Not IC?

[marar76]

HI all,

I've just come home from seeing a really well respected Dr. here in NYC. He told me he not only doesn't think I have IC, he Knows I don't have IC. I'm feeling a little skeptical as what the hell have these past few weeks of hell been? I feel a bit better today but have been following the diet and resting. I just don't see how without a hydro/cysto he can tell me for sure. He says he's been specializing in this for years and did an exam where he told me If I had IC I would've been in extreme pain. I wasn't at all. He wants me to start a month course of macrobid and 1week of pyridium and see him in a month. Should I just thank the gods that this could be true or seek a 2nd opinion? Thanks so much! Hope everyone is well today.

:confused:

[ICNDonna]

I would go with him for the month at least. If he's right you don't want to have a bunch of unnecessary tests. Of course it's you who must make the decision.

I hope you continue to feel better.

Donna

[marar76]

Thanks Donna! I'm sticking with the diet for now as I feel it's really helpful. We'll see what happens.

[statesboro]

I can't say whether you have got IC or not. I have not read your other posts to begin with. It sounded like you were thinking you did have it. At least, something must be going on. I can figure you are not going to get another opinion.(or so far) OK. Some have done that before. Yep!

[Daisy Mae]

A couple of years ago I went to see a local urologist (I knew him from the hospital where I worked.) I already have an established uro in Houston, about 30 or 40 minute drive from home. I went to see the local one to ask him if he would consider doing rescue instills when I'm so flared up I can't make the trip to Houston. Maybe that was the wrong way to approach him, like I was saying "I prefer MY uro but can I use you when I can't make it to see him?" That's not how I meant to come across but I'm wondering if I did.
Anyway, he wanted to do some tests, he did a VCUG which determined I have the painful urge to void at 128 cc's urine in my bladder. (not sure what that knowledge really helps). He started telling me he's not sure I even have IC and that he would need to do testing to know for sure. I told him I had had multiple testing including several hydrodistentions with biopsies, etc.
He was so insistent that it could be something else that I got really frustrated and cried all the way home. I had already been through years of treatment for IC and had seen all the horrific red, bleeding bladder photos from the hydros. I am 100% sure that what I have is IC and can't understand why he would say otherwise, unless he wanted me to use him as my main uro and was trying to make a statement? Also, maybe he wanted to do all the testing himself to be sure, or to make money? I'm ashamed of myself for thinking this way, but I'm pretty protective of my bladder and hesitant to let anyone do additional testing.
It's pretty much a shock when a doc tells you that you don't have what you know you have and have been fighting. My prayer is that you DON'T have IC, that would be wonderful!
But you do have the right to know for sure exactly what you're dealing with and get the care you need. Please let us know what you decide to do and what you find out. You'll be in our prayers!

[VickiB]

He told me he not only doesn't think I have IC, he Knows I don't have IC. I'm feeling a little skeptical as what the hell have these past few weeks of hell been?
I hated that period where I didn't know for certain what was behind my symptoms! Very frustrating! I saw a few doctors who knew what it was, or what it wasn't, all leaving me to suspect that diagnosis isn't an exact science with these folks where IC is concerned. The best thing I can say is to listen to your own body & intuition. If you're skeptical, there's nothing at all wrong with getting a second or even third opinion.

Vicki

[marar76]

This is the 2nd dr. I've seen and he's supposed to be top in the field of IC, that's what makes it confusing. He's even featured on this site. The first uro wasn't convinced but he doesn't deal with IC. So confused.
:confused: