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sonnyjim

Doppler was normal apparently and nothing was shown on the mri

This I cannot understand plus when the urologist felt my penis for lumps he said he could not feel anything even though I can feel it, it's like a thin line. So basically i have been told its all in my head, I tried to argue my point but it was all just hopeless.

Also, the injections didn't work both times but apparently that happens a lot in younger guys (ok :S)

Why would it not show up on either test?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

Quote from: sonnyjim on November 30, 2017, 02:11:01 PM
Also, the injections didn't work both times but apparently that happens a lot in younger guys (ok :S)
What a joke, that is a lie, it is the opposite, if even the oldest people get an erection with that ... It is the second treatment for ED after the pills and it works in many people, if it does not produce an erection you will tell me what you are going to use it for ..Doctors try to calm you down because they know that after injections there is only the option of the implant

DN

Dude, get ahold of some caverject or trimix. Try it out a few times and see if you can get fully erect. There are ample instruction online on how to administer it. If you can't get fully erect on those then the way forward is absolutely clear... Honestly, if I were in your situation I would have the decision made within a week of getting the caverject/trimix. If you don't have money for an implant well looks like you've got some saving to do! Review the FT forum, besides the money many people are happy/satisfied with their implants.

sonnyjim

How can i get an implant when I can't even get a diagnosis though?

Why wouldn't scar tissue show on an ultrasound or an mri it really doesn't make sense to me.

Feels like I have no hope of getting better now...
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

james1947

Proposing you to send an email to Dr. Kuehhas.
Modified: Ask Jonbinspain for his email
He is in London from time to time and I am sure you can have an appointment with him
I am also sure he can help you to understand your situation

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

suicidecomingsoon

Save money save everything you can while trying to get doctors to find out what is wrong with you

And yes maybe Kuehas could help you if he has heard something about jelqing injuries before, if he has not heard it, it will be harder, because most doctors do not know almost anything about it, but he seems like a good doctor. Maybe he has some experience with this I do not know





DN

From what I have learned it seems implant surgeons, those in which implants are one of their primary procedures/treatments, know how to get a patient cleared for it. If you can't get an erection with an injection an implant surgeon, I'm sure, would implant you easily. If it is true what you say that you can't get an erection with injection, try it yourself a few times, then if an implant surgeon observed that he/she would implant you. Now getting that paid for is a whole other story. Here in the US an implant surgeon will essentially implant anyone who has ED, but getting it paid for by insurance is the issue. If you go to a UK surgeon and he agrees that yeah you can't get an erection then he may know the right administrative approach to move forward. If you want an implant in the US you'll just tell the surgeon that you have been experiencing ED and you can't get hard with pills (he actually probably won't care about the injections, it seems many implant surgeons feel it is a personal decision to how you want to treat your ED).

Basically:

get in front of a high-volume UK implant surgeon and show them that you can't get fully erect with an injection and see if they will work with you

if they won't

pay the cost of implantation in the US

I guess for your hope of getting better I have a few questions:

How long have you been experiencing ED?
Have pills ever worked for you?
When did they stop working for you?
What dosages of Cialis/Viagra have you tried?
Are you able to get a full erection when you masturbate?

If the answers are something like:
>1 year
yes or no
>1 ago
20-40 mg C and 100 mg V
No, not for ~1 year

Then my understanding is that you may be facing permanent severe ED.

sonnyjim



How can a urologist tell me 100% that I do not have Peyronies even though I can feel lumps that they can't. It is strange to me.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

They can't 100%. No test is perfect.

Did you have an erection for your MRI scan?

popopo

They said the same to me and I know I lost size and function as well.. you shouldn't take their word for it. More and more I'm starting to see that doctors canvery well make mistakes over and over again. Dr 1 says scar tissue (but minimal) second says so too (but it's NOT peyronoes somehow) the third sees nothing and the fourth says it's a minimal venous leak caused by pelvic muscle tension. Well.. those stupid pelvic floor 3xercises havent work3d, so I guess that's not it either ans my gut feeling seems actually.more qccurate than these quack tests.
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

lessor

Dont trust in most urologists because most of them know less than what you can know by informing and reading online. Many urologists are worthless and as they see you are young ... dont take you seriously

PeetyPeet

I second what lessor and Popopo have said. It's not all urologist, but many.

I think the problems we experience with urologists have their roots in a more fundamental problem: Urologists are the wrong type of doctors to be dealing with conditions of male sexual dysfunction.

male sexual function is determined by the endocrine system (hormones), the autonomic nervous system (nerves, signal pathways, fight or flight reactions) and the vascular system (blood flow). Are men suffering male sexual dysfunction seen by endocrinologists, or neurologists or vascular surgeons? No, they're not. Just because you happen to piss through the penis, it is the territory of urologists. It's baffling to me.

In more recent years we're starting to see professionals with titles like 'andro-urologist'. These are urologists who have more expertise in male sexual dysfunction (as well as fertility) than others. It's better than nothing, but that these professionals exist at all it highlights the inadequacy of your typical urologist to deal with sexual dysfunction.

I think it's about time we have professionals dedicated solely to sexual dysfunction.  

sonnyjim

I can't go on like this, I know that.

I have lost everything that was important to me and still, after everything I try, I am just watching it get worse and worse.

Who wants to live like this? 29 years old and can't even get an erection spending thousands of pounds on ED drugs, supplements, diet, walking around and can't even feel your dick anymore. Can't masturbate and most certainly can't keep a woman happy like this, what a F~
I really have had enough of this crappy  miserable life.

Who is ever going to love me now.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

If you can not continue like this, and nothing works, go for a implant guy..
I am starting to consider it too

james1947

Quotecertainly can't keep a woman happy like this
What about implant? You will be able to make her happy as long as she wishes 8)

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

sonnyjim

I can't even get a diagnosis let alone an implant.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

lessor

Look for a good urologist ( better andrologist) who doesnt tell you your ED its in your head only because you r young. If you say them you dont get an erection with pills and even with injections obviously your ED its important and obviously they should give you the option of the implant.

PeetyPeet

Alas, in going to UCLH Sonnyjim has already been to one of the best urological clinics in the UK.

In the UK at least, not responding to Caverject or PDE5 inhibitors is not enough to get a diagnosis of organic ED. Particularly as a younger man, one needs to meet very specific criteria:

1. fibrosis or wasting on an mri scan
2. fibrosis on an ultrasound (usually peyronies)
3. Poor blood inflow / outflow on an ultrasound
4. a diagnosis of diabetes
5. an endocrine disorder such as hypogonadism
6. a history of surgery that is likely to affect erectile function, such as a radical prostatectomy.
7. failing the Nocturnal Penile Tumescence test....which is pretty hard to fail as they set the bar for normal pretty low.

If you don't 'fit' with this image the (sweeping) assumption is that your ED is psychological.


TonySa

Wow, sounds like straight up gate-keeping...refuse treatment (preventing financial impact to the system) at all cost.  ☹️
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

PeetyPeet

Yes, that's exactly what's happening. It's common throughout the NHS, for many medical conditions. Obvious examples are people refused treatments for terminal illnesses because potential benefits are not considered sufficient justification for the cost.

However, with ED you have the additional psychological dynamic. So rather than being told 'we can't find anything to justify treating you', you are told 'it's all in your head', even without any psychological assessment. It is not a scientific approach and it assigns blame to the patient, which is, ironically, likely to give the patient a psychological problem.

If a patient with ED didn't have a psychological problem when they walked into a urologist's office, they could well do once they've walked out.

sonnyjim

So what are my options if even UCLH can't do anything for me?

I can feel the lumps myself I don't know why these "specialists" say they can't feel anything there.

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

TonySa

I'd do a phone or email consult w a high volume implant doc like Dr Eid or others recommended on this forum.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

PeetyPeet

In terms of treatment in the UK you could:

1. Ask the clinic at UCLH if you could take part in the NPT test (who is your consultant by the way, Mr Minhas?, Mr Ralph? someone else?).
2. Ask the clinic to redo the MRI and ultrasounds as you feel they were not performed correctly.
3. Return to your GP and ask to be referred to another urologist. The downside is that you might have to go privately, the upside is that you can pick whoever you like if you go privately. Whoever you see might be at a bit of a loss as to what to do as you have already undergone the best assessments available.
4. Self medicate - buy cialis from an online pharmacy and continue to use VED and traction.

When it comes to the lumps you can feel, bear in mind that when you inspect your penis you are comparing how it is now, to how it was before you developed problems. Alas, any urologist does not have that memory, instead they are seeing if you 'fit' the image of peyronies as per their training and experience. Male Sexual dysfunction is a relatively new area of medical expertise. Their training is probably not sufficient to diagnose many cases.


sonnyjim

I am having the NPT test done in April.

But even if I am diagnosed (when I am, even) what is my best hope? Am implant? More loss of size ?

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

sonnyjim

@PeetyPeet will self medicating and using ved or traction actually help. I.e reduce the scarring ?

I don't have any curvature just very severe erectile dysfunction and loss of size because of that. I am never able to get a full erection like before, even with 150mg Viagra I would have to stimulate myself a lot to get erect and then it would go down if I left it.

Would Cialis and VED/traction help me there?

I have been manually stretching since the very beginning and it hasn't seemed to help me much... (one year), flaccid is still the same and looks like there is hardly any blood flow.

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

PeetyPeet

I would be very interested to hear the results of your NPT test. Our symptoms and journey through the NHS are almost exactly the same.

The standard practice is for patients to use pde5 inhibitors (viagra / cialis) until that doesn't work, then move onto injections, and when that stops working move onto an implant.

It's hard for me to tell you exactly what the future holds as I don't yet know for myself. I can't guarantee that self medication and use of VED will reduce scar tissue. I will say however, that I have been using VED regularly for over a year now, and I have seen no improvement in my symptoms. At the same time the ED doesn't appear to have become worse either. I strongly recommend you continue using VED.

I've never used traction. I'm unsure how effective it is for ED. Bear in mind that many of the users of this forum do not use it primarily for ED, but rather to stretch out the scar tissue on their tunica albuginea. If indeed you do have scar tissue I suspect it is much deeper, in the corpus Cavernosum, than on the TA.


sonnyjim

Why would you say my scar tissue isn't on the tunica ? Is that easier to get rid of?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

I don't think any scar tissue is easy to get rid of, no matter where it is. If it was easy to get rid of, there would be no need for this forum.

Your symptoms do not sound altogether typical of peyronies, in fact they sound a lot like mine, and I do not have peyronies. I can feel a lumpiness, or 'woodiness' in my penis but it is deep inside. Many men with peyronies do not suffer from ED

You say you can feel lumps, do they feel close to the surface or deeper inside your penis?


sonnyjim

They don't feel very close to the surface its actually hard to feel them once erect but then again i don't know, I do think they must be pretty deep as none of these urologists can feel it even when I tell them exactly where they are.

It literally feels like no blood flows into my penis, like I'm walking around without one.

I am taking coq10 and acetyl l carnitine and I was trying dmso iodine and castor oil but none of it has helped at all. I think if things carry on this way I will definitely need an implant which makes me feel gutted because my size before this was not bad and now with an erection I am average so i will lose size again...

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

PeetyPeet

Again, very similar to me. The lumpiness / woodiness that I can feel also cannot be felt once erect.

Based on my own experience and some reading I've done, I believe you have fibrosis and/or atherosclerosis inside the corpus Cavernosum. I don't believe an MRI scan can pick this kind of thing up. The small spaces that fill with blood during erection are just too small to see properly on a scan.

I don't think any topical creams will make a difference if the lumpiness is deep.

You've said in the past that this started with an injury during drunken sex, but I wonder if you are on any medication at all? Are you taking any steroids for asthma or skin conditions?


sonnyjim

I use asthma inhalers... Why?

What is the hope of this improving over time? If I keep taking Cialis and other supplements?

It has been a year now and the lump feels very hard. Can't get pentox prescribed because obviously I have no diagnosis and apparently it's almost inpossible to get it prescribed here anyway :(

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

TonySa

Traction, Coq10, ALC, etc...all should help
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

sonnyjim

Then why aren't they ? Am I worse off than everyone else or something ?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

TonySa

Sorry, I missed you were already taking those.  Has your loss of size stabilized?  Have you considered injections for the ED?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

sonnyjim

I don't actually know as I can rarely get fully erect, now I get weak erections that I can bend. So I am not sure how much size I have lost exactly but I predict it will get worse. My girth is quite a bit less too.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

Quote from: Tsanchez12369 on December 14, 2017, 09:09:49 PM
Sorry, I missed you were already taking those.  Has your loss of size stabilized?  Have you considered injections for the ED?

Sonnyjim does not have access to caverject as he has not been diagnosed with organic ED. He has mentioned earlier that the caverject used for his ultrasound had little effect.

Quote from: sonnyjim on December 14, 2017, 03:43:08 PM
I use asthma inhalers... Why?

What is the hope of this improving over time? If I keep taking Cialis and other supplements?

I believe the medical community underestimate the detrimental effect many 'harmless' steroids can have on the body. I think that some asthma inhalers - but not all - are steroid based. I assume you've been using the same kind of inhaler for years and years? Or have you changed to a stronger type in the past few years? If you let me know the name of the drug I will research it for you.

If you have a physical problem - and I it sounds like you do - I'll be honest, there isn't too much hope of you improving over time. Cialis, supplements, and VED will stop you getting worse, but I can't guarantee any improvement. I used myself as an example of this.

sonnyjim

So realistically what are my options?

I cant see myself living like this.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Jack1909

Waiting, or better, learning  how to wait. I've been waiting for an usable penis for eleven years (16/27 years old). Otherwise get an implant.  
31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

TonySa

Sonny jim, do you have access to treatment for depression...medication?  This condition really takes a toll and many of us need support and MH treatment to get through it.  
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

PeetyPeet

Quote from: Jack1909 on December 15, 2017, 11:35:54 AM
Otherwise get an implant.

As I've said before Sonnyjim is currently not eligible for an implant as he does not have a diagnoses of organic, non-psychological ED.

sonnyjim

Just thinking about an implant now, if i could somehow get one would I lose significant size? I am down to about 6 inches now and don't really want to lose even more.

I doubt there is any other option for me because the lumps on my penis are not getting any smaller and this ED is as bad as I think it can ever get in a person.

This is complete hell.

No libido, no spontaneous erections just a constantly turtled dick. Flaccid size was always about 4.5 inches and now it's barely 3.5 and much less thinner, basically feels totally lifeless.

I've heard about stretching working for people but I have been manually stretching now ever since the pain first started and my size hasn't changed at all.

Any other ideas I can try or is this never likely to improve ?

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

sonnyjim

Starting to lose hope guys, I really am.

Crying myself to sleep every F^@$!ng night wishing I could wake up from this nightmare.

Before this crap happened to me I had a girlfriend, sex was good, life was good and I felt like I actually had a future. Now, I can't even think about sex without dwelling on the fact that I won't be able to satisfy any one the way I could, I actually feel so useless that I feel like the only way out of this is suicide.

My worst nightmares have actually come true, my girlfriend left me, pills don't work, my dick is much smaller than it was with hardly any sensation any more and to top that off, she has gone back to her ex boyfriend: who is, I have heard, better hung than me even before my injury.

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

NeoV

How long have you been trying to heal this? Expect years. How long have you been abstinent? Have you tried heat and regular traction? You cannot have your old penis back, at least not exactly and there will never be a guarantee. You have to stop relying on your penis to feel good about your own self worth which takes serious work. The size of her ex's dick means nothing. You should be excited man, being single is very good, you'll have options and you'll be able to learn how to overcome this crap somehow. Don't worry about whether or not you have scarring or Peyronie's, just take action. Be very gentle with traction and let your penis rest. See a better uro but do not expect him to truly save you. Your penis health can improve, if you are willing to commit to things like resting it, stopping carbs, eating very healthy, and focusing on the bigger picture over years of time.  

sonnyjim

I haven't had a spontaneous erection or morning wood for the best part of a year. I have manually stretched since the pain started. Ive tried viagra, cialis and neither can allow me to have an erection without a lot of manual stimulation and when I stop, it goes down.

MRI and Doppler have both shown nothing, apparently I don't have Peyronies yet I can physically feel that my dick has lumps on the underside.

My flaccid penis is small compared to how it was (4.5 x 4.5) now an inch smaller both length and girth. My erections even with viagra or cialis are actually bendable.

Could Pentox help erectile dysfunction ?

My dick just doesn't feel the way it used to, I never feel like, aroused. It's just permanently turtled, numb.

I don't have much hope left.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

NeoV

Sonny,

how long have you abstained? As in, zero erection checking. Have you abstained to the point of semen leakage? Are you allowing your body to re-learn arousal?

sonnyjim

I've abstained for about 2 weeks at most, nothing really changed.

I don't have any sex drive I basically just feel nothing any more. How long should i abstain for and won't this make my problem worse (if that is possible) use it or lose it?

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

NeoV

Here is a video response I made for you:

https://www.youtube.com/watch?v=IaYpPxjw-1c (fixed the link)

connect with the NoFap community and Yourbrainonporn ASAP, if you need that much porn to get hard!
Also, smoking is DEVASTATING for your penis! If you smoke, you have very little chance of recovering from this disease! ROS is a huge factor in penile inflammation and scarring. The cord may be a vein or a lymphatic vessel.


sonnyjim

Is it possible I don't have peyronies and that it is a vein?

All I know is my dick is permanently turtled and the glans has white spots all over it.

The hard cord is always there, it goes horizontally and it doesn't move. Why would scar tissue not show on mri or ultrasound? I don't get it.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

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

NeoV

Yo, yes it can be a vein, but that doesn't mean you are in the clear. The cord, if it was scar tissue, would likely appear on the ultra sound unless your urologist was an average joe uro. The white spots could be a separate issue such as BXO, or some kind of rare reynaud's type circulation problem, which I doubt.

Feel for a pulse on the cord. Next, take a flash light or camera light from your phone and palpitate the cord with the light on it. Can you see any bluish tint? If so, it's a vein / lymphatic vessel.

Regardless of if you have vascular issues or Peyronie's, penile health is generally tackled the same--reduce insulin in your body (hyperinsulinemia) aka pre-diabetes or insulin resistance, exercise, veggies, and traction/VED plus supplements or drugs. Let us know if you can see the color of that cord!