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Interstitial Cystitis (IC) Message Board
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Old 10-28-2004, 08:43 PM   #1
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Interstitial Cystitis

Anyone out there been diagnosed with this? If so, please tell me how are you coping. I have not been diagnosed by a doctor but I do have some of the symtoms. I have done some research and it seems there are "options" for people with this.

Any advise will certainly be greatly appreciated.

 
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Old 10-28-2004, 09:07 PM   #2
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Smile Re: Interstitial Cystitis

First of all, don't panic. I spent years not knowing what was wrong and being misdiagnosed. Finally, it got so bad, that I was on heavy doses of painkiller and became very depressed. I lucked out in getting a good urologist who prescribed elmiron for me. Within a few months {not immediately} it got rid of the awful pain. Seven years later,the interstitial cystitis is more annoying than anything else. Like a bad back, I have to be aware of it, and not do things that I know will irritate it; for me that's drinking a lot of carbonated beverages and alcohol, and making sure to not have a full bladder for an extended period of time {makes it ache}.

 
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Old 10-29-2004, 10:05 AM   #3
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Re: Interstitial Cystitis

Hi Karie. Try not to pay attention to it if u can. The bladder lining gets irritated anyways during menopause due to the decreasing levels of estrogen. Listen, I have that alot, bladder infections too and now lovely kidney stones. Have u had a catscan to determine if you have kidney stones?

Andrea

 
Old 10-29-2004, 10:14 AM   #4
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Re: Interstitial Cystitis

I try not to eat anything acid. For instance, orange juice or even oranges can kick it up. Also, chocolate and cranberries. I know when I have had an offending item because the IC kicks in.

Tea and coffee and anything with caffine will also irritate the bladder.

 
Old 10-29-2004, 06:31 PM   #5
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Re: Interstitial Cystitis

oh my goodness, this sure strikes a nerve with me. in 01 my doc thought i had this. my bladder seems to be ok when they look at it, but i have lots of trouble in my pubic region of my body. i always said my groin area is burning. i took the elmiron for 6 months no change for me. had a hys and my bladder tied up because not only at first did i have to urinate every 5 minues but i could barely step off of something and my bladder would leak. 3 years later and i still don't know for sure what my real problem is. i can get most relief from the chiropractor. i can say i can't let my bladder go on too long without emptying it because it will hurt for a while after it is emptied if it goes too long. Try a chiropractor before getting too involved with many meds. i have to say 3 years and some surgeries, test, etc. i don't really know what my problem is, but my life is based upon my bladder and always being aware of bathrooms. i still burn in my groin area at times, i am 46 today and wonder if this will be the story for the rest of my life ! ! ! !

 
Old 10-29-2004, 06:40 PM   #6
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Re: Interstitial Cystitis

karie36, what are your symptoms?

 
Old 11-07-2004, 06:57 PM   #7
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Re: Interstitial Cystitis

Thanks for all the very good and informative information. I have had two gyns with two opinions. One stated I had Interstitial Cystitis and that I pretty much had to live with it. The other one stated I did not because I didn't go to the bathroom 60 times a day (?). If only I could find a good gyn/uro and they could both come to the same opinion and give me something to help. My problem is the "burning" feeling. I have suggested the Elmiron and the gyn stated I would have to see a uro first. I have been seeing a uroglist for a year and been through all tests and he just pats me on the back and states "your fine"!. I go to him constantly for UTIs. Seems like this is also part of Interstitial Cystitis.

If anybody can give me any advise on what they did to control the "buring" and the UTIs, I would appreciate so very much. Also thank you all for your replies. I did not know menopause would be such a problem!!

 
Old 11-07-2004, 07:34 PM   #8
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Re: Interstitial Cystitis

karie36, see a GOOd urologist in addition to a GOOD gynocologist. I was misdiagnosed by doctors from both specialties for years, until I lucked out and went to a teaching hospital where two excellent physicians worked TOGETHER to diagnose the problem. Under anethesia, both a urologist and agynocologist viewed my bladdar {the procedure inflates the bladdar to see if there are tell-tell signs of interstitial cystitis - cracks and bleeding} and female organs. They determined that I had both interstitial cystitis and endometriosis.

By the way, I don't go the bathroom 60 times a day, either!

 
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