Cytology neg..still no diagnosis

[amandac]

The good news is that my cytology tests were negative!! But I'm still having frequency and lower abdominal pain off and on. The CT scan showed that I have slow motility in my bowels (which I knew, I was worked up for heirshprungs 5 years ago with intestinal biopsies, barium enema, and other testing). My uro thought it was new information for me, he tried to explain that if my bowels are full it can press on my bladder and make me feel like I have to pee more often. I told him I had been dealing with this all my life and never have I peed blood/clots before or had frequency like this.

He got really quiet. I asked him then why my bladder was so inflammed. He said it would be from a bacterial cystitis, I reminded him I had 5 negative urine cultures since Thanksgiving. He then mentioned a viral cystitis or interstitial cystitis. He said that with IC its a catch all for when they can't figure out what is going on to cause the inflamation that won't go away.

He said I could try vesicare at a low dose so as to not make my constipation worse.

I went to my neurologist today and told him what has been going on. He thought about everything and said that with migraines, a lot of his patients have an inflamitory process somewhere else so it doesn't surprise him this happened. He said that if my migraines hadn't been so well controlled that my bladder probably would have inflammed much earlier than now.

So I am to try the vesicare for a month and see how that goes. My uro said if I have too many side effects, he would talk to me about instills and such.
Really I just wanted an answer after 2 1/2 months of pain and frequency. I am also having trouble with sex starting to be painful with my boyfriend, this has never ever been a problem for us before. The other night we had to stop so I could go pee in the middle...Not fun for sure.
I'm having trouble finding things to wear that are comfortable now..dresses and skirts but I live in NH...tights are sort of a must, I have to fold them down. UGH!!!

[lttlewun]

Hi!

I don't know your story, but are they saying you might not have IC?

[Calinda]

I don't have the best of comprehension. Are you saying that the Uro said that you have pain because of your colon pressing against your bladder? However, that diagnosis still doesn't fit all of your symptoms. Then your Neurologist said that you could be having inflammation because of your migraines?

Wow that sounds confusing and still not very definitve. Have you gotten any better if you've been on the diet?

Maybe that medicine will help. It sounds cold in NH--it must be hard to find the right clothes.

I hope things get better for you. I know the doctor thing is so hard to deal with it's a real nightmare. I guess it's hard for them to find things out--they aren't as geniusy as they'd like us all to think. Sometimes they don't really know.

[Julie B]

Could you find another doctor to get a second opinion? Just the fact that the doctor said that IC was a "catch all" diagnosis makes me wonder whether the doctor you are seeing knows much about. That may have been the case 20 years ago, but after a few tests, the urologist should be able to determine whether it is IC or another disease.

[amandac]

sorry for the confusion...here is my first post on the matter http://www.ic-network.com/forum/showthread.php?t=62372

I started the vesicare yesterday. I know after one day I will not notice a difference, so I will have to give it a little while longer. But I still had lots of pain, a swollen belly, and some frequency and urgency at work last night.

My Uro did say that IC is an auto immune process and that you have to really rule everything else out before he can make the diagnosis. But he also said there is no test for a viral cystitis, so I'm not sure how he can say if I have one or the other. I guess if my symptoms eventually go away. But I imagine that another cystoscopy will be needed to see if my bladder is still so inflammed and irritated? I have no idea what is going on any more. This is so frustrating...even more so I think since I'm a nurse and really like to have answers and things to be fixed.