Highlights of Progression Of Peyronies Disease

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 Ptolemy  Reply #523 on: March 5, 2008 at 12:46:16 PM » Quote  

I've only been on this forum since November 2007 and although I've spent hours reading through forum content I'm sure there is still much out there that I could learn. As I mention in the post below, I would like to know if all plaque is the same or if some of us develop worse plaque than others.

On one extreme, it seems that some develop considerable pain early in the peyronies development and plaque grows rapidly and often in multiple locations. Possibly I've misunderstood, but it seems that those that grow plaque quickly seem to find improvement or healing (loss of symptoms) quickly.

On the other extreme are those like myself where an injury develops into a very small lump, minimal or no pain is felt but the plaque continues to grow very slowly over multiple years. After 2 1/2 years of this I keep hoping I've reached the end of the growth phase and can then hope for some improvement. I am anxious to know what that improvement might look like.

I've read inconsistent reports from many on this forum on the value of plaque injections. Some argue they work and others have suggested the injections simply created more plaque locations. Since I'm in the beginning stage of Traction, I'm thinking I should be doing more to help soften the plaque. I believe I've read here that Dr Levine recommends injections with those using Traction.

I'm confident that the VED and Traction that I'm using are helping my penis in many ways (strengthening, lengthening, reducing the bend) but thus far I only see a worsening on my lone plaque location. I'm thinking of scheduling a telephone call with Dr Levine. I believe some has received value from the call. Possibly I would include my Uro on the call here in the Los Angeles area. He doesn't seem very knowledgeable on the latest.

Old Man « Reply #524 on: March 5, 2008 at 03:44:22 PM » Quote  


To give you a short answer about whether or not Peyronies Disease affects everyone the same way -- No, each and every case of Peyronies Disease is totally different from each other. There may be some similar effects, but they are never the same.

It is just like fingerprints, no two are alike. Each case to be treated as one only.

Old Man

Hawk  « Reply #525 on: March 5, 2008 at 04:13:39 PM » Quote  


As Old Man said, we don't have the answer you or that we want to hear.  Peyronies Disease is not alone in being an unpredictable disease.  Those of us that have faced prostate cancer want answers.  Is it likely that it metathesized to a distant site.  Is surgery, radiation, or hormone treatment the best?  What about a combination?  What are the side effects?  Are the side effects worse with one treatment or the other?    Will it kill me in spite of treatment and associated side effects?  Will it kill me if I do watchful waiting instead of treatment? (one may live 2 years, another 20 years.)

I can fire off 40 more such questions without pausing to take a breath.  Like many diseases Peyronies Disease varies widely.  Your story is simply that, "your story".  We know some things work sometimes.  We know some things that never do harm and that may work sometimes.  We know of spontaneous improvement (seldom if ever total reversal).  We know men that we can give no likely reason for: their development of Peyronies Disease, their continued progression of Peyronies Disease, their improvement of Peyronies Disease, the reason they only ever got a slight case of Peyronies Disease, or why it progressed with a rapid vengeance.
I personally think that conservative steady use of traction and/or the VED is the best current hope for treatment.  I think the PAV cocktail may enhance the traction/VED approach (of vise versa).  I think it is hard to argue against things as generally healthy as a mixed form of Vitamin E, NAC, ALC.  A healthy life style and glucose control could only enhance our lives.   On the other hand, I think Verapamil injection is a gamble, BUT, how a regimen such as the one I suggest will effect a specific case of Peyronies Disease is beyond any mortals' ability to say.  How a case of Peyronies Disease will progress without treatment is beyond anyone's ability to say.

The problem is not that you did not have a good question.  The problem is that no one has good answers.
(Maroon color highlight added by moderator)


j                          the time before
« Reply #632 10/17/08 at 02:41:59 PM

iceman said "one can only imaging life pre this forum ..."

I don't have to imagine it - I remember. And it was pretty creepy. There was a "forum" of sorts, an unmoderated madhouse that BSTC set up and abandoned.  It became a powerful magnet for idiots, jerks and dweebs with no lives, all desperately wanting to post nonsense containing the word "penis" and toss obscenities at each other.   Anyone coming across that forum quickly learned that not only did Peyronie's cause your dick to bend, it made you crazy too.  What a great public service.

I think BSTC eventually realized that the forum was not just an embarrassment but looked bad to investors, so they deleted most of it. But by then, they'd sold off the rights to injectable collagenase and no longer gave a fig.

Here we have a forum that preserves anonymity but has moderation and controlled logons. People with actual medical knowledge are starting to post here. Potentially effective treatments are discussed.  We even start tip-toeing around the edges of the psychological problems surrounding this condition, and sometimes talk about them realistically.  

So we no longer have to feel like we've fallen down 3 flights of stairs and are laying in a pool of stagnant water in life's sub-basement.  We can be like normal people - maybe even BE normal people.