Progression of Peyronie's Disease

[Hawk]

Ricco my friend.  You are truly a delight, but I must respond to your quote:

I have read articles on pentox from years ago, one study was back in 2000, this has been around awhile...   ...yes one has to stop the inflammation...but is this the best choice....maybe a couple of Epsom baths will do this...diet, taking a hard look at your lifestyle, what makes you feel good, bad, what foods work for you ect....

If we function from "maybe" we can put anything after that phrase.  For instance, we could say "maybe Epsom salts will worsen the disease", or "maybe taping an aspirin tablet to the area over the plaque will effectively treat Peyronies Disease".  These would be pure unsupported speculation with no basis.  Pentox has a number of studies and some of them show significant evidence (not proof) that pentox is effective.  We take on a Great responsibility when we take a studied treatment with evidence and strong theory, and compare it to a substance that has absolutely no studies, and very little scientific theory for having any impact on Peyronies Disease.  In fact there is not even one single bit of anecdotal evidence that Epsom salts would impact Peyronies Disease and anecdotal evidence is the very weakest type of evidence.  It cannot be responsibly compared to properly conducted studies.  Newbies my well reject the most promising thing going based on  a post that equates a wild guess as having equal status to clinical studies.  If I am wrong and you have one piece of evidence that it has ever had any impact on anyone's Peyronies Disease then please correct me my friend.

I encourage all to study (not just read) this page and to then weigh every post based in the light of this information. http://www.peyroniessociety.org/evaluating.htm

Enjoy your reading and enjoy your soaks, but I caution you to be careful about elevating those soaks to the status of a studied treatment, with real evidence that it could be effective in treating Peyronies Disease.  

[Tim468]

ComeBackid,

I know of no-one here who has taken Pentox - at least not for long (we might have one or two who have started it). The reports in the literature are intriguing to me because they are long term reports (several years) on people with either longer term disease or progressive terrible fibrosis (and it helped them both), and also because some of the better urologists are starting to try it.

For me - that is enough to try it (in that way I am like you). It is very discouraging to feel that you are trying yet another thing that might help, and to know it might not.

But what is the choice? Do nothing? Hell - I even sit in Epsom salts sometimes...

Tim

[ComeBacKid]

Tim,

I'm much more cautious then I first was, ALC, TV, and IOntophoresis all had "medical studies saying they work, some of them with high efficacy rates."  I'm not ripping pentox, it probably can't hurt, but there seems to be a lot of "theory," around it, and how it might help.  Did those studies show that it caused anti fibrosis specifically in the penis for peyronies disease?  How much is the drug per month?  I've already spent slightly over $2,000 and will be spending more soon when I go to see Dr. Mulhall, I"m going to ask him about pentox and see what he says. Can you post the old medical studies on pentox, I'm going to search from them on the forum if someone already posted them, I'd like to review them.

Thanks

[Fighter]

Rico,
I am 48 years old and I have been taken 2 grams of Arginine,1.5 grams of ALC, 800 IU Vitamin E, (1 Mega Man Vitamin GNC) 60 grams of 100% Whey Protein,about 110 oz of water, & 5 grams of Creatine. As far as my diet consist of Chicken, Beef, Salads, Rice(flavored), Pasts & Veggies. I do on occasion eat fruits and nuts but it is not part of my daily diet. Overall I feel pretty good I lift weights 4 days per week. Like I said before my Peyronies Disease seems to be in check... some days better than others but seems to be more good days than bad. I don't think my Peyronies Disease is that bad... 15-20 deg. to the left and a hard lump on the bottom right near the gland. Almost in the gland? I have had it for a year now! Very little pain... some days no pain. Sex is not a problem but I sure would like it to be better (Harder & last longer). I seem to lost some length but not girth. Thanks for your opinion!!!!

If you are into weight training and your peyronies is stable, maybe you are taking the right amounts of argininge and alc....your age and diet are another factor....red meats and nuts and raisins are full of amino, and especially arginine....talk to some of you friends at the gym or a trainer and find out what they are taking, If you want to tell me more about you diet, age...ect...I will tell you what I would take if I was you....I don't take protein supplement, like a soy or egg base, mine is more for muscle gain and oxygen pump and tissue recovery, but most of the good ones are along these lines, some choose to use one or two different amino acids to compliment the other, but once again, you can get redundant and these blends are going after the same results....mine doesn't have alc in it, so I add that for instance, but I think I will go with maybe the vasco that zig is taking next time, What so you think of it Zig The Twig?

Rico

[Rico]

Hawk,

I agree with you. I do believe we need to make this forum a place where urologist and the medical community can come and feel welcomed and also find a mature audience to discuss this disease/condition of peyronies with...."The Needs of the Many are More than the Few".

I went on another peyronies forum, and it was terrible, immature people, lots of pissing matches going on and I read a couple of post and left, and haven't been back....

Sometimes I do ramble with my heart and gut feel, and this isn't a good case to hang ones hat on, I will try to refrain from this in the near future.....Thank you for bringing this to my attention, you are true leader and this forum is a place we can all come as brothers and work together to achieve our goals...

God Bless.....

Rico

[falcone]

I fell like my curve has slightly healed itself at the expense of around an inch in the last month or so? is this possible?

or are there other reasons for a reduced erect size?

[ComeBacKid]

Falcone,

After 7 years since my sports injury, it is clear my peyronies is progressing, just recently my penis shrunk and became hard all over.  It appears as if my scar is contracting and healing, I to have lost about an inch in erect and flaccid length, I've also lost girth as my penis has narrowed substantialy.  I no longer get daytime erections but I can get one from sexual stimulation or self manipulation.  Have you noticed as you lost size that your penis has hardened as well, and in the flaccid state?  My ask the doctor questioned has been answered by Dr. Levine over at the APDA site. I've also lost much elasticity of my penis, when flaccid its hard, almost like a rock. I fear the worst if the progression continues, its hard to tell if the disease has spread, or if the original scar has just healed itself by shrinking and contractng.  

ComeBackid

[Cindy]

Hello All,

I have been a participant in the ladies' room and have thoroughly appreciated the opportunity to talk to others.

My significant other has had peyronies since last Dec-Jan. The condition has continued to worsen, the plaque has gotten bigger and there is a small curvature. The pain for him makes sexual intercourse intolerable.  

Three questions:
1) How long will the pain last?
2) Could this condition be permanent?
3) In terms of treatment he has a good diet and does regular exercise. In addition, he is presently on bromelaine, ACL 1500 g, Arginine 500 g, Vitamin E 400g, and 1 Advil per day. Are these the  proper doses?

Any advice would be very helpful!

Cindy

[Tim468]

Hi Cindy,

Glad you are here.

The regimen sounds good. Many of the therapies that people here sort of dislike (because they do not cure Peyronies Disease) are still good at getting rid of the pain. But the natural history of Peyronies Disease without much treatment is that the pain *usually* goes away.

I assume that your man has had a good exam and evaluation by a doctor - right? If not, it is definitely worth more digging for a therapy that might accelerate healing from pain, and to rule out alternative causes (all very rare).

The regimen described sounds fine to me (I assume your doses are milligrams and not grams!). You might consider taking advil 800 mg (4 tabs) three times a day for two weeks, and then going back to a lower dose based on whether or not the pain gets better. Also, warm soaks in baths can help pain.

The boards have several reviews of alternative treatments - some include ideas like iontophoretic application of verapamil, or propionyl L-carnitine, which taken together can relieve pain well usually.

The key word here seems to be "usually" (or in some of our cases that is "almost never"). If I were him and had a single area of placque, i would start massaging it and stretching it with a VED.

Tim

[Liam]

I have seen recommended 2000 to 6000 mg L-arginine per day.  I am taking 2000 mg three times a day for a total of 6000 mg.  This is just what I do.

The 800 mg advil with hot baths helped me,too.  I also use a VED.

Also, read up on pde inhibitors and the role of NO in an erection.  This is a promising area for Peyronies Disease as well as erectile dysfuntion (ED)

[falcone]

Well i went to see the doc as u guys said and asked to be referred to a urologist, but my GP said that my curve is normal. I know you guys warned me about him saying that but for some reason i accpeted it. The thing is my curve hasnt gotten worse infact i feel as if it has reduced itself, but i fell both my erect and flacid size has been reduced in the space of around a month, is this possible in this short time or am i just being paradoid but it relly looks like it has

thanks in advance guys

[Rico]

falcone,

I think it would best to see a Urologist, for the reason that you can't get your mind right when you don't know....I was in denial and a nervous reck, there is something about ones unit shrinking that will put a fear in the bravest man...it shock me to a point that I can't even describe, when the doctor told me I had peyronies(urologist), believe it or not, I felt better, of course I wanted him to say I didn't and that would of been the best answer, but the waiting was over...I spent two months reading and hoping it was stregtch ligaments or something....
The tunica loses it elasticy, and with this come lost of size...until VED came along, you were out of luck even if you plaque went away in most cases of gaining back your lost length...
Sit down with pen and paper and fill out all your smyptoms and get the most from your visit with a Urologist, call and see if he has peyronies clients ect....most do....treatment usually works best in the early stages, so don't wait, just making the appointment is being pro active, I feel for you and know it is very trying on your mind and the feeling of this run deep, get to the bottom of it and then you can start a plan to heal yourself, stress will make it worse, I must of looked at my unit a hundred times the first month, I was a wreck, I still hate it, but I feel there is hope with the forum and VED..... I haven't accepted it yet, but I have accepted I have it and I'm the only one who can try to remold it.......I just want to add that I don't want to come across as though you have peyronies for sure....but you do need to find out now.

God Bless You....there is hope with some of the new things going on and it sounds like yours is a case that could have some hope since you caught it early and it isn't as bad as some....

Rico

[Liam]

Falcone,

I read your all your posts again because I believe your questions to be important.  If a doctor has given you an examination and determined you don't have Peyronies Disease, I would defer to his opinion.  In saying that, I took into consideration your saying you had always noticed the curve and don't have any plaque,

It is fairly common to have an upward curve.  Varied size during a flacid state is also common (remember George from Seinfeld's "shrinkage" in cold water).  Erection may be impacted by stress, anxiety, or depression (worrying about it).

If it will help your peace of mind, go to a urologist.  But, you should not worry.

Liam

[Blink]

Falcone, I agree with my friends. Spend the money, and go to a urologist. Isn't your peace of mind important enough to take the time to make sure?    Keep the Faith...Blink

[falcone]

Thanks guys, yeh ill go see a urologist. Thing is im in the UK so im not sure how seeing a private urologist or what not works, the doc had said that if he referred me it would be a while before I was seen - like maybe a few months.

so you guys are saying with treatment size can be recovered?


one of you described it loss in elasticity, which is kind of the word i would use for it at times, feels like its tightened up and less soft more rigid and retracted when flacid. I hope its just anxiety and im glad to hear that depression etc or worrying about it can effect the erect size to.

So ill make an appoitment with my GP which will prob take around a week untill im seen and ask him if i can be referred sooner or pay and be seen privately, and in the mean time try and relax and see how it goes. im 21 at the moment so you can imagine how this is scaring me senseless and getting me down at this stage in my life, so I appreciate all of your help.

This is a great forum, im really grateful you guys replied.

[falcone]

So guys can lossed size be fully recovered? + if your curve partially mended itslef over time would this result in a loss? i.e would your girth and length have to be sacrificed in order for it to straighten naturally

[jimjam]

I didn't know exactly where to post this...and I'm new to this . Ive always had a very slight banana curve. Now...in the last year...ive noticed it more. and in the last 6 mos...it has begun to bend more than curve to the left. Sex is still possible without much problem.  Here is what is confusing me. I've read where people talk about feeling a bump ( plaque) and having pain. Well, I have NO bump...and absolutely NO pain. Heck, i thought maybe the bend was from all these years wearing tighty-whities. Of course as you might imagine it is a bit only slightly uncomfortable to use if i pull out very far and thrust hard during sex as it tends to want to bend at the area where it starts to curve.  

I went to a Urologist and he confirmed no lump during examination. He said to take a wait and see approach. But I thought they might want to at least induce an erection and x-ray it or something. I just dont get it...i have NO pain and NO lump!!!!   And i have seen a gradual worsening over the last 6 - 8 mos. anyone have the same issue?  My curve/bend is about 30 degress from center.  

[Tim468]

Welcome JimJam

I never had much pain at all, and I only developed something that is barely palpable in the last year (after having a progressive bending problem for 30 years). It sounds to me like you have Peyronies Disease, and it makes sense to do more than "wait and see".

Once again, the lack of a standardized approach to diagnosing and treating Peyronies Disease rears it's ugly head.

Tim

[ComeBacKid]

JimJam,

Your right you should get an ultrasound done to see whats in there.  The wait and see approach in my opinion is the worst thing you can do.  I had no lump, but did have some pain, like an aching pain in my penis for awhile, then it went away and seemed to come back when my disease worsened.  There are some very good doctors in regards to peyronies spread out around the country I'd try to get to one of them.  I'd also get on some kind of treatment, pentox is believed by some to prevent progression of the disease, this is not proven, but I believe in the drug myself.  There are many different treatments out there, you can view some on our treatments section of our webpage.  Feel free to PM me if you have any questions as I've been on an extremely aggressive protocol for the last 5 months.

ComeBackid

[Hawk]

I think it is fairly well established that plaque or scar tissue in Peyronies Disease shrinks as it matures.  This does not usually directly correspond to improvement in bend, curve, dents, etc.  Dr. Mulhall and others have documented this as a normal progression with Peyronies Disease.

[ComeBacKid]

How many others have noticed as time has passed and their scar tissue or plaque has matured, it has also shrinks in size, along with this for me seemed to come a loss of elasticity as well.  There doesn't seem to be any data or observations regarding just how much the scar can shrink, will it shrink forever?  Will it reach a point that it won't shrink anymore? What have other people noticed?  

[misterb]

Did any of you guys have ED develop rather suddenly? A week ago I was still having very firm, full erections. Now I don't get fully erect anymore.



ComeBackid, I haven't noticed any shrinkage of my plaque since I first discovered it last year, but I've read that scar tissue does contract as it ages. I also haven't seen any data as to how much or for how long.  

[ComeBacKid]

Misterb,

In the beginning I didn't really have ED at all and still got a lot of erections.  I also didn't really have any shrinkage either.  It was this past April that suddenly one day my penis was shrunken and hard, and I just totally stopped getting daytime erections all together.  Before this my ED was only in not full erections, but I still got a lot, and sometimes they would be totally full.  

ComeBackid

[Rico]

misterb,

One has to look at stress and other factors that can cause ED....I know for me it is hard to find myself in a sexual mood when I have my unit dunked in pickle juice and in some pumping vacuum machine and reading and thinking about peyronies.....

I know if I start to get a erection and start to think of the condition...well it becomes a flat tire...ones metal outlook can be a contributing factor  in ones performance....

I remember this old cartoon....this older married couple were trying to get it on...she wasn't getting wet and he wasn't getting hard, they both just rolled over and looked at each other and said "You couldn't think of any one else either?".....

Maybe the old adage if you don't use it you lose it "Could" possibility be the case, does peyronies cause ED or does the stress of having peyronies cause one to have lack of use of your unit which in hand causes ED....I guess it is the chicken and egg and doesn't mean a rat's dick anyway...

Rico

[misterb]

Well, things seem to be working better at times now, so I think my erection problems are probably a result of being depressed and constantly worried (scared to death, actually) about having this condition. I'm going to see about getting an appointment with Dr. Levine, hopefully he can help me.  

[Tim468]

Warning to tothers: this is long (winded) and includes a bit of biochemistry but the gist of it is that I am concerned that arginine may be more harmful to me than helpful, since I am in an active phase of disease. If interested in why I think that, read on.

Over the past several months, and again in the last two weeks, I have noticed progression of disease. As a reminder of my history, I developed  a mild constriction/tapering at the end, with a dorsal (upwards) curve over a *long* time (starting over 30 years ago). The curve upwards was associated with a mild erectile dysfunction and a tendency towards premature ejaculation in the last ten years. I attributed that to the increased sensitivity of my Glans being curved upwards and hence getting more friction. I now believe that this was also caused by a combination of flagging testosterone levels and a need to "squeeze" more to stay hard leading to an orgasm sooner.

At any rate, the progression seemed to be glacially slow. I can honestly say that it developed so slowly that I could almost never identify a *change*. This changed starting last year and led to my increasing concern and a renewed interest in finding a better way to care for it. Previously, I simply took vitamin E whenever it felt like it was getting active (and I can tell when that is happening - I feel a slight ache, and tend to pull "uptight"), and also took a lot of advil and had a lot of sex. But that way was no longer helping enough.

I have really wracked my brain to figure out why I might have gotten worse, and also why the worsening is accelerating now, in the last 3-4 weeks. I will not go over all the different issues I have considered, but the highlights include:

1) stopping coffee because the caffeine made me too uptight and I associate that with progression.
2) loss of coffee headaches, and therefore stopping advil (was advil helping to slow it all that time I was using it for headaches?).
3) a genetic predisposition to fibrosis (I have mild DC too).
4) constant inflammatory stress from a bad tooth that needs a root canal.
5) diminished blood flow and erections due to a low testosterone level.

So all of those seemed worth considering, and I have - I scour the literature as you all know and look for things that might help. I consider my disease currently active, and that is an important distinction between me and any other member of this community who might be "stable", IMHO.

I am increasingly convinced that the inflammation of my tooth (now scheduled for a root canal finally, in a few days), combined with a genetic predisposition to this sort of inflammatory response, is responsible for my condition getting worse. I believe that the mechanism is mediated through TGF-beta induced pathways.

So I have been reading up on this and have come to a couple of worrisome conclusions that might concern others here. Here is how a paper I recently read (last night) talked about arginine and arginase the enzyme that breaks it down. (Here is the link to the paper: http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1600-6143.2005.00876.x?cookieSet=1#search=%22Pirfenidone%20%20TGF%22 )

"The induction of arginase, an enzyme that metabolizes L-arginine to urea and L-ornithine, is essential for collagen synthesis (5,6). Indeed, L-ornithine produced by arginase can be further converted to proline, which is a central component of collagen. At least two isoforms of arginase encoded by separate genes have been identified (6). Arginase I is a cytosolic enzyme highly expressed in liver, where it functions as a key part of the urea cycle. Arginase II is a mitochondrial enzyme expressed in extrahepatic tissues such as kidney and lung. L-arginine can also be metabolized by another well-known enzyme, nitric oxide synthase (NOS), to form L-citruline and NO. There are three isoforms of NOS. The constitutive forms, neuronal NOS (nNOS) and endothelial NOS (eNOS), are Ca2+–calmodulin dependent, whereas the inducible form (iNOS) is Ca2+–calmodulin independent and is usually produced in response to pathological stimuli. NO is an anti-fibrotic factor with an inhibitory effect on collagen synthesis (7–9). Since arginase and NOS compete for a common substrate, L-arginine, varying arginase activity may alter the availability of L-arginine for NO synthesis (10,11).[bold added by me] Thus, arginase may be involved in the pathogenesis of transplant-related pulmonary fibrosis through its direct influence on collagen biosynthesis and/or indirect influence on NO generation."

The key thing I came away with, after I got excited about the possibility of modifying my TGF-beta activity, is that arginine (which I am taking in large quantities) may not be a good thing for someone with an active process of inflammation. I may be simply providing substrate for an overly active argenase, that can then lead to more fibrosis, instead of healing through NO mediated pathways.

Simply put, if one has active inflammation (mediated by TGF), then arginine may simply be adding fuel for the fire. It appears that controlling the TGF is key (for me) to breaking out of a cycle of the arginine to proline to collagen pathway (mediated by argenase), and moving towards the arginine to citrulline and NO pathways (mediated by NO synthase). One way leads to increased collagen deposition and one way leads to collagen breakdown.

Here is more on it:

"Despite excessive accumulation of fibro-collagenous tissue being pathopneumonic of pulmonary fibrosis, little is known about the role of a key enzyme involved in the biosynthesis of collagen, arginase. Arginase metabolizes L-arginine to urea and L-ornithine. L-ornithine can be further converted to proline, which is hydroxylated to form hydroxyproline. Given that the primary structural motif of mature collagen is (Gly-X-Pro/Hyp)n, overproduction of L-ornithine via an upregulated arginase activity would feed pathways favoring collagen synthesis, and thus contribute to the development of fibrosis. This notion was supported by a recent report that upregulation of arginase I and II led to excessive collagen deposition and contributed to bleomycin-induced fibrosis of mouse lung (28). In the present study we found that arginase protein and activity were upregulated in lung allografts with an increase in collagen formation. Increased arginase activity could be an index for severe allograft injury, as arginase activity positively correlated with PawP and collagen content in lung tissue. These observations indicate that arginase plays an important role in the pathphysiology of transplant-related pulmonary fibrosis. Indeed, treatment with pirfenidone resulted in downregulation of arginase protein expression and activity, which in turn, limits the supply of proline for the biosynthesis of collagen and thus accounts for, at least in part, the anti-fibrotic effect of pirfenidone seen in lung allografts."

I should have thought about this sooner - that arginine may be hurting me more than it helps, but retrospective views are often better than prospective views. I reread the literature on this a bit last night and found that the role of argenase has been examined in Peyronies Disease and guess what? Its important.

Bivalacqua, working with Hellstrom's group in New Orleans, showed in 2001 the importance of argenase in the devlopment of Peyronies Disease in the rat model. Here is the abstract:

Peyronie's disease is an idiopathic, localized connective tissue disorder of the penis, involving the tunica albuginea of the corpus Cavernosum and adjacent areolar space. Current proposals as to the origin of Peyronie's disease suggest that fibrosis and collagen changes of the tunica are the result of an inflammatory process following vascular trauma. Our laboratory and other investigators have recently proposed an animal model for the study of Peyronie's disease. When transforming growth factor-beta1 (TGF-beta1) was injected into the rat tunica albuginea, tissue fibrosis was observed at 6 weeks. Therefore, our aim was to assess arginase II, endothelial and inducible nitric oxide synthase isoforms, and nitrotyrosine levels--all factors involved in inflammatory reactions--in the cavernosal tissue of saline-injected and TGF-beta1-injected rats after 6 weeks in order to evaluate the roles these enzymes may play in the induction of a Peyronie's-like condition in the rat. To examine the expression of endothelial nitric oxide synthase (eNOS), iNOS, and arginase II protein, and mRNA in the corpus cavernosum, immunoblot analysis, and reverse transcriptase-polymerase chain reaction were performed. We also determined immunohistochemically the expression of nitrotyrosine, a marker of peroxynitrite formation, in the rat penis. After 6 weeks, iNOS protein and gene expression was up-regulated and eNOS protein and gene expression was down-regulated in the corpora cavernosa of the TGF-beta1-injected penises. Furthermore, arginase II protein expression as well as immunohistochemical localization of nitrotyrosine was significantly higher in the TGF-beta1-injected corpora cavernosa. These results suggest that iNOS is the key control element for peroxynitrite formation, arginase II expression, and eNOS down-regulation in the induction of a Peyronie's-like condition in the rat.

So, what should I do right now? I really do not know. I am going to focus on antioxidant therapy, and stop taking arginine for now - in fact I am going to reduce greatly the use of all supplements and concentrate on the VED only. But it is clear that I have to get going with TGF modification if I want to arrest this process.

::sigh::

Tim

[Rico]

Dear Tim,

I would like to say first of all I can feel your pain your in letter and it saddens me, you are a good man and don't deserve this misery....and on this blessed day my prays go out to you...

I would like to give you my two cents:

First of all I don't believe arginine is the factor in your condition becoming more active....

The fact that you have a genetic predisposition to fibrosis and you are in a inflammatory state with your abscess tooth in my opinion is setting off your progression...the inflammation of the tooth can start way before one actual feels the pain....

I also believe that All the arginine and horny goat weed and supplements in the world will not cure your condition...yours is one of a more complex vascular problem...

I would strongly suggest you go to www.herbdoc.com  Dr. Schulzes has a thirty day program...first read the book he has "There are no incurable dieseases"  I have had experience with this program, not myself so much for I never was that sick, I did a modify version of this program and shut down my inflammation, my peyronies has been stable since the second month...but I seen very sick people change there life with this program...I took what I needed from it to shut down my inflammation...

Once your root canal is over you body will settle down a little...

I believe ones get more benefit out of two cups of coffee a day than not drinking it, it has a calming experience and will reduce stress, the key is no more than two...

Exercise is the key go good health....you can't have it without it..period...

Stress is the number one killer....after running a couple of hard 440's you will feel so calm in a hour or so....yoga and pilates, or just going for long hard walks in nature...

Music will sooth the soul, one should listen to his favorite music everyday....

Dr. Shulzes program for the thirty days is extreme...he does have programs for a week ect...but for you, I would do the thirty day program, I know people who where told by doctors they were done...cancer...and this program turn them around....it will flip the switch on your immune system....

I believe that Dr. Lue and Levine see this in the beginning with there clients, that they go after stopping and shutting down the inflammation as soon as possible, this is the pentox/arginine/viagra  no other supplements..... myself from studying Dr. Schulzes and adding some programs for sport injuries such as epsom salt baths did the same thing...diet was only for anti inflammation...

I really believe if money is the object with most people they would be better off spending the money on good food and taking yoga or pilates courses or getting a personal trainer, going into the martial arts or to a health spa....the American way is to take medicine...there is something we like about that brown bottle with the child proof cap and medical label on it...it has to work, it is medicine....it is a bandage for the real problem sometimes....

I just finished two weeks with the "A" cylinder, this morning I woke up..UP:) and it was ever so slightly less bent...I was very happy to feel or see this very slight improvement....I'm starting my "B" cylinder tonight....I have been running now for three weeks everyday and my diet and exercise program is better than ever....I can tell my stress level has taper off or getting better...and I have lots of stress in my life, but after running hard and working out...I feel so much better, a very calm feeling, not pill induced...and you know my circulation in my loins is there when you are running...

I will say I do believe one can over take arginine also, these supplements are that, a supplement....I look at the diet plan of some of the best train martial artist in the world, the Brazilian jiu-jitsu..the Gracies...lots of arginine in diet..nuts, lean meats ect...all natural....

I believe you can turn your life around Tim..your smart and have drive....like I said before, I think you are a giver and you have to start taking Tim time....be sellfish for a few months to turn it around, flip the switch...lifestyle change...join a jiu-jitsu club or boxing club.... you need someone to push you...keep your mind off of this illness...

I will say a prayer for you today....you can do it, I know you will be better..your body is a remarkable thing and if you give it a chance it will respond....

Rico

[Cindy]

Hello,

I am very happy to report my boyfriend is seeing a urologist who specializes in ED and Peyronies in Dec. We are looking forward to hearing what he thinks.

Just a few questions, from your experiences:

- should we ask about verapamil injections?
- is shrinkage permanent?
- how long does the pain last and is it associated with progression ?
- do errections which encourage blood flow help stop the progression of peyronies?

Any thoughts would be greatly appreciated!!

Thanks,
Cindy  

[Liam]

Cindy,

There is no way to answer these questions with 100% certainty. I will address each point.


should we ask about verapamil injections? - I have decided against it because it is painful and the results I have heard have not convinced me
- is shrinkage permanent? I have regained some, but not all, size.  My situation is complicated by prostate surgery.
- how long does the pain last and is it associated with progression ? Different times for different folks.  Mine has subsided and reemerged several times.  It will go away at some point.
- do erections which encourage blood flow help stop the progression of peyronies?  I'm not sure its the blood flow or even the erections.  There are some indications that l-Arginine, pentoxifylline, and Viagra help Peyronies Disease (and erections).  VEDs seem to have benefit, also.

I hope I have not been too vague.  We, the men here, are test subjects.  There is nothing out there that is proven 100% successful.  But, we keep trying to beat the odds.

Good Luck,

Liam

[Hawk]

Cindy,


My personal opinion:

Your boy friend might want to consider this information before deciding on Verapamil injections: http://www.peyroniessociety.org/survey_ilv2.htm

Pain always subsides,  the length of time is difficult to guess.  Pain is a very good indication that the Peyronies Disease is in the active phase.

Shrinkage very seldom reverses on its own.  Some have reported reversal with VED use.

I have nothing to add to Liam on the topic of erections except that if erections are painful, then I believe sex could tend to further inflame the Peyronies Disease and contribute to progression.  The old saying, "if it hurts, don't do it"

Good luck

[Hawk]

We were getting a good conversation going about the role of TGF factor, arginase, and the interaction of L-arginine.  Many of the posts tied in to the original post, but focused on arginine so I moved 10 posts (including the original post that started the discussion) from this topic to the "Oral  Treatments" topic.  Most of them are still consecutive to each other and easy to follow.

[Tim468]

I have been tinkering on a slightly quiet Saturday without enough to keep me busy.

I have found that if one takes a picture of an erection one can keep a good record of progress or progression. I had some thoughts if not exactly recommendations for how to do that as best as possible, and to make the picture less pornographic.

A quiet background is important - I recommend a blue background, but other colors can work. Use a color that will allow for a contrast with the shape and margins of the skin. It is best to take a shot from exactly to the side, and directly above to show a side view and top view (your view). If there is a lesion on the underside, take that shot too. One can wear blue undershorts and crop a picture to reduce the distractions (like a pot belly).

Erection quality is an issue. Doctors will try to document in such a way, but will induce an erection with an injection. One could take Viagra to be sure that the erection is as hard as possible (if it works for you). Using a ring to trap blood may alter the direction of the penis, so be careful of that.

After saving your digital image, you can alter it a bit in Photoshop. I am not sure how to do it in other programs. I found a Dupuytren's Contracture image on the web to use as an example (DC1). I discarded the color data (Image: Mode: Greyscale), and left it in grey scale (DC2). Then, in PS 5.0, I used a filter to change the appearance a bit by using a filter (Filter: Brush Strokes: Ink Outlines) (DC3). This makes it a little less embarrassing to give to a doctor, IMHO.

If you are interested in calculating angulation, there are several ways to do it (provided you are maximally hard). One is to draw a line down the center of the penis, extending straigt forward, and another down the center of the end. The intersection of the two lines forms and angle and that represents the deviation (DC4). You can also draw lines that are at right angles to the surface of the two parts, and measure the angulation where they intersect (DC5).

This might allow one to gather data to give to a doctor and to measure progress. Using a digital camera and the photohandling software that often comes with it can allow one to make a digital image that might avoid the embarrassment of having, say, a kid finding it. Also, one can do mor blurring to allow for les "relity". The examples are included below, and in the next posts.

Tim

[Tim468]

Other images altered

[Tim468]

Altered with brush mode filter

[Tim468]

Angles measured

[Mister Dillon]

Tim

Wow--That must have been a slow Saturday.  Looks like a lot of work to me but the pictures were interesting and that looks like an effective way to figure the angles and hopefully the progress.

I too was trying to figure a way to chart the angle of an erection so that I can see my progress now that I am starting the VED Portocol.  I tried a couple of things out but they were not effective since the procedure can't take too long or be too complicated or the item to be measured shrinks away.(at least my item does)

I found an easy and cheap solution--I purchased a cheap plastic Protractor from my local Lowe's store for less than $5.00.  It is quick and easy and can also measure inside angles.

Now I want it understood that I do not work for the protractor manufacturer or Lowe's (I am sure you can get there anywhere) and the opinion expressed here is my own.  (please, that was a joke)

I am getting so comfortable here with posting and joking that I think I will sign off with my first name (screenname) from now on

See ya

Mister

[Hawk]

Mister,

That's all we need is some protractor shill pushing protractors without one single clinical study to suggest they even work.  

I have mentioned this before but will slip in here with Tim's system.  For anyone that has a VED, it is in my opinion, a very good way to record size increase/decrease.  While a natural erection can vary, a VED erection can be taken to the same full point each time.  It removes most the variables of ruler placement, how hard you press the ruler.  Most don't find this erotic enough to maintain a maximum erection.  It is easy to mark directly on the tube with a marker, or mark on a narrow piece of masking tape running lengthwise.  There is no guessing if you are gaining or loosing and even very small changes can be seen.  A camera is an option, but not needed.

Depending on your VED, you only have to be sure enough skin at the base is inside of the tube to allow full expansion and not give a backward pull.  Most men with a VED are well aware of this simple issue.

PS: Tim, we are really glad you chose a non-pornographic digit for illustration.

[Steve]

Tim,

Well, I guess I've been doing things right all along...I've got over a years worth of weekly pictures from the side, and I've always used the same darkish blue towel as the background.  I have my wife sit in a chair, so the picture is taken from more or less directly from the side.  I have taken ony 1 photo from the top, as all my deviation is vertical, but I think I'll take a few more occasionally incase some other deviations start to form.

As far as angulation measurement, I drew a line with a pen from the base to the tip while soft, and then, after getting erect, took another.  I then used these lines to measure the angle.  Personally, I think your way seems easier, and I'll go back to a few photos and re-measure and see how the two compare.

Steve

[Tim468]

One comment on the VED. I have had days where I didn't, um, measure up to previous standards. It induces a great amount of anxiety in anyone who is worried as it is. However, I have learned that a good hot bath beforehand (I am not worried about infertility - but younger men thinking of having a family should be), and I have found that this loosens me up enough that I can reclaim my lost millimeters, and I will be comparing apples to apples instead of apples to oranges.

Tim

[Steve]

Tim,

I've noticed the same thing in the past few weeks.   When pumping, I get fewer pumps before I start to feel some discomfort, and this results in a smaller erection (especially noticeable when in the largest cylinder).  I think I'll try the hot bath trick to see if that helps (I'm not planning on any more kids either).

Steve

[Rico]

I have only been working with the VED now for my third week....still no change, but then it is only my third week....

The one thing I learn from Angus is that if you take a few pumps and release and keep doing this to warm up like you would warm up in exercising then you can go for a larger erection, this seems to help me.....instead of counting how many times I'm doing it, I go for ten minutes, five more of warm up and then several for the full pump and then a couple of warm down pumps....I do agree with taking a warm bath first though, or wrapping your unit in a hot cloth first.... I try to do some yoga or pilates first, just get thing moving a little....

Having the warm blood though and giving it a couple of warm ups seems to help....I just saw that ky has come out with a personal warming gel.....I think this could be good, it is a little more expensive, but the heat would be good I think, if I was going to build a VED for peyronies I would think about having it in a tube that was heated, maybe with steam and lube..... I'm not joking about this....the newest craze is hot yoga...it is so much easier to stretch when you are warm.....this gel by KY suppose to warm to the touch of ones skin....I would like to sneak my ved  in the sauna at the gym, I'm sure I would get some funny looks:)....

Rico

[ComeBacKid]

Rico,

Yes Angus is right do about 5 minutes of warm ups, just pump a few times and release to get the blood flowing and get your member bigger, when you first start out it will be small especially in the B cylinder and not get as big right away.  

Your expecting results to soon my friend, I'd wait until week 13 then do an evaluation, the process is extremely slow if it works.

Rico don't get caught like that judge who was pumping while residing over cases...  

[Rico]

ComeBackid,

I know it is a 26 week protocol...not 26 days:)....

I really didn't expect anything for a couple of months, and then a small improvement, mine is a hour glass on the dorsal, and I do believe this is a diffcult situation to cure....the plaque is embedded in the septum like a fat Tick! I will give it a few months the VED is no big deal to me to use.....I will be glad to hit the C cylinder to see what that does, but that is still almost a month away.....

Rico

[mark501]

There is a new abstract available on PubMed. It is #17081219. The title is: Defining The Clinical Characteristics of Peyronie's Disease In Young Men. It is from the Journal of Sex Med of Nov 06.   www.ncbi.nlm.nih.gov/entrez/

[Liam]

1: J Sex Med. 2006 Nov 1; [Epub ahead of print] Links
Defining the Clinical Characteristics of Peyronie's Disease in Young Men.Deveci S, Hopps CV, O'brien K, Parker M, Guhring P, Mulhall JP.
Department of Urology, Weill Medical College of Cornell University, New York Presbyterian Hospital, New York, NY, USA.

Introduction. Peyronie's disease (Peyronies Disease) is usually seen in men in their fifth decade of life. Aim. In this study, we investigated the characteristics of the disease in young men. Main Outcome Measures. The demographics, clinical features, and associated comorbidities of the patients with Peyronies Disease were retrospectively reviewed. Methods. The findings were compared between men with the disease who were under 40 years of age with those over 40 years. Statistical analyses were conducted to define differentiating features between these two groups. Results. Of the 296 patients, 32 were under the age of 40 years and 264 over 40 years. The mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups. Fifty-six percent of the patients under the age of 40 years and 75% of the patients over this age presented with curvature (P < 0.01). Thirty-seven percent under 40 years and 12% men over 40 years had more than one plaque at presentation (P < 0.01). Dupuytren's contracture was seen only in patients over 40 years of age. Pain at presentation was found in 75% under the age of 40 years and in 65% over 40 years (P = 0.03). Trauma history was found in 18% under 40 years and in 5% over this age (P < 0.01). Statistical significant differences were found between the groups under and over the age of 40 years for hypertension (P < 0.01) and dyslipidemia (P < 0.01). Diabetes was noted in 50% of the patients under the age of 40 years and in 18% of the patients over this age (P < 0.001). Multivariate analysis of conditions associated in men with Peyronies Disease under 40 years of age showed statistical significant differences for diabetes (P = 0.015), presentation within 6 months (P = 0.004), and having multiple plaques (P = 0.008). Conclusions. Young men with Peyronies Disease are more likely to present at an earlier stage of the disease, to have diabetes, and to have more than one plaque at the time of presentation.

PMID: 17081219 [PubMed - as supplied by publisher]

[/size]
source:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17081219&query_hl=1&itool=pubmed_docsum

[scott]

An interesting study abstract.  Evidently, the full study isn't available yet.

Can anyone conjecture what is meant by "...the mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups...."  Are they referring to the active phase of Peyronie's only?  To me, "duration" indicates a beginning and an end, which for most of us is not the case.

Does anyone have any ideas?

[myrddin]

Can anyone conjecture what is meant by "...the mean duration of the disease was 2 +/- 4 and 6 +/- 8 months in the respective age groups...."

Apparently some of the subjects had Peyronie's Disease that lasted for Negative Two (-2) months. A duration of negative time seems significant.  I'm sure Einstein would have been interested in those aspects of the study.  Perhaps we should contact Stephen Hawking; he might be able to make sense of it.

Someone please forgive my cynicism.

[Angus]

   Myr, your cynicism is appreciated and forgiven lol  

   I guess the study report composer got caught up in study-ese. I think a mean duration of 2 to 4 and 6 to 8 months was intended, but study-ese demands large, multi-syllabic words and characters like plus and minus. With a max of 8 months mean duration they've got to be referring to the active stage.
  Tim has helped us a lot with Study-ese translation. Maybe he can help out a little with this one.  

[Rico]

Does anyone understand how plaque moves, mine went from mid dorsal to the right about a half inch, how is this possible?

Rico

[Hawk]

Rico,

Have you ever looked at these photos? They are the pictures of the man's chest.  They are on the attachment in the 2nd post. https://www.peyroniesforum.net/index.php/topic,155.0.html

If you study these you will see a keloid or hypertropic scar that has a leading edge that is rolling across his chest like a wave.  The leading edge is raised with flat scar tissue left in its wake.  After putting some though into it, this is one of the most captivating photos I have seen.  Especially when you realize that it started from only infected hair follicle on the chest.  I am convinced that this typical advance of hypertropic scaring is what happens to our tunica to one degree or another.  The scar starts, leaves the damaged area, gets no signal to quit, and rolls across completely healthy tissue, appearing to move.  In fact the place where you felt the plaque before was the raised the leading edge of scar tissue.  It reduced in size but that area is still scar tissue, just not raised scar tissue.  It is now the flat scar tissue left in the wake of the leading edge.  As the leading edge advanced, it feels like the scar tissue moved from one place to another.  

I know this is not good news and I do not intend to discuss a disturbing phenomenon callously.  It is just that I have discussed this many times.  In fact I have covered it before with you but you did not have something personal going on for it to grab your attention then like you do now.  I think this single simple concept does more to visually help one understand the progression of Peyronies Disease than any other, IF they will read it, look at the picture, and ponder it.  It explains that an injury to one spot on the penis does not mean scar tissue will not form on the opposite end of your penis where there is no damage.  It explains why plaque seems to move.  It explains that the older scar tissue naturally reduces in size.  This is why many people mistakenly think they are having an impact with a treatment because they equate reduction in plaque size as reversal when it is normal  maturing of the scar and it does not improve the bend or other deformity.

Good luck my friend.  You are on the right path, just keep doing what your are doing and do not panic.  I think you will see improvement.