CAUSES of Peyronie's Disease - started 2005

[LWillisjr]

ocelot556,

I tend to agree with you. While I find all the metabolic posts on this forum interesting, it doesn't explain why the body heals itself one way at one time, and a different way antother time. If my vitamin D levels, T-cells, or ABCDEFG cells were off, then I would agree that I would get repeated occurances of Peyronies Disease, and that simply is not the case with me. I agree all these things may be factors, but there seems to be too many variables in this Peyronies Disease equation.

[Tim468]

I think of healing as the movement towards homeostasis (natural balance). The trip to homeostasis may not arrive (ie leaving a visible scar on the skin or on a chest xray) but a functional return is often successful.

Many illnesses fit a general model of something normal, gone awry. If you are driving down the road and inhale a bug, the bronchial tube constricts, mucus floods around the bug and slimes it up, white cells migrate in for good measure, and you cough the mess out. That is a normal protective mechanism. If you do it when you breathe just plain old air, we call it asthma.

So if we look at Peyronie's as healing from micro-tears that is gone awry (a very popular theory of why it happens) then the questions become different, like: why just there? Why not the skin, liver, lung etc? So the over-expressed and abundant wound healing response leading to scarring is a theory, but it leaves many questions unanswered, IMO.

Similarly, the implication that vitamin D is underlying this is supported (weakly, IMO) by a predilection for people in more Northern climes (less sunlight), and by noting a relationship between sub-optimal levels of D and a host of other illnesses that bear similarities to Peyronie's (but which are in fact different).

Although I know George tends to get excited about his new discoveries (a trait I like and which helps keep this board alive and lively), and we are debating vitamin D a lot lately, that does not mean that it is the only factor causing Peyronie's. Nor does it mean that George has forgotten that other factors play roles in the development of Peyronie's Disease.

Clearly, a genetic factor underlies the developing in some men but not others. Clearly, a rheumatologic (autoimmune process) causes the disease in others. Clearly, plain and simple trauma causes it in others. My hope is that someday, a comprehensive screening bloodwork panel will be done automatically in any man presenting with Peyronie's Disease, and they will quickly be sent to get the individualized plan of therapy which will leave them disease free. Right now we are like blind men stumbling around. I wish it was different.

Tim

[George999]

Although I know George tends to get excited about his new discoveries (a trait I like and which helps keep this board alive and lively), and we are debating vitamin D a lot lately, that does not mean that it is the only factor causing Peyronie's. Nor does it mean that George has forgotten that other factors play roles in the development of Peyronie's Disease.

Exactly!  I, in fact, strongly believe that there are plenty of people who are extremely deficient in vitamin D who can whack, stretch and twist their penis in every way known to man and not suffer any adverse effects.  Thats how genetics works.  But those same people, by the same token, might be extremely vulnerable to some pulmonary malady.  Its all a matter of genetics.  But overly genetics is something called epigenetics.  And this is where vitamin D comes into play.  Vitamin D is the body's genetic policeman that tries to set things in order when bad genes start imposing themselves.  And if its deficient, it exposes a vulnerability that might not otherwise appear.  - George

[Bertie]

I am Type II diabetic. Is there a direct link with diabetes and Peyronies Disease? I  was diagnosed in 2005. I am NOT on any medication and all my regular blood tests indicate I have "it under control" via diet etc. Just how many folks who have Peyronies Disease also have Type II diabetes? Or I am just unlucky - twice! Thanks.

[George999]

I am Type II diabetic. Is there a direct link with diabetes and Peyronies Disease? I  was diagnosed in 2005. I am NOT on any medication and all my regular blood tests indicate I have "it under control" via diet etc. Just how many folks who have Peyronies Disease also have Type II diabetes? Or I am just unlucky - twice! Thanks.

Both Peyronie's and the typical health problems related to diabetes feature a process known as glycation which damages healthy tissue.  Diabetes is a known risk factor for Peyronie's.  In my thinking there is DEFINITELY a link.  The further you can get your blood sugar down by eliminating sugar and other sweeteners from your diet and achieving weight reduction, the less aggressive your Peyronie's is likely to be.  - George

[ComeBacKid]

George,

Your absolutely right, there is no doubt in my mind peyronies is correlated to the immune system.  For me when I started my aldara cream it took awhile to kick in.  When it did I had pins and needles poking me on my back type of feeling and my peyronies worsened slowly starting at this time.  My penis bent more each day, got harder, and shrunk, this immune system starting cream aldara seemed to fire up my immune system all over my body.  There is no doubt now pentox is helping my penis but allowed my skin virus to come back and "flare" up.  One thing is for sure, pentox does work.  Last time I took it for nine months and it gave me size back, softened my penis, and gave me straighter erections.  After I quit taking it nearly two years ago these results stayed!  But then slowly over time the bend, hardening and shortening came back.  This could be due to some kind of cell regeneration or as some doctors say cells in the body constantly replace themselves.  

This leads me to think if peyronies can ever be totally taken away?  Say you get a shot of xiaflex and it totally cures you.  But then your peyronies comes back slowly day by day over the course of two years.  Is this possible?   If it is, it either means you didn't get totally rid of every cell of scar tissue or fibrosis.  Or you did get rid of ever cell of scar tissue or fibrosis and now the body is attacking normal healthy tissue again.  But before I got hit by a soccer ball years ago, my body didn't just attack normal healthy tissue in my penis.  So therefore it only started doing this after there was an injury there, meaning it will only try to repair tissue if there is any damaged in the vicinity.....

Comebackid

[dude4242]

here are some of these causes I have figured to cause some of the problems with this condition.

1. sleeping on your stomach. you get erections throughout the night. the weight of your body pushes down on the erection. it is not like sleeping on your back where the erection is free and doesnt have your body pushing down on it. when sleeping, especially in bed at night on your stomach you will get erections and depending on what you are thinking or dreaming your natural reaction will be to hump the bed. not only is your body weight against your erection but you are now grinding on it into your bed. that can cause scar tissue.

2. when kids are teenagers and they masterbate, they are usually in a hurry not to get caught. because of this you will be holding and stroking your penis in all kind of unnnatural ways to get it done in a hurry. you dont have up and down strokes but you might be holding if off the the side. when teenagers masterbate they are in a hurry and hold it and stroke it all kinds of ways because they are in a hurry.

3. not using lubrication. the wear and tear of no lubrication or lotion. you are holding and squeezing your penis and the probably cause scar tissue. when you use lotion or lubricant it is a lot easier on the penis. how would girls feel if they had sex without at least their natural lubrication for years. not good.

[Tim468]

dude,

Those are interesting thoughts, particularly about position during sleep. But I would point out that MANY people sleep that way, or masturbate hurriedly, or do it without lubrication.

There must be something else that contributes to cause the disease in the individual who has the tendency to get this problem.

Tim

[RichB]

I had a similar thought the other day about sleeping. Essentially, sleeping like that will not create scar tissue in itself because your body is used to you sleeping in that fashion. But, if there was an injury, and you slept on your stomach, there would be stress on your nighttime erections, it being concentrated at the site of the issue. This would cause a disruption of the healing process, resulting in Peyronies Disease. But it is just a theory.

[newguy]

Interesting thoughts. I must admit that of late I have been trying of my back to avoid reducing bloodflow. Maybe it's a bit extreme, but if there is a balance to be tipped one way or the other, I'd rather do everything I can to ensure that I'm on the right end of the peyronies seesaw.

[calabreseboy]

Hi everyone.  I'm not sure if this is the correct thread for my post, so feel free to move it to the appropriate section of need be.

I believe I have Peyronie's Disease and have for quite a while.  I'm 23, and can remember having a bent penis for many, many years.  I can't even remember what it looks like straight.  I'd say around the time I was 8 or 9 it was crooked.  Perhaps even earlier.  

I don't remember any trauma happening there, however I sleep on my stomach and very often wake up with an erection, causing it to bend forcefully under the weight of my body.  

I'm not very good with angles, but I'm guess it's roughly a 70 degree angle.  Not quite 90 degrees, but it bends in the middle to the left.  I've never had any pain there or ED (although with my last partner, I failed to keep an erection with her, but I rather put that down to the fact that I wasn't very attracted to her).  I never had problems with my longest girlfriend of 4 years.  

Now, I am a very laid back kind of guy.  I don't really care if a girl finds it unattractive or laughs at it.  I just brush it off the shoulder, because I find that most of the time the bend actually helps me in the sack to reach places I normally can't.  What I'm very worried about is that the bend will get worse (it's pretty much stayed the same over the past 15 or so years) and that eventually I will have to resolve to surgery and a smaller penis (I'm roughly 6" erect, so I don't think I could handle losing 1-2 inches).  

I read that in some cases it improves, other cases it gets worse and other cases it stays the same forever.  I'm guessing I'm the latter?  I've been reading these forums for a while and see how drugs are being tested, but we all know that it takes like 8 years before a drug goes through trials and is available to the public.  

I have no trouble visiting my doctor, as like I said I'm very laid back (I have no issue discussing genital problems and showing a doctor, pending they're male of course).  But I know what my GP will say - "there's not much you can do unless you want to get surgery", which at this stage I don't.

But I'm guess that many of the regulars on this forum have a very advanced knowledge of the disease.  Have you ever come across someone who has had it as long as me?  

[newguy]

calabreseboy - I admire your positive attitude concerning other peoples view of your penis. The psychological aspect is perhaps the most difficult to cope with, so you're dealing with that really well.

If this issue has been present since age 8, it's possible that you have a congenital curve, and not peyronies disease. In short that means that you may have been born with the curve. I don't want to simply assume that is the case though. You may have experienced an injury at a young age, and as such it's definitely worth booking an appointment with a urologist, for peace of mind if nothing else. If it is congentical, then the curve won't change (unless you do injure yourself at some stage due to the angle). If it is peyronies, it's encouraging that you state that the angle has never changed, as it means that the condition is stable in your case. Still, should it be peyronies (my hunch is that it isn't) you may want to start on VED therapy as there's a good chance this will really make a difference with the curve. There's also traction too, though in my view the VED is typically more convenient and there's less of a down side to it's use.

[calabreseboy]

Can you link me to a thread/post explain VED therapy, what it entails etc.?

[newguy]

Can you link me to a thread/post explain VED therapy, what it entails etc.?

Here are the VED highlights: https://www.peyroniesforum.net/index.php/topic,439.0.html  It forms part of the 'newly diagnosed highlights board': https://www.peyroniesforum.net/index.php/board,18.0.html

Feel free to look into the therapy to gain a greater understanding of it, but your peyronie's status is far from certain at this time. If your condition is congenital I wouldn't be so eager for you to launch into using the VED. You should go see a urologist, preferably one with good knowledge of peyronies and that will clarfiy things for you. I can understand if you are embarrassed about doing so, but it really is the single most proactive step you can take at this time and you'll then be in a good position to weigh up the various options that relate to your specific case.

[Tim468]

calabrese

If it is not broken, don't fix it.

You have a penis that works, and it has always been that way (bent). Probably congenital (means born with it). Fixing it means probably losing length, and possibly losing feeling.

Your choice.

We have debated if a VED or traction might help a congenital curvature, and some (like me) think it might. But those who try to enlarge the penis with traction do not report that it helps curves.

Tim

[Hawk]

It is not just likely that you have a congenital curve rather than Peyronies Disease, it is almost certain!

[justbob]

Hi

Sometime around October last year (2008) I developed a localised pain in the area at the base of my penis inside the body, on the left hand side.  I then started to notice that my penis was tending to want to bend more to the left.  This occurs when flacid and is most noticable when semi erect but with a full erection it straightens out more, only pointing a little to the left and slightly rotated anticlockwise perhaps.  The base of the penis is a bit sore but I am still able to finish masturbating.  If I get an erection and pull it towards the right it is very sore at the left base area, whereas in the other direction it is comfortably anchored to my body.

My problems started earlier than this when I got what appeared to be a urinary tract infection in the summer 2006 but with negative urine test.  I then developed pain in my right testical several weeks later, a dull ache very similar to the pain I now have at the left side base of my penis, erectile dysfunction, weaker less pleasurable ejaculations.  The affected testical has also ascended 1/2 inch and is sitting in a vertical position instead of horizontal.  I was diagnosed with probable epididymitis (possible prostatitis) and prescribed various antibiotics.  Eventually out of desperation I tried Ciprofloxacin in the summer 2007 despite having previously had an adverse reaction to fluroquinolone antibiotics.  I took this drug for 3 weeks before stopping due to severe side effects, tendinopathy, visual impairment, gastritis.  I also developed a tightness in the connective tissue where the penis attaches to the body especially on the left side, so it would hurt if I stretched my penis.  I used to stretch my penis in the shower in the morning but had to stop this.  There was some pain at the root of the penis with erections but not so bad it prevented masturbation.  The pain eased up after a few months and for several months I forgot about it.  I think there was some tightness and loss of elasticity along the left side of the penis but nothing too bad and I hoped it would gradually heal as my body recovered from the fluroquinlone toxicity.  Then towards the end of the year my current problem happened, it appeared as a new localised pain at the root of the penis, it has had a variable course but is bad again at the moment.

I don't know what to do.  It is more difficult to get an erection now but I keep on wanting to to see if the problem is getting worse.  Should I stop masturbating, could this be making the problem worse?  Should I stretch the penis or not?  What nutritional supplements help?  I have tried Acetyl-L-Carnitine and this certainly helped with erectile function.  Eskimo 3 fish oil is also good.

Do you think I could have Peyronie's?  Do you think there could be a connection between taking the Ciprofloxacin and my penis problems?  Has anyone else here developed similar problems after taking fluroquinolone drugs?

Thank you so much.

Bob

[ComeBacKid]

Get on pentox ASAP if your completely healthy.  The way you describe your bend is like mine, the pentox has helped eliminate some of my curve when semi flaccid and makes my erection full, solid, and straight, it looks like its pumped up with a VED and solid.  The twist is what I have to, this is a real pain!

Comebackid

[Iceman]

comebackkid  what does this mean??

The twist is what I have to, this is a real pain!

[ComeBacKid]

What does the twist mean?  I'm not exactly sure, but just guessing, it probably means we have scar tissue on the side of the penis that our penis bends towards, and that scar tissue probably wraps underneath or overtop the penis as well.  A doppler ultrasound would be helpful here to make a hypothesis and test it.  It could mean nothing, but I"d have to think it has everything to do with where the scar tissue is located.  No doubt about it, if you go the surgery route, the twist is more difficult to fix.  My twist is worse when I'm semi erect and then straightens out when erect more.  I've always had the twist, its annoying as hell!  The pentox seems to be making the tissue somewhat softer, but it still is hardened and still twists somewhat.  I know have a bucket of pentox, a full supply for six months into the future, and I'm going to get another prescription before the end of this month and make it a years supply.  I'll probably just stay on this until xiaflex comes out and some people say it works or doesnt.

You still taking the pentox? The latest price I got it at was $32 a month at walmart, thats three pills a day, anyone else find a better price?

Comebackid

[newguy]

Couldn't find either of these via search. Apologies if they have already been posted

Peyronie's disease (Peyronies Disease) is characterized by an inflammatory response beneath the tunica albuginea with fibroblast proliferation forming a thickened fibrous plaque that may cause pain, penile curvature and erectile dysfunction. The progression of the Peyronies Disease plaque may eventually lead to calcification or ossification. Current therapeutic success is often unsatisfactory because of limited insight into disease mechanisms. Research has been hampered by the lack of a universally accepted animal model. We describe an animal model of spontaneous Peyronies Disease in tight skin (Tsk) mice, a C57Bl/6J subline that reproduces with age important features of the human disease (fibrous plaque formation, penile bending and areas of chondroid metaplasia with heterotopic ossification). Histological analysis demonstrated an evident structural disorganization of the tunica albuginea with excessive accumulation of type I collagen. At 12 months of age, fibrous plaques with areas of chondroid metaplasia and heterotopic ossification characterized Tsk penises. The up-regulation of hypoxia-inducible factor-1 (HIF-1) leads to an increased downstream expression of HIF-1 target genes, such as TGFbeta and iNOS. These factors, together with some PDGF family members, can cause collagen deposition in Tsk penises. They can also influence chondrocyte differentiation and heterotopic bone formation. In conclusion, hypoxia, HIF-1 and HIF-1 target genes appear to play an important role in the pathogenesis of Peyronies Disease in Tsk mice. This mouse model that is the first example of naturally occurring model of Peyronies Disease in laboratory animals may aid in the identification of signalling pathways crucial for Peyronies Disease and should facilitate the designing and testing of new therapeutic interventions.

-
http://www.ncbi.nlm.nih.gov/pubmed/18599338

Possibly useful insight into how peyronie's occurs in some people seemingly without any kind of dramatic of painful injury.

ObjectivesTo investigate whether tissue expression of plasminogen activator inhibitor type 1 (PAI-1) is increased in the fibrotic plaque of human Peyronie's disease (Peyronies Disease). Increased tissue levels of PAI-1, an inhibitor of both fibrinolysis and collagenolysis, have been found in a variety of fibrotic conditions. Recently, it was reported that PAI-1 expression was also increased in the fibrotic plaque of an animal model of Peyronies Disease induced by the injection of fibrin into the tunica albuginea (TA) of the penis.

MethodsTissue (n = 10/group) and cells (n = 4/group) obtained from the penile TA plaque of patients with Peyronies Disease or from normal TA were subjected to RNA extraction and real-time reverse transcriptase-polymerase chain reaction. Tissues were also analyzed by immunohistochemistry (n = 8/group) for the detection of PAI-1 expression at the transcription and protein levels.

ResultsA significant 3.5-fold to 16-fold increase was found in both PAI-1 mRNA and protein levels in the human Peyronies Disease plaque and the respective fibroblast cultures compared with the normal non-Peyronies Disease TA.

ConclusionsThe observed increase in PAI-1 in the human Peyronies Disease plaque agrees with what has been observed in the rat and suggests that PAI-1 may be a key pro-fibrotic factor in the development of human Peyronies Disease.

- http://linkinghub.elsevier.com/retrieve/pii/S0090429505000828

Losing 10% weight can reduce levels significantly, as can exercise. Lots of info about modulators here: http://adipocyte.co.uk/PAI.htm though maybe in our case once these events have started to unfold it's too little too late? Most of us are already exercising and eating well as it is, but it does press the importance of those activities.

[LWillisjr]

I've always had the twist, its annoying as hell!

Comebackid,
You have always had the twist since when??  Birth?

[brutis]

As a newly diagnosed member (excuse the pun) I was curious to know if taking collagen supplements could have been a contributing factor to the development of Peyronie's? I have been taking Collagen as a supplement for about 3 months to aid healing of a long term Achilles tendon problem, I first noticed "the Lump" about a month ago. Having read about Collagenase treatment for Peyronie's which actually reduces collagen levels got me wondering if the supplements I was taking may have caused the problem. Any comments would be appreciated.

[justbob]

Hi,

I would like to know the same thing.  There is some anecdotal evidence that glucosamine, a collagen building supplement, can in some cases hasten the onset of Peyronie's, and that if it is discontinued symptoms will improve.  May I ask what caused your tendon problem?  I developed tendon problems after taking the Fluroquinolone antibiotic Ciprofloxacin two years ago.  My side effects started when I was taking the drug, but onset can sometimes be gradual and may be delayed by many months.  This class of drugs is known to destroy collagen and inhibit collagen synthesis.

The Ciprofloxacin also caused pain in the connective tissue at the base of the penis, worse on the left hand side where there was also an associated tightness and loss of elasticity.  I thought this was probably primarily damage to the suspensory ligaments, certainly on the right hand side.  It gradually improved so that on the right there was no pain.  However, at the end of 2008, over a year after the course of Ciprofloxacin I developed a new onset pain similar to epididymitis in the same region, at the base of the penis on the left.  This is when I really started to notice my penis curving more to the left as written in previous posts.  This may or may not be significant, but in October 2008 I took a nutritional supplement containing BioCell Collagen for 2 to 4 weeks to improve my joint and tendon health.  I can appreciate the hypothesis that this may cause increased collagen deposition in injured tissue resulting in scar tissue formation, but in relation to my personal case I don't think it would cause new onset pain such as I describe?

I'm trying to work out if my Peyronie's symptoms are connected to damaged connective tissue from taking Ciprofloxacin or if it is an unrelated new onset problem.  If you too took a Fluroquinolone drug before the onset of Peyronie's I would suspect we may find others.

In my case I have a urological condition, diagnosed as chronic epididymitis/possible prostatitis that predates the Ciprofloxacin and is the reason I was presribed it.  This presented initially with urinary tract infection symptoms but negative urine test (this doesn't rule out a prostate infection), I then developed pain in the right testical and the testical partially ascended into a vertical position so it is sitting about half an inch to an inch higher than before.  Could an undiagnosed urological infection be causing the pain and inflammation in the root of my penis?  I have had a digital rectal exam to check my prostate and it feels normal.

Thanks.  Regards, Bob

As a newly diagnosed member (excuse the pun) I was curious to know if taking collagen supplements could have been a contributing factor to the development of Peyronie's? I have been taking Collagen as a supplement for about 3 months to aid healing of a long term Achilles tendon problem, I first noticed "the Lump" about a month ago.

[Hawk]

I do not think there is any established connection between collagen supplements and Peyronies Disease but there has been some speculation of a possible connection without much basis.  Many men take such supplements as they age, just like they do Viagra, bp meds etc.  so , they are often suspected by individuals cannot come up with the cause ans effect they like to be able to pinpoint.

As far a the Fluroquinolone family of antibiotics is concerned, it is known that they do interfere with collagen synthesis (or that they at least sometimes interfere).  My logic would tell me this would tend to treat or prevent Peyronies Disease not cause it since they are sometimes used to prevent other forms of scaring.  I guess it seems feasible that reduction of collagen in the penis structures could lead to an injury and if the drug was then stopped the healing process could go awry and scar tissue could overrun the bounds of the injury.  To me this would be the drug contributing to the injury but not directly causing Peyronies Disease.  


I am speculating and have no background to conclude one way or the other.  In fact I doubt that anyone knows for sure.

The problem here once more is that lots of men with and without Peyronies Disease use Fluroquinolone antibiotics so only very controlled studies would ever likely answer this question.

[brutis]

 Just Bob & Hawk

Thanks for your comments. I have discontinued my Collagen supplements & will let you know the outcome.

With regard to my Achilles problem, I have been an avid squash player all my life, having ruptured my R/H achilles years ago, I injured my left one & it was taking forever to heal (in excess of 8 months). It was recommended that I take  Collagen as a supplement to aid the healing of my Achilles plus all the other aches & pains associated with being a life long squash player ie knees & hips. I wonder if it is mere coincidence that I developed Peyronie's within 2 months of starting the Collagen.

As for the Fluroquinolone drugs, I haven't ever taken of these  however I have been taking Glucosamine for years for joint health, maybe  the combination of the Glucosamine & the Collagen is the problem?

I am 48 & my Achilles problem is now gone, so perhaps Collagen is good in some areas &  not so good in others!

Regards

Brutis

[ocelot556]

Having skimmed over a few of the free abstracts on a few pay-per-view journal article sites, I noticed an interesting claim: That androgens actually supress the actions of wound healing in the penis, and when androgen levels are low, that "boost" to the healing process in the penis can cause peyronie's.

There is this study as well, part of which states that in castrated rats, collagen deposition during wound healing was increased: http://www.nature.com/labinvest/journal/v87/n9/full/3700627a.html

...How many here have had full hormonal profiles done? I have a uro who is interested in getting my blood work, finally, so I will find out soon if my testosterone levels are out of whack. But what do you all think? Could an androgen deficiency be the cause of some Peyronies Disease?

[Hawk]

There is this study as well, part of which states that in castrated rats, collagen deposition during wound healing was increased: http://www.nature.com/labinvest/journal/v87/n9/full/3700627a.html

My suspicion is that this has to do with a decrease in erections and oxygenation.

https://www.peyroniesforum.net/index.php/topic,130.0.html
Especially read the text that is in red.

[young25]

I just had a 24 hour urine test done for hormones.. hopefully my doc will be able to find some relation... i will get the results in 2 weeks and will update .....

[ocelot556]

Hawk -

There are men here who have posted and concurred with that theory, that they did not get erections for a time and that may have caused the fibrosis -- but what of us, like myself, who had consistent erections and still developed chronic Peyronies Disease? It couldn't simply be the lack of oxygenation.

While I'm willing to agree that this may be the case in the castrated rat study, there has to be more than "the penis needs oxygenated blood" because some of us (I'm imagining the younger sufferers here like myself, in their 20's and 30's, weren't having ED during the initial onset of their Peyronies Disease) were getting the necessary erections and the disease was still progressing.

So in a patient who has no trouble getting erections, what would be the cause? Poor oxygenation? If that were the cause, wouldn't there be other symptoms as certainly that would have an effect on other bodily systems. I think there are a myriad of ways one can develop Peyronies Disease - I myself am inclined to beleive that by altering the hormonal cocktail in my body, I lowered something important and never recovered from an injury. But when you're taking pentox, viagra, and supplements and you're still developing plaques? I have to beleive that there is something fundamentally wrong with the blood that you're relying on to carry those medicines to the plauque in the first place.

I don't know if androgens are the answer, but I hope to address this with my doctor (I may look up an endo) to see if he can add anything to the suspicion.

[Hawk]

-- but what of us, like myself, who had consistent erections and still developed chronic Peyronies Disease? It couldn't simply be the lack of oxygenation.

Ocelot,  I agree there are a number of triggers and no doubt a combination of factors that must be present.  I was not clear in my post, but I meant to say that in the specific case of a lack of hormones I suspect the association is a lack of erections.  I do not think that in the case of injury the cause is a lack of erection, or in some other situations.  There are a list conditions that have at least a link to Peyronies Disease that directly impact frequency, intensity, and duration of erections followed by increased incidence of Peyronies Disease.

Older males
Prostate Surgery
Diabetes

Therefore when someone shows a connection between testosterone and Peyronies Disease I think I can show a connection between low testosterone and reduced erections for an additional piece of circumstantial evidence.

If there is clinical data that suggests low testosterone results in an increased incidence of Peyronies Disease regardless of erection quality/quantity then that would refute the connection.

[young25]

i agree with ocelot556 .... I have been taking hell lot of supplements including pentox twice a day but nuthing improved.... infact it went downhill only... then i took dhea for a week and i felt a little better.. it could be physcological also as the difference ws very little so I cant back it up... plus interfering with hormones wasnt a good idea.... so i dropped dhea and nw consulting a male hormone specialist... "hopefully" if thrs a link, i "wish" my doc is able to interpret .... but again peyronies isnt so simple as just supplementing with hormones... still keeping my chin up with wishes and hopes by my side that one day i will be able to live a peaceful normal functioning life once again.......

[ocelot556]

I'm with you on that one, Hawk. I'd love to see more studies in general performed on Peyronies Disease. I'm sure that in a few decades there will be studies published that show the various methods of getting this horrible disease just as there are many different triggers to promote cancers. I also think, especially with the studies being made now, that the current medical mindset has been completely wrong on testosterone therapy. I read a study that clains men who take TRT to adjust their hormone levels as they age (since androgen levels decline with age) have a better lifespan than those who let their testosterone decline naturally! It is my belief that future treatments regarding Peyronies Disease will also involve mild to moderate testosterone replacement, since androgens and DHT are the main components of healing in the penis.

Don't think that I'm being disagreeable here, I'm just throwing ideas at the wall and seeing what sticks. I'm a big fan of dialectic. But aside from the struggle of dealing with this horrible condition we have to struggle with the uncertainty of the disease's cause and progression itself! And since we're left to work with only a handful of doctors who truly care, who are more focused on treating the symptoms than discovering the underlying cause of it, its left to us to look at the big picture and extrapolate a little. I may be completely wrong, and if my being so led to a better understanding of this damn disease I'd gladly do it.

[newguy]

i agree with ocelot556 .... I have been taking hell lot of supplements including pentox twice a day but nuthing improved.... infact it went downhill only...

Out of curiosity young25, how has your condition changed since you joined the forum in september 2008? Has your slight curvature changed at all? do you experience more/less/any pain? have you started on the VED and/or any other supplements? How long did you take pentox for?

It's good to provide more info, as it helps us gain perspetive of how individuals conditions develop, and how their courses of treatment may or may not help them.

[young25]

Hi newguy,

My condition is detoriating day by day.. initailly thr ws no visible plague... the ultrasound also didnt find any plague, only curvature & ED.. but nw thr is visible string plague on top left side.. i took pentox from sept 2008 to 1st week of dec.. 400 mg a day.... things were stable then... took a break for a month as was out of stock.. started again in jan 09 to till date twice a day.... along with vit e(400mg)... ALC(500mg), L-arginine(500 mg).. and bunch of other supplements taken irregularly.... whr m i nw.. worse than ever.. never had pain intially but nw do have slight pain.... No change in ED dept also. The only +ve i got from was when taking dhea 25mg every other day but guess it was increasing estrogens in my body so i stopped.. rght nw getting a full hormone checkup & probable balance, once i achieve the same then will think about some new regime

i also think argnine is helping ...but nuthing remarkable




other supplemets i take irregularly..

- same
- did a full bottle of ppc
- choline
- paba
- horny goat weed
- NAC
- Liver defence


Planning to add..

- GABA ( for promoting GH)
- DIM

I am also visiting Male Hormone specialist to get my hormones corrected..

[young25]

Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.



http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

[jackp]

Young25

Intresting study. As I remember I fit that model in 1995 when my bought with peyronies started. I still get testosterone injections today.

When having your testosterone checked be sure the doctor checks all not just total.
The following should be checked;
Testosterone , Free, Bio and Total
Testosterone , Free
Testosterone, Bioavailable
SHBG
Albumin, Serum
Estradiol, Ultrasensitive (E2)

Total testosterone should be in the upper 75% of lab range. Free and Bioavailable should be at least 65% of lab range.

Jackp

[young25]

Thanks JackP,

I am getting the 24hr- Rhein Urine Analysis. Hopefully it should cover everything. Its gen used by ppl who abuse Steriods and thr system is out of place. Let see where my results lie, I have an appointment this week so hopefully I will come to know the results. I will keep the board posted.

[newguy]

young25 - The plaque is the body attempting to heal itself following on from the initial inflammation. It may continue to progress, or could stablise or even retreat somewhat. To improve the eventual outcome you should definitely stick with pentox and other core oral treatments. There is probably still some scope for influencing the condition. Hopefully the pain will not worsen much more. Fingers crossed. It may be worth exploring use of the VED or light traction at some point soon.

[Tim468]

Bingo.

This confirms what I have been thinking about the significant role of Testosterone in many men's disease. Not all men - some (many? especially OLDER men? when Peyronies Disease is more common?).

Very important study - unfortunately I cannot get full access online to it.

Tim

Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.



http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

[Hawk]

Tim,

Are you referring to some post in this topic

[slowandsteady]

Testosterone Deficiency and Peyronie's Disease: Pilot Data Suggesting a Significant Relationship.
http://www.ncbi.nlm.nih.gov/sites/entrez/19473459?dopt=Abstract&holding=f1000,f1000m,isrctn

Interesting. I don't seem to fit the pattern:

Testosterone deficiency (TD) was defined as TT values less than 300 ng/dL and/or FT less than 1.5 ng/dL.

My TT is 780 ng/dL and FT was 1.86 ng/dL. My DHEA-sulfate was low at 84 ug/dL, and apparently there is some association of that with Peyronies Disease.

s&s

[young25]

Update about my results.. My Testestoserone is infact low. its even below the normal range.. so for 25yr old guy its not good news. My doctor has prescribed stuff to restart my system. I will see where all this leads too.. so i can partially explain my Peyronies & venous leak.. :-S

[jackp]

young25

Low testosterone (T) causes lots of problems.  Proper treatment will increase your general health, libido, and help control your weight, among other things.

I have been on T treatment for 15 years.

The things it will not help are peyronies, venous leakage, corporal fibrosis, etc.

Sorry

Jackp

[young25]

Thanks for the advice JackP,

I am under care of one of the better doctors who knw about T replacement, so hopefully he should treat me well too( keeping my fingers crossed).

Abt Venous leak, fibrosis & Peyronies... I thnk I donot have fibrosis as none of the doctors i visited have mentioned it nor did the doppler untrasound detect any.. so really dono

Venous leak , I am a little hopeful as I have read certain reports where (low T)people got better with T replacement... At this point of time I really dont have any option so atleast T gives me a ray of hope.. Maybe it dosnt help but as of now nuthings helping & the kind of place I come from an implant is not an option...

So T replacement is the only geniune option left with me.. its like last bump before a dead end..

[slowandsteady]

Any thoughts about impaired circulation being a big factor in Peyronie's? It seems to be associated with Dupuytren's.

I'm thinking more about the small blood vessels (microangiopathy, perhaps subclinical).

From this study:

A significant association was found between penile fibrosis and diabetes mellitus (P<0.05). This may be explained by the fact that diabetes mellitus produces microangiopathy of the small blood vessels, leading to defective oxygenation to the cavernous tissue and subsequently helping in fibrosis development.

I'm liking my pycnogenol and l-arginine regimen more and more.

s&s

[newguy]

young25 - At least you're now aware of a problem. This does appear to keep coming up more and more lately. I wonder if it could mean that those with higher test levels are less prone to inflammatory cascades OR less prone to scarring as the condition resolves OR perhaps neither of these suggestions..

slowandsteady - Exercises stimulates growth of existing and new blood vessels all over the body (including the heart and brain) , though I don't know if the same applies to the penis and/or the length of time this process takes. Still, maybe this in a combination with the treatments you suggested would be a good combo. For what it's worth I do feel that the pycnogenol is helping me too.

It's also worth noting that low testosterone is quite common in diabetics, so maybe there is another link to the previous thoughts.

[cowboyfood]

For what it's worth I do feel that the pycnogenol is helping me too.

newguy, slowandsteady, all:

Does it make any sense to take pycnogenol while you're taking a daily dosage of Viagra or Cialis?

Along with the VED protocol, I've been taking Pentox (1,000), Viagra (25mg), L-Arginine (2-3g), ALC (2.5g), and a little D3 (800-1200) on a daily basis; for the past 2.5 months.

Also, I've been eating well and running everyday (and, I actually gave up Diet Coke, instead, I'm mixing diet cranberry or grape juice with ice and water).

Over the past 4 - 6 weeks I've noticed a lot of "welcoming" effects: hard daytime erections, hard nocturnal and morning erections are happening all the time, and my flaccid state always seems to be "full", even bigger than before I started this regiment.

In fact, I'm convinced that my erections are harder, better, and occur more frequently than before I noticed my dent, which was back in December.

Oh, and my mental state is back to pre-December levels - In March, April and part of May I was about as down and scared as one could get!  So, I'm sure this is a major factor also (special thanks to Old Man, Tim, Jackp, Jackieo, Nemo for encouragement during those days!)...those were bad times...I couldn't get an erection back then no matter what.

CF

[slowandsteady]

slowandsteady - Exercises stimulates growth of existing and new blood vessels all over the body (including the heart and brain) , though I don't know if the same applies to the penis and/or the length of time this process takes. Still, maybe this in a combination with the treatments you suggested would be a good combo. For what it's worth I do feel that the pycnogenol is helping me too.

It's also worth noting that low testosterone is quite common in diabetics, so maybe there is another link to the previous thoughts.

I wonder if there is another mechanism involved in microangiopathy besides testosterone and diabetes (I have above average testosterone and no blood sugar issues, though my DHEA-S is low (85 ug/dl). I would imagine that low testosterone and low DHEA often go together.

Low serum DHEA seems to be associated with an increase in fibrosis (here in cardiac fibrosis, PMID 15657092):

In this study, we examined the effects of DHEA on regulation of collagen mRNA and collagen synthesis in cultured cardiac fibroblasts. Treatment with DHEA (10–6 M) resulted in a significant decrease in procollagen type I mRNA expression compared with controls. This was accompanied by a significant decrease in procollagen type I protein accumulation in the medium and also a significant decrease in procollagen type I protein synthesis in the cellular matrix.

Anyone have a DHEA-S result to share?

[slowandsteady]

More speculation: Raynaud's disease is a disorder of the small blood vessels and can be accompanied by connective tissue disorders. It can respond to 7-keto DHEA. Perhaps Peyronie's might too (PMID 12581618):

Patients with Raynaud's phenomenon have abnormal digital vasoconstriction in response to cold. The pathogenesis remains unknown but may involve a local neurovascular defect leading to vasoconstriction. Diagnosis of primary Raynaud's phenomenon is based on typical symptomatology coupled with normal physical examination, normal laboratory studies and lack of observable pathology by nail fold capillaroscopy. Secondary Raynaud's phenomenon is known to occur associated with several connective tissue diseases, vascular injury due to repeated vibrational trauma, and other causes which produce demonstrable vascular and microcirculatory damage. Treatment of Raynaud's symptoms is conservative and aimed at prevention of attacks. Patients are advised to remain warm and, if possible, to live in warm climates. We suggest that an ergogenic (thermogenic) steroid, 7-oxo-DHEA (3-acetoxyandrost-5-ene-7,17-dione), which is available without prescription as the trademarked 7-keto DHEA, may be very helpful in prevention of primary Raynaud's attacks by increasing the basal metabolic rate and inhibiting vasospasm.

s&s