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interstitial cystitis missory

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Old 11-20-2006, 11:37 AM   #1
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Join Date: Jun 2005
Posts: 16
aspen05 HB User
interstitial cystitis missory

I have interstitial cystitis (IC). I was diagnosed in march of 2004. I have some other health issues as well, such as feeling very weak alot during premenstrual time, and i am not sure if it is all tied together or if i have different things goning on.
I would like to know if there is anyone else who has IC and experiances alot of different problems such as these...
Painful bladder infections that occure after taking a bath,or intercourse,
Bloating, nausea, abdominal pain from the pelvis to the bottom of my ribs,
Terrible weak feelings just before starting my period, Painful bladder infections after my period ends, lower back pain
and an all around missorable feeling most of the time.
All of my blood tests have come back normal. The only sure diagnoses that i have is the IC, but i can't imagine that all of this pain and missory stems from a bladder deseas.
I don't have great insurance, so i can't afford to go in for the bladder distention thing that can be done every so often for women who have this. I had it done once and it only seemed to work for about 3 months and then all symptoms came back full force. Please if anyone has any advice or comments i would love to hear them.
thank you,

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Old 11-22-2006, 07:39 PM   #2
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Posts: 154
sunshine8790 HB User
Re: interstitial cystitis missory

I've known I have interstitial cystitis for 2 years...I don't have bladder infections......but I have the awful low back pain, and kidney pain.....
and abdominal pain and bloating.......This disease is very painful and frustrating.......I've had 4 bladder hydrodistentions, and been instilled twice with silver nitrate.......tried Elmiron but had to stop it because it made my hair fall out....doesn't seem to be any answers where this disease is concerned......and people aren't very understanding of what you're going through, unless they're going through it theirself. Wish I had some answers for you, but I'm seeking answers as tired for being in pain all the time.

Old 11-24-2006, 05:55 AM   #3
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Posts: 129
germanshepherd HB User
Hi To Both Of You..

Hi to both of you and so sorry you both are miserable. IC can be debitaing. I had it, in remission for some starnge reason , knock wood, not complaining, about 8 yrs ago and didn't have a clue what was going on. Started actually yrs befor that with a lot of uti's. Pain in bladder. Then went to idiot urologist, hes luckyI didn't sue him, He did a procedure under anesthia, cystoscopy and stretched the urethra because of chronic UTI's. He didn't tell me before hand he was doing that and I flared for a whole year with all the symptoms ypou ladies are discribing and more. It was excruciating for me to pee for a whole year! I found another urologist, who was very sympathetic, and told me I had IC. He suggested elmiron, but wouldn't take it as I am very vain about my hair and was afraid. I suffered for a year and then everything went into remission which sometimes that could happen. This was weird though. My best friend who didn't understand this whole IC thing when I was going through it, got it herself 4 years ago. her hubby passed 8 years ago, she is a few years older them me, I am 45. She started dating this guy who was "well indowed" I don't know how quite to put that. Anyway, when they started having an intimate relationship, bingo! Lower back nerve pain, Bladder pain, pressure and so forth. I took her to my urologist, but she didn't care for him. She only has her dad on her side, he didn't understand and old school anyway. Her hubby's family ignored her completely, not because she was dating, which they incouraged, because that's there true colors. I was the only one that stayed by her side, boyufriend too.Went on the internet and we both live in NY, so I e-mailed a top urologist in NYC. He gave me a name of a wonderful women here where we live and she has helped her tremendously.
My friend and this urologist bcame friends and she , the urologist hugs my friend everytime she sees her. I know she perscribed "elival" which helps for the pain. But the side affect is your hungary all the time. She is skinny and takes it when tiomes are bad with her IC. I am sorry this letter was long, but i know foirst hand about this IC and IC is one of the signs of fibromyalgia which I have. Love to you both and prayers you both into remission as I did, Tammy

Last edited by germanshepherd; 11-24-2006 at 05:56 AM.

Old 11-26-2006, 11:02 AM   #4
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Join Date: Jun 2005
Posts: 16
aspen05 HB User
Re: interstitial cystitis missory

Thank you for all replies. It is true that this is a very frustrating disease to have, sometimes even having access to a public bathroom is difficult. People don't understand why or how I can be in such discomfort after just a short car trip to a store or something.
My children, husband and I went to a video store once to rent some movies and as usual, my bladder was in pain and i needed a restroom NOW, but i was embarassed so I just told the store clerk that my 3 year old had to use the bathroom pretty bad. They told me it wasn't store policy to let customers us the restroom and there were no other bathrooms anywhere near the video store so we hurried and paid for our movies and rushed home. That is just one instance, but poeple in general don't seem to understand what people with IC go through just to leave the house and do simple tasks.
THank you for listening, and thank you for your prayers.

Old 11-27-2006, 04:37 AM   #5
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Join Date: Nov 2006
Posts: 129
germanshepherd HB User
Re: interstitial cystitis missory

You are very welcome Michelle and if there are any more questions or just to chat, let me know, I'm a good listener, take care ,prayers, Tammy

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