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Old 10-18-2008, 11:48 PM   #1
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19 and thinking of an implant

Hello guys.

I'm 19 and I've been having trouble with erections for about a year and a half now. I've been diagnosed with a venous leak (how I got it is completely unknown) and my erections have gotten weaker and weaker to the point where not even drugs can make my penis get to more than 50% hardness.

I've pretty much compulsively researched venous leak/erectile dysfunction for the past few months. From what I've read, there is barely any research being done on finding a permanent cure, or even a suitable treatment, for pure severe venous leak. Future medications, even gene therapy, seem to operate via similar mechanisms to viagra/cialis (facilitating blood flow into the penis), which didn't work for me.

As a single 19 year old male, I'm not willing to use a vacuum pump and I've already tried constriction rings with no success. Obviously venous ligation, with it's incredibly low chance of success and it's high complication rate, is not an option and would almost certainly fail because I am quite certain that my venous leak is gradually worsening (it is worse now then when I first noticed it).

I am going on november 10th to my urologist to talk about getting an implant. I am posting here to ask all of you guys what you think about me getting an implant at such a young age. Logically it makes perfect sense to me for the following reasons:

1. The new implants last for 15-20 years. That would mean that mine will last till I am in my late 30's to early 40's. At that age I probably won't care about sex as I do now, and I could just get it replaced anyway (and the technology for implants will be much improved then).
2. I'd much rather have my ED taken care of at this age and through my 20's then to wait for a cure for 15 years. If that even happened, I MIGHT regain natural erections when i'm like 35 but I'll have gone all those years without a functioning penis.
3. Apparently this condition is going through very little research. Nobody even knows what really causes venous leak and I suspect it'll be at least a few more years till they do. And just knowing what causes it would be only the first step, then more years would have to be put into finding a cure, then more years into animal testing, then more years into human testing, then more years into getting FDA approval. All in all, it is not realistic to expect that a cure for my condition will be released before my young adult life is over.

I just want to know what you guys think about this. Also any guys with implants please share your experiences. Since my penis is completely non functioning right now and since the surgery (With a high success rate and almost no chance of serious complications outside of damage to the penis, which isn't working anyway) is, and correct me if i'm wrong, the ONLY way i'd be able to use my penis in the next 20 years or so I just don't see any reason not to do it.

 
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Old 10-19-2008, 10:15 AM   #2
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art662 HB User
Re: 19 and thinking of an implant

Hey Magicman11

There are several on here that have had implants, as I have had.
Also, there are other patients that will post on various prostate cancer boards.
I am probably the old veteran - having my first implant @ 25 in 1981. Iím 54 now and have lived longer with the implant than without.
Everyone will react differently to the implant, so no matter what anyone says, you may or may not have the same outcome. My experiences are to the extreme end of the implant results.. Others will have more positive outcomes. I want to say that I am all for the implant, if it is the last option available.
Iíll paste and quote from your notes.


{1. The new implants last for 15-20 years. That would mean that mine will last till I am in my late 30's to early 40's. At that age I probably won't care about sex as I do now, and I could just get it replaced anyway (and the technology for implants will be much improved then).}

You are correct that the implants have improved a great deal. I assume you are thinking about the three piece inflatable implant. There are some things to consider at your age. How active are you? I was 25 when I was implanted and a pro athlete. The implant is a piece of equipment, and although the ideal life span is 15-20 years, as a young active person you may experience a reduced life span of the implant. I have had 7 so far. The last one in 2002. It will need replacement next year. You will find the first implant usually yields the best results, but if you do need a revision, it becomes much more complicated. There are many more risks with the second implant, such as penile shortening (as it is an issue with the 1st implant) was well as nerve damage and other complications, such as penile wall weakening. Most posters who have just gone through their initial implant will all say they wish they would have done it sooner, but if you are young and will most probably need one or more revisions.

{2. I'd much rather have my ED taken care of at this age and through my 20's then to wait for a cure for 15 years. If that even happened, I MIGHT regain natural erections when i'm like 35 but I'll have gone all those years without a functioning penis}

I have been in many, many hospitals around the country. All my fellow implant patients who were not completely organically impotent had some regrets about not following all possible treatment options before committing to the implant. But of course, they were there because they too were having problems with their implant.


{3. Apparently this condition is going through very little research. Nobody even knows what really causes venous leak and I suspect it'll be at least a few more years till they do. And just knowing what causes it would be only the first step, then more years would have to be put into finding a cure, then more years into animal testing, then more years into human testing, then more years into getting FDA approval. All in all, it is not realistic to expect that a cure for my condition will be released before my young adult life is over.}
Yep, you are right on. There is little advancement over the years because most men are silent on this condition. The reason breast cancer has the funding and support is because there is a voice that presses these issues. I doubt that there will be much support for the research because men wonít speak up. So it will be slow going on this medical topic.


{I just want to know what you guys think about this. Also any guys with implants please share your experiences. Since my penis is completely non functioning right now and since the surgery (With a high success rate and almost no chance of serious complications outside of damage to the penis, which isn't working anyway) is, and correct me if i'm wrong, the ONLY way i'd be able to use my penis in the next 20 years or so I just don't see any reason not to do it.}
If you have exhausted all other options. Some other considerations - how will you pay for this? Years ago almost all insurance companies would allow for ED treatment. As an example in my state - there are now no individual policies available that cover this condition - period. Our State insurance pool for high risk patients also does not cover this. Most group insurance plans also exclude ED treatments. So you must be confident that you can pay for, and maintain coverage, as the typical implant will run anywhere from 30K on up. Revision surgeries tend to cost more, but if you have an AMS product, they will warrant the implant for life, at the cost of the original installation date. For me in 2002, that was 15,500, for the implant alone, so that will reduce costs somewhat. Like I said there are great outcomes with the implantóbut at your age you will most probably need revisions.
Hope this helps and please ask anything of the board - they take the time to help. Also, one other note - if you are like most of us here - you will still be very interested in sex.

 
Old 10-19-2008, 10:36 AM   #3
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Re: 19 and thinking of an implant

Hello art, thanks for the reply. I really appreciate it... it's really good to have people to talk to about this because I sure as hell am not going to talk to my friends about it.

You make sense in your reply. But still, I see no reason not to do it right now solely for the reason that my penis is completely non functional, has no foreseeable hope of recovery in any time in the near future, and does not respond to any treatment that I am willing to try (there is no way I would rather rely on injections and VED for the rest of my life than get an implant) pretty much tells me that the implant is the only logical option now, despite all of the risks. The risks wouldn't really put me much further behind than i am now (completely unable to have sex), and the risk of something happening that completely destroys my penis is very low compared to the benefits I would almost surely get from the implant.

Also our situations are different because you were a professional athlete. I'm not going to lie, I live a pretty sedentary lifestyle. I don't just sit around all day but I don't really do much exercise either. I mostly just go out and hang out with friends, rather than play sports and that type of activity so I suspect my prosthesis will undergo considerably less wear and tear than a professional athlete such as yourself did.

As for costs, I am fortunate enough to come from a wealthy family so paying 30,000 for the implant would be doable. Revision surgeries will be my own worry for the future, but I will be sure to consider that when choosing my own insurance plan and either way, having a sex life isn't something you can really put a price tag on.

You're right, I probably will be very interested in sex at a later age. But my ED won't torment me to the same extent that it does right now. I am young and all my friends talk about nothing but new girls they've picked up. I live in a dorm in college and every night I see guys and girls going back to their rooms to hook up and it kills me because I can't participate in any of that stuff. When I'm 50, I won't have as many constant reminders of ED in my life as I do now.

It seems to me (and correct me if I'm wrong) that I only have three choices here: live with erectile dysfunction all the way through my young life waiting for a cure (if it ever even BEGINS to be researched), go through the remaining 70 or so years of my life sticking a needle into my penis and sticking a vacuum pump and rings around it only to get semi-hard erections, or try this implant thing out. Please correct me if I'm wrong because I am emotional and desperate right now but that is how it appears to me.

Last edited by themagicman11; 10-19-2008 at 10:45 AM.

 
Old 10-19-2008, 12:04 PM   #4
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art662 HB User
Re: 19 and thinking of an implant

Hey Magic -
Don't get me wrong - I know full well what you are going through. I must admit I was having a great time at 25 and hooking up was a way of life. Remember this was pre -AIDS era. So one day being fully sexual and then the next - boom to organic impotence. (after a months stay in the hospital). so I know the feeling all too well - at least at 25. The implant was my only option - period.
Before I had my stroke of bad luck, I had lots of girlfriends - and after the impotence - I had lots of girlfriends. Heck, I only got married for the first time 4 years ago, with lots and lots of serious girlfriends in between. Not one of them left me because of my Ďproblemí.
I suppose my ego was way to big back then to let something like organic impotence stop me from sexual encounters with women. Sounds kind of odd looking back on it now.
I guess it never was as big an issue as it is to some men. I would meet someone new - find them attractive and tell them my story. It was the truth, it was open and perhaps I got sympathy sex - but it was good, but different. I have been the type that really didnít care who knew about my condition. I have a medical problem - simple as that.
I know that is hard to understand when you are your ageóand for many talking about this to anyone is taboo at any age.

Iím all for the implant. But I still would try the alternate methods before I commit to the implant. It is an irreversible decision - there is no new treatment that will restore the tissues that will be destroyed once the implant is placed. Take your time - but donít become a hermit. The sum of you is more than whatís between your legs. Women will like you for you and will be more than willing to accommodate your problem if you allow them the opportunity to get to know you. I suggest you work as hard on allowing yourself to be as open as possible - you have a medical problem shared with millions of other menóperhaps some of your college buddies as well.

 
Old 10-19-2008, 03:05 PM   #5
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Re: 19 and thinking of an implant

Thanks for the reply.

Believe me, if there was any other treatment left for me besides using a VED or sticking a needle into my penis for the next 20 years of my life I'd be the first to sign up but after months of delusional searching I have finally accepted that this miracle treatment does not exist. The implant is irreversible, but equally irreversible will be all those years that will have been ruined by the ED. I truly admire you for being able to tough yours out like you did, but quite honestly I'm not as strong as you are and I also have never had a girlfriend (so I don't exactly have girlfriends falling at my feet ready to accomodate me). Either way, I'm going to talk to my urologist, who is among the top five in the nation according to my last urologist. Thanks again for the reply.

 
Old 10-19-2008, 03:44 PM   #6
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Re: 19 and thinking of an implant

Hey Magic,

Gotta weigh in...more so than most that (at least post) here, I can relate exactly to what you're thinking and going through. Do a search by my username for the whole story of me, but in a nutshell, I'm 28 and been diagnosed with the same venous leakage as you. I've been to three urologists, researched implants till my eyes hurt, tried (and failed) the shots - even scheduled myself for ligation surgery till more detailed study of my ultrasounds revealed my leakage is so severe and so deep within me, that the odds of any success (via the operation) are like nill.

So like you, I'm totally impotent...always have been and without "something" to fix me, always will be. Also like you, I pretty well came to the conclusion that the odds of science finding a total cure for venous leakage are pretty dismal. The numbers of guys in their 20's that experience ED from leakage are (guesstimated anyway) at fewer than one in ten...hardly numbers worth devoting billions to in search of a cure. lol - life can suck huh?

As I said, I pondered hard and heavy getting an implant (read back through my bazillion posts from months back). I spoke to a few men that had them put in, even called the major manufacturers of the things to try and get "the real story" about their durability and "useability." While initially, it seemed like the way to go - "hard and functional in seconds, and for as long as you want" - the more I read, and the more I spoke with people, the less promising an option it seems, at least while we're young.

First hit against the implant (and from what you said, this may be different than you) is that I'm very physical. I'm an amateur bodybuilder/personal trainer, and so in the gym more than a few hours a day. While the implants are durable - Art has said he continued to play raquetball at a professional level for years after his surgeries - intense stress from activity certainly increases the risks for movement, failure or whatever...and anytime something goes wrong down there, back under the knife ya go. Now the notion that I might not be able to do sets of heavy squats with an implant in me isn't in and of itself enough to not go with surgery, rather it's the notion that I wouldn't any longer be able to do those simple physical things that a young guy takes for granted. With an implant, you can possibly say good-bye to sleeping on your stomach, running and jumping into pools, camping on the dirt in a sleeping bag, or in fact a hundred other things a 20-something does without thinking, and conversely, a slower moving 50-something just doesn't do! So while the bodybuilding specifically may not be your thing, give serious thought to what your daily life would be like with an implant...for me the possible loss of my "youth" 20 years early, has helped me decide against surgery.

Second, the thing really isn't designed for sex the way younger guys would (or perhaps wanna) do it. Per the manufacturers I spoke to, pulling on your thing, engaging in oral "anything," or in fact trying any sex rougher than simple, traditional missionary is gonna result in possible "loss of implant life" to "outright failure and neccesary surgery." While perhaps some sex is better than no sex...I dunno dude, Art, others, correct me if I'm wrong here, but the rougher you are with the thing - as a younger guy is inevitably gonna be as he's both healthier and still learning about sex and sexuality - the greater the odds of problems and more surgeries. So not only does it seem that one has to live like a 60 year old when they have an implant, but they have to do it like a 60 year old with an implant. Seems to me a cure almost worse than the disease!

Finally, I've read about some advancements in the foreseeable future that make waiting (even for me at 28 years old and already probably missed my best sexual years) a viable idea. Those shots - which trust me, I hate as much as you - are eventually going to be replaced by other delivery methods. In fact, some company (name escapes me at the moment) tried to patent through the FDA, a gel version of the same meds earlier this year, only to be rejected for some testing error thing. The idea of rubbing and not shooting the meds into Little Me, sounds like something I could get used to. At any rate, the company fully plans to try the patent request again soon, and I'm hopeful (desperate?) they'll succeed. While yah, our venous leakge means we'll never be able to get it up 100%, I'd rather have 50, 70 or 90% via the gel/ring, and not have to worry about surgery, revisions or plastic tubing sitting across my pelvis and running to my now surgically-shrunk member.

I dunno...I wrote all that up there, not to sway ya from your choice - believe me, nine years older than you and battling exactly what you're going through, lemme tell ya, it's not going to get easier with time. I went all the way through college, and then grad school watching my friends meet women, hook-up and/or date, and all of it seemingly without any worry that their members were going to respond when needed. Impotence has made my life overall, pretty lonely and often times, quite sad. So I totally understand your want to find a permanent fix, and to find it "now."

My thought though, and again even without another nine more years of "no sex" than you, is to wait, keep on with the shots, pills n' rings, and instead (as Art said) try to find a partner that understands, and cares about you as you, and not just as an ever-ready penis with legs. Now, straight-up, you're gonna have to totally redefine what sex is (something I'm really, really having a hard time with btw). Venous leakage means you and I don't get to have drunken "wham bam, thank you ma'ams," and while that's not fair and it's not right, there's worse things in life. For guys like us then, the challenge to is to find a true partner, one that doesn't judge us for our singular limitation.

Either way dude, just want ya to know you're not alone. There are guys under 30 that are going through this stuff, and the fact you've had the kahones to go to the doctors, try to find a cure, and moreover to post here, says a lot. You ever need someone to share research with, or just need some encouragement from someone as equally messed up (just playin'), I'm here.

 
Old 10-19-2008, 06:01 PM   #7
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themagicman11 HB User
Re: 19 and thinking of an implant

Quote:
Originally Posted by caddyman23 View Post
Gotta weigh in...more so than most that (at least post) here, I can relate exactly to what you're thinking and going through. Do a search by my username for the whole story of me, but in a nutshell, I'm 28 and been diagnosed with the same venous leakage as you. I've been to three urologists, researched implants till my eyes hurt, tried (and failed) the shots - even scheduled myself for ligation surgery till more detailed study of my ultrasounds revealed my leakage is so severe and so deep within me, that the odds of any success (via the operation) are like nill.
Hey bud... As stalkerish as this may sound, I actually already know your story. As you may be able to relate to, I've spent countless hours at my computer obsessively studying venous leak and I've run across a few of your posts. Thanks for understanding my condition. I give you respect for taking action to deal with yours.


Quote:
So like you, I'm totally impotent...always have been and without "something" to fix me, always will be. Also like you, I pretty well came to the conclusion that the odds of science finding a total cure for venous leakage are pretty dismal. The numbers of guys in their 20's that experience ED from leakage are (guesstimated anyway) at fewer than one in ten...hardly numbers worth devoting billions to in search of a cure. lol - life can suck huh?
Exactly... and one in ten is an overstatement. I doubt even one in a hundred men suffers from unexplainable venous leak. Probably closer to one in a thousand.

Quote:
First hit against the implant (and from what you said, this may be different than you) is that I'm very physical. I'm an amateur bodybuilder/personal trainer, and so in the gym more than a few hours a day. While the implants are durable - Art has said he continued to play raquetball at a professional level for years after his surgeries - intense stress from activity certainly increases the risks for movement, failure or whatever...and anytime something goes wrong down there, back under the knife ya go. Now the notion that I might not be able to do sets of heavy squats with an implant in me isn't in and of itself enough to not go with surgery, rather it's the notion that I wouldn't any longer be able to do those simple physical things that a young guy takes for granted. With an implant, you can possibly say good-bye to sleeping on your stomach, running and jumping into pools, camping on the dirt in a sleeping bag, or in fact a hundred other things a 20-something does without thinking, and conversely, a slower moving 50-something just doesn't do! So while the bodybuilding specifically may not be your thing, give serious thought to what your daily life would be like with an implant...for me the possible loss of my "youth" 20 years early, has helped me decide against surgery.
I think that saying the implant will result in the loss of your youth is a bit much... although there certainly will be limitations on the activities you can do, I've read that you can still jog, lift weights, etc without much trouble. That's the extent of my physical exertion anyway... My hobbies are non-athletic and I probably play sports or participate in rigorous physical activities no more than once every two weeks. I can't think of anything I'd be doing on 9/10 days that would cause considerable wear to the implant. I'm a pretty sedentary guy. Either way I could definitely get used to sleeping on my back (hell, I already do) if sleeping on your stomach was really a problem.

Quote:
Second, the thing really isn't designed for sex the way younger guys would (or perhaps wanna) do it. Per the manufacturers I spoke to, pulling on your thing, engaging in oral "anything," or in fact trying any sex rougher than simple, traditional missionary is gonna result in possible "loss of implant life" to "outright failure and neccesary surgery." While perhaps some sex is better than no sex...I dunno dude, Art, others, correct me if I'm wrong here, but the rougher you are with the thing - as a younger guy is inevitably gonna be as he's both healthier and still learning about sex and sexuality - the greater the odds of problems and more surgeries. So not only does it seem that one has to live like a 60 year old when they have an implant, but they have to do it like a 60 year old with an implant. Seems to me a cure almost worse than the disease!
Interesting... I'm going to have to do some more research on this. I really doubt that oral sex/masturbation is more harmful than straight missionary but I'll consider what you said and double check. I've read posts by people with the implant engaging in oral sex and being "studs" in bed and just having sex multiple times a day. If you can shower/bathe with the implant and have sex with the implant, then why not be able to receive oral with it? It's probably just something that the manufacturers say as protocol. Either way, it's not as if using the half erection I'd have from all the shots and pills wouldn't be more limiting than having the prosthesis, and it would probably be a lot more expensive if I did it for the next 70 or so years of life.

Quote:
Finally, I've read about some advancements in the foreseeable future that make waiting (even for me at 28 years old and already probably missed my best sexual years) a viable idea. Those shots - which trust me, I hate as much as you - are eventually going to be replaced by other delivery methods. In fact, some company (name escapes me at the moment) tried to patent through the FDA, a gel version of the same meds earlier this year, only to be rejected for some testing error thing. The idea of rubbing and not shooting the meds into Little Me, sounds like something I could get used to. At any rate, the company fully plans to try the patent request again soon, and I'm hopeful (desperate?) they'll succeed. While yah, our venous leakge means we'll never be able to get it up 100%, I'd rather have 50, 70 or 90% via the gel/ring, and not have to worry about surgery, revisions or plastic tubing sitting across my pelvis and running to my now surgically-shrunk member.
The thing about shots/meds and this new gel, is that if they work anything like the injections then they won't address the problem of venous leak and will just have more blood flow to the penis, which will just flow right back out. That's why the treatments haven't been effective for me.

Quote:
I dunno...I wrote all that up there, not to sway ya from your choice - believe me, nine years older than you and battling exactly what you're going through, lemme tell ya, it's not going to get easier with time. I went all the way through college, and then grad school watching my friends meet women, hook-up and/or date, and all of it seemingly without any worry that their members were going to respond when needed. Impotence has made my life overall, pretty lonely and often times, quite sad. So I totally understand your want to find a permanent fix, and to find it "now."
I know what you mean man, and believe me I feel your pain as well. Living in dorms and having friends who all happen to be ladies men can be torture for a guy with ED. Although I usually manage to stay positive and happy, there's that constant shadow over my life... I'm sure you know exactly what I mean. I'm lucky enough to have a lot of very good friends and parents who care deeply for me so I wouldn't go as far as to say this is making me lonely, but it is making me feel like I'm missing out on a crucial part of life. And hell yes, I want this fixed now.

Quote:
My thought though, and again even without another nine more years of "no sex" than you, is to wait, keep on with the shots, pills n' rings, and instead (as Art said) try to find a partner that understands, and cares about you as you, and not just as an ever-ready penis with legs. Now, straight-up, you're gonna have to totally redefine what sex is (something I'm really, really having a hard time with btw). Venous leakage means you and I don't get to have drunken "wham bam, thank you ma'ams," and while that's not fair and it's not right, there's worse things in life. For guys like us then, the challenge to is to find a true partner, one that doesn't judge us for our singular limitation.
Thanks for your thoughts man. I'm definitely going to consider that option and discuss it with my urologist. And believe me I'd kill to find someone like that but I am so ashamed of my disorder that I am unwilling and too damn scared even to try to start a sexual relationship with a woman.

Quote:
Either way dude, just want ya to know you're not alone. There are guys under 30 that are going through this stuff, and the fact you've had the kahones to go to the doctors, try to find a cure, and moreover to post here, says a lot. You ever need someone to share research with, or just need some encouragement from someone as equally messed up (just playin'), I'm here.
( removed )

There is actually one more thing I am going to try before considering the implant. I am going to try a 20 mg dose of cialis. This worked for me when I took it last year but the multiple times I tried it over the past few months, it didn't work. This may be because my condition worsened but it may also be because when it worked I was using pills from the pharmacy and the ones I've tried after that have all been imported from India. But I doubt it will work because my ED is worse now than it was back then (I never even have periods where it works now) and because the 15g dose of the legitimate cialis had no effect.

Last edited by Mod-S4; 10-21-2008 at 06:52 PM. Reason: please do not ask members to post against the rules/terminology

 
Old 10-20-2008, 06:34 AM   #8
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art662 HB User
Re: 19 and thinking of an implant

Hey Magic & Caddyman

Good to see you BTW Caddyman.
Magic, I wish you all the best. One other note to consider. You seem a little secretive about your condition -as most men are, so nothing unusual about that. But have you considered how you will interact with your sex partners? You will have to tell them your story - no way around it. The penile implant does the job, but it is definitely not a natural body function. 1st time out of the gate - your secret will be out. So, just something to think about. You have to prepare your mind as well as your body. Itís different for us old married guys. But if you plan to play the field, plan to tell your story & get comfortable with the thought that people will know of your condition.

 
Old 10-20-2008, 07:01 AM   #9
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Re: 19 and thinking of an implant

Art -

I definitely agree with that. If I get an implant there's no way in hell I'll hide that. I won't be able to and honestly I find the idea of having an implant a lot less embarassing than being totally impotent. Either way, I'm going to find some way to not let this ruin my life, and if this means doing what you did and telling girls upfront, then so be it. I won't let this ruin me, I have too many blessings in this life. Actual penetrative sex probably takes up 1% of somebody's life and there are way too many other things to enjoy to let this make me depressed. There are people out there who can't even go outside and play, or go with their buddies to the bar for a drink, or go to a party so I really have nothing to complain about because as a rich college student with loving parents and friends I'm luckier than 90% of the rest of the world.

Don't get me wrong though I still want the implant.

Art - one question for you. Did you find that what caddyman said about the type of sex you can have with the implant is true? You really can't masturbate with it or receive oral? I find that hard to believe and I've read reports of people saying that the implant was great for oral sex. What are your thoughts on this?

As far as the complications of surgery go... I think it'd be unlikely that I'd have to worry about serious complications until later surgeries and honestly I can live with the idea of having a functioning prosthesis and not have to worry about complications till I'm like 40.

I'd also really like to hear how you managed to have a successful dating life even with ED. I feel like girls my age would judge me for it but I guess those aren't the types of parnters I should be dealing with anyway. I really just want to have a happy life and it seems like you were able to achieve that despite your ED. I admire you for that and I hope to do the same. I feel that with me , living with the condition will become easier over time because I've found that I'm getting less and less interested in random hookups and more interested in committed, loving relationships.

This is a challenge in my life but that's it. I'm either going to overcome it (by getting the implant or other treatment) or I'm going to learn to live with it. When I'm on my deathbed I'm going to look back and be happy about how I was able to deal with this challenge and still lead a great life.

Last edited by themagicman11; 10-20-2008 at 07:17 AM.

 
Old 10-20-2008, 08:28 AM   #10
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Re: 19 and thinking of an implant

That's pretty insightful for someone your age. I don't know - but at 19, I think I was way behind in the maturity curve.
Caddyman sums up a lot of the frustrations and issues you young guys face. It was the same for me. The things you said about your condition is very true, as to the big picture of health, it is minor (although it doesnít feel that way). I post a lot on several boards. Itís something I have to do to try and make sense of all the issues I have faced. Most are prostate cancer boards. These guys are not only facing impotence and incontinence, but many are fighting for their lives. So it puts some things in life in perspective.

{Art - one question for you. Did you find that what caddyman said about the type of sex you can have with the implant is true? You really can't masturbate with it or receive oral? I find that hard to believe and I've read reports of people saying that the implant was great for oral sex. What are your thoughts on this?}
Well, you have to preface this with the fact that I have had 7 implants total. So perhaps I have been a little too hard on the little fellow. I have always had a very active sex life. But from my experiences the implant settled in and really I could do anything I did before. The implant failure was loss of fluid, which has happened 3 times in 27 years. The 1st was because the surgeon nicked a tube. So, really I have had only 2 implant failures due to mechanical issues. Only one was due to sexual activities. It was an issue of trying to get too big a pipe in too small hole. So a cylinder was dislodged. All other implants were replaced due to scarring or penile shorteningówhich is a common problem. Nerve damage is also a problem, as multiple surgeries will make your sensitivity evaporate.
But you should be able to enjoy any type of sex, and it never bothered me to sleep on my stomach. The surgeons never concluded my implant failures were due to activities. (outside of the one instance).

{I'd also really like to hear how you managed to have a successful dating life even with ED. I feel like girls my age would judge me for it but I guess those aren't the types of parnters I should be dealing with anyway. I really just want to have a happy life and it seems like you were able to achieve that despite your ED. I admire you for that and I hope to do the same. I feel that with me , living with the condition will become easier over time because I've found that I'm getting less and less interested in random hookups and more interested in committed, loving relationships.}
Well, one thing that will differentiate you from your peers is honesty. You will have to be honest with your potential mate, with or without your implant. After my reaction to coumadin, which caused my impotence I was totally non-functional down there for 2 years. 25 to 27 years old. So I just told them the story - it was just the facts. I was not ashamed of it, it just is what it is. I donít recall any outright rejection. Perhaps some budding relationship didnít happen because of my condition - but if that is all there was to the possible relationship, then I am glad that it turned out that way. I think people are attracted to confidence, honesty and what you have to offer as a person.

We're all here to help.

 
Old 10-20-2008, 08:38 AM   #11
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caddyman23 HB Usercaddyman23 HB User
Re: 19 and thinking of an implant

Good Mornin' All,

Art - foremost, good to see you too, and thanks as always for your posts. Like Magic, and after the sad prognosis from my various uros, I spent months online trying to find somebody, anybody that could share their experiences with ED at a younger age. Your life-story and advice have been utterly invaluable in helping me make decisions, and as I pretty-well wrap-up the diagnosis and non-surgical stages of my awful journey (btw, on a side-note to you, Magic and others...I saw an endocrinologist (hormone specialist) a couple of weeks back, had the full blood-work taken; should be getting the results back this week. While messin' with my hormones won't do a dam thing to fix a physical leak, there may be something there...I'll keep y'all updated when I hear back). So again, my sincere thanks Art for taking the time to counsel younger guys like us about your experiences - you're doing us a service more than you could ever know.

And Magic - thanks again to you for posting your thoughts and experiences. While of course, I wouldn't wish this congenital nightmare on any guy, I do envy that you're aware and dealing with the problem at such a young age. I knew something was wrong with me in HS and college, but at first just suffered quietly (thinking it was perhaps pyschological in nature). I kept busy studying, lifting (and of course drinking/partying), etc...It was only at like 26, done with school, working full-time and for the first time really, out there and alone, that I saw doctors and started to do something. And by that age, with my friends mostly in serious relationships (a few even married), and me, never having dated anybody, it was/has been freakin' hard to get back to a mindset and lifestyle of meeting, dating and enjoying people as more than just platonic friends. Moral of that rambling story? Find a solution that works for you, and go with it a lot sooner than later...as you said, the sexual experiences and social growth you miss by not being out there doing something with somebody are far more hurtful and embarassing than the ED itself.

That all said, your attitude and drive seem strong, and in my own life, as I've struggled to find a solution, I've found both to be key. Whether your answer is an implant or some other treatment, I know you (we'll) beat this, one way or the other.

K then, pep talk aside, I have a question for ya. You've said your ED (via the leak) has gotten "worse" in the past year. Does that mean at one point you had normal function, and then suddenly it began to fade? See for me, there never was any function ever (at least not that I can remember). Leak's seemingly always been there as I've grown up, and so I just I'd just concluded it's simply a birth defect (the endo equated it with being born with vericose veins in your legs). The fact yours has developed over time is something I've never heard.

 
Old 10-20-2008, 12:42 PM   #12
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Re: 19 and thinking of an implant

Thanks a lot for the insight, Art. I'm a little worried about multiple implants but honestly I just want to be able to experience my 20's like I deserve to, and I really doubt I'll need a replacement at least in my early 20's if I treat it right. As technology improves over the next 15-20 (hopefully years) before I need my first replacement, complication rates will decrease for sure.

It's also really good to hear that it won't limit sex. I don't know what I'd do if I could never receive oral sex again... lol.

Caddyman, to answer your question-
Yes, mine is a weird case. I had a perfectly normally functioning penis all the way until around the middle of senior year in high school. That's when I noticed something was a little funny but for the most part outside of a few situations I was able to get erections pretty regularly. It finally developed into a serious problem freshman year of high school and the preceding summer... that's when I got to the point where I didn't think I'd even be able to have sex with a girl. But the thing is, even then I would have periods of one to two weeks where my penis would spontaneously return completely to normal function (whereas the day before one of these periods it'd be completely non functioning). This would happen like once every two months but ever since summer it hasn't happened even once and my erections have been weaker than ever. Rather than staying hard and leaking very very slowly, like it used to, it only gets to half hardness and then just leaks out instantly now. It is for this reason and also that my condition is so unheard of that a cure for this will likely be a century or more away (since noone with this particular condition apparently has ever even been heard of) that makes me feel that implant surgery is the ONLY viable option for me.

 
Old 10-20-2008, 04:49 PM   #13
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caddyman23 HB Usercaddyman23 HB User
Re: 19 and thinking of an implant

Yes, mine is a weird case. I had a perfectly normally functioning penis all the way until around the middle of senior year in high school. That's when I noticed something was a little funny but for the most part outside of a few situations I was able to get erections pretty regularly. It finally developed into a serious problem freshman year of high school and the preceding summer... that's when I got to the point where I didn't think I'd even be able to have sex with a girl. But the thing is, even then I would have periods of one to two weeks where my penis would spontaneously return completely to normal function (whereas the day before one of these periods it'd be completely non functioning). This would happen like once every two months but ever since summer it hasn't happened even once and my erections have been weaker than ever. Rather than staying hard and leaking very very slowly, like it used to, it only gets to half hardness and then just leaks out instantly now. It is for this reason and also that my condition is so unheard of that a cure for this will likely be a century or more away (since noone with this particular condition apparently has ever even been heard of) that makes me feel that implant surgery is the ONLY viable option for me.

Huh, that is different. I only asked ya because it would seem that if your leakage came about during or after adolescence, and so after you already had developed a functioning member/system, there might be something you can do about it. Again, in my case, I've never been able to get it up; seems to suggest I was born this way. Perhaps yours isn't a purely congenital form of venous leakage, rather the result of some stimulus, reaction or alteration in chemistry that caused things to go out of whack? When you talk to your uro next month, perhaps see what his thoughts are as to your hormone levels, activities over the past few years (at least since you started noticing the failures), etc. That said, I'm sure if you've already tried the usual pills, seen Urologists, and been diagnosed with leakage, this might be old news to ya, but per chance you haven't...?

lol - at any rate dude, you're starting to convince me (again) that an implant is my destiny too (much as I've tried to avoid the idea these past couple months, and after doin' the same feverish research as you). I'm still gonna give the shots n' such another go around (and after finishing up all the testing/prognoses from the endo) - see if I can stab, pop and collar my way into a fulfilling sex life I suppose. But I agree with ya totally; the odds of science understanding what seems to be a random birth defect for me, and a mutation (?) for you, are years and years off - to say nothing of finding a permanent cure. While I'm still scared out of my ever-lovin' mind about what life will be like with plastic, tubing and fluid forever wedged between my legs, doesn't seem there's much choice if I want to have a "total" sex life. I think I know this deep-down somewhere, it's just gonna take a bit more time to get myself there mentally.

At any rate, keep us posted if you don't mind...and as I said; ya need someone to bounce thoughts off of, or whatever, just lemme know.

Last edited by caddyman23; 10-20-2008 at 05:10 PM.

 
Old 10-20-2008, 08:15 PM   #14
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Re: 19 and thinking of an implant

Quote:
Originally Posted by caddyman23 View Post
Huh, that is different. I only asked ya because it would seem that if your leakage came about during or after adolescence, and so after you already had developed a functioning member/system, there might be something you can do about it. Again, in my case, I've never been able to get it up; seems to suggest I was born this way. Perhaps yours isn't a purely congenital form of venous leakage, rather the result of some stimulus, reaction or alteration in chemistry that caused things to go out of whack? When you talk to your uro next month, perhaps see what his thoughts are as to your hormone levels, activities over the past few years (at least since you started noticing the failures), etc. That said, I'm sure if you've already tried the usual pills, seen Urologists, and been diagnosed with leakage, this might be old news to ya, but per chance you haven't...?
The last urologist I saw, who was recommended to me by another one, is the only one I've seen who SPECIALIZES in ED and knows all the cutting edge, new stuff. He told me first to try the pills at a stronger dose because I told him smaller doses were giving me only minimal effects. But I didn't detail my complete history of ED to him so next time I will make sure I do that. If it really is what you said and is just some chemical imbalance that could be fixed I think I would drop to the floor and cry in happiness for hours. I'll see what's up next time I see him though.

Quote:
lol - at any rate dude, you're starting to convince me (again) that an implant is my destiny too (much as I've tried to avoid the idea these past couple months, and after doin' the same feverish research as you). I'm still gonna give the shots n' such another go around (and after finishing up all the testing/prognoses from the endo) - see if I can stab, pop and collar my way into a fulfilling sex life I suppose. But I agree with ya totally; the odds of science understanding what seems to be a random birth defect for me, and a mutation (?) for you, are years and years off - to say nothing of finding a permanent cure. While I'm still scared out of my ever-lovin' mind about what life will be like with plastic, tubing and fluid forever wedged between my legs, doesn't seem there's much choice if I want to have a "total" sex life. I think I know this deep-down somewhere, it's just gonna take a bit more time to get myself there mentally.
Honestly dude it's pretty clear that you have exhausted all other options. I think you should get it right away but I guess it makes sense that you want to prepare yourself mentally. Just don't wait too long because these years truly do fly by. To think I'm already halfway through college... it feels like just yesterday that I moved into my dorm for the first time. As for your concern about having the implant betwen your legs for life... people say you don't even notice the implant in your body, like you would be completely unable to tell that it's in your body without touching it, even if you tried your hardest.I really doubt this will prevent you from doing the things you want to do. Maybe you won't get to go water skiing or participate in a mixed martial arts fight but as far as camping, sleeping on your stomach, running, and lifting weights, you should be just fine and I've never heard of people having the prosthesis interfere much with regular activities like these. Worst case scenario, the implant doesn't suit you and you're back where you started (but no further behind since a cure won't be discovered any time soon enough to be acceptable to us by any means). But honestly the risk of this is so small (especially since we're young and otherwise healthy) and the benefits so high that it just doesn't make any logical sense NOT to do it.

I'll definitely keep you guys posted. My appointment is nov. 10th and first thing I will do when I get back is post here. I have a feeling that we will be helping each other out for a good portion of our lives. Let me know how your own situation goes too.

Last edited by themagicman11; 10-20-2008 at 09:44 PM.

 
Old 10-21-2008, 08:03 AM   #15
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Re: 19 and thinking of an implant

Quick update on my situation. I suddenly remembered reading about a venous flow controller named actis (a constriction ring). No doubt you have already heard of this. Now I'm not going to delude myself, I'm still going to need an implant eventually. But as for right now, when I'm on cialis I can get a pretty solid erection. The only problem being that it goes away quickly. I've tried another brand of constriction ring before but due to poor design it failed. Also I wasn't on cialis 20 mg when I tried it. Actis is the only brand I know that has actually been tested and has respect in the medical community so if actis + 20 mg cialis can give me a decent enough erection to have sex, then I'll hold out on the implant and wait for the technology to improve and for my problem to worsen. I'm not expecting a miracle with this constriction band thing but it's worth a shot.

Last edited by Mod-S4; 10-21-2008 at 06:47 PM. Reason: Terminology.

 
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