My doctor says she wants me to do a urodynamic test before confirming my IC diagnosis

[Julia Stockler]

Can someone please explain to me what urodynamic testing can accomplish in the way of closing in on an IC diagnosis? The AUA guidelines mentions it as a possible stage in diagnosing IC but does not explain why it is useful. My doctor told me every IC patient has reduced bladder capacity and that the urodynamic test will show if that is also my case or not. I think I need more convincing before putting myself through what seems to be a truly horrendous experience. Any stories, information or advice?

[steelerfan]

I’ve had urodynamic testing when I was first diagnosed with IC. That would have been 18 yrs ago? I don’t recall it being horrendous pain? They fill the bladder to see how much bladder capacity you have? Did the doctor say it was painful? In order to get a correct diagnosis the proper tests do have to be done. I understand your fears completely. I know with living with IC for 18 yrs anything that has to do with the bladder is scary.

[Julia Stockler]

I do worry about the discomfort, of course. But more than that, it isn't clear to me what exactly what is gained from this particular test. Is it just to evaluate bladder capacity? Anyway, thank you for replying. I hope you are doing ok now? Are you in remission?

[steelerfan]

I believe it is to determine bladder capacity? I’m actually in a bad flare at this moment. I was in remission for years. I recently had a D and C. I hemorrhaged and the doctor gave me Lysteda to stop the bleeding. A soon as I took the pill I knew something was wrong... it had a bad effect on my bladder. I instantly had trouble urinating and it threw my pelvic floor into spasm. How are you feeling?

[ICNDonna]

It's been many years since my diagnosis back in 1975, but I remember that urodynamics was no more painful than being catheterized. I find that if I concentrate on relaxing, it's only a little uncomfortable. It helps to determine muscle tone and bladder capacity and can be an important part of making a diagnosis. My poor muscle tone, along with small capacity, was a part of my diagnosis. You will find that for any test or treatment out there, there will be horror stories. Please be sure to look at the pros, as well as the cons, when making decisions.

I hope you have a diagnosis soon. I know that for me the worst time in my 44 (almost 45) years with IC was the time before diagnosis. Somehow, knowing what I would be living with allowed me to take steps to feel better.

Sending encouraging wishes,
Donna

[Julia Stockler]

Hi Donna! Thank you so much for your reply. It was actually very helpful and made me feel a lot better about the upcoming test. Are you in remission currently?

[ICNDonna]

I urinate more frequently than most people I know, but as long as I stick with my diet, I do well bladder-wise. I have other health issues, including nerve damage from back surgery so I am on a pain management program for that, but even before that surgery my bladder was doing well.

Please feel free to ask questions --- I know you will have many if you do have IC.

Warm hugs,
Donna