Lupron Victims please participate in survey

@Marlena454, thanks for attempting the survey.

Unfortunately, the survey was not designed for mobile phones. You could try desktop view on your phone, or better yet, use a desktop/laptop.

If you could, encourage other Lupron victims to participate. We know there are many of you out there who have been badly damaged by Lupron and other GnRHa drugs, but as a group, we don’t hear much from you.

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I tried to complete the survey on a computer and the reason it would not let me complete the survey is because I dont know what kind of Lupron Injections I got and can’t remember the dates all I remember is in 2015 and I was 39 y/o. My Pre Op History & Physical says this. Pre operative diagnosis chronic pelvic pain and interstitial cystitis pelvic floor myalgia. Past medical history gastric ulcer constipation chronic pelvic pain in female cyst kidney disease. History 39 year old female with a long-standing history of chronic pelvic pain underwent cysto/hydro in 3/2015 and diagnosed with interstitial cystitis. Was taking a course of Lupron this year but stopped after three injections because she was intolerant of the side effects. That is all my records says about Lupron. My records does not give me the dose or anyting and like so many others Doctors don’t listen I had told my doctor about the side effects that I was starting to have after getting Lupron injections and he does not believe it has anything to do with Lupron when yes it does my medical history is in my records and it shows what my problems was. Back to the survey I had a bad doctor that didn’t want to find out why I was having pains where the pain was coming from instead wanted to keep feeding me muscle relaxers and steroids for pain in my legs and for the weakness in my legs now I have a new doctor and I’m going on the 17th of October at 10:30 to get a bone test done and I was diagnose me with disorder of musculoskeletal system For once I have a good Doctor that listens and wants to find out what the problem is. The survey was design far people that can give dates they was diagnosed, test results Lupron injection dos I can’t give that right now Lupron injection dos is not even in my medical record and because I can’t put the stuff on the survey I’m not allowed to take survey that’s messed up it seems like the survey is just like the doctor’s that so many of us Lupron victims are having trouble with. Doctor say it’s not because of the Lupron well the survey is being one-sided just as the doctors are being one-sided that’s not fair to any of us

Just put in the details that you remember to the best of your ability. Be as precise as you can - if you can’t be exact, it’s ok.

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I tried but because I dont have dates and doses of Lupron injections test results that was the end of the survey it would not let me go to next page I was able 2 use the comment box not really sure if they got it or not but that was all I could do was comment box and hit submit and then that was it that was the end of the survey that was the end it didn’t move on because I didn’t have dates and stuff to put in to the blanks

I’ve just noticed that you have been entered into the “completionist” group - your survey has been received. Don’t worry about the survey now, thankyou for filling it out. Any data that is missing will be eclipsed by that which is present.

Thankyou for filling out the survey!

Yes! It is meant to be filled out to the best of one’s recollection. @Marlena454, Don’t worry if the dates or dosage weren’t exact.

Thank you for participating, @Marlena454!

@Dubya_B has made an important point. Are you in any way in contact with others who suffer from persistent side effects from Lupron and similar substances? If you are, please encourage them to take our survey. We need as much data as we can get!

Ok I guess it dont matter. I just feel like my survey is crap cause of the doctor I had not listening to me and I can’t remember a lot of stuff

I don’t know anyone that received Lupron injections but I’m sure the OBGYN offices full of them cuz he kept wanting me to get them so I know he’s handing them out to other women and it’s sad

Hello! Trying to follow up for a link for the survey in regards to Lupron and it’s side effects?

I go by Tedi. 24, female, was prescribed Lupron as the 3month injection for treatment of endometriosis. The goal was to put my body into menopause to decrease estrogen production, hopefully stopping progression and killing the disease present. While symptoms of Endometriosis have displelled enough for pregnancy to result, the side effects of Lupron have not made it any more fun.

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Hi. I want to participate

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Hi - I would like to participate in the survey.

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@Trdrum, @Marissar93 and @arix: Many thanks for joining this site and a warm welcome to all of you. I have enabled your accounts to take the survey now. By the time you read this, you should have received an email with a personalized link to take the survey (please check your spam folder). If it didn’t arrive, you may also participate by clicking on the graph icon at the top of the page.

We need at least 20 responses to be able to present the GnRH analog (Lupron, etc.) data separately, the way we currently do for finasteride, anti-depressants and isotretinoin (anti-acne drug Accutane etc.). If all of you fill it out we’ll have 5, so another 15 to go. Please encourage anyone you know who is also suffering from GnRHa inflicted health damage to participate. We need to get this problem more visible, and we are working hard to push scientific investigation of these syndromes.

Even though you will probably find that many of the issues discussed here will sound very familiar, please feel free to create topics specific to the subjects you are interested in having a conversation about. Thanks in advance for your support in this crucial matter.

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@Trdrum, thank you for doing the survey! It’s highly appreciated!

@Marissar93 and @arix, when you find the time, please participate in our survey! We would be thrilled to have the Lupron community on board with a substantial participation in line with the Finasteride, anti-depressant and Isotretinoin (Accutane) communities.

Have a good start to 2020!

I don’t know if I have done this yet or not! Lol I’m sorry I just don’t remember and I want to make sure that I help in anyway possible. I signed up and will look for an email with a link to the Survey.

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Hey @Jebfrog, thanks for signing up.

Take a look here:

Have you signed up to take the post drug syndrome survey? This topic is for you

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Cool. Remember to post about your experience in the Member Story category first. Then, the survey will be made available to your shortly after.

The survey results can be viewed here:

You can scroll around the charts in the different topics to view different aspects of the data.

Hi,

I am here looking to help all the victims that have taken Lupron. I started talking Lupron in 1999 when I was just 18 years old for endometriosis. I am now 39, have been through countless surgeries, a hysterectomy and 50+ doses of Lupron. God I wish I knew then what I know know! It has ruined my life! It never managed my endo properly and just ended up making me more sick by the year. My list of ailments is insane. Even while I had endo, I was in the military and in the best shape of my life. I continued to stay in great shape until about 2014 when my body just couldn’t keep up anymore. I was fighting continued fatigue, migraines and fibromyalgia. I had to stop working completely. I filled for 100% disability at the age of 34 years old. I have osteoarthritis in my pelvis and hips, and am now fighting liver and kidney issues I just had 2 surgeries in the last month and a half. I feel like I am fighting a never ending battle that should have never been. I feel absolutely betrayed. And the absolute worst thing is even after a total hysterectomy I still have endometriosis. So to those who read through the internet vetting medications before taking them, please, please don’t do it! Thank you for listening.

Jenn

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What happened to this thread. Awor and Axolotl were working on the right thing. Where these two guys have gone?

We are currently working on publishing the survey data collected in a scientific journal. We should have updates about this in the coming weeks.

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