My name is Kerri. I was diagnosed with Stage IV Endometriosis when I was 27 years old. I am here to share my story about Lupron so that hopefully someone else does not have to go through what I have gone through and what I am still going through.
I suffered through years of horrifically painful periods when I was in high school. My cramps were often so bad that I would be crawling around on the floor every month. I would develop fevers from the inflammation and the pain. I started getting sick a lot. I was dismissed by almost every doctor I went to. I just consistently heard, “You are young, don’t worry about it, “or “You are just stressed out.” But I know my body and I knew something was wrong. My hormonal fluctuations were also a nightmare. I suffered waves of depression and extreme irritability. It was not until I was rushed to the hospital for pancreatitis that my doctor noticed a deformity in my uterus through a CAT Scan. I decided to see a new gynecologist and he immediately sent me for a pelvic ultrasound. I had cysts everywhere. After my first laparoscopy, I was diagnosed with Stage IV Bilateral Endometriosis. All the visible endometriosis was removed along with the cysts.
I continued to be proactive and go for regular pelvic ultrasounds. Unfortunately, the cysts and endometriosis progressed rapidly. My doctor said I was the most progressive case he had ever seen. I then went on to see a Reproductive Endocrinologist. He did an in-office ultrasound on one of my visits and told me I needed immediate surgery. After surgery, I was told that the endometriosis had spread rapidly to my entire pelvic region as well as my kidney, my liver, my bladder, and my intestines. He said to me, “We are going to start you on Lupron. Your case is too progressive. This is your only hope.” I was also told I would never be able to have a child of my own.
I went home and researched Lupron myself. There was nothing, but horror stories about it online. I was especially concerned with the alarming amount of fibromyalgia diagnoses’ after use of Lupron. I addressed my concerns to my doctor. He reassured me by saying, “You can’t believe everything you read on the Internet. This is a good drug.” I decided to trust in my doctor, even though my gut instinct was telling me not to take this drug. However, I was living a life of pain and wanted desperately to get my life back.
I received my first dose of Lupron through injection August of 2007. I was told that my only side effect would be hot flashes. I never got a hot flash from Lupron. Instead, I experienced crippling fatigue and involuntary muscle twitches and facial tics. At the end of the month I still got my period. Lupron is supposed to suppress your period. I called my doctor and told him. He did not seem concerned. Therefore, in September I received my second Lupron injection. My fatigue and muscle twitches increased and I, again, got my period at the end of the month. My third and final shot of Lupron was administered in October. I remember being at work and saying to my co-workers, “I don’t feel right. Something is not right.” Every muscle in my body ached and my joints were hurting. I could not bend my fingers. I put a call into my doctor. I was not able to reach him, but spoke with the Nurse Practitioner. I told her what my symptoms were and she just told me, “That is not from Lupron.” She seemed annoyed that I kept asking questions. I had to call out sick to work the next day because my entire body hurt. It took me a week of calling everyday to even get the doctor on the phone and the only answer I did get from him was, “You must have a virus. Go see your regular doctor.”
I went to see my regular doctor. I told him my situation. He went home and researched Lupron on a website that he used for his own practice. He called me personally and said, “I don’t know why your doctor told you that this drug doesn’t cause fibromyalgia because it does.” I will forever regret deleting that voicemail message by accident. Needless to say, my reproductive endocrinologist never saw me again. I, also, have not been able to work full time since October of 2007. My life was forever changed.
I was sent to a rheumatologist and was diagnosed with fibromyalgia. I was bed ridden for six months. I went from walking 2 miles a day to not being able to go up and down the stairs without pain. All of my muscles felt like I had spent the day lifting weights when I had actually been in bed all day. I ached from my head to my toes. I had to resign from my job teaching children with Autism. It was too physical and I could no longer handle it. My entire world had been turned upside down. I was offered Lyrica for my fibromyalgia, but after my experience with Lupron I was terrified to try it. My immune system crashed and in the following months I was diagnosed with thyroid disease, fluid around my heart, Epstein Barr virus, vitamin deficiencies, and food allergies. In addition, the Lupron did nothing for my endometriosis. It was still growing and spreading.
In February 2013 my bladder shut down and I was completely catheterized. The belief was that the adhesions, scar tissue and cysts were causing the bladder problems. Therefore, in April of 2103, I underwent a full hysterectomy. My bladder, unfortunately, is still not operating on its own and I have also been diagnosed with a neurogenic bladder. This is concerning because I was born with only one kidney and a neurogenic bladder is one of the main causes of kidney failure. My urologist believes I may be a candidate for a bladder pacemaker which may or may not even work.
It has now been six years since I took Lupron and I still experience all the side effects from it. It is my opinion that this drug shut my immune system down and led to all of my other health problems. I have done so much research and numerous women are experiencing the same side effect. This NEEDS to stop! I struggle everyday with the memory of the life I used to lead. It is a sad realization when your life stops, but the rest of the world keeps living. It sounds silly, but I would love to go back to the days where endometriosis was my only health concern. I have tried my best to become my own health advocate and it pains me to say that I have lost faith in those doctors who treat on a universal level, rather than a case by case basis. It is my hope that my story can help spread awareness and maybe help someone else out in the end.
There is not a day that goes my where I wish that I didn’t listen to my gut instinct that day. I have lost my career, my health, my finances, and most of my friends in the process. I have been humbled by this and never take good moments for granted. I would love a day of no pain. I have to believe that if I keep fighting, there will be some light at the end of this very long, grueling journey. I hope the universe will allow me the opportunity to pay it forward.
To learn more about Kerri’s health struggles, click here.
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Thank you for your story, I’m sad that there aren’t a million replies because I know there’s more suffering the after affects of Lupron. I took six shots of Lupron in 1991.
Thanks to today’s knowledge of hormone therapy, vitamin/mineralogy IV fusion therapy, genetic testing. Trigger point massage therapy. Eating all organic, removing inflammatory foods such as gluten and making as many healthy choices as I can, I am finally getting my pain down and life back. It’s been a long tough road.
Hello ladies I too have been suffering the effects due to the Lupro injections I had been getting them for 2 years after receiving 5 iron transfusions due to endometriosis and 2 growing cysts. As well as 2 blood transfusions, I did not want a hysterectomy. Now I have hair loss, muscle and bone loss, weight gain and fibromyalgia. I am tired and exhausted all the time my quality of life has gone down due to the drug. I s there a class action lawsuit against the manufactures of this bad drug.
Lily, have you gone and had autoimmune disorders ruled out? I was on Lupron (monthly injections) in 2000 for 5 months before I couldn’t take it any longer. First I was diagnosed with fibromyalgia, but I *knew* something else was going on. Since I was young (20) nearly every specialist said it was *just* fibro, until a doctor did comprehensive blood panels and I ended up being diagnosed with Systemic Lupus (which happens to be a sister to Endo and often masked by a fibro diagnosis).
Please make sure they rule out everything! Have your ANA levels checked (Anti Nuclear Antibodies). Because it might NOT just be fibro at this point.
Im sorry for what you are going through. It’s been 7 years since I took Lupron and I still have every single side effect.
I wish every single day that I never took that drug.
i have been dealing with endo since i was 17, im 34 now. This year my ob suggested the wonderful Lupron shot. I was on it for 9 months. from the first shot about 3 weeks after i started to get the horrid side effects. A common side effect is sore muscle and joint pain. I got that and thought it was just side effects. It has been almost 5 months since i have been off the shots and my bone/joint pain is so horrible i can not get out of bed in the mornings and can marley get my daughter to school. i am in horrible shape and pain from my joints. I went to the drs today and we have almost ruled out everything. He is pretty sure it is fibromialgia, i never had a joint/bone or muscle ache, until i was injected with this POISON.
Thank you so much for posting your story. I am sorry that this happened. My doctor is currently pushing Lupron at me. I am too scared to try it, and after reading this I definitely will not. My doctor seems frustrated that I won’t try it, but I just don’t feel like it’s my only option.
Good luck to you.
Thank you for your story. I’m so sorry you have a story like this to tell but if is wasn’t for people like you I would have allowed my doc to push lupron into my system. I already have fibro so the lupron would have made it worse. God bless you in your time of need.
I am so sorry to hear this! Is there a known combat against this? My wife had lupron for endo and within the past 2 years, her health has rendered her disabled. She has had a handful of serious diagnosis the last few years, she gets severe bodily swelling constantly. The doctors can’t find a cause, but I think lupron caused this! Nobody should ever have to go through any of this because they trusted a dr I administer this evil drug!
Ken, while the chance you’ll see this is minimal…I wanted to say I was on Lupron for my Stage III endometriosis in 2000. Five shots, five months. My life has never been the same. First Endometriosis, then fibromyalgia starting during Lupron treatment, and within a year – a Systemic Lupus diagnosis – a few years later? Multiple Sclerosis, and they’re keeping an eye out for yet another autoimmune disease (which is even scarier).
I wish I’d NEVER heard of Lupron or ever taken the shots!!!
Thanks for reading it. I hope it helps someone avoid the nightmare I am going through. Unfortunately,there are limited options out there. I truly hope with more awareness and funding, that will change.
Thanks for posting Kerri! I had my first Lupron in July and refuse to get another one because the first one isn’t doing anything for me. I just have to find another avenue to help me get through this.
I have never been offered that route but it could be something I look into. Thank you! I hope your daughter is doing better and thanks for reading my story 🙂
Thanks for posting this article, Kerri – it seems the medical industry has it out for women! We suffer at their hands daily.. Have you considered getting Basic IV Therapy? Our daughter was vaccine injured 6 years ago, so the IV has been a god-send for rebuilding her immune system. Many people with a multitude of immune system disorders are trying this therapy. Just a thought, but may be worth a try. Blessings!