Causes of Peyronie's Disease

[chilton]

Hi, thanks for sharing with me some good informations. I am very glad to know about causes of Peyronie's Disease, it is very useful to me.


Thanks

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[didi20031]

newguy, I started taking pentox very early (approx. 3-4 months) after I had noticed the first changes in my penis and I never stopped taking it.

[newguy]

didi20031 - Did the plaques resolves within 3-6 months, before you started taking pentox? i'd definitely stick with it. It's a shame that you experience further bouts, but maybe a common oral routine (pentox, l-arginine, viagra/cialis..vitamin d, maybe pycnogenol too) combined with gentle VED use can help you to avoid or lessen the extent that this condition troubles you. It's positive thast you're doing something to keep on top of this.

[didi20031]

@BrooksBro
thanks! It's only that I found your post a little "shocking". I am 35 and I still hope that there is something like a future with an nice partner for me!

@newguy
Let's hope so!! peyronie's and ledderhose is really enough for me to deal with!
my peyronie's is a neverending up and down story. plaques come and go (yes they do!) and so does pain and discomfort. However, even if the plaques go away they seem to leave some damage since my erections are less hard than they used to be  and my penis has lost a lot of its sensitivity.
I am into this for exactly two years now. I was hoping to enter the "stable phase" but I doubt that it exists in the meantime... yes, I am still on pentox. if it works or not? hard to say. as I mentioned, my plaques usually resolve after approx. 3-6 months. curvature is still minor and getting better at the moment. dents on the shaft have resolved (only the most recent one is visible at the moment) and only a minor loss of girth directly below the glans seems to be permanent up to now. maybe it's because of pentox, maybe it's the how peyronie's works in my special case...
even the erections change. there are periods when they are good (except for the glans which is permanently softer than in my pre-peyronies days) and periods when I am really in panic... I still don't know if it is in my head or if the peyronies is responsible for it. 

@George
I agree with you on the fact that it does not matter for us if it s one disease or 10. But for research it may have to be considered. After more than 200 years they still don't know what causes peyronies. There has to be a reason for that?!

[George999]

Didi, like many diseases, Peyronie's most likely results from a combination of factors which are different in different individuals.  As such, it is probably more a syndrome than a disease, but since the outward manifestations are the same or nearly the same, it all gets shoehorned into the same box.  Certainly a major component is inflammation of a sort that Pentoxifylline and the VED both address.  So there are common treatments.  Additionally, genetic damage and/or predispositions are also likely to play a major role which is why I advocate Vitamin D which is known to be a genetic regulator as well as being an anti-inflammatory.  So you can split hairs and say that it is really "many" diseases and not one, but you could probably do the same thing with everything from Metabolic Syndrome to Multiple Sclerosis.  - George

[newguy]

I thought my thread could have been an interesting basis for discussion. It is ignored instead...

I'd say that it's very unlikely that you'll suffer from all conditions associated with peyronie's disease. How's the condition of your peyronie's disease? Are you still taking pentox and has it helped with the slight curvature that you mentioned had appeared in April 2009?

[BrooksBro]

Not at all!  And, I sure hope NOT!  There is some common thread to all of them, that's all. 

so, you want to tell me that it is very likely that I will get all of these conditions???

[didi20031]

I thought my thread could have been an interesting basis for discussion. It is ignored instead...

[didi20031]

so, you want to tell me that it is very likely that I will get all of these conditions???

[BrooksBro]

Now that you have both Peyronie's and Lederhosen, Dupuytren's is also possible.  Then there is vitiligo, hypothyroidism, hypogonadism, and erectile dysfunction.  All these conditions are often found together, and all can be genetic.  I am not a doctor, nor have I ever portrayed one, except as a young child and with my wife (woo hoo!); I have all these conditions.

Thinking with my second brain, as long as I can achieve an erection and successfully engage in intercourse, these are tolerable.  Lederhosen does not affect my running, and Dupuytrens does not affect my daily activities.  Maintaining a minimal suntan covers up the vitiligo (for now).  The other conditions are significantly resolved with medication and physical therapy (VED & traction).

For me, until the day I trade this fragile body for an eternal one, coping with these conditions is preferred to diabetes, cancer, cardiovascular disease, and many other debilitating conditions. 

[didi20031]

hi!

I am wondering for I while now if what we all call "peyronies disease" is really the same thing in all the different cases described on this site. I seriously doubt it! Reading many of the threads and thinking about my own experience I have the impression that there are (at least!!) two different patterns:

1) peyronies after an injury. this seems to progress more or less in a way that is described as "classic" (active stage / chronic stage).

2) the more unpredictable form of peyronies seems to be that described by men who do not remember any injury (like me). In fact my problems started 2 years ago with pain during erections and a (at that time very small) lump near the head of my penis. Since that day I have observed lumps and pain coming and (some of them) going. I am still waiting for some kind of a stable phase in order to get back a (more or less) "normal" sex life...

One year ago I was diagnosed with M. Ledderhose (1 lump on my right foot) too.

So I feel that the second case is somehow more serious since the cause there seems to be an "error" in the "genetic program"?!

Just wanted to give my thoughts on this f*** disease. Please let me have your opinions about it. Maybe the MDs here on the forum can tell if my "theory" is worth being considered or if it's only stupid thoughts of a layman...

I wish you guys all the best!!!
didi

[George999]

Now years later, my neurologist did a rather complete protein scan on my blood.  That test shows ONE protein to be radically low.  That protein is Alpha 1 Globulin.

I received my blood test results for Alpha-1-Antitrypsin (from wiki, "Alpha 1-antitrypsin is the main enzyme of the alpha-globulin 1 region"). My level was 119 mg/dL, and the reference range is 90-200 mg/dL. FWIW. I should be getting the amino acid profile results soon too.

Interesting ... My suspicion is that we each have very different combinations of individual factors converging to make us vulnerable to Peyronie's.  Some are probably genetic, others related to age, others environmental.  - George

[slowandsteady]

Now years later, my neurologist did a rather complete protein scan on my blood.  That test shows ONE protein to be radically low.  That protein is Alpha 1 Globulin.

I received my blood test results for Alpha-1-Antitrypsin (from wiki, "Alpha 1-antitrypsin is the main enzyme of the alpha-globulin 1 region"). My level was 119 mg/dL, and the reference range is 90-200 mg/dL. FWIW. I should be getting the amino acid profile results soon too.

[snowydreams]

Since the penis originates from the base of the abdominal wall, it can't "point at it" - at most it can lie flat against it.

I meant the head of the penis and it is as you have described it.

I do not think that anyone would call a contracture of the suspensory ligaments at the dorsal base of the penis "Peyronie's Disease". I have not heard of that happening - but I suppose it could contract, leading to a more upwards angle, or even coming to lie flat against the belly if that happened.

It seems more likely that there was a scarring of the tunica on the dorsum of the penis leading to an increased upwards angulation - perhaps even located deep to the small (or sometimes not so small) layer of fat just above the penis.

Thanks for the reponse.

[Tim468]

Since the penis originates from the base of the abdominal wall, it can't "point at it" - at most it can lie flat against it.

If there is any dorsal curve to the penis, though, it can curve up and back towards the abdomen - certainly.

I do not think that anyone would call a contracture of the suspensory ligaments at the dorsal base of the penis "Peyronie's Disease". I have not heard of that happening - but I suppose it could contract, leading to a more upwards angle, or even coming to lie flat against the belly if that happened.

It seems more likely that there was a scarring of the tunica on the dorsum of the penis leading to an increased upwards angulation - perhaps even located deep to the small (or sometimes not so small) layer of fat just above the penis.

Tim

[snowydreams]

nowydreams,
It has been well documented that Peyronies Disease is a condition of scaring or scar tissue on the tunica itself.

I'm not following your description of a problem dealing with the connective tissue that attaches the penis to the pubis. You reference a 90 degree angel which would imply your erection is pointing straight up and possibly flat against your abdomen. And then an additional 40 degree bend would mean your erection is pointing into your abdomen?HuhHuh

I meant 90 degrees skyward, not towards the abdomen, and that only after the problem began, did it the erection point towards the abdomen.

[lwillisjr]

snowydreams,
It has been well documented that Peyronies Disease is a condition of scaring or scar tissue on the tunica itself.

I'm not following your description of a problem dealing with the connective tissue that attaches the penis to the pubis. You reference a 90 degree angel which would imply your erection is pointing straight up and possibly flat against your abdomen. And then an additional 40 degree bend would mean your erection is pointing into your abdomen?

[snowydreams]

Is it possible that Peyronie's is just not a problem in the penis itself, but the connective tissue that connects and the penis to the pubis and tissue in the pubis?  When my Peyronie's symptoms first began, there was no curvature in the penis itself, but in the angle of the nocturnal erection(from a 90 degrees straight up to 40 degrees pointing towards the pelvis).  When I have mentioned this to the urologists I have seen, almost all of them denied this. 

[George999]

You know, I think that what we are looking at here is the very real possibility that there are indeed multiple things that can lead to Peyronie's and this could just be one of them.  At this point, since starting the heavy duty Vitamin D3 protocol, the protein levels have not declined any further.  My hope of course is that this will reverse via epigenetic effect of high D3 levels, but of course there is no guarantee of that.  Certainly they will hopefully not decline further.  I do find it a bit disconcerting that multiple doctors simply told me not to worry about it.  Also disconcerting, that one of them told me point blank that he was seeing more of this issue in other patients.  - George

[slowandsteady]

Wikipedia Referrence:  http://en.wikipedia.org/wiki/Alpha_1-antitrypsin

Interesting line of reasoning. The wikipedia article says

Disorders of this protein include alpha 1-antitrypsin deficiency, a hereditary disorder in which a deficiency of alpha 1-antitrypsin leads to a chronic uninhibited tissue breakdown.

Looking at my 23andme.com report, I have the PiMM variant, meaning I should have normal serum level of A1AT according to my genes. I'm about to have some bloodwork done. I think I'll spring for this test too.

[George999]

I am currently pushing my docs for a never ending string of lab tests and I suspect that is now beginning to get interesting.  At some point around five years ago or more, before I contracted Peyronie's, my doctor mentioned that I was testing low on total serum protein in my blood.  He then commented that doctors were seeing a lot of this and were not really concerned about it and were basically writing it off as flaky results from the lab.  Now years later, my neurologist did a rather complete protein scan on my blood.  That test shows ONE protein to be radically low.  That protein is Alpha 1 Globulin.  This protein is produced by the liver and its major purpose is to protect elastin rich tissue from immune system attack.  The main concern when this is low is, of course, lung tissue.  Anybody other than myself see anything possibly interesting about this?  I have not yet discussed this with the doctors, my next appointment is in about two weeks.  I find this whole sequence very curious at this point.  - George

Wikipedia Referrence:  http://en.wikipedia.org/wiki/Alpha_1-antitrypsin

[Tim468]

Maybe Lizagill is simply interested in EVERYTHING related to "health"!

Tim

[newguy]

fwiw, I suspect lizagill is actually just a bot.  I'm not allowed to post links, but if you search Google for the exact text of "her" comments, you'll find them duplicated ad nauseum on health sites around the web.

Correct. It all led up to posting a link about 'cheap viagra'. Someone else, posted some casino links yestesterday. I reported both of them, so they will likely soon be removed. I'm sure people wouldn't mind if the links were actually intended to be informative, but that's not the case with either of these. It's very easy to spot people signing up, posting 2 or 3 nonsense posts, then some links, so their efforts are wasted anyway.

(feel free to delete this message mods)

[pdnoob]

fwiw, I suspect lizagill is actually just a bot.  I'm not allowed to post links, but if you search Google for the exact text of "her" comments, you'll find them duplicated ad nauseum on health sites around the web.

[Old Man]

lizagill:

Sorry that you are involved in the Peyronies Disease community now. Please, if you will, share more about your connection so that the forum can help you and yours better, etc.

Anyway, welcome to the forum and hope that you find many answers to your questions. If we can help at any time, please feel free to let us know.

Old Man

[lizagill]

Thanks for sharing this informative information. I have got lot of information. Please keep sharing more and more information.


This member banned for creating a spam account.

[slowandsteady]

Since there is life in the blood, and the blood is now flowing to the right places, let the healing begin!

I hope it makes a difference for you. Low testosterone levels haven't prevented or cured my Peyronies Disease though. For the last few years my serum testosterone has been over 700 ng/dL.

s&s

[BrooksBro]

One word describes my very new experience - WOW! 

I applied the Testim gel Saturday morning.  I awoke twice Saturday night with a full erection.  I applied the gel again Sunday morning, and was again awakened twice Sunday night/early Monday morning. 

Rather than being a medicine, where it has to be taken for a while to achieve a therapeutic level, this seems to be a direct replacement or supplement to a natural body regulator.  HOW it works is less important to me than that it DOES work. 

I feel like I am on the threshold of the meds I have been taking finally having the right environment for them to work. 

Since there is life in the blood, and the blood is now flowing to the right places, let the healing begin!

[newguy]

Thanks for that comment Tim.  I truly believe we are each an experiment of one.  Friday I learned that I have below normal testosterone level; not nearly to your 140.  Applying Testim gel for the next 30 days, I hope to find out if this is my cause for the few spontaneous night time erections and decreased viagra effectivness.  I last had my testosterone checked about 6 years ago, when I first started viagra for ED, and it was reported as normal then. 

Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).Tim

Soundds like a reasonable approach. Please do let us know if you have success .

[BrooksBro]

Thanks for that comment Tim.  I truly believe we are each an experiment of one.  Friday I learned that I have below normal testosterone level; not nearly to your 140.  Applying Testim gel for the next 30 days, I hope to find out if this is my cause for the few spontaneous night time erections and decreased viagra effectivness.  I last had my testosterone checked about 6 years ago, when I first started viagra for ED, and it was reported as normal then. 

Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).Tim

[Tim468]

Viagra has helped me when my T was below 140. However, I did not have total ED, but simply weaker than I wanted (or needed).

Tim

[jackp]

poor viagra response when the total testosterone level is less than 400.  When the testosterone level was treated to achieve a higher level, viagra was effective

That was not what happend to me. I got my testosterone to the top of the lab total range. None of the ED treatments worked for me. I felt better but no change in ED.

Jackp

[BrooksBro]

In a recent post, I wrote there was not an agreed upon threshold for testosterone treatment.  My statement was not correct.  More importantly for those taking viagra, it appears it is highly important to have a satsfactory testosterone level.

On slide #4 of Dr. Levine's webcast - What to do when PDE 5 Inhibitors Fail: Combination Therapy and Other Options  - http://webcasts.prous.com/AUA2007/pop_up_bio.asp?sid=163&id=288&q=auto&v=auto&webcast=course01&CID=&CLID=2# - he points out poor viagra response when the total testosterone level is less than 400.  When the testosterone level was treated to achieve a higher level, viagra was effective.

This article cites references ranges by age groups.
http://www.mens-hormonal-health.com/normal-testosterone-levels-in-men.html

[cowboyfood]

Or maybe whatever it is that is CAUSING the hormone levels to be abnormal is ALSO causing the Peyronie's?  There are so many possibilities as to how these issues could be interlinked, it boggles the mind.  - George

Exactly, Cause and Effect assertions are tough to defend.  That is why casual cause and effect arguments on anything other than very simple observations can be destroyed quickly.

[George999]

Or maybe whatever it is that is CAUSING the hormone levels to be abnormal is ALSO causing the Peyronie's?  There are so many possibilities as to how these issues could be interlinked, it boggles the mind.  - George

[BrooksBro]

Interesting thought.  "Hormones" covers a lot of territory.  To some, it means testosterone, while it may be different to other people.  I started taking thyroid hormones about 1 year before developing peyronie's.  Those hormones greatly improved my libido.  Perhaps if I had not corrected the hypothyroid condition, I might not have developed peyronie's.  Even if there was, I don't plan to stop taking the thyroid hormones.

I learned, among endocrinologists, there is not an accepted level of testosterone below which mandates treatment.  As you described your own situation, is sometimes more important to look at the whole picture than to rely solely on a number from a test.  At least with thyroid levels, there are agreed upon treatment thresholds.

[GaryNC]

I was looking at the ages of the men here and the age of onset of peyronies disease.  I got my pyronies through an injury as a young man.  I noticed than many men here got the disease in their 50's.  I realize the older you get the more likely something is likely to happen to you as a matter of odds.  Just wondering if a lower hormone level might be involved as a factor in the onset of peyronies disease.  I have been taking a male hormone supplement for a few years now.  I am 53.  The hair grew back on my legs and I have erections while sleeping again.  The proper hormone level and night time erections might help the penis stay healthy.  If the hair is missing on your legs you probably have a hormone issue.

[falcone]

Would you think that the procedure to freeze off genital warts on the skin on the shaft of an uncircumcised penis could cause damage in the layers beneath and therefore peyronie's?

[Ironman]

Thank you guys for your replies. I don't currently feel under sway of OCD. Ma's death last summer, and an ensuing degree of anxiety I never knew before that, set me straight OCD-wise. Not to mention, aging itself, with or without the humbling condition, works wonders for old neuroses. THe thawts one needs to make in order to wank using porn, or even conjure up old and however dear memories, seemed not worth the sacrifice of a hard-won equanimity. So I wait for love, and a treatment of some sort for Peyronies Disease. Love-wise, I hope that I meet a woman who perhaps enjoys sex not wholly dependent on the usual manuevers. For playing music, in addition to its obvious pleasures, has given me good hands...

[BentYoung]

Ironman,

I would have to agree completely that this is OCD related. I went through similar things in my childhood - and consequently now also have Peyronie's and urinary spraying. My OCD is just as prevalent today but centered completely around mental rumination now. 

[slowandsteady]

Ironman, some of what you describe sounds like a touch of OCD. We've discussed using niacin and taurine for Peyronies Disease in this thread. One benefit of niacin (as niacinamide) is for anxiety/OCD. I've had persistent low level anxiety over the years, and a touch of OCD (biting my tongue, for example). With niacinamide (I take 1 gram in the morning), the anxiety is just not there, and it doesn't even occur to me to bite my tongue when nervous.

[chiguy]

Some members do complain of urinary problems along with peyronie's. Most doctors say that the plaque won't reach the urethra. A lot of times the anxiety over the changes to your male systems causes an increase in urination and you start to notice things that you didn't before (such as peeing leftward).

I myself am 24 and wake once a night to urinate, but I have done this for years. They say vitamin E relaxes the bladder also, but if that's the case, mine should never awaken.

[Ironman]

Hi friends,
I gottem both, Peyronies Disease, and Duy... Here's how I gottem. I am a pianist. Over the years I played very difficult "stride" style pieces, which require the left hand to stretch alot. Indeed, the Duy is in my left had. In addition I play guitar, and, emulating the great Allan Holdswroth, I played, and still do, riffs which require unusual stretching. THis stress, I am sure, damaged the tissue in my left palm, and the resulting "scar" is merely my immune defence against chronic injury. Luckily, my condition here does not cause a contraction and I can still play both instruments, and joint pain is more of a problem than DUY.

As for Peyronies Disease .. well, I'm anonymous so here goes ... I wank, or used to in an unusual way. Rubbing against the bed--not with the hand. Or, humping the mattress. I won't discuss my psychic issues, but I used porn to "cause" arousal--in one period peaking in my 40s I wanked several times a day. Time passed, I grew older. Real love seemed out of reach and, even as I write this, it's been since 94 since I had real sex with a real woman. (I'm 61) In 2007 I had a 3 month wank-fast, for reasons beyond the "scope" of this post, tho nothing physiological, and when I resumed the "self-abuse" (Peyronies give new meaning to that phrase), I felt a pinching pain, and over the next months the upward curve increased. Note, my wanking style, "", rarely resulted in me even seeing my erect penis. If a curve had been nascent I didn't see, nor feel, in a flaccid state, anything. The frequency of wanking, and the fact that my penis was under my weight, crushed more or less against the mattress, I am sure, was the tipping point in my condition.

These injuries, their co-relation, of course, imply that the sufferer has a predisposition to these "diseases"--Please NOTE, I see Peyronies and Duypoytrens both as symptoms of a grander underlying immune disorder--or, is it a GOOD THING? a protection, albeit an overcompensation, against, well, yet more abuse--and so I call them "conditions, not diseases.

Recently a compound curve to the left has emerged, from a mild listing. A strong indent causes the curve and I think I can feel fibroid under the penis. Waking (frequently) overnights to pee, when I have a slight tumescence from a full or full-feeling bladder, I PEE LEFTWARD. THis is, at this point, more alarming than the condition (Peyronies). THe implication is that the urethra is being impinged, at least when the penis is slightly with blood. The leftward stream is gone when I pee while the penis is "cold", devoid of tumescence.

It is disheartening to see a worsening of one's condition, but I have not read anything about Peyronies Disease affecting the ability to pee. THis potential, to me, elevated the problem well beyond an "erectile disorder".

Thanks for reading, who ever, and, as PBS's Tavis Smiley says, Keep the Faith ...

[slowandsteady]

No propecia here, for another data point.

[chiguy]

Each day I become more and more convinced propecia, the hair loss pill, is partially responsible for peyronie's and ED in some males. There are far too many on it, who are young like me, that have either peyronie's, ED, or both.

When I see Dr. Levine I am going to ask him about the connection. In the meantime, I decided today to stop taking propecia. I would rather lose some of my hair then worry about the effect on my sexual function.

I was reading the propecia side effects forum on the web, and hopefully when I stop taking the pill, I am able to get fuller, stronger erections. The crazy thing is that Merck doesn't admit that these side effects are harmful and of course has done nothing to stop them.

[newguy]

My peyroies came two phases in life.  I must admit that as a young man age 20 I was too rough with my favorite toy.  I started to get some curveature to the right and some plaques started and would go away and another etc for a year or so.  I was stable for a number of years and then noticed some pain and new plaque.  I also noticed after sex or upon waking up with a huge erection that I had small spots in my penis that were holding high pressure blood.  When I stretched and massaged my penis on the tender area this went away.  Any injury can start peyronies.  I did not realize I could get one while sleeping until I found this.

What's the current states of your plaque and curvature? Are you taking any presciptions treatments for it, or supplements etc?

[GaryNC]

My peyroies came two phases in life.  I must admit that as a young man age 20 I was too rough with my favorite toy.  I started to get some curveature to the right and some plaques started and would go away and another etc for a year or so.  I was stable for a number of years and then noticed some pain and new plaque.  I also noticed after sex or upon waking up with a huge erection that I had small spots in my penis that were holding high pressure blood.  When I stretched and massaged my penis on the tender area this went away.  Any injury can start peyronies.  I did not realize I could get one while sleeping until I found this.

[slowandsteady]

Perhaps Hawk could excise this whole string of posts and move it to a curcumin thread in the oral treatments section.

Yes please.

Edit: new thread here.

[George999]

Perhaps Hawk could excise this whole string of posts and move it to a curcumin thread in the oral treatments section.  It has sort of blossomed here in the wrong place with all sorts of useful information and thoughts and would be better preserved within its own thread under the correct category since most of the posts have little to do with the "causes" category.  - George

[George999]

Interesting stuff curcumin ...

Scientists say curry compound kills cancer cells

Too bad many of its beneficial properties get toasted in the digestive system.  - George

OOPS - My apologies, I missed the fact that Skjaldborg already posted this.