PEYRONIE’S Progression & timing

[Old Man]

Youngone:

Please delete some of your private messages. Your inbox is showing full and refuses to accept the ones I try to send to you. I can not give you the information you requested until you have your inbox down where it will be open, etc.

Old Man.

[Brightdog]

YoungOne - while there are people who have had longterm Peyronies Disease with relative stability, their story might not be your story. I was fairly stable for the first few years after diagnosis, then things changed.

The important thing is that you need to deal with whatever the Peyronies Disease is presenting for you - do what you can as prevention or to slow things down, but you can't know from another person's experience what your particular situation will hold. From what I read on the forums, being proactive is a good thing. It looks like it might be easier to stop Peyronies Disease from progressing than it is to correct it once it has progressed.

Take heart. Many of the men in here have found solutions that worked for them at various points. You have access to lots of information and support in here.

[mercurza]

Hi all,

I am 27 years old, and was clinically diagnosed with Peyronie's 5 months ago. It all first began a little over two years ago when I noticed a small pea-sized bump in the middle of the shaft on the top. There was no bend, no pain, and no issues. About 6 months after that initial bump, it seemed that initial bump had gone away and two other lumps formed (one on the right and one on the left side of the penis). I dismissed them because they did not hurt, or weren't growing, and didn't impact erections. That was until this past summer (about 1 and a half years into this process) where I noticed the lumps getting bigger and harder, and then eventually formed a slight curvature to the left, with an indentation at the right.

I am blessed to have a great wife who I can talk openly about this, but I am so worried about penile cancer because the lumps seem to keep growing. My physician looked me in the eye after a manual exam and said "you don't have cancer" but I keep reading on the internet about how certain cancers present similarly. Hence why I am very nervous because after just over two years from the initial noticing of the first lump, I feel like they are still growing.

It is normal for scar to grow even after the reported "18 month" period? Does anybody have scars that have increased in size beyond this period?

They often seem worse because I do self-examinations every day.

Any insights would be helpful as this is really messing with my mind!

Thanks.  

[Skjaldborg]

Mercuza,

Go to a urologist and get a definitive diagnosis. Hand wringing and internet searches are not going to make you feel any better. My guess is that the uro visit will go something like this: "Unfortunately, you have Peyronie's. Congratulations, you don't have cancer."

Ask to get on Pentox, which in some cases has shrunk plaques.

Best,

Skjald

[George999]

I agree with Skjald on this.  99.9999% this sounds like Peyronie's to me.  Peyronie's is rare, but penile cancer presenting this way is so rare that it makes Peyronie's seem ubiquitous.  So get a referral to a urologist for a second opinion and don't worry about it for now.  The best idea would be to post on the urologists and other doctors topic and in the post let us know where you are located.  Then perhaps someone here can point you to a Peyronie's specialist in your general area who prescribes Pentox and you can not only get a firm diagnosis, but also a script for Pentox and start shrinking the things rather than growing them.  CoQ10/Ubiquinol is also helpful as is VED treatment and several other approaches all documented here on this amazing website.  - George

[mercurza]

Thanks so much for the encouraging words. I am going to take your advice and post to see if anyone has any recommendations of urologists in my area.

This disease just really messes with my mind, and I go through a good couple of weeks, then a bad couple of weeks. It just compounds any "normal" stress already going in my life. It took me a year and a half to even bring it up to my doctor so I guess I need to start being more proactive rather than playing out every possible scenario in my head.

I am really glad I found this site, I appreciate your responses and help.  

[newguy]

Hang on in there mercurza. When you start on treatments like those mentioned below, you will at least be in the knowledge that you're doing all you can to help yourself!

[Woodman]

I am coming up on my four year mark with having Peyronies. I developed it in July 2007. I first noticed the shrinkage effect taking place in March of 2009 right after my 8th set of VI injections. The shrinkage started with length first 1/4 to 1/2 inch over a few weeks. Then after a little time I noticed girth changing too. The girth has been shrinking on the average of every four to six months. I ve just noticed a considerable difference about 6 days ago.

My bends and curves have pretty much stayed at the same angles. I was wondering if any of you guys have had this experience or something like it dealing with shrinkage with the condition long term. It seems like in my case it never stops. My penis is just slowly shrinking into a fraction of its original self. They define stable as the condition gets no worse and stays the same. My curves and bends are the same but whats left is progressively shrinking. So I don't really know for sure if that's true stability. I do know that scar tissue shrinks but how long is mostly normal. I know theres no normals or straight ansewers with Peyronies Disease but this is been going on for four years my condition has never stayed the same and not gotten slowly slowly worse.

Also something that might tie into it. I had long term pain from this condition for the whole time I ve had it. I ve tryed many things to try to deal with the pain right now I am taking Celebrex with the rest of my supplements to try and help with the pain and or inflammation.



 

[jackp]

Woodman

My peyronies started in 1995 and by the time I had my implant in 2008 I had lost 1.5 inches in length and a lot of girth also.

In my case most of the shrinkage was within the first 2 years. Then as the ED progressed I lost even more.

The best thing I know to help stop the shrinkage and help restore some of the loss is the daily VED exercise.  It takes time to show progress but it did help me regains back some of the loss.

Jackp
http://jackp-penileimplant.blogspot.com/

[newguy]

It's a real shame that you had a negative mental reaction to pentox. I wonder if that would've made a difference. I think quite a few others have been in a similiar situation to you regarding your condition. The idea that everyone enters there clear cut stages of worsening, then stabalisation doesn't appear to ring true. Well, rather for many/most it probably does, but there are certainly many cases that fall outside of that model.

[George999]

I know that I was in the continual deterioration mode over a period of years.  I was only able to turn it around with Pentox.  ALC was fairly good at stopping it, but only Pentox was able to slightly reverse it.  All that got even better with the addition of Ubiquinol and now I am in a mode of continual improvement rather than continual deterioration in length and girth, mainly girth.  The only other treatment that seems to address this issue would be the VED.  It seems like a lot of guys around here have maintained size with the VED.  - George

[MikeSmith0]

George how much pentox do you take? if i take 400 3 times a day it really screws up my sleep, regardless of when i take it or how much food i eat.   i cant manage to take 2 a day but that's not a great situation either.  

how long did you notice it took till your size came back?   are you doing the ved too?  i have had a lot of size loss...in just the last year alone it has been horrible.  

it is a shame nobody will inject superoxide dismutase because that has proven helpful in a lot of fibrosis research. i dont understand why that product is just not available... a compounding pharmacist can make it into a cream, but injections would be better.. and it's local.. no side effects... and actually works (unlike verapamil).  I think a compounding pharmacist could make an injection too - but he needs an order from the doctor for specific units / grams / ml etc... there is CLEAR literature on this but the urologists seem clueless and /or completely unwilling to try it.  

[George999]

Mike,  I take 400mg 3X per day with meals.  I try to never take the last dose of the day after 6 PM.  Size issues began to gradually resolve after starting Pentoxifylline only to regress when I temporarily stopped taking it.  Once I added Ubiquinol 3X 100mg per day with meals, resolution in size issues accelerated.  Sleep and digestive system problems resolved with Low Dose Naltrexone.  Vitamin D has also helped me greatly with general health issues like this.

I hadn't heard about SOD, but I think it is an interesting concept.  It is so hard to find physicians willing to try stuff even though the stuff to be tried is totally safe and potentially effective.  At this point I am fortunate to have such a physician and that has been a great help to me.

- George

(I am not using VED)

[fubar]

Mike

I to have gone a time without pentox and noticed shrinkage.When I started back it took a  while 3x400 mgs a day and 3x 100 mgs   with ubiquinol and things are looking more relaxed , length and girth much better.It has made a big difference know, no more tight looking penis.My cocktail also includes cialis I think all three help to give the penis a more natural look. A long with the use of the ved that I need to get back to doing everyday.

Fubar

[chefcasey]

I also had the same sleeping side effects with pentox when I first started.  After the first month though, any side effects gradually wore off, and now I can take it at 8pm and still fall asleep by midnight.  It just takes time for your body to get used to it.  I also used to exercise in the morning, and now I do it at night which helps me sleep a lot better.  A good side effect is that it has really helped me with my weightlifting.  Pentox was originally designed to get better bloodflow to the lower extremities, and I've noticed much less fatigue when I squat and leg press.

Why is it that when someone goes off of pentox, they see a reversal in their improvement?  If that's the case I don't think it's a problem if you take it for a long time.  From what I've read, you can take it virtually indefinitely without problems, the problem is just finding a doc to prescribe it that long.  Even if someone is lucky enough to have an up to date doctor who prescribes it, I don't know if they'll prescribe it forever.

[Woodman]

I am currently taking Co Q-10 100mg 3 x day, ALC 500mg 3 x day, L-Arginine 500mg in the morning and evening and 1000mg at lunch. I was taking 1000mg 3 x day but had to cut back because when I was just sitting I could feel my heart beating in my chest. Also taking Celebrex 200mg 1 x day. Sometimes I have to skip a does or two when my stomachs acting up.

I ve tryed taking Pentox starting in 2008 three separate occasions and had side effects as Newguy mentioned. I am trying to get up enough courage to try one more time maybe 2 pills a day in the morning and evening but Iam afraid of its effects. I am under a lot of stress with family and only working part time etc. The only things I can come up that mite be different is I now have experience with its effects on me and maybe just taking two pills a day spread out could help with less dosing over a longer period of time.

I ve tryed the VED numerous times and as of date I just can't get it to work out. My last attempt I really thought it was gonna work out for the long run once I added in the Co Q-10. I don't know if its just my particular case and/or because I just have had long term pain since day one with the condition that I constantly struggle with till today. Its so perplexing to me I wished I knew if it was just my particular case or I am just doing something wrong. I even bought the Fastsize traction device after talking to Dr. Levine thinking maybe using traction VS vacuum might make a difference. Shortly after starting the traction I hurt one of my plaques. It hurt pretty bad for a while then it let up after taking Celebrex for about a month. Its been a year and I still have pain from that spot before the traction I didn't have much of a pain problem from that plaque at all. I know it sounds like I am all thumbs......but ironically enough I make a living doing mechanical carpentry repairs etc.

I understand the basics about the scar tissue maturing then it contracts leading to shrinkage but can someone explain to me why it continually keeps shrinking and shrinking over a very long period of time? It just seems you would have X amount of scar tissue and according to X amounts size and density it would only shrink so much then hit a stopping point. I know that Peyronies and logic really don't mix so hopefully you guys can explain it to me.

George999 if you do not mind me asking why don't you use the VED? Whats your thoughts and/or opinions about it?

Thanks everyone for all your input. If my post comes across a little grindy I apologize I think this roller coaster they call Peyronie's is really starting to weigh heavy on me once again.

[George999]

Regarding the VED.  I certainly have nothing against VED use and haven't ruled it out in the future.  At this point I am doing so well without it that I really don't see the need for it in my case.  Certainly I consider the VED one of the top two treatments around here in terms of effectiveness.  But everyone has to do what works for them and Pentox alone supported by Ubiquinol is really doing the job for me.  - George

[yojim]

Reading about this disease I am getting mixed messages.  

I hear that many urologists will suggest a wait and see attitude.  Implying that whatever course this diseasse takes, it takes, nothing can be done to mitigate it.  Once stabilzed, evaluate the level of hardship (no pun intended), then deal with it then.  

I also hear (or summize when reading between the lines) that the final result that this course takes as it progresses can be mitigated, implying that the final negative results can be minimized.

If the later is true then it would seem the fromer is almost criminal.  At the very least horribly negligent.

It seems the odds are that the former scenario is much more common, which implies I am almost certain to face it.  I intent to bring this up next week at my (way over due) yearly physical.  I am not even seeing my PC, I am seeing a nurse practitioner. Believe it or not the earliest appointment I could get to get a physical with my PC is 9 months down the road.  Howz that for nuts? And I (supposedly) have top of the line health insurance.

Sorry for being long winded here.  This all boils down to a question.  Are there any statistics on how often this disease progresses beyond it's intial onset?  

My situation is, a period (a month perhaps) of pain (only when 100% erect), which boild down to only a few occasions, followed by a seeming instantaneous bend (upward).  At this point in time the bend will not interfere with normal relations.  

Should I expect this to get worse?

What are the odds it has already stabilized?  

How many men have an initial onset of this disease, go through a period of being depressed over it, then just move on with it never getting any
worse or any better?

And, how do we know with a reasonable degree of certainty, we are stabilized?

I'm wondering if there have been many men who had an onset of this disease, never reseached it, never mentioned it to thier doctor, and simply moved on with life with a "bent" erection not thinking much about it (assuming the bend was say 30 degrees or less (or whatever is managable).

[George999]

There are no simple answers to the question of "what happens from here" because there are no real statistics and it would be nearly impossible to compile them since a lot of guys probably never speak up about it.  Thus there are a lot of unknowns.  Doctors will insist that "most of the time" patients "recover on their own", but they have no real statistics to back that statement up.  Its just sort of a religious belief with doctors.  Around here most of us believe that patients almost never get better spontaneously, but that is only because we rarely see it happen with those posting here.  But it could be that those who get better just stop posting and go away quietly.  Who knows?

The reality is that there are effective treatments for Peyronie's Disease.  The reason you never hear of them from a primary practitioner is that most docs treat with drugs promoted by the pharmaceutical industry.  At this point the pharmaceutical industry has not been able to come up with a treatment that is effective and makes them lots of money.  And if big pharma is not *promoting* a treatment and hasn't spent millions of dollars getting a treatment FDA approved, you *won't* hear about it from your doctor.  So the *only* way you get access to effective Peyronie's treatments is from doctors actively involved in non-pharma sponsored research.  Typically, in the case of Peyronie's, that would be Sexual Medicine or Peyronie's specialists at large medical centers.  The treatments in question, however, are so effective that a growing number of urologists across the country are learning about them and prescribing them for their patients.

The same is true of the VED.  At this point there is simply not enough money in the VED market to justify manufacturers spending a lot of time getting their devices approved for Peyronie's, although I believe in the case of the VED, at least one manufacturer has.  But they are not promoted by the medical device industry for Peyronie's, thus front line doctors don't prescribe their use.

As to what is and is not offered to Peyronie's patients, just like everything else in medicine, its more about money than it is about the patient's welfare.  That is the bottom line and that is why the patient has to be proactive with everything medical in order to get quality care.

[KAC]

This may be unwelcome news, but it's my experience:  I've had Peyronies Disease since May of '10.  I've been taking most of the therapies recommended (or partially so) on this site--ALC, L-Arginine, Vit E, Ubiquinol, pentox.  I even take 12 G of Paba a day (over the counter supplement since the potaba was so expensive).  I've taken enzymes like Bromelaine.  I use Advil for headaches.  I use a VED.  I had 1 round (6 treatments ) the verapamil shots.  I've taken SAM-e partly for mental health, partly wondering if it would help the Peyronies Disease.  Basically the disease has progressed fairly steadily. I seem to go through 1-2 month cycles of having pain and inflammation followed by growth of the plaques, then periods of less pain. I still can't figure out a pattern to any of it.  Even my doctor said that the plaque growth in my case was faster than most, so maybe I'm more of outside the norm. It has been a terribly stressful year, so maybe that's a factor. I wish it were as easy to just stop being stressed as it is to take all these pills.  The plaque growth seemed the slowest during the verapamil shots, but who knows if they hurt or helped. I hated getting them, but I'm tempted to try again to see.  (Also I was disqualified for the Xiaflex study because I'd been on the pentox and other medications.)

FYI--I still have an active sex life, but it's had to change.  I've had no ED.  The curvature has stayed fairly steady at about 80 degrees for 5-6 months, even though the plaques seem to keep growing. I'm not sure why.

So I can see why some doctors take a leave it alone approach--maybe there are enough people like me. But I think they lack a fundamental human understanding that it's bad for the mind to just do nothing.  Trying something is part of maintaining mental health.  But I can see why it would be questionable to encourage therapies you don't believe will make a difference.  That was the agreement I came to with my doctor--he would prescribe things like pentox, but mainly I was doing these things for myself.  So I say try.  Be at least a bit scientific about it. And if something works let us know.  

[George999]

KAC,  All of the proven oral treatments for Peyronie's are anti-inflammatories because Peyronie's is an inflammatory syndrome.  Whether they work or not has a lot to do with whether the inflammation in one's body is great enough to overpower them.  For most guys here, they DO work to varying degrees, but they don't always work.  For a doctor to say that I am not going to treat this disease because it may not respond to treatment is just wrong.  Its like telling someone with an acute infection that they are not going to get an antibiotic because the infection might be resistant.  What kind of logic it that?  I don't think your case is typical at all.  Something is causing inflammation to be so aggressive in your case that nothing seems able to stop it.  But that is not untypical in the larger sense.  There are many diseases around where not all patients treated recover.  That doesn't mean we declare the meds ineffective, it just means that we recognize that even the best medicine doesn't always work in every case.  - George

[KAC]

George,
Hey, I'm not disagreeing with you--though if what you're saying is true, it suggests that I would be way worse off if I weren't doing anything.  I just don't have genuine evidence either way.  I may never know.  I had several doctors--including a good friend--give me the "don't do anything" line first.  I had to seek out a uro to prescribe pentox.  Supposedly, I'm his only patient using it.  I'm trying to balance hope and experience the best I can--and the best way I know to do that is to try whatever I have the energy, time, and money to try, but also state my experience as objectively as I know how.  This thing may turn around yet.  If someone else offers a plausible suggestion, I'll probably try it.  But my own experience at least helps me realize why some doctors say to do nothing--they probably feel like it's an ethical position to not endorse therapies that they believe don't have enough science behind them.  I've had my share of anger at doctors.  But I also worry some about taking all these pills--I have a number of doctors in my own family and I haven't told them I'm taking them because I know they might really question whether I'm damaging my health.  I try to buy high quality supplements--but who is monitoring what they put in there?  (The PABA especially I wonder about--it's made by Country Life--a time release... why don't other companies make it? who holds them accountable when they essentially have a monopoly?)  I now see a naturopath/md as well;  he at least is pro-supplement and approaches medicine as a partnership.  Still his main advice was to take 3000 iu's of Vitamin E per day.  Clearly people on this forum question that advice. I looked up studies that suggested 3000 was dangerous.

But don't give me a hard time.  We're all in this together and doing our best.  I take ubiquinol 3x a day because of your advice--and I plan to continue.  I'm reluctant to go off the pentox even for a couple weeks to see if there's a difference.  Still, I need to maintain my honesty about my experience whether it is typical or not.  How else do any of us know what it typical?

[George999]

KAC,  What is really important when taking that much Vitamin E is to take some Vitamin K2 as well.  One of the worst side effects of lots of Vitamin E is that it depletes Vitamin K.  Good you have someone (especially an MD) with some Naturopathic expertise as well.  - George

[charlie44]

I was just diagnosed with Peyronies two days ago. I had some pain for two months, so I guess I have been in the acute phase for that long.

Right now, there is not any real visual evidence of Peyronies, either flaccid or with an erection. But you can feel (not see) two small bumps on either side of the penis near the base if you push and know where to. I am seeing a Peyronies specialist in a couple weeks, so I feel good about my doctor options.

My question to those on the board and I know it's probably a big hypothetical, but I know people on here have a lot more experience in dealing with this than I do.....how much worse can it get from a visual/curvature perspective?

Does what I see now two months into the disease have any bearing on what I should expect to see worsen (or not) as the acute phase continues?

I can live with the pain and limitations physically, but being 43.....I am just dreading the worsening of this illness in terms of physical appearance and penis shape. I am trying to stay positive, but this news has been really tough.

Any insight based on knowledge and experience is greatly appreciated!....Thanks.

[Skjaldborg]

charlie44,

I got this at age 29 (now 32) and I have a mild case. After a very minor injury during sex I had some pain along with some hourglassing deformity. The pain went away while using pentoxyfylline and since stopping pentox over a year ago I have not had any further progression. In fact, the hourglass deformity has lessened somewhat and some of the erect length I lost has come back. Appearance-wise I am not the same as I was before however, because I still have some minor curvature and loss of girth. It's not a big deal though because my erectile functioning is just as good as it was in my early twenties and I am in very good health otherwise. Peyronie's is like a sports injury, every once in a while I remember I have it and take care in not making it worse.

As far as progression goes, getting on pentox and taking good care of your overall health are the best things you can do. It's hard to predict what this disease will do and every case is different. I do want to emphasize though that this is not the end of the world. Even if it does get worse, there are treatments you can try and surgeries available in worst-case scenarios. There are some very experienced and knowledgeable people on this forum who can help answer any questions you might have. Feel free to PM me if you have any specific questions.

Best of luck,

Skjald

[charlie44]

Skaldborg,

Thanks very much for your post. It was very helpful. I live in a metro area of over 1 million people, so we have some good urologists. I went to a highly rated one and he told me "take vitamin E and come back in 6 months". I did some checking and there is a Urologist who specializes in Peyronies nearby, and I am going to see him in 2-3 weeks. As you mentioned, I am going to ask about Pentox.

I am in my early 40's and in good shape and take care of myself. I can deal with the pain and everything as it is now. I just want to get the best medical advice and treatment and I will do all I can on my end to manage this and limit progression. As you say, it's hard to predict, but like anything, I feel if I do all I can, you can't ask for anything more.

Thanks again, your post helped keep my attitude positive!

[Fredca]

Being diagnosed with peyronies always hits hard. I had it at the age of 28 and it went pretty much as with Skaldborg hereunder. In the end its never to sure where it ends, really. I had some rude progression of the disease going for a 50 degrees sideways angle but somehow, that has become undone over the duration of 3 years. I have lost some girth though, but I dont think thats the end of the world. That felt a lot different 2 years ago but Ive learned the disease can also better itself.

I also think that, accepting the fact that your penis is in a state of inflammation and you should avoid putting too much strain on it and take good care of it, and not constantly proving to yourself its still fine and definitely dont touch it all the time, could prevent more dmg from happening.  

[dioporcolorisolvo]

@charlie44:  you have 44 years, you are young, but there are people much younger than you that have peyronie...(i have 28 years). So don't despair.
Drugs that are most effective are:
pentox,
coq10,
carnitine.

Vit E is not useful.
L-Arginina e Propionil Carnitina togheter improve a lot the erectil function.

Estensor is useful and also VED, but in the acute phase you must be CAREFUL to respect your body's signs.
Pain = stop.

[charlie44]

Guys....thanks for the feedback.

Diopor...I hear you. I feel bad for guys who get this younger than me, and even worse are single. I would have been single at age 28, and it would have been very hard to deal with then. I am married now, and my wife is supportive and we'll work through this. Having to deal with it being single would have been very tough, and I have real empathy for anyone who is going through this at that stage in their life.

I am on the same page when you say "pain = stop"....My doctor told me to take 2-3 motrin an hour before sex so you the pain would be dulled. Of course I have not done that. Like you, I was assuming pain is your bodies way of telling you something is wrong.

I am going to see a Peyronies specialist in 2-3 weeks, and until he tells me what is and is not ok to do, I will definitely be careful not to hurt myself anymore. I will definitely bring up Pentox if he does not.

My current URO did say to get an erection every couple days to stretch the penis and help prevent further degradation. He was clear in saying you don't have to have sex or climax, etc....just get an erection so you are stretching/using, etc....and I definitely see the logic in that advice.

I have not had a problem getting an erection, but keeping it is harder. I think part of that is mental....you know how it is...once you are diagnosed with something, it affects your mental state, and accordingly your physical one.

Again, I greatly appreciate the advice, and welcome anymore. I will let everyone know what the specialist has to say as well.

...ps...Thanks to Fubar as well who emailed me some advice.

[dioporcolorisolvo]

Guys....thanks for the feedback.

Diopor...I hear you. I feel bad for guys who get this younger than me, and even worse are single. I would have been single at age 28, and it would have been very hard to deal with then. I am married now, and my wife is supportive and we'll work through this. Having to deal with it being single would have been very tough, and I have real empathy for anyone who is going through this at that stage in their life.

I am on the same page when you say "pain = stop"....My doctor told me to take 2-3 motrin an hour before sex so you the pain would be dulled. Of course I have not done that. Like you, I was assuming pain is your bodies way of telling you something is wrong.

I am going to see a Peyronies specialist in 2-3 weeks, and until he tells me what is and is not ok to do, I will definitely be careful not to hurt myself anymore. I will definitely bring up Pentox if he does not.

My current URO did say to get an erection every couple days to stretch the penis and help prevent further degradation. He was clear in saying you don't have to have sex or climax, etc....just get an erection so you are stretching/using, etc....and I definitely see the logic in that advice.

I have not had a problem getting an erection, but keeping it is harder. I think part of that is mental....you know how it is...once you are diagnosed with something, it affects your mental state, and accordingly your physical one.

Again, I greatly appreciate the advice, and welcome anymore. I will let everyone know what the specialist has to say as well.

...ps...Thanks to Fubar as well who emailed me some advice.

For the erection, as supplements you can assume L-Arginine and Propionil Carnitine.
2-3g of L-Arginina, 2-3g of Propionil Carnitina, every day.

[fubar]

Justmyopiontoday

Not much help .look into  other therapy and or suppliments ( ie cialis, pentox).The ved can work miracles.  

[dioporcolorisolvo]

How long does the acute phase last?

What is your experience?

I have peyronie since 8 months and disease goes on in spite of drugs.
My girth is worsening day by day...

[Pfree]

So is mine. The urologist I last saw several weeks ago did not say I was in the acute phase, but I must be because the plaques are getting larger and harder. I first felt pain about two months before the plaque started to appear. That was almost six months ago. I have often read about a trauma phase, but I recall no injury. I don't think medical science has really honed in on all the factors, but it appears that it can take anywhere from a few months to maybe a year. It is maddening, that's for sure! Perhaps some of the long-standing members here can add some information. Good luck.

[fubar]

I never felt lumps or scar tissue until a month ago.I had the deformity at the beginning onset. Not much pain started on pentox and cialis as soon as I could.Started using the vitality ved as soon as I got it.Had to stop the ved therapy for a while because of other physical problems.Had my eye on a traction device and bought one.I have used it aggressively and moderately and want to use them both In therapy but have not so yet.

It is hard to say how long the acute stage last.I personally think therapy and pentox keeps keeps the scar tissue young giving you a chance to correct the damage.Once calcified could make the damage little harder to manipulate to you favor.

Just my perspective through the positive results I have had.More pentox and cialis on its way!

Fubar

[charlie44]

My peyronies started in April as pain made me aware of something going on....by the time I could see the Urologist in August, I had small lumps of plaque on each side of my penis, but the pain was gone. The urologist said the pain is caused during inflammation which is the scarring occurring. I was hoping since the pain was over, it would not progress (on Pentox since doctors visit). Last week the pain came back (night erections wake me up), and sure enough, I now have a new dime size plaque lump the right side worsening my hour glassing.

I assume this cycle of no progession, than progression, can continue back and forth till finally out of the acute phase?

[dioporcolorisolvo]

Peyronie is an hard work of mind and patience.
Whit Peyronie we are forced to face the our deepest fears.
I'm 28 years, i have it since 8 months.
Every day is a day of work for my mind.
There are not guarantees, there are not assistances.
There is only your power of soul.
And it can't not to be around.

[crashbandit]

Yep, I seem to be on the inflammation teeter tooter. The pain with flare up for awhile then calm right down to nothing and cycle like that. I guess it shows how on the edge my injury is all the time. All depends on how much sex or other factors that tip the scale from one side to the other. I'd love to find that magic bullet to put a stop to this madness.  

[Fred22]

. I'd love to find that magic bullet to put a stop to this madness.

Wouldn't we all!!

[snowydreams]

How fast can Peyronie's or the ED associated with it worsen?

[0x5555]

Mine took about 5 months to get really severe.  At first it started as a slight indentation but then as it progressed the area got more and more contracted to the point that it's now quite obvious and hard.

If you are newly diagnosed MAKE SURE you go to a Urologist.  If it's Peyronies (and only a urologist can know for sure) Pentox has a 50% change of helping you not progress.

Likewise be careful to not injure yourself - if you have any pain whatsoever stop having sex.  That's my opinion that some others don't agree with but it makes sense to me.

[dioporcolorisolvo]

How much did your acute phase last?

[james1947]

My acute phase lasted 5 to 6 months
James

[newguy]

It's hard to put a timeframe on it because it differs from person to person.

[james1947]

My was a very slow ordeal. It took 24 (or maybe 26)months to get from a very small dent on the base of my penis that made my penis to get to the left, a very little bit, than the bent to left worsened very slowly with the plaque growth.
A banana shape up developed also very slowly, the banana shape is done by a cord like plaque from the base of my penis up to the glans.
Finally, on the middle of the shaft on the right side two small hourglassing developed from month 16 to month 26.
The ED developed also very slowly. When the Peyronie's stabilised, the ED stabilised also. The ED don't get worst from this point.
I had never experienced pain so I can't advice in the subject, but my private opinion to stop sex is not a good thing. To be carefull during sex yes, but not to stop.
I have to say that regarding sex I may be wrong and 0x555 may be right.
Before going to a uro, make sure he is a good Peyronie's expert and not just a regular uro. But also a regular uro if you don't find a Peyronie's expert in your area can make an ultrasound and see if you have plaques or not.
James  

[james1947]

Unfortunately for me, the acute stage of my Peyronies is back.  
The first acute stage lasted 24 (maybe 30) months
Stable stage to month 30
Again acute stage with worsening curve up and worsening ED from month 36 (now at 42 months)

James

[dioporcolorisolvo]

Unfortunately for me, the acute stage of my Peyronies is back.  
The first acute stage lasted 24 (maybe 30) months
Stable stage to month 30
Again acute stage with worsening curve up and worsening ED from month 36 (now at 42 months)

James

As i said, there are no treatments for this disease for the first 4-5 years.

[swolf]

As i said, there are no treatments for this disease for the first 4-5 years.

What exactly do you mean by this?

[dioporcolorisolvo]

As i said, there are no treatments for this disease for the first 4-5 years.

What exactly do you mean by this?

In acute phase there are not drugs that can improve or stop the progression if there is a serious case of peyronie.
People that have known improvment in this forum have known those after many years.

[LWillisjr]

Sorry but I disagree. There ARE thinks you can do during the acute stage. Using a VED or traction can prove effective in retarding or reducing the amount of change or deformity during the acute period. And the acute period is normally more along the range of 12-18 months. Yes there are exceptions and some on the forum have experienced acute phases longer than this. But I don't think it is fair to say nothing can be done for the first 4-50 years.

Les

[james1947]

I will second lwillisjr on every word.
In the acute stage you have the best chances to stop and even revers the disease.
Unfortunately I have not done nothing to treat my Peyronies in the first 30 months and this is the time when I get to where I am.
From reading the forum I understand that also other forum members that treated they Peyronies late are in worst situation than people that treated this disease early.
I am sure that if I had treated it early my situation was much much better today!!!

James