questions about cysto/hydro results

[Gilly]

Hello everyone,
I was posting here for a while in March and haven't really been around since because things changed a lot for me. I ended up in the hospital with a kidney infection because I couldn't tell that I had any bladder infection since I always the symptoms of UTI. I didn't even realise anything was wrong until the really bad kidney pain hit...anyway it was e-coli in my kidney so I had a week in the hospital recovering from that. During that time they did the cysto-hydro and my uro said that my bladder looked good and that I didn't have IC. I just can't understand why I have all the symptoms of IC if I don't have it. While I was very relieved to hear that I didn't have it...I still wasn't totally convinced. Has anyone been told that they didn't have IC only to find out later that they actually do? Does IC always show up in the cysto/hydro? If anyone has any advice for me I would love to hear it...I just feel so strange that all of this happening for apparently no reason at all. Even once they have gotten rid of the kidney infection I still have the bladder symptoms...what's the deal? Thanks so much for you help.
Gilly

[ICNDonna]

Not everyone with IC will show the classic signs during a hydrodistention. If you're still having IC symptoms, you might ask for a potassium sensitivity test.

Sending gentle hugs,
Donna

[Calli]

^Whats that?

[Ginny]

Is this your first biopsy? Did they do the biopsy when they did the scope?

Ginny

[travelgirl007]

Gilly,

I have had a cysto in the past, about 4 years ago, and despite having constant gross hematuria, extreme pain, and mostly negative results for a UTI, I was told I did not have IC. That urologist was not nearly as thorough with her testing, though. I ended up suffering with repeated severe IC attacks in the years since then. I had CT's and MRI's, checking for everything, but what I had.

The materials I got from my new urologist state that it typically takes 4-5 years to get a diagnosis. It also went into the other physical symptoms of IC. For example, in mid June, I made 4 trips to the ER in 1 week due to severe pain in my back, buttocks, thighs, sides, knees and lower abdomen. I also puffed up like a balloon, gaining 17 lbs in 2 1/2 weeks. I was diagnosed with sprains, strains, torn muscles. On the 4th visit, and after visiting my family physician, who refused to give me any sort of pain medication, and simply wrote a couple of referalls to a pain mgmnt. doctor, and physical therapist. I was sent home to suffer. I returned to the ER with my severe pain after that visit. The hospital said they were "concerned with my repeated visits for pain relief" after calling my physician to find out why he would not prescribe pain meds and valium, and they ended up giving me ibuprofen. I was so irritated. I'm tired of doctors thinking every person who comes into the ER with pain is a junkie.

A day later I began urinating what looked like pure blood, with clots the size of a quarter and bigger. I took a sample of the bloody "urine" back to that doctor who had flippantly blown me off, and finally got a referral to the urologist, and antibiotics.

Thank goodness for my urologist. I got a diagnosis, although the procedure was painful, and relief.

[emilyrose197377]

^Whats that? Pottassuim senstivity test is plain torture I would recomment cysto and hdro before that Test. It is where they pour pottassuim on your bladder and if you have an reaction to it like severe pain like I did you have Ic. I just had the test Friday and it sent me into a flare even though they rinsed out the pottassuim and put lidocaine in to numb it.

Take Care
Kim

[vm]

The potassium sensitivity test, as with other procedures, affects different people differently. If you have IC you generally react negatively to the potassium solution instilled into your bladder, but then once they put in the rescue fluid you are OK. Some people have a stronger reaction and don't feel good afterwards for some time.

Basically they instill a potassium mixture through a catheter into your bladder and if it hurts then they generally say you have IC. If you do not react they often say you do not have IC.

[patricia1]

Personally and this is my opion only a Potassium Sent Test is alot safer than the cysto/hydro. Due to the fact that anthesia is involved and so forth and sometimes it takes a little longer to get over. I have had both. I had the PST test first then the hydro/cysto later and for me the PST was easier to do. Like VM stated people react differently but usually once the resue meds are install you are OK.

[emilyrose197377]

Yes I agree it depends on the person I know I had a rescue solution and I am not fine. I am in a full blown flare the pottassuim sentivity procedure has done to me. Just my opinion but I came back in worse pain than I was in before the procedure .