Lupron Side Effects Survey

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Lupron Side Effects Survey
Hormones Matter is pleased to launch our fourth in the series of Real Women. Real Data Surveys: The Lupron Side Effects Survey.

About Lupron

Leuprolide, more commonly known as Lupron, is the GnRH agonist prescribed for endometriosis, uterine fibroids, cysts, undiagnosed pelvic pain, precocious puberty, during infertility treatments, and to treat some cancers. It induces a menopause like state stopping menstruation and ovulation. Its widespread use for pain-related female reproductive disorders such as endometriosis or fibroids is not well supported, with very few studies indicating its efficacy in either reducing pain or in diagnosing endometriosis or other pelvic pain conditions. Conversely, reports of safety issues are mounting, especially within the patient communities. Class-action and mis-marketing lawsuits have arisen. Still, Lupron continues to be prescribed regularly to diagnose or treat pelvic pain disorders, generating over $700 million in revenue in 2010 and 2011, even though few studies have been conducted to support its continued use.

Purpose of the Lupron Side Effects Survey

Women and physicians need credible, non-industry sponsored data about the safety and efficacy of common medications. The Lupron Side Effects study was designed to determine the range, rate and severity of side-effects and adverse events associated with Lupron use in women.

Who Should Take the Lupron Side Effects Survey

Any woman who has used or is using Lupron for any reason. We are not currently collecting data on the adverse reactions for men and boys, but intend to launch a separate survey to tackle that population.

How Long Does the Survey Take?

The Lupron Side Effects Survey should take no more than 15 minutes.

How Will the Data be Used?

To inform future research and women’s health decision-making.

Is the Survey Anonymous and Secure?

Yes. We do not collect personal identifying information and the survey is hosted with SSL encryption using a verisign certificate Version 3, 128 bit encryption.

Who is Conducting this Research?

Researchers from Lucine Health Sciences and Hormones Matter. For more information on Lucine, click here. For more information about Hormones Matter, click here.

What Can I Do To Help?

Our organization is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. Get involved and help us prove that hormones matter and that women’s health data matter. Become an advocate, spread the word about our site, our research and our mission. Join our team. Write for us, partner with us, help us grow.

To take the Lupron Side Effects Survey, click here.

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.

Thank you in advance for your help.

 

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19 Comments

  1. I also was receiving zoladex injections in stomach for fibriod tumor inside uterus I received 2 shots after second I stated having side affect pulling around neck restless shaky dizzy weak blood pressure shot up collester went up high as well I also have 3kids never had a miscarriage until 11 months after stop taking it I became pregnant lost my baby at 7weeks

  2. Toronto’s SICK KIDS HOSPITAL FIRST LINE OF TREATMENT FOR TEEN GIRLS WITH GENDER CONFUSION or DYSPHORIA – LUPRON!! I’d like to share that in Canada I just had the experience of taking my 14 year old biological daughter to Sick Kids Gender Clinic because they have been identifying as a trans boy for the past 2 years – it started after puberty and some rapid and major body changes. I was told by every expert that the clinic would be the place to take my daughter and it would be a long process of assessing if they were indeed a candidate for further transitioning beyond just superficially presenting themselves as a stereotypical “boy”. I was given the impression they would do major psychological assessing as there are a lot of social/political factors involved beyond “I don’t like my body” in this case. They feel the world is a rough place for a woman for many reasons, but especially when it comes to a future sex life. It’s all very complicated. But the doctor attempted to sell the lupron option in the first appointment, saying it would “end all that discomfort you must have every month” and make testosterone easier to tolerate and quicker to take effect” if and when they wanted to make permanent changes. I am shell shocked. This drug is not even approved for this use, at least not that I’m aware of. This is an otherwise healthy and beautiful body. And a pretty bright mind as well, if not filled with general teen angst and gender confusion. Lupron is apparently about to be approved as a free drug under a new plan for people here under 25. You can bet once it’s free that kids will be convincing their parents to go for it! This teen gender clinic has a wait list of many months and the waiting room is packed. There’s an explosion of a trans youth movement here in Toronto – but this is the first and really the only path the “experts” are offering to help these kids, and with very little consultation. How can a drug even get approved under these circumstances? How can we protect our children if the doctors are peddling it as “safe and risk free” – not even giving a complete list of the side effects I’ve read about on any general and unbiased website?

  3. Ended up here after hearing that movi ended up here after hearing the links between hpv shot and hypothyroidism. My 17 yo daughter now has hypothyroidism. She also has no periods and cysts. Additionall she has vittaligo which is an autoimmune issue. I had full course of Lupron depot shot in 96-97 and I have hypothyroidism among other issues.

  4. I was put on Lupron for 18 months at the age of 16. It never did anything to stop the progression of the endo. After more than 10 surgeries, I’ve now had a completely hysterectomy with bilateral oophorectomy. The list of problems I now have on top of still having endo is revolting. I wish I had more education on the drug and the disease back then. Lupron is not some cure all miracle drug. It’s not even worth the risk of one of the many different side effects it can have on your body especially given the fact that it didn’t bring anything positive to my life. Do you know what’s worse than struggling with an invisible disease that no one understands but yet redefines your life? I’m guessing using a “treatment” that causes all sorts of very real problems which are also invisible and almost impossible to prove ranks high on that list. I know you’re probably scared, frustrated, and even desperate at this point to control this plague called endo in your life, but please consider this choice carefully. It’s not what you’re praying it will be. I’m so sorry for anyone out there who’s struggling right now. Feel free to email me if I can help in anyway. jacqui_durant@hotmail.com

  5. My doctor offered me the opportunity to take Lupron after my hysteroscopy and laparoscopy (not a hysterectomy). Due to the side effects, I wanted it to be the option of last resort. Thankfully, my doctor prescribed Danazol to me. It’s a little older and definitely doesn’t have the marketing dollars behind it, but the effectiveness should be the same, according to my doctor. It’s a pill that I take twice a day. My side effects have been mild compared to what I would have experienced with the Lupron.

    My heart goes out to you that have suffered because of the Lupron. I’ve had my fair share of horrible side effects from drugs and I know how much it can change your life.

    You can find some basic information on Danazol here: http://www.mayoclinic.com/health/drug-information/DR601775 (there are more options on the left hand tab).

    I’d be happy to discuss my experience with Danazol if anyone else is on it or has questions about it.

    Again, I’m really sorry to those who have suffered from Lupron.

    1. I just had a full Hesterectomy and I just had another surgery removing my ovaries. I was just given lupron.
      Does endometriosis stop because I removed my uterus and ovaries? Please advise

      Thank you?? Need your input?? Please reply

      1. No, I am afraid endometriosis does not stop with hysterectomy. We have an entire archive of endometriosis articles as well as lupron articles. Please read through them and reach out to the authors of the articles.

      2. I had a complete hysterectomy. Overies, flopian tubes, uterus and cervix. They sewed my vagina up at the end and my endometriosis ended, but you get scar tissue that feels like endo sometimes. I’m glad it fixed me but I am a victim of lupron. I didn’t take hormones after my hysterectomy. The lupron was before the complete hysterectomy, 2 shots, permanent damage!

        1. Kellie I was wondering what kind of permanente damage did you have with the lupron? I’ve had 5 shots and I’m suffering again. I only have my ovaries left and I’m thinking about removing them bacauwe of the pain. I’m so confused I don’t know what to do.

    2. Hi Heather,Can you inbox me your results from taking Danazol? My doctor is highly recommending me to take the Lupron injections ASAP. I have read the side effects & feedback from several on this site & it frightens me.
      Please help

      Thankyou

  6. Nancy,
    Oh my goodness! That is a ton of Lupron to have during that 21 day period! I had 11.5 every 3 months! I have stage 3 endometriosis. I have had four shots, so now I cannot have anymore. I am 28 and I refuse it now because of the bones. I feel for you! That is terrible! I’m sorry Lupron did this to you! I personally hated it myself. Too many hot flashes that felt like I was near the sun. My temperature was at a near constant 100 every single day because I was so unbelievably hot. It did work, but the side effects were so terrible!
    I have had two endometriosis lap surgeries to burn it off. I went for my third and my gynecologist took out my right ovary. It was terrible and scarred. I feel much better now and am not having any problems.
    Have you tried the constant birth control so you don’t have a period? Lupron truly doesn’t change your life. I thought it would as well. I told my gynecologist about my side effects and now she is cautious about giving it out.
    I truly hope things get better for you! I am disabled right now, but have to go back to work no matter what for my bills. I was denied twice by SSD. I now just have to deal with it.

  7. To whom it may concern, My life has been completely destroyed due to the injections of Lupron I received over 14 years ago. I received 21 mg. of Lupron every 21 days for 9 months. I was told that all the “side effects” would go away after I stopped the Lupron. obviously I can not tell my story in this amount of space but I need to help other women before their lives are ruined due to this horrific drug and the horrible doctors who continue to use this drug as a “cure” for endo. Just to let you know YES that is the correct amount of mg. I received every 21 days. I was given shots of combined doses to equal the 21 mgs. and I was told I needed it every 21 days instead of the protocol of 28 days because the endo was still present after a complete adm. hysterectomy and removal of ovaries and tubes and cervix. Please send me information on how I can submit my story in order to help other women not make the mistake I did in believing that Lupron would change my life it did change my life because now I am completely disabled and have a long long list of medical problems and diseases I never had before I was injected with this terrible terrible toxic drug. No doctor can reverse the damage that has been done to me the drug company is still being allowed to manufacture this drug doctors are still giving this drug IT HAS TO STOP. I will be willing to help in any way I can. I will be awaiting your response on how exactly I can be of the most help Thank you, Sincerely, Nancy Hayes.

    1. Can’t believe I am reading this article. Took Lupron many years ago for stage 4 endometriosis. I now have Multiple Sclerosis. Always thought it so odd that I got that. Have niece who yook the meds for HPV and she has hypothyroidism and hashimotos. Not surprised. Quite startling just the same.

      1. Kenya, Have you seen a doctor who can treat your endometriosis surgically? These medication options too often have terrible (and sometimes permanent) side effects, and the endo symptoms will come back once you stop taking the medication. You might consider getting a second opinion before trying Lupron or Danazol.

        1. Hello Dr. Philippa Bridge-Cook,
          Yes ma’am…I just had surgery on the 12th & he said i had Endometriosis everywhere & he is suggesting i get the Lupron injections, his nurse has contacted a pharmacy. He said it would help slow the growth of Endometriosis prior to getting Invitro. He is a fertility Specialist.After reading the comments here & side effects i am having second thoughts about it.

          1. Hi Kenya,

            It sounds like you may need greater surgical expertise. If you see a surgeon who can remove all the endo (and those do exist), you won’t need to consider taking Lupron. I know that thinking about more surgery is probably the last thing you want to hear about right now! If you are on Facebook check out Nancy’s Nook (https://www.facebook.com/groups/418136991574617/) or Endometropolis (https://www.facebook.com/groups/endometropolis/?ref=group_browse_new). Both have great resources for finding a surgeon who has a lot of experience dealing with severe endo. In some cases removal of all of the endo will allow for natural conception–if you join either of those FB groups I mentioned you will hear lots of stories of women who conceived after excision of endometriosis. (I am one of those women as well).

            Philippa

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