Septal Peyronie's

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mariobros

Hi Guys,

Well to get straight to the point i have a case of peyronie's which i think is somewhat atypical. Instead of a bend or hard lump in the side of my penis i have a tough fibrous thread which runs straight down the middle dorsal part of my penis. It feels like a guitar string under the skin. There is no pain or curvature and for that i am thankful but i wanted to take a proactive approach and not wait for it to get worse. I am currently taking Ubiquinol and Vitamin E with pde-5 inhibitors at night., whilst looking to add Pentox and Acetyl L-Carnitine in the near future.

I believe that my peyronie's was not caused by an injury to the penis but rather is the result of my having taken Propecia (finasteride), a hair loss drug that lowers DHT some years ago. (Started at age 21, took it for a bit over a year, quit, and have had sexual sides ever since, am now 25). Believe me it was the worst decision i have ever made in my life, i hate myself for being so vain and stupid, but what's done is done.

I am hoping for any advice from people who may have dealt with a similar type of issue, i have looked into VEDs but i am not sure if these would be helpful to someone with my type of peyronie's.

Regards, MB

GS

MB,

As long as you don't over pump the pressure, I don't see how a VED could hurt and it will probably help.  But, read as much information as you can absorb before you start using it.  You can save yourself a lot of trouble by being knowledgeable before you start.

GS

newguy

A few men have mentioned propecia. It's typically something that's dismissed, but since you are very young, it's at least worth as acknowledging this to ourselves for future reference. It looks like you're getting together a good regimen of oral treatments.

Mechanical treatments such as VED and traction can be successful with peyronie's disease. I certainly wouldn't dmismiss them on the ground that you think your type is different from others. It's hard to define such things. These treatments don't work for all, but I see no reason why they should be less effective for you, than anyone else. Don't be put off your VED plan. There are lots of kind and patient experienced users of it around here.

MikeSmith0

Yeah, definitely start early with everything... you may be in very early stage Peyronies Disease.  Are you experiencing any shrinkage or ED?  That was my first sign up to a year before the curve.

Propecia is certainly not to be ruled out as a cause.  Google "propecia help forum" and you'll read about a lot of guys who got Peyronies Disease from propecia... That drug is a disaster for some guys.

I actually have a plaque exactly where you do - right over the septum...but it developed and worsened as the curve developed and worsened... so you are lucky for now you have no curve... however, it came on suddenly for me.  If you can take pentox, arginine, l-acetyl carnitine, ubiquinol, and also use a VED (rather than traction in your case I think) - that might prevent Peyronies Disease from developing further - which will be much harder to reverse.   Not sure how you can convince a doc to give you pentox, though it is a fairly benign drug.  Definitely start early though... and get your androgens checked because this may be the underlying cause of all of it.  Check your FREE T - not just T... and make your doc match your free T up to your Free T for YOUR AGE - not the average level.  Try to find a doc who can check SHBG, Estogen, LH, FSH, Prolactin, Total T, and DHT to see what is going on... you might need to take something to reset your system after being on Fin.  The propecia help board is much better w/ this kinda stuff than I am.  

mariobros

Hi guys,

Thanks for the advice, yes i am a member of the propeciahelp forum.

The reason why i wasn't sure about the VED was because i thought maybe they were mostly for the purpose of straightening out a curve, but if you think it would be beneficial even in my early stage peyronie's then i will certainly pursue it. If anyone has a recommendation of a particular model, i would be very appreciative. Am i to understand then that it is the introduction of oxygenated blood along with the "stretching" of the penile fibers to a full erection which is where the benefit lies?

Mike, did you also develop peyronie's in the absence of prior injury?

Yes i am going to see a doctor soon, the first doctor i went to said it was all in my head after hearing my story but i have the name of a doctor who i am certain will take my concerns seriously.

I have read alot of articles on the web saying that Acetyl L-Carnitine should be used in combination with Alpha Lipoic Acid. Does anyone have an opinion on this?

MikeSmith0

Quote from: mariobros on December 17, 2010, 08:44:16 AM
Hi guys,

Thanks for the advice, yes i am a member of the propeciahelp forum.

The reason why i wasn't sure about the VED was because i thought maybe they were mostly for the purpose of straightening out a curve, but if you think it would be beneficial even in my early stage peyronie's then i will certainly pursue it. If anyone has a recommendation of a particular model, i would be very appreciative. Am i to understand then that it is the introduction of oxygenated blood along with the "stretching" of the penile fibers to a full erection which is where the benefit lies?

I have read alot of articles on the web saying that Acetyl L-Carnitine should be used in combination with Alpha Lipoic Acid. Does anyone have an opinion on this?



Fitzz.com sells a VED that people here have used.  I put a link below.  It's not cheap though.  Also, just be aware you have to trim the hair & lubricate the VED every time you use it, clean it every day, etc...it's more high maintenance than traction would be.   The VED works by stretching & delivering blood to the tissue - though how "oxygenated" that blood is has been debated (see  http://prostatecancerblog.net/?p=19 and linked articles & comments)

If you want to oxygenate the penis, you need to have regular erections (most importantly, at night)...but the VED can sort of do it.  One main benefit of the VED is the 360 degrees of stretching.  The traction device also provides stretching (in a more linear way) and has to be worn 4 hrs a day vs. a 30 min session w/ VED.   Since you have no curve, I just thought the VED would be a better option...though you might not really need any device... i mean, you're not trying to correct anything.  You might actually be better off leaving it alone from a physical standpoint so you don't create any problems...and just stick to oral agents... I never heard of a case of a guy w/ plaque but no curve so it's very hard to recommend anything.  Check out both products, prices, which one you want to deal with (if any) and see... here's the VED link.

http://www.vedsystems.com/products/prescription/soma-erect-stf/

mariobros

Yeah perhaps i might give it 6 months with the oral treatments and then re-evaluate my situation.

Has anyone had any success using Superoxide dismutase (SOD) Cream? There is a study here where they evaluated it. The result seem too god to be true to be honest.

Liposomal recombinant human superoxide dismutase for the treatment of Peyronie's disease: a randomized placebo-controlled double-blind prospective clinical study.

LrhSOD treatment resulted in a statistically significant reduction of pain (p=0.017) compared to placebo already after 4 weeks. At week 12 pain was significantly reduced in 89% of patients who all had received 8 weeks of lrhSOD therapy at that time. Response to other disease parameters was assessed at week 12: plaque size was reduced in 47% of patients, as was plaque consistence in 38%. Penile curvature was improved at 5–30 degrees in 23% of patients. The expected spontaneous disease progression rate of up to 40%, as reported by several investigators, was significantly reduced to <10% under lrhSOD therapy, and patients satisfaction was high, also consequent to the lack of therapy-related side effects observed in the present study.

From Wikipedia...

SOD is used in cosmetic products to reduce free radical damage to skin, for example to reduce fibrosis following radiation for breast cancer. Studies of this kind must be regarded as tentative, however, as there were not adequate controls in the study including a lack of randomization, double-blinding, or placebo.[29] Superoxide dismutase is known to reverse fibrosis, perhaps through reversion of myofibroblasts back to fibroblasts.[30]

George999

The major problem with lrhSOD is that it apparently was formulated specifically for this study and is apparently not in commercial production.  Certainly Levine speaks favorably of this treatment even seeming to wish that it was actually available to prescribe, which it pretty obviously isn't.  He also notes that the technique itself holds promise, in that other compounds might work in similar fashion, some perhaps even more effectively.  So it looks like they did this obviously successful study and there has been no follow up from the pharmaceutical industry to make the product available.  Obviously someone must hold the patent rights to it.  In the mean time five years have gone by.  It could well end up just being another missed opportunity.  Fortunately, though, we DO have the oral treatments.  - George

mariobros

Ok, thanks George. That's quite interesting, i wonder if a compounding pharmacist would have the ability to concoct something like this, especially if they were able to get in touch with the original researchers to find out the compounding method.

George999

Quote from: mariobros on December 20, 2010, 05:15:14 AM
Ok, thanks George. That's quite interesting, i wonder if a compounding pharmacist would have the ability to concoct something like this, especially if they were able to get in touch with the original researchers to find out the compounding method.

It might be worth a shot, but remember, it would be a prescription product, meaning that you would have to have a doctor who would be willing to work with you on it and provide you with a prescription for it.  - George

Luciano

Quote from: mariobros on December 20, 2010, 05:15:14 AM
Ok, thanks George. That's quite interesting, i wonder if a compounding pharmacist would have the ability to concoct something like this, especially if they were able to get in touch with the original researchers to find out the compounding method.
Well for once I can say I have all the elements to contribute.  :P
The study was done here in Austria where I live.
Here is the full text of study:
http://www.europeanurology.com/article/S0302-2838%2805%2900256-3/fulltext



A. 2 of the urologists that participated the study are still working. Pflüger is the head of the Urological department of the hospital of Lainz in Vienna. All doctors that are not specialized in Peyronies Disease send you there. Thats the good news.
The bad news is: (I know because I was there also) All they do is give verapamil Iontophoresis. (They only have 2 Physionizers and with all the patients there you get your turn every 2-3 weeks)
The other specialist is now in a clinic, about 20 miles away.


B. My ex-wife (we still are good friends) is a pharmacist in a hospital pharmacy. (she gives me the trental and other stuff for my therapies - so she is aware of my problems)

So what I will do is:

Ask my ex-wife to check the study, and contact the hospital pharmacy of Lainz  and ask them if they remember what they did (if they mixed the stuff). (she is on holiday now abroad, but will be back before easter)

If they didnt mix the stuff, I still can contact Pflüger as he was involved in the study, where they got hold of the stuff.
(but I fear he wont know, because if someone does a study like this, to get it approved they usually add the name of head of the department, because they do the study in their working hours and the boss has to give his ok. he will be willing to do it, if in return he has his name on the study and gets an extra publication in med journals.)

So bottom line, I will do my research, and post in a new thread as soon as I find something. (If I do, I will of course share my findings and will test it on myself immediately)

Luc

PS: I did a little bit of search, and found a few details, so I posted my results here:
https://www.peyroniesforum.net/index.php/topic,1680.0.html
as i dont want to hijack this thread.

MikeSmith0

I wonder why >40% showed decreased plaques but only around 20% showed decreased angle.

George999

Quote from: MikeSmith0 on April 04, 2011, 11:15:13 AM
I wonder why >40% showed decreased plaques but only around 20% showed decreased angle.

Plaques do not cause curvature.  Underlying scar tissue resulting from plaques causes curvature.  The improvement in curvature would indicate that this treatment is attacking scar tissue as well as plaques.  - George

MikeSmith0

Quote from: George999 on April 04, 2011, 11:40:09 AM
Quote from: MikeSmith0 on April 04, 2011, 11:15:13 AM
I wonder why >40% showed decreased plaques but only around 20% showed decreased angle.

Plaques do not cause curvature.  Underlying scar tissue resulting from plaques causes curvature.  The improvement in curvature would indicate that this treatment is attacking scar tissue as well as plaques.  - George

oh... i thought plaques were just the hardened versions of scar tissue?  They inject xiaflex into the plaque - so are they hoping it'll seep into the entire scar then basically?  

What causes narrowing?  Is it scar tissue in the septum or some kind of 360 degree scar tissue...or something else?  Docs are so conflicted on how they explain this...and narrowing has bothered me a lot more than the angle and loss of length.  I thought by dissolving the plaque and scar - it would let the corpora expand back to their old size... but if there's non-hardened scar tissue around the whole tunica in a circle..then im basically out of luck when it comes to reversing narrowing?

George999

Peyronie's plaques are notorious for changing in size, sometimes almost overnight.  They also move and sometimes simply disappear.  My understanding of plaques is that they are simply inflamed tissue like the lump you get when you get a nasty bruise or an inflamed pimple.  True scar tissue on the other hand tends to be stable.  It doesn't grow or shrink rapidly or move around and it almost never disappears.  Some guys get scar tissue with no plaque, other guys seem to get plaque and no scar tissue.  I have had lots of plaque but no bend or hourglass as a result.  I have had bending with scar tissue though.  And you are correct, there IS a lot of disagreement on these issues even among the experts.  I'm just giving my own opinion as to the way I understand it.  Feel free to disagree.  - George

MikeSmith0

Quote from: George999 on April 04, 2011, 09:43:56 PM
And you are correct, there IS a lot of disagreement on these issues even among the experts.  I'm just giving my own opinion as to the way I understand it.  Feel free to disagree.  - George

No disagreement from me... i appreciate your insight as usual.  I am very curious what you think leads to narrowing though, if you have a hypothesis.

George999

I would say scar tissue.  - George

LWillisjr

It is a confusing topic as many (including doctors) interchangeably use plaque and scarring.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

George999


james1947

The topic is old but I want to renew it because:

WORNING!!! - FINASTERIDE

QuoteI believe that my peyronie's was ..... the result of my having taken Propecia (finasteride), a hair loss drug that lowers DHT some years ago. (Started at age 21, took it for a bit over a year, quit, and have had sexual sides ever since, am now 25). Believe me it was the worst decision i have ever made in my life,.....

I was on Finasteride for 6 months before made TUNA for enlarged prostate. New black hair (I never had black hair, my hair was brown to reddish) grow on my almost bold fore head and on my body. It was OK, but what was not OK, it begin my ED, slowly progressed.
I stop taking it after I find by the internet that Finasteride side effect is ED!!! My ED problems regressed slowly after quitting, but never back to my erections before Finasteride

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

goodluck

With respect to the SOD cream, I know there is a SOD topical product made by Biotics.  It is recomended by some functional medacine doctors for Hashimotos thryroiditis.  It is an excellent antioxidant.  It is suppose to reduce the inflamation of the thyroid by eradicating free radicals.  It is applied on the neck or the soles of the feet.  The feet have the largest pores in the body and is an excellent location to absorb topical creams.
From what I have read, SOD is not well assimilated if taken orally. Hence the topical approach.


What makes the SOD cream used in the Peyronies tests unique?

Why would it require a Script to get a pharmacy to compuound it?

Interesting info.

james1947

I think George post from December 19, 2010 on this topic give some answers.
Maybe the company has made the trial didn't see big money from manufacturing it.

Also the trial is old from 19 April 2005, Published on line 11 May 2005
http://www.europeanurology.com/article/S0302-2838(05)00256-3/fulltext

Last mentioned by the Internet (google search):
http://deaconesshospital.adam.com/content.aspx?productId=48&pid=48&gid=10331
They are mentioning three additional product names for SOD:
QuoteOrmentein, Orgotein, and Pegorgotein
Maybe can get them ready and without prescription?

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

goodluck

Can you share what this topical cream is or if that may break a forum rule can you PM the info to me.  I would be interested in researching it.
Thanks.
Goodluck

kuaka

I think we would all like to know the name of that cream

james1947

Will add my voice to goodluck and kuaka, but:
MikeH registered at July 03, 2015, 04:00:22 AM, posted at 04:03:16 AM when he was last active so don't expect some answer soon.
It will not break the forum rules if he will post the name of the cream. :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum