www.incontinentsupport.org

Good morning everybody,
I have been doing some research and I cannot find a clear answer so I wanted to pose this question to the group and perhaps there are some more seasoned veterans that I that can provide some insight. As most of you know I've been dealing with bladder issues. I have urinary frequency (still 15x25+ times per day) urinary hesitancy, urgency, and while I'm always able to hold it till I make the bathroom, I ALWAYS leak AFTER I go. Sometimes quarter sized and sometimes larger spurts. I wear protection 24/7/365 pads/pullups/diapers depending on the day. I've had cystoscopies, amd urodynamics exams, MRI's, prostate exams, neurological exams, on and on. I've also tried 4 of the anticholinergic meds, none of them worked. One seemed like it was working then abruptly, it wasn't. I'm not in any pain, and I've never been told until the last week or so what any of the doctors thought it might be. I've been dealing with this since late February/early March 2014 so going on a year and a half.
Recently I've come to believe that this is interstitial cystitis, though I don't have pain, many of the symptoms fit very closely other than the severe pain part. Now my urologist is telling me finally after nearly a year and a half that he thinks this is OAB. I'm leaning away from this diagnosis largely because during the urodynamics test, my detrusor (pelvic floor muscles) was rock solid throughout the exam and the findings were unremarkable, the cystoscopies were unremarkable, and the urinalysis have all come back unremarkable (all like 15-20 of them) so I'm posing the question to you guys......
Can I still have OAB and have "stable detrusor muscles" ????
Or does it sound more like IC where you have many unremarkable exams/tests procedures? Check
You have urinary frequency, hesitation, urgency? Check
It all gets worse when you're overtired or stressed out? Check
It's irritated by certain food/drinks? Caffeine, soda, alcohol, lemonade? Check
Patients with IC have been told that it's all in their heads? Check
IC and OAB share the same symptoms but are difficult to differentiate......check.....
Anybody have any thoughts on this? I figured it out on June 10.......I'm still trying to get to see a doctor to confirm it. My regular urologist just wants to do Botox and be done with it.....I'm not so sure. he really doesn't know much about IC, as most doctors don't. I got a referral to see a different (4th urologist) to see what he thinks about my IC theory, but he schedules a month out and he's an hour+ away. I need the wife to go with me as she is a nurse and can help explain things, plus I get in there and forget easily. So she keeps me on track. But trying to get our work schedules lined up with childcare for the day has been next to impossible and causes me anxiety just thinking about it.

PB&J32,

Your guess of IC could be on the right track. My experience with Botox injections, although more than a decade old, was that, although the first injections lasted about six months, succeeding injections wore off with less and less time. By the spring of 1999, the injections were lasting less than six weeks, making the sphincterotomy necessary to protect my kidneys. I have since read that the botulinum toxin can migrate from its injection site to remote (!) parts of the body, which could be disastrous, depending on exactly where it ended up. Good luck.

I'm leaning away from the Botox, reason being that you have to be willing and able to self Cath. I am a foley user but my wife is putting them in. I don't cath myself, I find the thought of it makes me weak in the knees. So, if it went the other way from 15-25 times per day, (as in, I couldn't pass urine at all) I'd probably just end up with a foley anyway because we have the stuff at home.....so what would it really change for me?? I'm already using the Foley catheters and seem to be able to get along ok with them, though I don't take them to work......she takes it out and I go to work for a few days then she puts it back in when I get home and have a few days off so I can sleep and catch up on rest. Anyway.....I'm not sure it's the "cure" I'm looking for. Plus I really don't yet have a concrete diagnosis......is it IC or is it OAB?.....I'd like to dig deeper before I settle on a course of action like Botox, which has some serious side effects. Not that Foley catheters don't have their downsides, but they have been well tolerated by me with only a single UTI in 13 months of a very Frequent catheter use. Thanks for weighing in, Patrick!!