Very bad situation

[PeetyPeet]

There are some very passionate posts in this thread now, which I'm not sure is necessarily helpful to anyone.


In the absence of answers from medical professionals Sonnyjim has turned to the forum, and then in the absence of consistent advice from the forum -  mixed with a dose of medical inexperience - he has entered somewhat of a 'feedback loop'. This may be frustrating for some readers, but I think it's a natural, understandable behaviour from Sonnyjim. The ultimate antagonists here are the medical pros who sent him on this trajectory in the first place. I have been to the same clinic, seen the same doctors, and undergone the same tests as sonnyjim - the tests, methodology, and attitudes of the doctors are far from perfect. You do feel left out in the ocean without a paddle by the end of it all.

Absence of evidence is not evidence of absence. I think we would all do well to remember that. Suggesting to Sonnyjim what the cause of his ED may be is one thing, but I think telling him 'conclusively' what's wrong, (only to then get frustrated when he doesn't seem to agree) is not helpful. We only have his posts to go on and ultimately we have insufficient evidence conclusively to say one way or the other whether his ED is organic/psychological in nature. Of course, these aren't mutually exclusive events - it could be BOTH organic and psychological. My own personal view - again, purely based on Sonnyjim's posts - is that his ED is primarily organic - the loss of length, lack of nocturnal erections and consistent ED for over a year would suggest this.

I think accusing him of Munchausen's Syndrome is an inappropriate and perhaps even a damaging thing to do.


A few points I want to make, purely based on my own reading and experiences:

1. There's no evidence to suggest that one can a develop a physical dependency to PDE5 inhibitors, although a psychological dependency may be possible. Thinking about how PDE inhibitors actually work, biochemically, I'm not sure how a physical dependency could develop. If you can rule out a psychological dependency, then a decrease in potency of PDE5s probably means your condition is worsening.

2. Ultrasounds and MRIs are currently the best tools to detect fibrosis....but they're not perfect. In an ultrasound's case harder scar tissue will bounce back more soundwaves and therefore appear white, or at least lighter on the scan image. An MRI works be detecting the movement of protons in response to the magnetic field. The protons react differently depending on the tissue type in which they sit. Fibrosis is registered as a dark mass, presumably because there is little proton movement in tissue with high levels of collagen.........

.....and here lies the problem. The essence of fibrosis is excessive collagen distribution. When collagen is distributed in one localised spot, then an obvious scar forms, and the ultrasound/MRI can detect it. But what if the collagen distribution is more spread out? Can these tests still pick it up? My guess is not so well. Collagen is also the cause of hardening of vascular walls in vascular disease and it's been noted in recent clinical guidelines that the vascular spaces and blood vessels of the penis are too small to be assessed by even an MRI scan. So could an MRI detect 100% perfectly any fibrosis in the penis? I'm not so sure.

3. Medical pros appear to be coming round to the idea that venous leak (veno-occlusive disorder) in and of itself, is not a cause of ED. It is the secondary result of the primary cause. Anyone who has organic ED technically has venous leak. For example men with peyronies and ED often complain of venous leak, but actually it's the fibrotic plaque preventing their tunica albuginea expanding sufficiently to compress the emissary outflow veins.

UCLH, where sonnyjim has had his tests, do not do cavernosograms as standard. Sonnyjim would need to go private to have this test.

[Werther]

OP, possibilities are two: you are a troll or you're dumb as F~@<.

Did I encourage you to break your dick or did I tell you that you don't have lumps and your Erectile Dysfunction is for sure psychological? I just told you that it's impossible that fibrosis doesn't show up on ultrasound and mri, so your lumps aren't scar tissue. Atypical peyronies doesn't exist, because what's called peyronie's is scar tissue and you have none, so, plain and simple, you don't have any Peyronie's disease.

Then it's ridicolous that you accuse me of being like those PEGYM guys when all I (and pretty everybody else here) adviced you was to get certain tests done, while you're the only one who's maybe still keeping damaging his penis (you said that you're still manually stretching it, but you don't have any curvature, so what's the point in doing this? Isn't this like jelqing? You've damaged yourself this way and you keep doing it? You must be a genius for sure).

In the end, do whatever you want. If you think that obsessing over and over again about something that you don't even have (and that even if you had it, you couldn't solve with herbs, supplements and all this BS) is entertenaing to you, I'm nobody to say you should stop. Just have fun.

@PeetyPeet: you could be maybe right with regards to the possibilty of an ultrasound non detecting scar tissue, when is very very little in dimensions, but if you feel it with your hands most probably it's not the case and something like this (when we're not talking about scarring located exclusively in the septum) does necessarily cause - at least a little bit - bending and/or deformity, because it's in the erectile tissue but, being fibrotic, it doesn't expand; OP has none of this and two tests confirmed that he doesn't have scar tissue, so people should answer him nonetheless that he has fibrosis?

[sonnyjim]

Seriously what kind of a cabbage are you to say I'm making this up. I have said I will be doing the test but as I have to pay for it privately, it will take a while to get the money.

I also said more than once that I can feel lumps on my dick, so whether or not that shows up in a test or not nobody can seem to tell me what that is. It isn't just me saying that ALL fibrosis doesn't show in an ultrasound it's not exactly hard to find people who are saying the same thing as I am. Ultrasounds obviously aren't as great as you are making out.

Is all scar tissue classed as peyronies or is it only peyronies if you have a bend because that is whats confusing me. I have hard lumps, they do not move. They are not big, one is like a cord and the other one is right at the base.

What kind of an idiot would sit on a forum posting all of this crap if he was making it up? Honestly I have better things to do but as nobody seems to be able to help me it's understandable I'm going to be looking for answers.

No need to get personal about it.

[sonnyjim]

Peetypeet do you have lumps that you can physically feel or not? You say you have the same symptoms as me and those tests were the same.

He has a point, if they are big enough for me to be able to touch why are they not showing on either test? It is strange.  

[Werther]

Look man, I don't want to get personal about it, but you're the one who accused me of being one of those PEGYM's guys who get people to ruin their dicks and then just tell them that it ain't possible.

You told me that you're not the only one who has scar tissue but it didn't show up on ultrasound. Sorry, but I don't believe you: who are these other guys?

PeetyPeet's examples concern cases of minimal scars that you wouldn't even feel with your hands, not big palpable lumps like the ones you're talking about; something like this would cause bending and/or deformity for sure if it was scarring, because it's like an obstacle in the middle of an expandable tissue (the erectile one) and when this one inflates, it bends where the scarring is (look at this video at min 2.50 for a graphic explanation: https://www.youtube.com/watch?v=a8TJ0E3BOUA).

In my opinion you should stop thinking about Peyronies Disease or fibrosis, because it's very unlikely that you have these.Other users, docs, medical tests and evidence told you this.

I've been harsh with my previous comments because you kept ignoring all the above and it was repeated lots of time. And sorry if you felt offended, but I have venous leak and peyronie's scars by myself and I get mad when I read BS like lots of the ones that were written here (e.g. take supplements and scar tissue will go away, ultrasound can't find scars, your penis will stay straight as an arrow even if it's scarred) and I'm not talking only about your posts.

I was just trying to help, but in the end, you're free and you can listen to whoever you want. I won't post on this topic anymore, since it looks like it annoys you.

Good luck with your journey.

[PeetyPeet]

Peetypeet do you have lumps that you can physically feel or not? You say you have the same symptoms as me and those tests were the same.

I can feel a 'woodiness'. I know what you mean when you say it feels like sandpaper, but I can't feel large lumps. I can't compress my penis, particularly near the head.

He has a point, if they are big enough for me to be able to touch why are they not showing on either test? It is strange.

There are several possibilities:

1. You have fibrosis but it was not picked up on the tests due to limitations of the scans and/or human error.

2. You have localised vascular disease which even an MRI scan can't pick up. Arteriosclerosis and Atherosclerosis across the corpus Cavernosum might feel woody/hard/lumpy.

3. You have another problem for which you have not had a test, e.g. prostate cancer (I'm not seriously suggesting you have prostate cancer, I'm just saying this as an example).

4. You have a problem which medical science has not heard of.

5. There's nothing wrong with you.


I think the most likely scenario is no. 2, but that's just my opinion based on your posts, my own experiences, and things I've read.

[sonnyjim]

I was just trying to help, but in the end, you're free and you can listen to whoever you want. I won't post on this topic anymore, since it looks like it annoys you.

Good luck with your journey.

I appreciate you trying to help but I mean, I don't know why it hasn't shown on either test. You seem to think that I want scar tissue on my dick honestly if this isn't scar tissue and can actually get better I would probably die of happiness with the crap I have been through over the last 15 months.

I just don't know what else it could be if it isn't that... I want my dick back, I want my life back most of all and nothing helps. I am desperate just to get a diagnosis or some urologist to tell me it will be sorted out.

I have lost everything that made me happy and my life has fallen apart since this crap started I don't want sympathy I just need to get to the bottom of it and urologists are actually useless...

The only other way I can describe how it all started is basically I woke up in the morning after sex with my girlfriend (ex now) in a lot of pain, my dick was shrivelled to a size smaller than I've ever seen it and was cold. The pain lasted about 5 months maybe in this time I was rushing to appointments trying to find out what it was but getting nowhere like I still am.

Immediately after that, my dick never felt the same way. No tingles, no arousal like normal, basically didn't feel the same way and that hasn't changed. Like something internal had changed.

I began having problems getting an erection but ED pills still worked well. Strangely most of my pain was while flaccid and worse if I sat down etc.

After those 5 months the pain went away but it was kind of numb and this is where the ed started to come in severely. I kept losing erections and my flaccid just felt lifelesslike it's just hanging there pointlessly.

Flaccid size is probably like 3.5 inches now and doesn't feel the same as before, plump and about 4.5 inches with more girth. Now it's just thin like there's no blood in it. Doesn't feel spongy either like before.

Erect size I cannot accurately measure because I cannot get fully hard even with injections it's rubbery like something isn't expanding properly but I can tell the size difference is at least three quarters of an inch in length and half an inch in girth.

[sonnyjim]

Also when I am sitting down I have weird sensations all the time it feels sometimes tingly sometimes it feels uncomfortable as squeezing feels.

Does Atherosclerosis happen at this age usually?

I am thinking it is jelqing damage but I didn't jelq for that long surely to have permanent problems like this.

[cheeznips]

i feel like he has more of a neurological problem than a vascular one. It's pretty obvious that you had an injury but if the doctor's cant find a venous leak or a scar tissue in the mri than you probably have a neurological issue. and, you say you have have all these tingling feelings in your penis that's your nerves trying to re cooperate from the injury and it takes time for those to heal.
I had the same exact issue you were having. i was having tingling and pins and needle for a long time, but just hold on and wait for your nerves to heal. In the meanwhile try to relax and not waste so much time. Go to work because you have to pay your bills. When your nerves do come back you might have realized that you wasted the last 2 years of your life doing absolutely nothing.
everybody needs to calm down. This isn't a problem you can just vent to people in real life. so why not let him just vent here. It sucks that something that makes you, you is damaged.

[sonnyjim]

The lump is like a cord that wraps around the underside of my dick and since then my dick hasn't expanded like normal and sensation is just not there anymore it feels like I don't even have a dick.

It could be a nerve thing I don't know but there are definitely lumps there.

Also another thing I showed the urologist was my glans always has white spots like blood isn't reaching it normally or something but he said he doesn't know what this could be. Whenever I get an erection (which is rare) the glans stay soft too.

[cheeznips]

isn't the glans connected to the corpus spongiosum? my guess would be that if you injured the cs then the glans would probably be affected too. atleast your having tingles, my penis underside and urethra are straight numb.

[sonnyjim]

I have almost no sensation so sex isn't really enjoyable at all anymore I am just struggling to see what can possibly be done to sort this out and I doubt I will ever be the same.

It's depressing me to the point where I feel like suicide every day of my life. I literally find no enjoyment in anything anymore and before this I was confident and happy and people generally liked me as I was always cracking jokes.

What could it be if the lumps are not scar tissue this is what I don't understand. And how is my size so much smaller?

[cheeznips]

Me too man, I'm in a really tough place too.

[sonnyjim]

Nothing can help me now I think it is too late to be honest.

Viagra etc was working and now nothing is so that's a sign that things have gotten worse and there's nothing that I can do now apart from have an implant and end up with a below average mechanical dick.

How things can change so much in one year is actually shocking my life used to be good, sex used to be good and now because of this I'm just thrown in the garbage, useless.

[cheeznips]

who knows if it will be a below average mechanical dick? maybe it will fill out nicely if done correctly?

yeah life can change drastically in a matter of 10 minuets.

[sonnyjim]

Thing is people are saying it improves if you take Viagra or Cialis for over a year, I have been and it has gradually stopped working how does that mean it will improve anything? Viagra and Cialis must do nothing to prevent things from getting much worse because they have, I am living proof of that.

What hope do I really have of 5mg Cialis daily doing anything now? Although I am still taking it hoping for some sort of a miracle.

The cord like lump I am talking about is rock solid and I can actually make clicking noises with it.

[cheeznips]

I think your pegronies is stabilizing  

[TonySa]

Low dose for peyronies, your issue is ED-believe need high dose for that-glad to hear you're trying some new supplements for ED per other post.

[sonnyjim]

This is the full list of what I am taking now everyday:

Cialis 5mg
COQ10 500MG
L Citrulline 1200mg
Propolis 1000mg
L Carnitine 2grams
Gingko 6000mg

I don't believe both tests could be right and not show anything because when I feel my penis, apart from the cord like lump the main one I am talking about which is hard, there is another lump right near the base on the right side and just under the glans there is another rough patch and some of the tissue there feels like, torn.

Will this heal in time does anyone know? Or are these supplements I am taking pretty much pointless.

I am guessing it's the lump near the base that is causing most of my ED problems and turtled flaccid but I can't just believe that in time it will go away.

What else can I do?

I'm using VED also for 20 minutes every day but even that seems to do nothing. I think this is severe so I don't know why an MRI or Doppler wouldn't show anything.

Do MRIs show everything like torn tissue etc ?

[TonySa]

Once you have the cavernosography you will know more.  Meanwhile continue what you're doing!

[sonnyjim]

Will that show the actual damage?

I am running out of money and time...

Oh, and hope.

[cheeznips]

imo i think you should just leave in alone and take your daily cialis and coq10, and masturbate every once in a while. I don't think you should do ved. I mean i guess you may have some indents but erections over time will fix that problem. I'm more afraid that you might over pump and hurt yourself again. just kinda leave it alone. Your body will let you know when you can have sex or masturbate again.

you should take a cavernosography. take the test and stop messing with your dick so much

[Paolo]

sonnyjim, take that advice from cheeznips, rest up your penis.

[sonnyjim]

The only indent I have is at the base and that is where the lump is, causing my erections to be weak at the base.

I will stop VED and leave it alone but I have pretty much left it alone for the last couple of months and not seen an improvement. I just don't know why both tests would show nothing when I am having such severe problems. I am guessing the damage is not on the tunica but somewhere deeper inside.

I can't find anywhere that do cavernosograms in London.

What are the chances that this can still heal and my erections improve while just taking Cialis and other supplements because from what other people are saying it seems like there is no hope of that..  

[PeetyPeet]

I respectfully disagree with Cheeznips and Paolo.

As you do not appear to be getting nocturnal erections, not even with Cialis, it is important to maintain blood flow to the penis.

VED will help with this and if used careful should not exacerbate your problem.

[sonnyjim]

I'm not sure how to deal with this psychologically it is beating me down. I appreciate the help and advice you guys are giving me but I feel like I'm living day to day.

On one hand I'm hoping that I don't have any scarring etc because neither test showed it but on the other hand I'm like how can I not have? I know I'm not crazy, I can feel lumps.

I am trying to use VED carefully but I'm not sure where to go from here as I seem to be just waiting for some kind of improvement or these lumps to go away, which I know from reading enough posts here, they do not. So how can I believe I am going to fix my ED without an implant, which I cannot afford and is out of my option without diagnosis anyway.

Has anyone had similar injuries that have healed and ED improved?

Peetypeet you seem to have similar problems to me apart from no lumps that you can feel. Have you had MRI or Doppler done?

I don't know what this could be if it isn't scar tissue of some sort.

[kusher]

It seems that u had a partial fracture while u were asleep ( fracture is possible while asleep ) it is not as common as fracture during sex but it happens sometimes. It has been more than 12 months and it is time for your to change your strategy. Popping pills and going to a wide variety of docs will not solve your long lasting issue. It's time to change your plan. Try this and you might see improvement. For 4 months 120 days, don't watch porn, don't touch your penis, don't think about your ordeal. Just shift your attention and let things heal naturally. After 4 months evaluate your situation and you might figure out that you were just overthinking it. Apply man1 oil cream to your penis to increase sensitivity and nerve regeneration. Everyday do some pelvic training like squat to increase blood flow into that area and to strengthen the muscles. Other than that, sport, healthy food. Social support. I had 3 surgeries on my penis with numerous injuries such as necrosis. Now with time and healthy life style, am seeing improvement in terms of erection sensation. I would say am 60-70 recovered.  

[sonnyjim]

Won't I lose size if I do nothing at all?

Use it or lose it and all that crap ?

[cheeznips]

yeah i think this is psychological beating me down too. I've been missing school, been staying inside. I don't meet up with friends or anything. I just wish my urethra nerves and my corpus spongiosum nerves will just heal asap. I've noticed that my my sex drive is completely dead. it's hard to realize that you may never get your nerves ever again.

[PeetyPeet]

Peetypeet you seem to have similar problems to me apart from no lumps that you can feel. Have you had MRI or Doppler done?

Yes, I've had both MRI and Doppler Ultrasound. Neither showed any fibrosis or wasting. I trust the results of ultrasound, but not the MRI as it was performed poorly and because of the limitations of the scan that I have already mentioned.

[sonnyjim]

And do you think it is possible I dont have any scar tissue since both of these tests don't show it?

Cannot figure out what it would be if it isn't scar tissue to be honest plus I never had all these ED problems before either.

[PeetyPeet]

The possibilities are:

1. You don't have scar tissue
2. You do have scar tissue but the tests didn't pick it up.

[sonnyjim]

So should I have the tests done again or not do you think?

Another Doppler? I dunno...

[PeetyPeet]

Did you say your penis was flaccid during the MRI? If yes, the MRI may have missed something because your penis was not erect.

You may have to go private to have another MRI. There's no harm in asking UCLH though....

[sonnyjim]

No they gave me an injection for the MRI

But... I wasn't fully erect it was like a weak semi that I used to get before all of this happened.

I honestly don't know how nothing showed up on either test when I feel hardening in so many different places including right near the base.

Maybe I do not have peyronies i.e. a bend in my penis but pretty sure there is something severely wrong and some sort of scarring, would it be seen even in the early stages? I did have both tests after at least 6-7 months of feeling these lumps but I still feel discomfort although it isn't nearly as painful as right in the beginning.

[sonnyjim]

This is crap.

[cheeznips]

My uro said it was possible that I tore the corpus Cavernosum without tearing the tunica. Do you feel your urethra when you urinate or the underside of your penis sonnyjim?

[sonnyjim]

Nope.

I feel like, completely numb. I basically don't feel anything anymore (including pleasure).

Cannot believe this is happening to me and there's nothing I can do to make it better... Can't even get a diagnosis.

[cheeznips]

you really are like me. i'll be seeing a urologist who specializes in urethral trauma/damage. i'll make sure i let you guys know.

[cheeznips]

I really hope I didn't tear my urethra.  

[Jack1909]

Make ice test to assess if you are numb or not..if you can feel hot and cold you are not numb you are just mentally involved.  

[sonnyjim]

I think I am gonna need an implant to solve this and that is the last thing I want to be honest I want my own dick back.

Just struggling to see how this could improve on its own or even with Cialis and all these useless supplements.

Any other advice before I accept I have to godown that route ?

[kusher]

Usually people get implant after 4-5 years of impotence. Ur not even 30 and u wanna get a mechanic inside ur body? If u keep asking urself.. can I get erection?? Can I maintain it?? Is it hard enough?? U will never achieve erection that way. Penile rehabilitation requires both physical and mental effort. Both equally important. Your worth is more than an organ. Use traction, cialis daily, sport and healthy lifestyle till end 2018. Then u can start testing ur erection  ability. For now just take a break and don't test it frequently and just enjoy the journey of recovery. U can think about implant if no improvements within 12-16 months. The more u think about it and test it.. it will get worse. Just chill  

[sonnyjim]

That is my point, there hasn't been any improvement since November 2016, that is well within the 12-16 months you stated although pills were working 6 months ago.

I want to try Pentox since people are saying it made their flaccid size go back to normal and softened their lumps but the majority of people here do not have severe erectilw dysfunction but do have curves.

I dont have a curve or a bend just severe ed and it seems like I have lost all pleasure from sex and basically just feel disconnected from my dick, like it isn't there.

I don't want an implant, infact I would probably rather die than have one and lose more size but this injury is not healing and the lumps are actually rock solid now so I can't see any other way that could possibly improve my situation now other than surgery of some sort.

Nothing I do is working.

[Paolo]

You are best discussing low dose alpha blockers with your GP, for one they block stress hormones, something I think you have, secondly for certain people they help erectile dysfunction.
You are probably now so far in an adrenaline loop that all thoughts of sex and intimacy cannot happen.

Please consult your GP with this, you would need to stop the Cialis before starting A-blockers (blood pressure)then gradually reintroduce PDE5i (if necessary), you may not need to.

Post after seeing your GP please on what happens please, what have to lose, if the GP is responsive, and they should be get your hormones tested, how do YOU know otherwise if Testosterone is LOW, heck you could have a testosterone level of a 70 Year old?

[sonnyjim]

I don't even think I am stressed anymore maybe I could of said that 1 year ago but there is no way on earth stress would make you have all of these problems.

Something is very wrong.

[cheeznips]

Nerves are shot. You obviously tore or injured something. Maybe it was the urethra that's what I'm checking. If not then there's nothing that can be done. Nerves heal slowly. I understand the disconnected dick feeling. I get constant panic attacks.

[sonnyjim]

Is your flaccid size a lot smaller as well like me?

If I did tear something surely it has healed by now? Maybe the scar tissue there is causing all of these problems that's all I can think of but then why did neither test show it? Arghhh.

Have you had an ultrasound or an MRI done?

If so did yours show?

[Pfract]

@cheeznips: it's appalling, that the only thing you talk about is "injured urethras". There is so much more that you should be doing, talking about, researching, but no. You've somehow fixated on this urethra thing, and now you talk about nothing else. You don't even realized yet, that for you to tear your urethra in a penile fracture, it has to be a very severe one, with very grave consequences.... huge hematoma, blood all over the place, inability to urinate, excruciating pain.... but yeah. keep lying to yourself.

I guess, somehow you find solace and comfort on this.

[Paolo]

sonnyjim, your mailbox is full, please prune your messages as I cannot mail you!
Paul (paolo)