Poll for DX w/ IC: do u have pain if u have to hold it?

[shortstuff]

Just curious regarding this symptom for those of you who have been diagnosed as having IC by your doctor:

1) Do you normally have pain if you have to hold urine and can't use the bathroom for awhile or do you just have the urge and it's really annoying but not actually burning and painful?

2) Did and your doctor also see hemorrhages/visual evidence of your IC during cystoscopy?

Just trying to figure some things out in my brain. This whole thing is such a mystery.

Thanks for your input!
Kerry

[ICNDonna]

When I'm flaring, I have pain all the time, but when I need to go to the bathroom it gets worse. I've learned to locate bathrooms everywhere I go so I don't usually have to wait long.

The cystoscopy in the doctors office (without anesthesia) is a valuable tool to rule out other problems, but does not usually show the visual evidence of interstitial cystitis. When I had my first cysto, my bladder appeared to be normal and healthy. It was not until it was over-distended under anesthesia (hydrodistention) that the IC was apparent.

Donna

[purpletomorrow]

1. annoying but no pain

2. cysto showed no hemorrhages; just over vascularization


-laura

[jameson77]

...Hey Kerry!
i just had a cysto/hydro/biopsy and have noticed more bladder pain than normal, when i really need to go to the bathroom, which dissipates after i go. i still have a very tender bladder, but am dealing with it with the help of rest, meds and heating pad. the procedure was well worth it and i have a fab doctor. one of my most notorius symptoms, however, is urethral burning, and that is a constant.

yes, the doctor saw hemorrhages and visual evidence of IC an sent me home with before pics and after distension pics...before was almost pale pink and smooth, and after was red and hemorrhaging. i am with donna on the in-office. i had one two years ago and was only able to be distended to 350cc
because i was awake and it was so painful...he never told me i had IC even though he noted red, patchy bladder wall inflammation. he was able to distend me to 800cc yesterday.

[Dakota]

#1 To answer your question about pain, if I wait or try to put off going for to long I can get into some very severe pain. Sometimes if I'm busy I'll try to delay it, but then the urge becomes to painful.

The answer to #2 is I've only had a cystoscopy and it showed nothing.

[BT2008]

Hey Kerry,

Without my pain meds, I am in pain all of the time, in some way or another, and the only time I am not in pain is when I am actually urinating! (Which is the direct opposite of having a UTI!)

Specifically to your question, yes, whenever my bladder gets full (or thinks it is full!) then it can definitely hurt, as well as produce some pretty nasty spasms! :mad: But the bulk of my pain is part of a cycle made up of urine constantly trickling down into a bladder full of open wounds and then after emptying my bladder these wounds rub up against each other making the pain escalate dramatically! Then more urine trickles down and ... repeat cycle...24/7...

I agree with Curl333 in that there are several different kinds of pain that I experience with my IC--and in several different places. I guess you could say that I have constant "burning pain" as the urine continually trickles down into my damaged bladder; and then there is the "Yowee! Ouch!--extremely sharp pain" that occurs with various spasms, at various times; and -- the "OMG...ground-glass-churning-around-inside-my-bladder pain" after I pee--everytime! I have yet to have any urethral pain with my IC, the kind of burning pain that is most often associated with a UTI. Most all of my continuous pain is concentrated inside the bladder.

On the cysto: I had both the cysto and the hydrodistention under anesthesia, and yes, scattered areas of hemorrhage, glomerulations and bloody efflux were present (hence, what I call "open wounds").

And you are right! IC is a very mysterious and frustrating disease--especially in ascertaining the cause of and a cure for...

I sincerely hope you do not have severe IC like I do...and if not, that it never gets that bad! Do everything you can now to protect your bladder from getting any worse in the future!

~Beth :)