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

[Helios]

Hello,
I am a 32 year old healthy male that is a new member to this forum. I have never been diagnosed with Peyronies, though I suspect that I have the condition. I have a Dupuytren's contracture on my right hand, which has developed over the last few years, but has never developed beyond a bump. My penis curves downward, though not to either the left or the right, only down and there are no palpable plaque deposits. It had been like this as long as I can remember, I do not recall any trauma, it is not painful and the only hindrance has been that it makes some sexual positions difficult. In my experience over the years with various sexual partners, they have all seemed to like the curvature. I do not suffer from ED and my girlfriend of several years appears happy with my shape and size. I know that there have been some reported connections between Peyronies Disease and Dupuytrens,and I guess that I am confused as to whether it's Peyronies Disease that I have or just a weak ligament? Does anybody have any success stories treatment-wise they may want to share; I am surgery adverse. I have heard taking Vitamin E may help, though no studies seem to substantiate and that Collagenase may prove to be beneficial? Also, what is the likelihood of Peyronies Disease worsening over time...i.e. further curvature? Thank you.

[Hawk]

Welcome to the PDS Helios.

You are correct that there is a strong connection between Dupuytrens and Peyronies Disease however you state that your curve has existed as long as you can remember.  That is a very strong indicator that is is not Peyronies Disease.  You currently have no palpable plaque, pain, no history of trauma, no history of a rapidly developing deformity or loss of size.  You have no ED.  In conclusion, you have no symptom of Peyronies Disease.

If your curve existed in puberty, it is surely a congenital condition and not a progressive disease that can be treated short of surgically modifying the shape.  With your functional status, you would be ill advised to pursue a surgical route.  

Enjoy the normal yet unique features that make you an individual.

[bigdaddy]

My husband has this problem for 3 years it has taken a great deal out of him. Can any one suggest something to say . I dont complain .I just tell him it doesnt matter how we get there as long as we both are happy. But it still bothers him. I would guess you fellows understand  

[Liam]

You are saying and doing the right thing.  My wife has the same approach.

It still bothers me.  Here is a thought I bet most married men with Peyronies Disease have had.  My wife could go out and find another man and I will be alone for the rest of my life.  Another woman would never want me with this.  Why does my wife still want me?  I am damaged goods.  I can rationalize it all I want.  The fact is I will never totally get over this emotionally.  The best I can do is cope, which I do very well.  I have good days and bad days.  The fact my wife is there, doing nothing special, saying nothing special is the best support there is.

Two specific things I can say are:

1) Let your husband know when he has done something to please you (even if he already knows).  Its a HUGE boost.  Not just sexually either.  Feeling needed (not just wanted) is SO important.

2) If he complains or "gets down in the mouth" about his situation, thats OK.  Change the subject or the situation.  Men (speaking for myself) don't always want to "talk about it".  Adding to the "drama" only makes things worse.

These are a couple of specifics from my perspective.  We are all different.  You are going through this condition, too, though.  I have had to communicate to my wife and she with me even more than healthy married couples (which we are) normally do.  I hope you are in the ladies group, also.

I like the way you said, "it doesn't matter how we get there as long as we both are happy".  That goes a long way.

This probably should be under psychological aspects topic and I may move these two post later.  I just wanted to make sure you got the response.


Liam

[j]

What Liam said.

[MUSICMAN]

So much information to read and try to understand.  It seems that I understand that even if the plaque
reduces or disappears the curve still remains. Am I right on this? If drugs like Verapamil are to reduce
plaque but you still have the curve what is the point?

So the hard question is what is the best option to remove the bend?

[Hawk]

Musicman

You are correct.  it is a lot to research and understand.  Let me be blunt, direct, and cynical for a moment.  There is no good answer to your question because we all have our preferred alternative or non-traditional treatments.  Further, no two doctors have the same view because no one has ever cured and no one can cure Peyronies Disease.

Some cases improve on their own (clearly less than 15%).  Some stabilize (maybe 50%).  Many steadily progress or progress in a series of active stages separated by periods of seeming stability.

Plaque which is not definably different than aggressive scar tissue is the only cause of a bend.  If it goes away the bend goes away.  Keep in mind however that just because it cannot be felt with the finger does not mean no plaque is present.  Also, plaque often reduces in size as it matures but that often only means it is not as plump or raised.  It may even mean that it is contracting more and increasing its impact.

This is not to discourage you but to lay the facts on the table.  This forum is made up of 10,000 posts.   Probably a majority of them deal with aspects of what patients think is the best treatment to promote stabilization or improvement.  The only real way to answer your question would be to repeat those posts or suggest you go to the "Newly Diagnosed Highlights" from the forums home page and begin to become a student of your condition..

Regards


Hawk

[George999]

I really think that one thing that confuses a lot of people is the tossing around of terms like "plaque" and "scar tissue".  Even the professions can't seem to agree on the precise definition of these terms.  The rest of us get mighty confused sometimes in the process.

But if I can eliminate these terms and try to be more descriptive.  Peyronies makes its presence known by both "lumps" and "deformity".  Lumps occur when there is an almost tumor like process going on that results in an accumulation of collagen.  These lumps, in and of themselves, though abnormal and definitely not desirable, are not the cause of the deformities although they may or may not coexist with the deformities.  The deformities are actually caused by another process.  This is the process whereby collagen and fibrin displace elastin in the tissues.  Thus a person can have a significant sized "plaque" and exhibit little or no deformity as long as the localized tissue retains sufficient elastin.  On the other hand, there may be no lump at all, but if the tissue is depleted of elastin, there will be deformity.  In some cases, both conditions are concurrent.  When you treat such a condition with the objective of getting rid of collagen, the result will be that the lump will disappear, but since the remaining tissue is elastin deficient, it still refuses to stretch, which results in the deformity remaining.  This is one huge problem I see with the collagenase approach.  If whatever strategy proposed does not take into account the rejuvenation of elastin, it will be of no use in eliminating deformity.

- George

[voulezvous]

Very interesting & informative posting, George. Thanks for the clarity.

I guess the obvious question for those of us with deformity is "what helps to restore elastin?"

It sounds as if your are saying that all the stretching & pumping in the world won't restore what has occured.

[George999]

It sounds as if your are saying that all the stretching & pumping in the world won't restore what has occured.

I'm really not saying that at all.  In fact, I suspect that RESPONSIBLE use of a VED and/or plenty of normal healthy erections may well help improve elastin levels.  Also, Pentoxifylline has shown some ability to apparently restore elastin levels.  We who have this dread disease tend to be far too pessimistic.  We are closer to a cure than we can even imagine.  But, the fact that it can be so psychologically debilitating coupled with the fact that the experts tend to be so discouraging in their assessments doesn't make for a lot of optimism.  But we shouldn't allow that to drive us to despair.  There ARE treatments that work, at least in part, and a real solution is close at hand.

One of the major frustrations, of course, is the fact that it sometimes seems easier to correct 'plaques' that are palpable, than it is to correct deformities that seemingly occur for no apparent reason, as in, "I got rid of the plaques ... but".  Thus the real gold standard for many around here is dealing with the deformities, not in getting rid of or shrinking palpable plaques.  And, of course, another issue around here seems to be that the plaques themselves seem to be dynamic, growing and shrinking for no apparent reasons, making us feel like we are 'improving' when we may in fact be going the opposite direction and causing depression when in reality we are really not getting any worse.  So palpable plaques tend to be a canard of sorts.  The REAL issue is "Is the DEFORMITY getting worse or better".  And the fact is that most if not all of us have seen no meaningful and enduring improvement at the deformity level EXCEPT what can be traced to an ongoing continuing therapeutic effort .  That is the frustration you are seeing here.  But again, my suspicion is that a real solution is just around the corner.

At this point, I really suspect that the whole elastin issue is entangled with glucose metabolism.  I would conjecture that elastin likely requires more energy at the cellular level than other types of tissue (and even more energy when subjected to trauma) and is thus the first to go when glucose metabolism heads south.  I am not a doctor or a medical professional, so these are ONLY my conjectures, but this is the theory I am currently pursuing.  Fibrosis is only the tip of the proverbial iceburg.  There is something a whole lot bigger and more fundamental going wrong under the surface.  For me, a prime candidate is faulty glucose metabolism.  I think it no coincidence that Peyronies disease is becoming rampant at the same time that metabolic syndrome is so epidemic that it is even being diagnosed in pre-teens.  An additional clue is the fact that Peyronies outcomes for diabetics have been shown to be much worse than the outcomes experienced by non-diabetics.  So I think the bigger picture is to address possible insulin resistance factors.  Fibrosis (which is what causes elastin deficiency) encompasses a whole range of maladies, Peyronies is only one of those.  So right now, I am looking really hard at these external factors on a personal level, like getting refined sugars out of my diet as much as possible in favor of complex sugars like that found in fruit, like making sure I a getting a lot of important co-factors like grapefruit, cinnamon, inulin, etc.  Paying close attention to things like glycemic index rating.  I am also investigating other ways of addressing insulin resistance through the use of supplements.  This is the approach I am taking at this point.  It may all end up being just another rabbit trail.  Who knows?  I am not afraid to be wrong, but I am afraid of passing over opportunities.  I think it needs to be investigated and I am not the type to wait for someone else to do it.  I wish you the very best!  - George

[Hawk]

I really think that one thing that confuses a lot of people is the tossing around of terms like "plaque" and "scar tissue"....

Lumps occur when there is an almost tumor like process going on that results in an accumulation of collagen.  These lumps, in and of themselves, though abnormal and definitely not desirable, are not the cause of the deformities although they may or may not coexist with the deformities.  The deformities are actually caused by another process.  This is the process whereby collagen and fibrin displace elastin in the tissues.  Thus a person can have a significant sized "plaque" and exhibit little or no deformity as long as the localized tissue retains sufficient elastin.  On the other hand, there may be no lump at all, but if the tissue is depleted of elastin, there will be deformity.  In some cases, both conditions are concurrent.  When you treat such a condition with the objective of getting rid of collagen, the result will be that the lump will disappear, but since the remaining tissue is elastin deficient, it still refuses to stretch, which results in the deformity remaining.  This is one huge problem I see with the collagenase approach.  If whatever strategy proposed does not take into account the rejuvenation of elastin, it will be of no use in eliminating deformity.

- George

George,

I speak as a member whose personal nature is to always look for holes in bold absolute statements unless they are supported with facts on a point by point basis.  I have to wonder what a Peyronies Disease specialist or researcher might think when reading your explanation.   I suspect they may chuckle to themselves and that they may be able to shoot holes in many of the individual statements.  The problem is that you are intelligent and articulate enough to convince many people that your use of collagen vs elastin, or your dividing up the processes as two separate processes, are proper.  While this may be a working description to make a point, I doubt these are an accurate description of Peyronies Disease.  It is my opinion that if we strictly accepted some of these points we would find ourselves having to unexplain them down the road.  We of course have no way to research these ideas.  We can not even produce theories but are forced to speculate with fragmented evidence.  

Your posts are usually cautiously sprinkled with warnings of: "personal opinion" and other disclaimers but many people probably still suspect you may have more facts to support these theories that you do have.  It is clear that some take this information, ask not one question, and await further advice on how to act based on this information.  Speaking as one member, I certainly do not want to see such well thought out expression suppressed, but I do want to keep it from going unquestioned.  Your understanding certainly varies from mine.

Somewhat aside from this, you have the ability to work on an in-depth post about your understanding of Peyronies Disease complete with documenting the basis for your understanding.  If you ever decide to undertake such a project I am sure it would find a topic on the forum for full discussion.


Discussion continued at

[wasa]

I don't know if I asked this before, but I have been working out with weights again, and for some reason, when I work out intensively (especially with barbell curls, etc) and I seem to be "gasping" for air, it somehow seems to affect my penis, as it feels a bit "painful" (not even the proper, just a bit uncomfortable). I also noticed that all of a sudden since the last 2 weeks the upward bent in my erect penis has gone up a bit more, the degree has worsened a bit in other words. I think it must have something to do with the "depletion" of oxygen, and the problem with the bent of the penis has got to be related with improper blood/oxygen supply (due to narrowed veins,... ? ) . I just found it peculiar, especially since I noticed the exact same thing when I worked out for a few months last year.

Any thoughts on this?

[Hawk]

Wasa,

I only feel safe making a couple general remarks about your observation.

First, whatever oxygen you temporarily deplete from most any form of exercise, you actually have an increased capacity for oxygen utilization the other 23 hours of your day.  Also, even in world champions, biceps are so small in relationship to the body that curls could never likely cause a real oxygen drop in the body.  Possibly large muscle groups like back/hips/quads (such as squats) could, but again, over all, there is no reason to think it would not improve your circulation and oxygen carrying capacity.

I can also report that I do not recall any of our other ten thousand posts mentioning such an observation other than a previous post that I remember you making on this subject.  That does not mean you don't feel anything in your penis.  You could have pressure from a slight hernia pressing down, or just a hike in blood pressure, or numerous other known and unknown events taking place, but I doubt if it has anything to do with oxygen depletion and I also doubt if it is connected to the progression of your Peyronies Disease.

[Tim468]

Wasa,

I mostly agree with Hawk, but I might temper that a bit to say that I cannot figure out a mechanism by which your exercise makes your Peyronie's Disease worse. It is possible, though, that *something* is different. I would look at everything - not just the exercise itself. What do you wear? Do you eat differently? Are you motivated to exercise because of some specific factor? For instance, you could decide to exercise because you are feeling it is a good way to respond to stress, and the stress is the thing making your Peyronies Disease worse (just an example of what I mean - I am not suggesting this is true for you).

This is the problem with Peyronies. We are so often in the dark. I have learned over the years that mine gets worse at odd times, for reasons I cannot fathom. I am more aware of some things in my life that seem to make it worse (for me, coffee, and high levels of stress).

Tim

[Liam]

WASA, I think you worry about your penis (understandably) and have anxiety and/or depression.  These will make you misinterpret "symptoms".  Both are as real of a disease as Peyronies Disease or any other disease.  You may have something going own like Tim suggests.  But, what you describe is strange.  Ask your doctor about my suggestion of depression/anxiety and how it relates to your symtoms.  Maybe I'm wrong.  I think it is worth checking into, though.

Good luck to you,

Liam

[Mew]

Hello all,

I have been experiencing erectile dysfunction and penile shrinkage/curvature/twisting/tissue changes since I took Finasteride 20 months ago.

I am scheduled for a Doppler Ultrasound in September and wanted to ask about the injection... I would rather take Viagra to avoid any trauma to my penis (is this common?) ... so was wondering if people who have undergone a Doppler injection have experienced more fibrosis as a result of the injections they use to measure blood flow?

I really don't want to have a needle inserted in my dick if I can help it.


My history
-----------
I will try to be brief: I'm 28, I took Finasteride (Propecia/Proscar 5mg) 20 months ago at 1.25/mg a day for hairloss, for 11 months.

I experienced many sexual, physical and mental side effects while on the drug to the point where I had no choice but to quit. It was very difficult to get erections without a lot of physical stimulation, most of the time it would end up a wet noodle and I would quickly lose it after penetration.

Since quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have had blood tests over the past 20 months, when I first came off my Total Testosterone was low-normal (12.8, range: 8.4-28..

It has since climbed up to 17.3, but my LH and FSH remain borderline low. A lot of other guys with these problems from Finasteride have ended up with similar hormonal profiles (Secondary Hypogonadism) and it seems to be a common thread for us, as well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

I am getting tested for a doppler in September to check bloodflow and don't want to create anymore fibrosis issues for my penis by getting injected, hence my initial question at the top of this post... but if anyone has anymore insight into the FInasteride/low DHT/hormones/low Nitric Oxide connection, please let me know.

There are many of us over at http://www.propeciahelp.com that are suffering thanks to this dangerous drug.

I plan on starting L-Arginine shortly at the very least, I NEED my Nocturnal erections back... but I feel I am only treating the symptoms, not the root cause of all this as Finasteride decimated my Testosterone production... need to find a doctor that can help bring it back up without going on TRT. Anyway...

Many thanks for your help in advance, this site is truly a godsend.

Mew.

[wasa]

Actually, Mew's post came just at the right time. I too had taken Finasteride for 2.5-3 years. It's been 3,5 years now since I've been off the drug. I had no erectyle disfunction or anything during taking Finasteride , but I think due to depleting DHT levels it affects the elasticity of your penis. There was a scientific article on which it's effect (compared to normal and castrate rats) on penile tissue structure was observed, with suprising conclusion about the role of DHT on penile tissue. So I believe taking Finasteride just makes you more prone to getting Peyronie's, I had a very small bruise on the base of my penis, and since then it has gone all wrong.

Mew, I experience these symptoms in particular aswell:

- penis constantly retreating as if in a cold pool
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft


The retreating is actually the best way to describe what I experience when I work out with weights. That's the feeling I get after an intensive exercise. I don't really have depression or anxiety about my problem, I've come to terms with it in some way, although I do am thinking about suing Merck for all the different consequences I had with taking that drug. The fact that 3 doctors don't really find plaques on a flaccid penis is in my humble opinion by no means an indication that something isn't wrong, I think I'm not yet "that" far into the progression, although it has worsened slowly. For some reason the narrowing and shortening occur especially during the spring/summer months, I take Acetyl-L-Carnitine 1.5 gr per day, which seems to help in some slight way with increasing blood flow and making the erect penis somehow "fuller". ALC seems to slow down the narrowing (I  noticed it when flaccid on one side) . As I said the curve has worsened and working out does seem to worsen this, however what I find most agonizing is the hardening of practically the whole shaft now (it used to be only at the base last year) and especially the shortening & narrowing. I think I've already lost about 2cm in length, and perhaps more in girth.  
The doctor's cant feel plaques, but when erect I now do see small, transparent white horizontal lines over the base of the penis, going upwards. Again, I read a few large studies about Peyronie in which it stated that usually Peyronie's can be figured out by palpation, except when the problem originates at the base of the penis, then MRI is the preferred form of diagnosis. The doctor's here only did one ultrasound last year, in which they didn't find anything. They don't do any more tests (I had to plea for ultrasound), as in their opinion nothing can be done about Peyronie anyways, so what's the use of diagnosing it. (in my opinion a horrible justification of their apathy and ignorance). Mew, injection didn't worsen my condition in any way.

Btw, of the four doctors I visited, 2 were young assistants of that "top" specialist, and I think once they put the results in their database they just conclude from those observations whenever I make a new appointment. Again apathy and laziness.

But to conlcude, Mew, I have the exact same symptoms: the narrowing, shortening, the completely different "look" of my penis now compared to three years back, full of varicose veins and lately little "bumps" on the sides of the shaft, the curvature upwards...  It could be it's not Peyronie's, this is the one thing I could agree with the specialist, he said "what is Peyronie? it could be under many forms, some people have at an early age arthritis, you could have at an earlier age plaques that build up in the veins of your penis." He did say that Finasteride could have been responsible, but it was impossible to conclude now, maybe in 10 years it would be common understanding..




 

[wasa]

And Mew, about the Testosterone. During the years I took finasteride, I hadn't done any blood tests. However I did feel less alert/agressive at those times. I think the problem is more in the higher estrogen to testosterone ratio (which is why people at older age are more prone to seksual dysfunctions), but it surprises me that Estrogen (estradiol) seems to be always in the "normal" range when people who are taking Finasteride do blood tests.

I do feel a remarkable difference between then and now in my alertness, which is due to testosterone/DHT. It was already better last year, but since the first months of 2007 I really feel the hormones "pumping" through my veins at times, so to speak. I did a full blood test three months ago, and everything was normal except for my testosterone level, which was at the very upper range at 780 ng/dl (500 ng/dl is the average)  or 27.3 nmol/L . It's like my body is experiencing a "catch-up effect", as my beard is growing very fast, also a lot of new hair growth on my legs, abdomen, chest, etc..

It's a sad thing that doctors have no scrupules about prescribing an anti-androgen to someone in his late-teens for something as trivial as hair loss (which in my case wasn't even MPB!) , but do have problems with prescribing newer treatments for something as agonizing as peyronie's.

So your Testosterone levels might slowly regain their normal ranges, in my case it took almost 3 full years, since mid 2007 it seems to have stabilised for me at the upper ranges, and I'm glad atleast I got that back.

[Liam]

MEW,

See my post "Think before you stick" under the ED topic.  I would not hesitate for 1 injection.  Multiple injections are a different story.

as well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

Do you have any resources related to this?

WASA,

It could be it's not Peyronie's, this is the one thing I could agree with the specialist, he said "what is Peyronie? it could be under many forms, some people have at an early age arthritis, you could have at an earlier age plaques that build up in the veins of your penis." He did say that Finasteride could have been responsible, but it was impossible to conclude now, maybe in 10 years it would be common understanding..

I feel pretty safe saying arthritis and plaques in your veins have nothing to do with Peyronies Disease directly.  For >99.9% of men diagnosed with Peyronies Disease, there is no doubt in their mind they have it.  It is overwhemingly obvious even in mild cases.

[MUSICMAN]

Well I went for my appt. with the urologist that is to be one of the top doctors dealing with peyronies in my area. I have seen others but wanted to get the best advice. He said that as to  my severity of the disease use of pentox, vet or the like would be a waste of time, with little or no results. The only option is surgery. He said the plication surgery would not do enough only the one with the graft. I have no idea of what this would cost  but since I don't have a $5.00 deductable insurance policy I guess I'm out of options. Now to try and live the rest of my life as a less than.


Edited format to make post screen width
Hawk

[Angus]

  Musicman... hold on a minute here. He said "...according to severity of the disease..." that only surgery will work. Exactly how severe is it? Can you estimate your degree of curve? If you can scrounge a 20 dollar bill you can make your own VED without a barn full of tools. How to make them and how to use them is all here on the board. And there are many other things that you can do without living under a money tree. Now, some other guys are going to chime in here with thoughts, but IMHO this doc sounds like he the top doc at selling surgeries right off the bat. And you're not going to live your life as a less than. The Enzyte commercials on tv try to drum this bigger is better garbage into the public but don't buy it. Empowerment for a man doesn't come from below the belt. Now, lets get to work... if you will, tell us something about your condition, curve angle and so on.  

[Hawk]

Mew,

Welcome.  

The topic of injection for an examination was just discussed.  Go to the "General Comment" topic and start reading at post #625

I am a bit paranoid about the injection used to induce an erection. Can anyone explain to me why it is not a bad idea for someone with Peyronies to add yet another injury to their penis?   When I asked Dr Mulhall about this when i saw him last, he sort of chuckled and said that it was a very small needle and I didn't need to worry about it...

I asked his nurse if Viagra could be used instead (something I read about other Urologists doing) but was told that Mulhall only uses the injections.

at post #627 I reply and there is some later exchange on the topic.

[MUSICMAN]

Well Angus here is the reply. At 59 after 35 years of good marrage and a good love life, two years ago I developed the peyronies. First urologist said take your vit E and see me in 90 days. Pain went away over time and next visit he informed me that most meds don't work. Since surgery usually brings ED ( got that most of the time anyway ) he does not like to recommend it. Kept taking the vit E but thats all. Since the
ED kept things from working time passed.  Six months ago I saw a different urologist and his question to me was what surgery do you want the plication or the graft procedure.? Now with one urologist with no  surgery and the other promotes it I needed another opinion. Checking around I talked to this doctor. He
said that he has options other than surgery. He comes highly recommended as a professional in peyronies. Well I made a appt. and went to see him.

As I have 80 to 90 deg. bend to the left things don't work too well. I would also need something for the ED to maintain a erection, but then at 90 deg. what's the point?

Edited format to make post screen width
Hawk

[Tim468]

Mew - welcome to the site. The propecia help site is very well laid out and informative. It is clear that thinking is along the same lines. It also helps me to understand why my lower than average testosterone levels may be affecting the rapidity of advancement of Peyronie's Disease.

Tim

[Mew]

All,

First, thanks for the kind words and information. I hope for those of you affected by Finasteride, that you will find www.propeciahelp.com helpful. Perhaps we can have some cross-over from members of this board that would like to share their advice on natural/other treatments for Peyronie's with the members of propeciahelp.com, since many of us ex-Finasteride users are suffering similar problems "downstairs". Just a thought...

-----------

Regarding my initial question about the doppler needle test leading to further fibrosis issues: I left a message with the Urologist requesting I be able to take Viagra, we will see what he says. I will need to give this much thought if he says no and that I MUST have the injection.

I spoke with another member of propeciahelp.com who underwent a doppler injection of Trimix and in fact ended up having a Priapism which required 14 injections to bring down... I do not want this to happen to me. So if in the end I decide the risk isn't worth it, I will just cancel the appointment, but I won't have any answers as to my penile blood flow/possible fibrosis issues that way either...

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

So your Testosterone levels might slowly regain their normal ranges, in my case it took almost 3 full years, since mid 2007 it seems to have stabilised for me at the upper ranges, and I'm glad atleast I got that back.

WASA: thanks for your insights about your experiences with Finasteride and the doppler. You should consider yourself lucky that your Testosterone levels came back up!!! Many of us ex-Fin users after taking the drug found our T levels crashed and remained in the toilet, and have yet to recover to "normal" levels for our age.

Right now I have the hormonal profile of a 60 year old man, as do many others that have suffered early andropause as a result of Finasteride use. I hope things will climb further but am considering seeing a top endocrinologist in the US to try treatment to "jumpstart" my Hypothalamus Pituitary Axis into producing more T. For us Propecia sufferers, it seems lack of DHT while on the drug can lead to penile shrinkage/fibrosis/curvature etc... which is then further compounded when some of us end up wth low T after coming off.

----------

Quote
...as well as a connection to Peyronie's disease from lack of DHT thanks to the drug.

Do you have any resources related to this?

LIAM: There are a number of studies in the "Finasteride Studies" and "Other Studies" sections of propeciahelp.com that show that normal levels of Testosterone and DHT are required for proper genital tissue structure/sexual function.

For example:

Effect of androgen deprivation on penile ultrastructure (rat study)
http://www.asiaandro.com/1008-682X/5/33.htm
^^^^ Look at the photos for further proof of what can happen to penile tissues when you block DHT with FINASTERIDE. Obviously this is a RAT model but its not far fetched to believe such things occur in humans... as I have found out myself.


Effects of Medical or Surgical Castration on Erectile Function in an Animal Model (rabbit study)
http://www.andrologyjournal.org/cgi/reprint/24/3/381.pdf
^^ same thing here, rabbits experienced tissue changes/ED when androgens reduced... and big surprise... restoring T/DHT (androgens) corrects tissues/ED

Restorative Increases in Serum Testosterone Levels Are Significantly Correlated to Improvements in Sexual Functioning (human study)
http://www.andrologyjournal.org/cgi/reprint/25/6/963.pdf
^^^ yet again... restoring T/DHT (androgens) corrects ED issues

Recent insights into androgen action on the anatomical and physiological substrate of penile erection (human study)
http://www.asiaandro.com/1008-682X/8/3.htm
^^^ more proof that androgens are necessary for proper sexual function in men

The Effects of Transdermal Dihydrotestosterone in the Aging Male: A Prospective, Randomized, Double Blind Study (human study)
http://jcem.endojournals.org/cgi/reprint/87/4/1467.pdf
^^^ take away DHT, you lose sexual function/libido --- restore it, you recover function

Dihydrotestosterone is the active androgen in the maintenance of nitric oxide-mediated penile erection in the rat
http://endo.endojournals.org/cgi/reprint/136/4/1495.pdf
^^^ DHT is necessary for NOS production so you can get an erection

Effects of androgens on the expression of nitric oxide synthase mRNAs in rat corpus Cavernosum
http://www.blackwell-synergy.com/doi/full/10.1046/j.1464-410x.1999.00913.x
^^^ same thing here.

Dr Irwin Goldstein corroborates the fact that androgen replacement can reverse penile tissue fibrosis in humans, and that lack of androgens cause progressive fibrosis via collagen deposits
http://finasteride.jconserv.net/viewtopic.php?t=346

Androgens critical for Penile Erections in Humans
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00245.x

Androgen and estrogen receptors in the human penis
http://www.springerlink.com/content/f517xh1nj337hf6b/

The effects of testosterone on the cavernous tissue and erectile function
http://www.springerlink.com/content/j85w526u381206g1/

Penile apoptosis in association with p53 under lack of testosterone
http://www.springerlink.com/content/cqpq96aydaaj3e1t/

Restorative Increases in Serum Testosterone Levels Are Significantly Correlated to Improvements in Sexual Functioning
http://www.andrologyjournal.org/cgi/reprint/25/6/963.pdf
^^ note the bit about nocturnal erections

So, for those of you who have not gotten bloodtests done for Testosterone, Free/Bioavailable Testosterone, DHT, LH, FSH, Prolactin, Estradiol, Cortisol and others... I advise you to do so as your androgens (or lack thereof) may also be a contributing factor to the Peyronie's, especially if you have low T.

Anyway, hope we can share further information and treatments to help us through these dark days.

Thanks,

Mew.

Administrator,
www.propeciahelp.com

[George999]

Anyone ever consider the idea that if one followed the trail of low testosterone, it might lead right back to excessive serum glucose levels and insulin sensitivity problems?  And that THAT might be what is fueling Peyronies?  There is a lot of speculation about using Testosterone therapy to combat Metabolic Syndrome.  I wonder if anyone has ever considered combating Metabolic Syndrome in an effort to normalize Testosterone?

http://care.diabetesjournals.org/cgi/content/full/29/3/749?ijkey=e392e22c7f21b9d91f5bc8e057a24b35f12964d9&keytype2=tf_ipsecsha

http://www.medicalnewstoday.com/articles/24895.php

http://www.agingmale2004.com/transcript-Arver.htm

http://www.agingmale2006.com/abstracts/abs_epidemiology_testosterone_metabolic.asp

[Liam]

While interesting, I did not see any evidence low DHT levels caused Peyronies Disease.  The studies dealt with castrated mice who, depending on the study, had increased collagen fibers or fibrosis.  Androgen therapy reversed the fibrosis.  I mean there is some connection with the fibrosis.  I just can't find a direct connection between DHT levels and Peyronies Disease.  Has any researcher studied this possible connection directly?

Since quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have seen many of these symptoms listed before by members with unsure cases of Peyronies Disease.  One that comes to mind was "soggy testicles".  At first, I got a chuckle.  But, now I have seen several people post this in similar language (sounds the same to me).  I mean..you know...describe something as amorphic as your testicles in an unusual state.  Soggy/wrinkly works for me.  There may be a connection.  Maybe some of these guys can get their DHT levels checked.

Thanks for the interesting links!

The bald and beautiful,

Liam

[wasa]

I don't think Finasteride causes Peyronies Disease, it just increases the chances of getting Peyronies Disease due to trauma due to making the fibers in the penis less elastic (collagen). In my case it was very minor trauma, about half a year after quitting Finasteride.

Liam, about the link I made of arthritis, what I was trying to say was that the urologist meant that just as there are varying forms of arthritis (from mild to severe) between people, there could be varying forms of Peyronies Disease. Mine could be rather mild for now, I doubt I don't have Peyronies Disease, it has all the symptoms, but it's frustrating that my urologist just assumes that just because he can't feel calcification or see plaques, there is no Peyronies Disease. He thinks it's a build-up of small plaque desposits in the veins of the penis, which is common with older age, which result in curvature etc. However it doesn't really explain the narrowing/shortening/hardening.

Here's the article about the usefullness of MRI and Peyronies Disease at the penile base. http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12600434&dopt=AbstractPlus  . Conclusion: Penile palpation in combination with ultrasound represents the method of choice to diagnose plaque formation in Peyronie's disease. MRI provides better information on plaque formation at the penile basis. Calcification can only be proven by ultrasound, not by MRI.

Here's another useful article: http://www.springerlink.com/content/ukp6614284862302/

I think if I go for another consultation, I'll take these documents with me. However, I do think my next visit will be to someone such as Dr. Levine or Dr. Lue, as I'm tired of dealing with urologists who show not an ounce of interest in a patient's story or diagnosing/fixing the underlying problem. The first may match the attitude of Dr. House Liam, the second doesn't

While interesting, I did not see any evidence low DHT levels caused Peyronies Disease.  The studies dealt with castrated mice who, depending on the study, had increased collagen fibers or fibrosis.  Androgen therapy reversed the fibrosis.  I mean there is some connection with the fibrosis.  I just can't find a direct connection between DHT levels and Peyronies Disease.  Has any researcher studied this possible connection directly?

Since quitting a number of these side effects have not resolved. These include:

- penile/scrotum shrinkage, loss of length/girth
- loss of morning/spontaneous/nocturnal erections
- empty/wrinkly scrotum
- penis constantly retreating as if in a cold pool
- no libido
- loss of sensation/numbness to both penis shaft and scrotum, both feel lifeless/not pleasureable
- penile tissue changes: narrowing, curvature, darkening, emergence of numerous varicose veins along shaft
- ongoing erectile dysfunction

I have seen many of these symptoms listed before by members with unsure cases of Peyronies Disease.  One that comes to mind was "soggy testicles".  At first, I got a chuckle.  But, now I have seen several people post this in similar language (sounds the same to me).  I mean..you know...describe something as amorphic as your testicles in an unusual state.  Soggy/wrinkly works for me.  There may be a connection.  Maybe some of these guys can get their DHT levels checked.

Thanks for the interesting links!

The bald and beautiful,

Liam

[Tim468]

Some thoughts:

The study cited...
>>Effects of Medical or Surgical Castration on Erectile Function in an Animal Model (rabbit study)
http://www.andrologyjournal.org/cgi/reprint/24/3/381.pdf
^^ same thing here, rabbits experienced tissue changes/ED when androgens reduced... and big surprise... restoring T/DHT (androgens) corrects tissues/ED<<

I don't see evidence that they studied the effects of giving androgens and corrected it, but interestingly, giving PDE5 inhibitors did nothing to increase blood pressure to the penis (which is what they measured as an end point).

This suggests that the effect of androgen loss on ED is not easily fixed by drugs like Viagra. Is that the story that men with ED in association with Finasteride use report?

Giving testosterone or upstream androgens can fix ED if the problem is low T levels. What is intriguing is the connection of low T levels to fibrotic changes in the penis ultrastructure. Their hypothesis is that the changes in structure lead to alterations in the ability of the tunica to seal off venules during erection and that it does not respond to PDE5 inhibition for that reason.

thanks for the links

George - outstanding links. When taken into consideration with testosterone levels and the effects men given Finasteride report, I think there almost has to be a connection. The Swedish researcher seems to think that it is tha accumulation of abdominal fat that leads to the higher metabolic syndrome risk. That might be true, but the whole role of glucose metabolism in T function is intriguing.

Tim

[Liam]

He thinks it's a build-up of small plaque desposits in the veins of the penis, which is common with older age, which result in curvature etc. However it doesn't really explain the narrowing/shortening/hardening.

I'm sure you misunderstood your doctor.  Did he use the word thrombosis, phlebitis or something similar?

Here are case studies related to a condition of the veins in the penis.  It is not age related, but maybe this is what he could have been referring.  Notice in the first case the man had a "palpable nodule".  From my reading this is not always the case.  This may not be what he was talking about.  I would try to find out.  

http://www.actasurologicas.info/eng/jan2006/v30n1p80.htm  -  Thrombosis of the dorsal vein of the penis (Mondor's phlebitis). A case report

http://www.jaoa.org/cgi/reprint/101/4/235  -  Penile Mondor's disease in a 22-year-old man
EXCERPT:  Sclerosing lymphangitis and Peyronie's disease both need to considered in the differential diagnosis of a painful, fibrotic lesion of the penis, however. Sclerosing lymphangitis is characterized by thickened and dilated lymphatic vessels whose morphology is serpiginous. Peyronie's disease results from a thickening of the tunica albuginea and presents as a welldefined fibrotic plaque on the penis. If doubt persists even after taking the history and performing the physical examination, consider ultrasonography.

Another (better) thought is plaque build up in arteries?  Mostly seen in older patients?  Maybe?  The doctor could have even said blood vessels.  Did he say anything about cholesterol?

Wasa, I truly hope you get better.  

[ninjagaiden]

Dear all,

About the propecia stuff against hair loss, I used that thing for a couple of years between 18 and 20 years old. My bro for 3-4 years I think (but he has no pb with his dick I think). I stopped it when I read it was modifying some hormone levels...

I thought it was not natural. And having inherited  Thyrroid (sorry for translation) problems from my mom, I didn't want to use hormone-level modifying agents to make things worse...

I told my bro to stop too, and he did. Now that I discovered what Propecia is really about, I'm glad I made my bro quit this crap. I can't believe docs prescribe this crap like candy. And thus without informing their patients.  

There should be a note on this product, but I guess nobody would buy it afterwards  

So let your hair down!  

2 questions now:
1) What about Alostil (french brand, I think it's Minoxidil for the US-English natives). What it this product really? Can it cause problems like propecia? If yes, I say goodbye to this stuff (been off and on using it for years) . But I guess it's less harmful.

2) Is Peyronies-disease-help.com a complete joke or what? I read their stuff, half of it seems serious, the other half is commercial bulls..t to me (a book about being a great lover with peyronies, seems like a con game...hey, guys don't think I was looking for a book like that ,was just giving an example!)  What site would you recommend in order to buy "herbal treatment" for Peyronies (if it doesn't harm, why not give a try?)  

3) What is your recommended most fashionable cap that I can wear in order to hide the baldness?  

PS: There's a very high probability that Question 3 is a joke...

[Liam]

Forget Propecia and Minoxidil, Diet Coke (as well as the other "also ran" diet soft drinks) is killing us.  Do a Google search of "aspartame".  Here is a list of symptoms from one site.  I fail to see "sexual symptoms" also listed on other sites.

Eye
blindness in one or both eyes
decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision, decreased night vision
pain in one or both eyes
decreased tears
trouble with contact lenses
bulging eyes

Ear
tinnitus - ringing or buzzing sound
severe intolerance of noise
marked hearing impairment

Neurologic
epileptic seizures
headaches, migraines and (some severe)
dizziness, unsteadiness, both
confusion, memory loss, both
severe drowsiness and sleepiness
paresthesia or numbness of the limbs
severe slurring of speech
severe hyperactivity and restless legs
atypical facial pain
severe tremors

Psychological/Psychiatric
severe depression
irritability
aggression
anxiety
personality changes
insomnia
phobias

Chest
palpitations, tachycardia
shortness of breath
recent high blood pressure

Gastrointestinal
nausea
diarrhea, sometimes with blood in stools
abdominal pain
pain when swallowing

Skin and Allergies
itching without a rash
lip and mouth reactions
hives
aggravated respiratory allergies such as asthma

Endocrine and Metabolic
loss of control of diabetes
menstrual changes
marked thinning or loss of hair
marked weight loss
gradual weight gain
aggravated low blood sugar (hypoglycemia)
severe PMS

Other
frequency of voiding and burning during urination
excessive thirst, fluid retention, leg swelling, and bloating
increased susceptibility to infection

Additional Symptoms of Aspartame Toxicity include the most critical symptoms of all
death
irreversible brain damage
birth defects, including mental retardation
peptic ulcers
aspartame addiction and increased craving for sweets
hyperactivity in children
severe depression
aggressive behavior
suicidal tendencies

Aspartame may trigger, mimic, or cause the following illnesses:
Chronic Fatigue Syndrome
Epstein-Barr
Post-Polio Syndrome
Lyme Disease
Grave's Disease
Meniere's Disease
Alzheimer's Disease
ALS
Epilepsy
Multiple Sclerosis (MS)
EMS
Hypothyroidism
Mercury sensitivity from Amalgam fillings
Fibromyalgia
Lupus
non-Hodgkins
Lymphoma
Attention Deficit Disorder (ADD)

If transportation faced the same scrutiny as things we ingest, we might be walking.

[Hawk]

Liam,

And your point is _______________________________________  

Possible points:

1. You are dead serious and we have found the cause of almost all the world's health problems

2. Since there is crap on the internet, and propecia is on the internet,  propecia related complaints must also be crap.


I am hoping for a 3rd point since neither of the two I listed are sound logical reasoning.

PS: Sorry, but I need to have points clearly and directly presented.  I am not very good with nuance or points that are implied but not stated.

[George999]

Liam's point is that if we lose our sense of humor, its all over.

[ninjagaiden]

I understand Liam's pseudo-cynism, but I was wondering about Propecia particularly.
Was also talking about Minoxidil, which to me doesn't look as harmful, but I wan't to know if there's a danger according to you guys...

Liam, I remind you about your theory about hydrogen being dangerous in some situations (I can't remember the post in which you said that), and I follow your advice and will quit drinking water from now on. Or at least decrease my water consumption by drinking Vodka and whisky (since there is only 60% water in these products)...

But I was serious about propecia, you think it was a dangerous product regarding the reason why of this forum? (i.e. peyronies!)

  And for some reason, I don't care about the menstrual changes  as an aspartame side effect...

[Chrisshef]

Hi all firstly I'm a 22yr old male.  i believe i have some of the symptoms of this disease.

i have a slight curve in my penis.  i mean literally very slight but more worrying i have a substance under my foreskin which looks like a calcium deposit (i had a online medical examine a photograph).
the substance is on the top and my penis curves very slightly to the left.  a matter of mm's.

now the 2 go hand in hand to the description of this disease..... i will be going to see a doctor at some point should you guys recommend it.

i have no pain my erections are hard and basically apart from the white hard calcium LOOKING deposits i have nothing wrong with my penis.

my question is..... i thought the calcium deposits was a secondary stage of the disease and the cause of the bending from a buildup.  so if this is true how can i have such a slight curve and still get the deposits?

any replies would be great.

thanks in advance

[Tim468]

Dear Chrisshef

Neither I nor anyone else can diagnos you over the internet. You are smart to go to a doctor.

However, if there is something white-ish and hard that looks calcific on the skin of your penis, then that is almost certainly NOT Peyronie's Disease (Peyronies Disease). Peyronies Disease is a disease of the tunica which is located just underneath the skin on the penis shaft, not on the visible surface. I don't know what it is, but it is not plaque form the sounds of it. Get it checked out though. It is not likely to be serious, more likely a sebaceous gland or something that is full of hardened material.

Tim

[George999]

I think the direct concern about Procepia is the fact that it STIMULATES Testosterone.  By inhibiting a substance in the body that naturally breaks down Testosterone, it allows the level of Testosterone to build up in the bloodstream.  The problem this can cause is that the body reacts by trying to regulate the excessive Testosterone levels.  The end result can be that once you have discontinued the Propecia, you have shocked the body into lowering its natural Testosterone production and you end up with low serum Testosterone levels and all of the problems that accompany that situation.  Anytime one does anything that works by manipulating hormones, one has to be very careful.  Once the body detects that the basal level of a particular hormone is out of range, it will try to adjust its level, and in doing so, it may end up out of range in the other direction when the course of treatment is terminated.  - George

[Liam]

And look at all the sites when you seach aspartame.  Why is one more credible than the other?  Only researchers for Propecia would lie?  Researchers for the sugar substitute industry wouldn't.  

Don't be too serious, guys.

But keep a skeptical eye on both big business and the whistle blowers.  I heard someone say the truth may be gray.  

[Liam]

Chris -

Go to your doc!!!  May be nothing.  May be serious.  Go NOW!!!

Liam

[George999]

Since Liam has injected the subject of artificial sweeteners, let me tell you, there dangers go far beyond toxicity.  The story goes like this.

1)  Sugars make people fat.  The reason that sugars make people fat is because the contain empty calories, right?  Well that is what we have all been taught.  But actually it is only a little part of the story.  Sugars actually fatten us up for multiple reasons:

    A.  They most certainly DO contain EMPTY (containing no nutritional value) calories, and LOTS of them.
    B.  Sugars are absorbed very quickly in the Jejunum (the central part of the three part small intestine).  The literally get dumped right into the bloodstream.  This results in what is known as an insulin spike as the body tries to deal with this sudden rush of sugar.  Insulin is both inflammatory and fattening.  If you don't believe insulin is fattening, just ask a diabetic who has to take insulin.  In fact a problem that doctors have with diabetics, especially younger ones, is that they try to skip on their insulin in an effort to lose weight.
    C.  Sugars release a signal from the stomach (neuropeptide Y) to the hypothalmus that causes the hypothalmus to crank DOWN the metabolism and make you hungry, sending you in search of even more calories.  This is a powerful sequence that does not get enough attention.  If the resultant hunger causes the person to eat even more sweets, an endless loop occurs and obesity just happens.
    D.  Sugars nourish specific bacteria in the intestinal tract which cause the digestive process to be more efficient thus promoting even more weight gain.

2)  The problem with artificial sweeteners (ALL OF THEM) is:
    A.  Artificial sweeteners, although calorie free and insulin neutral, DO trigger NPY which knocks out your metabolism and makes you hungry.  So after you consume that diet soda, you are primed to over eat and snack, snack, snack.  This, combined with the depressed metabolic rate, very efficiently causes weight gain.
    B.  And that is not all.  Even though artificial sweeteners do not contain calories and in some cases are not even absorbed by the body (ie Splenda), they can and do nourish a bacterial culture in the intestine that promotes weight gain along with other undesirable effects.

So, indeed, don't believe everything you hear about artificial sweeteners.  A lot of it is coming from the people that are trying to sell it to you and they won't tell you these things.  The best way to get your carbs is by following the glycemic index and choosing those products that are on the low end, mainly healthy fruits.  There are no shortcuts to good health.  You won't find good health at the fast food joint, no matter how many diet Cokes you drink.  You will only find it in the produce aisle of your local grocery store and by getting enough healthy exercise to maintain your metabolic rate and burn off those calories that are essential as a part of a balanced diet.  Eating healthy foods (especially certain fibers and fats) causes the gastro-intestinal tract to release Cocaine-Amphetamine-Regulator Transcript or "CART", which causes the hypothalmus to shut off hunger and crank UP the metabolism.

- George

[Liam]

I know side effects have been discovered after a product has been released.  The problem I see is when a laundry list of "side effects" is published covering a wide range of symptoms without evidence.  These are reported by anonymous people with no accountability.  Medical sites are magnets for people with hypochondriasis.  At least one article has coined the term "cyberchondriac".  http://www.saturday.com/tech/2002/06/24/.HTML

If we believe these unreported symptoms exist, we must also accept the existence a government conspiracy with the drug companies.  The conspiracy, by necessity, would not just be to cover up the initial report of the symptoms, but also any subsequent reports of the symptoms.  Possible?  Maybe.  Likely?  No.

This is not to say there are no side effects for men who take propecia.  My concern is that, without limits, a group dynamic will start.  To use an "old school" term, mass hysteria happens.  Soon everything bad that happens to you (real or imagined) is the result of the drug.  These symptoms get posted.  They appear to have equal credibility as the other (sometimes real) side effects.  The next person identifies with a symptom and the downward spiral has started.

Another issue is research is taken out of context.  It is then cited in impressive lists that would boggle the mind.  Most people don't read or understand enough to know the limited usefulness of the references.

The real danger is someone may actually have a symptom and falsely attribute it to the drug and not seek medical help (because the doctors are in on the conspiracy).

I feel "whistleblower" sites can be a good thing.  A great deal of caution and skepticism must be used because of their inherent nature not because of the administrator or the members.  Enjoy these sites.  Let them stir questions.  But, always check everything with your doctor.

Now I am sure someone will say that this forum does the same thing.  There are some parallels.  True enough.  The difference is Peyronies Disease is a recognized condition with well known symptoms.  Members are always encouraged to seek the best medical help.  When a new member comes in with atypical symptoms, there is always someone to guide the person to seek the appropriate medical help.  Do we push the boundaries sometimes?  Yes.  That is one reason Hawk has always stressed the importance that we not diagnose on the forum.

Healthy skepticism is always a good thing when advice is anonymous

[George999]

Another problem with the whole side effect issue is that the very problem underlying the reasons why the drug was prescribed in the first place and actually be causing the "side effect" and not the drug itself.  Thus it sometimes becomes difficult, even for the professionals, to differentiate the real side effects from the "noise".  In the case of Propecia and Peyronies, ED, etc., I think our time is probably better spent searching for a solution rather than focusing on Propecia itself.  One must always remember, the internet is a huge gathering place as Liam suggests, and there is always a possibility that all of these Peyronies sufferers may have contracted Peyronies even if they had never taken Propecia.  Just a thought.  - George

[flexor]

Although this discussion has concentrated on Propecia, don't forget that finisteride is widely prescribed under the name Proscar for enlarged prostate.

[Hawk]

During my totally non-symptomatic prostate issues preceding a diagnoses of prostate cancer, the uro prescribed finisteride for no other reason than a high PSA with 2 negative biopsies.  There was no clearly explained point that I can recall.  I took one pill, read the insert of possible side effects and flushed the rest.  

The acknowledged side effects of this drug are not difficult to recall.  They are enough to get a man's attention, especially if you have no clear need for the drug

[Chrisshef]

sorry i meant the substance is on my actual penis.....not the foreskin.  just near the head.

its visible from the surface of my actual penis though its not under the penis skin..... if you get me.

i will be going to the doctors though but wanted some idea of what i had before i can see him.

i cant understand why it doesn't hurt/doesn't bend(any more than a normal penis) but i have this substance......i know the disease can be very random but i thought it was pretty painful from the stories i read...... so i guess what i don't understand is how can i have this "substance" which lets say it is a plaque but i have none of the other symptoms? i also thought the plaques were quite far into the "stages" of the disease

[Liam]

Conditions of the Penis
When spots, lumps or rashes appear on the penis one of the first concerns many men have is whether they have a sexually transmitted disease. In most cases most spots are both common and harmless. It is the size, shape and color of the spot that helps to determine whether there is something to be concerned about.

Tiny nodules beneath the skin which appear over the scrotum and the base of the shaft of the penis are normal hair follicles.

Small pearly spots around the crown of the glans affect about 10% of all men around the ages of 20-40. These 'pearly penile papules' if diagnosed, are not infectious and require no treatment.

Small red or purple spots on the penis can appear on the glans, shaft or scrotum and usually affect younger men. Known as Fordyce spots they may appear in one's or two's but they frequently occur in patches of up to 100.

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These spots come about as a result of dilated blood vessels. They can look a little unsightly but they are completely harmless. No easy way is known of removing this type of spot.
A small-medium sized raised spot on the scrotum, sometimes filled with pus, is most likely just a spot or a boil.

Thick red patches with a well defined edge could spell psoriasis. Psoriasis can be inherited but is rarely serious. Typically, psoriasis of the penis will be treated by a steroid cream.

Pink-brown or skin-colored lumps with a moist surface could suggest genital warts.

A single, round and painless ulcer of the penis or scrotum could be primary syphilis.

A painless irregular genital ulcer could be penile cancer.

A single, painless but foul-smelling ulcer could be the result of a tropical disease and may be a sexually transmitted disease if sexual contact has occurred in the tropics.

Small blisters forming painful ulcers sounds like herpes simplex. This is the commonest form of genital ulceration. This is highly infectious and usually transmitted sexually. The first episode is often associated with a feverish illness.

Small gray ulcers with a red halo could be apthous ulcers. These occur in crops and can get better by themselves. However, because they are easily confused with herpes simplex a lab test is needed to determine a proper diagnosis.

Small raised papules often with a central depression could be molloscum contagiosum. This is a harmless and common viral disease in children most commonly spread through sexual contact in adults.

Irritating and burning red rash could be a condition know as balanitis.

The list above is not exhaustive. Self diagnosis of spots, lumps or rashes is not a good idea and sometimes a proper diagnosis can only be made with clinical tests. As with all genital signs and symptoms seek medical advice and practice safe sex.

Updated: January 2, 2007

Source: http://menshealth.about.com/od/diseasesconditions/a/penis_spots.htm

Statistics, Causes and Symptoms Penis Cancer
The American Cancer Society estimates that about 1,530 new cases of penile cancer are diagnosed each year and about 280 men will die of penile cancer in 2006. Penile cancer occurs in about 1 man in 100,000 in the United States.

Although penis cancer is very rare in North America and Europe but much more common in some parts of Africa and South America, where it accounts for up to 10% of cancers in men.

Definition of penis cancer
Cancer of the penis (penile cancer) is a malignant growth of cells in the tissue and/or external area of the penis. Penis cancer is a very rare disease that is generally an aggressive form of cancer that has a tendency to spread.

Prognosis following diagnosis of penis cancer
If penile cancer has been diagnosed and treated early then the 5 year survival rate is 65%, so it is important to seek medical attention quickly.



Cancer Symptoms?
Information and Treatment Options at our Cancer Resource Center
www.Cancer-Treatment-Guide.net


Elderly men are the most likely to suffer from this form of cancer.
Causes of penis cancer
The cause of penis cancer unknown but there is a higher incidence of penile cancer in uncircumcised men and men who do not keep the area under the foreskin clean. The presence of smegma, the cheese-like secretion under the foreskin, appears to increase the risk.

Signs symptoms of penis cancer
The most common symptom is a tender spot, wart like lump or open sore, usually painless, that originates on the tip of the penis. Pain and bleeding usually only occurs if the cancer is advanced. Penile cancer that is not treated can spread into the lymph nodes of the groin and on to other parts of the body. Malignant cells, cancer in the lymph nodes are abnormal, often painless, swellings.

Diagnosis of penis cancer
Diagnosis of penis cancer is made by the surgical removal and biopsy of the lump. This excludes other diseases such as penile warts or syphilis.

Stages of penis cancer
There are 4 stages of cancer of the penis


Stage 1 penis cancer. Malignant cells are found only on the surface of the penis

Stage 2 penis cancer. Malignant cells are found on the surface, tissues beneath the surface and in the shaft of the penis.

Stage 3 penis cancer. Malignant cells have spread to the lymph nodes in the groin.

Stage 4 penis cancer. Malignant cells have spread through the penis, lymph nodes in the groin and to other parts of the body.
Article updated 02/15/2006

12Next
Updated: February 15, 2006

Source: http://menshealth.about.com/cs/menonly/a/cancer_penis.htm

[Liam]

Psoriasis: most commonly affects other parts of the body, particularly the knees, elbows and scalp, but occasionally first appears on the penis, usually on the glans or inner surface of the foreskin. Psoriasis appears as thickened red papules or plaques with a well-defined edge. In uncircumcised men, and at other sites, it has a scaly surface. It rarely causes irritation. It is caused by an abnormality of skin production and can be inherited. It is unsightly, but rarely serious. There are a number of effective treatments available, such as steroid creams and calcipotriol cream (Dovonex).

Plaques

Penile plaques do not usually have a serious cause, but some are infectious and others may develop into more serious conditions: Erythroplasia of Queyrat, lichen sclerosis and balanitis xerotica obliterans may lead to the development of penile cancer.Make sure you seek prompt medical advice about penile plaques.


Balanitis and posthitis: balanitis is an inflammatory condition of the glans penis. Posthitis is an inflammatory condition of the foreskin. Symptoms include local irritation, burning and a red rash. Sometimes the skin appears to be peeling off as if scalded. Bacteria and yeasts such as candida can cause it. It is more common in older men and those with diabetes. Balanitis is infectious and may be sexually transmitted. It can be treated with appropriate antimicrobial creams.


Erythroplasia of Queyrat: appears as a sharply demarcated bright red plaque with a velvety surface. It is usually painless, and not itchy. It is an early manifestation of penile cancer and needs prompt diagnosis and treatment. Excision of the affected area is usually curative. It is not infectious.


Zoon's plasma cell balanitis: Zoon's balanitis appears as a bright red, shiny-surfaced plaque on the glans or inner surface of the foreskin. It is usually painless but may be accompanied by itching. The cause is unknown. It may respond to application of steroid cream, but frequently recurs. Circumcision is curative, but not essential. It is a harmless condition but can be confused with the much more serious condition of Erythroplasia of Queyrat. It is not infectious.


Lichen sclerosis and balanitis xerotica obliterans: lichen sclerosis appears as white plaques on the glans, foreskin or shaft of the penis. It usually has no symptoms, although burning and irritation have been reported. Balanitis xerotica obliterans is a severe form of lichen sclerosis affecting the foreskin of uncircumcised men. The opening or edge of the foreskin is firm and has a white scarred appearance. It is quite inelastic and will not pucker open as it is retracted. This may interfere with passing urine or sex. Both conditions may, rarely, lead to penile cancer and circumcision may be necessary. They are not infectious.


Psoriasis: see above, under papules.


Eczema: most commonly affects other parts of the body, but occasionally it may first appear on the penis. In such cases, it may be a skin reaction to an irritant that is better be described as dermatitis. Eczema appears as diffuse red plaques with a poorly defined edge and finely scaled surface. It frequently causes quite severe irritation. It can be caused by infection or local reaction to skin injury from chemicals or radiation. There are a number of effective treatments available, such as steroid creams. It is not infectious.







Last updated 04.10.2005

Source: http://www.netdoctor.co.uk/menshealth/facts/spotsonthepenis.htm


Get my point?

[Hawk]

Chris,

Bottom line is that Peyronies Disease plaque is UNDER the skin.  it is not in any way attached to the skin or surface tissue. if you move the skin back and forth it glides over the bump.  The bump does not move with the skin.  Since it is beneath and unattached to the skin, plaque has no color visible on the skin.

let us know what the doctor says and good luck.

[asmith]

 I have an important question to ask before I have a "Penile Duplex Study," aka, ultrasound of my penis on this Friday.  Per his written instructions, my urologist requested gray-scale imaging to rule out anatomic lesions and also color flow imaging and spectral waveforms.  He also instructed prostoglandin stimulation.  My first questions is:  Does anybody know what is prostoglandin stimulation/ what would be its purpose?  my second question is:  If its used to erect a penis (for better ultrasound study or study in general), what could this stimulation do to my penis? cause further scarring?  swelling? etc.?  do you recommend against it? should i just have an ultrasound without prostoglandin stimulation?

Thank-you.  

will post update with my results after the ultrasound. my brief history:  sudden curvature and intense pain of my penis starting back in February after a sexual injury.  have seen 6 urologists, including well-known Dr. Levine.  still have pain, curvature.