Help me improve my situation

[sonnyjim]

No offence taken but I only did those exercises for such a short period of time that I didn’t expect to have all of these problems. There’s people on those forums who have been doing that stuff for months and years and didn’t end up with the problems that I have.

Everyone makes mistakes, I just never got a second chance with this one.

[Fourtytwo00]

I literally thought that having an implant would be a fix, but it really wasn’t what I expected. Sure, it gets hard. But what is the point in having a hard dick with a soft glans and no pleasurable feeling or the ability to ejaculate ?

6 years I’ve been reading forums and going to appointments to try and figure out what is wrong with me but there just isn’t any answers, or it is unfixable.

When you have Pelvic floor issues / chronic prostatitis ED tend to be the consequences rather than the cause. But it's preatty natural being focused mostly on penis. Young age may not help with doctors which tend to dismiss many symptoms. I'm 43, the size of my prostate is low, PSA is ok, I pissing is ok, no one told me to check with a prostate / rectal ultrasound for a year. But when I did it tissues inflammation inside my body was evident. A cortisone treatment helped me a little bit. Some symptoms subdued. Some feelings and a little bit of engorgement went back. Before my penis was almost completely numb with painful feelings in the tip of the glans and between my scrotus and ass. Now it's better, not ok but a little bit better.

In short: you were brave enough to fix your erection problem (I wasn't), likely you have some margin of improvements elsewhere. I mean pelvic floor, perineal area, hormones and your mind. Yes years of ED suck. Brain has to be rewired.

[sonnyjim]

I wasn’t brave, I had no choice. If I was brave enough I wouldn’t of lived long enough to go through all the shit I’ve been through but that’s another story.

I will try both of your suggestions even though I think this is more to do with tissue damage or damage to the corpus spongiosum. Even now, I feel some tingling sometimes where the lumps are but after 6 years of the same problem, I’m beginning to think it will never get better.

I could of lived happily with a penile implant - if everything else was the same (sensation, glans, ability to ejaculate) but it does feel like a bitter pill to swallow now.

Even before I had the implant and I went to see urologists and they gave me trimix injections, the rest of my penis would be erect but just not the glans. Maybe tissue damage never really heals, who knows.

I just want to try everything because at least I can say I’ve tried.

[Fourtytwo00]

Did you check your Testo?

Btw my guesstimate is that numbness and spongiosum issues are more "internal" than "external". Inflammation, muscolar spasm, trapped nerve and similar stuff. It's not a great new because there is no wonder treatment. It's also difficult to find a good urologist or pelvic specialist.
It could be also an autoimmune response after an event which acted as a stressor. It's the last hypothesis of my doctor and I need more tests. It happens.
You were brave. I didn't feel like having a surgery when my spongiosum was ko and even now I don't have the mood. Rationally I know it's my only option but I'm not still there with my mind.

Last but not least. You weren't bailed out by anyone. It's how safety nets works in developed countries. We pay for smokers when get lung cancer, we pay liver transplant to drinkers, we save drivers from car accidents no matter how fast they were driving and so on.

[AllHailTed]

No offence taken but I only did those exercises for such a short period of time that I didn’t expect to have all of these problems. There’s people on those forums who have been doing that stuff for months and years and didn’t end up with the problems that I have.

Everyone makes mistakes, I just never got a second chance with this one.

Don't beat yourself up, we're only human at the end of the day. I got ED from SSRI's, spent ages kicking myself for taking them and blaming the doctors who put me on them etc but at the end of the day we can't change the past.

I encourage you to try some pelvic floor relaxation exercises for a few weeks and see if that improves your numbness and soft glans. I'm on phone so can't really link anything but there should be plenty of examples you can find on Youtube

[AllHailTed]

Did you check your Testo?

Btw my guesstimate is that numbness and spongiosum issues are more "internal" than "external". Inflammation, muscolar spasm, trapped nerve and similar stuff. It's not a great new because there is no wonder treatment. It's also difficult to find a good urologist or pelvic specialist.
It could be also an autoimmune response after an event which acted as a stressor. It's the last hypothesis of my doctor and I need more tests. It happens.
You were brave. I didn't feel like having a surgery when my spongiosum was ko and even now I don't have the mood. Rationally I know it's my only option but I'm not still there with my mind.

Last but not least. You weren't bailed out by anyone. It's how safety nets works in developed countries. We pay for smokers when get lung cancer, we pay liver transplant to drinkers, we save drivers from car accidents no matter how fast they were driving and so on.

You have pelvic floor issues too right? The autoimmune response is an ibteresting theory i haven't heard before. What tests does your doctor want you to undergo?

[sonnyjim]

Did you check your Testo?

Btw my guesstimate is that numbness and spongiosum issues are more "internal" than "external". Inflammation, muscolar spasm, trapped nerve and similar stuff. It's not a great new because there is no wonder treatment. It's also difficult to find a good urologist or pelvic specialist.
It could be also an autoimmune response after an event which acted as a stressor. It's the last hypothesis of my doctor and I need more tests. It happens.
You were brave. I didn't feel like having a surgery when my spongiosum was ko and even now I don't have the mood. Rationally I know it's my only option but I'm not still there with my mind.

Last but not least. You weren't bailed out by anyone. It's how safety nets works in developed countries. We pay for smokers when get lung cancer, we pay liver transplant to drinkers, we save drivers from car accidents no matter how fast they were driving and so on.

Yes, I had my testosterone checked and it was actually higher than I thought.

I don’t feel like I was bailed out at all as I’m not even sure what caused this, neither are the urologists. Sometimes I can’t believe how bad it got, how bad can the damage down there be that I literally feel nothing? And yet, ultrasounds and MRI’s still cannot detect anything wrong.

Sometimes if I have a feel around I can feel the damage seems pretty bad but still, it didn’t show on those tests. Makes you wonder what those tests are actually good for.

I don’t know whether this is a pelvic floor issue or just simply tissue damage. I’m not sure whether the sensations in our penis come from the corpus spongiosum or the other side (top) because all of my damage is on the other side (bottom) there is no change on the top.

I just don’t know how to live with this, that is the problem.

[Endoftheline]

The reason for my penile implant surgery was that I had some sort of trauma to the penis that caused me a lot of pain for a while and then my erections gradually got worse and worse to the point where I couldn’t stay erect with pills.

My symptoms other than that were: lack of blood flow to glans, glans staying soft, lack of sensation (cannot feel my dick in my pants and can’t feel much during sex), scar-like lumps can be felt on the underside of my penis. Despite that, nothing was found on all the tests I had (ultrasound, mri)

Seeing that the implant cylinders replace the corpus cavernosum, is it safe to say that since I still have all of the same symptoms the damage must of been done to the corpus spongiosum?

And if so, will this ever improve?

I don’t know what else to try.

Pelvic floor dysfunction could be the culprit, but you already had the implant so you can't save your erectile ability now, only your sensation and glans engorgement. Look up "a headache in the pelvis" and "the trigger point handbook" and follow the protocol for a few weeks and see how you feel.

I also have PFS and getting my implant next month, thankfully my sensation and glans are good, so if they remain untouched I think i could be happy with an implant.

[frwmw1]

The lump thing kinda sounds like peyronies, did they specifically look for that? Surely atleast they found a venous leak. Is the lump slowly going away?

[sonnyjim]

It’s more like a tear, so it’s like a chord running across my penis rather than the type of lump you get with Peyronies. It also never caused a bend just severe ED, lack of sensation and I can’t ejaculate. It is on the underside of my penis and I guess it’s a damaged corpus spongiosum or something. Strangely I had ultrasounds and MRI’s and they said everything looked normal and didn’t take me seriously or try to feel with their hands what is a very obvious scar.

It’s not going away but I feel tingling sometimes even after 6 years.