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 England
How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – a friend recommended me.
What is your current age, height, weight? I’m 41, 5"5 and weigh
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Leuprorelin or leuprolide acetate (prostap)
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Monthly injection, but some were three monthly given as monthly by mistake. My husband and I seen the nurse mixing the vials. If it was a one monthly injection (7.5mg), that comes prepared in a syringe however, the 3 monthly injection(22.5mg) had to mix the suspension powder to time release the dosage through the 3 months.
What condition was being treated with the drug? Endometriosis
For how long did you take the drug (weeks/months/years)?
How old were you, and WHEN (date) did you start the drug? I was 36 and had my first injection October 2015
How old were you when you quit, and WHEN (date) did you quit?
I didn’t quit, I was asking questions about my health, why my legs buckled and generally feeling ill, so the gyneacologist discharged me via email to my GP who then informed me May 2016.
How did you quit (cold turkey or taper off)?
Just stopped them suddenly.
How long into your usage did you notice the onset of side effects?
Id say between injection 2&3 things started to get painful.
What side effects did you experience that have yet to resolve since discontinuation?
I’m now disabled
Bone pain through out while body every day called arthralgia.
Causes suicidal thoughts.
Collapsing legs buckling
Narcolepsy type symptoms falling asleep while eating or in the middle of a conversation.
Swelling in body
Losing muscle mass
Dramatic weight loss
Stuttering and stammering words
Visual tremors throughout body
Dramatic weight gain
Problems with depth perception
Jumping, jerking and shaking
Tingling in arms and legs
All above are still all under investigation
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.
Loss of Libido / Sex Drive✔
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility
Emotional Blunting / Emotionally Flat✔
Difficulty Focusing / Concentrating
Memory Loss / Forgetfulness✔
Stumbling over Words / Losing Train of Thought✔
Slurring of Speech✔
Lack of Motivation / Feeling Passive / Complacency✔
Extreme Anxiety / Panic Attacks✔
Severe Depression / Melancholy✔
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Gynecomastia (male breasts)
Dry / Dark Circles under eyes✔
Persistent Fatigue / Exhaustion✔
Stomach Pains / Digestion Problems✔
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness✔
Tinnitus (ringing or high pitched sound in ears)
Increased hair loss✔
Lowered body temperature✔
Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Nothing, no cure just gets worse.
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)?
Anything not listed in the above questions you’d like to share about your experience?
Stuttering, ticks, full body jumps, and jerking shaking which looks like Parkinsons disease or M.S
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug
This is my story and its so similar to 44,000 others worldwide so far.
Hello my name is Cheryl, let me tell you my story.
It begins in 2015 I was having pains in my abdomen which were similar to the endometriosis pain I had experienced before.
As anyone would do I went to my doctor, she referred me to a specialist, which bought me joy as I thought finally I was going to get the help I needed.
Little to my knowledge my life was about to change irrevocably.
The day came for my appointment with the specialist and I had been in so much pain leading up to the appointment so I was optimistic as to how the doctor was going to help me.
I was sat in the waiting area with my husband and my daughter, my name was called we got up and made our way to the consultation room. Little did I know these were the last minutes my life were ever going to be normal.
I preceded to tell the doctor that I believed my endo had returned and informed the doctor what I had been experiencing and the daily struggles I was having with the pain, she decided without any tests to start treatment for something she had not even confirmed was there!! It could have been anything!!
She informed me of a drug called PROSTAP, this magical medicine would get rid of the endo and put me into a chemically induced menopause. She informed me I might put on some weight and have some hot flushes, but she forgot to mention all of the other side effects.
I looked at my husband and we made the decision to go ahead with the treatment.
We were fools, we should have taken our time and researched the drug but we were under the belief that doctors were there to help us not harm us.
I had my first injection and to be honest for the first few weeks I actually felt like I had my life back.
Then it was time for the second injection, so we returned to the hospital, went into the little room and had the injection, then a few days later it began….
I was holding my daughter in my arms having a cuddle and a giggle when suddenly my legs collapsed from underneath me!!
Luckily I was near the sofa and my husband was there to help catch my daughter. The whole incident shook me to my core.
I was confused, scared and had a thousand questions. Then more and more little things started happening each day; pain in my arms and legs, severe fatigue, pain all over my body.
Whar was it? Was it illness? Was it the medicine? My husband and I decided we would ask the doctor at the next appointment.
Injection number three…We arrived at the hospital and I was in agony. I was called in and we sat down with the doctor and proceeded to inform her of the recent occurrences. She just brushed it off and would not give an answer to our questions. I was then sent to the little room for my third injection. This I believe was the tipping point for my body.
After this injection my body went downhill fast, I was experiencing intense pain on a daily basis, I could barely walk, I was having memory problems, lapses in concentration and the scariest one was suddenly falling asleep for no reason while I was eating!! This one properly scared me. Myself and my husband were starting to really believe that the medicine was doing this to me.
Jump ahead to injection five… We had been battling with the doctor telling her in each appointment that the medicine was poisoning ME, but she was having none of it! They even mixed up one of my injections and had what we later found out given me the wrong dosage. The doctor decided to put me on H.R.T tablets. She wrote the prescription, but to our shock when we went to get the tablets she had not even put a dosage on, so we had to go our GP, who had to guess what dosage I should be on. So I started the tablets. What a waste of time that was as they did nothing at all to ease the symptoms.
Injection six… by this point I was nothing like my original self. I was longing for the days of just having endo.
It was agony, but I knew for sure what was causing it. This was on a whole other level. My body was not mine anymore, it felt as if I was no longer in control of my own body. I had developed a form of stutter, I was experiencing visual problems, my short term memory was completely shot. We told the doctor of all of this, yet still she wanted none of it, so yet again I went for another injection.
By this point my body was past the point of no return.
Injection seven, the final one… At this point we knew without a shadow of a doubt the medicine was the catalyst to what had happened to my body.
I had been poisoned, my body would never be the same again. We went into the appointment with the doctor adamant she would listen this time.
We told her everything again and told her we knew the drug was poisoning me. She looked scared that we knew what was going on.
Somehow she managed to get me to have this injection, then a few days later to my shock I was informed that I had been discharged by her so no more treatment, no answers, no help!!!
She knew what she had done to me, I knew what she had done to me, now she was running and hiding from what she had done!!
I went back to my GP to get answers. She was shocked as to what had happened, so she wrote a letter to the specialist. No reply was ever given.
The GP then proceeded to tell me with all my symptoms that I was diagnosed with M.E and Fibro and chronic fatigue syndrome which was a devastating blow.
I had never had anything along these lines until I started taking PROSTAP, so the drug had definitely caused this and I still had my endo which had not been treated.
I was left devasted, I did not want to live like this. What had become of me? What was next for me? Would I be able to go on?
I spent the next six months in agony, barely even able to move from my bed. My life was virtually over and I was looking for ways to end my life. I felt as if the pain was too much, that I was a burden to my husband and my children, I felt it was unfair to them that I was so ill. With the help of my husband I started to see that I was not a burden, that he would never leave me and that we would fight together to get answers to why this had been done to me.
In late 2017 I created the support group Lupron Victims and the support Group M.E and Invisible Illness Worldwide. These groups were a way to help me cope with what had happened to me and a way to help other people from being harmed by this drug.
I also moved from where I was living in Coventry to Yorkshire which bought me a new lease of life, even though I had developed a lot more new symptoms. One scary one in particular is uncontrollable shaking.
The groups took a little bit of time to take off but slowly more and more members started to join and the numbers increase every day.
Through this time myself and my husband devoted our time to getting answers and information, which we have amassed a plethora of shocking information on PROSTAP i.e. LUPRON.
We discovered this drug has been poisoning women worldwide since the 80’s. I have managed to help some ladies by stopping them from taking the drug and hopefully saved their lives. Some women would not listen and now have the same symptoms as me and wish they had listened!!
I tell you my story as a warning, as a guide, to help others from being poisoned by this toxic chemical.
I tell my story not for sympathy or for profit.
I tell my story to make sure others will survive and to bring strength to others who have been poisoned.
Only if we come together and shout loud enough will we save women from this poison. We may not win the war against these companies but we can win battles and save some lives along the way.
This is not the end of my story, this is just the beginning. With tests and treatment maybe one day I will get some of my life back – maybe not all, but some.
Please read this story and inform anyone you know who maybe fighting Endo, to be aware that doctors may not always have your best interests at heart…maybe just maybe money might just be more important to them!!
This is not the end; this is just another chapter of my life.
My symptoms: (yes these are the symptoms you can expect from PROSTAP/LUPRON)
Bone pain throughout the whole body
Collapsing legs buckling
Narcolepsy type symptoms
Swelling over the whole body
Loss of muscle mass
Dramatic weight gain/loss
Stuttering and Stammering words
Visual tremors throughout the whole body
Tingling in arms and legs that don’t go away.
This is serious. These are not just ‘side effects’. They are life-long irreversible changes that will not go away.