The mental impact of incontinence.

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Like everything in life, this condition that we all share is part physical and part mental. I for one feel that the mental side of all of this is overlooked by the vast part of the medical community. No doctor has ever asked me how all of this is making me feel. No-one stopped to think about the crippling anxiety that this causes someone my age. I already dealt with a mild avoidant personality before all of this. I don't like putting myself in a position where my emotional integrity could be hurt by others. It is not that I don't feel love, but rather that people that I have not emotional connections with don't have any priority in my life. For me, this means that when things like what has transpired happen to me then I would rather just shut down and hide from it. But life does not allow for that.

Even now with this big test coming up this week, I am stressed. Part of me would rather just get it done.
The other part wants to hide from needing a test like this altogether.

As someone that studied psychology in college I know and see all the signs of anxiety building up in myself. I wish it was easy to overcome it. I wish the doctors took this into account when treating people.

I know I am not the only one that incontinence has had a mental impact on. But life has to move on and through all of this.

 

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Hi FLGuy, I'm just thinking here, but maybe the next time you see the doctor, just look him/her straight in the eye and say, "Doc. Do you have any idea of how this incontinence is making me feel?" The thing is not to wait for a doctor to come right out and ask you but for you to turn the tables and ask the doctor and then get his attention by talking about the anxiety that this is causing for someone your age.
I think doctors probably expect us to take for gospel what they tell us, then we thank them and everyone goes on his merry way. They do not expect us, as patients, to say, "well if it were you in my position what would you do? How would you feel?" I have been known to ask someone what would you do if you were me? That may bring 'em up short but hey! It's a message that what they are telling you is not the quick and easy answer they would like to think they are dispensing.

 

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Hi FLGuy, I'm just thinking here, but maybe the next time you see the doctor, just look him/her straight in the eye and say, "Doc. Do you have any idea of how this incontinence is making me feel?" The thing is not to wait for a doctor to come right out and ask you but for you to turn the tables and ask the doctor and then get his attention by talking about the anxiety that this is causing for someone your age.
I think doctors probably expect us to take for gospel what they tell us, then we thank them and everyone goes on his merry way. They do not expect us, as patients, to say, "well if it were you in my position what would you do? How would you feel?" I have been known to ask someone what would you do if you were me? That may bring 'em up short but hey! It's a message that what they are telling you is not the quick and easy answer they would like to think they are dispensing.

I have brought it up with my physical therapist quite a few times and we deferentially talked about it.

One of the big things was when I was just starting to deal with issues with my GI doctor. She acted as if should just suck it up and keep working through all of this until my Physical therapist explained everything to her. I tried talking to GI about all of the emotional impacts of all of this but what shut down by how she reacted.. It was very much a not my department so find someone else type of thing.

Even now her schedule is too full for me to get in to see her. So if I have issues after this test on Wednesday then I will have to see the PA-C that I saw before that was great. I also have to reach out tomorrow because my prescriptions need to be renewed and then need approval first now so.

This year I am not taking any crap from anyone.. I have enough of that with all of the issues I am having. If one doctor is not helping then they are gone.

 

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When my bedwetting came back and my daytime incontinence became a problem I was very down at first. My wife who is very pragmatic told me to stop moping about, wear nappies and get on with my life. At first this came as a shock and I thought she was being very blunt as usual. Actually it was the best approach for me. True it was something I had to get used to but over 8 years on it is just a way of life and not a big deal. There are times when it still gets me down but I refuse to let my incontinence rule my life. My wife always shakes me out of it by telling me she would rather have me as I am than not at all.

 

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When my bedwetting came back my wife and I talked she is like Steve's wife just diaper up and move on.I didn't know about my having autism till tested several yrs after my incontinence returned.

 

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As someone who is only in the 4th month of incontinence, Please stop minimizing people who are just starting to deal with incontinence. At month two to the day, I was ready to commit suicide over my incontinence related to my prostatectomy.

For me, I have found comfort or relief in
1) things should get better, but at 4 months I am leaking way too much (and don't ask me about how much and what I drink) I also do my kegels and walk.

2) this forum has people who have shared their journeys (I no longer call them stories) where they have taken 6 months or longer to get dry or dry enough.

3) I have found other internet articles that state the range to get dry after prostatectomy to 6 to 18 months. Several articles that I read previously had stated that if you were not dry at 3 months, something else like male sling or AUS (artificial urinary sphincter ) would be needed.

Allow though there are several problems that cause incontinence, beginning the journey takes it emotional toll. Telling someone to suck it up and put on a nappy does not help. Telling them how your initial journey and that over a months you were able to deal with wearing a diaper to handle your incontinence helps.

The initial shock of incontinence is not a day or week or even months - it is something that many people have trouble adjusting to.

 

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I think we all deal with incontinence differently. I had terrible anxiety and insecurities until I had confidence that the medication and protection worked. Once I knew I could go about my life without others knowing then the initial anxiety went away.
I'm not saying there's not times that something happens but after years of coping with incontinence the mental issues are very minimal if not nonexistent.

 

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As someone who is only in the 4th month of incontinence, Please stop minimizing people who are just starting to deal with incontinence. At month two to the day, I was ready to commit suicide over my incontinence related to my prostatectomy.

For me, I have found comfort or relief in
1) things should get better, but at 4 months I am leaking way too much (and don't ask me about how much and what I drink) I also do my kegels and walk.

2) this forum has people who have shared their journeys (I no longer call them stories) where they have taken 6 months or longer to get dry or dry enough.

3) I have found other internet articles that state the range to get dry after prostatectomy to 6 to 18 months. Several articles that I read previously had stated that if you were not dry at 3 months, something else like male sling or AUS (artificial urinary sphincter ) would be needed.

Allow though there are several problems that cause incontinence, beginning the journey takes it emotional toll. Telling someone to suck it up and put on a nappy does not help. Telling them how your initial journey and that over a months you were able to deal with wearing a diaper to handle your incontinence helps.

The initial shock of incontinence is not a day or week or even months - it is something that many people have trouble adjusting to.

I have defiantly had some dark times with all of this. I even had nightmares of being at my own funeral. My thoughts went to a very dark place quite a few times. The big things that save me are my faith in Christ and my mother. Having watched her deal with many deaths I could not do that to her. My goal is to have a better understanding of myself. To see myself not as a broken vessel, but fearfully and wonderfully made. To see this time as a building block for who I will be.

I think the big thing that made this somewhat less emotional for me is that I have been a bedwetter since I was fifteen years old. This year will be my 21st year of being a bedwetter.

Now once I started during the day it was both at once. The bowel side of it is very stressful. Like I don't really leave home unless I have to. I have no quality of life most days. And sometimes I still go to the dark place where I question why God ever let me live through surgery.

But I will say this, Nothing about what is going on with me now is okay. If I did not have the support system of you'll, my nanny, and my mother to vent to I don't know that I would not have just run off and disappeared. So, No. I am not okay but it is getting less hard to accept as normal. Last night for instance. Got dressed for bed, full Dry24/7 with two boosters. Fell asleep, an hour later work up with bad stomach pain, rushed to get to the bathroom but did not make it. Ended up having to take a shower because it was such bad diarrhea that I was leaking. That type of thing happens to me all the time. I have just been lucky to only have a few blowouts like last night.

 

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I haven't had a dry day in I don't know how many years. By that, I mean a day in which I haven't had at least one accident. I always have slow leakage after voiding my bladder, but when you are wearing protection, it's contained; the actual loss of bladder control that I have to deal with is very manageable. Usually. About a week ago, (not for the first time), I was having a very wet day- repeated episodes of my bladder emptying itself. I was out doing a grocery run, and had to come home to change into something more absorbent. I do carry a change with me in the car, but I hadn't replenished the mid-grade absorbency product that I wanted to use.
Anyway, it occurs to me on those days, that my issues aren't as trying as what some of you folks describe. I am reminded that, if my incontinence was this severe on a daily basis, my life would be effected to a much greater degree. My restrictions are minimal- I can't swim in pools, I can't work in a job that doesn't allow immediate access to a bathroom, and I have to wear protection all the time. The most positive thing I can say about wearing incontinence products is that I'm glad they're there when I need them. When I look only at that, and not the negative side, I see how blessed I am. If I bemoan having to wear diapers, then, that's where my thoughts reside. I know that not all of you are dealing with problems as easy to manage as mine- I rarely worry if what I am wearing can bear another wetting, but I know that many people do have to concern themselves with this.

 

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@thudson1965 Superb post - agree completely!

I think the nature of one's incontinence (which is highly variable) is also a contributing factor in how big the mental factor is. Dealing with after-dribble, IBS flare ups and the occasional urge accident was a very different beast to dealing with what I am now, which is heavy leakage on a daily basis.

Back before my issues worsened, I was using less absorbent (and therefore less bulky) pull-ups and nappies most of the time because big accidents weren't daily occurrences and even when I would have IBS flare-ups and have to wear the bulkier products, it wasn't every day. I could mostly get away with using one product during the course of a working day, change for doing things in the evening and then wear a pull-up overnight for the inevitable leakage after visits to the toilet in the night. What also helped was the fact that, unless I was away from a toilet for more than an hour or so or had any big IBS flare ups, whilst my after dribble was significant, I was still using the toilet normally.

Since having to wear 24/7 for more significant issues, it is a very different kettle of fish mentally. There's the initial knock to my self-esteem of the loss of control. I feel like I'm a small kid all over again, never making it to the toilet in time. There's also the added stress of leaks that comes with. Prior to this kicking off, leaks were never a daily concern. I've ended up compensating for the leaks by using bulkier products and plastic pants/coverings all the time but then this brings the added stress of being 'found out' due to the fact the products are less discreet. There's also the issue of changing and disposal. Changing takes time and there aren't always great disposal options. Also there's the fact that you end up having to carry more stuff. I can get through three-four nappies in a bad day and one overnight. Therefore, even just a couple of nights away means I have to bring a significant amount of stuff. Plus, don't even get me started on the disposal issues where I live at the moment. One rubbish collection every two weeks means I essentially have two huge bins full of products by the time bin day comes around.

Now, I'm dealing with it okay and there are far worse things in life to have to deal with. Plus, I'm hoping when things are back to normal and I can finally see a urologist things can improve. However, I guess my point is that incontinence can come in many forms. I was very much just wearing a nappy and getting on with it with my previous issues but since my issues have worsened it's definitely taken its toll on me mentally.

 

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Sci_Fi_Fan... Great reply.

 

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Sci_Fi_Fan... Sorry, hit the wrong button.
Even the last few hours have been crazy. I have been stressing a lot over this test tomorrow. One thing that you said made me think of how lucky I am. Two weeks between bin pick up??? That is crazy. Granted the garbage man was running a week behind this past week so I had three bags of stuff and our bin is a two-yard dumpster (1.82 Meter) but it normally goes every week and is never full. It just happens that on 1/28 the new neighbor downstairs was having a birthday party so they had a bunch of trash to put out the day the bin was emptied last on 1/28. There are a million small things about having this issue that can make us go crazy and that is what I wish the rest of the world would see as normal. When I say that my support system is critical to me I mean I am on here all the time reading, and spend an hour a day talking on the phone with my Nanny and my mom about how things are going. Without that, I am stressed and not in good shape mentally.

 

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There are definitely moments it hits. Even though they are biologically relayed, i see my nighttime and daytime incontinence as separate in my acceptance process. I am all good with wetting at nights at this point, diapering, and no concerns. Daytime, i go through periods where i convince myself. You don't really need the diapers. You would be fine without them, etc.... So i return to underwear. Then I hit moments like last night, where i flood myself in the bathroom no less, trying to get to the toilet. Then i am filled with self anger, and shame. However, if i had just had a diaper on, and i soaked it, it wouldn't have phased me. Acceptance is hard and a process. I know i go back and forth between denial, anger, acceptance. I will get there eventually.

Like others have said, i think having a good support system is essential. I also find that the less i keep it a secret, the less shame i feel. I no longer feel like i have to hide, if those close to me know. I don't have to constantly check the back of my shirt, or ask myself if my bulge is showing, or wonder what they will say if they notice.

 

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@ThatFLGuy Yeah, it's a real pain. When I started using protection I was living in an apartment block with the big communal bins that were emptied regularly so it was never an issue. At my Mum's place it isn't either as we have a bin collection every week. I lessen the impact by putting my overnight/morning nappy in a public bin on the way to work but I still have a ton every two weeks. I did consider washable products but disposables are just much more convenient even if the environmental impact is significant.

@Mightychi I get the keeping it a secret thing. Staying at my Dad's for a few days next week and he doesn't know. I don't really get on with his new partner and don't want her knowing even though it would make my life easier disposal wise if I just told him.

I think it also depends on what job you do. I feel that incontinence and teaching (or any job which entails you being in front of people for ages) really aren't compatible and I think I'll probably be less stressed about the incontinence and all that entails when I go back to studying. The kids aren't in and so teaching online I've been able to pop to the toilet whenever I wanted (but have also inevitably had accidents) which I guess also goes back to my thread re hydration vs accidents. Drank a healthy amount of water today and felt so much better but for me now hydration = accidents. I'm starting to accept it rather than rail against it but there are so many little things that build up.

I also know for me that a big part of it is my wider physical health as well. I was able to do a fair amount of running and I'd get an ego boost from the fact that 'sure I wear nappies/pull ups but I'm fitter than most folks around.' Now I just feel that my body's failing. I'm 30 in a few months but feel like an old man.

Still, I've got it a lot better than other people. I just plan on going back to academia so I'm less concerned about everything.

 

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I am lucky my friends and family all know about my incontinence and don't see it as a problem. It is certainly easier to deal with as you get older, but then aren't most things.
I think if I had been younger and still single then I would have had a real problem accepting it.