Interstitial Cystitis

[livingwith]

Reading these stories I have tears running down my face because I have been through so much like all of these poor people.
I went through every “rule out” test known to mankind from barium enemas to cystoscopy with hydro-distension and so many drug trials I cannot tolerate them anymore. The aftermath of the cystoscopy was massive bleeding for a week. It was a traumatic recovery for me and I am typically a fast healer and a strong person.
I am 35, was 33 at diagnosis. I have three ...Read the full article

[sfabian]

I empathize with your suffering. I have cystitis and experience getting up every 2 hours at night to urinate. My situation recently got complicated with a bladder stone that I'm scheduled to have removed. Anyway, have you tried Elmiron. It's supposed to thicken the bladder lining. I understand it takes time but its worth a shot. I find that when I'm exercising to the extreme my bladder problem is somewhat less bothersome. Being a male this cystitis is somewhat unusual. Take care

[giapooh]

How horrible for you...Are you seeing a good Urologist? Because the Urologist I see gave me none of those tests. I had a urodynamic evaluation and ultrsounds of my kidneys, pelvis and bladder. The nurse told me I was the worse case she had seen and that I pushed to pee like I'm in labor! I catheter everytime I go to the bathroom. I can't sit, stand, work a full day, I don't sleep and I'm depressed. Are you on Elmiron, the most impt. I think, because it covers your lining of your bladder so to not cause further damage and pain meds? I have to take 1 pain med every 6 hours or I'm in agony.
Go on the IC websites becuse they have a list of foods to stay away from that will irritate the lining of your bladder. I read a few books too: The Intercystitial Cystitis Survival Guide by Robert Moldwin, MD< FACS and you don't have to live with Cystitis by Larrian Gillespie, md. Those were the most infornative. The others were just ok...coping with cystitis by caroline clayton and to wake in tears by catherine M. simone. I would suggest you go on Amazon.com and order the first 2.
Have they told you about the Interstim Implant? I have my first surgery this Wed July9th...they put tubes through your upper buttocks to the nerves in your bladder and you wear a battery back taped tp your side for 10 days; if you feel improvement in your symptoms you can have the Interstin Implant. Go on the Interstim Implant Website and sign up on their mail and they will send you a free DVD and alot of other informative info. It will not cure it, nothing will, stuck for life on meds and I will still have symptoms but hopefully not as bad, there's supposed to be a 80% success rate in reduction of syptoms but I'm sure that depends on the person. I was diagnosed 2 months ago and I cry everyday. Nobody gets it, so I copied some info. and gave copies to all my friends.
SWITCH DOCS>>>there are good docs and bad ones...I got lucky, thank god.
giapooh
Sounds to me like it's time to switch docs...