lupron side effects Archives - Page 3 of 3

Severe Depression and Suicide Attempt with Lupron: My Story

Published on March 27, 2017

12638 views

I am now 30 year old mother of three very beautiful children. I had suffered for years with irregular menstrual bleeding, horrible lower pelvic pain, cysts, polyps, and HEAVY bleeding. (You’ve heard of Niagara Falls, right?) And so, I spent a lot of time in and out of doctors offices, and the emergency room. All for nothing. The doctors would look at me like I was crazy. I know that their assumption was probably something along the lines of, “She’s just coming in here for pain medication!” When in fact: I never took pain medication. It makes me ill. Finally, I came to live in a small town where the number of doctors were limited. The doctors here think they’re God’s gift to earth. They aren’t!

From the Pill to Lupron: Is This the Best We Can Do?

Step1: I meet this sweet doctor, she does her exam, she recommends a low hormone birth control pill to help get my cycles back on track (Standard procedure) I can accept that! After weeks of trying, my bleeding was not improving and neither was my pain.

Step 2: Go back to the sweet doctor to look at other options, get offered the IUD and decline. Get offered another form of birth control. Decline. End up with another birth control pill.

Step 3: Call the doctor’s office freaking out because I have just passed, what I thought to be miscarriage. And “how can this be possible, my tubes are tied”, per the docs request I took the “thing” to the laboratory for pathology.

Step 4: Doctor calls the next day “It’s not a baby, it is endometrial tissue. Come in to talk about options.” and so, we talk and she decides that our next option is to go into surgery. She wants to go in through my vagina, remove polyps, tissue, whatever nasty things are up there. And then, she wants to do a D&C to really make sure it is all good and clean. So, we do!

Step 5: Nothing has really changed after that surgery. I go back to the ER in excruciating pain. They run a few tests, then call my OBGYN, the doctor comes back into the room and says. “I talked to your doctor and she says that there is no reason you should still be having pain down there. And that you need to go see the general surgeon.” meanwhile, I am crying hysterically! “Are they right? Is this all in my head? Am I crazy?”

Step 6: I go to see the General Surgeon. This doctor sends me to have some liver, kidney, gallbladder test. Clear. He schedules me for a Colonoscopy. Clear. He says he can’t help me.

Step 7: I go back to my OBGYN. Tell her I am still in a lot of pain, I have not stopped bleeding for over a month, and I need something else. I have already had my children, my tubes were tied, I just wanted the pain to go away and so I asked my doctor for a hysterectomy. She said she wasn’t ready to go that far yet and that she had another option… And enters Lupron!!!

Lupron, Lupron, Lupron! Oh, How I Loathe Thee!

Here I am this 29 year old woman, with three kids, an inability to be their mother because I’m always in pain. I’m tired and feel awful from constantly bleeding. Then someone you trust offers you this sort of “quick fix” to all of your woes. HELL YEAH! Two shots in 6 months and my life is going to be so much better. Boy oh Boy was I wrong. I get my first dose of the “golden nectar” and I am ecstatic! That is, until the symptoms started to kick in.

My mood changed drastically. I suddenly couldn’t control my emotions. I couldn’t control my temper, I couldn’t control ANYTHING! I was living at my mother-in-law’s house with my husband and kids. Tensions were high. Spaces were tight. And God love her, her and I could have killed each other I think! (No worries, we get along great now.) And then came the depression. I have battled it my entire life, but this was different. This was a whole new level of low. My husband and I were fighting constantly and, rightfully so, I was not an easy person to get along with. We weren’t speaking and barely existing at this point.

Suicide Attempt

July 4th 2016, I came home with my children and put them all to bed. I stood in my kitchen thinking about my life. I started to cry harder than I ever had before. And I lost it. I lost my mind. I opened my medicine cabinet and I swallowed a bottle of pills. I sat on my floor and sobbed for what was only a few minutes but seemed like an eternity. I thought of my children coming out of their rooms and finding their mother dead on the floor. I ran to the kitchen sink, stuck my fingers down my throat and threw them all up. I asked myself “what the hell is wrong with you!?” and then I realized that this depression and the suicide attempt were possible side effects of this drug. Other women who have taken this drug have experienced the same thing.

I see my doctor again to get my second dose and don’t mention that I tried to harm myself, only that I have thoughts of harming myself and that I am very depressed.

I am now having hot flashes (or the gate of hell flashes), night sweats, fatigue, headaches.

“Those are just side effects, they will go away in the end” she says.

I got a medicine to give my body a bit of hormones and try to help balance me out. Meanwhile, I am still bleeding fairly heavily and in some pain.

When Lupron was “Over”

Isn’t that hilarious! “When Lupron was over! It will NEVER be over!

It has been 7-8 months since my last shot. I still suffer with short term memory loss. I have the hardest time remembering the smallest things. Conversations, what I’m getting at the grocery store, who I’ve told what. It’s awful. My bones hurt so badly. I have a hard time running after my children because of this awful pain in my legs. My hands throb, my shoulders ache, and even my toes hurt. I can’t control my pee anymore. I actually peed myself at work. I know, embarrassing right? I have a migraine every other day and I have gained a ton of weight. I’m always thirsty, I can never get enough water. And my vision is getting worse. I hope and pray that all of this is temporary and that one day soon I will get my sense of normalcy back. But, the truth is, every other woman that I’ve talked with about Lupron and the side effects that they have has experienced the same thing. I will deal with this for the rest of my life. It sucks! I am trying to stay positive. My husband and I, we’re doing great. My kids are healthy and happy. And I will not let this beat me.

God Bless and I hope this helps someone.

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Lupron: A Different Kind of Suffering

by Connie Diamond Scroggs

Published on April 26, 2016

13095 views

I had other plans for my future. I never imagined I would become disabled from a pharmaceutical drug that I trusted my doctor to recommend: the poison that is Lupron. I took this medication as my doctor recommended for my endometriosis, but little did I know when I took that second shot that I would be rushed to the doctor with tachycardia and that my life as I knew it would change forever. Never again would I enjoy hiking, bicycling, swimming, and travel. Even long walks would eventually become a challenge.

Before Lupron, I was a different person. I worked full-time as an executive assistant. I hiked, biked, went dancing, did all my housework, loved to cook, read and write poetry and short stories. I enjoyed life, in other words. Before Lupron, I was organized, out-going, engaging in events and life. Watch commercials for popular fibromyalgia medicine and it describes me how I am now, just replace fibro with Lupron. I can’t engage in any of the activities I used to love. My husband took early retirement to enjoy life with me and I’ve been too sick to travel or even just take a walk in the park.

The initial shock (there is no other word for it) my body was thrown into after the first Lupron shot was horrid! I had such violent hot flashes that I would end up in the E.R. with what I was told was a “panic attack” and that I was okay, and all tests were normal! What about the fact that I felt like I was literally dying, with every side effect listed in the literature (which is staggering) for Lupron and could only manage to concentrate well enough to read about a month after I took that last shot? The first time I sat in front of a computer and read The Lupron Victims Network, I knew I had made a tragic mistake and my heart sank. Since that day, I have become an avid researcher, trying to find some way to get my life back, chasing my tail around the information highway to be disappointed time after time.

The next six months were spent trying to muster enough energy to buy groceries, have a life, enjoy my life. One of the most alarming things was the fact that I couldn’t think: I couldn’t put a sentence together in my head. My husband would ask me a question and my answer would be “I don’t know” and I really didn’t know, even simple everyday things! Such poverty of thought put me into a depression I could not explain to myself, let alone to doctors. The anxiety was horrible.

I felt a little better when my body starting making estrogen again, but then came the pain, especially in my legs. Xanax and ibuprofen were my only friends, and I took lots of them, to take the edge off the pain. I was nervous to take other medications, as I was scared of medicines in a way that was unhealthy. Every medicine I tried either made me feel worse or I had strange, sensitive reactions to it, something that still happens today.

All this happened in the fall of 1997, one day after my 41st birthday. I will be 60 this year and have been sick THAT long. There were periods of time when I managed fairly well with a handful of pills, massage and other gentle modalities. The popular water exercise everyone recommends–water aerobics–provided little to no relief. After a year and a half, I gave it up and hurt LESS.

Then, I had a surprise. I was 46 and almost fainted at home one day. I went to the doctor and found out that I was pregnant for the first time! We were shocked and elated until I went into withdrawal from muscle relaxers, tranquilizers, and other pills that I was taking to help manage pain, anxiety, and all the other symptoms. Five days later, I miscarried my baby at 3 months pregnant. We were traumatized. I blamed the doctor, Lupron and big pharma.

I found out later I had a prolapsed uterus from taking Lupron, and two years after the miscarriage, I had a hysterectomy. I kept my ovaries thinking I would be thrown back into Lupron hell if I shocked my body again. Since then, I have had more problems from my teeth, to my back, to my thyroid, to dry eyes; there is always something going on in the saga of my unwellness. And, my official diagnosis is fibromyalgia! You guessed it by now, when everything is wrong, let’s not insult her by calling her a hypochondriac. Although they might as well, since it is just as hard to be taken seriously and respected, and since I HAVE a diagnosis, why look for anything else, unless of course it will make money for everyone.

My faith in the medical establishment is extremely crippled. I am surprised if a doctor believes me when I tell him Lupron made me permanently ill. There have been a few, and I mean FEW– and I have seen numerous doctors of various specialties, sometimes traveling hundreds of miles, to no avail.

I have to accept that this is now my life. I have neuro/endocrine/immune system dysregulation brought on by a poison that I willingly agreed to, having no idea what would happen as a result. Of this I am sure. Period. Nothing you can say, show me, or otherwise do will convince me that I am wrong, misled, or uninformed. I am living the sadness, and sometimes overwhelming life of chronic illness imposed upon me by the poison that is Lupron.

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Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction

by Center for Endometriosis Care

Published on April 28, 2015

6750 views

Lupron or Leuprolide is prescribed regularly for endometriosis, fibroids and undiagnosable pelvic pain. The evidence supporting its use is sketchy at best. Perhaps the most troubling practice is the use of Lupron to ‘diagnose’ endometriosis, an indication for which there is little evidence.

Can Lupron Response Indicate Endometriosis?

According to a report by the Practice Committee for Reproductive Medicine, No.

“The gonadotropin-releasing hormone (GnRH) agonist Lupron has been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of one study involving 95 women with moderate to severe chronic pelvic pain unrelated to menstruation. In this study, participants were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause.”

What the research found, belies the utility and subsequent marketing of using Lupron to diagnose endometriosis. Pain relief in response to Lupron was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). That means, even by the company’s own research the response to Lupron did not and could not accurately diagnose the endometriosis.

Do I Really Need Laparoscopy to Diagnose Endometriosis?

“My doctor said that if I get better on Lupron it means that I have endometriosis. He said I might as well take Lupron now and not wait for the laparoscopy.” In other words, is the currently popular practice of using a GnRH agonist (e.g. Lupron) as a treatment for endometriosis without doing a laparoscopy first warranted? No, it is not and here’s why.

Lupron pre-laparoscopy has become common practice since the publication of a study by the drug’s manufacturer (no bias there) several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, if pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand how hormones, pain, endometriosis and Lupron interact leads to an incorrect diagnosis in at least 25% of cases. In addition, many forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

Is Laparoscopy the Only Way to Diagnose Endometriosis?

Yes. Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and can be relied upon to diagnose endometriosis accurately. Moreover, medical therapy, like Lupron should not be used as evidence of a diagnosis. Medical therapy has never ‘cured the disease’. Medical therapies like Lupron are used merely to temporarily suppress some of the symptoms associated with endometriosis; it is neither long-lasting nor wholly effective, and it is not without serious side-effects.

Are all Laparoscopic Techniques the Same?

No. You will need to find an expert in laparscopic excision for endometriosis. Meticulous laparoscopic excision (LAPEX), has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 years. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.].

Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. For that, Lupron is most certainly not indicated.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health, Lucine Health Sciences and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE. The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff. We continue our efforts as architects of the legacy in gold standard endometriosis care.

From Lupron to Fibromyalgia, Hashimoto’s, Pericardial Effusion and More

by Kerri

Published on August 29, 2013

7169 views

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.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

I’m a Lupron Teen

by Sydney Grady

Published on August 28, 2013

2611 views

My name is Sydney and I am 18 years old. I was diagnosed with Endometriosis in 2011 at the age of 16. After much trial and error with medications to treat my Endo I turned to the Lupron shot with Add-back therapy, which means every three months I go and get a shot into my back side and everyday I take a pill called Norethindrone.

My first Lupron shot was nerve racking. I left the hospital in a wheelchair because I was feeling faint after the huge needle was placed in my butt. I started feeling weird side effects, like hot flashes, dryness, night sweats; you know, normal things all teenage girls go through during menopause. The only woman I knew who had ever gone through menopause was my grandma, so I talked to her. I bought an organic hot flash spray, and I opened the window at night.

I was really upset and depressed when all this was happening, but I was open about it. I talked about it with everyone; my mom, boyfriend, even my dad. I explained to everyone that I needed support and kindness during this time. I asked them to be patient with me as this was difficult for me to handle. They were so good about it, the most supportive they have ever been. Soon my side-effects subsided and it was time for my next shot, which went much smoother. No wheelchair and fewer side-effects and still lots of support !

After my third shot I was given a bone density test to make sure I could still get the shot without it effecting my bones (another side effect) and I passed ! I have now been on the shot for over a year and I am so satisfied. My pain is so well controlled and I experience minimal side effects. Lupron is hard at first. It takes time for your body to adjust. It’s not right for everyone but it seems to be working for me.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

You Cannot Do This to Us Anymore! Lupron Does Not Work

by Jill Fuersich

Published on August 28, 2013

4995 views

My Lupron Endometriosis Nightmare

It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room. As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.

I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.

The Lupron Journey Begins – How Bad Can it Be?

Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”

The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.

Maybe Lupron Does Work

I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.

Maybe Not – Lupron Hell

It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds. For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze. I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.

I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.

Long Term Side Effects of Lupron

I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.

Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.

From Patient to Patient Advocate: The Birth of Endo Warriors

I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.

I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”

What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.

Information about Endo Warriors

If you are battling endometriosis and would like support from other Endo Warriors please contact us:

Email- endowarriors@gmail.com

Facebook- https://www.facebook.com/pages/Endo-Warriors/496001373757588?ref=hl

Twitter- @endowarriors and @jillybean126

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

Angela’s Lupron Story

by Angela Wice

Published on August 28, 2013

4886 views

In June 2006 a 10cm endometrioma was found on my ultrasound. I researched as much as I could about endometriosis as I was told it was a possibility that I had it. I was sent to my local Gyno and she told me she wanted to put me on Lupron and that nothing could be done even if I had Endo. I refused. I didn’t want to be put on a medication if it wasn’t proven that I had endometriosis. To me, that was really stupid on the doctor’s part. I did my research. I knew it was used for endometriosis, but unless I was diagnosed, I was NOT going on Lupron.

I searched high and low and thanks to the worldwide web I found two specialists in Toronto for endometriosis, so I had my doctor send the referral over. He found the recto-vaginal cyst by rectal and vaginal exam that had been missed for 14 years. I was happy that finally they had found something. I knew it wasn’t all in my head for these many years. He sent me to his protégé.

Post Surgery Lupron

I was on the operating table three months later in June 2007. After my surgery I was out of it. The surgeon supposedly talked to me but I was not coherent at the time so his intern was told to come in. I was told that Lupron was the best medication for the severity of the disease I had and she gave me a prescription. I felt like I had to take it. I just had surgery and she was telling me it was the best option and at the time. The specialist, the Gyno and the GP all told me that “Lupron suppresses endometriosis.”

From June to September 2007, I took the monthly injections and I remember the first month feeling somewhat okay. I guess I put most of the blame for the side effects on my recent surgery. After two months, depression started to kick in and a major fibromyalgia flare as well. My bones and joints were so sore. My muscles ached like crazy and that was with the Add-back therapy. I would get sharp pains to the pelvis that would leave me breathless. On the plus side, no period. After three months I went back on my regular birth control pill, Marvelon. The transition went well.

Lupron Again and Again

In June 2008 I was told to go on Lupron again. I must have been a glutton for punishment because I did, for another three months of monthly injections without the Add-back therapy. My mood was extremely out of control. I was angry and agitated. The Lupron injection was causing insomnia. My moods were all over the place and the pain intense, however, there was no bleeding or Endo pain. After this, I went right back on Marvelon.

In 2011 I went back and forth from the Endo specialist who did my surgery and pain management clinic. I contracted PID. I felt that there was major damage from the PID plus Endo. The original surgeon said there was fluid in the cul-de-sac and told me I had to go on Lupron again. He said if the pain and fluid went away it was Endo and he would operate and if it didn’t, it wasn’t Endo.

So in October 2011, I had one injection that lasted for three months without the Add-back therapy, per his request. I didn’t want to, but the pain was too much to take, so I did it anyways. Well, this was the worst experience yet because even if I wanted off of Lupron after a month, I couldn’t because it was a 3 month injection. I was screwed. The first month was okay, but then I became extremely depressed, no sex drive, chronic headaches, nausea, no ambition, and insomnia.

I went back after three months. He didn’t do an ultrasound and because my pain wasn’t gone he said it wasn’t Endo; it was neuropathic pain syndrome. Oh Lord. He really pissed me off. So back to the pain management clinic to be a guinea pig for another year before she would agree to operate.

In February of 2013 I had surgery again and Endo WAS found.

What I Learned

Lupron did not suppress my endometriosis. The doctors either did not know this or prescribed it anyway. I realized after my first injection, that the medical staff at the clinics also did not know how to use Lupron. They had to read the instructions on the box, and even then, would prepare the injection wrong. The instructions clearly say “DON’T SHAKE.” It is supposed to be mixed by rocking it back and forth slowly and gently. I noticed that when they mixed it improperly, the Lupron side-effects came on much more quickly and much stronger than when they mixed it properly. I don’t know if this is coincidence or not.

If I had known what I know now about Endo and Lupron after speaking to Dr. Redwine, I would never have taken this medication to begin with. Nothing suppresses Endo, no medication, no diets etc. If it is not all excised, it will continue to grow, period. I went through years of hell because the doctors did not know what they were doing. Please don’t make the same mistake I did.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

Lupron and Endometriosis

by Jordan Davidson

Published on July 31, 2013

7455 views

Leuprolide, more commonly known as Lupron, is promoted within the gynecological field as one of the best options for treating endometriosis. Lupron is also used for men with prostate cancer and children going through precocious puberty. Endometriosis is a secondary autoimmune disease where the lining of the uterus (the endometrium) grows outside of the uterus, breaking down and bleeding in conjunction with a woman’s regular menstrual cycle. The displaced endometrium, having no way of leaving the body causes scarring, cysts, internal bleeding, chronic pain and infertility. There is currently no cure for endometriosis. Current treatments include laproscopic surgery, oral contraceptives, partial or complete hysterectomy and GnRH agonists such as Lupron.

What is Lupron?

Lupron in a GnRH agonist which puts the female into a chemically induced state of menopause and is often associated with serious side-effects. According to Dr. David Redwine, a gynecologist with over 30 years of experience treating endometriosis, “The state of menopause with Lupron is very unnatural, not only because it is chemically induced with medicines, but because FSH levels are not elevated as they are in normal menopause. Lupron temporarily stops menstruation but does nothing to eradicate endometriosis from the woman’s body.” What Lupron does do is suppress the body’s pituitary-gonadal system potentially causing an onslaught of endocrine, neural and immune side-effects.

Side Effects

While this list is not all inclusive, it does however, include many of the more commonly reported side effects of Lupron:

fatigue
hot flashes
depression
insomnia
joint pain
decreased bone density
loss of sex drive
vaginal dryness
loss of appetite
weight gain
nausea
changes in bowel patterns
acne
facial hair growth
increased body hair growth
breakthrough bleeding
dizziness
night sweats
chills
muscle pain
overall feeling of physical weakness
stomach pain
constipation
diarrhea
vaginal itching and/or discharge
breast swelling or tenderness
memory problems
changes in urinary control
skin redness and itching
headaches
blurred vision
diabetes
convulsions
hair loss
anemia
fibromyalgia like symptoms
hyperglycemia
ECG changes

The Lupron and Endometriosis Connection

Given the general lack of knowledge and sparsity of endometriosis specialists – it almost makes sense that a drug that stops menstruation and induces a hormonal standstill, would be effective in treating endometriosis – almost. However, Lupron does not cure endometriosis nor does it effectively treat endometriosis. What it does cause is a host of painful side effects which can last long after the drug’s maximum 6 month dosage.

As a co-founder of Endo Warriors, a support group for women with endometriosis, I have spoken to countless women with endometriosis who have been prescribed Lupron for their endometriosis. Of these women, I have never heard one say that taking Lupron either helped their symptoms or provided any decreased endometriosis progression. Instead I have heard several stories of women developing thyroid disease, women experiencing hot flashes and breakthrough bleeding as painful as if they were menstruating, women in their late twenties coming off Lupron with bone densities resembling those of women in their late sixties, and stories of developing fibromyalgia and chronic fatigue.

Despite the adverse consequences of Lupron being known within the Lupron-prescribed portion of the endometriosis community, the dissemination of that knowledge generally stops there. In fact, there are plenty of websites that describe endometriosis as a common and treatable reproductive disease – going on to cite Lupron as not only an effective but an optimal treatment. While endometriosis is indeed common, with 176 million sufferers worldwide, it is not easily treatable. And unfortunately, none of those 176 million women will see a cure until some honest dialogue take places regarding the challenges in treating endometriosis and credible evidence regarding the safety and efficacy of Lupron and other prescribed treatments for endometriosis is available.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health, Lucine and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

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