Progression of Peyronie's Disease

[slowandsteady]

He did explain that if you curve your finger to the degree of the curve that if you straighten you length will be that of the short side of the curve.

That makes sense.

s&s

[Lancaster]

I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.  

And there is a reason it is not established to be clinically effective.  Because it is not effective most of the time.  Heck, if pentox was the panacea you guys flaunt it to be, this board would lose most it's members and we would go back to spending our free time doing other things besides brousing here for a "effective'' treatment.

[cowboyfood]

I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.  

And there is a reason it is not established to be clinically effective.  Because it is not effective most of the time.  

Lancaster, thanks for your posts.  

mmmm, I believe what Hawk meant is that Pentox has not been "established" as "clinically effective" because no "clinical" tests of its effectiveness have been performed, only anecdotal "tests."  And, anecdotally it has been "established" as effective.  (See Dr. Lue's case study; other member posts - search "pentox").

Your statement, ". . . it is not effective most of the time", is conclusionary without supporting authority.  But, if you have some authority that backs up this statement then please provide it.  

Otherwise, your statement is merely an opinion, and not a credible one (at this point and on this forum; my opinion based on my reading of your prior posts and member profile).

CF

[George999]

I have no doubt that IF pentox was established clinically to be an effective treatment that they would readily prescribe it.  

And there is a reason it is not established to be clinically effective.  Because it is not effective most of the time.  Heck, if pentox was the panacea you guys flaunt it to be, this board would lose most it's members and we would go back to spending our free time doing other things besides brousing here for a "effective'' treatment.

NOBODY here is claiming the Pentox can cure Peyronie's, but for lot of us it has effectively halted its advance.  No one, including you, knows that Pentox would not cure Peyronie's if it was prescribed initially because it NEVER is.  The reason we are "flaunting" the effectiveness of Pentox is because we are using it and finding that it works.  - George

[SimonBart]

I had an injury about 17wks ago while having sex with my girlfriend. Basically missed the hole and slammed into her pelvic bone. Listed below is what's happened so far.

Week 1- Applied icepack multiple times each day for a week. Penis started to look bruised after 12hrs and continued to get worse for the next week until I finally went to the emergency room after reading on the internet that I might have a fractured penis. Penis was pretty much entirely black & blue by then. The doctor in the ER said that if I had come in immediately, they would have done surgery to put a couple of sutures on the laceration in my penis. He prescribed a couple of Tylenol every 4 hrs and referred me to a urologist whom I saw 3 days later.

Week 2- By the time I saw the urologist, the bruising had almost gone away. He quickly looked at my penis and said not to have sex for about 4 weeks. I was pretty stoked and thought everything was fine. I started having sex again after about 1 week (stupid me). I only had mild pain during erections and the pain increased during sex when any pressure was applied on the angle of entry.


Week4- Started noticing a bend in my penis starting where the injury was. The bend was about 30 degrees. I freaked and started researching online about penis curves and penis injuries. Started taking multivitamins immediately and hot wraps to try to encourage healing.

Week 5- Started taking L-Carnitine (500mg) 2x each day and Vitamin E (1000IU) 1x each day.

Week 8- Started taking Trental (400) 3x each day.

Week 10- It feels like I have a band of hard tissue that rings my penis where the injury occurred. When I get erections, it initially has a curve of about 30 degrees still, but I can gently straighten it out and have good sex. The erection pain has gone since I started taking Trental.

Week 13- Still has curve of about 30-40 degrees and I am still gently straightening out before having sex. Just starting to use VED device in addition to oral treatments. Ran out of Trental and am waiting for next shipment to arrive. I hope that a short lapse in taking Trental won't have any negitive effects. Basically at this stage I'm no better.....but certainly no worse.

Week 15- Have been using the VED for 2 weeks now. 1st week just getting used to the feel and workings of the device. 2nd week started the 26week program. Penis looks and feels very healthy after using the VED. I'm lucky that my girlfriend thinks the bend gives my dick character. She is the one I had the initial accident with. I personally don't really care about the bend too much while I'm with her. I just want to fix anything that is broken with my body.

Week 17- On week 4 of the 26wk program. Spending about 10 minutes a session ( 5 min warming up with the VED and 5 min doing the 10 cycles). I don't want to speak too soon....but already I'm seeing some improvement. My bend has turned into more of a curve (much more attractive). I would guess it is more like 25 degrees now...and sometimes it is almost straight.

I will continue taking the Vitamin E, L-Carnitine and Trental for the next few months and hope that it will not get worse. I feel blessed that I managed to fine some great information on the Internet soon after my injury and maybe I have a fighting chance that it doesn't get worse since I started taking the above oral medication almost immediately.

I am 41 and very healthy/active. I'm going to treat this like a sports injury. If anyone has any other ideas on what I can do..please let me know.

[cowboyfood]

... If anyone has any other ideas on what I can do..please let me know.

SB,

Trental (Pentox) is a great start, considered by many here as the most effective oral treatment.  Plus, make sure you're using a "full spectrum", natural (not synthetic) form of Vitamin E.

Read the VED thread and seriously consider using a VED as daily therapy.  Old Man, Angus, Tim468, jackp, and Hawk are forum veterans and highly endorse the use of a VED (If I may speak on their behalf). Simply put, this treatment "remolds" scar tissue that may not be as elastic as the "original" cells; thereby preventing or mitigating any further shrinkage and bending, and reversing to some extent (minor or completely) any current "deformity."  Also, the blood flow caused by the VED promotes penile health and has improved users', significantly for many, erectile "quality."

Also, read George999's information on vitamin D3 (capsules).  I believe Acetyl L-Carnitine (ALC) is preferred over (just) L-Carnitine, plus many use L-Arginine and a daily dose of cialis, viagra, or levitra.

CF

[newguy]

SimonBart - Thanks for providing so much detail in your opening post. It seems to me that you probably did experience a fracture but it's not really common knowledge to know to go to ER. Since that time it really does seem like you're trying to get on top of this issue, what with taking Trental and so on. You might want to add L-Arginine to the mix and even Viagra/Cialis/Levitra should your erections not be as strong as they had been previously.

The advice from cowboyfood is sound, and starting VED use so soon after as injury has occured may result in you being able to access a valuable window of opportunity. If the scar is still forming or who knows reducing as part of a natural process and/or use of trental, I think the VED could help you push things in the right direction, so to speak. Being that you are now able to manually gently straighten out of penis, maybe this bodes well for the future of your condition?

Be sure to be very careful with sex over the next few weeks, and if the pain returns, take a break for a while.

[SimonBart]

Thanks newguy & cowboyfood.
Is this a good VED unit?
http://www.medicalsuppliesshop.com/product.cfm/hurl/impotence-pumps/Soma-correct-manual-impotence-pump.html
It's pricey...buy if it works it will be well worth the cost.

[Old Man]

SimonBart:

Welcome to the forum. The VED described in the link you gave is a very good quality medical grade VED. As far as I know it does require a prescription to purchase. However, there is another VED made by the same company that makes the SomaCorrect unit. It is called the Vitality OTC three cylinder manual model VED and does not require a prescription to purchase. The cost is about $240.00 more or less based on the current pricing. It is available by phone or on line from this company:  www.fitzz.com  

If your order the Vitality VED, mention the word TEAM to the sales rep or in your online order and the company will give you a discount.  A lot of guys on the forum have purchase this model and had good results with its use.

I have one and it gives me great service for both ED and Peyronies Disease. Be glad to assist you in any way if your decide to go with the VED therapy, so feel free to let me know, etc.

Old Man

[cowboyfood]

General question for all, especially the veterans (you know who you are):

I've got a "dent", and I believe many others have too.

From what I understand, the dent is a result of the tunica part not "expanding" to its original shape.  And, the limited expansion is caused by scar tissue.

First, anyone let me know if what I just stated (above) sounds correct.

And secondly, the scar tissue is "part" of the tunica, correct?

Assuming my basic understanding is correct, then does the scar tissue (the dent) affect any other "workings" of the penis?

As far as "my" condition is concerned.  My "dent does not seem to affect any "workings."  The dent visually "presents" itself when I'm partially erect and the dent is most visually noticeable when I'm partially erect.

However, the dent becomes much less visually noticeable when I'm fully erect.  And, I can "feel" the dent with my fingers when I'm fully erect.

Also, I believe that part of my dent feels a little less "deep" when I'm fully erect than before.

I appreciate anyone that can understand my query and enlighten me.

Thanks,

CF

[Skjaldborg]

Hi Cowboyfood,

I am not a veteran, but I have the same problem. I have hourglassing, which is essentially a dent on both sides, just underneath the glans. It seems most apparent during the erection process and is less apparent (but certainly still there) when I have been erect for several minutes. I can feel the dents when erect but I do not feel the scar tissue as much, which I assume gets bunched up and more noticeable only when flaccid. Hourglassing, pain and shortening are my main problems. Curvature is not too bad and erectile function is fine (uncomfortable, but functional). I am worried that my scar tissue extends into the septum between the corpora as it kind of 'feels' like it is. Not sure though.

Unfortunately, I do not know how the scar tissue is attached to the tunica. I look forward to responses from the veterans as well.

Best,

Skjald

[cowboyfood]

Unfortunately, I do not know how the scar tissue is attached to the tunica. I look forward to responses from the veterans as well.

From what I've read on the forum, it's my understanding that "original" tunica cells transformed into "scarred" cells.  If so, then that is what I'm referring to as "part" of the tunica.  But, I may not be correct.

CF

[Tim468]

The tunica itself is scarred.

Tim

[cowboyfood]

The tunica itself is scarred.

Thanks Tim! So, my understanding is correct.

Any others want to comment on my previous post in this section regarding a dent's affect on a penis' "workings?"

CF

[slowandsteady]

Any others want to comment on my previous post in this section regarding a dent's affect on a penis' "workings?"

I see the tunica being pinched doing the same thing as a long balloon (of the type that gets twisted into animal shapes) being pinched -- it changes the shape. It's like putting a piece of tape on the balloon before blowing it up.

s&s

[Dutch]

New kid on the block...

I was 'officially diagnosed' with Peyronies Disease about 8 weeks ago.
At first the urologist told me to 'wait and see' for about half a year.
After I got home I searched this forum and read about Pentox/Trental.
I made a new appointment and told the urologist about what I had read on the forum.
He wasn't aware of Pentox being useful for Peyronies Disease, but was willing to prescribe it for me.
He asked me to get back to him in about 3 months and give him an update on the progress.

The first time I felt something strange was about 5-6 months ago when experiencing pain during an erection.
About 2 months later I felt a little ring shaped 'thing' at the top of my penis.
I was expecting it to go away, but it didn't... :-)
Getting worried, especially after reading about Peyronies Disease I visited our doc.
He wasn't really aware of Peyronies Disease (he's a young man), but after I educated him a little he made an appointment with a urologist.
Well, here I am, 57 years old and not really knowing what to do.
Since about 5 weeks I am taking Trental 400 (three times a day) and I am also taking about 300 mg of Vitamine E a day. I was already using the Vit E since half a year.
I asked the urologist about something like 'Peyronie for dummies', but he didn't have anything worthwile reading.
He was against injections and warned me about a lot of commercial products that wouldn't help.

I would like to know some do's and don't's.
Eg, is it good or bad to have erections, is sex helping or making it worse, any other meds I should be taking? Any other suggestions?
The lump is increasing in size and I am getting very worried.
It feels very threatening to feel something growing in my penis and the urologist is telling me to wait...
I guess most of you know this feeling.


Sorry for ranting... I hope you guys can give me some guidance.
If this needs to be posted elsewhere I'd like the moderators to moved this post to where it belongs.

Dutch

[cowboyfood]

I would like to know some do's and don't's.
Eg, is it good or bad to have erections, is sex helping or making it worse, any other meds I should be taking? Any other suggestions?

Briefly, the issue of whether erections help or hinder the condition has been discussed many times on the forum.  I'd advise you to use the advanced search feature by clicking on the "magnifying glass icon" to the left of the search box and search for posts regarding this issue by members such as Tim468, Hawk, Old Man, George999, jackp, and newguy.

Generally, the consensus here is that erections are very Helpful to the condition.  This believe (which has evidence to support the belief) is one of the theories behind VED treatment.  Although your post did not mention the presence of any bends or indentations, VED usage can still help.  I did not have much if any bend (just indentation) and after about 5-6 months of VED usage, I can still report I have no bend (using the VED in an effort to keep it that way!).

Also, popular and anectdotally effective oral treatments include prescription Viagra/Cialis/Levitra and supplements L-Arginine, ALC, and Vitamin D3.  

Per Vitamin E, many knowledgeable posters promote the all-natural form of Vitamin E as opposed to synthetic.  So, check your label (search George999's posts for a ton of supplement information).

CF

[Skjaldborg]

Hi Dutch,

Welcome to the forums. This is a great place to find information for yourself and to pass on to your physicians. Surprisingly, many general practitioners and urologists do not know about this disease. Your urologist experience was almost identical to mine.

Regarding your questions:
1. Erections are good. They are not hurting you. They are essential to maintaining healthy blood flow to the penis. You didn't mention if you are having any problems getting or maintaining an erection or having regular morning erections "morning wood," as it were. You may ask your doctor about low dose daily Cialis or other drugs like Viagra. You might want to read the highlights from the oral treatments for peyronie's thread:
https://www.peyroniesforum.net/index.php/topic,440.0.html

2. Sex and masturbation are ok as long as you are careful and do not cause pain. No girl on top and be careful of very hard thrusting. If you have severe curvature or bending, you might need to try different positions to prevent pain for yourself and your partner. Be sure that your are fully erect when engaging in intercourse. This helps prevent further injury due to bending. Again, if you are having erectile function issues, talk to a doctor about medication for that.

I don't want to overwhelm you with information so I suggest you read through the highlights sections of each topic. As for doctors and urologists, you should go and see a male sexual health specialist in your area. They have the most experience treating this disease and can provide the best and most up-to-date treatment options ranging from oral treatments to different surgeries based on your situation. Best of luck and feel free to ask questions any time.

Skjaldborg

[newguy]

As I pointed out I've been unlucky enough to have been experiencing some pain for the last ermm 16 months or so. On occasion it feels like it's going, then it comes back. Visually nothing much has changed for me, though where there is pain, there is always a fear that the worst is yet to come. Recently I pointed out that there was a slight indentation on the underside quite near the head of my penis. This particular change appeared to start with a small tender bump, then a slight indentation appeared. However, I'd say that it hasn't particularly changed much, and as such I'm reasonably confident that, that is the extent of the damage to that part of the penis. Hopefully.

A couple of days ago though, I noticed what appears to be a small nodule on the top of my penis, about half way down. What is unusual about this (aside from the fact that i've never had a 'nodule' before) is that the pain has never been in this part of the penis. It kind of caught me by surprise. Aside from the fact that the nodule is there, there aren't any other changes in that area thus far but I don't know if that will change. Obviously I'm not happy about this, but part of me thinks that this ongoing pain is entering a new phase, maybe stabalisation, so if small changes occur I'm not too concrned. Obviously if more and more nodules appear, or there are new curvature changes I will become much more concerned. I really can't know how this is going to develop, but I'm taking so many 'potentially' useful oral supplements, and am now going to start back on the VED, so there really is very little else I can do here.

Part of me wonders whether I should add some of the older treatments, potaba, colchicine etc in a bid to really try everything I can at this time. Thoughts?

[Dutch]

Skjaldborg and CF, thanks very much for your help and info.
I really appreciate that.

Since a couple of weeks I have a slight bend upwards, maybe around 20-30 degrees.
Erections are a bit painful, but the pain seems to dissappear while having sex. I don't know why that is.
I have no dents. The lump is the size of about 1 cm2.
If I feel the lump, does that mean that it has already calcified?
Can you tell me what the purpose is for taking Viagra/Cialis/Levitra and supplements L-Arginine, ALC, and Vitamin D3?
My urologist doesn't seem to vote in favor of a VED. I am glad he was willing to prescribe the Trental.
Should I ask him for the meds mentioned above? In that case I would need to be able to explain the purpose.

Any indications on how long it takes before this situation stabilizes?
The first symptoms started about 5-6 months ago.

Thanks,

Dutch

[Woodman]

I would like to hear from everyone who has experienced long or short term pain with there condition and has consulted with there doctor about it. I would like to hear what there doctors had to say about it and what treatments or medicines they recommended for the pain.

I appreciate all that take the time to respond

Woodman

[Lennyman]

  Been a lurker-Hi everyone. For pain Woodman I apply Cortisone-10 Cooling Relief after shower once a day.  I sit down and put paper towel between penis and testes and let absorb for ten minutes. Then I wipe excess off. I do this 3 days on 1 day off. Otherwise they say the cort thins the tissue.

 This has worked best for me.  This has really been a big help. Also, Thanks again George for the Vit D advice. Your a very smart man.  That has helped alot too. Lenny

[Fred22]

I would like to hear from everyone who has experienced long or short term pain with there condition and has consulted with there doctor about it. I would like to hear what there doctors had to say about it and what treatments or medicines they recommended for the pain.

I appreciate all that take the time to respond

Woodman

Woodman,

I think this post is a good idea and I hope many respond and maybe those of us who experience pain may find something that helps.  I've had pain now for 3 1/2 years, since spring of 2006.  It started out feeling like a UTI then progressed to sometimes excruciating pain for most of 2007.  In the spring of 2008 the pain subsided but did not go away.  I was able to stop the 600 to 1200 mg ibuprofen I'd been taking almost  daily.  A short time after that I developed the curvature and went to a new urologist who would only recommend vitamin E and told me to take ibuprofen or some other OTC pain med.  He would not prescribe pentox.  He also told me that if I was experiencing pain in flaccid penis that I should probably go to a neurologist.  After reading many posts here, I realized that this uro was full of s*^#! and fired him.  I had a new flareup of pain a couple of months ago and even went back on the ibuprofen for a few days.  For the last few days I have noticed a significant decrease in pain, although there is most always at least some minor irritation (inflammation?).  I don't know if this has anything to do with the decrease in pain, but I've started taking 3 grams of taurine a day...one with each meal.  I just hope I'm entering a stable phase where the pain will disappear.  Again, I hope others respond to your post, especially the part about what their doctors prescribed for the pain.  Good luck.

Fred

[bronxng]

greetings,
i've had peyronies for close to five years now. when i first began to notice the symptoms which was a bruise and a constant pain when erect that didn't go away, i went to a local urologist who told me it is peyronie's and to take vitamin e and it would "probably" go away. he made it sound like it was no big deal, no worse then a normal bruise anywhere else on your body so i left his office assured and confident it was nothing and would pass. i was disappointed to find out it not only didn't improve but instead got worse. i believe i've been at the end stage of the disease for years now as as the bend is sharp and I have severe ED (cialis doesn't work and i don't really get erections, EVER, and on the rare occasion i do they are very poor) to accompany it, as well as a good inch of length lost. i have lots of plaque on various parts of my penis. the last time i went to the urologist it was just for the ED and a ultrasound discovered I had poor blood flow. I believe this is a result of the Peyronie's because I was fine before the onset of it and nothing except that has changed.  I decided to give the net a try for info and i came across this board, so much information. wonder what you all think?

[jackp]

bronxng77

Your story some what like mine but I did not have pain with peyronies.

I could go into a long post here but read My History. The link is at the bottom of this post.

It is  not to late. Go to the VED board on this forum. Start getting your penis healthy again with the recommended VED exercise.

After you read My History if you have any questions just let me know.

Jackp

[LWillisjr]

wonder what you all think?

I agree with jackp. If you have had Peyronies Disease for 5 years, and now having trouble achieving an erection....... you need to read jack's story and consider the surgery with the implant.

Les

[bronxng]

jeez....that's pretty severe and certainly something i never imagined having to undergo at my age!  but i'm looking for truth...so there is nothing can help me at this point besides an implant?  what is the role of the ved in this? and where do i get one/do i have to talk to my doctor into it? i'm guessing surgery would result in loss of length so is there anything that can help me gain back the length i have lost since getting this? i've lost around an inch from my erection but the last i checked was over a year ago, hell, what's an erection? haven't had one of those in months, not even in my sleep or when waking up do i get one anymore.  flaccid state is even more pathetic, almost doesn't stretch at all, i have around 4-5 peyronie's plaques at different sites.

[Old Man]

bronxng:

You should follow Jackp's advice about starting the VED therapy. Be sure to read his history if you have not already. He covers a lot of ground in his battle with ED and Peyronies Disease. His successful implant surgery states volumes about what a person can do in a bad situation.

And in addition, there are many other avenues you could pursue in getting some relief. You mentioned that you have had this for about 5 years now and it should have reached a very stable state. You need to start taking corrective action as soon as you can possibly do so.

I am sure that Jackp would highly recommend that you start the VED therapy to at least start your penis back on the road to a more healthy state. His surgeon recommended that he continue its use prior to his surgery and on after to keep his penis in good shape.

A lot of guys on the forum are using the VED with many and varying successes, so read all you can on that board of topics. Others will be able to give you insight on therapy/treatments that have worked for them. Above all, don't delay any longer, get going with something.

Good luck to you and keep on keeping on as the saying goes.

Old Man

[jackp]

bronxng

I did not intend to scare you just be up front what you might face in the future with the condition you describe. I can relate to many of them.

Old Man is correct, the sooner you start the VED protocol the better for your penis. It can help with the curve and restore lost penile size. It took me about 3 months to start showing results but with the encouragement of Old Man I stuck with it. If you read my history you will see that I gained about 3/4" before my surgery. Dr. Milam told me to keep it up until the day before surgery.

On the VED board there is tons of information as to where to buy an OTC VED and the 26 week protocol. Will be glad to answer your questions about VED usage there.

My normal length before peyronies was about 5 1/2", When I started the VED protocol I was about 4". With the VED therapy I went to about 4 3/4" Today I am 5" and have an erection that a teen would envy.

Jackp

[bronxng]

I was not put off by the mention of the implant.  I am interested in truth above all and appreciate the posters who have taken the time to read my posts and comment.  I had assumed the implant would be a possibility since losing the ability to get erections.  Early on it was just the curve but erection ability had not yet been effected until about 1 year ago.  I am just disappointed because I was never warned about this after going from Dr. to Dr. and they just told me not to sweat it.  Reading through some of the posts I wish I had come across this board earlier since it seems a lot of the posters know more about this than some of the Dr's I've seen.

The reason why I made the post is because I'm looking for something, anything, to help regain some size if I'm to get the implant.  I've lost about an inch from my erection but I read when you get an implant the length of the flaccid state stretched is what you're left to work with.  The problem with that is I have so many peyronie's scars (the majority of penis is hard from the plaque) my penis doesn't stretch in the flaccid state at all so I'd be left with like a 2 inch penis and that really kills me since it'd be a loss of over 4 inches in total.  It bothers me knowing how I used to be; I just really hate his ******* condition and what its done.  Worst trial of my life.

[jackp]

bronxng

I would highly recommend you start VED therapy ASAP. There is a ton of information on the VED board of this forum.

Do not let your self get down. There is help. I have sent you a private email with some information so I will not fill up space here.

When you read the email if you have questions do not hesitate to let me know.

Jackp

[bronxng]

thanks jack, i'm in your debt

[cowboyfood]

Skjaldborg,

Thanks for sharing with us your experience w/ Dr. Lue.  It sounds like you have a lot to be thankful for!

You mentioned in that post results from an ultrasound.  I wanted to know if you would share with us the ultrasound process and your thoughts about it.

My uro is performing an ultrasound on me soon, and although I understand the benefits from an ultrasound, I'm still a little apprehensive about submitting to the exam.

Additionally, your condition seems to resemble mine.  But, pain has not been much of an issue, I've only experienced minor discomforts now and then.

CF

[LWillisjr]

cbf,

I had a full color duplex ultrasound 2 years ago with Dr. Levine. Now that I think about it I don't recall ever posting the experience, although many have emailed or PM'd me for the information. I would assume Dr. Lue's office would be a similar process. Maybe Skjaldborg can confirm.

The lab tech took me back to the exam room, and briefly explained the process. They basically perform two ultrasounds. The first is while you are flaccid for a baseline, and then again a second time while you have an erection.

So first thing is you basically strip from the waist down and lay on your back on the exam table. The lab tech gets the machine ready, types in some information about you, and then lubes up the ultrasound wand. The tech will run the machine with one hand and use the wand on you with the other. He asked me to "help assist" by holding the head of my penis still while he did the ultrasound.

Then the lab tech stepped out and an intern came in. The intern gave me a shot in the side of my penis right in the middle. It was a small needle but did sting briefly. The intern left stating that it would take 5-10 minutes for the drug to work, and that he might need to do a second injection if necessary. So while he stepped out I was doing all I could to get my penis to cooperate to avoid the chance of a second injection. The drug kicked in and the erection happened.

The lab tech comes back in, again asks me to "assist" by holding the head of my penis still. And basically the whole ultrasound process was then repeated. Taking measurements  and ultrasound pictures same as before.

Then the lab tech told me he was going to step out, but for me to stimulate myself/masturbate in order to get as hard an erection as possible. But don't climax! They want you to do this so they can take accurate measurements of length, girth, curvature, etc. So the tech steps out, and in a few minutes the intern comes back in with an assistant and a tray of measuring tools. Ruler, protractor, etc. It did seem odd laying there with a full erection and having people measure me up one side and down the other.

After this was completed, they left the room and told me it might take another 15 minutes for the drug to wear off. And they want to keep you there in the room until they know the erection is going away. They said there is "another injection" they can give to counter the erection drug if necessary. So they left and I was trying to think of every "anti erection" thing I could think of. Like imagining embarrassing moments, your mom walking in on you, etc.

Anyway, 10 minutes later the erection subsides, they told me to get dressed and that was it. Would be interesting to see if anyone else has had similar experiences.

Les

[Skjaldborg]

CBF & lwillisjr,

My ultrasound with Dr. Lue was a little different. It was only black and white and only my flaccid penis was examined. At the beginning of the appointment I had expressed apprehension about getting injections to induce erections for the ultrasound. Dr. Shindel (Lue's assistant), said that Lue doesn't do injections and they would just be examining me without an erection. Perhaps this was because I do not currently have erectile problems, knock on wood (heh). Anyway, the process for me was as follows:

1. In exam room with Dr. Shindel and my wife, who was invited in (and happy to be there), Dr. Shindel did the initial exam of my penis and testicles and asked questions.

2. My wife and I were taken to the ultrasound room where I laid down on the exam table, dropped the drawers and they started the exam. Another assistant came in to observe since UCSF is a teaching hospital.

3. Dr. Shindel lubed me up with the jelly stuff, flipped on the machine and said, "Congratulations, it's a boy." Which was a nice way to break the tension and their humor throughout was much appreciated. They sort of stretched me out and went up and down the shaft with the wand. They did not see any calcified tissue, but you could see a band of darker tissue on the screen (like a shadow) where I have the hour glassing. Dr. Shindel explained a bit more about the disease and saved several frames to show Dr. Lue before turning off the machine. The exam was not painful at all.

4. Dr. Lue came in, performed a further palpation exam and looked at the saved ultrasound read out. He also answered some questions I had about staying on pentox.

Your experience may vary, but I think even the plain black and white ultrasound is helpful to see where the plaque is actually located. I had thought that I had it everywhere and they showed that it was fairly limited and that the pentox was working (prohibiting calcification and further inflammation). I still have the disease, but going to one of the best doctors meant I could quit worrying about what "could be" and start focusing on "what is." It will give you some peace of mind knowing what you're actually dealing with.

Best of luck and keep fighting,

Skjald

Also, if this post needs to be moved to a new area, that's fine.

[George999]

My experience in Dr Lue's office was similar.  And I was really happy with the way Dr Lue's office treats Peyronie's patients.  Personally, I prefer the less invasive exam.  But I have to admit, I would put up with a lot in order to get Pentox.  At this point I have been on Pentox since July 2008.  After starting the Pentox, I had some minor progression early on in terms of deformity.  I have had zero flareups in terms of painful inflammation since starting the Pentox.  And lately the degree of curvature has actually seemed to be gradually improving.  I am extremely happy with Pentox and look forward to staying on it as  long as possible since I believe it has stopped my Peyronie's from progressing.  And I simply don't believe the old theory that Peyronie's eventually stops progressing on its own.  My experience it that it does stop on its own, but then it suddenly becomes inflamed again and the deformity again increases.  For me,. that means that it never really stabilizes.  But others will say, oh, thats because you reinjured it or something like that.  Whatever.  I really appreciate the protection that Pentox provides.  I have done things while on the Pentox that I would expect might rekindle the Peyronie's (those things happen from time to time).  But so far the Pentox has fully protected me from any re-inflammation.  I am very happy with it for that reason.  Before getting on Pentox I was taking LOTS of supplements.  Pentox is far easier and at the same time more effective.  Along with Pentox I am also managing my serum Vitamin D levels and taking LDN.  - George

[cowboyfood]

Guys,

thank you very much for sharing your experiences.  

Dr. Ritenour in Atlanta (Emory Univ.) is very understanding.  

It is my understanding he wants to perform the ultrasound on me in an erect state, to get a baseline regarding bloodflow, etc.

I suppose risks are present any time you inject a needle into one's penis; but, then again, this reminds me of the question some have presented regarding the "trauma" surgery casuses to a penis.  

CF

[Old Man]

cowboyfood:

Just been reading about the trauma that injections into the penile tissue causes, at least for some guys. Remembering back when I had my verapamil injections (12 in all) they were administered by at least three different uros. Each one had his/her own method of injecting and were wide and varied.

I made better luck with my personal lady uro when she gave me the injections. She made sure that I followed her instructions as to what to do after the injections. She required that I apply quite heavy pressure to the site and hold it for at least 5 or more minutes to preclude any edema or hematoma. Those injections gave me less problems than those given by the other uros.

So, I would strongly suggest to any and all getting penile injections to hold pressure on the injection site for the above explained reason. It worked for me and could work for others. But, I still have my objections to getting penile injections due to the possible effects based on my personal experience and that of others who I have worked with in the ED and Peyronies Disease field.

Old Man  

[LWillisjr]

The injection for the erection is done with a small guage needle. I was not instructed to compress or hold the injection site. Just waited for the drug to do it's thing.

BUT.....   regarding the Verapamil injections. I am in total agreement with Old Man. After each VI I was instructed to lie still on my back and to hold pressure on the injection site. Levine had his own techinique of doing these. He usually makes two injection sites, half of the syringe in one and the other half in the other. The VI's are with a larger guage needle and you can have some minor bleeding aferwards.

[cowboyfood]

Old Man, Lwillisjr...

I appreciate the advice, I'll definitely use it.

But, I may "slow play" this ultrasound (schedule it for February) even though I have a lot of respect for Dr. Ritenour.  He seems to be a pretty pragmatic doctor...

For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.  

Fortunately, to the doc, my case does not appear to require any surgery; at least at this point.

Plus, my erections have been great.  I really believe the  combination of the VED and other oral supplements have caused my great erections.  And, helped me overcome my battle to lift myself out of a depression, which starts the positive cycle of limiting all that adrenaline which kills the erection.

CF

[ComeBacKid]

For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.  

Fortunately, to the doc, my case does not appear to require any surgery; at least at this point.

This is a good doctor!  Seeing as your having good results with the VED and oral supplements I wouldn't change a thing, except adding pentox if you can and your not already on it.  Don't go to anti- depressants, they are SSRI's which kill erections and sex drive, and delay ejaculation cause they mess with the bodies normal chemicals.  Exercising can help boost your mood and sex drive, eating healthy, get sunlight.

Comebackid

[cowboyfood]

cbk,

that's the uro who prescribed me pentox last May...he gave me 6 refills for a 3x daily dosage.  I do run several times per week, for all sorts of reasons including blood flow.

CF

[ComeBacKid]

Cowboyfood,

Sounds like you are on the right track then, the only thing I'd add is that going even longer than 6 months in my opinion is good, the process is slow how pentox works, it takes time, just don't stop taking the drug, take a lot of water to, it will dry out your mouth, this seems to be common.  Don't stop at six months, go 9 or even 12 if possible!

Comebackid

[LWillisjr]

For example, he told me that although he is a surgeon and he enjoys and feels most comfortable performing surgery, in the case of a penis, he prefers to do any surgery after ALL other treatment avenues have been taken.  

cbf,
It is a good point to emphasize. Just because Dr.s like Levine, Milam, and Lue are recommended for surgery, I'm sure they would also want to pursue all other options and also only recommend surgery after all other options have been tried. I don't want anyone to have the impression these guys are "surgery happy". I know Dr. Levine will also do surgery as a last resort.

We just have to keep in mind that each person's symptoms and stage of Peyronies Disease is at varying levels. So some may be at a stage "more ready" for surgery than others.

Les

[Skjaldborg]

Good point lwillisjr, Dr. Lue is definitely NOT surgery happy. He, and I'm sure the other doctors mentioned, will push medication (pentox) and thoroughly examine your sexual functioning, lifestyle and other health factors before even considering surgery. Dr. Lue also gets your partner involved which is a hugely positive element because they have as much at stake as you do. But if you need it and you are ready for it, they are very experienced in the area of surgery.

I would really recommend that anyone with Peyronie's go see a male sexual health specialist urologist. It is worth the wait and the cost. I got a lot of peace of mind from my visit. Obviously, I still have this disease and I will probably always have it to some degree, but Dr. Lue and his assistants were able to show that the pentox is working, gave me some great advice and let me know that if it gets worse, I still have options.

On a completely unrelated note, I just finished a 10K Thanksgiving run and I beat my last year's time by 4 minutes. Last year I didn't have Peyronie's. I'm getting stronger. This disease will not hold me back.

-Skjald

[jackp]

Les

To get an appointment with Dr. Milam you have to send a copy of your medical records for review first.

I got around this a little bit by faxing my urological history and the name of the local doctor that referred me. About 10 days later I got an appointment card with the usual paperwork. Then his nurse called me and after talking to her I faxed up my urological records and cardiac clearance from my heart doctor (25 pages). While we were on the phone she confirmed my consultation date and then set surgery for 2 weeks later.

If you get an appointment at Vanderbilt you will be sent a card from Todd Doran PA-C. You will see Todd first and then a few minutes later Dr. Milam.

I am now 13 months post op and it feels great to be Normal again.

Jackp

[Woodman]

I wanted to ask you guys who have experianced shinkage from Peyronies Disease your experiance. Did it just come on then come to a stopping point quickly or do you noticed it getting worse slowly. I notice after 18 to 19 months I started to shrink. I ve loss as of today a little more then a half an inch in length and some girth. I ve now had Peyronies Disease for about 30 months.

Thanks

Woodman

[skunkworks]

I think the loss of erection size is 100% due to lack of frequent erections.

It is a truth of male function that the more erections you have the more you will get. This may be one of the reasons VED works so well for people.

I personally take it a little further and after using the VED, keep an erection for around 30-45 min. Since starting to do this, I have noticed a huge increase in erection frequency and function.

That is my own personal experience though, not a medical opinion.

[why]

Hi to all.  This is an update on my situation.  Its been three months since the onset of Peyronie's.  Sept 15, which is a date that i will probably remember always.  I woke up in the middle of the night with a painful erection and was shocked to see my penis with an unnatural bend.   I have spent countless hours on the internet looking for helpful (and hopeful) advice.  I immediatley began applying some of the treatments I read about:  Vit E, Vit C, L-Arginine, L-Carnitine, MSM, DMSO with Vit E applied twice daily, heat therapy twice daily and Ibuprofen.  Last month I began taking Pentox.  The initial pain has gone but the bend has gotten worse.  My sex life has ended.  Intercourse is difficult and uncomfortable.   Emotionally this is very difficult.  You don't realize how much of your ego and self-esteem is centered around your penis until this happens.  It is easy to get discouraged.  The experiences of the members of this forum has been a great support.  I wish you all the best of luck.

[Old Man]

why:

You did not state that you were using or considering using VED or traction therapy. These have helped a number of guys on the forum. So, I would encourage you to consider using either of these to at least try to help with your condition.

The VED therapy has been the only solution for my serious Peyronies Disease problem over the past 56 years I have had it. Many treatments/therapies were tried before starting the VED therapy back in 1995. It took about a year to get rid of my problems, but it did and they have not come back during that time.

Again, I would say that you should consider using some mechanical therapy as well as the oral therapy. You need to explore all avenues that are open for you with this horrible mess called Peyronies Disease. We are all here to help each other, so feel free to ask any and all questions you might have for the forum.

Old Man