Progression of Peyronie's Disease

[secondfourth]

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?

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i wonder if it is possible to post pic in this forum?

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Anyone can give me advice on

-if i am Peyronies Disease or Chordee or both not?

[ThisSux]

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?

[Old Man]

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

[lostlove]

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

[Old Man]

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

[Hawk]

.. 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.

[lost2]

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

[Hawk]

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.?

[lazarini]

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

[lost2]

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

[kevin]

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...  

[jaysum]

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.  

[dcaptain]

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.

[Hawk]

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?

[dcaptain]

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

[Hawk]

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.

[dcaptain]

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  

[roadblock]

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

[Old Man]

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

[roadblock]

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

[Old Man]

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

[roadblock]

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!)

[SteveW]

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.

[roadblock]

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.

[learn4life]

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 !

[roadblock]

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...

[roadblock]

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.

[bob]

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.

[roadblock]

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!

[Hawk]

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.

[Hawk]

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?

[Larry H]

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.

[Hawk]

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.  

[bob]

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

[roadblock]

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...

[bob]

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.

[Hawk]

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.

[Steve]

 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.

[roadblock]

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!

[Hawk]

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.

[ranger394]

hawk have some questions are you there

[roadblock]

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!

[emersonchief]

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)?

[jaysum]

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.

[roadblock]

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]

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.

[roadblock]

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?

[phil]

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

[totheleft]

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...........

[jaysum]

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.

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