Incontinence and social life

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Hi. I'm a 42 year old male suffering from incontinence and fibromyalgia.

I read many topics about incontinence here, especially about overactive bladder since this is the condition i am most likely suffering from. Although i am under urologist treatment for 1,5 year now, with lots of tests, there is not yet a definitive diagnosis. My incontinence started about 6 years ago, and due to shame and ignoring the problem it took me 3 years before i told my GP about it. He was very helpful, but what i was most afraid of happened: a seemingly never ending process of doctor's appointments, trying different medication and therapies, and undergo very unpleasant tests with no result so far.

All this time i searched for the best protection. But still, i’m stuck between shame, ignoring the extend of the problem, and the need to have a normal social life. Of course there is protection for every level of incontinence, but one day is not the same as the other. Situations can change over weeks, sometimes for the better, more often for the worse. Especially in the beginning i refused to wear thick pads. It was not so much the fear that anyone could see it but more my inner ignorance of how big my problem was. So more than once i found myself with wet trousers, and soaking pads. Embarrassing situations included.

After this kind of accidents i would order bigger protection. I remember the first time i ordered a maxi pad that could hold a full bladder and i just thought omg, this can’t be true. It affected my self conscious very much and after 2 or 3 days with less leaking i would return to the smaller pads.

Not only am i an incontinence patient, i am also a man and husband with the need for a social life and intimacy. I avoid spontaneous actions, and although my wife knows about my condition, at some point it's difficult talking about it, without being a major turn down. Talking about it with friends is no option. I'm not ready for that yet.

Many times i read in comments, as an advice to others, to just get some pads and not letting your condition affect your social life. And yes, incontinence products are a blessing and a curse and for some of us it can work out well, while others struggle for years.

How do others cope with this? Don’t you ever feel depressed and when you do can you talk to your partner about it? When you tell your friends, how much do you tell them?

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  • Posted

    I'm a lot older than you, but being made incontinent (totally) by a surgical screw up about 11 months ago when I had a GreenLight laser procedure for BPH.  My leakage is so great that heavy duty Depends are not enough, so I must use Depends pullups, sometimes with an additional heavy pad inside.  From being physically active (biking and hiking), I've become mostly inactive with zero sex life.

    The most bearable way to get by is to use a condom catheter and bag.  (The Hollister bag and tube is by far the best I've found.)  I find that the condom catheters are too sticky, making them difficult to remove in the evening, even if I've used a skin prep before applying.  At least, once I apply a condom in the morning and place the bag between my knee and ankle, I can go 10-12 hours in fairly good comfort.  (The valve to drain the bag is just above the ankle, so it's convenient to raise a toilet seat, place my foot on the edge and flip the valve down for about 10 seconds.)

    I'm hoping to to have an artificial sphincter installled soon, but I  have to have strictures (caused by the same urologist who did the GL) under control first.   Worst case, that my involve urethroplasty surgery.

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    • Posted

      Hi Glenn77. It seems your urologist did a major screw up leaving you complete incontinent. I wish you all the best for your ongoing medical track, although i think it’s gonna be a difficult one. Frustrated that it started with what should be a standard operation.

      I use condom catheters mostly on holiday. With a Coloplast active leg bag, that i can hide under my swim shorts. I can swim and be active without running to the toilet. But it doesn’t feel very comfortable. Not the condom nor the leg bag. Removing the condom is very painful, and after a few hours i smell urine. But of course having to use pants and pads in one is not comfortable either.

      I hope you find a better surgeon to restore the damage done to you so you can pick up your active life again.

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    • Posted

      Thank you for replying.  I do have a new surgeon who specializes in AMS 800 artificial sphincter implants.  If I can get the strictures repaired and the urethra stable, then there's hope.

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  • Posted

    Dear Eden 98

    Have you thought about something like the Dribblestop penile clapm? Good for men, and it means you dont have to pad up and have that bulkiness, and nowhere to dispose when visiting male toilets. 

    Also look at doing some pelvic floor exercises, you'll be suprised how effective they can be, and I know the Kegel8 V For Men helps a lot with incontiennec in men, especially after prostate surgery.

    You say you have fibromyalgia Researchers in Korea found that fibromyalgia sufferers were significantly more likely to have symptoms of over-active bladder (frequency or urgency). The study concluded that people with fibromyalgia were 3 times more likely to have OAB (over-active bladder) symptoms, so I am afraid this is connected, but do try your pelvic flor exercises - you'll be amazed.

    I hope this helps


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    • Posted

      Hi Stephanie,

      thank you for your kind response. I had pelvic floor therapy for four month last year but ended it because it did me more harm than good. Fibromyalgia pain got worse and my incontinence didn't get any better. My urologist advised me another therapist who more often worked with male patients. But i'm still not sure if i should start this all over again.

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