CAUSES of Peyronie's Disease - started 2005

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j

pal-31: Yes, and the bad statistics about Peyronie's are self-perpetuating because they minimimze the problem, which discourages research and investment.  It works the other way, too; when a problem is intractable, it's tempting to miminize it.

George999: I agree that research into fibrosis might ultimately give us a useful treatment.  I continue to believe that AA4500 is going to be at least partially successful.  


Tim468

Every problem we have has a genetic factor at play. I have yet to see a genetic "fix" for the diseases I work with yet, with many working on getting it done. Taking care of the effects and not the "causes" has led to a 20 year increase in life expectancy if cystic fibrosis - genetic treatment is stalled out.

"Hacking" is precisely what we do in medicine and it is fine. We may have high blood pressure for one reason, but treat it by giving a drug that lowers the pressure (via  a mechanism that is different than the one that is causing the hypertension). "Some day" will not come soon enough for two reasons. We are not smart enough and do not know enough yet to play god and "fix" DNA well enough to make most problems better.

Gene therapy for ED has been tried - sticking in more functional cells to produce NO. It is not really a "fix", it is still a work-around. I am interested in any therapy that can help Peyronie's and I bet that would actually be a good thing for fibrosis too.

http://www.nature.com/ncpuro/journal/vaop/ncurrent/full/ncpuro1014.html


Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

jackp

I had a thought (that can be dangerous).
Is Peronies part of the auto immune deceases like arthritis, lupus etc?
Has any study been done to see if men suffering from Peronies and fibrosis to see if it is related to auto immune deceases?
I have osteoarthritis and have been had a couple of false positive test for lupus. Just wondering if others had some of the same?
Jackp

George999

Glycation has long been implicated in damage from diabetes and the aging process, but now it is being implicated in diseases not necessarily associated with either.  For example deterioration of the skin which is as much linked with sun over exposure as it is to the aging process:

Quote from: University of Arizona Life Sciences Chronic exposure to sunlight plays a role in skin aging and carcinogenesis. The molecular mechanisms of photodamage by ultraviolet A, the sunlight's major ultraviolet constituent, are poorly understood. Here we provide evidence that advanced glycation end products on proteins are sensitizers of photo-oxidative stress in skin cells.

http://lifescience.arizona.edu/faculty.php?faculty_id=2810&pub=20553&type=JOURNAL

Additionally glycation is now known to be involved in Alzheimers which occurs at a quite young age in some cases and is not directly linked to diabetes:

Quote from: University of California at Berkeley Neurochemistry The new interest and focus of recent years has been on chemicals called AGEs. These protein modifications have been found to be one of the leading causes of formation of amyloid plaques, neurofibrillary tangles, and activated microglia (Munch et al., 1998). In fact, the discovery of this class of modifications to normal proteins has been very exciting because it can explain many of the biochemical and physiological effects that are seen in AD (Alzheimer's Disease). AGEs are produced in the following manner: the amino groups of proteins - particularly the positively charged side chains - react with reducing sugars like fructose, glucose, and trioses. Notice these biomolecules are normal reactants and products of crucial biochemical pathways in the body, like glycolysis. Through a series of complicated reactions involving both oxidative and non-oxidative pathways, AGEs are formed. The accumulation of AGE-crosslinked proteins is a normal process as we age. However, AGEs have been found to exert adverse biological effects on cells. What has been particularly revealing about AGEs is that their formation is irreversible and they cause protease-resistant cross-linking of peptides and proteins, which leads to protein deposition and amyloid plaque formation (Munch et al., 1998).

http://sulcus.berkeley.edu/mcb/165_001/papers/manuscripts/_898.html

For this reason it is important that we all be aware of this phenomenon and how it can potentially undermine our efforts to rid ourselves of Peyronies.  To this end I have assembled some very informative overviews that I believe you will find helpful in understanding this process and the havoc it can wreak.

The first is a generalized piece from the Linus Pauling Institute:

Quote from: Linus Pauling Institute In contrast to the steady progress in understanding the chemistry and significance of the Maillard reaction in food technology, the potential harmful effects of the Maillard reaction in biological systems were largely overlooked until the discovery in 1971 by Trivelli of non-enzymatically glycated hemoglobin in diabetic patients. Glycation of proteins has been linked to a growing number of diseases and conditions,such as diabetes, cataract, and aging.

http://lpi.oregonstate.edu/fw04/browning.html

The next pieces discuss how researchers are finding ways to stop or even reverse this process:

Quote from: Vanderbilt University Medical Center This process, called glycation, results in large, cross-linked molecules that inhibit normal cell function. In the kidney, glycation can limit the organ's filtering function and lead to kidney failure. After several years of studying matrix changes involved in diseases of the kidney, Hudson was challenged to "do something" to stop the process by a former postdoctoral fellow at the University of Kansas, J. Wesley Fox, Ph.D.

http://www.vanderbilt.edu/vicb/Articles/LensSummer2005/ThinkingOutsideCell.htm

Quote from: Case Western Reserve University Department of Biochemistry The major focus of this laboratory is to evaluate the role of Maillard/glycation reactions which occur between reducing sugars and proteins in aging and age-related diseases. ... These modifications are accelerated in diabetes, end stage renal and Alzheimer disease.

http://www.case.edu/med/biochemistry/faculty/monnier.html

Interestingly, Glycation is even involved in a crucial way with the progression of Multiple Sclerosis.  Note that MS is a classic auto-immune syndrome:

Quote from: Columbia University Health Sciences RAGE, first identified a decade ago at P&S, is an aptly named molecule that plays a role in numerous diseases, including diabetes, atherosclerosis, and Alzheimer's. RAGE, or the receptor for advanced glycation end-products, does not instigate the conditions, but escalates the immune and inflammatory response against the body's own cells and tissues and worsens the disease symptoms. ... Though RAGE had not been linked to multiple sclerosis, Dr. Yan says she and her colleagues thought RAGE might be involved in the disease because RAGE is implicated in several other similar diseases worsened by immune system overactivity.

http://www.cumc.columbia.edu/news/in-vivo/Vol2_Iss05_mar12_03/index.html

Next we have an in depth look at how Glycation causes skin to wrinkle:

Quote from: Cornell Center for Materials Research Another biological threat from energy metabolism is when glucose, a key fuel for our bodies, facilitated by free-radicals, crosslinks with proteins to form plastic-like molecules. These complexes, called age-related glycation end-products (AGEs), irreversibly alter skin proteins so that they are more brittle and less elastic. This is the same chemical process seen in the browning of cooked foods. That's right, our bodies cook as we age!

http://www.ccmr.cornell.edu/education/ask/index.html?quid=1117

Enjoy!  - George

Yet another great glycation page:  http://209.209.34.25/webdocs/Glycation%20Page/Glycation%20Page.htm
And: http://mbceo.com/science/more_information.php?c=Glycation

Dented

I had just came off a steroid I was taking for asthma, Predisone or Pregnazone, I forget. Taking and coming off of this steroid tends to weaken your bodies damage resistance. When I was 14 I tore my ACL in my knee just from doing a basic Karate kick. I got in a sexual accident that I feel would have been more minor or even non exsistant had I not just come off the steroid.

I't must be hard for you guys that have Peyronies Disease come out of nowhere, but for me I keep thinking "if only..." I have it pretty bad too. While I do have a minor (almost natural looking) upward curve. I also have a dent on one side, which isn't too bad when I am fully erect. and basically my penis always feels weird and unnatural. erections are not as enjoyable. I didn't sustain any significant nerve damage though.

How did you get Peyronies Disease?

boldrum

Interesting. Not sure how I got "It"
Life was good then about 16 months ago I awoke to a very painful erection. No curve just pain and a small palpable hard knot on the top of my penis about mid shaft. Pain subsided in flaccid state. The painful erections continued for about the next 3 months during which time I visited a urologist.  He suspected Peyronies and started me on PABA. Took this as prescribed. As the painful erections diminished a curve developed. I thought "OK, I can live with the curve. No problems getting erections but the curve is like a hinge that is very frustrating during intercourse. I do not look for a cure anytime soon although that would be great but being able to provide a satisfying and somewhat natural sexual experience for my spouse is so important to my psychological well-being.
Nope, fortunately I won't die from "IT" but it sure as hell can devastated one's sense of maleness. Woops, that should draw a response from the androgynous politically correct. I hope to see responses in this forum from those individuals or couples that have sustained or even enhanced their physical relationship in spite of Peyronies.

Tim468

>>Nope, fortunately I won't die from "IT" but it sure as hell can devastated one's sense of maleness. Woops, that should draw a response from the androgynous politically correct. <<

You must be new here. We all "get" that one. Been there, done that.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

fade2black87

I've got a pretty deep question for you guys (hawk, tim, oldman) who have a pretty long run with peyronies or a very deep understanding. When Peyronies "reactivates" after a long period of stabiliztion (a few years atleast), is this due to an original plaque becoming active again, or would that have to include the development of new plaque? I guess my question is, do peyronies plaques usually run a course such as going through a changing active phase, and then finally reaching a mature stable phase where they stay unchanged? Or is it possible for them to stay stable for years and then just suddenly start changing again without any reinjury?

If you think about how scars mature it would make more sense that a plaque would run through its phases than then, at some point, become stable when they reach maturity. One would think that the tissue would have to be reinjured to some extent for the plaque to reactivate. Is this completely off? what do you guys think?

Tim468

I had a very gradual change to the tunica along the dorsum (top when looking down) of my penis over many years. I gardually developed a cord like thing that ran the length. I also developed a very gradual narrowing of the tip (maybe last third?) that led to s perceptible (to me) tapering of the end of my penis. This happened gradually over many years - it never felt either stable or unstable - it was that slow. I DID feel like i knew when it was active and happening - hard to explain.

Then, I developed several new dents along the side, all on the left side in the last few years.

So, for me, either can seem to happen. New things come along, and old things gradually can change.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

Quote from: fade2black87 on February 16, 2008, 11:13:09 PM
When Peyronies "reactivates" after a long period of stabiliztion (a few years atleast), is this due to an original plaque becoming active again, or would that have to include the development of new plaque?   ... One would think that the tissue would have to be reinjured to some extent for the plaque to reactivate. Is this completely off? what do you guys think?

F2B, first I want to point out one faulty premise in the second part of your quote.  "Injury" is not known to be a required trigger to set off the cascade of events known as Peyronies Disease.  Therefore we must conclude that "reinjury" is not a necessary trigger to reactivate Peyronies Disease.   The remaining question is what activates, new or existing plaque. I do not know that there is a urologist in the world that can answer such a very basic question.  This illustrates one of the reasons we exist, trying to dig out, and stumble across answers that no one manages to provide.  It is only a perception on my part, but I suspect that Tim is correct, that it is an "either/or/both" situation.  Can the edge of an existing plaque activate?  Can a new plaque form right against an existing one?  Can a distant plaque start?  I am guessing the answer to all 3 questions is yes.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

F2B:

I don't entirely disagree with Hawk's viewpoint that injury cannot cause Peyronies Disease. The reason I state this is that I had no Peyronies Disease symptoms until the shaft of my penis was literally "broken" as diagnosed by my uro. He stated that the erectile tissue/tunica was most likely torn to some degree during the mishap that caused the penis to bend awkwardly and as a result all the nodules, plaque and later resulting dents along the shaft on both sides.

All of the above happened when I was 24 years old. Since that time, many treatments up to and including 12 Verapamil injections. These injections gave me a nodule for each and every one. Whether or not one could cal the resulting nodules injury or not is a good question. All I know is that every shot gave me another one to deal with in some manner. Finally, I told my uro enough is enough so I quit getting them.

Later, Peyronies Disease came back again as a result of a radical retropubic prostatectomy. My uro and I concluded that this bout of Peyronies Disease was a result of getting rough treatment during surgery and insertion of the catherter. Who knows?

The above is just some of the events during my 54 years plus of Peyronies Disease battles. You can use this information in any manner since I have no clue as to whether or not injury can or will cause Peyronies Disease.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

robwbright

Fellows:

I am an attorney who has 3 clients with Peyronie's as a result of the actions of single urologist in doing cystos.  I've done a lot of research on this issue.  Peyronie's can be caused by trauma from a cystoscopy, catheter, radical prostatectomy, etc. . .

Here are some links and cut/pastes for you:

http://www.uclaurology.com/conditions/Peyro27.cfm

"Cases that develop suddenly are often caused by trauma to the penis (e.g., invasive penile procedure, injury, extremely vigorous sexual activity). Invasive penile procedures include urethral catheterization, cystoscopy, and transurethral prostatectomy."

http://www.aafp.org/afp/990800ap/549.html

"Many patients recall an episode of penile trauma, such as an invasive procedure. . ."

http://www.ncbi.nlm.nih.gov/pubmed/9636000?ordinalpos=15&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

"Patients who underwent invasive procedures on the penis (i.e., urethral catheterization, cystoscopy, and transurethral prostatectomy) had a 16-fold increased risk for Peyronie's disease (OR = 16.1, 95% CI: 1.8-142). . ."

http://www.ncbi.nlm.nih.gov/pubmed/16469028?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

"From the multivariate logistic regression analysis the risk factors for Peyronies Disease were: a history of genital and/or perineal injuries, transurethral prostatectomy, cystoscopy, diabetes mellitus, hypertension, lipoma, propranolol in therapy . . ."

http://www.drmirkin.com/men/7538.html

"A recent study from Aviano, Italy shows that the most likely causes are infection and trauma (1). Men who have had a tube inserted in the bladder by a doctor are 16 times more likely to suffer Peyronie's disease."

http://www.phoenix5.org/sexaids/basics/penile/peyroniesRPlink.html

"In a new study, led by Jarow and Patrick C. Walsh, M.D., that will include 100 patients, 3 out of 64 radical prostatectomy patients so far have developed "rapid appearance of new-onset Peyronie's disease" after surgery, says Jarow. "This sounds very low. But if you compare that to the incidence of Peyronie's disease in the general population, it's 1,000-fold greater."

Tim468

Rob

See my other response. IT seems that the primary theory of causation is trauma. Cysto represents trauma and carries a risk of this bad side effect.

To say that it is malpractice suggests that the risk outweighs the benefit. From the info you shared here it seems like the cysto was botched. So the issue is "Does doing it badly increase risk"? The answer seems to be yes intuitively. Might be harder to get someone to say that in court.

But you have some powerful testimonials to the practice style that suggests this could settle in your favor or that you could prevail in court. Good luck.

Tim

ps - a junior faculty member with high debt, and not in the local community would be a good choice for expert in court. They are paid less than private practitioners and more willing to think critically. Even if the title is "Assistant Professor"m the jury will hear "Professor"
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Ptolemy

The following is from one of the links from robwbright

Cases of Peyronie's that develop over time may be caused by an inherited abnormality of human leukocyte antigen B7 (HLA-B7), suggesting a genetic link. Also, Peyronie's occurs more frequently in men with family members who have the condition or a connective tissue disorder (e.g., systemic lupus erythematosus). About 30% of patients with Peyronie's disease also develop hardened tissue in other parts of the body, such as the hand (e.g., Dupuytren's contracture) or the foot.



I have the HLA-B27 genetic marker, plus I've had surgery on both shoulders and both elbows (a lot of sports creating connective tissue disorder) plus I have DISH (Diffuse Idiopathic Skeletal Hyperostosis) a degenerative type of arthritis with calcification along the sides of the vertebrae and even bony ridges (tori) on my gums - more bone growth. It's probably all related.

It sounds worse than it is, just pain with limited flexibility in the spine - not great for my golf swing. I guess the good news is if something can be found to fix one of the problems it may benefit all.

Hawk

I do not discount the possible connection with some or all of these diseases BUT,

I have been told by orthopedic surgeons, one of whom is a close friend, that you cannot find a man or woman that is in their 50's that does not show arthritis of the spine.  Some are symptomatic with only slight progression.  Some show significant arthritis with few if any symptoms, but arthritis is the rule not the exception.

I do think the link with Dupuytrens, and even frozen shoulder is a bit more of a direct correlation.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

I think it is also important to understand that in most cases genetics are not in and of themselves the cause of diseases, they are rather weak links that can be exploited by those diseases in the right circumstances.  And I think that distinction is important, because it challenges us to take action in an attempt to mitigate those vulnerabilities.  In terms of genetics, the bottom line is usually that how one prevents or treats a given disease does not change due to the fact that they may have some genetic vulnerability to that disease.  You can't change your genes, but you can often prevent diseases they might bring your way.  - George

docholiday

Hi guys, new here.  My story eve of Thanksgiving this year I hurt my penis having sex.  The girl forgot to tell me she had a tampon in.  Anyway went to my GP and he immediately diagnosed me with peyronie's because i had pain in my shaft. No plaque, curve or painful erections.

Well since then I found a great urologist who performed two ultrasounds on me one in january, one a week ago in march, both turned up negative (good negative).  My penis does not bend, no painful erections, though sometimes I feel sore when flaccid, and little discomfort here and there on a scale of 1-10 10 being most pain it is like a 2 maybe 3.

The probem with me I guess in the psychological effect of being diagnosed and learning of this disease and the apathy of the medical community.  So I have a few questions and you guys appear the most informed and experience usually is the best teacher so here they go.

1. Is masturbation dangerous?  I find now that if I masturnate in the morning I'm afraid to do it again that night because I heard too much may cause it, but what the hell is too much?  I would think as long as I'm using lube and not any strange apparatus, or abnormilly bending it I shouldn't feel at risk.

2. How much is genetic/autoimmune factor play a role along with age.  I am 29 and no one in my family (and it is a big italian family) has any history of this, dupreytn (can't spell it now) frozen shoulder, or even really athritis.

3. Would the trauma have to involve internal bleeding?

Thanks in advance you see I am 29 and suffer from anxiety on medications (wellbutrin) what I am going through now is similar to years ago when I learned condoms did not protect against herpes and everytime I slept with someone I thought I got it, well now even if I masturbate I'm afraid I might have gotten it.  As far as masturbation goes what would be worse three times a day with lube with each episode lasting 2 minutes, or a hand job from a girl for half and hour?  See I'm even afraid for a girl to touch it now.  The stress has given me a mild case of ed (but like this morning I woke up with a rock hard erection) so I'm very confident it is a psychological cause.

My theory based on countless internet research and reading your posts and peyronie's associates terms of "succeptible" is that a man who has a genetic disposition can have this disease triggered by almost any action (masturbation, medications, catheters, etc) but those without the genetic component would require serious trauma like a penis fracture or some serious pain that they would remember, and cause blood vessel damage to trigger the disease.  Again I am not saying I know anything, just asking.  My family wants me to move on and get my life together, but for someone who has anxiety to be diagnosed something like this that they actually don't have it has been a hard time for me to get my life together.  Especially since the orignal doctor had no real evidence to diagnose it.

Tim468

Well, DocHoliday, it seems that the best data that you have is that you do not have Peyronie's Disease. You have had more ultrasounds than many men here with Peyronie's Disease (obvious palpable plaque and a deformity) - which is none.

Yet still you are going to worry - presumably because of your problems with anxiety and because of the persistent pain.

From my viewpoint, you are in a good place. Time will help you sort out if this is Peyronie's Disease or not. It sounds like it is not. Pain almost always goes away, and when it does not, then it can be treated by anti-inflammatory drugs and supplements like Mangosteen. Many of the supplements that are tried here (without much "success" frankly) might do you a world of good.

I'd take L-arginine (about a gram or more a day) for three months, take Advil for discomfort, and lay off the frequent masturbation. It seems that you do not have a problem getting hard, and there is no reason to masturbate 2-3 times a day (even though I no longer CAN masturbate that often, I am very grateful that I do not value doing it that often either)(I guess I could force myself to do so if I had to...). It is not that you are going to damage it, but that you are going to continue to promote a penis-centered way of viewing yourself that is not healthy emotionally. It does not usually promote emotional healing, which seems to be more of what you need, since physically, it sounds like you are on good shape.

As we often find in young men who come here very concerned about maybe having Peyronie's, there is a lot of obsessive thinking about their penis, and less objective data of something being wrong. Therefore, moving away from activities that promote obsessive thinking about it (like squeezing one off every time someone leaves the room) will probably be helpful.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

docholiday

Thanks Tim, see I have only masturbated since the last ultrasound so I am just still feeling anxiety if masturbation alone can cause peyronies.  Some sites say no, some say yes, just trying to get some kind of answer.  I don't want to ask for another ultrasound so I can get back to square one if I am ok, or if a I should have anything to fear.  The penis does not feel hard , just some soreness and redness on the skin.  I wish the dr. had never mentioned it since he really had no grounds to but he did and I have fallen into a pit of depression and anxiety everytime I touch it, which makes me touch it more to test it.  I trust you guys who are experiencing it more then any doctor these days, since most of them could give a crap about the emotions of their patients, just pleasing insurance companies, thanks in advance.

Hawk

Masturbation cannot cause Peyronies Disease.  Out of 1600 members, I do not think anyone here would disagree.  If they did, the weakness of their position would be quickly exposed.  Of course masturbation with a hammer can cause Peyronies Disease just like sex with a tampon in.  Reasonable sex is fine (even healthy).  Rough sex of any kind is risky.

Even if you have Peyronies Disease, everything works so try to be content to take care of it and take a few sound steps as Tim advised.  Concern is normal.  Your level of worry is not.

Docholiday, the worries you are describing are clearly obsessing.  It is the nature of obsessing that it rejects sound reasoning so what we say will likely make little difference.  I suspect that even I it did, that you would find some other object to hang your worries on and simply trade a new obsession for your Peyronies Disease obsession.  You must deal with the challenges of obsessive thinking and behavior.  I know this is easier said than done but that has to be part of your overall plan.

Good Luck





Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

docholiday

Thanks guys for your information.  I talked to my urologist today and asked him because he said too much masterbating can give u peyronies, so I was like what do you mean by that, too much in a day, a month a year?  What is too much?  So he was like you shouldn't masterbate more then once a day do it when you
re honry (which is true) But what I then asked was like I wanna get on with my life so like if I'm with a girl and she gives me a handjob for 20 minutes and I more or less at risk then if I masturbated 3 times in a day, but taking up a total of 10 minutes.  He was like: well if she's rough.  The bottom line is you don't want to cause trauma, whatever causes trauma can activate it.

So I guess from that and you're posts is that it is not the frequency that is a tell-tale sign, but bottom line if you injure yourself and cause trauma.  You can jerk it three times a day and be fine, then do it once a week and if you hurt yourself cause it.  Though really I would guess it would have to be dramatic bending or twisting not a natural lube and slide.  I mean if I get this from masturbating so be it, from sex so be it, I can't live in fear.  I'm going to leave it alone for a few days to get my head clear, taking the advice from my doctor and tim and hawk for that sake, and get some perspective.  But no I don't fear masturbating can cause it anymore then foreplay.  I think it is like something Hawk might have said in earlier posts, people notice it while masturbating and put two and two together, but you get this either naturally (genetically, immune deficiency) or trauma, and masturbating normally will not cause the trauma.  No maybe if you did it for ten hours a day for a few weeks yeah, you'll grind it down to nothing, but I think the only harm in jerking it too much is mentally, and biochemically the ejaculation part of it, can lead to weak erections, fatigue or low sex drive, just cause I noticed if you go a few days and then play with it, it does get harder quicker and is of better quality, and ur testicles do start to hurt.  Thanks for all your help guys, and if later in life I develop this disease I know already there are some good people out there I can talk to.
Doc

George999

Two things here.  1) You need some psychological or spiritual help with this, and 2) you need to change urologists.  Honestly, IF your urologist really told you this in this way, you need to find another urologist.  Those are my thoughts on this.  - George

ThisSux

Hawk and George,

I do not think it is responsible to make blanket statements like "Masturbation cannot cause Peyronies Disease". Things are not this simple.

My original injury was from masturbating a couple times in a row during a particularly shall we say "horny" period in my life. The second time I was not fully erect and must have caused some tissue damage. I was sore for a couple days...and then months and then plaque showed up.  That's it. It wasn't  from a zig zag injury, or from a particularly rough experience etc.

Now it is extremely likely that I have some sort of genetic predisposition or other condition and perhaps it would have been triggered without the injury after years of microtrauma, but triggered it was, just as I describe above.

I have had pain on a nearly daily basis for a couple years now...and my peyronies has been confirmed by Dr. Mulhall.

So it looks like docholiday's doctor might not be so bad.

Just my 2 cents.

Hawk

I did not make a blanket statement.  I conceded masturbation with a hammer could cause Peyronies Disease.
Translation, any abnormally rough or abusive sex/treatment of the penis could trigger Peyronies Disease.

You can break a penis by missing and thrusting with all your might into a thigh muscle of a woman on top as she comes down full force.  You cannot use this however to say intercourse causes Peyronies Disease.

Abuse of a penis during intercourse, masturbation, penis enlargement, sports, or any activity can trigger Peyronies Disease.  Since virtually every male engages in some of these activities it is clear these activities DO NOT in and of themselves cause Peyronies Disease.  

Peyronies Disease is a process:
It is caused by some combination of complex factors dealing with abnormal collagen production that overuns NORMAL tissue.
If these factors are present in a dominant way Peyronies Disease can start with virtually no triggering event.
If these factors are present to a lesser degree it takes a more obvious triggering event
BUT, the event does not cause Peyronies Disease, and anyone that gets Peyronies Disease while practicing normal non-tramatic use of a penis was doomed to get Peyronies Disease with or without using the penis.

Philosophical question: It is better to have an seemingly healthy penis you cannot use because use causes Peyronies Disease, or use it and get Peyronies Disease which in turn may diminish how you can use your penis?
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

I agree with Hawk on this.  There are probably a thousand ways one could injure their penis, and masturbation is certainly one of them.  But it is not the AMOUNT of masturbation, but the intensity.  Any doctor who claims it is the AMOUNT of masturbation that is responsible for Peyronies needs his head examined as badly as his patient might.  Unusually rough masturbation certainly could cause Peyronies in a susceptible individual, but that does not mean that typical masturbation would or even typical intercourse.  Of course there is always the exception of the individual who is so sensitive that any amount of "touching" of the penis could cause Peyronies.  The point is, it is not the masturbation that is the problem IN THIS CASE, and masturbation should NOT be a focus in terms of treatment.  I think this is close to the point that Hawk is making and I think any good urologist would agree with that point.

A second point here.  I think some people are blinded by their religious convictions on this subject.  On this level I think it is perfectly fine to warn someone that masturbation as a practice is not good for their spiritual health, but to tell them that it will cause them to go blind or cause them to have Peyronies is over the top especially if the person involved is a medical professional.  There is simply NO scientific evidence for these types of terrifying claims and no spiritual foundation for making them either since they amount to misinformation at best and lies at worst.  Again, we are not talking S&M here, we are talking simple generic masturbation.  It is not only physically harmless, but there is significant evidence indicating it might be physically beneficial.  It is certainly far less risky than casual extramarital sex.  - George

docholiday

so I guess it is not the frequency, but the intensity and also if the individual is succeptible if that is also in fact part of the cause?

Hawk

First, I edited my last post extensively while George was posting.

To answer the question on masturbation causing Peyronies Disease:  The entire question is just plain ridiculous.  


Loraine Bobbit cut off her husbands penis and dove off, later throwing the penis into the street.  The cops came along, answered the call, eventually found the penis.  It was sewed back on and is functional with no Peyronies Disease.

Question: Does masturbation cause Peyronies Disease?  What do you think?

Even if it did, what good does it do to have a seemingly healthy penis that you can't use as a penis, meaning typical, physically non-traumatic sex.  If a penis cannot be used for normal non-traumatic sex, then it is worse than Peyronies Disease.  I do not even understand the premise of this train of thought.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

All men have sex which includes stimulation of the penis.  All men have routine stimulation by someones hand.  Over 90% never get Peyronies Disease.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ThisSux

Guys, I think you are all misunderstanding my point.

I am not saying "masturbation causes peyronies disease", I am simply noting that what is normal for most people (such as masturbating several times in a row? having sex several times in a row?) could in theory cause a flair up or initiate the chain of events that leads to peyronies in those that are susceptible.  Isn't this the whole theory of microtrauma and abnormal scar healing?

My experience was not with rough, abnormal, abusive (and so on) sex, it was with what someone not predispositioned to peyronies would consider normal.

My only point is that those that are susceptible to peyronies should be careful and in my opinion should not engage in sex several times in a row (based on my experience and also it seems on docholiday's doctor's exp), in addition to the normal advice that is given such as "if it hurts, stop".

This has nothing to do with religion (where did this even come up?), it all has to do with mechanics and trauma. IMO a hand is more likely to cause trauma than a vagina so one should be careful (not abstain, but be careful). Of course this is only helpful to those that already know they are susceptible.

Hawk,

And to answer your last point
Quote"BUT, the event does not cause Peyronies Disease, and anyone that gets Peyronies Disease while practicing normal non-tramatic use of a penis was doomed to get Peyronies Disease with or without using the penis. Philosophical question: It is better to have an seemingly healthy penis you cannot use because use causes Peyronies Disease, or use it and get Peyronies Disease which in turn may diminish how you can use your penis?"

If the event had not occurred, my peyronies would not have been triggered then (maybe later... but not then). It would be nice to have the least amount of time possible with peyronies. So do I wish I had avoided this extended masturbation session? of course! is there any way I could have known? NO! since for nearly everyone else it is not a problem. Will i repeat this again now that I know it is a problem for me? HELL NO!


Tim468

I think that ThisSux described the notion that masturbation can trigger Peyronie's Disease quite well. I have heard of guys who are frankly really rough on their penises and they then get Peyronies. I have also gone over to the Penis Enlargement sites and hear of routines that are very rough - and they don't get Peyronies.

In my case, it just started gradually, and has been gradually progressing ever since. The rate has been so slow as to be imperceptible for many years, but I know it is different now than it was when I was twenty. I never identified an "injury". Later along the way, though, I did suffer an acute bend that led to more rapid porgression for a while, and seemed to be stopped by Verapamil iontophoresis.

Two notions emerge for me. First, when we try to understand "why" we run the risk of blaming - either ourselves or others. We can blame or resent a woman, or ourself, and that will lead to needless emotional suffering.

Second, we work so hard to find the *trigger* that we forget that it is not the trigger, it is the underlying predisposition that makes us develop this. So one way or another most of us come to understand that we need to take gentle care of our penis to keep it healthy. Lucky for them, most men never have to learn this.

Trying to properly identify the trigger can detract from our understanding why we are the ones who go on to get Peyronie's when other men do not. But it is worthwhile if it helps us figure out what to do differently in our sexuality to stay healthy. This is particularly poignant to see for me, when I see young men here trying desperately to be hypersexual to feel good about their penis, when all they are doing is increasing the risks of getting worse.

In that way, Hawk, I do think that masturbation can be a risk. We have seen guys here who are getting worse and are pounding away like there is no tomorrow - because they believe that there IS no tomorrow (or that whacking off will reverse the disease). For the, this is an important concept to get - that giving it a rest can have physical and emotional value, and might promote healing. That (for me) is the power of the VED. It allows me to stretch out my penis tissue without constant need to be sexually aroused  - and that in turn lets me view it as self-care, instead of the more emotionally difficult place of being sexual when I feel damaged.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

docholiday

Ok, so to get some idea about this disease, would it be safe to say that you guys feel the people who get peyronies, have something in their system that makes them succeptible (insulin, dna, chromosome, genetics) I'm not asking what no one knows, but is that what most think and then trauma triggers it, or do you think anyone can develop it? (Not counting ridiculous trauma situation like a full blown penis fracture or something like that).  But anyone can develop it through masturbation, prescriptions, catherer, etc.

George999

doc, I am speaking for myself here and not for the group.

1)  First of all, I believe that Tim is correct in his recent post.  Common sense always applies.  And when it comes to common sense, in most cases, if it hurts, don't do it and if it hurts don't keep doing it.

2)  My personal opinion is that the penis of a healthy individual with no underlying factors can take an unimaginable amount of abuse without suffering permanent damage.  Tim's Bobbit example fits in here.

3)  It is also my personal opinion that there are probably multiple underlying factors involved in Peyronies.  These would include:

A)  An inherited genetic weakness
B)  Genetic damage/alterations resulting in tendency toward glycation due to metabolic factors resulting from long term diet/exercise/lifestyle issues.
C)  A triggering trauma induced by anything from physical injury to even something like a viral stimulus.

4)  Certainly I DO NOT think that just anyone can develop Peyronies.  It results from a confluence of multiple factors and once it causes tissue damage, it is extremely difficult to reverse, let alone cure.  That is why it is important to stop it and to attempt to correct the factors that caused it BEFORE it becomes advanced.  Again, this is MY opinion and not necessarily that of "the group".  - George

George999

I think it is really important now and then for the sake of the new readers here to emphasize the point that most of us, including myself, ARE NOT doctors or medical professionals.  What we do have in common is that we all suffer from Peyronies to one degree or another.  All of the information that you find on this forum should be taken in that context.  At times I think the information we submit can serve as a warning flag that perhaps you might want to get a second opinion.  I also think that the information posted here can help you to know what kinds of things to ASK your doctor and what kinds of things might be helpful in terms of complementary therapies.  But nothing on this forum should be substituted for a professional opinion from a licensed and qualified medical professional.  Like the previous post, I submit this as my personal opinion, but I believe that in this case it would be quickly seconded by most of the people in the group.  - George

Hawk

It is getting difficult to continue this discussion without repeating myself.  I agree with George.  I agree with most of what Tim said.  I agree with what I said.

Quote from: Hawk on March 18, 2008, 04:14:36 PM
I did not make a blanket statement.  I conceded masturbation with a hammer could cause Peyronies Disease.
Translation, any abnormally rough or abusive sex/treatment of the penis could trigger Peyronies Disease...
Abuse of a penis during intercourse, masturbation, penis enlargement, sports, or any activity can trigger Peyronies Disease.  

People that pound a semi-erect penis for hours are not masturbating.  They are engaging in obsessive abuse of their penis IMHO.  Based on my statement above that could trigger Peyronies Disease.

Quote from: Hawk Peyronies Disease is a process:
It is caused by some combination of complex factors dealing with abnormal collagen production that overuns NORMAL tissue.
If these factors are present in a dominant way Peyronies Disease can start with virtually no triggering event.
If these factors are present to a lesser degree it takes a more obvious triggering event

Based on these statement normal gentle intercourse can trigger Peyronies Disease if conditions are right. (since virtually no trauma is associated with most Peyronies Disease )

My guess is that ThisSux masturbated thousands of times without getting Peyronies Disease. Find Peyronies Disease after one session and A causes B.  Maybe someone can calculate the number of normal non-abusive masturbations sessions that have been engaged in without any sign of Peyronies Disease.

I am sure someone ripe to start a Peyronies Disease rampage got it after shaking his flaccid penis after urinating.  Peeing does not cause Peyronies Disease.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ThisSux

Tim,

That was very well put. I agree completely and you said it much better than I was able to.

Hawk,

QuoteMy guess is that ThisSux masturbated thousands of times without getting Peyronies Disease. Find Peyronies Disease after one session and A causes B.  

You have the wrong idea I am afraid. This is not a matter of finding peyronies after one session and confusing correlation with causation. This is an extended session (that was unusual for ME but certainly not abnormal in general) resulting in  immediate pain/soreness upon completion that did not go away for weeks, and when it finally did resolve there was plaque present. As I said, sex/masturbation two times in a row was not normal for me but certainly not abnormal in the general population and generally does not cause/inflame/set off  peyronies disease otherwise there would be many more of us!

I am not sure what more I can say. The above is exactly what happened. There was no time to confuse anything as it was one continuous experience from moments after ejaculation to plaque formation.

I never claimed this caused peyronies disease nor did I suggest it would do so in the general population



docholiday

Again who am I to say, but it seems to me those cases that say Peyronie's was from masturbating were sessions that lasted for a long length of time (like hours) well past the refraction time.  Which I have never gone past my orgasm.  So those sessions were only a few minutes.  Am I out of the woods definetly no, no man is but I am a little less concerned.  I feel though that if the trauma of se with a tampon did not cause it maybe masturbating won't.  Again masturbation is probably a trigger, just like getting kicked in the balls or something, but not an actual traumatic event like a penis fracture or something that breaks blood vessles.  I think those incidents put more of the male population at risk.  Too many men jerk off, too many times to seriously say masturbation my give you peyronies.  

Also I hae seen some people say the got it after just one masturbation session when they were sore or stressed out, so I think to say over-masturbation is a cause is false since like George said the frequency migt have no effect, but masturbation could trigger it, if the individual simply just needed a trigger.  Thanks guys again I'm just trying to get on with my life.

Tim468

The simple fact is that we do not know. Thia makes for good fireside chat, but it doesn't get us very far towards getting better, IMHO.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

docholiday

Hi guys,

well I had another ultrasound, no signs of scaring or peyronies.  I had sex and it worked fine, also I have low testosterone so that could be affecting morning erections and erections quality in general.  My only pains are in prostate and urethra--does this sound then maybe like prostatisis since i masturbated a lot and have been under a lot of stress.  This is what I think seeing what you guys have to say, thanx in advance.

jackp

Doc
You said that you had a ultrasound. Have you had a color Doppler?
Low testesterone (T) is the pitts. Mind dropped as low a 120 (range 240-850) and I felt lousy. I now get 300mg shots every 10 days.
T replacement will make you feel better, increase libido and help with weight loss. It will give you a temporary lift in the sex department.
The only thing that will make you discouraged is the help in the sex department is short lived. Once the body adjust to the new higher level the ED will not get better. (Been there done that.)
T gels are not for everyone. Personally it did not work for me. Made my blood too thick and did not absorb through the skin properly. Switched to shots and feel much better.
You know I rant against injection therapy for ED. In my case it caused fibrosis in the corpora's and because of the fibrosis caused a puncture of the urethra during the implant surgery last October.
Because of the Peronies and now fibrosis I lost 1.25 inches. I am in the process or rehabilitating the penile fibrosis with the VED. Thanks to Old Man he got me on the right path.
Stress and BPH are erection killers. The meds that doctors give for BPH also can cause erection problems. Flomax and others caused me problems. Switched to Saw Palmetto and in 3 months no more prostate problems.
If masterbation causes Peronies a lot of us are in serious trouble. As far as I can remember I did not have any injury to the penis before the Peronies.
Lots of Luck, get that low T taken care of. You will feel better.
Jackp

docholiday

thanks, yes it was a color doppler, and I am taking saw palmetto now.  I think the prostatisis is due to the stress of thinking I had peyronies, because one uninformed doctor diagnosed me with it months ago, and too much masturbating to test it.  For my low T I'll just have to see what treatment works the best but I think im going to start with testim.  More of an effort will be to get rid of the prostatisis the non-bacterial there seems to be no cure.  Any luck with what works for BPH?

Tim468

As I suspected, you do not have Peyronie's. I suspect that you do not have prostatitis either.

Drink lots of fluids and keep things flushed out. Try saw palmetto - it won't hurt you. I would try Testim only if you do not show sontaneous recovery of your T levels. Remember that when you start it you are going to have a lot harder time recovering your T levels spontaneously (Testosterone turns off your own natural production).

Again, addressing the anxiety issues is more likely to lead to a healthy sex life than drugs, surgeries or supplements.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

Profibrotic Role of Myostatin in Peyronie's Disease

Quote from: The Journal of Sexual Medicine Results. A threefold overexpression of myostatin was found in the Peyronies Disease plaque as compared with the TA.

The main message here is that medical science is moving like never before to unlock the secrets of Peyronies Disease.  That is good news for all of us!  - George

Iceman


Tim468

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 TGFβ1. Myostatin or its cDNA construct increased the myofibroblast number and collagen in TA cells. Myostatin was detected in the TGFβ1-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 TGFβ1 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 TGFβ1, thus suggesting that both proteins act concurrently and that therapy should target their common downstream effectors.

Another good article out of LA.

I am not sure what the "common downstream effectors" are - I will try to get a hold of the full article but it is not a journal that usually goes with my online privileges.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

crank

Quote from the Boston University Medical Center website:

"The hypothesis is that Peyronies Disease is traumatic arthritis of the penis."

Hmm..At age 72, I have arthritis in my neck and mid-back from old injuries..and in my hips from wear and tear from over 20 years of recreational running..Now, I have arthritis of the penis presenting itself with the upward bend..If the hypothesis is correct..

Any comments on the BU description of Peyronies Disease ??

crank

George999

Quote from: crank on July 07, 2008, 07:40:35 AMAny comments on the BU description of Peyronies Disease ??

I have been asserting for sometime that all of these degenerative diseases are inter-related.  They all exhibit common threads of inflammation, glycation and calcification.  - George

ThisSux

Quote from: Ptolemy on March 10, 2008, 02:50:15 AM
The following is from one of the links from robwbright

Cases of Peyronie's that develop over time may be caused by an inherited abnormality of human leukocyte antigen B7 (HLA-B7), suggesting a genetic link. Also, Peyronie's occurs more frequently in men with family members who have the condition or a connective tissue disorder (e.g., systemic lupus erythematosus). About 30% of patients with Peyronie's disease also develop hardened tissue in other parts of the body, such as the hand (e.g., Dupuytren's contracture) or the foot.



I have the HLA-B27 genetic marker, plus I've had surgery on both shoulders and both elbows (a lot of sports creating connective tissue disorder) plus I have DISH (Diffuse Idiopathic Skeletal Hyperostosis) a degenerative type of arthritis with calcification along the sides of the vertebrae and even bony ridges (tori) on my gums - more bone growth. It's probably all related.

I just want to note here that I too have the HLA-B27 marker (oh joy)... and am currently in a wait-and-see stage to see if I have a form of reactive arthritis (reiter's) or Lupus (great...yes some men do get it sadly). I have had a host of odd symptoms over the years and my rheumatologist thinks they are mostly related. I didn't ask about peyronies but will be sure to mention it next time I visit his office.

Hawk

Quote from: crank on July 07, 2008, 07:40:35 AM
Quote from the Boston University Medical Center website:

"The hypothesis is that Peyronies Disease is traumatic arthritis of the penis."

Hmm..At age 72, I have arthritis in my neck and mid-back from old injuries..and in my hips from wear and tear from over 20 years of recreational running..Now, I have arthritis of the penis presenting itself with the upward bend..If the hypothesis is correct..

Any comments on the BU description of Peyronies Disease ??

crank

I do not dispute the statement by Boston Univ.  I only point out that there is likely not a man over 60 on earth that does not have arthritis of the spine (according to my orthropedic surgeon)., so I would be careful about connecting those two conditions in any one individual.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tim468

The Boston University Medical Center statement is an oversimplification that does not help shed light on the truth. It is, instead, an attempt to make easier to understand a process that is currently poorly understood.

Arthritis is a disease of joints, which have different tissue types than the tunica of the penis. It is neither helpful or worth discussing in terms of mechanisms of disease, IMHO.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

Actually, It would probably be just as accurate to say that cataracts is arthritis of the eyes.  I *think* what Tim is trying to say here is that you are dealing with a major generalization which therefore means it is of little use in terms of current approaches to treatment in a practical sense.  But I do think that there are underlying common factors which are very much worth attempting to deal with.  For example, all three feature inflammation, glycation, and potentially, calcification.  I think that the main reason that physicians are reluctant to venture into this area is that there are currently no drugs or techniques to attack that process directly.  However, the first of those drugs IS on the horizon in the form of Alagebrium which should prove effective against arthritis (both rheumatoid and osteo), Peyronie's, and, yes, cataracts.  Alagebrium will be followed in quick succession by a number of other drugs in development targeting glycation.  This will bring relief to sufferers of a broad range of conditions which will bring a major sea change to medicine, which today is patterned upon treating individual maladies rather than targeting their common roots at the molecular level.  Additionally, I am convinced that diet is a powerful tool in dealing with a broad range of diseases largely because of its potential impact on the glycation process.  Many of the successful studies dealing with Peyronies have been Italian studies.  Most of these studies have been somewhat refuted by a failure of Western studies to duplicate their successes.  This makes me wonder as to what role Mediterranean v typical Western diet has to do with the disparity between these studies.  Perhaps in diseases in which glycation is a large factor, diet may shift the tipping point between success and failure.  So while I think I understand where Tim is coming from, I also think it is a mistake to simply gloss over these issues.   - George