OTHER IDEAS & SUGESTIONS – causes of Peyronie’s

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slowandsteady

Wikipedia has an article on trigger points (muscle knots). I get these in my back fairly regularly, and I'm curious whether anyone else does too. In general, conditions that go along with Peyronies Disease might give some insight.

Connective tissue issues, fibrotic scaring, and impeded blood circulation can be involved with the knots. Seems like a hard mattress would make this worse.

s&s

snowydreams

Can cystoscopy worsen Peyronies or the erectile dysfunction associated with it?  Any personal experiences?

slowandsteady

Here's a thought I'm just kicking around, that there could be some involvement with E. coli bacteria and Peyronies Disease. In Escherichia coli-human uroepithelial cell interaction products enhance fibroblast migration and matrix accumulation (PMID 11325085):
QuoteUrinary tract infection has been associated with renal interstitial scarring and ureteral wall fibrosis. The mechanism of progression of scarring despite attenuation of the primary insult is not clear. We examined the role of the products of the interaction between Escherichia coli and human uroepithelial cells (HUC-EC-S) on the migration of fibroblasts, as well as their matrix synthesis. MATERIALS AND METHODS: We evaluated the effect of HUC-EC-S (concentration of 10%, 15%, and 25%) on the migration of fibroblasts across a filter in a modified Boyden chamber. To determine the role of transforming growth factor-beta and MCP-1, we studied the effect of anti-TGF-beta and anti-MCP-1 antibodies on interaction product-induced fibroblast migration. The effect of HUC-EC-S on fibronectin and collagen I accumulation was studied by the Western blotting. RESULTS: Bacterial-HUC interaction products enhanced (P < 0.001) migration of fibroblasts compared with uroepithelial interaction product (HUC-S). Anti-TGF-beta and anti-MCP-1 antibodies partly inhibited (P < 0.001) the HUC-EC-S-induced fibroblast migration. Also, HUC-EC-S-treated fibroblasts showed enhanced accumulation of fibronectin and collagen 1. CONCLUSION: Escherichia coli-induced activation of HUC not only promotes migration of fibroblasts but also triggers matrix remodeling.

Interesting the E. coli can cause some of the tissue changes seen in Peyronies Disease. Apparently it can show up outside its normal habitat of the lower colon in places like the urethra and the upper respiratory system, and when it's gone systemic it can be very dangerous.

s&s

George999

This would not surprise me at all.  I believe it is simply part of a larger immune failure syndrome.  In the end it is the immune system that controls the spread of pathogenic e. coli.  Note that not all e. coli are pathogenic.  Most are part of the essential makeup of the gut.  In fact, an essential nutrient for the good e. coli is PABA, which is NOT an essential nutrient for humans.  Thats PABA as in Potaba!  But e. coli mutate easily and pathogenic forms are widespread.  When the immune system fails to keep up with them, they can pretty much go where they want in the body and that is not a good scene.  This has long been referred to in the alternative medicine sphere as "leaky gut syndrome".  I would say it is more like "leaky immune system syndrome".  Alternative medicine usually associates this process with food allergies, particularly guten sensitivity.  But new research in Australia is associating food allergies with Vitamin D deficiency.  And round and round we go.  You start to look around and all of these things are connected in some interesting ways.  - George

slowandsteady

One thing about E. coli is that it's susceptible to d-mannose, a simple sugar. It's not digestible, and normally is filtered by the kidneys and passes out through urine, which is how it gets exposed to the UTI. People with urinary tract infections caused by E. coli have posted impressive results with d-mannose (for example).

It's also a very small molecule (180.16 Da), so it might lend itself to topical use (PMID 2205657).

Tim468

Probably. Not my experience though.

We have read here reports of catheterization leading to development of Peyronie's Disease (or perhaps lying on a oddly bent penis during surgery for something else).

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Skjaldborg

I am skeptical about any theory or cause for Peyronies Disease except genetic predisposition, trauma, side effects from certain medications and severe diabetes (or a combination thereof). It may indeed be true that certain immune functions occur during an e. coli-caused  urinary infection but that does not necessarily mean it gives rise to Peyronie's. E. Coli is so common in and around the human body that I would expect to see higher rates of Peyronie's Disease across the board if it did have a role in Peyronies Disease. Also, since there is a high rate of co-morbidity with Lederhose Disease and Depuytren's contracture with Peyronie's (40% ish). Since these conditions are viewed as related,  I would also expect many many more people would be suffering from those conditions as well, especially women, who are more susceptible to urinary tract infections. I would guess that women, due to obvious anatomical differences, would have more instances of Depuytren's and Lederhose than there are now if E. Coli played a role.

The study posted below discusses scarring in the urinary tract, where E. Coli are present during an infection. My understanding is that in most cases E. Coli migrates externally from the anus and up the urethra and into the bladder, rather than through the blood stream. Apparently hematogenic (blood born) e coli. can occur but only in very immuno compromised individuals. I just don't see how E. Coli would be present in or around the tunica of the penis (I see there is an opportunity for an anal sex joke here, but I'm being serious). I know some folks on the forum have immune problems but this theory doesn't hold water for the men who have Peyronie's but are otherwise perfectly healthy.

-Skjald

slowandsteady

Quote from: Skjaldborg on December 14, 2009, 04:28:38 PM
I am skeptical about any theory or cause for Peyronies Disease except genetic predisposition, trauma, side effects from certain medications and severe diabetes (or a combination thereof). It may indeed be true that certain immune functions occur during an e. coli-caused  urinary infection but that does not necessarily mean it gives rise to Peyronie's. E. Coli is so common in and around the human body that I would expect to see higher rates of Peyronie's Disease across the board if it did have a role in Peyronies Disease. Also, since there is a high rate of co-morbidity with Lederhose Disease and Depuytren's contracture with Peyronie's (40% ish). Since these conditions are viewed as related,  I would also expect many many more people would be suffering from those conditions as well, especially women, who are more susceptible to urinary tract infections. I would guess that women, due to obvious anatomical differences, would have more instances of Depuytren's and Lederhose than there are now if E. Coli played a role.

The study posted below discusses scarring in the urinary tract, where E. Coli are present during an infection. My understanding is that in most cases E. Coli migrates externally from the anus and up the urethra and into the bladder, rather than through the blood stream. Apparently hematogenic (blood born) e coli. can occur but only in very immuno compromised individuals. I just don't see how E. Coli would be present in or around the tunica of the penis (I see there is an opportunity for an anal sex joke here, but I'm being serious). I know some folks on the forum have immune problems but this theory doesn't hold water for the men who have Peyronie's but are otherwise perfectly healthy.

-Skjald

A lot of good points. I'm wondering if trauma to the penis/tunica can provide a place for E. coli to gain a foothold.

Skjaldborg

Quote from: slowandsteady on December 14, 2009, 05:30:16 PM
A lot of good points. I'm wondering if trauma to the penis/tunica can provide a place for E. coli to gain a foothold.

Maybe, but why and how? That would mean that e. coli was in the bloodstream and I think that would be rare in most healthy individuals. And why would it be localized to the tunica? I get minor injuries to my hands and feet all the time, and I certainly did around the time I developed Peyronie's from a minor injury, but I don't have Lederhose or Depuytren's. I have slammed my fingers in car doors, messed up my knuckles punching a heavy bag and have stubbed the bejesus out of my toes numerous times, but to no long term ill effect. I believe there are more likely causes to this disease. Admittedly, I would sincerely like to hear that Peyronie's was caused by something like eating a certain flavor of ice cream or wearing smelly gym socks, because I could then make sure that if I have a son he could steer clear of this terrible malady. Unfortunately, the reasons behind this disease are complex and not easily treated, as we are all aware.
-Skjald

George999

I think it is important to note that there are two classifications of e. coli.  The first is the common kind.  It is not pathogenic.  It is harmless and in fact a necessary component of a healthy intestinal eco system.  The other type is the pathogenic kind that you hear about on the news frequently.  It is infectious and can run rampant in immuno compromised individuals.  - George

Skjaldborg

Although I am skeptical of certain alleged causes of Peyronie's, I have often wondered if circumcision may contribute somehow. I would be inclined to believe the e.coli theory if circumcision were the route it took to get in the body. Although I know the procedure doesn't technically effect the tunica, it is a significant trauma for a tiny creature with a weak immune system to endure. Circumcision, unlike regular surgery, is not performed in a super-sterile environment (nor is bris), so I wouldn't be surprised if e.coli or other bacteria are getting into the wound. For the record, I still have a significant circumcision scar whereas all of my other childhood scrapes, cuts and gashes healed nicely with no scar whatsoever. Makes you wonder...

I won't even go into the consent issue, as I'm sure that's been covered before. Rest assured, little Skjaldborgsen is going to be left intact, happy and healthy and with hope will be graced with better fortune than his old man.

-Skjald


George999

And remember, the potential for contamination is not just bacterial, but viral as well these days.  And there are some WEIRD viruses out there.  - George

slowandsteady

I'm having a bit of a flair-up again, and I wonder if the raw chocolate powder I started putting in my coffee lately is the culprit.

There is some evidence supporting the claim that serum iron can increase fibrosis (here a study on cardiac fibrosis and iron overload). The proposed mechanism is that myocytes normally rein in myofibroblasts but can't when they take on too much iron.

s&s

Tim468

Never say it!

I'd blame the coffee first.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

slowandsteady

I've gone back and forth over time about what the causes of Peyronies Disease are. There are certainly lots of things associated with Peyronies Disease and things (like diabetes, pre-diabetes, autoimmune disease, and inflammation) that make it worse, the root cause still has not been proven out.

In any case, the hypothesis presented in this paper, "Peyronie's disease: an anatomically-based hypothesis and beyond", makes a lot of sense to me.

QuoteIn my opinion, Peyronie's disease is aberrant wound healing in response to an inflammation trapped within the layers of tunica albuginea. The arrangement of the vessels traversing the tunica albuginea is unique in that a cuff of loose areolar tissue cushions the arteries while the veins are in direct contact with the fibrous tunica. As a result, the arterial flow into the erectile tissue continues during erection (except in the rigid phase when the intracavernous pressure exceeds the systolic blood pressure) while the venous channels are compressed. When a blunt trauma breaks the fibers of the tunica with extravasation, the resulting inflammatory response creates an area of edema and cell infiltration which compress the nearby venous channels and forming a 'trapped' inflammatory response.

Veins take blood away from tissues. The tunica's venous tissue in this view is less able to remove blood and compounds from the site of the inflammation in the tunica due to its structure. Vicious cycle ensues:

QuoteThe unique ability of TGFb to produce more of itself forms a vicious cycle within this microenvironment and results in excessive production of intercellular matrix and collagen fibers.

Increasing outflow from the tunica via heat or infrared treatment and stretching might help in this scenario. Taking substances to inhibit TGFb1 (like NAC, R-ALA, curcumin, and others) might complement that.

s&s

George999

I think the problem with this is that it still does not answer the question of why some get Peyronie's with even a minor injury and others sustain major injury and heal normally.  I think that we all pretty much knew that the TA is anatomically vulnerable.  The question is what is going wrong with the body's capability to deal with this vulnerability.  I think the answer to that question is complex in that it probably requires that more than one thing go wrong at the same time.  We know that there are a lot of things that can hinder the body's ability to heal.  Elevated blood sugar, low vitamin D levels, hypertension, the list is endless.  Unfortunately most patients are looking for the silver bullet.  And most doctors are looking to simply get the patient out of their office and make some money in the process.  Doctors simply assume that it is normal for people to be overweight, diabetic, hypertensive, etc.  There is no real effort on the part of most doctors to prevent or proactively treat these issues.  Each one simply merits yet another medication added to the list.  People get sent off for MRI exams costing literally tens of thousands of dollars, but people are seldom tested for mundane things like toxic bacteria in the gut, lyme disease, or heavy metal poisoning, let alone more exotic things like vitamin D levels.  Any of these investigations would cost a fraction of the price of one extensive MRI or CAT scan.  And people are seldom counseled as to a need to loose weight and are seldom given any guidance as to how to loose weight.  With all of this going on in the background, it is no wonder that weird diseases like Peyronie's are proliferating like never before.  So while I believe everything that this hypothesis outlines, it still leaves many questions unanswered.

diminishedhope

I'm asking this because in my personal endeavors to study my rare condition, I found many sources/ studies that indicate that peyronies disease/condition is set up to occur after an injury or trauma to the tunica albuginia. My rare condition is that I've been experiencing many priapismic episodes since early childhood. Not until about age 20 did I actually become aware of my increased risk of getting serious penile injuries and finally become extra careful. Ever since then I've been learning about the common complications and risks to my penis as result of the multiple priapism episodes I had been mysteriously getting. I am
still getting them. I have experienced these painful priapismic episodes almost systematically for a stretch of 26 years.!!!
In my understanding, during a priapism episode the entire penis (all of its tissues) get strained with constant pressure of the blood and lack of blood circulation (ischemia). This causes a variable degree of tissue damage (with pain) relative to the lack of circulation compounded by the duration of time and the intensity of pressure and temperature of the involved tissues. The tissue damage will include the tunica albugina and even if the priapismic episode has not caused an injury to this tunica albugina it has stressed it and weakened it. Later, the weakened tunica albugina may tear or become fatigued in any portion there of and lead to fibrosis, scar tissue, etc, in that portion.
As another relation to priapism and Peyronies Disease, the men that suffered from just one event of priapism are sometimes found to develop corporeal fibrosis attributing to varying degrees of erectile dysfunction.
Some men developed peyronies disease even years after the priapism was resolved. In such cases the connection seems more coincidental.
The surgical and or other treatments for priapism can inflict injury to the tunica albugina, Even the common use of penile injections to contract the erectile tissue away from the inner tunica wall are sometimes blamed for injury.

One question or hypothesis that I want to throw at you is ; Can or does the occurrence of peyronies ever interfere with the outflow of blood through the penis' dorsal vein. If it does then I would think that this venous blood flow interference would predispose him to priapism.

What have you learned or experienced as links between Peyronies Disease and Priapism.

If you have questions for me, let um roll.,,, I don't find many people like myself who are in the know about priapism.  
diminishedhope,
Long time sufferer of penile problems; Recurrent Priapism, nerve damage/numbness, plus 4yrs with Peyronies Disease

Tim468

Priapism can cause Peyronie's Disease.

A potential cause of priapism is a clotting disorder, or a red cell disorder (like thallasemia or sickle cell disease). You might want to visit a very good hematologist to see if your red cell conformation is always normal (that refers to the shape of the cell - which can become less 'bendable" under certain conditions). Red cells can "catch" in the outflow veins, and lead to buildup of blood in the penis and thus priapism. It is a common side effect of sickle cell disease crises.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

slowandsteady

I thought this might be worth a mention.

From the wiki article, "Thymic stromal lymphopoietin is a protein that in humans is encoded by the TSLP gene. ... It mainly impacts myeloid cells and induces the release of T cell-attracting chemokines from monocytes and enhances the maturation of CD11c(+) dendritic cells. ... TSLP is produced mainly by non-hematopoietic cells as fibroblasts, epithelial cells and different types of stromal  or stromal-like cells.''

People having the G version of rs3806932 are associated with having lower levels of TSLP. My genotype for this SNP is AA, no G's at all.

From the Spittoon,
QuoteThe TSLP protein is known to regulate inflammatory responses.  It is a key initiator of allergic inflammatory diseases and has been shown to be overproduced in atopic dermatitis lesions and asthma-affected lungs.  People with EoE often also suffer from these other allergic conditions.

So I'm potentially more likely to have fibroblasts that produce T cell-attracting chemokines which cause an inflammatory response.

s&s

SSmithe

I have trigger points in my butt muscles that cause constant pelvic tension which has translated into poor posture and all around body tension.  I am unable to feel like I can completely relax my penenium as well.  I will be further looking into this, as it may have caused nerve entrapment and loss of sensation in my penis.  (in addition to the Peyronies Disease)
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

boomerang

Sounds good stuff, are you a medical person?
How did you get tested?
What is the treatment?

My next line of research will be genetic and which Polymorphisms are associated with Peyronies, Ledderhose, Dupuytrens, Hypodontia etc and is there a common link.

I would hope that if there is a set of Polymorphisms associated then gene therapy could be an answer.

Getting my family tested could be expensive at the moment unless you know of a low cost option.

I find it strange that only specific parts of the body are affected by associated conditions.

In the case of  Dupytrens only one finger on each hand, normally and in the case of my feet only two matching toes too.  How does  the condition know which fingers or toes to affect? Unless genetic.

Best regards


slowandsteady

No, I'm in engineering actually; it happens that I'm interested in health and supplements.

I used 23andme for testing, initially just because it was a way to see which polymorphism I had for folate metabolism (lots of people can't metabolize that nasty form of folate called folic acid, present in just about every multivitamin under the sun), and a sale was going on. I later upgraded to full access because I find the whole thing so interesting.

I haven't come across any supplement that affects thymic stromal lymphopoietin unfortunately (not to mention I'm uncertain whether it's active in the TA).

MikeSmith

I remember a post by someone who had Peyronies Disease after surgery, and he thought it was possibly due to the penis being compressed during surgery (I don't remember the details well).  I started to think about my own history, and I realized I had only been focusing on medical issues & medications until now.  I completely ignored the fact I had surgery with general anesthesia about 2 weeks before I noticed the formation of these plaques and the significant physical changes - specifically the hourglassing & curve.  Prior to this, I only had a very mild case of Peyronies Disease - if you could even call it that.  Basically, I rarely ever got fully 100% erect (though an orgasm was possible) and things seemed slightly smaller, but not as bad as now.  However, I never felt scar tissue or nodules until after surgery (maxilofacial surgery - so nowhere near the area).

I don't understand why men who have prostate surgery get peyronies sometimes (some do - some dont)...or if this has ever been explained.  I'm starting to wonder if there is a predisposition / stressor effect here...where I may have been predisposed and the "stress" (whatever it could've been - the anesthesia, an increase blood levels of byproducts related to injury) sort of pushed my system over the edge w/ peyronies.  In normal cases peyronies is caused by a direct injury to the penis (which I do not believe I had).  So, what if you had a serious, traumatic injury elsewhere (i.e. surgery) and your body pumped out all of the cytokines, etc... to repair this.  It's true that the injured tissue itself tends to produce the response & it doesn't go through the entire bloodstream... I am just wondering if it's possible or what people think of this idea.  The timing is just too coincidental for me & also for the other guy who posted about his surgery (not to mention the prostate patients...Peyronies Disease doesn't make sense to me after that)

Of course I could be totally wrong here - as my other main theory is that a semi-erect penis is more prone to injury during sex & also  probably the root cause of my problem...though I dont remember a specific episode.

diminishedhope

Thanks Tim, that is definitely true in my understanding. Blood conditions are very responsible for priapism in many cases. In my case I wanted to be tested especially because my dad had developed leukemia. But my tests were negative for any problems but I have wondered if the tests I've had really are broad spectrum or accurate for only specific blood cells. I haven't looked into the type of tests which I have had taken to understand their specific purpose or validity. But after writing this reply, I think I should.
I have learned so much regarding priapism and peyronie's disease and there physiological connections that I must relay that peyronie's is typically not to blame as the cause of priapism. BUT IT CAN affect the shape of the tunica albuginia which we all can certainly testify to, so peyronie's is also likely to affect the vascular system (blood flow) within the affected portion of the penis. So I do feel they are both worth a close study.
-diminishedhope
Long time sufferer of penile problems; Recurrent Priapism, nerve damage/numbness, plus 4yrs with Peyronies Disease

SSmithe

I just started reading about Psychoneuroimmunology, essentially how the brain can cause physical changes in the body... like the placebo effect.   More and more people are finding reducing stress and anxiety helps with their chronic pelvic pain symptoms.  (CPPS is a encompassing term for protatitis, pelvic floor dysfunction, IC, and chronic pelvic muscle tension)  I recently saw a physical therapist who confirmed my suspicion, that I have CPPS issues.  On a CPPS forum similar to this one, there are people who also have Peyronies and most feel there is a connection between the two.

Chronic muscle tension can lead to constricted blood vessels, nerve issues, increased stress and adrenal activity, and regional inflammation.  And we all know what inflammation does...

I am not proposing our stressed minds bent our wangs, but I do believe that there is some connection between my CPPS and peyronies and not merely a coincidence.
I would be interested to hear if anyone on this forum has CPPS or similar.
SSmithe
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

DannyOcean

I have spent a lot of time these last few weeks studying CPPS (http://en.wikipedia.org/wiki/Chronic_prostatitis/chronic_pelvic_pain_syndrome) and I wonder if there isn't a strong connection/correlation with Peyronies Disease.  Let me offer some background context.

While I don't have CPPS I believe I was likely on the path for it.  I've noticed that I've done a lot of tensing of the muscles in my pelvic region (specifically my perineum and my glutes).  I wasn't really even aware of it until a year ago or so.  Of course, this tensing intensified when I was under stress similar to how people might hold tension in their jaw and develop TMJ.  

I wouldn't go so far as to say that my pelvic tensing caused my Peyronies Disease but here's my thought process.  If you clenched your fist for 5-10 hours a day and did this for years it's likely that you could develop circulation problems or other issues.  Now if you took and slammed your fist against a door would you be more or less likely to injure your hand?  My theory is that you'd be more likely to injure your hand.  And I wonder if it's possible that this kind of thing might relate to Peyronies Disease.  If you tense the muscles around your penis for extended periods of times over months or even years, when the penis "slams its hand against the door" (i.e. has intercourse) does that make it more susceptible to injury?

There are two reasons why I bring this up.  The first is that if indeed there is a correlation between CPPS and Peyronies Disease (at least some instances of it) it might make sense for people to start doing things to prevent a future onset of CPPS.  The classic book in the genre is A Headache In The Pelvis although there are others.  If some of us sense that we are holding a lot of tension there by doing exercises to prevent CPPS it could help us avoid the double whammy or CPPS and Peyronies Disease.  

Second, and this is a bigger stretch, it's possible that exercises for CPPS could actually help with Peyronies Disease healing.  It does seem to make sense that if tension of pelvic muscles contributed to development of Peyronies Disease then anything that helps to undo that tension could help create a better environment for healing.  I have come across a lot of CPPS-related advice including certain stretches, trigger point work, myofascial massage/release, etc. that seem to help CPPS sufferers.  Should we be doing those things as well?

To sum up, I realize this is only a theory and should be treated as such.  However, it does seem like in our never-ending quest for a cure for Peyronies Disease there could be a lot of learn from people who deal with CPPS.  At a minimum it would be good to start some of these conversations.  

SSmithe

DannyOcean,
It was nice to read there is another CPPS / Peyronies theorist out there.  I have written similar posts about CPPS on this forum with little response.  However, I too believe Peyronie's and CPPS are related.  To add to what you have written:  I believe constantly tensed muscles cause inflammation, poor circulation, and jack-up your nervous system.  There is also the pudendal nerve that runs through the back of your pelvis through the perineum and into the penis.  Tensed muscles do cause this nerve to act-up causing all kinds of problems.  My theory is that a compressed pudendal nerve constantly "irritates" the smooth muscles in the penis and causes it to heal incorrectly.  This is obviously only a theory, and should be taken as such.

I have noticed the tension on my pelvis, glutes, lower back, and shoulders since I was probably 12 or 13 and I am 30 now.  I never pursued treatment for it as pain was never an issue, just uncomfortableness and poor posture.  Now that Peyronies has entered my life, I cannot shake the gut feeling that the two are connected.  

I am about 3/4 through A headache in the pelvis, and Paradoxical Relaxation.  I also recommend another book called Somatics by Thomas Hanna which deals with habitual muscle tension and how to prevent it from destroying your body.  I am having a hard time with the paradoxical relaxation as it seems so nebulous.  

Anyway, please send along any other thoughts you have regarding CPPS and Peyronies.  I have been on CPPS forums and there are people with Peyronies wondering about the same connection, so we are not alone in our theory.
SSmithe



32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

DannyOcean

Good info in your post.  It seems like so many of the Peyronies Disease "cures" are attempts to boost circulation and personally, I think that poor circulation to my pelvic region played a big role in my development of Peyronies Disease.  After having very strong erections throughout my 20s I went through a period a year or two prior to the onset of Peyronies where I had a little more difficulty getting erections and also where I was suffering from a lot of stress/anxiety.  I remember thinking to myself that I "just wasn't what I used to be" even though I was still shy of 30.  Peyronies Disease set in shortly thereafter.

I also grew up in a home where sexuality was fairly repressed.  I think because of that I may have subconsciously started to hold more tension in my groin.  I also suffered through bouts of struggle with pornography and infidelity, also things that could have caused tension to be held in that part of the body.  It's only in the last year or two that I've realized how pronounced the holding of tension was in my pelvic region but my guess is that I've been doing it for years.  I'm very thankful that I caught this before full-on pain developed as the healing process for CPPS seems at least as involved as that for Peyronies Disease.  

If indeed there is a connection or correlation then it would seem like we could learn a lot from the CPPS resources and community (and likely vice versa).  Sometimes with Peyronies there's a strong feeling of "wanting to do more" and when I dive into CPPS it seems like there are quite a few strategies that have been proven helpful such as trigger point massage and forms of stretching.  At a minimum it seems like doing these things wouldn't hurt.  If it helps prevent eventual onset of CPPS that would be great.  And if there's the possibility it helps with Peyronies Disease then that's the icing on the cake.

It would be great to hear from others.  Even if you don't actually have pelvic pain, do others here notice that you are (consciously or not) tensing the muscles of your pelvic floor, glutes, perineum, etc.?  This kind of stuff would be great to know about if it's prevalent throughout the Peyronies Disease community.

fubar

Hi guys:

A bout a year ago I started having circulation problems in my legs .MY legs would get extreamly tired while walking a slight grade or just when getting out of the car after a short drive. I would have to stop because my legs were in pain.Climbimg a staircase also, even the muscles in the buttock would get sore. All these are symptoms of P.A.D. And yes during this time erections were hard to achieve . When I did have them soft and weak.

I went to the doctors about these problems, already knowing i had artery disease, after having a heart attack at 34. The technician after doing the test said I had poor circulation but not bad enough to cause they symptoms. Go figure right?

After taking pentox,cialis and using the ved for less than a month I am happy to report all these symptoms have improved!  I have much less pain in my legs , and a very rigid silly looking penis.

I once again had been tested again last week they finally concluded I had blockages in my legs! Wow it took them a year later ,when symptoms were better.So yes I feel bad circulation contributes to peyronies and that cialis, pentox and ved therapy helps.

I would also like to add I have diabetes and gout and take bata blockers witch are considered to be contributers to this disease.

Lunch break over go to go: fubar

DannyOcean

Interesting to hear.  Someone else here said that Peyronies Disease might simply be "atherosclerosis of the penis" and I wonder how much truth there is to this?

It's also interesting to think that Peyronies Disease could actually be a warning sign (albeit not a very pleasant one) of potentially worse things like CPPS and heart disease and in a strange, twisted way (no pun intended) could be seen as a blessing in disguise.  I wouldn't dare say that to anyone with a condition worse than my fairly mild one but at the same time it is interesting to see how all this stuff might be (at least somewhat) related.

fubar

Dannyocean

I think you may have read to much in to my post. I was merely agreeing with you that circulation could be a factor. One could say that holding In your gut could cause circulation problems in the pelvic region. I do not know. Just throwing it out there.

I was not diagnosing or throwing a theory out there. I have only been dealing with peyronies four 4 months now.

Honestly, how could peyronies be a blessing for any man. I already have the great killers of man.  Please explain:
Fubar






GS

Danny,

The one thing Peyronies Disease will definitely do is get you to think about the health of your penis, which in turn will get you thinking about your overall heath.

Then, you start surfing the net for supplements and going to the doctor on a regular basis and exercising and thinking about the health of your penis some more.

That's about the only good things I can think of about having a really nasty disease.  And, it won't kill you...that's probably pretty important.

newguy

I agree wholeheartedly GS. Peyronie's has led me down a path where I exercise regularly, eat (relatively) well and don't do anything I deem to be damaging to my health. I've picked up a keen interest in supplements are often browse through supplements that can help combat various disorders and diseases even if I don't personally have them. Many people take their health for granted, or assume that someone else will pick up the pieces if an issue comes up. Having peyronie's disease has taught me to take a proactive and preventative approach to my own health.

Skjaldborg

Ditto Newguy and GS,

The silver lining to this utterly devastating and ridiculous condition is that you start taking better care of yourself and you appreciate what you have. When I first got this I felt that my sex life was over and that overnight I had turned from a healthy 29-year old into a feeble, crumbling Methuselah. My image of myself as a man was crushed, utterly crushed. I was angry and helpless. I used that anger and started exercising more, took the meds, went to the Uros, went to a therapist and got myself back on track. The uro appointments helped confirm that I am still very healthy, a few divots notwithstanding, and I appreciate that I'm doing OK knowing that this could be worse and may in fact get worse down the road. I'm also glad that I don't have something deadly.

Part of the reason this forum is here is to help us bounce back from this disease and to help ourselves and others find and exploit any silver lining we can.

-Skjald

Tim468

I note an increase in stress and progression of disease. I work on not being so reactive. IT suggests to me that an adrenal response (up tight and outta sight) is associated with mild progression of disease.

Of course, after having this for many years, I can recognize when something is happening to my body. Sure enough, the new dent will appear soon after noting a different aching feeling. That sensation, in turn, causes me to fret and worry - so cause and effect is very hard to tease apart here. Knowing something is happening can occur at a subconscious level IMHO and lead to a stress response.

So, chicken or egg?

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

boomerang

 Having had a whole host of other symptoms occurring at the same time as my peyronie's I have found that drinking tonic water has alleviated my leg cramps.

Tonic water contains Quinine.  I have since found that people do take Quinine tablets to ease night time leg cramps.  Leg cramps indicate poor blood flow.

It is standard practice among technical diagnostic engineers to look at all the symptoms and try to cure just one of them. In 90 percent of the cases the other symptoms are also alleviated.

I am pretty well convinced that all my problems stem from poor blood circulation due to my blood being too thick.  The medications I am taking all seem to be related to helping to thin the blood. I also have to prick my finger to take my blood sample for blood sugar tests and my blood is now very much thinner.  I don't now have a blood sugar problem now I am taking Neprinol.  Interestingly all the replies to my posts and most of the other posts for people who have had some success seem to relate to improving blood flow generally.  Even those that argued that I was wrong eventually agreed that the meds they were on also helped the blood flow.
VED also improves the blood flow to the penis as does Traction.

Quinine does have a positive effect on the blood flow but also brings up an interesting question about MOSQUITOES and protozoan or MALARIA type diseases.

We have a healthy population of mosquitoes where I live and they are more aggressive being of the salt water marsh mosquito type.  
I live in Essex England and where I live has a past history of Malaria.


My current theory is that in many cases the blood is too thick because of inflammation in the cardiovascular system.

Infection of the cardiovascular system would cause this thickening of the blood, and malaria type infections spread by mosquito, flea and tick bites would fit the bill.


I believe there are many types of malaria and protozoan like infections and some are milder than others.  The parasite toxoplasma gondii is also related to malaria and is spread by rats and domestic cats.

Finally this theory could explain why an injury to the penis triggers peyronie's.  If the person already has a cardiovascular infection then it would be an ideal time for the infection to spread to soft tissue while there is damage.

I also believe that our genetic makeup has a very big role to play in that some people are far more susceptible to certain infections than others.

It is the same with computers; a Microsoft Windows virus cannot normally infect an Apple Mac due to the different (genetic) computer code.

This is my theory so far and it is just a theory.  But I am having some success.

boomerang

Quote from: SSmithe on June 26, 2010, 03:25:45 PM
I just started reading about Psychoneuroimmunology, essentially how the brain can cause physical changes in the body... like the placebo effect.   More and more people are finding reducing stress and anxiety helps with their chronic pelvic pain symptoms.  (CPPS is a encompassing term for protatitis, pelvic floor dysfunction, IC, and chronic pelvic muscle tension)  I recently saw a physical therapist who confirmed my suspicion, that I have CPPS issues.  On a CPPS forum similar to this one, there are people who also have Peyronies and most feel there is a connection between the two.

Chronic muscle tension can lead to constricted blood vessels, nerve issues, increased stress and adrenal activity, and regional inflammation.  And we all know what inflammation does...

I am not proposing our stressed minds bent our wangs, but I do believe that there is some connection between my CPPS and peyronies and not merely a coincidence.
I would be interested to hear if anyone on this forum has CPPS or similar.
SSmithe

I would suspect that it is a blood problem and that is why your brain is stressed.  With blood problems all organs are stressed to some extent.  When I started using blood thinning medication my stress went away.  Last week I wrote a song on the morning of my daughters wedding and I performed it in front of 140 people that evening with very little stress. And it went down very well.

When the brain is suffering from lack of oxygen, glucose and nutrients it gets very stressed out but doesn't know why!

All the peyronie's treatments I have seen that people claim to have some success with seem to improve blood flow in some way.

I suspect that peyronie's is just another symptom of a much wider thing.  In fact two people could have totally different symptoms but both be suffering from the same disease.  It seems to take many years to get most of the symptoms but they come at random times so one person would not make the connection until much later in life.

I can also see why reducing stress helps because it is a vicious circle with stress constricting blood vessels.

boomerang

Quote from: SSmithe on July 15, 2010, 06:40:15 PM
DannyOcean,
It was nice to read there is another CPPS / Peyronies theorist out there.  I have written similar posts about CPPS on this forum with little response.  However, I too believe Peyronie's and CPPS are related.  To add to what you have written:  I believe constantly tensed muscles cause inflammation, poor circulation, and jack-up your nervous system.  There is also the pudendal nerve that runs through the back of your pelvis through the perineum and into the penis.  Tensed muscles do cause this nerve to act-up causing all kinds of problems.  My theory is that a compressed pudendal nerve constantly "irritates" the smooth muscles in the penis and causes it to heal incorrectly.  This is obviously only a theory, and should be taken as such.

I have noticed the tension on my pelvis, glutes, lower back, and shoulders since I was probably 12 or 13 and I am 30 now.  I never pursued treatment for it as pain was never an issue, just uncomfortableness and poor posture.  Now that Peyronies has entered my life, I cannot shake the gut feeling that the two are connected.  

I am about 3/4 through A headache in the pelvis, and Paradoxical Relaxation.  I also recommend another book called Somatics by Thomas Hanna which deals with habitual muscle tension and how to prevent it from destroying your body.  I am having a hard time with the paradoxical relaxation as it seems so nebulous.  

Anyway, please send along any other thoughts you have regarding CPPS and Peyronies.  I have been on CPPS forums and there are people with Peyronies wondering about the same connection, so we are not alone in our theory.
SSmithe


I also had incredible tension in my back, neck and had very sore legs when walking.  My back was so stiff I was disabled by it and my sternum was very sore.  I had multiple sore joints in my back and a hiatus hernia. I had severe constipation and balance problems which all led to a heart attack last year.  After being on heparin for six months most of these symptoms disappeared. I am now taking Neprinol (9 capsules a day, 3 at a time half an hour before meals) and still my symptoms have not come back but they do start to come back if I miss one dose.





Mike_O

Is a regular stretching routine for flexibility a treatment for CPPS? Peyronie's seems to come with quite a few other connective tissue disorders and stretching has worked will for me.


slowandsteady

The following came from a paper on Idiopathic Pulmonary Fibrosis:

QuoteIt has been described that mutant telomerase is associated with familial idiopathic pulmonary fibrosis.9 Telomerase is a specialized polymerase that adds telomere repeats to the ends of chromosomes. This helps to offset shortening that occurs during DNA replication. TGF-β negatively regulates telomerase activity.7 It is proposed that pulmonary fibrosis in patients with short telomeres is provoked by a loss of alveolar epithelial cells. Telomere shortening also occurs with aging, and it can also be acquired. This telomere shortening could promote the loss of alveolar epithelial cells, resulting in aberrant epithelial cell repair, and therefore should be considered as another potential contributor to the pathogenesis of idiopathic pulmonary fibrosis

I wonder if a connection between Peyronies Disease and short telomeres might exist. This brings up using potential telomerase activators like astragalus extracts (which enhances wound healing and helps liver and kidney fibrosis) or cycloastragenol.  

Dabak

These was some discussion on the Internet a while back about people getting toasted skin from keeping a hot laptop on their lap for extended periods.  This included issues with the scrotum getting too warm and interfering with spermatogenesis.  Could extended use of laptops (heating the penis) cause inflammation and therefore Peyronies?


slowandsteady

On the other hand, heat treatment (hyperthemia) has been been beneficial ...

restore

Although this might not be a new idea but was thinking about why the acute phase takes so long to stabilize.  Could it be that as we have painful erections (in our sleep or with sex), that we are continuing to build scar tissue?  Since this disease started with local internal bleeding, are we still suffering small tears and bleeding when we have pain in erections?  Should we artificially suppress all erections until all healing is complete?

skunkworks

Not getting erections is very bad for your penis. In fact I think I've read in more than a few places that if you never have erections, you get fibrosis in your penis.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

When people kink there ankle, there natural inclination is to go to bed and stay there until its healed.  The reality is that it has been proven that this approach doesn't work.  Its why hospitals get people out and walking about even before the scars have healed and even if they are screaming in pain.  ANY kind of scar tissue, if its not exercised regularly, will just shrink and shrink and shrink.  The less you exercise tissue, the more it will atrophy.  - George

restore

Thanks George and skunkworks, that makes sense.

Justin

Hello everybody, i'm new to this site and i'd like to say that it gives me NO pleasure whatsoever to be here! :(

I've had Peyronie's for 3 and a half years now, and despite trying various different treatments i am unable to stop the progression of the disease. I won't go into what i've tried (yet), but believe me i've done my utmost to make inroads, but like the Terminator it just WILL NOT STOP!!!

The reason i'm posting on this subject is because i'm convinced that there is a connection between the mind and physical illness. My P's started just after my sexual relationship with my ex began to break down. Having a past history of mental issues and depression, i was highly susceptible to an emotional crises over it, added to the fact that i'd never had a satisfying, close sexual relationship with anyone else before. Bearing in mind that i was 32 when i met her you can see that my teens and 20's were pretty rough. It doesn't take much working out to realise that i have spent most of my life sexually frustrated and unsatisfied. So when i had to confront this breakdown it was literally too much for me to take, and BANG!!!, Peyronies.......

Now, bear with me as i go off on a tangent. I have a friend who does Reiki, and she insists that my root chakra is completely messed up. Now before you guffaw and dismiss me as a loon, i sincerly believe that she is right. So ask yourselves: does anyone out there believe emotional and psychological imbalances can physically manifest in the body? Let me tell you, i do.

The thing that's worrying me deeply is that it refuses to stabilise. 2010 was a nightmare for me as we finally split up after 6 years, so the stress levels went through the roof, as did the Peyronie's. It's now so bad that it hurts nearly all the time. So far the curve is manageable, but i have zero guarantee that it won't get worse.

So my questions are: is it normal for it to continue progressing over 3 yrs after it started? And does anyone agree that by changing attitudes, lifestyle and thinking more positively one can heal this thing from within? I hope so, as this is completely demolishing my morale, not to mention the fact that my penis is bent AND hurts like hell!!!

Sorry i can't offer any solutions, this Peyronie's is a nasty bit of work...... It's a bit like trying to destroy an armoured tank by throwing tennis balls at it; not only is it futile, but the harder you throw the balls the further they bounce away, and the further you have to walk to pick the bloody things up just to start the whole useless process again!  :-\

So i'll leave you with a line from the Fun Boy Three: "You can try hard, don't mean a thing, take it easy, and then your chimes will swing.....".

Peace.  

GS

Justin,

I don't have any ideas about how your emotional state and peyronies interact, but if I were you I would get on all the recommended oral supplements as soon as possible and order a VED.

I have had this disease for 21/2 years now; it seems to be very stable and I haven't had any pain since I started taking Pentox.  I use the VED on a regular basis and have for close to a year now.

There is no known cure at this time, but I do believe using the oral supplements and the VED will make it tolerable.  It has for me and I think many of the men on this forum will tell you the same thing.  There is light at the end of the tunnel.

GS

crashbandit

Hey justin,

What have you tried for Peyronies Disease and currently on right now?

Also, I totally agree with mental troubles manifesting itself in physical problems. You should really try to be more positive. If you keep believing you are defeated, then you will be defeated. But if you believe you will beat this and have a great future, your chances go wayyy up, and plus it makes you feel better in the moment at the very least.

You should check out a book called, "The Secret;" they also made a film on the book, also called "The Secret". I know you probably don't wanna try a new thing and are feeling exhasted. But this is truly a good read on how to change your mind focus out of the gutter and more towards the sky, if you know what i mean.

Go to your library and do a quick flip though it and maybe "check it out" for a couple weeks.
Cheers

sgtnick

Because no one has all the answers and I have never read anywhere, could there be a correlation here?   Anybody know about this?