Sharing info from ED specialist

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hallfighter4
Posts: 29
Joined: Wed Dec 06, 2017 7:29 am

Sharing info from ED specialist

Postby hallfighter4 » Thu Dec 21, 2017 7:19 pm

Hey guys,

Been lurking on this forum for a few months now but this is my first post. I’m 21 years old and I have had a venous leak since I was 19. I just had my second visit with a local urologist who specializes in ED. He is trying to find a solution to venous leak ED (besides the penile implant) which I know is relevant for a lot of guys around here.

Since seeing a specialist can be difficult (they are always booked months in advance plus we have busy lives of our own – to say nothing of medical costs) I’ve decided to share all of the information I’ve gotten from him so that it’s publicly available.

But first, a few warnings/disclaimers.

1) I’m not here to give you false hopes of a miracle ED cure that’s “just around the corner.” Put your faith in the proven treatments – pills, injections, VEDs, and implants. I am only making this post to share objective information that is otherwise difficult to find. Personally, I’ve already come to terms with the fact that I will, in all likelihood, be getting an implant someday.
2) Please do not ask me to share the name or location of my doctor. Even if you knew his name it would be months before you could see him and even then your visit probably would not be that productive – his appointments are brief and he tends to dominate the conversation making it difficult for you to ask specific questions. Just read my post instead.
3) I am not a doctor and therefore I am not qualified to give you medical advice. Again I am simply sharing objective information for you to do with as you see fit.

Anyways, here are a few things I’ve gleaned from my doctor.

1) A standard practice for treating venogenic ED (AKA venous leak) is to take 20mg of sildenafil (AKA Viagra) each night before bed. The reasoning here is that this small dose of PDE5 inhibitors will improve one’s nocturnal erections, thereby rehabilitating the penis over time.
-- I’ve been doing this for a few months now and the results were fairly promising at first. But pills have largely lost their efficacy
for me over time so I am no longer as optimistic. I am going to stick with it anyway since generic sildenafil is now available at a reasonable
price. Everyone is different so other guys might have more luck with this approach.
2) Using a Viberect for 5 minutes twice a day can help rehabilitate the penis. He quoted a study that said after a few months of this treatment, erectile quality of patients returned almost to baseline. The pseudoscientific explanation I got was that the Viberect causes very minor damage to the nerves, skin, tissues, etc, of the penis. The body’s natural response to small injuries is to heal (think of a minor cut on your arm), so you are basically trying to force the penis to heal itself
-- If I’m being honest, this sounds like bogus. But I’m probably going to try it anyway since my ED started after an injury so it’s pretty obvious
something didn’t heal right.
3) He is currently doing clinical trials on stem cell therapy for venogenic ED. He did not tell me too much about it but he seemed pretty excited about the results he was getting. I’m going back to see him in May 2018 and he is going to update me on the remainder of the clinical trial then.
-- The discouraging thing here is that if you Google search “frank talk stem cell” you find posts from 2012 about guys having no luck with stem
cell treatment but that it could be “just over the horizon” so to speak. Here we are 5 years later and still no widely accepted stem cell
treatment exists. Given the amazing things doctors have done with stem cells, it seems promising. But at the same time, I’m not willing to
let my life pass me by waiting for some cure that might come
4) He is a member of a society for sexual health/medicine (I’m not sure exactly which one) and is going to a conference in May 2018. At this conference a bunch of the big brains of sexual and reproductive medicine get together to compare notes and share their findings. He said at this conference he hopes to present the results of his stem cell research and also learn of new treatments from his peers in the field. I’m going to see him again in May 2018 after this conference, so if he has anything new he’s going to share it with me then

I’ll be sure to share the results of our next meeting in case he finds any more promising leads. But that will be months from now so don’t hold your breath.

As for me, I’m pretty sure I’ll be getting an implant sometime in the next few years, but I’m willing to wait a little longer to see what happens. In the meantime going to start experimenting with injections.

I hope this post is helpful to you guys, especially if you are having a hard time finding a doctor who specializes in ED.

Best of luck to everyone trying to fix their piece of sh%* penises. ;)
22 w/ ED since 19 after injury

After 2.5 years of terrible ED, condition has improved. Can have sex naturally. Still difficult at times, but I'm happy for now.

If things get worse again: implant

User avatar
Larry10625
Posts: 3711
Joined: Sat Apr 15, 2017 10:56 am
Location: Ontario, CANADA

Re: Sharing info from ED specialist

Postby Larry10625 » Thu Dec 21, 2017 9:12 pm

hallfighter4 wrote:Hey guys,

Been lurking on this forum for a few months now but this is my first post. I’m 21 years old and I have had a venous leak since I was 19. I just had my second visit with a local urologist who specializes in ED. He is trying to find a solution to venous leak ED (besides the penile implant) which I know is relevant for a lot of guys around here.

Since seeing a specialist can be difficult (they are always booked months in advance plus we have busy lives of our own – to say nothing of medical costs) I’ve decided to share all of the information I’ve gotten from him so that it’s publicly available.

But first, a few warnings/disclaimers.

1) I’m not here to give you false hopes of a miracle ED cure that’s “just around the corner.” Put your faith in the proven treatments – pills, injections, VEDs, and implants. I am only making this post to share objective information that is otherwise difficult to find. Personally, I’ve already come to terms with the fact that I will, in all likelihood, be getting an implant someday.
2) Please do not ask me to share the name or location of my doctor. Even if you knew his name it would be months before you could see him and even then your visit probably would not be that productive – his appointments are brief and he tends to dominate the conversation making it difficult for you to ask specific questions. Just read my post instead.
3) I am not a doctor and therefore I am not qualified to give you medical advice. Again I am simply sharing objective information for you to do with as you see fit.

Anyways, here are a few things I’ve gleaned from my doctor.

1) A standard practice for treating venogenic ED (AKA venous leak) is to take 20mg of sildenafil (AKA Viagra) each night before bed. The reasoning here is that this small dose of PDE5 inhibitors will improve one’s nocturnal erections, thereby rehabilitating the penis over time.
-- I’ve been doing this for a few months now and the results were fairly promising at first. But pills have largely lost their efficacy
for me over time so I am no longer as optimistic. I am going to stick with it anyway since generic sildenafil is now available at a reasonable
price. Everyone is different so other guys might have more luck with this approach.
2) Using a Viberect for 5 minutes twice a day can help rehabilitate the penis. He quoted a study that said after a few months of this treatment, erectile quality of patients returned almost to baseline. The pseudoscientific explanation I got was that the Viberect causes very minor damage to the nerves, skin, tissues, etc, of the penis. The body’s natural response to small injuries is to heal (think of a minor cut on your arm), so you are basically trying to force the penis to heal itself
-- If I’m being honest, this sounds like bogus. But I’m probably going to try it anyway since my ED started after an injury so it’s pretty obvious
something didn’t heal right.
3) He is currently doing clinical trials on stem cell therapy for venogenic ED. He did not tell me too much about it but he seemed pretty excited about the results he was getting. I’m going back to see him in May 2018 and he is going to update me on the remainder of the clinical trial then.
-- The discouraging thing here is that if you Google search “frank talk stem cell” you find posts from 2012 about guys having no luck with stem
cell treatment but that it could be “just over the horizon” so to speak. Here we are 5 years later and still no widely accepted stem cell
treatment exists. Given the amazing things doctors have done with stem cells, it seems promising. But at the same time, I’m not willing to
let my life pass me by waiting for some cure that might come
4) He is a member of a society for sexual health/medicine (I’m not sure exactly which one) and is going to a conference in May 2018. At this conference a bunch of the big brains of sexual and reproductive medicine get together to compare notes and share their findings. He said at this conference he hopes to present the results of his stem cell research and also learn of new treatments from his peers in the field. I’m going to see him again in May 2018 after this conference, so if he has anything new he’s going to share it with me then

I’ll be sure to share the results of our next meeting in case he finds any more promising leads. But that will be months from now so don’t hold your breath.

As for me, I’m pretty sure I’ll be getting an implant sometime in the next few years, but I’m willing to wait a little longer to see what happens. In the meantime going to start experimenting with injections.

I hope this post is helpful to you guys, especially if you are having a hard time finding a doctor who specializes in ED.

Best of luck to everyone trying to fix their piece of sh%* penises. ;)



Welcome to Frank Talk. Your post was very informative... thank you. :)

Larry
Moderator
51 years old, married 29 years. Implanted Mar 30/17 by Dr. Brock of London, Ont, CANADA. (AMS 700 CX 18 + 2). Had implant removed Apr 29/17 due to Septic Shock. Liposuction By Dr. Gan and re-implant by Dr. Brock (AMS LGX 15 + 2) Dec 14/17.

ED2013
Posts: 1017
Joined: Tue Mar 05, 2013 8:15 pm

Re: Sharing info from ED specialist

Postby ED2013 » Sat Dec 23, 2017 6:11 pm

How bad is your vl ?
Ams 700 cx. Dr Karpman.

hallfighter4
Posts: 29
Joined: Wed Dec 06, 2017 7:29 am

Re: Sharing info from ED specialist

Postby hallfighter4 » Tue Dec 26, 2017 3:00 am

ED2013 wrote:How bad is your vl ?


ED2013,

Ever since the injury, I can get an erection that's about 60-70% full. But it often feels like a chore to achieve these erections and they are easily lost.

More quantitatively, I looked at my Doppler study results and the numbers (PSV, EDV, and RI) put me in the "mild to moderate" category. This makes sense since 80-100 mg of Viagra used to give me raging erections.

However, even the maximum dosage of PDE5i pills don't do it for me anymore. I'm not sure if this means the leak has gotten worse since the Doppler or if there is something else at play.

EDIT: I PM'ed you
22 w/ ED since 19 after injury

After 2.5 years of terrible ED, condition has improved. Can have sex naturally. Still difficult at times, but I'm happy for now.

If things get worse again: implant

jelquinginjury
Posts: 195
Joined: Wed Feb 15, 2017 9:52 am

Re: Sharing info from ED specialist

Postby jelquinginjury » Fri Dec 29, 2017 6:42 am

How did you get injuried?
Injury that caused venous leak.
In my 20s thinking about implant

Echegollen
Posts: 91
Joined: Sun Feb 01, 2015 12:40 pm
Location: Canada

Re: Sharing info from ED specialist

Postby Echegollen » Wed Mar 14, 2018 2:28 pm

Very interesting post!

I was also looking into getting stem cell therapy, but wanted to read some feedbacks before... It is a brand new procedure so not much feedbacks yet.

Looking forward to read your posts in May 2018 my friend.
I'm 33 years old. Never was able to maintain my erections for more than 1 minute. Pills don't work. Had sclerotherapy by Dr. Kuehhas in Austria in 2016. Didn't work. Injections (Caverject) are the only things that gave me good results.

Trust-Jesus
Posts: 13
Joined: Sat Mar 31, 2018 10:17 am

Re: Sharing info from ED specialist

Postby Trust-Jesus » Mon Apr 02, 2018 6:27 am

Thank you for sharing hallfighter4

My opinion ... you still very young to think about implant.

My advise : retrain your pens to hold the blood inside . I mean try to masturbation but without reaching orgasm . Do that on daily basis ( 5 days per week ) for at least 20 minutes per session ....

You can also try pelvic floor exercise and legal....

L.argenin with pegnocenol would help you slit.

Good luck
39 years old married since 2007. I will keep fighting against my ED . I believe I can reverse it. Just pray for me. 8-)

hope794
Posts: 11
Joined: Wed May 30, 2018 7:59 am

Re: Sharing info from ED specialist

Postby hope794 » Fri Aug 17, 2018 10:02 am

no news?
24 yo from Italy.Peyronie's disease probably in 2015.Since then,penis bends of about 10°.I don't know if inflammation is going on,i fear yes. Moderate ED since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting.

naginati
Posts: 134
Joined: Fri Mar 30, 2018 1:03 pm

Re: Sharing info from ED specialist

Postby naginati » Tue Sep 04, 2018 6:46 am

It's a shame he hasn't come back. Interesting to read his account.

I too have found that Viagra has lost it's effectiveness. This time last year I would be rock hard on 50mg. Now 200mg doesn't do anything.

I think it's the leak getting worse, but also resistance.

I don't feel the side effects nearly as bad as I did, which seems to suggest tolerance has developed.

Going to try cialis as I heard alternating between the two can reduce the rate of tolerance development.
30 years old. Venous leakage from jelqing. Soft glans and difficulty with cavernosal erection. Using osbon tension bands to cope, works so far. Good erection with the bands. Hope it doesn't get worse.

FMLFML85
Posts: 51
Joined: Thu May 10, 2018 12:18 am

Re: Sharing info from ED specialist

Postby FMLFML85 » Wed Sep 05, 2018 1:26 am

@ Naginati I’m gonna bet it’s not your vieneous leak but tolerance to the drug. If you don’t have side effects like face flushing then it’s not working. Viagra stopped working for me after 6 months but every now and then it would work again. The past two weeks I have taking viagra 4 times and I have gotten rock hard every time. I don’t know why it’s working atm but I’m hoping it’s because on off days I have been injecting trimix. Please do your self a favor and get prescribed trimix. If you have tried injections before trimix, trimix is a lot better then basic injections. The basic is just one drug while trimix is 3. Also the basic drug (alprostadil) max dose is 10 units while trimix is 100. Trimix’s strength can also be increased to be more powerful. I haven’t even tried quadmix yet. With viagra (1 active ingredient) you can dose 20-100 mg but with trimix you can dose 5-100 units plus change the strength of the drug.
33 years old, devorced. ED from abusing a penis pump. Pills having little effect, starting carverject theropudically june 13th


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