Answers, but no resolution. Formal diagnosis?

[michael_dahlke]

Yeah, I feel pretty defeated again with the whole deal. Generic label of Neurogenic Bladder without a observable cause seems unsatisfying.
CG

Hello CityGardener,

this is indeed a bit strange. Usually a neurogenic bladder is linked to MS or diabetes. A urologist is usually not able to properly identify nerve damage - which is why a neurologist is called in such a case. Has this diagnosis been determined by a neurologist? If not - I would recommend having it confirmed by one. If the neurologist does not find a problem here, it means that it is most likely not just a "generic neurogenic bladder" but that something else is probably causing the problem.

If diabetes is the cause and your BMI is over 25, you may be able to improve your situation just by lowering your BMI. Also, the treatment in such a case is more or less the same as for OAB. So it might also be an idea to check what you eat and drink, because if you avoid drinks like coffee or orange juice, this can also improve the situation.

I completely understand your frustration and also that you are not happy with the 80% chance - I wasn't either. But looking back, I can say that having almost no bladder control, as was the case for me when my problems started - or having only one or two accidents a day makes a big difference. Sure - yes - it's frustrating, but it also means you can wear lighter protection, you have fewer problems with skin irritation, and I can tell you that finally getting some control back has been huge for myself, too.

So I would encourage you not to give up so quickly. Try to find - and if possible, fix - the root cause. It may turn out that it's not really possible, but it's worth a try.

[CityGardener]

this is indeed a bit strange. Usually a neurogenic bladder is linked to MS or diabetes. A urologist is usually not able to properly identify nerve damage - which is why a neurologist is called in such a case. Has this diagnosis been determined by a neurologist? If not - I would recommend having it confirmed by one. If the neurologist does not find a problem here, it means that it is most likely not just a "generic neurogenic bladder" but that something else is probably causing the problem.

Hey there,
Thank you for thankyou for taking the time to write that bit of encouragement and advice.

I had to go back and read my original post. Yeah, that was a crumby day. I suppose I've had some acceptance since then, but still haven't really gotten any further with finding a root cause. I've even since met with the specialist at the Urology clinic I've been under the care of this past year. We talked options for having (more) control. There is Botox, and Interstim. Botox didn't seem like something I'm really down with. Interstim sounds pretty promising though. You can also test the device before getting it fully implanted so I don't see a downside. It may not work on me, but if it does, I could (like you say): have fewer accidents and use lighter protection. From where I'm sitting now that sounds totally reasonable. If it turns out to be a miracle cure then I'm free. I'm going to continue breathing in the meantime though.

As for the cause of the neurogenic bladder, I don't really have that pinned down. It's concerning to me that I seemed to lose alot of control over a short period of time, but I've had an overactive bladder since I was an early teen but I could almost always make it to the bathroom without issue. The explanation I got from the Physician's Assistant who did most of my interview and consultation was: "We don't know why this happens to people. It's developmental. Somehow things weren't figured out when people were potty training, or something, and they get older and here we are now. " While I don't completely buy that, and found that advice dismissive, and kind of insulting, there's really not much I can do. Treatment for me would likely remain the same regardless of further tests or diagnosis.

Great advice about diabetes or other nerve disorders. I've had my blood sugar checked regularly and I'm not at risk for that. Diet is something I've paid more attention to more recently in my life. Caffeine is definitely a bad idea for trying to have a drier day, and avoiding it does help some. Staying hydrated is good too, I shouldn't avoid liquids but sometimes I still do. It's a habit that I've had for a long time to minimize trips to the bathroom.

Thanks again.

[greenbank]

Hi CityGardner

Incontinence is so infuriating I have no real cure so for me I have sadly had to accept that I have urge issues and that’s it. I probably have not shared this as have put a brave face on it but my issues started when I was a teenager when I suffered an appendicitis that burst and was wrongly diagnosed this delay caused irreversible damage to my bladder and ever since have been managing urge incontinence and today I wear diapers 24/7. I could get very angry but there is no point as nothing can be done. I have adopted over time that yes I do have incontinence but incontinence does have me with proper management and hygiene I am in control. My life is not dominated by my urge modern diapers and incontinence clothing swimwear/onesies are great and allows me to do everything I want to in life!

I don’t loose hope for science to help me one day but there are a lot of people in a far worse situation than me.

Greenbank

[CityGardener]

Hi Greenbank,

Thanks for sharing. It really is helpful to have to have folks that relate to. And yes, urge IC is frustrating, and infuriating to deal with. Totally agree.

I don't think I'm really angry about the facts anymore. Most days I just do my thing now. There are probably moments that I get a 1000 yard stare if I allow myself to think about it too much. There's much worse things though. I have all the options and answers I'm probably going to get so there's no use in feeling sorry for myself about it. Do I still wish I was normal? Sure, but I'm not so it's whatever. Big thing now is to build up my self esteem, and not let myself feel inferior to others because of this. My bladder is inferior, I'm not. Along the same line: trying to not feel embarrassed when I need to change at work or in public is something I need to continue to work on.

Thanks again,

[JDavis]

Hi CityGardner

Incontinence is so infuriating I have no real cure so for me I have sadly had to accept that I have urge issues and that’s it. I probably have not shared this as have put a brave face on it but my issues started when I was a teenager when I suffered an appendicitis that burst and was wrongly diagnosed this delay caused irreversible damage to my bladder and ever since have been managing urge incontinence and today I wear diapers 24/7. I could get very angry but there is no point as nothing can be done. I have adopted over time that yes I do have incontinence but incontinence does have me with proper management and hygiene I am in control. My life is not dominated by my urge modern diapers and incontinence clothing swimwear/onesies are great and allows me to do everything I want to in life!

I don’t loose hope for science to help me one day but there are a lot of people in a far worse situation than me.

Greenbank

I share your frustration. I got it at 19.

[wayne]

Incontinence is so infuriating I have no real cure so for me I have sadly had to accept that I have urge issues and that’s it. I probably have not shared this as have put a brave face on it but my issues started when I was a teenager...

I share your frustration. I got it at 19.

It must surely have been frustrating at an early age (I can only imagine). That makes me thankful for the 6 decades of continence I did enjoy. But many would agree that it is still not easy to accept at any age. I have no hope of a cure either (diabetes nerve damage).

Yet, we all have to get to some level of acceptance eventually and carry on with life. I found that letting my immediate family know about my condition relieved me of the burden of secrecy. My oldest was very positive stating she would be glad to still have her father around even if he has to wear diapers. The others were also accepting. Time has a way of allowing the reshaping of our normal. I still have other acceptance issues but I am working on that.