Severe ED and numbness

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sonnyjim

Hi guys,

How is scar tissue that affects sensation and prevents ejaculation dealt with? I mean, I know penile implants deal with ED, but they wouldn't bring back sensation would they ?

I am struggling to stay positive and believe that my situation can actually be helped due to hard scar tissue like a ring that causes all of these problems (Ed, soft glans, lack of blood flow to glans, numbness, cannot ejaculate)

I've tried everything everyone has suggested here and had no improvement so far.

Can this be solved and has anyone else had these symptoms ? Also, the lack of blood flow after the scar tissue has caused white spots on the glans :(
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

The numbness is caused by the lack of blood to the penis. Less blood and especially in the glans (soft glans) will cause this lack of sensation

Hawk

Or loss of sensation is caused by impingement on a nerve, or it is psychosomatic from stress over Peyronies Disease and ED.

If it is truly caused by plaque (which I doubt) then getting rid of the plaque without damaging the nerves is the only solution and I think Xiaflex is the only thing with a decent chance and succeeding.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Shouldn't the urologists be able to tell me what caused this and how it can be sorted out? I mean, agyer 2+ years they are still referring me to skin doctors telling me the white spots are some sort of skin condition and not actually listening to me.

My scar tissue is basically like a ring like cord, on the bottom of my penis. I don't want to go straight in for an implant like they are suggesting without them addressing the numbness and lack of blood flow to the glans because what good will an implant be if I can't feel anything ?

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

But you will not be able to fix the glans problem, because all those injured with jelqing have it and only some improved it with vein closure surgery

Hawk

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Quote from: suicidecomingsoon on January 01, 2019, 06:12:13 PM
But you will not be able to fix the glans problem, because all those injured with jelqing have it and only some improved it with vein closure surgery

So even if I had an implant it would not fix it ?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

Quote from: sonnyjim on January 01, 2019, 06:25:24 PM
So even if I had an implant it would not fix it ?
No it doesn't, an implant will do nothing for the glans.

It will not do it because the glans problem has to do with the fact that the blood is not kept well since the veins do not close. The corporovenoocclusive system is broken and an implant does not fix that, maybe with much luck it can improve it if it manages to close the veins but I doubt it. Maybe a cock ring plus implant work

sonnyjim

The glans problem never happened straight away it was only about a year after the initial injury when I guess the scar tissue had progressed (I was still having sex when I could feel lumps but they were soft) now at this point, the lumps are rock solid not soft like before.

So basically there is no point in me having an implant if it isn't going to restore sensation or fix soft glans?

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

Great!  You have decided to eliminate that option.  That gets you one step closer to making a decision and jumping into it with both feet even if it is to do nothing, forget about penis issues and move on with your life.  A favorite quote "Often a bad decision is better than indecision"  Bad decisions can often be corrected.  Indecision paralyzes.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

I'm not quite sure what your point is Hawk. I supposedly have a problem that not even surgery can fix so what really are my options ? I'm too young to forget about my penis I'm in my twenties.

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

popopo

Same here, I also decided surgery is not my option because I have similar issues to you. I think Hawk is trying to keep you from becoming desperate and either choose something to fix the issue or accept that there is no fix. Easier said than done, though.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Pfract

Here we are again Sonny. I knew it wouldn't take long for you to post something that shows you do not read anything about your condition and keep repeating yourself. Why do you do this?  

sonnyjim

I do read, I read all day long, every day. It's still hard to believe there is nothing that can be done about something like this when there are surgeries for things that are more complex than this being done.

What would you suggest pfract? Just don't post anything at all, just accept that I am screwed? I don't understand.

Somebody with similar problems must of got it sorted out and I just want to hear from them.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

Quote from: sonnyjim on January 02, 2019, 06:50:52 PM
I do read, I read all day long, every day. It's still hard to believe there is nothing that can be done about something like this when there are surgeries for things that are more complex than this being done.

What would you suggest pfract? Just don't post anything at all, just accept that I am screwed? I don't understand.

Somebody with similar problems must of got it sorted out and I just want to hear from them.
No one has solved a jelqing injury or erectile dysfunction. If they resolved it was with pills or injections or implant

I repeat noone with this type of injury has been cured in years, only some improved their situation with venous surgery and never were as before. Here you have the answer, choose from all this or wait for something new

Walleye

I would suggest getting on Cialis daily 5mg. My auto told me it's as effective or more than Pentox. It will improve your erections, or it should. Getting blood to places it's being restricted will help.

I would also lose weight if your overweight, have a A1C blood test for diabetes, which can cause numbness and erection issues. I would have a 'total testosterone' blood test also. You might consider a VED (penis pump). Sadly there really isn't a Fix to any of your issues, but there are things to try to have improvement, and prevent worsening.

Stress only makes things worse, so try your best to reduce it. Exercise is a great way for that. Also maybe see a therapist if possible. It sounds like you need to try and start accepting the permanence of this, which will help you manage things better, and help you focus on learning and doing what you should be doing.

Ask your Dr for a referral to a Eurologist who specializes in Male sex health. These are the 'experts' who should know what's going on, and be able to get you the treatments you need. Considering an implant in the way you are, without knowing much more, shows your likely in the 'Bargaining' stage of acceptance. Your looking for a quick one shot solution. We've all been there, so your not alone.

You may be reading all day and night, but your likely reading things just interested in finding out the 'fix'. Start with the basics and learn what and how peyronies is, and how it all works. By doing so you'll not only understand everything better, and reduce your stress, but you will understand what your options are, along the way.  

Pfract

No need to suggest anything because Mr Sonnyjim there follows on advice, and the only thing he wants to do is create a few bogus threads when he is feeling down, but has no real intention of solving his problem.

I wouldn't bother.  

sonnyjim

Bogus threads?

Who are you to say I'm making bogus threads? You don't even know me.

What would I gain from making bogus threads? You seem to forget we're all in the same boat here... So F^@$!ng help me rather than try and belittle me.

My problem is probably worse than yours. I have no curvature just severe ED. I mean, it cannot get worse than it is. But for some reason IT DIDNT SHOW ON ULTRASOUND.

So these hard lumps I can feel, do not exist according to these useless idiot urologists. They give me different explanations every time. Oh, it could be a vein. Oh, its this and that.

This is my problem. Trying to get my head around the fact that the ultrasound I had two years ago didn't show anything. I have to prove I have a problem before they can treat it. Even though I failed the NPT.  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

You don't seem to understand what it is I am saying. So I will explain.

I DO NOT KNOW WHAT IS WRONG.
UROLOGISTS DONT KNOW WHAT IS WRONG.

All I know is I have two options offered to me: injections or an implant. Problem with both is that they aren't understanding that I have literally NO sensation, I cannot ejaculate. The scar tissue stops my penis from expanding. What is the point in having an implant without having feeling and being able to cum?

But they won't give me another FREE ultrasound because the first one showed nothing. This was two years ago. Problems have worsened since then and the areas are harder. Is it not possible that after all of this time I am right?

Why would I have pain without an injury?
Why is there hard lumps if they aren't scar tissue? Wtd are they then? This is why I want another ultrasound. Maybe they can remove the scar tissue AND then give me an implant. So I at least can ejaculate.

Do you understand?

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

popopo

I have the same problem. Urologists can feel the scar tissue with their hands and it's clearly visible, but the ultrasound doesn't really show anything other than a "leak" but they tell me that's probably from "pelvic floor tension". On my latest visit the doctor actually admitted that what I was pointing out to him is in fact caused by scar tissue, but they can't do anything about it. The message I seem to get time and time again, is that no matter what my penis looks like and if it functions or not, I should still be happy. And because I'm not I get the label "body dysmorphic disorder". To them my broken dick isn't the problem, cause I could still contribute to society if I was psychologically more strong. I'm 100 percent sure the real reason I get this diagnosis is because it's the easy way. They rather tell me everthing is fine and try damn hard to make me believe that, than confirm my anxieties by telling me something is physically wrong, simply because if it is physical, there still wouldn't be a way to fix it. I'm still mad about the misdiagnosis, but my way of dealing with this is to accept it for now and wait for a day they could actually heal the damaged tissues inside my penis. I'm sure if there's a doctor who can do that he'll find the physical abnormalities and treat them. When such a treatment exists there is a market for it. Money to be made. But right now, the "treatment" they can offer me is psychological help, nothing else. I even tried it many times, but I can't deal with being impotent and never will. I hope you can stay patient like me and get the help you deserve one day. Just know you're not the only one walking around with a butchered penis that's supposedly "just fine". I believe you, cause I can't believe someone would obsess about something that's not real. It's not "in your head" it's just easier to dismiss your worries then to confirm your anxieties. That's just my own experience, though and might not apply to everyone. I know people with genuine body dismorphia and it does exist, but it's overdiagnosed for sure.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

DELETED

Quote from: popopo on January 20, 2019, 04:58:21 PM
I know people with genuine body dismorphia and it does exist, but it's overdiagnosed for sure.

This is exists only because some issues cannot be fixed, at least at present time. If someone's height is statistically shorter than average or if someone have smaller than average penis it's just a "body dysmorphia". You know why? Because those issues can't be fixed. So the only way is to say "your problem just in your mind, you have body dysmorphia".

sonnyjim

Thanks for your reply popopo.

I am glad somebody can relate because I feel like I'm banging my head on a brick wall trying to explain myself to urologists and people on here about why I am not taking their advice.

I am taking their advice but the fact is, an ultrasound is actually a useless test if they can't see lumps that are more than 1cm long and thick enough to easily feel. I don't understand why ultrasound is the "gold standard" for diagnosing this type of problem if it is basically useless...

They can't even answer basic questions like will this progress? More shrinkage? I mean the ED can't get worse but I could end up with less size if it keeps getting worse...

Even an implant seems like a lucky dip with the best outcome being you will keep your current size. Could lose another inch and end up below average when I was above average to begin with :S

Traction, ved, Pentox, coq10, Cialis, Viagra all useless.

But they can put arteries in if they aren't working properly. Confusing how something as simple as a small piece of damaged tissue cannot be saved but they can put arteries in and even reattach your cock of it gets blown off in the war.

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

Again.... A lot of half truths over there.... You need help man. And you need to listen to people more. Want to chat through Skype? Or talk by voice anonymously?

Bubba dawg

Ultra sounds are not all that reliable. I know someone who was diagnosed with a problem that didn't exist. The ultra sound led to a cat scan. The cat scan did not show the problem.
If you have loss of sensitivity and/or Erectile Dysfunction. This could be your problem. Different from Pelvic floor problems:

https://www.niddk.nih.gov/health-information/urologic-diseases/perineal-injury-males:

"Sexual problems. The perineal nerves also carry signals between the genitals and the brain. Injury to those nerves can interfere with the sensations of sexual contact.

Signals from the brain direct the smooth muscles in the genitals to relax, causing greater blood flow into the penis. In men, damaged blood vessels can cause erectile dysfunction (Erectile Dysfunction), the inability to achieve or maintain an erection firm enough for sexual intercourse. An internal portion of the penis runs through the perineum and contains a section of the urethra. As a result, damage to the perineum may also injure the penis and urethra."
5 Rounds of Xiaflex. Good results.

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