Long time sufferer, young. Tokyo.

[NeoV]

Hi everyone, I've been a lurker here for the last 7 years. I'm finally making an account, since I figure by now this is most likely a lifetime issue for me. The active phase seems to have ended for me, and now I am seeing some improvement due to several manual stretching exercises and other changes in the way I have sex. I figure I'll save my account of improvement for another post, since it's quite a lot of stuff.. So let me just introduce myself.

I am from the US, and recently moved to Tokyo. I was warned by my father when I was in my early teens of Peyronies, since he also has it (and dupuytren's), he warned me to be careful not to injure myself. I was always very careful because of this during sex, but for me it didn't seem to matter much, since I was 18 or so I remember having chronic flare ups of peyronies after orgasm, sadly this type of onset is hardly documented or acknowledged, and my urologist back then just told me I didn't have peyronies, he said I had prostatitis.

I should mention now, that since a kid I have had a very high erection angle, as well as a congenital upward curve. I strongly strongly believe that these two factors increased my chances of developing peyronies as I did. Having a short/tight suspension ligament gave me a kind of hinge point on my penis for as long as I can recall. Any time I would try rear entry positions It would put a massive strain on my penis. The hinge point also decreased blood flow to the area of my penis that is now affected by peyronies. Lastly it might be helpful to mention that I  have been an obsessively healthy eater and exercises all my life, something I learned from my dad. While unsure, I also attribute PC muscle clamping to my development of the disease, since at an early age I relied on clamping my muscles in order to orgasm, causing extreme pain afterwards in many cases followed by a peyronies flareup.

Moving on, after years of having these flareups, which would make my penis completely bent and twisted upside-down until it subsided, it eventually turned into a chronic deformity resulting in just two dents, hardly an issue for me back then when I was 20 or so. However, several years ago things started to get worse. The flareups increased in severity, and I found myself resorting to manual stretching post ejaculation in order to keep my penis straight. This, combined with perhaps two notable sexual experiences where my penis was slightly bent too much, resulted in a full blown development of peyronies when I was 23.

What happened to me then were a serious of changes in my penis shape, I was horrified to see the two dents slowly bend my penis upward. I took pentox, uniquinol, arginine, acetyl carnitine, fish oil, and other supplements to no avail. I struggled to find treatment, since I was experiencing peyronies along with prostatitis symptoms, and strangely both symptoms coincided like clockwork, something else that is not properly documented as far as I know.

After about a year of what was probably the active phase, I can now say it has seemed to stabilize and even improve some. Even so it causes a lot of discomfort, and sex feels odd, as if my penis is not properly filling up with blood. I'd really like to make a post about how I have managed my peyronies, since I think it's a bit different than others, consisting of several manual stretching techniques and manual pumping using PC muscles. I also have changed the way I orgasm and have not since had a single flareup for one month now.

I recently went to a specialist in Tokyo (the only specialist?). The doctor confirmed I had fibrosis in my penis just by examination. In Japan they do not have pentox, rather they use a Japanese drug called Tranilast. Tranilast deserves it's own thread as well, since it's quite unique being a drug developed here.

Anyway guys, I just wanted to say hi before making a few other threads. I'll be on tranilast from now on, and continuing to try to improve my situation with manual exercises.

I'd also really like to offer my sympathies with all of you. This disease is something that just leaves me speechless. The psychological aspect is beyond words, and my case is certainly not a severe one. I just want to let you all know that I'm here to chat or just talk any time. Especially for you guys who are younger. There is so much that needs to to be said about this disease.

Be posting again soon perhaps,

regards.

[LWillisjr]

Welcome NeoV,
Please don't hesitate to post and provide additional information. Thanks for joining the forum, but sorry you have this disease.

[Franklyn]

Thank you NeoV for sharing your experience,strength and hope. I am new to the site and the disease.

     Thanks again.

[KAC]

Thanks for sharing your story. It sounds like you have some interesting approaches.  I'd be interested to know what you mean by manual pumping using PC muscles.

[funnyfarm]

when you say "pc" muscles do you mean pelvic floor muscles ?  I think it is natural to tighten the pelvic floor before orgasm and then loosen it after, so I doubt this would be a factor in you peyronies.  

[NeoV]

Thank you very much for all of the replies, despite my quite long thread. It means a lot.

When I say PC muscles, I mean my PCs, but possibly other muscles are being tightened as well when I do this. I do not mean clenching only once, but prolonged clenching.

It may not be true for others, but I can almost entirely avoid an inflammatory response post ejaculation by avoiding doing this. The reason being is that it traps blood in my penis while it is not at full erection capacity.
It also traps blood primarily above my scar, whereas having sex or masturbating without tightening my PCs and or pelvic muscles causes my entire penis to be filled with blood. This makes the resulting ejaculation feel much more natural, instead of partially losing the erection after unclenching, which is inevitable in order to ejaculate.

As I said, I think I may have injured myself in the past doing this, though I cannot backup my claims with anything other than my own experiences back then. I have memories of tightening those muscles so hard for so long, as if I was straining them in order to ejaculate. Looking back, I can't believe I let myself do that so forcefully.. Luckily I no longer have to do this, but It did result in a lot of pain for me then as well as the peyronies flareups which were quite bad.

[funnyfarm]

I find it easier to climax when I am clenching the abdomen and pelvic muscles (probably just from habit), but I also have a lot of prostate/pelvic inflammation (not peyronies related).  So based on your post I am wondering if tightening like this might be the source of my inflamatory problems ?  I will discuss this with my doctor next week, but thank you for bringing it up.  

BTW, in my case I do not notice a difference in erection quality whether I clench or not..  

[NeoV]

Funnyfarm, your case sounds a lot like mine..

My prostate and urethra problems have really been awful this past year. Somehow I seemed to have knocked them out along with the peyronies inflammation by masturbating without clenching. I also asked a doctor about clenching, but she said It's normal and shouldn't cause problems. I have to say I 100% disagree with that, and I think it causes major problems if only because it exhausts the muscles prior to ejaculation, causing a weaker ejaculation allowing for sperm to not fully exit the sperm ducts or prostate.

I took some peoples advice on a forum, and started making sure I ejaculated much more volume each time, and also (don't laugh), I started ejaculating while squatting down caveman style so my pelvic floor muscles are completely relaxed. Squatting is one of the only positions that really relieves stress on the area. This was actually someone's advice on a forum.

Following some people's advice, I basically outlawed sitting ejaculation, lying on back ejaculation, and clenching to achieve orgasm. There seems to be correlation with post ejaculatory prostate pain and not getting enough sperm out each ejaculation. Some people report having relief by simply ejaculating again. In my case this is often true as well. Oddly, when I focus on more powerful ejaculations this way, pain seems to be completely absent afterward. I think it is important, and of course necessary to clench during ejaculation, but I would not recommend relying on it to achieve it or "orgasm". I've gotten most relief by having strong ejaculations where I basically had 4 "pumps" or so. The only way I could do this was by really relaxing the pelvic area, and then pumping away during ejaculation.

As mysterious as it is, for me and for many these guidelines seem to help.

[funnyfarm]

I am going to try this. Thanks.  I do notice after some ejaculations I feel fine, and after others the soreness is aweful.  I could never figure out why.

Let me ask though, have you tried not ejaculating for a few weeks or months ?  In my case I still get the inflammation, although it is possible I am still clenching at times, or the prostate is getting congested from semen buildup.  There is so little information about this situation out there.  

[NeoV]

Funnyfarm, please do try this. Always masturbate softly, and long enough to really build up the ejaculation, then squat down and get your pelvic floor relaxed before letting it all out. Get as many "pumps" as possible.

There is very little information about this for sure. But by god it has saved me...  I have tried not masturbating for several weeks and one month before. I actually did get inflammation in the penis and prostate during that time, as well as sperm leakage during urination. It was interesting actually, since it was during the leakage that inflammation got very bad in particular. I think sperm does build up and become problematic.

The first time i noticed the difference was with sex. I remember having the same thing as you do. Sometimes after sex, usually sex rather than masturbation, I would feel fine, and somewhat "empty" down in the prostate rather than feeling "congested". I attribute this to the same thing.. Also during one of my most painful episodes, I had sex again with my girlfriend and the pain was immediately gone. I could not reproduce this effect back then, and I didn't really know what I do now.

Good luck! Seriously ejaculate on the floor if you can, as much as possible. That's what I have come to do simply out of desperateness. And it's working. If I don't get enough pumps or enough out, I can tell the difference easily. It may be a structural defect that some men have, or it may be a kind of neural dysfunction. Either way It helps me and others as reported on some forums. I do hope it works for you, please let me know via PM or anything.

[funnyfarm]

Yes I definitely should try this because when I do masturbate, which is very infrequently, I now ejaculate in 30-60 seconds since the build up is so great.    I remember reading once that the body produces pre-ejaculate (the clear fluid) before ejaculation because the ejaculate fluid is irritating to the urethra.   It is possible we produce this pre-ejaculate, which coats the prostrate/urethral membranes, slower than other guys (or in my case, I am now just climaxing too fast).  

And yes I have seen the semenal fluid in urine too. I also have had some retrograde ejaculations (some semen goes into the bladder instead of out the penis).  I now suspect this might be related to PC clenching also.

One question though, when you say "squat caveman style".  Do you mean kneeling with knees and hand on the ground ? And then you do clench and relax alternately as you are pumping during the ejaculation ?

many thanks !

[Old Man]

FF:

The clear pre-ejaculate fluid you are talking about is your body's was of making lubrication for sexual activity. It is readily produced when one is doing pre coitus foreplay with one's mate. It also occurs during masturbation if one does not ''work too fast'' with manual stimulation.

The above is information furnished by my personal uro during a time of my much younger and hornier days!!

Old Man

[NeoV]

One question though, when you say "squat caveman style".  Do you mean kneeling with knees and hand on the ground ? And then you do clench and relax alternately as you are pumping during the ejaculation ?

[Quote modified by moderator. Please avoid full quotes from previous replies.]

Hey FF, sorry if I could not explain properly. I mean squat, while staying on your feet. So no knees or hands on the ground. It's how someone would squat next to a fireplace. Let your but sink down and rest your elbows on your knees if you need to. Your feet will not be flat most likely, you will be on the front part of both feet while doing so. Its probably how you would squat down if you were using a Japanese toilet. I think googling "people squatting" will show you it, though I don't know how people manage to be flat footed.

Also yes I do alternate, some people call the relaxing portion a "reverse kegel", certainly worth reading about. A reverse kegel involves "pushing" in order to relax the muscles. So a push followed by a clench.  

[funnyfarm]

Okay thanks I got it.  BTW I have been to Asia and prefer the squat toilet even though I am a white guy