hi everyone

[tesser]

My new doctor diagnosed me with IC today. I was diagnosed with vulvar vestibulitis/vulvodynia about 5 years ago when I was 19 and have been searching for a treatment for those symptoms since then. Most of my pain is in a localized area in the vulvar vestibule, hence the diagnosis of vulvar vestibulitis. I have a dull burning sensation in that area that never goes away and is aggrivated by all the things that you would expect to aggrivate it.. sex, urination, sitting funny. I've never had any success with vestibulitis treatments, frankly I have not tried many of them because they are masking and not healing.. most of the doctors I've seen have tried to prescribe everything from anti-depressants and painkillers to birth control.

I am told vestibulitis is seen in many IC patients, and that by treating IC you can get relief from the vestibulitis symptoms. I had no hope before this, the last few years I have been just trying to accept it but now there are many new possibilities.

I've been given a prescription for elmiron but after reading the elmiron section of this board I am not so sure I want to try it yet. I guess I don't really have much to lose, but given the new diagnosis I'd like to exhaust all my new possibilities first. :yikes:

So, sorry for the novel, I hardly ever talk about this and I am glad I found this place. I was just wondering, I was given what i guess is an informal diagnosis based on symptoms and the IC questionnaire because she didn't do any tests. How is IC usually diagnosed? My dr told me about a test where they inject something into your bladder and if it hurts than you have IC.. however she didn't seem to think it was necessary to do this. I've read the medical documentation but I'd like to hear it in english. :)

[Sarojini]

Hi there :)

IC is diagnosed in one of two ways -- either through a procedure called a cystoscopy with hydrodistention, or through the potassium sensitivity test (which is what was described to you). In the potassium test, a potassium chloride solution is put into your bladder by catheter, and if it causes extra discomfort or pain, then you likely have IC.

The cysto/hydro is a bit more involved. It's usually done under general anesthesia in a hospital operating room... your uro fills your bladder up with lots of water, more than you'd be able to stand if awake, and takes a look inside there. If he/she sees pinpoint bleeding places or ulcers, then he/she will usually make the diagnosis of IC.

HOpe this helps, and welcome to the boards!!

[Dixiefireball]

Welcome to the icn family sorry you have ic but yu havefound a great place for support here.
if you have the ex time please check out www.ic-network.com/handbook there is all type of great information there to help you out some
sending you hugs and prayers
Rhonda

[vm]

Welcome! :welcome: If you do decide to try Elmiron at some point - don't be too worried. Most people do fine on it.

[~*~Christine~*~]

Hi! :hi: Welcome to the board
I have been on Elmiron since I was 16 (2000) and it's done wonders for me with no side effects that I noticed, so don't be scared of it ;)

[KatyG]

Hi. I'm newly diagnosed also. I had the potassium test (Parson's is the name of the test) and that proved I had IC. My uro said normal people do not respond when potassium is injected, but IC patients have a lot of discomfort, pain, electrical-impulse like sensations. The test was done in the office along with two other tests and was just mildly uncomfortable. I've been on Elmiron for a week now and so far have had no problems or side effects. We're here for you. Good luck. PS. Have you tried Prelief. This has been a tremendous help for me.