After some excellent advice and shared experience with another poster here, I thought I'd expand the conversation (and add that snazzy title up there).
About me...I'm pretty unique where the "average" ED sufferer is concerned; hell, I may be the freakin' unicorn of ED victims. I'm only 28, and for me, "it's" never worked. I have congenital venous leakage - meaning that I was born with veins at the base of my member that leak out blood almost as rapidly as it goes in. With the most powerful of injected drugs, I can get it up to 40 - 50% and then for only a few minutes at most. I'm otherwise healthy as could be - in fact as a personal trainer by trade, and avid (amateur of course) bodybuilder, I'd wager I'm a lot healthier than most. But as one could imagine, where "sex" is concerned, impotence has meant my adolescent and young-adult life have pretty well sucked, and that's putting it mildly.
After finishing grad school, getting settled and finally making enough money (and paying for adequete insurance), I began trying to find a fix for my problem. Three urologists (all of which I'm told are among the best of the best) and a handful of sex therapists/psychiatrists later, and I've been told the following:
- There is no fix for my issue...only risky, embarassing and/or life-altering devices and surgeries - all with equally risky, embarassing and/or life-altering side-effects.
- The closest to a permanent solution is of course an implant of one sort or another...an option surgeons have been loath to push because of my age, and because there's a slim, slim chance that some advancement sometime in the hazy future might be able to fix me naturally - a chance of course destroyed with fitment of the robo-d*ck.
So...with 30 creeping up (and me getting lonelier and more depressed every month), and with no immediate prospects for a natural fix, I'm (slowly, reluctantly) pondering the "atom bomb implant solution," with a thought of essentially "put it in and just deal with whatever comes, because life's too dam short."
I throw all that out there, because I'd like - need - to hear from someone, ANYone that's been or is, in a similar place...impotent at a young age and trying to figure out what to do about it.
Or, even better; someone around my age that already had an implant put in, and could speak about how it's changed their life. Are you able to do the things - run, jump, throw weights around, even sleep on your side - that you used to do before the operation? How's the sex? I mean, getting it up and putting it in is the crux of it all - but there's more to the game than that...have you been able to do all the things in bed (and TO you in bed) that a 20-something wants/should be doing?
Share your stories or your concerns...I know there HAS to be someone out there in the same place, and not 45 - 80 years old. Lets help each other out with the information we have.
Last edited by caddyman23; 08-02-2008 at 11:04 PM.
hi caddy...i consider myself in the same boat as you...am 36 years old and battling impotence since the age 18. yes...i had normal puberty and rock hard erections during the those years...but at age 18, the hardness of the erections faded...and now 36 near about gone. at 18 i had all the tests, but back then the norm was...if you have a penis problem...it is of psychogenic in origin - they would then write a script for yohimbine and send you on your way. this went on for years and finally in 1997 or 1998 viagra was found and this stuff worked wonders for me then, but now, nothing works. my diagnoses now after many ultrasound tests is venous leak...i have great inflow of blood, but quicker outflow, which makes for terrible erections.
i too am a bodybulder and have religiously trained at least 4 days weekly since the age of 16, and this continues today. i too am in great shape, and along with the weights, am an avid runner as well and my diet is far near perfect with the few splurges now and then we all bodybuilders need to keep our sanity! so...what i am trying to say is that no one by looking at me would ever, ever think i was impotent...except for maybe the fact i never have a girlfriend. currently i use shots for erections which work sometimes...it is a hit or miss factor...and i have started taking them quite regular just to get blood in there. i currently use often a augusta medical penis pump for regular exercises to keep blood in there as well and to get regular stretch of the penis just in case i resort to the prothesis i will keep as much length as i can. so i guess we are somewhat twins...i just have a few years more of this under my belt than you...and i too am waiting for that magical gene therapy to cure this...but it is basicly in its infancy stages and seeing if its safe for human consumption is where they currently are.
Thanks for writing. I want ya know you got my total respect...While I've "always" been impotent, this nightmare has really only been poisoning my life for perhaps 3 - 4 years now...if you've been dealing with this since you were 18, I dunno dude - you're tougher than me to be sure.
Forgot if I wrote in my ramblings, that I all was scheduled to undergo vascular ligation surgery on the 23rd, only to cancel a couple weeks ago. The freakin' doctor, after telling me during the initial visit there was as good as a 70% chance of restoration of function with the procedure, told me - after "I" called again mind you - that in fact he couldn't give me an odds of success; that he'd just have to do his best during the 2 - 3 hour (!) procedure; we'd then wait 2 - 3 months (!!) and see (with assistance from pumps and pills) if my probably inch-shorter member decides to come to life. He said in fact, with the location/extent of my leakage, that I was a better candidate for an implant, but because of my relatively young age and because the implant's irreversible, I should try all other options. Problem is, beyond the usual, ineffective pills n' pumps, vascular surgery is the ONLY other option.
My sad, sad story aside, because it seems there are no other lasting options for guys with venous leak, and beacuse (as you said) gene therapy - if it works - would have me "cured" at your age, and you at 45 - I'm about ready to say screw it, gimme the robo-dick. I can't imagine going even another year - much less into my late 30's - with a non-functioning member.
What'ya think? How've you been able to cope until 36? I mean, up to now, I haven't been able to do anything with women...******, I was out at the bars in San Diego just this weekend; met this gorgeous girl - wanted me BAD - but, as usual, I had to break it off, because I knew where it was gonna end...with me making excuses and slinking off, wanting to shoot myself from the frustration and embarrasment.
What're your thoughts about the implant? As I said, the frustration (to say nothing of loneliness) is driving me nuts at almost 30 years old, but the thought of giving up or having to at least severley curtail my lifting (plus of course shrinkage, scarring, future surgeries), gives me pause. lol - least you've presumably been big through your 20s - 30s...I only got the bodybuilding bug a handful of years ago. Not sure if I'm ready to give it all up yet.
I'm scheduling an appointment with my first urologist - and probably the dude who'd put the thing in if I go for it - to talk "all things implant." Ask some detailed questions about what life would be like as "robo-d*ck." Stay tuned.
Last edited by caddyman23; 08-04-2008 at 09:43 AM.
hey caddy...i have discussed the venous ligation surgery with my doctor and he is willing to do it, but like you know, it has it's drawbacks like penile shortening (and regarding a penile implant, since you have not, I assume, had your prostate removed, in the hands of a great surgeon, the most length you will lose with a prothesis is 1/2 inch). my doctor does not recommend that have the vascular surgery, but will if i want it. it is very expensive as well and considered as investigational so many insurances will not cover it. my dr told me he has done hundreds of these vascular surgeries, especially in the 1980's - they were very popular back then, however the long term success rate is not great, thus not a popular surgery for impotence at all. the dr has also showed me the implant and i suggested to counteract the length loss to cut the ligment attached to the pubic bone for that 1/2 inch back - he discourages this as well but stated he would do it if i want it - it too has drawbacks. this dr i see has placed thousands of implants and he told me that once implanted they are hard as a brick when pumped up, so i assume any type of sex could be performed. according to my dr., these new implants last 15-20 years or longer, and if this makes you feel any better, when/if they have to replace it, they will have to place approximately 1/2 inch longer cylinders to replace the ist implant - these implants actually stretch you longer through the years - they actually do this for severe peyronies patients with severe scarring that has left their penis severely shortened - the doctor will place the first implant with the longest cylinder possible and after healing, have the patient activate the pump very often for aperiod of 6 months, and this actually stretches the penis out 1/2 inch or longer, and they then reoperate and place longer cylinders - so as the dr was telling me, in this day and time, when you have a prothesis replaced, they will place larger cylinders.
caddy...also, i spoke with my doctor about physical activity with an implant - you can do any exercises in the gym you want, including squats, presses, ab work - the reservoir is placed behind the stomach muscles - it is well protected - he encourages to ride jetskis, bikes, skydiving - anything! this procedure will not limit your lifestyle. professional wrestlers have these things implanted and still wrestle for a living!
I thought I’d post a thought, although I’m past the ‘young guys’ age - I was implanted at 27.
As I responded to Caddy in our “New To Board” thread - I have a great deal of experience with implants at a ‘young guy’ age. And let me say at the start I am all for the implant, as imperfect as it is - if that is your only option.
As to activity your doctor encouraged - it’s pretty true that you can be very active - but you will have a pump in your scrotum and tubes that run across the pelvic bone, as well as cylinders with hard end caps, close to the head of your penis. So I wouldn’t go so far as saying any activity would be encouraged - there are limits. Trust me, when you have a hard piece of plastic between your testicles - you’ll learn to self limit yourself on some activities. Yikes!
As to length gain by inserting longer implants. It depends on a variety of conditions. Some can’t be oversized because of in implant actually ‘buckling’ within the cavity. What Will01 is saying about implanting the largest cylinders, stretching and then re-implanting a larger cylinder is true. All is good if you have a smooth congruent pocket to encase the implant. Two things can go wrong in a young patient. 1. The implant will push forward due to the pumping for several hours daily. This can cause an ‘erosion’ having the implant actually start to migrate through the skin. 2. The muscle wall of the penis can weaken (as in my case) this makes the type of implant problematic, which may call for additional reconstructive surgery. You’re going to have an implant for a very long time.
As a guy who has been there - it is a different for an implant patient who is young - (as you two are & I was) than the average implant patient who is pushing 60. My last implant was done in 2002 - and now it is on to implant #8 - 6 years later due to fluid loss. I have the AMS 700 and like the 3 piece implant because it looks more natural in the flaccid state, not perfect, but close.
Being young - there is a good chance you will need a revision - perhaps the brand new 2008 implant will last 15-20 years - but there is no study on longevity that I am aware of - and it really isn’t relevant, as every patient will respond differently to surgery and implantation. I would certainly screw up the statistics on implant longevity.
Saying all this, it is the only option today for patients with organic impotence. I will do it again - but years of experience has taught me to temper my expectations. All the best and good luck.
Thanks again Art...your responses are so eloquent and thorough - me thinks you should be working for the makers of these things as a counselor!
'Preciate your response as well Will...while the idea of giving up heavy leg work - hell, ANY type of lifting - from possible surgery makes me (or my ego I suppose) twitch, I'm (slowly) beginning to realize that having bird legs is a small price to pay for a proper sex life (lol - and I'm sure half the room just slapped their heads and yelled "duh!!" at that statement). However even me as a layman, and obviously scared as ****** at the whole idea; I wouldn't think upper body trainning would be impacted.
At any rate - and because this has become something of an obsession for me now - some online research last night had me stumble across a study that had men with relatively low "plasma" testosterone levels and diagnosed venous leak, injected with additional testosterone (into their members directly I believe)...The shots brought the men to the upper range of "normal" for testosterone levels and, in combo with Viagra-similar drugs, the result was a marked decrease in the leakage - in fact a return to normal function for the majority of men (coupled with expected benefits in libido and strength). It should be noted that the men were boosted only to the upper range of normal for all men, and with careful monitoring of PSA levels against any prostate issues. The thought is that testosterone plays a vital role in forming the various parts of the male reproductive system (duh), and that boosting test levels for deficient men can improve or correct failures/deformities such as leaky veins.
My testosterone levels were of course tested, and came back in the range of normal - though I recall Uro No. 1 stating that one type or level was a might low (?)...if a "cure" or at least marked improvement in venous leakage is only an andro-boost away, and without having to become robo-dick...sign me up!
Has anyone heard anything from their doctors or personal research in this area? Again, for me, the goal is to exhaust EVERY option before signing up for "Operation Get-it-Up" no sooner than January 09' (and after a six month bodybuilding blitz to start next week before the lights go out on my leg trainning). I'm even trying to find a way if possible to sign up as a guinea pig for any clinical trials. Rather than implant a device in me, I'll happily test experimental therapies "now" and if the "approved" treatments are 10 - 15 years off!
Last edited by caddyman23; 08-05-2008 at 09:56 AM.
Huh...good find Art, thanks! The article doesn't go into detail as to what varieties of ED the gene therapy could fix...while I'm unfortunately becoming more and more of an amateur urologist as I go through all this, wouldn't repair of "smooth muscle areas," etc. correct a wholly different sort of failure than venous leakage? If I recall, my tissue/muscles are healthy down there, but again the veins leak here, there and everywhere.
At any rate, as the study results were published now nearly two years ago, I'll contact that university (and the company created to pursue the stuff commercially) and follow-up as to where the work has since headed. Hopefully I'll have some news to report.
Well here's the latest on yours truly. All of the shots have now failed. Ditto for a second go-around on Levitra and Cialis (tried Viagra last year, saw blue dots and became dizzy; no good).
That means I have now tried all "traditional" treatments (shots and pills), explored vascular ligation surgery (and been deemed not a candidate...or at least not at all a good one) and the ever-popular implant (an option that, after extensive research, I'm not willing to subject myself to while still in my healthy 20's).
The only option remaining then, is one I stumbled across in online research, and brought up with my uro yesterday. I read about a study where men with relatively low counts and diagnosed venous leakage were given testosterone - and thereby brought up to the upper range of "normal" - and saw dramatic reduction in their leakage, and even a return to, or creation of spontaenous erections.
Within a normal male testosterone range of 220-ish to 1300-ish, my number is 500...normal, but sortta "low normal" I'm told by my uro.
At any rate, the doctor was open to trying this "treatment," (for lack of any other options I suppose), and with the caveat that, if it works, and boosting me results in normal function, my ability to ever have children might be destroyed (the body stops making test. when it detects excess production such as would occur with supplementation) as I permanently boost myself. He has prescribed 50mg of Clomid (to start), taken once daily, with monitoring to see how much or quickly my testosterone levels rise and of course to see what, if anything, happens.
I haven't started taking the pills yet. As with all of these urological "treatments," there are potentially awful side-effects. Messing with one's hormone levels (whether they're where they should be or not) is risky. I'm essentially taking steroids without the fun benefits (Clomid isn't anabolic, and so I won't get to enjoy the 30 pounds of muscle gain that would accompany possible male breasts, acne, mood swings, etc).
I dunno...what'yall think? Has anyone tried this course of treatment before? As with everything here of course, I'm the unicorn of the board. Hormone replacement is somewhat common, but for men in their 50s + when natural test. production slows. To boost the numbers of a 28 year old in the hopes of creating spontaneous erectile function...I dunno. Am I potentially starting a dangerous, stupid or just plain pointless treatment regime?
Last edited by Mod-S4; 09-03-2008 at 09:54 AM.
Reason: Vulgar language is not allowed. Neither is trying to disguise it.
Hi young guy, reading your posts make me confusing, can you tell me that:
(1) Do u have normal sex desire(libido problem)? Do you get erection when watching porns, or even achieve ejaculations, (one question I shouldn't ask: do you love watching porns?)
(2) you get morning erections, is that right?; then your urologist tell you that your morning erection is weak due to "venous leakage"? How serious is the ED issues affecting you? I mean that will you feel depressing all the days?
My sexual desire is currently quite normal - I'd wager I think about, desire sex and companionship as much as any guy my age - which is to say, almost constantly! When I was younger however - my teenage years through my early 20's - my drive for sexual relationships (my libido) while present, was oddly weak. I thought about sex certainly, but (if their conversations, magazine collections, etc. were any indications) not nearly as much as my friends. This leads me to think there may be a hormone component to my impotence. More about that below.
So far as I can remember, I've never been able to achieve a "full" erection (that rigid enough to acheive intercourse). The best I've ever been able to do is perhaps 50 percent for a handful of seconds, and only then with direct stimulation. I've never gotten it up "hands free" - not watching porn, while engaging in intimate situations - never. I DO wake most every morning with an erection (as is normal) but again, only at 40 - 50 percent, and the erection fails totally, less than a minute after waking up - again owing to the diagnosed venous leakage.
I'm able to ejaculate as normally, long, often and in as reasonable an amount of time as any other 28 year old (thank goodness for that - I probably would have exploded by now if I couldn't!). Thankfully the two processes (erection and ejaculation) are independent functions of the reproductive system.
How serious then is my problem? Without mincing any words - being impotent has utterly poisoned my life. I've never had a loving, sexual relationship with anybody. I don't date for fear of my ailment being discovered. I'm one of the loneliest people you'll ever meet, and often feel quite sad and hopeless. Yet I try to remain optimistic. As I've said, I've explored (or will explore) every medical treatment available in the U.S., and I remain engaged as to latest advancements to come. In fact I have an appointment this Friday with an endocrinologist to proceed with hormone/blood tests to see what, if any issues may be there (hopefully answer the question as to whether my lack of libido at a younger age was due to some hormone deficiency). Next week I'll meet again with my regular urologist to try and choose the "best" (erection inducing) shots of those I've already tried (again, I've technically "failed" them all - but some mixtures worked a bit better than others...in combination with Ciallis and a ring, it's better than nothing).
My sex life is certainly empty, depressing and sad - and in some ways then, so is the totality of my life. But I'm commited to not letting this congenital disability define and totally limit my existence. I WILL find satisfying sex and love lives...it's the single greatest challenge of my life, and one that I'm determined to conquer.
Last edited by caddyman23; 10-01-2008 at 09:55 PM.
Hang in there - and you know at 25 I was in your shoes - for me, one day normal and next month totally impotent. For 2 years I was completely 'limp', but you know, I had a great sex life. I kept dating and meeting new women. I was still competing in racquetball tournaments - and life (love & otherwise) was good. I had many, many encounters in those two years. I think you would be surprised that if you do go out and meet some nice lady - if you connect with her and tell her about your condition, I think you might be pleasantly surprised with the outcome. There are many ways to make love to a woman. Sure, something is missing, (and you are working to overcome your condition) but some of the best sex I ever had was contained in those two years. If you concentrate on what you have to offer, and not on what you lack, you will certainly have much more success.
Just a note of encouragement.
Hang in there Caddyman