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Old 08-14-2008, 09:31 AM   #1
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caddyman23 HB Usercaddyman23 HB User
Venous Leakage - Any Success at Treatment?

Good Morning All,

I've posted several times here before, mostly with questions concerning implants and how they've affected recipients' lives; and I've been fortunate to recieve excellent feedback from individuals kind enough to share their life-stories.

This time however (and as I continue my daily research), I thought I'd try and solicit advice or experiences from those who've struggled with venous leakage - the sad reason I'll likely need to undergo implant surgery sooner than later.

First though, a brief bit of background on me (once more)...I'm 28 years old, otherwise extremely healthy; no history of trauma, drugs, smoking, etc. So far as I can remember, I've never been able to "get it up," but I only sought explanation and treatment in my early 20's. The full battery of tests have shown a primary venous leakage in roughly three places, and all extensive or severe enough that even the most powerful of drugs (whether popped or shot) give me perhaps 50% and only for a handful of minutes. Long story short; I was seemingly born and remain completely impotent.

I've been to three urologists, all considered the best of the best. One initially and enthusiastically offered venous ligation surgery, only to admit later (and when pressed by me) that the operation would ultimately be exploratory, quite possibly unsuccessful (and certainly would become so over the longer term as the bands loosened) and further, would result in certain, really undesirable side effects (e.g. shortening, internal bleeding, etc).

I have an appointment this coming Tuesday with my "primary" uro, who plans to load me up with a grab-bag of samples of everything from MUSE to shots to Cialis and others...and with a plan to have me try everything in combination with everything else. The hope is that I'll be able to "limp" (sad pun intended) along for a handful of months before (or if) I go under the knife for implant surgery around Jan 09.' I've tried most of these before (though not MUSE and none in combo with others), and as I alluded - failed all.

Being so young and so physically active (personal trainer, amateur bodybuilder), the thought of an implant (despite supportive and certainly appreciated statements from others here) and its impact on my health scares the ****** out of me. I continue to desperately search for any alternative treatment, or perhaps upcoming cure; and so wondered if anybody could speak to their own, similar experiences with this most insidious and maddening of ED problems. Specifically:

- Has anybody found that using the usual drugs (viagra, shots, etc.) over time somehow "heals" or has corrected their leakage? I've read about testosterone treatments and such that seem to speak to this possibility...does just massively increasing blood-flow through potent drugs accomplish the same thing for some men?

- Has anybody heard of new or different drugs that are targeted at fixing venous leakage? What about surgery? Anybody undergone ligation procedures and have advice as to its merit (or lackthereof)?

- Finally; what advice could anybody that's younger, single and had to use shots and such to get it up, give to a guy like me when trying to date and pursue sexual relationships. The majority (seemingly all in fact) of the men here are already married, and while I symapthize with both they and their wives, they don't have to date again. The possibility that I'd go through the rest of my life (again, I'm only 28) having to stab, shoot, pill-pop and then collar myself just to have 50% "sex"...it makes me think that without the implant option I'm gonna die an even lonelier man than I already am.

Thanks for reading all that guys - as always, any advice given is absolutely and sincerely appreciated.

Last edited by caddyman23; 08-14-2008 at 09:33 AM.

 
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Old 08-15-2008, 12:39 PM   #2
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Dave56789 HB User
Re: Venous Leakage - Any Success at Treatment?

Sorry I cannot answer your questions, but was wondering if you have erections during the night. If so, your problem might not be as severe as you think.

 
Old 08-15-2008, 04:31 PM   #3
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caddyman23 HB Usercaddyman23 HB User
Re: Venous Leakage - Any Success at Treatment?

I do...but only at about 50 percent. As part of the "full battery of tests" I undertook last year, I was plugged (or tied I suppose) into the nocturnal one (the name of which escapes me). The results showed that I acheived the normal 4 or 5 erections as I slept, but that the leak was so severe, the erections never got passed, again, about 50 percent each time.

Incidently that "test-erections-while-you-sleep" was the final one I undertook, and per the two urologists that studied the results, confirmed (in addition to ultrasounds, x-rays and others) that mine is a primary, congential (born) venous leak - an issue I've since discovered affects fewer than 1 in every 10 men in their 20's. Lucky me.

Last edited by caddyman23; 08-15-2008 at 04:50 PM.

 
Old 08-20-2008, 07:28 AM   #4
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Re: Venous Leakage - Any Success at Treatment?

I recently read on one of the penis enhancement sites that certain exercises such as Jelqing could help close up leakage

 
Old 08-23-2008, 10:28 AM   #5
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Re: Venous Leakage - Any Success at Treatment?

Caddyman:

Just wondering if anything is new since you had your doctor's appointment referenced in your original post. Also, and this is a little off subject, but how did you get your doctor do the "battery of tests"? Did you go to a clinic that specializes in ED? I've been to 2 doctors, and all they want to do is give me a prescription for viagra, cialis, and/or levitra. The only test either of them did was to test my testosterone, which is normal. I have good insurance and would like to have more tests done. I'm 46 and don't think that is too old to have these tests done.

 
Old 08-24-2008, 06:09 AM   #6
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JinL HB UserJinL HB User
Re: Venous Leakage - Any Success at Treatment?

T was "normal"?
Was it in the upper 1/4 of the range? That is "normal" for your age.

Was the estradiol E2 in the lower 1/4 of its range? That is "normal" for your age.

If the hormones are really "normal" you might try Tri-Mix #5 as a penis injection. It is painless & it works as a last resort before surgery. A 2/10cc injection is usually the dosage.

 
Old 08-24-2008, 02:41 PM   #7
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caddyman23 HB Usercaddyman23 HB User
Re: Venous Leakage - Any Success at Treatment?

Quote:
Originally Posted by Dave56789 View Post
Caddyman:

Just wondering if anything is new since you had your doctor's appointment referenced in your original post. Also, and this is a little off subject, but how did you get your doctor do the "battery of tests"? Did you go to a clinic that specializes in ED? I've been to 2 doctors, and all they want to do is give me a prescription for viagra, cialis, and/or levitra. The only test either of them did was to test my testosterone, which is normal. I have good insurance and would like to have more tests done. I'm 46 and don't think that is too old to have these tests done.
Hey Dave,

Nothing new or super interesting to report, beyond the personal decision I'll detail below. I went back to my primary urologist to discuss the findings of the "second-opinion" urologist I saw in July (the one offering ligation surgery), and what options I should/could pursue going forward.

First though, the decision. After countless hours worth of online research (my favorites list looks like I'm studying for a doctorate), conversations here, with implant manufacturers, the aforementioned three urologists, two sex therapists and even a physchiatrist, I've decided not to get an implant...at least not anytime soon.

Heretofore, I've operated under the assumption that there must be (and I would accept no less than) a full-blown "cure" to my ailment. What I've sadly come to realize, is that (at the moment) there is no cure for congenital venous leakage, and in fact all the options for management of the problem, utterly suck. Even the implant, with its promise of full restoration of function, carries certain complications as shortening, tissue destruction, repeated surgeries and of course, the guarantee you'll be dependent on a mechanical device for sex for the rest of your life. While I entirely understand it's a viable option for men in their 50's and up, perhaps already married, and eager/desperate to have any function in their remaining years; for an otherwise extremely-healthy 20-something, that cure it would seem, is worse than the disease.

I've decided then, to "man-up," accept that I am in fact "disabled," and make the best of things. Sex is gonna have to be a lot less spontaneous and a little more work for me than the norm, but ******, I'm having none now - whatever I do is gonna be an improvement, right?

To that end, I met with the uro to find the right shot "cocktail" to use in combo with cialisviagralevitra...a mix that, with a ring, will hopefully get me up enough to enjoy a modicum of "natural" sex, and in anticipation that one-day, science will cure the problem itself, not simply manage its symptoms.

As to the tests I underwent...I'd first ask where you sought help. My first attempt at treatment was through the Boston Medical Clinic - a heavily advertised, and over-glorified Viagra dispensary. It wasn't until I got to a major university med center that a urologist gave me "every" test. My best advice then, would be to avoid smaller, or more commercial ("quick fix") practice urologists (at least for the tests themselves; I have no experience with whether smaller practice uros offer superior/worse treatment than their big university counterparts) - but they'll at least have access to better equipment and materials.

As to the tests themselves, I've forgotten all the names (each is like eight syllables long), but (in a nut-shell), they're intended to measure blood-flow into your member, the amount of pressure (blood, but for the test itself injected saline solution) your veins and such will hold before outflow or leakage (if there is in fact leakage), x-rays and ultrasounds to map out where any leakage is occuring, a home test to see if you're obtaining normal erections during REM sleep, and a couple others.

lol - that doesn't help you much, I know...perhaps others here could attach names to the descriptions. But with the right choice in doctor, and a fuller description of your symptoms, the uro should know what tests need to be done to diagnose your ailment.

As for me, I'll keep checking in from time to time - let y'all know how my own choice of treatment is working out.

Best wishes to us all.

Last edited by caddyman23; 08-24-2008 at 02:45 PM.

 
Old 01-26-2009, 09:11 PM   #8
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caddyman23 HB Usercaddyman23 HB User
Re: Venous Leakage - Any Success at Treatment?

Hey ptown,

I do have nightly erections, yes...but according to the NPT test, they're never at more than 20 - 40 percent - and of course owing to the venous leak. I do wake with a semblence of an erection "some" mornings, but again, they're never more than 20 - 40 percent, and totally fail before I get to the toilet a few yards away.

I've had a full hormone work-up and analysis...all my levels are in the range of "normal." I've tried every shot and pill treatment there is...the leak's simply too deep and too severe; I'm completely impotent.

When I posted that message below, I hadn't yet exhausted all treatments and therapies. In the months that followed, I attempted the remaining (strongest) shot cocktails, and even an attempt to boost my natural testosterone production. Everything failed, and my wildly risky attempt at playing with my hormone levels showed me (finally) how desperate I'd become for a "cure." As much as I appreciate your advice, at almost 30 years of age, I'm no longer willing to try unorthodox, unapproved or untested methods. No medicinal treatments remain available, and so I've elected to undergo implant surgery in April.

 
Old 01-27-2009, 06:05 PM   #9
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ptowncp84 HB User
Re: Venous Leakage - Any Success at Treatment?

Hey Caddy
Have you ever got your stress hormones tested like adrenaline, dopamine, tested. If your adrenaline is to high that can cause a venous leak.

 
Old 06-22-2009, 10:17 AM   #10
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venomx HB User
Re: Venous Leakage - Any Success at Treatment?

Caddyman

im getting the same symptoms

I get a hard in the morning, then it just goes away within a few seconds.
If im masturbating its a little hard, then if i stop stimulation it just goes down to a semi erection

its def not psychological, and im very healthy so i cant have caused it with bad health.

Did you get your treatment??

by the way im 16, so some of us are worse off than you.

also how can i be sure i have a venous leak, as i dont want to tell my parents so i have to see a doctor as telling them is too embaressing at my age,

Last edited by venomx; 06-22-2009 at 11:07 AM.

 
Old 06-22-2009, 12:17 PM   #11
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Re: Venous Leakage - Any Success at Treatment?

Hey Venom,

Yup...my venous leakage is (unfortunately) severe enough that no other treatment options have worked (after several years of trying btw), and so I had an implant put in just about a month ago.

I know it's not what ya wanna hear, but the only means of fully diagnosing a venous leak, is to see a urologist and have ultrasounds, x-rays and other diagnostic/visualization tests conducted. To the best of my knowledge, other than the symptoms themselves (e.g. weak or no erections), there aren't any "physical" signs (like a bruise or pain or something) that can absolutely point to anyone having venous leakage.

That all said, ya gotta remember that at 16 years old, you're absolutely still growing and developing (both your hormones and "down there")...in fact you're gonna be until you're somewhere in your early 20's. In other words, being so young, there could be any of a bazillion other reasons as to why you're experiencing what you are - and those reasons could be pyschological, physical or both. The only way to find out for sure is to be checked out by a urologist or other medical professional.

The best advice I could give you then, is 1) don't panic - there's every possibility that what you're experiencing could totally sort itself out over time, or otherwise be addressed pretty simply by a doctor, and; 2) ya gotta get some professional advice. If you don't feel comfortable starting that process by talking to your parents (which is totally valid btw - I didn't tell my folks about my issue till I was 28, so I totally understand your feelings, believe me!), then try another relative or a nurse at school (if there is one), or your family doctor.

Last edited by caddyman23; 06-22-2009 at 12:19 PM.

 
Old 06-22-2009, 01:57 PM   #12
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Re: Venous Leakage - Any Success at Treatment?

Hmm well some things i discovered, if i stand up - my erection literally just disappears... and near the end of masturbating my penis goes much harder until the climax.

Also, if i stop masturbating for a few days it gets slightly better. But i stopped for one month recently and it didn't make loads of difference.

Can venous leaks be genetic do you know? And also it is very hard for me to see a doctor without informing my parents as the doctor is quite some distance away.

Last edited by venomx; 06-22-2009 at 01:59 PM.

 
Old 08-04-2009, 08:13 AM   #13
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rob12345 HB User
Re: Venous Leakage - Any Success at Treatment?

Hi. I'm in Boston with the same problem and had also been to BMC with no success. Could you let me know what the "major university med center" was that you went to?
Thanks!


QUOTE=caddyman23;3702041]Hey Dave,

Nothing new or super interesting to report, beyond the personal decision I'll detail below. I went back to my primary urologist to discuss the findings of the "second-opinion" urologist I saw in July (the one offering ligation surgery), and what options I should/could pursue going forward.

First though, the decision. After countless hours worth of online research (my favorites list looks like I'm studying for a doctorate), conversations here, with implant manufacturers, the aforementioned three urologists, two sex therapists and even a physchiatrist, I've decided not to get an implant...at least not anytime soon.

Heretofore, I've operated under the assumption that there must be (and I would accept no less than) a full-blown "cure" to my ailment. What I've sadly come to realize, is that (at the moment) there is no cure for congenital venous leakage, and in fact all the options for management of the problem, utterly suck. Even the implant, with its promise of full restoration of function, carries certain complications as shortening, tissue destruction, repeated surgeries and of course, the guarantee you'll be dependent on a mechanical device for sex for the rest of your life. While I entirely understand it's a viable option for men in their 50's and up, perhaps already married, and eager/desperate to have any function in their remaining years; for an otherwise extremely-healthy 20-something, that cure it would seem, is worse than the disease.

I've decided then, to "man-up," accept that I am in fact "disabled," and make the best of things. Sex is gonna have to be a lot less spontaneous and a little more work for me than the norm, but ******, I'm having none now - whatever I do is gonna be an improvement, right?

To that end, I met with the uro to find the right shot "cocktail" to use in combo with cialisviagralevitra...a mix that, with a ring, will hopefully get me up enough to enjoy a modicum of "natural" sex, and in anticipation that one-day, science will cure the problem itself, not simply manage its symptoms.

As to the tests I underwent...I'd first ask where you sought help. My first attempt at treatment was through the Boston Medical Clinic - a heavily advertised, and over-glorified Viagra dispensary. It wasn't until I got to a major university med center that a urologist gave me "every" test. My best advice then, would be to avoid smaller, or more commercial ("quick fix") practice urologists (at least for the tests themselves; I have no experience with whether smaller practice uros offer superior/worse treatment than their big university counterparts) - but they'll at least have access to better equipment and materials.

As to the tests themselves, I've forgotten all the names (each is like eight syllables long), but (in a nut-shell), they're intended to measure blood-flow into your member, the amount of pressure (blood, but for the test itself injected saline solution) your veins and such will hold before outflow or leakage (if there is in fact leakage), x-rays and ultrasounds to map out where any leakage is occuring, a home test to see if you're obtaining normal erections during REM sleep, and a couple others.

lol - that doesn't help you much, I know...perhaps others here could attach names to the descriptions. But with the right choice in doctor, and a fuller description of your symptoms, the uro should know what tests need to be done to diagnose your ailment.

As for me, I'll keep checking in from time to time - let y'all know how my own choice of treatment is working out.

Best wishes to us all.[/QUOTE]

 
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