My control is going to shit (not quite literally)

[Denube]

So uh... Yeah.

A little about me to begin with. I'm a somewhat newly self-diagnosed autistic (with a clinical diagnosis coming in March, hopefully) with sensory processing issues, probably disordered. I'm 36 years old, and I've been active on this site for YEARS at this point, although with large gaps of no actual interaction. Some people may know me from older stories I've shared. I don't really write any more, as it's just too much to ask of me given all the other demands on my time as of late and the fact that I've been dealing with autistic burnout for about a year or more now.

In any case, starting at the beginning of this year I've noticed that my underwear were developing yellow stains and occasionally seemed a bit more damp than just sweat could justify. Because I've always kept diapers around for entertainment purposes, I wore a diaper one night to bed and discovered that I was leaking enough to put a roughly 4-5 inch spot of urine on the padding and activating an appropriate amount of the indicator. That was in late February or early March (about 3-5 weeks after I realized I was on the spectrum). I've spent every night since then in diapers.

However... my control has been deteriorating since then. About two to five times a week, I'll wake up with a much wetter diaper than I should have. Then, there's the leaking I've had going on during the day, and the random urges to go. I've realized that pretty much my entire life, what I thought was an urge to go was really pee leaking from the tip of my penis. I don't think I've ever really had sensation in my bladder. How I got potty trained in the first place, I can't really tell you. In addition to all of this, the amount I can regularly void has gone down to maybe about half of what it was at the beginning of the year. I want to state this to be clear: I am NOT untraining. I'm just unlucky.

So... yeah. I'm pretty much just waiting for what little control I have to give out. That's kind of a rough realization to have, but it's one I've come to terms with, I think. I plan on managing the incontinence once it gets to the level of requiring constant protection with either condom catheters during the day and with NorthShore MegaMax diapers at night. If I can't stand the catheters in the daytime, I think I'll probably use BetterDry or ABU diapers during the day. They have decent capacity without being overkill, IMO. I know there's a lot of resources here on this site in the form of people who have been incontinent for a long time, so if anyone can offer any advice in dealing with my issues I would love some input.

I'll answer any questions you may have. I'm not exactly shy about my trials and tribulations. Thanks in advance for anyone who adds their two cents.

As an aside... anyone who tries to be a prick about this to me, I'm just going to ignore and report to mods. I don't think this requires statement, as in the past this forum has been mostly civil, but these days, who knows. All I'm going to say is that I've got a REALLY good idea what's going on in my body and now that I've managed to finally track down some answers, some of which are backed by decades old documentation.

[~Brian~]

12 hours ago, Denube said:

So uh... Yeah.

A little about me to begin with. I'm a somewhat newly self-diagnosed autistic (with a clinical diagnosis coming in March, hopefully) with sensory processing issues, probably disordered. I'm 36 years old, and I've been active on this site for YEARS at this point, although with large gaps of no actual interaction. Some people may know me from older stories I've shared. I don't really write any more, as it's just too much to ask of me given all the other demands on my time as of late and the fact that I've been dealing with autistic burnout for about a year or more now.

In any case, starting at the beginning of this year I've noticed that my underwear were developing yellow stains and occasionally seemed a bit more damp than just sweat could justify. Because I've always kept diapers around for entertainment purposes, I wore a diaper one night to bed and discovered that I was leaking enough to put a roughly 4-5 inch spot of urine on the padding and activating an appropriate amount of the indicator. That was in late February or early March (about 3-5 weeks after I realized I was on the spectrum). I've spent every night since then in diapers.

However... my control has been deteriorating since then. About two to five times a week, I'll wake up with a much wetter diaper than I should have. Then, there's the leaking I've had going on during the day, and the random urges to go. I've realized that pretty much my entire life, what I thought was an urge to go was really pee leaking from the tip of my penis. I don't think I've ever really had sensation in my bladder. How I got potty trained in the first place, I can't really tell you. In addition to all of this, the amount I can regularly void has gone down to maybe about half of what it was at the beginning of the year. I want to state this to be clear: I am NOT untraining. I'm just unlucky.

So... yeah. I'm pretty much just waiting for what little control I have to give out. That's kind of a rough realization to have, but it's one I've come to terms with, I think. I plan on managing the incontinence once it gets to the level of requiring constant protection with either condom catheters during the day and with NorthShore MegaMax diapers at night. If I can't stand the catheters in the daytime, I think I'll probably use BetterDry or ABU diapers during the day. They have decent capacity without being overkill, IMO. I know there's a lot of resources here on this site in the form of people who have been incontinent for a long time, so if anyone can offer any advice in dealing with my issues I would love some input.

I'll answer any questions you may have. I'm not exactly shy about my trials and tribulations. Thanks in advance for anyone who adds their two cents.

As an aside... anyone who tries to be a prick about this to me, I'm just going to ignore and report to mods. I don't think this requires statement, as in the past this forum has been mostly civil, but these days, who knows. All I'm going to say is that I've got a REALLY good idea what's going on in my body and now that I've managed to finally track down some answers, some of which are backed by decades old documentation.

@Denube

based on what I've read, it sounds like you are understanding what you are dealing with to a point, and that means that you know that you are on the spectrum, and that you have been having problems with leaking and voiding and not being able to feel it. If it were me, I probably would do exactly what you are talking about doing. Part of being incontinent means that you have to accept your situation for what it is, and some people have a hard time coming to that conclusion, but it sounds like you are coming to that point, and understand what you are dealing with quite well.

If I were in your shoes, I probably wouldn't use a condom catheter, I don't know if you know this but I have cerebral palsy myself, and I don't have the best eye hand coordination for certain tasks. The last time I had a catheter in me it caused me to have a severe UI and I did not want to have to deal with the burning sensations. If I were you, I would probably use the diapers during the day, and probably forego the condom catheter. Use of this device is up to you, but I would probably stay with my diapers. For the record I wear mega Max diapers 24 hours a day, and I have a pretty good supply of them so there shouldn't be an issue for me, but do you have enough supply to be able to use your diapers that way should you need to? I would probably use the diapers now, and just resign yourself to the fact that you're going to need them anyway, so you will have to eventually prepare yourself for the eventuality that you will need diapers at all times.

Once you have accepted the fact that you are using diapers, and that you need diapers, I believe it is easier to be able to deal with the next step which is: how to proceed to deal with it. It sounds to me like you have a pretty good plan in place, but as I said I'd probably go 24/7 now rather than to wait until you lose all control: this is because if something should happen you would not have the protection that you need, and if you are an active individual, you may find that diapers are more advantageous to you because it'll allow you to do what you want to do without having to worry so much about using the bathroom all the time.

I started having problems with incontinence in 2019 when I started having accidents, and I've dealt with diverticulitis and IBS for many years, and that can be painful and debilitating. When I noticed that I was having these issues, I asked for help and I was able to get that through the doctor. I had already discussed with him in 2018 about the necessity of being able to get diapers very easily should the need arise, and he told me that all I'd have to do is ask: when I did, he complimented me on the fact that I had the guts to be able to go in there and ask him for them, and I thanked him for being understanding and trying to help me to deal with something that had been bothering me for some time, and I can tell you from experience once I had done that it made me feel a lot better, because a lot of people here on DD have helped me to come to the realization that diapers have helped me immensely.

Having incontinence is a pain sometimes, and even having autism can also be a struggle, but I'm with you on this one: I wouldn't worry too much about the condom catheters or using catheters at all during the day. Using a catheter can cause more problems if you are not careful putting them in, or you are not careful in making sure that they are clean. Using a diaper would probably be be easier for you because it takes a few moments to change a diaper and clean yourself up, whereas doing a catheter could take a lot longer since you have to make sure that you're doing it exactly right, because this catheter is in your pee canal, and you don't want to end up having any infections because of it.

I hope my information has been helpful to you: when you lose control it can be annoying and sometimes devastating, but it sounds to me is if you have the right idea as to what you want to do, you are simply questioning whether you want to use the catheters during the day, or if you wanna use diapers, and if so during the day what type, and at night use mega maxes period since I use mega Max as 24 hours a day I can tell you that they are amazing, but you also would have to have a pair of Gary Ware or a pair of trifectas to cover your diaper so that if you were to leak, whatever comes out will stay within your cover instead of getting all over you or the floor

I wish you the best of luck

Brian

[Denube]

45 minutes ago, ~Brian~ said:

@Denube

based on what I've read, it sounds like you are understanding what you are dealing with to a point, and that means that you know that you are on the spectrum, and that you have been having problems with leaking and voiding and not being able to feel it. If it were me, I probably would do exactly what you are talking about doing. Part of being incontinent means that you have to accept your situation for what it is, and some people have a hard time coming to that conclusion, but it sounds like you are coming to that point, and understand what you are dealing with quite well.

If I were in your shoes, I probably wouldn't use a condom catheter, I don't know if you know this but I have cerebral palsy myself, and I don't have the best eye hand coordination for certain tasks. The last time I had a catheter in me it caused me to have a severe UI and I did not want to have to deal with the burning sensations. If I were you, I would probably use the diapers during the day, and probably forego the condom catheter. Use of this device is up to you, but I would probably stay with my diapers. For the record I wear mega Max diapers 24 hours a day, and I have a pretty good supply of them so there shouldn't be an issue for me, but do you have enough supply to be able to use your diapers that way should you need to? I would probably use the diapers now, and just resign yourself to the fact that you're going to need them anyway, so you will have to eventually prepare yourself for the eventuality that you will need diapers at all times.

Once you have accepted the fact that you are using diapers, and that you need diapers, I believe it is easier to be able to deal with the next step which is: how to proceed to deal with it. It sounds to me like you have a pretty good plan in place, but as I said I'd probably go 24/7 now rather than to wait until you lose all control: this is because if something should happen you would not have the protection that you need, and if you are an active individual, you may find that diapers are more advantageous to you because it'll allow you to do what you want to do without having to worry so much about using the bathroom all the time.

I started having problems with incontinence in 2019 when I started having accidents, and I've dealt with diverticulitis and IBS for many years, and that can be painful and debilitating. When I noticed that I was having these issues, I asked for help and I was able to get that through the doctor. I had already discussed with him in 2018 about the necessity of being able to get diapers very easily should the need arise, and he told me that all I'd have to do is ask: when I did, he complimented me on the fact that I had the guts to be able to go in there and ask him for them, and I thanked him for being understanding and trying to help me to deal with something that had been bothering me for some time, and I can tell you from experience once I had done that it made me feel a lot better, because a lot of people here on DD have helped me to come to the realization that diapers have helped me immensely.

Having incontinence is a pain sometimes, and even having autism can also be a struggle, but I'm with you on this one: I wouldn't worry too much about the condom catheters or using catheters at all during the day. Using a catheter can cause more problems if you are not careful putting them in, or you are not careful in making sure that they are clean. Using a diaper would probably be be easier for you because it takes a few moments to change a diaper and clean yourself up, whereas doing a catheter could take a lot longer since you have to make sure that you're doing it exactly right, because this catheter is in your pee canal, and you don't want to end up having any infections because of it.

I hope my information has been helpful to you: when you lose control it can be annoying and sometimes devastating, but it sounds to me is if you have the right idea as to what you want to do, you are simply questioning whether you want to use the catheters during the day, or if you wanna use diapers, and if so during the day what type, and at night use mega maxes period since I use mega Max as 24 hours a day I can tell you that they are amazing, but you also would have to have a pair of Gary Ware or a pair of trifectas to cover your diaper so that if you were to leak, whatever comes out will stay within your cover instead of getting all over you or the floor

I wish you the best of luck

Brian

@~Brian~, just clarifying something. You do know a condom catheter is a fully external device, correct? As in, nothing is inserted into the body? It's literally a device for men that is a condom with a collection funnel at the end that goes into medical tubing that then goes into a collection bag. The condoms are also single use items that get replaced daily.

If I'm wrong in my assumption, please don't read too much into my statement. I'm not the best at this sometimes.

Edit: As far as a diaper supply goes, no, I do not have that good of a supply. I've got about 70 Tenas that I bought at someone else's recommendation, but they aren't particularly good diapers without stuffers. I've got 19 Betterdry diapers, but I use those for nighttime use at the moment as they'll contain my accidents when they occur. 12 Rearz Incontrol are on the way because I want to try them out, and I've got a case of 84 Abri-Flex L3 pull-ups on the way. I'll be boosting those with the depends men's guards I bought just before the accidents started getting worse. I use those during the day at work right now. If I need to go out, a Tena will last about 3 hours without stuffer, so that's my go-to. Finally, I've got 2 Abri-Form L4 and one Northshore Supreme.

Edited July 24, 2022 by Denube
added a further response

[~Brian~]

3 minutes ago, Denube said:

@~Brian~, just clarifying something. You do know a condom catheter is a fully external device, correct? As in, nothing is inserted into the body? It's literally a device for men that is a condom with a collection funnel at the end that goes into medical tubing that then goes into a collection bag. The condoms are also single use items that get replaced daily.

If I'm wrong in my assumption, please don't read too much into my statement. I'm not the best at this sometimes.

@Denube

I understand what a catheter is, and I know that there is a difference between a condom catheter and a regular catheter. The reason I know about the difference is because there have been a couple of times when I went on trips with friends of mine where disabled, and there was a summer program in 1990 where we learned independent living skills at the University of Vermont. A couple of individuals we're using diapers, as well as condom catheters, and I wondered what they were, so somebody told me about them. You reminded me of the fact that they were external devices, and after thinking about it, I realized that what I was thinking of was the type of catheter that you stick inside yourself to be able to release. I also understand that some people may not wish to fool around with a condom catheter, and may want to go to diapers because of the convenience, so I do understand that you may think that condom catheters are a pain. Especially if you must go to the bathroom quickly. Regardless of what kind of setup you use, doing it this way can take longer. I've also had friends that have to use catheters, so I am familiar with the way they are used, but I have not used them myself other than when I am in the hospital and they decide to catheterize me to be able to allow me 2 use the bathroom.

Don't worry: your description of a condom catheter reminded me of what it actually was: it is indeed a device designed to do exactly as you have stated.  Also do not worry because you are describing it perfectly. It is my hope that you were able to determine how you wish to proceed, and I hope that my information to you has been helpful.

Brian

[~Brian~]

18 minutes ago, Denube said:

@~Brian~, just clarifying something. You do know a condom catheter is a fully external device, correct? As in, nothing is inserted into the body? It's literally a device for men that is a condom with a collection funnel at the end that goes into medical tubing that then goes into a collection bag. The condoms are also single use items that get replaced daily.

If I'm wrong in my assumption, please don't read too much into my statement. I'm not the best at this sometimes.

Edit: As far as a diaper supply goes, no, I do not have that good of a supply. I've got about 70 Tenas that I bought at someone else's recommendation, but they aren't particularly good diapers without stuffers. I've got 19 Betterdry diapers, but I use those for nighttime use at the moment as they'll contain my accidents when they occur. 12 Rearz Incontrol are on the way because I want to try them out, and I've got a case of 84 Abri-Flex L3 pull-ups on the way. I'll be boosting those with the depends men's guards I bought just before the accidents started getting worse. I use those during the day at work right now. If I need to go out, a Tena will last about 3 hours without stuffer, so that's my go-to. Finally, I've got 2 Abri-Form L4 and one Northshore Supreme.

@Denube

thank you for that response! Sounds to me like you have a small supply of diapers that you use effectively. If you are going to go 24/7 once you lose total control, you may want to look into the North Shore mega Max. These are the best diapers that northshore makes, and they also make the cloth backed version of this diaper as well. I use the mega Max as my primary diaper as I've probably stated before. I always try to keep at least 360 diapers on hand at all times because I can put in an order once per month, and I get a total of 90 diapers every month when I order. My prior authorization from the state allows me to get 540 of them per six month period.  I guess they do the prior authorizations on a 6 month basis because of the type of business that they are dealing with. I guess they want to make sure that they don't lock themselves into a year prior authorization and then have the price go up, so they monitored this and set it so that these things have to be renewed and checked every six months. Because of my setup, all I have to do is ask the supplier in Hooksett NH to re up the authorization when it becomes time, and then call and ask her to place an order. This time I decided to go with the blacks. You will find that north shores mega maxes have the following colors: white, which is standard, blue, black, pink, and tie dye. If you're interested, the North Shore trifecta is it cover that you can use to put over your diapers to protect them from leaking all over the place. I usually wear one of these when I go out because there is nothing more annoying than to have one of the best diapers on, and then to use it to its fullest extent possible, only to realize that you've overextended it, and not realize that you have leaked. As far as I'm concerned North Shore is the best diaper around, and I say that because I have had very little negative things happen to me when using the mega Max.

When I started wearing diapers, I went through Amazon to get them. After a small problem where someone from North Shore had told my supplier that I should use the wrong size booster in my diaper, they ordered me an extra large package of boosters, when I use a medium diaper, and when you use a medium diaper you should go for the large boosters. Because I had to go through the return cycle, and because it was very hard to do that, I asked my supplier if it would be more advantageous to go through North Shore directly, and so doing, eliminate the middleman, and then if there is any issue, northshore can directly deal with my supplier and credit them back with they need. I think it is a lot easier to deal with North Shore if you are doing it long term if that's where you wish to go, rather than having to deal with North Shore through Amazon and have any issues. North Shore has always done me right, and Adam Greenberg the owner of the company is also a member here on DD.

Brian

[Denube]

4 minutes ago, ~Brian~ said:

@Denube

thank you for that response! Sounds to me like you have a small supply of diapers that you use effectively. If you are going to go 24/7 once you lose total control, you may want to look into the North Shore mega Max. These are the best diapers that northshore makes, and they also make the cloth backed version of this diaper as well. I use the mega Max as my primary diaper as I've probably stated before. I always try to keep at least 360 diapers on hand at all times because I can put in an order once per month, and I get a total of 90 diapers every month when I order. My prior authorization from the state allows me to get 540 of them per six month period.  I guess they do the prior authorizations on a 6 month basis because of the type of business that they are dealing with. I guess they want to make sure that they don't lock themselves into a year prior authorization and then have the price go up, so they monitored this and set it so that these things have to be renewed and checked every six months. Because of my setup, all I have to do is ask the supplier in Hooksett NH to re up the authorization when it becomes time, and then call and ask her to place an order. This time I decided to go with the blacks. You will find that north shores mega maxes have the following colors: white, which is standard, blue, black, pink, and tie dye. If you're interested, the North Shore trifecta is it cover that you can use to put over your diapers to protect them from leaking all over the place. I usually wear one of these when I go out because there is nothing more annoying than to have one of the best diapers on, and then to use it to its fullest extent possible, only to realize that you've overextended it, and not realize that you have leaked. As far as I'm concerned North Shore is the best diaper around, and I say that because I have had very little negative things happen to me when using the mega Max.

When I started wearing diapers, I went through Amazon to get them. After a small problem where someone from North Shore had told my supplier that I should use the wrong size booster in my diaper, they ordered me an extra large package of boosters, when I use a medium diaper, and when you use a medium diaper you should go for the large boosters. Because I had to go through the return cycle, and because it was very hard to do that, I asked my supplier if it would be more advantageous to go through North Shore directly, and so doing, eliminate the middleman, and then if there is any issue, northshore can directly deal with my supplier and credit them back with they need. I think it is a lot easier to deal with North Shore if you are doing it long term if that's where you wish to go, rather than having to deal with North Shore through Amazon and have any issues. North Shore has always done me right, and Adam Greenberg the owner of the company is also a member here on DD.

Brian

Well, that's something at least. Honestly, it doesn't surprise me the owner of Northshore is on here. I remember the fiasco where they sent out samples without confirming it a few years back. xD that was interesting. I almost got caught when I only wore for fun.

As far as boosters go, I usually use large boosters despite wearing XL briefs. the size of the XL boosters is somewhat difficult to manage. I do get a lot of my diapers through amazon, but when I get paid I plan on picking up at least one case of Megamax diapers directly through Northshore. I may also transition to using supremes during the day if I go the diaper route--I probably don't need THAT much capacity in the daytime, as my leaking has pretty much ensured that unless I've got something preventing me from peeing (sitting in a car seat or an erection) I don't really have more than about a 5 ounce capacity in my bladder. That's just been going downward so steadily that it's going to be the reason why I eventually wear protection of some kind regardless. Hard to flood when the most you've got is a few ounces. I think it may be due to a potential connective tissue disease and it's just my time for that part of my body to give out.

And I agree. Northshore is probably the best medical diaper company out there. Reasonable prices, great quality, and well-designed products.

 

[~Brian~]

30 minutes ago, Denube said:

Well, that's something at least. Honestly, it doesn't surprise me the owner of Northshore is on here. I remember the fiasco where they sent out samples without confirming it a few years back. xD that was interesting. I almost got caught when I only wore for fun.

As far as boosters go, I usually use large boosters despite wearing XL briefs. the size of the XL boosters is somewhat difficult to manage. I do get a lot of my diapers through amazon, but when I get paid I plan on picking up at least one case of Megamax diapers directly through Northshore. I may also transition to using supremes during the day if I go the diaper route--I probably don't need THAT much capacity in the daytime, as my leaking has pretty much ensured that unless I've got something preventing me from peeing (sitting in a car seat or an erection) I don't really have more than about a 5 ounce capacity in my bladder. That's just been going downward so steadily that it's going to be the reason why I eventually wear protection of some kind regardless. Hard to flood when the most you've got is a few ounces. I think it may be due to a potential connective tissue disease and it's just my time for that part of my body to give out.

And I agree. Northshore is probably the best medical diaper company out there. Reasonable prices, great quality, and well-designed products.

 

@Denube

I remember when I first got the extra large booster. This was because a mistake was made, and my supplier was told to order the wrong size. The extra large booster is so big that it would not fit in a medium diaper it just goes outside of the leg gathers, and because it is a extra large booster, the wings extend past them and do not do any good for anyone wearing a medium diaper. North Shore tells me that the best thing to do is to go one size up from the size of the diaper that you are wearing because you want the booster to be able to fit in the middle of the diaper and not extend passed the leg gathers. The idea is to contain whatever you are releasing within the diaper and not have it leak out. Extra large boosters with medium diaper would allow that to happen quite easily.

Because I am getting my diapers through the state, and because my supplier can decide where to get my products from, I asked her to go directly through North Shore, so that we don't have any more miscommunications as to what we order, what size, or what quantity. I don't mind an occasional mix up, but when you order through Amazon and then Amazon ships you the wrong material, this can be a nightmare if you need to return product. Going directly through North Shore is the easiest way to make sure that you get the product that you need, because you can ask them directly what product they think you should use, because they have the expertise, and then once you find that product out, then you can use it as you see fit.

Losing control can be a pain because you're not sure when you will release and what you will release. Be assured however, that once you get your system down, and figure out what you are going to do, it becomes a lot easier to deal with it. The hardest thing I think is the acceptance piece, and once you are through that then it is all downhill from there, because the hardest piece has already been taken care of. Once you accept it, then you have to make sure that you have the best product available to help you deal with it. My advice to you is to make sure you have the best product you can get, because if you get something that is not good quality, you will regret it and it will cost you in the long run money time and aggravation in the long run.

I wish you the best in trying to find the right product for your situation, and I hope that you were able to make the decision that is the most advantageous for yourself, as well as to be most comfortable with your decision. Having incontinence is not easy, but life sometimes is not easy, but the best thing is that there are ways to handle situations, and being incontinent really is not as bad as other things that can happen in life. I wish you the best

Brian

[zzyzx]

On 7/23/2022 at 4:23 PM, Denube said:

So uh... Yeah.

A little about me to begin with. I'm a somewhat newly self-diagnosed autistic (with a clinical diagnosis coming in March, hopefully) with sensory processing issues, probably disordered. I'm 36 years old, and I've been active on this site for YEARS at this point, although with large gaps of no actual interaction. Some people may know me from older stories I've shared. I don't really write any more, as it's just too much to ask of me given all the other demands on my time as of late and the fact that I've been dealing with autistic burnout for about a year or more now.

In any case, starting at the beginning of this year I've noticed that my underwear were developing yellow stains and occasionally seemed a bit more damp than just sweat could justify. Because I've always kept diapers around for entertainment purposes, I wore a diaper one night to bed and discovered that I was leaking enough to put a roughly 4-5 inch spot of urine on the padding and activating an appropriate amount of the indicator. That was in late February or early March (about 3-5 weeks after I realized I was on the spectrum). I've spent every night since then in diapers.

However... my control has been deteriorating since then. About two to five times a week, I'll wake up with a much wetter diaper than I should have. Then, there's the leaking I've had going on during the day, and the random urges to go. I've realized that pretty much my entire life, what I thought was an urge to go was really pee leaking from the tip of my penis. I don't think I've ever really had sensation in my bladder. How I got potty trained in the first place, I can't really tell you. In addition to all of this, the amount I can regularly void has gone down to maybe about half of what it was at the beginning of the year. I want to state this to be clear: I am NOT untraining. I'm just unlucky.

So... yeah. I'm pretty much just waiting for what little control I have to give out. That's kind of a rough realization to have, but it's one I've come to terms with, I think. I plan on managing the incontinence once it gets to the level of requiring constant protection with either condom catheters during the day and with NorthShore MegaMax diapers at night. If I can't stand the catheters in the daytime, I think I'll probably use BetterDry or ABU diapers during the day. They have decent capacity without being overkill, IMO. I know there's a lot of resources here on this site in the form of people who have been incontinent for a long time, so if anyone can offer any advice in dealing with my issues I would love some input.

I'll answer any questions you may have. I'm not exactly shy about my trials and tribulations. Thanks in advance for anyone who adds their two cents.

As an aside... anyone who tries to be a prick about this to me, I'm just going to ignore and report to mods. I don't think this requires statement, as in the past this forum has been mostly civil, but these days, who knows. All I'm going to say is that I've got a REALLY good idea what's going on in my body and now that I've managed to finally track down some answers, some of which are backed by decades old documentation.

@Denube:

I didn't see it mentioned, and since this isn't the incontinence desires forum, I'll ask: 

• Have you talked to your doctor about this?
• Have you talked to a urologist about this?
• Have you had your PSA checked?
• Have you had your prostate checked?

Just some things to consider before resigning your self to not getting better and expecting worse.

Yes, you may already "know" things are heading in the direction you mention.  And if that is the case, accepting the issue in my opinion is healthy from a mental perspective.  But you should get things checked out to make sure it isn't something that needs attention.

For me I have a combination of how I sense things (so, I can understand your thoughts about "how the heck did I train in the first place"....) getting mucked with during illness, in part with the medications used to get over it and then later early onset of an enlarged prostate that negatively impacted my bladder (maximum functional) capacity and control, even after handling the enlarged prostate issue (with the Rezūm procedure). 

[zzyzx]

@Denube:

Also, concerning diaper supply, @~Brian~ uses disposables and can give his perspective on that.  I mainly use cloth diapers.  I prefer cloth diapers probably in part because that's what was (likely) used on me the first time (based on my age), and I find them comfortable even when wet (as long as not cold, not leaking and no diaper rash -- and I tend to not get in trouble on diaper rash easily).  Another part is I have the facilities to wash and dry (in my home), so that isn't an issue.  And overall (over time) this is a "cheaper" solution.  If you want me to go into more details of what I use, please ask.  And I have used cloth diapers while vacationing. 

As to disposables, when my occasional nocturnal enuresis first kicked in, I couldn't find one that would reliably handle my overnight volume (and contributed to my selection of cloth diapers for the solution).  With recent disposables, that has changed.  Mega-max is a good diaper, but is just shy of cutting it on its own over night.  I've found Tykables Cames (least "AB" of their line) with their dubler tends to handle my night time situation fairly well, and actually with my day time control can end up using only one a day (fresh after shower in the morning), and mostly worked on a recent vacation.  And the "velcro" type tabs allow for re-fastening when making it to the toilet during the day.  I think the Mega-max with a Tykables dubler would also work for the night, but is "interesting" to try to use like I use the Tykables during the day as the Mega-max tapes are strong and can make it more interesting when trying to get to the toilet -- but it can work out.

So, depending on your voiding pattern and volume, decisions on trying to use the toilet vs preferring to not dealing with that issue (for various reasons), etc., will impact what  you will want / desire / need if deciding to go with disposable diapers.

[Denube]

2 hours ago, zzyzx said:

@Denube:

I didn't see it mentioned, and since this isn't the incontinence desires forum, I'll ask: 

• Have you talked to your doctor about this?
• Have you talked to a urologist about this?
• Have you had your PSA checked?
• Have you had your prostate checked?

Just some things to consider before resigning your self to not getting better and expecting worse.

Yes, you may already "know" things are heading in the direction you mention.  And if that is the case, accepting the issue in my opinion is healthy from a mental perspective.  But you should get things checked out to make sure it isn't something that needs attention.

For me I have a combination of how I sense things (so, I can understand your thoughts about "how the heck did I train in the first place"....) getting mucked with during illness, in part with the medications used to get over it and then later early onset of an enlarged prostate that negatively impacted my bladder (maximum functional) capacity and control, even after handling the enlarged prostate issue (with the Rezūm procedure). 

I have talked to my doctor about it. She was... dismissive of the entire ordeal. I had to go outside of normal means to get an appointment with an Urologist. I did have an appointment with my urologist, and they immediately scheduled me for a urodynamic test. I don't have any symptoms of enlarged prostate if that's what you're worried about. They did an ultrasound and said everything looked okay, so... I'm not particularly worried about that.

However, I've had to put ALL of my medical treatment relating to this on hold as my insurance has decided that me trying to figure out what's going on isn't 'medically necessary' and hasn't paid out a penny on any of the doctor's visits I've had. I immediately cancelled the urodynamic test as I can't afford ANOTHER $5,000 bill because my insurance sucks ass. Sadly, my workplace insurance is the only option I have.

I haven't completely resigned myself to the fate of incontinence, but the most likely causes are either some kind of hypermobile disorder causing weakened muscles in both the bladder and lower pelvic floor combined with interception issues, or multiple sclerosis which runs in my family.

Given how my control is gradually giving out and I'm experiencing mixed incontinence with no change in my motor control, vision, or unexplained numbness (I've got carpal tunnel syndrome), I'm of the opinion that the former is the most likely candidate when accounting for all the information I have at the moment. However, in either situation the continence issues will be progressive and non-reversible without surgery. I'm not getting surgery for something that can be handled without an invasive procedure.

Just my take on the facts as I have them.

2 hours ago, zzyzx said:

@Denube:

Also, concerning diaper supply, @~Brian~ uses disposables and can give his perspective on that.  I mainly use cloth diapers.  I prefer cloth diapers probably in part because that's what was (likely) used on me the first time (based on my age), and I find them comfortable even when wet (as long as not cold, not leaking and no diaper rash -- and I tend to not get in trouble on diaper rash easily).  Another part is I have the facilities to wash and dry (in my home), so that isn't an issue.  And overall (over time) this is a "cheaper" solution.  If you want me to go into more details of what I use, please ask.  And I have used cloth diapers while vacationing. 

As to disposables, when my occasional nocturnal enuresis first kicked in, I couldn't find one that would reliably handle my overnight volume (and contributed to my selection of cloth diapers for the solution).  With recent disposables, that has changed.  Mega-max is a good diaper, but is just shy of cutting it on its own over night.  I've found Tykables Cames (least "AB" of their line) with their dubler tends to handle my night time situation fairly well, and actually with my day time control can end up using only one a day (fresh after shower in the morning), and mostly worked on a recent vacation.  And the "velcro" type tabs allow for re-fastening when making it to the toilet during the day.  I think the Mega-max with a Tykables dubler would also work for the night, but is "interesting" to try to use like I use the Tykables during the day as the Mega-max tapes are strong and can make it more interesting when trying to get to the toilet -- but it can work out.

So, depending on your voiding pattern and volume, decisions on trying to use the toilet vs preferring to not dealing with that issue (for various reasons), etc., will impact what  you will want / desire / need if deciding to go with disposable diapers.

For now, I plan on using disposables mostly. I probably will transition to using cloth at some point, but for now it's not really a sensible option for me.

[zzyzx]

On 7/24/2022 at 8:37 PM, Denube said:

I have talked to my doctor about it. She was... dismissive of the entire ordeal. I had to go outside of normal means to get an appointment with an Urologist. I did have an appointment with my urologist, and they immediately scheduled me for a urodynamic test. I don't have any symptoms of enlarged prostate if that's what you're worried about. They did an ultrasound and said everything looked okay, so... I'm not particularly worried about that.

However, I've had to put ALL of my medical treatment relating to this on hold as my insurance has decided that me trying to figure out what's going on isn't 'medically necessary' and hasn't paid out a penny on any of the doctor's visits I've had. I immediately cancelled the urodynamic test as I can't afford ANOTHER $5,000 bill because my insurance sucks ass. Sadly, my workplace insurance is the only option I have.

I haven't completely resigned myself to the fate of incontinence, but the most likely causes are either some kind of hypermobile disorder causing weakened muscles in both the bladder and lower pelvic floor combined with interception issues, or multiple sclerosis which runs in my family.

Given how my control is gradually giving out and I'm experiencing mixed incontinence with no change in my motor control, vision, or unexplained numbness (I've got carpal tunnel syndrome), I'm of the opinion that the former is the most likely candidate when accounting for all the information I have at the moment. However, in either situation the continence issues will be progressive and non-reversible without surgery. I'm not getting surgery for something that can be handled without an invasive procedure.

Just my take on the facts as I have them.

For now, I plan on using disposables mostly. I probably will transition to using cloth at some point, but for now it's not really a sensible option for me.

@Denube:

Best wishes for now.  Sounds like you are doing what you can - that is reasonable based on what insurance is handling. 

Keep up the positive mental attitude.  And while I say acceptance is a two edge sword, one has to get to the acceptance of issues with ones body that isn't going to get better on its own.

And I understand the not wanting unnecessary surgery.

For me, a piece of me would like to get back to (the old) "normal".  Another piece of me knows that my body has changed and I will never get there.  At this point I am trying to keep as much day time control as I can for now.

[Denube]

So... an update: My control had just about gone completely in late December, however thanks to a really good doctor, we managed to figure out what the issue was: a severe vitamin D deficiency. MS isn't out either, but with taking prescription strength Vitamin D a lot of my issues with bladder control have cleared up. I'm still wearing at night for now, but during the day my control is good enough to not worry about wearing diapers.