SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); side pain (2); tired; problems with mobility due to the groin pain; problem with finding a comfortable way to sleep because of the groin pain.
As far as I can tell, I have cycled off Lupron. In the past week, I have had no headaches, maybe one hot flash. Except for being tired and the familiar pain, I'm back to what life was before I started the shots. I'm thankful that cycling off has not been bad considering what so many others went through.
I wish everyone else well on their journey with Lupron. I know it has the capacity to help some people, though I was not one of them. I hope the chronology of my own treatment can serve as a benchmark, regardless of the success of your treatment.
That being said, if you are a classical singer, I would never recommend this treatment to you. You are at great risk of changing your voice and the downtime is severe. It was nearly impossible to perform and my entire voice shifted more than by fach and category. I'm still waiting to see what the long term effects are vocally. Again, I specify that this warning would be for classical singers. MT/Broadway, pop, etc use mikes and would not be as affected.
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5 comments:
Thanks for sharing your journey with us.
I think I stand for many people when I say that you have been a real inspiration to us as well as giving us an insight into your daily struggle to find a way forward.
You are a fighter with a determination to succeed that we could all learn from.
The best of luck for the future.
Amandab (UK)
Thank you for sharing with us! I wish your journey had gone better. I'm so glad that things are cycling off nicely, and, that you are able to find relief soon. I also hope that there aren't any long lingering affects on your vocals-hope that side effects goes away quickly!!
Best of luck to you. I'm sorry the treatment didn't help your situation.
Hey, I came across your blog while doing some endo research. I have endo also, was in horrible horrible pain (all the time, not only during periods), had 2 laparoscopies to burn off the endo, had it on my bladder, bowel, pelvic wall, and still had terrible pain so I was about to start Lupron. But after reading more about Lupron I really didn't like the sound of the possible side effects and it only helps for a few months in some cases. I came across studies about endo and nutrition though, that discussed the relationship particularly between endo and wheat. Some women are also affected by dairy. I took myself off of dairy and wheat in February, instead of starting the Lupron shots. It took about 3 weeks to get out of my system but after that, as long as I don't eat wheat/dairy (wheat is the worst), the pain is very minimal and I haven't had to do Lupron or anything else since then. It's actually been amazing. If you haven't looked into the nutritional side yet, order Dian Shepperson Mills' book "Endometriosis: A Key to Healing and Fertility through Nutrition." I had to order mine through Amazon marketplace and get it from a bookseller in England, but so worth it. Apparently the diet helps about 80% of women. Try it for 2 months at least if you haven't yet! Good luck!!!
Rachel, Thanks so much for this comment. I had just been doing research about the very same thing trying to understand my body better.
There are some foods that act like estrogen and/or have inflammation effects on the body. This is particularly important if you are viewing endo as an immuno response illness.
I always assumed because my food choices were largely organic and vegetarian, that I was already making the right choices. But then I ran across an article that also suggested avoiding foods with refined sugar and flour, trans fats, hormones and pesticides, as well as gluten, dairy, eggs, corn and yeast. (Dr. Mark Hyman wrote a book about it too).
A little depressing when I think about the foods I love and how hard it is to cut out some of these things.
I also read that hormones have a way of masking the way we feel. As the estrogen begins to diminish, we begin to be more susceptible to what's really going on with our bodies.
So I am going to try really hard to detox off of these foods. I have to admit, during Passover when corn and yeast are not allowed, I do feel better. I'll let you know what I find out. Even if I give up some foods, it's much better than the chronic pain I am still feeling.
Thanks for sharing your experience, Rachel! Glad to know it worked for someone.
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