Interstitial Cystitis / Painful Bladder Syndrome

[teh-love.livejournal.com]

This is myt first post here, I am wondering if anyone has this or knows annyone?

( http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/ )

Its so bloody painful i really am at a loss for words. Anyone who's had a UTI knows how much its sucks. Imagine feeling like you have a UTI 24hrs a day 7 days a week, 365 days a year.

I would love to hear anyones advice, anyone who has this please let me know how you went about getting it fixed? I just had a bladder Cystoscopy ( http://en.wikipedia.org/wiki/Cystoscopy ) and WOW was that painful, they didnt put me to sleep. And i got a infection as a result of it. The second set of test to be done is putting a Catheter in my bladder ( http://en.wikipedia.org/wiki/Catheter ) Please any advice would be great as im in a lot of pain, and im feeling really frustrated.

Thanks in advance.

Comments

[br0ken_dolly]

i don't have any advice-- i just wanted to say that i *really* hope you feel better. when i get a UTI, i really think it's the worst pain and discomfort i've ever experienced, so i cannot *imagine* having that kind of pain 24/7. i'll think happy healthy thoughts for you :/

[teh-love.livejournal.com]

Oh thanks so much...this is just all too much for me.

[amberdoopie.livejournal.com]

How horrible! I'm sorry.

It is my understanding that they do not have a cure per se - but perhaps by searching the internet you may get some ideas? Good luck.

[teh-love.livejournal.com]

Ya there is no cure, most dr. and people dont know that this even exists!

[sua-sponte.livejournal.com]

I don't have it, but you might want to try to "friend" LJ'er spiritonparole (http://www.livejournal.com/users/spiritonparole) because she has it and recently had successful surgery.

I'm sorry for your pain. I hope it gets better.

[teh-love.livejournal.com]

Thank you so much..i have requested for her to friend me!

[hoodwink.livejournal.com]

I wish I had some advice for you. but I honestly didn't know there was such a thing until I read this post. Thanks for the info.

[teh-love.livejournal.com]

My pleasure, my goal is to educate myself along with everyone else! I hope to find some help from someone!

[doreefille.livejournal.com]

my mom has interstitial cystitis. She had a biopsy, to make sure that's what it is. Then the site was carterized (sp?). They basically burned her to stop the bleeding. But even with that, hers didn't get better until she had a hysterectomy. She had endometriosis, which agravated the IC. She still has IC, but she says that it doesn't really bother her anymore unless she doesn't pee for too long. Hope that helps

[unwanted4ever.livejournal.com]

I have IC and am currently on Elmiron and Oxytrol...This was very helpful for me... http://www.ichelp.org/nursingpresentation/ICANursingPresentation.pdf

Good luck!