I finally got the call on the Lupron, and I'm scheduled for the first injection on Thursday morning. Will I feel anything right away? From what I've heard the first couple of days are same old, same old. And then it starts a few days later. And I've heard the first couple of weeks are pretty bad because of the surge of estrogen. What are those first bad symptoms you all have experienced?
Ok, some explanation about my reasons for going with the Lupron despite my serious concerns. First, I've been dealing with the pain from endometriosis for about 11 years. The real, life-altering pain for about six years. Not once in this time have I dealt with the kind of pain I'm experiencing now. And mostly, I've never had my life THIS altered by the disease. I'm not working. I'm afraid to exert myself. I was an elite athlete for 18 years. I had a heart disease and severe asthma, and I was still ok. Now I have this awful pain in my abdomen, under my ribs, and I can't get enough air. I'm tired, I'm sad, and I just can't deal with it anymore.
Plus, I got a bunch of blood tests done and almost everything came back normal. My hashimoto's disease is getting worse and it's affecting my thyroid hormones more, but we already knew about that. Nothing else came back positive. So I can't think of anything else that would be going on. And then yesterday's pulmonary appointment was interesting. I didn't mention the idea that the endo was on my diaphragm to the doctor. I wanted to know what he would think of on his own without that diagnosis. I told him I had stage IV endo and had surgery four months ago, and that they found endo all over my lower abdomen, but my upper abdomen was fine. After discussing everything, the doctor said "well, you know, endometriosis can get involved in the lungs". He thinks there might be a chance that I have thoracic endometriosis. Or pleural endo. I'm not sure how I feel about that. It can be really bad apparently, but it usually causes coughing up blood, and I haven't had that. I've only had the lung pain for about three months and I've only had two real periods in that time. So I'm not sure. But I think the Lupron wouldn't be a bad idea- because apparently if left untreated, thoracic endo can cause lung collapse, and be really bad.
So that's where I'm at. I have an appointment about the hashimoto's with a new endocrinologist tomorrow. Gonna ultrasound to make sure the masses aren't getting bigger. And then I start the lupron on Thursday. Wish me luck. And I'll keep updating!
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2 comments:
I shall be thinking about you. I'm trying to get in to see my doctor because the side effects for me are currently far worse then my endo (we tried the zoladex/lupron in order to stop my endo getting that bad again - it's not there again yet so preferable to this). It may just be teething problems but we'll see and I'll let you know. One thing I have found from my research is that it suits some people perfectly and others it really doesn't. I expected symptoms but nothing like this other people may expect worse symptoms and actually be ok - it all depends on your individual body. I have reacted badly to oestrogen based treatments before so that's probably my problem. I'm not trying to put you off, honestly, I'm just trying to let you know I am right there with you at the moment and am here for you if you want to talk *hug*
Take care of yourself and sorry to hear about the suggestion you might have pleural endo.
So, did he say what the difference in symptoms would be with the pleural/thoracic versus diaphragm involvement? From my understanding, the thoracic involvement *could* be causing "visable" (per a scan) changes in or around (pleura) the lungs. That may not be true though. Endo is SO confusing!
I can only tell you my experience with Lupron, which, seems to differ from a lot of people. I had add back therapy right away...I'm not sure if that "helped". I never got the surge of symptoms. So, it may or may not happen. I wasn't warned about it by my Dr. though...only through script assist.
Don't be afraid to ask questions! I hope it goes well. I questioned myself even after taking the shot, and, I was so scared. I'm not sure if it helped overall...I'm definitely not in the pain I was before surgery (I had surgery and then Lupron).
I'll be thinking about you!
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