Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[Tim468]

Where to begin indeed...

I see that you are worried, and I am glad that you are now taking steps to see if A) something is even wrong with you, B) if something can be done about it, C) if something NEEDS to be done about it

All hard stuff to take on. If you have a cell phone you can take a digital picture of your erect penis to guesstimate the degree of curvature. From what you write here, I cannot even tell if you curve at all, or if you do, to what degree (literally - how many degrees does it curve?).

Given that you are naive, and clearly smart enough to see it and admit it, I think that you are likely to learn a lot and to come away much happier once you are informed.

Many of us have curvatures to our penis and lead active and happy sex lives. Some of us have developed bends that are too severe to allow for easy sexual intercourse - and we deal with it in a variety of ways (emotional withdrawal, determined pursuit of a cure, seeking surgery, finding alternative ways to be sexual).

Hopefully you will find some help here. I will chip in with my two cents worth now:

1) Measure the degree of angulation - is it an abrupt curve or a gentle curve?

2) Seek help again - take measurements or pictures so that you are better able to get good advise. It may be very hard to do, but speaking to your mother and father will help you immeasurably. For one thing, for all of us who have changed diapers and watched goofy ten year olds prance about naked after baths, we are well aware of what the general shape of the penis is when erect, and they will KNOW if you have always been that way, almost certainly.

3) Read up on anatomy so that you can hear good advise when you get it. It as going to annoy people to have to explain basic when they want to talk about more complicated or speicific things with you.

4) A phone call to the doctors should allow him to prepare for your visit by getting an injection ready to induce an erection. If he does not have the ability to do that, then do not go to him!

These basic steps should help jumpstart you towwards a better understanding of yourself and help your ability to get help from others.

Welcome!

Tim

[Ash]

Hello everyone I'm 18 and I have a great fear that I may have this condition . Here's my story.
Almost 4 months ago, towards the end of November, one night I couldn't get an erection and I freaked out. From then on I had erectile difficulties, so I went to a urologist and he gave me a sample of levitra. The levitra allowed me to get normal erections, but I was very anxious after this and the problem persisted. So my local urologist referred me to another urologist to get a duplex Doppler ultrasound. The urologist induced an erection with a low dose of prostaglandin e1. The test results came out normal and the urologist told me to forget about it. The problem is,

1)About a week later (end of December) when getting an erection I noticed that I lost some length and girth. I thought that it was nothing and that it would go away but it did not.  
2)Two months after the doppler I took some pictures of the underside of my erect penis and noticed that there is some narrowing on the underside of the shaft. I've been to 3 urologists, 2 of them said they don't think I have Peyronies Disease and one wasn't sure. I have no palpable plaque- one of my urologists said he could not feel any plaque or scar tissue. When I showed them the pictures they had no explanation. I'm taking cialis nightly once a week. I'm taking 800 iu vitamin E, vitamin B, L-Arginine, Acetyl L Carnitine, Fish oils,  and Maca.

I can't recall any trauma to my erect penis. All I can remember is that I did kegel exercises for a few weeks that gave me very strong erections. Also, a week before all this happened, my upper arms broke out in hives; they were itchy before this because of a cream I applied, I don't know if it was caused by the cream or if it was stress induced.

I really don't know what to do. I have an appointment with doctor Mulhall later this month, but I think he is just going to tell me the same thing the other urologists told me. Do you think I have Peyronies Disease? Is there anything I should be doing now? Please help

[Hawk]

I am overwhelmed that we have 2 new teens that have joined us here in one day, with problems that seem to go beyond common obsessing.  I guess it is this that makes us glad that we have all contributed to a place where you can get support.  

Ash,
For now (I am in a time crunch) I want to say that your supplements and your plan of attack seem to be on target. Be sure to write your questions down when you go to see Dr. Mulhall and give him a copy before you start asking.  I and others here have also seen him.  Unless you get a different approach, he will check the stretchability of your flaccid penis and palpitate for plaque..  You will receive an injection for an erection, and a quick visual exam. He will discount any possibility that any supplement can help.  He will offer Verapamil injections or colchicine.  I think he will likely discount the VED although I may be wrong since I did not discuss it with him for Peyronies Disease but rather oxygenation.

PS: I am a a bit shy of penile injections since I am convinced that 8 months of twice weekly injections under Dr. Mulhall's direction caused my Peyronies Disease. (click on this quote to see my history)

Changsta,

Tim gave you some great advice.  Statistically, and in the absence of injury, it is far more likely you have a congenital curve rather than Peyronies Disease.  IF that is true, you can expect that it will not progress.  If it is a manageable curve it may not require treatment and may be a uniqueness that proves to be an asset.  If it does require adjustments (physical or psychological) or surgery, it will wait until you have time to sensibly learn and apply wise decisions.  Right now the main thing we know is that you say you have a curve and it is a psychological issue with you.  It could be that the psychological aspects are all that need to be addressed.

Welcome and good luck to both of you young men.

[changsta]

Given that there aren't an overwhelming number of members, you veterans should easily be able to educate new members as they step through the door. The information about peyronie's is too vague and scattered. I still have yet to find a good source of information. The reason why I'm saying this is because I think I know why I have it. I'm not just talking about the shaft, I'm talking about where the shaft ends and what the tubes are that continue inside of you. Forgive my attittude, but there really should be a section with all the information on peyronie's (and the male anatomy in general) laid out, easy to access and read. You can't say that library has all the information you need. If you want me to go through every thread and post to find bits and peices, that's just not going to work. I've found good info sites on hypothesis for causes and what the current available treatments are, but aren't we also trying to learn more about it as well and find new ways of treatment or better understanding? And if there aren't any experts on the field, or knowledgable people here, then I don't know what I'm here. Stories and Feel better posts are just useless information, we want results.

Don't get me wrong, I do appreciate the advice and it has been helpful. Thanks, and I do realize I have a lot of homework to do.

[Hawk]

Changsta.

Thanks for the input.  If you do not feel informed or supported then I think we do need to consider some changes.  I have read your post slowly twice however, and I think I am still missing some of your points.  A few quotes I am having trouble understanding are:

you veterans should easily be able to educate new members as they step through the door.

The reason why I'm saying this is because I think I know why I have it.

there really should be a section with all the information on peyronie's (and the male anatomy in general) laid out,

I think the last point would take a 2000 page book with many areas of disagreement.

if there aren't any experts on the field, or knowledgeable people here, then I don't know what I'm here.

On this point, make no mistake.  We are electricians, computer specialists, doctors, teachers, students, psychologists, authors, pharmacists, janitors, police officers and actors.  We are here to share information and support each other because we could find no other suitable sources.  None of us, standing alone, are experts.  We all have something to share and bring to the table.  That includes you.  Frankly, I have yet to be convinced that anyone has comprehensive expert knowledge on Peyronies Disease, including leading urologists.

I ask that you check out our website http://www.peyroniessociety.org/
and the Newly Diagnosed (read only) section of the forum.  This section contains highlights of the topics found here on the main forum. https://www.peyroniesforum.net/index.php/board,18.0.html

AFTER doing so, I then suggest you clarify your suggestions on specifically what we could do to improve the site, and how we could do it.
Also please indicate how you would be willing to help if that is an option.

[Old Man]

Changsta:

Sorry to hear that you are experiencing the problem you are relating about on this forum. One suggestion for you that might help rather than doing a reply by reply search on this forum is this: type in an excerpt of what your question is in the seach block and it should help with getting to a specific topic sooner.

Also, in order to get a better knowledge of the male anatomy is to do a Google search for it. Just type in male anatomy, hit search and you will see many and varied items concerning this topic. Also, you might want to do a search on the website for the Mayo Clinic. They have good reference materials on the subject. WebMD also has a good reference file on many and varied subjects concerning male and female heath questions, so try that search also.

If we can help in any way further, just let us know and we will be there for you. By saying we, I mean all the guys and gals on this forum.

Good luck to you, Old Man

[Liam]

A library has many good illustrated books on anatomy.  A medical library is even better.

On a seperated note,  if you look at your penis long enough, it does funny things.  Don't let that make you worry.  If you obsess too much, seek mental health counseling.  I am serious and not trying to be unkind.  It will help.

[sandiegofan]

i was wondering if the curvature/disease is deadly?

[Hawk]

Peyronies Disease is a fibrotic disease of the penis and as such does not progress to penile cancer or any other life threatening disease

[Ash]

Hawk,
Even if the doctor does examine my flaccid penis, I am pretty sure he will not find any plaque-I have already been examined by another good urologist who told me I didn't have any. What baffles me is the loss in girth and slight loss in length--it doesn't make any sense to me. I know its possible to have Peyronies Disease without palpable plaque but that would be extremely rare for someone like me. I'm hoping I don't have that. Do you think if I get another doppler ultrasound, or MRI of the penis, at this point in time (it's been 3 months) If I had the condition would evidence (ie. Inflammation, scar tissue) show up on the test?

[Tim468]

Ash,

If you are not getting fully hard, then you will not have the girth or the length that you normally have. If you think that you have a disease of the penis (whether or not you actually have it), do you not see how this might affect your ability to get erect?

"Gee - let's see if my penis is going to look deformed and weird" does not sound like an erection-inducing thought. Not at all like "Darling let me look at you naked" sounds.

So, before you drive yourself nuts, get a drug-induced erection. If it is normal, then you are at the end of your journey, and you know that you can go to work on your mild anxiety disorder, but do not have to worry about your penis. If it is abnormal then you can start to work on what to do about it.

I kind of doubt it Peyronie's or even abnormal at all from what you have said.

Tim

[Hawk]

Peyronies Disease can only be reversed if: something interrupts the process and allows slow normalization through the normal cell replacement activity that takes place with all of our cells in all areas of the body.  The other possibility is if something actually has the ability to attack the plaque and break it down.  That requires both the ability to break down scar tissue and to get it to the scar tissue.

Since plaque is scar tissue, I submit that plain dermal scar tissue would respond to any agent that would impact Peyronies Disease plaque.  Since dermal scar tissue is less aggressive, easier to access, and objectively measure, it should be an obvious test for the anti-scar activity of any agent.  Can anyone think of any sound reason why topical verapamil, heat, DMSO, Thacker formula, electrical stimulation, or any other such treatment would not be expected to decrease a dermal scar if it is expected to decrease Peyronies Disease plaque?

If no one can find a hole in this logic, than I say the proof is on a simple dermal scar.  We all have them.  In fact, why would the same not be true of systemic treatments that we take internally?  Is this logic flawed? If it cannot be shown to be flawed, then it lays out an obvious test for the efficacy of almost every treatment.  This test would demystify all claimed treatments on the subject of ability to attack scar tissue.  The only other issue would become delivery to the plaque and if the plaque would be MORE problematic.  It is very doubtful that Peyronies Disease plaque would be less problematic.

Simply put, if topical verapamil cannot reduce my kness scar, how would it ever reduce my penile plaque?

Your thoughts and input please.

[Steve]

Interesting idea Hawk.

I think that it all hinges on the assumption that all scars are the same.  I'm not a doctor, but I think that if a coorelation can be determined between Peyronies Disease plaque (scar) and dermal scar, than your test would be valid.  I suspect that the research has already been done to extract Peyronies Disease plaque by someone.  If we can find their research and find out how to compare the two tissue types, we'd be a long way to validating your testing procedure.

Anyone out there want to pick up the ball and dig out the research?

Steve

[Hawk]

Steve,

The following is my understanding of this issue.  Peyronies Disease plaque has been thoroughly examined and microscopically and it is very similar to hypertrophic scaring and keloids.  If anything, these are MORE resistant to control than normal dermal scaring.  If true, than anything that does not work on dermal scarring, would could not be expected to work on more aggressive scarring such as keloids, hypertrophic scarring and Peyronies Disease.

[Steve]

 OK.  Then the dermal scar 'test' would be a screening test...if it does nothing for a dermal scar, than it would probably do nothing for keloid/hypertrophic/Peyronies Disease types of scar.

Looks like it's time for everyone to test their 'favorite' cure against a dermal scar...now, how do I apply a VED to a scar on my knee  

Steve

[Old Man]

Steve:

Just had to jump in on this one! What you do is lubricate the scar well, lubricate the opening of the VED cylinder, place it over the scar and proceed to pump it up.

Just kidding, but it could work.

Old Man

[Steve]

  OK, but how do you use the multi-cylinders

(maybe we should move this to the Light Side thread)

[George999]

Hawk - I agree with you completely on this issue.  In fact, one way in which I evaluate the supps I'm taking for Peyronies is to carefully watch their effect on dermal scars.  I actually am at the point where I am watching dermal scars disappear gradually before my eyes.  But even that takes a long time to happen and as you point out, Peyronies is much more stubborn.  But I feel that the very fact I am getting a response at the dermal level is an indication that I am headed in the right direction.  I figure that if a dermal scar dissolves in a year or two, then maybe ten or fifteen years from now the Peyronies will clear.  Its a very long process and also very dynamic.  There have been times that I could have panicked at the apparent aggressiveness of Peyronies, only to have it retreat completely within a few days.   It requires a tenacious approach that looks at things from the long term, otherwise it will drive you nuts.

- George

Peyronies Disease can only be reversed if: something interrupts the process and allows slow normalization through the normal cell replacement activity that takes place with all of our cells in all areas of the body.  The other possibility is if something actually has the ability to attack the plaque and break it down.  That requires both the ability to break down scar tissue and to get it to the scar tissue.

Since plaque is scar tissue, I submit that plain dermal scar tissue would respond to any agent that would impact Peyronies Disease plaque.  Since dermal scar tissue is less aggressive, easier to access, and objectively measure, it should be an obvious test for the anti-scar activity of any agent.  Can anyone think of any sound reason why topical verapamil, heat, DMSO, Thacker formula, electrical stimulation, or any other such treatment would not be expected to decrease a dermal scar if it is expected to decrease Peyronies Disease plaque?

If no one can find a hole in this logic, than I say the proof is on a simple dermal scar.  We all have them.  In fact, why would the same not be true of systemic treatments that we take internally?  Is this logic flawed? If it cannot be shown to be flawed, then it lays out an obvious test for the efficacy of almost every treatment.  This test would demystify all claimed treatments on the subject of ability to attack scar tissue.  The only other issue would become delivery to the plaque and if the plaque would be MORE problematic.  It is very doubtful that Peyronies Disease plaque would be less problematic.

Simply put, if topical verapamil cannot reduce my kness scar, how would it ever reduce my penile plaque?

Your thoughts and input please.

[Jack]

Gentlemen, how's it goin.  I'm always hoping that I'll never have to come back here (becuase my problems are gone, not becuase you guys aren't good company, of course), but unfortunately I'm not so lucky.

Well, on to my question....  My case of "Peyronies Disease" (assuming that's what it is, which I couldn't figure out what else it could even be) seems extremely unusual from everything I've read.  Like I've explained before, my dick, while flaccid, feels like a rubber tube for lack of a better term - it's hard underneath, and will usually have a bend to the right.  Also, I never have morning wood... Unless I take my etodolac, but even then, the erections aren't rock hard and dissapear either almost immideately, or within a couple minnutes.  However, I have NO bend while erect, and I can feel no "nodules", as they're reffered to, and I also have NO pain when erect (when flaccid though, I willl occasionally get a "tightening" feeling, which can be uncomfortable).  I will never get spontaneoous errections anymore, and it takes ALOT of stimulation to get it to full mass, and even then it's a b*tch trying to keep it up.  Another thing, the head is usually cold and discolored, as if the blood supply to it is weak.

My question: is this even Peyronies Disease?  There's no bend while erect, and aside from the head not inflating completely, and assuming I could hold a sturdy erection, a woman wouldn't even know there's a problem.  What would this even be if it isn't Peyronies Disease?  Why do I get no bend while erect, but one while soft?  Why is my dick all hard and rigid when it's supposed to be flaccid, and why are there no "nodules" present?

Are there any other guys with a case like this, and if so, what's the difference?  

[Tim468]

Jack,

You pose good questions. I think that they would best be answered with some data. The data I would want to gather are:

1) An exam at the hands of an experienced and thoughtful urologist.
2) A color doppler ultrasound to assess flow while flaccid and erect (drug induced erection via an injection), and to look for calcification and/or fibrosis.

It is possible that you have a fibrotic condition that is similar to but not identical to Peyronie's. It seems that when you are erect, whatever "thickening" you have is still stretchy enough to allow for a full erection. The fibrotic tissue could be the tunica or even in the corpora cavernosa itself. It sounds more like the latter to me. If you have some formation of scar in the chambers that hold blood (in spongy tissue that can easily engorge) then that could account for a rubbery feeling, but an ability to still get erect. Such a anatomic location for the problem might also account for why it is that you have difficulty getting erect.

If I were you, I would very much want to know how my erection looked after using a VED - and particularly I would want to see if the head looked healthier.

It is possible that you have a problem with either nerves or blood vessels, and the rubbery feeling comes from a generalized "turtle effect" of the penis wanting to shrink up, like after diving into cold water (which is accomplished by smooth muscles contracting down). At such times, the penis is firmer than usual, but smaller too (obviously). Then, with erection, the penis can fill up, but with difficulty or only reluctantly.

Either possibility sounds reasonable, but in either event, it seems that blood flow to the head is impaired, and this mandates a urologic evaluation similar to the one I just described. A general health survey is indicated as well to look for diabetes or heart disease, which could affect blood vessel function.

Tim

[PainIsGrowth]

Hello All,
I was wondering if anyone who has taken Pentox (Trental) has experienced a worsening of ED after beginning the treatment.  I have noticed an more full flacid size, but it is even harder to achieve erections now?  Also, how long has anyone taken it for before they noticed improvements in ED or bend?  Does Viagra or another PDE5 inhibitor w/Pentox improve ED significantly?  Finally, how serious was the onset of ED once the peyronie's symptoms began manifesting.  Mine was like a 80% erection reduction ability almost overnight.  Is this typical for not a major bend?  Thanks to all and goodluck!

[gibson101]

Jack

I have a very similar situation that you have described except erections are not such an issue for me. I can get erections but they are not the same size as before.... I can feel two long hard lines runnig from the base to the top which I do not know what they are. I have been to see many urologist even some of the top and for some reason unbeknown to me they do not seem to think their is a problem or take me seriously. When I go to them my little man shrivles up from nerves and you cant feel those two long lines which I want them to see.....I am young so I guess that contributes to them not taking me that seriously. But its maddening because do they think I just woke up one morning and imagined my penis hardening??anyway.......if you go to the urologist please please let me know what comes of it!! I am on pentox and L-arginine and CIALIS which im hoping will help over time...i have seen a tiny improvement but nothing significant.

Good luck

[ThisSux]

Jack

I have a very similar situation that you have described except erections are not such an issue for me. I can get erections but they are not the same size as before.... I can feel two long hard lines runnig from the base to the top which I do not know what they are.

Jack,

After an injury 2 years ago from sexual activity while not fully erect (after already going twice... ), I developed 3 hard lines running from the base to the top as well. They are thicker towards the base of the shaft and run straight down to the glans (and get thinner as they go). I have some shrinkage where they are their thickest and also unfortunately daily pain. They feel almost like tendons.

Other symptom is that penis seems much more succeptible to injury.

I went to Dr. Mulhall in NY about 1.5 years ago and he told me "I dont detect any plaques but you do have longitudinal ridges that some people think are indicative of peyronies...I am not so convinced" he also said that I dont have "typical" peyronies disease. I suspect he might change his opinion if I saw him again.

I hope this helps you in some way. I never had a doppler done but now I am considering it...as well as considering getting a script for pentox/viagra.

Right now I am just taking 400 IU E, 2 grams ALCAR and 3 grams Arginine  daily.

TS

[Liam]

These conditions have symptoms similar to what have been described.  Try doing a Google search with these terms.  Try adding "penis" to the search.

Also, search the forum for references to these two conditions.  When you go to your doctor, ask about them by name.

Hey..... at least its something to rule out.

Liam

[Tim468]

Hre are some latest publications and (for some of them) the abstracts.

I think the jury is still out on SIS system of grafting - but I personally think that use of the VED might improve outcomes for any grafting material (including SIS).

Levine showed that verapamil by iontophoresis is just a bit better than saline by iopntophoresis - but both were NOT compared to doing nothing at all. So it is still not clear if either are better than nothing.

The last article tells us nothing new - being a review article only.

Tim

**********************************************


Full Text Link Available
UI 17296450
AU Knoll LD.
FA Knoll, L Dean.
TI Re: porcine small intestinal submucosa is not an ideal graft
 material for Peyronie's disease surgery. T. John, G. Bandi and R.
 Santucci J Urol 2006; 176: 1025-1029.[comment].
CM Comment on: J Urol. 2006 Sep;176(3):1025-8; discussion 1029;
 PMID: 16890683
SO Journal of Urology.  177(3):1204, 2007 Mar.
PT Comment.  Letter.

<2>
Full Text Link Available
UI 17296390
AU Greenfield JM.  Shah SJ.  Levine LA.
FA Greenfield, Jason M.  Shah, Sneha J.  Levine, Laurence A.
IN Department of Urology, Rush University Medical Center, Chicago,
 Illinois 60612, USA.
TI Verapamil versus saline in electromotive drug administration for
 Peyronie's disease: a double-blind, placebo controlled trial. SO Journal of Urology.  177(3):972-5, 2007 Mar. AB PURPOSE: While surgery remains the gold standard of therapy to
 correct the acquired curvature of Peyronie's disease, the search for
 a less invasive therapy continues. Transdermal drug delivery was
 proposed to be superior to oral or injection therapy because it
 bypasses hepatic metabolism and minimizes the pain of injection.
 After electromotive drug administration with verapamil tunica
 albuginea specimens were demonstrated to contain detectable levels
 of the drug. Due to varying success with verapamil as injectable
 therapy for Peyronie's disease we performed a double-blind, placebo
 controlled trial to determine the effectiveness of verapamil
 delivered through electromotive drug administration. MATERIALS AND
 METHODS: A total of 42 men with Peyronie's disease volunteered to
 participate in this study, which was approved by our institutional
 review board. A genitourinary examination was performed on all
 patients, including plaque location, stretched penile length,
 objective measurement of curvature after papaverine injection and
 duplex ultrasound. Each subject was randomized to receive 10 mg
 verapamil in 4 cc saline or 4 cc saline via electromotive drug
 administration. A Mini-Physionizer (Physion, Mirandola, Italy)
 device was used at a power of 2.4 mA for 20 minutes. Treatments were
 performed 2 times weekly for 3 months. After 3 months each patient
 was reevaluated with physical examination and duplex ultrasound by a
 technician blinded to the treatment received. A modified erectile
 dysfunction index of treatment satisfaction questionnaire was also
 completed by each patient. RESULTS: A total of 23 patients were
 randomized to the verapamil treatment group (group 1) and 19 were
 randomized to the saline group (group 2). There were no significant
 differences between patient groups with respect to patient age,
 disease duration or pretreatment curvature. In group 1, 15 patients
 (65%) had measured improvement (mean 9.1 degrees, range 5 to 30), 5
 (22%) had no change and in 3 (13%) the condition worsened. In group
 2, 11 patients (58%) had measured improvement (mean 7.6 degrees,
 range 5 to 30), 7 (37%) showed no change and in 1 (5%) the condition
 worsened. To better evaluate effectiveness the total number of
 patients experiencing significant improvement (20 degrees or
 greater) was calculated and compared. Seven patients (30%) in group
 1 and 4 (21%) in group 2 achieved this criterion. Although a greater
 percent of patients treated with verapamil had improved curvature,
 the results were not statistically significant. CONCLUSIONS:
 Although a greater percent of patients treated with verapamil in our
 electromotive drug administration protocol had a measured decrease
 in curvature, the results were not statistically significant.
 Further research is necessary to determine whether electric current
 may have a role in the treatment of Peyronie's disease as well as if
 verapamil delivered via electromotive drug administration may have a
 role as effective treatment. Electromotive drug administration is a
 treatment option in the patient whose major complaint is pain or in
 the patient with mild curvature who does not wish to undergo
 intralesional therapy or surgical correction.
PT Journal Article.  Randomized Controlled Trial.

<3>
UI 17287870
AU Akin-Olugbade Y.  Mulhall JP.
FA Akin-Olugbade, Yemi.  Mulhall, John P.
IN Department of Urology, Weill Medical College of Cornell
 University, New York Presbyterian Hospital, NY 10021, USA.
TI The medical management of Peyronie's disease. [Review] [62 refs] SO Nature Clinical Practice Urology.  4(2):95-103, 2007 Feb. AB There are a wide variety of medical treatments that are available
 to the practicing urologist, including oral agents, topical creams
 and gels with or without iontophoresis, intralesional injection
 therapy, radiation therapy, extracorporeal shockwave therapy, and
 laser therapy. Medical management of Peyronie's disease might be a
 valuable treatment option for this debilitating disorder, especially
 in the early symptomatic stages of the disease. Although no single
 modality has been demonstrated to have superior efficacy,
 intralesional therapy appears to confer some benefit. Multicenter,
 large-scale, randomized, controlled studies are necessary to fully
 establish the efficacy of the available treatments. Until such
 trials are conducted, a rational approach involving combination
 therapy is the most appropriate method to treat these patients. In
 this Review, the current medical treatment options available for the
 management of Peyronie's disease are discussed and a management
 algorithm is proposed. [References: 62]
PT Journal Article.  Review.

[mark501]

Is there anyone on this forum with Peyronies Disease that also has a diagnosis of having Raynaud's Disease? Raynaud's is  sometimes treated with low dose calcium channel blockers. If you are being treated for Raynaud's with calcium channel blockers, has it had any effect on your Peyronies Disease?  

[bodoo2u]

I can see that someone has put a lot of effort into developing this website on promoting penis enlargement techniques combined with their products http://www.herballove.com/library/resource/penisenlargement/ballooning.asp

I couldn't find anything on this forum, but I'm sure it has been addressed, because thankfully we discuss it all here.

My question is this: are there any techniques or products that will grow a penis, healthy or otherwise. I, of course, have Peyronies Disease and I have discussed the use of a VED with many of you on the forum. I guess what I'm asking is whether the different parts of the penis be changed to increase length and girth? What do the doctors say? What about the alternative practitioners; what do they say?

[Liam]

The realistic goal of traction or VED is to regain some of what we've lost.  I think both techniques are of benefit.  But, I don't know of any real way to increase your actual size above what God gave you.  



Liam

[youngPD]

Hi again
(and thank you Liam for your last greetings in response to my previous post..)
I have a severe case of Peyronies Disease  (I am 33 ,healthy and fit apart from my Peyronies Disease)
I have All the other "gifts" ,who came like in a package deal : shrinkage ,ED (can't maintain an erection unless constant manual stimulation,and I have diffused fibrosis over the organ. I have to notify that the onset of my Peyronies Disease has started after prolonged masturbation when I heard kind of "click" coming from beneath my left testicle.)
I have some questions I would like to ask the group:

1.I have a pain at the area of my left testicle (under it),and as I keep masturbating more then few minutes ,I feel kind of "waves" feeling and a moderate uncomfortable feeling and a bit of a pain in that area.
I have been to a urologist about it but he found nothing.
Does anyone know about it a thing ? what can be possibly done ? shell I limit myself ?

2.Has anyone ever been to a situation of meeting a girl and explaining all of the issue ? have you done so after deeply getting to know eachother or telling this right at the beginning ? what was the response ? how did she react ,knowing you can't have sex with her or at least no penetrative ?

Thanks alot

[Hawk]

Young Peyronies Disease

I offer a suggestion on posting that may help you get answers.

All of your questions are good, but instead of grouping questions on treatment, cause, and psychological issues, all in one post under a catch-all topic like "Open Questions that won't fit under any other topic",  Try asking 1 or 2 questions under "Causes", 1 or 2 under specific treatment methods, and asking relationship or coping questions under "Psychological Aspects".  You are more apt to get responses.  Even more importantly, and the answers will be in a place that makes the forum more useable for all that visit the forum looking for information.

Good Luck

[howcanthisbe]

I have a quick question for anyone who can help. Is there a difference between scar tissue and plaque? Does scar tissue turn into plaque or does scar tissue remain like scar tissue on a normal body wound? Im just wondering because the waisting effect/hourglass effect im having seems to be scar tissue that doesnt inflate correctly, but will this scar tissue turn into hard plaque or just remain a bit unflexible?

[Hawk]

HCTB,

Plaque and scar tissue are both pretty general terms.  Both words have several general uses.  In the case of Peyronies Disease however, the terms are synonymous.   Scar tissue / plaque, can calcify, but that is by no means a certain progression.  As the article that Liam just posted states, it is impossible to guess which plaques may grow, which ones may stabilize, and which one may reduce.  The same is true for which ones may or may not calcify.

[howcanthisbe]

Thanks Hawk. Its just so hard to realize why some scar tissue doesnt harden while others do? Why would scar tissue not continue to harden while others scar tissue does? I do not understand, scar tissue does not harden on the body. Like for instance I have a scar on my foot that has been there for 9 years now and its not hard, its just rough. Why is the tissue in the penis different? I have had this area of scar tissue for around 10 months, I just hope it does not start to harden. Thanks for the help.

[George999]

ALL TYPES of tissue can form scar tissue.  The progression path for SKIN scar tissue is not necessarily the same as that for BONE scar tissue, TENDON scar tissue, or TUNICA scar tissue.  In fact no one ever seems to mention MUSCLE scar tissue.  Perhaps that is because muscle tissue has the unique ability to turn scar tissue into a growth industry.  When you get scar tissue in the muscle from heavy exercise, it in effect, simple turns on the growth process and your muscles not only heal quickly and completely, but gain in mass and strength along the way.  And then of course, there is ORGAN scar tissue which follows its own unique course.  So what we see is that some types of scar tissue, muscle scar tissue for example, is PRONE to heal.  Other types of scar tissue, skin scar tissue for example, are PRONE to remain stable.  And still other types of scar tissue, like tunica scar tissue, are PRONE to worsen.  That doesn't mean they are certain to progress, only that that is the likelihood, given the environment in which they typically develop.  A lot of this has to do with the environment which breeds the scar tissue.  In the case of muscular scar tissue, scar tissue is simply a normal process whereby muscle tissue grows and matures.  In the case of organ scar tissue, scar tissue is the product of some biological process that has gone horribly wrong.  Tunica scar tissue is very close to that category.  There are likely multiple factors behind its development and that is what makes any attempt at curing it so difficult.  It entails isolating and remedying a number of multiple factors simultaneously to potentially achieve a gradual cure.  And since the potential cure is gradual, it is extremely difficult to successfully isolate all the factors fueling the condition.  Skin scar tissue lies somewhere between those two extremes.  It is more common for skin to be scarred in the normal course of life AND it is more common for skin to heal normally and less common for skin scar tissue to progress in an out of control fashion ALTHOUGH that CAN happen.

- George

[howcanthisbe]

Thanks George999, I understand what your saying. I guess its always going to be different also from person to person. Some scare harden some dont.

[bodoo2u]

I read an earlier post where someone said he avoids eggs. I can't seem to find it again and I am hoping that someone can tell me if eggs have an adverse effect on Peyronies Disease. Anybody have any info or know the reason the poster decided to leave them out of his diet?

[Liam]

I would imagine they were avoiding eggs because of the high fat content.  High cholesterol has been linked to Peyronies Disease.

Liam

[Hawk]

One of the benefits of this forum over previous forums is a good search feature.  To be most useful, go to the SEARCH button next to the HELP button.  Type in EGG and click show results as messages.

If you do, you will find no posts discussing a connect between Peyronies Disease and eggs.  I also have never read such a post.  I could give additional comments but since the point has never been seriously advanced, there is no point in dismantling it.

My point is that all members should become very familiar with our search feature.  The few minutes it takes is time well spent.

[bodoo2u]

Thanks Hawk,

I went to another forum a couple of days ago. Maybe I read it there.  

[Liam]

I would imagine they were avoiding eggs because of the high fat content.  High cholesterol has been linked to Peyronies Disease.

Liam

I have come to believe everything ingestible belongs to one of two groups, contributors to Peyronies Disease or treatments for Peyronies Disease.

[Rico]

The new Q & A on peyronies on   http//www.peyronies.org/pages/forum.htm   just came out for Jan and Feb 2007  

Found it interesting that one person said he was on pentox for a year and didn't have good results and if he should just stop it and learn to live with the hour glass and lost of length, the good doctor said, yes, that is a good idea, you won't get back the lost length.....

He doesn't talk about the ved or traction.....

Anyway something to read:)...

Rico

[Liam]

The new Q & A on peyronies on   http://www.peyronies.org/pages/forum.htm   just came out for Jan and Feb 2007  

And I thought I was hopelessly behind.

How would you like to be in their waiting room?

[Liam]

OK  This is an oddball post (even for me )  

I had manipulation under anesthesia (MUA) twice for adhesive capsulitis.  The doctor just rips the adhesions free.  The sound (so I'm told) is like Velcro.  I never asked the doc what happened to the "scar" tissue.  I don't "feel" it.

This leads me to the Leriche technique.  If a discontinuity in the plaque (or whatever ) is introduced, does the body break down and absorb said problem tissue?


Liam

My prayer for the day: Thank You Lord for quotation marks and parentheses.  AMEN

[PainIsGrowth]

I know this forum has a lot of experience with regards to all penile type conditions and treatments, so I thought I'd throw out this question.  The peyronie's like symptoms I currently experience, severe ED, penile length and girth loss, and some waisting/hinging near the base, have arisen after I experienced an episode of idiopathic priapism lasting approximately 6 hours.  Peyronie's disease has the closest subset of symptoms to my condition as any (partially treatable) penile condition I have found.  Priapism damage seems even more bleak with regards to treatment than peyronie's!!  Do you think it is resonable to try and treat the condition the same as you would treat peyronie's?  I'm been taking the pentox, cialis, and l-arginine for around a month and half, but have not seen any positive results as of yet.  In the case of priapism, the main damage comes from hypoxia, cells dying from lack of oxygen, and resultant penile fibrosis.  Shouldn't this theoretically be similar to the damage people experience from peyronie's?  Is the fibrosis of peyronie's typically confined to the tunica, whereas with priapism it is widespread and more within the corpus cavernosa?  I know that healing seems to take at least 6 months on the pentox reports published so far, but I haven't seen any user posts with significant improvement.  There is the one case study Dr. Lue published about a guy who responded very well to it, but took it for over 2 years.  Who on this forum as taken pentox for at least 3 months and seen any kind of progress?  I think we should set up a poll to, like the verapamil poll, to judge the effectiveness of this drug on the forum's population.  Also, any other tips that might assist in treating endothelial damage or tissue damage from the priapism would be much appreciated.  

[Tim468]

Painisgrowth

You are right about the similarity of Peyronies to the penile fibrosis after priapism. The use of pentox, viaga and arginine were shown to be helpful in a case report for two men with priapism. In their case, neither ended up with any deformity, and both were sexually functional, although I think one required viagra (he had required viagra before he developed priapism also), and the other needed a VED to get an erection also (I think!!)(memory is not perfect...). So, these two guys were treated with the drugs soon after developing priapism to PREVENT the fibrosis, and it seemed to work.

Another fellow has fibrosis and calcifications from Peyronies Disease and he got better gradually with P/V/A. It took him a year to make significant gains, and he elected to continue for another year and did show firther improvement.

I think that the VED might make some sense in your case as well as using the PVA cocktail.

I think it is too early to assess the value of PVA here - no one has been on it long enough yet.

Liam - I do not know what happens to the scar tissue after the release - probably it simply stays there, but is not one large adherent mass, so the shoulder has more mobility.

I do not think I would want to allow anyone to wrench on my penis under anesthesia until they heard a sound like velcro! But the Leriche technique may simply allow for more stretchiness of the mass of tissue without actually tearing it asunder. If that happened to the tunica, one would have excessive leakiness (otherwise known as "bleeding") that would lead to vascular insufficiency ED. Not a great outcome.

Tim

[Liam]

Not good at all.

I must admit feeling a bit encouraged by this line of thinking, though. (The part about breaking the plaque loose)

[George999]

I think we are getting a bit off topic in this thread since it is supposed to be a discussion of possible causal factors, not treatment options.  I do wish to say however, that I think there tends to be a fixation on finding 'the magic bullet'.  As much as I hope that something like that will be identified, we are definitely  not there yet, and I would caution anyone tempted to put there hopes in any one treatment approach, whether that is accomplished by taking the PAV cocktail or having your chiropractor snap your penis like they snap people's necks.  There are just all of these options out there from the conventional to the inane.  But no one option is a panacea, at least not yet, and I am not convinced that we will ever find one (I hope I am wrong).  At this point a multifaceted approach holds the most promise.

[Hawk]

I think it is fair to say that at least much of the resulting damage from priapism is in fact triggered Peyronies Disease.  I could be wrong, but one thing is clear, the only study or case history treatment I know of (after getting rid of the erection), is the 3 component PAV combination that you are using.  

I think anything impacting Peyronies Disease will have a similar impact on deformity set in motion by priapism.

[Liam]

I should explain my line of thinking.  I must admit it is convoluted.  By understanding, at a basic level, what happens during the resolution of a similar condition, I was hoping to gain insight into the opposite process in our loathsome malady.

Sounds bizarre.  Next time I'll post under the Psychological Issues topic  

The other posts in Alternative Treatments referring to the Leriche Technique allowed me to see the parallels to MUA for adhesive capsulitis. This caused me to do some backward thinking.  I am not sure it has led me anywhere.  It is a nice mental "jog around the park", though.  (Is that a euphemism for running in circles?)

Hawk,  Maybe I need an "I'll get to the point one day" topic  

Sorry Guys!  And, I thought The Who post would take the hit.  

[Tim468]

Priapism results (sometimes) in fibrosis of the penis, including the corpora cavernosa, whereas Peyronies is limited to the tunica and the midline connective tissue. However, I think the initial site of injury may be different, but the mechanisms of injury and repair (leading to excessive fibrosis) are the same or similar.

Tim