30 w ed for 3 years from Penis Extender / Pumping

Anything goes when it comes to ED.
CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Wed Sep 02, 2020 12:28 pm

I'm 30 w ed for 3 years.

First injury: I felt a "pop" sensation left side in the pelvic area followed by a loss of erection. I was squeezing the base and below the glans of the penis while erect. doing penis exercises. I was fine a month after the incident.

Got a doppler ultra sound 3 years ago after the incident (about 6 to 8 months after the incident). conformed a small but soft scar tissue on the base of the left side of penis. no venous leakage at the time. DR prescribed VED, cialis, pentox, and an extender device.

Hard flaccid came after.

I'm thinking tight muscles pelvic floor could be the issue due to the constant pulling of the extender device on my pelvic floor. Since the scar tissue was small and still malleable - not calcified it was very suspect to think that was causing the ED.

I started Physical Therapy about 3 months ago - first week I got rock hard all week long no pills.

Slow decline since starting 3 months ago then and now i'm having trouble. even with cialis 5mg.

3 years ago they said it was not venous leak - (I've since followed the dr. orders to use a VED, cialis, Pentox, and a penis extender) so I'm not sure if that was too aggressive an approach. They injected me with some trimex and I had a painful priapism at the time - they had to inject a counter acting drug to get rid of the erection.

I've also had a Pelvic MRI that showed bilateral hydroceles. Nothing else out of the ordinary. that was about 8 months ago.


Looking for a way to solve this. Don't have health insurance. I'm in CA. Any advice?

wolfpacker
Posts: 944
Joined: Thu Dec 12, 2013 10:16 pm

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby wolfpacker » Wed Sep 02, 2020 12:46 pm

If pills don't work satisfactorily for you, the next step is typically trying injections (if those work for your lifestyle) or getting the inflatable penile implant installed. Lots of guys on here report success with both.
Early 30s with ED for years from penis enlargement stretching and jelqing. Implant by Dr Eid on 24 June 2021 with a Titan 24cm with +1cm RTE on one side and -1cm cut off on the other side

My journal: viewtopic.php?t=17202

CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Wed Sep 02, 2020 12:50 pm

wolfpacker wrote:If pills don't work satisfactorily for you, the next step is typically trying injections (if those work for your lifestyle) or getting the inflatable penile implant installed. Lots of guys on here report success with both.


Seems pretty extreme - I was having success with pelvic floor therapy in the beginning. Lasted a week.

Anyone here have experience with Hard Flaccid?

Fed1981
Posts: 17
Joined: Sat Aug 01, 2020 4:51 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby Fed1981 » Wed Sep 02, 2020 1:51 pm

CuriousAboutED wrote:
wolfpacker wrote:If pills don't work satisfactorily for you, the next step is typically trying injections (if those work for your lifestyle) or getting the inflatable penile implant installed. Lots of guys on here report success with both.


Seems pretty extreme - I was having success with pelvic floor therapy in the beginning. Lasted a week.

Anyone here have experience with Hard Flaccid?


How long were you using the VED for and how exactly were you using it (i.e. what protocol)?

I am 28 years old and was prescribed VED by a Consultant this year for what he thought was some narrowing at the base; he wanted me to use the VED to try and stretch this out. I had normal erectile function prior to the VED use and after only using it a short while, I now have severe erectile dysfunction and am probably heading toward an implant according to my urologist. It could well be related to the VED use in your case?
28-year-old with intermittent psychological Erectile Dysfunction?
Normal stimulated USS and MRI mid-2020
Working with pelvic floor physio since Sept 2020 and seeing good improvements - ?CPPS/hard-flaccid as cause

CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Wed Sep 02, 2020 2:13 pm

Fed1981 wrote:
CuriousAboutED wrote:
wolfpacker wrote:If pills don't work satisfactorily for you, the next step is typically trying injections (if those work for your lifestyle) or getting the inflatable penile implant installed. Lots of guys on here report success with both.


Seems pretty extreme - I was having success with pelvic floor therapy in the beginning. Lasted a week.

Anyone here have experience with Hard Flaccid?


How long were you using the VED for and how exactly were you using it (i.e. what protocol)?

I am 28 years old and was prescribed VED by a Consultant this year for what he thought was some narrowing at the base; he wanted me to use the VED to try and stretch this out. I had normal erectile function prior to the VED use and after only using it a short while, I now have severe erectile dysfunction and am probably heading toward an implant according to my urologist. It could well be related to the VED use in your case?


It could be. I pumped to max erection. I gained back my lost girth in my base - from 4.8 to 5.2, and actually gained some length from 6.75 to 7.5. So it looks like what ever I did worked to gain size back. As far as erectile health, not sure what happened.

Have you had any tests done? MRI, doppler, etc.?

CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Wed Sep 02, 2020 2:21 pm

CuriousAboutED wrote:
Fed1981 wrote:
CuriousAboutED wrote:
Seems pretty extreme - I was having success with pelvic floor therapy in the beginning. Lasted a week.

Anyone here have experience with Hard Flaccid?


How long were you using the VED for and how exactly were you using it (i.e. what protocol)?

I am 28 years old and was prescribed VED by a Consultant this year for what he thought was some narrowing at the base; he wanted me to use the VED to try and stretch this out. I had normal erectile function prior to the VED use and after only using it a short while, I now have severe erectile dysfunction and am probably heading toward an implant according to my urologist. It could well be related to the VED use in your case?


It could be. I pumped to max erection. I gained back my lost girth in my base - from 4.8 to 5.2, and actually gained some length from 6.75 to 7.5. So it looks like what ever I did worked to gain size back. As far as erectile health, not sure what happened.

I know that I have some degree of "hard flaccid" - seems like no one knows what that is. I know that the pump made the pelvic problems much much worse. HF is basically a rubbery penis in its flaccid state, ED, enlarged veins, position dependent erections, loss of morning wood, no glans inflation, and very tight muscles, usually over the whole body, but especially in the pelvic region, pelvic pain (not always but usually).

I'm not sure if I have both HF AND venous leak, or if the Venous leak caused the pelvic dysfunction (over extending pelvic muscles to compensate for the loss of blood). What ever it is, I've heard HF is treatable, and venous leak is usually not (i've read Testosterone therapy can help if your T levels are low).

Have you had any tests done? MRI, doppler, etc.?

Fed1981
Posts: 17
Joined: Sat Aug 01, 2020 4:51 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby Fed1981 » Wed Sep 02, 2020 3:50 pm

CuriousAboutED wrote:
Fed1981 wrote:
CuriousAboutED wrote:
Seems pretty extreme - I was having success with pelvic floor therapy in the beginning. Lasted a week.

Anyone here have experience with Hard Flaccid?


How long were you using the VED for and how exactly were you using it (i.e. what protocol)?

I am 28 years old and was prescribed VED by a Consultant this year for what he thought was some narrowing at the base; he wanted me to use the VED to try and stretch this out. I had normal erectile function prior to the VED use and after only using it a short while, I now have severe erectile dysfunction and am probably heading toward an implant according to my urologist. It could well be related to the VED use in your case?


It could be. I pumped to max erection. I gained back my lost girth in my base - from 4.8 to 5.2, and actually gained some length from 6.75 to 7.5. So it looks like what ever I did worked to gain size back. As far as erectile health, not sure what happened.

Have you had any tests done? MRI, doppler, etc.?


Yeah I was advised to pump to max tolerated erection too. Same in my case - not sure how my erectile health disappeared like that.

I have had doppler and MRI. Neither demonstrated any fibrosis. My arterial flow (PSV) on the doppler was good and although I didn't get full rigidity (I was probably a 3 on their erection grading scale which = enough for penetration but not fully rigid), they said there was reversal of flow in diastole which excluded venous leak. So I am currently at a loss as to what is happening.

I have a lot of symptoms that are in keeping with hard flaccid however I'm not even sure it is a real thing - nevertheless it does seem to be getting more attention even in medical journals. So therefore I am waiting to see a pelvic floor specialist to see if that helps with the symptoms at all. All a mystery to me but the most important thing is that I can't get proper erectile function!

What do you think?
28-year-old with intermittent psychological Erectile Dysfunction?
Normal stimulated USS and MRI mid-2020
Working with pelvic floor physio since Sept 2020 and seeing good improvements - ?CPPS/hard-flaccid as cause

CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Wed Sep 02, 2020 4:34 pm

Fed1981 wrote:
CuriousAboutED wrote:
Fed1981 wrote:
How long were you using the VED for and how exactly were you using it (i.e. what protocol)?

I am 28 years old and was prescribed VED by a Consultant this year for what he thought was some narrowing at the base; he wanted me to use the VED to try and stretch this out. I had normal erectile function prior to the VED use and after only using it a short while, I now have severe erectile dysfunction and am probably heading toward an implant according to my urologist. It could well be related to the VED use in your case?


It could be. I pumped to max erection. I gained back my lost girth in my base - from 4.8 to 5.2, and actually gained some length from 6.75 to 7.5. So it looks like what ever I did worked to gain size back. As far as erectile health, not sure what happened.

Have you had any tests done? MRI, doppler, etc.?


Yeah I was advised to pump to max tolerated erection too. Same in my case - not sure how my erectile health disappeared like that.

I have had doppler and MRI. Neither demonstrated any fibrosis. My arterial flow (PSV) on the doppler was good and although I didn't get full rigidity (I was probably a 3 on their erection grading scale which = enough for penetration but not fully rigid), they said there was reversal of flow in diastole which excluded venous leak. So I am currently at a loss as to what is happening.

I have a lot of symptoms that are in keeping with hard flaccid however I'm not even sure it is a real thing - nevertheless it does seem to be getting more attention even in medical journals. So therefore I am waiting to see a pelvic floor specialist to see if that helps with the symptoms at all. All a mystery to me but the most important thing is that I can't get proper erectile function!

What do you think?


Oh man. Hard flaccid is 100% real and common. Can you list ALL your symptoms? right now I know 100% I have hard flaccid, but i'm about 50% sure I also have a venous leak as well.

Fed1981
Posts: 17
Joined: Sat Aug 01, 2020 4:51 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby Fed1981 » Thu Sep 03, 2020 10:06 am

CuriousAboutED wrote:
Fed1981 wrote:
CuriousAboutED wrote:
It could be. I pumped to max erection. I gained back my lost girth in my base - from 4.8 to 5.2, and actually gained some length from 6.75 to 7.5. So it looks like what ever I did worked to gain size back. As far as erectile health, not sure what happened.

Have you had any tests done? MRI, doppler, etc.?


Yeah I was advised to pump to max tolerated erection too. Same in my case - not sure how my erectile health disappeared like that.

I have had doppler and MRI. Neither demonstrated any fibrosis. My arterial flow (PSV) on the doppler was good and although I didn't get full rigidity (I was probably a 3 on their erection grading scale which = enough for penetration but not fully rigid), they said there was reversal of flow in diastole which excluded venous leak. So I am currently at a loss as to what is happening.

I have a lot of symptoms that are in keeping with hard flaccid however I'm not even sure it is a real thing - nevertheless it does seem to be getting more attention even in medical journals. So therefore I am waiting to see a pelvic floor specialist to see if that helps with the symptoms at all. All a mystery to me but the most important thing is that I can't get proper erectile function!

What do you think?


Oh man. Hard flaccid is 100% real and common. Can you list ALL your symptoms? right now I know 100% I have hard flaccid, but i'm about 50% sure I also have a venous leak as well.


Ok, hard flaccid is definitely real because I cannot tell you the craziness I have witnessed in the past 48 hours.

So my symptoms were barn door hard flaccid:
- no nocturnal/morning erections
- took loads and loads of stimulation to even get any sort of erection and even then it was a very spongy/weak erection
- immediately lost erection without manual stimulation in a matter of seconds
- when flaccid my penis felt hard and rubbery and was always shrunken up
- premature ejaculation (I have always had the opposite in that it used to take me quite long to ejaculate)
- tightness in my anus + some sharp pains now and then in the perineum

Basically, since using the pump around 4 months ago I noticed my erections getting worse. Subsequently, they only got worse and worse until the past month in which I had struggled to get an erection at all (with girlfriend or alone). I was convinced I had permanently damaged myself with the pump and resigned myself to injections or an implant. I saw several urologists who all had no ideas. I had an USS doppler and MRI which couldn't identify any physical problem. I was beside myself because despite all that I still couldn't function at all sexually. This led to anxiety and low-mood + immense amounts of stress which likely only exacerbated the issue and trapped me in a vicious cycle.

A few nights ago, I sat down and tried to calmly think this all through. If I had damaged myself with the pump wouldn't I have had pain, bruising, petechiae, oedema or at least some physical sign to support this (I never had any of those things)? If the urologists all say they can't find any physical problem then I should believe them - they were all specialists in andrology after all. If my USS doppler and MRI were reported as normal, I should also put faith in that. Therefore, I decided to focus on addressing pelvic floor and hard flaccid as the problem. Further credence for hard flaccid as my issue is the fact that I have mild spasticity and tightness in my lower limb muscles anyway due to what the neurologists think was a mild lumbar spinal cord ischaemia during an operation to fix a whole in my heart at the age of 1 (likely a clot embolised from the heard through the spinal artery). It is minor but nevertheless I know I am predisposed to muscle spasms and tightness in my lower limbs.

I did lots of research on hard flaccid and was surprised how the description of onset, symptoms, triggers were all almost identical to my situation. I watched some videos regarding exercises to relax the pelvic floor and I started doing these about three days ago:
- cat-camel pose
- child's pose
- pose (don't know what it's called) lying on back with legs raised and apart, knees pulled toward chest and breathing down into pelvic floor
- did all the above with abdominal/diaphragmatic breathing several times a day and also tried to abdominal breathe whenever I could during the day
- also tried to reduce my stress and got some diazepam for anxiety

This sounds too good to be true but I swear that after months of poor erections (and a month most recently of no erections and absolute despair), for the past 24-48 hours I have had on demand erections just as before. Just kissing my girlfriend gives me a perfectly normal erection that will last for a long time even without stimulation. There is no sponginess or softness; it is exactly as hard and the same size as I remember it. I can now have sex for a long time without the premature ejaculation rearing its head. My flaccid also feels back to normal. I couldn't believe this myself but I am a firm believer in hard flaccid and pelvic floor dysfunction now; I think that unfortunately there are many men desperately running from urologist to urologist and being made to feel crazy about their symptoms. No matter how many scans you have, a diagnosis of hard flaccid/pelvic floor dysfunction will not be made. Furthermore, the urology community has only started to recognise this as an entity in the past few years and this is just a select few. It will take many years for an overhaul to happen in which urologists recognise this across the board. Therefore, whilst I'm not blaming urologists, I think it is optimistic to believe they will be able to help you. Of course it is useful to see a urologist to have USS doppler and MRI to reassure yourself that there is no physical problem.

Now I can be reassured there is no severe physical problem as it would be impossible for me to have had erections as I have in the past 48 hours if there were. It seems that the VED caused some initial trauma/trigger to be set off in my neurovascular bundle/pelvic floor which was subsequently perpetuated and maintained by my stress, anxiety and despair - I honestly felt like my life was over and I am a 28-year-old high-functioning Doctor normally. What I mean to say is that you shouldn't feel like you're going crazy - I come from a medical background and many times couldn't explain what was happening and admittedly felt like I was crazy at some points because urologists repeatedly told me there was nothing physical wrong despite all the symptoms I report above.

I just wanted to write this to give some hope and reassurance to those suffering with similar problems. I know how lonely, desperate and worthless this can make you feel. It can make you feel less of a man and even start to lose who you are as a person. Suddenly the world seems a harsh place and things that made you feel safe and happy become grey. Clearly I'm not saying this will work for everyone, and of course (as with all things) there will be some who truly do have pathology within the penis that needs to be addressed (that isn't to say it can't be rectified); however, there may be many men like me with pelvic floor problems/hard flaccid who can truly turn things around with the right mental state and exercises. I hope this can help some people and provide some peace of mind - good luck to everyone and stay strong - you can definitely make improvements no matter your situation! There are always options and a light at the end of the tunnel
28-year-old with intermittent psychological Erectile Dysfunction?
Normal stimulated USS and MRI mid-2020
Working with pelvic floor physio since Sept 2020 and seeing good improvements - ?CPPS/hard-flaccid as cause

CuriousAboutED
Posts: 13
Joined: Wed Sep 02, 2020 1:53 am

Re: 30 w ed for 3 years from Penis Extender / Pumping

Postby CuriousAboutED » Thu Sep 03, 2020 12:51 pm

Fed1981 wrote:
CuriousAboutED wrote:
Fed1981 wrote:
Yeah I was advised to pump to max tolerated erection too. Same in my case - not sure how my erectile health disappeared like that.

I have had doppler and MRI. Neither demonstrated any fibrosis. My arterial flow (PSV) on the doppler was good and although I didn't get full rigidity (I was probably a 3 on their erection grading scale which = enough for penetration but not fully rigid), they said there was reversal of flow in diastole which excluded venous leak. So I am currently at a loss as to what is happening.

I have a lot of symptoms that are in keeping with hard flaccid however I'm not even sure it is a real thing - nevertheless it does seem to be getting more attention even in medical journals. So therefore I am waiting to see a pelvic floor specialist to see if that helps with the symptoms at all. All a mystery to me but the most important thing is that I can't get proper erectile function!

What do you think?


Oh man. Hard flaccid is 100% real and common. Can you list ALL your symptoms? right now I know 100% I have hard flaccid, but i'm about 50% sure I also have a venous leak as well.


Ok, hard flaccid is definitely real because I cannot tell you the craziness I have witnessed in the past 48 hours.

So my symptoms were barn door hard flaccid:
- no nocturnal/morning erections
- took loads and loads of stimulation to even get any sort of erection and even then it was a very spongy/weak erection
- immediately lost erection without manual stimulation in a matter of seconds
- when flaccid my penis felt hard and rubbery and was always shrunken up
- premature ejaculation (I have always had the opposite in that it used to take me quite long to ejaculate)
- tightness in my anus + some sharp pains now and then in the perineum

Basically, since using the pump around 4 months ago I noticed my erections getting worse. Subsequently, they only got worse and worse until the past month in which I had struggled to get an erection at all (with girlfriend or alone). I was convinced I had permanently damaged myself with the pump and resigned myself to injections or an implant. I saw several urologists who all had no ideas. I had an USS doppler and MRI which couldn't identify any physical problem. I was beside myself because despite all that I still couldn't function at all sexually. This led to anxiety and low-mood + immense amounts of stress which likely only exacerbated the issue and trapped me in a vicious cycle.

A few nights ago, I sat down and tried to calmly think this all through. If I had damaged myself with the pump wouldn't I have had pain, bruising, petechiae, oedema or at least some physical sign to support this (I never had any of those things)? If the urologists all say they can't find any physical problem then I should believe them - they were all specialists in andrology after all. If my USS doppler and MRI were reported as normal, I should also put faith in that. Therefore, I decided to focus on addressing pelvic floor and hard flaccid as the problem. Further credence for hard flaccid as my issue is the fact that I have mild spasticity and tightness in my lower limb muscles anyway due to what the neurologists think was a mild lumbar spinal cord ischaemia during an operation to fix a whole in my heart at the age of 1 (likely a clot embolised from the heard through the spinal artery). It is minor but nevertheless I know I am predisposed to muscle spasms and tightness in my lower limbs.

I did lots of research on hard flaccid and was surprised how the description of onset, symptoms, triggers were all almost identical to my situation. I watched some videos regarding exercises to relax the pelvic floor and I started doing these about three days ago:
- cat-camel pose
- child's pose
- pose (don't know what it's called) lying on back with legs raised and apart, knees pulled toward chest and breathing down into pelvic floor
- did all the above with abdominal/diaphragmatic breathing several times a day and also tried to abdominal breathe whenever I could during the day
- also tried to reduce my stress and got some diazepam for anxiety

This sounds too good to be true but I swear that after months of poor erections (and a month most recently of no erections and absolute despair), for the past 24-48 hours I have had on demand erections just as before. Just kissing my girlfriend gives me a perfectly normal erection that will last for a long time even without stimulation. There is no sponginess or softness; it is exactly as hard and the same size as I remember it. I can now have sex for a long time without the premature ejaculation rearing its head. My flaccid also feels back to normal. I couldn't believe this myself but I am a firm believer in hard flaccid and pelvic floor dysfunction now; I think that unfortunately there are many men desperately running from urologist to urologist and being made to feel crazy about their symptoms. No matter how many scans you have, a diagnosis of hard flaccid/pelvic floor dysfunction will not be made. Furthermore, the urology community has only started to recognise this as an entity in the past few years and this is just a select few. It will take many years for an overhaul to happen in which urologists recognise this across the board. Therefore, whilst I'm not blaming urologists, I think it is optimistic to believe they will be able to help you. Of course it is useful to see a urologist to have USS doppler and MRI to reassure yourself that there is no physical problem.

Now I can be reassured there is no severe physical problem as it would be impossible for me to have had erections as I have in the past 48 hours if there were. It seems that the VED caused some initial trauma/trigger to be set off in my neurovascular bundle/pelvic floor which was subsequently perpetuated and maintained by my stress, anxiety and despair - I honestly felt like my life was over and I am a 28-year-old high-functioning Doctor normally. What I mean to say is that you shouldn't feel like you're going crazy - I come from a medical background and many times couldn't explain what was happening and admittedly felt like I was crazy at some points because urologists repeatedly told me there was nothing physical wrong despite all the symptoms I report above.

I just wanted to write this to give some hope and reassurance to those suffering with similar problems. I know how lonely, desperate and worthless this can make you feel. It can make you feel less of a man and even start to lose who you are as a person. Suddenly the world seems a harsh place and things that made you feel safe and happy become grey. Clearly I'm not saying this will work for everyone, and of course (as with all things) there will be some who truly do have pathology within the penis that needs to be addressed (that isn't to say it can't be rectified); however, there may be many men like me with pelvic floor problems/hard flaccid who can truly turn things around with the right mental state and exercises. I hope this can help some people and provide some peace of mind - good luck to everyone and stay strong - you can definitely make improvements no matter your situation! There are always options and a light at the end of the tunnel


You need to continue to address the issue. It’s not going to go away on its own. It will come back. You need to strengthen and lengthen muscles in your pelvic floor and muscles related to the PF. Just because you can get erectjons now doesn’t mean you shouldn’t be working on it. Because it comes back if you don’t.

Now I’m hoping mine is just hard flaccid as well but i have a strong feeling i have hard flaccid AND venous leakage. I think i stretched my tunica or something causing the veins to not be properly shut off.

I’m seeing lots of surface veins (blue) in color that leads me to believe these veins are taking blood out of the penis. These are newly visible veins within the last 3 years. I guess we’ll see what happens.


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