Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[Tim468]

TomMarkey,

What always comes up when young men tell us they have Peyronies Disease is to ask: is it the way they always were built? As we get more erections, we start to notice the shape. By 12-13 most guys have learnt to play with themselves and notice the shape. I am assuming that you noticed it changing shape on you a couple of years ago. Nevertheless, you should be very clear on that to be certain that it is not congenital curvature.

I would do all that yo mention first. Why try surgery if you have a chance to try VED or traction first??

Tim

[tommarkey]

Hi Tim, thanks for the answer.

I'm certain that aren't congenital curvature. This starts after a "snap" that occured in my penis, approximately 2 years ago, nobody in my family have this. My urologist said that this is Peyronie's disease, but i'm still a little confused about this. The symptoms are from Peyronies Disease, but recently i read in the "Campbell's Urology" book that exists an acquired curvature that are not Peyronie. I didn't understand exactly, cause the book is in english, but, according to what i understood, the diference between Peyronies Disease and this curvature is that Peyronie's patients have Erectile Disfunction and shortening* of the penis (*what is this?) and the others just have a scar in the tunica albuginea. I think that my problem can be this other, is a possibility... I don't have ED (I just lost a little of rigidity in the penis)...

Well... I want to try these trataments like the traction, but the problem is that here in Brazil urologists don't use trataments that are not approved in AUA (American Urological Association) and SBU (Brazilian Urological Society)... They just try E Vitamin and the surgery and don't believe in medicines like Potaba, Verapamil, Traction, Shock-wave...
I wish I try these trataments, but i wouldn't have medical accompaniment...
At the moment, the most important thing to me is to know if i can have a normal sexual relation, or if this will bother me or my wife someday...

Thanks,
tommarkey

[LWillisjr]

Tommarkey,
Peyronies is not always associated with ED. My understanding is that if your bend is due to scarring or plaque, that this is Peyronie's Disease.  And also... if you have lost a little rigidity in your erection, then some would argue that you do have some mild ED. I believe erectile dysfunction refers to anything less than a "normal" full hard erection. There is a study that states that many Peyronies Disease patients actually started to experience some mild ED, and this is waht made them (us) susceptible to the trauma that caused the Peyronies Disease in the first place. This is why ED and Peyronies Disease are so commonly discussed together.

Do you know what the circumstances were they caused the "snap" you referred too? That also sounds like an indication that some type of trauma was introduced and may have caused your condition.

Statistics show that 70-80% of Peyronies Disease patients have no idea what caused it or are not aware of any direct trauma that may have caused it.

[Tim468]

Tom,

Take your time and get familiar with the site here. If it is tough to understand, work with an online dictionary/translator, and then ask us if you are still confused!

Your definitions of Peyronie's are incorrect. It can have ED, or it can be without ED. Mine started with a slight dent, and no ED at all.

As for whether or not it will be a problem, time will tell - but probably not. Many men with some curvature can have intercourse and do. For some of us, the slightest change in the shape of the penis is noted with horror, but our partners don't even see it (even when we show them)!

So start conservatively. It is OK to try vitamin E, but most of us failed on that. It may be that using a broad spectrum (means a vitamin E with 8 different kinds of vitamin E not just alpha tocopeherol) may be of help. For many of us the VED has helped. I tyink a combination of the VED and arginine and occasional low dose viagra has helped my curve and mild ED. I am still trying to prevent new dents from popping up (popping down??).

Hang in there (means to be patient and to not panic in idiomatic english),

Tim

[George999]

Tom, I think it is important to note that L-Arginine and Vitamin E can work in a synergistic fashion.  Taking L-Arginine can increase the supply of Nitric Oxide in the body due to the fact that the body uses L-Arginine to make Nitric Oxide.  But this can also increase the production of damaging free radicals.  Gamma Tocopherol, a component of Vitamin E is able to quench and eliminate those specific free radicals.  My favorite L-Arginine product for this purpose is VasoFlow made by SANN.  I really like this product because it features a time release delivery system which gradually delivers the Arginine AND several cofactors designed to make the Arginine more effective in generating Nitric Oxide.  As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George  

[tommarkey]

Thanks all of you... I will answer one of each time, it's easilly to me

Hi, lwillisjr thank you to.

Yes, i read this in all the places of the net, that Peyronies Disease is associated with a variable degree of ED... I just read in the book that the diference that Peyronies Disease and other acquired curvatures is the ED and the shortening of the penis... If someone wants, i can post what is writted in this book about diference between the two, is not so long.
Yes, i remember the circumstances.... I was sleeping and dreaming... I had a nocturnal erection and unconsciously i pushed my penis a little brusquely to down, when i listened the "snap"... In the way that i remember, i don't have pain or swelling of the penis... I just don't remember if i lost the erection, cause i was sleeping... Since this day i have curvature in the penis... In the begin, i had painful erections, but this finished in some time and now i just have the curvature...
I read something about "subclinical fracture of the penis" that also leads to curvature and scar... In the truth, according to the book, exists 3 cases that leads to curvature of the penis.... They are "Fracture of the penis", "Subclinical fracture of the penis" and "Peyronie's Disease"... I think that the second can has happened with me, the symptons are the same from Peyronies Disease... But i don't know...

Thankfull,
Tommarkey

[tommarkey]

Tim,

Yes, this site is wonderful, i was looking for a forum like this have much time!
yes, i know just so so english, so i need the help from a translator, I'm using AltaVista Babel Fish.

I think that what i posted is incorrect to.... i don't know, i read this in a english book of medicine that i have, maybe i don't understood correctly, it is so difficult...
You "took of one weight of my head"... If the intercourse still can be possible, the greater problem to me is minor now... thanks

I have also tryied E Vitamin, but not this broad spectrum.... I will look for this in the drugstore
These others that you used is with medical accompaniment? I think that i have to try without, cause nobody of them wants to try, they just want the surgery....I have to find someone that wants to try
These became me hopeful!

Dents? from the mouth?

Thanks, hangs from here!
Tommarkey.

[tommarkey]

Hi George,

I don't read about L-Arginine in the tratament of Peyronies Disease.... Now I'm reading here, is an aminoacid... I think that don't have any problem if i take this prescription for my account, no? (without the doctor) Don't looks me a hard drug...
I did not know about the differences between Alpha and Gamma Tocopherol... I used E Vitamin, but never know this.... I will find a Gamma-Tochoperol high dosage in the drugstore! And also i will look for this Vasoflow SANN.... I don't have any problems with colesterol, to me i think that will not have problems!
I just don't know the dosage... How many you are using?

And now, for all.... What i do with my propolis (propoleum)? Stop and starts these others or continue with these others?

Thank you George,
Tommarkey

[Ptolemy]

I had hernia surgery 5 days ago. Everything went fine but I was shocked to come out of anesthesia with a catheter up my penis. I wasn't told this would happen, I've never had one before and didn't like the idea of an army of surgeons trying to thread a tube up my Peyronies penis without knowing about the Peyronies.

I have bruising right on the pubic/lower stomach area. There were 3 incisions but the bruising is not around the incisions, it looks like it's from some trauma under it all. However, because I was feeling so fine two days following the surgery I cautiously used the VED - I was using the smallest tube that week. After the second day of VED use I had bruising on the low part of the penis, something I've never had with VED use over that past 15 months. So I've discontinue the VED until everything clears up

I have two questions:
1. A catheter can't be good for someone susceptible to Peyronies. Have any here had any experience or concerns on this?
2. How could hernia surgery generate blood that I could be draw up the penis and does anyone think I've done any harm? There is no tenderness, everything feels the same as it always did.

[Old Man]

Ptolemy:

It is not uncommon for a catheter to be used during hernia surgery. My double hernia "patch" with goretex material was done as an out patient surgery, but they still used a catheter. I had some bruising in the general area you are talking about. I told my surgeon about my peyronies disease ahead of time, but they still did the catheter bit. After about 2 hours it was removed, I used a urinal and they sent me home with a 4 inch incision in my left side. No stitches, just space age glue with a large band aid over it. Took about 4 weeks for it to heal well.

Anyway, I strongly urge you to leave off the VED therapy at least until the bruising goes away. You could cause a problem with blood flow if you should pull the blood from the affected area(s). It won't hurt to delay the VED exercises while you heal. Only you can determine how long would be best, so monitor your condition daily until you feel it safe to resume the exercises.

Old Man

[George999]

Tom, Gamma Tocopherol products are available via Internet from iherb.com in Los Angeles California and they do ship to Brazil.  SANN VasoFlow is available from bodybuilding.com in Meridian Idaho and they also ship to Brazil.  Also, in Brazil you should be able to get the Gamma Tocopherol product from  BRAZILL DISTRIBUTION CENT, RUA BUENO BRANDAO 366,171, VILLA NOVA CONC, SAO PAULO, Brazil.  Neither of these items are typically considered "controlled substances" in most countries.  Both companies I have listed above are quite reputable and I have ordered from both on numerous occasions.  As for dosages, I am currently taking one of the Gamma Tocopherol's each day and three of the VasoFlows spaced out through the day.  - George

Hi George,

I don't read about L-Arginine in the tratament of Peyronies Disease.... Now I'm reading here, is an aminoacid... I think that don't have any problem if i take this prescription for my account, no? (without the doctor) Don't looks me a hard drug...
I did not know about the differences between Alpha and Gamma Tocopherol... I used E Vitamin, but never know this.... I will find a Gamma-Tochoperol high dosage in the drugstore! And also i will look for this Vasoflow SANN.... I don't have any problems with colesterol, to me i think that will not have problems!
I just don't know the dosage... How many you are using?

And now, for all.... What i do with my propolis (propoleum)? Stop and starts these others or continue with these others?

Thank you George,
Tommarkey

[Irish05]

I have a quick question.

I have been diagnosed now for about 10 months. I don't have pain during sex but seem to have a good bit of soreness the day after. I am wondering if that is normal because from the research I have done people seem to have pain during sex. My doctor diagnosed me with Peyronies, but sometimes I wonder if that is correct. I have never done anything traumatic to my penis. I do have quite a "dent" in my penis, but it does not bend very much. It seemed to take more of the length rather than bending.

Thanks for any responses.

[AR]

Hi Irish05:
My suggestion is to keep reading posts on this site and line-up another Uro visit to get a "second" opinion.  
Good luck,  AR

[Ptolemy]

........As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George

George, many of the E's with Beta, Delta and Gamma only list the IU of the Alpha Tocopherol. What is the ideal balance among these 4 Tocopherol's?

I've switch to a Solgar Vitamin E 400 IU (x 2 daily) of D-Alpha Tocopherol but there is no amounts listed for the other 3.

[George999]

........As for the Vitamin E, be sure to find a product that supplies large amounts of Gamma Tocopherol.  Most Vitamin E products on the market supply only synthetic Alpha Tocopherol which may even make the free radical problem worse.  One of the side effects of Alpha Tocopherol is that it tends to raise LDL and lower HDL and that is a sign to me that it is doing bad things in the arteries which would not be beneficial in treating Peyronies.  I am currently moving to a Vitamin E product that provides mainly Gamma Tocopherol as I am beginning to question even the "balanced" approach that I have been advocating for some time now.  - George

George, many of the E's with Beta, Delta and Gamma only list the IU of the Alpha Tocopherol. What is the ideal balance among these 4 Tocopherol's?

I've switch to a Solgar Vitamin E 400 IU (x 2 daily) of D-Alpha Tocopherol but there is no amounts listed for the other 3.

I personally believe you need to be getting at least 300mg of Gamma T.  If the product doesn't state the potency, go for one that does.  As of today, I am starting on a completely Gamma T product.  The more I am reading, the more I am becoming convinced that it is Gamma T that is the real beneficial Vitamin E component.  - George

[big dad]

Hello All,  I am new to this post and still trying to figure out the proper way to post messages.  I am a married 40 year old male with two children and an active sex life (to date).  I was just diagnosed by my Urologist with having Peyronies Disease (told nothing he could or would do and i have to just live with it).  3 months back I started having extremely painful erections and then noticed that I had an ~ 45 degree bend in my penis.  My wife and I are a little freaked out by this .  I don't at this point have a large noticeable calcification, just a small (smaller than a BB ) sized hard band on my penis. The pain has mostly subsided and I no longer have painful erections and no noticeable ED.  I had never heard of this dreadful disease and was surprised to learn that it effects 1-5% of men.

I have read that I should actively try to slow/stop the progression of the disease as soon as possible and want to see what the best thing I can be doing at this stage before it becomes worse.  Is if a foregone conclusion that it will get worse over the next year, or is there some hope that it will stay where it is. I have read Pentox, VED, agressive vitamine therapy, aleo, full spectrum VitE etc.. have worked for some to slow/stop/reverse the disease?  

Can you discuss your thoughts on how I should treat this in its early stages, or am I wasting my time and money trying? Is there any credible information on what the pharmaceutical industry has in the pipeline to cure or treat Peyronies disease. I am still in shock about learning about this dreadful disease.  I am very happy to have stumbled onto this website and look forward to contributing if possible.

Sincerely,
Big Dad

[Tim468]

Hi Big Dad,

Welcome. In all modesty, most of us would say that you have come to the right place.

Just like arriving late at a party, it can be awkward and confusing to jump right in to someone else's conversation. But that will still help the most - to ask and post questions. For newcomers there is a newcomers board called the "Newly Diagnosed Highlights" (up at the top of the front page). It has summaries of the gist of what we have discussed here on a variety of topics. In a way it gives you a chance to see what others think about the variety of treatments available.

That there is no one solution that everyone recommends is proof that there is no perfect solution available. I am tying to come up with an algorithm that helps one make choices (in a broad sense only).

First off, you are too fresh out of the gate to be "stable" - it could get worse or better on it's own. But in general, stable and unstable Peyronie's Disease (Peyronies Disease) may respond differently to different treatments. Either sort may benefit from use of the VED. I, like many, have benefited greatly (OK - others have benefited more than me, but I am not quibbling!) from using the VED in a regular fashion. Although we have discussed at length the "How-to" of the VED here, the long and the short of it is that regular stretching may help reduce the angulation. Similarly, traction using a "Penis Enlargement" (PE) device (google "FastSize", but not at work) can do the same thing - though fewer of us here have experience with that. Other ways of PE are not described as helpful, and some (ie jelqing) have been attributed as causative for Peyronies Disease here.

A very stable lesion, without change for a long time, on a penis that cannot be used for sex but which can get hard, would be a good candidate for surgery. IOW, try everything else first. Surgery is not a good idea for someone who is getting additional problems, hence the need to wait to see what evolves with your own situation over time.

Supplements many of us have done include vitamin E using a broad spectrum brand, not just alpha tocopherol (need that gamma and the tocotrienols). Others have used a variety of supplements. Viagra may help increase NO production and help reduce inflammation. Attention to exercise and a low glycemic index diet may help = especially if you have any diabetic tendencies. Diabetes is an independent risk factor for Peyronies Disease.

Pentox is used to inhibit TGF beta. The original authors (by Brant; senior author was Tom Lue of UCSF) suggested it might be most helpful for those with evolving, or unstable lesions that are gradually worsening, and less useful for those with stable or calcified lesions.
http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html

Finally, it might be useful to go to a second urologist to see if he or she would be willing to do a color duplex ultrasound to assess blood flow in the penis and to determine that there is NOT calcification. Also, doing that after an induced erection is a good way to get an objective set of data to compare "before and after" pictures.

Here is to a good "after" for you.

Tim

[j]

Big Dad, it is NOT a foregone conclusion that it will get worse.  Mine has been stable for a couple of years and never got to the point of causing ED, just a bend.

Read up on injectable collagenase (now called Xiaflex) being developed by a company called Auxilium; it's grinding its way through FDA approval but could end up being a usefull treatment for a lot of us.

[Izzy1990]

Some general questions about Peyronie's Disease:

1)  I've read that it can cause "shortening of the penis."  What does this mean?  Is this permanent??  If the condition heals, will the penis return to its regular size?

2) Can Peyronies Disease cause someone to be unable to reach an erection, or at least a full erection?  Again, if the condition heals, will someone who was unable to reach an erection once again be able to have one without any reprecussions?  

Basically, my main question is this: are the effects of Peyronies Disease, particularly concerning penis size and erectile function, permanent??

[tommarkey]

Hi Izzy!

Well... I will try to answer in my experience about this, but i think that others can answer better

1 - The shortening of the penis is caused by the calcium plaque in the penis... This answer is relative... While you have the curvature and the plaque, you will have the shortening of the penis... But Peyronie have a lot of trataments, some of them can reduce the plaque and curvature, others (surgery) can straight the penis by a reduction of the other side or by remove of the plaque (what does not short the penis)

2 - Peyronie's disease in some cases is associated with a variable ED... I have just lost a little of my rigidity, what is low ED... But generally this appear before the progression of the disease, just in rare cases after
We cant know if is permanent... in some cases, ED is associated with the emotional of the patient because the Peyronies Disease, and is not a organic problem... ED also has tratament, and new trataments are coming!

[jackp]

Izzy
I will tell you my case about loss of size and it may be typical of others with Peronies.
Over 12 years ago noticed curve up about 20 degrees. Went to Uro with BPH and asked about the curve. He put me on Vitamin E 400IU three times a day and Potaba. I had plaque just behind the circomsision scar, on the top side.
About 18 months later the curve corrected.
While the plaque was still present I had to have a TURP for the prostate and asked if he could fix the Peronies. No. (Long Story)
Mild ED had already started when the Peronies appeared. Just after the curve corrected Viagra came out but I had already lost 1.25 inches.
ED got worse, Pills were of little help. Had a Color Doppler that showed Venous Leakage. Started shots with PGE1 and then trimix. Did not work.
Had to delay implant surgery until 10/07 because of chest pains and heart stents.
During surgery 10/07 the urethra was punctured and the operation was aborted. Dr. said it was because of corporal fibrosis. Fibrosis was caused by Peronies, ED, Venous Leakage and shots. Mostly shots.
The way I understand it is that when you have ED you do not have night time erections, erections are not as frequent and that leads to fibrosis which also leads to penile shortening.
What am I doing about it. 10/06 when the implant was delayed I asked the Dr what can I do. He gave me a prescription for a VED and I had it fit in his office.
I did all the wrong things. I thought more is better. I pumped as much as I could stand and held it for up to 20 minutes. This caused an abrasion on the side from the head back about 2 inches. Took weeks to heal. After that I only used the VED for sex.
10/07 after the failed implant I found this site. (You can read the story under Surgery for Peronies back in October.) Then Old Man on the VED thread put me on the right path for VED usage. I have gained back from 1/4 to 1/2 inch depending on the day.
Will I ever get back to where I was? No. Can I use what I have left? Yes. My wife has been very supportive. Yes, our sex life has changed but we still have one.
When she first noticed the loss of size she asked "Jack have you lost some size." Of course I told her yes. Then she said to me "Jack I did not marry you for your penis."
At over 65 we make accommodations for each other. We still have a sex life and have fun at it. Was it like it was 40 years ago? No. Love and intercourse are not sex. Sex is not intercourse alone.
With all this said. Will the effects be permanent? Probably to a degree. It is how we change our lives and respond to our spouse that matters. We are not the same as we were when we first married almost 40 years ago. And you know some of that is good. I will be willing to bet that other things besides Peronies has changed. We look at our size as a reflection of who we are. Size does not make a man, it is how we deal with it.
My $0.02
Jackp

[AR]

jackp:
That was a nice post, thank you.

A couple questions if I might:  What is BPH, and TURP?  And isn't plaque and fibrosis the same thing..??      

And I guess while I'm at it: How does one measure length when they have a severe bend..?  Use a cloth tape and follow the bend, or a ruler, straight-out and guesstimate where you'd be..?  (I'm serious.)


AR      

[jackp]

AR
OK
BPH is an enlarged prostate mine started with an infection that is hard to treat see if I can spell it. Benign Prostate Hyperplasia.

TUPR is surgery to reduce the prostate where they go up the penis to the prostate and remove some of it.  

They may be related to Peronies but are related to ED.

When I was a teen we used to measure the underside back as far as we could push to the base of the penis. That is how some had 8" when they relay had about 5.5 to 6 if measured properly. Properly is the top side pushed all the way back to the pubic bone.
Never did measure with the bend. Afterward using the proper method I had lost 1.25 inches. Depending on the bend I would use a cloth tape, measure each side and average the difference. The short side is what you probably will end up with when the plaque is stable.
If I knew then what I know now I would have been doing the VED to help save some size. Old Man has the proper procedure.
Thanks for the comment.
Jackp

[jackp]

AR
One other thought.
Do Not Use Shots for ED. They make the fibrosis in the corpora's worse, and can lead to Peronies.
Jackp

[hornman]

Hello all.  This is my 1st post. I went to see a uro about 3 months ago for penile pain.  He barely examined me and diagnosed an inflammed prostate. He put me on cipro for 8 wks. Nothing got any better.  The cipro is nasty stuff.  After searching the net I diagnosed myself with Peyronies.  My uro agrees.  I have the telltale plaque on both sides at the base of my penise.  Uro told me to take vit E and watch and see. Of course after reading suggestions on this forum I am taking most of the over the counter recommended supplements.  The inflammation is causing me pain constantly, erect or not!  As of now my sex life is ruined.  I noticed that the listed warnings for Viagra  state that you should discuss with your doctor before use if you have Peyronies disease. I have experimented with Viaagra.  Can viagra cause peyronies?

[Old Man]

AR:

TURP is an acronym for Trans Urethral Resection Procedure. This is commonly referred to as the ream job on the inside or where the  urethra is being closed down/squeezed by the BPH. The cutter tool is inserted and it literally cuts away the enlarged flesh and allows the urethra to be opened up again.

Sounds horrible, but it really does not hurt that much. Just mighty uncomfortable when urinating for the first few days. You do have to wear a Foley catheter with the procedure too.

Old Man

PS: Had my annual PSA test today and it was 0.0 which it has been for 13 years now since surgery.

[Iceman]

hornman - see if your uro can prescribe you Pentox!!! - do this asap.

[Kimo]

Hornman, I came down with peyronies after taking my first dose of viagra,,But later realised that viagra didn't cause it,,,I already had an underlying condition,,,,Over the past 10 yrs i have continued using viagra and i really do believe it has helped to straighten things back out...

I too had lots of pain when either erect or flacid...nothing seemd to work,,but one day i got an idea to use a magnet which i found and wore it in my shorts while sleeping,,,I knew imeadiately that something was happening and in 3 days i was pain free,,,i did continue using it for about 3 weeks to make sure the pain did not come back...i have been pain free ever since...NoW that may seem crazy but it worked for me....If you have any question's please feel free to email me at kauaiman005@yahoo.com

Kimo

[AR]

Thanks jackp, and Old Man:

TURP - Ouch! Yes it sounds very painful!  I guess I'm a lucky guy... I only have Peyronies Disease!!  

I don't know what PSA is either, but I'm glad your's is only 0.0 Old Man.

I asked earlier: is plaque and fibrosis the same thing, or are they closely related or what..?

As I reported earlier, I'm fearful that I may've, as jackp put it: ".. thought more was better.." and over did it with my VED a few weeks ago, and hurt myself!  The Mrs and I are planning an intimate encounter for this evening, so, in the middle of our arousing and passionate for-play, I'll say "..excuse me Honey for just a second.." turn on a bright light, get out the ol' protractor and give my woody a quick exam before it wilts, and - hope for the best...    

AR

Welcome Hornman.

[Old Man]

AR:

Glad that you do not know what PSA means! If you do, you know that you have had a digital rectal and a blood test for prostate cancer. However, if you are over 45, you should get your PSA checked at least once every two to three years based on what your first reading comes to as a base line for future tests. (Note: African American men are more likely to have prostate cancer than Caucasian males based on research done by the ACS.)

Now, PSA is an acronym for Prostate Specific Antigen which a person's score is measured from the blood lab work. A score of 0.0 means there is possibly no cancer cells left in my blood stream to spread to other body parts/bone marrow,etc. Since I am 13 years out from a radical prostatectomy, 0.0 means that I am virtually home free from the cancer spreading to other parts of my body.

So, bottom line, do your homework and be on the lookout that you do not get prostate cancer. Do your checkups.

Old Man

[Old Man]

AR:

Forgot to answer your question about plaque and fibrosis. I suppose one could say that they are akin to each other in some way. However, fibrosis means that the tissue has become fibrous in nature and is like string in a ball for want of a better word. Plaque is more of a hardening of the tissues/tunica and is usually flat or similar in nature.

The above is about as simple as I can put it, but others will have a better description of it. Tim works with those terms and I am sure that he can explain it in more detail.

Old Man

[AR]

Thanks for that info Old Man, and congrats on your 0.0!

I have had that blood work but didn't know what it was called.    

AR

PS: just caught your second post - thanks.

[Tim468]

Kimo,

I went and tried that magnet trick. Seemed to work, but I was walking out of Home Depot and got stopped for shoplifting. I had three wrenches, fourteen bolts and two big nuts stuck to my crotch!

Tim

[Kimo]

Tim,,that was good man,i can't quit laughing,,never thought that would happen....

kimo

[Old Man]

Tim:

Next time, when shopping at Home Depot, wear a smaller less powered magnet!!!!

Old Man

[Ptolemy]

I understand from our Glossary "Glossary of Common Terms and Abbreviations Associated with Peyronie's Disease" the meaning of "Fibrosis" and the meaning of "Plaque."

What is the definition of "Corporal Fibrosis" often referenced?

[bodoo2u]

Until recently my plaque/scar was pretty benign. I have been using a VED off and on for a year, and traction for about 6 months. I recently began taking ACL, Carnosine and B12. I'm not sure what's going on, but all of a sudden I can "feel" my plaque. I don't mean with my hand (I could always do that), and now I can feel a sensation in the plaque. It doesn't hurt in a painful sense, but the sensation is ever present, and it feels like it's itching or slightly burning all the time.

What gives? Can anyone tell me what's going on?  

[newguy]

bodoo2u:

Have you recently increased the intensity of your VED + traction routine? If not maybe the addition of ACL or carnosine could explain the changes, though it's not something I've heard of before. It's hard to know whether this is positive (as in working/stretching the plaque) or negative (an injury). You could try laying off those for a week or two and seeing if the feeling goes away.. or doing the same with either the VED or traction. Or maybe a 'wait and see' approach.

[Old Man]

boodoo2u:

I noticed that in your last post that you stated you had used the VED in an off and on basis. From my experience with their usage, it is of utmost importance to do the VED exercises on a daily basis. Doing them on an irregular basis does not lend itself to a constant exercise routine.

VED therapy is not a "quick fix" for Peyronies Disease symptoms. One must decide to start the protocol with a long term schedule in mind. If one uses the 26 week protocol for the three cylinder VED, it must be adhered to on a rigid basis in order to see good results. You might want to consider leaving off the traction for a while and use only the VED on a daily basis for at least a month or two before adding the traction back in to your routine.

Old Man

[bodoo2u]

Old Man and Newguy,

Thanks for the advice. OM, do you have any idea what it is I'm experiencing? Have you heard of it before?

[Old Man]

boodoo2u:

No, I have not heard of any symptoms just like you are talking about. Several have said that they have had all kinds of different sensations going on withing their penises, but no one seems to know what it might be.

Strongly suspect that it might be nerve related though. There are many nerves in the groin area and they control a lot of territory in that area. So, it could be possible that a nerve is being disturbed by the plaque or something similar. Just don't know anything for sure in this area.

Old Man

[Ptolemy]

Yesterday I began feeling a sensation in the plaque. Following my recent hernia surgery I stopped using the VED. When I restarted two weeks ago, I began the protocol anew with two weeks on the small cylinder. I used an "in and out" motion when the vacuum was engaged, not enough where the cylinder and penis skin had movement between them but under the vacuum pressure, the movement helped lengthen the penis in the small tube. I also apply about 4 hours of Traction during the day

Yesterday, when all routines were complete, I could feel a sensation around or in the plaque. Not enough that I would call it pain but enough that it was noticeable. When I used the VED this morning, it aroused a similar feeling so I stopped the in and out action and just used the vacuum. There was no pain when I did that but later today I have the same feeling/sensation.

My approach will be to continue the use of both the VED and Traction but less aggressively using pain as the measurement. Less pain and I will maintain the same level until the sensation is gone, more pain and I will lessen the vacuum and Traction length until the sensation improves or disappears. I am reluctant to discontinue treatment but I will if the "sensation" becomes "pain."

I'll let you know how it goes.

[bodoo2u]

Ptolemy,

Sounds like what I'm experiencing. Is it a burning/itching sensation. I sure hope we haven't overdone it.

Unlike a lot of men here whose curves are upward, mine is to the right and the plaque estends nearly the entire length of my penis, so i have to be careful because any further damage will render me unable to have intercourse. I always said that an upward curve is better than a right or left one, because it appears to be much easier to penetrate.  

[lymeboy]

I have probably had a slow onset Peyronie's disease--that is until one day I have an hourglass bend about 1/3 of the way from the base of the shaft, a bend below the head, and decreased length and girth.  This occured about 2-3 months ago.  I am not currently sexual as it is too painful.  My penis is almost always painful--ranges from a 3-8.  I have to pee often and I feel like I have a generalized inflamation in my pelvis.  I have done some searching and can not tell if this is common or not.  If so what have you done to mitigate the pain.  At times it is quite debilitating.
thanks

[bodoo2u]

It sounds like you need to see a doctor as fast as you can get to one. What you are describing doesn't sound good at all-Bodoo

[George999]

Lymeboy,  With all the problems you are having, you really should consider getting checked out a university medical center with the resources to provide you with more answers.  I think that having this debilitating pain should be setting off some alarm bells somewhere indicating that you need to get a second opinion from someone who really knows what they are doing.  The whole Lyme treatment regimen is under scrutiny right now (Connecticut Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process), but you really need to be examined by a top notch urologist to make sure that you don't have something else going on here.  That is my opinion.  And you need to make sure that they are aware of the Lyme issue AND aware that the whole traditional Lyme treatment regimen is being questioned.  - George

[lymeboy]

Thanks for your responses.  I agree that I need to bump this up a few clicks.  I am usually quite proactive regarding my health care and I am at a loss.  I have been to two urologists and called one of them a couple of weeks ago and was sort of told to wait it out.  I probably need to go to Boston (I live in Maine).  i am open to suggestions if anyone knows a good doc in Bean town.  I long ago know that the traditional medical model of treatment for Lyme disease was bogus and have sought out alternative treatments.

[newguy]

I've read several messages here from those who suddenly (or slowly) developed a curve a few months after an injury. Some of these members appear to have lost anything from under an inch to maybe 3 inches, due to scar tissue not being as stretchy as normal penile tissue. One heartbreaking story I read here involved a man who lost 3 inches in one month. It has been suggests that if they had started using a VED + traction at the early stage, their loses would have been less significant. This of course makes sense, and acting quickly has far more merits than minuses. Sadly many urologists just seem to suggest vitamin e and send patients on their way.

Take this a step further, from a hypothetical point of view, if a person was to use a very gentle stretch on their penis to their erection length (or close), without cutting off bloodflow for extended periods of time (i've seen someone mention 8 hours here), would the scar tissue be more likely to heal in that 'extended position' and hence still be weaker than surrounding tissue, but not impact length in a significant way? Personally, due to my current issue I am still holding off starting on the VED and traction for a week or 2, but for those new members joining, often with a slight or no curve developed, do you think taking such steps could reap rewards, or would be totally foolhardy?

[jackp]

newguy
In my case doing my own "streaching" did not help.
My thoughts as to why the VED works. If used properly it brings fresh blood to the corpora's. By using the pump, hold and release method that Old Man told me about made a lot of difference.
I have no comments on traction as I never tried it, but it seems not to give you the same healing effect as constantly bring in fresh blood several times over the session.  
Can I back that up? Only to tell you that is my opinion and what works for me.
My opinion only. Guys with traction may have a different view.
Jackp

[newguy]

jackp:  Thanks for your input. My musing was more concerning those in very early stages on peronie's without any curve at that time. I am curious to know what would happen in that situation, where it was used in a more constant and gentle precautionary style. Of course as I doubt anyone starts using such methods 'before' a possible curve emerges it's hard to ascertain, but what to others think would happen to the scar tissue/healing process in that situation.

Not related to the above point, but how open to suggest and input have the forums members found urologists? Are many of them at all open to the ideas/meds we present here ? Are any forum members, urologists?