I don't understand can peyronie's get better on it's own?

[technique755]

I see so many things that are controversial. Some people say it can't ever. Even the urogolist's Registered nurse at a peyronie's specialist said "it doesn't get better it can only get worse. in some people it stays the same but without treatment will usually get worse at some point."

I don't understand though, many ACCREDITED websites state that in "10-15% of people it just resolves" but then i saw another post by someone on this forum saying something like "That 15% doesn't exist. It is just a fabricated number" or something like that.

But here's what i think, why would you hear from people that got better? If i got better out of nowhere you can gaurantee i wouldn't be sitting on these forums and googling things. I'd just be happy and go back to how i was before. Just as any normal person.

So can we really say it can't spontaneously resolve?Or can it? This is again a yes or no question and i'm getting "sortas" on it and i just would like a "Yes" or "no" and why. I'm voting for yes. The reason being is every persons body reacts in a different manner to scar tissue.

[NeoV]

This question has been answered elsewhere on this forum earlier this month,

Will peyronies cure naturally - Peyronies Society Forums

I'd say emasculated explains why we have that % listed online or elsewhere.

My own opinion, is that it cannot recover on it's own period. Some treatments may help you recover some function, straightness, erection firmness, length, girth, etc. But it is physiologically impossible to "recover" since your scarring replaces healthy tissue. Until the normal population has access to tissue engineering, it is impossible. However, it can "get better", as in "improve" on it's own in some cases due to natural erections re-modeling the scar tissue, while you avoid more trauma over the years. You want a specific answer, you need a specific question.

Can it "resolve" as in "cure" without treatment? NO
Can it get better, as in improve, YES

[technique755]

I noticed whenever you ask something online on support forums like this 9/10 people always have these vague and pessimistic answers. I Remember one time i asked on this forum about something i had going wrong with me (not peyronies) and they told me that i wasn't going to get better and have all these side effects.

I made a complete recovery and never visited that site again.

I'm hoping to do the same with this, and even if i do get diagnosed with this, i'm going to do every single possible thing i can do or think of to fix it.


Also, Neov, i do not believe you have a full comprehensive understanding of scar tissue. It DOES replace healthy tissue but if you work on it (in some cases) and take supplements(like people recommend here) you can destroy some or all of it. The body can pick up that it is missing tissue in an area and sometimes you can gain some back. I've had this happen to me before in another part of my body.

Edit, Neov  I actually meant "cure" . Is it possible to be "almost completely CURED" then? Was that specific enough? In other words it's like you basically do not have peyronie's because it's "that mild" can people get it to that stage?

[NeoV]

Your tunica is not your skin, nor is it your liver. I have to stress this point here, you want a specific all encompassing answer, then you need to ask a specific question. I'm not responding negatively only honestly. The idea of "cure" or "resolve" should be defined. There is no 100% in science, only 99.9999999999 and so on, as I'm sure you understand.

Example questions:

Q:Can Peyronie's improve without treatment?
A: Yes! But very unlikely. The disease is in general, progressive and ruthless.

Q: Can Peyronie's improve with treatment.
A: Yes, quite likely. : )

Q: Can you get your physiologically exact original penis and erectile function back after Peyronie's without treatment?
A: No, there is no record of anyone's penis regrowing itself to fill out it's lost dimensions that I know of, nor has there been a single member here who can report having done so.

You have reason to be hopeful, but in the end you may want to stop seeking an absolute answer on this one. Peyronie's is not like other diseases since we are dealing not only with function, but with an aesthetic aspect as well as sensations, performance etc.

[NeoV]

Edit, Neov  I actually meant "cure" . Is it possible to be "almost completely CURED" then? Was that specific enough? In other words it's like you basically do not have peyronie's because it's "that mild" can people get it to that stage?

Yes! My Peyronie's is nearly "cured" in that sense. Functionally I am almost entirely done with it, though very rarely I have inflammation. My deformity is mostly gone and girls cannot even recognize it if I show them. My case is MUCH better, and for a long time now I've considered myself "functionally cured".  I am not completely cured though, and I think this is important to note.

I am optimistic about this disease, as most of us are. I think you will tend to get negative answers when you ask about "cures" here. Since for the few of us who have gotten improvements, it's taken years.

Stay committed to this disease, and I strongly think you will find some improvement.  

[nemo]

technique, you have a funny way of asking a question, then pushing and pushing trying to get the answer you wanted to begin with. Being that you are (unfortunately) new to the ranks of Peyronie's sufferers (if, in fact, that turns out to be your diagnosis), maybe all of our time can be better spent with you reading the information that already exists on this forum rather than asking question and trying to negotiate their answers. Frankly, it's more than a little annoying, and I'm certain that's not what you're intending.

I know you're in panic mode, and I sympathize. But you can learn a lot on this forum - I'm not certain you're at the point yet where you're ready to start educating us about Peyronie's scar tissue healing.

Nemo

[technique755]

I have another question that is about peyronie's but not this exact topic on getting better.

It's about hyperthermia treatment. I've been reading some fairly promising things on it and on previous studies on other scar tissue.

Here's the problem. My peyronie's (if i have it) would be new. Therefore, it might be in the "inflammatory" stage. Meaning puttnig a bunch of hot/warm compresses on it would cause additional scar tissue.

BUT, if i wait too long it will become "calcified" or "less pliable" meaning the hyperthermia treatment would logically be less effective.

Could you give me your own personal estimate as to when i should start this therapy if i would like to?

[technique755]

Nemo, i'm not trying to offend people. But if you read my example you'll see why i'm talking/typing the way i am. Everytime i ask on any type of "support forum" i always seem to get ridiculously "pessimistic" responses. Like i said in my previous example i asked on a forum about something different i had and everyone said it was looking real bad. I was cured a month later and never visited that forum again. So when people say "peyronies is REAL serious.
It's going to probably get worse and it's not looking too good. You might not get back all your girth,etc"

I kinda am thinking" Says who? Are they my body? What if their personal view is BIASED because of how ruthless peyronies was to THEM. That doesn't mean it'll be my case, and my views."

NeoV, also could you give me a % you have got your peyronie's to? Let's say 100% is your penis BEFORE peyronie's. Fullgirth, full function. No curve.

What % would you rate Yours. What treatments did you take and at what times since you say you are ALMOST "cured".  What would you have done differently and why? What should i be doing right now approximately 45 days after a possible "peyronies injury" aside from the usual treatments. (pentox,ved,cialis)

[nemo]

Regardless of what you experienced on some other forum with some other issue, Peyronie's is unlike most medical issues in that it's not understood very well even by scientists studying it.  The many years of anecdotal evidence we have on this site tells us that no one has ever gone back to 100% the way they were before Peyronies Disease. If you are the first, I will sincerely take joy in it and hope you will come back and tell us. But realistically, what we all hope for is what Neo has described, improving to the point that the difference between what you are and what you were pre-Peyronies Disease is so negligible that you don't really care. THAT is about as close to "cured" as I've ever heard of anyone with Peyronies Disease being.

Nemo

[technique755]

Neov are you there? You were responding a lot then left.

[NeoV]

Nemo hit the nail on the head.

Technique,

You must understand that this is a progressive, fibrotic, and degenerative disease. All we have are studies to help us, and you have to understand that there are debates regarding the nature of the studies, and what the true face of the disease exactly is when looking at the numbers. Men tend to have multiple scars, shaped uniquely, on different parts of the penis, in a way that no other man will. Each case is a unique mess and a doctor's worst nightmare. This is because unlike the liver, we do not measure satisfaction with one's penis purely based on function. Many men, after having this for years, have some improvement, but then have worsening for no apparent reason. While diet and exercise are very important for fighting the disease, many men who are in great shape, exercise regularly, and eat a flawless diet still get the disease, and it worsens for no apparent reason. Many of us got this at a young age. There is no single description that best fits Peyronie's. It's subtle and debilitating both physically and psychologically.

You may live a very sexually satisfied life even with Peyronie's. It is not guaranteed to get worse, but it is likely to if you continue to injure it and do nothing about it. Let me say this in a way that may ease your mind, if your case is mild, and you address it now (somehow), in my opinion you are likely to not have worsening and may even have some improvement.

If at my worst my general happiness and state of my penis was down to 75% from 100% pre-disease, it's back up to 90%. But even that may be an exaggeration.

I can't advise you on hypothermia, and I don't even think the best specialist could either, but my basic feelings are that it always helps at any time. Test it yourself and see how your deformity changes, or doesn't. I recommend starting all treatment's immediately. The oral regimen, traction, and VED therapy. I posted on the improvements boards regarding what helped me the most, check that out HERE, but mind you it's already becoming outdated.  

[welshwales]

technique, you ask a question then get upset over the honest and often very well informed answers. People here are taking the time to try to help you understand the nature of this disease. And to be honest, your response to the efforts of the other men on this forum who are trying to help you is petulant and ungrateful. I suggest that instead of debating a subject of which you clearly have no understanding, you spend a few days reading up and educating yourself.

[james1947]

technique

In addition to what welshwales has written.
You have posted:

Neov are you there? You were responding a lot then left.

We are all volunteers on the forum, no one is paid here to answer your or other people question.
Each spend time on the forum according to they time. Being on the forum is not the main preoccupation of no one.
I'm sure NeoV will respond when he can and if he have what to say.

James  

[technique755]

I read that peyronie's is characterized as an abnormal amount of scar tissue and abnormal excess scar tissue resulting in a plaque.


That being the case, that means there is a clear difference between having minor scar tissue on the tunica and an excess build up forming a plaque.

Is that not correct? In other words i could have a diagnosis of minor scar tissue there but not peyronie's because peyronie's is in itself it's own disease with a process as opposed to a bit of scar tissue.

[nemo]

technique, just enroll in law school - you're clearly destined to become a lawyer!

If you have scarring in the penis that has created a curve in the erect penis, that is pretty much a textbook definition of Peyronie's Disease.  

Nemo

[technique755]

Damnit! So there is no "it's just a scar" if it's a scar then its automatically peyronies? Shouldn't peyronies just be called "scar tissue" then?

[james1947]

In most cases as Nemo has said, scar+curve=Peyronies (maybe 99.9%).
Sadly, we can't call it just "scar tissue" (or induratio penis plastica (IPP) or chronic inflammation of the tunica albuginea) as the definition was given by a French Dr. De La Peyronies more than 200 years ago.

James

[Thisismyusername]

I honestly doubt peyronie's disease ever goes away on it's own, or even with treatment.  By "goes away" I mean the scar tissue is dissolved and normal tissue returns.  

I definitely think peyronie's disease can improve, where by improve I mean symptoms improve.  For example, someone with a curve might develop scar tissue on the opposite side which results in a straightening of the penis.  Pain often resolves over time.  Inflammation may reduce over time.  

My best guess is the 10-15% statistic is a combination of people inaccurately self reporting, and improvement of symptoms to the point of peyronie's not being relevant anymore.  For example, someone might develop a significant curve, then develop scar tissue on the other side, correcting most of the curve.  The penis might be slightly shorter and narrower and still slightly curved, but back to full functionality, and this may be reported as spontaneous improvement.  

In my opinion there are no effective treatments to cure peyronies disease, although there are some treatments which in certain cases can improve symptoms.  

[technique755]

Another pessimistic response as i predicted. But i do understand what you're saying and it does make sense. The way i'm seeing it is i haven't gotten diagnosed and even if i do get diagnosed i have numerous things working to my advantage. I'm 21 years old and healthy. I know any age can get this but i have no doubt in my mind that being younger will help the healing process as your body is more "resilient" when your old and have damage to your genitals the damage is amplified tremendously. Also, i'm assuming being younger will help me with a "over time" approach as well.

Most likely if i get diagnosed (in one week we will find out) then over time i have no doubt the condition will gradually get better due to me being in 100% flawless health right now. I know others are in the same situation but on top of that my body already has a natural straight up resilience to scar tissue. Like i've read before a lot and a lot of it is based on pre-disposition as well as age.

I'm not trying to come off rude with this despite what people keep misinterpreting i'm just stating theres a lot of pessimism. Although that might be the case for  some on this forum (it gets worse, degenerative, can't always help it) i'm gunna stay positive and try every single possible thing i personally believe to be helpful as well as the recommended treatments.

I will most likely use-

Ved
low dose cialis
Pentox 1.2k a day.
Vitamin e-800-1200 mg daily.
Rubbing Vitamin e in and on the plaque area.
Hyperthermia therapy. Starting in about a week or so. That way the initial healing phase will be over but i will still be under that 3 month period before i get hardening and calcification of the sort at all.

[nemo]

technique, I'm glad you've got Peyronie's Disease completely figured out! Impressive work for someone so young, figuring out a condition that has baffled medical science for a couple centuries. Since we're providing nothing to your research other than pessimism, maybe you should go off, meticulously document your "technique" and return when you've licked this thing. Then come back and tell us how you're back to 100%, and we'll all follow your protocol to the letter.  Be sure to take your attitude with you.

I'm especially sensitive toward young guys who develop Peyronies Disease, but your attitude is not making you an ideal candidate for help here.  

Good luck,
Nemo  

[technique755]

I am not being rude i'm just being factually honest about the things i'm saying. I'm not saying i've got it all figured out, i'm just going off of basic medical experience mixed with a bit of common sense and also utilizing some of the things i've been told on this forum and from researching possible "cures" or things that  could help.

[nemo]

So you think the guys here don't have access to either "basic medical experience" or "common sense?" Many of us have been dealing with this for many years - many from a young age, like you.  

Learn, grasshopper - don't try to teach until you cure yourself.

Nemo

[technique755]

I went to med school and have my RN (registered nurse) so unless there are a lot  male nurses on this site( doubtful) i don't know about that.


Regardless, i'm just worried about this and you can see why i simply can't accept pessimistic answers. Even if they may be true. To be honest it does geniunely sound like some of the people on this board maybe a bit dramatic or may have dealt with serious cases themselves and thus project how "brutal" peyronies is. This is a common psychological mechanism called deflection. Peyronie's was really bad for the people responding so that means it's most likely so bad for everyone else. The funny thing is, TONS of websites say "most men just develop a minor curvature and that's it" basically.

[nemo]

And I hope that's the case for you. Do let us know.

In the meantime, stop whining and complaining about the quality (or timeliness) of answers you get here from men offering their experience and wisdom on this. RN or not, there are many on this forum who have more experience and knowledge of Peyronie's Disease than your average Urologist and have certainly devoted more time to researching it. Believe what you want to believe, do what you want to do. I'm done with the discussion. Good luck to you.  

Nemo

[Old Man]

technique755:

I echo Nemo's comments below. I have just reached the ripe old age of 85!! I developed Peyronies Disease at age 24 due to a sexual accident. I developed ED at the age of 55 due venous leakage.

At present, my Peyronies Disease symptoms are what might be called ''remission'' using the words of being a prostate cancer survivor also since 1995, 20 years this coming April.

Bottom line, as Nemo says, RN or not, my over 60 years of surviving my first bout (yes, I have had several "returns" of Peyronies Disease symptoms) has given me as much or more knowledge of Peyronies Disease than most uros and/or GP will ever learn about the problem.

In addition, I work very closely with my personal uro by counseling with her patients when  they ask for "man to man" talk instead of using her knowledge. Apparently she has confidence in my judgment to help her patients through those difficult first days of being informed they have prostate cancer or Peyronies Disease.

So, being so young and not as knowledgeable about this horrible mess called Peyronies Disease, I strongly suggest that you heed the words of Nemo. And, lastly take the advice of us old "farts" who have been there and done that with ED and/or Peyronies Disease. There is much knowledge on this forum that doctors never have the time, nor want to take the time, to apply to their patients!!

Old Man

[technique755]

I appreciate it if that was a geniune good luck wish.  

[Old Man]

tech:

It is a good luck wish! Take if from someone who developed this mess way back in the 1950s when there were ''no treatments'' for Peyronies Disease.

Old Man  

[technique755]

Old man, in all seriousness-

If i start the "Recommended" treatments along with a few of my own that may or may not help PLUS the ved,pentox and low dose cialis. What is the outlook for me?

Is it actually possible for the scar tissue to go away but actually gain back some normal tissue girth too?

[Knight]

Technique755
I think you have as good of a plan as any other you will find on this or any other forum. Take that "I can beat this" mentality and add as much research and common sense you can and begin your plan of action. Better to have the attitude of "I can beat this" than one of doom and gloom. In my journey of about 10 years I have been on both sides of that fence.

I hope you find something and I hope you bring it back to all of the rest of us.

Good luck!

Sincerely,

Knight55387

[Old Man]

Tech:

OK, the outlook for you is either one or two things: I will use my personal case as an example>

1. After doing all the treatments/therapies listed and/or suggested on this forum, your will see some success or a failure. But, you must try some form of treatment or therapy to know what your outcome will be or what may caused your failure.

2. Take my personal case for example: Back in the 1950s, I worked for many years with my first ''round'' of Peyronies Disease. Many and varied therapies were tried, but most failed. Eventually, one day the symptoms just disappeared. Then in 1995 after a radical prostatectomy, which rendered me totally impotent and with urinary incontinence, the VED therapy was prescribed for me. I used my own devised VED protocol (part of which is now posted on the VED board) for just over a year. The result was that all of my Peyronies Disease symptoms were gone and have not returned since.

Today, I can achieve a natural erection with manual stimulation and by using a cock ring I can have sex again. The VED is used on a maintenance basis several times a week.

Old Man

[liber]

i have followed the VED protocol for one year without benefit.

this forum primarily offers, ved, traction, pentox, ciallis and ziaplex that and a host of other strange possible cures (that come and go almost monthly). there has never been a single success story on this forum during the year i've viewing this site.

[Skjaldborg]

liber,

While it's true that this forum doesn't produce vast amounts of success stories, particularly in the span of only one year, success does happen. In my case, when I took pentox 5 years ago, my pain went away and I started to see physical improvement in a few months. I stopped pentox, but have continued to see improvement little by little over the last few years. My girth and length are about 95% what I used to be and my erectile functioning is perfectly fine (perhaps even a bit better than before: I have lost a bit of sensitivity at the glans so I can have sex longer without coming. Also, my refractory period is about 20 minutes so I can have sex again and not feel sore or too sensitive.) I went through a divorce and started dating again and the new lady could not tell there had been anything wrong with my penis. She would not have known had I not told her.

Part of the "success" in dealing with Peyronie's is learning to overcome one's new limitations by not letting the psychological impact control one's life. The treatments we have are not perfect and they don't work for everyone, but they are the best treatments we have available.

-Skjald

[james1947]

liber

This forum is not offering nothing as it is not a commercial site.
It is just a base of knowledge accumulated during the years form posts of thousands of people that each one can use according to his understanding.
VED didn't helped you (sorry about that), but it helped me and many many others on this forum.

James

[Knight]

I am aware of several success stories from this forum. In fact, some of the guys are getting very good results from the recent Xiaflex treatments. It is not fair or accurate to state there has never been a single success story in the last year.

You need to look harder with an open mind in my humble opinion.

Good luck!

[james1947]

I missed your sentence liber:

there has never been a single success story on this forum during the year i've viewing this site.

For sure liber, you are not reading too many posts on the forum if you missed all the posts regarding improvements.

James

[welshwales]

Wow, the arrogance just drips off your words technique755. You most certainly are not the only member of these boards who attended medical school, nor are you the highest qualified, not by a long shot. But most don't feel the need to use their qualifications to make a point. It is knowledge and experience that counts regarding a condition such as Peyronie's Disease.

You claim to use basic medical experience and 'common sense' to interpret this poorly understood disease, when as a medical professional you should know that diseases do not recognise common sense, nor do they follow predetermined pathologies set by other conditions.

A senior urologist, the kind of specialist you would see in the U.S. or Europe for a proper diagnosis of Peyronie's Disease, will have at the very least eight years of intense medical training. Even such specialists little understand how this disease functions. There are very few real Peyronie's Disease experts in practise today, such as Levine, Lue, Wang and Keuhass, who collectively have over a century of experience in dealing with this disease, and even they would not make the kind of generalised statements that you have.

Perhaps you would like to write an open letter to the world's leading Peyronie's Disease specialists and inform them of your ground-breaking understanding of this condition.

In the meantime maybe you stop insulting or degrading the men on here who are trying to help you through, in some cases, many decades of personal experience, and who have helped many men cope with and improve the symptoms of this disease.

For some reason that I am incapable of understanding, you seem unable to show any kind of gratitude towards the men who have taken time out of their lives to try and help you. But when it comes down to it, it's your loss. You'll understand in time, hopefully before it is too late.

[ThisWontWork]

YES! peyronies can get better on it´s own - maybe - but you may give it some support. I participated in the xiaflex phase3 trial. I had from the beginning a deviation of 70° to the left. After 8 injections there was still a 60° deviation. So my conclusion - forget all what you read about Xiaflex - it´s a scam!

After the trial I started with Pentox , L-Arginie and some VED-exercise. The deviation to the left is now gone but have still some loss in the girth.

Maybe  many of you have heard about the placebo-effect. Your body have the ability to heal it self. If you strongly believe that "sugar-pills" will heal you from peyronies the placebo-effect will support you in the healing process. Remember that those who got placebo in the trial had almost as good result in the trial as these who got the real stuff

[ThisWontWork]

YES! peyronies can get better on it´s own - maybe - but you may give it some support. I participated in the xiaflex phase3 trial. I had from the beginning a deviation of 70° to the left. After 8 injections there was still a 60° deviation. So my conclusion - forget all what you read about Xiaflex - it´s a scam!

After the trial I started with Pentox , L-Arginie and some VED-exercise. The deviation to the left is now gone but have still some loss in the girth.

Maybe  many of you have heard about the placebo-effect. Your body have the ability to heal it self. If you strongly believe that "sugar-pills" will heal you from peyronies the placebo-effect will support you in the healing process. Remember that those who got placebo in the trial had almost as good result in the trial as these who got the real stuff

[james1947]

ThisWontWork

The Xiaflex didn't work for you, we all understand that already and understand your frustration. The reasons can be many, and we discussed in details the subject on the forum.
But your statement:

forget all what you read about Xiaflex - it´s a scam!

Makes all the forum members that are reporting very good results from Xiaflex as liars.
Proposing you to read the Xiaflex related topics to see how it helped many on the forum.

James

[skunkworks]

I Remember one time i asked on this forum about something i had going wrong with me (not peyronies) and they told me that i wasn't going to get better and have all these side effects.

technique755 it's not a question of pessimism, rather a question of diagnosis. Peyronie's is a chronic condition, so if you get an injury/bend and it heals itself then by definition it was not Peyronie's. Some people do injure their penis and it heals completely, those people never had Peyronie's.

Can it be healed with treatment? Current treatments can make things a lot better, but I've not really heard of anyone with 100% resolution. Can certainly help your erection quality and decrease the severity of the bend. If it was a mild bend it could become imperceptible if you respond well to treatments.

[technique755]

Skunkworks, so you are saying it IS possible to bend my penis and it goes back to normal? Because that's the opposite that everyone here has been telling me.

I've gotten the answer " If you penis is now bent and it wasn't before 99.9% chance it's peyronie's"

So i guess i have peyronies then?

[skunkworks]

Not back to normal, if it is Peyronie's. People can get much better, but I have not heard of 100% resolution. Maybe we'll see some cases with people trying xiaflex or stem cells.

How long have you had it? How severe is the bend?

[technique755]

I'm referring to "can this be a bend and NOT be peyronie's" is basically what i'm asking.


The bend is probably about 16 degrees to the left. No pain yet. Less then a month or a bout a month had it. Never had a bend before.

[skunkworks]

It'd probably be resolving already if it was going to do so naturally, so if I were you I would assume it is Peyronie's and go from there.

[technique755]

Really it would take less then a month and a half for a bend to just resolve? ok..

[skunkworks]

"resolving"

As in you'd be seeing some improvement, not stability or progression. Which is rare, so you should assume Peyronie's and treat it as such.