doctor regarding these effects, they said it'd go away after the trial ended. It's over 6 months since I had my trial, and the pain and stiffness in my hands and wrists didn't go away. I now have tingling and weakness that spreads through my hands, wrists, and arms. I had the laparoscopic surgery last month, and I do have endometriosis. I just wish I'd done the surgery to begin with."

• Lov...
• Taken for 1 to 6 months
• March 10, 2017

For Uterine Fibroids "I was on Lupron a few years ago. For chronic pain, multiple cysts, I was bedridden a week or two of every month. This injection saved my life back then. I lost coverage, so I stopped. Now I have coverage and decided to try it again... it's not working this time! I'm in pain all the time still. I have trouble sleeping at night or staying asleep, my libido is gone... and I'm in the 4th month of treatment and started bleeding and have really bad pains again... and my hot flashes are back. The first month is the worst! The worst period of my life... but there was no bleeding until now... so I would recommend trying the once-a-month doses first."

• Nic...
• Taken for 1 to 6 months
• February 18, 2020

"I was given Lupron depo for my endometriosis. My husband and I had been having issues having a baby. I was supposed to have 3 shots total. After the first shot, it wrecked me. It messed with my bowels, my period was more painful than ever, body pain, insomnia, and extreme fatigue, one night I had to call 911. My skin was burning from the inside out, and my heart started racing to the point where I could barely breathe, and my heart was palpitating. I refused the next 2 shots. Since then, I've continued to have bone and joint pain, fuzziness, I can't retain thoughts or remember simple words. My teeth became really sensitive. It caused nothing but hardship."

• KBa...
• Taken for 1 to 2 years
• February 3, 2020

For Endometriosis "I had a very similar experience to Lora C. I was a mess on Lupron and very much not myself. I couldn't control my emotions, I was either dead inside or crying, there was no in-between. My night sweats were awful, and I was mean all the time. The worst part was probably my memory. I had no recollection of anyone's name, I could recognize their face and the fact that I definitely knew them, but never their names if I had met them after I was on Lupron. The shot also hurts like anything, and hot flashes are real. I was consistently warm all the time. Summer was unbearable. Also, the first few months were the worst endo pain I had ever felt. It was terrible. It finally went away after about month 4 or 5, and I was in a normal range of just feeling pressure down there. It wasn't nearly as painful, but always present."