Progression of Peyronie's Disease

[Tim468]

gerMike

I absolutely agree regarding the testosterone. I also think, though, that other conditions can lead to gradual progression as well.

Tim

[bent70]

Hi gerMike
I just had my testosterone tested. My doc told me I had the levels of an 80 year old man, my levels were really low, I'm 38....Have you been put on any medication for that?

I'm one year into this disease and so far it shows no signs of slowing down. I'm still experiencing periods of pain and the scarring which started across the top of my penis has now spread to the left side - of course so begins the bend on that side. I was only dealing with a worsening upwards bend - now its changing quite rapidly and bending fast - just over this past couple of days. I was hoping that things would start to stabilize a little soon....But it doesn't look as though that's going to happen. Your post only made me feel even more sure of that!

[Iceman]

bent 70:

have you tried using a VED and are you on any oral meds; even pentox?? - I mean what are you doing to try to stop this - I am only saying this because my pain seems to have stopped after 1 year - the last 2 weeks have been bliss - no pain at all - i am on all the oral meds written up here plus ved

[bent70]

Hi Iceman

Unfortunately for the first 9 months or so of dealing with this I was under the misguided belief that it was best to watch and wait whilst taking Vit E. My Dad also has Peyronies as does his brother, my uncle had a series of verapamil injections that cured his Peyronies - he says completely, but after doing some reading here I went off that idea. When I spoke to Dad about it he mentioned that he was told by his urologist that there was nothing really that he could do except take Vit E and hope for the best.

About 6 weeks ago I discovered this place and read up like crazy. I'm still taking Vit E and have been taking L-Arginine for the last 5 weeks. The first urologist I saw didn't know much about Pentox being used for Peyronies, so I'm making an appt with another (made the mistake of seeing the same one my Dad went to) After all the reading I've done here I don't pin too many hopes on being helped much by seeing a urologist - I'm only going on the hope that he'll prescribe Pentox.

[mikesb]

Well had my meeting with the uro today. Most disheartening. He looked at my photo and told me my case was not very bad at all and that until such time as severe enough "waisting" occurs (which he deemed unlikely) not much could or should be done. If ever intercourse becomes a problem then and only then would a surgical approach be considered. I was flabbergasted and explained my concern about not addressing what seems to be an active situation! I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much but suggested I research Wayne Hellstrom and traction because none of those devices are available in Canada. I have searched the site and found no reference to another urologist in the Toronto area, only to the what now seems defunct ESWT clinic. Anybody have some names for Toronto Ontario Canada or am I going to have to go stateside (Detroit, Buffalo etc) in search of a proactive approach?

Kind regards to all

Mike

Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.

The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".

Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.

These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.

I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.

Thank you all here for what you do, a great service to man.

Regards

Mike

[Hawk]

I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much...

Mike,

I think this underscores the need for any new patient to assume this may be the response of an unproven urologist.  Based on that assumption you must go loaded for bear as they say (in these parts).  You must be prepared with studies, and protocols of leading urologists.  You may even first have to establish the credentials of a urologist then introduce his protocol.  Granted, this also may not be enough but it is a patient's best shot.

[LWillisjr]

Hawk,
I totally agree. The thing is that many of these well established urologists are good for more common male urological issues. But they don't know jack (sorry jack) about Peyronies, but they either don't know or don't stay up on current Peyronies Disease therapies.

[jmaxx]

""We have experimentally manipulated healing adult wounds by neutralizing PDGF, neutralizing TGFbeta1 and TGFbeta2 or adding exogenous TGFbeta3. These experiments result in scar-free wound healing in the adult. Such experiments have allowed the identification of therapeutic targets to which we have developed novel pharmaceutical molecules, which markedly improve or completely prevent scarring during adult wound healing in experimental animals. Some of these new drugs have successfully completed safety and other studies, such that they have entered human clinical trials with approval from the appropriate regulatory authorities.

Initial trials involve application of the drug or placebo in a double-blind randomized design, to experimental incision or punch biopsy wounds under the arms of human volunteers. Based on encouraging results from such human volunteer studies, the lead drugs have now entered human patient-based trials e.g. in skin graft donor sites.""

Read the above and know that my peyronies is healing because I did what you "lurkers" did not do.   I got the attention that my peyronies needs by following the aggressive lead that women made with breast cancer.  Breast cancer gets all kinds of attention because of aggressive marketing and awareness campaigns.  And that is what I did.  I knocked on doors, I went and visited doctors, I got parking tickets, I mailed letters, made phone calls.  In short lurkers, I got out in the real world!  You lurkers are content to sit in front of you computer and complain to your support group that your dick doesn't work.  Well that's not good enough lurkers.  You got to get yourselves heard in the real world.  

How is the treatment working for me?  Great!  Where am I getting the treatment?  Sorry lurkers, since you refuse to get off your computers and get out in the real world I am not going to help you.  

I will leave you with this quote; "If you want to play ball, there comes a time when you have to leave the clubhouse and get out on the field."

[George999]

How is the treatment working for me?  Great!

Congratulations jxyz!  I am glad for you.  I am delighted to hear that you have found and are benefiting from the ultimate solution.  Thank you so much for "sharing"!  Now all the rest of us can go back to our "lurking".- George

[Tim468]

Dear Jxyz,

You are of course writing about the experimental work done by Ferguson and the exact beginning of the quote (actually you left out the beginning) says: "We have experimentally manipulated healing adult wounds in mice, rats and pigs to mimic the scar-free embryonic profile, e.g. neutralizing PDGF, neutralizing TGFβ1 and TGFβ2 or adding exogenous TGFβ3."

The abstract (I highly doubt that you have read the original paper) states: "This means that scarring may no longer be an inevitable consequence of modern injury or surgery and that a completely new pharmaceutical approach to the prevention of human scarring is now possible."

It does not state (this was written in 2004) that is is available, just that it is possible; the paper represented a proof of principle. The author did not follow up this work with more peer reviewed papers (or very many) and instead opted to go for it financially by co-founding Renovo, which markets scar creams that work moderately well, although they do not lead to "scar-free" healing.

This has been discussed here before - perhaps you even found the link to this work here. There is no FDA approved injectable available here or in the UK.

Your claim to improvement sounds like BS to me. Your claims to superiority are ill-founded on an erroneous belief that you are the only one who is "doing something" instead of just "lurking". One thing we do here - in fact one of the most important things we do here - is to share what we know and have learned. Your selfish (and probably BS) claims of a cure that you are going to keep secret stand in contrast to your calls to action and duty and solidarity.

And of course, I wonder which "miracle" did it for you:

1) the cialis from Canada you asked about??? ( https://www.peyroniesforum.net/index.php/topic,84.msg14371.html#msg14371 )
2) The TENS unit you asked about??? ( https://www.peyroniesforum.net/index.php/topic,26.msg14477.html#msg14477 )
3) the Perfenidone from Dr. Levine you asked about and vowed to get??? ( https://www.peyroniesforum.net/index.php/topic,36.msg14950.html#msg14950 )
4) Or the Renovo product???

I personally cannot wait to hear!

Oh, and sorry to hear about the parking tickets.

Tim

[Iceman]

hi jxyz -

what meds have you taken and can you please let me know - it would be much appreciated form me ...and all others PLEASE!!!

[Old Man]

Iceman:

Forget asking about the meds and/or drugs, he has stated that we only lurk and do nothing. And, he says he will keep it to himself and not share with others.

Sorry to relate this, but that sounds like the truth about his "research". Now I can go back to just lurking again!!

Old Man

[newguy]

jxyz  - It's understandable that you are very troubled by peyronie's (most of us are), but this kind of post is not helpful. Making such claims does not help you and certainly does not help others.

[alcohen]

Ban the jerk.  What a ridiculous post.  Claiming he has found a cure for his Peyronie's and then refusing to share it with the rest of us because we are not doing anything to better our cause...  Whatever.    

[tinaa]

SO WHAT IS THE BENEFIT OF SUCH A POST!!!!!!!!!!!!!!!

DO YOU THINK YOU ARE HELPING OTHERS THIS WAY!!!

I REALLY FEEL SORRY FOR YOU.

GOD BLESS YOU

[mikesb]

I realize that Hawk and was somewhat loaded for bear however as you can appreciate, here in Canada one of the cons of our social medicare system is that the doctors (and these days urologists) are extremely busy and will not give you the time to engage in much of a discussion. It is my hope though, that in a metropolitan area as large as Toronto, there are/is that unique individual that is already well versed and current and totally into a proactive approach. It is finding him/her that is the buggar. The search goes on!!! I have asked both my own and my wife's GP for any help they can offer in that regard. I will add that (pardon the pun) the "Male Health Clinics" (not covered by medicare) will not touch Peyronie's with a ten foot pole, they are only into ED and PE etc....

I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much...

Mike,

I think this underscores the need for any new patient to assume this may be the response of an unproven urologist.  Based on that assumption you must go loaded for bear as they say (in these parts).  You must be prepared with studies, and protocols of leading urologists.  You may even first have to establish the credentials of a urologist then introduce his protocol.  Granted, this also may not be enough but it is a patient's best shot.

[gerMike]

Hi gerMike
I just had my testosterone tested. My doc told me I had the levels of an 80 year old man, my levels were really low, I'm 38....Have you been put on any medication for that?

I'm one year into this disease and so far it shows no signs of slowing down. I'm still experiencing periods of pain and the scarring which started across the top of my penis has now spread to the left side - of course so begins the bend on that side. I was only dealing with a worsening upwards bend - now its changing quite rapidly and bending fast - just over this past couple of days. I was hoping that things would start to stabilize a little soon....But it doesn't look as though that's going to happen. Your post only made me feel even more sure of that!

My peyronies started the same. First a small nodule on the top that grew to a band like plaque. Then it spreaded to one small nodule into the left side and one into the right. For unknown reason it spreaded first on the right side and scarred it completely from top to bottom WITHOUT any pain in just about 6 months (I think I took soya isoflavone in that time, possible estrogen link?). Then years of no progression of the left side, left side was still ok and good filled with blood. But recently, the left side got worse and it gets the same appearance like my right side, I loose girth and some length again. When I test my shaft with my finger I feel that the whole tunica tissue is more thick than before and rougher (I guess many small plaque points). My problem is that I still can get strong errections sometimes when I'm good stimulated and I guess that makes my situation worse. I take big care to not overpump when doing VED excercises but I have in no way control about the natural pressure in the penis when it comes to sex. I can nearly count the days after I did sex when the pain will start again. My theory is that while having a natural errection more blood leaks into the tunica with all the bad inflammation stuff it brings.

I will target my testosterone levels in my daily regime. My doc subscribed me Testogel but I don't want to apply external Testosterone yet. I ordered "6 OXO" instead. This does also eliminate estrogen in the blood (which I have too much too) and raises Testosterone by up to 188%. This will be my first try. Everybody with low testosterone should definitely do something against it. No nocturnal errections make things worse too imo and there are reports that low testos is really bad in the long term for overall health (see here http://men.webmd.com/news/20071127/low-testosterone-early-death or here http://abcnews.go.com/Health/ActiveAging/Story?id=3247773&page=1)

[jmaxx]

"I'll bet you that within a month I will be taking Pirfenidone prescribed by Dr. Levine.  I will not take no for a answer!  I will not sit by quietly"

I went  back and read my second to last post that I made here five months ago.  The above quote I pulled out of my post.  I was a little over ambitious.  What I said would take me "one month" actually took me five months.  And no I am not involved in the government trials for pirfenidone.  Although my trip to N.Y. for the pirfenidone trials was not entirely unsuccessful.  I had made a contact from the trials and I used that contact later on.  And while in N.Y. I also got to participate in the hMaxi-K Gene trials at the second highest dosage given to participants.  My fiance did not accompany me to N.Y. So how did I participate in the trial when a mans six month or longer sex partner has to be present to answer questions in order to participate?  I have to bite my tongue here, I don't want to say to much.   But damn I made it happen.      

I remember when I was in my twenties and I use to go out with my buddies to a dance club.  And I would go home with a girl and they didn't.   My buddies asked me how did I get so lucky.  I would tell them, "You got to make it happen man.  Nothings going to happen if you don't make it happen."

So don't waist your time with an ionto machine like Dr. tim did.  Don't waist your time following george999 and his rotation of supplements that he swears by one month and discontinues the next month.

I have helped pave the way for you guys.  Because of my efforts I have heightened the awareness of those involved with fibrosis treatments that are also applicable to peyronies.  I've already made it happen for me so I no longer need this forum.   I don't feel sorry for leaving you guys here because I've already helped you.  Now (You) have got to go make it happen for yourselves.  

[Tim468]

What a [deleted].

Learn how to spell. You post [deleted] gathered from some web site and brag of improvement.  [deleted]

I sincerely hope that you mean it when you state that you no longer need this forum.

{You know, it does feel better to delete the ad hominem attacks!}

[jmaxx]

Dear tim468,

Your disagreeable countenance and ad hominem attacks are uncommonly petty.  

"When the debate is lost, slander becomes the tool of the loser."   Socrates

"Be the change you want to see in the world" - Gandhi

[Iceman]

jxyz - whats perfenidone??? - what are you actually taking - please answer....

[gerMike]

jxyz,

are you suddenly healed from peyronies or did the pain and inflammation just stop? Is your penis relaxed again instead contracted all the time?

Please help out with your new knowledge according to your earlier words:

Because of the incredible suffering I am going through I have learned to become a kinder more compassionate person.  The Greek author  Aeschylus, one of my favorintes, wrote of the struggle to reconcile the existence of God in a world filled with suffering.  I believe in making this world a kinder gentler world as the greeks wrote of.  But I have never believed in a god.

You know what a hell this disease is, so please share some information what really helped you and how.

[Old Man]

jxyz:

Petty, petty!!! Instead of spouting off a bunch of jargon that most on this forum won't understand, post something worth while and share what you know. This forum is about helping others with any knowledge that is available to anyone. Telling Tim off will do you no good, believe me because he is just light years ahead of your seemingly low knowledge of Peyronies Disease. In fact telling any of us off will do you no good, so cool it.

Many of us on here have been through more of life than you and have experience way above your head. The disease has been around for several hundreds of years and a lot of great doctors have tried to find something that helps, but so far the solution has eluded them.

I just don't think that you have found the "miracle cure" overnight. If you have, why are you so reluctant to post your formula for all to read and get some help. Why be so selfish and inconsiderate of your fellow man???

If you mean what you say about not needing this forum, why don't you take a cue from the cowboys and "ride off into the sunset"?

At my age, I don't need to listen to such trivial statements from someone apparently much younger than myself.

Old Man

PS: In case you have not noticed, Tim is a Global Moderator of this forum.

[Angus]

jxyz, I don't know what set you off, but since you seem to be quote driven...

"Every man is a damn fool for at least five minutes every day; wisdom consists in not exceeding the limit."

Elbert Hubbard

[George999]

jxyz - whats perfenidone??? - what are you actually taking - please answer....

Perfenidone is a "better" Pentoxifylline if you will.  It is targeted at the same conditions and seems to have a similar, but more powerful, effect.  It is still experimental.  It is in trials now for Idiopathic Pulmonary Fibrosis and is not yet approved.  Right now they are offering it for compassionate use to IPF sufferers who will die without it.  Peyronies is not a deadly disease and those of us with Peyronies can well afford to wait until it is approved by the FDA within the next few years.  Aside from that, its long term side effects are still not completely understood.  AND, it is extremely expensive even if it can be procured.  If jxyz can get it, bully for him.  Personally, I will pass on these kinds of things until we know more about them.  Most of us around here have made our share of mistakes, many of them rather publicly, and are more than willing to own up to them.  But jxyz seems to have all the answers and seems determined to try to make everyone dance to his tune.  Hopefully what ever he is "on" to will be helpful to him, but it often doesn't work out that way with arrogant, self centered people.  Usually they get so tangled in their own hubris and pride that they collapse into a pile of dung in fairly short order.  But we will see how things turn out with this.  - George

[Tim468]

This supposed Socrates quote was never uttered by him. The real Gandhi quote is "You must be the change you want to see in the world."

A better quote (for you) would be "The only true wisdom is in knowing you know nothing."

That was by Socrates, by the way.

I suspect that poor self esteem, masked by bravado and braggadocio, underlies this behavior. Perhaps his father never told him he was proud of him. I don't know.

And cured as he is, I suppose he will soon be leaving. But as for dialog, I have a three strikes rule. If someone persistently flames others (or me), or cannot make a point, or cannot get a point, then I give up on him after three tries at communication.

For this knucklehead, I am calling three strikes now.

Tim

[ocelot556]

Congratulations, jxyz. I'm surprised you aren't fully cured already! I'm surprised the cure didn't add 6 inches onto your penis! I mean, you proved your proactiveness by telling us how easy it's always been for you to pick up ladies when your friends struck out at the bar. I'm sure they were perfect 10's, too!

I know a friend who goes out with us and always has a STORY to tell about the girls he's "conquered" -- but he always manages to meet them when we've left the club early or when his buddies are otherwise not around to witness it. Funny - that sounds a lot like your peyronie's cure. By that I mean a complete and arrogant lie.

Listen, chump. You don't impress anyone here. If you have something real to say, be a MAN and say it, since you want to run around telling us how manly you are. If you're a liar there's no helping you, but if there is an actual answer - and you don't contribute to the community you came crying to (and was there to support you) when you got Peyronies Disease - then you're a coward.

[jmaxx]

I'm feeling much better.  I don't know if the treatment I sought out is what worked for me or, like I said, when i was in my 20's I developed p.d. but it went away and stayed away for twenty two years.  Now it is going away again.   So strange how this snuck up on me so fast and now it has been healing so fast.    

I realize I don't need this community any longer.  I realize that there are mostly sad men lurking here and know one who goes out in the real world where the treatments are.  Lots of bi+
I am healing because I took the innitiative and you bi+
Big reminder to you p.d. patients s out there.  1) Don't be a lurker and suffer in silence.  2) when you read a report about fibrosis on-line Email the doctor and clinic involved in the research.  3) mail call and visit the names of the doctors and clinics you read about on-line.  

I have laid out a good path for you.  Now get the hell out there and stop lurking baby!  

[Angus]

Bye bye.  

[nemo]

Dude, you're weird.  You have this irrational complex that everyone here is a "lurker," unwilling to get off their butts and get out in the real world to find treatment.  There are people here who have flown to Chicago to visit Dr. Levine (I've had a phone consult with him, myself), flown to San Fran to see Dr. Lieu (one guy flew from Australia), and guys who have used VEDs, Ionto, heat therapy, traction, Thacker's Formula, witch doctors, faith healers and a couple treatments involving the ear wax of vestile virgins.  Don't say these guys are lurkers - they're grasping for straws on a disease that's perplexed medical science for centuries.  

You're either a BS artist with nothing better to do than spend time trolling forums for excitement ... or someone who actually got some results but is too cruel to share them.  I'm not sure which is worse, but I'm not gonna waste any more time thinking about it.  The two minutes it took me to type this is more attention than a blow hard like you deserves of my life.  

I mainly just wanted an opportunity to call you a blow hard.

Nemo

[George999]

Basically, he thinks that by being abusive and vocal he can get the attention he craves.  But he is not satisfied with that, he wants all of us to be abusive and vocal as well so that he can get even more attention.  The problem is, we already have some very capable leadership around here in the form of forum moderators that have a proven approach to leading this community.  Few, if any, of us are attracted to his trash and burn, hyper-activist approach.  This is causing him to be irritated and so he just has to throw in a few more disparaging comments.  Some of his comments make me wonder whether he even has Peyronies Disease, or whether it is just a figment of his imagination.  In any case, if nobody around here takes him seriously, I can't imagine a doc or researcher taking him seriously.  I could imagine him demanding Perfenidone and ending up with a completely different med that more appropriately addresses his problem and being told by the doc that it is Perfenidone.  But who cares?  He has certainly more than burned his bridges around here.  Hopefully he will own up to the fact that he has a problem with something other than his Penis and get some help for it.  - George

[Iceman]

jxyz - if i am a lurker  then why did i fly across the pacific spend 1 week in san fran for a 30 min appointment with dr lue???

[Hawk]

Basically, he thinks that by being abusive and vocal he can get the attention he craves.  But he is not satisfied with that, he wants all of us to be abusive and vocal as well so that he can get even more attention...

George is dead on.  We have had a rash of bizarre posts in the last week.  Actually it has been two posters which is a rash for us.  We have a rule of no personal attacks.  In a nutshell, that is mostly any name calling.  We can aggressively question or confront data and ideas here.  We discuss controversial issues with full freedom.  We can call an idea stupid if we are at a loss for words, but we do not call people stupid or any generally derogatory names.  For one thing, we never know who may be a psychologically troubled person who is or should be a mental patient.  We have no desire to taunt such a person.  In addition, we don't want to give license to members coming back to respond to our responses.  That destroys the forum we have built.  

As moderators and Administrators we do not run this forum like some.  We do not use privilege to attack members then ban them when they step up the attacks.  We are bound by the same rules as others.

When I see some irrational post and one of our solid members respond with a good tongue lashing, I often share those same sentiments.  The forum is not the place to express that however.  I am not into the concept of favoring some members over others when it comes to enforcing our rules.  I cannot give privilege to those I happen to agree with.

In short: No personal attacks, even in response to such attacks.  We send a Personal Message to all such abusers and warn them.  Our patience is very limited and we deal with those that do not head our warnings.

Feel free to aggressively address the issues of any post just refrain from personal attacks.

Regards,

Hawk

Administrator

[nemo]

Well said, Hawk.  I apologize for name calling.  My goat was got, albeit briefly, and I just felt like calling a spade a spade.  But this forum is very well run and inhabited almost exclusivley by gentlemen, so again, I apologize for the childishness.  

Nemo  

[tinaa]

Dear Hawk

I do appreciate you all for being such a wise and great group of people.

Very true we don't know what's going on with this guy. and we shouldn't follow his steps .again we don't know who is he.

GOD BLESS YOU ALL

 

[hornman]

This is indeed a strange disease.  Last week I was almost ready to post that my disease was close to being cured.  Things felt good down there and the plaque seemed much less.  Now over night the plaque has come back with a vengence and my penise is taking on that hard dead feeling I have heard many of you speak of.  Oh well.

[despise]

Ok well I didn't know where to post this so this seems about right. Do anyone of you think masterbation is bad for your peyronies disease? Everytime I masterbate which was only once in the past 3 weeks because of pain I noticed it got worse. Do any of you have this same problem? I know a lot of you in here say you can't get peyronies disease from masterbation but I am 100% positive I got my disease from unhealthy masterbation. In other words I got it from injury. I am having so many issues that I am starting to think I have something else other then peyronies disease. Maybe a urethral stricture I have no idea. I am seeing my uro today at 4 30 wish me luck!

[Hawk]

Despise,

Injury can trigger Peyronies Disease but for true Peyronies Disease progression there are likely many factors that have to be present.

An injury from any source can be the trigger, so abnormal masturbation could trigger Peyronies Disease.   I guess it is like bungee jumping.  Normal bungee jumping is not associated with Peyronies Disease but penis bungee jumping probably could be.  

[didi20031]

hornman
sorry to read that!   I hope your new problems will go away as quick as they came! You have already experienced improvement once so obviously your body is able to fight against this mess! Don't give up!!! I wish you all the best!!!

[didi20031]

despise
I am in a similar situation. Sometimes I have the feeling that masturbation helps and sometimes it seems to worsen things. I think you should "listen" to what your body "tells" you. If you have the impression that masturbation is not good for you at the moment stop it for a week or two. Then try again. I have had peyronies for five months now and there were periods when my penis was sore for two or three days after masturbation even after longer breaks of 1-2 weeks. Now things are much better. I can masturbate 2-3 times a week without having problems and I have the impression that the situation is still improving.   I hope I am right!!!
good luck!

[despise]

Yeah your right! What I failed to do was stop the masterbation in time for my penis to recover. Obviously I was having a lot of phychological issues. Did I spell that right? haha. I really can get mad at myself sometimes and I think that had a huge part in it. Masterbating to the point where it can't recover was a very unfortunate thing to go through! Now I am simply paying the price. At lease I have learned my lesson and now am ready to move on. Ok well I have been kinda freaking out laying on my bed cause my penis is always stuck down on my testicles. This is what leads me to believe I might have something wrong with my urethra. It seems as if my urethra is like broken! No strength what so ever. I am young and still have some wet dreams but they are very unpleasent now. I felt pain in my urethra and somewhere near my bladder. Maybe far up the urethra? This happened this morning and woke me up. I have also been taking hot baths to try to relax which is actually doing the oposite =(. In the hot water my penis feels broken and curls up to the left. Has anyone with downward and left curvature experienced these things? I really really think something is wrong with my urethra too and I think my urologist doesn't think so because im only 17 and its probably very rare. He told my father doing the test where they stick a little microscope up your urethra might cause more damage. So he scheduled the next appointment for 2 months! I need help guys! Do you think I just have peyronies disease? Or do you also think there is a huge possibility I have a urethral stricture or something else? I noticed that one time I masterbated the past 3 weeks that I couldn't last a healthy errection without climaxing. Basically right when I gain a full erection im ready to ejaculate. Anyone have these issues with peyronies disease? Sorry for all the questions guys im just freaking out! Thank you.

[LWillisjr]

Despise,
I've been on vacation a week so just now catching up on posts on this forum. I went back and read all your posts. I read where the USC uro diagnosed or thinks you have Peyronies. From your posts I'm really wondering if you have different problems. Your description of masterbating 5 times one day and something happening (your reference to a ruptured blood vessel) leads me to believe that maybe you caused some physical damage. I guess I'm just trying to point out that you might have other issues (Peronnies or not). Could be a ruptured tunica, damaged cavernosa, etc. Also your symptoms of difficulty and pain while urinating are important. These aren't directly associated with Peyronies either.

If I were you I would push your uro to get a penile ultrasound to see if there is proper blood flow or other damage. I believe there is also a test for Prostatitis (sp?). Taking Payronies drugs won't help if you have something else going on.

I would really be interested in Tim's or Old Man's thoughts on this one.

Les

[despise]

Thank you so much!!! Oh my god someone that thinks I have something other then peyronies like me!! Ok I have to wait 2 months damnit!!!! What would you do if you were me? I need to do something because I am so beyond depressed and stressed out. Seriously I can't take this anymore I need some help. I think I will talk to healthy kids and push for another urologist.

[Tim468]

Some of the symptoms suggest prostatitis or epididimytis - but neither of those are incompatible with having Peyronie's Disease too.

Burning sensations with urination mandate evaluation, and sooner than in three months.

Tim

[LWillisjr]

Tim,

Epididimytis or prostatitis would be a coincidence, correct?  I don't think either of these are directly linked with Peyronies.

[Old Man]

lwillisjr:

Neither of those ailments relate to Peyronies Disease. However, severe Peyronies Disease could aggravate them. The added pressure of the curve on the urethra and corporal chambers could possible cause a pull on the testicles or the bladder.

I had an epididymis infection that resulted in its removal on one of my testicles. After the surgery, the pain of the gland and some of the pain of Peyronies Disease left.

As I said, there is not a direct link as far as I know between those ailments and Peyronies Disease.

Old Man

[George999]

Guys, he has already had his urine checked at least once I believe and they didn't find anything.  But, of course, those urine tests for infections are notoriously vague.  A subliminal infection can easily escape detection.  As for a prostate infection, it sure doesn't sound like that to me, but who knows.

My suspicion is that it is just another aspect of systemic inflammation.  That is the Peyronies connection.  If your tunica is inflamed for no good reason, who knows what else might be inflamed for the same no good reason.  I had burning issues for years, from long before I had the Peyronies, and the uros couldn't find any evidence of infection.  Of course, I had a stricture.  They gave me antibiotics anyway until I got allergic to them.  After the stricture got fixed permanently, I still had burning.  I just knew what it was and got urine tests periodically and put up with it.  I never really knew whether I had an infection or not.  The thing that eventually helped me a whole lot and even knocked out the infections was the cranberry extract, garlic, vitamin c and forskolin combination.  But now that I am on the vitamin d / pentox combination, the burning is gone, really gone for the first time in memory (at age 61).  My point is that this whole systemic inflammation syndrome can cause crazy things.  And as Old Man points out, localized infection somewhere else can either reflect or actually inflame adjacent tissues.  So sure, rule out as much other stuff as possible, but as far as using a scope on him, he had better have a good uro handle that because it is not without risks.  I am also not sure what the potential benefit would be when his urine flow seems to be ok.  Those are my thoughts.  But I would sure attack the inflammation and try to find a doc to get the vitamin d issue investigated.  - George

[Tim468]

infections are not causative for Peyronies disease to my knowlege.

Tim

[George999]

Tim,  I would certainly agree that infections do not cause Peyronies.  That was not what I was intending to say.  Sorry if I gave that impression.  I also do not believe that Peyronies can cause infections.  But I do believe that infections can elevate the level of systemic inflammation and thus aggravate Peyronies, and that Peyronies itself can elevate systemic inflammation which would not in and of itself increase the risk for infections.  - George

[despise]

I appreciate everyones concern and help!   Ok im not sure what it is yet. We are trying to push my urologist to give the test where they put the camera up your urethra. I have had 2 urine samples and they said no infections. One major reason why I think I have this is because of my wet dreams. Before about 2 to 3 years ago I had a wet dream. It was so realistic it lasted 5 mins on some girl giving me oral and then I climaxed. Last night I was half asleep and I thought of this girl I like. I got a errection and I climaxed just like that. It was painful in the penis somewhat but also deep down. Does anyone know if this is a urethral stricture symptom? I have had one a couple of night before that one too and it was unpleasent as well very painful deep down not in the penis maybe far down the urethra? I haven't gotten a regular errection in 4 weeks. I was with my ex girlfriend. We started kissing and my errection was pitiful. This is way unormal for a 17 year old male! Ive had to many of these painful wet dreams and its simply driving me nuts. I know im not ready for sexual activity. I have had to many chances to have a beautiful girlfriend this year but this is ruining it! I met a girl and I told her I am a virgin which is true. I told her my problem and she was fine with it. What I didn't tell her is that I masterbated so much and caused this! Or that my skin is so badly scarred and stretched. Theres no way I can have a relationship with her. I need to solve this problem and I am done being sorry for myself. I am ready to try everything I can possibly do to be happy. I have been thinking about the future. I have been a low life all my life doing nothing for my future. Now that I know how bad this is I might want to become a urologist! I think I would be a very good one due to my young age and rareness of my case. Is there anyone that can help me pick out these problems? Do you guys believe this is a urethral stricture? Is there a site where people could help diagnose my problem by me giving them good detail? If I can help at anyone please let me know.