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Author Topic: Progression of Peyronie's Disease  (Read 328444 times)

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Hawk

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Re: AJB
« Reply #400 on: July 13, 2007, 09:14:22 AM »

Welcome to the forum AJB.

I concur with Liam's comments.  Hopefully they were all clear except the Gulligan comment.  Hopefully Australia was spared that TV series.

While there are many other things that may help, one that I would add to Liam's recommendations is Acetyl L-Carnitine and maybe a broad spectrum vit E.  I add vit E only because some others seem to think it is effective.

Hawk
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George999

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Re: Pentox and Dietary Inflammation Issues ...
« Reply #401 on: July 13, 2007, 01:25:41 PM »

Welcome ajb!  How could I ever hope to improve on the advice you received from Liam and Hawk?  Well that would not be easy, but I am going to try to expand on it a bit.

PENTOXIFYLLINE

First of all, the next time you see a urologist, you need to have a better understanding yourself of Peyronies and the issues involved.  Obviously you are working in that direction or you wouldn't be here.  I can not tell you how much it will help you if you have all of your ducks lined up when you see the doc the next time.

1)  Be ready to "drop names" when you suggest Pentoxifylline.  Start with Dr. Tom Lue from University of California San Franciso Medical Center, a noted expert on Peyronies http://urology.ucsf.edu/faculty/facLue_Interest.html.  Dr. Lue has done research on Pentoxifylline and found it to be useful in the treatment of Peyronies http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html .  Other noted doctors have prescribed Pentoxifylline as well and you can find some of their names listed on this forum.  Don't be afraid to provide contact information for your doctor for one or more of these experts.

2)  Be ready to inform your doctor that Pentoxifylline has been used effectively against other forms of fibrosis, yet another indicator that it might be helpful against Peyronies http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17395040&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum,
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17217216&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum,
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16236376&ordinalpos=18&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum.
Don't be afraid to print some of this out to show to your doctor.

3)  Be ready to inform your doctor that Pentoxifylline is a long established generic drug with a good safety record and is very affordable, making it appropriate for long term use to treat a condition like Peyronies.

4)  Understand that the one most promising drug for treating Peyronies IS Pentoxifylline.  Viagra has been shown to be helpful, but it is a very expensive patent drug.  But the good news about Viagra is that many people are able to get much of the same benefit from a common herb, "Horny Goat Weed", and in fact there are people on this forum who are using this combination.  The other component mentioned was Arginine.  Arginine is also availabe as an Amino Acid supplement without a prescription in most parts of the world.  The best Arginine formulation I have found, hands down, is SAN VasoFlow http://www.sann.net/vasoflow.html.  Its expensive, but I have found it to be worth the money, and you won't have to take as much of it to get an equivalent effect.

5)  I would definitely consider taking a good Full Spectrum formulation of Vitamin E (like GNC's Isomer E for example) along with the above.  You should discuss the proper dosage of Vitamin E with your urologist.

DIET AND INFLAMMATION

One of the things you really want to attack is inflammation.  This is what is causing the pain.  There are key dietary triggers for inflammation that you need to be aware of.  These are FATS and OILS.  Fats and oils can be either inflammatory or anti-inflammatory.  The best anti-inflammatory fats are derived from Fish.  The most inflammatory fats are derived from red meats like Beef.  Other white meat like Fowl is in between.  Therefore a diet high in Fish and low in red meat like Beef is helpful in reducing inflammation.  A similar situation exists with oils.  Olive Oil is very anti-inflammatory.  Corn Oil is very inflammatory.  Other oils lie somewhere in between.  So a diet high in Olive Oil and low in Corn Oil will be helpful in reducing inflammation.

- George

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ajb

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Re: Progression of Peyronie's Disease
« Reply #402 on: July 15, 2007, 02:11:54 AM »

Liam, Hawk and George

Thank you for your advise and prompt replies. 

I think that I will have to try and convince my GP to give me Tental and Viagra, my Uros saw me once or twice and told me not to come back. They never discussed treatments or anything, just Vit E. 

In Melbourne, there are not that many urologists, and the chances of finding one who has interest with peyronies is unlikely. 

Liam - I have seen this mentioned a few times but I am still unsure as to what NSAIDS are.  Can you point me in the right direction?

Hawk - Unfortunately we were not spared from Gilligan or his antics, also I think we had a cartoon version as well *shiver*.  I saw that you have mentioned L-carnintine, is that a powder, liquid or tablet? and what is the recommended dosage?  I have no experience with these types of products.  Any additional info is appreciated. 

George - thanks for the tip re: horny goat weed and Vaso flow, i will look in to these further.

Thank you all again

AJB
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Liam

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Re: NSAIDS
« Reply #403 on: July 15, 2007, 08:21:25 AM »

Non Steroidal Anti Inflammatory Drugs.

http://en.wikipedia.org/wiki/NSAID

If your doctor tells you not to come back to see him, that is probably good advice.  Go find another one.  ;)  Sydney is a big city.  They must have some good urologist.  It is about 850km from you.  Thats about the distance from Mobile, LA (lower Alabama) to the Mouse (the one with a theme park in Florida).  Try contacting:


The School of Biomedical Sciences, Faculty of Health Sciences, The University of Sydney, P.O. Box 170, East Street, Lidcombe, NSW, 1825

St. Vincents Clinic, Department of Urology, Syndey, Australia


University of New South Wales, Australia



These would be the places I would start.


Good Luck,

Liam

BTW, My doc says come back any time you need.  We are always happy to see you..........




And, oh yes, bring money when you come.







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Barkstalk

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How late can i treat peyronie's?
« Reply #404 on: July 15, 2007, 03:51:55 PM »

I'm 20 years old and have had peyronie's, i believe, for 7 or 8 years now (not exactly sure when it started).  I never treated it because I did not know what it was.  Is there anything I can still do to treat it or is it too late for me to do anything?  I started about two weeks ago taking Vit E, C, PABA, MSM, Bromelain, Quercetin, and Omega-3, but I feel it's a bit late to start with oral supplements.   Thacker's maybe?

My peyronie's isn't too bad, a slight bend to the left and 10 or 15 degree bend up when erect, although i believe the bend up was partly or totally natural.  In fact, it seems to be more bent when I am semi-hard than completely hard (weird right?).  I have what seems to be a long, hroizontal plaque at the top of my penis below the head, and experience no pain when having erections.  I just wish it was more straight so I could have a pecker like everyone else my age.

Thanks for any help.

Barkstalk
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Liam

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Re: Barksdale
« Reply #405 on: July 15, 2007, 08:52:58 PM »

Have you been diagnosed by a urologist?  If you had this since 12 or 13, it is probably a congenital curve.  That means it is a different cause for the bend.  Check with your urologist.  Make sure to tell him the age of onset.

This is one example of a condition causing congenital curve. 

http://en.wikipedia.org/wiki/Chordee

I am NOT saying this is what you have.  There are several conditions that cause curves.  I dug this one out first, thats all.  Just check with a doc before starting self treatment.
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George999

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Re: Progression of Peyronie's Disease
« Reply #406 on: July 15, 2007, 10:17:14 PM »

barkstalk,  I agree completely with Liam.  Self diagnosis is NOT the way to go.  You need to get checked out by a good urologist who can make an objective diagnosis.  Without that, you are swatting at the wind.  If it does turn out to be Peyronies, it is NEVER too late to start dealing with it, but making it better will take a lot of determination and discipline and will take a long time.  But you do need to find out for sure if that is what it is first.   - George
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Hawk

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Re: Barkstalk
« Reply #407 on: July 15, 2007, 10:23:44 PM »

Barkstalk,

Welcome to the PDS forum.  I have little to add to Liam's response except to address one of your points.  You said
I just wish it was more straight so I could have a pecker like everyone else my age.

That is a bit like saying I wish I had an ear like everyone else.  I am not suggesting that your penis is not significantly deformed since I have no way of knowing.  From your description however it seems to be pain-free, capable of erection, and fully functional.  If your condition is stable and not progressive, see a urologist to get a medical opinion and then enjoy life and revel in the fact that there is no standard penis.  There is no official penis judge that can say what constitutes a perfect penis.  If there was, who knows, you might win the blue ribbon.
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percival

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Re: NHS DIRECT
« Reply #408 on: July 22, 2007, 06:43:58 PM »

Britain's NHS website says of the disease: "in most cases the condition will eventually disappear without treatment." (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875)

Cooperman
The NHS Direct page (http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=875) has now been altered and the statement claiming "in most cases the condition will eventually disappear without treatment" no longer appears.
I assume they received a number of complaints from this forum following your highlighting the error. They did not reply to my complaint, but the main thing is that they have corrected the web page.
Regards,
Percival


Cooperman quote added by the forum administrator
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Hawk

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Re: Britan NHS Page Corrected
« Reply #409 on: July 22, 2007, 07:00:20 PM »

Score one for the Peyronies Disease Community. 

Thanks to Cooperman and all that contacted the NHS!  This is no small thing and it is only a glimmer of the impact we can make in the area of education and awareness.

Hawk
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Liam

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Re: NHS
« Reply #410 on: July 22, 2007, 08:15:45 PM »

Bully! Bully!  Bang Up job!   ;D ;D ;D
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Liam

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Re: I'm Curious, George
« Reply #411 on: August 14, 2007, 09:28:29 PM »

...By pointedly dealing with that issue, I saw an immediate reversal of that resurgence and a very marked retreat in the plaques to almost nothing.  The daily ebb and flow that I have observed also fits this pattern.  The plaques seem more pronounced in the evening and virtually gone in the morning.

Does the degree of curve vary any with plaque size?  How about pain?

Liam
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Hawk

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Re: I'm Curious, George
« Reply #412 on: August 14, 2007, 10:45:11 PM »

George,

I am baffled by your change in plaque within a matter of hours.  Plaque as I understand it is scar tissue.  for it to actually change requires tissue replacement which is a slow remolding process.  The cellular composition of plaque could not possibly change in anything approaching this rate.

Do you think, or did you mean that it simply felt different because of degree of blood flow or erection?
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George999

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Re: I'm Curious, George
« Reply #413 on: August 15, 2007, 10:51:03 AM »

Hawk, I am just describing what I am observing.  I have two areas of plaque.  One area has always been much more stable.  It is the area that seemed to respond to the Camphor.  It is really reduced at this point and stays that way.  The other area has been much more dynamic.  To be honest with you, I don't even know for sure that it is truly plaque.  Perhaps it is just Peyronies related inflammation.  In any case I can note pronounced changes in it through the day and it got very "large" during the time I increased my sugar intake.  Reducing the sugar intake reduced the size of these anomalies.  So I myself really don't know what is going on here, but in any case, I believe that the less I can "feel", the better and I really want to pursue a course where, if possible, all of this stuff will just disappear and at that point I won't really care what it was!  - George
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Tim468

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Re: I'm Curious, George
« Reply #414 on: August 15, 2007, 11:40:29 AM »

George, you seem to be describing "induration" (remember that the older name for Peyronie's is "Induratio Penis Plastica (IPP)" or "penile induration" ).

Induration is defined as a firm swelling that feels fibrous or dense - it literally means the process of "being hardened".

So, I think that induration that comes and goes is certainly not calcific, and probably not "fibrous" meaning characterized by (lots of) fibrotic dense collagenous tissue, but is more likely abnormal tissue (still probably fibrotic) that has some vasculariztion that allows swelling and shrinking of soft tissue. It seems by your history that it is almost certainly inflammatory.


Tim
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George999

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Re: I'm Curious, George
« Reply #415 on: August 15, 2007, 01:15:12 PM »

Tim, I suspect you are probably absolutely right on this point.  And it makes me wonder how many "plaques" are simply not palpable at all, but are only detectable by the inflammation that accompanies them.  In any case, "plaque" definitions aside, I still maintain that any approach that effectively extinguishes ANY penile anomalies is of value.  Inflammation, induration, plaque, whatever, if we can get rid of it, we should definitely move in that direction, because that is the direction that will lead us to the elimination of the fibrous tissue itself which actually owes its existence to an ongoing inflammatory process.  - George
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George999

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Re: I'm Curious, George
« Reply #416 on: August 15, 2007, 06:20:55 PM »

Quote
The plaques seem more pronounced in the evening and virtually gone in the morning.


George,

Does the degree of curve vary any with plaque size?  How about pain?

Liam

Liam, the radical change I have seen in the palpable anomalies does not affect the degree of curve in any way.  But the point of curve is directly in the area where these anomalies lie.  I have had the anomalies disappear completely at times, leaving absolutely nothing palpable, but the curve is still there.  As for pain, I ain't got no pain bro, lumps and curves but no pain.  My pain after two major occurrences, disappeared a long time ago and has recurred briefly only a few times since.  - George
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smudge

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Re: Progression of Peyronie's Disease
« Reply #417 on: August 22, 2007, 10:05:55 AM »

I have just been diagnosed with Peyronies Disease. I noticed the plaque on shaft of my erect penis for many years,but I didnt know what it was. I thought it was normal. About 6 days after having a coil embolization for a varicose vein on the left testicle, I got an erection and noticed a very slight change in shape on top near middle of shaft. It was so slight I thought I might be imagining it. I saw my urologist who said it was Peyronies Disease. He told me to take 400iu of vitamin E and come back in 3 mos. I am really scared by all I have read on internet. I also sometimes have a painful erection. That has happened occassionaly over the years, I didnt think much about it at the time. Right now there is almost no deformity, but Im scared to death  that this will progress. what are the chances of this happening. What can I do? Im hoping a peyronies physician will read this and reply.
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Liam

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Re: Smudge
« Reply #418 on: August 22, 2007, 06:03:30 PM »

I'm not a Peyronies Disease doc, but I suggest you find one.  If you have had the plaque for several years without deformity that is promising that it may not progress to the point you can't use it.  It is impossible for anyone to say, though.

How old are you and how many years have you had it?  Did you get the plaque as a result of a trauma?  These are important questions to diagnosis.  For example, if you had it since age 10, it is probably congenital or another condition which may not be progressive.
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Re: My Progression
« Reply #419 on: October 25, 2007, 10:07:00 AM »

I believe I have Peyronies Disease since last May,  when I woke up one day and realized that I had a hard lump under the head of my penis.  It goes away sometimes for a while and then re-appears when I have sex or intercorse to much.  It is right under the head of the penis on the lower side.  Is this common or rare.  Most that I have read say it is on the shaft.  Also,  it causes a vein in the head of my penis to become larger than usual...is this because of strained bloodflow?  Normally I can't see it when I am not hard,  but lately it has been there.  Just wanted to know your thoughts.

Thanks

And when i say under the head...i actually mean the lump is technically on the shaft,  but it borders where the head of my penis begins.
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Liam

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Re: Gabon
« Reply #420 on: October 26, 2007, 05:39:19 AM »

Peyronies Disease plaque does not come and go.  Unfortunately it comes and stays.  It could be sometimes you don't notice it or you may have something else going on.  The best thing to do is see a doctor.

Also, I have never heard of the "vein thing" with Peyronies Disease.  There are conditions of blood or lymph vessels causing "hard areas".  Make sure to write down all these symptoms before you see the doc.

Keep us posted.

BTW, is your username like the country in Africa?


Liam
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Re: Progression of Peyronie's Disease
« Reply #421 on: October 28, 2007, 03:31:48 PM »

Yes,  it is like the country,  I served in Peace Corps in Gabon. 

As for it coming and going, sometimes I don't feel it there and it takes awhile after I have an erection to show itself or if I have sex many times,  it stays around or is more noticeable.  As for the vein,  it just looks larger because it runs right beside the hardened area.  I tried to tell my doctor about it but when he looked at the area,  it was not noticable.  I guess I should take a picture to show him?
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Re: Progression of Peyronie's Disease
« Reply #422 on: November 01, 2007, 05:53:23 PM »

I am not sure where to put this email but....four days ago I noticed an indention in my penis.  I thought, what the heck is that.  Looked it up, found your site, checked for the nodes.....today, four days later, I have our favorite disease.  Not much time to accept it.  Had never heard of it and never had a problem.  Now I'm freaked out and don't want to have sex with the women I previously were having sex with almost daily.

The urologist said don't do anything for a few months, take V-E, come back later.  so after reading your advice, i made an appointment with a real Peyronies Disease doctor, but it's three months from now.

any advice for acceptance?  I went out and bought Isomer-E and L-Arginine.  Then ordered larger supplies of the stuff I have read on this site.

Thank you so much for having this site.  It is the one place i can turn to right now!
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Re: Progression of Peyronie's Disease
« Reply #423 on: November 01, 2007, 05:58:39 PM »

You're doing all the right things except stopping sex. It may feel natural to do so, but I would advise talking to your partner, sharing with her your worries, and seeing if she is willing to help you have frequent sex to keep it working! Seriously, without being honest with her, then there is no reason to be with her in the first place (except sex), so if you want to Man Up, talk to her, be honest, and see how it plays out. I predict that A) she will not have noticed it otherwise, B) not worry about it, C) reassure you that you are loved, and D) help you realize that your self-esteem can stay intact even with this problem.

Tim
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Re: Progression of Peyronie's Disease
« Reply #424 on: November 01, 2007, 08:05:39 PM »

hunerdiamons
You are on the right track. Do Not Stop Having Sex. It will not make anything better the penis needs regular use.
Good luck with the Peyronies Dr. and keep an eye out for scar tissue in the copra, if that happens notify your Dr.
My Peyronies started 12 years ago and has developed over the years into severe ED. I've been married for 39 years to the same lady and her response to me was. "I did not marry you for your penis." I bet your sex partner will feel the same.
Good Luck and let us know how you progress.
Jackp
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Re: Hunterdiamon
« Reply #425 on: November 01, 2007, 10:52:38 PM »

Hunterdiamon,

Tim and Jackp gave you great advice.

I would add may be see if you can get your current Urologist or family Dr. to prescribe Pentox which is generic for Trental. This oral medication may be a good first step to stop progression.


Good Luck,
Pal
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What is the length of active phase?
« Reply #426 on: November 19, 2007, 10:00:50 PM »

I have been in the active phase for six months now.   I have had lots of stinging pain in the penis above and below scrotum for four months now.  I have lost four inches in length in the past three weeks.  Three inches in the past seven days alone!!  Only yesterday I began using the traction device. 

My questions are:
 
How long does the "active phase" last?

Will wearing the traction device durring the active phase exaserbate the condition. 

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Tim468

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Re: Progression of Peyronie's Disease
« Reply #427 on: November 19, 2007, 10:11:29 PM »

tunica,

I have never heard of progression that fast. Go to a doctor and get a full evaluation including an injection-caused erection to determine what the true extent of your problem is objectively. It is more likely that you are not getting fully hard. If you are, but are truly shrinking that fast, then why would you do anything OTHER than go to a doctor emergently?

If you are getting fibrotic changes that quickly (hard to imagine that) then you probably need the opinion of some of the worlds experts like Tim Lue in SF. If it is determined that you are developing rapid fibrosis (ie as could happen after a bout of priapism) then you need to get on the right medications.

Tim
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tunica

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Re: Progression of Peyronie's Disease
« Reply #428 on: November 19, 2007, 10:38:46 PM »

My Doc is Levine in Chicago.  I saw him six months ago and he stretched out my penis and took a measurment.  He commented " you have a lot of stretch, a lot of men have none."  The pain got worse, all in the tunica.  He ran lots of blood tests, I even took a MRI because my only symptom was pain, no shrinkage or e.d.

Then BAM! three weeks ago the shrinkage started.  Like I said last week I lost three inches.  After all the pain now the damage surfaces. 

I forgot to ask Levine what is the time frame for the active phase?  Does anyone here know?
Thanks for your response Tim468.

...
<<<I have been in the active phase for six months now.   I have had lots of stinging pain in the penis above and below scrotum for four months now.  I have lost four inches in length in the past three weeks.  Three inches in the past seven days alone!!  Only yesterday I began using the traction device. 

My questions are:
 
How long does the "active phase" last?

Will wearing the traction device durring the active phase exaserbate the condition.>>> 
 
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jackp

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Re: Progression of Peyronie's Disease
« Reply #429 on: November 19, 2007, 10:55:04 PM »

tunica
If you are having shrinkage that fast get to a Dr. ASAP. I would say you have an emergency. Shrinkage usually takes months or years.
Peyronies active phase is usually 12 -18 months.
Jackp
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tunica

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Re: Progression of Peyronie's Disease
« Reply #430 on: November 19, 2007, 11:05:53 PM »

I have seen Levine three times in two months.  He already cleared me of any other possible ailements.  But I will make another apt......

I have had the pain for months, the shrinkage took months to catch-up...

So I have to wait 12-18 months for the shrinkage and pain to stop? 
And does wearing the fast size stretching device durring the active phase
make the problem worse?
...
<<<If you are having shrinkage that fast get to a Dr. ASAP. I would say you have an emergency. Shrinkage usually takes months or years.  Peyronies active phase is usually 12 -18 months.
Jackp>>>
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pal-31

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Re: Progression of Peyronie's Disease
« Reply #431 on: November 20, 2007, 10:22:28 AM »

Tunica,

Peyronies is very unpredictable disease. Having said that, may be all is not really lost since it has been a short time. Also, some of us are on Pentox. Pentox has shown in small studies to stabilize and improve the disease. It remains to be seen if it is the effective treatment we all hope for, but may be you could get you Uro to put you on it for a while to see.

Good Luck,
Pal
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Hawk

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Re: Tunica - Active Phase
« Reply #432 on: November 20, 2007, 11:35:34 AM »

Estimating the duration of the "active phase" of Peyronies Disease is much like asking the general question of the likelyhood a dog will bite.  The question is: Whose dog, under what circumstances, at what stage of his life, bite who.

People throw the 18 month figure around but but the active phase can last from 4 or 5 months to years.  It can reactivate several times in a persons life and there are those here that think Peyronies Disease never totally goes inactive.

The lesson from this is that you cannot grit your teeth and wait this out.  Also, about loss of length, since erections vary greatly in quality (especially when stressing about assessing your penis), the best practice is the stretched flaccid length.  Stretched flaccid length is a consistent gage of real length.
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tunica

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Re: Progression of Peyronie's Disease
« Reply #433 on: November 21, 2007, 04:57:53 PM »

Guys,

Thanks for your responses.  I appreciate it enormously.  About my stretched flacid length it has shrunk 3". 

Levine had me take a MRI to rule out other problems...I just saw on television that (contrast die) used with MRI's can induce fibrosis.  The nunber to call to talk to a atterney is 1800 bad drug.

I recieved the contrast die with the MRI.  Has anyone heard about this die exaserbating P.D.

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Tim468

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Re: Progression of Peyronie's Disease
« Reply #434 on: November 21, 2007, 05:12:15 PM »

I doubt that the fibrosis is related to the MRI. The problem with dye is described below:

"The disease is known as nephrogenic systemic fibrosis or nephrogenic fibrosing dermopathy (NSF/NFD), and appears to only occur in patients with kidney disease who undergo an MRI or MRA where a gadolinium-based dye is used (1).

These dyes, known as “contrast agents,” are commonly injected into patients shortly before they undergo MRI or MRA scans. MRI and MRA scans are frequently used as a non-invasive procedure for doctors to see inside the body to look for many problems, such as tumors, internal organ complications, clogged arteries, brain irregularities, and more.

The FDA (Food and Drug Administration) states in a public health advisory, “Patients with moderate to end-stage kidney disease who receive an MRI or MRA with a gadolinium-based contrast agent may get NSF/NFD, which is debilitating and may cause death (1).”

It does not sound like this describes you. However, it would be wise to avoid such a procedure in the future. You should raise the concern with Dr Levine also.

I will dig a bit into the mechanisms of this problem to see if there is any theoretical way one could imagine Peyronies arising from this agent.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

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Re: Lost 3 inches
« Reply #435 on: November 22, 2007, 11:18:47 AM »

If you lost 3 inches of flaccid length, what did you start with?  Is this half, 3/4 or more of your normal?  Three inches loss is way, way outside the norm.
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Re: Progression of Peyronie's Disease
« Reply #436 on: November 22, 2007, 12:48:30 PM »

Liam
3 inches seems extreme. I've lost around 20% which my research is about average. 3" flaccid loss would have been about 7" flaccid b/4 loss.
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Hawk

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Re: Typical Loss of Length
« Reply #437 on: November 23, 2007, 12:03:02 AM »

Liam
3 inches seems extreme. I've lost around 20% which my research is about average. 3" flaccid loss would have been about 7" flaccid b/4 loss.

Jackp,
I must be missing your point on this post or your math.  3' loss on a 9" penis is a 33% loss.  3" loss on a 12 " penis is a 25% loss which is somewhat within typical range for a loss percentage.  While that may upset the guy experiencing the loss, he would not be likely to get a lot of sympathy. ;)
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Tim468

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Re: Progression of Peyronie's Disease
« Reply #438 on: November 23, 2007, 10:02:51 AM »

I believe that men typically lose some length, and it is not so related to the original length of their penis, but more related in absolute terms. Most guys lose about an inch or so, not "20%". And although I may wish I had started with 12 inches (for ten and a half inches only partly hard sounds - still - pretty good to me), we all know that for any man who loses his erectile function and shape it is a horrible thing. The guy with a big penis will suffer just as much as the guy with the smaller one, IMHO.
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Liam

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Re: Three Inches
« Reply #439 on: November 24, 2007, 01:03:56 PM »

This discussion is the reason I asked the question.   :o Three Inches :o
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Re: Progression of Peyronie's Disease
« Reply #440 on: November 25, 2007, 12:14:15 AM »

Hey guys,

I was lying on Levine's exam table, he stretched my penis out, he commented that at the time I had good stretch length saying many men with p.d. do not stretch at all when their penis is pulled for measurement.  From the base of my pubic bone to my corona the stretch length was 7". 
Now when pulled for measurement my penis barely stretches at all and my length is 4". 

I am really in shock, there is no other way to put it.  I feel something new running the length of my penis especially underneath.  It feels like several tight strings inside, and it does not stretch.  I use the VED and the freakin' traction device and those hurt sooo much.  I feel if i do not wear the traction device the scarring will pull my penis in so tight to my body...which is where it is headed.  I can't stop this disease.  It is scarring so fast and with so much pain. 

I take pentox x 3 daily, cialis ten mg. every other night, vit E 100 i.u. six times a day, arginine x 3 daily and acetel L carnitine 2 x day.  I'm doing everything I'm suppose to do but I am loosing the battle.   I experienced the symptoms of pain for five months and only shrinkage in the last month.  Guys I cry at night.  Why am I experiencing so much pain. 

Thank you gentlemen, you are all I have at this point.
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Tim468

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Re: Progression of Peyronie's Disease
« Reply #441 on: November 25, 2007, 09:26:07 AM »

tunica,

Hang in there. Be sure to take some antiinflamatory medication like Advil on a regular basis. It may not affect the course of the fibrosis (though it may, too), but it will reduce the pain. Also, I find soaking in hot water to make pain feel better and to make stretching easier.

I will pray for you to heal.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

jackp

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Re: Progression of Peyronie's Disease
« Reply #442 on: November 25, 2007, 04:31:43 PM »

Hawk
My math may have been off but that was not my point. Guess I missed it.
In my 20's I had a friend that his claim to fame was his 9" penis. Most of us average guys were getting more than him because a lot of the girls were scared of him.
These post made me think of him after 40 years and he has moved to another area of the country. If he had lost 20 to 25% of 9" he would have been devastated, us average guys with 5.5" with a 20 to 25% loss feel the same.
My point: No matter how much we start out with the loss of penis size it at least troubling.
My saving grace is my wife who is very supportave. Even with Peronies and all the ED problems she has never complained and continues to make sure we both have a satisfying sex life even though penetration is no longer possible.
Guys your wife, GF or other may be more supportave than we give them credit for. Give them a chance and you may be pleasantly supprised.
Jackp

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Hawk

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Re: Progression of Peyronie's Disease
« Reply #443 on: November 25, 2007, 09:48:54 PM »

My point: No matter how much we start out with the loss of penis size it at least troubling.

I guess I missed your point.  I fully agree with you on that point.  I am somewhat in that situation, in that I started with very ample size and am still well within the normal range.  I would have felt just as bad if I had gone from a foot to 8 or 9 inches.  My loss from large to normal could have driven me mad at time if I had let it.

The truth is that for whatever reason, I am not tortured by it any more.  I have somewhat adopted the attitude, "it is what it is" meaning there are some things I can change, and some things I can't.  I can decide to try treatments, and I will.  I cannot however determine the outcome of treatments and I cannot obsess over the outcome.  I have too many things in my life at the moment that I can make a huge difference with to obsess over the one or two things that are beyond my control.
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Re: Percent Loss
« Reply #444 on: November 26, 2007, 05:31:32 AM »

Guys, I was trying to see percent loss.  A man who started with 4 inches and then lost three inches would have lost 75% of his size.  But tunica lost 57%.  This is equivalent to 2.28"  in the man who started with 4". 

If we talk about how many inches loss, the discussion has less meaning than if the discussion is in percent.  (The amount you lost) divided by (the amount you started with) will give this percentage as most of us know. 

Tunica, did you have the same percentage loss to erect length?  Read some of my posts in the traction topic.  I had great improvement in flaccid length.
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Re: Tunica - A Rose by any other Name
« Reply #445 on: November 26, 2007, 08:20:09 AM »

A man who started with 4 inches and then lost three inches would have lost 75% of his size.  But tunica lost 57%.  This is equivalent to 2.28"  in the man who started with 4". 

I quickly read this sentence 3 times to calculate if I was dumb in math of if Liam was developing a new theory on Peyronies Disease progression.  How could a penis shrink by 75% and the tunica shrink by only 57%? I then realized that "tunica" refers to our member by the name of tunica, not the structure of the penis by the same name.

Tunica,

I think I have to insist that you change your member name.  Using terms like proper names of penis structures, or medical names such as peyronies, plaque etc as member names will only cause untold confusion on the forum.  If we got a few such names our posts would began to sound like the classic "Who's on First" comedy skit. It will also confuse forum searches on topics.  Many people that come here have difficulty with the English language without the added confusion such member names can cause. 

If you will kindly pick a new member name and let me know, I will fix any existing posts.  This will not impact your sign-on name or password but only your display name on the forum.

I will be posting a new rule in the "Read this First" area of the forum.
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tunica to Tony...okay?
« Reply #446 on: November 27, 2007, 04:56:07 AM »

Gentlemen,

If Tony is not taken I'm okay with that name.  Sorry for any confusion. 

Guys Levine gave me Mobic as a anti inflammatory for pain.  It still hurts so much. 

The measurement I give is flaccid.  I haven't had a erection in a little over a month.  And that scares me so much.  How can I adjust to not getting erections.  What can I read that will help me adjust.  I have been talking to a councilor.  I am sick of talking to her now.  I want to be well already.

Is there anything Levine can do for me now.  I do have plack beads inside also I have rings of scar circling around and around my tunica.  I have the feeling the progression won't stop until all the healthy tissue is eaten away.
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Old Man

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Re: Progression of Peyronie's Disease
« Reply #447 on: November 27, 2007, 09:32:00 AM »

tunica:

Tony has been taken. You can click on the members tab in the tab bar to locate a name that would be open for you. It lists all the members there.

There is a Tony and a TonyB already listed. You should select a unique name, etc. BTW, when you select your new name, be sure to let Hawk know so that he can change all your previous posts to your new name I.D.

Regards, Old Man
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Re: Progression of Peyronie's Disease
« Reply #448 on: December 03, 2007, 06:57:23 PM »

Gentlemen,
This is not in response to Tunica/Tony, but I could not find better category to voice my concerns, since it does have to do with possible onset, and progression.

I am a 44 year old male who one year ago (Jan. 2007) was diagnosed with Dupuytren's Disease in my left hand.  I have palmar bumps and bands, but no contracture, yet.  There may be a slight bump beginning in my right hand.

August 2007, I discovered a small bump, smaller that a pea, in the middle of the arch of my left foot.  It does not bother me significantly and I have not seen a doctor for it yet but when I do, I believe it will be a diagnosis of Ledderhose Disease, which is a form of Dupuytren's Disease.

Which leads me to your site....  About 2 months ago (early Oct. 2007) I began to notice mild pain in my penis when I had an erection, either when masturbating, or when waking up in the middle of the night with an erection.  Occasionally I am aware of this mild pain during the day when I do not have an erection.  Sometimes I think it is my urethra that hurts, and other times it hurts just a little bit just under the head on the left side.  For the past 2 months I am still able to get a full erection and ejaculation, but I am aware of this mild pain, which has NOT gotten worse.   I keep looking for a nodule or a plaque, but I cannot find one, flaccid or hard.

What is the time frame for the onset of this disease?  Would I know something more after 2 months that I don't know now if I was developing Peyronie's?  Is is possible to have this with no visible plaque, nodule, or curvature after 2 months?  Should my mild pain be getting worse by now if it were Peyronie's? 

Of course I am worried because of the Dupuytren's, Ledderhose connection - I am hoping that I have not hit the trifecta - I don't want it.  Are there stats for men who have all three?  Like what % get all three.

Any insights as to my situation are greatly appreciated

Joe44
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j

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Re: Progression of Peyronie's Disease
« Reply #449 on: December 03, 2007, 08:19:23 PM »

There are no reliable statistics but it may be significant that the first guy to respond to your post (me) has all 3.  It sounds like we're on about the same schedule, but I'm 12 years further down the road.

I've had Dupuytren's surgery in both hands, for multiple contractures; I have a quarter-sized lump under one arch that doesn't bother me; and I have Peyronie's, which began with nocturnal pain and after a few months became a very noticable bend.  The course of this disease is enormously variable, and your case may turn out quite different from mine.

If you're googling on "peyronie's" you'll see a lot of diagrams and illustrations showing a large distinct lump of so-called "plaque" on side or top, causing the bend. These illustrations are exaggerated and simplified; I don't have anything like a lump, just a hardened area down one side; more like a Dupuytren's band, actually.

Bottom line - don't panic. It's unpredictable, it may or may not become serious.  Better treatments are in the works at at 44 you have time to benefit from them.

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