Diagnosis Update

[med_head_09]

For those of you that have read and responded to my recent posts, I was diagnosed yesterday with IC. My doctor said that my symptoms alone and the physical exam were enough to confirm it for him. He said I could do the potassium test if I wanted, but he didn't think it was necessary, and I can just barely tolerate peds catheters, so he said it was not necessary to put me through that. He is going to start me on PFT, because he says my pelvic floor dysfunction is horrible. He also asked me to participate in the clinical trial going on right now. Is anyone participating in the pelvic pain study? Any adverse affects? I am slightly concerned about getting the placebo and having to wait 8 weeks to even start actual treatment, but I am all for helping out the cause and giving it a go. He suggested Elmiron if i do not want to participate in the study, or for after I am done with the study. Does Elmiron help the frequency and urgency for anyone?? That is my main concern. Thanks for the support, and I am sure I will be poking my head around here much more in the future!

:toilet: Definitely feel like this is me most days!

[icjen]

:hi: & :welcome: Sorry it had to be IC, but glad you got a dx. As for the study, I'm not sure how I would feel either, I've never been asked to participate yet. But, anything to help with getting better treatment or finding a cure is fantastic.
Elmiron has been great for frequency and urgency for alot of people. As for me, I think my bladder is very slowly coming around. It's not better yet, but not as bad as it once was. I've been on Elmiron for a little over a year. For many people though, effect have been felt much much sooner!
Hope to see you around the boards and wishing you better days soon!
Jen

[Katrina]

I don't think I would be interested in a study that treated only Pelivic Pain when I have IC. I personally think that a treatment that works on helping to heal the GAG layer of the bladder should be tried. I would be more willing to participate in the study as long as we treated the lining of the bladder too. Does Elmiron help the frequency and urgency for anyone?? Sure...it treats the problem of IC...so it treats most symptoms that are all related to IC. The problem is ...as it is with all treatments of treating the GAG layer is they take time to work...months usually. What can help make this faster is to do the installtions....Elmiron or Heparin. It works faster!

Since it is very possible that many of your symptoms are PFD related too treating the PFD is still very worth it.

That is just my thoughts.