https://arstechnica.com/science/2024/06/to-pee-or-not-to-pee-that-is-a-question-for-the-bladder-and-the-brain/

As the title says I wish to ask to yours about a thing that I do not consider normal, the past year I started to have certain problems with nighttime continence, before at night haven't had to wake up 1 to 2 times to pee but small amounts only if doesn't do that I get uncomfortable pain, besides that can't get in long trips without a diaper on , because I get my bladder full and a pain that only get out when void some and before that doesn't happened that , the worse thing is that have talked about this with my doctor but just said that should limit my fluids intake but it's absurd because if do that couldn't take my nighttime medications.

My question is, this is normal?  should I get worried or get appointment with a urologists?

Best regards

Dotcrawl

im not sure if it matters, but I was born  3 months premature as an identical twin

Decades ago I had a similar situation, and my then-doctor classified it as a type of functional incontinence. Because my legs weren't functioning, I couldn't hold it long enough to make it to a toilet. And that meant I was incontinent. Lol, and that was when I first started wearing diapers 24/7 too.

So that brings up the question. Has anyone else had to deal with this type of functional incontinence? And was it temporary, or permanent?

So over the last few months I've had an uptick in this happening to me, and decided to try and get to the bottom of why it's happening. I went to see a urologist yesterday and had a cystoscopy done. That's where the put a small camera up your urethra to see what's going on. While uncomfortable it hurts less than inserting a catheter.

My doctor was able to confirm my urethra is smooth without any kinks or strictures. So that's a relief. We talked about it for a minute, and came to the same conclusion. That there are some sitting and lying positions that can put pressure on my urethra and literally clamp it closed. That's when my bladder will fill back up again, until I move or take a deep breath to put pressure on my bladder and force myself to start peeing again.

There really isn't anything that can be done to prevent this from happening. And while it isn't anything dangerous to my health, it IS annoying and can disrupt my sleep. Oh well, I guess this is just my new normal.

It all started 5 years ago when I would leak after urinating (PMD). Then I had COVID and thought I had a UTI. Turns out I have OAB, all associated with an enlarged prostate. Initially I was told I had prostate cancer but tests proved otherwise thankfully.
 

It started off with wearing shields then eventually pads. Things have progressed to where I use 2-3 pads a day or a pullup. At night I use trading pants for comfort. 
 

I tried flowmax and Cialis. Flowmax made me dizzy and Cialis gives me leg pains.

I really don't want things to get worse but I'm trying to control what I can. Would like to hear from others that have BPH.

First off, I'm convinced that "OAB" is urologist code for "we recognize something is going on with your urine retention and/bladder, but we don't know what. So, let's throw pills at it and see if it makes you go away". Never settle for an OAB diagnosis, or more pills, it does nothing for you.

So I started off with a major auto accident that put me into a wheelchair for 3 months and then a long leg cast for 3 more. I found I couldn't make it to the bathroom in time, so my urologist said it was just my limited mobility. Official diagnosis: functional incontinence related to mobility. Nothing to worry about or look into, and that I should manage with diapers for the time being.

About 6 month later my mobility slightly returned, yet I was still having problems making it in time. A new urologist, and I got a new diagnosis of OAB. And began trying a different pill every 3-6 months. I was also subjected to multiple urological diagnosis tests. Of note here: this test has you empty you bladder and measures output rate and volume. Then they put a catheter in you, and slowly fill our bladder. You call out when you feel it and again when full. Then they have you pee past the catheter as much as possible to measure pressure, rate and volume. Me though, i could never pee past the catheter so that always invalidated the test.

All this occured during at least another 5-7 years. I moved, twice, so add another new urologist each time, but no actual changes. And had an insurance change too, so more of the same yet again.

Eventually I was fed up with the non-support I was getting and switched urologists- yet again. This doctor actually talked to me to come up with a new diagnosis, but also made sure to include another diagnosis test- which i again failed for results. New diagnosis, Severe Urge incontinence. Followed up by even more pills every 3-6 months. Uuugh.

Another point here, with all the pills. I found if I refused any more pills then every single urologist would get stuck on that one pill. Likely thinking it "would work" if only I gave it a real try. They'd be so hung up on that, they couldn't look past it and move on to something else. So, after many refusals I found it was faster and easier to just take them and prove they don't work, or worse ad bad side effects.

Eventually, after 18 plus years I landed at the Mayo Clinic in Florida. Finally I had found a urologist who would listen to me once again. He deduced the reason why I failed the test was two parts. First the catheter used in the tests was too big for me. And second I was experiencing too much pain to just bear through it. So, one strong pain pill before hand, and a child's size 8fr catheter and I barely got through it. My internal bladder pressure was literally off their normal chart space. In fact, it registered 3-4x higher. 

New diagnosis, Sever Urge Incontince coupled with a Neurogenic Dyssynergia Sphincter (basically, my muscle wiring was crossed and instead of relaxing to pee my muscles was clamping down instead). Gee, go figure. But FINALLY, a proper diagnosis.

From there we then determing my sphincter had to be bypassed, and my bladder couldn't be allowed to fill. That was the only way to alleviate both diagnosis, and that no pill would have ever helped me. He was concerned this would make me incontinent though, and hesitated. Up until I pointed out I had been incontinent, and needed diapers, for the previous 18 years. The surgery would though alleviate my inability pee, completely remove my painful urges, and greatly improve my quality of life.  I was then scheduled for what would be the first of 15 surgeries to get me there.

In the end it took me out 20 years to get the right diagnosis, AND to get me properly treated. So if you've read this far, my advice is DO NOT SETTLE, not for an OAB diagnosis, not for more pills, and definitely not another quack urologist who isn't even willing to spend the time and listen to you.

Years later, with early onset BPH, playing the watch and wait game, then finally having Rezūm procedure, my bladder capacity has decreased (from the bladder wall thickening, and the muscle strengthening).  This has shifted the nocturnal enuresis to nightly (assuming I stay normally (or better) hydrated and also get a good nights sleep) and added a daytime light leaking component, which means I'm now wearing protection all the time (outside of the bathroom).  I still normally make it during the day to the toilet, but I now have a slight pre and/or post leak that will leave some dampness I have to deal with.

Since this is the form that we would discuss our symptoms and our diagnosis, I figured I would place something here so people know what I deal with. Please note that because we do not have very many members yet, I'm not going to hit the mentions for every person, but they will see the posting here when they enter the Forum, so I shouldn't have to worry about that. once we have a lot more members, then we can start using mentions to be able to allow them to see that in their notifications panel ~Brian~

I will say that I have many diagnosis, but that is because I have cerebral palsy, and there's a myriad of other things that can crop up because you are dealing with it. One of the things that I was dealing with in 2018 and 19 was having accidents all the time, or not being able to get to the bathroom fast enough in like summer of 2019, where I would feel it and I wouldn't be even able to get up to be able to respond, or I wouldn't even know that I was doing it until it was it was too late. When this started happening, I knew that I had to have some help, so that's when I started as a member of Daily Diapers, I knew that this is where I needed to be, because I needed to help and the support because I'm thinking to myself how is I going to handle it?

so my primary diagnosis is cerebral palsy, known as CP: it is a neurological condition and not a disease. CP can affect your muscles your bones your tendons and other parts of your body as well as your brain and other functions. there are there are many different types of CP, but each diagnosis of CP is different and unique to the person who has it, and it is caused due to something happening like maybe at birth when the cord gets wrapped around someone's neck, or there might be something that is caused in the womb And then you're born with CP I'm not sure exactly how that works, but there are many different types of CP, many different severities, and it is dependent on the individual who has it.

As such, I have many sub diagnosis that have been showing up showing up over the years. here in this form, we will be dealing with incontinence, and it's tied to CP. My primary diagnosis based on incontinence are:

"Cerebral Palsy"

" Continuous leakage of urine"

"Fecal and continents with fecal urgency"

I have also been diagnosed with diverticulitis and IBS. these conditions combined with CP can cause many problems. That I was continent for as long as I was from about the age of two until the age of 46. once I started having accidents and having problems where I did not have any idea what was going on and I'm able to respond fast enough, I knew that I was in need of help, so my first stop was daily diapers. I chose this site because the people on it are very knowledgeable and know how they deal with certain situation, how to deal with the conditions, how to deal with the semantics of having incontinence, making sure you have the right equipment and supplies, and the most important thing is the support of a loving community that doesn't judge based on the fact that someone is dealing with I made the choice in 2020 to go full time in diapers. This is because of all the Times that I would have accidents, Or when I didn't know what was gonna happen and when. as I started my journey, I went to the doctor and asked him for my help, got the diapers I needed, and I called my case management team to tell them that I needed some help, and to open the floodgates. I was surprised at how quickly I was able to get whatever I needed to make myself able to handle the physical aspects of dealing with incontinence the changing of the diapers making sure your clean making sure that you're not dealing with rashes and other problems, because as you're dealing with incontinence you have to make sure that your extra clean and other things that normally someone that just takes a shower for example would take for granted.

Once I went to the testing phase of every single cloth backed ridiculous diaper that they supposedly make, I was able to finally get the Megamax.  I basically had to tell Medicaid that I was dealing with severe incontinence both ways, and I asked for the diagnosis to be added, because I wasn't gonna deal with having accidents and not have a way to deal with it period Of course they wanted me to be tested, and all this, And I just basically said that I had CP already, and it is widely known CP do deal with incontinence issues depending on the situation, and I am dealing with such an issue, and I am the expert and so is the doctor, so they know what I need, so there's no need for me to go to urologist to be tested. once the doctor gave me the proper diagnosis and the paperwork to back it up, I was able to get the Mega Max's within 10 days, or at least they said 10 days and I think it was like 3. I think somebody kicked it up to the top, after I had done my homework and listed my top five diapers that I wanted, as asked, and the first one was the Mega Max and that was what they approved period Now that I've proven that I need them, I don't have to prove anything else and I can continue to use those diapers because they work for me.

I also think that having cerebral palsy, and using a wheelchair for as long as I have, may have contributed to it, because I was constantly being pulled in and out of rehab centers to help me with extended therapy. As normal, they want you to be mobile and be able to do a lot of different things And that's why the urine therapy, But I feel as when I went in there I was making a huge backstep, they had me using my wheelchair all the time, and by the time a week passed I was probably ready for a diaper, because I couldn't hold anything at night, because no one would take me to the bathroom. Then this starts with a whole bunch of people telling me that would be easier for them if I wore a diaper, And then I was in diapers, and sometimes I would be given heck and sometimes it would be OK. Whatever happened, I was constantly worrying about what was happening to me as some of these people were really nasty and did nasty things. Because of me being in diapers 24/7 for almost actually it's eight weeks the first time and 2nd time it was for six weeks, I was basically in diapers for 14 solid weeks. This made it harder for me to be able to retrain and I knew and I knew my parents were going to be angry, but I just told them that that's what they did, and then they were fine with it, but there were other things that were traumatic. i'll spare that here But to say that incontinence fun, is NOT true for many, but when you were when you were totally incontinent and you have no choice because you don't have any control, you figure out ways to handle it. I don't know if my CP makes my incontinence worse because of the fact that things are changing in my body and my ability to be mobile is changing as well, but when I end up having accidents and I'm not sure what is going on or when it's happening, I'm always happy to have a diaper on, And because of that, I don't have to worry anymore, and I can live my life to the highest standard possible.

So I think the reason why I'm incontinent as well as a diaper lover, is because of the fact that I was in rehab for 14 weeks straight, And the fact that I always like the feeling and the smells that diapers illicit. Many people would say that wearing diapers is a chore, but in my case it can be annoying, because you constantly have to be on the alert to be able to change, and sometimes things happen in places in situations that you wish it didn't, but when you don't have a choice, then you have to be able to make appropriate choices whether with your clothing, your equipment, your supplies, the way you handle your bathroom management, maybe medicine management, and being able to quickly realize when you should change, because you don't want to be hanging around in a dirty diaper for too long, for that causes skin breakdown and wicked diaper rush, i've dealt with that and it's no fun.

I'm just so glad that there are people that accept that there are people that are incontinent! many times people would say that we were "lazy" Or other words that describe the situation where we wear diapers to handle our incontinence. Incontinence is nothing to fear, and incontinence in my mind is the least of my medical conditions that I have to worry about. I can deal with my incontinence, and I choose to deal with it using diapers, it also helps with my feelings and all of the urges that I deal with period Since wearing diapers is not a problem, wearing diapers helps me deal with those things, and makes me feel safe And my stress level has been brought down to zero or pretty close. I'd rather wear diapers for the rest of my life than have consonant worrying about things that I can't control: And in my case, incontinence is something I can't control, So the best thing I can do is to accept it, And accept that I need diapers, and accept that there's no shame in wearing them and there's no reason to feel guilty said or any of those types of because a diaper is there for a reason, here we can discuss that, and we deal with things that cause incontinence or other conditions. my CP in my mind is the main condition, while incontinence and the others listed on my medical profile are subconditions or problems that arise because of my age and because of my CP.

I would definitely interested to hear others diagnosis and be able to determine how they deal with their incontinence or their symptoms and diagnosis. the one thing that's a real pain in the neck is my IBS or my diverticulitis because sometimes that can really come up on me and really cause me problems. i'm glad that there are people who do then continents other than myself, and I know I'm not alone, and that I have good friends that help me to realize that there's no shame in wearing diapers are using them or needing them. It's just a fact of life that you deal with.

Brian