Thanks @Indy51 - I did see this posted in my IC community pages. It looks promising. At this stage though they do not know the cause of interstitial cystitis (and my current urologist prefers the name Painful Bladder Syndrome). There's so many thoughts about the possible causes and studies that have been done and still being done. I put my name down for a study here by Prof Marshall. They will start Stage 2 of the study soon and will contact the patients with the condition, the first stage was studying healthy people. He was the one that discovered h-pylori so he may discover something re: IC or perhaps may add to this study in this link about whether there is an actual infection undetected perhaps that causes it. I know for me I've had no relief from it since it started in 2013. I'm now seeing 2 physio's to help treat me for it... one for the pelvic floor and the other for the bladder. It's a tricky thing to manage. Also having diabetes doesn't help as not only does that put me at risk of UTI's, but so does the retention the condition causes and the use of catheters. I have had 2 different infections in a row for weeks now. I'm still on cephalexin. My sugars are still quite high and I'm almost doubling my bolus insulin and still getting high readings... just crazy. At least with diabetes it is one of my indicators I have a UTI when my sugars go crazy as without that I just wouldn't even be able to tell as I live with permanent UTI symptoms. I'm being told I have to increase the use of catheters as it is part of retraining the bladder... although it also puts me at risk of UTI's. ugh. They say the first infection I had (a few weeks back) was from the catheters so I stopped using them waiting for infection to clear. I go for another test to get the all clear only to find I have a different type of infection... my guess is from the retention and high sugar levels. Everything working against me really... makes it hard. But I like seeing studies like this as gives some hope they may uncover things and find effective treatment. I've chatted to ladies who have lost their bladders over this disease... it progresses like diabetes can progress. One day hopefully we'll see a cure. Sorry if I'm rambling here... a bit exhausted. Thanks again.
PS. with IC they can't find an infection when they do a lab test, they just find we have high leucocytes and/or red blood cells. I started out with just the high leucocytes every single test which is unacceptable.... but in the past year I now have red blood cells also. About 9/10 I get told I do not have an infection but I have an abnormal test because of the blood.... that's the usual for people with IC though. When I do get UTI's I seem to get a bad run of them, then I get a long period of time without them even though carry on doing the tests to check if I'm ok. At no point am I symptom free though, even on antibiotics which they find I have an infection.
