Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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Kidneys & Bladder
/ Interstitial Cystitis (IC) Support Group

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kendrac26
kendrac26
Hey y'all. I'm new here. I was diagnosed with IC going on 4 years ago I just never joined a support group. It all started out with me having symptoms of a UTI, but the cultures never showed any infection. I was sent to a urologist and after a physical exam she scheduled me for a cystoscopy. When I woke up from surgery she told me that when she went in with the camera she saw that my bladder was irritated and diagnosed me with IC and prescribed Elmiron. It's been a pain in the butt, I mostly have flares right before my menstrual cycle. I take pyridium to help with the pain and discomfort. I don't really have any problems with having to go to the bathroom multiple times a day or not being able to hold it, but I'm young yet, I'm kinda nervous about what's gonna happen in the future. For the past year or so I've been dealing with recurrent UTI's that come every few months. I only took the Elmiron for about a year and stopped. My primary doctor wants me to go back on it and see if it helps with the UTI's, I sure hope so. But on the bright side, I'm getting pretty good at peeing in a cup!! :)
deleted_user
deleted_user
Welcome Kendra,
just because you will get older doesn't mean you will have more problems with IC, keep up the good sense of humor it helps alot
deleted_user
deleted_user
Hello Kendra and welcome to our playground. You are very positive and that is definitely a good thing. I was on elmiron years ago but stoped because it was so expensive, I wonder if it has gone down any. I have my first cystoscope tomorrow and I am very nervous. I to am a master at peeing in a cup. I've had kidney stones since I was 12 and I'm now 35, so yeah lots of experience. Thanks for joining us here at DS. I'm sure ill see ya around.
kendrac26
kendrac26
The cystoscope was no big deal at all. I was in the OR and the next thing I knew I was waking up in the recovery room. When I first woke up I had a little bit of burning but it wasn't that bad, and it went away after a half hour or so. They put stuff in your bladder to numb it so that helps a lot. The first time you go to the bathroom might be a little scary, but don't worry. My urine was brown but that was only because of the stuff they put in there. It also had what looked like dirt in it, but that was only little blood clots. I had no pain the day after or anything, don't be nervous!!
harry3333
harry3333
scopes can be done under local anasthetic but I was never given that option for mine
deleted_user
deleted_user
I had my cysto in the OR and I was fine for the most part. He did send me home with pain meds and I was greatful. I hurt everyday but that's normal for me anyway. I didn't get to talk to the doc that day. I go back on the 23rd to see what he has to say. I'm glad its soon cuz I'm almost outta pain meds and today had been unbareable. I don't know what he will say or if there is anything else he can do for me but I'm going to suggest (yet again) he send me to a pain management clinic if he says there is nothing else he can do. Soooooo tired of hurting so bad I can't think straight. I have a family to take care of and a life to live. Sorry for the rant but just wanted to up date on the cysto. You are right there was nothing to it as I was under anesthesia. I just hope he has some answers for me or something else to try that we haven't already done in the past.
fibrIC2
fibrIC2
I'm a little puzzled. Why would Elmiron have any effect on UTI's? I don't want the side effects (hair loss, etc), so I've never tried it, but from my understanding of its actions, it can rebuild the lining of the bladder. A true urinary tract infection needs an antibiotic and flushing with water....
And I've had IC for 35 years (but did not know it back then). It does not mean that you will get worse as you get older...in fact, you will probably learn ways to cope with it, antispasmodics, diet, even pelvic floor exercises. And there may be more successful treatments with more time....hang in there!