GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[DannyOcean]

I think I've posted on this before but I've noticed a lot of twitching in my muscles over the last year.  Although it started before my Peyronies Disease I've wondering if there might be a connection.  Anyway, after doing some research I think I have what is known as benign fasiculation syndrome.  BFS is kind of like Peyronies Disease in that it isn't clear what causes it or what cures it.  I am wondering if there might be a connection and thought I'd post here to see if anyone is experiencing this and if there might by any connection between BFS and Peyronies Disease?  Perhaps something circulation-related?

[DannyOcean]

Interesting...

So I posted over on a set of forums for BFS and one individual suggested something called "peripheral vasculitis" which is a form of nerve irritation that prevents a steady supply of blood and nutrients to nerves within the body.  He thought this might lead to onset of BFS (I need to do more research there).

Anyway, I looked up "peripheral vasculitis" and ended up coming across a reference to connective tissue disease.  Here is the description:

A connective tissue diseease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body's tissues. Elastin has the capability of stretching and returning to its original length - like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation. Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).

Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases which can be (but are not necessarily) associated with blood vessel abnormalities.

Is it me or does this sound a lot like Peyronies?  Maybe this connection (no pun intended) has been made before but if not it might be worth exploring.  Maybe it's just a coincidence but the onset of BFS just a few months before I developed Peyronies Disease seems a little strange to me.

I'd love to hear any thoughts you might have.  And of course feel free to tell me I'm loony.

[Tamarack]

This is a great group! I see a distillation process going on here, with many people bringing their experiences together to be compared and contrasted. At the same time, the knowledge and approaches of professionals in the field, through their patients, is being made available to the rest of us.

And then there is the biggest reason I see this as a great group: Hawk,Tim, and Angus, thanks for welcoming me, taking me under your wing, and giving me some rooted perspective. I needed that -- I felt like I was on a treadmill, pumping my legs but not getting anywhere. Hawk, I appreciate the dose of reality regarding my naïve "no pain--no inflammation" belief and my way-to-high remission percentage. Tim, I gobbled up your supplement suggestions, and my wife couldn't have been more pleased with the daily erection prescription order I gave her from "Dr. Tim." And Angus, yoor confirmation on what seemed obvious to me regarding Thackers Formula, along with your endorsement of Tim's suggestions, has me feeling more relaxed, and more clear on a direction to proceed.

If anyone else has advice for someone new to all of this, I would be glad to hear it.

I hope you folks don't mind that I don't get to respond every day, as my profession often has me out in the wilderness. Rest assured that I value the new relationships I am making here, and that you will hear back from me within a few days.

Tamarack

[scott]

DannyOcean,

I, for one, don't think you are loony.  Your post sounds like an echo of a few of my posts in the short time I have been here.  In fact, I suggest you go to the bottom of my profile and use the tool there to read my posts.

I do think that my pulmonary fibrosis, neuropathy, and Peyronie's are related, and it is frustrating that none of them has any real solution.  What is extremely interesting is, that if you go to websites dealing with pulmonary fibrosis, the disease processes sound almost exactly like Peyronie's, and there have been clinical trials with Pentox and Viagra for pulmonary fibrosis.  Not to mention current clinical trials on pirfenidone.  My hunch is that if you could cure one, you could cure all three.

Getting back to your fasiculations, the only sure way to find out is to go to a neurologist (if you can find a good one) and let him test you.  Or, if the fasiculations aren't causing problems, you might just want to let a sleeping dog lie.  If someone suggests an antidepressant to solve the problem, run like hell!

[Tim468]

Scott, have you been given either pentox or perfenidone? There is an on-going study of the latter here in Pittsburgh if you are interested in enrolling (I do not know if you are qualified to enter such a study, but there is one going on here).

Tim

[Rico]

If you go to Wikipedia Encyclopedia on-line under peyronies, they do talk about the new treatments under study for peyronies... Pentox/Viagra/arginine  and also alc and several other amino's....I think this is another arrow to add to ones quiver when going to his doctor(urologist)....

Rico

[howcanthisbe]

oh man, I think something bads about to happen to me. I just noticed a small scar tissue bump on my shaft. its about the size of a grain of 6 salts, like half a bb size but with no depth. Its flat and just scar tissue looking. I think it was tiny a week ago and now its grown. Could it be this is a bump from Peyronies Disease? I have had several small scar tissue bumps come and go, but these were the size of one grain of salt.... this one is a little bigger which scares me. I never thought anything about the others. A month ago I got into it with a girl and remember it hurting at one point, the next morning I woke up I had alot of pain as soon as I moved my penis. That was it though, I could move it after that and do anything with it just fine and it wouldnt hurt. But the first second I woke up I had extreme pain, it only lasted a sec though literally. I thought I was fine, now a month later a small scar tissue area appears, its not even really a bump. You guys think this could be a reoccurence or something of Peyronies Disease? Man O man this Peyronies Disease sucks.

[Tim468]

If you go to Wikipedia Encyclopedia on-line under peyronies, they do talk about the new treatments under study for peyronies... Pentox/Viagra/arginine  and also alc and several other amino's....I think this is another arrow to add to ones quiver when going to his doctor(urologist)....

Rico

Um, I wrote that.

Tim

[Liam]

HCTB,

It sounds like a skin tag.

No part of what you descibed sounds like Peyronies Disease to me.  I think you worry too much.  

No symptoms of Peyronies Disease mention bumps ON the penis.  Peyronies Disease does not come and go.  As long as you have been here, you should know that, too.

Based on everything you have written since coming to the forum and what I know about the disease, I would bet you don't have it.  Have you ever been diagnosed?

[Tim468]

A tiny bump on the surface skin of the shaft of the penis is not Peyronie's Disease. A quick way to tell is to see if the lesion" moves with the skin, or if it is "stuck" to the shaft. If it slides up and down with the skin then it is most likely a healing pimple, or ingrown hair follicle shaft. It might be impetigo (minor skin infection).

It is abundantly clear, "howcanthisbe", that you are living in a near state of panic, and that you still ahve not gotten adequate diagnosis or help from a medical professional. Unless you like the pain of living in uncertainty, change that.

Tim

[howcanthisbe]

Tim the scar tissue moves with the skin. All my scar tissue moves with the skin, even the other bump I have. Its not connected to the shaft, but the way I understand it is its Peyronies Disease  even if the scar tissue is on the outside. I mean theres no bump under the scar tissue, and it does move freely. I thought scar tissue on the outside of skin was bad too because scar tissue doesnt expland like normal tissue. So this could still be Peyronies Disease related couldnt it? Im not panicing, I just didnt go from 200% normal sexually to like 75% after I took the meds. I have Peyronies Disease, I have a dent and erection problems. Every where I have read says this is one thing, and thats Peyronies Disease. The dent is growing. But anyways now im confused, I thought any scar tissue on the outside even if its just on the skin and free was Peyronies Disease?

[Rico]

Tim,

When you said, Um I wrote that, did you?

Rico

[howcanthisbe]

Liam no I have never been diagnosed. I know this isnt a skin tag,lol. I may seem paranoid but im really not, I know what my condition is. This is scar tissue im talking about, it has a shine to it even. Like I said its not connected to the "core" of the shaft. Its just on top of the skin, I can pull it up and it goes loose from the shaft. But none the less im pretty sure its growing and  scar tissue doesnt  expand the same way  as normal tissue.

[Tim468]

Rico, yes I did write that.

HCTB, you really need to see a doctor about this. It does not sound like Peyronies Disease which is a DISEASE OF THE TUNICA ALBUGINEA and not the skin.

If you want, you can go ahead and actually read some of the background data on this condition, but it sounds like you are really making pretty wild and uninformed stabs in the dark. I might be wrong about that, but that is how it looks.

[howcanthisbe]

I understand what your saying Tim. You gotta remember before I took the meds I was way pass normal sexually. Then Bam.... somethings up..... I start thinking whats going on. So I look up the med side effects. Ok it causes erection problems..... I stop taking the meds and 3 years later I still have the side effects. Im wondering whats going on, then it hits me.... I have Peyronies Disease. Thats the only reason the side effect didnt go away, because I developed Peyronies Disease. I got a dent, erection problems. I mean honestly I dont even consider that I dont have Peyronies Disease, in my mind I know I have it. I havent even thought of the possiblity that I dont. Thats just me though, all im saying is scar tissue on the skin is bad also right? I  have read on a website any scar tissue on the penis can cause you problems.

[Hawk]

Peyronies Disease is scar tissue on the tunica.  It has NOTHING to do with a skin mark or scar on the skin anywhere on your body, INCLUDING YOUR PENIS.  Peyronies Disease does not accompany scars on the skin and scars on the skin do not accompany Peyronies Disease.  This message has been related to you by many members, in many ways.  Any one of them by themselves, have been crystal clear enough to settle the issue.  All of them together are becoming distracting.

Please do not tell us again what you think your skin marks are or what significance you think they may have.  It does not matter if it is brown, or shiny, or on your penis or on your chin. We know what they are not and we have communicated that as clearly as any of us knows how without being offensive.

See a urologist and a counselor and listen carefully to them.  Until you do, please drop the issue or kindly post on the off topic board.

If you refuse help from professionals, then read the 6000 posts on this forum and you will see that there is not one word about scars on the skin of a man's penis.

[howcanthisbe]

sorry Hawk. I missed that somehow. I have read on alot of sites that any scar tissue on the penis is bad because it doesnt stretch like normal tissue. I must have read it wrong or was misinformed. Anyways I wont post anything about it again.

[Tim468]

HCTB:

You are getting "hammered" a little bit because you are seeming to fall prey to negative thinking without taking the required steps to make things better.

This is not uncommon - we are all prone to it a bit - some more than others. We are paralyzed by fear, or certain that the news will be even worse, or whatever. We are "too busy" (that is usually my excuse) - but in all ways, what I am describing is POOR SELF CARE.

When we take care of ourselves, we thrive as human beings. It starts with the basics like making your bed in the morning and eating good food; giving your employer an honest days work; and finding a way to exercise. These are really basic things, and you may think "What in hell does that have to do with Peyronie's Disease?"

I would argue that when we care for ourselves, we start to see what holds us back, and how we can change. It might allow you to start to see that going to a doctor and sitting down and talking to him can make you feel reassured.

I am a 51 year old physician. I have darkened and thickened small patches of skin on my arm that re the effects of sun damage. I know that high altitude climbing has increased my risk of skin cancer GREATLY. But I am not a skin doctor, or even very good at rashes. When I FINALLY went to the doctor for a regular checkup, in my fiftieth year (having avoided it for 20 years since I was 30!!), my doctor told me that the patches were benigna and not malignant.

I was relieved but I could have done a lot better job all along. In protecting my skin; in seeking help, and in learning what to do to feel better both emotionally (by getting educated) and physically.

I am going to say this flat out: You can do a better job of caring for yourself than you seem to be doing. It should start with a good doctor taking the time to address your fears and concerns and then working on a plan to get better. If you have a dent in the shaft of your penis, it is probably Peyronies Disease. Your erectile difficulties might be emotional or physiological - that can be determined relatively easily. if you have some sort of (apparently minuscule) lesion on the skin of your penis, why not find out what it is?

Unless your penis skin is burned terribly and contracts down with a scar, a skin cut or lesion is not likely to lead to a deformation or problem with function in a penis. The skin is relatively simple there (not too many cell types). It can be (most likely) a follicle with folliculitis, that you have squeezed and poked and probed too much and is not secondarily inflammed. it will heal over time, and may do "better" if you applu vitamin E to it. It is possibly an STD like herpes or syphilis - a good history and physical and culture can resolve that in one visit. It is possibly related to a cream or soap or something and is a skin reaction (ie allergic). it is not likely to be cancer of the skin, since most penises do not get the brunt of sun damage!

My advice to you (and it is worth what you paid for it) is to stop worrying and complaining and acting fearful and to do something to make yourself healthier and smarter. Start with an exam and an answer to your questions.

Tim

[George999]

Tim, thank you so much for your excellent post.  I have been told by more than one doctor (other than you) that faulty self diagnosis is a trap that even doctors fall into and a critical issue in medicine and medical diagnosis is a degree of detachment on the part of the physician.  Some people wrongly assume that education and training are the only key factors to good medicine, but the fact is that it is extremely difficult, due to the normal machinations of the human mind, for even the most educated and well trained physicians to reliably care for themselves.  One physician commented to me that it was not uncommon in medical school for one or more class members to abruptly 'come down' with just the affliction that they happened to be studying at the time.  Its a matter of reading up on some dread disease and suddenly coming to the realization of 'Oh my God.  I have that disease.  I have all the symptoms. I just know it!'  And the reality is of course, its all in their mind, which only becomes apparent after a brief consultation with a psycologically detatched professional who is able to rationally ask all the right questions and perform a few simple inspections.  So I would say to HCTB:  You are not alone in what you are experiencing and a brief visit to a professional can go a long way in bringing relief from your fears.  So WHENEVER you have concerns and people on this forum advise you to get professional help, do yourself a favor and follow through.  There is only so much anyone here can do, you need to see someone who can EXAMINE you physically and advise you.  And as Tim has suggested before, you also need to have a counselor in whom you have confidence who can guide you in the right directions on these issues as well.

- George

[johnnyboy]

I posted a couple weeks ago about what I thought was Peyronies Disease.  I'll briefly recap.

I'm a 22 year old male in college.

A few weeks ago I needed to do a lot of studying for a big exam.  I bought some adderall from a friend and used it heavily for a few days straight.  I have done this many times before and I know how it works in my system.  On maybe the 4th night of continuous usage I went out and got somewhat drunk.  I came back to my place, took some more adderall for fun (dumb idea) and stayed up all night.  I masturbated for a number of hours, however I wasn't hard the entire time.  I orgasmed just once.  I did this for about 5-6 hours.

Over the next couple days adderall usage continued and I realized that my penis shriveled up immensely.  It felt very firm when limp.  The head was also cold most of the time.  Adderall usage contiued over the next 4 days maybe with very little sleep (maybe 3 hours per night?).  I then read up on Peyronies Disease and was convinced I had it.  When I got an erection it didnt hurt, but it bottlenecked somewhat on its way to a full erection.  My full erections were fine.  Btw, i continud to masturbate throughout this week long period.

So I get a urologist appointment.  Supposedly with a doc that specialized in Peyronies Disease.  I had been off the adderall for about a day and I reallyl noticed some improvements in my penis.  It wasnt as firm while limp and it wanst cold anymore.  he examined my flaccid penis and said "I really doubt it is peyronie's."  I honestly thought my penis was back to normal at that point.  He prescribed a 2 week anti-inflammtory prescription and I took vitamin E to boot.  I stopped the adderall for a couple weeks and it seems like everything went back to normal....

BUT, i did notice that my penis goes SLIGHTLY to the left during an erection AND i do get the bottleneck a little bit.  THe bottleneck goes away as the erection becomes full.  Also, I do feel that the left side of my penis, while erect, feels harder than the right.

I took adderall again yesterday heavily in order to cram for 2 exams (it has been about 2 weeks since the last time i took it when this whole ordeal started.)

I read online about how adderall is a potent vasoconstrictor.  I get really poor blood flow to the penis while I'm on heavy doses.  I read about this online with other people too.  When I get off it tomorrow I'm sure things will be back to normal for the most part, except for the slight angle to the left when erect.

So... what do YOU make of all this???

Peyronies Disease?  Fluke?

Personally I don't think I have Peyronies Disease.  I never had any reall pain during this all, I didn't have any trauma other than hours of painless masturbation.  I think i just need to drop the adderall once and for all, stop masturbating for a bit, and see if things heal up naturally (penis extends straight again).  Perhaps some blood vessels were damaged when they were constricted for so long and when I was masturbating.


THANKS FOR READING!

[Liam]

Johnny,

I found your whole post ridiculous.  Discussing the misuse of drugs and alcohol and excessive masturbation would be better suited for a fraternity forum.  There is nothing that ties this to Peyronies Disease.

If your doc says you ain't got it, then, you probably ain't got it.

If you have legitimate discussions directly related to Peyronies Disease, you are welcomed to post.  But, since your doc said you don't have it, go and enjoy college life.


Feeling like the evil Capt. Kirk (Sat. Night Live),

Liam

[johnnyboy]

I don't think I'm out of the woods yet.  The left side seems more firm than the right.  And like I said, my erection goes slightly to the left.  Any advice?  Does my story add up?  Should I still be worried?

[myrddin]

Yes, you should be worried.  I agree it sounds like you have a problem.  But the problem is not Peyronie's, it's your drug and alcohol abuse, and your apparent obsession with masturbation. (5-6 hours?  sounds like you may be a porn addict).  These things will f*** up your life and relationships far more than Peyronie's ever will.

If you've got these things going on in your life, Peyronie's is the least of your worries.  IMHO, you need to be visiting an addiction recovery forum, not a Peyonies' forum.

Best of luck to you.  I truly hope you begin to make healthy choices for yourself soon.

[johnnyboy]

I think I'm getting a raw deal here.  Yes, I am a college student.  Yes, I go out and drink.  Yes, I have used adderall to study for exams.  That's really nothing out of the ordinary.  Yes, I have made some dumb choices here and there, but nothing that can't be fixed.  No, I don't have a drug or alcohol problem.  I'm actually a student at a top university and I will be attending medical school next fall.

Can someone address my problem?  Is this a greater problem than not taking care of myself?  I hope it isn't Peyronies Disease, but never say never.  Am I doing permanent damage by limiting blood flow to my extremities?

I assume now I should
(1) stop using adderall entirely
(2) take a break from masturbation for a while
(3) go see the urologist again in a couple weeks like he suggested
(4) continue taking vitamin E and ?

[Old Man]

Johnnyboy:

First, let me say that I am a 77 plus year old grandfather with three children and eight grandchildren. So, as such I have seen just about everything in the ways of life! I know the ways of the WORLD and have experimented with drugs and alcohol which lead only to disaster.

Now with that said, my advice to you is to clean up your act, get your head on straight before it is too late. I know that college life is rough, but you must do whatever it takes to get your life straightened out. It is highly unlikely that you have Peyronies disease having done all the things you have outlined in your posts. But, you should get a good checkup by a urologist who is experienced in Peyronies disease.

When you have gotten the medical exam out of the way and know for sure that you don't have Peyronies, then get on with your life without all the drugs and alcohol. I know from my own experience that both DO NOT WORK! In other words, I have tried them and they positively do not work, especially at a very young age.

Lastly, you state that you are planning on going to medical school and becoming a doctor. Now consider this, suppose you finished medical school and do become a doctor, what patient would want to see a doctor with a history of drug and alcohol addiction (whether or not you want to accept it now)? I don't think that many patients would be satisfied with that, do you?

So, bottom line, I will be praying for you that you wake up, smell the roses and get your life straightened out before it is too late.

Sincerely, Old Man

PS: You are not getting a raw deal on this forum, you are getting good sound advice and you should accept it for what it is worth. If you are referring to getting a raw deal because of your condition, that too should be enough warning for you to wake up and realize what you are doing to your self esteem and your body. Continuing in your present life style will only lead to disaster! If you would like to discuss anything with me further, use the PM and we can talk privately.

[johnnyboy]

I appreciate everyone's lifestyle suggestions, but can someone please give their input on my Peyronies Disease-related situation?
Do you think I have done permament damage already?
What would be the best course of action to let me body repair and heal?

I'm just looking for input and opinions about my sitaution and how it may progress.

[Old Man]

johnnyboy:

We have given you good advice on what you should do about your situation. The guys on the forum, except for Dr. Tim, are only laymen in the medical field. However, quite a lot of us have had many years of experience with Peyronies and mens health problems. I have a background in counseling with guys

Again, my best advice to you is to get yourself to the best qualified urologist who has experience with Peyronies and get a thorough examination. Only then will you know for sure (and sometimes maybe not know) whether or not you have the disorder.

The things that you related in your posts certainly have the potential for causing major problems with you most prized possession. So, bottom line again, get professional medical help for a solution.

Also, you might consider getting some counseling toward correcting your lifestyle and what you intend to do with your life in the future. If any of us can help you in any way, feel free to call upon use at any time.

Best regards to you, Old Man

[Steve]

IMHO, the best suggestion I can come up with is to go see a good urologist who knows something about Peyronies Disease.  It's very hard for us here on the forum to 'diagnose' someone we can't see.  Besides which, I'm not a Doctor, and I don't play one on TV.

[Tim468]

I would add to those saying to go to a good urologist to see what he or she thinks.

Honesty compells me to say that you are waving red flags in our face left and right - and the biggest flag is where you say: "I don't have a drug or alcohol problem."

It may be ordinary to use adderal before a test. It was "ordinary" to use amphetamines before tests when I was in college. But I never saw a single student thrive who did so. I saw lots of folks fall by the wayside.

In medical school the most I ever saw or heard of was drinking coffee. That is a long way away from the illicit use of an illegal prescription drug, designed for ADD/ADHD.

So in addition to seeing a urologist, I suggest that you notice what people are saying to you. You are brushing it aside as irrelevant and it is not. And should you be unable to notice what you are saying, and how it really is, then at least stop jerking off so much and give your penis some rest.

Tim

[George999]

First of all Johnny, take the time to read over this site and LEARN more about Peyronies disease.  There is a wealth of information here already and it would be a waste of time for us to sit and type it all out for you over again.  Secondly, you give every indication that you are not really paying attention to what we are already telling you to do.  You are all in a panic over this thing and the answer is to see a good urologist AND LISTEN to what he tells you.

AND ...

I agree with Old Man on this 100%.  Sometimes it takes a 'raw deal' in order to get our attention and get us to change some attitudes.  And if this raw deal doesn't achieve that, I am sure that you (Johnny) are going to face more raw deals along the way and they are only going to get rawer.  What you have done at this point is no 'big deal'.  I think that most of us here, including myself, for one, can all look back at some pretty stupid things we have done in the past.  But the hard part is to acknowledge where our attitudes and resulting actions are taking us and to be able to stuff our pride and say 'God, what ever it is I'm doing is screwing up my life and I need help because I can't handle it all myself.'  Once one gets to that point things get easier.  But until that point, life often just keeps getting tougher and tougher.  And if you need drugs to cope with your class schedule, you need to start by spending less time partying and more time studying, and perhaps even lightening your achedemic load, because the way you are going, you are going to fry your brain and who knows what all else (you might even discover that there are things you will miss more than your penis) before you graduate.  And hopefully what you are hearing here scares you because you obviously need to be scared.  Your potential is awesome, but you are risking throwing all that away for a few cheap thrills.  People here love you with no strings attached.  That is why they have the boldness to tell you the truth even though it hurts.

We wish you the best.  There's lots of good information here on this site.  Take it in and digest it and if you eventually do get diagnosed with Peyronies we are all here for you.

- George

[johnnyboy]

I saw a urologist exactly 2 weeks ago.  He did a fellowship with Peyronies Disease after med school, so I am hoping he is a very good urologist.

I'm seeing him about in another couple weeks for a follow up.

I'm definitely going to kick the adderall.  I don't need it to get my work done, I just need to not procrastinate as much.  Something I'll really need to conquer in med school.

And as for "defending" myself, whatever.  I've never met any of you, all you know about me what I bluntly posted this morning.  I guess I didn't paint a beautiful portrait of myself, but that wasn't my intention.  I wanted to give you the straight, honest facts of the matter.

That being said, I'll keep you all updated with my condition and how it progresses.

[Old Man]

Johnnyboy:

Good for you about seeing the urologist. You should have stated in your post that you had seen one lately and the picture would have been different for us old codgers on the forum. Since most of us older ones have been through a lot in our lives, posts like yours sends up red flags.

Getting those things off your chest and out in the open may make you realize now that they were bad for you and change must be in order. Only you can control which direction your life will take, so choose wise my son. If I could go back to your age and start over with my present knowledge, there would be many changes. I saying all this to say that you have your entire future in front of you and now is the time to choose the direction.

Do hope that I have not offended you in any manner with my comments, but I just felt led to make them as I saw it.

Sincerely, Old Man

[wasa]

Hi,

Got a question, don't really know where to post it. Since english is not my native language, I'm having some problem picturizing the word 'bottleneck/hourglass shaped" penis. I think i have a fair idea of it, but just to be sure, could somebody perhaps give a good explanation of it, perhaps even a picture, says more then a thousand words after all..

[Tim468]

Sure - how about with ASCI art?

"Hourglass" is:

|            |
|            |
|            |
\            /
\          /
 /         \
/           \
|            |
|            |

and "Bottleneck" is:

   _____
  |       |
  |       |
  |       |
 /         \
/           \
|            |
|            |

An hourglass is a constriction in midshaft, and a bottleneck is a constriction nearer to the end that never flares back out.

To better understand such statements in the future, I recommend going to "www.google.com" and typing in the word. Then click on "images" as a review option. Doing that should give you an idea of the image. Adding the term Peyronie's may help.

Of course, I got this when I hit "hourglass" today to test this theory:

[Liam]

                                     
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OK Now it looks familiar

[DannyOcean]

Who here has had there testosterone levels checked?  What were the results?  Three reasons I ask:

1.  I just got done reading the book The Testosterone Syndrome and it makes a pretty compelling case that a good number of physical ailments are caused by a depressed level of testosterone in the body (which is likely caused by environmental factors, stress, lack of exercise, poor diet, etc.)

2.  I've been feeling a lack of libido lately and to be honest this seemed to start around the same time as I contracted Peyronies Disease.  I'm wondering if there could be a connection here.  Even something as simple as depressed test levels resulting in less rigid erections which could injury during sex more likely.

3.  I've recently self diagnosed myself with BFS, a condition in which you get a lot of involuntary muscle twitching.  I was browsing a set of forums about BFS tonight and searched for "testosterone" and found that a good number of people with BFS had tested low for testosterone.  I'm thinking there could be a BFS-low test connection and I'm also thinking that my BFS could be related to my Peyronies Disease somehow (since they both started around the same time).  If those turn out to be true then a Peyronies Disease-low test connection is quite possible.

Thoughts?

[Tim468]

My T levels have slowly dropped over the years, I am certain, although I only finally got it checked recently. I do not know for certain, but have some clinical reasons to believe this. My Peyronies Disease, however, predated the declines - I am pretty sure of that (based on fertility and semen volume and other indicators of how high the Testosterone might be).

The recent worsening in my case might be related however. I will check out the book.

Tim

[Hawk]

Danny,

I think it is clear that reduced erections are a factor in many but not all cases of Peyronies Disease (aging, diabetes, prostate surgery, stress, BP meds).  To that extent, and maybe through other channels, I think low testosterone levels could at least contribute to Peyronies Disease.  The question is whether this is a direct cause or an indirect contributor.  Based on my many years as a computer geek, I think it is the latter.  

[DannyOcean]

T levels will typically decline about 1% a year after 30.  That's normal.  However, if many of us have below average T levels that could have contributed to the injury in the first place and also could hamper healing.  One of the theories related to health and T level is that as people's T levels drop (regardless of age) they are more susceptible to illness because the body perceives that they are no longer replicating and therefore less "useful" to the ongoing operations of the planet (in the words of one of my favorite singers Eddie Vedder "It's evolution baby.").  Therefore one of the most important things you can do is to ensure your T levels remain high so that your body say "Hold on...let's keep this dude around."  

If that theory holds water than it's quite possible that there could be a correlation between appropriate T levels and the body's ability to heal itself from Peyronies Disease.

[Hawk]

they are more susceptible to illness because the body perceives that they are no longer replicating and therefore less "useful" to the ongoing operations of the planet (in the words of one of my favorite singers Eddie Vedder "It's evolution baby.").  Therefore one of the most important things you can do is to ensure your T levels remain high so that your body say "Hold on...let's keep this dude around."  

The problem with that approach is that it shows a very flawed understanding of the theory of evolution. Evolution perceives nothing.  Evolution does not perceive usefulness or lack of usefulness.  Perception by definition, suggests intelligent design.  Evolution also does not give a damn about the operations of the planet.  Evolution and survival of the fittest simply operates on the theory that what is less fit is less likely to reproduce and get added to the gene pool.  it would follow that that those with low testosterone reproduce less and low testosterone would become a very scarce trait.  Again though, declining testosterone indicates they all ready reproduced when they were younger.

Frankly, I would tend to dismiss a person that advanced such an unscientific approach.   If he simply presented observable studies connecting low testosterone to such conditions, and demonstrated that the reduction in testosterone was the cause instead of just another effect of aging, that would get my attention.  It drives me nuts when people try to make science "cute" to sell a book or explain a concept.

[Steve]

Evolution asside (I don't want to get into that discussion) the possible correlation between T levels, and an incidence of Peyronies Disease may point to a possible reduction in the incidence of Peyronies Disease.  If such a correlation can be proven (I don't have the skills to do it -- how do we find researchers who can?), we might be able to save future sufferers from the personal h**l that we've all experienced!

IMHO, we need to keep an eye on this.

[Hawk]

This is only my opinion with very few facts:  

I think verifying whether there is a connection would be as simple as testing A hundred men near onset of Peyronies Disease and 100 men of comparable age and see if there is a pattern.  It is very unsophisticated and any General Practitioner (with access to the men) could do it.  In fact it is so unsophisticated that I cannot believe it has not been done.  It would be the joke of the century if doctors failed to make that connection.  We also have men here that are on testosterone replacement therapy.  I do not recall that they have reported a connection between the testosterone replacement and their Peyronies Disease improving.

Also remember that testosterone carries health risks as well reducing other risks.  That is even true of naturally produced testosterone.  While I think it might be a contributing issue in some cases, I predict that a  hard connection (no pun intended) will not be found.

[George999]

But my honest opinion here is that the whole Testosterone thing is a rabbit trail.  Certainly IF you have ED AND IF you also have abnormally low testosterone, that would be something to pay attention to.  But Peyronies?  When you look at what is currently the number one most effective (and probably ONLY viable) treatment for Peyronies, Pentox/Arginine/Viagra, you are looking at a treatment that facilitates delivery of oxygen and nitric oxide AND attacks free radicals and inflammation.  That is precisely where the cure for this disease will be found and that is the direction we should be looking toward.  Sure, stuff like collagenaise may prove beneficial in quickly blowing away major plaques and other techniques like the VED have proven their usefulness in preventing progression, but the ultimate cure revolves around oxygenation, nitric oxide, anti-oxidation, and anti-inflammation approaches.  This is the root of the problem with Peyronies as well as almost all other degenerative diseases.

[Tim468]

Testosterone, though, can affect our immune system and cellular function in a myriad number of ways. I have read reports of finding testosterone receptors on Dupeytren Contracture cells in cell culture. There are all sorts of possible connections. The easiest one to make is decreased erection quality and a higher propensity to injury, but that owuld be only a starting point.

The fact is that the world's literature on this problem is inadequate and studies like this have NOT been done.

Tim

[George999]

Tim, I think you are absolutely right on this.  But you would also have to acknowledge that once you get into discussing the issue of hormones, there are a whole host of hormones out there that are subject to abnormal deviation that could very well play a role in Peyronies.  Testosterone, Estrogen (yes guys have estrogen too), Aldosterone, Cortisol, Epinephrine, and more ... the list is nearly endless.  So, yes, I think if one suspects that one of these is out of range, that should be treated.  But that, in and of itself, will not fix the Peyronies syndrome which is, by its nature, a degenerative process that takes on a 'life' of its own.  Thus, Peyronies will still have to be treated separately from whatever hormonal issues exist that may have set the stage for it.  I personally am convinced that there are a number of scenarios that can 'set the stage' for Peyronies, and all that remains to happen is the infliction of a minor trauma, which would otherwise go unnoticed, and bang!  You suddenly, out of nowhere have Peyronies and suddenly feel guilt over some 'stupid' thing you did to cause it OR 'anger' over some medical procedure or medication that must have caused it.  So my gut feeling is that the whole Peyronies thing is more complex than we can even imagine.  In the midst of this, I am extremely thankful that certain reliable treatment vectors are being identified that are being shown to bring relief without regard for whatever it was that initially set the stage or whatever it was that eventually tripped the switch.

- George

[DannyOcean]

Tim, I think you are absolutely right on this.

- George

I agree with you.  I'm starting to see what I think is the inter-connectedness of all of this.  So I'm reading the book The Hardness Factor and thinking about the correlation between erection hardness (something that can be measured according to this book) and Peyronies Disease.  My guess is that if you had tested a number of individuals before they contracted Peyronies Disease they would probably have tested below average on erection hardness.  The things that depress erection hardness are more or less the same as those that lead to low test (e.g., stress, obesity, smoking & drinking, lack of exercise).  So I'd venture to say that normal to above average test levels and normal to above average erection hardness both help to prevent the onset of Peyronies Disease.

Having said that, the more important question for us is whether these things help the healing process as well.  I don't have any solid evidence to suggest that they do but my guess is that there probably is a correlation.  Unfortunately it's something that we don't have any studies on and therefore it'll have to stay at the intuitive level for now.

[kenm]

I thought I was the only one with BFS and Peyronies Disease.  Interestingly I think my libido is stronger since I started taking udamin which is a presription vitamin specifically for prostate health.  Another strange issue is cialis.  Its only supposed to last 36 hours but after taking only 5 mg i can feel the affects for days.  Then on might ask why do I need it.  I think its a part safety blanket.  I

[Tamarack]

I see the world doesn't stand still when I'm out in the woods -- lots of discussion since I was last here!

Tim, you're a real doctor! When I teased my mate about a prescription from "Dr. Tim" for a daily erection, I had no idea. Now that prescription will carry some weight!

Johnny, I feel for you. Only so much can be inferred from a few posts, and yet they indicate that you are pretty deeply enmeshed in a victimization-enabling pattern. But what really tears at me is a far deeper issue -- your seeming struggle to find inspiration and meaning in life. In this day of shallow values and gross materialism, so many young people find themselves in the same boat as you. As a counselor, I work primarily with people like you, and if I might be of help to you in some way, please contact me.

Re: the effect of testosterone and other hormones on Peronie's disease, my time in bird genetics and breeding impressed upon me the complexity of the interrelationship of the various components of an organism. For example, if there is a correlation between uncharacteristically low testosterone levels and the onset of Peronie's, it may be only one of several correlations, and perhaps not the critical one.

Which brings up my growing awareness about Peronie's disease: the more I learn about it, the more I view it as a syndrome rather than a disease. It appears to be akin to Chronic Fatigue syndrome, in that it may have a variety of causations, and what we view as the "disease" is merely symptomatic of these various causations.

Question: Is it helpful or hurtful to knead the scar tissue during erection?

Tamarack

[DannyOcean]

Hey kenm, it looks like we're brothers in arms!  

I've spent a bunch of time on aboutbfs.org and what's uncanny to me is the similarities between Peyronies Disease and BFS.  No real known cause...lots of speculation about what to do to help it but no clear solutions...not life-threatening but highly annoying and worse in some cases...Interesting huh?  FWIW (and this is the last I'll say about BFS here) I've found that an electrolyte drink called ELyte seems to help.  It's like Gatorade but more electrolyes and no sugar, calories, etc.  Hasn't cured me but definitely seems to help.

And for the record I do think there could be a connection here between these two things...just haven't quite figured it out yet.

I thought I was the only one with BFS and Peyronies Disease.  Interestingly I think my libido is stronger since I started taking udamin which is a presription vitamin specifically for prostate health.  Another strange issue is cialis.  Its only supposed to last 36 hours but after taking only 5 mg i can feel the affects for days.  Then on might ask why do I need it.  I think its a part safety blanket.  I

[gibson101]

Greetings

Has anyone here live in London and know of a urologist who specialises in this problem?? I have seen a urologist but was not satisfied with his knowledge. I even felt I knew a bit more about it than him at times! Need to go ASAP as im still in the first month and want to attack this early

Regards