Peyronies Society Forums

This topic covers theories on causes of Peyronies Disease, studies, evidence, ideas on how you may have developed this disease.

Posted by: Hawk Wed Jun 22, 2005 1:20 am     

Here are just a few of dozens of excerpts and links relating to ED injections and penile fibrosis. Intrestingly some references were made to fibrosis in the actual cavernosa instead of just the in the tunica albuginea. These links are necessarily technical and some have volumes of information but it may be worth plowing through if you have, or are considering these injections.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15014552

A clinical study from the Department of Andrology, Sexology and STDs, Cairo University, Cairo, Egypt.
"Two groups of patients were included, group I included 168 ED patients trained on self-injection therapy using one of the three protocols. Protocol A: papaverine; protocol B: PGE1; and protocol C: trimix (papaverine, phentolamine and PGE1). Patients were followed up clinically, sonographically and by laboratory investigations for 6 months to evaluate the occurrence of side effects."

"Patients on papaverine had the highest incidence of complications concerning prolonged erection, subcutaneous hematoma and penile fibrosis."
"Duplex ultrasound was beneficial in detecting mild clinically impalpable fibrosis. "

http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Feat/ACF2EE4.cfm&pub_id=8&article_id=27

"Adverse effects of these drugs include priapism, fibrosis, penile pain and hematoma at the injection site. Papaverine carries a higher incidence of priapism than alprostadil (4% vs. 2.6%)"

http://www.healthtouch.com/bin/EContent_HT/drugShowLfts.asp?fname=usp0180.htm&title=Papaverine+Intracavernosal&cid=HT

"Precautions While Using This Medicine
It is important for you to examine your penis regularly. Check with your doctor if you find a lump where the medicine has been injected or if you notice that your penis is becoming curved. These may be signs that unwanted tissue is growing (called fibrosis), which should be seen by your doctor."

I WISH I HAD BEEN WARNED TO BE ON THE LOOKOUT FOR A LUMP OR THAT THERE WAS ANY EVIDENCE LINKING THESE INJECTIONS TO Peyronies Disease.
If you have been injecting, I guess by the time you read this on a Peyronies Disease site it would come under the heading of "news too late to do any good". Maybe I need to find some ED sites to post it on.

Posted: Sun Jun 26, 2005 7:20 am     

Guest


It's dcaptain. I have to admit that I don't have a lot of knowledge in this area. What I do know, however, at least from personal experience, is that I have problems with scarring in general. I have a few keloid scars, which are similarly an overproduction of scar tissue as a response to wound. It seems that keloids are somewhat common, too. I guess the body tends to overcorrect - damn if it weren't such an overachiever!

Posted: Sun Jun 26, 2005 3:30 pm     

Joshua


Dcaptain: make sure you sign in before you post and you name will appear correctly. The log in is in the top right corner under usergroups.


I posted this question somewhere else and want to post it here as well. Please respond if you started your Peyronies Disease with a small hard bb plaque. I think the cause of Peyronies Disease can be traced to the symptoms. I also believe that the men that start with the small bb plaque are not from injury.

Posted: Mon Jun 27, 2005 3:45 am     

Guest


Sorry Joshua, I'll figure this posting thing out (it's dcaptain). In the interim, one question - when you say BB plaque, do you mean that it's "rounded" or spherical? Also, is there a specific place (ie, on top of shaft, on sides, etc) where such a BB-shaped plaque would "typically" present?

Posted: Mon Jun 27, 2005 4:01 am     

Joshua

Dcaptain:

The best I can describe it:
A round ball shaped plauqe nodule. Very hard. I would say a little larger than a bb but much smaller than a marble. My first one started in the dead center of the middle of my penis. Then the pain then the rest of the plaque. I improved but then another round plaque grew on on the right side of my tunica near the base.

Did yours start like this?

Posted: Tue Jun 28, 2005 5:08 am     

Guest

It's dcaptain. Joshua, I have to admit you are almost freaking me out. Not to get into my entire story, but the short-short version is this: I don't know if I do or if I don't have Peyronies Disease. I have something that very well could be sclerosing lymphangitis; it looks like a vein on the left top, just below the glans. It's been four months, and this vein/lymphatic/lump thing has not gotten hard - it just feels like if you were to push down on a vein on your hand, for example. But it bulges. I also don't have a "curve," but more of a "tilt," (as in, the whole thing points left, but only when semi-erect. When fully erect, no tilt). Nevertheless, about a week ago, I noticed something dead center more IN my penis, exactly half-way up. It almost feels like a ball. I was thinking that perhaps it was a clot, but I have no idea. Maybe scar tissue. Hell, I had an injection to get my last ultrasound - it could be a scar from that and unrelated to anything up til this point.

As I'm not too familiar with your case - did y ou get a diagnosis of Peyronies Disease, or are you still in the guessing stages? How has the ball/scar changed since you first got it?

Posted: Wed Jun 29, 2005 2:07 am     

Joshua


Try resetting your password. Also try clearing your cache under tools /options/
That should fix the login problem.

The soft vein lump does not sound like a Peyronies Disease plaque. The hard ball does sound like a possible start to Peyronies Disease. Do you have pain? Be careful while you are figuring out what is going on.

Yes, I have visited uros and General MD. My family Dr has helped me more but he had Peyronies Disease and is a family friend.

Take care
Joshua

Posted: Thu Jul 07, 2005 12:16 am     

Joshua

Repeated tunical mechanical stress and microvascular trauma is one the most accepted causes of Peyronie's disease. Microvascular trauma or subtunical bleeding consequent to sexual intercourse can result in fluid and fibrinogen in the subtunical layers. The resulting fibrin deposits may initiate a wound healing response, which in addition to pain and hematoma; determine a subsequent inflammatory response with recruitment of macrophages and neutrophils

I stole the above from:
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1677-55382003000300018

Sex is rough on the penis. There is no doubt that there are micro tears in the penis during sexual intercourse. It appears that when the wound/tears repair that collagen builds up in massive amounts in some men. If you are one of those men and are susceptible to peyronies plaque, take it easy during sex. I have also read that it is very important for those of us to use extra amounts of lubrication. That would also help men with curves. When my curve was worse, I used lubrication and it made everything work much better. I strongly suggest you guys regularly use quality lubrication during sex and use plenty of it.

Posted: Fri Jul 15, 2005 6:14 am     

Caspian

Hawkman wrote:
Here are just a few of dozens of excerpts and links relating to ED injections and penile fibrosis. Intrestingly some references were made to fibrosis in the actual cavernosa instead of just the in the tunica albuginea. These links are necessarily technical and some have volumes of information but it may be worth plowing through if you have, or are considering these injections.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15014552

A clinical study from the Department of Andrology, Sexology and STDs, Cairo University, Cairo, Egypt.
"Two groups of patients were included, group I included 168 ED patients trained on self-injection therapy using one of the three protocols. Protocol A: papaverine; protocol B: PGE1; and protocol C: trimix (papaverine, phentolamine and PGE1). Patients were followed up clinically, sonographically and by laboratory investigations for 6 months to evaluate the occurrence of side effects."

"Patients on papaverine had the highest incidence of complications concerning prolonged erection, subcutaneous hematoma and penile fibrosis."
"Duplex ultrasound was beneficial in detecting mild clinically impalpable fibrosis. "

http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Feat/ACF2EE4.cfm&pub_id=8&article_id=27

"Adverse effects of these drugs include priapism, fibrosis, penile pain and hematoma at the injection site. Papaverine carries a higher incidence of priapism than alprostadil (4% vs. 2.6%)"

http://www.healthtouch.com/bin/EContent_HT/drugShowLfts.asp?fname=usp0180.htm&title=Papaverine+Intracavernosal&cid=HT

"Precautions While Using This Medicine
It is important for you to examine your penis regularly. Check with your doctor if you find a lump where the medicine has been injected or if you notice that your penis is becoming curved. These may be signs that unwanted tissue is growing (called fibrosis), which should be seen by your doctor."

I WISH I HAD BEEN WARNED TO BE ON THE LOOKOUT FOR A LUMP OR THAT THERE WAS ANY EVIDENCE LINKING THESE INJECTIONS TO Peyronies Disease.
If you have been injecting, I guess by the time you read this on a Peyronies Disease site it would come under the heading of "news too late to do any good". Maybe I need to find some ED sites to post it on.


OMG! So this was the cause of your Peyronie's disease. This was the injury. That sucks.


_________________
You are what you iz

Posted: Fri Jul 15, 2005 6:17 am     

Caspian


Joshua wrote:
Dcaptain: make sure you sign in before you post and you name will appear correctly. The log in is in the top right corner under usergroups.


I posted this question somewhere else and want to post it here as well. Please respond if you started your Peyronies Disease with a small hard bb plaque. I think the cause of Peyronies Disease can be traced to the symptoms. I also believe that the men that start with the small bb plaque are not from injury.


I didn't notice any plaque in the beginning but my father and grandfather have Dupuytren's Disease. I don't know of any actual injury, just the genetic factor of Dupuytren's.


_________________
You are what you iz

Posted: Wed Jul 20, 2005 3:49 am     

dcaptain


Joshua,

Just to be clear - when you say that the bb-sized plaque is dead center in the middle of the penis, you are basically saying that it's on the septum, or perhaps directly below the septum near the urethra or the top of the corpus spongiosum, correct?

See fig. 2b on this page:

http://radiographics.rsnajnls.org/cgi/content/full/21/suppl_1/S283

dcaptain

Posted: Wed Jul 20, 2005 7:57 pm     

Joshua

dcaptain wrote:
Joshua,

Just to be clear - when you say that the bb-sized plaque is dead center in the middle of the penis, you are basically saying that it's on the septum, or perhaps directly below the septum near the urethra or the top of the corpus spongiosum, correct?

See fig. 2b on this page:

http://radiographics.rsnajnls.org/cgi/content/full/21/suppl_1/S283

dcaptain


yes, 2b with the thin arrow.

Posted: Sun Jul 24, 2005 2:20 am     

Hawkman


This started under "Erectile Dysfunction" but has more to do with the effects of erection on aggravating or reducing the progression of Peyronies Disease than it does on erectile dysfunction. It could go under treatment, Urologists experiences, progression of Peyronies Disease, or Causes of Peyronies Disease. I decided to place it here.

Caspian wrote:
Joshua wrote:
Hawkman wrote:
For now I just say that Dr. Mulhall who is possibly the most identified name associated with Peyronies Disease treatment would disagree. In fact he specifically insisted that I continue to inject bimix into my penis 2 - 3 times per week for erections.

After careful consideration and research I made it clear I would not do that. My refusal was based more on the potential damage from the needle and the mixture itself than because I wanted to avoid erections.

Infact I take Viagra in an attempt to get as much of an erection as possible.


Hawk:
I agree after the inflammation phase. It is vital to have sex,erections,and keep the blood flow strong. That is what I think almost healed me. However, I think it makes good sense to refrain from sex during the painful inflamation stage. If your causing pain to your penis, something isn't right. My Dr told me to simply refrain until the pain was gone.


I thought it was important to have erections to help stretch out the scar tissue.


If we are understanding each other then there is clear disagreement on this issue. Mulhall is big into Bimix injections for ED whether or not Peyronies Disease develops in the process. This means he insists on erections during the acute phase even if it means 3 needle jabs per week into the penis. Obviously, he believes (and has stated) "that there is no evidence that injections of bimix cause or aggravate Peyronies Disease."

I find this statement to lack credibility based on research, logic, and personal up close observation. First, studies indicate bimix carries an increased chance of plaque even when compared to other injectable ED drugs (see studies earlier in this thread). Next, if they embrace the micro-trauma theory of Peyronies Disease then how are 3 injections per week through the tunica albuginea and into the corpora cavernosa directly followed by erections and manipulation of the injection site not micro-trauma? Finally, I developed scar tissue at the injection sites making it difficult to insert the needle if I made a direct hit.

I may be dumb (I certainly was while injecting) but doesn't scar tissue on the penis equate to lack of stretching in that area which also equates to Peyronies Disease? I was oblivious to Peyronies Disease. With cancer research and my fight against ED it never occurred to me that a little scar tissue forming on what was an 8" penis was any big deal. This was in part due to the doctor and his nurse's seeming total lack of concern about this scar tissue or the developing downward curve. They never even suggested it could be Peyronies Disease until after I self diagnosed the problem. Was it coincidence that I happened to get scar tissue on each side of my penis in an area the size of my thumb nail where I injected and that it occurred 8 months after injecting two times per week?

Finally, I know radical prostatectomy and catheterization both carry a somewhat increased incidence of Peyronies Disease. In my case however there appears to be no connection because Dr. Mulhall told me that my Peyronies Disease was not associated with any aspect of the surgery because Peyronies Disease from those causes manifests itself within 3 months of the event. I had no trace of Peyronies Disease for a full year after surgery. He assured me I would have developed Peyronies Disease if I had never had surgery and never injected. I think evidence, logic, and personal observation strongly challenge that idea.

Conclusion: Some doctors encourage erection in the acute stage of Peyronies Disease even prescribing invasive measures to initiate erection.

Some encourage no erection.

Neither have any objective clinical evidence to back up their position. As Rzz would say, they have less than a theory because a theory requires some evidentiary basis. What they have is differing ideas.

Question: Where does that leave patients? Answer: Patients have to pretty much follow their own ideas, which the medical community will then ridicule because our ideas have no basis in objective clinical evidence.

Posted: Sun Jul 24, 2005 4:45 am     

dcaptain



Hawkman,

This is an absolutely spot-on analysis of this problem. Outside the issue of injections, it seems as though it comes down to whether or not one agrees with the notion that (1) microtrauma is caused/aggrivated by sexual activity, leading to further damage, or (2) sexual activity helps stretch the scar tissue and increase blood flow, creating a net positive effect.

It's very possible that both are the case, and that sexual activity is almost a "wash", but it would be helpful if science had some consensus on the point. I think the issue of "when" also comes into this, because I don't think it's necessarily ever been well defined (at least for me) when the acute phase stops and the chronic phase (or whichever other term you want to use) begins. I have no idea whether or not I am still in the acute phase. It's been approximately 4.5 months, but is time the only indicator of when one switches phases? As with anything, I'm sure it's not uniform. I have no pain that would indicate either way, so I have nothing to tell me whether or not I'm in a phase where sexual activity will be helpful or hurtful (depending upon one's opinion on the point.)

It seems as thought it's hardly settled or remotely clear cut, in my mind. However this does bring up the issue that perhaps I need to better understand exactly what goes on internally during sexual activity. I get the basics, but I wonder about how microtrauma actually can occur, as well as how blood flow might or might not affect scar tissue. I hate to be pessimistic, but something tells me the literature just isn't fully there...

I think that urethra issues/problems could be a serious cause for many of us. I had an urethra that grew very small (possibly after an infection) My urine stream was very small and I had a short time where it was painful to urinate very hard. I forced the issue and this MAY be the root of my Peyronies Disease issues. The opening is now back to normal.

When you read up on DMSO and all of the ailments it can help with. As well as the way that it works. It makes perfect sense. I personally have not had any success with anything topical. It sound crazy I know but I have even tried flex-all for the pain (it helped the pain but it was a whole other hell.) and Stivectin for the "scar". I have rubbed all kinds of things on my tools. Oh the best was this concoction I found in New Orleans. I honestly couldn't tell you what all was in it. There was Rhino horn and bull schlong. There some more animal parts and a bunch herbs that I can't remeber. It smelled like rotting flesh and fresh dung. It did make the blood flow a bit but that was it. 

In some on-line reading months ago I found a study claiming to have statistical evidence of  a  connection between the tendency to have Peyronies Disease and the tendency to have gout.   i.e. If you are prone to have gout you are at greater risk of developing Peyronies Disease.  That was months before I discovered this forum and now I cant locate the study.  Has anyone else run across this in reading.  Are any of you gout sufferers?

If you had a mild flare up you may not have gone to the doctor.  Gout usually shows up as an inflammation in the extemities.  Most commonly in the big toe area or some other part of the foot.  The area will turn pink, become warm to touch, and hurt.

The connection may be well-known by urologists, considering that the Colchicine that many of them prescibe for Peyronies Disease (in vain, it seems to me) is more generally used to treat gout.

This is a reply to a request to post a theory I have considered concerning the use of ED drugs (Viagra ect.) and the development of Peyronie's.

Let me say first that it's my opinion that Peyronies Disease is triggered by microvascular trauma. However, there are enough reports linking Peyronies Disease to other diseases such as Dupuytren's contracture that a certain percentage of Peyronies Disease patients may have a genetic predisposition for the disease, putting them at higher risk for Peyronies Disease development.

Now in considering the association of Peyronies Disease development to ED drugs my thoughts are directed towards older men, say 45 and above. In my case I tried Viagra at age 57, not because I had ED as my nocturnal erections were still very strong, but after 33 years of marrage my "on demand" erections were sometimes less than satisfactory. I found that even 1/3 of a 50 mg. tablet gave me a solid youthful lasting erection with very little foreplay. Within one month I developed Peyronies Disease, and I should add that there was no hero sex involved, and no known trauma.

So where is the tie in? We know that as we age tissue becomes less elastic, this of course would include the tunica albuginea. Since many urologists feel that in this age group an unknown and unfelt trauma, that is referred to as micro trauma, may occur in normal intercourse. The theory then is could it be possible that a youthful solid erection, induced by an ED drug, stretch the less elastic tunica of older men excessively creating micro lesions, and trigger the aberrant wound healing called Peyronie's Disease? When you combine these very solid erections with normal intercourse the case is even stronger.

Obviously, Peyronies Disease has been around far longer than ED drugs, But could this be just one more trigger to start the development of Peyronies Disease? This is just a theory and I admit it's outside the envelope, but the pieces do seem to fit.

It would be interesting to see if any of you fit into the profile of this theory.

Larry

I was reading an article on Forbes.com about my employer and found this link. I coudn't resist. If this link doesn't show up as a hyperlink, just copy and paste it into your browser, then hit 'go':
http://www.forbes.com/health/2005/10/05/sex-health-lifestyle-cz_af_1005health.html?boxes=custom

This is an interesting link that makes a connection I never saw specifically outlined like this before.  On first glance, it seems to explain some of the other things that are suspected of treating or exacerbating Peyronies Disease.  It would also add insight on whether erection is helpful or harmful in the acute (early ) stages.

https://www.peyroniesforum.net/index.php/topic,130.0.html

I am 56 years old and five months ago had laser surgery for an enlarged prostrate.  This procedure caused me to wear a catheter for seven days during which I had several very painful bladder spasms.  These spasms would build up so much pressure in my penis, I would actually spew out blood from around the catheter.  After the catheter was removed I was very sore and noticed two purple bruise's on either side of my penis.  As I recovered from the prostrate procedure I began to notice that my penis seems shorter and leaned to the left.  I also felt two hard areas on either side of my penis which were never there before.  I went to my Urologist and he diagnosed me as having Peyronies Disease and suggested that I start taking high doses of Vitamin E.   The Urologist said he has never heard of Peyronies Disease being caused from the prostrate procedure.  I believe I developed the disease from trauma to the blood vessels caused by a bladder spasm while the catheter was in place.  Has anyone had a similar experience? 
Also, has anyone purchased Dr. William Bodri's download of "How to dissolve Peyronie Plaque Naturally?  Is it worth it, does it contain any new information?

The following post is based soley on my understanding of the issues.  I welcome any corrections or insight that others may have.

In clinical studies, we often see a close association made between the pathology of so-called Peyronies Disease "plaque" and keloids.  Keloids are a form of scar tissue that once begun, fail totally to recognize the wound boundaries.  As a result, this scar formation rolls right over perfectly healthy tissue.  I think we make a mistake when we expect methods that may control arterial "plaque" to have any effect on Peyronies Disease plaque which is completely different.  I have never seen, heard, or read, a single study that made any vague comparison between Peyronies Disease scarring and arterial plaque.  The entire use of the word plaque by us as laymen, tends to confuse us on the fact that Peyronies Disease nodules or "plaque" is scarring gone wild and is collagen based.  My understanding is that Peyronies Disease nodules, or scarring have no more similarities to arterial plaque than they do to kidney stones, and we can not expect that the treatment would be any more similar.

In the picture below, "characteristic spreading of keloid scarring can be appreciated in this patient.  The "scar began with folliculitis in center of chest and spread to the lateral chest over 14 years. Scar-spreading mimics wave propagation, leaving flat disfigured skin behind the thickened and tender scar wavefront."  It is important to note that more follicles did not become infected and scarred.  Instead, the keloid scar totally disregarded the boarders of the small wound site, and continued to over-run healthy tissue.  The complete article that addresses the control of this and other types of scar tissue is in our resource library at https://www.peyroniesforum.net/index.php/topic,155.0.html  as a three part document. 

It will appeal to those that don't mind extending some effort to gain insight about what we are up against, and some possible clues to treatments or future breakthroughs.

Budman,

I have never had a catheter so I don't have personal knowledge of it's use. There have been several urologists that have stated that the placement of a catheter is too far from the tunica to cause the onset of Peyronie's. However, in the several years that I have been researching Peyronies Disease I have noted that quite a few men have posted on various Peyronies Disease forums that their Peyronies Disease appeared after a catheter had been used.

I don't know if there is any connection, but the possibility that there is a conncetion has been discussed.

Larry

Note to Budman:
I had a radical prostatectomy in 1995 almost 11 years ago now. Wore a catherter for 31 days without it being removed. As far as I know, there were no ill effects from wearing it so long.

In my counseling work with the American Cancer Society, I have occasion to talk with guys who swear that their Peyronies Disease came as a result of wearing one for a while after surgery.
 
I presented this question to my personal uro and she asked the entire group of uros that sponsor me. The answers came back that the reason  men encounter Peyronies Disease after any uro surgery is that during the operation the penis is held by forceps, clamps and other surgical instruments. The say that is the most likely reason for Peyronies Disease forming. These instruments exert quite a bit of pressure on the penile shaft because I was not entirely put to sleep when the surgeon and OR assistants were putting the things on me.

In addition to prostate surgery, had a three bypass heart one done in 2004 wearing a catherter for about 4 days and had no problem then either.

So the above is only in the " for what it is worth department." Have no clinical proof of the conclusion of my uro group or my personal experience.

Regards, Old Man

Larry H and Old Man, thanks for the comeback.  Your posts are the first I have read that might support my suspicion.   I actually think my catheter caused a vessel rupture during one of those bladder spasms.  It was not until I healed that I developed symptoms of Peyronies Disease. 
Does anyone know if this online book by Dr William Bodri is worth the money or can you get the same treatment imformation from this and other websites?
Thanks, Budman

Hawk, thanks for bringing this up.  The issue of the use of the word "plaque" has been something that's bugged me for awhile.  Sorry I've kinda been off-forum for awhile, it's good to be back.

Yes, my understanding is as yours - "plaque" as we use it has as much to do with arterial buildup as it does a bowling trophy.   My understanding has always been that our Peyronies Disease plaque is a buildup of tissue/scar tissue, not unlike other scarring problems.  However, in talking with my urologist, who is an expert in Peyronies Disease, he indicated that Peyronies Disease has no real association with keloid scarring specifically.  I asked him as I have three keloid scars - much much much smaller than those in the picture, but they are an absolute pain.  At first I thought there had to be a link - are fibrotic disorders, wound healing issues.  Nevertheless, he said that in the "2000 guys he's seen with Peyronies Disease" I'm only the second or third who has a problem with keloids.  (Don't know if that constitutes a lack of a link, but that's how he phrased it.)

My experience with keloids, however, is oddly not unlike that with Peyronies Disease - at least in terms of treatment.  Again, my scars are a lot smaller than those you have pictured - more like the size of a dime.  Mine are also on my chest.  Nevertheless, they grow if you don't contain them, and they are painful as all get out, and itch.  I basically go to a dermatologist every few months to have them injected with Kenalog, a steroid.  After a number of injections, they flatten out.  Sometimes they slowly (we're talking months) come back up, but then I just go get another injection, and they flatten back for a few more months.  They are a pain, but the theory is that at some point you basically "kill" the ability of the keloid to grow back with the Kenalog.  That's already happened with one of the three scars I have.

Is there a link?  I don't know - my urologist doesn't think so.  Nevertheless, it does seem odd to me that one person would have both Peyronies Disease and keloid scarring problems.  I guess I tend to think there still has to be some connection....

My two cents.

Hey, Great to hear from you.  

For the little it is worth, I would have to agree with your doc since the population most at risk for keloids is very low risk for Peyronies Disease as most docs assess the statistics. (dark skinned).

While I think the have very different heredity links, I do think their scarring / collagen battle has much in common.  In fact, this battle is similar in all of the following: hyper-scars, keloids, adhesions, burn scars, and even general plastic surgery scars.  They all have similar preventative and corrective protocols.  They differ more in the degree of the problem and agressiveness of the protocol rather than the type of protocol.  

Good: rapid healing, no stretching, warmth, no whole blood in contact with the wound, - USE OF: anti-inflammatory and anti-fibrotic drugs including Cipro, aspirin, antihistamines.  This is very simplistic but you get the point.

Also, examination of Peyronies Disease scarring and keloids have some similar traits and they invade sound tissue almost like a tumor invasion.  The more I read the more fascinated I am.  I wonder why Cipro, and antihistamines are not tried for Peyronies Disease since they seem to be the new approach for other forms of scar control?  It seems to make more sense than potoba, and colchicine.
.

I think Old man's post is dead on, would explain why some men get peyronie's after prolonged surgery.  I don't think it is the cathereer, its the tools used on your penis during the surgery or procedure, makes sense

Steven

Hawk, I must admit I've read this post several times since it's first posting and have been unsure as to how to start a discussion of it.  My biggest interest is part of the quote you highlight:

There is some evidence that when oxygen levels become too low, TGF-B1 production increases and prostaglandin production decreases. If oxygen levels become too low, smooth muscles atrophy and collagen is overproduced, causing scarring and loss of elasticity and reduced blood flow to the penis. Infrequent erections deprive the penis of oxygen-rich blood.

Outside the issue of erections, I would like to bring up the issue of the oxygen level and how this reportedly plays a role in fibrosis.  Most specifically, I'm wondering if there is any link here with the issue of nitric oxide.  Everything I've read about l-arginine, for example, indicates that it increases nitric oxide (NO) levels and that this helps with decreasing fibrosis:

http://tinyurl.com/a6ft7

This would seem to relate to the issue of oxygen level, wouldn't it?

My questions are:

1) Do you have any understanding (scientific, and therefore beyond me) as to how these two might relate?  I get that the NO level is increased, but is it the therefore increased blood flow that might increase oxygen levels?

2) I'm also wondering if anyone on the board has stayed on l-arginine for an extended period of time. (?)  Say, six months or so.  Just curious.

Sorry, I'm out of my element but trying to understand this better.  I figure starting a conversation on it may be the easiest way to start.  If' I'm out to lunch by all means tell me.

dcaptain

Found this interesting.  Everytime I see something new about Peyronies Disease, the prevalence numbers are higher.

Prevalence of Peyronie's Disease Among Patients With Erectile Dysfunction.
Eur Urol. 2005 Dec 19; [Epub ahead of print]

El-Sakka AI.

Department of Urology, Suez Canal University, School of Medicine Ismailia, Egypt and Al-Noor Specialist Hospital, Makkah, Saudi Arabia.

PURPOSE: To assess the prevalence of Peyronie's disease (Peyronies Disease) among patients with erectile dysfunction (ED). MATERIALS AND METHODS: A total of 1,440 male patients with ED were enrolled in this study. Patients were interviewed for ED using the International Index of Erectile Function (IIEF). All patients were also screened for socio-demographic data and risk factors for ED that included age, smoking, diabetes, hypertension, dyslipidemia, Ischemic Heart Disease (IHD), and psychological disorders. The diagnosis of Peyronies Disease was based on a palpable penile plaque or acquired penile curvature. Patients underwent routine laboratory investigation in addition to testosterone and prolactin assessment. RESULTS: Mean ages +/-SD were 54.1+/-6.9 (range 42-71) and 52.5+/-11.9 (range 20-84) years for patients with and without Peyronies Disease respectively. Of the patients, 11.8% had mild, 38.3% had moderate and 49.9% had severe ED. 7.9% of the patients had Peyronies Disease. Significant associations between Peyronies Disease and both the longer duration and the increased severity of ED were detected. There were also significant associations between Peyronies Disease and the following socio-demographic risk factors of ED: age, obesity, smoking, duration and number of cigarettes smoked per day. Concomitant diseases and medical comorbidities such as diabetes, dyslipidemia, psychological disorders and the presence of at least one risk factor were significantly associated with Peyronies Disease in patients with ED. CONCLUSIONS: Peyronie's disease was not rare among the study population. There were significant associations between ED risk factors and Peyronies Disease. Further studies are needed to investigate how much ED and Peyronies Disease influence each other.

Maybe this helps add to the discussion.  Now I wish I went to medical school...

The pleiotropic effects of inducible nitric oxide synthase (iNOS) on the physiology and pathology of penile erection.

Gonzalez-Cadavid NF, Rajfer J.

LABioMed at Harbor-UCLA Medical Center, Torrance, CA, and Department of Urology, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA. ncadavid@ucla.edu.

The contribution of the neuronal and endothelial isoforms of nitric oxide synthase (nNOS and eNOS, respectively) in the synthesis of nitric oxide as a mediator of penile erection, at the levels of both the penile corpora cavernosa and the hypothalamic regions that control the erectile response, are well established. More recently, the role of the third NOS isoform, the inducible NOS (iNOS), has also started to be elucidated. iNOS does not appear to intervene directly in physiological penile erection or in its central control, but its transcriptional induction is postulated to be a key factor in two opposite related pathological processes, namely neurotoxicity in critical related regions of the hypothalamus during senescence, and as a defense mechanism against the aging or injury-associated fibrosis in the penile corpora cavernosa, the media of the penile arteries, and the tunica albuginea. By counteracting fibrosis that impairs cavernosal smooth muscle compliance, iNOS would protect the erectile tissue. However, further studies are needed to conclusively evaluate these putative roles in the two organs involved in reproductive function. In addition, whether iNOS induction during aging is a major cause in the net loss of trabecular smooth muscle in the corpora cavernosa through apoptosis, remains to be elucidated. The overall evaluation of these conflicting effects is important in order to decide whether pharmacological iNOS induction, or alternatively NO donors or L-arginine, may constitute a valid approach to prevent or treat penile fibrosis and vasculogenic erectile dysfunction.

My Dr. stated that he has known of several cases of Peyronies Disease development because of the male's urethra being too small. It may have been reduced in size because of inflammation. Then the force and pressure in the area causes internal micro tears and the fibrosis build up occurs.

treatment with a stint or small rods to reopen the area are used. Then often Peyronies Disease may reverse to some degree.

Something you all might want to check...

I am new to the forum and was wondering if anyone had taken a poll or survey to see how many men that developed Peyronies Disease were taking Glucosomine/Chondroitin at the time.  When I developed Peyronies Disease about 2 1/2 years ago I was taking the G/C and stopped when the PDLabs said that it could be a side effect.  I have noticed on other forums that there seems to be a connection to G/C and Dupuytren's which is similar to Peyronies Disease.

Emersonchief,

First let me give you a warm welcome not only as a new member, but for entering the ranks of those that take an active role in making the forum a success.

We have not run such a poll such as the one you mention on Glucosomine/Chondroitin.  Since this is your forum however, design the question and answer, and send it to us for a quick look.  We will get it posted.  You can just send it to me or Joshua in a private message.

Thanks for the input.
 

Emersonchief,


Its also been blamed for prostate cancer, I read somewhere where most men over 50 take gloc/ condri  and most men over 50 are people who get prosate cancer and Peyronies Disease. maybe? that is how the link got started.

All:

When I went to see my Peyronies Disease uro he asked if I had used Viagra or Cialis.  I hadn't but they are trying to see if there is a link.   It looks like there is also a link between diabetes and Peyronies Disease.  I wonder about high blood pressure.  How many of us have hypertension?  I know it is implicated in ED, but does it have a role in Peyronies Disease development?

Anyone else have thoughts about this?

If those disease cause weak erections then they may cause Peyronies Disease, but I think Peyronies Disease is caused by mini trauma with weak erections and or major trauma with strong erection.  Young people get Peyronies Disease so diabeties, HBP and all those over 50 diseases I doubt are the primary cause.  Also gluca/condritin is being blamed for every over 50 disease, because everyone over 50 probably takes it for sore joints.

Since the advent of chat rooms on the internet -- urban legens are now worldwide legends...

Yes, those are the primary causes of Peyronies Disease, but many of us have it without ED or any known trauma.  It is known that high blood pressure can damage some blood vessels in the eyes, damage the kidneys, etc.  Is it not plausible that it can damage some blood vessels in the penis.  Minor repeated injury to small blood vessels due to high blood pressure causes the body to start repairing itself possibly leading to the formation of scar tissue.  Diabetes can damage blood vessels in the eyes, kidneys, feet, etc.  There has been some discussion about diabetes and Peyronies Disease.  The New Theory mentioned elsewhere advances a theory involving blood sugar and another discussion itme mentions high incidence of Peyronies Disease in diabetic populations.  I wonder how many of us have high blood pressure, or are diabetic? or possibly have blood sugar disorders?  The issue with Viagra and other medications is possibly that it maybe would allow a person to have prolonged intercourse, or more frequent intercourse wherein minute damage may occur. 

I have been thinking about the association of Peyronies Disease and scarring.  When we have a cut or a wound that makes a scar, the scar is there for life and doesn't change very little if any.  With Peyronies Disease plaque which is caused by scarring, as we are told, it changes in different cases.  Mine for instance, went from the size of a quarter to almost smaller than a dime and moved from about midway of the shaft to the base until today it is hard to find as it is under the skin at the base of my penis.  Also the curvature which is supposed to be caused from the tissue losing its elasticity from the scarring, we hear numerous reports from different guys saying that their curvature changes over a period of time.  We have all had injuries during our lifetime which left scars on our body's and we accept them and live with them.  Peyronies Disease, when we are dignosed with it, is evidently a lifelong, ever changing condition that we have to live with.

I do not know the answer but am wondering if Peyronies Disease is caused by injury to tissue or is it as the name describes a disease?

I just want to thank the founders of this forum for giving us a place to read about other people who are going through the same problems as we are.  Until it happened to me I had never heard of Peyronies Disease.  Thanks for giving us a place to at least ask questions and express our thoughts.

I got my Peyronies Disease from a soccer ball hitting me in my penis in the flaccid state in a game when i was 15.  It jammed it in, and that night I noticed my penis hanging to the right and it was annoying and irritating.  Mine was most likely caused by bleeding and my bodies natural reaction to heal the wound.

ComeBackid

I have read this very interesting report awhile back and lost it.. I have wanted to share it with you guys and fortunately just found it again..
http://rex.iutcaen.unicaen.fr/7esacp/abstracts/K008.html (http://rex.iutcaen.unicaen.fr/7esacp/abstracts/K008.html)

CHROMOSOMAL INSTABILITY AND LOSS OF P53 FUNCTION IN PEYRONIE'S DISEASE MYOFIBROBLASTS
Shankey T.V., Branch J., Lubrano T., Mulhall J.P.
Department of Urology, Loyola University Medical Center, Maywood, IL, 60153, USA
Peyronie's disease is a focal fibromatosis of the penis of unknown origin. Previous studies have reported karyotypic abnormalities in Peyronie's and in similar fibromatoses.
Objective: This study was undertaken to investigate genetic abnormalities in Peyronie's cell cultures.
Methods: Fibroblast-like cells were cultured from Peyronie's plaque or normal tunical tissue from nine Peyronie's patients. Cells established in tissue culture were characterized by immunofluorescence. Fluorescence in-situ hybridization was performed using centromere specific probes. DNA content and cell cycle analysis was performed using flow cytometry. Qualitative and quantitative expressions of p53 and related cell cycle proteins was measured using Western blot and flow cytometry, respectively.
Results: Low passage cell cultures demonstrated a IF pattern consistent with myofibroblasts (vimentin pos, cytokeratin and desmin neg, with low (20-30%) percentages of smooth muscle actin pos. cells). Low passage cells showed disomy for chromosomes 7,8,12,17,and 18, and monosomy for X and Y by FISH. Within 10 to 15 passages, the majority of cultures (plaque or normal) developed morphologically abnormal cells, with concomitant aneusomy for a number of chromosomes. Low passage (disomic) cells demonstrated low but elevated levels of p53 protein, compared to neonatal foreskin fibroblasts. Tests of p53 function demonstrated no significant increase in p53, mdm-2, p21 or Bak protein levels following 5 Gy irradiation. FISH analysis of these same low passage cells showed no evidence for loss of p53 loci (ratio of p53 loci to chromosome 17 centromere 1:1).
These results suggest a DNA virus may be involved in the development of Peyronie's disease

That's interesting Joshua. My mother died a couple years back from pulmonary fibrosis. I've often wondered as of late if this may be a genetic problem. Perhaps stem cell research will lead to a cure.

For those of us who never got past Anatomy and Physiology in college, could someone please explain a "DNA virus?" 

Just curious.

dcaptain

A DNA virus is a virus that has DNA as its genetic material and does not use an RNA intermediate during replication. Viruses that either have RNA as their genetic material or use an RNA intermediate during replication are called RNA viruses. The DNA can either be single-stranded (ssDNA) or double-stranded (dsDNA), the latter being more common.Viruses are non-living particles that can only reproduce when an organism reproduces the viral RNA or DNA. Viruses are considered non-living by the majority of virologists because they do not meet all the criteria of the generally accepted definition of life.



list some dna viruses:
http://medir.ohsu.edu/cliniweb/C2/C2.256.html (http://medir.ohsu.edu/cliniweb/C2/C2.256.html)

Definition of DNA virus from medterms.com

DNA virus: A virus in which the genetic material is DNA rather than RNA. The DNA may be either double- or single-stranded.
Major groups of double-stranded DNA viruses (class I viruses) include the adenoviruses, the herpes viruses, and the poxviruses. Major groups of single-stranded DNA viruses (class II viruses) include the parvoviruses and coliphages.

How this all relates to treatment-I dont know.. I can't answer that.. I recall a interesting little flurry of activity once on th BTC where several guys were claiming success with a certain antibiotic treatment. could be related to this somehow.. I also need a Dr or researcher to explain this all more..

I recall now that it was zithromax (z-pack) that a few guys were claiming cleared cases of Peyronies Disease. 
Joshua

Antibiotics are used to prevent the formation of many forms of scar tissue such as keloids and adhesions.  Antibiotics in the class of Cipro can prevent the formation of collagen.  In fact, a listed possible side effect of Cipro is ligament damage.  Since antibiotics attack bacteria instead of viruses, any associated improvement is probably due to the anti collagen properties.  Any virus that was present would not be directly impacted.  My uderstanding is that you must be innoculated against a virus and use antibiotics against bacteria.

so would anti-viral medications POSSIBLY help? or vitamins/herbs that help against viral infections?
Joshua

Hawk:
what is your take then on zithromax for treatment?

Zithromax is a macrolide antibiotic, which has anti-inflammatory activity. They are used in CF care for lung and airway inflammation, but are not as well studied in other disease states, or conditions.

Viruses do not generally have a good anti-viral medicine. Some DNA viruses do have treatments (ie herpes does) - but I read the article in question and I think it is speculative to argue for a viral etiology based on a change in p53 function. That does not satisfy Koch's postulates regarding infectious disease - only the first, that an association be shown (and even that has not been done).

Of course, look how long people treated ulcers as related to stress and acid hypersecretion, when an infection causes most of that problem.

Tim

Quote from: Joshua on May 16, 2006, 01:13:47 PM
Hawk:
what is your take then on zithromax for treatment?

I have no take. Even if I did, Tim's post would be hard to follow  :D  Thanks Tim. 

I have always found the information in our resource library on scaring to be very interesting reading.  Look 4 paragraphs down from "Title" on this link https://www.peyroniesforum.net/index.php/topic,151.0.html

I took zithromax for an infection and it did not affect my Peyronies Disease.  But, I took other antibiotics for a prostate infection and they seemed to cause the plaque to minimize or even disappear.  As Hawk stated, some of these antibiotics have a role in preventing scaring.  I do have a question about interferon and how it may help Peyronies Disease.  Does any one know?

Thanks,

Phil

Interferon has been tried against Dupuytren's contracture, which involves the same tissue changes. So it's logical it would be tried for Peyronie's. It seems to be yet another 'promising' therapy that showed effectiveness in a small study - but has had no followup.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8171142&dopt=Abstract

Broadly speaking, interferon is an anti-inflammatory medicine that might reduce the inflammatory component of Peyronies Disease. The full article on this (below) does discuss this. IT is naturally produced, and has been artificially produced as well to combatt a whole host of diseases - some more effectively than others. BTW, my late father took it for hepatitis C and it made him quite hard of hearing.

Tim

I think that if there's going to be an answer anytime soon - i.e. within my lifetime - it will be an antifbrotic drug.  I keep coming back to the report of person taking Perfenidone for pulmonary fibrosis who also saw his Dupuytren's contracture go into reversal.  This was just a single post on a forum, but it's the only credible report I've seen of resolution of Dupuytren's contracture.

I've posted this before, but we should all be aware of what's happening with Dupuytren's. The studies are of much better quality - larger numbers of patients, easy and unambiguous diagnosis, objective measurements.  And the tissue changes are the same. What works for Dupuytren's should work for Peyronie's.

I believe that cipro is part of the quinolone family of anti-biotics.  I took a 52 day cycle of Levaquin 500mg which is in the same family when my Peyronies Disease first showed appeared.  Levaquin and Cipro have been known to cause tendon damage by reducing the elasticity of connective tissues.  I think this may have been what happened in my case.  But this raises the question of how Peyronies Disease occurs.  Is it from the damage, or from the healing process of the damage.  About 8 years ago I was having sex with my girlfriend on top.  I slipped out and she came crashing back down.  The whole left side of my penis was swollen and tender.  Two weeks later it was like nothing ever happened.  However while in my fourth week of Levaquin I began my Peyronies Disease symptoms.  If the healing process was the culprit than surely I would have had a Peyronies Disease episode years ago after a significant injury.  Instead I think it could be related to a reduction in the elastic tissue, or an injury that causes normal healthy tissue to hyper expand or rupture.  I realize this is not new info, just wanted to share my thoughts. 

I took a blood pressure drug called Ziac. Its a mix between a beta blocker and a duretic at a very low dose. Anyways if I have Peyronies Disease im certain its from that medication. The doc told me it might make me feel a little dizzy and urinate more...... thats back when I trusted docs and know better now to do my own research. Anyways dont take any beta blockers or they will ruin your life maybe? It claims its a very very rare side effect, but I was only like 19 or 20 when I started taking the med, so I think its more common then they think.

I too was taking a beta blocker when I developed peyrones and I am sure that it had something to do with it.  The good news in this regard is that getting off the beta blocker has been shown in some cases to initiate a reversal of the peyronies itself.  So, howcanthisbe, I hope you are off the beta blocker combination and on another drug for your bp issue.  Incidently, here is a very good read for someone with hypertension.  It is a bit tedious, but very informative and very authoritative: http://www.stress.org/Hypertension.htm . 

George, where did you read sometimes getting off the beta blocker will cause a reversal in Peyronies Disease? I believe it can be reversed, and im only 23 now so im keeping my head up.

I JUST KNOW that I read this on pubmed, but now I can't find it.  So here's what I can find though:

Search down this Brazilian page

http://www.npng.com.br/forum/topic.asp?TOPIC_ID=34193

through all the Portugese discussion and you will find this:

QuoteMETOPROLOL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
GENITOURINARY EFFECTS
SUMMARY
b. A rare case of PEYRONIE'S DISEASE has been reported following metoprolol therapy. Symptoms resolved 4 weeks after discontinuation of metoprolol (Prod Info Toprol XL(R), 2002; Prod Info Lopressor(R), 2002; Yudkin, 1977).
c. Other genitourinary effects including dysuria, nocturia, and micturition have been reported with other cardioselective beta-blocking agents.
d. For More Information:

PHENOBARBITAL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, MUSCULOSKELETAL
MUSCULOSKELETAL EFFECTS
2. CONNECTIVE TISSUE DISORDERS occurred in 10 of 178 patients (6%) who were treated with a barbiturate (PHENOBARBITAL or PRIMIDONE) as monotherapy for 6 months or longer during a prospective study (Mattson et al, 1989). The disorders occurred in 7 of the 10 patients during the first year of treatment. The connective tissue disorders associated with PRIMIDONE in these patients were FROZEN SHOULDER, ARTHRALGIAS, and DUPUYTREN'S CONTRACTURES. With PHENOBARBITAL, SHOULDER PAIN, Dupuytren's contractures, and PEYRONIE'S DISEASE were observed. In this study, no association was observed between new-onset connective tissue disorders and CARBAMAZEPINE or PHENYTOIN therapy (for 6 months or longer). These data support the association between barbiturate use and the development of connective tissue disorders. It is suggested that switching to an alternative antiepileptic agent such as CARBAMAZEPINE, PHENYTOIN, or VALPROIC ACID should be considered in patients presenting with symptoms of musculoskeletal problems while receiving barbiturates.

PHENYTOIN
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
E. PEYRONIE'S DISEASE
1. SUMMARY:
a. Peyronie's disease has been reported in association with phenytoin therapy (Prod Info Kapseals(R) Dilantin(R), 2002).

PROPRANOLOL
CAUTIONS
ADVERSE REACTIONS
ADVERSE REACTIONS, KIDNEY/GENITOURINARY
B. PEYRONIE'S DISEASE
1. SUMMARY
a. Rare cases of Peyronie's disease associated with propranolol therapy have been reported (Jones & Castleden, 1981; Osborne, 1977; Wallis et al, 1977; Coupland, 1977).

I don't know where he got it from - I can't find it anywhere, but it lines up with what I previously read somewhere.

Also note this pubmed entry which infers that the peyronies improved with the removal of the metoprolol:

QuotePeyronie's disease (induratio penis plastica) and a syndrome resembling systemic lupus erythematosus (S.L.E.) contemporaneously developed in a 50-year-old man six months after initiation of treatment with metoprolol. In view of the improvement in symptoms and signs on withdrawal of metoprolol, it seems likely that the drug was responsible for both these conditions.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

The key to the science behind the whole thing is rather complex (the body uses the same beta receptor that raises blood pressure to suppress collagen production, thus you block the receptor, and you simultaneously ramp up collagen production), but can be found here:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713

In my own case, I noted that over the long term, stopping the beta blocker is making it easier for me to get a handle on my peyronies, in fact recently I have gotten to the point that I can no longer feel the plaque which was rather obvious before.

As for the role of metoprolol in peyronies, I really doubt that metoprolol CAUSES peyronies, rather I suspect that metoprolol makes one more susceptible to peyronies in the event of some unrelated trauma.  But I also feel that metoprolol (or any other beta blocker for that matter) makes peyronies much more difficult to manage due to its effect on blood flow and collagen.

Thanks George, maybe we will improve to the point where we dont even notice it someday.

Re: Lunchboxes comment on Cipro.

I had been on several antibiotics for several months due to a prostate infection:  cipro for 10 days,  levaquin for 21 days, and tequin for 30 days.  I finally stopped these because I was getting much muscular soreness.  At the time I was taking I was developing Peyronies Disease.   I had painful erections and a slight dent.  No curvature.  6 months later after stopping antibiotics I developed curvature.  During the six months before curve, I took Vit E and Potaba.

I don't know if there is a direct relationship.  I had wondered if anyone else had a prostate infection concurrent with development of Peyronies Disease.

Phil

Phil, I also had prostate infection concurrent with development of peyronie's. My treatment with cipro was for 10 days. After the treatment with cipro, my PSA number went back down. At the time my doctor gave me a choice of taking cipro or a less expensive antibiotic. He thought the less expensive one was  not as effective in reaching the prostate compared to cipro. Mark

There may well be a correlation between medications and Peyronies Disease.  It could also be the condition being medicated that is the culprit. 

I had prostate cancer.  I took no antibiotics.  Got Peyronies Disease about 1 month before surgery.

Also read the following excerpt.

QuoteDiabetes And Hypertension Are Highly Prevalent In Peyronie's Disease         

Written by Gregory A. Broderick, MD     
Friday, 14 April 2006 
BERKELEY, CA (UroToday.com) - Various comorbidities are expected with Peyronies Disease, such as diabetes, hypertension, dyslipidemia, smoking, and coronary artery disease. A small study on 40 Peyronies Disease patients evaluated a number of demographic variables and analyzed the prevalence of comorbidities.5 This retrospective analysis reported diabetes and hypertension to be highly prevalent in men with Peyronies Disease.

Another clinical study compared the severity of penile deformity and penile blood flow parameters in Peyronies Disease men with diabetes only (n = 59, Group 1) and Peyronies Disease patients without any risk factors (n = 109, Group 2).6 All patients underwent penile duplex Doppler evaluation and were categorized into specific vascular groups using published criteria. Group 1 patients were older and their mean degree of penile curvatures was significantly higher than in Group 2 (45° vs. 30°). The more severe category of curvature (> 60°) was more frequently observed in Group 1 (27% vs. 5%) and, similarly, the rate of ED was more common in this group (81% vs. 47%). Group 1 exhibited lower peak systolic cavernosal arterial flow values and documents significantly higher rates of arterial insufficiency and mixed vascular disease. Pain with erection was, however, significantly higher in Group 2 (39% vs. 25%) and the non-vascular etiology was 2-fold more frequent in this group. This analysis suggests that diabetes increases the severity of Peyronies Disease and is associated with a significantly worse vascular status.

References:

Davila HH, Garcia JE, Broderick G, Carrion RE. Demographic characteristics and the prevalence of comorbid conditions in patients with Peyronie's disease. J Sex Med 2005; 2 (Suppl 1):22 (Abstract #28).
Kendirci M, Trost L, Sikka SC, Hellstrom WJG. Diabetes mellitus is a risk factor for increase severity of Peyronie's disease: a comparative clinical study. J Sex Med 2005; 3 (Suppl 1):36-7 (Abstract #72).
Addtional References

Summary of SMSNA Meeting, New York, New York, November 17 - 20, 2005
Author: Wayne J. G. Hellstrom, M.D., F.A.C.S.
Reviewed and Edited: GA Broderick

SOURCE: http://www.urotoday.com/287/conference_reports/highlights/diabetes_and_hypertension_are_highly_prevalent_in_peyronies_disease.html

It's a tough call! :-\

Beginning in my late teens I was having urinary tract infections and prostate infections over and over for nearly fifteen years and taking everything from sulfa drugs to cipro for them and never during that period of time did I get peyronies.  So I think that, indeed, there are simply a lot of factors that play into this equation.  It would not surprise me if both the infections AND the treatment AND perhaps other more subtle factors (possible borderline hypertension/diabetes, etc) were all playing a part in creating a vulnerability.  And then some minor even unoticed trauma that ordinarily would have been uneventful occurs and whammo, all of a sudden this complex chain of events combines to produce a seemingly irreversable descent into peyronies hell.  All it takes are just the right combinations of conditions that combine together to effect circulation, inflamation, blood chemistry, etc, to produce the dread progression.  So, in the end, we know that poor circulation is bad and we need to attack that.  We know that inflamation is bad and we need to attack that.  And we also know that certain aspects of blood chemistry are bad (ie. serum cholesterol, serum glucose, homocystine, CRP, serum calcium, etc.) and we need to attack those.  We also know that hypertension is bad and we need to keep that under control.  That is the bottom line.  But these drugs certainly could be playing a less than helpful role as well.  In the case of beta blockers, the problem is rather easy to spot.  The same beta receptor that adjusts blood pressure also adjusts the bodies rate of producing collagen, the offending substance involved in peyronies.  This is a known phenomenon.  Thus you create a beta-blockade with one of these drugs and you ramp up collagen production to the max and saturate the bloodstream with it, sort of a similar effect to sky high cholesterol, the risks go up.  With cipro and its analogs, the pharmalogical connection is perhaps a little less clear at this point.  It would be interesting to look into that side, but I don't know whether the appropriate research is out there.  The other problem with avoiding cipro is, unfortunately, unlike beta-blockers, where there are usually a significant number of effective alternatives, in the case of cipro, there are often much fewer treatment alternatives.  Cipro is the 'big bomb' of antibiotics that typically does the job where not much else will.  But certainly, having peyronies would make me think twice about it, and probably either take as little of it as possible or try to find an alternative.  By the way, for those having UTI problems, there is what looks like a great natural product out there called D-Mannose.  It is a preventative supplement made from cranberries.  They have basically identified the substence in cranberries that prevents urinary tract infections and reduced it to a pill in highly concentrated form.  It is actually a sugar that is not absorbed by the body and is excreted via the kidneys.  It has the unique quality of being very 'sticky' and when it touches bacteria they stick to it and are carried out with the urine.

I to had a prostate infection when my Peyronies Disease began.  Like some of you mentioned, thats why I was on Levaquin.

Without even trying, look how many men with a connection between prostate problems and Peyronies Disease we have identified.  I know of more on this board. 

The scary part may be how many we don't know.

Good incentive to go get it checked, guys.  :o    <--- my expression during a DRE

Note to all:

My experience as a counselor for prostate cancer, Peyronies Disease and other health problems has given me the benefit of talking with many men. Getting to know a person on a first name basis was the uttermost thing that we counselors had to do immediately after being assigned to a patient. We use icebreakers, jokes, and just about anything to get the patient at ease with us and being able to communicate on the same level.

Have no way of knowing how many men and their wives that I have discussed men's health problems in the past 11 plus years. The main thing that has come forth in these conversations is the fact that most men just do not want to open up to anyone about their private parts, sexual life, and/or the inability to perform. Much less, they are very reluctant to discuss the physical size, shape and other problems with their penises, testicles and related physical problems in that department.

Now as more and more prominent men in high places around the U.S. and the world, men are "coming out of the closet" so to speak about their sexual problems, especially prostate cancer. As they are getting their DRE's, PSAs and other tests, Peyronies Disease is now being discussed more and more with their doctors and urologists. This is a good start. But, bottom line to this is that we must continue to spread the word about men's sexual health problems and seek to tell the world about them. The more publicity that is afforded these problems, the more men will come forward to get checked by their doctors and urologists.

Regards to everyone, Old Man

This topic keeps coming up.  I set up a Q & A in the off topic section.  I think it is a good topic to have so guys can ask questions anonymously and get straightforward, real world answers.  All you guys who have experience in this area, keep an eye on this board.  We might just save a life doing so.   :)

Liam

While investigating alcohol poisoning, I found this reference.  Diabetics have, of course, a higher incidence of Peyronies Disease.

QuoteSevere drunkenness and diabetic coma can be mistaken for each other on casual inspection, with potentially serious medical consequences for diabetics. The major physical finding they share is the sickly-sweet odour of ketosis on the breath; alcoholic ketosis and diabetic ketosis are both marked by the presence of acetone and other ketones in the bloodstream, although the ketones are produced by different metabolic pathways in each disorder. Measurement of the serum glucose and ethanol concentrations in comatose individuals is routinely performed in the emergency department and easily distinguishes the two conditions.   From Wikipedia

Liam:

From my experiences working with guys on men's health problems, I have discovered that many with a diabetic condition develop Peyronies Disease. Alcohol and diabetes does not mix of course, so there is a conflict with their combination.

Since diabetics usually experience a classic case of ED, the lack of normal erections seem to cause atrophy of the penis. Therefore, these guys are more likely to get Peyronies Disease due to the lack of normal as well as nocturnal erections. Have worked with several guys in this category and know firsthand of their problems.

Regards, Old Man

I was thinking the 2 may have a similar mechanism for causing ED and Peyronies Disease.  Just a thought.

Liam:

I concur 100% with your thoughts. Regardless of what some think, alcohol is not an agent to help with erections, but it can in fact reduce the ability to obtain erections if abused. Have had family member who were alcoholics and they lost their ability to get and maintain erections. After going through the AA programs, they regained some of their libido again, but were never the same as before their binges.

The same applies for diabetics since that disease causes loss of blood flow and affects the nerves somewhat. My mother was a diabetic and she lost her libido before my dad died and the MDs, told her it was due the diabetic condition.

Who knows for sure?

Regards, Old Man

As long as we are on the subject of what NOT to do if you want to get relief from your peyronies, I think smoking, etc. is another prime candidate along with alchohol.  Exposure to cigarette smoke  has been shown to case actual measurable vascular damage.  I am thinking that this is not what I want to expose myself to if I am struggling to overcome peyronies.  Just my two cents on the subject.

- George

George, I'm right there with you, brother.  I am an ex-smoker.  Even if smoking has no effect on Peyronies Disease, there are about a million reasons  not to smoke.  My breathing is so much better since quitting.

BTW, I was smoking up until the time of Peyronies Disease and prostate cancer.  My surgeon said, "Help me out and quit smoking."  I did.  He may have saved my life twice :).

Please understand this is pure conjecture.  I am proposing a what if scenario for discussion.

Can a trauma cause scar tissue without the traditional "plaque".  Lately we have had several post  describing Peyronies-like symptoms linked to a trauma, most early onset.  Either the distribution in the age of onset is different than described in literature, this discussion group attracts more younger people (plausible), we are seeing different conditions,or a combnation of any or all of the preceding. 

Without an objective diagnostic test, it is hard to know.

Liam, that is a fascinating thought.  As I understand it, tissue is composed of various ratios of collagen and elastin.  I have no specific reference for this assertion at this point, it is just what I have gathered along the way.  If anyone understands things differently, then please feel free to jump in and correct me.  But if this is true, then 'scarring' is likely a gradual process wherein there can be a very defined lession as in a plaque, or there can simply be compromised tissue with abnormal collagen to elastin ratio and unnatural 'stiffness' as a result.  The other thing that I think is important is that normal tissue, both collagen and elastin, is 'cross-linked', which gives it significantly more strength and permanence.  Thus the absence of 'cross-linking' would occur more in the case of tissue that is inflamed and in the process of trying to heal, and, in the case of peyronies, sort of stuck in a neverland of a continuous healing process that never finds a normal completion.  So, for sure I can imagine cases of 'damaged' tissue that is abnormally thick and stiff, but not so much so as to be a defined plaque.  It would just sort of blend in on the margins with the surrounding normal tissue.  And I would suggest that part of the normal healing process might be for the collagen to cross-link, forming a hard scar and then to experience collagen 'turnover' where old collagen is discarded and replaced with more normal ratios of new collagen and elastin, thus causing the hard plaque to gradually soften and disappear and then for the affected tissue to gradually soften more with continued turnover and gradually become normal.  Of course this is admitedly all just pure speculation on my part, and there is plenty of room for further discussion.  For me all of this thinking goes much further than just peyronies, since I have gradually progressing hypertension which I would most certainly like to find a way to at least arrest if not reverse.  And hypertension, for those of you who may not be aware, is basically caused by 'angina' of the kidney, where the arteries of the kidney's sustain a similar sort of damage to those of the heart in the case of heart disease.  So those are the 'plaques' I would really like to get rid of and that is the challenge I face.  (Appologies for off topic comments)

- George

This is in response to a question asked earlier.  I had to be prompted to reply  :-[ because of my forgetfulness (sorry).

Lately I'm telling people I don't have a bad memory, just a good forgeter.

I have looked all over with the help of my wife (doctor of audiology) and found nothing. 

In our experience, we do otoscopy  as part of a screening process.  Thus, we see a good cross section of men (few women).  Scarring on the tympanic membrane is fairly common.  It may be caused by a perforation.  More common is chronic middle ear infection (otitis media) as a baby.   Infections in the ear canal (otitis externa or in some cases swimmer's ear ) can also cause scarring.  I was looking in a man's ear with swimmer's ear and he asked me how it looked.  I told him, "soggy bread sprinkled with blood".  Often, we hear stories of how the baby was crying and hurting.  Then, all of a sudden, it stopped and the pillow had nasty stuff on it.  That was from the tympanic membrane rupturing and relieving pressure.  Tubes in the ear allow fluids out and air in.  Sometimes it is hard to see a scar left from PE tubes.  But, even without rupturing, the pressure exerted on the TM can be enough to cause scarring.

The good new is, except in very severe cases, it really doesn't hurt anything.  Most of the time there is no hearing loss associated with scarring and when there is it is slight.

If you find any info on this subject, I would love to read it.  Based on experience, I am doubtful of any connection.  I do have an open mind on the subject.

As we discover or uncover possible helpful ways of dealing with Peyronies Disease, please recall that all of the things that we do here routinely to HELP can also HURT us.

Examples: 1) Use of a VED has been cited as a cause of Peyronies Disease. We do not know the details of his use (or more likely abuse) of the VED; it was a man using it for ED and to enlarge his otherwise normal penis. He ended up with Peyronies Disease.

2) Use of Trazadone has led to priapism (recently cited case reports where the priapism was treated with NO donors Viagra and arginine, and the TGF inhibitor Pentox)(I think...). The point was (the good news) that the combination prevented the development of fibrosis. The bad news is that the Trazadone that was used to acheive sleep (dose not reported) caused the priapism and led to severe penile damage.

3) Use of Viagra has led to worsening of Peyronies Disease or "caused" it.

I thought I would throw these out for discussion - I am still on vacation and not able to access my library of references. My point is that we need to be very cautions when we recommend possibly therapeutic steps, without a complete clinical knowledge of the person to whom we speak. If we chose to self-medicate, we need to start with very low doses, and go up from there. In general, I believe that the risks are greater with oral or injected medicines compared to topical meds, and that the risks of dietary supplements (ie MACA, Epsom salts, ALC) are less that those of pharmaceutical grade medications (ie pentox, viagra, trazadone).

In Internet jargon, YMMV ("Your mileage may vary"). But more than a bad ride, we may make things worse in our desperate search for improvements. God knows I am willing to do to myself what I would never supply to a patient, and I also know that I am not a perfect guinea pig either - I cannot extrapolate to others what might help me (or might not help me)(or ComeBackid...) ;)

Back to your regularly scheduled program.

Tim

I'm looking for information between Peyronie's and other diseases, specifically pulmonary fibrosis and polyneuropathy.  Two years ago, I was a reasonably healthy 53-year old man, but I became very short of breath.  At that time (2004) I was diagnosed with pulmonary fibrosis, which has now been re-nomenclatured as interstitial lung disease.  Within the last two years, I developed polyneuropathy in both legs and now Peyronie's.  Is there a connection anyone is aware of?  I have already researched scleroderma, lupus, and other connective tissue diseases, and none of them really seem to fit.  It does seem odd to me, though, that all this happened in such a short period of time, and I have to believe that there is some connection, somewhere in this.  I would appreciate any thoughts anyone might have.  Thanks.

We had discussed other conditions similar to Peyronies Disease and problems in diagnosis.  While researching Scott's situation, I found this.  There were two links that didn't work.  I added the bold print so you would not waste your time :).  If you are curious, they are on the source cited below. :)

QuotePartial Thrombosis? Partial Priapism? Cavernous collagenosis?
Dr. Antonio Martín Morales presented a case of a 57 years old man, who suffered sudden pain and induration in the crura of the right corpus cavernosum, not related trauma or unusual (aggressive or hard) sexual activity A "tru-cut" biopsy of the mass, was informed as "connective tissue highly collagenized". Figures may be seen on LINK IS INACTIVE Dr. Ignacio Moncada suggested probably a partial thrombosis of the corpus cavernosum. He referred to a recently published paper in European Urology by Goeman (Eur Urol 44: 119–123, 2003) describing three similar cases with similar MRI results. Dr. Andik Wijaya suggested a therapeutic trial with a corticosteroid and NSAIDs. H Ghanem suggested investigating –as in cases of venous thrombosis- to exclude a hypercoagulable state. Dr. Sidney Glina suggested partial priapism and provided a review on literature including 13 references. Dr. Shedeed Ashour suggested a trial with POTABA and Tamoxifen, while Dr. Sudhakar Krishnamurti suggested that it is not common for Peyronie's disease to invade the corpora so extensively.


--------------------------------------------------------------------------------

Dear friends:
I'd appreciate very much your input on this case.
57 yo man, who present with a sudden pain and induration in the crura of the right corpus cavernosum, 20 days on duration. Neither trauma nor unusual (aggressive or hard) sexual activity took place at any time and the last sexual intercourse was 15 days prior to this event. He complains of HBP (Rx ACEi) and is on PDE5i. Last standard dose 5 days prior to the event with a very hard erection and no ejaculation. He doesn't explain the reason for this action, although denies any manipulation or stress over the penis. Since onset he has consulted with many urologists and underwent MRI, showing an slightly enlarged and solid crura of the right corpus cavernosum, well delimitated, anyhow and a respected urethra (see figures at: LINK IS INACTIVE) A penile Doppler ultrasound, without vasoactive drugs was also performed, which showed normal arteries and no veins, concluding cavernous thrombosis. A "tru-cut" biopsy of the mass, was informed as "connective tissue highly collagenized", suggestive of Peyronie's disease. Currently he's on colchicine and vit E, the pain is slowly going down but the hardness of the corpus cavernosum remains almost the same. No signs of acute inflammation are visible and the crura can be easily recognized through palpation, I mean, penile structures are respected and the process seems to be confined to the crura itself. Erections are good but still slightly painful. No problems with voiding. I've recommended him watchful-waiting because he can cope with the discomfort/pain.
Any suggestion regarding etiology or any treatment apart what he's currently receiving?
My best regards

Antonio Martín Morales
Hospital Carlos Haya
Unidad Andrología, Servicio Urología
AMARTINMORALES@terra.es


--------------------------------------------------------------------------------

Dear Antonio:

This case is probably a partial thrombosis of the corpus cavernosum. There is a brilliant paper recently published in European Urology by Goeman (Eur Urol 44 : 119–123, 2003) describing three cases like yours with nice MRI of the penis. They suggested conservative treatment although they recommended systemic anticoagulation. In all three cases, the thrombosis resolved spontaneously over several months without complications.

Warm regards,

Ignacio Moncada

Source:  http://www.issm.info/prod/system/main/index.asp?page=/prod/data/issirlist/digest08.htm

After further surfing the net, I found something relating tympanosclerosis to Peyronies Disease.  Not exactly scarring of the eardrum, but, close.

Quote
Tympanosclerosis
Tympanosclerosis is a form of membrane thickening produced by hyalization. It results from chronic inflammation or trauma; often in association with the insertion of ventilating tubes.
Source: http://www.aap.org/otitismedia/www/vc/ear/rvw/rvw17.cfm

QuoteThe first signs of the disease were made by Andrea Vesalio in 1550, but the first substantial clinical description is found in one of the writings of Francois de la Peyronie, surgeon of the army of Louis XV in 1743.
The disease occurs at its maximum to those between 50 and 65 years of age but may also appear at a young age. It is accompanied with diabetes with a certain frequency, and gout, hypertension, and ateroscelerosis. Moreover, there may be a series of microtraumas or traumas due to the penis; sometimes subsequent traumatism occurs during sexual activity. The disease more frequently occurs together with other pathologies of the connective tissue (for example, Dupuytren disease or obvious fibrosis, the fibrosis of the auricular cartilage, timpanosclerosis and arthritis, etc.).
Source: http://www.andrologia.org/eng/noduli_engl.htm

I really have to wonder about the relationship between stress and peyronies.  Chronic and repeated acute stress can result in the brain stimulating the adrenal glands to release some very nasty stuff.  Things like epinephrine, aldosterone, and cortisol are involved in the sequential chain of events.  Aldosterone, especially, is a major contributor to collagen ending up in all the wrong places.  I know that all of this has been brought up before, but I think it merits repeating.  The same stress response that contributes to heart disease, stroke and hypertension may well play a part in the development of peyronies.

Liam or Anyone Else Who Might Know,

I saw an oblique reference mentioned in passing in one of Liam's old posts regarding a link between cholesterol and Peyronies Disease.  Where can I find this?

Scott

I don't have time to do this myself, but one way to dig up old stuff is to click on a name, and review previous posts. It allows you to go quickly to the one you are looking for. For instance, I got a link mentioned to me about where to buy propionyl L-carnitine cheaply and in bulk. I couldn't remember who ahd said it or where. So I reviewed my posts, and found a request by me for that information, and then went to the thread and found the answer (by scrolling down to a date close to my post).

Also, I find that some people are less long-winded than me, but have a lot of good stuff to say. Reviewing what they posted is a pretty good way to ger information.

Tim

Quote from: George999 on August 11, 2006, 08:13:32 PM
I really have to wonder about the relationship between stress and peyronies.  Chronic and repeated acute stress can result in the brain stimulating the adrenal glands to release some very nasty stuff.  Things like epinephrine, aldosterone, and cortisol are involved in the sequential chain of events.  Aldosterone, especially, is a major contributor to collagen ending up in all the wrong places.  I know that all of this has been brought up before, but I think it merits repeating.  The same stress response that contributes to heart disease, stroke and hypertension may well play a part in the development of peyronies.

I'm curious about this too.  I've never been one to handle stress well, and my Peyronie's came on suddenly at the exact same time where I was the most stressed I'd ever been in years: just moved across the country, selling a house (and repairing it after it was broken into while vacant), buying a house, buying a car, starting a new job, all happening at once.

I know we all handle stress differently but the level of stress I was under was the greatest I'd ever experienced at one time.  And Peyronie's disease just happened to hit me at the same time.  Coincidence?

deep sigh of relief... all the stress is gone now...  yet Peyronie's remains.

http://www.diagnose-me.com/cond/C178578.html

I tried looking for my reference and so far it has eluded me.  I found this site on the web that mentions high cholesterol as a risk factor for Peyronies Disease.  Nothing too exciting, though.  If I can remember what I said or I can find my own post, I'm sure that will help  :-[.  I miss my memory  :)

So does that mean that high cholesterol is a possible cause of peyronies?  Or does it indicate that there is some other 'factor X' that is causing both high cholesterol AND peyronies?  I suspect the second possibility.

They have also now discovered a statistical link between carpal tunnel syndrome and diabetes, believe it or not.  Here again, I think their is some common metabolic problem causing both.

And I would suspect that somehow good old PDE-4 and PDE-5 levels  are activity are involved.  Stress hormones agravate both of these along with the whole RAAS (renin-angiotensin-aldosterone-system).  And new research is indicating that it doesn't take actual vascular damage to the kidney to energize the RAAS system.  Stress alone can do it on a low level.  And how many people get their PRA levels (plasma renin activity levels) checked regularly?  In reality, nothing gets checked until after the horse is out of the barn.

And then you look back at the top of the chain where all this cascade starts and you discover that it begins in the brain itself and some people are susceptable and some people aren't.  Genetics?  Or exposure to environmental neurotoxins like lead?  We know that lead (just one example) screws up the ability for children to learn.  Perhaps lead also screws up the ability for the brain to adequately manage stress and the fight/flight response.  Perhaps long term low level exposure to lead leads to a hair trigger stress response syndrome that eventually results in physiological damage that is difficult to trace back to its original cause.  To me it is kind of interesting that the generation that is most affected by hypertension, diabetes and all sorts of other odd malidies is the generation that was exposed to low levels of environmental lead for decades as it was spewed from vehicle tailpipes in copious amounts.  Oh, never mind, just speculation.

- George

Geo999,

Some interesting thoughts.  I wonder how many of us have high blood pressure and are diabetic or have blood sugar issues.   

I can relate to some of the symptoms mentioned that may be a cause of peyronies. It was not until I discovered that I had high blood sugar( borderline diabetes) and higher than normal cholesterol that the onset of peyronies occurred. I also have liver problems brought on by years of alcoholism and prescription drug abuse. I was under a great deal of stress following the death of my daughter. All of these add up to a messed up immune system. I wonder how many of these symptoms other guys have?   Keep the Faith...Blink

Liam:
I finally tried a Google search for "Peyronie's" and "tympanosclerosis" together and turned up the following.  To save time, search each page (Control/F) for the either the word eardrum or tympanosclerosis.

http://www.intelihealth.com/IH/ihtIH/EM/9339/10519.html

http://www.infertility-male.com/erectdys/peyronie.htm

http://www.med.ucla.edu/modules/wfsection/article.php?articleid=191

http://peyronies-disease-help.com/peyroniescause.html

http://64.233.161.104/search?q=cache:BBuRkCu-aWsJ:medhlp.netusa.net/perl6/urology/archive/31.html+peyronies+eardrum&hl=en&gl=us&ct=clnk&cd=2

The odd thing is that all of these mention it as related in a minor way but I haven't heard of (or even seen cited) any studies that actually turned up the relationship.  If the source is simply anecdotal (from audiologists who also practice urology?), it should be traceable to some report, wouldn't you think?  I only know that my own eardum scar was casually revealed to me in a routine physical a few years ago (shorthly before Peyronies).

The elusive reference may be cited at the end of one of these four journal articles that I can't access but which are excerpted by Google as shown:

Current Opinion in Urology. Volume 13(5):417-422, September 2003.
"Summary: Peyronie's disease consists of an acquired penile deformity caused ... and fascial contracture, tympanosclerosis, diabetes, gout and Paget disease. .."

The Journal of Urology - Volume 169(4) April 2003 p 1234 ...
"Peyronie's disease has also been reported to occur in association with Dupuytren's contractures, plantar fascial contractures, tympanosclerosis as well as ..."

Current Opinion in Urology - Volume 8(3) May 1998 p 203 ...
"...In addition, Lederhose's disease and tympanosclerosis are seen in patients with Peyronie's disease, but are rare."

The Journal of Urology - Volume 171(6, Part 1 of 2) June 2004.
"...Reports of an association between Peyronie's disease and Dupuytren's contracture, 5 plantar fascial contracture, tympanosclerosis, diabetes, ..."

Here is idea that I thought might have something to do with the cause of some Peyronie's Disease, especially if an injury is not thought to be the cause.  I could be all wrong in my assumptions but I hope this may start a discussion that leads to further understanding. 

I read somewhere that Peyronies Disease in some men may be an autoimmune problem-that is the body is attacking itself.   I am not a medical expert but I understand that the so called attack is an imflammattory response to a perceived injury or other insult to the body.

An autoimmune over response will damage the part of the body that is attacked.  Could that be what happens to those of us who develop the disease without apparent injury?

There have been posts on this thread which discuss a Peyronies Disease relationship of one kind or another to diabetes-gout-lupus—these are diseases which involve excess inflammation as are many others that medical science is now discovering.

I have been reading about inflammation lately because my wife have been recently diagnosed with Crohn's Disease which is autoimmune disease characterized by excess inflammation.  In my reading I came across a book called "Inflammation Nation" by Dr Floyd Chilton.  In this book Dr Chilton proposed that our epidemic of inflammation related diseases is caused by our western diet (oh great—another diet book) 

His research and studies are very convincing and the book makes a strong case for the need to reduce excess inflammation in our bodies.  I will not bore you with the details but if you are interested in more information his web site is www.inflammationnation.com

I may have put two and two together and come out with five but I know that you will be gentle with be when you tell me I am all wet.

Thanks

Dillon

I am absolutely convinced that inflammation is a major contributor and perhaps sometimes the instigator of peyronies.  I am also convinced that there is some sort of autoimmune element to that inflammatory syndrome.  And I have been taking every supplement I can to suppress inflammation and am convinced that doing so has been a tremendous help for me.

The direction this thread is going in the last couple of days is very interesting to me.  Is it possible that inflammation is a *symptom* of autoimmune disease, rather than the other way around?  Tim pointed out to me that there are probably different pathways to the same disease condition, i.e., Peyronie's; would this then imply that there could be different pathways to a solution?  In other words, if the cause originates in an autoimmune disorder in one individual, would his solution to Peyronie's be different than that of another individual whose Peyronie's arises from injury?  Or does Peyronie's develop because of an underlying predisposition just waiting for a trigger?  Is it possible that other, silent things are going on in one's body, and Peyronie's is the only visible symptom?

Somebody help me with this.

At a glance, it seems that a systemic disease (like an autoimmune disorder) cannot be the cause of Peyronies Disease because why would only some parts of the penis be affected? IOW, I would expect that the entire shaft would become involved. This is a conceptual problem that I believe ties up theoreticians in knots unnecessarily.

It is more likely, IMO, that there is a combination of factors that favor the development of Peyronies Disease. There are factors related to aging (it is more common in older men), and this probably has to do with the scavenging pathways called "apoptosis" or programmed cell death. In this model, the cells are initially organized with fibrin and deposition of collagen because of signals of an injury in the local tissue. But the shut off signal never seems to come, and the remodeling back to normal does not happen. As a *concept*, this is invoked for many age related problems, and why one man is predisposed to it more than another is unknown.

In this model though, there is still a root trauma. The concept of "micortrauma" has been invoked to explain why the distribution of the disease is spotty. So if we assume that there are continual problems with microtrauma, and repair, then some of these micro trauma will do badly, and not go into their shut-off phase wherein remodeling back to normal happens; they stay stuck in the more inflammatory model that is involved with recruiting inflammatory cells and leading to scar formation.

In an autoimmune model, we make antibodies to something in the tunica, and the antibody/antigen interaction causes the inflammation. Then the rest of the story should be roughly the same; the processes of inflammation are off and running. In a sense, it doesn't matter what the initial pathway is, but in finding the common final pathways that cause the problem to get worse. But to think about how to prevent it from getting worse - to shut off the supply of inflammation triggers - or to make it go away, then we have to think about those basic mechanisms, and what might target them.

Here is the abstract of one study on autoimmune disease: HLA typing for class I and class II antigens was done in 52 unrelated patients suffering from idiopathic Peyronie's disease. The controversially discussed association with the HLA-B7 cross-reacting group could not be confirmed. Marked deviations of antigen frequencies were observed for HLA-A1, B8, Cw7, DR3 and DQw2 compared to healthy local controls. After correction of p-values, A1 (pc less than 0.05) and DQw2 (pc less than 0.01) remained significant. A possible association of Peyronie's disease with markers of the HLA-A1, B8, Cw7, DR3, DQw2 haplotype, as first described here, would suggest autoimmunological factors in this disorder of otherwise unknown etiopathogenesis.

Given that I have mild DC and mild (but bothersome lately) Peyronies Disease (and pain in my feet that might also be related!), it makes sense to see if anyone wants to gather this data in me. What I might do with the results is another matter - not a clue there.

Tim

Rico, I really have no opinion on Thacker's Formula since I have never used it.  I think there are others on this forum who have and they would be the appropriate ones to comment on it.  As to the theory behind it, I think it is interesting and definitely reasonable.  My only concern would be that anyone using it use MEDICAL grade DMSO and not INDUSTRIAL grade DMSO and that they be extremely careful with it because it does not discriminate about what it processes transdermally.  We have a skin for a reason and part of that reason is to keep certain things from entering our tissues.  The whole purpose of DMSO is to defeat that protection and that is OK as long as we are extremely careful as to what we allow to be passed through to our tissues.  Those are my thooughts on that subject.

[ I have intentionally deleted this part of my post.  I'm glad that some of you took it humorously, you are very gratious, but upon reflection, I have come to realize that it was somewhat offensive, unfair and inappropriate or certainly could have been taken that way, and I prefer that it not end up in the archives.  My appologies to Rico, the rest of the paragraph stands.]  When I think of all the other things I could be afflicted with, I am thankful to only have to deal with Peyronies and Hypertension.  It can be worse.  Scar tissue is ALWAYS a bad thing.  Its worse when it results in peyronies, and it can be far worse than that.

As for autoimmune issues and inflammation, I think that can be something like a chicken and egg scenario as both can tend to incite each other.  I think it is revealing that prednisone is used not only for autoimmune disorders, but also for some types of severe inflammation.  These two conditions are really hard to separate and in many ways go hand in hand.  On the same level, one can consider Lupus.  Lupus is a classic autoimmune disease which is characterized by out of control inflammation.  So is it the autoimmune problem that is causing the inflammation?   Or is the inflammation and the bodies inability to contain it, triggering the autoimmune response?  Another open question.  And then one has to consider chronic stress combined with sedentary lifestyle, which results in a huge build up of biologic energy and cranks all the bodies defense mechanisms into high gear when there is no enemy to do battle with.  This process can't go on forever without something giving way.  And the first thing to go might just be your penis if your a male, and quite frankly, I prefer that to having my heart give up, or my pancreas or some other vital organ.  Sure its inconvenient and can sort of ruin ones lifestyle, but at least I am still very much alive and can continue to enjoy friends and family in this earthly setting.  And while dying is not the worst thing in life, there are other more horrific scenarios, like ending up in long term care barely able to function.  In short I think all of us posting on this board have a lot to be thankful for.

Another issue with inflammation is one of its key mediators, Omega-6 fatty acids.  Omega-3 and Omega-6 fatty acids vi for position in the human body.  Omega-3's are anti-inflammatory and Omega-6's are pro-inflammatory.  People exposed to diets overly rich in Omega-6 fatty acids are inviting problems with inflammation.  And people with Inflammation problems should carefully  monitor their intake of Omega-6 fatty acids and increase their intake of Omega-3 fatty acids which is why I take fish oil supplement.  There is lots of research on this out there.  It is kind of complex, so I am not posting it.  But here is an interesting article on the subject:  http://www.cbn.com/health/naturalhealth/drsears_ArachidonicAcid.aspx (http://www.cbn.com/health/naturalhealth/drsears_ArachidonicAcid.aspx)  Unfortunately it is somewhat of an infomercial and I detest having to post those types of links, but it most clearly describes the problem in laymans terms.  Please note that I am not trying to promote Zone Labs or their products.  It is just that this was the most easy to grasp explanation of the Omega-6 problem.  For something a little deeper on the same subject there is this article: http://www.arthritis.co.za/arachid.html (http://www.arthritis.co.za/arachid.html) , note that Arachidonic Acid (sometimes referred to as AA)=Omega-6 fatty acid.  And then of course there is http://www.inflamationnation.com (http://www.inflamationnation.com) .  -George

Yup, Rico, you are so right.  If my peyronies was as severe as some of the posters here I would be mighty concerned about it.  Its just that I am committed to the notion that all scar tissue is bad and unnatural.  The normal healing process should get rid of it.  And if I even only had it on my "ass", I would still be mighty unhappy about it, although, as you point out, at the same time, mighty thankful for it not to be in a worse place.  I certainly didn't mean to belittle anyone's pain and I appologize to all who might take my comments in that way.  Rico you are most certainly right on that point!  So  I didn't mean for my comment to sound harsh, but somehow, I knew you could handle it.  You are a great guy, Rico, and its great to have you here as part of this discussion.  So together lets continue to explore the subject and come up with approaches that work, while we wait forever for BioSpecifics to come up with the dough to get their collagenase product through the trial process.  By the way, I have read that it costs $800 million bucks to get a product (any product) through all the trials and approved by the FDA.  Ever wonder why natural remedies never get discovered?  There are apparently at least 800 million reasons why!

Rico and George,

Excuse me if this is out of line, but as an observer I found both great truth and great amusement in both of your posts.  In fact George, we are all very fortunate even if some more than others.  It could be worse.  Quadriplegics or emphysema patients cannot have intercourse plus any of the other things we enjoy daily.  I would give a lot to have my flawless unit back but I would not give my eye sight.  Would I give my other senses? I would not give or my legs.   I would consider giving one.  I could go on and on.  No offense but I would rather live in the USA with a messed up penis than in Iran or North Korea with my old one back.  It is very healthy to stop and take stock of what we have and take time to enjoy it because as we all know, there is no guarantee we will always have those blessings.

I enjoyed the passionate, and maybe unintentionally humorous lines.  It is seldom I get to be enlightened and amused at the same time.  It might be my mood but I must admit that I laughed out loud.

Ditto on what Hawk said.  I *thoroughly* enjoyed the subject exchange!  We do from time to time need a little more levity in these posts.  It is obvious that Rico and George like and respect one another, even if their opinions may differ a bit.  Thanks to you both for a day brightener....

I don't know if this is a good analogy, but it occurred to me that Cauliflower Ear might be a bit like Peyronies Disease:

'Cauliflower ear is an acquired deformity of the outer ear. Because the ear is precariously perched on either side of the head, it is often vulnerable to blunt trauma. Wrestlers and boxers in particular are susceptible to this type of injury. When the ear is struck and a blood clot develops under the skin, or the skin is simply sheared from the cartilage, the connection of the skin to the cartilage is disrupted.

The cartilage of the ear has no other blood supply except that supplied by the overlying skin. When the skin is pulled from the cartilage, and/or separated from the cartilage by blood (as with accumulated blood from injury called a hematoma) or infection, the cartilage is deprived of important nutrients. Ultimately, the cartilage dies and the risk of infection is increased. Untreated, the ear cartilage begins to contract on itself forming a shriveled up outer ear classically known as the cauliflower ear deformity. Once there is cartilage death and scarring (fibrosis), the resulting deformity is very difficult to reconstruct (if at all possible). Often the victim is left with a permanent deformity.'

The article goes on to say that treatment is needed very soon after the injury if it is to be effective. Sounds familiar.

Percival

I think this is a REALLY GOOD analogy that describes much of what is going on with peyronies.  Both cartilage and connective tissue (of the type involved with peyronies) or notoriously hard pressed for blood supply even in a healthy evironment.  This makes them extremely vulnerable to any loss of what little supply they have, and loss of blood supply triggers a progressive degenerative process.  So I think this is an excellent illustration of the problem.  The challenge then becomes to so rejuvinate the perimiter blood supply that healing (and restored blood supply) can progress inward to the affected tissues.  And personally, I think that this is possible, even in cases where treatment is delayed.  We just have to find out how.

im a bit confused if I have Peyronies Disease or not now. The other day when I got a erection the what I thought to be plauque strips are actually veins as I once thought was possible. I looked down at my erection and I could see both of them pulsnating, and I could feel them also. They are veins for sure. The question is why are these veins hard? I do have a small dent and a slight curve, so I think I have Peyronies Disease. But can hardened veins produce Peyronies Disease or what?

Dear Howcanthisbe<

Weren't you going to go to a doctor, instead of speculating about what is wrong? Certainly, none of us are qualified to comment on this matter.

Tim

HCTB,

I want to say this in a kind way. 

You have been saying the same thing since June.  If you had gone to the doc the first time we advised, you probably wouldn't be here now.

Stop worrying yourself into a condition.  Your symptoms do not sound like Peyronies Disease to me.  But, I'm not a doc.  There is only one way to know. 

Go find out and put this behind you.  And from here on, go get a diagnosis if you're worried about something.  Doctors get it right the large majority of the time.

Liam 

I know I was going to go to the docotr. The problem is  really truely dont have the money right now, rent is due in like 6 days and I dont have insurance.  If I could go to the doctor right now I would, not to mention I do not have a car either. I just walk on campus because everyhing is close, but the doc isnt close. Anyways I know I probably have Peyronies Disease because it seems the dent is getting worse and also ive never read about a gowing dent that wasnt associated with Peyronies Disease. Anyways I just posted to see some thoguths on it, I know nobody can tell me what I have. Thanks

Dear HCTB

There are ways to solve this problem. My hunch is that you have not thought of them, and also that you are probably isolated with your problem and not able to enlist help. If you have a family doctor with whom you have had ANY longterm relationship, or if you have a friend who knows a doc, or whose dad is a doc - somehow you have to get someone lobbying for you. To call and say "This poor kid might have Peyronie's Disease, and I know you are gonna lose a pro-fee on him, but could you do me a favor and see him in your clinic?"

We (docs) do this for people ALL THE TIME. I often waive my fee when I am asked (nicely) by someone who I know, and when it is appropriate (an example - a social worker at a local hospice tells me that a friend just got laid off and her kid is wheezing, and would I be able to help them out even though they do not have health insurance - I did.)

Another example - a campus clinic may have connections to a medical center.

Another example - a social worker with a hospital may be able to tap into a free-care fund to get your visit covered.

There are ways to solve this problem, just like there are ways to solve the Peyronies Disease. Very similar in that in both cases, we may not be talking about an ideal "solution" (i.e. you may have to pay something out of pocket; and/or your Peyronies Disease may get better but not go away).

In either event, it seems that you have not been able to put the kind of focused attention into solving this problem that you need to be putting into it. You have listed external causes for that, but I think that we are all often held back by internal limits far more than external limits. If you have to pay out of pocket, get a job to make extra money (a Starbucks employee will routinely get health benefits, for example), or DO WHAT IT TAKES to get help and to get better - then DO IT!

You are right that we cannot tell you what you have, but if you want some thoughts on it - there you have it; my thoughts! I hope that you can take charge of this and make some moves on your life that help you.

Tim

thanks Tim. Thats a good idea about the job, I know I use to work at home depot and after 90 days you get health insurance. I will see if any jobs offer the same type deal around where I live. I do not know one single person in this town as im new here and just started school 2 months back. Im working on meeting new people so im not sure what I can do right now. I will look into the job thing though. Thanks

Well, it's been 7 weeks since my inguinal hernia surgery, and 6 weeks since I first noticed the sorness and then the lump in my penis near the base. I have not had any sex acts that were rough enough to cause this malady. I saw my surgen today to ask about possible trauma to the penis during the operation (as I was knocked out). He explained how they drape off the area, and that he is very carefull to not involve any of the uro tract organs in a hernia op. He told me that even if he did clamp the penis, this would not cause Peyronies Disease. Who knows, he is the doctor. I think a strongly applied clamp could cause some sort of damage. I know it hurts just thinking about it. LOL. So it remains a mystery as to why this disease came about. Only thing to do now is apply damage control. crs

What a incredible statement from someone that probably knows little to nothing about Peyronies Disease.  A broken capillary or two could trigger Peyronie's in a person prone to the disease.  To say it is unlikely, or even "not known" to cause Peyronies Disease is one thing, but to say "It would not cause" reveals something about him as a doctor that is less than admirable in my opinion.

I think as an educational endeavor, you would have a high likelihood of being able to convince him of the possibility, if he is willing to let you apply a clamp.

csup:

I agree with Hawk's statement. Who knows what can happen by applying any force to the penis. Having had many operations myself, remaining awake during some and observed what happens in an operating room, I know the drill. Some doctors play loud music, some even watched TV during lulls in the surgery and others laughed and talked all through the procedure. I experienced some trauma to my penis during my prostatectomy and the uro surgeon explained it all to me and apologized for what happened, but I still had a bout with Peyronies Disease as a result.

So, bottom line of what I am saying is this, who knows what happened while you were asleep during the operation. As Hawk says, even the smallest microtrauma can and will cause further damage as the body tried to heal itself.

I stongly urge you to seek out one of the best uros you can find that has experience with Peyronies Disease and get an appointment with him ASAP. The wait and see attitude does not cut it in the Peyronies Disease world. Early action is always the best medicine in any situation, especially Peyronies Disease.

Sorry that you are having this problem, but hang in there, you are not alone!

Sincerely, Old Man

Old Man, Hawk,
I already have an appointment set to see a new Uro in less than 2 weeks. If he is not forward thinking, then I will find another, or another after that. My statement on damage control did not mean I was just going to sit back and let this thing take total control. I will find a way to win in the end. Too bad drinking several beers will not cure this like it used to do for my colds. LOL.

Hawk, If you meant to let me place a clamp on the surgen's um..., I would consider asking him to try it, but I don't plan on seeing him again. If my other side develops into a hernia, I will find another surgen, and this time do some research on him first. crs

If the only time a symptom presents is during an erection but the doctor never examines during an erection, he may never see the problem.

Tim,

I respect your opinion and I appear to be the odd man out on the forum on this subject ;).  I just find it hard to understand how a doctor of urology cannot detect a physical abnormality in the penis when he or she is supposed to be looking for it.  I can also think of several reasons a patient might perceive a dent other than Peyronies Disease.  As a layman, reading the onset and description of the symptoms, thrombophlebitis is plausible. 

The main reason I hold out multiple conditions causing penile deformity is "spontaneous recovery".  I believe 100% of the "recoveries" are something other than Peyronies Disease.  Another reason for this hypothesis is the differences in symptoms.  Other than the location, symptoms are not close in some cases.

I have tried to explain my thoughts in this way.  The bend in the penis is not the disease.  It is a symptom of a fibrotic disease.  The disease is systemic, but, may manifest in just one or in several locations including the penis, palms, knuckles, soles of feet, and the shoulders.  When the disease involves the penis, it is Peyronies Disease.

I am honestly not trying to be argumentative.  I think by discussing we will better understand the disease.

I hope my assessment is wrong.  I would love a spontaneous recovery.

BTW, for the new members, I have had 2 frozen shoulders and Dupuytren's as well as Peyronies Disease.

Sorry if I'm rambling.

Here is a quote from http://www.netdoctor.co.uk/ate/menshealth/205680.html offering an alternative diagnosis :

QuoteMy husband has a prominent vein on his penis






Question

My husband recently discovered what appears to be a hardened vein on the side of his penis. The vein itself is only about 1- to 2 inches long and is not painful. It feels hard to the touch even when his penis is flaccid, and is more prominent when his penis is erect.

His GP has told him there is nothing wrong, but we are puzzled as to why this has appeared almost overnight. Also, is there anything that can be done or will the vein gradually reduce in prominence over time?

Answer

I think it is very likely that your husband has something completely benign known as lymphangiosclerosis. This is a hardened lymph vessel rather than a vein, although it is similar in shape and appearance except that it tends to be less blue in colour. It feels hard to the touch even when the penis is flaccid and will be more prominent during an erection.

This is not an uncommon symptom and it tends to happen following more regular or vigorous sexual intercourse in younger men.

Provided your husband is functioning normally in every other respect, there is no need for him to worry unduly about this linear hardening. It will almost certainly resolve spontaneously by itself over the next few days or weeks.

In the meantime gentle well-lubricated lovemaking is to be recommended.

If there are any other changes that you have noticed or if things change in any way, I'd go back to your GP or local genitourinary medicine (GUM) clinic for further advice.

Yours sincerely

The Medical Team

I hate it when I post a really long and thoughtful responding post on a topic and then it says "Sorry! You cannot post new topics to this board!" The worst part is that when I hit back up, the post is gone forever...


Sucks to be me...  :-\

Tim

Tim,

That's just the forum's way of leveling the playing field for a debate between us. ;)

Liam

    I've lost post text too when gremlins attack, and it's frustrating. Try running a "backup"... before hitting "post" or "preview", I select all the text (highlight) and right-click-copy, and I have a backup that stays on the computer clipboard unless I have to re-boot. I've also started keeping a Word blank document on the desktop that I'll compose a post in and save. Then if there's a major computer or internet lockup, I can still reboot, come back online and copy the Word doc into a new post. When I'd lose a post to cyber-gremlins, I always felt it was like a digital toilet flush... watching words go down the drain with no way to stop it  ;D.

Yeah, well Liam, you were knocked down and counted out - then saved by the bell!  ;D

Tim

Yo,  Cut me, Mick!

Maybe new info for some.

Peyronie's disease and erectile dysfunction: Current understanding and future direction

Levine Laurence A

http://www.indianjurol.com/article.asp?issn=0970-1591;year=2006;volume=22;issue=3;spage=246;epage=250;aulast=Levine

Excellent article.  I notice he concurs (with me)  ;D  That penile injections can worsen Peyronies Disease.

I found this article pretty interesting.  One thing that jumped out at me is that they are finally recgonizing peyronies to be more common, the highest percentage I have seen thus far at 10%, personally I've always thought it was more like 13%, but it gets wishy washy with congenital curvature, and what exactly is peyronies.  

I also had thought that Dr. Levine had stated using viagra may actually help peyronies, because of the nitric oxide in it, I did not see that in the article but I may have missed that, my eyes are getting tired...


PS- Hawk I've always concurred with you, since Dr. Levine agrees with us, this must mean we could be MDs  :D

So...I have been succesfull to experiment and read about P.D. and how to kill it.

I'm going to help all you cats out there that have this condition because the doctors or "Specialists" I have seen couldn't do anything for me...and took $900.00 from my insurance company for what I deem as pretty useless advice.

1.  GET YOUR BLOOD TESTED...YOU HAVE AN ABNORMALITY WITHIN YOUR BLOOD IF YOU HAVE P.D.

2.  CUT YOUR DIET TO SUPER LOW CHOLESTROL INTAKE.

3.  VITAMIN E is OKAY...I overloaded on the stuff and it made me sick...so don't overload on it.

4.  If you are using the Jes Extender....BE VERY CAREFUL...IT DOES HELP ALL MEN WITH P.D. to straighten the penis...I know I have used 1 for 2 years...only to see better condition of my penis BUT it also gave me a double inguinal hernia because it pulls the abdominal muscle just 2 inches above your best friend.

5.  NEPRINOL - 2 at night; every night and 1-2 pills after a meal = SUPER MEASURABLE RESULTS while taking no more than 1000 mg of Vitamin E (with meals) each day. No Rx Needed - Side effects: Headaches & weight loss and possibly low blood pressure....so throw caution to the wind with this product. Not FDA approved...but it has worked for me...

6.  MASTURBATION = I don't give a damn what anybody has said about this topic...SEX and Masturbation will AGITATE P.D. so when you do it...use a different 'style' to keep your best friend as straight as possible...if you have SEX...don't be stupid...and put your girl on top of you if your red rooster keeps coming out of her because you are not Jhonny Holmes...play it cool...as Duane Allman would say "Eat A Peach for Peace"...then do less work...and ride 'conservatively'...if at all possible eat a peach; twice then ride...your woman won't care either way...

7.  Depending on your curvature...if you are in a sexual relationship...have your woman give YOU oral sex vs regular sex until your P.D. can begin to resolve on it's own using the "Dr.P.D.Killer" Prescription I'm writting about...any doctor who is reading this can take a walk because you guys are just too afraid to get sued for mal practice...and you don't have this problem so it's easy for you to grab your $1000.00 pay checks for a pretty worthless prognosis.

8.  Oils - I forget which oil worked best for me but there are oils that you should use on the area that is scared...

9.  You should take all of this on a daily basis...for about 8 months...I would say have your woman give you oral sex for a solid 4 months...if she's going to complain about this...I guess a 're-evaluation' should be in order because; gentlemen...what we have...CAN BE RESOLVED...but not if the person we are with are going to be narcissistic, selfish beings...who only care about themselves...none of my business...I'm just telling you all what I did and trying to save you all 9,000 worth of research...because it's my Christmas present to ALL OF YOU CATS WHO ARE GOING THROUGH WHAT I WENT THROUGH..

10...Finally....from my research you should be checked for anti-immune diseases...no that doesn't mean you have AIDS or anything...it just means your body is pumping out a chemical imbalance of some sort similar to guys who are balding...you may also have patches of hair that do not grow hair...all signs pointing to why you need to get your blood tested.

Last but not least...having P.D. is like having severe arthritis of your penis...there are ways to treat it...Potaba and Vitamin E...doesn't work...and all these doctors who say that it does...are giving you a conservative treatment...

Oh yea...you need to buy PURE vitamin E...not the junk from GNC or Wal-Mart...you have to spend money for the best stuff...and most importantly..if you can read...you should invest more time in understanding the Cause and Effect of what has happened to you...and mentally...get back in the game...not having sex for a year won't kill you...and those of you who think it will....should revisit what is more important in life...taking a sabbitical from activities that will AGITATE your problem both logical and wise...besides...review my Rx...getting head for 4 months is not a bad deal...

Gentleman.

Enjoy being.

Enjoy life.

Be Kind.

Free yourself from hate, anger, and racism.

Happy Holidays to you all.

All the best - - - Dr. P.D. Killer

OK cat, let me see if I understand your prescription:

1. Have your blood checked! - Is that for anything in particular or just to see if you have some?  All my blood tests are fine. ???

2. Eat low cholesterol - Me and many others on the forum do that, and my blood cholesterol; is very low. ???

3. Vit E is OK - then why did you say "Vitamin E...doesn't work..." down near the bottom of your post?  You then said buy the pure stuff.  Pure synthetic, pure d-alpha, pure mixed tocopherols, PURE WHAT ???

4. A jess extender will work if you use enough tension to pull your abdominal muscles into a double hernia - wouldn't it be cheaper to just duct tape a dumb bell to the end of it?  :o

5. Nepinrol, take at night and after every meal ...side effects weight loss, low BP, headaches - Don't the manufactures of all such enzymes recommend they be taken on an empty stomach so their impact will not be lost digesting food?

6. No rough sex, give oral sex - I understand this one  :-*

7. Recieve oral sex - I understand this one too  ;D

8. Rub oils of unknown origin on your scar - I have olive oil, Quaker State (10w-30), linseed oil, and PAM on hand.  Is there a preference or will any of these work fine ???

9. If you wife starts slacking off on her oral sex duties kick her out and find a new woman - That seems a bit harsh here during the holidays, especially after you made me commit to "Free yourself from hate, anger, and racism."  :'(

10. Check yourself for autoimmune diseases - What do we do if we find we have some ???  I did check myself and I found one. Its called Peyronies Disease !!! So, what do I do about that one.  Let me guess, I start back at number 1.   ::)

PS: I thank you because you did brighten my day.  ;)  Being specific with your prescription and giving some background would have helped.

Interesting "Doc" and an interesting post.  I'm not sure about this being a cure....

But, I think it is basically sound advice presented in a colorful format.  

*Low cholesterol is good.  High cholesterol has been noted here as one of the "risk factors" for Peyronies Disease

*Pure vitamin E has been recommended on this site by some of our members who are well read in this area

*Neprinol has been given a tentative nod as have a few enzymes

*Avoiding trauma has been kind of an anthem here for most.  Your "Christmas present" is one alternative (and a fun one at that) for taking it easy on the "little soldier".  Check the website for a great discussion on sexual intimacy

*Rico recommends arnica oil and maybe has a few others that he could share  (maybe peppermint for the holiday present mentioned above  ;)).


I'm not sure exactly what blood test should be run, though.  I have blood test run every three months.  What should they look for?

Can you tell us your history with Peyronies Disease.  When did you get it?  What were your symptoms?  How long did you have it?  

What is your opinion of a VED as compared to traction?

Thanks for your post.

Liam

One of the leading "risk factors/indicators/comorbidities" for Peyronies Disease has been diabetes.  This news is very interesting and very exciting.  Although not a direct link to Peyronies Disease, this may prove to be a major medical breakthrough and I feel deserves our attention.  It may even indirectly prove of help to us (as guys with Peyronies Disease) someday.

http://www.canada.com/nationalpost/news/story.html?id=a042812e-492c-4f07-8245-8a598ab5d1bf&k=63970
excerpt

QuoteThey also conclude that there are far more similarities than previously thought between Type 1 and Type 2 diabetes, and that nerves likely play a role in other chronic inflammatory conditions, such as asthma and Crohn's disease

and Peyronies Disease?

Fascinating posts by the 'doc' and Liam!  And an interesting intersection of sorts.  The concept of immune system issues which just happens to have some commonality with diabetes.  It makes one wonder just what the ramifications of having elevated blood sugar levels are EVEN if they are at a sub-diabetic level.  Certainly insulin resistance, however subtle, could along with the things mentioned by the 'doc', indicate something going wrong on the immune system level.  Also a very interesting take by the 'doc' on Neprinol.  I used it for a long time, but only one capsule per day due to the cost and concern about potential side effects and also some very real distrust of Arthur Andrew organization (I suspect them of 'astroturfing', the practice of posting phony success stories in order to promote their product).  But I have to admit, I did notice some seemingly positive effects from the amount I was taking.  I have a stash of Neprinol left.  I will probably give it another try.  As for Vitamin E, I don't know what 'side effects' the 'doc' is referring to, but I know that if you take over 800IU, you should be taking it in a 'stack' with other components or you WILL get side effects.  I have been taking 2000IU for some time now with zero side effects, but I take other stuff to deal with the side effects.  After trying close to 30 different supplements, I am finding Vitamin E most useful.  And GNC along with many other suppliers offer both el cheapo and premium full spectrum products, so I think singling out GNC for selling cheap E is a bit unfair (by the way, I am not a GNC customer and generally don't use their products).  I won't comment on Wal-Mart, but I suspect that most of what they sell is JUNK.  Thats what they are famous for and people love them for it.  Ginkgo also seems to be helping and I also have great expectations that VasoFlow will be very helpful.  But now I am having to take a second look at Neprinol in this combination.  I have to admit, I have always been impressed with the ingredients in Neprinol, but I have also read some cautionary stuff in research articles as to the use of enzymes.  Like NO they can be a double edged sword.  Certainly one thing to beware of with Neprinol, if you get it in your lungs via reflux or whatever, its nasty stuff and can land you in the hospital.  So I would certainly be hesitant at taking it at night again (which I was doing before learning of these cases).  But there is a lot of good stuff here even if it is off topic for this thread (sorry Hawk!).  I would very much like to see some LEGITIMATE third party research on the Neprinol.  I don't have a whole lot of trust in unverified testimonials when extremely high priced supplements are involved and massive doses are recommended.  So sorry, but I remain a skeptic on that one.  I will continue to trust research and personal experience over testimonials.  But one thing I agree with the 'doc' about ... this disease can be beaten, my personal experience tells me that, and I would whole heartedly concur without reservation with much of his advice.  Right now I am eating mostly fruit and vegetables in five small meals per day, watching my caloric intake with carefully planned weight loss underway, a reasonable amount of daily treadmill activity, and scrupulously avoiding any additional trauma to my penis, however mild.  And as I have stated in numerous other posts, I am seeing success.

- George

I have an idea.  Why don't we refer to that cat as Peyronies Disease Killer or just Killer.  The term "Doc" is pretty far fetched and possibly misleading.

I actually did not take his post as either legitimate or serious. 

I consider my intake of sugar extreme prior to diagnosis with frozen shoulder, Peyronies Disease, and Dup's.  I also had high cholesterol.  I have always wondered if there was a link.  Now my sugar intake is L O W and I'm eating very, very low fat (plus 10mg Crestor)!  :::closing the barn door after the horse got out:::

There is a larger condition than Peyronies Disease and the other fibrotic conditions.  I hope I live long enough for someone to put it all together.

BTW, I used to smoke,too.  They say that increases the risk for Peyronies Disease.  I believe there may be a correlation without a causal relationship.  Name a disease and smoking is on the "factors" list.  Smoking just makes an easy target.

What were the details of your improvments from traction, how much size did you gain- lenght, width etc...  We had a fellow on here doing traction, WantItStr8, haven't heard from him in awhile, by now he should have seen at least an inch gain if not two according to that website, I highly doubt he has seen this.  I have not heard from one single person that the traction has done anything for them at all whatsoever.  Please enlighten me with the details!

To Mr. "Hawk",

Could you be any more over analytical...we are not in trial, councilor, so take it easy....I'm guessing you must be in your 40's to 50's from the tone of your reply.

So for all of you other Gents; who would like to keep the Rx in tune let's go over Mr. Hawk's reply with my counter reply so I may demystify, Mr. Hawk so he may find more solace in the Rx.

1. Have your blood checked! - Is that for anything in particular or just to see if you have some?  All my blood tests are fine.

Dr.P.D.Killer: Mr. Hawk, we live in the age of the internet...all you have to do is type in "Blood Exam Peyronie's Disease" and see what surfaces but in the holiday spirit you want to attain a ION Panel.

Attain info on what the normative levels are for:

Glucose, Carbon Dioxide, Sodium, Potassium, Chloride, Phosphate, Calcium, Magnesium, Serum Iron, BUN, etc.  After your ION Panel if anything is falling out of range try to fix the problem within the best of your ability / control.

2. Eat low cholesterol - Me and many others on the forum do that, and my blood cholesterol; is very low.

Dr.P.D.Killer: Good.  From my learnings, Peyronie's Disease (at least for my case) was in part a very large Fibroid Problem that happened to be located on my penis...chances are it's the same for many men out there...so this would be the fulcrum point of the all variables on the P.D. scale...learn more about Fibrosis and how to control it; and you will see a change in your P.D. condition for the better.  

3. Vit E is OK - then why did you say "Vitamin E...doesn't work..." down near the bottom of your post?  You then said buy the pure stuff.  Pure synthetic, pure d-alpha, pure mixed tocopherols, PURE WHAT

Dr. P.D. Killer: I stated "PURE VITAMIN E" there is a difference between the Vitamin E you purchase at Wal Mart vs attaining the PURE Vitamin E...which again you can do a quick I-Net search for as I just did for you: http://search.yahoo.com/search;_ylt=A0oGkjngzIRFJIMATiZXNyoA?p=pure+vitamin+E+capsules&ei=UTF-8&fr=slv1-msgr&x=wrt

I actually don't take Vitamin E anymore but I believe the formula I did take was an E, A, C + Selenium gel tab. I had taken that for about 3 years...until the Jes Extender and began to help along with the oil along with the Neprinol...which leads me to your next question...

4. A jess extender will work if you use enough tension to pull your abdominal muscles into a double hernia - wouldn't it be cheaper to just duct tape a dumb bell to the end of it? 

Dr. P.D.Killer: Hmmm...I would say, don't quit your day job as an attorney if you wish to pursue a career in comedy...not very humorous and I had a double inguinal hernia surgery due to the Jes Extender so there are other men using that product, Mr. Hawk, and it is a relevent statement because knowledge is power...at any rate...the extender; by far; did show measurable results and improvements.  The downside is that it was painful to use each night and that it can cause your inner ab lining to promote wear and tear to allow an inguinal hernia to take it's course of action on a male; adult body.

5. Nepinrol, take at night and after every meal ...side effects weight loss, low BP, headaches - Don't the manufactures of all such enzymes recommend they be taken on an empty stomach so their impact will not be lost digesting food?

Dr.P.D.Killer: Correct.  Take the Neprinol 1 hour after each meal...or at bed time...not with your meal and not directly after your meal. 

6. No rough sex, give oral sex - I understand this one 

7. Receive oral sex - I understand this one too 

Dr. P.D. Killer - Thank God.

8. Rub oils of unknown origin on your scar - I have olive oil, Quaker State (10w-30), linseed oil, and PAM on hand.  Is there a preference or will any of these work fine

Quaker State for you, Mr. Hawk, dump an entire keg on you and that should do the trick For all others, the best oil to use is Castor Oil.

9. If you wife starts slacking off on her oral sex duties kick her out and find a new woman - That seems a bit harsh here during the holidays, especially after you made me commit to "Free yourself from hate, anger, and racism." 

Dr. P.D.Killer: I'm glad I'm not an Esquire at large...it's amazing how you can convolute something and misrepresent it; to your own personal satisfaction; that doesn't actually...prove that you did anything... other than misevaluate some content provided to you and represent it back to a general audience to convey a tone and communication that I never stated.

So it is not with out logic; nor reason; nor case studies by other cats (sorry for the slang Mr. Hawk, I'm only 19 years old so please do bare with my choice of verbiage I wish to use because I'm not my father) but at any rate all the other cats or gents who have had any relationship problems due to their P.D. problem should understand that it can be corrected but needs for total understanding that physical activity on the penis can cause it to become worse...and if someone is not going to understand that and play their narcissistic card on you, well then be so forth advised to evaluate the situation and know that you; are not alone; and that the operative action for better days ahead is: Communication; Understanding and perhaps a period of refraining from your marital or bachelor banging quota duties.  As for the added 'free yourself from racism/ hate / etc.' I never stated to leave your wife or lover...Convolution; and misrepresenting communication, yet again...that outputs your interpretation which isn't remotely close to what I had stated...

10. Check yourself for autoimmune diseases - What do we do if we find we have some   I did check myself and I found one. Its called Peyronies Disease !!! So, what do I do about that one.  Let me guess, I start back at number 1.   

Dr.P.D.Killer: Hmmm. Show me an article or a source, since you love to be so overly precise about every little detail that specifies that P.D. is an autoimmune disease and not correlated to an autoimmune disease...convolution again...you must like a lot of mixed drinks to keep mixing everything to whatever it is you want it to be...that's interesting...or not...but Mr. Hawk...perhaps you should learn to relax a little more rather than being so pretentious...until then, gents and cats I'm going to keep drinking a ton of beer, enjoying my college years and hope that this information has helped you...

PS: I thank you because you did brighten my day.    Being specific with your prescription and giving some background would have helped


Dr. P.D.Killer: For the other gents who wanted to know more about me: I have had Peyronies Disease for the past 5 years, diagnosed it myself by researching WebMD, went to see a board certified Urologist who didn't do anything for me except charge my insurance $1,000; and both my parents had past in a car accident; I have been working 3 jobs, putting myself through college; paying my bills and learning as much as I am able to about the ailment that was handed to me via fate...I researched and devoted all my time and effort to beat P.D. which included a lot of praying too...and I can honestly say that after 5 years of all my work...the P.D. scar has gone away, the curvature of my penis is no more than a curvature of any normal penis and the Jes Extender did give me an extra 1.5 inches, but like I said I had to have a double inguinal hernia so it's been a battle field down south but just like history...the north...being my mind....has won the battle...I believe I have answered all your questions with the exception of one gent who specified I had never mentioned the side effects of taking too much Vitamin E...which is an easy one for me to answer it's HYPERCAUGABILITY...as for the Neprinol....it works...take some Garlic with it which should help to off set some of the side effects...and yes it's very expensive...but there are 2 types of people...those who do and those over analyze; and ponder...

You cats take it easy...and Mr. Hawk...I have a special Rx just for you:

Don't drink mixed drinks...just keep it straight...and on the rocks...should help you to be a better receiver of information...and re-iterator of information.

Oh and to anybody other than Mr. Hawk who believes I am a real doctor, I apologize but I am not...it's just a figure of speech just like picking up the Real Yellow Pages sitting in your kitchen and looking up the P.C. Doctor...and by the way...there is a grand difference between an Ophthalmologist, Mr. Hawk, and an Optometrist...one went to Medical School and the other did not; yet they are both called doctors, case in point....just relax, cat...listen to more Jerry Garcia...it will do you a world of good...

Cheers, gents.

Hi Killer,

I rather enjoyed your respectable (not respectful) reply and i am sure others will too.

Welcome to the forum.  Thanks for the information and rest assured, I am every bit as old as you estimated.  Which makes us even on guessing each others ages  ;)

You must admit that your first post was anything but informative.  While my desire for facts seems to disagree with you, it did produce the intended effect so I guess it performed a valuable service after all.

I am very glad to hear your Peyronies Disease resolved.  If you actually had Peyronies Disease, I think it gives some hope to other young men of which several are on this forum.  It also puts your results in perspective since the reversal rate is much better for younger men, especially if the Peyronies Disease is the result of an accident.  You did not mention the likely onset of your Peyronies Disease and I am sure several here, including me are interested in that.  Having Peyronies Disease at 15 is beyond strange and it it is normal to question if you every actually had Peyronies Disease.

For what its worth, I do salute your work ethic and self-sufficiency.

Regards

PDK,

Quotewhich is an easy one for me to answer it's HYPERCAUGABILITY

Did you mean hypercoagulability (thanks Google)?  Vitamin E should have had the opposite effect (thinning the blood).

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8088011&dopt=Abstract


I now have to flog my dead horse.  You were no older than 16 at onset and it resolved itself.  It was not Peyronies Disease.  This is my opinion and has been.  Your recipe for recovery couldn't hurt.  But, it will not cure Peyronies Disease. 

I'm glad you don't have a curve or a hard spot any more. 

I think the tenor of your post is what ruffled feathers.  Guys here would love to find a cure.  When someone new comes on a forum touting a cure, as if it is so easy,.....well...... I, myself, had to take a breath before I posted.  I got a chuckle from Hawks post because I was thinking many of the same things. 

I believe you were attempting humor.  That is very tricky in writing.  Many times things I have written in jest have been taken seriously.  Just remember how you felt when you first noticed you had a problem and put yourself in the readers position.  That should help you determine the "voice" of your posts.

Although, as I said, I don't believe you had Peyronies Disease.  You did have penile curvature and I think you have a right to be here.  Just read more of what has already been written here.  Your perspective might change on Peyronies Disease.  Mine has.

Liam

Well, "doc", FWIW it was obvious what your general age was too.

Although I too applaud your self sufficiency, and "can do" attitude, it is also a fact that:

1) Peyronies Disease resolves spontaneously, and this may happen more in the young man than older man (where causes may be more often related to cellular aging processes). Therefore, all of the things that you report as having been "fixed" by you, may represent epiphenomena.

2) There are no data to suggest that a metabolic panel (what you call an "ION") contain any data that, when corrected, lead to correction of Peyronies Disease. The only possible exception is the diagnosis of diabetes, which is usually made clinically, not (first) by lab tests.

3) The statement " Show me an article or a source... that specifies that P.D. is an autoimmune disease and not correlated to an autoimmune disease." makes no grammatical sense, so I cannot tell if you are saying it is or is not related to autoimmune disease. In fact, some Peyronies Disease is related to HLA markers for autoimmune disase, and this is an active area of research. I cannot tell if that agrees or disagrees with your statements, since what you think is not as clearly stated as you might imagine.

4) You said "I would say have your woman give you oral sex for a solid 4 months...if she's going to complain about this...I guess a 're-evaluation' should be in order because; gentlemen...what we have...CAN BE RESOLVED...but not if the person we are with are going to be narcissistic, selfish beings...who only care about themselves...none of my business....". It is not much of a stretch, or does it represent a misreading to see that statement as selfish and narcissistic itself. You then want to have it be that Hawk "misread" your intent with those words - to me it seems you don't want to own your words. ::shrug::  The statement comes across as stupid, and when one writes words that seem stupid, one should not be surprised that all their other words are devalued as well.

I am glad that you are better. If you had read here a while, you might have learned how many men here have done the things that you have (although they have not yet reported inducing an inguinal hernia by the overagressive use of a penis stretching device), and yet not found a "cure" as have you. An anecdote is not the same thing as science - we are all interested in reading about men who get better - so I hope that one thing you take away from here is a better sense of where your true power lies on this earth, and where you may not have exerted as much control as you imagine.

Tim

Tim:

Brilliant!!

Mick

Note to all:

My thanks and kudos to Dr. Tim, Hawk, Mick and last of all, but not least Liam for your posts. Having read your posts relieves me of having to put in my two cents worth!

My, how good it would feel to be young again at 19, and full of piss and vinegar!

Regards, to Dr. P.D. Killer

Old Man

Old Man, my very good friend, I generally agree with your statement about being 19 again and full of piss and vinegar. However, if I had to give up maturity and the wisdom that develops from maturity I don't think I would make the trade.

My Best,

Larry

Larry H:

TOUCHE'

I meant only in body! Would not like to give up all my knowledge and experience learned from the "School of Hard Knocks" just to be young again.

Old Man

WOW!

I could guess that our young newbie poster gets the point.

What an interesting well-articulated gang bang that was! As soon as my eyes stop bleeding I think I'll wrap my head in duct tape so my brain doesn't explode.

Regards,

Barry

These last posts gave me so many laughs, they need to be moved to the "On the Light Side" thread.

As the penis hangs outside the body, its temperature is presumably slightly below body temperature. The testicles are similarly situated, and it is known that their lower temperature optimises sperm production. Could it be that penile plaque formation is encouraged by lower temperature also?
This seems an obvious point, yet I have not seen it mentioned elsewhere - except using heat treatment as an alternative cure.
Percival

I have a question. Should I continue taking my Vitamin C supplements with the symptoms I described below (gummy "inside" going down the shaft). Is that even collagen?

Vitamin C is ok unless you are taking a truck load of it.  If you take a little too much you will just pass it as waste.  (I know this is not a highly technical description)

Peyronies Disease is hardness in the penis.  "Gummy" could mean edema (fluid) or fat.  It could mean damage to your blood vessels or lymph system in the penis.  It is almost certainly not Peyronies Disease. 

You may be obsessing a little on this.  I've been there myself.  There is probably nothing wrong that can't be fixed easily.  I promise you will be relieved after a trip to the urologist.  :)

Liam

The part that worries me is the numbness. It increases from time to time and the head feels like it's 25% styrofoam now in texture. The whole thing feels the same as frostbite - kind of "far-away" feeling. It's seriously so numb and different-acting that it feels foreign. I'm going to see an American doctor this time who won't send me away with reassurement like the first one. Anyway I'll be going to the urologist in two days so thank you and sorry to worry ad infinitum on this board.

I was reading on another Peyronies Disease forum that there is evidence that Peyronies Disease could be linked to beta blockers. It so happens that my onset with Peyronies Disease came about the time I began taking blood pressure medicine.  I began taking atenolol (which is a beta blocker). I didn't notice the Peyronies Disease until several months later, but I was experiencing a lack of sex drive.  I switched medicine to another blood pressure medicine which is not a beta blocker. The sex drive is still low, and I figure it's the medicine. It's recommended that you never stop taking blood pressure medicine cold turkey, so I will talk to my doctor to see if I can ween myself off the stuff to see if the sex drive returns.  I doubt if the Peyronies Disease will go away though.  But who knows?  Anyway, does anyone have a similar story?  Just to set the record straight, I never had an injury to my penis, so that was never the cause of the Peyronies Disease.

Pat, my Peyronies also started while on a beta blocker (metoprolol).  I also developed Plantar Fasciitis in BOTH feet while on the beta blocker.  Once I got the doc to stop the beta blocker, the Plantar Fasciitis cleared up completely, but, of course, not the Peyronies, although there are reports of cases where the Peyronies has cleared up as well once the beta blocker is discontinued.  I don't know what you are currently taking for your blood pressure, but I can tell you that if you have the common 'high renin" type  of hypertension, the best medication hands down is Cozaar (losartan) or Hyzaar.  These are expensive since they are not yet available in generic, but they are absolutely top notch with low side effects and high level of effectiveness.  They also are active against TGF-beta-1 which means they can actually be helpful in treating your Peyronies as well as your hypertension.  Next best choice at this point would probably be lisinopril.  Talk to your doctor.

- George

Thanks George.  I am currently on lisinopril.  It seems that we should have been forwarned of the possible Peyronies side effect of beta blockers. What a price to pay for taking doctor's advise.

Seriously? I was on a beta blocker when this all started. My injury had happened months maybe even close to a year (I think 9 earlier), no pain, no symptoms. The peyronies began while I was on a beta blocker which is one of the things my docter tried for migraines.

The problem with beta blockers is their mode of action.  Other hypertension drugs like ACE-Inhibitors, ARBs and RIs lower blood pressure by uniformly dilating the vascular system by acting on Renin, Angiotensin, or Angiotensin Receptors.  Beta blockers work differently by acting on Beta Receptors.  Beta Receptors are used by the body to redirect blood flow AND for other purposes (like collagen production - hello? http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713&tools=bot (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713&tools=bot)).  So while the net effect of a Beta Blocker is reduced blood pressure (through altered heart rate as much as through vascular dilation), they mess with far too many physiological issues for me to be comfortable with them.   ALL these things I learned after my Peyronies problem.  They are things the docs don't tell you overtly and while Peyronies is not listed as being among the recognized side effects, other suspicious things are (like cold extremities - lack of sufficient blood flow .. hello?)  And they are now suspected of causing diabetes..  I believe the only reason for Beta Blockers becoming so popular is that they are cardio protective in many cases.  But I suspect that CoQ10 is nearly as effective for that purpose and is probably much safer.  Certainly I will never take Beta Blockers again.  But doctors still seem to be prescribing them for all kinds of things even though in many cases there are safer alternatives.

Lisinopril is a great drug for hypertension, no doubt about that, and it shouldn't cause significant sex drive issues.  Cozaar is a better drug with fewer side effects and now, an even better drug, Rasilez, is on the way, but not yet approved for mainstream use (you have to be a hypertensive diabetic to get it now).  If you are having sex drive issues with lisinopril, I really doubt that it is the lisinopril.  You might want to check out a couple of really great supplements.  One is Horny Goat Weed and the other is Maca.  I consider both of those to be very safe and also very effective at stimulating ones libido.  But stay away from things like Yohimbe (which is actually an Alpha Blocker), its potential side effects are nastier than those of Beta Blockers and especially if you have hypertension.

- George

Stress has been mentioned a number of times in relation to Peyronies.  In fact it is very well known and generally acknowleged that stress of various kinds (mental, physical, etc.) causes the body to release Cortisol.  But what I just discovered is that elevated Cortisol causes an increase in Arginase among other nasty things http://ajpgi.physiology.org/cgi/content/abstract/272/3/G474 (http://ajpgi.physiology.org/cgi/content/abstract/272/3/G474) ... pretty interesting stuff!

- George

Hi George,
I think there is some kind of link out there with stress and Peyronies Disease? Now that when I look back I was under a tremendous amount of stress. I don't remember injuring my penis and I was not having wild sex but I do remember having a lot of stress during the time when I discovered I had Peyronies Disease. Interesting...

Quote from: Fighter on December 29, 2006, 09:51:24 AM
Hi George,
I think there is some kind of link out there with stress and Peyronies Disease? Now that when I look back I was under a tremendous amount of stress. I don't remember injuring my penis and I was not having wild sex but I do remember having a lot of stress during the time when I discovered I had Peyronies Disease. Interesting...

If I were to map out stress levels for the last decade of my life the peak of my stress came at almost exactly the same time I contracted Peyronies Disease.  At least in my case I'd say there was a correlation.

Perhaps one of the largest benefits I've derived thus far in terms of my Peyronies Disease has to do with attacking inflammation.  Both directly with anti-inflammatory supplements and with anti-oxidants that have an anti-inflammatory effect.  But a big question hanging out there is where does all this inflammatory environment come from in the first place?  Well, there are some leading edge researchers that believe they have the answer to that question.  They believe that answer lies in a little know organ known as the Omentum which is turning out to be a major potential source of toxic chemistry in the body.   And part of that toxic effect is a sub clinical systemic inflammation syndrome.  But the good news is that there are things that can be done to normalize it in terms of diet and exercise.  I am now well along in that process and am hopeful that by getting systemic inflammation out of the picture, I will be able to better get a handle on the localized inflammation that is causing my Peyronies.

PS - The book I am deeply into right now is:

http://www.amazon.com/You-Owners-Manual-Waist-Management/dp/0743292545/sr=8-1/qid=1168638078/ref=pd_bbs_sr_1/102-4473680-5252927?ie=UTF8&s=books (http://www.amazon.com/You-Owners-Manual-Waist-Management/dp/0743292545/sr=8-1/qid=1168638078/ref=pd_bbs_sr_1/102-4473680-5252927?ie=UTF8&s=books)

It is quite an eye opener!

- George

My gut tells me you're on to something George.  I'm reading Fantastic Voyage (highly recommended) and it talks a lot about inflammation in terms of aging and a factor in disease.  I think there's a very good chance that Peyronies and inflammation in the body are highly correlated.  I'm going to dive deeper into this stuff too and will post what I find.

A lot of members discuss inflammation.  Sed rate is a blood test marker for some inflammatory conditions but probably not all such conditions (my knowledge is limited on this topic).  Have any members tested their sed rate or monitored the effect of supplements and diet on sed rate?

I'm planning on going to see a doc soon who believes in using Western medicine as a diagnostic tool in addition to the "Houston we have a problem" approach that most docs employ after a condition has already reached visible proportions.  I'm going to have a bunch of tests run and so I'll hadd this to the list.  I plan to do the tests on a regular basis going forward to monitor how my health improves.

Quote from: Hawk on January 12, 2007, 10:07:24 PM
A lot of members discuss inflammation.  Sed rate is a blood test marker for some inflammatory conditions but probably not all such conditions (my knowledge is limited on this topic).  Have any members tested their sed rate or monitored the effect of supplements and diet on sed rate?

I recently had my sedimentation rate checked, along with a battery of other lab tests for a condition other than Peyronie's.  My sed. rate was normal.  This is intriguing, however, and it would be interesting if others have had theirs checked.

George 999, Thanks for bringing this to our attention. One of the authors of the book you are reading, Mehmet C. Oz MD, was on the Oprah Winfrey show recently discussing the Omentum. Hopefully this will be repeated sometime this year. You can type in OMENTUM in the search engine on her website www.oprah.com  OR  http://www.oprah.com/health/yourbody/slide/numberone/slide_yourbody_numberone_206.jhtml   to see photo of oprah w/Dr. Oz holding up an omentum. Hopefully Dr. Oz will inspire some of us to lose our excess fat & at same time reduce inflammation.

There are currently a handful of serum inflammation markers.  Sed rate, C-Reactive protein, Homocystine, etc.  My personal opinion is that they are not able to present a totally accurate picture of systemic inflammation.  They do a better job of picking up acute inflammation, but chronic extremely low level systemic inflammation is very difficult to detect and its potential effects on general health are very disturbing.  I think a number of researchers and top docs have been onto this process for a long time, but it has taken until recently to pinpoint its source.  And pinpointing its source is leading to a revolution in terms of acceptable waistline measurements, height/weight ratios, daily caloric excess, etc. and even acceptable blood pressure numbers and blood sugar levels.  It has the potential to redefine health care in America and in the world.  It is that big a thing.  It points out why simply 'losing weight' is largely ineffective and why caloric based dieting has proved to be a disaster.  Americans have worse height/weight ratios and larger waistlines than ever before in our nations history, and all of this is happening in the face of more weight loss surgeries and diet plans than Carter has pills.  Something is clearly wrong and there is ever increasing evidence that it is affecting our general health and making us ever more prone to strange maladies like Peyronies.  And I am not asserting that this is a new problem, it is just becoming more widespread as the US and the rest of the world move from subsistence living to relative prosperity.  It is, at its root, a lifestyle problem, and I know that the purpose of this forum is not to discuss lifestyle issues.  But when there is growing suspicion that they are directly related to Peyronies and our purpose is to focus on that link, at that point, I believe the issue takes on validity for this forum.  Certainly there is no one magic pill to cure Peyronies and even lifestyle changes are not likely to do the job on their own.  I am convinced that it will take an orchestra of finely tuned vectors to take down this and other 'incurable' diseases.  And I have a real problem with the term 'incurable' that is often tossed around.  I believe that the more correct expression would be 'We do not yet currently know of a RELIABLE cure'.  The fact that at least a few cases of Peyronies and even Cancer spontaneously 'go away' should indicate that a cure is possible, it is just a matter of discovering and orchestrating as many of those potential vectors as possible simultaneously.  I am discovering more of those potential vectors all of the time and I am not planning to leave any stone unturned in my quest for health.  I am also EXTREMELY optimistic that most of us can get this disease under control and perhaps even eliminate it if we simply follow the relevant research and take appropriate action and have the patience for the time it takes to turn around a very big ship.

Best wishes to all of you for this New Year, may it be a new beginning for us all,

Sincerely,

George

Beta blocker....Many plants have this effect...Have you ben taking anny...For a long time.../?
http://www.ars-grin.gov/cgi-bin/duke/activity.pl

An article I copied:

Quote1: J Urol. 2007 Jan;177(1):179-82; discussion 183.
Brant WO, Bella AJ, Garcia MM, Tantiwongse K, Dean RC, Lue TF.
Department of Urology, University of California-San Francisco, San Francisco, California 94143-0738, USA. panditah@hotmail.com

PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms.

PMID: 17162033 [PubMed - in process]

Source:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17162033

More:

Quote J Sex Med. 2007 Jan;4(1):226-30. Epub 2006 Oct 11.  Links
Nonpalpable Scarring of the Penile Septum As a Cause of Erectile Dysfunction: An Atypical Form of Peyronie's Disease.Bella AJ, Sener A, Foell K, Brock GB.
Department of Urology, University of California, San Francisco, CA, USA.

Introduction. Men with nonpalpable isolated septal scars (ISS) identified with color duplex ultrasonography (CDU) comprise a group of previously unrecognized patients with wide-ranging sexual concerns. Aim. We aim to identify the clinical characteristics of patients presenting with this atypical form of Peyronie's disease characterized by the absence of palpable deformity. Materials and Methods. Of 482 consecutive patients who presented to a tertiary care erectile dysfunction (ED) clinic and underwent CDU after satisfying inclusion criteria, 27 (5.6%) men with nonpalpable ISS and no dorsal or ventral plaque were identified. Main Outcome Measures. International Index of Erectile Function (IIEF), CDU, and clinical characteristics. Results. The median age of the men with nonpalpable ISS was 49 years. The length of time from onset of symptoms to presentation was 22 months, and the pretreatment IIEF score was 14. The remaining 455 men who underwent CDU were of similar age (48 years) but had a markedly lower IIEF score of 9.5 (statistical median). ISS patients presented with decreased penile rigidity (20), penile shortening (13), chronic pain with erection (13; mean 33 months), and the inability to maintain an erection (7). Fourteen men had failed phosphodiesterase-5 inhibitor therapy, and four reported unsatisfactory results. Management options included retrial with oral agents, intracavernous pharmacotherapy, verapamil injections, and surgery. Conclusions. The clinician should be suspicious for nonpalpable ISS in men with sexual concerns who present with decreased penile rigidity, length loss, and chronic pain with erection. Our findings support the use of CDU for this patient group, particularly when previous treatment has failed, because men with ISS had a greater likelihood of having no palpable deformity or curvature and ongoing penile pain. Bella AJ, Sener A, Foell K, and Brock GB. Nonpalpable scarring of the penile septum as a cause of erectile dysfunction: An atypical form of Peyronie's disease. J Sex Med 2007;4:226-230.

PMID: 17034410 [PubMed - in process]

Source:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=search&db=pubmed&term=Sener+A[au]&dispmax=50

Thanks Liam for those fascinating excerpts.  It is just so good to see that someone cares about finding treatments and solutions for this long neglected disease.  The more I have read lately, the more I am convinced that Tom Lue and his team at UCSF Medical Center are leading this charge.  Hopefully, they will not relent until they have come up with a cure.

- George

I would suggest that it is useful, when one explores the causes of Peyronies Disease, to consider the causes of Fibrosis in general.  Unfortunately, for various reasons, the causes of most types of Fibrosis have received comparatively little attention from the research community.  But there is one form of Fibrosis that is currently challenging modern medicine to the point that it is receiving extensive research efforts in terms of both resources and sheer dollar investment.  That would be CKD or Chronic Kidney Disease which unlike Pulmonary Fibrosis (avoid tobacco and asbestos dust, etc.) and Liver Fibrosis (avoid alchohol and drugs, etc.), has no easy answers.  So much effort has gone into finding answers to this stubborn affliction and I believe there is much that we can learn from those answers.  The end result of all of this research is that Renal Fibrosis is caused by:

1)   Inflammation - Yes inflammation is number one on the list of causal issues for Renal Fibrosis.  And that is why inflammation should be a number one target for Peyronies sufferers.  How?
   A) By eliminating inflammatory foods.  Some foods, including red meats and saturated fats are highly inflammatory and should be eliminated from the diet as much as possible.  On the other hand, anti-inflammatory foods should be emphasized.
   B) By avoiding inflammatory supplements.  Some supplements have an inflammatory effect.  Whenever possible, choose supplements that are anti-inflammatory
   C) By avoiding inflammatory drugs if possible. Some drugs use inflammation as a means of therapy.  Whenever possible choose drugs that are anti-inflammatory.
   D) By making it a priority to get ALL localized infections and inflammation under control.  This includes dental issues, chronic low level urinary tract infections, etc.
   E) By maintaining a healthy waist size.  Excess fat within the abdominal wall is now known to cause inflammation.  How does this happen?  It happens because this specific fat releases unique and harmful substances into the blood which alter blood chemistry in a way that is favorable to fibrosis.  It also happens because the this fat causes physical pressure on other organs and  the arteries supplying their blood flow that causes them to also alter blood chemistry in a detrimental way.  If you have Peyronies, you need to do whatever is possible to deal with this issue.
   F) By getting sufficient and regular sleep.  Unhealthy sleep patterns can contribute to low levels of serotonin.  Serotonin levels that are either too high or too low can contribute to inflammation.
   G) By getting sufficient exercise.  Sensible exercise is known to lower inflammation.

2)   Reactive Oxygen-Nitrogen Species - This has to do with oxidation within the body.  It is strongly associated with faulty NO synthesis.  Some refer to it as the 'rusting away of the body'.  In any case, it has been identified specifically as a major contributor to Fibrosis.  This would indicate that oxidative foods should be avoided and foods and supplements with anti-oxidant qualities employed.  This would also indicate that healthy NO activation should be sought after.

3)   Vasoactive Peptides (ANG II, ET-1) and Aldosterone -  If these levels are out of range (typically with hypertension), they should be brought under control with appropriate drugs or lifestyle changes.  My suspicion is that even if these levels are mildly out of their normal range even with no overt hypertension, they could still be a problem for Peyronies sufferers.  Therefore, unless your blood pressure is below 115/75, you should be taking appropriate steps to get it down.

4)   Fibrotic Pathways Activated by ANG II (TGF-beta, PAI-1) - This is the basis for claims regarding products like Neprinol.  But attacking PAI-1 directly has proven problematic, since doing so can result in unintended side effects and may not be practical, but one proven method of attacking PAI-1 has proven safe and effective and that is Nattokinaise.  And as we know, there ways to attack TGF-beta and these should be utilized.

5)   Receptors of Tyrosine Kinase Growth Factors - I don't know of any way to deal with this one, but its on the list, so I throw it in.  On the other side of the coin, Hepatic Growth Factor has been shown to cause a regression of Renal Fibrosis.

6)   Extracellular Matrix Stabilizers (Integrins, Transglutaminases -  Here again, this is on the list, I don't know how one would deal with it except for the fact that there are known Extracellular Matrix destabilizers which should be employed whenever possible.

With this I think I have covered all the known issues in a nutshell regarding Renal Fibrosis.  I find it interesting to note the similarities here with what we already know about dealing with Peyronies.  I would suggest that we could learn much from Renal Fibrosis research that would be helpful in the treatment of Peyronies which is at its core simply Penile Fibrosis.

Hopefully, the above will serve as a springboard for more discussion on some of these issues.  Some of you out there may have insights as to some of the missing pieces of the puzzle, so feel free to build on this concept.

- George

George,

Pulmonary fibrosis does not have any "easy answers."  There are five or six different forms of pulmonary fibrosis, depending upon what categorization scheme one considers.  Asbestosis is but one form.  There is an *association* with tobacco smoke exposure in two forms of pulmonary fibrosis, but  cause and effect has not been demonstrated; in fact, many people with idiopathic pulmonary fibrosis (IPF), the most elusive form (and the most common), have no history of known exposure to tobacco smoke.

What is interesting, in light of your post, is that most experts on IPF accept that inflammation is NOT a causal factor (they have come to this conclusion because prednisone, an extremely potent anti-inflammatory, has no "healing" effect on IPF).  Rather, it seems to be a problem with dysregulation of cytokines, including TGF-b1 and TNF-alpha, leading to proliferation and migration of fibroblasts and myofibroblasts, which in turn leads to production of extracellular matrix, or fibrosis.

If all this sounds familiar in terms of Peyronie's Disease and your post on Renal Fibrosis, it is because, in my opinion, they are all the same root problem.  Further, I am convinced that what will help one of these, will help all the others.  I am keenly interested in what is found to work on this forum because I suffer from both Peyronie's and IPF.  So, I do hope this leads to some good discussion.

Anyone else?

Scott,

Thanks for the first hand insights on Pulmonary Fibrosis.  I had no idea that IPF was the most common form.  I wish you the very best in your battle against both IPF and Peyronies.

As for the inflammation issue.  I would suggest that the fact that Prednisone is unable to stop IPF in its tracks, but rather only seems to slow it down, is not necessarily an indication that inflammation is not a causative factor, or even the main causative factor.  It is only an indication that 1) Once the process starts, it is extremely difficult to reverse due to biological feedback mechanisms that are by nature degenerative, and 2) That it is possible that Prednisone, as good as it is, is not a perfect defense against inflammation.  Thus, in my opinion, it takes more than Prednisone to bring down inflammation AND it takes more than bringing down inflammation to bring fibrotic diseases to heel.  It takes literally attacking EVERY vector of this process simultaneously via multiple techniques to achieve even the slightest bit of headway.  And we are just now in the process of seeing those vectors identified.  I believe that the best model at this point is CKD because CKD seems to have a far higher profile in terms of research funding than any other fibrotic disease, and they at least have achieved a laundry list of sorts in terms of all the various factors (vectors) that go into promoting and inhibiting fibrosis.  I believe that what needs to happen is for every one of those vectors to be attacked simultaneously, and, I am not sure that even that is enough.  But it would certainly be interesting to see what sort of results could be gotten by doing so.

Again, I wish you the very best, and thanks for the great insights.  Surely we can learn a lot by merging the data on things like CKD and IPF and Hepatic Fibrosis as well.  There is just so much commonality here and I am convinced that most of what applies to one, applies to the others.  I also believe that it is really tricky sorting out what is genetic from what is environmental.  And even genetic diseases can require environmental triggers.  It all gets just so complex.  But the more we discuss it, the more we are learning from each other.

Sincerely,

George

Thanks George and Scott for your very cogent posts. I just got my internet connections up a running, so will ponder this as I head off to bed.

Tim

Great exchange guys.  I can add little except a to shine a light on a posible breakdown of communication on one point.  George replied to Scott

Quote from: George999 on January 22, 2007, 07:56:50 PM
I would suggest that the fact that Prednisone is unable to stop IPF in its tracks, but rather only seems to slow it down, ...

Scott had said in part

Quoteprednisone, an extremely potent anti-inflammatory, has no "healing" effect on IPF).

A small difference but maybe one with significant implications in this discussion.

I intended to respond to George on this point, but wanted to do a little more research on inflammation and IPF (on Google Scholar, which I learned about on this forum, and it is an excellent tool!).  I want to stress again the relevance of this discussion to Peyronie's, because it is my opinion that the processes in play in Peyronie's and IPF appear to be the same, or at the very least, quite similar.

The researchers in IPF are heading to the conclusion that prednisone alone not only does nothing for IPF, but may actually do more harm than good.  Prednisone does not "slow down" IPF, although prednisone given concurrently with azathioprine (a cytotoxic agent), *and* N-acetyl cysteine (NAC) at the same time, does appear to slow down the deterioration in some measures of pulmonary function.  Note that this does not represent improvement, but rather the slowing of what seems to be an inevitable decline in function.  It is unknown at this point whether it is the combination of the three agents, or the NAC alone, that causes this slowing in decline.  I am unable to find any conclusive studies on NAC alone, because well-designed clinical trials on dietary supplements are few and far between.

Returning to the issue of inflammation, I should have noted in my post that it is not only the lack of efficacy of prednisone leading to the conclusion that IPF is not an inflammatory process.  Tissue samples taken during open lung biopsies in IPF patients show little or no indication of inflammation going on.  All this has sort of turned IPF research on its ear, and this takes us back to the role of cytokines.

Reading about IPF research and Tim's posts on the role of cytokines in Peyronie's, I have been struck by the fact that the descriptions of the factors involved are almost exactly the same.  That is, TGF-b1 and TNF-alpha are a kind of on/off switch in the process of fibrosis.  A host of other factors are involved, but these appear to be at the beginning of the cascade leading to abnormal wound repair, or fibrosis.  Both cytokines are essential for normal wound repair, including microvascular injury, but the "switch" is in the always-on mode.  It is intriguing to consider, then, that if the cytokines could be reduced (inhibited) to normal levels, it might then stop the cascade leading to fibrosis dead in its tracks.  This is the hoped-for outcome with pentoxifylline, which inhibits TGF-b1 and TNF-alpha.  Tim also recently mentioned pirfenidone, a drug currently in IPF clinical trials around the country.  The best I can tell, pirfenidone would be a much more powerful inhibitor of TGF-b1 and TNF-alpha than pentoxifylline is, but the reality is that it is some time away from approval for IPF, and wouldn't be approved for Peyronie's anyway.  For personal reasons, I declined to participate in the clinical trials for pirfenidone.  So at this time, pentoxifylline is my best bet.  I'm taking pentox, hoping that it will stop the progression both of my IPF and my Peyronie's.  Note that I said, "stop the progression", because nothing I have read leads me to believe that either pentox or pirfenidone will reverse damage already done.  I'm also throwing NAC into the mix as a "can't hurt" intervention.

I'm still not sure about inflammation, and am interested in knowing more about any role it might have in Peyronie's and/or IPF.  I'm sure Tim will be checking in here pretty soon.  I hope to God he's not going to eat me alive for a simplistic rendering of IPF!!

Because I see kids with lung problems, I don't have much experience with IPF. I have seen several progressive cases of pulmonary fibrosis after lung irradiation, a process with some similarities to IPF (and Peyronies Disease).

I agree with George that only a multi-pronged attack will help (may be the only) find a way to fixing Peyronies or IPF. All of the proposed avenues towards inflammation that could be addressed are also, in turn, affected by "upstream" mediators. A recent article in Peyronies research showed that the TGF may be induced by platelet activating factor (PAF1) - so going further up the stream to find the source is where we might be able to best affect the course of this process.

I am too tuckered out to go into why Steroids might not help, but physiologically, it may be more of a matter of closing the barn door after the cows get out (horses??). So steroids may not be specific enough to stop the pathologic processes, and their general helpfulness is also their curse - they act generally and also cut off function of a lot of good stuff (like your immune function) so use of steroids comes at a great cost. There is no good data that steroids (oral or injected) help in Peyronies, either.

Tim

First of all, I have some real issues as to how the medical community defines 'inflammation'.  It was not that long ago that inflammation was only detectable in acute cases.  Now we have some pretty straightforward tests that can detect much more subtle forms of inflammation.  But I am not sure that we have reached the root of the problem just yet.  I, rather, believe that extremely low level inflammation can be localized, contained, and encapsulated by tissue in such a way that it is virtually undetectable by current technology (I am not even convinced that extremely low level systemic inflammation can be detected by current technology).  I also believe that ischemia and inflammation go hand in hand.  I would suggest that in the case of fibrosis, you end up with a localized area of contained inflammation and toxic pathology that is, by its very nature, putting out toxins that are poisoning adjacent tissue.  This is the process that therefore must be addressed.  And this abnormal tissue is going to be so atrophied and ischemic that you are simply not going to get any anti-inflammatory (or immune suppressive) substance into it via bloodflow in any amount that can be effective.  And you have to remember that as this fibrosis is expanding, it is causing that same ischemia in surrounding tissue.  Part of the effect of Pentoxifylline is its ability to make red cells more flexible, thus oxygenating areas that would otherwise be ischemic.  As for Prednisone, although I really did not want to get into this area because some people really need to be taking it, I have to agree with Tim, that like most other drugs (and supplements), Prednisone is far more than simply an anti-inflammatory.  It carries a pretty broad and extremely potent payload that may or may not be helpful in the case of fibrosis.  Actually, I am very familiar with Prednisone as I have taken it before myself for ITP, another one of those idiopathic (how I hate that word) things that has an autoimmune component.  The two substances that are the most interesting to me in terms of fibrosis at this point are in fact Pentoxifylline and broad spectrum Vitamin E.  But I remain convinced that it is extremely important to knock out systemic inflammation in ANY case of fibrosis, but I don't necessarily believe that Prednisone is the best tool to accomplish that, despite its massive potency.  I believe that ANY degree of systemic inflammation, even at a subclinical level, will only feed the cytokine furnace that is slowly, but progressively, burning through our remaining healthy tissues.  But I would be the first to agree that that is only one step.  Every other facet on the list should be addressed with concerted and unyielding effort and if one looks at the research, there are drugs out there that address most if not all of those specific processes effectively.  This is why I posted the list because it points out a concise inventory of potential targets that can be exploited to drive stakes into the heart of these syndromes, and I believe very strongly that that is going to take as many stakes as we can muster.  And I once again point out that reversing any form of fibrosis is akin to making water flow up hill, but I am also extremely convinced that it can be done IF the information we already have is sufficiently exploited.

- George

When I was in 6th grade (I am in 12th now, 18-years old), I had a disease called Pancreatitis, which is an inflammation of the pancreas.  My gastrointerologist had no idea what could've caused this b/c I had no external forces or blows to the abdomen that could damage my pancreas.  He considered some sort of pancreas-attacking virus, but who knows...  maybe a genetic screw up?  lol  :P i shall never know.  Anyways, my gastrointerologist also said that it was very possible my Pancreatitis could lead to some form of Diabetes (I don't remember if it was type 1 or 2)...  I was wondering if my 6 month bout with Pancreatitis could be tied with Peyronie's Disease.  Alright, thanks for the time.
                                                                       -Kume988

Although I barely remember being 12 years old, I do recall that I masturbated back then.  8)

Do you recall whether or not, if you masturbated then (or even just got erections and looked at them) if you had the bend before then? That should answer your question. If you always recall bending downwards, then it is probably congenital.

Tim

I am routinely emailed an updated literature search for Peyronie's Disease (Peyronies Disease). This floated in last week. It suggests that although we have or see a lesion in one place, that those with Peyronies Disease have a generalized inflammatory change happening in the Tunica Albuginea (TA).

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

AU Nale D.  Mii S.  Vukovi I.  Radosavljevi R.
FA Nale, Dorde.  Mii, Sava.  Vukovi, Ivan.  Radosavljevi, Radoslav. IN Institut za urologiju i nefrologiju, Klinicki centar Srbije,
  Beograd.
TI [Induratio penis plastica--localized or diffusive fibromatosis of tunica albuginea penis?]. [Serbian]
SO Vojnosanitetski Pregled.  63(11):939-44, 2006 Nov.

BACKGROUND/AIM: The part of the tunica albuginea that is not affected by localized pathological fibrosis is excised by the Nesbit contralateral excisional corporalplasty in patients with induratio penis plastica (IPP). The aim of this study was to find out if there were any histological changes of the macroscopically normal tunica albuginea excised during the Nesbit corporalplasty.
METHODS: A total of 31 patients, mean age 45 +/- 7.65 years, were surgical treated for extensive penile curvature (impossible or difficult penile imission in the vagina), using the Nesbit surgical technique. The
tunica albuginea tissue was manipulated by Allis's clamps and excised in the shape of a diamond and placed in the 4% formaldehyde solution for histological analysis. The excised tunica albuginea was not wider than 1 cm, while the histological preparations were 3 to 5 microm thick, and they were stained with hematoxylin-eosin. The excised tunica albuginea tissue appeared macroscopically (anatomically) normal in all of the operated patients. In 28 (90.3%) patients opperated for dorsal curvature of the penis, the tissue of the tunica albuginea was excised from the urethral ridge, while in 3 (9.7%) patients operated for lateral curvature, the tissue was excised from the lateral corpus cavernosum.
RESULTS: The histological results were normal in 12 (38.7%) patients, while in 19  (61.3%) cases the findings indicated fibrosis of tunica albuginea. No significant difference in the patients age was found between these two groups (p = 0.09). The analysis of a total number of histological results of the patients with tunica albuginea fibrosis in relation to the patients with normal results showed that there was no significant difference (chi2 = 1,2; df = 1; p > 0.05), suggesting that the macroscopically normal tunica albuginea is not always expected to yield normal histological result.
CONCLUSION: Significantly more reported histological results of tunica albuginea fibrosis in the location that appeared normal macroscopically (chi2 = 27.5; df = 1; p < 0.01) indicated that, in the majority of IPP patients (61.3%), pathological lesion was diffusive with localized phenotypic expression plaque in the tunica albuginea, showing that, in the majority of cases noxa acted diffusely.

***********************************************
Tim

Tim, that would seem to provide all the more reason to go after systemic inflammation aggressively!  It would seem likely that the plaques themselves exude inflammatory agents that incite inflammation in the surrounding tissues.  If this can be controlled or even suppressed it will likely greatly diminish or even halt the progression of Peyronies, independent of any therapy directed at the plaque itself (Pentox, etc.).  These are my observations (and this strategy has worked well for me and has seemed to keep my disease state fairly well contained).

- George

I would like to see a doctor that would work with me in trying to get to the bottom of this, looking into a collegen disorder or insulin resistance, or ... I don't think a urologist would be interested, a rheumatologist perhaps? indocrinologist perhaps? I am a difficult patient for most doctors because I am so participative in my treatment.

George I agree with you completely. Like many here, i look to your experience with great hopefulness, because it leads me to hope that the same outcome could come my way. I similarly look to Old Man for his wisdom in use of the VED. Interesting that personal testimonials count for so much more than data!

But I think this is the right thing to do - and it is the right thing to do whether it works or not! Because it is good for so many other aspects of life in general, and one's overall health.

I think that the rheumatologic, genetic or immunologic components will be shown someday to play huge roles in this - not simple "injury". For now, we are left t our own devices to figure out what works for us. I have found that a micronutrient approach that reduces inflammation and the VED (I use a modified protocol and focus on the narrower chambers for now) is most helpful at keeping things at bay. The good news is that my basic curve is better now. I do not think I have ever measured it accurately, but would estimate it has gone from an about 30 degree to a 10-15 degree curve over the past six months. The bad news is that the waisting is still going on and is not better. For that I am starting to focus on a slightly larger cylinder and am about to start the pentox, cialis (works better for me) and arginine (using vasoflow) cocktail.

Tim

PS to DocSavage. If you like to participate and you cannot find a doctor who likes to work with you, then keep on looking. If you have seen over 5 to 10 doctors and found the same result, then it might be you, not them. Maybe what you see as participation they see as something different.

Tim, I do think that the improvement in your curve is a very good sign that things are going in the right direction.  And you have to remember that the "waisting" is being caused by the very same process that is responsible for the curve.  I'm assuming that by "waisting" you mean as in hour glass.  In that case, I think that in a physiological sense, it is very likely that you would notice improvement in the curve long before you would be able to detect the same improvement in the waisting.  One of the problems I have observed in dealing with this disease is an issue which I have mentioned before.  We all would like to see quick results, so we tend to move from one remedy to another.  Unfortunately, it is going to take years of dedicated effort for most of us to make progress with Peyronies and that means going with things that are supported by external evidence and sticking with the plan.  As time passes we will see not only progress, but also times of regression.  It is just the nature of the thing.  I still maintain that the important part is keeping a handle on inflammation so that the stuff doesn't spread and at the same time try to whittle away at the entrenched plaques.  This strategy is definitely working for me and I highly recommend  it, but I want to make it clear that I do not intend that to convey that I am promising any miracle cures.  This stuff is tenacious and you have to be just as tenacious and aggressive in attacking it.  I think you are doing all the right things and headed in the right direction.  The main enemy you have to watch out for is discouragement and depression.  It has been helpful to me to concentrate on my general state of health and the You On A Diet book has helped me lose 25lbs effortlessly which has had a huge effect on my overall health.  My blood pressure is staying down continually at this point, even when I am under stress, and I am in the process of tapering back my medication which is going well so far.  I find that really exciting and am planning to try to drop off another 20lbs as soon as we can get the 'evil' foods cleaned out of the fridge and I suspect that will lower my levels of systemic inflammation and thus have a significant, though not major, positive impact on my Peyronies situation.

- George

Not sure exactly where to put this post, but guess this is as good as any...

Came across this link and found it to be one of the most comprehensive looks at causes of Peyronies Disease I have seen...and notice, the date is 2002! I can only hope that there is research taking place out there investigating every one of these possible etiologies. Maybe there are researchers out there involved with Peyronies Disease research who may come across this and take a new approach that might result in a new therapy or new drug. One can only hope...

http://www.nature.com/ijir/journal/v14/n5/full/3900873a.html

Roadblock,

I would have to agree with you.  That link is definitely a cut above.  Great find Roadblock!

Roadblock, that is a great link!  The Cavidad team has done a lot of good research on Peyronies.  I don't know whether they are still continuing it, but I do know that it is related to a lot of stuff that Dr. Lue is applying in his Pentoxifyline treatment approach, which I believe is the best treatment going and is one of the only treatments that is showing signs of success.  There is now something out there that has been mentioned on this forum that is similar to Pentoxifyline in attacking TGF-beta, but significantly more effective.  It is so good that it is being tested against several different fibrotic diseases and once approved for treatment for any one of those, will be available for off-label use against Peyronies by doctors like Lue.

- George

What is it?

It's Pirfenidone, and it might not be THAT much better than pentox, but it seems to have promise.

Tim

Quote from: Hawk on April 17, 2007, 08:50:07 PM
One must even ask if there is enough data to know whether it is the actual catheterising that is the causative factor, or the associated surgical procedure and the resulting inflammatory response that occurs.

The longer I have Peyronies Disease, the more I "sense" a correlation to inflammation.  Inflammation may not be the "engine" of Peyronies Disease.  But, it seems, it may be the "throttle". 

Thought i'd throw this info in here....I do remember being catherterised not to long before i came down with peyronies disease,,,,,but just not sure if that's what brought it on,,,,I know i had bent it bad a couple of times when younger during intercourse with my wife and remember it hurting.....And then when i had taken my first dose of viagra, 100mg,,,,about 8yrs ago i knew something was happening right away and with in a few weeks i was bent real bad...Through all these years i have continued to use viagra and believe it has helped to bring it back somewhat straight along with the use of TV and vita-E.......Hope this might add to the info....

kimo

I have to agree with you Liam on inflammation being the throttle.... I think George made some good points with the dash diet and inflammation and life style changes, seems diet can be corrected faster than say a ex smoker..... up to five years to change your blood back to where it was........http://www.eurekalert.org/pub_releases/2005-06/plos-sai062205.php

Good link Rico! 

I was unaware of some of that information about smoking.  It almost makes me wish I smoked so I could quit ;)

:)



Isolated Septal Fibrosis Or Hematoma - Atypical Peyronie's Disease?
01 Feb 2007

UroToday.com- Classically, Peyronie's disease (Peyronies Disease) presents with penile curvature and/or pain, and is associated with a palpable penile plaque. Often these cardinal symptoms are accompanied by a constellation of other issues, including penile shortening and/or narrowing, loss of erectile rigidity throughout the penis or distal to the plaque, and decreased penile sensation.

A recent report from Tom Lue's group in San Francisco describes a subset of patients with suspected Peyronies Disease who were found to have only a circumscribed septal lesion (CSL) on penile ultrasonography. In the review, published in the January 2007 issue of the Journal of Urology, the characteristics of this subset of patients are reviewed.

Of a series of 650 patients with Peyronie's disease, 47 patients were identified with isolated septal fibrosis on ultrasound. Patients with any additional lesions, such as peripheral plaques, were excluded from the group. Of the group of 47 patients, 33 presented with classic findings of Peyronie's disease including penile pain or curvature. Four men presented with erectile dysfunction. Seven men presented with a primary complaint of penile shortening or distal softening, of whom 3 reported a lump in the mid shaft of the penis. A total of 17 patients had a significant history of penile trauma, but not a penile fracture. The event occurred within 6 months of presentation in all men. In three men presenting soon after their traumatic injuries, a well-defined cystic area in the septal region was found on ultrasound. These areas were found to be liquefied hematomas and were aspirated under ultrasound guidance. In one case, the hematoma was adjacent to a smaller, more typical appearing CSL, and in one patient, a follow-up ultrasound demonstrated evolution to a smaller but otherwise typical CSL. All of these men, who had complained of ED after their traumatic injuries, had complete resolution of their erectile dysfunction within 4 weeks of aspiration.

The authors believe that these septal lesions may actually represent septal fractures and that early intervention with ultrasonographic aspiration may prevent formation of a typical Peyronie's plaque, albeit in the septum, and prevent the complication of fibrosis, penile curvature and other stigmata of Peyronie's disease. The authors also discuss their use of the anti-inflammatory Pentoxifyline in divided doses of 800 to 1,600 mg daily to fight the inflammatory component of Peyronie's disease.

Brant WO, Bella AJ, Garcia MM, Tantiwongse K, Dean RC, Lue TF
J Urol. 2007 Jan; 177(1): 179-183

Reviewed by UroToday.com Contributing Editor Michael J. Metro, MD

UroToday - the only urology website with original content written by global urology key opinion leaders actively engaged in clinical practice.

To access the latest urology news releases from UroToday, go to:
www.urotoday.com

Copyright © 2006 - UroToday

http://www.pharma-lexicon.com/medicalnews.php?newsid=62103

This is indeed truly fascinating!

- George

The study referenced by Liam makes and interesting point, specifically that the general purpose of Pentox is to control inflammation.  This, once again, brings uncontrolled inflammation to center stage in the list of causes of Peyronies.  One paper that I have found interesting in this regard is this one:

http://obssr.od.nih.gov/Content/Conferences_And_Workshops/Conference_FY2003/allostatic_load.htm (http://obssr.od.nih.gov/Content/Conferences_And_Workshops/Conference_FY2003/allostatic_load.htm)

Note particularly:

QuoteThe stress experienced by socially subordinate female macaques that are fed an atherogenic diet to induce development of the metabolic syndrome has produced a remarkable model of modern life[29],[30]. Similar to chronically stressed humans, these animals over-secrete cortisol, are insensitive to cortisol negative feedback, accumulate visceral fat, and have poorer ovarian function, more coronary artery atherosclerosis and depression as compared to dominant females. Preliminary data suggest that animals with the greatest allostatic load may have relatively short survival times.

In other words, the body's response to stress is to secrete Cortisol.  Cortisol is the body's natural 'cure' for inflammation.  But when Cortisol is chronically secreted due to chronic stress load, it is no longer effective in suppressing inflammation and inflammatory diseases run rampant.  This is referred to as "Adrenal exhaustion".  One has to wonder if this type of syndrome plays a significant role in the development and progression of Peyronies.

Also note this article on the subject:

http://www.usatoday.com/news/health/2005-03-08-heart-happy_x.htm (http://www.usatoday.com/news/health/2005-03-08-heart-happy_x.htm)

QuoteUpset adults might produce more of the stress hormone cortisol. In the short term, cortisol lowers inflammation, but there's some evidence that chronically high levels make receptors for it less sensitive over time. Then they no longer take in the cortisol, so inflammation can run rampant.

This is the kind of research that is really pointing the way to a global solution to fibrosis.  We are attacking the superficial issues while ignoring the root causes and the resulting therapeutic approaches are less effective as a result.

- George

I don't know how many of you made the connection on this one:

http://www.reuters.com/article/healthNews/idUSN1643513920070416 (http://www.reuters.com/article/healthNews/idUSN1643513920070416)

QuoteThose who ate cured meat products at least 14 times a month were 78 percent more likely to develop chronic obstructive pulmonary disease than people who did not eat these meats, even after the researchers sought to account for many other risk factors including smoking, overall diet and age.

Chronic obstructive pulmonary disease, also called COPD, refers to emphysema and chronic bronchitis, which interfere with normal breathing.

We are talking about pulmonary fibrosis here and the keyword is fibrosis.  If the nitrites in cured meats are able to stimulate pulmonary fibrosis, one can only wonder if the might not have something to do with penile as well as other forms of fibrosis.

- George

I have found a high correlation between people who eat cured meat and people who attend Monster truck shows.  Now, there is also a higher concentration of Axe Body Spray in the air at said shows mixed with truck emissions and body odor.  All of these are introduced to the body through inhalation.  Therefore, possibly, Monster Truck Shows lead to COPD and P D.

Something to ponder  ;)

Liam

QuoteJiang could not rule out, for example, that people who eat a lot of cured meats -- hot dogs, cold cuts, sausage, bacon, cured hams and the like -- may be more likely to have an unhealthful diet and lifestyle that might account for the higher lung disease risk.

http://www.reuters.com/article/healthNews/idUSN1643513920070416?pageNumber=2

Just having some fun, George.  But, seriously, it is hard to discount lifestyle.  Also, this may be pointing to the link between hypercholesterolemia and other diseases as well.

George,
BTW, I have learned a ton from your posts.  I appreciate your knowlege and your willingness to share.

The anti arrhythmic is called flecainide, which I take for atrial fibrillation. I've also taken propafenone and verapamil. None of them are beta blockers (I have heard about the connection between beta blockers and Peyronies Disease). I also take warfarin for stroke prevention. The anti arrhythmics didn't help my sex life, so I started taking a small dose of Viagra. About a year later, I noticed some curvature and a sort of indentation. Since then it has got much worse, over the course of about 3 years. So I've always had a sneaking suspicion that the Peyronies Disease was caused by either the anti arrhythmics (which definitely slow down blood flow to the "area"), or the Viagra (which maybe stretches things beyond where they are supposed to be stretched).

Regarding the "congenital" Peyronies Disease, I think what he means is that I have a fibrous lump on my foot, some bumps on my hands (ie Dupreytens and Lederhosen), and that I am prone to scarring in these areas, and that there is a connection to what is happening with my penis. I didn't have a real trauma, very little bending or curving, but am developing a "waisting" pattern. He is a real Uro, not a GP, and is the only guy locally who deals with Peyronies Disease by treating it with verapamil injections. He also does surgery, but I'm hoping to avoid that solution.

Quote from: Doug on May 08, 2007, 09:07:20 PM
So I've always had a sneaking suspicion that the Peyronies Disease was caused by either the anti arrhythmics (which definitely slow down blood flow to the "area"), or the Viagra (which maybe stretches things beyond where they are supposed to be stretched).

....I have a fibrous lump on my foot, some bumps on my hands (ie Dupreytens and Lederhosen), and that I am prone to scarring in these areas, and that there is a connection to what is happening with my penis.

Doug,

It is hard to pin your Peyronies Disease on one of these drugs when they did not cause your other fibrotic diseases.  It seems you definitely have a hereditary predisposition for these disease to develop as you age.  That seems to be the biggest single factor.  A hereditary connection however has nothing to do with the term congenital.  Congenital has one clear meaning, something that was present at birth.  It does not mean a tendency was there at birth.  There simply is no such thing as congenital Peyronies Disease.  No competent doctor would use that term.  There would be no excuse for an MD to misuse such a specific term that is so common to the profession. There is congenital curvature which is not fibrotic, not progressive, and not Peyronies Disease.

Doug,

>>>>>Hawk and I are on the same page on this one<<<<<<

I understand the connections and what you mean.

The question of the "disease" being present at birth (congenital) is troubling.  Having genetic markers means congenital?  Are there genetic markers?

The term congenital (con genital) is troubling.  Two burritos con genital, por favor.  :o  Maybe I'm just troubled.

Good Luck!  Hope you avoid the knife, too.

Liam

BTW, I've have/had adhesive capsulitis in both shoulders, Dupuytren's in both hands, Peyronies Disease (of course) and just found (ouch!) a lump on the bottom of my foot on the "margin" between the ball of the foot and the arch in line with the fourth little piggy.

Liam and Hawk:

I have no reason to take issue with you guys about congenital conditions, but have one for you to think about.

My mother and father both, had Duputren's and Lederhose conditions. My father has Peyronies Disease as far as I remember. Not bad, but did have a curve to the right about 30 degrees. They used to joke about it when they thought I was not listening.

So, just stating the above to relate that since I have Dupuytren's, Lederhose and Peyronies Disease that there might be a hereditary situation in my case. Who knows since so little is known about all three of these maladies.

Old Man

No.  I agree there is at least a genetic predisposition.  My only problem is a predisposition doesn't mean the disease itself is congenital.  You may have the predisposition without the disease manifesting itself.

I think all of us agree on that.  :)

Oldman,

Your point is valid but the term is incorrect.

Congenital means that the CONDITION actually existed at birth.  Congenital Peyronies Disease would mean that at the first diaper change the infant actually had Peyronies Disease.  Many of us (maybe most of us) may have been born with a genetic marker or predisposition to Peyronies Disease.  Many people are born with a genetic marker or predisposition for Peyronies Disease, baldness, breast cancer, prostate cancer.  Those are not congenital diseases however.

Hawk:

Point taken, but does not a male penis start forming at some stage pregnancy prior to actual birth? If the baby is born with a congenital penis, it would have occurred prior to actual birth. We know that congenital curves usually cannot be corrected short of surgery, right? So then, if a persons forebears have Peyronies Disease, Duputrens and Lederhose conditions, would it not be possible for their offspring to have the genetic background to produce these in the offspring?

The above are just questions that have entered my mind while reading all the prior discussions.

Give me more information relative what the answers could be. Thanks.

Old Man

Hawk, Old Man,  I think Hawks point here is that the term 'genetic' is NOT interchangeable with 'congenital'.  'Congenital' refers to a PHYSICAL defect present at birth while 'genetic' refers to a GENE defect present at birth.  Thus a 'congenital' defect may OR may not be related to a 'genetic' issue, while a 'genetic' issue may OR may not cause a 'congenital' defect.  For example many people have 'birthmarks'.  These are by definition 'congenital', but there is no evidence that they are related to 'genetics'.  On the other hand, many people develop certain diseases later in life that ARE the result of a 'genetic' issue, but since they were not present at birth, they are not considered 'congenital' although I suppose you could refer to the underlying 'genetic' problem itself as being congenital.  In the case of the conditions that Old Man is referring to, I would suspect that there is an underlying genetic PREDISPOSITION to developing a 'toxic' metabolic state that in turn predisposes one to developing these diseases that are commonly seen occurring together.  But I suspect there is just a whole lot of stuff happening in between the genetics and the manifestations and that there are probably numerous points at which this process could be short circuited IF we just knew more about the pathways involved.  At this point, I think that we are only barely scratching the surface in that regard.  We know about TGF-beta-1 and the like, but none of those factors really explains what precipitates this endless loop in the first place.  That, like the root causes of metabolic syndrome, involves a deeper set of factors, that eventually results in a metabolic environment that just spins off all of these afflictions.  And that is what makes treatment so difficult.  It is not enough to just treat the afflictions themselves, nor is it enough to just treat the root cause.  You really have to treat everything in perfect sync in order to make progress against the end disease.  This is because you have an underlying condition that is causing continuous damage.  No matter how successful you are at repairing that damage, that underlying condition just keeps pouring on fuel faster than you can dowse the flames with water.  On the other hand, even if you are successful in controlling the underlying condition, the damage it has caused will not only persist, but will continue to worsen, as it has, in effect, taken on a life of its own.  ONLY by precisely addressing both issues can progress be made, and at this point, I think it is safe to say that we just don't know enough yet to reliably make that happen.  I think that in some cases this just happens by chance or serendipity and the result is what we refer to as a spontaneous remission.  But I suspect that if we were able to look closely and analytically, we would see that most cases of spontaneous remission are a result, as it were, of an 'alignment of the stars' in the sense that by sheer good fortune or the grace of God, the underlying condition AND the resulting affliction are able to resolve in sync.

Good clarification George.

If the doctor referred to congenital Peyronies Disease when he meant hereditary, that means that he not only used the wrong term, but that he is showing his lack of knowledge by even suggesting he knows the root cause of a specific case of Peyronies Disease.

First, the patient would have to know the Peyronies Disease and fibrotic history of his family, and he would have to cover this in detail with the doctor.  Even then, the doctor would be speculating that this case of Peyronies Disease was hereditary (not congenital)

Another example of the forum at its best!!!

While we're at it, I would also like to point out that it is not always so easy to distinguish genetic factors from environmental factors.  For example, a father and son both contract the same affliction.  Seems genetic, right?  Be careful.  Suppose I were to tell you that the father was a smoker and along the way the son became a smoker also.  Or, that both lived in the same community and drank water from the same wells.  Or, even that this family had a penchant for eating lots of processed meat and the son continued that 'cultural' tradition.  So there are just a lot of things that need to be eliminated as possibilities before something can be safely declared to be 'genetic' in the first place.  And those things are really not that easy to identify.  Researchers, for example, have just discovered that oral sex with multiple partners GREATLY increases the risk of throat cancer (and how many people have been assuming that oral sex is 'safe sex'?).  Who would have guessed?  There are just so many of these kinds of wild cards out there that keep popping up.  So, while I am not saying that genetic factors are not involved in these things, I am just really a skeptic when someone is able to come to that conclusion so easily.

- George

Good point to ponder, George!  I will try to keep an open mind.  It does seem to "quack like a duck" but ...

You never know.

There is no "safe sex" in my opinion.  Look at all the guys who claim to have gotten Peyronies Disease after "rough" masturbation.  You'd think that would be the safest sex possible.  ???

Liam

QuoteAntidepressants can definitely cause rubbery erections in some people and that can put you at risk to injury.   

216.24.161.210 (?)

A noticeable injury may certainly initiate the Peyronie's cascade (never leaves water spots).  However, in absence of a trauma, it will start with no apparent injury.  Micro trauma has been cited.  Micro trauma = normal wear and tear. 

Its like saying, "If you don't use your voice, you won't lose your voice."  And, we all want to be "rock stars".

Quote from: George999 on January 03, 2007, 02:31:46 PM

Nonsense.  Masturbation does not cause Peyronies. 

George... or anyone else who thinks this is the case. How can you be so sure? Has this actually been proved to be the case?

The reason I ask is because I'm convinced that masturbation caused my Peyronies... or at the very least played a major role in it developing.
I'm now 53, and developed Peyronies 2 years ago after I'd masturbated twice in one day. Nothing unusual in that, you might say. I'm sure most men have done it, and I certainly have many times since my teens. But on this particular occasion my penis was quite sore after the first session, and, like a fool, I ignored the warning and carried on a second time a few hours later, after which it became very sore. It remained sore for several days, and then, when some small lumps began to develop, I went to see my doctor, who diagnosed Peyronies.

I find it very hard to believe that I would have developed Peyronies if I had not masturbated that day. I may well have been susceptible due to genetics and age, but I believe masturbation was the trigger. After all, masturbation could hardly be classified as a "natural" activity, in so much as the penis is not designed to be rubbed continuously in this way. It's really only meant to be used for sex, where the pressure on it is much more evenly distributed ( and for peeing through, of course ).
I guess it depends to some extent how you masturbate, but in my case the thumb rubs up and down the top of the shaft, which is where my plaque now is.  Surely, once you get to my age and the repair mechanisms are not so efficient, that action is likely to eventually cause some damage, especially if you overdo it. If I'd known about the possibility of Peyronies at the time I'd have been much more careful, but, like most people, I'd never heard of it.

Anyway, I'd be most interested to hear your opinions on this.

Nope. Masturbation does not cause peyronies. If that was the case pretty much every adult male would have peyronies. Statistics alone make this an impossible assertion.

What we KNOW causes peyronies (in some cases) is injury to the penis. This means that masturbation that causes such injury can cause peyronies. But its not masturbation, its the injury. There are other factors because not all injury causes peyronies, but hopefully medical science will uncover that in my lifetime.

An issue that needs mentioning is the 'western protestant christian bias' against sex and masturbation. One of the most harmful things about 'unthinking' mainstream christianity is the bias that sex and by extension self pleasure is bad. (Those of you with a christian viewpoint, apologies. I inserted the 'unthinking' point with consideration. We have some medieval viewpoints still and most thinking christians have discarded them) So anyway, I am making the point that we should not confuse the guilt about masturbation with the reality of peyronies. I am not saying that you are doing so, since I don't know you I have no idea. It is a general comment that needs making occassionally.

First I must respond to PJ because his point kind of amused me

QuoteAn issue that needs mentioning is the 'western protestant christian bias' against sex and masturbation. One of the most harmful things about 'unthinking' mainstream christianity is the bias that sex and by extension self pleasure is bad.

I scratched my head for a bit trying to figure out why that issue "needed mentioning" in a discussion of whether or not masturbation can physically injure a penis or not.  The answer to the question is either "YES" or "NO" with supporting facts.  I find issues of whether it is a sin, believed to be bad, socially acceptable in public, endorsed by Middle-Eastern Sunni Islam, or other such issues irrelevant to the question at hand. (No pun intended)  ;)

To Shrout:  I say masturbation can cause Peyronies Disease but only under very limited and rare situations.  Masturbation is defined as sexual self-stimulation.  That is a pretty broad definition that is almost as broad as the term sex.  If a masochist masturbates with a rubber mallet I think it would be very likely to cause Peyronies Disease (regardless of societal acceptance or rejection of the practice and regardless of its sinfulness  ;)  )  I have read on this forum of men masturbating in some pretty novel and risky ways that could cause injury. 
On a more practical note however, I cannot imagine typical masturbation 10 times a day causing Peyronies Disease.  My guess is that most young boys have actually reached or exceeded that number at some point after first experiencing puberty and full blown orgasm.

This is what I conclude:  Typical masturbation can never cause injury or resulting Peyronies Disease.  If it triggers Peyronies Disease, then foreplay and sex would have triggered it.  If this were true then one session of masturbation every other day would have also triggered it so it is a moot point.  What often happens is that a man masturbates and feels some soreness.  The soreness is noticed because of the fact that Peyronies Disease is present and the first noticeable symptom is pain that is discovered during masturbation, not that masturbation is the cause.  To follow this logic, most men here would conclude that intercourse or nocturnal erections cause Peyronies Disease because that is when most of us first felt discomfort followed by Peyronies Disease progression. 

Typical masturbation is no more damaging to the penis than the many other things that happen to every penis on a very regular basis.

In the past, our American Judeo-Christian culture frowned upon masturbation.  It was thought of as a sin against God and nature.  Even those with no particular religious beliefs would wince at the subject.  Remember the tales of going blind or growing hair on your palms.

I believe this explains, at least in part, the ease in blaming masturbation for Peyronies Disease even though there is no evidence to support it.

A Quote By Me:

Quotenoticeable injury may certainly initiate the Peyronie's cascade (never leaves water spots).  However, in absence of a trauma, it will start with no apparent injury.  Micro trauma has been cited.  Micro trauma = normal wear and tear.

On the other hand, I think guys today are too ready to discuss their self stimulation habits.

I believe all evidence available today leads us away from the idea of trauma causing Peyronies Disease.  Trauma may cause injury and scarring.  This is not Peyronies Disease.   

I am going to jump on the post by my dear friend and partner because I know Liam will not take it personally and because I think it is a point that must now be addressed.

Quote from: Liam on June 16, 2007, 06:32:50 PM
In the past, our American Judeo-Christian culture frowned upon masturbation.  It was thought of as a sin against God and nature.  Even those with no particular religious beliefs would wince at the subject.  Remember the tales of going blind or growing hair on your palms.

I believe this explains, at least in part, the ease in blaming masturbation for Peyronies Disease even though there is no evidence to support it.

I think this explains nothing and it is absurd to dig so deeply to explain a connection when we see daily examples of people making the error of "cause and effect" reasoning simply because A precedes B.  It leads one to ask what social stigma has caused people to associate the 40 other commonly claimed links with Peyronies Disease, or for that matter the 40 things resulting in improvement.  I think the attempt to reach for such a rational is not only without factual back-up,  It side steps the question being posed.

It is not social mores, a specific religion, or stigma.  It is the flawed deductive reasoning that creeps into every discussion on every topic within every culture.  In this case, the connection between masturbation and Peyronies Disease was arrived at by the opposite of the deductive reasoning we fight to promote.  To simplistically hang this one example in a sea of such examples on the concept of social mores, is to ignore the daily battle we wage for deductive reasoning.  This is why it pulls my chain.  I think that by concluding that some people consider masturbation a sin -> therefore the association between masturbation and Peyronies Disease is the result; is to use the same flawed "A precedes B" reasoning we are addressing.  There is no evidence that stigma factored in the connection based on what was related but there is ample evidence of other patterns in deductive reasoning that lead to these conclusions.  We should be addressing those issues.  To me, this is an example of where the answer to flawed logic is guilty of the same offense as the original post.

Quote
I believe all evidence available today leads us away from the idea of trauma causing Peyronies Disease.  Trauma may cause injury and scarring.  This is not Peyronies Disease.   

I don't want to say I could not disagree more with a quote but I will say it would be difficult to disagree more with a quote.   

WOW!!!

Hey guys, slow down and interpret what has been said in the past posts for this old Southern raised on a farm boy.

Have not seen so many words said about subject without reaching a "climax" as to the cause and effect issue.

I agree that masturbation by and in itself does not cause Peyronies Disease (not really a disease, but a severe malady). However, the constant daily act of abusive masturbation can and will cause micro and sometimes more injury to the penile tissues.

Many urologists that I have talked with in my counseling work for prostate cancer and related men's health problems state that masturbation does not cause the disorder. However, most have stated that injury resulting from "over masturbation" in a severe manner can and will cause Peyronies. Since there is no way that it can medically be called a disease, the term disorder seems to me would be a better explantion of it.

Anyway, just had to jump in with my two cents. Since I have had the mess since the age of 24, much research has been done by me on the subject. To date, I have found nothing that supports the theory that Peyronies Disease is really a disease, but rather the result of injury to the penile tissue in some form. Bottom line, for me at least, is that masturbation done in an abusive way of any sort can and will cause Peyronies Disease. Will not address the moral issue of the subject.

Old Man

Quotebecause I know Liam will not take it personally

Absolutely not!  It makes for a lively discussion.

The social stigma surrounding masturbation must be considered a factor.  By numbers of posts, masturbation seems to be blamed as THE cause much more than sex with a partner, sports injury, trying to urinate with an erection, rolling over on a nightime erection :o, or shaking the dew from your lily (after urinating).  And, the stigma exists.  It is, at least, a variable, in the mix.

QuoteI believe this explains, at least in part, the ease in blaming masturbation

I chose my words in this statement to reflect my opinion that the stigma may tip the scales to blame masturbation rather than high cholesterol or some other culprit at least for some.  Understand I'm discussing the aggregate not any individuals.  You have to admit it makes a pretty good scapegoat.  There was at least one post where the member admitted to feeling guilty about certain acts and thought he was being punished.  He knew, himself, this was wrong.  These thoughts have come to everyone for at least some time.  "What did I do to deserve this?"  Now, what are the FIRST things that we think of...

To blame the stigma on religion is equally wrong.  Also, I do not mean to blame any person.  We are all products of our environment.  My purpose in discussing it is to try to relieve the guilt some may carry.

It is very hard to step outside of your surroundings and self evaluate.  You must consider all the baggage you carry (good, bad, and seemingly inconsequential).  With Peyronies Disease, there is no way to know the "cause".  It is human nature to want to blame something (part of the grief process) even though there may be nothing. 

Hawk, I respect where you are coming from on this.  Please understand, I know the "blame game" is multifactorial and multifaceted.  It is NOT just guilt.  For many, it may not even be a part.  For many, however, I believe it is.

QuoteI have found nothing that supports the theory that Peyronies Disease is really a disease, but rather the result of injury to the penile tissue in some form.

Old Man,

I will try to convince you otherwise by pointing to the high correlation between Peyronies Disease and other fibrotic conditions (Dupuytrens, frozen shoulder, lederhose).  Also, I think there would be a higher number of men with Peyronies Disease if trauma (injury) alone were the cause.

Doing abusive things to the penis can cause bad things whether it is abused during masturbation, sex, or any other activity.

Liam,


Your deduction is puzzling.  You mean just because a person is more likely to blame masturbation than high cholesterol you feel safe in leaping to the conclusion this is because they have a stigma imposed on them about masturbation ???

You then have to produce an answer as to why we don't we have people disproportionately associating Peyronies Disease with homosexuality, adultery, or fornication as opposed to marital sex?  This alone destroys such a theory.

However, what does explain the flawed association beteen masturbation and Peyronies Disease is that most men masturbate and they may very well first notice the obvious pain in their dick while masturbating and seldom during a cholesterol test.  This seems so obvious I can't believe I am typing it.  As a point of fact, most of the people associating Peyronies Disease with masturbation on this forum had a VERY secular outlook and presented with a glaring lack of inhibitions.  I on the other hand, happen to have been raised in a more inhibited era.  I believe masturbation and a million other things are sins, but I don't associate any of them with Peyronies Disease.  Your case for association and stigma is soundly undermined by the evidence.   

I could say that an association with stomach upset and antibiotics is because people used to think of antibiotics and  vaccinations as hogwash since germs were considered a figment of a few people's imagination.  Even though my fact was correct, my association and the conclusion could not be supported. 

Female-on top accident, soccer, masturbation, injection, erection in tight pants, rogain, anti-depressants, stress, catheter, hernia surgery, MSM, and many other things have been blamed for Peyronies Disease (repeatedly).  To single one of the few out where symptoms are actually revealed during the act, and then conclude that one alone is because of stigma does not hold water.

I see your contention that trauma does not cause Peyronies Disease to be a bit like saying heat does not cause fire just because heat can only cause fire in the presence of fuel and oxygen.  The young men with progressive Peyronies Disease on this forum after assorted injuries may in fact have developed Peyronies Disease 50 years later without the injury, but one can hardly discount injury as a huge component of Peyronies Disease.  Our own Old Man got Peyronies Disease at 24 from such an injury.

If everyone lives long enough they will probably develop arterial or heart disease.  That does not mean that because it is eventually inevitable in most people that there are not causative factors.  i say if something brings on heart disease 50 years early then they caused it. The same is true of Peyronies Disease.

The fact remains that in some individuals, that minus the injury, they may have never assembled the components necessary to cause Peyronies Disease.

I'm going to throw a statement out that may help clarify my position.

All injuries to the penis causing a bend are not Peyronies Disease.

Now, don't anyone think I mean it is any less important.  An infection may be bacterial or viral.  Both bad.  They have different treatments and some treatments in common.  This may be a good way to think about penile induration.

Guilt is no factor--/---------The Truth----------/--Guilt is the only factor  :)
     for noone                                                             for everyone

I will throw out the statement that the vast majority of injuries that result in a permanently deformed penis are Peyronies Disease.   If it is then a progressive condition it is by definition Peyronies Disease.

QuoteIf it is then a progressive condition it is by definition Peyronies Disease.

I agree if it progresses over time. 

Quotepermanently deformed penis

Except for spontaneous recovery or cured by something?  I think this is where we differ.  As you know, I believe these guys who have their "Peyronies Disease" disappear, had something else.  I would like to believe otherwise.  I am not convinced about the majority either.  Maybe.  I don't think most of the guys in their teens and twenties who had trauma during masturbation or sex have Peyronies Disease.  If you said over 40, I think I would agree.

BTW, Great discussion Hawk!!!!!

Liam:

No, I am not convinced by your statement relative correlation between the disorders. None of them can be called a "disease", but rather condition.

I have all three and they have been medically diagnosed as being caused by injury. My Dupuytren's has been caused by constant use of hand tools. My Ledderhose condition was caused by an injury while playing ball and wearing the wrong shoes as diagnosed by a "foot doctor".

All of the above, in my case, was caused by an injury to the affected part of my anatomy.

Old Man

Quote from: Liam on June 16, 2007, 10:58:17 PM
As you know, I believe these guys who have their "Peyronies Disease" disappear, had something else.  I would like to believe otherwise.  I am not convinced about the majority either.  Maybe.  I don't think most of the guys in their teens and twenties who had trauma during masturbation or sex have Peyronies Disease.  If you said over 40, I think I would agree.

I have to ask what your basis is for your conclusion.  I have yet to hear of a urologist with a strong focus on Peyronies Disease that did not claim varying rates of spontaneous remission, usually varying from 5% to 15%.  I think it is difficult to just say "I don't believe it".

I got Peyronies at 20. I don't know what I did, if anything, to bring it on. If it had resolved spontaneously, I would have gladly accepted that. Instead, it has gradually advanced despite trying different things to slow it down.

I just do not know if anything I have done has helped or hurt.

People do get better with therapy - just not everyone. Some people get better without therapy - just not everyone.

Why discuss it like this? It does not hurt to discuss it, but it is all so much mental whackety-whack to me.

Since we are all different, we are going to respond to this disease with a variety of emotional responses, and a very human desire to understand why. Some will irrationally blame themselves, or a girlfriend, or a stupid choice like tucking their penis into the pants too quickly. But none of us will ever really know why. And just like any other life stress, some will be able to weather this emotionally, and some will drown in their feelings ,flooded with negative emotional energy and self loathing.

This disease does not have a unifying theory, and does not have a single etiology. Not one single study has demonstrated a common cause in all patients, and so any therapy will also likely not help all patients.

I guess an injured penis that bends and then straightens back out in a week or two, is not Peyronie's Disease. If it takes three years, I am not so sure. But ultimately, what difference does it make? Common pathways of inflammation are present, and so is wound healing. In those of us with persistent disease, it seems to simply tip in favor of persistent pathology; wound healing gone awry.

Tim

I think its important to understand what Peyronies Disease is and what it isn't.

Most diagnoses of Peyronies Disease are made through a patient history (read my signature line) and a physical exam.  There is no imaging.  In other words, no objective test.  A patient goes into a doctor with a slightly bent penis.  The doctor palpates and finds nothing.  The patient says he had rough sex and now his penis looks different. Diagnosis: Peyronies Disease  Cause: Trauma  Treatment: Vitamin E

How many times a day does this happen?  Peyronies Disease is a "billing" diagnosis.  They're not going to do anything, anyhow.

Until a credible and reliable diagnostic criteria and testing are established and done consistently, doctors have no way of knowing the difference in Peyronies Disease and peyronie's-like conditions.  Until they know the difference, how can they make assumptions on spontaneous recovery.  There are no baseline measures.  Hell, most of the time there are no measures of any kind at any time.

There are a few doctors paving the way on this issue.  The majority say bent penis = Peyronies Disease

Here are some results of a survey of primary care physicians you've seen before:

QuoteSurvey of primary care physicians and urologist regarding Peyronie's disease
Author Block: Jeffrey C La Rochelle*, Laurence A Levine, Chicago, IL

Introduction and Objective: Peyronie's disease (Peyronies Disease) is a wound healing disorder of the penis with a reported prevalence of 3-9%. The pathogenesis remains unclear, and there is no known cure though a number of treatments are available. Peyronies Disease remains a distressing disorder for many men, many of whom seek advice from their physicians. This survey sought to evaluate the understanding and practices of primary care providers (PCP) and urologists (URO) with regards to Peyronies Disease. Methods: A 20 question multiple choice survey that included questions pertaining to the prevalence, natural history, associated erectile dysfunction, and treatment of Peyronies Disease was sent to 330 PCPs and 223 UROs throughout Illinois. Results: We received 152 surveys from PCPs and 98 surveys from UROs.

Responses were as follows.

Responses to selected questions by specialty PCP GU
Percentage (pct) that have seen a pt. with Peyronies Disease 70% 100%
Pct that believe Peyronies Disease to occur in less than 1% of men 63% 41%
Pct that have been taught that Peyronies Disease spontaneously resolves in > 50% of cases 17% 38%
Pct that believe Peyronies Disease does not occur in men under 40 yrs of age 17% 9%
Pct that do not believe erectile dysfunction to be frequently associated with Peyronies Disease 48% 37%
Pct that do not feel Peyronies Disease usually warrants treatment 21% 29%
Pct that were unsure if there was any effective treatments for Peyronies Disease 51% 1%
Conclusions: This survey of primary care physicians and urologists reflects their understanding of Peyronie's disease and its treatment, much of which is incorrect. Studies have shown that many men are hesitant to discuss sexual issues with their physician, and this problem can be exacerbated by their physician's lacking knowledge of the effects of Peyronies Disease and the available treatments. These incorrect notions regarding Peyronies Disease may be responsible for delays in diagnosis, referral, and initiation of appropriate therapy in the man with Peyronies Disease who is motivated to seek treatment. The findings of this survey are a call to improve education about Peyronies Disease for primary care physicians and urologists.

Keywords: Peyronie's disease, Penis, Questionnaire

American Urological Association Annual Meeting
May 21 - 26, 2005
San Antonio, Texas, USA

Any statistical generalizations about Peyronies Disease must be suspect.

I have to admit relying on self observation for a large portion of my knowledge of Peyronies Disease.  I have also seen the description 100 times - plaque and pain and curve.  Plaque is like the tape on a balloon, making it curve.  No plaque - No curve -No Peyronies Disease.  This is the goal of surgery.  Now, granted there are varying degrees of these symptoms.  But, these are "required", especially plaque (whether it can be palpated or not). 

I think some treatments can help, of course.

I guess, bottom line, is that I have never seen or heard of credible objective evidence of spontaneous remission.  If it existed, I'm sure someone would jump on publishing a paper. :-\ 


Old Man,

Whether a condition or disease, the fact you and I and a host of men have multiple fibrotic conditions including Peyronies Disease surely has to make you think its more than just all of us injuring the same body parts.  It can't be coincidence.

I have seen a doctor (ENT), with my own eyes, see a person with a moderate hearing loss in all frequencies.  The patient said he works around noise.  Doc said noise induced loss even though noise can't cause a loss at all frequencies.  Because a doctor said it, don't make it so.

I have early Dupuytrens in both hands, early lederhose right foot, frozen shoulder both, and good ole Peyronies Disease :(  No trauma to any of the areas.

Tim,

The etiology is there, hiding like H. pylori.

Guys,

This was very enjoyable for me.  Great night of discussion!

Liam

Liam,

This is a good discussion that brings out a point I always sensed.  You are correct that it is important to understand what Peyronies Disease is and what it isn't.  You clarify the need for research to establish this.  The problem is that without this answer, you then go on to assign your own unsupported criteria and definition to Peyronies Disease, a definition shared by no doctor that I know of.  You proclaim the very thing you say is lacking in research and you declare what Peyronies Disease is and what it isn't.

The fact of the matter is that the vast majority of men with Peyronies Disease have no other fibrotic diseases and the majority of men with other fibrotic diseases do not have Peyronies Disease.  You can write your own definition (which happens to conform to your personal experience) and define every one that is not just like you as having a heretofore unidentified "Peyronies Disease like disease".

It all rests of circular argument that goes like this:
Peyronies Disease never resolves, and it can only be triggered by injury if it were going to soon happen anyway. 
When asked about those that resolve, you say -> That was not Peyronies Disease.  It was Peyronies Disease-like.
When asked how you know, your answer is -> because it resolved

I would readily embrace such a radical unsupported position if it were not so radical and unsupported. ;)

I am off to do penitence for masturbation before I go blind  ;)

I heard that masturbation caused blindness, so I stopped doing it all the time when I needed glasses. Proof!

One thing that bugs me about the issue of "plaque" is that there is no anatomic or physiologic definition of that term. It is dependent on the palpation skills of the urologist (or even less informed patient). So what does it mean to say "I have no palpable plaque"?

Does it mean that a tissue sample would be totally normal? That a microscopic analysis would be perfect? That even looking at the tunica would be helpful? I Would argue that the answer to all of these questions is no.

This website, recently mentioned here, shows a surgical technique for grafting that replaces scarred tunica with normal tunica recovered from deep on the penile shaft. figures 2 and 3)...

http://www.refertilisieren.de/literatur/penilecorporoplastik.pdf

As you can see, it is not that clear how different looking the contracted part is compared to the straight part - even when the skin is degloved.

A review of histology of tunica shows that men with Peyronies Disease have abnormal histology of their penile tunica even in the unaffected area. (ie without scar). Alterations in function of TGF pathways are found in tissues removed from men with Peyronies Disease, as well as alterations in pathways that help heal like MCP-1 levels.

To say any longer that plaque is a required defining characteristic for Peyronie's Disease is to ignore a large body of evidence that says the definition of plaque is too vague to be useful any longer, and which is starting to reveal the complexity of the disease (and the varieties of it).

Tim





References:

Lin, Gui-Ting. Wang, Zhong. Liu, Ben-Chun. Lue, Tom F. Lin, Ching-Shwun.
Institution   Knuppe Molecular Urology Laboratory, Department of Urology, School of Medicine, University of California, San Francisco, CA 94143-1695, USA.
Title   Identification of potential biomarkers of Peyronie's disease.
Source   Asian Journal of Andrology. 7(3):237-43, 2005 Sep.
Abstract   AIM: To identify proteins that are differentially expressed in cells derived from normal and diseased tunica albuginea (TA) as related to Peyronie's disease (Peyronies Disease). METHODS: Cells with characteristics of fibroblasts were isolated from two tissue sources. Those from the plaque of patients with Peyronies Disease were designated as PT cells, and those from the normally-appearing TA of the same patients were designated as NT cells. Messenger RNAs of these cells were analyzed by real-time polymerase chain reaction (RT-PCR) for the expression of monocyte chemoattractant protein 1 (MCP-1). Crude protein lysates were analyzed by surface-enhanced laser desorption/ionization mass spectrometry (SELDI-MS) with IMAC30-Cu, CM10, and H50 chips. Each lysate was then separated into six fractions, which were further analyzed by SELDI-MS. RESULTS: RT- PCR analysis showed that PT cells expressed higher levels of MCP-1 than their counterpart NT cells. SELDI-MS analysis showed that the crude protein lysates of all four cell strains produced similar and reproducible protein profiles on IMAC30-Cu and CM10 chips. Additional SELDI-MS analyses with the fractionated lysates detected three proteins of 11.6 kDa, 14.5 kDa, 22.6 kDa that were upregulated in PT cells and two proteins of 6.3 kDa and 46.9 kDa that were downregulated in PT cells. CONCLUSION: MCP-1, which is often involved in tissue fibrosis, was expressed at higher levels in PT than that in NT cells. Five potential biomarkers for Peyronies Disease were identified by SELDI-MS analysis.


Nale, Dorde. Mii, Sava. Vukovi, Ivan. Radosavljevi, Radoslav.
Institution   Institut za urologiju i nefrologiju, Klinicki centar Srbije, Beograd.
Title   [Induratio penis plastica--localized or diffusive fibromatosis of tunica albuginea penis?]. [Serbian]
Source   Vojnosanitetski Pregled. 63(11):939-44, 2006 Nov.
Abstract   BACKGROUND/AIM: The part of the tunica albuginea that is not affected by localized pathological fibrosis is excised by the Nesbit contralateral excisional corporalplasty in patients with induratio penis plastica (IPP). The aim of this study was to find out if there were any histological changes of the macroscopically normal tunica albuginea excised during the Nesbit corporalplasty. METHODS: A total of 31 patients, mean age 45 +/- 7.65 years, were surgical treated for extensive penile curvature (impossible or difficult penile imission in the vagina), using the Nesbit surgical technique. The tunica albuginea tissue was manipulated by Allis's clamps and excised in the shape of a diamond and placed in the 4% formaldehyde solution for histological analysis. The excised tunica albuginea was not wider than 1 cm, while the histological preparations were 3 to 5 microm thick, and they were stained with hematoxylin-eosin. The excised tunica albuginea tissue appeared macroscopically (anatomically) normal in all of the operated patients. In 28 (90.3%) patients opperated for dorsal curvature of the penis, the tissue of the tunica albuginea was excised from the urethral ridge, while in 3 (9.7%) patients operated for lateral curvature, the tissue was excised from the lateral corpus cavernosum. RESULTS: The histological results were normal in 12 (38.7%) patients, while in 19 (61.3%) cases the findings indicated fibrosis of tunica albuginea. No significant difference in the patients age was found between these two groups (p = 0.09). The analysis of a total number of histological results of the patients with tunica albuginea fibrosis in relation to the patients with normal results showed that there was no significant difference (chi2 = 1,2; df = 1; p > 0.05), suggesting that the macroscopically normal tunica albuginea is not always expected to yield normal histological result. CONCLUSION: Significantly more reported histological results of tunica albuginea fibrosis in the location that appeared normal macroscopically (chi2 = 27.5; df = 1; p < 0.01) indicated that, in the majority of IPP patients (61.3%), pathological lesion was diffusive with localized phenotypic expression plaque in the tunica albuginea, showing that, in the majority of cases noxa acted diffusely.



Simone M. Hauck, Ekkehard W. Szardening-Kirchner, Carolin. Diemer, Thorsten. Cha, Eun-Sook. Weidner, Wolfgang. Eickelberg, Oliver.
Institution   Department of Urology and Pediatric Urology, Justus Liebig University Giessen, Rudolf-Buchheim-Str. 7, 35385 Giessen, Germany.
Title   Alterations in the transforming growth factor (TGF)-beta pathway as a potential factor in the pathogenesis of Peyronie's disease.
Source   European Urology. 51(1):255-61, 2007 Jan.
Abstract   OBJECTIVES: The development of fibrotic diseases is associated with alterations in the transforming growth factor beta (TGF-beta) pathway. We have investigated the expression and activity of Smad transcription factors of the TGF-beta pathway in primary tunical fibroblasts derived from patients with Peyronie's disease and from controls. METHODS: Primary fibroblasts were established from biopsies obtained from plaques of 16 patients with Peyronie's disease or the tunica albuginea of 8 control patients. The expression and activity of Smad transcription factors in control and TGF-beta-stimulated primary fibroblasts were investigated at the RNA and protein level by reverse transcription-polymerase chain reaction, Western blotting, and immunofluorescence. RESULTS: RNA expression levels of Smad3 and Smad4 were significantly increased in fibroblasts from patients with Peyronie's disease. When stimulated with TGF-beta1, fibroblasts showed rapid nuclear translocation of Smad2/3, as soon as 15 min after stimulation. This effect was more pronounced and exhibited an earlier onset in fibroblasts from patients with Peyronie's disease, compared with controls. In addition, an increased nuclear retention time of Smad4 was observed in fibroblasts from patients with Peyronie's disease. CONCLUSIONS: The expression and activity of Smad transcription factors of the TGF-beta pathway is increased in fibroblasts of patients with Peyronie's disease. Alterations in the TGF-beta pathway seem to be a pathogenetic factor in the development of Peyronie's disease.

QuoteA review of histology of tunica shows that men with Peyronies Disease have abnormal histology of their penile tunica even in the unaffected area. (ie without scar). Alterations in function of TGF pathways are found in tissues removed from men with Peyronies Disease, as well as alterations in pathways that help heal like MCP-1 levels.

I really hope that everyone here latched onto this gem submitted by Tim.  Liam is certainly asking the right questions.  What if one can be walking around with those 'histological changes' going on in their outwardly normal tunica?  Perhaps the difference between one who contracts Peyronies from a minor trauma and one who heals successfully from significant trauma is all about just this!  And what if, in fact, other structures in the body can undergo the same or similar changes.  This could explain other conditions like the ones noted by Liam.  So what if Peyronies is to these underlying changes like a hip fracture is to osteoporosis?  Thus, in theory, one could walk around for much of their life with Peyronies susceptibility and not exhibit any symptoms and, in fact, even die of old age symptom free.

And then, looking back upstream, one has to ask 'what would cause these histological changes?'.  At that point one could begin tallying up their own short list of potential suspects.  My list would include such things as:

1)  Out of control systemic inflammation  (my personal favorite as many of you know!)
2)  Drugs (licit or illicit)
3)  Genetic factors
4)  Nutritional imbalance

I'm sure others could come up with more amusing candidates.  But if we are going to make headway against Peyronies, we definitely need to be attacking on the level of this underlying histology that Tim is referring to.  That is exactly what is instigating this condition just like osteoporosis instigates hip fractures in susceptible individuals.  And even setting the hip will not help a whole lot if the underlying osteoporosis is not addressed.

So perhaps a more definitive test for Peyronies would be a 'tunica biopsy'.  But perhaps I should not be giving the doctors ideas.  Tunica biopsies seem a bit invasive.

Perhaps this whole concept could also explain why some Peyronies patients seem to get better, others seem to stay the same, and still others seem to deteriorate over time.  Perhaps this has to do with how pronounced the histological changes are.

Too bad researchers aren't looking more directly at how to reverse those histological changes on a cellular level rather than attempting to address Peyronies itself.  It occurs to me that one could experience measurable change in that histology without noticeable change in the Peyronies severity itself.  Thus it might be easier to ferret out the solution for the underlying problem than for the physical manifestation.  Perhaps I am rambling here.  Just thinking out loud.  These are all the questions and thoughts that come to my mind from reading that little point that Tim has introduced.

- George

Tim
Like George, I thought your posting on this was enlightening.
In my days as a research chemist, one technique I used when I was stuck for a way to improve a process was to stop and think 'ok, if I can't improve it, how can I make it worse?' Very often this trick would disclose the controling mechanism which I could then apply to improve the process.
So, what would we do to cause an existing case of Peyronies Disease to worsen? Are there any substances we know about which definitely promote Peyronies Disease? It is worth considering because there are no substances we know about (yet) which definitely cure Peyronies Disease.
Regards,
Percival

Hi: Maybe this will make sense to someone. I had corrective surgery for an entrapped nerve from a botched inguinal hernia operation 3 yrs ago. I flew to WI last Dec. where the nerve was cut and the mesh replaced with collagen. Ouch! After a month of recovery I tried to work out at the gym. My thigh became painful and my leg swelled up. Diagnosis lymphedema - far worse than the Peyronies Disease which I noticed upon resuming sexual activity. There good news! - my lymph nodes started working again but the Peyronies Disease remained. I may have had other contributing factors like taking a beta blocker for years but am wondering if the pressure of the plane flight after surgery could have caused both problems. I know that you are supposed to wear compression stockings after surgery and wonder if the pressure caused a blood vessel in my leg to collapse as well as damage the corpus cavernosum. Any thoughts? Alan

The full article.  Old stuff for some.

http://eji.egyptscience.com/previous/jan05/jan05-01.pdf

I am not sure I can make a physiologic connection between the travel and the clot and Peyronies.

Tim

Tim- Maybe it was a coincidence. Many of my medical misfortunes seem to be attributed to those damn coincidences. Example-The medical tests for the lymphedema was inconclusive not showing a clot or inguinal lymph damage but I had all the symptoms of lymphedema for a few months. It's just strange that I also came down with Peyronies Disease at the same time. The thought occurred that they clamped down my penis during surgery causing the Peyronies Disease. I don't recall any bruises (I was too concentrated on my groin pain to notice much else) but this is another possibility. Not that it matters much since the end result is the same.

Tim do you know how pentox works on a molecular level? I believe it reduces the fibrin in the blood.. How does it do this and how might this effect an already damaged tunica?  Anyone? Thanks
Alan

QuoteSao Paulo Medical Journal
Print ISSN 1516-3180
Sao Paulo Med. J. vol.125 no.2 São Paulo Mar. 2007
 
CASE REPORT

Human penile ossification: case report

Ossificação no pênis humano: relato de caso


Homero Oliveira de Arruda; Hudson de Lima; Valdemar Ortiz

Department of Urology, Universidade Federal de São Paulo - Escola Paulista de Medicina (Unifesp-EPM), São Paulo, Brazil

Address for correspondence


Key words: Penile induration. Calcinosis. Heterotopic ossification. Penile diseases. Penis.

--------------------------------------------------------------------------------

INTRODUCTION

Ossification in the human penis is such a rare condition that only 34 histologically evident cases have previously been reported in the literature. Several conditions have been correlated with this problem and the most frequent is Peyronie disease.1-4

In the present report, a further case of human penile ossification is presented. The importance of this report lies in the extent of the penile ossification, as demonstrated by the radiological and histological confirmation. In addition, we have reviewed all the previously reported cases and offer some comments concerning etiology.

CASE REPORT

A 59-year-old white man was referred with a one-year history of slight pain upon erection and during sexual intercourse. He also complained of hard plaque near the base of the penis. One year earlier, he had sustained blunt trauma during intercourse, after which he began to experience pain when the penis became turgid. There was no history of metabolic disorder or erectile impotency.

Examination of the penis revealed the presence of a firm fixed mass extending over the proximal third of the penile shaft. It was irregular, measuring 3.0 x 3.0 x 2.0 cm, and involved the corporal sponge without surface extension. There were no other relevant clinical findings. The results from routine laboratory evaluations were normal. Radiography on the penis revealed irregular calcification in the same position as the palpable mass and in the septum of the proximal inner third of the penis (Figures 1, 2).
(http://www.scielo.br/img/revistas/spmj/v125n2/a12fig01.gif)(http://www.scielo.br/img/revistas/spmj/v125n2/a12fig02.gif)

The calcified mass was excised surgically through a dorsal midline incision of the tunica albuginea, extending across the corpus cavernosum on both sides. The defect of the corporotomy was closed using a watertight running 4-0 vicryl suture, without graf-ting. A quick examination of the specimen revealed an irregular mass of grayish brown tissue with hard white calcified foci. The postoperative course was uneventful and the patient reported a full straight erection without pain. Histological examination revealed cancellous bone surrounded by dense collagen tissue.


DISCUSSION

Several conditions have been correlated with penile ossification. The most frequent of these is Peyronie disease, but correlations with penile trauma, other diseases like metabolic disorders (for example gout and diabetes mellitus), intracavernous self-injection of vasoactive agents and chronic hemodialysis have also been reported.3-5 One extremely rare case of a congenital condition has been reported.2

McClellan was probably the first to report human penile ossification, in 1827, and Gerster and Mandelbaum were the first to do a histological study on the specimen, in 1913.apud 2 They concluded that the problem developed in the connective tissue, from the dorsal side of the septum between the corpora cavernosa, as a result of a metaplastic process. In 1933, Vermootenapud2 described a case of ossification in a man who had suffered a gunshot injury to the penis. Histopathological analysis on the mass revealed metaplastic bone marrow and cartilage formation at the fibrosis site. Numerous other cases of small calcifications in the penis have been found by macroscopic observation or X-ray. The single case of congenital ossification of the penis was described by Champion and Wegrzyn in 1964. That child also had a cleft scrotum.2 More recently, Vapnek reported a case of heterotopic bone formation in the corpora cavernosa of a patient with papaverine-induced priapism.5

It is well known that many animals present a penile bone called "os penis", "os priapi" or "baculum". It is usually located in the glans penis and aids copulation. In whales it may measure around two hundred centimeters in length and forty centimeters in circumference. In dogs it serves as a channel for the urethra, while in bears and wolves, it is essential for producing a rapid erectile state for copulation.1 It seems that, during later stages of evolution, the penile bone diminished in size and, in some species, appears as an insignificant structure of 10-20 mm in length. In chimpanzees, mans nearest kin, there is no "os penis", but only a virtual fragment of bone in the glans.1

Ossification of the cavernous tissue in humans is unrelated to phylogenetic structure. Instead of aiding copulation, as observed in the animals that have such ossification, in men it is sometimes uncomfortable and possibly painful. It is often multiple and found in the shaft as well as in the septum and tunica albuginea, while in animals it is single and situated in the glans. In most of the cases in which human penile ossification was reported, it appears to have been acquired during adult life and was related to trauma and Peyronies disease.1,4 According to Devine,6 the fibrous tissue of the plaque can reach maturity without calcification, but calcification is a sign of the end of the healing process and may be present in 25% of the patients.

It is most likely that ossification, like the plaque in Peyronies disease, is a scar and not the result of an inflammatory or autoimmune process. In all these conditions, human penile ossification appears to be a metaplastic process. Somers and Dawson3 have shown that the disease most likely begins with buckling trauma that causes injury to the septal insertion of the tunica albuginea. The fibroblastic tissue thus formed may provide good conditions for metaplastic bone formation.4,5

There is no good medication for treating Peyronies disease, because few medical management methods have been subjected to double-blind drug testing. For surgery to be considered, candidates must present mature and stable disease. It is only recommended when the curvature is enough to impair coitus.

CONCLUSION

Our understanding of this case is that the ossification in our patient probably developed as a consequence of unusual repair of the tunica albuginea, following some blunt trauma sustained during sexual intercourse.

REFERENCES

1. Sarma DP, Weilbaecher TG. Human os penis. Urology. 1990;35(4):349-50.        [ Links ]

2. Champion RH, Wegrzyn J. Congenital os penis. J Urol. 1964;91:663-4.        [ Links ]

3. Somers KD, Dawson DM. Fibrin deposition in Peyronies disease plaque. J Urol. 1997;157(1):311-15.        [ Links ]

4. Guileyardo JM, Sarma DP. Human penile ossification. Urology. 1982;20(4):428-9.        [ Links ]

5. Vapnek J, Lue TF. Heterotopic bone formation in the corpus cavernosum: a complication of papaverine-induced priapism. J Urol. 1989;142(5):1323-4.        [ Links ]

6. Devine CJ Jr, Horton CE. Surgical treatment of Peyronies disease with a dermal graff. J Urol. 1974;111(1):44-9.        [ Links ]

  Address for correspondence:
Homero Oliveira de Arruda
Rua Borges Lagoa, 1065 — 7º andar
São Paulo (SP) — Brazil — CEP 04038-032
Tel. (+55 11) 4521-0925
E-mail: arrudas@dglnet.com.br

Sources of funding: None
Conflict of interest: None
Date of first submission: June 30, 2006
Last received: March 4, 2007
Accepted: March 28, 2007

AUTHOR INFORMATION

Homero Oliveira de Arruda, MD, PhD. Department of Urology, Universidade Federal de São Paulo — Escola Paulista de Medicina (Unifesp-EPM), São Paulo, Brazil.
Hudson de Lima, MD. Department of Urology, Universidade Federal de São Paulo — Escola Paulista de Medicina (Unifesp-EPM), São Paulo, Brazil.
Valdemar Ortiz, MD, PhD. Full professor, Department of Urology, Universidade Federal de São Paulo — Escola Paulista de Medicina (Unifesp-EPM), São Paulo, Brazil.

Source: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-31802007000200012&tlng=en&lng=en&nrm=iso

Excerpt:
Decreased arterial inflow and increased venous outflow both contribute to ED. Disorders of the hypogastric-cavernous arterial bed include large artery disease, constriction of the lumen of the small cavernosal arteries, and arteriolar insufficiency (9). Recent studies have shifted the focus of vascular ED to the penis itself. Profound ischemic changes in the corpora cavernosa, including smooth muscle cell degeneration, perisinusoidal fibrosis, and vascular disruption, have been found on examination of tissues removed during penile implant placement, e.g. in patients with vascular compared to those with neurogenic ED (10).

Lue (11) described five kinds of lesions associated with venoocclusive insufficiency, with the majority of cases being due to intrapenile lesions, including a distorted tunica albuginea as in Peyronie's disease with associated incompressible veins, and cavernosal fibrosis, loss of muscle fibers, and NO-generating capacity, resulting in an inability of the corpus cavernosum to relax. He also described inadequate release of relaxing neurotransmitters in neurogenic and psychogenic ED. Speculatively, a vicious cycle may operate. Impaired resting penile circulation may result in cavernosal ischemia, leading to corporal fibrosis that impairs penile sinusoidal relaxation. Maximal vasodilatation may be inhibited by diminished NO formation due to nerve and smooth muscle cell degeneration or to psychogenic or other neurogenic factors. The increased fibrosis and reduced NO formation further impair penile circulation, producing additional ischemic change in the corpora cavernosa.

Source: http://jcem.endojournals.org/cgi/reprint/80/7/1985.pdf

Excerpts: In arteriosclerosis ED is exaggerated by induction of fibrogenic cytokine, transforming growth factor-beta 1 (TGFβ-1) and its type II receptor under continuous ischaemic conditions, resulting in fibrosis of the
penis [50].

Source: http://www.kup.at/kup/pdf/5420.pdf

Excerpts are not representations of or a summary of the report.

Hello everyone, and thank you to the creators of this forum and PDS. 

I developed Peyronie's Disease quite suddenly in March of this year, AT AGE 27.  One day everything was fine; the next, my penis had a 20-30 degree upward bend in it during erection, was signifcantly narrowed beginning just below the head (mainly on the upper right side where the palpable scar tissue appears to be located), and my penis was about an inch shorter.  Not knowing what the problem was, I at first tried to bend and stretch my penis into its former shape.  (I did not experience any significant pain as a result of doing this.) 

A urologist diagnosed my condition in late March, and I began taking vitamin E.  The doctor recommended 400 ICU per day, but after discovering 800 ICU used to be the suggested dosage, I began taking the latter amount and continued for about 3 months with no apparent effect.  Now it is nearly 6 months since my condition appeared and there has been no visible change.  My understanding is that Peyronies Disease is pretty rare in men my age.  I have also heard that when Peyronies Disease occurs in younger men, its chances of healing without (and with) treatment are better.  At the same time, I've come across a frustrating amount of conflicting claims regarding Peyronies Disease which have caused me to doubt this and so many other "facts" about the condition.

Since the cause(s) of Peyronies Disease are unclear, and my situation seems atypical among most with Peyronies Disease, I'll divulge some further information about my case. 

In January 2007, I experienced a painful break-up of a 2-year relationship, estrangement from all of my formerly close friends and job loss, all coming on the heels of two very stressful years of trying to get a struggling non-profit organization off the ground.  After January's crises, I was not examined for clinical depression, but for several weeks I was only sleeping 3 hours a night, eating about one meal per day, only leaving the house for work, using alleyways to avoid running into people I knew on the street... not suicidal by any means, but not feeling very well, either. The 15 pounds I lost during this time are perhaps more significant considering I have a small frame and have always been skinny: standing 5'9" tall, I normally weight about 150lbs.

From January to March 2007, I was also selling plasma 1-2 times per week to pay my rent, including once when I was sick with a fever.  In mid-January, I nearly put myself in the hospital with whiskey-induced alcohol poisoning, after which I stopped consuming alcohol altogether. (Prior to this one-time event, I was only a very light drinker.)  With little else in my life providing comfort, I began masturbating somewhat obssessively, sometimes two and even three times daily, for long periods of time (up to 5 or 6 hours) with the assistance of internet pornography and sex chat rooms.  I suspect this obssessive masturbation, likely coupled with the general strain on my body, is what caused my Peyronies Disease.  Indeed, the scar tissue even seems to correspond with the grip I was using at the time-- an unusual one for me having to do with how I was sitting relative to the position of my laptop during this unfortunate online escapades.

After being diagnosed, I stopped the obsessive masturbation and have been trying to take much better care of myself in general.  Although Peyronies Disease has brought additional stress and insecurity, I am feeling much better emotionally.  However, I am still fairly unhappy with my life and dealing with the ongoing stress of persistent underemployment. 

Since developing Peyronies Disease, I have had intercourse on two occassions with the same person, a former girlfriend.  I discussed my condition with her after we had sex the first time.  She said she did notice a difference in the shape and size of my penis compared to when we had dated years ago, but that intercourse was not uncomfortable and still pleasurable for her.

I do experience mild pain during erection, particularly the longer I am erect, along with some loss (or ast least change) of sensation.  I also I experience mild pain in the scar area after erection, but not very often otherwise.  Most recently, I have noticed that blood vessels in my penis, visible during erection, narrow significantly and abruptly when passing into the area of the plaque/scar.  I don't know if this is new or I've just noticed it.   

If at all possible, I would really like to correct this problem.  Yeah... I'm sure I'm not the only one! But based on the particularities of my situation, what do you all think should be my next course of action?  Potaba?  Colchicine?  Verapamil?  Neprinol?

Any help would be tremendously appreciated.

Hector,

Welcome to the PDS forum.  It sounds like you had a short trip through hell there my friend.  It is good to hear that you seem to be coming out the other side. You provided a lot of information in your very articulate post.  I think your assessment of the cause and your general understanding of Peyronies Disease seem to be on track.  You were definitely unwise in your treatment of your body.  Those are the exact things that need to change ie: less stress, more rest, nutrient dense food with a generally healthy diet.  I won't be specific at this point.  Just do better.

You specifically asked

Quote from: hector on September 10, 2007, 10:32:27 PM
what do you all think should be my next course of action?  Potaba?  Colchicine?  Verapamil?  Neprinol?

.  My first answer would be none of those.  The answer for the best thing you can do orally would probably be to take Pentox (prescription), Arginine (supplement), and Viagra (prescription). This is often referred to as the PAV cocktail. Clearly Viagra at 25 to 50 mg per day is the most expensive part of this.  There are over the counter supplements that are similar but much weaker PDE5 inhibitors since many find the $3 to $6 dollars a day for Viagra prohibitive.

If you have not been lurking and reading a lot on the forum, go to the "Child Boards: Newly Diagnosed Highlights -" section under the main board and read the highlights of "Oral Treatments".  If you want to do all that can be done that could possibly help, I would include VED or Traction along with the PAV cocktail.  I would try traction if you have the time since there is a small chance that Pentox and the VED might cause some conflict.

For any follow-up on these topics post under the appropriate topic.

Due to the rapid onset of symptoms (literally overnight). I suspect trauma as the cause.  If this is the case, there is a better chance you will not get any worse.  As you know the "typical" case has a slow onset.  These tend to progressively worsen. 

Unfortunately time is the only way to tell.  Have hope.  You can "work" with 20-30%.   ;)

Hawk offered sage advice.

I understand the pressures, mostly self imposed, of running a not for profit organization.  It is a humbling experience.  My views of the world have changed 180 degrees since my early days in the field.  I used to think greed was limited to big business and politics.  The greediest, most back biting, meanest people I've ever met were in the "not for profit industry".  It is enough to make an honest man stress out.  Hang in there.

Welcome Hector

Your description seems to be right on - it sounds like chronic/acute trauma led to your condition. I have a couple of thoughts. First, read Hawks post carefully for it tells you the best way to get from point A to B, which is by reading the "Child Boards". The primary advantage of that is that a lot of "chat" has been flossed out and what is left are posts that inform.

Check out the VED for two reasons. First, getting an erection may be harder to do for reasons of pain and depression. Thus, the VED takes sexuality out of the equation. Instead, the induced erection feels like taking care of your penis, instead of feeling like a sexual moment. This stands to help you particularly because of the sexually addictive component of your story. I went through a painful period of using porn to get erections daily because I felt I "had to" (you know, use it or lose it). The daily erections probably did help my Peyronies, since I did not progress much and erections help in terms of preventing contractile processes and in terms of delivery of oxygen to the tissue. For you the use of the VED will help prevent relapse into addictive use of porn. The memory of it hurting you may not be enough to avoid returning to that either.

The VED also helps prevent progression and may help in decreasing TGF activity, so it may be helpful on lots of levels.

The PAV cocktail is also probably worth taking, and a surgical fix may also work for you if nothing else helps, given the traumatic nature of your cause (meaning it is less likely to recir).

Welcome!

Tim

I've had the same problem with the obsessive masturbation and it probably added to my problem. I've stopped quite sometime ago and don't wish to be part of that unnecessary and wasteful experience.

Quote from: Liam on September 11, 2007, 06:12:53 AM
Due to the rapid onset of symptoms (literally overnight). I suspect trauma as the cause.  If this is the case, there is a better chance you will not get any worse.  As you know the "typical" case has a slow onset.  These tend to progressively worsen.

I've read on several occasions that Peyronies disease can be progressive.  Is Liam saying that progressive damage only occurs with people who are genetically susceptible to Peyronies.. i.e. those who possibly also have Dupuytrens, and that it will stabilize in those who acquired it through trauma? Or can progression also take place after trauma, because the interface between the damaged and normal cells is vulnerable to futher damage, simply because it is an interface?
I'm asking this because I find the prospect of progression quite worrying, even though I believe my Peyronies was caused by abuse of the penis through excessive masturbation. The onset in my case was quite slow.. 6-9 months or so, and it appears to have stabilized.  I don't have Dupuytrens.
And is the recommended treatment any different for genetic cases as opposed to trauma cases?

Shout,

I make no attempt to explain Liam's comments for him.  He is quite capable of that so I offer my own.

I suspect that everyone that has Peyronies Disease is physically susceptible in varying degrees.  Whether they are  susceptible due to genetics or only susceptible because of diet, stress, inflammatory, and other unknown processes going on in the body is a good question.  In fact, I think it is such a good question that no one has the answer.  Certainly genetic susceptibility cannot be concluded only by the the presence or lack of presence of Dupuytrens Contracture.

My guess is that whatever degree of genetic susceptibility we have (for the good or bad), that there are varying degrees of triggers.  High susceptibility requires a low trigger.  Low susceptibility requires a high trigger (such as slamming a car door on your penis while leaving a nudest colony). It is also my guess and that of others, that there are things we can do to lower our susceptibility somewhat.  That is the entire basis of most treatment approaches whether prescribed or nutritional or whatever.  If we have a high genetic susceptibility can we lower it enough ???  Who knows?  Does lowering is some slow the disease or is it more like an on/off switch ?  Again, who knows ???

I personally am not convinced that rapid onset indicates more significant trauma as the trigger.  I am also not convinced rapid onset is atypical since the forum is full of such stories.  Dr Levine indicates the rate of onset varies widely and offers no speculation as to why.

Maybe it begins to be clear why we need research that only comes from a much more pronounced awareness than we now have.

Thank you Hawk, for your reply

my question was really more to do with progression (or otherwise) of the disease rather than initial susceptibility. Perhaps Liam will be able to address progression.

But as we're on susceptibility...

Quote from: Hawk on September 12, 2007, 08:47:30 AM
I suspect that everyone that has Peyronies Disease is physically susceptible in varying degrees. 

... I would go further and say that every adult with a penis is susceptible in some degree to Peyronies, the main variables, other than genetic predisposition, being age and the amount you masturbate.

I have Peyronies, I believe, simply because I am over 50 years old and on one particular day, having never heard of Peyronies disease and not knowing the risks, I went too far... masturbating while my penis was still inflamed from the previous time.  I don't believe you have to slam your tool in a car door to get Peyronies if you're low risk. Those who get it from some sudden trauma such as that or during sex are just plain unlucky. I think it's more of a wear and tear issue (from masturbation, not normal sex), in the same way that joggers, for example, have an increasing risk of joint injury as they get older...

This is all just my opinion, of course. I'd actually be quite relieved if you came back and said I was way off the mark....

Quote from: shrout on September 12, 2007, 11:49:15 AM
... I would go further and say that every adult with a penis is susceptible in some degree to Peyronies, the main variables, other than genetic predisposition, being age and the amount you masturbate.
...Those who get it from some sudden trauma such as that or during sex are just plain unlucky. I think it's more of a wear and tear issue (from masturbation, not normal sex), in the same way that joggers, for example, have an increasing risk of joint injury as they get older...

This is all just my opinion, of course. I'd actually be quite relieved if you came back and said I was way off the mark....

You are way off the mark - Feel better?  :D

Shrout,

I do believe you are way off the mark.  I think masturbation is defined as sexual self-stimulation.  In that definition I guess one person's masturbation could be masochistic hanging from a rafter by their penis (similar to slamming it in a car door ). Without referring to studies, I feel safe saying that 75% of men over 40 masturbate and do so with no knowledge of Peyronies Disease.  They also do so with the full image of their penis as indestructible since 99% masturbated very frequently as a teen or young man, most several times in one day at some time in their life.  At fifty they are no more concerned or cautious, just likely to be far less frequent.  Sooooo, if 75% of men over 40 masturbate with little monitoring of whether their penis is a bit tender and only 1% -10% ever get Peyronies Disease, your contention that masturbation is a big factor does not hold water.

I also speculate that typical masturbation is no more traumatizing than foreplay and sex with a partner.  So unless we have far different things in mind when we discuss sex and masturbation, I ain't buying it for a minute.

I have to admit I am assuming I know the range of normal masturbation and sex.  Maybe I have lived in the dark.  Have Liam tell you his Buddy Hackett joke (it is very funny) - Maybe if we knew everything there is to know we would be astounded at how other people treat their penis.

Hawk

With all due respect, I think it is more safe to assume that some men abuse their penis for a varitey of reasons. Masturbation until the point of swelling, redness, pain and even damage are not as uncommon as you might think. This delves into the realm of addiction and compulsive behavior - almost defined as the doing of something even when it is demonstrated to cause us harm.

I do not think that a "lot" of masturbation is harmful. However, there is always some sort of excess to this, and hour upon hour to the point of pain, driven coumpulsively has been associated with the onset of Peyronie's in more than one description of the onset here. Of course, we do not know for sure if this is a cause or a coincidence, but I think it is possible.

Tim

Tim,

How do you like my subject title  ;D

Tim, you may be right, I have no clue how we would ever know.  I guess it is just difficult to imagine one more obsessed than I have been from the point of about 12 years old.  I never caused bruising or swelling,  Maybe a bit of skin irritation from time to time.

I agree in principle that if a man causes enough injury to make his penis swell whether in sports or masturbation it could trigger Peyronies Disease.  It seems we need some clarification when we discuss this because when we say intercourse is not likely to cause Peyronies Disease maybe someone interprets sex as jumping off of a springboard and trying to hit his partner with an erect penis from 30 feet away. 

It all keeps going back to Liam's joke about whether you gently tap the dew from your unit when you finish at the urinal, or whether you grab it with two hands and wring it out.


PS: I wonder why zoo monkeys don't all have Peyronies Disease?

If overnight you have symptoms that remain unchanged, this must be from a significant trauma.  This is not to say there is no trauma or micro trauma involved in cases that progress for 6+ months before stabilizing (and may possibly progress later).

In the past I have labeled these as two different conditions.  Others think differently, but those are just labels.  The important thing is to realize there are possibly different outcomes for fibrosis from different precipitating factors.

As far as the other subject, I'm thinking we should have a "National Be Kind to Your Penis Week".

QuoteI remember a joke Buddy Hackett told on Carson's tonight show.  It has been over 25 years. 

A man went in to the doctor and the doc said, "How can I help you?" 

The man replied, "I have a gnarled thing"

The doctor proceeded to examine the man and agreed it was quite gnarled.  The doctor was at a loss as to what to do and advised the man to come back for a follow up in two weeks.

Two weeks later the man walked into the doctors office and amazingly he was no longer gnarled.  To this the doctor said, "This is great.  How'd you do it?"

"Well doc, I tapped it straight"

"You what"

"I tapped it straight.  I was in the men's room and noticed the man next to me shaking the dew from his lily.  He went tap tap tap on his thing.  I looked the other way and the man to my left went tap tap tap, too.  So I thought it was a good idea and started tapping.  I have now tapped myself straight."

The doctor was puzzled and asked, "What in hell did you do before?"

Gesturing with two fists the man replied,

"I  W R U N G  it out"

My wonderfully funny Jr High School Health and Gym teacher defined it thusly: "Too much masturbation is defined as someone doing it more often than you do".

Tim

Quote from: Liam on September 12, 2007, 04:55:16 PM
If overnight you have symptoms that remain unchanged, this must be from a significant trauma. 

I guess significant trauma is like masturbation.  Define it as you will.  I guess a micro-trauma is significant if it triggers Peyronies Disease.

I would think if a man was paying enough attention to notice his penis developed a bend that he would know if he had my definition of a significant trauma.  He would remember the event.

The speed of the bend is directly related to the aggressiveness of the scaring process, not necessarily the degree of trauma.  I went from a slight natural upward curve to a dorsal curve to straight to right lateral and upward curve.  Each of these successive changes happened within days but had months of no noticeable progression in between the changes.

Ohhhhhh, I might add, without excessive masturbation ;). 

The order of events seems most frequently to be small nodules then bend.  If you go from nothing to plaque and bend overnight, I'm thinking something big happened.   But, who knows for sure.

Tim,

Times have changed.  That story is very funny.  But, if I said that to a student today, I would be fired and sued and probably arrested.

Thanks everyone for the sympathetic and informative responses.  It really means a lot.  (Liam, sadly I must concur with your take on the non-profit world.  And all those greedy, self-centered people probably take much better care of their penises than I've managed to!) 

I've been reading up more on the Child Boards, but I still have a couple questions regarding the treatment recommendations you guys gave.  I've got an appointment with my urologist tomorrow morning, so I really want to go in with the best understanding I can and have him prescribe me the best stuff.  So... 

Viagra -- Is the purpose of Viagra to induce erection for men whose Peyronies Disease makes this much more difficult? My Peyronies Disease has changed the shape and width of my erection in the affected area and reduced overall length, but as far as I can tell right now my Peyronies Disease hasn't physically affected my ability to achieve one.  I do experience insecurity because of my condition, thus hard-ons tend to get me a little depressed.  But I still get them spontaneously and even randomly without any spefific stimulation, probably as frequently as I did before the onset of my Peyronies Disease.  So is Viagra right for me?

Traction -- Intended to re-mold the penis, right?  Dr. Levine's clinical trial is still underway, right?  I've seen a lot of guys recommend this, but I guess the bending and stretching worries me, because... well, isn't that what probably caused my problem in the first place?  Are there any reports of traction worsening the problem?

VED -- Intended to stretch the penis length-wise, right?  I guess my worries about traction apply here, too.

And a related question -- Should I be trying to have more or fewer erections, for longer or shorter duration of time?  i.e. Should I be giving the old weenie a rest or a regular workout?  Obviously, the compulsive masturbation and rough sex is a bad idea, but what seems to be the right level of activity for a man with Peyronies Disease -- one erection per day?  What about ejaculation as opposed to simply having an erection?  Tim, you have advised regular erections because you say this helps combat progression, right? I guess I just wanted to double-check.  As I've said, I don't have a problem getting an erection (which remains normal in the area without plaque).  But my biggest fear is doing anything to make my Peyronies Disease worse. I still do get occasional pains in the plaque area, which makes me think it isn't totally static yet, and I usually get some pain there after an erection.  I've learned that I can still get by with the penis I've got now for the meantime, but I really don't want to risk doing anything to make my Peyronies Disease worse.

Given all this, does the PAV cocktail still seem like my best bet?  I was surprised to see that noone recommended the drugs I asked about trying (Potaba, Colchicine, Verapamil, Neprinol).  When I first saw my uroligist, he made it seem like my only options were Vitamin E, Potaba, or surgery.

Also, in reading more mens' experiences in the forum, I wonder if I may have had a "nodule" present a fairly long while (maybe even years) before the very sudden appearance of my curve-- which again, appeared overnight and hasn't changed much since in 6 months.  I'll have to read up more on these nodules.   

On a final note, my experience really makes me frustrated with the lack of sexual health education I received growing up.  Sure, "Use a condom to avoid STIs and unwanted pregnancy," that was covered --but nothing so specific as "Be kind to your tunica."  Had I known more about the anatomy of the penis and trauma that could lead to Peyronies Disease, I think I would have been a lot smarter and not dealt with depression in a way that ended up giving me something new to feel bad about.  I'll be sure to check out the advocacy/awareness/activism section soon.
     

Hector - I just wanted to thank you for asking all the questions I have had rolling thru my mind. I was told in 1984 I had Peyronies because of a lump I felt but had no curve or pain. I had no problen until about 2 years ago when I started to curve to the left. After 2 months it stabilized and now it curves upward with a 30 degree bend. I started a search for a URO who could help me and after 6 months and 3 URO's I found one who I like. But after reading everyone's posts about verapamil and ionto-whatever I am more confused than ever. I do not need Viagra - I have tried Neprinol, ACL, and Vit-E with no progress. I have massaged daily in the shower thinking the stimulation would help break down the plaque - should I try for more or fewer erections & massages ? I even have to wait 2 months to get into a program to start treatment !! I have started taking anti-depressants to deal with the depression, I am sensitive to every comment my wife makes, and I spend hours on the net looking for something "new". I guess what I am trying to say is I feel your pain. I did nothing to deserve this. I am not a sexual athlete, I do not like rough sex, and I am a health nut. I am in my late 50's but look like I am in my 30's. I used to be a confident heterosexual but I have been slammed to my knees with this. So I am like a sponge soaking up any and everything but nothing is working. I will keep you posted after 11/07 and start my treatment ( for which I have to drive 65 miles one way ) .  >:( Hascal.

Since your posts do not relate to the cause of Peyronies Disease, I posted my response in the "Open Questions" topic.

After a injury to my penis in a flaccid state...I have noticed a slight upward curve about a 1/2 inch below the glans.  I cannot feel any lumps, hard spots ,anything different in flaccid or erect state. No pain.  Can you always "feel" scar tissue with the disease?  Or can this be something else??

There has to be something to cause it to curve.  Get it checked.  How much curve?

Quote from: Liam on September 24, 2007, 09:33:33 PM
There has to be something to cause it to curve.  Get it checked.  How much curve?

Probably 30 degrees.  I am scheduled to see a uro but thought I would see if anyone here had any comments.  I just cant feel anything that feels like a lump or scar tissue.  This happened about two months ago and I started taking vitamin E a month ago just in case.  Now, after the initial injury there was some pain, felt "bruised"...but it went away.

Many of us have little or no palpable scar or abnormal feeling tissue (ie me). The key is for someone to recognize that your problem is real and it is not determined by whether or not they have the ability to "feel" something. If you have a new dent or area that has angulation (or both), then you have Peyronie's Disease. The lack of palpable scar is good - it means that you may have less to overcome to get better.

Tim

I believe you can have a lesion after an injury causing a curve without feeling it.  Glad your getting it checked.  My opinion is you can have an injury causing a curve without having Peyronies Disease.  Most others here disagree.  Regardless, penises don't curve without something making them curve.  

Good luck at the doc.  Let us know what he says.

Liam

"My opinion is you can have an injury causing a curve without having Peyronies Disease."

And that would be that other disease that causes deformation after injury, right? What was the name of that again?

Tim

ISS or scarring or wound or penile fracture are all candidates.  This is an old discussion and I admitted this was my opinion (maybe alone) and not the majority of the other members.

Most members who have posted an opinion on this feel that any curve of the penis that is not congenital is Peyronies Disease.

I base my opinion on traumatic injuries causing a curve and never changing afterward except for improvement in some.  This is opposed to no apparent injury, but a progressive increase in plaque until eventual stabilization.  They just seem different to me. 

Maybe you would be more comfortable if someone called them type 1 and type 2 Peyronies Disease.  Maybe you would call it mild vs. severe.  WhatEVerrrr :) .  There's some difference.

I hope tman's gets better! 

Thanks guys for your input.  This injury actually happened crossing a fence and my penis "rolled over" a fence spike.  I started researching this as soon as I saw that I had this issue.  I didnt have a curve for probably a couple of weeks after, of course I didnt have too many erections either because the skin on the top of my penis was so sore like you had rubbed your elbow against concrete or something.  I will let everyone know what the doc says, and in the mean time I am taking my vitamin e.  What about taking anti inflammatories?  Does anyone do that on a daily basis??

Thanks!

Yes, I take it for other reasons.  I think it may help.  ;)  How's that for vague.

You know, we do what we can.   :)

Read my House quote in the Light Side topic.  Fence spike  :o  HELLO!!!  :o ***O-U-C-H***   :o >:( :o

Is there a puncture or abrasion?  Is there a scar on the skin causing the curve?

Liam: "I base my opinion on traumatic injuries causing a curve and never changing afterward except for improvement in some.  This is opposed to no apparent injury, but a progressive increase in plaque until eventual stabilization.  They just seem different to me. "

They are different, IMHO. However, most urologists would simply call both of them "Peyronie's Disease", and be grateful that they were able to identify a "cause".

Tim

Tim,

We are in 100% agreement on that :)  And, they would offer the same treatment.

I know this might sound a very simplistic approach, but when I used to fly light aircraft, there was always a little meter which showed how many hours the engine had run so that it could be serviced at appropriate intervals.
Could it be that there is a correlation between erection hours and Peyronies Disease?
It is known that Priapism damages the erectile tissue, so what about the cumulative effect of lengthy, but otherwise normal erections and Peyronies Disease?
This could be more plausible than injury being the cause.
It might explain the large variation in distribution and age groups:  erections of short duration may be less harmful than those of the 'long haul'. Are we all victims of learning that the ' quickie' does not impress the ladies and have learned to pleasure them for hours?
It makes sense from an engineering point of view: prolonged stretching eventually wearing out the elasticity.
We could even invoke the Le Chatelier priniciple along the lines: if a system at equilibrium experiences a change in  pressure the equilibrium will shift in order to minimize that change. Admittedly, this might be a tenuous connection, but it could be that lengthy pressurisation may promote a force of resistance such as plaque build up.
Even if it were practical, it is too late for us to fit a timers to our units once Peyronies Disease has started. However, it might be that in future, all males are screened at say 3 - 5 year intervals to see if there are any markers present for developing Peyronies Disease. Action could then be taken to minimise the risk of Peyronies Disease taking hold and the current selection of drugs and supplements would probably work a lot better at this stage.
Regards,
Percival

My urologist speculated that the opposite was true. He thinks that older men and men that don't get as many robust erections for whatever reason are who he sees in his practice getting Peyronies Disease. He has me on half a Cialis every 3rd night and l-arginine to stimulate nocturnal erections. The cause is speculation until the medical community takes Peyronies Disease seriously enough to study it more.

I had the first symptoms of Peyronies Disease about 6 months prior to prostate surgery.  I noticed no change during this time.  I had two small palpable nodules, no curve, no real pain.  After the surgery and no real erections for a year, it is easier for me to find plaque than areas without plaque.  The plaque spread quickly with a vengeance.  I think a decrease in blood supply facilitated the rapid increase in plaque. 

I like the thinking by Percival, outside of the box and all.  In general, he describes a stressed system.  This may well be, at least, part of the problem.  I'm not sure about the number of hours being relevant, but it provokes thought.

Percival,

I to think the evidence is strong in the other direction.  In our resource library is an article on the increase of TFG-B! with reduced oxygenation due to reduced erections.  It is the old use it or lose it principal that is still very much preached by urologists.

You must remember that priapism has nothing to do with stretch.  Where as erections gorge the penis with oxygen rich blood, lengthy erections actually interfere with blood exchange and starve the tissue.  Oxygen starvation due to 6 hour erections (with no momentary break) starve the penis in short order just as no erections starve the penis in a slow but sure fashion.

Hawk
The point I was making was not that lots of erections might be bad for you, but that habitually holding really hard ones voluntarily for long periods might eventually lead to erectile tissue damage .
I thought of this when watching a wildlife programme: coitus amongst animals is generally a very brief affair (not that I watch beasts mating as a hobby you understand). To my knowledge, there is not an animal which matches man in sexual behavior - grinding away for hours in varying positions. Also, most animals do not have the same longevity as man. In comparison therefore, maybe we are expecting too much from the human penis considering the hammering it gets over such a long period of time! 
Someone on this forum has already said that young men should be told that the penis is not indestructible and they should learn ways to care of it. Frequent erections are of course important to maintain penile health. However, what I am suggesting is that continually striving to hold them rock hard for an hour or so to impress a lady might be a bad thing. Letting it rise and fall a few times would be better. You could even nip out any buy her a bunch of flowers during down time.
Regards
Percival

Thanks for the clarification Percival, I did misunderstand your point.  I think you pose a good question and I think the information is available to give strong indications for the correct answer.

Doctors specializing in sexual medicine maintain that oxygen deprivation does not begin prior to 4 hours and in fact that erections well over that period seldom result in damage.  When you are trained to self-inject for an erection they give a packet for the local ER in the event you ever have priapism.  The first line of treatment is at home.  You are instructed to take 4 sudafed if your erection lasts more than 2 1/2 hours and to start for the ER if it persists more than 3 1/2 hours.  If there is even a momentary break in the erection then it resets the clock.

Keep in mind this is the regimen for the express purpose of maintaining healthy penile tissue after a prostatectomy so I think it is sake to say that that a 2 hour erecting with no momentary break is not the least problem for penile tissue.  If you do that all day long with only a 2 minute break every 2 hours, the penis is re-flooded with fresh oxygenated blood.

When we see that the incidence of Peyronies Disease is in inverse proportion to the frequency of erection (as determined by age, prostatectomy, diabetes) it seems clear 17 yr olds have robust healthy penile tissue because of relatively frequent, relatively long erections, not in spite of them.  Any damage would likely manifest itself quickly not cumulatively over the years.

Here is more data that supports a role for TGF in causing Peyronie's Disease. My personal hunch is that those without a positive TGF finding were "burnt out" and done with the active scarring process. It would be important to document relapse or worsening later vis-a-vis TGF B-1 status.

Tim

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

AU Hassoba H.  El-Sakka A.  Lue T.
FA Hassoba, Howayda.  El-Sakka, Ahmed.  Lue, Tom.
IN Departments of Clinical Pathology, Suez Canal University, Egypt. TI Role of increased transforming growth factor beta protein
  expression in the pathogenesis of Peyronie's disease.
SO Egyptian Journal of Immunology/Egyptian Association of
  Immunologists.  12(1):1-8, 2005.
AB Transforming growth factor beta (TGF-beta) has been implicated in
  many chronic fibrotic conditions such as pulmonary and hepatic
  fibrosis. Inhibition of TGF-beta activity can prevent the
  development of chronic hepatitis and mesangial proliferative
  glomerulonephritis. We postulated that TGF-beta might play a role in
  the pathogenesis of Peyronie's disease (a localized connective
  tissue disorder that primarily affects the tunica albuginea and
  adjacent erectile tissue of the penis). Tissue from the tunica
  albuginea of thirty-five Peyronie's patients (study group) and from
  eight patients without Peyronie's disease who had undergone penile
  prosthesis surgery for organic impotence (control group) were
  subjected to histological study using Hart and Trichrome stains and
  Western blotting for the detection of TGF-beta protein expression.
  TGF-beta1 protein expression was detected in 30 patients (85.7%),
  while only 8 (22.8%) and 6 (17.1%) patients showed TGF-beta2 and
  TGF-beta3 protein expression, respectively. All tissue from
  Peyronie's patients showed a variety of histological changes of the
  tunica, ranging from chronic inflammatory cellular infiltration to
  complete calcification and ossification of the tissues. The most
  prominent changes observed were focal or diffused ellastosis,
  fenestration, and disorganization of the collagen bundles. One
  patient in the control group showed fibrosis of the tunica albuginea
  and protein expression of TGF-beta1 and TGF-beta2. This patient had
  undergone surgery for the revision of his prosthesis twice. However,
  the other seven patients showed normal histologic patterns of the
  tunica albuginea and no protein expression for TGF-beta1, TGF-beta2,
  or TGF-beta3. In conclusion, TGF-beta1 protein expression is
  significantly associated with Peyronie's disease and may be a direct
  cause for its development. This finding may be of help in the
  prevention and treatment of this disease.

Thanks, Tim. Keep up the good work! I'm sure it was the TGF-Beta being modified by my taking of Propecia that caused a suceptibility to Peyronies Disease. I think it was a sexual injury, but no doubt it was the hormones being modified that triggered it. I only wish my uro would have entertained the idea - maybe supported by such research - instead of dismissing it.

Well guys,,,here i go again...It's hit me again now for the 3rd time, i don't know whats going on this time i haven't done anything that i know of to bring this on...My first time was about 10 yrs ago which was really bad , twisted and bent like a donut,,then about 10 months ago i got another plaque recessed back in behind my pubic area, it hurt for awhile and has gotten a little smaller over the past few months, NOW, i went to a new URO this past friday and had a long over due annual checkup. He was a great doctor and i was very impressed that he was very active in peyronies research and he was impressed that i was involved with this forum...

When i was there everything seemed ok with me, [ my penis ] , i got some samples of viagra and levitra...Came home and took a half of a 20mg levitra so i could have sometime with the wife and i noticed that something was different with my penis, it just didn't look right...So thought i'd check it out the next time i took the pill again, and today i did....NOw i know what you all have described as the hour glass effect,,,but it's kinda different too..
I have this big bulge about half way up the shaft and above and below it's way smaller in girth and my penis seems shorter too....YOu know, i'm not scared this time,,i was able to have successful intercourse, but it did feel a little different.  I told the wife that i guess i was going to have to start using my VED as all of you have talked about and i need to start paying more attention to...

My penis really looked bad today, but at least i do have some feeling still...I think i will go back to see my URO and let him know whats happening.

Let me know what you all think, i do apprecieate your input.......kimo

Damn, Kimo, I'm so sorry to hear this. 

Perhaps now is the time to get your doc to give you a prescrip for Pentox.  Isn't that what people are recomending during the inflamatory stage?

Definitely talk to your doc asap to try to strike while the iron is hot so to speak.

Good luck, brother.

Nemo

H i Kimo,

I would see if your doc us willing to do an injection to make the penis hard. It is possible that you have a "bulge" in the tunica to account for the bulge that you see. It is also possible that you have some sort of trauma to the area and had some swelling in the soft tissue that lies *over* the tunica and, when hard, was more visible. That would definintely be worth evaluating.

Also, if doing the VED, I would absolutely start with the narrow one for remodeling straight and narrow, so to speak - as that might avoid placing stress on a potentially weak area of your tunica. I would at least do that pending further evaluation by your doc.

Tim

Kimo
Next time that you are at the uro ask for a Doppler with an injection of PGE1 and pay special attention to the corpa. Peyronies can cause shortning of the penis and in the copra scaring that will lead to severe ED problems.
My first uro did not tell me that shortning was because of the Peyronies. I learned the above the hard way. See my post in Peyronies Surgery.
Good Luck!! let us know how you are doing.
Jackp

Tim,,,Jack,,,,

I will follow your advise, i am already planning on making another appointment with my URO....Also, the VED that i have is a Osbon Esteem manual model with only one size tube and i really don't have the money to get another one....I will take it easy tho....

As far as i can remember there hasn't been any trauma as i haven't had much sex lately with the wifes health problems, so for me to have sex twice in week,,,well thats not the norm,,,dang.....

I will keep you all posted , but it will be a week or two before i can get an appt with my doc......

Thanks ,,,,,Kimo

WEll , i went to my URO today and we had a great talk about things, he examined me and said it didn't look very good.  I already had a new plaque bigger than ever before. It measured 6 cm long and 1cm wide the lenght of the shaft,,,i was bulged in the middle and narrowed below and above...and i have shortened some more.  He advised me to start using the VED and to continue using viagra to help stretch things and come back in 6 months for a followup....

He is also writting me a presc. for Topical verapamil as it has helped in the past, but of course no guarantee it will work this time and i know that....I WILL have more info about this tomorrow that is different , will explain later.

He said that it could get better,,,which we hoped for,,but it may get worse and at some point he said i will need a penile implant...My plaque is so big he was very supprised and concerned. He does surgery's for peyronies and is very experienced, i was very impressed with his knowledge.

For now just keep using it as best i can and see how it goes....Will post more later.......kimo

Hang in there Kimo. I will keep you in my thoughts and prayers.

Tim

Just to steer this thread back onto topic I throw out this little thought.

Healthy human tissue requires oxygen.  Without oxygen, human cells die.  With insufficient oxygen, those same cells malfunction.  We've been down this path before.  Rico used to point it out on a regular basis.

But, healthy human tissue also requires sufficient amounts of glucose.  Glucose is the body's energy source at the cellular level.  When cells are starved for glucose, they are in trouble.  And they may have enough glucose in ordinary situations, but they may not be able to get enough glucose when they are stressed by trauma.  And when you look at the number one reason cells might be starved for glucose, it turns out to be insulin resistance.  Insulin resistance interferes with the cell's normal ability to assimilate glucose.  In fact, I would characterize diabetes as a disease which bears similarity to a man lost on the ocean dying of dehydration, glucose all around, but none available for use (which is what happens when insulin simply stops working).  I believe that this is the real culprit behind Peyronies and a number of other confusing diseases and syndromes.  If traumatized cells are unable to metabolize glucose normally in a stressed state, those cells are threatened.  And when cells start dying and malfunctioning things like plaque and cancer occur.  And once the process starts, it is nearly impossible to reverse.  Even in the best of situations, healing cannot occur in dead or dying tissue.  Healing has to progress from the healthy tissue in.  This means that barring a dramatic immune response scenario, healing takes a LONG time.  Everybody here seems to be searching for a 'silver bullet' for Peyronies.  While I certainly would welcome such an innovation and I do think the chances for it happening are becoming greater, I also think that we can all make progress right now by attacking glucose resistance.  I know that this is an unpopular subject because it goes after the stuff we love to stuff in our mouths.  As a number of people have told me, "I would rather die than give up my (fill in the blank)."  Additionally, a lot of people either just can't afford the kind of dietary changes they need to make to implement this and others are trapped by their jobs and professions.  But I am convinced that this connection is real and that major changes are going to need to happen in our society to deal with the health care crisis that this connection is fueling.  - George

George999 - My Uro asked me if I was diabetic or had a family history of it when I went for a checkup. I think you're dead-on with that assumption - I don't think it's peyronie's = diabetes, but there might be something there to the lack of insulin contributing to the scarring. Type II, however, which is resistance to insulin rather than a lack of it, has been proven to be reversed and in some cases resolved through diet and exercise. I wonder if we have a cross-section of active and inactive people, here - it'd be interesting to see if the active ones respond better to treatment.

Interesting study...

http://www.ncbi.nlm.nih.gov/pubmed/17686962?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

How many of us are overweight? I'm not certain that a correlation can be made between obesity, elevated leptin and Peyronies Disease...afterall, we are not certain that tgf beta is truly pathogenic factor. This particular study was focused on a certain type of tissue fibrosis which may not necessarily translate, but certainly we keep seeing tgf beta and fibrosis linked together.

I would be curious to see a poll of the members here trying to determine if the majority of us are overweight based on BMI and if our obesity % is different than the national average.

For those of you who would like to know your BMI, here is a calculator...

http://www.nhlbisupport.com/bmi/

It is not a perfect tool but it is at least a measure of some sort. No matter what, there are numerous benefits to slimming down...this may just be one more that probably appeals to each of us if it could result in any slowing of this horrible process.

Hope everyone had a wonderful Christmas and best wishes for the new year!

roadblock

roadblock,  The more one pours through the research, the more you find these ominous linkages.  They are everywhere.  For example, I was just reading yesterday about a phenomenal substance found in the body that serves to break down fibrosis.  What causes it to be depressed?  Why ... elevated levels of insulin!  Duh ... It all becomes a huge circular process.  Excessive body weight is an incubator for fibrotic disease in a thousand different subtle ways.  So, in our society today we see growing BMIs and growing numbers of people afflicted with fibrotic diseases.  When you look at the third world, you see that these are just the type of diseases that are following our western style fast food restaurants and dietary habits into countries that never knew these problems before.  Is there a connection?  Count on it!

At the core of fibrotic diseases, one finds AGEs.  These are proteins that are part of the body's extra-cellular matrix that have been modified by glycation (the joining of a protein with glucose).  These proteins then get 'stuck together' in a fibrotic mass AND they generate copious amounts of TGF-beta-1 AND free radicals that power the whole process forward and in turn, create more AGEs.  This is an attempt at a very over simplified description of the fibrotic process, but it nonetheless, hopefully, gives a picture of how TGF-beta-1 is involved in that process.  - George

Hard to know where obesity fits in. I got Peyronies Disease when my body fat was measured (using caliper estimates from four spots) at 9%. My aerobic capacity was at the 99.5th percentile for my age (30, I think I was). Yet I got Peyronies during that time of my life. Certainly, though, now it is getting worse, and I am now long away from 9% body fat!

To see how much those of us who are overweight, look at this website by the CDC. If you simply watch the map (you can also click on a link to watch the PowerPoint presentation), you will see a 21 year record of obesity trends in America. It is shocking, and I will remind you that the projections are now saying that 30-50% of kids born in the year 2000 will develop diabetes.

http://www.cdc.gov/nccdphp/dnpa/obesity/trend/maps/index.htm

The changes in diet and to an extent, activity, are now coming back to haunt us. Interestingly, our free market system promotes such changes (cartels of mega-monster food production giants like McDonalds, with vertical integration of basics, processing, shipping and presentation in the market) such that our diet is changing all the time - for the worse.

We are working harder and making less money, and that translates into less time to cook good foods (or to go to a local market to buy fresh produce that is not covered in chemicals).

The changes are not overhyped - look at the damn map if you doubt what I am saying! We are going fast down hill in our health, and seem powerless to change it - except on a personal level. The lowest socio-economic status groups are suffering worst, for a lack of access to good food, better information, or the time to take care of themselves.

So, I continue to make small changes and to try the good advice I have gotten here from George, Rico, etc about the value of exercise and good diet. Although a nagging voice reminds me that when I ate best and was the most fit, this disease started, I also know that my overall health will benefit, and I may slow down the progress even if I do not reverse it.

Tim

Quote from: Tim468 on December 28, 2007, 09:50:56 PMHard to know where obesity fits in. I got Peyronies Disease when my body fat was measured (using caliper estimates from four spots) at 9%. My aerobic capacity was at the 99.5th percentile for my age (30, I think I was). Yet I got Peyronies during that time of my life.

Tim, I think there IS an answer to this conundrum.  And that answer has to do with the concept that Peyronies at its root is glucose driven.  And what one has to realize is that a person can be VERY fit and STILL have high DYNAMIC glucose levels.  Traditional blood sugar tests measure only fasting serum glucose, NOT dynamic serum glucose OR insulin levels.  Some people, genetically, just have very robust insulin producing capacity, which means that 1) they are subject to damage inflicted by humongous spikes in insulin, 2) they are capable of withstanding wide swings in blood sugar levels which 3) will be pretty much guaranteed to have returned to grossly normal levels at the point of a traditional fasting test.  I would further suggest that this untested dynamic factor is just one reason that traditional tests of everything from serum glucose to cholesterol are not the be all and end all in terms of predicting the future.  Additionally, I find it interesting that there are some pretty arbitrary guidelines for establishing the presence of metabolic syndrome.  Yet it is also clear to me that metabolic syndrome doesn't start the second, minute, hour, day, week that some test reveals some number going over an arbitrary threshold.  Certainly, by that point in time, the process is long established and loaded with forward momentum, which makes it even more difficult to deal with.  But we are saddled with a medical system that is basically attuned to treating symptoms rather than promoting prevention, and that is why we are stuck with the mess we are all stuck with today.  And, as you very eloquently point out, our whole system as a society, and increasingly as a world, is geared to sending us hogtied down that road.  Our food supply is tailored to it, our job constraints are tailored to it, our medical system is tailored to it.  It takes a powerful lot of determination to try to buck that trend.  But I am convinced that even little steps in that direction will bring huge rewards.  They already have for me, I've tasted of it, and thats why I'm not stopping here.  - George

Like Tim, I was a fit machine when I got Peyronies Disease, however, in my case I had a prostatectomy which is a known factor.  However (again),  my Peyronies Disease was not until 9 months after my prostatectomy and Dr. Mulhall told me that was too long to be causative factor.

When I got Peyronies Disease I was on a nutritional diet to fight cancer and had been on one for well over a year.  Very low in on glycemic index, many small meals, etc, etc, etc.  You would be hard pressed to recommend a diet component for glucose control and anti-inflammation I did not incorporate.  I think it is almost impractical to think that 1% of the population would be more disciplined or more informed than I was.  I certainly cannot imagine I was insulin resistant.  I was also supplementing with ALC 3.5 grams per day, mixed Vit E, high doses of C, alpha lipoic acid, high omega 3 fats, and much more.

Hawk, I certainly have to admit that I don't have an answer in your case.  For sure you were doing everything right.  I would say that it is well known that smoking is the primary cause of lung cancer.  But some people who never smoke DO get lung cancer.  However, we now know that exposure to second hand smoke CAN cause lung cancer.  But a few people who have never really been exposed to even second hand smoke get lung cancer.  And to top that off, some people who are chain smokers from their teens remain healthy to 100.  So who knows.  But the occasional exception does not invalidate the rule.  We ALL have glucose in our bodies, even if it is a normal or even less than normal levels.  And that glucose "wants" to inappropriately bind to proteins causing fibrosis.  Fortunately, we also have systems in our bodies that work to prevent that nasty phenomenon.  But a multitude of things can go awry.  The most common by far is an environment with excessive glucose.  We KNOW that this is a risk factor because diabetes demonstrates that it is.  But there have to also be less understood factors like, perhaps, the failure of the body to produce an adequate amount of L-Carnosine, since L-Carnosine is one of the primary gate keepers in preventing glycation.  A deficiency of L-Carnosine, even in a normal glucose environment could conceivably cause glycation and localized fibrosis.  On the other hand, I am sure that there are those who can have a terrible diet and never exercise and still remain fit and healthy due to spectacular genetics and never get Peyronies or any other fibrosis disease.  But again, there is more than enough evidence, in my opinion, to implicate the glycation process, and there are enough possible explanations as to why there can be various alternative scenarios which precipitate fibrosis or even preclude it.  But the potential solution is the same.

Obviously, if the diet is already covered, and yours sounds good to me, one has to look at the potential benefit of supplementation and the VED and all the rest.  A few days ago, on another thread, Tim asked me about my diet.  I shared it simply in answer to his question.  I did not intend it to be THE model diet.  I myself am continuously adjusting my own diet.  I am right now faced with the realization that I need to take a second look at cheese.  Cheese=Saturated Fat.  There is simply no way around that, and if I look objectively at my current diet for ways to improve, cheese will have to go.  I think it is like that with all of us.  On the other hand, we all live in an environment of different peripheral health issues, meaning that what is good for one may not be good for another.  I am constantly looking for healthy things to add to my diet and less than healthy things that I really would be better off without.

The same is true of supplements.  I am constantly asking myself "Why am I taking this supplement?".  So I am constantly quiting the stuff that I no longer have a valid reason for taking whether that is because the problem has gone away or perhaps new research indicating that the stuff is really not that good after all or even moving on to something more promising.  But without understanding as much as possible about the underlying process and pathology, we are traveling without a compass or a map.  We have to base our decisions on the research and when things don't seem to make sense, we have to reexamine our logic.  I think that the whole inflammation factor is a valuable key to dealing with Peyronies.  But then you discover that underlying inflammation is oxidation, nitration and glycation.  One of the best natural anti-inflammatories out there as far as I am concerned is Mangosteen.  But then you find out that Mangosteen contains Xanthones.  And one of those Xanthones is Garcinol.  And Garcinol just happens to be a potent anti-glycant.  The bottom line is that if you strangle the oxidation, nitration, and glycation, the inflammation goes away.  There is just a lot of useful knowledge in all of this, even for people like yourself who have had the diet and exercise part down from the beginning.  - George

George, I think that you are on to something, but I do not think that you are onto THE thing (well, maybe you are after reading your post to Hawk).

When I got Peyronie's I was not just fit, but I ate amazingly healthy foods (more or less). Certainly my fasting glucose was low, and I did not show much evidence of hyperglycemia (I cannot recall if I looked for a hemoglobin A1C to measure glycation).

So, for me, it doesn't seem likely that I was hyperglycemic than. I was off the grid a t a hippie college in Washington state, eating Miso soup for lunch and sprouts for dinner.

Tim

Tim, I am not sure if we will even live long enough to be onto "THE thing", but I do believe we ARE getting closer.  I think that understanding the role of TGF-beta-1 was important and helpful, for example.  Each new step of understanding brings us a little closer, closes a few more gaps, and opens more possibilities for POTENTIAL intervention.  Will any of those potential interventions be effective?  In all honesty, I don't know.  But I think that even the most effective intervention around today would take a substantial amount of time to demonstrate its effectiveness which really throws a wrench into the try it and observe the results type of approach.  Therefore, I choose to wrestle with the underlying theories and choose my poisons based on those indicators.  And at this point that is serving me well.  Both on the mind and body side, it is only getting better for me.  So are there more revelations coming that pull back additional layers?  Of that I have no doubt, and I look forward to the day, but for now I have to work with what I have and I am intent on sharing that knowledge as well.  I am also hopeful that you all will continue to punch those ideas around and not be afraid to critique them ruthlessly.  I would be the first to admit that I have been dead wrong before on multiple occasions and on many occasions, while not necessarily completely wrong, far off the track.  And I thank all of you who have been gracious enough to set me straight on those occasions, I suspect sometimes without even realizing it.  And I always try to make an effort to go back and modify my prior posts at times to make sure that no one groks them with Google only to be sent on a snipe hunt.  In any case, Tim, I appreciate you so much, and Hawk, and all of the rest of you and wish you the very best in this New Year ahead.  Hopefully it will be a year in which we all can cut new ground, one way or another in regards to eliminating this debilitating disease!  The very best to you all.  - George

Since Carnosine has an important role in preventing glucose from binding to the protein on the surface of our cells, a deficiency in Carnosine could theoretically lead to glycation and fibrosis even in the absence of hyperglycemia.  Dietary sources of Carnosine come almost entirely from meats.  Thus a diet unusually low in meat products (all meat, including fish), without external Carnosine supplementation, could provoke fibrosis via this route.  It has been speculated, but never proven, that vegetarians and vegans have chronic Carnosine deficiencies.  What IS known is that typical Carnosine levels vary widely amongst the general population and since Carnosine is literally the teflon that protects cellular protein, one has to wonder as to the adverse effects this might cause.  There is a delicate Glucose v Carnosine balance here and since both of these factors can vary widely in a dynamic fashion, that leaves lots of room for things to go wrong in different ways.  What is also known is that Carnosine is literally Beta-Alanine + Histodine, BUT it is also known that supplementing with Beta-Alanine + Histodine DOES NOT give the positive Carnosine benefits that supplementing with Carnosine itself does.  Since the body manufactures Carnosine from  Beta-Alanine + Histodine, the reason for this strange thing is a mystery.  But looked at critically, it could potentially answer questions as to why some of us get sick and others don't. - George

I know there is nothing new about the strong suspicion that Peyronies Disease is possibly an autoimmune disorder but this is the first I have seen this study.


The Study: http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HM78DC-R&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=740aa186b244baa0a5a2554e784b4261

This study shows a positive association for the HLA class II antigen HLA-DQ5 with Peyronie's disease, suggesting that HLA-DQ5 is a risk factor for Peyronie's disease and implying an autoimmune etiology for this disorder.

I thought I posted that one before Hawk. At any rate, the association is extremely weak - not nearly as strong as some other problems with HLA associations.

Tim

While I absolutely DO NOT believe that Peyronies is a RESULT of an auto-immune response, I would not be surprised if the kind of pathology going on in a typical Peyronies setting would kick up an auto-immune response.  After all, you have a mass of terribly abnormal tissue kicking out TGF-beta-1, scads of free radicals and who knows what all else in terms of abnormal chemical and/or neurological signalling.  As a result, you could well end up with an auto-immune response to top that all off.  A big part of the whole question in these circular situations becomes the chicken and the egg factor of which comes first.  I am absolutely convinced that this whole phenomenon is triggered initially by the inappropriate binding of glucose and protein.  Whether that is a result of excessive glucose or insufficient L-Carnosine may vary from one individual to the next, but this whole dynamic is so delicate that once the ratio of glucose to L-Carnosine (and what ever other protective agents might be involved) reaches a tipping point, the whole house of cards comes crashing down with even the slightest trauma and fibrosis sets in.  This all happens at the molecular level and results in all sorts of abnormal phenomena at higher levels, any one of which can be identified as potentially "the problem".  But my perception is that the real problem is taking place far below anywhere that anyone seems to be looking.

To further visualize this, imagine cells covered with teflon coated velcro like protein that normally allows them to cling to one another in a very flexible, at times elastic fashion.  Then imagine injecting superglue into that velcro, as in the case of too much environmental glucose, or alternatively an insufficient supply of teflon.  The result is like injecting superglue into the velcro.  Thats what happens with Peyronies.  And at that point, unless you can 1) dissolve the superglue, or 2) Cause the cell(s) in question to shed and replace the velcro, you are stuck with this mess.  Thats a simplified model of the underlying problem.

- George

Quote from: Tim468 on January 03, 2008, 09:07:17 AM
I thought I posted that one before Hawk. At any rate, the association is extremely weak - not nearly as strong as some other problems with HLA associations.

Tim

Actually, you are correct Tim.  A search reveals you did post that.  I either somehow missed it, or more likely it was a matter of not not giving it enough time to grasp it and therefore not retaining it.

George,

When I combine searches for "HLA" and "advanced glycation end product", I only get six hits in Ovid and PubMed, none of which are relevant. I am not sure I see a way for AGE products to change HLA typing.

Tim

I sometimes wonder why there's so little discussion of the obvious genetic factor. The link between Peyronie's and Dupuytren's is well known. And the genetic basis of Dupuytren's, originating in northern Europe and apparently spread by the Vikings, is also documented. I read, years ago, that in England Dupuytren's used to be known as "Vikings' disease".  Shouldn't we be studying Viking relics, looking for straightening devices carved out of walrus tusks?

 

Tim, Please understand, I am not claiming that there is any shred of scientific data supporting this, I am only suggesting that I can see how it MIGHT happen.  Certainly I have not identified any specific pathway for that, rather I just am convinced that these AGE entities are capable of all kinds of weird side effects that are not currently understood or identified and that an auto-immune response MIGHT be one of those.  But I CERTAINLY don't believe that Peyronies is initiated by a random autoimmune syndrome.  At least not at this point.  Of course, I reserve the right to change my mind if convincing evidence emerges to the contrary ;).  After all, this whole understanding of glycation and AGEes is just now emerging, and there is not a whole lot of research on it at this point, but it is being intensely studied in relation to diabetes and I suspect that by the end of 2008 we will know a lot more.  As for the auto-immune aspect, it would seem that it would be rather simple to give a Peyronies sufferer a course of immune system modulating treatments and observe the response.  I suspect they would have literally no effect one way or the other on the Peyronies symptoms.  And of course, all of this HLA stuff gets into the area of genetics, and I believe that genes and gene expression are actually far more dynamic than most people think.  I believe that one can literally CHANGE their genes in a positive way through targeted environmental vectors.  Perhaps only a few of them at this point, of course, and not easily.  Alternatively, I believe that pathogens can cause detrimental changes in our genes, but that is probably more widely accepted.  - George

J,

The genetic basis is often unclear in disease. Not knowing what to do with the information is a second roadblock to using the information. We may have genetic tendencies such as abnormal wound healing, but the central questions is "Why right there??" I would not mind very much having to deal with a contracture of, say, the forearm skin. A tightening up of the skin under my neck in my fifties would be timely, not bothersome!

George, the thing I am trying to say is that HLA or autoimmune disease is hard enough to understand on my best days, but it can certainly be modified by environmental factors. The low R-value of the study (which correlates more tightly in a linkage the higher it is) suggested to (I cannot recall) either the authors, or editorial reviewers, that there would likely NOT be an answer in immune modulation. There have been sporadic reports over the years of attempting to do just that - foremost is oral or injected steroids - without the desired effects.

The R-value was something like 1.9 or 3.0, whereas other more tightly linked autoimmune diseases have Rvalues of, say 25.

Tim

j, I think another problem is trying to separate genetics from societally typical environmental factors or even familialy typical environmental factors.  These kinds of things can really cloud the whole picture when given a genetically "pure" culture like the Vikings.  How do you discount that possibility that there might have been something unique about their diet that contributed to the issue, for example.  One could go on from there.  And if you do find a link, what do you do with it?  I think the answer is that you do the same thing with it as you would if you didn't have that information in the first place, so why even go there?  The challenge is not to identify genetic weaknesses, we know those are there, the challenge is the formulate a response to those genetic weaknesses.  Oh, I know, there are those suggesting that such knowledge would open the door to large scale genetic engineering as in "stick a corrective measure into a vector (such as a virus) and fix the problem, but I am not sure this is something that is going to happen very soon for Peyronies.  So perhaps for some things it makes sense, but not for Peyronies in my mind.  Those are my thoughts babblings on the subject.  - George

I'm a software engineer. When faced with a software bug, productive effort focuses on identifying the root cause - the exact, specific error in the code.  Attempts to correct a problem without really understanding it are called "hacking" and and typically introduce new problems while masking old ones.   Under pressure of time, the temptation to start "hacking" in hopes of making the bug go away is often irresistable; but the top guns are the guys who ignore the noise and go deep right from the start.

I am not saying we shouldn't try to "hack" Peyronie's disease because obviously any partial relief is a win; but the genetic factor is an elephant in the room.

j, The human genome is extremely complicated.  Identifying THE root cause is extremely unlikely.  It is far more likely that there are multiple genetic weaknesses which might contribute to susceptibility to Peyronies either individually or in combination.  It is also extremely likely that a person with zero of these genetic weaknesses might be very susceptible to Peyronies in a given environment.  I certainly have no problem discussing possible genetic aspects on this forum.  But you are going to have to come up with far more than what you have so far to wring anything useful from that aspect, and don't get me wrong, I am all ears.  And certainly, the more ground we cover, the more opportunities we will find, so if genetics turns you on, go for it.  - George

There's nothing you or I could do with this information except use it to condition our expectations.  Speaking for myself, I've accepted that I have a genetic anomaly, which reduces the chances of success from something like diet or supplements. Yes, there could be all sorts of interactions with environmental factors, but the bottom line is, I have a malfunctioning gene and I can't change that.

Genes code for proteins.  As the genetic basis of other diseases have been unravelled, researchers have been able to identify the proteins in question and build a model of what's really going wrong, starting at the beginning of the chain - a big step towards a treatment.   

I guess what I am saying is that I'm mostly unimpressed by the Peyronie's research I've seen to date, as it isn't targeting the root cause. I'm not aware of any research into the genetics of Dupuytren's/Peyronie's, although it could certainly be happening. Instead we have treatments based on hunches and guesswork, and none are panning out. This is what I call "hacking" and one of the bad things about hacking is that it diverts energy and resources from the slow, difficult but ultimately more productive work of finding the real problem.

If, starting 10 years ago, all the money that's been blown on unproductive treatments - verapamil, iontophoresis, crude surgical corrections, vitamin E and "followup" office visits, pentox, the whole list - had been directed to serious work on the genetics, we might be in a better place today. 

This is just a rant - I don't have a solution.  It's the way our system works, or doesn't.  Maybe in a perfect world, if I contacted a urologist about Peyronie's, he'd be prepared to say "sorry, we don't have a solution for you at this time. Instead we're suggesting you contribute to an ongoing research project...."  Instead, you follow the White Rabbit down the hole and start spending money on office visits and Transdermal Verapamil - or get loaded on a conveyor belt to surgery...

I think part of the problem for not spending the $$$ on research into the root cause is all these missconceptions and false statistics that one keeps hearing from Physicians and Urologist all over the place. The idea that Peyronies Disease effects less than 1% of the male population, that 1/3 to 1/2 get better without treatment, and that it is not life-threatening and therefore not important.

I think once more studies and data is available on the rate of males effected, and how in most cases Peyronies Disease does not get better on its own, not even with treatment, and the effects it has on couples and families, then we may see more and hopefully better research.

Actually if the drug companies find out the real percentage of men effected and the potential $$$ to be made then we'll get somewhere.

sorry ..that was just my rant  :)

Pal

the more we will learn about Peyronies.  That's the real secret of moving this thing forward.  Certain types of fibrosis are getting big money these days.  Fibrosis of the kidneys, liver, and lungs for example.  And the more we are learning about those, the more we are seeing how much they have in common.  So we can very likely take that information and apply it to both Peyronies and Dupuytren's NOW without having to wait forever for Peyronies research.  That is where the goldmine of data is that can help us move forward right now.  - George

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. 

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

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

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 SciencesChronic 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 (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 NeurochemistryThe 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 (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 InstituteIn 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 (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 CenterThis 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 (http://www.vanderbilt.edu/vicb/Articles/LensSummer2005/ThinkingOutsideCell.htm)

Quote from: Case Western Reserve University Department of BiochemistryThe 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 (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 SciencesRAGE, 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 (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 ResearchAnother 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 (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 (http://209.209.34.25/webdocs/Glycation%20Page/Glycation%20Page.htm)
And: http://mbceo.com/science/more_information.php?c=Glycation (http://http://mbceo.com/science/more_information.php?c=Glycation)

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?

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.

>>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

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?

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

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.

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

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."

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"

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.

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.

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

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.

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

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.

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

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

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

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.

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?

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

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?

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.

All men have sex which includes stimulation of the penis.  All men have routine stimulation by someones hand.  Over 90% never get Peyronies Disease.

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!

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

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.

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

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

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: HawkPeyronies 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. 

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

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.

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

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.

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

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?

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

Profibrotic Role of Myostatin in Peyronie's Disease (http://www3.interscience.wiley.com/journal/120126337/abstract?CRETRY=1&SRETRY=0)

Quote from: The Journal of Sexual MedicineResults. 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

what does this mean george999

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

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

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

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.

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.

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

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

I read recently where there seems to be a correlation between men with Peyronie's Disease and being on high blood pressure medication. The logic seems to be that a side effect of many blood pressure meds is that they can cause a light amount of ED or at least erections that were "not quite as firm" as before. Still fully functional but slightly weaker. Same thing happens as many of us get older. Erections are still firm enough for sex, and many of us don't want to admit that just maybe we do have a slight amount of ED. This really opens up the whole definition of what really is ED or even the onset of ED.

Anyway...   The belief is that with a slightly weaker erection (whether due to aging or due to blood pressure meds), that this makes one more susceptible to trauma to the tunica and therefore triggering the mechanism which causes Peyronie's. I was just curious if anyone has seen any similar information on this? Maybe we need to get the word out to those on high BP meds.

BP meds work in a range of different ways.  The most risky in terms of Peyronies are the beta-blockers.  This is because the tend to reduce bloodflow to certain tissues, including the TA.  This is for the purpose of reducing the load on the heart as it pumps.  They are especially useful in treating heart failure.  However they are also widely used as a BP med.

Then there are the inexpensive and popular "water pill" thiazide type drugs, calcium channel blockers and numerous other less widely known types.  These may have some degenerative effects on penile health.  Ironically, Verapamil is actually a calcium channel blocker.

But there are also BP drugs that probably would be protective in terms of Peyronies.  These would be the ACE inhibitors which block angiotenson converting enzyme (which is extremely inflammatory), and the ARB's, some of which are actually anti-fibrotic to boot.  I personally like Cozaar.  Mycardis is another good choice.

AND, there are new emerging BP drugs that are even more powerfully anti-fibrotic.  But these are not yet widely available UNLESS you happen to be severely diabetic.

  - George

I *think* what George is saying is that the comments about arthritis and Peyronies are sort of right for the wrong reasons!  ;)

I guess I agree with that. Since they did not go on to talk about molecular mechanisms, I think it is more of "even a blind pig finds an acorn sometimes".

Tim

What I meant was that both Peyronies and Arthritis are caused by degenerative changes to collagen and elastin in the affected tissues.  I don't know how I can put it in more simple terms.  That process lies at the root of most human diseases.  And we are approaching a point where that process can be targeted directly which can avoid a lot of the complexity involved in attacking those diseases as a higher level.  - George

I would say, more cautiously, that MAY be true. There may be yet smaller details that make the processes quite different we are unaware of.

The thing that makes me curious is this: Why my penis? Why not my joints, or my eyes? Avoiding the occasional feelings of "Why me?", I do wonder why my penis?

Tim

Tim,
I agree with you. While both may be caused by degenerative changes, I don't have arthritis but yet I did contract Peyroines. And yes....... why my penis!

I also ponder why is it that the curve is most often upwards. If it truly is a degenrative cause, then why isn't the result more random......    curves of random directions. There are documented cases where curves are more often upward, and then less often left or right.   Why?

Quote from: lwillisjr on August 27, 2008, 05:26:22 PM
Tim,
I agree with you. While both may be caused by degenerative changes, I don't have arthritis but yet I did contract Peyroines. And yes....... why my penis!

I also ponder why is it that the curve is most often upwards. If it truly is a degenrative cause, then why isn't the result more random......    curves of random directions. There are documented cases where curves are more often upward, and then less often left or right.   Why?

Becuse that is where the plaque more frequently forms  ;D

Reminds me of the joke: Do you know why when geese fly south bucking strong winds for hour after hour in a structured "V" formation, that the one side of the "V" is almost always longer than the other side?

Answer:After extensive studies, scientists have discovered that there are more geese on that side.  ;D

/

sgtnick,  Vasotec is an ACE inhibitor.  ACE inhibitor's are REALLY GOOD blood pressure meds.  They help to lower inflammation and thus are probably helpful for Peyronies.  The only better BP drugs are the ARB's I listed below, but they are still on patent although Cozaar is VERY close to coming off patent.  Thus they tend to be more expensive than the ACE inhibitors.  But Cozaar DOES have low level anti-TGF-beta-1 activity which would be synergistic with the Pentoxifylline.  But that would be something you would have to discuss with your doctor.  So glad to here your Peyronies seems to be responding.  Just having it not get worse is a blessing in and of itself.  - George

Why do you take the 50 mg of Trazadone?  If it is solely for night-time erections, I think it may be double the dose you need.  I would at least try a half dose for a week and see.

Ovarian cysts can be referred to as small sacs filled with fluids that get developed in ovaries of a woman. Most of the cysts do not cause any harm. However, some of them might cause problems like bleeding, rupturing, or pain. One of the ways of getting rid of ovarian cysts is surgery.

In ovaries of any of the women falling in the childbearing age group, that who aren't on pills, there are some cystic structures, continuously coming as well as going. These are essential to have the egg developed and released thereafter. As they form a part of general ovarian function, 'physiological' is the term given to them.
The cystic structures which develop in ovary and which aren't part of ovulation cycle are called 'pathological ovarian cysts'. These growths can also be termed as 'tumors'. Tumors can be divided in to 2 categories: malignant, i.e. cancer or benign. Pathological ovarian cysts consist of various types. Certain cysts contain mucous, whereas some contain old blood. These kinds of cysts are common in young women who bear an array of the tissues in a disorderly manner. These tissues are usually found in fat, hair, bone, teeth, or thyroid gland. The biggest drawback of pathological cysts is that there is no regression on their part. The accumulation of fluid can take place tremendously. Moreover, as the cyst is filled with fluid, its growth can take place rapidly. This enlargement might take a few weeks or months.

For more information Ovarian Cyst A to Z (http://www.ovariancystatoz.com)

darren123:

Ovarian cysts???? What in the world does these have to do with Peyronies Disease? You must have gotten on the wrong forum somehow. I think you should rethink what you are doing.

Old Man

P.S: Read sgtnick's post in the On The Light Side topic.

Quote from: George999 on August 27, 2008, 01:04:26 AM
What I meant was that both Peyronies and Arthritis are caused by degenerative changes to collagen and elastin in the affected tissues.  I don't know how I can put it in more simple terms.  That process lies at the root of most human diseases.  And we are approaching a point where that process can be targeted directly which can avoid a lot of the complexity involved in attacking those diseases as a higher level.  - George

It would be interesting to see how many people with peyronies have the HLA b27 gene.

In fact... I see this:

The Genetic and Bacteriological Aspects of Peyronie's Disease .
A significant association between Peyronie's disease and HLA-B27 was found (p = 0.02).

http://linkinghub.elsevier.com/retrieve/pii/S002253470165362X

I have found a few other studies suggesting a weak association. Of course there may be several causes of peyronies or more precisely  the sorts of connective tissue changes that lend to peyronies may be caused by multiple means.

If you really want to get interested in the possible genetic link, check out "epigenetics".  It just so happens that our genes don't actually program us any where near 100%, because those genes can be turned on and off, thus either making us sick, or, alternatively, MAKING US WELL  ;D .  And your lifestyle and what you eat can turn them on and off.  Hello!  - George

I have the HLA B27 marker. However, Peyronies was brought on by a bend during sex. Possibly without the genetic marker I would have simply healed. Who knows!

George-  How is progress with your anti-glycation lifestyle?  Are you following any specific book or diet?.

Quote from: hornman on September 02, 2008, 03:12:02 PM
George-  How is progress with your anti-glycation lifestyle?  Are you following any specific book or diet?.

Well, I am continuing to pursue it, although not nearly as vigorously as I would like.  The diet I have down pretty well.  Lots of fruit in the morning, veggies at lunch, nuts for snacks, and a little variety for supper.  With no refined carbs or heavy starches.  It has resulted in really great weight control and, in many ways, excellent health.  Where I am really letting things slip is on the exercise side.  I should be getting more.  But my work really keeps me active and I do a lot of walking, albeit not on any regular schedule.  But I really wish to get back to the treadmill.  I also have an elliptical at my disposal now and would like to make better use of that.  But lately I have been fighting a super tight schedule and working six days a week which is really sapping my energy.  I never really have followed a formal diet but I draw a lot on the "YOU: On a Diet" book by Oz and Roizen.  It has been really helpful to be on the Pentox as well.  Sometimes I regret not have started using it sooner.  I am definitely seeing benefit from it.  I am also back on most of the supplements I was previously taking.  - George

Thanks for your reply George.  I was at the library checking out some of the various healthy diet books for controlling diabetes, hypoglycemia, etc.  One recommended low carbs.  One recommended low protein and fat.  It seemed that they all conflicted.  I will check out the Oz book.  Thanks.

The problem with most diets is that they tend to demonize certain types of food such as carbs or fat.  The reality is that there are good carbs and bad carbs, good fats and bad fats, good protein and bad protein.  If you know which is which, it can result in awesome changes in your weight and health.  The other diets just don't work over the long term.  - George

Guys, I didn't know where to post this so ...

I just found a fascinating article on a Propecia "Victims" forum regarding testosterone replacement and the possible benifit it might hold for Peyronies Disease sufferers.  The doctors interviewed (one is Dr. Irwin Goldstein) feel that tissue fibrosis, which causes some degree of venous leakage, is possibly reversible through androgen therapy ... in other words getting the hormones in balance can lead to reversal of tissue damage.

I stumbled across this because I feel Propecia is what started my testosterone issues several years ago, and I'm even inclined to believe it contributed to my Peyronies Disease (I'm not the first to suggest this androgen/tissue relationship - there appears to be some science to back it up).  In fact, that's why it's discussed on the Propecia forum - several cases of Peyronies Disease seem to have a mysterious relation to Propecia usage.

I'm visiting Dr. Romeo Mariano in Monterey, CA next month to try to once and for all address my hormone issues.  He's considered one of the nation's foremost experts on male hormone treatment.  Unbelievably, just like with Peyronies Disease, most doctors (even some endocrinologists) either don't know anything about hormones or try to convince you your low test results aren't really the problem ... it's very frustrating.

Man, if Testosterone replacement also helped reverse any Peyronies Disease damage I have, that would be a real Godsend and I'd feel like the Universe was finally throwing me a bone!

Eisenhower

http://www.propeciahelp.com/forum/viewtopic.php?t=346

Nemo,

I am 100 percent behind you in that belief. I was on propecia for a little less than two weeks, and in that time I developed Peyronies Disease. It was not a coincidence, and I think it's clear that since TGF-B is involved in both Peyronies Disease and the mechanism for hair loss there has to be some sort of relationship.

Keep us updated on your testosterone test.

Nemo
Testesterone Replacement (TRT) will not stop or help Peyronies.
I have been on TRT even before my Peyronies started in 1995. Still on the T shots today.
My first uro had me on gels for years that did little to no good. Changed doctors and started shots, temporary boost but 300mg every three weeks was not enough for me. Could not get him go give me enough to bring my level up to even mid range, It stayed at or just below "normal".
Last year I was talking with my Primary Care Physician (PCP) and he said he could help me. He did the blood work and I was 120 which was way below normal of 250. He started me out at 300mg every 10 days and I started to feel a lot better. May he ran the blood work again and I was 426 with the top of the range being 1100. He increased my shots to 400MG every 10 days.
I am feeling much better. I do not think I would have survived the last hospital stay of 9 days if I had been weak.
All this to say that in me TRT has not helped Peyronies, ED, Venous Leakage and Corporal Fibrosis. Among the many benefits is loss of fat, less fatigue, more active libido and a greater feeling of well being.
Hope this helps
Jackp

Jack, is your doctor monitoring your bloodwork for Estradiol?  From the reading I've done, it's clear that in TRT, it's important to monitor Estradiol (Estrogen) as much as Testosterone, because the body tries to convert T into E, and E is a libido killer among other things.  It appears a lot of general practice docs think you can slap on a T patch and be done, but in truth that often goes great for while until the body stops producing its own T because it knows foreign T is coming in, T values plummet, and then it starts converting all this new T you're putting in into Estrogen.  The crucial balance between T and E appears to be much more important than a high T number alone.

Some specialists now are not even starting with T replacement, but rather giving drugs that lower your E ... then the testicles kick in and start raising your T naturally.  This is actually what I'm hoping for.  Anti-Estrogen drugs like Arimidex are used, and an injectable called HCG. 

If you're on T replacement, definitely look into your E situation ... this appears to often be overlooked even by docs who are supportive of TRT.  The Endocrinologist I visited didn't even know why I was asking to test Estradiol with Testosterone ... I knew right then I needed to move on.   

nemo

Perhaps Tim could also comment on this, but my own perception (and I am not a doctor or pharmacist) is that an ACE inhibitor like Vasotec would be very unlikely to cause ED.  It is important to understand that hypertension ITSELF can cause ED because it tends to deteriorate the vascular system.  Some hypertension drugs are pretty notorious for ED problems, but I don't believe that ACE inhibitors are really high on that list.  I took ACE inhibitors for years and never had ED problems, ever.  However, everyone reacts differently to a particular drug.  The real danger that I see in this is that if you complain too loudly about Vasotech, you might end up being put on a BP med that really has ED issues.  An ARB might be better on this level, but ARB's are not quite as effective in terms of BP control and they are significantly more expensive.  The reality at this point is that ACE inhibitors are just REALLY GOOD blood pressure drugs.  There are, in my thinking, much worse options in terms of blood pressure control.  Additionally, you have to realize that if you can get your weight down significantly, and most guys can, you might well be able to ditch the BP drugs completely, AND realize some significant health benefits on multiple other levels as well.  I HIGHLY recommend the book "YOU: In a Diet" by doctors Oz and Roizen.  It enabled me at 6' 0" to get my weight down from 195 to 155 AND keep it there after numerous fruitless diet attempts.  Its a metabolic approach to dieting unlike any other approach out there, and it works.  - George

Quote from: sgtnick on September 11, 2008, 11:06:48 AM
george 999  -  on aug 27 we talked about ACEs & ARBs.  Which type of BP meds are least likely to cause ED?  I have a feeling that  vasotec is preventing me from achieving a natural erection.  Cialis does the trick so apparently something, maybe pentox?, is messing with my head (no pun)  Any suggestions?

Guys,

I don't ask much. Please do me a favor and read this thread starting at the bottom.  It is 4 posts - https://www.peyroniesforum.net/index.php/topic,139.0.html


Thanks!

Nick,  Hawk is only trying to admonish us to CHANGE the SUBJECT line from (in this case) "Re: Causes of Peyronie's Disease" to something more relevant.  This way it is easy for folks to intelligently search over the various posts.  All of us have at one time or another failed to do this and have incurred Hawk's wrath as a result.  So please keep posting, just try to remember to modify the default subject line as you do.  Also you can earn brownie points around here for going back and editing your previous posts and modifying the subject lines creatively in them.  And, in fact, if you look over the posts below carefully, note that when Hawk said "Guys", he was referring to a bunch of guys, not just you.  - George

sgtnick:

Hey my friend, don't give up the ship so fast! We need any and all posts and help we can get to keep this forum up to speed with good information.

I have been through the same feeling you might have at the moment on another forum that is now gone down the drain. We need all the help we can get to keep this forum up and running.

What the administrator desires for us is to place a subject line on each post that relates directly to the topic heading. That way, he does not have to spend time moving posts around. At the same time, it gives any and all readers the best possible arrangements of information, etc.

So, stay with us, we need you!!!

Old Man

Type just a word or two in the "Subject" line after you click "Reply" so it appears like the subject for this post. The forum is growing and this will help us keep it from becoming a behemoth that is impossible to find a discussion or topic. It will help the "search" function find things when we search for that buried post we can't find.

I'm 64 years old.  Been experiencing penile pain since April of 2006.  Brief Summary:
May 2006:  My GP (actually a nurse practioner) prescribed 10 day course of Cipro which did no good.  2006-2007  3 trips to board certified urologist for yearly PSA and rectal prostate exam plus a cystoscopy. No problems were found.  On each visit to uro I mentioned the pain and he basically said he didn't know what could be causing it and offered no further tests or treatment. Took a very casual attitude.  In the meantime I'm in almost daily pain and taking 800 to 1000 mg. ibuprofen almost every night. 
April 2008:  Woke up one morning with a partial erection and noticed an upward curvature.  I immediately concluded "Peyronie's".  It was again time for my yearly prostate exam so this time I decided to go to a different uro.  I'm in Memphis and the University of Tennessee Med Group is supposed to have some of the best drs. in the area.  I called one of their urologists (in fact I think he's the chairman of the urology dept.) and before making an appointment, made sure that he was familiar with Peyronies Disease and had a treatment protocol.  This Dr. is a professor at UT Med school and practices 2 days a week.  I was assured that he was well versed in the treatment of Peyronies Disease. Now I'm thinking I'm on the right track.  I saw him last week and he felt my penis and said that I had a small amount of plaque at the base.  Diagnosis: Peyronie's.  He immediately said that "We need to get you on 400 mg. vitamin E per day to soften up the plaque and come back in 6 months".  He said something like 50% of cases stay the same, 25% get better and 25% get worse. I mentioned Pentox which he had never heard of. Said it wasn't mentioned in any of the research lit. that he had read. To his credit he didn't want to do any kind of injections, even to induce an erection as it could cause further scarring. He said to take a picture. He was familiar with Verapamil and said that some of his patients had said that they had improved using the transdermal type. He said "The mind is a very powerful thing", leading me to believe that he didn't have much faith in Verapamil and that these patients were merely experiencing the placebo effect.  He said he could give me a script for a VED, but that if I can get an erection then I really don't need one.  I'm able to get a firm erection, but my wife and I have had little sex in the last 2 years due to the pain.  He encouraged me to have sex as that could be beneficial.  He went on to say that there is very little research in this area as all the research funds are going for cancer and heart research because those are the big killers in our society.  I asked him if he had heard of the Auxilium clinical trials with Xiaflex and he hadn't. 
So at this point I'm supposed to take 400 mg. of vitamin E and go back in 6 months.  My PSA had gone up from 2.2 last year to 3 and he seemed more concerned about that, but I've read that I'm in the normal range.  My question for you guys is, "What do I do next?"  I've read very "mixed reviews" about vitamin E and was disappointed that this was all he had to offer.  I plan to go ahead with the vit. E.  What's the best type to use? (Mixed tocos, alpha, gamma, a good brand and place to order it on the net, and any further suggestions from anyone on this forum.)  The pain subsided somewhat in May of this year and I'm no longer taking the ibuprofen although I'm experiencing some pain almost daily. Sometimes aching, sometimes burning either during urinination or afterwards (my urine sample was clean). The Dr.said that with Peyronie's I should only be feeling pain when erect, but I've read many posts on this forum that seem to contradict that.  Anyway, sorry for the long post, but any suggestions would be greatly appreciated, especially about the type of vit. E and other options.  Thanks.

Fred       

Fred, It would seem to me that what you have experienced is pretty much classic Peyronies.  It manifests itself in different ways in different people and most urologists don't seem to understand that.  I, too, often have urethral pain that seems unrelated to infection.  Inflammation does seem to spread to some degree within the body AND researchers have just discovered that nerve impulses, if sufficiently intense, can actually jump from one nerve pathway to another, thus causing the brain to sense a pain or other sensation that is not actually there.  I would DEFINITELY take the advice on the Vitamin E.  The full spectrum kind is best.  A number of web vendors sell a variety of brands.  400IU of alpha tocopherol should be accompanied by around 300mg of gamma tocopherol.  I would also start on 500mg of Acetyl L Carnitine 4X per day.  You may also find Mangosteen juice to be helpful.  It has helped me in the past significantly.  The best treatment of course would be Pentoxifylline.  I simply can't imagine a Peyronies specialist who has never heard of it OR a Peyronies specialist not aware of Xiaflex, but the doc you saw may in fact be a top urologist but NOT a Peyronies specialist.  I can also tell you that I just the other day, by accident, ran across a web site of a doc in Kentucky, which is not far from you, who not only works with Peyronies patients, but also seems very aware of Pentox.  I know absolutely nothing about him.  His name is John Tuttle, MD (http://www.drjohntuttle.com/peyronies.html) and I have hyperlinked his site to his name.  You might want to check with him about getting a second opinion.  He might just be willing to write you out a script for Pentoxifylline.

I would not be TOO worried about the PSA, BUT I would keep an eye on it.  One thing to know about PSA is that it fluctuates with body weight.  Thus, if you lose body weight, your PSA level WILL go up.  A lot of physicians are unaware of this.  In fact some researchers worry that overweight people can have NORMAL PSAs and still have cancer because extra body weight causes PSA levels to go down, BECAUSE a static amount of PSA gets diluted in a dynamic amount of blood.  More body weight, more blood, lower PSA number.  Less body weight, same amount of PSA excreted into a smaller amount of blood, PSA level rises.

Too bad that Uro is unaware of Pentox but a lot of uros are not aware of it.  I had to request a referral to Dr. Lue in SF.  Now my primary uro is keenly interested in Pentox and just told me on my visit with him today that he has been investigating it some on his own and has already run across doctors that are prescribing it.  As a community, we just have to do our best to make as many uros as possible aware of Pentox as a treatment for Peyronies.  In any case, I wish you the very best!  - George

George,

I'm still having trouble navigating this forum.  I hope I hit the right "Reply" icon. The only one I saw was directly above your reply to my post so I assume this will appear above your message.  Anyhow, thanks for the information.  I'm not asking for an endorsement of any particular product but can you direct me to a website that is reputable and possibly a good brand of the varieties of vitamin E you recommended.  I'm also going to check with either my GP or even my last urologist to see if I can get a script for pentox.  Thanks again.

Fred

I hear sometimes of stuff from patients that I have never heard about. If it sounds flaky, I say so (nicely), but I try to listen and learn.

It never fails to amaze me that a urologist who does this for aliving does not know about Pentox!

Fred, you case is all too common (in terms of seeing docs and getting that response). Old posts here by me and George do have some listed brands for vitaim E. You can do a search and then click on "advanced search" and search by poster, with keywords. You could try my name or Gearoge and include "vitamin E" and "buy" or "source" or so on and I bet you will get a hit or two. Normally I use a broad spectrum E from Solaray (I think!)(that's why I search the forum for what I said before!).

Tim

Viagra definetely caused Peyronies Disease with me. If it wasn't so embarrassing I'd sue Pfizer. To this day there are no warning at all that viagra can cause Peyronies Disease. There should be a warning not to take too large a dose, not to take if have nighttime erections and that usage delays ejaculation which leads to excess trauma. The only warning is about getting a 4 hour erection which probably does happen at night when sleeping.My guess is that many men have had Peyronies Disease develop from viagra but do not report it. I have tried to notify Pfizer but their website has no feedback, comment section. Thought viagra was something great, ended up being a disaster.

Ron,

Welcome to the forum.

How can you be sure Viagra caused Peyronies Disease rather than Peyronies Disease just followed the use of Viagra?

Ron,,,I don't believe that it was viagra that caused your case of peyronies,,,Not trying to go against you but!

I was hit with peyronies after my first dose of viagra,,,but looking back in retrospect,,i had and underlying previous injury from rough sex with the wife,,,viagra just triggered it into action. I do not blame viagra,,,and i continued to use it and feel that using viagra actually helped me to get back straight along with the use of Topical Verapamil and vita-E and massage....

I still use viagra and am not worried that it will cause peyronies again,,have been using viagra now for about 11yrs. This is just my opinion and experience,,,,,,,,,kimo

KIMO - dod you say your curve was fixed?? if so what did you use?

thx

REMEMBER, guys, that Peyronie's is caused by a confluence of a combination of factors, not just by one thing.  So, while Viagra might be completely harmless in a normal setting, given the right metabolic environment, it just might be able to tip the equation.  But huge numbers of people are taking Viagra and not ending up with Peyronie's, so the reality is that Viagra in and of itself does not cause Peyronie's.  Its always a combination of factors occurring simultaneously that causes Peyronie's.  - George

I went to my urologist after having early symptoms who listened to what I was saying and told me that I needed to get blood flowing down there as soon as possible.  I had felt pain awhile back while being masterbated by my girlfriend and then the symptoms had started.  He prescribed me trial samples of Levitra and Cialis.  He made sure to put in the coding that he had given me these so that my insurance did not cover the visit.  He told me to take the Cialis and get as much blood pumping as possible.  I took the Cialis and my girlfriend tried to get me off.  About halfway through, I felt an extremely high amount of pain.  It felt sort of like tearing and it was right in the middle on the top of my shaft.  I told my girlfriend to stop and as soon as she stopped my erection went away immediately.  I had not had an experience like this before which is what I have seen is a major factor leading up to Peyronie's Disease.  The factor being pain followed by an immediate loss of an erection due to a tearing of the erectile tissue.  Immediately after that, my penis would get less and less hard when getting an erection.  In the days following the event, I began to feel very itchy on the top of my penis right where the pain had occurred.  About a week later when I was investigating my penis I found a thick cord running from the base of my shaft to the top of my penis.  I found that this was very sensitive to the touch and that whenever I walked and felt pain it centered on this area.  This appears to be Peyronie's plaque. 

When I went back to this urologist I told him what had happened and he said that I needed to stop doing anything immediately.  He said that my girlfriend was being too rough with me.  I told him what he had told me last time and what he had prescribed me.  He said that he had done that because he thought that I was not having any pain when I had an erection but only that I could not get it up.  This was a preposterous comment as that was the entire purpose of my first visit.  Because of the severe pain when getting an erection!!!!

I became flustered at this point and began mentioning Peyronie's.  He told me to stop looking at the internet and that I was driving myself crazy.  He gauranteed me that I would be all better in 3 weeks if I stopped obsessing over it and looking at it and touching it.  He said that if I was better that I could cancel my appointment.  He made me repeat back to him that he was the doctor and that he knew what he was talking about.  It was very demeaning and upsetting.   

I ended up cancelling my appointment but obviously I was not better.  I did not want to go back to this urologist as it appears what he suggested for me to do was a direct result of what is happening to me now.  Before I went to him, I had pain when I had erections but they were still very hard and I was able to get off.  Now, it has been almost 3 months since I have had an orgasm that is not a wet dream and my erections are very soft.  I also have the obvious cord-like plaque on the top of my shaft.  It was a very clear divide.  Perhaps if I had been prescribed Pentox or an anti-inflammatory at the initial visit I would have gotten better instead of having a tramautic experience happen that obviously led to further and possibly permanent scarring. 

Am I eligible to sue for malpractice because of his negligence?  He tried to cover his tracks by explaining that he did not realize I had pain with my erections.  The way I see it I was no listened to and given a bad treatment option that scarred me further.  Life as I knew it is completely over.  I love to go the gym and go running but since the Cialis incident I can no longer run or due physical activity of any kind without hurting like crazy.   

Any assistance regarding malpractice would be great.

Kimo, Hawk and George999--

Well I am sure there could be other possible contributing factors to developing Peyronies Disease, in my case I am 100% sure I would not have deveoped Peyronies Disease if I had not taken viagra. To give just a couple additional reasons why-- when I would climax or  be near climax I would get a rush of blood and pressure and feel a "tearing" sensation in the area where I eventually developed a plaque. This concerned me, but again I had no reason to fear injury and had never heard of Peyronies Disease, etc. Also, using viagra caused a major delay in climaxing which led to much more trauma . I developed stretch lines on glans which is just another indication that too much pressure was being generated.

I started taking viagra periodically(once every week or two) at around 43 and in hindsight it was probably causing damage a year or two into usage per  erections were becomng significantly smaller. Very noticeable bend and indentations occurred at 48. approx. 13 months ago. Have read from doctors who say should not take ed drugs if have night time erections per can cause injuries and Peyronies Disease.

I was taking it more as a sexual booster. In hindsight, did not have serious ED, was just getting old, back troubles, trying to  keep up with the ladies, etc.

Again, had no reason to feel not 100% safe.

Kimo-- where buy Topical Verapamil and how long have to take, etc.  Thanks.

Ron

You know what they say about opinions, everybody has one.  Here is mine

Viagra generally results in the a reduction of Peyronies Disease causing conditions by increasing circulation which delivers oxygen and reduces TGFB2 and collagen formation.  It is part of the treatment for Peyronies Disease.  I suppose a person that does not need Viagra could over-do it but that would most likely result in priapism (prolonged erection) that reduced oxygen to the penis.  I cannot conceive of a person with ED of any degree getting an erection so tight it caused stretch marks.

I suspect that other factors were at work.  Either Peyronies Disease was already slowly at work to start with (thus the weaker erections) or the weak erections and reduced nocturnal erections set off an episode of Peyronies Disease.  The timing of the Viagra often has it showing up near the time of Peyronies Disease formation because if there was not a n obvious penile functioning problem Viagra would not be prescribed.

Often the firm erection of the Viagra reveals Peyronies Disease to a person that never noticed it in the weeks prior to Viagra because they did not have an erection sufficient to reveal the Peyronies Disease.

Hawk

Quote from: Hawk on September 25, 2008, 01:27:18 AM
Viagra generally results in the a reduction of Peyronies Disease causing conditions by increasing circulation which delivers oxygen and reduces TGFB2 and collagen formation.  It is part of the treatment for Peyronies Disease.  I suppose a person that does not need Viagra could over-do it but that would most likely result in priapism (prolonged erection) that reduced oxygen to the penis.  I cannot conceive of a person with ED of any degree getting an erection so tight it caused stretch marks.

I suspect that other factors were at work.  Either Peyronies Disease was already slowly at work to start with (thus the weaker erections) or the weak erections and reduced nocturnal erections set off an episode of Peyronies Disease.  The timing of the Viagra often has it showing up near the time of Peyronies Disease formation because if there was not a n obvious penile functioning problem Viagra would not be prescribed.

Often the firm erection of the Viagra reveals Peyronies Disease to a person that never noticed it in the weeks prior to Viagra because they did not have an erection sufficient to reveal the Peyronies Disease.

Hawk

I agree. My view is that an already existing problem may have played a primary role, and this may have become attibuted to viagra use (because we all search for the reasons why). Ron, regardless of the reason you have come to the right place in relation to helpful treatments!

Ron

I would not be too certain about why things go the way they go - that is the devilishly hard part of dealing with this disease; we never know for sure what causes it.

"Stretch marks" could be evidence of miniscule changes induced by TGF beta-1 to the health and shape of the skin. Particularly on the glans, there can be changes seen with Peyronies that are subtle but real. I found very tiny bridging "ridges" of scar like tissue running across the coronal sulcus (from the head to the shaft. The first to show up was at midline and it seems part of the ongoing changes in my midline anterior shaft. I now see a couple on either side.

Yet, I am not sure if they are there because I am using a VED, or if they would be worse if I were not doing the VED!

We never know. And if we get too certain, then we run the risk of making false assumptions and doing the wrong thing for our health. George recently wrote of making such a mistake in assessing the effects of one of his supplements.

I think that your theory about Viagra needs to be considered very carefully. It appears that treatment with it for Peyronie's is now viewed as less important than Pentox by Tom Lue (recent article). I too worried about it's possible role in making me worse. For now, though, I use daily low dose cialis (5-7.5 mg per day) for a constant increase in my NO activity and it seems to be of value.

Tim

ps - one theory holds that Viagra may lead to hard enough erections to notice the problem as Hawk said. A "tearing" sensation localized to the region suggests strongly that you had a problem there for a while so I guess it is possible that a harder erection and/or more vigorous sex could have led to a worsening of a problem.

I am new to the forum and developed Peyronie's almost two years ago (then age 44)....no bending but several hourglass deformities and other internal nodules.  Now still sexually functional, but slowly loosing length and girth.  Have tried vitamin E and topical Verapamil with no affect.  After reading some of the postings, I am wondering if anyone has heard of ties between some strong anti-biotics and Peyronie's?  Just prior to noticing Peyronie's, I was on a 10 day course of an anti-biotic.  One of the side-effects mentioned in the literature was Dupuytren's related issues in the hand. I did experience some tendonitis type symptons of pain in the palm as well as in the heel (plantar fasciaitis sp? type pain) which slowly went away after discontinuing the medicine.  Less than a month later I noticed the initial symptoms of Peyronies.  Would appreciate any feedback if anyone has experienced something similar.

As with most of you, my insurance won't cover anything associated with Peyronies and my Urologist was pretty non-committal during any exams, so other than topical Verapamil and Vit E, I haven't tried anything else.

Is there additional risk is taking Viagra / Cialis or should I stay away from that?

Any feedback would be appreciated.

DAVE

Hello Dave,

I developed damaging fibrosis in my penis one month after a stupid anti-biotic treatment of infectious mononucleosis. IM is actually a virus-caused disease, non treatable by ATB. My crazy GP didnt want to make me blood tests and prescribed me three different and strong ATBs within 2 weeks!! I also had a strong inflammation in the body, CRP level and Leukocytes were far over the treshold. Glucose level was also increased. My immune system was broken. So, I was the best candidate to develop any damaging disease  ;) And it actually happened. I was just 21 years old.  :o

It's such a complex area isn't it. There are people who think that use of viagra caused (or contributed) their peyronies, others blame antibiotics and so on. My own view is that trauma of some kind of likely involved in most cases, or that occasionally a pre-existing condition may result in peyronies. I tend to think that we attibute blame to whatever we can or whatever seems most obvious to us. It's hard to rule anything out totally of course because nobody has all of the answers.

What is also so troubling is that the time span of this disease seems so vague. Some people seem to experience improvement with the help of treatments, others struggle seemingly indefinitely with flare up after flare up. Some develop a curve overnight, with others it occurs months or even years after an injury. This level of diversity makes it hard for people to get their head around the condition and to decide upon an approach that can be useful for all.

At least there we now have some treatments that certainly go some way towards helping with peyronies in some cases, but we still have along way to go...

I think it is important to remember that one of the core issues resulting in Peyronie's is that of TGF-Beta1 attacking healthy tissue.  TGF-beta1 is a cytokine intended to attack foreign invaders like infectious bacteria.  It is normal for it to be present in body tissues.  It should NEVER be attacking healthy body tissues, no matter how concentrated its presence.  Thus, in the case of Peyronie's we are dealing with a malfunctioning immune system.  In this case what typically happens is that some minor occurrence causes certain healthy tissue to become inflamed.  The malfunctioning immune system detects a problem and goes on the attack.  But since it cannot identify the inflamed tissue as being normal, it attacks it, increasing the inflammation and spreading it to adjoining tissue.  A cascade of events that is responsible for a number of other maladies in addition to Peyronie's.  In the setting of a malfunctioning immune system, a number of events can trigger Peyronie's.  In the setting of a NEARLY malfunctioning immune system, a number of events can ever so slightly tip the scales and, together with an appropriate trigger, induce the nasty cycle that we know as Peyronie's.  So I think it is important, not so much to figure out "what" caused it, as it is to identify what things might help it.  I am NOT saying that we should not be discussing causes.  ONLY that we need to be careful not to become fixated on causes or on assuming that we have suddenly found the one and only cause of all causes.  In a similar vein, I think it is important not to become so fixated on finding THE "cure" as it is to recognize that the road back to health is as complex as the road to the disease was in the first place.  Currently there is NO "proved" cure.  There are treatments with good evidence to back up their usefulness, but none are "proved" surefire remedies.  Those insisting on such a remedy may waste a lot of time and a lot of very promising opportunities for improvement of their conditions.  - George

George - I certainly agree with this. It's all too easy to concern ourselves with the question "why has this happened to me?" when what really matters most is how to get on top of the issue to the best of our ability. As you state, sadly nobody holds a miracle cure, but there are positive steps that we can take to at least attempt to address the problem. There are also potentially very effective treatments on the horizon.

Dave46 -  have you thought about VED use? If you are experiencing hourglass deformities, it sounds to me like it could potentially be the best angle of attack for you right now. What do other people think?

I hope the thoughts below are helpful. I noticed that i've been quoting posts when that may not be required, so i've gone back and removed quotes and in future will attempt to choose appropriate subject headings to allow for easier searching of the posts :).

Hi Dave,

I agree with George that multiple pathways can lead to this condition, so the path that you took is certainly a possible real trip (though a doctor would probably equivocate on that).

But as George says, the issue is where do we go next. I think how we got here is very important in terms of answering that question, though, for it may lead us to different conclusions on how to get out of the mess. In your case, first, don't take those kind of antibiotics!

Second, in addition to topical verapamil (won't hurt, may help), be sure that your vitamin E is broad spectruma nd includes all four tocotrienols and tocopherols. Finally, investing some money in a VED and getting started on a regular program of gentle pumping can help a lot too. When I finally "got it" about the theory behind using a "small" cylinder, and did it, I saw immediate 10-15 degree changes in my curve and I have been able to maintain erectile health and shape using it.

Tim

Quote from: newguy on September 26, 2008, 11:24:20 AM
I noticed that i've been quoting posts when that may not be required...

Quotes can be very useful.  It is not necessary to eliminate them.  In the future, after you hit the quote button just trim the quote down so we don't have entire posts repeated. (like this example) 

I appreciate you efforts to use subject lines that make the forum more usable for everyone.  ;)

Quote from: Hawk on September 27, 2008, 12:01:53 PM


I appreciate you efforts to use subject lines that make the forum more usable for everyone.  ;)

Thanks Hawk. I am eager to provide meaningful contributions to the forum. In a sense you, Tim, George and Oldman (and others) play a very meaningful role in this field. You are pioneers of sorts :). You shine a light on an area that many medical professionals treat with complete disinterest and many others are simply embarrassed about. As much as it's shameful that others avoid peyronie's altogether, it's commendable that you provide a place for people with very real concerns, and often considerable distress to be themselevs and share their problems.

Tim:
When you started using the small cylinder how long was it before you got the 10-15 degree improvement (dorsal,ventral,lateral)? Also, how long have you been using VED and what results overall would you say you have achieved?

I got results once I started using the smaller cylinders within about three weeks. I had used the larger cylinder for about a year with no help in angulation.

The improvement stopped at about 10-15 degrees and did not get better - I still have an about 15-20 degree upward curvature at the end, but it does not get in the way of intercourse.

More recently, I have developed dents on the left and a tendency to curve to the left, that seems to be actively resisted by my use of the VED. One never knows, but I think it worsened over a two week vacation when I went without the VED, so I now stick to the VED (mostly the smallest diameter tube) quite religiously.

Tim

Tim, some questions:
Was there any reason why you only used the larger cylinder for a year? Was your curvature not being forced straight at all because of the size of the larger cylinder? Did you notice any improvement in waisting/girth ? What was the longest period of time you stopped using VED and notice and relapse of any curvature and to what extent?

I used the large cylinder because it was all I had and I wasn't sure I agreed with the principles of the protocol, so I did my own thing. I saw no real improvement until I used the narrow cylinder, which took me a few weeks to get the hang of using (I kept getting erections and being unable to use it; or not using enough lubricant and having it tug at my skin painfully).

I went two week without it and had a "bout" during which time I worsened noticeably - though primarily in the form of waisting or denting as I call it.

Tim

TIM468 - how long have you been using VED?? and I notice you have never been on Pentox - do you think this has affected you rate of improvement??

i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

I have never heard that masterbation was limitless...  But yeah, that is definitely what caused mine.  Granted, it was my girlfriend masterbating me but same thing.  It is completely ridiculous for this to happen to anyone.  However, you've got people that go around using women for sex and beating them and throwing them aside, people who rape women, etc. and they are fine.  I am not. 

Life is BS. 

Quote from: despise on September 29, 2008, 06:56:40 PM
People say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head.

Despise I have no idea if you are serious or a prankster.  If you are serious I feel for you but:

1.  What does "masturbation is limitless even mean?
2. What do you mean you learned to masturbate with your head?
3. If you humped carpet every day from the age of kindergarten then masturbated with your head (???) Peyronies Disease may not be your most pressing problem.


I have read over ten thousand posts but I must be missing something with this one.  Care to explain?


Hawk

I think he means he came to his senses and started masturbating the "proper" way.

despise: What sort of angle do you think your curvature is? I also assume its ventral (i.e. downwards) ?

God help me if anybody I know ever figures out my pseudonym, but I too humped the carpet when I was a little kid. Always loved to hump the carpet while flaccid (very important) or any hard surface. When I learned regular masturbation as a teenager I slowly discontinued this habit. One day I decided to see how many times I could masturbate consecutively. I think I did it 8 times, then decided to do the carpet thing when I could no longer masturbate. Looking back, sounds pretty pathetic and perverted, but I just kinda thought it was funny, kinda wanted to see how far I could go....kinda needed to study for exams and decided I should just do this until I wasn't horny anymore so maybe I could concentrate.

It was about 2 months later I noticed that my penis seemed to feel slightly different, like structurally it was curved just a hair to the side. My penis would probably have seemed normal to any girl at the time (had I been having sex), but I could tell a difference. There is at least one website which strongly condemns this form of masturbation and claims that it is damaging.

Is there a connection between my episode (and taking Propecia and MSM and glucosamine) and my Peyronie's? Who knows? One can only speculate. But if there is, it has certainly changed my life.

If there is anyone who respected me on this forum who now no longer does, I certainly don't blame you. ;)

Jack,,,,,,I don't know how anyone could think less of you,,,,you have opened up and shared your experience...I too did such things when a young teenager,,,used to see how many times i could masturbate in one day,,i think it was maybe close to you, 6 or 8 times in one day...I was doing it so much that one day after a few episodes i shot a big blood clot and it scared me to death,,,i eased up for awhile and then went back to it,,,,sounds crazy but i was so horny and always have been and still am at 63.....I just don't get to expell as much any more..
I understand where you are coming from and don't think any less of you....we all have things that we have done and would never point a finger at you or anyone else..Thanks for sharing..

I believe that if we as men would talk more to the younger men and educate them to be more careful with there penis's there might be less injuries...This is just my thoughts and experiences...

Kimo

Thanks Kimo, I appreciate it. The thing is, of course nobody wants to have Peyronie's......but if I've got to have it, I'd sure rather be able to say it happened after having a beautiful broad bouncing up and down on me than from humping the carpet! haha!

And yes, I do agree with you on educating the young on this. The day I did this, I actually thought to myself I wanted to do this until I caused damage. It was just a crazy sexualized thought, I did not really believe damage was possible or plausible. The problem is that warning kids about that sounds like the old hysteria of trying to guilt and scare kids into not masturbating. I think that this warning should be emphasized to the young in sex ed (i'm sure if i'd heard it even in 6th grade sex ed, it's the kind of thing that would have stuck with me forever) in a rational manner, but I think it will be a long time before such an idea will be implemented.

I really really really want to make a joke about humping carpet...

But I have done so many dumb-ass things with my dick during my life that it would be silly to judge someone else.

Horny teenage boys do some pretty dumb stuff (read "Portnoy's Complaint" about him screwing the family's dinner meal if you want a perfect example).

For the most part, we get away with it without an injury or without damaging ourselves. Sometimes we are not lucky that way. But, to me, it is like thinking a guy who got HIV from sex is "bad" and a guy who got it from a blood transfusion is "good" - it's pointless. It doesn't help anything.

Perhaps if I could "identify" something I did, I could blame myself for years, constantly angry at myself for being "stupid" and berating myself for all my problems. So, I guess I am lucky that it just showed up one day after a summer in Alaska. I never knew why, but at least I don't have to waste time blaming myself.

Tim

Unfortunately, I am in that boat Tim.  I never in my life did anything dumb with my dick.  I only masterbated every couple days, never very vigorously.  After I was masterbated by my girlfriend twice, which was the only time I have ever been gotten off twice in one day, everything fell to crap.  I felt pain at the time, but did not know that it signaled the beginning of the nightmare I now call my life.  I waste all my time just wishing I could go back and go to sleep early or something.  And I love my girlfriend more than anything and know that she did not mean for me to get hurt...

But there is something that affects me psychologically on a very deep level to know that every day I will have severe pain while I walk around.  To know that when I look at myself in the mirror I will see something disgusting.  And to know that if I tried to, I WOULD NOT BE ABLE TO HAVE SEX.  It is not possible for me to give my girlfriend, who is a virgin, that experience.  I can't even masterbate anymore.  Everything in my life has been completely stripped away. 

Everything related to nerves with my penis is completely numb and I get no pleasure from anything involving it.  I don't want an implant because I know that if I can't feel anything now, I definitely won't be able to feel anything then. 

I envy those of you with extreme curvatures that are still able to become hard enough to have sex and are able to experience any amount of pleasure at all out of sexual activity.  I have zero pleasure and nonstop wet dreams. 

:( 

alcohen,  Just a question.  Have you ever been seen by a really top notch specialist in Peyronie's or Sexual Medicine?  I really think the right doctor *might* be able to sort some of this out.  The loss of feeling is really baffling and extremely rare for a young person like yourself.  In any case, the really good news is that we live in a time when medical technology is moving extremely fast.  When I was your age, I had a urological problem supposedly without a cure.  By the time I was in my early thirties, I just happened on a doctor who referred me to someone who fixed the unfixable.  I'm telling you this to encourage you to try to chill out a bit and have hope that somewhere out there, there is help for you and at some point you will find it.  I know its not easy.  I have been in a similar situation.  But depression doesn't get you any closer to a solution and reasoned optimism often can.  I wish you the best!  - George

Alcohen - Don't give up hope. Whatever your current situation, with time and the use of therapies detailed on this site, there is a chance that you will see improevments. As George states, medical technology in this area is gaining pace, and as such what currently seems like a hopeless situation to you, may in time become a more hopeful one. Your case sounds somewhat different from the average case here, so I would urge you to look into seeking advice from someone skills in this field

George (and co) - Continuing with the theme of the diversity of peyronie's cases, on occasion some people appear to develop a curve just days after a sexual injury, others over a year after an injury. If peyronie's is a problem due to scarring caused by an escalating inflammatory response, how do these two different scenarios fit into that?

Hell, there were two months in between this happening and my first symptoms, and for those two months, I certainly didn't do anything crazy or strenuous in that regard, so for all I know, there's no connection.

But on the level of suggesting literature, I suggest Chuck Palahniuk's (of Fight Club fame) short story "Guts", readily available on the internet.

newguy: i think if it's a year after an injury doesn't that make it pretty debatable whether the injury was the cause or not? Shortly before getting Peyronie's I tried to get prescribed Avodart for hair loss which can be more effective than Propecia, but also has a longer half life and more sexual side effects (both drugs are for enlarged prostate, Proprecia in a higher dosage under a different name). Had I been prescribed this, I'm sure I would have blamed my Peyronie's on it. I think unless you have a sudden, sharply painful injury, it's difficult to assign blame.

Quote from: jackisback on October 01, 2008, 01:02:43 AM

newguy: i think if it's a year after an injury doesn't that make it pretty debatable whether the injury was the cause or not? Shortly before getting Peyronie's I tried to get prescribed Avodart for hair loss which can be more effective than Propecia, but also has a longer half life and more sexual side effects (both drugs are for enlarged prostate, Proprecia in a higher dosage under a different name). Had I been prescribed this, I'm sure I would have blamed my Peyronie's on it. I think unless you have a sudden, sharply painful injury, it's difficult to assign blame.

I only thought of mentioning it because, when reading through peoples strories on here a number of people appear to have experienced actual physical changes many, many after their initial injury. There appears to be no set pattern as such in that some people (perhaps most) feel pain and then develop a curve as this pain diminishes or stops, however others develop a curve and there is still pain. Of course, many do not feel pain at all, but its likely that some traumatic occurence has set events into actual. I guess it's summed up by saying that everybody is different. It just surprises me how different.

Personally, with more men using the likes of propecia, avodart and other male only drugs like viagra, I think there may be a feeling that the drugs are linked with medical problems that occur in conjunction with them. I'm not convinved that these drugs can be blamed for peyronie's though as I think, due to the vast number of people taking them, we'd be hearing a lot more about this. That's not to say that they can't contribute in a negative sense to a persons health in any particular area, but I would be wary of attributing blame. So in essence I agree with you. I think we try to assign blame to x,y,z, but research does suggest that there is a strong link between trauma and peyronie's.

Question)  I'm interested in members opinions of how the length of time a pain exists can contribute to the severity of peyronie's. Let's say someone has a pain for a few days and later develops a curve and/or wasting. Would it be safe to assume that this person would be less affected by peyronie's than someone suffering from pain for 6 months before any physical symtoms, or do you not feel that there is any correlation between pain duration and eventual appearance?

alcohen,

The symptoms that you describe do not make sense to me.

Wet dreams? Do you have an erection and ejaculate during the dreams? That is what a wet dream means.

Some of what you are describing sounds like "anhedonia" which is a problem that is located between your ears and is a symptom of depression. But it can contribute ENORMOUSLY to the problems of erectile dysfunction and sensation.

Finally, masturbating twice in one day with your girlfriend does not sound like enough anything to attribute that to causing your problem.

I agree with George that you need to go to a top notch specialist and get help.

Tim

Thanks for the replies.  I will continue to hold out hope for things in the future...  Everything is just incredibly frustrating.  When I mentioned wet dreams, I was referring to a post I made on here about a week ago in another thread.  I wrote about that I am constantly having wet dreams (erections and ejaculating during my dreams).  Ever since I hit puberty, if I didn't masterbate for 4 or 5 days straight for whatever reason I would have a wet dream.  I always assumed it was from pent up sexual desire.  Sure enough, if I masterbated on a daily basis or even once every 3 days I would never have a wet dream.  Now, due to not being able to masterbate or have my girlfriend pleasure me at all because of no sensation and pain I keep having wet dreams.  It is not fun. 

For those who have followed my symptoms since the beginning, I had the first problems after being masterbated twice four months ago.  The following morning I had swelling, blood under skin, and bumps near the bottom of my shaft.  I went to the doctor who misdiagnosed me with herpes, yadda yadda two urologists who told me it was all in my head later including one who gave me Cialis and upon taking had pain with my erection and immediate loss of it and here I am waiting to return to my current uro to have a blood doppler ultrasound done.  It is scheduled for December 29th but I am trying to get it done sooner either by his office (UNC Hospital) or someone else.  That last sentence was making a very long story short. 

But I had the inflammation, the reduced inflammation, an obvious shortening of my penis, loss of sensation, emergence of cord looking mounds that do not move with my skin, nodules up near the top, mounds on the underside of my penis and obvious scarring on the skin itself where a mound on the left of my penis is.  All these things come and go during the day in addition to the hourglass-like indentations.  Everything is maddening because it keeps coming and going.  My penis used to point diagonally upwards (not curved at all) but it not points outward and down.  I am assuming this is because the biggest mass is on the underside of my penis.  It is especially prominent near the top of my shaft on the underside.  This is where I used to have the most feeling sexually but it now feels as if my nerves are being blocked by whatever is in there.  There is a mass on the left of my penis and it curves to the left at that location.  This particular curvature differs the most on a daily basis.  Some days none at all, some days there definitely is some and the area feels hot.  Perhaps some inflammation still at work. 

Thank you for all the helpful words.  It is just really hard to concentrate on anything in my life with such a horrible problem... 

Quote from: alcohen on October 01, 2008, 10:27:56 AM
Thanks for the replies.  I will continue to hold out hope for things in the future...  Everything is just incredibly frustrating. 

Your case sounds quite unique, and though I don't always suggest that people keep constant medical opinion, it seems to me like the more opinions you can get on this the better. It is perhaps encouraging that on certain days there is less curvature than on others. Whatever the case, your condition appeares to be very active and as such, further investigation, possibly followed by use of pentox and so on would be my advice.

alcohen,  The key to this issue might just be to investigate the neurology side of the equation.  I mostly agree with Tim on this.  Wet dreams pretty well test everything out.  BUT, if I am not mistaken, wet dreams do not test out the functioning of the key nerves that deliver stimulation from the penis to the brain.  If you have abnormal sensation in your penis, you should be getting checked out by a sexual medicine doctor or perhaps even a neurologist.  A major headache for people with conditions as rare as yours is, and yours IS rare, is that physicians condition their diagnoses on the expectation of more common problems.  The possibility of a rare condition often does not really cross a physician's mind during the examination and it is really frustrating for the patient as the physician tries to exhaust all the other possibilities and sometimes misses what should be obvious.  - George

Quote from: despise on September 29, 2008, 06:56:40 PM
i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

despise: Are you still around? I'm interested to hear more about your situation because it is similar to mine, i think.

The internet tells me that this lying down masturbation can lead to something called "TMS" i.e. Traumatic Masturbatory Syndrome. You can google it up and find out more, but it seems to not have much scientific backing. To me, it seems logical though that lying on a bed or carpet and masturbating would be bending the penis in a non-normal way, which in SOME people would cause damage. I'm not sure if this damage would result in scar tissue, or something else - in my own case I cannot feel any nodules/plaques on the underside of my unit but i have a downward curve.

I've found some accounts of people online talking about masturbating in this fashion and having curvature....however some sites say that 5% of all men have masturbated like this and it seems that curvature isn't an issue for them?

Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position" ???    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)

I developed Peyronies Disease after prostate surgery.  I had no erections for six months and was put on trimix.  First few shots were fine but by the third shot I noticed a curve.  By the sixth shot I had a 90 degree curve upwards.  Doctor assures me that the trimix injections did not cause my Peyronies Disease.  I'm just wondering what is the incidence of Peyronies Disease in men using trimix.  Anybody have any idea how I can get this information?

Greg

Gregory:


Welcome to the forum!!

WOW, what a trip for you after prostate surgery. The surgery was bad enough only to "get" Peyronies Disease afterwards. However, you are no alone with this symptom after prostate surgery. The basic same thing happened to me after a radical prostatectomy in April 1995. No erections for months afterwards, trimix and other injections for ED with no results, resulting in curves, nodules and plaque. After everything failed, my uro RXd the VED for me.

It took about another 6 months on the VED therapy to "cure" that bout of Peyronies Disease. My results came out all right with after effects from that bout. If you will open the VED thread on the Child Boards link on the Home Page of this forum, you will find much information about VED usage. In addition, read all the threads on that board that are of interest to you. There is much info there in a condensed posting order so that you don't have to search through all the topics to find any particular subject matter.

Sorry to hear that you have joined the Peyronies Disease club, but the same thing has happened to many guys. IMHO, I believe that during surgery your penis may have been damaged in some way. I know that my uro admitted that they had to "handle" me quite severely down there since my prostate was so large and my stomach cavity is rather small, so who knows.

Let us know if there is anything any of us on the forum can help with, so feel free to do so.

Old Man

I attribute my Peyronies Disease to Bimix injections following a laproscopic prostatectomy.  I took bimix injections 2 times a week for 8 months.  If you read my entry in the topic titled "Our Histories"  you will read the entire account.

Thanks for the nice welcome, guys.

As I said, the doctor assured me that my Peyronies Disease was not caused by the trimix injections.  What troubles me is that the first two injections of the trimix resulted in a perfectly straight erection and long and full just like I was before surgery.  Doc says keep injecting.  If Peyronies Disease was not caused by the trimix, then fine, I'll keep injecting.  But if the cause was the trimix, then will continued use prevent the Peyronies Disease from getting any better.  BTW, I just finished my first series of six verapamil injections with no noticable improvement.

What I want to know is how many men using trimix or bimix have or have not develeoped Peyronies Disease. And of those who did, how many were using the injections to achieve erections on account of prostate surgery.

Greg

I want to once again point out that in a general sense, penile injections are safe.  If they were not, they would never have gotten past the FDA testing stage required for approval.  HOWEVER, they are likely NOT safe for anyone who may be vulnerable to Peyronie's.  Therefore, while the urologist may be correct in stating that the injection(s) did not CAUSE the Peyronie's, what they are not telling you is that the injection(s) may have TRIGGERED the Peyronie's.  So if injections were FOLLOWED by Peyronie's, I certainly would not keep on injecting.  I WOULD begin to try to deal with the Peyronie's through whatever strategies work for me.   Just my two cents on this issue!  - George

The following is just my 2 cents worth of knowledge based on my experience along with many others that I have worked with in counseling work with the ACS and the US TOO Prostate Cancer support group.

I know of no case of Peyronies Disease in the above work, that did not result after penile injections. Each and every case of Peyronies Disease that I have worked with in those groups developed Peyronies Disease after the injections whether or not it was for tests for ED or Peyronies Disease with verapamil. The Caverject injections for ED therapy caused my Peyronies Disease to develop once again after having gotten rid it earlier.

My advice to any and all before getting penile injections of any kind should consider all the angles and ask questions prior to having them done. There is just too history of Peyronies Disease developing from these injections to overlook the fact that Peyronies Disease does occur after getting the shots. More and more guys seem to be prone to Peyronies Disease than ever before for whatever reason.

The above is submitted for information to any and all considering penile injections for any purpose.

Old Man

Thanks, George and Old Man,

I was hoping that wasn't the answer to my question but deep down that is what I expected.  So, not all men develop Peyronies Disease because of penile injections, but if you are predisposed to Peyronies Disease, the injections will likely tigger it.  Why can't the doctors tell us this?  However, even if told of the risk, I probably would have opted for the injections to get an erection.  I should have stopped at the third injection when I could see a that I was starting to curve.  But, it was probably too late by then.

I'll keep my fingers crossed for successful Xiaflex trial results.

Greg

Gregory:

Remember that you can always fall back on the VED for erections. That has been my weapon of choice since a radical prostastectomy way back in 1995. The Trimix injections gave me Peyronies Disease symptoms with each and every one so they were DCd.

Even the ED pills were of no value for me due to very serious side effects and did not produce erections firm enough for good sex. Anyway, all is not lost because you can achieve erections in other ways than the injections.

Old Man

Quote from: wayne999 on October 22, 2008, 06:01:07 AM

Quote from: despise on September 29, 2008, 06:56:40 PM
i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

despise: Are you still around? I'm interested to hear more about your situation because it is similar to mine, i think.

The internet tells me that this lying down masturbation can lead to something called "TMS" i.e. Traumatic Masturbatory Syndrome. You can google it up and find out more, but it seems to not have much scientific backing. To me, it seems logical though that lying on a bed or carpet and masturbating would be bending the penis in a non-normal way, which in SOME people would cause damage. I'm not sure if this damage would result in scar tissue, or something else - in my own case I cannot feel any nodules/plaques on the underside of my unit but i have a downward curve.

I've found some accounts of people online talking about masturbating in this fashion and having curvature....however some sites say that 5% of all men have masturbated like this and it seems that curvature isn't an issue for them?

Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position" ???    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)

Let no question go unanswered folks. Any takers?

>>Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position" Huh    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)<<

Um, the penis does not go straight up - if it is a really standup kind of erection, when hard it sticks out at about a 60 degree angle upwards. If it is not as hard, it takes one finger to lift it up to about that angle.

When you lie down on a woman to make love, your penis does not stick out at a 90 degree angle - instead it angles up at an about 60 angle, which is about right for the angulation of her vagina which does not go straight up inside her (if she were standing up) but instead agles back at - are you ready for this? - a 60 degree angle.

We were designed for sex, and then we were designed with some flexibility so we can do it in all sorts of ways.

A picture might help... experience will help more.

Tim

Has anyone besides me come down with Peyronie's after taking Metoprolol (Beta Blocker)?  I had no symtoms prior to the medication.  I then had a bypass and left the hospital with full-blown Peyronies.

Gerald - ghinin@verizon.net

Hi....

       Peyronie's disease, a condition of uncertain cause, is characterized by a plaque, or hard lump, that forms on the penis. The plaque develops on the upper .....
Hard lump on the penis often causing bending. More detailed information about the symptoms, causes, and treatments of Peyronie's disease is available below.

    * Penis inflammation
    * Penis scar
    * Penis lump
    * Bent penis
    * Painful erections

Dear Dusty Letha,

Please do not spam here with a link to a skin care products site as if that has something to do with Peyronie's Disease.

Tim

I was wondering how many others out there took Glucosamine/Chondrotin before developing Peyronies Disease? I was thinking of a connection between these drugs and Peyronies Disease and just recently saw that someone started a thread with a poll about this exact issue.

Maybe they are connected?

bluth,  Peyronies Disease results from a fundamental metabolic imbalance in the body.  If a person is experiencing that imbalance, there are all kinds of things that can trigger Peyronies.  This is also true with a number of other mysterious diseases.  In my case, Peyronies was definitely linked to Metoprolol, a  common cardio drug.  But trying to identify these triggers is an exercise in futility.  What difference do they really make?  How will that information help us now?  Rather, the goal has to be in curing the underlying metabolic imbalance and things like healthy nutrient rich, calorie starved diet, frequent and appropriate exercise, and sufficient exposure to full sunlight are the keys to dealing with that imbalance and the autoimmune linked systemic inflammation it promotes.  - George

why do you say a "calorie-starved" diet, George?  don't you think a high calorie diet is fine as long as it is healthy, and you exercise and you need the calories b/c you are an ectomorph like me?

Jack,  If one is eating only healthy foods, their diet will be calorie starved.  Those kinds of foods that are often referred to by the phrase "empty calories" are exactly the problem.  Research is showing that they are the source of much of the metabolic dysfuntion that most of the population is experiencing and, along with vitamin D insufficiency are fueling the epidemic of chronic disease in the US and in the world at large.  A recent study demonstrated that overweight 10 year olds have arteries that are exhibiting the deterioration typically found in 40 year olds.  Thats how the wrong kinds of foods can wreak destruction on the body.  And your body type really doesn't matter that much.  After all, there are very normal weight people that have heart attacks, strokes and other serious health problems at a relatively young age.  Of course, add weight in the body core makes the risk a whole lot higher.   But I certainly would not rest easy on the fact of not having a weight problem.  Does this mean one can not enjoy apple pie and ice cream occasionally?  Certainly not!  But the benefits of a healthy diet as a pattern are beyond measure.  The reality is, the fewer calories you consume, the better your health will be.  And that doesn't mean you need to be anorexic, of course, you just need to eat sensibly.  - George

This will be a lengthy post, please bear with me.

I will posit that the development of Peyronies is a response to high sugar diets and offer a potential new avenue of exploration. 

I am not a doctor and I am just saying it as I see it now. I have a lot of education about certain things in the human body because of my other conditions.

My background is quite important to see where I am coming from:

Age 0-29: Normal person, no known health concerns
Age 30: Diagnosed type 1 diabetic
Age 35: Erectile dysfunction
Age 36: Peyronies disease

First I want to note that I now have a number of known autoimmune diseases. Diabetes is one, thyroid is another. Peyronies may be another. This is important. Bear in mind that diabetics have a much much higher degree of Peyronies than other population groups. This is key.

Second, I see more doctors than anyone else I know. As a diabetic, I am observed regularly by kidney, eye, liver specialists. This gives me a certain insight into blood sugar from food intake and its effects on the body

Diabetes is an autoimmune disease and is degenerative. The reason I see so many specialists is because uncontrolled blood sugar (but really we are talking high blood sugars) is very, very bad for you. It can affect your eyes, your kidneys, your liver and, I believe, your penis.

Some of you will be thinking, I don't have diabetes, move on. I say hold on. I didn't have diabetes, I developed it. Sounds familiar right? Yep, same with Peyronies

Why is it degenerative? Because my pancreas now produces no insulin which should regulate glucose (the sugar in our blood). Glucose is the energy that powers our cells. Why do we regulate glucose? Because it feeds your cells. What happens if you have too much glucose? It burns your cells up. What the hell has this to do with you?

Here is my take: we eat a lot of processed food that is high in sugar. Pizza, pasta, breakfast cereal, breads without grains. So we are nearly all eating high sugar foods. The body is under strain. Many people will become diabetics later in life because of this – it's called type 2. It's because your body cannot keep fighting the excess amount of sugar it is being fed. This is especially true in fat people because there are a lot more cells relative to the pancreas to deal with.

The excess sugar is processed by the kidneys through the urethra and out of the penis. My thinking is that just like a riverbed, some of the crap is deposited on the side and on the bed.
From this, we all become more susceptible to developing peyronies. I have a suspicion that the factors are then there for Peyronies to be triggered – some people point to masturbation or using Viagra. I think that it is secondary. I also note that a lot of people point to surgery that again follows this chain of events in that it is linked to the pathways between the kidney and the penis. Again, this is the same situation with alcoholism, the excess garbage has to filter down the little urethra tubes and out of the penis. To me these are all interconnected.

Ok, so far so good. Now what? Obviously I don't know. I have just been confirmed with my Peyronies Disease diagnosis. My urologist told me there was nothing to do and to delay surgery for as long as I can. Thanks. I see a million different approaches on here using drugs I have never heard of before. I already take insulin, something to keep my liver functioning, something to delay the kidney transplants, something for my thyroid. And this is before considering anything for Peyronies!

But I did see something and it excites me. Both for all of the above issues and Peyronies.
This is the link and the full text from the BBC website:

http://news.bbc.co.uk/2/hi/health/6935482.stm

Diabetes problems 'vitamin link'

A simple vitamin deficiency may be the cause of many of the side effects of diabetes, a study suggests.

Researchers found people with the disease expelled thiamine - vitamin B1 - from their bodies at 15 times the normal rate in a study of 94 people. The Warwick University team said thiamine helped ward off complications such as heart disease and eye problems, the Diabetologia journal said. Experts said diet supplements could potentially help people with diabetes. It is the first time a deficiency of the vitamin, which is found in meat, yeast and grains, has been identified in people with diabetes. It has been missed in the past because of the way thiamine levels were measured.
Traditionally, the activity of an enzyme called transketolase in red blood cells has been used to indicate thiamine levels. But the researchers found that increased activity - usually a sign of high thiamine levels - was also associated with the body's response to deficiency.

Instead, the team measured thiamine levels in blood plasma and found concentrations were 76% lower in people with type 1 diabetes and 75% lower in people with type 2. Thiamine is key to warding off vascular problems such as kidney, retina and nerve damage as well as heart disease and stroke. It works by helping protect cells against the effect of high glucose levels.
Trials are now being carried out to see if supplementing diet with thiamine could return levels to normal. Diets Lead researcher Professor Paul Thornalley said: "It is early days, but it could have a huge difference.

"Supplementing diets could be an effective way of minimising the risk of these complications." Matt Hunt, of Diabetes UK, which helped to fund the study, said more research was needed. But he added: "The study could potentially have very exciting outcomes. "Around 80% of people with diabetes die of cardiovascular disease and diabetes is the leading cause of blindness in the UK's working age population. "Therefore, any research that could help must be looked at seriously." 

So here is the thing that makes it click for me. Diabetics have a much higher incidence of Peyronies. Diabetics have manifest blood sugar control issues. I suspect that non-diabetics have latent blood sugar issues that they are not aware of and are not looking for. Remember I used to eat bowls of pasta without having to work out how much sugar there was in it. The bad stuff flows from your kidneys through your penis. Now we have a new study that reveals that diabetics expel thiamine at a rate much much higher than the rest of the population. 15 times as much. So diabetics have a much higher rate of peyronies and they get rid of something useful 15 times as often. Hmmm. Diabetics with high blood sugar need to pee a lot more often than others. It's because your cells heat up, your body heats up, you get thirsty, you drink, you pee. You get rid of lots of useful nutrients and minerals. That seems to include Thiamine B1 to me. This study has only been published. It would be interesting to find out if the patients in the study had ED and whether this helped. I will follow up on that one, don't worry.

Ok, I've overtyped this  I'm tired now. I know there is no medical evidence here, merely a mosaic theory with an unlikely savior. But the theory ties up a lot of loose ends that I have been reading on this forum in my mind. There are several causes and effects that seem to be fairly connected. Whether having more thiamine does anything whatsoever to alleviate this is an entirely different thing, but still..

Just for the record, I went out and bought a pack of 300mg pills of Thiamine B1 yesterday. I will let you know if I see any improvement. I am not aware of anyone else doing this. It could all be barmy, it might just work. I hope it brings something new to the debate anyway. I think it probably chimes with some and not with others. Will gladly discuss any of this. I want to reiterate that there are a great many things that I do not understand at this point, but will elaborate on what I do know. Plus, seeing as I have an army of doctors at my disposal and I have absolutely no hang ups about discussing any of my varied problems with them, I can always ask them and find out!

Cheers

I think from a dietary perspective IF can help with the ongoing inflammation

Solver, Thanks for the post.

I think many here would agree on much of your basic premise.  Blood sugar is a suspected culprit for many reasons.  The mechanisms are not completely understood however and I don't think the answer is a simplistic one.  The one area I personally disagree with is the notion that the effect on the penis has anything to do with transport and deposit by way of urine through the urethra.  While the urethra has a close proximity to the penile tissue it is furthest removed in the penis from the tissue most frequently affected. I do not think the river bank analogy holds water  (couldn't resist the pun). :)

I am pretty sure that the culprit is the chemistry of the blood that nourishes the penis, eyes, kidneys, heart, etc. and that the transport is the arterial flow of blood to the penis (and the lack of of blood flow).  While your post was well thought out and quite good on deductive reasoning for a single person, some of these thoughts are not new to the forum.

There are many things you may find interesting.  here are two.

https://www.peyroniesforum.net/index.php/topic,65.0.html (read the thread and click on the link in the first post in the thread of this topic)

This may seem a bit less relevant to your post but still interesting.
https://www.peyroniesforum.net/index.php/topic,130.0.html

Solver,  I believe that you are on to precisely one half of the problem.  I assert that Peyronie's, along with a number of other chronic diseases, is the product of a confluence of two root issues.

1)  SUGAR!  Sugar is indeed a HUGE problem.  EVERYTHING in the contemporary food chain is laced with it.  The absolute maximum safe level of sugar consumption is 15g per day.  We all need a certain level of fruit and vegetable intake daily.  Fruits and vegetables contain sugar.  That alone is nearly enough to fill the 15g per day allotment.  On top of this we all need an adequate amount of carbs.  But most carbs we find in the grocery store are UNNATURALLY laced with sugar.  And then there are the "healthy" non-carb foods like yogurt.  Check the label!  Loaded with sugar.  And this doesn't even take into account things like potatoes that contain a lot of starch that quickly converts to sugar in the body.  And add to that the record levels of sweetened beverages that people are consuming these days.  Our bodies become overloaded with sugar.  Our visceral omental fat proliferates.  And our bodies are poisoned as the ever enlarging omentum pumps out toxins.  The damage from sugar is EPIDEMIC in our world today!  Type 1 diabetes occurs because the Pancreas is no longer able to produce insulin.  Type 2 diabetes occurs because the Pancreas is no longer able to make EFFECTIVE insulin.  For the best low down on sugar, and what it is doing to your body, see the jorge cruise website (http://www.jorgecruise.com) and download the FREE "Belly Fat Cure".  Sugar is without a doubt a major Peyronie's factor.  I am personally following through on the sugar issue on a long term basis.  Since contracting Peyronie's four years ago, I have been attacking sugar and have lowered my weight from 195lbs to 155lbs.  I am now planning to target the 15g level and bring my weight down to as close to 135lbs as possible.

2)  Vitamin D.  I am equally convinced that vitamin D deficiency is the second major contributor to Peyronie's.  Surveys are finding fully 50% of the population deficient in terms of older guidelines that are now being exposed as being way to low.  This would indicate that the vast majority of the population is perilously deficient in vitamin D.  It is vitamin D that is key to preventing autoimmune reactions and this is the very thing that too much sugar promotes.  These two factors are driving in push-pull fashion the current epidemic of chronic disease.  Optimal blood levels of vitamin D are 50ng/ml.  Allowing blood levels to go below that point puts your health at risk.  For more information on this read:  Vitamin D Experts' "Call to Action" (http://www.prohealth.com/library/showArticle.cfm?libid=14114), Low Vitamin D Levels Pose a Large Threat to Health (http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html) and Healthcare Professionals Ignore Vitamin D Deficiency Epidemic (http://www.medicalnewstoday.com/articles/24941.php).  Vitamin D affects hormones and genetics, lack of it has dire effects on health.  Some studies are indicating that it take fully five years of optimal levels to complete DNA repair after a long term deficiency.  A few months ago, after contracting yet another autoimmune related problem, I began to really dig into the vitamin D issue and radically increased my intake of vitamin D.  I got myself screened for serum calcium problems that can sometimes complicate higher vitamin D intake.  And I began to make use of regular exposure to UVB light to further increase vitamin D levels.  All this is paying off for me in achieving months of systematic regression of Peyronie's symptoms.

Before discovering the vitamin D issue, I was taking LOTS of vitamin B1 in the form of Benfotiamine and getting nowhere.  I suspect the problem is that if your body is unnaturally dumping B1, just consuming more of it is only going to result in your body dumping more of it out.  The vitamin B1 problem is not the root of the problem, but just a link in the chain.  When the sugar and vitamin D issues are brought into balance, I suspect the vitamin B1 issue will work itself out on its own.  That notwithstanding, I do confess that I am currently taking a daily B-100 complex supplement.  And of course, as most around here know, I am also taking Pentoxifylline which I believe to be the number one Peyronie's oral treatment available today.  - George

George,

Could you be more specific as to how your symptoms are regressing since you started your Vitamin D supplementation?  Less pain?  Less plaque?  Less Bend?

I too am trying to keep my sugar intake below 15g.  Not soo easy.  Even an orange has 17g!

Thanks!

I intuitively find it difficult to believe that we are not intended to eat fruit.  To do so deprives the body of some of the most critical antioxidants necessary for good health.  I think the key is more buffering reasonable sugar intake with proteins and good fats.  You do this by preceding the sugar with the fats and proteins that slow its absorptions and reduces any sugar or insulin spikes. Are oranges and bananas dropped on an empty stomach bad?  Probably.

Are oranges and berries bad in general?  Doubtful!

As with everything else, the problem is not fruit, the problem is the amount and the type of fruit.  Some fruit contains far more free sugar than others and must be consumed in moderation.  I used to believe as Hawk does, but now I have doubts.  Previously I have buffered not only with proteins and fats, but also with more exotic stuff like cinnamon and banaba.  Fruits have BOTH buffered sugars in the form of complex carbs AND free sugars in the form of fructose.  I am now practicing the 15g guideline to the best of my ability and my belly is shrinking as a result.  There is sufficient research out there to demonstrate a direct link between circumference of the belly at the waist and levels of systemic inflammation.  Indeed it is not easy to achieve the 15g target, but I have confidence that the closer I can get to it, the more dividends it will pay both in terms of Peyronie's and in terms of overall health.  And to be more specific, with the sugar strategy, vitamin D and Pentox, I have had zero pain, steadily shrinking nodules and some perceived straightening.  The bigger thing for me is that this is the first time in over four years that I have achieved an uninterrupted positive progression for this duration of time.  Before the nodules would vary in size over days and even hours.  That is not happening any more.  My penis is becoming steadily softer and more supple.  For me this has been a major achievement and one that I wanted to share.  - George

PS -  A major problem we have, especially in America, is to recognize what a serving size is.  Serving sizes are VERY small.  Most Americans typically eat triple and quadruple servings of everything and aren't even aware of it.

Well the skeptic in me rises again.  Regardless of your creation view, man or at least the society he lived in, evolved eating fruits.  When they were ripe, they ate them in quantities, often with no fats or proteins in the same sitting.

I probably consumed less sugar than about 85% of the population and less unbuffered sugar than 95% of the population when I developed Peyronies Disease.  If sugar is a major causative factor in Peyronies Disease we would see the bulk of the population with Peyronies Disease.  There is a huge difference in saying typical quantities of unbuffered sugar is not good for the body and may aggravate Peyronies Disease and suggesting the equivalent of 2 servings of fruit in a day exceeds the sugar intake a person should have.

In the same sense that injury is not a cause of Peyronies Disease but rather a trigger if other conditions are present, no one can produce evidence sugar is a cause of Peyronies Disease.  To the contrary, the rampant sugar intake and the limited Peyronies Disease incidence suggest the opposite.  The fact that many men other than me have developed Peyronies Disease who are far below the norm in sugar intake adds even more weight to this opposite view.

There are many men with ripped abs that make a point to consume significant sugar in connection with workouts just like many lean runners that train based on carbo-loading.  Most of those carbs would not qualify as complex locked sugars.

I think the suggestion that a normal person needs anything like <15 g of sugar a day is radical and unsupported.

you have to remember that fruits were not present everyday for man to consume. they were consumed on occasion. I myself like to consume berries and other low sugar fruits. The antioxidants in the fruit can be obtained through high quality extracts mnus all the unnecessary sugar. As for athletes its a different story.

Hawk,  All I can say is that the formula at this point is working exceptionally well for me.  As long as it continues to work, I will stay with it.  I think we all need to do whatever is working for us.  That might not be the same thing for every person.  But one thing I can tell you is our society today is so sick that health care is in a crisis.  Only a few get Peyronie's, others get other chronic maladies.  Why?  Because we are all different genetically and thus vulnerable to different issues.  There is no doubt in my mind that sugar is a prime reason for all the chronic sickness people are experiencing.  I certainly agree that 15g is hard to achieve, but thats my target.  And I have no doubt that I can get plenty of antioxidants in the process.  And remember, primitive peoples that eat large quantities of fruits generally don't have long life expectancies.  I suspect that the more active your lifestyle is, the more your tolerance for sugar will be.  I also suspect that getting larger quantities of sugar on occasional days is not going to be a huge issue.  But my point is that <15g is safe, >15g *may* be safe or may not be depending on the individual situation.  - George

for me its around 50g of carbohydrates per day and a carb refeed once every week. Through trial and error I've come to the conclusion that the GI is not of much relevance but overall carbohydrate intake is.

Hawk, I agree, there are too many moving parts. I think the overall thesis relating to blood sugar has some merit. Diabetes issues all stem from blood sugar problems, the incidence of peyronies is higher in diabetics. I know this does not mean cause & effect. I dont understand many of the mechanisms in the body, hoping to learn. However, I dont follow your point on the urethra. From wiki: "In anatomy, the urethra is a tube which connects the urinary bladder to the outside of the body. The urethra has an excretory function in both sexes to pass urine to the outside, and also a reproductive function in the male, as a passage for semen." That to me is a clear a link as you can see. I don't really see the issue that it is further down the line.


George I'm with you up to a point. We agree on excess sugar being bad for you in general. I'm not sure about your take on fruit though. We need a varied diet so I agree with Hawk on that.  Where do you get the 15g from? Could be interesting to see.

The thing is, it is not the carbs/sugar in fruit that bother me. It is in other foodstuffs. For example, white bread, cereal pasta have extremely high levels. This is where the real damage is being done, not the fruits.

Excess carbs mean excess sugar. Bottom line for me on all of this, is that high blood sugars are creating issues for our cardiovascular & immune system. For whatever reasons, diabetics excrete an excess of the serum albumin and this is because there is insufficient thiamine/B1 in diabetics . This information is new e.g. this month http://www.naturalnews.com/025136.html

"Thiamin is one of only four nutrients associated with a pandemic human deficiency disease. It is essential for neural function and carbohydrate metabolism." So my extremely simplistic take: Dont exrete excess albumin (I bet it has a lot to do with excess sugars), take thiamine. Help with other disorders. That's about it

It will help if you learn to use the quote feature effectively.  If you go to your post where I changed the format of quote and click on the "modify" button you can see how I did that.  You can also use the "Quote" button on other members posts then trim the quote down so you do not quote an entire post, only the key part.  This issues are key when trying to follow a huge long post.  You will also find you will get more response if you divide posts into subjects and keep them much shorter.  many members will not even read long posts.

Actually, I am not diabetic and never have been.  I have had issues with uncontrollable hypertension and dealing with sugar plus key supplements has totally solved that problem.  In fact, I went from three prescription BP meds to no BP meds in no time and was off BP meds completely for a full year before my BP started to rise again and I am now back on a small dose.  I am hoping that moving to the 15g limit is going to solve that issue for good along with benefiting the Peyronie's problem and other issues.   The 15g limit is actually a recommendation of Jorge Cruise, a professional trainer and associate of Dr Oz.  He has had extreme success with it in dealing with people with major health and weight problems and I believe he is really on to something.  As for carbs, I am NOT limiting carbs and don't believe at this point that carbs are the problem.  I eat lots of bread and cereals but just make sure they have zero sugar per serving.  In fact, the amount of fruit I have cut back, I have replaced with cereal and bread products.  But these have to be 100% whole grain with zero sugar.  Refined flour products are as bad as sugar.  In fact all processed grains are as bad as sugar.  My current take is that if I am overdoing sugar, it should at least be coming from fruits and vegetables since they at least contain a lot of essential nutrients.  On this point, I somewhat agree with Hawk.  As for Benfotiamine, I would agree that it is a good thing, but I would also be looking seriously at the head of the chain which is vitamin D.   I think to fully understand this approach one has to at least read Dr. Oz's You On a Diet and Jorge Cruise's material.  The central role of omental fat is a critical factor in poor health outcomes due to the toxic environment it fosters in the body.  I would certainly agree with Hawk that the 15g limit is radically low.  But I would also assert that much of the problem stems from the fact that we are just consuming far too much food and far too many total calories in our diet.  At that rate, 15g becomes impossible, but when you scale all of that back, 15g becomes more attainable.  All evidence to date indicates that fewer calories equals better health.  Sugar drives appetite which drives calorie intake.  Once one attacks free sugar consumption, calorie intake declines radically, and health outcomes improve radically.  People in America are not falling ill due to starvation, the opposite is true.  - George

Solver, in all due respect IMHO this is all a bunch of baseless speculation founded in little more than - "Maybe it could be therefore I think it is".  There is not a shed of indication that toxins or anything else permeates the urethra tube and migrate into the tissue.  In fact I am willing to go out on a limb and say it is known NOT to happen.  Otherwise our urine would filter right back into the body through the penile and prostate tissue.  As blood exchange pulled it back to the kidneys, they would again filter it out.  It would be a never ending cycle.

Analogies can be good for illustration but more often than not they compare two things that have no similarities or relationship to each other.  Water flowing down the banks of a river and urine flowing out a urethra have nothing in common that help us understand tissue contamination.  The bladder and urethra are made to transport contained impurities that the kidneys pulled from the blood.  Their walls are not made of permeable tissue that weeps impurities back into the body through penile tissue.

Welcome to the forum Alex and thanks for contributing with your post.  It is great to have you here with us.  By that I obviously mean we are glad we can support each other.  I am not glad that you share in this disorder.

Hawk

Solver,  I agree that there is a connection to of this, but the "River Bed" is not the urethra, its the blood stream which carries toxins all around the body just as it carries nutrients.  And it is both about what it carries (but shouldn't) AND what it doesn't carry (but should).  - George

Quote from: George999 on January 12, 2009, 11:52:02 AM
As for carbs, I am NOT limiting carbs and don't believe at this point that carbs are the problem.  I eat lots of bread and cereals but just make sure they have zero sugar per serving.  In fact, the amount of fruit I have cut back, I have replaced with cereal and bread products.  But these have to be 100% whole grain with zero sugar.  Refined flour products are as bad as sugar.  In fact all processed grains are as bad as sugar.

Maybe i'm all mixed up, but carbs are complex sugars. Sugars are simple sugars. High carbs are high sugars in my book. Very high sugars.

Quote from: Hawk on January 12, 2009, 12:03:12 PM
Solver, in all due respect IMHO this is all a bunch of baseless speculation founded in little more than - "Maybe it could be therefore I think it is". 

Correct as charged but all theories start of as maybe x + y = z. I dont mind being wrong at all. If its not right, and i'm sure it's not, i'll move on. It's still progress.

Quote from: Hawk on January 12, 2009, 12:03:12 PMThere is not a shed of indication that toxins or anything else permeates the urethra tube and migrate into the tissue.  In fact I am willing to go out on a limb and say it is known NOT to happen.  Otherwise our urine would filter right back into the body through the penile and prostate tissue.  As blood exchange pulled it back to the kidneys, they would again filter it out.  It would be a never ending cycle.  Their walls are not made of permeable tissue that weeps impurities back into the body through penile tissue.

Despite being the object of affection of many a doctors, I sure as hell aint one. Help me out here a little. Are you 100% sure that the urethra is impermeable and there couldnt be deposits? I'm still taking the thiamine whatever the outcome.

I saw your tip and also edited my previous posts. Point taken.

Quote from: The solver on January 13, 2009, 03:22:48 AMMaybe i'm all mixed up, but carbs are complex sugars. Sugars are simple sugars. High carbs are high sugars in my book. Very high sugars.

I'm taking my cues on this from Jorge Cruise who is endorsed by Dr Mehmet Oz who is professor and vice-chairman of surgery at Columbia University and Director of the Heart Institute at New York Presbyterian/Columbia Medical Center.  And I am pretty much convinced that they know what they are talking about on the differentiation of complex carbs and simple sugars and how complex carbs are very healthy and sugars very unhealthy.  AND they have plenty of success stories to re-enforce their theories.  - George

Quote from: George999 on January 13, 2009, 07:14:43 PM
complex carbs are very healthy and sugars very unhealthy.

His approach is a good one, just like The Abs Diet. Smaller meals, more often, backed up by some fat burning anaerobic exercise. All good. You should eat carbs (and fruit), but they are both sugars. An excess is unhealthy, but you should still have carbs and fruit as part of a balanced diet. Bottom line is carbs = sugar

e.g. http://diabetes.about.com/od/carbohydratefaq/Carbohydrates_and_Diabetes_FAQ.htm

"When you eat carbohydrates, either simple or complex, your body breaks them down into sugars, which are absorbed into the bloodstream."

Bottom line is that your body depends on 100% sugar (glucose) for its energy and nothing else !

Excess macro nutrients such as carbs, protein, and fat are stored for the most part as fat.  Some may be stored short term as glycogen which is a more complex form of glucose.  Glucose is the body's fuel.  When the body needs energy (which is every second it is alive) it draws on blood glucose.  It usually then draws on glycogen which it can quickly convert to usable glucose.  It then starts converting fat (which came from carbs, fat, and protein) to glucose.  It does not burn fat directly.  About half of the energy a cell uses is just to get this fuel and other elements back and forth across the cell membrane.

If you are not using your muscles and the body senses a calorie plummet, it will try to save the stored fat and instean break your muscles down into burnable glucose.

There are problems with too much stored fat -  It crowds organs and it deposits fat in arteries, etc.
There are problems with quickly flooding the blood stream with glucose - It triggers insulin which prevents the breakdown of stored fat into usable glucose.

There is a problem with low blood glucose - the cells (brain, heart, nerves, muscles) cannot work properly.

The preponderance of evidence does not indicate there is a problem with steadily proving a slow release of glucose into the blood from any source.  It is necessary.  The key is the rate of release of sugar (glucose) not sugar vs something else.  There is nothing else.  That is why, complex carbs are fine, because they convert to glucose slowly.  That is why some sugar is fine if buffered with protein and fat, because it slows down the delivery of the sugar to the blood stream.  That is why burning fat is good, because it slowly converts to glucose and slowly puts sugar into the blood stream.

Nature combined many of the most essential antioxidants essential to health with the sugars in fruit.  A philosophy that says a normal body system must avoid these or make draconian efforts to restrict them is considered radical in well educated nutritional circles.  It risks perils of cancer and innumerable other diseases.  Few people that study this could conclude that we should eliminate these things and think we can get these components from a pill. 

Whole, diverse (vegtables, grains, fruits, etc), unprocessed foods remains the best choice for health.

Carbs do NOT equal sugars.  There is a huge difference.  Complex carbs are broken down by the body slowly and do NOT result in insulin spikes.  Insulin spikes result in a bad chain of changes in the metabolism.  Simple sugars DO result in insulin spikes whether the sugar in question comes from the sugar bowl or free fructose in fruit.  No amount of external fiber, protein or fat can buffer it.  If you had read through the material you would have picked up on this point.  More and more attention is currently being given to damage done by dynamic blood sugar levels since experts now realize that the old dependence on fasting levels is simply not working.  And, in fact, the program is promoting the exploitation of this concept to actually allow weight loss WITHOUT exercise AND without loss of muscle tissue.  And if you had actually read the material you would have been aware of that as well.  These guys are experts in their fields, they are not just spouting the time honored common wisdom.  - George

There are risks in any attempt to correct a physical condition whether it be from prescription drugs, supplements or lifestyle changes.  But anyone wanting to get better will be willing to take reasonable risks.  For example, we are now discovering that there is much benefit from curing vitamin D deficiencies.  But it is also becoming known that trying to correct vitamin D deficiencies can cause cancer in a few people.  AND we are now finding out the reason for that.  In some cases, being vitamin D deficient for a long period of time can actually result in damage to the vitamin D receptors on the cells.  I such cases, additional vitamin D may actually cause cancer to result rather than restoring health.  But life has risks.  You can just accept an accelerated decline in health, or deal with it and take a risk.  I prefer to take a risk.  - George

Quote from: George999 on January 14, 2009, 11:15:35 AM
Carbs do NOT equal sugars...   Complex carbs are broken down by the body slowly and do NOT result in insulin spikes...  Simple sugars DO result in insulin spikes whether the sugar in question comes from the sugar bowl or free fructose in fruit.  No amount of external fiber, protein or fat can buffer it.  If you had read through the material you would have picked up on this point. 

sheeeesshhh George I have read "through the material" on this topic.  :D  I am surprised that that you state an assumption that just because I disagree with you that I must have failed to pick up on the point becuse I didn't read the material.  Could it be that I have referenced that material and more that presents evidence of a contrary point of view?   I could retort that you would have picked up on the fact that I made the point of complex carbs feeding sugar to the blood more slowly if only you had read the material. 

Did you read? :

Quote from:  Hawk"The key is the rate of release of sugar (glucose) not sugar vs something else."

I find it astounding that it seems your current opinion is that no amount of simple sugar including fructose can be eaten by a normal person even when combined with other foods without causing detrimental insulin spikes.  After volumes of material, I do not think the preponderance of evidence supports such a radical interpretation of proper nutrition.  In fact, that is an extreme view in the eyes of the vast majority of nutritionists and scientists that have also availed themselves to a lot of material on this topic.

My point was that in this case I have weighed the evidence, personally tried the system, and concur with that vast majority.

Hawk, I would simply challenge anyone to read You On a Diet by Dr. Oz and Dr. Roizen and the Belly Fat Cure by Jorge Cruz and see what the experts say about the risks of simple sugars.  Certainly simple sugars should always be buffered. I make sure to do that myself.  But a buffered free sugar does not equal a complex carb.  And I, like Jorge Cruz, maintain that over 15g results in weight gain that one has to work increasingly harder to work off.  And I, like Dr. Oz, maintain that every inch you can take off your waist improves your health outcomes.  It is a known fact that people who practice calorie restriction have better health and live longer.  It works with rats AND it is known to work with people.  The problem is that bull force calorie restriction takes an enormous amount of dedication and discipline AND bull force calorie restriction DOES result in some degree of muscle loss and emaciation.  But the sugar method bypasses those problems by naturally lowering appetite and avoiding sugar conversion to fat in the body.  So we will simply disagree on this one.  - George

Maybe its too early to tell, but after a month of sugar restriction and a month in the gym, I havn't lost an ounce.  I do feel however that my peyronies is less active.

George,

Please indulge me and, give another point of view the respect of voicing legitimate thought-through questions and points.  I am not challenging your religion or attacking a family member, I just question your minority view on a nutrition point.  I might add, that neither of us have more then some diligent self-education on this topic.  I read lots of books, 99% are non-fiction.  I own books by Oz although not the one you mention.  I consider him an interesting author worthy of selling books and I value his opinion.  I find his theories interesting and very worthy of discussion.  I am not prepared to take his word against an army of conventional wisdom on any topic without sound clinical evidence. 

I have not read Jorge Cruz other than everything on his website including video clips.  I found him interesting but I found nothing that impressed me.  He may or may not be just another guy selling some plan or book.  I am still open on that point.

I have read several other authors on this topic from reputable body builders with 2% body fat at age 70, to trainers, to Medical doctors., and more than a few PHd's in nutrition.  NONE of them would ever support the concept that "fruit is your enemy" or a policy of drop the fruit swallow a pill.  I know enough about the antioxidents found in fruit, and the newly discovered phytonutrients and their benefit in everything from delaying Alzheimer's, preventing cancer, and too many other clinically established benefits to list.  You cannot have the necessary healthy intake of whole fruit with a radical 15 g sucrose/fructose limit a day.

You must admit that idea is radical and counter to all established mainstream thinking.

You must admit that the hard clinical evidence (not theory), that supports such an idea is at best flimsy and at worst non-existent.

I also ask for any clinical data that extreme calorie reduced diets prolong life or health.  There are a few anecdotal accounts but we have that for a thousand cures that don't work.  I have kept up on these theories including their research with worms and mice.  I know the data for humans is just not there.  It may be some day.  I tend to buy into that concept myself.  An honest discussion however demands that you acknowledge that it is NOT proven rather than risking a false impression to those than have not followed the data.

George I respect your tenacity, knowledge, commitment, and intelligence.  I do think at times you tend to sign on to the latest book you have read.  Your enthusiasm seems to give you the view that the books you read are the last word on topics with little clinical info.  One only has to hear a live hour-long debate by medical doctors on the Arnish diet Vs. the Atkins diet to realize that things just are not clear cut and conclusive.  It is premature to act like the debate is over based on a couple books.

Well, Hawk, you have your view of this and I have mine.  I'm just really happy at this point with the results I am getting and the speed at which I am getting them.  I just had a cholesterol test on Monday and got the results today.  I have forever had difficulty trying to get my cholesterol levels in order and after my last test, my doc threatened me with statins.  Today his jaw sort of dropped as he shared my results with me:

Total Cholesterol:  155
Triglyceride:  50
HDL:  43
LDL:  101

And thats with the fact that I have increased my intake of carbs AND I have not been exercising for the last nine months.  I find this pretty miraculous and it kind of reinforces what I believe.  Or perhaps its just a placebo?  AND I have NOT eliminated fruit from my diet and DO NOT recommend that anyone else do so.  Both fruit and vegetables contain some free sugar, especially fruit.  Limiting intake of them to a reasonable amount provides plenty of nutrition while avoiding sugar overload.  - George

NOTE:  My doctors did a blood panel on me precisely when I contracted Peyronie's and here are the results of that panel below.

Total Cholesterol:  225
Triglyceride:  84
HDL:  35
LDL:  142

The above numbers are from when I was exercising daily.  I really believe that Peyronie's is tied in directly with Metabolic Syndrome and only the advice of Dr Oz has been able to move these numbers.  And now Jorge Cruise's advice plus the vitamin D strategy is moving them down further.

George, I am sure you know I am sincerely happy with your results.  I am also not contending with low fat, or exercise.  With those changes and Pentox I would expect some improvement with Peyronies Disease as well.

My point is only with the point of radical sugar guidelines which had no impact on your cholesterol.  Contrary to what you said in your post you just cannot eat a reasonable or a healthy amount of fruit at that extreme restricted intake.  You well know that because you live it. One orange would be prohibited as would a single serving of blueberries.  Forget a few ounces of pomegranate or any other kind of juice.  You can never consider eating a single banana, and the list goes on.  Any of these would put you over for the entire day before you touched another morsel of food.

I guess we just agree to disagree on acceptable levels of sugar from whole fruit in a healthy diet.  I opt for moderation, and a wide variety of whole fruits, grains, vegetables, fish, and good fats along with moderate strength and aerobic exercise and plenty of rest.

I hope your progress continues.  You definitely work hard for your health.

Actually, I have probably increased my fat intake if anything.  That is what makes these numbers so amazing, even to me.  And the fact I achieved these numbers without exercise?  Perhaps what they have been telling us is wrong.  Perhaps it IS sugar and not fat or sedentary lifestyle that is the problem.  I really don't know how else to explain this.  For years I have tried so hard to achieve something anywhere near this, and now suddenly its there and all I have been doing over the last few weeks is radically restricting sugar and of course taking the vitamin D.  So for sure this has zero to do with fat intake or exercise.  I am planning to restart my exercise now that I have my neuropathy fixed (the neurologist was pretty amazed that I had pretty much diagnosed it and cured it myself before even seeing him), I am planning to restart my exercise, that should REALLY bring it down.  So this all boils down to either vitamin D or strict sugar limitation has done miracles for my cholesterol levels.  Its one or the other, or of course maybe a combination of both.  For me this is the real deal.  This stuff is really working for me no matter if the docs or others roll their eyes.  - George

Or maybe not!!!

My lame view on this is that our knowledge of Peyronies today is analogus to "the fever" back in the 1700's. The fever was thought to be the disease. Possibly Peyronies is not a disease, only a symptom of one or many other issues. Clearly the "Peyronies" described by many on this board is not the Peyronies that I have.

Life was just fine for me until 2001. A stress test taken prior to surgery (for 50 year olds) revealed some issues and an angiogram shortly thereafter revealed some artery blockage. Note, I was in great shape, never over weight, didn't like sugars and had run marathons. But I added even more discipline to my living by taking lipitor to bring my cholesterol to below 150. I also limited saturated fats and switched primarily to vegetables and red wine. Latest results are: cholesterol 125, LDL 65, HDL 50 and triglycerides 51.

I was personally introduced to Peyronies in 2005, when my diet was as good as I know how to make it. Now I did have some autoimmune issues -  see Our Histories, reply # 42.


Quote from My History
I have been diagnosed by an Arthritis Specialist as having DISH (diffuse idiopathic skeletal hyperostosis). DISH (sometimes called Forestier's disease) is considered a form of degenerative arthritis and is characterized by excessive bone growth along the sides of the vertebrae of the spine. It is also associated with inflammation and calcification (bone growth) at other areas of the body where tendons and ligaments attach to bone, such as at the elbow, knee and the heel of the foot. These can lead to bone spurs. Heel spurs, for example, are common among people with DISH. I have all of these.

My belief is that the problematic autoimmune that contributes to Peyronies is related to that which contributes to DISH. I take NSAID's for the arthritis. I hear they're also good for Peyronies.
End Quote


I don't take NSAID's anymore since the more recent negative results on them.

Peyronies for me came from careless sex.  But with me it didn't heal. Basically, bad DNA I guess. There is no need for evolution to purge those of us with Peyronies. Has Peyronies ever stopped breeding? I don't think so.

So Hawk, George999, Solver and others have great insights and I read them all and practice as many as make sense to me but I think we're a long way from a cure and I still see Peyronies as a symptom of something else rather than a disease.

And that is why this forum is the absolute best thing out there for this friggin disease or what-ever it is.

Read "Good Calories, Bad Calories". The data on fat intake vis-a-vis heart disease is actually minimal. The overall calorie intake, fiber, exercise and other factors may be more important.

Another interesting thing... lowering cholesterol does not confer much improvement in length of life - perhaps 1-4 months per person, if they keep to a diet throughout their entire life. Fascinating book, mostly about how dogma becomes dogma.

Tim

Tim,  There is actually some pretty substantial agreement at the research level that there are other superior measures of stroke and heart disease risk compared with cholesterol numbers.  But cholesterol was easy to measure and quantify and the medical establishment jumped on it and hangs on to it like a bulldog.  I had an aunt who had cholesterol levels WAY out of range from the time she was middle aged.  She never had either stroke or heart disease issues and was actually very healthy until she passed away in her late eighties from cancer.  Don't get me wrong.  I do think that cholesterol numbers are important.  I just don't think they are the be all and end all that most medical professionals make them out to be.  Its really frustrating.  Its like a mindless treatment mill.  In a similar vein, the doctor prescribed Fosomax for my wife due to osteoporosis issues.  Hidden in the fine print of the accompanying literature is the admonition to check each patient for vitamin D deficiency before prescribing this drug.  Did my wife's doctor check for vitamin D deficiency.  Absolutely.  She looked my wife over and decided she obviously wasn't vitamin D deficient.  Help me!  I want to scream!  - George

My mother had cholesterol levels of over 300.  long story short... Several years ago she had a angiogram. She was 78 years old at the time.  The cardiologist said" she literally has the arteries of a 16 year old".  When I expressed surprise and mentioned her cholesterol he just shrugged and said "my cholesterol has always been around 160 and I had a heart attack at 45.  There is a lot more to it than cholesterol and there is a lot we don't know."

I think its more to do with the underlying inflammation. VAP cholesterol and CRP would be good tests to look at in my opinion.

http://heartscanblog.blogspot.com/search/label/HDL

Hi all,

Today after 2 years of messing around why I got peyronies and Venous leak, I finally have the answer. I was on minixodil 5% solution for around 9 months. This drug is similar to Propecia has for certain unlucky dudes like me has same side effects. On top of being on 5% soln, it had DMSO which would have spread that in my blood stream. The worst part is its more or less irreversible...
Is thr anybody on this board who has peyronies from propecia/minixodil useage. I am sure it messed up my hormones and left me limp at 25. I may try to get all my hormones back on track but the recovery path is still bleak as I read on propecia board. Just a note for everyone Saw Pallemento is very similar to Propecia...so read all the side effects before taking SP. I last month took SP also for a week thinking, my condition cud be prostatis a big big mistake ...

I, too, believe that I developed Peyronies Disease from propecia use. I used propecia for two weeks only - I used Minoxodil for about two months. I hadn't thought minoxodil would have caused Peyronies Disease -- you apply it on your head, for starters, and although I discontinued it's use because it wasn't doing much for me aside from causing me a facial tic -- but it's a possibility

All the "medical studies" don't let you know that this hairloss medicine that curbs TGF-Beta I could be detrimental to your penis, though there are studies that show in the rat model that propecia does just that. Minoxodil doesn't use DMSO as a delivery agent - it uses MSM, a less powerful compound. I doubt the MSM itself has anything to do with it, personally. It was IMO the propecia.

The best thing you can do it start taking supplements and, most importantly, realize that your hair isn't what makes you a man, or attractive. A lot of companies are hurting people because of the vanity that those companies instill into us (especially those in our 20's) that states that how "cool" or desirable we look is the be-all end all. Go natural, and shave it off! Girls like confidence, not hair.

Hi Ocelot,

The soln I was using had DMSO. It would have lead the minixodil to be absorbed better in my blood stream hence the side effects. Now days if you search minixodil in google cetain sites include partial or complete impotence as side effect...

About the hair thing.. heck i have forgotten it already.. its more abt my lil mem which is nt working like it shoulld be for a guy in his 20's and heck I have to correct that  ???

The following was posted under another topic by BOND007 but caught my attention. I know there are many posts on this forum about what happens at a metabolic level to cause Peyronies. But there is the line of thinking that one of the causes is trauma induced to the Tunica. And I've read where there seems to be some unscientific data to suggest that there seems to be some corollary of men with Peyronies and heart disease. The primary factor here being the medicines used to treat high blood pressure, particularly beta blockers. The theory goes that being on these medicines can make it harder to achieve a full erection. I know I had problems when first but on high blood pressure meds years ago. It is always a balance to work with my doctor to get a sufficient dose of the medicine, but yet not too much as to impede a good erection. The compromise being achieving an erection, but not as firm or hard as it used to be. And that in this "less than hard" state that we are more susceptible to trauma during sex. So I see this post as another, yet unscientific piece of data that supports the theory.

Quote50 years old and have a stent in my heart otherwise great condition.  I am taking several meds for my heart, Plavix, lipitor, niaspan, lisinopril, low dose asprin.

Hi all. I am newly diagnosed with Peyronies Disease. I am also Type II diabetic. Is there a link between the two conditions? I have also had bouts of plantar fasciitis and prostatitis over the last five years. Is there any link here??? :(

Quote from: bertie67 on March 11, 2009, 05:13:14 PM
Hi all. I am newly diagnosed with Peyronies Disease. I am also Type II diabetic. Is there a link between the two conditions? I have also had bouts of plantar fasciitis and prostatitis over the last five years. Is there any link here??? :(

Yes, yes, and no (sort of).  The same things that cause diabetes and plantar fasciitis also cause Peyronie's, namely autoimmune processes.  On the other hand, prostititis is more remotely connected in that it is associated with immune system malfunction, but not autoimmune syndrome.  - George

My doc says that my Peyronies Disease is not the result of my taking Trimix and that it was just a coincidence that Peyronies Disease presented by my third injection.  I see on the prostate cancer forum that there are many guys using Trimix without any trouble.  Does anyone know of any research into a possible connection between Peyronies Disease and Trimix use? 

Greg

None of these drugs actually CAUSE Peyronie's.  The cause of Peyronie's is metabolic.  IF you have this metabolic problem, ANY trauma to the penis from physical injury to certain drugs can trigger Peyronie's because your body no longer has the capability for your penis to heal normally.  - George

Gregory

Trimix is an off label use of three drugs and is not FDA approved.

If you research PGE1, Carvaject or Edex that is used in trimix you will see the warning that injections in the penis can cause the penis to bend.

In my case trimix caused corporal fibrosis and made my condition worse.

Jackp

George --

You say that because of the metabolic problems, that your body is incapable of healing the penis after trauma, but is it that severe? I imagine it's a diminished capacity for healing, or specific instances of "failed" healing that trigger a cascade of fibrosis and irregular healing.

If the penis could no longer heal, wouldn't any sexual contact make it worse? There has to be SOME healing taking place, the sort of 'general maintenance' healing that occurs on your entire body due to everyday stress. If not, I imagine our members would all harden completely into one large scar.

Am I wrong in this assumption? Because if the thinking is that healing is forever "broken", it ignores the fact that there was a point in our lives where our metabolism allowed correct healing, and thus should be able to be corrected to it's normal range (i.e. Type II Diabetics managing their insulin levels with diet and exercise after making the whole system go awry in the first place). I also find it hard to believe that NO healing is taking place, because I've jammed my member a few times during sex/masturbation since developing Peyronies Disease, and each instance did not result in new fibrosis (although I am taking Pentox now, which is affecting it I'm sure).

Quote from: George999 on March 12, 2009, 10:23:10 AM
None of these drugs actually CAUSE Peyronie's.  The cause of Peyronie's is metabolic.  IF you have this metabolic problem, ANY trauma to the penis from physical injury to certain drugs can trigger Peyronie's...

George,

I hear what you are saying but the evidence is strong that it is more than the needle trauma.  Specifically, Papaverine, one of the drugs used in both bimix and trimix has a higher incidence of causing fibrosis than prostaglandin E1 (PGE1) (or alprostadi).  Some even argue that the the (PGE1) or alprostadi that is added to Trimix is possibly antifibrotic.

Caverject uses - prostaglandin E1 (PGE1) or alprostadi
Bimix combines papaverine and phentolamine
Trimix adds prostaglandin E1 (PGE1) or alprostadi to the 2 bimix drugs

Hawk,  I am sorry,  I didn't state it very clearly.  I meant to say physical OR CHEMICAL trauma.  Chemical trauma being from any number of drugs via differing pathways ie actual direct irritation or indirect such as limiting blood flow.  My point is that this combination is used without problem by a number of people.  One needs to be susceptible in order for it to be a problem.  - George

Ocelot,  Peyronie's is a progressive, degenerative disease.  This means that without external intervention (ie Pentox, etc), it will get progressively worse.  A second trauma may not result in additional scarring because either it is not severe enough or it is being prevented from progressing by external intervention (Pentox).  We know that Pentox interferes with the chemistry of Peyronie's and does indeed allow some degree of physical healing while at least stopping progression.  My remark about physical healing being impossible assumes no Pentox or other intervention.  In the case of Diabetes, it WILL indeed get worse without external intervention.  - George

Jack,  Remember that Corporal Fibrosis is exactly the same process as Peyronie's.  It just affects a different part of the penile structure.  And, in fact, Pentox is used to treat Corporal Fibrosis as well as Peyronie's.

The real key to solving Peyronie's is to understand that it is caused by an underlying metabolic problem and taking steps to resolve that underlying metabolic problem.   Much emerging evidence demonstrates that Vitamin D is a key player in that equation although at this point we don't know if there are other major factors involved or what they might be.  But across the board Vitamin D deficiency is being strongly associated with fibrosis and degenerative diseases and, in some cases, Vitamin D repletion is being associated with reducing the effects of those diseases or even curing them.  - George

Ocelot posed an excellent question about healing.  The ability to heal cannot be totally gone from the penis.  Cell regeneration happens daily.  The fact is that Peyronies Disease is very much similar to keloids and hypertrophic scaring on other parts of the body.  Are keloids an absence of healing?  Is scaring an absence of healing or in fact is it the healing process gone awry? A person with keloids does not keep an open wound.  They start rapid healing with an over abundance of scar tissue that even over runs healthy tissue.

The attached picture shows scar tissue gone awry from nothing more than some infected hair follicles.  The scars way over ran the healthy tissue far from the site of injury.  These keloid cells also seem to not experience normal cell death.  All of these things are CLUES but they are not an exact correlation.  It is also not exact to say that something that treats Peyronies Disease will necessarily cause general immune suppression.  Something that does cause general immune suppression could benefit Peyronies Disease.  The truth is we are lay people not cellular biologists on a research team.

We must be careful stating what is a fact and what seems like a likely possibility.

Hawk,  I think we have a different definition of healing.  To me healing means that things become as they were at the beginning.  I would not conclude that scarred tissue has "healed", in fact I would conclude that it has not.  And while there are many approaches that are helpful in the case of Peyronie's, the fact remains that it is an autoimmune process at its roots with T-reg cells releasing TGF-beta1 inappropriately and only suppressing that process will stop in with certainty.  And suppressing that process is going to compromise the immune system to some degree which is what is happening with ComeBack.  - George

Quote from: George999 on March 12, 2009, 10:09:41 PM
Hawk,  I think we have a different definition of healing.  To me healing means that things become as they were at the beginning.  I would not conclude that scarred tissue has "healed", in fact I would conclude that it has not. 

George, I understand your point but I find that to be a confusing unscientific definition.  If I apply that I would have to conclude that my appendectomy incision from 1985 has not yet healed.

We need a better working definition than that.

Quote from: Hawk on March 13, 2009, 09:56:44 AM

Quote from: George999 on March 12, 2009, 10:09:41 PM
Hawk,  I think we have a different definition of healing.  To me healing means that things become as they were at the beginning.  I would not conclude that scarred tissue has "healed", in fact I would conclude that it has not. 

George, I understand your point but I find that to be a confusing unscientific definition.  If I apply that I would have to conclude that my appendectomy incision from 1985 has not yet healed.

We need a better working definition than that.

Then the problem becomes what do you do when the scar tissue in question is deadly?  For example, people die from an accumulation of scar tissue in their liver.  Do we declare them as healed because we accept scar tissue as a normal part of healing?  I think we accept scar tissue on our skin because its negative affect is only cosmetic.  But when we start to apply that to other organs it become problematic.  I don't think we can tell Ocelot or anyone else that they are "healing" when scar tissue is, in fact, accumulating in their TA.  I think that, in fact, represents disease progression, NOT healing.  - George

By the same token George you cannot say the penis has lost its ability to heal.  If that were so open tears or wounds on the tunica or elsewhere would remain active, open wounds. That makes my point that this is being reduced to a far too simplistic discussion.

I remember a saying that all of the cells in your body are replaced in 7 years. Maybe that was BS, or quasi-science, but it makes sense - your cells have to divide for you to live. Arguably, the cells in your penis are doing this! I can press with my fingernail into the skin of my penis, see the red mark it leaves - that is damage, yes? A small amount, but on the smallest scale I've done some damage to the structure of my penis. If I had lost the ability to heal entirely, that would become a large scar/nodule like the ones so many of us have? (I know the damage would be on the skin, not the TA, of course, but in my mind the example is sound).

Not that we have the scientific means to discover this, but there has to be a reason why SOME trauma triggers Peyronies Disease, and other trauma does not. I'm not sure members to this site can honestly say "Every time I pulled too hard masturbating, 'popped out' during sex and jammed my penis, or had my penis contorted during sex in an unnatural way, I ALWAYS developed Peyronies Disease symptoms in the area affected". I know that if that were the case with me, I'd have nothing but a big lump of scar tissue.

Given my own experience I'm liable to say there's a metabolic reason, perhaps, or more likely androgens (as I beleive propecia made me androgen-deficient and thus unable to heal correctly in response to usual penile masturbatory trauma) that might be lowered in the body when the injury occurs, thus triggering the inflammation/fibrosis cascade.

ocelot556,

I tend to agree with you. While I find all the metabolic posts on this forum interesting, it doesn't explain why the body heals itself one way at one time, and a different way antother time. If my vitamin D levels, T-cells, or ABCDEFG cells were off, then I would agree that I would get repeated occurances of Peyronies Disease, and that simply is not the case with me. I agree all these things may be factors, but there seems to be too many variables in this Peyronies Disease equation.

I think of healing as the movement towards homeostasis (natural balance). The trip to homeostasis may not arrive (ie leaving a visible scar on the skin or on a chest xray) but a functional return is often successful.

Many illnesses fit a general model of something normal, gone awry. If you are driving down the road and inhale a bug, the bronchial tube constricts, mucus floods around the bug and slimes it up, white cells migrate in for good measure, and you cough the mess out. That is a normal protective mechanism. If you do it when you breathe just plain old air, we call it asthma.

So if we look at Peyronie's as healing from micro-tears that is gone awry (a very popular theory of why it happens) then the questions become different, like: why just there? Why not the skin, liver, lung etc? So the over-expressed and abundant wound healing response leading to scarring is a theory, but it leaves many questions unanswered, IMO.

Similarly, the implication that vitamin D is underlying this is supported (weakly, IMO) by a predilection for people in more Northern climes (less sunlight), and by noting a relationship between sub-optimal levels of D and a host of other illnesses that bear similarities to Peyronie's (but which are in fact different).

Although I know George tends to get excited about his new discoveries (a trait I like and which helps keep this board alive and lively), and we are debating vitamin D a lot lately, that does not mean that it is the only factor causing Peyronie's. Nor does it mean that George has forgotten that other factors play roles in the development of Peyronie's Disease.

Clearly, a genetic factor underlies the developing in some men but not others. Clearly, a rheumatologic (autoimmune process) causes the disease in others. Clearly, plain and simple trauma causes it in others. My hope is that someday, a comprehensive screening bloodwork panel will be done automatically in any man presenting with Peyronie's Disease, and they will quickly be sent to get the individualized plan of therapy which will leave them disease free. Right now we are like blind men stumbling around. I wish it was different.

Tim

Quote from: Tim468 on March 14, 2009, 09:32:28 AM
Although I know George tends to get excited about his new discoveries (a trait I like and which helps keep this board alive and lively), and we are debating vitamin D a lot lately, that does not mean that it is the only factor causing Peyronie's. Nor does it mean that George has forgotten that other factors play roles in the development of Peyronie's Disease.

Exactly!  I, in fact, strongly believe that there are plenty of people who are extremely deficient in vitamin D who can whack, stretch and twist their penis in every way known to man and not suffer any adverse effects.  Thats how genetics works.  But those same people, by the same token, might be extremely vulnerable to some pulmonary malady.  Its all a matter of genetics.  But overly genetics is something called epigenetics.  And this is where vitamin D comes into play.  Vitamin D is the body's genetic policeman that tries to set things in order when bad genes start imposing themselves.  And if its deficient, it exposes a vulnerability that might not otherwise appear.  - George

I am Type II diabetic. Is there a direct link with diabetes and Peyronies Disease? I  was diagnosed in 2005. I am NOT on any medication and all my regular blood tests indicate I have "it under control" via diet etc. Just how many folks who have Peyronies Disease also have Type II diabetes? Or I am just unlucky - twice! Thanks.???

Quote from: bertie67 on March 15, 2009, 09:33:41 AM
I am Type II diabetic. Is there a direct link with diabetes and Peyronies Disease? I  was diagnosed in 2005. I am NOT on any medication and all my regular blood tests indicate I have "it under control" via diet etc. Just how many folks who have Peyronies Disease also have Type II diabetes? Or I am just unlucky - twice! Thanks.???

Both Peyronie's and the typical health problems related to diabetes feature a process known as glycation which damages healthy tissue.  Diabetes is a known risk factor for Peyronie's.  In my thinking there is DEFINITELY a link.  The further you can get your blood sugar down by eliminating sugar and other sweeteners from your diet and achieving weight reduction, the less aggressive your Peyronie's is likely to be.  - George

George,

Your absolutely right, there is no doubt in my mind peyronies is correlated to the immune system.  For me when I started my aldara cream it took awhile to kick in.  When it did I had pins and needles poking me on my back type of feeling and my peyronies worsened slowly starting at this time.  My penis bent more each day, got harder, and shrunk, this immune system starting cream aldara seemed to fire up my immune system all over my body.  There is no doubt now pentox is helping my penis but allowed my skin virus to come back and "flare" up.  One thing is for sure, pentox does work.  Last time I took it for nine months and it gave me size back, softened my penis, and gave me straighter erections.  After I quit taking it nearly two years ago these results stayed!  But then slowly over time the bend, hardening and shortening came back.  This could be due to some kind of cell regeneration or as some doctors say cells in the body constantly replace themselves. 

This leads me to think if peyronies can ever be totally taken away?  Say you get a shot of xiaflex and it totally cures you.  But then your peyronies comes back slowly day by day over the course of two years.  Is this possible?   If it is, it either means you didn't get totally rid of every cell of scar tissue or fibrosis.  Or you did get rid of ever cell of scar tissue or fibrosis and now the body is attacking normal healthy tissue again.  But before I got hit by a soccer ball years ago, my body didn't just attack normal healthy tissue in my penis.  So therefore it only started doing this after there was an injury there, meaning it will only try to repair tissue if there is any damaged in the vicinity.....

Comebackid

here are some of these causes I have figured to cause some of the problems with this condition.

1. sleeping on your stomach. you get erections throughout the night. the weight of your body pushes down on the erection. it is not like sleeping on your back where the erection is free and doesnt have your body pushing down on it. when sleeping, especially in bed at night on your stomach you will get erections and depending on what you are thinking or dreaming your natural reaction will be to hump the bed. not only is your body weight against your erection but you are now grinding on it into your bed. that can cause scar tissue.

2. when kids are teenagers and they masterbate, they are usually in a hurry not to get caught. because of this you will be holding and stroking your penis in all kind of unnnatural ways to get it done in a hurry. you dont have up and down strokes but you might be holding if off the the side. when teenagers masterbate they are in a hurry and hold it and stroke it all kinds of ways because they are in a hurry.

3. not using lubrication. the wear and tear of no lubrication or lotion. you are holding and squeezing your penis and the probably cause scar tissue. when you use lotion or lubricant it is a lot easier on the penis. how would girls feel if they had sex without at least their natural lubrication for years. not good.

dude,

Those are interesting thoughts, particularly about position during sleep. But I would point out that MANY people sleep that way, or masturbate hurriedly, or do it without lubrication.

There must be something else that contributes to cause the disease in the individual who has the tendency to get this problem.

Tim

I had a similar thought the other day about sleeping. Essentially, sleeping like that will not create scar tissue in itself because your body is used to you sleeping in that fashion. But, if there was an injury, and you slept on your stomach, there would be stress on your nighttime erections, it being concentrated at the site of the issue. This would cause a disruption of the healing process, resulting in Peyronies Disease. But it is just a theory.

Interesting thoughts. I must admit that of late I have been trying of my back to avoid reducing bloodflow. Maybe it's a bit extreme, but if there is a balance to be tipped one way or the other, I'd rather do everything I can to ensure that I'm on the right end of the peyronies seesaw.

Hi everyone.  I'm not sure if this is the correct thread for my post, so feel free to move it to the appropriate section of need be.

I believe I have Peyronie's Disease and have for quite a while.  I'm 23, and can remember having a bent penis for many, many years.  I can't even remember what it looks like straight.  I'd say around the time I was 8 or 9 it was crooked.  Perhaps even earlier. 

I don't remember any trauma happening there, however I sleep on my stomach and very often wake up with an erection, causing it to bend forcefully under the weight of my body. 

I'm not very good with angles, but I'm guess it's roughly a 70 degree angle.  Not quite 90 degrees, but it bends in the middle to the left.  I've never had any pain there or ED (although with my last partner, I failed to keep an erection with her, but I rather put that down to the fact that I wasn't very attracted to her).  I never had problems with my longest girlfriend of 4 years. 

Now, I am a very laid back kind of guy.  I don't really care if a girl finds it unattractive or laughs at it.  I just brush it off the shoulder, because I find that most of the time the bend actually helps me in the sack to reach places I normally can't.  What I'm very worried about is that the bend will get worse (it's pretty much stayed the same over the past 15 or so years) and that eventually I will have to resolve to surgery and a smaller penis (I'm roughly 6" erect, so I don't think I could handle losing 1-2 inches). 

I read that in some cases it improves, other cases it gets worse and other cases it stays the same forever.  I'm guessing I'm the latter?  I've been reading these forums for a while and see how drugs are being tested, but we all know that it takes like 8 years before a drug goes through trials and is available to the public. 

I have no trouble visiting my doctor, as like I said I'm very laid back (I have no issue discussing genital problems and showing a doctor, pending they're male of course).  But I know what my GP will say - "there's not much you can do unless you want to get surgery", which at this stage I don't.

But I'm guess that many of the regulars on this forum have a very advanced knowledge of the disease.  Have you ever come across someone who has had it as long as me? 

calabreseboy - I admire your positive attitude concerning other peoples view of your penis. The psychological aspect is perhaps the most difficult to cope with, so you're dealing with that really well.

If this issue has been present since age 8, it's possible that you have a congenital curve, and not peyronies disease. In short that means that you may have been born with the curve. I don't want to simply assume that is the case though. You may have experienced an injury at a young age, and as such it's definitely worth booking an appointment with a urologist, for peace of mind if nothing else. If it is congentical, then the curve won't change (unless you do injure yourself at some stage due to the angle). If it is peyronies, it's encouraging that you state that the angle has never changed, as it means that the condition is stable in your case. Still, should it be peyronies (my hunch is that it isn't) you may want to start on VED therapy as there's a good chance this will really make a difference with the curve. There's also traction too, though in my view the VED is typically more convenient and there's less of a down side to it's use.

Can you link me to a thread/post explain VED therapy, what it entails etc.?

Quote from: calabreseboy on April 28, 2009, 08:09:15 PM
Can you link me to a thread/post explain VED therapy, what it entails etc.?

Here are the VED highlights: https://www.peyroniesforum.net/index.php/topic,439.0.html  It forms part of the 'newly diagnosed highlights board': https://www.peyroniesforum.net/index.php/board,18.0.html

Feel free to look into the therapy to gain a greater understanding of it, but your peyronie's status is far from certain at this time. If your condition is congenital I wouldn't be so eager for you to launch into using the VED. You should go see a urologist, preferably one with good knowledge of peyronies and that will clarfiy things for you. I can understand if you are embarrassed about doing so, but it really is the single most proactive step you can take at this time and you'll then be in a good position to weigh up the various options that relate to your specific case.

calabrese

If it is not broken, don't fix it.

You have a penis that works, and it has always been that way (bent). Probably congenital (means born with it). Fixing it means probably losing length, and possibly losing feeling.

Your choice.

We have debated if a VED or traction might help a congenital curvature, and some (like me) think it might. But those who try to enlarge the penis with traction do not report that it helps curves.

Tim

It is not just likely that you have a congenital curve rather than Peyronies Disease, it is almost certain!

Hi :(

Sometime around October last year (2008) I developed a localised pain in the area at the base of my penis inside the body, on the left hand side.  I then started to notice that my penis was tending to want to bend more to the left.  This occurs when flacid and is most noticable when semi erect but with a full erection it straightens out more, only pointing a little to the left and slightly rotated anticlockwise perhaps.  The base of the penis is a bit sore but I am still able to finish masturbating.  If I get an erection and pull it towards the right it is very sore at the left base area, whereas in the other direction it is comfortably anchored to my body.

My problems started earlier than this when I got what appeared to be a urinary tract infection in the summer 2006 but with negative urine test.  I then developed pain in my right testical several weeks later, a dull ache very similar to the pain I now have at the left side base of my penis, erectile dysfunction, weaker less pleasurable ejaculations.  The affected testical has also ascended 1/2 inch and is sitting in a vertical position instead of horizontal.  I was diagnosed with probable epididymitis (possible prostatitis) and prescribed various antibiotics.  Eventually out of desperation I tried Ciprofloxacin in the summer 2007 despite having previously had an adverse reaction to fluroquinolone antibiotics.  I took this drug for 3 weeks before stopping due to severe side effects, tendinopathy, visual impairment, gastritis.  I also developed a tightness in the connective tissue where the penis attaches to the body especially on the left side, so it would hurt if I stretched my penis.  I used to stretch my penis in the shower in the morning but had to stop this.  There was some pain at the root of the penis with erections but not so bad it prevented masturbation.  The pain eased up after a few months and for several months I forgot about it.  I think there was some tightness and loss of elasticity along the left side of the penis but nothing too bad and I hoped it would gradually heal as my body recovered from the fluroquinlone toxicity.  Then towards the end of the year my current problem happened, it appeared as a new localised pain at the root of the penis, it has had a variable course but is bad again at the moment.

I don't know what to do.  It is more difficult to get an erection now but I keep on wanting to to see if the problem is getting worse.  Should I stop masturbating, could this be making the problem worse?  Should I stretch the penis or not?  What nutritional supplements help?  I have tried Acetyl-L-Carnitine and this certainly helped with erectile function.  Eskimo 3 fish oil is also good.

Do you think I could have Peyronie's?  Do you think there could be a connection between taking the Ciprofloxacin and my penis problems?  Has anyone else here developed similar problems after taking fluroquinolone drugs?

Thank you so much.

Bob

Get on pentox ASAP if your completely healthy.  The way you describe your bend is like mine, the pentox has helped eliminate some of my curve when semi flaccid and makes my erection full, solid, and straight, it looks like its pumped up with a VED and solid.  The twist is what I have to, this is a real pain!

Comebackid

comebackkid  what does this mean??

The twist is what I have to, this is a real pain!

What does the twist mean?  I'm not exactly sure, but just guessing, it probably means we have scar tissue on the side of the penis that our penis bends towards, and that scar tissue probably wraps underneath or overtop the penis as well.  A doppler ultrasound would be helpful here to make a hypothesis and test it.  It could mean nothing, but I"d have to think it has everything to do with where the scar tissue is located.  No doubt about it, if you go the surgery route, the twist is more difficult to fix.  My twist is worse when I'm semi erect and then straightens out when erect more.  I've always had the twist, its annoying as hell!  The pentox seems to be making the tissue somewhat softer, but it still is hardened and still twists somewhat.  I know have a bucket of pentox, a full supply for six months into the future, and I'm going to get another prescription before the end of this month and make it a years supply.  I'll probably just stay on this until xiaflex comes out and some people say it works or doesnt.

You still taking the pentox? The latest price I got it at was $32 a month at walmart, thats three pills a day, anyone else find a better price?

Comebackid

Couldn't find either of these via search. Apologies if they have already been posted

QuotePeyronie's disease (Peyronies Disease) is characterized by an inflammatory response beneath the tunica albuginea with fibroblast proliferation forming a thickened fibrous plaque that may cause pain, penile curvature and erectile dysfunction. The progression of the Peyronies Disease plaque may eventually lead to calcification or ossification. Current therapeutic success is often unsatisfactory because of limited insight into disease mechanisms. Research has been hampered by the lack of a universally accepted animal model. We describe an animal model of spontaneous Peyronies Disease in tight skin (Tsk) mice, a C57Bl/6J subline that reproduces with age important features of the human disease (fibrous plaque formation, penile bending and areas of chondroid metaplasia with heterotopic ossification). Histological analysis demonstrated an evident structural disorganization of the tunica albuginea with excessive accumulation of type I collagen. At 12 months of age, fibrous plaques with areas of chondroid metaplasia and heterotopic ossification characterized Tsk penises. The up-regulation of hypoxia-inducible factor-1 (HIF-1) leads to an increased downstream expression of HIF-1 target genes, such as TGFbeta and iNOS. These factors, together with some PDGF family members, can cause collagen deposition in Tsk penises. They can also influence chondrocyte differentiation and heterotopic bone formation. In conclusion, hypoxia, HIF-1 and HIF-1 target genes appear to play an important role in the pathogenesis of Peyronies Disease in Tsk mice. This mouse model that is the first example of naturally occurring model of Peyronies Disease in laboratory animals may aid in the identification of signalling pathways crucial for Peyronies Disease and should facilitate the designing and testing of new therapeutic interventions.

-
http://www.ncbi.nlm.nih.gov/pubmed/18599338

Possibly useful insight into how peyronie's occurs in some people seemingly without any kind of dramatic of painful injury.

QuoteObjectivesTo investigate whether tissue expression of plasminogen activator inhibitor type 1 (PAI-1) is increased in the fibrotic plaque of human Peyronie's disease (Peyronies Disease). Increased tissue levels of PAI-1, an inhibitor of both fibrinolysis and collagenolysis, have been found in a variety of fibrotic conditions. Recently, it was reported that PAI-1 expression was also increased in the fibrotic plaque of an animal model of Peyronies Disease induced by the injection of fibrin into the tunica albuginea (TA) of the penis.

MethodsTissue (n = 10/group) and cells (n = 4/group) obtained from the penile TA plaque of patients with Peyronies Disease or from normal TA were subjected to RNA extraction and real-time reverse transcriptase-polymerase chain reaction. Tissues were also analyzed by immunohistochemistry (n = 8/group) for the detection of PAI-1 expression at the transcription and protein levels.

ResultsA significant 3.5-fold to 16-fold increase was found in both PAI-1 mRNA and protein levels in the human Peyronies Disease plaque and the respective fibroblast cultures compared with the normal non-Peyronies Disease TA.

ConclusionsThe observed increase in PAI-1 in the human Peyronies Disease plaque agrees with what has been observed in the rat and suggests that PAI-1 may be a key pro-fibrotic factor in the development of human Peyronies Disease.

- http://linkinghub.elsevier.com/retrieve/pii/S0090429505000828

Losing 10% weight can reduce levels significantly, as can exercise. Lots of info about modulators here: http://adipocyte.co.uk/PAI.htm though maybe in our case once these events have started to unfold it's too little too late? Most of us are already exercising and eating well as it is, but it does press the importance of those activities.

QuoteI've always had the twist, its annoying as hell!

Comebackid,
You have always had the twist since when??  Birth?

As a newly diagnosed member (excuse the pun) I was curious to know if taking collagen supplements could have been a contributing factor to the development of Peyronie's? I have been taking Collagen as a supplement for about 3 months to aid healing of a long term Achilles tendon problem, I first noticed "the Lump" about a month ago. Having read about Collagenase treatment for Peyronie's which actually reduces collagen levels got me wondering if the supplements I was taking may have caused the problem. Any comments would be appreciated.

Hi,

I would like to know the same thing.  There is some anecdotal evidence that glucosamine, a collagen building supplement, can in some cases hasten the onset of Peyronie's, and that if it is discontinued symptoms will improve.  May I ask what caused your tendon problem?  I developed tendon problems after taking the Fluroquinolone antibiotic Ciprofloxacin two years ago.  My side effects started when I was taking the drug, but onset can sometimes be gradual and may be delayed by many months.  This class of drugs is known to destroy collagen and inhibit collagen synthesis.

The Ciprofloxacin also caused pain in the connective tissue at the base of the penis, worse on the left hand side where there was also an associated tightness and loss of elasticity.  I thought this was probably primarily damage to the suspensory ligaments, certainly on the right hand side.  It gradually improved so that on the right there was no pain.  However, at the end of 2008, over a year after the course of Ciprofloxacin I developed a new onset pain similar to epididymitis in the same region, at the base of the penis on the left.  This is when I really started to notice my penis curving more to the left as written in previous posts.  This may or may not be significant, but in October 2008 I took a nutritional supplement containing BioCell Collagen for 2 to 4 weeks to improve my joint and tendon health.  I can appreciate the hypothesis that this may cause increased collagen deposition in injured tissue resulting in scar tissue formation, but in relation to my personal case I don't think it would cause new onset pain such as I describe?

I'm trying to work out if my Peyronie's symptoms are connected to damaged connective tissue from taking Ciprofloxacin or if it is an unrelated new onset problem.  If you too took a Fluroquinolone drug before the onset of Peyronie's I would suspect we may find others.

In my case I have a urological condition, diagnosed as chronic epididymitis/possible prostatitis that predates the Ciprofloxacin and is the reason I was presribed it.  This presented initially with urinary tract infection symptoms but negative urine test (this doesn't rule out a prostate infection), I then developed pain in the right testical and the testical partially ascended into a vertical position so it is sitting about half an inch to an inch higher than before.  Could an undiagnosed urological infection be causing the pain and inflammation in the root of my penis?  I have had a digital rectal exam to check my prostate and it feels normal.

Thanks.  Regards, Bob

Quote from: brutis on May 31, 2009, 10:45:48 AM
As a newly diagnosed member (excuse the pun) I was curious to know if taking collagen supplements could have been a contributing factor to the development of Peyronie's? I have been taking Collagen as a supplement for about 3 months to aid healing of a long term Achilles tendon problem, I first noticed "the Lump" about a month ago.

I do not think there is any established connection between collagen supplements and Peyronies Disease but there has been some speculation of a possible connection without much basis.  Many men take such supplements as they age, just like they do Viagra, bp meds etc.  so , they are often suspected by individuals cannot come up with the cause ans effect they like to be able to pinpoint.

As far a the Fluroquinolone family of antibiotics is concerned, it is known that they do interfere with collagen synthesis (or that they at least sometimes interfere).  My logic would tell me this would tend to treat or prevent Peyronies Disease not cause it since they are sometimes used to prevent other forms of scaring.  I guess it seems feasible that reduction of collagen in the penis structures could lead to an injury and if the drug was then stopped the healing process could go awry and scar tissue could overrun the bounds of the injury.  To me this would be the drug contributing to the injury but not directly causing Peyronies Disease. 


I am speculating and have no background to conclude one way or the other.  In fact I doubt that anyone knows for sure.

The problem here once more is that lots of men with and without Peyronies Disease use Fluroquinolone antibiotics so only very controlled studies would ever likely answer this question.

 Just Bob & Hawk

Thanks for your comments. I have discontinued my Collagen supplements & will let you know the outcome.

With regard to my Achilles problem, I have been an avid squash player all my life, having ruptured my R/H achilles years ago, I injured my left one & it was taking forever to heal (in excess of 8 months). It was recommended that I take  Collagen as a supplement to aid the healing of my Achilles plus all the other aches & pains associated with being a life long squash player ie knees & hips. I wonder if it is mere coincidence that I developed Peyronie's within 2 months of starting the Collagen.

As for the Fluroquinolone drugs, I haven't ever taken of these  however I have been taking Glucosamine for years for joint health, maybe  the combination of the Glucosamine & the Collagen is the problem?

I am 48 & my Achilles problem is now gone, so perhaps Collagen is good in some areas &  not so good in others!

Regards

Brutis

Having skimmed over a few of the free abstracts on a few pay-per-view journal article sites, I noticed an interesting claim: That androgens actually supress the actions of wound healing in the penis, and when androgen levels are low, that "boost" to the healing process in the penis can cause peyronie's.

There is this study as well, part of which states that in castrated rats, collagen deposition during wound healing was increased: http://www.nature.com/labinvest/journal/v87/n9/full/3700627a.html

...How many here have had full hormonal profiles done? I have a uro who is interested in getting my blood work, finally, so I will find out soon if my testosterone levels are out of whack. But what do you all think? Could an androgen deficiency be the cause of some Peyronies Disease?

Quote from: ocelot556 on May 31, 2009, 11:27:04 PM
There is this study as well, part of which states that in castrated rats, collagen deposition during wound healing was increased: http://www.nature.com/labinvest/journal/v87/n9/full/3700627a.html

My suspicion is that this has to do with a decrease in erections and oxygenation.

https://www.peyroniesforum.net/index.php/topic,130.0.html
Especially read the text that is in red.

I just had a 24 hour urine test done for hormones.. hopefully my doc will be able to find some relation... i will get the results in 2 weeks and will update .....

Hawk -

There are men here who have posted and concurred with that theory, that they did not get erections for a time and that may have caused the fibrosis -- but what of us, like myself, who had consistent erections and still developed chronic Peyronies Disease? It couldn't simply be the lack of oxygenation.

While I'm willing to agree that this may be the case in the castrated rat study, there has to be more than "the penis needs oxygenated blood" because some of us (I'm imagining the younger sufferers here like myself, in their 20's and 30's, weren't having ED during the initial onset of their Peyronies Disease) were getting the necessary erections and the disease was still progressing.

So in a patient who has no trouble getting erections, what would be the cause? Poor oxygenation? If that were the cause, wouldn't there be other symptoms as certainly that would have an effect on other bodily systems. I think there are a myriad of ways one can develop Peyronies Disease - I myself am inclined to beleive that by altering the hormonal cocktail in my body, I lowered something important and never recovered from an injury. But when you're taking pentox, viagra, and supplements and you're still developing plaques? I have to beleive that there is something fundamentally wrong with the blood that you're relying on to carry those medicines to the plauque in the first place.

I don't know if androgens are the answer, but I hope to address this with my doctor (I may look up an endo) to see if he can add anything to the suspicion.

Quote from: ocelot556 on June 02, 2009, 02:13:11 AM
-- but what of us, like myself, who had consistent erections and still developed chronic Peyronies Disease? It couldn't simply be the lack of oxygenation.

Ocelot,  I agree there are a number of triggers and no doubt a combination of factors that must be present.  I was not clear in my post, but I meant to say that in the specific case of a lack of hormones I suspect the association is a lack of erections.  I do not think that in the case of injury the cause is a lack of erection, or in some other situations.  There are a list conditions that have at least a link to Peyronies Disease that directly impact frequency, intensity, and duration of erections followed by increased incidence of Peyronies Disease.

Older males
Prostate Surgery
Diabetes

Therefore when someone shows a connection between testosterone and Peyronies Disease I think I can show a connection between low testosterone and reduced erections for an additional piece of circumstantial evidence.

If there is clinical data that suggests low testosterone results in an increased incidence of Peyronies Disease regardless of erection quality/quantity then that would refute the connection.

i agree with ocelot556 .... I have been taking hell lot of supplements including pentox twice a day but nuthing improved.... infact it went downhill only... then i took dhea for a week and i felt a little better.. it could be physcological also as the difference ws very little so I cant back it up... plus interfering with hormones wasnt a good idea.... so i dropped dhea and nw consulting a male hormone specialist... "hopefully" if thrs a link, i "wish" my doc is able to interpret .... but again peyronies isnt so simple as just supplementing with hormones... still keeping my chin up with wishes and hopes by my side that one day i will be able to live a peaceful normal functioning life once again.......

I'm with you on that one, Hawk. I'd love to see more studies in general performed on Peyronies Disease. I'm sure that in a few decades there will be studies published that show the various methods of getting this horrible disease just as there are many different triggers to promote cancers. I also think, especially with the studies being made now, that the current medical mindset has been completely wrong on testosterone therapy. I read a study that clains men who take TRT to adjust their hormone levels as they age (since androgen levels decline with age) have a better lifespan than those who let their testosterone decline naturally! It is my belief that future treatments regarding Peyronies Disease will also involve mild to moderate testosterone replacement, since androgens and DHT are the main components of healing in the penis.

Don't think that I'm being disagreeable here, I'm just throwing ideas at the wall and seeing what sticks. I'm a big fan of dialectic. But aside from the struggle of dealing with this horrible condition we have to struggle with the uncertainty of the disease's cause and progression itself! And since we're left to work with only a handful of doctors who truly care, who are more focused on treating the symptoms than discovering the underlying cause of it, its left to us to look at the big picture and extrapolate a little. I may be completely wrong, and if my being so led to a better understanding of this damn disease I'd gladly do it.

Quote from: young25 on June 02, 2009, 09:58:41 PM
i agree with ocelot556 .... I have been taking hell lot of supplements including pentox twice a day but nuthing improved.... infact it went downhill only...

Out of curiosity young25, how has your condition changed since you joined the forum in september 2008? Has your slight curvature changed at all? do you experience more/less/any pain? have you started on the VED and/or any other supplements? How long did you take pentox for?

It's good to provide more info, as it helps us gain perspetive of how individuals conditions develop, and how their courses of treatment may or may not help them.

Hi newguy,

My condition is detoriating day by day.. initailly thr ws no visible plague... the ultrasound also didnt find any plague, only curvature & ED.. but nw thr is visible string plague on top left side.. i took pentox from sept 2008 to 1st week of dec.. 400 mg a day.... things were stable then... took a break for a month as was out of stock.. started again in jan 09 to till date twice a day.... along with vit e(400mg)... ALC(500mg), L-arginine(500 mg).. and bunch of other supplements taken irregularly.... whr m i nw.. worse than ever.. never had pain intially but nw do have slight pain.... No change in ED dept also. The only +ve i got from was when taking dhea 25mg every other day but guess it was increasing estrogens in my body so i stopped.. rght nw getting a full hormone checkup & probable balance, once i achieve the same then will think about some new regime :(

i also think argnine is helping ...but nuthing remarkable




other supplemets i take irregularly..

- same
- did a full bottle of ppc
- choline
- paba
- horny goat weed
- NAC
- Liver defence


Planning to add..

- GABA ( for promoting GH)
- DIM

I am also visiting Male Hormone specialist to get my hormones corrected..

Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.



http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

Young25

Intresting study. As I remember I fit that model in 1995 when my bought with peyronies started. I still get testosterone injections today.

When having your testosterone checked be sure the doctor checks all not just total.
The following should be checked;
Testosterone , Free, Bio and Total
Testosterone , Free
Testosterone, Bioavailable
SHBG
Albumin, Serum
Estradiol, Ultrasensitive (E2)

Total testosterone should be in the upper 75% of lab range. Free and Bioavailable should be at least 65% of lab range.

Jackp

Thanks JackP,

I am getting the 24hr- Rhein Urine Analysis. Hopefully it should cover everything. Its gen used by ppl who abuse Steriods and thr system is out of place. Let see where my results lie, I have an appointment this week so hopefully I will come to know the results. I will keep the board posted.

young25 - The plaque is the body attempting to heal itself following on from the initial inflammation. It may continue to progress, or could stablise or even retreat somewhat. To improve the eventual outcome you should definitely stick with pentox and other core oral treatments. There is probably still some scope for influencing the condition. Hopefully the pain will not worsen much more. Fingers crossed. It may be worth exploring use of the VED or light traction at some point soon.

Bingo.

This confirms what I have been thinking about the significant role of Testosterone in many men's disease. Not all men - some (many? especially OLDER men? when Peyronies Disease is more common?).

Very important study - unfortunately I cannot get full access online to it.

Tim

Quote from: young25 on June 14, 2009, 02:07:43 AM
Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.



http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

Tim,

Are you referring to some post in this topic ???

Quote from: young25 on June 14, 2009, 02:07:43 AM
Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.
http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

Interesting. I don't seem to fit the pattern:

QuoteTestosterone deficiency (TD) was defined as TT values less than 300 ng/dL and/or FT less than 1.5 ng/dL.

My TT is 780 ng/dL and FT was 1.86 ng/dL. My DHEA-sulfate was low at 84 ug/dL, and apparently there is some association of that with Peyronies Disease.

s&s

Update about my results.. My Testestoserone is infact low. its even below the normal range.. so for 25yr old guy its not good news. My doctor has prescribed stuff to restart my system. I will see where all this leads too.. so i can partially explain my Peyronies & venous leak.. :-S

young25

Low testosterone (T) causes lots of problems.  Proper treatment will increase your general health, libido, and help control your weight, among other things.

I have been on T treatment for 15 years.

The things it will not help are peyronies, venous leakage, corporal fibrosis, etc.

Sorry

Jackp

Thanks for the advice JackP,

I am under care of one of the better doctors who knw about T replacement, so hopefully he should treat me well too( keeping my fingers crossed).

Abt Venous leak, fibrosis & Peyronies... I thnk I donot have fibrosis as none of the doctors i visited have mentioned it nor did the doppler untrasound detect any.. so really dono

Venous leak , I am a little hopeful as I have read certain reports where (low T)people got better with T replacement... At this point of time I really dont have any option so atleast T gives me a ray of hope.. Maybe it dosnt help but as of now nuthings helping & the kind of place I come from an implant is not an option...

So T replacement is the only geniune option left with me.. its like last bump before a dead end..

Any thoughts about impaired circulation being a big factor in Peyronie's? It seems to be associated with Dupuytren's.

I'm thinking more about the small blood vessels (microangiopathy, perhaps subclinical).

From this study (http://www.nature.com/ijir/journal/v16/n2/full/3901194a.html):

QuoteA significant association was found between penile fibrosis and diabetes mellitus (P<0.05). This may be explained by the fact that diabetes mellitus produces microangiopathy of the small blood vessels, leading to defective oxygenation to the cavernous tissue and subsequently helping in fibrosis development.

I'm liking my pycnogenol and l-arginine regimen (https://www.peyroniesforum.net/index.php/topic,22.msg20172.html#msg20172) more and more.

s&s

young25 - At least you're now aware of a problem. This does appear to keep coming up more and more lately. I wonder if it could mean that those with higher test levels are less prone to inflammatory cascades OR less prone to scarring as the condition resolves OR perhaps neither of these suggestions..

slowandsteady - Exercises stimulates growth of existing and new blood vessels all over the body (including the heart and brain) , though I don't know if the same applies to the penis and/or the length of time this process takes. Still, maybe this in a combination with the treatments you suggested would be a good combo. For what it's worth I do feel that the pycnogenol is helping me too.

It's also worth noting that low testosterone is quite common in diabetics, so maybe there is another link to the previous thoughts.

Quote from: newguy on July 02, 2009, 03:30:35 PM
For what it's worth I do feel that the pycnogenol is helping me too.

newguy, slowandsteady, all:

Does it make any sense to take pycnogenol while you're taking a daily dosage of Viagra or Cialis?

Along with the VED protocol, I've been taking Pentox (1,000), Viagra (25mg), L-Arginine (2-3g), ALC (2.5g), and a little D3 (800-1200) on a daily basis; for the past 2.5 months.

Also, I've been eating well and running everyday (and, I actually gave up Diet Coke, instead, I'm mixing diet cranberry or grape juice with ice and water).

Over the past 4 - 6 weeks I've noticed a lot of "welcoming" effects: hard daytime erections, hard nocturnal and morning erections are happening all the time, and my flaccid state always seems to be "full", even bigger than before I started this regiment.

In fact, I'm convinced that my erections are harder, better, and occur more frequently than before I noticed my dent, which was back in December.

Oh, and my mental state is back to pre-December levels - In March, April and part of May I was about as down and scared as one could get!  So, I'm sure this is a major factor also (special thanks to Old Man, Tim, Jackp, Jackieo, Nemo for encouragement during those days!)...those were bad times...I couldn't get an erection back then no matter what.

CF

Quote from: newguy on July 02, 2009, 03:30:35 PM
slowandsteady - Exercises stimulates growth of existing and new blood vessels all over the body (including the heart and brain) , though I don't know if the same applies to the penis and/or the length of time this process takes. Still, maybe this in a combination with the treatments you suggested would be a good combo. For what it's worth I do feel that the pycnogenol is helping me too.

It's also worth noting that low testosterone is quite common in diabetics, so maybe there is another link to the previous thoughts.

I wonder if there is another mechanism involved in microangiopathy besides testosterone and diabetes (I have above average testosterone and no blood sugar issues, though my DHEA-S is low (85 ug/dl). I would imagine that low testosterone and low DHEA often go together.

Low serum DHEA seems to be associated with an increase in fibrosis (here in cardiac fibrosis, PMID 15657092 (http://"http://pubmed.gov/15657092")):

QuoteIn this study, we examined the effects of DHEA on regulation of collagen mRNA and collagen synthesis in cultured cardiac fibroblasts. Treatment with DHEA (10–6 M) resulted in a significant decrease in procollagen type I mRNA expression compared with controls. This was accompanied by a significant decrease in procollagen type I protein accumulation in the medium and also a significant decrease in procollagen type I protein synthesis in the cellular matrix.

Anyone have a DHEA-S result to share?

More speculation: Raynaud's disease is a disorder of the small blood vessels and can be accompanied by connective tissue disorders. It can respond to 7-keto DHEA. Perhaps Peyronie's might too (PMID 12581618 (http://"http://pubmed.gov/12581618")):

QuotePatients with Raynaud's phenomenon have abnormal digital vasoconstriction in response to cold. The pathogenesis remains unknown but may involve a local neurovascular defect leading to vasoconstriction. Diagnosis of primary Raynaud's phenomenon is based on typical symptomatology coupled with normal physical examination, normal laboratory studies and lack of observable pathology by nail fold capillaroscopy. Secondary Raynaud's phenomenon is known to occur associated with several connective tissue diseases, vascular injury due to repeated vibrational trauma, and other causes which produce demonstrable vascular and microcirculatory damage. Treatment of Raynaud's symptoms is conservative and aimed at prevention of attacks. Patients are advised to remain warm and, if possible, to live in warm climates. We suggest that an ergogenic (thermogenic) steroid, 7-oxo-DHEA (3-acetoxyandrost-5-ene-7,17-dione), which is available without prescription as the trademarked 7-keto DHEA, may be very helpful in prevention of primary Raynaud's attacks by increasing the basal metabolic rate and inhibiting vasospasm.

s&s

I read an interview that was posted in 2003 (I posted the link somewhere on this board, I can access it if requested) which was essentially a roundtable discussion of doctors who specialized in sexual dysfunction. There was a DO, I believe, who claimed that androgen replacement actually reversed fibrosis in his patients who would not respond to viagra et al.

Now, I'm not sure why this hasn't been addressed more if that is the case, but for some mysterious reason there is a large resistance from medical establishment of using androgens/testosterone to treat anything, even in testing.

Although Jackp didn't see a difference in his Peyronies Disease with testosterone replacement, I assume, it is also assumed that Peyronies Disease has many different triggers. For some, perhaps having those androgens present could contribute to healing?

cowboyfood - I would say that although I do still take the core pentox, l-arginine and viagra, I have developed a somewhat 'scattergun' approach recently, using additional supplements that I think may hold anti inflammation and/or fibrosis effects, but have likely not previously been used to treat peyronies before by many people. I am hoping that as a community, we stumble across something that is of significant worth in the fight against peyronie's.

I too have really got back into running over recent months, and do feel that this has helped me both physically and mentally. I feel that a whole body and mind approach (exercise, oral treatments, ved) is the most sensible approach.

I dont knw why everything is out of whack in my case... I am just 25  :(.. anyways I have started certain  medications to restart my system. I have yet not jumped on T replacement though I have read quite a few reports that T replacement does reverse fibrosis but have no idea about restart. My doc wants to restart my system considering my age.

s&s,

I can share my test results if you want, I have low T but high DHEA.

young25 - You could always give tongkat ali a try

Quote from: newguy on July 07, 2009, 02:17:35 PM
young25 - You could always give tongkat ali a try

I did & it gave me skin rashes & eczema. Stopping it cleared it  :(

Quote from: young25 on July 07, 2009, 01:54:27 PM
s&s,

I can share my test results if you want, I have low T but high DHEA.

Oh well, it would be nice if all of the data were neat and tidy. I suspect that here is a case where a larger sample size would help.

I fall into this category.  I had blood work done and my testosterone levels were below normal and I'm 24 years old.  There definitely has to be a connection because the condition commonly effects older men whose T levels aren't as high as when they were younger.  I mean Porn stars make a living doing it and you'd figure they'd all have Peyronie's from the wear and tear haha

Quote from: ocelot556 on May 31, 2009, 11:27:04 PM
Having skimmed over a few of the free abstracts on a few pay-per-view journal article sites, I noticed an interesting claim: That androgens actually supress the actions of wound healing in the penis, and when androgen levels are low, that "boost" to the healing process in the penis can cause peyronie's.

There is this study as well, part of which states that in castrated rats, collagen deposition during wound healing was increased: http://www.nature.com/labinvest/journal/v87/n9/full/3700627a.html

...How many here have had full hormonal profiles done? I have a uro who is interested in getting my blood work, finally, so I will find out soon if my testosterone levels are out of whack. But what do you all think? Could an androgen deficiency be the cause of some Peyronies Disease?

Yes, Overcomer. I am convinced that my peyronie's is caused by a short-term intake of propecia, which is designed to lower androgens (since androgens also cause hair loss). I think some moderately rough sexual intercourse during that time sent the body into "heal" mode, and without the androgens to inhibit the wound healing...viola, peyronie's.

My T is low, but within the normal range (the "normal" range is 300-1100 -- 25 years old with a 450 T level seems low to me!). I agree that Peyronie's affecting older men must have a correlation with the fact that T starts declining around middle-age. It's generally accepted in this forum that Peyronies Disease can affect people in different ways and through different mechanisms in the body. I don't think this is why EVERYONE suffers from it, but I think it's a reason why we see so many people well below the "standard" age for peyronie's.

And as an aside, if you watch a lot of porn (ahem...;>) you will notice that a lot of porn stars DO have some form of peyronie's, but I imagine they get plenty of "exercise" in that area of the body to keep up blood flow! :p

octelot556 - It may be the case that certain drugs can tip the balance somehow. I believe it would only occur in individuals already susceptible to developing such problems though, else there would be a peyronie's epidemic in people taking x,y,z drug.

I believe in my case bending of a sub optimal erection during intercourse caused my Peyronies on several occasions.  It seems to me to be a vicious cycle, the more fibrosis the greater the loss of rigidity the more at risk of bending from the less than rigid penis causing more trauma.  However careful one may be when having intercourse it can so easily happen as I know all too well.

My father and brother also both have Dupuytrens Contracture, another fibrotic disorder of connective tissue, which the medical literature has suggested as being linked to Peyronies.  I also have arthritic knees which is another fibrotic disorder.  I have always regarded Peyronies Disease to be in my own mind Arthritis of the penis.

So I am convinced that I am rheumatically predisposed to fibrotic disorders and the trauma of bending my penis during intercourse to be the trigger for Peyronies. 

Quote from: Wintercookie on September 22, 2009, 05:36:15 AM
- 

You makes some good points Wintercookie, and many others have thought along similiar lines. I don't believe that anybody is certain to get peyronie's, but with a family background of related conditions is does make sense to me that you were more at risk.

My urologist told me a humorous story about Injections and Male Porn Stars. He had a patient who was continually injected by the Director of the Porn movie so that they could keep filming over a weekend. I'm sure the actor now has Peyronies or a curvature. This was with Caverject as opposed to Trimix.

Needless to say the actor ended up in the ER by Sunday night.

I found this study interesting, Effect of nitric oxide on the differentiation of fibroblasts into myofibroblasts in the Peyronie's fibrotic plaque and in its rat model (PMID 12446175 (http://pubmed.gov/12446175)):

QuoteThe myofibroblast shares phenotypic features of both fibroblasts and smooth muscle cells. It plays a critical role in collagen deposition and wound healing and disappears by apoptosis when the wound is closed. Its abnormal persistence leads to hypertrophic scar formation and other fibrotic conditions. Myofibroblasts are present in the fibrotic plaque of the tunica albuginea (TA) of the penis in men with Peyronie's disease (Peyronies Disease), a localized fibrosis that is accompanied by a spontaneous induction of the inducible nitric oxide synthase (iNOS), also observed in the TGFbeta1-elicited, Peyronies Disease-like lesion in the rat model. iNOS expression counteracts fibrosis, by producing nitric oxide (NO) that reduces collagen deposition in part by neutralization of profibrotic reactive oxygen species. In this study we investigated whether fibroblast differentiation into myofibroblasts is enhanced in the human and rat Peyronies Disease-like plaque and in cultures of human tissue fibroblasts. We also examined whether NO reduces this cell differentiation and collagen synthesis. The myofibroblast content in the fibroblast population was measured by quantitative immunohistochemistry as the ratio between alpha-smooth muscle actin (ASMA; myofibroblast marker) and vimentin (general fibroblast marker) levels. We found that myofibroblast content was considerably increased in the human and TGFbeta1-induced rat plaques as compared to control TA. Inhibition of iNOS activity by chronic administration of L-iminoethyl-L-lysine to rats with TGFbeta1-induced TA lesion increased myofibroblast abundance and collagen I synthesis measured in plaque and TA homogenates from animals injected with a collagen I promoter construct driving the expression of beta-galactosidase. Fibroblast differentiation into myofibroblasts occurred with passage in the cell cultures from the human Peyronies Disease plaque, but was minimal in cultures from the TA. Induction of iNOS in Peyronies Disease and TA cultures with a cytokine cocktail and a NO donor, S-nitroso-N-acetyl penicillamine (SNAP), was detected by immunohistochemistry. Both treatments reduced the total number of cells and the number of ASMA positive cells, whereas only SNAP decreased collagen I immunostaining. These results support the hypotheses that myofibroblasts play a role in the development of the Peyronies Disease plaque and that the antifibrotic effects of NO may be mediated at least in part by the reduction of myofibroblast abundance and lead to a reduction in collagen I synthesis.

So, if I have this right:

• collagen type I is the main type that's over-expressed in Peyronies Disease
• the myofibroblast count is higher in Peyronies Disease
• lysine is bad since it increases myofibroblasts and collagen I
• nitric oxide is an antifibrotic
• nitric oxide's antifibrotic action might be due to it reducing the amount of fibroblasts
• less fibroblasts mean less collagen I

L-arginine increases nitric oxide, as does pycnogenol, and together they are synergistic. Niacin increases nitric oxide synthase activity, as does NAD+. Niacinamide (http://findarticles.com/p/articles/mi_m0FDN/is_6_7/ai_96416605/) prevents NAD depletion. Niacinamide is synergistic with NAC in inhibiting type II collagen induced arthritis.

s&s

This is purely an anecdotal account, but I took large doses of Lysine prior to and after surgery for prostate cancer (just prior to onset of Peyronies).  Lysine and vitamin C are touted by some to interfere with the process of cancer metastasis.  Metastasis is the process by which cancer cells break down collagen to migrate through tissue (often blood vessel walls) to migrate to the other areas of the body.  While I have never seen the connection with Peyronies Disease I did know of lysine's connection with fortifying certain collagen and I suspected a connection with my Peyronies Disease.  I was also taking bimix injections during the end of my lysine supplementation.

I stopped all lysine and most vitamin C when I developed Peyronies Disease.

Quote from: slowandsteady on October 01, 2009, 01:12:20 AM
I found this study interesting, Effect of nitric oxide on the differentiation of fibroblasts into myofibroblasts in the Peyronie's fibrotic plaque and in its rat model (PMID 12446175 (http://pubmed.gov/12446175)):

I just want to say thanks because you have been posting some very interesting stuff recently.

Warning: Size of quote reduced in accordance with forum rule # 7 of NOT quoting entire posts (https://www.peyroniesforum.net/index.php/topic,6.0.html). - Hawk

Thanks. I may be tilting at windmills, but I hope to come across something that makes a difference. And I like problem solving. ;)

If you are still sexually functional at 80 would that not put you way ahead of most men in your age bracket, Peyronie's disease aside?

skunkworks:

No, actually you would be surprised at the number of men who are in my age bracket that can still have sex with no problem. With the advent of the VED and its getting noised around the circle bull sessions, they seem to want to join the VED club and get active again. However, there a number of guys that can still get it up without the use of anything.

Of course, the ED drugs have become rather popular with us old guys too. I do not use any of them since I have the VEDs (three of them in fact) and just rely on them.

Old Man

From this 2006 article (http://www.urotoday.com/287/conference_reports/highlights/are_there_biomarkers_for_peyronies_disease_to_predict_who_is_a_risk_or_which_patients_will_need_surgery.html) in Uro Today:

QuoteThe investigators found increased tissue levels of TGFβ and beta-catenin in diseased tissue compared with controls. Furthermore, a 10-fold increase of smooth muscle α-actin 2-fold increase of TGFβ 1/3 receptors, transglutaminase II, fibronectin, and HSPA47 in cultured fibroblasts derived from Peyronies Disease plaque tissue compared with controls. Western blot analysis confirmed these findings.

A 10-fold increase in smooth muscle α-actin seems like quite a bit. It might be worthwhile to see if there are any inhibitors of smooth muscle α-actin.

Quote from: slowandsteady on October 06, 2009, 05:51:00 PMIt might be worthwhile to see if there are any inhibitors of smooth muscle α-actin.

Hmm, parthenolide (http://en.wikipedia.org/wiki/Parthenolide) seems to inhibit proliferation of vascular smooth muscle cells (http://www.springerlink.com/content/ng71315166n60125/). It's a component of the feverfew plant, available as a supplement. People reviewing feverfew supplements on iHerb (http://www.iherb.com/Search?kw=feverfew) seem to be using it for migraines.

Another interesting finding is that insulin increases smooth muscle actin from this reference (http://care.diabetesjournals.org/content/26/5/1619.full), and we have heard that diabetes worsens Peyronies Disease.

From this article, DHEA Deficiencies in Autoimmunity (http://autoimmunedisease.suite101.com/article.cfm/dhea_deficiencies_in_autoimmunity):

QuoteA three-year study involving persons using DHEA supplements showed lower mortality risk, lower incidence of metabolic syndrome, reduced inflammation, improved wound healing, improved endothelial function, improved nerve tissue healing, improved sexual function, reduction of depression, improved cardiovascular health, increased metabolism of nutrients, lower lipid levels, reduced side effects of corticosteroid medications, and possible prevention of atherosclerosis. Conditions thought to be related to diminished levels of DHEA include inflammatory diseases, metabolic syndrome, cancer, osteoporosis and type II diabetes.

My DHEA-S has historically been low (about 50), though I got it up to about 150 taking 100mg of 7-keto DHEA daily though inconsistently, which is the form that raises DHEA levels without raising testosterone. I'm wondering if low DHEA is a trend on this forum.

edit: wow, I'm going in circles. I'd already posted about a possible Peyronies Disease/DHEA connection.

It's Friday, so here's my theory of the day.

I read this article titled Potassium Deficiency as a Cause of Rheumatoid Arthritis (http://www.medicalnewstoday.com/articles/17349.php).

QuoteThere should be a lower concentration of potassium in blood plasma during RA. The National Health and Nutrition Survey-III has determined that of 39,695 people selected, there were 840 who said they had been diagnosed with rheumatoid arthritis. Of these, 691 had their serum tested for potassium. Of that number 7.8% had less than 3.6 milliequivalents per liter, 34.7% between 3.6 and 4.0, 40.7% between 4.0 and 4.4, and 18.1% above 4.4. Only 18% appeared to be in the normal range. The samples were refrigerated and sent out to outside contract laboratories [22c]. Refrigerating blood increases the apparent amount when it is serum that is analyzed, especially if there is a delay in the analysis. In addition to that, arthritics lose potassium from the platelets as noted above. If some were misdiagnosed, had a remission since being diagnosed, or there was a longer than usual delay in analysis, it could account for the 18% seemingly normal. So this survey showed at least most arthritics low in potassium.

So, could a low dietary potassium intake be involved in Peyronies Disease? I'm not sure. My potassium levels have been 4.2 mmol/L and under for the past few years. Table salt can deplete potassium, as can diuretics.

Too much coffee depletes K according to this page (http://medherb.com/Therapeutics/Nervous_-_Treating_Coffee_Abuse.htm):

Quote
A low-potassium syndrome may be involved with some of the symptoms associated with coffee abuse or withdrawal. Significant serum potassium drops occur at doses of 180 mg of caffeine, the equivalent of three average cups, or one or two strong cups. (Passmore).

I've always felt that coffee increases Peyronies Disease pain.

I'm going to try getting more potassium in my diet and limiting table salt. The first article recommended potassium chloride taken in fruit juice, and making sure that one's B1 (thiamine) intake is adequate.

[moved to oral treatments forum]

There is still the matter of an immune response (http://linkinghub.elsevier.com/retrieve/pii/S0022534701665820) in Peyronies Disease tissue though:

QuotePurpose
We investigated the immunological features and possible autoimmune basis of Peyronie's disease.

Materials and Methods
The sera of 100 patients with Peyronie's disease were tested for circulating autoantibodies, including anti-penis antibodies, by indirect immunofluorescence. Antibody deposition and the immunological activity in Peyronie's plaque tissue from patients with early and long-standing disease were also assessed.

Results
Circulating anti-penis antibodies were not found in any patient although antinuclear antibodies were present in 24 percent. Patients with early Peyronie's disease had IgM antibody deposition, marked T lymphocytic and macrocytic infiltration in the sub-tunical space, increased expression of adhesion molecules by endothelial cells and an increased human lymphocyte antigen class 2 expression by the cellular infiltrate, indicating cellular immune activation.

Conclusions
These results show that some of the features of autoimmunity, in particular the cell mediated response, are present in Peyronie's disease.

The presence of antinuclear antibodies indicates that an autoimmune response is going on. From wikipedia (http://en.wikipedia.org/wiki/Anti-nuclear_antibody), "Autoantibodies are present in low titers in the general population, but in about 5% of the population, their concentration is increased, and about half of this 5% have an autoimmune disease".

It would be nice to get the full text of this study to see what they considered normal and high levels of antinuclear antibodies. If they used the same criteria as the wikipedia article, then Peyronies Disease sufferers are 5x more likely than the general population to have elevated antinuclear antibody levels. On the other hand, if 24% had elevated antinuclear antibodies levels, then 76% did not, and autoimmunity by itself might not explain Peyronies Disease in the majority of cases.

Another study (http://linkinghub.elsevier.com/retrieve/pii/S0090429597003336) of 66 men with Peyronies Disease and 20 controls found:

QuoteResults
A fair percentage (75.8%) of the patients with Peyronie's disease exhibited at least one abnormal immunologic test, in comparison to only 10% among controls (chi-square = 27.8, df = 1; P < 0.0001). Alterations of cell-mediated immunity (multitest, LTT) were observed in 48.5% of patients, alterations of humoral immunity (lg) in 31.8%, and alterations of markers of autoimmune disorders (autoantibodies, complement activation) in 37.9% of the cases.

Conclusions
Our results support the hypothesis that there is some involvement of the immune system in the pathogenesis of Peyronie's disease, although the available data still appear to be insufficient to formulate a definite pathogenetic hypothesis.

A third study (http://www.nature.com/ijir/journal/v12/n6/abs/3900534a.html) concluded:

QuoteWe have not found any significant association between the serum markers of collagen diseases in patients with Peyronie's disease, except the rheumatoid hemagglutination test (Waaler-Rose).

This 2006 Russian study (PMID 16708586 (http://pubmed.gov/16708586)) found:

QuotePatients with Peyronies Disease were found to carry chronic infection with type II herpes significantly more frequently. There was a significant association of Peyronies Disease with HLA-antigen B8 with high percentage of diagnostic titers of antinuclear antibodies. In vitro effect of intron A and verapamil was found to be dose- and time-dependent. Verapamil has a narrow range of dose-dependence and cytotoxicity in high concentrations. Combined treatment raised the proportion of good results while that of satisfactory outcomes decreased. Viral infection may be involved in pathogenesis of Peyronies Disease. This infection may alter mechanisms of immune regulation and start of autoimmune process in predisposed patients. Combination of magnetolaser therapy with intron A injections is an effective method of acute Peyronies Disease treatment. The addition of specific antiviral therapy raises treatment efficacy by action on one of pathogenetic mechanisms of the disease.

Interesting about the herpes type II association. Are people with autoimmune tendencies more likely to suffer viral infections? If so, that might support the hypothesis of a herpes type II link with Peyronies Disease.

s&s

If herpes type II is involved in Peyronies Disease, one might expect to see interventions that have shown themselves to be useful against Peyronies Disease to also be useful against the virus. Let's look at acety-l-carnitine and vitamin E.

Acetyl-l-carnitine

• In pattent 5,314,689, we read: "It has now been found in a completely unexpected manner that L-acetyl-carnitine has a potent antiviral activity and can be used for treating viral infections, but also in particular for the prevention of such infections with surprising success".
• In the article Acetyl-L-Carnitine for CFS and Fibromyalgia (http://www.endfatigue.com/health_articles_c/CFS_FM-acetyl-l-carnitine_for_cfs.html), the author states:

  QuoteI suspect that the real reason many CFIDS patients who take lysine to prevent herpes outbreaks see their symptoms improve may be that this increases the body's carnitine production.
  
  In my experience, and that of other clinicians, taking supplemental L-carnitine has not been very helpful, and D-L-carnitine can actually worsen symptoms.11 Taking 500 milligrams of acetyl-L-carnitine 500 milligrams 2-3 times a day, however, can be very helpful. It has no side effects except for its cost, usually $1.00 for 1,000 milligrams. Adding 500 to 1,000 milligrams of L-lysine, which is cheaper, can decrease the amount of acetyl-L-carnitine you need to take by helping your body to make its own carnitine. The body also requires vitamin C (I recommend 200+ milligrams a day) and B-complex vitamins to make carnitine.12 Lysine, B Complex and Vitamin C are all present in the Energy Revitalization System vitamin powder. I suspect that most people can lower their dose of acetyl-L-carnitine after 12-16 weeks-for example, to 500 milligrams a day-or even stop it. Any brand is fine as long as it is pure acetyl-L-carnitine.

• In PMID 16120381 (http://pubmed.gov/16120381), people with HIV on antiretrovirals saw an "increase the number of CD4 cells and reduce lymphocyte apoptosis"

Vitamin E:

• In PMID 12450904, low vitamin E is associated with an increase in herpes infections among those receiving stem cells
• Vitamin E is suggested for herpes according to wikipedia (http://en.wikipedia.org/wiki/Herpes_simplex#Alternative_treatments) in MID 16813459 and PMID 16405618.

We might add DHEA to the list too, which I've found moderately helpful. It appears to be an immune modulator.

s&s

DMSO was shown to have anti-herpes properties (PMID 12052246 (http://pubmed.gov/12052246)).

It turns out that curcumin, my all time most effective Peyronies Disease supplement, inhibits both type 1 and type 2 herpes according to this study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2668156/).

Edit: by the way, my next supplement to try is red marine algae (http://www.iherb.com/Vibrant-Health-Gigartina-Red-Marine-Algae-250-mg-90-Veggie-Caps/4983?at=0).

The full text (http://www.spandidos-publications.com/serveFile/mmr_1_5_611_PDF.pdf?type=article&article_id=mmr_1_5_611&item=PDF) of a review paper Herpes simplex virus: Drug resistance and new treatment options using natural products is available.

S&S:

That curcumin stuff is apparently a cancer fighter too: http://news.yahoo.com/s/nm/20091028/sc_nm/us_cancer_curry

I may have to try that stuff. It's oil soluble, right?

-Skjald

Yep, I started taking curcumin to begin with because of how it lowers of cancer risk. In addition to its antiviral action, it's also a potent fibrosis blocker, so it's working for you on multiple levels.

It's very fat soluble and much more bioavailable in fat. Sources that complain about its poor bioavailability as a capsule are like people who drive their car into the water and complain that it doesn't work as well their boat. Dry vitamin D doesn't work that well either.

I mix curcumin in oil first and then pour the mixture into a beverage mixed with soy lecithin. I buy this bulk curcumin (http://www.easycart.net/BeyondACenturyInc./Herbals_C-E.html#8550) and take 1.2g in the morning.

In larger doses it can be an immunosuppressant. I thought its mechanism of action was a slight immunosuppression, but now I wonder if the antiviral aspects are more important.

Of course, I really don't know if Peyronies Disease is primarily viral in nature. I'm putting together an antiviral program, and I'll see how it compares to my former program. Fortunately, a lot of the interventions are the same, though I've stopped arginine and pycnogenol for this test and added lysine and quercetin for this test.

There is another avenue of action of curcumin that might be important in Peyronies Disease, but that doesn't seem to involve viruses. From this report (http://www.sexhealthmatters.org/v2/data/news/medical%20meeting%20report/mmr05.asp),

QuoteKobylarz from the Mulhall laboratory at Cornell Medical Center isolated Peyronie's disease cells from human penises. They then looked at a special protein called p53. p53 is important to the life cycle of the cell because it helps tell the cell when it is permitted to die. p53 is normally located in the nucleus of the cell. But this group has found that in Peyronies Disease cells, p53 gets anchored in the cytoplasm of the cell and binds with another protein PARC. This effectively renders p53 non-functional. The overall effect is that the Peyronie's disease plaque cells multiply instead of dying, which leads to progression of Peyronies Disease. These data may lead in the future to the development of a drug treatment to turn on p53 and thus permit the Peyronie's disease cells to die preventing scar build up.

But, curcumin (and resveratrol) to the rescue. In the article Curcumin and resveratrol induce apoptosis and nuclear translocation and activation of p53 in human neuroblastoma (PMID 15161054):

QuoteRESULTS: Treatment induced a dose- and time-dependent decrease in cell viability, cell cycle arrest and induction of apoptosis. Treatment transiently up-regulated p53 expression and induced nuclear translocation of p53, followed by induction of p21(WAF-1/CIP-1) and Bax expression. CONCLUSION: Observations suggest that the cytotoxicity, cell cycle arrest and apoptosis induced by curcumin and resveratrol in NB cells may be mediated via functionally activated p53 and merit further study.

Curcumin was well tolerated in doses of 8g in a phase I study. Maybe more than 1.2g is called for.

s&s

edit: nuclear translocation of p53 is what healthy cells do when damaged to die (p53 goes to the cells' mitochondria and eventually leads to cell death). The Peyronies Disease cells are not healthy and don't die because the p53 is locked up. Perhaps curcumin restores p53 so that cells that need to die do die.

Interesting stuff curcumin ...

Scientists say curry compound kills cancer cells (http://news.yahoo.com/s/nm/20091028/sc_nm/us_cancer_curry)

Too bad many of its beneficial properties get toasted in the digestive system.  - George

OOPS - My apologies, I missed the fact that Skjaldborg already posted this.   :-[

Perhaps Hawk could excise this whole string of posts and move it to a curcumin thread in the oral treatments section.  It has sort of blossomed here in the wrong place with all sorts of useful information and thoughts and would be better preserved within its own thread under the correct category since most of the posts have little to do with the "causes" category.  - George

Quote from: George999 on October 29, 2009, 11:29:42 AM
Perhaps Hawk could excise this whole string of posts and move it to a curcumin thread in the oral treatments section.

Yes please.

Edit: new thread here (https://www.peyroniesforum.net/index.php/topic,990.0.html).

My peyroies came two phases in life.  I must admit that as a young man age 20 I was too rough with my favorite toy.  I started to get some curveature to the right and some plaques started and would go away and another etc for a year or so.  I was stable for a number of years and then noticed some pain and new plaque.  I also noticed after sex or upon waking up with a huge erection that I had small spots in my penis that were holding high pressure blood.  When I stretched and massaged my penis on the tender area this went away.  Any injury can start peyronies.  I did not realize I could get one while sleeping until I found this.

Quote from: GaryNC on November 20, 2009, 01:00:50 PM
My peyroies came two phases in life.  I must admit that as a young man age 20 I was too rough with my favorite toy.  I started to get some curveature to the right and some plaques started and would go away and another etc for a year or so.  I was stable for a number of years and then noticed some pain and new plaque.  I also noticed after sex or upon waking up with a huge erection that I had small spots in my penis that were holding high pressure blood.  When I stretched and massaged my penis on the tender area this went away.  Any injury can start peyronies.  I did not realize I could get one while sleeping until I found this.

What's the current states of your plaque and curvature? Are you taking any presciptions treatments for it, or supplements etc?

Each day I become more and more convinced propecia, the hair loss pill, is partially responsible for peyronie's and ED in some males. There are far too many on it, who are young like me, that have either peyronie's, ED, or both.

When I see Dr. Levine I am going to ask him about the connection. In the meantime, I decided today to stop taking propecia. I would rather lose some of my hair then worry about the effect on my sexual function.

I was reading the propecia side effects forum on the web, and hopefully when I stop taking the pill, I am able to get fuller, stronger erections. The crazy thing is that Merck doesn't admit that these side effects are harmful and of course has done nothing to stop them.

No propecia here, for another data point.

Hi friends,
I gottem both, Peyronies Disease, and Duy... Here's how I gottem. I am a pianist. Over the years I played very difficult "stride" style pieces, which require the left hand to stretch alot. Indeed, the Duy is in my left had. In addition I play guitar, and, emulating the great Allan Holdswroth, I played, and still do, riffs which require unusual stretching. THis stress, I am sure, damaged the tissue in my left palm, and the resulting "scar" is merely my immune defence against chronic injury. Luckily, my condition here does not cause a contraction and I can still play both instruments, and joint pain is more of a problem than DUY.

As for Peyronies Disease .. well, I'm anonymous so here goes ... I wank, or used to in an unusual way. Rubbing against the bed--not with the hand. Or, humping the mattress. I won't discuss my psychic issues, but I used porn to "cause" arousal--in one period peaking in my 40s I wanked several times a day. Time passed, I grew older. Real love seemed out of reach and, even as I write this, it's been since 94 since I had real sex with a real woman. (I'm 61) In 2007 I had a 3 month wank-fast, for reasons beyond the "scope" of this post, tho nothing physiological, and when I resumed the "self-abuse" (Peyronies give new meaning to that phrase), I felt a pinching pain, and over the next months the upward curve increased. Note, my wanking style, "", rarely resulted in me even seeing my erect penis. If a curve had been nascent I didn't see, nor feel, in a flaccid state, anything. The frequency of wanking, and the fact that my penis was under my weight, crushed more or less against the mattress, I am sure, was the tipping point in my condition.

These injuries, their co-relation, of course, imply that the sufferer has a predisposition to these "diseases"--Please NOTE, I see Peyronies and Duypoytrens both as symptoms of a grander underlying immune disorder--or, is it a GOOD THING? a protection, albeit an overcompensation, against, well, yet more abuse--and so I call them "conditions, not diseases.

Recently a compound curve to the left has emerged, from a mild listing. A strong indent causes the curve and I think I can feel fibroid under the penis. Waking (frequently) overnights to pee, when I have a slight tumescence from a full or full-feeling bladder, I PEE LEFTWARD. THis is, at this point, more alarming than the condition (Peyronies). THe implication is that the urethra is being impinged, at least when the penis is slightly with blood. The leftward stream is gone when I pee while the penis is "cold", devoid of tumescence.

It is disheartening to see a worsening of one's condition, but I have not read anything about Peyronies Disease affecting the ability to pee. THis potential, to me, elevated the problem well beyond an "erectile disorder".

Thanks for reading, who ever, and, as PBS's Tavis Smiley says, Keep the Faith ...

Some members do complain of urinary problems along with peyronie's. Most doctors say that the plaque won't reach the urethra. A lot of times the anxiety over the changes to your male systems causes an increase in urination and you start to notice things that you didn't before (such as peeing leftward).

I myself am 24 and wake once a night to urinate, but I have done this for years. They say vitamin E relaxes the bladder also, but if that's the case, mine should never awaken.

Ironman, some of what you describe sounds like a touch of OCD. We've discussed using niacin and taurine for Peyronies Disease in this thread (https://www.peyroniesforum.net/index.php/topic,960.0.html). One benefit of niacin (as niacinamide) is for anxiety/OCD. I've had persistent low level anxiety over the years, and a touch of OCD (biting my tongue, for example). With niacinamide (I take 1 gram in the morning), the anxiety is just not there, and it doesn't even occur to me to bite my tongue when nervous.

Ironman,

I would have to agree completely that this is OCD related. I went through similar things in my childhood - and consequently now also have Peyronie's and urinary spraying. My OCD is just as prevalent today but centered completely around mental rumination now. 

Thank you guys for your replies. I don't currently feel under sway of OCD. Ma's death last summer, and an ensuing degree of anxiety I never knew before that, set me straight OCD-wise. Not to mention, aging itself, with or without the humbling condition, works wonders for old neuroses. THe thawts one needs to make in order to wank using porn, or even conjure up old and however dear memories, seemed not worth the sacrifice of a hard-won equanimity. So I wait for love, and a treatment of some sort for Peyronies Disease. Love-wise, I hope that I meet a woman who perhaps enjoys sex not wholly dependent on the usual manuevers. For playing music, in addition to its obvious pleasures, has given me good hands...

Would you think that the procedure to freeze off genital warts on the skin on the shaft of an uncircumcised penis could cause damage in the layers beneath and therefore peyronie's?

I was looking at the ages of the men here and the age of onset of peyronies disease.  I got my pyronies through an injury as a young man.  I noticed than many men here got the disease in their 50's.  I realize the older you get the more likely something is likely to happen to you as a matter of odds.  Just wondering if a lower hormone level might be involved as a factor in the onset of peyronies disease.  I have been taking a male hormone supplement for a few years now.  I am 53.  The hair grew back on my legs and I have erections while sleeping again.  The proper hormone level and night time erections might help the penis stay healthy.  If the hair is missing on your legs you probably have a hormone issue.

Interesting thought.  "Hormones" covers a lot of territory.  To some, it means testosterone, while it may be different to other people.  I started taking thyroid hormones about 1 year before developing peyronie's.  Those hormones greatly improved my libido.  Perhaps if I had not corrected the hypothyroid condition, I might not have developed peyronie's.  Even if there was, I don't plan to stop taking the thyroid hormones.

I learned, among endocrinologists, there is not an accepted level of testosterone below which mandates treatment.  As you described your own situation, is sometimes more important to look at the whole picture than to rely solely on a number from a test.  At least with thyroid levels, there are agreed upon treatment thresholds.

Or maybe whatever it is that is CAUSING the hormone levels to be abnormal is ALSO causing the Peyronie's?  There are so many possibilities as to how these issues could be interlinked, it boggles the mind.  - George

Quote from: George999 on January 14, 2010, 08:03:16 PM
Or maybe whatever it is that is CAUSING the hormone levels to be abnormal is ALSO causing the Peyronie's?  There are so many possibilities as to how these issues could be interlinked, it boggles the mind.  - George

Exactly, Cause and Effect assertions are tough to defend.  That is why casual cause and effect arguments on anything other than very simple observations can be destroyed quickly.

In a recent post, I wrote there was not an agreed upon threshold for testosterone treatment.  My statement was not correct.  More importantly for those taking viagra, it appears it is highly important to have a satsfactory testosterone level.

On slide #4 of Dr. Levine's webcast - What to do when PDE 5 Inhibitors Fail: Combination Therapy and Other Options  - http://webcasts.prous.com/AUA2007/pop_up_bio.asp?sid=163&id=288&q=auto&v=auto&webcast=course01&CID=&CLID=2# - he points out poor viagra response when the total testosterone level is less than 400.  When the testosterone level was treated to achieve a higher level, viagra was effective.

This article cites references ranges by age groups.
http://www.mens-hormonal-health.com/normal-testosterone-levels-in-men.html

poor viagra response when the total testosterone level is less than 400.  When the testosterone level was treated to achieve a higher level, viagra was effective

That was not what happend to me. I got my testosterone to the top of the lab total range. None of the ED treatments worked for me. I felt better but no change in ED.

Jackp

Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).

Tim

Thanks for that comment Tim.  I truly believe we are each an experiment of one.  Friday I learned that I have below normal testosterone level; not nearly to your 140.  Applying Testim gel for the next 30 days, I hope to find out if this is my cause for the few spontaneous night time erections and decreased viagra effectivness.  I last had my testosterone checked about 6 years ago, when I first started viagra for ED, and it was reported as normal then. 

Quote from: Tim468 on January 22, 2010, 10:19:10 PM
Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).Tim

Quote from: BrooksBro on January 23, 2010, 06:53:00 AM
Thanks for that comment Tim.  I truly believe we are each an experiment of one.  Friday I learned that I have below normal testosterone level; not nearly to your 140.  Applying Testim gel for the next 30 days, I hope to find out if this is my cause for the few spontaneous night time erections and decreased viagra effectivness.  I last had my testosterone checked about 6 years ago, when I first started viagra for ED, and it was reported as normal then. 

Quote from: Tim468 on January 22, 2010, 10:19:10 PM
Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).Tim

Soundds like a reasonable approach. Please do let us know if you have success :).