Very bad situation

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Sadguy

Please go to PROFILE then FORUM PROFILE to replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc

sonnyjim

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

Sadguy

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
Please go to PROFILE then FORUM PROFILE to replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc

sonnyjim

So there is literally nothing I can do now? Just sit around?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tychy

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.  

diehardpatriot

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  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

NeoV

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.

sonnyjim

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

cheeznips

Tingly senseation is good news its a sign nerves are healing. I read it a while back.  

sonnyjim

It feels like it could also be new damage

From VED since it only started after I started VED.

I really hope not
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

cheeznips

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.

NeoV

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.


cheeznips

How are your erections coming along? Any improvment?

sonnyjim

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

cheeznips

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?  

sonnyjim

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

cheeznips

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.

sonnyjim

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.

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

diehardpatriot

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.  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

sonnyjim

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

Werther

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.

diehardpatriot

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
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Paolo

sonnyjim, have you tried any supplements, and if so have you taken any regularly??
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

sonnyjim

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...



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

Paolo

sonnyjim, I am going to PM you with a few things  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Werther

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.

Jack1909

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...
31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

cheeznips

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 .)

sonnyjim

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

TonySa

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

sonnyjim

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

Paolo

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
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

sonnyjim

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

Paolo

sonnyjim, I know you are in the UK, so am I, I will PM a message  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

sonnyjim

As I cannot get a prescription for Pentox will any of these supplements actually improve or stop this from progressing?  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

Also I doubt I am in the acute phase now after a year so will these supplements still do anything ?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

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.

Paolo

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  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

sonnyjim

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

PeetyPeet

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.


sonnyjim

Are you being told your issues are psychological as well?

There must be something we can actually do.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

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.

sonnyjim

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?

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

TonySa

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

sonnyjim

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

cheeznips

I mean my last injury I actually heard A crack and I definitely injured myself but still nothing showed up in doppler.  

sonnyjim

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

cheeznips

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.

sonnyjim

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