Thread: New to this board, but not IC
08-31-2008, 11:47 AM #1
New to this board, but not IC
Hi all! This is my first post as I am new to this board. I am really glad that I have found this site! I was diagnosed with IC after a cystoscopy with hydrodistention about 9 years ago, after many years living with all the "usual" IC symptoms. I actually can't remember when I wasn't dealing with urgency, frequency, burning, and severe pelvic and/or bladder pain. Of course I was treated for years for constant UTI's, even though nothing ever showed on a U/A or culture and none of the antibiotics ever seemed to help. I am currently searching for a new urologist because the one I have now doesn't seem to have a clue about IC, especially how painful it is for me or what I can do to help myself. The town I live in only has 1 urology office with 3 uro's in it, and they refuse to let me switch to a different doctor. I ended up with the one I had because he was the one on call when I ended up at the ER with a kidney stone (had to be surgically removed) and massive infection 14 years ago. He surely would not have been my first choice! At one point, after my IC dx, he suggested that I increase my lemonade intake! At that time, I didn't know anything about IC or how diet figures into it so I followed his advice. Needless to say, I paid dearly for that! I had forgotten about that until I recently got all of my medical records from that office and read it in my records. It upset me all over again when I read it! I can't believe that a urologist would suggest such a thing to an IC patient!!
In 2001, I had a 6-week series of DMSO treatments which never seemed helpful either. This uro has also suggested Elmiron, but I have yet to try it. Due to this doctor's previous advice/suggestions, and the havoc they caused, I just don't trust him. His bedside manner and attitude towards me certainly don't help me in the trust department either!
Because of these issues, I have not really been "treating" my IC for about 7 years. I HAVE to do something soon though, because my pain and other symptoms are just getting worse. I'm not sure if NOT treating the IC can make it worse or not. Does anyone know if this is true? Since I have not been doing much to help myself for so long, I have some questions and concerns about this. I'm about to start going through this forum and reading as much as I can about IC and others experiences and treatments. I hate that we all have to be here at all, but I do want to thank everyone for sharing their experiences here. I know that I am finding it very helpful! I really need some support and advice about IC, Elmiron, and urologists, and I am sure that I will get that here. Thanks everyone!
08-31-2008, 01:03 PM #2
After reading some more, I wanted to edit this and add that I also have endometriosis. I was diagnosed with stage IV endo about a year after the IC diagnosis. I have had quite a few surgeries for the endo and during one of them, my bladder was "stuck" to my cervix by adhesions, and it had to be freed from the adhesions and put back into the normal anatomic position. After reading some of the other posts, it seems that this is not as uncommon as one would think. I wonder what the connection is!?
08-31-2008, 02:24 PM #3
I think we all sit and wonder what it is caused from and why such a large spread of diseases fall hand in hand. I think its autoimmune as it has been said, but no one relly knows anything. they spend more money on researching on how to make bodies skinner, parts larger then they do on IC, its a terrible shame.
am sorry you have ic and end both
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