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Author Topic: Interstitial Cystitis Awareness (Please read)  (Read 2360 times)

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marie_x

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Interstitial Cystitis Awareness (Please read)
« on: October 02, 2011, 06:26:55 PM »

I just missed IC awareness month by a few days, but I thought I should really get the word out there.
Please inform yourselves.

http://www.icawareness.org/ is the most important place you should go.

Interstitial cystitis is a fucking debilitating bladder condition that ALMOST no one knows about for some reason.

People that have IC have the same quality of life as someone on KIDNEY DIALYSIS or someone that has cancer.

It makes it impossible for patients who have it to enjoy everyday fucking activities like eating food, having sex, or TAKING A FUCKING BUBBLE BATH without being in EXTREME pain.

That’s right. They can’t even have a cup of coffee unless they want to be in screaming pain later.

It is INCURABLE. You can only treat the symptoms. The only medication for it only SORT OF works and costs $700 a month.

And I have interstitial cystitis.

So do a lot of people.

I can’t even go to school any more. I can’t eat PIZZA. I can’t spend a minute of my life wondering if what I’m doing at that moment is going to cause me to be in pain.

So increase your awareness. This is just as awful as breast cancer or some other disease that people have sympathy for and are aware of and it seems like no one seems to know or care.

Patients are often misdiagnosed and written off as hysterical. The pain is REAL and it is horrible.

I didn't copy and paste this, this is a first hand account.

Doctors are generally not compassionate with treatment, it takes YEARS to get a correct diagnosis because awareness is so low.

Discuss?
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Pandora

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #1 on: October 03, 2011, 06:17:29 AM »

Good Lord, that sounds awful. I'm reading about it now and I'd never heard about it before. I hope doctors become more aware so they can stop being dicks to people suffering from this condition.
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Astica

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #2 on: October 03, 2011, 09:18:59 AM »

I'd never heard of it before, either. How long have you had it, and how long ago did you get diagnosed?
This is terrible, I hope someone manages to sort out at least some decent treatment if not a cure.
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marie_x

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #3 on: October 03, 2011, 11:06:17 AM »

I'd never heard of it before, either. How long have you had it, and how long ago did you get diagnosed?
This is terrible, I hope someone manages to sort out at least some decent treatment if not a cure.
I've had it for about five years and it took me a bit over four to get a diagnosis.

It's gotten worse recently. I had to stop going to school, stop leaving the house mostly, most times I go out in public I end up regretting it because I'm in so much pain that it's unbearable.
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lentower

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #4 on: October 04, 2011, 10:38:24 AM »

Camille

you asked us to read, not comment ; - }

pain is no fun.
i have some.
recurring.  
not as bad as yours.
nowhere near as bad.
and there are things i can do for mine

i also have the usual odds-n-ends of ill health
that come as you age.
all need some maintainence and time

you have my sympathy and XXXXXXXXXXs
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marie_x

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #5 on: October 04, 2011, 05:37:32 PM »

I added "discuss?" at the bottom. I would just like to discuss it with people so they know about it and the extent of it.

Having an illness like this is a lot more difficult when few know about or understand it and it's gotten horribly worse for me and I usually haven't told anyone in my life about it and I guess this is sort of my coming out for IC and letting people know that others have it, too.

i think the most distressing part of this is that i am so young and am having to find ways to cope with it knowing that it will be for my entire life, possibly.

thank you for your kind words & sympathies.
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lentower

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #6 on: October 04, 2011, 08:49:38 PM »

you have a lot of life ahead of you

better therapies and, maybe even, a cure could well be found
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marie_x

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #7 on: October 04, 2011, 09:24:14 PM »

you have a lot of life ahead of you

better therapies and, maybe even, a cure could well be found

that is my only hope for anything right now.
i have spent the last few days curled in a ball in my bed crying because i'm so pained and there's nothing i can do about it right now.
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my beautiful idiot

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #8 on: October 05, 2011, 10:18:57 AM »

I hope that by spreading awareness, more people take note and like Len sad, perhaps someday a cure could be found.

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lentower

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Re: Interstitial Cystitis Awareness (Please read)
« Reply #9 on: October 05, 2011, 10:50:31 AM »

the rate of growth in medical and biological research and
knowledge is exponential,
which increase the amount of hope
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