www.incontinentsupport.org

Hi all,
This is my first post. I just recently became incontinent, about one and a half months ago. It seems I have developed urge incontinence and have what seems to me as large, fast voids sometimes (no flow issues here), necessitating the wearing of diapers, not just pads or pull-ups. I'm glad I found this community. I'm not much of a talker but I hope to contribute sometimes and I'm sure I will have questions as I navigate the sea of available treatments and/or available protection options.

I do have easy access to restrooms (even a private one) where I work, fortunately. But that doesn't mean I can always drop everything I'm doing and just jet off to the restroom. I work in IT so have frequent contact with co-workers both on the phone and in person. If I'm in a webex meeting I may have to wait for a bit or otherwise awkwardly excuse myself at a moments notice, sometimes interrupting to do it. So far this has happened a few times now, but I was able to hold on mostly and only pee a little. On other occasions I have been face to face with a coworker when it happened. One time was while talking to a chatty lady co-worker. My bladder suddenly sent the urgent signal and I knew I didn't have long. I felt like she could probably see the frantic look on my face (like how could she miss it?) but she kept talking. When I started to slowly lose control and start dribbling about 30 seconds later I interrupted her and told her I needed to go to the restroom. She was polite and quickly ended the superfluous conversation. Another time was talking to a male co-worker and fortunately the conversation ended right after I got the urge.

The worst was this morning though. I was helping a lady with her work-from-home laptop and of course my bladder spasms. I didn't feel like I could easily excuse myself from this one suddenly (she was higher up the corporate ladder) and continuing to hold it would mean an eventual total loss of control and wetting anyway, sooner rather than later, not to mention the pain and mental load it requires to concentrate on holding it. So I made the decision to just let go. There I was wetting myself, trying to regulate the flow as much as possible so it wouldn't overwhelm the diaper. It was a success, with no leaks. But I felt SO self conscious , just standing there intentionally wetting myself in front of my co-worker! And I was terrified by the thought that my diaper might leak and she would see.

So I want to ask, does this get easier?
I see a lot of talk about diapers leaking and I have had a leak or two already, though not at work yet. Do you learn to trust the diaper for the most part? Is it just a matter of finding the right diaper that works 99.9% of the time?
Do other options like those used with a urine bag work more reliably?
Do you get used to peeing your diaper or other protection in front of co-workers?
Do you feel humiliated for intentionally letting go, even though you realize if you waited a minute longer you wouldn't be able to control it anymore anyway?

This is really hard. I hate it!!!

I am glad you found us and welcome! Post away with questions. Don't let the current calm discourage either. I had lots of questions when I started out myself, last year.

You didn't indicate what type of protection you use. There are several options today. I have urgent bladder incontinence myself, from years of diabetes. I use pull-ups by day so that if I have an accident, it doesn't cause embarrassment. It can happen in so many situations, long phone calls, long meetings, waiting too long at a lunchtime drive thru etc. So you must be prepared for that. In your situation, it sounds like it comes up frequently.

So I want to ask, does this get easier?

Yes, it does get easier provided you use good enough protection. It is best to over protect in the beginning until you can test and trust lower cost options. It does take some time and experimentation to find that point and everyone tends to be different.

I see a lot of talk about diapers leaking and I have had a leak or two already, though not at work yet. Do you learn to trust the diaper for the most part? Is it just a matter of finding the right diaper that works 99.9% of the time?

Yes, it's mostly about trust. In the beginning you might be tempted to use drug store products that are simply underwhelming in their protection capability. Better products can be found at online stores that specialize in incontinence products.

Do you get used to peeing your diaper or other protection in front of co-workers?

If your protection is adequate, they should not be the wiser. Some folks have to practice avoiding the "pee face" while that is going on. In my case, I tend to go when I am standing still, often in front of a checkout clerks, bank teller or similar. You just let it happen while not making it you're look like you're concentrating. I've had a lot of practice it seems.

Do you feel humiliated for intentionally letting go, even though you realize if you waited a minute longer you wouldn't be able to control it anymore anyway?

I found that if I suppressed it, it would only come back again in a few minutes, more urgent than before (sometimes with increasing levels of pain). In other words, "resistance is futile"! So as long as you trust your protection, it is best to just "let it flow" rather than to keep revisiting that urge and potential pain. The only time I feel humiliated is when (at home) I have to do that "walk of shame", taking my grocery bag containing the wet diaper out to the garbage cans in our backyard.

If you've been continent your entire life up until now, it does seem a very strange way to live all of a sudden (a twilight zone?) Eventually, you slowly come to accept it. You may have some periods of depression because you want to return to what you were before. I also had to work through my wife's own acceptance but with time, she mostly does. Without this site, it can be difficult to navigate because your better half may not want to discuss it or not have the same understanding of what you're going through. But this site has a number of folks that endure much more than I do and provide helpful advice.

Finally, be sure to work with your doctor to arrive at the reasons for your incontinence. Mine was due to nerve damage because of years of higher than normal glucose levels. But there are many other possible causes, including spinal injuries. Many go years without realizing they have diabetes for example. So be sure to follow up with the doc. Good luck with your new journey.

It does get easier but it will take time. First you will have to experiment with enough different diapers until you get to the point of being able to trust that that what you are wearing will not leak. Then with a few good experiences (i.e. no leaks) you will gain confidence and that will soon lead to not worrying when and where (or in front of whom) you will have a void/leak.

In addition to experimenting with different brands of diapers, you might try external catheters. I cannot use them because of my oily skin, but if they work for you they might solve your problem.

Padded53, I have much more experimenting with diapers to do. I trust my current ones pretty good while standing but not so much while sitting. I have had leaks from overflow over the top of my leg while sitting.

Wayne, I started with Depend Fit-Flex in size medium. It wouldn’t hold a full void so I upgraded to Depend Protection Plus from Costco. Though it obviously has more absorbent material (wider and longer pad) it still wouldn’t hold a full void in any position other than standing. That brings me to my current protection which is a Walgreens Certainty Tabbed Brief in size medium. It will hold a full void while standing and usually while sitting but gets overwhelmed occasionally with the flow volume. I think it doesn’t absorb fast enough and, as I said, spills over the top of my leg. I have some experimenting to do.

Yes, those time consuming situations do come up more than I would like at work. Some I can plan around. Others not at all.

Right now I feel like I’m at the minimum protection necessary, with no margin for error. And wetting while in any other position than standing makes me super nervous.

I look forward to trying more premium tabbed briefs. I’ve been eyeing the Abena M4 as a possible next as well as an ultra absorbent for road trips, maybe the North Shore Megamax. Though the Megamax is really expensive.

I feel I definitely have some work to do still on avoiding “pee face”. But I am getting better. The hard part is that it hurts when starting and stopping. Also, it takes a lot of concentration to regulate the flow with what little control I have so that there is no pee spray noise. It’s difficult to do especially while trying to have a conversation.

“Resistance is futile”, yes! It definitely comes back more painful and intense in a few minutes. But isn’t it human nature to struggle against a foe, even if the struggle is futile? I just feel like I’m not actually incontinent and am being lazy unless I actually hold it until I literally can’t any more. Maybe acceptance will come in time.

Fortunately my wife seems very accepting. She saw it coming before I did when she noticed I was going to the restroom a lot more than I used to. She even mentioned it to me but I was in denial. Well the situation suddenly changed for the much worse and I can’t deny it now.

I have started seeing a urologist and already have a second appointment set up. The urologist did say already that my symptoms don’t point to anything malignant.

Patrick, I really can’t wrap my head around using any kind of urine bag. That is just so gross to me. I saw one filled with icky dark yellow pee when I was a kid and can’t get that image out of my mind whenever I consider it. But if they work a lot better I might be able to convince myself to at least try it.

It gets better. It really does. I’ve had my struggles over the years but I went from hiding in my apartment to today I went out for tea with a friend and to pick up prescriptions. I changed at Starbucks with no issue. My incontinence is from an accident where I fell down an escalator. I broke my ankle in 4 places and after 7 surgeries had my leg amputated below the knee. From that fall I damaged nerves and now have a paralyzed neurogenic bladder. Having a diaper you can trust is absolutely key. Store brand ones don’t work in my opinion. You mentioned abena - it’s a decent diaper and will probably work well for you. I wish you luck and encourage you to keep posting. This place is a lifesaver.

justej wrote:It gets better. It really does. I’ve had my struggles over the years but I went from hiding in my apartment to today I went out for tea with a friend and to pick up prescriptions. I changed at Starbucks with no issue. My incontinence is from an accident where I fell down an escalator. I broke my ankle in 4 places and after 7 surgeries had my leg amputated below the knee. From that fall I damaged nerves and now have a paralyzed neurogenic bladder. Having a diaper you can trust is absolutely key. Store brand ones don’t work in my opinion. You mentioned abena - it’s a decent diaper and will probably work well for you. I wish you luck and encourage you to keep posting. This place is a lifesaver.

Thanks for the assurance. So far I haven’t really had the option of hiding. I’m the sole provider for my wife and kid so I MUST go to work. But I have already had to turn down a play date at a dinosaur park (nature trail hike with life size Dino sculptures) for my kid because I knew I would be away from a bathroom for too long. That’s affecting more than just me and that’s unacceptable. I was still using Depend pull-ups when that happened though. I don’t know if I would have risked it with the Certainty brief but I might have tried. I would like to have something that would last me through two heavy wettings though. I feel like that would get me through an hour and a half on my worst days, long enough for most circumstances.

Has your volume increased dramatically? Or just frequency? The Seni super plus will hold two voids, the Seni Quattro will hold about three. I have tried everything out there. The Seni diapers are also inexpensive relative to other brands, and very quiet.

Welcome nomoore! That is an excellent first post.

It really does get better, but it takes time.

You will need to experiment and test different diapers to find what works best for you. In the privacy of your home, test your diapers to find their limits. Even pour water into them if you need to. That will provide you with a better estimate of what you can expect from your diaper while in the workplace. Personally, I always wear plastic pants (diaper covers) when away from home. That provides some extra security in the event your diaper leaks and also will provide some much-needed emotional reassurance.

The most important factor in finding the best diaper is how well it fits. An expensive diaper will not perform well if it does not fit you well. "Fit" includes having snug (but not overly tight) leg elastics.

People will not know you are peeing in your diaper unless you have "tells" that give you away - such as making a "pee face" or post-pee shivers.

As for "humiliation," never feel embarrassed for a medical problem you cannot control. Of course, it is very personal and private.

As to hating it, I like to say "Be thankful for your diapers. Think how bad it would be if you did not have them."

We all have different favorite diapers. Several good ones have been mentioned, but there are many. I like BetterDry. Just choose one and try it out.

You have found a great group of very knowledgeable people who understand everything you are going through. Ask any question. If it embarrasses you, send one of us a PM.

--John
(double incontinent)

Rothpirate wrote:Has your volume increased dramatically? Or just frequency? The Seni super plus will hold two voids, the Seni Quattro will hold about three. I have tried everything out there. The Seni diapers are also inexpensive relative to other brands, and very quiet.

My volume and frequency varies a lot from day to day. It partly depends on how much water I'm drinking and also just how my bladder is acting. Some days I have more frequency with smaller voids. Other days I have less frequency (though still frequent) with larger voids. My urologist did an ultrasound (I think?) to measure how much was in my bladder after I voided. She said there was a little (110cc) but not enough to worry about me retaining.

If you're wondering about volume and frequency vs before my incontinence, I don't think much has changed for volume. It would vary a lot but I would certainly have some large voids. Regarding frequency, I didn't realize it before (denial perhaps) but I was already having increased frequency symptoms for years before it quickly turned into sudden strong urges that hurt and are uncontrollable within a few minutes.

Thanks for the recommendation on the Seni diapers. Inexpensive is good in my book as long as they do the job. Ability for 2 voids would be nice for a buffer where I can leak a bit and then be confident in a full void. 3 voids would be good for long trips in the car, though I can't imagine how bulky it would be after 3 voids.