wareagle Posted January 30, 2008 Report Share Posted January 30, 2008 Hey guys...need some help from those of you with POTS and IC. I had a cysto. w/hydrodistention last Aug. results showed no bladder lesions or any problems indicative of IC but b/c of my symptoms and response to diet changes have a tentative dx. of mild IC/pelvic pain. I've been doing okay with it and have had no treatment other than trying to watch what I eat. This past week has been horrible though, don't know what's going on...somehow triggered a bad flare. I had just been to the uro. too and told him I was fine! I took an at home test for infection and it was negative...don't worry will go to doc. to be sure. I have a call into my uro. too but wanted to get your opinions before I saw him again.I'm not sure what treatments are okay for those of us with ANS problems...so sensative to medications...are rescue installations okay for us? I don't know what to do..I'm so miserable. Got some AZO but don't want to take too much w/o consulting Dr. and it didn't really help anyway. Doing the whole heating pad thing...taking prelief before meals. I've been pretty slack with my diet so I'm going back to being really strict but don't know how long that will take to help.Any suggestions or experiences would be so appriciated!! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 30, 2008 Report Share Posted January 30, 2008 Sweetie, don't know what to tell you. I get the abdominal pain, but my trouble is more with urgency and the worst pain is right in my urethra. I usually get a small towel or something and get it as hot as I can stand and "soak" that area. It helps relieve the urgency a bit, but I haven't found anything that helps with the bladder pain.A million years ago, I had DMSO instillations. About 4 or 5 of them I guess. I didn't notice that they helped a lot, but they sure make you stinky, although you can't smell it yourself, everyone around you sure can. It was FDA approved for it back then, but I don't know if it still is. No one has ever given me a diet or anything like that for it, so I have just learned to live with it. Sorry I can't be more help. morgan Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 30, 2008 Report Share Posted January 30, 2008 Wareagle,Yuck! Welcome to the unfortunate club!Like Morgan, my problem is mostly with pain in my urethra, and some "yucky bladder" feelings. It comes and goes. It's always worse before my period. I don't know about the rescue installations affecting the ANS. I tried a course of them, but it didn't really help. Actually for me, the hydro itself seemed to help the most. It's almost like it overwhelmed the nerves in my bladder so badly, they shut up for a while.Also, drink water! Then drink more! I've noticed that if I'm really burning, sometimes just doing that can help. I wish I could help more. Just know that you're not alone!Amy Quote Link to comment Share on other sites More sharing options...
runningshoe Posted January 30, 2008 Report Share Posted January 30, 2008 I have IC as well. I had it in my twenties and then went into total remission for years. After pots hit me last year the bladder problems returned. It is so hard to have multiple chronic conditions. If I am not potsy I am probably having a bad bladder day. I did instills way back when but got know relief. The best thing for me is the Elavil for pain (small dose everday). The pain was so bad last year that I was taking percoset as well. It takes time to get on top of a flair. I recommend a bland diet for a while, and some pain relief if you can get some meds. It will pass. It will come and go. Worrying makes in worse. Put on your pjs and take care of yourself. The ic-network website is great. Other possible causes of your pain could be infection or kidney stones. I also wonder about the neuropothy component....The high salt diet can't help either. You are in my thoughts and I am sending you healing wishes. Quote Link to comment Share on other sites More sharing options...
wareagle Posted January 31, 2008 Author Report Share Posted January 31, 2008 Thanks guys...heard from my Uro. they're giving me sample of UTA (Urella) to try. They said if I tolerated the AZO then this should be okay too...we'll see (possible side effects made me nervous, but they usually do). Not sure what to do past that point...looking at all the possible treatment options. The hydro really helped me too..more than I thought it had apparently. Don't mind doing it again...just hoping to find a more permanent / less invasive solution. This blows!! How are we supposed to get enough sodium when salt irritates the bladder?! ARRRRgggggg! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted February 1, 2008 Report Share Posted February 1, 2008 Wareagle,Like you, I wouldn't mind doing the hydro again. It really helped. I had more or less six months without pain! Yes!If it got bad again, I'd do it. Right now, it's not bothering me enough to bother with it.It comes and it goes. It's hard to not get discouraged when it's bad, but with me, it's always gotten better. Sometimes I just have to keep telling myself that!Amy Quote Link to comment Share on other sites More sharing options...
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