I am wondering where we can get information ,data,& other details of the ongoing results or pending studies & post them on the message boards.

Can we add one more category that we can posts reasercher's ongoing study? I like to see them in an open discussion here for us to give our input ,suggestions,or criticism openly.

It got me thinking again about what I believed as a description, not a cause, of this disease. If indeed the lining of our bladders are defective, & supposedly iit is filtering waste products to be excreted in the our body & instead get reabsorbed back to our system,don't you guys agree that since these toxic wastes that is supposedly eliminated is incorporated back to the main bloodstream,I figured this is why the reason that it manifests in other parts of our body such as migraine headaches,UTI,Vulvodynia,IBS,colitis,
muscle pain ,sinusitis,etc..etc...And guess what is one thing in common of all these affected organs ? They are all have lining similar to the one in our bladder.This is the reason why i am so enthused to know if any of the reasearchers is noticng what we are noticing as the sufferers. I think if these researchers can allow us to gave our input in the study I think the cure is on top of our fingertips.
What is really bugging me that they ( the research study is not open to the public) & I have a hard time understanding which is affected that is causing the breakdown of the filter in our bladders. It is easy to say,actually I find it like it's a hearsay & no merit the explantion of these doctors,that the bladder lining is not intact.Why? They had no clue which is affected ,the intracellular plasma or is it the plasmalemma that unite each cells to another layer of cells. When I started to get into this details my Uro will just said it is not clear. I am not asking of what causes it rather than which is affected inside the cells or outside the cells.It is very very aggravating.....Mind you guys that Uro's does not have much knwoledge about histopathology rather than pathophysiology of the disease. there is a big difference.

The least we can do to this board is open another category that each in everyone of us can share input of what kind of theory is out there how many of them out there,& what would we feel about it. We should have a voice in every study or they are just wasting our tax dollars.And as the sufferers we keep on waiting of something that probably is out of context study. I haven't seen any reasearcher that come to this board nor in the ICA that asks the opinions from us.

Asking for our opinions will bring tons & tons of information that will benefit the reasearh & in the short run find the cure quicker for us.

Lets gather our ideas & maybe find a research group that will include datas from us.What you guys think?????

Just a very annoying thought ......
Li