Progression of Peyronie's Disease

[nemo]

Joe, I'd get to a urologist immediately and explain what's going on ... now is the time to take Vitamin E, and possibly Pentox and L-Arginine and maybe some other things ... get on it quickly and maybe you can avoid anything getting worse/hardened/calcified, etc.

Good luck brother,
Nemo

[Liam]

Joe, I first noticed a nodule.  The pain followed.  Thats just me, though.

[j]

I took 800IU of vitamin E a day, for years. Also applied it topically to the lumps in my palms.  It did nothing.  

[tmurph]

is there a difference between Peyronies Disease and ED? please explain...thanks

[Tim468]

>>is there a difference between Peyronies Disease and ED? please explain...thanks<<

Um, yes there is a difference.

In ED, your penis cannot get hard or erect.

In Peyronie's Disease, when it does get hard, it has a bend or a kink. Many men with Peyronies disease have some degree of ED.

Are you here because you have either of those problems?

Tim

[Liam]

ED = Erectile Dysfunction

We throw acronyms around pretty freely.  

[jacqueslee]

Hello everyone,

Need some advice here from all.

Is Peyronies Disease always associated with pain?

If the syntom of curved penis has occured for about 4-6 months without any associated pain, what does it mean?

Really appreciate all answers...

[Tim468]

Peyronie's Disease is NOT always associated with pain, just usually.

If the shape of your penis seems to have become permanently different, then it is probably Peyronie's Disease. We always recommend (and I am about to recommend to you) that anyone suspecting this seek out a good urologist who knows about the disease for a diagnosis. VERY rare other diseases such as cancer can masquerade as Peyronie's, so seeing a professional is absolutely critical to starting the road to healing.

Tim

[jackp]

jacqueslee
I have never had pain with Peronies. I had a 20 degree up curve that corrected in 12-18 months with 400 IU of Vitamin E three times a day and Potaba. That was in 1996. I took Vitamin E for about 11 years until I had to have heart stints and went on Plavix.
Hope you have good result. Watch out for shrinkage and fibrous in the corpora. I wish I had that advice in 1996 and has started with the VED. "Old Man" has a good VED regime.
Good Luck, This forum has a lot of great information.
Jackp

[Steve]

jacqueslee,

I agree with jackp...the only pain I ever had was for about 24 hours right after my injury.

[dahc]

I never had any pain either. It would be interesting to know what the breakdown of symptoms are in percentages.

[Ptolemy]

Initially I had barely noticeable pain but enough to cause me to explore around. I found a pea sized lump, thought it was cancer and trip to the Urologist introduced me to the new term "Peyronies." I had not pain since the first 2 months.

[panic]

Hello. I'm new to these forums.

I began feeling pain in the shaft of my penis about 5 days ago, after getting a bit carried away with myself.  It's a aching, insignificant, barely-noticeable sort of pain, interspersed with occasional "bursts" of pain which are strong enough to make me wince. I also have two faint (but very real) raised "bands" which run half way around the side my penis. After a lot of research, I've come to the conclusion that I am experiencing the early stages of Peyronie's disease.

There's no bend yet, but this morning I was trying to get an erection so that I could examine it - and perhaps take some photos - but I couldn't get an erection. I was watching some of the most explicit porn imaginable, and there was nothing, not even a twitch. I have never, ever, had any problem getting one, so I panicked and called the doctor. When I got there, he asked me to lay down on a table so that he could examine my flaccid, tiny penis. I also showed him some photographs of it, fully erect, from yesterday, and pointed-out the lumps on the side, which are caused by the bands. They are only small, but still definitely there.

He said that my erection difficulties were probably due to worry. Which is quite likely, I suppose, since I am very worried about it.

I had researched all the options, and read most of the studies regarding oral therapies, and decided that my best course of action would be to take all of them - the whole bunch: tamoxifen, ALC, pentox, colchicine, and possibly POTABA if the NHS would pay, and even verapamil gel if it was offered (PDLabs' self-published paper smells like a load of crap to me).

He said, (after seeing my flaccid, tiny penis), that he would have to refer me to a specialist, and couldn't prescribe anything. I gave him some print-outs of the pentox and ALC studies, as well as a review of some other treatments, and explained to him that I didn't mean to be cheeky, but that I have a mostly-biomedical Biology degree (first class, honours) and I can fully understand the studies and the risks, and that he can prescribe the drugs.

Instead, he said he could refer me to either an NHS urologist (after waiting at least a month), a private urologist (paid for by me, even though I have no money), or an STD clinic (even though I don't have an STD, so they'd just refer me to a urologist anyway). I chose the private urologist, at an estimated cost of between £80-130 ($160-260), and have an appointment for tomorrow. However, I am hoping to convince him to let me have the actual treatments on the NHS (since that is what it's for).

I know that I have Peyronies. But without a bent penis, I'm not sure whether I can get the treatments for free, even though it makes sense to treat a potential (almost certain) disease while it can actually be treated very successfully, rather than wait until it becomes much more difficult to treat. And it would actually save the NHS money in the long term.

Has anybody had similar experience with the NHS? What are the chances that the (expensive, private) urologist will just give me some vitamin E and send me home to "wait and see"? Will he even be able to see the raised bands without my having an erection? And what would he make of the bands? Would I be better-off just self medicating? I don't have money to waste on pointless referrals, especially if I'm going to have to pay for my drugs myself.

If this isn't an emergency, I don't know what is. Stupid NHS.

[panic]

Sorry about the long post.

Also, I wanted to ask some more questions:

How long do you think I have until my penis starts to bend noticeably? Should I post pictures? Or would that be in bad taste?

Even though I could get an erection yesterday, it seemed a bit "sluggish", like blowing up an old balloon, with the top of the shaft being noticeably narrower than the base until it was fully erect. Also, it seemed maybe half an inch shorter. This certainly isn't normal for me, but does it sound like Peyronie's? I can't imagine what else it could be.

[Tim468]

Well, you asked how long you have...

Dear Mr. Aptly-Named "Panic":

You may be in the early stages of Peyronie's Disease. It is more likely that your "getting a bit carried away with (your)self" has led to an injury to the penile shaft - either in the tunica or in the soft tissue that lies superficial to that layer (ie the skin). Injuries heal - in Peyronie's Diseae, injuries heal abnormally.

There is NO reason for you to assume that your penis will do anything other than heal normally over time (ie the next week). The likelihood that this will lead to permanent change is small. Given your state of distress, it is extremely unlikely that your erectile difficulties are due to anything other than stress.

Your perseveration in posting style, in desparately trying to get an erection with porn, in your self-description of your "flaccid, tiny penis" - all of these bespeak problems with your emotional state - perhaps due to this event (or perhaps chronic?). Take some time to relax and heal. I recommend warm compresses and ibuprofen at 800 mg per dose three times a day (do not exceed 2400 mg per day) for one week minimum and see what happens. It will probably all work out.

Tim

[Hawk]

Fortunately we do not have an NHS to deal with (yet) so I can't help you there.

I do think you picked a very descriptive name since 5 days post rough masturbation is awfully quick to actually have the symptoms of Peyronies Disease.  Keep in mind that the nodules or bumps we discuss are Peyronies Disease scar tissue.  I personally doubt that you have palpable scar tissue manifest in 5 days post trauma.  I would seriously doubt that if you were 60, and I would doubly doubt that if you are under 30.  There is also no way Peyronies Disease struk and rendered total ED in 5 days through ANY strictly physiological process. Few men ever experience TOTAL Ed from Peyronie's and I have never heard of such a rapid onset.  Psychologically you can turn off an erection in 5 seconds with one shotgun blast or the  onset of panic, fear, worry, or stress.  adrenalin attaches to the receptors that control vascular dilation and constriction.  

So far what we have is a sore, recently abused penis and instant ED from panic.

Your solution of dump[ping the entire kitchen sink or medicine chest down your throat at one time seems a nit of a panic response.  It may be advisable to combine a few things that either show promise or at least cause no harm.  I would suggest an anti-inflammatory for starters and kinder treatment of a very vulnerable body part.  I would also suggest that you actually listen closely to your urologist and not present your self as a frantic man that is too upset to listen to evidence.


Hawk  

[panic]

Ha ha, yes. I tried the name "penis panic", but the word "penis" is reserved, for some reason.

I suppose I should calm down a bit. But, you see, I have been taking anti-androgens for hairloss (finasteride and dutasteride) for a few years now, and after reading this article:
http://asiaandro.com/1008-682X/5/33.htm
and others, and after seeing your thread on prostate problems, I can't help but worry about it.

And it's not only the pain that worries me, but also these weird raised lines. They look like, well... fracture lines. They are certainly real, and new. I have quite a clear photo of them, if you'd care to see...

And the "flaccid, tiny penis" and the "most explicit porn imaginable" bits were just added lighten the mood, really. Although that porn was pretty filthy.

But, yes, thanks - I will go and relax for the rest of the night. Hopefully, I'll have a clearer perspective tomorrow. And if anybody would like to see that photo of my penis, let me know and I'll PM it to you, if I can. I'd genuinely like to hear your thoughts on it.

[Hawk]

Parts of anatomy and Peyronies Disease terms are restricted to reduce confusion in posting.  Otherwise it would be unclear if people are referring to a term or to a member's name when they post.

I like to watch porn.

Is this a delusional man (we get a few) hearing voices from his penis or did a member say this?  

Someone would pick the name "my penis" and the entire forum dialog would be destroyed.  "I am glad 'my penis' is doing much better"

The crap administrators have to worry about  

[Tim468]

Isn't "member" a euphemism for penis?

Tim

[ocelot556]

I have about two plaques on each side of my "member" so to speak, and it seems like sometimes - especially when fully erect - they seem really large and pulled against the skin. These are relatively recent, however, within the year - so my question is: Will they smooth out, the way surface scars do with time? I'm hoping Xiaflex not only reduces curve, but nodule size, because it's more the look of them that bothers me rather than the bend itself.

[Hawk]

I have lost about 1.75" - 2 " in length and also lost girth (although I have gained some length back).  Over the first year, I went through a 10 - 20 degree curve in all direction (first down then straight, then up, then right, then straight) I have no real curve now.  When my initial curve started I also developed a dent like a spoon would make pushed into play dough.  It was underneath the base left of center.  I could palpitate 2 beads of plaque in the dent.  They were smaller than the tip of a pencil eraser.  They gradually reduced to smaller than a BB.  

Now I feel absolutely nothing even when I am in traction.  The dent is still there but no matter what level of tissue I palpitate, I feel nothing.  It makes one wonder what depresses the tissue in that area.

The other point is that the dent is not noticeable during a low to moderate erection.  When I pump up in the VED it is the last stages of a full pump (the kind that actually dimples the head of the penis while under pressure) when the dent becomes very visible.

[Old Man]

Hawk:

I too experienced a similar situation where the nodules went away and could not be felt but still have the "dent". However, my uro who is quite experienced in Peyronies Disease and its treatment said that the tunica had what she called an adhesion inside its outer wall. She said that this would cause the tunica to be pulled into the corporal chamber. She further explained that it could be somewhat like adhesions after an operation. Sounds like that could be possible, but we have no actual proof of this.

After several years of daily VED therapy, my dent went away. However, at times the area seems to be softer than the rest of the shaft area before and after VED induced erections. I still use the VED at least three times a week for therapy in addition to using it for erections for sex. Added note for VED users: you must have patience and perserverance in using the VED as results usually come slowly in most cases.

Old Man

[nemo]

Guys, has anyone ever thought they were in an inflamation stage, and turned out not to be?  I know I'm grasping for straws here, but I'm trying to cling on to any hope available.

Last weekend, after sex, I noticed a little light tingly sensation on the right side.  My girl had been pulling on me a little aggresively getting me erect (it felt good at the time, I assure you, it wasn't ill tempered).  For the past 6 days, I've had this very vague sensation near the base on that side that sort of floats, it's almost like a tingly sensation, not really sore per se, it feels almost like a pulled muscle.  It doesn't "hurt", it's more of an awareness and if I stretch the penis a bit, that seems to make it more noticeable.  I've closely monitored for any hardening or lump, but can't find one.  Pressing on the corpora doesn't elicit any tenderness or pain.  I have no pain with erection, and have been able to have sex or masturbate every day since (which I realize may be preventing total healing, but I'm constantly checking to see if a bend is develping).  It's a hair tender I might say, but not anything like what I'd call "pain."  The gentle tingly sensation only increases if I pull on the penis (gently, of course).

I'm hoping and praying it's a combination of pulled skin/ligaments/corpora around the base giving a weird sensation and not the beginning of a full-out peryronie's attack.  This was, in fact the  area of my penis most distant from the Peyronie's, so it would be the healthiest part.  I'm loading up on ACl, E, Advil, L-Arg and going to the Uro Monday for Pentox, hopefully.  I'm also using a rice sock for heat, so I guess I'm doing all I can.

But can anyone say they've ever had some soreness or weird sensation that DIDN'T result in a peyronie's attack.  If so, I'd just like to hear it as I'm, of course, pretty uptight right now.  

Thanks,
Nemo

[Tim468]

Nemo,

Give it a rest - to quote you. On the Saturday morning, at 8:44 AM EST, the 26th of January (that would be last weekend), you said you were going to "give it a rest" - that was stated in response to our suggestions that you needed to back away from sexuality to get some perspective (I recall that you were very worried about developing ED).

Today, you way that last weekend your girlfriend "had been pulling on me a little aggressively getting me erect". It would appear that giving it a rest is not something you are really willing to do.

Now you are worried about a tingling sensation.

Do you see a pattern of behavior here that might not be working in your favor?

Tim

[nemo]

Yes, Tim, you are correct, I didn't give it a rest as you suggested, and I intended to do.  Honestly, though, and I hope you can relate, it's hard not to let the fear that something is wrong dominate your every waking moment.  Hell, if I'm not having sex or getting erect to see if it's changing, I'm feeling my penis every 10 minutes trying to feel a plaque or nail down where the soreness is coming from.  The fact that I think I recently discovered a small indentation on that side that I can't determine if it was preexisting or not only adds to the panic.  And as far as sex, I actually feel like I need to sleep with my girl every chance I get in case this is the beginning of the end for me (I realize that sounds crazy).

When I first developed Peyronie's in 2001, I felt a small hard spot on either side of my penis - no pain.  Within a few days, I was waking up with painful erections and the bend was there.  I've read though about guys having a weird sensation for days before an "attack" and that's what's informing my current freak out.

Am I obsessive about this - hell yes, I'll admit that.  I realize I sound like a nut, and truly hope and pray I'm just being obsessive.  I just never really thought Peyronie's would be back in my life, and after 7 years, I'm panicked that it very well may be coming back with this lingering "strained" feeling.  I realize all I can do it take it day by day, but you know how stressful this condition is.

[Tim468]

Nemo,

You have pretty well described what you are doing. Now, I repeat my question to you: "Do you see a pattern of behavior here that might not be working in your favor? "

My advice is to try really hard to do something different, and I think it will begin by seeing the doctor but not end there. I recommend - very strongly - that you consider counseling with a person skilled in sexuality.

Tim

ps - getting professional help for my feelings is what I had to do. I have posted before about my dysfunctional response to developing Peyronie's at a young age. I basically became a sex addict. It damaged me spiritually and emotionally and professionally. I am only now recovering from it. You might be able to do better if you pay attention right now to your needs.

[nemo]

Thanks, Tim.  No, my mental outlook is not positive or helpful, I agree.  And I will consider your suggestion of counseling - I've actually considered it before this Peyronie's scare.  If, in fact, this is Peyronie's coming back, I guarantee I'm going to need some therapy ...

Thanks for advice.

[Onni]

Hello, I'm a new reader. I could not find a way to post a new topic, so perhaps I can use this one.

I believe I have developed Peyronies Disease after the use of finasteride when I did not get an erection what se over in over a month and my genitals started to feel weird. My whole story can be found from propeciahelp.com. My dick is also narrower especially on the parts were the nodules are and more wrinkly/rubbery.

I do not have large lumps on my shaft, but if "nodules" like the ones in this picture, I found at least four. One is larger and is bigger on the right side, making my weewee bend to the left. My erections are a joke and I am 99% sure it's physical, as not even Cialis 20mg seems to help one bit. I'm thinking about taking pictures to my uro to confirm it, if I am right. Thank you.


This picture is NSFW (from wikipedia)
http://en.wikipedia.org/wiki/Image:Erectpeyronies1.jpg

[Hawk]

Onni,

I saw no nodules in this picture and I am a bit confused on what this picture shows that relates to the conversation

Also, if you will read the section entitled "Read This First" it has a lot of important information about the forum, new topics, forum rules etc.

[Onni]

I meant those ringlike things on the guy's shaft.
I will read that. I have not found any clear pictures of these "lumps" or "nodules"

[Hawk]

Omi,

That is pretty much what a penis looks like.  We all had a penis that looks kinda like that and hope to get back to that state.  I think you are looking a veins branching off from the dorsal vein that runs down the top of the penis.

[Onni]

Oh, then why is the picture in wikipedia's Peyronies Disease

I just don't know if mine is Peyronies Disease or not, but something is def. going on down there   Some varicose-veins emerged at the same time and the texture became more rugged and dark..if that helps.

[Tim468]

That Wikipedia picture is so dumb I edited the page to state it looks normal.

Tim

[Onni]

All right.

I have had very little luck in finding pictures to show how these things look like. Are there any on this board?
Thanks.

[Old Man]

Guys:

This site was posted by me before, but seems to have gotten lost somewhere among all the posts. It has thousands of photos of penises in all sizes, shapes and forms. Some show curves of all kinds, and among them are pictures that surely show Peyronies Disease in it's worst form. The site could be considered porn if one let's their mind wander, but the pictures should be used for educational purposes only. There is a lot of knowledge to be learned from them.

www.ejacu.com/

Old Man

[Tim468]

I already mentioned two posts ago how to find many many pictures of Peyronies disease with a search engine like google.

It is not hard. If one wants to find pictures that look just like something that they have that might be Peyronies - that is another matter. Start with a picture of your own and a trip to the doctor. A pic sent to me recently had no discernible lesion on it. It suggests that when we worry, we may not see as well as we should.

Tim

[Hawk]

Here is a picture of Peyronies Disease.  Hopefully you will not have to look long to notice the difference between this and subtle skin irregularities or a vein.  This is not a extraordinarily severe case.  There are many men on this forum with worse.  This is probably about a 45 degree bend.  There are 2 more pictures on the page if you scroll down.  The center picture prepared for surgery is probably a 90 degree bend.  Click on the picture to enlarge. http://www.peyroniesinformation.com/index.php?action=pictures

[Onni]

Thank you for those links.

While showering, I noticed that the base of the shaft has become much thinner (especially on the right side) and there is a "ring" above that part at which the bend starts. I would estimate it at 20 degrees. Will take pictres and go to my uro again.

[pal-31]

Hi Onni,

I think it would be best to get checked out by your urologist of general Dr. It is impossible for any of us to diagnose what you have. It may be nothing or could be a mild case of Peyronies. Either way, getting your Dr. to check you would be the best thing.

Please let us know how things turn out.

Good Luck,
Pal

[Onni]

Tim: The google image search did not give many results. It is still unclear to me how these plaques and nodules look like - a bend is easy to recognize.

Have made an appointment with an uro. Don't know what this is - all I know is that my dick did not look like this 6 months ago.

[MUSICMAN]

I think I have had Peyronies for 3 years now and I will post as to how things are going and then a question. Started with pain on getting a erection. Next came the dent / bend to the left. Bend looks similar to a left hand turn road sign. Saw a number of doctors, and was advised to do surgery. Last doctor (noted to be one of the best in the Peyronies field) advised surgery. He also said I maybe developing some plaque on the under side. That I did get the plaque but bend remained about the same. Taking Vit-E, L-Arginine.  Just started my VED routine about 2 weeks ago. None of the doctors would give me a Rx so I had to get
VED a different way. The question is have any members developed plaque the second time with out pain or injury?

[Old Man]

MUSICMAN:

In my case, I have developed several bouts of Peyronies Disease, some with pain, some without. Other times, I developed it again as a result of a slight injury during sex. There never seems to be any definite way that the mess came and went for me.

It is my firm belief that each and every guy has a different case. So, there seems to be no set pattern for Peyronies Disease. Every person experiences different symptoms and different circumstances every time. There are no two cases exactly like each other - just different each time.

Old Man

[Tim468]

Omni,

Many of us have dents instead of bends. In my case, I think that a dent formed because I was working so hard to prevent a contraction that would lead to a bend forming. I now just finished (apparently and hopefully) a time of activity of my Peyronie's Disease, during which two new dents appeared on the left side. Daily use of the narrow cylinder (to maximize longitudinal pull - for that has seemed to be the most useful) seems to have prevented a deformation.

Although I am not going to send a photo, I bet that I and others here have changes to their penis shapes that are similar to yours. You are doing the right thing by going to a doctor - let us know how it goes.

MusicMan - note above... Like Old Man, I have had this a long time and it has come and gone with regularity - though I have to sadly admit it has come more than it has gone - I wish I had Old Man's success in that regard. The VED has helped me, but I have not figured out yet why it keeps getting worse.

Your post raises the issue here that we struggle with in our decision making: if we are still in the active phase, then surgery runs the risk of fixing one problem just as another comes along. That, in turn, would lead to multiple surgeries which carry a combined greater risk of losing erectile function. However, if the bend does not respond to the VED (and I highly recommend looking into a traction device as well), and the bend makes sex impossible, I would go ahead with surgery.

Tim

[nemo]

Tim, did nodules precede your indentions, or did the indentions just appear on their own?  And was any pain evident with indentions?  I've had Peyronie's for about 6 years, but I'm only just recently noticing some indentions, so I'm still trying to figure them out.

[Tim468]

Mine just appeared. No nodules or pain.

Tim

[George999]

I think that Tim has sort of alluded to some this process before, but just for clarity, let me repeat it and perhaps expand on it.

1)  Deformities represent the progression of actual tissue fibrosis which = Peyronies.

2)  Nodules represent specific focuses of inflammation that MAY or MAY NOT accompany EITHER the process leading to Peyronies OR Peyronies itself.

3)  Pain represents the effect of inflammation that MAY or MAY NOT accompany inflammation associated with the process leading to Peyronies or Peyronies itself.

I have tried to word this VERY carefully.  But Tim and others, feel free to pick it apart.  I think it is becoming ever more clear that each of us experience Peyronies in a very individualized way.  But the underlying processes are common ones even though not all of us experience every aspect of them.  And certainly the solution is a common one as well.  A successful therapy would attack and neutralize all three of the above phenomena.  - George

PS - Hopefully, I have managed to word this in a way that will successfully navigate the fine line between Hawk and Liam  .

[Tim468]

>>Hopefully, I have managed to word this in a way that will successfully navigate the fine line between Hawk and Liam  <<

LOL

I like that definition. It leaves room for other theories, like, say, autoimmune disease and MMR shots as therapy.

Tim

[nemo]

Guys, I'm trying to figure out indentions.  The indentions I've had for about a month now are all on the bottom side of the right corpora.  They aren't (so far) causing any bending or anything, and other than the weird sensation I've had on that side they're not "painful" per se.  There's no "waisting," and from the top side everything appears normal, only when you feel on the bottom right side can you feel these indentions.

As I've mentioned, I haven't been able to feel any sort of nodule, plaque or anything hard or suspicious in the area of these indentions.  From what I've been reading, some guys get indentions after a nodule, and some get them for no reason without any nodule.  If I could shake the weird sensation/dull sensitivity on that side, I'd breathe a little easier, but as long as the sensation is there, I keep waiting for the shoe to drop.  

My question is, has anyone experienced the appearance of indentions, accompanied with mild discomfort, that DIDN'T lead to a bend or something worse?  I'm fervently hoping this is going to be a self-limiting process - as it is, the indentions aren't causing a real problem, I just don't have experience with indentions and don't know what else to expect.

Thanks,
Nemo      

[Tim468]

That has happened to me. But I have used the VED religiously.

Tim

[nemo]

Tim, how would you use the VED during a time when indentions were "new"?  Old Man's advice is to not go to a full pump, and I certainly don't want to stress this tissue.  What was your routine during a time such as this?