Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[John Rambo]

Hey guys, I was gonna post this in the history section, but I wanted replies and advice so I posted it here.

Age - 23

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 17

Very First Symptoms - I had been doing a lot of drugs around this time. Specifically methamphetamine (A powerful vasoconstrictor) and ecstasy. My diet and exercise habits were terrible, as were my sleeping patterns. One night on a large dose of speed I had rough sex for hours. My penis was rough and chafing for a few days after but I thought nothing of it.

Several months later I noticed when erect my penis no longer pointed straight, it was curved upwards. I had diminished rigidity. My erections were painful, particularly when under my clothes.


My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - The curve still continues to this day, but the pain has subsided for the most part. The only treatments I have used are diet and exercise, Vitamin E, Arginine (Sann Vasoflow) and fish oil. I think these to a large extent have helped with the pain, as well as increasing hardness. However the curve is still prominent. Sex is still possible, however I am limited to missionary position, and I have become timid during intercourse (psychological).


Where I am today, future plans - I've never been to a urologist, and I was hoping someone on this forum could recommend one in the Toronto, Ontario area. Any other comments or suggestions would be helpful.

And please no one lecture me on drug use/abuse... I am now well aware of the consequences. I don't do drugs, drink, or smoke anymore, and live a very healthy lifestyle.

[George999]

The simple fact is that the human finger is not as sensitive as other modalities, including visual inspection, for noting changes the penis.

Tim,  My own personal opinion on this is that ultrasound gets pretty close to the gold standard in determining what is actually there, since it can pretty accurately access tissue density, which certainly the finger can't.  Everything else is pretty subjective by comparison.  We know there is something there, but we don't know what.  Its like the difference between a tumor and a cyst.  They can be pretty difficult to tell apart.  Both can be felt and both can cause tissue distortion.  One is benign and the other is deadly.  Of course, in the case of Peyronies it is not a life or death thing.  But I am ever so glad I had the ultrasound, because now, finally, I know what I am actually dealing with.  And I really suspect that a lot of guys with really nasty Peyronies may not actually have a whole lot of tissue density going on and may actually be really responsive to Pentox in the right setting.  After all, Pentox has shown itself effective against even calcification in at least one well documented case.  The trick is to provide it with an environment amenable to its being effective.  I know some will find that a controversial statement, so go ahead, flame me, I don't care.  I just hope that someone will profit from digging deeper into what drives this disease.  - George

[jakesnake]

I have had something that concerns me about this disease and was wondering if anyone else has experienced the same thing. When I have an erection near the base of my penis is an indentation, at the point of this indentation my penis can bend to the left, right and towards my belly. When I touch it I can  make it bend to the right at 180 degrees and touch my groin with the head of my penis. It bends almost 90 degrees to the left and I can  make it touch my belly when I bend it inward. I am at a loss as to why this happens and I now know why I cannot insert it when I try to have intercourse. It just bends too easily. The weird thing is it is not painful at all and bends easily. It's almost as if it was made of rubber. I am very concerned that I will never have intercourse again because of this and I'm depressed about it.  

Has or does this happen to anyone here?

[Hawk]

Jake that is called the hinge effect and is not uncommon with Peyronies Disease.  I think a lay explanation is that the scar tissue prevents expansion of this area and therefore it is as if you have an erect penis with a flaccid base.  Some of the effect may be from the weakness of shape.  A cylinder is stronger than a dented or deformed cylinder.  Think of how an empty soft drink can can support a lot of weight until you dent the shape.  When you do, it easily buckles under a light load.  Even though the same amount of metal in in the structure, the shape determines how much it will support.

[jakesnake]

Jake that is called the hinge effect and is not uncommon with Peyronies Disease.  I think a lay explanation is that the scar tissue prevents expansion of this area and therefore it is as if you have an erect penis with a flaccid base.  Some of the effect may be from the weakness of shape.  A cylinder is stronger than a dented or deformed cylinder.  Think of how an empty soft drink can can support a lot of weight until you dent the shape.  When you do, it easily buckles under a light load.  Even though the same amount of metal in in the structure, the shape determines how much it will support.

Thanks Hawk...

Do you know if the is any hope for curing this "hinge effect" condition?

[George999]

I would add to Hawk's explanation something that I have been harping on lately.  That is that the problem may NOT be actual scar tissue, but perhaps simply localized stubborn inflammation.  If I were Jake, I would try to get going on ALC and, if possible, Pentoxifylline right away and try to get rid of the hinge.  I think there could be a good chance that this would clear up the problem.  - George

[AZHenry]

Peyronie's for 1 year.  Curvature upward almost 90 degrees.  I can get erections and cum with masturbation. NO intercourse due to pain and curvature. 60 yrs old. Uro says nothing can be done so I haven't done any treatments, devices or surgery.  Just waiting.  I am OK with my situation but am worried about not being able to pee if it gets worse.  I don't care about sex function only pissing properly and getting a good night's sleep.

Problem: I am getting very painful nocturnal erections that get me up 3 or 4 times a night.  First 4 hours of sleep are fine but then every 60 or 90 minutes afterward I wake up with very, very hard, painful erection.  My lower stomach muscles and groin muscles are sore, I assume from the erection prior to my waking.  Once I wait for a minute or two, I can piss when the erection subsides. Lately though, the erection is not subsiding and I can't pee for 3-4 minutes ...... while my penis is still with erection pain.  Eventually, my penis gets slightly softer and I am able to pee.  But then the almost hard penis stays hard for 10-15 minutes more and I have to concentrate on some problem I have to get my mind off my penis.  I know most of you are concerned with getting an erection but I am the exact opposite.  They are too painful to have IF I am not masturbating or getting oral from my wife.  I want to stop the nocturnal erections so I can get some sleep.  Lack of sleep will affect my total well-being.

Has anyone heard of this problem and have any suggestions on how NOT to get an erection at night?

[nemo]

Henry, check out the oral medications forum ... many guys have luck with Acetyl L-Carnitine relieving Peyronie's pain ... it's an over the counter supplement.  

Getting a prescription for Pentoxifilline (Trental, Pentox, etc.) should be in order, though you may have a tough time finding a doc who will prescribe it for Peyronies Disease.  It works on both addressing scar tissue and pain, to some degree.  

Even with the pain this is causing, I can almost promise you, you're better of getting nocturnals than not getting them.  The body is trying to get blood and oxygen in there, which ultimately, can only work to your benifit healing the damage from Peyronies Disease.  

The only thing I can think you might want to try is taking an anti-histamine like Tylenol PM before you go to sleep ... often anti-histamines work against erections.  Might give it a try and see if it helps, but I'd be reluctant to totally shut down your nocturnal activity.

nemo  

[jackp]

azhenry
IMHO you need another uro, one that is a Male Sexual Function Specialist.
These doctors are hard to find and a general practice urologist does not have the skills.
Let us know what part of the country you live in. Some of us may be able to lead you to this type doctor.
Jackp

[AZHenry]

JackP.
I live in Phoenix, Arizona.  I would appreciate any referrals anyone can give me!!!
Thank You in advance.
AZHenry

[AZHenry]

Nemo,
I know intellectually that having an erection is good for the area but the pain is getting worse.  Thank you for the Tylenol PM suggestion.  Will try it and see if it helps and let you know.
Thanks again,
AZHenry

[Hawk]

AZ,

First, it is important that you know that the pain period seldom lasts more than 8-18 months even if you do nothing.  Next, you will not get to the point you can not urinate from Peyronies Disease.

Last of all. please do not color your posts different colors.

Thanks and good luck.

[AZHenry]

Hawk,
Thanks for the info on the pain, I hope you are right.  
And the post color is out.
AZHenry

[George999]

AZHenry,  If you are in Phoenix,  My recommendation would be to see a local Urologist in Phoenix as soon as possible and request from that urologist a referral to Dr. Tom Lue in San Francisco.  He can prescribe Pentoxifylline for you which is a safe, easy to take, generic, effective treatment for Peyronies.  Based on your condition, he may have further recommendations for you.  But he is reasonably close to you and is one of the best out there.  I believe you might be able to find someone very good in Los Angeles as well.  But I have seen Lue and his team personally and found them VERY helpful and can personally HIGHLY recommend them.  It was a full day bus trip there and back for me, but it was well worth it.  I feel like it really got my moneys worth.  - George

[ohjb1]

George - you mentioned Pentox. Do you find it helpful for pain or curvature correction or both?

[Tim468]

ohjb1

If you search the forum for "Pentox", you will find a wealth of information on how it works and what it does. In brief, it is more likely to help with the curvature than with the pain, but that may be simply because the pain usually goes away fiarly early in the course, and Pentox is started long after the pain has gone away. It may help pain as well.

Tim

[Snader]

Hey guys!

In may I felt this hard cord-like thing on my penis, it's about 1/2 inch long. Sometimes I can feel it, sometimes i feel it like a bb pellet, and sometimes it's not palpable at all. So a few months back I went to my Doctor to get it examined. At that point he couldn't feel anything, so he told me not to worry about it.

So now it's september and I'm beginning to worry. I still have this hard cord-like lumpish thingy, and I'm wondering if it could be peyronie's, I have no bend or deformity, just this hard lump that sometimes is palpable and sometimes it just seems gone.

[Tim468]

Hi Snader,

Sometimes we get vascular problems to the superficial veins on the top or side of the penis, These feel like tubular lumps and may resolve spontaneously. An important thing is do you feel that this lumps is freely movable within the skin or the penis or is it "fixed" to the side of the penis? If it moves, it is not Peyronie's at all. If it is fixed to the side, it is probably deeper from the surface and therefore more likely part of the tunica (the tunica is the part of the penis that feels "hard" when you are erect and creates the tube inside of which the blood is captured).

Tim

[George999]

Significant Alterations of Serum Cytokine Levels in Patients With Peyronie's Disease

The significantly elevated serum level of the profibrotic TGF-Beta1 cytokine underscores the effect of cytokines in the pathophysiology of Peyronies Disease. The significantly decreased TNF-alpha serum level suggested no acute immunomodulatory process. Therefore, the relevance for therapeutic administration of TNF-a should be further investigated.Quantification of TGF-Beta1 in serum of Peyronies Disease patients provides a possible diagnostic tool and target for therapy. The data on altered cytokine levels in Peyronies Disease patients also provide a new understanding for etiopathogenesis of Peyronies Disease, which warrants further investigation.

I think this is REALLY an amazing discovery, both as it relates to diagnostic possibilities AND treatment possibilities.  The million dollar question at this point is this:  Is high serum TGF-Beta1 levels CAUSING Peyronies OR is it the other way around?  - George

[Iceman]

GEORGE999 - if this is the case what can we take to reduce high serum TGF-Beta1??

Cheers

[George999]

I'm not sure there is anything at this point that will reduce high levels of serum TGF-beta1.  But for sure you can block at least part of its effect with Pentox.  To me, this study only further validates the use of Pentox.  AND, it actually opens a new door for treatment.  It infers that boosting TNF-Alpha (there is at least one drug that can do that) should be helpful as well.  Considering the fact that we have long assumed inflammation to be the enemy, boosting TNF-Alpha is very counter-intuitive.  This study also causes me to reconsider the use of mangosteen, at least using very much of it for very long, since mangosteen inhibits TNF-Alpha which is NOT what we would want to be doing.  And all of this is not to mention the fact that this discovery opens the door for a simple blood test to diagnose Peyronie's and possibly susceptibility to Peyronie's in the first place.  I think this is a really big discovery.

[Iceman]

GEORGE999 - what about ALC and L Carnisine??

[George999]

They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George

[Aoli]

Edit: Consulting another doctor about my case at the moment.  

[Iceman]

GEORGE999 - now i am confused you said:' They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George'

what do they in fact do then?

many thanks...

[George999]

For one thing, they are both powerful antioxidants.  They are able to quench tissue damaging free radicals that are produced by Peyronies.  ACL also protects cellular mitochondria and Carnosine protects the extracellular matrix from the effects of glycation.  All of this is not completely understood.  But ALC has been shown to be effective against Peyronies and L-Carnosine *should* be helpful in dealing with Peyronies.  - George

[Hawk]

I agree and have repeatedly recommended ALC, due to this study, personal and anecdotal reports, and the theory behind it.   I would say however that the one very small study falls far short of establishing its effectiveness with Peyronies Disease   It was never duplicated to my knowledge (like many Italian studies).

[Ralf3]

They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George

And is there anything else, that affects cytokines like Pentox or Mangosteen? Any supplement or combination of supplements ?

[George999]

I agree and have repeatedly recommended ALC, due to this study, personal and anecdotal reports, and the theory behind it.   I would say however that the one very small study falls far short of establishing its effectiveness with Peyronies Disease   It was never duplicated to my knowledge (like many Italian studies).

Hawk, how many studies on anything pertaining to Peyronies have ever been duplicated?  The bottom line is that there is not much real evidence out there backing ANY of the array of treatment approaches.  Therefore, we are pretty much stuck with something is better than nothing.  - George

[George999]

They work by a different mechanism.  They are definitely effective to a degree, but they don't actually affect the cytokines directly like Pentox and Mangosteen.  - George

And is there anything else, that affects cytokines like Pentox or Mangosteen? Any supplement or combination of supplements ?

When it comes to directly dealing with cytokines, Pentox is the only option I know of.  It systematically inhibits TGF-beta1, and that is a good thing.  While Mangosteen also seems to inhibit TGF-beta1, it is also known to inhibit TNF-Alpha which we now know is a bad thing when it comes to Peyronies.  However, I am now exploring another possible option.  That would be Vitamin D3.  Vitamin D3 tends to lower levels of TNF-Alpha also, BUT it does so by making TNF-Alpha more effective.  TGF-beta1 in an inflammatory cytokine that encourages tissue accumulation and is associated with fibrosis.  TNF-Alpha is an inflammatory cytokine that encourages tissue dissolution and is associated with diseases like rheumatoid arthritis that involve actual tissue loss.  The two tend to balance each other in the normal human body.  Thus, with Peyronies associated with a deficiency in TNF-Alpha, D3 sounds like it COULD BE a good thing to me.  And with D3's growing reputation for balancing the immune system AND the increasing realization that many people are deficient in D3, this could prove a useful supplement.  I have been taking 1000IU for quite a while and am now increasing that to 2000IU which is a bit much, but I will try to be on the look out for any bad effects.  Hopefully, I will be able to convince my doc to get me a blood test in November to check for any out of range calcium levels or other bad side effects.  - George

[Ralf3]

Very interesting thing this D3...

George999
I have been taking 1000IU for quite a while and am now increasing that to 2000IU which is a bit much, but I will try to be on the look out for any bad effects.

http://www.vrp.com/articles.aspx?ProdID=art2130&zTYPE=2

http://www.vrp.com/articles.aspx?ProdID=art2130&zTYPE=2
Due to Vitamin D3's high safety profile in doses up to 10,000 IU per day and because of the wide role it plays in our health, consuming 2,000 to 4,000 IU per day of this nutrient at times of the year when sunlight is scarce is a prudent way to improve overall health.

R3

[snowden]

Hi, I just want to start by thanking everyone involved with this web-site, especially the more knowledgeable members from whom I've already gained far more information than I did from two different urologists.

From browsing this web-site in detail I already have a plan to begin taking supplements such as acetyl L carnitine, l arginine, fish oil, and hopefully to obtain a prescription for Pentox.

My peyronie's started two and a half months ago while having sex.  I remember the moment vividly that I bent the wrong way and felt a sort of tearing.  Since then it's been very stressful. My girlfriend has been very nice so far, but even though I've explained it to her somewhat and had her read about it online, I don't think she understands the long term implications and I don't want to scare her too much right away.

The only thing I've been prescribed by a doctor is topical verapamil from PDlabs in Texas.  Through the search button on this web-site I find some mention of it not being very effective and not much about it being helpful.  The guy from PDlabs talks like it's a miracle cure.  Do you think I'd be wasting my time and money (it's very expensive and my insurance won't cover it)?

Thank you very much, and let me know if I should be posting this somewhere else or in another way.

[Tim468]

George,

Reading the abstract (it is late and I will look later at the article), I do not come away with the notion that TNF should be given to help.

TNF is a potent pro-inflammatory cytokine, and it up regulates others in cascades. It is rightly called an "immunomodulatory" cytokine - but that does not mean that it's absence has let the others run rampant (ie it is not doing it's job to regulate the others). Instead, there may be a wholesale disruption of the entire mechanism for inflammation and repair, that leaves us with low TNF and high TGF.

It is interesting. In experiments I and some colleagues did, when we infected animals with bacteria, the TNF release was immense, and led to very strong changes that led to death frequently within hours. TNF was first called "cachectin" because it was associated with destruction of muscle leading to wasting in chronic illness like Leshmaniasis or TB. Like all cytokines, it plays a role in healing, but when it is dysregulated, it wreaks havoc in the body.

Tim

[Iceman]

TIM468 - what do you think the benefits are of usine Carnosine??

cheers

[George999]

Tim,  Thanks for the additional information.  I think the more appropriate place to discuss the supplement side of this issue is on a supplement by supplement basis on the oral treatments thread and I picked up there on that.  As I stated there, I do think that the more important way to "help" TNF-Alpha is probably not by blindly increasing it in amount, but by making it more effective and more targeted toward doing its job and NOT wreaking havoc in the body, and most of the supps I pointed out tend to reinforce that agenda.  On the other hand, probably the most valuable take away for me with this study is the revelation that, for sure, Peyronie's is associated with a much broader systemic syndrome going on in the body metabolically in terms of a really screwed up immune system.  NOT necessarily a weakened immune system to be sure, but a severely imbalanced immune system.  When I pointed out this study in the first place, I did so because I thought we would all benefit from a discussion on these issues, and I really, really, appreciate your expert thoughts on this whole process.  Thank you so much Tim!  I don't know what we would do without you.  You are such a valuable asset on this forum.  - George

[Tim468]

Iceman, I think of carnosine as a beneficial supp for regulation of glucose metabolism. I am not where George is yet, but I am trying to get there vis-a-vis exercise and diet. I am increasingly concerned that testosterone plays a regulatory role in promoting the metabolic syndrome and that my lower than average levels are making it harder for me to get my blood chemistry in order. Also, it makes it harder to get up and go, and for exercise to benefit me (ie help burn calories and build muscle.

Tim

[Iceman]

TIM468 - is the regulation of glucose metabolism caused by the use of carnosine beneficial in the treatment or at least helpful in negating/reducing pain + inflammation assoc with Peyronies Disease  

[jackp]

Tim
I have a very low testesterone level. B/4 peyronies in 1995 I asked my GP to check it but he thought it was not necessary. I know now from my symptoms that I have had low testesterone for at least 30 years.
Also after my heart stents 10/06 doctor had me on Vytorin and it lowered my total cholesterol to 89. I read somewhere that a man should have at least a 150 reading to have enough fats in the blood to circulate hormones. I quit vitorian and my level came back to 157. Felt much better and the testesterons shots worked much better.
Could this be a link to peyronies?
Jackp

[Tim468]

Iceman - I do not know the answer to that - perhaps George can chime in.

JackP - I absolutely think that a lower than average testosterone can contribute to Peyronies Disease - but it has not been proven yet.

Tim

[George999]

Concerning the current round of questions I can tell you all how I feel about it.

1)  I believe diseases like Peyronie's are "caused" by a confluence of multiple factors that may vary somewhat from person to person.  Various things set the stage systemically and then a minor mishap and due to the systemic anomalies normal healing does not take place and aberrant inflammation and fibrosis set in.

2)  I DON'T believe that there is any one "silver bullet", at least not yet, that can resolve Peyronie's.  There are a number of things that I believe CAN be helpful.  But no one thing in isolation can do the job.  Likewise there is NO one thing that by its absence will hugely hinder your fight against Peyronie's.  I think some are dying an early death simply because they can't get access to that one substance that will magically "do the job".  Regrettably at this point there is no such "silver bullet" out there and probably won't be for a long time even though there are exciting new things in the development pipeline.

3)  There ARE a string of things that can be helpful.  Pentoxifylline, Acetyl L Carnitine, Full Spec Vitamin E, and the VED can be helpful in a MAJOR way.  There are other things that can also be beneficial.  Among them are SAN VasoFlow, Horny Goat Weed,  Mangosteen and such.  There are also some things that may not be particularly helpful, BUT may be particularly harmful in terms of Peyronie's IF you are deficient in them.  I am referring to things like B Vitamins, L Carnosine, and Vitamin D3.  There are others.  In these cases, one can often get just as much benefit by taking, for example, one or two pills a week of these things rather than three a day.  The point is not that they are somehow therapeutic, but rather, since they have anti-fibrotic characteristics, we want to make sure we are not DEFICIENT in them.  Lately I have been pounding on D3 simply because it is being tied to more and more maladies AND researchers are discovering that huge numbers of people are simply very deficient when it comes to D3.  It turns out that there are studies indicating that D3 both upregulates TNF-Alpha (an inflammatory cytokine) AND is anti-inflammatory at the same time.  That makes it pretty unique.  It does this by performing as an immunomodulator which focuses TNF-Alpha's wrath on the bad guys rather than allowing it to run amock.

4)  Food is a biggie also.  No adays we KNOW that high fructose corn syrup, for example, CAUSES diabetes.  Enough said.  We shouldn't be putting such things in our bodies.  I could go down a list.  And from food, we could go on and on.  Smoking, excessive drinking, recreational drugs, abuse of prescription drugs.  Hello?  Sorry to be preachy on this, but none of these things are going to help your Peyronie's issue.  And I KNOW it is at times virtually IMPOSSIBLE to implement a healthy diet and lifestyle in our screwed up world so I don't think becoming fanatic about these things is a solution either.  But the more of these things we can get right, the better our chances of recovery or at least not getting worse.

5)  It goes without saying that we are all different.  So what works for one might not work for another.  And what is more beneficial for one might be less beneficial for another.  What is attainable for one might not be attainable for another.  We all have to do what we can with what we have to work with.  But I AM VERY CONFIDENT that most of us can attain a measure of success in dealing with Peyronie's until, before very long, more tools become available to us.  There is a lot of reason for hope and optimism.  I know I have months of gradually getting better at times only to hit a spot where everything seems to be falling apart.  But then you reposition yourself and start over again.  This has enabled me to beat back the effects of Peyronie's over and over and you can achieve that too as many of you already are.

6)  Iceman, I don't know what to tell you regarding Carnosine.  I certainly don't think it is something you need to take daily to derive benefit from.  But I believe personally that a deficiency in Carnosine (which is found in certain meat products) makes one more vulnerable to Peyronie's.  There is at least one study out there that I have previously cited which indicates it to be beneficial in terms of general health.  It IS an essential nutrient.  You DON'T want to be deficient in it.  Thats enough to make me want to be taking it.

I could list a lot of other points, but these are the ones that come to mind at the moment.  - George

[Tim468]

George - a great post - this should be mandatory reading for every newcomer to the boards!

Tim

[didi20031]

Hi @ all!

First at all thank you very much for this great forum!

I am a (nearly) 34 year old guy from Austria (so, sorry for my bad English) and I was diagnosed with Peyronies Disease one week ago. You all can imagine how I feel at the moment! In the last days I read a lot of posts in this forum an also some of the scientific articles and useful weblinks which are quoted here. However, I am quite confused by the large quantity of different information and I still have some questions... I hope you will try to help to answer at least some of them...

I am going to post my detailed history in the respective section in the next few days too. At this point I would like to give you a summary:

It all started in the middle of July, when after some days of frequent and prolonged masturbation (I was on holiday and my partner had to work...   ) suddenly I felt a mild pain and discomfort in my penis when erected. I thought that would go away after some time and it really got a little better, but didn't go away totally. After about a month I noticed some kind of a nodule directly below the head of my penis. It has the form of a half ring parallel to the sulcus going from top-right down to the frenulum. It felt like a large hard vein or other vessel. I started to do some research on the www and made an appointment with an urologist. That was, when I first read about Peyronies Disease and I started to panic. From that moment I had a great range of different symptoms that – I suppose - were not all related to Peyronies Disease: pain in the flaccid penis (also the contact with my trousers caused discomfort), pain in the groin, pain in the testicles, a kind of deafness of my gland, pain in the rectum, discomfort while sitting, pain in the lower back, missing libido and ED, frequent urination (for 2 days), burning of the urtethra during and after urination. Every day there seemed to be a new "surprise" while other symptoms left (or nearly). I think (hope) that i.e. the ED was/is a psychological effect.

After the first check by an urologist, who told me that he could not find anything neither palpating nor using ultrasound I was so happy. He couldn't tell me where my problems came from but he assured me that it was not Peyronies Disease. I found out later that I knew more about Peyronies Disease than he did...  

Last week I had another check at the university clinic and the doc said it was Peyronies Disease by palpating (no ultrasound). I had done my "homework" on Peyronies Disease before and so I knew about different, more or less promising, treatment options. I asked him about pentox and he told me that it was not an accepted treatment for Peyronies Disease in Austria and so he was not allowed to prescribe it. However, he told me talk about it with my GP. Since I am "lucky" and suffer from tinnitus, she was able to prescribe the pentox.

In the last days I did some additional research on Peyronies Disease and other possible diseases of the penis and I found a disorder called sclerosing lymphangitis (SL). I am wondering/hoping if the uro at the clinic was wrong and SL would be possible?!?!?!

After two and a half months after onset (I know, it is a very short period for Peyronies Disease) I am still optimistic about my situation. Things didn't get worse and the pain of the flaccid penis is nearly gone. It mostly comes back when I am very nervous, when I am relaxed it's quite ok. Tonight I woke up 4-5 times with an erection that was quite good and did not feel too bad. I avoid masturbation at the moment in case that I really have a SL. I take 2x400mg of pentox, 2x 400IU of vitamin E and 2x1g of ALC per day in case it is Peyronies Disease.
Up to now there is no curvature, maybe a little indentation during erection where the nodule is located, but I could not tell for sure if it was there before, or not...

Ok that's where I am at the moment. Here come my questions:

1) Can all my symptoms come from Peyronies Disease or should I consider a check for other diseases? I also read about chronic pelvic pain syndrome. Could it be that I have won the jackpot and suffer from both?? Anyway, I don't exclude that some symptoms are psychological effects...

2) How can Peyronies Disease and SL be distinguished? Three days ago I noticed something new: some kind of a thin hard vein or other vessel which goes straight from my nodule, over the whole penis shaft to the basis. I cannot tell where it finishes, since it enters into the groin. Is this a typical side-symptom for Peyronies Disease??

3) The uro told me to just "wait and see" (that's what many of you guys heard too). After a few months the disease stabilizes and if there should be really bad deviations one can still correct it surgically. After all the histories I read in this forum: Has anybody here really reached a stabile phase?? It seems to me that the Peyronies Disease in all cases proceeds and proceeds! When can surgery be done if it doesn't stop?

4) Is it normal that the nodule I have is sometimes harder and sometimes softer? When my penis is really relaxed I only can feel this blood vessel-like string below the head of my penis and the endured vein running from there to the basis of the shaft. When I am very nervous or when I am cold the penis shrinks (that is normal) and then the lump feels much bigger and harder...

5) I read about what is the effect of pentox in Peyronies Disease treatment, but I still don't understand what is the role of ALC?!

6) When I feel pain in my flaccid penis it is mostly located in the gland and not in the shaft. My uro said that should not be because of the Peyronies Disease, it's more likely to be caused by a neurological problem, maybe due to problems with the spine. What do you think about it? Where do you feel pain? Directly at the site of your plaques or even in other parts of the penis?

7) And last but not least a question that we all want an answer to, but nobody has good one: Why me???  

Sorry that I bombard you with so many questions. Maybe some of them have already been answered in the forum. I read a lot of postings in this forum, but I still have the questions above.

Thank you all so much in advance for your patience and your help!
Best wishes to all of you from Austria!
 

[alcohen]

I have to run to class right now so don't have time to answer all the questions but I will come back later to answer some if somebody else hasn't responded.  I just wanted to say that your symptoms and progression sound identical to mine.  I have the strange vein type thing that comes and goes and goes down into the base.  It also changes depending on if I am nervous or relaxed with some blood flow.  I have the pain when my penis brushes against my boxers (I turn them around backwards so my penis does not brush against the material that is present on the hole on the front.  it doesn't solve everything with that though) Also, I lot of my pain is in the glans too...  I was told by two doctors as well that I definitely did not have Peyronie's disease.  I am waiting on an ultrasound from the third who said that it sounded like I had Peyronie's disease.  Also, my problems started after having prolonged masterbation from my girlfriend so the onset is a similar fashion to yours...

Good luck with everything.  I am sorry that you are suffering from something that sounds like Peyronies.  It has been four months since onset for me.  I have been on Pentox for 7 weeks.  

[LWillisjr]

alcohen and didi20031,
I agree that both of you have very similar systems. And I very strongly believe that you both have suffered some type of damage to your penis. While it seems to me that neither of you were doing anything other than what I would consider normal masterbation, it is hard for me to understand how this damage was caused. AND....... I don't think either of you have Peyronie's Disease. You do have similar symptoms to what has been posted on this forum, but not everyone on this forum has Peyronie's Disease. It seems that we are trying to broaden the definition of Peyronies Disease to any unusual pain or penile irregularity. Don't get hung up on whether it is Peyronies Disease or not. Both of you need to get to a sexual specialist and get a proper diagnosis. Just don't sit still for ANYONE who tells you "wait and see" or "nothing can be done".

didi20031,
I don't have comments on all your questions, but will respond to your question 3. I think there are many guys on this forum who have reached "stability" with Peyronie's. The plaque does stabilize and will then start to calcify. Once calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option. I know it sounds scary, and is a last resort, but I did have the surgery and it cured me.   And by the way..... your English is fine    

[newguy]

Once calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option. I know it sounds scary, and is a last resort, but I did have the surgery and it cured me.   And by the way..... your English is fine    

Out of interest, do others here agree or disagree with the statement in bold? Btw, I'm not saying that surgery isn't a good option, because at times I can see how it can be.

[Tim468]

 It's more complicated than that.

Calcification implies progression, and sometimes, stability. That lends to a surgical cure. OTOH, if you are still active and progressing, then surgery will offer a setback as often as a cure. Stability with or without calcifications is the key, IMO.

I note that calcifications were noted to regress over two years with treatment with Pentox in the first report of it I ever read.

Tim

[George999]

Once calcification begins, uro's who do know what they are talking about will tell you that neither meds, traction, VED's, injections, shock wave therapy, etc will counteract Peyronie's. It is possible to get to a point where surgery is th only option.

I really don't understand how talented, highly trained professionals can make these kinds of assertions.  This is what is known as a "generalization" and using it on patients is not fair to those patients.  Its like the oncologist who lectures his patient with the "You must understand that you will die from this disease."  Why not error a bit on the side of truth and instead say "You most likely will die from this disease." or "Once calcification begins it is usually irreversible without surgery."?  Why do physicians try to act like God in these situations?

Tim gores the ox in his comment below which points out the actual Pentox paper.  The reality is that given the right environment, the body will heal itself every time from every malady under the sun.  The fact that the body is not healing itself tells us that something(s) abnormal is/are going on.  I remember like it was only yesterday that all the top specialists were insisting that damaged heart muscle, for example, could never heal.  Another stupid statement.  Then they happened to do a heart transplant without removing the old heart.  To their surprise, the old heart healed up and become normal.  Duh!   Just because they haven't been able to achieve it, they assume it to be impossible.  Its a God complex.  It never crosses their minds that they perhaps just haven't yet discovered how to achieve it.  I know people who have beat cancer.  There are not many of them, but they are around.  I am not saying these things are simple, I am only saying that given the right circumstances they can happen.  And it should be the physician's challenge to help their patients achieve those right circumstances.  Unfortunately though, most physicians seem to have been beaten down by the system to the point that they just tell their patients when its time to give up and die.

Hopefully any doctors looking on will forgive me for this rant.  I don't actually hate doctors.  I really hold them in high esteem.  I think they are over worked, under paid, and often under appreciated.  But there are a few areas where some of them really need to reassess how they deal with their patients.  - George

[didi20031]

alcohen and lwillisjr
thank you both for your replies! I am really grateful for every comment that could be of help!

lwillisjr
maybe it is peyronie's, maybe it is not. Anyway, the official diagnosis of the university clinic is that it is peyronie's. The nodule in my penis tells me that it is peyronie's. The pain during erections, which was the very first symptom, tells me that it is peyronie's. Other symptoms tell me it is not... My instinct says that it is peyronie's. The first symptoms (pain and later the nodule) were so characteristic for this disease. All the other problems started after hours and hours of research on the www and my selfdiagnosis: Peyronies Disease. That's why I think that my first uro may be right  partly. He said: "It is all in your head!" (Does it sound familiar to anyone?) Yes, it is possible that my panic (and during the first weeks I really, really was in PANIC) caused all the other "unexplainable" symptoms. It may sound weird to you, but when I finally had MY diagnosis (Peyronies Disease) confirmed by the uro at the clinic I was kind of... relieved!! I said to myself: "Ok, now you now what is wrong with you and you can start to fight against it. You may lose the fight. You probably will! But you know your enemy now and you can fight him!" At that point some of the most severe symptoms started to improve. E.g. nocturnal erections had nearly stopped, now they are back. The sensitivity of my gland is getting better from day to day... I started to take ALC four days ago and this morning I had my first erection for weeks that did not hurt too much. (Thank you for the hint, guys! I have taken it from this forum!!) What remains unchanged by now is the lump, but my GP agreed on prescribing me pentox (official version: against my tinnitus) for the next 6 months. So hopefully...

And...

And by the way..... your English is fine    Wink

Thank you!!   I guess my writing skills are a little better than my spoken English...

Didi

[newguy]

At that point some of the most severe symptoms started to improve. E.g. nocturnal erections had nearly stopped, now they are back. The sensitivity of my gland is getting better from day to day... I started to take ALC four days ago and this morning I had my first erection for weeks that did not hurt too much. (Thank you for the hint, guys! I have taken it from this forum!!) What remains unchanged by now is the lump, but my GP agreed on prescribing me pentox (official version: against my tinnitus) for the next 6 months. So hopefully...

AT least it sounds like you are experiencing some positive changes right now, and are taking powerful steps to combat your condition (ALC, Pentox). Keep us informed of any future developments .

[Hawk]

Didi,

The link you posted in the "Off Topic" area for the book on pelvic area pain indicates much of the pain in the area or the anus, testicles, pelvic area (of both sexes) is the result of muscular pain.  The overview of the book suggests much of that is a result of protective responses that over tighten muscles and that stress is a factor.

If that is taken as true, then it would follow that along with the initial stages of Peyronies Disease and research that your worry and stress caused secondary symptoms to kicked in.  

It at least has to be considered.

Good luck!