Idiopathic IC

[jdlake131]

I'm complete IC since I was a very young child. I was never been able to potty train. And I wear diapers ever since. I don't know anything else. Of course it's been
difficult but I do know it's been a normal thing for me. I've always been in diapers. Growing up as a kid my mom was always changing my diapers. Even as I got older. I've been changed for one of my sister, babysitters and teacher aides. I finally became independent enough to change myself. When I was young I knew i was diapered while other friends and students didn't wear diapers like me. I was frustrated and confused. I think I was around 8 or 9 when I heard a doctor tell my mom that they just didn't know why I was IC but they did suspect. I didn't understand it until I got older. They called it idiopathic IC. Which means it is "unknown." When I went to the doctors I would ask why I had to wear diapers. Why was I always wetting and messing my diapers. They never answered my questions. They just said that IC was complicated. By the time I was jr. high school I became mostly introverted. And I still am. I do have a few friends, my family and I do have a girlfriend.
Being IC is really a struggle. Life is what it is. Whether I know why or not knowing is frustrating. I know it won't change anything. I do know that I'm not alone. Are you idiopathic IC too? .

 

[slimjiminy]

No, I am not idiopathic IC.

But you've mentioned introvert a couple times recently as if it is a problem. Introversion is not a problem or defect. Some people like you and me are introverted, while others are extraverted. My wife is right in the middle as an "X" type. There's more to personality types than that but that is the one major category. Look for a free Meyers Briggs test online if you've not done one before.

If you're assembling a team of people you want introverts and extraverts. Both add value to the team in different ways. The introvert thinks about things more deeply, while the extravert can arrive at quick answers and be good at selling the project or idea.

Years ago I used to think that being an introvert was something I needed to overcome. But I found out that it's not a problem but rather a feature. Introverts are especially suited for mathematics and computer science for example. There are good books available on the subject and worth reading if you want to know more.

 

[jdlake131]

I understand about being an introvert person. I'm quiet and shy but I do know I'm friendly. Being an introvert isn't bad. It's just how I am. I well know everyone has there own personality.

But being idiopathic IC is what I'm talking about. Doctors are unable to nail down what causes it. They knows what the symptoms are. They know I have severe urgency during the day and I have no control while sleeping. I don't have any IBS symptoms. I've never been able to potty train My mom has tried (Including myself). I'm in diapers 24/7 since the beginning. I'm just wondering if others have this too.

 

[greatlake5]

I don't want to discuss the causes of my own IC. First it's irrelevant. Second it's private. Especially if I know the causes. Suffice to say that I see my doctor regularly. My condition is "steady." But I do understand why you want to know "why." It must be frustrating. I was told it was congenital. So it doesn't really help. Maybe you should focus on management.

 

[CheshireCat]

I have an extremely rare genetic disorder with only several cases documented before 2005. At 39 my genetic disorder went into overdrive, which started my bladder incontinence and retention. A few years later I was diagnosed with a neurogenic bladder. At 54 was when I diagnosed with the genetic disorder, so from the age of 39 to 54 I was misdiagnosed and gaslit numerous times by medical professionals, because THEY didn't have correct answers.

At 55, I attended a conference for the family of genetic disorders mine is associated with. During a Q&A I asked two questions: why does the disorder cause severe muscle pain and why would it affect the bladder? The head researcher responded that there is no muscle pain or incontinence associated with this family of disorders; I have been misdiagnosed. The president of the association putting on the conference, also a doctor and also with a similar genetic disorder, jumped up and asked for a show of hands of those who experience pain. 90% of the patients raised their hand. 25% raised their hand in regards to incontinence. Medical professionals didn't have correct answers.

At 64, I found out I've had a neurogenic bladder all my life. Somehow when I was young I figured out how to stay dry and pee on command using other nerves and muscles. Because my alternate methods were not as effective as normal, I had a history of minor accidents, which I chalked up to being my fault.

If I had been diagnosed with my genetic disorder as a child, there would have been a level of expectation of what would occur through life.

My point is, sometimes it takes a lifetime to get answers.

Idiopathic double incontinence is a neurological disorder. There are specific nerves that don't work, and in your case it's probably congenital. For your doctor, running tests and scans to find the exact place where things breakdown is irrelevant, if there is no option to fix it. Frustrating for you, but how much testing would you be willing to go through to find out what you already know? My real question is, have you ever seen a neurologist to find out what else may be affected? A simple neurological exam may show you are absolutely normal in every other way, or may show that you have some other weakness or numbness that you've never even thought about.

 

[Milianna]

I have OAB. The cause of this OAB? Idiopathic.

I really don't care what the cause is. I've gotten scans and poked and prodded up and down. There's nothing wrong with me except my bladder is screwy. So really, I just don't really care about the cause of it as long as it isn't going to do something like lead to some bigger problems down the line.

Again, Cheshire cat has some good points in your case.

 

[Deleted member 49306]

Sometimes we stare at a problem head on and never see a solution, but as the problem passes in front of us we see what drives it.
ie…you can’t see the treetops while in the forest, you have to step into the field to see them touch the sky.
my neurologist explained why I was ic, while the urologist I had seen had no clue.
always look at issues from different angles you’ll at least learn something.

 

[NappiedTruckDriver]

I have OAB. The cause of this OAB? Idiopathic.

I really don't care what the cause is. I've gotten scans and poked and prodded up and down. There's nothing wrong with me except my bladder is screwy. So really, I just don't really care about the cause of it as long as it isn't going to do something like lead to some bigger problems down the line.

Again, Cheshire cat has some good points in your case.

I may be the same then as I’ve no obvious health issues , fluid intake doesn’t affect how much I pee in the morning ( most mornings 7/8 time before midday ) then it will settle down in the afternoon and ramp it’s self up if I’m watching tv in the evening and I’m relaxed
so now I go off for 3 diaper changes rather than 15 times to the toilet , I’m a truck driver so that was an other factor in my discion