SIDE EFFECTS FOR THIS DAY: headaches (pain rating 2); left groin pain (pain rating 4); pain on sides (2); lower back pain (3); lower ab muscles weak; hot flashes/night sweats; weakness and extremely tired; reduced mobility; problems with sleep; lack of focus.
I noticed looking at last month around two weeks after the first shot there was a reprieve and I am wondering if I am in the same cycle. Today was pretty decent comparatively. Just wondering if the bad stuff will come back.
What I do know, though I thought it was diminishing, the groin pain has not gone. That was the whole reason I did this shot... as a diagnostic. I was told by a surgeon in Miami that I would have my answer after the flare. If the groin pain was because of the endometriosis that I have, the Lupron would make it go away. If it didn't, there is something else causing the problem.
My OBGYN thought it could be adenomyosis on top of the endometriosis.
Where do I go from here?
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6 comments:
Hello, I pray you are having a good day today. I have been reading your post everyday. I am having the same problems as you. I have been diagnosed with endo,because of my symptoms and I had a lap done and my doc said from the softness of my uterus and the way it did not bounce back when touched, she was certain I had ando as well. I have been in unbearable pain for over a year now. I have been through so many tests to try and determine what is actually the source of my pain. It has finally came down to two options. Lupron, which I am terrified with. I have heard nothing but horror stories from people that have been on it, and my sister was also on it, and she almost lost her mind. On top of that gained almost 40 pounds. My second option is to have a total hysterectomy. I will be 30 this July and my doc is worried about my age. But she is willing to go this route because of the misery I have been in, and it being the only "true" cure. She two wanted to use Lurpon as a diagnostic tool, but it would take 6 months to determine if was helping and having to deal with all the horrible symptoms seems not worth it to me. I am also a mother of 4, and not being able to be there for my kids terrifies me. I have a son(10) who is diabetic and on insulin and has a strict diet and has to be taken care of 24/7, and a son(8) who has chronic asthma, who is on breathing treatments twice daily and on an emergency inhaler if needed and he needs me as well. My daughter(13) is very well:), this being said, she is very active, very busy personal life, involved in many church activities, youth camp, and volleyball. I have to be there for her. I'm the taxi. My oldest(15) is quiet and more reserved. He is a good kid, but needs me to watch over him. Then there is my husband, an excellent man! I love him dearly and he has been there for me through the whole thing. He works non-stop for us. Up many nights working his primary job and then 2-3 jobs on the side to make us extra $. (Again 4 Kids:-) Being so busy, it would be hard on him if I am down all the time with Lupron symptoms or 6-8 weeks of recovery from a hysterectomy. All this being said, your journal has been giving me an idea of what would be in store for me. Thank you so much for taking the time to do this. I will be praying for you and hope things get better! I will be visiting your site daily (it's listed as one of my favorites:-), and continue to try and make a decision about what I should do. Thank you!!!!& God Bless!
Hi, Tanya. Thank you so much for your post. We have so many similarities. I can see why you are afraid to try Lupron. I am only one person though you will find others who have posted (either for endo or IV) who have had similar experiences, some worse and some better. In fact, I was convinced that I would not get the bad side effects based on some discussions I had with nurses and doctors. When I started the journal, because I was reading so muhc about the bad things that could happen, I was hoping my experience would actually be positive so someone considering using the drug could have something to read by comparison, in addition to giving someone a daily indicator as to how it might go. In the end, I've only strengthened the negative, but that's valuable to know as well.
Was one of your pregnancies difficult? Is that how they suspect you ended up with adenomyosis? Or do they have a theory? It's all so frustrating, isn't it? Sometimes I feel as though we are teaching our doctors instead of them teaching us.
Thanks again for writing and reaching out! I'll keep you in my thoughts too.
lupron.journal@gmail.com
Hey,
Did you not have a Lap to diagnose the endo before they suggested Lupron?!
I'm glad you are having a good day today. That sucks about the pain-that's the very reason for the shot. If you haven't had a diagnostic surgery, they need to find out what's going on. Unacceptable!
Ignore the lap question, I looked on your time line and saw the surgery. Sorry, I can never seem to complete my thoughts in one post.
No problem! I can barely keep my head screwed on these days...
Definitely in the lap they saw the lesions... not nearly as bad as some people have in terms of what they were able to see.
You can have both endo and adeno, or one and not the other. Adenomyosis is really hard to diagnose and pretty much means a hysterectomy. It's when you have nodes of endometrium growing within the uterine wall. http://www.endometriosistreatment.org/html/adenomyosis.html
My groin pain was diagnosed by my GYN as the endo too, I had a pain in my right side too. After my 3rd shot, the pains got worse and worse. I went to the ER, and was diagnosed with kidney stones, each time I went, I had more and more stones, passing them on a monthly basis, with infections to go with them. As I put in another comment, it's been almost 10 years, nothing has changed, except my health has continued to go downhill, no answers as to why, except that the severe pain started after the 3rd shot, when the stones started, and my periods didn't stop either, they were 10 days long. I hope you find some answers, and feel better.
Hugs, Lynn
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