To hold or not to hold?

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Hi everyone,
For a while I stopped using protection during the day while at home because I usually have enough time to make it to the restroom if I'm close and was hating using pads all the time, never mind the cost. But I noticed my urges have become more frequent, and I feel like that is in part because of fear of accidents when I am not protected, make me prone to go straight to the restroom rather than trying to hold it. Also at night I have been having more issues,changing a pull-up halfway through the night. A couple nights ago I decided to put a pad inside the pull-up to try to make it last longer but I was very sad to wake up at 2:00am with the pad and pull-up saturated, along with my pajamas and the bedding. I have finally ordered samples from northshore for heavier protection, Go supreme pullups and the mega max air. But what do you guys think about the urges? I have about a minute before having an accident. Should I use that time to try Kegels and hold it until I can't? Or should I just go to the bathroom as much as I can? As you know, the urges are so strong they can drive you crazy, and then it isn't that much actual urine. I am just afraid of it getting worse and losing all control. Thanks!

 

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It’s hard to balance, isn’t it? If I’m at home I’ll try to hold right near the loo, and wear protection. If I’m out, I go when I need to. Take this with a grain of salt, because my incontinence isn’t getting better.

 

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it might be time to switch to a diaper Pull-Ups don't offer the same protection

 

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Sarah,
Glad at the same time not so glad to hear from you as it’s been a while…. I have been dealing with this for a long time Neurogenic Bladder / Detrusor-sphincter dyssinergia plus interstitial cystitis both causing OAB & painful spasms at pain level of 5-6 out of 10 most days.
I’ve always exercised, tried a number of diets to ease the symptoms, but honestly it seems my body goes through its own cycles, similar to losing the lining of the bladder in bits & pieces no matter what I’ve tried…
More often than not I get full bladder voids doing almost nothing, climbing out of bed, standing up after sitting through a movie, even climbing down out of my Jeep or up out of my Wife’s car, hearing water running is a sure hit! Other times when my bladder is having its “FITS”,pain level is up to 11, like a raging fire inside 24/7. When I can measure the output it can be as little as an ounce or two and burns like hell just to get that out! They told me it was due to the cysts on my bladder wall, but even after the removal surgeries I’ve experienced no relief. I literally did so many Kegels they told me to stop as I was only increasing the pressure within my bladder & kidneys.
Have you tried using a diary to record symptoms? I found it very useful to present to the urologist. At the end of the day they just don’t know what’s going on inside anymore?
Something you might try is to use your pads to reduce stress, and keep up with your Kegels, as stress like that can have all kinds of ill effects. Back in the early days the fear of being found out what I was wearing caused me nothing but ulcers & extreme heartburn, I was only making myself sicker.
Do whatever makes “YOU” feel better, both physically & mentally ! It takes quite a while for the bladder to shrink perceptibly and when you’re ready, take your diary to the doctors and maybe they can pinpoint what’s going on for you!
I truly hope other things are improving for you, wishing you the best!

 

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I definitely find that when I’m thinking about peeing all the time, I pee more, and experience increased pain and anxiety. If I were you, at home, I’d wear protection and practice using your Kegels until you have an accident. Build them up. Get to know your limits. Doing this, I was able to go from 1-minute warnings to typically 3-5 minutes warnings, thanks to Kegels. If I’m at a movie, i can maybe wait until tte scene finishes now. But it takes time and practice. No matter what, I still panic and find the closest bathroom, but without running - now I just walk really fast. My least favorite kind of stores are the ones like Home Depot where I am at the other end of the store from their single *public* restroom. You know they have tons of worker restrooms behind all their closed doors. Why is that not illegal via tte ADA, that stores that huge are allowed to only have present one public bathroom?! (I was just at a Home Depot for four hours and yesterday I was at Michael’s, Hobby Lobby, and JOANN: all the same with the one bathroom)

 

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Hey @Snow!
I couldn’t agree with you more as my Wife and I just finished a gut rehab of an 1862 Queen Anne style farmhouse. I don’t know where we actually spent more time, the farm house or the Depot!
Are you undertaking a big rehab or renovation project? If so please reach out, I’ll let you and my Wife discuss how it went! Suffice to say a 6 month project ended up almost 2 years, and I’ve been buying renovating & selling old homes for almost 20 years as side projects since according to Courtney I have a severe allergy to sleep! The real zinger was when our neighbor, the President of the Garden Club, unbeknownst to us attempted to have our house declared a Landmark Home. This was after we had already gutted the entire interior and added a 3rd floor! Most importantly we beat him on the garden tour again! That little plaque would have ended up costing us over $200,000, + put everything back to 1862!
I apologize for my story, thought I’d add some humor, but this was the first time my wife actually said your diapers are a huge advantage after walking out of the one bathroom that was open. For some reason they have a hard time keeping that staff position occupied, unlike the bathrooms !

 

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@DPCARE the idea of having to switch to a 'real' diaper is very upsetting, not sure how you felt at first? Last night I tried using a booster in my pull-up and it worked, no leaks! But of course I would have to see over time if it continues to be enough. I did get a sample of mega max air to try but am scared to actually try them lol!

 

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if it works that's great but there may be a time you might have to step up to a full diaper all I am saying a pull-up does not offer the same fit coverage and protection of a full diaper

@DPCARE the idea of having to switch to a 'real' diaper is very upsetting, not sure how you felt at first? Last night I tried using a booster in my pull-up and it worked, no leaks! But of course I would have to see over time if it continues to be enough. I did get a sample of mega max air to try but am scared to actually try them lol!

 

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@Sprung87 Sounds like your spasms are worse than mine. I do have pain sometimes but not every time I have an urge or leak. But yeah I have less anxiety when I am protected. Sometimes I wonder if I am really doing the Kegels right... sometimes I will start a Kegel and think I'm holding it, then realize I am not holding it anymore when I thought I was. And Kegels are definitely harder when I am having an urge but that's when I can feel them most because my body is screaming to just let go! As if I hadn't used the bathroom all day. Drives me crazy since it's usually less than an hour! That house sounds like it will be beautiful when it is done!!

 

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@snow I definitely relate to the frustration of single public bathrooms! I have literally had accidents where I would have made it fine because of that. I will keep working on the Kegels, yeah I think that is good advice for when I'm home.

 

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Sarah,
It sounds like you are on the right track experimenting with protection for your night time issues. Incontinence requires a lot of trial and error to find management techniques that work for you. You may find you prefer a combination of products depending on the situation - day at home vs day out and about vs overnight. I know how transitioning to a “full diaper” can be upsetting, but you might find it to be better than wet pajamas and bedding.

 

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@Sprung87 Thank you for sharing story!!!! I love stories! I’m glad you made it without historical designation!

 

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@Sarah060486 I know it’s not easy to switch to a real diaper I have tried to wear pull ups but never last long or need to change. I have gotten used to wearing diapers it really isn’t that bad but I still remember the first time

 

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@Sarah060486 Pull-ups still work for me. I, too, do not look forward to diapers. I think as long as my spine stays stable - which it isn’t likely to do longterm, I’ll be okay. I have neurogenic bladder so my incontinence comes from severed nerves to my bladder. The nerves that work at night are totally demolished, though they wake me up every 5-60 minutes. During the day I have all the typical OAB problems, pain, spasms, frequency, etc. but I’m verrrrrrrrry grateful I retain most control during the day. And I’m grateful that Kegels have helped me; I had a great physical therapist. I thought I was doing Kegels my whole life, for sexual benefits, but what I learned in PT increased my understanding of Kegels triple-fold. Hang in there; I promise you’ll get more used to it with time. That’s what I wish someone had told me when I first became incontinent. I didn’t have our forum yet, not for several years later, actually.

 

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Everyone is different lol as I am other one who would say when I made the switch from pull ups to actual full diapers my world opened up. Didn’t need to worry anymore if the protection I am wearing would be able to handle it all. So for me that was hugely relief. However I get Snow and Sarah stay with pull ups for as long as they work for you.

That I think is one of the lessons to come out of incontinence for people is to own where you are at and don’t apologize. It is a medical problem and really not fun to deal with however it could be a lot worse is how I look at it.

Just own who you are as a person.

With love

Jason

 

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Hey All, not Y’all yet I ain’t done been down here long enough this time around! I say all because as unique as each and every one of us is in our day to day lives, I’ve really come to appreciate the simple fact is we are all here to share our experiences, help those that are new to all of this and if we’re lucky take away a little nugget that makes our day to day lives just a touch better in some way.
I was both fortunate and unfortunate to be thrown in the cold pool headfirst in an instant so to speak! One minute life is just cruising along all sunshine and roses, the next I’m trapped in this nightmare that was something for “Old People”! Walkers, braces, casts and of course thick cloth diapers that were just about impossible to minimize or hide. But it’s in those situations that we all face to some degree as we move through life that make us take a deep look inside and determine what kind of person we are. I was very different person as I climbed inside my new car for a test drive, than I was when they cut me out. Trying to keep it short, I found that life doesn’t really care how hard you work, how smart you think you are etc. etc. it really boils down to how you handle/ manage change. Change is one of the few constants. Over the years since I’ve learned to slow down just a bit and enjoy every moment possible as we just never know!
Going BACK to where I started, in 1987 all they had was cloth diapers that could withstand a full bladder, or a bowel accident.Disposables we’re like a couple paper towels glued to a garbage bag, only louder! For me it took about two years for the nerves to heal so I had bowel control again, and what a moment that was!!! I could use a catheter and bag & wear my old clothes again, it was such an incredible feeling! I felt PERFECTLY HEALTHY!
Over time in order to keep my most important “MAN” parts working, I had to give up the catheters, but by then everything had changed so much a Mega Max felt like a thong in comparison to what I had used! Just guessing on the thong part, but I’m sure you understand my point.
The biggest take away I’ve found is that if I’m comfortable, ie not worried about leaks, or messing up a friends couch or car seat etc. (Yes I’ve done these all). I’m a much better husband and friend to those around me. If I walk around waiting for the other shoe to drop I’m miserable. We all have to manage this stuff and all I can say is start with yourself. Even wearing a Mega Max under just a pair of shorts, I still manage to shock a new Doctor, Nurse, Technician etc. when asked to undress. It’s in all my charts but even those you would think would have their “Diaper Radar” on don’t notice anything!I dress comfortably, I no longer waste time looking in the mirror more than once just to make sure I zipped that dang zipper!
I hope that all of you that find that this isn’t going away, will find the love and comfort that can only come from within yourself and just get busy living your best life! All the other love we’re lucky enough to share is just another bonus!

 

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@Sprung87 Nicely expressed!

 

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Powerful testimony Sprung87, you show great strength despite adversity!

 

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Hi Sarah, I'm fairly new here but not new to IC. I have experienced (I almost used the word suffered but chose not to) Urge IC for almost 10 yrs. My management of same is at the best it has ever been and I tell myself each day I am finally in control. I use an external sheath connected to a small cloth covered bag carried in my trouser or shorts pocket. Very discreet and respectful. However I often ask myself the same question you ask "to hold or not to hold". I wondered if by not holding my control system would become lazy and stop making decisions to hold when I perhaps was in a situation of no management. Over time I have chosen not to hold. It is less stressful and I think it is more natural for me to just let go rather than fight the urge feeling and sensation we get. My female partner who is a Dr. has just started using an alternate method of IC control. It is called a Coowee (Coo-wee) which is an inserted reusable self-managed urinary incontinence aid. She has only been using this product for a couple of weeks but after sampling the 3 grades available and established what was best for her, she has in this short period reported good success.She of course won't be applying the same motto as I to your question "to hold or not to hold"

 

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A lot of good things said.

@Jwh51 good advice. Having inner strength and confidence is important. Hard to achieve and hard to hold onto. I have to look at how one is doing not at each moment but, in a larger picture (weekly, monthly) otherwise, small setbacks can overshadow larger views. Yet, yet, at the same time, finding small moments to celebrate are important.

@Sarah060486 and at-all, I also fear loosing what control I have, and there are days/hours I see wearing absorbent underwear or diapers as giving up a measure of adulthood and independence. It's emotionally draining, it's fear of not measuring up, and fear of what others think. We (Society) has painted an unrealistic view of the perfect life and we cannot measure up to it. I wander, back to diapers. Yet...It's not, I try to tell myself that underwear/diapers is a tool that allows me to do the things I want and not miss out on family or whatever is out there to experience/learn/see.

I have an autoimmune disease that takes more time and energy than I want. Incontinence should not be what I focus on.