What are the long term side effects of lupron?

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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:

Managing Endometriosis

How to Find an Endometriosis Specialist for Diagnosis

Laparoscopy: A Common Treatment for Endometriosis

The Different Tests Used to Diagnose Endometriosis 

A Guide to Ultrasound for Endometriosis Diagnosis

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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.

  • Dems answered 1 day ago
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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.

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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!

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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.

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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.

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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.

 

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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.

 

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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.

  • Jennifer McLendon answered 2 years ago
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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

  • Bridget Larson answered 2 years ago
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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.

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During the course of my endometriosis from diagnosis through a life threatening endometrioma that no one seemed to believe or think was important, to my management now… most doctors and medical facilities have zero comprehension of treating a human and they just have been brainwashed to throw different drugs at them. I was told my a specialist hospital to manage my pain and the 11cm endometrioma they said wasn’t an emergency to just take Lupron and it would be fine, which I knew better – it was sign 1 they didn’t know what they were doing. I heard it over and over again in place of actual treatment – just take Lupron. You won’t be okay if you don’t take Lupron. When I showed and told them about all the horrific side effects, even the people I personally knew who were by their own words destroyed by Lupron – it’s like they didn’t even hear that.

there needs to be a very big discussion around doctors and what they’re doing with their degrees. It’s like they just memorize drugs and push drugs and don’t actually get extended education or see that every human is different – and most don’t even believe things are treatable beyond shoving drugs down their throat, which is alarming and very false. The whole Medical industry needs a very drastic makeover.

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I was on Lupron for a year and a half. While it did stop my periods it did nothing else in option to assist with my endometriosis. While on Lupron I had hot flashes which also needed to be medicated by adding in a small amount of estrogen. I was extremely tired and took a nap almost everyday if my schedule allowed it. My anxiety and depression took a real hit and after being off of this medication for a year I still struggle with this the most and can’t find a medication that works and actually helps me. I also gained about 40 pounds in a year and half. Mostly from the hormones and also because I eat when my depression is bad. If I could go back in time I would’ve never taken this medication knowing that the effects would be so strong a year later.

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I took Lupron for 12 weeks last summer to prepare for a frozen embryo transfer.  I had terrible side effects.  Night sweats, insomnia, extreme irritability, loss of libido and weight gain.  My frozen embryo transfer was successful, but I miscarried at 16 weeks and had a D&C.

I’m now about 6 months post D&C and my cycle still has not returned to normal, and I have extremely heavy periods.  Could be from the D&C, but prior to using Lupron, I had 2 prior miscarriages and a successful pregnancy and my cycles always returned to normal pretty quickly.  So my thought is that this is something to do with the Lupron.  I will never take this medication again.

  • Melinda Muscat answered 2 years ago
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I took Lupron injections once a month for 7 months. My pain was completely gone but it was replaced with extreme hot flashes (despite add-back of progesterone), extreme anxiety, extreme brain fog and memory issues. I didn’t feel right so I stopped taking it. The brain fog never went away and it’s been 10 years.

  • Sarah Al-Hage answered 2 years ago
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I was on Lupron every day for three weeks in March 2021 for an IVF cycle. Not only did the cycle fail to produce any mature follicles, I have not once had a non-medication-induced menstrual cycle again. To add insult to injury, the endometriosis symptoms that have plagued me off and on for the previous 29 years suddenly flourished with a severe vengeance. I hate Lupron. And I hate everyone who keeps relentlessly pushing these harmful drugs on us to profit off of our agony.

  • Holly Goodwin answered 2 years ago
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Used for multiple years with no ad-back hormone replacement therapy. The only aid was in the flares of pain that occurred specifically at the onset of my menstrual cycle. All the 24/7 pain and severe flares of pain that occurred at other times of the month were completely unaffected on lupron, held and continues to worsen at full force. I now am angered knowing that despite endless physicians pushing this drug on me, endometriosis disease continued to spread despite my use of lupron. I know now that if I had not been given inaccurate info about the usefulness of lupron, I likely could have avoided bowel resection, multiple cycopexy, multiple rectal resection, extensive surgery on my ureters, the removal of my main abdominal peritoneum, appendix covered with endometriosis, bladder covered with endometriosis, hysterectomy to remove a “dead” womb killed off by spreading Endo, and even sexual assault at the hands of numerous hospital employees (I have learned the hard way that endometriosis patients make easy targets for predators because we are already considered dishonest, anxiety ridden “troublemakers” for asking for help with pelvic pain.) Makes me very angry to know that this was likely preventable if any one of those lupron-pushing docs had instead admitted that they weren’t properly qualified and suggested sending me to an expert endometriosis excision surgeon.

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I was on Lupron for eight months after my first surgery. My surgeon was an OBGYN—-not a specialist—-and he missed several spots of endo and took a good chunk of my bladder out. When I told him that my pain was worse after surgery, he called me crazy and said the only thing left to do was Lupron.

I took Lupron and was so suicidal my mom had to come home from work and watch me because she was that concerned about me. I was so depressed that I didn’t want to live. This was for several months. I also had a ton of issues with joint pain. My knees hurt so much and it felt like I was having growing pains again. I wish I never would have gone to a regular OBGYN for help.

  • Maria Rovito answered 2 years ago
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I took lupron 3- months depot shot after my second surgery. The side effects were horrible but manageable such as hot flashes, mood swings, irritable mood, insomnia, poor libido. But the worst side effects I had were hip stiffness. I couldn’t sit too long, or else I will not be able to control my lower limbs. I need to hold my hips to walk properly. The stiffness felt like my muscles were too tight. I had to go for pelvic floor therapy which only helped slightly. Once the 3 months was up, everything went back to normal after about 1-2 months.

Now, about 7 months later, I’m on the 3-months lupron depot again. The insomnia now is worse. I am so tired but I have difficulty falling asleep. I have frequent headaches which is not relieved by painkillers. Hot flashes, mood swings, hair fall. Tried to google the side effects but it’s quite limited to find actual experiences. I’m thankful for this page.

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I was being overdosed by Lupron ie 3 doses every 15 consecutive days!! My naive surgeon even planned to give me 10 doses which an excision specialist told me can lead to ovarian failure!!

After effects were horrendous!! Severe bone aches, ribs pain, fragile bones, hot flashes, brain fog, difficult decision making, upon seeing rheumatologist I was diagnosed with Lupus!!! Thanks to Lupron for spoiling my life

  • Ravinder kaur answered 2 years ago
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