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View Full Version : Recently discovered IC


suzziy
04-13-2008, 09:22 AM
Over a year ago I had a terrible bladder infection, after many courses of antibiotics, cystcopy (ouch) xrays, MRI's, CATscans of the bladder, I finally told my urologist I think I have IC -- his smug remark was, well that's good, but there is no cure. He had put me on Enablex which I told him was making things worse, and he then increased the dose. I was in severe pain. I truly wished at the time that I would die. At the time I was also having gastro problems and had to prep and I decided to stop taking the Enablex at the time and I felt better so I stopped taking Enablex completely-- and since my symptoms have not ever been as severe. I quit going to that urologist and went to a gyn for a laparoscopy hoping that removing adhesions would help (to some degree yes). I think I've had IC since my early 30's as I had similar problems before my hysterectomy (51 now) and I went into remission maybe until that past bladder infection??
I am scared to death my symptoms are going to progressively get worse. I really am not that thrilled about doing a bladder distention (my current urologist suggested) or instillations, etc., as those seem so painful and invasive. I am currently taking Prelief but I'm not sure it helps with the acidity because I get flares even if I really watch what I eat, but I think Prelief tends to help for some reason with swelling as my stream of urine seems to be somewhat normal and for the most part has helped with urgency.

Does any one know if this is a progressive disease? I've done some research on the internet and there is a product called Waterfall - D - Manose - made in the UK that is supposed to "cure" IC by ridding the bladder of bacteria attached to the bladder that doesn't show up in a routine urine culture -- the product is supposed to flush out the bacteria instead of trying to actually kill the bacteria. Anyone heard of this?

SharonA
04-13-2008, 10:57 AM
:welcome: to the ICN... :)

IC is not necessarily progressive. It can progress but that is in a small percentage of patients. This does not mean that you are one of them.

Also...As of right now, there is not a cure for IC. I hope and believe that there will be, one day very soon. I do know that when that day comes, Jill (the owner, founder and president of the IC Network) will come here and tell all of us that someone has found the cure. That will indeed be a glorious day.

(((Hugs)))

leelee88
04-13-2008, 11:44 AM
Hello and :welcome:to the ICN.. I am glad you found us!!

I am sorry you are going through this. Have you had a chance to look through the Patient Handbook. You will find all types of helpful info in there. Also I think the best defense against IC is being your own advocate. And reading and learning as much as you can. Here is the Link To The Patient Handbook!
http://www.ic-network.com/handbook/

suzziy
04-14-2008, 05:03 PM
Thanks for the hugs -- I needed them.

suzziy
04-14-2008, 05:05 PM
Thanks for the link to the handbook -- very useful. Have you tried CystaQ or Cystoprotek?