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.
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.
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?
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
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?)
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.
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?
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!
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.
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.
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?
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?
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.
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
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.
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.
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
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.
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
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
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!
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
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
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.
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.
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.
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
Posted: Sun Aug 14, 2005 12:42 am
cdm
Do any of you smoke cigarettes,and do you think it can worsen Peyronies Disease?
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.
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.
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.
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...
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.
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.
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.
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
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
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.
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
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
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.
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
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!
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.
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.
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.
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.
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...
j,
I will run that analogy through my head and expand on it for days. Thanks for a thought provoking, entertaining post.
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.
31 from asia. not sure if i have Peyronies Disease or not. But i have a bent erect
penis ever since i have memory of my erect penis in childhood.
it bent downward. when i read more about peyronie disease, i guessed
i have it. but i didn't do anything or saw a doctor, except tried
to correct it by flapping my penis up to belly during sleeping.
positioning it with underwear. hoping the pressure trousers exerted
during sleep erection will correct the curvature.
it happened about 7-8 years ago. Now, i find my erect penis slightly
less curved downward, but a bit curved to left side, it seems "the
plaque" (using Peyronies Disease terminology, and assuming it is Peyronies Disease) can migrate,
but not eliminated. When i feel the erect penis, i can feel the
scars on the shaft. Before 7-8 years ago,they are on the underneath,
now they are on the left side.
the reason i think it is not Peyronies Disease is that:
-ever since i have memory, it is curved. I can't recall any trama,
painful, inflamtion phase, development phase.
- i don't feel pain
-it doesn't get worse
the reason i think it IS Peyronies Disease is that:
-i can feel the scars by touch
-it is curved
-i can't maintain an erection for a long time, it goes soft easily,
though it get erect easily too. (i read Erectile dysfunction is
related to Peyronies Disease due to leakage from vein because of not enough
pressure to shut them up at tunnca near the plaque)
Is it chordee? but i see from the image of chordee from website,
mine doesn't look close to them.
- my penis is not long. about 4 inch in erect state. But it is very
thin. it is also not very rigid and hard and can't stay erect for
long period.
my guess is that i get Peyronies Disease since young age, affect my penis
development/ growth , so i get a thin, short curved penis, is this
possible?
--------------
--------------
i wonder if it is possible to post pic in this forum?
----------
Anyone can give me advice on
-if i am Peyronies Disease or Chordee or both not?
How does one measure an upward curve?
How much of an upward curve is normal?
These are two questions for which I have not been able to find a satisfactory answer.
I have taken pics... etc but I just dont know what is normal anymore. I can't remember what my penis was like before this whole debacle.
I have heard that some degree of upward curvature is normal... but can't seem to find a reference as to how much...
ANy ideas?
ThisSux:
There are probably several way ways one can measure the degree of curve upward, downward and side to side. The most common way is assuming that the penis is straight out and level with the floor from the body as a starting point, you measure the degrees based on a 360 degree circle, with the base of your penis being the reference point. Since you are looking down on your penis from above, you are seeing only 180 degrees of that circle. Use this to measure side to side curves, and use the same principle for the up and down curves by using it vertically in the same manner.
Now using these points as reference, any curve to right would only encompass 90 degrees from the center of your penis to the right. The same applies for a curve to left. Any curve up or down would be measured by the same method.
Example: Using any straight object such as a ruler and a degree measuring device (i.e. a protractor) hold them together on the top of your penis when it is erect and measure the approximate degree that your penis curves from the center point. The same would apply when measuring the upward and downward curve.
There are several sites on the web that deal with penises and their curves and how to measure them. Just do a google search, typing in for instance: How to measure curves of penises. It will bring up places you can tap into to get an idea from there.
Now, dealing with congenital curves. Most every male is born with some sort of curve whether or not it is up, down or from side to side. No doctor has ever been able to explain to me why this occurs. Most simply say that is the way the baby was carried in the womb or some sort of answer like that. Anyway, there are basically two curves that occur. One is called the "n" curve where the penis curves downward. Another is called the "u" curve where the penis curves upward. Both are considered as a congenital curve when they have been present all of a person's life from birth. If they develop very suddenly or after a traumatic event to the penis, then they would not be a congenital curve, but most likely would be associated with Peyronies Disease and especially if they are accompanied with a plaque and/or nodules, etc.
Hope that the above helps with your questions. If you have others, let them be known and any of us here would be glad to help. Take care.
Old Man
I am new to this.. but I want to be unfront.. and say I am the wife of a Peyronies Disease
suffer.. and I am hoping to learn as much as I can from this web sight..
my husband is 51 and very proud.. talking about it is just inpossable.. so we just pull away.. so i'm hoping you can tell me.. are there wives who have started a forurm? I've looked I want to help not hurt.. my husband. so i firgue the more i learn.. then i can go to him with the info and say lets try it.. good luck to you all.. and thank you for this web sight..
lost love
lostlove:
First, let me say that I am sorry that you and your husband have encountered the problem of Peyronies Disease. At age 51, you folks still have a life time of sexual activity left. Now, to do something about your husband's reluctance to talk about his problem. This is not a new question. For some reason, most men just do not want to talk to anyone about their inability to perform in the bedroom. They just clam up and go into a shell and won't talk to anyone about it. This leads to division in the household and problems begin to develop every day and becomes a major disaster in the marriage or union.
So, what does one do to get their mate to open up and talk. I really don't konw the solution to that question. I counsel with men all the time about this situation and have gotten no quick answer from any of them. It is somewhat like an alcoholic, the person affected has to first admit that they have a problem. Then and then only, will they take action to get help.
I strongly urge you to find some way to get another trusted male friend of his to help you. It must be done in such a manner that he doesn't suspect that you are involved at this time. Later, when he is beginning to realize that something must be done, then you can enter the picture again and maybe together work out a solution.
There are many women in the same situation that you find yourself at the moment. There is a topic on this forum dealing with how women cope with the problem of Peyronies Disease. Post there and you might find someone who has had this occur for them and what they did to overcome it.
I will be glad to help in any way possible. Just let this forum know what your desires are and we will do out best to help.
Sincerely yours,
Old Man
Quote from: lostlove on October 29, 2005, 02:27:54 AM
.. are there wives who have started a forurm? I've looked I want to help not hurt.. my husband. so i firgue the more i learn.. then i can go to him with the info and say lets try it..
Lostlove,
I am sure there is not a forum exclusively for women on the internet. In fact there are very few Peyronies Disease forums in general and you are on the most active forum out there. We welcome you and doubly do so because you are a woman and bring a needed perspective to the forum. We currently have about 10 women registered that I am aware of although most of them are not frequent posters. I hope that you will change that trend. We have a topic titled "Women Speak out".
I think you can gain some insight from other men and some of these women on what might be most supportive to your husband. As you know, not all men are alike. What works for one may not work for another. I personally would be upset and feel a bit betrayed if my wife went to a friend of mine about something so personal that I had chosen to keep private. I would however respond to a matter of fact, understanding attitude that invited me to "come experiment and see what works and what doesn't". I have said to my wife, " OK, this is not intended to be sex, this is an experiment and we kind of laughed it off. I feel the pressure to measure up to a certain standard, worry about needs etc. This freed us to just figure out the mechanics of what worked for us and what did not, without getting heavey into some steamy situation. Another thing I might also respond to, is coming and participating on this forum if my wife pointed it out for me. If you are concerned that he would be concerned that you posted here, just let me know at any point and time down the road, and I can help you edit or remove any of your posts.
Well wishes to you and your husband for many more happy years together.
In respone to a question about plaque, pain, and onset. Only after reading this forum have I learned about progression. I wonder why I can find no evidence of plaque and yet have an indentation on the top of my penis (reminds me of a spoon) also the loss of size. I wonder if the plaque is yet to come or what? Is it all going to get worse? It has not changed in 15 months except that the pain during erection is getting worse. Anyone out there with similar symptoms or progression?
Thanks, Lost2
Most owners of a functional penis know that the cavernos extends inside of the body for a considerable distance and that an erection can be apparent even in the area behind the scrotum. This brings up a question I have never heard discussed. Does this internal portion of the penis structure ever develop plaque with any of the classic symptom of pain, indents, curvature. etc.?
Hawk,
It is my understanding that there has been a deal of talk concerning Peyronies Disease associated with a radical prostatectomy. Some doctor's are seeing the Peyronies Disease develop as a result of this. It is my understanding that some of the Peyronies Disease is actually developing inside the body, or closer to the scrotum. Can't say for sure, but it was discussed at the most recent AUA.
Lazarini
In response to a question by hawk- have we had symptoms that present behind the scrotum, inside the body?
The very first pain that I became aware of was exactlly in that spot. I first went to a emergency hospital for the pain. I was sore just behind the scrotum, it felt like I was sitting on a golf ball. This is what I told my urologist and he went about all manner of exams and blood tests to rule out cancer of the prostate. Of course I told him about the problems with my penis i.e. loss of length, girth and bend, but I had never heard of Peyronies Disease up until then.
So after ruling everything else out he said that I had Peyronies Disease but I had the pain behind the scrotum for at least two months before the bend etc. As best as I can remember he never really looked for plaque or anything inside the body. I have some insurance problems now but when they are fixed I intend to ask about this. Since I have no evidence of plaque or nodules externally I still have to believe that something is causing the problem if not externally then internally. Thanks again for this forum, it helps so much not to feel alone. Lost2
For most of us with Peyronies Disease, plaque does indeed determine the curvature and you have none that you can detect anywhere around where the shape is affected. Also, many of us , if not most, don't remember any unusual trauma that caused it. So from your description of the onset (on another thread), your situation sounds like it may not be Peyronies Disease after all but, instead, a penile injury or fracture. The prognosis/treatment of that is somewhat different than for Peyronies Disease according to what Ive read. Just a thought...
I too have not replyed to the poll. There is simply not a category that I fit in.
I first developed Peyronies Disease about 12 years ago, no nodule, no pain, simply a "flat spot" on the left side about 1" long and smaller flat spots around the base on both sides, no curvature. The main things I noticed were loss of length, and loss of rigidity. Even when I got a strong erection, the problems at the base kept it from being sufficiently strong enough for, as an example, sex with my wife on top. Everything still worked, just not very well.
I stayed this way up until about 2 months ago. I now have a large nodule (some are calling it a pea) in the middle of my penis about 1" from the end. I now have a slight bend to the left and pain. The "pea" changes size daily, even hourly. As a result of this recent development, I have now started to look into any and all possible treatments.
Hey guys, this is kind of a basic question, but I'm not sure it's been asked before and I've been wondering...
The plaque I have is basically in the upper right quadrant of the penis. However, my slight curve is to the left, away from the plaque. I'm just wondering if anyone else has a bend that is in the opposite direction of the location of the plaque? Common wisdom is that the plaque's causes the immediate area to become more taut, creating the bend in the direction of whichever side the plaque is. I'm wondering if in my case the plaque is so close to the exterior of the tunica, that it instead is actually pushing the curve, just in the opposite direction.
I'm sure as with anything with Peyronies Disease, anomalies abound. I just thought I'd ask if anyone else has the same thing. Am trying to figure out if I must have some other plaque that I just can't detect.
Dcaptain,
Just a bit of a guess here. I know a a man that has had almost a 90 degree bend with no manually detectable plaque (scarring) I think the scarring may take different forms and that you do have scarring on the side of the bend, just not nodules or scars you can feel.
Another hunch, if you look at the picture of the keloid scarred chest, you will notice the ridges or nodules in the front with the flat scar tissue left in the wake of the leading edge. I wonder if this explains your situation and if it explains why men often notice nodules moving or changing. Are they really reducing in one area as the leading edge of the scar wave moves on over other healthy tissue leaving flat scar tissue in its path?
That's a good point Hawk, there has got to be something causing the left turn on the left side. It just seems so strange that I can't really detect anything.
One thing regarding the whole keloid discussion too - as I do have a few keloids, of note is how long they take to get very hard, on par in "hardness" with a Peyronies Disease nodule. I had a keloid scar on my chest that I would say took upwards of 10 months to get "rock" hard. (At which point I went to the doc to get it injected.) The only reason I bring it up is because I wonder how long the Peyronies Disease nodules take to develop. My two bb sized nodules are pretty hard - if they were keloid scars it would have taken awhile.....(longer than I suspected I even had Peyronies Disease).
Anyways, just adding to the discussion. I think.
dcaptain
Welcome to Roadblock who is brandnew to the forum and posted a great history post using the provided template. Roadblock, since we have communicated with a few PM's I will get right to your 3 questions. I have input on one of them. Hopefully others will have additional input.
Roadblock's questions as posted in our Histories:
1) Did anyone experience (or maybe are still experiencing) the "waisting" I described above? In many of the accounts about "waisting" I have read are present with full erection but I experience this only in the process of obtaining an erection. Upon full erection I have no indentations or abnormalities in the area of the pre-erection "waisting"
2) I have read that there is a complete resolution of pain in almost all of Peyronies Disease patients in "6-15 months". Has this been true for everyone?
My pain has been so minor that I have little personal experience but I recall of very few if any that report significant pain after 18 months, except possibly during short periods of reactivation.
3) It seems like many members here have described having large palpable plaques. I have one small bb-sized nodule about 1.5 cm from the glands in the midline on top, and it has never been bigger than this. Is there anyone who does not have a large plaque that has had severe progression of their disease? (I can handle the truth!)
My plague is similar to yours and I know of several men that state they feel no plaque even though they have a significant curve.
My two cents...(welcome Roadblock!)...
1) Did anyone experience (or maybe are still experiencing) the "waisting" I described above? In many of the accounts about "waisting" I have read are present with full erection but I experience this only in the process of obtaining an erection. Upon full erection I have no indentations or abnormalities in the area of the pre-erection "waisting"
I infrequently experience the waisting effect, similarly only during semi-erection. I cannot make sense of it, but my "symptoms," if you will, are most prevalent during a semi-erection. At full erection they are actually less prevalent, and no waisting can be seen, ever. I get the wasting maybe 40% of the time, but I do not have problems with erection so eventually this goes away. I can't figure it out myself other than the fact that at full erection whatever band of tissue is causing the wasting effect is stretched out.
2) I have read that there is a complete resolution of pain in almost all of Peyronies Disease patients in "6-15 months". Has this been true for everyone?
Similar to yourself, I experienced pain only BEFORE I even knew I had Peyronies Disease. I had infrequent pain at the base on both sides a few months before anything became apparent that something (Peyronies Disease) was up. It was quite painful, but not knowing even what Peyronies Disease was at the time, and experiencing no other symptoms, I assumed it was just an oddity, or haphazard body pain. The pain for me completely passed.
3) It seems like many members here have described having large palpable plaques. I have one small bb-sized nodule about 1.5 cm from the glands in the midline on top, and it has never been bigger than this. Is there anyone who does not have a large plaque that has had severe progression of their disease? (I can handle the truth!)
I have one bb-sized plaque in the septum, dead center of the shaft approximately 2 cm from the glans. I have an even smaller plaque just to the right of this - when felt from a certain angle it feels like one single plaque, but it is two. I've had this for 8 months now and the curvature I experience (again more prominently at semi-erection) is relatively small. It has not progressed since it began. I realize it could at any time, am knocking on wood.
Hope this helps.
dcaptain
Thanks for the responses thus far! j, in response to your post in the Histories forum, I definitely agree that a 25 degree bend isn't terribly severe by any means. My concern is mostly the ED I'm experiencing secondary to these problems. My best case scenario is that it's a direct result of the anxiety that I've heard so many members describe...the pain, the fear of what changes I'll notice next, and the overall disappointment of seeing the current state of affairs when I do achieve an erection. So, although the etiology is uncerain at this time, the plumbing for all intents and purposes, doesn't work. :(
And I'm 29.
Even over the past week, the "waisting" I have been noticing (which probably has been present even before the most recent onset of pain 3 months ago) has been getting worse. I know academically that the pain will dissipate. However, the uncertainty of whether the ED will resolve and whether the waisting/curvature will worsen is what I am most concerned about.
I think since I'm so early in the process, maybe I don't see any light at the end of the tunnel. I still look forward to responses to the questions I posted earlier, but I also would like to hear "success stories"...that is, improvements in symptoms, curvatures, and ED that people have experienced that have changed their lives for the better. Possibly, this could be a new topic? I have read different people discussing fairly severe curves that have significantly resolved for no apparent reason and without surgery...I'd love to hear more!
roadblock
Welcome Roadblock:
First, I would like to state that I too can relate very much to your problem at the age of 29. My Peyronies Disease appeared at the age of 24 (now 76 plus) and it was a devastating blow to my sexual ego and physical being, etc. Have had the stuff come and go several times since onset. Also, have had a radical prostatectomy which left me with ED.
Comments on your questions:
1. Waisting. Had this occur several times that went away with various treatments. Currently have on a slight indentation on the left side of the shaft midway between the glans and the base. This seems to be a universal problem with plaque/nodules that develop in the midshaft portion, etc.
2. Resolution of pain. I had pain with all my bouts with Peyronies Disease. It disappeared usually within 6 months or so of onset of the bending/nodules etc. Have worked with guys that had pain constantly with no let up even after a year or two.
3. Progression of disease. Have experienced Peyronies Disease symptoms where there were nodules only and times when there were small as well as large plaque areas. Each case presented separate symptoms with onset and progression. Some developed slowly with curving at the same rate and others when the development was rapid like almost overnight with no curving.
In my bouts with this horrible mess, different sypmtoms appeared with the different types, etc. There seems to be no "normal progression pattern" for me. At present, I have no curve, can still obtain a workable erection through use of the VED, and have only one small indentation left where the last plaque area was located. I have achieved my original physical dimensions with maybe a slight improvement in length.
My best advice to you it to keep the faith, do not get overly concerned with the disorder, but at the same time proceed with all haste in obtaining the best medical help possible. Delaying treatment, at least in my case, caused havoc for me and delayed my marriage by quite a number of years. Since you are already married, your concern should be fixed on getting early resolution if possible.
Good luck to you and as we say down South, "keep on keeping on!"
Old Man
Old Man,
Thank you for your informative response...it certainly is encouraging!!! I was evaluated by a urologist two months ago and was placed on Vitamin E. What other treatments would you recommend pursuing?
roadblock
Roadblock:
There are several threads/topics on this forum dealing with many and varied treatments that have shown promise for treatment of Peyronies Disease symptoms. So, I won't go into them as they are self explanatory.
I have had great success along with many others in using the VED for treatment of the curve and/or plaques and nodules. You should consult your urogolist and ascertain for sure that you are a good candidate for using the VED. It does not work for all, but as I said, it has for many.
Should you decide to use the VED, get a good medical quality one that carries a good warranty. Several guys have tried the sex toy store models and have had problems with their warranties. I will be glad to share any additional information about the VED and its use with you.
The above carries my usual caveat in that it is my own personal opinion about the use of the VED for Peyronies Disease. Hope that you can get some resolution for this horrible mess.
Sincerely, Old Man
Here are a few questions I moved from the "Our Histories" topic:
1) Did anyone experience (or maybe are still experiencing) the "waisting" I described above? In many of the accounts about "waisting" I have read are present with full erection but I experience this only in the process of obtaining an erection. Upon full erection I have no indentations or abnormalities in the area of the pre-erection "waisting"
2) I have read that there is a complete resolution of pain in almost all of Peyronies Disease patients in "6-15 months". Has this been true for everyone?
3) It seems like many members here have described having large palpable plaques. I have one small bb-sized nodule about 1.5 cm from the glands in the midline on top, and it has never been bigger than this. Is there anyone who does not have a large plaque that has had severe progression of their disease? (I can handle the truth!)
I will give you my experience. This is "as it is" after 7 VI's.
1) Waisting is pronounced, but "slightly" reduced and only apparent when erect. At the "bend" my penis was probably narrowed from it's original girth by at least 1/3.
2) Pain is gone, other than with a very prolonged erection.
3) I have a mass that basically covers the entire top side of my penis, from base to head. It is the same width as my penis from base to mid-point and then narrows to almost a point at the head. My curve of 90 degrees has been reduced to probably about 70-80 degrees, but doesn't seem to be improving with the last 3 injections.
With regards to ED, how many of you at any point developed ED with the onset/progression of Peyronies Disease? If so, did it get worse, better or stay the same? My Peyronies Disease is mild with regards to bending and plaques, but I do have a fair amount of pain and have had trouble with ED. It's been just about four months. I'm curious what people's experience has been in this area. From what I have read many members here have moderate to severe bends and significant scarring but seem to function well.
Hey Roadblock :)
Hows things?
In response to your question, I experienced much ED because the scars was located from tip to bottom everywhere. Also the left penile base footing had been broken which caused precum flooding when the penis had been massaged. The loss of precum would always soften/stop my erection.
I think it depends on how much scar tissue is in the penile tissues taht causes ED. IF it is just the one small spot of collagen scar then usually the person shouldnt suffer ED.
The more scars the more resistance the penis will have to push through to expand into a full normal erection.
Hope this helps.
Cheers !
learn4life,
Thanks for the response! You know, as we all tend to do I have considered and re-considered my situation, and feel that maybe the worst aspect of my condition (the bend that seems to continue to get worse) might be from a traumatic injury. It obviously wasn't severe enough to warrant immediate medical attention but might have been the cause of a cascade of events that have lead to my current situation.
Unlike many people on here, I hardly have any plaques at all. There might be one or two bb sized nodules midline on the top, more towards the glans...nowhere near the middle where I have some waisting prior to full erection and nowhere near the base which seems to be the origin of the now close to 25 degree bend. Not sure how all of this adds up but sometimes I think we all feel we might be chasing our tail trying to make sense out of this condition...any change might be an improvement, but it might be just the natural course of the disease OR it could be worsening disease opposite the side of the originial problem!
Guess I'll just keep watching and waiting...
Ok, lets talk plaques.
Many members on this site talk about plaques and nodules, some "as small as a bb", some spanning the entire side of the penis.
My questions to EVERYONE, to hopefully generate some discussion of the details, are as follows:
1) When did you first notice the plaque(s)?
2) How quickly did they progress in size from first being noticed to their biggest size?
3) What do they feel like? Are they firm like a hard rubber or are they softer? Do they have distinct borders? Rounded edges? Or are they more erratic in their distribution?
4) Is there pain associated with the plaques? How long did it last?
5) Has anyone experienced improvement and/or resolution of plaques?
I think many of the newer members, including myself, would benefit from a discussion regarding the details of this aspect of Peyronies Disease.
I guess since I'm asking, I'll briefly describe my situation. I have what seems to be one bb sized noduleabout 1.5 cm from the glans along the midline. I've noticed that along most of the midline, there seems to be a hardening. I don't remember it ever being like this. Some of it hurts, some of it doesn't.
I'm also developing what could be a plaque in the same area (essentially the middle) right on top in the midline where I am also experiencing some "waisting" with soft erections which goes away with full erections. I say "what could be" because it isn't hard and it seems like it could very well be one of the deeper veins just protruding a bit more as I get older.
So, basically I don't know if I have severe plaques or maybe very little? Looking forward to the feedback.
I've often puzzled over the "BB" shape reference often cited because mine has been nothing like that. It's more oblong, and a bit bigger than a BB. And there's just one, although it's wreaked havoc on my unit. I tend to think, although I haven't had this confirmed by my doctor, that it's grown a little in the year I've had Peyronies Disease. This is in spite of six verapamil injections.
I wish I had the type of "waisting" that's apparent when soft, that goes away or diminishes when hard. Mine is the reverse: In soft state my penis looks normal. Upon hardening the rightward bend and waisting/buckling occurs. The latter has gotten a bit more pronounced in the past six months to the point where it looks like a significant constriction.
The residual pain cleared up by my fourth month. This is another issue that varies completely from patient to patient. I've been told by other patients of pain that has been quite severe.
One final point: Those protruding veins you mention have nothing to do with Peyronies Disease. I asked a doctor about that same topic when I was in my 20s (I'm now in my 40s) and he said it was nothing abnormal or problematic.
I wanted to recycle this topic as I posed a few questions a few posts ago and didn't get much feedback. :(
Also, I wanted to ask another question. The poll at the top of this topic asks the question of how long it took to reach a stable curve. MY question is how many members and guests that have reached a so-called stable stage with regards to curvature have seen a reduction in their curve?
It would make sense with all of the discussion we have been having on this site about VED's that men with a curvature with normal erectile function might experience a lessening of their curvature over time, and even moreso on appropriate oral medications.
Feedback is greatly appreciated, especially any stories of positive results!
Poll results of Dcaptain's poll question on length of time until curve stabilization.
This is only for those that either have or have had curvature that has STABILIZED. How long did it take from the 1st sign of curvature/bend to reach the MAXIMUM angle? DON'T include any time associated with any later improvement. Thanks dcaptain.
Less than 3 months-----------------11 (25.6%)
Between 3+ and 6 months---------10 (23.3%)
Between 6+ and 9 months---------- 5 (11.6%)
Between 9+ and 12 months----------5 (11.6%)
Between 12+ and 18 months---------2 (4.7%)
Between 18+ and 24 months---------5 (11.6%)
Between 24+ and 36 months----------2 (4.7%)
Between 36+ and 60 months----------0 (0%)
More than 60 months--------------------3 (7%)
43 members participated in this poll.
Roadblock,
Thanks for a good question. Check the poll and see if it reflects the information you are after. Also, in addition to responding to the poll questions, please give a post that relates your experience as it relates to Roadblock's question:
Have you seen a reduction of curve after reaching maximum curve and stabilizing?
We all know the Peyronies Disease affects each differently. With that in mind I ask a question:
How do you know if your Peyronies Disease has stabilized?
I've had Peyronies Disease for 6 years, but no ED. At the end of the first year I thought it had stabilized as the progression seemed to stop. Within a year it started to advance again, and this on and off has been the case since. My good friend PDFTD (Barry) has had it for about 9 years and his is not stable either.
The high percentage of those who say their Peyronies Disease is stable in the poll are in the early stages of 3 to 6 months. This leads me to question if their disease is really stable, or the progression has only stopped temporally. I'm not sure urologists can say when the disease has stabilized unless the plaque has calcified.
Larry,
You ask a great question and open a necessary point up for discussion. I considered a follow up poll in a year that asked something like "How many people voting in the previous polls found that their Peyronies Disease had not infact stabilized"?
We could easily soon ask the question:
"Has your Peyronies Disease appeared to stabilize followed by disease progression?
Yes, after 4 to 6 months stabilization
Yes, after 7 to 12 months stabilization
Yes after 13 to 24 monts Stabilization
Yes after more than 24 months stabilization
No, and I have been stabilized for at least 1 year with no sign of progression
I cannot answer the question due to the way it is worded.
I do not think that many that answered "3-6 months in the previous poll however, mean that they were only 3 to 6 months into Peyronies Disease when they participated in the poll. I think they they mean they may have had Peyronies Disease much longer but stabilized at 3-6 months.
All of this points to the importance of a proper phrased poll questions with proper choices for answers. They are difficult to design. Especially with a limited question length. i have considered a seperate board, just for polls instead of attaching them to other topics.
I voted no in this post, but I'd like to qualify it: In my case the indentation has gotten slightly worse since verapamil injection treatment.
Bob
Interesting point...and I would like to complicate the issue further. ;)
It very well could be that some (not all) Peyronies Disease patients who experience "improvement" in their curve might very well be experiencing WORSENING Peyronies Disease opposite the original curve that acts to straighten it out. This is the principle behind the Nesbit plication, shortening the side opposite the curve to lessen it.
Just a thought...
No, what happened to me is the indentation is squarely where the plaque is. So that is where I received my six verapamil injections. It's essentially the same - angle of bend, etc. - but the "narrowing" seems a bit more pronounced.
Roadblock,
You win my vote for the grand prize (an unpaid trip to the Bahamas) for making the excellent point of the day. I might add that the competition has been keen today because there are a lot of great posts in the past several hours. We have shared ideas that make us question when "stabilization" is really stabilization, and now, when lessening of a curve is really a sign the Peyronies Disease is getting worse.
Although, straightening of that type should cause some size reduction. I guess some men may not notice a small size reduction. That is one benefit of a VED. It is easy to tell your full erection length on the tube. Other forms of measurement are affected by ruler placement, degree of erection, etc.
Hopefully, as we get responses to many of these polls, we may be able to cross reference them and draw some conclusions even if many of the polls are less than perfect in and of themselves. Clearly, these are not scientific polls but they can reflect some rough patterns of progression experienced by members of this forum.
Hawk,
???Is there (or could there be) a page that presents the results of all the surveys that have been done? I think it would be usefull to see everything all at once.
With regards to stabilization, we all agree that this is hard to quantify. Especially since severity, etiology, age of onset, etc. all play a role. Maybe it's helpful to think that even if a new plaque is forming that it might actually offset a previous curve!
What I want, and I'm sure it is what many on here want, is to hear stories of improvement. Much of the anxiety and fear that comes along with Peyronies Disease is the fear that our sexual function will be compromised. Peyronies Disease patients with significant pain I think deal with this severely, as I have. Now that my pain is vastly improved with almost no pain with erection now, I'm just dreading either a worsening curve with scar tissue remodeling and contraction or a return of this affliction, the cause of which is unknown and therefore is totally unavoidable.
Old man seems to be a pretty positive example of a positive attitude and perseverence leading to positive results. If new members haven't read his story, I suggest you do.
We all could use more stories like this. Some people on here have significant curves and I bet still have satisfying sex lives. Post your story! Those stories are what keep hope alive for many visitors to this site.
Looking forward to many more posts!
Quote from: Steve on January 23, 2006, 10:09:11 PM
Hawk,
???Is there (or could there be) a page that presents the results of all the surveys that have been done? I think it would be useful to see everything all at once.
Steve, that is a good question and I have thought about a few ways to do it. We could list all completed polls under one topic called "Polls that have been Completed" or we could actually set-up a board area similar to the "Resource Library" or the Off Topic" area. In that board, we could show each active and each completed poll in their own topic. I think I am a bit concerned that the members may find a lot of different boards on the forum to be confusing.
Another reason we have not done anything is that we have only run a couple of polls so far. Part of the reason for that is because each topic can only have one active poll attached to it, so it is a bit self-perpetuating.
We will discuss it further.
hawk have some questions are you there
I have heard many members stating that besides the curvature, they are functionally "normal" i.e. capable of strong erections. I am almost 6 months into this most current bout with Peyronies Disease (had a small one a year ago that resolved near the head...looking it back it was most likely Peyronies Disease) and although my curve isn't terrible (approaching 20 degrees now) I still cannot imagine being functionally normal.
My theory is that since I still have pain, my erectile tissue is "sluggish". That is, when I begin to get an erection, the more inflamed parts don't stretch so easily, giving me some "banding" or "waisting" in the middle that resolves once full erection is achieved. It's almost like moving a sore muscle. However, even when flaccid often I seem to be less "flexible" than I used to be.
Has anyone else had these experiences or something similar? Does this story sound familiar to some of you who have had this plague longer than I? Can anyone help me with what to expect from here?
As always, appreciate any and all feedback!
It has been almost 3 years since I first noticed my Peyronies Disease and have been stable for about 2 years. I was wondering what are the chances of it recuring (or resurfacing since it is always there)?
Quote from: emersonchief on February 14, 2006, 08:43:07 AM
It has been almost 3 years since I first noticed my Peyronies Disease and have been stable for about 2 years. I was wondering what are the chances of it recuring (or resurfacing since it is always there)?
I had my first bout of Peyronies Disease approx. 12 years ago. Some flattening on left side and a small amount of flattening on the right. This resulted in a loss of about 1/2" in length. I was still able to get a pretty normal erection, and aside from the mental side of knowing what had happened, life went on as normal. This all changed about 5 months ago. I had another onset that resulted in a "pinched" end. I guess this would have been an hourglass shape had it not happened at the end of my penis. 12 years ago, no pain...this time, very painful and definate effect on erection, length, etc. I would guess another 1" in length loss since the head basically does not get erect. The pain has subsided some in the last month, but overall, I am left in a fairly useless natural state. I tried Viagra, and what's left working does get erect, but it is not a pretty picture and right now the pleasure is not worth the pain.
jaysum,
Is there anything you can attribute to the latest bout? Did you have an injury? Or did it just happen with no real precipitating event?
roadblock
I was 26 years old when I first noted an induration or plaque on the left side directly under my circumcision scar. I treated myself with high dose Vit E for 2-3 months and complete resolution as though nothing ever happened. At age 42, 16 years later, for no reason, I get the same plaque at the EXACT spot as before. Now I am 43 still have it, 30-35 degree bend mild to minimal discomfort/pain. It appears stable now at almost a year. I continue with the Thackers formula, daily Vit E, Daily acetyl carnitene, and enzymes. I used topical verapamil for 6 months---- a waste of time and money. I appreciate the forum. I am a physician and have gotten alot of practical advice here.
were there time that your symptoms improved in terms of your curve? pain seems to improve, curves seem to remain stagnant at best. has this been your experience?
Quote from: totheleft on February 17, 2006, 09:18:05 PM
I was 26 years old when I first noted an induration or plaque on the left side directly under my circumcision scar. I treated myself with high dose Vit E for 2-3 months and complete resolution as though nothing ever happened. At age 42, 16 years later, for no reason, I get the same plaque at the EXACT spot as before. Now I am 43 still have it, 30-35 degree bend mild to minimal discomfort/pain. It appears stable now at almost a year. I continue with the Thackers formula, daily Vit E, Daily acetyl carnitene, and enzymes. I used topical verapamil for 6 months---- a waste of time and money. I appreciate the forum. I am a physician and have gotten alot of practical advice here.
Totheleft:
As a physician, do you feel that the Thacker's formula is safe and works? Is DMSO OK to use and effective? My Uro, a specialist in Peyronies Disease, didn't know if DMSO is safe on penile tissue.
Thanks,
Phil
I really don't know if it is or not. What I do know is that there other disciplines such as veterinarians who have used it for quite sometime. I believe clinicians in eastern europe have used it as a liniment for quite some time. It is inexpensive and from what I can see no adverse long term side effects. i really don't know if there is any literature in regards to the use of dmso on penile tissue. One aspect that is impressive about dmso is that it is a good penetrant into tissue in general and can carry other compounds with it. There was one report about the poor penetration of topical verapamil into the penile plaque and this apparently was shown on specimens resected from surgical corrections of peyronies. When I originally read that last summer, my first thought was that I would not expect verapamil levels at all in the scar because it is a scar. it is an inert tissues without a blood supply. However , i believe that normal surrounding tunica albiginea also had almost no levels. I have also wonderd about dissolving topical verapmil with dmso. The disease can obviously be disheartening. Unfortunately conventional medicine can't offer much. I can identify with some of the uros out there with similar type patients--patients who have an upsetting problem that we as docs don't know much about, and really have very little if anything to offer and need to tell our already frustrated patients . I have always kept an open mind in my practice .I don't practice alternative medicine but have dozens of patients in my practice who have achieved relief with whatever the modality is. I am caught that I look for scientific analysis but I also want something done or want some hope in some treatment now....... this is to be human...... I hope this was not to long winded. So far I have been using thackers for about 8 or 9 weeks with no ill effects. If any one knows more about this please let me and evryone know................have a good one...........
Roadblock, I literally woke up one morning and had the proverbial "pee hardon" and felt a lot of pain on the left side. I went into the bathroom noticed a bend to the left and the indention at the head. No trauma, no indication that there was anything getting ready to happen. I was absolutely in shock. I actually thought maybe it was something else at first. But, it only took a little while for me to admit to myself that it was back. What a bitch.
Quote from: roadblock on February 17, 2006, 04:09:19 PM
jaysum,
Is there anything you can attribute to the latest bout? Did you have an injury? Or did it just happen with no real precipitating event?
roadblock
Totheleft:
Thanks for the insight. I know a couple of the guys here have used it extensively with no ill effects and with some improvement. Do you feel the enzymes you are taking are entering into you system through your digestive system and reaching the plaque?
Thanks,
Hi Phil,
Unfortunately, I don't know. Let me give you a little more history, about me. When I diagnosed myself, and I knew immediately what I had, I immediately hit the internet doing literature searches for a possible newer treatment. In a previous post I had mentioned I had a plaque years earlier which apparently got better on Vit E. I continued myself on Vit E thereafter, for 16 years before i had a recurrence. So was it the vit E or just my own immune system resolving it on my own ? So, with my recurrence Vit E was not my first choice, but I did make sure i switched to natural gamma Vit E. In my literature searches It seemed that topical verapamil actually had some promise. I don't remember the site, but I read an abstract that topical Varapamil resulted in better than a 80% improvement in pain initially, with an improvement in the bend with long term use~6-12 months. As stated in my previous posts, absolutely nothing, hence I am really depressed. So I am feeling desparate. I bought the online book, from the skeptical nutritionist on peyronies disease. Like everyone else, We are looking for possibilities, anything.
I believe these supplements are relatively safe. I decided to take several months of vitalzyme as a trial. Thus far, I am as i was 4 months ago. I believe my disease has stabilized, I believe the pain improved on its own which is natural for the disease process. For reasons I cant explain, I think I still feel promise with the thackers. Unfortunately except for Surgical procedures I don't believe there are any studies which are able to document a Medical improvement with enzymes, vitamins, supplements, topicals, mechanical devices etc. Unforunately alot of the successes, in my opinion, in alternative medicine are based on anecdotal or an individual's testimony to a certain treatment as opposed to an objective randomized study.
But like yourself, I am willing to put some faith in someone else's experience and try "unproven" remedies. Unfortunately in conventional medicine, we cannot do that. It may lead to a lawsuit.... haha........Have a good one.......totheleft
Just from passive observation on the forum, it seems like the only "success" has come from IR and the vacuum device. Makes sense...the tissue we are dealing with is similar to the material that makes up our tendons, and the way to improve flexibility/mobility after musculoskeletal injury is heat and stretching.
In the early inflammatory/painful stages, many of the supplements are probably doing their best work. Vitamin E, PABA, acetyl-l-carnitine, baikal skullcap, Vitamin D supplementation...I think the earlier the better.
But what about "stable" disease? Well, since we are essentially dealing with scar tissue, these supplements work on the scar formation/remodeling process. So, in conjunction with the stretching you get with the vacuum device and infrared heat which ultimately will cause micro tears in the scarred tissue (which is the point of maximum tension), the HEALING of those microtears will be hopefully normalized by the supplements.
Anyways, that is my theory. Unfortunately, I still have some pain so I'm not doing much of anything. I believe the rule "if it hurts don't do it" with regards to Peyronies Disease is valid. But once that is completely resolved, I'm going to continue with the supplements and do the stretching/IR. We'll see how it goes!
I think there are three realistic possibilities: AA4500, traction, and antifibrotic drugs.
1. AA4500 appears to work (based in Phase II trials) but Auxilium isn't apparently in any hurry to complete the approval process and market the drug.
2. Traction (VED and stretching devices) is gaining credibility. Traction forces applied for long periods of time can cause the crosslinked collagen bonds to break and re-form in a uniform direction, lengthening the fibrotic area and relieving the bend.
3. Peyronies Disease is one of a group of "superficial fibromatoses" which might respond to antifibrotics such as are used against - for example - pulmonary fibrosis or desmoid tumors.
The problem with #1 is that the patent is in the hands of big-money guys and they make money just buying and selling the patent, rather than actually marketing a product.
The problem with #2 and #3 is that we need some urologists willing to try these things instead of just continuing to prescribe the old standbys like colchicine, pentox, vitamin E and transdermal verapamil - none of which actually do anyting in my opinion.
I'm pretty skeptical about the IR 'heat lamp' treatment. Without lab analysis to see what's really happening with the tissue at various temperatures and durations, it's just a shot in the dark.
"Thacker's Formula" is in my opinion essentially a folk remedy with little anecdotal evidence and no obvious scientific basis.
I agree with J's post. It is a very good post. However, I also think infrared or likely any type of deep penetrating heat coupled with the traction/ved devices might alos be a beneficial addition. I realized some benefits while aggressively using infrared heat and light VED use. I assume it was the infrared heat that helped. However, I will be honest my peyronies seems to be very unstable. It has came and gone. It has been a very unusual case. My biggest improvement last year seemed to come unexpectedly when I had almost gave up on treatment. It reversed by 70 to 80 percent within weeks. My penis is in good shape right now. I would say it currently is as healthy as it has been since pre-Peyronies Disease days. However, I am not convinced I am out of the woods. I feel like it is in some kind of remission and could strike back at anytime. I just don't trust it.
Joshua
Joshua, I suspect there are multiple causes for a bend or curve, all of which are currently being called Peyronie's Disease. I am perhaps one of the "classic" cases since I also have Dupuytren's contracture and Lederhose. My bend came on in a short period of rapid progression and hasn't changed in the 2 years since. Transdermal Verapamil did nothing, neither vitamin E. Maybe some things work on some guys, depending on the underlying cause. I don't claim that I have "real" Peyronie's and others don't, that would be pointless - a bend is a bend after all. But some people clearly have an underlying fibrotic disorder that manifests itself in several ways. Others may not have the same systemic disease, but a similar problem due to localized injury or inflammation.
Another aspect to consider is that some plaques have calcified, so you are no longer dealing with a totally collagen structure. A VED may stretch the collagen, but may not stretch calcified plaque, hence it may not work for some people. If some oral treatments actually destroy the collagen, they may still leave a cacified structure. (This may also be a reason for the ACV in Thacker's formula.)
Just a few general questions, hoping someone has some positive insight...
My Peyronies Disease seems to be "diffuse"; that is to say, not just one area of plaque but pretty much the entire thing. There is nothing I can point to and say "yea, that is a plaque." Most people here on the forum talk about plaques and focal symptoms. I have pain up and down, "banding" or "waisting" when semi-erect, and so far just a small curve with erection. What can I expect?
Hoping especially that some of the new members or visitors might have a similar experience and can add some insight if they are further down the road. I'd love to believe the pain is gonna go away and everything will be great but I doubt that is gonna happen (me being cynical!) It's been almost 6 months, almost two months of an intensive oral supplement regimen...anyone have any words of encouragement? I'm 29 years old...what do I have to look forward to?
roadblock, I also have no visually obvious lump or 'plaque' but a more generalized area of fibrosis. The pictures you see on medical web sites show a pronounced lump but I think that's just for illustration purposes. The urologist that examined me said I had a "large, thick" plaque. I think what he identified was a sizeable area of fibrosis in an interior layer. Also, I had pain for months and it eventually went away - that's typical.
flexor, I keep hearing about 'calcification' but I have yet to see a scientific explanation of what that really means. I see detailed descriptions of cross-linking in the collagen, but nothing about deposits of calcium. I've had Dupuytren's contractures for years and they've never 'calcified' as far as I can tell; and when hand surgeons talk about Dupuytren's there's never a mention of calcification. Do you have a web link to some factual information on calcification?
Interesting reading men. I had small beads (2 or 3) about twice the size of a BB but they were gone within a couple months and they were deep enough that I had to be totally flaccid to find them. I did so by working with a finger on one side of my penis and my thumb on the other. They were at the point of a thumb sized indentationindentation. My natural state was a 15 degree upwardward curve. I quickly got a 15 degree downward curve. That went away so i was straight. Then I developed a 10-15 degree right curve. I can feel a texture difference in that area but nothing I would call a lump or plaque, or calcification. It feels like subtle scar tissue.
J, I am sure I have read that "calcification often occurs to the plaque" on medical web sites. I am at a loss to verify that however, so I am interested in the answer if it is found.
Great feedback...I really appreciate it. Hopefully many other members will benefit from it as well, and hopefully more members and visitors will post more stories so we can all learn from each other's situation.
I can't give any references on the calcification of plaque. Like Hawk, I have always understood that some plaques could become calcified. May be worth researching.
You could check on the report on the Leriche technique in the Resource Library, where the individual patients are defined as having calcified plaque or not, this being identified with ultra-sound. And the table of results identifies the individual results as with being with calcified plaque or not.
The point being made in that report is that they consder the technique suitable for both calcified and non-calcified (which sort of implies that other techniques may be suitable for one and not the other.)
I did some more web searching and found many references to calcification, although no hypothesis as to why or how it occurs. Apparently it's quite visibile with ultrasound or other imaging techniques.
Every now and then someone brings up the Leriche technique and I still wonder why it's not (apparently) being done anywhere. Or maybe it is, in Europe, where the medical community seems to be more pragmatic, less concerned with litigation - and maybe less money-driven.
A similar techinque is used in Europe for Dupuytren's contracture with great success. It's now being slowly adopted by a few hand surgeons in the U.S. It's called "needle aponevrotomy", the results speak for themselves and the momentum is growing. If some urologists would decide to try Leriche - I'm sure that with research and careful procedures any risk of nerve damage could be minimized,.
Not to change the subject, BTW great information guys, On the subject of progression. I wonder and I am thinking of wording a poll, about how many of us started our Peyronies Disease with the classic hard "bb" or "pea" sized ball or balls of hard plaque in the middle of our penis?
Joshua,
Good idea. Mine started as a bb sized lump and seemed to move over time to different locations in the middle of my shaft, and got slightly bigger to about pea-sized. It now cannot be felt, but rather a kind of fibrous cord the length of my flaccid penis is the only thing I can feel. However, when I went for my ultrasound, the uro identified the size (18 cm) and location of the plaque. I'm 19 months into this thing and it seems to be stabilizing. At least I hope it is.
Phil
phil,
How much of a curve did you start with and how did it progress? Was it related to where your plaque was? Did you have pain and if so how long? I have noticed that band-like thickening longitudinally in the center that you were talking about myself, and I'm worried that since it's only been about 6-7 months for me, that as this scar heals and contracts it's gonna get a whole lot worse.
Roadblock,
I did not have any curve for about 11 months. I did have a small indentation on the left side for about a year. That location is where the plaque is, and that is where my curve began to develop. It started at about 30 degrees to the left, went to about 60 , and now seems to be at about 45 degrees, however now I have an upward curve also of about 30 degrees. Pain was present on and off for about 6 months. I had a prostate infection which seemed to complicate diagnosis. I was on 4 different antibiotics for 6 months and this probably helped prevent plaque from enlarging. Had a cytoscope for the infection and after that was diagnosed with Peyronies Disease. Went another 6 months with pain, and then curved developed. Pain seems to be gone now, but infection seems to be back. Now back on antibiotic. We'll see if it helps scar. Probably not now. Uro wants me to try iontophoresis but i can't find anybody to do that procedure locally.
Hope this helps.
J: Dr. Mulhall discusses calcification on the APDA web site (peyroniesassoc.org) under "Ask the Doctor", Jan. 2004, ques. 2.
HI, NOT SURE IF I'M DOING THIS RIGHT BUT HERE GOES.NEVER DID A CHAT, FORUM, NOT COMPUTOR LITERATE.
MY PENIS WAS ALWAYS STRAIGHT WITH A SMALL DOWNWARD CURVE. IN NOV. '05, IT HAD A DOWNWARD BULGE ABOUT 1/3RD FROM THE BASE. UROLOGIST SAID Peyronies Disease. NO PAIN, NO DISCOMFORT. I'M DIVORCED, HAD NO ONE TO " EXPERIMENT " WITH. NOW DR GIVES ME SCRIP FOR 3 MONTH SUPPLY OF "POTOBA". 6 pills per day, 4 x's daily. I'M 67 Y.O.. AETNA HAS NOTHING LIKE IT. MY DR JUST FAXED THEM A FORM TO SEE IF THEY WILL ACCEPT. I DID FIND IT ONLINE FROM A PHARMACY DISCOUNTER FOR $ 953 FOR THE 3 MONTHS. I ALSO FOUND HOPE PHARMACEUTICALS, SCOTTSDALE, AZ- 1-800-755-9595 THAT HAS A GENERIC. " AMINOBENZOATE POTASSIUM. 3 MONTH SUPPLY- $ 447.75, WHICH I ORDERED UNTIL AETNA COMES THRU.
MY CONCERN, ACCORDING TO DR, IT COULD GET WORSE, PAIN, ETC. NATURALLY I'M WORRIED, EVEN FORGET THAT I HOPEFULLY WILL MEET SOMEONE. SHOULD I GET A 2ND OPINION ???
I READ SOME OF THESE MESSAGES IN HERE & IT SCARES THE HELL OUT OF ME.
CHARLIE !
Charlie,
You did a wonderful job in expressing yourself. Had you not mentioned your inexperience, no one would know. I really do not know much about Potaba, except the reports have been mostly negative; stomach issues,etc. Although some men have reported some benefit, I for one would suggest you do seek a second opinion. It certainly will not hurt.
I am curious about your symptoms as you mentioned you do not have pain or discomfort. What are your symptoms?
Hoping for the best when you visit another physician!
Wizard
Maybe someone can provide me with some info based on their own experience...
When people describe the "hourglass effect" or "waisting" they are usually talking about during full erection. In my situation, however, I will have a rather severe hourglass effect while obtaining an erection, but once I do it isn't there at all, although it does appear to contribute to the overall curve slightly.
Has anyone had this experience? What was the progression that you experienced? As always feedback is appreciated and will benefit everyone!
roadblock
In my case, the hourglass is not apparent when soft, but becomes pronounced when erect and gets more severe the harder the erection. About half my original girth is reduced in about the middle third of my penis.
Roadblock,
Your symptoms are similar to mine. I only infrequently have what appears to be an "hourglass" effect, and only when semi-erect. It's more like when I'm about 40-50% erect. Once I have a full erection there is no hourglass. It really hasn't changed much over time. I don't know that this helps, but at least I can say I'm experiencing the same thing.
dcaptain
Below is an important post by SteveW. I moved it and the responses to https://www.peyroniesforum.net/index.php/topic,30.0.html in order for any or all to feel free to continue a very appropriate discussion and for new comers to be able to find some support from what they read.
Quote from: SteveW on March 30, 2006, 12:40:48 AM
Nothing has improved. Doesn't look like it's going to, I guess. And over the last few days, I have become incredibly depressed and defeated. I'm just short of a year in, so I probably sound like a big weenie, but my condition and prognosis just seemed to hit me full force lately. This condition makes me feel, for a lack of a better word, lost. I logically know I am not alone, but emotionally I am suffering. Don't exactly know where to turn next. I am not generally a defeatist or negative person and I have tried, but damn. Looking down at what appears to me to be a deformed and ill-functioning penis has wiped me out of late. Sorry gentlemen, I probably shouldn't have posted this, but I just needed to vent....or whine....as the case may be.
Somebody had previously posted that after an erection, they noticed differences with "deflation" after erection. I have had the same experience...basically, I seem to have problems with getting erections, keeping erections and "getting back to normal" after an erection. Still have pain, still have a mild curve but my "scar" is through the entire penis and the whole friggin thing is shrinking, most evident at rest ironically. What an awful ordeal!
I forget who originally made the post, but just wanted to give feedback...
My Peyronies Disease started with a nice curve to the left and plenty of pain. After the pain subsided I started shrinking, length, girth, flacid, erect. What is odd is that now after 18 months with this I am noticing the shrinking more in the flacid state than erect. I have also developed the hourglass effect with a ever increasing indentation on the left - this is present before, during and after erections. I don't think this has stabablized yet as things are continuing to change.
Davidw,
How long did it take for your pain to subside? Mine has lingered for seven months, and I can't remember what it is like to have an erection without pain. My guess is I'll continue to shrivel up until it falls off...then the pain will hopefully go away! ;) But seriously, my guess is that the members who experience sudden onset of curve/pain with eventual resolution and no recurrence have a much better prognosis than members like myself who have gradual onset with no specific plaque just pain/fibrosis throughout. Just my opinion. I've read that 13% have some improvement, the rest either have static or progressive disease. I think the reason for the dichotomy (sp?) is that there are two types of problems going on, injury pattern vs insidious onset pattern.
roadblock
My pain lasted for about 6 to 7 months - so maybe you are almost at the end of it - so hang in there. The pain was the first thing I noticed. My wife and I were on vacation in Europe and I started to notice that I was hurting while erect, didn't think all that much of it - came home a couple weeks later and then noticed one night that things did not look right - infact they were leaning to the left...
I think I would say that mine was gradual as well, also I have been examined and no plaque was found which I still think is odd considering the indentation etc. Sometimes I feel the same way as you - it's just going to continue to shrivel up until it falls off one day!
For those of you who suspect you have Peyronies Disease from an injury, can you tell me the duration of time between the injury and the first symptoms?
My boyfriend has had Peyronies Disease symptoms for about the past 6 months and was formally diagnosed about 8 weeks ago. We've been together for a year and I am having a very hard time thinking that I may have done something to him that has caused his Peyronies Disease.
Thanks!
apopka:
My first bout with Peyronies Disease occurred as the result of an injury sustained during a bad sexual encounter. Severe pain was experienced immediately, but that subsided in a day or two. Bruising appeared the second day, and stayed for about a week. Bending and curving occurred about two months later. The final curve/bend was 45 degrees downward and 45 degrees to the right.
It took about a year before the Peyronies Disease stabilized and recovery started. Many treatments were undertaken, so I don't really know which if any worked. It could recovered on its own. However, the nasty stuff has come back and gone into remission several times since that time about 52 plus years ago when I was 24. My last occurence was in 1995 when I had a radical prostatectomy. VED therapy successfully made a recovery from that episode. Currently, I have no visible signs of Peyronies Disease.
Sincerely, Old Man
Thanks Old Man...
Is is safe to assume that severe pain is the norm when an injury that leads to Peyronies Disease occurs?
Neither my boyfriend nor I can recall something that traumatic. I'm trying to gauge the approximate time frame in which the injury may have occurred. I'm feeling very rattled that I may have caused this.
Apopka,
We know significant trauma can cause Peyronies Disease. This contributes to a theory that micro trauma contributes to much of the remaining Peyronies Disease. The truth is, no one knows. There are men that inject ED drugs into their penis for years with no problem. I consider that more than micro trauma. If the genetics are there, the needed micro trauma could just be having enjoyable sex. Truth is, if the genetics are there, it probably does not always even require micro trauma.
Don't waste time beating yourself up over nothing. Unless you can trace it to an obviously violent act committed during a rape of an unwilling victim, it isn't worth the worry. Most men I know, are much more interested in love and support than they are in scapegoats. ;)
apopka:
No, severe pain is not always associated with an injury to the penis. Sometimes slight pain is present, sometimes severe, and sometimes there is no pain present.
Each case is different from each other. As Hawk says, do not place too much stock in whether or not pain is present or for that matter, any other situation that you think may have caused the Peyronies Disease.
Concentrate on thinking positively about the situation. Your support, care and loving kindness is of utmost importance to him at this time. Together, you should endeavor to see each other through a very difficult and trying time. That will mean more to him and anything else now.
Sincerely, Old Man
Quote from: apopka on April 04, 2006, 08:10:52 PM
I'm feeling very rattled that I may have caused this.
Well, don't. You may very well have had absolutely nothing to do with his condition. We often have no idea what brings on Peyronies Disease. Sometimes injury, other times not. Genetics? Cause and effect can be separated by many years. What did it? Sadly, we usually don't know.
If you really, honestly want to know the best course of action for you, apopka? Support him. Love him. Give him all the pleasure and receive all the pleasure you can offer each other. Believe me, I know personally, that a supportive and loving partner can, does and will make all the difference in the world.
I have a comment that I would like for others to chime in on. My progression of plaque nodules has been very active.. I originally had several plaques and a little almost stringy plaque on the top. I had a rock solid BB in the middle. My plaque has been very active almost coming and going. Currently I have almost no detectable plaque and pray daily it stays that way. However, a few weeks ago I had a small piece reappear and then went away again two weeks later. Has anyone else had "active" plaque.
Joshua,
I never really put this altogether until reading your post. Prior to my Peyronies Disease showing up I had several BB sized bumps on the bottom side and I never knew what they were - they were hard as rocks and looked like pimples to me. I don't even remember when they went away and I have not noticed them since the onset of Peyronies Disease - The last uro I went to did not detect any placque or nudules etc. Looking back I guess they had something to do with me getting Peyronies Disease. In reading and learning on this site I have always thought it strange that while I have Peyronies Disease I have no visible placque.
DavidW
My Peyronies Disease started as a small bead abt 3 mm in the middle,upper side. Its nearly three and a half years now and has remained the same, it was always hard from the time I noticed it,I assume its calcified.There is no curvature or pain. I went to an uro,who gave me a painful injection and never went back,the lotion 'Thrombophob' he gave me didnt really work.I have done nothing since, but of course Iam worried of progression,And am thinking of ionto,perhaps ALC and Vitamin E.
I have to mention Iam in India and am asian/indian. Verapmil or even gamma E for that matter is not available here,but surprisingly there is a physio who will administer ionto.There was an interesting study how ionto works irrespective of the medication in peyronniesassoc.org - has anybody tried this?
could some one give me an idea of the risk of prorogression? Could I buy verapmil/dexamethazone and ALC, gamma E on line?
thank u
Welcome Ofsho,
Thank you for supporting the forum by posting.
I consider "Puritan Pride" about the best and cheapest source of supplements. Believe me, I have compared dozens of sources and compared them on spread sheets. They don't have every product in the world but what they have is at a very good price. Depending on the sale, sometimes it is better than others, but the are running their best prices from now until some time in June. (I have been a customer for years and have no interest in this or any other company). Here is the link www.puritan.com
If I could get no other treatment, I would consider Acetyl L-carnitine, Vitamin E, heat, and a Vacuum erection device (VED). Maybe an anti-inflammatory like ibuprofen if you have pain or sense that the Peyronies Disease is active.
CAUTION: Do not exceed the directions on the bottle for ibuprofen.
Also be careful with heat and read the most recent posts on hyperthermia under the "Alternative Treatments" topic.
I have no medical background. This is only what I would try to do for myself.
Thank you hawk, This forum has been very helpful to me, I've read many of the posts and certainly figuring out some things have made me less anxious.Thanks all.
I will check out puritan.com but so far none of the companies I tried on line deliver in India so i have to find a means of getting it shipped. I have found a physio who administers ionto and am eager to try it - dont you recomend that? also I have a question - verapmil and dexamethazone injections are available here, can these vials be extracted and applied via ionto?
Try posting your question about Verapamil under the Verapamil topic. Hopefully someone with more knowledge of verapamil and iontophoresis will answer.
Guys...I am experiencing pain again. I was diagnosed last summer, went through the VI (10 shots) and the massive mass seemed stable, I thought. It covers virtually the entire top side of my penis (90 degree bend) from the base narrowing to a point just behind the head. The rough, irregular shape seems to change but overall, has been stable. The VI reduced the original bend by some 10 degrees or so and I thought, "well, I'm just gonna' have to live with a deformed dick." I AM NOT (at least at this stage) going under the knife.
Of late, I am experiencing pain again when erect. Not severe, but pronounced and certainly does bring a halt to the festivities.
Any one else have pain reappear after stabilization?
SteveW,
I think if you look under "polls" at the stabilization poll, that you will see many that progressed after an initial stabilization. Progression means acute stage Peyronies Disease and most in that group will experience some pain even if is only mild discomfort.
If you have not tried 2500 mg of Acetyl L-Carnitine in split doses, you should give it a try. I am positive that ALC at least gets rid of the pain in some cases. I suspect it does more. It turned my minor pain on and off at least 3 times in direct conjunction with taking ALC or Stopping ALC.
SteveW,
Also soon after taking L- Carnitine my pain totally went away. The problem is I'm on so many things now I don't know what is working so I just keep doing all of them. The only reason I pursued so many treatments is cause I got extreme penis shrinkage in the flaccid state and went off the deep end with medicines. I'm doing TV 2 times per day, IONO treatments everyday(switching the polarity for a total treatment time of 40 minutes) 800 IU's of vitamin E, Aceytl L Carnitine, and MSM daily.
ComeBackid
Previously I had posted many inquiries into Peyronies Disease progression, so I figured I would post an update on my progress so it might possibly benefit someone else out there with similar questions.
At this point, 9 months into this latest bout, my pain has remained but did fluctuate within a range of 1/10 and 4/10. Over the last month I have spent much more time around 1/10 than 4/10 and it seems to be heading towards totally disappearing.
The unfortunate part in this is that as the pain disappears, the scar is maturing and it has resulted in a loss of length and girth in both the flaccid and erect state. Oh well...still prefer this over the pain stage, and since it's pretty much inevitable that this is the course of the disease I'm glad to be where I'm at. My curve has lessened, but this is due to a phenomenon I had put forth previously that some curves straightening might in fact be due to a compensatory curve. In my case, straightening of curve plus loss of length equals some scar on the opposite side of the curve. Again...oh well, guess I'll just let it work for me while it will!
ED has almost totally disappeared, leading me to believe it was mostly psychologically driven. I still use Yohimbe for the rare occasion I have intercourse and have had good results. But honestly, I get good nocturnal erections and can get a full erection pretty easily now so I count myself as lucky.
Current oral regimen includes Vitamin E 400mg twice a day, Acetly-l-carnitine 1g twice a day, Baikal Skullcap once a day (contains wogonin), PABA 12g divided into four doses, and L-arginine 1g three times a day.
I also take 400mg Vitamin D once a day (see the Vitamin D discussion in other discussion threads for the reason why). Vitamin D can be toxic so I wouldn't go too nuts with it.
I'm hoping still to find a physician to prescribe me Pentox (aka Trental)...this seems to be one of the most promising drugs out there currently especially for individuals early in the disease progression and for those interested in halting progression. Hopefully the research being done will continue to demonstrate this trend.
Again, just wanted to update! Hope everyone is getting along ok with this stuff...
roadblock
Guys,
Recently I noticed as many of you have heard me complain about that my penis was shrinking in the flaccid state. Perhaps it isnt really shrinking, but the plaque is making the blood arteries into my penis more constricted. I say this because when I apply the topical verapamil, it is a blood vessel dialater, and my penis seems to hang bigger in the flaccid state, my erections are the same size though.
Seems to me that this scar contraction isn't to understood, perhaps the original plaque blocks off the blood vessels allowing less bloodflow into the flaccid penis, and this causes the scar to contract, versus the scar just contracting naturally on its own over time.
Another question for thought I've had is my scar wrapped around the corpus cavernosum, and as the scar contracts keeping the corpus cavernosum from expanding, or is the scar changing the corpus cavernosum tissue into inelastic fibrous tissue and this the reason for the loss in size.
ComeBackid
Well that may be the $100,000 question. In my humble opinion, if your plaque is more "plate" or "mass" like, rather than the "nodules" many men have, then the mass or plate is occupying space and constricting what would normally be loose skin when you are flacid. Calcified plaque "bonds" to you and the area it occupies has to come from somewhere. That IMHO is what causes the wasting and hourglass effect many of us suffer from. From what I have been able to read, this doesn't happen with men who are affected with a more nodule like formation, but can be severe in men with large masses which cover a larger area. The problem is...who knows. We seem to know a whole lot more than the docs do.
ComeBackid,
My opinion: If you get a straight full length and girth erection then you simply have no scar tissue on the tunica because scar tissue cannot stretch to normal dimensions.
As I recall, taking a cold plunge after a sauna made the penis shrivel up to the extreme. In this hyper-flaccid state it felt more firm since the tunica was contracted so tight and the tunica itself would be thicker in a contracted state. I suspect that your reduced flaccid state is because you are "shriveled up, cold-water flaccid" meaning less than normal blood flow for a typical flaccid state but not scar tissue.
If all the above is true then why are you in a hyper-flaccid state? Possibly either nerve or vascular interference from some source that is causing less than normal blood fill when not aroused. once aroused functioning, size, and erection are normal.
SteveW,
I was stable for two months without pain. I now have pain, but, I may be improving. I have been using l-arginine, l-carnitine, citruline, ginko biloba, Korean red ginseng and yohimbe. I am also applying heat 30 minutes, 3 times a week followed by using my VED. I have noticed regaining some length. I think the pain maybe due to positive changes in the plaque. Time will tell.
Quote from: Liam on June 10, 2006, 12:20:22 AM
I think the pain maybe due to positive changes in the plaque. Time will tell.
What actual changes have you confirmed in the size and shape of your plaque? And is it calcified?
I cannot confirm changes. The plaque on the dorsal side of the base seems softer. It also seems to be segmented or having discrete parts. Before, it was like a solid mass that almost encircled the base.
Could I be imagining? Possibly. But, I have felt some hope.
Also, that "turtle effect" is much improved. That is uncomfortable as well as disturbing.
Title courtesy of David Bowie
This link has a radiograph of Peyronies Disease. I've seen many questions about the size and shape of the plaque. You know the worth of one picture.
http://www.ijri.org/articles/ARCHIVES/2004-14-2/gastro_Imaging-153.htm
so im trying to hold onto a glimmer of hope here. Does anyone ever get better? I mean I can take a up bend and even some indentation but when it comes to ED, I cant take that. As long as I can have pretty normal sex im ok, so do you guys think alot of people with Peyronies Disease can have a normal sex life? Thanks
Yes i think a lot of people with Peyronies Disease have a normal sex life. Many on this forum. I also think that many more make reasonable adjustments that are quite satisfying for them and their partner. Truthfully some are more impaired with greater challenges. Their degree of happiness depends largely on their attitude and what they choose to dwell on, because that part is still a choice.
I wish I could totally put your mind at ease but I have no idea if I will wake-up tomorrow. If I do, I am determined to make the best of whatever I get dealt. You have to make the same choice and take heart that things are seldom as grim as they first seem.
Howcanthisbe,
I reread your first post. Anything is possible. But, if you've been two years and have no more problems than you say, you are home free. Anything could happen, but it doesn't sound bad. It may not even be Peyronies Disease. (only a doc can tell you for sure)
As far as ED. You were on target about alcohol consumption causing ED. Drinking 24+ beers in a night, I don't know how you were walking. Instead of worrying about vitamin E and supplements, you should start worrying about alcohol.
Try a Google search of Erectile Dysfunction and Alcohol.
Good Luck!
Liam
Thanks Laim and Hawk. Im just worried about not being able to have sex eventually, if I could stay at the state im at right now I would be fine. I just need to keep my head up, ive heard the VED use helps alot of people if done correctly for a extended time. So its good that there is a little hope that the condition can get better with proper care. I think my main problem is right now that im 23 and single. When I get a girlfriend it will greatly ease my mind if she doesnt notice it or doesnt see it as a problem. Just thinking of the condition steals my youth away, I need to get my head straight and see if it gets any worse. Thanks for the support.
23, i feel your pain man, i am 16. To me my youth is gone. I will never go "skinny dipping" "Streaking" or even attempt to have sex with the light on unless i can figure out a way to fix my problem. Im sorry you had to develop this so young.
my case: peyronie diagnosed two years ago. I am healthy, no smoke, no drink, good habits, no crazy stuff during sex, not recalling any injury. However I have herpes virus, diagnosed 4 years ago, with several recurrences during the first year, and not very bothersome in the last 2 years.
onset: feeling slight pain during erection on the top of my penis, first third starting from the belly. No bending or erection issues
diagnosing method: felt a nodule pea sized near the base in flaccid state, in the top rigth and I feel it by holding it with my thumb on top and pointing finger in the bottom side. During erection nothing is felt. Went to two doctors, they ordered ultrasound and ultrasound revealed some calcification.
treatment: doctor recommended wait and see, just take vitE 400, which in fact I had already being doing it 1y before the diagnostic, as part as my supplements cocktail (vite,b, c, multivitamins)
progress:
1-after diagnosed and manipulated by the doctor, started having pain even in flaccid state, it lasted for 1month, then no pain in flaccid state. In erection state, slight pain lasted for 4months more
2-after 1y, slight bend to the left, slightly up, small bump in the top where it seems the lump would be however not felt during erection.
3-as of now, I think that the erection in the base of the penis is not as strong as it used to be and if I have the lady on top I lose the erection.
my concern: despite the lump staying similar in size and position to what it was before, if I manipulate it, e.g rub it briefly with my fingers as I have been doing in the last two years to evaluate its progress, I start having discomfort in the penis, scrotum and sometimes the anus, hard to explain, a mixture of tingling+burning+freezing, that last up to 12h.
Has somebody experienced something like this, eg. discomfort or pain only after manipulation?
Other thing: if I masturbate I feel somediscomfort like that above afterwards but milder; if I have sex I feel ok.
I don't know about the concept of plaque, what I feel is a nodule or near-round/smooth-edged mass, in the top-right, however my slight bend goes to the left. I am panicking about this pain, thinking it might be this is not peyronie after all but a rare form of cancer.
TorontoGuy,
Within a few days after starting my Acetyl L Carnitine, my pain totally went away and has basically stayed away, every so often I will get a slight tremor of pain. I don't believe there is one medical study showing that vitamin E has any efficacy, I know I"ve been on it for the past three months and it did nothing for the curve. I was also on it for 6 months right after I got the disease and it did nothing. Most doctors who don't know much about the disease will tell you to take something, thats what my first urologist did. Basically they don't want to look clueless so they have to give you something to do for treatment. The pain after manipulation was common for me during the first year I had the disease, anytime I would get done with masterbation or a sexual act I had an aching pain, at that time I was told to only take vitamin E, had I known about the ALC I would of been on that in a heartbeat! The dosage I'm on is 2,500 mg daily, divided into two doses, one in the morning and one at night, after food, if you take it on an empty stomach you will have an upset stomach.
Hi guys,
We have a discussion going on in the Ladies room and one of our members would like to ask a question. Does anyone have any suggestions for allieviating the pain that is caused by the condition in the beginning stages? I know that it is trial and error but can you give me some of the things that you have tried specifically for the pain?
Any suggestions could be very well appreciated!!
Blessings, Chris
Christine,
Acetyl L Carnitine relieved the pain for me within days, and several others have told me it did the same for them. I take 1250 mg twice a day, once in the morning after food, and once at night after food. Studies show that ALC may also help reduce the curve. This is the best advice I have to get rid of the pain, I buy mine at wal mart but you can get this at GNC or any vitamin shop.
ComeBackid
Thanks ComeBackid. I probably should have posted the quote to let you know what he is trying already. Here it is
QuoteI was wondering.... does anyone know how long the pain associated with Peyronies Disease lasts?My boyfriend has had the pain for the last 5-6 months and does not seem to be getting better. Any suggestions on ways to alleviate it? He is presently taking vitamin E, Bromeline, Acetyl L Carnitine, Advil and Arginine. He started the Acetyl L and Arginine almost 2 weeks ago. .....
So as you can see he is already trying that. Any other suggestions?
Christine,
Is he trying epsom salt baths, or warm bath soaks in general, they probably couldn't hurt and may increase bloodflow.
ComeBackid
I suggested that after reading what Rico and others have had to say for it. She is going to suggest and have him start that. It makes sense that it could help to relieve the pain.
Christine,
I suggest that you have your husband start MSM, Fish oil(omega three), MSM is a sulphur, it has been used for athritis pain, and I believe that peyroines has been described as athritis of the penis. Also IMHO when you start mixing your aminos, without putting together a proper blend for tissue healing, you can once again IMHO:), be throwing off some of the other aminos. They all need to work together. Myself I believe that the brands the weight lifters and athletes use make sense, they are for tissue repair and added circulation, much research has went into these products. It is a competitive market place and since the 80's, they have been on the market. By buying this mix, you are getting the proper balance. Also I have put together a diet plan that is for inflammation, it helps. The MSM and Fish Oil (omega three), I think will stop the pain in 10 days. Glutamine will help with the delivery also of NSAID(advil), but like I said I would buy a blend, we talked about some of the ones on a early post under supplements...remember "This Shall To Pass" God Bless You Both!
Rico
Thanks Rico. Not my hubby I am referring to but I was asking for a gal in the Ladies Room who is trying to find some answers for her boyfriend. Am sure she will take your words of wisdom to heart. Poor guy is willing to try anything and I told her that you guys will have the answers better than I certainly would.
Your welcome, I have learn much from the group here. I do believe the body can be missing something, MSM has been the answer for many. Remember that peyronies if on the top side, there are many nerves in this area, more if closer to the top by the glands. I had no pain with mine. Dmso is known to shut down the nerve endings, hence no pain, I have been banged up my whole life, so dealing with these types of issues isn't the same to others, and everyones pain is unique, one has to learn to adjust. Pain is away of protecting the body, in some cases it is the time when the body is healing, but when it is nerves then you need to stop the inflammation or deaden the nerve endings, I know some guys who got tattoos over injure area of there body to deaden the nerves there, it worked. Can anyone say Barber's Pole:)!
Please, if you give me more details on his condition or tell him he is welcome to send me a message...Thank you.
Rico
Christine,,,kimo here,,,,I have gotten peyronies twice in 7 yrs and have suffered a lot of pain both times...What i used to take away the pain is very controversial usually no one believes me But it has worked for me both times..I used a magnet, i would wear it over the area of pain at night while sleeping and after a few nights my pain would be gone..The stronger the magnet the better it works.....It may not work for everyone but it really helped me....This is just my experience..If you need anymore help feel free to e-mail me, my address is listed...........kimo
Subject line on this post edited for easy reference.
hi all this is my first post. Someone in another mens health forum recommended this forum to me, I was hoping you could help me.
until recently - maybe 2 months, I was unaware of what Peyronies Disease but stumbled upon it when i clicked on a thread where someone was saying they had a curved penis and someone had suggested Peyronies Disease. was but I had always noticed i had an upwards curved penis, and not just a little, its seems to curve more drastically suddenly towards the top from a certain point. Im only 21, but ive noticed my erections arent as strong as they used to be, although i can get full erections they are not as they were in my early/mid teens (but i suppose noones really are).
i also am capable of penetration so it hasnt stopped me having sex. I can never remember a plague or any pain but recently i feel my erect penis is smaller, and even so flacid? as in its suck itself in quite considerably, im really worried and depressed bout this now. Is it possible for your flacid penis to be smaller as a result? + do you think I may have Peyronies Disease?
thanks in advance everyone,
Falcone
Welcome falcone. It may have been me that recommended this site if you were on Healthboards. Regardless, we have a great group of guys here and several are reaching out in various ways to men that are afflicted with Peyronies Disease. Gain as much knowledge by reading the material here. Don't be afraid to ask ???s. And by all means, try and search out a reputable Urologist in your area. ComeBackid may be able to guide you. You can send private messages to other members as well by clicking under their name. Remember, we are all in this together. You are not alone. Good luck. Christina, Epsom soaks. I use Dead Sea Salt myself. VASO from GNC products has many of the ingredients most men here agree with all in one capsule. Not promoting-just what Rico found for me! I even tried a warm salve of Aloe Vera, Emu oil, Apple Cider vinegar and Crushed Motrin. It helped ease the pain. And last I have a half tube of very expensive Transdermal Verapamil he can have. My pain went away within 2-3 days after applying this, but no other help at all. Could have been a coincidence. Just in case Hawk is reading this:haha-Zig
Falcone,
Do what ever you have to do, get to a doctor, a urologist as soon as possible. The wondering will stress you out. I waited six weeks, too long, once I went in, I was well read on it, was in denial still, but when told I had peyronies, I had mixed feelings, first was disappointment, more in the wait and see what happens approach by a top notch urologist, but a feeling of relief, knowing where I was and now I knew what to deal with. You are young, treatment in the early stages is more receptive. You might also come across a doctor who is proactive in this. Please make a appointment today, once even the appointment is set for you, you will feel a sense of relief, you are being in my opinion the most sensible proactive you can be.... I will say a Prayer for your quick recovery...
Rico
"Subject line on this post edited for easy reference"
Falcone,
When you go to the urologist (and you WILL go - right??), emphasize that it is *changing* and worsening. The flaccid length of the penis does shorten over a year of no treatment (recent data shows it goes from about 12.5 cm to 11.5 cm - the stretched tight flaccid length)(which correlates to the erect lenght).
The point is to not let him say it is a congenital curve that you wre born with, because he will add that if it is, that you should do nothing, especially since you are able to have intercourse. Now, it is possible that your penis is shrinking up because of stress from worrying! So try to relax, bathe in warm baths, stretch it out, use it - do all that. But still get an evaluation - you might benefit from some of the treatments we already do.
Tim
"Subject line on this post edited for easy reference"
thanks guys, Ill make a appointment with my GP tommorrow and ask him to refer me to one. its weird, cause i cant really remember if its gotten worse or not it terms of curving as because you see your penis every day you probably just take changes as the new norm and dont notice. All i know is it feels like my penis has been sucked in when flacid, I remember this happening to me about the same time last year, when i came back from my holiday - which is when ive noticed it this time, and I think it got better im not sure.
It's really getting me down, especially at the prospect of it being pernamently smaller, could do without it at my age. heres hoping its just stress or something but i dont know how that could affect the erect state.
Oh and one more thing, Ive used viagra maybe 10 times in the last year, just basically out of curiosity and improved sexual performance but gave me headaches etc so i dont use it anymore but last time i used it during sex was probably about a month ago -what affect does this have on peyronnie's - i heard its bad- and could this maybe have done damage and be responsible for the shrinking?
and thanks for the help and support i really appreciate it
falcone :)
"Subject line on this post edited for easy reference"
Viagra has not hurt me. Use the search on the forum and you will find research showing Viagra, Pentoxifylline and l-arginine are getting some favorable results in the lab. Hear are three to get you started.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Citation
http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints
http://peyroniesassoc.org/EffestsofPentoxifylline.htm
I'm sure you know to research everything yourself. Don't just do something because it is on the forum. You will get some great ideas. But, you will run out of hours in the day if you tried everything suggested ;).
OK.....
So I'm relatively new at the Peyronies thing and I have a question.......
I'm taking the supplements that have been recommended for pain.....
But which pain.....?
Daily sensitivety pain, for no reason throbbing pain, brush up against the kitchen counter pain......
Or erection pain.......
Mr.BLBC
I sent you a personal email Mr. BLBC on the pain issue. This pain is cause by the pinching of a nerve. The plaque becomes inflammed or matted. Once the inflammation phase is over, then the pain subsides. I believe it is very important to stop inflammation as soon as possible. Arginine and other supplements and epsom salt baths and a proper diet will help with this. Reducing ones alcohol content and rest and stress control is another way of helping with this pain. Of course location of plaque, near the tip for example is more prone to pain due to more nerves in this area.....I never had pain, I think this was due to the location being more towards the bottom on the septum, and I didn't get a pinch nerve.....Plenty of water, fruits and veggies with low fat protein will also help along with msm and omega three, and the amino acids....alc, arginine, vit e....
These supplements are meant for all the pain you asked about Mr. BLBC, these play hand in hand....pressure on the nerve can be cause by bumping or the pressure from a erection ect.....I had scar tissue in my back neck to a nerve, if I wasn't rested, not eating right, out drinking ect...it would flare up, when I took care of it, it subsided and became stable....sometimes you have to stop and take some time out for self care and think long term, if there is pain, then you should rest it till it subsides...
God Bless,
Rico
Pain may also be due to inflammatory changes in the tissue. Therefore, not only taking supplements, but probably NSAIDs like advil may be a very important part of healing. Ibuprofen not only makes it hurt less, but it may stop the biochemical process that causes some of the inflammatory changes.
I know of no data that prove that Advil helps reduce the advancement of Peyronies Disease in the early "active stages", but I know that my body feels better and the feelings I associate with advancing and active Peyronies Disease are gone after taking it for a week or so.
Tim
This may be splitting hairs but I am not sure we can say that Peyronies Disease pain is caused by pinching of a nerve. In the absence of exact scientific information on the cause of pain, I think we could safely say something like, "Pain is caused by inflammation surrounding the the nerves or actual inflammation of the nerves themselves". Maybe Tim or others have the background to know if pain can be caused by sources other than "pinching a nerve". I assume that nerve receptors can be stimulated to signal pain through other mechanisms and that maybe they can just be hyper-sensitive. I have also never heard any authoritative source conclude exactly what causes Peyronies Disease pain.
I have had only very slight pain even though at different times, I have curved down, then to the right, back straight, then up. I also have an indentation near the underside at the base. Individually, these curves have all been fairly minor but I think they must indicate scaring in multiple areas of the penis. Collectively, they have caused some reduction in length and girth. The only palpable plaque was near the indentation. That plague has diminished (very common) to next to nothing leaving the indentation.
hi ive made a appointment with my GP and im gonna ask him to refer me to a urologist to see if I infact have Peyronies Disease.
everyone talks about plaques, ive never had one so whats the deal with my curve and shortening? ???
p.s
this might be crazy but ,i fell my curve has changed a little for the better, really quickly at the cost of some length and girth this possible? ??? - i didnt mind the curve i would hav rather it been bigger
Falcone,
Many men never have "plaque" or scar tissue you can feel. Many on this site would indicate this fits their experience.
There are two things in the natural progression on Peyronies Disease that can cause a curve or bend to become less prominent.
1.That is a reduction in the scar tissue associated with a restoration of more normal tissue on the short side (or the inside) of the bend. The first is totally good but unfortunately it is not common.
2. The addition of scar tissue on the long side (or outside) of the bend to draw it up equal to the other side. This second cause is a mixed blessing because it reduces bend in a way similar to a Nesbit Tuck which is when they use a certain medical procedure to surgically stitch the long side shorter. It straighted the penis by making the long side equal to the short side. When this naturally occurs, it is an indication that the Peyronies Disease is still in an active stage of scaring and inflammation.
The above are natural causes of curve changes and do not cover surgical procedures, VED, traction devices etc.
Hawk,
That is a good point, it might not be the right term, pinching, pressing might apply. When inflammation is present it causes swelling, hence the effect on the nerves in the area....
Falcone you can have peyroines with not plaque, I never thought I had plaque either, two months later, the doctor said a area of my septum was scared, 1.6cm, I can tell now, and my curve didn't show up for two months either, but I had and still do a hour glass at the site....
Even though the plaque can resolve, or better word I think is subside or shrink, the underlying tissue is different, it has been replace with scar tissue, and this tissue doesn't have the elastic properties of the tunica prior to peyronies. That is why the theory behind the VED is to stretch this area to make it more expandable and regain lost length and width....
Tim is right on NASID, it works for pain and inflammation and goes to the source, and is a good way to stop it at the time. If the body has inflammation going on, you do to fix it....if you have say gum disease, inflammation in your gums, this can trigger inflammation in your hold body, that is why one needs to fight inflammation on a whole body approach in my opinion....it might sound crazy, but going to the dentist could help with your peyronies in a mild way, helping stop the pain associated with the peyronies, of course it isn't going to get your length, curve reduce ect.....but this approach to total over all health cannot be over looked either IMHO.....
Best regards,
Rico
I second Rico's suggestion to go to the dentist. It is clear that periodontal disease can accelerate cardiovascular disease (which may share some commonalitites with Peyronies Disease in terms of mechanisms). A holistic approach is very important.
Pain is an exceedingly complex issue. It is far more than simply pressing or pinching on nerves, although certainly that can cause pain. The direct stimulation of nerve fibers by actively inflammed adjacent cells may be a form of "cross-talk" that does not have anything to do with mechanical deformation of the nerve (such as what would happen with nerve impingement or compression).
I am glad that I have the pain. It tells me when the Peyronies Disease is active, and when it is quiet. And it is not intolerable for me, and it is treatable.
Tim
Tim,
I agree with you that the best way to say it is - direct stimulation of nerve fibers - this covers all the bases. "CROSS TALK" also is so true, I know when pain travels, it is a good sign to me, as you said it is a signal for you to understand what is going on, your body is talking to you...in a sense protecting you also from futher damage....there is a fine line of working through pain also, breaking up scar tissue ect...one has to be careful not to further damage the area.....
I keep coming back to ved, but I believe why it got such a bad rap with the FDA is that people with peyroines and ED were using it, pumping too much and putting on the rubber ring on there unit to hold the erection for a long period, this cause too much pressure early and cause more damage.
Most athletes can't wait to get back into the game, they rehabilitate to quick, causing more damage to the injury sight....myself included.....slow and steady, listen to your body, provide it with the supplements and rest it needs....I have read the VED protocol for 26 weeks, it says for the first three weeks to use the small cylinder for 5-10 seconds and repeat 10 times, for me when I get mine that I have order, it will be on the 5 seconds to I can gauge the feeling for awhile, I think less is better in this case, but the memory aspect(consistency is more important), till your plaque and surrounding tissue gets use to it...I also believe it makes sense to me to warm up first also, not just run home and being cold to start pumping ect...and some sort of cool down period....
I'm going to park for lunch now....circulation:)...
Rico
Hello everyone,
I am sorry i havnt been on for a bit, i have been very depressed lately and feeling hopeless, im sure youve all been their. Anyways i found that i dont think about my problem when i fish so i have been fishing everyday, sometimes even all night :). Anyways, i feel very blessed lately. My parents have scrounged up the money to take me to the two top urologists that deal with peyronies. One, was at Stanford University whos name i am forgetting at the moment but he prescribed me Vit E twice daily 400IU and Potaba 8 tabs three times a day. I followed this treatment for 2 weeks, i have also been using topical verapamil for about two months and i am around my 6th month of the disease. Today i went to the second top urologists as my mom wasnt happy with potaba after she looked into it. His name is doctor Lue (spellcheck) at UCSF. He gave me an ultrasound which i have been wanting and said i had no calcification (thank you lord) he gave me a prescription for Trental 1 tab three times a day and told me to stop everything else but VIT E. Before taking the trental i wanted to see if any of you were familiar with it. And i think i will continue you the TV just incase. Thank you all for your help, and i would love your input. God Bless
-Tyler
Trental is the brand name of pentoxifylline (pentox) that has been the buzz here for several months. Use the search for this site (top right corner of page). Search "pentox" and do another search for "pentoxifylline". You should find plenty of research on it.
Good luck!
Liam
Tyler:
First of all, welcome again. Self-care is an amazing thing to do - it will help you in ways that you never imagined. And, you are blessed indeed to have caring parents with whom you could share this process, and who could give you help.
Lue is good. Stick with him. Keep your fingers crossed about the Trental; stay on the vitamin E, and if things do not change at all, or get worse, ask him if you should also be on Viagra and arginine. The published reports of improvement (only a total of four reported cases so far!!!) suggest that all three are part of the plan, although the papers say that it is unclear if any one of the three drugs, taken alone, might do the job.
Tim
Forum members,
I find it interesting and also what goes along my way of thinking, Dr. Lue told Tyler to stop everything except the Pentox. I think we all can go over board with supplements, never know what is working or not....if someone is taking tradzone, why would they take maca also. ALC enhances mood brain function, why take goto kola(redundant).....a over load of one amino can block another, I really do believe in a blend that compliments each other with research behind it....water soulable vitamins aren't a issue, you will get them out of your system, maybe peeing out some money that is all....this shot gun approach in my opinion can do more harm than good.....one should sit down and look at each supplement, what is the reason for taking, arginine is great for blood flow and wound repair along with glutamine and ornithine, if you are going to do hard drugs, trazdone, pentox, potaba ect.....be careful, if the doctor recommends, pentox, arginine, and trazdone for you, then that is all you should take...once again vitamins and mineral supplement don't count if you are taking one that is also in a blend.....when I saw the doctor put together a plan like the pentox, arginine and tradzone, I thought he was on the right track....when I read someone is doing trazdone, pentox, gota, alc in huge amounts, arginine, maca, horney goat weed, enzymes, msm.....I have to wonder what his liver and kidneys are thinking....
I don't want to beat a dead horse here, but if you write down the amino acids you want in your plan and take it to a health store, you will find it, in powder form that you can drink with juice or pill if that is what you want....put together in a lab that body builders and athletes are using for circulation and tissue repair....one multi/mineral vitamin/ now address you own medical needs also, ED, stress ect....I believe the arginine and alc are the two best choices out there right now, what is put in the blend will enhance them.....now for example you would say, do I want horny goat week/maca or nox3, trazdone or will more exercise give me the same results, natural is better, I'm not saying one is better than the other, just not so many.....try a different fruit or vegetable, this could be the mineral your body is missing also for better health, If you look at the great athletes they attack it from nutrition 33% good diet and supplements for tissue recovery, 33% physical training....in are case VED three cylinder 26 - 52 week protocol....33% mental preparation....for us this is to cope with the condition, maybe this is where the tradzone, mediation, baths, walks, the forum, love ones ect......
Being loped sided, just throwing the pills left and right down, won't cure you, it might even make it worse...most people would probally do better also by adding more water to there diet than another pill also....Personally I'm not excited at all about Pentox from what I have read.....I wake up with erections so I have choose not to take trazdone, although I do have stress, but I going with walking and meditation instead......the remolding of the scar tissue with the three cylinder I put my most hope into along with the amino supplements and DIET, along with self care from every aspect of ones life, go to the dentist if you haven't in the last six months, stop the inflammation, pears and apples stop inflammation also, eating one apple is the same as brushing your teeth 500 strokes, yes it cleans them, just eat one and rub your finger on your teeth afterwards....rinse you gums with peroxide also, for about thirty seconds, this will kill the bacteria that is causing inflammation in your gums....which can travel thoughtout your body.....the next time you see a bottle of some oil that you are going to pay 20 dollars for, buy a bag of fresh fruit instead....
Rico
I think that one has to be judicious in how and when you add, and has to decide whether or not to substitute one thing for another.
For instance, I might take horny goat weed for it's phosphodiesterase inhibiting characteristics, if I was not taking viagra. If I was taking viagra, then the horny goat weed would be superfluous.
But one thing to remember is that all of these things do not work through the same mechanisms. The key is to go slowly, build layers of care AS NEEDED, and to consider stopping something that does not work (but to give it time).
ALC/PLC work one way; treazadone another (it is a very unproven thing for Peyronies Disease - folks are taking it for ED or "better erections" at night), trental is yet another kind of drug, as is verapamil. If the "best" thing is not working, then change it!
I have focused on specific amino acids, since there are published data supporting their use for Peyronies Disease. Other AA's may interfere or even diminish the effects I am working for, so I do not do a broad spectrum of those.
Natural is fine, but not always "better". The whole idea of pushing a biochemical process may require loading up on precursors to the action you want to force ahead (called "mass action" in biochemistry). You may not be able to do that with "normal" levels, especially if you do not do a specific sort of healing well in the first place.
Tim
recently I noticed some pain in the penis area off and on for almost 2 days. Now it has been gone for 4 days the pain, but can Peyronies Disease flareups be so short lived? I think my curve has gotton slightly worse and the dent has gotton slightly bigger. Its a horrible feeling to think this can get worse so fast any day. Is this normal progression?
Abe said, "The needs of the many are more than the few", I think Spock said this on Star Trek also:)!
Tim it is obvious you have a background in medicine and that is why I feel you are a huge asset to this forum, you keep some of us loose cannons at bay...
I have to stick by my guns on the amino acid mix for body builders, they do work in in conjunction which each other and promote tissue healing and circulation....I have check the amounts also of the arginine ect...and they are in accordance with what is suggested to take for are condition.....
If it isn't broken don't fix it.......there isn't any reason that I see to not follow the three cylinder 26 week protocol....
On the amino acids blends, once again much research has been put into these, they do work together, tissue repair is tissue repair....circulation is circulation......
The old saying of Abe means to me in this case is that many of us are busy, and have limited knowledge of the medical world and chemist labs, but we do know that we should take arginine, so why not make it easy on ourselves and go with a blend that a lab has researched, read the label, it even has instructions on when to take ect....and it works.....read the research xyenice has put into their products...marketing you might say, well it sells off the self, why, because it works, the nox in it will give you oxygen blood flow like you never felt before, I know, I use it.....but I do exercise also with it....
This is also a natural approach to peyronies, amino acids are the building blocks to your body, it is not a hard drug....or some harsh chemical......
When I say natural is always better, it is if that choice is apples to apples, ie....if you take tradzone and sleep better and get more erections, if by walking several miles and doing some from of exercise and a better diet gives you the same results, this I believe for the long haul the natural way is better.
I must say that someone is going to Dr. Lue and he is saying pentox, makes me wonder if these guys are chasing there tails, the medical community never wants to go with a mechanical approach, they are at arms with chiropractors, it embarrasses them that they have Dr. on there business card....but I believe they have to come to the conclusion soon that there pharmaceutical drug influence ways might not be the program for us, it is usually backed into, how do we make money off of this? do I want to put my name on a traction devise? what are the liabilities? how do we fit it on a rat's dick to see if it works? AA4500 I have no reason to believe in this product....this is going to bring back the elasticity of your tunica...PLEASE!...talk about pissing on your back and telling you it is raining!!
They have to face the fact the VED is going to be are best approach and get behind it with what ever can enhance it.....if they must, go pump up some rat dicks for the FDA.....
Rico
HCTB:
Peyronies Disease can progress very rapidly, and it is VERY depressing. It has happened to me, and it is so frustrating to say the least.
Keep pushing ahead, and at least tell yourself that you are doing what you can.
Tim
HCTB,
Are you taking arginine? Also the plaque will spread over the injury, a 1.5cm will spread to 3cm...the flare up probally has to do with inflammation and the nerves surrounding the edges of scar, you might notice some swelling and this will seem like the scar is bigger also and will be make your curve more prominent also.....think about any changes in your diet, or lifestyle, ect...right before the new inflammation started....I know some people will smile at this, but take a couple of long hot epsom salt baths to reduce the swelling....if you can get some long sleep periods in also, rest is so important during this time, and I believe it is critical to stop the inflammation now.....do you have a high fat diet? are you exercising, stress, ect....what trigger this?....are you taking fish oil(omega three)? nasid and msm during flare up? and sometimes a good flush will help, I mix 8oz of organic maple syrup with six lemons in a gallon of distilled water, this spike all your mineral needs....
Rico
What is the theory behind Pentox for it to work? I know it will thin your blood people have said in the past. Has anyone on this forum used the drug and saw a resolution in their bend, or gain back any size, how many people are currently trying the drug right now?
Rico or Tim,
I am into weight lifting and I take arginine and ALC. You talk about the right blend is there any other Amino's that I should consider? I am on a high protein diet and I got to say I feel good and my Peyronies Disease has been in check for the most part.
Thanks
If you are into weight training and your peyronies is stable, maybe you are taking the right amounts of argininge and alc....your age and diet are another factor....red meats and nuts and raisins are full of amino, and especially arginine....talk to some of you friends at the gym or a trainer and find out what they are taking, If you want to tell me more about you diet, age...ect...I will tell you what I would take if I was you....I don't take protein supplement, like a soy or egg base, mine is more for muscle gain and oxygen pump and tissue recovery, but most of the good ones are along these lines, some choose to use one or two different amino acids to compliment the other, but once again, you can get redundant and these blends are going after the same results....mine doesn't have alc in it, so I add that for instance, but I think I will go with maybe the vasco that zig is taking next time, What so you think of it Zig The Twig???????
Rico
ComeBackid,
The theary is the same as potaba and all the other anti fibro they give you. The studies I read, there was slight improvment on this one guy, 10 degrees after six months, and another 5 degrees after two years, with no gain in lost length, OH Yeah! Put me on that for three or four years.....
Now I don't want to discourage anyone, and if you are young ect......maybe it will work for you....
My urologist told me that if he was me he would do topical verapamil and potaba, I asked him if it worked, he couldn't even look me in the eye, he looked at his feet and said "Some guys have said it made there plaque softer", WHOOOOOPPPPPEEEEEEE!!!!! I reach out and shook the pecker checkers hand said no thanks doc, and haven't been back!!
Has anyone seen the movie Clueless! Thank God For the VED!! I wouldn't be surprise if Levine and Lue and all the rest will be shooting the bee venom in next....wait I heard that might work:)!!!!!!!!
Has anyone tried shaking dried chicken bones over there unit......
does masturbation/sex have any effect on peyronnies i.e worsening it etc?
I think the theory of pentox is exciting. Pentoxifylline modifies and affects the production and release of TGF-Beta, a proinflammatory cytokine (cytokines are molecules that modulate or cause inflammation). It also prevents the release of Tumor Encrosis Factor (TNF) which also promotes inflammatory events.
TGF-BEta is postulated to cause some of the inflammatory cascade of Peyronies Disease by stimulating collagen gene expression, which is turned off by the use of Pentox. One problem is that using it after the fact is sort of closing the barn door after the cows get out, but insofar as inflammation is an ongoing process, it can help turn off and reduce the ongoing (increased) production of collagen. That, in turn, might allow the natural "turnover" process to allow for degradation of existing collagen. I think that a combination therapy of turning off production (Pentox) coupled with a degradation promoting drug like Verapamil may prove most helpful.
Pentoix has a lot of exciting potential IMHO. And I would gladly take it for two to three years to get better. After all, I have been gradually getting worse for 30 years.
Does anyone know if Taking Potaba, And Pentox would be a bad idea together? The pharmicist says they dont interact. ???
Tim,
I agree with you, the barn doors have been closed, the scar is already there...inflammation does need to be shut down and as we suspect, this can be different in each person and there over all health...it is the culprit in most diseases, I put most of my early effort in stopping this inflammation and feel it is stable after four months, the first two I did nothing but the shot gun approach and the freaking out phase:), which the stress will only make it worse....inflammation will not go away if you are not rested and stressed out, the first time you see your bent dick, it puts you in shock, we have all been there....
I have read articles on pentox from years ago, one study was back in 2000, this has been around awhile. The other drugs also, anti fibrin types, I feel the same way as you do, the barn doors are shut, the cows can't get back in....yes one has to stop the inflammation...but is this the best choice....maybe a couple of epsom baths will do this...diet, taking a hard look at your lifestyle, what makes you feel good, bad, what foods work for you ect....
I feel that the reason we all response sometimes different is that the scar itself is different, some might be short, some long, some deep, if you have a small deep scar, no hour glass, when it goes away or subsides, the bend and lost of length might not be as bad, or they say it healed itself(did it)?, or was it the severity of the scar, mine is bilateral, and I might be swallow but covering a longer bilateral area, this causes hour glass and even if the scar improves, the elasticity of the tissue doesn't change....small tear, large tear.....the "A" typical peyronies like they show in there pictures is not what everyone has also, that is why I read each post and try to read between the lines, does his symptoms sound like mine, or is he in a different boat.....if you have a bent dick...it is peyronies, take two vit e and call me in the morning...we know it is more complicated than that, and there might be several different types of this condition....just think of all the conditions you know of...candycane, hook, bent to the left, bent to the right, hour glass, multiple bends and twist, pain, no pain, lost of length, lost of girth, dents, buckling at base......Maybe Dr. Lue looks at a young person, new to peyronies and says pentox....I don't know his rhyme or reason, they are not going to sit down and talk about your life style, diet, ect...you fill out the first visit forum, they get some history...I had peyroines for two months when I meet my doctor, potaba, the fibrin was there already....Well I'm going to jump in a hot epsom salt bath now, not for dick either, my legs are sore from running and doing some leg work....
Best regards and God Bless...
Rico
Tyler,
Your doctor should be able to answer that question, what did he or she tell you? I have not heard from one single person say that pentox or potaba worked for them. I've read tons of studies, come to think of it even that topical verapamil, Iontophoresis, and ALC all work on reducing the curve, I tried all three and guess what... they didn't work on me. I don't want to discourage you from trying these drugs, go for it, but be cautious of all these so called "medical studies." Come to think of it, those traction devices according to the webiste calculator are saying that Want IT and SteveW should have gained at least an inch by now.
By the way, did those two guys who saw results from topical verapamil join our forum?
ComeBackid
Ricco my friend. You are truly a delight, but I must respond to your quote:
QuoteI have read articles on pentox from years ago, one study was back in 2000, this has been around awhile... ...yes one has to stop the inflammation...but is this the best choice....maybe a couple of Epsom baths will do this...diet, taking a hard look at your lifestyle, what makes you feel good, bad, what foods work for you ect....
If we function from "
maybe" we can put anything after that phrase. For instance, we could say "maybe Epsom salts will worsen the disease", or "maybe taping an aspirin tablet to the area over the plaque will effectively treat Peyronies Disease". These would be pure unsupported speculation with no basis. Pentox has a number of studies and some of them show significant evidence (not proof) that pentox is effective. We take on a Great responsibility when we take a studied treatment with evidence and strong theory, and compare it to a substance that has absolutely no studies, and very little scientific theory for having any impact on Peyronies Disease. In fact
there is not even one single bit of anecdotal evidence that Epsom salts would impact Peyronies Disease and anecdotal evidence is the very weakest type of evidence. It cannot be responsibly compared to properly conducted studies. Newbies my well reject the most promising thing going based on a post that equates a wild guess as having equal status to clinical studies. If I am wrong and you have
one piece of evidence that it has ever had
any impact on
anyone's Peyronies Disease then please correct me my friend.
I encourage all to study (not just read) this page and to then weigh every post based in the light of this information. http://www.peyroniessociety.org/evaluating.htm
Enjoy your reading and enjoy your soaks, but I caution you to be careful about elevating those soaks to the status of a studied treatment, with real evidence that it could be effective in treating Peyronies Disease.
ComeBackid,
I know of no-one here who has taken Pentox - at least not for long (we might have one or two who have started it). The reports in the literature are intriguing to me because they are long term reports (several years) on people with either longer term disease or progressive terrible fibrosis (and it helped them both), and also because some of the better urologists are starting to try it.
For me - that is enough to try it (in that way I am like you). It is very discouraging to feel that you are trying yet another thing that might help, and to know it might not.
But what is the choice? Do nothing? Hell - I even sit in Epsom salts sometimes...
Tim
Tim,
I'm much more cautious then I first was, ALC, TV, and IOntophoresis all had "medical studies saying they work, some of them with high efficacy rates." I'm not ripping pentox, it probably can't hurt, but there seems to be a lot of "theory," around it, and how it might help. Did those studies show that it caused anti fibrosis specifically in the penis for peyronies disease? How much is the drug per month? I've already spent slightly over $2,000 and will be spending more soon when I go to see Dr. Mulhall, I"m going to ask him about pentox and see what he says. Can you post the old medical studies on pentox, I'm going to search from them on the forum if someone already posted them, I'd like to review them.
Thanks
Rico,
I am 48 years old and I have been taken 2 grams of Arginine,1.5 grams of ALC, 800 IU Vitamin E, (1 Mega Man Vitamin GNC) 60 grams of 100% Whey Protein,about 110 oz of water, & 5 grams of Creatine. As far as my diet consist of Chicken, Beef, Salads, Rice(flavored), Pasts & Veggies. I do on occasion eat fruits and nuts but it is not part of my daily diet. Overall I feel pretty good I lift weights 4 days per week. Like I said before my Peyronies Disease seems to be in check... some days better than others but seems to be more good days than bad. I don't think my Peyronies Disease is that bad... 15-20 deg. to the left and a hard lump on the bottom right near the gland. Almost in the gland? I have had it for a year now! Very little pain... some days no pain. Sex is not a problem but I sure would like it to be better (Harder & last longer). I seem to lost some length but not girth. Thanks for your opinion!!!!
Quote from: Rico on August 23, 2006, 03:43:00 PM
If you are into weight training and your peyronies is stable, maybe you are taking the right amounts of argininge and alc....your age and diet are another factor....red meats and nuts and raisins are full of amino, and especially arginine....talk to some of you friends at the gym or a trainer and find out what they are taking, If you want to tell me more about you diet, age...ect...I will tell you what I would take if I was you....I don't take protein supplement, like a soy or egg base, mine is more for muscle gain and oxygen pump and tissue recovery, but most of the good ones are along these lines, some choose to use one or two different amino acids to compliment the other, but once again, you can get redundant and these blends are going after the same results....mine doesn't have alc in it, so I add that for instance, but I think I will go with maybe the vasco that zig is taking next time, What so you think of it Zig The Twig???????
Rico
Hawk,
I agree with you. I do believe we need to make this forum a place where urologist and the medical community can come and feel welcomed and also find a mature audience to discuss this disease/condition of peyronies with...."The Needs of the Many are More than the Few".
I went on another peyronies forum, and it was terrible, immature people, lots of pissing matches going on and I read a couple of post and left, and haven't been back....
Sometimes I do ramble with my heart and gut feel, and this isn't a good case to hang ones hat on, I will try to refrain from this in the near future.....Thank you for bringing this to my attention, you are true leader and this forum is a place we can all come as brothers and work together to achieve our goals...
God Bless.....
Rico
I fell like my curve has slightly healed itself at the expense of around an inch in the last month or so? is this possible?
or are there other reasons for a reduced erect size?
Falcone,
After 7 years since my sports injury, it is clear my peyronies is progressing, just recently my penis shrunk and became hard all over. It appears as if my scar is contracting and healing, I to have lost about an inch in erect and flaccid length, I've also lost girth as my penis has narrowed substantialy. I no longer get daytime erections but I can get one from sexual stimulation or self manipulation. Have you noticed as you lost size that your penis has hardened as well, and in the flaccid state? My ask the doctor questioned has been answered by Dr. Levine over at the APDA site. I've also lost much elasticity of my penis, when flaccid its hard, almost like a rock. I fear the worst if the progression continues, its hard to tell if the disease has spread, or if the original scar has just healed itself by shrinking and contractng.
ComeBackid
Hello All,
I have been a participant in the ladies' room and have thoroughly appreciated the opportunity to talk to others.
My significant other has had peyronies since last Dec-Jan. The condition has continued to worsen, the plaque has gotten bigger and there is a small curvature. The pain for him makes sexual intercourse intolerable.
Three questions:
1) How long will the pain last?
2) Could this condition be permanent?
3) In terms of treatment he has a good diet and does regular exercise. In addition, he is presently on bromelaine, ACL 1500 g, Arginine 500 g, Vitamin E 400g, and 1 Advil per day. Are these the proper doses?
Any advice would be very helpful!
Cindy
Hi Cindy,
Glad you are here.
The regimen sounds good. Many of the therapies that people here sort of dislike (because they do not cure Peyronies Disease) are still good at getting rid of the pain. But the natural history of Peyronies Disease without much treatment is that the pain *usually* goes away.
I assume that your man has had a good exam and evaluation by a doctor - right? If not, it is definitely worth more digging for a therapy that might accelerate healing from pain, and to rule out alternative causes (all very rare).
The regimen described sounds fine to me (I assume your doses are milligrams and not grams!). You might consider taking advil 800 mg (4 tabs) three times a day for two weeks, and then going back to a lower dose based on whether or not the pain gets better. Also, warm soaks in baths can help pain.
The boards have several reviews of alternative treatments - some include ideas like iontophoretic application of verapamil, or propionyl L-carnitine, which taken together can relieve pain well usually.
The key word here seems to be "usually" (or in some of our cases that is "almost never"). If I were him and had a single area of placque, i would start massaging it and stretching it with a VED.
Tim
I have seen recommended 2000 to 6000 mg L-arginine per day. I am taking 2000 mg three times a day for a total of 6000 mg. This is just what I do.
The 800 mg advil with hot baths helped me,too. I also use a VED.
Also, read up on pde inhibitors and the role of NO in an erection. This is a promising area for Peyronies Disease as well as erectile dysfuntion (ED)
Well i went to see the doc as u guys said and asked to be referred to a urologist, but my GP said that my curve is normal. I know you guys warned me about him saying that but for some reason i accpeted it. The thing is my curve hasnt gotten worse infact i feel as if it has reduced itself, but i fell both my erect and flacid size has been reduced in the space of around a month, is this possible in this short time or am i just being paradoid but it relly looks like it has
thanks in advance guys
falcone,
I think it would best to see a Urologist, for the reason that you can't get your mind right when you don't know....I was in denial and a nervous reck, there is something about ones unit shrinking that will put a fear in the bravest man...it shock me to a point that I can't even describe, when the doctor told me I had peyronies(urologist), believe it or not, I felt better, of course I wanted him to say I didn't and that would of been the best answer, but the waiting was over...I spent two months reading and hoping it was stregtch ligaments or something....
The tunica loses it elasticy, and with this come lost of size...until VED came along, you were out of luck even if you plaque went away in most cases of gaining back your lost length...
Sit down with pen and paper and fill out all your smyptoms and get the most from your visit with a Urologist, call and see if he has peyronies clients ect....most do....treatment usually works best in the early stages, so don't wait, just making the appointment is being pro active, I feel for you and know it is very trying on your mind and the feeling of this run deep, get to the bottom of it and then you can start a plan to heal yourself, stress will make it worse, I must of looked at my unit a hundred times the first month, I was a wreck, I still hate it, but I feel there is hope with the forum and VED..... I haven't accepted it yet, but I have accepted I have it and I'm the only one who can try to remold it.......I just want to add that I don't want to come across as though you have peyronies for sure....but you do need to find out now.
God Bless You....there is hope with some of the new things going on and it sounds like yours is a case that could have some hope since you caught it early and it isn't as bad as some....
Rico
Falcone,
I read your all your posts again because I believe your questions to be important. If a doctor has given you an examination and determined you don't have Peyronies Disease, I would defer to his opinion. In saying that, I took into consideration your saying you had always noticed the curve and don't have any plaque,
It is fairly common to have an upward curve. Varied size during a flacid state is also common (remember George from Seinfeld's "shrinkage" in cold water). Erection may be impacted by stress, anxiety, or depression (worrying about it).
If it will help your peace of mind, go to a urologist. But, you should not worry.
Liam
Falcone, I agree with my friends. Spend the money, and go to a urologist. Isn't your peace of mind important enough to take the time to make sure? Keep the Faith...Blink
Thanks guys, yeh ill go see a urologist. Thing is im in the UK so im not sure how seeing a private urologist or what not works, the doc had said that if he referred me it would be a while before I was seen - like maybe a few months.
so you guys are saying with treatment size can be recovered?
one of you described it loss in elasticity, which is kind of the word i would use for it at times, feels like its tightened up and less soft more rigid and retracted when flacid. I hope its just anxiety and im glad to hear that depression etc or worrying about it can effect the erect size to.
So ill make an appoitment with my GP which will prob take around a week untill im seen and ask him if i can be referred sooner or pay and be seen privately, and in the mean time try and relax and see how it goes. im 21 at the moment so you can imagine how this is scaring me senseless and getting me down at this stage in my life, so I appreciate all of your help.
This is a great forum, im really grateful you guys replied.
So guys can lossed size be fully recovered? + if your curve partially mended itslef over time would this result in a loss? i.e would your girth and length have to be sacrificed in order for it to straighten naturally
I didn't know exactly where to post this...and I'm new to this . Ive always had a very slight banana curve. Now...in the last year...ive noticed it more. and in the last 6 mos...it has begun to bend more than curve to the left. Sex is still possible without much problem. Here is what is confusing me. I've read where people talk about feeling a bump ( plaque) and having pain. Well, I have NO bump...and absolutely NO pain. Heck, i thought maybe the bend was from all these years wearing tighty-whities. Of course as you might imagine it is a bit only slightly uncomfortable to use if i pull out very far and thrust hard during sex as it tends to want to bend at the area where it starts to curve.
I went to a Urologist and he confirmed no lump during examination. He said to take a wait and see approach. But I thought they might want to at least induce an erection and x-ray it or something. I just dont get it...i have NO pain and NO lump!!!! And i have seen a gradual worsening over the last 6 - 8 mos. anyone have the same issue? My curve/bend is about 30 degress from center.
Welcome JimJam
I never had much pain at all, and I only developed something that is barely palpable in the last year (after having a progressive bending problem for 30 years). It sounds to me like you have Peyronies Disease, and it makes sense to do more than "wait and see".
Once again, the lack of a standardized approach to diagnosing and treating Peyronies Disease rears it's ugly head.
Tim
JimJam,
Your right you should get an ultrasound done to see whats in there. The wait and see approach in my opinion is the worst thing you can do. I had no lump, but did have some pain, like an aching pain in my penis for awhile, then it went away and seemed to come back when my disease worsened. There are some very good doctors in regards to peyronies spread out around the country I'd try to get to one of them. I'd also get on some kind of treatment, pentox is believed by some to prevent progression of the disease, this is not proven, but I believe in the drug myself. There are many different treatments out there, you can view some on our treatments section of our webpage. Feel free to PM me if you have any questions as I've been on an extremely aggressive protocol for the last 5 months.
ComeBackid
I think it is fairly well established that plaque or scar tissue in Peyronies Disease shrinks as it matures. This does not usually directly correspond to improvement in bend, curve, dents, etc. Dr. Mulhall and others have documented this as a normal progression with Peyronies Disease.
How many others have noticed as time has passed and their scar tissue or plaque has matured, it has also shrinks in size, along with this for me seemed to come a loss of elasticity as well. There doesn't seem to be any data or observations regarding just how much the scar can shrink, will it shrink forever? Will it reach a point that it won't shrink anymore? What have other people noticed?
Did any of you guys have ED develop rather suddenly? A week ago I was still having very firm, full erections. Now I don't get fully erect anymore.
ComeBackid, I haven't noticed any shrinkage of my plaque since I first discovered it last year, but I've read that scar tissue does contract as it ages. I also haven't seen any data as to how much or for how long.
Misterb,
In the beginning I didn't really have ED at all and still got a lot of erections. I also didn't really have any shrinkage either. It was this past April that suddenly one day my penis was shrunken and hard, and I just totally stopped getting daytime erections all together. Before this my ED was only in not full erections, but I still got a lot, and sometimes they would be totally full.
ComeBackid
misterb,
One has to look at stress and other factors that can cause ED....I know for me it is hard to find myself in a sexual mood when I have my unit dunked in pickle juice and in some pumping vacuum machine and reading and thinking about peyronies.....
I know if I start to get a erection and start to think of the condition...well it becomes a flat tire...ones metal outlook can be a contributing factor in ones performance....
I remember this old cartoon....this older married couple were trying to get it on...she wasn't getting wet and he wasn't getting hard, they both just rolled over and looked at each other and said "You couldn't think of any one else either?".....
Maybe the old adage if you don't use it you lose it "Could" possibility be the case, does peyronies cause ED or does the stress of having peyronies cause one to have lack of use of your unit which in hand causes ED....I guess it is the chicken and egg and doesn't mean a rat's dick anyway...
Rico
Well, things seem to be working better at times now, so I think my erection problems are probably a result of being depressed and constantly worried (scared to death, actually) about having this condition. I'm going to see about getting an appointment with Dr. Levine, hopefully he can help me.
Warning to tothers: this is long (winded) and includes a bit of biochemistry but the gist of it is that I am concerned that arginine may be more harmful to me than helpful, since I am in an active phase of disease. If interested in why I think that, read on.
Over the past several months, and again in the last two weeks, I have noticed progression of disease. As a reminder of my history, I developed a mild constriction/tapering at the end, with a dorsal (upwards) curve over a *long* time (starting over 30 years ago). The curve upwards was associated with a mild erectile dysfunction and a tendency towards premature ejaculation in the last ten years. I attributed that to the increased sensitivity of my Glans being curved upwards and hence getting more friction. I now believe that this was also caused by a combination of flagging testosterone levels and a need to "squeeze" more to stay hard leading to an orgasm sooner.
At any rate, the progression seemed to be glacially slow. I can honestly say that it developed so slowly that I could almost never identify a *change*. This changed starting last year and led to my increasing concern and a renewed interest in finding a better way to care for it. Previously, I simply took vitamin E whenever it felt like it was getting active (and I can tell when that is happening - I feel a slight ache, and tend to pull "uptight"), and also took a lot of advil and had a lot of sex. But that way was no longer helping enough.
I have really wracked my brain to figure out why I might have gotten worse, and also why the worsening is accelerating now, in the last 3-4 weeks. I will not go over all the different issues I have considered, but the highlights include:
1) stopping coffee because the caffeine made me too uptight and I associate that with progression.
2) loss of coffee headaches, and therefore stopping advil (was advil helping to slow it all that time I was using it for headaches?).
3) a genetic predisposition to fibrosis (I have mild DC too).
4) constant inflammatory stress from a bad tooth that needs a root canal.
5) diminished blood flow and erections due to a low testosterone level.
So all of those seemed worth considering, and I have - I scour the literature as you all know and look for things that might help. I consider my disease currently active, and that is an important distinction between me and any other member of this community who might be "stable", IMHO.
I am increasingly convinced that the inflammation of my tooth (now scheduled for a root canal finally, in a few days), combined with a genetic predisposition to this sort of inflammatory response, is responsible for my condition getting worse. I believe that the mechanism is mediated through TGF-beta induced pathways.
So I have been reading up on this and have come to a couple of worrisome conclusions that might concern others here. Here is how a paper I recently read (last night) talked about arginine and arginase the enzyme that breaks it down. (Here is the link to the paper: http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1600-6143.2005.00876.x?cookieSet=1#search=%22Pirfenidone%20%20TGF%22 )
"The induction of arginase, an enzyme that metabolizes L-arginine to urea and L-ornithine, is essential for collagen synthesis (5,6). Indeed, L-ornithine produced by arginase can be further converted to proline, which is a central component of collagen. At least two isoforms of arginase encoded by separate genes have been identified (6). Arginase I is a cytosolic enzyme highly expressed in liver, where it functions as a key part of the urea cycle. Arginase II is a mitochondrial enzyme expressed in extrahepatic tissues such as kidney and lung. L-arginine can also be metabolized by another well-known enzyme, nitric oxide synthase (NOS), to form L-citruline and NO. There are three isoforms of NOS. The constitutive forms, neuronal NOS (nNOS) and endothelial NOS (eNOS), are Ca2+–calmodulin dependent, whereas the inducible form (iNOS) is Ca2+–calmodulin independent and is usually produced in response to pathological stimuli. NO is an anti-fibrotic factor with an inhibitory effect on collagen synthesis (7–9). Since arginase and NOS compete for a common substrate, L-arginine, varying arginase activity may alter the availability of L-arginine for NO synthesis (10,11).[bold added by me] Thus, arginase may be involved in the pathogenesis of transplant-related pulmonary fibrosis through its direct influence on collagen biosynthesis and/or indirect influence on NO generation."
The key thing I came away with, after I got excited about the possibility of modifying my TGF-beta activity, is that arginine (which I am taking in large quantities) may not be a good thing for someone with an active process of inflammation. I may be simply providing substrate for an overly active argenase, that can then lead to more fibrosis, instead of healing through NO mediated pathways.
Simply put, if one has active inflammation (mediated by TGF), then arginine may simply be adding fuel for the fire. It appears that controlling the TGF is key (for me) to breaking out of a cycle of the arginine to proline to collagen pathway (mediated by argenase), and moving towards the arginine to citrulline and NO pathways (mediated by NO synthase). One way leads to increased collagen deposition and one way leads to collagen breakdown.
Here is more on it:
"Despite excessive accumulation of fibro-collagenous tissue being pathopneumonic of pulmonary fibrosis, little is known about the role of a key enzyme involved in the biosynthesis of collagen, arginase. Arginase metabolizes L-arginine to urea and L-ornithine. L-ornithine can be further converted to proline, which is hydroxylated to form hydroxyproline. Given that the primary structural motif of mature collagen is (Gly-X-Pro/Hyp)n, overproduction of L-ornithine via an upregulated arginase activity would feed pathways favoring collagen synthesis, and thus contribute to the development of fibrosis. This notion was supported by a recent report that upregulation of arginase I and II led to excessive collagen deposition and contributed to bleomycin-induced fibrosis of mouse lung (28). In the present study we found that arginase protein and activity were upregulated in lung allografts with an increase in collagen formation. Increased arginase activity could be an index for severe allograft injury, as arginase activity positively correlated with PawP and collagen content in lung tissue. These observations indicate that arginase plays an important role in the pathphysiology of transplant-related pulmonary fibrosis. Indeed, treatment with pirfenidone resulted in downregulation of arginase protein expression and activity, which in turn, limits the supply of proline for the biosynthesis of collagen and thus accounts for, at least in part, the anti-fibrotic effect of pirfenidone seen in lung allografts."
I should have thought about this sooner - that arginine may be hurting me more than it helps, but retrospective views are often better than prospective views. I reread the literature on this a bit last night and found that the role of argenase has been examined in Peyronies Disease and guess what? Its important.
Bivalacqua, working with Hellstrom's group in New Orleans, showed in 2001 the importance of argenase in the devlopment of Peyronies Disease in the rat model. Here is the abstract:
Peyronie's disease is an idiopathic, localized connective tissue disorder of the penis, involving the tunica albuginea of the corpus cavernosum and adjacent areolar space. Current proposals as to the origin of Peyronie's disease suggest that fibrosis and collagen changes of the tunica are the result of an inflammatory process following vascular trauma. Our laboratory and other investigators have recently proposed an animal model for the study of Peyronie's disease. When transforming growth factor-beta1 (TGF-beta1) was injected into the rat tunica albuginea, tissue fibrosis was observed at 6 weeks. Therefore, our aim was to assess arginase II, endothelial and inducible nitric oxide synthase isoforms, and nitrotyrosine levels--all factors involved in inflammatory reactions--in the cavernosal tissue of saline-injected and TGF-beta1-injected rats after 6 weeks in order to evaluate the roles these enzymes may play in the induction of a Peyronie's-like condition in the rat. To examine the expression of endothelial nitric oxide synthase (eNOS), iNOS, and arginase II protein, and mRNA in the corpus cavernosum, immunoblot analysis, and reverse transcriptase-polymerase chain reaction were performed. We also determined immunohistochemically the expression of nitrotyrosine, a marker of peroxynitrite formation, in the rat penis. After 6 weeks, iNOS protein and gene expression was up-regulated and eNOS protein and gene expression was down-regulated in the corpora cavernosa of the TGF-beta1-injected penises. Furthermore, arginase II protein expression as well as immunohistochemical localization of nitrotyrosine was significantly higher in the TGF-beta1-injected corpora cavernosa. These results suggest that iNOS is the key control element for peroxynitrite formation, arginase II expression, and eNOS down-regulation in the induction of a Peyronie's-like condition in the rat.
So, what should I do right now? I really do not know. I am going to focus on antioxidant therapy, and stop taking arginine for now - in fact I am going to reduce greatly the use of all supplements and concentrate on the VED only. But it is clear that I have to get going with TGF modification if I want to arrest this process.
::sigh::
Tim
Dear Tim,
I would like to say first of all I can feel your pain your in letter and it saddens me, you are a good man and don't deserve this misery....and on this blessed day my prays go out to you...
I would like to give you my two cents:
First of all I don't believe arginine is the factor in your condition becoming more active....
The fact that you have a genetic predisposition to fibrosis and you are in a inflammatory state with your abscess tooth in my opinion is setting off your progression...the inflammation of the tooth can start way before one actual feels the pain....
I also believe that All the arginine and horny goat weed and supplements in the world will not cure your condition...yours is one of a more complex vascular problem...
I would strongly suggest you go to www.herbdoc.com Dr. Schulzes has a thirty day program...first read the book he has "There are no incurable dieseases" I have had experience with this program, not myself so much for I never was that sick, I did a modify version of this program and shut down my inflammation, my peyronies has been stable since the second month...but I seen very sick people change there life with this program...I took what I needed from it to shut down my inflammation...
Once your root canal is over you body will settle down a little...
I believe ones get more benefit out of two cups of coffee a day than not drinking it, it has a calming experience and will reduce stress, the key is no more than two...
Exercise is the key go good health....you can't have it without it..period...
Stress is the number one killer....after running a couple of hard 440's you will feel so calm in a hour or so....yoga and pilates, or just going for long hard walks in nature...
Music will sooth the soul, one should listen to his favorite music everyday....
Dr. Shulzes program for the thirty days is extreme...he does have programs for a week ect...but for you, I would do the thirty day program, I know people who where told by doctors they were done...cancer...and this program turn them around....it will flip the switch on your immune system....
I believe that Dr. Lue and Levine see this in the beginning with there clients, that they go after stopping and shutting down the inflammation as soon as possible, this is the pentox/arginine/viagra no other supplements..... myself from studying Dr. Schulzes and adding some programs for sport injuries such as epsom salt baths did the same thing...diet was only for anti inflammation...
I really believe if money is the object with most people they would be better off spending the money on good food and taking yoga or pilates courses or getting a personal trainer, going into the martial arts or to a health spa....the American way is to take medicine...there is something we like about that brown bottle with the child proof cap and medical label on it...it has to work, it is medicine....it is a bandage for the real problem sometimes....
I just finished two weeks with the "A" cylinder, this morning I woke up..UP:) and it was ever so slightly less bent...I was very happy to feel or see this very slight improvement....I'm starting my "B" cylinder tonight....I have been running now for three weeks everyday and my diet and exercise program is better than ever....I can tell my stress level has taper off or getting better...and I have lots of stress in my life, but after running hard and working out...I feel so much better, a very calm feeling, not pill induced...and you know my circulation in my loins is there when you are running...
I will say I do believe one can over take arginine also, these supplements are that, a supplement....I look at the diet plan of some of the best train martial artist in the world, the Brazilian jiu-jitsu..the Gracies...lots of arginine in diet..nuts, lean meats ect...all natural....
I believe you can turn your life around Tim..your smart and have drive....like I said before, I think you are a giver and you have to start taking Tim time....be sellfish for a few months to turn it around, flip the switch...lifestyle change...join a jiu-jitsu club or boxing club.... you need someone to push you...keep your mind off of this illness...
I will say a prayer for you today....you can do it, I know you will be better..your body is a remarkable thing and if you give it a chance it will respond....
Rico
Hello,
I am very happy to report my boyfriend is seeing a urologist who specializes in ED and Peyronies in Dec. We are looking forward to hearing what he thinks.
Just a few questions, from your experiences:
- should we ask about verapamil injections?
- is shrinkage permanent?
- how long does the pain last and is it associated with progression ?
- do errections which encourage blood flow help stop the progression of peyronies?
Any thoughts would be greatly appreciated!!
Thanks,
Cindy
Cindy,
There is no way to answer these questions with 100% certainty. I will address each point.
should we ask about verapamil injections? - I have decided against it because it is painful and the results I have heard have not convinced me
- is shrinkage permanent? I have regained some, but not all, size. My situation is complicated by prostate surgery.
- how long does the pain last and is it associated with progression ? Different times for different folks. Mine has subsided and reemerged several times. It will go away at some point.
- do erections which encourage blood flow help stop the progression of peyronies? I'm not sure its the blood flow or even the erections. There are some indications that l-Arginine, pentoxifylline, and Viagra help Peyronies Disease (and erections). VEDs seem to have benefit, also.
I hope I have not been too vague. We, the men here, are test subjects. There is nothing out there that is proven 100% successful. But, we keep trying to beat the odds.
Good Luck,
Liam
Cindy,
My personal opinion:
Your boy friend might want to consider this information before deciding on Verapamil injections: http://www.peyroniessociety.org/survey_ilv2.htm
Pain always subsides, the length of time is difficult to guess. Pain is a very good indication that the Peyronies Disease is in the active phase.
Shrinkage very seldom reverses on its own. Some have reported reversal with VED use.
I have nothing to add to Liam on the topic of erections except that if erections are painful, then I believe sex could tend to further inflame the Peyronies Disease and contribute to progression. The old saying, "if it hurts, don't do it"
Good luck
We were getting a good conversation going about the role of TGF factor, arginase, and the interaction of L-arginine. Many of the posts tied in to the original post, but focused on arginine so I moved 10 posts (including the original post that started the discussion) from this topic to the "Oral Treatments" topic. Most of them are still consecutive to each other and easy to follow.
I have been tinkering on a slightly quiet Saturday without enough to keep me busy.
I have found that if one takes a picture of an erection one can keep a good record of progress or progression. I had some thoughts if not exactly recommendations for how to do that as best as possible, and to make the picture less pornographic.
A quiet background is important - I recommend a blue background, but other colors can work. Use a color that will allow for a contrast with the shape and margins of the skin. It is best to take a shot from exactly to the side, and directly above to show a side view and top view (your view). If there is a lesion on the underside, take that shot too. One can wear blue undershorts and crop a picture to reduce the distractions (like a pot belly).
Erection quality is an issue. Doctors will try to document in such a way, but will induce an erection with an injection. One could take Viagra to be sure that the erection is as hard as possible (if it works for you). Using a ring to trap blood may alter the direction of the penis, so be careful of that.
After saving your digital image, you can alter it a bit in Photoshop. I am not sure how to do it in other programs. I found a Dupuytren's Contracture image on the web to use as an example (DC1). I discarded the color data (Image: Mode: Greyscale), and left it in grey scale (DC2). Then, in PS 5.0, I used a filter to change the appearance a bit by using a filter (Filter: Brush Strokes: Ink Outlines) (DC3). This makes it a little less embarrassing to give to a doctor, IMHO.
If you are interested in calculating angulation, there are several ways to do it (provided you are maximally hard). One is to draw a line down the center of the penis, extending straigt forward, and another down the center of the end. The intersection of the two lines forms and angle and that represents the deviation (DC4). You can also draw lines that are at right angles to the surface of the two parts, and measure the angulation where they intersect (DC5).
This might allow one to gather data to give to a doctor and to measure progress. Using a digital camera and the photohandling software that often comes with it can allow one to make a digital image that might avoid the embarrassment of having, say, a kid finding it. Also, one can do mor blurring to allow for les "relity". The examples are included below, and in the next posts.
Tim
Other images altered
Altered with brush mode filter
Angles measured
Tim
Wow--That must have been a slow Saturday. Looks like a lot of work to me but the pictures were interesting and that looks like an effective way to figure the angles and hopefully the progress.
I too was trying to figure a way to chart the angle of an erection so that I can see my progress now that I am starting the VED Portocol. I tried a couple of things out but they were not effective since the procedure can't take too long or be too complicated or the item to be measured shrinks away.(at least my item does)
I found an easy and cheap solution--I purchased a cheap plastic Protractor from my local Lowe's store for less than $5.00. It is quick and easy and can also measure inside angles.
Now I want it understood that I do not work for the protractor manufacturer or Lowe's (I am sure you can get there anywhere) and the opinion expressed here is my own. (please, that was a joke)
I am getting so comfortable here with posting and joking that I think I will sign off with my first name (screenname) from now on
See ya
Mister
Mister,
That's all we need is some protractor shill pushing protractors without one single clinical study to suggest they even work. ;)
I have mentioned this before but will slip in here with Tim's system. For anyone that has a VED, it is in my opinion, a very good way to record size increase/decrease. While a natural erection can vary, a VED erection can be taken to the same full point each time. It removes most the variables of ruler placement, how hard you press the ruler. Most don't find this erotic enough to maintain a maximum erection. It is easy to mark directly on the tube with a marker, or mark on a narrow piece of masking tape running lengthwise. There is no guessing if you are gaining or loosing and even very small changes can be seen. A camera is an option, but not needed.
Depending on your VED, you only have to be sure enough skin at the base is inside of the tube to allow full expansion and not give a backward pull. Most men with a VED are well aware of this simple issue.
PS: Tim, we are really glad you chose a non-pornographic digit for illustration. ;)
Tim,
Well, I guess I've been doing things right all along...I've got over a years worth of weekly pictures from the side, and I've always used the same darkish blue towel as the background. I have my wife sit in a chair, so the picture is taken from more or less directly from the side. I have taken ony 1 photo from the top, as all my deviation is vertical, but I think I'll take a few more occasionally incase some other deviations start to form.
As far as angulation measurement, I drew a line with a pen from the base to the tip while soft, and then, after getting erect, took another. I then used these lines to measure the angle. Personally, I think your way seems easier, and I'll go back to a few photos and re-measure and see how the two compare.
Steve
One comment on the VED. I have had days where I didn't, um, measure up to previous standards. It induces a great amount of anxiety in anyone who is worried as it is. However, I have learned that a good hot bath beforehand (I am not worried about infertility - but younger men thinking of having a family should be), and I have found that this loosens me up enough that I can reclaim my lost millimeters, and I will be comparing apples to apples instead of apples to oranges.
Tim
Tim,
I've noticed the same thing in the past few weeks. When pumping, I get fewer pumps before I start to feel some discomfort, and this results in a smaller erection (especially noticeable when in the largest cylinder). I think I'll try the hot bath trick to see if that helps (I'm not planning on any more kids either).
Steve
I have only been working with the VED now for my third week....still no change, but then it is only my third week....
The one thing I learn from Angus is that if you take a few pumps and release and keep doing this to warm up like you would warm up in exercising then you can go for a larger erection, this seems to help me.....instead of counting how many times I'm doing it, I go for ten minutes, five more of warm up and then several for the full pump and then a couple of warm down pumps....I do agree with taking a warm bath first though, or wrapping your unit in a hot cloth first.... I try to do some yoga or pilates first, just get thing moving a little....
Having the warm blood though and giving it a couple of warm ups seems to help....I just saw that ky has come out with a personal warming gel.....I think this could be good, it is a little more expensive, but the heat would be good I think, if I was going to build a VED for peyronies I would think about having it in a tube that was heated, maybe with steam and lube..... I'm not joking about this....the newest craze is hot yoga...it is so much easier to stretch when you are warm.....this gel by KY suppose to warm to the touch of ones skin....I would like to sneak my ved in the sauna at the gym, I'm sure I would get some funny looks:)....
Rico
Rico,
Yes Angus is right do about 5 minutes of warm ups, just pump a few times and release to get the blood flowing and get your member bigger, when you first start out it will be small especially in the B cylinder and not get as big right away.
Your expecting results to soon my friend, I'd wait until week 13 then do an evaluation, the process is extremely slow if it works.
Rico don't get caught like that judge who was pumping while residing over cases... :o
ComeBackid,
I know it is a 26 week protocol...not 26 days:)....
I really didn't expect anything for a couple of months, and then a small improvement, mine is a hour glass on the dorsal, and I do believe this is a diffcult situation to cure....the plaque is embedded in the septum like a fat Tick! I will give it a few months the VED is no big deal to me to use.....I will be glad to hit the C cylinder to see what that does, but that is still almost a month away.....
Rico
There is a new abstract available on PubMed. It is #17081219. The title is: Defining The Clinical Characteristics of Peyronie's Disease In Young Men. It is from the Journal of Sex Med of Nov 06. www.ncbi.nlm.nih.gov/entrez/
Quote1: J Sex Med. 2006 Nov 1; [Epub ahead of print] Links
Defining the Clinical Characteristics of Peyronie's Disease in Young Men.Deveci S, Hopps CV, O'brien K, Parker M, Guhring P, Mulhall JP.
Department of Urology, Weill Medical College of Cornell University, New York Presbyterian Hospital, New York, NY, USA.
Introduction. Peyronie's disease (Peyronies Disease) is usually seen in men in their fifth decade of life. Aim. In this study, we investigated the characteristics of the disease in young men. Main Outcome Measures. The demographics, clinical features, and associated comorbidities of the patients with Peyronies Disease were retrospectively reviewed. Methods. The findings were compared between men with the disease who were under 40 years of age with those over 40 years. Statistical analyses were conducted to define differentiating features between these two groups. Results. Of the 296 patients, 32 were under the age of 40 years and 264 over 40 years. The mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups. Fifty-six percent of the patients under the age of 40 years and 75% of the patients over this age presented with curvature (P < 0.01). Thirty-seven percent under 40 years and 12% men over 40 years had more than one plaque at presentation (P < 0.01). Dupuytren's contracture was seen only in patients over 40 years of age. Pain at presentation was found in 75% under the age of 40 years and in 65% over 40 years (P = 0.03). Trauma history was found in 18% under 40 years and in 5% over this age (P < 0.01). Statistical significant differences were found between the groups under and over the age of 40 years for hypertension (P < 0.01) and dyslipidemia (P < 0.01). Diabetes was noted in 50% of the patients under the age of 40 years and in 18% of the patients over this age (P < 0.001). Multivariate analysis of conditions associated in men with Peyronies Disease under 40 years of age showed statistical significant differences for diabetes (P = 0.015), presentation within 6 months (P = 0.004), and having multiple plaques (P = 0.008). Conclusions. Young men with Peyronies Disease are more likely to present at an earlier stage of the disease, to have diabetes, and to have more than one plaque at the time of presentation.
PMID: 17081219 [PubMed - as supplied by publisher]
[/size]
source: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17081219&query_hl=1&itool=pubmed_docsum
An interesting study abstract. Evidently, the full study isn't available yet.
Can anyone conjecture what is meant by "...the mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups...." Are they referring to the active phase of Peyronie's only? To me, "duration" indicates a beginning and an end, which for most of us is not the case.
Does anyone have any ideas?
Quote from: scott on November 05, 2006, 05:43:57 PMCan anyone conjecture what is meant by "...the mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups...."
Apparently some of the subjects had Peyronie's Disease that lasted for Negative Two (-2) months. A duration of negative time seems significant. I'm sure Einstein would have been interested in those aspects of the study. Perhaps we should contact Stephen Hawking; he might be able to make sense of it.
Someone please forgive my cynicism.
Myr, your cynicism is appreciated and forgiven lol ;D
I guess the study report composer got caught up in study-ese. I think a mean duration of 2 to 4 and 6 to 8 months was intended, but study-ese demands large, multi-syllabic words and characters like plus and minus. With a max of 8 months mean duration they've got to be referring to the active stage.
Tim has helped us a lot with Study-ese translation. Maybe he can help out a little with this one.
Does anyone understand how plaque moves, mine went from mid dorsal to the right about a half inch, how is this possible?
Rico
Rico,
Have you ever looked at these photos? They are the pictures of the man's chest. They are on the attachment in the 2nd post. https://www.peyroniesforum.net/index.php/topic,155.0.html
If you study these you will see a keloid or hypertropic scar that has a leading edge that is rolling across his chest like a wave. The leading edge is raised with flat scar tissue left in its wake. After putting some though into it, this is one of the most captivating photos I have seen. Especially when you realize that it started from only infected hair follicle on the chest. I am convinced that this typical advance of hypertropic scaring is what happens to our tunica to one degree or another. The scar starts, leaves the damaged area, gets no signal to quit, and rolls across completely healthy tissue, appearing to move. In fact the place where you felt the plaque before was the raised the leading edge of scar tissue. It reduced in size but that area is still scar tissue, just not raised scar tissue. It is now the flat scar tissue left in the wake of the leading edge. As the leading edge advanced, it feels like the scar tissue moved from one place to another.
I know this is not good news and I do not intend to discuss a disturbing phenomenon callously. It is just that I have discussed this many times. In fact I have covered it before with you but you did not have something personal going on for it to grab your attention then like you do now. I think this single simple concept does more to visually help one understand the progression of Peyronies Disease than any other, IF they will read it, look at the picture, and ponder it. It explains that an injury to one spot on the penis does not mean scar tissue will not form on the opposite end of your penis where there is no damage. It explains why plaque seems to move. It explains that the older scar tissue naturally reduces in size. This is why many people mistakenly think they are having an impact with a treatment because they equate reduction in plaque size as reversal when it is normal maturing of the scar and it does not improve the bend or other deformity.
Good luck my friend. You are on the right path, just keep doing what your are doing and do not panic. I think you will see improvement.
Hawk, thanks for the dose of reality. I too am convinced that what we are dealing with in terms of Peyronies is degenerative disease in the truest sense. The term 'degenerative' means that without intervention it tends to spread. It is like cirosis (or scarring of the liver) or emphasyma (or scarring of the lung) or alzheimers (or scarring of the brain), or I could name a number of other such disorders. Thats why I think it is imperative to get a handle on things like inflammation, free radicals, tgf-beta-1, arginase, etc. in order to make headway against it. It takes a systemic response to stop this degenerative pathology from progressing slowly but surely to its logical end. All of these types of diseases follow a lot of the same biological pathways and I think there are similarities in the types of things that provoke them. As you rightfully indicate, perceived progress is of little value. We need to identify and recognize those things that truly wipe this thing out. Not an easy task. But this forum is a huge resource toward helping to achieve just that.
- George
Hawk
The description of plaque as a flat area with two raised wavefronts fits my case exactly. Well observed - thanks.
Percival
I haven't heard anyone mention of pain when you touch the lesion. All of my lesions are very sensitive to touch and painful, not because of curve just when touched. They have only been there for a few months now. I want to make sure i'm not the only one where this is the case. Maybee i have penile cancer instead? God, i hope not.
So Frankie...just when are you going to see a Urologist about this??? We here on the boards can help with a lot of things like suggestions, a 'shoulder' to cry on, and even a place to vent our frustrations, but we're absolutely no substitute for a good (emphasize good) Urologist when it comes to diagnosing our actual maladies.
Bottom line -- get yourself to a Dr!!!
OK, I'm off my soap box now.
Thought this would ease your mind (maybe many men's minds).....great alliteration ;). I hesitate making such a large post, but, will go ahead. The thought of penis cancer, yes it crossed my mind, too, is frightening. Let's put that fear to rest.
QuoteSigns and symptoms
The first signs of a penile cancer are often a change in colour of the skin and skin thickening. Later symptoms include a growth or sore on the penis, especially on the glans (head of the penis) or foreskin, but also sometimes on the shaft of the penis. There may be a discharge or bleeding. Most penile cancers are painless.
Sometimes the cancers appear as flat growths that are bluish-brown in colour, or as a red rash, or small crusty bumps. Often the cancers are only visible when the foreskin is pulled back.
These symptoms may occur with conditions other than cancer. Like most cancers, cancer of the penis is easiest to treat if it is diagnosed early, so if you have any worries it is best to go to your doctor straight away
Source: http://www.cancerbackup.org.uk/Cancertype/Penis/Penilecancer
QuoteWhat causes penile cancer?
Scientists currently believe that penile tumors are caused by cancer-producing effects of secretions that become trapped within the foreskin if they are not washed away on a regular basis. It is not surprising, therefore, that this particular malignancy is extraordinarily common in South and Central America, as well as other Third World countries, where public health and personal hygiene often are lacking. Also, circumcision, a practice that could improve hygiene, is not regularly performed. In the United States, penile cancer is a relatively unusual cancer, probably due to the country's superior sanitary and hygienic conditions along with commonly practiced circumcision. However, scientists are currently studying other causes of penile cancer, particularly the role of human papilloma virus (HPV), which already has strong links to cervical cancer. Antibodies to HPV-16, a specific type of papilloma virus also implicated in cervical cancer, have been found in many patients with penile cancer.
How is penile cancer diagnosed?
Unfortunately, early diagnosis of penile cancer is often missed because it is so rare in the United States that general physicians and even urologists may only see two or three cancers in a practice lifetime. Also, patients are often reluctant or embarrassed to call attention to their genitalia and may be afraid of surgical procedures or treatment of the penis. But the earlier the diagnosis, the more effective the therapy and the better the chance for cure. If diagnosis is delayed and the disease progresses, therapy may be less successful and more disfiguring. So, it is very critical that any skin erosion, ulcer, sore, irritation, discoloration that is noticed on the foreskin, the skin of the shaft of the penis or the surface of the head of the penis be brought to the attention of the physician by the patient and be promptly evaluated. Chances are good that most such lesions are linked to a bacterial or fungal infection or even an allergic reaction, all of which will respond readily to antibacterial or antifungal ointments and creams. But growths or areas that return or do not heal must be considered malignant until proven otherwise. The appropriate evaluation includes biopsy where the tissue is removed for examination under a microscope. If a precancerous or cancerous condition is found, prompt treatment and systematic, regular follow up are very important.
How is penile cancer treated?
Early detection and identification of penile cancer are very valuable because the treatments that can provide successful outcome are indeed low risk. If the tumor appears on the skin surface, your urologist may be able to treat the problem with a topical cream that has minimal side effects. If the lesion is larger, but still limited to about pea-size, a small local excision or a type of surgery that continues to shave layers of abnormal tissue until normal tissue is reached (Moh's surgery) may be performed. With these procedures, there is essentially no loss of form or function to the penis. However, careful follow up is critical to identify early recurrence. In the removal of these small lesions, it is very unlikely that cancer has spread to lymph nodes and, therefore, removal of the lymph nodes is usually not necessary. With larger lesions, it is necessary to remove greater amounts of tissue and also to consider removal of the draining lymph nodes in the groin in order to achieve a cure. In these circumstances, a combination of surgery, radiation and chemotherapy may be necessary. It is also important to note that external beam radiation is an alternative therapy, specifically for small lesions. Again, the critical importance of early detection not only ensures a better outcome for the treatment supplied but also provides more treatment options that can be applied.
What can be expected after treatment for penile cancer?
Your post-treatment experience will be directly tied to the stage of your cancer when it is diagnosed. Cure is almost certainly ensured when lesions are detected early. But it is less certain as the tumor becomes more advanced. Treatment is also increasingly more debilitating. Since your penis is readily accessible — you can visualize it easily and you touch it regularly during urination — you can help yourself greatly in detecting early disease by reporting any lesions that you see or feel. While patients at greatest risk are those who are not circumcised, every man should be on the lookout for penile lesions as they need prompt attention.
Is penile cancer contagious? Can I pass it onto others?
Until recently, the general consensus was that penile cancer was caused by chemical irritation and there was no concern about transmitting it. But recent data have implicated the HPV in both penile and cervical cancers. There appears to be increased incidence of these cancers in the spouses of people with this sexually transmitted disease. Thus, while penile cancer is not directly transmissible, if you or your partner has HPV, you need to use protection during intercourse, be aware of any lesions, and, if you are the woman, have frequent cervical examinations. Not only are efforts to eliminate or minimize the infection important but so are discussions with a urologist or other specialist about its link to penile cancer.
Does an operation on the penis mean that I will be unable to stand to empty my bladder?
If your cancer is detected early, the surgical procedures should not impact your ability to stand when you urinate. When the cancer is more advanced, the required surgical procedures may require you to urinate in the sitting position.
Will treatments interfere with my ability to have sex?
Early detection and minimal surgical procedures should not interfere with normal sexual function. More extensive procedures might, however.
Should all male children be circumcised soon after birth to prevent penile tumors?
This question creates much debate. Some experts believe that sexual sensation is diminished after circumcision, even though evidence points to a lower incidence of urinary tract infections and penile cancer in men who have had the procedure. Parents should discuss the risks and benefits of circumcision with the child's doctor.
If a male has not been circumcised soon after birth, will later circumcision as a teenager or young adult protect him from penile cancer?
There is now evidence that circumcision soon after birth is the most reliable protection from subsequent penile malignancies. A procedure performed in young adults does not have nearly the protective effect as when it is done in infants. Population studies suggest, for instance, that the incidence of penile cancer is: extraordinarily rare in Jewish males where circumcision at birth is an accepted ritual. more common in the Muslim population where circumcision at puberty is the established ritual. But it is not as common as in those individuals who have never been circumcised.
Source: http://www.tc-cancer.com/penile-cancer.html
Frankiewa,
I do agree with most of my previous posters and fellow peyronies sufferers, I highly doubt you have cancer of the penis, but getting to a urologist can't be a bad thing, I didn't want to go either but made myself go to 3 different ones.
Penile cancer is very very rare, less than 1% of men get it. I will clarify some of the previous statments posted about circumcision and penile cancer cause there are many myths put out there, by many different groups, some with a very sick agenda that I won't even get into at this point. I did a little research...
"The American Cancer Society does not consider routine circumcision to be a valid or effective measure to prevent such cancers... Penile cancer is an extremely rare condition, affecting one in 200,000 men... Perpetrating the mistaken belief that circumcision prevents cancer is inappropriate.'' 10
The American Medical Association, in a July 2000 report, states, "... because this disease [penile cancer] is rare and occurs later in life, the use of circumcision as a preventive practice is not justified." 2
I think we can trust our conservative leaning AMA in that if there was a benefit from circumcision they would advocate it. I would go with their judgment on this subject since they are the experts.
I guess if one plans to be unhygenic or not shower ever, this could lead to cancer, but I think most of us here on the forum probably shower daily, penile cancer is not a concern that crosses my mind and if I were you frankiewa I'd try to focus on a treatment protocol for peyronies. Get to a urologist though and get diagnosed, it will ease your mind to hear him say "you don't have penile cancer."
ComeBackid
Guys,
These posts are way off topic of progression of Peyronies Disease. In fact they are off topic of Peyronies Disease.
http://drjoea.googlepages.com/penis
First post: Question please about my condition: is it Peyronie's condition or not?
About a year ago I began to experience slight penile and testicular numbness. Doctors said that it was probably due to some nerve or other being tweaked and would resolve. However it has steadily worsened and the head in particular is very numb with only mild feeling. About a month ago I began to notice some differences both in texture and color with some small white spots and what appears to be patches of slightly darker color on the surface of the skin (the top of the head is dark and has a dark sheet across it while the rim of the head and most of the underside is a much lighter color, kind of whitish-blue).
Over the last two weeks it has become the worst. Usually it is fairly hard when flaccid, but the unit does not increase in size. During erections the tip of the penis does not usually harden. I can't feel scar tissue but it feels like the inside of the penis (just a few millimeters down from the surface) is very gummy. It is still pliable but it feels like I have a gummy worm inserted down the length of the shaft (which expands during erections). I usually only get erections at night because this has influenced me greatly psychologically. The penile numbness is constant (especially the head) but the testicular numbness seems to have gone.
I would appreciate an answer on this - I am only 20 and this is understandably very worrisome to me. The doctors are not helping!
I remembered the symptoms you mentioned and immediately went in search of info. This should give you the basic facts. The cause may be something else acting in a similar manner. Hope this helps.
http://www.emedicine.com/sports/byname/Bicycle-Seat-Neuropathy.htm
The symptoms don't sound like Peyronies Disease. But, your physician is better equipped to judge that. See a Urologist at this point.
google: pudendal nerve entrapment
Good Luck!
Thank you for your quick reply.
I went to the link (the pudendal nerve page on wikipedia) and I'm not sure that fits my symptoms. I've never really felt any strong pain (the pain is just a very mild "soreness" like that after an erection) or anything really other than numbness. The numbness has steadily increased since I noticed it first last October (13 months).
I will probably be going to a urologist on Thursday.
Hmm. . . if it's not Peyronie's I wonder what it is. Just in case I am starting a better exercise program and eating more vegetables (actually I wasn't eating any vegetables or exercising at all, so anything is an improvement. :) ). I guess I'm lucky, though - I went through the horrific depression and worry last year when it went numb so I'm able to get through this very logically at this point.
I'd like to check the size to see if it has degraded. Flaccid size appears to have degraded (not in length but in circumference - when I stretch it it gets tiny. I haven't had a daytime erection in about a week because I'm getting over the flu.
The part about the head not getting firm during erections worries me the most because it suggests that the problem is deeper than just a nerve.
The amount of pain can vary. When symptoms are listed in a publication, they are in the most general terms. Very rarely can you go down the list and check symptoms. Think about a common cold. Sometimes it hits you in the nose and sometimes it hits you in the chest. You could describe two different colds you've had and they would sound like two different "diseases" :). That's why even doctors go to doctors. You just need that knowledgeable unbiased observer.
Get treated for the depression, too. I'm sure you know about the downward spiral. Depression feeds itself and makes you pay attention to unimportant things. I use Wellbutrin...no unwanted sexual side effects.
Actually, the depression has been gone for quite some time. I haven't felt sad about it for a long time.
Now - I have a healthy dose of intellectual worry, but it's strange. Before I was in a horrific pit of sadness for two weeks, the worst that I've ever felt in my entire life. That's not an exaggeration. It was mostly worry that it was going to fall off or just get number and number until I couldn't feel anything.
Once I realized that that wasn't going to happen, I made it a future plan to see a doctor once I got back to the States. I still worried several times a day (such as when I used the bathroom or whatever) but it's not the same kind of worry. I'm through all the stages now (never reached anger or bargaining and skipped directly to acceptance).
One thing that cheers me up a little is people's statements that considering my age (20 with birthday in May) there's a good chance it could just revert itself as long as I live healthy.
I was able to accept it as a possible nerve condition until the things that cropped up a couple weeks ago (soft tip during erection and gummy tissue underneath surface of shaft), and should theoretically be more worried than I ever have in the past, but it seems I've used up all of the sadness and am just now looking at it more logically.
I woke up with a bent penis on erection after an injury near the head. There was a bit of a bend for awhile but this went away. There has been some shrinkage in this area near the head. However, during the time when it was bent (still is curved off to one side in flaccid state) I twisted the penis around while in flaccid state to try and straighten it out one time. I did this not in an insane reaction but a reaction to correct it, and it was not a very strong force. There was a slight discomfort at the time. However, a few weeks later a lump appeared in the area where it hurt.
My question is, this lump has been here close to 7 months. The lump has not really shrunk to a nodule like some people here. There was some tightness with the penis in terms of mobility in moving it in the area, but I have since had no bend from this lump. To anyone here who has had this kind of lump, which has caused no pain to me on erection or otherwise, will this lump progress to a nodule which will constrict the penis, or will it dissappear as some have as of now. I'm 31, so I assume age will benefit its healing.
Serpicor,
You didn't really ask a question. You made an assumptive statement that everything will probably get better based on your age. Sorry, but that's not so. Maybe, it will because it often does resolve spontaneously. But what if you were like me and it didn't? Wouldn't you wish you had done what you could early? Peyronies is a progressive disease that often goes through several acute phases through-out someone's life. Important factors in progression seem to be general physical health, cholestorol, diabetes, diet/exercise, and stress. (BTW folks I learned that here! :) )
Sounds to me like you are in denial and are wishing that it will go away. I remember doing the same thing for a while. But if I had a time machine, I would do some things different.
I would see a urologist promptly. I would find one that would help me set up an aggressive non-surgical treatment with the hopes of stopping the diseases early. In your shoes, that's what i would do.
---PJ
Always see the Urologist. Get your list of questions (this site will help you with those) and truck on down.
Good Luck and let us know what he/she said.
Liam
I did see a urologist and he prescribed potaba at the time. He said it was early-stage peyronie's. I stopped because of the cost versus benefit in terms of money after a month. The stuff is like $300 a month and if you're not on insurance, that's a significant expense for questionable benefit. I imagine it was having some benefit in terms of keeping the lump down in size, and I may go back on it. The only other issue with me was that during the time I had no stomach discomfort, but if I didn't take the pills with some form of sugared substance, you would feel tired from the hyperglycemia. The issue with me was that it was such a low order force in my mind that the lump was not of a severe order so that I wasn't sure of much benefit from using the stuff.
Admittedly Potaba does not have a good track record and you clearly do not have good insurance. (My rant against the injustice of health insurance has no place here so I will forgo) Here are some facts:
1. Prompt treatment of peyronies is the most effective. You have a window of opportunity.
2. It could go away and does for about a third of the people. It could get worse.
Not meaning to be alarmist, but you are rolling dice. You are betting money or your penis. I wish you the best. I wouldn't want anyone to go through what I have had to.
---PJ
If you read on the other forum, someone mentions to Dr. Levine about potaba, he says that in his opinion he doesn't believe it does anything, and if you wanted to use a oral medication for your peyronies he would suggest pentox or arginine.... I do believe he is more on top of this than other Urologist, and this is because it is his primary field....my urologist prescribe potaba also, I didn't take it, and when I gave him Dr. Lue's and Levine reports he prescribe the pentox or pav pentox/cilais/arginine.... pentox is much cheaper also than potaba and you don't have to take the cialis with it...one could do pentox/arginine if he choose, or ginkgo and arginine would be another choice along with opc's....
Rico
I believe potaba stops the progression of peyronie's, while also softening the plaque because in a recent double-blind study only 1 out of 35 experienced a worsening of the bend, whereas 13 out of 35 experienced a worsening condition on placebo. I'm not sure about the pentox/arginine/viagra. But thanks for shocking me into thinking about taking something for this. I'll have to tell a funny one about going to the doctor today. I went to one of those walk-in clinics, not urology, and asked for a prescription for potaba. I told the doctor that a urologist prescribed it in another city. He asked me about whether it was tablets or capsules. I told him capsules and that you take 24 pills a day, 500 mg 6 tablets 4 times a day. He said ok, and left to room to check on it, since he hadn't heard of potaba. I could hear him on the phone outside with the pharmacist, saying yeah, you take 24! pills a day. Then I heard him say good luck on him finding a prescription in the city in a joking manner. When he came back, he said at first he didn't believe me and thought I was trying to overdose on something. He asked if I had any liver or kidney problems or diabetic since it causes hyperglycemia sometimes, and I said no. So he wrote the prescription. It cost $210 at Walgreens for 720 pills, a one month supply, which is not too bad in my opinion. Honestly, when I was on the potaba, it didn't affect my stomach at all, and I think perhaps that people in the past were talking about the tablet form of potaba, which is what people would take, and that the capsules are better, which is what I was on.
PJ,
You mentioned that
Quote from: PJ on December 21, 2006, 09:29:54 AM
2. It could go away and does for about a third of the people.
I am not sure if our information radically differs, or if I misunderstand your use of the term "go away". Based on sources that I consider to be the most reliable on this topic, the spontaneous resolution rate of Peyronies Disease is 7% - 15% and most place it at the lowere end. I am sure I have read that Levine would go so far as to say that those that resolve are suspect for not actually being Peyronies Disease.
While I question any implication that Peyronies Disease never resolves, I am sure the overall rate would be closer to 10%.
I have read that if the lump or scar is 20 millimeters or less there is 100% resolution of the scar in a particular study, and I know there was no drug, maybe it was just vitamin e, but I'm not sure if it was even that. If the lump was greater than 20 millimeters only 20% resolved without medication. My lump is probably 25 or 30 millimeters so it stands to reason to use some type of medication.
Serpicore,
Welcome, and thanks for the posts.
I hate to be the bearer of bad news, but we mut educate ourselves. We can only do that with accurate information. I have seen a couple posts now that have made misstatements about Peyronies Disease and spontaneous resolution. This is no wonder since the Levine survey showed that even most GP's and uro's are ignorant on this issue.
Quote from: serpicor on December 22, 2006, 03:29:22 PM
I have read that if the lump or scar is 20 millimeters or less there is 100% resolution of the scar in a particular study, and I know there was no drug, maybe it was just vitamin e, but I'm not sure if it was even that. If the lump was greater than 20 millimeters only 20% resolved without medication.
I know of NO such evidence based study, and in fact, every bit of documented information soundly refutes a resolution of Peyronies Disease anywhere near this rate. The truth is that
every urologist with an expertise with Peyronies Disease refutes such numbers as as being
completely false.
Thanks for correcting me Hawk. I looked to see where I got that impression and it turns out it was the 'pamphlet' I got from my uro when I was first diagnosed. It quoted no studies, soI don't think it can in any way claim to be an authority. I am sorry I claimed to have learned it here, that was me misremembering.
---PJ
No worries man, there is so much information out there on peyronies and treatments, all the facts and data can blurr together. I agree with hawk on the percent that resolve, probably somewhere around 10%. We have seen many men come here, and off the top of my head I can't think of one that had complete resolution and left. I think sometimes when numbers like 33% are thrown out like that, it makes some people think "I don't have to do anything my case will get better." Hence they do nothing and let it go only to see their condition get worse. For me I was told to take vitamin E which I took for over a year, it did nothing. Another good point you bring up- always ask for or read a study to back up a statment. I'm actually concerned if some pamphlet is telling guys that 33% of peyronies cases resolve on their own- this is very misleading in my opinion, I would love to see their study to back up that claim. Anyway this was a good exchange, especially for newbies who are thinking of maybe doing nothing for their disease.
ComeBackid
I know it doesn't sound like it could be true, but here is the study correlation relief of symptoms with plaque size:
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1442-2042.2006.01270.x
Here is another study correlating treatment with plaque size: http://cat.inist.fr/?aModele=afficheN&cpsidt=846706
In this case, they used medication, but probably the same effect would have occurred on those not using medication in the previous study, at least for the smaller plaque size. They mention 30% resolution for 10-20 mm and greater than 20 mm, so it's a bit higher percentage than in the no-treatment study I posted before. It would be interesting to see what effect the pentox, arginine, viagra is having on those with the larger plaques.
Peyronies Disease is misdiagnosed 30% of the time when nodule is small.
This is my opinion. Nothing More!
Liam
I excitedly got out my ruler with metric divisions on it. If I am reading it correctly, 20mm is about the size of my thumbnail. My plaques are nowhere near that size, and I am taking not only vitamin E, but L-arginine and pentox, as well. So, I should look for fairly rapid resolution, right?
Tim, do you have access to the full text of these articles so we can see what's going on?
I have a stupid question what will Viagra do for Peyronies Disease other then help with an erection? I don't have that problem just the 90 degree curve. My scar is indented causing the bend.
I also want to know if anyone knows of a medication that may help that is not an anti-inflammatory? I can not take anti-inflammatorys as i had a back fusion and need th inflammation for bone growth. All the uros want to operate and give no other options. My Pain is gone now with erections. Dose this mean the progression is done?
JTL4661
My anecdote as far as pain versus progression:
Pain lasted approximately 4 months.
Progression has been pretty steady for about 3 years now.
About the only conclusion that one may draw from this is that progression may in some cases continue long after pain resolves. Course we have no idea about what an 'average' case should expect.
---PJ
jtl,
Viagra was initially developed as a blood pressure medication. It also happens to facilitate erections for people with ED. Since there is a lot more money in ED drugs than in BP drugs, further development on Viagra as a BP drug was halted and it was relabeled as an ED drug. The point here is that drugs like Viagra have a lot more going on than simply facilitating erections. In the case of Peronies Disease, they actually help to inhibit the scarring process and inflammation associated with Peyronies by increasing NO availability in the tissues affected as well as other benefits in terms of altering body chemistry. Viagra is a powerful anti-inflammatory since it also inhibits PDE-4 (mediator of inflammation) as well as PDE-5 (mediator of Nitric Oxide). It is basically inflammation that is one of the main factors driving Peyronies. I would certainly question the effectiveness of surgery if inflammation is not going to be controlled during recovery. Peyronies is basically a disease involving scar tissue and surgery INDUCES scar tissue! So you are in a catch-22. In order for the bones to properly fuse, the cartilage separating them needs to be eaten away through an inflammatory process. It is the same inflammatory process that is exacerbating your Peyronies. Given the choices, if I were you, I would be VERY cautious. The last thing you want to happen is to have a failed back surgery. You also do not want to go through a Peyronies surgery that leaves you worse off than where you started AND that can happen. So my advice would be to do NOTHING for your Peyronies at this point and wait out the time for your back to heal (6+ months from date of surgery as I understand). Only after that time would I consider taking action against the Peyronies. At that point you should be able to attack the inflammation (and other factors) head on, without risking messing up your back surgery. I know that things like Pentox are not considered to be anti-inflammatories, but I certainly wouldn't be taking it, not knowing the effect it might have on a condition that depends on exactly the opposite types of effects for success. Perhaps others can also indicate their perceptions here, but my feeling is that at this point your Peyronies probably is not going to get a whole lot worse during the time it takes for your back to heal and I would in NO WAY allow myself to be rushed into a Peyronies surgery under these circumstances.
- George
I've seen some people post about the VED. Now I saw on a website, don't recall, about a doctor who used the VED on a couple of occasions, and he said it permanently (in his words) made his penis not as firm through damaging the penis. He also mentioned that others had this experience, and he wasn't talking about overpumping, etc.
Responses should be under the VED topic.
Thanks
Liam
Dear JTL
I would go back to your orthopedic doctors and explain - carefully and completely - what the issues are. Inflammation is not a prerequisite for new bone growth, and anti-inflammatories do not stop it dead in it's tracks. I am in fact uncretain what the problem is - it is not a complete contraindication, it is a RELATIVE contraindication to use of NSAIDS ( recent surgeries on the back) - and also, that may have been more relevant in the immediate postoperative period than more than am month later.
The best way to be certain is to talk to them about it - embarrassing or not.
Tim
Hi, I am just wondering if anyone has experienced progression similar to mine.
it has been 20 months since my initial injury (prolonged sex/masterbation while not fully erect). I have long cord-like things running from the base to the tip (along the top of my shaft only). The cords are thick at the the top and get thinner towards the glans.
I have no curvature or very slight but my erections are not as hard anymore and glans does not inflate fully. My girlfriend said she noticed this...
My main symptom is daily pain... almost constant. It is a burning/fire sensation near the top of the shaft. It is really unbearable and nothing seems to make it go away.
I feel like the pain died down or went away from almost a year and just kicked back up again in the past 6 months.
Is it normal to have pain this long after an initial injury?
I am taking ALCAR/Vit E
I thought I would comment on what my injury looks like, which is situated a bit behind the head on the shaft. While I was on grape seed extract and vitamin E, it made my erection larger than normal. I noticed that there were two small x's where the inflammation was (maybe 2 or 3 millimiters in length). I assume these are tears that are healing. There has been shrinkage on this side near the head. The unusual thing is that the last time there was inflammation, I noticed the red inflammation went around the shaft near the head, resulting in a few millimeter shrinkage. The only thing I can think is that the penis somehow knows when there is pressure on one side, so it begins to contract and shrink in an effort to maintain a functional penis. However, by not masturbating, inflammation episodes have vanished, although there is still pain.
ThisSux-
Do you drink alcohol? I noticed that alcohol would make the lump at the base of my penis painful. The only other thing would be masturbation/sex, which could irritate it. I guess these cords are not associated with red inflammation on the shaft?
ThiSSux-
Here is a link that is similar to what you're describing:
http://www.biospecifics.com/forum/readThread.asp?forumID=14&threadID=1372
They mention fibrosis. Pentox and Vitamin E together has been shown to reverse fibrosis, while neither one alone showed an effect. I have heard the VED permanently weakens the erection, so I wouldn't try that.
By the way, you can search for chords using the advanced search in google. Type in www.biospecifics.com in the domain window and chords in the keyword.
I was posting here about soy isoflavones. I read that soy isoflavones is actually a platelet aggregator rather than platelet thinner, and this was my experience over the couple of days I used it. Whereas vasodilators would make my old tendonytis a bit loose and "hot", soy isoflavones made it tight and cold. If this is true, it could be disastrous for Peyronie's if the penis needs a normal flow of blood. On the other board, www.biospecifics.com, there was a poster there who took soy isoflavones for years, stopped for a month, and saw a drastic worsening of his condition. It was actually a soy diet that said it is a platelet aggregator, but my experience was that the soy isoflavones itself was a platelet aggregator, so it's not definitive. What is stated below is an older post than what is here at the top, which is the newest update.
Also Vitamin E plus fish oil (omega-3 and omega-6): Vitamin E is an important regulator of prostaglandin E2 (PGE2), which plays a key role in inflammation and diseases associated with inflammation. Specifically, vitamin E inhibits cyclooxygenase-2 (COX-2) enzyme activity that promotes inflammatory response by catalyzing the synthesis of PGE2. Finally, vitamin stabilizes and prevents the oxidation of the omega-3 and omega-6 EFAs that are needed to generate anti-inflammatory PGE1. http://www.freepatentsonline.com/7029712.html
Also, I have read a soy diet increases SOD activity and Nitric Oxide: http://www.fasebj.org/cgi/content/abstract/05-4008fjev1
I am stopping the pentox (provisionally) and will keep you updated if the effects of soy, fish oil, vitamin e, and I will possibly add mangosteen juice mirror pentox.
Update: I am only taking soy isoflavone right now. It does not have the microcirculation effect that inflames my knees or lower legs like pentox, acetly-l carnitine or grape seed extract. While taking pentox or acetyl-l carnitine plus vitamin e, it temporarilly makes the plaque appear smaller. The soy isoflavone does not have the same microcirculation effect, which I do not know is necessarilly bad. It eliminates the pain. It is a very pleasant feeling while taking soy. Pentox had a bit of a stimulant effect. There must be some type of antihistamine effect of soy isoflavone as my nasal passages are clear. I am taking the gnc soy isoflavone concentrate.
Update 2: The soy + Vit E resulted in a very hard spontaneous painful erection on falling asleep so I am going to eliminate one or the other and continue taking a multivitamin (men's health) and hope that natural healing takes place.
This Sux,
I note that no one has answered your questions - probably in part because of some slowing down of posting activity with the holidays.
I also think that symptoms like yours are unusual. A cord like thing is not uncommon - I have a thickening along the dorsum of the penis that limits it's ability to fully straighten. This feels cord like and is palpable when I am soft. Additionally, I have had intermittent pain off and on for yers, but the main symptom had been an aching feeling that heralded a worsening of the curve. For me it has always been glacially slow until the last two year, when the new dents appeared, and the pain with erection became noticable.
If you have continual pain, then you need to be reexamined for a cause, If you have pain with erections, then it is more likely that your Peyronies Disease is still in an "active" state, and more aggressive anti-inflammatory therapy might be of value to you. For me, I have personally found that 800 mg of Advil 2-3 times a day for two weeks will break a pain/inflammation cycle for a good long time. Do not exceed 2400 mg a day of advil (ibuprofen) or you can risk kidney failure.
Tim
Hi all,
Something has been concerning me lately and I did some research and thought I possibly could have peyronies, I dont wanna sound blunt but 2 months ago this girl sucked really hard on my penis but not for long(a second or 2, she wanted to show off), it didn't hurt afterwards but around that time(next day or 2 days later) I noticed what seemed like a vein like vessel running down the left side of my penis wich would be visable when erect, it was not a vein, I saw a urologist and he said it was a thrombosed vein, I had a doppler and it came back normal, I was guessing it was either a lymph vessel or a nerve, during this time when flaccid my penis would rest on its right hand side wich I would always notice when going to the toilet.
The vessel has settled down back to normal although I have noticed the "head" of my penis is slightly crooked, when I am erect or semi-erect the shaft is straight although the head sort of twists off abit to the right, there is no pain and I can't feel any inconsistancies in firmness or what would apear to be calcification. I am wondering if this is peyronies?
Thanks.
Crook,
Chances are you don't have it. You are probably noticing things which were already present. Your condition just has you paying attention to that region more. Do follow up with your urologist.
This post dovetails with the discussion in the VED topic. :)
Liam
Liam,
I respectfully disagree wth what you said for several reasons. First, I think most young men pay a LOT of attention to their penis, and if something chnages with it, they notice it. I doubt very much that any man who notices something is noticing something that was there all along.
Second, although we can discuss the requirement of a palpable nodule for the diagnosis of Peyronie's Disease until the cows come home, it does seem that some men develop either dents or minor deviations based on smaller than palpable scarring. This new deviation of the head of his penis described by Crook, following an injury he can remember (which is more than someof us can recall) seems like Peyronie's to me. Also, the negative ultrasound would have ruled out the major considered diagnosis - a thrombosed vein - anyway (and, don't forget, the veinous damage seems to have resolved).
Crook, I would consider returning to the urologist, and pointing out that there is a new finding of deviation of the head of your penis when erect. It might lead him to consider treating you differently.
Tim
Crook and Tim,
Although we disagree on the probability of the diagnosis, we agree on the advice. A follow up is called for.
It seems your urologist is nothing short of thorough in ordering Doppler ultrasonography (I think most would say give it a couple of weeks and come back to see me and if the problem is still there, we'll do some tests). He was taking your case seriously. But, follow up. Your urologist seems determined not to miss anything. :)
If everything "works", don't worry. Don't ignore symptoms. But, don't worry.
As far as noticing things for the first time, I think, based on personal experience, it is entirely possible. Most of us have had our attention called to something that made us question something else. How many times have perfectly normal family members or friends asked if a bump or lump is normal? Having something wrong with your penis (prized possession that it is) would naturally make a man take a longer look. The normal convolutions of the penis offer myriad possibilities for concerns.
Liam
Thanks for the replies, this forum is very helpfull.
It is defenetly something new, everytime I goto the toilet I clearly notice it hangs on its right side.
I am changing urologists, I had to call up and ask for the doppler after doing my research. I am going to see a urologist but I feel as though I have to suggest to them what to do otherwise nothing gets done, is there a scan wich can detect peyronies? such as an MRI or PET?
I found this. It names the imaging techniques.QuoteAtypically located Peyronie's disease: imaging findings
Journal European Radiology
Publisher Springer Berlin / Heidelberg
ISSN 0938-7994 (Print) 1432-1084 (Online)
Subject Medicine
Issue Volume 5, Number 6 / December, 1995
Category Genitourinary Radiology
DOI 10.1007/BF00190941
Pages 669-671
SpringerLink Date Tuesday, November 16, 2004
Add to marked items
Add to shopping cart
Add to saved items
Recommend this article
Genitourinary Radiology
Atypically located Peyronie's disease: imaging findings
G. Helweg1 , F. Frauscher1, H. Strasser2, R. Knapp1, W. Judmaier3, D. zur Nedden1 and A. Reissigl2
(1) Department of Radiology II, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria
(2) Department of Urology, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria
(3) MRI Institute, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria
Received: 16 May 1994 Revised: 12 December 1994 Accepted: 10 May 1995
Abstract We report the case of a 44-year-old male presenting with deviation of the penis during erection. Upon physical and clinical examination the patient did not have the typical findings of Peyronie's disease, therefore he was admitted for further evaluation by conventional sonography, duplex Doppler ultrasound, endourethral ultrasound and magnetic resonance imaging (MRI). Endourethral ultrasound and MRI provided evidence of Peyronie's disease with atypical involvement of the corpus spongiosum and, in addition, demonstrated nonpalpable plaques in the septum of the penis.
Key words Peyronie's disease (IPP) - Endoluminal ultrasound - Magnetic resonance imaging - Corpus spongiosum - Corpus cavernosum
SOURCE:
http://www.springerlink.com/content/ukp6614284862302/Here is an interesting "Google" to try: ATYPICAL PEYRONIES Further posts on this subject would probably fit better under "Causes Of Peyronies Disease" topic.
Fascinating post, Liam!
It suggests several things, all of which cause feelings in me.
First, it suggests physicians who are willing to dig further because what their patient tells them did not easily fit into a traditional diagnosis. How often we hear of urologists who blow off the patient as anxious, or "probably normal", or - well, they are just blown off. And why? because the urologist may have had a preconception that Peyronie's always has a palpable nodule or placque, and that without it, it could not exist. never imagine that the physician may simply have been unable to palpate it! It leaves me frustrated at the intellectual laziness of the urologist who do not dig deeper to solve puzzles (*important* puzzles, too).
Second, it validates the reports we get from men who have developed a deviation or dent, but who report that their physician says "it's nothing". It leaves me sad for the men here who report such interactions, who must read such a report and wonder "why did my doctor not look that hard for the source of my problem?"
Finally, it reminds me that when we talk about Peyronies Disease, we need to be aware of the fact that any change in a penis' shape should be investigated. It should not be ignored nor should we assume that it will get better on it's own.
Tim
Hi Everyone,
I'm a new member, and just found your site today. After some vigorous sexual activity with my wife during the holidays, I began experiencing some pain on the top of my shaft just where it meets the head. Pain is still persistent, and is especially bad when I'm wearing any type of clothing. Small bump has developed there under the skin. Erections are hard to come by, and are much smaller than before.
I've seen 3 urologists so far, and they've all suggested a wait-and-see approach. However, I've started a full regimen of supplements (E, C, Bromelain, Quercetin, Paba, Gotu Kola, etc), and I'm starting on ALC and L-arginine tomorrow. In the mean time, the pain is brutal at work. I've taken 600mg of Motrin 3x/day, but that doesn't seem to help. One urologist gave me a prescription for Elavil for the pain. Does anyone have any experience with Elavil, or any other recommendations?
Thanks, and good luck to all.
cs65:
Elavil is a drug given mostly for epilepsy. It is part of a family of drugs used for treating those with this disorder. However, it is sometimes used as "off label" medicine for other maladys. Like in the case of Neuronten which is given to treat symptoms of "shingles" and its related pain.
It could relieve the pain, but I suggest that you be extremely careful with using it. IMHO, I would seek other pain meds to avoid the side effects of psychological drugs.
Old Man
I was given elavil for herniated disc. Pain kept me awake for 3 days. It helped me sleep to some degree. I remember feeling "hungover" the next day. I finally got some relief from an "epidural".
I agree with Old Man that I would prefer something else for pain, myself. But we are all different. Who knows?
cs65- Pain was aggravated greatly by clothing for me as well. Wearing different clothing practically eliminated that type of pain. I stopped wearing jeans and kakhis and wore polyester or wool pants. During the summer I was wearing the lightweight polyester bathing suits as shorts. Naturally, these types of clothes are comfortable as well. It sounds like your injury is similar to mine, and what stopped the progression of the disease and new pain was a complete cessation of sexual activity/masturbation of any kind. Hell, I tried using a lightweight sheet as it lightly hung and brushed across my dick for a few strokes and that caused an eruption of new inflammation and shortening. Making sure you don't do that as well as being very careful with how you sleep on it will prevent any further progression of the disease in my opinion. When the feeling in the dick is just like it used to be with no shadow of pain (could be 2-4 years ) then it will be safe to resume normal activities. Finally, I would be careful with some of these supplements. Some of these medications will cause the dick to swell in size from the extra blood, and that in my experience caused pain and probably influenced an acceleration of progression when I did masturbate on the very few times in the early stages. I would simply let nature take its course while taking a one a day vitamin. Also, what has happened probably is that you have one or two small tears of the tunica near the head as that is what I could see when my dick was inflammed- two small x's under the skin that were inflamed. Taking supplements that engorge the dick also would tend to stretch the area that is trying to heal.
When I do workouts with weights in the gym or just regular push-ups it seems that right after I get an annoying feeling in my penis, some dull feeling of pain. I can't see the connection how exercise could affect Peyronies Disease in a bad way, but I do wonder if anyone else has noticed this?
I wanted to revisit a topic that I believe warrants periodic review. How many of you, AFTER your disease has stabilized, have experienced any improvement in terms of increased penile dimensions?
I just want to challenge a concept here. I am not convinced that pain is ALWAYS a bad sign. Surely inflammation is bad and we need to do everything we can to prevent and suppress it. But pain can also simply be part of the general and healthy healing process. So I really don't know how much concern we should have regarding pain, but I suspect we tend to be overly concerned about it. If you engage in rough sex and that leads to pain, that is surely not good. But if you are not inflicting trauma, normal exercise for example, I can't see where pain would be a bad thing, in fact it might actually be a good thing. The only concerning issue is that you do not over stress yourself leading to an abnormally large release of cortisol.
- George
George,
Having been through physical therapy a few times for injuries and surgery, and having a fair knowledge of exercise physiology, i cannot think of many if any situations in which pain is a good sign.
Granted, rehab on a knee with an ACL graft can be painful, but the pain is not the point nor is it a good sign. No one is disappointed if you perform the PT with no pain (although I often accused the therapists of this;). It does not signify healing or improvement. Improvement is the result of increased muscle tone, flexibility, and wound mending. None of these things cause pain. Pain is a side effect of the activity that will, stretch, and strengthen. I have a lot of problem applying this concept to penile pain in Peyronies Disease. In Peyronies Disease, pain is the result of inflammation in the flaccid or erect state. It is not caused as a side effect of something that is fixing the problem. It is a side effect of the problem itself and as such, it is part of the problem.
Wasa, I have had a dull ache in my penis after long bike rides (which I attributed to the saddle) and after particularly strenuous exercise. I have never really known what to make of it, but it usually went away with a bit of quick tugging and massage. FWIW, I also noted that it always was accompanied by a severe case of "shrinkage". That implied to me that the ache was from the smooth muscles contracting that pull us up when stressed or cold. It has also been my experience that this happens to me under stress, with too much caffeine, and in a few other situations. I have learned to associate it (rightly or wrongly) with progression of my Peyronies Disease. My body tells me to do something - and what I did for many years was to try to get an erection ASAP by milking my penis hard. The ache would go away as the penis had to "relax" (getting hard is incompatible with shrinkage!) and for some reason, I "knew" that I was doing the right thing to prevent progression of my Peyronies Disease.
Just my two cents worth.
Tim
In response to what tdsc suggests below about ceasing sexual activity of all kinds for an extraordinary period of time, I'm wondering what the experiences of people who've tried this have been with regard to the semen/"fluid" pressure building up and causing other problems, including to the prostate. Also, posters make such a point about erection blood flow playing a role in healing, I also wonder if erections (and therefore increased "fluid" pressure) should be encouraged with such a strategy. Finally, has anyone else has had experience with the temporary size gain from grape seed extract and vitamin E-- any residual effect on the scar/inflammation from the stretching.
Robert
I might be reading this wrong. Did you suggest that semen builds up and causes pressure? That's not really how it works, if that's what you were suggesting.
---PJ
I'm on my grape extract protocol as we speak. The only size gain noticed is a big head some mornings ;D
I break my self up!!! :D
I meant that from avoiding any sexual release for such an extended period, there could be congestion throughout one's reproductive system that could create other issues.
Robert
Thought this was good. Its a "video" about sperm production from www.howstuffworks.com :
http://health.howstuffworks.com/adam-200126.htm
I notice a lot of posts on every subject in the "Oral Treatment" thread. I want to make a comment or two here.
A curve is caused by shortening of the tunica (failure to stretch as long as the other side). A curve will only straighten if the long side is also shortened. It can be shortened by surgery or by Peyronies Disease progression. OR if the short side becomes longer again. To say, "I think a treatment will straighten a curve but not return any size" is absolutely inconsistent with what a curve is.
Next, plaque reduction IS TYPICAL. I mean by this that it is typical for a plaque to feel smaller as Peyronies Disease matures. This is documented by most urologists that are considered Peyronies Disease experts. This is different than improvement since the plaque seems to contract to a smaller tighter size without an improvement in deformity. I would never assess a treatment on reduced plaque size. There is no goal to reduce the palpable size of plaque. The goal is to reduce deformity and increase erections. (or at least prevent more deformity and loss of erections) We must remind ourselves that this is the only assessment that counts. All other measures cloud the issue and perpetuate the problem of assessment.
I agree with your theory on the plaque reducing. It seems that my plaque is reducing or hardening- this has made my bend a tad bit worse, and caused more shortening along with loss of elasticity. What I've been saying to rico and others however, is that if you can inject say AA4500 into your plaque, and it indeed does reduce ones bend, than you are gaining size back. Mainly because in order to straighten out you'd have to make the short side more elastic, I think we agree on that. The main things to look for in a potential treatment then would be a significant decrease in the bend, or in some odd situations, an increase in size but keeping the same amount of bend. I've noticed with my curve, that during a semi erection I have a very noticeable bend, but if more blood is pumped in or more stimulation is consistently applied, my penis straightens out pretty well.
ComeBackid
URGENT ADVICE PLEASE
I have noticed that my Peyronies Disease has gotten worse, possibly due to one of the factors I'll list later in this post. Plus in the past 3 days i felt a strange burning pain inside of my p., which leads me to the conclusion that there's bad things going on as to the inflammation.
Five years have past since my injury that later on lead to Peyronies Disease. Recently I've been taking VitE, Cialis twice a week and pentox. worst thing is, that it was probably the (relational) high number of intercourses that worsened the condition.
Now what are the best meds/supplements to take in a state of acute inflammation? do you suggest to not have sex? would you stop taking E, pontax or cialis? is high blood flow good or could it carry the inflammation on to other areas?
problem is that i can't go and see my doc because i'm currently living abroad (in spain) as an exchange student.
another thing is that i've lately noticed a lot of new plaques - all down over the place where the scrotum is "fixed to" down to the bump between scrotum and anus, all full of irregular strange corroborations. are these plaques or are plaques usually only along the shaft?
___________
my core question is what meds to take right now ... antibiotics in avoidance of infection? if yes, what kind of antibiotics should I ask for in the pharmacy? thanks guys
___________
EDIT: doing some reading lead me to the conclusion that what i actually have is probably a lump in the testicles. will see a doctor tomorrow and try to think of sth else meanwhile (haha)
I had trouble understanding some of what you wrote. But I think that it might be of value to take some ibuprofen or a similar non-steroidal anti-inflammatory medication. When my Peyronies Disease acted up over the eyars, I believe that I limited the progression at that time by using ibuprofen. For that med, I used 800 mg three times a day for two weeks (maximum dose).
I might avoid intercourse, but would try to get daily erections or use the VED. i think that non-traumatic stretching is of value.
Good luck and let's see what the uro says.
Tim
english is obviously not my mother tounge; I am thankful for your advice, unfortunately I couldn't get an appointment, will possibly get one tomorrow. will try to obtain the anti-inflammatory you named
ok guys, I have a question about the dents that come with Peyronies Disease. What is the dent? I have read different things and was just wondering this today. Is a dent where plaque use to be and it left a area open so to speak, or is the dent scar tissue thats not expanding normally like it use to? Does anyone know for sure anyways what the dents are? Im talking about the hourglass effect or half hourglass effect etc. What causes that? I have heard alot of people say when the plauque leaves thats what is left.
HCTB:
I suppose there is a medical term that would apply to the dent left the plaque is gone, but have not been savvy to it.
In my case, there is a small dent left where the largest plaque area was about midway down the shaft. My curve was downward and to the right. The plaque was about the size of a quarter on the left side. This is where the dent is now only when erect. Not very noticeable at all when flaccid. At times, I can feel a small thin area that is firmer than the other tissue in the old plaque area.
Some guys have the dent left and others have no sign, so I would say that the dent(s) are relative to each individual.
Others may have an opinion or facts about this.
Old Man
Dear Goon (and may I suggest a more self-assured sounding name?)
You don't say what you want. If that is how you talk to your girlfriend, then that may hamper your communication greatly. My advice is that you take some time (it seems typing is not your thing - it is not the thing of a lot of guys here!) and tell us what it is that is wrong and what it is that you are looking for. If nothing else, that may help you understand what it is that YOU need, and help communication later at home.
Tim
Thanks Oldman. So your saying the dent is not scar tissue but rather a area left behind...a gap from where the plaque use to be?
HCTB,
You asked what causes a dent. I think you may have somewhat misunderstood Old Man's reply. I post this here since it has to do with the normal progression of Peyronies Disease.
I will share my understanding of a dent (which I also have). A very common progression for Peyronies Disease is plaque or scar tissue that is palpable, meaning it can be felt. Scar tissue and plaque are two names for the very same thing. The plaque deforms the erect penis in a variety of ways depending on the size, shape, and location of the plaque. This results in curves, twists, dents, hour glass, and bottleneck, formations of the erect penis because the area where the plaque is cannot stretch and fill out. Very often, in fact typically, plaque decreases in size as it matures. For instance an area that felt pea sized now feels like it is BB sized. Sometimes the plaque can no longer be felt, meaning it is not palpable. This is not usually curing although I guess it could be sometimes. Most often it is actually the normal plaque maturing and contracting process. Sometimes the contracting contracts down to the point you can not feel anything, but the fact that you have a dent, tells you that non-elastic scar tissue (plaque) is still there. If it is just a dent, it is because it is usually only a spot of scar tissue. A streak of scar tissue running length-wise causes a bend, and a band of scar tissue going around the penis causes an hour glass or bottle neck depending where it is.
A dent is a spot of plaque that may or may not be palpable depending on how much it has contracted down as it matured.
Thanks Hawk. So is the dent in the later part of the progression of Peyronies Disease or does it varie? I can live with the dent, im just wondering is the dent only the beginning of horrible things to come to a more severe bend etc? I guess there isnt a set path that Peyronies Disease takes right? I guess in wondering if this dent if its scar tissue will it turn into a very hard spot because it doesnt feel hard right now. Thanks for the help.
HCTB,
I don't think anyone anywhere can answer how your Peyronies Disease will progress from this point. Sometimes a dent or a bend marks the end of the only incident of Peyronies Disease progression a man will ever have. Sometimes it is only the first of a stream of such scar tissue formations, sometimes the scar tissue will actually reverse to some degree (either spontaneously or through treatments).
I wish I had a better answer for that one.
Thanks Hawk and Old man. Thats the only answer I can expect,lol. Like you guys said nobody knows for sure and it varies guy to guy. Well anyways I will be on and off here, you know how sporadic my visits are,lol. So talk to you guys in the near future.
Anybody heard of this:
When I first got Peyronies Disease, the nodule was up pretty close to the head. About 9 months later another nodule formed on the shaft about 1/3 up from the pubic region. Of course I was really bummed about a second nodule. Then about 5 months after that, the first nodule resolved itself. Of course I was then jumping for joy thinking in about in about 8-9 months the second nodule would do the same. It NEVER did and is still there!! In all my time on the forums and through all my research, I've come across very little information that addresses this. Has anybody heard much of somebody having Peyronies Disease and some of it resolves itself and some of it does not. Because, considering what they claim to know about Peyronies Disease, this type of pattern does not make sense. Very odd!
Also, unfortunetley we all know the chances of Peyronies Disease resolving itself is very low. Much lower than was first claimed by the medical community. 30% my ass!! At least they are now lowering the % to a more realistic number of around 10%-15%, but I STRONGLY believe it is more in the 3%-7% at best. Anyway, if the Peyronies Disease is to resolve itself, research says it will occur within the first 2 years of onset. I unfortunetley am way past that time frame. Has anybody heard of any cases in which the Peyronies Disease resolved itself later than the 2 year time frame. I'm not talking about 2 years and 7 months or anything. I'm sure there are some cases in which it may have taken just a little longer than 2 years. I'm talking about 4, 5, 6 years or even longer. I know, wishful thinking, but has anybody heard of ANY cases or even 1 case of this happening?
Rzz
In early 2005 I had 4 dents (2 on each side) & the beginning of the hinge effect. By late 2006 all 4 dents were gone 100% & no hint of the hinge effect. While I have used many oral supplements to treat peyronie's I give most of the credit of elimination of dents to use of topical magnesium sulfate. I have used this topical preparation daily for almost 2 years now. For me it worked however it is very slow in its action & may not work for others. Normally I use 200mg, 3 times a day.
Mark501,
Is the magesium sulfate cream you are using transdermal? I do like epsom salts and know they work on nerves and sprains ect.... after reading your post I found some that is transdermal cream from spain, is this what you are using? Thank you and God Bless...
Rico
Rzz, Everything you are describing sounds very familiar. The way this disease progresses is not like the way it is often described. There are subtle background vectors that cause it to ebb and flow over time. In some cases it persists, in others it goes away and in still others it goes away and then comes back. I started out with one nodule and then, all of a sudden, another appeared way down the shaft just like you have experienced. If you do nothing, I can pretty much assure you that it will not resolve itself. On the other hand, I am using supplements, diet, and exercise and that is getting results by keeping it in check and then some. In my case it ebbs and flows with time, but I can say that it has regressed at this point to the degree that I have never been in better shape than now since I started dealing with a bit over a year ago (I first had symptoms in early 2004). So I am convinced that it is never untreatable even for those that have calcifications. It is harder to deal with and might require something like Pentox and/or VED, but there is always a lot of hope. Its a matter of understanding the physiology behind it (TGF-beta, etc.) and then dealing with that in a consistent, rational manner. You have to fight it blindly because the day to day improvement is so small you won't be able to tell the difference. You just have to KNOW you are doing the right thing and keep plugging away and always be willing to learn and apply new strategies without slacking off on the existing ones and gradually you can push back on it effectively over time. The latest thing I have discovered is that if I aggressively massage the plaques to the point of inflaming them, it will make them soften and relax and so far they haven't shown any tendency to rebound. I am pursuing this while making sure that I am always on heavy duty anti-inflammatory supplements so that they can't 'reactivate' again and rebound on me. I am always willing to learn new things, like for example, Mark's experience with topical magnesium sulfate. SO - Mark - Please share more about the product you are using and any necessary details as to how the rest of us can benefit from this strategy! It is really a matter of finding out from the posts on this forum what works and combining the ones that can fit together in a unified strategy to knock out this disease. It is very tenacious and it takes the application of multiple vectors over an extended period of time to push it back and out of our lives, but I am convinced by my own experience that it can be done. People don't just get over Peyronies by chance. There is some reason that a few get over it and most do not. That is the question that needs to be answered. What is it that is different about the people who get over it from the rest of us who don't?
??? Can anyone tell me how you measure the angle of your curve?
booddo2u:
I suppose the best way to measure the angle of the curve would be in the erect state, if that is possible.
The way I do it is this: Get an erection, either with help or by spontaneous method. Looking downward observe which way the curve goes. Assume that straight from your body is the initial point, let that be the 0 degrees and then measure the degrees either right or left from that point up a 90 degree right or left angle.
Measuring either upward or downward curve/bend is done in the same manner assuming the straight out position as the 0 starting point. (I have seen pictures of penises with almost 180 degree curve bending back toward their body.)
Sound confusing, but that is the way that I measure my curves/bends, angles, etc.
Others may have a better method and I am sure you will get other remarks.
Old Man
Ahhh, the wisdom of an "Old Man". Thanks once again.
The easiest way to derive the formula is to use analytic geometry. Let the rod start from the origin of a
cartesian coordinate system, with the end elevation being the projection of the rod onto the y-z plane andthe side elevation being the projection of the rod onto the x-z plane. I'm not sure whether your angles are the angles from the vertical or from the horizontal, but it turns out that the formula is simplest if all angles are from the vertical, so that's how I'll define the angles.
The point on the rod at height 1 unit above the x-y plane has some coordinates (x,y,1). In the end elevation, this point has coordinates (y,1) and the tangent of the angle from the vertical, which I'll call alpha, is y/1. In the side elevation, the point has coordinates (x,1) and the tangent of the angle from the vertical (I'll call it beta) is x/1.
The compound angle theta is the angle between the rod and the z axis. The distance between the point (x,y,1) and the z axis is
r = sqrt(x^2+y^2),
so
tan(theta) = r/1
= sqrt(x^2 + y^2)
= sqrt(tan^2(alpha) + tan^2(beta))
and our formula for the compound angle is
theta = arctan(sqrt(tan^2(alpha) + tan^2(beta))
If the angles from the vertical in the two elevations are 32 degrees and 48 degrees, then
alpha = 32 degrees; tan(alpha) = 0.624869
beta = 48 degrees; tan(beta) = 1.110613
tan^2(alpha) + tan^2(beta) = 0.624869*0.624869 + 1.110613*1.110613
= 1.623922
sqrt(tan^2(alpha) + tan^2(beta)) = 1.274332
theta = arctan(1.274332)
= 51.87 degrees
I hope this does the trick for you!
Or you could just make a guess at it. :)
;D
Yes, but the sqrt of a number can yield either a positive or negative result. Therefore, the final deviation could be -51.87 degrees too!
Here is a conventional protractor you can print if you really want to know the angle. It can be folded in half on the 90 degree line and one side used for bends to the right and the other side for bends to the left. You could use a mirror to measure upwards or downwards curves (or get a helper). Put the "zero" edge of the protractor against your body and your penis will point to the approximate angle. The file is a .pdf format so you'll need Adobe Reader to open and print it.
My initial injury occured over 2 years ago due sexual activity while not fully erect (some scarring on the top of the shaft).
Now just a few hours ago I was having sex with my girlfriend and I think I may have injured it again.
Basically it was a classic I pulled out and then she moved toward me ...I missed and jammed it against her or the mattress (not sure).
This isn't the same type of injury as before but I am really scared.Basically i think it buckled a bit in the middle and this is where it hurts... its not extreme or anything and not black or blue. Is there anything I can do to help ensure I don't develope a new plaque?
I have taken Advil and ALCAR as well as Arginine.
Any advice is appreciated...
TS
I am speculating a bit but I think I would lay off the Arginine for a week or two and concentrate on the anti-inflammatories and maybe even a cold pack for a few days to prevent any bleeding/bruising. After that initial period I would concentrate on increased blood flow with such things as (arginine, ginko, gentle heat, pentox).
Thanks hawk for the amazingly quick reply.
The reason I was thinking Arginine is because it supposedly has some antifibrotic action: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Citation
I think you may be right though in that possibly arginine could make inflammation worse.
Fracture of the Penis
No, it's not a myth; it can happen if undue force is applied to an erect penis.
Symptoms include
Immediate loss of erection
Pain
Bruising
A cracking noise
Bleeding from the urethra
These symptoms are actually caused by a tear in the tunica albuginea, which is a tough, fibrous layer covering the corpora cavernosa**
Anyone suspecting that they may have injured their penis in this way should seek help and advice. Treatment usually consists of
Ice packs
Painkillers
Support
Anti-inflammatory drugs such as ibuprofen
These measures usually result in a satisfactory outcome in the majority of cases, a satisfactory outcome being measured by normal functioning and no residual anatomical deformity (eg angled erection).
Investigations are likely to be needed to determine the extent of the injury and include ultrasound, xrays and occasionally mri scan. Surgery may be necessary to repair the damage.
**the part of the penis which becomes swollen and engorged with blood, producing an erection.
http://www.studenthealth.co.uk/advice/advice.asp?adviceID=187
Hawk nails it again!
--------------------------------------------------------------------------------------------------------------------------------------------------
For a little comic relief (don't get any ideas)
BOSTON -- A woman isn't legally responsible for injuries her boyfriend suffered while they were having consensual sex more than a decade ago, a state appeals court ruled Monday.
The man, identified only as John Doe in court papers, filed suit against the woman in 1997, claiming she was negligent when she suddenly changed positions, landed awkwardly on him and fractured his penis.
The man underwent emergency surgery in September 1994, "endured a painful and lengthy recovery" and has suffered from sexual dysfunction that hasn't responded to medication or counseling, the appeals court said.
Although the woman may have exposed her boyfriend to "some risk of harm," the three-judge panel said her conduct during the sexual encounter wasn't "wanton or reckless" and can't support a lawsuit.
The man's lawsuit already has been thrown out by judges in Salem District Court and Essex Superior Court.
The appeals court upheld those rulings while noting that its ruling doesn't apply to cases where someone has negligently infected a partner with a sexually transmitted disease.
"There are no comprehensive legal rules to regulate consensual sexual behavior," Justice Joseph Trainor wrote. "In the absence of a consensus of community values or customs defining normal consensual conduct, a jury or judge cannot be expected to resolve a claim that certain consensual sexual conduct is undertaken without reasonable care."
The man's attorney, John Greenwood, said he is likely to appeal Monday's ruling to the state's highest court.
"It's a case that hasn't been seen before in Massachusetts," he said.
Greenwood argued that consensual sex doesn't mean "anything goes. ... The fact that some behavior was agreed to by the parties doesn't mean all behavior was agreed to by the parties."
The District Court judge who threw out the case said he was reluctant to "expand the reach of tort law further into the bedrooms" of Massachusetts. He also noted the Legislature is free to clear up any legal ambiguities by passing a law defining negligent sexual intercourse.
The appeals court's judges ruled against the man on slightly different grounds than the lower courts. They said the woman didn't owe her boyfriend a "duty of reasonable care" during consensual sex. And they didn't find any evidence she knew her conduct was likely to harm him.
"Here, the undisputed facts demonstrate that the defendant did not think about possible injury to the plaintiff when she changed her position," they wrote.
Liam,
That bottom story is rather hilarious I must say. Thanks for the bit of comic relief.
Hopefully my injury is just superficial... but this sentence in the first bit:
These measures usually result in a satisfactory outcome in the majority of cases, a satisfactory outcome being measured by normal functioning and no residual anatomical deformity (eg angled erection).
does worry me a bit because arguably those that do not have residiual deformity aren't genetically predisposed to peyronies...compared to some of the rest of us. Unless it takes a certain type or degree of injury to set things in motion and who knows what rules apply to those of us that already have plaques etc.
This is a complicated and worrisome illness!!
Thanks for all of the support everyone.
ThisSux
//Still hoping for collagenase
Great point. In my case there was no trauma that I noticed. The predisposition was there, though, as evidenced by my having frozen shoulder in each of my shoulders. This started two years prior to Peyronies Disease.
I 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) 8).
Hello everyone,
Firstly, thank you for having such a community--the information here is overwhelming and the members all seem so willing to share and help.
I've spent many hours reading and searching through these forums before making this post, so hopefully not too much of what I'm presenting is duplicated...or maybe all of it has already been; the number of posts here is staggering! I also hope I've posted this in the most appropriate forum thread.
I've had Peyronie's since around 2002. The urologists I had seen at the time, much like the experience of many here I've read, didn't offer much. Prescribed some antibiotic for a short duration and told me to come back in 3 months. Fast forward now to the present. For about 2 months now, I suddenly noticed improvements in my condition: regained some length (use to be close to 7", went down to about 5", but since these last 2 months it's at 6") and girth and greater rigidity (thought not perfect at all) and little less curve (it is now 5-10 degrees when erect and up to 35 degrees, depending on weather, when flacid; this is all eyeballing)--but the slight narrowing at the base of the shaft when erect remains. I no longer ejaculate quite as fast (after a few minutes now) but it would still be classified as premature ejaculation which I did not have before developing Peyronies. Pain has come and gone throughout these 5+ years; I have slight pain presently. Also, I developed a reoccurring angioedema on the underside of the shaft, near the head; this came and went for about a year. And besides that initial antibiotic, I have never taken any medication or treatments to address my Peyronies--I was sadly unaware of amazing sites like this all that time. That would sum up the more salient points in the timeline of my Peyronies misery. Following are some questions that I hope people in this community would be able to help me with. Thank you so much for any of your thoughts or information or personal experiences.
1) From what I've read in this forum and other health sites, it seems the initial 18 months are usually when any progress, good or bad, occurs. Is it therefore very abnormal for me to have experienced this sudden improvement after roughly 5 years of mostly stable Peyronies?
2) When I first developed Peyronies, for perhaps the first year or so, the quality/appearance of my semen constantly fluctuated. Sometimes it was very liquidy, or dark yellowish, or there was even bits of blood. I've told this to the handful of seemingly uninformed urologists I have seen and none of them thought anything of it--I would have thought blood in the semen would have gotten more of a reaction! So far in reading the posts here, I haven't come across yet anyone describe what changes can occur to their semen with Peyronies. Has anyone here had semen similar to what I described? (My semen is normal looking now.)
3) Would doing kegel exercises possibly help any aspect of Peyronies or would it simply irritate the plaque and exacerbate the problem?
4) Due to my present situation where I'm seeing slight improvement, is there anything in particular I should be doing (diet, vitamin e, exercise, etc) to try to capitalize on this period of progress?
5) One of the urologists I had seen when I initially developed Peyronies gave me a paper with Do's and Don'ts. Could you all help me in assessing if you believe there's truth (whether by your own experience or from what you've heard from your doctor) in any of these:
-Do's
Two quarts of water a day
Cranberry juice
Cranactin
Site baths at 98-102 degrees, no bubble/soap
-Dont's
Coffee (Tea is ok, it's not the caffeiene, he says)
Alcohol
Spicey foods
Citrus
Bananas
Nutrasweet (Sweet & Low is ok)
6) Since the tocopherol in Vitamin E (thank you George999 for all your hugely informative Vitamin E posts) acts as a strong antioxidant, would drinking Pomegranate Juice (exceptionally high in antioxidants) be worth a consideration? I suspect the doctor recommended Cranberry juice cause it helps to cleanse the urinary system but I believe it has antioxidants too, so perhaps Cranberry Juice would also be worth considering? Or any other food with antioxidants, like chocolate, etc...
7) A very general question. Are there any particular foods that people here always avoid or make sure they include in their diet?
8 ) Should masturbation/sex be limited or lessened when there is pain, as opposed to the times when there isn't pain? Or is it always best to get an erection or ejaculate once a day to get blood flowing in the penis regularly?
9) Lastly, just today, as I was trimming my pubic hair, I very slightly snipped the surface of the skin, at around the area where the shaft meets the scrotum, on the underside. It seems to be closer to the scrotum. Hard to tell. This happened once before but I didn't have Peyronies then, so I didn't freak out. It healed just like any other part of the body. Now that I have Peyronies, I might be a little alarmist: this won't cause a plaque to form will it? Since trauma (although this is just a tiny surface cut) would have to occur at the tunica albuginea level, not just the surface of the skin.
Thank you for reading. I look forward to any input or recommendations! I wish you all well and hopefully improvement with your condition.
Good afternoon, this is the first time I post on this forum.
I was diagnosed with peyronies in August 2004. The lump was at the base of the shaft and the curvature is minimal. I tried treatments such as Vitamin E, Potaba and Verapamil injections. All of these treatments didn't really do much to improve my situation. After a year and a half (February 2006) the pain while erected went away by itself and I hadn't felt any pain since.
I started taking an anti-depressant (Paxil) 9 weeks ago for my OCD. Two weeks ago the pain started again and I feel like the curvature in my penis is getting worse. Does anyone know if an anti-depressant could cause the pain to come back?
Thank you in advance.
Ben
Welcome Daniel!
Quote from: Daniel on May 20, 2007, 11:17:58 PM1) From what I've read in this forum and other health sites, it seems the initial 18 months are usually when any progress, good or bad, occurs. Is it therefore very abnormal for me to have experienced this sudden improvement after roughly 5 years of mostly stable Peyronies?
I have heard this over and over and over. From my own experience, I think that while this may be a common perception, the reality is that these Peyronies lesions remain extremely dynamic. Part of the problem is that evaluating progress or regression is extremely subjective. Things may seem to be improving, but actually getting worse. For example, the plaque could be spreading in a way that would actually result in straightening. However, the opposite is also true. Things could actually be improving, and yet conditions like curvature could be worsening. The fact that you have observed improvements in length and girth, however, seem to me like a very good sign with some objective evidence accompanying them. You should be rejoicing. We would all hope that this improving trend will continue. I actually believe that Pyronies has as its root cause some metabolic aberrations, and that if those metabolic aberrations are removed and/or corrected, the Peyronies damage should heal on its own. This is just my personal speculation that is unsupported by any reasonable scientific evidence. But it is just cases like yours that reinforce that conviction. Also, I was able to reduce an old hardened plaque by close to 90% with Camphor. Unfortunately, it didn't work for anybody else, but the one major concept I took away from the experience was that, if an old hardened plaque can be reduced so dramatically, certainly Peyronies itself is reversible. What we really don't know yet is the how part.
Quote from: Daniel on May 20, 2007, 11:17:58 PM2) When I first developed Peyronies, for perhaps the first year or so, the quality/appearance of my semen constantly fluctuated. Sometimes it was very liquidy, or dark yellowish, or there was even bits of blood. I've told this to the handful of seemingly uninformed urologists I have seen and none of them thought anything of it--I would have thought blood in the semen would have gotten more of a reaction! So far in reading the posts here, I haven't come across yet anyone describe what changes can occur to their semen with Peyronies. Has anyone here had semen similar to what I described? (My semen is normal looking now.)
EVERY urologist I have consulted with (and the number is legion) has insisted that condition of semen is meaningless and that blood in semen is common and often associated with prostate infections. Bottom line, I wouldn't be concerned about it or attach any significance to it unless it (blood in semen) continues over a long period of time.
Quote from: Daniel on May 20, 2007, 11:17:58 PM3) Would doing kegel exercises possibly help any aspect of Peyronies or would it simply irritate the plaque and exacerbate the problem?
Most docs seem to believe that kegels are a good thing. I think I would agree with that. The major problem with kegels has more to do with maintaining the discipline to do them regularly. I have NEVER heard anything to indicate that they might be bad for Peyronies.
Quote from: Daniel on May 20, 2007, 11:17:58 PM4) Due to my present situation where I'm seeing slight improvement, is there anything in particular I should be doing (diet, vitamin e, exercise, etc) to try to capitalize on this period of progress?
I think all of us here are taking slightly different approaches. I don't think any of us have discovered a magic bullet. You just have to review the posts and decide how far you want to go and how much money you want to put into it. There are a number of different approaches. I don't think any of them have proven to be a 'gold standard'. The approach that seems to hold the most promise at this point is Pentox, but with as few problems as you are having, I don't think you could get a prescription for it and I'm not sure it would even be wise for you to take it.
Quote from: Daniel on May 20, 2007, 11:17:58 PM5) One of the urologists I had seen when I initially developed Peyronies gave me a paper with Do's and Don'ts. Could you all help me in assessing if you believe there's truth (whether by your own experience or from what you've heard from your doctor) in any of these:
-Do's
Two quarts of water a day
Cranberry juice
Cranactin
Site baths at 98-102 degrees, no bubble/soap
-Dont's
Coffee (Tea is ok, it's not the caffeiene, he says)
Alcohol
Spicey foods
Citrus
Bananas
Nutrasweet (Sweet & Low is ok)
These are classic recommendations for urinary tract infections. I don't see any connection with Peyronies in any of them.
Quote from: Daniel on May 20, 2007, 11:17:58 PM6) Since the tocopherol in Vitamin E (thank you George999 for all your hugely informative Vitamin E posts) acts as a strong antioxidant, would drinking Pomegranate Juice (exceptionally high in antioxidants) be worth a consideration? I suspect the doctor recommended Cranberry juice cause it helps to cleanse the urinary system but I believe it has antioxidants too, so perhaps Cranberry Juice would also be worth considering? Or any other food with antioxidants, like chocolate, etc...
Again, the jury is still out on this. I take tons of anti-oxidants. Has it helped? Who knows? Outside of a carefully planned study, it is really impossible to objectively evaluate things like this. I take them. I believe in them. But really, no one knows how they actually impact Peyronies. But I have personally found that Vitamin E does seem to be helpful (but that is just my subjective observation). (Thanks for the feedback on my Vitamin E posts!).
Quote from: Daniel on May 20, 2007, 11:17:58 PM7) A very general question. Are there any particular foods that people here always avoid or make sure they include in their diet?
Personally, I ALWAYS try to avoid food with inflammatory fats and favor foods with anti-inflammatory fats. That means avoiding things like red meat and other sources of saturated and trans fat. and using things like olive oil, fish oil, and flaxseed oil regularly.
Quote from: Daniel on May 20, 2007, 11:17:58 PM8 ) Should masturbation/sex be limited or lessened when there is pain, as opposed to the times when there isn't pain? Or is it always best to get an erection or ejaculate once a day to get blood flowing in the penis regularly?
The answer to this question is to simply use common sense. If it is painful, don't do it. In general, erections are a good thing, even if they are accompanied by pain.
Quote from: Daniel on May 20, 2007, 11:17:58 PM9) Lastly, just today, as I was trimming my pubic hair, I very slightly snipped the surface of the skin, at around the area where the shaft meets the scrotum, on the underside. It seems to be closer to the scrotum. Hard to tell. This happened once before but I didn't have Peyronies then, so I didn't freak out. It healed just like any other part of the body. Now that I have Peyronies, I might be a little alarmist: this won't cause a plaque to form will it? Since trauma (although this is just a tiny surface cut) would have to occur at the tunica albuginea level, not just the surface of the skin.
I can only tell you that if it were me, I would not be very worried. I have never heard of Peyronies happening this way. I would be totally amazed if it did not heal just as completely as the last time it happened.
- George
I've seen people speculate about antidepressants and Peyronies Disease. I've even seen it listed as a "rare" side effect for certain drugs. I have never seen any real hard evidence, though. I would expect to see more men, or at least more discussion, here if antidepressants caused or worsened the condition.
Daniel,
I liked what George said.
I find it really curious a doctor gave you antibiotic. Did he mention phlebtis with an infection or the posibility of an infection?
I thought that Gandalf was pretty sure that there was at least a temporal relationship between antidepressants and the onset of Peyronie's Disease.
Tim
Maybe the depression, or the cause of the depression, caused the Peyronies Disease. Maybe the earliest, and previously unnoticed, symptom of Peyronies Disease is depression. :-\
Hell, I'm depressed just talking about it. :(
I think Hurricane Ivan had something to do with mine.....all the twisting. And the low pressure must have disturbed the blood flow. ;)
Seriously, I think everyone wants to blame something other than bad genetic luck or karma (I'm making my list just in case) or predisposition or whatever. There has to be one thing that "did it". I guess thats human nature. I notice masturbation has been cited as the cause ad nauseum. Maybe it is misplaced guilt. I'll leave that to the psychologist. I thought, for a while, it might be Coca-Cola that caused mine. I was drinking several soft drinks during the day because of the long hours I was working. I did this for several years ::). It is very hard to detach yourself from your own circumstances and look at your situation with a neutral eye.
Antidepressants can definitely cause rubbery erections :-[ in some people and that can put you at risk to injury.
Hello again,
Thank you so much for your reply George! Sorry I didn't reply sooner. Thought I had configured the settings to notify me of a reply via email. Maybe I fudged that up. I just came back from an appointment today with Dr Martin K Gelbard (his site: http://www.peyronies.net/), one of only 5 Peyronie's specialists in the state, at least according to here: http://peyroniesaassoc.org/x.php?p=Physician_Finder#D1
I came away from the appointment with mostly amazing news. I told him everything I shared in the earlier post below and after an examination he told me I do not have Peyronies. He stretched my flacid penis and told me that if I had Peyronies it would not have been possible to stretch it to the extent he did. He said he felt absolutely no scarring and that it actually looked perfectly normal. I asked if it would be best, to be safe, to take an ultrasound and he said he believed it would be unnecessary. He believed that either I had had Peyronies 5 years ago (when this all first started) and that the plaques have since disappeared or that I had lost some elasticity and these past 2 months of improvement means a very positive return of elasticity. He did suggest that I take 400UI of Vitamin E for a few years. And that's it. So I'm relieved that I don't have Peyronies, at least with some certainty. But obviously still scared for the condition that I have now. Hopefully it will continue to improve though.
I had mentioned to him that I had been reading extensively online forums and had never come across any accounts of people saying that they after having Peyronies that suddenly had premature ejaculation. I asked is it common for Peyronies to give rise to premature ejaculation. He said no.
Is there anything in the doctor's conclusion that anyone here questions? He seems to have the qualifications but I certainly appreciate any thoughts on this. Basically, I would like to make certain it really isn't Peyronies. Perhaps I should see the one other Peyronie's specialist in LA (he and this doctor I saw today are the only 2 specialists within driving distance) some months from now for a confirmation/second opinion.
I thought I would share the doctor's answers to some of the questions I had posted here previously below, info for you all.
Quote from: Daniel on May 20, 2007, 11:17:58 PM3) Would doing kegel exercises possibly help any aspect of Peyronies or would it simply irritate the plaque and exacerbate the problem?
Doc said it can be a good thing. No fear of exacerbating Peyronies.
Quote from: Daniel on May 20, 2007, 11:17:58 PM5) One of the urologists I had seen when I initially developed Peyronies gave me a paper with Do's and Don'ts. Could you all help me in assessing if you believe there's truth (whether by your own experience or from what you've heard from your doctor) in any of these:
-Do's
Two quarts of water a day
Cranberry juice
Cranactin
Site baths at 98-102 degrees, no bubble/soap
-Dont's
Coffee (Tea is ok, it's not the caffeiene, he says)
Alcohol
Spicey foods
Citrus
Bananas
Nutrasweet (Sweet & Low is ok)
He said he saw none of these recommendations particularily pertinent to Peyronies.
Quote from: Daniel on May 20, 2007, 11:17:58 PM8 ) Should masturbation/sex be limited or lessened when there is pain, as opposed to the times when there isn't pain? Or is it always best to get an erection or ejaculate once a day to get blood flowing in the penis regularly?
He said to not have sex/masturbation when there is pain and if pain arises during sex/masturbation, simply stop.
best,
Daniel
Great news! Seems like Dr. Gelbard has a firm grip on Peyronies Disease :) ;) :D ;D
Seriously, thanks for letting us know the follow up. One thing I am curious about is your age when you first noticed the symptoms.
Maybe I've been wrong about spontaneous recovery. ;) Maybe it was the lists of dos and don'ts the doc who diagnosed you gave.
Who cares? Good report with sound advice!
Best of luck,
Liam
FWIW, when the shaft bends upwards, the glans is brought into more direct contact with the anterior vaginal wall. For me, this translated into more stimulation and faster orgasms.
Secondly, my erectile quality worsened over time with Peyronies Disease (Peyronies Disease) and I countered that by squeezing my pubococygeal muscles during sex to stay erect (basicly a Kegel exercise). That would bring me closer to orgesm, but the alternative (growing softer) was seemingly worse. So both the Kegeling during sex, and the increased stuimulation would lead to a more (relatively) rapid ejaculation during sex.
I think Peyronies Disease can and did for me lead to premature ejaculation. Now, using Horny Goat Weed (which works well for me instead of Viagra), I get and keep erections well. The tendency to get to the orgasmic brink very quickly persists, though. Other issues can affect that, though, including testosterone levels, so checking out the alternative reasons (including stress and anxiety) is important.
Tim
Daniel,
Great news! I am so happy for you!
I need to make a request. It is critical to the users and guests visiting this forum that you post the specifics of your past condition, your treatment if any, and the details of your improvement under the topic "Improvement - Accounts of improvement in deformity or erection". I know it is a pain but you can cut and paste sections of your other posts to cut down on entry time.
It means a lot to many.
Thanks
Hawk
PS: if your faccid penis stretches and Dr. Lue said no Peyronies Disease, I would not waste my time going elsewhere. Bask in the good news.
Thanks for the support guys! Feels good to have a cheering section!
Liam,
I was about 20 when I first saw the curve (towards left) appear. Could have been even earlier but I checked the earliest date I made a mention of it in my medical diary and it was 5 years ago.
Hawk,
I will gladly do as your requested. Will get to it tonight or tomorrow. I'll actually call the doctor shortly for a few more questions I came up with since the appointment. So I'll share anything relevant in that conversation. Btw, it was Dr. Martin Gelbard, not Dr. Lue.
best,
Daniel
I'm impressed. What a great idea. That would be a good idea for all of us to track our condition(s). I have to confess, though, at 20 I couldn't keep up with my car keys much less a diary. You must have had a good role model to be so organized. My wife's family is that way. :)
Liam
Is it possible - Is anyone interested in devising a quasi scientific questionaire for people to fill out say after 6 months and 1 yr of treatment. Questions could be related to type of treatment and curvature changes. I don't know what this entails and if the administrator of the forum has the wherewithall to do this but the information could be helpful for those who want more accurate information and treatment options. Alan
Since there is no baseline measurement for most, any survey would be based on a biased subjective opinion. I have seen posts saying one day they are better and the next day they are worse. A few of those would render the survey worthless.
If there was some way to find an objective measure, I would be all for it.
Liam:
While a survey may not adhere to strict double blind scientific procedures, I think it can still be of value. People now post all kinds of subjective results and opinions but there are no mechanisms to filter the data or put it in a timely perspective. The question is whether having this more organized and presented in a more coherent and meaningful way is helpful and worth the trouble. For me getting info say 6 months and again at a year would yield more accurate info than what I see now. Some initial criteria needs to be garnered, like angle of bend or bends and what treatment options are being used. Even knowing the percentage of answers to improvement such as a little, moderate improvement or significant improvement would help me decide what to do if anything. If you are looking for anything more accurate than this, I understand this certainly is not worth the time. Alan
Alan,
We have some polls under that section of our forum. We also have more detailed surveys on topical Verapamil and Intralesional Verapamil on our website. Even without the truly scientific survey, a good survey is very difficult to put together. It must be worded so all possible answers are included but in such a way that no answer overlaps any other answer. Then, it has to be put in web page format and finally the responses compiled. Often participation is low and it frankly takes a huge amount of my time for the limited participation. If everyone supported such surveys I would be much more inclined to put the extra time into them.
Been using EMS (electric muscle stimulator) for about 3 months now and have already seen significant results. I haven't seen any research on this method, I kinda created it by deductive reasoning. I've use it twice a day, 20 minutes at a time. I've seen a difference in the elasticity of the plaque and a few degrees curvature correction. I'm also on vitamin E orally and topically. Just curious if anyone else has use this or a similar method of treating their Peyronies Disease.
Thanks for bringing this up johndoe, this is very interesting and I haven't really given to much thought to this type of approach, but I can certainly imagine that it could work. Anything to could serve to gently exercise the Tunica could possibly be capable of disrupting plaque formation. And since plaques are constantly breaking down, if you can disrupt their formation, you can defeat the process. I suspect that the VED works via similar pathways, but this could be far more effective if it indeed works. Please keep us updated. Perhaps you could also provide information on the device itself in case any other brave soul around here might want to give it a review. It is just this type of exploration that might crack open the door to a more effective and complete solution to this affliction. - George
Jondoe
Thanks for reporting on this treatment. It sounds like pioneering work, so congratulations on getting some positive results.
Like George, I would like to know something about the technique - perhaps you could elaborate.
It sounds a bit scary as it conjures up galvanic experiments with frogs legs, or even Dr. Frankenstein's creation - 'throw the switch Igor, the storm is at its height!'
However, I expect you are using something a lot more sophisticated than a kite in a thunderstorm with the string attached to your unit.
Seriously though, I would be very interested in learning about your method with view to trying it myself.
Regards,
Percival
:o :o :o
Common sense. HELLO!
:o :o :o
Be careful guys. :-\
well thanks for the reply guys and even though it sounds a bit scary i assure you it's not, i'm not stupid. i have many years experience with EMS therapy. i used to be an athlete in high school and in college. i suffered injuries pretty much on a weekly basis and lived in the training room. a few of my injuries dealt with plaque and or lactic acid build up in my muscles where i had to use EMS therapy to get rid of the build up. the rest is easy to figure out, if the problem that i'm having in my penis is due to "plaque" build up, and the EMS therapy did wonders for me in other areas of my body, why wouldn't it work there? (deductive reasoning). now i'm in no way telling everyone else to do this as it's not a medically recommended method for treating Peyronies Disease, i took this risk myself and am willing to see how it works out (so far so great). i'm providing a link to the device i bought. what i do is place the two electrodes on the side of my penis where the plaque is. one at the top of the penis and the other at the base. i then turn the device on to a very, very low frequency, just barely enough to where i can feel it and be comfortable. i stretch out my penis as far as it can go and hold it there for about 20 minutes and then i'm done. i've been doing this twice a day for a while now and have already seen significant results. i'm curious to see how it looks a year from now. i'm going to stay on this therapy (as it seems not to be harmful in anyway) as long as i can as well as my oral and topical vitamin E therapy (one tablet in the morning orally, and then i rub in vitamin E once every morning as well). i'll keep everyone updated and informed with my progress as much as possible.
http://www.activeforever.com/p-1088-ems-50-electronic-muscle-stimulator.aspx?Source=Yahoo-Shopping
John,
There are a few pieces of evidence out there that would indeed make one ask the question "would administration of electrical current be helpful". The problem with "deductive reasoning" is that you must have sufficient knowledge and facts about the subject at hand. Deductive reasoning applied on the basis of one or two facts actually becomes little more than a guess. It is a dangerous way to experiment on one's only penis. Many ideas that seem good on the surface turn out to be catastrophes because of a single unknown, or one unconsidered factor ("The best laid plans of mice and men go awry"). Comparing hypertropic scaring in the tunica with possible autoimmune characteristics, to "plaque" in voluntary muscles is a big jump. There are surely more differences than similarities. I am also interested in whether you are even saying ems gets rid of scar tissue in voluntary muscles?
Keep in mind, I am not suggesting you are not improving, and I am not indicating that the improvement is not the result of EMS, Often we can guess and be correct. I am only putting such experimentation in perspective.
I hope you continue to improve and that you have stumbled upon a beneficial solution.
I seem to remember at some point that there was speculation that positive Iontophoresis results may have been the result of the current being applied, and not the actual 'delivery' of the medications? Could JohnDoe's experience perhaps lend some support to that idea?
Personally, I'll wait for a LOT more background work before I 'Plug In', but it's an interesting idea to explore.
Good luck JohnDoe, and please keep us all up to date on your findings!
Steve,
The speculation you reference in the post just prior to this one is one of the specific pieces of evidence I am in reference to. Years ago I also read a study indicating that specifically, broke long bones, heal significantly faster if a steady very weak current is run through them. I never heard any more about that, and again, even if that is true it is difficult to speculate if it would impact Peyronies Disease and whether it would help or hurt Peyronies Disease.
While it is obviously important to err on the side of caution, I nevertheless find John's discovery fascinating. From some past personal experiences I would rather not go into, it just makes very good sense that this could be very effective. I am totally convinced that mobility is VERY important to having a healthy tunica and mobility is something that Peyronies compromises rapidly. Inducing a GENTLE twitch in the tissue in question would have all kinds of interesting effects on the cellular level. This is just so cool. Hopefully John will continue to keep us informed about his progress because it is really not until you are a year or two out with this sort of thing that you can really come up with a reasonable evaluation. All kinds of things could potentially go wrong between now and then, most of them rather benign, but then there is also a slight risk of something more serious. But at these low current and voltage levels (9v power source ... duh) and with the fact that this device is already known to be safe for other parts of the body, I can't see the risk as being very significant. But the upside ... the potential upside is huge. Its like an electronic VED in a sense. My mother used a TENs unit for shingles and found it very helpful. But hopefully no one goes overboard on this and plugs themselves into a wall outlet :o .
...and then his penis fell off. ;D
It's like eating raw oysters. I love 'em but I'd never have been the first to try 'em.
BTW, I still haven't tried Adolf's Meat Tenderizer.
George,
I find your posts to be among the most interesting and informative posts on the forum so I would be suprised if you would disagree with a point I would like to make. You said:
Quote from: George999 on June 28, 2007, 06:01:23 PM
While it is obviously important to err on the side of caution, I nevertheless find John's discovery fascinating.
After thinking about it I am sure you will agree that it is way too early and too premature to even begin to refer to this as a discovery. The data to indicate this has any positive effect on anyone's Peyronies Disease simply does not exist. In fact if John had a total reversal of his Peyronies Disease the data still would not exist. There is spontaneous recovery, he is stretching it for 20 minutes a day, and he is taking vitamin E. A recovery would barely be getting us to the point of raising an interesting question that needed an answers.
I am not knocking someone cautiously trying this because I had a disposable EMS unit that I was given after a ligament graft. I experimented with it a bit when I first got Peyronies Disease.
I am also interested in some elaboration of this point
Quotemobility is something that Peyronies compromises rapidly.
.
The twitching of a muscle contraction from electrical impulse is one thing but keep inmind that the vast majority of the penis is not muscle in any form.
WOW! i had no idea this topic would become a hot debate. no offense hawk but i don't see why you have such a skeptical tone. i understand if you're concerned about the flow of information on here but i'm in no way advocating this therapy to others! my intentions were 1.) to see if anyone else has tried this or something similar and 2.) if not, keep people updated on my progress with the therapy and hope that i've stumbled across something that can benefit the Peyronies Disease community. like probably most of the guys on here i'm very self conscious about my "manhood." i got tired of turning down intimate encounters because of the Peyronies Disease and decided to take a chance. but back the topic at hand... i just finished another EMS session. i've been monitoring the plaque very closely in the area that i'm treating with the device and have noticed about a 25% decrease in the "hardening" of the area. as i mentioned before i had a very noticeable "hour glass" deformity that has pretty much disappeared which is the reason why i've decided to continue the treatment.
John,
I would not even refer to this as a boring debate much less a hot one. A brief review of the posts here will illustrate that we are largely a close community and that like each other and enjoy the freedom to express ourselves openly. There certainly is no chance of offense on my part from a post. Open, on-topic discussion was the entire reason for starting the PDS.
My skepticism should be very easy to understand. I see nothing more natural than skepticism. It is the basis of discovery of truth.
Because A follows B does not mean A causes B.
Most men see changes in plaque and they rarely use EMS
There are no studies designed to evaluate EMS and Peyronies Disease
There has been no other anecdotal account of improvement from EMS
Based on this there is no appropriate response except skepticism (defined as - uncertain and questioning attitude). Certainly it does not warrant an accepting attitude of certainty. That is the attitude that would be surprising and unwarranted.
I don't question that you detect a subjective absence of hardening of plaque. What is clear is that we have no evidence, much less proof that it is the EMS, that it would also decrease deformity, or that it could not trigger inflammation and increase deformity.
This is not an attack on you or on EMS. It is healthy skepticism that is essential if we are to find our way.
Goo luck and keep us posted.
hawk, i appreciate your concern but honestly i don't understand your ""negative" skeptical tone at all. the other member responses were of a positive and generally concerned tone. re-read your post and tell me if you disagree. look it's not rocket science... i'm trying this therapy out at my own risk. i know there isn't any scientific evidence supporting this therapy (that's the whole reason why i signed up here). i'm informing others about my experience with it both the positives and negatives (none so far) and would love to share my information with others. if every post i make is going to be criticized i much rather not post at all. hope you jump on board. JD
JohnDoe,
Please don't hold back on your findings...I think we're all interested to see if your findings are indicative of something that deserves further in-depth study.
If you look at Hawk's replies (especially his last), I think you'll see that he isn't skeptical that you're not seeing results, nor that you're trying to mislead us. He's following a
healthy approach that has been developed over many, many years of science--a single positive result is not indicative of a scientific fact. What you've found
may be something that
could help a lot of us with our problem--or it may be something that helps only you! As you keep us informed of your results, I'm sure that there will be others (I might be included at some point) who want to try out your methods. Then as more experience is gathered and
if the results are still positive, than we'll have something to recommend to other members and to present to the medical community in general.
You're among the first (if not the first) to contribute to this collection of knowledge, so please
please continue to contribute! As you do, I'm sure that there will be some people who think you've found a magic bullet, others (though probably not here) who think you're pushing 'snake oil', but most will be somewhere in between--hoping that you've found something great, but waiting for more results.
I'll end with a quote from Hawk's last post:
QuoteThis is not an attack on you or on EMS. It is healthy skepticism that is essential if we are to find our way.
Good luck and keep us posted.
Steve
John,
I only have control over what I say and not over what another chooses to infer. In this case you seem to almost want to see controversy, drama, or offense where none exists. At your suggestion, I reread with a critical eye what I posted. I see nothing "negative" nor could I read criticism into my post even with great effort. I am confident that the post was very clear to others. I did attempt to explain the skeptical view we all must have of every issue concerning Peyronies Disease coming both from members, and the medical community. Again, I can only take responsibility for explaining as I have attempted to do. I cannot control your understanding of what I post.
I fear that such sensitivity would lead to very limited dialog rather than the open dialog we all strive for on our forum.
My rule is: A gentleman would never deliberately offend me, and no other can. No one has intended to offend you and if someone ever does intend to offend you, that person is not worthy to be taken seriously. It is a good rule to live by.
In regard to "hope you jump on board" , I am not sure I understand that comment. Ideas, treatments, and theories, are not things we jump on board with. They are things we question, test, study, and prove. While I direct no skepticism toward you or your reports, I (like you I assume) am not at all sure EMS is a reliable Peyronies Disease treatment. I will be thrilled if it or anything else passes the tests, and questions, and is established as reliable treatment.
Regards
I, too, share Hawks skepticism. I have to tell you, though, I hope it works (as does Hawk I know). We have seen many inventive proposals for helping Peyronies Disease on this forum. Some good, some not so good. They have all been scrutinized. And, it is a good thing to advise against jumping in head first without checking the depth of the water.
One of the devices that has been questioned again and again and met with endless skepticism is the VED. Yet it has continued as the "preferred" treatment of many, if not most, men on this forum. I use it. But, I will still, on occasion, question its effectiveness. I believe that is a healthy thing to do.
BTW, If you check back on the forum, you will find the treatments and devices meriting their own topic have met with the most scrutiny. This forum is all about debate, presenting the positive and the negative (apropos for this electric subject). We can be up front and hard hitting (some actually resort to sarcastic humor...can you imagine) AND we do respect each other.
There are many many men here with many many opinions. Not everyone will agree with you on every subject. Hell, they don't even always agree with me and I'm always right ;).
Now my hard hitting question :). How did you measure the plaque to realize the 25% reduction? Please understand, I am not doubting your honesty. I just want to understand your methods. Also, please give more details about the topical collagenase you use. Where do you get it?
Liam
I think it is really important to note that in going back over this forum you can find a number of novel treatment approaches how towed that later turned out to be dead ends. I myself have been responsible for a few of these rabbit chases :-[. But I never fail to be excited about just the possibility that something might be effective. If some of you recall my recent escapade with Camphor, the fact is that it made one of my plaques almost completely disappear within a few days, but never quite completely wiped it out, and by now, of course it has returned. And gradually increasing skin sensitivity precluded continued treatment with the Camphor. On the other hand, a second area of plaque never responded to it at all AND of other people on this forum who gave Camphor a try, several experienced some pretty nasty side effects and none have reported any significant lasting benefit. That just shows how deceptive this disease can be. So that is my position. There is really a great unknown out there when it comes to treatment approaches. That is both good news and bad news at the same time. The good news is that there are a lot of stones yet unturned. The bad news is that one can never be sure what might be lurking under one of those stones. So, John, please do continue to keep us informed. Thank you for the information you have provided so far and we ALL REALLY DO hope you are on to something with this. But it is just too early in the process for all of us to 'jump onboard'. But if all goes well, you never know when someone else might decide to jump in the pool with you and give it a try. But I don't think that at this point we should be encouraging anyone to jump into this without giving it a lot of thought and realizing that there are potentially long term risks. So, John, PLEASE, don't take the skepticism personally. Have patience, try to use good judgment, and the result can be that we ALL benefit from this experience, EVEN YOU, EVEN if EMS proves to be a rabbit trail. Because, while it is important that we document what works on this forum, I believe it is EQUALLY important that we very carefully document what has been tried and DOES NOT work. That way, it will spare others the time and risks associated with exploring those attempts. - George
Note to Hawk: I would say once again, I am absolutely convinced that mobility (the deliberate flexing of the TA is important to its health AND is very likely to be therapeutic in terms of treating Peyronies. While you are correct that the TA, in fact, has no smooth muscle cells (or any other type of muscle cells for that matter), the underlying CC does have smooth muscle cells that could theoretically be stimulated and that could theoretically pass that energy in rhythmic fashion to the TA. One could argue, of course, that manual massage could be just as effective, but who would take the time for long to do manual massage thirty minutes per day? And it has actually been argued by some that manual massage is beneficial. - George
well i appreciate everyone's "two cents" but i'm sorry i don't think it's worth the hassle to log on everyday and have to defend each post i make. i was hoping to just "discuss" what i've been doing with others, answer questions and perhaps even start a diary to keep the members who were curious about the therapy updated. but like i said, if i have answer to critics 75% of the time i'm logged on, i might as well save myself the trouble.
hawk - just to clarify the "jump on board" phrase DID NOT MEAN to try the EMS therapy, i meant to contribute positively to the discussion that's all.
Liam - i noticed a significant decrease in the hardened area, i don't know how else to explain it, it used to feel like a baseball now it feels more like a volleyball, has a little more give to it, also please re-read the part about "no more hour glass deformity"
steve - i will keep the forum informed when i can, i was going to start a dairy but i'd just rather post here and there. i'll post every couple of months. this december would be about a year that i've been trying the therapy, i'll monitor my progress very closely and make a detailed post about my findings then.
George,
Is your use of the term mobility just stretching the tunica through erections, traction, VED? The term catches me off guard because I read every post and I don't recall a discussion of any other type of "mobility" being a factor unless you count massage.
In any case, I cannot envision EMS providing anywhere near the movement, stretch, or "mobility" of these other methods. If EMS is eventually shown to work, I would have to speculate that some other underlying processes are at work.
I see most of you here as simi educated research scientists specializing in Peyronies Disease. You may not all have that PHD next to your name, but considering the current lack of professional research being done on our condition it makes sense to listen to and see what happens. I do take into account that some men's Peyronies Disease will go into remission on it's own, while others will not. Additionally what works treatment wise for some may not work for others.
I do believe that it is important to allow the bit of skepticism. But first I look at what skepticism is and what it can be to others. To some people it is apprehension while to others it is disbelief. So please give leeway when deciding how one defines a comment. I try to step back and always go with the most affable definition.
That said, I realize this is a devastating disease and a hell of a lot more needs to be done about. It is unfortunate that I also believe that a sufferer of Peyronies Disease will be "the one" that finds "the cure." To this person, well... Hurry up damnit! :)
So please John, attempt to realize that Hawk is not being negative about your current chosen treatment nor is he criticizing you. He most likely is taking a wait and see attitude and I would bet that he is hoping for nothing but a positive result in your endeavors.
Hawk, If I have over stepped my bounds in attempting to explain this, please spank me. ;D
Johndoe
There were people around telling the Wright Brothers that they were crazy to attempt to fly. Don't be put off trying what you believe in but do keep things in perspective. I look forward to hearing of your continuing experiment with EMS
Regards
Percival
Please explain your use of collagenase. Where and how did you get it?
Liam
Liam, I didn't see John mentioning Collagenase anywhere. I even did a browser find search and the only recent references to Collagenase were yours. You might want to take a second look at his posts. He DID mention that he is using topical Vitamin E, but NOT Collagenase. - George
Hawk, I use the term mobility to describe motion. By motion, I mean everything from outright stretching to far more subtle physical disruptions at the cellular level. I realize that might be a whole new concept for many of you, but this is not the first time I have contemplated the concept. It IS the first time I have contemplated it in the form of EMS stimulation. I have enough experience with 'micro-motion' to believe that it just might be effective. As I said previously, I really don't want to go into details regarding this issue, but suffice to say, I have has some personal experience that tells me we should not ignore the potential this technique. That is not to say that I am confident that it will work, only that I am confident that it just MIGHT work. I certainly realize that it means plenty of extra work for you in trying to figure out where to stash this long string of slightly off topic posts. But progress always comes with a price.
I really believe that we have to be dreamers in a sense to make progress against Peyronies. We have to think outside the box and realize that the universe of potential solutions is so vast that we never know what we might stumble across. Most of us have seen so many things come along with what appears to be blockbuster potential, only to have their supposed effectiveness evaporate before our eyes. After years of this, we tend to become a bit cynical and that can be a disabling trap. Add to that that most of us have also seen a fair share of cruel hoaxes with people making claims simply in order to laugh at us when we grasp at the wind. And then of course there are the scammers that are constantly attempting to pick our pockets. All of this can suck at our hope and cause us to be overly cautious in terms of entertaining new possibilities that might come our way.
Let me tell you, I have very good reason for my overflowing optimism regarding Peyronies. Around five years ago my life was literally slipping away. One of the things that was driving me nuts was a disabling combination of panic attacks and heart palpitations. The heart palpitations were lasting for extended periods and causing me to be sick to the point of nausea. My doctor tried medication and it did not work and he told me that unless I was ready for some really draconian interventions, I should be prepared to live with it. And then, somewhere along the way, I had a problem with urinary tract infections and the medication prescribed really affected my stomach badly. In desperation I took Aloe Vera for my stomach. IMMEDIATELY WITHIN 24HRS palpitations AND the panic attacks were gone completely. The end of that was that the Aloe Vera CURED both problems permanently AND I have recommended it to a number of people and it has worked just as well for a number of them. So, believe me, there IS a cure for this out there and it is just a matter of finding it and communicating it.
We have a HUGE advantage over the researchers in this regard, since they are very restricted in what they can pursue, they are constantly needing to find funding AND volunteers for their studies, and as a result, tend to move forward at a snails pace. If a vendor comes up with a patentable product, research funding is guaranteed, but where would the money come for research on something as simple as EMS? The cost of research is huge due to all of the liability and such, and who in their right mind is going to fund the testing of a product that can be purchased from one of multiple vendors? Thus a whole range of possibilities is largely ignored by the research community. We NEED to at least take interest in the possibilities and encourage those brave souls who are willing to put themselves on the line in order to investigate them. I take my hat off to John for pursuing this technique, but I think he needs to have a thicker skin and simply continue to share what he is discovering. -George
It was a typo in the original. That explains the trouble finding it. Maybe it isn't a typo. Maybe its another product? ???QuoteVoting Member
Offline
Posts: 8
Re: Surgery for Peyronie's Disease
« Reply #266 on: June 21, 2007, 11:44:07 AM » Quote Modify Remove Split Topic
--------------------------------------------------------------------------------
thanks Tim i really appreciate your reply, it sounds like to me you know what you're talking about especially the part about the suspensory ligament being "medial"... as for hawk the story about the pipe... that story doesn't hold water in this case because the penis is not one connected organ (pipe) it has two sides that inflate. i was simply just inquiring if it was possible to lengthening just one of the sides to make it the same length as the other. my next step was to ask a physician but i'm always cautious of asking stupid questions, i thought i'd try here first. as for what's been working for me, i have my own regime i made up after researching some of the basics about plaque etc. that consist of vitamin e (orally and topically), cologense (topically), and my personal secret... ems (electric muscles stimulator) twice a day for 20 minutes. been using that for about a year now and have seen dramatic improvements went from a 30 degree bend to where i'm at now 15 degrees. the elasticity is the thing that's improved the most, i used to have a hour glass and that's pretty gone away.
George,
QuoteI have enough experience with 'micro-motion' to believe that it just might be effective.
Is this related to vibration, harmonics, natural resonating frequencies, etc? I am casually familiar with this concept. It has me intrigued.
I remember that post - ;D
Just to clarify I was using Collagenase but I ran out and didn't want to go back and get another prescription for it. It's also too expensive to keep as part of my regime which is actually the reason why I desperately sought other means i.e. EMS. I figured the machine only cost about 50 bucks and it last pretty much forever, just have to replace the batteries every once in a while. Vitamin E I can get at the store anytime for about 7 Bucks.
Note: Obviously I stressed the point that I'm in no way advocating anyone else to try this I think we all got that point, I also want to stress the fact that what might work for one person may not for another. I don't believe that there is one type of Peyronies Disease. I believe each of us have individualized cases and finding a "cure" is going to come down to trial and error anyway.
LAST UPDATE (Good News Bad News): I noticed that immediately after use of the EMS my penis in the flaccid state "hangs" pretty much straight as an arrow and my erections are "straighter" and stronger immediately after use (The Good News), unfortunately (and I'm not worrying about it yet) after about an hour or so my penis tends to return back to having a slight bend in the flaccid state and my erections are less straighter and not as strong. Like I said before, time can only tell if I've stumbled upon something. I saw a significant difference in the first 6 months of use and seemed to have plateaued a bit lately. I feel like the one year mark would be a fair indication point to see how the therapy has worked out. I'll post again when that time comes, I wish all the members here who suffer from this horrific disease the best, and sincerely hope that a "cure" is found soon so we men can go out into the world more confident and comfortable with ourselves.
JD over and out
John, fyi: Pentox is probably a whole lot less expensive than Collagenase and it does work if given enough time. Have you ever considered it? For the record, I am not using it, but I might consider it in the future. In any case, thanks again for taking the time to post all the good info and welcome to the group. - George
I was diagnosed last month as having had Peyronies Disease for 10 months. I am scheduled for surgery next month, in Denmark where I live, to correct a not painful L-shape bend.
Britain's NHS website says of the disease: "in most cases the condition will eventually disappear without treatment." (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875)
A lot of what I've read here says avoid surgery. Other sites says surgery is the last resort and only after time.
My wife thinks it is getting better.
Can it get better all on its own? I have not read this anywhere.
Cooperman
cooperman,
1) I think that the NHS claim that Peyronies usually corrects itself is way too optimistic, although that does sometimes happen.
2) I think that ten months is way too early to be thinking of surgery. Surgery is basically irreversible and at ten months, your case has not really even had time yet to run its full course. Also, the relatively inexpensive generic drug Pentoxifylline has helped some when used for an extended period of time without the risks of surgery which can always be performed later if that becomes necessary. And this is not even taking into consideration the many other effective alternatives such as the VED. In your case I would definitely be looking for a second opinion that would provide non-surgical alternatives.
- George
QuoteThe exact cause of Peyronies disease is unknown, but in most cases the condition will eventually disappear without treatment. However, in some cases surgery may be required to remove the thickened tissue.
Now I can be a little nasty.
What kind of idiotic organization spreads that kind of crap. >:( It is so far from the truth it would be laughable, except for the fact there are men out there making decisions based on this garbage. I only wonder how many other diseases they got wrong.
The truth is it almost never (I'm being nice here Hawk) goes away.
I agree about using Pentoxifylline. Try a VED for a while. Save surgery until you've tried everything else.
Please don't rush into surgery! I have had peyronie's for about 3 1/2 years now. While some aspects of my condition have improved greatly, I still have the curvature. The area of plaque continues to change in size & location.
I have had Peyronies Disease over 3 years and I am not confident that it is stable. It's weird somedays the plaques feel large and other days small and soft. I do believe that pentox is helping. But I have never considered surgery. Isn't surgery adding more trauma?
You said it, brother. It is the "de-gloving" :o that gets me. OUCH!
Back on the farm, I remember when we used to de-glove a hog right before a big family barbeque.
;)
Cooperman
Thanks for highlighting the grossly erroneous information being given out on the NHS Direct web site in the UK.
I have been paying into the NHS for 40+ years, and to read this kind of BS makes me extremely angry to say the least.
I phoned them to point out their error. A lady called Sue (no surname given) rang me back. She was a health information adviser based in the East Midlands and said she would pass my comments up the chain and someone would get back to me in the next day or so.
The telephone number is 0845 4647 (international 0044 845 4647) if anyone else would like to give an opinion on "in most cases the condition will eventually disappear without treatment". If only!
Regards,
Percival
The NHS rang back and told me that I was complaining in the wrong way, and that I should send my complaint by e-mail to: http://www.nhsdirect.nhs.uk/contact/ (http://www.nhsdirect.nhs.uk/contact/)
I have done this, and suggest that anyone wishing to follow it up does likewise, as telephoning them is a waste of time.
Regards,
Percival
I may be wrong, but it seems its easier for them to delete an email than to talk to a human being.
Just me being cynical. ;)
Nobody
Home,
Sorry
Mark(501) sent me this study to pass along. Interesting stuff!
Thanks Mark!
Quote1: Arch Esp Urol. 2007 Apr;60(3):326-31.Links
The natural history of Peyronie's disease.Grasso M, Lania C, Blanco S, Limonta G.
Department of Urology, Desio Hospital, Milan, Italy. marco.grasso@aovimercate.org
OBJECTIVE: Many physical or medical therapeutic approaches, systemic or local, have been suggested for treatment of Peyronie's disease. These approaches claim a discrete percentage of success in terms of clinical stabilization or improvement. The aim of our work was to evaluate the "natural history" of this disease. METHOD: 110 patients affected by Peyronie's disease have been observed for at least five years. At the first visit all patients maintained sexual activity not requiring surgical approach. No medical or physical treatments have been performed on these patients. All patients underwent twelve months follow up for at least 5 years evaluating the natural progression of the disease by means of ultrasound and clinical examination. We made statistical analysis (Odds ratio, P for trend) to check if there is association between clinical worsening requiring surgical treatment and: 1- age of patients, 2- diabetes, 3- presence of close relative pattern for diabetes and 4-Dupuytren contracture. RESULTS: Regarding curvature, number and size of fibrous plaques, a consistent tendency to stabilization has been observed in the group of patients above 50 years of age. 68% of the patients belonging to the group under 50 years showed a progressive worsening of the disease requiring surgical therapy, while in the other group only 31,5% of the patients required surgery. The statistical analysis confirmed that Peyronies Disease worsening is more probable in the group under 50 years of age (OR=3.5, CI:2-8) and in the patients affected by diabetes (age adjusted OR=6, CI:2-19). Statistical analysis has not shown significant differences in the evolution of Peyronie's disease regarding the presence of close relative pattern for diabetes and Dupuytren contracture. CONCLUSION: The patients presented a discrete tendency to spontaneous stabilization. The patients who are diagnosed under the fifties have a greater probability that the disease will worsen, requiring a surgical approach. The data regarding the natural history of Peyronie's disease in not treated patients should induce caution in awarding efficacy to new pharmacological and physical treatments.
PMID: 17601314 [PubMed - in process]
Hi everyone
I am 28 years old and I live in Australia.
I am approaching 10 months with this disease, and at the moment it seems quite active.
I have seen two Uros, one a professor, and nether has taken a pro-active approach. I have been told to take vitamin E and wait for it to go away. I explained that I am experiencing soreness in the areas of plaque and increased sensitivity and discomfort in my penis while it is flaccid, and that these sensations a virtually constant.
The professor refused to accept that this was a symptom of peyronies. He simply said that it was not part of the disease. He also did not explain things such as active and stable stages. I have had ultrasounds and peyronies is definitely present.
Is it reasonable to attribute the discomfort I am experiencing to peyronies? or is the professor right?
Also, as it appears that I am in an active stage, what oral treatments would you all recommend for me? I have read that this is an opportunity and that I should not do nothing. I would like to focus on treating the pain and discomfort, it torments me so much, that I can not function properly, I have suffered from anxiety disorder all of my life, and the constant sensations from my penis are triggering attacks.
I would be greatful for any advise.
Thanks
AJB
How did it get there in the first place were it not "active"? Pain is a symptom. Yes the area with the plaque can hurt constantly. Discomfort while flaccid is easily explained because your penis is CHANGING. Naturally it will not "ride" the same in you boxers. ;) That is UNCOMFORTABLE. Many of us get the "turtle effect" (our term on the forum) when the penis partially withdraws. I use a traction device a couple of hours at night (see traction topic). After a few days of traction that will go away (mine stays away unless the Peyronies Disease gets worse).
Use NSAIDS. Get a VED (forum fav cause it seems to help). Try to find a doc that will give you pentoxifylline (Trental) and Viagra (25 mg nightly). Take l-arginine. Check out the Highlights section of the forum ( https://www.peyroniesforum.net/index.php/board,18.0.html ) Tell the professor to go back to the island with Gilligan. I think he's a couple of coconuts short of a creme pie. http://www.gilligansisle.com/
Good Luck
Liam
Welcome to the forum AJB.
I concur with Liam's comments. Hopefully they were all clear except the Gulligan comment. Hopefully Australia was spared that TV series.
While there are many other things that may help, one that I would add to Liam's recommendations is Acetyl L-Carnitine and maybe a broad spectrum vit E. I add vit E only because some others seem to think it is effective.
Hawk
Welcome ajb! How could I ever hope to improve on the advice you received from Liam and Hawk? Well that would not be easy, but I am going to try to expand on it a bit.
PENTOXIFYLLINE
First of all, the next time you see a urologist, you need to have a better understanding yourself of Peyronies and the issues involved. Obviously you are working in that direction or you wouldn't be here. I can not tell you how much it will help you if you have all of your ducks lined up when you see the doc the next time.
1) Be ready to "drop names" when you suggest Pentoxifylline. Start with Dr. Tom Lue from University of California San Franciso Medical Center, a noted expert on Peyronies http://urology.ucsf.edu/faculty/facLue_Interest.html (http://urology.ucsf.edu/faculty/facLue_Interest.html). Dr. Lue has done research on Pentoxifylline and found it to be useful in the treatment of Peyronies http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html (http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html) . Other noted doctors have prescribed Pentoxifylline as well and you can find some of their names listed on this forum. Don't be afraid to provide contact information for your doctor for one or more of these experts.
2) Be ready to inform your doctor that Pentoxifylline has been used effectively against other forms of fibrosis, yet another indicator that it might be helpful against Peyronies http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17395040&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17395040&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum),
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17217216&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17217216&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum),
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16236376&ordinalpos=18&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16236376&ordinalpos=18&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum).
Don't be afraid to print some of this out to show to your doctor.
3) Be ready to inform your doctor that Pentoxifylline is a long established generic drug with a good safety record and is very affordable, making it appropriate for long term use to treat a condition like Peyronies.
4) Understand that the one most promising drug for treating Peyronies IS Pentoxifylline. Viagra has been shown to be helpful, but it is a very expensive patent drug. But the good news about Viagra is that many people are able to get much of the same benefit from a common herb, "Horny Goat Weed", and in fact there are people on this forum who are using this combination. The other component mentioned was Arginine. Arginine is also availabe as an Amino Acid supplement without a prescription in most parts of the world. The best Arginine formulation I have found, hands down, is SAN VasoFlow http://www.sann.net/vasoflow.html (http://www.sann.net/vasoflow.html). Its expensive, but I have found it to be worth the money, and you won't have to take as much of it to get an equivalent effect.
5) I would definitely consider taking a good Full Spectrum formulation of Vitamin E (like GNC's Isomer E for example) along with the above. You should discuss the proper dosage of Vitamin E with your urologist.
DIET AND INFLAMMATION
One of the things you really want to attack is inflammation. This is what is causing the pain. There are key dietary triggers for inflammation that you need to be aware of. These are FATS and OILS. Fats and oils can be either inflammatory or anti-inflammatory. The best anti-inflammatory fats are derived from Fish. The most inflammatory fats are derived from red meats like Beef. Other white meat like Fowl is in between. Therefore a diet high in Fish and low in red meat like Beef is helpful in reducing inflammation. A similar situation exists with oils. Olive Oil is very anti-inflammatory. Corn Oil is very inflammatory. Other oils lie somewhere in between. So a diet high in Olive Oil and low in Corn Oil will be helpful in reducing inflammation.
- George
Liam, Hawk and George
Thank you for your advise and prompt replies.
I think that I will have to try and convince my GP to give me Tental and Viagra, my Uros saw me once or twice and told me not to come back. They never discussed treatments or anything, just Vit E.
In Melbourne, there are not that many urologists, and the chances of finding one who has interest with peyronies is unlikely.
Liam - I have seen this mentioned a few times but I am still unsure as to what NSAIDS are. Can you point me in the right direction?
Hawk - Unfortunately we were not spared from Gilligan or his antics, also I think we had a cartoon version as well *shiver*. I saw that you have mentioned L-carnintine, is that a powder, liquid or tablet? and what is the recommended dosage? I have no experience with these types of products. Any additional info is appreciated.
George - thanks for the tip re: horny goat weed and Vaso flow, i will look in to these further.
Thank you all again
AJB
Non Steroidal Anti Inflammatory Drugs.
http://en.wikipedia.org/wiki/NSAID
If your doctor tells you not to come back to see him, that is probably good advice. Go find another one. ;) Sydney is a big city. They must have some good urologist. It is about 850km from you. Thats about the distance from Mobile, LA (lower Alabama) to the Mouse (the one with a theme park in Florida). Try contacting:
The School of Biomedical Sciences, Faculty of Health Sciences, The University of Sydney, P.O. Box 170, East Street, Lidcombe, NSW, 1825
St. Vincents Clinic, Department of Urology, Syndey, Australia
University of New South Wales, Australia
These would be the places I would start.
Good Luck,
Liam
BTW, My doc says come back any time you need. We are always happy to see you..........
And, oh yes, bring money when you come.
I'm 20 years old and have had peyronie's, i believe, for 7 or 8 years now (not exactly sure when it started). I never treated it because I did not know what it was. Is there anything I can still do to treat it or is it too late for me to do anything? I started about two weeks ago taking Vit E, C, PABA, MSM, Bromelain, Quercetin, and Omega-3, but I feel it's a bit late to start with oral supplements. Thacker's maybe?
My peyronie's isn't too bad, a slight bend to the left and 10 or 15 degree bend up when erect, although i believe the bend up was partly or totally natural. In fact, it seems to be more bent when I am semi-hard than completely hard (weird right?). I have what seems to be a long, hroizontal plaque at the top of my penis below the head, and experience no pain when having erections. I just wish it was more straight so I could have a pecker like everyone else my age.
Thanks for any help.
Barkstalk
Have you been diagnosed by a urologist? If you had this since 12 or 13, it is probably a congenital curve. That means it is a different cause for the bend. Check with your urologist. Make sure to tell him the age of onset.
This is one example of a condition causing congenital curve.
http://en.wikipedia.org/wiki/Chordee
I am NOT saying this is what you have. There are several conditions that cause curves. I dug this one out first, thats all. Just check with a doc before starting self treatment.
barkstalk, I agree completely with Liam. Self diagnosis is NOT the way to go. You need to get checked out by a good urologist who can make an objective diagnosis. Without that, you are swatting at the wind. If it does turn out to be Peyronies, it is NEVER too late to start dealing with it, but making it better will take a lot of determination and discipline and will take a long time. But you do need to find out for sure if that is what it is first. - George
Barkstalk,
Welcome to the PDS forum. I have little to add to Liam's response except to address one of your points. You said
Quote from: barkstalk97 on July 15, 2007, 03:51:55 PM
I just wish it was more straight so I could have a pecker like everyone else my age.
That is a bit like saying I wish I had an ear like everyone else. I am not suggesting that your penis is not significantly deformed since I have no way of knowing. From your description however it seems to be pain-free, capable of erection, and fully functional. If your condition is stable and not progressive, see a urologist to get a medical opinion and then enjoy life and revel in the fact that there is no standard penis. There is no official penis judge that can say what constitutes a perfect penis. If there was, who knows, you might win the blue ribbon.
Quote from: Cooperman on July 09, 2007, 10:29:33 AM
Britain's NHS website says of the disease: "in most cases the condition will eventually disappear without treatment." (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875)
Cooperman
The NHS Direct page (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875) (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875)) has now been altered and the statement claiming
"in most cases the condition will eventually disappear without treatment" no longer appears.
I assume they received a number of complaints from this forum following your highlighting the error. They did not reply to my complaint, but the main thing is that they have corrected the web page.
Regards,
Percival
Cooperman quote added by the forum administrator
Hawk
Score one for the Peyronies Disease Community.
Thanks to Cooperman and all that contacted the NHS! This is no small thing and it is only a glimmer of the impact we can make in the area of education and awareness.
Hawk
Bully! Bully! Bang Up job! ;D ;D ;D
Quote from: George999 on August 14, 2007, 10:57:53 AM
...By pointedly dealing with that issue, I saw an immediate reversal of that resurgence and a very marked retreat in the plaques to almost nothing. The daily ebb and flow that I have observed also fits this pattern. The plaques seem more pronounced in the evening and virtually gone in the morning.
Does the degree of curve vary any with plaque size? How about pain?
Liam
George,
I am baffled by your change in plaque within a matter of hours. Plaque as I understand it is scar tissue. for it to actually change requires tissue replacement which is a slow remolding process. The cellular composition of plaque could not possibly change in anything approaching this rate.
Do you think, or did you mean that it simply felt different because of degree of blood flow or erection?
Hawk, I am just describing what I am observing. I have two areas of plaque. One area has always been much more stable. It is the area that seemed to respond to the Camphor. It is really reduced at this point and stays that way. The other area has been much more dynamic. To be honest with you, I don't even know for sure that it is truly plaque. Perhaps it is just Peyronies related inflammation. In any case I can note pronounced changes in it through the day and it got very "large" during the time I increased my sugar intake. Reducing the sugar intake reduced the size of these anomalies. So I myself really don't know what is going on here, but in any case, I believe that the less I can "feel", the better and I really want to pursue a course where, if possible, all of this stuff will just disappear and at that point I won't really care what it was! - George
George, you seem to be describing "induration" (remember that the older name for Peyronie's is "Induratio Penis Plastica (IPP)" or "penile induration" ).
Induration is defined as a firm swelling that feels fibrous or dense - it literally means the process of "being hardened".
So, I think that induration that comes and goes is certainly not calcific, and probably not "fibrous" meaning characterized by (lots of) fibrotic dense collagenous tissue, but is more likely abnormal tissue (still probably fibrotic) that has some vasculariztion that allows swelling and shrinking of soft tissue. It seems by your history that it is almost certainly inflammatory.
Tim
Tim, I suspect you are probably absolutely right on this point. And it makes me wonder how many "plaques" are simply not palpable at all, but are only detectable by the inflammation that accompanies them. In any case, "plaque" definitions aside, I still maintain that any approach that effectively extinguishes ANY penile anomalies is of value. Inflammation, induration, plaque, whatever, if we can get rid of it, we should definitely move in that direction, because that is the direction that will lead us to the elimination of the fibrous tissue itself which actually owes its existence to an ongoing inflammatory process. - George
Quote from: Liam on August 14, 2007, 09:28:29 PM
QuoteThe plaques seem more pronounced in the evening and virtually gone in the morning.
George,
Does the degree of curve vary any with plaque size? How about pain?
Liam
Liam, the radical change I have seen in the palpable anomalies does not affect the degree of curve in any way. But the point of curve is directly in the area where these anomalies lie. I have had the anomalies disappear completely at times, leaving absolutely nothing palpable, but the curve is still there. As for pain, I ain't got no pain bro, lumps and curves but no pain. My pain after two major occurrences, disappeared a long time ago and has recurred briefly only a few times since. - George
I have just been diagnosed with Peyronies Disease. I noticed the plaque on shaft of my erect penis for many years,but I didnt know what it was. I thought it was normal. About 6 days after having a coil embolization for a varicose vein on the left testicle, I got an erection and noticed a very slight change in shape on top near middle of shaft. It was so slight I thought I might be imagining it. I saw my urologist who said it was Peyronies Disease. He told me to take 400iu of vitamin E and come back in 3 mos. I am really scared by all I have read on internet. I also sometimes have a painful erection. That has happened occassionaly over the years, I didnt think much about it at the time. Right now there is almost no deformity, but Im scared to death that this will progress. what are the chances of this happening. What can I do? Im hoping a peyronies physician will read this and reply.
I'm not a Peyronies Disease doc, but I suggest you find one. If you have had the plaque for several years without deformity that is promising that it may not progress to the point you can't use it. It is impossible for anyone to say, though.
How old are you and how many years have you had it? Did you get the plaque as a result of a trauma? These are important questions to diagnosis. For example, if you had it since age 10, it is probably congenital or another condition which may not be progressive.
I believe I have Peyronies Disease since last May, when I woke up one day and realized that I had a hard lump under the head of my penis. It goes away sometimes for a while and then re-appears when I have sex or intercorse to much. It is right under the head of the penis on the lower side. Is this common or rare. Most that I have read say it is on the shaft. Also, it causes a vein in the head of my penis to become larger than usual...is this because of strained bloodflow? Normally I can't see it when I am not hard, but lately it has been there. Just wanted to know your thoughts.
Thanks
And when i say under the head...i actually mean the lump is technically on the shaft, but it borders where the head of my penis begins.
Peyronies Disease plaque does not come and go. Unfortunately it comes and stays. It could be sometimes you don't notice it or you may have something else going on. The best thing to do is see a doctor.
Also, I have never heard of the "vein thing" with Peyronies Disease. There are conditions of blood or lymph vessels causing "hard areas". Make sure to write down all these symptoms before you see the doc.
Keep us posted.
BTW, is your username like the country in Africa?
Liam
Yes, it is like the country, I served in Peace Corps in Gabon.
As for it coming and going, sometimes I don't feel it there and it takes awhile after I have an erection to show itself or if I have sex many times, it stays around or is more noticeable. As for the vein, it just looks larger because it runs right beside the hardened area. I tried to tell my doctor about it but when he looked at the area, it was not noticable. I guess I should take a picture to show him?
I am not sure where to put this email but....four days ago I noticed an indention in my penis. I thought, what the heck is that. Looked it up, found your site, checked for the nodes.....today, four days later, I have our favorite disease. Not much time to accept it. Had never heard of it and never had a problem. Now I'm freaked out and don't want to have sex with the women I previously were having sex with almost daily.
The urologist said don't do anything for a few months, take V-E, come back later. so after reading your advice, i made an appointment with a real Peyronies Disease doctor, but it's three months from now.
any advice for acceptance? I went out and bought Isomer-E and L-Arginine. Then ordered larger supplies of the stuff I have read on this site.
Thank you so much for having this site. It is the one place i can turn to right now!
You're doing all the right things except stopping sex. It may feel natural to do so, but I would advise talking to your partner, sharing with her your worries, and seeing if she is willing to help you have frequent sex to keep it working! Seriously, without being honest with her, then there is no reason to be with her in the first place (except sex), so if you want to Man Up, talk to her, be honest, and see how it plays out. I predict that A) she will not have noticed it otherwise, B) not worry about it, C) reassure you that you are loved, and D) help you realize that your self-esteem can stay intact even with this problem.
Tim
hunerdiamons
You are on the right track. Do Not Stop Having Sex. It will not make anything better the penis needs regular use.
Good luck with the Peyronies Dr. and keep an eye out for scar tissue in the copra, if that happens notify your Dr.
My Peyronies started 12 years ago and has developed over the years into severe ED. I've been married for 39 years to the same lady and her response to me was. "I did not marry you for your penis." I bet your sex partner will feel the same.
Good Luck and let us know how you progress.
Jackp
Hunterdiamon,
Tim and Jackp gave you great advice.
I would add may be see if you can get your current Urologist or family Dr. to prescribe Pentox which is generic for Trental. This oral medication may be a good first step to stop progression.
Good Luck,
Pal
I have been in the active phase for six months now. I have had lots of stinging pain in the penis above and below scrotum for four months now. I have lost four inches in length in the past three weeks. Three inches in the past seven days alone!! Only yesterday I began using the traction device.
My questions are:
How long does the "active phase" last?
Will wearing the traction device durring the active phase exaserbate the condition.
tunica,
I have never heard of progression that fast. Go to a doctor and get a full evaluation including an injection-caused erection to determine what the true extent of your problem is objectively. It is more likely that you are not getting fully hard. If you are, but are truly shrinking that fast, then why would you do anything OTHER than go to a doctor emergently?
If you are getting fibrotic changes that quickly (hard to imagine that) then you probably need the opinion of some of the worlds experts like Tim Lue in SF. If it is determined that you are developing rapid fibrosis (ie as could happen after a bout of priapism) then you need to get on the right medications.
Tim
My Doc is Levine in Chicago. I saw him six months ago and he stretched out my penis and took a measurment. He commented " you have a lot of stretch, a lot of men have none." The pain got worse, all in the tunica. He ran lots of blood tests, I even took a MRI because my only symptom was pain, no shrinkage or e.d.
Then BAM! three weeks ago the shrinkage started. Like I said last week I lost three inches. After all the pain now the damage surfaces.
I forgot to ask Levine what is the time frame for the active phase? Does anyone here know?
Thanks for your response Tim468.
...
<<<I have been in the active phase for six months now. I have had lots of stinging pain in the penis above and below scrotum for four months now. I have lost four inches in length in the past three weeks. Three inches in the past seven days alone!! Only yesterday I began using the traction device.
My questions are:
How long does the "active phase" last?
Will wearing the traction device durring the active phase exaserbate the condition.>>>
tunica
If you are having shrinkage that fast get to a Dr. ASAP. I would say you have an emergency. Shrinkage usually takes months or years.
Peyronies active phase is usually 12 -18 months.
Jackp
I have seen Levine three times in two months. He already cleared me of any other possible ailements. But I will make another apt......
I have had the pain for months, the shrinkage took months to catch-up...
So I have to wait 12-18 months for the shrinkage and pain to stop?
And does wearing the fast size stretching device durring the active phase
make the problem worse?
...
<<<If you are having shrinkage that fast get to a Dr. ASAP. I would say you have an emergency. Shrinkage usually takes months or years. Peyronies active phase is usually 12 -18 months.
Jackp>>>
Tunica,
Peyronies is very unpredictable disease. Having said that, may be all is not really lost since it has been a short time. Also, some of us are on Pentox. Pentox has shown in small studies to stabilize and improve the disease. It remains to be seen if it is the effective treatment we all hope for, but may be you could get you Uro to put you on it for a while to see.
Good Luck,
Pal
Estimating the duration of the "active phase" of Peyronies Disease is much like asking the general question of the likelyhood a dog will bite. The question is: Whose dog, under what circumstances, at what stage of his life, bite who.
People throw the 18 month figure around but but the active phase can last from 4 or 5 months to years. It can reactivate several times in a persons life and there are those here that think Peyronies Disease never totally goes inactive.
The lesson from this is that you cannot grit your teeth and wait this out. Also, about loss of length, since erections vary greatly in quality (especially when stressing about assessing your penis), the best practice is the stretched flaccid length. Stretched flaccid length is a consistent gage of real length.
Guys,
Thanks for your responses. I appreciate it enormously. About my stretched flacid length it has shrunk 3".
Levine had me take a MRI to rule out other problems...I just saw on television that (contrast die) used with MRI's can induce fibrosis. The nunber to call to talk to a atterney is 1800 bad drug.
I recieved the contrast die with the MRI. Has anyone heard about this die exaserbating P.D.
I doubt that the fibrosis is related to the MRI. The problem with dye is described below:
"The disease is known as nephrogenic systemic fibrosis or nephrogenic fibrosing dermopathy (NSF/NFD), and appears to only occur in patients with kidney disease who undergo an MRI or MRA where a gadolinium-based dye is used (1).
These dyes, known as "contrast agents," are commonly injected into patients shortly before they undergo MRI or MRA scans. MRI and MRA scans are frequently used as a non-invasive procedure for doctors to see inside the body to look for many problems, such as tumors, internal organ complications, clogged arteries, brain irregularities, and more.
The FDA (Food and Drug Administration) states in a public health advisory, "Patients with moderate to end-stage kidney disease who receive an MRI or MRA with a gadolinium-based contrast agent may get NSF/NFD, which is debilitating and may cause death (1)."
It does not sound like this describes you. However, it would be wise to avoid such a procedure in the future. You should raise the concern with Dr Levine also.
I will dig a bit into the mechanisms of this problem to see if there is any theoretical way one could imagine Peyronies arising from this agent.
Tim
If you lost 3 inches of flaccid length, what did you start with? Is this half, 3/4 or more of your normal? Three inches loss is way, way outside the norm.
Liam
3 inches seems extreme. I've lost around 20% which my research is about average. 3" flaccid loss would have been about 7" flaccid b/4 loss.
Quote from: jackp on November 22, 2007, 12:48:30 PM
Liam
3 inches seems extreme. I've lost around 20% which my research is about average. 3" flaccid loss would have been about 7" flaccid b/4 loss.
Jackp,
I must be missing your point on this post or your math. 3' loss on a 9" penis is a 33% loss. 3" loss on a 12 " penis is a 25% loss which is somewhat within typical range for a loss percentage. While that may upset the guy experiencing the loss, he would not be likely to get a lot of sympathy. ;)
I believe that men typically lose some length, and it is not so related to the original length of their penis, but more related in absolute terms. Most guys lose about an inch or so, not "20%". And although I may wish I had started with 12 inches (for ten and a half inches only partly hard sounds - still - pretty good to me), we all know that for any man who loses his erectile function and shape it is a horrible thing. The guy with a big penis will suffer just as much as the guy with the smaller one, IMHO.
This discussion is the reason I asked the question. :o Three Inches :o
Hey guys,
I was lying on Levine's exam table, he stretched my penis out, he commented that at the time I had good stretch length saying many men with p.d. do not stretch at all when their penis is pulled for measurement. From the base of my pubic bone to my corona the stretch length was 7".
Now when pulled for measurement my penis barely stretches at all and my length is 4".
I am really in shock, there is no other way to put it. I feel something new running the length of my penis especially underneath. It feels like several tight strings inside, and it does not stretch. I use the VED and the freakin' traction device and those hurt sooo much. I feel if i do not wear the traction device the scarring will pull my penis in so tight to my body...which is where it is headed. I can't stop this disease. It is scarring so fast and with so much pain.
I take pentox x 3 daily, cialis ten mg. every other night, vit E 100 i.u. six times a day, arginine x 3 daily and acetel L carnitine 2 x day. I'm doing everything I'm suppose to do but I am loosing the battle. I experienced the symptoms of pain for five months and only shrinkage in the last month. Guys I cry at night. Why am I experiencing so much pain.
Thank you gentlemen, you are all I have at this point.
tunica,
Hang in there. Be sure to take some antiinflamatory medication like Advil on a regular basis. It may not affect the course of the fibrosis (though it may, too), but it will reduce the pain. Also, I find soaking in hot water to make pain feel better and to make stretching easier.
I will pray for you to heal.
Tim
Hawk
My math may have been off but that was not my point. Guess I missed it.
In my 20's I had a friend that his claim to fame was his 9" penis. Most of us average guys were getting more than him because a lot of the girls were scared of him.
These post made me think of him after 40 years and he has moved to another area of the country. If he had lost 20 to 25% of 9" he would have been devastated, us average guys with 5.5" with a 20 to 25% loss feel the same.
My point: No matter how much we start out with the loss of penis size it at least troubling.
My saving grace is my wife who is very supportave. Even with Peronies and all the ED problems she has never complained and continues to make sure we both have a satisfying sex life even though penetration is no longer possible.
Guys your wife, GF or other may be more supportave than we give them credit for. Give them a chance and you may be pleasantly supprised.
Jackp
Quote from: jackp on November 25, 2007, 04:31:43 PM
My point: No matter how much we start out with the loss of penis size it at least troubling.
I guess I missed your point. I fully agree with you on that point. I am somewhat in that situation, in that I started with very ample size and am still well within the normal range. I would have felt just as bad if I had gone from a foot to 8 or 9 inches. My loss from large to normal could have driven me mad at time if I had let it.
The truth is that for whatever reason, I am not tortured by it any more. I have somewhat adopted the attitude, "it is what it is" meaning there are some things I can change, and some things I can't. I can decide to try treatments, and I will. I cannot however determine the outcome of treatments and I cannot obsess over the outcome. I have too many things in my life at the moment that I can make a huge difference with to obsess over the one or two things that are beyond my control.
Guys, I was trying to see percent loss. A man who started with 4 inches and then lost three inches would have lost 75% of his size. But tunica lost 57%. This is equivalent to 2.28" in the man who started with 4".
If we talk about how many inches loss, the discussion has less meaning than if the discussion is in percent. (The amount you lost) divided by (the amount you started with) will give this percentage as most of us know.
Tunica, did you have the same percentage loss to erect length? Read some of my posts in the traction topic. I had great improvement in flaccid length.
Quote from: Liam on November 26, 2007, 05:31:32 AM
A man who started with 4 inches and then lost three inches would have lost 75% of his size. But tunica lost 57%. This is equivalent to 2.28" in the man who started with 4".
I quickly read this sentence 3 times to calculate if I was dumb in math of if Liam was developing a new theory on Peyronies Disease progression. How could a penis shrink by 75% and
the tunica shrink by only 57%? I then realized that "tunica" refers to our member by the name of tunica, not the structure of the penis by the same name.
Tunica,
I think I have to insist that you change your member name. Using terms like proper names of penis structures, or medical names such as peyronies, plaque etc as member names will only cause untold confusion on the forum. If we got a few such names our posts would began to sound like the classic "Who's on First" comedy skit. It will also confuse forum searches on topics. Many people that come here have difficulty with the English language without the added confusion such member names can cause.
If you will kindly pick a new member name and let me know, I will fix any existing posts. This will not impact your sign-on name or password but only your display name on the forum.
I will be posting a new rule in the "Read this First" area of the forum.
Gentlemen,
If Tony is not taken I'm okay with that name. Sorry for any confusion.
Guys Levine gave me Mobic as a anti inflammatory for pain. It still hurts so much.
The measurement I give is flaccid. I haven't had a erection in a little over a month. And that scares me so much. How can I adjust to not getting erections. What can I read that will help me adjust. I have been talking to a councilor. I am sick of talking to her now. I want to be well already.
Is there anything Levine can do for me now. I do have plack beads inside also I have rings of scar circling around and around my tunica. I have the feeling the progression won't stop until all the healthy tissue is eaten away.
tunica:
Tony has been taken. You can click on the members tab in the tab bar to locate a name that would be open for you. It lists all the members there.
There is a Tony and a TonyB already listed. You should select a unique name, etc. BTW, when you select your new name, be sure to let Hawk know so that he can change all your previous posts to your new name I.D.
Regards, Old Man
Gentlemen,
This is not in response to Tunica/Tony, but I could not find better category to voice my concerns, since it does have to do with possible onset, and progression.
I am a 44 year old male who one year ago (Jan. 2007) was diagnosed with Dupuytren's Disease in my left hand. I have palmar bumps and bands, but no contracture, yet. There may be a slight bump beginning in my right hand.
August 2007, I discovered a small bump, smaller that a pea, in the middle of the arch of my left foot. It does not bother me significantly and I have not seen a doctor for it yet but when I do, I believe it will be a diagnosis of Ledderhose Disease, which is a form of Dupuytren's Disease.
Which leads me to your site.... About 2 months ago (early Oct. 2007) I began to notice mild pain in my penis when I had an erection, either when masturbating, or when waking up in the middle of the night with an erection. Occasionally I am aware of this mild pain during the day when I do not have an erection. Sometimes I think it is my urethra that hurts, and other times it hurts just a little bit just under the head on the left side. For the past 2 months I am still able to get a full erection and ejaculation, but I am aware of this mild pain, which has NOT gotten worse. I keep looking for a nodule or a plaque, but I cannot find one, flaccid or hard.
What is the time frame for the onset of this disease? Would I know something more after 2 months that I don't know now if I was developing Peyronie's? Is is possible to have this with no visible plaque, nodule, or curvature after 2 months? Should my mild pain be getting worse by now if it were Peyronie's?
Of course I am worried because of the Dupuytren's, Ledderhose connection - I am hoping that I have not hit the trifecta - I don't want it. Are there stats for men who have all three? Like what % get all three.
Any insights as to my situation are greatly appreciated
Joe44
There are no reliable statistics but it may be significant that the first guy to respond to your post (me) has all 3. It sounds like we're on about the same schedule, but I'm 12 years further down the road.
I've had Dupuytren's surgery in both hands, for multiple contractures; I have a quarter-sized lump under one arch that doesn't bother me; and I have Peyronie's, which began with nocturnal pain and after a few months became a very noticable bend. The course of this disease is enormously variable, and your case may turn out quite different from mine.
If you're googling on "peyronie's" you'll see a lot of diagrams and illustrations showing a large distinct lump of so-called "plaque" on side or top, causing the bend. These illustrations are exaggerated and simplified; I don't have anything like a lump, just a hardened area down one side; more like a Dupuytren's band, actually.
Bottom line - don't panic. It's unpredictable, it may or may not become serious. Better treatments are in the works at at 44 you have time to benefit from them.
Joe, I'd get to a urologist immediately and explain what's going on ... now is the time to take Vitamin E, and possibly Pentox and L-Arginine and maybe some other things ... get on it quickly and maybe you can avoid anything getting worse/hardened/calcified, etc.
Good luck brother,
Nemo
Joe, I first noticed a nodule. The pain followed. Thats just me, though.
I took 800IU of vitamin E a day, for years. Also applied it topically to the lumps in my palms. It did nothing.
is there a difference between Peyronies Disease and ED? please explain...thanks
>>is there a difference between Peyronies Disease and ED? please explain...thanks<<
Um, yes there is a difference.
In ED, your penis cannot get hard or erect.
In Peyronie's Disease, when it does get hard, it has a bend or a kink. Many men with Peyronies disease have some degree of ED.
Are you here because you have either of those problems?
Tim
ED = Erectile Dysfunction
We throw acronyms around pretty freely. ;D
Hello everyone,
Need some advice here from all.
Is Peyronies Disease always associated with pain?
If the syntom of curved penis has occured for about 4-6 months without any associated pain, what does it mean?
Really appreciate all answers...
Peyronie's Disease is NOT always associated with pain, just usually.
If the shape of your penis seems to have become permanently different, then it is probably Peyronie's Disease. We always recommend (and I am about to recommend to you) that anyone suspecting this seek out a good urologist who knows about the disease for a diagnosis. VERY rare other diseases such as cancer can masquerade as Peyronie's, so seeing a professional is absolutely critical to starting the road to healing.
Tim
jacqueslee
I have never had pain with Peronies. I had a 20 degree up curve that corrected in 12-18 months with 400 IU of Vitamin E three times a day and Potaba. That was in 1996. I took Vitamin E for about 11 years until I had to have heart stints and went on Plavix.
Hope you have good result. Watch out for shrinkage and fibrous in the corpora. I wish I had that advice in 1996 and has started with the VED. "Old Man" has a good VED regime.
Good Luck, This forum has a lot of great information.
Jackp
jacqueslee,
I agree with jackp...the only pain I ever had was for about 24 hours right after my injury.
I never had any pain either. It would be interesting to know what the breakdown of symptoms are in percentages.
Initially I had barely noticeable pain but enough to cause me to explore around. I found a pea sized lump, thought it was cancer and trip to the Urologist introduced me to the new term "Peyronies." I had not pain since the first 2 months.
Hello. I'm new to these forums.
I began feeling pain in the shaft of my penis about 5 days ago, after getting a bit carried away with myself. It's a aching, insignificant, barely-noticeable sort of pain, interspersed with occasional "bursts" of pain which are strong enough to make me wince. I also have two faint (but very real) raised "bands" which run half way around the side my penis. After a lot of research, I've come to the conclusion that I am experiencing the early stages of Peyronie's disease.
There's no bend yet, but this morning I was trying to get an erection so that I could examine it - and perhaps take some photos - but I couldn't get an erection. I was watching some of the most explicit porn imaginable, and there was nothing, not even a twitch. I have never, ever, had any problem getting one, so I panicked and called the doctor. When I got there, he asked me to lay down on a table so that he could examine my flaccid, tiny penis. I also showed him some photographs of it, fully erect, from yesterday, and pointed-out the lumps on the side, which are caused by the bands. They are only small, but still definitely there.
He said that my erection difficulties were probably due to worry. Which is quite likely, I suppose, since I am very worried about it.
I had researched all the options, and read most of the studies regarding oral therapies, and decided that my best course of action would be to take all of them - the whole bunch: tamoxifen, ALC, pentox, colchicine, and possibly POTABA if the NHS would pay, and even verapamil gel if it was offered (PDLabs' self-published paper smells like a load of crap to me).
He said, (after seeing my flaccid, tiny penis), that he would have to refer me to a specialist, and couldn't prescribe anything. I gave him some print-outs of the pentox and ALC studies, as well as a review of some other treatments, and explained to him that I didn't mean to be cheeky, but that I have a mostly-biomedical Biology degree (first class, honours) and I can fully understand the studies and the risks, and that he can prescribe the drugs.
Instead, he said he could refer me to either an NHS urologist (after waiting at least a month), a private urologist (paid for by me, even though I have no money), or an STD clinic (even though I don't have an STD, so they'd just refer me to a urologist anyway). I chose the private urologist, at an estimated cost of between £80-130 ($160-260), and have an appointment for tomorrow. However, I am hoping to convince him to let me have the actual treatments on the NHS (since that is what it's for).
I know that I have Peyronies. But without a bent penis, I'm not sure whether I can get the treatments for free, even though it makes sense to treat a potential (almost certain) disease while it can actually be treated very successfully, rather than wait until it becomes much more difficult to treat. And it would actually save the NHS money in the long term.
Has anybody had similar experience with the NHS? What are the chances that the (expensive, private) urologist will just give me some vitamin E and send me home to "wait and see"? Will he even be able to see the raised bands without my having an erection? And what would he make of the bands? Would I be better-off just self medicating? I don't have money to waste on pointless referrals, especially if I'm going to have to pay for my drugs myself.
If this isn't an emergency, I don't know what is. Stupid NHS.
Sorry about the long post.
Also, I wanted to ask some more questions:
How long do you think I have until my penis starts to bend noticeably? Should I post pictures? Or would that be in bad taste?
Even though I could get an erection yesterday, it seemed a bit "sluggish", like blowing up an old balloon, with the top of the shaft being noticeably narrower than the base until it was fully erect. Also, it seemed maybe half an inch shorter. This certainly isn't normal for me, but does it sound like Peyronie's? I can't imagine what else it could be.
Well, you asked how long you have...
Dear Mr. Aptly-Named "Panic":
You may be in the early stages of Peyronie's Disease. It is more likely that your "getting a bit carried away with (your)self" has led to an injury to the penile shaft - either in the tunica or in the soft tissue that lies superficial to that layer (ie the skin). Injuries heal - in Peyronie's Diseae, injuries heal abnormally.
There is NO reason for you to assume that your penis will do anything other than heal normally over time (ie the next week). The likelihood that this will lead to permanent change is small. Given your state of distress, it is extremely unlikely that your erectile difficulties are due to anything other than stress.
Your perseveration in posting style, in desparately trying to get an erection with porn, in your self-description of your "flaccid, tiny penis" - all of these bespeak problems with your emotional state - perhaps due to this event (or perhaps chronic?). Take some time to relax and heal. I recommend warm compresses and ibuprofen at 800 mg per dose three times a day (do not exceed 2400 mg per day) for one week minimum and see what happens. It will probably all work out.
Tim
Fortunately we do not have an NHS to deal with (yet) so I can't help you there.
I do think you picked a very descriptive name since 5 days post rough masturbation is awfully quick to actually have the symptoms of Peyronies Disease. Keep in mind that the nodules or bumps we discuss are Peyronies Disease scar tissue. I personally doubt that you have palpable scar tissue manifest in 5 days post trauma. I would seriously doubt that if you were 60, and I would doubly doubt that if you are under 30. There is also no way Peyronies Disease struk and rendered total ED in 5 days through ANY strictly physiological process. Few men ever experience TOTAL Ed from Peyronie's and I have never heard of such a rapid onset. Psychologically you can turn off an erection in 5 seconds with one shotgun blast or the onset of panic, fear, worry, or stress. adrenalin attaches to the receptors that control vascular dilation and constriction.
So far what we have is a sore, recently abused penis and instant ED from panic.
Your solution of dump[ping the entire kitchen sink or medicine chest down your throat at one time seems a nit of a panic response. It may be advisable to combine a few things that either show promise or at least cause no harm. I would suggest an anti-inflammatory for starters and kinder treatment of a very vulnerable body part. I would also suggest that you actually listen closely to your urologist and not present your self as a frantic man that is too upset to listen to evidence.
Hawk
Ha ha, yes. I tried the name "penis panic", but the word "penis" is reserved, for some reason.
I suppose I should calm down a bit. But, you see, I have been taking anti-androgens for hairloss (finasteride and dutasteride) for a few years now, and after reading this article:
http://asiaandro.com/1008-682X/5/33.htm
and others, and after seeing your thread on prostate problems, I can't help but worry about it.
And it's not only the pain that worries me, but also these weird raised lines. They look like, well... fracture lines. They are certainly real, and new. I have quite a clear photo of them, if you'd care to see...
And the "flaccid, tiny penis" and the "most explicit porn imaginable" bits were just added lighten the mood, really. Although that porn was pretty filthy.
But, yes, thanks - I will go and relax for the rest of the night. Hopefully, I'll have a clearer perspective tomorrow. And if anybody would like to see that photo of my penis, let me know and I'll PM it to you, if I can. I'd genuinely like to hear your thoughts on it.
Parts of anatomy and Peyronies Disease terms are restricted to reduce confusion in posting. Otherwise it would be unclear if people are referring to a term or to a member's name when they post.
Quote from: penisI like to watch porn.
Is this a delusional man (we get a few) hearing voices from his penis or did a member say this? ;)
Someone would pick the name "my penis" and the entire forum dialog would be destroyed. "I am glad 'my penis' is doing much better"
The crap administrators have to worry about ::)
Isn't "member" a euphemism for penis?
Tim
I have about two plaques on each side of my "member" so to speak, and it seems like sometimes - especially when fully erect - they seem really large and pulled against the skin. These are relatively recent, however, within the year - so my question is: Will they smooth out, the way surface scars do with time? I'm hoping Xiaflex not only reduces curve, but nodule size, because it's more the look of them that bothers me rather than the bend itself.
I have lost about 1.75" - 2 " in length and also lost girth (although I have gained some length back). Over the first year, I went through a 10 - 20 degree curve in all direction (first down then straight, then up, then right, then straight) I have no real curve now. When my initial curve started I also developed a dent like a spoon would make pushed into play dough. It was underneath the base left of center. I could palpitate 2 beads of plaque in the dent. They were smaller than the tip of a pencil eraser. They gradually reduced to smaller than a BB.
Now I feel absolutely nothing even when I am in traction. The dent is still there but no matter what level of tissue I palpitate, I feel nothing. It makes one wonder what depresses the tissue in that area.
The other point is that the dent is not noticeable during a low to moderate erection. When I pump up in the VED it is the last stages of a full pump (the kind that actually dimples the head of the penis while under pressure) when the dent becomes very visible.
Hawk:
I too experienced a similar situation where the nodules went away and could not be felt but still have the "dent". However, my uro who is quite experienced in Peyronies Disease and its treatment said that the tunica had what she called an adhesion inside its outer wall. She said that this would cause the tunica to be pulled into the corporal chamber. She further explained that it could be somewhat like adhesions after an operation. Sounds like that could be possible, but we have no actual proof of this.
After several years of daily VED therapy, my dent went away. However, at times the area seems to be softer than the rest of the shaft area before and after VED induced erections. I still use the VED at least three times a week for therapy in addition to using it for erections for sex. Added note for VED users: you must have patience and perserverance in using the VED as results usually come slowly in most cases.
Old Man
Guys, has anyone ever thought they were in an inflamation stage, and turned out not to be? I know I'm grasping for straws here, but I'm trying to cling on to any hope available.
Last weekend, after sex, I noticed a little light tingly sensation on the right side. My girl had been pulling on me a little aggresively getting me erect (it felt good at the time, I assure you, it wasn't ill tempered). For the past 6 days, I've had this very vague sensation near the base on that side that sort of floats, it's almost like a tingly sensation, not really sore per se, it feels almost like a pulled muscle. It doesn't "hurt", it's more of an awareness and if I stretch the penis a bit, that seems to make it more noticeable. I've closely monitored for any hardening or lump, but can't find one. Pressing on the corpora doesn't elicit any tenderness or pain. I have no pain with erection, and have been able to have sex or masturbate every day since (which I realize may be preventing total healing, but I'm constantly checking to see if a bend is develping). It's a hair tender I might say, but not anything like what I'd call "pain." The gentle tingly sensation only increases if I pull on the penis (gently, of course).
I'm hoping and praying it's a combination of pulled skin/ligaments/corpora around the base giving a weird sensation and not the beginning of a full-out peryronie's attack. This was, in fact the area of my penis most distant from the Peyronie's, so it would be the healthiest part. I'm loading up on ACl, E, Advil, L-Arg and going to the Uro Monday for Pentox, hopefully. I'm also using a rice sock for heat, so I guess I'm doing all I can.
But can anyone say they've ever had some soreness or weird sensation that DIDN'T result in a peyronie's attack. If so, I'd just like to hear it as I'm, of course, pretty uptight right now.
Thanks,
Nemo
Nemo,
Give it a rest - to quote you. On the Saturday morning, at 8:44 AM EST, the 26th of January (that would be last weekend), you said you were going to "give it a rest" - that was stated in response to our suggestions that you needed to back away from sexuality to get some perspective (I recall that you were very worried about developing ED).
Today, you way that last weekend your girlfriend "had been pulling on me a little aggressively getting me erect". It would appear that giving it a rest is not something you are really willing to do.
Now you are worried about a tingling sensation.
Do you see a pattern of behavior here that might not be working in your favor?
Tim
Yes, Tim, you are correct, I didn't give it a rest as you suggested, and I intended to do. Honestly, though, and I hope you can relate, it's hard not to let the fear that something is wrong dominate your every waking moment. Hell, if I'm not having sex or getting erect to see if it's changing, I'm feeling my penis every 10 minutes trying to feel a plaque or nail down where the soreness is coming from. The fact that I think I recently discovered a small indentation on that side that I can't determine if it was preexisting or not only adds to the panic. And as far as sex, I actually feel like I need to sleep with my girl every chance I get in case this is the beginning of the end for me (I realize that sounds crazy).
When I first developed Peyronie's in 2001, I felt a small hard spot on either side of my penis - no pain. Within a few days, I was waking up with painful erections and the bend was there. I've read though about guys having a weird sensation for days before an "attack" and that's what's informing my current freak out.
Am I obsessive about this - hell yes, I'll admit that. I realize I sound like a nut, and truly hope and pray I'm just being obsessive. I just never really thought Peyronie's would be back in my life, and after 7 years, I'm panicked that it very well may be coming back with this lingering "strained" feeling. I realize all I can do it take it day by day, but you know how stressful this condition is.
Nemo,
You have pretty well described what you are doing. Now, I repeat my question to you: "Do you see a pattern of behavior here that might not be working in your favor? "
My advice is to try really hard to do something different, and I think it will begin by seeing the doctor but not end there. I recommend - very strongly - that you consider counseling with a person skilled in sexuality.
Tim
ps - getting professional help for my feelings is what I had to do. I have posted before about my dysfunctional response to developing Peyronie's at a young age. I basically became a sex addict. It damaged me spiritually and emotionally and professionally. I am only now recovering from it. You might be able to do better if you pay attention right now to your needs.
Thanks, Tim. No, my mental outlook is not positive or helpful, I agree. And I will consider your suggestion of counseling - I've actually considered it before this Peyronie's scare. If, in fact, this is Peyronie's coming back, I guarantee I'm going to need some therapy ...
Thanks for advice.
Hello, I'm a new reader. I could not find a way to post a new topic, so perhaps I can use this one.
I believe I have developed Peyronies Disease after the use of finasteride when I did not get an erection what se over in over a month and my genitals started to feel weird. My whole story can be found from propeciahelp.com. My dick is also narrower especially on the parts were the nodules are and more wrinkly/rubbery.
I do not have large lumps on my shaft, but if "nodules" like the ones in this picture, I found at least four. One is larger and is bigger on the right side, making my weewee bend to the left. My erections are a joke and I am 99% sure it's physical, as not even Cialis 20mg seems to help one bit. I'm thinking about taking pictures to my uro to confirm it, if I am right. Thank you.
This picture is NSFW (from wikipedia)
http://en.wikipedia.org/wiki/Image:Erectpeyronies1.jpg
Onni,
I saw no nodules in this picture and I am a bit confused on what this picture shows that relates to the conversation ???
Also, if you will read the section entitled "Read This First" it has a lot of important information about the forum, new topics, forum rules etc.
I meant those ringlike things on the guy's shaft.
I will read that. I have not found any clear pictures of these "lumps" or "nodules"
Omi,
That is pretty much what a penis looks like. We all had a penis that looks kinda like that and hope to get back to that state. I think you are looking a veins branching off from the dorsal vein that runs down the top of the penis.
Oh, then why is the picture in wikipedia's Peyronies Disease ???
I just don't know if mine is Peyronies Disease or not, but something is def. going on down there :( Some varicose-veins emerged at the same time and the texture became more rugged and dark..if that helps.
That Wikipedia picture is so dumb I edited the page to state it looks normal.
Tim
All right.
I have had very little luck in finding pictures to show how these things look like. Are there any on this board?
Thanks.
Guys:
This site was posted by me before, but seems to have gotten lost somewhere among all the posts. It has thousands of photos of penises in all sizes, shapes and forms. Some show curves of all kinds, and among them are pictures that surely show Peyronies Disease in it's worst form. The site could be considered porn if one let's their mind wander, but the pictures should be used for educational purposes only. There is a lot of knowledge to be learned from them.
www.ejacu.com/
Old Man
I already mentioned two posts ago how to find many many pictures of Peyronies disease with a search engine like google.
It is not hard. If one wants to find pictures that look just like something that they have that might be Peyronies - that is another matter. Start with a picture of your own and a trip to the doctor. A pic sent to me recently had no discernible lesion on it. It suggests that when we worry, we may not see as well as we should.
Tim
Here is a picture of Peyronies Disease. Hopefully you will not have to look long to notice the difference between this and subtle skin irregularities or a vein. This is not a extraordinarily severe case. There are many men on this forum with worse. This is probably about a 45 degree bend. There are 2 more pictures on the page if you scroll down. The center picture prepared for surgery is probably a 90 degree bend. Click on the picture to enlarge. http://www.peyroniesinformation.com/index.php?action=pictures
Thank you for those links.
While showering, I noticed that the base of the shaft has become much thinner (especially on the right side) and there is a "ring" above that part at which the bend starts. I would estimate it at 20 degrees. Will take pictres and go to my uro again.
Hi Onni,
I think it would be best to get checked out by your urologist of general Dr. It is impossible for any of us to diagnose what you have. It may be nothing or could be a mild case of Peyronies. Either way, getting your Dr. to check you would be the best thing.
Please let us know how things turn out.
Good Luck,
Pal
Tim: The google image search did not give many results. It is still unclear to me how these plaques and nodules look like - a bend is easy to recognize.
Have made an appointment with an uro. Don't know what this is - all I know is that my dick did not look like this 6 months ago.
I think I have had Peyronies for 3 years now and I will post as to how things are going and then a question. Started with pain on getting a erection. Next came the dent / bend to the left. Bend looks similar to a left hand turn road sign. Saw a number of doctors, and was advised to do surgery. Last doctor (noted to be one of the best in the Peyronies field) advised surgery. He also said I maybe developing some plaque on the under side. That I did get the plaque but bend remained about the same. Taking Vit-E, L-Arginine. Just started my VED routine about 2 weeks ago. None of the doctors would give me a Rx so I had to get
VED a different way. The question is have any members developed plaque the second time with out pain or injury?
MUSICMAN:
In my case, I have developed several bouts of Peyronies Disease, some with pain, some without. Other times, I developed it again as a result of a slight injury during sex. There never seems to be any definite way that the mess came and went for me.
It is my firm belief that each and every guy has a different case. So, there seems to be no set pattern for Peyronies Disease. Every person experiences different symptoms and different circumstances every time. There are no two cases exactly like each other - just different each time.
Old Man
Omni,
Many of us have dents instead of bends. In my case, I think that a dent formed because I was working so hard to prevent a contraction that would lead to a bend forming. I now just finished (apparently and hopefully) a time of activity of my Peyronie's Disease, during which two new dents appeared on the left side. Daily use of the narrow cylinder (to maximize longitudinal pull - for that has seemed to be the most useful) seems to have prevented a deformation.
Although I am not going to send a photo, I bet that I and others here have changes to their penis shapes that are similar to yours. You are doing the right thing by going to a doctor - let us know how it goes.
MusicMan - note above... Like Old Man, I have had this a long time and it has come and gone with regularity - though I have to sadly admit it has come more than it has gone - I wish I had Old Man's success in that regard. The VED has helped me, but I have not figured out yet why it keeps getting worse.
Your post raises the issue here that we struggle with in our decision making: if we are still in the active phase, then surgery runs the risk of fixing one problem just as another comes along. That, in turn, would lead to multiple surgeries which carry a combined greater risk of losing erectile function. However, if the bend does not respond to the VED (and I highly recommend looking into a traction device as well), and the bend makes sex impossible, I would go ahead with surgery.
Tim
Tim, did nodules precede your indentions, or did the indentions just appear on their own? And was any pain evident with indentions? I've had Peyronie's for about 6 years, but I'm only just recently noticing some indentions, so I'm still trying to figure them out.
Mine just appeared. No nodules or pain.
Tim
I think that Tim has sort of alluded to some this process before, but just for clarity, let me repeat it and perhaps expand on it.
1) Deformities represent the progression of actual tissue fibrosis which = Peyronies.
2) Nodules represent specific focuses of inflammation that MAY or MAY NOT accompany EITHER the process leading to Peyronies OR Peyronies itself.
3) Pain represents the effect of inflammation that MAY or MAY NOT accompany inflammation associated with the process leading to Peyronies or Peyronies itself.
I have tried to word this VERY carefully. But Tim and others, feel free to pick it apart. I think it is becoming ever more clear that each of us experience Peyronies in a very individualized way. But the underlying processes are common ones even though not all of us experience every aspect of them. And certainly the solution is a common one as well. A successful therapy would attack and neutralize all three of the above phenomena. - George
PS - Hopefully, I have managed to word this in a way that will successfully navigate the fine line between Hawk and Liam ;D.
>>Hopefully, I have managed to word this in a way that will successfully navigate the fine line between Hawk and Liam <<
LOL
I like that definition. It leaves room for other theories, like, say, autoimmune disease and MMR shots as therapy.
Tim
Guys, I'm trying to figure out indentions. The indentions I've had for about a month now are all on the bottom side of the right corpora. They aren't (so far) causing any bending or anything, and other than the weird sensation I've had on that side they're not "painful" per se. There's no "waisting," and from the top side everything appears normal, only when you feel on the bottom right side can you feel these indentions.
As I've mentioned, I haven't been able to feel any sort of nodule, plaque or anything hard or suspicious in the area of these indentions. From what I've been reading, some guys get indentions after a nodule, and some get them for no reason without any nodule. If I could shake the weird sensation/dull sensitivity on that side, I'd breathe a little easier, but as long as the sensation is there, I keep waiting for the shoe to drop.
My question is, has anyone experienced the appearance of indentions, accompanied with mild discomfort, that DIDN'T lead to a bend or something worse? I'm fervently hoping this is going to be a self-limiting process - as it is, the indentions aren't causing a real problem, I just don't have experience with indentions and don't know what else to expect.
Thanks,
Nemo
That has happened to me. But I have used the VED religiously.
Tim
Tim, how would you use the VED during a time when indentions were "new"? Old Man's advice is to not go to a full pump, and I certainly don't want to stress this tissue. What was your routine during a time such as this?
This is ME - OK?
For me, I note that if I do not pump, I get conraction and angulation or a worse dent. If I do pump, I get less angulation and less dent. So I have found what works best for me. If I was more reactive and in pain, I would go with less pressure and take advil, and hit my supplements .
Tim
OK thanks.
What about this strategy? What if I took a continued "wait and see" approach, and if I start getting a bend, then VED to a fuller pump. In the mean time, I'm pumping about half full two or three times before I shower at night, just to get some blood flowing in. I don't get many (if any nocturnal erections) and am laying off sex for a while, so I figure the VED will at least keep the blood flowing.
Does that sound prudent to you?
Nemo:
I would suggest that you try doing more than 2 or 3 cyles that you stated in your post below. The protocol for the old Soma Correct calls for 10 cycles of pump up, hold and release starting from the beginning of the schedule.
You can adjust your cycles to suit your individual needs. In my case, I exercised with pump up, hold and release for about 15 minutes each session after I got my penis used to the added pressure of pumping. This schedule was maintained on a daily basis for 6 months and then I reduced the sesstions to about 3 or 4 per week and still do that schedule today.
You need to keep as much blood flowing in and out of the corporal chambers as possible to help stretch the plaque or nodules in the shaft.
Old Man
Nemo,
I have developed several indentions on both lateral sides of my penis, some of them are quiet deep, mostly on the left side. But no bend at all. Only hardened, narrowed and shrinked penis. :o :'( ;)
R3
Ralf, did you have any discomfort when the indentions showed up? And if so, how long did it last?
I guess I'm trying to determine if maybe the indentions I have are the product (end result) of the current inflamation, not just a step toward something worse, since I've had them for about a month and still no sign of plaque, nodule or bend. At least that's what I'm hoping. Knowing some of you guys get dents that don't automatically mean a bend is coming does make me feel a little better at least.
Well, I remember I felt random, short and sharp pain, but wasnt able to localize it where exactly. It went through the whole penis. It lasted some months, maybe 3 or 4.
Thanks, Ralf. Anyone else care to chime in with tales of the appearance of indentions that didn't lead to anything worse? (Always looking for some hope in this mess!)
Nemo,
I want to encourage you but I think one must examine facts. Dents are plaque. There is no predicting whether a plaque that causes a dent or a plaque that causes a curve will grow or not. They are the same thing. The dent vs a curve is simply the size and location. Predicting when the progression of a specific plaque will stop or when other plaques will stop cropping up is impossible. All we can do is to do the best we can to minimize the process and hope for the best.
It is very possible these plaques will not progress but it is very possible they will. I don't think a survey of what plaque did on someone else's penis is going to give you a lot of info on what these plaque will do on your penis. I am not suggesting that you should not seek support or chat about this. YOU SHOULD. That is why we are here.
You must find peace however, in spite of the fact that no one can tell you what your plaque will do. No one can suggest that plaque that causes dents never progresses to cause bigger dents, more dents, curves, or penile shortening.
Yeah, you're right, Hawk. I've just never had dents before and am in "panic mode." However, I didn't realize dents are plaques - in my case, they must be very small, as I simply can't feel them, or they're deep in the corpora or something and can't be felt. They're not obstructing erection at this point, so that's good. I guess the best I can hope for is that they stay like they are and don't get bigger or deeper. They're about a month old now with no change I can detect.
If the dull, slight soreness that seems to float around the right side would go away, I'd relax a bit, but as long as it hangs on, it's got me freaked out.
You're right though, every case is different - point taken.
Thanks,
Nemo
Nemo,,,,i too had to dents appear in the last few months,,,didn't have any pain with them,,it just scared me and my doc said it was plaques....Nothing has changed,,it has just stayed the same since they appeard a few months ago....So my advise is to just relax....Mine just came on un-ecpectedly...
Kimo
Sorry to belabor this subject, but has anyone ever damaged nerve endings in the penis?
Reason I ask, of course, is I'm trying to find some other explanation for what I'm feeling other than Peyronie's (wishful thinking, maybe). The sensation I get is always in the right corpora, but it migrates from base to mid-shaft to distal end beneath the glans, and sometimes it even feels like the sensation extends down into the right testcle. It's never "pain" per se, but more an awareness or almost a kind of warm feeling. I know it sounds strange, but sometimes, it almost feels good, like a warm nerve sensation. If I try to press around where it is, it never hurts, and the sensation is only really present when flacid - when I'm erect, there's no sensation, but the occasional tweak from manual stimulation. When erect, my overall sensation is that it's a little sensitive and I have to be careful with it. As I've said, I do have a couple small indentions on the bottom side, but I can't swear they've not been there for who knows how long and I only found them on close inspection. They don't hurt or anything when pressed but I do sense that if I'm using a firm grip, there's a little mild tenderness in that general area.
I read somewhere that damaged nerves in the penis can take months to recover, so that's why I'm hoping that the month I've been experiencing this might be explained on a nerve level rather than a Peyronie's inflamation.
Anyone experience anything like this? I realize I may be grasping for straws, but with no bend or palpable nodule, etc., I'm guess I'm still hoping against hope it's not Peyronies Disease.
Nemo
For sake of interest if a person had some improvement in angle of bend, dents or other. If the plaque is removed, stretched or altered in some way even if you end up with a straight penis am I right that you would still be able to feel some lumps, scar tissue, plaque? In other words going back to normal will not really ever happen.
Two years ago, in the midst of a bout of prostatitis, I detected a BB-sized lump in my penis. Dr. thought the potential might be there for Peyronie's and ordered a sonograph. The results were negative for plaque, and the Dr. wanted to take a wait-and-see attitude. Thanks to google, I was able to search out and aggressively push for immediate therapy just in case, and started right off on Vitamin E and heat to the penis through hot sitz baths (which also helped with the prostatitis).
As the prostatitis resolved (primarily through prostate massage) in six months, symptoms of Peyronies Disease came to the fore, with a noticeable bend in the penis, increased sensitivity and pain during sex, sensitivity and pain during the day, etc. after a year. I introduced new therapies (enzyme, MSM) and discovered that my symptoms were exacerbated by clothes that pinched my penis, with consequent changes in wardrobe and the way I sit. Pain has gradually subsided, and bend is very slight now.
What has not happened is the formation of a plaque. In the first year I did check for lumps and plaque. The original lump seemed to have disappeared, or become so diffuse that I couldn't really detect it anymore, and I was unable to find a plaque scar. I had a sonograph approximately 6 months ago, and despite the rise and decline of Peyronies Disease symptoms, I remain plaqueless. There is a slight deformation/dent in the side of my penis, and the area where I found the original lump is extremely sensitive. Indeed, just probing for a plaque can set off pain that lasts for weeks.
Pressing the penis can also cause recurrence of Peyronies Disease symptoms--at least the pain. I was at the gym a couple of days ago and in rolling out my quads, I slipped and rolled up on the foam roller over my crotch. Besides the testicular discomfort, I'm now experiencing just a touch of the old Peyronies Disease symptoms again.
From reading this website, I understand that there are two phases in the Peyronies Disease process, acute and chronic. It's hard for me to figure out however if I'm still in the acute phase or not, whether I'm simply extending the acute phase by aggressively pursuing treatment, or whether I'm passing through the acute phase without actually forming a calcified plaque. I've also read on other Peyronies Disease sites that the 18-month period for the acute phase is extremely variable, and that some Peyronies Disease sufferers can go in and out of periods of Peyronies Disease symptoms for many, many years. All of which is to say that I really don't know what the current status of my Peyronies Disease is.
Has anyone had a thrombosed vein as part of (or unrelated to) their Peyronies Disease?
I have developed what I believe to be a thrombosed vein on the left side of the penis. While I've had a vague, migrating, mild soreness sensation on the right side of the penis for about a month, I have also developed the vein issue on the left side. From everything I've read, it sounds like a thrombosed vein.
I first noticed it right after sex - whenever I'd pull the foreskin back, I'd have what felt like a nerve twinge on the left side of the glans. Upon checking this out, I noticed that it was right on top of where a deep vein goes under the glans. I can feel a slight cord like raised area right over that vein (can't see the vein, but I can feel my pulse when I press the ridge - so clearly there's a vein there). If I press it, it is mildly sensitive and definitely seems to be what's triggering the nerve twinge in the glans. I can also track that vein all the way back down the shaft to the base and for most of its length it feels slightly stiff or cord like.
I'm trying to get into my Uro to get his opinion, but I've got to say, I'm hoping that if this is a thrombosed vein, then maybe it's indicative of a vein issue that's been causing the lingering sensation in the penis (even on the right side) for these past weeks. I still can't detect any plaque and have no bend, just mild, migrating soreness.
Anyone dealt with a vein issue like this?
Nemo
Nemo - no idea.
I sometimes wonder if you have things on your penis simply because you are always prodding it, poking it and palpating it. If it is a thrombosed vein, it too is something that might benefit from a bit of rest. Are you doing any better on that front?
Tim
Yes, Tim, I am. My girl and I had a great trip to Washington DC a couple weeks ago and had a very romantic time. When we got back, we agreed to not have "penetrative" sex again until I can shake this weird sensation, as if it is indeed Peyronie's inflamation, we don't want to risk making it worse. She's totally supportive in this regard.
I'm starting to wonder if I have some sort of inflamation or infection that may not be Peyronies Disease. While the penis does have low grade "aches and pains," when I'm walking around, the sensation can also sometimes be felt down in the testicle. I've had Epididimitis before, but it's not anywhere near that kind of pain. I also had a prostate infection back in December that though I thought it seemed to be going away, I wonder if it could be responsible for some sort of inflamation causing these symptoms. My Uro offered antibiotics for the prostate infection at the time, but suggested they probably wouldn't do any good (I've had prostate infections before and they didn't) so I never took them. I wonder if antibiotics now might be called for to cover all the bases.
As it is, I'm hitting the supplements religiously and hoping for the best. Unfortunately, I can't see the Uro again until the first week in April. I'd love to think this will be resolved by then, but 5 weeks into it already, I'm not counting on it.
Nemo, I really think that if I were in your shoes right now, I would talk to my doctor about trying a course of antibiotics. Infections can be funny things and if you are having some symptoms suggesting that you might have an infection, you should be getting urine tests and getting on antibiotics if anything suggests an infection. There are typical prostate infections and some that are not very typical. I have experienced both kinds, and both kinds DO respond to antibiotics. Just my advice. :) - George
Nemo,
A common antibiotic for prostate infection is ciprofloxacin (Cipro). Cipro is a fluoroquinolones. This class of antibiotic is known to have anti-fibrotic activity
Quote from: Hawk on December 01, 2005, 01:51:27 PMSystemic administration of fluoroquinolones permits a less invasive means for treating a patient susceptible to scar tissue formation or related pathologies.
I am not suggesting that cipro will cure Peyronies Disease or that you are likely to take it long enough to have a major impact. I am suggesting that it may help you in more ways than one especially if you are having a flare up. One of the uncommon side effects from long term Cipro use can be tendon injury. This, along with studies on scar tissue, suggests to me that it may impact the type of collagen that is less elastic and that is associated with Peyronies Disease.
Hawk and George, that kind of information is EXACTLY why I participate in this board.
I will follow up with my Uro on the Cipro.
Thanks,
Nemo
Nemo,
Just remember that the main reason to take the Cipro is for an infection. The other may be a possible secondary benefit. If you go in asking for Cipro to fight scar tissue, your MD is more likely to dismiss you as a flake than he is to spend time checking out the premise and discussing the issue. with you.
Hawk
Understood Hawk. I had to talk him into the Pentox, so I'm definitely trying to avoid him thinking I'm treating myself just using him as a script writer, but I think I can mention it in diplomatic terms. He may want to prescribe Levaquin (which is what he prescribed for the prostate infenction in the first place.) Frankly, if he's willing to prescribe any antibiotic, I'll give it a try - but I'll definitely mention Cipro might be a good fit for Peyronie's, as well. Thanks.
Nemo
Actually Levaquin is also a is a fluoroquinolone but has not been researched as much as Cipro and one or two others. They have been used for capsulaitis (frozen shoulder) and keloids although I am not sure about the details of the studies.
You might click on the quote in the prior post to read about them and try a google search on cipro fibrosis or cipro fibroblast.
No doubt Tim is aware of some studies with cipro and cystic fibrosis although I think cipro use has been restricted in kids for some reason.
I've gone from a BB sized plaque to a flat rounded piece that is 3/4 inch wide to 1 and 1/4 inch long. I used Verapamil for 1 year (a waste and discontinued), VED for the past 14 months and Traction for the past 2 months. I would say the plaque has grown very slowly for the past 2 years, 6 months since I was told I had Peyronies. Today I am unsure that the growth has stopped.
I have lost more than 1 and 1/4 inch on penis length. My question to the group is, for those of you that have had improvement in the plaque, what did notice first - a reduction in size, a softening of the plaque, and what do you attribute to the change?
I've only been on this forum since November 2007 and although I've spent hours reading through forum content I'm sure there is still much out there that I could learn. As I mention in the post below, I would like to know if all plaque is the same or if some of us develop worse plaque than others.
On one extreme, it seems that some develop considerable pain early in the peyronies development and plaque grows rapidly and often in multiple locations. Possibly I've misunderstood, but it seems that those that grow plaque quickly seem to find improvement or healing (loss of symptoms) quickly.
On the other extreme are those like myself where an injury develops into a very small lump, minimal or no pain is felt but the plaque continues to grow very slowly over multiple years. After 2 1/2 years of this I keep hoping I've reached the end of the growth phase and can then hope for some improvement. I am anxious to know what that improvement might look like.
I've read inconsistent reports from many on this forum on the value of plaque injections. Some argue they work and others have suggested the injections simply created more plaque locations. Since I'm in the beginning stage of Traction, I'm thinking I should be doing more to help soften the plaque. I believe I've read here that Dr Levine recommends injections with those using Traction.
I'm confident that the VED and Traction that I'm using are helping my penis in many ways (strengthening, lengthening, reducing the bend) but thus far I only see a worsening on my lone plaque location. I'm thinking of scheduling a telephone call with Dr Levine. I believe some has received value from the call. Possibly I would include my Uro on the call here in the Los Angeles area. He doesn't seem very knowledgeable on the latest.
Ptolemy:
To give you a short answer about whether or not Peyronies Disease affects everyone the same way -- No, each and every case of Peyronies Disease is totally different from each other. There may be some similar effects, but they are never the same.
It is just like fingerprints, no two are alike. Each case to be treated as one only.
Old Man
Ptolemy,
As Old Man said, we don't have the answer you or that we want to hear. Peyronies Disease is not alone in being an unpredictable disease. Those of us that have faced prostate cancer want answers. Is it likely that it metathesized to a distant site. Is surgery, radiation, or hormone treatment the best? What about a combination? What are the side effects? Are the side effects worse with one treatment or the other? Will it kill me in spite of treatment and associated side effects? Will it kill me if I do watchful waiting instead of treatment? (one may live 2 years, another 20 years.)
I can fire off 40 more such questions without pausing to take a breath. Like many diseases Peyronies Disease varies widely. Your story is simply that, "your story". We know some things work sometimes. We know some things that never do harm and that may work sometimes. We know of spontaneous improvement (seldom if ever total reversal). We know men that we can give no likely reason for: their development of Peyronies Disease, their continued progression of Peyronies Disease, their improvement of Peyronies Disease, the reason they only ever got a slight case of Peyronies Disease, or why it progressed with a rapid vengeance.
I personally think that conservative steady use of traction and/or the VED is the best current hope for treatment. I think the PAV cocktail may enhance the traction/VED approach (of vise versa). I think it is hard to argue against things as generally healthy as a mixed form of Vitamin E, NAC, ALC. A healthy life style and glucose control could only enhance our lives. On the other hand, I think Verapamil injection is a gamble, BUT, how a regimen such as the one I suggest will effect a specific case of Peyronies Disease is beyond any mortals' ability to say. How a case of Peyronies Disease will progress without treatment is beyond anyone's ability to say.
The problem is not that you did not have a good question. The problem is that no one has good answers.
Ptolemy, Hawk has provided you with an excellent answer. He has hit virtually all the bases. I would only add, that I think it is much easier to stop the progression than it is to achieve a reversal. In fact, I believe, based on what I believe I know, that it is nearly impossible to achieve a significant reversal in a desirable time frame. The sooner one recognizes that, the sooner one can begin to take meaningful steps to at least halt the progression. This disease takes tenacity and diligence. Hawk has pointed to the most likely tools to get there. Now it is up to you to begin to apply what you have learned here. All the best to you! - George
Hello guys
For the last 4-5 months I have felt a small bump in my penis, approximately in the middle of the shaft. I can only feel it when I have an erection. I was worried it could be cancer or something, so I saw an urologist a few days ago. He did a quick examination, said he could find the bump without an erection, said I had very, very mild Peyronies, probably caused by vigorous intercourse, and sent me out of there - the entire 200$ consultation took less than 5 minutes!
Needless to say, I am left with a few questions. Reading up on Peyronies now, I see there are many issues regarding progression etc. In my case, it has not caused me any sexual problems or pain or anything like that, and there is only a very slight curvature to the left, that I'm pretty sure I've always had anyway.
I can not clearly gather from the last two days of internet reading exactly what I can expect now. Does this fibrous tissue somehow grow and cause more serious problems later on ? Or is it as likely to stay the way it is now ? What exactly determines what happens ? Should I start taking vitamin E or do anything else ? Hope to hear a reply from this community soon, thank you very much!
After reading what Hawk had to say as to where a persons Peyronies Disease
will progress without treatmen ( or with treatment?) is hard to say. If you
think of what George999 says about it is easier to stop / slow down?, the
progression of the disease than have a reversal, that's all and fine - but!
I knew what I had within a few days that the pain started. I was at the
urologist within 10 days. True they did not have much to offer but I did as
I was told. I saw two other doc's ( one to be the best in my area ) Three
years later the degree of my bend prevents love making with my wife of
35 years.
And as to the point - what good is to stop or slow down the
progression for one case like mine? There is no real hope of a complete
reversal. ( If I had a 20 deg. bend I would consider myself cured. ) As not to give up hope I do use some supplements and VED therapy. I have been advised that surgery is my only real option. If I had the finances to
have the surgery ( by the best I could find ) that's is what I would do.
I do not have the grace to have $5.00 co-payment insurance. Surgery does not seem to be a good topic on this forum but for me what do I really have to lose. As I sit at my keyboard I am waiting for the silver bullet.
Musicman
Harryh
The doctor did not tell you anything about a treatment. The least you need to to is take Vitamin E 400 IU three times a day.
Watch for fibrosis, this will cause shrinkage. Next trip to the doctor get a prescription for a VED and use OLD MANS three cylinder routine for 26 weeks.
Wish I had know about the VED and what kind of shrinkage Peronies can cause 12 years ago. I lost 1.25 inches. With the VED and the help of OLD MAN I have gained back almost 1/2 inch.
Good Luck! There is a ton of information on this board and it will take a little time to go through all of it.
Anytime any of us can be helpful, or you just want to vent let us know.
Jackp
Hi HarryH
Welcome to the boards. I think a good approach is to read through the "Newly Diagnosed Highlights" posts to see summations of what some of think and have learned. One thing we learned is that we could not make (though I wish we could) a "Do this stuff and you will get better" post. God I wish we could do that!
But I do believe that if you take some time to learn, you will figure out in short order (like, say, a week) what is what, and what makes the most sense to try to do. Hang in there.
Tim
Hey,
I was wondering, can trauma induced Peyronies Disease get worse even after going through the healing process? Is the penis more vulnerable to new injuries during non acrobatic sex and masturbation then it was before?
Well, I think that's exactly what happened to me. I injured myself during sex back in 2001, then stabilized for the next 7 years. A couple months ago, I think I injured myself again during sex and am dealing with inflammation and a couple indentions (which I've never had before). So, in my case, yes, I think you can reinjure yourself.
The deal with Peyronie's is that, for whatever reason, your body doesn't heal scar tissue in a normal way - it overcompensates. If you were succeptable to this once, you're probably always succeptable.
Nemo
Was your second accident something that you noticed during the sex, or was it some sort of micro tear that came out of nowhere that you assume happened from that sex?
Yes, I was having sex and wasn't fully erect ... had a "buckling" for an instant and felt pain for a split second. A couple weeks later noticed an indentation.
Nemo
Well say your having sex with no painful injury, could you be microscopicly re-tearing your tunica and not even know it? The same way people who get it without trauma get peyronies?
That's an interesting, good question, but as most docs say, you shouldn't refrain from sex, just be very careful and don't put the penis under any mechanical stress. The erections are good, just don't bend them.
Nemo
when I saw my uro in sydney he said that the Peyronies Disease lasts 12-18months and then you have an op and you are off on your merry way - how come there are guys on here saying that they have had this aweful disease for 4 ,5 even 10 years - I thought once the disease settles down ; it does not progress any further...
p.s - nemo - just bought some mangosteen concentrate juice - very tasty!!
Iceman:
Not trying to throw cold water on your theory of getting rid of Peyronies Disease in a year or getting an op. It just doesn't work that way. I have had Peyronies Disease since the age of 24 when a sexual encounter went bad and I broke my penis.
Many and varied treatments have gone under the bridge since then as I am now 78 plus years old. I still have a small indentation where my major plaque was located on the left side of my shaft. Don't think that the residual scars/plaque ever go away entirely, but I have no real bad symptoms like I once had. Peyronies Disease can come and go, so be careful in making choices for your therapy/treatment.
So, bottom line is this, each and every case of Peyronies Disease it totally different from any other. You must strive to get some treatment/help that works for you. I am totally surprised that the doctor in PA told his patient that the VED would only cause more trauma. He has a lot to learn about Peyronies Disease.
So, keep the faith, search for a treatment that works you and don't give up trying.
Old Man
I agree with Old Man. It is just a fact that there is NO cure for Peyronies Disease a not even any consistent, effective treatments. There are things that help reduce or stop progression and may even result in some reversal.
Surgery has serious drawbacks and is there for seldom even considered an option if intercourse is possible without surgery. Depending on the type of surgery and the success, a patient can end up with loss of length, ED, lack of sensation.
Men often have flair-ups of Peyronies Disease for decades.
Iceman
Developed Peronies 12 years ago. Upward curve about 3/4 inch behind the head. Not bad enough to stop sex but was noticeable. To tell the truth my wife noticed it before I did while on vacation.
Shortly after that I had a prostate infection and went to see a Uro. After the prostate exam I asked about the bend. He examined it and put me on Vitamin E 400 IU three times a day and Potaba. That was the treatment at the time.
After about 12-18 months the curve went away and I thought I was through with Peronies. Was I wrong. Lost about 1.25" in length and ED set in. Uro said that surgery would not help and put me on Viagra when it came out in 98.
Unknown to me it attacked my Corpora's and caused scaring that was made worse by injections for ED.
Was set up to have an Implant in 10/06 when I had chest pains and had to have stents put in my heart. Had to wait a year. At that time I was 100% impotent and asked the doctor what to do. He prescribed a VED that I had fit in his office.
I started out with the VED for sex and pumping and holding for 15 minutes a day. About 2 months I had a abrasion on my penis just behind the head and had to quit the VED. The abrasion was from wrong use of the VED.
10/07 Failed implant surgery because of the scar tissue in the corpora's. I have to wait until late summer to try the implant again.
10/07 I found this Board. Did a lot of research. Found OLD MAN. He told me how to use the VED. Now I can have Sex with the VED and exercises it every day using the method OLD MAN sent me. Uro said to keep the VED up that it would help the next try at an implant.
So in my case even though the curve went away Peronies continues to cause damage.
MY $0.02
Jackp
thx guys - thats a really heavy reality check - so what is the effectiveness of trental then - how will it aid me in this??? - Im starting to get a bit confused here - PLEASE HELP!!
Iceman, I know you're scared right now. Try the SEARCH feature. Just put in "Pentox" and you'll bring up numerous posts discussing it. Pentox is a sort of blood thinner that is supposed to inhibit the scarring process.
Nemo
Iceman,
Have you invested time in reading the "Just diagnosed" child board on our forum?
It is a read only board (not for posting) that Angus puts a huge amount of work into. I encourage you to take advantage of it. He did it on his own time for men like yourself.
ok ok - will do..
hawk, where is this area - Have you invested time in reading the "Just diagnosed" child board on our forum?
cant find it...
Quote from: Iceman on March 14, 2008, 12:05:50 AM
hawk, where is this area - Have you invested time in reading the "Just diagnosed" child board on our forum?
cant find it...
https://www.peyroniesforum.net/index.php/board,18.0.html
I have top admit after reading this page for w while I am scared witless. I am 35 and have had peyronies for almost 8 years now. it has never been on 1 side. I have never had a curvature. What i have are what my urologist called plaques that are all around the shaft of the penis. The opening has become so small around the shaft that the actual head of the penis is hidden inside the shaft. Erection is not a problem, but the opening is 2 tight to create any function at all. while stimulation is possible a normal sex life is not. i know have scarring on the shaft of the penis which I'm sure will cause other problems.
Why am I telling you all this, well my urologist started with vit e and it did not work, but i was told it sometimes naturally goes away. well not only did not it seems to have gotten progressively worse, and the urol wants to perform new circumcision, but wants me to loose weightfirst. This sounds fishy to me but i dint know where to go, and well after reading this i don't know what I'm going to do.
any suggestions?
I can't tell if you have Peyronie's Disease or a diffuse scarring process at the head of your penis like phimosis or something like that. I'd start wit a second opinion from a different urologist. If it seems to be a diffuse fibrotic problem, I would check you testosterone levels and think hard about starting Pentox.
Tim
Is it common to lose sensation at the site of the plaque? Mine is fairly far away from the head of my penis, but where the scar tissue is I've noticed a numbness - I can imagine it's the distance between the skin and the nerve endings at this point, but I was wondering if it was a common sensation.
ocelot556:
I experienced some of the same numbness at the plaque/indentation site when my Peyronies Disease was so bad. My uro said that it was caused by the nerve sensation being blocked by the damaged tissue. Whether or not this is your case, have no clue.
There may be others who can share their experience with this problem.
Old Man
When I started with my Peyronies I had the pain & hourglass on the left side about 1\2 the way up the shaft, When I went to the Euro he said he could not feel any plaque. Got the bend and then the plaque started to develop. Odd
that the main plaque is on the RIGHT side and also the bottom but I bend
80 - 90 deg to the LEFT. Is this common?????? If I develop much more
plaque I think I will have a permanate erection. Is my situation about right
or more than normal. Using supplements and VED ( I think I do have some
improvement with this. After 3 years I don't see why I seem to have more
plaque developing on the underside. I can get nocturnal erections but
things don't work during the day unless I use Viraga,andthen what can you
do with a horse shoe????? I do understand that the VED and such take a
long time but what about this large amount of plaque??? Input????????
Musicman
i
Hi everyone,
I'm glad I found this forum. I was diagnosed with Peyronies Disease 8 years ago at the age of 29. I developed a plaque on the left side causing an initial bend to the left, but not severe. After the initial bend, I have pretty much returned to a relatively straight erection, but with a slight twist of the shaft to the head. It is odd, but I normally experience hardly any pain during an erection/sex. However, in a normal flaccid state I do at times have a dull ache in the scar tissue or even a slight burning sensation that at times extends into the testical below the plaque. So, to make a long story short, I have a couple of questions that I was hoping some of you could answer:
1) Does it make any sense to have varying discomfort while not erect?
2) Also, I've always read that Peyronies Disease is a progressive disease. However, since the initial onset 8 years ago, I have experienced no progression. Is it true that with Peyronies Disease that I should expect it to progress as I get older or is it possible that it may not?
Anyway, thanks for all your help and I look forward to hearing any helpful input you may have.
Sincerely,
Ned
Ned
My first sign of Peronies was almost 15 years ago. Plaque on the top just behind the head, curve up about 20 degrees. Went to the Uro for a prostate infection and he said I also had Peronies.
He put me on Vitamin E and Potaba. About 18 months later the curve was gone but had lost size.
No it not uncommon for the curve to get better for some of us. I have not had a relapse of Peronies and plaque. Have had Loss of size, Low Testesterone, ED, Venous Leakage and corporal fibrosis I believe as a side effect of Peronies.
I did not have pain but was taking 800 mg of ibuprofen for arthritis and that may have helped.
Hope this helps.
Jackp
Hi Ned,
Interesting questions - odd that they did not prompt any answers here!
Many of us have degrees of discomfort when erect or flaccid - so you are not odd at all in that sense. Your second question is impossible to answer, or perhaps to answer it in the way we would like - with certainty. IT is possible that it can get worse later in life, and it is possible that it may never change again. For most of us who got it early in life and are now older, it has flared now and then along the way. For me, it has gradually worsened, for Old Man it has waxed and waned and is now as good as it has ever been (I think) and for others it has not changed much at all.
Tim
okay i'm a new member and heres my story... i'm 25years old i developed guillian barre syndrome GBS in 2005 i was treated while i was travelling in australia and made a full recovery by september 2005..
Then whille making my way home with my ex girlfriend in febuary 2006 i noticed a slight bend in my penis to the left side.. this worsened over the next few months and i went to one doctor he said it was normal then it got worse i went to another uro and he diagnosed me with Peyronies Disease about a year and a half ago..
i have no pain but at first it just bent to the left and now its bending towards me from jst under the head!!
MY penis has gone very narrow just under the head always flops to the left and is like a banana when erect to the left with the head curved towards me..
The uro said 5 months ago it wasn't bad enough for surgery try vitamin e and thats all yo can do really..!!
i am currently taking herbs i got off a doctor on those Dr china shops but i cant see it fixing it...!
what do i do at this stage..? will i ever get back to normal..? is surgery a big risk..? is GBS related..?
Hey PJChap
Welcome. Sorry you're a member of the club... :'(
I'd go to work with the VED. I had no clue when I developed Peyronie's a bit younger than you did - what I instinctively did was to get hard as often as possible and to "use it or lose it". I really do think that helped a bit - in that it stretched it out nice and hard often.
Now I would recommend using the VED to get it hard and straight (when you get an erection, there is no "correcting force" applied to the penis that might make it straighten out, like there is in the VED. It is no cure-all, but it might slow things down and leave you in a better place.
Although you might be a surgical candidate, you had best be aware that you are going to get one, maybe two, shots at surgery, so make it one of the best surgeons i the country if you chose that route. Also, you can always opt for that later.
Hang in there. This is a tough problem emotionally. I am glad we are here to help you.
Tim
YIKES
SO THIS IS WHAT I HAVE????
i have watched my penis going continually to the L
I am taking Propecia
any comments
This is scary
Gwar
Do some men fully recover.? and some men say oh they have Peyronies Disease but don't have a bend.. like what is Peyronies Disease without the bend?
my understanding is plaque formes in the shaft of the penis restricting blood flow and pinching nerves causing bending and less rigidness.. am i right? if so if i just get the plaque taking out will my penis pop back straight and blood flow normal again...? why does that seem obvious and simple to me
pjchap:
No, Peyronies Disease does not go away as simply as you stated in your post below. As far as I know, Peyronies Disease never goes away in its entirety. I have had it for over 50 years now and there are still some small symptoms left in my shaft: a slight indentation where the major plaque was located and some slight plaque on the top portion of the penile septum area.
You should take an aggressive approach to some form of therapy as soon as possible. Would suggest that you see a qualified Peyronies Disease urologist to determine if you actually have Peyronies Disease and then start out on some form of therapy quickly.
Peyronies Disease is a rather devastating disorder in men and will affect each person differently. At best, it is a very hard matter to deal with, but one must accept the fact they have it and take quick action. Prolonging some form of therapy will only add to the agony of the matter.
We are all here to help, so feel free to ask any and all questions.
Old Man
Dear Gwar,
From what I have read here and on Propecia boards, it may play a direct role in your having developed Peyronie's Disease. It does not seem to be a prominently advertised feature of this medication!
I'd stop it. I'd rather be bald and able to have sex, than with a full head of hair and a dick that didn't work.
You have a LOT to learn about this disorder. I'd start by spending some serious time reading the "Child Boards" here for a lot of "catching up with what folks here have to say" time, and I would schedule an appointment with a urologist ASAP.
Blocking testosterone effects can have a devastating effect on penile anatomy - I would stop the Propecia right now.
Tim
thanks old man! i'm from ireland and i have already seen Dr ted mcdermot in dublin .. but i havent been back to him since febuary he didnt really leave me with much advice... like if i could just get equal pressure on both sides and plaque removed i'd say i'd be fine..!
i went to a chinese medecin doctor and i've started taking what he gave me , its called SHENGJINGGUBBEN WAN {dont ask!!} anyways its for blood flow etc.. so hopefully it has some effect..!! or am i wasting my time..?
what about homeopathy..? oh yea one other thing do testicals suffer at all from this ..? i don't know if i'm being paranoid but my right testical is uncomfortably higher than the left...?
pjchap:
Remember that we on this forum are not doctors, just ordinary folks with a problem of your penises called Peyronies Disease. As you may or may not know it was identified as a disease/disorder way back in the 1700s. And, to date there appears to be no definitive treatment/cure for it. Each person has a different set of symptoms that present themselves. So, each person must find something that works for his particular case of Peyronies Disease.
Said all of that to say that you must take whatever action you deem necessary to find the right therapy that might work for you. This will include trying different methods and approaches to the problem. This forum has many topics/threads that cover a wide spectrum of things that guys have tried. Some find success with their approach and others do not and have to move on to other therapies.
So, bottom line, since you have seen a uro already and may or may not have gotten the answer you were looking for, maybe you should try to locate another uro that has some background treating Peyronies Disease. Ask the question up front when you get an appointment if the doctor has experience treating the disease. If he does not, then move on to another one. There may be a shortage of uros in your part of world and this could be a difficulty for you.
Search through all the topics you can on the main forum to see you can find something that will lead you in the right direction for you. In my case, the VED helped solve my Peyronies Disease symptoms and this was after many years of trying wide and varied therapies/treatments. My history is posted elsewhere on the main forum along with many others. Take a look at these also.
As for whether or not Peyronies Disease can affect the hang of your testicles, I have no clue. However, I have found that just about every person that I have worked with in the Peyronies Disease and prostate cancer world has a different hang, etc. So, one being held higher than the other should not be caused from Peyronies Disease, but, who knows!
Hope the above helps some way. Let us know if you have further questions that we can help get you answers.
Old Man
pj, Old Man has made some really good comments regarding your question. I would just add, that no matter what part of the world you are from, doctors can be really helpful even if they don't always seem to be. Sometimes you just have to do some foot work and learn all you can on your own and thoughtfully and respectfully bring some of what you learn to the attention of the doctor. And sometimes you also just have to ask the doctor the right questions, like "Doctor, do you know of another doctor in our area who might know more about my problem? Or even perhaps another doctor who might know of a doctor who would be better able to help me?" All it takes is the right information or the right question to open doors. Also, take the time to carefully review as much of the information on this forum as possible. Especially note the names of key doctors in this part of the world who are experts on Peyronies. Unfortunately, most of the research in Europe regarding Peyronies seems to be coming out of southern Europe in places like Italy and Spain. But the more you learn and the more questions you ask, the further you will get in dealing with Peyronies. - George
I just descovered last night the symptoms of this disease. I had noticed pain but was shocked when I saw an obvious bend. Looked it up on the internet and discovered what I now believe is Peyronie's Disease. Should I stop having sex and/or jacking off for awhile??? Been reading posts and will look for a good Dr, I live in Cleveland Ohio. Any advice is apreciated!
My understanding is that sex does not worsen the disease. In fact, I would think that having erections would help to strecth the plaque if at all possible. If it isn't too painful, then I would think by all means you should try to stay sexually active. The disease will play on you mentally enough. Trying to maintain life as usual is best. You will find a LOT of information on this site. Several types of oral med and therapy suggestions here.
Are you able to estimate the amount of curvature in degrees?
QuoteMy understanding is that sex does not worsen the disease. In fact, I would think that having erections would help to strecth the plaque if at all possible. If it isn't too painful, then I would think by all means you should try to stay sexually active. The disease will play on you mentally enough. Trying to maintain life as usual is best. You will find a LOT of information on this site. Several types of oral med and therapy suggestions here.
Are you able to estimate the amount of curvature in degrees?
Thanks for your thoughts, I apreciate it. I always had a VERY straight erection and now it takes a slightly sharper curve toward the middle. i never heard of this disease but am starting to think i have had it for some time but only recently realized a big difference. i guess the middle curve is at least 20 most 30 degrees.
Dear Thunder,
At this point, there is no consensus on what to do in terms of sex. You are probably in an "active" phase of Peyronie's and therefore might cause more injury without taking care. That might mean gentle handling, but it should probably include getting an erection to maintain "stretch" of the penis. Stretching things out is good it appears (i.e. long periods of time without erection can be associated with development of Peyronie's).
So getting hard is probably good, but hard wanking might not be so good. :-\
I am confused by the second post - you said you had a "very straight" erection, but that the curve is "slightly sharper" and that the curve may have been there for "some time". So, I am confused - but are you saying that the erection has gone from very straight to slightly curved to (now) more curved? If so, that would suggest that this is not so new.
Tim
pjchap,
You have made a duplicate post, which is a no-no here.
In general, when no one responds to what we said, it has simply failed to hit the "response" nerve properly and will probably not do it if it is merely posted again.
With that in mind, here is why I did not respond to it the first time you posted.
1) the diagnosis is not in doubt - you have Peyronie's and have been to a doctor so my first line of advice (go to a doctor) is not needed.
2) "what do i do at this stage..?" Start the VED and see a doc who is willing to start you on therapy that might help, including nitric oxide (NO) donors/NO enhancing drugs like Viagra (no, it is NOT for getting erections, it is to enhance NO production)
3) "will i ever get back to normal..?" I don't know - no one knows. That is a question that does not require an answer because no answer will be "right".
4) "is surgery a big risk..?" Generally speaking it is more risky than not having surgery. As has been discussed here before (this is why reading the boards and catching up has it's advantages) surgery is appropriate for a discreet lesion without change for more than one year - at least. Otherwise avoid it (and even then it is risky).
5) "is GBS related..?" Again we would be speculating. Seems it could be - but more than that, how could anyone answer that question?
So, I see a bunch of questions that are either impossible to answer, or ones with pretty obvious (at least to me) answers with multiple previous posts answering them for others. In either event, I bet that is why no one went to town discussing them.
However, none of this I have written is going to make this easier for you. Believe me, the guys here understand how frightening and awful this process is to go through. People are interested in helping each other (I am sitting here at 9:30 at night typing away to you, after all).
So here is my advice:
Read the Child Boards and get "caught up" on what folks here have said and think. "Lurk" a bit and listen to the advice you get and that is given to others. I think it can help you to get through this scary and lonely time.
Tim
I welcome you to the forum. As Tim pointed out, the rules under "Read this First" do not allow duplicate posts. In addition "our histories" topic is not for back and forth dialog so it is not a good place to ask questions. That topic is the one structured topic on the forum. Due to that I deleted the duplicate post there. I do encourage you to post a history there following the recommended format.
Welcome again. I hope you find some answers and support here.
Hawk
I am sure that some were in the forum is the answer to this question
but here it is. How does a person know if the plaque is turned calcified
or not? Musicman
Musicman:
It is my understanding that calcified plaque presents itself as a very hard irregular shaped plaque formation. It is usually very hard and does not feel pliable like some of the early plaque formations in the penile shaft.
Others may have a better description of it, possibly George999 or Dr. Tim.
Old man
Hi all new to this site...well new to register and post. I have been reading through all of this and have to say I am scared of what I have been reading, but glad that you are all here and helping others get through this. I have only had this for maybe a couple of months and I guess that is what has me so concerned. How fast is this supposed to occur? I am 47 and we (wife) and I first noticed that my semen was kind of lumpy and thick, then a few days later I started having painful erections like the skin was being pulled down or stretching tight is the best way to describe it. A week to ten days later is when we saw the bend and felt the mass in my shaft. Mine is right behind the head and feels like it is 1/4 inch wide by about 1/2 inch long and the bend to my member is 45 degrees up, :'( right behind the head. I know from reading the child forum that everybody is different but is it "normal" for this to progress this fast. No rough sex, the only blow I can remember is my 4yo kicking me in the groin while I was relaxing on the couch. I have not seen a Uro yet, kinda embarrassed and afraid that he's gonna tell me the vitamin E thing and wait.
Outashape,
Being embarrassed and waiting to visit a uro is the worst possible thing you can do, and even when you visit one it's not certain that he or she will know anything about the disease other than what it is, and that people take Vitamin E for it (and I'm not kidding about that). The good doctors will tell you that they don't know much about it, and you can wow them with the knowledge that you gain here. I talked to a uro I visited recently and got a three-moth supply of Pentox for it.
In short, the best thing you can do is become proactive at the beginning of the disease, and you could be one of the 3% who gets well. I wish I was in that category, but I'm not.
Dear OUtaShape
Changes in semen are not part of Peyronie's. Go to a urologist NOW and get checked out. IT seems that you might have had an inflammatory or infectious disease that caused a change in your semen (ie prostatitis) and that should be treated too. If it is a trigger for Peyonrie's disease then you will not know unless you look for it. Time to do a semen analysis and urine test for evidence of GU tract infection and getting started on diagnosis of Peyronie's if you have it.
Why wait?
Tim
Quote from: outashape on July 11, 2008, 12:06:20 AMI am 47 and we (wife) and I first noticed that my semen was kind of lumpy and thick
Tim is right on this. In all likely hood this is nothing. Semen can change its consistency all the time. I have observed all kinds of weird things. BUT, at your age it could easily be a prostate infection. These are quite common in men in their 30's and 40's and they are nothing to fool around with. Go get checked as soon as possible.
Quote from: outashape on July 11, 2008, 12:06:20 AM, then a few days later I started having painful erections like the skin was being pulled down or stretching tight is the best way to describe it. A week to ten days later is when we saw the bend and felt the mass in my shaft. Mine is right behind the head and feels like it is 1/4 inch wide by about 1/2 inch long and the bend to my member is 45 degrees up, :'( right behind the head. I know from reading the child forum that everybody is different but is it "normal" for this to progress this fast. No rough sex, the only blow I can remember is my 4yo kicking me in the groin while I was relaxing on the couch. I have not seen a Uro yet, kinda embarrassed and afraid that he's gonna tell me the vitamin E thing and wait.
Again, get it checked out. The classic interpretation is that "plaques cause bends". The reality, I believe is far more complex than that. I believe that inflammation can cause lumps that may go away or may progress to plaques and then may progress from there to calcifications (which are the most difficult to deal with). The beginning point is usually simple inflammation which is the easiest to deal with. DON"T WAIT TO FIND OUT! START DEALING WITH IT NOW! And I believe that even inflammation can cause bends if it is severe enough and focused enough. Don't diss Vitamin E either. A good quality Vitamin E with at least 300mg of Gamma Tocopherol can be helpful to many people. So can things like Acetyl L Carnitine and Mangosteen Pericarp Extract. You need to do something to can the inflammation as quickly as possible though to lessen the likelyhood of the inflammation progressing to full blown Peyronies. - George
Thanks guys for the response!! I am looking for a Uro now, I was in panic mode and I guess I wasn't thinking right. My wife was saying the same things as you all but being a man I was just gonna self diagnose with the help of my computer...you know I can fix anything ::). I live in the Ann Arbor, Michigan area anybody know of a good Uro around here. I don't have a regular Doc I can ask, and I haven't been to a Doc in 15 years. I do have the U of M close. I will get "him" checked out and I will post the results here so others that my be in my shoes can maybe benefit from it. Keeping the fingers crossed and hoping for a breakthrough for this disorder. I had never heard of it before this happened to me. After MANY hours spent on the computer searching and reading all I could find I have learned a lot. I read a study out of Europe that concluded that this may be as high as 15% of the population but because of shame fewer than 3% seek help. Thanks again for this website I have looked at MANY and this one seems to be run and populated by compassionate guys looking to help. Many that I visited were just trying to sell me "Their" cocktail of vitamins as a cure. Well ...I'm off to see the wizard....
Outashape,
Not just any urologist will do. I think you will find 3 different categories of urologists. I'm not knocking any of them but you need to understand the following:
1. Many urologists are general. They may have heard of Peyronies during their studies. But probably treat more general male urological disorders. This may be true of many uros who have their own practice.
2. Group practices. Look for Urology groups. Often within the group each urologist may specialize more in a specific area like prostate disorders, cancer, urinary tract, etc. There may be one in the group who is more familiar with Peyronies than the others.
3. Specialists. You want to find someone who truly is up to date, has experience with, and knows how to treat Peyronies disease. This is what we are all looking for and they are few and far between. I know of one in Chicago, but not in your area. Maybe someone else here in the forum may know. There is also a web site you might try www.peyroniesassociation.org as they list a a "Find a doctor" feature.
There is much information on this site regarding different types of therapies, and everyone's case is different and therefore not all treatment regimens work for all people as well. But approaching this with knowledge is far better than walking down a blind path.
how can i measure degree of bent down? and from what degree a surgery is needed?
and can a traction device and/or pump help me instead of a surgery?
thanks!
just wondering details on how this progresses, I noticed the dent and curvature 10 days ago, it apears to maybe forming another dent, I don't know if I'm just paranoid or if it is really happening.
How long does it take to fully develop to the degree of curvature it will ultimately reach and is there a chance more curves will develop, thanks all.
B
beginer,
It sounds like you have Peyronie's from what you write. To be sure (for some folks self-diagnose and get it wrong), it is time to find a urologist willing to help you and willing to treat you aggressively.
Read the "Child Boards" and you will find a lot of helpful information. Hang in there - you will see that a lot of potential help is there - for most of us we have faced several defining issues:
Have you been seen by a good urologist? "Good" is subjective, but many of us need to search to find one willing to provide us supportive help.
It would probably be of value to start with a VED every day to stretch out the tissue that is contracting and forming a dent. Just like a car, dents can be hard to "pull" out. In a sense, a hard erection can "push out the dent" by the blood pushing against the resistent tissue. However, if that was enough to fix Peyronie's Disease, anyone who was able to get hard erections would never have a problem, and we know that is not true.
I think that for most of us, the "pulling" of the VED on the tissue that is dented helps pull it out better than an erection-filled chamber pushes it out. Hope that makes sense...
Some data (and comments in articles) suggest that pentoxifylline ("Pentox", or brand name Trental) might be of greatest value during an active phase, or for those who have long term active disease. Therefore it might be good to speak of this now - right now - with an urologist to get him helping you sooner than later. If you find someone unwilling to even consider Pentox (not ever), then get another doctor.
Welcome! Read up here and I hope this post helps.
Tim
Hey Tim thanks a lot for the information, is it common to continue to worsen from this stage and the curve to increase or more to form?
As for the urologist I am an independent contractor and have no insurance I don't know why, so I was planning on getting some in two months after I return from an expensive work trip, plus from what I have read they don't know much more then most people here and most of the information is taken from here and then only approved by them so it seems like a waste of time and money, but I guess I need to get a prescription for the drug you mentioned or maybe order from a canadian pharmacy. So I will look into all the above.
I really appreciate your help, this is acceptable if it did not get much worse but this is really depressing, I hope I can treat and limit the severity.
Thanks
B
Having read reports of cancer masquerading as Peyronie's, I think an examination is always worth it. You might want to weigh the relative costs of being wrong with the monetary damages of a $3-400 visit paid out of pocket. You are right though - a lot of guys come away from those visits unsatisfied.
As for the other questions - I cannot predict what is going to happen.
Tim
ok thanks I will go ahead and go for it, I guess its not worth the risk. I don't know where the child boards are though I would like to see what your talking about for more information.
Thanks for your help on this matter, this really sucks.
B
Is there any truth that some cases actually go away naturally, have u personally heard of this happening?
nevermind about the child boards I found it.
This talk of cancer really scares me. My urologist barely looked at me. I guess if it was in fact cancer I'd be having other symptoms like weight loss, etc.
Hornman, Where do you live in a general sense? - George
I'm about 20 miles north of Philadelphia, Pa. If anyone knows of a good Uro w/Peyronies experience in my area please let me know.
Here's a question to anyone... what does it mean if the pain begins to get stronger and stronger? I felt this thread about Peyronie's disease progression would be the best place to post this. I saw some internet sites that said the progression of the disease involved inflammation, then scarring, then pain followed by increased curvature. As I tried in vain to be put on something that would help me I watched as my condition slowly worsened. I was told by two urologists that I was perfecty fine and that it was all in my head! EVEN when I told them that when erect I saw a pronounced scar on the middle of the top of my penis that went from the base nearly to the top. I was told that was perfectly normal and I needed to stop looking at myself as I would drive myself crazy. Gah I wish I had a voice recorder for this crap. The other urologist even told me that I was imagining things when I told him that it felt like my penis laid on my left leg now when flacid and was curved to the left when erect. He said that is not something that happens. I hate stupid doctors. I am thinking of writing to the board of urology on these two morons.
But I digress...
I now notice an hourglass looking shape every now and then while flacid when taking a piss. I have the obvious scar when I have an erection and I also curve to the left. I am really worried about the ED as well. I can look at something when I am by myself or think only of my girlfriend and I feel everything getting hot. I feel great, I feel like things are going well, and then I reach my hand down. My penis has not even begun to be erect. I can feel blood trying to go there but it is not working at all. This is very upsetting.
The main point of this though is the semblance of the increasing pain. Does that mean that my scar is starting to harden and will soon begin to contract as mentioned by some of the websites I have gone to? I am really worried about waking up one morning soon and seeing an even bigger problem than I have now. For me, the curvature is horrible enough. But coupled with the pain, the complete ED, and the fear of more curvature is a living nightmare.
Any thoughts?
alcohen, I had immense pain initially from the tip of my penis all the way back to my bladder. And, at the time, my urologist told me he could find nothing wrong. That was as far as it went because, at the time, I didn't know anything about Peyronies. I also had pretty total ED during the several months the pain lasted. It was only months later, when the pain eased, the ED let up, and the scar appeared that my urologist identified the problem as being Peyronies. So I don't see your situation as being too atypical. The pain IS indescribable. No doubt about that. But I think you ARE ahead of the game by having the Pentox. HOPEFULLY, that will prevent future damage. In the mean time, just try to do everything possible to suppress the inflammation. I would suggest stuff, but I know you already have accumulated enough suggestions. - George
Quote from: Joshua on August 17, 2005, 08:05:23 PM
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.
???
Racecar, are you confused? I am unsure what your emoticon means.
Tim
I think we have a new member that quoted the first post in this topic in an attempt to post.
I will pm him with this link https://www.peyroniesforum.net/index.php/topic,316.0.html.
Hawk
I think perhaps Racecar's intention is to RE-ASK that same question. And, of course, there really is no answer, because each case progresses somewhat uniquely since the progress of Peyronie's is very much tied to surrounding environmental factors (certainly in my opinion!). Our goal, of course, is to modify those environmental factors as much as we can to guide our Peyronie's in the direction of healing rather than in the direction of intensifying. Hopefully, Racecar will find his tongue and begin to dialog with us so that we can be more supportive and helpful. Welcome Racecar! We are listening. Speak! - George
Hey guys, very glad to have found this forum. Perhaps you could offer some advice? If i've posted in the wrong spot, I apologise, I did quite a bit of reading on the forum but wasn't too sure where to post... anyway...
About 8-10 weeks ago I badly injured my penis during intercourse. There was a loud pop and immediate swelling. I slept for a few hours with difficultly and in the morning applied ice. Made a doctor's appointment etc. When I went to the doctor she wasn't much help but ordered an ultrasound, which I attended. The ultrasound revealed a large-ish hematoma in the shaft of the penis but no rumpture of the corpos cavernosum etc. (no penis fracture). I asked them about what to do and the radiologist said that my body would reabsorb the blood eventually. Stupidly, I thought the problem would resolve so I had no follow-up appointments...
Now, after all the bruising and pain has dissipated, there is a hard lump as described in diagnoses of 'Peyronie's disease', the same size as the hematoma that appears to be staying relatively stable in size. My 'functionality' is only about 65-75%. The penis goes erect, but not rigid, and feels very unstable where the lump is located. There is perhaps a slight leftward curvature, but nothing of note, and no pain. Overall, this is very worrying. It sounds to me like the onset of Peyronie's disease. I definately kick myself for not acting faster and going back to the doctor.
I will be making an doctor's appointment next week but the time it will take to see a specialist may be valubale time I can use for treatment. Is there anything I can do on my own that might reduce the build up of plaque and help prevent worsening the problem.
Thanks in advance,
nab
Hi nab,
It is quite possible that you will heal without doing anything special at all. To reduce the odds of a bad outcome, and to promote what you are looking for, it might be worth trying the following:
1) Broad spectrum vitamin E, and consider D3, and a time release vitamin C
Stop smoking if you do and sleep well and eat well and drink lots of fluids.
2) Strongly consider using the VED to promote complete filling of the penis with blood to a good tight erection tightness, and use this daily to enhance erectile function, to promote flow of good oxygenating blood to the tissues, and to stretch to induce healing.
3) Speak to a urologist and get going on Pentox if at all possible. There is theoretical data to support the notion that this may be precisely the time to start it (not in ten years).
4) Consider a daily dose of an NSAID to reduce inflammation. If possible, try one of the ones like Piroxicam.
5) Avoid rough sex for a while (seems like a no-brainer, but many guys do this to prove they are OK and make things worse).
Good luck!
Tim
Nab,
The only thing I would add is a couple things that couldn't hurt and may help. Acetyl L-Carnitine Supplement available on line at places like Puritan.com or at any health Food Store. Possibly L-Arginine. If you cannot get exactly the NSAID Tim recommended, get what you can.
Ginko may help until you can get your hands on Pentox (Trental) (Pentoxifylline) which requires a prescription and a knowledgeable urologist or a doctor willing to listen to research ideas.
Something that could help at this stage and could also hurt if you go overboard is hyperthermia. If you limit it to soaks in hot water at a temperature you can stand to sit in you will be fine. If you apply heat or soak just to the penis (such as infrared heat or hot water in a glass) be careful not to apply too high of a heat or for too long. You can over-do heat.
Searching on these items with the forum search feature will supply you with a ton of information. Also reading in the Child Board (sub-board) you can read forum highlights. It is not a place to post but is designed to bring you up to speed quickly. https://www.peyroniesforum.net/index.php/board,18.0.html
Nab,
Get to a specialist! You obvisouly injured your penis and need to get this properly diagnosed. Too many are assuming any injury or trauma is automatically self diagnosed as Peyronies Disease. Load pops, rips, tears and penis don't go together in my book. The recommended meds won't hurt, and may help in reducing inflammation and scarring. But I would get checked out and not take any chances.
Thank you, I really appreciate the feedback. I started on Vitamin-e (iu500) and ginko cause this was all I could find on the weekend. I also started using a cream called Lasonil which is a bruise treatment cream containing heparinoid. I did this to see if it may indeed still be a very bad hematoma, and it seems to have had a positive effect on the size and density of the lump. A bath in epsom salts (for a sore back, lol!) seemed to be beneficial too. But there is still a very sizeable lump. I will look for Acetyl-L-carnitine and an NSAID as well. But definately lwillisjr is right I need to see a specialist and get a proper diagnoses. I have a doctor's appointment tomorrow and I'll take my ultrasound along, I'm sure I'll just be referred to a specialist.
I definately made some mistakes early on by rubbing the area to 'break-up' the lump, and also by having sex too soon afterward. This seemed to worsen the problem, or prolong it. But I have found this injury to be quite psychologically challenging at times and thse activities were certainly a response to that.
Thanks again for your help I'll let you know how it goes.
nab
Have many people experienced a numbing of the penis because of Peyronies Disease? It seems like the tough plaques that run up the length on both sides of my penis feel as if they're in between me and the nerve endings - all sensation on them feels 'dull'. The head of my penis, also, although not having any scar tissue accumulated, seems in the past few days to be less sensitive. This is causing me some mild ED issues, the first of my Peyronies Disease experience.
Is this common? Are there steps some of you have taken that was successful in restoring sensation?
ocelot556:
Loss of nerve sensation with Peyronies Disease does occur. It does not affect all, but does in some cases. I had some of this with one of my bouts with Peyronies Disease and the doc said that what caused it was the nerves being sort of pinched by the plaque and nodule build up on the penile shaft.
He said there was really nothing that could be done about it. He suggested that I continue with my VED therapy and that possibly the nerves would be relieved when the plaque and nodules were reduced, etc.
As we all know, Peyronies Disease is very devastating in its effect on our psyche and there seems to be nothing we can do about it. Maybe someone else has had this effect and relate if they had any success in treating it.
Old Man
Sadly, I am experiencing this and it definitely feels exactly how you are describing it Ocelot. I feel like the nerve endings are being blocked. There is a complete lack of pleasure of any kind when being touched on my penis in the places where it used to really feel great which has definitely contributed to my ED and deep depression. Things feel very numb. My penis fills some of the way with blood but certainly nowhere near enough for penetration of any kind. Things just feel odd and rough when my penis is being handled, even very very gently which is the only thing I allow at all. My girlfriend offered to try her mouth the other night and I had to look down just to make sure that it was making contact with my penis in any way. I did not feel anything. I just politely asked her to stop and slinked away depressed. This condition is unbelievably horrible. I have to wait until December 29th to go back to Dr. Carson to have the Doppler ultrasound done and it feels like forever until then. I then remember that even then I will obviously not be fixed at my appointment, it is simply to check to make sure that I have Peyronie's, which unfortunately it is obvious to me that I do have. I am very disappointed that my life has taken this turn. I am in the middle of my toughest semester yet in college and find myself really bogged down with everything...
Anyone else had the numbness in regards to Peyronie's and find a way to combat it? The joy and release in my life has been stripped away. Not only do I hurt all of the time but I also have nonstop wet dreams because it has always been the case in my life that if I did not have an orgasm for 3 or 4 days in a row I would have a wet dream. I was taking a nap on a couch in the library at school between classes the other day and had one. UNBELIEVABLY embarrasing. Luckily I had enough time to make it home in between classes. And there is nothing I can do because it hurts too much to touch some parts of my penis and the other parts are too numb to feel any sensation. So I simply wait for the next wet dream and try not to fall asleep at school anymore. What a miserable situation.
Nobody even believes me when I try to explain things about this to them. They just assume that I am exaggerating as they cannot even believe being in my shoes as they think it is simply not possible. Unfortunately, I am not only not exaggerating but I am also hiding some of my pain and experiences as well. There is nothing quite like waking up to a neverending nightmare. My girlfriend is the sweetest and most beautiful girl I have ever met and people get upset with me because they can't understand why I am not happy. I just purchased my first house. I got a kitten. I am doing great in school. But I am in constant pain and hobble most of the time when I walk. My penis always feels like it is on fire. And there is no possible way that I can have sex. I can't even get off via masterbation either from myself or from my girlfriend. Oral sex is pointless as I cannot even feel anything...
Sheesh. Ridiculous.
I've posted here a few times previously, and unfortunately for me i'm finding myself in a position best described as "in limbo". In my teenage years (8 years ago) I developed a curve , I suspect due to trauma. Over the years, my best guess would be that the condition (later diagnosed as peyronies) got worse.. the curve at worst was maybe 35 degrees to the left.
Then I found this forum. I started using the VED and though I didn't notice immediate results over the period of a few months there was a definite improvement. I would say that the curve reduced to around 25- 30 degrees. Not groundbreaking but an improvement, a step forward.
The problem occured when I introduced a traction device. I think that I somewhat overextended, thinking that I could enhance improvements. At the time there were no warning signs but later that day my penis seems to shink and I felt pain. I then struggled to gain an erection for a couple of days and was very concerned. A string of sorts appear to develop and a very small mass (a couple of days after the incident). I can confirm that the string and mass are contained within the skin of the penis and not actually attached to the shaft. I have no opinion of whether that is good or bad, but the information may help you to form an opinion of my current condition.
Anyhow a pain continued for a month or so... it lessened over time but seemed to become somewhat inflammed whenever I engaged in sexual activity. I'm now 5 months on and there is STILL an occasional vague pain. This has worried me greatly and makes me worry about what next step I should take, or more importantly what the end game is going to be here.
So anyway, back to NOW. On the plus side:
- Research into peyronies seems to be coming along at an encouraging rate (finally)
- The curve right now is still at the slightly improved state than years ago (30 degrees-ish)
- I'm taking vit e, pentox, ACL, viagra etc so am at least being proactive (i'm not going to reintroduce VED etc at this stage unless the curve worstens. I am fearful of aggrevating the condition)
On the negative side:
- There is still occasional pain which suggests inflammation, which worries me greatly. It all seems so "textbook".
- There is a string under the skin and a small mass (again not attached to the penis, but under the skin. It isn't changing, worstening, painful or visible in of itself, but it is there)
So thats where I am. The situation could be worse I suppose, but as i'm sure you can understand it is far from ideal. In a way I feel like i'm cursed. I managed to improve my situation slightly only or it to "potentially" get worse. It's as if i've taken one step forward and two steps back. Not ideal.
I'm excited that a few of you seem to be on the brink of entering into clinical trials because it potentially throws a lifeline to all of us in the long run. I will continue with pentox, viagra and so on, knowing that I am doing the best that I possibly can at this moment in time. I'm playing the waiting game. This is just an update really, because I'm aware that nobody has a magical remedy. It's all about time... and i'm hoping that time is on my side.
I missed the part where you went to the doctor to have this new development examined...
Tim
Tim - Well noticed. I had enough trouble getting hold of pentox previously and after a few negative experiences I basically decided to go my own way. Urologists in the UK, in my experience seem even less knowledgable or willing to help than abroad. That's my experience of it anyway. Of course, I could book an appointment further afield, but what would that actually achieve at this point? There is surely no treatment that could help me that I don't already know about, and there is nothing that anyone could tell me that hasn't run through my mind already. What benefit would it serve?
edit: I think i sound overly negative here.. what i'm trying it get at is that i'm in a very delicate mindset due to this, and i don't want to make that worse. If I honestly thought that returning to see a urologist over this recent issue would result in me receveiving one single treatment which is useful or that I am not currently taking, then I would do so.
Fair enough - it is frustrating. However, you have to consider the possibility that they might pick up something important, and treatable.
Tim
Tim - You make a good point. I think in a sense I am just scared of hearing more bad news. I will stick to my regime of pentox and various vitamins etc and carefully monitor any changes as well as drug development progress.
EDIT: When looking through the site I noticed that a great many people have passed through the peyronies forum over the years. Inevitably they drift off for a number of reasons. Maybe because they have given up with their fight against peyronies, maybe because they experienced a level of success. Do you think it'd be a good idea to send out a follow-up email to all members of the site in order to try to reach out to some of these people? It could provide potentially useful insights.
Could one of you long timers explain "bouts" of this disease. Can I expect it to disappear and then return at some time? Or will it stay the way it is only to have a "bout" making it a little worse. I know eveyone is different, but in a general sense what can one expect? I myself thought I was coming to the end of the painful stage but alas the pain is back full force. :-\
hornman:
In my case, when I say bouts of Peyronies Disease I mean the recurrence of the original onset. In other words, mine first developed at the age of 24. After much anguish, blood, sweat and tears got it into somewhat of a remission stage. At that point most of the symptoms were gone except the hourglass "ring" about the middle of the shaft.
After several years went by, the mess returned with plaque, nodules and the hourglass ring spread wider and curves developed again. They reached abut 45 degrees downward and the right at the same time. Many therapies were tried and finally got the stuff back under control again so to speak.
Later, in 1995, when I had a radical retropubic prostatectomy and I was idle as far as sexual activity was concerned, it came back with more difficult symptoms. At the same time due to non nerve sparing surgery, I was rendered totally impotent and not able to get erections naturally. The various erectile pills, penile injections and later the urethral MUSE were tried. None worked and the VED was introduced into the "healing" regimen. After about 6 months of VED usage, the Peyronies Disease went away again.
As a result of all the above "bouts" I am at present free on symptoms except maybe a very slight hourglass indentation about the middle of the left side of my shaft.
Bottom line, bouts simply means the return of earlier cases of Peyronies Disease. Some men have a return of them, some do not, but for the most part once you have had it, there seems to be no absolute "cure" for this mess. Keeping one's penis healthy with good blood flow seems to be the key to the answer. Hopefully, the above helps answer your questions, but remember as you said, each and every case is totally different from another.
Old Man
I am, unfortunately, having a "bout" right now. Like others, I am trying to figure out what triggered it (I have some theories, but am quite uncertain so will not share them now). What I know is this: all day yesterday I had an aching feeling in my penis accompanied by a "shrinking" sensation associated with contraction of the smooth muscles that get us (literally) "uptight and outta sight".
I know from experience that when I look like I just got out of freezing water, and have that aching feeling, that something new will pop up. Sure enough, last night, erections caused some pain near the head, more on the left (where I have been more "active" lately. As is usually the case (but not always) visible change is not immediately apparent, but often within a few days I will have a new dent.
I plan to gently use the VED, take 400 IU of E twice daily, add advil 6-800 2-3 times a day, and use some iontophoresis of verapamil ( I still have some around) and to stop drinking one cup of coffee a day (I let the habit creep back), and see what will happen. For other health reasons I have sort of avoided Pentox, but I think it is time to get on it.
Tim
Tim, man, I'm sorry to hear that. I hope this turns out to surprise you by not developing like you expect. I'll be sending some positive vibes your way, partner.
I'm having a new bout as well, Tim. Some plaques which had looked to have been halted have started gaining "mass" (or at least are more visible nodules under the surface) and I'm having some mild ed - pain, a slight dulling of sensation in the penis, and difficulty maintaining erections. This might be due to exhaustion, as I've been working 12 hour shifts and spent the weekend away on a hectic trip.
I've got a very libidinous new girlfriend, which is always fun, but sucks when my sexual performance has to have a huge dropoff because of the flame-up. Haven't had to use viagra in a month or two, but will have to go back and take things slow.
I was wondering if anyone, like me, seems to experience pain/inflammation in association with pressure changes? It seems like whenever I wake up sore or feeling "swollen" or inflamed beneath the skin I can look outside and see a storm coming or already upon us.
Wow Ocelot - what an interesting connection to make. I have not even thought about it.
I am taking Cialis at about 5-10 mg daily, rather than Viagra before sex. It works better for erectile quality, nocturnal erections and makes the side effects much less. I bought it from a online source in liquid form that is almost certainly a copyright infringement, though it was marketed for "research purposes only".
Tim
As someone who's had his share of ligament pulls and tendon sprains (I never broke a bone in my life, all my young damage was to soft tissue) I can attest to the fact that the old adage "I can feel a storm coming in my bones" is truth -- the barometer drops, and every place I've ever hurt, well, hurts. My penis the most - but it also has the most and most recent inflammation.
It feels like every one of my inflammatory episodes happens when it's raining, or about to. I figure there might be some connection to the scar tissue and the pressure change, it contracts to increased pressure perhaps, but I'm not scientifically minded like others here. I only report what I can observe. If anyone else notices this phenomenon, please let me know.
Can anyone answer this - Ive had Peyronies Disease now for 8 months and it seems that the pain is now reducing or at least is not as frequent - does this mean that now I am entering onto the stable phase where calcification will take place and then ED - what happens now and is there a way to avoid this calcification - or is this inevitable and its a slow decline into oblivion....Im a little confused -
I am on:
Pentox x 3 x 400mg
ALC x 3 x 500mg
L-Arginine x 3 x 1000mg per day
L-Carnosine x 3 x 500mg per day
Tribulus x 3 1000mg
ViT e x 1000iu
Fish oil
And lastly VED daily
Iceman,
Your question confuses me a bit. You have been reading here a while, so you should now know that many different outcomes occur. Some (like me) have mini-flareups over many years time. OTOH, I do not know if I have had calcification (I think maybe a little bit) but still get workable and fun erections (made more workable and fun with PDE5 inhibitors) after 30 years of having Peyronie's. So I do not know why you pose this question.
If you are saying that you are worried about that happening, well I hear that!
But you are doing about everything that one can do and you are getting fewer symptoms and it sounds like you are getting, dare I say it, better!
Hang in there man. It is not all gloom and doom.
Tim
thx tim - its just that last night I had a really bad dream about Peyronies Disease and dreamt that my dick was curved about 90 degrees and very very bent - I woke up all flustered and freaking out!! -
Ice, I really agree with Tim on this point. There is, as I'm sure you are aware, a documented case of a guy who lost a calcification while on Pentox. You are on Pentox. If Pentox caused a calcification to disappear, don't you think it would probably help prevent them from forming? I think you are in GOOD shape. I would add some Vitamin D though since its cheap and fairly easy to get anywhere in the world and the research is compelling in my opinion. - George
GEORGE999 - I bought VIT D3 on your advice 2 weeks ago and have been taking it since - i forgot to add that to my list..
TIM468 - thx for your words - i know ive been a member here for a long time its just that my imagination can sometimes get the better of me and Im trying to keep this psycologically positive and have a good frame of mind - youre words and those on the forum here help me maintain a balance and peace of mind - without this forum I promise you I would be going absolutely and completely mental - god help those poor blokes pre internet days...
Hello guys. I posted a few weeks ago about an injury I received during intercourse after which there was swelling, a slight curve to the left (10-15 degrees at the most) and a large hematoma that formed and has been with me now for 10 weeks post-injury. The hematoma is quite large, 2x2 cm perhaps, with fluctuations.
I went to the specialist today, he seemed reasonable and knowledgable, and said that I had fractured my penis and that this tear in the corpus cavernosum had simply not shown up on the ultrasound. Instead of immediate operation to repair the tear (because it had not shown up on the u/s) I left it because i had been told my body would 'reabsorb' the blood. But there has not been much action on that front. The specialist said the tear had healed over and left scar tissue on the left corpus cav. causing the bend to the left during erection. The few weeks after the injury I had intercourse a few times even though things were very unstable and only 65% functional, then finally appreciating the severity of the injury I left it well alone. I wish I hadn't but hey...
Not sure of the functionality atm, haven't tried for a while. I occasionally feel a bit of action down there but don't follow it through. The hematoma is slightly tender when pressed hard, and above the lump, below the head of the penis there is some mild pain when blood is flowing. The doc said basically there was nothing I could do but wait, and that things would never be the same as they once were, that there will be curvature due to scar tissue and a reduction in blood circulation, and that the hematoma may never go away but possibly reduce in size. I just turned 27 so that's a difficult prognosis to take in. But I get the feeling it is correct, I just don't know to what extent. In hindsight I wonder if I should have asked about pentox?
The question I have is, how would you approach this, knowing what you all do about injuries to this sensitive organ? Has anyone had anything similar to this occur? Are there any treatments that might help reduce the lump/hematoma as I get the feeling this is really messing with the overall stability of erections and certainly with the blood flow. Especially above the lump things feel unstable. I really would like to lessen this big lump in the middle of my penis. Also, I am wondering what is the difference between this scar tissue and peyronie's disease, as the doc did not believe that a diagnosis of peyronie's was appropriate for my case.
Basically I have to sit it out and wait, but he said putting it to use could be beneficial, and I think perhaps this is the case as I feel my sex-drive waning and creating and interesting mind-body conundrum where I can't tell where one influence begins (the injury) and the other ends (my mental state).
Thanks in advance for any advice and taking the time out to read this, it's appreciated. I apologise if the treatment advice is the same as last time (Vit E, ALC etc.), but I am wondering about this hematoma.
nab
TIM/OLDMAN - anyone -
I stopped using the VED about 10 days ago as the battery operated one broke and suddenly a new plaque appeared after I thought that I was getting better - and with the plaque there is the pain and dent - - - -- has this something to do with the break in the VED usage or something else - I am alos on ALC and pentox and the other recommended supps - so this is a very REAL shock to me - whats going n as I thought that I was getting better - what should I do as Im freaking out a bit now and the abyss seems a lot bigger now -
Iceman:
What you are experiencing is not uncommon with Peyronies Disease. You never know when a new "bout" will occur. I really don't think that breaking your VED has anything to do with the new outbreak. You need to get the new pump and get back into the regimen again.
One of my friends here in my hometown broke his pump handle just a few days after he got his VED. He called the company and they sent him a replacement pump in less than 48 hours. If I remember right, you got yours in your country through some help from the sales and marketing manager at Augusta. If this is right, you should go back to the distributor where you got your unit and ask for help there.
I no longer have the contact at Augusta as he moved on to another company. His replacement at this time has not been made, so I have no real good source of help there until I get rapport established again.
Sorry, I cannot offer any more help at this time other than to say that you should get back into the VED therapy as soon as possible.
Regards, Old Man
OLDMAN - i just got the replacement VED ( hand pump version) and I am back on using it - I thought that being on pentox would control the new bouts - is there a reason why this hasnt - sorry for my ignornace
Iceman:
I will defer an answer about the Pentox to George999 since I have had no experience with many oral therapies for Peyronies Disease. He can explain what might be going with you.
I am glad that you got the replacement hand pump model. It gives a little bit better controll over the battery powered model. Also, I believe that the hand pumps are made more sturdy than the others.
I am sure that once George reads your question, he will help out.
Old Man
OLDMAN - im in that much pain to day - I had to go to the doc for some other elbow joint inflammation and I got prescribed Celebrex - it seems to have helped a bit - its terrible just when I thought that I was out of the woods it starts to hurt again -
whats the point in all these supps like alc etc - i feel real defeated now and im starting to get a bit depressed
Iceman, I really don't know what to tell you except that Peyronie's is just really unpredictable. I am SURE that there is a cause for flareups, but trying to pin that cause down is like searching for a needle in the haystack. The whole inflammation issue also tends to be systemic. In my case I am now dealing with fairly intense leg pain. I had it very controlled for a while. Its amazing that sometimes you find supplements that control things, but its like water rising behind a dam. Eventually it just seems to top the dam and spill out everywhere. The good news, though, is that usually it runs its course and things get quiet again. In regards to the supplements, especially things like ALC and Pentox, the problem is that we would probably be worse off without them. Same with VED. There is no cure at this point. That is the reality. There are treatments that seem to help. We need to keep taking them. But its really frustrating, I feel your pain, and this is not just a trite statement, because I am in the same boat. Right now my Peyronie's is REALLY under control. The best in a long time. But my legs are on fire with inflammation. But I just keep plodding along. Taking the Pentox, ALC, etc. I am making a few modifications. I am adding some more antioxidants to see if that helps, and temporarily moving away from full spec E to natural Alpha-Tocopherol since Gamma E with all its benefits can be pro-inflammatory in some cases. I am also taking the D3 and using a quartz lamp on my whole body. This provides infrared heat plus 300 nanometer UV which converts cholesterol to D3 in the tissues. It seems to have been helpful with the Peyronie's. It was initially very helpful with the leg pain (virtually wiping it out) but now the benefits have faded over the last few days. So I am not sure where to go with it from here. Sorry not to be able to be more help. I do wish you the best, but I have my own problems right now. Whatever you do, don't let yourself drown in depression, tomorrow is a new and likely brighter day for all of us. - George
thx george - i appreciate your words.....ill bounce back i always do.....:):)
Iceman:
I echo George999's words about everything he wrote in his post below. Right now, I too experience pain like never before with my legs, feet, ankles and back. Had back surgery many years ago which went bad and now it is impossible to do any further surgery. Spinal stenosis has set in and the nerves are slowly but surely being squeezed down more narrow each year. Pain killers help some, but not always.
So, what I am saying is this like George, you have to adjust to the pain and simply just not let it get you down. Some days, if I gave in to my pain and other problems, I would just go out and end it all. But, I know that is not the way to handle the situation. Bottom line, do your best to think positive and engage in physical activities every chance you get to take your mind off your problems. Know that it is hard to do, but at least try.
It does help to vent your frustration in some manner and the best way to do this is to talk to a trusted friend or your spouse and let it all hang out. If there is anything we on the forum can to do help, just let it be known and we will be there for you all possible. Distance precludes talking with you in person, but the web is the next best thing, so use it to your advantage.
As far as the VED therapy is concerned, you might want to lay off it for a while to get the pain and inflammation under more control. Then resume the therapy on a very mild to moderate level. Keep your chin up!!!!
Regards, Old Man
Iceman
I like Old Man had back pain for over 20 years. Went to a DC for years and this finally stopped helping.
I'm lucky I found a nuero surgeon that had a new procedure for spinal stenosis and degenerated disk. Had the surgery in January and now almost pain free, I can predict weather changes.
This is going to happen with peyronies one day. Some one will come up with a procedure that helps. Never Ever - Never Ever give up. I also know what pain is but will not give in to it.
Like Old Man said if you need support there are a lot of guys here to help if only to listen.
Good Luck
Jackp
thx guys - your support is very very helpful - one can only imaging life pre this forum for Peyronies Disease sufferers
Iceman,
You make a good point. In some ways I and maybe others take this forum for granted at times, but facing some of these issues with Peyronies Disease in isolation can be very tough. We recently hit 2000 registered users and many more guests.
I am glad you made me take a minute to stop an think that the forum has had a positive impact on people as they face a potential crisis.
Hawk
Iceman
I feel really sorry and shocked for what you are experiencing at the moment. My peyronies started about three months ago and I am on pentox an ALC (plus vit. E, D3 and arginine) too. It really makes me sad to read that these medications are not able to stop the progression of your Peyronies Disease. However, like all the others here wrote: never ever give up! Tomorrow is another day and we must not give up! We will get through this!!!
George and Old man
what you wrote about the systemic character of inflammation is very interesting! I cannot remember any injury or trauma to my penis which could have caused my Peyronies Disease. Anyway, exactly when my Peyronies Disease started I had severe problems with my teeth (root canal treatment for 3 teeth!). Additionally I had a very stressful spring this year which may have weakened my immune system too.
All
and now something that should keep our hopes "alive". I know one has always to be sceptical on stories about spontaneous remission... anyway! It is a current post (October 9th) I found on a German Peyronies Disease forum. The post is from a 40 year old guy from Vienna. I have read all his posts from the last 2 years and that brought me to the conclusion that his post is not a fake! To those of you who understand German I would recommend to read the original post (http://de.groups.yahoo.com/group/InduratioPenisPlastica-2/message/1213). For the others I will try to give a short summary:
The guy writes that his Peyronies Disease started some 2 years ago with a pea sized hard lump. In the following months this lump "moved" up and down his shaft leaving severe indentations below the glans and in the middle of his shaft such as multiple hard plaques. The diagnosis was "aggressively progressive Peyronies Disease". He also had ED, which he thinks was mostly for psychological reasons. He had suffered for nearly two years when the pea sized lump which in his experience usually indicated the beginning of formation of new plaques or indentations, showed near the basis of his penis. He was anticipating a new "catastrophe" but it did not happen. On the contrary all the indentations and plaques started to resolve. He writes that at the moment he seems totally cured (even if he knows that it may restart at any time, since Peyronies Disease is so unpredictable).
I don't want to comment on how probable or improbable it is that something similar will happen to us. It doesn't matter at the moment. It is much more important that it DID happen to that guy and it COULD happen to us too!!! Keep your chin up!!!
iceman said "one can only imaging life pre this forum ..."
I don't have to imagine it - I remember. And it was pretty creepy. There was a "forum" of sorts, an unmoderated madhouse that BSTC set up and abandoned. It became a powerful magnet for idiots, jerks and dweebs with no lives, all desperately wanting to post nonsense containing the word "penis" and toss obscenities at each other. Anyone coming across that forum quickly learned that not only did Peyronie's cause your dick to bend, it made you crazy too. What a great public service.
I think BSTC eventually realized that the forum was not just an embarrassment but looked bad to investors, so they deleted most of it. But by then, they'd sold off the rights to injectable collagenase and no longer gave a fig.
Here we have a forum that preserves anonymity but has moderation and controlled logons. People with actual medical knowledge are starting to post here. Potentially effective treatments are discussed. We even start tip-toeing around the edges of the psychological problems surrounding this condition, and sometimes talk about them realistically.
So we no longer have to feel like we've fallen down 3 flights of stairs and are laying in a pool of stagnant water in life's sub-basement. We can be like normal people - maybe even BE normal people.
Didi makes a comment about a German claiming an extended full remission. I have no doubt that this is possible. After all, there are documented cases of amazing remissions with cancer, which is far more daunting than Peyronie's. Peyronie's and all of the other inflammation/autoimmune driven diseases wax and wane. They get alternatively better and worse. If we could just learn *ALL* of the factors driving that process, we would be close to a solution. I do believe the pieces are coming together. If you parse through this forum, you will find a long list of external factors that seem to aggravate Peyronie's AND other factors that seem to alleviate Peyronie's. As you start to put these things together (admittedly a daunting task) things CAN get better. In the process, it is important to carefully note those things that seem to make us better and those things that seem to make us worse. But it is equally important to proceed in an evidence based fashion, not wandering around in response to emotions or reaction to the twists and turns of the syndrome. We *KNOW* that Pentox is helpful because A) there is at least one study that lends credence to that conclusion, B) the pharmacology of the drug indicates potential benefit, and C) there are multiple highly trained specialists advocating its use. We *HIGHLY SUSPECT* ALC to be helpful because there is at least one study that shows benefit. We should *EXPECT* Vitamin D to be helpful due to emerging details of its pharmacology in terms of inflammation/autoimmune processes AND studies showing people with inflammation/autoimmune type diseases to be typically deficient. AND we *KNOW* the VED to be helpful due to countless Peyronie's sufferers who testify as to its usefulness. I am fully convinced there is a way out of this problem. We haven't fully identified it yet but we are extremely close.
The recent explosion of knowledge regarding Vitamin D is just huge. And with Vitamin D it is not simply a matter of just popping a few tabs and things rapidly get better. It takes many months on large doses of Vitamin D to build up serum Vitamin D levels. And there are still open questions as to whether the body can actually convert that nutrient to its active form in sufficient quantity to do the job. But there is no doubt in my mind that proper use of Vitamin D is just one more strategy that can at least slow this thing down. But I would caution anyone taking large doses of Vitamin D to coordinate it with your doctor and be sure to get a simple and inexpensive blood test for serum calcium levels so that you don't poison yourself. It is also important to be careful not to take in too much calcium when taking in high amounts of Vitamin D as this can also drive serum calcium levels to high. And excessively high serum calcium levels can put you at risk of dying. So this is a serious issue. But the potential benefits of Vitamin D supplementation really are huge in my perception. - George
GEORGE999 - are you talking about Vitamin D3 or a generic vitamin D?
Thx
Welcome Whyme. It's ok to calm down now because I have some news for you. Life as you know it isn't over and you don't have to stay in the abyss you mention. You don't mention the degree of your curve or whether you are able to have intercourse or not. Go to your uro and report back with what is found and what is said. If you've lurked here for a while you know what most men are told to do... or not do. Popular answers are go on vitamin E for 6 months and see what happens, wait one year and see what happens, leap right in to surgery and being told it's the "only cure" and many other things.
You have a challenge coming up and that is to leave the abyss behind. It is in your own mind and no doubt there are friends and family near you that are having a hard time figuring out what's changed with you. If you are diagnosed with Peyronies, then so be it. Life is not over. You will meet the girl of your dreams and fall in love. If you base future relationships on your penis, its shape and whether it's what you see as being visually acceptable, then that's what the relationship will be built upon and that's not good, so you need to stop planning future relationships progression on the shape of your penis. If your curve is gentle and not too extreme, you know from reading here that intercourse is still possible and life will go on. Do not dwell in the abyss worrying about what women might think of what your penis looks like. It's not worth it, is usually based on mis-conceptions of how women think, and is destructive thought. Let it go because you are a lot more ok right now than you think.
This post isn't meant to demean you or shock you. Every man on this board has endured his personal abyss now or in the past with this disease. I welcome you to the board as a place where you can get real answers to real questions about your situation. There is a "women speak out" thread that I hope you've read as you might find womens answers to mens questions about how women are affected by this condition a little surprising. Don't put notions of how you believe women think about penises in the mix yet as it's not worth it and probably somewhat off-base. A lot of guys here just KNEW we had it nailed and figured women would shun us as freaks, and we were wrong.
Come back with news from your uro visit. Post questions you will have about what you are told to do or not do. You've got a lot of livin' to do so decide right here and now that you will start the process of deciding that you will not be miserable over this. I can't paraphrase everything said on this board about this, but I hope this is a start for you.
Quote from: Iceman on October 17, 2008, 07:58:34 PM
GEORGE999 - are you talking about Vitamin D3 or a generic vitamin D?
Thx
Vitamin D IS Vitamin D. The "3" in D3 merely indicates the FORMULATION of the particular product. Vitamin D is commonly available as Vitamin D2 and Vitamin D3. Vitamin D2 is the original Vitamin D supplement. Vitamin D2 is the form found in some mushrooms and used to be used to fortify foods. It is the plant based version. Vitamin D3, a newer product is an exact match to the Vitamin D produced by exposure to sunlight. Vitamin D3 is the form found in fish and most other animal based and fortified foods. Both have the same effect of raising levels of Vitamin D in the body, but Vitamin D3 is considered to be more than three times more effective than D2. The process is that as one takes larger doses of Vitamin D, most of that Vitamin D is soaked up by fat cells which function as a sponge to store Vitamin D in the body. The more saturated that sponge becomes, the higher the level of available Vitamin D in the bloodstream becomes. When the sponge becomes totally saturated, toxicity emerges. Thats where we DON'T want to go. Vitamin D resulting from sun exposure becomes immediately diffused in the local tissue and is thus likely able to temporarily boost localized levels of Vitamin D higher than oral consumption. Oral consumption raises the baseline levels of serum Vitamin D. Vitamin D is Anti-Inflammatory but Inflammation consumes Vitamin D in the Body. So inflammation tends to lower Vitamin D levels which results in higher levels of inflammation with the potential for a sort of looping feedback effect. A lot more information on Vitamin D can be found on Wikipedia (http://en.wikipedia.org/wiki/Vitamin_D) and The US National Institutes of Health Office of Dietary Supplements Site (http://ods.od.nih.gov/factsheets/vitamind.asp). Wikipedia offers up diverse but not totally authoritative information while the NIH site offers a narrower scope of very authoritative information. - George
PS - The studies on Vitamin D just continue to pour forth. Here is an example (http://tvnz.co.nz/view/page/411319/2214888).
whyme 08 - have you tried to go on pentox and ALC???
Some guys take a picture of the curve, print it and take it to the uro. A tracing or outline on paper would do the job as it would show the uro exactly what you have. You'll also want to be ready with your story as to what happened, if anything, right before the symptoms started. Report back with what the uro says and we'll go from there.
I re-read your first post. You are an informed, intelligent young man that has had this condition dropped in your lap. I know first hand how this disease (or condition or whatever we want to call it) can wrack a man, and how it affects a young man forming his plans for the future family that is in his dreams. Step 1 will be to stop convincing yourself that you are now useless to women. You don't see it that way right now, but as hard to believe as that is, it is true. Men see their usefulness or utility to women as 95% dick and 5% everything else. I suggest, if you haven't already done so, that you start by ignoring the tv commercials for various pills that enlarge and empower the penis into some kind of nuclear flux capacitor that can lay waste to the countryside and that women only live to attack these supermen in elevators. The media is powerful. Marketing people aren't stupid and the commercials appeal to a mans displaced wish to be "all that" and to be an irresistible superman with a ball bat for a penis that can't turn around without knocking over table lamps.
Step 2 will be to focus on your lifes positive attributes and I'm sure there are many. Begin supplements for general health. Work out more. If you've been laying around a lot, force yourself out and get something going like a racketball game with someone you haven't seen for years. Get up, move and get the blood pumping. Enjoy friends, work and family. This condition has got you down, but do not obsess on this. Your life and future isn't over... it's just begun. One of our senior members here has had Peyronies since his 20's. He has studied, read, seen uros and done all manner of treatments for many years. He is now in his 70's and going strong and has a list of life accomplishments and experiences that is staggering. And he has licked Peyronies. And all his information is here. It wasn't an easy battle and it certainly wasn't quick. There is no cure. Nope. None, unless you accept surgery as a cure... personally I do not. But there are those on the forum that refuse to accept that as an answer. There is enough information here to help straighten out minds and penises. Some men respond with straighter erections and some don't. Lots of men who are dedicated to therapy and stick with a program see better results than those who play around with a treatment and don't stick with it.
I'm no shrink or superman, but I do know a bit about how Peyronies doesn't play fair and how it affects men. Try your hardest to put this thing in its place. You've got to have a lot of questions... find the threads and post away.
Whyme08:
I am the guy Angus posted about having Peyronies Disease in my early 20s. Yes, I too had the same feelings you have now and Angus has given you some sage advice about what to do with your mindset at this time. Get out of the doldrums with obsession about Peyronies Disease and its effects on your future life.
Many treatments, therapies and the like have gone under the bridge of life for me in finding something that worked to help with my several bouts with Peyronies Disease. Yes, I say bouts, because it has come and gone several times during the 50 odd years since it first struck.
As Angus says, get to thinking positive, get the professional help you need, and get on with your life. All is not lost simply because you have this problem.
I have been happily married for over 45 years now, have three grown children and eight grandchildren. So, you can see that Peyronies Disease has not hampered me in making a life for myself with a very understanding wife. Peyronies Disease should not cause you any major problem if you think positive and get the help you desperately need at this time.
Take Angus' advice, do your homework with the uro/specialist and report back to us with what you were told about your case. Then, we can possibly get your on the right track with some form of therapy.
Good luck to you and keep the faith, something good can and will happen for you.
Old Man
Sorry for the "stupid" question, but English is not my mother tongue... I found "bb sized" or "bb shaped" in a lot of posts here. What does that mean?
Sorry for bothering you!
The only stupid question is the one that is never asked! Ask any time anything that you read is confusing and maybe we can iron out the little quirks of the English language.
A BB is a small round pellet shot from airguns that used to be common in the U.S. with young boys, so lots of North American men are familiar with BB's and know right away what size they are. A BB is 0.177 US inches in diameter, or metric 0.45 cm in diameter. So this refers to a fairly small nodule or knot-like object on the forum.
Thanks a lot, Angus! :)
Does anyone know if an hourglass shape necessarily portends Peyronies Disease?
I'm 26, and a year ago I had a Nesbit Plication to correct a deeply downward curvature. I had it after years of struggling with Peyronies Disease and I thought I had finally put it all behind me. My erection pointed to the left a bit after the surgery, but otherwise was straight, and I was really grateful.
But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid). I'm terrified I'm redeveloping Peyronie's Disease. I haven't noticed any changes to my erection yet, but I'm so afraid that it's only a matter of time.
My big problem is that I lost my health insurance since I had the surgery, and while I might get it back soon, I have nobody to ask about this problem.
For those suffering penile pain that eventually leads to curvature, do you think there is any correlation whatsoever between the length of time pain is present (weeks/months/6 months+ etc )to the eventual outcome?
Quote from: Thanatos on October 22, 2008, 05:15:48 PM
Does anyone know if an hourglass shape necessarily portends Peyronies Disease? ...
But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid).
Welcome Thanatos,
I am not sure I understand your comment. You say in parenthesis that you always had the hourglass. Do you mean prior to surgery and now it is back?
Did your history of Peyronies Disease begin with an injury?
Hawk
Quote from: Thanatos on October 22, 2008, 05:15:48 PM
But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid). I'm terrified I'm redeveloping Peyronie's Disease. I haven't noticed any changes to my erection yet, but I'm so afraid that it's only a matter of time.
Any change in condition is worth keeping an eye on. It's worth mentioning that the symptoms of many people here come or are constantly in flux, so it may not be the case that what you are currently experiencing will get worse and worse over time. These developments could potentially be peyronies symtoms (unless you are stating that you literally 'always' had an hourglass shape), but it may be too early to tell because as you state your erect state hasn't changed as yet. It may be a case of 'wait and see'.
In the meanwhile you could explore making changes to your diet, exercise regime and taking certain supplements. The supplments are detailed on this site and at this worrying time for you they will help to insure that you're doing everything in your power right now to combat this potential development.
Just yesterday I noticed that my erection now point out very slightly to the right by <5 degrees (in addition to the already downward curve). What I did yesterday involved putting on some tighter underwear and putting my flaccid penis against my stomach, i tried that only for maybe a few hours. I also noticed that in addition the slight rightward deviation, one of the "chord" like objects near the base of my penis (on the right side) seems to have protruded more when erection was obtained. Will this hopefully go away very soon?! Or should i be going to some emergency department ?! I'm very very confused and anxious now, I have a uro appointment in a few days could it wait for that?! HELP
Well here goes....
I am totally new to this and my doctor has diagnosed me and prescribed potaba, topical verapamil ( from wedgewood in NNJ) vit. e and cialis daily... I have hourglass and just started to bend up ...really stressed over all this as only you guys know. I already have so much other stress in my life on top of this. I have not started any treatment as from what I read here none of the above treatment is worthwhile and a waste of time and money SOoooooo... what do I do first. Get a new doc? Please rec. one in NYC area (milhall????) I got this from what I can remember first noticing it in march/april. Do I skip above and do traction (what unit), vacum ( what unit), pentox, collgnase? both traction and ved are not anything I could do with my work or lifestyle...should I just watch and wait and see if it resolves itself as most case do? I am in very good health, fit and have no other medical issues or meds. I think I better start doing something effective soon as it is now clear a bend is going to be added to the hourglass.
I guess I need to sum up as follows..after going to a urollogist..what is the first thing a new guy should do to prevent progression...
Anyone !!?? I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!
Quote from: worried on October 23, 2008, 06:24:30 PM
Well here goes....
I am totally new to this and my doctor has diagnosed me and prescribed potaba, topical verapamil ( from wedgewood in NNJ) vit. e and cialis daily... I have hourglass and just started to bend up ...really stressed over all this as only you guys know.
I guess I need to sum up as follows..after going to a urollogist..what is the first thing a new guy should do to prevent progression...
Worried, I am convinced that Potaba DOES help. HOWEVER, I refused to take Potaba when my doc prescribed it because it requires that you take a huge number of pills four times a day WITH food each time. I found that very impractical, not to mention a sure prescription for weight gain which I can live without. Instead, I went for Pentox. I believe it to be more effective, safer, and easier to manage than Potaba. It is also far less expensive. But it IS off label, which means that, although it is a proven generic drug that is used for fibrotic conditions, it is NOT approved for treatment of Peyronie's. But I would get a copy of Dr. Lue's paper on Pentoxifylline and show it to your urologist and see if he might be willing to prescribe it for you. If not, I would try to find a urologist in your area that WILL prescribe Pentox and then try to get a referral from your urologist. The alternative would be to try to get an appointment with Dr. Lue himself. Flights roundtrip from NYC to SF should be quite reasonable in price and it would probably be worth the money for you. Dr. Lue is a Peyronie's expert but he does require screening by a local urologist AND a diagnoses and referral up front. So, in any case, keep a good relationship going with your current urologist as best you can.
Second, ALC is helpful and can be used in conjunction with Pentoxifyline without any problem. This needs to be Acetyl L Carnitine and not just Carnitine. They are not the same and only Acetyl L Carnitine was found effective in at least one trial.
Third, I recommend Vitamin D. If you drop down and read some of my posts here, you will see why. Deficiency in Vitamin D causes all kinds of problems in the body. The best form to supplement with is D3. Sunlight also works of course, but not so well in the winter at your latitude. You should try to seek your physician's cooperation with the D3 as it can raise blood calcium dangerously in rare cases. I am taking 10,000 IU now and am going to bump that up slightly to 12,000 IU. I have found it helpful. There is actually a Peyronie's trial going on now in Brazil with Vitamin D3. I bumped onto it some days ago and stupidly did not save the link and now I can't find it.
Fourth, Vitamin E and Ciallis are fine with all of the above and some have found Arginine helpful as well. Be sure to get a good quality natural Vitamin E, the full spectrum kind is best, and the best form of Arginine I have found is SAN VasoFlow. - George
PS - A (very) small number of people have reported benefit from Topical Verapamil, most feel it is useless, a few are convinced it is a downright fraud. Oh well ...
Quote from: wayne999 on October 23, 2008, 07:45:15 PM
Anyone !!?? I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!
I am sorry that this is happening to you. As I am sure others here will attest to, I would NOT try to force your penis in the opposite direction from the curve. This can lead to additional scarring. Unfortunately, it appears there is some progression in your Peyronies, one that is similar to what I experienced. And with mine, when this happens, the chord-like whatever that is running from the base to the top of my penis protrudes more...
What are you taking? Get to a uro. Have you had an ultrasound done?
Geroge,
WOW...I am breathless and can't thank you enough for breaking it down for me... THIS IS EXACTLY what I neede and you provided it... a genreal summary and direction, plan and where to go, to whom and the experts etc..
I have spent hours trying to glean this enough myself and it gets overwhelming and depressing.
It is so ez to descend into these matters and loose yourself...the more info the better and the sharing the the better but I needed teh jump start you gave me thanks,
BTW: topical verapamil... my doctor told me he doubts it works but perscribed it as there were some dubious studies that said it might be of help and he noted that he had a patient just call him this week saying that he should cancel his surgery becasue he thinks teh verapamil is working a little bit, but even the doctor told me that the patient is really just scared of teh surgery and that the verapamil really is not working or making any noticable clinical difference but alot of this is in guy's heads, wanting stuff to work and seeing "improvement" which he said in a way...keeping hopes up is a big part of manageing a incurable difficult disfiguing disabling disease.
Worried, I would also caution you that the steps I am suggesting will not likely "cure" your Peyronie's, but they will almost certainly arrest its development so that it doesn't get any worse. I think it is very important to do that at this point since there are new treatments coming. One of those of course is Xiaflex (collagenase), but the likelihood of your getting into a trial at this point is probably slim. At the point you are at now, you really need to get ahead of this quickly and stop its progress. Of course, doing so early like this actually opens the possibility of even getting rid of it completely as well and I do hope that that is how it works out. But the reality is that doesn't happen very often, even with treatment. I wish you the best! - George
Geroge,
FIrst off a chance to contribute..
here is the link you were looking for..
http://www.controlled-trials.com/ISRCTN82950322/
study is scheduled to end in 20010 and is likely to be extended.
"To evaluate the effectiveness and safety of the combination of hyperthermia, vitamin D and testosterone in the treatment of Peyronie's disease compared with hyperthermia alone. "
more info:
"Patients will be randomised to:
1. Control group: 30 patients will be treated with hyperthermia alone (30 minutes/day with infrared lamp of 150 W at a distance of approximately 20 cm of the plaque(s) and curvature)
2. Experimental group: 30 patients will be treated with hyperthermia (as above) plus Vitamin D (4000 IU/day/oral) and one injection of Testosterone depot (Durateston®) every 2 weeks initially (patients with baseline levels of free testosterone under median normal level)
All patients will have to return every month and levels of testosterone and vitamin D will be analysed to reach the goal of median normal level of free testosterone and maximum normal level of vitamin D. Every 3 months, levels of PSA and Haemogram will be analysed and at 6 months and 1 year digital rectal examination and also ultrasonography and photos of penis on erection will be analysed. "
NOTE THE D DOSAGE 4000IU/day.
it is interesting.... for the first few months I noticed something... it was no big deal and nothing much changed from that but all of a sudden very recently I did notice something just slighty start to bend liek there was a change all of a sudden about to go on maybe...I know realize that this is what is the problemand should be slowed or prevented
so it will be d3, e, and protaba and hyperthermia for me this weekend until I can get to a better urologist and get pentox... I just can't seem to get my head around the whole traction / vacum thing yet... I just don't have the privacy or the emotional and mental courage to go there ...yet (ugh!)
thei si so simple on one level and connected to many other common populous and disfiguring and disabling diseses that I can't imagine that something will not be done for these fibroblasts soon. But soon may be a very very long time.
Quote from: alcohen on October 24, 2008, 10:24:48 AM
Quote from: wayne999 on October 23, 2008, 07:45:15 PM
Anyone !!?? I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!
I am sorry that this is happening to you. As I am sure others here will attest to, I would NOT try to force your penis in the opposite direction from the curve. This can lead to additional scarring. Unfortunately, it appears there is some progression in your Peyronies, one that is similar to what I experienced. And with mine, when this happens, the chord-like whatever that is running from the base to the top of my penis protrudes more...
What are you taking? Get to a uro. Have you had an ultrasound done?
Thanks for your reply, I was surprised you were the only one to have done so!
My chord-thing doesn't run up the shaft to the head, it's more of across the shaft and extends for maybe an inch. There seem to be 2 on either side. I'm just taking vit E, gingko and fish oil. I will see a uro very shortly and an ultrasound I had done several months ago (before this rightward deviation stuff, which is only a few days old) didn't show up any calcification or "evidence" of Peyronies Disease.
I also had a look at a few photos I took a month ago, and it seems like there may have been a very minor rightward deviation even then......but it just hit me the other night that it wasnt pointed out straight but had that slight tilt - so I'm not sure if im going crazy about all of this but it seems coincidental that the tight underwear episode and my noticing the right deviation occured on the same day.
Quote from: George999 on October 24, 2008, 11:32:20 AM
Worried, I would also caution you that the steps I am suggesting will not likely "cure" your Peyronie's, but they will almost certainly arrest its development so that it doesn't get any worse.
Does this mean that you are of the belief that those starting on this regime in the very early stages of peyronies (just pain, or lump - no bend) will be unlikely to develop worstening symptons. Is that not something of a lofty claim? Don't get me wrong, the statement may well have merit, but are you confident of this?
Quote from: wayne999 on October 24, 2008, 07:23:22 PM
Quote from: alcohen on October 24, 2008, 10:24:48 AM
Quote from: wayne999 on October 23, 2008, 07:45:15 PM
Anyone !!?? I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!
I will see a uro very shortly and an ultrasound I had done several months ago (before this rightward deviation stuff, which is only a few days old) didn't show up any calcification or "evidence" of Peyronies Disease.
Important question, was your ultrasound done while you were flacid or erect (via injection)? I am still waiting to have mine but it is my understanding that many times Peyronies plaque and/or scarring can be only visible when erect during an ultrasound because that is when the erectile bodies are stretched and the tears and scarring can be seen. Your ultrasound was a "no problem found" diagnosis?? Obviously there is something going on.
Quote from: Hawk on October 23, 2008, 01:34:51 AM
Welcome Thanatos,
I am not sure I understand your comment. You say in parenthesis that you always had the hourglass. Do you mean prior to surgery and now it is back?
Did your history of Peyronies Disease begin with an injury?
Hawk
Hawk – Sorry for the unclear parenthetical. Yeah, when I said I always had the hourglass shape, I meant "always" prior to surgery, and that now it's back (after almost a year of no problems).
I am not sure my condition began with a specific injury or not. I grew up in a fundamentalist household, and I never dared look at my erection until after I went to college. Before then I would masturbate in the dark, through my clothes, rubbing downwards. I did have an incident in high school where a guy assaulted me, and kicked my crotch really hard several times, which led to bruising I didn't tell my parents about. The urologists I saw (I saw several) thought that either masturbating through my clothes or the assault could have led to condition.
My problem now is that there aren't any specific explanations for the hourglass shape. I haven't had any trauma since my surgery.
~~~
Quote from: newguy on October 23, 2008, 02:13:00 AM
Any change in condition is worth keeping an eye on. It's worth mentioning that the symptoms of many people here come or are constantly in flux, so it may not be the case that what you are currently experiencing will get worse and worse over time. These developments could potentially be peyronies symtoms (unless you are stating that you literally 'always' had an hourglass shape), but it may be too early to tell because as you state your erect state hasn't changed as yet. It may be a case of 'wait and see'.
In the meanwhile you could explore making changes to your diet, exercise regime and taking certain supplements. The supplments are detailed on this site and at this worrying time for you they will help to insure that you're doing everything in your power right now to combat this potential development.
newguy – Thank you for your advice, it is reassuring to know that Peyronies Disease doesn't just escalate, which was my fear. I'm actually really fanatical about diet and exercise, I do weights, HIIT, and have a low-glycemic diet. I already take bromelain (I figured I need it anyway since I drink protein shakes after my workouts), but I have avoided gotu kola and ginkgo biloba because they aggravate my erythamous rosacea. I'll definitely peruse that forum a bit more for some other ideas, I'm always open to more supplements.
~~~
Quote from: worried on October 23, 2008, 06:24:30 PM
I am totally new to this and my doctor has diagnosed me and prescribed potaba, topical verapamil ( from wedgewood in NNJ) vit. e and cialis daily...
worried – Before I had surgery, one of the treatments I tried was topical verapamil, and it did absolutely nothing for me. It was a year wasted out of my life and I resent having wasted my time and money that way.
Quote from: Thanatos on October 25, 2008, 06:46:52 PM
newguy – Thank you for your advice, it is reassuring to know that Peyronies Disease doesn't just escalate, which was my fear. I'm actually really fanatical about diet and exercise, I do weights, HIIT, and have a low-glycemic diet. I already take bromelain (I figured I need it anyway since I drink protein shakes after my workouts), but I have avoided gotu kola and ginkgo biloba because they aggravate my erythamous rosacea. I'll definitely peruse that forum a bit more for some other ideas, I'm always open to more supplements.
This kind of relates back to my previous message to George. I'm sure that using the tools this forum has pointed us towards does help somewhat and in many cases significantly, but it's hard to know how any particular case will react to treatment. In terms of reducing curve, the VED has proved itself beyond doubt. Of course, it won't work for all people, but for some of the familiar faces here it has been a relevation. Traction also has good potential. George is a walking, talking vitamin with arms and legs, and there's another angle that this can be tackled from :).
It's all about managing the condition until better treatments come along. There are trials taking place as we speak which will hopefully result in more effective treatments. It's a painful waiting game, but it's without doubt better to be pro active than not.
Quote from: alcohen on October 25, 2008, 10:26:33 AM
Important question, was your ultrasound done while you were flacid or erect (via injection)? I am still waiting to have mine but it is my understanding that many times Peyronies plaque and/or scarring can be only visible when erect during an ultrasound because that is when the erectile bodies are stretched and the tears and scarring can be seen. Your ultrasound was a "no problem found" diagnosis?? Obviously there is something going on.
It was done in the flacid state. Can scar tissue be detected only in the erect state??
Yes, it was a "no problem found" diagnosis and it was suggested by uro's to be congenital etc.
Quote from: Thanatos on October 25, 2008, 06:46:52 PM
I am not sure my condition began with a specific injury or not. I grew up in a fundamentalist household, and I never dared look at my erection until after I went to college. Before then I would masturbate in the dark, through my clothes, rubbing downwards. I did have an incident in high school where a guy assaulted me, and kicked my crotch really hard several times, which led to bruising I didn't tell my parents about. The urologists I saw (I saw several) thought that either masturbating through my clothes or the assault could have led to condition.
Thanatos: Your description of masturbating through your clothes, rubbibg downwards seems consistent with what i posted in the Causes of Peyronies Disease thread, namely this idea of "traumatic masturbatory syndrome". I too believe that in my early childhood, masturbating against the mattress, pillow or floor caused my current downward curvature.
I was wondering, how much length would you estimate you lost after your Nesbit plication? Did uro's also tell you it was more riskier because you had a downward curvature i.e. plication would need to take place near the nerve bundles on the top side of the penis?
Quote from: newguy on October 25, 2008, 11:34:37 PM
This kind of relates back to my previous message to George. I'm sure that using the tools this forum has pointed us towards does help somewhat and in many cases significantly, but it's hard to know how any particular case will react to treatment. In terms of reducing curve, the VED has proved itself beyond doubt. Of course, it won't work for all people, but for some of the familiar faces here it has been a relevation. Traction also has good potential. George is a walking, talking vitamin with arms and legs, and there's another angle that this can be tackled from :).
It's all about managing the condition until better treatments come along. There are trials taking place as we speak which will hopefully result in more effective treatments. It's a painful waiting game, but it's without doubt better to be pro active than not.
newguy – Yeah, medicine is unbelievably primitive. I also have rosacea, another game of interminable waiting while they grasp at straws to find something. There I also try supplements to moderate the symptoms, but nothing really works.
I have read George's posts and I'm considering adding a separate Vitamin D supplement to my regime.
~~~
Quote from: wayne999 on October 26, 2008, 12:53:26 AM
I was wondering, how much length would you estimate you lost after your Nesbit plication? Did uro's also tell you it was more riskier because you had a downward curvature i.e. plication would need to take place near the nerve bundles on the top side of the penis?
wayne999 – No, my urologist didn't mention any extra risk from it pointing downwards, and I didn't have any complications. I lost about 1-1/2 inches (I had a very severe downward bend, though, which is something to take into account if you're considering a Nesbit plication), but I had 8 to begin with, so it was worth it.
newguy, All I can say is that everytime I have suffered a major setback it has been at a time when I was either off of the key supplements OR when I was off of my strict diet. So I do believe that those key supplements I mentioned and Pentoxifylline can halt the advance of Peyronie's. Actually Dr. Lue's staff, from the feedback they have gotten, believes that Pentoxifylline will usually stop the advance of Peyronie's. This is NOT to put down the VED. I would be the first to acknowledge that the VED can also stop the advance of Peyronie's. It is just that for some of us the VED route works better and for others the drug/supplement route works better. And there are others of us that are doing mix and match with both of those. But I absolutely maintain that there ARE ways to stop Peyronie's from becoming worse, but curing it is more elusive. I think we are getting VERY close, but we are not there yet. - George
Overall, George, most of us either get better very little, or only with the VED.
Your improvement is due (I think) to your close attention to diet and exercise, weight loss with that, and possibly due to a difference in the nature of your Peyronie's (ie the way it comes and goes so fast and seems to be characterized by induration and not dense fibrosis).
Tim
Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.
The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".
Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.
These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.
I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.
Thank you all here for what you do, a great service to man.
Regards
Mike
i thought I was getting better ,ie the plaque was getting softer and reducing in size and the pain was going - suddenly a new bump has reared its ugly head on the left hand side - a brand new bump with all the associated new pain and crap that goes with it - its amazing how you cannot predict this and that a new bump appeared and I keep doing all the right things as far as supps and ved goes - why is this happening.....the pain this time is becoming unbearable.....
Iceman:
Sorry to hear that you have now have seen a regression of your Peyronies Disease. Unfortunately, this can and will occur. There seems to be no way this mess can stay stable in some guys. VED therapy does not necessarily cause more symptoms, they just happen. I know first hand, as this occurred to me several times during the past 55 years. One therapy helped for a while, Peyronies Disease returns, try another therapy, Peyronies Disease returns and so on.
You should at this point slow down with the amount of vacuum pressure you are/were using for your VED therapy. It might be wise to just not do it at all for a while to see if the pain and other things abate somewhat. Experiment with varying amounts of pressure to find the right combination that does not cause pain when using it.
If the pain continues to be overwhelming, I would suggest that you cease the VED therapy until you get over the heavy inflammation of this bout with Peyronies Disease. Take any oral meds that will help with holding down the pain, etc.
Keep us up to date on how things progress for you so that we can benefit from your experience. Let us know if there is anything we can do to help.
Old Man
Iceman, Old Man is right. This stuff is just so unpredictable. That is why I just laugh when I hear people talk very authoritatively about first the active stage and then the stable stage and so on. All you can do is try to keep track of what tends to set it off and what tends to calm it down. I don't think you are doing anything particularly wrong, you just aren't there yet. And to make matters more frustrating, what works for someone else might not work for you. And sometimes you find something that seems to work really well for an extended while and then everything just seems to turn to ashes overnight. At this point I have suspected the ALC of messing up my problem with my legs, so I quit it a few days ago. My legs, indeed, have gotten better and I am hoping the Peyronies doesn't take off again. But so far the Pentox, Vitamin D, and light treatment seem to be keeping it very much in check. But who knows about tomorrow? Each day is a new challenge. But new treatments are on the way, just hang in there and keep working at it. I wish you the best through all of this. - George
Quote from: mikesb on November 03, 2008, 10:26:16 AM
Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.
The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".
Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.
These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.
I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.
Thank you all here for what you do, a great service to man.
Regards
Mike
Port, I just don't believe the classic view. This disease can go from active to chronic and then repeat the whole cycle again. I do believe that typically one can have "plaques" that are solely the product of inflammation. This then is what some people would refer to as the active stage. One can also have fibrosis with no "plaques", however, I do not believe that this precludes inflammation. Inflammation can persist at a very low level. Neither do I believe that calcification precludes inflammation. And I believe this inflammation is a product of an auto-immune process. I also believe that if you can actually get this inflammation down to zero and keep it there, your body can heal no matter what stage you are in. But the presence of fibrosis makes it more difficult to root out all of the inflammation and the presence of calcium deposits in the tissue makes it doubly difficult to eliminate the inflammation. But I do believe it is possible and I believe that Lue's study reinforces that concept. Unfortunately, I am not sure it is possible in a practical sense for most of us to achieve that, but, I for one, am going to keep trying. - George
GEORGE999 - Ive got a prescription from the doc called MOBIC its a powerful anti-inflammatory so I will take these for a month or so to see if it works...i didnt want to go down this path but given the intensity of the pain I really am left with no option.
Pentox seems to be doing nothing and this is very very very disappointing!!!!
Iceman:
I have taken Mobic for quite a while for my arthritis while it was under the brand name. It went generic under the name of Meloxicam, but it did not help either.
Have taken quite a number of the NSAIDs, but to no avail for either my arthritis or Peyronies Disease.
Old Man
YMENOW
Did you mean to add any comment after quoting my newby post or are you indicating you have/had similar symptoms and history?
Still looking for good advice re questions for the urologist. I intend to bring photos to demonstrate the current state of the disease. Any other advice gentlemen?
Regards
Mike
Quote from: Port on November 05, 2008, 06:06:32 PMA lot of doctors like to rush their patients into surgery as soon as possible and maybe some of those patients could've had improvement like the man above had they been given some extra time to heal and try different things? Of course, most guys that have had peyronies for awhile are desperate and their self esteem has taken a hit, so the doctors know they are likely to be swayed into a major surgery when they otherwise wouldn't.
Do remember also that there is a lot more $$$ in doing surgeries than there is in prescribing pills like Pentox. Pentox, over time, kills inflammation. But it takes a long time to achieve that via a slow and arduous process. I am convinced that if you kill the inflammation, you can kill the Peyronie's. To that end I am now focusing on Pentox (to partially inhibit TGF Beta1), and Vitamin D, both delivered by both pills and full spectrum light (to partially protect healthy tissue from the remaining TGF Beta1). This is markedly shrinking the inflammation driven plaques and I am hoping over time it will actually eat away at the fibrosis. This, like the equally effective VED, is tedious, but this is not an easy disease to manage and for me the results have been more than worth the effort required to achieve them. Peyronie's, in my veiw, is a disease where just stopping it from progressing is hugely helpful. - George
Hi everyone!
I'm a 30 year old guy from Sweden. I am very happy to have found this forum and have spent a lot of time reading your posts. It has been very informative and I am very impressed, and happy to see, the care you show for each other, and the high morale you have in the fight against this disease. It fills me with hope!
I would like to tell you my case, so that you who have greater knowledge than me in this disease could please maybe help me understand some things about this disease. In my readings on this forum I have not found any case that sound exactly like mine – but I have also learned that no two cases seem to be the same...
My first observation was 2 ½ years ago. I noticed that my penis during erections become bent upwards 10-20 degrees starting about 1 ½ inch from glans penis. I had no pain at all. At the time I didn't much care about it.
2 years ago I quit using Propecia (which I had taken to stop hair loss) after I read about some adverse effects of it, one of which was Peyronies disease. Now realizing that my curvature was a progressing disease I launched into a heavy depression. Now I also developed prostatitits, inflammation in the prostate, although the doctors couldn't feel any enlargement of the prostate I felt the classical prostatitis pains in pelvis, testicles and in the penis. I could never tell if pain in penis was due to inflammation in the penis or sensations caused by the prostate inflammation.
I was put on SSRI for depression and my pains subsided over a couple of weeks to occasional light sensations in penis and elsewhere in genital area. By this time I finally got a time at an urologist. He did an exam of the penis and couldn't find any plaques, neither have I myself ever felt one. He prescribed diklofenak (NSAID), I don't know the English name for it, it is a COX inhibitor, meant to stop inflammation.
During the year that followed my observations of my penis, of course, became daily routine as I worried about what was going to come. My pain sensations didn't get any better or worse, actually I felt that the NSAID made the sensations a bit more nagging when I had them. I have never had any pain during erection or ejaculation, but after ejaculation I sometimes feel sensations in penis and prostate after an hour or so (yet again don't know if pain in penis is "real").
Since the NSAID didn't seem to do anything we quit it a year ago – I haven't really felt any difference.
During the year on med I saw that the penis became a bit shorter, thinner, and the "shell" around the penis felt less flexible. After I quit taking the med a year ago I haven't notices any dramatic changes, it's really hard for me to know when and where the changes occurred, and if they have stopped.
Now I recently quit SSRI but my worries about this disease made the depression come back, and with it the pains in the urogenital area (it seems that negative thoughts and anxiety make me feel pain down there). I have restarted SSRI and will try to phase it out more slowly in a while, but before that I MUST learn to cope with this disease to be able to live normally.
My largest fear is this: Although the current changes are bearable and I can have sex normally (my wife is wonderfully understanding) I fear that I am still waiting for the worst since most seem to say that plaque formation and calcification is the end state. But I haven't felt any plaque or hard tissue does this mean that this will come, and when it comes my penis will become either too short or too crooked to have sex? That's how I think. It has become such a great fear
It's been 2 ½ years since I saw the first curvature, still no plaques, and not so severe changes, is it possible that my disease have stopped some time ago without these things, and if it continues, that maybe my type of inflammation doesn't give well defined plaques?
Man this post became large... I guess I really needed to get the story out of me. If you have read this far and have something to say, please know that it would be greatly appreciated! My wife and I will soon start to try to have kids, I fear so much that progression of this disease will prevent us...
I am currently not on any medication for Peyronies Disease, I never believed NSAID helped, I was told vitamin E didn't help. I have a really hard time seeing my uro prescripe me anything except NSAID for this, the knowledge in Sweden about Peyronies Disease is null... Only good thing about it is that our healthcare is free, what good that now is when what you get is nothing...
Nils:
Welcome to the forum. You have a case quit similar to a number of guys on the forum. Each and every case of Peyronies Disease is different in some way from any other. You are headed in the right direction by seeking professional help early on in the process it takes. Pain is hard to bear especially in the urogenital area like yours.
The prostatitis may contribute to the pain you are having. I know when I had prostatitis that my whole "bottom area" hurt all the time. Taking antibiotics for that usually relieved the pain. You said that you prescribed Diclofenac (U.S. spelling) which is an NSAID. I took Mobic for several years during the brand name stage and later my insurance switched me over to the Meloxicam. I also took Diclofenac for a while. These meds are in the potassium family of drugs and really did nothing for my osteo arthritis. I am now on other meds.
Anyway, you should seek help for the inflammation since that will abate the pain and possibly slow down the Peyronies Disease symptom advancement. You should get started on some forum of treatment for Peyronies Disease as soon as possible. If there are no good qualified uros in Sweden that are experience with Peyronies Disease, you might try to find one on the main continent.
Again, welcome and read up on all the posts as time permits and you might find something that will help in your situation.
Old Man
Just want to note some things, especially to Iceman.
I think the combination of the VED and Pentox can make things worse in my opinion. Pentox makes red blood cells more flexible to reach even the smallest space. Imagine you use the VED or get a stronger errection. The fibrin will get trapped into even smaller areas where it wouldnt be if you dont take Pentox. This is just my theory and I really noticed that my pain level increased under Pentox use.
Pentox also often increases my heart beat (often >100 bpm) and stress levels that lead to heavy contraction of the errectile tissue that creates even more stress. I'm sure thats not good. Every contraction of the penis should be avoided to keep it oxigenated.
My last week was pure horror. I woke up in the night with 120 pulse, my penis contracted to the size (girthwise) of the palm. I began to panic. Lost 5kg in one week. Errections last week were impossible and I thought now I have 100% ED. Everyday my heart was beating like hell. My penis was heavily shrunken. In the VED tube it seemed that I lose up to 1cm everyday. Had 3cm under normal in the end under the SAME vacuum pressure! I stopped Pentox, Vitamin D and L-Arginin. Went to a doctor and got a sedative tablet (Insidon 50mg). The only things I still took at this point were Potaba 4x3g, Full spectrum vitamin E 1x400 per day, 1 Flaxseed oil (1000mg) capsule per day, 25mg zinc 1x per day, Iontophoresis 1-2x / day with Verapamil.
What happened after I took the tablet was unbelievable. My penis that was shrunken for at least 2 weeks now got fuller and bigger. In my flaccid state I really had a full penis again (fuller than at least the last 2 months), got my self esteem back immediately. That state continued to be the case since last 2 days. Not one contraction. Pain disappeared. Even in my left leg pain disappeared where I often get some diffuse associated pain when my penis gets attacked by peyronies/inflammation. This is very strange, no turtle effect since then.
My message is when you have pain, try to stop Pentox for a test. Take Flaxseed oil capsule or Omega 3-6-9. And most important get out of the stress, panic or depression! This is extremely important. You won't believe me until you see it yourself. If you stress yourself because your peyronies eats you up get a sedative tablet immediately and get down. I'm sure stress is the worst enemy and gets inflammation even higher and contracts the penis. It may be wise to stop VED for some days when in heavy pain, and do some basic stretches of the penis in the flaccid state to keep the penis somewhat stretched and prevent to trap further blood.
Some quick information about me:
Age 32, Peyronies Disease for 9 years developed slowly after a plop sound, Both sides of the penis completely scared (so penis straight again but shorter), plaque and scar everywhere, nearly no healthy tissue left, Erection length down from 18cm to 14cm. Thickness down from 5cm to 3.8cm. Took Potaba for last 5 years. Was not able to stop the progress of scaring but maybe slowed it down. Penis looks similar to turbodog75's in the yahoo Peyronies Disease board.
ths germike - OLDMAN or GEORGE999 - could you please comment on the thoughts of germike below - he seems to be thinking that VED usage and pentox combination is bad - well for the past 2 days Ive had no pain and this was after 4 days of immense pain - just cant work this out.....maybe its the MOBIC I am taking - one thing for SURE and thats STRESS = Peyronies Pain 110% - whenever I am stressed at work ( my job can be a bit stressful) my dick shrinks and lo n behold the inflammation goes wild - the liitle nobule becomes like a rock - even typing this is tensing things a bit - so I truely believe in what germike says - keep the stress down to reduce the pain...
Iceman, You are really hitting on something with your last post. Stress will ABSOLUTELY make your Peyronie's inflammation worse. Actually, its not the stress, its your abnormal physiological response to stress. This is all tied into hormones and other metabolic issues. I used to have this REALLY bad. Even now if I get really stressed out, my Peyronie's flares like a torch in the night. Only, now, unlike a few years ago, it quickly gets under control again. So what you are experiencing is typical. Several things have really helped me with this over time. They are really things like eliminating high glycemic carbs in my diet, getting lots of physical activity, and also the lights.
As for germike's comment, I really think we have to look to scientific data and not personal experience and speculation to sort these things out. Dr. Lue has invested a lot of time and effort in exploring the benefits of Pentoxifylline and has even written a paper on it. Dr. Lue is a highly respected expert on Peyronie's. When it comes to the efficacy and safety of Pentox, I would trust his judgement on that. Secondly, I, personally, have no experience regarding concurrent use of VED and Pentox. Perhaps Tim can comment on that combination. But I have no reason to believe it would not be safe. It would take some common sense in regard to the amount of vacuum one applies.
All of these approaches take months if not years to show benefit. In the meantime there will be setbacks. If we are doing nothing, we blame the setbacks on Peyronie's. If we are using VED and Pentox, we blame them on VED and Pentox. It can all become very confusing. That is why it is important to do the things we KNOW work or that we KNOW SHOULD work. From then on we can ignore the normal ups and downs of the syndrome and gradually things should get better. Of course if something really nasty or unexpected happens, we do need to pay attention to that and realize that people can have unusual reactions to these treatments and we need to be aware of that. But it is all to easy to bounce around from one thing to another and never accomplish anything. - George
Hello,
This is my first post here. I have read some of the posts and find this an excellent resource! Anyway, I hope I am posting in the right place, if not, my apologies.
My situation is embarrassing, but here goes. I believe I might have hurt myself through jelqing exercises which involve pulling-type movements on the penis to promote straightening and size gain. About one month ago, I started feeling a numbness at the base of the left side but I didn't think much of it. This feeling has now developed into a constant inflammation I feel in the flaccid state. It doesn't seem to be there when I am erect but returns promptly after the erection subsides. I haven't used my penis for anything except going to the bathroom for about one week now but still the inflammatory feeling persists. When I feel it, I compare the left(inflamed) side with the right side and both feel identical in shape but the left side feels harder. Not just in one spot, but rather up the whole length of the left side it feels slightly tougher than the right side. My erection appears unchanged, though I worry I am in the initial stage of Peyronie's and that this will get worse.
I should note that I have always had a slight curve to the left(hence the jelqing) since childhood. I believe I got this through an unorthodox masturbation method I'd adopted when discovering masturbation. Instead of the standard jerking motion, I used to rub it against my left leg. As a result, my flaccid state always points to the left but my erection only has a very slight curve. I am now 36 and this has been the case since perhaps the age of 12 or 13. I feel this curve has worsened recently, though it's hard to say as now I scrutinize it constantly because of anxiety and am not sure how bad it in fact was prior to trauma.
I have an appointment with my doctor but this is over a month away. I feel that if it is Peyronie's, I need to do something about it as soon as possible. I am not masturbating or having sex because I am scared of making it worse. I have recently started taking Vitamin E(200 IU three times a day). I am also trying to control my mind which at times gets really stressed over the situation, and I believe this only makes it worse. Does anybody have any suggestions? I know my case is not severe(yet), but it has nevertheless affected me significantly because of a fear of what is to come. I want to avoid any worsening of this condition if it is Peyronie's in the acute phase. Please give any advice, it would be greatly appreciated.
The only thing I would add until you see a urologist is Advil 2 or 3 times a day. This should help with the inflammation.
As far as sex goes. Use it to loose it. Unless it is painful do not stop having sex. IMHO.
Jackp
Welcome Jesmid,
Welcome to the forum!
Read the "Child Boards" and you will find a lot of helpful information. Hang in there - you will see that a lot of potential help is there.
You are smart to go to a urologist. Have you been seen by a good urologist? "Good" is subjective, but many of us need to search (long and hard) to find one willing to provide us supportive help.
In terms of dealing with things up front, don't make hasty decisions or choices. This is the time to sit back and to gather some information before acting. I say this with one exception - most of us feel that regular erections are good for erectile tissue (use it or lose it, they say, and it may be true for Peyronie's Disease). Therefore, getting better blood flow with Viagra (or other similar drugs) may help, as well as using the vacuum erection device (VED) which will pull fresh blood in (like an erection) as well as stretching out the tissue to prevent or fix contraction and worsening of the angle. Reading about the VED on the Child Boards may help you with this concept.
Welcome! Read up here and I hope this message helps!
Tim
How common is it to have new plaques develop during the first few months?
I was diagnosed about 3.5 months ago and had one bump. Now I just found another one next to the old one a few days ago and am very worried. Do people know if it is normal to develop a new plaque this early on?
I'm very much hoping for reassuring answers... :)
bluth - bumps develop all the time - they come they go - you are probably doing the right thing with the treatments - maybe talk to oldman about ved usage...
Hey Bluth,
The same thing happened to me. This is the inflammatory phase. You are best served by controlling your inflammation. This can be done with diet and supplements. Most notably, Vitamin E. Catch me off-line. I'll share what I did and what I wish I did to control it better.
Ted.
Ted:
Suggest that you post your information on the main forum as well so that any and all may have the benefit of what you experienced and what you did. We need to share information as we never know when it might be just the item that an individual needs.
Old Man
Hey Old Man,
Your right. O.K. I am going to give broad discussion points about nutrition and what I have discovered along the way. THIS IS NOT INTENDED TO SERVE AS MEDICAL ADVICE. IT IS JUST MY UNDERSTANDING FROM MY EXPERIENCE AND A PHARMA/SCIENCE/HOSPITAL BACKGROUND. CONSULT A PHYSICIAN!!! The biggest thing is that a great deal of inflammation in our bodies come as a result of free-radicals in our lives and in our diets. They come as a result of poor nutrition and the biggest offender, smoking. Alcohol has its impact as well. Essentially, in attacking any condition with inflammation, you need to adjust your diet to take out all of the free-radicals we pollute ourselves with that aid in causing inflammation. Soda is a good example. Get rid of it. When I worked in Phamra, I learned alot about different auto-immune disorders (especially with the skin) as being an over-expression of inflammation resulting in one condition or the other. Now some are not a result of free-radicals, but just a natural over-expression in our bodies. Think of Asthma. This is the inflammation of the lungs. What do we do for that? We give it steroids. Steroids just stop all cell activity. So good and bad activities get stopped by steroids and the results are all the issues associated steroids. Example, eczema is an auto-immune inflammatory condition that causes the skin to rash up. If you over-do it with steroids on the skin, you thin out the skin and cause greater issues. It can be very dangerous.
So I look at this as four fold:
1. Control the impact of free-radicals in your body by enhancing your diet. I don't believe you need to get all these fancy things that are out there... The drinks and the powders and such. You just need to get anti-oxidants into your diet. A handful of blue berries twice a day will be great. Get your leafy greens, eat your colored fruit. Eat fresh fruits and vegetables... Is that so hard? But most of us don't. Stop introducing free-radicals into your system. This comes from artificially processed foods, smoking and intense drinking. (Red wine is loaded with anti-oxidants. Don't stop that! Dark chocolates, certain types of pressed coffees, green tea are all loaded with anti-oxidants, enjoy them!) Stop doing drugs... for starters, it makes you a douche bag... seriously, the only ones that like the fact that you do drugs are douche bags and really, who cares what they think? Furthermore, drugs introduce all the free-radicals and inflammatory triggers that cause these problems.
2. Avoid inflammatory triggers. When we eat lots of processed sugars, we cause our insulin to spike up in ways that our evolution did not intend. The result? Inflammatory triggers in our pancrease shut down our ability to control the sugar. You can develop diabetes by the stress of these spikes. When we toss our body's chemistry out of whack, we cause a whole bunch of inflammatory triggers through-out our bodies. Eliminate all processed sugars. I try to even drink low sugar orange juice when I can find it. By doing this, we re-establish the balance our body actually wants. You will see, sweet foods are an addiction. You will go through a crash, but you will return a better man. Of course smoking, drugs etc all cause this as well. Make the effort, quit doing them all... Your penis will thank you. Your family will too... Take some time, listen to your body and see what causes inflammation. No joke, you will feel it in your Peyronie's plaque. I bet most of us will describe the fact that our plaques seem the smallest in the morning. We haven't started torturing our bodies yet and as such, there is no inflammatory actions going on yet. My condition would be worse after a bender of smoking and drinking... Just my observation. There are theories on keeping your body acidic and alkaline... I am not skilled in explaining this, but I get it... My diet promotes this type of balance.
3. Be careful of the physical impact you have on your penis. Masturbation. Use lube. You are in an inflammatory state. Think of what happens if you scratch at a bug bite. It gets worse. Same with your plaque. None of us are going to stop, but use lube. Even if its olive oil, especially during the inflammatory stage, don't go to town on your fella. This goes for sex as well. Work it in. If you are able to have sex then work lube into your routine. Most will describe a night in their life when they had sex and they felt like their penis was worn out afterwards. When you get past inflammation and things seem to settle in, its your call if you want to return to being a sexual gymnast.
4. Finally... supplements... I don't want to sound like a shill, but I am a believer in the philosophy put forward by Dr. Herazy. He offers sound, reasonable theories on why a man should take his approach. We have no solid scientific studies to support why we do anything for our condition and Dr. Herazy seems to have a handle on why he does what he does. For about a year, I took his products religiously. What I saw was a softening of the scar, a secesation of the inflammation and some improvement. I stopped taking it for a while to see if this was just natural progression and I now feel that my scars have hardened up a bit and my healing has not progressed. So I just re-ordered my old routine and I will be back in full action soon. He has several products he suggests for inflammation, most notably his brands of Vitamin E. He goes to great lengths to describe the different types of Vitamin-E available and why his brands are the right choice. I read the studies and I think he is on to something. I know I received benefit from Nattokinase as well... I used to suffer from cold-hands and I believe Nattokinase benefited me in that area by improving circulation. I'm not going to over-do-it with the supplements talk. Read his web-site and see if you agree.
Lastly, where inflammation is the issue... I would include a baby aspirin in my routine. It increases blood circulation and reduces inflammation. I didn't want to take so much that I created Cox-II issues in my GI, but I figured a couple of baby aspirins a day couldn't hurt.
That is my philosophy and I'm sticking to it. I will stay on this lifestyle change and health kick until I die. As for Peyronie's, I think this will be just what is required to maximize my success when I get my Xiaflex shots... Let's go FDA!!! get it done!
IN CONCLUSION: YOUR GOAL IS TO MINIMIZE THE PROGRESSION!!! IF YOUR CONDITION GOES NO FURTHER THAN WHAT YOU HAVE TODAY, YOU HAVE SUCCESS!!!
1. Reduce Free-Radicals in Your Body By Introducing Lots of Anti-Oxidants.
2. Reduce Inflammatory Triggers in Your Body By Controlling Your Diet.
3. Take it Easy on Your Fella. Lube Up. Physical trauma worsens localized inflammation. (think bug-bite.)
4. Take Certain Supplements to Control Your Inflammation ESPECIALLY During This Phase.
I wish I did ALL of this when my Peyronie's was just an annoying little lump off very little significance... (I was still the champ!)
I can get into how circulation of blood and lymph is an issue with Peyronie's as well, but that is a topic for another time.
Regards,
Ted
Hi Ted, I like your post. A few questions/comments:
As for alcohol, do you think drinking in moderation is still a problem if drinking vodka or gin & tonic type drinks or American beers? Or is the only safe alcohol red wine and possibly the more expensive, less processed beers? (note to readers: Ted didn't imply that any beer was better than another, this is my assumption)
How much is Dr. Herazy's most expensive plan? Isn't it like $500 per month? I just find it a bit hard to believe anyone who is pushing his customers for that much money. But not just that, I haven't heard any mention of Pentox from him (correct me if I'm missing something on that). It sounds to me like the one drug that makes the biggest impact is the one that he's not pushing because it's the one that he can't make any money off of since it's prescription. This is why I haven't given him any credibility in the past, but if you're convinced then that is something.
Hey Jackisback:
Dr. Herazy is not allowed to promote prescription drugs on his web-site. If Dr. Leu says that Pentox is good, then go for it. Dr. Herazy's thing is natural cures. All of the compounds he suggests are naturally available, non-pharmaceutical drugs. I would take them all together. As for the cost of the neutra-ceuticals, I haven't really thought about the cost in a bit. It is less than $500 a month. I was maybe spending that every 3 months or so for my routine. You can scale up to as much as you want, or you can take less. It is up to you.
As for alcohol. Excess of alcohol causes stress on your system. I suspect we have all experienced this. The long term effects of alcohol is obvious on the faces of serious alcoholics. Cyrosis of the liver comes as a result of the stress put on our liver to remove the toxins associated with drinking too much... Moderation... moderation... moderation... When I mentioned red-wine, I mentioned it because I wanted to illustrate that this drink in particular is very high in anti-oxidants... It is one of the theories as to why the French seem to smoke, eat tons of cheese and fatty foods and yet somehow manage to live to be 200 years old. ;-)
Hope that's helpful...
Well Ted, you know he has these plans on his website: small, medium, and large. It doesn't say how long one order of these plans will last you though. Do you happen to know? The largest plan says that it's $607, and I think that's too much. Also, he uses MSM. Many people have suggested a possible link between the MSM/Glucosamine mix and Peyronie's. I personally was using both when I first started having symptoms, and for a while after that, too. I might consider buying his ebook and see what I think.
Hey Jackisback,
How much does success cost? Basically he has a bunch of things in his large plan that I don't buy... I did my experiments. PABA, E500, E/400/400, Natto and Fibrozyme are my go-tos. You will figure out what your body likes and doesn't like. I don't take MSM. When I first started, I got a massive rash from everything I took. It could have been contact dermatitis from cleaning my basement, but I think it was the MSM, so I just laid off it. I haven't taken it since. Buy his book, but read his web-site as well. He does a good job explaining the "why" behind his therapies.
Regards,
Ted.
Is there any sort of medical agreement on how long it takes a plaque to "calcify"? Based upon my readings so far in the forums it seems that calcium is present in a higher level in plaque's, but I am a bit unclear as to when the plaque calcify or become bonelike.
Does this happen in all peyronie's cases? Is there a general timeline for the process?
hm... I am wondering what is the difference between peyronies and corporal fibrosis. I found that a peyronies plaque can grow into the corpora cavernosa as well... Is corporal fibrosis worse than peyronies? How can I find out if what I have is peyronies or corporal fibrosis?
Corporal Fibrosis is worse than peyronies IHMO.
In my case peyronies from 1995. The curve corrected in about 12-18 months but the side effect was I lost almost 1.5 inches. In 1995 there was nothing the doctors could do.
Corporal Fibrosis is another story. It happens from lack of erections and/or sticking a needle in the penis with trimix or PGE1 for erections. In my case the corporal fibrosis was also a product of venous leakage. When the venous leakage got so bad that I could not maintain an erection I tried the shots. That was a big mistake because the shots made the corporal fibrosis worse.
Loss of night time erections from ED and venous leakage also contributed to corporal fibrosis.
My wife and I had successful intercourse for years with peyronies only. After the other problems developed I was 100% impotent and used the VED.
I started the VED exercise that was recommended by Old Man a year ago last October and gained back almost 1/2 of my penile loss.
DO NOT EVER STICK A NEEDLE IN YOUR PENIS!! For erections.
With all my problems I opted for an implant. That was 4 weeks ago and waiting another 2 weeks to get it activated. Doctor said that the VED exercise helped me gain back all the size I could get because of the peyronies scar on top of my penis. He also said keep the VED exercise up until about 2 days before surgery for the best outcome. So far I am well satisfied with the implant results.
The best way to find out what you have is go to a doctor that is a Male Sexual Function specialist. General Practice uro's do not have all the skills you need.
Hope this helps.
Jackp
Bluth,
Regarding your question:
Is there any sort of medical agreement on how long it takes a plaque to "calcify"?
In my case, I had a dopplar ultrasound 7 months after the first onset of Peyronies. The doctor said I as just beginning to show very early signs of calcification. My understanding is that full calcification can occur 18-24 months after first onset. Maybe others will have better information on this.
thanks jackp. is it possible to have corporal fibrosis after just four months of peyronies? I have the impression to feel a lump that does not seem to be located on the tunica, but deeper inside my penis. do I have to worry about corporal fibrosis in this case?
Another question: I can still get erections (even if they are softer than before) but my glans is not as sensitive to stimulation as before the onset of peyronies. Do you think that this loss of feeling is permanent? Is it possible to regain it when the inflammatory phase is over (if this will happen at all...)? Any experiences?
What are the actual consequences of calcification in terms of receiving treatment? Does it effectively rule out improvement and/or recovery via the various currently available treatments (VED, traction, oral treatments etc). How about future treatments such as xiaflex? could be dissolve calcified areas?
Also, do you view treatments started early -pre-calcification- such as pentox + other other treatments, VED) as being able to greatly reduce/stop calcification in many or most cases?
newguy
In 1995 when my peyronies first hit I went to my local urologist. He gave me a Rx for Potaba and told me to take 400IU of Vitamin E three times a day.
Later that year I had to have a "roto rooter" for enlarged prostate and I asked him while in the hospital could he do anything else about peyronies. He said he could not.
In 1998 I was one of the first to get a Rx for Viagra. Did not work well. Later after complaining of ED he did a Color Doppler and said I had venous leakage. He offered me trimix injections (not FDA approved). After not being able to get any straight answers as to where to get trimix (he wanted to sell it to me out of his office at a BIG markup.)
I switched urologist and he gave me a Rx for trimix and the name of a local pharmacy that could compound it. Little to no help. After several changes to the highest formula and 10 units still little to no help. He scheduled an implant.
Just before the implant I had chest pains and had to have stents placed in my heart. Had to delay the implant for 1 year. I asked the uro what could I do for sex and he Rx-ed a VED and I had it fit in his office.
Did not get the proper instructions (or I did not read them properly) and proceded to pump as much as I could stand. I caused a bruise that took weeks to heal. Then I only used the VED and constriction ring for sex.
10/06 During implant surgery the doctor punctured my urethra and aborted the procedure. Wanted me to wait 6 months before retrying.
I started to research and found this site. Got in touch with Old Man and he put me on to the proper exercise for the VED I have.
Started looking for a surgeon here that I had confidence in that could do a successful implant. No one here with a population of around 1 million. I was Finlay refereed to Vanderbilt.
After more health problems I had the implant procedure 10/23/08. Doctor said that he had only seen 1 other patient with urethra puncture and he had never do that. They answered my questions before I could ask ad did a great job.
As for all the new drug and injections in trial I hope they work. At 66 and a 13 year struggle with Peyronies, Ed, Venous Leakage, and corporal fibrosis I did not feel I had the time to wait.
Yes there was some loss of feelings in the head because of peyronies. Also I have back problems and urologist said I could be related to that. I had back surgery on L4-L5 in January. I have a follow up appointment with the back doctor in April and he said if I was still having problems he could run a nerve test.
The only thing after my penis curve corrected and I lost about 1.5 inches that has helped is the VED and the exercise Old Man gave me. In about a year of VED exercise I gained back about 1/2 of peyronies loss. Doctor said that was all I could get because of the peyronies scar on top of my penis.
The only thing that worked for me was the proper use of the VED. I highly recommend you start Old Man's exercise as soon as possible.
Jackp
My Peyronies Disease progresses without any real sign of a stop. Both sides of the penis are scarred after 9 years into this disease.
Got my blood levels of testosterone checked today => 2,7ng/ml at age 32!
I think there must be a link to low testosterone for the ones who get progressively worse over time.
gerMike
I absolutely agree regarding the testosterone. I also think, though, that other conditions can lead to gradual progression as well.
Tim
Hi gerMike
I just had my testosterone tested. My doc told me I had the levels of an 80 year old man, my levels were really low, I'm 38....Have you been put on any medication for that?
I'm one year into this disease and so far it shows no signs of slowing down. I'm still experiencing periods of pain and the scarring which started across the top of my penis has now spread to the left side - of course so begins the bend on that side. I was only dealing with a worsening upwards bend - now its changing quite rapidly and bending fast - just over this past couple of days. I was hoping that things would start to stabilize a little soon....But it doesn't look as though that's going to happen. Your post only made me feel even more sure of that! :-\
bent 70:
have you tried using a VED and are you on any oral meds; even pentox?? - I mean what are you doing to try to stop this - I am only saying this because my pain seems to have stopped after 1 year - the last 2 weeks have been bliss - no pain at all - i am on all the oral meds written up here plus ved
Hi Iceman
Unfortunately for the first 9 months or so of dealing with this I was under the misguided belief that it was best to watch and wait whilst taking Vit E. My Dad also has Peyronies as does his brother, my uncle had a series of verapamil injections that cured his Peyronies - he says completely, but after doing some reading here I went off that idea. When I spoke to Dad about it he mentioned that he was told by his urologist that there was nothing really that he could do except take Vit E and hope for the best.
About 6 weeks ago I discovered this place and read up like crazy. I'm still taking Vit E and have been taking L-Arginine for the last 5 weeks. The first urologist I saw didn't know much about Pentox being used for Peyronies, so I'm making an appt with another (made the mistake of seeing the same one my Dad went to) After all the reading I've done here I don't pin too many hopes on being helped much by seeing a urologist - I'm only going on the hope that he'll prescribe Pentox.
Well had my meeting with the uro today. Most disheartening. He looked at my photo and told me my case was not very bad at all and that until such time as severe enough "waisting" occurs (which he deemed unlikely) not much could or should be done. If ever intercourse becomes a problem then and only then would a surgical approach be considered. I was flabbergasted and explained my concern about not addressing what seems to be an active situation! I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much but suggested I research Wayne Hellstrom and traction because none of those devices are available in Canada. I have searched the site and found no reference to another urologist in the Toronto area, only to the what now seems defunct ESWT clinic. Anybody have some names for Toronto Ontario Canada or am I going to have to go stateside (Detroit, Buffalo etc) in search of a proactive approach?
Kind regards to all
Mike
Quote from: mikesb on November 03, 2008, 10:26:16 AM
Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.
The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".
Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.
These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.
I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.
Thank you all here for what you do, a great service to man.
Regards
Mike
Quote from: mikesb on November 25, 2008, 07:36:32 PM
I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much...
Mike,
I think this underscores the need for any new patient to assume this may be the response of an unproven urologist. Based on that assumption you must go loaded for bear as they say (in these parts). You must be prepared with studies, and protocols of leading urologists. You may even first have to establish the credentials of a urologist then introduce his protocol. Granted, this also may not be enough but it is a patient's best shot.
Hawk,
I totally agree. The thing is that many of these well established urologists are good for more common male urological issues. But they don't know jack (sorry jack) about Peyronies, but they either don't know or don't stay up on current Peyronies Disease therapies.
""We have experimentally manipulated healing adult wounds by neutralizing PDGF, neutralizing TGFbeta1 and TGFbeta2 or adding exogenous TGFbeta3. These experiments result in scar-free wound healing in the adult. Such experiments have allowed the identification of therapeutic targets to which we have developed novel pharmaceutical molecules, which markedly improve or completely prevent scarring during adult wound healing in experimental animals. Some of these new drugs have successfully completed safety and other studies, such that they have entered human clinical trials with approval from the appropriate regulatory authorities.
Initial trials involve application of the drug or placebo in a double-blind randomized design, to experimental incision or punch biopsy wounds under the arms of human volunteers. Based on encouraging results from such human volunteer studies, the lead drugs have now entered human patient-based trials e.g. in skin graft donor sites.""
Read the above and know that my peyronies is healing because I did what you "lurkers" did not do. I got the attention that my peyronies needs by following the aggressive lead that women made with breast cancer. Breast cancer gets all kinds of attention because of aggressive marketing and awareness campaigns. And that is what I did. I knocked on doors, I went and visited doctors, I got parking tickets, I mailed letters, made phone calls. In short lurkers, I got out in the real world! You lurkers are content to sit in front of you computer and complain to your support group that your dick doesn't work. Well that's not good enough lurkers. You got to get yourselves heard in the real world.
How is the treatment working for me? Great! Where am I getting the treatment? Sorry lurkers, since you refuse to get off your computers and get out in the real world I am not going to help you.
I will leave you with this quote; "If you want to play ball, there comes a time when you have to leave the clubhouse and get out on the field."
Quote from: jxyz on November 25, 2008, 09:25:20 PMHow is the treatment working for me? Great!
Congratulations jxyz! I am glad for you. I am delighted to hear that you have found and are benefiting from the ultimate solution. Thank you so much for
"sharing"! Now all the rest of us can go back to our
"lurking".- George
Dear Jxyz,
You are of course writing about the experimental work done by Ferguson and the exact beginning of the quote (actually you left out the beginning) says: "We have experimentally manipulated healing adult wounds in mice, rats and pigs to mimic the scar-free embryonic profile, e.g. neutralizing PDGF, neutralizing TGFβ1 and TGFβ2 or adding exogenous TGFβ3."
The abstract (I highly doubt that you have read the original paper) states: "This means that scarring may no longer be an inevitable consequence of modern injury or surgery and that a completely new pharmaceutical approach to the prevention of human scarring is now possible."
It does not state (this was written in 2004) that is is available, just that it is possible; the paper represented a proof of principle. The author did not follow up this work with more peer reviewed papers (or very many) and instead opted to go for it financially by co-founding Renovo, which markets scar creams that work moderately well, although they do not lead to "scar-free" healing.
This has been discussed here before - perhaps you even found the link to this work here. There is no FDA approved injectable available here or in the UK.
Your claim to improvement sounds like BS to me. Your claims to superiority are ill-founded on an erroneous belief that you are the only one who is "doing something" instead of just "lurking". One thing we do here - in fact one of the most important things we do here - is to share what we know and have learned. Your selfish (and probably BS) claims of a cure that you are going to keep secret stand in contrast to your calls to action and duty and solidarity.
And of course, I wonder which "miracle" did it for you:
1) the cialis from Canada you asked about??? ( https://www.peyroniesforum.net/index.php/topic,84.msg14371.html#msg14371 )
2) The TENS unit you asked about??? ( https://www.peyroniesforum.net/index.php/topic,26.msg14477.html#msg14477 )
3) the Perfenidone from Dr. Levine you asked about and vowed to get??? ( https://www.peyroniesforum.net/index.php/topic,36.msg14950.html#msg14950 )
4) Or the Renovo product???
I personally cannot wait to hear!
Oh, and sorry to hear about the parking tickets.
Tim
hi jxyz -
what meds have you taken and can you please let me know - it would be much appreciated form me ...and all others PLEASE!!!
Iceman:
Forget asking about the meds and/or drugs, he has stated that we only lurk and do nothing. And, he says he will keep it to himself and not share with others.
Sorry to relate this, but that sounds like the truth about his "research". Now I can go back to just lurking again!!
Old Man
jxyz - It's understandable that you are very troubled by peyronie's (most of us are), but this kind of post is not helpful. Making such claims does not help you and certainly does not help others.
Ban the jerk. What a ridiculous post. Claiming he has found a cure for his Peyronie's and then refusing to share it with the rest of us because we are not doing anything to better our cause... Whatever.
SO WHAT IS THE BENEFIT OF SUCH A POST!!!!!!!!!!!!!!!
DO YOU THINK YOU ARE HELPING OTHERS THIS WAY!!!
I REALLY FEEL SORRY FOR YOU.
GOD BLESS YOU
I realize that Hawk and was somewhat loaded for bear however as you can appreciate, here in Canada one of the cons of our social medicare system is that the doctors (and these days urologists) are extremely busy and will not give you the time to engage in much of a discussion. It is my hope though, that in a metropolitan area as large as Toronto, there are/is that unique individual that is already well versed and current and totally into a proactive approach. It is finding him/her that is the buggar. The search goes on!!! I have asked both my own and my wife's GP for any help they can offer in that regard. I will add that (pardon the pun) the "Male Health Clinics" (not covered by medicare) will not touch Peyronie's with a ten foot pole, they are only into ED and PE etc....
Quote from: Hawk on November 25, 2008, 07:45:38 PM
Quote from: mikesb on November 25, 2008, 07:36:32 PM
I threw out all of the oral meds, alternate treatments, Lariche etc etc and all he would say was not enough clinical proof to consider those options! Veramapil injections, out of the question, not recommended. Topical? Useless. Pentox, not strong enough clinical evidence and on and on. I really need a referal to another urologist for a second opinion, someone who believes in a proactive approach to this disease in the active stage. When I asked his opinion about VED or traction for recovery of lost length or girth and in VED's case, to promote getting ample blood supply to the glans etc, he said the VED would not help much...
Mike,
I think this underscores the need for any new patient to assume this may be the response of an unproven urologist. Based on that assumption you must go loaded for bear as they say (in these parts). You must be prepared with studies, and protocols of leading urologists. You may even first have to establish the credentials of a urologist then introduce his protocol. Granted, this also may not be enough but it is a patient's best shot.
Quote from: bent70 on November 24, 2008, 11:59:25 PM
Hi gerMike
I just had my testosterone tested. My doc told me I had the levels of an 80 year old man, my levels were really low, I'm 38....Have you been put on any medication for that?
I'm one year into this disease and so far it shows no signs of slowing down. I'm still experiencing periods of pain and the scarring which started across the top of my penis has now spread to the left side - of course so begins the bend on that side. I was only dealing with a worsening upwards bend - now its changing quite rapidly and bending fast - just over this past couple of days. I was hoping that things would start to stabilize a little soon....But it doesn't look as though that's going to happen. Your post only made me feel even more sure of that! :-\
My peyronies started the same. First a small nodule on the top that grew to a band like plaque. Then it spreaded to one small nodule into the left side and one into the right. For unknown reason it spreaded first on the right side and scarred it completely from top to bottom WITHOUT any pain in just about 6 months (I think I took soya isoflavone in that time, possible estrogen link?). Then years of no progression of the left side, left side was still ok and good filled with blood. But recently, the left side got worse and it gets the same appearance like my right side, I loose girth and some length again. When I test my shaft with my finger I feel that the whole tunica tissue is more thick than before and rougher (I guess many small plaque points). My problem is that I still can get strong errections sometimes when I'm good stimulated and I guess that makes my situation worse. I take big care to not overpump when doing VED excercises but I have in no way control about the natural pressure in the penis when it comes to sex. I can nearly count the days after I did sex when the pain will start again. My theory is that while having a natural errection more blood leaks into the tunica with all the bad inflammation stuff it brings.
I will target my testosterone levels in my daily regime. My doc subscribed me Testogel but I don't want to apply external Testosterone yet. I ordered "6 OXO" instead. This does also eliminate estrogen in the blood (which I have too much too) and raises Testosterone by up to 188%. This will be my first try. Everybody with low testosterone should definitely do something against it. No nocturnal errections make things worse too imo and there are reports that low testos is really bad in the long term for overall health (see here http://men.webmd.com/news/20071127/low-testosterone-early-death or here http://abcnews.go.com/Health/ActiveAging/Story?id=3247773&page=1)
"I'll bet you that within a month I will be taking Pirfenidone prescribed by Dr. Levine. I will not take no for a answer! I will not sit by quietly"
I went back and read my second to last post that I made here five months ago. The above quote I pulled out of my post. I was a little over ambitious. What I said would take me "one month" actually took me five months. And no I am not involved in the government trials for pirfenidone. Although my trip to N.Y. for the pirfenidone trials was not entirely unsuccessful. I had made a contact from the trials and I used that contact later on. And while in N.Y. I also got to participate in the hMaxi-K Gene trials at the second highest dosage given to participants. My fiance did not accompany me to N.Y. So how did I participate in the trial when a mans six month or longer sex partner has to be present to answer questions in order to participate? I have to bite my tongue here, I don't want to say to much. But damn I made it happen.
I remember when I was in my twenties and I use to go out with my buddies to a dance club. And I would go home with a girl and they didn't. My buddies asked me how did I get so lucky. I would tell them, "You got to make it happen man. Nothings going to happen if you don't make it happen."
So don't waist your time with an ionto machine like Dr. tim did. Don't waist your time following george999 and his rotation of supplements that he swears by one month and discontinues the next month.
I have helped pave the way for you guys. Because of my efforts I have heightened the awareness of those involved with fibrosis treatments that are also applicable to peyronies. I've already made it happen for me so I no longer need this forum. I don't feel sorry for leaving you guys here because I've already helped you. Now (You) have got to go make it happen for yourselves.
What a [deleted].
Learn how to spell. You post [deleted] gathered from some web site and brag of improvement. [deleted]
I sincerely hope that you mean it when you state that you no longer need this forum.
{You know, it does feel better to delete the ad hominem attacks!}
Dear tim468,
Your disagreeable countenance and ad hominem attacks are uncommonly petty.
"When the debate is lost, slander becomes the tool of the loser." Socrates
"Be the change you want to see in the world" - Gandhi
jxyz - whats perfenidone??? - what are you actually taking - please answer....
jxyz,
are you suddenly healed from peyronies or did the pain and inflammation just stop? Is your penis relaxed again instead contracted all the time?
Please help out with your new knowledge according to your earlier words:
Quote
Because of the incredible suffering I am going through I have learned to become a kinder more compassionate person. The Greek author Aeschylus, one of my favorintes, wrote of the struggle to reconcile the existence of God in a world filled with suffering. I believe in making this world a kinder gentler world as the greeks wrote of. But I have never believed in a god.
You know what a hell this disease is, so please share some information what really helped you and how.
jxyz:
Petty, petty!!! Instead of spouting off a bunch of jargon that most on this forum won't understand, post something worth while and share what you know. This forum is about helping others with any knowledge that is available to anyone. Telling Tim off will do you no good, believe me because he is just light years ahead of your seemingly low knowledge of Peyronies Disease. In fact telling any of us off will do you no good, so cool it.
Many of us on here have been through more of life than you and have experience way above your head. The disease has been around for several hundreds of years and a lot of great doctors have tried to find something that helps, but so far the solution has eluded them.
I just don't think that you have found the "miracle cure" overnight. If you have, why are you so reluctant to post your formula for all to read and get some help. Why be so selfish and inconsiderate of your fellow man???
If you mean what you say about not needing this forum, why don't you take a cue from the cowboys and "ride off into the sunset"?
At my age, I don't need to listen to such trivial statements from someone apparently much younger than myself.
Old Man
PS: In case you have not noticed, Tim is a Global Moderator of this forum.
jxyz, I don't know what set you off, but since you seem to be quote driven...
"Every man is a damn fool for at least five minutes every day; wisdom consists in not exceeding the limit."
Elbert Hubbard
Quote from: Iceman on November 27, 2008, 03:51:22 AM
jxyz - whats perfenidone??? - what are you actually taking - please answer....
Perfenidone is a "better" Pentoxifylline if you will. It is targeted at the same conditions and seems to have a similar, but more powerful, effect. It is still experimental. It is in trials now for Idiopathic Pulmonary Fibrosis and is not yet approved. Right now they are offering it for compassionate use to IPF sufferers who will die without it. Peyronies is not a deadly disease and those of us with Peyronies can well afford to wait until it is approved by the FDA within the next few years. Aside from that, its long term side effects are still not completely understood. AND, it is extremely expensive even if it can be procured. If jxyz can get it, bully for him. Personally, I will pass on these kinds of things until we know more about them. Most of us around here have made our share of mistakes, many of them rather publicly, and are more than willing to own up to them. But jxyz seems to have all the answers and seems determined to try to make everyone dance to his tune. Hopefully what ever he is "on" to will be helpful to him, but it often doesn't work out that way with arrogant, self centered people. Usually they get so tangled in their own hubris and pride that they collapse into a pile of dung in fairly short order. But we will see how things turn out with this. - George
This supposed Socrates quote was never uttered by him. The real Gandhi quote is "You must be the change you want to see in the world."
A better quote (for you) would be "The only true wisdom is in knowing you know nothing."
That was by Socrates, by the way.
I suspect that poor self esteem, masked by bravado and braggadocio, underlies this behavior. Perhaps his father never told him he was proud of him. I don't know.
And cured as he is, I suppose he will soon be leaving. But as for dialog, I have a three strikes rule. If someone persistently flames others (or me), or cannot make a point, or cannot get a point, then I give up on him after three tries at communication.
For this knucklehead, I am calling three strikes now.
Tim
Congratulations, jxyz. I'm surprised you aren't fully cured already! I'm surprised the cure didn't add 6 inches onto your penis! I mean, you proved your proactiveness by telling us how easy it's always been for you to pick up ladies when your friends struck out at the bar. I'm sure they were perfect 10's, too!
I know a friend who goes out with us and always has a STORY to tell about the girls he's "conquered" -- but he always manages to meet them when we've left the club early or when his buddies are otherwise not around to witness it. Funny - that sounds a lot like your peyronie's cure. By that I mean a complete and arrogant lie.
Listen, chump. You don't impress anyone here. If you have something real to say, be a MAN and say it, since you want to run around telling us how manly you are. If you're a liar there's no helping you, but if there is an actual answer - and you don't contribute to the community you came crying to (and was there to support you) when you got Peyronies Disease - then you're a coward.
I'm feeling much better. I don't know if the treatment I sought out is what worked for me or, like I said, when i was in my 20's I developed p.d. but it went away and stayed away for twenty two years. Now it is going away again. So strange how this snuck up on me so fast and now it has been healing so fast.
I realize I don't need this community any longer. I realize that there are mostly sad men lurking here and know one who goes out in the real world where the treatments are. Lots of bi+
I am healing because I took the innitiative and you bi+
Big reminder to you p.d. patients s out there. 1) Don't be a lurker and suffer in silence. 2) when you read a report about fibrosis on-line Email the doctor and clinic involved in the research. 3) mail call and visit the names of the doctors and clinics you read about on-line.
I have laid out a good path for you. Now get the hell out there and stop lurking baby!
Bye bye.
Dude, you're weird. You have this irrational complex that everyone here is a "lurker," unwilling to get off their butts and get out in the real world to find treatment. There are people here who have flown to Chicago to visit Dr. Levine (I've had a phone consult with him, myself), flown to San Fran to see Dr. Lieu (one guy flew from Australia), and guys who have used VEDs, Ionto, heat therapy, traction, Thacker's Formula, witch doctors, faith healers and a couple treatments involving the ear wax of vestile virgins. Don't say these guys are lurkers - they're grasping for straws on a disease that's perplexed medical science for centuries.
You're either a BS artist with nothing better to do than spend time trolling forums for excitement ... or someone who actually got some results but is too cruel to share them. I'm not sure which is worse, but I'm not gonna waste any more time thinking about it. The two minutes it took me to type this is more attention than a blow hard like you deserves of my life.
I mainly just wanted an opportunity to call you a blow hard.
Nemo
Basically, he thinks that by being abusive and vocal he can get the attention he craves. But he is not satisfied with that, he wants all of us to be abusive and vocal as well so that he can get even more attention. The problem is, we already have some very capable leadership around here in the form of forum moderators that have a proven approach to leading this community. Few, if any, of us are attracted to his trash and burn, hyper-activist approach. This is causing him to be irritated and so he just has to throw in a few more disparaging comments. Some of his comments make me wonder whether he even has Peyronies Disease, or whether it is just a figment of his imagination. In any case, if nobody around here takes him seriously, I can't imagine a doc or researcher taking him seriously. I could imagine him demanding Perfenidone and ending up with a completely different med that more appropriately addresses his problem and being told by the doc that it is Perfenidone. But who cares? He has certainly more than burned his bridges around here. Hopefully he will own up to the fact that he has a problem with something other than his Penis and get some help for it. - George
jxyz - if i am a lurker then why did i fly across the pacific spend 1 week in san fran for a 30 min appointment with dr lue???
Quote from: George999 on December 01, 2008, 11:56:15 PM
Basically, he thinks that by being abusive and vocal he can get the attention he craves. But he is not satisfied with that, he wants all of us to be abusive and vocal as well so that he can get even more attention...
George is dead on. We have had a rash of bizarre posts in the last week. Actually it has been two posters which is a rash for us. We have a rule of no personal attacks. In a nutshell, that is mostly any name calling. We can aggressively question or confront data and ideas here. We discuss controversial issues with full freedom. We can call an idea stupid if we are at a loss for words, but we do not call people stupid or any generally derogatory names. For one thing, we never know who may be a psychologically troubled person who is or should be a mental patient. We have no desire to taunt such a person. In addition, we don't want to give license to members coming back to respond to our responses. That destroys the forum we have built.
As moderators and Administrators we do not run this forum like some. We do not use privilege to attack members then ban them when they step up the attacks. We are bound by the same rules as others.
When I see some irrational post and one of our solid members respond with a good tongue lashing, I often share those same sentiments. The forum is not the place to express that however. I am not into the concept of favoring some members over others when it comes to enforcing our rules. I cannot give privilege to those I happen to agree with.
In short: No personal attacks, even in response to such attacks. We send a Personal Message to all such abusers and warn them. Our patience is very limited and we deal with those that do not head our warnings.
Feel free to aggressively address the issues of any post just refrain from personal attacks.
Regards,
Hawk
Administrator
Well said, Hawk. I apologize for name calling. My goat was got, albeit briefly, and I just felt like calling a spade a spade. But this forum is very well run and inhabited almost exclusivley by gentlemen, so again, I apologize for the childishness.
Nemo
Dear Hawk
I do appreciate you all for being such a wise and great group of people.
Very true we don't know what's going on with this guy. and we shouldn't follow his steps .again we don't know who is he.
GOD BLESS YOU ALL
This is indeed a strange disease. Last week I was almost ready to post that my disease was close to being cured. Things felt good down there and the plaque seemed much less. Now over night the plaque has come back with a vengence and my penise is taking on that hard dead feeling I have heard many of you speak of. Oh well.
Ok well I didn't know where to post this so this seems about right. Do anyone of you think masterbation is bad for your peyronies disease? Everytime I masterbate which was only once in the past 3 weeks because of pain I noticed it got worse. Do any of you have this same problem? I know a lot of you in here say you can't get peyronies disease from masterbation but I am 100% positive I got my disease from unhealthy masterbation. In other words I got it from injury. I am having so many issues that I am starting to think I have something else other then peyronies disease. Maybe a urethral stricture I have no idea. I am seeing my uro today at 4 30 wish me luck!
Despise,
Injury can trigger Peyronies Disease but for true Peyronies Disease progression there are likely many factors that have to be present.
An injury from any source can be the trigger, so abnormal masturbation could trigger Peyronies Disease. I guess it is like bungee jumping. Normal bungee jumping is not associated with Peyronies Disease but penis bungee jumping probably could be. ;)
hornman
sorry to read that! :-[ I hope your new problems will go away as quick as they came! You have already experienced improvement once so obviously your body is able to fight against this mess! Don't give up!!! I wish you all the best!!!
despise
I am in a similar situation. Sometimes I have the feeling that masturbation helps and sometimes it seems to worsen things. I think you should "listen" to what your body "tells" you. If you have the impression that masturbation is not good for you at the moment stop it for a week or two. Then try again. I have had peyronies for five months now and there were periods when my penis was sore for two or three days after masturbation even after longer breaks of 1-2 weeks. Now things are much better. I can masturbate 2-3 times a week without having problems and I have the impression that the situation is still improving. :) I hope I am right!!!
good luck!
Yeah your right! What I failed to do was stop the masterbation in time for my penis to recover. Obviously I was having a lot of phychological issues. Did I spell that right? haha. I really can get mad at myself sometimes and I think that had a huge part in it. Masterbating to the point where it can't recover was a very unfortunate thing to go through! Now I am simply paying the price. At lease I have learned my lesson and now am ready to move on. Ok well I have been kinda freaking out laying on my bed cause my penis is always stuck down on my testicles. This is what leads me to believe I might have something wrong with my urethra. It seems as if my urethra is like broken! No strength what so ever. I am young and still have some wet dreams but they are very unpleasent now. I felt pain in my urethra and somewhere near my bladder. Maybe far up the urethra? This happened this morning and woke me up. I have also been taking hot baths to try to relax which is actually doing the oposite =(. In the hot water my penis feels broken and curls up to the left. Has anyone with downward and left curvature experienced these things? I really really think something is wrong with my urethra too and I think my urologist doesn't think so because im only 17 and its probably very rare. He told my father doing the test where they stick a little microscope up your urethra might cause more damage. So he scheduled the next appointment for 2 months! I need help guys! Do you think I just have peyronies disease? Or do you also think there is a huge possibility I have a urethral stricture or something else? I noticed that one time I masterbated the past 3 weeks that I couldn't last a healthy errection without climaxing. Basically right when I gain a full erection im ready to ejaculate. Anyone have these issues with peyronies disease? Sorry for all the questions guys im just freaking out! Thank you.
Despise,
I've been on vacation a week so just now catching up on posts on this forum. I went back and read all your posts. I read where the USC uro diagnosed or thinks you have Peyronies. From your posts I'm really wondering if you have different problems. Your description of masterbating 5 times one day and something happening (your reference to a ruptured blood vessel) leads me to believe that maybe you caused some physical damage. I guess I'm just trying to point out that you might have other issues (Peronnies or not). Could be a ruptured tunica, damaged cavernosa, etc. Also your symptoms of difficulty and pain while urinating are important. These aren't directly associated with Peyronies either.
If I were you I would push your uro to get a penile ultrasound to see if there is proper blood flow or other damage. I believe there is also a test for Prostatitis (sp?). Taking Payronies drugs won't help if you have something else going on.
I would really be interested in Tim's or Old Man's thoughts on this one.
Les
Thank you so much!!! Oh my god someone that thinks I have something other then peyronies like me!! Ok I have to wait 2 months damnit!!!! What would you do if you were me? I need to do something because I am so beyond depressed and stressed out. Seriously I can't take this anymore I need some help. I think I will talk to healthy kids and push for another urologist.
Some of the symptoms suggest prostatitis or epididimytis - but neither of those are incompatible with having Peyronie's Disease too.
Burning sensations with urination mandate evaluation, and sooner than in three months.
Tim
Tim,
Epididimytis or prostatitis would be a coincidence, correct? I don't think either of these are directly linked with Peyronies.
lwillisjr:
Neither of those ailments relate to Peyronies Disease. However, severe Peyronies Disease could aggravate them. The added pressure of the curve on the urethra and corporal chambers could possible cause a pull on the testicles or the bladder.
I had an epididymis infection that resulted in its removal on one of my testicles. After the surgery, the pain of the gland and some of the pain of Peyronies Disease left.
As I said, there is not a direct link as far as I know between those ailments and Peyronies Disease.
Old Man
Guys, he has already had his urine checked at least once I believe and they didn't find anything. But, of course, those urine tests for infections are notoriously vague. A subliminal infection can easily escape detection. As for a prostate infection, it sure doesn't sound like that to me, but who knows.
My suspicion is that it is just another aspect of systemic inflammation. That is the Peyronies connection. If your tunica is inflamed for no good reason, who knows what else might be inflamed for the same no good reason. I had burning issues for years, from long before I had the Peyronies, and the uros couldn't find any evidence of infection. Of course, I had a stricture. They gave me antibiotics anyway until I got allergic to them. After the stricture got fixed permanently, I still had burning. I just knew what it was and got urine tests periodically and put up with it. I never really knew whether I had an infection or not. The thing that eventually helped me a whole lot and even knocked out the infections was the cranberry extract, garlic, vitamin c and forskolin combination. But now that I am on the vitamin d / pentox combination, the burning is gone, really gone for the first time in memory (at age 61). My point is that this whole systemic inflammation syndrome can cause crazy things. And as Old Man points out, localized infection somewhere else can either reflect or actually inflame adjacent tissues. So sure, rule out as much other stuff as possible, but as far as using a scope on him, he had better have a good uro handle that because it is not without risks. I am also not sure what the potential benefit would be when his urine flow seems to be ok. Those are my thoughts. But I would sure attack the inflammation and try to find a doc to get the vitamin d issue investigated. - George
infections are not causative for Peyronies disease to my knowlege.
Tim
Tim, I would certainly agree that infections do not cause Peyronies. That was not what I was intending to say. Sorry if I gave that impression. I also do not believe that Peyronies can cause infections. But I do believe that infections can elevate the level of systemic inflammation and thus aggravate Peyronies, and that Peyronies itself can elevate systemic inflammation which would not in and of itself increase the risk for infections. - George
I appreciate everyones concern and help! :) Ok im not sure what it is yet. We are trying to push my urologist to give the test where they put the camera up your urethra. I have had 2 urine samples and they said no infections. One major reason why I think I have this is because of my wet dreams. Before about 2 to 3 years ago I had a wet dream. It was so realistic it lasted 5 mins on some girl giving me oral and then I climaxed. Last night I was half asleep and I thought of this girl I like. I got a errection and I climaxed just like that. It was painful in the penis somewhat but also deep down. Does anyone know if this is a urethral stricture symptom? I have had one a couple of night before that one too and it was unpleasent as well very painful deep down not in the penis maybe far down the urethra? I haven't gotten a regular errection in 4 weeks. I was with my ex girlfriend. We started kissing and my errection was pitiful. This is way unormal for a 17 year old male! Ive had to many of these painful wet dreams and its simply driving me nuts. I know im not ready for sexual activity. I have had to many chances to have a beautiful girlfriend this year but this is ruining it! I met a girl and I told her I am a virgin which is true. I told her my problem and she was fine with it. What I didn't tell her is that I masterbated so much and caused this! Or that my skin is so badly scarred and stretched. Theres no way I can have a relationship with her. I need to solve this problem and I am done being sorry for myself. I am ready to try everything I can possibly do to be happy. I have been thinking about the future. I have been a low life all my life doing nothing for my future. Now that I know how bad this is I might want to become a urologist! I think I would be a very good one due to my young age and rareness of my case. Is there anyone that can help me pick out these problems? Do you guys believe this is a urethral stricture? Is there a site where people could help diagnose my problem by me giving them good detail? If I can help at anyone please let me know.
Just one point, What do you mean your "skin is so badly scarred and stretched?"
Skin scaring would have nothing to do with erections.
despise,
Your description of your pain is fairly vague and does not suggest to me a urethral stricture. In a urethral stricture, the urine stream is faulty - it may trickle or it may shoot at weirdly (especially if the stricture is at the end of the penis).
When you talk to a urologist (and NOT on a web site) do your best to describe in plain words what it is that you feel. Stop trying to diagnose the problem or where it is located, and stick to telling him or her what it is that you feel. For instance, getting a scope shoved up your urethra is quite likely NOT going to be of value - and why on earth would you want a doctor who does what a 17 year old tells him to do? I would prefer a doctor who thinks for himself and then tells me what he thinks (and what he thinks the next best thing to do is).
So, instead of deciding what tests you are going to "push" for, think about getting advice and then listening to it.
Tim
Ok well I know I have something wrong with my urethra. Some doctor that doesn't even know what my penis looked like before said I had peyronies disease. My problem was that I wasn't telling him what was wrong. I was expecting him to know. My penis is like twice as big flacid then it normally is. Its swollen and he obviously couldn't tell that. I am simply having to many issues that aren't associated with peyronies disease.
Heres the deal. I have to wait for my urologist because we are broke. I want to ask some questions to see if anyone experience these symptoms. Only for my peace of mind. When you guys found out you had Peyronies Disease was your penis swollen? Mine is always larger then normal and full of blood. Before i would be really soft and flacid. Now it hurts and is big flacid. A example is I went to six flags and my penis would hurt on every ride I went on. When I lay on my bed my penis pushes down and sticks to my balls which causes stretching of the skin. I have woken up sometimes where my penis in flacid is all the way to left. I have been taking hot baths and i noticed the skin would swell up and curl over the beginning of my the head of my penis. It will shrink massively and then relax and be extremely large and full of blood when flacid. Its becoming a big issue I have to wear gym shorts because it hurts. One day I was at my cousins house and it shrunk and hardened. When I walked up her stairs my penis would be pulled by my boxers and hurt like crap. I have problems getting my urine out too. Sometimes I have to push for the rest of the urine to come out. I have been taking Flomax from my urologist but he says this is to relax my bladder. When I pee sometimes i have to put a effort to push out the urine does this have anything to do with Peyronies Disease? I also have a issue with my penis moving and changing weird shapes. It will bend up words but usually flacid its hanging to left. Im pretty sure this has to do with urethral issues but I just want to know becuase I have to wait a while untill I can find out. Is waiting a long time with a urethral injury bad? Could it cause more problems. Thanks for everyones help I love you all for your dedication.
despise,
What you describe is NOT classic for Peyronie's Disease. I do not know if it is something that is "bad" or not, but the symptoms that you describe are bad enough that you should be seen NOW. You say that you can't afford to go to the doctor right now? To me, it sounds like you can't afford NOT to go. Perhaps even a trip to the ER - but you should be seen as what you describe is abnormal and different than what was going on (as I recall - perhaps incorrectly) than when you were first seen by a urologist.
Sorry to not give you peace of mind. I wish you could find a way to deal with this.
Tim
Despise,
If you are sure you are not obsessing, and your accounts of pain seem like you are not, then Tim is dead on. I would not be too concerned with moderate curves in a flaccid penis but if you clearly: are swollen, have unusual trouble urinating, then go to the E.R. if you must but see a doctor.
It is even a bit unusual that you would have pain when squeezing or palpitating your flaccid penis with your fingers.
If you have some sort of infection, depending on what it is, it could cause serious problems including kidney damage or other issues we could only guess at.
You either have a very strange case of Peyronies Disease with an inability to assess and describe it or you have something else going on.
Hallo i'm new to the forum,
and have a bit generall question. Often you can read people writing about corporal fibrosis, due to Peyronies.
I was wondering what exactly it is, and how does it come to that fibrosis.
Here is a quick look at my case. I have a slight till moderate curvature due to an injury on one side of the penis.
I also have something like an hourglass effect that goes one time around the whole penis at the exactly location.
I can not feel any hard plaque or something like that when in flaccid state, maybe because it didnt evolve till now, but in future will. (Injury since May08). The Problem is that my penis is much more hardend in the erectile state than it was before the injury.
It's like it lost the bit of elasticity that i used to experience before and think that should be normal. My biggest concern is that the penis is also quite hardend in the flaccid state. I woulnd say swallen, but it doesnt feel soft, more like rubber, if u squeeze.
I was never been able to experience the flaccid state that i had before the injury since then.
The corpora are always like in a semierect state.
So now i am wondering if that kind of issues could lead to corporal fibrosis. I feel like my penis becomes less and less flexible.
Has anyone experienced similar issues?
I been to a doctor directly after the injury (3 oder 4 days), he didnt say much, said it might heal for its self, and that he only new the big injuries like the standard form of a broken penis etc.
P.S.:
I was able to deal a bit with the harded state, because i was taking the vitatim E. I think that it helps to keep the blood thinner. As soon as i gave it up for 3 or 4 days the issues became worse.
I am planning to visit an other doctor after the holiday, but dont think that he will know the long term effects of that kind of problems.
Thank you
Kenny
An update to my situation... these may need to be moved. I am thoroughly disgusted. After waiting FOUR MONTHS to have a doppler ultasound done it was finally done. The actual ultrasound was done by technicians and not by the urologist himself. I recieved an injection of half of what is "normally given" in this situation because they felt that would be enough. They told me they would be back in fifteen minutes and for me to get as much of an erection as possible. After less than a minute I had a large erection. I yelled for them to come back but noone could hear. I tried to sustain my erection for a full fifteen minutes but found it to be impossible. When the technician came back she wasn't sure whether to give me a second injection or not so called the urologist in the other part of the building who told her to do so. This gave me an erection that would not go away and they recieved the necessary imaging.
At this point I pointed out areas on my penis to my technician. Things included...the tendon-like and lumpy development in the center of my penis that prevents elasticity and hurts. It was not there before the onset of my problems. It has gotten steadily bigger. Also, the pea-looking lump right underneath the head of my penis that has since spread to a ring of what looks like a puffy mass. Also, on the underside of my penis, the mass that was there as well. I explained that this is where I had lots of pain as well. These are all areas that are only visible when I have a erection and are more pronounced the larger that erection gets. She said that she did not know what those were but to tell my urologist.
My appointment was an hour later about a five minute walk down the hall. He comes in and says I have venous leakage. Also, that it is probably congenital. My jaw hit the floor at this point. Congenital my ass. I had visited him at two previous appointments, the first two have an initial exam upon which he prescribed me Trental. The second of which was to see if he could give me anything to stop my nonstop and impossible to get-past pain. He prescribed Lyrica. At both appointments he said that he would see about moving my doppler ultrasound study to a closer date but this was not able to be done. My first appointment with him was on August 12th, the ultrasound was done on December 29th.
When he saw my dazed look, he backpedaled and said "Well..did you have any penile injury?" I exclaimed "yes!" which is what I had explained in great detail on each of my previous two visits. The only thing it entailed was being masterbated twice by my girlfriend, the second time during I experienced a pain that I thought was just from excessive friction. The morning after, I had swelling near the head of my penis, a large bruise/blood under the skin on the left side of my penis, and ten or so small red bumps near the bottomof my shaft also on the left side.
He said hmm well that could have caused it, and that it was possible that I had a penile fracture. I questioned about the awful pain and the discussions we had on previous visits about Peyronie's. He said he recommended Levitra. I asked about the pain again and he said that Levitra would help me achieve a full erection. I told him that my primary concern was getting rid of the pain. He said that he understood that I was waiting to have sex until marriage and that I did not have to take the Levitra if I did not want to. I said that this was certainly not what I was looking to do, but just that the nonstop constant pain that prohibits from me functioning on a day-to-day basis as I normally do was my primary concern.
I find it impossible to go the gym anymore which I would do five times a week because of my chronic pain. The emotional toll my condition is having on the rest of my life including my relationship with my girlfriend of 9 months (who I had only been dating for two months when I first began having problems) is unbelievable. After I explained this, he said he could recommend a good sexual counselor. I just stared at him very confused. I asked him if there was anything Peyronie's related and he said that he did not see any calcification but that he did see my curve on the ultrasound. He said that there was no scar tissue that showed up but that thin layers of scar tissue cannot be seen so that does not rule out scarring. He said that Peyronie's pain goes away in 3-4 months. I brought up the hourglass indentation that sometimes appears, the severe penile shortening, the loss of elasticity, the ever-increasing curve as well as number and size of lumps, etc., and he said that the Trental will deal with that and that it is proven to do so. I asked if that meant I had Peyronie's and he said that I had venous leakage. I asked if that would cause the awful pain that I have and he said no. I pointed out that on the website www.menshealthpd.com there is a video interview with him that has him saying "unfortunately there is no evidence that any oral medication has any effect other than placebo when it comes to Peyronie's". He gave me a noncoherent answer to this which I don't remember any of.
I also brought up the other issue I am having. When I pee, it takes a long time to get everything out. There is no force to my pee stream. It hurts after I pee. After I pee, if I don't stand still for at least a minute after I think I am done (shaking does not help) I will pee in my pants. I have never had a problem with peeing before my issues began in June. When ejaculating, it is even worse. The sensation when ejaculating is very small. It hurts no matter what I am doing, but when ejaculating it does not shoot out. It certainly used to. It very slowly trickles out. I takes around fifteen minutes for my penis to restore itself to its flacid state. This only happens after all the sperm has made its way out. There is a significant amount of pain and soreness as this is happening. The diagnosis from my urologist? NO DIAGNOSIS. Unacceptable.
He let me know that there was nothing that could be done for venous leakage. There was no legitimate surgical option and nothing in the way of VED or other options was mentioned, just taking Levitra. At this point I brought up how I had sustained unfortunate further injury to my penis that looked to have substantially added to my scarring in late July. The inital incident occurred at the beginning of June. After being given Levitra by a urologist, he instructed me to masterbate. I did so with my girlfriend who did it gently. I was certainly fuller than I had been in over a month, but all of a sudden I felt a great deal of pain. At that point my erection immediately went away. A few days later I noticed the tendon-like lump that has continued to grow. It runs from the base of my shaft to near the head, and is in the exact same spot where I felt the pain. The uro said that I just had to be careful. I explained to him that I was worried about further injury and he said that the sexual counselor could help with that.
I thought that I had found a doctor who could help me. Unfortunately it appears that I was wrong. Now two days later I sit at my computer hurting worse than ever. Why is this? Because of my new pain! There are two injection marks on my penis. The first is a very small needle-prick mark that is healing nicely. The second? A horribly purple, black, and blue mark that is spreading. It feels numb in some areas and hurts a lot. This mark is from the second injection I recieved. The one that was given to me when I was PARTIALLY ERECT. From everything I have read on here if that was not an unfortunate error in judgement I don't know what was. Sucks to be me I guess?
The injections were both done on the right side of my penile shaft. I have noticed that since then there is a noticeable amount of increased curvature toward the left. I don't know if this is because there is less blood flow on the right side of my penis due to the large and painful injury on that side? Too confused and upset right now to even think clearly.
I don't know what to do. This visit to my urologist, the one I had been waiting for four 4 months, was supposed to provide me with something other than more questions. I was not looking for closure, as I realize that is something I will either never recieve, or it may be a very long road to. But I wanted at least an idea of exactly what I am looking at. The diagnosis of venous leakage along with a sample of Levitra was unacceptable in my eyes. It did not address any of the pain that I am having. It is my understanding that venous leakage can occur sometimes where plaque is located? Would dealing with the plaque address the leakage or is that not something I should strive for? Also, four months of Trental has so far done nothing for me.
I need help. What route should I take? Another doctor? I want some semblance of my life back. I have always been a very sexual person but that is an impossibility for me now. I am in constant pain and am so tired of dealing with what has been happening to me for the last seven months.
I think that you should buy a plane ticket and see one of the hot shot Peyronie's specialists frequently referenced here. I'm sorry to hear about you experience at this office, that is horrible. Docs should know that their patients are already in an embarrassing situation, and leaving them in a room with a full erection for 15 minutes unattended is such a complete disregard for the patient physically and emotionally.
As for whether the plaque's resolution can cause a resolution in venous leakage: I have also been told by a urologist "no" on this. It doesn't make sense to me. Everyone talks about the body's ability to heal itself, especially in young people. I guess the odds are stacked against us and if there is even a possibility to beat them it will either be through freak luck, or an extraordinary effort...probably both.
Al, I'm hurting for you brother, reading your message. Have you considered a trip to see Dr. Lue or Dr. Levine? I know it's expensive, but perhaps you could borrow money from a relative or something. Just a thought. Apparently, finding a urologist who knows how to even speak intelligently about Peyronies Disease is like trying to find a needle in a haystack. At least with Lue and Levine, you know you're dealing with qualified experts.
I wish you the best, man.
Nemo
Al,
What was done to you by this "doctor" and his staff of fools is horrible. I would most definitely consult another urologist. If you can't afford to go to one of the super-stars like Levine, anyone would seem to be better than your current one. As far as Trental goes, go to the "Oral treatments..." page and read George 999's post #2807. I stopped taking Pentox after six months because it didn't seem to be doing anything, I guess I was wrong to stop and will probably start taking again. Best of luck. BTW, when I first went to a urologist (who claimed to have treated a lot of Peyronie's patients) I knew more than he did, all from info that I gained from reading these boards.
Alcohen,
It is clear that the 2 urologists you have seen are not able to help you. If I recall correctly there is another urologist you saw before this guy. Don't get discouraged, but you need to get to a sexual "specialist" not a sexual "counselor" IMHO. Also, seeing a Peyronies specialist like Dr. Levine or Dr. Lue (or others) is a step in the right direction. But don't be so convinced you have Peyronies. The conditions are similar but you might be chasing a blind alley on this. Your symptoms are similar to Peyronies but are not definitive.
1. Tendon like cord (does not indicate Peyronies)
2. Puffy like pea-sized mass (does not indicate Peyronies)
3. Inability to to void urine (does not indicate Peyroines)
4. Restricted steam of semen ejaculate (does not indicate Peyronies)
And the fact that "He said that there was no scar tissue that showed up " would also indicate that you might not have Peyronies. I'm not trying to be negative but trying to get you on the right path of diagnosis. The one thing this doctor did do finally is to consider what might be wrong with your penis. If I recall this was the guy who thought you were a sex starved teenager.
Don't get me wrong, I'm convinced you have some type of physical condition or problem. Whether it is a penile fracture infection, or prostate condition. But clearly this isn't the doctor to diagnose it. You need to get to a different doctor. I know this is depressing but many of us were on the same journey of one doctor after another until we find the one.
Les Willis
Thanks for the replies. Willis, this is actually the third uro I have seen. The first two of which were both very unhelpful and did give me the "sex starved teenager" mentality. Before that I had been to a general practitioner who had diagnosed me with genital herpes and told me that if I had gotten to him sooner he might have been able to help but unfortunately I should have been more careful sexually. He was very badly wrong. The first uro I went to, after a third visit and lots of Levaquin later pronounced me "completely and 100% back to normal". He said that this was clearly a problem in my head a sexual counselor would be necessary. When I mentioned hte pain he just shrugged. This third uro had seemed nothing but helpful and had acknowledged right from the bat that I had a physical problem and prescribed Pentox immediately saying that it sounded like I had Peyronie's.
One of the things he discussed with me upon first visit was that Peyronie's often started with patients seeing a pea or disc-sized lump that then spreads and causes pain. If he had not been helpful duirng that first visit I would have continued my uro search and probably would have immediately sought out Dr. Lue or Levine. However, this would have been very expensive whereas this uro was only a 2-hour drive away and 15 minutes from my parents house so I would visit them when seeing him. The first appointment was in August and as I said I had to wait 4 months to have the ultrasound done, during which my penis continued to worsen. Because from the diagnosed venous leakage, I have had no nighttime erections that I recall and rarely any during the day unless I am actually holding hands with my girlfriend or hugging her, in which case the erection hurts and then goes away.
During these four months the pain has continued and my penis is clearly much smaller flacid now than it was then. I can only assume that perhaps some corporeal fibrosis has started due to the lack of blood flow in that area.
So a doctor and three uro's later, a total of 9 appointments and a lot of money later, I am back where I started but in a worse spot physically...
Which doctor, Levine or Lue, would you recommend? I am growing weary of all of this but am glad for the insight that all of you have provided me here. Any more help would be great.
alcohen
Have been following your post. It does sound like you have venous leakage and corporal fibrosis. The related penile shrinkage can be an emonitonal roller coaster. I know I have been there. I have had all your symptoms except the pain. With the pain have you tried a VED? If not try it as soon as you can to combat the penile shortening and use Old Mans exercise.
Seems your doctors have not done you any favors. Try the docs recommended here. You are on the West Coast and I am in the Southeast so I do not know of a doctor that can help. I went through 5 urologist before going to Vanderbilt, where I finally got help.
Good Luck and do not quit trying.
Jackp
Al, Sorry to hear that you are going through all of this. If you are having a problem with your urine stream, you should probably have a simple urine flow test to shag out any urethral or prostate problems. One the other hand the whole thing with the nodules and the cords sounds VERY typical of Peyronie's to me. Not everyone with Peyronie's gets these kinds of symptoms but Peyronie's can DEFINITELY cause them. The nodules are localized areas of inflammation and they can come with or without pain. When they get really inflamed they can be REALLY painful. Pentoxifylline will really knock them down well. The cords are actually bands of fibrous tissue that don't stretch like the normal tunica tissue. They take longer to deal with.
At this point, I would:
1) CONTINUE to take the Pentoxifylline. Hopefully your prescription is for 400mg 3X per day. Over time this SHOULD help with the pain, IF the pain is Peyronie's pain which is what it sounds like. The doc who prescribed the Pentox sounds like he has this part correct. I would not be completely convinced about the issue of venous leakage. Pain can also cause an erection to collapse prematurely and it seems like this doc wasn't getting it as to the level of pain you were experiencing. Peyronie's can cause devestating pain. And when you experience this pain, your libido crashes in flames. When I first developed Peyronie's, I went for months without a normal erection because of the pain. Keep taking the Pentox! Pentox can take a long time to do its work, its a good drug for Peyronie's, keep taking it. PENTOX WILL PREVENT YOUR PEYRONIE'S FROM GETTING WORSE, DON'T NEGLECT IT! Also, your Peyronie's has to be pretty advanced to show up on ultrasound. Its not surprising the doc wouldn't see it on the ultrasound. That is actually a GOOD sign! In general, I think Dr Carson is a pretty good Peyronie's doctor. I would continue on with him for help in dealing with your Peyronie's issues.
2) Your urine stream issue needs to be dealt with. The Peyronie's doctor would not be expected to have a clue about this. He is the wrong doctor for this problem. For this problem you need to go to a REGULAR urologist and tell him you are having a problem peeing and would like your urine flow checked. DON'T tell him about your ejaculation issues because they are meaningless. Ejaculations can be like Old Faithful or drip, drip, drip or anywhere in between for any number of reasons, none of which are medically meaningful. In other words, it doesn't require treatment. Urine flow on the other hand IS an important issue and you SHOULD have it checked and evaluated.
3) You also need to get your Vitamin D levels checked out if you haven't already. I am increasingly convinced that Vitamin D is really important in dealing with Peyronie's and that normalizing Vitamin D levels to greater than 50ng/ml can help with Peyonie's pain and help correct deformity. This is something your primary physician should be able to help you with. Half the population is Vitamin D deficient and I think that is a big factor as to why people are ending up with Peyronie's among other nasty diseases. GET IT FIXED!
- George
Didn't you maintain an erection with an ED injection???? (or two)
Injections only dilate the arteries. The drug has NO direct effect on the veins. As the blood flows into the penis at a high rate the filling penis causes the veins to be relatively sealed by the pressure of the erection. The flow out is slower than the flown in until a firm erection is maintained. When the arteries constrict the process reverses. The shots worked. When the arteries were dilated the veins were sealed and an erection was obtained.
If I have your account correct, that is not venous leakage.
George,
I understand that several on this forum have nodules and cords associated with their Peyronie's Disease. But anything I have read medically that defines Peyronies seems to focus on defining Peyronies with the formation of scaring and plaque which causes the bend. Could the nodules and cords be something different. I'm not saying this is or isn't associated with Peyronies Disease. For my own knowledge I'm tyring to understand the medical definition of Peyronies.
Does anyone have any links or medical references that mention the leisions and cords as being Peyronie's Disease?
My suspicion and assumption is that "cords" are nothing more than a pattern of scar tissue. Just as scar tissue can form in patches or run the circumference of the penis causing hour glass deformity, it can run in a narrow tight band(s) that feels like a cord or cords and are in fact cords of scar tissue running the length of the penis.
But why would they form in such a defined pattern? What if the "cords" are really something else? I think we need to better understand what these are.
Quote from: lwillisjr on January 03, 2009, 02:22:04 PM
But why would they form in such a defined pattern? What if the "cords" are really something else? I think we need to better understand what these are.
I think the only appropriate solution to understanding any abnormalities on the penis is to have a hands on examination by a urologist skilled in Peyronies Disease issues. I have however known of deformities referred to as "cords" by a patient to be identified as plaque (scar tissue) by a urologist. That is not to say that all "cords" are the same condition or that anything a patient identifies as plaque could not be something else. That is why an experienced doctor is needed.
I know of no case reported on this forum where anyone reporting "cords" ever had them identified as anything other than plaque.
I think it is really important to understand that doctors and researchers don't look at disease in the same way as patients do. Therefore a doctor or researcher would never use a term such as "cord". When confronted with such a term they would describe it as only a patient's perception of something much more complex going on. It is really a very subjective description of a band of fibrous tissue. Why the defined pattern? Who knows? Why do some penises bend to the left and others to the right and some just get a bottle neck in the middle. All caused by the same disease syndrome. But I can say that I have NEVER heard of anyone complaining about a perceived cord that wasn't at some point in the process diagnosed with Peyronie's. If you can find someone with a "cord" who has seen multiple Peyronie's specialists who have eliminated Peyronie's from the diagnosis, then I will believe that it can be a different disease. Or if you can show me any medical literature describing cords a related to any other disease of the penis, I will be equally impressed. But, at this point they are so intimately associated with Peyronie's I can take no other position than to attribute them to the Peyronie's process. Not all men get the kind of patterns that produce cords, but many do. Its all just Peyronie's. - George
"Cord" is a specific term that refers to a cord or rope like bundle of scar tissue (when discussing scar tissue). It is a commonly used term by physicians for the same reason it is used by patients - it is descriptive as to the shape of the scar. IT does not confer a different understanding of physiology or anything like that, though.
Tim
Quote from: Tim468 on January 04, 2009, 04:49:01 PM
"Cord" is a specific term that refers to a cord or rope like bundle of scar tissue (when discussing scar tissue). It is a commonly used term by physicians for the same reason it is used by patients - it is descriptive as to the shape of the scar. IT does not confer a different understanding of physiology or anything like that, though.
Tim
Thanks Tim! I stand corrected. :) - George
You are right, though, about it being a very subjective finding.
Tim
In response to alcohens remark about urinating etc: I would like to say I have the same problem.
I definitely have Peyronies due to traumatic injury to the penis I can clearly remember.
I have squeezed my penis very hard in flaccid state when I was in panic due to having no feeling in it. You dont have to tell me how stupid that was, as I know all about it.
Ejaculation is somewhat blocked, drips out or just a bit comes out and the rest flows slowly after, also not enough as the amount that has been built up, I just feel more has to come but it doesnt happen. I also hurts a little bit, kind of burning sensation.
Ok but also the urinating is obstructed, and indeed the last bit doesnt come out right away. Personally I dont mind this little part of my disease all that much, though it is definitely uncommon.
Just adding this, because it is said it does not indicate peyronies, though I have this too. I think it is in fact simply peyronie close to or maybe even going around the urine-tube.
For me, peyronie also started like a BB size thingy, though many have formed all over the top of my penis. All of them together in the end made the hourglass effect you read a lot about here, so in response to how this starts, I think it is like this: first one BB is made that makes the tissue not expand anymore, other tissue nearby has to stretch more than designed for, and gets damaged too resulting in all tissue all around getting damaged untill the hourglass is made, ofcourse nothing scientific here just a theory.
In case anyone wonders I want to add I am a 29 male from the netherlands, half a year ago the disease started giving me a cool 45 degrees bend left and a bit up too. I still had good girth on my penis back then, 14cm around it.
Over the past 6 months the situation got a lot worse, I got an indention of in fact all the tissue under the glans, which has started to shrink all around, untill my girth was down to 12 cm, locally and only the top so it looks kinda weird.
The head also rotated a bit around the axis of the penis. And things are still active so it can still get a lot worse.
I have used vitamin E in the past but I stopped as I thought it was bad for me. The BB always seems to be formed near an artery for whatever reason and vitamin E can cause artheriosclerosis. My urologist simply dismissed that, but I wasnt checked on artheriosclerosis.
On advice of urologist I now do not use any medication and simply wait for the disease to be over..
I mentioned pentox to him (after reading here been here for over 4 months now) but he told me "nothing works and I advise you to just sit back and let the disease take its course" I dont think he knows it.
I should find another docter right?
Anyone has some advise to give and a hello to everyone.
Hi Fredca!
I think that you should get going with the VED and find a new doctor. He may prove to be "right" if nothing you do helps, but you will never know until you try, right?
Tim
Fredca,
Welcome!
Next time you see the urologist, you should take with you the three documents archived on this website detailing the benefits of Pentoxifylline. They indicate that Pentoxifylline is being prescribed for treatment of Peyronie's by two of the leading Peyronie's specialists in the United States. These are located here (https://www.peyroniesforum.net/index.php/topic,772.0.html) and here (https://www.peyroniesforum.net/index.php/topic,772.0.html). Be sure to indicate to your urologist that Pentox is a new and effective treatment for Peyronie's and hand to him these papers.
Also, you should see your primary care doctor and ask for your blood levels of Vitamin D to be checked. Recent studies are showing that most people, especially people in higher latitudes like the Netherlands, have dangerously low levels of Vitamin D. I believe that this can contribute to the development of Peyronie's. You need to show this doctor this statement by no less than 18 top vitamin D experts: http://www.prohealth.com/library/showArticle.cfm?libid=14114 (http://www.prohealth.com/library/showArticle.cfm?libid=14114). Also show him (or her) this one from Johns Hopkins researchers: http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html (http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html). Also, her is an article from the UK on Vitamin D: http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp (http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp). All of these articles are VERY current.
The VED recommended by Tim is also VERY helpful!
I wish you the very best in your quest for health! - George
Quote from: lwillisjr on January 02, 2009, 11:16:53 AM
Alcohen,...
Your symptoms are similar to Peyronies but are not definitive.
1. Tendon like cord (does not indicate Peyronies)
2. Puffy like pea-sized mass (does not indicate Peyronies)
3. Inability to to void urine (does not indicate Peyroines)
4. Restricted steam of semen ejaculate (does not indicate Peyronies)
And the fact that "He said that there was no scar tissue that showed up " would also indicate that you might not have Peyronies. I'm not trying to be negative but trying to get you on the right path of diagnosis.
what you are experiencing sounds a lot like what i am experiencing. read my post right before yours. your penis seems hard and almost erect while flacid? when i was flacid before this i was like 2 inches in flacid state. but now i have become like 4 in flacid state. im getting worried if i go to a ER will we not have to pay for it? my skin isn't healing either. i guess they are permanent scars or maybe something else. my main vain on the right is bulging out and whenever i touch my penis it seems hard right under the skin. i even felt pain on the urethra or somewhere. deffenitly not my peyronies disease if my peyronies disease is on my bottom left then why would i have pain around the middle where the urethra is. my urologist is from USC how can they not see this? Do i go to the ER or do i just try to push my urologist to see me again quicker and explain every issues im having in detail?
fredca - get onto :
1) VED
2) Trental ( Pentox)..... find a doctor who will prescrib\e it
One thing I want to mention, and am totally not sure of whether this is common, is that my penis is always swollen.
Swollen in the flacid state, at first it had gotten a bit bigger in flacid, which I adressed to the infection of peyronies.
Now, it is almost half erect a lot of time. Also with almost no stimulations becomes 60% erect.
I have all the other symptons of peyronies, the plaque, the curves, and indention.
Only a few days back I realised I may have something else than Peyronies Disease and that being a low-flow priapism, leading to Peyronies Disease due to keeping the same blood in the penis for too long.
This may not be true but I will defninitely point this out to my uro tomorrow, as the swelling of the penis in flacid is not something people mention a lot, then again it may be because they dont mind having a larger flacid penis and it is all just peyronies and very common.
Fredca,
I am not sure what you meant by the "infection of Peyronies". But Peyronies Disease is not an "infection" which is an invasion by some organism. The characteristics of an infection and the treatment of an infection do NOT appy to Peyronies Disease.
You also mention a "low flow priapism" . I do not believe there is such a thing since priapism by definition is a persistent erection preventing a blood exchange in the penis. You may indeed have swelling from a condition or infection not related to Peyronies Disease or you may have a loss of elasticity that can prevent a flaccid penis from contracting as much as normal.
You should see a doctor so he can determine which of these, or what other thing may be wrong.
George,
Very nice and helpful posting.
FYI, I live in Texas and went to a local urologist, who put me on a series (12) of injections of verapamil into my lesion, but that didn't seem to help at all. At the conclusion of that treatment, he said that there was nothing else he could suggest by way of a treatment (he was a good enough doctor, but not a Peyronie's expert). So I saw Dr. Lue in California last May, and he conducted a very thorough exam (with ultrasound).
Lue then prescribed Pentoxifylline, which I've been taking religiously since then. He told me that it takes quite a while (at least six months) for Pentox to start working, if it's going to work (and it doesn't for everybody). I saw Dr. Lue again over the recent holidays, and had another ultrasound exam. Remarkably, the calcium deposits are greatly reduced now, and I no longer have any pain. I also think that the bend angle is somewhat less now, although that's a personal observation.
I'm extremely pleased that things are clearly improving (although I still have quite an angle when erect). It was absolutely the right decision for me to go see Dr. Lue, and I would recommend that anyone else with this affliction see a comparable expert.
By the way, a month's supply of Pentox (400 mg, 3x/day) is less than $10 at Costco.
Hope this helps, and just wanted to pass along my own experience.
Jerry
Quote from: George999 on January 05, 2009, 08:14:50 PM
Next time you see the urologist, you should take with you the three documents archived on this website detailing the benefits of Pentoxifylline. They indicate that Pentoxifylline is being prescribed for treatment of Peyronie's by two of the leading Peyronie's specialists in the United States. These are located here (https://www.peyroniesforum.net/index.php/topic,772.0.html) and here (https://www.peyroniesforum.net/index.php/topic,772.0.html). Be sure to indicate to your urologist that Pentox is a new and effective treatment for Peyronie's and hand to him these papers.
Also, you should see your primary care doctor and ask for your blood levels of Vitamin D to be checked. Recent studies are showing that most people, especially people in higher latitudes like the Netherlands, have dangerously low levels of Vitamin D. I believe that this can contribute to the development of Peyronie's. You need to show this doctor this statement by no less than 18 top vitamin D experts: http://www.prohealth.com/library/showArticle.cfm?libid=14114 (http://www.prohealth.com/library/showArticle.cfm?libid=14114). Also show him (or her) this one from Johns Hopkins researchers: http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html (http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html). Also, her is an article from the UK on Vitamin D: http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp (http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp). All of these articles are VERY current.
The VED recommended by Tim is also VERY helpful!
Jerry
Good information in your post. I am 2 months into taking Pentox, however I have long standing non-calcified fibrosis (3 years). You didn't mention if yours was recent or long standing, however the fact that you mention calcium deposits makes assume you were past the active phase. How long on Pentox until you noticed some subjective change?
Your feedback would be appreciated as it would give some hope to others.
UK
I was still in the active phase of the disease when I started taking the Pentox (first noticed the Peyronies Disease about nine months earlier), and think that the Pentox stopped the worsening of my condition.
Frankly, the improvement due to Pentox is very gradual, and you hardly notice it day-to-day -- especially during the first few months. It seems like nothing is happening. But after seven months (when I had my checkup with Dr. Lue), it was clear that the size of the lesion and calcification was significantly reduced. That's not to say that it magically returns things to "normal," as I still have a significant bend and some reduction in length.
I had actually planned to have Dr. Lue perform surgery just before Christmas to help straighten things out, but on his advice scratched the surgery and decided to continue on with the Pentox therapy. As long as things continue to improve I'm going to wait on the surgery.
Hope this helps.
Jerry
Quote removed because it quoted an entire post just prior to this post - violation of guidelines under "Read this First"
Administration
I have found a thread elsewhere, where people discuss the phenomenon
1) swollen in flaccid state
2) hardness in flacid state
3) painful urinate
http://www.medhelp.org/posts/show/452831
there are a few suggestions there, but sadly NO ONE again who had that symption diagnosed and cured.
IT is weird that so many ppl seem to have this problem since last year and all are clueless what is causing it, all no answers.
A swollen penis in flaccid is NOT normal and I think it results in the peyronie symptons we have, which is scarred tissue.
I believe my continuous forming of new "pea sized things" that result in the plaque is CAUSED by anything.
IS it even plaque I have?
I have swollen tissue for some time, then it disappears and what leaves behind is a hard scar. THis goes very fast (process of a month?) and nothing like "half a year to stabilize" people discuss here.
There MUST have been people before who had it, and there must be a reason for this to happen. I can not find it though.
jerryw - are you in pain at the moment or has that gone away via using pentox
Abnormal shape or feel to a penis suggests circulatory problems. It is possible that a tumor could do that too. Either demands a full evaluation.
Tim
alexk
As far as riding a bicycle, you can get a saddle with the Minkow Wedge. It is a cutout designed to take the pressure off the perineum. I have one and it works.
Two thoughts. Alex, I agree with what you said, but want to comment on what I did not see you say... he needs to see a doctor.
Also, a recumbent bike allows for better pelvic circulation, or a perineum-sparing seat. All male cyclist should ride that way. I often wonder if my many miles of touring ona bike with a hard saddle contributed to my pelvic region problems.
Tim
I followed up with my uro after my first eval, and after he said that there was not much to be done. He still had little to add. Now, three months after that visit, my one sided indentation is progressing to the other side, and I fear a full hour-glass deformity. Still on Vit E daily as only therapy. VED would not be acceptable to my wife.
sigh.......
Miller798:
Well now, it is kind of difficult on you if your wife does not accept your using a VED. If you don't mind what is her main objections to its use?
My wife is somewhat on the prudish side, but after letting her talk to my uro who prescribed its use, she realized the benefits of it. Since a radical prostatectomy rendered me just about totally impotent coupled with venous leakage, the VED proved to be a valuable source of erections.
In addition, add in the Peyronies Disease and the VED therapy successfully got rid of at least 99% of my Peyronies Disease symptoms. You might try getting her to visit this site, especially the women's forum, and see what wives and other significants do for their men.
I am interested in finding what is her objection if that meets with your and her approval.
Regards, Old Man
I'm a 39yr old healthy male that injured myself while having intercourse with my long time girlfriend back in July of 2008. She and I split up in September and shortly thereafter I noticed a pain in my penis when I got an erection. I went to see a urologist in November and he told after a MRI that I could possibly get Peyronies disease. I'm scheduled to see him mid Feb to check on things and to see if the problem subsided or if bending is occuring. Everythng has been fine until 2 weeks ago. I started noticing that the upper part of my penis has slightly bent downwards and slightly to the right. I'm not happy with this but could live with it if the pain will finally subside. I noticed I can't get a full erection because of the pain. I'm wondering if my penis is going to continue to bend or stay the way it is. does anyone know when the bending stops and how lng the pain stays there for? I'm very nervous because I am now single and would be demoralized if it gets worse. I was laid off from my job and do not have health insurance at the moment. So, I can't go for my follow up appointment as scheduled. I'm just really hoping for some basic answers. Any information would be helpful. Thank you.
Ttdtpafl,
Sorry to hear of your symptoms. Seems clear that there was some type of trauma from what you described, but don't jump too early to the Peyronies diagnosis. Picking up on your own words your urologist said you "could possibly get" Peyronies disease. I guess there are lots of things we might possibly get....... And using an MRI to determine Peyronies Disease is new to me. It is usually done through the use of an ultrasound or direct examination by feeling for the plaque. So I guess I would pursue a more precise diagnosis.
That being said.... Those of us who have had this disease can certainly appreciate your fears and concerns. By studying information on this site you will find that it strikes everyone differently. It is hard to say if you will pain, how long, will the pain go away, etc. Some of us haven't had any pain while others have had extreme pain. In some cases it goes away and in others in get worse. Same with the bending. And stabilization results in different ways and various amounts of bending.
Sorry I don't have any quick answers to your questions. But this is a great support group and you are amongst friends. I'm sure others will offer their opinions as well. There are lots of great suggestions here to try whether you eventually diagnosed with Peyronies Disease or not. Especially various things to try particularly to address the pain you are experiencing. The most common drug is Pentoxifylline but will require a prescription from your Uro. See George999 posts as he has lots of good suggestions for health store and over the counter drugs.
Ttdtpafl, if I were you I would get on the VED immediately, using a mild level of vacuum each session. I developed Peyronies after bending during a couple of sex sessions with my girlfriend. I was diagnosed with Peyronies about 6 month later and became aware of the VED 12 months after the diagnosis - 18 months after the sex session. The VED has helped. I also see the VED as therapy that should be applied to a healthy penis to keep it healthy as we age. I also believe that if I was using the VED during the early stages of Peyronies development that the bending and loss of length of my penis would have been much less. These are personal beliefs of mine so take them as that. Listen to others on this forum and do something. There is good advice here.
What is VED? I'm also reading alot about traction. Should I invest in this device? Just to clairfy, my doctor told me I have Peyronie's disease. Thank you for your suggestions.
Ttdtpafl
The VED is a Vaccum Erection Device. My peyronies started in 1995 but did not find out about VED exercise until 10/07. It helped me regain some lost length and made my penis much healthier.
I would suggest that you go to the VED section. There is a ton of information there and Old Man is there to help, he is the pro that helped me.
BTW If your doctor will give you a prescription for a VED for ED your insurance company will probally pay part of the cost.
Good Luck
Jackp
What's the advantage of a VED vs a traction device or vice versa? Thansk for the info.
Ttdtpafl, there is no easy answer. You need to spend time reading the VED and Traction sections and then decide what best suits you.
Dear Trdtpafl (I sometimes imagine pronouncing these names...):
Under COBRA law, in the US you are entitled to continue your health insurance. Although it is expensive, you would be very well advised to do so; even if it means downsizing your living conditions. If you suffer a more serious medical problem it could bankrupt you for life.
I am assuming that you live in the US - otherwise, you'd have your health insurance basics covered by the government, like most of the rest of the developed world...
Tim
The slight curvature and slight indention thus far is in the upper part of my penis(around the head). Will a traction device work? I'm thinking no. Also, is Pentox for the pain?
Ttdtpafl,
As advised before, it would behoove you to spend some time reading here on the "Child Boards" to get caught up on what's what.
Pentox is not for pain, it is to reverse the effects of TGF-Beta1.
Tim
I am putting a direct link to the "Newly Diagnosed" or "Child Boards" below. These are highlights of all topics arranged in an easy to read format. Reading here will bring you up to speed. You are asking questions that have no clear answer at the moment. No one knows right now if Traction or VED is better than the other, but there is no lack of opinions and thoughts on the boards here.
Here's your reading assignment:
https://www.peyroniesforum.net/index.php/board,18.0.html
I personally prefer the VED over the traction. I never tried the traction myself but did the VED daily for a period of six months. Its easy to control your erection with it. The main downside to the traction is if you work during the day leaving it on all day could be uncomfortable or tough to hide. The ved you do in the privacy of your own home. I still have yet to see a scientifically valid study that says either or really works to cure peyronies....
comebackid
I have just been to a urologist yesterday and he has suggested that I might have Peyronie's disease :-(. I don't understand how this could have happened. My partner and I have never done anything to cause trauma to my penis. The more I think about it the more I think I have it. What is there for me to do? This is so depressing. I feel like I am half the man I used to be. I am only 19 and I have a disease that usually takes years to develop :-(. Things only recently seem to have developed signs of peyronie's. If I stop having sex for a while and keep things under control is there a chance that I will get better and recover? The doc said that he is confident I will make a full recovery, but I don't know anymore after reading all of these posts and websites. This is so distressful. It has only been a month since symptoms have onset. Only since the day I visited the doctor have I experienced symptoms of Peyronies Disease. How can I be sure I have it? How can I be sure things will get better? Does this happen at random to young people like me? What am I supposed to do?
richB,
Unfortunately many of us who have developed Peyronies are not able to relate this to any single event. And often when the trauma occurs it can be weeks before the Peyronies scarring occurs which futher complicates the ability associate the disease with an event.
You ask some good questions, and I can appreciate your concern. Since your uro "suggested that you might have Peyronies" makes it unclear. You might try posting some additional specific symptoms you are experiencing, pain, sudden curvature, etc. some of the guys here might be able to offer some advice. You might want to take a look at the child boards and previous posts for education. There is A LOT of information on this site most of which is first hand experience by those who have had this disease.
I would not stop having sex if I were you, but would just be careful. You are not going to make your condition any better or worse by stopping sex.
Also your uro stating that you will make a full recovery is miss-perception. I don't know of anyone who had Peyronies and then it cleared itself up. But many urologists seem to quote this for some reason. You will see the following posted time after time on this site....... Many urologists seem to be able to diagnose Peyronies Disease (sort of), but many of them don't specialize in the treatment of it. Don't know where you live but there are several good specialists referenced on this site.
In order to help I'll tell you my story in full detail.
About a month ago I woke up with this odd pain at my lower abdomen. Now, my partner and I had a little more rigorous sex than usual, so I attributed it to that and let things go as they please. My testicles were red and swollen, and I had trouble getting an erection. About a few days later, the pain itself had actually somewhat worsened and I decided to go see an everyday doctor.
The pain itself was solidly in my abdomen, nowhere else. It just stayed there and slowly went away. The testicles returned to normal, albeit admittedly smaller than usual, and everything seemed to even out to a dull pain.
In the time between this I still had sex with my partner, it was difficult, but nothing too bad. I decided to stop from risk of hurting myself. The doc said that this is a usual thing, you just strained yourself, nothing to worry about. He said he has seen penis fractures before and there is usually intense bruising. He told me to take it easy and not to worry. I did what he said and stopped all sexual acts for a good week to two weeks, except for on valentines day. After which I resumed sex with my partner. Things felt almost completely normal, I had an erection like usual, and everything was fine. After a couple days of sex things got worse again. They weren't as bad as before but still not up to par. I decided to go back to the doctor. She prescribed me medication for epididymitis, which I have been taking since. For the past week or so I have been experiencing varying degrees of pain in my urethra, usually when I have to urinate and post ejaculation. On Saturday I went to see the rocky horror picture show with my girlfriend, we didn't do anything that night, but I had a prolonged erection during the movie, probably for about a half an hour or so. Nothing long or out of the ordinary. Yesterday we had a bout of dry humping and such, nothing bad. The odd part is during the day and leading up to the night I had experienced some odd pain at the base of my penis on the left. That night we had some bits of dry humping while I had an erection, and the next morning I woke up with some bruising on the base of my penis on the left. I went to see the urologist that day. He took a urine sample but couldn't do all the tests because I was on an antibiotic.
Here is what I have been usually feeling leading up to today:
Pressure in lower abdomen, tightness of bowels, weird pain in urethra and urgency to urinate. The sensation is basically like I have gas but in the front of my pelvis.
Here is what I am feeling today:
There is a sharp pressure at the base of my penis, where the shaft meets my abdomen. It feels like I have pulled a muscle or something. there is the ever-so slightest curve to the left, but I have always had this curve, and normally it evens out. The pressure is strong and it feels like I have been kicked in the shaft. There is a small, cyst like lump deeeeep under my penis on the left, almost under the pelvic bone, but it goes away with erection. Erections have returned to their first difficulty. The only abnormality in the appearance is that it seems as though it has been slightly twisted counterclockwise. When I got an erection today it was weak but the left was a little weaker than the right. I am not sure if it is the pain that is effecting my erections or something else like Peyronies Disease.
My uro is at the Cleveland Clinic, so I assume he is pretty well educated. I have also been checked for scrotal hernias multiple times. There is also an odd warmness to the feeling.
Rich, If I were in your position, I would want to get on Pentoxifylline right away. It could prevent you from developing Peyronie's. This is a prescription med that you would need to request from your uro. You could tell him you would like to take it in order to prevent Peyronie's from developing. It is a very safe, inexpensive and proven medication. But it is not approved for use with Peyronie's. So you need to print out the material in the resource library here: https://www.peyroniesforum.net/index.php/board,10.0.html (https://www.peyroniesforum.net/index.php/board,10.0.html). You want the first two entries where two of the most prominent Peyronie's specialists endorse the use of Pentoxifylline. Your uro can consult with Dr. Levine (Chicago) on the use Pentoxifylline for Peyronie's if he feels the need. Secondly, I would get a vitamin D test. It is very likely that low vitamin D levels can aggravate and promote Peyronie's. More information on vitamin D here: http://www.vitamindcouncil.org (http://www.vitamindcouncil.org) and here: http://www.grassrootshealth.org (http://www.grassrootshealth.org). At the age of 19 you really need to make sure your vitamin D levels are in an optimal range of 50-70ng/ml and keep them there. - George
Rich B:
Welcome to the club!!! - guess what you have - you have peyronies disease - sorry man - its gonna be a tough one for you....try to relax and deal with it - theres no point freaking out - although i did for a year - get on pentox now and read the ved threads - this is WITH YOU for a long long long long time
Hi Rich B,
I think it sounds like what is happening to you is a work in progress. I would work - hard - to find a urologist who can do serial examinations and help you to figure out what is going on and treat appropriately. Although it sounds like you might be headed to Peyronie's Disease, it also seems like you are in the middle of an undiagnosed process of uncertain origin. It might be infectious, it could be malignant, but it is not yet figured out. True, when the dust settles, you may have weaker erections or a bend, but right now, I think the focus should be on working with a urologist to figure out what these changes mean.
In the meantime, I would get familiarized with what we talk about here (Pentox, VED, etc) so you can start to advocate for those things with the uro if and when the time comes.
Tim
Tim, I certainly would agree with you. The one thing I think he should NOT do is to take the wait and see attitude that his current doc is suggesting. He, instead, needs to start ruling things out. He is really close enough to Chicago that it might be worth it for him to let Levine have a look. - George
I have had bending and pain in my penis since last November/08. The pain - even while flaccid - comes and goes. Recently the pain has returned and become more constant. I also have a rather similar burning pain in my hands and feet. Can there be any link going on here? How long does the inflammation stage last. I can live with a bendy penis (to some extent) but I do NOT like this pain/discomfort. Advice PLEASE! :'(
wow - i thought i was fine and doing well , but guess what I have a new dent on the right hand side and its causing an indentation on the side thats quite visible and an extra bend that I did not anticipate - ive had pain the last couple of days ( the same pain that i thought i had left behind) - the bend is almost like a swollen curve bending to the left - why why why me???
What should I do - should i re-do the ved from the beginning again...???
Freaking out a bit here and feeling despondent
It sounds really challenging Iceman. Hang in there friend.
Tim
Bertie,
Not sure what is happening, but I would probably hit the anti-inflammatory meds hard (ie 800 mg of ibuprofen three times a day for two weeks). YOu may be having concurrent inflammation of the palmar and plantar fascia of your hands and feet, which can be involved in Peyronie's-like problems for up to ten percent of men with Peyronie's.
Best to see your doc.
Tim
Bertie,
I agree with Tim. Hit the anti-inflammatory meds. To early to tell if you have Peyronies or not. Your symptoms are not conclusive enough for Peronies. But you definitely have something in progress that clearly hasn't been diagnosed yet. Penile fracture, UTI, prostate, etc. are all likey culprits.
Guys speaking of pain... I'm in pain for about 1.5 weeks.. my old plaque began to grow slightly and for the past few days the pain got bad - I had trouble falling asleep and it even woke me up at night...it's a mild to moderate sharp pain and is only in the flaccid state...I've been popping 600mg of ibuprofen once a day for the past 4 days...is it safe to do so? thanks
honestly the pain is pretty bad...my entire pelvic area is just a sore aching mess... I never had it so bad in 3.5 years... I wonder how long it's going to last but it had been like this for 4-5 days, with each day worse than the next.
Any tips on dealing with the inflammation aside from Motrin? It feels like there's a bullet hole wound inside my penis. Burning and aching..
i think ved pumping too hard causes me pain - ive benn pumping hard on the large cylindar as its the last 4 week of the protocol - so i will start from the beginning again and not pump so hard - i reckon its this that caused the pain plus stress at work.
Believer
I take 800mg of IB twice a day for arthritis and can take it three times if needed.
I have a Rx from my doctor but can buy it cheaper at Sam's OTC. ???
Jackp
Jack,
I heard that high doses of IB cause stomach bleeding. Are you taking any anti-ulcer meds as well?
In the time since my visit with the urologist I have considered the possibilities, and I am sure that I have Peyronies Disease. It is of no question. Now, considering I have a very early case of Peyronies Disease, I should get on medication right away to help stabilize and possibly reverse the effects. I should get on Pentox, right? How effective is vitamin E medication? Is it too soon to consider surgery?
Levine suggests Pentox 3x a day, 400IU. Also L-Arginine, 1000mg 2x day. Consider FastSize and/or VED. ASAP! Also consider making an appointment with Dr. Levine in Chicago or Dr. Lue in SanFran
Believer
My wife says I have a cast iron stomach. No I do not take anti ulcer meds I just have a snack or take it with meals.
richB
Vitamin E is an old treatment for peyronies. Mine started in 1995 and doctor put me on 400IU three times a day. I took it until Jan 2008 and only stopped because of heart meds. Helped me. Be careful at that dosage you bleed very easily.
Surgery is a last option. (been there done that) You are a long way from surgery there are many options to try first including the proper VED exercise in the Child Boards follow Old Mans instructions. Helped me lots!!! :)
Jackp
Hey guys, I've been working with Old Man on VED therapy and wanted to put my story out there as I believe we all need to participate. I'm 34 years old and started noticing pain towards the end of right corpora cavernosa, on the inside aspect of it early October 2008. It started with acute pain while erect. When I examined myself, I noticed that that side was a little firmer inside. I went to Dr. Gary Bellman, a Urologist in my city with suspicions of Peyronie's. He misdiagnosed me with Prostitus and put me on 500 mg of Cipro twice a day. Two weeks later I started noticing that the head of my penis was "tilting" a little bit to the right and indenting right below the glands on the bottom side. He examined me again and diagnosed me with Peyronie's. He put me on Transdermal Verapamil 15% Gel twice daily. Obviously, I was concerned with the timely treatment of this as I had read in many places that when treated early on, it can completely go away, hence me starting on everything I could to get resolution on the matter. Important to know that he had no idea what else to do about it and had no real knowledge of the problem. Most everything I learned, I learned through web research and this forum.
Upon finding out how expensive Verapamil was, I called and discussed the cost, effectiveness, etc. When I spoke with the rep at PDLabs, they told me it was actually good to continue in normal sexual function as the penis can use the extra blood flow, provided it is not at all aggressive. They seemed like good people and were very knowledgeable. The pain, which was slight, didn't interfere with my pleasure really and I could masturbate and have sex with mild discomfort. Was this wise? Also, what would be a basic regimen to start with regard to the following which I discovered might assist in the problem? VITAMIN E, POTABA, COLCHICINE, COLLAGENASE or NEPRINOL AFD. Would any of these treatments help? My fear was, that by doing nothing, the scar tissue would increase and so would the distortion.
FYI: I attribute the condition at my young age to my taking high doses of "Move Free" (Glucosamine Hydrochloride and Chondroitin Sulphate), past the recommended "loading phase" as the pamphlet given to me by PDLabs, points to this as a cause. I had been enjoying the effects of it in relation to my sports activities and had been taking the "loading phase" dosage for a couple months instead of tapering off. This coupled with long sessions of sex with a semi erect penis (was in a demanding sexual relationship with someone I wasn't into at all) created my Peyronies Disease in my opinion.
I found the "Dr." Herazy website (http://www.peyronies-disease-help.com/) and bought all his crap, spent like $300.00 only to realize that I'd pretty much been had. Who knows where this guy's heart is at- I just felt like it was all a bunch of BS, especially when I discovered Dr. Levine's findings on straightening out midsection Peyronie's distortions: Through stretching devices, one can bring the bend down to a minimum curvature. (Herazy says, over and over again that they are not worth trying and even hurtful, even while clinical trials prove otherwise).
After much research, I found a leading Doctor in LA, Martin Gelbard and saw him. He confirmed Peyronie's but said I might seriously be one of the 30 percenters in that I am young and could bounce back. This was about three months ago and while I am not worsening in regards to the distortion, I can feel the scar bigger, almost 50% bigger. I have uploaded some pics which might be viewable for awhile. Below, they show how I have worsened and maybe stabilized.
Important to note: I stopped doing a lot of dangerous things to my body as a result of this condition and decided early on that I would use this misfortune to my benefit and turn a lot of things in my life around. I quit smoking, quit drinking, and quit doing recreational drugs. I started eating right, working out. Finally manned up and asked my GF of 4 years to marry me. I am happier than I have ever been and I am a Peyronie's sufferer. This thing does not have to destroy your life. Most men have a very twisted view of what women really want. It is not some gigantic dick attached to some dude who can screw her all night. I WAS that guy for years and never found out what a great woman I had until my "wings were clipped" a little and I had to hunker down and get to what was real. I stopped cheating on her and let myself enter into a true, real, intimate relationship. I am kind of grateful in a weird way and I really don't think it would've happened if I hadn't contracted this condition.
I do want to say that I have chosen to keep my Peyronie's to myself. I keep my VED in my gym bag and my jock strap always right on top of it so she'll never pry any further than that, and if she does, I have it in the cool little bathroom bag it comes with. When you open it, there's a toothbrush and some stuff on top of it.
I get bummed when I look at my penis during sex and it affects my erection so I usually take half to a full Viagra about 20 min before we make love. I have completely changed my approach to my sexuality with regards to my fiancé. Whereas I used to be very graphic and "lights on" in my approach, I am now very much about the sensuality of the whole thing. Needless to say, she loves it and I can finally have an orgasm without having to do some kind of crazy pornographic crap to get where I need to be.
After a lot good advice from the fine people here, as well as a phone consultation with Dr. Levine ($150.00 well spent) and thousands of wasted dollars (Transdermal Verapamil among other things...) I use VED therapy every night and most of the time every morning as well. I take Cialis 2.5 one time daily for increased blood flow, 500 mg's of Pentox three times daily and 1000 mg's of L'Argenine twice daily. I take vitiman E as well for good measure and will be adding Neprinol per my last visit with Dr. Gelbard. He still feels I'll recover fully and while it's nice to hear, I am prepared for whatever.
You guys are all great and I appreciate your presence here- It's not only made my life bearable, I am realizing what it really means to be a man and finding true happiness in the process.
Thanks for listening,
G
(http://i4.photobucket.com/albums/y121/rayblanco/02-04-09_03-05-09.jpg)
(http://i4.photobucket.com/albums/y121/rayblanco/PD_Diagram_03-05-08.jpg)
Your story ought to be mandatory reading here. What an inspirational tale to hear!
You took a situation and learned and grew and that is the best that can come out of this.. no, even more - you are finding joy in life.
I am glad for you - not that you got this disease but that you found something deeper.
Tim
"In the middle of winter I at last discovered that there was in me an invincible summer." Albert Camus
ggg,
Bravo! I second Tim's remarks.
I have only one concern. To me, true intimacy requires honesty. I have to wonder how fair it is to either of you to hide this from someone that you are intimate enough with to "make love", marry, and possibly raise a family. Can you go into a lifelong relationship with a person you fear being totally honest with. What about telling her scares or concerns you?
Pentox works, congrats on your success story man! Stay on the pentox, the VED combined will help you gain and maintain size and straightening!!!!! Topical verapamil is a joke, it won't work, verpamil isn't even proven to help. When you go to the doctors they don't know what to do, only what they are taught in medical school. Stay close to this forum and enjoy yourself and your loved one! When I brought up my VED the resident and veteran doctor almost laughed me right out of the room!
Wish you the best of luck!
Comebackid
Quote from: ggg953 on March 15, 2009, 07:07:56 PMI use VED therapy every night and most of the time every morning as well. I take Cialis 2.5 one time daily for increased blood flow, 500 mg's of Pentox three times daily and 1000 mg's of L'Argenine twice daily. I take vitiman E as well for good measure and will be adding Neprinol per my last visit with Dr. Gelbard.
G, All this sounds "right on" to me with one exception. Neprinol? I found it quite useless and its extremely expensive. Additionally I don't see any way it can work in a pharmacological sense. Is Gelbard recommending it? - George
Thanks for the support guys.
With regard to the honesty issue: I get what you are saying Hawk and I appreciate an esteemed member of this forum like yourself finding time to respond to a nub like me- Thanks. That said, some stuff, for instance stuff concerning my fiance's privates, I consider "Lady Business". When she starts talking about it, I cringe. When she's on her period, I don't wanna know about it. I know some guys dig it but that's not me. Not interested in seeing her poo or pee either. When we use the restroom, the door gets shut. There must be a little romance and definitely a degree of mystery for me in all this. I don't want to know how her vagina works, just want it to work. Knowing her, and I know her well, she's only interested in "it" working. She knows something is going on with me but isn't really interested in my "Man stuff" and I get it... It is working and as long as it is, I don't really see any reason to point the whole thing out. I plan on full recovery and hopefully never having to get further into the issue with her. I never thought I'd ever say this about any woman, but she's really not that sexual and I'm grateful for it. She'd rather be held and cuddled with than get screwed. Kind of a nice change for right now. Works for me as I really am trying to find much more depth in this.
Gelbard suggested Neprinol and I guess at $89.00 a bottle it IS expensive but I'll guinea pig it for us all... We'll see. Thank god I'm off that Verapamil crap! I feel like I'm saving money at this point.
I promised Old Man I'd be available to all of you guys for questions re: VED therapy so let me know if anyone has any questions. I'm getting good at it and under his tutelage, I really see some light at the end if the tunnel.
Thanks again!
ggg593 - neprinol is the biggest waste of money - trust me - i spent 6 months on that crap and if i could meet the maker i would kick him in his nuts!!
Neprinol is actually a good supplement. It is actually manufactured in India and marketed in the US by Arthur Andrew. The big problem is that Arthur Andrew insists on allowing/promoting this supplement for things it is totally ineffective at treating. And, since I am sure that all this money isn't making its way back to India, I also pretty much suspect that Arthur Andrew is making a fortune in the process. Trust me, there are a lot of things that Neprinol is helpful for, but Peyronie's is NOT one of them. If you tell them that, they will just advise you to take more. I am really surprised that Dr Gelbard is recommending Neprinol now. This use to be Dr Herazy's franchise. - George
I wonder if the doctor is getting a kickback? I know with the therapist/doctor I see now he tells me that every week there is a new pharma rep in his office pushing a pill for him to give to his patients. He showed me his closet and hese got hundreds of packs of anti depressants and other drugs for free!
Notice how none of the other prominent urologists push neprinol . However many prominent urologists push pentox after Dr. Lue did his study, they generally support it.
Comebackid
When I talked to Levine on the phone consultation, he was stoked I was seeing Gelbard. He called him "Marty" and asked how he was... Doc Levine gave him two thumbs up... Who knows- I already bought it so I guess I'll take the stuff :/
I have been taking for the last 6 month 1600iu of Vit E (Boots) advised by a specialist. I also now over the last couple of weeks massgage my penis quite severe NOT masterbate to help clear the constriction. And by christ it works for me. I am a male again. Go for it it takes time and conviction.
G, Sure, go ahead and take it. It won't hurt you. The usual side effects are a lot of chest issues initially. You'll cough a lot of stuff out, it will really clean out your chest. Next will be joint pains. But after awhile this too will clear. I recommend starting slowly with Neprinol and then working up. And keep us posted. Who knows? Maybe Gelbard is on to something here. Maybe in conjunction with Pentox, etc. Neprinol is helpful. I couldn't wish for more! - George
Quote from: geff3 on March 20, 2009, 08:15:15 AM
I have been taking for the last 6 month 1600iu of Vit E (Boots) advised by a specialist. I also now over the last couple of weeks massgage my penis quite severe NOT masterbate to help clear the constriction. ...it works for me. I am a male again. Go for it it takes time and conviction.
Geff, Thanks for this report! Yes, many of us have found Vitamin E useful for Peyronie's. If I were you, I would also be taking some Vitamin K along with that amount of Vitamin E because you are otherwise risking potential bleeding issues. -George
Geff,
Just in case you didn't know, george says potential bleeding issues, because high doses of vitamin E acts as a blood thinner, significantly thinning it can cause problems for instance if you got a surgery with bleeding and healing. Thin blood doesn't clot as well, this can be dangerous for some people, and others it can be good if they are trying to thin their blood for some reason. Vitamin K will offset some of the thinning!
Comebackid
Is it possible to develop peyronie's disease from an injury to the suspensory ligament? Like, if the penis was bent all the way down? At the base of the penis?
I think it is possible. It may not lead to an obviously visible lesion, but to a change in length or erectile quality with a weird feeling at the base of the penis (I am speculating here). But I see no reason there wouldn't be a problem there when there could be one anywhere else. I also think that one - like any other injury to the penis - has to have a tendency to abnormal wound healing for such an injury to lead to a chronic problem.
Tim
Its possible, anything is possible. I think a lot of people men and women think you can just go in for rough sex and bend, pull, and do whatever to a penis, or engage in wild rough sex. I often times wondered since i sustained my peyronies disease from a sports injury, how many other men out there have ever got hit in a hockey game, baseball game, or any game really etc....
I also wonder how many men out there in the world were engaged in woman on top sex and the woman came down hard and the penis slips out and bends!
Comebackid
comeback - how come you dont use alc or larginine??
I intend to get on them both, havent gotten to the store yet to purchase them!
Comebackid
Quote from: ComeBacKid on March 23, 2009, 04:25:34 PM
I intend to get on them both, havent gotten to the store yet to purchase them!
Comebackid
i seriously believe that ALC helps in reducing pain - my delivery just came yesterday from the USA and I immediately took 2 tablets and the pain that i was experiencing went away - could also be due to the fact that i have stopped using the large cylindar for ved - only using the small one now - so its thumbs up for ALC from my quarter
Quote from: Iceman on March 23, 2009, 10:05:17 PM
i seriously believe that ALC helps in reducing pain - my delivery just came yesterday from the USA and I immediately took 2 tablets and the pain that i was experiencing went away.
Pretty hard to imagine it would work within hours. It is not a painkiller, it is a supplement.
Are you using the three cylinder protocol from soma correct? I never really used the biggest cylinder, it was just almost to big. The A cylinder was to tight, but I liked working with the B cylinder, always got a good solid stretch from this one. Used the A cylinder only a couple of times, then just stopped using it and substituted the B cylinder anywhere it called for the C. I still saw size gain and bigger thick erections.
Comebackid
Hawk -
I experienced a similar effect from Pentox. I know it's not a supplement, that it's an actual drug, but I could FEEL the pain subsiding (and still can when I'm having inflammation flareups) within an hour of taking it.
Heck, even if the supplement pain reduction is a placebo effect, the suspension of pain is important in and of itself, regardless of the improbability!
Quote from: ComeBacKid on March 23, 2009, 12:56:52 AM
Its possible, anything is possible. I think a lot of people men and women think you can just go in for rough sex and bend, pull, and do whatever to a penis, or engage in wild rough sex. I often times wondered since i sustained my peyronies disease from a sports injury, how many other men out there have ever got hit in a hockey game, baseball game, or any game really etc....
I also wonder how many men out there in the world were engaged in woman on top sex and the woman came down hard and the penis slips out and bends!
Comebackid
Im convinced my condition came from too much masturbation or rather not being gentle enough. Growing up a I noticed that my penis curve gradually got worse and eventually it was only comfortable to use that hand.
Thousands of members here got worse while taking ALC! Some taking pretty high doses of ALC. Probably just coincidence you feel better. The fact that you are still on this board says you are not feeling ''cured."
Comebackid
[/quote]
i seriously believe that ALC helps in reducing pain - my delivery just came yesterday from the USA and I immediately took 2 tablets and the pain that i was experiencing went away - could also be due to the fact that i have stopped using the large cylindar for ved - only using the small one now - so its thumbs up for ALC from my quarter
[/quote]
Quote from: McBaba on March 29, 2009, 04:29:04 PM
Thousands of members here got worse while taking ALC! Some taking pretty high doses of ALC.
Clearly you are uniformed and enjoy throwing out "facts" you know nothing about, or you are just a prankster one mouse click from being put out of our misery.
McBaba,
Thats not my quote, I believe Iceman is the one who quoted that.
Comebackid
Hawk:
Why wait any longer, click the mouse!!!!
Old Man
Hm, I remember I guy who posted similar comments some 2 or 3 months ago... >:(
didi
It seems like McBaba is a reincarnation of that guy that kept calling us wimps for not forming an advocation group like prostate and breast cancer groups have.
Don't feed the trolls. Your comments, especially negative ones, are what he's after. I hope Hawk deletes all this counter-productive posting.
Well, went back to the uro last monday. He said he didn't believe I had any permanent physical problem (such as Peyronie's) causing my pain or ED.
He believes that I had an infection, which was cured when I took cipro, but the inflammation stayed because that part of my body is constantly in use. It made a lot of sense. He said the inflammation can stay for a long time, possibly months. Since I have yet to try completely stopping my sexual activity for more than a couple of days I will try and stop things for a good week or two and see how things go. I told the doc about the pain actually leaving during erection, and he said that sounds a lot like inflammation. Inflammation can do some weird things, so I am going to wait to see what is up in the coming weeks/months so I can find out if I need to put this behind me.
Things still don't feel the same sexually, but everything is pretty much back up to par in that department anyway. I am hoping things return to 100% normalcy in some amount of time. If not I could just go out and buy some horny goat weed or something.
Quote from: richB on March 30, 2009, 02:31:17 PM
Well, went back to the uro last monday. He said he didn't believe I had any permanent physical problem (such as Peyronie's) causing my pain or ED.
He believes that I had an infection, which was cured when I took cipro, but the inflammation stayed because that part of my body is constantly in use. It made a lot of sense. He said the inflammation can stay for a long time, possibly months. Since I have yet to try completely stopping my sexual activity for more than a couple of days I will try and stop things for a good week or two and see how things go.
I'd definitely say that sexuality activity in the early days of peyronies can be a bad idea. Anything that causes more pain and inflammation is surely a no-no. One area I'm unsure of though is in maintaining regular erections. It appears to be a given that achieving regular erections is a good idea for penile health, but if pain is present too, I wonder if the regular erections can actually contribution to the continuation of inflammation. Conversely, maybe it actually helps to get blood to the area, stretch developing scar tissue and improve the condition. It's something of a maze and hard to know how to approach as there arenot many tried and tested paths or comparisons that can be made.
As you state, your condition may not be peyronies, and it's still early days. If your shoes, I'd get on trental, vit e , vit d and ALC though. Better safe than sorry.
Again, it'd be good to get feedback on my thought in paragraph one from other members.
I wonder if I'm the only one who's Peyronies Disease keeps playing games. Over the course of the last 3.5 years, it has been shifting from acute to chronic and back again several times. However, during the last 6 months, I barely had a chance to breathe. Every two weeks I am in pain. Last two weeks I was enjoying peace, but yesterday I woke up with pain emanating from one of my old plaques. My plaque runs along the shaft, and splits right and left near the head, wrapping around the shaft. It looks like this: ------{
The longer I wait, the more severe my Peyronies Disease gets. Not one doctor has a remedy for the pain. The inflammation usually lasts for two weeks at least. Today I was barely able to walk. It's a miserable feeling.
I've spent hundreds of $ on co-pays and deductibles to see doctors that can't do anything. At this point, if I consider surgery, grafting is the only possibility and with the complexity of my plaque it seems riskier than in most cases, where the plaque is a mere localized "pea".
This is frustrating. Does anyone share my experience?
P.S. Please do not suggest Pentox - I'm on it already.
Are you on Pentox?
I'm having the same problem of flareups, though mine are 1-2 days a month or thereabouts. Pentox really helps mitigate the pain. I'd say 8 times out of 10 a Pentox allays the pain within an hour, and at least helps lessen it if I'm left still hurting.
My uro was reluctant to write me an Rx for Pentox, but after a few visits to build a rapport with him I hit him with printouts of the studies listed here -- he heard me out after the second visit - but on the third, when I pressed the issue, he agreed that it could help.
Am I the only one?
I'm on all Herbs/Meds mentioned in the forum (ALC, Potaba, VitE, VitD, K2, L-Arginine, Pentox, ...) and still getting worse and worse month after month. Even the VED seems to make things worse in my case. First there was only one nodule on top 9 years before, now my whole penis is affected. A string of nodules runs from the top to the base of the penis and plaque is spreading out to the sides. It even extended into the body and made my corporas smaller. The worst thing is that the tunica seems to more and more convert into unelastic tissue. Even the last healthy areas are now affected and begin to contract. The penis feels like it got a "rough" surface. I guess its the scaring process that made the smooth tunica into this. I'm not sure what to do in my case. Erections get more and more difficult.
My problem is not a bend my problem is the shrinkage and the overall conversion of the tunica into unelastic tissue. In flaccid state my penis contracts a lot which is kind of stressing me. The penis feels hard in flaccid state instead soft. After a VED session it doesnt take long and the penis contracts again. I have pain even in flaccid state and that after 9 years into this hell of a disease!
I'm at a point now where surgery seems the only way to get any better. Grafting surgery seems to be problematic when large areas of the tunica have to be cut out and I can't find anyone who made it with large grafts that would cover 2/3 of the penis. The results of such surgery would be interesting. An implant may be a solution for me.
In my opinion the Peyronies Disease progressed because I was long time able to have very strong erections. I'm 33 years old and that could have contributed to my worsening. Is there anybody who has similar experiences? Especially the contracting/scaring of the tunica along the whole penis?
Believer,
In this case, I am glad I do NOT feel your pain. But I can imagine it, and it makes me sad to hear of your suffering.
It makes me wonder if there is another "axis" that is involved in your Peyronie's. It seems progressive and fairly aggresive - and also it seems to be associated with a LOT of pain, which is unusual, IMO. Pain is seen early on sometimes, and for me, there is pain with very hard erections. But it seems like there is a very strong inflammatory component that you get that others do not get (at least not for so long).
That, in turn, makes me wonder if you might be "different" somehow. Could you have a rheumatologic disorder that creates a far higher degree of inflammation than oterhs get. If so, that might suggest a different treatmnet course for you to take. For instance, colchicine, which is sometimes used in rheumatologic disorders has been shown to help some men with Peyronie's. Like many treatments, it doesn't help everyone, and so it is a "second choice" for many urologists. But it might be of help to you. Similarly, anti-autoimmune drugs might be worth using.
Perhaps it would be worth while for you to see a rheumatologist. There are HLA type II antigens (HLA-DQ5) associated with Peyronie's (though not terribly strongly), and this might be worth telling the rheumatologist about, and then testing for specifically. Here is a reference from google searching:
http://www.medscape.com/medline/abstract/8808864
It might be a long-shot, but what you are going through no man should have to suffer through at all.
Tim
gerMike,
My disease is sort of like yours, but without pain (or very much) and I am able to get very functional erections (better) with Cialis.
I may misunderstand, or you may have mistyped.. you said:
"the Peyronies Disease progressed because I was long time able to have very strong erections."
Did you mean ".. I was long time UNable to have very strong erections."??
Having strong erections seems usually to help protect against injury to the penis.
If you search my posts you can find a reference that includes a picture of a major reconstruction of a densely fibrotic penis - that includes an implant. It sounds like you ahve progressive generalized fibrosis - have you had your testosterone level checked, and corrected if it is low?
Tim
I was able to have strong erections a long time while having this disease. It was like everytime I had a strong erection that I noticed new nodules or new changes in the penis 2-3 days after that. I suppose it was pressing new blood into the diseased area that then inflamed the area again and formed new nodules.
Earlier the tunica was healthy even with the nodules here and there. But recently there is in fact something like generalized fibrosis of the penis. That would explain it. My testostereon levels are kind of low (248ng/dl measured last month). Though my doc said its in the limits and I need no help :-[ For quite some time I suspected that the low testos does make the overall condition even worse.
Btw. I have pain in my left leg (like burning from time to time) and penis in flaccid state. Maybe its some autoimmune symptome like the one you mentioned for Believer.
Do you think raisening my testos level can help reduce the fibrosis?
gerMike
Your doctor is wrong your testosterone is LOW. You need the following checked.
Testosterone Total
Testosterone Free
Testosterone, Bioavailable
SHBG
Albumin, Serum
E2 Sensitive for Males
Your Free and Bioavailable should be at least 65% of the range. They are more important than the Total. According to my doctor who is a Male Sexual Function Specialist. Doctors that only check total are not up on proper testosterone therapy. Always get a copy of the lab report for yourself.
In my case getting the testosterone level up helped libido, etc it did not help fibrosis.
Jackp
Your case highlights once again how this disease can be very complex and defy generally accepted idea. In a post earlier, I pondered whether hard erections are always a positive thing during stages of inflammation. My belief is that generally speaking they are, and you you are un just unlucky, but who knows.
It sounds to me that your case possibly extends beyond typical peyronies inflammation, so it'd no doubt difficult to get the inflammation under control. It might be worth going for a blood test, to try to gain insights into your condition or see if there is anything unusual.
In my last blood test the CK (Creatinkinase) was at 445 instead max 190. This suggests some sort of muscle degradation somewhere in the body (hopefully no smooth muscle!). The CK value was also around 380 some months ago. The other deviation from normal was found in my TSH value that was at 5. But I doubt there is any relation. Vitamin D levels were not checked but will be checked at 15. April. All other blood values were in the range of normal limits beside the Testos mentioned and the stress hormone Cortisol that was over max. With this disease it gets sometimes difficult to control the stress.
Could be autoimmune disease (or rheumatologic disorder), meaning that the penis is but one symptom of the problem. I'd dig deeper - perhaps that CPK is quite important. Treating T might help too, though the 200's should be good enough to prevent fibrosis (I base that statement on very little data - one animal study that castrated something (rats? rabbits?) and then saw that there was generalized corporal fibrosis, that was prevented (and to an extent reversed) by testosterone therapy.
Tim
Quote from: Hawk on March 29, 2009, 10:39:07 PM
Quote from: McBaba on March 29, 2009, 04:29:04 PM
Thousands of members here got worse while taking ALC! Some taking pretty high doses of ALC.
Clearly you are uniformed and enjoy throwing out "facts" you know nothing about, or you are just a prankster one mouse click from being put out of our misery.
Modified..., see above post of mine
Logic alone disproves the statement that thousands of people here have got worse taking ALC. Furthermore, you appear to be infering that ALC is causing the worsening of the condition. Agaiin there is no evidence whatsoever to support that. If you are not suggesting that, then what are you actually trying to say? It's time to stop trolling the board I think. It doesn't help anyone.
Quote from: Hawk on March 29, 2009, 10:39:07 PM
Quote from: McBaba on March 29, 2009, 04:29:04 PM
Thousands of members here got worse while taking ALC! Some taking pretty high doses of ALC.
Clearly you are uniformed and enjoy throwing out "facts" you know nothing about, or you are just a prankster one mouse click from being put out of our misery.
"I'm on all Herbs/Meds mentioned in the forum (ALC, Potaba, VitE, VitD, K2, L-Arginine, Pentox, ...) and still getting worse and worse month after month"...
Above posted by gerMike on March 31, 2009.
...................
"PLC and ALC did not help me (I got worse while doing both in high doses)"
Above posted by Tim468 on January 31, 2008
...................
"There are likely hundreds of posts dealing with the terms ALC or Acetyl L-Carnatine, or Carnatine. There have been no accounts of any correction of deformity."
Above quote is by Hawk posted on March 24, 2009 in Oral Treatments-Vitamins, Prescriptions, Herbs, Supplements
There is credence to Baba's statement that people do get worse while taking (ALC) even in high dose. Hawk you own posts back him up.
I don't have time to key word search (worse, ALC) to see if Baba's claim, "thousands have stated they got worse." is more accurate than your claim, "hundreds of posters get no benefit." But I would say "a great deal" of people here get worse taking (ALC). And "here" i.e. this board is just a small sampling of the millions of people with peyronies.
The new members here seem to be taking a different approach to addressing peyronies and that includes speaking the brutal truth sometimes. Respect others statements Hawk and careful with that dictator/administrator attitude.
Quote from: newguy on March 31, 2009, 10:04:19 PM
Logic alone disproves the statement that thousands of people here have got worse taking ALC. Furthermore, you appear to be infering that ALC is causing the worsening of the condition. Agaiin there is no evidence whatsoever to support that. If you are not suggesting that, then what are you actually trying to say? It's time to stop trolling the board I think. It doesn't help anyone.
Newguy wrote, "you appear to be infering that ALC is causing the worsening of the condition."
Dear Newguy, I am rightly stating that "many people do not improve but in fact get worse" while taking ALC. Not stating that ALC causes things to get worse, but it just don't help at all. Brutal truth backed up by the posters I quoted.
I would say don't waste your money on ALC. Sadly I offer no alternative to it.
Tim
"one animal study that castrated something (rats? rabbits?) and then saw that there was generalized corporal fibrosis, that was prevented (and to an extent reversed) by testosterone therapy."
I humbly disagree. A human study "me". I was on testosterone therapy before and at the onset of corporal fibrosis. I was on TRT long before the corporal fibrosis and even more after the diagnosis. TRT was a great help with a lot of things but not corporal fibrosis even at 2cc every 10 days. I'm no doctor but just my story.
Jackp
Tim,
Thanks for the suggestion, I'll see a rheumatologist asap.
I'm afraid to ultimately suffer the same outcome as gerMike. Like him, I will also probably need an unusually large graft if things further deteriorate. This is rather frightening... Perhaps Peyronies Disease is different in younger patients like myself.
Believer
jackP,
The study in question castrated the animals and documented that they showed a development of fibrosis. Since more than just testosterone is produced in the testes, they replaced the testosterone to see if that could prevent the fibrosis, and it did. That suggests that of all the different things produced in the testes, it was the testosterone that was the critical factor in the development of fibrosis. They then surmised that testosterone could "treat" the fibrosis.
The problem is that the use of exogenous testosterone was given from the start for the group of rabbits that were castrated and treated. Thus, the testosterone was used preventively, not in a rescue format. The other part of this is that the loss of testosterone in the castrated rabbits was obviously complete and not partial. Thus, the paper is tantalizing but incomplete. A better study would have treated rabbits after the time point that demonstrated fibrosis (in a separate group, since checking the tunica means killing the animal), and showing that there was less fibrosis in that group.
Tim
Does Peyronies Disease commonly cause irregularities in the flaccid penis as well?
Did with me, pool queue effect at end, curvature whilst flaccid, pinched appearance where plaque is, some shrinkage, change in hanging angle. One urologist discounted this saying that Peyronie's and it's treatment was only concerned with the physiology of the erect penis, and another more sympathetic urologist described the flaccid symptoms as "classic" Peyronies. However if you resolve the symptoms whilst erect I'm sure most if not all the flaccid ones would disappear too.
Quote from: mo on March 31, 2009, 10:09:02 PM
The new members here seem to be taking a different approach to addressing peyronies and that includes speaking the brutal truth sometimes. Respect others statements Hawk and careful with that dictator/administrator attitude.
Mo,
You are under Advisory Board consideration for being banned as we speak so you may never read this post. At any rate I am going to make this short and to the point. A membership vote would have you bounced out of here with overwhelming support so there is nothing dictatorial about it. Thousands of members appreciate and depend on the PDS. Clearly you do not so banning you will do you and us a favor.
okkkk one big question. we talked about this before and well its my big obviouse symptom so i just want to see how many people also have this symptom. for the first year or two of peyronies was your penis swollen. bigger then normal flacid and painful. i also want to ask if anyone had any differences urinating. after ejaculating etc..
One thing I like to throw out there is that there seems to be a prevalance of prostatitis type symptoms with Peyronie's disease suffererers. Whilst some maybe typical Prostatitis as a result of bacterial inflammation I suspect, and I'm not a doctor, that a lot are a result of the stress of the Peyronie's situation. The stress resulting in disfunction of the pelvic muscles and symptoms like painful ejaculation, painful urination etc.. With me, I'm now thinking that through my naivety the curvature which also displayed whilst flaccid, would effect the urine stream and ejaculations, resulting in a reluctance and fear when needing to relieve as a result of the anticipated pain. When in reality Peyronie's should not effect urine flow. It then becomes pain due to the disfunction and worse with the progress of time - a viscious circle. So that could be the connection between Peyronie's and CPPS (chronic pelvic pain syndrome). I'm a stressed person irrespective of the Peyronie's but I'm sure it has compounded my problems hugely.
I've had the scans, MRI, antibiotics, cystoscopy and all that is clear apart from the Peyronie's scar.
UK,
I think you are absolutely right! I developed typical prostatitis symptoms too when my peyronies started. I didn't know anything about CPPS at the time, but when I finally found out about it, I started to "listen" to what my body was telling me. I noticed that I was really stressed and in panic because of all the strange symptoms I had. I was cramped no matter what I was doing. When I had realized that I tried to relax my pelvic floor whenever I could and a lot of my symptoms vanished.
I think that there is a connection between the emotional stress caused by peyronies disease and CPPS symptoms!
Didi
Been thinking about this in the past few days. As one urologist who I talked to told me that my peyronies is not progressing, but healing. As the damaged tissue hardens that is the bodies mechanism for trying to heal the tissue, hence you get shrinking, hardening, and bending as in my case. Progression to me would mean spreading, although there is no way to measure this with no doppler ultra sound other than observation...
Comebackid
Comeback Kid - The inflammation stage is where the real damage is done. The scar tissue forming is what occurs when the inflammation subsides, and is when you pretty much become aware of what you're dealing with. Of course many people find themselves in seemingly endless cycles of inflammation and scarring hence why many are on elaborate concoctions to keep inflammation at may, and other techniques to re shape scars that may have formed.
I find myself in limbo at the moment with the scarring and healing progress at the forefront of my mind. I've suffered from peyronie's for about 14 years, but when I found this forum, used the VED and concentrated on good food and exercise there was definitely realimprovement. Unfortunately, a year ago I injured myself using a traction device (somehow??) and pain was present for many months. This scared me to death, but it seemed to subside eventually. Now however pain is back in the same area, so it makes me think that I have done more damage than I thought and I'm keeping a keen eye on any changes that occur. I'm hoping that a worsening of the situation isn't inevitable, but there's no way to dress up inflammation in a good light.
I'm worried that all of my progress could be reversed or worsened, and due to this pain, I keep having to put back in my mind the date when I think I'll be "out of the woods". It's disheartening and I'm avoiding the VED and traction device for now because I don't want to rock the boat. Hence no actual progress is possible right now. Pentox, vitamins, healthy eating and regular exercise are my current weapons of choice. That and regular erections to get blood into, and stretch out, the penis.
(continued from previous message)
So I find myself wondering what can I do during this inflammation and potential scaring process, other than what I'm already doing to limit any future damage. As already stated, part of me thinks, avoid ALL devices until the pain is unnoticable and then tentatively start with the VED. Another part of me see's reports of increased flacid length with light traction, and thinks, maybe if i do very light tractions it could limit the severity of the possible developing scar tissue.. Another poart of me think's that's a bad idea, or that VED use is safer and using that in a very limited and controlled manner could help me right now. There's no right or wrong answer and that's what's so frustrating.
There is currently no change in curvature since the pain started, so thats positive, but I do have the pain so I really want to be proactive if I do notice any physical changes at all. I feel that the least explored area on this site is what action to take during this stage of limbo. How to make the best of that situation before the scar has formed. It's a tough call, but in all likelyhood I'm going to have to play 'wait and see', then consider these options should I notice any physical changes over the coming months.
Was wondering if anyone could way in on something: When I was diagnosed with Peyronies Disease, Dr. Gelbard told me to stop smoking and I did, immediately. Recently, I have started using an E-cigarette http://en.wikipedia.org/wiki/E-cigarette. It doesn't smoke and vaporizes Nicotine. Anyone know how Nicotine affects Peyronie's if not smoked???
im a little confused - i have been pain free for almost 6 months and now almost on a daily basis I can feel a little tiny nodule on the right hand side of my shaft causing a pinched effect - what are the causes of this pain if i have been pain free - i am taking all the meds pentox etc plus ved usage - i feel that each time i use the ved there is a bit of pain - could this be a factor- what else are there??? - why is there pain one day and then pain free for say 2 days then pain again - help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
also has anyone seen this: http://vids.myspace.com/index.cfm?fuseaction=vids.individual&VideoID=33993662
Iceman - There's often no rhyme or reason to how these things pan out. If you feel pain with the VED I personally would give it a miss until the time resolved. Others may disgree though. There's no firm right or wrong answer for how to proceed. Be hankful that you're using pentox and other meds, because at least you're doing all that you can to minimise any negatives. As for the video, I get tired of these traction devices claiming to "cure" peyronies. I do believe that used in a very careful and gentle manner they can be useful, but it's certainly not a cure. Their desire to gain custom leads to such lofty claims.
ggg953 - First of all, congratulations for stopping smoking. It's a very unhealthy and damaging habit. Nicotene alone can cause problems, but I wouldn't like to make a statement as to whether or not it will worsen your situation. Nicotine can actually promote the growth of new blood vessels so although it's an addictive drug, if vaporised, I wouldn't want to state that it's entirely negative. I'd say that if smoked it's very bad as new blood vesell growth may promote tumor growth.
so basically there has been this vein like lump on the right side. When I do press on it, it seems like a vein. After intercourse I would say, the area becomes hardened, but then again the entire penis gets kinda hardened as well. I have made posts like this previously in this forum. A lot of people simply told me it was a minor problem and I should go on away with my happy life because after a few weeks it should disappear. However, in any case the vein-ish lump has definitely worsened (as in gotten bigger) and yes, there is a bend/curve when it is erect towards the left. Does anyone think this is peyronie's?
Exile999,
Is the lump on the same side as the curve? For example is the lump on say the left side, and is then bend/curve now also to the left?
the lump is on the right side, the bend is towards the left
I am a 22 year old male. Recently i have noticed several things wrong with my penis, in the flaccid, semi flaccid and somewhat during a full erection. First off I have been experience pain.discomfort on the left side of my penis which primarily resides on the top left and from what i feel at the very bottom (actually into my testicular region). When my penis is flaccid i notice it hangs/twist to the left more then what it used to and the left side at times feel "hard". Also my testicles seem to have taken on a new shape when my testicular sack shrinks. The left teste seems to be in front of the right, causing my testicles to look out of line compared to my penis at times. In addition, at the top of my penis right under the head on the left side there seems to be a knot/dent, very small in nature in the flaccid state. In the semi harden state is what concerns me most. The left side is no longer as "full" as the right and takes on a curved state to the left about half way up. A state to which i could not insert my penis into a vagina comfortably. The decrease in thickness takes place about a third of the way up. In the semi-flaccid state the dent/knot is more recognizable. Also in the semi-flaccid state on the right side (opposite to the bending) there is a vein like structure that is not hard but causes my uretha to have lumps that you can notice from the side if you look hard enough and from the touch. It feels like a small piece of thread tide across my uretha. Does this have anything to do with the bending? Finally when i am fully erect, and i do mean fully erect...everything seems to be normal. The dent is most obvious when fully erect and does cause my penis head to slant/twist to the left a little. Also it feels like the bottom left side of my penis stick out a lil more at the base. And I can tell that the left side is not quite as full causing a slight bending/twisting affect but it is definitely bearable, its one of those things where nobody would notice a difference atleast my girlfriend claims not to during sex. But i am very worried about the future after reading things online. I went to a urolgist how told me to take vitamin 8 400 u 2x a day. Which i am . But is the bending during the semi state a prelude to what is to come in the future for my fully erect penis. If my fully erect penis mirrored my semi erect penis i would not be able to have sex! Can someone give me a lil insight to what might be going on. My dr. said he was not quite sure after a brief look and said he barely felt anything but it might peyronie I almost want to show him pictures? can i do that?
Starting2looseHope:
Don't delay - see an expert urologist - peyroniesassociation.org/x.php?p=Physician_Finder
When you go for the appointment, bring pictures. Also, detail your symptoms.
If diagnosed with Peyronies Disease, you will have several treatment options. The earlier you start - the better.
Believer, Thanks for the website, however the only doctor close to me is backed up til july. so i opted to see a different doctor, one that has been in the practice for a while. He said i am in the early stages on peyronies since its mainly only shows when my erection is weak of only half erect. He told me to stop taking vitamin E 400 U two times a day due to the heart risk it has. He prescribed me colchicine .6 mg to take 3 times a day. He also said that after a week or two i can start taking IB Profen or Motrin with the colchicine. My question is has anyone taken this before and seen success? Should i stop taking the vitamin E like he says or should i take it also with the colchicine. He switched me to a multi vitamin that contains 60 u of vitamin E. Should i go ahead and start the motrin also now? Any ideas? Please help?...
Thanks again for everyone's posts, I saw a urologist today and he confirmed Peyronie's D.
However, and like someone else on the board, I'm feeling much better after my appointment.
I'll post my detailed history later in the appropriate section, but here's is a synopsis:
Last December 2008, I noticed a dent on the right side towards the top near the head, which caused the last couple of inches to bend upward somewhat...maybe 15 degrees?
It's still looks about the same.
However, in the meantime I found this board and started my research. I must admit, the board scared me to death...not at first, but my anxiety grew and grew. But, I began to take Vit E (GNC Isomer) and L-Arginine.
Anyway, my mind was very mixed up the last couple of weeks b/c of my thoughts about what I had, etc... It got to the point I couldn't get aroused.
Because of this forum, I anticipated that the uro I saw today may not be "up to speed" with this board, so I brought the info suggested...see child's board.
Ironically, and thankfully, one of the board's members called me today with a referral to a doctor in Atlanta that does a lot of work in the Peyronies Disease area; but, I had an appointment with a Dr. Schoborg already scheduled for this afternoon.
I saw Dr. Schoborg and he diagnosed me w/ Peyronies Disease immediately. He felt some scar tissue near the place where I have the dent. He was very honest and truthful...he did say he'd seen "hundreds" of guys with Peyronies Disease (so, we're not alone). However, he said there was not much successful treatment for the condition. He said since I don't have any pain or severe bending, to just watch it.
He said he had done everything from surgery, tv, injections, vitamin E, potaba, etc. and he didn't really notice much of a pattern of success, except that one guy was "cured" w/ potaba...but, he felt like most patients just quit taking it b/c it required 6 pills a day and he thinks most guys just quit.
But, I showed him Dr. Lue's article about Pentox, and he immediately said he knew of Dr. Lue and respected him very much. He said he had never prescribed Pentox and did not feel comfortable doing so; but, he referred my to another Doctor at Emory who he said is doing a lot of work in this area, and is more "aggressive" in his approach to Peyronies Disease. He referred me to Dr. Chad Ritenour, and said he would more than likely feel comfortable prescribing the Pentox.
Ironically, this is the same Dr. that one of our board members referred me to earlier in the day. So, I'll go ahead and make an appointment to see him.
So, at this point I feel pretty blessed because the shape is not bad at all, at this point I have not experienced any pain, and it looks almost exactly like it did over 4 months ago.
The palpable test was more "rigourous" than I expected, he really pushed and squeezed. He felt it right away in the spot.
I'll update later, or keep asking questions.
-Cowboyfood
How much vitamin E and L-arginine take? I currently take 800 u a day of vitamin e and .6mg of colchicine...think it would be smart to add the l'arginine also?
after 2 months of hope (no pain, good erections, one plaque that seemed nearly vanished) things start getting worse again. pain is back and the head of my penis starts bending to the left (I had no bend at all until now). :'(
I have been taking pentox for eight months now and I thought it worked... I think I will stop taking it. I don't want to take pills for the rest of my life. It doesn't make any sense. I have to realise now that I am not one of the guys who get better and not even one of those with stable peyronies.
I am really frustrated!!!
sorry to here about your frustration!
but, and I may be wrong, your "shape" is fine, regardless of the slight bend, so maybe that's okay.
I feel your frustration though.
didi20031 - I'm very sorry to hear about these developments. In your shoes I would stay on the pentox for now, even if it isn't working quite how you'd hoped. We can be all that certain that it isn't having a negative impact, but it likely is having some positive effects even if they are not immediately apparent. Maybe the bend would've been worse without pentox. Who can tell? It's a safe drug compared to most so I wouldn't worry about being on it for an extended period of time. If anything it's probably improved your general health.
Have you started using the VED yet? Maybe that would be a proactive step to take at this time. Again, I'm sorry that you are feeling down. Know that people here do care about what has happened, and lets hope that it stabalises soon, or is just a blip that can be overcome in time by current treatments, or ones on the horizon.
thanks for your comments, guys!
anyway, I don't know what I should do. keep on fighting? for what? I stopped having sex since I am always afraid about pain and ED. I lost most of my libido and especially the feeling in penis has changed so much... it seemed to get better some two months ago, but that was an illusion!
didi
didi,
With all respect, what you are proposing does not make sense to me. You have real improvement (and who knows if you might have been WORSE without the Pentox) and now, when you have a setback - you are ready to completely give up!
Why do you say that the improvement is an "illusion", when you have documented real improvements here?
The fact is, if you want a penis that works, you may HAVE to take pills your whole life, or do the VED, or take Cialis, or something that you don't want to do. The point is, you are going to have to try to solve your problem instead of simply wishing it would go away, or wishing that your idea of a sex life would go away. It's hard. It takes work. It can be discouraging. But a great deal of what you say that you have lost, seems to be because of what is going on between your ears, not between your legs.
I say this not to be hard on you, but to remind you that you are not alone. I have struggled with Peyronie's since I was 21 (now 54), and at times was very discouraged. But I finally realized that I had to try to DO something, rather than simply fretting that my life was over. When I accepted that my penis no longer looked the way I wanted it to look; when I accepted that it did not always work the way I wanted it to work; and when I accepted that it did not always feel the way I wanted it to feel - only then was I able to enjoy what I had. And that is a process of acceptance that I have to repeat sometimes, because my disease has gradually progressed over time.
Reality means not just accepting what we have lost, but also to remember what we still have. I sincerely hope that you will "get" this concept, for then it might allow you and some of the other young men who have come through here worried that their life is "over" to move ahead to a happier place.
Tim
I woke up today with a significant reduction in curvature and a somewhat return to normalcy. Wow. I never thought this would happen. Although now I have a slight upward curve I can deal with. I'll take what I can get!
RichB, What do you think is the reason for your reduction in curve? Luck? Or treatment?
I have posted on here and a couple other sites about what I am experiencing and I am wondering if anyone else is going through the same thing. My curve is significantly worse while becoming erect. Also I can not achieve an erection straight enough for sex without sort of helping it along with my hand or high stimulation. But once i have helped it along and am fully erect there is only a slight bend where the peyronies lump is, which is on the left side under my penis head. So basically i go from a curve while becoming erect, or have what i call a "weak" erection....to a bend at the top of my penis under the head head...which has caused the head to be unsymmectrical but that is about it...anyone experienced this also?....other things i notice to be a little different is that the left side (the side with the bend) does not seem to be as thick...and this might sound weird but i feel like my testicals and sack have kinda shifted??? i dk?
Starting2looseHope,
Hey man my condition is almost word for word exactly what you described, on the left side and even the ball shifting. Mine is also a bend when i have the 3/4th erections and goes into a bend under the head when fully erect. Do you ever fell like there is more blood flowing to the right side? Or that you can "flex" the right side connector muscle better?
I started having problems with my balls after a bout with Peyronies Disease, too -- it's my opinion (and it's just that - an uneducated opinion) that perhaps since the "root" of the penis goes into the body beyond what you can see sticking out, there may be scarring taking place where it cannot be seen, but can affect the testicles.
Don't know how much validity there is to this line of thinking, but I've been pondering that there might be some connection. I thought maybe it was ME - but I guess I'm not the only one who's had issues with this.
mine kill as well - just another pleasurable component of this disease - gotta love it
Quote from: tke1058 on May 18, 2009, 04:24:43 PM
Starting2looseHope,
Hey man my condition is almost word for word exactly what you described, on the left side and even the ball shifting. Mine is also a bend when i have the 3/4th erections and goes into a bend under the head when fully erect. Do you ever fell like there is more blood flowing to the right side? Or that you can "flex" the right side connector muscle better?
TKe, Yes it feels like the right side feels up a lot more then the left. I feel like if the left was pumping more blood it would straighten out possibly. Have you been to a doctor or talked to a uro? If so what did they say? Whats meds/therapy are you doing? I would like to talk more.
This is my first post here.
I am pretty pissed off, about a week ago I went to see a Urologist thinking I had cancer and was told that I have Peyronies. While it's technically better than cancer, the way he described it to me made it sound pretty hopeless. He said he has seen a lot of men with it, that they're not entirely sure how it happens besides injury or some medications (one of which I take for my heart), and that there's not much he can do about it.
Now, my complaints to him was that I had a small BB sized bump on the left side of the head, right below the side ridge. When flaccid, it's a hard bump, when hard it dips in and feels like a small melon ball scoop thing took out some flesh. I've noticed more of a bend to the left, nothing up though. I also have a LOT of pain.
I am getting so depressed about this because I'm 29 years old and now I've got this disease which sounds permanent. I'm terrified that any sexual activity w/my girlfriend will result in more damage. I take inderal for my heart but have been unable to get in to see my cardiologist. I'm really pissed off that I was not warned about Inderal, my doctor knew I was very medicine phobic and he never once mentioned that there is a link with Inderal and Peyronies. When I have been active with my girlfriend, it is so damn painful that it's hard to enjoy much of anything.
Is the pain going to continue like this? What can I do to prevent it from getting worse? I'm really scared that for the rest of my life my penis is going to be disfigured and disfunctional due to the pain. :(
Necros - While peyronies tends to occur in older individuals, there are a number of young guys with the disorder. It's obviously no fun at any time in life, but there are no doubt challenges to finding out that you have peyronies at a young age. I'm around your age and I can certainly say that it has altered the path my life would've otherwise taken. I don't want to talk about it in sense of "good" or "bad" because in some ways it has made me a better person, but it can be a heavy load to carry and make no mistake, that my ideal scenario would be to be cured of this dreadful problem. That being said, I have seen cancer and the harm it does, and I'd rather have peyronies anyday.
There is no magic solution to peyronie's but there are tried and tested treatments that can help, and in some individuals can make a significant difference if you stick with them. You should see a recognised expert in peyronies and get on TRENTAL as soon as possible. It's no miracle cure, but has been shown to be of benefit to some people when taken over a long period. Taking vitamin D may also be of help to you, as maybe people are deficient in it (especially those with health issues). It has been shown to reduce inflammations somewhat. There are other oral options that may help to a lesser extent. When the pain is eventually reduced you may want to explore other options such as the VED (more info elsewhere on this board), and possibly very light traction once your condition is stable.
The good news for you is that in most individuals the pain does eventally go away. It can remain for quite some time though. It all depends on the individual, and isn't something that's totally under your control. It's possible that a medication may have caused your condition, but I'm not sure that its certain. It may be that you are predisposed to develop this condition when a slight injury occured. To be honest there's a lot we don't know about this condition, and from being on this forum for years now, I feel that there may even be different conditions within the peyronies umbrella. Some of which are primarily ongoing autoimmune disorders, and others which are similiar but primarily linked to an initial trauma which is sufficient enough to lead to these problems.
There are potential treatments in the pipeline such as xiaflex, but the jury is out on that one. It's best to make the most of what is currently available to us and keep an eye on medical advancements. Some peoples conditions resolve themselves, though I believe that they are in the (vast) minority. The majority of people do eventually stabalise though, and at that point you still have the VED and traction, so at least you can ALWAYS be proactive. I've reached a point where i don't give myself too much of a hard time because I know I'm doing all that I can, though of course I have my down days. It's perfectly understandable that you feel very down about this. This community is here for you through the good times and the bad.
Pain very seldom lasts more than 18 months, usually 6 - 18 months with those that even get pain.
There is a fair amount of reporting of pain reduction on the forum with 3000mg of Acetyl L-Carnitine which is an over the counter supplement. Price varies widely so do some shopping.
Also to get up to speed on Peyronies Disease I suggest you read the Read Only "Child Board" portion of the forum. While it looks like the this area (main discussion forum) it is the highlights of past posts. It is entitled Newly Diagnosed Highlights.
https://www.peyroniesforum.net/index.php/board,18.0.html
Quote from: Hawk on May 26, 2009, 12:33:11 PM
Pain very seldom lasts more than 18 months, usually 6 - 18 months with those that even get pain.
Yes, I noticed pretty much the same thing when reading through the histories board. I found it quite shocking that the actual curvature happened with so many people literally overnight. In others it was more of a gradual process. Do you think this is indicative of a slightly different process/condition at work? Why else would there be a stark difference in the onset of physical deformity?
Out of curiosity hawk, if you put the typical pain timescale from 6 - 18 months, where would you place the typical deformity timescale?
I want some advice. Do you guys think that verpamil injections have a higher chance of working if my injury only occurred 4wks ago? My "plaque" is on the top of my penis below the head and wraps around the left side. The bending is something I can live with, the pain is something I can not live with. I just hope that nothing gets worse and the pain subsides. And I pray that my doctor knows what he is talking about in recommending I go through with these injections.
Quote from: alexk on June 10, 2009, 11:24:30 AM
In my case, I was 95% pain-free within one week of starting Pentox. I had discontinued Acetyl L-Carnitine months before because it was potentially interfering with my sleep.
alexk,
Did your uro prescribe pentox or do you get it online? My doctor will recommend nothing but vit. E. I've been in pain for over 3 years now..curvature appeared a little over 1 year ago and the pain subsided somewhat, but I still have pain most days. I've read many posts and articles elsewhere that note the 6 to 18 month timeframe for pain, but unfortunately my case is, I suppose, an exception to this "rule".
Fred
If peyronies is injury induced, do you think daily erections are helpful, hurtful, or neither? My erections are painful, but I am wondering if by getting them, i am encouraging healing of some sort. Injury happened a month ago.
I had this thought a while back, but everything seems to point towards the need for regular erections. Those recovering from penile operations are more prone to scarring and size reduction and longterm ED if they do not achieve regular erections. Healthy males of naturally achieve erections day and night too. In our case, erections may stretch existing scar tissue and help get blood to the injured area. Treatments that stretch the penis are useful (VED, traction) and as such I see no reason why natural erections should be any different. I think it'd be a bad move to attempt to reduce the number of erections achieved. Furthermore, stretching is thought to reduce TGF-beta1 levels which is a plus..
I certainly believe that erections are ALWAYS beneficial even if they come with pain. However, I believe that recurring pain in the flaccid state is NOT a good thing and should be challenged with anti-inflammatories. - George
Quote from: YoungOne on June 10, 2009, 12:52:29 PM
I want some advice. Do you guys think that verpamil injections have a higher chance of working if my injury only occurred 4wks ago?
Of course there are mixed thoughts on whether Verapamil injections work at all. But if they were to help you, then the sooner the better. The longer you wait, the longer plaque will stabilize or even calcify. And then Verapamil is less likely to work at all.
Les
Guys first, thanks for the responses and for the one PM with recommendations for drugs. I have spent my time since then in a pretty big stage of denial, as this is depressing the hell out of me. I feel like this is going to ruin my manhood for life. The guy who PMed me said that since I'm 29 this doesn't have to be a permanent problem, but there is no science I have ever heard of that managed to get scar tissue to go back to normal flesh.
I spoke with my cardiologist office, unfortunately the doctor who put me on beta blockers is no longer with the practice. Another doctor at the office said that he felt I didn't even need a beta blocker and that he could take me off which really pissed me off. He said I was on it for symptom relief primarily. That's not how it was relayed to me. I'm just really in a bad mood about all of this, because the same doctor also said he didn't think that Peyronies was caused by it, but then a few minutes later said he thought it was. I felt like he was trying to cover his ass legally at times. He said there are no peyronies specialist cardiologists, although that all cardiologists have patients with Peyronies. He said he wanted me to stay on the Inderal for now because I can't suddenly get off it, but said there were calcium channel blockers that could have a similar effect on my heart if we wanted to try those.
Here's the worst part. So I've been acting like this isn't happening, not even daring to be sexually active. I've just been in this major funk when I think about it or wake up with an erection and I'm in major pain. Well the pain has gotten even worse, and this morning I allowed myself to get erect only to notice that the hardened flesh seemed to have gotten BIGGER, and it is now visible from certain angles without even pulling on the skin. It serious looks like a damn chunk of my penis is missing. Well get this, when it goes limp the hardened tissue has gotten at least 2x as big. It was like a pea before in size, now it's twice as long doing along the shaft. So it's like two peas in length now.
What am I supposed to do. I see so many reports of vitamins and drugs and everything else, but it sounds like some of the drugs are not good with heart meds. Also, I feel very let down by my doctors as neither has given me any urgent advice on what to do. I'm just freaking out over here now, I feel like this is going to keep getting worse and worse, and it will not only ruin my sense of being a man but also my relationship with my girlfriend down the road. I would have never imagined in a million years I'd be dealing with something like this.
Necros - The plaque is an attempt by your body to heal itself following a bout of inflammation. It is healing in a way which is of course not pleasing from an aesthetic or functional point of view. Use of oral treatments such as pentoxifylline (trental) may be of help to you in reducing inflammation and/or reducing/reversing fibrosis somewhat. Here are good pentox resources to take to your doctor: https://www.peyroniesforum.net/index.php/topic,772.0.html
In additional to erections, Use of a VED (Vacuum Erection Devices) may help stretch the plaque. It's possible that use of these strategies may help your condition. Emerging treatments such as xiaflex breaks down collagen, so may be helpful where scar tissue is already present.
Sorry that you are going through a tough time with peyronie's. Mentally it is something can be extremely difficult to deal with. The way you're feeling is perfectly understandable.
A brief note about my progress.
Initially last December, I noticed my penis had an upward bend of about 20 - 25 degrees beginning from about an inch or so below the glans. I realized soon after that there was a dent in my penis on the top/right side of my penis, slightly diagonal going from the right side downward to the top side of my penis; kinda like this: "/"
I didn't think much of it...then I started researching and found this site in January...I started reading posts...the more I read the more alarmed, concerned, anxious, and fearful I became. I scheduled a uro appt for mid April. I started taking pictures of my penis. Then one evening in April before my appointment I had some kind of mental meltdown...I was trying to get hard for a photo (while reading posts on the forum if you can believe that) and I couldn't get hard...I then realized that maybe I had ED and that I might have had it for a while...maybe psychologically related, but maybe physical also....In a nutshell, I quickly went into a great depression about how I had ED and Peyronies Disease...and that my life had been drastically altered.
It took me awhile to compose myself, and with the assurances of other forum members, my depression "lessened", but I was still very down, and I continued to suffer some anxiety attacks. In the meantime, I started taking Vitamin E and L-Arginine. Several weeks later, my Fitzz VED arrived. Also, I began taking ALC. Also, I took Cialis (about 7 - 10 mg every other day). The Cialis started to work and gave me back some erections. However, I think I went about 3 to 4 weeks without masturbating...I could not get sexually excited if you paid me.
Then, I had a second uro appointment; the doctor prescribed me Pentox and Viagra (25 mg daily)...this was a little over a month ago.
Over the next several weeks, my mind became more relaxed and depression gradually subsided. I even began to feel "shoots" of happiness. Also, I began to have consistent nocturnal erections, and began to have daytime erections. Additionally, I began to think about sex again.
For the last 2 -3 weeks, I've noticed that my erections have become, well, very, very awesome...a "10" on the erection scale, including nocturnal erections. This has made me feel basically normal again.
The dent looks like it's progressed some; sort of continuing to the left side, but not nearly as pronounced as the right side. But, overall, when I'm erect my penis does not look that deformed...I'd probably have to point it out to have another notice the dent.
I don't think I've lost much length or girth, if any. And, the upward bend does not bother me...it may even be an improvement???
One thing I've noticed over the last few weeks, since my erections have generally be very powerful, is that the "end" third of my penis feels a little different when I'm super erect...not painful...just a little different where the dent is...I don't think I'd even describe it as tender...just different...maybe others have the same sensation where their bend is...but, this is only when I'm super hard, which has been occurring more often than not lately. I guess I can "feel the bend."
In any event, I will consider a halting of or minimal progression a victory...I'm only beginning my fifth "official" week of the VED protocol (I think I spent 2 - 3 weeks practicing). But, I've learned that this may be a lifetime or significant amount of time treatment plan. Which is okay, since I'm pretty disciplined about it. Plus, I've learned more about my health in the last several months than I had the previous four decades.
CF
p.s. Also, I've been taking 2000IU of D3 for the last week..and believe it or not, during the apex of my mental meltdown I had to endure four law school final exams!!! Results came back a little over a week ago...I finished in the top 10% of my class, maintaining my top 10% gpa...unbelievable.
I first noticed a slight bending of me penis in about November of last year. I saw a urologist earlier this year and he confirmed Peyronies Disease. It (as I have posted in detail on the Urologist thread) was a very unsatisfactory experience. His only obvious concern was: "Could I still have intercourse?". He indicated that there was a 40% chance of "natural remission". I have to go back and see him in September. Well guys since then all I have done is take a daily dose of Vitamin E. All the other things/options mentioned on this forum seem unavailable to us Brits. In the last number of months I have noticed the bending get much worse. About a 45 degree bending upwards. Much of the inflammation pain has eased somewhat. However, an erection (only about 40% of what it was) feels very unnatural and very uncomfortable. Like trying to fill a bag with air and something is stopping it from doing so. So, far from seeing any improvement it seems to be getting worse! :'( Needless to say - my sex drive has taken a dive faster than a submarine! I can now honestly say that my "erect" penis is about 40% - 50% smaller - I have also noticed my flaccid penis is smaller. I thought it might be my imagination...but no. All very depressing. Any ideas? Comments? Suggestions? ??? Is the Vitamin E a complete waste of time?
Quote from: bertie67 on June 16, 2009, 06:33:34 AM
I first noticed a slight bending of me penis in about November of last year. I saw a urologist earlier this year and he confirmed Peyronies Disease. It (as I have posted in detail on the Urologist thread) was a very unsatisfactory experience. His only obvious concern was: "Could I still have intercourse?". He indicated that there was a 40% chance of "natural remission". I have to go back and see him in September. Well guys since then all I have done is take a daily dose of Vitamin E. All the other things/options mentioned on this forum seem unavailable to us Brits. In the last number of months I have noticed the bending get much worse. About a 45 degree bending upwards.
It is indeed difficult at first to find many treatments in the UK, and for some unknown reason they are often more expensive than in the US.
In your shoes, I'd stay on Vitamin E, but also add Vitamin D, Omega 3, Acetyl-L-Carnitine, L-Arginine and possibly Resveratrol and Pynogenol. All of these are available at Holland & Barrett. If you live in a city you're bound to have one closeby. You should also attempt to get on trental. Please ask your urologist it he is willing to prescribe this to you. Print off this evidence and take it to your urologist:
https://www.peyroniesforum.net/index.php/topic,772.0.html
Also, as your curve appears to be developing slowly you may benegit from VED use. Many others here have, but it's something that you have to stick with over the months, because improvement isn't always immediately apparent.
As a general question to all here, how do we explain the way in which some people experience curvature overnight, and in others it takes months to develop?
From what I have seen, there really is no good explanation. Mainly, when the disease happens overnight, it is because something may have triggered it, such as an injury. When a disease progresses over a long period of time, my guess would be that something is continuing to trigger it, probably caused by health problems.
Pentox may be a mild PDE inhibitor, but I wouldn't put it in the same class as Levitra, Cialis or Viagra. I never saw any benefits with my erections from Pentox, but it may be that what mild effects may have existed would have been mitigated by my growing ED problem due to Peyronies Disease.
And I think as far as scar tissue remodeling is concerned, scars do not always go away. I have stretch marks on my arms and legs from weight lifting in my younger years - these stretch marks are at least 10 years old, and though they are pigmented normally at this point, they are still present when my arm is extended. If your cells were capable of completely removing scar tissue, we wouldn't have lifelong scars.
That being said, I agree with alexk - pentox can help ameliorate some of the scar tissue, although I highly doubt that it would restore complete normalcy.
I personally believe that ALL fibrosis is reversible. Some types of fibrosis can be reversed now. Other types of fibrosis, such as Peyronie's are extremely slow to reverse, and those reversals are usually overwhelmed by ongoing fibrotic processes. But, due to the current effort to eradicate deadly fibrotic diseases that result in huge treatment costs, new medications are progressing through the pipeline and very likely at least some of those medications will prove effective in actually reversing Peyronie's. There are many on this forum who are extremely negative about this concept, but I am convinced that a turnaround in the effort to deal with Peyronie's is not too far off. The main difficulty in reversing Peyronie's is the fact that the TA has a very marginal blood supply and even Pentox can't completely deal with that. Most medications that are currently able to reverse fibrosis are extremely dependent on blood supply. Tissues that have more blood supply are much easier to treat than those tissues with more limited blood supply. But the meds continue to get dramatically better. - George
Keep in mind many things thought extremely impossible are now fully possible. I can't think of any examples pertaining to medicine but the example I can show you right now is sitting right in front of you.
Rich, Medical examples are numerous. But I can give you one right off. A few short years ago it was dogma in medical circles that heart damage was irreparable. And then they did a heart transplant in which they had to leave the old damaged heart in. When they eventually went back in to remove the damage heart, it was healed. All it needed was a rest. I'm not saying that the same thing would be true with the penis. ;D But it is indeed a case of the common wisdom amongst trained professionals being unreliable. The cures for all these maladies are out there, they just haven't been discovered yet. Thats why I despise the term "incurable". I don't believe a doctor should EVER tell his patient that their condition is "incurable". Instead they should tell them that "CURRENTLY there is no known EFFECTIVE treatment that can CURE their disease". These two statements are NOT the same and doctors need to understand that. It is part of treating patients humanely. - George
That reminds me of the artificial heart... my gosh, what a modern world we live in...
It's a good thing we can't have two penises, otherwise I think there'd be a lot of guys looking to get this procedure! Haha
Let me share with you another story. For years I suffered with a severe urethral stricture that had to be forcefully dilated every few months. I went to urologist after urologist searching for help. This included both rural doctors and big city doctors. They all told me my condition was without hope of a cure and that I was being a crybaby by not just accepting my condition and learning to live with it. I finally came to a point where I had given up hope. Then had to make an emergency visit to a rural urologist who I had seen numerous times in the past. When I got to his office, I found out that he was unavailable but a young, newly out of school urologist was filling in for him and would see me. When he looked over my chart he looked me in the eye and very directly asked me why on earth I had not gotten this problem fixed. I told him I had been repeatedly told that there was no medical treatment available for my condition. He then told me that a PERMANENT fix had been available for years and referred me to a medical center urologist who specialized in urinary strictures. That doctor told me I could get a permanent fix with a rigorous surgery or a temporary 5 year fix with a simple surgery. I opted for the 5 year fix. It lasted 20 years! At that point I went ahead and got the permanent fix and have had no problems since the initial surgery. I am relaying this because I find the finality with which doctors tell there patients these things to be appalling. They don't know of a fix, so they terrorize and intimidate their patients into submission instead of actually checking to see whether solutions might be available. They are loathe to refer to sub specialists and any request in that direction is taken as an insult to their professional status and expertise. Years later, nothing has changed. - George
Second try.....with attachment!
Hi, guys.
I saw my Uro yesterday and in preparation for the appointment I did a measured drawing. It worked great and my Uro requested to keep a copy so he could instruct others in this easy method of "tracking your progress". I wanted to share it with the forum. It is easy to do and it is something I plan to do regularly on a 4-week interval. If you have a left or right curvature you can do it as a visual record of your progress (I guess...good and bad progress). I am going to attach my drawing to this post and I will explain how I did it.
For those forum members with an up or down curvature....I apologize. This method will not work for you.
1). Tape a piece of clean paper to the edge of a countertop. If you are tall you can use a Kitchen or a Bathroom countertop (32" to 36" high). If you are shorter you may want to try a table (29 to 30" high). Using any measuring device you have, measure from the front edge of the paper to the length of your pre-peyronie's erection. (Mine was 7-1/4" to 7-1/2"). Draw a line across the middle of the page at this measure.
2). Lay your erect penis on the page (keep your body tight to the front edge of the countertop). Trace up both sides of your penis (from the base) to the point of your deviation. Stop. At this point, I un-taped the paper and moved it so I could lay the head of my penis (tip) against the measured line. I traced the outline of my penis head. At this point you need to "estimate/correct" for any loss of girth in your penis shaft and size of "head" (I have losses in both). In other words, I drew slightly outside the lines until I recognized my "old erect self". When you are happy with the drawing you can darken the lines with a felt marker. If you have a copy machine make several "record copies" of the drawing for future measures (and try to always keep one clean copy). If a copy machine is not available, you can retrace the base drawing each time using a window as a "light box". I dated my base drawing pre-Peyronie's symptoms 2/15/08.
3. Again, tape the drawing to the edge of the countertop. Lay your erect penis over the drawing with the base of your penis aligned with the base of the drawing. This time trace the entire outline of your penis. When you are done with the tracing darken the lines with a felt marker. Date the drawing with today's date. Mine is dated 6/15/09.
4. Previous case: I am an architect and I deal with drawing and "scale" every day. I have had a "slight" correction to my deviation. I noted/estimated my worst condition on the drawing as a dashed line and dated it 11/15/08. It is purely conjecture but I think I was conservative in the actual degree of correction. Using a 50-cent drug store protractor I laid-out the degrees showing a slight reduction in curvature.
How you track your progress:
5). Take a copy of your base drawing or start a new drawing by laying a new piece of paper over your completed drawing. Using a window lay the drawings over each other with the clean sheet on top (you can tape the papers to the glass). Trace the base drawing (center "straight" penis) with a marker as a solid line. Trace your previous Peyronies Disease penis drawing using a dashed line and date it with the date on the previous drawing.
6). You now have a drawing that shows your original erect penis and a dashed-line drawing showing your last trace. Now, tape the new drawing to the edge of the countertop and lay your erect penis over the drawing. Draw a solid line outline of your penis. Date it with the current date.
From this point forward, repeat, and you will have the following composite:
Dark line drawing of straight-erect penis (as you knew it!)
Dashed line (previous date) of previous record drawing.
Solid line drawing (trace of penis) of current condition.
Date the page.
Repeat in 4-weeks.
I hope this makes sense and I hope some of you find it an easy and useful tool.
JackieO
If the attachment doesn't work I will need someones help to get it properly posted!!
I know that nobody really knows much about this, as every case is different.
But, does anyone know if an injury to the upper tip of the penis or the bottom of the shaft is more likely to cause shortening?
shortening occurs because the tunica cannot expand in any area where elastic fiber is replaced with scar tissue (plaque). If the plaque is along one side, then one side is shortened and a curve or bend develops.
In regard to your question, I cannot stress enough that with Peyronies Disease, where your injury is does NOT determine where your scar tissue will grow. Peyronies Disease is like keliods to this extent. A person predisposed to keloids can get an infected hair follicle on the right side of his chest that sets off keloid scaring. The wound healing goes wild and he can end up with raised scaring extending across his entire chest. Uninjured tissue is over run with scar tissue!
If the area you injure is where the scar tissue remains then you do NOT have Peyronies Disease, you instead have normal wound healing because that is how a wound is supposed to heal. It may cause a deformity but it is a simple scar and not progressive. With Peyronies Disease you can injur the right side of your penis directly behind the head and while plaque will develop there, you my end up with your largest plaque on the left side at the base of the penis.
Shortening without a curve or bend, is caused by scar tissue that is distributed somewhat evenly throughout the penis (evenly distributed) so one side or area does not shorten MORE that the other side (top, bottom, etc.)
Thanks for the insight Hawk.
JackieO - Thanks very much for your detailed 'track your progress' post. It's a great way to tell if progress if being made!
@ Hawk:
I thought any physical change in the penis due to plaque/scar tissue was Peyronie's, whether it's localized to the area injured or has spread elsewhere or if it arises spontaneously (i.e. no recall of injury). If what you say is correct (I'm not disputing that) do you know of any resources that discuss normal wound healing in the penis in more detail? So far, my changes are localized to right where I was injured. I'm curious about how treatment regimens would differ for injury vs. Peyronie's disease as you have described. Essentially I would like to know more about this so I can discuss in more detail with my 2nd Uro appt. next week. I'm still going to ask about Pentox as many here have helpfully recommended. Thanks!
-Skjald
Update: I just found the "Defining Peyronie's thread." Will be doing some reading now. Thanks all!
I think it can become quite complex when we try to determine what is and what isn't peyronie's disease. For all intents and purposes if somebody injures their penis in any way, and curvature sets in then even if they don't strictly have peyronies disease, they will likely benefit from some of the treatments used here. I doubt even many urologists would even differentiate. I do think that people with the most rampant cases of peyronies do tend to react badly to treatments by injection etc though. That would make sense. The healing process gone haywire.
One thing I don't understand relates to the surgery procedures that some people here undergo. Surely surgery is very traumatic for the body. Part of me wonders why peyronie's patients don't develop massive inflammation and scarring due to the trauma of surgery. Surely in those cases healing has to take place, but typically it goes to plan. Why is this?
Skjaldborg, I basiclly agree with Newguy's assessment. IF you had a wound and it scarred at the wound site, that is just what is supposed to happen to a wound. In that event, I think some ot the treatments here would help and just as a scar from a skin wound fades in time, I think you could have reasonable expectations that a scar from a wound on you penis would do the same.
If however you developed plaque, which is a scar, on normal tissue with no signs of injury then that is Peyronies Disease and has the potential to develop elsewhere on normal tissue. Loosely defined, Peyronies Disease is a faulty wound healing process that forms scar tissue over normal tissue. It does not matter if it started without an injury or if an injury triggered wound healing that then spread beyond the wound and overran normal tissue.
In our Resource Library we have several articles on general principals of scarring that are technical but interesting especially along with the photos. They help me to grasp hypertropic scaring, keloids, and the aspects that Peyronies Disease share with these.
PS: Newguy: I too have often asked and never gotten a satisfying answer as to; how can a Peyronies Disease prone penis can be traumatized by surgery without devastating results?
Skjaldborg, Be sure to take the Pentox documents
HERE--> https://www.peyroniesforum.net/index.php/topic,772.0.html (https://www.peyroniesforum.net/index.php/topic,772.0.html)
AND
HERE-->https://www.peyroniesforum.net/index.php/topic,723.0.html (https://www.peyroniesforum.net/index.php/topic,723.0.html)
with you when you go to urologist. Most urologists are very skittish about Pentox. If you can give him copies of these documents, it may help.
- George
Hawk
Quote from: Hawk on June 22, 2009, 08:40:05 AM
PS: Newguy: I too have often asked and never gotten a satisfying answer as to; how can a Peyronies Disease prone penis can be traumatized by surgery without devastating results?
I do not know how to answer your question. After peyronies and all the side effects the most trauma to my penis was caused penile injections for ED. The corporal fibrosis made things worse.
Yes there is trauma to the penis because of implant surgery. Now 8 months post op there is no visible sign of trauma. The peyonies scar still remains. The only way you can tell I have an implant is if you felt the pump in my scrotum, If you saw me naked you would have no idea I had a problem.
The plus is a normal looking penis, normal sex and the most important I feel normal again.
I wish I had the answers to your question. These are just my results.
Jack
jackp - I think we're on a slightly different page here. I'm sure that most surgery is successful. The musing was related to how not all damage to the penis doesn't appear to be equal (meaning that in many peyronie's patients, any slight injury to the penis appears to kick start these inflammatory processes, but that typically does not appear to be true woth surgery - even in those very same people).
Glad to hear that your surgery went well for you!
Question - I was diagnosed with Peyronies Disease last summer ago, after noting a lump on the left side, and an indentation there when hard. Function is fine, but I am now getting an aching pain with erection these past few months. A new lump has formed on the right side, and the indentation is extending to that side. I saw a uro last fall, and am scheduled for a follow-up this October. We are "watching and waiting". I also have some BPH, and he seems more interested in that than the Peyronies Disease.
Should I go back sooner, or just keep watching and waiting?
miller798 - I recommend that you start on the PAV cocktail (pentoxifylline, l-arginine, viagra). Pentoxifylline has been demonstrated to be somewhat useful, and there is scientific sense to this combo. It has been used to good effect in rats with peyronie's like plaques, and in humans with priapism. Top urologists are aware of this approach and some of them essentially recommend it. I don't want to build it up be be the solution to all of your problems, because it likely isn't, but using the PAV cocktail along with a VED (vaccum erection device) is likely the best approach for you at this time, and potentially can make a real difference. In any case, it's much more proactive than your urologists "wait and see" approach. I'm not quite sure what he's waiting for.
The resource library has items that may be useful to take to your urologist: https://www.peyroniesforum.net/index.php/board,10.0.html
Hey guys, I've been "away" for awhile working on stuff but wanted everyone to know that I am actually seeing pretty decent results from the Neprinol. I am taking maximum dosage, 4 pills three times daily and the Dr. noticed shrinkage and softening of the plaque in my right Corpora Cavernosa. FYI: I'm on 1.5 daily Cialis as well as Pentox 3 X daily and L'Argenine.
ggg, Thanks for posting this. Yours is the first really credible report I have ever read attesting to the effectiveness of Neprinol. Please keep us informed on this. If this is actually working for you, I would like to see some public confirmation from your doctor. As you know, Neprinol is really expensive at $6 per day (yes that is $180 per month!). If it performs, of course, it is probably worth it, but I, for one, would need to see further evidence before sinking large sums of money into it. In any case, I certainly hope that it continues to work for you! And do keep us informed as to your progress! - George
Hi Everyone:
I am a new member to this forum. I am looking for advice/help here. Here is a brief history on my condition:
I had a penile injury 10 years ago which resulted in hour glass formation at the middle of my penis. I was 24 at that time. It healed on its own. However, 4 years ago, i managed to injure mjy penis again, in a 'cuddling' session with my girlfriend. I went to see urlogist and he prescribed me Patoba. After a year of taking it, my penis improved, however, not completely. He switched me to Pentox and i took it for a year. I noticied significant improvement in erection quality and hour glass minimized. However, last year fall, i managed to injure it again during pre intercourse. The injury wasn't bad, i went to see my urologist, however, he told me not to worry and keep taking pentox. I wanted a second opinion, so i used the benefit of my PPO insurance and went to see Dr. Sethi in walnut creek, ca. That was the worst experience ever. He asked me to erect the penis by self manipulation. He came in and checked the penis and said its pretty straight. He then used his hands and bent it in the middle to show me how it would be like when its peyronie's disease. I didn't feel any pain, but was not happy with what he did.
A few weeks later i started noticing a dent in the penis at the place the doctor bent it. I made an appt with Dr. Lue at UCSF and he performed ultrasound to find that there is a small plaque in that area. I explained to him what happened. However, he told me to forget it.
I would like to know if i can sue Dr. Sethi for unnecessary bending my penis and potentially causing injury.
Also, i am active in sports (running, swimming and biking) and want to know if anyone found the condition getting worsened because of being active in sports.
I thank you for reading my long email and providing any help/advice.
Gracias!
Thanks for sharing your story with the forum. Please feel welcome to elaborate more on the positive effects Potaba and Pentox had on your condition.
A consultation with a lawyer experienced in medical malpractice could provide you with the information you need to make any decision whether to file a law suit against the physician, and any others that might be liable (partners, employer, principal, etc.) for tortuous conduct.
Initially, it sounds like a negligence suit. However, one of the elements in every tort law suit is damages. Without damages, you have no cause of action. But, it sounds to me like you're alleging you have been damaged as a result of the doctor's conduct. Damages could "possibly" include "severe" emotional distress (not to be confused with emotional distress). Punitive damages are generally not available for negligent conduct, only intentional.
And, that being said, you could possibly argue that the physician intentionally "battered" you. Intent is shown by establishing that the physician knew that he would damage your penis or that a "reasonable" physician in your area should have known that the conduct would damage your penis. Intentional torts get punitive damages. Or, if the defendant physician's conduct is such that an "ordinary reasonable" person would not have acted that way, then expert testimony is not necessary (e.g., forcefully hitting your head with a hammer).
Nonetheless, a significant element you must show as a plaintiff in negligence is that the doctor did not use a "reasonable degree" of the standard of care used by the medical professionals in the community. Based on what you said, you would need to show that it is unreasonable to bend a person's erect penis into a deformity that resembles a person with a significant peyronie's disease deformity.
If what you're alleging is sincere, it's worth a visit to a lawyer. Many experienced in this area will not charge for an initial consultation, and may have creative methods available to finance any legitimate suit.
I'm not a licensed attorney, but I'm in my third year of law school.
CF
Thanks for your advice. I live in the SF bay area, so please let me know if you know any good lawyer i can consult.
I found Patoba compared to Pentox was very difficult to take, especially considering the number of pills you have to take. Though my stomach tolerated it pretty well. However, it did help.
My urlogist, Dr Lue firmly believes in Pentox and i think its helping.
Also, i have been considering using X4 labs traction device. Can anyone share their experience in general with traction devices like fastsize or X4?
thanks!
Quote from: hopeful74 on July 07, 2009, 06:42:42 PM
... let me know if you know any good lawyer i can consult.
...Can anyone share their experience in general with traction devices like fastsize or X4?
I'm in Atlanta and I can't think of any lawyers I know of in SF. However, I would suggest finding a firm that specializes in medical malpractice.
Per traction...I don't have a clue, I'm using the Fitzz VED and I have been very happy with my results so far.
You might first explain to the forum why you're considering a traction device, many on here have used them.
CF
Hi everyone,
I am 22 years old and I seem to have a very unique case of Peyronie's - I will share my story here and hope for some advice from those who have experienced similar things. As far as I know I experienced no penile damage or injury - however I have been sexually active since I was 16. In December 2007 I presented with pain in my right testicle and internal pain in my lower right abdominal section - this pain came on suddenly and was bad enough to warrant a visit to the ER. MD's suspected appendicitis, contorted testicle or a hernia, however none of these turned out to be the case - the discomfort was being caused by an internal plaque deep in the base of the penis. The discomfort eventually became prominent in the area between my scrotum and anus, particularly while sitting. About Feb 2008 I developed a plaque near the base in the right side of the shaft of my penis and in May 2008 I developed another plaque midway up the shaft on my left side that began to cause curvature (It was at this point I realized I had Peyronie's Disease and began seeing Dr Sliwinski in Richmond,VA). Since that time I have developed more plaques for a total of 6 - some of them seem to connect by "spiderweb-like" fiberous material. 2 of these plaques cause curvature - one upwards about 30 degrees and the original one to left about 25 degrees. The others are either internal causing discomfort or external but smaller and seemingly inconsequential. My symptoms include a loss of sensation (seemingly due to reduced bloodflow) in my right testicle during prolonged erections, the curvature mentioned above and painful erections, in addition to discomfort while sitting from the internal plaques. I am currently taking pentox 1200 mg daily and was recently prescribed verapamil 15% topical cream which I am in the process of locating. I am still functioning for now, but it seems I am especially prone to the development of this condition - does anyone else have diffuse or internal plaques? Should I add L-arginine to the oral treatment? Has anyone tried hyperthermia (heat treatment) to increase bloodflow? This method seems simple and promising in limited studies. Should I look into manual therapy? I have been hesitant to try these methods just yet. Is there anyone who was diagnosed younger then 21? I am hopeful but realistic about the possible outcome of such a bad case at such a young age. Best of luck with your respective conditions! Any help is greatly appreciated!
VAlex
VAlex,
I have had problems almost identical to yours. How has the pentox helped you?
Thanks CB for your responses. I am looking at traction devices because they claim that they can increase the penis length and straighten the penis up. I am hesitant to try. Fastsize recommended that i check with dr. levine who sent email saying that he approves it. However, to me its a very risky proposition.
Hello all
This is my first time posting but a long time reader of the forum. I am at a point where I am at a cross roads with my Peyronies and need help figuring out my next coarse of action. I will try to briefly type my history.
I am 36 years old I have had Peyronie's for two years. It started with a injury during intercourse resulting in a plaque on the left side of my penis about 1 inch from the base to date it left me with a deviation of about 40 degrees left and a waste on the left side. I have a second plaque that is on the right side of my penis that is about 1 inch from the glands. It has not caused a deviation. My third plaque is ventrical and is underneath my penis and is in the arc of my congenital curve it has made my curve about 5 to 10 degrees worse. I have had constant pain from moderate to severe enough at times I have taken Darvocet to dull down the pain.
I have been taking per day Vit. E 800 IU, L-Arginine 1000 IU, Viagra 25mg at night. I was taking Pentox but I cannot tolerate the side affects I tried three times. I also tried the VED several times but I seem to have a problem no matter how light I pump it hurts my ventrical plaque and it takes days for the pain and discomfort to subside. Iam scared Iam doing more harm then good trying to use it.
May 7 th I just finished my 12 th verapamil injection. I've noticed so far its helped with the pain and a little with my waist but after my 8 th injection I noticed I lost a half an inch in length and a little girth. I can't say for sure timing or the injections. Its been two months and Iam still bruised up pretty good. My Uros PA told me after pulling teeth that my options were to go ahead with another 6 injections, wait 3 months and see where it stands, surgery "plication", or do nothing.
Iam thinking of going to see Dr. Levine in Chicago to see where I stand and what options he has for me.
Iam sorry this posted end up so long. If I posted it wrong I apologize once again. Any input would be greatly appreciated.
Thank you for your time
Woodman
Woodman - It's a shame about pentox being out of the question, and the VED issue too, as this cuts down on your treatment options somewhat. I would suggest light traction, but if you had problems with the VED, maybe the same will apply here, making it a risky endeavor. I'm quite shocked that it has been two months since the injections and you are still bruised. Is this something that typically happens with other people? Maybe you will reach a stage soon where you've got about as much mileage out of verapamil as you're going to get and are entering risky territory. it's hard to tell though, as peyronie's can be so unpredictable.
Surgery may prove to be a viable route for you at some point, but until the condition has stabalised it's not something that should take place. To reach that place, getting the inflammation under control is a must. You appear to have taken signifcant steps in your bid to reduce inflammation, but with limited success. In your shoes, I might try to expand the oral treatments regimen, as this appears to be something with a bigger upside than downside.
hi. not sure if i have got this, but my penis is softer and slightly narrower on one side, but fine on the other. i also notice that the veins on this side are more prominent. does anyone else get this?
hello - Have you seen a urologist? It certainly could be peyronie's disease but it's best to get a diagnosis first. If it is peyronie's, you may wish to state the benefits of pentoxifylline (https://www.peyroniesforum.net/index.php/topic,772.0.html) to your doctor (some sufferers take it alongside l-arginine and viagra - the PAV cocktail). A mechanical option such as a medical grade VED (Vacuum Erection Devices) should also be considered as a number of members here have found it to be effective.
RichB-
Its hard to say...I have been takin it for roughly 6 months but I stopped for a month during May. My curvature has stabilized in the past two months but the pain and discomfort are still there. Some days are worse then others. It seems my curvature has had 3 or 4 bad episodes of deterioration since the onset a year and a half ago. Im going to keep takin it in hopes it works. What have you tried?
VAlex
Newguy - Thanks for your time in ansewering my post. They say the bruising can last for a while. If I remember correctly I heard the Uros PA mention he has seen before the bruising last for one to two months. Iam going to e mail and ask him about it.
VAlex- I have been diagnosed with peyronies since i was 16 years old, so you are not the only young one that can get this disease. However our condition seems quite different for i only have a slight bend to the left and virtually no plague (so says my urologist) I am quite dissapointed in myself because i have only been taking full spec 400 Vitman E and Fish Oil and doing virtually nothing else to help my condition. My urologists tells me in 3 months that I should be back to normal but I sadly know that's not the case. He can simply not answer why i still curve, have pain, and don't have much sensitivity even though he says its subsiding. So I am very lost with this and can't help but still think I have something else entirely going on but he reassures me it is peyronies disease. Sorry if this post is more about me babbling on =P just want you to know your not alone man and keep at it! Don't be like me and virtually do nothing to gain better results. Im going to try my hardest to keep healthy and get this disease better for my self confidence. Best of luck!
Hi, I'm 24 years old and I've Peyronie's disease since I was 21 years old. I saw a urologist a long time ago who confirmed it but he didn't really seem interested and more or less told me to live with it and tried getting me out of his office as quick as possible (To be honest I don't think he really had any idea about Peyronies Disease). I have a pretty significant bend to the left. I don't know the degree exactly but my penis is very much banana shaped and it's been like this for a number of years now. Besides the bend I have had erectile issues for a while now. I used to think it was due to the Peyronie's and it could be/some cases it can be but it turns out I also have hormonal issues (aren't I lucky?) going since a few blood tests I've taken have shown me to have low testosterone. It got me thinking maybe this could be a factor since the disease commonly effects older men 40+ and generally that's when T levels start to dip.
Anyway if you could provide me with some advice on the course to take that would be appreciated. I have an appointment with a urologist on Weds. for my ed/testosterone issue and will probably bring up the Peyronies. I really want to see this thing gone. What is the chance someone in my position can be helped? Is there anything that can be done for someone like me or have I put it off for so long my only chance is going under the knife? I'd rather not go down the route because of not only the risk and cons associated with it (like shortening). I'm under the impression that there must be a way to reverse it even though it hasn't been discovered yet. My feelings are that it is not sudden and severe like a fracture for instance, where the penis is literally broken. The Peyronies Disease comes on slowly (I remember having a bruise for weeks) and therefore there must be a way to reverse even though I imagine it would be a slow process, just like when it formed. I just wish there would be a breakthrough that's all because this condition really sucks for those that have it. I have very poor self esteem and avoid women because of it.
Welcome Overcomer! I would suggest that you thoroughly examine this website. There is a lot of great information here. I am sure that others will respond with good pointers for you, but you can speed up the process by snooping around here on your own. It is not that we don't want to help, but it is really difficult to repeat the same information over and over each time a newcomer shows up. Once you do some research here on your own, you will get your legs on the ground so to speak and be able to ask individualized questions not covered in the library and such and you will be able to move ahead much more quickly. - George
Hehe I am looking...so much information! All I really want to know is if there is any hope for me or If I'm beyond the I can be helped stage. My Peyronies Disease has long been stable. If there is anything that I can take I'd like to know so I can bring it up to the Urologist on Weds.
Quote from: George999 on July 17, 2009, 11:30:59 AM
Welcome Overcomer! I would suggest that you thoroughly examine this website. There is a lot of great information here. I am sure that others will respond with good pointers for you, but you can speed up the process by snooping around here on your own. It is not that we don't want to help, but it is really difficult to repeat the same information over and over each time a newcomer shows up. Once you do some research here on your own, you will get your legs on the ground so to speak and be able to ask individualized questions not covered in the library and such and you will be able to move ahead much more quickly. - George
Pentox a.k.a. Trental has been known to help even in stable plaques. Get on it ASAP, if you can find a doctor to write you a scrip. Also, even lazy doctors will write you a quick scrip for ED medicine like Viagra - most do it at the drop of a phrase: "I have problems getting erect"
Not only will both medicines help with your ED issues, Pentox makes your blood cells more squamous and helps them get into the Peyronies Disease-affected area more easily, and Nitrous Oxide (the chemical that keeps you erect) has incredible healing properties in penile tissue.
Also, take a look at the VED boards. They're probably the most extreme treatment next to injections/surgery, and they're an investment, but many people here swear to them. I've just started mine, and hope to report good results soon!
Quote from: ocelot556 on July 17, 2009, 02:54:51 PM
Pentox makes your blood cells more squamous and helps them get into the Peyronies Disease-affected area more easily, and Nitrous Oxide (the chemical that keeps you erect) has incredible healing properties in penile tissue.
Ocelot,
what do you mean by "squamous?"
CF
Squamous means "flat", and it's a term I picked up when I was first studying Pentox's effects in preparation for asking my uro for it. Being a fan of vocabulary, I guess I retained it. Ha, I'll explain better.
All that squamous means is that it makes your red blood cells more pliant, I suppose, or "squishy" so they can get into narrower places, such as capillaries and such that have been squeezed tight by the presence of the plaque.
Thanks guys and it's very appreciated. Are there any links to some articles and stuff I can take with me on Weds. about Pentox? When I bring it up I want to be able to refer to some things in the event he hasn't heard about it (Seems like a lot of Doctors don't quite know what to make of this condition). I will definitely try to get my hands on Pentox. Are there any side effects from using it? When I get it and start treatment I'm gonna try to keep some sort of journal or something to track progress and I'll keep you guys posted.
Just curious for thoughts.
I have an hour-glass deformity. Recently, (last 6 months) I have been working out alot and I have gained about 10 lbs. All muscle. I see some reports that state that low hormone levels may cause a propensity to Peyronie's. I know that with muscle growth comes increase hormone levels typically. I have basically stopped all treatments... (I used to load up on neutri-ceuticals.) I hit a bout of depression and I just stopped. The thing that took me out of depression was the exercise and nutrition.. Basically, I take no meds.
I have been improving. I think it is from health, exercise and nutrition. I have seen my length return some, my deformity improve and my plaques shrink recently. I am going to re-start my aggressive neutri-ceuticals, get my script of Pentox and probably hit the VED. (Got to order one.)
Basically, what I am wondering... does spontaneous resolution actually happen?! I am looking forward to "spontaneously" hooking up again on a Friday night. Though I must say... I have gotten back to a point where I could probably explain to an understanding girl what is going on... I don't think for a second that my condition would impede the act of sex... I am just self-conscious of what once was. Furthermore I don't need some girl blabbing about my condition. (I'll have to hang out where all the English as a Second Language Schools are! ;-) Eventually they leave the country!)
Just curious... I like the idea of dramatic improvements followed by a shot of Xiaflex to finish it off... Any thoughts?
Ted.
Ted - It's always good to hear positive news, and your improvement is certainly that. It's often so hard to let what has resulted in the condition worsening or improving but I certainly think that regular exercise, which likely brings about a more positive mindset, does help. If it doesn't, I doubt it does any harm. I certainly do believe that some people spontaneously improve and was surprised when I had a nose around a Dupuytren's contracture at the number of people saying "I had penile curvature too, but it went away". Maybe it's the case that some conditions differ depending on how they are caused and some people are more likely to improve than others. Who knows?
Since it appear that there may not be a gulf between those who improve and those who don't, it pressed the point even more of doing all that you can (oral treatments, VED, diet etc) to maximise the chance of the condition having a more positive outcome.
I think the jury is still out on xiaflex, but in combination with other treatments, who knows. Fingers crossed.
Ted
Does spontaneous resolution actually happen? The answer in my case was yes. After about 18 months my curve straightened. This was in 1995 &96. The doctor had me on 400IU of vitamin e three times a day and potaba. When the curve straightened I went off the potaba but stayed on vitamin e for years.
The bad thing about spontaneous resolution is loss of penile length. To tell what you will have after is crook your finger to the shape of your curve, the short side is what will be left. If I hand know then what I know now I would have been on the VED exercise to help keep the length. I lost about 25% of my length. Today thanks to the VED exercise given me by Old Man and my implant I am back to 90% of the size I was in 1995.
Jackp
Thanks guys,
jackp, I really appreciated the contribution you are making to this board. You bring alot of insight. I know I am looking at a situation that if the alternatives don't work in the next year, I will consider surgery... I know my condition is not horrible and it would respond well...
Do you think traction would have helped you in the length category? I am about 2 years into this bullsh#t and I feel rather certain that calcification is not my problem. My next step is going to be aggressive. VED is a part, but I was thinking about traction at the same time. I have a life that would allow for the 4 hour-a-day requirement and from what I see... Hour-glass issues seem to respond well to traction...
To stick with the topic, "Progression"... my original issues was a manageable plaque that was a minor problem, but not an impediment that over-night advance about a year later to a real problem... and has now receded to a problem... but it leaves me with a hope of continued recession.
Thanks to newguy as well... I don't always write, but I read the posts frequently.
If, WITHOUT TREATMENT, my penis simply resumed its former shape AND dimensions, I would call that spontaneous resolution. Anything less I would NOT consider spontaneous resolution. I really have grave doubts as to whether genuine spontaneous resolution EVER occurs in the case of Peyronie's. I suspect a lot of docs assume spontaneous resolution once the patient stops complaining for whatever reason. I really do not trust some of the conventional wisdom type "data" regarding this disease. I think it has really had a negative impact on treatment for Peyronie's patients. - George
Hi. I have got a slight curve/dent. I can also feel a small lump. There seems to be a cord-like thing from the start of my penis (i cant see where this initially starts though), that runs directly next to my vein and into this small lump, however, this cord-like thing is moveable, whereas the lump is not. Does anyone else get these symptoms, mainly the cord-like thing into the lump? Thanks!
Quote from: ukguy on July 21, 2009, 09:15:55 AM
Hi. I have got a slight curve/dent. I can also feel a small lump. There seems to be a cord-like thing from the start of my penis (i cant see where this initially starts though), that runs directly next to my vein and into this small lump, however, this cord-like thing is moveable, whereas the lump is not. Does anyone else get these symptoms, mainly the cord-like thing into the lump? Thanks!
Yes I have the same thing as this. My lump is on the left side in the middle of my shaft and the cord like lessions go to the bottom of my penis it attaches to the lump. I cant move the lump either.
ukguy -
These symptonms are quite common, though i you haven't ever seen a urologist about this problem, now would be a good time to go. Here on the forum use of trental (pentox) is quite widespread, so I would suggest that to you. You can take evidence to your doctor concerning how it can be effective --> https://www.peyroniesforum.net/index.php/topic,772.0.html .
Viagra (or similiar) may also be of use to you as well as arginine. This is sometimes known as the PAV cocktail (Pentox,Arginine,Viagra). Varios member of the forum as also taking other oral treatments in the hope that they will help. Discussions regarding those can be found here: https://www.peyroniesforum.net/index.php/topic,22.0.html
Mechanical treatments such as vaccum and traction devices may also be helpful in regaining size if/when any is lost.
ive now got a dent on my right side which has now given a half a hour glass shape - i was cool with a slight say 30 deg curve upwards but now this - i take every kind of med mentioned here but I do fear that I may be getting worse - what do I do - dont get me wrong or anything - Im not panicking as I have learnt to live with this for the past 2 years and to be honest with you I cannot remember what my old dick used to look like - Im almost numb about this and it really doesnt phase me too much - but I just cant help wondering whats next and whats in store in the future for me with this....
My condition seems to be getting worse, I've been afraid to start Vitamin E because I take a beta blocker and having thin blood / tendency to bleed concerns me. I originally had one bb sized bump, a second one formed just 1/4 an inch down, and then they merged. It is hourglass shaped I suppose, but it runs down along the shaft not across it. This is causing a very pronounced bend to the left, almost like if you had a banana on its side. The head itself has about a 25-30 degree angle left as well from the first bump.
I am starting to feel more and more hopeless, as I have a disorder that prevents me from getting to downtown chicago to see Dr. Levine. His telephone consult is $180, but I don't have much money right now. I'm already spending over $100 a week on other medical treatment.
I've gotten suggestions of Pentox, but I am also EXTREMELY medicine phobic. I cannot stress this enough, it is not just a rational fear, it is an entirely irrational phobia of medications. It took me a very long time to start the beta blocker because I was afraid of side effects, then I became too fearful to stop taking it. Unfortunately Inderal is specifically identified as having a link to Peyronies, and I still take it twice a day.
I really don't know what to do, thing just seem more and more hopeless. I can't understand why the condition is getting worse, I have not been sexually active. I don't know if I'm supposed to try stretching or what, I really have no proper guidance and there are way too many "snake oil" type theories out there it seems. Seriously this is getting me more and more depressed the worse it gets. I can now see that I have lost girth on the top half, probably close to 1/2 of an inch. It also seem shorter now. I feel like I am being robbed of what makes me a man.
necros
The VED exercise will help. It is non invasive and nothing goes through your system to cause any problems. My wife has anxiety related IBS and after years has finally found a drug that helps, but she puts it under her tongue, most meds that go through her system gives her problems.
The VED exercise is on the Child Board. It helped me after 13 years. There is also help on the VED thread.
The one statement you made about your penis, "I feel like I am being robbed of what makes me a man." Your penis does not make you a man, It is who you are that makes you a man.
Jackp
Quote from: necros on August 07, 2009, 03:26:24 AM
I don't know if I'm supposed to try stretching or what, I really have no proper guidance and there are way too many "snake oil" type theories out there it seems. .
necros,
I agree with jackp. From what I infer from your posts, you're not doing much, if anything, in the way of treatment. Additionally, it sounds like you're worrying about it a lot.
At the very least, read all of the posts under the VED thread. I began using the VED back in April and I believe it has had positive effects on my condition.
So, you can start reading the posts, and get encouragement.
CF
Peace Forever and Always, here's what happened since the last time
I saw a Dr. last week for my Testosterone deficiency. He made no bones about the fact I need T theraphy. I'm going to be applying Testosterone gel starting next week (have to take one more test). Since the onset of Peyronie's I've developed some bad ED: don't get wood nigh-morning wood, have trouble getting it in general and maintaining it, have developed dribbing after going to the bathroom as well as premature ejaculation now *shakes head*. The latter two are new occurences which happened within the last year. I think it has to do with Testosterone being low. I'm hoping when I'm on it most of these symptoms will alleviate.
As far as the Peyronie's I've been given it some thought. I'm taking simple Vitamin E now but am going to make an appointment today to see Munarriz again and ask him about Pentox. I'm also interested in trying some sort of device for the plaque, either the traction or the VED. Which do you reccomend?
Here is another issue I have which I can't really ignore anymore. The plaque I have is on both sides of my penis but it only curves to the left, where the biggest scar is and it's just below the head itself. Because of the dribbling I became prone to infections and now my foreskin has become very tight. i don't want to get it but I was told I need to have a circumcision done. The foreskin is tight and literally chokes my penis if I get an erection, hence sex would not be too pleasurable. The thing is if I'm going to get one I'm pretty sure they are going to slice across & place the stitches where the plaques are. Is this safe? The thing I fear is they end up botching this thing if I'm to get it because of the Peyronies and then I have another problem on my hands.
Overcomer - I'm pretty sure they will only cut the skin. Hopefully this will mean that there's little chance of anything nasty happening to the underlying tissue.
I too think this is does not involve the underlying tunica. Hopefully this will not turn into a crazy exchange over the evils of circumcision ;D.
I would get a competent doctor that understands your sensitivity to penile trauma so clamps, catheters, hands, are used with caution.
After 2-3 years of suffering from God's gift(why not ca. or something other terminal disease?) GOD IS DEAD!
Also our f..cked up medical system and drug companies. THink there was was a greater demand? There're would
be a cure or better medications.
If It wasn't for my benzos my doctors won't prescribe and have to buy on the street. I could not cope.
My heart goes out to the young sufferers, I after 30 years and close to a 1,000 encounters(no diseases)
I have at least memories. Doctors only care, if they profit.
I understand your pain at having to deal with this illness, but it is best to try to concentrate on either doing what you can for your own condition (surgery maybe??), or trying to help others. Many people claw their way out of this hole and manage to return to normality or something approaching it. Again, I do understand where you are coming from, but the cancer comparisons are not really fair on those with peyronies or those with a terminal illness.
Ducard,
I have sympathy for your condition but not your post. We do not debate, curse, or preach God here, and we do not pepper our posts with slurs against entire groups of people or with four letter words. I know good doctors and have just buried a sister from cancer not to mention having fought my own cancer. I am not impressed with your tirade.
More of your problems seem to result from illegal drug abuse, and attitude than from Peyronies Disease. We are here to support and help but NOT to subject ourselves to a total lack of consideration or lack of courtesy for others. Please show some respect for others on this forum even if you have difficulty doing so for yourself or those close to you, and clean up your post.
Hawk
Sorry it is hurting you emotionally right now ducard.
When a very dear friend died climbing, an old lady wrote to her father and said "Death is not too high a price to live for a life well lived."
Her life had been well-lived because she cared about others, and lived a life filled with compassion and love. She was also wonderful and beautiful and died at 22.
Her parents received over 12,000 cards and letters about her - that is how many people she touched. One person met her on the ferry from Britain to France for 20 minutes and wrote to say it had changed her life for the better.
Wow.
And at 22, she had never had much of a sex life - yet.
Sexuality did not define her, nor does it define you. But her suffering, when it came, did not define her either.
One thing that helps me here is to vent less often and to listen and try to help more often.
Here, it is better to bring your message, not your mess.
Try it - it may help you.
Tim
I ve had Peyronies Disease for a little over two years now and have had chronic pain the entire time. I have three plaques. One plaque started my Peyronies is on the left side of my penis about one inch from the base. In the last few weeks the pain has increased and its become tight. I feel it pulling in both erect and flaccid states. It feels like when you pull a muscle and it stiffens up. If I move my penis to the right the opposite side of the plaque I feel it pulling it seems the plaque is drawing up. Then I have a ventricle plaque witch also has pain constantly.
Has anyone experienced constant pain like this for a little over two years into Peyronies? Has anyone experienced a plaque drawing up after this amount of time and this quickly over a few week period?
Ive been to two urologist in the past year or so and asked both of them what I could do about the pain. Both doctors told me theres not much they can do one offered celebrex the other just gave me a blank I dont know what to say look.
Has anyones doctor prescribed them something for the pain besides pentox? I tryed Pentox but I could not tolerate its side effects.
Thanks for your input
Woodman
Quote from: Woodman on September 04, 2009, 02:02:30 AM
Has anyones doctor prescribed them something for the pain besides pentox? I tryed Pentox but I could not tolerate its side effects.
For me, curcumin (I get powder
here (http://www.easycart.net/BeyondACenturyInc./Herbals_C-E.html#8550)) totally knocks out pain. I take 1200-1800 mg.
At a minimum mix it in oil and take it that way (warm extra virgin coconut oil or olive oil). To increase bioavailability further, mix soy lecithin in warm water and stir. After a minute, put the curcumin oil mixture in there and stir, and you'll notice that the lecithin has broken up the oil into lots of little beads, perfect for absorption.
s&s
There have also good anecdotal reports and a small study indicating Acetyl L-carnatine 2 - 4 grams is good for pain.
Pain means an active flair up and these often return repeatedly over the course of the disease.
I would also try ibuprofen if you are not taking Celebrex. it does not just mask the pain, if fights inflammation as does Celebrex.
Woodman - My situation isn't so different from yours. I had a previous bout of peyronie's disease years ago, and after some improvement I managed to injure myself through traction. I think peyronie's sufferers are occasionally very suseptable to reactivating their condition even if they do follow tried and tested routes (unfortunately). Since then on occasion an ache/pain appears to manifest regardless of any external influence. I note that in your case Dr Levine put this down to damaged nerves and stated that he would operate. I was slightly chocked at that, but maybe he's seen people with similiar conditions and has followed them up??
All you can do is to try to throw everything you can at it. Peyronie's has a natural lifecycle, and I really don't think we can claim at this stage to have a way to dramatically impact that in all people. Certain treatments do appear to work for some individuals, but nothing appears to be "the" soltuion to pain across the board. Also, since peyronie's bouts have a natural lifecycle, sometimes it is very hard to detach the effectiveness of a treatment to a natural dying down of the inflammatory processes. This confuses matters.
I would recommend pentox, l-arginine, and viagra (but I notice that you are unable to tolerate pentox). I notice that you also have issues with the VED, so we'll have to give that a miss for now. It may be worth trying topic ibuprofen, as there are less side effects, and it does penetrate to the deoth require (at least that is my understanding due to the studies relating to its use in people with knee injuries). It's worth following up on s&s' suggestion of curcumin too. If it becomes apparent that people are getting relief from low dose naltrexone, it could be something worth checking out. It's effectiveness in peyronie's is very much up for debate at this stage though. I'm going to try it so I'll let you know what it does for me. If you try (m)any of these suggestions and they work for you, be sure to let us know.
I haven't posted since June. Having begun this very unpleasant "adventure" about last November - I can state that matters have not progressed very well. The pain I experienced previously while flaccid has - for the most part - gone. However, when my penis is "erect" there is considerable pain and discomfort. Even when not painful - it has a very unnatural feel - a weird taut sensation -. I have most definitely lost around two inches in length - if not more. I saw a specialist (here in the UK you have to be referred by your GP) at the beginning of the year. If you read my "experience" in the urologist section you will see how badly that went. :-\ He muttered that 40% of cases "will resolve themselves". Well it ain't going to me. I was supposed to see him again this month - the appointment has been cancelled twice and is now for early November. I have absolutely no faith in him and my GP doesn't really want to know. So, progress is not great. I am really in limbo. I try not to think about it all too much. Thinking about sex results in pain - now that's something new to my life as a man. Does anybody have any idea of when I can expect the painful erections to stop? Will they? ???
bertie67 - I'm very sorry to hear that your condition has worsened. I would say that the pain you are experiencing should eventually go away, but I'll let others chime in if they have a different view. It's frustratingly difficult to put timescales on any of this though, which to me is one of the hardest parts of this condition to deal with. Your urologist sounds unhelpful, maybe you can ask your GP to send you to a different one? After reading through your posts I notice that you don't appear to be taking any oral medications and that your urologist refused you pentox. If you are still in an active phase maybe it is worth your while gaining access to it. There are online options. You should also take l-arginine and maybe viagra depending on your ability to gain full erections.
If it does not make your pain worse, it's worth considering the VED, or perhaps traction. In an active phase I'd probably go for the VED.
bertie67
Have you tried ibuprofen(IB) for pain? I did not have pain when my peyronies started in 1995 but I was on 800mg twice daily for arthritis.
One thing is true in my case after 18 months the curve went away but I was left 1 1/2 inches shorter. I regained about 3/4" after starting the single cylinder VED exercise. Today with the help of the VED exercise and my implant I have regained 1 inch of the lost length. You can click My History link below for the whole story.
Since your doctor will not prescribe pentox try 400IU of Vitiamin E two to three times a day. Yes you could be one of the ones that the curve resolves in 18 months. You have 40% chance.
With the VED exercise you have a good chance of regaining some of your loss.
Jackp
Quote from: jackp on September 06, 2009, 07:23:40 PM
Yes you could be one of the ones that the curve resolves in 18 months. You have 40% chance.
It is not my intent to discourage anyone but rather to give accurate information. Spontaneous reversal of Peyronies Disease is very questionable at best and if it does occur, clearly occurs in less that 10% of the cases.
I think it is very telling that we have never seen anyone here on this forum ... ever ... that has reported any kind of spontaneous resolution of Peyronie's Disease. I am almost to the point that I believe that spontaneous resolution is a medical myth. The doctors tell the story because they are too terrified to confront their patients with the truth about this disease. - George
Hawk / Georeg999
I for one had a spontaneous resolution of the peyronies curve. Even though the curve corrected in 18 months I lost 1 1/2 inches of penile length. Today I still say I have peyronies because of the scar on top of my penis.
This is a cut and paste from Dr. V Gary Price in the Dallas TX area.
Occasionally the condition regresses spontaneously with symptoms resolving themselves. In fact, some studies show that approximately 13 percent of patients have complete resolution of their plaques within a year. There is no change in 40 percent of cases, with progression or worsening of symptoms in 40 to 45 percent. For these reasons, most physicians recommend a non-surgical approach for the first 12 months
From my research most Male Sexual Function Specialist including Dr. Abe Morgentaler of Boston agree with this statement.
Jackp
JackP and co - I think people are talking about two different things here really. 'Spontaneous resolution' to me is a description that is best used to describe a person who developed peyronie's symptoms only for them to completely go away over a period of time, leaving no trace. I think, if this does happen, we're taking about the single digit percentage range. If however a person has curvature, which disappears but leaves behind a 1-2inch loss in length, the actual condition has not resolved at all. The change is surely likely due to a shortening of the longer side (hence the straighter appearance, but loss of length). So in a sense, the curvature has resolved, which is potentially useful, but the condition has not.
Along the resolution theme, perhaps an interesting question would be has a condition resolved or improved in real terms as a result of prolonged pentox,-l-arginine, viagra use in early stage peyronie's? We have read in the Dr Lue pdf that a reduction in plaque size was noted in a great many men takin pentox, but did this always/sometimes/ever result in a noticable reduction in curvature? This info doesn't appear to be available, but are there any statements relating to this from noteworthy urologists? If so, I'd be eager to see them.
newguy
I agree that we are talking about two different things. Curve correction still leaves the peyronies side effects.
I also do not know of a complete spontaneous reversal of peyronies, but I could be wrong.
Jackp
As NeyGuy stated, resolution of curve with loss of length only means the plaque is spreading to the long side and ALSO shortening it as well. I don't think anyone looks forward to such straightening or that they would call that resolution.
The really sad thing that I see here is that NOT ONLY are doctors falsely optimistic about spontaneous remission, they are also failing to apply aggressive treatment early on and seemingly basing that on this false optimism. IMAGINE if urologists applied cheap and effective Pentox at the first complaints of inflammation. Huge number of Peyronie's cases could potentially be avoided. This demonstrates a real problem with the way medicine is practiced in the world today. - George
I think it is rather a huge problem with the lack of understanding of this disease. I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it. This is evidenced by how many offer cochcine, vitamin e, Celebrex, and other treatments in a feeble attempt to do something.
Quote from: jackp on September 06, 2009, 10:31:09 PM
I for one had a spontaneous resolution of the peyronies curve. Even though the curve corrected in 18 months I lost 1 1/2 inches of penile length. Today I still say I have peyronies because of the scar on top of my penis.
Jack, it sounds like you had contraction on the opposite side that changed your bend.
s&s
S&S
I am not sure of the explanation of why the curve suddenly straightened after 18 months. Just glad to be straight again but the loss of length was a bummer.
I asked the urologist I was going to at the time if he could do anything to help, he basically said no. That was 1995-97. Started me on Viagra the first week it was out in 1998.
The local urologist I use now and I were talking he said that about 1/3 of the cases he sees redponds this way but had on explanation as to why. I do not think doctors fully understand why.
He did explain that if you curve your finger to the degree of the curve that if you straighten you length will be that of the short side of the curve.
This is what I meant by spontaneous correction was the curve. I firmly believe that once you have peyronies you will always have some degree of peyronies of its side effects.
Jackp
Quote from: jackp on September 07, 2009, 12:45:45 PM
He did explain that if you curve your finger to the degree of the curve that if you straighten you length will be that of the short side of the curve.
That makes sense.
s&s
Quote from: Hawk on September 07, 2009, 11:56:04 AM
I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.
And there is a reason it is not established to be clinically effective. Because it is not effective most of the time. Heck, if pentox was the panacea you guys flaunt it to be, this board would lose most it's members and we would go back to spending our free time doing other things besides brousing here for a "effective'' treatment.
Quote from: Lancaster on September 10, 2009, 11:54:01 AM
Quote from: Hawk on September 07, 2009, 11:56:04 AM
I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.
And there is a reason it is not established to be clinically effective. Because it is not effective most of the time.
Lancaster, thanks for your posts.
mmmm, I believe what Hawk meant is that Pentox has not been "established" as "clinically effective" because no "clinical" tests of its effectiveness have been performed, only anecdotal "tests." And, anecdotally it has been "established" as effective. (See Dr. Lue's case study; other member posts - search "pentox").
Your statement,
". . . it is not effective most of the time", is conclusionary without supporting authority. But, if you have some authority that backs up this statement then please provide it.
Otherwise, your statement is merely an opinion, and not a credible one (at this point and on this forum; my opinion based on my reading of your prior posts and member profile).
CF
Quote from: Lancaster on September 10, 2009, 11:54:01 AM
Quote from: Hawk on September 07, 2009, 11:56:04 AM
I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.
And there is a reason it is not established to be clinically effective. Because it is not effective most of the time. Heck, if pentox was the panacea you guys flaunt it to be, this board would lose most it's members and we would go back to spending our free time doing other things besides brousing here for a "effective'' treatment.
NOBODY here is claiming the Pentox can cure Peyronie's, but for lot of us it has effectively halted its advance. No one, including you, knows that Pentox would not cure Peyronie's if it was prescribed initially because it NEVER is. The reason we are "flaunting" the effectiveness of Pentox is because we are using it and finding that it works. - George
I had an injury about 17wks ago while having sex with my girlfriend. Basically missed the hole and slammed into her pelvic bone. Listed below is what's happened so far.
Week 1- Applied icepack multiple times each day for a week. Penis started to look bruised after 12hrs and continued to get worse for the next week until I finally went to the emergency room after reading on the internet that I might have a fractured penis. Penis was pretty much entirely black & blue by then. The doctor in the ER said that if I had come in immediately, they would have done surgery to put a couple of sutures on the laceration in my penis. He prescribed a couple of Tylenol every 4 hrs and referred me to a urologist whom I saw 3 days later.
Week 2- By the time I saw the urologist, the bruising had almost gone away. He quickly looked at my penis and said not to have sex for about 4 weeks. I was pretty stoked and thought everything was fine. I started having sex again after about 1 week (stupid me). I only had mild pain during erections and the pain increased during sex when any pressure was applied on the angle of entry.
Week4- Started noticing a bend in my penis starting where the injury was. The bend was about 30 degrees. I freaked and started researching online about penis curves and penis injuries. Started taking multivitamins immediately and hot wraps to try to encourage healing.
Week 5- Started taking L-Carnitine (500mg) 2x each day and Vitamin E (1000IU) 1x each day.
Week 8- Started taking Trental (400) 3x each day.
Week 10- It feels like I have a band of hard tissue that rings my penis where the injury occurred. When I get erections, it initially has a curve of about 30 degrees still, but I can gently straighten it out and have good sex. The erection pain has gone since I started taking Trental.
Week 13- Still has curve of about 30-40 degrees and I am still gently straightening out before having sex. Just starting to use VED device in addition to oral treatments. Ran out of Trental and am waiting for next shipment to arrive. I hope that a short lapse in taking Trental won't have any negitive effects. Basically at this stage I'm no better.....but certainly no worse.
Week 15- Have been using the VED for 2 weeks now. 1st week just getting used to the feel and workings of the device. 2nd week started the 26week program. Penis looks and feels very healthy after using the VED. I'm lucky that my girlfriend thinks the bend gives my dick character. She is the one I had the initial accident with. I personally don't really care about the bend too much while I'm with her. I just want to fix anything that is broken with my body.
Week 17- On week 4 of the 26wk program. Spending about 10 minutes a session ( 5 min warming up with the VED and 5 min doing the 10 cycles). I don't want to speak too soon....but already I'm seeing some improvement. My bend has turned into more of a curve (much more attractive). I would guess it is more like 25 degrees now...and sometimes it is almost straight.
I will continue taking the Vitamin E, L-Carnitine and Trental for the next few months and hope that it will not get worse. I feel blessed that I managed to fine some great information on the Internet soon after my injury and maybe I have a fighting chance that it doesn't get worse since I started taking the above oral medication almost immediately.
I am 41 and very healthy/active. I'm going to treat this like a sports injury. If anyone has any other ideas on what I can do..please let me know.
Quote from: SimonBart on September 11, 2009, 12:55:06 AM
... If anyone has any other ideas on what I can do..please let me know.
SB,
Trental (Pentox) is a great start, considered by many here as the most effective oral treatment. Plus, make sure you're using a "full spectrum", natural (not synthetic) form of Vitamin E.
Read the VED thread and seriously consider using a VED as daily therapy. Old Man, Angus, Tim468, jackp, and Hawk are forum veterans and highly endorse the use of a VED (If I may speak on their behalf). Simply put, this treatment "remolds" scar tissue that may not be as elastic as the "original" cells; thereby preventing or mitigating any further shrinkage and bending, and reversing to some extent (minor or completely) any current "deformity." Also, the blood flow caused by the VED promotes penile health and has improved users', significantly for many, erectile "quality."
Also, read George999's information on vitamin D3 (capsules). I believe Acetyl L-Carnitine (ALC) is preferred over (just) L-Carnitine, plus many use L-Arginine and a daily dose of cialis, viagra, or levitra.
CF
SimonBart - Thanks for providing so much detail in your opening post. It seems to me that you probably did experience a fracture but it's not really common knowledge to know to go to ER. Since that time it really does seem like you're trying to get on top of this issue, what with taking Trental and so on. You might want to add L-Arginine to the mix and even Viagra/Cialis/Levitra should your erections not be as strong as they had been previously.
The advice from cowboyfood is sound, and starting VED use so soon after as injury has occured may result in you being able to access a valuable window of opportunity. If the scar is still forming or who knows reducing as part of a natural process and/or use of trental, I think the VED could help you push things in the right direction, so to speak. Being that you are now able to manually gently straighten out of penis, maybe this bodes well for the future of your condition?
Be sure to be very careful with sex over the next few weeks, and if the pain returns, take a break for a while.
Thanks newguy & cowboyfood.
Is this a good VED unit?
http://www.medicalsuppliesshop.com/product.cfm/hurl/impotence-pumps/Soma-correct-manual-impotence-pump.html
It's pricey...buy if it works it will be well worth the cost.
SimonBart:
Welcome to the forum. The VED described in the link you gave is a very good quality medical grade VED. As far as I know it does require a prescription to purchase. However, there is another VED made by the same company that makes the SomaCorrect unit. It is called the Vitality OTC three cylinder manual model VED and does not require a prescription to purchase. The cost is about $240.00 more or less based on the current pricing. It is available by phone or on line from this company: www.fitzz.com
If your order the Vitality VED, mention the word TEAM to the sales rep or in your online order and the company will give you a discount. A lot of guys on the forum have purchase this model and had good results with its use.
I have one and it gives me great service for both ED and Peyronies Disease. Be glad to assist you in any way if your decide to go with the VED therapy, so feel free to let me know, etc.
Old Man
General question for all, especially the veterans (you know who you are):
I've got a "dent", and I believe many others have too.
From what I understand, the dent is a result of the tunica part not "expanding" to its original shape. And, the limited expansion is caused by scar tissue.
First, anyone let me know if what I just stated (above) sounds correct.
And secondly, the scar tissue is "part" of the tunica, correct?
Assuming my basic understanding is correct, then does the scar tissue (the dent) affect any other "workings" of the penis?
As far as "my" condition is concerned. My "dent does not seem to affect any "workings." The dent visually "presents" itself when I'm partially erect and the dent is most visually noticeable when I'm partially erect.
However, the dent becomes much less visually noticeable when I'm fully erect. And, I can "feel" the dent with my fingers when I'm fully erect.
Also, I believe that part of my dent feels a little less "deep" when I'm fully erect than before.
I appreciate anyone that can understand my query and enlighten me.
Thanks,
CF
Hi Cowboyfood,
I am not a veteran, but I have the same problem. I have hourglassing, which is essentially a dent on both sides, just underneath the glans. It seems most apparent during the erection process and is less apparent (but certainly still there) when I have been erect for several minutes. I can feel the dents when erect but I do not feel the scar tissue as much, which I assume gets bunched up and more noticeable only when flaccid. Hourglassing, pain and shortening are my main problems. Curvature is not too bad and erectile function is fine (uncomfortable, but functional). I am worried that my scar tissue extends into the septum between the corpora as it kind of 'feels' like it is. Not sure though.
Unfortunately, I do not know how the scar tissue is attached to the tunica. I look forward to responses from the veterans as well.
Best,
Skjald
Quote from: Skjaldborg on September 16, 2009, 10:28:40 PM
Unfortunately, I do not know how the scar tissue is attached to the tunica. I look forward to responses from the veterans as well.
From what I've read on the forum, it's my understanding that "original" tunica cells transformed into "scarred" cells. If so, then that is what I'm referring to as "part" of the tunica. But, I may not be correct.
CF
The tunica itself is scarred.
Tim
Quote from: Tim468 on September 17, 2009, 11:14:12 PM
The tunica itself is scarred.
Thanks Tim! So, my understanding is correct.
Any others want to comment on my previous post in this section regarding a dent's affect on a penis' "workings?"
CF
Quote from: cowboyfood on September 19, 2009, 01:09:02 PM
Any others want to comment on my previous post in this section regarding a dent's affect on a penis' "workings?"
I see the tunica being pinched doing the same thing as a long balloon (of the type that gets twisted into animal shapes) being pinched -- it changes the shape. It's like putting a piece of tape on the balloon before blowing it up.
s&s
New kid on the block...
I was 'officially diagnosed' with Peyronies Disease about 8 weeks ago.
At first the urologist told me to 'wait and see' for about half a year.
After I got home I searched this forum and read about Pentox/Trental.
I made a new appointment and told the urologist about what I had read on the forum.
He wasn't aware of Pentox being useful for Peyronies Disease, but was willing to prescribe it for me.
He asked me to get back to him in about 3 months and give him an update on the progress.
The first time I felt something strange was about 5-6 months ago when experiencing pain during an erection.
About 2 months later I felt a little ring shaped 'thing' at the top of my penis.
I was expecting it to go away, but it didn't... :-)
Getting worried, especially after reading about Peyronies Disease I visited our doc.
He wasn't really aware of Peyronies Disease (he's a young man), but after I educated him a little he made an appointment with a urologist.
Well, here I am, 57 years old and not really knowing what to do.
Since about 5 weeks I am taking Trental 400 (three times a day) and I am also taking about 300 mg of Vitamine E a day. I was already using the Vit E since half a year.
I asked the urologist about something like 'Peyronie for dummies', but he didn't have anything worthwile reading.
He was against injections and warned me about a lot of commercial products that wouldn't help.
I would like to know some do's and don't's.
Eg, is it good or bad to have erections, is sex helping or making it worse, any other meds I should be taking? Any other suggestions?
The lump is increasing in size and I am getting very worried.
It feels very threatening to feel something growing in my penis and the urologist is telling me to wait...
I guess most of you know this feeling.
Sorry for ranting... I hope you guys can give me some guidance.
If this needs to be posted elsewhere I'd like the moderators to moved this post to where it belongs.
Dutch
Quote from: Dutch on October 01, 2009, 02:39:48 PM
I would like to know some do's and don't's.
Eg, is it good or bad to have erections, is sex helping or making it worse, any other meds I should be taking? Any other suggestions?
Briefly, the issue of whether erections help or hinder the condition has been discussed many times on the forum. I'd advise you to use the advanced search feature by clicking on the "magnifying glass icon" to the left of the search box and search for posts regarding this issue by members such as Tim468, Hawk, Old Man, George999, jackp, and newguy.
Generally, the consensus here is that erections are very Helpful to the condition. This believe (which has evidence to support the belief) is one of the theories behind VED treatment. Although your post did not mention the presence of any bends or indentations, VED usage can still help. I did not have much if any bend (just indentation) and after about 5-6 months of VED usage, I can still report I have no bend (using the VED in an effort to keep it that way!).
Also, popular and anectdotally effective oral treatments include prescription Viagra/Cialis/Levitra and supplements L-Arginine, ALC, and Vitamin D3.
Per Vitamin E, many knowledgeable posters promote the all-natural form of Vitamin E as opposed to synthetic. So, check your label (search George999's posts for a ton of supplement information).
CF
Hi Dutch,
Welcome to the forums. This is a great place to find information for yourself and to pass on to your physicians. Surprisingly, many general practitioners and urologists do not know about this disease. Your urologist experience was almost identical to mine.
Regarding your questions:
1. Erections are good. They are not hurting you. They are essential to maintaining healthy blood flow to the penis. You didn't mention if you are having any problems getting or maintaining an erection or having regular morning erections "morning wood," as it were. You may ask your doctor about low dose daily Cialis or other drugs like Viagra. You might want to read the highlights from the oral treatments for peyronie's thread:
https://www.peyroniesforum.net/index.php/topic,440.0.html
2. Sex and masturbation are ok as long as you are careful and do not cause pain. No girl on top and be careful of very hard thrusting. If you have severe curvature or bending, you might need to try different positions to prevent pain for yourself and your partner. Be sure that your are fully erect when engaging in intercourse. This helps prevent further injury due to bending. Again, if you are having erectile function issues, talk to a doctor about medication for that.
I don't want to overwhelm you with information so I suggest you read through the highlights sections of each topic. As for doctors and urologists, you should go and see a male sexual health specialist in your area. They have the most experience treating this disease and can provide the best and most up-to-date treatment options ranging from oral treatments to different surgeries based on your situation. Best of luck and feel free to ask questions any time.
Skjaldborg
As I pointed out I've been unlucky enough to have been experiencing some pain for the last ermm 16 months or so. On occasion it feels like it's going, then it comes back. Visually nothing much has changed for me, though where there is pain, there is always a fear that the worst is yet to come. Recently I pointed out that there was a slight indentation on the underside quite near the head of my penis. This particular change appeared to start with a small tender bump, then a slight indentation appeared. However, I'd say that it hasn't particularly changed much, and as such I'm reasonably confident that, that is the extent of the damage to that part of the penis. Hopefully.
A couple of days ago though, I noticed what appears to be a small nodule on the top of my penis, about half way down. What is unusual about this (aside from the fact that i've never had a 'nodule' before) is that the pain has never been in this part of the penis. It kind of caught me by surprise. Aside from the fact that the nodule is there, there aren't any other changes in that area thus far but I don't know if that will change. Obviously I'm not happy about this, but part of me thinks that this ongoing pain is entering a new phase, maybe stabalisation, so if small changes occur I'm not too concrned. Obviously if more and more nodules appear, or there are new curvature changes I will become much more concerned. I really can't know how this is going to develop, but I'm taking so many 'potentially' useful oral supplements, and am now going to start back on the VED, so there really is very little else I can do here.
Part of me wonders whether I should add some of the older treatments, potaba, colchicine etc in a bid to really try everything I can at this time. Thoughts?
Skjaldborg and CF, thanks very much for your help and info.
I really appreciate that.
Since a couple of weeks I have a slight bend upwards, maybe around 20-30 degrees.
Erections are a bit painful, but the pain seems to dissappear while having sex. I don't know why that is.
I have no dents. The lump is the size of about 1 cm2.
If I feel the lump, does that mean that it has already calcified?
Can you tell me what the purpose is for taking Viagra/Cialis/Levitra and supplements L-Arginine, ALC, and Vitamin D3?
My urologist doesn't seem to vote in favor of a VED. I am glad he was willing to prescribe the Trental.
Should I ask him for the meds mentioned above? In that case I would need to be able to explain the purpose.
Any indications on how long it takes before this situation stabilizes?
The first symptoms started about 5-6 months ago.
Thanks,
Dutch
I would like to hear from everyone who has experienced long or short term pain with there condition and has consulted with there doctor about it. I would like to hear what there doctors had to say about it and what treatments or medicines they recommended for the pain.
I appreciate all that take the time to respond
Woodman
Been a lurker-Hi everyone. For pain Woodman I apply Cortisone-10 Cooling Relief after shower once a day. I sit down and put paper towel between penis and testes and let absorb for ten minutes. Then I wipe excess off. I do this 3 days on 1 day off. Otherwise they say the cort thins the tissue.
This has worked best for me. This has really been a big help. Also, Thanks again George for the Vit D advice. Your a very smart man. That has helped alot too. Lenny
Quote from: Woodman on October 17, 2009, 02:33:57 AM
I would like to hear from everyone who has experienced long or short term pain with there condition and has consulted with there doctor about it. I would like to hear what there doctors had to say about it and what treatments or medicines they recommended for the pain.
I appreciate all that take the time to respond
Woodman
Woodman,
I think this post is a good idea and I hope many respond and maybe those of us who experience pain may find something that helps. I've had pain now for 3 1/2 years, since spring of 2006. It started out feeling like a UTI then progressed to sometimes excruciating pain for most of 2007. In the spring of 2008 the pain subsided but did not go away. I was able to stop the 600 to 1200 mg ibuprofen I'd been taking almost daily. A short time after that I developed the curvature and went to a new urologist who would only recommend vitamin E and told me to take ibuprofen or some other OTC pain med. He would not prescribe pentox. He also told me that if I was experiencing pain in flaccid penis that I should probably go to a neurologist. After reading many posts here, I realized that this uro was full of s*^#! and fired him. I had a new flareup of pain a couple of months ago and even went back on the ibuprofen for a few days. For the last few days I have noticed a significant decrease in pain, although there is most always at least some minor irritation (inflammation?). I don't know if this has anything to do with the decrease in pain, but I've started taking 3 grams of taurine a day...one with each meal. I just hope I'm entering a stable phase where the pain will disappear. Again, I hope others respond to your post, especially the part about what their doctors prescribed for the pain. Good luck.
Fred
greetings,
i've had peyronies for close to five years now. when i first began to notice the symptoms which was a bruise and a constant pain when erect that didn't go away, i went to a local urologist who told me it is peyronie's and to take vitamin e and it would "probably" go away. he made it sound like it was no big deal, no worse then a normal bruise anywhere else on your body so i left his office assured and confident it was nothing and would pass. i was disappointed to find out it not only didn't improve but instead got worse. i believe i've been at the end stage of the disease for years now as as the bend is sharp and I have severe ED (cialis doesn't work and i don't really get erections, EVER, and on the rare occasion i do they are very poor) to accompany it, as well as a good inch of length lost. i have lots of plaque on various parts of my penis. the last time i went to the urologist it was just for the ED and a ultrasound discovered I had poor blood flow. I believe this is a result of the Peyronie's because I was fine before the onset of it and nothing except that has changed. I decided to give the net a try for info and i came across this board, so much information. wonder what you all think?
bronxng77
Your story some what like mine but I did not have pain with peyronies.
I could go into a long post here but read My History. The link is at the bottom of this post.
It is not to late. Go to the VED board on this forum. Start getting your penis healthy again with the recommended VED exercise.
After you read My History if you have any questions just let me know.
Jackp
Quote from: bronxng77 on October 26, 2009, 01:35:18 PM
wonder what you all think?
I agree with jackp. If you have had Peyronies Disease for 5 years, and now having trouble achieving an erection....... you need to read jack's story and consider the surgery with the implant.
Les
jeez....that's pretty severe and certainly something i never imagined having to undergo at my age! but i'm looking for truth...so there is nothing can help me at this point besides an implant? what is the role of the ved in this? and where do i get one/do i have to talk to my doctor into it? i'm guessing surgery would result in loss of length so is there anything that can help me gain back the length i have lost since getting this? i've lost around an inch from my erection but the last i checked was over a year ago, hell, what's an erection? haven't had one of those in months, not even in my sleep or when waking up do i get one anymore. flaccid state is even more pathetic, almost doesn't stretch at all, i have around 4-5 peyronie's plaques at different sites.
bronxng:
You should follow Jackp's advice about starting the VED therapy. Be sure to read his history if you have not already. He covers a lot of ground in his battle with ED and Peyronies Disease. His successful implant surgery states volumes about what a person can do in a bad situation.
And in addition, there are many other avenues you could pursue in getting some relief. You mentioned that you have had this for about 5 years now and it should have reached a very stable state. You need to start taking corrective action as soon as you can possibly do so.
I am sure that Jackp would highly recommend that you start the VED therapy to at least start your penis back on the road to a more healthy state. His surgeon recommended that he continue its use prior to his surgery and on after to keep his penis in good shape.
A lot of guys on the forum are using the VED with many and varying successes, so read all you can on that board of topics. Others will be able to give you insight on therapy/treatments that have worked for them. Above all, don't delay any longer, get going with something.
Good luck to you and keep on keeping on as the saying goes.
Old Man
bronxng
I did not intend to scare you just be up front what you might face in the future with the condition you describe. I can relate to many of them.
Old Man is correct, the sooner you start the VED protocol the better for your penis. It can help with the curve and restore lost penile size. It took me about 3 months to start showing results but with the encouragement of Old Man I stuck with it. If you read my history you will see that I gained about 3/4" before my surgery. Dr. Milam told me to keep it up until the day before surgery.
On the VED board there is tons of information as to where to buy an OTC VED and the 26 week protocol. Will be glad to answer your questions about VED usage there.
My normal length before peyronies was about 5 1/2", When I started the VED protocol I was about 4". With the VED therapy I went to about 4 3/4" Today I am 5" and have an erection that a teen would envy.
Jackp
I was not put off by the mention of the implant. I am interested in truth above all and appreciate the posters who have taken the time to read my posts and comment. I had assumed the implant would be a possibility since losing the ability to get erections. Early on it was just the curve but erection ability had not yet been effected until about 1 year ago. I am just disappointed because I was never warned about this after going from Dr. to Dr. and they just told me not to sweat it. Reading through some of the posts I wish I had come across this board earlier since it seems a lot of the posters know more about this than some of the Dr's I've seen.
The reason why I made the post is because I'm looking for something, anything, to help regain some size if I'm to get the implant. I've lost about an inch from my erection but I read when you get an implant the length of the flaccid state stretched is what you're left to work with. The problem with that is I have so many peyronie's scars (the majority of penis is hard from the plaque) my penis doesn't stretch in the flaccid state at all so I'd be left with like a 2 inch penis and that really kills me since it'd be a loss of over 4 inches in total. It bothers me knowing how I used to be; I just really hate his ******* condition and what its done. Worst trial of my life.
bronxng
I would highly recommend you start VED therapy ASAP. There is a ton of information on the VED board of this forum.
Do not let your self get down. There is help. I have sent you a private email with some information so I will not fill up space here.
When you read the email if you have questions do not hesitate to let me know.
Jackp
thanks jack, i'm in your debt
Skjaldborg,
Thanks for sharing with us your experience w/ Dr. Lue. It sounds like you have a lot to be thankful for!
You mentioned in that post results from an ultrasound. I wanted to know if you would share with us the ultrasound process and your thoughts about it.
My uro is performing an ultrasound on me soon, and although I understand the benefits from an ultrasound, I'm still a little apprehensive about submitting to the exam.
Additionally, your condition seems to resemble mine. But, pain has not been much of an issue, I've only experienced minor discomforts now and then.
CF
cbf,
I had a full color duplex ultrasound 2 years ago with Dr. Levine. Now that I think about it I don't recall ever posting the experience, although many have emailed or PM'd me for the information. I would assume Dr. Lue's office would be a similar process. Maybe Skjaldborg can confirm.
The lab tech took me back to the exam room, and briefly explained the process. They basically perform two ultrasounds. The first is while you are flaccid for a baseline, and then again a second time while you have an erection.
So first thing is you basically strip from the waist down and lay on your back on the exam table. The lab tech gets the machine ready, types in some information about you, and then lubes up the ultrasound wand. The tech will run the machine with one hand and use the wand on you with the other. He asked me to "help assist" by holding the head of my penis still while he did the ultrasound.
Then the lab tech stepped out and an intern came in. The intern gave me a shot in the side of my penis right in the middle. It was a small needle but did sting briefly. The intern left stating that it would take 5-10 minutes for the drug to work, and that he might need to do a second injection if necessary. So while he stepped out I was doing all I could to get my penis to cooperate to avoid the chance of a second injection. The drug kicked in and the erection happened.
The lab tech comes back in, again asks me to "assist" by holding the head of my penis still. And basically the whole ultrasound process was then repeated. Taking measurements and ultrasound pictures same as before.
Then the lab tech told me he was going to step out, but for me to stimulate myself/masturbate in order to get as hard an erection as possible. But don't climax! They want you to do this so they can take accurate measurements of length, girth, curvature, etc. So the tech steps out, and in a few minutes the intern comes back in with an assistant and a tray of measuring tools. Ruler, protractor, etc. It did seem odd laying there with a full erection and having people measure me up one side and down the other.
After this was completed, they left the room and told me it might take another 15 minutes for the drug to wear off. And they want to keep you there in the room until they know the erection is going away. They said there is "another injection" they can give to counter the erection drug if necessary. So they left and I was trying to think of every "anti erection" thing I could think of. Like imagining embarrassing moments, your mom walking in on you, etc.
Anyway, 10 minutes later the erection subsides, they told me to get dressed and that was it. Would be interesting to see if anyone else has had similar experiences.
Les
CBF & lwillisjr,
My ultrasound with Dr. Lue was a little different. It was only black and white and only my flaccid penis was examined. At the beginning of the appointment I had expressed apprehension about getting injections to induce erections for the ultrasound. Dr. Shindel (Lue's assistant), said that Lue doesn't do injections and they would just be examining me without an erection. Perhaps this was because I do not currently have erectile problems, knock on wood (heh). Anyway, the process for me was as follows:
1. In exam room with Dr. Shindel and my wife, who was invited in (and happy to be there), Dr. Shindel did the initial exam of my penis and testicles and asked questions.
2. My wife and I were taken to the ultrasound room where I laid down on the exam table, dropped the drawers and they started the exam. Another assistant came in to observe since UCSF is a teaching hospital.
3. Dr. Shindel lubed me up with the jelly stuff, flipped on the machine and said, "Congratulations, it's a boy." Which was a nice way to break the tension and their humor throughout was much appreciated. They sort of stretched me out and went up and down the shaft with the wand. They did not see any calcified tissue, but you could see a band of darker tissue on the screen (like a shadow) where I have the hour glassing. Dr. Shindel explained a bit more about the disease and saved several frames to show Dr. Lue before turning off the machine. The exam was not painful at all.
4. Dr. Lue came in, performed a further palpation exam and looked at the saved ultrasound read out. He also answered some questions I had about staying on pentox.
Your experience may vary, but I think even the plain black and white ultrasound is helpful to see where the plaque is actually located. I had thought that I had it everywhere and they showed that it was fairly limited and that the pentox was working (prohibiting calcification and further inflammation). I still have the disease, but going to one of the best doctors meant I could quit worrying about what "could be" and start focusing on "what is." It will give you some peace of mind knowing what you're actually dealing with.
Best of luck and keep fighting,
Skjald
Also, if this post needs to be moved to a new area, that's fine.
My experience in Dr Lue's office was similar. And I was really happy with the way Dr Lue's office treats Peyronie's patients. Personally, I prefer the less invasive exam. But I have to admit, I would put up with a lot in order to get Pentox. At this point I have been on Pentox since July 2008. After starting the Pentox, I had some minor progression early on in terms of deformity. I have had zero flareups in terms of painful inflammation since starting the Pentox. And lately the degree of curvature has actually seemed to be gradually improving. I am extremely happy with Pentox and look forward to staying on it as long as possible since I believe it has stopped my Peyronie's from progressing. And I simply don't believe the old theory that Peyronie's eventually stops progressing on its own. My experience it that it does stop on its own, but then it suddenly becomes inflamed again and the deformity again increases. For me,. that means that it never really stabilizes. But others will say, oh, thats because you reinjured it or something like that. Whatever. I really appreciate the protection that Pentox provides. I have done things while on the Pentox that I would expect might rekindle the Peyronie's (those things happen from time to time). But so far the Pentox has fully protected me from any re-inflammation. I am very happy with it for that reason. Before getting on Pentox I was taking LOTS of supplements. Pentox is far easier and at the same time more effective. Along with Pentox I am also managing my serum Vitamin D levels and taking LDN. - George
Guys,
thank you very much for sharing your experiences.
Dr. Ritenour in Atlanta (Emory Univ.) is very understanding.
It is my understanding he wants to perform the ultrasound on me in an erect state, to get a baseline regarding bloodflow, etc.
I suppose risks are present any time you inject a needle into one's penis; but, then again, this reminds me of the question some have presented regarding the "trauma" surgery casuses to a penis.
CF
cowboyfood:
Just been reading about the trauma that injections into the penile tissue causes, at least for some guys. Remembering back when I had my verapamil injections (12 in all) they were administered by at least three different uros. Each one had his/her own method of injecting and were wide and varied.
I made better luck with my personal lady uro when she gave me the injections. She made sure that I followed her instructions as to what to do after the injections. She required that I apply quite heavy pressure to the site and hold it for at least 5 or more minutes to preclude any edema or hematoma. Those injections gave me less problems than those given by the other uros.
So, I would strongly suggest to any and all getting penile injections to hold pressure on the injection site for the above explained reason. It worked for me and could work for others. But, I still have my objections to getting penile injections due to the possible effects based on my personal experience and that of others who I have worked with in the ED and Peyronies Disease field.
Old Man
The injection for the erection is done with a small guage needle. I was not instructed to compress or hold the injection site. Just waited for the drug to do it's thing.
BUT..... regarding the Verapamil injections. I am in total agreement with Old Man. After each VI I was instructed to lie still on my back and to hold pressure on the injection site. Levine had his own techinique of doing these. He usually makes two injection sites, half of the syringe in one and the other half in the other. The VI's are with a larger guage needle and you can have some minor bleeding aferwards.
Old Man, Lwillisjr...
I appreciate the advice, I'll definitely use it.
But, I may "slow play" this ultrasound (schedule it for February) even though I have a lot of respect for Dr. Ritenour. He seems to be a pretty pragmatic doctor...
For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.
Fortunately, to the doc, my case does not appear to require any surgery; at least at this point.
Plus, my erections have been great. I really believe the combination of the VED and other oral supplements have caused my great erections. And, helped me overcome my battle to lift myself out of a depression, which starts the positive cycle of limiting all that adrenaline which kills the erection.
CF
Quote from: cowboyfood on November 01, 2009, 03:30:38 PM
For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.
Fortunately, to the doc, my case does not appear to require any surgery; at least at this point.
This is a good doctor! Seeing as your having good results with the VED and oral supplements I wouldn't change a thing, except adding pentox if you can and your not already on it. Don't go to anti- depressants, they are SSRI's which kill erections and sex drive, and delay ejaculation cause they mess with the bodies normal chemicals. Exercising can help boost your mood and sex drive, eating healthy, get sunlight.
Comebackid
cbk,
that's the uro who prescribed me pentox last May...he gave me 6 refills for a 3x daily dosage. I do run several times per week, for all sorts of reasons including blood flow.
CF
Cowboyfood,
Sounds like you are on the right track then, the only thing I'd add is that going even longer than 6 months in my opinion is good, the process is slow how pentox works, it takes time, just don't stop taking the drug, take a lot of water to, it will dry out your mouth, this seems to be common. Don't stop at six months, go 9 or even 12 if possible!
Comebackid
Quote from: cowboyfood on November 01, 2009, 03:30:38 PM
For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.
cbf,
It is a good point to emphasize. Just because Dr.s like Levine, Milam, and Lue are recommended for surgery, I'm sure they would also want to pursue all other options and also only recommend surgery after all other options have been tried. I don't want anyone to have the impression these guys are "surgery happy". I know Dr. Levine will also do surgery as a last resort.
We just have to keep in mind that each person's symptoms and stage of Peyronies Disease is at varying levels. So some may be at a stage "more ready" for surgery than others.
Les
Good point lwillisjr, Dr. Lue is definitely NOT surgery happy. He, and I'm sure the other doctors mentioned, will push medication (pentox) and thoroughly examine your sexual functioning, lifestyle and other health factors before even considering surgery. Dr. Lue also gets your partner involved which is a hugely positive element because they have as much at stake as you do. But if you need it and you are ready for it, they are very experienced in the area of surgery.
I would really recommend that anyone with Peyronie's go see a male sexual health specialist urologist. It is worth the wait and the cost. I got a lot of peace of mind from my visit. Obviously, I still have this disease and I will probably always have it to some degree, but Dr. Lue and his assistants were able to show that the pentox is working, gave me some great advice and let me know that if it gets worse, I still have options.
On a completely unrelated note, I just finished a 10K Thanksgiving run and I beat my last year's time by 4 minutes. Last year I didn't have Peyronie's. I'm getting stronger. This disease will not hold me back.
-Skjald
Les
To get an appointment with Dr. Milam you have to send a copy of your medical records for review first.
I got around this a little bit by faxing my urological history and the name of the local doctor that referred me. About 10 days later I got an appointment card with the usual paperwork. Then his nurse called me and after talking to her I faxed up my urological records and cardiac clearance from my heart doctor (25 pages). While we were on the phone she confirmed my consultation date and then set surgery for 2 weeks later.
If you get an appointment at Vanderbilt you will be sent a card from Todd Doran PA-C. You will see Todd first and then a few minutes later Dr. Milam.
I am now 13 months post op and it feels great to be Normal again.
Jackp
I wanted to ask you guys who have experianced shinkage from Peyronies Disease your experiance. Did it just come on then come to a stopping point quickly or do you noticed it getting worse slowly. I notice after 18 to 19 months I started to shrink. I ve loss as of today a little more then a half an inch in length and some girth. I ve now had Peyronies Disease for about 30 months.
Thanks
Woodman
I think the loss of erection size is 100% due to lack of frequent erections.
It is a truth of male function that the more erections you have the more you will get. This may be one of the reasons VED works so well for people.
I personally take it a little further and after using the VED, keep an erection for around 30-45 min. Since starting to do this, I have noticed a huge increase in erection frequency and function.
That is my own personal experience though, not a medical opinion.
Hi to all. This is an update on my situation. Its been three months since the onset of Peyronie's. Sept 15, which is a date that i will probably remember always. I woke up in the middle of the night with a painful erection and was shocked to see my penis with an unnatural bend. I have spent countless hours on the internet looking for helpful (and hopeful) advice. I immediatley began applying some of the treatments I read about: Vit E, Vit C, L-Arginine, L-Carnitine, MSM, DMSO with Vit E applied twice daily, heat therapy twice daily and Ibuprofen. Last month I began taking Pentox. The initial pain has gone but the bend has gotten worse. My sex life has ended. Intercourse is difficult and uncomfortable. Emotionally this is very difficult. You don't realize how much of your ego and self-esteem is centered around your penis until this happens. It is easy to get discouraged. The experiences of the members of this forum has been a great support. I wish you all the best of luck.
why:
You did not state that you were using or considering using VED or traction therapy. These have helped a number of guys on the forum. So, I would encourage you to consider using either of these to at least try to help with your condition.
The VED therapy has been the only solution for my serious Peyronies Disease problem over the past 56 years I have had it. Many treatments/therapies were tried before starting the VED therapy back in 1995. It took about a year to get rid of my problems, but it did and they have not come back during that time.
Again, I would say that you should consider using some mechanical therapy as well as the oral therapy. You need to explore all avenues that are open for you with this horrible mess called Peyronies Disease. We are all here to help each other, so feel free to ask any and all questions you might have for the forum.
Old Man
Hi to all,
New to the forum as of today. I'm 33 and have had the condition for almost 10 years now. The condition had stabilized it seems. But my plaque increased by 33% in the last 4-5 days (no trauma : I just don't get it...). So now, I'm in pain 24 hours a day. I take vit E, vit C, Ibuprofen (3 times a day), drink cranberrie juice, eat peanuts and all and all. I'm devastated of course because I cannot remember how things went 10 years ago. I can get a solid erection and did so 2 days ago. It helped : no real pain for almost two hours afterwards. But the pain came back and now I'm not sure of what I should do : Should I massage the plaque (how?) or should I wait? Should I get more erections? Should I order a VED? I'm calling my doctor after the holidays so that he can get me a meeting with an Uro ASAP.
What are your tricks, suggestions, comments or tips on immediate response when a flareup shows up? I'm in a total mess right now both physically and psychologically. I know I'm not alone
Many thanks to all,
Thisisnotcool
Actually, it's the pain : Advil doesn't work. I need something stronger... I'm allergic to peniciline Tx
The ONLY drug likely to relieve the inflammation is Pentoxifylline. Unfortunately most urologists know next to nothing about effectively treating Peyronie's (wait and see what happens is what they say when they don't have an answer), and they refuse to prescribe it since it is an off label use and they are not familiar with it. But it is absolutely the number 1 most effective drug for Peyronie's, the sooner the better. Urologists, after waiting and waiting and waiting will usually try to get you on something like Potaba or some other useless treatment because Potaba, although not very effective, extremely expensive, and nasty in terms of side effects and user friendlyness is FDA approved for Peyronie's. Unlike Pentox which is a cheap generic drug, Potaba is an expensive patent medication. Doctors don't believe that what has happened to you can happen. They like to believe that once Peyronie's "stabilizes" it is no longer a problem. But actually flare ups are quite common. Most doctors just refuse to acknowledge them. Dr Lue in San Francisco and Dr Levine in Chicago are the fastest ticket to a Pentox prescription. I also believe the VED can be helpful in controlling Peyronie's inflammation, but probably not so much so as Pentoxifylline. Sorry to hear you are going through this, but best of luck to you in getting a script for Pentox and hopefully some relief from this crap. - George
Tx George. Pentox is the plan indeed. From reading the forum I 've realized it seems to be the best option right now. Now, all I have to do is find a Uro in Montreal who's got balls.
Tx
What were your symptoms 10 years ago and did they go away?
I have taken Pentox for a week or so now, the inflammation is virtually gone.
10 years ago... Well if I remember correctly : I already had an upward curve since I was a child and at some point while having sex, I hurt myself on her pelvic bone I guess. The uro I saw at the time prescribed Vit E which I took for many months. The pain didn't last very long (one or two weeks) if I remember correctly. The curve stayed and I don't believe it was a lot different then the one I always had. So I decided to live with it : it didn't hurt, plus the girls just loved the curve! Curve approx 40 degrees and banana shaped .
That's when the change of situation happened about a week ago. It started to hurt real bad and at first I tough it was an herpes flareup but no : it was peyronies. The plaque is longer but thinner. I may have a new bb and the base (God I hope not). Now at least today, it hurts less then yesterday so I guess I'm improving.
For now, the curve is very similar but I know that could change. I am going to the left 0 to 5 degrees. Not sure that was the case 2 weeks ago. So now I believe pentox and carefull sex could be the plan until I die or something. I just hope that curve won't change until then. I don't mind the curve as it is. I just don't want to get worse + I don't want any pain right (same as everyone I guess). Now for the long process : first the GP (1 or 2 weeks) + the uro (1 or 2 months or who knows how much time if he doesn't want to give me pentox). I have to be stable until then.. :)
That's the story
Tx
Quote from: Thisisnotcool on December 30, 2009, 02:44:55 PM
Tx George. Pentox is the plan indeed. From reading the forum I 've realized it seems to be the best option right now. Now, all I have to do is find a Uro in Montreal who's got balls.
Tx
Bring studies with you. Print them out, or email them to the doctor beforehand.
Happy New year to all. Been taking Pentox now for two months ... no improvement. In fact I feel a further spreading of plaque or hardening along the shaft. When erect my penis feels almost like stone! Erections are painful with a sharp bend at the top. I notice (when I look) that the head does not enlarge like it used to. I guess this is due to impaired blood flow. When flacid my penis looks normal. Quite honestly I'm tired of thinking about it. If it wasn't for the painful erections waking me up at night i could probably live with this well enough. Yes, I feel discouraged but I will continue with the Pentox, vit E, MSM, and L-arginine for awhile longer. VED's are another option but I will wait to see if there is any improvement in the coming months.
why:
IMHO, at this point, you should not wait any longer to start the VED therapy. Waiting any longer only lets the Peyronies Disease symptoms grow and cause more problems.
Go to the VED board and read as many posts as you can to get a better picture of what a VED can and will do for Peyronies Disease.
Old Man
Hi Everyone,
My first encounter with Peyronie's started last July (though I wonder if perhaps it was sooner and I just didn't realize, because I would occasionally have the "hourglassing" happen as my erection was starting, but it would go away as I manually stretched the skin). It seemed to happen virtually overnight as far as the curvature, and I started basically at a 45 degree angle. At first my uro said to just take vit E and we'd see if it went away on it's own after around 8 months or so.
Luckily I found this forum and got educated and was encouraged to action by so many wonderful people who helped me feel not so alone with this kick to my masculine ego. I went back to the doctor and got a Rx for Pentox, am also taking L'Arginine and Carnitine, as well as doing the VED 26 week therapy.
Now that I am on my 7th month, the curvature has worsened to almost a 90 degree angle. I wrote to my uro and inquired about getting the v injections. He had said in the past he would be willing to do that. Am waiting for a reply.
I'm not sure if my "throw everything but the kitchen sink at it" approach helps or not, but I guess when one sees his penis staring back up at him from a 90 degree angle during erection, a sense of urgency starts to set in.
So the reason I'm writing is to try to get a better idea of other people's experience in terms of fluctuations in curvature, severity of curves (anyone else ever have their curve at any point in their peyronie's reach that pronounced of a curve?), and what exactly is an "active" stage of peyronie's? I know from reading up on it that the so-called active stage lasts like 8 to 12 months on average. What happens when the active stage is over? Does it get better for a while? Or does active mean that this is the time the curve grows bigger and at the end of that active stage it just stays at whatever god-awful curve it ends up at? Good Lord, I couldn't bear it if the damn thing ends up turning back towards me.
So when someone says they have been dealing with their peyronie's for several years, is there only one active stage from where the problem started in the first place, or are there several active stages where it'll settle down for a while and then starts up again later? And again, when it "settles" after an active stage, is there a chance it can get better (the curvature straightens out somewhat) or does it just stay frozen in whatever angle it was at in the end of the active stage?
Another question... how would one know whether or not their plaque has "calcified"? Is that more a time issue, or does it look or feel different? I noticed a lot of people talking about a lump or indentation on their penis, but for me I can't see anything protruding, and other than feeling a little harder area on the top side, it's nothing that is real "obvious". I guess there's a part of me that hopes that since there doesn't seem to be a "ton" on plaque built up there sticking out that maybe it will eventually be able to work it's way out.
Sorry to ask all these questions. I suppose it's just a part of me trying to understand this whole thing a little better and take a peek at what the upcoming months may or may not hold. I know different people have different experiences, but I'd like to know of different things that "might" happen as I head towards the "latter" months of the active stage and then after that.
Despite feeling terribly depressed at the extreme angle the curve has built up to, I suppose I do feel somewhat lucky in that so far (knock on wood) pain hasn't really been an issue. Some dull pain or twinges now and then, but overall nothing that bothers me.
Thanks for letting me ask others about their issues with curvature and experiences.
sunsetsonfire,
Sorry to hear of your progression. Generally the active phase lasts for the first 12-18 months, during which your curve can get worse. In theory (if there is such a thing) after the active phase you become "stable" and your curve should stay the same. I'm sure you have read on th forum that many of us have tried several things, and you have started the meds and using the VED. Calcification is something that happens over time. After 18 months your palque can begin to calcify. But it is a fact that some never experience calcification and others experience flare ups in the "Active" stage. It is a strange disese that manifests itself differently in so many of us.
Les
Hi Les,
Thanks for your reply.
Could I ask something else? You mention that during the active stage it can get worse (as I've so far experienced). By the same token, can it also "improve"? Or is the curvature a one direction thing? I see on your posting signature that it says you are "1.5 yrs peyronies free". When one is peyronies free, does that mean you are basically back to "normal", or just that it isn't getting any worse? And if normal, did it get that way through the various treatments (VED, Pentox, injections, et al), or surgery?
Starting next Wednesday, I'm going to be getting the V injections. Not really looking forward to it, but at this point I'll try anything to get back to normal. It's kind of funny... when this started I was at a 35 - 45 degree angle. Now that I'm getting closer to 90, I would be happy to be at the 45 again.
Was your curvature ever near the 90 degree stage, or am I one of the more severe on this board? :(
Thanks for your time.
Dave
Hi.......does anyone know of a source to obtain Potaba without a prescription? The VA Doc recommended it to me along with Vitamin E. However, the VA does not provide this Rx.
Any help on this question?
Regarding the Potaba, it is the same thing as PABA, which can be bought at
any health food store. I bought the Solgar brand recently (550mg dose), and
used it for about a week before experiencing some gastric disturbances. I'm avoiding it for now, but intend to try again in about a week or two.
Like you, I am also using Vitamin E - 800mg per day.
Zeppo
sunsetsonfire,
Yes I consider myself Peyronies free. I am back to normal but it was a long journey to get to that point. Many of the ones who have been on this forum for awhile know my story. You can click on the "My history" link at the bottom of any of my posts and it will take you to my history on this forum. I also have it posted at the following web link:
http://home.comcast.net/~lcwillisjr (http://home.comcast.net/~lcwillisjr)
Feel free to email me at lcwillisjr@comcast.net
I've had the V injections and can tell you what to prepare for.
Les
I'm new here, please forgive me if I am asking stupid questions.
Is a nocturnal erection a good or a bad thing to have?
I've been a Peyronies sufferer for about 6 months. I can count on one hand
the number of nocturnal erections I had during my life prior to becoming a Peyronies Disease victim.
These days, nocturnal erections are becoming a regular nuisance for me. Perhaps I
had them on a regular basis in my pre-Peyronies Disease life, but never noticed them because I
didn't have any pain associated with erections in those days.
I am averaging about two per week, and last night I had three. In my case, these erections are painful, and cause me to wake up in the middle of the night, thus losing sleep. Last night, I had to wait ten minutes for the first one to subside. Aside from sleeping pills, is there anything that can be taken to eliminate these middle-of-the night nuisances?
Regarding erections in general, is it best to try to avoid them, and let the Penis try
to heal itself of Peyronies? Do erections cause the disease to progress more rapidly?
The more erections, the better. If you do not have erections, the fibrosis will advance. Erections are like exercise. It might be painful, the but the alternative is an increased state of the condition and no erections period. If possible, take painkillers such as motrin, ibuprofin, etc. until you can get on pentox.
It has now been 5 months since the onset of Peyronie. The bend has increased but pain has subsided. Intercourse is difficult but possible. The bend does not appear until the penis is fully erect. Inserting the penis before fully erect I think keeps the penis more straight in the vagina. I have been taking pentox 400 2x day. L-argine, MSM, Vit E, Vit C, and ibuprofen. Any suggestions on how long to keep taking the Pentox before throwing in the towel? Next step perhaps VED.
Chiguy,
Thanks for your feedback. Is it your opionion that frequent erections may help reverse some of the fibrosis? The only problem I am having with erections is that they hurt like hell.
Thanks, Zeppo
Without any treatment, I don't think erections can reverse fibrosis. Apparently, 1/3 of cases do resolve on their own, but there is no indication it is from erections only. Erections may help prevent the spread of fibrosis. If the fibrosis continues and you don't get erections, this could cause ED.
I went through the same thing for a few months, then one day the pain subsided. Motrin, ibuprofin, or alleve may help with some of the pain. Try to get on the pentox as that should clear the inflammation and thus the pain.
I just came across this. My take is, night time erections are normal and critical to good health. I suspect the lack of them could be a factor in developing peyronies.
During a normal night of sleep, the penis may be erect for a total time of from one hour to as long as three and a half hours. Research urologists have found that the increased blood flow during these nocturnal penile tumescence episodes may prevent excessive collagen from forming in the erectile tissues of the penis. They are aware that the increased fiber formation in the erectile tissues could lead to tissue-cell death and eventual loss of erectile function.
Hi. I was wondering whether Peyronies could result in one side less rigid than the other. I can get an erection, but the left hand side is softer and slightly narrower, but having searched on here and online, I can't seem to see whether this is a sympton or not? Would this affect the ability to have sex? The other side seems perfectly fine.
eng man
First you need ot go to a good Male Sexual Function doctor and have a Color Doppler to determine exactly what the problem is.
Jackp
You need to go get the penile doppler ultrasound done through a male sexual function specialist. It is the only way to truly tell. A lot of times, the doctor misdiagnoses the issue. Also, it is the only way to tell where the plaque, if any, is located. Where are you located? We can point you in the direction of a good doctor.
Quote from: eng_man on February 17, 2010, 05:42:07 AM
Hi. I was wondering whether Peyronies could result in one side less rigid than the other. I can get an erection, but the left hand side is softer and slightly narrower, but having searched on here and online, I can't seem to see whether this is a sympton or not? Would this affect the ability to have sex? The other side seems perfectly fine.
I'm not aware of any symptoms of this type related to Peyronies disease. But you definitely have a different type of symptom. It would make sense to get it checked out anyway.
As far as whether will affect the abilty for sex, I think only you can answer that one.
Les
Hello everybody. I'm new to this forum (age 23). I suffer from peyronies disease since december 2008.
Multiple plaques developed on both sides and on top of the penis and this made the upperhalf shorter, less width and slightly curved upwards and to the right. It became much harder to get and maintain an erection.
I diagnosed the disease myself (to stupid / embarrest, i did not look for help at this moment) and decided to wait and see, convinced that I could belong to the group that spontaniously recovered. After a period of initial progress (some plaques seemed to get softer, small increase in width and lenght) I was very upset to see that although the plaques sometimes became really soft (almost like normal tissue), they were all still there.
I've been to an urologist (I'm from the Netherlands), fairly late (after about 1 year) who told me that there was no effective treatment available.
My question is: isn't all 'progress' in the positive sense based on softening of the plaques? Is it even possible for areas of plaque to return to normal tissue in some of the latter stages of the disease (now +15 months).
I'm curious how the plaques developed in people who really made progress with the VED (like Angus and Old Man). Did the plaques also shrink, or did they only soften?
I also want to thank you for making and supporting this forum. For almost a year this disease was killing me mentally. Reading some of the stories here made it clear that so many others of all ages are dealing with this affliction. This has been very supportive for me in dealing with the psychological aspects and being able to talk about it to people I trust.
Thank you!
I would say that plaques softening is a positive sign, but doesn't mean that the condition is going to reverse. A few top urologists have stated before that sometimes after years, they cannot feel plaque at all. This doesn't mean the penis has returned to normal, but perhaps it at least does mean that the active cycle of the conditon is over, and some healing is taking place. Using pentox (and mechanical therapies - VED etc), perhaps aids this process, and offers at least some chance of improving your condition. The positive thing about this approach, is that pentox and VED therapy has helped some individuals with longterm peyrone's disease, so it's worth giving this approach a year or so, to see if it benefits you.
Thank you for your answer Newguy. From what I've read on this forum, complete healing of this condition is most likely impossible for anyone, as scars don't tend to regenerate / restore to normal tissue.
At this moment I'm finding it very hard to start some kind of real treatment plan, because of the slow and sometimes mixed results. You also have to start spending a lot of time 'working' with this condition and that really gets me down, because all the time you are reminded of it.
For now I think I start living as healthy as possible and try to focus on more positive things. I don't want to let this ruin all the good things in life.
Quote from: Francis on March 20, 2010, 02:15:38 PM
Thank you for your answer Newguy. From what I've read on this forum, complete healing of this condition is most likely impossible for anyone, as scars don't tend to regenerate / restore to normal tissue.
At this moment I'm finding it very hard to start some kind of real treatment plan, because of the slow and sometimes mixed results. You also have to start spending a lot of time 'working' with this condition and that really gets me down, because all the time you are reminded of it.
For now I think I start living as healthy as possible and try to focus on more positive things. I don't want to let this ruin all the good things in life.
The matter is difficult to deal with too, as there are different definitions for what the term 'healing' means to a person. For some people here, healing means that pain is gone, and their condition is stable (curvature not worsening etc), putting them in a position to either explore pentox/ved etc, or have surgery. For others 'healing' means that their condition is stable, but they wish to reverse some of the damage done, with the aforementioned treatments.
We do not have pentox can have 'some' impact on the composition of plaque, since it has been shown to stop progression in some individuals, and reverse in somewhat in others. We also know that traction and VED therapy can stretch the scar tissue somewhat and help restore some elasticity to scar tissue. I agree though, that scar tissue isn't typically something that lends itself is returning completely back to normal.
You're right that treatments can be slow. VED useage, and oral supplements like pentox are certainly not one month wonders, and require quite some time to see if there is a benefit in using them. Peyronie's certainly can have an impact on a persons mindset, and a persons priorities will probably dictate how they approach the condition. There isn't a right or wrong way to do that as such. I'm glad you're living healthily. That's something all people should try to do!!
Hello guys ,
I can see there are lot of experts here on this matter and i would realy appreciate some help.I m from Croatia so please sorry for my bad english yet i hope you will be able to understand me.Few days ago I detected something that really disturbed me and I need advice.I am 30 years old and had history of chronic prostatitis and thats about it.For first time in my life I could not get erection and I was really trying to.But after half an hour of insisting i kind of did get some sort of partial erection.Now here is scary part;erection was normal at root of penis and kind of in penis head but in middle of penis it was thin and squezeed.I could not ejaculate ofcourse because it was generally soft but scene frightened me so much.
First thing i saw on net was this "hourglass" term and it was of course conected with Peyronie.Now what I have to say is that I DONT have any Lump ,plaque or anything I could feel on penis and never had.Also I do not feel ANY kind of pain whatsoever.Beside this hourglass efect no curvature visible.But still no erection.For past two months I had these strange feeling in urethra and dribbling and leaking but nothing hard.Also have been putting for couple of days Bepanthen oinment on shaft so dont know is this have to do anything with that.Help please ,I am terrified .Do you think it is Peyronie or Erectile Dysfunction or some kind of infection.Is this plaqueand pain thing MUSt for Peyronie or it can somply start by Hourglass effect?
THX in advance ???
Joos, The "hourglass effect" with Peyronie's happens ONLY with full erection. So what you are observing is not necessarily meaningful and may be due to a number of other factors other than Peyronie's. What you really need to deal with is the lack of ability to achieve erections. The most likely culprit is either hormonal or circulatory. In either case you need to make sure your waist circumference is not excessive. The measurement around your waist should be less than 101cm. If your waist size is greater than that, you need to modify your diet to get it lower. Inability to achieve erections and risk of heart disease and diabetes go together. You need to get control of your health. The other issue is vitamin D. You should have blood levels of 50-70ng/ml of vitamin D. Less than that can result in metabolic and hormonal issues that cause inability to achieve erections AND many other diseases. You need to be getting adequate vitamin D in the softgel form to make sure you are getting enough. Ideally you should have your doctors help with this. I wish you the best. If you do have an hourglass form WITH a HARD erection, that is evidence of Peyronie's with or without palpable plaque. But you need to rule out the other stuff first, since, unlike Peyronie's, the effects can be life threatening. - George
thank you so much George for your swift answer
You did kind of helped me but...
I am generally very helthy person .Other than urinary tract problems I am almost perfectly healthy.Just few months ago I did full check on my body at private clinic even with colonoscopy and gastroscopy.All in my blood is ok except slightly high cholesterol.Now considering my weight ...I am still relativly active sportsman ,been training MMA(ultimate fight) for years so my size is quite big but it is pretty much all build up muscles.I am 1m 95cm and 105 kg,so it is a big weight but considering my height and built...
This was first time that this occured to me , so ...
You think this coulb be connected with urethra thing/urethritis...
Joos, Its about inflammation. Systemic inflammation. Inflammation is caused by too much omental fat. This is fat on the INSIDE of the body, not on the outside. It is determined by waist circumference. One can be VERY fit and still have too much omental fat. Cholesterol levels are a very good measure of omental fat. Higher level of omental fat causes inflammation which causes cholesterol levels to rise. Low vitamin D levels ALSO cause inflammation which ALSO causes cholesterol levels to rise. Any rise in inflammation affects hormone levels and leads to ED. All of this can also lead to urethritis.
The solution is to eliminate refined carbs (white stuff ... sugars, refined grain products, etc.) from the diet and add Vitamin D to the diet. Also get rid of bad fats, especially trans fats. Good fats such as fish oil are very important, but watch out for contamination. Cod liver oil is BAD because it contains Vitamin A. Vitamin A increases inflammation by competing with Vitamin D. One should never take Vitamin A, but should use beta-carotene instead. Exercise is also important, but you are probably getting more than enough of that. Diet and Vitamin D are the big suspects. - George
Right on the money.
I recently learned about "normal weight obesity," also known as "skinny fat." I am told this is common among people who quickly lose a lot of weight. By reducing the fat layer right under the skin, their muscles now show more, and they look lean, but their body mass index is above the healthy range. It is a ratio of muscle mass to fat tissue (muscle weighs more). Unless they are very careful with their nutrition and exercise, the weight they lose can be more muscle than adipose tissue. Skin fold and bioelectric impedance measurements may show normal or even athletic body composition, but that is misleading, because they do not measure the underlying fat.
Balanced nutrition (fat, carbs, protein) of adequate total calories, strength training, and limited "fat burning" cardio, are all necessary to avoid this. In my opinion, Dr. Atkins was wrong; adequate carbs are critically important, especially as the muscle to fat ratio improves. Lots of protein without carbs, won't get the building blocks into the muscle fiber.
Update:
It's been more than 6 months since the onset of peyronie's. I had been taking Pentox along with other supplements. The pain has subsided, but no other improvement. I exhibit an acute bend at the upper end of my penis. This makes intercourse difficult but not impossible. I have now stopped taking the pentox and am now using a VED. Perhaps in a month i will see some progress. This forum has been a great source of comfort and information. Thanks to all.
Does anyone know how long it takes a for a plaque to pop up and can be felt after an injury? I was using the fast size and two weeks ago I woke up the next morning and noticed something wasnt right I must of stretched a little too much apparently. Its been two weeks now have and had a lot of pain & soreness like you do with Peyronies Disease when a new plaque starts. Now I notice an additional lump or plaque near the base.
Is it possable to have a plaque pop up and be able to feel it in two weeks time.
Quote from: Woodman on March 24, 2010, 01:32:35 PM
Does anyone know how long it takes a for a plaque to pop up and can be felt after an injury? I was using the fast size and two weeks ago I woke up the next morning and noticed something wasnt right I must of stretched a little too much apparently. Its been two weeks now have and had a lot of pain & soreness like you do with Peyronies Disease when a new plaque starts. Now I notice an additional lump or plaque near the base.
Is it possable to have a plaque pop up and be able to feel it in two weeks time.
It sounds like the plaque position was troubling for you in relation to VED use, and that traction had been more promising, so I'm sorry to hear about this setback. I'm sure others will chip in, but I don't think there is a typical amount of time at which plaque appears. I'm say, to stay on pentox etc and keep away from any mechanical methods (traction, ved) for the time being, until the pain is gone and you know where you stand.
I am a fairly new Peyronies patient, diagnosed in October, 2009.
From what I've read on this site, it appears that in the active (acute) stage of the disease, which lasts from 12 to 18 months, calcification has not yet occurred. I guess I am still in that stage of the disease. Whenever I have an erection, it is accompanied by pain, but when flacid there is no pain.
Question: when calcification occurs, and the disease is no longer in the active stage, will the erection pain disappear, or will it persist for the rest of my life?
Thanks
Quote from: zeppo on March 27, 2010, 10:06:28 AM
I am a fairly new Peyronies patient, diagnosed in October, 2009.
From what I've read on this site, it appears that in the active (acute) stage of the disease, which lasts from 12 to 18 months, calcification has not yet occurred. I guess I am still in that stage of the disease. Whenever I have an erection, it is accompanied by pain, but when flacid there is no pain.
Question: when calcification occurs, and the disease is no longer in the active stage, will the erection pain disappear, or will it persist for the rest of my life?
Thanks
Some individuals have troubling issues with very long term pain, however you'll be happy to know that the vast majority of men with peyronie's disease do not. It varies from person to person, but it's quite uncommon he suffer pain after 18 months - 2 years. There is a thread on the site for men suffering pain for unusual amounts of time, but I don't think you need to worry about that issue right now.
From reading through your posts, I notice that you tried PABA but it disagreed with you, and now you're just taking vitamin E. I would advise you to start taking Pentox, as that really is the only oral supplement with firm science to back it up. Try combining it with l-arginine and viagra. I would discuss this with your doctor, as it seems like a sensible move , especially as you haven't been suffering with peyronie's for all that long really.
Thanks for the info NewGuy.
Are you currently using, Pentox, and l-arginine? Has this protocol reduced the curvature?
Thanks, Zeppo
Quote from: zeppo on March 27, 2010, 05:48:15 PM
Thanks for the info NewGuy.
Are you currently using, Pentox, and l-arginine? Has this protocol reduced the curvature?
Thanks, Zeppo
Hi Zeppo,
My situation is rather complex. I'd suffered from peyronie's for many years before using any treatment. Over that time I'd say it either got slightly worse over the yers, or t the very least didn't get any better. Unfortunately I managed to inure myself again, so there is possibly worse to come in my case (though I hope not). However, after I started taking pentox, l-arginine, viagra combo, I would say that (from looking at photo comparisons and my own view) that progress has definitely been made, yes. Again, I'd say that this has been gradual, and has probably levelled out now. I think people should take pentox for at least a year, and use the VED and/or traction. Evereything at your disposal really. Health living, exercise etc. The after a couple of years re-evaluate your position.
newguy:
I totally agree with you about using the VED therapy regardless of what other treatments one follows. The added oxygen flow into and out of the penile erectile tissues can only help. In my experience with working with many guys in my hometown has proven to me that the VED therapy is one of the best effective "remedy" for Peyronies Disease symptoms. And, as a bonus, it gives one back the ability to have good erections for sexual activity.
My total desire for guys on this forum is to realize the value of VED therapy. I strongly and highly recommend VED usage over any other form of therapy. Oral medications that enhance blood flow and help with pain are an added plus factor as well.
In my own case, the VED therapy worked when all else had failed over the now 56 plus years of having several bouts of Peyronies Disease.
Old Man
Hey everybody,
I thought I'd provide a quick update on my condition.
From what I can tell, I one of the few who within a few months of noticing something looked different started with some of the board's more popular treatments, big time.
Briefly, in late December of 2008 I noticed a slight upward bend, then a dent in January. By the following April I was using the VED and L-Arginine, ALC, and all natural vitamin E. I added Pentox in May.
I became extememly depressed about the matter in April, thanks in part to reading many posts on this board. I'd didn't know Peyronies Disease was even possible. I couldn't get an erection for weeks that April...I thought I was doomed.
But, despite the reality our forum offers I willingly followed the advice and encouragement of our board's veterans.
Over the summer and fall of 2009 my upward curve became mostly eliminated, but the dent appeared on the opposite side.
Over the fall the dents gave me a slight hourglass effect.
But, throughout this whole time my erections were becoming great.
Over the last several months is looks like the dent is not as apparent as before. My erections are better than ever.
So, as I approach 16 months of knowing about the condition, I am extremely thankful that my penis is as straight as it ever was and the hourglass effect is not that noticeable and looks like its improving. It's more noticeable when I'm partially erect.
Hopefully, I am stable. It seems to be. And, the best news is that I rarely think about the situation. I never thought that would be possible.
I wonder sometimes if I had not started with the VED, Pentox and supplements if my situation would be different today. But, I prayed many, many nights that my situation would not get extreme and plodded along with the VED everyday.
Oh, I used Viagra nightly from April of 2009 until about a month or so ago.
I'll post a more detailed history in several weeks.
thanks everyone.
CF
Time for little update ,
considering my situation I am still in doubt do I have Peyronie or not.So let me introduce some new facts.First of all my penis sometimes hurt inside (urethra) when flacid ,but never hurts when erected.Now for this couple of weeks I have been having trouble getting erection but few days ago I managed to get full erection and my penis looked normal as it used to be when full erected.Problem is that at beginig of erection my penis is hard at the base, but soft at the top, and from that comes that hourglass effect.My penis simply looks thin in middle also when is flacid ,right in portion below penis head.When I manage to fully erect it it looks normal as always was.It seems like there is some kind of obstruction in middle of my penis???Could this be Peyronie? Or is this some form of ED?I repeat ,I basicly do not feel pain of any kind,dont have curvature,but when I have partial erection I have this hourglass effect.And also during night sometimes I have full erections and sometimes no or partial for couple of days...
C'mon George ...help...
You are so helpfull people
thanks
Very honestly Joos, I see nothing abnormal about the hourglass thing. The pain is another story, but that is going to take a urologist to figure out. If your erection itself looks normal when hard and there are no palpable lumps when flaccid, that does not indicate Peyronie's to me. Others can feel free to correct me if I am missing something here. - George
You are so helpfull people
Thanks again George,
See thing thats bodering me is the fact that my penis never looked like this,and that is the fact number 1 .My penis has this hourglass appereance (not always) when flaccid , at base is wide and soft , I would say normal but than right below penis head is thin and stiff ,not hard but I can feel edges all around it.When I feel excited my base reacts and my upper part stays thin and stiff.After some time or little =manual= help it normaly erects .I have perfectly normal ejaculations and erections with no pain but evident dificulty in achiving erections even during night!I have this pain in urethra and exactly in that part my penis is thin from outside but I NEVER heard that this could happen because of prostatitis/urethritis.However today I am getting a course of antibiotics ,see if that is going to resolve something,but try to understand me MY penis never looked or behaved this way.Know it doesnt sound exactly like PE but never heard for anything similar before.My concern is that this is some kind of inital stadium of PE since this started only couple weeks ago!
Once again big thanks... ??? ??? ???
thanks
[/quote]
i just recived a course of Doxycycline (Vibramicin) for 10 days , so we will see is urethritis/prostatitis causing this weird thing .Also as you mentioned before I started taking vitamin D , plus on my own vitamin E(all from TwinLab) .Any experiences with quercetin???
Quote from: Woodman on December 02, 2009, 02:42:47 AM
I wanted to ask you guys who have experianced shinkage from Peyronies Disease your experiance. Did it just come on then come to a stopping point quickly or do you noticed it getting worse slowly. I notice after 18 to 19 months I started to shrink. I ve loss as of today a little more then a half an inch in length and some girth. I ve now had Peyronies Disease for about 30 months.
Thanks
Woodman
It seems like a nightmare when you say that it has been 30 nightmares. Right now, it seems as if it has been only a short time with this Peyronies Disease, but it has been some time.....
I have had the same pain, the bend and then the shrinkage and it seemed to come on and then go away as the urologist said it would. Since I had so many health issues, I really didn't know what to do and this Peyronies Disease was 24/7 in my life. However, I wanted to do something about it, so I started the Acupuncture since it would not interfere with the medications that I was taking. Since the acupuncture and some natural Chinese herbs, it seems as if the "dents" have gone away and it seems that I don't feel anything at the base of the shaft and the upper part of it. I have had more erections during the night since I started the acupuncture.
However I have not had any increase in girth or length as I was hoping. I ended my last session this past week with acupuncture because I was too anxious to start the VED therapy which I read so much about in the Forum. I ordered my VED this past week and hopefully it will be here next week. If I have any problems I am sure I will be helped by the good people on the forum.
I will see my specialist this Tuesday to see what he thinks and if he will recommend some course of action. I wish that I had done my research earlier about Peyronies Disease.
Should I tell my Doctor that I will be doing the VED therapy? I have read pros and cons to this.
Thank you all
Ymenow
Ymenow:
By all means tell your doctor that you are using the VED therapy. It is non invasive, and does not interfere with any meds or other treatment you are on, etc. He may or may not agree with your decision to start the vacuum therapy, but there should be no problems with your using it as far as any medical reason is concerned, etc. It should be your decision, not his/hers.
The success rate of VED therapy seems to questionable by some doctors, but if you go by the success rate of the guys on this forum, it is successful in most cases. However, each and every case of Peyronies Disease is different from any other and the results of each are different. You only have to trust your judgment about its use. Just use extreme caution with the amount of vacuum that you use and don't overpump while using the 26 week protocol posted in the VED board section of the forum.
The least result you should achieve is better erections, a more healthy penis and if there is any recovery of size and making the penis straighter, that would be a plus.
There is a lot of experience with VED usage by members of this forum, so feel free to ask any and all questions that may arise when you get your device. We are all here to help each other.
Old Man
I saw the shrinking as well, loss of length, but more loss of girth as well. It came on more in the beginning, the pentox helped me regain size, as did the VED. I also noticed a hardening of the tissue, which we know thing comes from an over active immune system attacking our own penis tissues, the constant inflammation leads to hardening, shrinking, and deformity of all kinds. Also since the tissue is damaged it leads to venous leakage.
Comebackid
I am into the B cylinder and it took some adjustment. Finally I got the right fit with the outer ring and got a good vacuum. I was surprised that it felt different in the B cylinder and the shaft hit the sides except for the right lower part of the shaft. Could this be the plaque area where it is not responding to the vacuum? I also noted that I didn't get the length as in the A tubing so I understood that part of it. Will this plaque break down and I will eventually see the whole part of the shaft fill the cylinder? The posts have been very helpful and all expressed improvement while using the VED.
The best way to know that you are doing the right thing is by checking it out with those who have been through the experience; hence, I am thankful (CBK OLD MAN and others) for any information I can get. My doctors would not say yes or no so I am going with my instincts in this matter. I am 66 and not giving up anything and I believe my wife is definitely on my side of the issue.
My wife believes that there is improvement in the erection quality....When will I be ready for the Klieg lights?
ymn
wmn
YMENOW,
I am in my 15th week and all I can really tell you is that in my opinion, it is a slow process and you just do it on a regular basis, don't over pump and don't get in a hurry. For me, my results seem to vary from week to week and even day to day as far as the amount of stretch I feel and even how engorged with blood my penis gets.
Don't expect any quick results from the VED and you won't be disappointed. I'm sure Old Man will agree; you have to be in it for the long haul and you have to be patient. It took me about 10 weeks to just get comfortable with whole thing and I'm not really expecting to be healed in 26 weeks. If I am, I'll be thrilled to death, but if I'm healed in 52 weeks, I'll still be thrilled.
The way I'm looking at it is...at least I'm doing something that has a good chance if helping me and if I don't over pump the VED, I'm not going to hurt myself.
I hope I don't sound pessimistic; I just think it's going to take a long time and no one said it was going to be easy.
GS
Thanks so much for your support GS and others.
I took my 3 cyl VED device which I thought would be questioned at the airport and it wasn't on my recent trip. After reading some posts here, I figured what the hell. I had no problem at through security.
However I wasn't able to use it everyday, and I felt bad about it since it has been helping me a lot. I wanted to go home and get back to my routine without letting up on my therapy. So I guess I am really into getting some improvement. I know thus far I am!!! Before my start with the protocol, I felt I lost my manhood and was disappointing my wife, but now I feel good. I am in the B cyl and doing well except for this sidetrip and I don't know if I have to start with week one again. I think I can "catch up" and resume the 26 protocol?
I am still hoping for the best and as you, I am worried about negative affects of the therapy if I "over pump". I can't believe that I am doing this in the "twilight of my years" and I totally have empathy for those who have to cope with this in their younger years. It is terrible for anyone to have to go thru this. I am also fortunate that I can talk to someone who has the same fears and hopes that I do. I feel a great deal of support from everyone here.
My wife is supportive of what I am doing which has helped me tremendously.
ymn
Glad to hear that the VED is working out well for you, ymn. Please do continue to keep us in the loop!!
I am still in a big concerne about my penis behaviour and I will soon visit another urologist.Even though George merely convinced me that I dont have Peyronies Disease , I encounter one element that could easily change your opinions.Well its hard to tell am i just paranoic or what but It seems to me that I have some sort of vein/cord like thing that I am not sure I ever saw there or I simply did not care.Just on the half of my penis I noticed something raised on the right side but I was convinced that it was just vein .NOw thing is that it is just a couple of milimeters down of area where I reported narrowing (hourglass effect) ,however I am not sure that it is suposed to be there.It is basicly vein like ,1 cm long or more ,horisontaly positioned identicaly like vein in root of my penis, just this one is harder to be indentified as vein.What I wanna ask Is there a way you could describe this plaque/lump/bump or are there any pictures of this things,not erections but this lumps and does this sound to you as lump?It is not painfull ,at erections it raises a little,just not sure could this be plaque or not.I still have weird erections ,problems at getting one,things start at root of penis but in middle stays thin but when I achive full erection I have no curvature whatsoever and no pain.My problem remains hourglass looking penis when flaccid(never looked like this) and during process of getting erected.Is pain thing must for peyronie ? Is it possible if that is what I describe lump that it could cause effect even on side where there is no lump? Doctors suck in Croatia, so people help.
thanks in advance :-\
Joos,
Pain is not always associated with Peyronie's: some men feel pain and others don't.
Peyronie's lumps can be different in different men. Some men have long rope or cord-like areas of scar tissue while other men have lumps. Sometimes the lumps are too small to be felt by someone who is not a doctor. When I had an ultrasound, the doctor said that I have a thin sheet of scar tissue where I have the hourglass shape. Thin scar tissue can still stretch, so that is probably why I have hourglassing but I don't have much curvature. The scar tissue of Peyronie's can take many forms and an ultrasound is probably the best way to see what kind you have.
If you do not have pain, curvature or erectile dysfunction I would suggest you try not obsessing about it. If you do have erectile dysfunction, mention that to the urologist and get treatment for that. It's possible that you don't have Peyronie's disease, which would be great! It's also possible that you do have it, but only a mild form. Best of luck.
-Skjaldborg
Thanks for your prompt answer
See,thing thats been killing me is the fact that I dont know did I accidentally cause this to myself.I had issue with balanitis for long time and decided to leave canesten cream and try with some mild neutral cream.I was told to use Bepanthen(panthenol) cream but I was mistakenly given with panthenol ointment(BABY) even though I heard that was also given for treatment of penis skin.I used that ointment for only one night and felt mild discomfort and next morning washed my penis.Thing is that after that for the first time I felt and saw problems regrading ED and weird shape.Now do you realy think that some baby ointment used for nappy rash even thought not ment for penises could cause some significant damage to my penis in one night!!!I hardly belive that but that is the fact thus possibly just weird case of circumstances.Is it possible that even after some "trauma" Peyronies Disease could instantly develop over two or three days?Or it takes some time and process?I know you all think ,why the hell you just dont go to your urologist,and I was there one month ago and he just smiled and didnt even look down there.I have hzistory of really bad episodes of bacterical prostatitis and urologists didnt help me almost nothing.Currently using TwinLab E200 and Quercetin +C,plus selen and zinc.
Thanks once more
joos - For peace of mind maybe seeing another urologist isn't a bad idea. If you can see one with good knowledge of peyronie's disease, then hopefully that provide the clarification that you are seeking.
Hi,
I'm new to this board so I'm not sure what to do here. About 1.5 years ago I mysteriously can up with a painfully bent erection. Saw a urologist and he was pretty stunned as the curve is 90 degrees +. I've taken vitamin E and some other med but nothing has changed with this curve. In the last 8 weeks, not only do I have this nasty curve, but I also have an hour glass shape! I have no problems getting an erection or having an orgasm ... but having sex with this curve is a nightmare and embarrassing. I have a Dr appointment next week ... haven't seen him for 9 months. I've read about ultra sounds and VED Therapy and I think I may bring this up when I see him.
Any advice from you guys on what I should ask the Dr?
::)
Zorro - It's positive that you are still able to gain erections. I advise you to print off the pentoxifylline evidence and take that to your urologist:
https://www.peyroniesforum.net/index.php/topic,772.0.html
https://www.peyroniesforum.net/index.php/topic,1004.0.html
It has been shown to be effective in some men for helping with peyronie's disease. In combination with a VED you at least will be actively involved in a daily proactive routine designed to help with your condition. That the urologist was so stunned at seeing a bent penis doesn't bode well for his abilities at dealing with peyronie's patients. Hopefully, if you're seeing the same guy, the studies you print off and show him will be enough to convince him to prescribe pentox to you.
Here's a recent VED study too, from the resource library: https://www.peyroniesforum.net/index.php?action=dlattach;topic=1218.0;attach=371
Quote from: Zorro on July 14, 2010, 12:05:14 PM
Any advice from you guys on what I should ask the Dr?
::)
1. You need to ask about his/her treatment of Peyronies Disease and if this is his/her specialty area.
2. Don't settle for just a visual examination and a "I think you have Peyronies Disease, there is nothing you can do but wait and see". >:(
3. You can bring up the VED and other methods but be prepared to be told "those don't work".
4. At best see he/she will write you a script for Pentox.
5. Be prepared to find another urologist who specializes in Peyronies Disease and/or sexual health.
But just my opinion. ;)
Hey all, it has been some time since i visited the forum. For those not familiar with my situation, I had an injury during sex due to an overzealous woman slamming her weight into me while i was not fully hard and bending the tip of my penis up. Scar tissue immediately formed.
It has been 15 months. The pain has all but gone away. My erections looks normal, other than exxagerating the upward and to the left bend that i had before. I have gotten over what happened but something that still causes me huge amounts of anxiety is just the scar tissue in my flaccid penis and sometimes not being able to fully void all urine causing dripping after. Every time i go to the restroom I am reminded of it.
Question. Does this injury related scar tissue take over your penis over time? I am 25. Is this scar tissue (top third of penis hard and seems like top 2/3rds when flaccid) going to change any? It has been 15months since injury. The fact that my scar tissue is caused from injury and not spontaneous peyronies....does anyone know if it is now "stable" Thanks in advance.
From what I understand from my time reading around here and other places is that there is a stabilizing stage for most at around 12-15 months as to which it stops progressing. Although for most there seems to be a stabilizing state there may be some that extend past the 12-15 months of which the inflammation continues. After getting P.D. it is also possible for flareups to happen at anytime since you have been proven to be susceptible to the condition, although since yours is injury related it may be less likely for it to pop up randomly, but I could be wrong. But no from my understanding once it is stable the scar will not expand to encompass the entire shaft unless it is reinjuried, but with the possible side effects of less rigid erection you may have to be more careful than before. Are you taking anything like ALC, Pentox or anything that may help with the pain?
I'm also pretty young being only 22 and have the same issue with the 1/2 towards the head being harder when flaccid, although I don't have a curve (maybe 1-5 degrees to the right due to indentations) it has been causing a bottle neck and also my shaft now looks like this | ( with an indent on the right including a lot of smaller ones with nodules.
YoungOne - If your condition appears to be stable and isn't painful this is a good sign. It's hard to give definitive answers with peyronie's, but some well known urologists operate on individuals after the condition has been stable for a year. By that logic, we can assume that they tend to believe that it commonly does not change after that time. From being around here, I would say that there are quite a few exceptions to that rule, though it's entirely possible that more people with worse or prolonged cases of peyronie's find their way here, compared with those with more textbook cases.
Quote from: YoungOne on August 11, 2010, 07:42:36 PM
Question. Does this injury related scar tissue take over your penis over time? I am 25. Is this scar tissue (top third of penis hard and seems like top 2/3rds when flaccid) going to change any? It has been 15months since injury. The fact that my scar tissue is caused from injury and not spontaneous peyronies....does anyone know if it is now "stable" Thanks in advance.
My experience was a long period of stability from 1999 to about 2005, but then it changed - possibly owing to a re-injury. It stabilized again in early 2007, and after it had been stable for some time I got the injections (2008). That destabilized everything, and then I had to wait for the surgery, which I just had last month.
Mine was an extreme case - although the original injury was pretty much exactly what you went through. I recommend developing a healthy sense of humour and a huge amount of patience - do what you can to deal with it and keep reminding yourself that a man is more than the sum of his parts.
Quote from: Brightdog on August 12, 2010, 02:20:42 PM
My experience was a long period of stability from 1999 to about 2005, but then it changed - possibly owing to a re-injury. It stabilized again in early 2007, and after it had been stable for some time I got the injections (2008). That destabilized everything, and then I had to wait for the surgery, which I just had last month.
I guess either:
1) The condition is ever present once activated, and can randomly flare up even years after the original injury/occurence
2) It effectively heals, but due to either the shape of the penis, nature of the scarring or a susceptibility to the condition further bouts are much more likely to occur than in the general population
I would tend to go with your thought (2). It begs the question of what a previous sufferer of peyronie's should to reduce changes of re-occurence. They could minimise certain sex acts perhpas, or use the VED a few times a week to help limit any potential problems down the line. I wonder if very long term pentox use could also be an option. I'm not sure what the health effects of such long term use would be. Of course, it the condition reaches the point of being 90 degrees +, surgical options are probably the main chance of a successful resolution.
I too have not replyed to the poll. There is simply not a category that I fit in.
I first developed Peyronies Disease about 12 years ago, no nodule, no pain, simply a "flat spot" on the left side about 1" long and smaller flat spots around the base on both sides, no curvature. The main things I noticed were loss of length, and loss of rigidity. Even when I got a strong erection, the problems at the base kept it from being sufficiently strong enough for, as an example, sex with my wife on top. Everything still worked, just not very well.
I stayed this way up until about 2 months ago. I now have a large nodule (some are calling it a pea) in the middle of my penis about 1" from the end. I now have a slight bend to the left and pain. The "pea" changes size daily, even hourly. As a result of this recent development, I have now started to look into any and all possible treatments.
What causes the loss of length, girth, and width in men with Peyronie's? Is it just the plaque or the awkward angulation and curvature or a combination of both?
Quote from: snowydreams on December 13, 2010, 02:57:08 PM
What causes the loss of length, girth, and width in men with Peyronie's? Is it just the plaque or the awkward angulation and curvature or a combination of both?
I would say that it's a result of the plaque restricting the penis in various different ways.
Snowydreams
Think of your tunica like plastic wrap. Once damaged it is stuck in that shape and then the wound heals
With a plaque covering the sore.Then when you have an erection the shape of the erection is determined by the way it has healed.You know when you pull apart plastic wrap it is never the shape it once was.
That is why we use ved , traction, cialis and other oral suppliments to try to break down or pull apart the scar.So when you get Peyronie's the shape, width and girth is determined by the damaged area.This is why all our issues are different from one another.
Hope this helps you understand what is going on with you and us.
Fubar
There is a site called urosciences.com that sells a device to measure the degree of Peyronies
it is called Peyronies Disease Assessment Device.... Look to see if you have any interest in using this tool!
My doctor gave me mine. I am ok with using it but not every week maybe every month!
@do
You can have peyronies disease as they call it without a curvature. Sometimes my penis curves and sometimes its as straight as an arrow but I have erection problems too. What im getting at my erections are never the same and I wouldn't base your peyronies disease on a tool sorry folks. Measurements of your peyronies varies and your either getting better or getting worse you can just tell on your own. Give me another percentage.
Noway,
Mine was curved downward... at 55%, The tool was given to me to see my own progress over period of Injections. To measure the progress was useful in my own head and allowed me to see some light in the situation! My errections were painful. If there was no progress then it was going to be a implant surgery! I was lucky the pain disappeard and the curve slowly decreased and begain to turn around. Over the long haul yes the difference is visual. It was only a suggestion.... Good luck with yours.
Quote from: johndoe on June 29, 2007, 10:55:48 PM
Just to clarify I was using Collagenase but I ran out and didn't want to go back and get another prescription for it. It's also too expensive to keep as part of my regime which is actually the reason why I desperately sought other means i.e. EMS. I figured the machine only cost about 50 bucks and it last pretty much forever, just have to replace the batteries every once in a while. Vitamin E I can get at the store anytime for about 7 Bucks.
Note: Obviously I stressed the point that I'm in no way advocating anyone else to try this I think we all got that point, I also want to stress the fact that what might work for one person may not for another. I don't believe that there is one type of Peyronies Disease. I believe each of us have individualized cases and finding a "cure" is going to come down to trial and error anyway.
LAST UPDATE (Good News Bad News): I noticed that immediately after use of the EMS my penis in the flaccid state "hangs" pretty much straight as an arrow and my erections are "straighter" and stronger immediately after use (The Good News), unfortunately (and I'm not worrying about it yet) after about an hour or so my penis tends to return back to having a slight bend in the flaccid state and my erections are less straighter and not as strong. Like I said before, time can only tell if I've stumbled upon something. I saw a significant difference in the first 6 months of use and seemed to have plateaued a bit lately. I feel like the one year mark would be a fair indication point to see how the therapy has worked out. I'll post again when that time comes, I wish all the members here who suffer from this horrific disease the best, and sincerely hope that a "cure" is found soon so we men can go out into the world more confident and comfortable with ourselves.
JD over and out
Johndoe - How are you doing? Are you still on here ? I can see this was all from 7 years ago but wondered how you got along with the EMS treatment after a year or so?
I have an EMS/ TENS machine at home also