CAUSES of Peyronie's Disease - started 2005

[Hawk]

I noticed that i've been quoting posts when that may not be required...

Quotes can be very useful.  It is not necessary to eliminate them.  In the future, after you hit the quote button just trim the quote down so we don't have entire posts repeated. (like this example)  

I appreciate you efforts to use subject lines that make the forum more usable for everyone.  

[newguy]

I appreciate you efforts to use subject lines that make the forum more usable for everyone.  

Thanks Hawk. I am eager to provide meaningful contributions to the forum. In a sense you, Tim, George and Oldman (and others) play a very meaningful role in this field. You are pioneers of sorts . You shine a light on an area that many medical professionals treat with complete disinterest and many others are simply embarrassed about. As much as it's shameful that others avoid peyronie's altogether, it's commendable that you provide a place for people with very real concerns, and often considerable distress to be themselevs and share their problems.

[wayne999]

Tim:
When you started using the small cylinder how long was it before you got the 10-15 degree improvement (dorsal,ventral,lateral)? Also, how long have you been using VED and what results overall would you say you have achieved?

[Tim468]

I got results once I started using the smaller cylinders within about three weeks. I had used the larger cylinder for about a year with no help in angulation.

The improvement stopped at about 10-15 degrees and did not get better - I still have an about 15-20 degree upward curvature at the end, but it does not get in the way of intercourse.

More recently, I have developed dents on the left and a tendency to curve to the left, that seems to be actively resisted by my use of the VED. One never knows, but I think it worsened over a two week vacation when I went without the VED, so I now stick to the VED (mostly the smallest diameter tube) quite religiously.

Tim

[wayne999]

Tim, some questions:
Was there any reason why you only used the larger cylinder for a year? Was your curvature not being forced straight at all because of the size of the larger cylinder? Did you notice any improvement in waisting/girth ? What was the longest period of time you stopped using VED and notice and relapse of any curvature and to what extent?

[Tim468]

I used the large cylinder because it was all I had and I wasn't sure I agreed with the principles of the protocol, so I did my own thing. I saw no real improvement until I used the narrow cylinder, which took me a few weeks to get the hang of using (I kept getting erections and being unable to use it; or not using enough lubricant and having it tug at my skin painfully).

I went two week without it and had a "bout" during which time I worsened noticeably - though primarily in the form of waisting or denting as I call it.

Tim

[Iceman]

TIM468 - how long have you been using VED?? and I notice you have never been on Pentox - do you think this has affected you rate of improvement??

[despise]

i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

[alcohen]

I have never heard that masterbation was limitless...  But yeah, that is definitely what caused mine.  Granted, it was my girlfriend masterbating me but same thing.  It is completely ridiculous for this to happen to anyone.  However, you've got people that go around using women for sex and beating them and throwing them aside, people who rape women, etc. and they are fine.  I am not.  

Life is BS.  

[Hawk]

People say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head.

Despise I have no idea if you are serious or a prankster.  If you are serious I feel for you but:

1.  What does "masturbation is limitless even mean?
2. What do you mean you learned to masturbate with your head?
3. If you humped carpet every day from the age of kindergarten then masturbated with your head () Peyronies Disease may not be your most pressing problem.


I have read over ten thousand posts but I must be missing something with this one.  Care to explain?


Hawk

[wayne999]

I think he means he came to his senses and started masturbating the "proper" way.

despise: What sort of angle do you think your curvature is? I also assume its ventral (i.e. downwards) ?

[jackisback]

God help me if anybody I know ever figures out my pseudonym, but I too humped the carpet when I was a little kid. Always loved to hump the carpet while flaccid (very important) or any hard surface. When I learned regular masturbation as a teenager I slowly discontinued this habit. One day I decided to see how many times I could masturbate consecutively. I think I did it 8 times, then decided to do the carpet thing when I could no longer masturbate. Looking back, sounds pretty pathetic and perverted, but I just kinda thought it was funny, kinda wanted to see how far I could go....kinda needed to study for exams and decided I should just do this until I wasn't horny anymore so maybe I could concentrate.

It was about 2 months later I noticed that my penis seemed to feel slightly different, like structurally it was curved just a hair to the side. My penis would probably have seemed normal to any girl at the time (had I been having sex), but I could tell a difference. There is at least one website which strongly condemns this form of masturbation and claims that it is damaging.

Is there a connection between my episode (and taking Propecia and MSM and glucosamine) and my Peyronie's? Who knows? One can only speculate. But if there is, it has certainly changed my life.

If there is anyone who respected me on this forum who now no longer does, I certainly don't blame you.

[Kimo]

Jack,,,,,,I don't know how anyone could think less of you,,,,you have opened up and shared your experience...I too did such things when a young teenager,,,used to see how many times i could masturbate in one day,,i think it was maybe close to you, 6 or 8 times in one day...I was doing it so much that one day after a few episodes i shot a big blood clot and it scared me to death,,,i eased up for awhile and then went back to it,,,,sounds crazy but i was so horny and always have been and still am at 63.....I just don't get to expell as much any more..
I understand where you are coming from and don't think any less of you....we all have things that we have done and would never point a finger at you or anyone else..Thanks for sharing..

I believe that if we as men would talk more to the younger men and educate them to be more careful with there penis's there might be less injuries...This is just my thoughts and experiences...

Kimo

[jackisback]

Thanks Kimo, I appreciate it. The thing is, of course nobody wants to have Peyronie's......but if I've got to have it, I'd sure rather be able to say it happened after having a beautiful broad bouncing up and down on me than from humping the carpet! haha!

And yes, I do agree with you on educating the young on this. The day I did this, I actually thought to myself I wanted to do this until I caused damage. It was just a crazy sexualized thought, I did not really believe damage was possible or plausible. The problem is that warning kids about that sounds like the old hysteria of trying to guilt and scare kids into not masturbating. I think that this warning should be emphasized to the young in sex ed (i'm sure if i'd heard it even in 6th grade sex ed, it's the kind of thing that would have stuck with me forever) in a rational manner, but I think it will be a long time before such an idea will be implemented.

[Tim468]

I really really really want to make a joke about humping carpet...

But I have done so many dumb-ass things with my dick during my life that it would be silly to judge someone else.

Horny teenage boys do some pretty dumb stuff (read "Portnoy's Complaint" about him screwing the family's dinner meal if you want a perfect example).

For the most part, we get away with it without an injury or without damaging ourselves. Sometimes we are not lucky that way. But, to me, it is like thinking a guy who got HIV from sex is "bad" and a guy who got it from a blood transfusion is "good" - it's pointless. It doesn't help anything.

Perhaps if I could "identify" something I did, I could blame myself for years, constantly angry at myself for being "stupid" and berating myself for all my problems. So, I guess I am lucky that it just showed up one day after a summer in Alaska. I never knew why, but at least I don't have to waste time blaming myself.

Tim

[alcohen]

Unfortunately, I am in that boat Tim.  I never in my life did anything dumb with my dick.  I only masterbated every couple days, never very vigorously.  After I was masterbated by my girlfriend twice, which was the only time I have ever been gotten off twice in one day, everything fell to crap.  I felt pain at the time, but did not know that it signaled the beginning of the nightmare I now call my life.  I waste all my time just wishing I could go back and go to sleep early or something.  And I love my girlfriend more than anything and know that she did not mean for me to get hurt...

But there is something that affects me psychologically on a very deep level to know that every day I will have severe pain while I walk around.  To know that when I look at myself in the mirror I will see something disgusting.  And to know that if I tried to, I WOULD NOT BE ABLE TO HAVE SEX.  It is not possible for me to give my girlfriend, who is a virgin, that experience.  I can't even masterbate anymore.  Everything in my life has been completely stripped away.  

Everything related to nerves with my penis is completely numb and I get no pleasure from anything involving it.  I don't want an implant because I know that if I can't feel anything now, I definitely won't be able to feel anything then.  

I envy those of you with extreme curvatures that are still able to become hard enough to have sex and are able to experience any amount of pleasure at all out of sexual activity.  I have zero pleasure and nonstop wet dreams.  

 

[George999]

alcohen,  Just a question.  Have you ever been seen by a really top notch specialist in Peyronie's or Sexual Medicine?  I really think the right doctor *might* be able to sort some of this out.  The loss of feeling is really baffling and extremely rare for a young person like yourself.  In any case, the really good news is that we live in a time when medical technology is moving extremely fast.  When I was your age, I had a urological problem supposedly without a cure.  By the time I was in my early thirties, I just happened on a doctor who referred me to someone who fixed the unfixable.  I'm telling you this to encourage you to try to chill out a bit and have hope that somewhere out there, there is help for you and at some point you will find it.  I know its not easy.  I have been in a similar situation.  But depression doesn't get you any closer to a solution and reasoned optimism often can.  I wish you the best!  - George

[newguy]

Alcohen - Don't give up hope. Whatever your current situation, with time and the use of therapies detailed on this site, there is a chance that you will see improevments. As George states, medical technology in this area is gaining pace, and as such what currently seems like a hopeless situation to you, may in time become a more hopeful one. Your case sounds somewhat different from the average case here, so I would urge you to look into seeking advice from someone skills in this field

George (and co) - Continuing with the theme of the diversity of peyronie's cases, on occasion some people appear to develop a curve just days after a sexual injury, others over a year after an injury. If peyronie's is a problem due to scarring caused by an escalating inflammatory response, how do these two different scenarios fit into that?

[jackisback]

Hell, there were two months in between this happening and my first symptoms, and for those two months, I certainly didn't do anything crazy or strenuous in that regard, so for all I know, there's no connection.

But on the level of suggesting literature, I suggest Chuck Palahniuk's (of Fight Club fame) short story "Guts", readily available on the internet.

newguy: i think if it's a year after an injury doesn't that make it pretty debatable whether the injury was the cause or not? Shortly before getting Peyronie's I tried to get prescribed Avodart for hair loss which can be more effective than Propecia, but also has a longer half life and more sexual side effects (both drugs are for enlarged prostate, Proprecia in a higher dosage under a different name). Had I been prescribed this, I'm sure I would have blamed my Peyronie's on it. I think unless you have a sudden, sharply painful injury, it's difficult to assign blame.

[newguy]

newguy: i think if it's a year after an injury doesn't that make it pretty debatable whether the injury was the cause or not? Shortly before getting Peyronie's I tried to get prescribed Avodart for hair loss which can be more effective than Propecia, but also has a longer half life and more sexual side effects (both drugs are for enlarged prostate, Proprecia in a higher dosage under a different name). Had I been prescribed this, I'm sure I would have blamed my Peyronie's on it. I think unless you have a sudden, sharply painful injury, it's difficult to assign blame.

I only thought of mentioning it because, when reading through peoples strories on here a number of people appear to have experienced actual physical changes many, many after their initial injury. There appears to be no set pattern as such in that some people (perhaps most) feel pain and then develop a curve as this pain diminishes or stops, however others develop a curve and there is still pain. Of course, many do not feel pain at all, but its likely that some traumatic occurence has set events into actual. I guess it's summed up by saying that everybody is different. It just surprises me how different.

Personally, with more men using the likes of propecia, avodart and other male only drugs like viagra, I think there may be a feeling that the drugs are linked with medical problems that occur in conjunction with them. I'm not convinved that these drugs can be blamed for peyronie's though as I think, due to the vast number of people taking them, we'd be hearing a lot more about this. That's not to say that they can't contribute in a negative sense to a persons health in any particular area, but I would be wary of attributing blame. So in essence I agree with you. I think we try to assign blame to x,y,z, but research does suggest that there is a strong link between trauma and peyronie's.

Question)  I'm interested in members opinions of how the length of time a pain exists can contribute to the severity of peyronie's. Let's say someone has a pain for a few days and later develops a curve and/or wasting. Would it be safe to assume that this person would be less affected by peyronie's than someone suffering from pain for 6 months before any physical symtoms, or do you not feel that there is any correlation between pain duration and eventual appearance?

[Tim468]

alcohen,

The symptoms that you describe do not make sense to me.

Wet dreams? Do you have an erection and ejaculate during the dreams? That is what a wet dream means.

Some of what you are describing sounds like "anhedonia" which is a problem that is located between your ears and is a symptom of depression. But it can contribute ENORMOUSLY to the problems of erectile dysfunction and sensation.

Finally, masturbating twice in one day with your girlfriend does not sound like enough anything to attribute that to causing your problem.

I agree with George that you need to go to a top notch specialist and get help.

Tim

[alcohen]

Thanks for the replies.  I will continue to hold out hope for things in the future...  Everything is just incredibly frustrating.  When I mentioned wet dreams, I was referring to a post I made on here about a week ago in another thread.  I wrote about that I am constantly having wet dreams (erections and ejaculating during my dreams).  Ever since I hit puberty, if I didn't masterbate for 4 or 5 days straight for whatever reason I would have a wet dream.  I always assumed it was from pent up sexual desire.  Sure enough, if I masterbated on a daily basis or even once every 3 days I would never have a wet dream.  Now, due to not being able to masterbate or have my girlfriend pleasure me at all because of no sensation and pain I keep having wet dreams.  It is not fun.  

For those who have followed my symptoms since the beginning, I had the first problems after being masterbated twice four months ago.  The following morning I had swelling, blood under skin, and bumps near the bottom of my shaft.  I went to the doctor who misdiagnosed me with herpes, yadda yadda two urologists who told me it was all in my head later including one who gave me Cialis and upon taking had pain with my erection and immediate loss of it and here I am waiting to return to my current uro to have a blood doppler ultrasound done.  It is scheduled for December 29th but I am trying to get it done sooner either by his office (UNC Hospital) or someone else.  That last sentence was making a very long story short.  

But I had the inflammation, the reduced inflammation, an obvious shortening of my penis, loss of sensation, emergence of cord looking mounds that do not move with my skin, nodules up near the top, mounds on the underside of my penis and obvious scarring on the skin itself where a mound on the left of my penis is.  All these things come and go during the day in addition to the hourglass-like indentations.  Everything is maddening because it keeps coming and going.  My penis used to point diagonally upwards (not curved at all) but it not points outward and down.  I am assuming this is because the biggest mass is on the underside of my penis.  It is especially prominent near the top of my shaft on the underside.  This is where I used to have the most feeling sexually but it now feels as if my nerves are being blocked by whatever is in there.  There is a mass on the left of my penis and it curves to the left at that location.  This particular curvature differs the most on a daily basis.  Some days none at all, some days there definitely is some and the area feels hot.  Perhaps some inflammation still at work.  

Thank you for all the helpful words.  It is just really hard to concentrate on anything in my life with such a horrible problem...  

[newguy]

Thanks for the replies.  I will continue to hold out hope for things in the future...  Everything is just incredibly frustrating.

Your case sounds quite unique, and though I don't always suggest that people keep constant medical opinion, it seems to me like the more opinions you can get on this the better. It is perhaps encouraging that on certain days there is less curvature than on others. Whatever the case, your condition appeares to be very active and as such, further investigation, possibly followed by use of pentox and so on would be my advice.

[George999]

alcohen,  The key to this issue might just be to investigate the neurology side of the equation.  I mostly agree with Tim on this.  Wet dreams pretty well test everything out.  BUT, if I am not mistaken, wet dreams do not test out the functioning of the key nerves that deliver stimulation from the penis to the brain.  If you have abnormal sensation in your penis, you should be getting checked out by a sexual medicine doctor or perhaps even a neurologist.  A major headache for people with conditions as rare as yours is, and yours IS rare, is that physicians condition their diagnoses on the expectation of more common problems.  The possibility of a rare condition often does not really cross a physician's mind during the examination and it is really frustrating for the patient as the physician tries to exhaust all the other possibilities and sometimes misses what should be obvious.  - George

[wayne999]

i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

despise: Are you still around? I'm interested to hear more about your situation because it is similar to mine, i think.

The internet tells me that this lying down masturbation can lead to something called "TMS" i.e. Traumatic Masturbatory Syndrome. You can google it up and find out more, but it seems to not have much scientific backing. To me, it seems logical though that lying on a bed or carpet and masturbating would be bending the penis in a non-normal way, which in SOME people would cause damage. I'm not sure if this damage would result in scar tissue, or something else - in my own case I cannot feel any nodules/plaques on the underside of my unit but i have a downward curve.

I've found some accounts of people online talking about masturbating in this fashion and having curvature....however some sites say that 5% of all men have masturbated like this and it seems that curvature isn't an issue for them?

Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position"    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)  

[Gregory]

I developed Peyronies Disease after prostate surgery.  I had no erections for six months and was put on trimix.  First few shots were fine but by the third shot I noticed a curve.  By the sixth shot I had a 90 degree curve upwards.  Doctor assures me that the trimix injections did not cause my Peyronies Disease.  I'm just wondering what is the incidence of Peyronies Disease in men using trimix.  Anybody have any idea how I can get this information?

Greg

[Old Man]

Gregory:


Welcome to the forum!!

WOW, what a trip for you after prostate surgery. The surgery was bad enough only to "get" Peyronies Disease afterwards. However, you are no alone with this symptom after prostate surgery. The basic same thing happened to me after a radical prostatectomy in April 1995. No erections for months afterwards, trimix and other injections for ED with no results, resulting in curves, nodules and plaque. After everything failed, my uro RXd the VED for me.

It took about another 6 months on the VED therapy to "cure" that bout of Peyronies Disease. My results came out all right with after effects from that bout. If you will open the VED thread on the Child Boards link on the Home Page of this forum, you will find much information about VED usage. In addition, read all the threads on that board that are of interest to you. There is much info there in a condensed posting order so that you don't have to search through all the topics to find any particular subject matter.

Sorry to hear that you have joined the Peyronies Disease club, but the same thing has happened to many guys. IMHO, I believe that during surgery your penis may have been damaged in some way. I know that my uro admitted that they had to "handle" me quite severely down there since my prostate was so large and my stomach cavity is rather small, so who knows.

Let us know if there is anything any of us on the forum can help with, so feel free to do so.

Old Man

[Hawk]

I attribute my Peyronies Disease to Bimix injections following a laproscopic prostatectomy.  I took bimix injections 2 times a week for 8 months.  If you read my entry in the topic titled "Our Histories"  you will read the entire account.

[Gregory]

Thanks for the nice welcome, guys.

As I said, the doctor assured me that my Peyronies Disease was not caused by the trimix injections.  What troubles me is that the first two injections of the trimix resulted in a perfectly straight erection and long and full just like I was before surgery.  Doc says keep injecting.  If Peyronies Disease was not caused by the trimix, then fine, I'll keep injecting.  But if the cause was the trimix, then will continued use prevent the Peyronies Disease from getting any better.  BTW, I just finished my first series of six verapamil injections with no noticable improvement.

What I want to know is how many men using trimix or bimix have or have not develeoped Peyronies Disease. And of those who did, how many were using the injections to achieve erections on account of prostate surgery.

Greg

[George999]

I want to once again point out that in a general sense, penile injections are safe.  If they were not, they would never have gotten past the FDA testing stage required for approval.  HOWEVER, they are likely NOT safe for anyone who may be vulnerable to Peyronie's.  Therefore, while the urologist may be correct in stating that the injection(s) did not CAUSE the Peyronie's, what they are not telling you is that the injection(s) may have TRIGGERED the Peyronie's.  So if injections were FOLLOWED by Peyronie's, I certainly would not keep on injecting.  I WOULD begin to try to deal with the Peyronie's through whatever strategies work for me.   Just my two cents on this issue!  - George

[Old Man]

The following is just my 2 cents worth of knowledge based on my experience along with many others that I have worked with in counseling work with the ACS and the US TOO Prostate Cancer support group.

I know of no case of Peyronies Disease in the above work, that did not result after penile injections. Each and every case of Peyronies Disease that I have worked with in those groups developed Peyronies Disease after the injections whether or not it was for tests for ED or Peyronies Disease with verapamil. The Caverject injections for ED therapy caused my Peyronies Disease to develop once again after having gotten rid it earlier.

My advice to any and all before getting penile injections of any kind should consider all the angles and ask questions prior to having them done. There is just too history of Peyronies Disease developing from these injections to overlook the fact that Peyronies Disease does occur after getting the shots. More and more guys seem to be prone to Peyronies Disease than ever before for whatever reason.

The above is submitted for information to any and all considering penile injections for any purpose.

Old Man

[Gregory]

Thanks, George and Old Man,

I was hoping that wasn't the answer to my question but deep down that is what I expected.  So, not all men develop Peyronies Disease because of penile injections, but if you are predisposed to Peyronies Disease, the injections will likely tigger it.  Why can't the doctors tell us this?  However, even if told of the risk, I probably would have opted for the injections to get an erection.  I should have stopped at the third injection when I could see a that I was starting to curve.  But, it was probably too late by then.

I'll keep my fingers crossed for successful Xiaflex trial results.

Greg

[Old Man]

Gregory:

Remember that you can always fall back on the VED for erections. That has been my weapon of choice since a radical prostastectomy way back in 1995. The Trimix injections gave me Peyronies Disease symptoms with each and every one so they were DCd.

Even the ED pills were of no value for me due to very serious side effects and did not produce erections firm enough for good sex. Anyway, all is not lost because you can achieve erections in other ways than the injections.

Old Man

[wayne999]

i know for a certain fact that my peyrnoie's disease was caused by over masterbation. people say masterbating is limitless but here my side of the story. i started getting off by humping the carpet of my old home when i was in kindergarden. doing that everyday untill i learned how to masterbate with my head. now im 17 and i have peyrnoie's disease the penis can only handle so much.

despise: Are you still around? I'm interested to hear more about your situation because it is similar to mine, i think.

The internet tells me that this lying down masturbation can lead to something called "TMS" i.e. Traumatic Masturbatory Syndrome. You can google it up and find out more, but it seems to not have much scientific backing. To me, it seems logical though that lying on a bed or carpet and masturbating would be bending the penis in a non-normal way, which in SOME people would cause damage. I'm not sure if this damage would result in scar tissue, or something else - in my own case I cannot feel any nodules/plaques on the underside of my unit but i have a downward curve.

I've found some accounts of people online talking about masturbating in this fashion and having curvature....however some sites say that 5% of all men have masturbated like this and it seems that curvature isn't an issue for them?

Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position"    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)

Let no question go unanswered folks. Any takers?

[Tim468]

>>Because i've never had intercourse, i would also like to ask people if they could comment on this quote i pulled from another forum: "Look at it this way: in the most standard sexual position (missionary), you're in a face-down and prone position" Huh    In such a position, wouldn't you be bending near the base of the penis? (to almost 90 degree if you are literally lying on your partner ??!)<<

Um, the penis does not go straight up - if it is a really standup kind of erection, when hard it sticks out at about a 60 degree angle upwards. If it is not as hard, it takes one finger to lift it up to about that angle.

When you lie down on a woman to make love, your penis does not stick out at a 90 degree angle - instead it angles up at an about 60 angle, which is about right for the angulation of her vagina which does not go straight up inside her (if she were standing up) but instead agles back at - are you ready for this? - a 60 degree angle.

We were designed for sex, and then we were designed with some flexibility so we can do it in all sorts of ways.

A picture might help... experience will help more.

Tim

[gerald]

Has anyone besides me come down with Peyronie's after taking Metoprolol (Beta Blocker)?  I had no symtoms prior to the medication.  I then had a bypass and left the hospital with full-blown Peyronies.

Gerald - ghinin@verizon.net

[Dusty Letha]

Hi....

      Peyronie's disease, a condition of uncertain cause, is characterized by a plaque, or hard lump, that forms on the penis. The plaque develops on the upper .....
Hard lump on the penis often causing bending. More detailed information about the symptoms, causes, and treatments of Peyronie's disease is available below.

   * Penis inflammation
   * Penis scar
   * Penis lump
   * Bent penis
   * Painful erections  

[Tim468]

Dear Dusty Letha,

Please do not spam here with a link to a skin care products site as if that has something to do with Peyronie's Disease.

Tim

[bluth]

I was wondering how many others out there took Glucosamine/Chondrotin before developing Peyronies Disease? I was thinking of a connection between these drugs and Peyronies Disease and just recently saw that someone started a thread with a poll about this exact issue.

Maybe they are connected?  

[George999]

bluth,  Peyronies Disease results from a fundamental metabolic imbalance in the body.  If a person is experiencing that imbalance, there are all kinds of things that can trigger Peyronies.  This is also true with a number of other mysterious diseases.  In my case, Peyronies was definitely linked to Metoprolol, a  common cardio drug.  But trying to identify these triggers is an exercise in futility.  What difference do they really make?  How will that information help us now?  Rather, the goal has to be in curing the underlying metabolic imbalance and things like healthy nutrient rich, calorie starved diet, frequent and appropriate exercise, and sufficient exposure to full sunlight are the keys to dealing with that imbalance and the autoimmune linked systemic inflammation it promotes.  - George

[jackisback]

why do you say a "calorie-starved" diet, George?  don't you think a high calorie diet is fine as long as it is healthy, and you exercise and you need the calories b/c you are an ectomorph like me?

[George999]

Jack,  If one is eating only healthy foods, their diet will be calorie starved.  Those kinds of foods that are often referred to by the phrase "empty calories" are exactly the problem.  Research is showing that they are the source of much of the metabolic dysfuntion that most of the population is experiencing and, along with vitamin D insufficiency are fueling the epidemic of chronic disease in the US and in the world at large.  A recent study demonstrated that overweight 10 year olds have arteries that are exhibiting the deterioration typically found in 40 year olds.  Thats how the wrong kinds of foods can wreak destruction on the body.  And your body type really doesn't matter that much.  After all, there are very normal weight people that have heart attacks, strokes and other serious health problems at a relatively young age.  Of course, add weight in the body core makes the risk a whole lot higher.   But I certainly would not rest easy on the fact of not having a weight problem.  Does this mean one can not enjoy apple pie and ice cream occasionally?  Certainly not!  But the benefits of a healthy diet as a pattern are beyond measure.  The reality is, the fewer calories you consume, the better your health will be.  And that doesn't mean you need to be anorexic, of course, you just need to eat sensibly.  - George

[The solver]

This will be a lengthy post, please bear with me.

I will posit that the development of Peyronies is a response to high sugar diets and offer a potential new avenue of exploration.  

I am not a doctor and I am just saying it as I see it now. I have a lot of education about certain things in the human body because of my other conditions.

My background is quite important to see where I am coming from:

Age 0-29: Normal person, no known health concerns
Age 30: Diagnosed type 1 diabetic
Age 35: Erectile dysfunction
Age 36: Peyronies disease

First I want to note that I now have a number of known autoimmune diseases. Diabetes is one, thyroid is another. Peyronies may be another. This is important. Bear in mind that diabetics have a much much higher degree of Peyronies than other population groups. This is key.

Second, I see more doctors than anyone else I know. As a diabetic, I am observed regularly by kidney, eye, liver specialists. This gives me a certain insight into blood sugar from food intake and its effects on the body

Diabetes is an autoimmune disease and is degenerative. The reason I see so many specialists is because uncontrolled blood sugar (but really we are talking high blood sugars) is very, very bad for you. It can affect your eyes, your kidneys, your liver and, I believe, your penis.

Some of you will be thinking, I don't have diabetes, move on. I say hold on. I didn't have diabetes, I developed it. Sounds familiar right? Yep, same with Peyronies

Why is it degenerative? Because my pancreas now produces no insulin which should regulate glucose (the sugar in our blood). Glucose is the energy that powers our cells. Why do we regulate glucose? Because it feeds your cells. What happens if you have too much glucose? It burns your cells up. What the hell has this to do with you?

Here is my take: we eat a lot of processed food that is high in sugar. Pizza, pasta, breakfast cereal, breads without grains. So we are nearly all eating high sugar foods. The body is under strain. Many people will become diabetics later in life because of this – it's called type 2. It's because your body cannot keep fighting the excess amount of sugar it is being fed. This is especially true in fat people because there are a lot more cells relative to the pancreas to deal with.

The excess sugar is processed by the kidneys through the urethra and out of the penis. My thinking is that just like a riverbed, some of the crap is deposited on the side and on the bed.
From this, we all become more susceptible to developing peyronies. I have a suspicion that the factors are then there for Peyronies to be triggered – some people point to masturbation or using Viagra. I think that it is secondary. I also note that a lot of people point to surgery that again follows this chain of events in that it is linked to the pathways between the kidney and the penis. Again, this is the same situation with alcoholism, the excess garbage has to filter down the little urethra tubes and out of the penis. To me these are all interconnected.

Ok, so far so good. Now what? Obviously I don't know. I have just been confirmed with my Peyronies Disease diagnosis. My urologist told me there was nothing to do and to delay surgery for as long as I can. Thanks. I see a million different approaches on here using drugs I have never heard of before. I already take insulin, something to keep my liver functioning, something to delay the kidney transplants, something for my thyroid. And this is before considering anything for Peyronies!

But I did see something and it excites me. Both for all of the above issues and Peyronies.
This is the link and the full text from the BBC website:

http://news.bbc.co.uk/2/hi/health/6935482.stm

Diabetes problems 'vitamin link'

A simple vitamin deficiency may be the cause of many of the side effects of diabetes, a study suggests.

Researchers found people with the disease expelled thiamine - vitamin B1 - from their bodies at 15 times the normal rate in a study of 94 people. The Warwick University team said thiamine helped ward off complications such as heart disease and eye problems, the Diabetologia journal said. Experts said diet supplements could potentially help people with diabetes. It is the first time a deficiency of the vitamin, which is found in meat, yeast and grains, has been identified in people with diabetes. It has been missed in the past because of the way thiamine levels were measured.
Traditionally, the activity of an enzyme called transketolase in red blood cells has been used to indicate thiamine levels. But the researchers found that increased activity - usually a sign of high thiamine levels - was also associated with the body's response to deficiency.

Instead, the team measured thiamine levels in blood plasma and found concentrations were 76% lower in people with type 1 diabetes and 75% lower in people with type 2. Thiamine is key to warding off vascular problems such as kidney, retina and nerve damage as well as heart disease and stroke. It works by helping protect cells against the effect of high glucose levels.
Trials are now being carried out to see if supplementing diet with thiamine could return levels to normal. Diets Lead researcher Professor Paul Thornalley said: "It is early days, but it could have a huge difference.

"Supplementing diets could be an effective way of minimising the risk of these complications." Matt Hunt, of Diabetes UK, which helped to fund the study, said more research was needed. But he added: "The study could potentially have very exciting outcomes. "Around 80% of people with diabetes die of cardiovascular disease and diabetes is the leading cause of blindness in the UK's working age population. "Therefore, any research that could help must be looked at seriously."  

So here is the thing that makes it click for me. Diabetics have a much higher incidence of Peyronies. Diabetics have manifest blood sugar control issues. I suspect that non-diabetics have latent blood sugar issues that they are not aware of and are not looking for. Remember I used to eat bowls of pasta without having to work out how much sugar there was in it. The bad stuff flows from your kidneys through your penis. Now we have a new study that reveals that diabetics expel thiamine at a rate much much higher than the rest of the population. 15 times as much. So diabetics have a much higher rate of peyronies and they get rid of something useful 15 times as often. Hmmm. Diabetics with high blood sugar need to pee a lot more often than others. It's because your cells heat up, your body heats up, you get thirsty, you drink, you pee. You get rid of lots of useful nutrients and minerals. That seems to include Thiamine B1 to me. This study has only been published. It would be interesting to find out if the patients in the study had ED and whether this helped. I will follow up on that one, don't worry.

Ok, I've overtyped this  I'm tired now. I know there is no medical evidence here, merely a mosaic theory with an unlikely savior. But the theory ties up a lot of loose ends that I have been reading on this forum in my mind. There are several causes and effects that seem to be fairly connected. Whether having more thiamine does anything whatsoever to alleviate this is an entirely different thing, but still..

Just for the record, I went out and bought a pack of 300mg pills of Thiamine B1 yesterday. I will let you know if I see any improvement. I am not aware of anyone else doing this. It could all be barmy, it might just work. I hope it brings something new to the debate anyway. I think it probably chimes with some and not with others. Will gladly discuss any of this. I want to reiterate that there are a great many things that I do not understand at this point, but will elaborate on what I do know. Plus, seeing as I have an army of doctors at my disposal and I have absolutely no hang ups about discussing any of my varied problems with them, I can always ask them and find out!

Cheers

[Hitman]

I think from a dietary perspective IF can help with the ongoing inflammation

[Hawk]

Solver, Thanks for the post.

I think many here would agree on much of your basic premise.  Blood sugar is a suspected culprit for many reasons.  The mechanisms are not completely understood however and I don't think the answer is a simplistic one.  The one area I personally disagree with is the notion that the effect on the penis has anything to do with transport and deposit by way of urine through the urethra.  While the urethra has a close proximity to the penile tissue it is furthest removed in the penis from the tissue most frequently affected. I do not think the river bank analogy holds water  (couldn't resist the pun).

I am pretty sure that the culprit is the chemistry of the blood that nourishes the penis, eyes, kidneys, heart, etc. and that the transport is the arterial flow of blood to the penis (and the lack of of blood flow).  While your post was well thought out and quite good on deductive reasoning for a single person, some of these thoughts are not new to the forum.

There are many things you may find interesting.  here are two.

https://www.peyroniesforum.net/index.php/topic,65.0.html (read the thread and click on the link in the first post in the thread of this topic)

This may seem a bit less relevant to your post but still interesting.
https://www.peyroniesforum.net/index.php/topic,130.0.html

[George999]

Solver,  I believe that you are on to precisely one half of the problem.  I assert that Peyronie's, along with a number of other chronic diseases, is the product of a confluence of two root issues.

1)  SUGAR!  Sugar is indeed a HUGE problem.  EVERYTHING in the contemporary food chain is laced with it.  The absolute maximum safe level of sugar consumption is 15g per day.  We all need a certain level of fruit and vegetable intake daily.  Fruits and vegetables contain sugar.  That alone is nearly enough to fill the 15g per day allotment.  On top of this we all need an adequate amount of carbs.  But most carbs we find in the grocery store are UNNATURALLY laced with sugar.  And then there are the "healthy" non-carb foods like yogurt.  Check the label!  Loaded with sugar.  And this doesn't even take into account things like potatoes that contain a lot of starch that quickly converts to sugar in the body.  And add to that the record levels of sweetened beverages that people are consuming these days.  Our bodies become overloaded with sugar.  Our visceral omental fat proliferates.  And our bodies are poisoned as the ever enlarging omentum pumps out toxins.  The damage from sugar is EPIDEMIC in our world today!  Type 1 diabetes occurs because the Pancreas is no longer able to produce insulin.  Type 2 diabetes occurs because the Pancreas is no longer able to make EFFECTIVE insulin.  For the best low down on sugar, and what it is doing to your body, see the jorge cruise website and download the FREE "Belly Fat Cure".  Sugar is without a doubt a major Peyronie's factor.  I am personally following through on the sugar issue on a long term basis.  Since contracting Peyronie's four years ago, I have been attacking sugar and have lowered my weight from 195lbs to 155lbs.  I am now planning to target the 15g level and bring my weight down to as close to 135lbs as possible.

2)  Vitamin D.  I am equally convinced that vitamin D deficiency is the second major contributor to Peyronie's.  Surveys are finding fully 50% of the population deficient in terms of older guidelines that are now being exposed as being way to low.  This would indicate that the vast majority of the population is perilously deficient in vitamin D.  It is vitamin D that is key to preventing autoimmune reactions and this is the very thing that too much sugar promotes.  These two factors are driving in push-pull fashion the current epidemic of chronic disease.  Optimal blood levels of vitamin D are 50ng/ml.  Allowing blood levels to go below that point puts your health at risk.  For more information on this read:  Vitamin D Experts' "Call to Action", Low Vitamin D Levels Pose a Large Threat to Health and Healthcare Professionals Ignore Vitamin D Deficiency Epidemic.  Vitamin D affects hormones and genetics, lack of it has dire effects on health.  Some studies are indicating that it take fully five years of optimal levels to complete DNA repair after a long term deficiency.  A few months ago, after contracting yet another autoimmune related problem, I began to really dig into the vitamin D issue and radically increased my intake of vitamin D.  I got myself screened for serum calcium problems that can sometimes complicate higher vitamin D intake.  And I began to make use of regular exposure to UVB light to further increase vitamin D levels.  All this is paying off for me in achieving months of systematic regression of Peyronie's symptoms.

Before discovering the vitamin D issue, I was taking LOTS of vitamin B1 in the form of Benfotiamine and getting nowhere.  I suspect the problem is that if your body is unnaturally dumping B1, just consuming more of it is only going to result in your body dumping more of it out.  The vitamin B1 problem is not the root of the problem, but just a link in the chain.  When the sugar and vitamin D issues are brought into balance, I suspect the vitamin B1 issue will work itself out on its own.  That notwithstanding, I do confess that I am currently taking a daily B-100 complex supplement.  And of course, as most around here know, I am also taking Pentoxifylline which I believe to be the number one Peyronie's oral treatment available today.  - George

[hornman]

George,

Could you be more specific as to how your symptoms are regressing since you started your Vitamin D supplementation?  Less pain?  Less plaque?  Less Bend?

I too am trying to keep my sugar intake below 15g.  Not soo easy.  Even an orange has 17g!

Thanks!

[Hawk]

I intuitively find it difficult to believe that we are not intended to eat fruit.  To do so deprives the body of some of the most critical antioxidants necessary for good health.  I think the key is more buffering reasonable sugar intake with proteins and good fats.  You do this by preceding the sugar with the fats and proteins that slow its absorptions and reduces any sugar or insulin spikes. Are oranges and bananas dropped on an empty stomach bad?  Probably.

Are oranges and berries bad in general?  Doubtful!  

[George999]

As with everything else, the problem is not fruit, the problem is the amount and the type of fruit.  Some fruit contains far more free sugar than others and must be consumed in moderation.  I used to believe as Hawk does, but now I have doubts.  Previously I have buffered not only with proteins and fats, but also with more exotic stuff like cinnamon and banaba.  Fruits have BOTH buffered sugars in the form of complex carbs AND free sugars in the form of fructose.  I am now practicing the 15g guideline to the best of my ability and my belly is shrinking as a result.  There is sufficient research out there to demonstrate a direct link between circumference of the belly at the waist and levels of systemic inflammation.  Indeed it is not easy to achieve the 15g target, but I have confidence that the closer I can get to it, the more dividends it will pay both in terms of Peyronie's and in terms of overall health.  And to be more specific, with the sugar strategy, vitamin D and Pentox, I have had zero pain, steadily shrinking nodules and some perceived straightening.  The bigger thing for me is that this is the first time in over four years that I have achieved an uninterrupted positive progression for this duration of time.  Before the nodules would vary in size over days and even hours.  That is not happening any more.  My penis is becoming steadily softer and more supple.  For me this has been a major achievement and one that I wanted to share.  - George

PS -  A major problem we have, especially in America, is to recognize what a serving size is.  Serving sizes are VERY small.  Most Americans typically eat triple and quadruple servings of everything and aren't even aware of it.

[Hawk]

Well the skeptic in me rises again.  Regardless of your creation view, man or at least the society he lived in, evolved eating fruits.  When they were ripe, they ate them in quantities, often with no fats or proteins in the same sitting.

I probably consumed less sugar than about 85% of the population and less unbuffered sugar than 95% of the population when I developed Peyronies Disease.  If sugar is a major causative factor in Peyronies Disease we would see the bulk of the population with Peyronies Disease.  There is a huge difference in saying typical quantities of unbuffered sugar is not good for the body and may aggravate Peyronies Disease and suggesting the equivalent of 2 servings of fruit in a day exceeds the sugar intake a person should have.

In the same sense that injury is not a cause of Peyronies Disease but rather a trigger if other conditions are present, no one can produce evidence sugar is a cause of Peyronies Disease.  To the contrary, the rampant sugar intake and the limited Peyronies Disease incidence suggest the opposite.  The fact that many men other than me have developed Peyronies Disease who are far below the norm in sugar intake adds even more weight to this opposite view.

There are many men with ripped abs that make a point to consume significant sugar in connection with workouts just like many lean runners that train based on carbo-loading.  Most of those carbs would not qualify as complex locked sugars.

I think the suggestion that a normal person needs anything like <15 g of sugar a day is radical and unsupported.