Still have erectile dysfunction with implant…

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Pfract

Dr Eid recommends Muse intra urethral drops to help with your soft glans. Have you tried it?

sonnyjim

I've tried muse and Vitaros, muse does nothing at all and Vitaros does very little but I get a little bit more 'engorgement' of the glans but only if I constantly manually stimulate myself. The moment I stop, it deflated again. So neither of these are of much use to me.

The only way I could potentially improve this I think is if I could affect the scar tissue somehow. The scar tissue blocks blood flow to the glans. I can feel it squeezing my penis literally all day long, it's kind of disturbing.

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

Pfract

Perfect. There's your solution.

Vitaros helps while these is stimulation, right? then.... if you inflate the implant and then have sex..... you will be stimulated, by the vagina.... right?

so.....?

sonnyjim

No, I literally don't feel anything during sex since I had this injury 6 years ago.

I have to manually stimulate myself constantly (and fast) otherwise the glans will not engorge. I also cannot ejaculate during sex and it takes me a very long time even when I'm on my own.

There has to be another solution surely.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Ballasto

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sonnyjim

I wouldn't know mate, I've never really tried it.

If fasting could have any affect on the scar tissue then it could work, in theory. It always just seemed to good to be true so I never tried it.

Was that supposed to be a question or more like a suggestion?

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

Ballasto

Haha. I misread your post

I have to manually stimulate myself constantly (and fast)

Some guys claim fasting helps things...so I was curious if you were experiencing that too but you meant fast, as in speed!
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sonnyjim

Things like shockwave therapy, would I even be able to have that now when I have an implant?

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

LWillisjr

Why would you even be thinking about shockwave therapy if you now have an implant?
Is the implant not working correctly?
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

sonnyjim

The implant works correctly, the rest of my dick doesn't.

I have scarring to the corpus spongiosum which prevents my penis from expanding, it was like I tore my penis and now there is a line of scar tissue that goes around the shaft.

I was hoping that if I could affect the scar tissue somehow that I would be able to regain some sort of function and maybe cure my soft glans.

Even though I have an implant I still can't have any kind of sex life because I have soft glans, the corpus spongiosum doesn't engorge and I don't have much sensation at all, certainly no sensation in the glans.

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

sonnyjim

Anyone know whether shockwave therapy is safe to have if you have an implant?

I need to improve my situation and the only way for me to do that is to somehow reduce the scar tissue that blocks blood flow to the glans.

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

Ballasto

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sonnyjim

I get some blood flow I guess, just not enough to make the glans engorge properly. I have white patches on the glans which obviously shows that not enough blood is getting there.

I have literally tried everything to fix this issue, I have a penile implant at the age of 34 and I still cannot have a normal sex life. This crap is not fair.

The original injury was to the corpus spongiosum and now there is a hard line of scar tissue there which stops my penis expanding so I never get fully hard, I have a totally numb penis and I cannot ejaculate or feel anything during sex.

The only way I can ejaculate is by using my hand and even then it takes a really long time. I have tried everything to soften the scar tissue, thinking that maybe things would at least improve from how they are now but so far no luck. The scar is still as hard as it's always been.

I can't imagine dealing with this forever to be honest.

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

Sonic

Sonny, When was the last time you visited a doctor and did a proper exam to try figure out what is going on?

It is truly a shame if they can't help you. I hope you find a doctor who can figure out the problem.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

sonnyjim

I've been so many times but no one seems to be able to actually help me. I've had about 5 ultrasounds, mri's etc but nothing showed 'anything abnormal' even though I can physically feel there is a lump there...

Ive tried every supplement, everything suggested on this forum and elsewhere and nothing has improved in 6 years.

I'm currently trying shockwave therapy and injecting BPC 157 which was suggested to me by another member of these forums but so far, no luck.

I don't know whether it's the location of the scar or something but I just don't feel the rush of blood you get when you take Cialis or viagra anymore and I literally have no sensation at all.

All this and I stupidly thought an implant would allow me to have some kind of a sex life but no, I think I'm too badly damaged to ever have a sex life again.

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

Sonic

A lump doesn't equal it having to be a scar. It could be something else. Usually if the lump is big enough to be felt it will show up on an ultrasound and the fact that you have had 5 which showed nothing indicates there's not much plaque left. Also why are you doing shockwaves when your corporal tissues have been replaced with cylinders my friend that's like putting hair styling gel on a completely bald head.

I would also be very careful with injecting stuff into the dick, that's a recipe for scar buildup but someone else needs to chime in here because I am very confused. Why would it even matter if you have scarring or plaque anymore when you have cylinders which do the job?

Isn't the blood rush loss due to the fact that it's cylinders expanding with fluid and not an natural erection?

I thought that happens to everyone with implants.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

sonnyjim

No, the injury was to the bottom side (ventral) so even though the cylinders inflate, the part of your penis which allows blood to flow to the glans has a scar so, I don't get glans engorgement and the bottom part doesn't engorge either which means I basically have two cylinders with skin around them... and no sensation in my entire penis.

Bearing in mind the corpus spongiosum is also part of your girth, my dick is so narrow without that part engorging that I'd probably struggle to bring pleasure to a hamster.

On rare occasions my entire penis does engorge but that is either after I abstain for a ridiculous amount of time or I masturbate and use a cock ring and everything else which simply doesn't equal a very good sex life.

The numbness is the worst thing though.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Indenialguy

Firstly, merry Christmas all.

Secondly, if your penis can fully engorge on some occasions that would imply it still can in general. You speak in a lot of absolutes about your sex life being over and your penis being totally broken, and I can only imagine the stress and hell you've been through over the last few years (well actually I guess us people in this forum don't really have to imagine too hard aha) but it seems like if your penis is capable of working occasionally, the idea that the blood is unable to get through wouldnt make much sense, because if that was the case your penis would never fully engorge. There must be another reason why it doesn't work consistently, whether it be physiological or psychological.

I'm not a doctor, but the fact it can sometimes work means it still can general, that would give me some hope at least if I am ever in your position that some sort of more sustained recovery would be possible.

Keep fighting, keep going, I don't have the answers but you have my support, and I'd say you still have more than a fighting chance of getting this sorted.
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

sonnyjim


I already have a penile implant and I still can't have any kind of a sex life because my penis has no sensation. It might as well not even be connected to my body that's how bad it is. During sex, I literally feel no pleasure at all.

I feel depressed because the very thing I most need in my life I cannot have. I have to live like a hermit, hiding away from women when a few years ago I used to love my life.

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

Pfract

Sonny! We missed you man.... How you been lately, besides the implant?

sonnyjim

Yeah aside from the fact I have had no woman in my life for 6 years, no love, no intimacy... and I'm being treated like an Alien by people at work because I went for a drink with a woman, yeah not too bad.

Nobody tells you that nothing changes this condition. No supplement, injection, cream, machine does anything to change this.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Errorhuman



I think you have any venous leak, cs noy filling blood because vein enlarge
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Hawk

Sonny,  I have to conclude that you have serious psychological issues (body dysmorphia, OCD, etc).

You cannot have Erectile Dysfunction with even a half-assed implant surgery.

I think you need to actively find and consult with a GOOD psychologist and a psychiatrist.

Keep in mind that even if it is true that you have a physical cause for feeling no sensation in your penis, this does NOT stop you from the pleasure of meeting women, having intercourse, and getting pleasure out of the MANY ways you can give pleasure.  You can, of course, have an intimate relationship. To withdraw from that is poor decision-making on your part regardless of how your penis might feel to you. Living like a hermit is a poor choice, not a necessity or a requirement.

Also, in reference to the last post.  Venous leakage has ABSOLUTELY NO bearing on a penis with an implant.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

It is purely a problem with the corpus spongiosum not filling, I don't have a problem with the implant. It does what it is supposed to do.

If only the rest of my penis would engorge properly I could be happy. My ED was caused by damage to the spongiosum, the glans does not fill either and so... very little sensation and very little pleasure.

I literally feel nothing during intercourse.

Is there anything that could potentially reduce the scar tissue and give me back something at least?

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

Hawk

Sonny, so what is the real problem?  The fact that you are obsessing that the spongiosium (which IS the Glans)does not engorge (which you knew going into the implant because we covered that extensively).  That is the case with EVERY MAN WHO HAS TOTAL ED. That does not keep men with total ED from having normal pleasure and orgasm.

What will probably help is good mental health counseling.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

olowshinenine

I read this entire thread and wanted to hear more about the bpc157 anyone having any luck with this concerning the penile fibrosis and scarring?
Diagnosed after two uro visits march 2023. physical exam no ultrasound
Noticed upward bend october 22.
currently on 5mg cialis and using hot rice sock. trying to find right traction device
Pain started 12 2022.

Hawk

Have you read the Peyronies Survival Guide?

If it is not mentioned at all in there, then it is because there is NO evidence it works, and shockwave is known to cause more damage.

All you have to do is glance at the link at the beginning of this post to know it is a very unprofessional site geared at getting your money.  I will probably deactivate the site.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Nothing in that guide works either.

Nothing works, full stop. Apart from traction if you have a curve, nothing works.

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

Jayjay999888


Jim its 2023. Been reading some of your posts and related and made an account. Have you had ANY improvement of ANY problem since you joined?

I seem to read posts ALOT regarding issues with loss of feeling, no sensitivity, peyronies, Erectile Dysfunction etc.

The posta go on but are NEVER concluded. I've maybe read like 3 across the entire span of internet forums of any actual results from any methods of improvement but 99% of the time we never hear back from the OP. It just goes unchecked.

I wonder now if its even possible to fix. Odds are looking slim for us my friend. My problem is my dick bent during sex and one half of my dick lost pleasure. I can barely feel anything and only one side of my dicm actually works like it used too. Even the dick skin has gone a different texture.

I'm praying for you my friend for whatever F^@$!ng good thats worth
 Get back to me ASAP.
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Pfract

Hey JayJAy... Can you please write an introductory post in the proper section of the board?


There are solutions here! Please stick with us and let us know how it started.

sonnyjim


No improvement at all.

I have scar tissue which prevents the corpus spongiosum from working, basically. And of course the glans doesn't really get bigger because of that.

It's been 6 years now and with the things I've tried in all of that time, I doubt it could ever get better.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Jayjay999888


I appreciate you taking the time to reply man. One question I have. Is there anything you HAVEN'T tried? I mean at this point if there's no feeling and no erections then maybe an extraordinary circumstance calls for extraordinary measures. You might aswell try the wackiest Chinese medicine out there right?

If science is failing you then go to the supernatural or oriental methods. What else have you got to lose? There's always a slim hope My friend. Might aswell go out trying than giving up, no matter how hopeless it feels.

Anyways, that aside. How are you within yourself? Do you work? What's your day involve? How do you cope? Do you have relationships still? Friends?

What's the future goal for sonnyjim? I read a post about your gf and I'm sorry about that brother. Just tell me how your doing in life atm.

This crap can really get to you if you let it so don't let it.
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Jayjay999888

Yeah sorry dude I will make introductory ASAP. I tried but can't figure out how to so I'll do it on desktop
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LWillisjr

Just go to the following link and post a new topic there introducing yourself. You will get a better response there than tagging on someone's existing post.

Introductory Board
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

rxaxa



crap bro...I know exactly what u going through. My CS is completely dead. Totally flat gone. Cant get any sensation. 

Its mind opener. People dont realize its light and day with regards to senstigity when you CS is not working. Like Sonny said its just to 2 stick nothing more.

I am in similar issue....

sonnyjim


Do you have an implant as well?

Unfortunately, with everything I've tried I don't think anything would work now. In 6 years I've probably tried everything I've read on this forum and nothing works. I just have to somehow accept this and live with it.

It makes me feel so depressed knowing I will probably never have a sex life. 
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Andy_1492

Hi, out of curiosity have you been in a long term relationship since your injury. I have similar issues to you, with gland not engorged and lack of sensitivity and inability to orgasm during sex. Though I find once I'm in a trusted relationship I gain more confidence and I gain sensitivity as I become more relaxed. I think after such an injury you have to figure out and retune yourself, which is difficult to do in casual relationship. I was in a similar dark place thinking I was defective and worthless, but after finding the right person I was able to rediscover snd build on the vistages of my sexuality. I think I was fortunate that I didn't have sex before the injury so frankly I don't know what I am missing, so it is what it is for me.
30 yo - Single
Dent and relatively mild ED 2012
Worsening in 2021 with a slight curvature and increased indentation
1000mg l-arginine/500mg l-carnitine/133mg Vit E

Andy_1492

^should probably just elaborate to say that my ability to orgasm during sex returned over time. The first time with my new partner I could barely get an errection, had no sensitivity, and no orgasm. I basically told her I think you should find someone else as I'm hopeless, but it has got better to the point we can have a mutually satisfying sex life. I know I have organic problems; I haven't had a full spontaneous errection in over ten years, but the psychological aspects can't be understated either.
30 yo - Single
Dent and relatively mild ED 2012
Worsening in 2021 with a slight curvature and increased indentation
1000mg l-arginine/500mg l-carnitine/133mg Vit E

Sonic

As there is a chance I might end up with an implant myself in the future I have been reading into this more and it is indeed quite frightening that this happens to some men and even more frightening that nothing seems to be able to fix it. I'm sorry this happened to you guys.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

sonnyjim

Hi guys just an update,

I'm still in the same position. Does anyone else have an ideas of something I can try? I feel quite helpless now to be honest, nothing works.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract


Hawk

Sonny,  If your signature line is incomplete, the surgeon's name for the implant, no date of the implant.  You never posted an implant journal.  We know NOTHING about your surgery, recovery or whether you had an implant yesterday.  FULLY fill out your signature line.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Sonic

Have you tried Cialis or Viagra? Maybe try higher doses and see if it helps a little with glans engorgement?

Maybe incorporate a VED to your routine? Sadly not much can be done about this except for trying Cialis/Viagra/VED
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

sonnyjim

Yeah I've been taking Cialis (up to 20mg) it just has no effect. Viagra is the same.

It's as if the scar tissue blocks the nerves or something, so these medications just don't do anything for me.

It's difficult because I can't see how I'm going to get past this. I went ahead with the implant because I really thought I would be able to live the rest of my life normally. And I just can't see a future.

I honestly don't know what to do next.

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

QualityLife

This might not cheer you up enough just yet but there's always a solution. Always. What you're experiencing is most likely a nerve damage, that is why there's an issue with both erogenous sensation on your penis (sensory nerves) and soft glans (motor nerves). There's a solution coming sensation-wise and that's WinSanTor's WST-057 topical gel, working to regenerate sensory nerves. There's couple of more stuff that's right now in crinical trials and should be up the market by 2025. The hard part is whether FDA approves it, but even if not, there's still a way in getting ur hands on it.

Basically what we waiting for is a medicine for nerve regeneration and, as mentioned earlier, there's a couple of them being even so far as Phase 3. Please don't lose your hope. Your 6-years old struggling story inspires others, including me (who's new into basically the same condition as you) not to give up.
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Curvekiller94

Sonny I feel for you... I don't have as bad of sensation loss. But I used to have very good sensation prepeyronies. Now it's like a cold numb sensation that in some places I can barely feel or can only slightly feel. Prior to peyronies my glans was the most sensative place after it it's like the tip top of my glans and bellow the head a bit but there's a gap of numbness. Idk what caused this I think I have plaque near my glans I can feel a hard inflamation feeling on my left side near the tip.   I've learned to like it cuz it's the best I got, I've been to specialists both accredited and not. I've been to therapists both accredited and not. Unfortunately, nothing really addressed this for me so I've been trying my best to learn to live with it it's challenging and exhausting and I applaud you for hanging in there. Don't give up

I have a feeling in our lifetime we will see some regenerative medicine better than we have seen thus far. I could seeregenerative medicine in general as we have all these tools that can analyze more data than people have ever been able to in the past. My fingers are crossed for you. I'm no doctor but I'm praying for you my dude I struggle with my problems and pain is the reason I still haven't gotten an implant. Im just so worried it will cause me more pain or more sensation loss. I am still leaning g towards it cuz all I can think of during sex is am I hurting myself. You see it's very hard to tell when you have less feeling and well... yeah I'm sure you understand. Wishin you the best
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

sonnyjim

The problem is that I just don't know how to go about things anymore.

I can't do this life on my own. But that is starting to look like a reality. And if that is what it is then what is the point in all this ??
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract


happyman

Quote from: QualityLife on December 28, 2023, 01:00:02 PMThis might not cheer you up enough just yet but there's always a solution. Always. What you're experiencing is most likely a nerve damage, that is why there's an issue with both erogenous sensation on your penis (sensory nerves) and soft glans (motor nerves). There's a solution coming sensation-wise and that's WinSanTor's WST-057 topical gel, working to regenerate sensory nerves. There's couple of more stuff that's right now in crinical trials and should be up the market by 2025. The hard part is whether FDA approves it, but even if not, there's still a way in getting ur hands on it.

Basically what we waiting for is a medicine for nerve regeneration and, as mentioned earlier, there's a couple of them being even so far as Phase 3. Please don't lose your hope. Your 6-years old struggling story inspires others, including me (who's new into basically the same condition as you) not to give up.

cant believe this is the only post that mentions the winsantor topical. the patent is actually out and one can replicate at home if they wanted. im certainly looking into it as i feel i have peripheral neuropathy following an injury
20s
been 5 years
hourglass, ed, soft glans
diagnosed corporal fibrosis

sonnyjim

Hi everyone just a quick update, no real improvement. I take 10mg tadalafil daily just to keep the blood flowing down there but still no improvement. I doubt this could improve now.

Has anyone had success taking tadalafil alongside other things or would that be dangerous?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700