Progression of Peyronie's Disease

Previous topic - Next topic

0 Members and 2 Guests are viewing this topic.

GS

YMENOW,

I am in my 15th week and all I can really tell you is that in my opinion, it is a slow process and you just do it on a regular basis, don't over pump and don't get in a hurry.  For me, my results seem to vary from week to week and even day to day as far as the amount of stretch I feel and even how engorged with blood my penis gets.

Don't expect any quick results from the VED and you won't be disappointed.  I'm sure Old Man will agree; you have to be in it for the long haul and you have to be patient.  It took me about 10 weeks to just get comfortable with whole thing and I'm not really expecting to be healed in 26 weeks.  If I am, I'll be thrilled to death, but if I'm healed in 52 weeks, I'll still be thrilled.

The way I'm looking at it is...at least I'm doing something that has a good chance if helping me and if I don't over pump the VED, I'm not going to hurt myself.

I hope I don't sound pessimistic; I just think it's going to take a long time and no one said it was going to be easy.

GS

YMENOW

Thanks so much for your support GS and others.

I took my 3 cyl VED device which I thought would be questioned at the airport and it wasn't on my recent trip.  After reading some posts here, I figured what the hell. I had no problem at through security.

However I wasn't able to use it everyday, and I felt bad about it since it has been helping me a lot. I wanted to go home and get back to my routine without letting up on my therapy.  So I guess I am really into getting some improvement.  I know thus far I am!!!   Before my start with the protocol, I felt I lost my manhood and was disappointing my wife, but now I feel good.  I am in the B cyl and doing well except for this sidetrip and I don't know if I have to start with week one again.  I think I can "catch up" and resume the 26 protocol?

I am still hoping for the best and as you, I am worried about negative affects of the therapy if I "over pump".  I can't believe that I am doing this in the "twilight of my years" and I totally have empathy for those who have to cope with this in their younger years.  It is terrible for anyone to have to go thru this.  I am also fortunate that I can talk to someone who has the same fears and hopes that I do.  I feel a great deal of support from everyone here.  

My wife is supportive of what I am doing which has helped me tremendously.  

ymn




newguy

Glad to hear that the VED is working out well for you, ymn. Please do continue to keep us in the loop!!

joos



I am still in a big concerne about my penis behaviour and I will soon visit another urologist.Even though George merely convinced me that I dont have Peyronies Disease , I encounter one element that could easily change your opinions.Well its hard to tell am i just paranoic or what but It seems to me that I have some sort of vein/cord like thing that I am not sure I ever saw there or I simply did not care.Just on the half of my penis I noticed something raised on the right side but I was convinced that it was just vein .NOw thing is that it is just a couple of milimeters down of area where I reported narrowing (hourglass effect) ,however I am not sure that it is suposed to be there.It is basicly vein like ,1 cm long or more ,horisontaly positioned identicaly like vein in root of my penis, just this one is harder to be indentified as vein.What I wanna ask Is there a way you could describe this plaque/lump/bump or are there any pictures of this things,not erections but this lumps and does this sound to you as lump?It is not painfull ,at erections it raises a little,just not sure could this be plaque or not.I still have weird erections ,problems at getting one,things start at root of penis but in middle stays thin but when I achive full erection I have no curvature whatsoever and no pain.My problem remains hourglass looking penis when flaccid(never looked like this) and during process of getting erected.Is pain thing must for peyronie ? Is it possible if that is what I describe lump that it could cause effect even on side where there is no lump? Doctors suck in Croatia, so people help.


thanks in advance :-\

Skjaldborg

Joos,

Pain is not always associated with Peyronie's: some men feel pain and others don't.

Peyronie's lumps can be different in different men. Some men have long rope or cord-like areas of scar tissue while other men have lumps. Sometimes the lumps are too small to be felt by someone who is not a doctor. When I had an ultrasound, the doctor said that I have a thin sheet of scar tissue where I have the hourglass shape. Thin scar tissue can still stretch, so that is probably why I have hourglassing but I don't have much curvature. The scar tissue of Peyronie's can take many forms and an ultrasound is probably the best way to see what kind you have.

If you do not have pain, curvature or erectile dysfunction I would suggest you try not obsessing about it. If you do have erectile dysfunction, mention that to the urologist and get treatment for that. It's possible that you don't have Peyronie's disease, which would be great! It's also possible that you do have it, but only a mild form. Best of luck.

-Skjaldborg  

joos

Thanks for your prompt answer


See,thing thats been killing me is the fact that I dont know did I accidentally cause this to myself.I had issue with balanitis for long time and decided to leave canesten cream and try with some mild neutral cream.I was told to use Bepanthen(panthenol) cream but I was mistakenly given with panthenol ointment(BABY) even though I heard that was also given for treatment of penis skin.I used that ointment for only one night and felt mild discomfort and next morning washed my penis.Thing is that after that for the first time  I felt and saw problems regrading ED and weird shape.Now do you realy think that some baby ointment used for nappy rash even thought not ment for penises could cause some significant damage to my penis in one night!!!I hardly belive that but that is the fact thus possibly just weird case of circumstances.Is it possible that even after some "trauma" Peyronies Disease could instantly develop over two or three days?Or it takes some time and process?I know you all think ,why the hell you just dont go to your urologist,and I was there one month ago and he just smiled and didnt even look down there.I have hzistory of really bad episodes of bacterical prostatitis and urologists didnt help me almost nothing.Currently using TwinLab E200 and Quercetin +C,plus selen and zinc.

Thanks once more

newguy

joos - For peace of mind maybe seeing another urologist isn't a bad idea. If you can see one with good knowledge of peyronie's disease, then hopefully that provide the clarification that you are seeking.

Zorro

Hi,

I'm new to this board so I'm not sure what to do here.  About 1.5 years ago I mysteriously can up with a painfully bent erection.  Saw a urologist and he was pretty stunned as the curve is 90 degrees +.  I've taken vitamin E and some other med but nothing has changed with this curve.  In the last 8 weeks, not only do I have this nasty curve, but I also have an hour glass shape!  I have no problems getting an erection or having an orgasm ... but having sex with this curve is a nightmare and embarrassing.  I have a Dr appointment next week ... haven't seen him for 9 months.  I've read about ultra sounds and VED Therapy and I think I may bring this up when I see him.

Any advice from you guys on what I should ask the Dr?

::)

newguy

Zorro - It's positive that you are still able to gain erections.  I advise you to print off the pentoxifylline evidence and take that to your urologist:


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

https://www.peyroniesforum.net/index.php/topic,1004.0.html

It has been shown to be effective in some men for helping with peyronie's disease. In combination with a VED you at least will be actively involved in a daily proactive routine designed to help with your condition. That the urologist was so stunned at seeing a bent penis doesn't bode well for his abilities at dealing with peyronie's patients. Hopefully, if you're seeing the same guy, the studies you print off and show him will be enough to convince him to prescribe pentox to you.

Here's a recent VED study too, from the resource library:  https://www.peyroniesforum.net/index.php?action=dlattach;topic=1218.0;attach=371



LWillisjr

Quote from: Zorro on July 14, 2010, 12:05:14 PM

Any advice from you guys on what I should ask the Dr?

::)

1. You need to ask about his/her treatment of Peyronies Disease and if this is his/her specialty area.
2. Don't settle for just a visual examination and a "I think you have Peyronies Disease, there is nothing you can do but wait and see".   >:(
3. You can bring up the VED and other methods but be prepared to be told "those don't work".
4. At best see he/she will write you a script for Pentox.
5. Be prepared to find another urologist who specializes in Peyronies Disease and/or sexual health.

But just my opinion.   ;)
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

YoungOne

Hey all, it has been some time since i visited the forum.  For those not familiar with my situation, I had an injury during sex due to an overzealous woman slamming her weight into me while i was not fully hard and bending the tip of my penis up.  Scar tissue immediately formed.

It has been 15 months.  The pain has all but gone away.  My erections looks normal, other than exxagerating the upward and to the left bend that i had before.  I have gotten over what happened but something that still causes me huge amounts of anxiety is just the scar tissue in my flaccid penis and sometimes not being able to fully void all urine causing dripping after.  Every time i go to the restroom I am reminded of it.

Question.  Does this injury related scar tissue take over your penis over time? I am 25. Is this scar tissue (top third of penis hard and seems like top 2/3rds when flaccid) going to change any? It has been 15months since injury.  The fact that my scar tissue is caused from injury and not spontaneous peyronies....does anyone know if it is now "stable"  Thanks in advance.

zariche

From what I understand from my time reading around here and other places is that there is a stabilizing stage for most at around 12-15 months as to which it stops progressing.  Although for most there seems to be a stabilizing state there may be some that extend past the 12-15 months of which the inflammation continues.  After getting P.D. it is also possible for flareups to happen at anytime since you have been proven to be susceptible to the condition, although since yours is injury related it may be less likely for it to pop up randomly, but I could be wrong.  But no from my understanding once it is stable the scar will not expand to encompass the entire shaft unless it is reinjuried, but with the possible side effects of less rigid erection you may have to be more careful than before.  Are you taking anything like ALC, Pentox or anything that may help with the pain?

I'm also pretty young being only 22 and have the same issue with the 1/2 towards the head being harder when flaccid, although I don't have a curve (maybe 1-5 degrees to the right due to indentations) it has been causing a bottle neck and also my shaft now looks like this | ( with an indent on the right including a lot of smaller ones with nodules.  

newguy

YoungOne - If your condition appears to be stable and isn't painful this is a good sign. It's hard to give definitive answers with peyronie's, but some well known urologists operate on individuals after the condition has been stable for a year. By that logic, we can assume that they tend to believe that it commonly does not change after that time. From being around here, I would say that there are quite a few exceptions to that rule, though it's entirely possible that more people with worse or prolonged cases of peyronie's find their way here, compared with those with more textbook cases.

Brightdog

Quote from: YoungOne on August 11, 2010, 07:42:36 PM
Question.  Does this injury related scar tissue take over your penis over time? I am 25. Is this scar tissue (top third of penis hard and seems like top 2/3rds when flaccid) going to change any? It has been 15months since injury.  The fact that my scar tissue is caused from injury and not spontaneous peyronies....does anyone know if it is now "stable"  Thanks in advance.

My experience was a long period of stability from 1999 to about 2005, but then it changed - possibly owing to a re-injury. It stabilized again in early 2007, and after it had been stable for some time I got the injections (2008). That destabilized everything, and then I had to wait for the surgery, which I just had last month.

Mine was an extreme case - although the original injury was pretty much exactly what you went through. I recommend developing a healthy sense of humour and a huge amount of patience - do what you can to deal with it and keep reminding yourself that a man is more than the sum of his parts.

newguy

Quote from: Brightdog on August 12, 2010, 02:20:42 PM
My experience was a long period of stability from 1999 to about 2005, but then it changed - possibly owing to a re-injury. It stabilized again in early 2007, and after it had been stable for some time I got the injections (2008). That destabilized everything, and then I had to wait for the surgery, which I just had last month.


I guess either:
1) The condition is ever present once activated, and can randomly flare up even years after the original injury/occurence
2) It effectively heals, but due to either the shape of the penis, nature of the scarring or a susceptibility to the condition further bouts are much more likely to occur than in the general population

I would tend to go with your thought (2). It begs the question of what a previous sufferer of peyronie's should to reduce changes of re-occurence. They could minimise certain sex acts perhpas, or use the VED a few times a week to help limit any potential problems down the line. I wonder if very long term pentox use could also be an option. I'm not sure what the health effects of such long term use would be. Of course, it the condition reaches the point of being 90 degrees +, surgical options are probably the main chance of a successful resolution.

alsofilm

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.

snowydreams

What causes the loss of length, girth, and width in men with Peyronie's?  Is it just the plaque or the awkward angulation and curvature or a combination of both?

newguy

Quote from: snowydreams on December 13, 2010, 02:57:08 PM
What causes the loss of length, girth, and width in men with Peyronie's?  Is it just the plaque or the awkward angulation and curvature or a combination of both?

I would say that it's a result of the plaque restricting the penis in various different ways.  

fubar

Snowydreams

Think of your tunica like plastic wrap.  Once damaged it is stuck in that shape and then the wound heals
With a plaque covering the sore.Then when you have an erection the shape of the erection is determined by the way it has healed.You know when you pull apart plastic wrap it is never the shape it once was.

That is why we use ved , traction,  cialis and other oral suppliments to try to break down or pull apart the scar.So when you get Peyronie's the shape,  width and girth is determined by the damaged area.This is why  all our issues are different from one another.

Hope this helps you understand what is going on with you and us.

Fubar

DO

There is a site called  urosciences.com that sells a device to measure the degree of Peyronies
it is called Peyronies Disease Assessment Device.... Look to see if you have any interest in using this tool!
My doctor gave me mine. I am ok with using it  but not every week maybe every month!  

Noway

@do

You can have peyronies disease as they call it without a curvature. Sometimes my penis curves and sometimes its as straight as an arrow but I have erection problems too. What im getting at my erections are never the same and I wouldn't base your peyronies disease on a tool sorry folks. Measurements of your peyronies varies and your either getting better or getting worse you can just tell on your own. Give me another percentage.  

DO

Noway,
Mine was curved downward... at 55%, The tool was given to me to see my own progress over period of Injections. To measure the progress was useful in my own head and allowed me to see some light in the situation! My errections were painful. If there was no progress then it was going to be a implant surgery! I was lucky the pain disappeard and the curve slowly decreased and begain to turn around. Over the long haul yes the difference is visual. It was only a suggestion.... Good luck with yours.  

Fix This

Quote from: johndoe on June 29, 2007, 10:55:48 PM
Just to clarify I was using Collagenase but I ran out and didn't want to go back and get another prescription for it. It's also too expensive to  keep as part of my regime which is actually the reason why I desperately sought other means i.e. EMS. I figured the machine only cost about 50 bucks and it last pretty much forever, just have to replace the batteries every once in a while. Vitamin E I can get at the store anytime for about 7 Bucks.

Note: Obviously I stressed the point that I'm in no way advocating anyone else to try this I think we all got that point, I also want to stress the fact that what might work for one person may not for another. I don't believe that there is one type of Peyronies Disease. I believe each of us have individualized cases and finding a "cure" is going to come down to trial and error anyway.

LAST UPDATE (Good News Bad News): I noticed that immediately after use of the EMS my penis in the flaccid state "hangs" pretty much straight as an arrow and my erections are "straighter" and stronger immediately after use (The Good News), unfortunately (and I'm not worrying about it yet) after about an hour or so my penis tends to return back to having a slight bend in the flaccid state and my erections are less straighter and not as strong. Like I said before, time can only tell if I've stumbled upon something. I saw a significant difference in the first 6 months of use and seemed to have plateaued a bit lately. I feel like the one year mark would be a fair indication point to see how the therapy has worked out. I'll post again when that time comes, I wish all the members here who suffer from this horrific disease the best, and sincerely hope that a "cure" is found soon so we men can go out into the world more confident and comfortable with ourselves.

JD over and out

Johndoe - How are you doing? Are you still on here ? I can see this was all from 7 years ago but wondered how you got along with the EMS treatment after a year or so?

I have an EMS/ TENS machine at home also  
47 , penis trauma July 2018 leading to Peyronies. 30-40 degree dorsal curvature, narrowing after plaque. 

I'm attacking it though, and I will fix this!

VED, traction, DMSO, Ultrasound, Acupuncture, meds, herbs