Progression of Peyronie's Disease

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Joshua

Discuss progression of symptoms from the very first sign of Peyronies Disease to calcified plaque. This includes curvature, pain and other manifestations including improvement of these conditions. Include time frames and other relevant information.

Old Forum

Posted: Sun Jun 26, 2005 2:56 pm      

Joshua
Moderator


I would like to hear from men that Peyronies Disease symptoms started with one single bb sized/shaped ball of plaque.

My Peyronies Disease started like this and I have noticed others have as well. I think the type of Peyronies Disease that starts like this has a pattern. We may can learn from each other what the pattern is.

I think this Peyronies Disease is more likely to improve.



Old Forum

Posted: Mon Jun 27, 2005 8:15 am      

kevin
PDPDF Newbie

My first sign was like yours: a small bead in the very center. I could not press far inside to detect how hard it might have been. I postponed having it checked out since there were no other symptoms. The only thing bad that I imagined it could be was a kidney stone passing through, or perhaps cancer. Just a few weeks later the curve appeared all of a sudden.

It later changed to a bend (near the original bead site) of nearly 90 degrees, around the same time that I was getting the second or third of my bi-weekly Verapamil injections. (I'm now at number 8 with more small plaque spots newly discovered which are further back toward the groin than before.) You've mentioned that you think this variety of Peyronies Disease has a better outcome than others, such as the ones from an identified injury. I hope you are right but I don't see any evidence of that. Why do think so?



Old Forum

Posted: Mon Jun 27, 2005 12:24 pm      

Joshua

Kevin,
why could you not press hard to detect it? Did you only notice it with an erection. I can't notice mine with erection.

I SUSPECT that this type of Peyronies Disease is more likely to improve ONLY because mine did. That could mean nothing. My bend was not as angled as yours.

How far are you into your Peyronies Disease?

Joshua



Old Forum

Posted: Mon Jun 27, 2005 4:55 pm      

kevin

Joshua:
It wasn't that I could not detect it. I just couldn't tell if it was a hard thing or not because it was very small and buried under layers of normal tissue. I suppose if I thought it was important enough at the time, I could have pressed as hard as I could and found out that way. But that would have seemed a harmful thing to do in its own right. Again, it seemed innocuous and temporary to me (until later, of course), so it didn't occur to me to try anything like that in particular.

Mine, too, was detectable then only when flaccid. That first sign was early in the fall of last year. The curve came up suddenly in the first week of November and I finally got to see a Uro in January. The 12 Injections began at the very end of that month and continue still. (There was a one month hiatus after #5.)

Was your curve upward and did it get worse before it got better? What was it at its worst, and how is it now? Most importantly, what do you think accounted for the improvement (and what was the timeframe, compared to mine?)



Old Forum

Posted: Mon Jun 27, 2005 5:30 pm      

Joshua


Yes, it was and still is an upward curve. It got very bad then the pain went away and it starting clearing. I give more details under the meet the members section. I think what helped improve my condition was and is once the pain and inflamation stage was gone I worked on blood flow and erection strength. I think that is very important. I used high doses of good arginine (NOS) to build very hard erections. I kept having sex (almost nightly and sometimes twice a day) I massaged the plaque areas. I pulled my penis in opposite direction of the curve when I was in the shower or bath. I think the erections and blood flow did the most good.



Old Forum

Posted: Tue Jun 28, 2005 5:18 am      


It's dcaptain. Joshua, I'm sorry, I'm still slow on a few of the finer points of Peyronies Disease. What's good arginine? Also, did you note any palpable change in the bb-type plaque in the center?



Old Forum

Posted: Wed Jun 29, 2005 2:17 am      

Joshua


Anonymous wrote:
It's dcaptain. Joshua, I'm sorry, I'm still slow on a few of the finer points of Peyronies Disease. What's good arginine? Also, did you note any palpable change in the bb-type plaque in the center?


Quality L-Arginine is an arginine blend with and it must have Alpha-ketoglutrate (akg) in a controlled release form. Wal-Mart sells it as a nitrous Oxide enhancer in the vitamin section for the best price around (even on the net).

No, I did not note a palpable change in the center bb or almost pea sized plaque. It came first, was hard as a rock, and was the last piece to go.
I then thought it was all over and a new one grew on my left side. That is where I am at. However, NOW there is no pain, no erection problems and curve has reduced.

I have not meaned to scare you! I have just been reporting what i went through. You may or may not ever follow the path my Peyronies Disease took!



Old Forum

Posted: Thu Jun 30, 2005 12:53 am      

dcaptain

Joshua, thanks for the info on the L-Arginine, I will add that to my list of things to try. Currently am only using Vit. E.

You said it was "the last piece to go," meaning that you got rid of it, I'd assume. That's great! But with this "going," do you have any idea of what happened to it? I mean, is there any outline or anything of where it was? (I realize that's a weird question and I guess I'm just curious.)

And you didn't scare me, although the bb-thing did! What freaked me out was that you said that basically within a few days of me finding it. Gotta admit that's a little coincidental. But good to know. Thanks.



Old Forum

Posted: Thu Jun 30, 2005 4:17 am      

Joshua


When the plaque lumps left I healed in most areas/ however, I have a small indention in one area where the largest piece was. I hope it fills back in with time. Good Luck with the Doc and please update us.



Old Forum

Posted: Tue Jul 05, 2005 9:46 am      

Hogfish

Mine started as one small pea sized nodule and then others developed over time. I am now experiencing a major dent on the side that runs a few inches like some of the shaft is missing. You guys have this? My original pea size in the middel and causing no problems is now gone but others keep going.

Someone above said they had verap injections. With whom and did it help?



Old Forum

Posted: Tue Jul 05, 2005 2:55 pm      

ANTONIO

Joshua, Does your research indicate Peyronies Disease development resulting from trauma is less likely to improve vs. spontaneous onset?



Old Forum

Posted: Thu Jul 07, 2005 12:03 am      

Joshua


ANTONIO wrote:
Joshua, Does your research indicate Peyronies Disease development resulting from trauma is less likely to improve vs. spontaneous onset?


It's just a theory. However, it seems that men that acquire Peyronies Disease spontaneously sometimes spontaneously improve. However, it seems that in cases that Peyronies Disease plaques have occurred from an injury (such as the famous, I heard it crack or snap) it seems that theses cases stay the same.

I also have noted that spontaneous reversal rarely occurs with older men.



Old Forum

Posted: Thu Jul 07, 2005 12:05 am      

Joshua


I have a question to all concerning your own Peyronies Disease progression. Have you noted a Peyronies Disease plaque growth or appearance of a plaque without pain before it appeared or grew  



Old Forum

Posted: Thu Jul 07, 2005 3:48 am      

Hawkman

I noticed a curve without pain, and an indentation followed by a string of tiny pearls with no more than very insignificant pain.



Old Forum

Posted: Thu Jul 07, 2005 4:54 am      

Joshua


Hawkman wrote:
I noticed a curve without pain, and an indentation followed by a string of tiny pearls with no more than very insignificant pain.


I had the same except with pain during intercourse before the onset of symptoms. It seems like the pain came while the nodules were forming/growing.



Old Forum

Posted: Thu Jul 07, 2005 3:18 pm      

Wizard

Joshua wrote:
ANTONIO wrote:
Joshua, Does your research indicate Peyronies Disease development resulting from trauma is less likely to improve vs. spontaneous onset?


It's just a theory. However, it seems that men that acquire Peyronies Disease spontaneously sometimes spontaneously improve. However, it seems that in cases that Peyronies Disease plaques have occurred from an injury (such as the famous, I heard it crack or snap) it seems that theses cases stay the same.

I also have noted that spontaneous reversal rarely occurs with older men.


Joshua,

Do you think that peyronie's does spontaneously improve? Besides what is said medically about that subject. It would seem that even the medical community cannot answer that question for themselves. I know it is discussed, but I know of no study to make that assumption. Without knowing the true cause of peyronie's it is all simply conjecture on all of our parts.
Also, in reference to the (snap or crack), there is such a thing called penile fracture. Penile fracture does not always cause peyronie's and in the cases which I have read about can and does resolve itself on its own. Not to minimize the fact that men do get peyronie's from penile fracture.

I offer this thought. Peyronie's should be considered an auto-immune issue. The 2 words I keep seeing over and over in all my studies are: collagen and vascular. Up until the late 80's Auto Immune Diseases were called "Collagen Vascular Diseases." This is where the body literally turns upon itself and begins to destroy it via antibodies called Anti-nuclear Antibodies or ANA. Men with peyronie's should get the blood workup for auto immune diseases. This would include ANA's, C reactive protein, ESR and a whole bunch of other tests which my memory is failing me to recall at this time.

Sclerosing is typical of an Auto-Immune process such as with Scleroderma and Interstitial Cystitis. IC causes the bladder lining to become sclerosed or hard, petrified, loses elasticity (ie collagen) and becomes SCARRED. It is unable to stretch to accommodate urine. The violent pain and spasms those who have this condition experience come from the bladder trying to stretch the hard as concrete tissue to expand when urine is emptied into it from the kidneys. Symptoms sound familiar? They do for me.

I look forward to further input.

Mr. Wizard



Old Forum

Posted: Thu Jul 07, 2005 3:42 pm      

Joshua


Yes, I absolutely know peyronie's can spontaneously improve. My own condition was severe at one stage and improved by 75% in less than a month. I had huge plaques, string of pearls down the middle and mild ED all just quickly improve in a months time.

I agree with you that peyronie's could be an auto immune issue. Your points make sense. I will research that point more on the net. I obviously know much less about that issue than you. Thanks for your interesting and intelligent post.



Old Forum

Posted: Thu Jul 07, 2005 3:54 pm      

ANTONIO

Joshua wrote:
I have a question to all concerning your own Peyronies Disease progression. Have you noted a Peyronies Disease plaque growth or appearance of a plaque without pain before it appeared or grew  


Joshua;
Thanks for your theory on reversal. I was afraid I was going to hear that but I appreciate the input based on your research.

Regarding Plaque/no pain,

This has been my experience for the past six months. Slight pain at time of injury. With the excepton of pain one time during sex, 30 days post trauma. In this episode it was a general soreness as opposed to a specific area with sharp/dull pain. I even believe that the one time pain episode may have been hypersensitivity dueto my awareness of Peyronies Disease. Aside from this, nothing.

Antonio



Old Forum

Posted: Fri Jul 08, 2005 1:17 am      

Guest

Hey guys, I have a question about your flaccid states, specifically about the glans. Here goes:

The glans is generally a little more red/purple than the rest of the penis. Right? Right. However, I've begun to notice that the underside of the glans is now a lot more purple. Actually, it's almost blue. I absolutely know that there's a circulatory aspect to what's going on with me, but has anyone else experienced this? Is the underside of your glans a different shade/color? I'm trying to differentiate between what might be a discoloration and a general variance in color.

DCaptain



Old Forum

Posted: Sun Jul 10, 2005 9:10 pm      

dcaptain

Anyone have any thoughts on this? Hope everyone is having a good weekend.

Site looks great, Hawk!



Old Forum

Posted: Sun Jul 10, 2005 11:17 pm      

Hawkman


dcaptain wrote:

I've begun to notice that the underside of the glans is now a lot more purple. Actually, it's almost blue. I absolutely know that there's a circulatory aspect to what's going on with me, but has anyone else experienced this? Is the underside of your glans a different shade/color?
DCaptain


The answer here is no. Can't help you with this one. Good luck



Old Forum

Posted: Wed Jul 20, 2005 3:35 am      

dcaptain


Josh, to answer your question about pain, I've had very little pain recently. I *had* pain well before (many months) before I noted what is now the bb-sized lump in the middle, but this pain was more along the sides at the base. I have some pain here or there from time to time, but nothing that's consistent or in any sort of pattern. I have no pain with erection. Hope that helps.

dcaptain



Old Forum

Posted: Mon Aug 08, 2005 11:52 pm      

cdm

Ok so if I get past the 18 month mark and my condition hasnt worsened(or improved) does that mean it stays as it is,or can it still worsen,Id like to hear from guys whove had this for over 18 mnths and if any changes were experienced.



Old Forum

Posted: Tue Aug 09, 2005 12:28 am      

j

After the first few months, mine didn't get any worse, and it's now been about 2 years. I have no confidence that it will stay this way, though. I also have Dupuytren's and have seen its progression stop and start over the years.



Old Forum

Posted: Tue Aug 09, 2005 4:44 am      

Rzz


Hey guys,
Didn't know if you knew, but there is now a relatively simple procedure that can bring MAJOR relief to those with Dupuytren's Contracture. It's called NA or Needle Atrophy. It's performed in the doctors office and takes between 30min-1hr to do. It does not help with the nodules in the hand but it can greatly reduce the contracture or bending of the finger(s). That's the good news. The bad news is it's only performed by 4 doctors in the US and 1 in Canada. It reduces the contracture by as much as 60%-95% with the avg being about 85%. If anybody is interested I can get the names of the doctors for you. 2 are in Florida at the same location. 1 is in NJ and the other is in Tenn. The doctor in Canada is in Toronto. I'm going to have it done by Dr. Pess located in NJ in late September. By the way these are legitimate doctors. They are all Board Certified Micro-Hand Surgeons. Trust me, it's for real. I've research the hell out of it and it is legit. Within 10 years all hand surgeons will practice the procedure for treating DC.



Old Forum

Posted: Wed Aug 10, 2005 3:11 am      

dcaptain

Hey guys,

Hawkman was kind enough to work with me and post the poll question for me. I have been wondering about how long it takes people with curvature or a bend to get to a maximum, stable angle of curvature. I know that it can improve over time, and that some guys have reported it improving and then worsening again. But what I'm looking for, if you are willing to share, is how long it took from the onset of any sort of curvature to reach a stable, maximum angle (ie, it reached an angle that it did not progress past, say for several months.) It may have improved, but I'm wondering how long it took from onset of a curve to a stable curve, just to get a better sense of how long this takes or can take.

Thanks guys for your votes on this. I know this came up in the forum within the last few days, so I know it's on at least a few folks' minds (mine included!). Hopefully we'll learn something.

dcaptain



Old Forum

Posted: Sun Aug 14, 2005 12:42 am      

cdm


Do any of you smoke cigarettes,and do you think it can worsen Peyronies Disease?



Old Forum

Posted: Sun Aug 14, 2005 12:53 am      

Guest

Check this site:
   
http://thescooponsmoking.org/xhtml/effects/peyroniesDisease.php

And this link I found on this very forum by searching "smoking"

Smoking & Peyronies Disease
« Reply #1 on: August 20, 2005, 08:15:15 AM »
https://www.peyroniesforum.net/index.php?topic=54.msg163#msg163.html

Thanks, dcaptain they both work now.



Old Forum

Posted: Sun Aug 14, 2005 1:01 am      

dcaptain


Good question guys. First, Guest, the second link I don't think worked. Your first link worked but it the word "site" is in the link itself so clicking on it won't work either. If you wanted to fix.

Second, I used to smoke. I don't doubt that it could contribute to it - I've read with shock and amazement the amount of terribly negative things that smoking does to one's body, in systems you wouldn't think would be affected.



Old Forum

Posted: Tue Aug 16, 2005 1:04 am      

Hawkman

At the top of this thread is a great poll by dcaptain. So far only 2 people voted. I have to think that more than 2 members currently have, or have had a stabilized curve or bend.

Come on guys we are not asking for pictures of it with your name on them, just that you share your first hand knowledge about Peyronies Disease.  

PS: I am not stabilized so I can't vote.



Old Forum

Posted: Thu Aug 18, 2005 6:49 am      

Michael


Good Heavens! I'm only about 4 months from lift-off... and now you're telling me it can get WORSE? Gulp! Guess I'd better not vote, either, and I'd better start paying closer attention to my willy: I haven't been encouraging him because I don't want to damage him further. I apparently have much to learn...



Old Forum

Posted: Fri Aug 19, 2005 7:30 am      

Rzz


As I've said before, curvature was never really a problem with my Peyronies Disease, my problem was and is erection quality. I did have some curvature, but very little. It did not effect me that much. I'd say of the little curvature I had it stabilized about 10 months or so after I first noticed a it. NOTE: the nodule I first noticed, the one that I went to the doctor about, resolved itself about 15 months later. Unfortunetely for me, a second nodule formed in that time period and it has not resolved itself and most likely will not since it's now been almost 6 years since it formed. It's the one that caused some curvature. The first one that resolved itself caused no curvature, but did cause some shrinkage.



Old Forum

Posted: Fri Aug 19, 2005 10:40 pm      

kbmw


When you guys use the term "improvement" you should specify what you mean. I once had a large nodule but it has reduced significantly. Is that improvement? Not for me. My major complaint is an absolute 90-degree curve with erection. That takes me out of the game. So please define what you mean when you use the term improvement. The only way I could define improvement would be to have curvature reduction of substantial proportion. Nodule reduction was meaningless.



nick

My condition came on after an injury. So in my case I got the curve first. For about 6 months it began to worsen (the curve). After about 6 months I bagan to notice a small nodule about the size of a BB. By about 6 months later Had 3 about the size of a pea. You could see them. The three nodules were conected by a thick band. It was like some bizare F'd up jewelery from hell. After almost 3 years. The nodules are smaller, one is almost gone and the band is more narrow. The pain is gone. The curve is as bad as ever at around 80 degrees.  

dcaptain

Gentlemen,

Hawk has been kind enough to transfer a poll that I (with Hawk's generous help) worked on back at the old forum.  If any members are here who voted on the old poll, the votes did not transfer on that poll - can you please duplicate your answer here?  THANK YOU.

Also, if you haven't voted yet but fit the description, please vote!  I'm hoping to get a better sense of how long it can take for curvature to stabilize (ie, stop the trend of deviation from "straight").  We've had some interesting answers back at the old forum.  Please repeat your votes here - and new guys, please vote if this applies to you!

Thank you, gentlemen.  

Best,
dcaptain

Barry

dCaptain,

For your consideration and the accuracy of your poll please take into account the following: 1. The general consensus that we will stabilize is 12-18 months.
                 2. The word "Stabilize" does not really have a clear definition when speaking of Peyronies Disease.

The two above mentioned are conjecture and are not factual. They fill a necessary void on which the medical community can base a statement. 12-18 months sets the parameters    
used by urologists to deem a Peyronies Disease patient as being "stable". A stable Peyronies Disease patient however is not someone who has passed the 18 month maximum time limit that urologists affirm. So we must ask ourselves, when then am I considered stable? The answer is NEVER. Can "never" be proven as fact? No! Can it be proven as more than likely? Yes!

I have had Peyronies Disease for 9 plus years and have never been stable. The curvature of my unit has changed 5 times and is at it's worst now at 80 degrees upward. I remained sted fast at 60 degrees for about a year and one half then as if over night, Bingo...80 degrees. dCaptain, as a reader and poster of every Peyronies Disease forum in existence for over six years and having thousands of research hours I can say with fact that I have read the stories of hundreds of men who share the same story as I. We have not even mentioned those men who were considered stable and went on to have surgery, only to have Peyronies Disease return or it was not really gone in the first place.

Please understand that I have no reason to discredit your poll, which is not my intention.
It is however my desire to lend some fact to the poll in my effort to help you foresee a greater degree of accuracy in the vote.

To the members I say as does Hawk, participate in these polls for Gods sake. As of now this poll has < less then a 5 % member contribution, which is pretty sad. Get off your asses guys and stand up and be counted. The Peyronies Disease Coalition has determined that in great part the reason why reasonable, credible and accurate information about Peyronies Disease doesn't exist is because the vast majority of men who have it will not talk about it. I say again friends, stand up and be counted!!!!!.

Good luck with your poll dCaptain and I hope the numbers go up.

Regards,
Barry      

 

Hawk

Barry,

I agree with your comments and was thinking along those lines when I saw you log in and post.  I had just re-read the poll, and checked the vote for the umpteenth time.  I thought of our recent conversation and wondered if it was your vote in the ">60 months" category.  

I have hesitated to vote because I suspect my Peyronies Disease is still active.  I still have some very slight pain with pressure such as when I pull up a pair of jeans too quickly in just the wrong way.  I really never had even moderate pain with my Peyronies Disease. I have had a few nodules significantly reduce in size, but hardened.  My downward curve has also seemed to reduce but my indentation at the base is still there.  

I too wonder how many of us that vote "3 to 6 months" will find that we were wrong 2 years from now.  Dcaptain did submit a much more detailed poll question, but we found that the software makes you refine the question down to the size of this poll (about 4 lines in a posting/edit box, which is actually 2 lines on the actual forum).  I think a good question would be a follow-up poll that asks "have you ever thought you had stabilized (by remaining the same or improving for a year or more) only to have Peyronies Disease progress again?

I join with Barry in encouraging all members whose Peyronies Disease has appeared to stabilize to participate in the poll at the top of this topic.  Whether you post or not, we cannot be hold-outs that refuse to contribute to the information that so many others need.  I hope that the lack of participation was a failure to notice the poll, which is why I put it in our forum news.  Since then we have picked up 4 votes in 12 hours so I am confident that was the case.  Don't let your fellow members down.

Clearly, we don't really know if we stabilized until after the fact.  We cannot even be sure if later flare-ups mean the disease was never stable of if it is a separate bout of Peyronies Disease.  It would be difficult to even define the difference in these two.  

For the purpose of our poll, a hope of stabilization would be marked by a period of no pain, and no increase of curvature for 6 months or more, or a period of very clear improvement.  After that happens, we can then look back and report on how long it was from the time the curve first started until it got to its maximum bend.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Larry H

In the 6 years that I have had Peyronies Disease the plaque has continued to enlarge, moving from the base of the glans to the pubic area. The top of my shaft is now one large sheet of plaque. The bend has not changed much in the last year, but length and girth continue to decrease. The only positive is I have never had any problem with erections, as unsightly as they now are, so blood flow remains good.

I question if the word "stabilizie" really applies to Peyronies Disease. I know that urologists use the tern a lot, but after 5 years of research into Peyronies Disease the thing that impresses me the most about urologists and Peyronies Disease is how little they know about Peyronies Disease. That is not ment to be a put down to urologists, if anything it's an indictment of the Peyronies Disease patient for continued concealment of their disease. I know the reasons are good, but the fact remains that until the majority of men with Peyronies Disease come forward to be counted, the ture number of men with Peyronies Disease will never be known.

If I had to wager on how many men in the US have Peyronies Disease I would put the number at 14,000,000. That's about 10% of the male population and a strong case can be made for that number. If the pharmaceutical companys thought they had a market of 14 million people for a treatment or drug that really helped the condition they would be working 24/7 with research.

Gentlemen, what we seek is in the numbers, it's that simple. If I had the chance to go on Oprah, or Dr. Phil's show and discuss Peyronies Disease I would do it in a second, and I know of a couple of others who would join me. The people that have this disease must be the ones to inform the uninformed. We are the ones that know of the devastation and destructive nature of Peyronie's. We are the ones that know there is nothing humorous about a bent penis. I would go on TV to tell of my condition not because I'm some kook who wants to talk sex on TV, to be honest I would rather keep it private. I would do it because I know in my heart that until Peyronies Disease gains public awareness, and the real numbers are known, the disease is going to continue to flounder as a little known oddity that is thought to be very rare.

My Best,

Larry H


Old Man

dcaptain:
I agree withe both Hawk and Barry about the fact that Peyronies Disease probably never "stabilizes". As you probably know by now that I first developed Peyronies Disease at the age of 24, and know the rest of the story from my posts on the old forum and here.

Since it first attached itself to me, it has come and gone about 4 or 5 times during the past 52 years. Currently, I can state that my Peyronies Disease is in what I call an "arrested state". I do have one small indentation on the left side of the shaft where the last nodule/plaque was located and is now gone. Basically, I have no nodules/plaque or curve at the moment.

So, bottom line for me at least, is that Peyronies Disease only goes into an arrested state and can come back at any time for whatever reason no one seems to know.
This is my considered opinion based on my personal experience. It may or may not be the input you desire, but this is how it worked for me.

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

j

I agree with Old Man. It's just like Dupuytren's Contracture - it starts and stops for unkown reasons, but never really stabilizes. I also question whether  Peyronies Disease ever really resolves spontaneously, as is often claimed by MDs.

While I have nothing against urologists or MDs in general,  my personal conclusion is that other than surgery, urologists have nothing to offer with regard to Peyronies Disease.  You can go to several urologists and get completely different points of view on cause, prognosis and treatment. And all seem to be based on incomplete or incorrect information.

No one knows what causes it, what will happen to you in the future, or how to treat it. In fact I think the urologists know less about it than hand surgeons who see Dupuytren's contracture every day, and have a bigger base of objective facts to draw conclusions from.  

When I first went to a hand surgeon about 8 years ago he presented it to me quite simply: this is a disease that affects 3 parts of the body, and it can cause your penis to get bent. It doesn't get better on its own and there are no treatments other than surgery.  There was no talk of stabilization, micro-trauma, scarring, vitamin E, Colchicine, Verapamil, spontaneous resolution, or 18 months of wait-and-see.  The disease is what it is, everything has been tried, nothing worked.  He also made it  clear that even after surgery to remove the bad tissue, it often comes back.

And so I had the surgery.  And although I didn't have Peyronies Disease at the time, everything he told me turned out to be correct.


dcaptain

Guys, thanks first and foremost for this discussion - it is highly instructive.  As a somewhat newby to Peyronies Disease (~7 mos) , my thoughts on it change as does my thinking as to whether or not this is something that will ever improve.  I know many of you guys have researched every piece of information available, have talked to 100s of guys, and have gone through years of struggling with this disease.  Your insight is absolutely and thoroughly invaluable.  Thanks too for resurrecting this poll and this discussion.

I guess I have to say that learning that for many guys it really never "stabilizes" is somewhat depressing, however I guess it does give me a better sense of what I'm in for over the long haul.  That being said, there have to be guys out there where the curve hasn't gotten worse over time, and that's what I'm really looking for in the poll.    Besides, for many of us, I guess we will never know if it's going to get worse or get better as years progress, so I guess what I'm asking is that for those guys for whom it *appears* as though things have stabilized, how long from onset did it take?  

I greatly appreciate all these votes - for those who haven't voted please chime in!

Best to all.  

dcaptain

bob

In my case, Peyronies Disease "appears" to have stabilized. The pain has just about disappeared as well.

Changing the topic a bit, I'd like to remind everyone that there is a "profiles/histories" thread on this site that would be really, really useful... but nobody has posted any additional info for quite awhile. This was something that was promised to us by the APDA site before it went "down for remodeling" back in June. It requires following a general "questionnaire" format, but you can add to it significantly. It's a useful tool that's been offered to us, so let's use it!

Hawk

Bob,

You inspiried me to update my history.  I encourage all to do so and if you have not posted a history, consider it to be both an introduction to your fellow members and your contribution of your "Peyronies Disease case file"  to help others.  Others use it to chart and face the possible course their own disease progression could take, to find another member that they can closely relate to,, understand your background when you post a point of view on a topic.  In time these will give us clear case histories on the progression of Peyronies Disease.  

It also prevents the need for repetition of our background information under every topic for the benefit of new members with questions.  They can get answers to many of their questions under "Our Histories"

Please be sure to read the first post since this is the most structured area of the forum.  Joshua and I will do anything to help you and make this work.

If your history was transfered to this forum by "Old Forum"  Cut and paste it to a new post and delete the "Old Forum" version so you can edit it and it will clearly show your member name.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

j

dcaptain (and others), please remember that I'm just one guy and that my sources of information include only my own case and what's on the web.  I could certainly be wrong about many things.

What's always been missing for me in this picture is communication from guys who have benefitted - and I mean really benefitted, as in "their lives got better" - from any of the therapies out there now. My urologist sworethat transdermal verapamil worked for many patients.  It's hard to believe that MDs like Levine are simply lying about verapamil injections.  But years have gone by and I have yet to see a single credible, first-hand testimonial for a real success with either of these therapies.  

My urologist claimed that guys who were cured simply moved on and didn't bother with these web sites.  I can believe that up to a point. But I've seen many posts from guys who were just started on Colchicine, or in the process of getting verapamil injections, and as far as I know, not a single one has ever come back to say "wow. I'm cured".  Over about 5 years there have been a couple of vague, one-time posts from guys claiming some success with transdermal verapamil; but by now there must be hundreds if not thousands of patients who have tried it extensively, if my urologist's statements are any indication.  Where are these guys?

This is where I think the APDA could do some real good. Go to the conventions and press these urologists to cough up there numbers and compare experiences. Find Jerry Easterling (PDL Labs) after he makes his presentation and twist his arm for some substantiating data. And start to get the MDs on the same page as to whether any of these treatments really addresses the problem - not "yields a 10% improvement, on average, in 30% of cases, when treatment is started early enough", yada yada yada.






dcaptain

j, that's a point well taken.  i think that if there are guys out there who have significantly improved, then many (if not most) would naturally abandon web sites/forums/etc and move on.  i know two years ago i was having some problems where i would nearly faint, basically every day for two weeks.  the docs weren't sure what it was but had settled on hypoglycemia.  i spent the better part of a month on a hypoglycemia forum talking about it (assuming i had it), only to find out after a month that i didn't.  i couldn't even tell you what web site that was or where that forum is now.  

another issue is that of guys not having significant curvature enough to have it matter.  i think some guys may have a relatively small curve/indentation/whathaveyou, learn to live with it, and stop worrying about it.  as such, they never get to the point of posting, or just don't see it as worthwhile to continue discussing.

your point about *monitoring* is definitely one worth bringing to the attention of the urology community.  if we are going to talk about intelligent, objective, quantitative observation of the course of Peyronies Disease, then MEASURES need to be created.  medicine can't continue to rely on an "it's better" from a patient - there need (should be!) ways for urologists to objectively chart *how* much better or worse it's getting.  right?  that sounds like something for the AUA, definitely.

finally, the fact that we don't hear a lot from guys who have improved mean one thing - those of us here who do see improvement now or in the future should continue to post here, even if we improve to the point where we don't even think about Peyronies Disease anymore (wishful thinking?).   we owe it to other guys out there.  

Hawk

One note on interest.  I think Dcaptain and j both make very good points, but keep in mind that I am currently at the point that I think Peyronies Disease is a bummer because of loss of size and that it could flare up again, but no more than that.  I have improved to the point the ED is now my biggest issue.  With a VED I can have sex with my unit of reduced size with no problems.  Joshua, the other forum administrator has improved to the point of normal sex with no need for any special efforts to accommodate his greatly improved Peyronies Disease.

So both of your administrators have improved Peyronies Disease that enables them to function, yet we still post and put significant effort into building a good forum.  I am with j, that a significant number of those helped by a treatment would surely be back at least long enough to proclaim the treatment protocol, answer questions, and encourage others.

Dcaptain, keep in mind you did not have hypoglycemia.  That forum was pronounced irrelevant by your diagnoses or tests.  If you had found a cure, or located a life altering treatment, I know you well enough to know that you would have gone back to that site.  

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

j

Yes - objective measurement is another area where urologists could use some encouragement. That means either induced erections and photographs - as unpleasant as that may be - or some type of imaging, like ultrasound, that shows the real extent of the fibrotic tissue.  

Currently "Peyronie's Disease" is a catchall term for anything causing the penis to be bent to the extent that it's a problem.  In reality there are probably several things that might cause this and at some point in the future the term "Peyronie's Disease" maybe either takes on a more specific meaning or just becomes obsolete. So I don't think we all necessarily have the same underlying condition, or the same prognosis.  

So imagine your car has a crunched fender and you go to a body shop, pay a lot of money and when you pick up the car it's still crunched. The body man says "well, I was able to get a 15% improvement in that fender. Your case was unusual". You are not impressed, and ask to see some other examples of his work. Sorry, he says, I can't do that due to privacy considerations. You  look around his lot but there are no other cars there - he says the owners drive them away, out the back door, as soon as they're complete.  But he's fixed many bumpers and is "successfull" 80% of the time...


Hawk

j,

I will run that analogy through my head and expand on it for days.  Thanks for a thought provoking, entertaining post.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

kevin

I agree that if anyone who was posting on a Peyronies Disease forum found real success the person would at least post once about it before moving on.  The single biggest repository of Peyronies Disease posts that I know of is the BTC forum.  A couple of months ago I spent countless houirs looking through its threads to find such follow-up reports.  Positive ones were rare and even those usually involved only minor cases having slight improvements, or were limited to pain relief.   However, there actually were some successful surgeries reported (and failures as well) which we can safely assume were not mild Peyronies Disease cases or surgery would not have been undertaken.

Until someone digs up a number of real  testimonials about any of the previous treatments, I am ready to write off the claims of their value as being exaggerated and applicable to very few of us.   We are essentially back at square one.   As some of us explore the newest treatments, like heat or ultrasound, (or improve the data gathering on older ones such as VED),  we should all vow to not vanish immediatley if we get a substantial reversal.   Even one such parting post will last as long as the forum does and should turn up with a search no matter how old and buried it gets.