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Question about the condition of an IC bladder

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  • Kim Schy
    replied
    I also am able to hold it in for long periods of time on a good day. BUT.....after I do go, I am usually in pain for the rest of the day. In my own terms, I call this retention pain. It doesn't pay for me to hold it.

    Lyn

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  • PikkuMyy
    replied
    To clarify: CCs and MLs are the same measurement. CCs are usually used in the medical world whereas Mls are used to measure commercial products like shampoo and soda. (I work at a hospital for injured wildlife.)

    I haven't been diagnosed yet but I know that although I get really bad urgency and frequency, when it's not bad, my bladder can hold a LOT. I've never measured it but at Thanksgiving we were driving down to LA and couldn't find a bathroom open late at night on some highway. I finally had to pee on the beach and I swear that I was peeing for about 5 minutes nonstop. I couldn't believe how much my bladder held. (I was in an enormous amount of pain before I went but still able to hold it in.)

    Thanks, Donna, for clarifying the awake v. distention "normal" amounts.

    Emily

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  • mayray518
    replied
    When I first got IC I had to go 30 times a day also but found out that my capacity was normal, 1000 ccs. It was because of the inflammation that my bladder would not hold anything. I think scarring can cause lower capacity. The only time I have heard of someone getting their bladder removed was because they were at their wit's end (something we all go through) but you pose an interesting question. I wonder if there is anyway to increase your capacity.

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  • Janetbb
    replied
    Hi,
    After my most recent hydrodistension the uro told me that under anaesthesia my bladder capacity was 150mls. When I'm awake it is usually less than half that so as you can imagine I do have to pee very often, around 30 to 40 times a day. I just wonder how small your bladder has to go before you reach the end of the road and have to have the bladder removed. At the moment my symptoms are worse because of a prolapsed uterus. I am on the waiting list for a hysterectomy and I wonder how ICers fare after that operation.

    Best wishes,
    Janet.

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  • georgie
    replied
    Hi All,

    I completely agree with you Cath in that a good uro can make all the difference (especially with the emotional/coping aspect of things). I had one of the best uro's in Montreal but he didn't deal with IC so even though he was great, he wasn't great for this! So I know have a uro who knows (a bit) more , but isn't all that up to date. Other than that, there's only 1 left who I saw once before who is downright nasty (I was warned by my nurse & even my other doctor that his bedside manner was "lacking" & when I saw him once, for 5 minutes, this was confirmed!)...so I looked into options & I have some good news!

    I made a call last week to Kingston, Ontario (3 hours away from Montreal) to see if I could be seen by Dr. J. Curtis Nickel (I looked on this website under physician listings & he's highly recommended and runs a lot of clinical trials for IC). A nurse called me back today and said as soon as I get a referral from my current Uro then I can be seen by him and maybe even be part of a clinical trial.

    Here's a link with info about the next trial he's running if anyone is interested (they're carrying it out in other places in the US as well).

    http://www.scienceblog.com/community.../20035129.html

    Just through talking with the nurse I could tell she was very knowledgeable (well, at least compared to what I'm used to here) and also very very nice, so I'm feeling a bit hopeful. First thing to make me all week!

    Best wishes to all,
    Shelley

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  • lotsofgirls
    replied
    Hi Shelley,
    when I arrived in Calgary I had to wait 8 months to see the uro who is best with IC, I could have seen a regular uro in 2 months. But to answer your question it was worth the wait because he is right on top of everything in IC. I know how hard it is to switch specialists, but if you can find out who is the best IC specialist in Montreal it would definitely be worth it to get a referral, the other uro could treat you in the meantime. As IC hasn't got a cure right now the relationship with your uro may be long term and I know I feel alot better with my uro knowing that I can talk about anything and he has time and up to date knowledge.

    Cath

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  • ICNDonna
    replied
    I do have a suggestion --- and that is to write down questions you have and take the list with you to your doctors' appointments. That way you don't forget to ask any. I think doctors actually appreciate this.

    Sending warm hugs,
    Donna

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  • georgie
    replied
    Hi all,

    Well, I'm envious of all you "big-bladdered" peoeple! :p

    Hehe, no actually I'm confused now . I knew there was a big difference between what a bladder could hold with/without anesthetic but I'm not sure if the number my doctor gave me (450cc) was with/without? Although he did tell me "your capacity is normal"....I think....Oh, too much information (or too little!).

    What I would give to sit down with a doctor who knows a lot about IC for an hour and just ask ALL my questions and voice all my concerns! With my uro now, I have to speed-talk to get in just a few questions! wink Do any of you find that one of the most emotional draining aspects of this illness is the fact that it seems tha no one is quite sure what to do with an IC patient?... I certainly do!

    Hope all is well!
    Shelley

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  • Sarojini
    replied
    Hi... I just found out my bladder capacity under anesthesia is like Donna's, 700cc. My uro did tell my husband that that was less than normal. I have no idea what my "awake" capacity would be. I know from doing a voiding diary that most of the time lately I void between 50cc and 150cc per void.

    Jen

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  • ICNDonna
    replied
    Normal bladder capacity, when awake, is approximately 500 cc (about a pint). However, under anesthesia, a normal bladder expands to approximately 1000cc when distended. My bladder is usually distended to 650 or sometimes 700 cc during a hydro, but is considerably smaller without the anesthetic.

    Donna

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  • tigger_gal
    replied
    wow color me surprised... I have never heard of a normal bladder being so small at 450cc.. I was always told 1000 to 1200ccs... I got curious and was looking thru some sites and not one told me what a normal bladder held... My uro and ic specialst says a lil over 1000cc is a normal bladder...
    is there a diference between milloters and cc's??
    pin point bleeding is diffently a sign of ic. my poor bladder looks like lightening struck it a few times with a half of million red dots....
    I can only void 3 ounces at a time that was before and after my hydro on the 4th of Feb...
    hugs
    Brat

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  • dixiefireball
    replied
    i have never been told by my uro how much my bladder holds but i have never asked either shame on me i also don't know how much a normal bladder holds but i do know when i go to pee i do pee alot my uro did how ever say i had a large bladder which is good for me since most ic pat has smaller bladders. what i worry about is right before i take a bladder treatment i try to empty my bladder but still when i put the cath in i can still get 200 cc threw the cath that comes out sometimes more. i know i'm not emptying my bladder completely but the doctor doesnt want to cut on me unless its just an have to no way out situation (sp?) but i do know i'm not emptying my bladder when i need to be and i believe the ex urine i'm holding in my bladder is causeing more uti for me frown

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  • georgie
    replied
    Hi guys,

    Aside from my urologist telling me what normal capacity is, from everything I've read 500 cc seems to be about average...this is directly from webmd for example: "The average adult has a bladder capacity of about 500 milliliters (16 ounces)". If you google it for yourself you'll see about the same (however, you have to be careful with internet sources).

    I've also done a lot of reading via the Medline database (through my University)and this database contains only peer-reviewed journals so the info. is reputable and average capacity they cite is usually >350 - 550&lt.

    Also, if you read my post above I was diagnosed in 1999, but there is no indication of scarring. In any case, I'm not a doctor & frankly even doctors haven't seemed to reach a consensus on diagnostic criteria, so who knows.....all I know is that regardless of how my bladder looks, what it holds under anesthetic, or what the biopsy will show, I have to urinate all the time and always have the feeling of having to go!!

    Best,
    Shelley in Montreal

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  • ICNJess
    replied
    In regards to capacity, like Dana said, the normal size of a bladder is around 1000-1200cc's. Not every IC bladder does have the scarring and bleeding and small capacity--but the fact that you have scarring and small capacity makes me curious as to why you haven't been diagnosed?

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  • DanaW
    replied
    Hi, Who told you that normal capacity was 420 cc? I believe that normal is anything above 850 cc. Most people have over 1000 cc (non ic-ers)

    Also, the fact that you have a few glomerations is conclusive enough to have the diagnosis of IC. Plus, your lab results may come back with mast cells...which means you have inflamation. There are people who have healthy looking bladders but, still have the symptoms of IC. My bladder only held 650 cc. Yours in definately not a normal size bladder...you may want to check into finding a different Uro. Good Luck :0)

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