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Other Peyronies Disease Discussion Boards => Open Questions or General Comments (that won't fit under any other topics) => Topic started by: sonnyjim on August 27, 2017, 11:00:53 AM

Title: Very bad situation
Post by: sonnyjim on August 27, 2017, 11:00:53 AM
Hi guys just looking for a bit of advice.

I had a Doppler ultrasound last week and the urologist said he sees no problem and everything seems normal except I have had severe ED since last November and all of the following symptoms:

Smaller flaccid/weak erections
Lump like a cord on bottom of penis (CS)?
Smaller erections/low EQ
Need Viagra to get erect and even that doesn't make me fully hard
White spots on head of penis (lack of circulation?)
Little sensation (sex doesn't feel half as good as before)
No pain (had pain erect and flaccid initially that lasted 6 months)
Cannot ejaculate during sex (lose erection before that or when I do ejaculate nothing 'comes out
Penis doesn't seem to expand like before and even after taking Viagra (nothing happens without it) that only gives me a longer flaccid and it takes a lot of manual stimulation to get erect (70-80% at best) and if I stop I will lose it in seconds.


I am not sure why nothing could be found on the Doppler but does this rule out Peyronies?

I know there is something seriously wrong with me but I'm not sure what it is, do these symptoms sound like Peyronies? I have no bend or curve while erect but my flaccid is constantly turtled and my erections are a lot weaker even with 200mg Viagra.

Any help would be appreciated, my relationship is really suffering and I can't do anything about it.

I am 28 years old, I smoke too but I always have and it hasn't affected me THIS much, ever.
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 27, 2017, 11:50:22 AM
Man the injuries from jelqing are serious, there are a lot of people injured, I have your same symptoms.
Soft glans is very common in injured from jelquing, and it is a venous leak, there is cases here like your and in FT too. I do not want to scare you but implant seems the only solution if it does not improve with pills or injections
Was your doppler with injection?
Title: Re: Very bad situation
Post by: sonnyjim on August 27, 2017, 12:18:52 PM
Yeah I had an injection and that didn't even give me a proper erection only a longer flaccid which was still soft.

Is this Peyronies? because the guy who did it said he saw no problem with it which is strange because I swear 99% of men would get an erection with one of those injections
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 27, 2017, 01:03:25 PM
Probably is not peyronie or at least not peyronie as it is commonly known, I think it is more like diffuse fibrosis,  some doctors say it is because to the increase of collagen by the exercises which causes tiny breaks in the tissue which makes its expansion is more difficult, many doctors dont see the problem with a doppler, maybe you should try a cavernosography. I had a doppler and it did show nothing, but like you I did not get an erection, only a bigger flaccid, then I got a cavernosography and it showed venous leak.

But you should have this in your mind, doctors know nothing about the problems in penis, unless you have a big curve or big plaque or many fibrosis they will not know that say , and probably they will tell you that it is in your head because you are young but you like me, you know it is due to an injury, so do not trust in urologists, they know nothing about problems in penis really and they can only offer temporary cures like pills or injections that in some cases do not work or as a solution implant if pills or injections do not work. They really do not know how to do anything else

And yes maybe not 99% but 80% get a very good erection with injections
Title: Re: Very bad situation
Post by: sonnyjim on August 27, 2017, 02:47:15 PM
Is there any hope in this getting better or my erections coming back? I mean, other than pills which don't do much anymore?

I have tried most things that people have recommended and I'm still seeing no signs of improvement.
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 27, 2017, 03:44:42 PM
In my case and in many other cases it does not improve by itself, in my opinion it will not improve by itself, kegels and other things with venous leak is BS. Maybe some surgery helps, but it alone will not improve. I tried many things too (no porn, no fap, kegels,eat, exercise.. all BS)

It is an organic problem, and if pills and especially injections do not work(because injections is the last wall before implant) it is very difficult another thing like eat or kegels can help much
Title: Re: Very bad situation
Post by: sonnyjim on August 27, 2017, 06:27:43 PM
I just want my dick back to how it was this is ridiculous I'd rather have one leg than have this problem...

Before it was all fine and now I can't get a decent erection no matter what I do or try, what kind of crap cards have I been dealt here.



Title: Re: Very bad situation
Post by: Christopher1 on August 27, 2017, 10:29:22 PM
Start with VED and nocturnal viagra.

This will bring blood back into the penis.
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 28, 2017, 02:10:23 AM
I would not use VED, it is very similar to jelqing, if you are not very careful, it will only make it worse.
Title: Re: Very bad situation
Post by: sonnyjim on August 28, 2017, 05:42:21 PM
I have started taking (today):

coq10
l arginine
pine bark extract
vitamin d2+d3

I am also going to use gentle traction. I dunno what to expect really, but my performance is suffering greatly with this problem and doing nothing hasn't changed much.

Could a poor diet make matters worse? Would better diet help me get stronger erections?
Title: Re: Very bad situation
Post by: JayGould on August 28, 2017, 08:32:51 PM
Sounds like you have CPPS (Chronic pelvis pain syndrome). I have the same thing, but I have a curvature as well. It's basically cramped muscles in your pelvis. You should visit a physical therapist who specializes in the pelvis and get an evaluation.
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 01:49:20 AM
So is it possible that I don't have Peyronies or Venous leak? Would these have showed up on a Doppler ultrasound? because they told me everything was fine, its not and hasn't been for 10 months.
Title: Re: Very bad situation
Post by: Paolo on August 29, 2017, 02:56:36 AM
sonnyjim, I would add to your supplements L-Citrulline, I use it myself and can be bought quite cheaply in powder form
Citrulline Benefits (http://www.peaktestosterone.com/Citrulline_Benefits.aspx)

or
https://examine.com/supplements/citrulline/

Yes, a poor diet will make things worse for sure, changing diet habits is a big commitment however.
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 03:44:42 AM
I will try and add L citrulline but I already seem to be spending a lot of money on things that haven't worked at all for me.

Any one know if peyronies can be identified on an ultrasound? because being told you are fine when you have had a cord like lump for 10 months and lack of morning woods or spontaneous erections you do kind of wonder if you are going mad or not.

My problem is sustaining erections, during sex I go soft and can't get hard again. Will traction help with this at all? diet? or am I stuck with this crap?

Urologists seem clueless.
Title: Re: Very bad situation
Post by: JayGould on August 29, 2017, 06:10:09 AM
sonnyjim - Yes, it is possible everything is fine and that it's simply a muscle contraction that happened during the injury. If you were very stressed about it immediately afterwards the muscle may have cramped permanently.
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 08:15:23 AM
That doesn't explain the cord like lump that will not go away no matter what I do.

I don't even feel like I actually have a penis right now. Could there be another reason for this other than scar tissue/peyronies? I thought I would find out from a Doppler ultrasound but obviously not.
Title: Re: Very bad situation
Post by: JayGould on August 29, 2017, 08:59:33 AM
It could still explain the cord like lump. I have a cord like lump as well. Do you have any of these symptoms too?

- Hard in flaccid state (not erect, just hard while still flaccid)
- More visible veins
- Change of color (more red?)
- Less blood flow to the glans
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 11:00:21 AM
I had hard flaccid when I first started getting the pains 10 months ago but sometimes it goes away and comes back now and again.

My flaccid size has changed greatly and unless there is pain then I could pretty much frget I even have a dick.

No libido
No erections without Viagra (which even then is a struggle)

Had Doppler and apparently I'm normal and fine. wtf?

The cord doesn't change or move but I can feel it there.

Numbness and less sensation in penis
Losing erections before ejaculation during sex
Need a lot of stimulation to stay hard (70% of my previous erection quality/size)
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 29, 2017, 11:16:02 AM
Soft glans is a clear example of venous leak, it is not less blood flow to glans, it is bad out flow, the veins which keep the blood in glans are f'^+'ed (because you continue with soft glans even with viagra or injection?, because if it was arterial problems your soft glans with injection would be fixed)

In my opinion CPPS is BS, looking for jelqing injured on the internet, there are many cases (search ukguy for example) and they spend years trying things that do nothing, including exercises for the pelvic floor and nothing works for them and all with soft glans (some fixed their soft glans with surgery) but several still having problems maintaining an erection. But listen if you want to spend your money on supplements that will do very little or nothing, ok, it is your money
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 11:33:35 AM
I actually have white spots from bad circulation on the head of my penis.

it's frustrating watching your whole life fall apart for something you took for granted before and now.you wish you could have it back but it's gone, it seems like a nightmare.
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 11:58:00 AM
Does the Doppler being 'normal' rule out Peyronies or venous leak? or does it actually mean nothing?

I did it when flaccid, had an injection (which gave me a slightly longer flaccid) and apparently everything looks fine.

Why does my dick feel smaller then and how is it almost impossible to get erect?

Would a better diet help me at all?
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 29, 2017, 12:33:39 PM
No, doppler is not a very precise tool to detect venous leak, it fails many times to detect venous leak and fibrosis if your fibrosis is little or it is not a big noticeable plaque (diffuse fibrosis), doppler wont catch it, it is better to detect arterial problems
If you had an injection and you did not get an erection, it is impossible that everything is well, it is more like something is bad for sure

You penis feels smaller due to you have problems with blood flow, probably bad out flow

I would try with viagra or cialis for a time, or maybe you can try with a higher dose of injection or bimix or trimix or a ring with them
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 01:26:03 PM
What are the chances of this getting better?

Title: Re: Very bad situation
Post by: suicidecomingsoon on August 29, 2017, 02:06:23 PM

how long have you been dealing with this?
Title: Re: Very bad situation
Post by: Tychy on August 29, 2017, 02:27:00 PM
CPPS is actually not BS. But you can diminish blood flow to the glans by either having problems in the pelvic floor, jelquing induced artery bursting or arteriosclerosis. So the argumentation "it didn't help for dick stranglers" does not mean it's not working for people with a hyperactive pelvic floor.

And you will know if you have a hypertonic floor once you connect with down there and feel it drop the first time in months or years.

I also have a small white spot on the left side, which is usually "the good one" and I'm on Cialis. Didn't find a solution but also don't care at the moment. Reverse kegels usually expand my glans, so it's a blood pressure problem.
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 29, 2017, 03:04:08 PM
Well, you can think what you want, but I have been investigating and talking with injured from jelqing people (like me) for several years, and almost all have the same symptoms, these are difficult to get an erection, since they need a lot of physical stimulation to get it, and when they get it they are on the edge of orgasm, in addition if they stop stimulating, the erection will fall in seconds, also they almost all have soft glans, it only swells before orgasm, they did reverse kegels and helps them very minimally, is not a cure or an approaching to be a cure.

Some of them did venous surgery and helped them, several fixed their soft glans although some still had problems with the corpora cavernosa.
That I know arterial problems did not have, some did dopplers and some did not get an erection with 20 alpostradil, others got erection but with the glans and soft cs. Pills did not work in them

As I said some were under venous surgery and fixed their soft glans, but many continued to have problems with the corpus cavernosum
I think all this makes it quite clear that the soft glans problem when it comes from jelqing is a venous leak, and it also seems to indicate that while the soft glans might be fixable with surgery in some cases, the corpora cavernosa seems not to be possible in the majority

Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 03:22:36 PM
Quote from: suicidecomingsoon on August 29, 2017, 02:06:23 PM
how long have you been dealing with this?

Since last November mate...

Urologists are even clueless it seems.
Title: Re: Very bad situation
Post by: Jack1909 on August 29, 2017, 07:41:46 PM
I've been dealing with it for a decade... don't rush, keep calm
Title: Re: Very bad situation
Post by: sonnyjim on August 29, 2017, 07:46:55 PM
A decade? if I have to deal with this for much longer I think I'm gonna go crazy.

I can't even get Pentox which has helped everyone the most from what I've read. I'm 28 years old and I feel like my life is over before it ever really started to be honest.

What would of been the best years of my life are spent looking for solutions to a seemingly impossible situation and what's worse is I didn't even know this much damage could be done to a dick.
Title: Re: Very bad situation
Post by: Jack1909 on August 30, 2017, 12:16:46 AM
I know you are upset but you cannot say that, just don't leap to conclusions. It might upset you even more, but from the outside it's pretty clear you are emotionally involved right now..I'm pretty sure things will improve over time. Pentox is helpful if you have Peyronies Disease and plaques, it's useless in my case too..don't worry if you can't take it's not really a game changing for people like us. On the other hand, cialis might be useful..
Title: Re: Very bad situation
Post by: Jack1909 on August 30, 2017, 12:17:48 AM
(I'm 27)
Title: Re: Very bad situation
Post by: sonnyjim on August 30, 2017, 02:00:13 AM
It's not that I can't take it, I haven't had a diagnosis yet and I'm being told I'm perfectly fine because nothing was seen on the Doppler.

I've tried Cialis and Viagra which sometimes seem to work and other times don't work at all which confuses me like is this getting worse now? not sure.

No morning wood, no spontaneous erections, nothing. To think, before this I could have sex two or three times a day and now this, its depressing.

There must be something I can do to get my dick working again? My diet has been pretty bad, sometimes I don't eat at all with the stress of this, could that be a factor?
Title: Re: Very bad situation
Post by: Tychy on August 30, 2017, 03:04:01 AM
@sonnyjim:
Did you do jelqing? I can't find anything in this thread about you doing this. But suicidecomingsoon is talking all the time about it?

I think the not ejaculating part is important. Does it dribble out afterwards or does nothing come out and your pee is cloudy afterwards?
Even when your penis is completely limp, ejaculation will lead to semen coming out (just not high velocity streams). If it does not, but urination is fine, means something is obstructing the flow while you are having an orgasm. This is either a problem with the prostate or with muscles. There isn't so much plumbing that's not shared with urination.
Title: Re: Very bad situation
Post by: Jack1909 on August 30, 2017, 03:12:22 AM
It could be, it might be the quality of the sleep as well..there are tons of things capable of altering such a delicate balance. My suggestion is to give yourself a break..if you are doing stop evaluating your erections, don't take each of them as a test, it's just harmful. Take cialis before going to bed for some months not just when you need and see what's going.
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 30, 2017, 03:29:19 AM
Quote from: Tychy on August 30, 2017, 03:04:01 AM
@sonnyjim:
Did you do jelqing? I can't find anything in this thread about you doing this. But suicidecomingsoon is talking all the time about it?

Man he is not the first time he writes here, if you are interested you would read his story a little before doubting what I say
He said "I would not recommend penis enlargement to anyone if you are talking about jelqing or stretching etc... This is what I believe caused the formation of scar tissue on my penis and I've lost length and girth. Had I of not read up on penis enlargement I wouldn't be here now. suffering."
Title: Re: Very bad situation
Post by: suicidecomingsoon on August 30, 2017, 03:32:04 AM
Quote from: sonnyjim on August 29, 2017, 03:22:36 PM
Since last November mate...

Urologists are even clueless it seems.
Wait until one year, if it does not improve, I think it wont improve by itself after one year IMHO
Title: Re: Very bad situation
Post by: sonnyjim on August 30, 2017, 03:50:50 AM
If it doesn't improve after one year is it ever really likely to?

Title: Re: Very bad situation
Post by: suicidecomingsoon on August 30, 2017, 04:01:48 AM
[Full quote remove - Admin]

I have this crap since some years ago and it never get better, It is more like it gets worse
The jelqs forums should be forbidden, banned, and their admins  they should pay for all the young people they cheated advertising their exercises as without risk.

In a just world they would be dead after being tortured
Title: Re: Very bad situation
Post by: sonnyjim on August 30, 2017, 04:39:10 AM
Would diet play any part in this as well or doesn't it really matter what I eat? My diet has been pretty bad and I've been starving myself some days because the stress makes me have no appetite.

Funnily enough on helping forums there are still people promoting jelqing to people with scar tissue and peyronies, its really like a sick joke.

Title: Re: Very bad situation
Post by: suicidecomingsoon on August 30, 2017, 04:53:04 AM
Yes, eat healthier will help, but the improvement will be light, not a cure or a come back to before injury. Another thing you could try is hot baths, it will do nothing for venous leak but it could help with hard flaccid and it is good for blood circulation

Yeah those forums are BS, their advice harms people, and they are destroying the lives of many, I can not understand how they remain open, I know dozens of injured by these exercises
Title: Re: Very bad situation
Post by: sonnyjim on August 30, 2017, 02:32:22 PM
Would traction help at all? Something like the Phallosan?

I don't have a curve or bend at all but it could stretch the scar tissue (if thats what it is) in theory?

Title: Re: Very bad situation
Post by: suicidecomingsoon on August 30, 2017, 03:37:16 PM
Maybe I am not sure, I do not know, but for testing you lose nothing
Title: Re: Very bad situation
Post by: Paolo on August 30, 2017, 04:04:53 PM
sonnyjim, I would think a VED would be of more benefit than traction, if you don't have a curve or bend then I think a VED would 'stretch' the scar tissue.

I don't have any experience with VED however but if you search member 'Old Man' then you can read his many posts, he is the expert on VED usage. If used safely then VED can probably assist getting your erections back.

Get your diet in order also, eat more fruit and vegetables, vegetables especially.
Title: Re: Very bad situation
Post by: sonnyjim on August 31, 2017, 02:05:34 AM
This is absolute hell, I swear to God, I would not even wish this on my worst enemy.

Not having a proper erection for 10 months and being told everything is alright after having an injection in your dick which may or may not even make things more worse than  they were to begin with and still not knowing what is wrong with you.

Not only am I losing the will to live, I lost all enjoyment in my life and now all I do is come home from work and lie in bed all day, looking for miracle cures on the internet.

I have a girlfriend that i am trying my hardest to keep with me although my dick keeps shrinking and the ED getting worse and all the while I feel like my life is on hold because even urologists won't show me enough concern to figure out what this problem is.

To think, 10 months ago I was loving my life and never even though that much about my dick is a bitter pill to swallow.

I know it's selfish but I really have felt like I want to die for so long because there is nowhere to turn and I can't see the point I  anything any more.

Title: Re: Very bad situation
Post by: Jack1909 on August 31, 2017, 05:59:15 AM
In the coming years more treatments will be available, hopefully..don't give up.
Title: Re: Very bad situation
Post by: sonnyjim on August 31, 2017, 02:54:59 PM
In this case would anything at all help me get harder erections? And what does an ultrasound rule out, if anything? Is it basically pointless to have a doppler ultrasound then if scar tissue or venous leak cannot be found? And if it isn't that, what could it be causing these problems?

I hear about other people seeing improvements but I'm not seeing any no matter what I do. I have also tried VED but I don't feel as though I can even maintain an erection long enough and it goes down as soon as I have the VED on, it's like blood isn't moving through my penis even half as much as it used to.

I doubt traction would even work as I've been stretching manually since last November and it hasn't helped me one bit, I still have the turtled flaccid this crap caused me back then, it's like it doesn't stretch and blood doesn't circulate well enough so it's always in it's tiniest state, no semi, no erections etc. Before it would vary and I would get a semi just with a thought of seeing my girlfriend and now, the only state I see is turtled flaccid.

Kegels don't seem to push blood into my penis like they used to either, I can hardly feel a pull. Reverse kegels are the same.

Title: Re: Very bad situation
Post by: LWillisjr on August 31, 2017, 03:26:22 PM
Quote from: sonnyjim on August 31, 2017, 02:05:34 AM
Not having a proper erection for 10 months and being told everything is alright after having an injection in your dick which may or may not even make things more worse than  they were to begin with and still not knowing what is wrong with you.


I am trying to understand your point here.....  Did they give you an injection and you did achieve an erection??
Title: Re: Very bad situation
Post by: sonnyjim on August 31, 2017, 04:24:28 PM
Yes I had an injection and no, I didn't get an erection.

But somehow that's ok and everything is normal, nothing unusual found despite my symptoms and obvious (to me) lumps.

Feel like I'm going crazy.
Title: Re: Very bad situation
Post by: PeetyPeet on August 31, 2017, 04:34:44 PM
My heart goes out to you Sonnyjim - you remind me so much of my younger self. My ED started when I was a few years younger than you are now and like you my life went from blissful to horrible in the space of a few months. I had a frustrating time with pretty much all the medical pros and in the absence of answers I would spend hours, normally until the early hours, reading anything and everything online in the hope of helping myself. Alas, this forum wasn't as visible back then as it is now so I never came across it.

Almost 14 years on I'm sad to say I'm just as impotent. Severely so, in fact....but I've had all the tests, ultrasound, caversonography, penile-MRI (injections never worked) and the Nocturnal Penile Tumenesence test and despite a lengthy history of consistent (worsening, actually) symptoms, as far as the medical pros are concerned, I'm completely normal and it's all in my head. 

That someone as severely impotent as myself can be considered normal says to me that current methods for assessing ED are inadequate, and I would take any results with a pinch of salt....especially as your injection did not induce a full erection. Let me guess they explained to you that you would need an erection for best results, but after the injection failed to work they said an erection didn't matter...?

So then here's some practical advice for you based on my experiences:


1. Use a VED regularly. I know you've not had much luck with it yet, but trust me, in the absence of nocturnal erections, a VED will allow you maintain bloodflow and oxygenate the penis. Regular good quality nocturnal erections maintain the integrity of the erectile tissue. Without them your ED can get worse steadily over time. VED can help counteract this effect and I'm confident if I had started using it earlier my ED would not have become as severe as it is now. There is a VED protocol on the forum or by all means PM me for technique advice.
2. Are you taking any regular medications? if so, read up on them and make sure none of them contain steroids / hormones. If they do, I would suggest coming off them immediately - even if it's 'harmless' stuff like hydrocortisone cream for eczema.
3.  L-arginine is a good supplement in the short term, but your body can develop a tolerance to it. I would suggest taking it just a few hours before sex....or if you want to take it regularly then have a few weeks on then a few weeks off to let your body reset. You could also try pycnogenol and pomegranate supplements which can work well with L-arginine.

Alas, I have to leave the forum now and rejoin the real world, but by all means PM me anytime. Our situations are very similar.

Best

Peety



Title: Re: Very bad situation
Post by: suicidecomingsoon on August 31, 2017, 04:56:26 PM
Have a clear thing, if you had an injection and did not get an erection is impossible that everything is normal and it is impossible to be psychological, do not listen to the urologists if they tell you that everything is in your head after that, because that is simply lie
Title: Re: Very bad situation
Post by: sonnyjim on August 31, 2017, 05:50:36 PM
So how do I get this sorted out? I mean, 10 months of this crap and it's got to the stage where I feel like I am going to do something crazy, I just don't know what yet. I can't speak to anyone about this, I wouldn't expect anyone to understand and it's too F^@$!ng embarrassing to tell someone your dick has shrunk to a ridiculous size (was like 4 and a half inch flaccid, same girth > barely 3.5 and thin and erection has gone from 6.5 x 5.5 to under 6 inches with about an inch less girth)

I feel ashamed that I can't pleasure my girl like I used to be able to.
Title: Re: Very bad situation
Post by: Tychy on September 01, 2017, 01:38:34 AM
Definitely use VED, if you don't get nocturnal erections. Just to keep the tissue healthy.
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 04:55:22 AM
Dont i need an erection in order for VED to do anything for me?

I cant even get a semi without a lot of porn and "masturbation" so how would that help me out?

I hate this crap before atleast i knew that i could satisfy my girlfriend and now i just suck in bed ;(

this is a really sick nightmare I swear.
Title: Re: Very bad situation
Post by: PeetyPeet on September 01, 2017, 05:33:26 AM
Yes, it's a nightmare, and there's no appreciation of this from medical pros and that's something that needs to change.

Okay, there's no easy way to say this - there is currently no cure for ED. I've never really heard of anyone getting back 100% what functionality they've lost. But you can do the following to help prevent things getting worse and maybe provide some improvement:

1. Regular VED - Some men need a semi, some do not. Read the protocol and experiment. Or give me a PM. Always be careful.
2. Take low dose daily Cialis, say 5mg. Your GP may be willing to write you a private prescription, or you can buy it fairly cheaply from https://www.riverpharmacy.ca/. Unfortunately, you will need a urologist's approval for an NHS prescription.
3. You could try gentle traction - there is some evidence this can help with erectile function. It may help you regain your size. Again, be careful.
4. You could try the following dietary supplements: Garlic, zinc, pomegranate, Omega 3, L-carnitine, L-arginine, Folic Acid, Alpha Lipoic Acid. You could also try L-citruline instead of L-arginine. Most of these are essentially good for vascular health and anything that is good for vascular health is good for penile health.
5. Give up smoking. I appreciate it isn't the cause of your ED, but it won't be helping now that you have ED. It's also a convenient excuse for your urologist/GP/whoever to point the finger and get you out of the door should you choose to approach them again. Don't give them that excuse.
6. Drink moderately. Eat wisely. Exercise. This will also be good for your mental health.
7. You could consider a penile MRI - this is seemingly the best assessment for erectile tissue health - but it certainly isn't perfect and isn't performed everywhere. UCLH in London do it. If you want some advice on how to get a referral outside of your NHS trust give me a PM.

Best


Peety
8.
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 07:36:07 AM
I had the doppler done at UCLH, are these people good at what they do? I.e is it possible that because nothing showed on the doppler that I dont hate peyronies and there is something less or more severe causing these problems?

IF there was something to find would they hate found it on the doppler and if not why did i not get an erection from the injection?

I will try the things suggested to me but i am very worried because since i had the doppler it seems loike i have lost more size/eq
Title: Re: Very bad situation
Post by: Pfract on September 01, 2017, 08:30:27 AM
sonnyjim: it is appalling that you did not even had a proper examination, and yet, you are here freaking out without searching for proper information. Dude... Were you told to stimulate your penis after you had the injection? you are supposed to masturbate, but not ejaculate to give you the best erection possible. If you did not have an erection, you have to wonder: was the medication strong enough? what were you injected? caverject... alprostadil? bimix? trimix? .... how many units? this is the type of stuff you have to know, before doing whatever. Only with your penis fully erect, are you able to know exactly how the blood flow to your penis REALLY is, and if you have fibrous tissue or not.

And yes, i did a doppler with the best sexual medicine doctor there is, in California....
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 09:17:08 AM
So fibrosis wouldnt be seen if the penis was flaccid?

I also have white spots on the head of my penis so clearly there is a circulation problem somewhere.

Anyone think this could be a pelvic floor issue? Someone suggested this to me but ive never seen Anyone talking about pelvic floor causing lumps on the shaft.



Title: Re: Very bad situation
Post by: Paolo on September 01, 2017, 09:55:08 AM
White spots are probably Fordyce spots, nothing to worry about I think.

Have you thought of heat packs or warm baths to get some blood flow going, it's basic I know but it would also confirm if your nervous system is giving you some stimulation along penis length.

Internal fibrosis wouldn't be seen in my opinion, I think I have internal fibrosis because my penis looks, with the exception of a dorsal (top) curve completely normal flaccid and erect. Some men have obvious signs of plaque that can be seen and felt, I do not, that's the thing with this sh!^^y disease, so to speak no two penises are the same  :(

Why not try and get a detailed blood test, that would include a serum testosterone test (free testosterone), a hassle I know but worth consideration perhaps  :)

Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 10:06:42 AM
They are not raised spots that isnt what i mean. It is more like when you press your finger into the palm of your hand, like a lack of blood flow.
Title: Re: Very bad situation
Post by: Tychy on September 01, 2017, 10:09:44 AM
Fordyce only appear on the shaft and testicles, I know, I have a lot of them.

You mean a whitened area. This is definitely lack of arterial inflow. Reason? You'd need an angio MRI for that. And even then the MRI resolution may not be enough for such small vessels.
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 11:30:26 AM
Is that likely to improve on its own?

Can i do anything to help it?

It sounds so fkn bad ;(
Title: Re: Very bad situation
Post by: Tychy on September 01, 2017, 12:54:41 PM
It may. Put a picture of the spot in the members only pictures board, if you like.

Otherwise I would go for Cialis, VED and maybe pentox (it should make red blood cells more flexible). Just everything that Peety said.

ESWT may help with angiogenesis (creation of new blood vessels).
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 01:42:53 PM
I can pay for Cialis and Viagra although its expensive but i cant get a prescription for Pentox because i haventbeen diagnosed yet and anyway i hear its almost impossible to get one in the uk anyway.

FML
Title: Re: Very bad situation
Post by: LWillisjr on September 01, 2017, 04:14:07 PM
Quote from: sonnyjim on September 01, 2017, 04:55:22 AM
Dont i need an erection in order for VED to do anything for me?


NO, You don't need one in advance. The VED will do all the work. It sounds like you don't understand how a VED works. Read up on it more.
Title: Re: Very bad situation
Post by: sonnyjim on September 01, 2017, 06:30:28 PM
Thats the thing mate, i dont get an erection when i use VED. If i went in with a semi, id come out flaccid.
Title: Re: Very bad situation
Post by: lessor on September 01, 2017, 10:06:24 PM
Read the Pete28 s story, Ved isnt good in all cases. He said after Ved he was worse than before and it did worse his situation, and like you ,ved didnt get and erection to him, he said

"2. Use of VED
I  really don't apply to much pressure. I cannot create a total erection with it, only very slight semi-one before it's starting to hurt. Two times only five minutes at moderate pressure and i am totally impotent (really no spontaneous response anymore) the day after. And when the erection returns, it's softer than before. I really have the feeling that the VED worses my case. I dont get it. I dont know what i am doing wrong. Some other members also experienced this 'numbness' after using VED. It's clearly something that happens more. Which physical effect causes this numb, impotent feeling? Damage to nerves, tissue overstretched? Theoretically, you could aspect the use of VED pumps fresh blood in the chambers + the stretching of tissue is stimulated, so erection should be easier (in stead of more difficult) to achieve ?"
Title: Re: Very bad situation
Post by: Tychy on September 02, 2017, 02:09:32 AM
I also can't get an erection with pumping without stimulating, but erection afterwards is easier to achieve.
But as the protocols say, you shouldn't get an erection with the device at all.
Title: Re: Very bad situation
Post by: Pfract on September 03, 2017, 08:01:39 AM
Why did i even bothered to reply to this thread? it's just ridiculous that sonnnyjim completely ignores all the important questions i have asked him. I quit answering bull.sh.it threads like this!!!
Title: Re: Very bad situation
Post by: sonnyjim on September 03, 2017, 04:42:47 PM
Quote from: pfract on September 01, 2017, 08:30:27 AM
sonnyjim: it is appalling that you did not even had a proper examination, and yet, you are here freaking out without searching for proper information. Dude... Were you told to stimulate your penis after you had the injection? you are supposed to masturbate, but not ejaculate to give you the best erection possible. If you did not have an erection, you have to wonder: was the medication strong enough? what were you injected? caverject... alprostadil? bimix? trimix? .... how many units? this is the type of stuff you have to know, before doing whatever. Only with your penis fully erect, are you able to know exactly how the blood flow to your penis REALLY is, and if you have fibrous tissue or not.

And yes, i did a doppler with the best sexual medicine doctor there is, in California....

It was Caverject.

He didnt give me a normal amount he said because hs didnt want me walking around with an erection all day long even though i assured him that wouldnt happen.

I basically had a semi which was even a poor semi (how it used to be)

What i hate now is the fact that my flaccid has got so smsll that its ridiculous and difficult to even get a semi let alone erect.
Title: Re: Very bad situation
Post by: sonnyjim on September 05, 2017, 03:45:09 AM
I could even deal with the shrinkage if I could still get an erection but now I cant even get that. My flaccid is all lumps and bumps and basically I dont feel like it will get better...

Dont think im gonna be around for much longer the psychological effects of this have ruined me already.
Title: Re: Very bad situation
Post by: Tychy on September 05, 2017, 05:36:09 PM
116 123 in the U.K. if you need acute help (I may over interpret things because of the other post).
Title: Re: Very bad situation
Post by: sonnyjim on September 05, 2017, 06:14:36 PM
If that is a number to call for help i appreciate it but since last november when this happened ive been through neverending hell. Not just from trying to explain to psychiatrists (who tell me its all in my head its not possible for your dick to shrink) having to explain to my girlfriend, who somehow hasn't noticed an obvious size difference (more so when flaccid but also noticeable erect) and the psychological effect of having been always up for sex with her, to now having to fake and pretend i am enjoying it when i cant even get properly hard with Viagra.

I understand we are all in the same boat here but last year this girl was THE ONE and sex was great, very intimate and now its like im hanging onto her like a thread all because of this condition, disease, or whatever (if i  even have it)

I know its wrong to say but at least if we had cancer we would know that sooner or later we were going to die - with this we are just sitting around hoping to die.

There should be better treatment for this and Pentox shouldnt be so hard to get in the UK if its proven to help people. I dont understand why more isnt done i mean ive went through this crap since last November and i still havent even had a diagnosis, its ridiculous.

Makes me wonder what i did to deserve this. I dont want pity im just annoyed that ontop of the pain it seems impossible to get an erection also.

Its pointless spending more cash on supplements that are supposed to reduce the size of the scar tissue because they do not work we might as well flush our money down the toilet rather than give it to sick people who prey on anxious people looking for resolutions like us.

Its just all about money

Title: Re: Very bad situation
Post by: nowhereman on September 05, 2017, 07:30:24 PM
I would reread the thread and look at all the different things people have said. Over the last 13 years I have had to unravel my own dick problems. And Jelqing injuries, porn induced erectile dysfunction (PIED) and Chronic pelvic pain syndrome/tightness were all partially responsible for my symptoms. And that's just on the functionality front.... >:(
And now a surgery has left me in almost certainly worse shape than I was a number of months ago. So first thing, become calm and tread slowly and carefully.

You said you can get somewhat hard with porn, that means porn is having an effect on Erection quality. Maybe it's a small effect. But if you stop watching it and your erection gets 10% better. Well that's something. For me the erectile benefits of not watching porn are utterly transformative. So don't underestimate it. I love porn btw, this isn't some moral BS.
Hard Flaccid is definitely caused by pelvic floor issues. I argued that on Prostatitis - CPPS - Interstitial Cystitis Forum - Chronic Prostatitis CPPS Forum (http://www.chronicprostatitis.com/forum/) all the way back in 2006, before it had a name, and was shunned. But it can also somewhat be caused by injury/inflammation, in my experience.
I would investigate all those things. And just understand with a LOT of time. This stuff can heal. The most horrific nightmare in my life started when I really injured myself back in march 2013. I couldnt even touch a spot on my dick that swelled up for significantly more than 2 years. Thats right. erections hurt like a fu$% too. So hang in there things can get better.
Title: Re: Very bad situation
Post by: PeetyPeet on September 08, 2017, 07:36:46 AM
Quote from: sonnyjim on September 05, 2017, 06:14:36 PM
Not just from trying to explain to psychiatrists (who tell me its all in my head its not possible for your dick to shrink)

Misinformation like this is appalling in my view. Rather than serve to reassure patients, it makes them feel like they're going insane. As we all know the penis can shrink as a result of a decrease in flexibility of the tunica albuginea due to fibrosis, and/or loss of integrity of the erectile tissue - and this is acknowledged in clinical guidelines.

When having moments of doubt about whether it's all in your head or not, bear in mind the following: no test is perfect.
1. Neither the MRI nor the ultrasound can detect vascular disease inside the penis. The veins and vascular spaces in and around the corpus cavernosum are just too small.
2. While the MRI is the best instrument to look at tissue integrity, for the same reason as above, I believe one can detect localised pockets of fibrosis / wasting, but not the defused kind.
3. The penis needs to be 100% erect, and the vascular spaces to be fully expressed, to able to draw conclusive results. After many failed caverject injections I've frequently been told that actually the inject doesn't matter...well if so, what's the point? very silly.
4. I suspect human error is common. A busy radiologist will peruse your results. Will they have time to really think about your condition? probably not.

With the exception of no.4, all of these are acknowledged in clinical guidelines. In light of this I question whether it's ethically sound for urologists to make judgements on a patients' psychological wellbeing - which is essentially what they're doing when they tell you you have a psychological problem - and I hope to make this part of my documentary.
Title: Re: Very bad situation
Post by: sonnyjim on October 01, 2017, 05:37:38 PM
Back again guys, dont know why as theres not much anyone here can do for me I guess we are all in the same boat, shrinking dicks for life!

Now i can no longer make my girl cum and did I also mention i have practically 0 sensation in my dick now, great.

IS this a sign that things are getting worse, do any treatments actually work or is this it?
Title: Re: Very bad situation
Post by: Hontas on October 05, 2017, 11:46:29 AM
Quote from: sonnyjim on October 01, 2017, 05:37:38 PM
Back again guys, dont know why as theres not much anyone here can do for me I guess we are all in the same boat, shrinking dicks for life!

Now i can no longer make my girl cum and did I also mention i have practically 0 sensation in my dick now, great.

IS this a sign that things are getting worse, do any treatments actually work or is this it?

It could restore function and improve maybe try some oral supplements??
Title: Re: Very bad situation
Post by: kovasis on October 06, 2017, 05:24:31 AM
sonnyjim,
As hard as it may sounds , but i dont would let the presure of "have to make my Girl cum" rule my World.
I was also on the Edge of loosing my relationship due to obsessive freaking out about my Condition.
Only thing I learned is that the more you get despaired and excited the worser your Situaition will progress (at least in your mind).

Ok I'm not suffering as severe as you from ED , but currently also only have firm Erections while using cialis and Sildenafil prior to Sex.

As mentioned in a couple of other posts I think that it is really important to EXACTLY determine what the Problem REALLY is , which means you can not
judge everything from only have one Ultrasound or one Injection with a weak Erection result.

All the other Examples you are talking about sounds like you're really stressed all the time, which is also not a good indicator to have and maintain a firm Erection.

Please dont get me wrong, I'm not trying to say that your problem is your Mind, but as long as you dont have a proper diagnosis everything is specualtion and every possible solution is anecdotal....

If i would suffer that severe i would do nothing else than find how ever a specialist who diagnoses properly and the decide what need to be done next...

Title: Re: Very bad situation
Post by: NeoV on October 06, 2017, 06:48:16 AM
There is definitely hope to restoring your penis to a more normal shape or more like it was before.

Traction and VED are seriously effective, they are no joke. And yes, diet is everything. How healthy is your heart? if it isn't extremely healthy, your penis likely isn't either. The cause of Peyronie's is not scarring, it's the inflammation that occurs before the scarring. Your blood sugar should be low, get it down to 70 fasting and get your hba1c below 5. Get your triglycerides down, and never spike your blood sugar, never drink alcohol, and focus on taking it easy! Eat as many veggies as you can, you need antioxidants to beat this disease. Never lose hope man.
Title: Re: Very bad situation
Post by: sonnyjim on October 08, 2017, 10:51:06 AM
I have no curve or bend, im not sure whether that is because or where the lump or scar is, whether I have peyronies or similar, i dont know.

All i know is that, it feels like there is little blood flow down there and a lot more so when im flaccid, it feels like I have lost what i used to have, a half decent flaccid size with some plumpness to it, now its constantly turtled, smaller and if i am lucky enough to be able to get erect it never feels full like before and takes a lot more time.

I always stretch and that has made no difference at all, its just stressful how a little lump could cause this much stress and so much difference to my dick.

I have an MRI coming up in a couple of weeks and if that shows nothing, like the ultrasound did, I dont know how I will react.

If this isnt Peyronies what else could it be?
Title: Re: Very bad situation
Post by: suicidecomingsoon on October 08, 2017, 11:43:27 AM
When it is a jelqing injury it is more likely to be a venous leak ..
Title: Re: Very bad situation
Post by: sonnyjim on October 08, 2017, 05:48:55 PM
I also have white spots on the glans where blood is obviously not flowing to the glans normally... I dont know whether or not this will improve by itself but do any of you guys have this problem as well?

I am willing to try anything at this point but the numbness in my dick is just worrying, it seems to have gotten worse gradually since I had the pain last November.

So instead of pain I now have numbness

Title: Re: Very bad situation
Post by: Christopher1 on October 09, 2017, 06:53:57 PM
Have you tried testosterone?

Sometimes testosterone can fix ED.
Title: Re: Very bad situation
Post by: sonnyjim on October 10, 2017, 04:17:24 AM
I dont think testosterone would help as my levels are pretty normal.

I rarely get morning wood, maybe one morning in about the last three months and it was weak, basically like a semi. Nothing can get me hard apart from 100+mg of Viagra Plus a lot of stimulation and this is with my.girlfriend who I obviously am very attracted to.

At this point I am not even living right, cant work up the motivation to do much... And really, if things dont or cant improve, I dont know how long I can live like this.

It wouldnt even be AS bad if I had my normal flaccid size back and had ED but my flaccid is also affected and constantly turtled up. It just feels empty.

What really are my options now that Viagra has stopped working?

Title: Re: Very bad situation
Post by: james1947 on November 10, 2017, 08:28:21 PM
sonnyjim

What you mean pretty normal?
The "Normal" range is huge and you want to be near the top as much as you can

James
Title: Re: Very bad situation
Post by: sonnyjim on November 23, 2017, 09:46:49 PM
Hello guys, still no real improvements, I'm just getting worse.

200mg of Viagra doesn't make me get hard, without constant manual stimulation and if I stop, it goes down very quickly.

Flaccid size will not change, I am stuck in a state of constant turtling now, no matter how much traction I do or regular use of VED. I am not really sure what else I can do, does ED usually improve over time? It hasn't so far....

I have white blood spots on the glans and my flaccid feels tiny.

Blood flow issues?
Title: Re: Very bad situation
Post by: Jonbinspain on November 24, 2017, 01:54:03 AM
Sonnyjim;

Sounds like venous leakage for sure.


VED can help with that. It helped me to get and maintain strong erections after my surgery
Title: Re: Very bad situation
Post by: PeetyPeet on November 24, 2017, 10:35:22 AM
Hi Sonnyjim,

Yes, Blood flow issues. Not necessarily venous leak, but blood flow all the same.

I strongly suggest you return to your GP, explain your worsening symptoms,  and request referrals for further tests, namely a cavernosography (to check for venous leak) and a penile MRI (which, albeit not perfect is the best instrument to check the integrity of the erectile tissue). You could also ask your GP for a low dose daily cialis prescription while you're there. They might not give it to you but it's worth a shot.

Don't be scared to disagree with them, or indeed any expert, if they start telling you a penis can't shrink...it can.

As someone else who has worsening and consistent symptoms, along with a constant battle with medical pros, I really sympathise with you. Drop me a PM anytime.

best

Peety
Title: Re: Very bad situation
Post by: sonnyjim on November 25, 2017, 03:59:03 PM
I have had an MRI I'm just waiting for the results of it.

Surely something must show on an MRI?

Do I have any hope of treatment other than surgery or am I just dreaming?

I think I have already said it but I have white spots on the glans the type you'd get from lack of blood flow.
Title: Re: Very bad situation
Post by: PeetyPeet on November 25, 2017, 06:17:41 PM
An MRI scan can show if you have corporal fibrosis (scarring in the erectile tissue) or wasting of the erectile tissue (this is when the cells die off).

It can't show localised vascular disease in the penis as the blood vessels and vascular spaces of the erectile tissue are too small for the scan to detect them properly.

No test is perfect.

The white spots suggest a blood flow problem although I would expect your glans to be overall paler and smaller, rather than isolated white spots. If you haven't already shown these to a doctor I suggest you do so.

I should mention that if you overdo VED and/or stretching, it can cause temporary turtling. I do VED every other day as everyday seems to be a bit much for me.

Have had, or been offered the rigiscsan? (also known as the NPT test)
Title: Re: Very bad situation
Post by: sonnyjim on November 26, 2017, 08:42:21 AM
No only an ultrasound and an MRI.

The ultrasound didn't show anything apparently there is noproblem even though I didn't get hard with the injection. Was just a very weaksemi.

The MRI must show something surely.
Title: Re: Very bad situation
Post by: suicidecomingsoon on November 26, 2017, 12:09:13 PM
I already told you, when you do not get hard with the injection, when you have soft glans after jelqing, it is very likely a venous leak, you just have to search the internet about other guys injured by jelqing and you will see that they are in the same situation like you, I know this is hard and hard to admit but if you want to know the truth is this, jelqing is a big lie and causes injuries as serious as this one.

If you can, get a caversonography or perhaps an arteriography even though they are not perfect either
Title: Re: Very bad situation
Post by: sonnyjim on November 28, 2017, 07:13:47 AM
So is it likely that I am permanently impotent ?

Title: Re: Very bad situation
Post by: DN on November 28, 2017, 04:48:52 PM
It still blows me away that men are unaware of the protocol for this type of situation. Must be because urologists are unaware of or unwilling to share with the patients the proper protocol.

Peyronie's patients who present with erectile dysfunction to a specialist are treated the same as any man who present with erectile dysfunction. The treatment is as follows:

1. Oral PD5E inhibitors (cialis/viagra), if you can have satisfactory erections then no further treatment of ED, may treat peyronie's curvature with pentox/xiaflex/surgery.

2. Injections, e.g. trimix. Not recommended for patients with peyronie's already as injections can worsen peyronie's. However, if you are satisfied with this treatment then no further treatment necessary.

3. Vacuum erection device, cock ring, muse suppository, combinations of pills/injections, etc. Not many men use this for any extended period of time, this is desperation mode.

4. Penile implantation. Choose high-volume implant surgeon if available. AMS LGX or TITAN device. High satisfaction, also corrects peyronie's deformity, erection on demand.

For those who did not get erection during their ultrasound injection, you may very well have a large venous leak. If you are not able to get satisfactory erections and sex life from pills or injections you need to bypass your urologists and consult a penile implant urologist. The implanter will address your situation and determine if you are a good candidate for implantation.

Look up the FT implant forum
Look up Dr. Eid in New York, he is arguably one of the world's leading implant surgeons.

WTF are you guys doing living years of your life completely impotent?!?! Get a penile implant.................. This must be ignorance due to having crappy  urologists and not thoroughly searching the internet. A high volume implant surgeon will not lose penis size.
Title: Re: Very bad situation
Post by: PeetyPeet on November 29, 2017, 02:02:09 AM
In the UK one cannot receive any treatment without first being diagnosed. Medical practitioners take a 'hard evidence' based approach. For ED a patient needs to demonstrate that they have significant ED and a clear organic cause for that ED in order to be diagnosed. If this 'hard evidence' isn't there, you are diagnosed as having a psychological problem, by default. It's not an ethical way of doing things in my view, but there you are.

The NHS is good in that it's free, but patients enjoy much less control over their 'pathway' and it will be difficult for Sonnyjim to 'bypass' any urologists he's seen up to this point. Even if he goes private, it is often the same urologists he would see on the NHS, unless he chooses to go to one in another area of the UK. Besides, in going to UCLH Sonnyjim has already experienced the best ED clinic the UK has to offer.

He could, as you say, go abroad. But that's going to be very expensive.


Sonnyjim, in answer to your question, I would say it is possible that you are permanently impotent. As I've mentioned before, men who have non-psychological ED rarely regain full functionality. It all depends on the cause of your ED.

Title: Re: Very bad situation
Post by: DN on November 29, 2017, 12:27:17 PM
What I would do if I had severe ED (not getting erect with 200! mg of viagra) for a year and could not have satisfactory penetrative intercourse for that time:

1. Try 20-40 mg Cialis
2. Get injections and administer them myself (e.g., trimix etc)

If neither of those work, as SonnyJim suggests, I would make an appointment ASAP, even if I had to jump through hoops, with Dr. David Ralph in London to move towards penile implantation.

If that is not possible I would save money, take out a loan, beg or borrow, and go see an implant surgeon in the US.

Eid and Kramer are ~27,000 USD
Karpman in California is much cheaper ~19,000 USD and is an excellent alternative to Eid and Kramer.

I would say though, if Cialis 20-40 mg and viagra 200! mg don't work then injections just aren't suitable for a young man and it would be a good idea to move towards implantation, however you get there.

Also, the US takes your 'hard evidence' based approach too. Sometimes it's too 'hard evidence' because private insurance doesn't want to pay for everything. If SonnyJim cannot provide an ultrasound or MRI showing scarring and/or venous leak he will run into road blocks. But with the confidence that Cialis and Viagra don't work then he will get there, I am aware of many others who have been implanted without a clear diagnosis of their ED.

At this point SonnyJim should stop being frantic and start taking the advice of these members and begin action.
Title: Re: Very bad situation
Post by: PeetyPeet on November 30, 2017, 04:20:00 AM
Quote from: DN on November 29, 2017, 12:27:17 PM

If SonnyJim cannot provide an ultrasound or MRI showing scarring and/or venous leak he will run into road blocks. But with the confidence that Cialis and Viagra don't work then he will get there, I am aware of many others who have been implanted without a clear diagnosis of their ED.


Alas, in the UK, the ineffectiveness of PDE5 inhibitors is not considered sufficient evidence that one has organic ED. I speak from personal experience. I can barely get an erection on Cialis 20mg (over 20mg is considered too much for a single dose in the UK). UCLH's advice? We've found nothing on your scans and you can just about get an erection on 20mg cialis. Your ED is inorganic, come back to us when you think you might need injections'. Just completely baffling.

If Sonnyjim is able to demonstrate on an NPT Test (Nocturnal Penile Tumanescence) that his nocturnal erections are sub-par, he will be given access to treatment regardless of his MRI and ultrasound scan results. The problem is that NPT test uses a crude machine called a 'rigiscan' that cannot measure true rigidity and one doesn't need to demonstrate much functionality to be considered normal. Just one (semi) erection lasting 10 mins or longer is enough. The average number of nocturnal erections for healthy men is 3-6 a night, so it doesn't make sense.
Title: Re: Very bad situation
Post by: TonySa on November 30, 2017, 07:06:19 AM
Maybe rig the rigiscan overnight on something else so there are no nocturnal erections in that case?
Title: Re: Very bad situation
Post by: PeetyPeet on November 30, 2017, 12:08:23 PM
Had I known more about the rigiscan before i did the test I might have tried that.

In my case a nurse woke me up at close to 1am to check I was wearing the device correctly. I suspect that if the rigiscan showed no tumanescence at all then it would be suspicious.
Title: Re: Very bad situation
Post by: DN on November 30, 2017, 01:05:48 PM
So you and SonnyJim are unable to have intercourse on the highest doses of Cialis (20mg) or Viagra (100mg) for a long period of time, over a year? And they are unable to identify through ultrasound any organic cause for your ED? Are they able to identify peyronie's scar tissue?

Again, I would try to schedule an appointment with Dr. David Ralph.

I would get a hold of some caverject or trimix injections and give myself those to see my response. However, I wouldn't want to do that for any extended period of time.

Then if I absolutely couldn't get a satisfactory erection with cialis or viagra and there was no way forward with UK health care I would save/beg/borrow/loan my way to an implant in the US. If money is an issue Dr. Karpman in CA is reasonably priced and world class (~19000 USD). You could email his office and arrange it with him.

I would imagine that after you already have an implant the UK heath care would consider revisions necessary and cover those in the future.

Its a hard road to walk down but personally I could not handle an extended period of time without being physically able to have intercourse.
Title: Re: Very bad situation
Post by: cheeznips on November 30, 2017, 01:58:27 PM
Sonny jim what was your injury?

Can we see the results of your doppler?
Title: Re: Very bad situation
Post by: sonnyjim on November 30, 2017, 02:11:01 PM
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?
Title: Re: Very bad situation
Post by: suicidecomingsoon on November 30, 2017, 03:30:13 PM
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
Title: Re: Very bad situation
Post by: DN on November 30, 2017, 03:58:26 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on November 30, 2017, 04:08:23 PM
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...
Title: Re: Very bad situation
Post by: james1947 on November 30, 2017, 04:34:22 PM
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
Title: Re: Very bad situation
Post by: suicidecomingsoon on November 30, 2017, 04:40:06 PM
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

 


Title: Re: Very bad situation
Post by: DN on November 30, 2017, 05:11:41 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on December 01, 2017, 08:49:09 PM


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.
Title: Re: Very bad situation
Post by: PeetyPeet on December 02, 2017, 04:47:45 PM
They can't 100%. No test is perfect.

Did you have an erection for your MRI scan?
Title: Re: Very bad situation
Post by: popopo on December 03, 2017, 02:09:38 AM
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.
Title: Re: Very bad situation
Post by: lessor on December 03, 2017, 06:45:29 AM
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
Title: Re: Very bad situation
Post by: PeetyPeet on December 03, 2017, 08:26:12 AM
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.
Title: Re: Very bad situation
Post by: sonnyjim on December 12, 2017, 05:23:03 AM
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.
Title: Re: Very bad situation
Post by: suicidecomingsoon on December 12, 2017, 06:24:11 AM
If you can not continue like this, and nothing works, go for a implant guy..
I am starting to consider it too
Title: Re: Very bad situation
Post by: james1947 on December 12, 2017, 06:25:25 AM
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
Title: Re: Very bad situation
Post by: sonnyjim on December 12, 2017, 01:18:30 PM
I can't even get a diagnosis let alone an implant.
Title: Re: Very bad situation
Post by: lessor on December 12, 2017, 03:11:38 PM
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.
Title: Re: Very bad situation
Post by: PeetyPeet on December 13, 2017, 02:07:21 AM
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.

Title: Re: Very bad situation
Post by: TonySa on December 13, 2017, 04:52:55 AM
Wow, sounds like straight up gate-keeping...refuse treatment (preventing financial impact to the system) at all cost.  ☹️
Title: Re: Very bad situation
Post by: PeetyPeet on December 13, 2017, 05:34:42 AM
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.
Title: Re: Very bad situation
Post by: sonnyjim on December 13, 2017, 04:01:42 PM
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.

Title: Re: Very bad situation
Post by: TonySa on December 13, 2017, 10:10:31 PM
I'd do a phone or email consult w a high volume implant doc like Dr Eid or others recommended on this forum.
Title: Re: Very bad situation
Post by: PeetyPeet on December 14, 2017, 03:35:43 AM
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.

Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 09:29:55 AM
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
Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 09:54:11 AM
@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.

Title: Re: Very bad situation
Post by: PeetyPeet on December 14, 2017, 10:31:54 AM
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.

Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 12:13:22 PM
Why would you say my scar tissue isn't on the tunica ? Is that easier to get rid of?
Title: Re: Very bad situation
Post by: PeetyPeet on December 14, 2017, 12:48:05 PM
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?

Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 02:08:53 PM
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...

Title: Re: Very bad situation
Post by: PeetyPeet on December 14, 2017, 03:14:06 PM
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?

Title: Re: Very bad situation
Post by: 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?

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 :(

Title: Re: Very bad situation
Post by: TonySa on December 14, 2017, 05:54:37 PM
Traction, Coq10, ALC, etc...all should help
Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 06:39:44 PM
Then why aren't they ? Am I worse off than everyone else or something ?
Title: Re: Very bad situation
Post by: TonySa 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?
Title: Re: Very bad situation
Post by: sonnyjim on December 14, 2017, 09:16:06 PM
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.
Title: Re: Very bad situation
Post by: PeetyPeet on December 15, 2017, 12:08:15 AM
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.
Title: Re: Very bad situation
Post by: sonnyjim on December 15, 2017, 09:59:55 AM
So realistically what are my options?

I cant see myself living like this.
Title: Re: Very bad situation
Post by: Jack1909 on December 15, 2017, 11:35:54 AM
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.
Title: Re: Very bad situation
Post by: TonySa on December 15, 2017, 01:34:45 PM
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. 
Title: Re: Very bad situation
Post by: PeetyPeet on December 19, 2017, 05:04:15 AM
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.
Title: Re: Very bad situation
Post by: sonnyjim on December 28, 2017, 03:18:23 PM
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 ?

Title: Re: Very bad situation
Post by: sonnyjim on January 26, 2018, 04:59:32 PM
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.
Title: Re: Very bad situation
Post by: NeoV on January 26, 2018, 05:52:27 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on January 26, 2018, 06:44:58 PM
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.
Title: Re: Very bad situation
Post by: NeoV on January 26, 2018, 07:46:32 PM
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?
Title: Re: Very bad situation
Post by: sonnyjim on January 27, 2018, 02:49:32 AM
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?

Title: Re: Very bad situation
Post by: NeoV on January 27, 2018, 07:58:29 AM
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.

Title: Re: Very bad situation
Post by: sonnyjim on January 27, 2018, 01:11:29 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on January 30, 2018, 05:59:59 AM
Anyone?
Title: Re: Very bad situation
Post by: NeoV on January 30, 2018, 06:45:44 AM
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!
Title: Re: Very bad situation
Post by: PeetyPeet on January 30, 2018, 04:40:58 PM
Quote from: NeoV on January 30, 2018, 06:45:44 AM
The cord, if it was scar tissue, would likely appear on the ultra sound unless your urologist was an average joe uro.

At UCLH it's the sonographer that assesses the ultrasound results. He then writes a brief report which is uploaded to the Hospital's database and accessed via a terminal by a urological registrar in clinic. It's unlikely that a urologist has seen Sonnijim's scans first hand.

I need to read more about ultrasounds and sonography. I'm aware that they must be calibrated for different tests. Different frequency soundwaves need to be used depending on tissue type etc. It's a plausible scenario that the machines are not calibrated correctly for all varieties of fibrous plaque.
Title: Re: Very bad situation
Post by: sonnyjim on January 30, 2018, 06:23:52 PM
Quote from: NeoV on January 30, 2018, 06:45:44 AM

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.


Can't see it mate, then again it feels like it's quite deep. Deeper than a vein would be I think, I don't know. Can't see any colour or anything.

About the white spots they are not risen or anything its just like lack of blood circulation causing it. The cord that I am talking about is pretty thick, thicker than it was in the beginning when the pain started I couldn't feel it but my symptoms worsened
Title: Re: Very bad situation
Post by: sonnyjim on January 31, 2018, 01:33:15 PM
What will help me if anything at this stage?

Would pentox reverse the damage?

I am thinking if peyronies did not show up on either the Doppler or the mri that maybe this damage was caused by something else (I.e. priapism?) But would that not show on those tests?

I am 1/2 to 3/4 shorter in length than I was before this and I have also lost girth (used to feel pretty thick now pretty thin)

I guess I just want the ED to be sorted out more than anything, without surgery or an implant and more loss of size. I will be below average, I'm just barely average now at the moment due to the loss already.

Title: Re: Very bad situation
Post by: TonySa on January 31, 2018, 02:46:47 PM
Pentox, low dose daily cialis or viagra and VED/traction could all help.  You can have peyronies without a curve if you're losing length and girth.
Title: Re: Very bad situation
Post by: sonnyjim on January 31, 2018, 03:55:22 PM
I am currently taking Cialis 5mg a day and doing traction and manual stretching which I have been doing since this all started (November 2015) I haven't seen any improvement at all and my size hasn't even increased 1/2 a centimetre.

Starting to feel hopeless.

Not only do I have erectile dysfunction I have a smaller penis than I had before all of this happened. It just doesn't seem as elastic as it was before all of this and i don't know what to do. I want to regain spontaneous erections that I used to get and have strong erections again, not one's that I can physically bend. If I could get the erection strength I used to have I would probably see that 1/2 to 3/4 of an inch that I used to have but no amount of viagra or cialis can get me that.

How much of a difference does Pentox really make ?
Title: Re: Very bad situation
Post by: TonySa on February 01, 2018, 02:48:53 PM
It's hard to know how much the pentox is helping if you don't see improvements.  It may be keeping it from getting worse.  How many hours of traction are you able to do a day?  What device do you use.
Title: Re: Very bad situation
Post by: sonnyjim on February 01, 2018, 04:30:37 PM
I haven't started pentox yet im still trying to find a urologist who will give me it.

I'm using x4 labs and I get at least 4 hours of traction in a day. All I want is to be able to get a natural erection the same as before: is this unlikely to ever happen in my life again that is all I want to know.

I can't live like this, I practically have no life.

Do problems like this eventually get better over time does anyone know or am I basically looking at permanent impotence?
Title: Re: Very bad situation
Post by: TonySa on February 01, 2018, 08:47:21 PM
Yes, it can improve.  You can handle this.  Try to find a peyronies specialist.  Sounds like you may have stabilized but need to address the ED.  Have you tried l-argine or l-citrulline.  FT has great advice around ED specifically.
Title: Re: Very bad situation
Post by: sonnyjim on February 01, 2018, 09:37:37 PM
I have tried L citrulline and currently take 5mg cialis daily which still had no effect really.

I would like to regain my solid erections and hope they can come spontaneously again but things just feel so much more different. I don't seem to feel how I did before down there. I don't have much feeling in my penis anymore and it's something that is hard to describe.
Title: Re: Very bad situation
Post by: sonnyjim on February 06, 2018, 04:52:08 AM
Can anyone tell me whether their erectile dysfunction has ever gotten any better? I'm 29 years old and very worried that the rest of my life will be like this.

It's like a nightmare that I can't wake up from.
Title: Re: Very bad situation
Post by: PeetyPeet on February 06, 2018, 06:25:13 AM
Hi Sonnyjim,

I feel for you, I really do. With no answers, it feels like one is left out in the ocean without a paddle.

I haven't read through it all again, but it feels like some of your questions have already been answered earlier in the thread. it's hard to tell whether your ED will improve without knowing the real cause behind it, but statistically, cases of ED tend not to improve, at least not 100%.

I truly hope it does improve for you but how much exactly I don't think anyone on the forum will be able to tell you.

You have your rigiscan in april. I'd continue using VED until then. It sounds like traction and stretching isn't doing too much for you so perhaps discontinue those.
Title: Re: Very bad situation
Post by: sonnyjim on February 08, 2018, 06:51:11 PM
I will tell you what is the most psychologically devastating thing and ot isn't even that I have severe ED. It is the fact that my flaccid penis is now so small that I even try to avoid pissing.

I used to be quite proud of my size, I had like 4 and a half inch flaccid and 6.5-7 inches erect. Now my flaccid is so small I can't even tell it is there. It must be like 3 inches with 3 inch girth.

My erect size is now about 6 inches but I can barely even get erect so it doesnt matter that much at this point in time.

Will my flaccid size always be this pathetic now or is there any chance of me going back to how I was even if it takes years?
Title: Re: Very bad situation
Post by: sonnyjim on February 09, 2018, 09:40:22 AM
Is there any hope that even pentox could restore some function if it can actually reverse fibrosis like some people claim?

I wouldn't wish this condition on any man...
Title: Re: Very bad situation
Post by: sonnyjim on February 14, 2018, 03:38:12 PM
I have kind of accepted that I need to somehow die to stop this never-ending depression. I still can't believe this happened to me at the age of 29 it's so F^@$!ng cruel.

I pretty much lost everything that mattered to me even my now ex girlfriend will not even lift a finger to send me a message to see how I am that's how much of a disappointment I must of been seen as.

Before this I never worried about size or erectile dysfunction or any of that crap and now I just work and sleep and pray that I will wake up from this F^@$!ng nightmare but it won't happen.

What do I have to look forward to now? A life where I worry all day long if my girlfriend is happy with me or not or I can satisfy her what a load of crap this life is.
Title: Re: Very bad situation
Post by: TonySa on February 14, 2018, 04:40:35 PM
SJ, are you getting any counseling support for your depression as a result of this devastating disease?
Title: Re: Very bad situation
Post by: sonnyjim on February 14, 2018, 05:51:02 PM
No I just figured i would wait and find out whether it can be solved or not but no urologist will just straight up say "look there's nothing that can be done to improve your ED" it's all "oh its in your head" yeah it's in my head I take 200mg Viagra nothing happens, I get an injection into my dick and nothing happens.

I guess I am just waiting to see what can actually be done before I just end it. Everyone knows that I can't live like this, I can't be on my own, not forever. I need a purpose.

I have seen psychiatrists but its beyond their expertise. People don't have a clue how much this affects a person on so many levels.
Title: Re: Very bad situation
Post by: TonySa on February 14, 2018, 09:05:55 PM
SJ, you can and will find a solution to your ED, unless your depression gets the best of you.  Please seek out help and support.
Title: Re: Very bad situation
Post by: cheeznips on February 16, 2018, 12:30:50 AM
Check my history out. Ed does get better i've been feeling better and i had my injury on july 4th. But iv noticed iv been getting morning erections. Once u start getting morning erections youre pretty much clear of e.d, atleast physically. You just gotta wait it out. Once your nerves come back your e.d will go way. Im still numb'er than usual from my injury but im just hoping my nerves will come back
Title: Re: Very bad situation
Post by: sonnyjim on February 16, 2018, 05:46:37 AM
My injury happened in November 2016 so it's been well over a year.

Viagra and Cialis used to work and give me erections but now do nothing for me, don't even seem to have a fuller flaccid when I take them.

I'm hoping pentox can do something if I can actually get it prescribed but I haven't read anything about it helping with ED
Title: Re: Very bad situation
Post by: cheeznips on February 16, 2018, 10:06:38 AM
Did you fracture it or something? Are you not getting morning erections?
Title: Re: Very bad situation
Post by: sonnyjim on February 17, 2018, 09:40:44 AM
No morning wood
No spontaneous
No night time

Nothing.

Have to masturbate while on Viagra or Cialis and even then it never feels good I could honestly go forever without thinking about sex. Can't get hard or stay hard without porn and a lot of manual stimulation.

Seriously close to losing my crap I don't know how I can carry on like this it just feels so much different to how it used to feel.

I used to have a good size and always rock solid erections, woke up in the morning one day with pain and now this has gone on for over a year.

Lump or scar tissue goes around the shaft, like a ring but it's only on the bottom (corpos spongonosium?)

Hardly any sensation, flaccid penis is now F^@$!ng tiny compared to how it was before, erections I can bend even when I am at my hardest, white spots from lack of blood circulation on glans while flaccid and hard.

Honestly can't believe this is all happening to me in the space of 1 year. I used to have good sex with my girlfriend always kept her more than happy and now since I had problems for so long she left me like i was a piece of crap.
Title: Re: Very bad situation
Post by: LWillisjr on February 17, 2018, 10:02:22 AM
I'm sure you have read about implants on the forum. If all other options have been exhausted is this something you would consider from a competent surgeon?
Title: Re: Very bad situation
Post by: sonnyjim on February 17, 2018, 11:08:32 AM
I'm not keen on having an implant at the age of 29 really I think i would choose death before that...

Plus I hear that you lose more size, I have already lost a bit and I didn't start out big (6.5-7)

Is there any hope that pentox would do much at this stage I am I kidding myself?
Title: Re: Very bad situation
Post by: Hrvat21 on February 17, 2018, 12:14:15 PM
Implant isn't do bad. You can get erect on demand and be hard as long as you like. If the pills don't work, i think it's pretty close to having a normal dick. I hear you can restore some or all of your size using traction and VED and then do the surgery with a fine surgeon for minimal loss. And with consistent cycling you can probably restore lost from surgery/even gain more size than before surgery.
Title: Re: Very bad situation
Post by: Paolo on February 17, 2018, 02:11:35 PM
If I was you I would demand through the NHS a full blood test to establish your hormones are all within range for your age, particularly of course Testosterone and also Thyroid, this I know will be a complete hassle, taking time of work, appointments etcetera. IMO men are suffering an epidemic of low Testosterone in the Western Hemisphere, it is no coincidence that sperm counts have fallen repeatedly in the last 30 Years.

Human Reproduction Update, has found that sperm counts among men in the United States,, Europe  have declined by about 50 percent in the last 40 years.

Sperm counts in South America, Asia and Africa did not find a significant decline

Your symptoms, no morning wood, low desire, no 29 Year old IMO should require Viagra or Cialis, all red flags for something wrong.

None of us here are Doctors, do something about your situation, please.

Low Testosterone will literally F^@% you over   :( :( Paul
Title: Re: Very bad situation
Post by: sonnyjim on February 17, 2018, 03:57:07 PM
That's the thing though: cialis and viagra don't work for me anyway either. I literally can't feel blood moving through my penis at all like the way I used to it just hangs lifelessly andmuch smaller than before like I have caused damage and it has healed like that.

Title: Re: Very bad situation
Post by: cheeznips on February 18, 2018, 02:47:06 AM
i think you and me are in the same boat. after my injury I've lost a lot of sexual function, penis is almost completely numb, dead sex drive, no longer feels good. I pretty much just do it to release stress. but, the action itself is not very enjoyable. i think the problem is that we injured our nerves. which is the reason why u might not be getting morning erections. i've been getting some morning erections but they don't fill out like they used too. i'm guessing that has to do with the scar tissue and my nerves. my advice to you is to just be patient, maybe your nerves will come back. And tbh getting a implant in 2 years wouldn't be a bad idea too if nothing improves. But, just be patient nerves grow back very slowly. i know how you feel man im in the dumps too. But, just don't think about it. Don't touch your dick unless your gonna masturbate and go on living your life until you get a tingle down there. i would be my testosterone checked though.
Title: Re: Very bad situation
Post by: sonnyjim on February 18, 2018, 10:54:51 AM
Would a nerve injury make my penis shrink or is that caused by the scar tissue?

I could of lived with the ED if I still had my normal flaccid size but F~@<, it feels like nothing is there anymore and it's just completely lifeless.
Title: Re: Very bad situation
Post by: TonySa on February 18, 2018, 11:07:41 AM
SJ , what are you Doing to overcome this? 
Title: Re: Very bad situation
Post by: sonnyjim on February 18, 2018, 11:38:34 AM
Coq10, cialis 5mg which doesnt do crap, I citrulline, dmso and iodine, vitamin e since beginning, I carnitine, eating well I have a very active job and I'm in good shape.

Manual stretching and VED

basically everything I can and still nothing works it feels so much different down there it's beyond depressing walking around with a shrunken dick and ED
Title: Re: Very bad situation
Post by: TonySa on February 18, 2018, 11:42:51 AM
Good you're taking action.  You might try to shift from it isn't doing crap, to this takes time and today I'm doing what needs to be done for it to improve.  What does your peyronies specialist recommend?
Title: Re: Very bad situation
Post by: sonnyjim on February 18, 2018, 11:48:17 AM
Nothing as they haven't even diagnosed me yet strangely the mri and doppler both were normal even though I can physically feel parts of my penis have lumps or feel torn like damaged.

Oh and also the injection didnt work.

I am seeing another urologist tomorrow. Mr Raheem.
Title: Re: Very bad situation
Post by: cheeznips on February 18, 2018, 11:52:11 AM
Let us know what he said? Also what was the injury? What happened?
Title: Re: Very bad situation
Post by: sonnyjim on February 18, 2018, 11:58:42 AM
I don't even know but I woke up one morning in a lot of pain and immediately noticed by dick has shrunk to like, ridiculous size and was cold.

Could of been an injury during sex as she was on top and I slipped out but it didn't hurt at the time, I don't know.

I couldn't even touch it at first it was so painful but after about 4 or 5 months the pain died down I could feel there was like a ring going around the shaft on the underside (cs)

Apparently the MRI ruled out peyronies but then what is it? I thought any scar was peyronies?

I now have severe ED and shrinkage. Cannot get any worse than this and i definitely couldn't have any sort of a sex life unless things improved massively. I need a miracle.
Title: Re: Very bad situation
Post by: cheeznips on February 18, 2018, 06:53:23 PM
It sounds like you may have had a fracture. I'm having the same symptoms your having. My main injury was at 19 after 1 1/2 years it got a lot better and i recently re injured myself. If you want more information about my case the link is in my signature. I think the most we can both do is to just be patient and hope that the nerves come back? is the underside of your penis incredibly numb? if so, then yeah. same injury. Just be patient and probably take daily Cialis to try to push out as much plaque in the corpus cavernosum or corpus spongiosum, im really sorry that this has happened to you.  i took a Doppler 2 months ago that didn't catch the injury either. Don't do any more damage to your penis since your head isn't in the right place, and if you masturbate please be careful and be gentle. Right now im kinda scared that i damaged my urethra or corpus spongiosum my urologist is advising this i see a urethral specialist about the problem. I know what you mean though right after the injury from sex my urethra was hurting so bad that i caught an std. which obviously came back negative. my sex drive is in the shitter. One thing iv noticed is that the only thing that can help the nerves is time. and, im pretty freaked out because a lot of people on this forum said that nerve injuries don't always heal. but, i will pray for both of us, since it's the only thing we can really do. be patient though.
Title: Re: Very bad situation
Post by: sonnyjim on February 19, 2018, 03:01:50 AM
I have pretty much lost everything that was inportant to me and it's still going on.

Title: Re: Very bad situation
Post by: cheeznips on February 19, 2018, 02:33:41 PM
i know how you feel man, this morning i woke up so missed that i couldn't feel anything i started hitting my bed. but, then again iv done this before. I've missed my class because i just didn't feel good. I guess i'm really lucky to have a gf that understands this. If you think about it maybe it's a good thing that you and your gf broke up. I mean if she's just with you because you were a F~@< then wouldn't she leave you eventually? For a lot of people they get bored with there partner and look else where. i'm gonna go see another doctor soon to see if i have a urethral stricture or scar tissue in my urethra. I'm gonna ask him if he think i had a corpus spongiosum, urethra fracture. btw, do you have any indents on the shaft of your penis?
Title: Re: Very bad situation
Post by: Tychy on February 19, 2018, 05:50:21 PM
Trouble peeing, pain while peeing or ejaculation, reduced urine or ejaculate velocity, downward curve. These are typically the symptoms of urethra damage. Usually does not impair blood flow to the penis. Thing is, cutting urethral scar tissue has high rate of getting scar tissue again. Anything inserted may trigger CPPS or actually cause scarring. That's why urologists in Germany are very conservative when it comes to shoving cams down there.

AFAIK, nerves to the glans go from the side of the penis into the body. And besides functional repair of curvature or stricture, I doubt they are able to repair nerve damage :/
Title: Re: Very bad situation
Post by: cheeznips on February 19, 2018, 11:31:37 PM
Yeah i was having alot of pain during urination but not anymore now its just pretty much numbed out. I dont really know anymore im just really sad, but i keep a fake smile on so ppl dont notice. Im really kinda just hoping this isnt permanant
Title: Re: Very bad situation
Post by: PeetyPeet on February 20, 2018, 03:36:46 AM
Quote from: LWillisjr on February 17, 2018, 10:02:22 AM
I'm sure you have read about implants on the forum. If all other options have been exhausted is this something you would consider from a competent surgeon?

I know people mean well when they suggest an implant - they certainly seem to have improved and grown in popularity in recent years - but as I've said before on this thread, in the UK you aren't eligible for an implant (or indeed any treatment) unless you have demonstrated conclusively that your ED has an organic, non-psychological cause. Unfortunately, the ineffectiveness of PDE5 inhibitors, longevity, severity and consistency of symptoms, along with patient testimony aren't considered sufficient evidence. Something has to be found on the scans and/or you already have a condition documented in your medical records which is associated with ED (such as diabetes).

If a patient doesn't fit in this box then - without any further investigation - they default to having a psychological problem.
Title: Re: Very bad situation
Post by: PeetyPeet on February 20, 2018, 04:03:36 AM
Sonnyjim, I understand that you have the NPT test in April. Until then I strongly suggest you continue to use VED daily and continue with the low dose cialis even if it seems it's not doing anything.

It'll be interesting to see how your NPT test goes. They set the threshold for normal pretty low (i.e. you don't have to demonstrate much functionality for them to consider you normal) but there's a chance that you will demonstrate not having any nocturnal erections and therefore be eligible for further treatment.
Title: Re: Very bad situation
Post by: JS1991 on February 20, 2018, 05:43:58 AM
Sonnyjim, I agree with PeetyPeet: use the VED and Cialis until then to prevent any further damage. Have you ever looked into stem cells? They work for some with ED. I'm going to go for treatment myself.

Check this page out for the current status on Stem Cell therapy for ED: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209555/

And you can check out our own "Stem Cell" thread in the "Develepmental Drugs & Treatments" subforum.

Lastly, keep your mind positive. It really does have an effect on your ED.
Title: Re: Very bad situation
Post by: cheeznips on February 20, 2018, 02:11:30 PM
Ive got some good news. I woke up with a really hard erection today. Still numb though, but that makes me feel so much better. Hang in there sunnyjim.
Title: Re: Very bad situation
Post by: Paolo on February 20, 2018, 02:18:09 PM
That's great to hear, hope some feeling returns soon  ;)
Title: Re: Very bad situation
Post by: JS1991 on February 20, 2018, 06:11:36 PM
cheeznips, that is amazing news I'm so happy for you!! Great to hear, I hope things continue to improve! Approximately how long has it been since your injury, by the way?

Sonnyjim, hang in there! You couldn't be in a better place (here) in terms of support and guidance (in my opinion).
Title: Re: Very bad situation
Post by: cheeznips on February 21, 2018, 12:51:09 AM
well i had the second injury july 4th 2017, so 7 months? I'm still 95% numb down there but the fact that i'm getting morning erections is a good sign. I'm guessing i injured the corpus spongiosum and/or urethra. i need to see another urologist to determine whether i have a urethral stricture or not because when i urinate i have to push it out and i don't feel my urethra when i urinate. I gotta see that urologist and i gotta be patient.

sonny be patient, my friend. sooner or later you will start getting morning erections and then your nerves should start coming back. If you ever feel like venting you can vent here i actually come by this read quite a bit.
Title: Re: Very bad situation
Post by: sonnyjim on February 25, 2018, 09:20:51 AM
So I had my appointment with Dr Raheem.

He could not feel any lumps which confuses me because for me they are easy to feel but it also depends on what atate my penis is in: if completely flaccid and in the lifeless stage it is in 99% of the time they are harder to feel, the moment a little bit of blood is there you can feel everything.

So once again I didnt really get anything out of the appointment which I paid a lot of money for, privately. Also I have noticed that the main lump which is in the middle of my penis and the one that must be causing most of my problems feels like it haasgotten bigger and the tissue around it feels weird like torn.

Also I have new weird sensations in my penis like a tingly sensation coming from where that tissue feels different.

I honestly feel like I am never going to feel normal again and this ED is never going to be fixed.
Title: Re: Very bad situation
Post by: sonnyjim on February 25, 2018, 09:27:47 AM
What can I actually do to improve this situation on my own? I feel like I am sitting waiting on a miracle to happen while my penis just continues to deteriorate in front of me and I keep finding new hard spots that I havent felt before it is driving me crazy.

Will my penis ever be smooth again or will I just have to accept this ED and having a dick with lumps and no sensation. Nothing is pleasurable to me anymore and it breaks my heart because last year my girlfriend and I had good sex and now she is gone because of this.
Title: Re: Very bad situation
Post by: TonySa on February 25, 2018, 09:56:39 AM
Is Raheem a peyronies specialist?
Title: Re: Very bad situation
Post by: sonnyjim on February 25, 2018, 10:12:10 AM
No idea, I think so.

He told me that if nothing shown on the mri I had at uclh which was last year, I do not have peyronies.

Still doesnt explain anything to me really because my penis is lumpy for one, feels very different less sensation, ed, difficult to ejaculate because nothing feels pleasurable anymore and im constantly turtled up.

Plus these white spots on my glans must be an std rather than lack of blood flow. Im confused...

He said I should use a vacuum pump, 5mg cialis daily and have shockwave therapy, I have already been taking cialis and doing vacuum therapy but it is doing nothing.
Title: Re: Very bad situation
Post by: Sadguy on February 25, 2018, 10:25:05 AM
Try injections
Title: Re: Very bad situation
Post by: sonnyjim on February 25, 2018, 12:22:18 PM
Is there nothing else than can be done to reduce scarring?

The idea of putting an injection in my dick everytime I want to have sex doesnt really appeal to me that much.

Im 29 years old...

Is it possible that these lumps were already there or maybe VED has made it worse? This new sensation in my dick throughout the day is driving me crazy I just want to feel like I have a normal penis again.

VED doesnt even give me an erection but apparently it is good for something. What, I do not know.
Title: Re: Very bad situation
Post by: Sadguy on February 25, 2018, 12:34:06 PM
If the Ved or viagra does not give you an erection, try other brands of pills maybe like cialis or levitra and if the pills do not work the truth is that there are only two ways injections or implant, I am in the last one probably and I am 26 years old

You can also try prp or things like that or shock wave but in my opinion they do not work well, just my opinion
Title: Re: Very bad situation
Post by: sonnyjim on February 25, 2018, 05:38:27 PM
So there is literally nothing I can do now? Just sit around?
Title: Re: Very bad situation
Post by: Tychy on February 25, 2018, 06:21:58 PM
Go full blow supplements. CoQ10, Citrulline, Omega3, Cialis, Pollen, Vitamin D + high K complex, topical Diclofenac, Magnesium, Quercetin, Bromealin, Sulphoraphane. I was shoveling pills every day in my mouth.

Heat up your penis with a hot washcloth before pumping. Try using a vibrational device at the glans and see if that triggers anything.

I was in for 18 months of hell, no satisfying erections, hourglassing, "this is not my junk oh God", tried nofap for two months, nothing worked. Recently I was able to have sex again. How?
The F^@$!ng depression and anxiety with this condition killed everything. Went to get Lexapro, three weeks of hell again with side effects, trouble peeing first three days. Then it got better. I was more solid, and I started caring less about those itches and pain episodes, because they just happen. Like a broken knee that hurts in cold weather, my penis hurts after some actions. It goes away. Some days where erections suck? So be it. Pain while ejaculation? It's only a day.

Don't underestimate the effects of your subconscious. If you are depressed or anxious, your junk won't work. You are in fight or flight mode. You need to get away or combat something that isn't possible to resolve for you at the moment. But your endocrine system does not know that. It may run into hypervigilance mode where every small itch hurts a thousand times.

Consider getting therapy and medication. I was crying when going to the pharmacy to get the pills, because it felt like giving up, but it's not. It's a solution to the endocrine berserk run that's out of control or for your neurotransmitters in depression. If you stand a strong position, fighting and waiting for the chance is possible. (The only side effect down there may be mild anorgasmia. It usually does not impair erections, only the climax.)

Be positive for your test. And don't ignore the implant options. They are good nowadays. Don't give up before you try. It's up to you to give up WHEN you run out of options. Funny thing about this world is a magnitude of options ;)

Stay strong. Cry when necessary. Build a social support net. Ditch everyone that measures your value as a human by your penis.
Title: Re: Very bad situation
Post by: diehardpatriot on February 25, 2018, 08:20:13 PM
Sonny Jim. The ability of the doctors who did your ultrasound should not be ignored. If they're not good with peyronies or skilled at treating and diagnosing it. They can very easily Miss it . To me, it sounds like you may have scarring in the corpora. But you don't know because you don't know if those doctors are to be trusted. This crap is not in your head man. If the injection didn't work, then that's a sign there's something physically wrong. But what's in your head CAN make things worse than they have to be. IF I were you, keep taking the supplements And oral stuff. I can't beliehe no one will prescribe you pentox, that's ridiculous. Many order off river pharmacy so if you can afford it I'd do that. Take 5mg cialis along with pentox and coq10 ALC and L arginine. These CAN actually reverse scarring and Have in some cases. Keep up the VED, although it seems like it may not help ,  its worth it as well man. You gotta throw everything you can At this. Anything with a chance to work is worth it in my opinion. I understand how stressful this can be man. I'm going through my own mental issues dealing with this. Stay strong man, if you're able to live a productive life and are not in constant physical pain or agony be grateful for that. There are many people in the world with conditions that do not allow them to even enjoy a normal day, or work, or be independent; much less have sex, that's the last thing on their mind. When you deal with things like this. You need your loved ones support. If you have anyone you trust, vent to them. I know it's embarrassing, but my father, best friend, and girlfriend have listened to me vent and their support has helped me greatly. I'd try the shockwave therapy if it's free man. IF it cost money, idk. Maybe save up some money to fly out to the US so you can see a renound specialist like dr lue or Gelman or gelbard to get a second opinion on the scarring situation. And to say youd rather take death than an implant, why? Go on FT and do research on the implants. IMO an implant is better than living a whole life without sex . But, an implant should be the very last resort. Anyway, I hope this helps you. Good luck man. Don't let this f*** you up mentally. I went through a 2 week period where my head was chewed spit out then chewed again and vomited out. I had my first ever anxiety attack. I'm only 17 and never have dealt with anything of this magnitude. Keep fighting
Title: Re: Very bad situation
Post by: NeoV on February 25, 2018, 10:30:37 PM
Well said guys, not getting a prescription for pentox is annoying, I went through that whole hell as well. But pentox is NOT needed for a recovery.

Yes VED can make lymph swelling very bad and make your penis bulging with lymph vessels. Just rest it and continue with traction, or pump VERY lightly with the VED. It's very very unlikely VED is making your Peyronie's worse.

You can do everything now, besides surgery and invasive treatments. Those are not the answer anyway, and only the final end stage last resort. This is something you have to understand, as painful or weird as it is.

Your treatment starts now, and you do it by yourself. Physical therapies, drugs, supplements, life style changes. It's really brutal, but you have to let go and work from where you are and what you have. I hate it too and I feel for you. If I could rewind time I would have started fasting immediately and eating flawlessly. I just had no idea what was going on back when it all started.
Title: Re: Very bad situation
Post by: sonnyjim on February 26, 2018, 07:07:32 PM
[Full quote removed - Read the forum rules on using "Quote"]

Scarring in the corpora?

What can I do to help that? Will any of these supplements reduce the scarring or what else can I do?

I am just trying to get back to normal, or close to it, but even that seems so far away.

I guess this is the worst I can get though, fully impotent.
Title: Re: Very bad situation
Post by: cheeznips on February 27, 2018, 03:09:32 AM
Tingly senseation is good news its a sign nerves are healing. I read it a while back.
Title: Re: Very bad situation
Post by: sonnyjim on February 27, 2018, 05:33:57 AM
It feels like it could also be new damage

From VED since it only started after I started VED.

I really hope not
Title: Re: Very bad situation
Post by: cheeznips on February 27, 2018, 06:07:19 PM
https://jamanetwork.com/journals/jamaneurology/article-abstract/570603?redirect=true

It is important to differentiate this tingling from the pain sometimes produced by pressure on an injured nerve. The pain is a sign of irritation of the nerve; tingling is a sign of regeneration; or more precisely, tingling indicates the presence of young axons, in the process of growing.

wait a 7months-year or so. let the nerves heal. It's a good sign.

i'm hoping my penis will tingle and my nerves will regenerate. I've been in such a bad place. yesterday i tried to have sex with my gf and it took forever to get up and i came right away. absolutely no feeling in my urethra or corpus spongiosum. it's really rough because it makes me think that from my last sexual injury making me permanently impotent it really gets to you. But, in the morning me and my gf had sex twice, even though i had no feeling down there. I really hoping to god that my nerves will come back down there. It make sense if the nerves are numb how can your penis react to that feeling and create an erection.
Title: Re: Very bad situation
Post by: NeoV on February 27, 2018, 06:15:06 PM
VED can cause a bad tingling, which is definitely not regeneration at least from my experience. I have had nerve regeneration, but when the VED was damaging my lympatic vessels and my insulin resistance was bad, my nerve DAMAGE related pain and tingling was terrible. What cheezenips says is very true, but I wouldn't expect any regrowth at a time like this. ><

Men with insulin resistance have Peyronie's, there is some crossover, and your penis and hands and feet will likely tingle and hurt until they go numb. This can be reversed with a rigid diet.
Title: Re: Very bad situation
Post by: cheeznips on February 27, 2018, 06:42:17 PM
=/
Title: Re: Very bad situation
Post by: cheeznips on March 02, 2018, 08:50:44 PM
How are your erections coming along? Any improvment?
Title: Re: Very bad situation
Post by: sonnyjim on March 03, 2018, 07:16:53 PM
Nope, not at all...

I have been keeping up with cialis 5mg daily and VED but not really seeing any changes yet.

Another thing I have noticed is that when I kegel, literally nothing happens, whereas I used to get a feeling of blood moving in my penis. It has been like this for about 6 months.

Its like a nightmare especially when nothing can be seen on ultrasound or mri sp basically I am completely impotent and there is nothing any urologist will do to help me.
Title: Re: Very bad situation
Post by: cheeznips on March 04, 2018, 03:38:44 AM
damn... im sorry that your not getting erections. i've been getting erections but i cant really feel anything on the underside or urethra. im with you on the kegel part. When i flex my kegel nothing really happens i dont feel like blood is rushing in down there either. have you ever asked your doctor about urethral strictures? maybe you have a stricture. Are you currently working now?
Title: Re: Very bad situation
Post by: sonnyjim on March 04, 2018, 04:21:19 AM
I am working yes, about 70 hours a week because if I sit at home I will definitely go mental.

Are you getting erections without cialis? Is it a good sign getting erections even with 5mg cialis?

After this length of time (1 year 3 months) is it ever likely I will recover from this?
Title: Re: Very bad situation
Post by: cheeznips on March 05, 2018, 03:47:32 AM
what kind of work are you in? yeah i'm getting erections without Cialis, although they don't really last long though. how old are you 29? yeah, i think you can still heal. keep taking the daily Cialis to cut that plaque away from your penis.
Title: Re: Very bad situation
Post by: sonnyjim on March 07, 2018, 03:16:40 PM
Construction.

Do you actually believe Cialis 5mg daily will do anything to reduce whatever scarring I have to the point where I can get normal erections and sensation back ? Even after this length of time?

Everything feels hopeless right now, sex used to feel so good now I don't even want sex anymore. Ots like I have no libido at all and that cant be diet or hormone related as I am healthy, eat right and dp a very physical job.

Maybe the scar tissue is deeper inside my penis and thats why it feels so different to how it did before, like there is no sensation and no blood flow at all.

Title: Re: Very bad situation
Post by: diehardpatriot on March 07, 2018, 04:42:28 PM
Even if you don't get rid completely of the scarring cialis is your best bet to have any type of healing. Take it man, you have nothin to lose . I'd say maybe even 10 mg cialis. When your dick isn't working, of course libido is gonna fall. Because you know you can't have sex, why would you want it? I'd still get your testosterone checked however, just to make sure. See a GOOD urologist who can track your progress via ultrasound as you take the cialis over time.
Title: Re: Very bad situation
Post by: sonnyjim on March 07, 2018, 06:20:53 PM
The thing is: 5mg cialis, 10mg, 20mg 100mg viagra dont give me full erections without me bringing myself to erection from flaccid with lots of manual stimulation even when im having sex with someone I find attractive so what positive effect is it going to have if any?

6 months ago (like 6 months after the 'injury' or whatever it was) viagra actually worked but gradually it has got to the point where it doesnt even give me a semi.

Will it still have any effect for helping my penis return to a somewhat normal state?

What else can I do I am practically almost fully impotent and I dont even have the same feelings in my penis that I used to have it all feels different like I have no dick at all.

How so called urologists cannot help me is a fuckibg joke.

What would you guys recommend me to do?
Title: Re: Very bad situation
Post by: Werther on March 07, 2018, 09:30:55 PM
It looks like you have venous leakage, based on your symptoms. If that's the case, at current state of medicine there's only the implant; almost everybody here recommend to avoid veins surgery (I even opened a thread here to see if some positive experiences were reported by any users, but I've got no responses).

You should check your EDV and RI values of your doppler: if EDV values are above 5 cm per sec and a RI values are less than 0.8, then you have venous leakage.
Title: Re: Very bad situation
Post by: diehardpatriot on March 08, 2018, 12:01:03 AM
Hey sonny. Take ALC, it's good for nerves (you say you can't feel anythingh). Even if the cialis can't give you full erections, the objective is to get rid of scar tissue. If you aren't feeling any pain. I'd say get a ved and use traction as well. Throw everything you can at this. The cialis in your case is for increased blood flow in hopes of cleaning out scar tissue. At the very end of this, if NOThing works and all else fails. There is one last option, an implant. Do your research on them, maybe it can help you find peace of mind knowing if all else fails you don't have to live your life impotent. You'd still be able to have a full sex life and have children. But first, exhaust all other options. Take my advice Man. good luck man, in short

-GET CIALIS, PENTOX, ALC, COQ10, And L ARGININE
-GET A VED AND TRACTION
Title: Re: Very bad situation
Post by: Paolo on March 08, 2018, 04:20:42 AM
sonnyjim, have you tried any supplements, and if so have you taken any regularly??
Title: Re: Very bad situation
Post by: sonnyjim on March 08, 2018, 04:32:25 AM
I have taken coq10 and l carnitine (sp?) but on and off.


The only thing I cant get is Pentox, can I still improve without it? No urologist will prescribe it to me...



Title: Re: Very bad situation
Post by: Paolo on March 08, 2018, 04:50:13 AM
sonnyjim, I am going to PM you with a few things  :)
Title: Re: Very bad situation
Post by: Werther on March 08, 2018, 12:15:48 PM
I think that supplements aren't going to do anything for your ED. If there is actually fibrosis, you can't cut it off (take liver cirrhosis as an example: if its cause was hepatitis, the infection can be eradicated but, nonetheless, the organ has to be substituted, because it has already gone). And by the way you keep obsessing over this whole peyronie thing, but two dopplers didn't detect anything: if there was fibrosis (wheter in the tunica or in the corpora), it's impossible that it wasn't spotted. What did your private doctor tell you about the lumps that you feel with palpation? A coscientious clinician should have an explanation for this and he should have told you what these lumps are if they're not scar tissue. If you don't have any scar tissue, then all supplements are less than useful, because you don't have (and probably never had) any inflammation and these things can at most help with that, but they do little to nothing for erections (and when they do, it's just an indirect effect, because inflammation is the cause of the ED).

I don't want to tell you that your ED isn't organic, but you first have to understand what's actually going on. You can't just assume that you have scarring if it wasn't confirmed: then you end up taking a whole bunch of supplements that you don't even need and you just waste your time.

I recommend you again to look at blood flow values reported from your previous dopplers (EDV and RI particularly); if it looks like they're in the normal range, you could push for having a cavernosography, which is a more precise test than doppler for venous leaks' detection.

Only then you'll know what the problem is and you can behave accordingly to that.

Good luck.
Title: Re: Very bad situation
Post by: Jack1909 on March 08, 2018, 12:58:38 PM
Explore the emerging field of regenerative medicine before even think of getting an implant. Don't want people who choose implant today will be regret it in a couple of years...
Title: Re: Very bad situation
Post by: cheeznips on March 08, 2018, 01:08:25 PM
yeah sonny i totally feel you. My sex drive is plummeted too. sex doesn't feel as good it used to. i too feel completely impotent at times. I'm pretty sure both of us injured/fractured the corpus spongiosum along with the nerves. I do feel like you can recover, i guess you maybe need more time. Maybe full sensation wont come back, but maybe it'l get close little by little and you wont even notice it, until you get boners again. I do feel that you should still be taking the Cialis daily. have you asked your urologist if he thinks you have a venous leak? have you gotten your testosterone checked? i would check these things. every morning when i wake up im reminded how numb i am, even if i do wake up with an erection. It really sucks. In the end you can always get a implant too. I've done some Reddit searches and the post iv'e looked at all the people were really happy with them. Not that im saying that you need it right now, but its always an option. But, its an expensive option. I've come to understand the fact that il never be a sex god again, but at least i can still get erections. And, also just to let you know i don't get full erections without manual stimulation either.

I'm currently in a situation where i'm just to scared to work and be outside due to anxiety attacks because my penis is extremely numb. Idk, i just kinda get them. Like that annoying hard flaccid mixed in with numbness is killer. For the longest time i could not wear pants just because my penis felt so uncomfortable. Now i'm too afraid to get internships or jobs, because I've been fired in my past jobs due to my emotional state. a couple years back when i first injured my penis i was in this depressed state all the time. And no matter how hard i tried to hide it, i guess my sadness bled through. I'm still like that now but i guess I've gotten better at hiding it. I also have this problem where i cant sleep because i guess my body is afraid to sleep because how i will feel in the morning as soon as i wake up. man, the mornings are the F^@$!ng worst, but the moment i stand up for 30 min and get some blood flowing into my penis. It becomes alright.

I've already come to the conclusion that i'm not gonna kill myself. i have a girlfriend that loves me and understands me and my situation. I guess i'm a pretty lucky guy. Even if she is kinda crazy. I'm pretty sure if i did kill myself my gf would probably follow me, and maybe my mom too idk. But, i figured that if i'm not gonna kill myself i might as well try and survive. I got back into school and im a year short of graduating. And i recently re injured my self but and I've thought about it again but i don't think i'm gonna do that. I understand dude, totally.
But, your making money and you do have other options in the end such as an implant. so dont forget.

heres the post on reddit

https://www.redditdotcom/r/IAmA/comments/stmu0/on_my_very_first_sexual_encounter_i_broke_my/

(gotta replace the dot with an actual .)
Title: Re: Very bad situation
Post by: sonnyjim on March 10, 2018, 10:56:12 AM
I have recently bought these supplements:

COQ10
Acetyl L Carnitine
L Citrulline
Propolis
Gingko Biloba
Vitamin E

Out of all of these, which would be the best for me to stick to as I cannot afford to spend this much money on supplements every month.

Which ones should I keep
Title: Re: Very bad situation
Post by: TonySa on March 10, 2018, 12:04:11 PM
CoQ10 for sure
Title: Re: Very bad situation
Post by: sonnyjim on March 10, 2018, 02:22:39 PM
I am keeping the COQ10 but can't decide what supplement would help me the least out of these. I can't afford all of them and I'm not sure taking all of these would actually help me.
Title: Re: Very bad situation
Post by: Paolo on March 10, 2018, 03:06:53 PM
IMO following;

COQ10
Acetyl L Carnitine (with Alpha Lipoic Acid)
L Citrulline
Propolis
Gingko Biloba
Vitamin E

For libido boosting effect Maca powder, 3G per day, it's cheap but after 3 weeks needs to be cycled to maintain effectiveness  :)

Let me know if you want cheap suppliers
Title: Re: Very bad situation
Post by: sonnyjim on March 10, 2018, 03:29:38 PM
I need cheap suppliers but I am in the UK.

I bought it all from Amazon and it turned out quite expensive. Is Vitamin E no good?
Title: Re: Very bad situation
Post by: Paolo on March 11, 2018, 04:47:30 AM
sonnyjim, I know you are in the UK, so am I, I will PM a message  :)
Title: Re: Very bad situation
Post by: sonnyjim on March 11, 2018, 07:05:05 AM
As I cannot get a prescription for Pentox will any of these supplements actually improve or stop this from progressing?
Title: Re: Very bad situation
Post by: sonnyjim on March 11, 2018, 03:03:33 PM
Also I doubt I am in the acute phase now after a year so will these supplements still do anything ?
Title: Re: Very bad situation
Post by: PeetyPeet on March 12, 2018, 05:10:05 AM
I'm going to be controversial and say that I believe the benefits of dietary supplements and anti-oxidants are overstated. Sonnyjim's and my symptoms and situation are rather similar so it's worth noting.

I've been round the block with supplements but the ones from which I've gained the most benefit are L-arginine/L-Citruline and Alpha Lipoic Acid. I have to take them in pretty high doses to see any effect. Neither have had any permanent benefit however I do believe they help with blood flow and therefore help prevent my ED getting any worse, if not better.
Title: Re: Very bad situation
Post by: Paolo on March 12, 2018, 05:23:19 AM
PeetyPeet, that's no controversy regarding supplements, that is exactly what they are, supplements, however  :-\ :-\
Who can truly say they have a good to very good diet with modern food temptations around every corner. Modern farming methods as well leave a lot to be desired, profit comes before good practice and using best ingredients. As a rule if you can buy and make food (time permitting) yourself then this is always going to be good for overall health. I am somewhat a believer in Keto diet, as is member NeoV but it is a very hard diet to do.

And let's not forget the number one thing for overall health, that would be exercise, fast walking, rowing, jogging, whatever is your poison, so to speak  :)
Title: Re: Very bad situation
Post by: sonnyjim on March 12, 2018, 02:48:24 PM
It kind of feels hopeless I mean if it isn't Peyronie's what is it? I have no sex life at all now and a year ago I was able to have sex 4 or 5 times a day and still be horny. Now I don't even feel like a man.

The main worry as well as being impotent is that my flaccid size is about half the size it was last year.

This is definitely not psychological something has definitely happened.
Title: Re: Very bad situation
Post by: PeetyPeet on March 12, 2018, 06:15:43 PM
Quote from: sonnyjim on March 12, 2018, 02:48:24 PM
if it isn't Peyronie's what is it?

It's a condition that the docs don't know how to assess nor diagnose so in the absence of this knowledge they default to it being psychological.

Title: Re: Very bad situation
Post by: sonnyjim on March 12, 2018, 10:02:20 PM
Are you being told your issues are psychological as well?

There must be something we can actually do.
Title: Re: Very bad situation
Post by: PeetyPeet on March 13, 2018, 03:17:04 AM
Quote from: sonnyjim on March 12, 2018, 10:02:20 PM
Are you being told your issues are psychological as well?
Yes, in the absence of 'hard' evidence of a physical problem, it must all be in my head apparently. My patient testimony and long, consistent history do not count it seems.

Quote from: sonnyjim on March 12, 2018, 10:02:20 PM
There must be something we can actually do.

The blunt answer, is no, there isn't anything we can do. We could try to have the scans / tests again but my guess is the results would be the same because the tests are inaccurate and / or predisposed to showing you as healthy.

These problems need to be addressed in a different way.....hence my documentary film which I'm slowly making progress with. NeoV has recently made a youtube channel discussing peyronies and penile health. I think it's excellent. Raising awareness like this is our best bet of making changes to approaches and attitudes to male sexual health.
Title: Re: Very bad situation
Post by: sonnyjim on March 14, 2018, 11:22:38 AM
So it is impossible for an MRI and Doppler to not detect scar tissue? So I do not have scar tissue? What are these hard lumps then and why is my sex life basically over and what was the pain I had for like 6 months that all of a sudden turnt into numbness?

Title: Re: Very bad situation
Post by: TonySa on March 14, 2018, 03:14:25 PM
I would think very unlikely that both an MRI and ultrasound/Doppler wouldn't detect plaque.  Perhaps your issue is the hard flaccid and the treatment protocols for that are best: see NeoV's post and others on supplements as well (MACA, ACL, etc.)
Title: Re: Very bad situation
Post by: sonnyjim on March 14, 2018, 03:43:26 PM
So what could the hard lumps be? They don't move or change no matter what I do and I also have strange sensations and can't even get erect using a vacuum pump: is that normal? Plus pills do not work: could a pelvic floor issue or hard flaccid cause all of this? Surely not?
Title: Re: Very bad situation
Post by: cheeznips on March 15, 2018, 06:36:44 AM
I mean my last injury I actually heard A crack and I definitely injured myself but still nothing showed up in doppler.
Title: Re: Very bad situation
Post by: sonnyjim on March 15, 2018, 10:18:50 AM
I don't know what to think because some people are saying no, both tests can't be wrong but other people are saying they have the same issues as me and neither test found anything.

I don't believe I have Peyronie's as I was told by urologists it doesn't come without a curve or bend but apparently you can still have Peyronie's depending on where the scar tissue is it won't cause a bend.

I just want this crap to get better I can't live like it and I'm sick of being told it's all in my head. I wouldn't of lost everything that made me happy if it was. And pills would work still.
Title: Re: Very bad situation
Post by: cheeznips on March 15, 2018, 02:03:44 PM
If you have any dents or waisting or lumps in your penis it's probably peyronies. Pegronies is actually just scar tissue/plaque. Alot of times it doesn't cause e.d. I think our problem is more neurological.
Title: Re: Very bad situation
Post by: sonnyjim on March 15, 2018, 03:42:09 PM
I can't get a diagnosis so I can't get pentox or anything that could actually help me. Can this clear up without pentox or are all of these supplements just a waste of time ?
Title: Re: Very bad situation
Post by: PeetyPeet on March 15, 2018, 05:14:26 PM
Purely based on my own experience, I believe even with Pentox, improvement is difficult. I think supplements may help you to stop getting any worse, but they may not cure you.
Title: Re: Very bad situation
Post by: sonnyjim on March 15, 2018, 09:36:52 PM
So why are we all here man? I know I don't want to live like this forever.
Title: Re: Very bad situation
Post by: TonySa on March 15, 2018, 10:02:18 PM
Other than this thread, lots of improvement stories, slow and steady...
Title: Re: Very bad situation
Post by: sonnyjim on March 15, 2018, 10:58:32 PM
The lack of posts about improvement is worrying I'm not gonna lie...

Everyone says throw all you can at this thing but really does it ever go away? Even with pentox etc everyone here still has peyronies, it doesn't go away... Things are never the same and that for me, is the hardest thing to get my head around.

Nobody will ever want me in that way again, sexually.

If I stop posting here it is safe to assume that I finally had the balls to do what I have been obsessing over for the last year+
Title: Re: Very bad situation
Post by: cheeznips on March 16, 2018, 04:37:53 AM
Well before my last injury I was healing and gained allot of my sexual function back. It does take allot of f'^+'ing time, but idk if it will come back this time. If your not getting erections at all or if it's really hard to hold them just get the implant dude talk to your doctor. Use your money on things that will make you happy.
Title: Re: Very bad situation
Post by: sonnyjim on March 16, 2018, 05:33:59 AM
If I had a billion pounds I wouldn't be happy right now.

And an implant is probably my only option it would be a good idea if I wasn't just going to lose more size than I already have.

Title: Re: Very bad situation
Post by: cheeznips on March 16, 2018, 06:02:34 PM
Imo cials is probably the best medication. It increases bloodflow to penis to help break down plaque which helps erections. Over time this is probably the best medication.
Title: Re: Very bad situation
Post by: TonySa on March 16, 2018, 09:08:46 PM
With high volume implant docs you shouldn't lose size and with time can regain most lost before surgery if inflating daily.
Title: Re: Very bad situation
Post by: sonnyjim on March 16, 2018, 11:59:12 PM
[Full quote removed - USE REPLY] PM sent

Even after 1 year? Is it likely the plaque will go away or shrink after that long, allowing my dick to actually work again?

An implant is my very last option if this cannot get better but honestly I don't know where I would get the money from to pay for it and I have read that not all outcomes are good concerning loss of size etc.

I just don't know how I have no curve or bend and severe ED while others with major bends still have no problem with ED. Something internal must be seriously wrong.

Title: Re: Very bad situation
Post by: cheeznips on March 17, 2018, 01:18:51 PM
something is probably wrong with your nerves, just like mine. Or you have a severe venous leak which i probably doubt because ultrasound would have caught that. I'm like you my underside and urethra are completely numb. i lost all my sexual appetite.i'm really sad dude.i can masturbate and ejaculate but the process isn't fun so the only reason im doing it is to orgasm and try to get blood flowing through my penis.

insurance would probably help with implant. i mean you'll probably lose size but at least youl be able to have erections and orgasm. i don't even have enough money to see a different urologist to get my urethra checked.
Title: Re: Very bad situation
Post by: sonnyjim on March 17, 2018, 02:25:11 PM
Not only do I have severe ED i cannot ejaculate and I have very little sensation in my penis compared to before this. No spontaneous erections, no morning wood, no change of state of the penis (i.e. semis) unless I touch.

Pretty much useless unless I take a lot of Viagra and manually stimulate myself.
Title: Re: Very bad situation
Post by: sonnyjim on March 17, 2018, 11:16:29 PM
I am using VED even though it doesn't seem to do much for me and taking Cialis 5mg daily along with:

Coq10
L citrulline
Acetyl l carnitine

Will this still improve my situation without Pentox? Is Cialis the number one treatment or is Pentox and why is it impossible to get hold of it if it is actually helpful.
Title: Re: Very bad situation
Post by: TonySa on March 18, 2018, 01:09:12 AM
Sounds like a good plan.  Without identified plaque you're probably good w/o pentox.  CoQ10 has similar effects so that's good.  Maybe also consider adding any of these: regular exercise, low carb diet, manual stretching and reverse kegels. 
Title: Re: Very bad situation
Post by: cheeznips on March 18, 2018, 01:51:43 AM
so you just woke up the morning after sex and just had pain in the area? you didn't hear a crack or have sharp pain during sex? no hemotoma in the area in the morning any bruising or anything? were u drunk or high?
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 08:17:20 AM
[Full quote removed - USE REPLY] PM sent

I did have a hemotoma it was too painful to touch or sit down or anything for about 3-4 months when I woke up in the morning it just felt painful and cold that's the best way I can describe it.

Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 08:24:44 AM
[Full quote removed - USE REPLY] PM sent

I do have lumps my penis feels like a snakeskin when I run my fingers over it for some reason the urologists I have seen cannot feel it though but I know exactly where it is because I can feel it even when I'm not touching it.

I don't have any pain anymore though it's just numbness. My penis basically is lifeless now
Title: Re: Very bad situation
Post by: Jack1909 on March 18, 2018, 12:09:39 PM
You are young and your nerves must heal. Give them time it can be a long process. Don't rush into an implant please. I know it's hard even one more day dealing with this crap.
Title: Re: Very bad situation
Post by: Pfract on March 18, 2018, 01:47:35 PM
It still amazes me how people can't understand that ED won't improve on it's own no matter what you do, and normally, it's Quite the opposite. Why can't people face the truth?
Title: Re: Very bad situation
Post by: Sadguy on March 18, 2018, 01:53:22 PM
Most likely, you are right Pfract
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 02:24:53 PM
[Full quote removed - USE REPLY] PM sent

So what is your advice then?

Implant ?
Title: Re: Very bad situation
Post by: cheeznips on March 18, 2018, 03:39:01 PM
So you probably fractured it. Do you think you damaged the urethra?

I disagree I believe ed can fix it's self many thing cause ed so depending on the cause. If someone has a really bad venous leak or if they have permanent nerve damage then probably not but plaque can break away over time and nerves do heal themselves.
Title: Re: Very bad situation
Post by: TonySa on March 18, 2018, 04:11:45 PM
If you're treatment regimen doesn't work after whatever time you're willing to do then it's ED drugs, if that fails VED or injections then implant.  But all require us to take control and act. If we're immobilized it's probably the hopelessness of depression kicking in. ☹️
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 05:06:46 PM
I'm already using ED drugs (Cialis 5mg) + VED.

And a shitload of supplements.

Still do not get morning wood or spontaneous erections. Only get erections with a lot of manual stimulation.

Will taking Cialis daily do anything to improve my ED over a long period of time or should I resign myself to the fact that I will probably need an implant ?
Title: Re: Very bad situation
Post by: Sadguy on March 18, 2018, 05:29:44 PM
Try with cialis for a period of time daily

Do not spend money on supplements that will not do anything, because if cialis or viagra do not do anything, the supplements will do less for your ED. You will be spending money for nothing, and if finally your only option is an implant you will regret having spent money on unnecessary supplements, because an implant is not cheap
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 05:49:52 PM
If this doesn't improve I doubt I will be alive long enough to worry about getting an implant to be honest.

This isn't how I saw my life going and I'm still praying every day I will wake up and things will be different.
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 06:04:25 PM
If I am still getting erect by lots of manual stimulation (no morning woods or spontaneous erections) is this a good sign that things might improve?
Title: Re: Very bad situation
Post by: TonySa on March 18, 2018, 06:21:20 PM
Seems like it.  Did they do an ultrasound for venous leak?
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 06:39:55 PM
I have had an ultrasound and an MRI which they said came back normal. Does that rule out venous leak?

The scariest part for me is that my dick feels like a snakeskin and they tell me they can't find any lumps and it's all in my head when I know it isn't.

I have a lump right at the base of my penis which I guess is why I have flaccid shrinkage too, what are the chances that this will eventually improve or do I have to live with my dick progressively shrinking even more?

I hate this crap...
Title: Re: Very bad situation
Post by: TonySa on March 18, 2018, 07:43:18 PM
If erect for ultrasound they prob checked for venous leak.  I'd say you may need to listen to them re lumps being veins or such and keep working on decreasing ED with supplements and traction or VED.
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 08:20:42 PM
I don't see how they can be veins though that's the problem. They don't move and they are solid.

Maybe I don't have typical peyronies, but there must have been some trauma for there to have been so much pain when it first happened. My sex life before this was great I don't lie, now it is non existent.

Is there a chance scar tissue can still decrease or soften and my ED improve with supplements, daily Cialis and living healthy? I want spontaneous erections to come back and my size back to where it was - or even close.
Title: Re: Very bad situation
Post by: Werther on March 18, 2018, 08:51:58 PM
Dude, everybody already told you what you should do. It's been 6 pages of posts and you still keep whining over the same things. No offence, but you won't find a solution this way.

And for the last time, from what you told, you don't have any peyronie/scar/fibrosis and - trust me - it's better like this, because nowadays there's NO WAY to get rid of fibrosis (a part from surgery or maybe Xiaflex, but I don't know how much this last one could help with erectile problems caused by the scarring).
Title: Re: Very bad situation
Post by: sonnyjim on March 18, 2018, 09:10:26 PM
I would like to believe that I don't have any scar tissue but nobody can seem to explain what the lumps are if they aren't scar tissue.

Nobodies sex life goes from being great to being absolute crap gradually over the space of a year for no reason. This is why I keep asking the same questions as you've said because I keep getting different answers. I won't improve, I will improve, get an implant that is your only option, see if it gets better over time.

Nobody knows anything, urologists don't even know much about this because nobody can give me any answers as to how my dick has shrunk about an inch in length and girth in its flaccid state and I have severe ED but there's no cause for that.
Title: Re: Very bad situation
Post by: Werther on March 18, 2018, 10:09:08 PM
No internet user could ever tell you what your lumps are. Even if there were docs beetwen this forum's users, they couldn't tell you neither, cause they can't see and feel your dick. You just have to use your logic and we've also spoken about this via PM: it's impossible that you have fibrosis, because two ultrasounds didn't detect anything (and when there actually is, they spot it even when the penis is flaccid) and you don't have any degree of curvature and/or deformity (you would still show no curvature only if you have scar tissue exclusively in the tunica's septum, but you said that this isn't your case).

Then, you should be grateful if you don't have any scar tissue, because the sad truth is that today there are no drugs capable of eliminating it (if there were, this forum wouldn't probably even exist, since everybody would be able to completely get rid of peyronie's damages), but still you keep insisting that you must have it.

I read that severaly guys adviced you since the beginning of this topic to get your hormones checked and get a cavernosography (because, based on what you say, venous leakage looks like the most probable cause of your Erectile Dysfunction), but you simply kept ignoring what they told you.

You keep receveing different answers related to improvement because you haven't even discovered your Erectile Dysfunction's cause. Obviously it can improve and you can even actually heal if your cause is merely psychological or depending on a hormonal's imbalance (e.g. low testosterone). But if it's due to fibrosis (and most probably it would be venouse leakage in a case like this), it's not going to improve, ever (I totally second Pfract on this point). Who tells you that you can break up scar tissue by taking supplements or cialis or whatever is just spreading a whole bunch of BS (so, coming back to what I was saying before, you should actually hope to have NOT scar tissue).

So, in my opinion - I'll repeat myself for the last time - get a cavernosography and check your hormones. Only then you could report back to the forum on these tests' resulsts.

In the end you could probably even realize that your Erectile Dysfunction is just due to clinical depression (it sounds crazy, but I've read a lot of cases of people whose dick didn't work just for this reason and you said that you have no libido and you've seen psychiatrists); if it was like this, there would be options far better than the ones used to treat organic Erectile Dysfunction.
Title: Re: Very bad situation
Post by: sonnyjim on March 19, 2018, 08:37:21 AM
I don't think UCLH do any other tests other than MRI or ultrasound for this sort of thing otherwise I would of had it by now surely?

Also can venous leak be checked on ultrasounds? I guess they would of told me if they saw anything unusual on the test.

I would love to believe this is all in my head but the thing is, I am not even depressed about it anymore it's been so long.
Title: Re: Very bad situation
Post by: cheeznips on March 19, 2018, 09:02:37 AM
When I took my Doppler ultrasound the tech said Doppler ultrasound isn't used for seeing scar tissue it's meant for checking blood flow and arteries.
Title: Re: Very bad situation
Post by: Jack1909 on March 19, 2018, 09:33:19 AM
Sonny I feel for you but try to be a little realistic. It's just been one year and some months you cannot say it's been so long. Come on...
People in here have been around these issues for decades..
you cannot give up just after one year..
Title: Re: Very bad situation
Post by: Werther on March 19, 2018, 11:17:44 AM
Sonny, you keep proving that you don't even read what people write to you: I told you both on this thread and via PM that ultrasound done while erect checks for ED problems (both arterial and venogenic); for venous leakage you have to see EDV and RI values (I swear this is the last time I'm going to say this). Anyway, doppler can't tell you what and where the incontinent veins are, even if it spots leakage (and that's because it just checks how fast blood comes in the penis and how fast it comes out, suggesting veno-occlusive dysfunction when end diastolic velocity is too high). A cavernosography is more precise than a doppler when it comes to spotting and defining the degree of venous leakage, because its aim is to show detailed penile venous anatomy. Ask for this at UCLH and if they deny it to you, go privately (I don't know how you can't undestand such obviousness).

@cheeznips: please, stop telling BS. "ultrasound isn't used for seeing scar tissue"? Are you serious? That's the first exam you get to diagnose peyronie's and even newbies know this! No wonder that the OP is confused with people like you that don't even know what they have in the first place and claim to advice others.
Title: Re: Very bad situation
Post by: TonySa on March 19, 2018, 12:30:02 PM
Sonnyjim, it's great everyone's rallied here for you. Now it's up to you to: 1) get your hormone levels checked, 2.) get a cavernosography to check for causes of ED, 3.) stop focusing on having fibrosis/plaque, and 4.) treat depression.  Let us know how that goes once you've taken action on these.  A counselor/therapist/Health coach can help you w taking action.
Title: Re: Very bad situation
Post by: NeoV on March 19, 2018, 06:56:46 PM
My lumps took two whole years to go away, and I had to abstain for long periods of time. In my case they were lymphatic vessels, but I think lumps can be scarring as well. In that case, simply do the treatments, the physical therapies. Do what you can, and that's about it. Luckily girls don't really care about what your penis looks like, they just want to feel sexy themselves.
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 03:30:07 AM
I just want a working penis again that's all I want; how am I supposed to make a girl feel sexy with this? :(

Title: Re: Very bad situation
Post by: cheeznips on March 20, 2018, 03:36:04 AM
Idk this is my opinion but id wait another year and if there are no improvements I would just go for implant dude. Let's face reality it's obvious you can't live like this. It's hard enough for me too. The numbness is pretty killer. Like I can't feel crap when I'm having sex which forces me to be really rough just so I can orgasm. It's really depressing. My urethra and cs are 97% numb.
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 03:50:59 AM
Apparently Cialis improves things like this over time but I can't see it. I have been taking it for three months and still wake up without morning wood and can't get spontaneous erections still but I guess I keep taking it, hoping.

I don't want an implant especially if that means losing more size.

If I can still get erections with a lot of manual stimulation should I keep masturbating or should I just leave it alone. Will that make things worse ? I.e use it or lose it.
Title: Re: Very bad situation
Post by: Paolo on March 20, 2018, 04:16:24 AM
I am going to play Devil's advocate here, get off Cialis!

I for one do not think that these drugs should be taken by guys of such a young age, it seems to me that some guys are taking these like smarties?MM's and just treating the symptom and not the cause, see;

Viagra Resistance (http://www.peaktestosterone.com/Viagra_Resistance.aspx)
Cialis Dependency (http://www.peaktestosterone.com/Cialis_Dependency.aspx)
Cialis - Dangers (http://www.peaktestosterone.com/Cialis_Dangers.aspx)

Heh, I would try it for a week or so, what do you have to lose at this stage. I would seriously consider after you stop PDE-5 inhibitors is to get a hormone check, on the NHS it will be a total hassle, I would even consider an electrocardiogram - or ECG, just precautionary of course, I have had several over the decades just to ensure I am okay, and I am  :)

You are getting performance anxiety all the time, it's killing your erection and probably your libido, you automatically think 'can't perform, need Cialis'  :(

Do not masturbate for at least 7-10 days then check your response to stimulus, be very strict on porn use meantime.


Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 04:25:47 AM
Thing is that Cialis doesn't work either so it can't just be performance anxiety or anything.

I don't even have a girlfriend anymore, she left me in the most brutal way she could.
Title: Re: Very bad situation
Post by: Paolo on March 20, 2018, 04:42:54 AM
So stop taking it then, and your girlfriend left you because of your dick, ridiculous, she left you because you (probably) stopped being the guy she was first attracted too, funny, caring, self confident etcetera.
And are you equating having a girlfriend with YOUR self worth, again ridiculous.

I am honestly being kind here in saying take a good hard look at yourself in the mirror, lift yourself up, exercise, eat well and think of all the positives you have in life, yes, I know sex is very important, so do a lot of research on ED and post back on any benefits you experience.

The fact that you have taken less than 10 minutes to respond to my post proves that you are clinically depressed, for sure you are.

Every member who is responding to your posts cares for you, otherwise why would we post??

I have in the past been clinically depressed (was prescribed Prozac)and yes, for the period I was on it life was good, but I was a zombie, so I know and recognise depression symptoms. I was in the darkest, darkest place with depression and was ordered by a family member to get a diagnosis, it honestly saved my life, get to a Doctor who can refer you to a specialist in depression please  :o

Title: Re: Very bad situation
Post by: suicidecomingsoon on March 20, 2018, 05:32:00 AM
Your ED is not psychological, that is BS. You have been more than a year like that, believe me that is not psychological. If it were psychological, injections would work

Many people are exactly the same as you for doing jelqing. They have the same problems as you do now
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 05:57:28 AM
I know it's not psychological just by running my fingers along my dick, the thing that upsets me is that I know it will never be smooth and normal again.

And yeah, to be honest I do think she left me because of my dick because before, everything was perfect and after this happened to me we gradually drifted apart no matter how much I tried to hold on it was never the same...

I am pretty convinced that this is scar tissue what else could it be? I don't care if nothing came back on the ultrasound or the MRI there are hard lumps so maybe they aren't typical peyronies plaques but there is definitely something there and they aren't veins or anything like that.

Also yes it is hard to be confident when your dick doesn't work but not only that, I was confident before but now my flaccid size has shrunk to a pathetic size. How am I supposed to be confident with that?

I wasn't ever a porn star size but I was happy and confident and knew I was good in bed. Now i can't do crap.
Title: Re: Very bad situation
Post by: Werther on March 20, 2018, 08:31:59 AM
Quote from: sonnyjim on March 20, 2018, 05:57:28 AM
I am pretty convinced that this is scar tissue what else could it be? I don't care if nothing came back on the ultrasound or the MRI there are hard lumps so maybe they aren't typical peyronies plaques but there is definitely something there and they aren't veins or anything like that.

Well man, at this point I must definitely think that you are a troll.

According to the way you think, why don't you take chemotherapeutic drugs? Because, *I don't give a F~@< if an MRI and an ultrasound didn't find crap, I'm sure that these lumps are solid tumors*. What the F~@< do you have in your head?

And it's completely useless that you keep bragging about this story, because even if it was true that yours is scar tissue's Erectile Dysfunction you would find yourself in a sea of deep crap and nothing could solve the problem (nor PDE5i, neither injections); in a case like that, you would only have two options: getting an implant or keeping your problem, while waiting for newcoming options (i.e. regenerative medicine and/or drugs capable of reversing fibrosis) that are yet to come and nobody know when (and if) it will happen.

People have been giving you advice over and over but nonetheless you keep asking and writing the same things in an infinite loop.
Title: Re: Very bad situation
Post by: suicidecomingsoon on March 20, 2018, 10:19:09 AM
I don't think he is a troll, he has the same symptoms that I and other injured people have for having done jelqing. But I don't know why he insists on saying that he has peyronie.
Sonnyjim your symptoms are much more likely venous leak, especially because of the soft glans

Check venous leak if you can with a cavernosography or cavernosometry. But certainly these tests are almost not done
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 11:48:37 AM
Yes I am a troll, I love to spend thousands of pounds trying to figure out what these lumps are on my cock if they are not scar tissue. Maybe it's cancer? I doubt that as I would probably be dead by now. And those two things are the only two things that can lead to having lumps on your dick so, I guess I must be lying.  ::)

You are starting to sound like the people on PEGYM who encourage others to break their dicks and then tell them jelqing is perfectly safe.

PS I am planning on having those tests done I just don't know where I am going to find the money at the moment. There is a hard lump at the base where your dick connects to your body, I guess that's probably just in my head as well though.

When I press my tunica it feels like sandpaper.

Also, if scar tissue ALWAYS shows on an ultrasound why are so many other people having the same problems as me? I have not said it was typical peyronies as I do not have a bend, just shrinkage and severe ED.




Title: Re: Very bad situation
Post by: PeetyPeet on March 20, 2018, 12:39:30 PM
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.





Title: Re: Very bad situation
Post by: Werther on March 20, 2018, 01:10:23 PM
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?
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 01:20:02 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 01:31:56 PM
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.
Title: Re: Very bad situation
Post by: Werther on March 20, 2018, 02:25:32 PM
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.
Title: Re: Very bad situation
Post by: PeetyPeet on March 20, 2018, 03:01:45 PM
Quote from: sonnyjim on March 20, 2018, 01:31:56 PM
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.

Quote from: sonnyjim on March 20, 2018, 01:31:56 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 03:55:16 PM
Quote from: Werther on March 20, 2018, 02:25:32 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 20, 2018, 04:03:02 PM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 20, 2018, 10:51:14 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 21, 2018, 09:50:32 AM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 21, 2018, 12:41:54 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 21, 2018, 04:49:43 PM
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?
Title: Re: Very bad situation
Post by: cheeznips on March 23, 2018, 03:02:49 AM
Me too man, I'm in a really tough place too.
Title: Re: Very bad situation
Post by: sonnyjim on March 23, 2018, 07:45:06 AM
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.

Title: Re: Very bad situation
Post by: cheeznips on March 23, 2018, 06:01:09 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 23, 2018, 07:08:38 PM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 24, 2018, 04:41:12 PM
I think your pegronies is stabilizing
Title: Re: Very bad situation
Post by: TonySa on March 24, 2018, 05:14:57 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 24, 2018, 05:42:39 PM
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 ?
Title: Re: Very bad situation
Post by: TonySa on March 24, 2018, 08:20:00 PM
Once you have the cavernosography you will know more.  Meanwhile continue what you're doing!
Title: Re: Very bad situation
Post by: sonnyjim on March 24, 2018, 08:48:55 PM
Will that show the actual damage?

I am running out of money and time...

Oh, and hope.


Title: Re: Very bad situation
Post by: cheeznips on March 25, 2018, 03:56:12 AM
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
Title: Re: Very bad situation
Post by: Paolo on March 25, 2018, 04:00:29 AM
sonnyjim, take that advice from cheeznips, rest up your penis.
Title: Re: Very bad situation
Post by: sonnyjim on March 25, 2018, 06:51:12 AM
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..
Title: Re: Very bad situation
Post by: PeetyPeet on March 25, 2018, 05:33:11 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 25, 2018, 05:43:05 PM
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.
Title: Re: Very bad situation
Post by: kusher on March 25, 2018, 09:25:33 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 26, 2018, 02:02:01 AM
Won't I lose size if I do nothing at all?

Use it or lose it and all that crap ?
Title: Re: Very bad situation
Post by: cheeznips on March 27, 2018, 02:27:35 AM
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.
Title: Re: Very bad situation
Post by: PeetyPeet on March 27, 2018, 04:19:08 AM
Quote from: sonnyjim on March 25, 2018, 05:43:05 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 27, 2018, 08:52:03 AM
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.

Title: Re: Very bad situation
Post by: PeetyPeet on March 27, 2018, 12:27:45 PM
The possibilities are:

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

Title: Re: Very bad situation
Post by: sonnyjim on March 27, 2018, 01:02:33 PM
So should I have the tests done again or not do you think?

Another Doppler? I dunno...

Title: Re: Very bad situation
Post by: PeetyPeet on March 27, 2018, 03:58:05 PM
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....

Title: Re: Very bad situation
Post by: sonnyjim on March 27, 2018, 05:34:42 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 30, 2018, 11:17:00 AM
This is crap.
Title: Re: Very bad situation
Post by: cheeznips on March 30, 2018, 01:57:50 PM
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?
Title: Re: Very bad situation
Post by: sonnyjim on March 30, 2018, 03:18:05 PM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 30, 2018, 06:19:22 PM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 31, 2018, 12:27:21 AM
I really hope I didn't tear my urethra.
Title: Re: Very bad situation
Post by: Jack1909 on March 31, 2018, 03:11:10 AM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 31, 2018, 05:36:15 AM
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 ?
Title: Re: Very bad situation
Post by: kusher on March 31, 2018, 08:07:56 AM
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
Title: Re: Very bad situation
Post by: sonnyjim on March 31, 2018, 08:30:41 AM
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.
Title: Re: Very bad situation
Post by: Paolo on March 31, 2018, 11:56:04 AM
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?
Title: Re: Very bad situation
Post by: sonnyjim on March 31, 2018, 02:03:00 PM
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.
Title: Re: Very bad situation
Post by: cheeznips on March 31, 2018, 03:40:36 PM
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.
Title: Re: Very bad situation
Post by: sonnyjim on March 31, 2018, 04:24:28 PM
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?
Title: Re: Very bad situation
Post by: Pfract on March 31, 2018, 11:17:46 PM
@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.
Title: Re: Very bad situation
Post by: Paolo on April 01, 2018, 11:40:23 AM
sonnyjim, your mailbox is full, please prune your messages as I cannot mail you!
Paul (paolo)  :)
Title: Re: Very bad situation
Post by: sonnyjim on April 01, 2018, 04:36:59 PM
This whole situation is retarded. 16 months and I still don't know what is wrong with me apart from having to live with the severe ed and a flaccid cock size I had when I was about 12 or 13, there is just no help from the NHS apart from waiting around.

Say I have the NTE test next week which I have been waiting for for months and months, if I don't get any erections while I'm asleep what then? Wait another 6 months for what? There's no more tests to be done.

Even if they see there is a problem on this test what comes next? There was no visible damage on the Doppler or MRI so as far as their concerned it's all in my head.

I'm wondering if this NTE test is going to be just a waste of time too...
Title: Re: Very bad situation
Post by: cheeznips on April 01, 2018, 04:48:11 PM
@pfract:

well here's how i think of it. lets say i did have a penile fracture. I had a 72 hours to go to the emergency room and get surgery, but i didn't. I know, its my fault, but whats done is done. There's not much i can do after that injury, But lets say i did injure/tear my urethra. and i'm having all these urethral problems such as complete numbness of urethra, having to force my urine out, or not being able to shoot out ejaculate anymore, or that my sex drive is completely gone. Some of those symptoms could be resolved by fixing a urethral stricture from the injury. That is the reason i'm going to the urethral specialist to check if i do have a urethral stricture.

Whats the point of ordering 10 more test to see if i did or did not have a penile fracture. That's just f'^+'ing stupid. Your f'^+'ing stupid. Why would i waste thousands of dollars on test that have no solution.

Let me ask you, what can someone possibly do 8 months after the injury has occurred to fix a penile fracture? hm? I can still get erections so i don't think i'm gonna have a transplant done. Please answer this question. I cant get xiaflex injections because that might cause more scar tissue from the injection and i also don't even have curve that's bent enough to even qualify for injections. Also the pictures that come from the injections look more dangerous themselves. I've already tried pentox, cialis, actely-l-carnatine, i could go on forever. But, for a penile fracture after the window of surgery closes there is not much you can do, but take Cialis and let your body cure itself. Like what do you expect them to do? go in there and do surgery to the corpus cavernosum or corpus spongiosum after 8 months have already passed? i would say that this forums is used to help people find a way to ifgure out what they need to do next, but your comments to me and many other poster are nothing, but negative garbage.

If i go in for a cystoscopy or a do a retrograde urethrogram and the test comes back negative than there's nothing i can do, and i just have to live with this problem until time heals me or my nerves come back. But if i do have stricture i can actually go in for a surgery to get rid of any scar tissue in my urethra.

i'm sure there are plenty of people who had injuries to there penis that caused urethral strictures without actually tearing the tunica albuginea. My uro actually said to me that it's possible i could have injured/tore my corpus cavernosum/spongiosum without tearing my tunica and he said he was 90% sure that i didn't tear my tunica. Then he said that even if i did go to the hospital after the injury they were not going to tear open the tunica to do surgery on the cs or cc.

ANY TYPE OF INFLAMMATION TO THE URETHRA CAN CAUSE A URETHRAL STRICTURE AND THAT'S WHAT HAPPENED TO ME. DO YOU f'^+'ing UNDERSTAND?!

@sonnyjim do what you uro tells you to do, and stop worrying about flaccid size. most people got a small flaccid penis. there giving you the NTE to see if anything is wrong neurologically which it might be. Then if they find that your not getting night time erections then they will probably do an mri of your pelvis to pinpoint nerve damage. That's what they did to me 8 years ago, but results came back normal. I gave up on test and slowly year by year i was gain more functionality and sensitivity until my recent injury. I never actually took a NTE exam though.

I'm sorry that your going through this bro. TBH i wouldn't wish any of this on another man.

Title: Re: Very bad situation
Post by: Paolo on April 01, 2018, 05:44:02 PM
Quote from: cheeznips on April 01, 2018, 04:48:11 PM
But lets say i did injure/tear my urethra. and i'm having all these urethral problems such as complete numbness of urethra, having to force my urine out, or not being able to shoot out ejaculate anymore, or that my sex drive is completely gone.
cheeznips, please describe that process highlighted in more detail please, PM if you want

Paul (paolo)
Title: Re: Very bad situation
Post by: sonnyjim on April 01, 2018, 07:00:05 PM
Quote from: cheeznips on April 01, 2018, 04:48:11 PM

@sonnyjim do what you uro tells you to do, and stop worrying about flaccid size. most people got a small flaccid penis. there giving you the NTE to see if anything is wrong neurologically which it might be. Then if they find that your not getting night time erections then they will probably do an mri of your pelvis to pinpoint nerve damage. That's what they did to me 8 years ago, but results came back normal. I gave up on test and slowly year by year i was gain more functionality and sensitivity until my recent injury. I never actually took a NTE exam though.

I'm sorry that your going through this bro. TBH i wouldn't wish any of this on another man.

I'm not THAT worried about my flaccid size although yeah, it does bother me how it's like an inch smaller and thinner than it was before this and I would like it back to how it was but I would much rather get the ED issue sorted out than that it is really getting me down.

I wouldn't wish this on any man either I know what you mean, seems like we're just left to deal with this crap on our own and nobody who's in a position to actually help really wants to know.

After all of this crap I am just struggling to believe it will ever get better especially when I read that ED never really improves. Makes me wonder why I bother taking daily Cialis and all these supplements when they seem to be doing nothing anyway.
Title: Re: Very bad situation
Post by: Sadguy on April 01, 2018, 07:05:31 PM
Stop spending money on supplements, they will do nothing for your ED.

If you are going to spend money on something that is cialis or viagra or injections. If that does not work the supplements will not do it.

Save money, my recommendation

And cheeznips sonnyjim probably this is something like venous leak rather than nerve damage. Take something metallic and pinch your penis, if you feel nothing is nerve damage but if you feel the pinch it is not. If it were nerve damage when touching, pricking your penis would not feel it. If you stick a needle in the glans, you feel it? That would rule out nerve damage
Title: Re: Very bad situation
Post by: cheeznips on April 01, 2018, 11:15:16 PM
i feel like ever since my injury my urine stream and been a lot slower, i have to kinda push my stream. It feels like my urethra is tighter. also before the injury when i would masturbate my ejaculate (sorry for being gross) would shoot in the air, but now it kinda just dribbles out. it feels like something is keeping it from coming out. urethra definitely feels so much tighter.
Title: Re: Very bad situation
Post by: sonnyjim on April 02, 2018, 02:14:31 AM
The thinking behind it was if I could get rid of the ring that goes round my shaft my dick would be able to expand more normally and maybe the ED would go away but that's probably wishful thinking.

All I know is I cannot live like this forever.
Title: Re: Very bad situation
Post by: cheeznips on April 02, 2018, 06:42:07 AM
Yeah, I say the same thing
Title: Re: Very bad situation
Post by: Paolo on April 04, 2018, 04:24:17 AM
Is there such a thing as this below;

Retrograde microbubble enhanced ultrasound urethrogram is a novel technique that can be used in conjunction with standard ultrasound to confirm the presence of a concurrent urethral rupture in penile fracture.

It might be worth cheeznips or sonnyjim enquiring about this???

Microbubble-enhanced ultrasound to demonstrate urethral transection in a case of penile fracture -- Czarnecki et al. 2017 -- BMJ Case Reports (http://casereports.bmj.com/content/2017/bcr-2017-220073.abstract)

I am thinking at least you could get urethral injury confirmed and that you are not going insane  :-\
Title: Re: Very bad situation
Post by: cheeznips on April 04, 2018, 06:24:48 AM
Yeah that's what I'm planning but I'm worried that nothing is going to show up because it's been 8 months since injury.
My nerves for my urethra feel like completely dead. I'm pretty worried. I feel like I probably did fracture the cs or urethra. Probably had like a small tear.
Title: Re: Very bad situation
Post by: sonnyjim on April 04, 2018, 09:44:03 AM
Mine started out as what seemed like a small tear on the underside of my penis probably not affecting the urethra I don't know though but my whole shaft is pretty numb I also have some sort of a glans problem because it's basically patches of white spots through lack of blood flow.

Flaccid always in its smallest state
Lack of sensation
Hard to ejaculate and less pleasure from it
Refractory period is like 1-2 days
Title: Re: Very bad situation
Post by: sonnyjim on April 04, 2018, 01:21:41 PM
I think it must be scar tissue because anything else wouldn't have gone on for this much time.
Title: Re: Very bad situation
Post by: cheeznips on April 05, 2018, 10:56:27 PM
yeah i have the same symptoms.

so i'm waiting for the people at the hospital to call me back to schedule me for an appointment.

did you do the nte yet?
Title: Re: Very bad situation
Post by: sonnyjim on April 06, 2018, 02:35:35 PM
Not yet but I have an appointment on the 19th so I will get the answers I hope. I won't be leaving until I do I can't live with all of this uncertainty.

Title: Re: Very bad situation
Post by: cheeznips on April 10, 2018, 12:52:48 PM
How's things going?
Title: Re: Very bad situation
Post by: sonnyjim on April 10, 2018, 01:44:15 PM
The same...

Haven't masturbated in about 2 weeks and still have no desire to... It's like I have no sex drive at all and could go forever without sex at this rate even though I eat well, am very physically fit and have a very physically demanding job.

Not sure how a bit of scar tissue can do this much to me in terms of ED when I don't even have a curved dick.

If they don't help me again on the 19th I think I will definitely do something crazy.
Title: Re: Very bad situation
Post by: Jack1909 on April 10, 2018, 02:24:02 PM
Not surprising at all you are so fed up with your penis that the libido of any man in the world would plummet. Happened the same to me.
Title: Re: Very bad situation
Post by: sonnyjim on April 10, 2018, 03:38:33 PM
And where did you end up ?

Or are you still in the same situation ?
Title: Re: Very bad situation
Post by: sonnyjim on April 10, 2018, 06:24:01 PM
I will if there is no other option but I am 29, I don't really want to go down that route until I have a diagnosis at least.

This is hell.
Title: Re: Very bad situation
Post by: sonnyjim on April 11, 2018, 02:50:06 PM
I just don't understand how anything could of made my ED this bad to the point where pills do not even work anymore.

Title: Re: Very bad situation
Post by: cheeznips on April 11, 2018, 05:17:16 PM
i'm really sorry to hear about that man. i highly doubt your e.d has anything to do with scar tissue. i'm gonna go with nerve damage. if there was a problem with blood flow i'm sure your ultrasound would have caught it. i'm getting morning erections and everything, but masturbating isn't really pleasurable. i'm still waiting for the urology office to call me back to make my appointment to see if there is something wrong with my urethra or corpus spongiosum. i'm still have a extremely numb urethra. i'm guessing i have a narrowing in my urethra due to nerve damage or something because i never shoot ejaculate anymore. The more i think about it, the more i think i had a small tear in my urethra, which caused the burning sensation in my penis for the following 2-3 months. i know how you feel about "i think i'm gonna do something crazy thing though"... i get it. i really hope you get a diagnosis and treatment my brother.
Title: Re: Very bad situation
Post by: Paolo on April 12, 2018, 04:43:11 AM
sonnyjim, cool your jets until your appointment on the 19th, at this stage of ED you are not achieving any relief by worrying, I know that's easy to say but try putting it at the back of your mind.
Title: Re: Very bad situation
Post by: Jack1909 on April 12, 2018, 10:06:27 AM
@kusher what's wrong with you man??
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 13, 2018, 03:34:27 AM
Quote from: kusher on April 12, 2018, 10:51:19 AM
Nothing is wrong my boy,, in this forum sometimes we joke and have fun
I don't  know how this can amuse you.
You make jokes to try to forget your situation and not think that probably your only solution and the only solution of many here today is only the implant? Because as much as the doctors have told you that your ED will improve, if when you spend 6-9 months after your last operation you still having ED then it won't improve, they only tell you that it will improve to try to calm down but that is what they say to all the young people and you know what? Is a lie
Title: Re: Very bad situation
Post by: Jack1909 on April 13, 2018, 06:30:44 AM
I don't even have the implant option, I whish I had.. I started to think it might be less invasive than straightening surgeries (yes it sounds a paradox) which are erection killers (and nerves as well). It's
Title: Re: Very bad situation
Post by: kusher on April 13, 2018, 07:09:36 AM
May God heal all of the damaged ones. Wish you all the best everyone and good luck
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 13, 2018, 08:36:51 AM
The surgeries, any of them, are not perfect Jack. All have their risks
I think one of the most important things with any surgery is the skill of the surgeon. That's why any of us has to think long before we do anything and look for a lot of information
Title: Re: Very bad situation
Post by: Jack1909 on April 13, 2018, 10:33:46 AM
Risks need to equate with benefits and my overall feeling is that most of the people who underwent it paid too much "just" for having a straight penis. And those are the lucky ones, 'cause even the most recognised and known surgeons have a rate of redo surgery which some would call "suboptimal". The fact is that risks stretch away over the paper they make you sign and that scandal is partially allowed by the intimacy of the problem. I hardly imagine someone speaking out loud on it.
I still remember what I signed for and neither in my worst nightmare I could imagine I would end up suffering from a massive neuropathy. I can understand setbacks and side effects but a surgery can't be allowed to redefine your life in a way you are basically a disabled; you can't deal with the idea you were just a guy with a congenital curvature and now you are tied up to your parents like a baby...
People in here think I rushed into surgeries and somehow I got what I gave. That's not reality and my life became unbearable just after my Kuehhas surgery. I understand people when they say that not everything can't be fixed but come on at least I would deserve to stay the same. Not adding such a pain and severe ED to the package.
People in here don't even read what I write but I'm sure time will tell you I was right. I won't be here by that day so I don't care. My last warning on this forum is: we all start seeking for the sex we lost, make sure this won't turn into a seek for a penis. That's the stage I slip into.
My last post, goodbye.
Title: Re: Very bad situation
Post by: TonySa on April 13, 2018, 11:16:01 AM
Jack, please hang in there and seek out a suicide crisis line if needed.
Title: Re: Very bad situation
Post by: cheeznips on April 14, 2018, 04:24:19 AM
@jack1909

i'm really sorry about what happened in your situation. i really am, i can relate to you i too have pretty bad numbness, and its really hard to deal with. a lot, of people think it only has to deal with sexual situation, but what they don't realize is that even in non sexual situations it can get really uncomfortable, like when i wake up and i just feel numbness and it's really depressing and it causes me to rage a lot. i'm grateful i don't have erectile dysfunction though, sometimes i get morning erections and most of the time i can hold erections when masturbating or having sex. because, of the numbness often times i will have panic attacks in the middle of the day. I've been growing more white hairs because iv been so stressed and im only 30 years old. is your entire penis numb or is it just your underside or urethra? can you feel your urethra when you urinate?

have you tried any experimental studies?
is there anyway to get an implant? i know about the numbness too i get it. It's really hard to live with. i know that in my life it made everything 100x harder.

how old are you? im sure there's a way to get an implant where you wouldn't even need to go near the neurovasular bundle. i'm not saying you should do it, but i think you should talk to your doctor about that.  I'm so sorry that you cant get any type of erection at all, that must be so difficult. If i wasn't able to get any type of erection at all and nothing was healing after a year. I would immediately opt for an implant 100%. Theirs so much stigma about implant but you can get erections any time you don't have to worry about losing your erections. the majority of the people don't have problems with nerves. it's scary but for some people its a necessity that needs to be done.

before you go down that dark road please just get an implant if your not getting any type of erections at all.

Title: Re: Very bad situation
Post by: suicidecomingsoon on April 14, 2018, 05:03:21 AM
jack that's true. Your situation is unacceptable. The risks with stretch surgeries are or should be that the curve returned, loss of length, numbness or in the worst case ED, but having chronic pain that does not let you live, that is not acceptable that is medical negligence. Jack sure there is some treatment that can improve that pain, if your pain comes from the stitch that was not removed, what do the doctors say about removing it?

@cheeznips jack does not complain about the numbness if not the opposite. He has chronic pain doing almost any activity not only with sexual stimilation
Title: Re: Very bad situation
Post by: callmtvitshappened on April 18, 2018, 09:39:22 AM
Damn, feel for you man, wish you best from ma heart.
Just don't give up and don't let this feeling breakes you down, no matter how bad it is. Sorry to say, it happens and that it's not your fault.
Visit clinic and speak up with the doc, it's almost curable for every case.
I've used Link to commercial site deleted by moderator
seems like it helps, but you have to talk with your doctor first.
Title: Re: Very bad situation
Post by: cheeznips on April 23, 2018, 05:01:46 PM
@Sonnyjim

can we get an update?
Title: Re: Very bad situation
Post by: sonnyjim on April 24, 2018, 10:10:38 AM
Nothing has changed really, things are still as bad. Still taking 5mg Cialis daily but doesn't seem to be making much difference at all.

Saw Dr Raheem again and all he really said is keep taking the Cialis, pump and shockwave therapy as because no scar tissue showed up on the Doppler or ultrasound there is no way I have Peyronies. Still couldn't really taken seriously that I have a severe ED problem that doesn't even respond to pills but I don't know. He said it is a waste of time doing the tests again...

I really don't know what to do at this stage I am pretty much resigned to a life of impotence and small shrunken penis. I can physically feel the lumps and damaged parts but nobody else could apart from Raheem who couldn't really even tell me what it was.

What next guys ??
Title: Re: Very bad situation
Post by: JS1991 on April 24, 2018, 08:07:53 PM
Stem cells.
Title: Re: Very bad situation
Post by: Werther on April 24, 2018, 09:49:32 PM
Is there something new about stem cells and ED?
Title: Re: Very bad situation
Post by: JS1991 on April 24, 2018, 10:28:41 PM
It can be effective. I'm suggesting it for lack of a better option. I'd be interested to hear what Zahalsky or Landers would say about the case.
Title: Re: Very bad situation
Post by: kusher on April 25, 2018, 02:35:44 AM
Daily cialis 5mg impact start to kick in after 6-8 months of daily use. If it does not work at all then different medication might work for u like Viagra. U also have stem cell therapy or shockwave therapy or VED. If they all don't work then u have 2 last options. Implant and leave the past behind or wait passionately for regenerative medicine which will appear hopefully in the next 5-10 years. U have to find a doctor that exclusively deals with ed issues. U already went to raheem. Now go to garaffa and Ralph and see what they say.
Title: Re: Very bad situation
Post by: sonnyjim on April 25, 2018, 07:39:02 AM
6-8 months? Will it reduce any scarring in that time? I have been using 5mg daily for about 2-3 months already and it has had no effect at all...

Title: Re: Very bad situation
Post by: cheeznips on April 25, 2018, 02:03:36 PM
idk man. I was in your position ago and still am today, my penis did heal over time, and it did take a while. first time i had my major injury it took about a year and a half for my nerves to come back.

i'm still waiting to see the specialist, but the appointment is in October so i got a while to wait. I just hope my nerves come back. Man, its f'^+'ing tough surviving when you cant feel your urethra. crap!!!! I get pi$$ed off a lot faster, and somehow whenever i'm pi$$ed about something i always tell myself that i'm pi$$ed because i cant feel my urethra, which i probably am. I have GF so that really helps. She kinda mentally keeps me connected to reality.

i say F^@% the test dude. I've been in that situation where you just run random test to find no answer. and, even if you do find an answer what then. After i see this urethra specialist i'm f'^+'ing over it. i'm just gonna see if i have a stricture or not.

i'm pretty sure your penis will heal, nerves are probably shot. But, the injury isn't as bad enough for something to show up on the test. So that's actually good news. Just be patient and wait for nerves to heal i guess. Just don't sit and get off on your own sadness. Maybe start taking walks you know? Your penis will heal just give it more time.

focus on treatments like shock wave therapy a lot of people say good things about it, but i heard it's pretty expensive

when my nerves came back it was like an electric jolt to my penis and i was back to normal again* so just be patient.
Title: Re: Very bad situation
Post by: JS1991 on April 25, 2018, 04:08:31 PM
kusher and cheeznips, great advice! Dr. Landers in California actually uses a combination treatment of shockwave, prp and stem cells. I hesitate to recommend an expensive (~$8000) and "experimental" treatment to someone, but I fully believe in it, for what it's worth.

And sonnyjim, I'm glad you found this forum. Hearing that you suffered your injury jelqing, and having read the posts by the idiots on those forums, it's nice to see that you're in an environment (this forum) that is full of helpful, caring people. Best of luck! I think you will come through this with time.
Title: Re: Very bad situation
Post by: sonnyjim on April 25, 2018, 04:17:09 PM
Quote from: cheeznips on April 25, 2018, 02:03:36 PM
idk man. I was in your position ago and still am today, my penis did heal over time, and it did take a while. first time i had my major injury it took about a year and a half for my nerves to come back.

i'm still waiting to see the specialist, but the appointment is in October so i got a while to wait. I just hope my nerves come back. Man, its f'^+'ing tough surviving when you cant feel your urethra. crap!!!! I get pi$$ed off a lot faster, and somehow whenever i'm pi$$ed about something i always tell myself that i'm pi$$ed because i cant feel my urethra, which i probably am. I have GF so that really helps. She kinda mentally keeps me connected to reality.


Did you have ED aswell ? And could you feel any lumps inside your penis ?

I am really hoping that this will heal as it hasn't shown up on the tests I hope it's like everyone says, not serious.
Title: Re: Very bad situation
Post by: cheeznips on April 25, 2018, 06:37:50 PM
Right after both my injuries i had really bad e.d for months but it did get better over time, when my nerves came back my e.d went away immediately. Yeah i do have a lump in my bottom right shaft. Its really hard i can feel it click but yet nothing shows on test. Dosent make any sense right? Yeah.

Yeah i hope both of our cases arnt serious. Im really afraid i may have torn my urethra. I still have pain some times after sex or masturbation
Title: Re: Very bad situation
Post by: sonnyjim on April 25, 2018, 06:52:12 PM
Would it show if it was serious ? Surely it would?

I'm tired of people thinking this is all in my head, I have e severe ed even with pills and no feeling not to mention my penis is much smaller than it used to be (more noticeable when flaccid though). I'm gonna leave it alone, no sex no masturbation or touching for 3-4 months and see what happens.

I can feel like three different parts of my penis that are hard but no urologist can explain to me what it is and why it didn't show up on the tests...

Will these supplements (coq10, l carnitine, vitamin e, ginkgo etc) still help even though it has been this way for a year and a half ?
Title: Re: Very bad situation
Post by: Werther on April 25, 2018, 09:13:59 PM
Quote from: cheeznips on April 25, 2018, 02:03:36 PM
idk man. I was in your position ago and still am today, my penis did heal over time, and it did take a while. first time i had my major injury it took about a year and a half for my nerves to come back.

i'm pretty sure your penis will heal, nerves are probably shot. But, the injury isn't as bad enough for something to show up on the test. So that's actually good news. Just be patient and wait for nerves to heal i guess. Just don't sit and get off on your own sadness. Maybe start taking walks you know? Your penis will heal just give it more time.

focus on treatments like shock wave therapy a lot of people say good things about it, but i heard it's pretty expensive

when my nerves came back it was like an electric jolt to my penis and i was back to normal again* so just be patient.

Wait a second: are you still suggesting Sonny that he maybe suffered from nerve damage? Correct me if I'm wrong, but I recalled that he said nothing along those lines and he never talked about loss of sensitivity.

MRI and doppler are only used to spot the corpora and the tunica albuginea and, when there's an injection, these tests can also measure how fast blood gets in the corpora and how fast it goes out of them.  And that's all: nerves aren't evaluated. There's another test for this problem: it's called electromyography and it's performed by a neurologist.
Title: Re: Very bad situation
Post by: kusher on April 25, 2018, 11:38:57 PM
Leaving ur penis for 4 months without doing anything with it will help you alot. I actually just started this method yesterday and I'll leave my penis without doing anything to it till August 2018. It's hard but it's so doable. I tried this method couple of years ago and it made a huge difference in terms of erection and sensation. Don't masturbate in between cuz this will make u lose months of recovery. Continue with cialis and then reevaluate sometime in July or August.
Title: Re: Very bad situation
Post by: cheeznips on April 26, 2018, 05:32:01 AM
I definitely think he injured a nerve and some tissue. I think the tussue has already healed but the nerves havent. Which is why he has numb penis and has a hard time getting erect. Just like me. Dosent feel the same.
Title: Re: Very bad situation
Post by: sonnyjim on April 26, 2018, 07:31:16 AM
I also think that ontop of damaged tissue I have damaged the glans somehow because I have white spots on it like there is less blood flow to it.

When I wake up with morning wood (very rare) is only when I need to go to the toilet and when I am on Cialis and even then my erections are not full size they are at least half an inch smaller and there is no feeling there.

Will this heal if I completely leave it alone and keep taking the cialis? And will it decrease scarring that is there already?
Title: Re: Very bad situation
Post by: sonnyjim on April 26, 2018, 03:30:25 PM
I find it hard to believe that this hardening all around my shaft is going to go away now as it has been there for a while (as long as I've had these problems) and it feels too hard for it so go away now.

I have abstained for 5 days already and still have no desire to masturbate or any sexual thoughts. Nothing turns me on anymore and I don't know why.

It seems like some sort of a sick joke that nothing is showing on the tests when obviously there is a pretty severe problem for things to get like this...
Title: Re: Very bad situation
Post by: JS1991 on April 26, 2018, 05:05:56 PM
sonnyjim, It seems like you definitely have some form of Peyronie's plaque on your penis. It is definitely an issue that unfortunately isn't being addressed because of your other issues. The issue with your glans I suspect is connected to your nerve issue, as it is connected to the spongiosum/urethra. That being said, as you are so focused on the nerve issue at the moment (which I believe will at least partially resolve with time), the Peyronie's is progressing unchecked. The oral supplementation you are on is helping, but I suggest attempting to get on Pentox if possible; maybe even buy it online. And I'll repeat what I said earlier in the thread: look into stem cells. It can simultaneously address both of your issues.
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 26, 2018, 05:21:46 PM
The problem of the glans is venous leak..
Title: Re: Very bad situation
Post by: sonnyjim on April 26, 2018, 06:26:31 PM
Venous leak? I hope not but it does sound possible. Surely they would of figured that out on one of the tests?

And also I can't get a prescription for pentox or buy it online (don't know where to get it).

Will any of this resolve over time ? Will abstinence help at all now?
Title: Re: Very bad situation
Post by: JS1991 on April 27, 2018, 06:06:55 PM
Abstinence will definitely help, along with daily cialis at night for nighttime erections. mexmeds4u.com has Pentox available at the moment, and it is possible that you have a venous leak. And I also know that nerve damage can take ~2 years to begin healing up so yes it should get better over time.
Title: Re: Very bad situation
Post by: sonnyjim on April 27, 2018, 06:55:30 PM
What about scar tissue? Does that clear up or shrink because I have a few hard patches on my penis that I think is the reason I have shrinkage especially when I'm flaccid (one inch smaller) ?

I've abstained for 5 days already and I'm taking daily cialis, haven't had any spontaneous erections or anything yet and basically feel nothing down there. I do sometimes get morning woods but they are more like what my old semi erections were like.

Title: Re: Very bad situation
Post by: sonnyjim on April 27, 2018, 07:00:35 PM
Also if I have a venous leak, would that not have showed up on an ultrasound?

Would the daily Cialis I have been taking ruin the results of an ultrasound checking for venous leak?

This crap is too much...
Title: Re: Very bad situation
Post by: cheeznips on April 27, 2018, 07:25:14 PM
i really hope it doesn't take that long for my nerves to heal. it's hard to stay afloat man. i cant feel my underside or my urethra and it just drives me crazy. I've injured it once before and now that i re-injured it in the same spot i feel like i may never get my nerves back. i really need to hurry up and see that urologist. I've noticed that when i urinate now i have to push my urine out. i see my urologist in October but it's so far away.
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 27, 2018, 09:23:48 PM
Quote from: cheeznips on April 27, 2018, 07:25:14 PM
I've noticed that when i urinate now i have to push my urine out. i see my urologist in October but it's so far away.
The same thing happens to me from my injury
Title: Re: Very bad situation
Post by: JS1991 on April 27, 2018, 09:41:36 PM
Pentox will help with the plaques. And no the Cialis should not have ruined the test results. I actually have essentially the same injury as you guys (I think) just a minor form of it. My spongiosum/urethra and glans only fill about 50-75% with blood, and I have slightly reduced sensation there, as well as slightly reduced sex drive. I believe it's due to a small tear at the base of my spongiosum that interferes with blood flow and did some nerve damage. It could just be a more severe case of something the same in both of your cases, but I'm just speculating.
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 27, 2018, 11:57:15 PM
Quote deleted by moderator! Read the forum rules!
How is the situation of your glans? It fill with erections?
Title: Re: Very bad situation
Post by: JS1991 on April 28, 2018, 03:49:06 AM
It fills about 75% while standing. If I sit down and l lean forward, it fills to 100%. If I lean back in a seat it gets down to about 50%. At the worst, I'm at about 25% while laying down on my back. While lying on my side, it jumps up to 50%+. The glans and spongiosum are equally affected, and I can physically feel a thin line of a scar at the very base of my penis running laterally on the underside, roughly 1/2 inch in length. The part of my spongiosum that goes down into my pelvic floor beneath that line scar does not have any issues and is rock hard when erect, whereas the spongiosum leading up to the glans above that line scar is a bit more squishy and less filled with blood, as described above. This applies equally to both erect and flaccid state by the way.

I suspect I had some sort of scar there to begin with at the start of my Peyronie's, as it was a point of impact for me during masturbation, and a main point of pain and inflammation once I developed Peyronie's and before my spongiosum partially deflated. I think the scar opened up and caused the leakage (which improved over time) before partially sealing itself after about a week; the underside of my penis was flat immediately after injury (which occured about a month after my Peyronie's). Probably because of either stretching too hard or manually trying to bend my semi-erect curve straight like an idiot. I'm not sure exactly how it occured. Regardless, my sex drive is still at about 90% of what it was and I have just enough bloodflow to not chafe my urethra during sex or masturbation even whily lying down so until I get treatment I'm pretty content, although annoyed. All of this on top of my plaques. I'm seeing a specialist May 2nd for an ultrasound, so hopefully all of my plaques and blood flow issues will be assessed.
Title: Re: Very bad situation
Post by: sonnyjim on April 28, 2018, 04:34:53 AM
Thanks for your posts...

I can't actually get Pentox because nothing showed up on the ultrasound or MRI which is, as I have heard, unusual but then again I can actually feel lumps that are very deep inside my penis...

I have heard that most serious injuries would show up on the tests... Maybe mine doesn't cover enough area for it to show ? I don't know.

I have spent thousands already trying to get this sorted out and still I know nothing.
Title: Re: Very bad situation
Post by: cheeznips on April 28, 2018, 07:27:45 AM
I tried pentox but it really hurts your heart because it thins the blood ao you heart has to work harder. I threw up when i was boxing because my hear was beating too fast. I think cialis is better.
Title: Re: Very bad situation
Post by: cheeznips on April 28, 2018, 07:32:46 AM
Js1991

How did you injure it and how long ago was it?
Title: Re: Very bad situation
Post by: sonnyjim on April 28, 2018, 02:33:03 PM
Quote from: cheeznips on April 28, 2018, 07:27:45 AM
I tried pentox but it really hurts your heart because it thins the blood ao you heart has to work harder. I threw up when i was boxing because my hear was beating too fast. I think cialis is better.

What do you mean Cialis is better? For what? 5mg daily is not even giving me erections and I have been taking it for 2-3 months already...

What is it good for if not giving you erections? Healing? :S

Doesn't pentox work differently to Cialis ? Doesn't really matter anyway as I can't get prescribed it but nevermind.

I hope the Cialis is actually doing anything to improve my ED.
Title: Re: Very bad situation
Post by: suicidecomingsoon on April 28, 2018, 02:57:28 PM
If Cialis does not improve your ED when you take it, Pentox will not do it either, Pentox will do less

try cialis 20
Title: Re: Very bad situation
Post by: JS1991 on April 28, 2018, 03:45:31 PM
cheeznips, it occured in the beginning of February and I'm not sure how it happened; I was applying traction as well as manually correcting the curvature in my semi-erect penis (never do this ever) and I also applied heat. The night it occurred I didn't notice anything until I removed the heat pad from my penis, after which I noticed it wast turtled up and had greatly reduced sensation as well as difficulty achieving erection. The symptoms mostly resolved after about a week.

sonnyjim, The purpose of the Pentox is to address the suspected plaques in your penis that aren't being treated because of your severe ED. The purpose of the Cialis is to increase frequency of nighttime erections (as you stated you occasionally get); these are a healthy necessity for good penis health, especially if you aren't getting erections while awake.
Title: Re: Very bad situation
Post by: sonnyjim on April 28, 2018, 04:06:04 PM
Quote from: JS1991 on April 28, 2018, 03:45:31 PM
sonnyjim, The purpose of the Pentox is to address the suspected plaques in your penis that aren't being treated because of your severe ED. The purpose of the Cialis is to increase frequency of nighttime erections (as you stated you occasionally get); these are a healthy necessity for good penis health, especially if you aren't getting erections while awake.

But I mean, if I had plaques or scar tissue why didn't they show on the ultrasound? That is what I don't know...

I can feel a big lump going across the bottom of my penis, and lots of little hard bits up my shaft but this didn't show on the ultrasound or MRI and I was told there was nothing wrong.

Any chance of this improving over time do you know? It has been about 18 months and even with the Cialis I'm basically 100 percent impotent.

Title: Re: Very bad situation
Post by: JS1991 on April 28, 2018, 06:31:32 PM
As I'm not a doctor, I can't give you a definitive answer, but it seems to be a nerve issue and from what I've read those seem to resolve (at least partially) over time.

The lack of evidence on the ultrasound and MRI is very odd to me; I'm going to assume you are correct and you do have plaques. If we assume this is correct, then I'd say Pentox is the best you can do to combat it. It can't hurt to try taking Pentox (you can buy it online). Even if you only get one or two boxes and see how it affects the plaques, it's better than nothing. Did you point these hard lumps in your penis out to your urologist so he or she could manually feel them? I'm assuming you did, but if you didn't you should definitely point them out in a physical examination; if you can feel them, your doctor should be able to as well. And if they feel them, they should be able to give you some sort of assessment, no?

I feel invested in your case and I want to see you succeed in this my friend. Keep us updated!
Title: Re: Very bad situation
Post by: sonnyjim on April 28, 2018, 07:06:21 PM
Nobody seems to be able to feel them, Raheem did but he said they could be blood vessels or something and just played it down. I doubt they are blood vessels as I can feel where they are without even feeling my penis just from where the sensation is that I can feel even when im not touching anything...

Maybe I should get a second opinion, another ultrasound or something? Will Cialis help this issue on its own?

I have been looking to buy some pentox but it's too expensive to buy it on that website.

I'm abstaining now hoping it will help... I just want the ED to improve, the lumps to go away and my flaccid size to go back to how it was... Also the sensations and the white spots on my glans. It's driving me crazy...

Also mexmeds4u.com doesn't seem to be working anyway...
Title: Re: Very bad situation
Post by: Werther on April 28, 2018, 09:15:35 PM
Did you manage to book an appointment for a cavernosography or a cavernosometry?
Title: Re: Very bad situation
Post by: sonnyjim on April 28, 2018, 11:35:07 PM
I guess that is my last option that I have it is just finding somebody who does this test in London and spending more money on it. Is this test more reliable than the ultrasound & the MRI ? If so why is it so hard to find someone to do it? Or could anyone recommend me somewhere to go for it ?

I'm honestly so tired of being told that this is in my head now and the ridiculous things I've heard from psychiatrists. It is unbelievable that it has taken me this long and I'm still looking for answers to something that could of been resolved by now if id of just been taken seriously.

Almost a week of abstinence now and not even a tingle, just numbness.
Title: Re: Very bad situation
Post by: kusher on April 29, 2018, 01:25:47 AM
Continue the abstinence. It will certainly pay off if u continue like this till August. Masturbation harms the internal tissues and nerves and prevent them from recovering properly. Continue cialis and maybe penile traction traction to avoid shrinkage. Run everyday and eat healthy. Do squats to strengthen ur pelvic muscles.
Title: Re: Very bad situation
Post by: JS1991 on April 29, 2018, 05:04:02 AM
I agree with everything that kusher said to do.

As for the Cialis, the only reason is to take it at night for increased nighttime erections. This is very important for your penis health since you're not gaining erections on your own; that's why we get nighttime erections in the first place. It's like our body performing maintenance on itself.

And as far as the website for Pentox, it's actually spelled mexmeds4you.com and I think buying two boxes (60, 400mg pills) divided into 1200mg per day will help address the plaque issues that are currently being neglected due to your specific case of ED. You want to control the plaques as best you can so that when your ED settles down, you're already ahead of the game. Hopefully it helps your penis loosen up a bit.
Title: Re: Very bad situation
Post by: sonnyjim on April 29, 2018, 05:50:38 AM
What currency does that website use, so I can work out how much it will be in pounds.

Title: Re: Very bad situation
Post by: ed2018 on April 29, 2018, 07:28:40 AM
US Dollars
https://www.xe.com/currencyconverter/convert/?Amount=38&From=USD&To=GBP
Plus whatever for shipping
And paying with Visa or Mastercard i think they charge something like 2% or 3% for converting pounds to usd

Title: Re: Very bad situation
Post by: sonnyjim on April 29, 2018, 04:47:22 PM
38 dollars for 20 pills how long will they last? Not even a week.
Title: Re: Very bad situation
Post by: sonnyjim on April 29, 2018, 05:00:27 PM
In theory if the pentox clears or softens the scar tissue a little bit, will my old flaccid size come back to how it was ?

Can pentox do that? The Cialis doesn't seem to really be doing much and this sensation I have even when I am not touching my penis is like someone squeezing it exactly where the lump is, if I take pentox and it works could I get rid of this sensation ? It's driving me crazy.
Title: Re: Very bad situation
Post by: JS1991 on April 29, 2018, 05:37:23 PM
Pentox Effectiveness - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,9883.0.html) there is my experience with Pentox if you want to read the effects I felt, but in short, yes it should help. And on the website it says 20 pills, but on the box it says 30 and when I received it, I got 30. Came out to exactly $85.00 dollars all fees included for two boxes (60 pills total). Each box is essentially a 10-day supply if you take 1200mg per day, but I took 800mg/day half the time so it stretched a bit more.
Title: Re: Very bad situation
Post by: sonnyjim on April 30, 2018, 06:05:58 AM
So it's pretty much without Pentox these lumps and hard cord around my shaft will not go away? Not even with daily Cialis ?

It seems like my case is worse than most people here who can still get erections and use traction to regain what they lost. Pumping doesn't even make my flaccid size bigger I come out flaccid the same as I went in... Wtf.

All I want is my size and function back, or even some of it.
Title: Re: Very bad situation
Post by: JS1991 on April 30, 2018, 11:25:17 PM
Well, those lumps and hard cord on your shaft are suspected Peyronie's plaques. At the moment, they are being untreated because you are focusing on the issue of erectile dysfunction. Cialis helps with the ED. Pentox, on the other hand, is meant strictly to help the plaques soften up, or at the least contain it from progressing. Get on L-Citrulline (1500mg/day), Acetyl L-Carnitine (2000mg/day) and CoQ10 (300mg/day) too (all relatively cheap natural supplements), if you aren't already on them, as they help with both ED and plaques.

Hopefully I have a good experience with my stem cell treatment and can fully endorse that to you in the future as well, we shall see.
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 02:27:00 AM
I'm on all of those supplements and more but they are still not softening yet. No improvement in function either. :(
Title: Re: Very bad situation
Post by: JS1991 on May 01, 2018, 02:50:45 AM
Get on Pentox!
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 04:57:25 AM
If i do have a venous leak too, is that basically incurable?

I never had these white spots from lack of circulation on my glans when the initial injury happened so I don't know whether it has just progressed (obviously made things much worse) or if something else is causing it.

Also has coq10 and all the other stuff actually ever helped anyone soften or get rid of scar tissue ?
Title: Re: Very bad situation
Post by: james1947 on May 01, 2018, 07:53:30 AM
Venous leak may be incurable or not I don't now, I have also.
From 3 urologists I see in the past, no one proposed me cure, just surgery or an implant.
Surgery can help, but is a very complicate surgery, if I had the finances I was making an implant

James
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 03:27:11 PM
I mean I don't know if I do even have a venous leak but I never get spontaneous erections, ever, even on 20mg Cialis. ..
Is it wishful thinking for me to believe pentox will help me with this? I think that's the only thing left to try before I just accept that this isnt going to get better or go away...

Title: Re: Very bad situation
Post by: cheeznips on May 01, 2018, 04:40:16 PM
you could try it. the only thing pentox does is thin your blood. when your blood is circulating through your penis the blood can travel through narrow smaller blood vessels, cialis kinda does the same thing but it forces or pushes the blood into your penis. all these medications just force blood into your penis so your penis can heal itself. It's not like the meds actually heal you.
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 05:51:01 PM
I just don't feel like the Cialis is really doing much by itself I NEVER and I mean never get spontaneous erections or anything at all my penis stays in its smallest turtled state permanently.

I dunno how to get past this...
Title: Re: Very bad situation
Post by: JS1991 on May 01, 2018, 05:52:36 PM
The Pentox is only to soften up the plaques since they aren't being addressed at the moment; it will not help at all with producing erections, that is a (mostly) separate issue. If I recall correctly you do actually get spontaneous erections on Cialis at night occasionally (if only 75% strength). These are crucial to maintaining the health of your penis and are a very good sign; the Cialis is doing it's job so keep taking it! The human body gives us men nocturnal erections for two reasons: to literally prevent us from peeing the bed, and to give us the minimum blood flow requirements for a healthy penis, assuming we get no erections during the day. These 75% erections you speak of at night are precisely that, and I suspect they would be weaker or non-existent without the Cialis you're currently on.
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 05:57:35 PM
So where will the improvement come from? I mean, how so I get back to being normal (i.e. my penis actually getting fully hard for sex and being able to maintain it)

Title: Re: Very bad situation
Post by: suicidecomingsoon on May 01, 2018, 06:01:32 PM
Guy everything sounds like venous leak, there is no easy solution, surgery with few possibilities or implant and it is like that. Another  option try njections and/or cock ring
Title: Re: Very bad situation
Post by: sonnyjim on May 01, 2018, 06:12:03 PM
That's what I mean though, I had an ultrasound and they are telling me that nothing is wrong with me... I can't get the help that I need because I'm just being told that it's in my head all the time.

I've been referred to about 20 different psychiatrists who all refuse to believe I have a problem and that it must be psychological because nothing is showing on the tests.

It literally feels like something is pinching my dick ALL DAY long almost like there is a blockage somewhere it's driving me crazy. I didn't have these symptoms after the initial injury pills were giving me very strong erections but gradually over the space of a year it has progressed to this.

I can't understand how nothing showed up on the tests with all of these symptoms... My flaccid used to even get engorged when I was lying down before this happened to me but now it's just completely flaccid and even my flaccid size is smaller than it ever was... Wtf.

How do I find out if this is venous leak and if I can somehow reverse the scar tissue with pentox and other things could my erections come back or is that just wishful thinking? I literally feel nothing down there.

Any ideas would be helpful ...
Title: Re: Very bad situation
Post by: JS1991 on May 02, 2018, 12:31:49 AM
Realistically if I were thrust into your situation right now, I would get on Pentox immediately to soften up the plaques, stop them from progressing, and let my flaccid penis hang looser. I would then go get stem cells shot into my dick immediately from either Landers (California) or Zahalsky (Florida). Their opinions should definitely help more than any of the other urologists you've seen who outright ignored your issue, and I would then give it about 6-12 months, hoping time helped with everything else. At that point if I didn't go for another round of stem cells I would consider surgery or tissue engineering. Also, start working out if you don't already. Lifting weights + cardio.
Title: Re: Very bad situation
Post by: sonnyjim on May 02, 2018, 06:12:50 AM
Can pentox reverse this ?
Title: Re: Very bad situation
Post by: kusher on May 02, 2018, 07:22:50 AM
If cialis and Viagra are not doing anything to ur erection then pentox will not help u much with erection. If u had injury more than  1 year ago and u still don't have curvature then it's unlikely that u have scar tissue. U might have micro trauma that needs good amount of resting. Get a detailed MRI testing in ur pelvic and penile area. Also blood inflow and outflow. If nothing showing up then it is psychogenic or maybe hormones diabetes blood pressure. U have to do all the tests to rule out mental aspect. Did u do night time erection stamp test? Do this test to know if it is physical or psychological
Title: Re: Very bad situation
Post by: sonnyjim on May 02, 2018, 07:47:06 AM
This is what confuses me because from what I have read I should have curvature but I dont. Then again I have been stretching manually since the injury happened because I heard that could help me, would I still have curvature ?

I can physically feel the lump it goes straight across the middle of the underside of my penis (corpus spongonosium) if it isn't scar tissue then I don't know what it could be...

I have had no gains at all from the stretching I have been doing for 1 year and a half and my ED is now at the stage where even pills do nothing at all not even engorge my flaccid.

Is there a chance that this could be something other than peyronies or scar tissue ?
Title: Re: Very bad situation
Post by: Paolo on May 02, 2018, 08:56:24 AM
Did you discuss low dose alpha blockers for ED with you GP?
Correct me if I am wrong but isn't ED your priority??
Paul

Title: Re: Very bad situation
Post by: sonnyjim on May 02, 2018, 09:25:26 AM
Yeah it is my priority but will alpha blockers do anything if Cialis and Viagra don't ?

I also want to try and reverse or heal some of the damage as I would like my penis size to return to somewhere near where it was at least...

I don't know where to begin.
Title: Re: Very bad situation
Post by: Paolo on May 02, 2018, 09:34:47 AM
Have a read of this link below;

Doxazosin and Erectile Dysfunction (http://www.peaktestosterone.com/doxazosin_erectile_dysfunction.aspx)

You will need to discuss this with your GP to see what he thinks, what works for one guy may not work for another.
Title: Re: Very bad situation
Post by: sonnyjim on May 02, 2018, 11:03:34 AM
Iwill try that Paulo, thanks... This really is a hopeless situation for me.

Feels like I'm never gonna have my penis back :(

Does pentox reverse any of the scar tissue at all?
Title: Re: Very bad situation
Post by: Hrvat21 on May 02, 2018, 01:24:34 PM
Guys with penile fracture, i had a penile fracture on three spots, and all of them now created hourglasses 1/3 of original size, some of them being in perineal part of penis, and my whole penis is covered in scar tissue, my injury happened 7 years ago and i lost 2 inches of length and 1.5 of girth. Is it even possible i get that back? I will have to do an implant surely, i sometimes doubt even traction and ved can help. I am taking pentox three times a day and lost around a centimetar last year, and seems like my penis is getting smaller every time i see it. I really don't want to live with penis of that size even if i get implant and am actually considering lifetime abstinence or perhaps trying to save money for a transplant, which would take me lot of time, more then 10 years probably. Anyone in similar "very bad situation"?
Title: Re: Very bad situation
Post by: Paolo on May 02, 2018, 02:56:39 PM
Quote from: sonnyjim on May 02, 2018, 11:03:34 AM
Does pentox reverse any of the scar tissue at all?


I don't think scar reduction is possible with Pentox, isn't Pentox for microcirculatory blood flow and increasing oxygen in the tissues?, and possibly pain??

Wouldn't Pentox really only be useful in the acute stage of peyronie's, therefore long term use therefore pointless?  :-\
Paul
Title: Re: Very bad situation
Post by: sonnyjim on May 02, 2018, 05:01:45 PM
So the chances of my situation improving is that low?

I was hoping that pentox would help me regain some of my size and function that I had. My thinking was that if I could reduce some of the scar tissue, I would have more function...

So it's basically pointless?

What good are the other supplements then really? Should I stop taking everything and just wait for things to get worse (don't think they can anymore)
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 02, 2018, 07:38:19 PM
the supplements are BS and a waste of money
Title: Re: Very bad situation
Post by: sonnyjim on May 03, 2018, 07:26:25 AM
The pentox might work though ?

Title: Re: Very bad situation
Post by: sonnyjim on May 03, 2018, 10:42:13 PM
This website looks like a scam website so much, I'm surprised you guys received anything at all...
Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 05:08:16 AM
I'm not taking it out on anyone where are you getting that from?

And for your information I would rather have a curved penis than one that doesn't work at all.
Title: Re: Very bad situation
Post by: Paolo on May 04, 2018, 05:21:40 AM
Quote from: sonnyjim on May 03, 2018, 10:42:13 PM
This website looks like a scam website so much, I'm surprised you guys received anything at all...

Sonnyjim, I think your above quote needs clarification, what was meant by it?
Paul
Title: Re: Very bad situation
Post by: kusher on May 04, 2018, 05:37:14 AM
Man ur case precisely requires nocturnal penile tumescence (NPT) test. This test is rarely performed. But it's usually performed for ( hard to diagnose cases ) and especially for young men. U can buy a device and do the test on ur own or preferably u can go to a clinic and spend 2 nights doing it. I think u should go for it. Nothing to lose
Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 05:54:14 AM
I meant that mexmeds4you looks like a scam website and I'm surprised that they sent you any orders.
Title: Re: Very bad situation
Post by: Paolo on May 04, 2018, 05:57:07 AM
Yeah, I was pretty sure your comment related to that supplier, thanks anyhow for clearing that up Bud  :)
Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 06:00:22 AM
Well I will trust you guys judgement and order from there because I really have no other choice. I am hoping that the pentox can improve my situation because at this stage I have no other hope...

Title: Re: Very bad situation
Post by: Paolo on May 04, 2018, 06:34:24 AM
An NPT test is going to be hugely inconvenient, probably need two days in a sleep laboratory, and at what cost?

Why wont your GP prescribe Pentoxifylline?
Ask your GP about low dose Alpha blockers
Insist on a full blood hormonal test even

Why not ask for another GP or specialist opinion as I feel you are 'circling the drain' with this f'^+'ed up situation, let's face it your f'^+'ed up situation is more for someone my age, I have (touch wood) never had ED but for someone so young it is totally f'^+'ed up.

Sex for any guy is hugely important, you are going to have to badger your GP until he/she gets you a second opinion, hell even a third opinion.

I know this isn't much help, but there you go  :)





Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 09:19:20 AM
It's almost impossible to get prescribed pentox here and because nothing showed on either test they assume there's nothing wrong with me. I can only get erect with manual stimulation (a lot of concentration) and even then I don't reach full erection even on Viagra and it feels very weak especially at the base...

Hoping Pentox will make a difference if I can order it online from that dodgy website.
Title: Re: Very bad situation
Post by: TonySa on May 04, 2018, 01:06:47 PM
A cheap NTP test if you arebunaware if having nocturnal erections.  Place scotch tape around dick.  If broken in morning, you've gotten an erection while sleeping.
Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 04:19:42 PM
I was thinking this the other day, does it really matter whether or not I get nocturnal erections (I don't) but if I did I'd still be in a bad situation so would it make a difference anyway ?

Do damaged tissues in the penis heal after time or not? Like if I abstained for like 4 months, would anything heal or change in that time ? Just wondering because I feel like this is never going to get better. :(
Title: Re: Very bad situation
Post by: kusher on May 04, 2018, 05:44:19 PM
Ofc damaged tissues in the penis do heal over time. U have to read studies about completely amputated penis. Ppl who have mental issues and amputate their penis or get into a fight and lose their penis due to slashing can still have 100%100 erection. But it depends on the surgery outcome and recovery period. I read the other day, a guy who had mental episode amputated his penis completely then was repaired successfully. After 10 years, the same guy had another mental episode and he cut his penis again. He then had another successful surgery and his erection returned after 1 year and sensation after 2 years. So yes penis tissues do heal given proper care and time. U should do something unconventional and very effective like acupuncture for ed, shockwave therapy for penis and engage in Chinese medicine. These options are risk free and impactful. But it also depends on how ur body reacts to them. Try it nothing to lose
Title: Re: Very bad situation
Post by: kusher on May 04, 2018, 05:47:14 PM
Also if u want to know if any website is legit or scam. Simply type the website name on ( scamsdviser ). Scamsdviser will tell u whether a website is trustworthy or scam
Title: Re: Very bad situation
Post by: sonnyjim on May 04, 2018, 06:59:56 PM
If people can still get erections after amputating their penises why can't I get an erection when what happened to me was much less severe? It doesn't make sense...

I have been told to do shockwave therapy but I don't know how it could work it seems like too good to be true plus apparently it does nothing for scar tissue which is what I'm assuming I have although it didn't show in the tests because the only other thing it could be is cancer.
Title: Re: Very bad situation
Post by: sonnyjim on May 05, 2018, 03:15:34 PM
Still waiting for a response from mexmeds4you so I can pay for the pentox but I have been waiting for 2 days... Wtf.

Why is it so difficult to get something that could potentially help us ?
Title: Re: Very bad situation
Post by: JS1991 on May 05, 2018, 06:37:37 PM
sonnyjim, from what I've read the male penis needs to be erect from time to time in order to stay healthy. Nocturnal erections are something our body's do for us just in case we don't or can't get an erection during the day. This is why I say your nocturnal erections (although not 100%) are a good sign and definitely helpful.

Regarding mexmeds4you, yes it is definitely a sketchy looking website. But for lack of a better option, I have been using them for Pentox myself. I've seen three urologists plus my GP and none would prescribe it to me. In this situation I felt it was best to take the chance, and mexmeds4you came through for me. I'm actually ordering more as we speak; the process is aggravating as you mentioned. After sending your purchase through the website, they have to manually contact you through email for payment via Paypal (at least that's how it worked for me). The person who responded with the invoice is named "rubystar" lol. Very sketchy, but I haven't had any problems with them though, for what it's worth (except for the process taking a long time). If anyone has a different website, I'd love to hear of it. Until then, I'm sticking with mexmeds.

Pentox, as other users have noted, works by thinning the blood and allowing it to penetrate into the smallest of blood vessels. This resulted in a reduction of "hard flaccid" symptoms in myself and generally loosened my penis up. This is what I'm hoping it will do for you: get the blood flowing into every part of the penis possible, allowing it to hang looser and more naturally.

Regarding shockwave therapy, it works by actually breaking up the plaques and opening up new capillaries in the penis. In my opinion, it would be best to couple this with a stem cell + PRP injection (this three-step treatment is used a by some practioners; I wouldn't get the shockwave therapy by itself). But again, just my opinion; we will worry about that down the road.

Edit: Just wanted to add that the invoice on Paypal describes the package I'm receiving as "Mexican Folk Art Oaxaca Wood Dragon" lol.
Title: Re: Very bad situation
Post by: sonnyjim on May 05, 2018, 08:48:02 PM
I'm actually hoping that pentox can get rid of some of the scarring or at least make it softer because I think that is whats causing the problems. I never had ed problems until the scars got harder I don't know whether it's wishful thinking or not but other people have said that it has helped with ed.

I believe I do have scar tissue from the first injury and also some sort of tissue damage which I am hoping can still heal and give me some sensation back...
Title: Re: Very bad situation
Post by: Werther on May 05, 2018, 09:02:42 PM
You've got it right: yours is wishful thinking.
Title: Re: Very bad situation
Post by: sonnyjim on May 05, 2018, 10:32:22 PM
If it is tell me what else I can try because there surely are other things to consider trying before an implant?

Title: Re: Very bad situation
Post by: suicidecomingsoon on May 06, 2018, 12:25:36 AM
Don't think that pentox is the big thing
Title: Re: Very bad situation
Post by: JS1991 on May 06, 2018, 04:51:32 AM
QuoteI'm actually hoping that pentox can get rid of some of the scarring or at least make it softer because I think that is whats causing the problems. I never had ed problems until the scars got harder I don't know whether it's wishful thinking or not but other people have said that it has helped with ed.

That is not wishful thinking my friend, Pentox can help to soften up your penis. At least it helped me out with the issue. Is it going to "get rid of" your scarring? No, but hopefully we can loosen that penis up a bit, and help manage the symptoms as well as prevent any further progression of plaques. There is no "the big thing" when it comes to our issues, but we do have a few tools at our disposal, and I consider Pentox to be one of them. I say take 1200mg/day for a month and assess from there. You can check the oral medications subforum on this website if you want to see how Pentox has helped other members of this community.
Title: Re: Very bad situation
Post by: Paolo on May 06, 2018, 05:24:48 AM
I am going to be extremely left field here but why not give Lion's Mane a try, quite cheap and can boost NGF, that may/could help increase sensitivity, it is also great for mood enhancement.
Title: Re: Very bad situation
Post by: Werther on May 06, 2018, 09:17:52 AM
@JS1991: you probably didn't read all of his story. It's highly improbable that sonnyjim has peyronie's disease and that's the first reason why pentox would be completely useless for him. By the way, even if he really had scar tissue, pentox would still be useless for him, since he said that he's been feeling lumps for more than a year: this drug is only useful - maybe - in the acute phase and it won't do anything if you have already developed scarring (obviously it could maybe prevent further scarring, but after more than one year, you'll more likely be out of the acute phase and scarring won't worsen on its own, so that drugs like pentox will basically do nothing). It's pretty clear that sonnyjim's words, based on what he asked, are wishful thinking; he asked if pentox can eliminate or reduce scar tissue or if it can cure ED: it obvioulsy doesn't work this way. If it could eliminate penile scarring, it'd be the cure for Peyronie's and this forum wouldn't even exist and it's clearly not a PDE5i or something like bimix or trimix, so I don't see what can it ever do for erections...

@sonnyjim: your last urologist suggested you to try shockwave therapy, so why don't you give it a shot? It's not surgery and its use is designed mainly for ED. Maybe it could work for you.
Title: Re: Very bad situation
Post by: sonnyjim on May 06, 2018, 10:18:20 AM
I am going to try shockwave therapy but if this does nothing to improve things what are my options then? Implant? Or is there any sort of surgery they could do?

Pills don't really help anymore and I'm only 29 :(
Title: Re: Very bad situation
Post by: Werther on May 06, 2018, 01:31:31 PM
Dude, it makes no sense to think about what to do if shockwave therapy won't work. Try it first, then, if you see no improvement, you can wonder about what else you can do.

You already know what's left if your ED is organic and nothing helps: there's vein surgery (not very successful, based on people's reports and you have to actually make sure that you suffer from venous leakage) or the implant. If you don't feel comfortable with any of these procedures, you can always wait and hope for future options.

I know it F^@$!ng sucks, but there's nothing you, I or whoever can do about it.
Title: Re: Very bad situation
Post by: kusher on May 06, 2018, 06:28:38 PM
What are your symptoms? Difficulty in achieving erection or difficulty in maintaining? Did u try the highest dose of Viagra? Did it help at all?
Title: Re: Very bad situation
Post by: sonnyjim on May 06, 2018, 06:52:50 PM
If I took 100mg Viagra I'd still have to manually stimulate myself and it would be hard to maintain.

Could this be caused by whatever damage I have done to myself a year and 6 months ago?

If I take 5mg Cialis daily I sometimes wake up with a semi at best, never ever a full erection like I used to get. This is usually when I wake up needing a piss.

I never seem to get fully erect like I used to before this even while manually stimulating to porn etc it happens but how do I explain it, there's no pleasure behind it, no desire to be with a woman etc. Whenever I'm not manually stimulating myself I am in the fully flaccid turtled state all day long, I can't really feel anything in my penis even when I do masturbate and ejaculating is difficult and never feels like I have fully ejaculated like I used to. There's no real pleasure from mastuebation or sex.

My glans also has white spots from what I guess is a lack of blood flow.

Title: Re: Very bad situation
Post by: sonnyjim on May 06, 2018, 06:57:12 PM
Also if a nice girl kissed me and I knew that we would be getting down to business, I can feel literally nothing downstairs and i stay flaccis. Whereas before I would get erect and be ready to go I would now have to bring myself to erection.
Title: Re: Very bad situation
Post by: cheeznips on May 06, 2018, 11:04:09 PM
yeah i know exactly what you mean dude. Try shockwave therapy I've heard a lot of good stuff about it.

When i have sex there isn't a lot of pleasure behind it either. I orgasm but the process of sex isn't that fun. Im 100% sure its because i cant feel my corpus spongiosum or urethra though. Though kinda makes sense.

with most men the underside and the head of the penis is the most sensitive and those nerves are actually connected. your just gonna have to realize that you've damaged those nerves in the injury/fracture and it will take time for them to come back in the meanwhile you can do electro shock therapy. which iv heard good things about.

obviously its a good sign that your getting somewhat of night time erections, which is really good news. It means that your nerves are kinda working... damaged but still working. the real question for you and i is will our nerves completely return to normal? or, did we completely disrupt the nerves that it cant recover, or will we have partial recovery.

to me its pretty obvious that we injured or tore corpus spongiosum or urethra since those 2 parts can cause erectile dysfunction due to the injury to the nerves.

yesterday while having sex i went flaccid because my gf got really wet and i literally couldn't feel anything at all. I still got it back up and finished, but that never happened to me pre injury. the absence of my the feeling to my urethra and corpus spongiosum is pretty obvious.

i've noticed without the feeling to the nerves to the spongiosum or urethra i cant control my penis. i cant flex or give my penis strength. I lose erections because that part of my penis feels dead.
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 07, 2018, 12:32:26 AM
It's not the nerves. Feels less because there is less blood in the CS and in the glans, simply because of that.

I have not heard so many good things about shockwave, but it will not hurt you either.
I doubt it works and it will cost you a few thousand though
Title: Re: Very bad situation
Post by: sonnyjim on May 07, 2018, 06:19:39 PM
Once again tried VED and I'm getting pain again in those lumps I guess I just thought it might of helped with my ED but I just don't feel like anything is going to help at this point in time.

If there is no way to reduce the scarring or pain and improve ED then I don't feel like I really have a future like this.

Man I miss how my life was a year and a half ago, how could all of this crap be so hopeless and incurable?

I don't really want an implant but it seems like the only real thing that can fix this and the thing is, I would rather die than live like that, especially at such a young age, it wouldn't be so bad if I was 50+.

I don't know what else there is to try if shockwave therapy is pointless and a waste of money...

Would total abstinence make things better or worse ?
Title: Re: Very bad situation
Post by: kusher on May 07, 2018, 07:43:51 PM
Dunno if u should continue with ved or not. I heard alot of bad things about it and some ppl got severe ed from it cuz of misuse. Go nofap for 4 months and see how it goes. It might give ur organ the rest it needs. I tried it before and it was a game changer. I'm now on it and I'll continue like this till August. But u need ur nighttime erections to provide oxygen to the tissues. Just take 5mg cialis before u sleep. I can't stress how important it is for u to jog or run everyday. U need to circulate ur blood all over
Title: Re: Very bad situation
Post by: sonnyjim on May 08, 2018, 01:25:44 AM
Ok then, well i'll return here in September and let you guys know if anything has changed I guess.

Thanks for all the advice.
Title: Re: Very bad situation
Post by: cheeznips on May 10, 2018, 04:24:48 AM
Does anyone have pain in penis during masturbation or sex? Maybe im still healing from my injury from july 4th 2017. Im guessing my corpus spongiosum or urethra is still healing from that injury but im not sure my urologist appointment is in october so its a while away. Im afraid ive been avoiding sex sibconaciously because of the pain. It just aches while i have sex, maybe i have a stricture or maybe its still healing idk.
Title: Re: Very bad situation
Post by: kusher on May 10, 2018, 06:53:22 AM
For urethra issues, I highly recommend joel gelman. Treating urethra issues is not the only difficult part. Diagnosis is also hard and u need a urologist who works on urethra every week to maximize the outcome. Good luck. A general urologist will not benefit u. U need a reconstructive and male genital urologist. A general one will just BS u. Straight up.
Title: Re: Very bad situation
Post by: Jack1909 on May 10, 2018, 08:13:33 AM
Quote from: cheeznips on May 10, 2018, 04:24:48 AM
Does anyone have pain in penis during masturbation or sex? Maybe im still healing from my injury from july 4th 2017. Im guessing my corpus spongiosum or urethra is still healing from that injury but im not sure my urologist appointment is in october so its a while away. Im afraid ive been avoiding sex sibconaciously because of the pain. It just aches while i have sex, maybe i have a stricture or maybe its still healing idk.

I have since 2012 and got worse since 2014 but mine coming from surgery. Basically I have pain everything I do. But I repeat the cause is different.
Title: Re: Very bad situation
Post by: sonnyjim on May 10, 2018, 01:07:31 PM
What does coq10 actually do for this condition or is it basically another waste of money supplement?

Nothing seems to work for my severe ED and I'm doing everything to try and help myself including masturbation which, frustratingly, is not even difficult being that I never even think about sex anymore it's like that part of me is blocked or permanently changed. It's hard to explain my problem when even scans don't show lumps I can feel with my fingers.

I wish I never jelqed now as I had a good size and could go 3,4 or even 5 times a day and now I get no spontaneous erections at all, very weak morning woods which are about 3/4 of an inch smaller than they used to be and no girth since my penis feels soft when squeezed even when I'm "erect".

I hope abstinence can heal whatever it is that is wrong with me.
Title: Re: Very bad situation
Post by: Paolo on May 10, 2018, 01:28:19 PM
Hi, CoQ10 is in every cell in the body, generally taken for its antioxidant properties for peyronie's;

https://www.everydayhealth.com/diet-nutrition/coq10-miracle-vitamin-or-waste-of-money.aspx

Unfortunately I don't think its going to vastly improve your situation with erectile dysfunction but by all means if you feel like trying it then the only negative will be on your wallet.
As with many supplements don't overpay thinking if it's more expensive = better, generally price is not an indicator of quality.
Title: Re: Very bad situation
Post by: sonnyjim on May 10, 2018, 05:19:40 PM
It looks like I'm probably going to need some type of surgery at least and as many people have said, probably an implant.

I have read a lot of things about the penis healing itself during abstinence and a few people who were told they had venous leak apparently started getting erections again after not masturbating for 4-6 months so I'm going to try this I guess I have nothing to lose.

I don't believe this is a pelvic floor issue I feel like something is blocked as I have what feels like a squeezing sensation like 24 hours a day. The worst is the shrunken flaccid that it is causing me and obviously the fact that pills no longer work.

I don't really want an implant because from what I have read I will lose more size..  I want to ideally gain my size back but I need my dick to heal first if it's possible after a year and a half of these problems.

Wish me luck guys and obviously any advice would be appreciated...
Title: Re: Very bad situation
Post by: kusher on May 10, 2018, 09:34:53 PM
Yeah me too. I heard some stories of ppl restoring their erection and sensation after 6--8 months abstinence. If that's does not work and u want an implant. U only have one guy which will give u an implant without complications ( andrew kramer ) he is number one in the world. He had done more than 2000 successful implants including salvage. If u go to someone else then u might end up with complications that will drive u more crazy than ur current situation. U can check his YouTube channel. He uploads 5 new cases every week. Each one is more complex than the other. But don't rush!!!! Penis does heal given proper care and recovery time... evidence? Check John Wayne Bobbitt, his wife amputated his penis and threw it in the street. He got his package reattached and 1 year later became number 1 porn star in the world with best sales and numerous awards. If there is a will there is a way!
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 03:03:17 AM
I doubt I'll ever able to become a porn star now my size is 6.5 at best and after an implant I don't know what I will end up with.

Does scar tissue actually go away? I mean I know it will always be there but can it shrink etc? Because I doubt I will ever have an erection with it like this...

Very upset because I did used to have a good size but tried to be greedy and did jelqing which I think was what caused all of this crap...

Wish I could go back in time...
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 04:12:44 AM
Jelqing destroys lives.
I understand what you feel to me the same thing happened, those sites should be closed and their owners punished for lying and giving dangerous advice
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 04:49:53 AM
Yeah and then when I made a post about it they told me that jelqing would correct it and get rid of the lumps... Those people are retarded.

Also, in the case of that guy getting his penis amputated and recovering, how can whatever issue I have be worse than that :S I mean, I guess he probably had a lot of money and so he could basically perform miracles. I don't have a lot of money to get this sorted out but even these lumps are scar tissue, how can that be harder to fix than having your penis amputated? It makes no sense...

Can't they just cut out the scar tissue without having to go straight for an implant?
Title: Re: Very bad situation
Post by: cheeznips on May 11, 2018, 04:50:45 AM
Sonnyjim i thought you injured yourself from sex not jelqing.

I cant even sleep because im so anxious of my numb urethra it feels so different that im having panic attacks
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 05:10:42 AM
I am not sure which one it was to be honest as I was jelqing but the pain happened after a night of sex with my girlfriend. If it was the jelqing there was no pain at that time but I do feel like it could have contributed somehow making my dick weaker of over engorged or whatever.

Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 05:16:05 AM
It is not worth asking in such forums, they will deny that jelqing can cause any harm, they will say that it is a pelvic floor problem or that you are a troll and they will make fun of you among them. Their solution will be more jelqing..stupids

The problem is that although your problem was scar tissue (which I think is venous leak mainly from glans with minor scar tissue because I have the same) if you already have ED surgeons will not want to operate since they probably do not believe that you will improve your ED by removing the scar tissue but rather worse, since these operations carry the risk of causing ED.
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 05:29:10 AM
How long have you been dealing with this if you don't mind me asking? Also, have you tried abstinence ?

What else have you tried and are you considering an implant?
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 05:54:19 AM
About five years. In the beggining I did not want to believe what was happening to me and I said to myself that it would recover, but he has not done it and I do not have any hope that it will.


I did abstinence for months, several times, I would not touch or see porn in months, in many months, but it did not help. Yes, the first or second erection after that time of abstinence is easier to get but it is a deception, it will only provoke me more premature ejaculation, since of the excitement of having been months without masturbating you cum in a very few seconds and besides I was still not able to maintain erections.
After that first two masturbation everything was just as bad as before.

Also spend a lot of money on supplements that did nothing for my erections such as maca, vitamin E, vitamin B, garlic, nitric oxide, high protein diet, ginko biloba, etc ... Besides that I spent a good amount of money on Viagra Cialis and Levitra that would only help me to hold the erection for 10 seconds more and give me erections somewhat firmer but insufficient, neither morning woods nor spontaneous, also tried injections (alpostradil) in maximum amounts It gave me a bigger flaccid but not an erection, sometimes I would get a semi erection but not so good
About the implant I don't know. It is a big decission I think about it sometimes. I wish I could fix this without needing it but I can not be living in this way all my life
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 06:32:04 AM
This is possibly the worst thing that could happen to a guy I think, apart from death, but even that isn't so bad in comparison.

Did you have an ultrasound or an MRI ?
Title: Re: Very bad situation
Post by: kusher on May 11, 2018, 06:51:05 AM
Why would u guys even do the jelqing thing? It's boring and stupid. Want a bigger penis? Engage in penile traction and let the device does its job instead of ur hands. If u have been dealing with ed problems for 5 years then it's unlikely u will ever recover. Get implant and put the past behind u. Nothing else will benefit u. Did u try the highest dose of Viagra? Unless u wanna wait for the so called regenerative medicine which will appear when ur probably a grandfather
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 07:08:03 AM
I had several ultrasounds with injection, everything was fine according to them even if I never got an erection with the injection. WTF
Finally I had a cavernosography that doctors detected venous leak

kuzher: yes I have tried the highest doses of viagra and even 100 of viagra and 20 of cialis together. They do not help almost anything
The decision of the implant is not so easy, it is a very important and difficult decision, I am certainly considering it but I think I am not ready yet, sometimes I have the hope that something new will come though I do not trust much in that
Of course if when I spend my 20s everything remains the same I will probably do it
Title: Re: Very bad situation
Post by: cheeznips on May 11, 2018, 07:10:56 AM
people try jelqing exercises because in the media and especially with american porn it displays that longer = better, but that's so far from the truth its actually ridiculous. the truth is more blood in the penis = better sex and the longer you can hold that blood is even better.

the thought of stretching and causing micro trauma to the tissue to make your penis bigger is ridiculous, but i understand why you guys have done it. people go to great lengths because of insecurities. i hope everyone can get better here. sure it wont be as big anymore because blood wont be able to completely fill it up but i'm sure even with a implant you will be able to keep your significant other happy with the fact that you can get erect anytime and wont have to worry about losing your erections.

its tough man, mentally dealing with this numbness. it's literally crippling me. i feel like life would be so much easier if i didn't make that stupid mistake.

Title: Re: Very bad situation
Post by: cheeznips on May 11, 2018, 07:20:32 AM
suicidecomingsoon

imo, i too think you should go for the implant. no point of waiting 40 years for some new miraculous drug to come out. If your in your 20's or 30's go for it. It will be harder to find a women when your in your 40's. i say get the implant and don't lose anymore time. You youth should not be wasted.

can you hold an erection long enough to orgasm? what is your erection quality without any meds? how long can you hold an erection for? have to spoke with your doctor about an implant?

im not against suicide but im pretty sure your girl will be happy with your sexual performance with an implant.
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 07:33:59 AM
I did jelqing because they said that it was a natural and totally safe method. They never said that it could cause venous leak (ED)and internal fibrosis, if they pointed that out, I never would have done and they continue without saying it and deceiving more people and people who say they have been injured by jelqing and ask for help they are banned.

I was 19 or 20 years old, I was young and idiot, I did it a couple of times and it destroys my life for being naive

About my erection my quality erection is very bad,  I can hold the erection only for a few seconds (15-20) Yes I have spoken to some doctors about implant. Some doctors say that I am too young for the implant, others say that I do the surgery
Title: Re: Very bad situation
Post by: Jack1909 on May 11, 2018, 09:06:36 AM
Look at me, two surgeries made me impotent. Surgeries make scar tissue which might lead to impotence. That being said, I never heard about surgeons capable of removing scar tissue. It's techincally impossible and the simple act of removing would mean a new scar itself. 
Title: Re: Very bad situation
Post by: sonnyjim on May 11, 2018, 11:42:24 AM
So basically there is nothing we can do just accept that our dicks are going to shrink till there's nothing left, sex life is over before were even 30...

I'm using ved and taking so many supplements but it is all basically for nothing as we're all fighting a losing battle might as well accept i am going to be lonely and have no future.
Title: Re: Very bad situation
Post by: kusher on May 11, 2018, 03:56:51 PM
Ppl get their penis amputated then they do a very long and risky surgery and they end up with an intact penis that can get aroused. And u just do jelqing and end up with an unusable penis???!!!! There is something fishy and missing in this equation..... suicide with pills or without, do u get spontaneous erection or morning wood? Just asking to rule out the mental aspect.. what about u sonny? Any sign of spontaneous erection or morning wood with or without pills?
Title: Re: Very bad situation
Post by: kusher on May 11, 2018, 03:59:37 PM
I started to think that these studies and literature are all BS that are based on lies. Authors just publish it to boost their ego and reputation.
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 11, 2018, 04:16:28 PM
kusher jelqing injuries are very real just doing a search in google you will get hundreds of cases, even in FT there are dozens of guys injured by these exercises now looking for an implant, some already implanted, there is a man (injuried from jelqing)  who was implanted by kramer and others implanted by Dr Eid.There is nothing psychological there, when the ED lasts for years, when you are just quiet in your house and put some porn and you can not get it, when you do not have morning woods or nocturnal erections ... it is purely physical

I have venous leakage detected by cavernosography, something that for me was obvious since my glans only gets some blood before cumming. If at that moment I get some blood I put my finger against my dorsal vein, my glans will remain with blood, but immediately after removing the finger the glans will be emptied (but this is just the problem of the glans). My cavernous bodies also work badly.

I have not had spontaneous erections or morning woods in years, with or without pills I will not get anything, zero
Before doing these exercises I would get an erection in a second, if I saw something erotic, the erection would come in a second and it would stand by itself for several minutes. Now I can not get it without a lot of physical stimulation and even with constant physical stimulation I can not keep it
Title: Re: Very bad situation
Post by: Werther on May 11, 2018, 09:04:57 PM
Hey Kusher, what's your point with this penis amputation thing you keep talking about? Should it represent that, in your opinion, all penile damages heal by themselves and ED can pass away just by abstaining and let the healing do its job? If so, it looks like you put your foot on the wrong board, since we're mainly talking about Peyronie's disease here and it should be evident to everybody here that it's a F^@$!ng healing disorder, i.e. your penis is actually healing, but with fibrosis. In fact the issue in Peyronies Disease (and any other fibrotic disease) is the healing itself and what people do is trying to stop asap and as much as possible whatever scars could develop from healing. You're deceiving people by talking the way you do. Besides, just for clarifications, it's plenty of surgeries where amputated body parts were then reattached where they belonged to (e.g. https://edition.cnn.com/2015/07/24/health/severed-hand/index.html), but these injuries have nothing to do with penile ones and I don't see how they connect with the principle, you're so proud to believe in, that abstinence solves all kinds of ED.

Now, if you wanna try it, nobody can tell you not. But be careful when you advice other guys here, since there are a lot that should do everything, except for abstaining.
Title: Re: Very bad situation
Post by: kusher on May 11, 2018, 11:03:27 PM
Whether you like it or not, abstaining has the capacity to heal ed for some ppl and this depends on the severity and degree of ED and the injury itself. If u tried this method and u found urself not in this category then it's not my problem my friend. At least I don't manipulate ppl and tell them that vein ligation's surgery does work while in the realty it's just some snake stuff and skilled surgeons abandoned it long time ago. If abstaining didn't work for u, then try inserting a mechanic device into ur penis and pump ur balls to get erection. This might work for my friend. But vein ligation's surgery is a big lie and u should never open a thread talking about it. Some ppl did this surgery and ended up commuting suicide like gollam so u better watch what u write and check the validity before posting
Title: Re: Very bad situation
Post by: sonnyjim on May 12, 2018, 03:00:45 AM
Quote from: kusher on May 11, 2018, 03:56:51 PM
Ppl get their penis amputated then they do a very long and risky surgery and they end up with an intact penis that can get aroused. And u just do jelqing and end up with an unusable penis???!!!! There is something fishy and missing in this equation..... suicide with pills or without, do u get spontaneous erection or morning wood? Just asking to rule out the mental aspect.. what about u sonny? Any sign of spontaneous erection or morning wood with or without pills?

No spontaneous erections in the last 6 months and morning wood now (taking Cialis 5mg daily) is just basically a larger flaccid.

Title: Re: Very bad situation
Post by: kusher on May 12, 2018, 03:12:50 AM
Keep taking the cialis. Don't stop it. Just because ur not getting spontaneous or morning wood it does not mean that ur not get erection while ur asleep. If u stop pills, this might cause more scarring or potentially fibrosis. I don't get the hard flaccid term? Like ur penis feels solid while flaccid?
Title: Re: Very bad situation
Post by: sonnyjim on May 12, 2018, 03:14:10 AM
No, just slightly more engorged than my turtled flaccid that I have for like 99% of the day.

Title: Re: Very bad situation
Post by: Werther on May 12, 2018, 08:16:19 AM
Quote from: kusher on May 11, 2018, 11:03:27 PM
Whether you like it or not, abstaining has the capacity to heal ed for some ppl and this depends on the severity and degree of ED and the injury itself.

What kind of injuries are you referring to? Do penile fractures heal on their own just by abstaining and without causing ED? Sounds strange to me, since I've always read the contrary...

I'm not saying that abstinence won't ever help recover from ED: my point is that it doesn't help recovering from organic ED; if it's psychogenic, then it could be the solution, but there's no tissue to heal in this case. Healing's process after blood's spill in the erectile tissue only leads to scarring and if scarring has already occurred and has already messed up with circulation, abstaining for months won't do anything to turn things back to how they were before the injury. I'd be very happy if you could prove me wrong: can you provide us with some scientific papers to back up what you claim?

Then, I've never recommended anyone to undergo veins surgery, just opened a thread to ask for information for myself. You're actually the one who's raving about sexual abstinence curing organic ED and recommending it to people. And to make things clear, the fact that gollam committed suicide after sclerotherapy and that in the majority of cases veins surgeries don't seem to work, doesn't mean that they don't work ever: it looks like they can be beneficial in very few selected cases and that's what I've said (you know you can find some guys' positive reports on the web).

By the way, I don't want to flame, just set things straight with regards to the abstinence thing and your Bobbitt's case reference (I really can't understand what penis amputation and reattachement has to do with erectile tissue damages' recovery; even an avulsed tooth can be reattached in one's mouth, but this doesn't mean that caries heal on their own only because they're both traumatic events and avulsion is obviously more traumatic than caries).

Have a nice day.
Title: Re: Very bad situation
Post by: sonnyjim on May 12, 2018, 08:46:54 PM
So there's basically nothing that can be done about this at all? It's hopeless? Why are we all still here then, waiting around like penguins?

With these severe ED problems I am finding it so hard to believe that it's ever going to improve no matter what I do or what I take...

I can't imagine my life being like this from now on, or possibly getting worse, if it even can now.

My only hope is that pentox might work but people have already said that won't work either so... May as well save money for my own funeral I guess.

How can this crap not show up on an MRI or an ultrasound ?
Title: Re: Very bad situation
Post by: NeoV on May 12, 2018, 11:31:31 PM
Sonny, the physical therapies / diet modification and supplements or drugs should help over the years. Try shifting your mitochondria through diet as I have suggested. Mutated mitochondria are there in your penile plaque, and it's because they are mutated from glucose toxicity. Are you doing everything you can? Otherwise it's just a matter of time.
Title: Re: Very bad situation
Post by: sonnyjim on May 13, 2018, 08:26:11 AM
A matter of time? For the ED or the scar tissue?

Everyone just keeps saying that it gets worse over time, not better.
Title: Re: Very bad situation
Post by: NeoV on May 13, 2018, 08:46:58 AM
Almost every long-timer here has had their symptoms improve over time. As for the ED, how healthy are you? what is your body fat %? Do you exercise and have you had your insulin or blood glucose tested by a professional? Testosterone, vitamin D etc?

So many of us have gotten much much better over time.
Title: Re: Very bad situation
Post by: sonnyjim on May 13, 2018, 11:19:13 AM
I'm fairly healthy, physically fit... I am not overweight I have very little body fat actually it's just this ED I can't understand, it came on gradually and I'm pretty sure it has something to do with the lumps on my penis as there's nothing else that's happened. I have two or three rough patches on my penis...

Will my ED improve over time or will I need an implant eventually, I would rather not at the age I'm at (29)
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 13, 2018, 11:28:07 AM
Guy sonnyjim do you want us to tell you the truth or what you want to hear?
You've been asking this question since the beginning and everyone has answered you. ED does not improve over time, ED does not improve on its own.

To treat ED there are several steps: pills, cock rings, injections, implant (or other surgeries with little success like venous or arterial surgery) There is also the option to wait for something to come help with ED or fibrosis

But good if you want false hopes .. you can be waiting for a decade and then see if it is healthy by itself, I've been several years and it has not done
Title: Re: Very bad situation
Post by: sonnyjim on May 13, 2018, 11:45:48 AM
I guess I just want to know what else I could be doing to get rid of these fkn lumps. I feel like if they softened I might be able to get erections again. I feel like they are blocking blood flow or something.
Title: Re: Very bad situation
Post by: cheeznips on May 14, 2018, 08:34:24 AM
coq10 might get soften up that plaque. just keep taking coq10 and cialis, be gentle with your penis, use lube. I use silicon lube by navy something you can buy it on amazon and keep a healthy heart by jogging. A healthy heart promotes better blood flow. i feel like ED does improve over time. just be patient and don't forget to live your life.

i think my ed is improving not sure. I cant really feel my urethra or underside but im waiting till oct 4th for that uro appointment
Title: Re: Very bad situation
Post by: Jack1909 on May 14, 2018, 09:26:41 AM
From my own experience:

ED doesn't improve over years. It rather gets worse.

Nerves improve over years but the sensation won't come back as it was before the injury.

Title: Re: Very bad situation
Post by: sonnyjim on May 15, 2018, 07:12:36 AM
This is f'~c<+d up
Title: Re: Very bad situation
Post by: sonnyjim on May 15, 2018, 04:46:58 PM
Will coq10 do anything for the scar tissue? At least stop it from getting worse? I'm taking Cialis 5mg daily, coq10, l citrulline, l cartinine. If those won't stop it from getting worse I'm just going to save my money.

I have read about people's plaques disappearing or decreasing but mine have only worsened in 18 months, not gotten better.

What else can I be doing to stop it getting worse and possibly make it better ?
Title: Re: Very bad situation
Post by: cheeznips on May 15, 2018, 07:27:32 PM
Im not too sure but i think my ed is getting better its just the numbness man before my second injury i was taking coq10 and it was really softening up my plaque. Ive tried taking ot again but nothing really has changed.
Title: Re: Very bad situation
Post by: kusher on May 15, 2018, 11:34:12 PM
For plaques, the way to go is cialis and penile traction daily. U want the penis to be as elastic as possible to prevent atrophy. U need penile physiotherapy to get the pump going. I don't recommend VED, personally heard alot of horrifying stories about it including irreversible damages. Try the cialis and physiotherapy method till end of summer then reevaluate. Phalson forte is a good option cuz u can wear it for long hours without feeling uncomfortable. Whether u gna restore ur erection or not is unknown... I read stories on the internet of ppl regaining natural erection after injury or trauma within 12-24 months. Also try to modify ur daily lifestyle and see how it goes
Title: Re: Very bad situation
Post by: sonnyjim on May 16, 2018, 12:40:32 PM
Also what is causing my penis to hang so turtled and lifeless? I swear I've gone from like 4.5 inches pretty thick to like barely 3.5 inches and thin and lifeless.

What the F~@< ?

Has anyone ever got somewhat back to normal?
Title: Re: Very bad situation
Post by: JS1991 on May 17, 2018, 12:35:58 AM
Do any of you guys (cheeznips, sonnyjim) have any pelvic floor dysfunction, pain or tightness? Do you have pain after orgasm or after urination? Hard flaccid, soft or cold glans? Reduced bloodflow to spongiosum/urethra?
Title: Re: Very bad situation
Post by: sonnyjim on May 17, 2018, 04:40:49 AM
I don't think I have pelvic pain and can't believe this could cause this many problems on its own but if it was causing this severe ED and shrinkage even with pills I would die of happiness if it could be fixed.

My initial injury (first lump I found) was actually on the underside of my dick, CS. It caused shrinkage immediately and pain and that shrinkage has never returned to my normal size I am much smaller especially when flaccid it doesn't hang like it used to at all.

Sometimes when I am driving I feel tightening in my lower body but I've tried reverse kegels and all of that has made no difference at all.

I just feel like my dick is useless, numb and lifeless.
Title: Re: Very bad situation
Post by: cheeznips on May 17, 2018, 08:15:42 AM
Js1991

Yes im getting reduced blood flow to cs along with numbness to cs and urethra. Im really thinking i have a stricture like i had a microtear in my urethra from the injury. Im forcing my urination in the mornings. Sperm dosent shoot anymore. I really need to see that uro but these damn hospital bills are catching up to me. Maybe the uro can see if i have a stricture or something
Title: Re: Very bad situation
Post by: sonnyjim on May 17, 2018, 06:00:01 PM
I have also recently noticed that I have what feels like a string, but it is deeper inside my penis and harder to feel (maybe why I haven't noticed it before) it is near the base and runs to the middle of my penis...

When I feel my penis it feels like I have quite a few lumps and rough patches so I am not sure why they told me the MRI and ultrasound were both normal, how can they be? I don't get it...

There is no other way to prove that this is physical and not on my head as they have been telling me for the last year and a half.

"I have pain" - "oh, erm... That could be you imagining it"

"My penis has got smaller" - "speak to our psychosexual counsellor" (thinking I just have size issues, I DIDNT BEFORE THIS)

"I feel lumps everywhere" - "everyone has lumps in certain places"

What the F~@
I can't believe this is going to improve even with everything I'm trying to do. It's not just gonna go away or improve if pills don't even do crap is it?

Unless they can amputate my broken and shrunken dick and attach a new one I'm not sure what else can be done. Kind of makes me wonder why I'm holding on to any hope, if they would of helped me and took me seriously to begin with I wouldn't now have 4 different lumps and might only have 1 and a somewhat functional dick.

I can't even get pentox so I have to settle for COQ10, L carnitine, Vit E and Cialis. Is this a good enough treatment to actually improve things? I'm willing to take these pills forever if this crap will just go away.
Title: Re: Very bad situation
Post by: JS1991 on May 18, 2018, 10:27:28 PM
Do you think you might have CPPS? Symptoms are hard flaccid (shriveled, turtled), difficulty achieving and maintaining erection, soft/cold glans and deflated spongiosum, tight pelvic floor, loss of sensation in penis , and pain after orgasm or urination, occasionally centered in the urethra. It could be a combination of CPPS and Peyronie's (the lumps) which is what I have been diagnosed with (although I do have a 15 degree curve). Maybe it's hard to see these lumps (which have progressed since your last test) when you can't maintain a full erection during testing? You weren't able to get Pentox through mexmeds4you? I just ordered from them last week.
Title: Re: Very bad situation
Post by: Christopher1 on May 18, 2018, 11:50:17 PM
Mexmeds4you is your pentox source?
Title: Re: Very bad situation
Post by: cheeznips on May 19, 2018, 10:46:47 AM
i don't think i have cpps. maybe i did, but probably not anymore. Right now, i probably have a stricture. when i ejaculate i no longer shoot. numbness in urethra and underside of penis is making it harder and harder to hold erections. I miss the days where i could feel me sperm flow through and out my urethra. what a pleasant feeling. sigh... well i'm gonna call the urologist to see if i can expedite my appointment. i must have damaged the nerves along with causing the stricture. idk...
Title: Re: Very bad situation
Post by: sonnyjim on May 20, 2018, 09:45:15 AM
I don't think it's CPPS I think it's scar tissue that has just progressed and got worse. I have been taking Cialis, Arginine, Coq10, L carnitine and Gingko since day one and nothing has improved. What confuses me is people on here saying their situation has improved by taking these pills and supplements because I haven't. Only got worse...

I'm wondering whether I can actually recover from this or not and if it isn't peyronies (MRI and ultrasound nothing shown) then what are the lumps and rough bits on my dick ?
Title: Re: Very bad situation
Post by: Afeb1996 on May 23, 2018, 04:32:31 AM
How much L Carnitine are you taking?

And is it ACETYL L carnithine? That's the one from the study. They are different?

Also coQ10.. is the main ingredient UBIQUINOL?

How many milligrams are you taking of each?
Title: Re: Very bad situation
Post by: Afeb1996 on May 23, 2018, 04:33:28 AM
How much L Carnitine are you taking?

And is it ACETYL L carnithine? That's the one from the study. They are different?

Also coQ10.. is the main ingredient UBIQUINOL?

How many milligrams are you taking of each?
Title: Re: Very bad situation
Post by: sonnyjim on May 23, 2018, 12:50:59 PM
500mg COQ10 and 2g Acetyl l Carnitine
Title: Re: Very bad situation
Post by: cheeznips on May 24, 2018, 10:59:50 PM
has anyone know how spongiofibrosis associates to a urethral stricture?

i need to know if i remove this stricture if it will give me back my nerves to the underside of my penis and stop causing this hard flaccid. and stop causing my penis to be uncomfortable all the time.

im pretty sure i have a stricture because whereas i used to shoot sperm pre last injury i dont shoot anymore. also it feels like my urine is being blocked when i pee.

and it feels like my urethra isn't dialating properly
Title: Re: Very bad situation
Post by: cheeznips on May 28, 2018, 12:52:23 PM
Sonnyjim have you gotten better?
Title: Re: Very bad situation
Post by: sonnyjim on May 28, 2018, 02:02:58 PM
No... Not at all.

I have been taking Pentox for 4 days, no difference yet but people have said it takes a long time to work.

My thinking is if I can soften the scar tissue somehow that my penis will hang more normally and maybe erections can happen but maybe that is wishful thinking.

If not, I will eventually kill myself and I've accepted that fact already.
Title: Re: Very bad situation
Post by: cheeznips on May 29, 2018, 03:26:54 AM
Sigh... atleast you didnt just have a kid. I have a new born coming and im still f'~c<+d up from the injury and its been mentally F^@$!ng me up. Im so worried that i wont be able to hold a job because of how anxious i am because my penis is so numb. I still cant feel my urethra and my entire cs is numb and im supposed to help take care of a newborn?
Im really trying to keep it together man.
Title: Re: Very bad situation
Post by: sonnyjim on May 29, 2018, 07:18:01 PM
Yeah but at least you can still have sex I guess...

I can't even get an erection with 100mg and 20mg Cialis combined...

What hope is there that this will improve even if pentox does work for me ?
Title: Re: Very bad situation
Post by: cheeznips on May 30, 2018, 02:34:27 AM
If you want to talk on discord then let me know.
Title: Re: Very bad situation
Post by: JS1991 on May 30, 2018, 09:39:44 PM
Once again, for a lack of hope and statements of suicidal thoughts I provide the following opinions: I seriously think it might be CPPS; hard flaccid and sensation loss (specifically cs and glans) are hallmarks of this condition. And once again, consider stem cell treatment if you are that desperate. I am nowhere near as desperate and I am going through with it.

sonnyjim, I'm glad you are at least trying the Pentox out. Good luck!
Title: Re: Very bad situation
Post by: sonnyjim on May 31, 2018, 07:02:37 AM
Could pentox improve my ED at all though? I haven't read much about that. The two biggest problems are the shrinkage (more so when flaccid) and the ED.

What can pentox do for me?
Title: Re: Very bad situation
Post by: suicidecomingsoon on May 31, 2018, 09:44:51 AM
no more than cialis or viagra really
Title: Re: Very bad situation
Post by: JS1991 on May 31, 2018, 06:07:44 PM
I personally got hard flaccid symptoms less often, allowing me to apply traction more often. My penis just felt softer overall, which makes sense due to the function of pentox: it thins the blood out, allowing it to reach smaller capillaries and provide better blood flow. Will this cure you? I don't know. But it seems to be a logical option. At the very least, these plaques you believe you have will progress no further than they already have.
Title: Re: Very bad situation
Post by: sonnyjim on June 01, 2018, 01:56:13 AM
I don't think it would matter that much if they did get worse at this stage because I have zero function anyway. No semis no erections just a permanently turtled flaccid way smaller than what it used to be...

I just want my size back to how it was I could deal with the ED (not forever obviously) but it is psychologically hard knowing you are walking around with a tiny dick as well.

Wtf man.
Title: Re: Very bad situation
Post by: gigikious on June 01, 2018, 07:39:35 PM
I had a stage surgery for congenital curvature combined with egydio grafting after i also got peyronies.
Sadly the stage failed and my penis has  again the downward curve as it were before.
I was using VED and tracktion device daily for 7 months post surgery and had almost the same ED problems like yours.
I was  so depressed(still am) angry and suicidal thinking all the time that i've been deceived by my dr. and destroyed my dick.
I stopped VED about a month ago and while my penis is fully curved my ED  thankfully is almost gone.
Dont give up keep excercising daily and eat heathly you're both too young 23 & 29 and your ED might get better.
Im not trying to give u false hopes but in my case my psychology was only making things worse.Stay strong



Quote from: sonnyjim on May 16, 2018, 12:40:32 PM
Also what is causing my penis to hang so turtled and lifeless? I swear I've gone from like 4.5 inches pretty thick to like barely 3.5 inches and thin and lifeless.

What the F^@% ?

Has anyone ever got somewhat back to normal?
Title: Re: Very bad situation
Post by: gigikious on June 01, 2018, 07:45:43 PM
Let me add that bad erections made my dick to also look so tiny,but now that erection is improved i think it has the almost same size as before.I'll keep using tracktion device 2hourz daily
Title: Re: Very bad situation
Post by: kusher on June 01, 2018, 09:11:18 PM
For how long did u the have ed? After how much time did it disappear?
Title: Re: Very bad situation
Post by: cheeznips on June 02, 2018, 01:43:13 AM
Man im so F^@$!ng worried that i tore my urethra from my last injury. My urethra feels completely dead like the skin feels dead. My appointment is in june 6th. If anyone wants to talk about this voip let me know.
Title: Re: Very bad situation
Post by: gigikious on June 02, 2018, 07:36:15 AM
I had it for 3 months.Now i'm heading to the 8th month post surgery and it almost disappeared.I think VED was making it worse so i only use the traction device.
I hope you will also get better!


.
Quote from: kusher on June 01, 2018, 09:11:18 PM
For how long did u the have ed? After how much time did it disappear?
Title: Re: Very bad situation
Post by: cheeznips on June 02, 2018, 09:30:13 PM
is anyone down all the time? i don't know if it's because my brain isn't releasing dopamine or something but i am always feeling down.
Title: Re: Very bad situation
Post by: Werther on June 02, 2018, 10:05:07 PM
What kind of answers are these? If you don't suffer from particular conditions it's pretty likely going to be what you've already answered after your same question (a.k.a. clinical depression).

By the way I didn't know that sonnyjim's thread had become a place for everybody to vent out about every single problem one could have. Guess I'll have to use it like this too in the future...
Title: Re: Very bad situation
Post by: cheeznips on June 04, 2018, 01:55:25 AM
i mean we all pretty much share similar symptoms and most of our peyronies probably started with penile fractures with some kind of damage to cc or cs.
Title: Re: Very bad situation
Post by: TonySa on June 04, 2018, 11:01:22 AM
I think this thread has evolved into one where guys express their hopelessness which for some of us is so severe that it leads to suicidality.  It's so important to get mental health treatment then (or sooner) and not become another casualty of this disease.
Title: Re: Very bad situation
Post by: sonnyjim on June 04, 2018, 01:41:05 PM
For me it's not even about suicide it isn't like I haven't tried everything I possibly can it's the fact I don't even know what is wrong with me and no urologists are helping me I feel like I'm just waiting around to die.

The lumps I have (which they are saying is not peyronies) have not shrunk at all only gotten bigger and my ED has only worsened to the point now where pills do not even work and they are still telling me it's psychological and think I'm making this crap up.

What kind of a retard would make up a year and a half of pain, ED and shrinkage ? It's F^@$!ng embarrassing. Psychologically the hardest thing I have ever dealt with and to be honest the loneliness is killing me, I have never felt so crap in my whole life and it looks like the whole situation is just hopeless.

What can actually be done to improve this? An implant? Nothing else works. This condition is F^@$!ng hopeless might as well just kill yourself really, all these things are just money making schemes NOTHING can actually help us were f'~c<+d.

Sorry but after a year and a half of desperation and hopelessness this is what I actually think.
Title: Re: Very bad situation
Post by: cheeznips on June 04, 2018, 08:28:02 PM
yeah its pretty hard to keep it together. I Just got a job for an internship and i had a hard time keeping it together today. I have this constant feeling of wanting to touch the underside of my penis just to check in any nerves have came back, which they didn't. underside, urethra are completely numb. although, my erections are getting a lot better. numbness very much affects my psyche, and i have a baby on the way so that just add on my stress. I know if i just had my nerves everything in life would be 10x easier.

i also have a uro appointment to check to see if i have a stricture on Thursday. so that's nice to know.
Title: There is hope with Photomodulation Therapy
Post by: PhotoBioModulationTherapy on June 07, 2018, 04:01:21 AM
Quote from: sonnyjim on June 06, 2018, 02:22:46 PM
How am I reading posts from people saying their scar tissue/plaques have disappeared after a few years if it doesn't really ever go away?

Does it eventually go away or is this it? And if it does, does that mean function returns as the scar tissue goes away ?

Plaque is a combination of scar and inflammed swollen tissues. The key to any inflammatory and slowing scarring disease is Suppress the inflammation ASAP. I have read way too much on these sites and the recommendations in the mainstream medicine about waiting 6 months since many patient's disease will stop progressing. Foolish thinking that has arisen out of little effective therapy in the past. I have jumped on my personally and recently diagnose-confirmed Peyronie's Disease is using my high intensity diffuse beam laser (980nm) called PhotoBioModulation Therapy. Here's my posting from earlier this evening as a newcomer to this forum and as a newly diagnosed patient but who is a laser surgeon of 35 years experience with medical laser. The key is early and aggressive anti inflammation treatment and figuring out the underlying cause of your penile trauma. I hope this opinion and personal opinion helps:

"PhotoBioModulation (Low Level Laser) Therapy is definitely working for my Peyronie's disease. At age 59, I started having painful erections 4 months ago and four weeks ago my wife first noticed a upward curve to my penis. Last week my PMD confirmed my self diagnosis that I had Peyronie's Disease with a slight palpable hardness, a developing plaque, just at the base of my Penis and just off to the left. Three(3) two(2) minute 50 watt diffused-beam 980nm laser treatments in the past four days has reduced my ejection pain by 50% and reduced the curvature by a small amount. I am from Green Bay, Wisconsin and will continue these high intensity laser treatments every other day and avoid intercourse for 6 full weeks to allow the laser therapy to suppress the chronic inflammation and to aid the inflamed/scarred tissue plaque to heal. Also, I will not allow my wife to rock on my penis any further as a foreplay method since I now realize, this pressure and rocking on my penis shaft, is likely the 'trauma source, that has triggered my particular case of Peyronie's Dosease for at least 6 weeks. As a laser surgeon of 35 years, I suspected this PhotoBioModulation therapy and treatment approach would work and I also realize this type of intervention is foreign to most lay people. I will also produce an erection twice a week during this six week treatment since it's logocal to try a bit to reduce the upward curve while receiving these treatments since whatever reversal on curve I can achieve will only be open to possibility during this important period of time during the suppression of the underlying inflammation and the healing of these inflamed-scarred-plaque tissues. This knowledge of treating inflammed and partially scarred tissues is no different than any other inflammatory disease the body. This posting is for those guys out there who have been recently diagnosed and I know the sooner one gets the inflammation under control and the traumatic source figured out and stopped, the less function and less chronic pain with erections you are likely to have. The research on PhotoBioModulation Therapy in treating and curing Peyronie's Disease is sparse but that's because of ignorance in my colleagues in mainstream  medicine who have been exhausted by the insurance companies to keep coverage for these cutting edge laser treatment modalities suppressed to avoid opening the expensive realm of having to start paying for laser therapy for the masses. I would be happy to communicate to any guy suffering from this disease via text messaging at 920-242-2541."
Title: Re: Very bad situation
Post by: cheeznips on June 08, 2018, 08:08:29 PM
so i went to the urologist and he said he wants to do a systoscopy, retrograde urethrogram and a possible dviu if there are any strictures. he said i could of had a micro fracture in the injury, which possibly damaged the nerves, and even if i get rid of any stricture my feeling of my urethra and underside of my penis might not come back. im pretty scared. total will be 1800$ in the surgery center andif i only do the cystoscopy it will be $277 in clinic
Title: Re: Very bad situation
Post by: cheeznips on June 17, 2018, 03:18:45 AM
sonnyjim

do you have any pain after erections or pain with erections?
Title: Re: Very bad situation
Post by: sonnyjim on June 17, 2018, 02:04:40 PM
No, I did at first 1 1/2 years ago but it went away after about 6 months. All I have now is a permanently smaller dick and weird sensations when flaccid...

Title: Re: Very bad situation
Post by: cheeznips on June 18, 2018, 12:32:15 AM


do you have any problems when urinating? such as having to strain when you urinate? or any pain after you urinate?
Title: Re: Very bad situation
Post by: sonnyjim on June 18, 2018, 06:49:47 PM
No...

Literally my penis feels like no feeling at all, I can squeeze it, pinch it, stretch it, it stays turtled with no pleasureable feeling. I cannot get an erection without 100mg Viagra and a lot of manual stimulation if I stop stimulation it goes down straight away. Never any spontaneous erections or semis anymore, never any morning wood and even when I am erect through manual stimulation I have basically no feeling of fullness it's hard to explain

My penis basically feels like a shrunken useless piece of rubber. I dunno if science can even help me at this point since I still don't know how it got this severe

I am struggling to hold it together as I have lost pretty much everything that made me happy. My gf, my dick, my self esteem, what I was, basically gone... It's like a bad dream that I cannot wake up from.
Title: Re: Very bad situation
Post by: JS1991 on June 29, 2018, 02:26:52 AM
sonnyjim, I came across this thread and thought of you. It is a thread on hard flaccid:

Link deleted by moderator! Read the forum rules!

The person who posted it has experience with a plethora of hard flaccid cases, and posted the following three reasons as most common causes:

1: Muscle tension (most common).

2: Circulation problems.

3: "Nerve damage... I would estimate no more than 10% of men have this kind of problem. That being said, nerve damage takes the longest to heal and is the most painful. Don't lose hope though, it can be overcome."

So again, it seems time will help. The person who posted this fixed his issue by water fasting for 7 days straight, which essentially reset his body. So, maybe it's worth a shot, given your desperation?

I might just buy Obitoo's stupid $40 "Hard Flaccid: Unraveled" book, which is essentially a collection of 90% of the information on the internet regarding hard flaccid boiled down into a book, and scour it for information for you on anything nerve-related. I can't stand seeing a fellow human suffer.
Title: Re: Very bad situation
Post by: sonnyjim on July 05, 2018, 09:17:39 AM
Thanks for your advice JS.

I would love to believe that this is something like hard flaccid but I don't believe it is. I watched this get worse (ed, shrinkage, sensation) like my penis is rotting from the inside I guess.

I don't know what else to do now... 1 +1/2 years of dealing with this crap now I can't believe I will ever really be normal like I was.
Title: Re: Very bad situation
Post by: cheeznips on July 05, 2018, 11:25:31 PM
yeah, i know the feeling. i feel the worst as soon as i wake up, i feel like complete crap because my penis is so numb. when i touch the underside of my penis it feels like i'm touching cardboard sometimes. its pretty depressing.
Title: Re: Very bad situation
Post by: SofaKing on October 23, 2018, 01:00:51 PM
Sorry for resurrecting this thread but to the men suffering from ED that pills are not working for I implore you to give injections a serious try.  I to have injured my self with extreme penis pumping sessions and now I have a red wrinkly dick for two years now.  First pills worked then they started working infrequently.  If pills ever did work for you this may be a sign that you DO NOT have a veinious leak.  Injecting has been working good for me for the last 6 months.  Injecting at the doctors office is not a serious try because those injections are kinda weak and you are in a uncomfortable environment which you can not masturbate and even if you could it would not be pleasant.  A lot of men find that when they first inject it doesn't work.  They will keep increasing the dose until they achieve a decent erection.   At this point most of them start decreasing their dose because the injections suddenly start working.  Kinda like the first few times I smoked weed and didn't get high.  Onto the injection strengths....  the doctor for the Doppler will give you the weakest one.  The strengths are as follows....  Alprostadil < bimix < trimix < quadmix.  So Alprostadil has one ingredient and you can go up to 100 units in a shot, the doctor will only give you 20 units.  As for bimix it has two ingredients, trimix has 3, quadmix has 4.  The pharmacist can increase the amount of ingredients in said bimix/trimix/quadmix to make a even more potent version of the drug.  Please message me or write here if you need help obtaining these drugs.
Title: Re: Very bad situation
Post by: Pfract on October 23, 2018, 02:03:13 PM
This looks a bit odd for a first post...
Title: Re: Very bad situation
Post by: SofaKing on October 23, 2018, 02:46:53 PM
Sorry for it being a wall of text :/  I am a member to two other forums relating to ED and have suffered some major depression and anixity from it.  I have tried many things to combat my ED and want to share my story because I feel there are men out there that would benifit from it.
Title: Re: Very bad situation
Post by: JS1991 on October 23, 2018, 05:17:47 PM
Two questions: Can you please explain in detail how your vaccum device habits and how you injured yourself using it?

Is it difficult to self-inject? I want to self-inject into my penis without training, how dangerous is this?
Title: Re: Very bad situation
Post by: SofaKing on October 23, 2018, 06:21:07 PM
1
I went above 8 HG my electronic display said 35 HG.  I believe the 35 HG displayed may have been inaccurate after talking to a few guys about how fair their pumps pressure gauge goes and believe it actually to be in the 20s and still very high and dangerous.  I pumped regularly almost daily for 2 months and now my penis is considerably darker and theres alot more skin that looks like crepe paper.  I have had ED since pumping which has now been 2 years.

2
Injecting is easy, I lightly grab/pull the head of my penis to my upper inner thigh.  Then I inject in the side of my penis into the cavernosa.  It dosnt hurt much and my brain has associated any pain as a good thing and know a boner will soon happen.  please read/watch material on the internet for a full description if your not going to have a doctor train you.  The doctor will want to have you do the first injection in their office unless to lie and tell them you have done Alprostadil before but it is no longer working and you are looking for something stronger that your current urologist wont prescribe (this is what happened in my situation).  I actually did have a previous doctor who was only willing to prescribe Alprostadil (caverject brand name) which is the weakest and also the most expensive.  My new doctor who prescribed my trimix took my work that I allready tried Alprostadil and that I have had a penile doppler done, so you could probably just lie to your doctor instead of going through all the steps i went through

3
Learn about priapism and how to treat it.  Its common for it to happen to newbie injectors and if you have a erection lasting 4+ hours you are recommended to come to a hospital and have them pull the blood out of your penis with a 18 gauge syringe.  This actually dosnt hurt much, I dumb so I have had to do it twice.

4
Your first urologist might not prescribe bimix/trimix/quadmix.  Google local compounding pharmacys (compounding pharmacys make their own drugs unlike walgreens).  Get the number of a local compounding pharmacy and call them to ask which doctors/clinics do they supply their trimix drugs to.