Interstitial Cystitis

rough dx....i have had pts w/this but it was some time ago maybe something outthere now....no advice but best wishes

Anyone??

I see this post is a little old but it may not hurt to respond anyways...I am a new RN who was diagnosed with IC during nursing school (had symptoms for about 1.5 years before doctors could figure out what was wrong). I was found to have a severe case of it. I was afraid I would never be able to work or even finish nursing school because of it. I have been on medications since I was diagnosed about 1.5 years ago. Elmiron has been an absolute lifesaver, couldn't function without it. Take that 3 times a day to help build up the GAG layer of the bladder. Also take a low dose of elavil to sleep at night (helps with neuropathic pain). I work straight nights (12 hour shifts), I make sure to go to the bathroom at least every 4 hours, stay away from food and drinks that irritate my bladder (this can be very individual) and overall it has not affected my job performance. My doctor did warn me that it takes Elmiron about 6 months to take full effect, and it was true for me... Long story short, could barely get through my days (clinical, class, etc) or sleep before being diagnosed and going on meds and now, while I may use the bathroom more often than the average person, my quality of life is almost as good as before and I can work just fine....Hope this helps! :)

Hey! I have had IC since 2005. I was getting my first bachelors at the time and now I am in an ABSN program. Let me tell you - it's hard for me. I thought about registering with the disabilities office but I don't want that to follow me around after college and possibly lose a job because of it. I was lucky and live close to an amzing doctor who is willing to try just about anything and has written many articles about IC. The thing that really worked for me were the heparin instills that I did myself at home with a cath kit. Unfortunately my health insurance is so crappy and I can only afford about one instill of it a month...otherwise it would be like 1900 for a 3 month supply or something...ridiculous. I had no luck with elmiron but I was not compliant in taking it at all...I really should try to be now that I am back on my rents insurance.

The thing that helped me the most is knowing that while I can still get infections, there will be times when I'm in pain and there is nothing anyone can do about it. This might not seem like it helped but it does help knowing what exactly your options are. Like with a UTI, you HAVE to go in! Otherwise it will not go away. But with an episode of IC I just suck it up because it's not like it can turn into a kidney infection.

Drink lots of water and get a prescription for pyridium.

I was diagnosed with IC in 2007.

Elmiron does help, I also am now in pain management with helps immensely, and has given me back the ability to work like I did before. If that's a problem for you, consider asking for a referral!

It can be done, so don't fear!

My best friend has been battling IC for years. She was diagnosed six years ago and had it for a couple years prior with no diagnosis. She is in pain management and no medication has helped her. Narcotics drown it out to a dull roar, but she doesnt like to take them. She said that the only time she felt normal in the eight or so years of dealing with this was when she was in labor and they gave he an epidural. She didn't want to give up the epidural after giving birth because she didn't want to go back to the pain.

She has lost jobs because of this. She is a librarian, well educated, dedicated and brilliant. She is considering going on SSI. I feel so helpless watching her go through this sort of pain and misery.

Most cases are not this bad, thankfully.