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Interstitial Cystitis: Those Of You Who Have This, And Nurses Too


LindaJoy
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Hi. I just got home from the hospital. I seem to be spending a great deal of time there lately, having tests to try to find what's causing my gut pain (between my belly button and hair line, smack dab in the middle of my abdomen) and my low grade fever.

I'm wondering about Interstitial Cystitis, as I have a friend who has it and she says I have all of the symptoms she did when she was bad with it. I then did some research, and I do, except for..

1.) My urine is totally clear. I've had it checked twice now, and it's clear of blood and infection. My family doctor insists that there would be blood in my urine with IC.

2.) I don't hurt when I pee. My abdomen hurts afterwards.

I hurt after I eat, after and during sex, after walking for awhile or being on my feet, after my doctor pushed on my bladder today (I about jumped out of my skin) and after urinating. Other times, too, but those are mainly when I do.

I have been running a low-grade fever with the pain, too, so this has thrown my doc off.

3.) Do you all run a low grade fever with flare ups?

I have some vaginal pain with this.

4.) Do you have vaginal pain?

The pain feels sometimes like severe cramps, other times like severe gas pains, and other times is a severe burning pain. It's not all of the time, but comes and goes.

This started one day after my period and after having sex. It's not gone away since.

I could really use some help here. This is very painful. My doctor has done blood work, which showed totally normal, two urine tests, totally normal, and tonight, a cat scan of my abdomen, which was totally normal.

Those of you who suffer with this, could you help please? Thank you.

Linda

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Oh, one more thing. Sorry.

I had a cat scan tonight which showed normal.

#) If I have IC, would the bladder inflammation show up on a cat scan?

It's my understanding that the inflammation is on the inside of the bladder, not the outside, but I"m not sure how a cat scan works. Would it show the inflammation on the inside of the bladder?

I'm sorry I have so many questions, but I've yet to get any help, or even communication, from my doctors.

Thanks again.

Linda

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I am no doctor for sure. Have you been worked up for pelvic inflammatory disease? That can cause a fever and certainly all the other symptoms you describe. This is not an std, but an infection of the female organs, which will affect everything else there. It would explain why you don't have blood in your urine.

Just a thought. Women can feel really crummy with this. morgan

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I've been diagnosed with IC. It is my understanding that the way to diagnose this is by looking into the bladder. A knowledgeable urologist is in order here as some are not as aware as others of IC.

I don't know about the blood/or lack of signifying if you have IC or not?

Sex definitely used to bring it on for me. Also, the pain can change for me. Something like pelvic burning to just plain pelvic pressure after urination only.

I don't know about your fever but I can tell you that the last bout I just had made me feel quite run down and sick - or is it that an autoimmune inflammatory process triggered the IC and that is what made me feel sick?

I'm heading back to my knowledgeable urologist about all this, but I doubt if he will know what causes all this.

This can truly be miserable. I know and I hope you get answers real soon.

The suffering can be enormous even if there is no bacteria identified in the urine.

There's a forum for IC also, but I can only follow one infirmity at a time or I'd go nuts. So I talk on this forum only.

If it is your bladder there are some things you can do for relief when a bout starts, but I think in your case they're not sure what you have yet.

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I know a hydrodistention is the only real way to get a sense of IC... although I think it requires going under a general which is not always the best thing.....

I think there is lots of Unknowns in the medical field....

I have had recurrent bartholin cysts, pelvic cramping going around my back and burning on and off for years now.....

IC has been the only possible dignoses...

Bactrim relives the problem but cant live on bactrim forever...

I feel for you b.c I know how difficult it is to have this......

DId you see a Urologist yet? Or your Gyno? They have much more experience with this....

Feel better.

oh BTW: heres a good site for IC pateints.... They have a really nice discussion board as well where you could ask questions and maybe get a sense of whether you can relate to others with IC

www.ic-network.com

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Thanks for your responses. I have an appointment with my gynecologist this Monday, then I see a bladder / pelvic pain specialist in two weeks. I do hope to get to the bottom of this soon. The pain is unbearable at times, although the IC diet that I've been on for about four days now seems to be helping.

Again, thank you, everyone, for your time and responses. I really love having a family here that I can turn to when my health takes a lousy turn!

Linda

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