www.incontinentsupport.org

I can start by saying I'm lucky in many ways. Lucky that there is no cancer, no nerve damage that will affect the rest of my body, and that I'm only affected by bladder incontinence. But for all of tests I've undergone the last few weeks, I have no real clear path to solving the issue.

My doctor gave me the diagnosis of Neurogenic Bladder, rated severe. My bladder can only handle about 1oz of liquid before it decides it needs to "go crazy" . Anticholinergic medicines will not be effective on me, and I was even encouraged to go ahead and stop taking them. (Oof). My future outlook is that I can get "80% better with treatment" Innerstim, and Botox are my "options". He also forwarded my case on to his partner who is a specialist in bladder dysfunction. (I thought Urologists WERE specialists in bladder dysfunction).

Maybe I should feel happy that I have a more clear picture, and a prognosis, but I really don't. This feels like a death sentence. I am NOT content to live my life in diapers! I don't really know what I was expecting, but I think I had the feeling there was somehow a way out of this still. I'm facing the full extent of the reality right now. This is extremely uncomfortable.

This has all happened way too fast. I went from relatively small accidents that I could deny were actually happening, to nearly complete bladder failure in less than a years time. It is a complete lifestyle shift, and I honestly wasn't fully expecting this to be permanent. I haven't really traveled, or been doing the things I like much, due to covid, and the cold season weather, but just thinking about how I will have to fit this into everything I do from now on is irritating.

Yeah, I feel pretty defeated again with the whole deal. Generic label of Neurogenic Bladder without a observable cause seems unsatisfying. However, I am thankful for the health that I DO have. Overwhelmed, and depressed again.
Ok, end rant.

Thanks,
CG

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Thank you kindly,
CG

Good morning!
I know that you feel depressed and defeated now but I know that you’ll work through it based on the little bit I know about you here. You may be able to return to your near normal with meds, surgery, or other treatments but various levels of incontinence shouldn’t become a life changer unless you allow it to be.
Literally, count your blessings!! There are SO MANY diseases and conditions that are so very serious, even life threatening.
In the meanwhile, rant all you need to rant if it makes you ultimately feel better. People here are all willing to listen and offer help to the best of their ability.
I pray that you find solutions soon, but if you don’t, I hope that you can find peace with your condition and move forward with happiness and contentment.

Thanks Ellyn,
I was hoping you'd be one of the respondents to my post if I had any. Agreed. I'm not trying to forget the many, many blessings I do have.

It was unsettling hearing the doctor explain the extent of my issues, and what my options were. The implantable Innerstim deal seems really really intense. Idk. this is all brand new right now, so its is overwhelming.

"Near normal" would be welcomed by me. It's going to be a long expensive road to get there, but it'll be something to look forward to I guess.

I feel really ragged physically too. My bladder is in a constant state of contracting, and relaxing which is hard on the rest of my body. I also have chronic migraines which suck, and cause me fatigue with the pre and post migraine symptoms. I don't really sleep well to top it off.

So it goes...

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Thank you kindly,
CG

CG,
Your description of your symptoms could have been taken from my urologist's notes. One ounce seems about right as the tipping point for leakage for me. I do hope you are not experiencing the excruciating spasms that are a feature of my situation. Dealing with the depression that migraines and incontinence cause is another issue altogether. For me, dealing effectively with my incontinence is both a challenge and a reward. Casual acquaintances and by-standers do not notice? Hooray. I may not be hiding nuclear secrets, but hiding incontinence cam be just as rewarding.

Ha! I got a good chuckle out of that. Thanks!

Migraines suck, but are easier to hide most of the time.

Yes, my bladder does not like liquid hanging out apparently. And no I don't really have any pain. There is discomfort when I am trying to hold it, but muscles give out before it gets painful.

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Thank you kindly,
CG

CG,
I am 73 yrs. old, and have had issues of incontinence for many years. At first, I pretty much ignored the leaking issues, but after several physicals I finally got the nerve to mention it to my doctor. At that time, I was managing by wearing a variety of forms of protection depending on what I was doing, and where I was. Long story short, I eventually developed prostate cancer and had a prostatectomy nearly 4 yrs. ago. Due to my previous bladder problems, I now wear diapers most of the time. Once in a while when knowing I won't be venturing out, I will try to get by with regular underwear...not always successful. After a while one does get use to wearing a diaper. It does take some time. I have done almost everything that I want to do. I have even traveled internationally. Traveling does pose some packing issues, but it can be done. Once when I was in Italy with family, I was running out of diapers, and had to find a pharmacy to supplement my supply. My traveling partners knew of my incontinence. I apologized for the inconvenience, but they saw it as no big deal. I will be traveling to Ireland in the future with a group that do not know of my need for diapers. That will cause me a little more anxiety. I will not broadcast it, but more than likely it will be noticed. As I mentioned, I'm 73 yrs. old. Stuff happens as one ages. So, easy to accept? Not really. Manageable, yes.

Thank you for your thoughtful response dp66.

It's nice to hear that you are not allowing your issues to get in the way of things that you want to do. I haven't done any major traveling since before this became severe for me, and it does cross my mind that that will be much different for me now.

Kind regards,
CG

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Thank you kindly,
CG

This is still the hardest thing for me. Yea I have a diagnosis at this point... Lord knows how long I had to fight to get tested, and then for the results and the diagnosis. But in my case, the diagnosis is more of a side effect of something else that we still don't have an answer for. My GI would not say that I suffer from IBD or IBS even so it is hard to tell non-doctors what is going on with me and how it affects my life.

That is why this year I am willing to seek out second opinions. Fire doctors if need be and not rest until an answer is given.

My big fear is that this is all due to the surgery but I need to know what caused the diverticulitis, abscesses, and perforated bowel that caused the need for surgery.

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Life is like a camera
Focus of what is important
Capture the good times
Develop from the negatives
Take another shot!

ThatFLguy,

Absolutley, 100%. It surprises me how often doctors will just give you the run around when the answer is not easily identifiable with their standard tests. It seems like with some of them, it's a relief that you just give up fighting for answers and go away. I don't plan on being told there's "nothing we can do" I pray that you don't lose the determination that you have now.

I am holding out hope that this upcoming visit with the new doctor i have yet to meet will be willing to dig in and give me some reason for this. I am also sort of glad that the doctor i did see a couple weeks ago forwarded my case on to someone he trusted as his mentor. He was honest with me and told me my case had complexities and that the doctor he wanted me to see specialized in bladder dysfunction and developmental abnormalities. I think I probably made it clear by my exhausted facial expressions, and serious demeanor that I wouldn't be leaving there without some kind of services rendered. I have had a few family practice doctors ignore me or write me prescriptions and send me on my way. To my fault though I only had the guts to bring it up at different points when it was particularly bothersome. After a while it just became a thing I had to deal with. What really made me not pursue any other treatment for my OAB was, yes, the stigma of being a young person with bladder control issues, but also the Urologist i saw when I was 20, who after doing a round of tests, told me (and I quote): "You have a bladder like a pregnant woman. It's ok to hold it. You need to train your bladder." Such sage advice from a trusted, caring professional... My point is, don't let a bad doctor discourage you from getting the healthcare you need.

I am so sorry you have to go through this junk with your current doctors. I hope you stay as determined as you sound in your last post. What your dealing with sounds serious, and even life threatening. If not just quality of life. Find a doctor who will listen to everything you are saying, and if they can't find the answer, at least point you in the direction of someone who can. Please keep us updated. All the best to you on your quest, good sir!

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Thank you kindly,
CG

I get ya, sir. I was diagnosed with Neurogenic Bladder as well and it never felt like a real answer. Just keep pushing through and hope it gets better? Best I can do is be empathetic.

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius