The fallout from Lupron, 22 years out

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? United States, specifically Kansas. I grew up in Missouri, where I received my treatment.

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Lupron Victims Hub links

What is your current age, height, weight? 39, 5’2” about 158 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Lupron, 2 6 month sessions between October of 1998 and Summer 2000. I’ve also been on Depo Provera (about 5 years in all), citalopram (4 or 5 years at least), fluoxetine (3 years), and am currently taking sertraline for severe anxiety. Lupron is the main issue I’m posting though.

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? For Lupron, 1 monthly shot for 6 months, with a break period in between 6 month sessions.

What condition was being treated with the drug? Severe endometriosis, diagnosed by laparoscopic surgery in October 1998.

For how long did you take the drug (weeks/months/years)? 1 year in total.

How old were you, and WHEN (date) did you start the drug? I had just turned 18, and I started in October of 1998.

How old were you when you quit, and WHEN (date) did you quit? Probably 19 or 20. Both times were cold turkey, the shots were monthly and those were the only options I was given.

How did you quit (cold turkey or taper off)?
Cold turkey.

How long into your usage did you notice the onset of side effects?
The depression and anger were evident after just a couple months. I’ve been finding side effects for years.

What side effects did you experience that have yet to resolve since discontinuation?
Depression and anxiety, memory loss, extreme dental issues (I have been averaging 1 to 2 teeth removed a year, which is the more affordable option…), chronic fatigue, mental fog and a lot of mixing up words, very short attention span.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
[x Memory Loss / Forgetfulness
[x Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[x Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[ x Severe Depression / Melancholy
[ x] Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity
[x Weight Gain
Gynecomastia (male
[x Muscle Wastage
[x Muscle Weakness
[x Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
[x Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
[x Frequent urination
[x ] Lowered body temperature

Other (please explain)
My gall bladder failed in 2000 and was functioning at 17%. I did not know there was any correlation with Lupron until 2010, and even though I’d been on Lupron, the doctor who did my surgery found more endometrial tissue growing where they’d already performed laser removal.
My teeth started falling apart as early as 2001/2002, and even though I asked my dentist if there were ways to use preventative measures or stop the bone loss issues, he treated me like I was the main problem, which has been a continuing cycle over the past 2 decades with various dentists.

I underwent a 90 day high dose Vitamin D supplement treatment in 2008 which helped, and I haven’t had that issue since.

In 2003, I had my right ovary removed due to extreme pain from endometriosis. This was followed in 2016, after a period that lasted from November 2015 until mid-January 2016, with a complete hysterectomy since my uterus was not considered viable, and there were fears I might have developed cancer.

And within that 20 year period I have developed extreme anxiety that has manifested in several ways. I have also never really gotten back to being physical after my gall bladder surgery and other endometriosis surgeries in the period between 98 and 2003.
I feel lucky that I didn’t have an extreme weight gain, but I also had horrible IBS and various digestive issues that were most likely a result of the endometriosis and Lupron and Depo-Provera as well.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Intense psychotherapy, various calcium supplements prescribed by my doctor at the time to help fight bone loss, various birth controls and antidepressants to cope with physical and mental trauma.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
I haven’t really had any blood tests for hormonal changes as such. I tried various dosages of estradiol since my hysterectomy, and they caused more adverse effects. On my last annual exam my doctor told me I could stop using them.

Anything not listed in the above questions you’d like to share about your experience?

It’s been absolute agony carrying all this baggage around all these years. The process of dealing with endometriosis is horrendous, and to be put in a position where you’re presented with ONE way to get relief, and that’s it, is abject cruelty. I feel like I’ve gone through some kind of a medical garbage disposal over the years, trying to recount every procedure accurately, then explaining all of the sob story ridiculousness of life after Lupron. The results are always the same, my doctors either have never heard of the drug or they blow me off, or give a tired sigh, and say oh well that’s too bad, have you done research?
And don’t even get me started on the effect all of this has had on my personal life and goals after high school. I was a different person before all of this, and when I look back, I don’t even remember who she is…

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

While Lupron gave me a much-needed respite from the pain that had already ravaged my body for 6.5 years, it shortened my fuse, and turned me into a different person. I was angry and depressed, and to make matters worse, I was also going through menopause (first time of 3) during my senior year of high school. That was absolutely not good planning.
At first, the mood swings were really the only issue, and the after effects were so far removed that I honestly didn’t connect a lot of them.

Thank you for giving me a place to share my story. Please let me know if there are any questions, I appreciate it!!

Sara

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What a disgusting thing for a dentist to blame you for something another medical professional did to you.

Was recently informed one of my sisters had Lupron pushed on her for endometriosis and she turned it down. She had already had issues with a birth control that was prescribed to her for endo. My family is basically a huge wreck caused by pharmaceuticals and medical malpractice. The other sister… a pharmacist who had to have her gallbladder removed within a month of being put on Yaz . Anyways…

There’s no immediate benefit from it other than contributing toward defining Lupron’s long-term side effects, but we have a Post-Drug Syndrome Survey and it would be appreciated if you could add to the data. This will be used to promote and guide research in the future, with the intent of eventually finding treatments.

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