Interstitial Cystitis (IC) Support Group

hi traceyah

I've had IC since I was 9 years old I'm 30 now
when I was younger it would come and go.it came back worse when I was 19 since then it has gradually become worse.Lately I've have these flares last week I went to the ER because I had been in pain for a week i thought that I had an UTI but I didn't.I take pain meds everyday.but they were not helping me so they gave me valium.

I went er last week to-they did not help -I was there 10-10-what did they do for you? Where do you live?

Hello Tracey,

Seeing all these stories about how so many people are in so much pain and have to go to the ER scares me.. I don't have it THAT bad.. I have a constant weird feeling in my bladder that I am now pretty much used to but at night and sometimes randomly during the day it hurts pretty bad but its on and off.. I think everyone is different. I have had it go on for weeks but I just stuck to keeping positive and not letting it run my life..

I wish you the best!
Stacey

THANKYOU!! needed that!

The last time I was at the urologist, he told me that I should never put up with a flare for more than 2 days without coming to the office. His experience has been that if it's more than 2 days, it is usually a UTI.

The first time I had a cystoscopy, I was in remission for THREE GLORIOUS YEARS!!! Yes, it is back now, but with Elavil, exercise, and knowing what foods to avoid (or use sparingly), I feel it is well managed. I have changed my outlook, and decided that if I'm at a "2" (I put my pain on a 1- 10 scale, 1= low), it's still a good day.

You CAN live with this. It's going to be okay!

I am thankful for your uplifting post! I have heard to many nightmares-like people urinating 60 imes a day-I cannot phathom this-and need to find anyway to keep bladder from deteriorating like that...

how did a cystoscopy help you??

Hello

I didn't mean to scare anybody. I'm very sorry if I did. The reason I was in pain for so long was because I had intercourse.(i know that's too personal) but had to mention it. three years ago if I did I was usually in pain for at least 3 days but lately since this has gotten worse If I have intercourse I could be in pain for at least a week.I was surprised when they told me I didn't have an UTI at the ER. I'm usually in pain everyday but not as bad as last week.actually I had 2 good days this week I wasn't in pain at all.they didn't do anything for me at the ER they wanted to give me Pyriduim but I'm allergic to it so they gave me valium to relax my bladder and told me to take Atarax twice a day I usually take Atarax at bedtime bc it knocks me out I slept a lot last week

I feel for you. I don't have the symptoms like going to the bathroom all the time and urgency but I am in constant intractable pain. This has been going on for 2 and a half years. I get the installations; they're nasty, but they help. I'm hearing something about a pain implant. Gotta get a good pain management specialist. I'll let you know what the pain guy says.
Hang in there,
Gloria

I have had two flares int eh past 3 weeks. The first lasted about a week. I am about 5-6 days into the second flare. I saw teh urologist oin Friday for the first tiem in 3 years. I am taking urelle and enablex and hoping it will dissipate.