My Experience with Lupron for Endometriosis

I’ve waited several weeks longer to post this than I really wanted, but I wanted to make sure I really had run the supposed gamut of the 3-month Lupron injection I received last November before I made my final review.

When I first went looking for information on Lupron, I found a lot of very old posts and notice board rants about how awful it was for treating infertility, and the horrible side effects. They were all based on results from between 2011 to 2013, at the latest, and they were all from women who were using it before invetro fertilization, and they were receiving injections much more often.

Since that time there were some reviews and the dosages changed and women weren’t allowed on it for as long or as much as originally recommended, because it was causing osteoporosis from calcium and bone loss. And for some reason, I couldn’t find very many current complaints with the search terms I was using.

The problem was, I was searching the wrong keywords because I hadn’t gone through the experience. It’s hard to find something if you don’t know what you’re looking for.

So when my doctor asked me to research Lupron, and gave me a pamphlet showing the side effects, I was thinking this is just like any other similar thing I’ve tried – and even compared it to Depot Provera, which had been previously quite successful for me, giving me glorious months of no pain until my bone density numbers got too low.

I had some concerns, and I asked my doctor about them. But he was leaning in the direction of, this is kind of the only option I have to get rid of the endometriosis and keep it from growing back. The pain I was living with seemed liked a nightmare, and the surgery hadn’t changed that, so I decided to try at least one injection.

Couldn’t hurt, right?

Unfortunately, it did hurt, and still hurts, very much.

Within a week of the injection, I suddenly had a severe migraine attack that had me in bed, unable to move my head or be in a brightly lit room for over a month. I could barely see, and the pain was so bad it had me nauseous and throwing up constantly. I lost 20 pounds without trying, and had to take a leave from work that I’m still on.

Symptoms from Lupron

Here is the collected list of symptoms I have personally experienced chronically since my Lupron injection:

  • Migraine headaches
  • Light sensitivity (sometimes extreme – almost blind)
  • High blood pressure
  • Nausea and vomitting
  • Inner ear and sinus pain and infection
  • Tinnitus and swimmer’s ear (liquid build-up)
  • Vertigo
  • Swollen glands
  • Flu-like symptoms (although no flu)
  • Extreme brain fog
  • Exhaustion and fatigue
  • Deep bone, muscle, and tissue pain
  • Shooting nerve pain down my arms, legs and back
  • Tingling extremities
  • Joint pain and weakness
  • Lower lumbar pain and stiffness
  • Falling over
  • Mini black outs (possible minor seizures)
  • Memory loss and forgetfullness
  • Bleeding and cramping
  • Pelvic pain

My blood tests revealed low D, high Calcium, and high ANA speckle as the main differences from before and after the Lupron, as well as abnormal hormone levels across the boards, which is to be expected after taking a hormone suppressant and add-back hormone.

It’s almost 6 months later and I still can’t get my life back.

I have since received an additional diagnosis of Hashimotos, where before I had just had hypothyroidism with occasional autoimmune flareups. An attempt at adjusting my thyroid medication did not help, and actually made things much worse.

The previous symptoms of fatigue I had connected with my endometriosis and hypothyroid used to only occur around my period and ovulation, so I had several days between when I did fairly well. Pelvic pain was something I had gotten used to and was just using pain killers to hold back during the rough times.

Now I can’t even touch my pain and suffering with pain killers. Any attempt at trying to medicate this has had disastrous results.

Symptoms Over Time

I can say that after about 4 months, things started to improve for a few hours a day. I originally couldn’t drive or go anywhere more than a short walk because doing anything would just make my blood pressure go up and my heart start to race. But after 4 months, I managed to be up and about a bit for a few hours a day and it gets better sporadically.

I still have very bad days when I can’t move or get out of bed, and when I do get up, I manage just a few hours before the pain become unbearable and I have to lie down again. This had me in a very depressed state and basically at rock bottom until a few weeks ago.

What’s saving me now is a lot of meditation, affirmations, taking time to heal as best I can, and realizing that I just can’t quite accomplish things the way I could before, but taking pride in the new accomplishments I make every day. I’m trying to appreciate what I do have to keep things positive, instead of focusing on the negative.

I’ve learned how to continue blogging and have even gotten more active on social media, things I thought I wouldn’t be able to do again since looking at computer screens hurts my eyes and makes me nauseous.

I’ve adjusted my habits to make myself more comfortable:

  • Being active in short bursts of an hour or so at a time
  • Changing my position hourly, i.e. sitting, standing, reclining
  • Stretching out my body between position changes
  • Sitting outside in the sun
  • Light activities like occasional cooking and getting the mail
  • Resting all day after going to the doctor
  • Taking short walks to get the mail or around the block every day

This helps me stay moving, even on days when I don’t do anything else. Usually if I do go out, go to the doctor, or do anything that pushes my limits, I have to rest for the remainder of the day. So I try moving every so often, stretching, and walking as ways to keep my body from just giving up.

Being able to do this has made me hopeful and helps me heal.

Raising Awareness for Endometriosis

I am now doing a clinical study for endometriosis which may or may not offer me help, but at least I know there is more awareness for it now. I appreciate being able to contribute that and see that in my lifetime.

When I was 14 years old, I remember visiting different ObGyns and naturopaths, chiros and pediatricians, and trying to figure out what was wrong with me and why I was in so much pain during my period.

Throughout my life I lived with ridicule and embarrassment at missing out on activities due to my pain. I was treated as a “drama queen,” like I was exaggerating everything.

From the time I first experienced symptoms at 12 years old, it took me 26 years to get an actual diagnosis. And even then, I had to go to three different ObGyns last year alone just to find someone who was willing to do the procedure to get me the diagnosis.

Do I wish we had a cure for this evil? Of course.

But we have to appreciate and have gratitude for how far we’ve come. And we have to keep pushing forward and spreading the word, and supporting those coming up with real solutions (it’s not always Big Pharma).

Should You Try Lupron

The blog post I read that convinced me that I should try it, said something along the lines of it being an individual decision. It recommended weighing your daily struggle and pain against the possible side effects of Lupron. I disagree.

Just because you are suffering with endometriosis, doesn’t mean you should take something that has the irreversible chance to make it worse.

And I realize for some, the suffering isn’t just the physical pain. You want a baby. So do I, and it has been killing me every day for over a decade. This emotional pain and the idea that this might be my last chance to birth my own child certainly made Lupron seem very attractive as a concept. I get that.

Try to have patience and keep looking. We’re going to find the answers. I’m going to try to help.

I hope and pray that you will take my warning and stay away from Lupron. I would even stay away from clinical trials if I were you, I’m only doing one because it truly can’t get worse at this point. If my trial makes things better, I will share that with you. Please, just don’t try Lupron for any reason at all.

There are reasons and answers for everything. We eventually made our way to discovering endometriosis and now we’re going to deal with it. It sucks. It hurts. But it’s not cancer and it’s not going to kill us.

Peace, love, and patience will take us through the times ahead.

Please Share Your Experiences

If you have tried Lupron, or if you have successfully treated endometriosis or the symptoms, I welcome and appreciate any comments you’d like to share with this community.

10 Replies on “My Experience with Lupron for Endometriosis

  1. The side effects of this drug seems worse than the condition. I really feel for you, you are obviously under a great deal of stress from this debilitating disease.

    I really believe that going down the pharmaceutical path is not the best way. This particular drug sounds horrendous and getting more problems over and above the symptoms you already have, seems ludicrous.

    I did check my ‘Nutritional Medicine’ book by Gaby, the old favourite Vitamin C seems to be the best supplement for this condition. Liposomal encapsulated technology (LET) vitamin C is the best on the market IMHO but it is very expensive, but you do get what you pay for in this instance.

    For those that haven’t the money to spare for it, you can make a simpler version of this technology at home. Not as good as the real thing but better than vitamin C powder or tablets which has the laxative effect in larger doses, unlike LET technology.

    I think improving your exercise and movement habits is a great advantage, not just for your condition but also for your general health. Keeping off gluten is also supposed to help endometriosis. Good luck to you.

    1. Hi, Ches. Thank you so much for your advice. I am working to maintain a gluten free diet to help. I hadn’t heard of vitamin c for this, but I will definitely look into that.

      1. Forgot to mention, don’t forget your magnesium. You are bound to be deficient in it and don’t take a calcium supplement, that can just exacerbate your problems. ReMag by Dr Carolyn Dean is the best out there but again, an expensive supplement. You can make up your own though see my article ‘what is magnesium chloride’ just search magnesiumandhealth dot com

        1. That’s great advice. I actually have too much calcium in my blood so I definitely don’t add to that anymore. Magnesium helps me balance it, and I also have a heavy vitamin D prescription that helps with that, too. Thanks for sharing your article with me!

  2. That is awful that you’re still experiencing negative side effects six months after just one injection. Is lupron supposed to cure endometriosis? Why is it still being used if there’s such a long list of negative side effects? It sounds like the side effects are far worse than the benefits for most people. Do you know if it’s been successful for other people in helping them to conceive?

    I wish you the best hun and pray that you can heal and have the baby you’re trying for!

    1. Thank you so much for your sweet words. I will definitely be writing more on the subject. Lupron was actually developed to treat prostate cancer in men and later was approved by the FDA for treating endometriosis. I assume it must help some people, but I have never read a story from someone who benefited from it other than to say they got pregnant – with massive side effects. I think it’s praying on women who really want a baby and have been trying to conceive for a long time. But I’d love to know if anyone out there HAS had success with it. I’m personally hoping by sharing my own experiences with this and paint the Internet with warnings for women to stay away from it. It’s one thing to cure cancer, it’s quite another for someone who has the potential to live out a relatively normal life. I know there are better ways to address endometriosis and infertility and we will get there someday. 

  3. I loved to read your story, I really felt your pain, I´m so sorry for your suffering. Thank you for the warning of Lupron I many sure this article, will help many people.
    Never give up your hope, and never stop praying either. You are very brave and a very strong person, this suffering will end soon, and we never know if they going to find a better medicine. Don´t give up. Best of Luck. Denise

    1. Hi, Denise. Thank you so much for reading and offering your kind words. I am definitely not going to give up hope. We’ve come a long way already. I wish the best of luck to you as well. 

  4. Hi Jaimie

    I really hope you will find what you are looking for as everything that you have gone through – well, I was reading and feeling it for you.
    A friend of mine had terrible pain during her period and no doctor could understand why. It was until the moment when she found one doctor who massaged her feet around the ankle by pressing certain points – and believe it or not – but it relieved the pain. Afterward, she actually learned to do it by herself and it really helped her.
    It happened abt 15 years ago and up to now she hasn’t been diagnosed but she has two kids and the pain has reduced after giving birth.
    I wish you all the best and I really cross my finger you fulfill all your wishes!

    1. Hi, Arta. Thanks so much for sharing the story about your friend. I have heard of certain pressure remedies for pain in the abdomen. I’ll see what else I can find out about that. Best to you as well. 

Leave a Reply

Your email address will not be published.*