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

[howcanthisbe]

Thanks Liam, I will try to set up a appointment asap, I just dont have a car right now and no insurance. Im getting a car in like 2 weeks though, thats when I will go. Thanks again.

[Liam]

GREAT!   Good Luck!!!

[Umbrage]

Gentlemen,

I wish to diagnose a problem with my penis, but have had an extremely difficult time in doing so on my own. I'd appreciate any help you'd be willing to offer. I'll do my best to describe the problem.

I am 22 years old and have had a curvature in my penis ever since I can remember evaluating my erection (roughly age 14 or 15). The penis curves "perfectly" upward during erection. It is perhaps a 20-35 degree curve (how do you measure this accurately, by the way?). For a symbolic representation of my penis, I think a banana would be best. After doing some reading, it seems as if this would be congenital curvature as opposed to Peyronie's, since I cannot remember it just appearing, nor can I specifically remember trauma. I also have no pain during ejaculation or at any other time.

I am skeptical of it being congenital, however. There are a few reasons for this, and I'll do my best to explain them.

At the base of my penis is a long lump of soft, spongy tissue that protrudes roughly 1\6th of an inch from the rest of the penis skin. While fully flaccid, the lump is smaller and somewhat hard to notice; when erect, it elongates and is quite noticeable. The lump reminds me of a thick noodle under the skin, including the softness of a noodle. It begins from the left-side of the base and extends straight up the shaft roughly 1.5 inches, and then makes a complete turn back toward the base. The resulting shape is that of a shepherd's crook. This lump strikes me as highly unusual. I've never seen one like it on other penises, and I've done a lot of browsing. It should be noted that there is no pain associated with this lump. It doesn't hurt to prod it, pinch it gently, or manipulate it in any sensible fashion.

Another thing that happens is what I've heard called "hinging". That is, my penis bends very easily while erect. It's very strong when attempting to bend it downward, leftward, or rightward--almost zero pliability. However, when attempting to bend it upward (in the direction of the curve), it gives in with almost no effort. The harder my erection, the less apt it is to bend, but it will still bend rather readily. During a half erection, I can literally fold my penis in half, if I bend it upward and fold it over. This does not strike me as a congenital curve, but I am no expert. Is such hinging a symptom of congenital curvature or Peyronie's?

I have concerns about maintaining erections. My erections seem to fade too quickly. I've never been with a woman, and so this fading of an erection may be due to insufficient sensory stimulation. Yet, given the aforementioned symptoms, I think more than likely it is a real issue and not merely a lack of stimuli.

The length of my penis seems fine. It hasn't shrunk over the years. It has, in fact, grown over the years, topping out at around 19 or 20 years of age. The girth, too, seems to have remained completely stable. This seems to lean toward congenital curvature.

I'd like to note that I have been kicked in the testicles and the penis as a child and a young man. I figure this has happened to many young boys from fighting and general rough-housing. I note this because it is possible, I think, that I received trauma unbeknownst to me at a prepubescent age or during early teen years. The scarring process could have started then and resolved itself during the early years of my puberty. I probably wasn't knowledgeable enough to understand what was happening, and so I wouldn't have noticed anything unusual.

I know I'll probably have to eventually see a urologist, but I have read some amazingly intelligent posts here and figure you gentlemen will be able to give me a decent diagnosis. Does it seem like congenital curvature, Peyronie's, or something else? I thank everyone for reading this necessarily lengthy post.

[Old Man]

Umbrage:

I would stronly urge you at this point to seek professional help from a real good urologist who is experienced in Peyronies Disease treatment.

When calling for an appointment ask if the doctor has had Peyronies Disease patients and if he/she is experienced with its treatment.

The upward curve is normal in guys, but being able to bend it easily when erect suggest something that is not normal. Most all men have some form of curve and this should only be of minor conern. However, if you have any abnormality along with the curve, then you need medical assistance for a diagnosis.

So, bottom line, get an appointment at your earliest convenience.

Regards, Old Man

[Liam]

I, too, strongly urge you too see a urologist.  If it takes a while to get an appointment, see a family doctor.  I think you should get a diagnosis quickly and if it turns out to be Peyronies Disease, find a qualified urologist.

[Disposable Strategies]

Hi, everyone. I'm new to this forum. I am a 20 year-old college student with Peyronies. The thing is, for me, I never suddenly experienced a curve when erect- I've had a curve in my erection for as long as i can remember. I do have the tell tale signs of peyronies (hard lumps), but I've read that most people on here developed peyronies at a certain point in their lives.  I was just wondering what this might mean.  I'm open to any and all comments. Thanks. -Disposable

[j]

I'm not a doctor but I really question whether you guys in your early 20s have Peyronie's - it typically hits in the 50s.  A moderate banana-like curve is perfectly normal and I had one at that age too. An upward bend of 25 degrees is nothing to worry about.  As far as lumps and so forth, this is a part of the body where the 'works' are  close to the surface, with thin elastic tissue over them, and you can feel all sorts of structure in there if you try.  I don't mean to dismiss your concerns but before you tie yourselves in psychological knots, go to an MD and you may very well walk out of his door with nothing to worry about.

[ComeBacKid]

J,

I was diagnosed by two urologists with peyronies. If you have a bend, you at least have congenital curvature, but you probably have peyronies, not every case of peyronies has a lump or smal area of plaque, there is no standard case, if you have a bend you probably have peyronies.

ComeBackid

[Umbrage]

Yes, I realize I'll have to see a urologist. I don't look forward to it, but I plan on setting up an appointment with my GP tomorrow.

To J:

I know that Peyronies is more apt to affect older men. I'm not sure why, but I venture it has something to do with their penises being less hardy (aging body and all) and therefore more prone to trauma during sex. Though I also know many times the cause is completely unknown, so my theory is probably not very accurate.

Anyway, Peyronies CAN affect men my age. It's been reported in teenagers as young as 15 or 16, or so I've read. It's unusual but possible.

I wouldn't be too upset with the curvature if not for the hinging effect. I think this makes me much more prone to injury, because the penis simply isn't as stable. I also wonder about being forced to limit positions during sex due to the penis' lack of stability. After the research I've done, I don't think my curvature alone will signficantly affect sex. Yet, as Old Man said, it does seem fundamentally wrong that my penis bends as it does.

I'll let you guys know what my GP/urologist says, though.

[j]

umbrage, that's the 'trauma' theory and I think it explains some cases but definitely not all.  Much research and information-gathering has been done in an attempt to prove or disprove a link between Dupuytren's Contracture and trauma to the hands. This research was mainly motivated by the filing of workmen's compensation claims. No solid statistical link was found. Here's an interesting paper:

http://pmj.bmjjournals.com/cgi/content/full/81/957/425

Note that right at the top, it says that "A genetic susceptibility to the disease is the only generally agreed aetiological factor."  

I developed Dupuytren's in my late 40s for no obvious reason. The hand surgeon said that was a bit early and told me matter-of-factly that because I had an agressive case, Peyronie's was likely to follow.  He was right.  

What is the definition of "Peyronie's Disease" anyway? A better term, which is also used, is "penile fibrosis".  If you have an injury, and scar tissue forms and causes a bend or a hinge, do you have "Peyronie's Disease"?  Sure, if you want to call it that,  and I think that's how the term is becoming used today. Someday when it's well understood we may have a differentiation of terms reflecting the various causes of this fibrosis.

[Hawk]

Just to share a thought.  I often hear men say they put off seeing doctors or they do not look forward to the exam.  It may be an age thing, or maybe just an individual thing, but I am in my mid 50's and for at least several years, I have not had one whit of hesitation to see a doctor about any body part.  Maybe my prostate surgery did it, who knows.  Soon after prostate surgery my nurse with the NY attitude had  barked at me . "You are not going anywhere until you can bathe yourself, but I had a nurse's aid who was a sweet order black woman offer to take me in the shower and scrub me head to foot while I still had 2 hemovacs a catheter, and an IV. It was glorious.  It was like it brought me back to the land of the living and I felt no embarrassment even when my tough nurse came in and yelled in the shower that "we don't usually provide private geisha girls here" (while my sister sat out in my room laughing).  My nurses aide told her to leave us alone I would be out shortly.  I hugged that dear lady before I left the hospital.  

On my first visit with Dr Mulhall for ED, his nurse and my wife sat in a room and watched me inject my penis with bimix.  She gave me moment by moment instruction "don't hit that surface vein, don't twist your penis, pull it straight out".  She came back after the bimix kicked in and said, well stand up and open your robe and let me take a look at how we did."  There I stood while the nurse and my wife assessed my erection.  Before I get dressed I told her. " Jen, I would like to really thank you because this is about as close to kinky sex as I have ever experienced".  We laughed, I got dressed and drove home.

Prim and proper young ladies have to usually go see male doctors, lie spread eagle with their feet in stirrups while they get probed.  So, a male or female doc examines your penis.  Please focus on making him do his job.  I don't say this in any disrespectful way, I just want you to relax and focus on your list of questions for the doctor, and every word the doctor says.  Be matter of fact, flop it out, and demand answers and a competent exam..

[Old Man]

Note to backup Hawk's post below:

I think that it was the prostate cancer surgery for me that relieved me of my apprehension of being examined by a lady uro/doctor. After my male uro retired, he turned me over to his able assistant, the lady uro. She had considerable experience with Peyronies Disease in a VA hospital and my regular uro thought she would be good for me since I had Peyronies Disease from the age of 24.

It only took about two or three visits to her to convince me that she knew her stuff and that I was in good hands. She is responsible for helping me develop the Peyronies Disease exercise routine that did away with my Peyronies Disease.

To this date, many years later, when I go in for my annual PSA checkup, she meets me with a hug and a kiss on the cheek! There are some doctors that just have a very good "bedside manner" and others could care less about their patients personal well being, etc.

Anyway, being embarassed about being touched by the opposite sex in a medical way should not cause any problem. Most of the time the situation helps with the final outcome of your treatment.

Just a few ramblings thoughts about the subject.

Old Man

[Liam]

Biopsies up the behind, catheters, sponge baths, suppositories, feeling knots in the penis and sitting on a toilet with the big D while throwing up and holding my incision (maybe the worst I have felt in my life) with the 11th floor nursing staff looking on is enough to cure anyone of feeling embarrassed.

My family doctor told me one time as I winced at the digital rectal exam, " I don't know why your complaining.  I'm the one with the bad end of this job."

[Lunchbox]

I wasnt sure what thread to ask this, so I figured the open thread would be best.  I first noticed my Peyronies Disease 3 years ago while taking an extremely long dosage of Levaquin (which I think may be related, but thats another topic).  I started off with three plauqes.  after two years all three went away and I was left with a 45 degree bend.  A year ago another small one showed up that caused a dent.  At this time I have a difficult time locating the latest plauqe even thought the dent remains.  Instead there is what feels like a hard vein.  It starts at the midline of the shaft and travels right into the middle of the dent.  The "vein" feels very hard when erect, but is barley noticable when flacid.  I causes no pain or discomfort.  My question is this.  Could this be a new plauqe?  Or possibly a thrombosed vein?  It has remained unchanged for 7 weeks now.  The funny thing is that 3 years ago my penis looked like a bicycle grip and I wasnt worried a fraction as much as I am now.  Funny how researching something on the internet will scare the crap out of you.

[Liam]

Look back to my post on July 3 regrding Mondors and varicocele.  It's worth getting it checked.  It is treatable.

[Lunchbox]

Thanks for the reply Liam, I will look into that.  I also wondered how many Peyronies Disease patients have recurring plaques in different locations.  I am not reffering to plaques that seem to remiss, then reappear.  Rather new plauques that form after others have gone.  Do most men have a single episode of Peyronies Disease where the plaque(s) resolve and they never have more plauqes form?  I realize that even after the plauqe is gone there is damage done that may not be reversible.  But is there end in sight?  I can live with the bent-up dented mess I have now.  But what are the chances of more and more plauqes forming as the years go by?

[Hawk]

Lunchbox,

I have a response to your question and to an earlier comment.  Out of 14 men polled that had a 1 year stabization of plaque, 9 experiencer re-activation of Peyronies Disease within 5 years.  https://www.peyroniesforum.net/index.php/topic,244.0.html  

I think it is safe to say that if the disease reactivates its activation is not confined to a mature stable plaque getting a new lesion on old scar tissue.  Peyronies Disease when active is a spreading process of scar tissue over-running healthy tissue.

while taking an extremely long dosage of Levaquin (which I think may be related, but thats another topic).  I started off with three plauqes.  

Levaquin is a fluoroquinolone. As such if anything it should reduce fibrotic activity not cause it.  Here is a brief quote from an anti-scariing document on our "Resource Library" Fluoroquinolones permit a less invasive means for treating a patient susceptible to scar tissue formation or related pathologies... Anti-fibrotic activity of specific fluoroquinolones, ciprofloxacin and ofloxacin, have been substantiated through extensive in vitro testing on mammalian fibroblast cell lines. Optimization is ongoing.

[Lunchbox]

Thanks for the response Hawk.  Regarding the quinolone family of antibiotics; it is not the medications ability to reduce or inhibit the growth of scar tissue that prompts to say it may have played a role in my case.  It is the drugs ability to reduce the elasticity of connective tissue.  The drug could have made me more susceptible to injury, then the scar tissue could have formed after I stopped taking it.  The only reason I find it plausible is that they happened around the same time (taking levaquin and Peyronies Disease).  I go into more detail on a post under the "Causes of Peyronies Disease" thread.

[Hawk]

Interesting point.

[howcanthisbe]

old man, in your post below you said you "did away" with Peyronies. Do you mean your peyronies is gone now? I wanted to know because im concerned maybe the dents from Peyronies Disease are permanent? Ive really been examining myself lately and have noticed I have a slight dent area all around my penis almost yet you cannot see it at any time during erection except for on left side. But I have I think a very slight "hinge". I wanted to know is it possible for this hinge to go away on its own or with treatment. If anyone can answer this I would be grateful. I havent given up hope, I think we can beat this thing. One more thing, you claim old man you have cured or near cured your Peyronies Disease, but yet some of your post you say you are totally impotent. You are impotent from Peyronies Disease or something else? Im saying would you have been impotent anyways from another cause or was it Peyronies Disease? Thanks

[howcanthisbe]

I do think Rico has a point. He said he had a injury that got worse the more he dwelled over it. If I have Peyronies Disease for sure I have had it now for almost 4 years. The only things that I noticed was a slight upward bend, erection wasnt quite as hard and the head of the penis didnt get as hard as it should have. Now lets say I had it for those near 4 years, if I did it was stable the whole time or maybe even getting slightly better. Now in the last 1-2 months since I have been obsessed with it sense I thought I have it I have a small dent and a slight "hinge effect". Now it seems to keep getting worse slowly as the dent seems to be spreading maybe but im not sure. My point is it was stable for almost 4 years, now in the last 2 months since ive been obsessing over it has gotton worse. It could be its active again, but I seriously doubt it. Its funny it happens right when im worrying about it. Now I really think its critical for me to get a girlfriend and have her accept this thing so I wont worry so much about it. Lets think about it, the mind is so powerful. we could be worrying about it and...... maybe our mind already thinks we have it now and reconizes it and it becomes reality and gets worse.. I know this sounds crazy but people can move stuff with thier mind, and yes some people can really do it. We dont even fully understand the brain, it could be doing all sorts of things. I really believe thinking its getting worse makes it worse. I found a trend a few years back when I was trying to gain muscle. When I thought I was losing muscle I did, when I thought I was getting bigger I did. Im telling you, theres some truth to this. Im going to start thinking positive and just realize if it gets too bad there are always some options to make it better. Im telling you since ive been obsessing over it my condition has worsened for sure. Anyone have any thoughts on this? Thanks

[Liam]

Lunchbox,

I had sterile phlebitis is my arm from an IV.  I was told to apply heat and was given Cipro.  Curious, huh.

HCTB,

While I do not believe in Psychokinesis ( http://en.wikipedia.org/wiki/Psychokinesis ), I do recognize the brain (meaning the physical organ) is capable of many wonderful things.  Even if we assume the "mind' could move objects, that would be on the bottom of the list of the things the mind could do.  The hands can move things.  No, I believe the closest thing to a "super" natural ability we, as humans, have is rational thought.

Positive thinking is only beneficial when it leads to positive action.  

I was a body builder.  When I first realized and believed I could get big, I started going to the gym.  I got big.  The thought and belief preceeded the action.  But, without the action, I would have remained a "98 lb weakling".  

How does this relate to Peyronies Disease?  We should all take action.  We should study, learn and apply the knowlege we have.  Get a real diagnosis.  Focus on real, testable science.  Have positive thoughts and do positive, rational things.

[Hawk]

We can all segment our lives into thousands of things we were doing before we got Peyronies Disease, or before it got worse.  We struggle so hard to simplify the mystery of Peyronies Disease  into concepts we can get a grasp on.  We make cause and effect from coincidence with absolutely no pattern of evidence and no reproducible effects.

This does not mean don't think out of the box or try sensible options.  It means we must all remember that the strides made and those that will be made, will be made based on rational scientific evidence, not superstition, anecdotal evidence, coincidence, or faulty thought processes.

We need to embed this information in our minds until drawing on it is second nature.

http://www.peyroniessociety.org/evaluating.htm

[Tim468]

Catching up...

Be careful in extrapolating in vitor effects, or even case reports to all of our own physiology. For instance, infections cause increased levels of activity of anabolic agents (called eicosinoids) in the blood that should lead to increased muscle growth. But they also cause increases in other eicosenoids that lead to muschle degradation (cataolism) and the NET effect is one of degradation (why our muscles waste with chronic disease)(this is just an example of something I have studied in my research career).

So we need to be cautious in attributing cause and effect - quinolones could easily cause increased scarring through the mechanisms discussed, or decreased scarring directly - either hypothesis is easily argued. More interesting is that two members here have discussed an apparnet association.

Old Man developed impotence from his prostatectomy. One with such neurogenic impotence can achieve an erection with a VED or an injection (ouch!). But It doesn't matter whether his erections are caused by excitement or a VED - they are straighter by report.

Tim

[Lunchbox]

Tim and Hawk,

  I agree with both of you.  It is difficult if not impossible to say that one cuase is mutually exclusive to the effect resulting in Peyronies Disease for any one specific case, much less all cases.  I personally believe that several variables need to be in place for one to come down with a noticable case of Peyronies Disease.  I say noticable because I think that many men suffer from Peyronies Disease, but with such mild cases that they never realize it.  Genetic predisposition, diet, smoking habits, level of sexual activity, condition of prostate, auto-immune conditions, and on and on.  I think a combination of numerous things could determine weather a person suffers from Peyronies Disease.  I dont think that levaquin or cipro alone could cause Peyronies Disease.  I was stupid enough to take levaquin for 52 straight days.  My fault for not realizing I was only supposed to take it for 10 and the refills were only there incase it flared up again.  I also had tendon damage in my elbows and heels from it.  So the levaquin, coupled with the new girl friend (now fiance) that I was having rough sex with 4 times a day may have been what set my case off.  Or they could be totally unrelated, who knows.  All I know is that I have inured my penis several times before.  Once so badly that it was swollen 5 fold and bruised with no signs of Peyronies Disease.    

[ComeBacKid]

Does anyone notice their penis bent very noticeably when semi erect, but as they become more erect it straightens out more and becomes just about straight?  When my erect penis is bent the sides are rock hard, yet my penis still becomes straight, I'm very curious to see what Dr. Mulhall has to say. For me it seems that my tunica is contracting and becoming hard, and bloodflow seems to relax it and soften it.  I'm wondering if pentox will increase bloodflow enough to do this, any thoughts?

ComeBackid

[Hawk]

None, except when you see Dr. Mulhall, have your questions written out and give him a copy so he knows how many you have and stays until the list is finished.

[Liam]

I had a Dr. tease me about my list looking like the "Dead Sea Scrolls".  He did admit it was a good idea.

[BLBC]

Thank you so very much for an outstanding site. While I have looked at a few Peyronies Disease sites, this one is by far the most informative and professional. I appreciate all that I have learned over the last couple of days. Because of you my husband and I have been more able to discuss his recently diagnosed Peyronies Disease.

I find all of you men (and the women too) absolutely wonderful so hugs to you all!

While reading about a heart condition and treatment of a friend my husband asked a question:

Some times while performing angioplasty a surgeon will place a stent/stint (to continue to help the plaque in the artery from continuing to grow toward closure of the artery). While I understand that plaque causes the bend in a penis, would a type of stent help with straightening a penis?

To me it seams illogical as catheters can be a cause of Peyronies Disease and I think it would be an irritant. To him it seams logical. Any thoughts?

Also is "plaque" scar tissue as in adhesions or as in build up in an artery or on teeth. Simplistic examples, I understand, I'm just trying to grasp this.  

[George999]

Hello BLBC,

In regard to your question about plaque, I think it might help to understand that plaque is actually a generic term like cement.  And like cement, it can be made of all different kinds of components.  Clearly the cement you use on your model airplane is very different than the cement you use to build the foundation of your house.  But what they have in common is that they start out as a semi liquid and then become hard.  In a similar way, plaque is an amalgam of various biological components that meld together in the body and become obstructive or obnoxious.   And while inflamation is a common theme in the development of most plaques, the various forms all have their unique characteristics.  For example, dental plaque is very different from vascular plaque, but both can harden and become calcified and damage both teeth and arteries.  I have found Wikipedia ( http://www.wikipedia.org ) to be a great resource for understanding some of these terms, including Peyronies itself.  I think that once your husband understands more about the structures of the penis and how they are affected by peyronies disease, it will become obvious to him why a 'stent' is not the ideal solution.  There are however, surgical proceedures which involve a 'stent-like' approach (actually a prosthesis).  These are normally used as a last resort when more conservative measures have failed.  The function of an artery is very straight forward, it is simply a pipe to carry blood, the function of a penis is extremely more complex and demanding.  Thus, an artery is far easier to 'stent' than a penis.  Hope this is helpful and I wish you and your husband the very best!  He is very fortunate to have a caring and understanding wife.  I am thankful as well for a wife who has been very supportive and understanding.  That is something that no amount of money can buy!

[Liam]

Awesome explanation, George.  

BLBC,

One other source is on the website.  Under "The Disease" find "Glossery".  There is a great illustration there.

We are all happy you and your hubby are here .

[BLBC]

I think I may understand, realize the only thing I have to reference with regards to my own experience is adhesions in my knee. I heal too quickly, after ACL (knee) surgery adhesions formed in my knee that needed to be forcefully broken up on a couple of occasions. Yes, I realize that the knee is a joint and is meant to bend and therefore forceful manipulation is effective whereas this is not possible in a penis (ouch and O so wrong).

I think this may be a visualizing thang. I am see plaque as scar tissue and my husband is seeing it as "build up" (arteries, teeth)  for lack of a better term. I believe I understand a bit better now although I must admit my head is reeling with possibilities and ideas. Ya'll really do need a women's advocacy group to take this main stream and I will do all that I can.

There is a company that is cutting edge and working on cloning cartledge and replacing healthy cell in knees to regenerate it. It is in use now (I met a gal who has had this done) and they have several other medical breakthroughs one dealing with scar tissue. Some others that affect 3 to 4 thousand patients a year.... Come on we all know there are many more Peyronies Disease sufferers than that! I will be contacting them to see if they are currently looking into Peyronies Disease and let them know of the need. After reading their web site it appears (to me) that they may be interested.... We'll see

OK for giggles (because if you don't laugh your just gonna cry) I liken Peyronies Disease to my snatch (sorry for being so blunt, but that's the way it goes with me) being suddenly glued shut. Shudders in an ohh so wrong way!  Women would not sit quietly and accept this so I refuse to sit quietly and accept what this is doing to my husband physically and mentally!

[Hawk]

Here is a link that Liam referred to.  You will find much more information on our Website and you can go there any time with just one click on the PDS WEBSITE button near the top of all forum pages.  

The direct link to a good image is http://www.peyroniessociety.org/glossary.htm

[Tim468]

I think that "placque" is a bit of a misnomer. I think that "scar" is closer to reality.

The issues with Peyronies Disease are that the development of a non-stretchable tissue where one is supposed to have stretchiness can develop in slightly different ways. for many, there is a *transformation* of smooth muscle cells that are involved in the abilty of the penis to do it's "turtle" thing (wherein it shrinks) INO fibrotic cells that contract gradually to a shorter length. Myocyte (muscle cell) becomes what is termed a "myofibrocyte", or "fibrocyte". fibrotic type cells are commonly found in scars and other organs that are fibrosing - fibrosis is a response to injury.

As part of wound healing, think of an accelerator and brakes in a car. Fibrosis may be part of the initial wound response, but as the wound heals, the fibrotic cells are supposed to go away and disappear. A failure to stop fibrosing (lack of a turn-off switch), or failure to stop *being* (the cells naturally die out and this is called "apoptosis"- a failure to undergo apoptosis may also be part of the problem).

Thus, too much fibrosis (accelerator to the floor) coupled with failure to remodel and heal (brakes don't work either) means that the formation of a "scar" goes ahead unfettered by any biological restraint. It is very probable that the "wounds" that cause Peyronies Disease are happening to every single male every single day, but their wound healing is not off-kilter, and so the natural response runs it's course without ever forming a contracted scar of any sort.

Finally, some of the placque may represent *transformed* tissue - that means that normal cells are replaced by scar tissue. so not only does the tissue not stretch, if you cut it out, there is a left-over dent where it was where the normal tissue is no longer present. This is a different concept than, say, a placque in the artery that might seem to be able to be "reamed out", eaving virgin tissue behind. that is why something to place into the defect is important for surgeons who remove scarred tissue - the placque is not laid on top of the normal penile structures - it replaces it.

Tim

[Barry]

BLBC,
Firstly,welcome to the site and forum. We are always pleased when another Lady joins our ranks. Your perspective from a female point of view gives us all a greater insight of how the gals are dealing with Peyronies Disease. I would like to suggest that you get together with Christine and say hi. She is a great gal, a dear friend, and a soulful contributor to the PDS.

On another note, I have spoken to a urologist and my cardiologist asking your very question about stents added to the penis  as a sort of treatment, ( I have three). To make two long stories short, both doctors concurred that because the coporus cavernosa is elastic, a stent would be a medical/surgical impossibility.

Also, I love your analogy about your "snatch" (no sorries necessary) slamming shut. I must admit that I too have pondered similar thoughts. What an equally dreadful dilemma to that of a man having Peyronies Disease.

Regards,
Barry    

[Blink]

BLBC , it is a wonderful thing to have women on board! Many men with peyronies probably think this is "their" disease, not realizing the effect it is having on their mates. Welcome, Welcome, Welcome!!!  I read that you are going to contact someone to see what kind of research that they may be doing that could effect peyronies disease. Please let them know that they will have plenty of willing participants, should they want to do a study. We are all looking for that cure, and many of us would gladly help to find it. Thanks again for your interest in " our " disease. Keep the Faith, Blink

[BLBC]

Hawk, Thank you so very much, I am aware of the website portion of this site. It is where I started my "education" it is very well put together, you should be very proud of this site!

Tim, I have read your posts with eagerness, and this one has helped me to understand the plaque/scar tissue better.

I must admit I do enjoy reading the research studies. My brain is able to pick them apart very well as I have an analytical brain (except for spelling, so sorry!). I have always been fascinated with picking apart most anything to see how it works weather it be law medicine or a physical object, I do however stay away from anything connected to a gasoline engine! LOL!

I so thank you all for taking the time to explain this to me. So give me your opinion of this company and what they are doing.... While I know there are some products they have that are most likely "byproducts" of research that was intended for a different malady it appears they "ran with it." This is a good thang. I also realize that company "mission statements" can be and in most circumstances are BS.  

http://www.genzyme.com/corp/structure/corp_home.asp

OK so if you'll excuse my fantasies...... I see them combining the research I had seen on cloning rabbit penis's and what they are currently doing IRL with knee cartilage. Hey, as I see it dream, dream big and shoot for the stars. Never give up, never give in!

[BLBC]

BLBC,
Firstly,welcome to the site and forum. We are always pleased when another Lady joins our ranks. Your perspective from a female point of view gives us all a greater insight of how the gals are dealing with Peyronies Disease. I would like to suggest that you get together with Christine and say hi. She is a great gal, a dear friend, and a soulful contributor to the PDS.

On another note, I have spoken to a urologist and my cardiologist asking your very question about stents added to the penis  as a sort of treatment, ( I have three). To make two long stories short, both doctors concurred that because the coporus cavernosa is elastic, a stent would be a medical/surgical impossibility.

Also, I love your analogy about your "snatch" (no sorries necessary) slamming shut. I must admit that I too have pondered similar thoughts. What an equally dreadful dilemma to that of a man having Peyronies Disease.

Regards,
Barry    

Barry, First I have had discourse with Chris, she is a wonderful woman! As I see it when a man has a partner Peyronies Disease is not an individuals "problem" it affects both people in the relationship. Period, no if and or buts. I love my husband and would kill and or die for him, simply put it is life. I did see an analogy someone used about womens breasts being a different size.... Ummmm well that's an easy fix as there is already breast augmentation so it made no sense to me. Needless to say I had to put it into "my prospective" yes, I realize that my brain works in an unusual way. I deal with it and so do those who are close to me, well they're force to anyways!  

[BLBC]

One of the first things I can see that is needed is to push for a rephrasing from Peyronies Disease to Peyronies Disorder. Men (meaning all of you with Peyronies Disease!) are not "diseased." I see diseased as something that is transmittable, communicable aka you can give it someone else! Have I looked up the proper terminology? No, but hopefully you see where I am coming from. Good gawd it is not possible to transmit a disorder where it is possible to transmit a disease. Peyronies Disorder, you own it, it is unfortunately yours and your partners (if you have one). Luckily you can not transmit it to someone else. A "disorder" is more "acceptable" (how FU is our society?) to talk about than a "disease" therefore it would be more acceptable for those who are in hiding to come out, so to speak. The more men who admit to having this disorder, the more it will be seen by the medical researchers and therefore be studied more, therefore the more likelihood of real help and (shall we dream) a cure being found.  

OK so this is my logic, my prospective, my warped way of thinking.....

[Blink]

I too do not like the term "disease" when referring to peyronies, but that is what "they" call it. I feel like I have leprosy or something. I am wondering why that terminology came to be. I do know that in this country, in order to "treat" certain conditions with drugs, they must classify the condition as a disease. If I am wrong about this, someone please correct me. I guess I'm into conspiracy theories a bit. I don't trust anyone if big money is involved. I also believe that not enough research was being done because of the fact that the drug companies didn't think there was enough money to be made. Sometimes reality sucks. Keep the Faith, Blink

[ComeBacKid]

I found this on the wikipedia...

Disease Definition

Blink keep the faith buddy, you shared that number with everyone here to contact Auxillium, that karma will come back to help you in the end!

ComeBackid

[Tim468]

I don't much care what we call it as long as we are capable of understanding it.

My Peyronies Disease came on insidiously and without apparent cause. It has crept forward as a "disease" over the years despite my efforts to stop it. So, for me, the model of a "wounded penis" does not work as well as one of some sort of impaired process of ongoing injury/repair.

I just wish I knew why.

Tim

[George999]

Tim, I agree totally with the concept that this plaque/scar tissue thing is a matter of a normal process gone amuck.  Most injuries of any consequence seem to generate a temporary lesion that gradually disolves and disappears.  The challenge with peyronies is how to stimulate this 'stuck' process to move forward in a normal healing process.  But I would suggest that another gremlin here would be an inaproppriate amount of inflamation that puts plaque/scar tissue formation in overdrive.  I would also suggest that arterial plaque has some real scar tissue qualities, even though it is usually sandwiched between healthy tissue.  But with the components of the various plagues/scar tissues being different, one would indeed have to approach them differently pharmacologically in any attempt to resolve them.  However, there might be certain substances out there that would have a positive effect on multiple types of plaque/scar tissue.  And where scar tissue has completely replaced healthy tissue, that alone should not preclude a cure.  There has to be a natural process whereby the scar tissue shrinks as the healthy tissue invades from the perimeter.  So I am really optimistic in regard to peyronies, but I suspect the process of a cure is going to be slow and deliberate rather than a magic overnight formula (which is more suited to temporary symptomatic relief).  So the question I am always asking myself is "how can I create the kind of healthy environment wherein my plaque/scar tissue will slowly but surely mend itself."  In other words, how can I tip the balance ever so slightly to halt and reverse this malignant process.  And the first step in that process for my has been to try to attack inflamation on as many levels as possible.  But thanks for the really great discourse on the healing process, it was right on target to my thinking.

[Tim468]

George:

Some thoughts on the actions of sildenafil, pentox and arginine. Just a brief note in addition to what follows; sildenafil (viagra) has been associated with both improving Peyronies Disease and causing Peyronies Disease. People chould remember that when reading such studies...

I was reading more about NO and the actions of pentoxyphylline and arginine - found a great article. In this, they used cell cultures derived from placque and normal tunica albuginea (TA). They found that the coincubation with TGF-Beta caused increased inflammatory changes in cell culture for BOTH TA and Peyronies Disease cells lines. Furthermore, they found that Pentox, arginine and sildenafil all caused that process of TGF induced inflammation to stop or slow greatly (more on this later). The article is:

L-Arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Eliane G. A. Valente, Dolores Vernet, Monica G. Ferrini, Ansha Qian, Jacob Rajfer  and Nestor F. Gonzalez-Cadavid in Nitric Oxide, Volume 9, Issue 4 , December 2003, Pages 229-244.


They then used a rat model. In this model, they induce an injury to the TA that histologically mimicks Peyronies Disease (controls get injected with saline, and do not develop Peyronies Disease-like lesions). They found that the feeding of arginine, sildenafil, or pentox for the 45 day period that it normally takes to cause this lesion was protective - nearly completely protective.

This means that - in their model - the inflammatory changes are mediated via NO-dependent pathways. When one gives an "NO-donor" (thus increasing levels of NO - whether it be in a petri dish or a body), the NO that is briefly freed up has some actions. Specifically, it increases cyclic GMP (cGMP) and cyclic AMP (cAMP) which in turn activate the antioxidant pathways.

Here is the abstract:

"Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGFβ1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) -arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and -arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, α-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When -arginine (2.25 g/kg/day), pentoxifylline (10 mg/kg/day), or sildenafil (10 mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF β1, each treatment resulted in a 80–95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions."

What got my attention, and which goes to the heart of what many of us dream of, was addressed in their discussion of the results:

"In summary, we propose that pharmacological interventions aimed at elevating NO, cGMP, or PKG levels, and possibly cAMP, in the penis are potentially useful for the treatment of Peyronies Disease, and more speculatively, for other fibrotic conditions. This work has not addressed the question on whether this intervention would induce regression of an already well-formed plaque, but comparison of multiple gene expression profiles in human Peyronies Disease and the related Dupuytren's disease suggests that both conditions are in a dynamic cell and protein turnover involving replication, differentiation, apoptosis, and collagen and extracellular matrix synthesis and breakdown [8, 9 and 10]. Therefore, modulation of any of these processes may eventually involute the plaque, as has been observed in generalized fibrotic conditions [68 and 69]."

FYI, those last two references are:
68. H.S. Lee, G.T. Huang, L.H. Miau, L.L. Chiou, C.H. Chen and J.C. Sheu, Expression of matrix metalloproteinases in spontaneous regression of liver fibrosis. Hepatogastroenterology 48 (2001), pp. 1114–1117.

69. T. Lai, J.T. Fallon, J. Liu, J. Mangion, L. Gillam, D. Waters and C. Chen, Reversibility and pathohistological basis of left ventricular remodeling in hibernating myocardium. Cardiovasc. Pathol. 9 (2000), pp. 323–335.

One final note for those who grow impatient with a lack of obvious results: The single case report on pentox leading to improvement (written by Dr Liu) showed improvement in a man with long standing lesions after TWO YEARS of treatment. Patience is a virtue...

Tim

[Lunchbox]

A quick "off the current topic question".  I have read that during the acute stage of the scar (first 18 months or so) that it often changes shape and even location.  Have any of you experienced this?  I have noticed that all four dents I have had reacted the same way.  Once the pain went away the dents became bigger, but more shallow.  After the dent is gone I am left with curvature (if it was a large dent), but no palpable scar.  The one I currently have on the right side has gone from 1/8" to now about 3/4", but it is very shallow.  And I cannot locate a scar any more at all.  Just a spongy "vein" like thing.  Fortunately the pain is gone as well.  Any thoughts?

[George999]

Lunchbox, I am not really sure that this is off the current topic.  Tim and I have been discussing a bit the role of inflamation as it relates to peyronies.  And if inflamation indeed plays a crucial role in the peyronies syndrome, it makes perfect sense that the plaques would be able to move around chamelion like, since as one area finally heals, another becomes inflamed on the process continues.  And I would suggest that another issue here would be the actual way in which the penis is 'engineered'.  The structures of the penis seem to have a near perfect engineering and when that perfect balance is altered by the presence of a plaque, it really could open the door to a syndrome of an ongoing sequence of low level injuries that tend to perpetuate the problem. (Much like when you injure your right leg and then you have problems with your left as it now must bear more stress.)  I think that is one thing that interests Tim and myself regarding the potential impact of inflamation.  And to answer your question, yes, I have seen my plaques move around, grow and shrink, and exhibit all sorts of weird behaviors.  And although peyronies has some general commonalities in terms of behavior, its all very unpredictable when it comes to specifics.  I have really tried to major on anti-oxidant/anti-inflamatory supplements and have been very satisfied with the results.  One of the things I have requested of my doctor was a check on CRP/homocystine, and he did it and confirmed that my levels are currently down through the floor, which is what I wanted to see.  But I am intrigued with the information Tim has just shared regarding arginine, pentox, and sildenafil.  I have looked at arginine before and have been turned off by potential side effects.  But most of those seem somehow related to the lysine/arginine balance.  I think if I could find a good balanced formulation of these two amino acids, I would be severly tempted, especially now that Tim has brought up the inflamation link.  I previously viewed arginine as only a NOx precurser and NOx only as a vasodialator and was really unaware of the inflamation link, but of course it makes perfect sense.  More blood, more oxigenation, less inflamation.  So Tim, do you know of a good balanced arginine/lysine product?

[Liam]

Didn't they used to inject some kind of anti inflamtory into the penis for Peyronies Disease?

[Old Man]

Liam:

Many years ago I was told that some uros/MDs did inject steroids into the penis for Peyronies Disease. It was supposed to break down the buildup of plaque/nodules, etc. However, for some reason, it just faded away and as far as I know now, it is not used anymore. Probably did not work.

I guess when verapamil came on the scene for Peyronies Disease, it kind of took off like wildfire and everything else just took  a back burner. It seems like steroids should help with the inflammation stage, just MHO. I get the steroid shots for knee and back pain flareups, but whether or not this would be related to Peyronies Disease, have no clue.

Regards, Old Man

[George999]

I suspect that for suppression of inflamation to be effective against peyrones, it has to be ongoing.  That would be difficult to acheive with steroid injections which are more suited to a single treatment type approach.  What would be interesting to me would be to use an enzyme formula injection(s) to disolve the plaque while at the same time covering with an anti-inflamatory oral regimen to prevent a reoccurence.  But just killing off the inflamation does not eliminate the plaque, it just throttles back (hopefully) the generation of additional plaque.  But if you can kill off the generation of new plaque, it would seem that they old plaque would gradually be resolved by natural processes, and that is what I am aiming for.  But the ultimate solution would be something like collogenase.

[SteveW]

As some of you are aware, my stress levels the last 3 1/2 weeks have been incredibly high.  Lack of sleep, worry, grief and longing seem to be paramount to my existence right now.  Oddly, my severe Peyronies Disease seems to again be active.  The pain has returned and the curve seems to be worsening slightly.  

Any other men have opinions-experience with the possible effects of stress and emotions on our Peyronies Disease?