28 y/o New Member Venous Leak

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crocmoon808
Posts: 4
Joined: Wed Sep 23, 2020 1:08 am

28 y/o New Member Venous Leak

Postby crocmoon808 » Thu Sep 24, 2020 4:28 am

Hello to all, glad I came across this forum. I am 28 y/o healthy fit in FL that finally was diagnosed with Venous leak. It has been a long road with many doctors discounting what I was saying and trying different things. Maybe some of my experience can help others out. all. I first started noticing my ED problem around 24 when in different situations I would not be able to get hard on command with the girl I was with. I believe I have lost 2 potential relationships because of this, and even though the thought of this has become mentally taxing, I understand because at the end of the day what girl wants to be with an impotent man. I guess I was in denial but I convinced myself it would be due to the alcohol I was drinking the night of or night before. Many failures and using this as an excuse. I don't get morning erections anymore unless taking PDE5 inhibitors/pt 141 the night or couple nights before. PDE5 Inhibitors have been hit or miss I feel. Taking it after a couple of hours after taking PT-141 it has worked twice before. If I take PT 141 by itself I have not noticed any change or my member feels like it wants to go up and it just fadeds though after being semi-erect. I am going to try a couple more different types to rule this out completely because I do find it odd 24+ hours after it seems to have somewhat of an effect compared to up to 8 or so hours after injection. I am able to masterbate but like most I have read on here once taking hand off the erection disappears.

Originally I thought the problem could have been hormone related after receiving a blood test that showed my testosterone was in the low 100's about a year and a half ago. I have been on TRT ever since and no change related to erections. My prolactin has also been higher than average 4 times before but also has been within range a couple of times as well. I took a MRI to see if there might have been a pituitary tumor, nothing was found. Also took a suppression test with testing for prolactin, that was negative as well. So doctors have discounted this as being a problem.

I then thought the problem could have been a blood flow related issue. I thought gainswave could have been the solution I was looking for b even though I exercise at least 6 times a week, lift weights, run and play sports. Or I thought I could have had some plaque build up down there. I have done a total of 18 treatments still nothing. Most recently I have tried the PRP shot that also has had no effect 5 weeks in but I do know it takes time even though I know there could be nothing that happens.

The only thing that works for me is bi-mix which I can inject and be stiff for hours. Of course it is frustrating I'm sure like most trying to plan out your injection when you are trying to get intimate with someone and not having that spontaneous moment whenever you and the girl you are with want it. This week after the doctor did not give me my results almost 6 months ago from a doppler test, I asked for the results. Apparently my blood inflow is great but of course I am unable to maintain. My doctor said the average number maintaning through the veins should be a 5, mine is at a 13. Apologies for probably not explaining that medically correct. That is when reality set in and it is almost like a numb feeling accepting it.

And so I move on with my bi-mix injections. I just bought a small portable cooler which I will be trying out, crossing my fingers it works in the right situations although sometimes in the past I have missed. In the meantime I will try more pelvic floor exercises as I have seen sometimes that can help. I have seen that sometimes the injections don't work over time, which then I will be put in the position of whether to get an implant or not which is something that I never thought I would have had to deal with in my life or this young and will be an even harder pill to swallow.

Looking forward to learning and reading more information on here and to all I hope that your condition gets better no matter what the circumstance. No one deserves this. I would not wish ED in any capacity upon anyone not even a worst enemy.
Much love

vajim1
Posts: 252
Joined: Tue Jan 16, 2018 2:19 pm

Re: 28 y/o New Member Venous Leak

Postby vajim1 » Fri Sep 25, 2020 9:45 am

Glad the injections work for you, some guys have used them more more than 10 years so don't sweat that.
They did not work for me though.
76 year old fart. Prostate removed Oct. 9, 2017,Psa 30 days after .15 next Psa .2. 37 Radiation treatments for recurrent cancer, 1 year out Psa .033 ZERO ERECTIONS, implanted Sept 5 2019 Dr. Lentz Duke Raleigh N.C. Titan 22cm.

sweaterfan
Posts: 23
Joined: Sun Sep 06, 2020 7:39 pm
Location: Austin TX

Re: 28 y/o New Member Venous Leak

Postby sweaterfan » Fri Sep 25, 2020 10:12 am

Thanks for posting. Keep an eye out for any signs of Peyronies. I developed it shortly after starting alprostadil injections. With my venous leak, I'm erect for 5 minutes, then flacid for 5, then erect again for 5, then flacid for 5,...I tried TriMix with the same result. Going to try a ring to see if that helps.

Ah, to be 28 again... :)
Born 1956, TRT, Peyronies (no improvement after 1 cycle of Xiaflex so discontinued), using alprostadil but have possible VL. Considering an implant. Enlarged prostate (79 grams vs 20-25 grams), taking medication to shrink it and looking into aquablation.

Simbarn
Posts: 125
Joined: Tue Mar 10, 2020 8:08 pm

Re: 28 y/o New Member Venous Leak

Postby Simbarn » Sun Sep 27, 2020 6:48 pm

I see that you mention your total testosterone was in the "low 100's". What level was that exactly? What were the lab ranges?
If your T was very low for an extended period of time, structural changes in the penis can occur, resulting in CVOD.

Now that you have a more normal level of T and you are still young it may be worth considering this:
The combination of exogenous T and a low dose PDE5 inhibitor daily over a period of time may help to reverse some of these structural changes that could have occurred due to low T.
Erectile function will not suddenly improve for many when starting T replacement as testosterone works in a more indirect fashion by maintaining the functional erectile structures within the penis. It also signals the growth of the penis when puberty starts. Male to female transsexuals can often still get an erection in their transition period. This will change as their penis suffers from the lack of 'maintenance" due to the loss of testosterone and nocturnal erections, therefore smooth muscle quantity declines and endothelial function deteriorates in the erectile tissues. This can cause CVOD, which is a venous leak.
Testosterone will also help to boost erectile function by another indirect pathway; stimulating libido in the brain. However, if sufficient damage has been done by a lack of T, then this pathway will not be enough to reinstate erectile function.
This is why so many men who undergo T replacement do not see an immediate improvement in erectile function. It can take time. Some never see it as they may be too old or the damage is too extensive.

There has been quite a lot of research into the chronic use of PDE5 inhibitors with regard to the restorative effect they may have on the structural elements deep within the corpus cavernosum.
It is possible that after a couple of years (this time frame may vary) of the combination of Testosterone and daily low dose Cialis, loss of function due to the above mentioned conditions, may improve substantially at a young age. Talk to your specialist about it. If they don’t know about this therapy, then I suggest you find a doctor who does.
If you can improve your nightly erections with the above therapy, this will be a starting point as all the repair work will be done when these occur. The loss of nocturnal erections, can in itself cause the above issues. Nocturnal erections are directly dependent on Testosterone. Sexually initiated erections are not.
Maintaining a healthy lifestyle with plenty of cardiovascular exercise will be very helpful as well.

It is promising that bi-mix works for you as that means that you still have adequate smooth muscle content in your penis to maintain venous occlusion. It is also good that you have noticed that after taking PDE5 inhibitors for a couple of nights that your nocturnal erections occur again. The chronic use (daily or nightly) of Cialis ( I mention Cialis because of its long half-life and therefore duration of action in the body), should reinstate these nightly maintenance erections on a regular basis which is vital IMO.
It is also important that the amount of T you are taking is not excessive and is being administered in a manner which does not cause excessive conversion into estrogen. This can cause erectile dysfunction just on its own.
Age 56, ED issues for 10-15 years, on T replacement. Currently using generic Tadalafil 5mgs daily.

crocmoon808
Posts: 4
Joined: Wed Sep 23, 2020 1:08 am

Re: 28 y/o New Member Venous Leak

Postby crocmoon808 » Mon Sep 28, 2020 11:24 pm

vajim1 wrote:Glad the injections work for you, some guys have used them more more than 10 years so don't sweat that.
They did not work for me though.


Yes I hope I will be able to use them while I try and figure things out. And I am sorry to hear I hope something else does

crocmoon808
Posts: 4
Joined: Wed Sep 23, 2020 1:08 am

Re: 28 y/o New Member Venous Leak

Postby crocmoon808 » Mon Sep 28, 2020 11:25 pm

sweaterfan wrote:Thanks for posting. Keep an eye out for any signs of Peyronies. I developed it shortly after starting alprostadil injections. With my venous leak, I'm erect for 5 minutes, then flacid for 5, then erect again for 5, then flacid for 5,...I tried TriMix with the same result. Going to try a ring to see if that helps.

Ah, to be 28 again... :)


I definitely will keep an eye out for that, and sorry to hear. I hope the ring helps I am going to look into one as well as once I compare them, as I think they can help

crocmoon808
Posts: 4
Joined: Wed Sep 23, 2020 1:08 am

Re: 28 y/o New Member Venous Leak

Postby crocmoon808 » Mon Sep 28, 2020 11:32 pm

Simbarn wrote:I see that you mention your total testosterone was in the "low 100's". What level was that exactly? What were the lab ranges?
If your T was very low for an extended period of time, structural changes in the penis can occur, resulting in CVOD.

Now that you have a more normal level of T and you are still young it may be worth considering this:
The combination of exogenous T and a low dose PDE5 inhibitor daily over a period of time may help to reverse some of these structural changes that could have occurred due to low T.
Erectile function will not suddenly improve for many when starting T replacement as testosterone works in a more indirect fashion by maintaining the functional erectile structures within the penis. It also signals the growth of the penis when puberty starts. Male to female transsexuals can often still get an erection in their transition period. This will change as their penis suffers from the lack of 'maintenance" due to the loss of testosterone and nocturnal erections, therefore smooth muscle quantity declines and endothelial function deteriorates in the erectile tissues. This can cause CVOD, which is a venous leak.
Testosterone will also help to boost erectile function by another indirect pathway; stimulating libido in the brain. However, if sufficient damage has been done by a lack of T, then this pathway will not be enough to reinstate erectile function.
This is why so many men who undergo T replacement do not see an immediate improvement in erectile function. It can take time. Some never see it as they may be too old or the damage is too extensive.

There has been quite a lot of research into the chronic use of PDE5 inhibitors with regard to the restorative effect they may have on the structural elements deep within the corpus cavernosum.
It is possible that after a couple of years (this time frame may vary) of the combination of Testosterone and daily low dose Cialis, loss of function due to the above mentioned conditions, may improve substantially at a young age. Talk to your specialist about it. If they don’t know about this therapy, then I suggest you find a doctor who does.
If you can improve your nightly erections with the above therapy, this will be a starting point as all the repair work will be done when these occur. The loss of nocturnal erections, can in itself cause the above issues. Nocturnal erections are directly dependent on Testosterone. Sexually initiated erections are not.
Maintaining a healthy lifestyle with plenty of cardiovascular exercise will be very helpful as well.

It is promising that bi-mix works for you as that means that you still have adequate smooth muscle content in your penis to maintain venous occlusion. It is also good that you have noticed that after taking PDE5 inhibitors for a couple of nights that your nocturnal erections occur again. The chronic use (daily or nightly) of Cialis ( I mention Cialis because of its long half-life and therefore duration of action in the body), should reinstate these nightly maintenance erections on a regular basis which is vital IMO.
It is also important that the amount of T you are taking is not excessive and is being administered in a manner which does not cause excessive conversion into estrogen. This can cause erectile dysfunction just on its own.



I appreciate this insight and information. I will have to look back at my labs to find out what the ranges were exactly for that first test, but I know the number was in the 120's for total T. And I still have not been able to have nocturnal erections much even on the TRT unless I take a PDE5 inhibitor the night of or night before. I have reached out to my doctor to see if I can try the daily lose dose of Cialis and see if this helps and can hope that there is some repair that occurs.

I think it is interesting what you said about the smooth muscle content and I look at that as a positive. I tried to ask my doctor how the injections could work for that period of time and he had said because so much blood is rushing into the penis it over compensates for the blood leaking out which sounds like that could be a false statement.

Do you think that using a vacuum erection device can possibly help with this as well and possibly repair over time?

Stew52
Posts: 256
Joined: Fri Apr 13, 2018 4:22 pm
Location: Central TX

Re: 28 y/o New Member Venous Leak

Postby Stew52 » Wed Sep 30, 2020 8:54 pm

I've been on some kind of restorative journey.
Last edited by Stew52 on Sat Oct 10, 2020 10:30 pm, edited 3 times in total.
NOT an MD. 68, M48 yrs, CenTX US. Inj since 12/16 a yr after pills stopped working. Caverject for a yr. 1/18 Tri-Mix at 30 pap/2 phent/40 pge @0.3ml supp w/0.1-0.2ml 60mcg/ml PGE1 on occasion for a longer session. DE/Anorgasmia setting in since 5/19

Stew52
Posts: 256
Joined: Fri Apr 13, 2018 4:22 pm
Location: Central TX

Re: 28 y/o New Member Venous Leak

Postby Stew52 » Wed Sep 30, 2020 8:59 pm

crocmoon808 wrote:I appreciate this insight and information. I will have to look back at my labs to find out what the ranges were exactly for that first test, but I know the number was in the 120's for total T. And I still have not been able to have nocturnal erections much even on the TRT unless I take a PDE5 inhibitor the night of or night before. I have reached out to my doctor to see if I can try the daily lose dose of Cialis and see if this helps and can hope that there is some repair that occurs.

I think it is interesting what you said about the smooth muscle content and I look at that as a positive. I tried to ask my doctor how the injections could work for that period of time and he had said because so much blood is rushing into the penis it over compensates for the blood leaking out which sounds like that could be a false statement.

Do you think that using a vacuum erection device can possibly help with this as well and possibly repair over time?


I've been on some kind of restorative journey. Finding what SImbarn says is right on. My T was in the very low 200's but for a long time undetected. Little did they know then. Nocturnal and Morning wood has returned with a vengence now. Things are looking a bit "up". Here is a summary of my program. My Uro put me on a daily 5 to 10 mg of Cialis. I'm doing 5 to leave some room is I become more immune. I'm doing something every day on top to engorge the unit. Of course I'm 68 now and in a much different state, but then not so much. viewtopic.php?f=3&t=15485
NOT an MD. 68, M48 yrs, CenTX US. Inj since 12/16 a yr after pills stopped working. Caverject for a yr. 1/18 Tri-Mix at 30 pap/2 phent/40 pge @0.3ml supp w/0.1-0.2ml 60mcg/ml PGE1 on occasion for a longer session. DE/Anorgasmia setting in since 5/19


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