CAUSES of Peyronie's Disease - started 2005

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Joshua

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

Old Forum

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.



Old Forum

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!



Old Forum

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.



Old Forum

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?



Old Forum

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?



Old Forum

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?



Old Forum

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



Old Forum

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.



Old Forum

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



Old Forum

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



Old Forum

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



Old Forum

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.



Old Forum

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.



Old Forum

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...



Joshua

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.  

nick

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.  

Glenn

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.


kevin

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.

Larry H

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

bob

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

Hawk

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

Budman

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?  

Hawk

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.

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

Larry H

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

Old Man

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

Budman

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  

dcaptain

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.  

Hawk

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

steven

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

dcaptain

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

lazarini

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.

dcaptain

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.

Joshua

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...

emersonchief

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.

Hawk

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

steven

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.

phil

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?

steven

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...

phil

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.  


emersonchief

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.

ComeBacKid

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

Joshua

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

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

jg

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.

dcaptain

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

Just curious.

dcaptain

Joshua

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

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..

Joshua

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

Hawk

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

Joshua

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?

Tim468

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