Any success cases for treating venous leak?

Anything goes when it comes to ED.
s7utty
Posts: 179
Joined: Thu May 19, 2022 6:09 am

Re: Any success cases for treating venous leak?

Postby s7utty » Mon Mar 27, 2023 11:09 am

Stenlie_ wrote:.


btw all those what u mentioned about days with 90% and days with 70% etc bro is it all with or without pills ?
I ask because im doing my best to not rely on them and currently i can manage what you typed above without pills. Also do get some morning erections (wouldnt call it „wood”) and also without pills.

How about you?
28 years old. some form of ED always with me entire life.
///
19th May 22' - doppler, 10mcg PGE1, good inflow, terrible outflow (EDV) of 15cm/s.
Currently about to visit Paris to dr Allaire seeking for further help.

AntonS
Posts: 19
Joined: Wed Mar 15, 2023 3:47 pm

Re: Any success cases for treating venous leak?

Postby AntonS » Mon Mar 27, 2023 7:44 pm

curious_ed wrote:Hiya people,
Glad to join this forum today; looks like tons of insightful knowledge and information share.

I'm 45, diagnosed with venous leak in Sep22 with an EDV of 11 cm/s. Been having ED for the past 14+ years, was on Viagra 20 mg which worked until last year and then it stopped. Went to an urologist, who initially said everything looked fine - on my insistence went for the Doppler Ultrasound and diagnosed, Venous leak. He prescribed a high dosage Viagra and asked me to enjoy which as I understand means am on borrowed time.

Reading through the wide world of web, has anyone here with mild to moderate, venous leak experienced success with just kegel exercies, PRP shot or Shockwave therapy?

Came across this, which got published only a few months ago: https://www.intechopen.com/online-first/85193 so wanted to see if anyone on the forums has pursued a surgical treatment, called penile dorsal vein ligation?

Ed

don't even think about doing a dorsal vein ligation. This operation completely ruined my life! And now I'm on the verge of suicide. it does not help anyone, but only makes it worse than it was before. ligation is performed to earn money for this operation, and then for the operation to install the implant. this scheme has been around for a long time.

s7utty
Posts: 179
Joined: Thu May 19, 2022 6:09 am

Re: Any success cases for treating venous leak?

Postby s7utty » Mon Mar 27, 2023 7:59 pm

AntonS wrote:
curious_ed wrote:Hiya people,
Glad to join this forum today; looks like tons of insightful knowledge and information share.

I'm 45, diagnosed with venous leak in Sep22 with an EDV of 11 cm/s. Been having ED for the past 14+ years, was on Viagra 20 mg which worked until last year and then it stopped. Went to an urologist, who initially said everything looked fine - on my insistence went for the Doppler Ultrasound and diagnosed, Venous leak. He prescribed a high dosage Viagra and asked me to enjoy which as I understand means am on borrowed time.

Reading through the wide world of web, has anyone here with mild to moderate, venous leak experienced success with just kegel exercies, PRP shot or Shockwave therapy?

Came across this, which got published only a few months ago: https://www.intechopen.com/online-first/85193 so wanted to see if anyone on the forums has pursued a surgical treatment, called penile dorsal vein ligation?

Ed

don't even think about doing a dorsal vein ligation. This operation completely ruined my life! And now I'm on the verge of suicide. it does not help anyone, but only makes it worse than it was before. ligation is performed to earn money for this operation, and then for the operation to install the implant. this scheme has been around for a long time.


Yes ligation is bad. I also heard that. Only embolization but probably in my case even well done embolization by best surgeon/radiologist wont help at all.
28 years old. some form of ED always with me entire life.
///
19th May 22' - doppler, 10mcg PGE1, good inflow, terrible outflow (EDV) of 15cm/s.
Currently about to visit Paris to dr Allaire seeking for further help.

AntonS
Posts: 19
Joined: Wed Mar 15, 2023 3:47 pm

Re: Any success cases for treating venous leak?

Postby AntonS » Tue Mar 28, 2023 6:34 am

s7utty wrote:
AntonS wrote:
curious_ed wrote:Hiya people,
Glad to join this forum today; looks like tons of insightful knowledge and information share.

I'm 45, diagnosed with venous leak in Sep22 with an EDV of 11 cm/s. Been having ED for the past 14+ years, was on Viagra 20 mg which worked until last year and then it stopped. Went to an urologist, who initially said everything looked fine - on my insistence went for the Doppler Ultrasound and diagnosed, Venous leak. He prescribed a high dosage Viagra and asked me to enjoy which as I understand means am on borrowed time.

Reading through the wide world of web, has anyone here with mild to moderate, venous leak experienced success with just kegel exercies, PRP shot or Shockwave therapy?

Came across this, which got published only a few months ago: https://www.intechopen.com/online-first/85193 so wanted to see if anyone on the forums has pursued a surgical treatment, called penile dorsal vein ligation?

Ed

don't even think about doing a dorsal vein ligation. This operation completely ruined my life! And now I'm on the verge of suicide. it does not help anyone, but only makes it worse than it was before. ligation is performed to earn money for this operation, and then for the operation to install the implant. this scheme has been around for a long time.


Yes ligation is bad. I also heard that. Only embolization but probably in my case even well done embolization by best surgeon/radiologist wont help at all.

I am now also being offered embolization, but I am thinking, because I think that after ligation, embolization is unlikely to help. I know several cases when the embrlization did not help at all or helped only for a while. I want to tell my story here soon, there has never been such a tin in the whole history. Have you been tested for May-Thurner syndrome?

curious_ed
Posts: 9
Joined: Sun Mar 26, 2023 1:54 pm

Re: Any success cases for treating venous leak?

Postby curious_ed » Tue Mar 28, 2023 8:51 am

Thanks people for your comments and feedback.
You all are right - came across horror stories reading about Herwig and vein ligation: viewtopic.php?f=19&t=5226&hilit=herwig
This person in Spain is suggesting decent success rates for vein ligation but perhaps also a quack? https://www.andromedi.com/en/sexual-med ... nous-leak/

@ s7utty - Currently almost zero on morning erections; seem to have progressively gone worse. 3-4 years ago, I would get some esp if I had a healthy smoothie for dinner with blueberries, avocado, kale, flax seeds et al but not anymore. Got Covid beginning of 2022 and things became worse after so not sure if there is a connection. Am otherwise in fairly good health.

Is there material on embolization I can read? Offered in the US?

What are your views on PRP helping with venous leak? Any success?

s7utty
Posts: 179
Joined: Thu May 19, 2022 6:09 am

Re: Any success cases for treating venous leak?

Postby s7utty » Tue Mar 28, 2023 11:17 am

curious_ed wrote:Thanks people for your comments and feedback.
You all are right - came across horror stories reading about Herwig and vein ligation: viewtopic.php?f=19&t=5226&hilit=herwig
This person in Spain is suggesting decent success rates for vein ligation but perhaps also a quack? https://www.andromedi.com/en/sexual-med ... nous-leak/

@ s7utty - Currently almost zero on morning erections; seem to have progressively gone worse. 3-4 years ago, I would get some esp if I had a healthy smoothie for dinner with blueberries, avocado, kale, flax seeds et al but not anymore. Got Covid beginning of 2022 and things became worse after so not sure if there is a connection. Am otherwise in fairly good health.

Is there material on embolization I can read? Offered in the US?

What are your views on PRP helping with venous leak? Any success?



I dont believe if any shockwave or prp shit will help us.
i have morning erections but definitely not morning wood. they last short after wakeup or when i start to roll on my sides.

Im tired of this and just wanna get to know my diagnose at least. I hope CT caverno will help to finally understand what is and how severe is my problem. Then I might think about potential fixes. But if i will undergo any kind of treatment i will decide for embolization

Take a look at this article form
pubmed it is 7 days old:

https://pubmed.ncbi.nlm.nih.gov/36949182/

At least if embolization will help for a bit this will even more prove its true psychical venous leak and then i go for implant but this is the worst nightmare.
28 years old. some form of ED always with me entire life.
///
19th May 22' - doppler, 10mcg PGE1, good inflow, terrible outflow (EDV) of 15cm/s.
Currently about to visit Paris to dr Allaire seeking for further help.

Mazzio
Posts: 188
Joined: Thu Jan 07, 2016 2:58 pm

Re: Any success cases for treating venous leak?

Postby Mazzio » Tue Mar 28, 2023 12:16 pm

You are lucky that there are several treatment options. I have had venous leak all my life and in the beginning there was no help for this issue. No pills, no injections, the first generation implants were not used in my country. I spent about 20 years without sex with partners living lonely and dreadful life. So from my perspective you are a lucky man.

There is a lot of negative comments about shockwave. With that treatment you must know what to expect. If you are already on pill you might get things working with smaller amount of medicine. Or if you are already on injection you might get back to the pill. Shockwave will not cure your venouse leak. The number of session with shockwave is usually 6 times but it depends of the case. You might need 15 sessions.
65 yrs, had venous leak all my life, sildenafil and other pills don't work anymore properly, using Caverject with pills.

25yearsold
Posts: 92
Joined: Wed Jun 28, 2017 7:12 am

Re: Any success cases for treating venous leak?

Postby 25yearsold » Wed Mar 29, 2023 5:04 pm

I had dorsal vein embolization done 4-5 years ago.

There was pronounced positive effect first 10-20 days, then it disappeared slowly.
Some residual effect remained for months (?), that also disappeared gradually in months to years.

I had some loss of length after the procedure (i thought it was only possibility in venous leak SURGERY, not intravascular procedure like embolization, sclerotherapy etc). Lost length came with time.

I also have some loss of sensitivity, i have delayed ejaculation now. I am not %100 sure if it is related to embolization procedure, but it might, as there was incision on the dorsal side of penis at procedure.

My doctor was enthusiastic before the intervention, as i was a so-called ideal candidate (no other health issues, no arterial atherosclerotic problems, no appearent hormonal issues etc). Unfortunately it failed.

s7utty
Posts: 179
Joined: Thu May 19, 2022 6:09 am

Re: Any success cases for treating venous leak?

Postby s7utty » Wed Mar 29, 2023 6:07 pm

25yearsold wrote:I had dorsal vein embolization done 4-5 years ago.

There was pronounced positive effect first 10-20 days, then it disappeared slowly.
Some residual effect remained for months (?), that also disappeared gradually in months to years.

I had some loss of length after the procedure (i thought it was only possibility in venous leak SURGERY, not intravascular procedure like embolization, sclerotherapy etc). Lost length came with time.

I also have some loss of sensitivity, i have delayed ejaculation now. I am not %100 sure if it is related to embolization procedure, but it might, as there was incision on the dorsal side of penis at procedure.

My doctor was enthusiastic before the intervention, as i was a so-called ideal candidate (no other health issues, no arterial atherosclerotic problems, no appearent hormonal issues etc). Unfortunately it failed.


Thanks for sharing your experience. I assume before embolization you had done CT cavernosography in order to find out where is the leak, how severe it is.
Could you kindly please elaborate in this field ? What were doctor's thoughts on your case ?

Honestly I had huge hopes about this embolization process - until I saw your comment.
I will have CT cavernosography performed in middle of May if im correct in France where I plan to travel as here, in Poland nobody performs that. We basically have one good doctor in ED deparment and he just perform implant operation.

How old were you when embolization was performed ? Were pills not working to have intercourse already when you went for embolization ?

Have you ever had morning/nighttime erections before knowing diagnose of VL, and before going embolization ?

Also how is it even possible that you would loss lenght of penis due to embolization ? How it could be affected ?
Maybe you are just not experiencing your full potential size of erection so its not fulfilled and as a result there is smaller looking penis ?

If embolization had positive effect what made it go back to start point ? Cant it be repeated once again ?


It would be nice if you could respond to those questions as it will be very usefull for me and many many others struggling with this terrible diseae.

Best Regards
28 years old. some form of ED always with me entire life.
///
19th May 22' - doppler, 10mcg PGE1, good inflow, terrible outflow (EDV) of 15cm/s.
Currently about to visit Paris to dr Allaire seeking for further help.

25yearsold
Posts: 92
Joined: Wed Jun 28, 2017 7:12 am

Re: Any success cases for treating venous leak?

Postby 25yearsold » Wed Mar 29, 2023 8:01 pm

I will answer briefly;
No ct done, its not necessary, doctors always target main big veins, procedure is same in all patients, not case by case
My doc was optimistic before intervention, but reluctant afterwards for repeating procedure
I was 26, pills were not working well
No morning erections
Loss of length was temporary and not a big deal (now easy to say, but it was scary and kinda depressing then), i guess scarred veins were retracting the penis, as the scar tissue (inside the veins) caused by embolization softened, retraction disappeared and penile length restored. My doctor told me i can do traction to fasten the process but i didnt do any traction and it restored itself anyway. (In 2-3 months time)
Embolization had some positive effect at first then it vanished, i dont know why. But its the way it is if you look at the articles or anectodal patient experiences on forums. Initial improvement then gradual decrease (for some in weeks, for others in months)
It can be repeated if it is technically possible, in my case it probably isnt. Because i had a doppler last year and i was told my dorsal vein is mostly occluded and there is very little flow there. So it wouldnt be possible for doctors to enter my vein and embolize it one more time.
And my ED is now probably at its worst, even though my vein is mostly occluded. So embolizing, ligating, cutting, stripping or whatever you do for stopping flow in your veins, is not the key for overcoming venous leak unfortunately, at least in most cases. Thats why it is abondoned by most urologists and experimental for the remaining few.

So, in my opinion both venous leak surgery and embolization is not curative in long term in most cases. They both may have serious side effects, but risk is much greater in surgery. (Especially nerve damage, scarring and permanent length loss)


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