How long did it take you to adjust to incontinence?

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Hi everyone, first off I am so glad I found this forum, it is so good to have someone to talk to about a topic no one talks about! I'm looking for some encouragement as I woke up shaking realizing my pull-up was completely saturated. My problem is more in the day than the night, seems to be worse with gravity, standing up. Usually at night is very light if at all. Just struggling with embarrassment though thankfully my husband didn't know, and still afraid to bring it up to him..I hope whatever is going on isn't getting worse! I need to make a doctor appointment to see what might be the cause of this besides pelvic floor weakness from having delivered 4 babies. Thanks for listening!

 

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Welcome, please ask questions, lots of help here! It seems one never really gets fully adjusted, but you do learn to work with it, personally I tried everything I thought that would work, plus worried till it effected my mental health, then I finally said I need to concentrate on the pain, as my urology PA wrote in my chart, this is lifelong.

 

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Tough question as I never had to adjust to incontinence. Ive wet at night my whole life and struggled constantly during the day. Been in diapers my whole life at night and 24/7 now for 18 years. Just a condition I and many others just deal with.

 

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It is a big adjustment at first, I was only 26 when I was crushed in a car wreck. Initially I lost both bowel & bladder control and in 1987 we had nowhere near the selection of products to deal with it today. I needed cloth and plastic pants 24/7, nothing else would hold up more than a few hours. After 2 years I regained bowel control, after that the bladder stuff was piece of cake! About 1990 new & better products started coming out all the time and got better & better with time. My suggestion is see what the doctors can “REALLY” do for you, then figure out a long term strategy from there. In the interim use whatever makes YOU most comfortable!
Best of luck!

 

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...besides pelvic floor weakness from having delivered 4 babies.

Try looking up "bladder prolapse". This is a common problem for women and can be treated. Ask your urologist for a referral if they can't do the job.

I am a 75 y/o male with "overactive bladder" (OAB). Both men and women can get this condition. I went through several therapies and medications until I had a neurostimulator implanted. It is commonly called an "InterStim". There is more than one brand available these days; mine is made by Medtronic, and it looks like my heart pacemaker.

May God guide you on your journey!

 

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Sarah, One thing I failed to address is the fact that you have to hide this episode from your husband. I can speak from experience that if your husband loves you enough to bring 4 children into this world with you, together you can find a way to work through this or in to it depending on what’s causing it. I imagine he’s already seen you gain two or three pounds while carrying your children, so he can’t be completely ignorant to the beauty and complexity of your body!
I can tell you that my first wife (I naively married my High School Sweetheart) both of us far to young to make that type of commitment, when I still had 5 more years of school ahead of me while building a couple of businesses from scratch (12-16 hrs. a day 7 days a week) doesn’t allow the proper time to maintain a good marriage.
LSS, She turned out to be the biggest hurdle to get past, just couldn’t accept her young husband stuck in diapers all of a sudden. While going through over 20 surgeries to put me back together once I came out of the induced coma. I ended up buying her off just to get rid of her and her constant negativity. By far the best choice I ever made!
I dated quite a bit before I met my wife of over 20 years, and I can say I never allowed my incontinence to be an issue, or handicap and was not once rejected because of it! Even my ex-Wife begged me to take her back once she was out in the dating pool for the first time as an “Adult” and realized nobody is perfect.
My wife and my life are AMAZING!!! This incontinence is only as powerful and disruptive as you allow it to be, and as I’ve said I never “Empowered” incontinence to run my life, it just became one facet of many that we as humans live with every day.
It sounds like you’ve got 4 little MONSTERS to shape and get ready to face this world we live in, presenting this to your husband as the medical condition that it is will hopefully give you the adult teammate to walk at your side as you work through it. Partners can be amazingly perceptive, and often know much more than we think. The good ones often wait for you to bring it up as to not cause you embarrassment or discomfort.
You just don’t know until you rip that bandage off and see where things stand, so you can plan to move forward. A good sense of humor comes in handy, as well as developing a thick skin regarding dealing with it.
I apologize if long winded AGAIN! Just hate to think you’re suffering through this not only alone, but needing to hide it!
Wishing you the best!
Tom

 

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@Sprung87 Thank you so much for your concerns about my husband... he is loving and supportive, and has known somewhat of this but I don't know, I just feel like I would be mortified if he saw me in a wet pull-up.. I guess I'm afraid it would affect our intimate relationship negatively...not 'sexy'to wear a diaper.

 

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Well, for me, it's been 33 years and counting...
to be honest, it hasn't been a difficult adjustment for me, because it wasn't as severe for the first number of years, but got worse as time went on. Another factor for me is that I had worked with physically disabled adults prior to my accident and knew what catheters and incontinence products and things like braces and hoyers (?) are for- they're ALL medical devices, so when I had a head injury, I figured it was all going to go away- in six months... (yeah, I believed that- until the seventh month) Anyway, I had too many other things to worry about, including vision problems no one could diagnose or treat, a very severely broken ankle, and insane headaches, so my need to wear protective underwear wasn't the most significant problem. In fact, it was a solution. I eventually accepted that my urinary incontinence would probably not resolve itself and the stigma of wearing or purchasing adult products was behind me, so, now that it is as bad as it is, well, that's just life, I guess. And really, it's only as big an issue as I make it. But... I am still surprised when I stop to think about it, because I REALLY would never have guessed that I'd be dealing with this. It's still better than losing my sight or one of my feet.
Sorry, that got long-winded. To sum it up, and there are others on here who have said similar things- once you get past the stigma, life does get better.

 

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Well - the question is what is meant by "coping with incontinence" or by "getting used to it". For me, this was also a thing that occurred relatively suddenly.

The incontinence was my smaller problem because I had a lot of pain. However, at that time I didn't think too much about it because for me it was just an illness that would eventually disappear.

It only became really bad when after half a year there was still no improvement in sight and nobody really knew why the problem existed with me at all. Then I slowly realized that this might be a problem that will accompany me for the rest of my life.

This depressed me very much and I really needed a while to come to terms with it. It wasn't a physical problem, but a psychological one, because it made me feel broken and handicapped. It took a while until I could accept that for myself and I realized that this is not the end of the world.

 

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Lifelong issues but it took a fairly long time to adjust both psychologically and practically to an almost complete loss of control. Plus, being accompanied by mobility issues it means changing is harder when out and about if there isn’t a changing places facility.

It does get better over time though. I’m not sure if that’s a good thing or not really. My Mum said she doesn’t know how I cope with it the other night but it’s just become one of those things for me now.

 

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I’ve had intermittent problems with bedwetting for a couple of years and consistent and unfortunately slowly worsening day time issues for about a year. It took me maybe 6 months to stop beating myself up about the bedwetting and a bit longer for the daytime incontinence. For the most part now, I don’t think much about it. Protection has become a routine part of my life and I know my body well enough now to anticipate when I need to change, which minimises embarrassing leakage. I still have the odd shame moment when having an accident in public or if I feel that my wet incontinence product might be visible under my clothing, but I just remind myself that I can’t help it and get on with my life.

 

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Yeah that's what I'm thinking, at this point I am conscious of it almost all the time and wish it could be off my mind and I wouldn't be worried that someone might see a bulge or anything visible under my clothes, and of course the fear of leaking every time I have an accident is there.

 

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I hear you. I was so paranoid at the beginning and my anxiety made the products feel thicker and wetter than they actually were. It actually took my pelvic floor physio calculating the number of members at my gym that should theoretically have incontinence and asking whether I’d ever noticed any of them wearing pull ups, nappies, etc for me to finally relax, as the answer was no. Even though it feels awful now, it will get easier.

 

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I’ve had a very difficult time adjusting to the onset of incontinence. It started minimally, and progressively got worse. Started last May, I think I hit my lowest point around November/ December but I’ve dug more into the medical side and figuring that out so it takes pressure off the feeling of shame and embarrassment.

My wife has generally been supportive. (except for one time when we fought and she used it as leverage against me, like what she knows, and what I have to wear during the day and to bed) My bet is your husband will be supportive and help you however you need.

Definitely see a doctor and start figuring it out. I think there’s a psychology cycle here that you will end up going through of ups and downs, and the best thing is to come here and put it out there. And I highly recommend a counselor or therapist. The moment I told someone outside of keeping it and my wife knowing, and explained how I felt there was a sensation of relief.

 

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ExploringResources that's awful your wife brought it up as leverage in an argument! That would be humiliating to me. It's just everything is costly these days, I don't think my insurance covers therapy of any kind, but definitely worth looking into.

 

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It took me a long time to accept it but I have to admit that I still get embarrassed around certain people who don't know about my incontinence they know about my brain injury but they don't know everything.probably more people know than I realize it is doable and it gets to be routine and nessessary

 

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For me, I don't know if I can say I have ever gotten adjusted to my mixed incontinence. I have had it, to a lesser degree, for a long time. For a few years prior to menopause it seemed to have gotten better. Then "the change" and now the urge incontinence is worse than ever. I've been married for almost 35 years to one of the best people in this world. Even if I wanted to I don't think I could hide it from him. Way back when it first started we had been out shopping for quite awhile. When we got home and I got out of the car the moment I stood up I realized I I needed to pee NOW and it started to just pour out of me right there in my driveway, right in front of him. For whatever reason I was afraid to move and was horrified and shocked that I couldn't make it stop! Let me add that that was only the first of many accidents that man has witnessed. Most of the leakage was due to the fact I thought pads were my answer. Now I know pull ups, the overnight ones, are my best bet. So for me it has been more of how to protect myself from leaks. Kind of a matter of figuring it out. Like you it is really bad in the morning. By the time I get to the bathroom it's game over but at least I no longer end up in tears first thing in the morning. So it has gotten better, mentally anyway. All the best to you.

 

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@Boopsie61 well so how old were you when it started? I am only 35 (well close to 36) and so feeling defeated being so young. It has been encouraging finding this forum, however, meeting other younger people with this issue.

 

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My new urologist recommended I try a new behavioral therapy, but when I saw how much it would cost and it was a very low chance of it working I opted out.

It definitely takes time to adjust. Like ma here it’s been so long since I made the transition that I don’t remember the initial period other than to say that we all go through the 5 stages of acceptance.
1. Denial that this is something requiring help until there’s no choice.

2. Anger that this is happening to me and I feel separated from the “normal” people who can go hours upon hours with no need to urinate and I cannot go more than 30-45 minutes, sometimes less than 15 minutes.

3.Hoping that one of the treatment options will work. Realizing that behavioral and diet changes don’t make an impact. Realizing that the side effects of the drugs are horrible and they don’t help all that much anyway. Realizing the other forms of treatment (Botox and Intersim) are out of my comfort level. Finding a type of protection and schedule that works with comfort, concealment, and efficacy.

4. Depression as to whether I will be able to exist in a society that habitually makes fun of this problem.

5. Acceptance came gradually with time and was helped greatly by an acceptance of my wife when I told her about this problem during our courtship.

Now 10 years into our marriage with a beautiful son it’s just part of life and I don’t think about it too much except on new techniques. Over the years acceptance crept in.

If you have a supportive partner, this is so much easier

 

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Hi Sarah060486. I would have to say it started a long time ago but only intermittently. When I was as young as my twenties if I couldn't get to a bathroom right away I would have an accident. But as I've gotten older it seems to now be a constant issue. My body gives me about two to three seconds before I start and as I've said before, there's no stopping it from pouring out of me. Thank God I'm retired now because I can't imagine dealing with this constant wetting myself and having to work too. I don't go out much except to the doctors once or twice a month. Even with that I know by the time I get home I'm lucky to have not leaked through my pull up. What really freaks me out is the times I'll leak and not even feel that I have voided. This morning I thought I made it to the bathroom ok but when I pulled my pull up down to sit it was soaked!! It never felt like I had gone. Any other morning I realize and can very much tell I am urinating on the way to the bathroom because it hurts so much and the urge is uncontrollable. My fear is that it may have happened while sleeping and that's not an issue that I've had. Has anything like this happened to you? Anytime during the day when it happenes I feel a strong spasm and two seconds latter it will start. This was different. I suppose time will tell. But I hope I answered your question somewhat. Looking forward to anyone's response. Thank you all.