Prevalence of idiopathic IC symptoms

[eastcoastdl]

As I was changing my diaper this morning, I was wondering about how many people have no direct causation identified for their IC sysmptoms. I know that I've had urologists say there's a high incidence of when you have bladder problems when younger that they'll return when you get older (pretty much just saying "well there's your problem" without further delving into the actual cause), or just testing for the obvious handful of causes (diabetes, MS, etc) and when they all test negative just shrugging, putting you on a rotation of prescriptions that likely will have little or no effect and moving on. If that's life as a uro doc it sounds pretty unfulfilling

Perhaps some people here can chime in, is it a small percentage (such as under 10%), a decent amount (~33%), or greater than 50%? Clearly not an objective study but more of just a feel from the crowd here - who has a known root cause of their IC, and who is left wondering why they uncontrollably pee?

 

[perlFerret]

My uro correctly identified that my very minor leaks were due to me unconsciously tensing my muscles due to anxiety and prescribed yoga and meditation. He was right and it worked. But he never did any urodynamics or anything other than a pelvic ultrasound, DRE for possible prostate issues, and a blood test.

 

[slimjiminy]

Perhaps you should create a poll. My IC is due to diabetes nerve damage according to the doc but there is otherwise no smoking gun.

 

[CheshireCat]

Genetic issue causes my bladder issues and cancer treatments changed it up.

 

[tiron101]

I have overactive bladder all the way back to being a kid, that gradually led to episodes of incontinence. I also have a couple weird symptoms along with some of the episodes, that he couldn't explain.

A while back I did get the whole thing about having problems when I was younger too. He said it's not uncommon for childhood issues to show up again. Kind of like once a weak system, always a weak system. When you're young and healthy your body can deal with it, but as years go on, it kind of creeps back in. First it was bedwetting, then daytime problems.

After tons of tests and medications nothing really ever seemed to help much. If anything it made things worse. I haven't been to the urologist lately though.

 

[LordDuque]

Well, in my case yes I do have an objective reason while although I haven’t the diagnose of the urologist’cause to have it you must do a bunch of proofs some of them quite uncomfortable for something it’s 100% like it is (traumatic spinal injury) so I actually it’s needless. So why should I? They gave the points for my disab without it cause it’s that obvious . Well, cheers guys!

 

[Teddy02]

I have overactive bladder all the way back to being a kid, that gradually led to episodes of incontinence. I also have a couple weird symptoms along with some of the episodes, that he couldn't explain.

A while back I did get the whole thing about having problems when I was younger too. He said it's not uncommon for childhood issues to show up again. Kind of like once a weak system, always a weak system. When you're young and healthy your body can deal with it, but as years go on, it kind of creeps back in. First it was bedwetting, then daytime problems.

After tons of tests and medications nothing really ever seemed to help much. If anything it made things worse. I haven't been to the urologist lately though.

This is, kind of, my problem. A bedwetter as a child, never a dry night until I was 12. The doctors said the inevitable ‘he’ll grow out of it’, well the bedwetting continued at boarding school, just less frequently, and returned at about 24/25 years old, to every night. I had loads of tests that proved nothing, but when I asked why my bladder seemed to go into overdrive at night, I was told it was a throw-back to my childhood. The trouble was that by then I was enjoying the comfort and convenience of nappies especially as puberty kicked in and they became part of my first sexual experiences. The pain/pleasure, love/hate, syndrome was hell to deal with at the time. Telling a girl that you have to wear nappies was tough!!!
After my prostate operation the whole thing became (publicly) legitimised (although I had legitimaised it to myself long before that. But the surgeon was surprised that I was not worried about the incontinence!!

 

[mickdl]

When it started, it was a bladder lining problem, now it's the prostate... I'll probably have it operated on in a few months - let's see if it gets better then. Statistically, it probably works in three out of four cases. Maybe I'm lucky.

 

[Eclectic]

I have overactive bladder all the way back to being a kid, that gradually led to episodes of incontinence. I also have a couple weird symptoms along with some of the episodes, that he couldn't explain.

A while back I did get the whole thing about having problems when I was younger too. He said it's not uncommon for childhood issues to show up again. Kind of like once a weak system, always a weak system. When you're young and healthy your body can deal with it, but as years go on, it kind of creeps back in. First it was bedwetting, then daytime problems.

After tons of tests and medications nothing really ever seemed to help much. If anything it made things worse. I haven't been to the urologist lately though.

This is similar to me. I’m glad there are others like me on here as I sometimes feel like I’m a rare breed.

The main differences from Tiron’s account is I’ve had both bladder and bowel IC off and on since birth. And, a “little” personality so my family has always assumed that my desire to be diapered was more of a choice than a need. Diapering has been a love and hate thing, but I slowly accepted it in my 20’s and 30’s as my IC got much worse.

I have some other neurological glitches, including involuntary muscle spasms in my face, arms and legs, but despite being tested multiple times my doctors just throw up their hands and say they don’t know why my nervous system malfunctions. Also, the drugs don’t cure you, they just manage the spasms and give you a host of other unpleasant side effects, at least in my case.