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Author Topic: Wondering if my life is worth living…  (Read 2301 times)

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sonnyjim

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Re: Wondering if my life is worth living…
« Reply #50 on: June 11, 2022, 11:09:47 AM »

No amount of therapy is going to make my accept things as they are. I still remember how things were 6 years ago. To go from that, to this is unbelievable and I can’t even understand it myself. I used to get an erection just thinking about my girlfriend (ex now) now I have no function even with an implant. I don’t understand how I’ve had such a bad injury but it never showed up on MRI or ultrasound.

Maybe they were looking in the wrong place? I don’t know.

My life is just miserable.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gobbler

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Re: Wondering if my life is worth living…
« Reply #51 on: June 11, 2022, 12:59:57 PM »

I totally understand how you feel and a good therapist will not force you to delude yourself that this is not an issue and everything is happy and a fairytale, thats not how therapy works. he will also encourage you, as we do, to really exhaust every option you have. and I think having a consultation with the world leading sexual health specialists is a good start. I cant imagine there is literally nothing you can do besides therapy to improve the situation. these things that are occupying your mind right now about the MRI etc are things you then need to ask this doctor as well.
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diagnosed with peyronies disease in Feb. 2020
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tried VED without much success, Cialis and potaba
single

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #52 on: June 11, 2022, 01:43:42 PM »

Thanks for your replies…

The problem is that I feel like I have exhausted every option. The only other option I have is if somebody like Dr Eid can perform a miracle. Maybe it isn’t a miracle but it’s not going to be something that can be done without surgery and most surgeons I have spoken to have just told me there’s nothing that can be done and I have to just deal with it.

Personally I can’t see why they can’t just open me up and cut the scar tissue or release it somehow, that doesn’t seem like it would be that complicated, I don’t know 🤷‍♂️

The scar tissue is hindering blood flow so why would you not just do something about the scar tissue? I have been reading stories that says surgeons don’t do this as there is a risk that it can affect sensation but I literally have no sensation anyway so what’s the risk?

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

gobbler

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Re: Wondering if my life is worth living…
« Reply #53 on: June 11, 2022, 03:03:57 PM »

I think the reason this is often a problem is because the defect that cutting into the plaque would cause needs to be covered with a graft, however these graft do not behave like the tunica albuginea of the body, their properties are different and they are not provided as well with vascularization and cannot compress against the venes properly causing Erectile Dysfunction which is why excision/incision and grafting is such a risky procedure. I am not sure how this behave in the corpus spongiosum however. also I might think that if there is no palpable and detectable plaque visible on ultrasound the surgeon will have hard time cutting through something he cannot see. however something so minor that you cannot palpate or detect should not cause the issues you are facing which is why the doctors need to do a better job to understand what is going on. I think you need to keep on searching for a professional until someone cares enough about this to investigate and Eid and Trost are good starting points

I have read an interesting study about venous ligation for glans enhancement after penile implant surgery and the satisfaction seems to be high however I would urge caution with these kinds of studies as venous ligation is a controversial procedure in itself as it often times fixes a consequence and not the root cause.

(https://www.hindawi.com/journals/bmri/2014/923171/) its a small study but something that might be worth investigating. I am sure there is other approaches like this as well.

I really hope you can find a doctor who can answer all the questions you still have. I have some issues with my dick myself and I dont know if it will ever return to a state where I can be satisfied with it and it has all been very different just a year ago so I feel that and I think many here do as well.
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #54 on: June 11, 2022, 03:20:15 PM »

It is palpable it just didn’t come up on the ultrasound or mri. It can be felt. It is on the bottom side of my penis and it is quite deep inside, like a thin line. Ever since I’ve had this I feel like my penis is not even attached to my body.

It doesn’t make sense to me how it never came up on ultrasound or mri if I can feel it quite easily with my fingers. I guess maybe they just look for scar tissue that’s inside the corpus cavernosa or whatever.

I used to think that if I could somehow shrink the scar tissue or break it up my function would return a bit but it hasn’t happened at all.

When I had my penile implant done I just thought they would remove any scar tissue during the surgery but that isn’t how it works.

Does scar tissue like this actually ever shrink after this many years ? Or is the best it’s ever going to get ?
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gobbler

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Re: Wondering if my life is worth living…
« Reply #55 on: June 11, 2022, 03:41:12 PM »

I personally could not imagine a reputable doctor would go ahead with a surgery before doing all the proper work up. I do not know the answer to the other questions but I think these would be excellent things to ask someone like Dr Trost
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #56 on: June 12, 2022, 06:15:07 AM »

The scar tissue is now rock solid so I assume none of the usual things are going to work, it is like bone. The scar literally is so thin and it goes across the bottom of my penis from one end to the other, like horizontally. It stops my penis from expanding. I don’t know why there is not a way for somebody to help me out.

I guess if it can’t be seen on ultrasound or mri then they just assume it isn’t there. The trouble is it is disturbing me because although I have no sensation in my penis I can feel where the scar is no matter what I’m doing. It’s like a pinching feeling.

I don’t know what else can be done but I feel like I am running out of time, ready to give up with it all. I never imagined my life would go like this, sitting reading forums for 6 years and waiting for responses.

If the scar is hard does that mean it is calcified? The last thing I have been trying is red light therapy but even that does seem to be doing much. I keep thinking if there is a way to somehow break the scar then it would improve things but I guess that just isn’t realistic.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gobbler

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Re: Wondering if my life is worth living…
« Reply #57 on: June 12, 2022, 04:06:01 PM »

if it was calcified it would almost certainly be seen on ultrasound. I do not think you are running out of time. important now is that you get opinions from other doctors on it so you can evaluate better.
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diagnosed with peyronies disease in Feb. 2020
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tried VED without much success, Cialis and potaba
single

Hawk

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Re: Wondering if my life is worth living…
« Reply #58 on: June 13, 2022, 08:19:19 AM »

I have been gone for 2 weeks and have only read about 75% of this topic.  Because of that, I will only address one point.  The inability to orgasm or to have sensation has NOTHING to do with the spongiosium getting erect.  Ejaculation/orgasm is totally disconnected from erection.

A man fresh out of prostate surgery might get zero erection but have powerful orgasms.  Forget the focus on the erection of the spogiosium.  You either have nerve issues or a psychological block.  No one needs spogiosium erection or any erection to have feeling and orgasm.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #59 on: June 13, 2022, 02:36:13 PM »

So will it ever get better then? If it is a nerve issue?

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

gobbler

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Re: Wondering if my life is worth living…
« Reply #60 on: June 13, 2022, 02:52:01 PM »

I have seen that you said the sensation problems have not started with the implant but with the disease itself. if it was with the implant I would have guessed some neuronal damage with the surgery. however with the plaque, I can not imagine that a plaque that is not detectable on ultrasound could impact sensation in such a severe manner. you will talk to a specialist about this I am sure but personally I also have had sensation issues in my penis for the longest time and still do because I am depressed about what it looks and feels like and how terrible my erections have become. I do not believe this has actually caused abnormalities with the neural function but my brain processes it much different. there must be some diagnostic tool to figure out if there is any actual impairment or if it is a psychological block that is involved
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diagnosed with peyronies disease in Feb. 2020
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tried VED without much success, Cialis and potaba
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sonnyjim

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Re: Wondering if my life is worth living…
« Reply #61 on: June 14, 2022, 04:32:39 AM »

I have been gone for 2 weeks and have only read about 75% of this topic.  Because of that, I will only address one point.  The inability to orgasm or to have sensation has NOTHING to do with the spongiosium getting erect.  Ejaculation/orgasm is totally disconnected from erection.

A man fresh out of prostate surgery might get zero erection but have powerful orgasms.  Forget the focus on the erection of the spogiosium.  You either have nerve issues or a psychological block.  No one needs spogiosium erection or any erection to have feeling and orgasm.

So it must be that the injury has damaged the nerves in my penis. I literally feel nothing and according to Dr Eid there is no procedure to change this or remove the scar tissue. I don’t know how to carry on with life knowing that it just isn’t going to improve and even if they found the scar tissue they wouldn’t do anything to help my situation because either: 1) it is not possible or 2) it is too complicated.

My life sucks.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Jack1909

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Re: Wondering if my life is worth living…
« Reply #62 on: June 14, 2022, 11:24:02 AM »

Have you tried pouring cold and hot water on it? If you don't feel neither of them, then it's numbness due to nerve injury. On the other hand, if you feel it, the only reason you don't have sensation-pleasure is coming from your mind. My story in brief may come in handy:

- 2012, after surgery, no sensation, therefore no pleasure.
- 2014, surgery, for some reason, sensation started coming back and I started feeling cold and hot water again. I also developed neuropathy, which the pattern popped up pretty common way: you have your sensation back, then comes the pain.
- until 2019, I didn't have any plaesure coming from my penis, it was like rubbing an handrail. I used to blame my nerves for it.
- from 2019 to now, pleasure has come back, it came back for no reason, just mentally recovering I guess, little by little. Now I know, as I expereinced, I can have huge pleasure from my penis.

It took a good 5 years to start feeling pleasure again, even though my sensation was back! already At the end of the day the point is if you can feel hot and cold water..if you can, then you can have your pleasure back.
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31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe Erectile Dysfunction after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #63 on: June 14, 2022, 04:50:07 PM »

I don’t think it is in my mind as it’s been 6 years since I had the injury which caused all these problems. I can feel hot water but only if it is very hot I can’t feel warm water. I haven’t tried cold water so I don’t know.

All I know is that I don’t feel anything during sex. It is making me depressed to the point where I’m thinking of suicide every day. I’m 33 years old, I can’t imagine living the rest of my life like this.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gobbler

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Re: Wondering if my life is worth living…
« Reply #64 on: June 14, 2022, 04:52:19 PM »

there is tests you can do for the nerve issues. I just cant understand how a plaque that is not visible on ultrasound would cause a neural injury of such severity. what was the nature of the injury?
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diagnosed with peyronies disease in Feb. 2020
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single

Jack1909

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Re: Wondering if my life is worth living…
« Reply #65 on: June 14, 2022, 05:40:00 PM »

I don't want to sound annoying but if you can feel hot and cold (feeling hot implies the capacity to feel cold), then you can have pleasure. I'm super sure about it. First thing is starting to hate your penis a little less and getting rid of any suicidal purpose. If I was told something like that 5 years ago, I would get super annoyed so I understand you might find these words ridicolous.

Anyway I'm 32 and I have never had intercourse, it's plenty of poeple struggling here.
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31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe Erectile Dysfunction after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #66 on: June 14, 2022, 05:42:00 PM »

I don’t even know how it happened I just woke up in the morning with a stinging pain it lasted for more than 6 months. After 6 months there was no more pain but eventually it got harder and harder (the scar) and my erections gradually got weaker and weaker until this point.

I can’t understand how it wouldn’t show on ultrasound or mri either but it isn’t inside the cavernosa which the cylinders (penile implant) replaced. It feels to me like it must be very close to the urethra and I can feel it all the time (even now after 6 years) it feels like someone is squeezing my penis.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #67 on: June 14, 2022, 06:00:19 PM »

I don't want to sound annoying but if you can feel hot and cold (feeling hot implies the capacity to feel cold), then you can have pleasure. I'm super sure about it. First thing is starting to hate your penis a little less and getting rid of any suicidal purpose. If I was told something like that 5 years ago, I would get super annoyed so I understand you might find these words ridicolous.

Anyway I'm 32 and I have never had intercourse, it's plenty of poeple struggling here.

I can’t feel anything during intercourse, it isn’t pleasurable at all. I also can’t ejaculate without vigorously masturbating (sorry for graphic detail) it is what it is. I can’t hate my penis any less because it’s broken. Even though I’ve had implant surgery I don’t feel like I can have a relationship like this. The head of my penis is white and small, smaller than I remember it ever was before.

I don’t know if I can shrink the scar tissue somehow after this many years but I doubt it. I feel like I’ve run out of things to try and now I’m just expected to live with it.

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

Pfract

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Re: Wondering if my life is worth living…
« Reply #68 on: June 14, 2022, 09:36:29 PM »

Sonnyjim..... check this out:

www.betterhelp.com 
https://www.erosaphroditetherapy.co.uk/prices
https://www.e-therapy.uk/
https://stellawithlove.com/body-coaching-pricing-and-packages/

You are obsessed with the same thing.... You repeat the same points AD-nauseam.... over and over and over and over again. Nobody can get through to you , unfortunately. But it is clear to see that you are in great distress.

So much so that you don't even realize that by having the penile implant you pretty much solved all your Erectile Dysfunction issues. Whether your glans engorges or you feel pleasure or not, you can have sex. You should understand this at the very least. Many men can't. If you realized this you would then be able to try and find out how to deal with your sensitivity issues. You could research your condition. If you don't know where to start you can ask other members for tips on places to get yourself informed and where to get more info.

But this atittude of yours does not help you in any way. Seriously.... read your posts above and tell me if they do not feel all the same? And i ask you... what are you going to gain from repeating the same thing over and over? Do you somehow magically fix your condition if you keep posting the same thing as well as having that defeatist attitude?

And don't do like you sometimes do when people press you to talk that you ran away for weeks and then come back. Try to engage in the conversation i am trying to have with you. Please.
 

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #69 on: June 15, 2022, 05:31:14 AM »

With all due respect Pfract, you’ve said the same things to me before. If you look back on my posts you basically said I was making a big deal of things and now look at me. I went and got an implant done and I am still in the same boat.

Even though I agree with what you’re saying to a point, therapy won’t make me accept this. I needed results. I’ve seen so many psychiatrists and counsellors and they all tell me the same thing.

I’m not trying to repeat myself I just can’t see how things can go so bad in such a short space of time. 6 years ago I had normal function, now I don’t even have an actual penis between my legs. I can’t help but think that more could of been done to help me when I first had the injury instead of waiting months and months for an appointment to be sent to see a therapist.

There’s no way to make this nightmare go away.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

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Re: Wondering if my life is worth living…
« Reply #70 on: June 15, 2022, 05:49:39 AM »

Don't just assume this is associated with Peyronies Disease.  Go to a neurologist/neurosurgeon.  You could have a compressed nerve in your spine or elsewhere.

QUESTION:  Are you telling us that if you were blindfolded, you could not feel a pin prick in your glands?  What about heat or cold?

I, too, find it very difficult to believe that kind of loss of sensation has anything to do with minimal plaque.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #71 on: June 15, 2022, 06:29:22 AM »

I had a nerve test where they poked a needle into various places, I also had scans of my back and everything else. Although it really is ‘minimal plaque’ maybe it’s just in the place that would cause all of these problems, I don’t know. After I had the nerve test they finally ran out of things to do and put me forward for the implant.

I can feel hot water if I run the taps constantly onto the glans but it is very little sensation and when I put my penis back in my pants I feel nothing again. Glans is white and small.

The most disturbing thing is the only sensation I do feel is from the scar itself, 24 hours a day it never goes away. Dr Eid said in my thread that there is nothing else that can be done apart from resizing the cyclinders but surely they can cut or remove scar tissue in situations like this?

I literally can’t forget about it for a few minutes because that feeling is always there.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gobbler

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Re: Wondering if my life is worth living…
« Reply #72 on: June 15, 2022, 07:33:27 AM »

it still does not need to be a nerve problem. when I was on a drug that messed with my androgens I had zero sensation on my penis and not just in a sexual way, it was overall kind of numb to the touch like when you get a tooth taken out and they numb it down. now I have sensation back but I am completely impotent even with high doses of PDE5i so I get what you mean when you talk about things going to crap in such a short amount of time. I also have persistent pain in my left erectile body and it is very hard for me to stop ruminating about whether this is atrophy happening right now or what is even going on.

therapy can help with that part. I think you should give therapy a chance, I too believe however that actual results would have a much greater impact but therapy is not there to delude yourself about how much things suck or to delegitimize them. thats not how it works. and it is not mutually exclusive with searching for improvement for the organic problem either.
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diagnosed with peyronies disease in Feb. 2020
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tried VED without much success, Cialis and potaba
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Pfract

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Re: Wondering if my life is worth living…
« Reply #73 on: June 15, 2022, 11:34:22 PM »

Quote
With all due respect Pfract, you’ve said the same things to me before. If you look back on my posts you basically said I was making a big deal of things and now look at me. I went and got an implant done and I am still in the same boat.

Even though I agree with what you’re saying to a point, therapy won’t make me accept this. I needed results. I’ve seen so many psychiatrists and counsellors and they all tell me the same thing.

I’m not trying to repeat myself I just can’t see how things can go so bad in such a short space of time. 6 years ago I had normal function, now I don’t even have an actual penis between my legs. I can’t help but think that more could of been done to help me when I first had the injury instead of waiting months and months for an appointment to be sent to see a therapist.

There’s no way to make this nightmare go away.

@sonnyjim
thank you for getting back to my post. You are not in the same boat. We have established that. But you keep on forgetting that. You also had erectile dysfunction issues on top of your other problems and those are solved? 

Therapy can be helpful but you have to want to reach out and get help too. It doesn't look like you are receptive at all to it. Like i said and i will tell you as many times as necessary... you just repeat the same things over and over. You never ask concrete questions neither you are open to dialogue about your issues. Do you actually want to do anything else other than complain?

I don't know if you realized but you see a therapist right away, provided you want to pay out of pocket? Did you even look at the websites i sent you?

There is. I spoke to you about the Viberect. That medical device is used to stimulate erections in patients that have spinal cord injuries (which is not your case?) and they have it way worse than you. Apparently you DO have some sensation? Which goes against what you have been saying all along? So what do we stick to? Sensation or no sensation?

there is a penile sensory test. Have you done it? there is also medication that you can take that helps engorge your glans. (muse) Have you taken it? Have you tried viberect? Have you ordered it? When will you do so? When will you start seeing a SEXUAL THERAPIST?  Not just any therapist but one that focus on sexual issues? When? When will you ask about Pubmed and other science websites where you can research (potentially) about your condition or similar symptoms and places to go or doctors to contact? When?


And remember... your next post should address my questions only and leave out stuff like "nothing works" "same boat" "no penis down there" "my life is done" "can't do anything". And to finish this off, no, i am not against you. Quite the opposite, so don't take offense.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #74 on: June 16, 2022, 05:02:38 AM »

I barely have any sensation at all, I can actually scratch the glans with my finger nails and I still feel nothing. I have an appointment to see a therapist on the 28th but honestly I don’t see how it’s really going to help, I did all that years ago.

I have tried Vitaros gel it’s like £60+ for 4 tubes but it barely does anything enough for me to want to spend that amount of money on it. And also, what kind of crap do you think I am going through at this age with a penile implant and also having to use creams and gels to get my glans engorged? I used 4 tubes of it and maybe one time out of those I actually saw a slight difference, not much but something.

It honestly seems like I might be the worst affected person on these forums because I can’t find anyone else in the same position as me. Everyone has curves or Erectile Dysfunction but no one with all these problems. I just really cannot believe how things have gone.

That is all.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tobyg

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Re: Wondering if my life is worth living…
« Reply #75 on: June 17, 2022, 05:51:09 AM »

you are not the only one, there are several with sensitivity problems, I am 1, also my biggest problem is the corpus spongiosum and the glans, although everything got worse after a circumcision.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #76 on: June 17, 2022, 10:45:08 AM »

Do you have any sensitivity at all?

How do you restore it or is it not possible?

You have moderate Erectile Dysfunction, do you respond to pills at all? Because I don’t, with an implant, no blood flow to the glans. Spongiosum and glans both do not engorge and sex is basically a pointless thing for me now.

There must be a way to improve things.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

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Re: Wondering if my life is worth living…
« Reply #77 on: June 17, 2022, 04:49:17 PM »

Guys,

This is has gotten far removed from penile implants.  I cannot see that it has anything to do with implants at all.  It existed before the implant and continues after.  The only thing improved is that the implant enables you to have full intercourse.  An implant will not and cannot improve glan engorgement or numbness.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #78 on: June 18, 2022, 07:59:58 PM »

Hawk,

I have a question for you since you are quite knowledgeable when it comes to penile implants and things like that.

Would red light therapy (like a heat lamp) damage the cylinders ?

I have seen a lot of good things about red light therapy reducing scarring and I have thought about maybe using it myself. I’ve seen a few members of this forum talking about using it but they didn’t have implants.

This is my last resort as I have tried everything else.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

GaussRifle

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Re: Wondering if my life is worth living…
« Reply #79 on: June 18, 2022, 08:17:38 PM »

Sonnyjim, no you haven't tried everything. If you looked at what scientist found with the new treatment for patients with radical protectamy who lose erectile function due to damage to nerve cavernosal nerve injury and sensation loss,, you'll see that most of the patient regained sensation and regrew a new branch of nerves into the penis using mesenchymal stem cell, and some other with very targeted therapies. These are not mainstream yet, but they do exist. Units of Melbourne, even describes a new form of surgery where they were able to microsocpicly move some nerves from the foot and then it grew into the penis for their patients.

https://www.google.com/amp/s/pursuit.unimelb.edu.au/articles/growing-nerves-to-restore-erectile-function.amp
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #80 on: June 19, 2022, 07:53:36 AM »

That might be useful to me if I didn’t have a penile implant though. My issue is the nerves are damaged, it wasn’t always like that in the early days when I first noticed a stinging pain but gradually it got worse and worse until the glans shrunk and went white.

If I knew what I know now I would of booked a private consultation with a top urologist instead of waiting for the NHS appointments which took months and months.

My injury is to the corpus spongiosum, which isn’t replaced by the implant. So I still have all the same issues as before. The only way I can get through this is if I can somehow improve the extent of the damage of the 6 year old injury.

I have bought an infrared lamp because I have seen some people saying it can reduce scarring but I’m not sure whether I could use it if I have an implant.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

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Re: Wondering if my life is worth living…
« Reply #81 on: June 21, 2022, 12:45:48 AM »

Quote
Hawk,

I have a question for you since you are quite knowledgeable when it comes to penile implants and things like that.

Would red light therapy (like a heat lamp) damage the cylinders ?

I have seen a lot of good things about red light therapy reducing scarring and I have thought about maybe using it myself. I’ve seen a few members of this forum talking about using it but they didn’t have implants.

This is my last resort as I have tried everything else.

No. You have not tried anything else. There is an array of things that you have not done. Red light therapy does nothing for that. If it did, doctors would be using it for ages now. Doesn't that make sense to you?

Gaussrifle, either i am mistaken or the procedure doesn't quite go as you described. Nonetheless it was an interesting read. I doubt it applies to SonnyJim.

Not even forgetting that there is so much stuff for him to still try and he hasn't done so, yet he finds comfort in your link.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #82 on: June 21, 2022, 02:07:30 AM »

What else have I not tried then?

I’ve taken the “final step” and that still hasn’t fixed my problems.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

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Re: Wondering if my life is worth living…
« Reply #83 on: June 21, 2022, 09:24:14 AM »

Please read my last 5 posts here

gobbler

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Re: Wondering if my life is worth living…
« Reply #84 on: June 21, 2022, 12:09:40 PM »

so in a post I recently read Dr Trost said that it is almost impossible that a plaque even if it is quite dense can affect the sensation on the entire penis. surgery can do that but this is something that can indeed be measured. what can not be measured with an objective test however is arousal which also plays a large role in how you process the sensation that might actually be there on a neural level. I think this could be reassuring as at least in contrast to actual nerve damage this is something that can be worked on, not that this is it or this is going to be easy at all, just that the finality of an actual nerve damage does not seem to be the issue
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #85 on: June 21, 2022, 06:17:54 PM »

It’s not really a ‘plaque’ though it’s more like a tear of the spongiosum which has healed into a solid scar, like a line that goes across my penis. It hasn’t got better at all in 6 years and I doubt it ever will now.


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

GaussRifle

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Re: Wondering if my life is worth living…
« Reply #86 on: June 21, 2022, 10:12:24 PM »

While you figure this out, have you considered glans fillers made up of HA ? I believe Dr eid used to do them at one point. Does he not do that anymore ?
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #87 on: June 22, 2022, 04:01:22 AM »

Not sure mate but I live in the UK and a trip over there at the moment just to have that done would probably not be realistic for me at the moment.

Plus even if I did have that done, I would not feel any sensation still and that is what is getting me down. I can’t hide my sadness in my face I literally can’t be happy for even one second of the day.

Will anything work on reducing the scarring or is this the best I am ever going to get ?
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

shrunken_dick

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Re: Wondering if my life is worth living…
« Reply #88 on: June 22, 2022, 05:35:09 AM »

Sensation may return on its own over the time. But nothing can help you with glans engorgment .
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29 year old. I was taking 400 Mg spironolactone to treat hair loss. Xanax withdrawal in combination with spironolactone shrunk my penis from 6” to 4”.
I am seeking information about the sliding technique.

Pfract

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Re: Wondering if my life is worth living…
« Reply #89 on: June 22, 2022, 11:20:48 PM »

Another day that goes by, another day that you ignore my posts. Why sonny?

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #90 on: June 23, 2022, 03:54:35 PM »

@sonnyjim
thank you for getting back to my post. You are not in the same boat. We have established that. But you keep on forgetting that. You also had erectile dysfunction issues on top of your other problems and those are solved? 

Therapy can be helpful but you have to want to reach out and get help too. It doesn't look like you are receptive at all to it. Like i said and i will tell you as many times as necessary... you just repeat the same things over and over. You never ask concrete questions neither you are open to dialogue about your issues. Do you actually want to do anything else other than complain?

I don't know if you realized but you see a therapist right away, provided you want to pay out of pocket? Did you even look at the websites i sent you?

There is. I spoke to you about the Viberect. That medical device is used to stimulate erections in patients that have spinal cord injuries (which is not your case?) and they have it way worse than you. Apparently you DO have some sensation? Which goes against what you have been saying all along? So what do we stick to? Sensation or no sensation?

there is a penile sensory test. Have you done it? there is also medication that you can take that helps engorge your glans. (muse) Have you taken it? Have you tried viberect? Have you ordered it? When will you do so? When will you start seeing a SEXUAL THERAPIST?  Not just any therapist but one that focus on sexual issues? When? When will you ask about Pubmed and other science websites where you can research (potentially) about your condition or similar symptoms and places to go or doctors to contact? When?


And remember... your next post should address my questions only and leave out stuff like "nothing works" "same boat" "no penis down there" "my life is done" "can't do anything". And to finish this off, no, i am not against you. Quite the opposite, so don't take offense.

I have an appointment for therapy on the 28th, I’m trying to keep an open mind about it but essentially all I will be doing is paying somebody to convince me that these problems are not as bad as they actually are.

I done the nerve test at ULCH where they put a needle in certain places and figure out if you can feel it or not and I didn’t feel anything at all.

The viberect seems a bit too good to be true seeing as though I can’t feel needles or hot or cold water that well. It seems a bit expensive to even try it with the risk of it not working and being another useless waste of money like everything else I’ve bought over the years.

I have tried Vitaros cream for glans engorgement but it really doesn’t do too much and it’s expensive. £60 for 4 tubes. I’m starting to feel like nothing will ever work and that it will never improve. You can’t say I haven’t tried Pfract we have been arguing with each other for 6 years now.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

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Re: Long Time. My update
« Reply #91 on: June 25, 2022, 06:18:42 AM »

I would probably be happy if I had glans and cs engorgement like you have but because I don’t I feel like my implant is very noticeable and this is psychologically hard for me to get my head around. I also do not have any sensation in my penis.

Knowing what I know now I would of tried other things such as shockwave therapy first before getting the implant just for the fact that I might of actually had a better outcome.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

jj21

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Re: Re: Long Time. My update
« Reply #92 on: June 25, 2022, 09:25:37 AM »

Sonny,

I'm sorry that has happened to you. Did you have those issues prior to the implant or were they caused from the implant?
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33 yrs old
Peyronies for 4 years now
Got better but then got worse
Mild erect curvature but major Loss of girth, dents and significant semi-erect curve
Moderate Erectile Dysfunction
Re-started VED, also using Restorex

Hawk

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Re: Re: Long Time. My update
« Reply #93 on: June 25, 2022, 02:20:12 PM »

SonnyJames complained of those issues prior to an implant.  I don't think any doctor ever suggested that an implant will restore nerve sensation or restore engorgement of the spongiosum.  That is not what implants are designed to do.  On the other hand, the shockwave would not do that either. 

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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #94 on: June 26, 2022, 04:17:57 PM »

So I’m stuck with a lifeless penis forever?
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

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Re: Wondering if my life is worth living…
« Reply #95 on: June 26, 2022, 04:50:39 PM »

If you continue with that attitude, yes. If you reach out for help in ways you haven't before then no.

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #96 on: June 26, 2022, 05:43:32 PM »

What kind of help can I reach out for? Therapy?

I don’t know how talking about it is actually going to solve the issue.

I’m 33 years old and I can’t have satisfactory sex. And I’m sitting here every day realising that my life is going to be a life on my own. What kind of life is that, really?

Before this, I felt ‘connected’ when I was with a woman. Now I don’t have any of that. Every single thing is a struggle.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Curvekiller94

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Re: Wondering if my life is worth living…
« Reply #97 on: June 26, 2022, 10:11:59 PM »

Have you ever seen a neurologist or a spine doc about it? I have continued pain and neuropathy it’s funny you described the way I described to my penis how sometimes it can” feel like my penis isn’t connected to my body.” I had more sensation problems early on some of which  that have returned some not - but I do agree maybe with sensation pain is present too. I’m looking into nerve problems as dr. Trost believes that peyronies does not cause referred pain. Also 90% of peyornies pain resolves in a few years which leads me to believe the nerve damage or numbness may be coking from up stream.

The Analog AI neural networks can’t happen soon enough I’m hooong in my life time we gain understanding of how to trouble shoot nerve pain (or at least understand where it comes from and how to determine if it’s causing the pain from nerve or if it’s form an injury.

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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

jj21

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Re: Wondering if my life is worth living…
« Reply #98 on: June 27, 2022, 04:23:11 AM »

Sorry Sonny, that would be extremely difficult to try to accept, especially at your age.

I agree with CurveKiller, perhaps this is a nerve issue and investigating that further could result in a solution.

Lastly, just remember, and I know this will be very hard to accept right now; but life is not over. Keep looking for solutions, there may be an underlying nerve issue... There are also other forms of intimacy that some women prefer over penetration itself, so being with a woman isn't completely ruled out.

J
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33 yrs old
Peyronies for 4 years now
Got better but then got worse
Mild erect curvature but major Loss of girth, dents and significant semi-erect curve
Moderate Erectile Dysfunction
Re-started VED, also using Restorex

sonnyjim

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Re: Wondering if my life is worth living…
« Reply #99 on: June 27, 2022, 06:49:37 AM »

I don’t think there is a solution because the only way to improve this situation is if a surgeon would do something to the scar tissue. Either remove it, break it up or do something and none of them are willing to do that.

It is very difficult for me to accept because I’ve been through all this for 6 years. I’ve had no life for 6 years and nobody around me really understands how bad it is.

It’s bad enough that I now have a penile implant without all the other issues on top of that. I probably would be able to accept that I have an implant if everything else was fine. I feel like any sexual encounter is going to be disappointing for me and whoever I’m having sex with because I can’t feel anything and I cannot ejaculate.
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33yo, single
severe Erectile Dysfunction caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700
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