Losing size each year, how much?

Anything goes when it comes to ED.
opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Losing size each year, how much?

Postby opolion » Thu May 06, 2021 7:33 am

I have a question on loss of size due to no erections.
So I have progressive ED for over 4 years now, so basically no spontaneous erections at all since 4 years and no morning wood or anything since around a year.
With 100 mg of viagra and a lot of stimulation I can achieve erections and also ejaculate. I try to get my penis erect by stimulation approximately once a day for let's say 10-25 min. I don't use a pump though (don't really believe it makes much difference) but sometimes rings.
I'm really thinking about an implant lately, but I don't have enough money right now. And my public insurance wouldn't cover it, since I don't even have a proper diagnosis for my ED, since it's nerve related but almost impossible to spot the certain type and origin of neuropathy or whatever it exactly is.

In terms of losing size, I read that it can be around 1 to 2,5 cm of penis loss every year. It's hard to say how much I lost exactly so far in the past years since I'm never actually really hard anymore, and can only maintain with stimulation, but in total it doesn't feel like 4 cm less, feels maybe around 1 cm less but it's quite difficult to estimate, could be more as well.

So my question is, are those estimated 1 to 2,5 centimeters of loss each year only occuring if there's absolutely no erections going on, or im general?
Would you recommend to stimulate even more each day? What is your overall experience with loss of size - what decreases have you noticed? What might be recommendable in my case. Thanks in advance

ETGuy71
Posts: 307
Joined: Thu Jul 19, 2018 10:58 pm
Location: Texas

Re: Losing size each year, how much?

Postby ETGuy71 » Thu May 06, 2021 2:23 pm

From my personal experience, I lost an inch in length from ED brought on by venous leak as seen on Doppler ultrasound at urologist office.
My urologist had me get a VED to hopefully regain length. I was put on a twice a day regimen, pump it up and let it hold under pressure for 20 min per session. Stretching the penile tissues and expanding the girth with the fresh blood. I am on a maintenance VED plan now pumping it up for only 10 minutes a day for 5 days a week resting it two days.
I regained the lost inch plus some which is a win! I’ve never use VED and cock ring for erection and sex.
I can get about 70% erect with just manual simulation, but it doesn’t last long, so I use Trimix for full erections. Urologist said that my penis will be in much better condition if and when an implant is needed by using the VED.
I think it’s prudent to say the amount of length loss varies per individual so “in general” is about as accurate as you can get.
If you do not have a “proper diagnosis”, how do you know your ED is nerve related? And if proper diagnosis is all that’s required for your public health to pay for any necessary treatments, why haven’t you seen a urologist and gotten the proper diagnosis? If you have any other questions that you don’t want to take through forum just PM me, I’ll answer promptly. All the best to you.
Diagnosed venous leak. Going with injections rather than implant for the time being.

Lost Sheep
Posts: 6162
Joined: Mon Jul 04, 2016 11:16 pm

Re: Losing size each year, how much?

Postby Lost Sheep » Thu May 06, 2021 3:37 pm

In addition to ETGuy71's excellent response, I note that there is an alternative protocol for VED use.

When I first got a VED, I followed the twice a day 20-30 minute protocol. Later I learned that intermittent vacuum-release-vacuum can do the same tissue stretching (for maintaining elasticity) function, but also performs a second function (which may be just as vital to tissue health). Creating an erection by vacuum for a minute or ss and then letting it go flaccid for 30-30 seconds repeatedly will flush blood through the penile tissues. Granted. some of it depleted venous blood, but some of it will be fresh, oxygenated arterial blood as well. This nutrient and oxygen infused blood is important to all your body's tissues.

You could do both protocols. One at night and one in the morning or however you would like to schedule yourself.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

ETGuy71
Posts: 307
Joined: Thu Jul 19, 2018 10:58 pm
Location: Texas

Re: Losing size each year, how much?

Postby ETGuy71 » Thu May 06, 2021 5:18 pm

Excellent point Lost Sheep. I do pull vacuum and release several times at the initial pumping up, I failed to disclose that detail, and you are correct about elasticity and renewing the blood. I would guess most of the time I do the pump and release for 5 min then last 5 min steady pressure. I did the same when doing the 20 min session 10 min pull release 10 min steady pressure. Thanks for that very important detail.
Diagnosed venous leak. Going with injections rather than implant for the time being.

Benjohn
Posts: 90
Joined: Mon Mar 15, 2021 6:44 am

Re: Losing size each year, how much?

Postby Benjohn » Thu May 06, 2021 5:48 pm

Hi Opolion.

I've recently tried regularly taking 100mg sildenafil in the night (3 hours before I wake up to be precise). I've found this has helped me regain some of my morning wood and I'm hoping this will also help reduce size loss as well as stopping my ED progressing as quickly.

I think when the sildenafil completely stops working I'll go for VED to prevent size loss.

So far I don't think I've lost any length. Maybe a little girth though.
British, 32 yrs old. ED caused by Paraphimosis in 2019. 100mg Sildenafil for sex. Trialled Invicorp as advised by doctor in 2021 but it was too strong. Taking 50mg-75mg of Sildenafil every night at 3am to stimulate morning erections, good response so far.

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Losing size each year, how much?

Postby opolion » Fri May 07, 2021 11:16 am

ETGuy71 wrote:From my personal experience, I lost an inch in length from ED brought on by venous leak as seen on Doppler ultrasound at urologist office.
My urologist had me get a VED to hopefully regain length. I was put on a twice a day regimen, pump it up and let it hold under pressure for 20 min per session. Stretching the penile tissues and expanding the girth with the fresh blood. I am on a maintenance VED plan now pumping it up for only 10 minutes a day for 5 days a week resting it two days.
I regained the lost inch plus some which is a win! I’ve never use VED and cock ring for erection and sex.
I can get about 70% erect with just manual simulation, but it doesn’t last long, so I use Trimix for full erections. Urologist said that my penis will be in much better condition if and when an implant is needed by using the VED.
I think it’s prudent to say the amount of length loss varies per individual so “in general” is about as accurate as you can get.
If you do not have a “proper diagnosis”, how do you know your ED is nerve related? And if proper diagnosis is all that’s required for your public health to pay for any necessary treatments, why haven’t you seen a urologist and gotten the proper diagnosis? If you have any other questions that you don’t want to take through forum just PM me, I’ll answer promptly. All the best to you.


Thanks a lot for your answer. I'm happy to hear that you could regain the lost inch. Now I'm definitely considering getting a VED, prior to an implant. How often do you use the Trimix approximately?

Regarding your questions, well I have seen a lot of doctors, amongst them 3 different urologists, several times. I know 99% certain that my ED is nerve related because I did a Doppler Ultrasound and it said that organically my Penis is fine, meaning no venous leakage. Furthermore I have chronic stinging/tingling pain in my groin and penis since my ED started, which can basically only be nerve pain. Also, I have muscle spasms which slowly developed alongside my ED, around my groin and mainly in ny thighs, which is an indicator for neurons not working properly. In addition, I did a neuro-urological measurement of the evoked potentials in the penis nerves and it showed that there was a significantly low tolerance of sensation left in my penis. Yet it was apparently not sufficient enough for the doctor to state a proper diagnosis. This is just the most devastating thing about it, that I just can't seem to get a proper diagnosis after so many different doctors.

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Losing size each year, how much?

Postby opolion » Fri May 07, 2021 11:20 am

Lost Sheep wrote:In addition to ETGuy71's excellent response, I note that there is an alternative protocol for VED use.

When I first got a VED, I followed the twice a day 20-30 minute protocol. Later I learned that intermittent vacuum-release-vacuum can do the same tissue stretching (for maintaining elasticity) function, but also performs a second function (which may be just as vital to tissue health). Creating an erection by vacuum for a minute or ss and then letting it go flaccid for 30-30 seconds repeatedly will flush blood through the penile tissues. Granted. some of it depleted venous blood, but some of it will be fresh, oxygenated arterial blood as well. This nutrient and oxygen infused blood is important to all your body's tissues.

You could do both protocols. One at night and one in the morning or however you would like to schedule yourself.


Thanks for your advice Lost Sheep. For how long did you use a VED, only shortly before your Implant surgery, or for longer, or are you still using it, on top if having an implant?

opolion
Posts: 30
Joined: Wed Jun 24, 2020 2:26 am

Re: Losing size each year, how much?

Postby opolion » Fri May 07, 2021 11:25 am

Benjohn wrote:Hi Opolion.

I've recently tried regularly taking 100mg sildenafil in the night (3 hours before I wake up to be precise). I've found this has helped me regain some of my morning wood and I'm hoping this will also help reduce size loss as well as stopping my ED progressing as quickly.

I think when the sildenafil completely stops working I'll go for VED to prevent size loss.

So far I don't think I've lost any length. Maybe a little girth though.


Hi Benjohn,
for how long have you been struggling with your ED. And are you currently using the Invicorp injections already, and if yes, how is that? I'm quite afraid of the whole injection stuff

Lost Sheep
Posts: 6162
Joined: Mon Jul 04, 2016 11:16 pm

Re: Losing size each year, how much?

Postby Lost Sheep » Fri May 07, 2021 11:49 am

opolion wrote:
Lost Sheep wrote:In addition to ETGuy71's excellent response, I note that there is an alternative protocol for VED use.

When I first got a VED, I followed the twice a day 20-30 minute protocol. Later I learned that intermittent vacuum-release-vacuum can do the same tissue stretching (for maintaining elasticity) function, but also performs a second function (which may be just as vital to tissue health). Creating an erection by vacuum for a minute or ss and then letting it go flaccid for 30-30 seconds repeatedly will flush blood through the penile tissues. Granted. some of it depleted venous blood, but some of it will be fresh, oxygenated arterial blood as well. This nutrient and oxygen infused blood is important to all your body's tissues.

You could do both protocols. One at night and one in the morning or however you would like to schedule yourself.


Thanks for your advice Lost Sheep. For how long did you use a VED, only shortly before your Implant surgery, or for longer, or are you still using it, on top if having an implant?

The first Medical Journal article I read suggested 60 days as optimal, but the first 30 days gave the bulk of the results. I used the VED for more than a year. The reason is that it took that long for me to find a surgeon I wanted to do the job who was available. I contacted several (including the two most prominently mentioned here on the East Coast - I live in Alaska, by the way) but did not find one in whom I had enough confidence until October 2017.

I do not use a VED now because my pump is high and I cannot get a good seal around the base of my penis. I keep promising myself to machine the mouth of the tube to fit.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

User avatar
bldoink
Posts: 3920
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Losing size each year, how much?

Postby bldoink » Fri May 07, 2021 12:36 pm

opolion,

I know this was already suggested (Simbarn, I think) but how far did you look into the Hard Flaccid Syndrome / Chronic Pelvic Pain Syndrome? (https://www.urologynews.uk.com/features/synopsis/post/hard-flaccid-syndrome) I think you should at least research it and try following treatment protocols. Seeing a professional therapist for the issue would be even better. I fail to see a down side to trying the treatment, certainly before engaging in more invasive treatment. I'm certainly no medical professional so my advice isn't worth much but to me you seem fixated on the nerve damage issue. I think it might be advisable to open you mind to some other diagnoses and solutions.

The Frank Talk Forum administrator seems fairly knowledgeable on this topic. You might consider soliciting his input on the topic.

Good luck.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.


Return to “General Discussion”

Who is online

Users browsing this forum: No registered users and 85 guests