Interstitial cystitis

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Interstitial cystitis

Postby suep » Tue Feb 24, 2009 2:01 pm

Hi does anyone else have IC ? Ive had it for a few years, but only recently been dx, its in some of the lists as another Fibro side effect. I've just finished a 6 week course of cystistat instills and am due back at the Uros this afternoon, it has really helped me but apparently only helps about 70 % of sufferers. Im hoping the Uro will let me stay on a maintenence dose of it.
If there is anyone else with it, have you found that changing your diet helps ? I only drink water and red bush tea now, Id love a coffe sometimes and its tempting now Im feeling so much better, but Im nervous it will set me off again. I also avoid citrus fruit , tomatoes and vinegar.
Its not often mentioned as a Fibro side effect so I was just wondering if Im alone with this one ?
sue
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Postby Min » Tue Feb 24, 2009 10:13 pm

Hi Sue, I have this too & it controls my life; my urologist has now tried everything & given up on me. The IC diet does help & I only ever drink still water at room temperature. I'm convinced my IC is caused by a biofilm infection that does not show up in the standard tests.

There's a UK forum here:
http://www.websitetoolbox.com/tool/mb/cobf


& a US one here;

http://www.ic-network.com/forum/index.php
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Postby princess » Tue Feb 24, 2009 10:14 pm

sending you both a fibro cuddle () - not nice for you both - ouch!!!!
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Postby suep » Fri Feb 27, 2009 7:07 pm

Thanks Min, I am a member of COB already, but saying that I havnt been there for a while. I tend to go when Ive got a question. I know what you mean about it controling your life, I drink only water and red bush tea and occaisionally chammomile. Im so sorry that your Uros given up on you, and hope that they come up with something new that works for you soon.

Princess, thanks for the hugs, Ive been a bit better since the instill treatment so fingers crossed it keeps working :wink:
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