Male dribbling or incontinence--urine leakage /47xxy

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I have had this problem for over 40 years. I have had about 5 cystoscopies done through my penis. Very painful experience with 4 of them. One reason is that I have a false entry into my bladder, so my urine stays in two different places in my bladder so I cannot complete drain my bladder, even for the urologist appointments when he does an ultrasound of my bladder. Because of this I leak urine constantly. Not a lot but during the day or at night. WWhen I wore whit underwater I always had urine stains so I now wear non white underwear. I have had bph, but that did not stop the leakage.My doctors never discovered why I was leaking. I also had a urethra stricture.,but still the cause was never found. The other problem is that I have only a 2 centimeter sex organ so most of the urine is sometimes slow to come out. BUT I also have the chromosome disorder 47 chromosomes or xxy. So some of us have a shorter sex organs, besides having smaller than normal testes because they are atrophied.

I often use padding so my underwear does not have any urine stains, or a wad of toilet tissue in my underwear. Even though I wear colored briefs. I just don't want it to show out of my trousers because sometimes a leak alot. I was on drugs oxybutynin but I don't take them anymore due to my haemodialysis treatments because they can cause kidney problems. I dont need any anothet kiddney disorder.I was on them for about 25 years. BUT I had a kidney disease for 33 years,FSGS.

I have not gone to the doctor for this problem for about 20 years. I just live with it everyday. Hopefully,if you have this problem

a cure maybe found in the near future.

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  • Posted

    John, I admire your courage!
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    • Posted

      I use this forum because I haven't seen anything on this website that mentioned male leakage. There are plenty of women who have this problem, but nothing on men. I thought I should start a conversation about my problem of leaking or incontinence which I have had for over 20 to 30 years and beyond. I am 65 years old so nothing bothers me to discuss my medical problems Most of my medical problems are listed on xxy , am I unique. But I forgot to list my leakage problem because

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    • Posted

      because It is part of my life now. I could care less what other people think of me. It may help others to think they aren't the only ones who have this same leakage problems. Having 2 centimeters to pee out of, is no longer an embarrassment. But at least,when I have sex it grows up to less than 10 centimeters.

      Having 47 chromosomes is the reason why I don't measure up to most normal men with 46 chromosomes.

      Courage is not in me. But thanks for your comment.

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    • Posted

      Hi there John,

      I am sure you are just 'the tip of the iceberg'. Incontinence is so taboo for women and they are just starting to talk about. Howver, for men, this is a whole nw dawn. With the increase in prostate problems/procedures more and more men are suffering. As yours is a birth condition you have had many years experience and your post on this forum is an inspiration for many men, I would ask you to keep posting, to keep relating your experiences, because where you are now, many other men are just starting on this journey and are desperate for help, but society's taboos are just so entrenched.

      More power to your pen John (keyboard!!)

      S

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    • Posted

      John,, do you believe the dribbling is because of klienfelters syndrom,,,,, I would so like to talk further with you on the subject . Because I have almost same type of problem,,, I am new to this group,,, and may be late at responding,,, I am just beginning to use this app .

       

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    • Posted

      I don't know if it is. The expert on xxy symptoms is the xxyguy on a different forum for Klinefelters Syndrome. XXYGUY believes that it is not genetic. He believes that a person becomes xxy during puberty.

      I believe it is genetic and you are born with it. Or it is a pre-existing disorder.

      I have had this problem sincey 20's. I don't remember having a dribbling.problem when I was a young person. But after I had a cystoscopy, a doctor told me that I have a false entry into my bladder so urine pools in two different areas in my bladder. When I pee, my bladder doesn't fully empy., so I thinks that why I leak. Sometimes a lot and sometimes only a little. In my 20's I could not hold it very long. So I needed to find a bathroom, I was always looking for a nearby where ever I went.

      I don't know if it has to do with my short penis

      at 10 cm when erect or 5 cm when not erect. Also after I pee, the urine tends to drip down my penis and onto my scrotum., so that my scrotum is wet.I usually use tissue to dry my penis and scrotum when sitting on the toilet.

      I have tried standing up but with my artificial leg that sometimes becomes difficult because I have wet the front of my trousers. It is easier to pee standing up during the summer and wearing short pants because I can pull up my pants leg and pee in that position.

      Previously I have stated that I sometimes use padding or several.layers of tissue in my underwear. Sometimes changing it throughout the day because I never know when I will.leak. for example, I didn't put any padding in my underwear last night but when I woke up today, my underwear was slightly wet.

      Like I said I had, this problem since my 20's and I am now 65. XXY's have other problems but I have never heard dribbling is a problem

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    • Posted

      Having to worry about where a bathroom is, and if I am going to get a sudden strong urge to pee,,,,,, really effects the quailty of our lives . I also have,, hereditary spastic paraplegia,,, so I am disabled,, pernamently . I do not work,, and I am 53 years old,,, oh my life has changed since turning 50 . I have had an awful urge to pee,,, for several years,,,, t seems when I start to walk,, it gets wicked bad . I am taking Oxybutynin ER 15mg,,, and IDK if it works or not . But beyond that,,, I started taking, using, or started testosterone about ???  in my 30s . Just after inding out it was my fault,, we couldnt make babies ... I am using androgel, 1.62% pump,, 4 pumps daily . I have been off for a couple years cause I had a blood clot,,,,   but thats a norm for xxy, ers . I believe I may of gone thru puberty later than most boys,,,,  IDK,,,  cause I can remember having what I thought was normal, size balls and scrotum, and a healthy normal size penis,,,,    but after puberty,,, it all shrunk . I could go on all day,,, your turn,, thanks for responding ....

       

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    • Posted

      Besides having post void dribbling which I told you I have this problem since my 20's. It is uncontrolled. I never know when I will leak. Just today, as I was walking in downtown Denver, I leaked a bit. Not a lot. But I always have some padding just in case in my underwear. I am 65 years old.

      Besides being xxy, I get testosterone injections every 3 weeks because my insurance won't pay for testosterone gel because it is too expensive. Plus I have 2 hereditary (genetic)kidney disorders, one is a nephrology disorder called minimal change and the other is called focal segmental glomerosclerosis. Since I went through stage 4 chronic kidney disease, I now to a haemodialysis center to have my blood cleaned 3 times per week at 4 hours each day. Due to having diabetes type 2, I am also an amputee. Due to diabetes and haemodialysis, I lost circulation in my feet. I had a below the knee amputation on my left leg and all my toes removed on my right foot.I retired from my government job in January 3, 2014. Started on haemodialysis on February 21, 2014, lost part of my left leg on May 22 and.lost the other part of my leg on June 16th. My big toe on October 28th and the rest of my toes on November 16. I am considered to be disabled or handicapped now. Because I am an amputee and because I have end stage renal disease-ESRD.

      So dripping urine, is the least of my problems now. I leak at night now but I was unaware for a long time mainly because I slept with nothing on or in the nude. But I have been wearing underwear to bed,and my underwear it sometimes wet in the morning. Plus it is hard to get an erection. Testosterone doesn't help but I have learned that haemodialysis lowers my testosterone levels, because before I went on haemodialysis, I could get a erection, but now it is watery.

      So you see, at age 65 and all the problems I have, and continue to have, I don't get depressed because at least I am alive because I am on haemodialysis.

      Prior to being on it, m

      I actually sweated water in my legs, I thought I was gaining weight, but I was actually gaining water weight. Since I started haemodialsis in February 2014 by July 2014, I lost. 40 liters of water or 88 pounds of water. I weighed 200 pounds in January and by July, I weighed 118 pounds. I looked like a skeleton

      So haemodialysis saved my life and it continues to save my life.

      Since I was unaware that I was a xxy male, I developed no friends in my childhood years or in my adult years, I didn't know how to make friends, mainly because I knew I was different. At first when I was young, I thought I should have been a girl instead of a boy because I was in love with boys my age and pretended to be a girl, but then at the library at age 9, I discovered the word homosexual. That is when I decided that must be what I am.Today, I am a male but sometimes that feminine feeling come out but I don't act out those feelings.

      Leaking urine may have the reason why I never wanted a relationship because I thought I was the only person who had that problem at my age, even at 20 years of age. I always knew women had that problem but I never heard any male person having that problem until I discovered. this forum.

      I am willing to share all the problems I have had so people will think if they only have a leaking problem that is not as bad as having all the ones I have.

      Also since I have a circulation problem, I cannot get a kidney transplant or be on any.list for a transplant.

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    • Posted

      I also forgot to mention I wear 2 prosthetic limbs. The one on my left leg is a pin attached to a silicon sheath whi h goes into a prosthetic leg. It clicks into the artificial leg. My right foot sets in a mold that is fit into the shoe so I have balance. No toes means no bfoot balance. I can't wear them all day. If I do my stump hurts on my left leg and the bottom of my right foot hurts too.

      At home, I use a wheelchair to get around and only walk to the bathroom, when I need to go. But at night, I have a portable urinal that I keep under my bed in case my bladder needs to be emptied during the night. I empty it in the morning and clean it out so it doesn't smell.

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    • Posted

      Yes,,,,,,,,,,,, Wowwwww     leaking a little is nothing compared 2 everrryyyythinggg else  . Thank you for sharing .

      I have days I feel so different than everyone else,, though I dont have it that bad,,,   SO  SORRY, 4 ALL YOUR ISSUES ..... 

      I was diagnosed when contraception,, if thats the worrd?? , didnt work,, so we both went and got checked out,, I was dx,, as 47xxy mosaic,, besides that I have central sleep apnea, spinal stenosis, left bundle branch block with my heart, HSP which is a crippling of the legs,, and no cure,, I get wicked cramp in my left foot,, that takes me down,, besides my legs give out accasionally,, with no warning . With KS,, I feel exactly the same way as a biography I read online from a guy from UK support group . Shy when young,, did not try to get friends,, felt out of place,,, dont really have any now,, Life would be better,, if I did,, but its ??? .. I had walking prblems when young,, and I was weaker than most boys my age,,, I think I had delayed puberty,, if KS is suppose to happen after puberty ?? . Cause I can remember having almost normal size balls and penis,, when I was a teen,,, IDK, i AM 53 NOW .....  

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  • Posted

    Hi John

    I wonder if you have ever tried a penile clamp? Dribblestop and Uriclak are the two the most popular ones and they will add the right compression (and both adjustable) to stop the leaks. The acticuf absorbent pouch is also popular, but some men find it difficult to keep it in place.

    You are right to try and stop the leaks they are uncomfortable and unpleasant and really restrict your lifestyle choices I do hope this helps 

    S

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    • Posted

      Never heard of anthing about stopping my leakage. I have always had it, so it is part of my life now. I have used padding in the past but I sweat alot and my underwear gets wet. so thats why I use padded up toilet paper.I will look up those items.Thanks for the information
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  • Posted

    Let.s hope.....
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    • Posted

      When I first asked a doctor about my leaking, he assumed I had BPH (Benign Prostatic Hyperplasia).I had the cystoscopy and put on drugs for my leaking urine, but eventually was told it was not my prostate that was causing my leaking

      Eventually I was given oxybutynin. This drug didn't stop my leaking altogether. I leaked less. But every person is different, so I don't know if this drug will help.

      Now that I am haemodialysis, I cannot take the drug because it impairs my kidney function, so my leakage continues. But since I drink less water now, I don't leak as much.

      I drink more or less 4 cups of water(US measurements ) a day.

      This includes all liquids including any fruits that have water, like melons, or milk, frozen pops, or any other liquids that contain fruit juices, including soda. The more I drink or eat these items the more I leak.

      Most people don't realize that any thing that becomes liquid can cause leakage.

      I hope any of this information helps you.

      Before haemodialysis, I never knew any of this information about liquids.

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