Have I lost my mind?

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ClaudTheBear

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  1. Incontinent
I'm going to try my best to keep this short. I know a lot hate the drawn out post.

Basically I have been dealing with incontinence for almost 10 years now. Started out with dribbles and progressed from there for about 4 years when I went 24/7. The whole thing was mentally and emotionally draining to the point of considering suicide. I got to a better place and the fact that I'm here is proof that I have a new level of acceptance.
What has changed is I am now beginning to have some retention and this is aggravating the pain and discomfort symptoms I have in the bladder. My urologist feels it's from overly tight and tence pelvic floor muscles but I think it is from a growing prostate (I'll be 44 Wednesday). He has me going to a pelvic floor physical therapist for the next 4 months and the therapist seems optimistic she can help with both my leaking and pain symptoms. I do not share the optimism because I know any urine that is in the bladder causes pain and urges.

My question is this:Am I crazy for preferring to let the incontinence go and even making it worse for a chance to have less or no pain? My thinking is this, if we fix things to allow constant drainage and keep the bladder empty this will keep urine out of the bladder and not allow any build up of pain or pressure. I understand this will make my incontinence worse but as of now, I wear 24/7 because if it try, I might be able to go 20 minutes without running to the bathroom to flat out leaking. That includes night time as well. I realize a while back that I was miserable when I was trying to maintain what control I had. Living next to a bathroom, refusing to go anywhere unfamiliar because I had no idea where the restrooms were. Having to stop every 30 minutes on car trips. It was maddening. When I gave up and just wore, I felt I gained a big part of my life back. Granted I gained new challenges like changing in public places, dealing with leaks and all the other stuff that goes with it. It still sucked but I was in a better place.
Now with the therapy I can work to get some control back but I know I will never be like I was before. That being said, I still picture needing some type of protection all the time. I lived the life chained to a restroom and I don't want to go back there. Am I crazy to say to hell with working to any control and focus on being as pain free as possible? I don't want to be one of those people hooked on pain pills, drugged up and high all the time. I have an active job that I can not be under the influence of anything and I also have a family. I guess the way I see it, I can manage incontinence very well. Yes it's a pain in the ass but I can control it and how I manage it. Pain can only be controlled with pills.

Am I crazy?
 
I agree that the most important thing is control of your pain and discomfort. If fixing the discomfort makes your incontinence worse, so be it. Modern diapers make incontinence easy to manage.
 
Heck no. This is what I've been seeking as well. And I'm about to have surgery #12 in pursuant to it too.

I have/had double sphincter dyssynergia, combined with urge incontinence. Basically my muscles wouldn't relax open when I tried to pee. And not being able to go always led to to incteasingly painful urges. Bad enough I couldn't even think or move.

I was able to stain and push for years, but that led to other, worse, problems. And eventually I couldn't even strain enough to go at all. Now that's pain.

It took years, and dozens of different quack urologists, but I eventually found a competent urologist. He has been helping me greatly. My quality of life has been up and down though. Hopefully one more surgery will open things up down there.
 
Am I crazy for preferring to let the incontinence go and even making it worse for a chance to have less or no pain?
Short anwer heck NO if i had to make sed choice as you i would go for it just for the "slightest" chance it might help
 
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RW25 said:
I'm going to try my best to keep this short. I know a lot hate the drawn out post.

Basically I have been dealing with incontinence for almost 10 years now. Started out with dribbles and progressed from there for about 4 years when I went 24/7. The whole thing was mentally and emotionally draining to the point of considering suicide. I got to a better place and the fact that I'm here is proof that I have a new level of acceptance.
What has changed is I am now beginning to have some retention and this is aggravating the pain and discomfort symptoms I have in the bladder. My urologist feels it's from overly tight and tence pelvic floor muscles but I think it is from a growing prostate (I'll be 44 Wednesday). He has me going to a pelvic floor physical therapist for the next 4 months and the therapist seems optimistic she can help with both my leaking and pain symptoms. I do not share the optimism because I know any urine that is in the bladder causes pain and urges.

My question is this:Am I crazy for preferring to let the incontinence go and even making it worse for a chance to have less or no pain? My thinking is this, if we fix things to allow constant drainage and keep the bladder empty this will keep urine out of the bladder and not allow any build up of pain or pressure. I understand this will make my incontinence worse but as of now, I wear 24/7 because if it try, I might be able to go 20 minutes without running to the bathroom to flat out leaking. That includes night time as well. I realize a while back that I was miserable when I was trying to maintain what control I had. Living next to a bathroom, refusing to go anywhere unfamiliar because I had no idea where the restrooms were. Having to stop every 30 minutes on car trips. It was maddening. When I gave up and just wore, I felt I gained a big part of my life back. Granted I gained new challenges like changing in public places, dealing with leaks and all the other stuff that goes with it. It still sucked but I was in a better place.
Now with the therapy I can work to get some control back but I know I will never be like I was before. That being said, I still picture needing some type of protection all the time. I lived the life chained to a restroom and I don't want to go back there. Am I crazy to say to hell with working to any control and focus on being as pain free as possible? I don't want to be one of those people hooked on pain pills, drugged up and high all the time. I have an active job that I can not be under the influence of anything and I also have a family. I guess the way I see it, I can manage incontinence very well. Yes it's a pain in the ass but I can control it and how I manage it. Pain can only be controlled with pills.

Am I crazy?

RW25, you are on the right track! Welcome to our community where many of us took this choice. I have dribbles and OAB and my doctor told ne that my muscles are rather too these and I need to relax! I am really done and wearing 24/7 and they even prescribed diaper for me (so covered by the healthcare insurance). You are really on the right track, use what is convienant for you!


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I gave up the fight with my badder and switched to nappies 24/7 6 years ago and have never regretted my decision.
 
RW25 said:
I'm going to try my best to keep this short. I know a lot hate the drawn out post.

Basically I have been dealing with incontinence for almost 10 years now. Started out with dribbles and progressed from there for about 4 years when I went 24/7. The whole thing was mentally and emotionally draining to the point of considering suicide. I got to a better place and the fact that I'm here is proof that I have a new level of acceptance.
What has changed is I am now beginning to have some retention and this is aggravating the pain and discomfort symptoms I have in the bladder. My urologist feels it's from overly tight and tence pelvic floor muscles but I think it is from a growing prostate (I'll be 44 Wednesday). He has me going to a pelvic floor physical therapist for the next 4 months and the therapist seems optimistic she can help with both my leaking and pain symptoms. I do not share the optimism because I know any urine that is in the bladder causes pain and urges.

My question is this:Am I crazy for preferring to let the incontinence go and even making it worse for a chance to have less or no pain? My thinking is this, if we fix things to allow constant drainage and keep the bladder empty this will keep urine out of the bladder and not allow any build up of pain or pressure. I understand this will make my incontinence worse but as of now, I wear 24/7 because if it try, I might be able to go 20 minutes without running to the bathroom to flat out leaking. That includes night time as well. I realize a while back that I was miserable when I was trying to maintain what control I had. Living next to a bathroom, refusing to go anywhere unfamiliar because I had no idea where the restrooms were. Having to stop every 30 minutes on car trips. It was maddening. When I gave up and just wore, I felt I gained a big part of my life back. Granted I gained new challenges like changing in public places, dealing with leaks and all the other stuff that goes with it. It still sucked but I was in a better place.
Now with the therapy I can work to get some control back but I know I will never be like I was before. That being said, I still picture needing some type of protection all the time. I lived the life chained to a restroom and I don't want to go back there. Am I crazy to say to hell with working to any control and focus on being as pain free as possible? I don't want to be one of those people hooked on pain pills, drugged up and high all the time. I have an active job that I can not be under the influence of anything and I also have a family. I guess the way I see it, I can manage incontinence very well. Yes it's a pain in the ass but I can control it and how I manage it. Pain can only be controlled with pills.

Am I crazy?

I think you are struggling with the same types of decisions many of us deal with, ie: at what point do we quit trying to regain or maintain control? My short and sweet opinion: Address the pain issue. It's a lot easier to deal with wearing a diaper than living with constant pain. If you've been dealing with incontinence for 10 years, you have probably adapted well to it. Pain/chronic pain, on the other hand, can affect your mood, your activities, your general health, cause irritability that affects relationships, etc. I've found that wearing a diaper doesn't significantly affect my ability to live my life, but being in pain certainly does! Good luck with whatever decision you decide on!
 
After years of bladder “issues”, twelve years ago I was finally diagnosed with cauda equine syndrome, severe OAB and occasional DSD due to Tarlov Cysts on my S3 sacral nerve. Although pain was generally not an issue, after decades of worrying and obsessing over wet pants I finally envisioned an improvement in my quality of life. The treatment for my DSD did not help my OAB and actually made my incontinence worse, and I was facing a life of meds and pads, or no meds and full on diapers. I had experimented with diapers and meds off and on since the 1980’s, and I found the meds more convenient but the diapers better for my health. My health and wife’s preference won out and I’ve been diapered ever since.

Even though I had longed for this option for most of my life, once faced with the reality of being diapered most of the time, and wetting my pants when I wasn’t, it took quite some time to adjust. With the help of a supportive wife, patience and time, I have prevailed.
 
I want to say thank you to all of the supportive people out there. It is reassuring to know that my logic is not is not skewed and those that know how this feels agree with me. It has made me more confident to having that hard conversation with my doctor when the time comes. Also the confidence to look for another doctor if need be. I to have had this conversation with my wife and especially after hearing from one doctor that his most aggressive solution would be to flat out remove the bladder (along with the prostate and part of the urithra) my wife feels it is more important to be whole and manage a way that keeps me as active as I can be with my family. I still have a tad over 3 months of physical therapy left and will give it an honest try and if it helps, great. If not I plan on asking for options on keeping the bladder empty. I anticipated he will be reluctant to go this route because he has made an oath to do no harm but I will need to convince him that while he would be making the incontinence worse, that it could/should help the other symptoms. I just need to be prepared to dig my heels in and stand my ground on what I feel is best for me.

Thank you everyone that chimed in

RW
 
A doctors oath is actually to do good first, or failing that to at least do no harm.

Sometimes "breaking" someones body IS doing good. I should know, I'd be dead if my urologist hasn't been trying to make me functionally incontinent.
 
RW25 said:
What has changed is I am now beginning to have some retention and this is aggravating the pain and discomfort symptoms I have in the bladder. ...
Am I crazy?

Not at all. My issue is similar (retention and leakage, though in my case without the pain because I have no sensation in my bladder). I manage it with intermittent catheters to deal with the retention and wearing 24/7 to deal with the leakage, and I'm 100% satisfied with it.

before I started on the catheters, my bladder was pretty much full all the time, and only emptying involuntarily a little at a time just to relieve the pressure. My urologist said it was never going below about half a litre in there, and consequently I was constantly getting UTIs and kidney infections. The catheters allow me to completely empty my bladder, which I do every 4 hours (except at night) and that also keeps the leakage at bay for a while. And because they're just a quick in-and-out, the risk of UTI's is very low; I haven't had one in over 5 years.

If you can regularly empty your bladder completely, it will likely negate any need for pain medication.
 
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RW25 said:
I'm going to try my best to keep this short. I know a lot hate the drawn out post.

Basically I have been dealing with incontinence for almost 10 years now. Started out with dribbles and progressed from there for about 4 years when I went 24/7. The whole thing was mentally and emotionally draining to the point of considering suicide. I got to a better place and the fact that I'm here is proof that I have a new level of acceptance.
What has changed is I am now beginning to have some retention and this is aggravating the pain and discomfort symptoms I have in the bladder. My urologist feels it's from overly tight and tence pelvic floor muscles but I think it is from a growing prostate (I'll be 44 Wednesday). He has me going to a pelvic floor physical therapist for the next 4 months and the therapist seems optimistic she can help with both my leaking and pain symptoms. I do not share the optimism because I know any urine that is in the bladder causes pain and urges.

Been thinking about this post and am curious - What kind of therapy do they do for pelvic floor therapy?
 
For me so far, it started out with a lot of questions and uncomfortable answers. She ask about how much I leak, how often I make it to the bathroom, bowel habits and so on. Then it went to an evaluation of my pelvic floor muscles which to a guy and only be done rectally. She checked strangth and timing buy having me do kegals while she checked. Eventually we began exercises that involve breathing, relaxing and focusing on those muscles.
I have also done some biofeedback to check how well those muscles work. At h I me, I have to do keagle and try to work on timed voiding even though it's mostly pointless for me but she feels we need to start somewhere
 
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RW25 said:
At h I me, I have to do keagle and try to work on timed voiding even though it's mostly pointless for me but she feels we need to start somewhere

Keep working at those Kegel exercises. It can take quite a while for them to be effective. They have helped me reduce my urinary retention and also improved my timed voiding somewhat.

My therapist actually made me do Kegel exercises while she kept her gloved finger up my anus to be certain that I was using the muscles correctly. As we discuss what our most embarrassing experiences have been with our incontinence, that was it for me.:rolleyes: However, she was a Ph.D. therapist with a specialty in pelvic floor and was totally professional about everything.

--John
 
being pain free, or at least avoiding the majority of pain is the best! anything less would be where i say crazy begins. get rid of the pain, everything else will work itself out.
 
Timed voiding has got to be the dumbest thing ever for improving continence. The whole point is to NOT go for as long as you can possibly last. This is exactly what we do with potty training little kids too. All timed voiding does is interrupt your day and have you make unnecessary trips to the bathroom.

I remember when my urologist demanded I try this. I ended up having to set my watch alarm for every hour, and drop whatever I was doing so I could go to the bathroom. Not only was this disruptive, but it was pointless for me too since I would still get bladder urges at random times. After just one week of keeping that log, I quit that and told my urologist he was a quack and to go to hell.
 
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