Need Help. Very Confused.

[alh]

Does anyone know anyone with IC for sure that both tested negative with the Potassium Test and had a healthy looking bladder with the csyto? I am confused because both of my tests came back normal besides the fact that my bladder while I was under was slightly smaller than avg about 850cc. My urologist is still telling me she thinks I have IC and has but me on all the meds. My symptoms the constant urge to urinate, vaginal irritation and back pain. My bladder never feels empty even when it is. I know it is emptying because I have had several bladder scans at my urologist. I think the feeling is from by pelvic muscle that are in spasm. What do you guys think. I know you are not doctors, but do you think it is probable that I do have it. Should I get a second opinion? Thanks in advance for any advice. Also how do you keep a positive attitude. I am having a very hard time, I think I will never have a normal life again.

[Dixiefireball]

:hi: and :welcome: to the ICN. I feel that anytime we don't believe in what a doctor is saying then YES we should seek an second opinion. Yes its true that sometimes that our bladders doesn't show up pinpoint bleeding nor hunners. (not all icer has hunners)
does spicey foods are drinks like cokes, pepsi, tea's, alcohol brother your bladder?
the csyto your doctor done was it in the office or was it a hydro/csyto that they do in the O.R?
you can read more about IC at www.ic-network.com/handbook you will also find the IC diet there. You may be in the early stages of IC and your doctor caught it. some doctor do dx IC now by just systoms alone.
please let us know what you decide we are here for you and we do care.
Rhonda

[Sarojini]

If you are not comfortable, then definitely seek a second opinion! It's definitely possible to have IC without pinpoint bleeding after hydrodistention; there are others on the boards that have had this, but responded well to traditional IC therapy. Good luck, and let us know how it goes! :grouphug:

[alh]

Thanks for the reply. She did a cysto with hydro distention in a hospital. I do not seem to have any flares with spicey foods or soda. I do notice it will get worse if I add sugar back in my diet. But it takes a week for it to bother it. I cut out sugar after I went to a homiopathic doc who told me it could be fungis overgrowth in the bladder that does not show up on tests. Sugar apparentley feeds the fungis. Stress is a definite problem for me, it gets really bad when I am stressed. What is your feeling about a negative postassium test?

[theoutlaw77]

Since there is no one test that is one hundred percent accurate for everyone, I think that it is possible that you could have IC and have both test come back negative. A lot of people with IC are diagnosed by their symptoms alone (and the abscence of other problems- which I am guessing that your doctor has already ruled out- ex.- ovarian cysts, endo., over active bladder...) If there is nothing else going on, maybe you should try the therapy for IC (diet adjustment, Elmiron...) and see if you feel better. Hope you do feel better soon!! Oh yeah, did you have a biopsy done with your hydro/cysto? Sometimes that will show inflammation.

[dolphinfire]

My urogyn specializes in ic and he said that the diagnostic testing they do is not 100%. I agree with everyone else though, if you feel you cant trust your uro, get a second opinion. Good luck :welcome: and lots of :grouphug:

[diane57]

Interesting that you mentioned the "pelvic muscles that are in spasm." PFD (I think it stands for Pelfic Floor Dysfunction, but not sure - there's a forum for it here on these message boards) can cause almost all the symptoms of IC. I know I"ve read some posts of people initially diagnosed with IC, but it turned out they had PFD and once they got treated for the PFD they felt much better. And I think most uros are not qualified to diagnose PFD. You might look for a physical therapist that specializes in pelvic pain, to be evaluated for PFD. I think the treatment for PFD is physical therapy, sometimes hot baths, muscle relaxants, and it seems to respond well to treatment.

[vm]

Yes, MelanieJ who used to post here and is a moderator had negative results from both those tests, if I am remembering correctly. I believe you can still PM her - if you search the Member Directory for her name you'd be able to do that. She's wonderful to talk to. :)