A Year After Lupron Destroyed My Life

I’m sitting down at my computer to write for the first time in months.

It’s something I think about doing every single day, but there is always a reason I feel I can’t.

While some might relate to this, it’s not for the typical reasons one might think.

I have no lack of time – the entire year has just been one long sick-leave.

But the pain is unrelenting, constant, never-ending, and the more I let it throb and burn the more I crave relief from pain.

Relief from pain for me means partial relief along with mental brain fog, memory and focus problems, and often migraines – if that even makes sense.

Am I addicted to my pain relief? Probably.

It’s a hard balance learning to function and cope with daily pain, figuring out how and when to relieve the pain while trying to reach any sort of goals as a human being.

Although there are obvious physical markers, I am still treated as “non-urgent” with appointments weeks and months apart while I slowly go insane with restlessness waiting it out for special doctors and surgeons trained to handle my needs.

I definitely have endometriosis.

I definitely have something in contact with my spinal nerves.

I definitely have nodules in my thyroid that are growing ever so slightly each year and putting pressure on the nerves and glands around my neck.

But overall, those were things I was managing on my own with about 3-10 days off a month before my single 3-month injected dose of Lupron made my condition chronic and daily.

What I Knew Before I Took Lupron

  • It was a hormone suppressant drug originally approved by the FDA to treat prostate cancer in men, and now endometriosis in women. (This is how my doctor and many of the major medical websites described it.)
  • It would stop my period, but it is not a birth control and can lead to major birth defects in an unborn fetus.
  • It had an under 5% chance of a multitude of side effects, not unlike every other drug warning label on every other prescription I’ve ever been given.
  • The surgeon who had “saved my life” with an endometriosis diagnosis (blind faith) said it might shrink my endometriosis and cause it to fall out of my Fallopian tubes, unblocking them so that I might be able to conceive a child naturally. (All complete conjecture and essentially fantasy as endometriosis can’t just “fall out” and there is zero evidence this is what happens when Lupron is used.)
  • The effects of any side effects (mostly hot flashes, according to my doctor) would wear off in a few weeks – no need for time off work or anything – and it might even improve my ability to work by reducing my cramping.
  • A majority of the reported issues from Lupron (gotten through the pharmaceutical companies websites) are from the 1990s version that has since been “updated.”
  • I had taken Depo Prevera (a hormone suppressant birth control that is also injected) years before as a birth control and treatment for extreme period cramps and had experienced sever bone density loss, however it had all rebuilt itself and I had recovered from most of the worst side effects. (My doctor told me the side effects were similar and reversible, why wouldn’t I believe that?)

What I Wish I Had Known Before I Took Lupron

  • I would experience a migraine so bad it would have me in bed and throwing up daily for over a month.
  • My body would develop Hashimoto’s autoimmune, constantly fluctuating just slightly between Hypo and Hyperthyroidism with a myriad of accompanying symptoms including the most extreme deep tissue pain and chronic fatigue that keeps me from being able to be super active on most days. (Makes sense since the drug attacks the pituitary gland.)
  • Many of the symptoms would be lasting and permanent – so far a year and going strong with the nerve pain, cramps, hot flashes, insomnia, nausea, chronic fatigue and migraines.
  • I would lose my ability to work a traditional job due to episodes and flares of all my symptoms.
  • The pain and depression would lead me to want to end my life repeatedly, until I found other people through social media who are going through a similar rough time – holding hands and virtual hugs are highly therapeutic.

The Real Lupron Stories

When my doctor first recommended Lupron as the only possible solution to my endometriosis (lies), he told me to do my own research and let him know.

As I didn’t know what to search for, all my questions kept landing me on the pharmaceutical websites which have omitted information.

Had I seen the personal stories from thousands of women out there I might have avoided it, so I thought I’d share at least a handful of links to some of the real Lupron stories.

It would be a better idea, if you are considering this, to get on Facebook and join some of the Lupron groups and pages that thousands of other men and women contribute to.

If you are considering it for your endometriosis, at least do yourself a favor and read these first.

Bloomin’ Uterus – LUPRON DEPOT : MY EXPERIENCE

Endo Empowered – PLEASE Don’t Ever Take Lupron for Endometriosis

Natural Fertility Info – Lupron and Endometriosis – What You Need to Know

Lupron Isn’t An Effective Treatment for Endometriosis

What Am I Gonna Do Now?

At this point, I’m past worrying about the Lupron and what it has caused.

I’m learning to live my life at a slower pace and redesigning my dreams to accommodate my pain while I continue my therapy.

I know that getting spinal surgery and finding an expert who can excise my endometriosis is what I need to do.

Many women I’ve met online have found relief in endometrial excision, but there aren’t a lot of doctors who know how to do it correctly.

I recommend checking Nancy’s Nook on Facebook, as she has a list of recommended doctors who get good results in treatment of endometriosis.

There are none in my area, but I’m still looking.

Overall we need to keep being vocal about finding a proper solution and cure for endometriosis so we can end the suffering of 1 in 10 women.

10 Replies on “A Year After Lupron Destroyed My Life

  1. Hi Jaime, 

    Thanks so much for sharing such a personal experience. 

    I can’t imagine how tough the past year has been for you. Despite the pain that you have suffered, you have done a very honourable ting by taking action to raise awareness of the effect Lupron can have on people. Keep sharing and I wish you all the best in the future. 

    Cheers, 

    Shane

  2. Jaime- your long journey of pain and deception made me both sad and angry.  I’ve never heard of Lupron before…but I will never forget the name now after reading the monumental breakdown in quality care for you.  Frankly I was stunned by your experience with your doctor recommending that “you do your own research” on this treatment form.  How utterly disgusting and slimy – that a healthcare professional would send you down that road alone.

    I can only say that I’m sorry that you have had to sacrifice so much…and I hope that the treatments available that you look forward to will offer some relief and give you some sort of normalcy in your life.  Keep believing and and hang in there.  Positive thoughts to you friend!

  3. I just want to start out saying that I am so very sorry for all you are enduring with your pain.  That’s just terrible.  I have a dear friend who suffers from endometriosis (did I spell that right?) and it has been hell for her.  I was looking around the web for information for her, and I came upon your site.  I’m glad you are discussing this topic and the use on Lupron for relief so I can let her know not to take that if the doctor recommends it.  I really appreciate you putting this information together.  Thank you, and I hope things improve for you!

    1. I’m sorry to hear about your friend. Most people do know someone who suffers from endometriosis. She should definitely stay away from Lupron and do some research on excision surgery to avoid repeated surgeries. I had ablation surgery and it did not go well and did not get rid of the endometriosis. Thank you! 

  4. I had no idea what endometriosis is all about and was drawn to your article because of my wife’s problem that she has lately been suffering from. She has been found to have a thick endometrium which for the moment, we hope is nothing out of the ordinary thickening due to age, which seems to be something that more than 80% of women suffer from. My wife is 52 and fortunately, does not suffer any bleeding. Her period has stopped in the last year and she has no constant pain however, she experiences bloating quite frequently, which many times does lead to the point of slight pain. She has already done an ultrasound which has found her to have an endometrial stripe of 16mm, which is about double of the normal size, as we have been informed. She is currently at the stage of doing a second ultrasound to rule out any urinary infection and if necessary, she will undergo an endometrial scraping.I wish you the best of luck and hope that you can soon live a life without pain. Thank you for informing us about the subject and for the warning against the use of Lupron which I had never before heard of but will now be very aware of.

    1. Hello, Loannis. Wow, that issue with your wife sounds awful and very familiar. I’ve heard of similar issues and I hope hers does not get any worse and that the scraping helps. I know how that bloating and cramping can be, even without the bleeding. It’s rough being a girl these days so we need to watch out for each other and keep speaking out about how these conditions happen and what we can do to cure them. Thanks for stopping by my blog. 

  5. Hi Jaime,I know about endometriosis, but never heard about Lupron. I am an Histology Specialist and we usually speak about that. The most common treatments are hormone and surgery, the best is surgery, but it is elected when other treatment didn’t result.I checked Lupron on Internet and it has a lot of side effects, but with good results in treatment of endometriosis.I am so sorry to hear your story, I always search all drugs my family have to take and also the doctor that is going to see us. Always do this. I hope you will find the right doctor for you and be better soon.My best regards for you 🙂

    1. Hello, Maria. I appreciate your advice. It definitely is so important to research out medications and I’m glad to hear you take care of your family so well. I have found a good doctor for my pain relief, fingers crossed for a surgeon. 

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