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Old 05-17-2009, 10:39 AM   #1
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chad34 HB User
Explaining venous leak to people.

Hey guys,

Like I've said, I've been dealing with a venous leak since about age 13 (22 now). I still haven't told anyone outside of my primary care doctor and the three urologists that I've seen about my (our) condition. Has anyone here come out with an explanation to close friends or family? What were there responses?

I'm debating whether or not to come out with it to my parents. I'd say that between the ages of 15 and 17 were the worst times to deal with this. As an athlete and relatively attractive guy, I was always in positions where girls wanted to get intimate with me. Countless times I found myself making up some lame excuse to ditch the potentially intimate scene. Wow it just sucks having to run away from a girl you truely adore.

I had a really hard time controling my anger and frustration during this time. Instead of explaining what was bothering me, I'd take out my aggravation on my family--yelling at them for no reason, blaming them for anything, etc. Eventually, I began to accept my condition and the relatively extreme outward expression of my frustration subsided. I think telling my parents about my condition would enlighten them as to why I was the way I was...and why I never brought any girls home...

Thoughts? Is it even worth it? Or should I just let it go and focus on the future?

 
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Old 05-17-2009, 09:44 PM   #2
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themagicman11 HB User
Re: Explaining venous leak to people.

Hey man, I'm in the same shoes as you. I'm 19 and I've had venous leak since I was like 16-17. It really sucks but I'm getting the best help I can and by the end of the summer I'll either have an implant or have gone under venous ligation. As far as telling people, the only people I've told are my parents. This has been the smartest thing I've done since all they've done is help me. They've gone as far as to change insurance plans for me and help me set up an appointment with one of the country's best urologists. I haven't told any of my friends though because I do find it really embarrassing. But we both need to remember that erectile dysfunction is a MEDICAL CONDITION and doesn't have anything to do with who we are. And there ARE treatments that we can go through that will make our lives a lot better if we learn to accept them. Keep your hope alive though...

 
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Old 05-18-2009, 09:44 AM   #3
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caddyman23 HB Usercaddyman23 HB User
Re: Explaining venous leak to people.

Hey Chad,

Telling my folks was, without a doubt, one of the hardest things I've ever done (and I was 27!). It was awkward to discuss (couldn't bring myself to say the word "penis" in front of em'...lol - just kept calling it "my member"), and it took a good chunk a' time to explain the surgical options that I was pondering (at hearing that some doc would potentially be shoving plastic and such into my nether-regions, they actually (laughingly) suggested that I first try to better explore sex and dating while impotent!!). But in the end, at hearing how lonely and depressed the impotence had made me, and on hearing how much research and such I was doing into other/all treatments, they ultimately came around...hell, who do you think's driving me to the hospital in a couple weeks?

Now all that said however, my ultimate advice is that the choice depends on you and the relationship you have with your folks. If you're close, and feel that they'd be supportive and understanding (and again, I'm sure they will be), then hell yah - tell em' ASAP! IMHO, the notion of verbalizing troubling issues in one's life (especially one as maddening and life-dominating as ED) can't be minimized. Trust me from experience, once everything's out there and off your chest, you're gonna feel a whole lot better. Moreover, as Magic perfectly said, remember that we're fighting a medical condition; nothing that's happening to you (or "not" happening I suppose) is your doing - it's just a (more than likely) random birth defect - no different than being born with a bad toe or cross-eyed or whatever. Approach it like that - as a clinical, medical issue that can be analyzed and treated - and not as some judgement of you or your potential as a man - and making decisions will get a whole bunch easier.

Last edited by caddyman23; 05-18-2009 at 10:01 AM.

 
Old 05-18-2009, 08:36 PM   #4
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chad34 HB User
Re: Explaining venous leak to people.

Thanks a lot, both of your advice puts everything a little more into perspective.

Magic, how did your venous leak progress? Were you one day suddenly not able to get an erection? Or was it gradual? Are you able to get an erection, but not able to maintain? Was there any precipitant (injury, etc.) that may have caused it?

 
Old 05-18-2009, 10:15 PM   #5
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themagicman11 HB User
Re: Explaining venous leak to people.

Hey chad. i'm actually totally unaware of how I got my venous leak. I didn't have it at all before 11th grade or so of high school... I think that's when I first noticed it but I didn't think anything of it (just thought I had been masturbating too much or that it was normal for erections to go away fast). I didn't really realize it actually until freshman year of college when I actually started hooking up with girls and I had to fight hard to keep my dick erect. I knew at this point that there was some type of problem and sure enough I got tested (took visits to so many doctors, you wouldn't believe how many urologists don't even know what venous leak is) and I had it. I have absolutely no idea of how I got it but I assume that it would be from some type of injury that I got playing sports.

What about yourself?

 
Old 05-19-2009, 01:51 AM   #6
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chad34 HB User
Re: Explaining venous leak to people.

Yeah, pretty similar story. At first I just thought I had been masturbating too much or maybe that erections just went away faster when you got a little older. But then when I was 15 or so and I was making out with a girl and it seemed like things were gona be taken further I noticed that it didn't matter how turned on I was, I just couldn't keep it hard. Think that's when I first started understanding that I had a problem. But I never took any action until summer before my junior year of college. I used to play a lot of baseball and rarely used a cup btwn 12 and 13. I can't think of the exact instance it may've happened...but I do recall two or three times during that period where i was hit there with a ground ball. can't be sure that's what caused it...possible though

I don't know if you've tried the rings or not but on my second uro apointment one of the nurses gave me like four or five of them to mess around with. They work great for me. They were uncomfortable at first but I'm used to them now and barely notice the discomfort. but yeah it really sucks having to to interupt the moment and put the thing on and also always having to worry about how long it's been on. Gota say i have a lot of respect for you doin all you've done at only 19.

 
Old 05-19-2009, 12:14 PM   #7
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themagicman11 HB User
Re: Explaining venous leak to people.

Yeah, I used to do Tae Kwon Do and I never wore the cup either. God I wish I did though, if that's what really caused it. But I think I'll give those rings a look - have you been able to successfully have sex with them without any complaints from the girls? I would just feel awkward having to tell them I need a ring because I can't get it up. Also out of curiosity how severe would you say your venous leak is? With me I've found that it depends on what position I'm in. If I'm lying right on my back or am sitting with my legs spread wide apart, or standing up, then my erections go away almost immediately (and don't really even get past like 10% unless I stimulate it) but when I'm sitting normally I can get pretty decent erections (prob like 85%), though they still will fade away faster than they should. This is what gives me hope because I don't think my leak is caused by a disease so I doubt it'd be as widespread or hard to operate on, but we'll see.

 
Old 05-19-2009, 02:46 PM   #8
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chad34 HB User
Re: Explaining venous leak to people.

Yeah damn that's so similar to me. I get my best erections when i'm sitting down, usually between 85-90 percent but they go away within 5-10 sec without continual stimulation. when i'm standing up or lying down I can get like 70-80 percent erect but they go away even faster than when i'm sitting. But like when i'm sitting, blood fills up and takes it to its full length but it's still kinda soft. It doesn't get typical erection-hard until i put the ring on...don't know if that makes sense.

Yeah and i've been able to have sex with the aid of the rings. I've had sex with the same girl on several occassions but on each one we had been drinking pretty heavily, so i was able to just kinda sneak the ring on then put on the condom and get down to business. I'm also too embarassed to tell a girl about my condition, which would inevitably have had to happen if the girl and i had been sober. It sucks man cause i really want a relationship...but i don't think i have it in me to tell anyone. As far as the sex with the ring went, yeah it was pretty good, the girl seemed to enjoy it. i don't know..it'd prob be worth giving the rings a shot because they work pretty well for me and we seem to have very similar issues. If you decide to test 'em out, you should understand that they are really uncomfortable at first, but you eventually get used to them.

Last edited by chad34; 05-19-2009 at 02:53 PM.

 
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