Scar Growth/Change Over Time Beyond 12-18 mo.s?

[mercurza]

Alrighty,

I am 27 and have been living with Peyronie's for 31 months (yeah, when you have Peyronies Disease, you count.) - I've seen a urologist familiar with the condition, and have been trying to manage inflammation and taking all the oral supplements.

I had initial onset of a pea-sized lump which progressed into 2 lumps on either side. Then, for about a year I stabalized with minimal curvature and the two pea-sized lumps. Then, seemingly out of the blue about 10 months ago (but probably due to reinjury), my Peyronies Disease scars went nuts again. The 2 scars turned into 4 and increasingly and did not necessarily grow in size, but lengthened down both sides of the shaft. I now have a 20 degree bend down and to the left.

I have gotten over it mentally with the help from my wife, but almost 3 years into this thing, my scars are still growing, changing shape, expanding almost weekly.

There is not much talk on the forum about scars over the course of many years... has anyone had their scars continue to grow and change beyond that 12-18 month point? In what ways? What are some treatment methods that have been "successful"? How do you know if it is calcification?

Okay... hopefully this talk about the scar tissue can help someone, including myself.

Cheers,

Zach  

[George999]

The ONLY oral treatment that has a proven track record around here is Pentoxifylline.  It tends to shrink lumps and stop the formation of new scar tissue in its tracks, although it doesn't work equally well for everyone.  There is good research in this regard for CoQ10/Ubiquinol as well, but not much experience due to its newness.  All the other stuff commonly recommended for Peyronie's is ineffective and a waste of time.  - George

[newguy]

Perhaps men are extra suseptable to further injury during the inflammatory stages of the condition. Either that or that wwas simply part of the original process. Either way, it's certainly a time where treatment stratgies need to be at the forefront of your mind. George has offered good advice here, as usual. Pentoxifylline is known to be able to help with peyronie's in a great many cases. Being that the progression of your condition doesn't appear to have stopped, this is certainly a treatment approach you need to make a priority.

As for the time periods stated, I wouldn't say that it's common for a condition to steadily get worse beyond the 18 month period, but it certainly isn't unheard of. Sometimes there's a delicate balance. Hopefully pentox will tip it for you.  

[George999]

It seems like a lot of guys are asking "what comes next?" as the very first post on this forum.  The answer in every case is "who knows?".  EVERY case of Peyronie's is different.  That is why the first question you need to ask is "what is the treatment with the most potential to succeed?".  And the answer to that is fairly clear:  Pentoxifylline.  Of course there are equally good mechanical treatments and they would be the VEDs.  Pentoxifylline and VED can be used together if you get guidance from guys on this forum who have experience.  Once you have one or both of these attacks going on, then you can try adding some second tier stuff.  - George

[mercurza]

Thanks for the replies - I sense the theme is "get on pentox" - now I have to convince my urologist who is not a "believer".

I am just starting to lose it over these constant changes... right when I think "hey I can live with this" - my Peyronies Disease gets worse and changes AGAIN and I feel like I am back to the panicked day I noticed the first lump. Does this ever end!?!

[crashbandit]

There's good things that will happen in your life and then there are the bads things. Peyronies disease is one of those really bad things that hits you so hard, it just might knock you out. It just hurts on so many different levels.

Makes alot of those other problems seem like a walk in the park too eh. Like the old saying goes, it could always be worse... I know, sometimes it seems it can't get any worse. You think of the good old days, and how great it was.

From what I've been reading this last year on this, wonderful wealth of knowledge Peyronies Disease forum, is that, everyone's Peyronies Disease is different and depending on many factors will dictate how your Peyronies Disease story will play out. One of those important factors is finding the root of your Peyronies Disease and fighting it. There are many roots to this disease, and with the help of this forum and other sources, I wish yopu luck on uncovering that root and finding relief.

[LWillisjr]

Thanks for the replies - I sense the theme is "get on pentox" - now I have to convince my urologist who is not a "believer".

It isn't your job to convince him. Find a different urologist.

[charlie44]

My urologist who is a Peyronies expert says the acute phase can last 12-18 months, which is longer than the initial literature I read (12 mos). But obviously from some posters experience, it can go on and off for years and years. I am like another poster....if I knew it was done now, I could feel better. It is the unknown changes that are worrisome.  

[james1947]

My acute phase lasted 24 (maybe 26) months and is stable now for more than 12 months. I just hope that nothing more bad is coming. It's just hope.
I was feeling better if it was not "done" yet because the chance that treatment will help is bigger in the acute stage.
Charlie
I hope you are not giving up. You know is a long marathon.
James

[charlie44]

Not giving up! Thanks James.

[BentYoung]

What about all of you like George out there who have had this for decades? I personally have had this for 12 years and I'm only 26. I can tell you that after about year three, I have seen very little change in curve and scar. That's no BETTER and no worse, even with the late addition of all the drugs that we all have sampled in desperation (pentox for 3 years straight too). I am thankful for this stable period. I think it would be helpful to hear from the long timers with Peyronie's too to see about determining a long run cut off for noticeable changes. I know everyone is different and an injury can restart the process and there is always those who went the surgery route etc etc...

Its so hard to tell what a "safe time period" is for Peyronies Disease - in fact it may be impossible

[Old Man]

BentYoung:

I have had several bouts of Peyronies Disease over the past 58 plus years! Peyronies Disease just seems to have a mind of its own. One never knows when a flareup or return of even minor symptoms will occur.

At present, my case is an arrested stage, if one can call it arrested or stable. At least I have no curves/bends or plaques that can be felt on careful examination. My uro considers my case in the stable stage.

At times, a slight curve/bend comes back, but usually goes away very quickly. I still use the VED therapy on a "maintenance type" basis which is usually about 2 to 3 times weekly. This method seems to help me keep my desired dimensions (that lost from ED/Peyronies Disease and a prostatectomy in 1995). It also keeps the penile erectile tissue more healthy.

I consider myself one of the lucky ones to have several bouts of Peyronies Disease and been able to "control" their outcome. That is the reason that I firmly believe in the VED therapy for those that it works for, etc.

Old Man

[George999]

The bottom line is there is NO safe period.  Anyone who is predisposed to Peyronie's can enter the active phase with the slightest provocation.  All it takes is a trigger.  That includes guys who have never had Peyronie's AND guys who have Peyronie's and are "stable".  That is why I am determined to not only treat the disease as needed with stuff like Pentox and Ubiquinol, but also to do my best to attack the underlying cause which I see as serum glucose and serum insulin levels.  Long term, I see that as the only way to actually reverse this disease.  - George

[Pfree]

Hi, I'm not sure if this is the appropriate place to post this message, but here goes.

Has anyone experienced plaques so close to the base that they are right against the pubic bone when flaccid? It is surely disturbing as it causes the hourglass effect when erect. It seems a lot of reports describe plaques further from the base, and I was curious about this.

Thanks,

Pfree

[james1947]

One of my plaques, the first I had, is very close to the base in the left side, causing a dent and from this point the penis points to the left.

James

[Pfree]

Thanks for your response. It really makes a person wonder when some doctors suggest that a trauma occurred and a person can't think of any traumatic incidents and then develop a plaque where a trauma is highly unlikely.

[james1947]

To say the truth, nothing that a doctor will say will not make me wander.
Rarely you find a competent doctor, in any subject. It's my opinion based on my own experience and from reading this forum.

James

[Pfree]

I agree James. When I told my primary physician how rude and dismissive the first urologist was, he suggested that the urologist may have responded that way because he was frustrated. It seems there is more profit in other diseases, and he just didn't want bothered...in short "get out of my office".  I really think this is some sort of inflammatory disorder.

[pizzaman]

The bottom line is there is NO safe period.  Anyone who is predisposed to Peyronie's can enter the active phase with the slightest provocation.  All it takes is a trigger.  That includes guys who have never had Peyronie's AND guys who have Peyronie's and are "stable".  That is why I am determined to not only treat the disease as needed with stuff like Pentox and Ubiquinol, but also to do my best to attack the underlying cause which I see as serum glucose and serum insulin levels.  Long term, I see that as the only way to actually reverse this disease.  - George

I believe you may be right. I started eating a strictly primal (caveman style - no sugars, grains, PUFAs, or processes foods). Within 2 days my pain has almost disappeared, which has boggled my mind. I was in the midst of a nasty flareup caused by increasing sexual activity. It actually worried me that the pain disappeared so suddenly. Also, it still seems to be pretty inflamed.

As an aside, I thought my Peyronies was virtually cured. My inflammation had almost disappeared and the pain went away, but everything came back with a vengeance after a night of too-vigorous sexual activity.

As I mentioned in my introductory post long ago, I was diagnosed with low T, which I've been successfully treating. I've also shown a fasting blood glucose of 99 recently, which is borderline diabetic by some accounts. There is an inverse correlation between testosterone and blood glucose. There is also an association between Peyronie's and low T. So, I'm thinking it could even be high blood sugar that underlies the Low T - Peyronies correlation.