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allj

George: Actually, one of the side effects of beta blockers (toprol) listed in the PDR (physician's desk reference) under miscellaneous side effects is peyronie's. Even my heart specialist didn't know this.  Alan

George999

allj,  REALLY?  This has to be pretty new.  The last I knew Peyronies wasn't on the list and neither was Plantar Fasciitis.  Its about time.  Researchers have suspected it for a long time and I can tell you that it was AFTER I quit the beta blocker that my longstanding Plantar Fasciitis miraculously disappeared, but of course Peyronies is not so easy to reverse.

asmith

6/20/2007

hello.  this is my first post.  i really need some help.  i'm severely depressed.  Please hear my story.  first of all, i'm 26 years old, was sexually active, never had any sexual problems, and had a relatively straight penis with no erection problems.  About 4-5 months ago, i injured my penis while having sex with my fiance.  just about one month ago, it started curving.  the curvature has worsened and the pain has intensified.  it now hangs, when flacid, about 45 degrees to my left.  when erect about 25 degrees to the left and its slightedly twisted upwards (never like this before).   i've seen 3 urologists already.  each offering different opinions and advice.  the first told me that it was fractured and said thats its too late to perform surgery (since i supposedly fractured it a few days before meeting him) and to wait and see.  i seen him again a month later.  he told me i have Peyronie's and he could feel a scar.  he suggested an MRI.  the second urologist said that he couldn't feel anything.  he also said that penile trauma was not possible cause of Peyronies.  the third uroloigst i've seen, a well-respected and known urologist in the medical field on Peyronie's i found on the net, Dr. Laurence Levine from Rush Medical Center Chicago, told me that he didn't feel a scar neither.  he prescribed L-arginine, pentoxifylline, and celebrex.  he suggested that "extender" or stretcher others have mentioned on this post, also injections of verapamil, but suggested to wait.  

In essence, i'm very confused and distressed as to how to proceed.  my curvature is worsening about every week.  my pain will not go away.  something is obviously not right.  my erections hurt.  i'm in pain from the tip of my penis to the base all day long.  the pain along with the curvature is killing my job (i'm probably going to be fired soon and lose health coverage), sexual relations with my fiance, and much more (lost $ in the stock market--was a part-time daytrader--the pain affected my trade decisions and thoughts).   my outlook on life is dark.  this is no exaggeration.  the pain and distress has become so bad that i've considered the worst lately...and with someone like me, who has the balls to make regular day trades of $80,000 a trade like its a walk in the park, having the courage to harm myself will not be easy, but i've got enough in me to do it.  i've have been planning to give up on all of this soon.  PLEASE RESPOND. OFFER SOME FORM OF ADVICE, CONSOLEMENT.  i never knew something like this could bring a  man down so low. i've done lots of research on penile fratures, peyronie's disease, penile trauma, modes of treament, etc. i've read through most of these posts and posts from other forums---with all due respect, spare me simple general info.  thank you so much. my email is:  [email protected].  PLEASE HELP ME.        

Liam

Brother, you are in the right place. We have all been there.  I cannot tell you what will happen medically.  The pain will improve,though, regardless of the cause and the mental anguish will get better.  Please don't hesitate to seek professional help.  Any man here will tell you there is no shame getting help from a mental helth professional.  There are good medications that will help bring your life into focus.  Many of us here use these.  They will help.  Right now your mental health should be your priority.  It is an illness, too.  It requires treatment now.

Dr. Levine has a outstanding reputation and I would not hesitate to follow his advice.  

Please call and get an appointment with a psychiatrist now.  That will help you more than anything.


Good Luck!

Liam

"I don't ask why patients lie, I just assume they all do."
House

asmith

Liam,

Thank-you for your thoughtful and caring advice.      

George999

Welcome asmith!  So sorry to hear that you are going through this traumatic experience.  So far you have gotten some off the wall advice from several doctors and that adds even more confusion to the mix.  But I want to tell you that Dr. Levine not only has a great reputation around here, but the advice he gave you sounds right on the mark.  I would urge you to start following that advice IMMEDIATELY if you haven't already done so.  Secondly, I would not worry about the heavy pain (I've been there, its quite normal and will pass), OR the abnormalities in your erections (they are to be expected and may get better even to the point of completely going away, ESPECIALLY if you take the medicine Dr. Levine prescribed for you.)  At only 4 - 5 months, you are getting an early start on this AND you are still young which I think would indicate that you have an excellent chance of regaining your penile health.  Pentoxifylline is absolutely the best drug out there for Peyronies.  If I were in your position, I would also make an effort to get on an anti-inflammatory diet which means things like olive oil, fish oil, flax seed oil, fish, etc. and severely limiting things like corn oil, red meat, etc.  You: On A Diet by Oz and Roizen is a great guide to restorative diet and exercise.  But at 26, I certainly wouldn't throw away my life over something like this.  You just have to great a future ahead of you.  Don't be afraid to ask for help.  Dr. Levine is on your side and is giving you great advice.  All of us here are wishing you the best.   And there are professional counselors and spiritual advisers out there who can be a great help in these times as well.  But you have to seek them out.  On the way, don't let yourself be 'bummed out' by the stupid things that some insensitive people might say.  Just put them out of your life and keep looking because the support is out there, but you have to take the initiative and seek it out.  Also, be aware that your mind and body are connected and your 'dark thoughts' can be interfering with the healing process.  So it is important to build your support network and also to make sure you get plenty of exercise, both of which will help to relieve the dark thoughts.  In times of crisis it is easy to see everything in the future as being dark, but with a little patience, the sun can come out quite unexpectedly.  - Sincerely, George

asmith

George,

  Thank-you.  very caring and insightful comments.  i appreciate everything you said.  thank-you. God bless you and Liam.  

how do you and Liam know of Dr. Levine. have you been treated by him?  

dahc

asmith,

When I first started searching for information on Peyronie's a few months back Dr. Levine's name kept coming up. I was impressed and scheduled a telephone consultation. He recommended the same treatment plan that he recommended for you with exception of the Celebrex. He also helped me find a urologist in Atlanta that had a clue about Peyronie's Disease. It sux that you have P.D. but you have access to an excellent doctor that knows much more about Peyronie's Disease than the average urologist.

C

George999

I can only speak for myself, but when you are on this forum for a while rapping with guys from all over the US and all over the world, you begin to discover who the good docs are.  Even the good docs don't always agree with each other as to what the best treatment approaches are, but their treatment philosophies make sense.  The advice you got from the first two docs just didn't make a whole lot of sense to me.  In the case of Dr. Levine, his advice to you makes perfect sense and the advice he's given others who have posted to this board has made sense.  Every thing I have ever heard about him indicates that he really knows his stuff when it comes to Peyronies.  And he is one of a small handful of docs that I could say that about.  You are in good hands with him.  You can trust him to do his best to help you through this and he is a VERY talented and capable physician.  - George

asmith


Liam

I have seen his research, articles, and studies.  Try Googling Levine and Peyronie's and see what happens.  WOW!
"I don't ask why patients lie, I just assume they all do."
House

Hawk

ASmith,

Welcome to the forum.  You have received good immediate input so I will only add my best wishes and touch a couple issues.  As George mentioned, your mind and body work together so please attend to your frame of mind.  You know best if that means a GOOD psychologist, a spiritual counselor, or some meditation, music, and uplifting activities.  If thoughts of hurting yourself continue, professional help is a must.

Take comfort in the fact that you can take Levine's advice to the bank.  If you start his protocol immediately you will be fighting back.  At your age and considering the cause of your onset, you have good odds.  Even with worst case scenario, the pain will disappear, and your power to deal with the psychological aspects will improve.

When you work on the Peyronies Disease issue (pentox, traction, etc) focus on that.  When you are at work, put Peyronies Disease out of your mind pour yourself into your work. You can master this.  With the effort I know you are capable of putting out, you can turn the Peyronies Disease, the psychological issues, and the work in a positive direction.

Take care my friend.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Liam

Welcome Sombre Soul (see "Our Histories").
Quote from: SombreSoul on June 21, 2007, 06:27:27 AM

Have you been to a urologist?  It sounds like you have a congenital curve.  I don't think I'm going out on a limb on this.  Peyronies Disease is not normally thought of to start that early (12 years old).  But, regardless if it is Peyronies Disease or not, see a doc.

QuoteIt's strange because she has pleasured me with her mouth and hand several times (in a dimmly lit room) and she hasnt noticed the curve (once the penis is in the hand or mouth it's kinda hard to notice the bend as the bend begins at the base and because it doesnt get that hard anymore, it's easy to bend it upwards). I have a feeling that it wouldnt bother her as my penis does still work i guess. But the poor girl thinks she's with a fully functioning male. Have i deceived her by not yet telling her of my curse??

Dim lights or not, I'm sure your girlfriend has noticed.  Don't fool yourself.   SHE IS STILL THERE!!!  Have you tried Viagra?  OK, you should tell her about your condition (calling it a curse is negative language and also just dead wrong).  Just tell her and explain it in medical terms.  Try to leave the negative emotional language out.  If you work together, you will both be satisfied! ;)  BTW, how much of a curve is there?  You need to read Tim's article on Peyronies Disease and intimacy on the website that goes along with this forum (see link to website above).

As I advise all men in a similar situation, get help.  Some kind of professional counselor will help you see things clearly.

Good Luck
Liam
"I don't ask why patients lie, I just assume they all do."
House

SombreSoul

Quote from: Liam on June 21, 2007, 07:55:43 AM
Welcome Sombre Soul (see "Our Histories").

Have you been to a urologist?  It sounds like you have a congenital curve.  I don't think I'm going out on a limb on this.  Peyronies Disease is not normally thought of to start that early (12 years old).  But, regardless if it is Peyronies Disease or not, see a doc.


Have you tried Viagra?   BTW, how much of a curve is there? 

Thanks for the welcome Liam,

I havent seen nor told anyone about this problem. What is a congenital curve and how does it differ from curves that develop later in life?

I've never tried viagra. What does it do? I have a rough idea but dont know exactly.

If you put a banana against your groin and face the curve downwards then thats roughly what i look like down there. I may have a little less of a curve. I never really get hard enough to know for sure.

Hawk

SombreSoul,

You share a heart wrenching story but not because of the condition of your penis.  It is because of how you have let such a thing define your life up until now.  I am confident that is going to change if you want it to.

First, your companion totally knows the condition of your penis if it has been in her mouth.  She knows how hard it gets, its size, and shape.  Nothing can be more obvious than the fact that it is certainly not a problem for her.  

Viagra will give you a more firm erection for the period of time right after you take it provided you have sexual stimulation.  Before you go that route, make sure it is not already firm enough.  Women expel 9 pound babies through their vagina.  They can accommodate any curve you have to offer.  The worst case scenario is that you may have to try different positions and the the experimentation is as much fun as finding what works.  Unless you are not hard enough (try lubrication like K-Y jelly if need be) then don't worry about Viagra.  If your curve is very pronounced then being a bit less erect may actually help.

Finally, I am fairly certain you do not have the progressive disease known as Peyronies Disease.  As Liam said, it is not a disease that begins as a boy starts into puberty.  Additionally it does not start because we sleep on our stomaches.  All health males get night time erections beginning prior to birth.  If position in the bed, crib, diaper, or jeans caused Peyronies Disease then most men would have it.

You can see a good urologist now or first confirm just how you work in a real loving situation with someone that cares for you, not just the few ounces of flesh between your legs.  If it goes as I suspect it will after a few episodes, you will begin to wonder why you ever let this rob a moment of happiness from your life.

Good luck

PS: On a more general note, you will find life much more full of joy if you confront and solve all problems as they arise, not hide them is shadowy secret or avoid addressing them.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tim468

The stories you tell are a bit sad, but the key to health is honesty and self-care. You are starting down the right path by seeking help. Now you need to accept it.

I am an independent man - I do not take advice easily. I don't like seeming to be "weak". But in fact, recognizing my connection to other men and women, and my dependence on them, is key to my health and well being.

Master of my domain? I don't think so. When I walk into my bedroom at night, I flip on the lights, and I have NO idea how that works. Oh, I sort of get electricity, and electrons, but filaments, grids, generating stations... forget it. Yet I depend on electricity in my life on a daily basis. So there are many things in my life that I depend on that I do not understand, and that requires faith. You may not think that you have faith, maybe not int he religious sense, but trust me, if you turn on your lights, you have faith. And you depend on the good work and diligence of others.

So now you are here. You are going to have to set aside your pain and accept the help you have been offered. If you stay awash in the sadness that life is different than it used to be, then you will never get better. ASmith, you have gone to a nationally recognised expert on Peyronies Disease - take his advice! Be sad, but go ahead and take his advice!

SombreSoul, I think that you are describing a penis that A) works, B) does not offend or bother your partner, C) has a congenital curve of seemingly little consequence, and D) you are ashamed and sad out of proportion to the "problem" that you describe.

But you guys are here now. There are therapies that seem to help many guys out there, so help yourselves. SombreSoul, if your penis has a "terrible" bend to it, then that can be straightened somewhat by surgery. Just recall that most men with a functioning penis that pleases their partner opt to NOT have surgery that carries the low but present risk of leaving you with decreased sensitivity and/or erectile dysfunction. And go speak to a urologist! I would not be surprised if your weaker than normal (perhaps...) erections are due to psychological stress you have created by worrying.

ASmith, you may very well be a good candidate for medicinal treatments that work helping you. Additionally, you may be a good candidate for surgery if medicine does not work, since you had a discrete major injury (which may argue against a general problem that might recur later after surgery). Either way, the odds are good that you will get all better.

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

Tim468

A great and terrible rain came, and it started to flood. As the flood waters rose, rescue crews went forth to save people. The volunteers waded up to the front door of a woman trapped in her home and asked her to come with them. But she refused, saying "God will provide".

The next day the firemen rowed a boat up to her second story window and again begged her to come with them, but again she refused, saying "God will provide".

Finally, on the third day, the coast guard flew overhead with a helicopter and lowered down a basket to her, as she clung to the top of the chimney in the onrushing waters - they begged her to jump in. But again the pious woman refused, saying simply "God will provide".

And so she was swept away and she drowned.

She had led a good life, and so she did go to heaven, where she gratefully entered the pearly gates. But curiousity got the better of her as she walked through - stopping to ask Saint Peter a question. She said, "Saint Peter - I always led a good life, I prayed every day and went to church every Sunday - and yet you let me drown in my moment of need? Why did you decide to take me home now??"

He glanced up at her and said, "Lady, I provided you a volunteer, a fireman and the coast guard helicopter - what more did you want?"
52, Peyronies Disease for 30 years, upward curve and some new lesions.

jon

dunno if this should be here or in off topic, but I'm gonna post it anyway. As I understand it Dr Levine (Chicago) and Dr Lue (San Fran) are THE men to see about this disease. Being as how expensive SF is, and the fact that I'm just tired of Texas, I'm looking at possibly moving to Chicago. This brings me to the point of this post: anyone have any leads in the IT field in Chicago, or can put my resume in front of some people there so that I'm not in the craptastic position of relocating without having a job lined up?
I figure putting me closer to guy on top of his game in treating peyronie's, as well as doing some research, can't be a bad thing.

Liam

This kinda made me feel better ;)

QuoteBMJ 1999;319:1596-1600 ( 18 December )

Papers
Magnetic resonance imaging of male and female genitals during coitus and female sexual arousal
Willibrord Weijmar Schultz, associate professor of gynaecology a,  Pek van Andel, physiologist b,  Ida Sabelis, anthropologist d,  Eduard Mooyaart, radiologist c.  

a Department of Gynaecology, University Hospital Groningen, PO Box 30 001, 9700 RB Groningen, Netherlands, b Laboratory for Cell Biology and Electron Microscopy, University Hospital Groningen, c Department of Radiology, University Hospital Groningen, d Department of Business Anthropology VU, De Boelen 1081C-NL, 1081 HV, Amsterdam

Correspondence to: W Weijmar Schultz [email protected]

   Abstract
Top
Abstract
Introduction
Subjects and methods
Results
Discussion
References  

Objective: To find out whether taking images of the male and female genitals during coitus is feasible and to find out whether former and current ideas about the anatomy during sexual intercourse and during female sexual arousal are based on assumptions or on facts.
Design: Observational study.
Setting: University hospital in the Netherlands.
Methods: Magnetic resonance imaging was used to study the female sexual response and the male and female genitals during coitus. Thirteen experiments were performed with eight couples and three single women.
Results: The images obtained showed that during intercourse in the "missionary position" the penis has the shape of a boomerang and 1/3 of its length consists of the root of the penis. During female sexual arousal without intercourse the uterus was raised and the anterior vaginal wall lengthened. The size of the uterus did not increase during sexual arousal.
Conclusion: Taking magnetic resonance images of the male and female genitals during coitus is feasible and contributes to understanding of anatomy.



Fig. 3.   Midsagittal image of the anatomy of sexual intercourse (experiment 12). P=penis, Ur=urethra, Pe=perineum, U=uterus, S=symphysis, B=bladder, I=intestine, L5=lumbar 5, Sc=scrotum

Source (complete paper and illustrations) - http://www.bmj.com/cgi/content/full/319/7225/1596
"I don't ask why patients lie, I just assume they all do."
House

SombreSoul


Thanks for the advice Hawk. It's actually given me some hope!

Quote from: Hawk on June 21, 2007, 09:51:49 AM

You can see a good urologist now or first confirm just how you work in a real loving situation with someone that cares for you, not just the few ounces of flesh between your legs.  If it goes as I suspect it will after a few episodes, you will begin to wonder why you ever let this rob a moment of happiness from your life.


So what does a urologist do? If i was to see one, what steps would be taken and what what advice would a urologist give?

Thanks in advance,
SS

Liam

Sounds like a new Bob Dylan song.

QuoteSo what does a urologist do?

He or she is the wee wee doctor.  ;)

QuoteIf i was to see one, what steps would be taken and what what advice would a urologist give?

He/she will have you pee in a cup.  He/she will have blood drawn (psa for prostate) The doc will examine you.  That means drop your drawers and he will squeeze your penis.  He will do a DRE (finger in the butt checking prostate)  Based on what he finds, he may order more test.
***Ask for Viagra while you are there.***   ;).  It will make the trip worth it.

If any of us could tell you what the doc would advise, you wouldn't need to go.  Recommendations are based on diagnosis.  It would be a good idea to rule out a few of the nasty diseases and/or conditions.  You definitely need to go.
"I don't ask why patients lie, I just assume they all do."
House

Tim468

I read that with interest when it came out, along with an interview with the couple who did the deed in the name of science.

What was really new is that there is a great deal of natural curvature to the entire erectile shaft. I am not sure that this will have much impact on sexual medicine, and it made me wonder about just how creepy a doc might be who decided to make this a research project.

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

Liam

MRI during sex makes sex photos not seem so kinky.   ;)

Who funded this anyhow?
"I don't ask why patients lie, I just assume they all do."
House

Hawk

Liam,

your MRI image raised a few questions.  For one, why the hell is that I am not allowed to flinch a muscle during a 30 minute MRI if these people can do the horizontal mamba.

I also wondered how much of this was scientific vs. just a kinky MD.  It was interesting but you have to wonder if the doctors next research project might be ascertaining nutritional value of eatable underwear.  
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

If you go to a good urologist, he will do an examination of the penis to try to feel for plaque (scar tissue).  He will also likely stretch your flaccid penis to see how elastic the tissue is,  With a skilled uro, this exam takes only a very brief time often measured in seconds.  From there it is anyone's guess.  A uro doing a general exam, just like a good family doctor may do a digital prostate exam but since you are going for a specific problem he may follow his gut feelings and check for other issues.  He could order a test like imaging if he thinks he needs more info.

Be prepared to share an accurate history of when you first noticed the curve, its progress, history of erectile problems etc.

The visit should leave you with some sense of greater information on what your exact problem is and how to proceed.  Rest assured that although this is a new experience revealing this info, that to him it is second nature and he can do doubt carry on a conversation about fishing while performing his exam.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Liam

Welcome Johnny!  

You had a congenital curve.  What made the doctor diagnose Peyronies Disease in addition?  I'm sorry for the bad news.

We are glad you decided to join us on this forum.  Jump in any time.

Liam
"I don't ask why patients lie, I just assume they all do."
House

Johnny

The doc diagnosed it based on the plaque buildup, pain and bend.


Liam

That may have seemed like a silly question.  Sorry.

The pain and plaque are new and the curve started taking a right hand turn.  Was the Urologist familiar with your congenital curve before he diagnosed Peyronies Disease?  This is the first case I've seen on this forum of a congenital curve and Peyronies Disease, a double whammy.  Its a shame they aren't on opposite sides to cancel each other out. ;)  Keep us informed on the Verapamil treatment.

Liam
"I don't ask why patients lie, I just assume they all do."
House

Johnny

He was familiar with the congenital curve a couple of years ago, long before the Peyronies Disease diagnosis. Today I start my first round of VI.

Murphy's law sure did it's work this time!

Johnny

hortenis

I have fairly severe Peyronie's disease. I'm also a physician (not a urologist) and I have some professional expertise that helps with researching and analyzing these kinds of topics.

I've created a blog to accompany my research. It's a personal voice, and I'm very science oriented, so that's what it reflects. No ads, no alternative remedies -- it's my voice, so I get to pick.

If this is something you're interested in it can be found here:
http://thebentnail.blogspot.com/


I'll be browsing the forums here, looking for ideas I can follow up analyzing the biomedical literature and posting the results on the blog.

"Hortensis"
[email protected]

Steve

Welcome Hortensis...it's always nice to get a physician's view on our problem.

When I first read you post, I was going to ask that you post your information here to the forums in addition to your blog, but after reading your blog, I realized that your quantity of information would quickly overwhelm the forum!  You've got a LOT of information in there, and much of it seems very 'medical' (which is not to say that it's hard to understand, but it takes a lot of attention and thought.

Instead, I'd like to ask that you post here items that you deem 'important' to all of us, with links to your blog.

Again, Welcome to the group, and I hope to hear much more from you and your research.

Steve
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

Hawk

Steve,

Just as a point of clarification:

Our PDS forum is unlimited in its capacity for members, posts, activity, topics, and different boards and moderators of those boards within the forum (such as Advocacy, Resource Library, etc).  We also have the ability to structure any board with a unique look, color scheme, banner, its own posting rules, who the board is visible to, its own unlimited topics, and its own moderator to control that area,  This gives the forum almost unlimited structural flexibility and capacity.

I make this point only so future ideas will not be dismissed simply because of a misunderstanding of the forums capability.  In fact, we invited one organization with a now inactive forum to participate with us.  We offered them their own board within the forum with full moderator control over that board for making announcements of general interest to the Peyronies Disease community.  In that particular case, they did not choose to reply to our invitation.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

hortenis

Quote from: Steve on July 05, 2007, 09:18:14 AM
Welcome Hortenis...it's always nice to get a physician's view on our problem.
When I first read you post, I was going to ask that you post your information here to the forums in addition to your blog, but after reading your blog, I realized that your quantity of information would quickly overwhelm the forum!  You've got a LOT of information in there, and much of it seems very 'medical' (which is not to say that it's hard to understand, but it takes a lot of attention and thought.)
Instead, I'd like to ask that you post here items that you deem 'important' to all of us, with links to your blog.
Again, Welcome to the group, and I hope to hear much more from you and your research.
Steve
Thanks Steve, I'm seeking guidance from Hawk on how best to participate. I'm committed to the blogging/open source/widipedia model of knowledge building, but I have enormous respect for what Hawk and the management team  has built here. There's some tension between the community model and the open model and I'm going to defer to Hawk as to how he wants to manage that.

BTW, I don't know how spell my own pseudonym! It's "Hortenis" but I am prone to mis-spellling it.

Hawk

First, no offense but i see a 6" worm called Hortenis and I also see a modification of sHORTpENIS and the origin of your name distracts me.  ;)  Is it either or?

Hortenis,

I have no concern for models only rule #8 under "Read This First".  I also felt the need to resolve undisclosed issues that are part of good forum management, thus the PM discussions.

Feel free to contribute to the dialog under any appropriate topic.  While this may not be the place, i am curious about Wikipedia since it appears anyone can edit it.  In fact I have edited the entry and there is an MD on the forum (Tim) that has extensively edited the Peyronies Disease entry on Wikipedia

I assume this means a prankster can edit it.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

hortensis, Welcome to our group!  I really wish we had more physicians interacting with us on this forum.  I believe that there is a lot we can all learn from you all, given your professional training and expertise.  And there might be some things that you can learn from us as well.  Thank you also for the great work you are doing on your site by building up a repository of useful research based information.

I have to tell you that I, for one, am extremely optimistic about Peyronies for a number of reasons:

1) Finally, Peyronies is getting attention that it has long lacked.  Many urologists who have long operated in the dark are finally taking an interest in treating this disease with cutting edge approaches.  And, equally important, many of the myths about Peyronies that have been sort of the common wisdom in the medical community are finally biting the dust.

2) If Peyronies and other forms of fibrosis share a large degree of common pathology, which I believe they do, discoveries regarding other fibrotic diseases will open new doors for Peyronies treatment.

3) I believe that over time the value of Pentoxifylline will become more apparent in the treatment of Peyronies.  I believe that Pentoxifylline is currently underutilized by uros and that too many doctors and patients are giving up on it far too soon.  Peyronies is a tenacious disease and a just few months of treatment is not going to do the job.

4) Through a combination of diet, exercise, and targeted supplements, I have personally defeated three major afflictions outright in my own life within the last several years.  I credit this accomplishment to the mercy of God, all the great research out there shining light in every direction with easy access to it via the Internet and last but not least an extremely caring and open minded personal physician willing to put up with an often difficult to deal with patient not hesitant to ask questions and not always willing to accept simple answers.  This includes heart palpitations to the point of being debilitating with a five year history - now 100% gone for over two years WITHOUT medication or surgery, hypertension with a history of nearly 20 years and recently treated with three prescription meds - now 100% gone for nearly four months, and chronic urinary tract infections due to inability to drain bladder completely - now 100% gone for nearly two years WITHOUT medication or surgery.  (I am now free of ALL prescription medications  ;D ).  If there are combinations of life style changes and supplements out there that can accomplish these things, there are certainly likely to be things, as yet undiscovered, that can halt or even reverse fibrosis.  I am convinced of that and equally convinced that they will be found within the next few years.

I am nearly 60 years old, but if I were a young person today with Peyronies, I would be very thankful to be living in a time when there is much more hope than ever before that this thing will be forever laid to rest and the people currently afflicted with it will be finally free from its curse.

Once again, thanks for joining us!  I now have your site bookmarked and will be a frequent visitor.  - George

kenm

I go this forum but post quite infrequently.  I too am a md and not a cardiologist.  I have been quite discouraged by the delay in the Auxilium trials but I did call them yesterday and they are saying they are going to start phase 2B trials for Peyronies Disease in the 4th quarter and restart the phase 3 trials for dupentryn's (sic) in the 4th quarter as well.  I can relate  an anecdote that happened to me recently.  I was put on a short course of prednisone for an unrelated condition and quickly found a change in my erectile proclivity and it also seemed like I regained a little of my lost elasctisity.  I noticed it almost immediately.

mark501

Kenm, Thanks for the info from Auxillium.  They are going to have an audio webcast on Wed. July 11th at 3:30pm CDT.  Mark

j

They took advantage of this little break in the trials to start selling $50 million worth of new shares.

http://biz.yahoo.com/prnews/070613/nyw081.html?.v=101


Liam

QuoteI too am a md and not a cardiologist.

I think I missed something.  Why did you include "not a cardiologist"?

I, too, noticed what I perceived as an improvement while on prednisone.

On April 14th I said:
QuoteI think its a good idea to treat the trauma and inflamation, though.  Can't hurt.

I have been treating a back injury with some strong nsaids and prednisone (finished that now).  My Peyronies Disease which had been painful seems to have "calmed down" as a side benefit.  And, erections seem better (no objctive measure, though)  .

The pain has not returned (as it was before the pred.).  The immediate improvement in ED was short lived.  
"I don't ask why patients lie, I just assume they all do."
House

George999

While it certainly makes sense that Prednisone would be helpful, I don't know whether I would want to pay the price long term.  As one who has taken Prednisone before, I can personally attest to the fact that it is strong medicine that can do strange things to one's body, especially if administered over a long period of time.  There are, in my non-professional opinion, other non-steroidal anti-inflammatory approaches out there that can be just as effective.  - George

Liam

It is definitely not a long term drug for Peyronies Disease.  Notice, too, I said "perceived".  Relieving other pain could have contributed to all the benefits listed.  My account should not be taken for anything more than an interesting anecdote.
"I don't ask why patients lie, I just assume they all do."
House

meanmrmustard

today i was prescribed a drug called effortil (etilefrinhydrochlorid) for my cronic low blood pressure (90-60). it works via "arterial vasoconstriction". can it have any negative effect on my cronic ED and are there risks involved taking it in combination with VitE and L-Arginine?
24 yrs, ED for 5 years after bending erection sharply, getting worse and worse, no diagnosis, no Peyronies Disease

Liam

What did your doc say when you asked him?
"I don't ask why patients lie, I just assume they all do."
House

ThisSux

I went back to Dr. Mulhall today after 2 years of living with symptoms of Peyronies described below (including pain during/after intercourse).
There is good news and bad news.

The good news is that he said one area of tough tissue felt better.
The bad news is that he thinks he has identified a plaque that was not there previously.
I told him I still did not have any curvature and he seemed a bit shocked.

I did not get an ultrasound done the last time I saw him, but I will have one done in 2 weeks (for over $800!!!). My insurance will not cover it but I dont care if I go broke saving my penis!!

He did not want to prescribe anything right now but said he would possibly prescribe colchicine/pentox based on the ultrasound.


Quote from: ThisSux on April 14, 2007, 09:15:49 PM
After an injury 2 years ago from sexual activity while not fully erect (after already going twice... :P), I developed 3 hard lines running from the base to the top as well. They are thicker towards the base of the shaft and run straight down to the glans (and get thinner as they go). I have some shrinkage where they are their thickest and also unfortunately daily pain. They feel almost like tendons.

Other symptom is that penis seems much more succeptible to injury.

I went to Dr. Mulhall in NY about 1.5 years ago and he told me "I dont detect any plaques but you do have longitudinal ridges that some people think are indicative of peyronies...I am not so convinced" he also said that I dont have "typical" peyronies disease. I suspect he might change his opinion if I saw him again.

Right now I am just taking 400 IU E, 2 grams ALCAR and 3 grams Arginine  daily.

outsider

Hello.  As the subject says, I'm new to all of this.  You guys seem very knowledgeable, perhaps more so than the urologist I recently saw.  So, here's my story.

One night, I had too much free time, and the internet offered lots of porn.  It felt great, mostly because I was doing something other than pining over my recent ex-girlfriend.  Long story short, the next morning when I woke up, my penis was swollen, and even more alarming, there were two indented rings towards the middle, and the rings ran horizontally.  The following day I went to see my urologist.  The swelling had subsided, but I was still concerned.  In about twenty seconds, he looked me over and said nothing was wrong, adding that the swelling would naturally go down.  Less than a week later, I noticed that, where the indented rings had been, there were two hard lumps, or more precisely, two hard bands of tissue just under the skin.  They can be seen and felt when erected.  

Up-to-data:  It's been exactly eleven days since the initial swelling/inflammation.  The bands are still there.   I've had no nocturnal erections that I recall.  I'm having difficulty achieving an erection.  When I do, some are EXTREMELY weak, and some are normal strong erections.  It feels numb, lifeless.  However, there's no pain.  And there's no curvature, when fully erect.  I've scheduled an appointment with Dr. Edward Kim, listed on peyroniesassoc.org.  I'm currently taking in one day: two Clariton 10 mg , two Alleve, 3 grams of cheap L Arginine, 2000 I.U. of cheap vitamin E, and just started Horny Goat Weed.

I have several questions.  It's only been ELEVEN days!!!  Is there anything else I should be doing?  In your opinion Liam, George, Hawk, Old Man, etc., what would you do in this early stage?




Liam

TS,

What can you do differently by identifying plaque with an ultrasound?  Take that $800 and go on a vacation.

If your insurance paid, go for it.  But, the results, either way, will not change what happens to you.

WELCOME Outsider,


According to my reading, most trauma to the penis resolves itself and does not become Peyronies Disease.  The symptoms you describe are consistent with trauma.  I don't blame you for worrying.  I also think its a good idea to follow up with Dr. Kim.  Peyronies Disease is not a "sudden onset" condition.  Some may link their Peyronies Disease to a trauma.  However, the Peyronies Disease was a result of a faulty healing process over a relatively long(er) period of time.  Eleven days, more than likely, is not enough time.  Google some of these terms with penis: trauma, injury, phlebitis, lymphangiosclerosis, thrombosis and others that come to mind.
 
Quoteor more precisely, two hard bands of tissue just under the skin

To me, UNTRAINED that I am, this sounds like an inflammation of a vein or lymph vessel.  Again, I DON"T KNOW!!!

Anti-inflammatory meds sound resonable until you see the doc.


I am not qualified to make a diagnosis.  I just want  you to consider the odds against having Peyronies Disease.  :)


Good Luck,

Liam
"I don't ask why patients lie, I just assume they all do."
House

ThisSux

My advice is to keep the blood flowing but be gentle. In my opinion (and this is not medical advice, but everything I have read points to it), you need to make sure you have erections to prevent collagen buildup.

Quote from: outsider on July 18, 2007, 02:28:24 AM
I have several questions.  It's only been ELEVEN days!!!  Is there anything else I should be doing?  In your opinion Liam, George, Hawk, Old Man, etc., what would you do in this early stage?





George999

outsider, sounds like you are doing a lot of the right things at this point.  I really wouldn't worry about the quality of the erections, what you are experiencing is normal following trauma.  Hopefully Dr. Kim will be of help and perhaps prescribe some Pentox, personally I think it is better to apply Pentox sooner rather than later, but I am not a doctor.  Other than that, at this point, all you can do is wait and see what happens from here.  The most important thing is to try to put the brakes on the inflammation (non-inflammatory fats and all of that).  Also, and you really don't need me to tell you this, try to stay away from the porn.  For all of the pleasure it imparts, it is dangerous in more ways than one and it is very addictive.  Don't let it gain control over your life.  I wish you the best!  - George

PainIsGrowth

Hey Outsider,
I think you are on the right track about seeing a specialist.  I would definately ask Dr. Kim for a pentox prescription and a prescription for Cialis or Levitra.  PDE5 inhibitors used long term have been shown to reverese corporeal fibrosis and venous leak in rat studies.  
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17287493&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
goodluck man
stay away from masturbating for the time being

meanmrmustard

Quote from: Liam on July 17, 2007, 01:24:45 PM
What did your doc say when you asked him?
only said I shouldn't use PDE5 inhibitors when taking the anti hypotension pill, just wanted to ask if anyone knew more about it

outsider: this all sounds so damn familiar, had an accident with similar effects 5 years ago, kept worsening since then, doctors say they can't feel nothing strange, but they never really take much time - i do feel sth that seems like hard veins. well I've told this story before, the only useful thing i can contribute is what has given me back night time erections: l-arginine + grapefruit seed extract (=a natural antibiotic). i've only discovered that a few weeks ago, since then I almost always woke up with an erection, something that hardly ever happened in the past 5 years. I wish you the best, hope you have more luck than i have had so far.
24 yrs, ED for 5 years after bending erection sharply, getting worse and worse, no diagnosis, no Peyronies Disease