GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[Hawk]

Dahc,

Good link, but I never found Dr. Levine's webcast.  I went to "Official Webcasts" and checked each category.

I did watch an EXCELLENT presentation on testosterone however.

[dahc]

When you activate the link you will be on the Home Page, scroll down and you'll see several topics underlined including Non-Surgical Treatment for Peyronie's Disease. Each topic is a link to a webcast, just click and pick your media player.  

DAHC

[Hawk]

Thanks Dahc.  I was not looking on the home page but going to the "Official Webcasts" page.

There are some great informative webcasts on that site.  I found the Levine webcast good as well as the 2nd  webcast on this page http://webcasts.prous.com/AUA2007/article.asp?AID=83&CID=YY&CLID=2  It is on testosterone replacement, indications, myths, side effects.

[Tim468]

The talk by Levine was pretty good. The Flash Streaming Video of the talk included a short clip regarding injecting the verapamil. He stated that he makes as many as "seven or eight" puncture wounds but as many as "eighty to one hundred passes" into the plaque. That strikes me as much more likely to be like the Leriche technique than simply due to injecting the verapamil.

In the clip it was clear that the penis he was holding had a firm nodular plaque that he could actually grab a hold of and gradually fill with Verapamil. I realize (now) how different my Peyronie's is than that sort of disease, and how little there is that is palpable. I noted that the original Leriche technique article does not think it works as well for non-plaque disease. This makes sense since it the technique consists of multiple stroking motions across the surface of the plaque to leave a lot of tiny partial thickness cuts in the plaque that allow it to stretch out (which is different than multiple puncture wounds). Nevertheless, I wonder how much of the improvement is due to increased stretchiness of the plaque as it gets "Swiss-cheesed" into submission.

Tim

[Hawk]

The clip was interesting.  If you noticed, he made a point of saying the object was to leave the drug in the needle traces as opposed to the objective being to make holes in the plaque, then he showed a demonstration that could led one to think the opposite.  Maybe that is why he stressed it because of the appearance.

[Liam]

The video should be required viewing for all men here.  Good info!!!

GOOD JOB DAHC!!!  

it gets "Swiss-cheesed" into submission

LOL Well said, Tim!  

Hawk and Tim,  I thought the same thing after seeing the injections.  He poking the heck out of that plaque.

[Steve]

Hawk/Liam,

Is there anyway to get a copy of that webcast and place it in our 'Newly Diagnosed' thread?  It looks like a very good starting point for someone who's looking for information on the current state of treatment.

[Hawk]

There are a few issues.

The first step would be that I would not consider using it without Dr. Levine's blessing.

The second is that video sucks up huge amounts of server space with our host as well as transmission band width.  When I get a chance I will have to review the webcast again and see if a transcript along with a short clip on the VI might not be sufficient.  If we could count on it staying on the AUA website, linking to it would be sufficient.

[Steve]

I was strolling through the polls area and noticed a short thread between Hawk and ComeBackKid regarding a PDS 'business card' and/or a letter to Uros...has anything ever developed from this?  I did a search on Business cards and only came up with the hits I'd already seen.

Steve

[Hawk]

Steve,

On the question of developing a business card, or brochure, and contacting doctors, the short answer is no.  We have no one functioning in the position of Director of Awareness and no one to assist in that area.  This was the arm of the PDS undertaking that mission.

In my 2 or 3 years administering the PDS I have found that it is very difficult to find necessary people possessing the things needed to make a success of such campaigns.  The things needed are people with:

1. talent / skills
2. Willingness / interest
3. time
4. commitment

My experience is if one of these things is missing, it is no better than if they are all missing.

As a result, I do what I can and wait for the need people to wonder in to the forum, or for those that are here to experience the necessary change.  We can see from the child board (Angus), and a few other projects, what even one person can do when they possess these 4 commodities.

[Liam]

Amigo said:

I'm new here, but have been lurking for quite awhile and have followed research into this topic for the better part of a decade.  I believe that vitamin E is a very conservative protocol for Peyronies disease and its benefit is not very well supported from what I've seen.  It shouldn't hurt and may possibly help, but I think that long term use would be called for.  I don't think ten days of treatment would accomplish much of anything.  

In the way of a presentation, I'm 34 and have been struggling with this for about a decade, hourglass was initially bad, but then got noticeably better for a number of years.  This summer I've noticed a significant hardening of the plaque and a corresponding increase of curvature to the right as well as increased pain.  

Liam,  I have found your responses to be generally thoughtful, but I do take issue with your advice to this young man not to worry about peyronie's until age 50.  As someone who got nailed with it in his twenties, I can only envy any of you who spent the best years of your sexual lives without having to worry about it, but there are a significant number of us who are hit early and hit hard.  I know we don't fit the typical profile, but  it doesn't negate our existence.

I'd personally advise the new young member to go to a Urologist and seek a professional opinion.  I didn't have a real noticeable plaque at the beginning either, but did have hourglassing.  I think everyone is different.  I also think that anything you can do earlier rather than later is for the best.  I'm finding that calcification is a real bitch and wish I would have attempted more treatment options earlier on.  For now I'm turning back to VED and adding traction as well as taking Pycnogenol and Ginkgo for better erections (I was also taking arginine, but started to have cold sore breakouts - so I dropped it for now).  Good luck to everyone.  You can count on me to post more often now that I'm having to address this head-on again.   Thanks for everyone's input in advance.

Amigo,  

Although in the tail of the curve, I will admit the possibility of Peyronies Disease in the 20's.  Sometimes these maybe injuries, sometimes not.  However the likelihood of contracting Peyronies Disease at age 14 or 15 (as Charlie stated) is very remote.  He also stated a lack of plaque.  Again, not likely Peyronies Disease.

So, my advice for Charlie was intended for him, not a blanket statement on the possibility of contracting Peyronies Disease at any particular age.  You are so correct about seeing a urologist.

Thanks for telling us about your case.  I know someone will read your post and will be able to relate.  I look forward to your future posts

The key is the amount of deformity, Charlie.  I guess it is possible you have a conginital curve.  If it is functional, though, leave well enough alone.

[amigo]

Liam,

I appreciate your reply and hope you didn't take my first post here as any kind of personal attack.  I really have appreciated your numerous posts on the boards and your skeptical (i.e. realistic) sensibility.  It just made me nervous not to have the young man in question at least have things checked out by a professional sooner rather than later.  I remember how hard it was for me to get up the gumption to take a problem that I was initially quite embarrassed by and go see the dick doc  Thanks again for all your comments to date.  I certainly look forward to many more years of your insights.  Unless of course, the heat/traction protocol you're trying turns out to be THE CURE, and we all end up never having to think about any of this again (a guy can dream).  Personally I'm encouraged with my brief (two week) foray into traction... but that's another post for a differnt thread.  Take care... and as always... best of luck to all.  

--amigo

[Liam]

Amigo,

Your point was well taken.  I question almost everything.  I appreciate being questioned myself.  It helps clarify my views, change my views, or something in between.    Any of these are good for intellectual honesty.

Don't hold your breath on the heat/traction being a cure.  It has helped one aspect of the condition for me.  And, BTW, ahem, cough - cough, it's the heat/traction REGIMEN.  Protocol belongs to the VED    

You may refer to it as the "REG"  

I considered the "heat/traction discipline, but that conjures up the thought of B & D.  Given the nature of traction, I decided...uh....NO!  

[amigo]

TO THE MODS:  Is there anyway to have a RESEARCH/ABSTRACTS sticky thread or separate forum where we could collect links to abstracts about supplements/treatments. Individual posters could list their favorite abstracts beneath the primary post and someone could edit that primary post periodically to include links to the newly contributed abstracts.  I guess the goal would be to have one big master list of research links.  I've seen so many abstracts in the various forums on here, but after awhile it does get hard to keep track.  I'm just starting a list of my own favorites, and wondered if there would be interest from others in creating such a master list online.  Personally, I'd envision it with separate headings for Peyronies Research, Erectile Dysfunction, Related Research (Dupuytren's, etc.)  I'm not trying to be lazy... just expedient.  If it has been tried before and didn't work... let me know.  

[MUSICMAN]

As I read the comments on various supplements and mechanical methods to help with our disease it seems that nothing really works.  Some say what they do or use are of help because things are not getting worse. Surgery seems to do the job for some and not others.  With surgery what good is a straight penis with nerve damage where you can't feel anything.  

I hear of heart pumps to help restore damaged hearts. Lots of work has been done for breast cancer. You can get a liver transplant or some hair transplant. Your vision can be corrected by laser. So what is being done for us? Not much as I see it. So I get to live out the rest of my life with a penis with a 90 degree bend. I have been told that my penis is not 100% of my life but this disease has given me a mental anguish that will never stop. With some diseases a person can say I do have some hope of being healed or at least it will end soon.  My son who has MS has a drug he takes. It comes with no guarantee but at least it has a chance. So tell me what chance do I have?

[Liam]

My son who has MS has a drug he takes. It comes with no guarantee
but at least it has a chance. So tell me what chance do I have?

At least this disease is not life threatening.

[bodoo2u]

I'll take this over cancer or heart disease any day. In fact, I didn't have a choice in the matter, so I might eventually have to take this and the other two.

[MUSICMAN]

My point is that no progress is being made in finding a cure / recovery from this disease. Why do the
urologists see you when they know there is nothing they can do for you?

[Liam]

I share your frustration, MusicMan.  I could venture several guesses about bogus (or at least crappy) research that looks legit and a sincere doctor who feels like he or she ought to do something.

The truth is we just have to hold on (not much choice) and wait for the breakthrough.  There are a few doing what I, IMHO, feel is legitimate research.

In the mean time, try some of the more promising treatments.  As you know, I'm using the heat/traction regimen and I'm better off than 4 months ago.  It not a cure, but improvement is better than getting worse or staying the same.

[j]

The cure for Peyronie's is going to come from research into fibrosis.  And there is significant research happening in that area.  For example, in this month's Scientific American there's a brief article about research aimed at ameliorating the fibrosis that occurrs as a side effects of radiotherapy for cancer - and this is a huge problem.  They're looking for drugs to prevent the fibrosis by blocking our old friend, TGF-beta.  

[Hawk]

TO THE MODS:  Is there anyway to have a RESEARCH/ABSTRACTS sticky thread or separate forum where we could collect links to abstracts about supplements/treatments. Individual posters could list their favorite abstracts beneath the primary post and someone could edit that primary post periodically to include links to the newly contributed abstracts.  

Amigo,

That is worth a try.  If you want to collect some and group them in a post maybe I could transfer them to the "Research Library" board.  Instead of that we could consider a topic on the main board.  I think I prefer the "Research Library" however.

[Liam]

The cure for Peyronie's is going to come from research into fibrosis

J,

I agree with you.  Help for us will be the byproduct of research for another fibrotic condition.

We must address the cause of plaque and treat it.  We must also eliminate the plaque that is already there.  I believe these are distinct issues and may not, necessarily, have the same treatment.

[Hawk]

The cure for Peyronies Disease is going to come from from research into fibrosis

I agree with you.  Help for us will be the byproduct of research for another fibrotic condition.

Why is that?

[Tim468]

The solutions will come from the smartest and best funded scientists working in this general area. So far with few exceptions, those scientists are not urologists. Anthony Atala is one smart guy, and Cadavid-Gonzolez is another. Tom Lue is smart and a quick adaptor, but I am uncertain of the originality of his work. He is, however, quite productive and determined to get the field advanced forward. All the rest are fairly common and mundane IMHO. When I read "studies" like the recent one from NY which had such a deceptive title about verapamil efficacy, or yet another "studY' out of Texas about Verapamil cream, or another Italian study about ALC.. well, I don't get too inspired.

Tim

[j]

Hawk - I say that because Peyronie's is fibrosis, part of a group of disorders known as the 'superficial fibromatoses', all of which exhibit the same biochemistry. Fortunately for us these seem to be genetically distinct from dangerous 'deep' fibromatoses like Desmoid tumors. Check this link:

http://www.nature.com/modpathol/journal/v14/n7/full/3880374a.html


Tim468: Yes, for whatever reason, the research done from a purely urological perspective has been of low quality.  Fibrosis in other parts of the body is easier to evaluate, change is more measurable, patient participation is easier to secure.  Research into something like improving radiological treatments for lethal cancers can attract big money.  That's the context in which the problem of excess TGF-beta (or whatever the culprit turns out to be) will be solved.

[Hawk]

Tim468: Yes, for whatever reason, the research done from a purely urological perspective has been of low quality.  

Why is that?

I understand related fibrosis.  My question focuses more on asking why we do not have more specific , high quality work focused on Peyronies Disease by the urology community and pharmaceutical companies.

[George999]

I very much agree with J.  In fact, I would say that we would not know much of what we already do know about Peyronies if it were not for research actually directed at other forms of fibrosis.  The whole Pentox approach was really adapted from the use of Pentox for other forms of fibrosis.  The key part that has been based on Peyronies research itself has mainly had to do with linking Peyronies to other forms of fibrosis.  And the big breakthrough indeed will come from research on other forms of fibrosis that will eventually be adapted to Peyronies treatment.  - George

[Tim468]

I think the reasons are complex. The urological community is not populated by the best and the brightest, IMHO (with a few exceptions mentioned before). People go into it to operate - it is a surgical field. SEcondly, there is more to be done in "hotter" fields like prostatic disease and cancer - which as you know all too well is not a trivial pursuit.

Basic bench science needs to be done. There are more important diseases like heart disease that a small improvement will save the lives of millions of people. Here, a small improvement won't make much difference.

The model of the CF Foundation (CFF) is relevant. An orphan disease, it did not turn around until parents banded together to make the CFF, and then they sought out the smartest scientists and paid them directly to stop what they were doing to work on CF.

For all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.

Tim

[George999]

For all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.

Tim, I think this is a major key.  I suspect that Peyronies is WOEFULLY underreported, since it is likely that a lot of men who have the problem would rather die than even share it with their doctor.  I think a lot of men consider it to be a shameful thing that strikes at the very foundations of their manhood and they prefer to keep it a deep dark secret till the day they die (and beyond, if at all possible).  In addition, there is an unspoken societal attitude toward such things that prefers to deny their existence (other than, perhaps as punishment for some of the most abominable sins imaginable).  So there is simply little impetus to investigate such a condition.  ED once occupied the same dark environs, but then when the large pharmaceutical companies found that there was gold in them thar hills, that whole paradigm changed and ED is now a household topic (for better or for worse).  But I really doubt that Peyronies will ever turn out to be the same money machine that ED has been, so that door is pretty much closed as well.  Our best hope is really in all those parallel diseases that are likely to generate treatments like Pentox (but more effective than Pentox hopefully) that can be used off label to our benefit.  And because of the research pace going on with so many other regenerative diseases these days, I believe that is not an empty hope.

[Hawk]

The model of the CF Foundation (CFF) is relevant. An orphan disease, it did not turn around until parents banded together to make the CFF, and then they sought out the smartest scientists and paid them directly to stop what they were doing to work on CF.

For all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.

Tim

Thank you Tim.  That was the reason to the "WHY" that I asked and that is where I wanted to focus attention.  Much of the reason that we will wait for a "byproduct" of research on some other area of fibrosis is because of the Peyronies Disease community of patients.  Thus far, we have chosen to wait.  That is our right of choice, but I will never believe that we could not change that if it meant enough to us that we did all we could do.  In my opinion, we have not earned the right to bitch about what the professional arm of the Peyronies Disease community is not doing.

It is the way it is largely because that is the way we choose for it to be.

[j]

Hawk, sorry I misunderstood your question. My take-away from that item in Scientific American was that big money IS going into research on fibrosis now, for a couple of reaons. One is that fibrosis caused by radiation is a serious limiting factor in cancer treatment - if the side effects could be controlled, more cancers could be irradiated all the way into remission.  Another reason is the fear of muclear terrorism - the feds are releasing tens of millions of dollars for research aimed at treating radiation exposure, and that includes fibrosis.  

And, I'm organizing a million-man march in Washington DC to draw attention to Peyronie's.  We'll start at the far end of the mall and march toward the capitol - when we're about halfway there, we take a 45 degree bend to the right...

[Hawk]

OK, J,

Your march idea made me smile  .  I think it is a novel catchy idea.


While I agree that fibrosis research will benefit Peyronies Disease, do not however discount the work in tissue engineering and gene therapy that is making remarkable strides.  

[ocelot556]

I am 100 percent behind gene therapy research - it alone should, in theory, be able to cure anything that we as humans are naturally suceptible to get. Given time.

And that's the issue. Hawk, do you beleive that gene therapy for peyronie's (or indeed, for anything else) will be available in our lifetime? I'm 23, and even I can't forsee gene therapy helping me personally. My kids, maybe, my grandkids definitely - but we only recently (within the last 10, 15 years) fully decoded the human genome. I wish gene therapy would be available ASAP, but when you're talking about a field that was virtually science fiction twenty years ago...

[Hawk]

Ocelot,

Did you view the clip under developmental treatments I posted yesterday???
http://www.history.com/media.do?action=clip&id=mm_hts_gene_therapy_broadband

If so the answer was gene therapy within 10 years and tissue engineering within 3 or 4 years.  I am not sure I would hold my breath that it will be available then but in you normal life time, there is no doubt.  They can already grow an animal penis or vagina in a lab (I think you will only be allowed to have on or the other  ). They have also used gene therapy to rebuild a working rabbit penis that had all the erectile cavernosa tissue removed.  They believe they have also successfully tested gene therapy on men with ED to provide 12 to 18 months of functional erections with one injection.

[tman]

Hey guys

Didn't really know where to put this.  I have posted a couple of times and just wanted to give the report from my initial uro visit yesterday.  I have been to him before and really like this guy, I explained my injury back in June, he gave me an exam, pulled, stretched, squeezed...He could not palpitate any plaque.  But he did say that it would only take a small piece of plaque to create a bend.  Himself and his group was fully aware of Dr. Levine's work and has been to conferences where he and others has spoken.  This doc has done many injections but in my case he would not consider because of the lack of finding plaque. I mentioned Pentox, Traction, and some of the other treatments. He thought traction was showing promise and was one of those things that wouldn't hurt anyway to do. He didnt want to consider Pentox at my stage because of the fact he didnt think it was "proven" enough to start a treatment.  His opinion was that a large percentage of men get better and they will claim one treatment to another, but how do you know if it was the treatment or just getting better on it's own.  The good news for me was that he wanted to monitor me and he thinks within a year I will be ok, and he said he has seen cases where it goes away almost overnight.  He did say though that there is always a possibility it will get worse or stay the same.  His group did a group of men a few years ago with radiation treatment, 100% of the plaque was taken care of but 1/3 of the guys went impotent.  He thought it was a good idea for me to keep doing the Vitamin E, Traction (with heat). He was telling me that he just was seeing a patient with a severe curve that was considering surgery, he starting using a VED and within six months he had calmed down to about a 20 degree curve. Now again he said that who knows how much the VED helped but it sure looked promising. Anyway, just wanted to put my story out there about my first visit since this has started. By the way, I am using traction and heat, even my wife told me the other night the curve didnt look as bad as before. So who knows.

[jsotheby]

Hey Antony,

I tried to reply to your message but it said your box is full.  Could you empty some messages so my reply can come through?

Thanks.

A.J.

[Liam]

Did your doc offer a reason why he thought it would improve?  Was it because he didn't feel plaque?  I hope he is right.  I'm also glad the traction and heat seem to be working.

[tman]

He just said he has had several patients over the years that have gotten better without any treatment, and several that has gotten better with some sort of treatment, but he said without intense studies from the medical community you cannot prove that one treatment works over the body healing on its own.  He has given several Verapamil injections and has seemed to have success, he wouldnt at this time on me.  He said that Dr. Levine says the same thing in his lectures but is very proactive in treatment. He said some guys just can't afford doing all of these treatments and they aren't even proven at that.  He didnt sugar coat it though, he did say I might get worse or never get better.  He thought it was to my advantage that my injury occured while the penis was flaccid instead of erect, and that he couldnt feel any plaque in a pretty intense exam. I am still going to do the traction, Vitamin E, and heat though, I feel better doing something.  

[Ralf3]

Hello everybody!

I am back to share my condition experiences with you again...

Well first I have to say, there has been some progression in my condition what naturally makes me more and more worried about my future life...I posted my last message sometimes in August and since that I can say, there are several more dents over the whole tunica (not only lateral sides as before),there is also one deeper indentation on the left lateral side, slight loss of lenght (maybe 0.6 inches) and girth, my penis is less elastic, it is all hardened when flaccid, slightly less sensitive, some veins visible under the skin are narrowed, there are some palpable and non palbable (but visible) short ringlike lupms that are soft and moveable, random not very sharp pain. Actually there is no bend, but when the erection begins, it curves downwards, but it dissapears when fully erect.

As I wrote in my previous posts, I am circumcised since 2003 (I was 17) (because of untreated phimosis since I was 10) and I have been suffering from infectious mononucleosis since May this year. They also discovered Staphyloccocus aureus on my glans later in August..well, I believe that this mono has something to do with it..but the strangest thing is, that I had no injury, no sex in the initial and later stages of mono..I was in hospital for one week and then I was only at home, I needed much rest and sleeping, because my body was exhausted. So no sport, nothing...and once, I felt that my penis is somehow more hard than usual....a strike from heaven.  

I still can achieve good erection (but he onset is slower and sometimes unable to maintain for longer time), I still can have an intercourse, also strong orgasms, morning erections, but I feel and I know, my penis is ill and that unknown illness is slowly progressing. This makes me very depressed sometimes..you know, the fear about the future and everything..

Well I have been suffering since the very beggining of June. Have visited a few doctors, with no exact solution, only these magic words: "if you want to heal, buy viagra." They have made me several SONO surveys, but nothing was wrong in there.

So I decided few months ago, I will treat myself by myself for some time...Since September I take vitamin E (400 mg daily) , complex of vitamins B called Pangamin (4 pills 2-3 times daily, since October), topical applying of special Tea Tree cream (every night, since November), Bromelain (1000 mg per day, only three days yet).
Want to take also Gotu Kola and/or Ginkgo, considering L-Arginine or Acetyl L-carnitine.
The only thing I dont want to take are strong drugs, like Viagra...first, its deadly expensive...here in Slovakia it costs cca 500 slovak crowns (21 USD), average month sallary is cca 18.000 Sk (782 USD) and imagine that many many slovak people earn only around 13.000 Sk (565 USD). No way of regular buying this thing...and then, it may also have bad side effects, you know.
And in case of Pentox, I think that no slovakian urologist would prescribe it, because they have lack of or no information about using it to partially treat fibrotic actions.

So. Boys, what do you think about all these things? Is there any chance for me?

I have very good girlfriend (thank god!). She always encourages me by saying: "Everything will be okay." She also prays for me (so do I)..We started to go out in February this year (that time I had no idea what is tunica albuginea or who is Francois de la Peyronie ). I told her about my problem in July and we had our first sex in September. And that time, it had been already 4 months that my penis illness was on. She was (and is) not complaining of anything (maybe she doesnt want to hurt me ), like she dont find it so good any more because of the loss of size of my penis or something, you know.
The only thing I am scared of sometimes (to be honest, many times) is that one day (when my tunica or both cavernosas will became one big scar tissue and unable to expand), she will cheat on me or break up with me...this is the only thing that has been making me nervous last months.

Well, so this is my story, this is my suffering and I STILL HOPE it will stop progressing one day or even reverse somehow...we never know what can happen.
Sometimes I wonder, is sex making this fibrotic conditions worse?

Thanks for this greatest site on the net (along with the online pharmacies ) and thanks for your further advice.

Ralf3 (21)
Slovakia

[roadblock]

Came across this while just cruising around the internet. I never really dared to think that any of the newest genetic techniques could actually be effective in healing or growing a new body part because I couldn't fathom how it could happen. I could not envision this organized redevelopment of an organ, which is obviously comprised of various tissues. Tissues...no problem. But not organs. Well...how about a brand new organism from just 1/276th of the original? No problem...

http://www.nsf.gov/news/news_summ.jsp?cntn_id=107916

Some of you out there who are really struggling day to day with this problem, just keep in mind the number of bright people out there developing new strategies for fibrotic disease. Soon something will come along that will improve our situation for sure...maybe even cure it!

[Tim468]

Ralf, hang in there.

The infection is a very big "trigger" for inflammation - so it seems unusual but a very likely cause of your Peyronie's.

Many of us have weathered this disease for years, still having sex and still getting hard (enough) and still screwing up like anyone else does in relationships. Your girlfriend may cheat on you - you can't control that. But you can get help for your fretting and worrying for that might hurt you much more than she will.

I would work hard at stretching the penis daily with the VED or the traction device. Many of us have found one of those to be the most helpful part of healing. I would also work CLOSELY with your doctors to make sure that the staph is gone. You don't say if it was in the skin or deeper - but if it persists, it can cause damage and if it is methicillin (an antibiotic) resistant staph, it can be very hard to get rid of. Repeated cultures and close follow-up is very important. If it is all gone and you are now dealing with the aftermath, you may do quite well, even heal up completely.

Tim

[craig42]

Hello, I'm new to this site and Peyronies Disease.  A few months ago I found an hard lump on the shaft of my penis and went to doctors and hopital and was diagnosed with Peyronies.  On reading about Peyronies on the internet, the symptoms (fitted the bill), as they say completely and i am just starting to accept the lump and pain, which on a positive note seem to be getting better.

The reason why posting this post, is that I have now found another small, but hard lump on the shaft of my penis near the head of my penis.  Is this normal within Peyronies to have more than one hard lump?

Can and do people with Peyronies have more than one hard lump?

Thank you,

[Old Man]

Craig42:

Yes, one can experience more than one hard lump or plaque on their penile shaft with Peyronies Disease. In my case, I had two hard lumps, one large area of plaque as well as an hour glass indentation of one side which later went away, only to develop on the other side.

So, bottom line, Peyronies Disease can manifest itself in just about any place on one's penis. It seemingly has a mind of it's own and will do just about what it wants to do.

Suggest that you read as many posts on the main forum as you can about symptoms of Peyronies Disease, their cause and just maybe a treatment that would work to help you. All of us here have seen many days of suffering with Peyronies Disease, ED and other men's health problems.

If we can help in any way, feel free to call upon us.

Old Man

[Hitman]

I know that this study was done on diabetic mice but I thought I'd post it. Please feel free to remove it to another section if its not suitable


Protective effect of Withania somnifera (Solanaceae) on collagen glycation and cross-linking.
Department of Biochemistry, Islamiah College, Vaniyambadi 635 752, Tamil Nadu, India. [email protected]

Modification of collagen such as non-enzymatic glycation and cross-linking plays an important role in diabetic complications and age-related diseases. We evaluate the effect of Withania somnifera on glucose-mediated collagen glycation and cross-linking in vitro. Extent of glycation, viscosity, collagen-linked fluorescence and pepsin solubility were assessed in different experimental procedures to investigate the effect of W. somnifera. Tail tendons obtained from rats (Rattus norvegicus) weighing 250-275 g were incubated with 50 mM glucose and 100 mg of metformin or Withania root powder or ethanolic extract of Withania under physiological conditions of temperature and pH for 30 days. Formation of advanced glycation end products (AGE) was measured by fluorescent method whereas the cross-linking of collagen was assessed by pepsin digestion and viscosity measurements. Tendon collagen incubated with glucose showed an increase in glycation, AGE and cross-linking of collagen. The collagen incubated with W. somnifera and metformin ameliorates these modifications. The ethanolic extract of Withania showed more prominent effect than Withania root powder. The activity of ethanolic extract of Withania is comparable to metformin, a known antiglycating agent. In conclusion, Withania could have therapeutic role in the prevention of glycation induced pathogenesis in diabetes mellitus and aging.

PMID: 17329138 [PubMed - indexed for MEDLINE]

[George999]

Very interesting.  Withania somnifera is commonly known as Ashwagandha.  But while this is indeed interesting, what worries me more about it than the fact it was done with mice is the fact that it is an "in vitro" study.  There are many "in vitro" miracle substances around that subsequently proved useless "in vivo".  At this point, I just happen to be taking Ashwagandha for the past several months without the slightest knowledge of this study or any clue as to anything anti-glycant about Ashwagandha.  I have been taking it for other reasons, but this is certainly interesting to know.  Thanks Hitman!  - George

[gbb]

Hello.  Seven months ago after a long bout of sex, my penis became swollen.  Eventually, three places arose. I saw Dr. Levine, who said I had a rupture.  He put me on Pentox and Arginine.  

Now, SEVEN MONTHS LATER, here's my best description... the places are lumps, slightly bulging.  They can be seen and felt, but are really no big deal.  They look mainly like small ridges.  When flaccid, the lumps can hardly be felt or seen.  Only when I have an erection, do they become noticeable.  As far as my erection goes... when it starts there's a slight curvature to the left, but as my penis fills with blood, the erection straightens completely.  

So George, Hawk, Tim, Liam, etc...

It's apparent you guys have done a ton of research.  I think this is a significant question and topic.

If someone injures their penis (fracture, rupture, etc.) and no curvature develops... and there are still strong, frequent erections, when can you say this guy won't get Peyronies Disease?  This really turns into a more general question... How long does it take injuries to the penis to heal?  Then, if it's completely healed and there are no Peyronies Disease related symptoms, you can conclude this man doesn't have Peyronies Disease.  Does anyone know the magic number on this?  Six months, one year, etc?  

As it pertains to my situation, I'm curious about this time frame, because I wonder when I'll be able to stop stressing about it and know that it fully healed without development of Peyronies Disease.

All answers/comments appreciated.

[Steve]

Well, my personal opinion is that if you've gone 7+ months after your injury with no noticible bend while erect, then you don't now have Peyronies Disease!  For me, the bend started about 2 months after the injury, and has been stable ever since it started!

I don't think that this means that you'll never have Peyronies Disease, anymore than you can be guaranteed not to have some form of Cancer in the future.  However, I think that your chances have fallen back to the probability that anyone in the general populace could develope Peyronies Disease.

In other words, stop stressing over what isn't there now, and look to the future with a positive outlook -- stress never does anyone any good.

Steve

[Tim468]

gbb

I don't ahve a great time fram e to give you, but it seems that you are mostly out of the woods.

I cut my arm years ago and still carry a scar - you may have a penis that looks different than it did before the incident for the rest of yor life. But that is different than a disease that causes progressive contraction of a scar-like tissue. One is normal wound healing (and you certainly suffered a wound!), the other is abnormal wound healing, which is labeled Peyronie's Disease.

It seems that smart and aggressive therapy helped you dodge a bullet, and how much more gains you will have over time are not clear to me. I do note that in the published case reports of penile injury treated with Pentox, that one person kept it up for two years and saw more gains than had been found at one year. FWIW, that may mean you have more "healing" to do yet.

Tim

[Bongo]

Being 28 years of age, male Caucasian from Denmark, I believe that I have been living with the condition Peyronies Disease for almost four years by now. Possibly my condition is worsened by other complications, which means that from day one, I have had difficulty in obtaining and maintaining an erection. Consequently, my sex life has been dramatically affected and being a bachelor, I find it hard to engage in relationships due to the fact that I feel that I have been deprived of part of my manly hood.

Throughout the years of frustration with no doctors being able to give the ultimate solution, I have studied the subject carefully from the limited sources available on the internet. Posting this on Peyronies Society is my "last resort" and I hope that someone here with sufficient knowledge and experience will be able to respond with advice and hopefully ideas on what to do next.

Unlike many others with this condition, I do not have a visible bend and the plagues themselves are not visible. My biggest problem lies in erectile disability, poor sensation of the penis as well as poor ejaculation and orgasms and the lack of spontaneous erections. I will try to sum up the history of my condition – running through the problem itself, the diagnosis and post and current treatments carried out.

Cause & Problem
In May 2004, I realized that I had a wart behind the head of my penis in the area that I believe is referred to as the coronal sulcus. At the time, I was living in Malaysia and my doctor gave me some cream to apply. However, I did not follow instructions carefully and unfortunately, I left the cream on for too long. The foreskin became very red and inflamed. I did not worry about it and I carried on with sexual activities with my girlfriend at the time. Sex was painful and I remember one episode, where I experienced terrible pain in my penis. It was as if I had been struck by lightning.

Soon hereafter, I developed a string like artery or vein (I think it was the left dorsal vein running through the entire length of the penis). Erections were painful and soon the string was replaced by some sort of ring, which was under the foreskin. Best to describe the appearance would be like a thick rubber band trapped under the foreskin behind the penis head.

As "lucky" as I am, I also ran into a serious beating at that time, where I had a few serious blows to the face and forehead (I am not sure if that has any relation, but I guess that I will never know).

I began experiencing difficulty in obtaining and maintaining an erection, but my doctor said not to worry and that I should give it a few months. However, things deteriorated and after a few months I could hardly get an erection. I went on holiday in my home country, where I saw a urologist. He mentioned Peyronies Disease because he could feel some nodules and what not and that it could take up to 18 months to resolve by itself. I waited in agony, but nothing really happened. I saw many so-called specialists, but all were confident that it was psychologically related. Let me say here, that until the incident, I had been sexually active and fit for many years with no problems.

Finally, I was referred to a specialist in urology or let me rephrase that, a guru in this field of medicine in Singapore. His name is Dr Peter Lim.

Diagnosis & Initial Treatment
Dr Peter Lim immediately noticed that I suffered from seriously inflamed foreskin behind the penis head. Furthermore, he could feel a lot of nodules, plagues, fibrosis etc. He referred to these, using these names. It was suggested that first of all, I should get rid of the foreskin and have a circumcision carried out. Due to poor state of the foreskin, I was told that I could develop cancer later on, if it was not removed. It was beyond savable in other words.

Surgery was successful and after a few months, I did see an improvement in erectile quality. It was the first time in years, that I was actually able to get a 80% erection. Before, with hard work, I could only get to about 60%.

However, I was still not satisfied. I wanted to solve my problem and get to the bottom of things. We discussed many alternative treatment options and I started to read about vitamins, minerals etc. Furthermore, I underwent one treatment of ECTS (Electrical Shock Treatment), from which he had had good results for other Peyronies Disease patients. I am not sure, whether it worked. I think one treatment is not enough, but it was very expensive, so I had to forget about that idea.

All this was done in 2006, where I also got a Dobbler Ultrasound as well as a cavernosography carried out. Both tests showed normal blood flow. Unfortunately, theses tests can't measure the blood flow at the tip of the penis (foreskin and penis head), which is where I believe that most of my problem lies.

By 2007, my contract in Malaysia was finished, and I had to travel back to my home country, Denmark. From the clinic in Singapore, where I had received a lot of help, I asked to get a document, which would describe what I had gone through there. Here is what it says:

Patient XXXXX
The above was seen in this clinic on 3 May 2006 for a chronically inflamed, soggy & painful balantis & preputial skin infection with multiple thrombosed veins at the dorsom of the the distal shaft and just behind of the top of the coronal sulcus. There was a thick and unyielding inflamed frenular web causing ventral chordee and there were several underlying thickened plaques within both penile corpora cavernosa diagnosed to be possibly peyronies plaques or fibrous plaques consequent on his previous history of trauma he sustained to his penis.

As he had erectile difficulty a cavernosography and caversometry was done on 4 May 06 showing no evidence of veneous leak causing his erectile dysfunction. A circumcision was advised to get rid of the painful beefy red and inflamed preputial skin with the thrombosed superficial veins (phlebothombosis). This was successfully done on 5 May 2006.
Although most of the infected skin was removed, some of it still remains and I can feel a lot of hard plaques underneath.

Current Treatment
Having returned to Denmark, I am again left with frustration. I am caught in the welfare system with long waiting lines to see any doctor. Before Christmas, I did see a urologist, but he just confirmed my condition as Peyronies and went on ranting about people, who have lived with this condition for years. He said that there was no treatment and that I should learn to live with it. To overcome my erectile difficulty he just gave me the same old story about Viagra etc, which I have heard a 1000 times before. This however, is not a viable solution for me. I want to return to normal and I want to try everything possible to achieve my goal. I know that it is not going to happen over night, but I am also certain, that there are many more options out there than this ignorant "urologist" told me. I guess it all comes down to the fact that as long as nothing has been documented, doctors working in a welfare model society are not allowed to consider other alternative treatment options.

I feel that I have to see the same doctor again and confront him with a few facts. This is partly also, where I need help from you. I have an appointment on April 14th 2008, so it would be appreciated to receive some advice before that.

Here's a run through of the vitamins that I am taking currently:

335mg vitamin E twice a day before meals
K-vitamin twice a day
750mg L-Arginine twice a day
Omega 3 capsules twice a day
1000mg MSM bio sulfur twice a day
Gingko Biloba twice a day after meals

Previously, I have tried Brommelain, Pentoxiphyline, Fibrozym, Nattokinase and Acetyl L Carnitine. Pentox is not a good option for me in the long run. I took it for more than half a year. It is expensive and to be honest, my ass was bleeding everytime I went to the toilet. Soon I will resume with Fibrozym, Nattokinase and Acetyl L Carnite, as I believe that I had quite good results with these products. (I felt that the penis tissue softened up).

Current Situation
As mentioned, I am now living in Denmark and I feel that I am left with little help from doctors and urologists. If anyone on these boards have any information on specialists in Peyronies Disease and erectile dysfunction located in Denmark, Scandinavia or even Northern Europe, it would be well appreciated. Furthermore, if anyone could provide a "check-list" on what to ask my urologist during my up-coming appointment, it would also be highly appreciated, as I already know the outcome of that appointment with my current knowledge base about the subject.

To sum up my current situation, living with this condition, I can say that I think about it everyday. Not an hour goes by without thinking about this and why I have to be different than everybody else. Why should I have to worry about all this stuff at only 28 years of age?

I can feel that the tissue in my penis is hard compared to what I can remember it felt like before the incident. I feel that pain comes and goes in the whole groin and penis area – especially at the root of the penis, but also in the testicles as well as behind the penis head. Generally speaking, there is a lot of tension down there. My foreskin seems thicker than it was in the past and as previously mentioned, there is a general lack of sensation and no spontaneous erections during the day. I do however have occasional nocturnal erections, which is probably around 80%, but the head of the penis is not as full as I remember from the past. That is also a general thing to note about the erections that I can produce. The penis head seems very "un-aroused".

I have noticed that when I am really tired, I do tend to have easier erections, although they are still not 100%. Also if I have been drinking, I have noticed, that erections are easier to obtain the day after. A funny thing is that once in a while, I can obtain a spontanieous erection (80%) if I am riding a bumpy bus.

My sex life has been extremely complicated and I have had to take various pills to get a good erection. These erections are however not good for me. They seem fake and I do not have much sensation at all. I have tried Viagra, Cialis and Levitra.

Sometimes I can achieve penetration with maybe 80% erection without using any PDE-5 inhibitor, but I have to pause and concentrate to maintain the erection – otherwise, I will loose it to around 60%, where penetration can't take place.

The problem with these drugs is that erections seem very strange. I get a lot of pain in the penis (possibly because I get full erections that push against the plagues). Furthermore, I get a terrible hard-beating sensation, my head flushes, I get headaches and I get really tired

General Considerations
Could this be complicated by a different ED condition and in that case, are there any specific diagnostic procedures and treatment options for these conditions?
o   Hypogonadism-associated ED
o   Penile Vasculopathy
o   Penile Fibrosis
o   Mondors Disease
o   Severe head trauma

Would it be an idea to try Viagra on a regular basis to force erections? What about Trazadone, Verapmill and penis vacume pumps and more ECTS for long term treatments? I know that frequent erections should be good to promote good health in your penis.

Last but not least, I have the bad habit of smoking. I am not a heavy smoker, but I do realize, that this unfortunate habit posses a big threat to me with this condition. I am however cutting down and starting from this coming week, I will put it on the shelf for good.

I know this was a long inlay on these discussion boards, but I hope that you will all welcome me here, as I have a feeling that I might spend much more time here in the future.

Your kind thoughts are very welcome and any ideas, suggestions for treatments and my up-coming visit at the urologist are appreciated. I would especially like to hear from people, who do also not have a bend but are still diagnosed with Peyronies Disease and who are also suffering from ED simultaneously.

Sincere regards from one struggling Peyronies Disease sufferer.

[jackp]

Bongo
WOW what a story!
1st QUIT SMOKING

The plack and scar tissue are the most probale cause of erection problems. I'm 65 and have scar tissue and plack in the corpora's from peronies and injections for erections.
You need to go to the VED section and get a good VED. Be careful and start of slow. If left untreated plack and scar tissue in the corpora's can cause penile shrinkage from lack of normal erections. OLD MAN has a great VED routine.

Vitamin E in 400 IU three times a day helps in some cases but I know of no meds that will cure the plack and scar tissue in the corpora's. If some of the fellow on this board know of some I'm sure they will let you know.
Good luck, you need a good Uro.
Jackp