Progression of Peyronie's Disease

[tke1058]

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?

[ocelot556]

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.

[Iceman]

mine kill as well - just another pleasurable component of this disease - gotta love it

[Starting2looseHope]

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.

[necros]

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.

[newguy]

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.

 

[Hawk]

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

[newguy]

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?

[YoungOne]

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.

[Fred22]

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

[YoungOne]

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.

[newguy]

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..  

[George999]

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

[LWillisjr]

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

[necros]

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.

[newguy]

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.  

[cowboyfood]

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.

[Bertie]

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?

[newguy]

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?

[RichB]

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.

[ocelot556]

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.

[George999]

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

[RichB]

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.

[George999]

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.    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

[RichB]

That reminds me of the artificial heart... my gosh, what a modern world we live in...

[ocelot556]

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

[George999]

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

[Jackieo]

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!!

[YoungOne]

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?

[Hawk]

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.)

[YoungOne]

Thanks for the insight Hawk.

[newguy]

JackieO - Thanks very much for your detailed 'track your progress' post. It's a great way to tell if  progress if being made!

[Skjaldborg]

@ 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!

[newguy]

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?

[Hawk]

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?

[George999]

Skjaldborg,  Be sure to take the Pentox documents

HERE--> https://www.peyroniesforum.net/index.php/topic,772.0.html

AND

HERE-->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

[jackp]

Hawk

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

[newguy]

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!

[miller798]

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?   

[newguy]

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

[ggg953]

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.

[George999]

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

[hopeful74]

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!

[cowboyfood]

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

[hopeful74]

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!

[cowboyfood]

... 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

[VAlex]

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

[RichB]

VAlex,

I have had problems almost identical to yours. How has the pentox helped you?

[hopeful74]

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.

[Woodman]

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