Good news and bad

[jimmiesgirl]

Well I had my procedure done today, my urologist spoke to hubby while I was in recovery and told him the tests showed no IC (which is good news) doctor was shocked he thought forsure with my symptoms and voiding journal it was going to be a positive result but nope! So the bad news is now I'm left with all the pain and symptoms from before and have no clue what it could be????? I will talk to my Uro in 1 week at a follow up but until then I'm wondering if I should get a 2nd opinion or look for one of those gyno/uro doctors, does anybody have any ideas what could mock all the symptoms of IC perfectly to a T and not be it???????? :loco:

[Sarojini]

There is a subset of patients who have all the symptoms of IC, and respond well to all the treatments for IC, but do not have the classic pinpoint bleeding upon hydrodistention. Robert Moldwin and other prominent urologists talk about these patients and say they should be treated like IC patients despite the lack of evidence on hydrodistention. So, it's possible you could still have IC, believe it or not.

However, it's always good to get a second opinion... it's true other things could be going on, although since I'm not an MD I don't know what.

Don't give up... kep searching :)

[mela414]

my dr told me that you could have IC pain and not show anything on the bladder yet. He said there are some patients that have minimal pettechiae and Lots of pain and that the pain doesn't always go hand in hand with what they see.
I found that diet helps me a lot. As soon as I have something that is not IC fiendly I get horrible pain. That's the first sign that there's a problem...regardless of what they see.

[jimmiesgirl]

Yes I find food and drink are the true tell-tale signs!

[kadi]

Definitely get a second opinion. My urologist who did the cysto/hydro told me it was unlikely I had IC, but really just a "transient irritation". This made my family quite intolerant to me for several months, because they kept saying, "but your urologist said you'd be fine in 2 months". Every other urologist who has seen my pictures from that cysto/hydro has told me I have "classic IC". Strangely enough, at the same time this uro was telling me I didn't have IC, he was marking my insurance forms with IC as the diagnosis.

If you have food sensitivities & bladder symptoms, I'd definitely get a second opinion.

[icjen]

I just don't understand why these doctors work so differently with IC. Some will put you through so much and still no dx. Others will dx based on symptoms and r/o other things. I just don't understand why they have to put people though that. I guess lack of knowledge. You would think that they would know that you could still have IC without visable pinpoint bleedings. We do! Anywho...I wish you relief soon and hope you find out what is causing your symptoms. :grouphug: :kissing:
Jen

[ICNDonna]

Not every IC patient is diagnosed by hydrodistention. I know of some instances where the hydro didn't show IC, but the potassium sensitivity test made the diagnosis. I suggest you ask your doctor to humor you and do the potassium test. If he won't, then it may be time to go for that second opinion.

Donna

[jimmiesgirl]

Gosh how terrible this is to be back and forth from doctor to doctor, and of course they are all men (no offense guys) but the ones I have seen are not very sympathetic to my burning and irritated urethra, and my family is at the end of there rope with mebecause it's something they can't see (well beside me peeing every hour) it's hard for them to understand the level of pain and discomfort i am in. Kadi that is just horrible a doctor did that to you!

[jimmiesgirl]

Not every IC patient is diagnosed by hydrodistention. I know of some instances where the hydro didn't show IC, but the potassium sensitivity test made the diagnosis. I suggest you ask your doctor to humor you and do the potassium test. If he won't, then it may be time to go for that second opinion.

Donna



Donna how does the potassium test work?

[danii26]

Don't worry too much. I had my third cystoscopy and Hydro yesterday and it usually takes me a couple of weeks to feel kind of normal again and then even more time to feel totally normal. Today I feel crap, going to the toilet all the time. :toilet: I have this procedure done as it gives me relief for around 6 months. I hope it lasts for longer this time.

Hang in there and don't stress too much.

[poetgirl]

Jen said:

There is a subset of patients who have all the symptoms of IC, and respond well to all the treatments for IC, but do not have the classic pinpoint bleeding upon hydrodistention.

That is me to a T. It took about 4 or 5 years of tests and misery before I was finally diagnosed with IC, because my former urologist did not see pinpoint bleeding or Hunner's ulcers on my bladder. I eventually got a second opinion and the urologist looked at my history, talked to me about my symptoms and said, "Everything I'm hearing indicates you have IC. Let's get you some treatment and I'm not going to subject your bladder to any more tests." Once I started taking Elmiron and Elavil, I saw improvement in a few months' time. I tried weaning myself off Elmiron completely a while back and started noticing an increase in my symptoms again.

I second the others - get another opinion. Someone out there will eventually listen to you and take you seriously. Good luck!