Lupron is a very commonly used medication, and almost every person with endometriosis has used it or heard its name. Although there are some serious concerns about the short and long-term complications related to Lupron and similar drugs, we have seen more of them recently. This increase in the number of drugs means there will be a growing flush of money to advertise them on platforms that patients use for their education, such as Google. So when patients search “endometriosis,” these drugs will be on the top of the search results as a treatment for endometriosis.
But why did these medications’ production, advertisement, and usage increase despite their adverse effects and discussions around them? A part of the problem is that not many people know about the long-term side effects of the drugs. You might have shared your experience elsewhere, but it is not visible to most people. This lack of stories of real people who took Lupron and similar medications has led to more people taking it without enough knowledge of the effects. And because it has become such a lucrative market, more companies make them now and educate people to take them.
This cycle of lack of accessible real-world experiences and increased production and usage of Lupron and similar drugs for endometriosis needs to stop! We need to ensure enough factual information about these meds comes from endo patients’ first-hand experience. So everyone who searches for endometriosis and these medications should learn about the actual impacts of these drugs on real patients. This information can help many patients and doctors make informed decisions about these drugs.
To address this problem, we at iCareBetter have created a dedicated page for our endo community members to share their experience with the long-term side effects of Lupron. We aim to make real-world experiences accessible, and a top result in Google searches. If you want to join this education campaign, please use the link below to write your experience with Lupron’s long-term side effects. And share this post with your circles.
Read more:
How to Find an Endometriosis Specialist for Diagnosis
Laparoscopy: A Common Treatment for Endometriosis
My mind is completely blown reading all of these stories about the effects of Lupron! I have been searching and searching for the answer to why the hell I am hurting so badly in my lower back, my outer hip area, my pelvic area, the pressure, and all of this has effected my feet as well. I try daily to make myself get outside to walk but I can only make it a block before I’m ready to give up and a couple of blocks to convince myself it’s just too much to fight it so I go back home and fight back constant tears. My mental health has suffered drastically to the point that I could no longer work which ultimately led to us becoming homeless. We remained homeless in LA for almost 6 years which left me out of touch with medical information and news of any kind really that whole time. At this point I’ve secured housing over the past year and once I achieved that I had decided my first focus would be on my health and repairing the damage and finding answers for the immense pain I was feeling. I want answers and I need it fixed! I advocate for myself as best I can but am only able to through knowledge right? Now here I am reading what all these females are recalling and I’m so upset because I honestly don’t recall my gyno ever telling me anything about long term effects at all!! Sure she explained what my 9 month treatment was supposed to help and some side effects during use that I could endure but she also assured me that there are medications available to treat those symptoms and that Lupron treatment was my best option. She even filed everything for me to be able to receive the treatments completely free because the pharmaceutical company donated my dose every 3 months. Had I known that this many years later I’d be dealing with such extreme pain in my bones, joints, and lower region that prevent me from having even a semi active life now I definitely would have told her she was nuts! I too had pain pills prescribed to an extreme degree on a monthly basis and addiction spiraled out of control for far too many years. I now won’t ever take pain pills again although I guarantee I need them way more now then I did for the pain back then. For reference my treatment was approx 10 years ago, I’m now 48 and menopausal, I THINK, experiencing pain during and after intercourse, dryness, and depressive moods that I can’t find medication to help me deal with. Speaking of bone loss I assume that could also include loss of teeth because that has also been a very big problem for me personally but I’m not sure if it was Lupron that contributed to that as much as another medication I had to take not long after my treatment. If there is a class action suit brought up I just want to say that I’d join that in a heartbeat and so should everybody on here with these experiences. Our lives are worth more then they considered before endangering our health!
I was put on Lupron depot (I think that the Lupron used for fertility treatment and Lupron depot, used for endometriosis and breast cancer [and prostate cancer in men], might not be exactly the same thing?) for 4 months, after 5 weeks on orilissa, a pill medication that does basically the same thing.
I have had multiple ovarian cysts, 4, in one year. 3 emergency surgeries and one rupture. Corpus luteum cysts. The OBGYN put me on Lupron to shut down my ovaries and hopefully reset them. Usually they would prescribe combination birth control pills (estrogen and progesterone) but I can’t take estrogen bc I have a certain kind of migraine that is worsened/caused by estrogen and there’s a risk of stroke with estrogen. So. Lupron depot was my only option.
I have had horrible hot flashes, night sweats, insomnia (exhausted but can’t fall asleep and then waking up every few hours with night sweats), fatigue, nausea, and I didn’t know brain fog was a side effect but now that I do, that makes sense. I’m concerned about bone density loss but was told repeatedly all of the possible damage done by Lupron depot is reversible if taken for 6 months or less. Reading this, I am scared that my side effects will continue or that any damage will be permanent.
During the treatment period I continued to have bad pelvic pain, ovarian pain. I also feel incredibly light headed and like I could pass out at any moment and have felt that way for months. I gained weight, as well.
I hope to never have to take it again and for everyone reading this, you are not alone and I’m so sorry you have not been taken seriously by our medical system. You deserve to be listened to and treated with respect. There are a bunch of great books that have recently come out about the history of sexism in medicine and why it is that things like endo are still so poorly managed.
Lord after reading these I have to pause and stop the tears. This page is my life. Everyday. I took Lupron back in 1993-1994 for endometriosis. I gave birth to a beautiful baby boy in 1998. In 2002 I had a meningioma the size of a tennis ball removed. After that I did pretty well until about 2014-2015. The hip pain and leg pain is awful. I take so much medicine it’s in unreal. Thank you my Savior to put this in my head and bringing me to this group. I feel some hope now!
I wish I saw this thread before taking Lupron for fibroids and endometriosis. I’ve just stopped taking it after 4 months of trying and failing miserably to deal with the side effects. I had hot flashes (which were the least of the terrible side effects), brain fog that wouldn’t go away and still hasn’t fully, appetite swings, persistent insomnia, headaches, chest congestion ( I woke up every morning with a tight chest and had to cough out thick phlegm to relieve myself). But the worst of all is how Lupron damaged my bone health, left me feeling dissociated from my body and left me exhausted every single day. I went from being active and able to take on challenges to only being able to do the bare minimum. I woke up one morning and had to lift my left hand with my right hand because I was in so much pain, I couldn’t get up. My leg bones are do painful, I now walk like I need a stick every morning before my joints loosen up. I cry when I think of who I was before this medication and how I can’t wait to get myself back. Lupron has aged me 10 years in 4 months and here’s the kick – it doesn’t help with endometriosis. Yes, it stops pain (while replacing it with others), but it doesn’t shrink anything like the doctors say. They put you on it to buy themselves time- I’m expected to wait 2 years for surgery in Canada.
I’ve decided to explore other options to get myself back. This has been the worst experience of my life.
I’m convinced that Lupron is the root cause of my autoimmune disorder, which attacks one of the proteins that bond the skin together. I lost 80% of my skin, several places bone was visible where the tissue had become necrotic. I was disfigured at age 22. Due to the pain I was prescribed heavy narcotics to which I became addicted. This stuff destroyed my life and altered the trajectory of my entire life.
I was put on Lupron depot (I think that the Lupron used for fertility treatment and Lupron depot, used for endometriosis and breast cancer [and prostate cancer in men], might not be exactly the same thing?) for 4 months, after 5 weeks on orilissa, a pill medication that does basically the same thing.
I have had multiple ovarian cysts, 4, in one year. 3 emergency surgeries and one rupture. Corpus luteum cysts. The OBGYN put me on Lupron to shut down my ovaries and hopefully reset them. Usually they would prescribe combination birth control pills (estrogen and progesterone) but I can’t take estrogen bc I have a certain kind of migraine that is worsened/caused by estrogen and there’s a risk of stroke with estrogen. So. Lupron depot was my only option.
I have had horrible hot flashes, night sweats, insomnia (exhausted but can’t fall asleep and then waking up every few hours with night sweats), fatigue, nausea, and I didn’t know brain fog was a side effect but now that I do, that makes sense. I’m concerned about bone density loss but was told repeatedly all of the possible damage done by Lupron depot is reversible if taken for 6 months or less. Reading this, I am scared that my side effects will continue or that any damage will be permanent.
During the treatment period I continued to have bad pelvic pain, ovarian pain. I also feel incredibly light headed and like I could pass out at any moment and have felt that way for months. I gained weight, as well.
I hope to never have to take it again and for everyone reading this, you are not alone and I’m so sorry you have not been taken seriously by our medical system. You deserve to be listened to and treated with respect. There are a bunch of great books that have recently come out about the history of sexism in medicine and why it is that things like endo are still so poorly managed.
Lord after reading these I have to pause and stop the tears. This page is my life. Everyday. I took Lupron back in 1993-1994 for endometriosis. I gave birth to a beautiful baby boy in 1998. In 2002 I had a meningioma the size of a tennis ball removed. After that I did pretty well until about 2014-2015. The hip pain and leg pain is awful. I take so much medicine it’s in unreal. Thank you my Savior to put this in my head and bringing me to this group. I feel some hope now!
I wish I saw this thread before taking Lupron for fibroids and endometriosis. I’ve just stopped taking it after 4 months of trying and failing miserably to deal with the side effects. I had hot flashes (which were the least of the terrible side effects), brain fog that wouldn’t go away and still hasn’t fully, appetite swings, persistent insomnia, headaches, chest congestion ( I woke up every morning with a tight chest and had to cough out thick phlegm to relieve myself). But the worst of all is how Lupron damaged my bone health, left me feeling dissociated from my body and left me exhausted every single day. I went from being active and able to take on challenges to only being able to do the bare minimum. I woke up one morning and had to lift my left hand with my right hand because I was in so much pain, I couldn’t get up. My leg bones are do painful, I now walk like I need a stick every morning before my joints loosen up. I cry when I think of who I was before this medication and how I can’t wait to get myself back. Lupron has aged me 10 years in 4 months and here’s the kick – it doesn’t help with endometriosis. Yes, it stops pain (while replacing it with others), but it doesn’t shrink anything like the doctors say. They put you on it to buy themselves time- I’m expected to wait 2 years for surgery in Canada.
I’ve decided to explore other options to get myself back. This has been the worst experience of my life.
I was on Lupron, twice to treat my endometriosis and to reduce lesions so I could get pregnant. First series was in my late twenties for six months. Second was for 3 months in my early thirties. While I did get pregnant and have two children, I ended up needing a hysterectomy(kept my ovaries) due to the endometriosis and adenomyosis at the age of 36. That along with recurring hot flashes, consistent bleeding and abdominal cramping at that time.
Fast forward: I’m now 51. Hot flashes went away for a couple of years. I’ve been having them on and off since the age of 38. Now I believe I’m going through full blown menopause. My hot flashes and night sweats are awful. I am having brain fog and vaginal dryness. While I understand this is menopause, when I saw my physician for my physical, we discussed this. She did say that because of the Lupron therapy, my menopause symptoms may be stronger and more prolonged than someone that didn’t have this treatment.
While I’m happy I had my two children, I’m uncertain if this therapy was the reason as I also had surgical procedures done in that same timeframe. Looking back my advice would be to discuss ALL options for care and especially any long-term residual effects as you age.
After the injection I’m on high blood presion
, pain on legs a arms, dizziness after eat, some times I can’t move o wake up, I have to
request for help. I can’t concentrate, I can’t work with out pain on my body. Doctors dint help much. I’m sure the lupron is terrible medication find other options.
I have Endomitosis users of Lupron, beware of long term effects which include lower back pains, lost of vision, fatigue and joint pain. The doctors tell you it’s uncommon for side effects but thats not true! Yes the pain from endometriosis will stop for a while but the side effects from lupron is worse than anything!!! I lost my hair I got depressed…. I mean it was horrible im considering sueing ! Someone needs to be sued we need a class action lawsuit or something this isn’t right!
I have a love-hate relationship with Lupron! I have stage 4 endometriosis which almost killed me by cutting off my color and then 2 months after that surgery I found I had stage 2 breast cancer. Then endo came back! I can not have any estrogen in my body or my cancer and endo can creep back into my life. I couldn’t have my uterus removed due to the endo gluing all my parts together. I’m a mess. Lupron has stopped the worst pain I’ve ever experienced, but I do suffer from the side effects. I have brain fog, and stiff joints in the morning (like can’t walk) until I stretch it out. I did have hot flashes but they are under control now with effexor (an antidepressent I take for the hot flashes). I hope when I get to get off of these shots I have a better quality of life, but at least I am still here.
I’m convinced that Lupron is the root cause of my autoimmune disorder, which attacks one of the proteins that bond the skin together. I lost 80% of my skin, several places bone was visible where the tissue had become necrotic. I was disfigured at age 22. Due to the pain I was prescribed heavy narcotics to which I became addicted. This stuff destroyed my life and altered the trajectory of my entire life.
I have been on depot Lupron once a month for 6 months now to treat stage 4 endometriosis that was only discovered after an ovarian cyst ruptured. I could go on about how my pain for years was dismissed as IBS, depression was just going through a rough patch, etc but I know if you are here, I’m just preaching to the choir.
Anyway, my first injection was given to me in the hospital shortly after the laparoscopic surgery, and my chest and face were flush red after only a few minutes. It eventually cleared up, so I went to the obgyn who did my surgery for the next 5 doses. Pretty severe hot flashes, night sweats, insomnia, and nausea, but nothing that was too difficult to handle. At least the painful stomach cramping was greatly reduced. IBS cured, I guess ;p But after the 5th shot, I started noticing some pain in my neck, back, shoulders, and feet. I thought maybe I was lifting things improperly at work, so I stretched more and paid careful attention, but the pain was still getting worse. Now after my 6th shot, my right hand and shoulder feel like they have arthritis, the pain is constant. My feet are almost immovable if I’ve been sitting or laying too long, and my neck and shoulders are in pain no matter what position I am in. I wasn’t convinced last month that this bone and joint pain was from the depot shot, but now after reading people’s stories and sounding so familiar to mine, I’m ready to stop treatment before this pain becomes debilitating. I firmly believe this pain is associated to the depot Lupron injections. While the pain from my endometriosis does seem to be greatly reduced, I’m not sure I would go this route again, as the pain I experienced before has now been replaced with new and different pain. I hope that your experience involves relief and peace, and know that you are not alone in this journey you are on.
I had 2 lupron shots after a laparoscopic procedure to remove endometrial growth. I was warned of certain side effects, but told they were ‘uncommon’. I began having hot flashes and incapacitating nausea within a few months. After the second shot, it was worse. Two years later, I still suffer from intense (random) hot flashes and also consistent nausea that is so severe I cannot sit upright.
I wish I had been warned of the severe side effects I might be experiencing after the treatment. I truly feel like this treatment has ruined my quality of life.
I took the lupron injection one time in July 2022. This was the worst decision of my life. I have fibroids , that was the reason my former OBGYN suggested lupron. I hesitated about 6 months after constant pressure from my former OBGYN to take lupron. I have severe headaches, crazy night sweats, no appetite, nausea, brain fog, my legs,hips & arms are constantly in pain. Oct.2022 was time for my next shot , but I will not be getting it. My muscles in my thighs cramp & hurt like I have a marathon. I do not recommend this horrible medicine on my worst enemy or anyone. I only received the injection 1 time & I regret every moment of it. Also I have been bleeding since September 2022 & it’s now October 17 & I’m still bleeding & in pain.
I took Lupron to prepare for intrauterine inseminations throughout the years of 1996-2001. I did conceive but pain from endometriosis became worse. I have had back pain and lower abdominal pain for 20 yrs. Not painful enough for narcotics, but a full radiating pain in the pelvis. My abdomen is distended, I have fainting spells, terrible anxiety and feel sick a lot. I have no idea if Lupron is what caused this, but feel at a loss on where to go next or if it’s in my head
I took Lupron for many years due to excessive bleeding in 2004. I had some major mood swings and anxiety. I gain 55 pounds in the first 2 years and discussed with my doctor that I would need to try something different. It took a year to get my period back. It did not help my endometriosis. In 2019, I had bled for 3 months straight. After multiple procedures, I begged for a hysterectomy and succeeded. My ovaries were fused to the back of my uterus and had adenomyosis. Ovaries were saved and uterus was removed. I was gaslit and shamed for years about the pain prior to surgery. Listen to your body. I never felt good on the Lupron.