Progression of Peyronie's Disease

[Tim468]

FWIW, when the shaft bends upwards, the glans is brought into more direct contact with the anterior vaginal wall. For me, this translated into more stimulation and faster orgasms.

Secondly, my erectile quality worsened over time with Peyronies Disease (Peyronies Disease) and I countered that by squeezing my pubococygeal muscles during sex to stay erect (basicly a Kegel exercise). That would bring me closer to orgesm, but the alternative (growing softer) was seemingly worse. So both the Kegeling during sex, and the increased stuimulation would lead to a more (relatively) rapid ejaculation during sex.

I think Peyronies Disease can and did for me lead to premature ejaculation. Now, using Horny Goat Weed (which works well for me instead of Viagra), I get and keep erections well. The tendency to get to the orgasmic brink very quickly persists, though. Other issues can affect that, though, including testosterone levels, so checking out the alternative reasons (including stress and anxiety) is important.

Tim

[Hawk]

Daniel,

Great news!  I am so happy for you!

I need to make a request.  It is critical to the users and guests visiting this forum that you post the specifics of your past condition, your treatment if any, and the details of your improvement under the topic "Improvement - Accounts of improvement in deformity or erection".  I know it is a pain but you can cut and paste sections of your other posts to cut down on entry time.

It means a lot to many.

Thanks

Hawk
PS: if your faccid penis stretches and Dr. Lue said no Peyronies Disease, I would not waste my time going elsewhere.  Bask in the good news.

[Daniel]

Thanks for the support guys!  Feels good to have a cheering section!

Liam,
I was about 20 when I first saw the curve (towards left) appear.  Could have been even earlier but I checked the earliest date I made a mention of it in my medical diary and it was 5 years ago.

Hawk,
I will gladly do as your requested.  Will get to it tonight or tomorrow.  I'll actually call the doctor shortly for a few more questions I came up with since the appointment.  So I'll share anything relevant in that conversation.  Btw, it was Dr. Martin Gelbard, not Dr. Lue.

best,
Daniel

[Liam]

I'm impressed.  What a great idea.  That would be a good idea for all of us to track our condition(s).  I have to confess, though, at 20 I couldn't keep up with my car keys much less a diary.  You must have had a good role model to be so organized.  My wife's family is that way.

Liam

[allj]

Is it possible - Is anyone interested in devising a quasi scientific questionaire for people to fill out say after 6 months and 1 yr of treatment. Questions could be related to type of treatment and curvature changes. I don't know what this entails and if the administrator of the forum has the wherewithall to do this but the information could be helpful for those who want more accurate information and treatment options.  Alan

[Liam]

Since there is no baseline measurement for most, any survey would be based on a biased subjective opinion.  I have seen posts saying one day they are better and the next day they are worse.  A few of those would render the survey worthless.

If there was some way to find an objective measure, I would be all for it.

[allj]

Liam:
While a survey may not adhere to strict double blind scientific procedures, I think it can still be of value. People now post all kinds of subjective results and opinions but there are no mechanisms to filter the data or put it in a timely perspective.  The question is whether having this more organized and presented in a more coherent and meaningful way is helpful and worth the trouble. For me getting info say 6 months and again at a year would yield more accurate info than what I see now. Some initial criteria needs to be garnered, like angle of bend or bends and what treatment options are being used. Even knowing the percentage of answers to improvement such as a little, moderate improvement or significant improvement would help me decide what to do if anything. If you are looking for anything more accurate than this, I understand this certainly is not worth the time. Alan

[Hawk]

Alan,

We have some polls under that section of our forum.  We also have more detailed surveys on topical Verapamil and Intralesional Verapamil on our website.  Even without the truly scientific survey, a good survey is very difficult to put together.  It must be worded so all possible answers are included but in such a way that no answer overlaps any other answer.  Then, it has to be put in web page format and finally the responses compiled.  Often participation is low and it frankly takes a huge amount of my time for the limited participation.  If everyone supported such surveys I would be much more inclined to put the extra time into them.

[johndoe]

Been using EMS (electric muscle stimulator) for about 3 months now and have already seen significant results. I haven't seen any research on this method, I kinda created it by deductive reasoning. I've use it twice a day, 20 minutes at a time. I've seen a difference in the elasticity of the plaque and a few degrees curvature correction. I'm also on vitamin E orally and topically. Just curious if anyone else has use this or a similar method of treating their Peyronies Disease.  

[George999]

Thanks for bringing this up johndoe, this is very interesting and I haven't really given to much thought to this type of approach, but I can certainly imagine that it could work.  Anything to could serve to gently exercise the Tunica could possibly be capable of disrupting plaque formation.  And since plaques are constantly breaking down, if you can disrupt their formation, you can defeat the process.  I suspect that the VED works via similar pathways, but this could be far more effective if it indeed works.  Please keep us updated.  Perhaps you could also provide information on the device itself in case any other brave soul around here might want to give it a review.  It is just this type of exploration that might crack open the door to a more effective and complete solution to this affliction.  - George

[percival]

Jondoe
Thanks for reporting on this treatment. It sounds like pioneering work, so congratulations on getting some positive results.
Like George, I would like to know something about the technique - perhaps you could elaborate.
It sounds a bit scary as it conjures up galvanic experiments with frogs legs, or even Dr. Frankenstein's creation - 'throw the switch Igor, the storm is at its height!'
However, I expect you are using something a lot more sophisticated than a kite in a thunderstorm with the string attached to your unit.
Seriously though, I would be very interested in learning about your method with view to trying it myself.
Regards,
Percival

[Liam]

 

Common sense.  HELLO!



Be careful guys.

[johndoe]

well thanks for the reply guys and even though it sounds a bit scary i assure you it's not, i'm not stupid. i have many years experience with EMS therapy. i used to be an athlete in high school and in college. i suffered injuries pretty much on a weekly basis and lived in the training room. a few of my injuries dealt with plaque and or lactic acid build up in my muscles where i had to use EMS therapy to get rid of the build up. the rest is easy to figure out, if the problem that i'm having in my penis is due to "plaque" build up, and the EMS therapy did wonders for me in other areas of my body, why wouldn't it work there? (deductive reasoning). now i'm in no way telling everyone else to do this as it's not a medically recommended method for treating Peyronies Disease, i took this risk myself and am willing to see how it works out (so far so great). i'm providing a link to the device i bought. what i do is place the two electrodes on the side of my penis where the plaque is. one at the top of the penis and the other at the base. i then turn the device on to a very, very low frequency, just barely enough to where i can feel it and be comfortable. i stretch out my penis as far as it can go and hold it there for about 20 minutes and then i'm done. i've been doing this twice a day for a while now and have already seen significant results. i'm curious to see how it looks a year from now. i'm going to stay on this therapy (as it seems not to be harmful in anyway) as long as i can as well as my oral and topical vitamin E therapy (one tablet in the morning orally, and then i rub in vitamin E once every morning as well). i'll keep everyone updated and informed with my progress as much as possible.

http://www.activeforever.com/p-1088-ems-50-electronic-muscle-stimulator.aspx?Source=Yahoo-Shopping

[Hawk]

John,

There are a few pieces of evidence out there that would indeed make one ask the question  "would administration of electrical current be helpful".  The problem with "deductive reasoning" is that you must have sufficient knowledge and facts about the subject at hand.  Deductive reasoning applied on the basis of one or two facts actually becomes little more than a guess.  It is a dangerous way to experiment on one's only penis.  Many ideas that seem good on the surface turn out to be catastrophes because of a single unknown, or one unconsidered factor ("The best laid plans of mice and men go awry").  Comparing hypertropic scaring in the tunica with possible autoimmune characteristics, to "plaque" in voluntary muscles is a big jump.    There are surely more differences than similarities.  I am also interested in whether you are even saying ems gets rid of scar tissue in voluntary muscles?

Keep in mind, I am not suggesting you are not improving, and I am not indicating that the improvement is not the result of EMS, Often we can guess and be correct.  I am only putting such experimentation in perspective.

I hope you continue to improve and that you have stumbled upon a beneficial solution.

[Steve]

I seem to remember at some point that there was speculation that positive Iontophoresis results may have been the result of the current being applied, and not the actual 'delivery' of the medications?  Could JohnDoe's experience perhaps lend some support to that idea?

Personally, I'll wait for a LOT more background work before I 'Plug In', but it's an interesting idea to explore.

Good luck JohnDoe, and please keep us all up to date on your findings!

[Hawk]

Steve,

The speculation you reference in the post just prior to this one is one of the specific pieces of evidence I am in reference to.  Years ago I also read a study indicating that specifically, broke long bones, heal significantly faster if a steady very weak current is run through them. I never heard any more about that, and again, even if that is true it is difficult to speculate if it would impact Peyronies Disease and whether it would help or hurt Peyronies Disease.

[George999]

While it is obviously important to err on the side of caution, I nevertheless find John's discovery fascinating.  From some past personal experiences I would rather not go into, it just makes very good sense that this could be very effective.  I am totally convinced that mobility is VERY important to having a healthy tunica and mobility is something that Peyronies compromises rapidly.  Inducing a GENTLE twitch in the tissue in question would have all kinds of interesting effects on the cellular level.  This is just so cool.  Hopefully John will continue to keep us informed about his progress because it is really not until you are a year or two out with this sort of thing that you can really come up with a reasonable evaluation.  All kinds of things could potentially go wrong between now and then, most of them rather benign, but then there is also a slight risk of something more serious.  But at these low current and voltage levels (9v power source ... duh) and with the fact that this device is already known to be safe for other parts of the body, I can't see the risk as being very significant.  But the upside ... the potential upside is huge.  Its like an electronic VED in a sense.  My mother used a TENs unit for shingles and found it very helpful.  But hopefully no one goes overboard on this and plugs themselves into a wall outlet   .

[Liam]

...and then his penis fell off.

It's like eating raw oysters.  I love 'em but I'd never have been the first to try 'em.

BTW, I still haven't tried Adolf's Meat Tenderizer.

[Hawk]

George,

I find your posts to be among the most interesting and informative posts on the forum so I would be suprised if you would disagree with a point I would like to make.  You said:

While it is obviously important to err on the side of caution, I nevertheless find John's discovery fascinating.  

After thinking about it I am sure you will agree that it is way too early and too premature to even begin to refer to this as a discovery.  The data to indicate this has any positive effect on anyone's Peyronies Disease simply does not exist.  In fact if John had a total reversal of his Peyronies Disease the data still would not exist.  There is spontaneous recovery, he is stretching it for 20 minutes a day, and he is taking vitamin E.  A recovery would barely be getting us to the point of raising an interesting question that needed an answers.

I am not knocking someone cautiously trying this because I had a disposable EMS unit that I was given after a ligament graft.  I experimented with it a bit when I first got Peyronies Disease.

I am also interested in some elaboration of this point

mobility is something that Peyronies compromises rapidly.

.

The twitching of a muscle contraction from electrical impulse is one thing but keep inmind that the vast majority of the penis is not muscle in any form.

[johndoe]

WOW! i had no idea this topic would become a hot debate. no offense hawk but i don't see why you have such a skeptical tone. i understand if you're concerned about the flow of information on here but i'm in no way advocating this therapy to others! my intentions were 1.) to see if anyone else has tried this or something similar and 2.) if not, keep people updated on my progress with the therapy and hope that i've stumbled across something that can benefit the Peyronies Disease community. like probably most of the guys on here i'm very self conscious about my "manhood." i got tired of turning down intimate encounters because of the Peyronies Disease and decided to take a chance. but back the topic at hand... i just finished another EMS session. i've been monitoring the plaque very closely in the area that i'm treating with the device and have noticed about a 25% decrease in the "hardening" of the area. as i mentioned before i had a very noticeable "hour glass" deformity that has pretty much disappeared which is the reason why i've decided to continue the treatment.

[Hawk]

John,

I would not even refer to this as a boring debate much less a hot one.  A brief review of the posts here will illustrate that we are largely a close community and that like each other and enjoy the freedom to express ourselves openly.  There certainly is no chance of offense on my part from a post.  Open, on-topic discussion was the entire reason for starting the PDS.

My skepticism should be very easy to understand.  I see nothing more natural than skepticism.  It is the basis of discovery of truth.

Because A follows B does not mean A causes B.
Most men see changes in plaque and they rarely use EMS
There are no studies designed to evaluate EMS and Peyronies Disease
There has been no other anecdotal account of improvement from EMS

Based on this there is no appropriate response except skepticism (defined as - uncertain and questioning attitude).  Certainly it does not warrant an accepting attitude of certainty.  That is the attitude that would be surprising and unwarranted.

I don't question that you detect a subjective absence of hardening of plaque.  What is clear is that we have no evidence, much less proof that it is the EMS, that it would also decrease deformity, or that it could not trigger inflammation and increase deformity.

This is not an attack on you or on EMS.  It is healthy skepticism that is essential if we are to find our way.

Goo luck and keep us posted.

[johndoe]

hawk, i appreciate your concern but honestly i don't understand your ""negative" skeptical tone at all. the other member responses were of a positive and generally concerned tone. re-read your post and tell me if you disagree. look it's not rocket science... i'm trying this therapy out at my own risk. i know there isn't any scientific evidence supporting this therapy (that's the whole reason why i signed up here). i'm informing others about my experience with it both the positives and negatives (none so far) and would love to share my information with others. if every post i make is going to be criticized i much rather not post at all. hope you jump on board. JD

[Steve]

JohnDoe,

Please don't hold back on your findings...I think we're all interested to see if your findings are indicative of something that deserves further in-depth study.
If you look at Hawk's replies (especially his last), I think you'll see that he isn't skeptical that you're not seeing results, nor that you're trying to mislead us.  He's following a healthy approach that has been developed over many, many years of science--a single positive result is not indicative of a scientific fact.  What you've found may be something that could help a lot of us with our problem--or it may be something that helps only you!  As you keep us informed of your results, I'm sure that there will be others (I might be included at some point) who want to try out your methods.  Then as more experience is gathered and if the results are still positive, than we'll have something to recommend to other members and to present to the medical community in general.
You're among the first (if not the first) to contribute to this collection of knowledge, so please please continue to contribute!  As you do, I'm sure that there will be some people who think you've found a magic bullet, others (though probably not here) who think you're pushing 'snake oil', but most will be somewhere in between--hoping that you've found something great, but waiting for more results.
I'll end with a quote from Hawk's last post:

This is not an attack on you or on EMS.  It is healthy skepticism that is essential if we are to find our way.
Good luck and keep us posted.

Steve

[Hawk]

John,

I only have control over what I say and not over what another chooses to infer.  In this case you seem to almost want to see controversy, drama, or offense where none exists.  At your suggestion, I reread with a critical eye what I posted.   I see nothing "negative" nor could I read criticism into my post even with great effort.  I am confident that the post was very clear to others.  I did attempt to explain the skeptical view we all must have of every issue concerning Peyronies Disease coming both from members, and the medical community.  Again, I can only take responsibility for explaining as I have attempted to do.  I cannot control your understanding of what I post.

I fear that such sensitivity would lead to very limited dialog rather than the open dialog we all strive for on our forum.  

My rule is: A gentleman would never deliberately offend me, and no other can.  No one has intended to offend you and if someone ever does intend to offend you, that person is not worthy to be taken seriously.  It is a good rule to live by.

In regard to "hope you jump on board" , I am not sure I understand that comment.  Ideas, treatments, and theories, are not things we jump on board with.  They are things we question, test, study, and prove.  While I direct no skepticism toward you or your reports, I (like you I assume) am not at all sure EMS is a reliable Peyronies Disease treatment.  I will be thrilled if it or anything else passes the tests, and questions, and is established as reliable treatment.

Regards

[Liam]

I, too, share Hawks skepticism.  I have to tell you, though, I hope it works (as does Hawk I know).  We have seen many inventive proposals for helping Peyronies Disease on this forum.  Some good, some not so good.  They have all been scrutinized.  And, it is a good thing to advise against jumping in head first without checking the depth of the water.

One of the devices that has been questioned again and again and met with endless skepticism is the VED.  Yet it has continued as the "preferred" treatment of many, if not most, men on this forum.  I use it.  But, I will still, on occasion, question its effectiveness.  I believe that is a healthy thing to do.

BTW, If you check back on the forum, you will find the treatments and devices meriting their own topic have met with the most scrutiny.  This forum is all about debate, presenting the positive and the negative (apropos for this electric subject).  We can be up front and hard hitting (some actually resort to sarcastic humor...can you imagine) AND we do respect each other.  

There are many many men here with many many opinions.  Not everyone will agree with you on every subject.  Hell, they don't even always agree with me and I'm always right  .

Now my hard hitting question .  How did you measure the plaque to realize the 25% reduction?  Please understand, I am not doubting your honesty.  I just want to understand your methods.  Also, please give more details about the topical collagenase you use.  Where do you get it?



Liam

[George999]

I think it is really important to note that in going back over this forum you can find a number of novel treatment approaches how towed that later turned out to be dead ends.  I myself have been responsible for a few of these rabbit chases .  But I never fail to be excited about just the possibility that something might be effective.  If some of you recall my recent escapade with Camphor, the fact is that it made one of my plaques almost completely disappear within a few days, but never quite completely wiped it out, and by now, of course it has returned.  And gradually increasing skin sensitivity precluded continued treatment with the Camphor.  On the other hand, a second area of plaque never responded to it at all AND of other people on this forum who gave Camphor a try, several experienced some pretty nasty side effects and none have reported any significant lasting benefit.  That just shows how deceptive this disease can be.  So that is my position.  There is really a great unknown out there when it comes to treatment approaches.  That is both good news and bad news at the same time.  The good news is that there are a lot of stones yet unturned.  The bad news is that one can never be sure what might be lurking under one of those stones.  So, John, please do continue to keep us informed.  Thank you for the information you have provided so far and we ALL REALLY DO hope you are on to something with this.  But it is just too early in the process for all of us to 'jump onboard'.  But if all goes well, you never know when someone else might decide to jump in the pool with you and give it a try.  But I don't think that at this point we should be encouraging anyone to jump into this without giving it a lot of thought and realizing that there are potentially long term risks.  So, John, PLEASE, don't take the skepticism personally.  Have patience, try to use good judgment, and the result can be that we ALL benefit from this experience, EVEN YOU, EVEN if EMS proves to be a rabbit trail.  Because, while it is important that we document what works on this forum, I believe it is EQUALLY important that we very carefully document what has been tried and DOES NOT work.  That way, it will spare others the time and risks associated with exploring those attempts.  - George

Note to Hawk:  I would say once again, I am absolutely convinced that mobility (the deliberate flexing of the TA is important to its health AND is very likely to be therapeutic in terms of treating Peyronies.  While you are correct that the TA, in fact, has no smooth muscle cells (or any other type of muscle cells for that matter), the underlying CC does have smooth muscle cells that could theoretically be stimulated and that could theoretically pass that energy in rhythmic fashion to the TA.  One could argue, of course, that manual massage could be just as effective, but who would take the time for long to do manual massage thirty minutes per day?  And it has actually been argued by some that manual massage is beneficial.  - George

[johndoe]

well i appreciate everyone's "two cents" but i'm sorry i don't think it's worth the hassle to log on everyday and have to defend each post i make. i was hoping to just "discuss" what i've been doing with others, answer questions and perhaps even start a diary to keep the members who were curious about the therapy updated. but like i said, if i have answer to critics 75% of the time i'm logged on, i might as well save myself the trouble.  

hawk - just to clarify the "jump on board" phrase DID NOT MEAN to try the EMS therapy, i meant to contribute positively to the discussion that's all.

Liam - i noticed a significant decrease in the hardened area, i don't know how else to explain it, it used to feel like a baseball now it feels more like a volleyball, has a little more give to it, also please re-read the part about "no more hour glass deformity"

steve - i will keep the forum informed when i can, i was going to start a dairy but i'd just rather post here and there. i'll post every couple of months. this december would be about a year that i've been trying the therapy, i'll monitor my progress very closely and make a detailed post about my findings then.

[Hawk]

George,

Is your use of the term mobility just stretching the tunica through erections, traction, VED?  The term catches me off guard because I read every post and I don't recall a discussion of any other type of "mobility" being a factor unless you count massage.  

In any case, I cannot envision EMS providing anywhere near the movement, stretch, or "mobility" of these other methods.  If EMS is eventually shown to work, I would have to speculate that some other underlying processes are at work.

[BLBC]

I see most of you here as simi educated research scientists specializing in Peyronies Disease. You may not all have that PHD next to your name, but considering the current lack of professional research being done on our condition it makes sense to listen to and see what happens. I do take into account that some men's Peyronies Disease will go into remission on it's own, while others will not. Additionally what works treatment wise for some may not work for others.

I do believe that it is important to allow the bit of skepticism. But first I look at what skepticism is and what it can be to others. To some people it is apprehension while to others it is disbelief. So please give leeway when deciding how one defines a comment. I try to step back and always go with the most affable definition.

That said, I realize this is a devastating disease and a hell of a lot more needs to be done about. It is unfortunate that I also believe that a sufferer of Peyronies Disease will be "the one" that finds "the cure." To this person, well... Hurry up damnit!

So please John, attempt to realize that Hawk is not being negative about your current chosen treatment nor is he criticizing you. He most likely is taking a wait and see attitude and I would bet that he is hoping for nothing but a positive result in your endeavors.

Hawk, If I have over stepped my bounds in attempting to explain this, please spank me.  

[percival]

Johndoe
There were people around telling the Wright Brothers that they were crazy to attempt to fly. Don't be put off trying what you believe in but do keep things in perspective. I look forward to hearing of your continuing experiment with EMS
Regards
Percival

[Liam]

Please explain your use of collagenase.  Where and how did you get it?

Liam

[George999]

Liam, I didn't see John mentioning Collagenase anywhere.  I even did a browser find search and the only recent references to Collagenase were yours.  You might want to take a second look at his posts.  He DID mention that he is using topical Vitamin E, but NOT Collagenase.  - George

Hawk, I use the term mobility to describe motion.  By motion, I mean everything from outright stretching to far more subtle physical disruptions at the cellular level.  I realize that might be a whole new concept for many of you, but this is not the first time I have contemplated the concept.  It IS the first time I have contemplated it in the form of EMS stimulation.  I have enough experience with 'micro-motion' to believe that it just might be effective.  As I said previously, I really don't want to go into details regarding this issue, but suffice to say, I have has some personal experience that tells me we should not ignore the potential this technique.  That is not to say that I am confident that it will work, only that I am confident that it just MIGHT work.  I certainly realize that it means plenty of extra work for you in trying to figure out where to stash this long string of slightly off topic posts.  But progress always comes with a price.

I really believe that we have to be dreamers in a sense to make progress against Peyronies.  We have to think outside the box and realize that the universe of potential solutions is so vast that we never know what we might stumble across.  Most of us have seen so many things come along with what appears to be blockbuster potential, only to have their supposed effectiveness evaporate before our eyes.  After years of this, we tend to become a bit cynical and that can be a disabling trap.  Add to that that most of us have also seen a fair share of cruel hoaxes with people making claims simply in order to laugh at us when we grasp at the wind.  And then of course there are the scammers that are constantly attempting to pick our pockets.  All of this can suck at our hope and cause us to be overly cautious in terms of entertaining new possibilities that might come our way.

Let me tell you, I have very good reason for my overflowing optimism regarding Peyronies.  Around five years ago my life was literally slipping away.  One of the things that was driving me nuts was a disabling combination of panic attacks and heart palpitations.  The heart palpitations were lasting for extended periods and causing me to be sick to the point of nausea.  My doctor tried medication and it did not work and he told me that unless I was ready for some really draconian interventions, I should be prepared to live with it.  And then, somewhere along the way, I had a problem with urinary tract infections and the medication prescribed really affected my stomach badly.  In desperation I took Aloe Vera for my stomach.  IMMEDIATELY WITHIN 24HRS palpitations AND the panic attacks were gone completely.  The end of that was that the Aloe Vera CURED both problems permanently AND I have recommended it to a number of people and it has worked just as well for a number of them.  So, believe me, there IS a cure for this out there and it is just a matter of finding it and communicating it.

We have a HUGE advantage over the researchers in this regard, since they are very restricted in what they can pursue, they are constantly needing to find funding AND volunteers for their studies, and as a result, tend to move forward at a snails pace.  If a vendor comes up with a patentable product, research funding is guaranteed, but where would the money come for research on something as simple as EMS?  The cost of research is huge due to all of the liability and such, and who in their right mind is going to fund the testing of a product that can be purchased from one of multiple vendors?  Thus a whole range of possibilities is largely ignored by the research community.  We NEED to at least take interest in the possibilities and encourage those brave souls who are willing to put themselves on the line in order to investigate them.  I take my hat off to John for pursuing this technique, but I think he needs to have a thicker skin and simply continue to share what he is discovering.  -George

[Liam]

It was a typo in the original.  That explains the trouble finding it.  Maybe it isn't a typo.  Maybe its another product?  

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    Re: Surgery for Peyronie's Disease
« Reply #266 on: June 21, 2007, 11:44:07 AM » Quote Modify Remove Split Topic  

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thanks Tim i really appreciate your reply, it sounds like to me you know what you're talking about especially the part about the suspensory ligament being "medial"... as for hawk the story about the pipe... that story doesn't hold water in this case because the penis is not one connected organ (pipe) it has two sides that inflate. i was simply just inquiring if it was possible to lengthening just one of the sides to make it the same length as the other. my next step was to ask a physician but i'm always cautious of asking stupid questions, i thought i'd try here first. as for what's been working for me, i have my own regime i made up after researching some of the basics about plaque etc. that consist of  vitamin e (orally and topically), cologense (topically), and my personal secret... ems (electric muscles stimulator) twice a day for 20 minutes. been using that for about a year now and have seen dramatic improvements went from a 30 degree bend to where i'm at now 15 degrees. the elasticity is the thing that's improved the most, i used to have a hour glass and that's pretty gone away.

[Liam]

George,

I have enough experience with 'micro-motion' to believe that it just might be effective.

Is this related to vibration, harmonics, natural resonating frequencies, etc?  I am casually familiar with this concept.  It has me intrigued.

[Hawk]

I remember that post -  

[johndoe]

Just to clarify I was using Collagenase but I ran out and didn't want to go back and get another prescription for it. It's also too expensive to  keep as part of my regime which is actually the reason why I desperately sought other means i.e. EMS. I figured the machine only cost about 50 bucks and it last pretty much forever, just have to replace the batteries every once in a while. Vitamin E I can get at the store anytime for about 7 Bucks.

Note: Obviously I stressed the point that I'm in no way advocating anyone else to try this I think we all got that point, I also want to stress the fact that what might work for one person may not for another. I don't believe that there is one type of Peyronies Disease. I believe each of us have individualized cases and finding a "cure" is going to come down to trial and error anyway.

LAST UPDATE (Good News Bad News): I noticed that immediately after use of the EMS my penis in the flaccid state "hangs" pretty much straight as an arrow and my erections are "straighter" and stronger immediately after use (The Good News), unfortunately (and I'm not worrying about it yet) after about an hour or so my penis tends to return back to having a slight bend in the flaccid state and my erections are less straighter and not as strong. Like I said before, time can only tell if I've stumbled upon something. I saw a significant difference in the first 6 months of use and seemed to have plateaued a bit lately. I feel like the one year mark would be a fair indication point to see how the therapy has worked out. I'll post again when that time comes, I wish all the members here who suffer from this horrific disease the best, and sincerely hope that a "cure" is found soon so we men can go out into the world more confident and comfortable with ourselves.

JD over and out

[George999]

John, fyi: Pentox is probably a whole lot less expensive than Collagenase and it does work if given enough time.  Have you ever considered it?  For the record, I am not using it, but I might consider it in the future.  In any case, thanks again for taking the time to post all the good info and welcome to the group.  - George

[Cooperman]

I was diagnosed last month as having had Peyronies Disease for 10 months. I am scheduled for surgery next month, in Denmark where I live, to correct a not painful L-shape bend.

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)

A lot of what I've read here says avoid surgery. Other sites says surgery is the last resort and only after time.

My wife thinks it is getting better.

Can it get better all on its own? I have not read this anywhere.

Cooperman

[George999]

cooperman,

1) I think that the NHS claim that Peyronies usually corrects itself is way too optimistic, although that does sometimes happen.

2) I think that ten months is way too early to be thinking of surgery.  Surgery is basically irreversible and at ten months, your case has not really even had time yet to run its full course.  Also, the relatively inexpensive generic drug Pentoxifylline has helped some when used for an extended period of time without the risks of surgery which can always be performed later if that becomes necessary.  And this is not even taking into consideration the many other effective alternatives such as the VED.  In your case I would definitely be looking for a second opinion that would provide non-surgical alternatives.

- George

[Liam]

The exact cause of Peyronies disease is unknown, but in most cases the condition will eventually disappear without treatment. However, in some cases surgery may be required to remove the thickened tissue.

Now I can be a little nasty.

What kind of idiotic organization spreads that kind of crap.   It is so far from the truth it would be laughable, except for the fact there are men out there making decisions based on this garbage.  I only wonder how many other diseases they got wrong.

The truth is it almost never (I'm being nice here Hawk) goes away.  

I agree about using Pentoxifylline.  Try a VED for a while.  Save surgery until you've tried everything else.

[mark501]

Please don't rush into surgery! I have had peyronie's for about 3 1/2 years now. While some aspects of my condition have improved greatly, I still have the curvature. The area of plaque continues to change in size & location.

[Jorgesd]

I have had Peyronies Disease over 3 years and I am not confident that it is stable.  It's weird somedays the plaques feel large and other days small and soft.  I do believe that pentox is helping.  But I have never considered surgery.  Isn't surgery adding more trauma?  

[Liam]

You said it, brother.  It is the "de-gloving" that gets me.  OUCH!

[Hawk]

Back on the farm, I remember when we used to de-glove a hog right before a big family barbeque.

[percival]

Cooperman
Thanks for highlighting the grossly erroneous information being given out on the NHS Direct web site in the UK.
I have been paying into the NHS for 40+ years, and to read this kind of BS makes me extremely angry to say the least.
I phoned them to point out their error. A lady called Sue (no surname given) rang me back. She was a health information adviser based in the East Midlands and said she would pass my comments up the chain and someone would get back to me in the next day or so.
The telephone number is 0845 4647 (international 0044 845 4647) if anyone else would like to give an opinion on "in most cases the condition will eventually disappear without treatment". If only!
Regards,
Percival

[percival]

The NHS rang back and told me that I was complaining in the wrong way, and that I should send my complaint by e-mail to: http://www.nhsdirect.nhs.uk/contact/
I have done this, and suggest that anyone wishing to follow it up does likewise, as telephoning them is a waste of time.
Regards,
Percival

[Liam]

I may be wrong, but it seems its easier for them to delete an email than to talk to a human being.

Just me being cynical.

Nobody
Home,
Sorry

[Liam]

Mark(501) sent me this study to pass along.  Interesting stuff!

Thanks Mark!

1: Arch Esp Urol. 2007 Apr;60(3):326-31.Links
The natural history of Peyronie's disease.Grasso M, Lania C, Blanco S, Limonta G.
Department of Urology, Desio Hospital, Milan, Italy. marco.grasso@aovimercate.org

OBJECTIVE: Many physical or medical therapeutic approaches, systemic or local, have been suggested for treatment of Peyronie's disease. These approaches claim a discrete percentage of success in terms of clinical stabilization or improvement. The aim of our work was to evaluate the "natural history" of this disease. METHOD: 110 patients affected by Peyronie's disease have been observed for at least five years. At the first visit all patients maintained sexual activity not requiring surgical approach. No medical or physical treatments have been performed on these patients. All patients underwent twelve months follow up for at least 5 years evaluating the natural progression of the disease by means of ultrasound and clinical examination. We made statistical analysis (Odds ratio, P for trend) to check if there is association between clinical worsening requiring surgical treatment and: 1- age of patients, 2- diabetes, 3- presence of close relative pattern for diabetes and 4-Dupuytren contracture. RESULTS: Regarding curvature, number and size of fibrous plaques, a consistent tendency to stabilization has been observed in the group of patients above 50 years of age. 68% of the patients belonging to the group under 50 years showed a progressive worsening of the disease requiring surgical therapy, while in the other group only 31,5% of the patients required surgery. The statistical analysis confirmed that Peyronies Disease worsening is more probable in the group under 50 years of age (OR=3.5, CI:2-8) and in the patients affected by diabetes (age adjusted OR=6, CI:2-19). Statistical analysis has not shown significant differences in the evolution of Peyronie's disease regarding the presence of close relative pattern for diabetes and Dupuytren contracture. CONCLUSION: The patients presented a discrete tendency to spontaneous stabilization. The patients who are diagnosed under the fifties have a greater probability that the disease will worsen, requiring a surgical approach. The data regarding the natural history of Peyronie's disease in not treated patients should induce caution in awarding efficacy to new pharmacological and physical treatments.

PMID: 17601314 [PubMed - in process]

[ajb]

Hi everyone

I am 28 years old and I live in Australia.  

I am approaching 10 months with this disease, and at the moment it seems quite active.

I have seen two Uros, one a professor, and nether has taken a pro-active approach.  I have been told to take vitamin E and wait for it to go away.  I explained that I am experiencing soreness in the areas of plaque and increased sensitivity and discomfort in my penis while it is flaccid, and that these sensations a virtually constant.  

The professor refused to accept that this was a symptom of peyronies.  He simply said that it was not part of the disease.  He also did not explain things such as active and stable stages.  I have had ultrasounds and peyronies is definitely present.  

Is it reasonable to attribute the discomfort I am experiencing to peyronies? or is the professor right?

Also, as it appears that I am in an active stage, what oral treatments would you all recommend  for me? I have read that this is an opportunity and that I should not do nothing.   I would like to focus on treating the pain and discomfort, it torments me so much, that I can not function properly, I have suffered from anxiety disorder all of my life, and the constant sensations from my penis are triggering attacks.  

I would be greatful for any advise.

Thanks

AJB

[Liam]

How did it get there in the first place were it not "active"?  Pain is a symptom.  Yes the area with the plaque can hurt constantly.  Discomfort while flaccid is easily explained because your penis is CHANGING.  Naturally it will not "ride" the same in you boxers.  That is UNCOMFORTABLE.  Many of us get the "turtle effect" (our term on the forum) when the penis partially withdraws.  I use a traction device a couple of hours at night (see traction topic).  After a few days of traction that will go away (mine stays away unless the Peyronies Disease gets worse).

Use NSAIDS.  Get a VED (forum fav cause it seems to help).  Try to find a doc that will give you pentoxifylline (Trental) and Viagra (25 mg nightly).  Take l-arginine.  Check out the Highlights section of the forum  ( https://www.peyroniesforum.net/index.php/board,18.0.html  )  Tell the professor to go back to the island with Gilligan.  I think he's a couple of coconuts short of a creme pie.  http://www.gilligansisle.com/

Good Luck

Liam