Dessica
12-23-2005, 12:24 PM
Hi everyone, I have been hanging around since October and many have you have been very helpful to me. I have had lots of testing done over the past two months and my local urologist, on my last visit told me he was pretty sure I had IC. My hydro, under aneth. was only to 525 and there were cracks in my bladder wall and alot of bleeding. The biopsy came back inflammed and having mast cells, however I did have a negative potassium test, didn't feel like anything at all. My uro referred me to a uro at a major hospital, they had a big sign that they were one of the top ten uro clinics in the nation. Anyway I saw the uro who supposedly specializes in IC, among other things and he tells me its very unlikely I have IC, he thinks it was mostly some pelvic pain thing and that many women have pelvic pain and they don't know why. He told me to stay on the meds I am on because they seem to be helping for six months and if the symptoms do not come back then stop taking them and he thinks I will be fine. He said that the reason he thinks I don't have IC is because I don't have pain and get up during the night to go to the bathroom. (which I did before I started taking amptrip/ and hydroxine) He also examined me and it didn't hurt this time which the last time I was examined it hurt so bad but that too was before I had been on the meds. Sex wasn't painful before this and we've only had it once since and it was tolerable but not enjoyable. He said I should be having a lot of pain if I had IC with sex. I asked him why my bladder stretched so small and the bleeding and mast cells. He says cysto/hydro etc. are a waste of time, they don't tell anything conclusive and he doesn't do them unless he suspects cancer. My main symptoms were unbelievable pain in my bladder, a constant pressure and spasm of lower muscle, a constant urgency. After being on meds a few weeks and watching what I eat, my sypmtoms now are more just an awareness of my bladder from time to time, it will hurt a little and be uncomfortable once in a while, more the last few days but I am getting my period anytime. I also still have trouble with that pelvic muscle or whatever it is spasming, but 1-2mg. of Valium is very helpful for that. This uro also said diet doesn't mean anything, and not to restrict myself. I do not have to go the bathroom during the night and I can hold it for many hours 4-5. I don't know what to do I don't want to go back to like I was. I was thinking about experimenting with my diet more and seeing what will happen. Maybe I just have Pelvic Floor Dysfunction. He also said he thinks I just developed dysfunctional voiding after my bad UTI in OCt. COuld dysfunctional voiding leave you rolled up in the fetal position crying and being so uncomfortable and being on pain meds every 6 hours just to function!? I have been very interested in trying the Desert Harvest Aloe, I think I will order some of that and stay on my amptrip. (25mg.) and hyrdroxine (25mg.) for now and maybe experiment a little with my diet. The other thing that has been happening is I am having joint pain especially in my knees, shoulders, and forearms. It will wake me up almost everynight and I have to try and get in a different position. Could this be a side effect from the meds? I don't really notice it during the day. Fibro? (I also started Birth Control to regulate my periods) I would appreciate any advice....Dessica