Exceptionally weird case of ED/Peyronie/something else?

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Joined: Mon Feb 10, 2020 11:24 pm

Exceptionally weird case of ED/Peyronie/something else?

Postby TachTaco » Wed Feb 19, 2020 9:06 am

Hey everyone,

(first, english isn't my native language, but I hope everything will be perfectly understandable)

As said in the title, my case is exceptionally weird and I haven't found ANY similar case online in terms of all the different phases I went through. I feel like an alien, it's like my penis is different from everyone else's. Things happened to my penis that aren't supposed to be possible and don't make any sense whatsoever...

One detail that may be relevant, and that I'll get into later: up until about the end of 2016 I had always masturbated myself in an extremely atypical way: by ferociously rubbing my penis against my left leg, and I always tried to ejaculate as quickly as possible (30 seconds-1 minute). I had always assumed it was the way everyone masturbated and it had never caused any problem whatsoever in my penis up until 2015, and I don't think it's at the root of the problem, but it may still be relevant to note.
As of today, I masturbate "normally", and can ejaculate at basically whatever time I choose (I mean, I always could, I just had always chosen to ejaculate as quickly as possible), sometimes 1 minute or even 30 seconds, sometimes 15-20 minutes or more.

So this post is probably gonna be pretty long, but my case sounds so crazy and impossible that I'm gonna go through all the details. I went through basically at least 5 distinct phases since anomalies started on my penis:

Phase 1 (1-2 weeks - May 2015)

It all started in a night of may 2015. I was 18 and up until then, even though I've always been pretty hypochondriac, the idea of erectile dysfunction or any other issue with my penis never had even crossed my mind. Ever. My penis had always worked fantastically and it had always been that way.

But on that night of may 2015, I was in a state of mild depression since about 2 weeks and I was especially anxious that night. So then, while in this anxious state, I did the most silly and stupid thing I've ever done, it's embarassing to say it even in an online forum but here it is: I had some toilet paper balls stuck in my butt hair and it was absolutely disgusting. Before that night, I had already took a scissor various times to cut the butt hair that had these disgusting things in it. So that's what I did again that night of may 2015, except there was a difference that time: I was in a very, very anxious state (without quite knowing why). So as I took the scissor I started thinking "What if I accidentally cut my balls and end up castrating myself?!", so as I approached the scissor to my butt hair my anxiety kept growing and feeding itself, and my penis begin to retract and greatly shrink (like when it's very cold outside) and feel completely numb. Because, I think, all the anxiety I had was concentrated in that area, so it probably cutt off blood flow to the penis. So my anxiety multiplied and I had a terrible panic attack, I felt like I was going completely insane! My dick had always been fine! How was that even possible? I thought I had permanently f*cked up my dick and castrated myself!

Sorry for the details and if some of this sounds completely disgusting and crazy, it was for me as well.

So after that panic attack I immeditaly tried to ejaculate by "masturbating" (rubbing my penis on my left leg), I didn't get any erection but still managed to ejaculate a tiny bit of sperm after a lot of effort. So I thought, "ok, something's wrong but I didn't castrate myself". So I tried to calm myself down (wasn't easy AT ALL) and tried to sleep, thinking that my penis would probably go back to normal tomorrow if everything is alright.
Then I woke up the day after... It was still the same! Completely retracted, minuscule, and completely numb, without any sensation. It stayed that way for maybe a week/a week and a half and then I started noticing slight erections, better sensation, and better ejaculation, and in about 3-4 days my penis was COMPLETELY back to normal, after a week/a week and a half of being completely numb, retracted and with total erectile dysfunction. So, whatever I did that night, it definitely didn't cause any permanent damage to my penis, even though to this day I still feel extremely guilty for it and think that if I hadn't done it, none of all of what's gonna follow would've happened...

Phase 2 (1 week - May 2015)

During that week my penis was completely back to normal again, and I thought that whatever I had just experienced the previous weeks was just completely psychological and would just be some bad memory.

Phase 3 (1 year - May 2015-May 2016)

...But, after about a week of having my normal penis again I woke up with a curved erection. At that exact moment I think the size, girth, sensation and all that were still normal (or at least very close to normal) but, very quickly (I don't remember if it was 1 or 2 days or just a few hours, but it was really quick), something REALLY, REALLY weird happened right after that: my penis started to massively retract again (if I remember correctly, the curvature was around the middle of the shaft and the top started shrinking quicker than the bottom), like 75% of the length and girth were gone in just a few hours/days! I also felt numbness and almost complete lack of sensation again, except this time there was a pretty severe curvature (probably close to 90 degrees, from what I remember) and some very, very hard thing inside my penis, almost like a rock.

So here I was with a numb micropenis that had a 90 degrees curve! With all of these symptoms appeared overnight and simultaneously ! How is that even possible?! I could have erections but only with A LOT of effort (zero morning woods during an entire year) and stimulation but they were just... Extremely small (remember, I had suddenly lost about 75% of both length and girth), extremely curved to the bottom left, would disappear in 1 or 2 seconds, and I could sense the very hard thing inside my penis even during the erection. I could only ejaculate after a lot of effort, and it would only be very small quantities of sperm, without any pleasure or sensation, and I couldn't ejaculate anything again for the next 3-4 days (while when my penis was fine I could masturbate 10 times in the same day and it would work the same).
During the flaccid state it was almost completely retracted (to 25% or maybe even less of the original size), I could feel that very hard thing (almost like a rock, as I said) around ALL my penis, although it was probably even harder around the middle of the saft, where the curvature was. I know many cases of Peyronie report erectile dysfunction and some loss of size but not as severe, this couldn't just have been "just" Peyronie.

This is probably the worst situation you could imagine, and I don't think I quite realized at the time how bad my situation was. Although, of course, I was very worried and I did go to an urologist or sexologist (I don't remember exactly) and I had no idea that Peyronie even was a thing so I just said I had erectile dysfunction, even though there was also the curvature and the extremely severe shrinkage (in both flaccid and erect states) as well as the loss of sensation and that hard thing inside. So the urologist/sexologist basically said, after seeing my blood and urine results and without even seeing my penis, that everything was completely fine in my penis and that it was all in my head. Ok, I thought, after all I had something similar a few weeks ago and it went away on its own so maybe I just need to relax. I basically tried to completely ignore the problem (never googled anything about it for that entire year) even though, in the background it was always there and I was constantly reminded of it each time I went to the toilet, or took a shower, or "masturbated" (if you could even call it that, in a numb micropenis with an almost 90 degrees curvature).

But, in may 2016, AN ENTIRE YEAR with my penis in that dramatic state, with ZERO changes: zero worsening (which, at that point, what would it even mean? It was already in the worst possible state), but also ZERO improvement. And it's not like there were some better days and some worse days, there was ZERO variation for an entire year.

So I had had enough: something was clearly f*cked up in my dick and it wasn't just all in my head so I had to find a solution! So I googled something like "curved penis" and found out about Peyronie and basically stoped when I saw all the sites saying that there was basically no cure (and, again, even then I didn't realize how severe my case was because I just assumed ALL my other symptoms: extreme shrinkage, almost complete numbness, etc were all due to the severe curvature and that everyone with Peyronie had them).

It was another extremely embarassing moment but I decided to tell everything to my parents, because I knew they loved me and would listen to me. It was an entire year of denial and severe anxiety that I had always tried to keep in the background but at that moment it just exploded: when telling everything to my parents, I got angry like I never had before, crying like I never had before, taping against walls and asking "WHY ME?! WHY ME?!". But, in the middle of all this desperation, one thought ultimately subsisted: there's GOTTA be a way to cure this and I'll find it, no matter what.

I scheduled an appointment to the urologist.

Phase 4 (1 week and a half - May 2016)

And here, the strangest part of all starts happening. Right the day after I said everything to my parents and basically threw everything out by getting extremely angry and crying, crying a lot (could it be related? Sounds preposterous... My problem didn't seem psychological in any way, still, that's a pretty weird coincidence...) ; I noticed two symptoms that appeared simultaneously:

- The "very hard thing" inside my penis was a lot softer, and my penis was even more numb (it had been, like 90-95% numb for an entire year, but there it was like 99% numb).
- Another one more complicated to explain but that was very noticeable: I could "flex" (not sure if that's the right word: but basically I was able to move it up and down with some muscle, you probably know what I'm talking about) my penis again, especially the glans, when I hadn't been able to do it for an entire year. Almost like some muscle had been trapped for that entire year and suddenly started functioning well again without any apparent reason.

So what happened is that it stayed that way for 3-4 days: still massively retracted and curved during erections but that "hard thing" inside seemed a lot softer and I could again move my penis with those muscles I mentioned, just like I could before (could this have been the root of the whole problem? I have no idea). I didn't take these symptoms as signs of improvement, I was still extremly depressed and never in a million years could I have guessed what ended up happening in the following days.

What happened in the following days was... A miracle (I mean, of course not literally, there's gotta be an explanation, but I still haven't found one), plain and simple. I started noticing that ALL the symptoms that had been there for AN ENTIRE YEAR WITHOUT ANY SIGN OF IMPROVEMENT started to improve simultaneously and very quickly, in a few days I was experiencing massive improvements day by day: reduced curvature, increased length, increased girth, increased sensation, better ejaculation, further softening of that "hard thing" inside, etc. Basically my old dick was, once again, coming back! Shockingly, whatever I had during that entire year, including the curvature, wasn't anything irreversible and during that whole time my penis wasn't dead at all! It's almost like something (whatever it was) was just "deactivated" that whole time and once it was "reactivated" (no idea what caused it) my penis started going back to normal in a matter of days! I know this all sounds completely crazy, but even I still have a hard time wraping my head around it.

So it's in the middle of that week of dramatic and completely unexpected improvement that I went to the urologist. He said he could feel a plaque and I told him how it was disappearing in the last few days after having stayed the same way during an entire year, and he just prescribed me vitamin E. But I don't think I even took it during that week of improvement, it was improving anyway! I was of course happy but also a bit worried, I thought that this thing was so strange that it could come back...

Phase 5 (May 2016 - Today)

And, of course, it would've been too easy to just get my old penis back during that week... Even though it was exactly what was happening! So, as I said, it was getting drastically better day by day during that week and at the end of the week I basically had 90-95% of my normal penis back, in all respects: curvature (and a very severe one, again!) almost completely gone, erections firm, strong, and straight again, perfect and pleasurable sensation and ejaculation again, the "hard thing" inside was like 90% gone... So, basically, I had my old penis back and, judging by the drastic improvement of that week the only logical thing that could possibly happen was for it to come back 100% to normal the following day! But, again, it would've been too easy...

So the following day (after I had 90-95% of my old penis back), the curvature in the middle had completely disappeared but... Another one apppeared at the base of the penis like, right the same day that the other one disappeared! COMPLETELY CRAZY, HOW ON EARTH IS THERE AN EXPLANATION FOR THAT?! It's like it was immediately replaced, I didn't even get to enjoy 1 day or even a few hours with my 100% normal penis again, the old disease (phase 3, basically) went away in about a week of dramatic improvement (phase 4) but was IMMEDIATELY replaced by another one! So that day I had an erection and noticed that the curvature in the middle was 100% gone but another one appeared and the texture of the penis also changed, it became very rubbery and it took a weird, more cylindric shape, if that makes any sense. So the following days what happened was that I had that penis with a slight curvature (to the left, again) at the base with that rubbery texture, and I struggled again to move it with those muscles I mentioned above, and it stayed basically COMPLETELY numb for a few days. What's weird is that, as compared to my normal penis, the texture was clearly different as I said, but the length was still about the same, it's the girth that greatly reduced during these few days.

And I fear that the bad masturbatory habits I always had (rubbing my penis against my left thigh) in some way impeded the miraculous recovery process I was having during that week...

And basically in a few days it went from completely numb to semi-numb (clearly more sensation than during phase 3 but clearly less than my normal penis) only and the length also diminished pretty drastically but not as much as during phase 3. It's a very rough estimation, but I'd say it was, like 50% of the size (maybe something like 60% of the length, and 40% of the girth) of my normal penis with that weird, rubbery texture, and that (also slighter) curvature at the base. The erectile function was clearly a lot worse than my normal erectile function but it was also clearly better than during phase 3. As compared to phase 3 my erections were a bit easier to get, and less curved, but they were also laughably, incredibly soft and with that weird (sometimes hard, but not "erection hard" if that makes sense) texture.

But... All of this started improving (albeit VERY, VERY slowly) in the following months: I was gradually regaining length and girth, erections were getting better but still laughably soft, the curvature was diminishing, etc. I felt that something was clearly getting better, but the weird thing is that it was very, very slow this time and something still seemed off: I had again that "hard thing" inside although this time there was a lot more variation (sometimes I could sense that hard thing and other times it just felt numb), and my erections were still a lot softer than when I had my normal penis.
So I went to the same urologist in december 2016 and he said that the plaque he had felt the last time was COMPLETELY gone and that this time he could sense a plaque at the base but that it was a very, very small one, much smaller than the previous one.

It kept improving extremely slowly from may 2016 to about the summer of 2017, and I don't feel like there's that much of a difference between the summer of 2017 and today.

So, today, and again without any treatment, basically I regained most of my length (80-90%, probably), the girth seems a bit more affected but most of it (probably something like 70%) is back. And yet... The weird texture remains, there still seems to be a slight and diffuse curvature when my penis is erect and my erections are a lot softer and go away much quicker than when I had my normal penis. It's also semi-numb, not completely but very far from the sensation I had when it was normal. I can have some pleasure with the ejaculations but nowhere near as much as when it was normal.

Of course, it's lightyears better than phase 3 that I mentioned earlier, it's not even close, but it also seems to be light years from my normal penis, not so much in terms of size and girth but in terms of texture, sensation, and erectile function. Also, that's again a hard part to describe but I'm sure it's an important one: I can't move my penis up and down with those "muscles" I mentioned earlier the same way I could when my penis was normal and during phase 4 (the week of dramatic improvement, of which that was the first symptom).

Now, I had been living all these years thinking to myself that my case (in the current phase, from may 2016 to today) was just some form of Peyronie that mostly went away by itself because I have virtually no curvature as of today so it's not very dramatic anyway. Yet, I can clearly see that something's off in terms of the erections, the sensation, and even the overall shape as compared to my normal penis...

So since about a month and a half I'm basically in a depression again, and I think I had always been in a sort of mild depressed state for years because, well, something's still clearly f*cked up with my dick and as it is now I don't think I could have sex with it! So I started googling like crazy trying to find what I have but my case is just so exceptionally weird that there seems to be NOTHING similar in the whole Internet! I looked into penile fibrosis, venous leakage, and basically thought I had all those things during that last month, but at this point I just have absolutely no idea...

For a few days in the beginning of january I literally couldn't do anything else than spend my days on the Internet looking for an answer, while being extremely nervous and at that time I couldn't get ANY erection (not even a soft one), and it felt like that "hard thing" inside my penis (that's still there but at times it looks very soft and at other times very hard) was getting hard like a rock again. So I got even more anxious by thinking I had arrived at a state of TOTAL erectile dysfunction, not even soft erections. Turns out it wasn't the case, so maybe there's a small psychological aspect to this but it can't be the whole thing... I mean, how can psychological erectile dysfunction be so severe that you don't have hard erections in years and that the sensation, length, girth, etc (both when flaccid and erect) are all less than when the penis was normal?
I still can get erections but they're just... Soft, and a lot less pleasurable than when my penis was normal. And there seems to be no progress since 2017.

So... I went to an urologist (a different one than the one in 2016 I mentioned earlier) in the last month, she said she couldn't feel ANY plaques in my penis and that it seemed like a completely normal penis (even though, I clearly see a difference with what I can remember from my normal penis both when flaccid and erect). So she prescribed me daily 5 mg Tadalafil to improve the erections and told me to do an exam to check my testosterone levels. The testosterone results are completely OK. As for the tadalafil, I took it for a month and no effect, zero, nada.
I went again to the same urologist today (had made an appointment the last month to see how the medication had worked), I told her that the medication didn't have any effect and that something's gotta be wrong with my penis but I just don't know what. She basically said that my penis looks completely normal, there isn't any plaque, my testosterone levels are fine, and my blood results are perfectly fine too so the problem could ONLY be psychological. Plus she could sense that I'm feeling very anxious. So, since she thinks the problem is entirely psychological, she told me to go see a psychiatrist to sort it out. But I still insisted to do an exam of my penis so she said that we would an MRI before I go to the psychiatrist but that the only possible result is that it will come perfectly fine.

So I'm completely lost right now, I have absolutely no idea what I have and why my dick isn't functioning correctly... I mean it's true that I'm very anxious and that I have been for the last few years (mostly as a consequence of not having my dick working properly), but HOW ON EARTH COULD THIS BE THE REASON WHY I HADN'T HAD A STRONG ERECTION IN YEARS?! I'm 22, and everything in my body and my penis is apparently alright, so why can't it possibly get hard?

The fact is, as compared to my normal penis I currently have a different shape (both when flaccid and erect), a bit less length & girth, clearly softer erections (I pretty much can't get a hard erection since 2015, and that phase 4 in 2016 that I talked so much about), and a weird texture plus that weird thick "thing" inside that's sometimes very soft but sometimes gets very hard (even when flaccid) when I'm very nervous. So, again, I'm willing to accept that there may be some psychological factor in this, but I have a hard time believing that my whole problem (or even most of it) is psychological... Just because I'm anxious doesn't mean there's no physical problem.

Anyway, sorry if this is all extremely long and confusing, if I repeated myself a lot and if I sounded angry in this message. My case just seems so completely crazy and improbable and I just don't understand why my dick doesn't seem to work even though everything is apparently alright...

Hope I will get some help and support in this forum in getting rid of whatever the problem with my dick is. My fear is to never be able to have sex, that's it. I'd really be the happiest person in the world if I can get just get my penis to be good enough to have pleasurable sex with a beautiful women. Really, that's all I want, all other problems I have in my life seem so small in comparison. I can't even imagine my level of joy and happiness if I manage to get rid of this absolutely crazy problem...

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Re: Exceptionally weird case of ED/Peyronie/something else?

Postby Frank Talk Admin » Wed Feb 19, 2020 3:09 pm

Please email me at paul at franktalk.org.
I cannot be 100% sure, but I am betting everything that you have Chronic Pelvic Pain Syndrome also known as - Hard Flaccid also known as pelvic floor dysfunction. You definitely have an underlying anxiety disorder as well. Your penile issues are due to the pelvic floor network of muscles being super tight and going into spasm. The more anxious you are, the more spasm. So, the penis issues are not psychogenic, but the pelvic floor tightness is....but it is also genetics, body mechanics, stress, anxiety, posture, how you use your body, etc.
it is VERY fixable with pelvic floor specialist. You also need medication for anxiety AND talk therapy to help manage the anxiety.

there is much more, but that is a start.

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