New to all this, but have had condition for 2 years

[powerlift66]

I wanted to say hello to everyone, I just signed up here and had a few questions.

I have the typical "firm flaccid" thing going on, pretty badly. Not only does the shrinking of size really suck (Goes from 6 inches limp down to much less) Obtaining erections takes work, they aren't as big as they used to be, and my penis feels like a firm block of rubber.

I am seeing a doctor in a week, and I am going to try to start on Pentox I believe it's called, combined with cialis. I have heard this really pushes new blood into the penis, and breaks down the hardness.

I do not have any lumps, but rather my entire shaft just feels really hard, which bothers the hell out of me.

if anyone can give me any adive or actual testimonials from treatment and improvement that would be great. I want my penis and my sex life back.

[GS]

Before I got Peyronies, I never really paid much attention to my penis.  In those days it was either erect or flaccid.  Now, I'm constantly pulling on it, bending it, touching it to see how it feels or putting it in a VED to pull blood into it.  My point being, some of the different degrees of firmness, etc. may have always been there and I just never noticed.

After you see your doctor, you may or may not know a lot more about your condition.  It all depends on his level of expertice about penises in general and Peyronies in particular.

My best advice is to do a lot of research on this website and others, before you see your doctor and have your questions written down so you don't forget to ask them.  Quite frankly, there is so much information available and the issues are so clouded, you may feel a lot more confused before you feel better and have some idea of what is going on.  If Peyronies were simple, a cure for it would have been found a long time ago.

Remember, at this time, there is no cure...there are treatments...some of them may work...some of them may not.  It's all very complicated and confusing...and you can spend a lot of time and money chasing an unknown cure.

Anyway, those are just some of my thoughts and I hope they are helpful.

GS

[Fred22]

I would say to go ahead and get on ubiquinol.  It may take a while to find a urologist who's willing to prescribe pentox.  It seems that what helps one pperson will not help another...each case can be vastly different.  I was in pain for almost 5 years when I got on ubiquinol 100 mg. 3 times a day and it definiltely helped a lot with the pain (don't think you mentioned pain but it could help with the problems you're having....worth a try).  Of course, it's always something.  I was diagnosed with prostate cancer on April11 and have probably had it for a while, which could explain some of the pain I was having and thinking it was the Peyronie's.  But the ubiquinol has helped quite a few here (check out the thread on alternative treatments, and oral treatments forums)....Good luck and sorry to hear you've joined the club.  

[powerlift66]

Thanks for the info guys, so this "firm flaccid" thing is usually the start of it?

About not getting prescribed it, I drive a very hard bargain in a doctors office, if I go in to see him, he WILL be giving me something or doing more tests. If he refuses I will just find another way to make it happen.  

[GS]

I am not sure how common "firm flaccid" is with Peyronies, but I experience it often.  Then, at other times my flaccid penis is just like I remember it being before I got Peyronies.

I think you will find there are a lot of different symptoms associated with this SOB disease.

GS

[chefcasey]

The firm flaccid was the first thing i noticed.  It's hard not to notice it when all of a sudden your dick feels like it's in a cast.  The rubbery feeling when erect is also pretty common.  The culprit is scar tissue.  Pentox and other drugs can prevent it from getting worse, or soften it slightly, but don't be fooled, it ain't going away.  The only thing that will break down scar tissue is xiaflex, and that's at least a year away if approved.

[powerlift66]

Damn it looks like we are very new to this whole disease thing. I must have it to a lighter degree than most by hearing and reading other people symptoms. I have also been using an extender and a pump (among hanging/clamping) because I started doing natural PE (penis enlargement) upon finding the forum thunders place. Looks like it's a good thing that I started when I did!

I have a feeling the pentox and cialis will help me, mainly the pentox though. What do people think about caverject treatment? Could those prolonged erections (2-4 hours) help or make this worse?

I am going to research xiaflex right now. No sure for this sounds a little severe, this isn't aids. I have a natural doctor who says putting castor oil along with a few other ingredients on the penis will remove scar tissue when combined with heat.

[chefcasey]

I think most people here would say to stay away from the PE type stuff.  Extenders and pumps have some evidence showing their usefulness in stretching out scar tissue, but I would stay away from stuff like jelqing, clamping, etc.  There's absolutely no evidence that they do anything constructive, and in fact may make things worse.  There's also been quite a lot of people who've experimented with castor oil and other topical concoctions on their penises, all with no results.  Think about it, if you apply the same principal, rubbing castor oil, or anything else for that matter to a scar on your skin, will it remove the scar?  No, and the same principal applies to scar in your penis.  The reason I say xiaflex is because it is an enzyme currently being tested that actually eats hard collagen fibers that make up scar tissue.  I don't mean to dash your hopes with certain things, but if you can think of it, you'll find someone who's done it on this forum with disappointing results.

[crashbandit]

I highly recommend Cialis for a nicer hanging flaccid penis. Also I found Trazodone 25mg nightly dose to be awesome for nightly erections and daily healthy, girthy hang. Both require prescriptions.

[torn]

After I had used a pens pump (the one and only time) I started to gradually develop the hard flaccid state. Erections were more difficult to achieve and eventually morning and night erections almost completely ceased to exist. About a month ago I took cipro for a suspected uti and that's when the bump and curve began for me. Life is hell.

It kills me just thinking back to 3 years ago and how great sex was. Erections literally came at the drop of a dime. All I needed was just a brief sexual thought and my dick would be rock hard and throbbing... today, I can barely keep it up during sex. Forget spontaneous erections as I haven't had those in over a year. The firm flaccid state is so uncomfortable. It always feels like my pens isn't getting enough bloodflow to it. And it has also lost girth and to a lesser extent, length.

I've been on ubiquinol and vitamin e for a few weeks and am waiting for generic peoxnt to come in the mail.this "disease" has brought my mind to such a dark place. I feel so alone and sad... especially when I remember how amazing sex was, how intense oral sex felt, etc.
Its so easy to take your sexual function for granted until it becomes impaired.
Id do anything to go back to normal.  

[powerlift66]

Not at all man, I appreciate the honesty. I am pulling for this xiaflex stuff to get approved that sounds great. I will lay off the jelqing and clamping, pumping seems to almost always be great for me. I had no idea this firm flaccid thing was peyronies. I thought it was a neurotransmitter thing, because whenever I was on an anti depressant, the issue would usually almost completely go away!

Anything that raised dopamine or mellowed me out (Remeron at the moment) would make it hang nice, full, and loose. I look forward to trying the pentox, it is REALLY hard to find a good log about it on here, one person will start one, then it's flooded with whining and questions and the guy never seems to report back at the 1 month, 2 month mark etc.

I think most people here would say to stay away from the PE type stuff.  Extenders and pumps have some evidence showing their usefulness in stretching out scar tissue, but I would stay away from stuff like jelqing, clamping, etc.  There's absolutely no evidence that they do anything constructive, and in fact may make things worse.  There's also been quite a lot of people who've experimented with castor oil and other topical concoctions on their penises, all with no results.  Think about it, if you apply the same principal, rubbing castor oil, or anything else for that matter to a scar on your skin, will it remove the scar?  No, and the same principal applies to scar in your penis.  The reason I say xiaflex is because it is an enzyme currently being tested that actually eats hard collagen fibers that make up scar tissue.  I don't mean to dash your hopes with certain things, but if you can think of it, you'll find someone who's done it on this forum with disappointing results.

[powerlift66]

I also wanted to add, I do not have any curvature or pain...just a firm flaccid about 60-70% of the time.

[chefcasey]

I also didn't have curvature or pain, at least in the beginning.  Scar tissue likes to contract though, and that's when I noticed something was wrong.  That's the problem with this disease.  Once you realize there is a problem, scar tissue is already there and it's damn near impossible to get rid of.  Also, most men don't get the hard flaccid 100% of the time.  For me it's about 50%.  If it hangs with more blood throughout the day it will mask the hard flaccid feeling, but as soon as blood runs out of it, you'll see the hard flaccid because the scar tissue in the tunica is inflexible.  But if you're still unsure about it, visit a urologist and request a penile ultrasound.  That will clearly show whether or not you have scar tissue in the penis.

[powerlift66]

I am pretty damn sure of it, I am seeing a urologist in 4 days. I am going to request these tests but also try to get pentox out of him, if not I'll get it online.

[Worried Guy]

I'm not sure the hard flaccid thing has anything to do with peyronies.  Peyronies is just scar tissue.  If you only have a cm or two of scar tissue why would this make the whole penis hard?  I believe it has more to do with temperature and how the penis has been hagging before you feel it.  I also believe it is because guys with peyronie's keep examining themselves. We notice a lot more what is going on downstairs where as before we would not give it a second thought!  Perhaps my penis was always flaccid hard before sometimes.

[LWillisjr]

There are enough here with pain and the hard flacid condition that I think there is something to it. I just don't know that it falls under the umbrella of Peyronies Disease. I think there is confusion and disagreement on what Peyronies actually is. Maybe the hard flacid is a condition that hasn't been documented yet.

[crashbandit]

Here's a great thread about hard flaccid penis state, they talk alot about alpha blockers (like Tamsulosin). Are Alpha blockers dangerous like beta-blockers for Peyronies Disease?

http://www.medhelp.org/posts/Mens-Health/Continuation-of-Penis-hard-when-flaccid-thread/show/1122440

I agree with worried guy that an overall hardening flaccid penis is not scar tissue but rather a strangling type effect. I get the shrunken penis usually when my pain is at its worst. So the more pain I'm experiencing, the more shrunken my penis seems. I also don't have a curve or deformity, just a shrunken painful penis.

Powerlift, I'm curious as to what Remeron is?? Is this an anti-depressant type thing? I'm thinking it might be similar to trazodone? I could be way off there of course. But I'm interested in anything that gives a great hang. I know Cialis gives me a great hang but I'm havin problems with flushing in the face and trazodone works great too but only for about a month tops and then it's none affective. Have you used Remeron for awhile? Any plus' or minus' you can tell me about? Thanks

[Worried Guy]

I think this hard flaccid thing could also be to do with how we are feeling.  I'm not talking about stimulation but if you are feeling down, happy or perhaps are in pain.  Most of us are pretty anxious about Peyronies and this could cause less blood to flow down there.  When I know I'm going to see my uro or doctor and am a little nervous, not about the fact that I'm showing my dick but about the bad news they may give me, my penis gets its smallest.  Now a little scar tissue would not do this to my whole penis.  If I was having an autoimmune responce and my body was trying to mend the area then my penis would be like that all the time.  It is not.  Sometimes when my penis is hard flaccid I just give it a little shake as you would if you were getting the last drop of pee off before you put it away and this loosens things up.  I believe this part of peyronies is us just taking greater interest in our bits.  I could be wrong though.

[jetedwardz]

yea the last few posts touched on what i was thinkin readin your posts. u  may not even have peyronies disease and you don't have any bend that is a huge plus; because with me and most on here that starts to really destroy my self respect or whatever pertaining to adequecy etc... and i dont care if i could of had sex when my bend was at its worse or even half its worse i didnt want to show it and even with the lights out when i had a lesser bend i was wondering if she could tell etcetc. so def be thankful bout that aspect of your situation and if it is peyronies and ur using a ved and taking the supplements often used by members on here id say u are a step ahead of the game as i know with me and prob others i didnt even diagnose my self and then officially get diagnosed till my bend was like 20 % and the hourglassing was in full swing. thats when i started with the supplements and tried to masturbate as often as possible maybe 4 or 5 times a week using the opposite hand as the bend direction  

[Fred22]

I also wanted to add, I do not have any curvature or pain...just a firm flaccid about 60-70% of the time.

Consider yourself fortunate!

[powerlift66]

Met with the urologist, he examined me and said it felt normal to him. I asked him why my penis felt like the wall directly to my left, instead of how it used to feel spongy and I asked why the smooth muscle was contracting, and he replied with "Even if I assume everything you say is accurate, there is no treatment I could offer you" He said I had no plaquing and did not have peyronies. I am going to look for other treatments.

[powerlift66]

Tthe more i think about it the more that urologist pissed me off. My dick is tighter firmer and smaller than ever. I shoukd have told him without cialis my erections are very weak and i NEVER have them at night or in the morning. I have high hopes pentox and cialis will help but i feel i should get an ultrasound first.

[powerlift66]

Started the Pentox, doesn't seem to do much on it's own without the cialis, which I am still waiting on. I just can't wrap my head around why I am shrivelled up all the time. A friend of mine said smoking makes it worse, however anything that seems to decrease anxiety for me makes it a little better...maybe this is a neurotransmitter thing?

Only thing I have done which could cause this physically is Quadmix or (caverject) in simler terms, but my flaccid was semi firm a lot of the time before I ever had those 4-6 hour erections...too bad the goal was just for 2 hours.

Anyone have any experience?

[Worried Guy]

Smoking is bad for circulation.  It's been proven that up to 20 minutes after a smoke your hands and feet will be colder because of the effect on circulation.  Can't be good for downstairs.