I’m confused and lost

Cammer

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126
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  1. Incontinent
I’ve been dealing with my bladder not listening and acting on its own since I was young, i wet my pants bad and the bed until I was 12 or so, then when I was in high school my bladder problems came back following a uti, I went to a dr who gave me a few different meds but it didn’t help, I struggled with it for a while and finally “got it under control” on my own. The next years was rough, I felt like I was constantly watching what I drank and tried to drink as little as possible. I was anxious about it and it fed my other anxiety and depression. About 6 months ago my bladder started acting up again and its only getting worse. Some days I am constantly peeing my self and others I get pains in my sides and I can’t get anything out. I was to the dr. But he wanted me to try time voiding, which hasn’t helped cause I feel a complete disconnect with the control over my bladder. I guess my question is why this is happening to me. My urologist hasn’t given me any indication of the cause just “solutions”. I know everyone is different and I’m not trying to compare my self to anyone but looking around, everyone’s ic is from birth or an underlying condition. But my ic just seemed to kinda appear and is just getting worse. What could this mean
 

joemama

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Sometimes, like in my case, they never really know and cannot tell you why it happens. I have been through the gambit of tests, drugs, offers for things like botox or the shock box for nerve control, and psychological mumbo jumbo. Noting helped so in the end I learned to live with it and diapers. It is not that bad once you get it figured out, it is just different underwear. There are some great sites like NAFC.org if you are looking for honest help with incontinence without the other aspects of conversation found on ADISC.
 
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Cammer

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joemama said:
Sometimes, like in my case, they never really know and cannot tell you why it happens. I have been through the gambit of tests, drugs, offers for things….
Thank you, I’ll check out that site. And yeah it was intimidating when seeing the urologist the first time on my own, he threw a bunch of stuff like a peacemaker for my bladder or meds ( been down that road and don’t like taking meds and worry about the long term effects Let alone the side effects upfront ) and talked about surgeries I do not want. It was honestly scary.
 

CheshireCat

Neuromuscular Disability
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@Cammer I believe you need to think more objectively about your situation. Look carefully at what you wrote:
I’ve been dealing with my bladder not listening and acting on its own since I was young...
...i wet my pants bad and the bed until I was 12 or so...
...when I was in high school my bladder problems came back following a uti...
...finally “got it under control” on my own.
The next years was rough, I felt like I was constantly watching what I drank, and tried to drink as little as possible.
So, except for a couple of years during junior high and high school you have been dealing with a dodgy bladder all your life.

...looking around, everyone’s ic is from birth or an underlying condition. But my ic just seemed to kinda appear and is just getting worse. What could this mean
Your IC didn't kinda appear; it's always been there. But it's gotten much worse now.

Some days I am constantly peeing my self and others I get pains in my sides and I can’t get anything out.
Sounds like a neurogenic bladder, which also falls in line with all of your above statements. Pain and not being able to pee is never good. A urologist needs to know about this.

Sometimes the desire to be normal causes us to "stretch" the boundaries of normal, so that we fall within the boundaries. Your bladder experiences growing up were not normal. But if you were able to successfully conceal the pants wetting, bed wetting, constant treks to the toilet, etc., then no one thought of you as not being normal, therefore you were "normal."

I hope you get some answers.
 
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Pino

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CheshireCat said:
Your IC didn't kinda appear; it's always been there. But it's gotten much worse now.
Sounds like a neurogenic bladder, which also falls in line with all of your above statements. Pain and not being able to pee is never good. A urologist needs to know about this.
This is a very important point, when your urologist has got no interest in finding the cause, go to a new one.

I personally needed five (!) urologists to find one who really looked for the reason and at least could find that my problems are "real" and neurogenic nature, where exactly it is coming from is still open to some point, but i think it is important to know the underlying cause as good as possible.

Incontinence is a symptom not the illness. My incontinence varies a lot, depending on my pain in the bladder, my cramped pelvic floor, my lower back back pain and my dysautonomy and the severity of my ME, which differs every day.

You see, there are many different reasons that can have effect on my bladder, but i do know them all, even if can not chance much of it, it helps to know.
 
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