Very bad situation

[PeetyPeet]

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.  

[sonnyjim]

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  

[sonnyjim]

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.

[TonySa]

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.

[sonnyjim]

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 ?

[TonySa]

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.

[sonnyjim]

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?

[TonySa]

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.

[sonnyjim]

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.

[sonnyjim]

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.

[PeetyPeet]

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.  

[sonnyjim]

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?

[sonnyjim]

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...

[sonnyjim]

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.

[TonySa]

SJ, are you getting any counseling support for your depression as a result of this devastating disease?

[sonnyjim]

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.

[TonySa]

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.

[cheeznips]

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

[sonnyjim]

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  

[cheeznips]

Did you fracture it or something? Are you not getting morning erections?

[sonnyjim]

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.

[LWillisjr]

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?

[sonnyjim]

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?  

[Hrvat21]

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.

[Paolo]

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

[sonnyjim]

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.

[cheeznips]

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.

[sonnyjim]

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.

[TonySa]

SJ , what are you Doing to overcome this?  

[sonnyjim]

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

[TonySa]

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?

[sonnyjim]

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.

[cheeznips]

Let us know what he said? Also what was the injury? What happened?

[sonnyjim]

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.

[cheeznips]

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.

[sonnyjim]

I have pretty much lost everything that was inportant to me and it's still going on.

[cheeznips]

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?

[Tychy]

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 :/

[cheeznips]

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

[PeetyPeet]

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.  

[PeetyPeet]

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.  

[JS1991]

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.

[cheeznips]

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.

[Paolo]

That's great to hear, hope some feeling returns soon  

[JS1991]

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).

[cheeznips]

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.

[sonnyjim]

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.

[sonnyjim]

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.

[TonySa]

Is Raheem a peyronies specialist?

[sonnyjim]

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.