Interstitial Cystitis

[livingwith]

I got diagnosed with Interstitial Cystis three years ago, my senior year of high school. Basically my Dr.s thought I was having recurrent urinary tract infections and after several courses of anitbiotics were unsuccessful, we did the diagnosing for Interstitial Cystitis
I have tried basically all of the medicines that are out there, along with all of the treatments including instillations, hydrodistention, Elmiron, etc. I have been passed along from Dr. to Dr. with them not knowing what else to...Read the full article

[OABandIC]

i know how you feel
i'm 14 and it's really hard to go to school and sit through classes
i don't want to go anywhere with my friends
all the medicines i was on didn't work...
now i'm probably going to have botox injections
the doctor injects it into your bladder through a cytoscope when you're under general anesthesia
i think it's still considered experimental
hope this helps!

[Sigh]

I was also diagnosed my senior year of high school, in 2006, after struggling with increasing symptoms four about 5 years. And all of the conditions that are correlated with IC are making things even worst. I've been on elmiron since then, after they tried the catheter therapy which i don't even remember what it was called because I was so warn out from not getting any sleep, missing weeks of school, and getting urinary and throat infections all the time, and from teachers and friends treating me poorly cuz they thought i was just messing around since I didn't know what I had, even though i worked really hard throughout school. Right now In college im struggling, I took a semester off but it just seems like everythings becoming worst, im losing a lot of sleep, i cant sleep when i need to, and the elmiron is just helping to slightly relieve. My uralogist thinks i'm too young for surgery, and to try other treatments, he wants me to go back to the catheter one i had, probably hyper something. Does anyone else find they are having trouble with memory and reflexes because of being tired all the time. Anyhow, I would recommend that you would find out if you are one of the IC patients that have hunner's ulcers, because the surgery does something to burn off the ulcers, it might help, I also heard there was an episode on IC on the show Doctors, but i couldn't find it. I would experiment with what food irritates u the most. It's hard when you don't have time. How is everyone keeping up with school? I've become such an awkward person, being tired, and not remembering peoples names, trouble with short term memory, gaining weight from lack of sleep, and not wanting to dress up and stuff. And not knowing the cause, has anyone figured out the cause of their IC? and has anyone had a Uralogist who is willing to put everything out there, ive been on the same treatment for 3 years, and its just a mild relief. I was hoping something would be on extreme home makeover about someone with IC, cuz i know we struggle alot from handling work, school, and regular activites. The extreme home makeover people always are very informative about conditions, and they always seem to find the best of the best doctors. I just ordered two documentarys on IC, one is Interstitial Cystitis: Private Pain which was released in 2009 which would be the most recent help, the only most recent help i've found. I would also recommend seeking overseas treatment, sometimes some doctors know more or willing to put forth more.

[Sigh]

I was also diagnosed my senior year of high school, in 2006, after struggling with increasing symptoms four about 5 years. And all of the conditions that are correlated with IC are making things even worst. I've been on elmiron since then, after they tried the catheter therapy which i don't even remember what it was called because I was so warn out from not getting any sleep, missing weeks of school, and getting urinary and throat infections all the time, and from teachers and friends treating me poorly cuz they thought i was just messing around since I didn't know what I had, even though i worked really hard throughout school. Right now In college im struggling, I took a semester off but it just seems like everythings becoming worst, im losing a lot of sleep, i cant sleep when i need to, and the elmiron is just helping to slightly relieve. My uralogist thinks i'm too young for surgery, and to try other treatments, he wants me to go back to the catheter one i had, probably hyper something. Does anyone else find they are having trouble with memory and reflexes because of being tired all the time. Anyhow, I would recommend that you would find out if you are one of the IC patients that have hunner's ulcers, because the surgery does something to burn off the ulcers, it might help, I also heard there was an episode on IC on the show Doctors, but i couldn't find it. I would experiment with what food irritates u the most. It's hard when you don't have time. How is everyone keeping up with school? I've become such an awkward person, being tired, and not remembering peoples names, trouble with short term memory, gaining weight from lack of sleep, and not wanting to dress up and stuff. And not knowing the cause, has anyone figured out the cause of their IC? and has anyone had a Uralogist who is willing to put everything out there, ive been on the same treatment for 3 years, and its just a mild relief. I was hoping something would be on extreme home makeover about someone with IC, cuz i know we struggle alot from handling work, school, and regular activites. The extreme home makeover people always are very informative about conditions, and they always seem to find the best of the best doctors. I just ordered two documentarys on IC, one is Interstitial Cystitis: Private Pain which was released in 2009 which would be the most recent help, the only most recent help i've found. I would also recommend seeking overseas treatment, sometimes some doctors know more or willing to put forth more. I haven't done that yet. It's hard to keep up with everything

[Sigh]

i also found that fish oil vitamins are anti-inflammatory, i just started taking them a month ago, I haven't noticed the full effects of it, but I feel alittle better, and my hands are moist my hair is looking healthy. With the elmiron i think my hair is thinning. It's hard and confusing because you have to drink a lot of water because your constantly losing fluid, but that just make things worst. Fish oil has helped keep my brain somewhat hydrated, and i've had decrease amount of flare ups, the other morning though i woke up with severe pain in the pelvis, I used body heat pad, n with the heat it helped ease the bladder and the pain.