GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[hes475]

My husband has had this condition for over a year..His Penis looked like a fish hook.. We bought a Vacuumed  tube pump with gage , that claims to enlarge the penis.. Only after 2 week, he has just about lost the hook.. And has regained about 1/3 of his girth and length back.. Were really excited about this.. Best 100 dollars we ever spent..

[Tim468]

The first article out of Gonzalez-Cadavid's lab in LA is the most interesting to me. The other is bogus retrspective data mining on radiologic therapy.

Tim

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Cantini LP.  Ferrini MG.  Vernet D.  Magee TR.  Qian A.  Gelfand RA.  Rajfer J.  Gonzalez-Cadavid NF.

Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Urology Research Laboratory, Los Angeles, CA, USA.

Profibrotic role of myostatin in Peyronie's disease.

Journal of Sexual Medicine.  5(7):1607-22, 2008 Jul.

INTRODUCTION: The primary histologic finding in many urologic disorders, including Peyronie's disease (Peyronies Disease), is fibrosis, mainly mediated by the transforming growth factor beta1 (TGFbeta1). AIM: To determine whether another member of the TGFbeta family, myostatin, (i) is expressed in the human Peyronies Disease plaque and normal tunica albuginea (TA), their cell cultures, and the TGFbeta1-induced Peyronies Disease lesion in the rat model; (ii) is responsible for myofibroblast generation, collagen deposition, and plaque formation; and (iii) mediates the profibrotic effects of TGFbeta1 in Peyronies Disease.
METHODS: Human TA and Peyronies Disease tissue sections, and cell cultures from both tissues incubated with myostatin and TGFbeta1 were subjected to immunocytochemistry for myostatin and alpha-smooth muscle actin (ASMA). The cells were assayed by western blot, Real time-Polymerase chain reaction (RT-PCR), and ribonuclease protection. Myostatin cDNA and shRNA were injected, with or without TGFbeta1, in the rat penile TA, and plaque size was estimated by Masson.
MAIN OUTCOME MEASURES: Myostatin expression in the human TA, the Peyronies Disease plaque, and their cell cultures,  and myostatin effects on the Peyronies Disease-like plaque in the rat.
RESULTS: A threefold overexpression of myostatin was found in the Peyronies Disease plaque as compared with the TA. In Peyronies Disease cells, myostatin expression was mainly in the myofibroblasts, and in the TA cells, it increased upon passage paralleling myofibroblast differentiation and was up-regulated by TGFbeta1. Myostatin or its cDNA construct increased the myofibroblast number and collagen in TA cells. Myostatin was detected in the TGFbeta1-induced Peyronies Disease-like plaque of the rat partly in the myofibroblasts, and in the TA. Myostatin cDNA injected in the TA induced a plaque and intensified the TGFbeta1 lesion, which was not reduced by myostatin shRNA.
CONCLUSIONS: Myostatin is overexpressed in the Peyronies Disease plaque, partly because of myofibroblast generation. Although myostatin induces a plaque in the rat TA, it does not appear to mediate the one triggered by TGFbeta1, thus suggesting that both proteins act concurrently and that therapy should target their common downstream effectors.


Musitelli S.  Bossi M.  Jallous H.

University of Pavia-Andrology and Sexology, School of Urology, Pavia, Italy. sergiomusitelli@libero.it

A brief historical survey of "Peyronie's disease".

Journal of Sexual Medicine.  5(7):1737-46, 2008 Jul.

INTRODUCTION: Historians of medicine and urology, sexology, and andrology in particular maintain that many other physicians, surgeons, anatomists, and pathologists have already described "Peyronie's disease" some centuries before the author after whom it has been called, Francois Gigot de La Peyronie (1678-1747).
AIM: To perform a brief historical survey of Peyronie's disease.
Methods. A  literature review was performed.
RESULTS: The main surgeons and anatomists who previously observed and described penile curvature prior to Francois Gigot de La Peyronie are Theodoricus Borgognoni (1205-1298), Guilielmus of Saliceto (circa 1210-1276), Gabriele Falloppio (or Falloppia) (1523-1562), Andreas Vesalius (1514-1564), Giulio Cesare Aranzi (or Aranzio) (1530-1589), Claas Pieterzoon Tulp (Nicholaus Tulpius) (1593-1674), and Anton Frederik Ruysch (1638-1731), who was said to have left the first "postmortem"  illustration of the disease in a copperplate engraving in 1691.
CONCLUSION: The original texts could easily prove that none of the alleged "precursors" of La Peyronie did ever describe, treat, and cure real cases of Peyronie's disease, and that to award them this merit was somewhat far-fetched, with only Guilielmus of Saliceto and Falloppio possibly excepted.


Incrocci L.  Hop WC.  Seegenschmiedt HM.

Department of Radiation Oncology, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands. L.Incrocci@erasmusmc.nl

Radiotherapy for Peyronie's Disease: a European survey.

Acta Oncologica.  47(6):1110-2, 2008.
BACKGROUND AND PURPOSE: Peyronie's Disease (Peyronies Disease) is a benign condition characterized by penile nodules, pain and curvature. Radiotherapy has been used for many years with positive outcomes, however all studies published were non-randomized or non-controlled. The purpose of this survey was to understand which treatment policy is followed in Europe before setting up a randomized trial.
MATERIALS AND METHODS: A questionnaire was sent out to 908 European radiotherapy institutions, 402 questionnaires were sent back and filled out correctly (44.5%). The questionnaire consisted of different items, regarding number of patients referred, fraction dose, total dose and technique used, and eventually treatment outcome of clinical trials.
RESULTS: Seventy-three institutions irradiate Peyronies Disease (19%), 304 do not (81%). Reasons for not treating were
insufficient referrals from urologists or no interest in treating benign diseases. The most common fraction dose is 2 (range 0.5-8) Gy and the total radiation dose 20 (range 3-30) Gy. Most of the institutions use electrons (n = 44) or orthovoltage (n = 32). Decreased pain is reported in about 80% of the cases, and side effects by eight institutions.
CONCLUSIONS: So far, a large variation of treatment schedules for radiotherapy of Peyronies Disease has been detected in European countries. Although the results are good and side effects minimal, there is still a need to set up a European randomized trial to prospectively evaluate the efficacy of radiotherapy for Peyronies Disease.

[George999]

Tim,  Of course the number one question here becomes "what exactly is causing this bizarre behavior by TGFbeta1 and myostatin?  And why is healthy tissue being targeted by them?"  And, of course, my answer to that question would be that Vitamin D deficiency would be a prime suspect.  Just look at the numbers.  41 percent of all men are estimated to be below 28ng/ml.  50ng/ml is acknowledged to be the optimal level.  And Vitamin D is the number one mediator of systemic inflammation levels.  It is also the number one mediator of gene expression.  And it is also likely the number one mediator of hormone levels across the board.  This is just a huge, huge smoking gun.  And it fits right in with all the TGF-beta work done by Gonzalez-Cadavid and Lue.  It also fits right in with underlying environment of inflammation, glycation and eventual calcification.  - George

[Fred22]

George, you may have already done this but I can't locate it.  Could provide us with a link to the research which states that Vitamin D helps to combat systemic inflammation.  Also, while you're at it, you mentioned in one of your posts a reknowned physician who had published a paper demonstrating the positive effect of the use of pentoxifylline in the treatment of Peyronies Disease. (Are you referring to Dr. Lue?)  I'd like to show this to my uro who apparently has never heard of pentox and told me that it was not mentioned in any of the literature.  Thanks.

Fred

[Tim468]

Brant WO, Dean RC, Lue TF. Treatment of Peyronie's disease with oral pentoxifylline. Nat Clin Pract Urol 2006;3:111–5.

Send your doc to:

https://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#

This text was written by Tom Lue and is an excellent review of current treatments for Peyronie's Disease and will also discuss (although only briefly) the use of Pentox.

Tim

[George999]

George, you may have already done this but I can't locate it.  Could provide us with a link to the research which states that Vitamin D helps to combat systemic inflammation.

Vitamin D Vital for the Heart

MONDAY, Dec. 1 (HealthDay News) -- A lack of vitamin D, which is absorbed primarily through exposure to sunlight, helps boost the risk of heart attacks and strokes, new research finds. ... "There are a whole array of studies linking increased cardiovascular risk with vitamin D deficiency," noted Dr. James H. O'Keefe, director of preventive cardiology at the Mid America Heart Institute in Kansas City. "It is associated with major risk factors such as high blood pressure, diabetes and stiffening of the left ventricle of the heart and blood vessels. Inflammation is really important for heart disease, and people with vitamin D deficiency have increased inflammation."

Lung airway cells activate vitamin D and increase immune response - 2008-11-15

The team then showed that vitamin D activated by airway cells affects two genes involved in immune defense. One gene expresses a protein called cathelicidin that can kill bacteria. The second gene, called CD14, produces a protein that helps cells recognize different kinds of pathogens that could be a threat.

"Vitamin D converted by the kidneys circulates in the bloodstream, but vitamin D converted by other organs appears to stay within those organs and protect them from infection," Hansdottir said. "We were able to see this happen in cells lining the trachea and main bronchi."

The team also found that when lung airway cells are infected by a virus, they express more of the enzyme that activates vitamin D. Hansdottir said the team is very interested in pursuing studies on the role of viral infections in vitamin D production and subsequent effects on lung infections. "Vitamin D not only increases proteins involved in bacterial killing but also can dampen inflammation," Hansdottir said. "Controlling inflammation through vitamin D is good because too much inflammation can cause problems such as sepsis and seems to contribute to autoimmune disease."

I could site more examples I am sure since they are legion.  But that would take a lot of time and I think these two are good examples.

 Also, while you're at it, you mentioned in one of your posts a reknowned physician who had published a paper demonstrating the positive effect of the use of pentoxifylline in the treatment of Peyronies Disease. (Are you referring to Dr. Lue?)  I'd like to show this to my uro who apparently has never heard of pentox and told me that it was not mentioned in any of the literature.  Thanks.

Fred

I was indeed referring to Dr. Lue.  This is the paper you should offer him.  - George

[Tim468]

http://www.ncbi.nlm.nih.gov/pubmed/18599338?dopt=Abstract

Interesting abstract... "A new mouse model of Peyronie's disease: an increased expression of hypoxia-inducible factor-1 target genes during the development of penile changes."

http://64.233.169.132/search?q=cache:VWGE1Cjs4JUJ:www.bioportfolio.com/indepth/Penile_Induration.pdf+%22The+Safety+and+Effectiveness+of+AA4500+in+Subjects+With+Peyronie%27s+Disease%22+protocol&hl=en&ct=clnk&cd=3&gl=us&client=firefox-a

Website that collates data on Peyronie's - I think for advertisers to target physicians!

From: http://www.bioportfolio.com/indepth/Penile_Induration.html

Tim

[Hawk]

Here is a repost I made of comments by Shalomuk in "Our Histories"  Since that is not an area for two way discussion I reposted it here.  I would like to be the first to welcome you to the forum Salomuk.  I for one am a bit curious as to the certainty of your diagnosis and your degree of curve or bend.

Age - 28
Age at onset of Peyronies Disease= I think I had it all my life not really sure of onset.

I lost my virginity at 27 and the girl broke up with me because of this several times. (Same girl).  I have the "Hour glass" and when my penis is not fully erect it bends too much and when it is fullly erect it may hurt the girl when I have it in.  It was hard to aim for her vagina for one and even when I got it in I think it may have hurt her.  Also when the penis is filling up the rest of the penis is large and hard while the skinny part takes time to fill up.  It almost is as wide in girth as the other parts.

I was just diagnosed today.

I just wish that when i am partially erect (7 1/2 inches) that the "hour glass" portion will fill up faster. If it was straighter (30-40 degree curvature) it would be easier to maneuver during sex but the most frustrating factor is that it does not harden all the way easily.  I am thinking I will try to minimize sleeping on my belly and prevent trauma. (not sure if that will help).  I will also try to stop masturbating.   I am not sure if that is what caused it.

I really don't know what to do.  I am not a sex maniac but I realize that sex will be important for me to have a healthy relationship in the future.

I will be a pharmacist in a couple of years.

[Shalomuk]

Maybe the diagnosis is not certain because the doctor did not even look at it when it was erect or attempting to erect.
Am I to take pictures of it and post?

From flaccid to erect.

1)Penis Engorges with blood
2)Everything in penis engorges except for a small section.  At this time it looks like an hour glass.
3)The hour glass slowly fills in
4)Penis is fully engorged and is as hard as a rock but shaped like a banana.  the penis does aim almost 45 degrees from shaft but it is a smooth curvature and in one section there is more of a curve.
5)Feels pain inside the urethra after ejaculation.  Possible to sperm eating the tissue inside?

edit.  The reason I went to the doctor to begin with was because I thought I had a yeast infection in my penis... it kinda burns at tip and burns inside the urethra.
edit2.  Have anybody with this disease had yeast infections in penis? I was just wondering if it was a possibility.

Here is a repost I made of comments by Shalomuk in "Our Histories"  Since that is not an area for two way discussion I reposted it here.  I would like to be the first to welcome you to the forum Salomuk.  I for one am a bit curious as to the certainty of your diagnosis and your degree of curve or bend.

Age - 28
Age at onset of Peyronies Disease= I think I had it all my life not really sure of onset.

I lost my virginity at 27 and the girl broke up with me because of this several times. (Same girl).  I have the "Hour glass" and when my penis is not fully erect it bends too much and when it is fullly erect it may hurt the girl when I have it in.  It was hard to aim for her vagina for one and even when I got it in I think it may have hurt her.  Also when the penis is filling up the rest of the penis is large and hard while the skinny part takes time to fill up.  It almost is as wide in girth as the other parts.

I was just diagnosed today.

I just wish that when i am partially erect (7 1/2 inches) that the "hour glass" portion will fill up faster. If it was straighter (30-40 degree curvature) it would be easier to maneuver during sex but the most frustrating factor is that it does not harden all the way easily.  I am thinking I will try to minimize sleeping on my belly and prevent trauma. (not sure if that will help).  I will also try to stop masturbating.   I am not sure if that is what caused it.

I really don't know what to do.  I am not a sex maniac but I realize that sex will be important for me to have a healthy relationship in the future.

I will be a pharmacist in a couple of years.

[George999]

Welcome! Shalomuk!

1)  The hour glass thing does not sound like Peyronies to me because it corrects with the erection.  This type of thing is quite common.  If the hourglass is still present when completely erect, that would indicate Peyronies.

2)  The banana issue may indicate Peyronies.

3)  The fact the doctor told you that you have Peyronies is usually a very strong indicator that you have Peyronies.

4)  The burning pain you are feeling in the urethra after ejaculation is probably NOT directly related to Peyronies.

Questions:

Was the doctor who told diagnosed you a urologist or a general practice doctor?

If the doctor who diagnosed you was a general practice doctor, did they refer you to a urologist for follow up?

What country are you located in?

As for posting pictures, I don't think that would be appropriate as we are not doctors, but just patients like you.  BUT, If you are going to see a urologist for followup, DO take with you pictures, they are often helpful to the urologist.

Again welcome to the forum!  - George

[Shalomuk]

Hey George999


1)  The hour glass is present unless the erection is very hard almost as hard as a rock.  There was a girl trying to ride when it was 1/2 erect and of course that didn't work out.

2)  The banana issue may indicate Peyronies. Yeah it looks like it may be. I remember it being banana like when I had my first erection as a 12 year old or something like that.  It would curve up and I had to pee really bad and could barely aim enough to hit the bathtub.  I am  not sure what this is indicative of.  However the penis part next to the trunk I am pretty sure was stiff.  it kinda became more flexible as time goes on but not really painful there.  I am wondering if me wearing tight pants for many years with a erection and walking around made it deform somehow.

3)  The fact the doctor told you that you have Peyronies is usually a very strong indicator that you have Peyronies.  He did not actually look at it himself.  He gave me viagra last but not sure if i needed it.  I just needed to understand what what going on.  She was my first gf and it litterally caused her to leave me.

4)  The burning pain you are feeling in the urethra after ejaculation is probably NOT directly related to Peyronies.  I think it is some kind of infection but I guess yeast infection was ruled out this morning.  The doctor insists it is not an infection.. In any event I will try to stop masturbating and see if it improves.

Questions:

Was the doctor who told diagnosed you a urologist or a general practice doctor?  He was a general practice doctor at a university.  He seemed to be very embarrased about this issus.

If the doctor who diagnosed you was a general practice doctor, did they refer you to a urologist for follow up?  No; He ony printed something out from wikipedia from me and made sure that I knew what the name of the disease was.

What country are you located in? USA; Texas

As for posting pictures, I don't think that would be appropriate as we are not doctors, but just patients like you.  BUT, If you are going to see a urologist for followup, DO take with you pictures, they are often helpful to the urologist.  
Thanks for that tip

[LWillisjr]

Shalomuk,

Recommendation:  Get to a sexual specialists or uorlogist who specializes in Peyronies.

As far as the curve you described, it sounds like it could be congenital. Do some research on congenital curvatures.

It doesn't sound to me like you have been properly diagnosed. Too many times people seem to default to I have Peyronies" when in fact it could could be a nubmer of other posible diagnosis. The key is PROPERLY getting a daignosis, not guessing, and not assuming. Proper diagnosis....   proper treatment.

[jedwards]

Hawk,

Why does pdpunk.com not like you?

are you really what they say you are?

[newguy]

I don't really think that a personal attack from a blog with three posts, none of which are actually at all helpful, is really much to worry about. An unusual first post. It seems at least somewhat likely that you set the website up yourself and came here to alert us of it, which is quite sad. This site is a valuable resource and a place for people to go to discuss their concerns. If that makes its members fair game for random attacks, then its a sad state of affairs.

[souldigger]

I am not going to post my history on the history thread at this time. Too stressed and not clear enough about what all I want to say.  I've read a lot on this very helpful forum but have not seen answers to my specific questions, so am posting them here, hoping that it is ok.

My peyronies started about 3 months ago or so. I'm 18 months post prostate surgery and struggling with ED. Since my recent diagnosis of peyronies one week ago, I have stopped all activity down there.  And I am concerned that I seem to be shrinking a lot. Prior to the diagnosis, my ED specialist recommended multiple times per week to use my vacuum pump, cialis, or trimix injections and either touch myself or have relations with my wife. Since the surgery and ED I haven't been successful at intercourse without use of the pump and a ring. Now my Uro who diagnosed the peyronies says no more rings or trimix injections. I have an appointment scheduled in 3 weeks with the local specialist but in the meantime I wonder, is it harmful to use a pump and ring maybe once a week for relations with my wife? Will it make things worse?

I'm working on following the meds, and vitamin e, L-carnatine, and Aleve per my Uro, but am not pumping or getting any blood flow. I am worried that, whatever I do, I'll be doing the wrong thing and making things worse. Should I pump? How often? Should I use the hypertherapy? How often? Should I be masturbating? Should I avoid everything until after I see the specialist?  My peyronies seems to get worse by the week. I'm depressed about this and almost feel like giving up this aspect of my life.

Please share any "do's" and "don'ts" with this newbie. I'll be sitting here waiting to see some answers on the board.  Any advice is welcome and much needed!

[Old Man]

saouldigger:

Welcome to forum! First, I will state that I am not a doctor or uro and that my comments are strictly what I have experienced since my radical prostatectomy in April 1995.

I categorically disagree with your uro's statements that you should not have sexual relations, should not use the VED and/or restrictor rings for sex, and not to use the VED at all. Your penis needs to continue to have good blood flow in order to remain healthy. Unless there are some circumstances that you did not relate in your post, I personally see no reason why you should stop all sexual activity due to you being diagnosed with Peyronies Disease. Continued sexual activity has proven to help with Peyronies Disease in a lot of cases, including mine. I have used three different models of VEDs in the past 13 plus years for Peyronies Disease therapy and for sexual activity and have never had any problem or bad experiences with its use.

You should read up on the VED usage and other treatments/therapy that members on this forum are doing. There are many posts relating to positive results from many and varied things the guys are doing.

In my case, the VED has proven to be the best therapy that worked when all others failed. The penile injections for sex (Trimix and prostaglandin shots) only gave me more nodules and plaque. The VED was prescribed and I put it into use immediately and positive results were realized in about 6 months of daily VED usage. Treatment of Peyronies Disease is not an overnight thing and one must follow a strict regimen of whatever he chooses to "treat" his Peyronies Disease.

This forum has many topics and threads that contain a vast amount of information that you should consider. Just check out any and of them so that you can quickly become well informed about Peyronies Disease, what can and cannot be done to help.

Again, welcome to the forum. Feel free to ask any and all questions that come to mind. You will receive answers or information where you can get answers.

Old Man

[Hawk]

Hawk,

Why does pdpunk.com not like you?  are you really what they say you are?

Jedwards,

Welcome to the forum.  I could not tell if that was a real question or rhetorical humor, but since I try to frankly respond to all questions, here is my honest, direct answer.

I do not know pdpunk and whoever he is, he does not know me.  He has never tried to contact me or have dialog with me in private or on the open forum.  That in itself is pretty weird for a kid with strong opinions or issues since I am pretty accessible. I glanced at his site once right after it went up.  Considering the factual errors and vague limited scope of the site I forgot it existed.

That is about all I can tell you, just another guy on the internet, and who knows what makes him tick.  He could be a nut job or a decent guy troubled by his frustrations over Peyronies Disease.  In any case I wish him well.

As far as, is what he says about me true, I seriously don't know what he says about me so I cannot answer.  

[Tim468]

SoulDigger,

Gentle use of the VED without a constrictor ring and without sex - on a daily basis - would be a gentle and healthy thing to do to maintain blood flow and stretch to the tunica. Many of us (me included) have had progression during a period of sexual inactivity (or more specifically for me, a period of few erections and no VED).

Old Man's advice is good, and starting on the Child Boards is a good way to get up to speed on what those who post here think. Our goal is to share information about what has helped each of us individually. You are on the right rtack by getting an expert's help. Good luck.

Tim

[George999]

Hawk,  Whoever it is who is posting as pdpunk.com, anonymously of course, is complaining about the fact that you banished the APDA link to outer darkness because "The APDA, a 501c3, has chosen not to engage in a link exchange with PDS because of the level of disdain and mistrust it has for the medical community, among other things."  So isn't this totally weird.  Here is a guy who advises people on his site to see a doctor who will prescribe Pentox (if you can find one!), something we having been doing for a long time around here, yet he complains that we "disdain and mistrust doctors", when the very thing we critique them on is stuff like refusing to prescribe Pentox!  I dare say a fair number of docs who belong to the APDA will not prescribe Pentox to their patients.

APDA has no obligation to link to us and we have no obligation to link to them.  APDA has a good and useful work and I wish them and their physician members nothing but the best.  On the other hand, our site represents the interests of the patients.  And sometimes the interests of the patients are not necessarily in line with the interests of the physicians.  I find it interesting that pdpunk is also spamming the APDA's forum.  He is complaining on that forum that nobody is responding to his site. (I wonder why   )  He has also claimed in the past that he is attempting to "unify" the peyronies community.    Hopefully someone from the APDA will visit his site and realize that he is making them look foolish in his attempt to put down our site.  He seems like an old poster on the APDA forum who knows you (Hawk) from that forum somehow.

I also find it interesting that he picks on Tim because he has identified himself as a doctor.  Tim has repeatedly stated that he is posting on this site as a patient.  But I guess in pdpunk's world, we all "hate" doctors so much that we should not allow a known doctor to post on our site.  

By the way, I agree with newguy.  I would almost bet that "jedwards" is really the guy running the pdpunk blog and he is just desperately shilling our site to try to get hits and move up his google ranks.  But, then, on the other hand, he may be a guy from the APDA's moribund forum who just found his way here courtesy of pdpunk's blog.  - George

[Tim468]

The "pdpunk" site is a bit odd - no one else has posted there. I looked at it ages ago, and it looks somehow a bit different. He seems to have modified some of his older posts and changed them a bit (I think he used to say some negative things about me that are now gone).

Looking there took me to the APDA site. There have been only about 5 posts there since 2007. Some of the last posts well over a year ago were complexly negative "rants" against "ComeBackid" (aka the ComeBacKid here) who was posting fairly positively about linking up together. It was, frankly, odd.

The portal to the APDA site continues to "grow" but the forum continues to languish. Dr. Lue is featured prominently on the entry page. There is good information there, but there is little in the way of back and forth that is helpful for guys with questions. It is true that we can get cranky here with dumb questions or posters who are rude, but we are human and that's what you get with humans - imperfection. At least a guy can get the low down on Pentox and the VED here without getting flamed too badly.

Finally, it is odd, but it looked like "pdpunk" made one APDA forum post and then another that looked like he was talking to himself. That struck me as likely to be a guy with a duplicate membership who forgot which name he was logged in under. (Oops!) I hope that the urge to bicker and the anger gets better, but I do understand where that kind of anger comes from with this problem. Discouraging that behavior here (I recall that Hawk has busted guys (a guy?) here for making different posts that went "back and forth" that came from the same computer!) can be seen as "dictatorial" if people so chose to see it that way, but frankly, it is what helps this site not deteriorate into stupid name calling and flame wars.

Tim

[Hawk]

I certainly do not have disdain for doctors in general, and in fact I would have to spin through fifty years of my mental rolladex to come up with an individual doctor or two I have disdain for.  Even for those few, disdain is too strong of a word and those doctors have nothing to do with Peyronies Disease.

It is also interesting that Dr. Levine's publisher contacted me to forward a copy of the Levine book for my review.  Further, Dr. Levine thanked me for my review among a few other things.  A renown psychologists contacted me to commend this site for its contributions.  We have had several doctors posting here as patients and one is a moderator. I have strongly defended doctors by name, promoted doctors by name, and defended their right generally to expect pay for their significant efforts and contributions.

I have two close friends that are doctors, so I refuse to wear the title of having disdain for doctors.  I do not think any examination of the evidence could support such a claim.  Anyone that has ever been led to believe differently has been deceived with distorted hearsay information.

On the other hand, we do not have disdain for patient opinion, patient welfare, or patients' right to communicate openly as a society.  This is their discussion forum.  The forum component of the PDS is a virtual deck or patio at a friend's house where we can talk freely with those we trust about any issue of concern.  One percent of that may be about a less than impressive experience with a specific doctor or a specific appointment with a specific doctor.

Anyone that thinks that should be censored has disdain for patients.  If they are waiting for it to be censored here as it has been censored elsewhere, they will be waiting until hell freezes over.  I make no apologies for that.  In fact, I credit it for establishing this forum as the only functional English speaking forum for Peyronies Disease in the world.  

[Old Man]

Note to all:

I highly endorse the previous post by Hawk and support his position on this forum 110%. That means that I have the utmost respect of and confidence in his position relative to doctors. After all, we as patients sometimes forget that doctors are human, that they can and will make bad decisions or judgments with patients just like anyone else.

So, why can't we just move on, let the pdpunk stew in its own juice and not let it bother us. Proceed with vigor and we shall prevail.

Forget the "old forum" it has no place in the world of our "modern" and up to date forum where all can have their say in any manner.

Enough said, let's march on!!!

Old Man

[Tim468]

Here are my weekly mailings I get on Peyronie's related topics that appeared in the medical literature. Some are pretty interesting. Seems we pave the way when it comes to the VED!

<1>
Full Text Link Available
UI 19088529
AU Bell DS.
FA Bell, David S H.
IN Southside Endocrinology, Birmingham, AL 35205, USA.
 dshbell@yahoo.com
TI Peyronie disease in association with carvedilol: a case
 report.[see comment].
CM Comment in: South Med J. 2008 Nov;101(11):1092-3; PMID: 19088515
SO Southern Medical Journal.  101(11):1157-8, 2008 Nov.
AB Beta blockade is associated with the onset and progression of
 Peyronie disease (Peyronies Disease). To date, there has not been a report of Peyronies Disease
 occurring with the alpha/beta blocker carvedilol. It remains
 unproven but likely that carvedilol was the cause of the Peyronies Disease in the
 patient described in this case. It is hypothesized that because of
 carvedilol's vasodilating alpha adrenergic receptor stimulation and
 its anti-inflammatory effect, Peyronies Disease occurs less frequently with
 carvedilol than with other beta blockers. However, in this case the
 protective properties of carvedilol, like vasodilation and the
 anti-inflammatory effect, may not be sufficient to overcome its
 vasoconstricting beta adrenergic receptor blockade.
PT Case Reports.  Journal Article.

<2>
Full Text Link Available
UI 19088515
AU Wooten JM.
FA Wooten, James M.
TI Drug-induced sexual problems.[comment].
CM Comment on: South Med J. 2008 Nov;101(11):1157-8; PMID: 19088529
SO Southern Medical Journal.  101(11):1092-3, 2008 Nov.
PT Comment.  Editorial.

<3>
Full Text Link Available
UI 18947517
AU Zippe CD.  Pahlajani G.
FA Zippe, Craig D.  Pahlajani, Geetu.
IN Glickman Urological and Kidney Institute at Marymount, The
 Cleveland Clinic, Garfield Heights, OH 44125, USA. zippec@ccf.org
TI Vacuum erection devices to treat erectile dysfunction and early
 penile rehabilitation following radical prostatectomy.
SO Current Urology Reports.  9(6):506-13, 2008 Nov.
AB Vacuum erection devices (VED) are becoming first-line therapies
 for erectile dysfunction and preservation (rehabilitation) of
 erectile function following treatment for prostate cancer.
 Currently, phosphodiesterase-5 inhibitors have limited efficacy in
 elderly patients or patients with moderate to severe diabetes,
 hypertension, and coronary artery disease. Alternative therapies,
 such as VED, have emerged as a primary option for patients
 refractory to oral therapy. VED has also been successfully used in
 combination treatment with oral therapy and penile injections. More
 recently, there has been interest in the use of VED in early
 intervention protocols to encourage corporeal rehabilitation and
 prevention of post-radical prostatectomy venoocclusive dysfunction.
 This is evident by the preservation of penile length and girth seen
 with the early use of the VED following radical prostatectomy. There
 are ongoing studies to help preserve penile length and girth with
 early use of VED following prostate brachytherapy and external beam
 radiation for prostate cancer. Recently, there has also been
 interest in VED to help maintain penile length following surgical
 correction of Peyronie's disease and to increase penile size before
 implantation of the penile prosthesis.
PT Journal Article.

<4>
Full Text Link Available
UI 18947515
AU McCullough A.
FA McCullough, Andrew.
IN Department of Urology, New York University School of Medicine,
 New York, NY 10016, USA. andy.mccullough@nyumc.org
TI Penile change following radical prostatectomy: size, smooth
 muscle atrophy, and curve. [Review] [32 refs]
SO Current Urology Reports.  9(6):492-9, 2008 Nov.
AB Dr. Patrick Walsh's description of nerve-sparing prostatectomy
 was an important landmark in the surgical treatment of prostate
 cancer. Despite the dramatic improvement in postoperative potency
 rates, anecdotal reports of penile size loss were increasingly
 reported by patients. Experimental studies in animals revealed
 penile fibrosis and corporal cavernosal smooth muscle apoptosis
 after cavernosal nerve ablation. After an observational
 cross-sectional study demonstrated a time-dependent loss of penile
 length and circumference in men presenting with erectile dysfunction
 after nerve-sparing prostatectomy, several prospective studies
 supported the observational study. A prospective penile biopsy study
 before and after surgery demonstrated replacement of corporal smooth
 muscle with collagen and provided a possible explanation for loss of
 penile length. The mechanism has not yet been elucidated. This
 article reviews in detail the existing studies on loss of penile
 size after prostatectomy and possible etiologic mechanisms.
 [References: 32]
PT Journal Article.  Review.

<5>
Full Text Link Available
UI 18947513
AU Montague DK.  Angermeier KW.
FA Montague, Drogo K.  Angermeier, Kenneth W.
IN Center for Genitourinary Reconstruction, Glickman Urological and
 Kidney Institute, The Cleveland Clinic, Cleveland, OH 44195, USA.
 montagd@ccf.org
TI Increasing size with penile implants.
SO Current Urology Reports.  9(6):483-6, 2008 Nov.
AB Penile prosthesis implantation is suitable treatment for men with
 erectile dysfunction when nonsurgical treatment options fail or are
 otherwise unsatisfactory. Three-piece inflatable penile prostheses
 closely approach the ideal of producing normal penile flaccidity and
 erection. Nevertheless, even in men with normal corpora cavernosa,
 many report their prosthetic erection is shorter than their former
 natural erection. This is due to the lack of glans tumescence and
 the use of penile cylinders, which only expand in girth. Using
 girth- and length-expanding cylinders can decrease the loss of
 penile length frequently seen with prosthesis implantation. Some
 penile prosthesis recipients have abnormal corpora following radical
 prostatectomy or after removal of an infected penile prosthesis, or
 as the result of Peyronie's disease, obesity, or ischemic priapism.
 In these men with abnormal corpora, associated penile-lengthening
 procedures can be combined with penile prosthesis implantation.
 However, experience is limited with these combined procedures.
PT Journal Article.

<6>
Full Text Link Available
UI 18947504
AU Shindel AW.  Lue TF.
FA Shindel, Alan W.  Lue, Tom F.
IN Department of Urology, University of California, San Francisco,
 San Francisco, CA 94143, USA.
TI Peyronie's disease: past, present, future?.
SO Current Urology Reports.  9(6):425-7, 2008 Nov.
PT Journal Article.

<7>
UI 18564146
AU Rosen R.  Catania J.  Lue T.  Althof S.  Henne J.  Hellstrom W.
 Levine L.
FA Rosen, Raymond.  Catania, Joseph.  Lue, Tom.  Althof, Stanley.
 Henne, Jeff.  Hellstrom, Wayne.  Levine, Laurence.
IN New England Research Institutes, Watertown, MA 02472, USA.
 rrosen@neriscience.com
TI Impact of Peyronie's disease on sexual and psychosocial
 functioning: qualitative findings in patients and controls.
SO Journal of Sexual Medicine.  5(:1977-84, 2008 Aug.
AB INTRODUCTION: There are no validated scales for assessing the
 psychosocial impact of Peyronie's disease (Peyronies Disease), which affects
 approximately 5-10% of men over age 50. AIM: To develop a
 psychometrically valid outcome measure for assessing psychosocial
 and sexual consequences of Peyronies Disease. To conduct a qualitative study of men
 with Peyronies Disease and age-matched controls, and design a new patient-reported
 outcome measure of Peyronies Disease. METHODS: An expert advisory panel identified
 relevant topics and conceptual areas to be addressed based on
 clinical experience and literature reviews. A conceptual model was
 developed to serve as a discussion guide for qualitative interviews
 with geographically and ethnically diverse Peyronies Disease subjects and controls.
 Interviews were conducted in a focus-group format by a trained
 interviewer and were recorded and transcribed for qualitative
 analysis according to grounded theory concepts. MAIN OUTCOME
 MEASURE: Focus-group interviews. RESULTS: Focus-group interviews
 were conducted with 64 men (28 Peyronies Disease patients, 36 controls) in 13
 separate focus groups over a 3-month period. Blinded analysis of the
 interview transcripts identified four core domains: (i) physical
 appearance and self-image; (ii) sexual function and performance;
 (iii) Peyronies Disease-related pain and discomfort; and (iv) social stigmatization
 and isolation. Based on feedback from participants and experts, a
 new outcome questionnaire was developed to assess core domain
 responses in a structured, self-report format. CONCLUSIONS: This
 qualitative study helped to refine and broaden the focus of the
 conceptual model for further assessment. It also confirmed that Peyronies Disease
 has a major impact on sexual and psychological function in these
 patients.
PT Journal Article.  Research Support, Non-U.S. Gov't.

<8>
UI 18554257
AU Nelson CJ.  Diblasio C.  Kendirci M.  Hellstrom W.  Guhring P.
 Mulhall JP.
FA Nelson, Christian J.  Diblasio, Chris.  Kendirci, Muammer.
 Hellstrom, Wayne.  Guhring, Patricia.  Mulhall, John P.
IN Department of Psychiatry and Behavioral Sciences, Memorial Sloan
 Kettering-Cancer Center, New York, NY 10022, USA. nelsonc@mskcc.org
TI The chronology of depression and distress in men with Peyronie's
 disease.
SO Journal of Sexual Medicine.  5(:1985-90, 2008 Aug.
AB INTRODUCTION: For the practicing clinician, appreciating
 Peyronie's disease (Peyronies Disease) significant negative psychological impact is
 apparent. Despite this, there exists not a single study using
 validated instruments assessing this issue. AIMS: To document the
 effect of Peyronies Disease on the psychosocial status of men. MAIN OUTCOME
 MEASURES: The Center for Epidemiological Studies Depression scale
 (CES-D) for evaluation of depression and the SF-36 for quality of
 life assessment. METHODS: Men (N = 92; 54 +/- 11 years of age)
 presenting for Peyronies Disease evaluation completed the CES-D, Short Form-36
 (SF-36), and an inventory regarding Peyronies Disease. Partners were not assessed.
 RESULTS: A vast majority of men (88%) had a partner with a mean
 partner age of 49 +/- 11 years. The median duration of Peyronies Disease at
 presentation was 12 (1-360) months. As a whole, 48% were classified
 as depressed on the CES-D (26% moderate, 21% severe). These subjects
 were then placed into groups according to the length of time since
 diagnosis of Peyronies Disease. Length-of-time groups were: 0-6 months, 6-12
 months, 12-18 months, and >18 months. The percent of men scoring
 above the CES-D cutoff for depression remained consistently high
 with no significant difference across time since diagnosis groups.
 These results are supported by data from the Mental Health subscale
 (MHS) of the SF-36 (lower scores indicate lower mental heath). For
 the entire sample, the MHS standardized mean of 46.80 was
 significantly lower (P < 0.05) than the general male population
 standardized mean of 50. The MHS means stayed consistently low (no
 statistical difference) across time since diagnosis groups.
 CONCLUSIONS: Using validated instruments, we have demonstrated that
 48% of men with Peyronies Disease have clinically meaningful depression that would
 warrant medical evaluation. This high level of depression stayed
 consistent across time since diagnosis. These data suggest that most
 men do not psychologically adjust to their diagnosis of Peyronies Disease and all
 men with Peyronies Disease should be considered appropriate mental health
 screening.
PT Journal Article.

[Old Man]

Dr. Tim:

Finally, the VED therapy that I have advocated for oh so many years now is getting recongized by the medical community. Hopefully, more and more uros will get on board and develop a sysem of rehab therapy for ED, Peyronies Disease and post radical surgery.

I suppose that I am light years ahead of my time with this therapy, huh?

Old Man

[Angus]

I suppose that I am light years ahead of my time with this therapy, huh?

Old Man

YUP.

  As you know, I support VED therapy. I had success with it like some other guys that took the plunge and stuck with the program. With recognition and affirmation by urologists, VED therapy would get the credibility it so much deserves.  

[Iceman]

4 months with no pain - finally some blue sky...

[Charles J. Williams]

Aftershave is a lotion, gel, balm, or liquid used mainly by men after they have finished shaving. It may contain an antiseptic agent such as alcohol to prevent infection from cuts as well as numb damaged skin, a perfume to enhance scent, and a moisturizer to soften the skin. An alcohol-based, fragrance-free astringent can be used as an aftershave. It is said that the alcohol in the aftershave closes pores in the skin and prevents irritation ("razor burn").

Many fashion designer houses lend their names to brands of aftershave, and thus aftershave is sometimes mistakenly referred to as Eau de Cologne. <Web link deleted as SPAM>

This user is banned for Spamming the forum
Administrator

[Old Man]

What in the world does after shave lotion have to do with treating Peyronies Disease?? I have never heard of Peyronies Disease needing a shave!!!

Old Man

[mikesb]

What in the world does after shave lotion have to do with treating Peyronies Disease?? I have never heard of Peyronies Disease needing a shave!!!

Old Man

Shaving the pubic area for better VED seal? Otherwise like you Old Man, no comprende?

[Old Man]

Mikesb:

Shaving the pubic hair for a better seal does not cause any problems. Using after shave that helps prevent razor burn just might irritate the sensitive skin of ones most prized possession. Don't think I would entertain using it!

I could see using shaving cream, in fact several guys on the forum report using it while using the VED in their shower and/or tub baths.

FYI, no speaka da Espanol, just good USA Southern drawl!!!

Old Man

[Hawk]

Guys,

I am deleting these posts.  The first poster was banned.  It was a spam account for the sole purpose of posting commercial links on our forum.  He registered on name, posted a Viagra internet sales link the registered another name and posted an aftershave link.

Oldman first noticed the issue and then Mikesb responded without reading the "banned" notes on the original post.  Now we have a discussion that disrupts our topic.  Therefore I will clean the topic up for readers by deleting the post that violated our rules and all of our responses.

In the future, when you see something this obviously off topic, just PM me rather than posting.

Thanks Guys!

[McNally]

Hey all -

This is probably way off topic, but I got this through an Engadget feed (http://www.engadget.com/2009/02/15/laser-bonded-healing-could-replace-needle-and-thread/). Started me wondering what applications to Peyronies this might all have in the future.

"It sounds more like something you'd see in X-Men than on an actual operating table in real life, but a team at Massachusetts General Hospital has developed a way to heal surgical incisions with laser light. Christened laser-bonded healing, the methodology has been studied for years, but up until now, scientists have found it impossible to find the perfect balance of heat required to coax tissue into healing itself back together. Irene Kochevar described the process as "nano suturing," as diminutive collagen fibers are woven together in a way that the old-fashioned needle-and-thread method simply can't match. The benefits, as you can likely imagine, are numerous: less scarring, faster recovery, the potential for fewer infections and bragging rights that you were struck with lasers and survived. Still, the procedure is far from becoming commonplace in ORs, given that the dermatological procedure hasn't even been submitted to the FDA yet. 'Til then, it's up to you and Wolverine to figure things out."

McNally

[romchar]

Does anyone know why the Lariche procedure isn't being used in the u.s.? it seems much more straight forward and less intrusive-------thanks

[Hawk]

No, we do not know why.  We suspect that it is also not being used in Europe since we have found no one in Europe that knows anything about it and we have many European members.  We have actually written and translated emails into French to contact doctors that were associated with this procedure but get no response.  

It is as illusive as the legendary unicorn, maybe more so.

[ComeBacKid]

Less intrusive?  To me it would seem taking a needle and stabbing it into your penis several times in different locations is very intrusive! While the lariche technique was once touted as extremely effective, it has simply fallen off the face of the earth and I have yet to hear of anyone from europe on this forum that had the lariche technique.  If it was so effective it would surely have made its way to the usa.

Comebackid

[romchar]

thanks for trying to clarify the lariche----------guess it will remain a mystery for some time

[Believer]

Guys,

Did anyone have a flexible cystoscopy done? My doc suggested it when I mentioned that I periodically sense discomfort when urinating. I really think it's due to Peyronies Disease, sometimes the plaques are sore and overall, their presence in my opinion, causes pressure on the urethra.

I'm thinking about delaying it. The thought of a long cord shoved into my... just doesn't seem pleasant.

Thanks

[ComeBacKid]

Believer,

I have not spoken to one person that had that done.  I'd get on pentox if you don't have any health problems.  Sometimes I have issues urinating or have some slight pain, I think thats normal depending on how bad your curve is.  I think that would be to invasive and cause trauma.  I'm not a doctor and you should make your own decision, but all the docs used to say how great verapamil injections were and they didn't pan out either...

Comebackid

[Hitman]

I had that done in mid 2006 and everything was fine.

[George999]

I've had it done multiple times.  Its not the most pleasant thing in the world, but not terribly risky if you have a competent doc.  I had it back before they had the newer flexible arrangement.  They used a solid tube back then and pushed it all the way up into the bladder believe it or not.  The new equipment is a piece of cake by comparison.  If your doc is suspicious of a possible problem, you should probably go for it.  If nothing else, it will rule stuff out fairly easily.  If nothing is found, it is probably not physical pressure or constriction.  It is more likely a general inflammatory syndrome.  Inflammation in adjacent areas can spread as cytokines drift into adjacent tissues.  But Comeback is giving you excellent advice in recommending the Pentox.  I wish I had got on it sooner.  It is really the best oral treatment out there.  - George

[Believer]

***IMPORTANT***

I discovered a website that offers a free download of Dr. Levine's textbook - "Peyronie's Disease: A Guide to Clinical Management".

After a brief registration, you may download at: http://www.bioxplorer.com/content/view/245/111

I am not aware of any copyright issues and I am not encouraging illegal use of copyrighted material, but I do want to bring to your attention that there is such a website where the book can be downloaded free of charge.

I encourage all of you to get your hands on this book by any means you deem proper as it is a GREAT resource for all of us. Please read it and share your thoughts.

Believer

[Hawk]

I want to make it clear that the book Believer is talking about is not  Dr. Levine's Patient Guide.  The book offered on the site he linked to is the more scholarly book on clinical management.  This book was more directed at the medical community and sold for over $100.00.    It must be that the listed site has bought rights to this book or that they have some sort of arrangement they have worked out.  It may even be that the paying market for the book has simply been exhausted.  

[Tim468]

Great find - lots of information.

Tim

[souldigger]

i couldn't get Levine's book to open after downloading it.  For those of you who were able to open it, what application did you use?

[Believer]

Google "winrar" - it's a free extractor.

[newguy]

From the Channel 4 in the UK. A peyronie's consultation, nesbit procedure and follow up. It's a vey short piece, but at least it helps to increase recognision of the condition:

http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/

Hopefully it's viewable outside of the UK.

[Iceman]

just came back from overseas and no dramas with my ved at customs - it was even using it at the airport terminal...only joking

[Iceman]

From the Channel 4 in the UK. A peyronie's consultation, nesbit procedure and follow up. It's a vey short piece, but at least it helps to increase recognision of the condition:

http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/

Hopefully it's viewable outside of the UK.

so would one recommend the nesbitt procedure based on this?? - the patient seemed happy  - was the doctor real??

[newguy]

Yes, he is a real doctor specialising in sexual health, but I suspect that those taking part are given a much more thorough examination than the snippet broadcast. The aim of the program really is to highlight intimate problems and conditions that are often uncomfortable to talk about, so from that perspective I think they did a good job. Millions of people likely saw the show when it was originally broadcast.

Where the video is a little dubious is the rose tinted nature of it. There was little talk of complications or anything of that nature.

[Hawk]

Thanks for the post Newguy.

This outfit contacted me VIA email about a year ago about this segment and solicited information, and contacts.  They were interested in doctors and patients that might help.  We had several back and forth emails and I think a member or two actually contacted them.  At any rate I am happy for the exposure that it gave to Peyronies Disease.  I am sure many saw it that will now recognize symptoms that would have otherwise been baffling.  It also helps to open a more pubic dialog.