Progression of Peyronie's Disease

[George999]

Well here goes....

I am totally new to this and my doctor has diagnosed me and prescribed potaba, topical verapamil ( from wedgewood in NNJ) vit. e and cialis daily...    I have hourglass and just started to bend up ...really stressed over all this as only you guys know.

I guess I need to sum up as follows..after going to a urollogist..what is the first thing a new guy should do to prevent progression...

Worried,  I am convinced that Potaba DOES help.  HOWEVER, I refused to take Potaba when my doc prescribed it because it requires that you take a huge number of pills four times a day WITH food each time.  I found that very impractical, not to mention a sure prescription for weight gain which I can live without.  Instead, I went for Pentox.  I believe it to be more effective, safer, and easier to manage than Potaba.  It is also far less expensive.  But it IS off label, which means that, although it is a proven generic drug that is used for fibrotic conditions, it is NOT approved for treatment of Peyronie's.  But I would get a copy of Dr. Lue's paper on Pentoxifylline and show it to your urologist and see if he might be willing to prescribe it for you.  If not, I would try to find a urologist in your area that WILL prescribe Pentox and then try to get a referral from your urologist.  The alternative would be to try to get an appointment with Dr. Lue himself.  Flights roundtrip from NYC to SF should be quite reasonable in price and it would probably be worth the money for you.  Dr. Lue is a Peyronie's expert but he does require screening by a local urologist AND a diagnoses and referral up front.  So, in any case, keep a good relationship going with your current urologist as best you can.

Second, ALC is helpful and can be used in conjunction with Pentoxifyline without any problem.  This needs to be Acetyl L Carnitine and not just Carnitine.  They are not the same and only Acetyl L Carnitine was found effective in at least one trial.

Third, I recommend Vitamin D.  If you drop down and read some of my posts here, you will see why.  Deficiency in Vitamin D causes all kinds of problems in the body.  The best form to supplement with is D3.  Sunlight also works of course, but not so well in the winter at your latitude.  You should try to seek your physician's cooperation with the D3 as it can raise blood calcium dangerously in rare cases.  I am taking 10,000 IU now and am going to bump that up slightly to 12,000 IU.  I have found it helpful.  There is actually a Peyronie's trial going on now in Brazil with Vitamin D3.  I bumped onto it some days ago and stupidly did not save the link and now I can't find it.

Fourth, Vitamin E and Ciallis are fine with all of the above and some have found Arginine helpful as well.  Be sure to get a good quality natural Vitamin E, the full spectrum kind is best, and the best form of Arginine I have found is SAN VasoFlow.  - George

PS - A (very) small number of people have reported benefit from Topical Verapamil, most feel it is useless, a few are convinced it is a downright fraud.  Oh well ...

[alcohen]

Anyone !!??  I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!

I am sorry that this is happening to you.  As I am sure others here will attest to, I would NOT try to force your penis in the opposite direction from the curve.  This can lead to additional scarring.  Unfortunately, it appears there is some progression in your Peyronies, one that is similar to what I experienced.  And with mine, when this happens, the chord-like whatever that is running from the base to the top of my penis protrudes more...  

What are you taking?  Get to a uro.  Have you had an ultrasound done?

[worried]

Geroge,

WOW...I am breathless and can't thank you enough for breaking it down for me...  THIS IS EXACTLY what I neede and you provided it... a genreal summary and direction, plan and where to go, to whom and the experts etc..


I have spent hours trying to glean this enough myself and it gets overwhelming and depressing.

It is so ez to descend into these matters and loose yourself...the more info the better and the sharing the the better but I needed teh jump start you gave me thanks,

BTW: topical verapamil...  my doctor told me he doubts it works but perscribed it as there were some dubious studies that said it might be of help and he noted that he had a patient just call him this week saying that he should cancel his surgery becasue he thinks teh verapamil is working a little bit, but even the doctor told me that the patient is really just scared of teh surgery and that the verapamil really is not working  or making any noticable clinical difference but alot of this is in guy's heads, wanting stuff to work and seeing "improvement"  which he said in a way...keeping hopes up is a big part of manageing a incurable difficult disfiguing disabling disease.

[George999]

Worried,  I would also caution you that the steps I am suggesting will not likely "cure" your Peyronie's, but they will almost certainly arrest its development so that it doesn't get any worse.  I think it is very important to do that at this point since there are new treatments coming.  One of those of course is Xiaflex (collagenase), but the likelihood of your getting into a trial at this point is probably slim.  At the point you are at now, you really need to get ahead of this quickly and stop its progress.  Of course, doing so early like this actually opens the possibility of even getting rid of it completely as well and I do hope that that is how it works out.  But the reality is that doesn't happen very often, even with treatment.  I wish you the best!  - George

[worried]

Geroge,

FIrst off a chance to contribute..

here is the link you were looking for..

http://www.controlled-trials.com/ISRCTN82950322/

study is scheduled to end in 20010 and is likely to be extended.

"To evaluate the effectiveness and safety of the combination of hyperthermia, vitamin D and testosterone in the treatment of Peyronie's disease compared with hyperthermia alone. "

more info:

"Patients will be randomised to:
1. Control group: 30 patients will be treated with hyperthermia alone (30 minutes/day with infrared lamp of 150 W at a distance of approximately 20 cm of the plaque(s) and curvature)
2. Experimental group: 30 patients will be treated with hyperthermia (as above) plus Vitamin D (4000 IU/day/oral) and one injection of Testosterone depot (Durateston®) every 2 weeks initially (patients with baseline levels of free testosterone under median normal level)

All patients will have to return every month and levels of testosterone and vitamin D will be analysed to reach the goal of median normal level of free testosterone and maximum normal level of vitamin D. Every 3 months, levels of PSA and Haemogram will be analysed and at 6 months and 1 year digital rectal examination and also ultrasonography and photos of penis on erection will be analysed. "

NOTE THE D DOSAGE 4000IU/day.

it is interesting.... for the first few months I noticed something... it was no big deal and nothing much changed from that but all of a sudden very recently I did notice something just slighty start to bend liek there was a change all of a sudden about to go on maybe...I know realize that this is what is the problemand should be slowed or prevented

so it will be d3, e, and protaba and hyperthermia for me this weekend until I can get to a better urologist and get pentox...   I just can't seem to get my head around the whole traction / vacum thing yet...  I just don't have the privacy or the emotional and mental courage to go there ...yet (ugh!)

thei si so simple on one level and connected to many other common populous and disfiguring and disabling diseses that I can't imagine that something will not be done for these fibroblasts soon.  But soon may be a very very long time.

[wayne999]

Anyone !!??  I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!

I am sorry that this is happening to you.  As I am sure others here will attest to, I would NOT try to force your penis in the opposite direction from the curve.  This can lead to additional scarring.  Unfortunately, it appears there is some progression in your Peyronies, one that is similar to what I experienced.  And with mine, when this happens, the chord-like whatever that is running from the base to the top of my penis protrudes more...  

What are you taking?  Get to a uro.  Have you had an ultrasound done?

Thanks for your reply, I was surprised you were the only one to have done so!

My chord-thing doesn't run up the shaft to the head, it's more of across the shaft and extends for maybe an inch. There seem to be 2 on either side. I'm just taking vit E, gingko and fish oil. I will see a uro very shortly and an ultrasound I had done several months ago (before this rightward deviation stuff, which is only a few days old) didn't show up any calcification or "evidence" of Peyronies Disease.

I also had a look at a few photos I took a month ago, and it seems like there may have been a very minor rightward deviation even then......but it just hit me the other night that it wasnt pointed out straight but had that slight tilt - so I'm not sure if im going crazy about all of this but it seems coincidental that the tight underwear episode and my noticing the right deviation occured on the same day.

[newguy]

Worried,  I would also caution you that the steps I am suggesting will not likely "cure" your Peyronie's, but they will almost certainly arrest its development so that it doesn't get any worse.

Does this mean that you are of the belief that those starting on this regime in the very early stages of peyronies (just pain, or lump - no bend) will be unlikely to develop worstening symptons. Is that not something of a lofty claim? Don't get me wrong, the statement may well have merit, but are you confident of this?  

[alcohen]

Anyone !!??  I also want to add that slight rightward deviation is not a gentle curve or anything, the whole unit from the base points in that direction (maybe around 5 degrees, less than 10). Should i try to use that tighter underwear and try and hold me penis in the opposite direction (in the flaccid state) ? i.e. make it point left a little? Or should i just leave it alone???!!!

I will see a uro very shortly and an ultrasound I had done several months ago (before this rightward deviation stuff, which is only a few days old) didn't show up any calcification or "evidence" of Peyronies Disease.

Important question, was your ultrasound done while you were flacid or erect (via injection)?  I am still waiting to have mine but it is my understanding that many times Peyronies plaque and/or scarring can be only visible when erect during an ultrasound because that is when the erectile bodies are stretched and the tears and scarring can be seen.  Your ultrasound was a "no problem found" diagnosis??  Obviously there is something going on.

[Thanatos]

Welcome Thanatos,

I am not sure I understand your comment.  You say in parenthesis that you always had the hourglass.  Do you mean prior to surgery and now it is back?

Did your history of Peyronies Disease begin with an injury?

Hawk

Hawk – Sorry for the unclear parenthetical.  Yeah, when I said I always had the hourglass shape, I meant "always" prior to surgery, and that now it's back (after almost a year of no problems).

I am not sure my condition began with a specific injury or not.  I grew up in a fundamentalist household, and I never dared look at my erection until after I went to college.  Before then I would masturbate in the dark, through my clothes, rubbing downwards.  I did have an incident in high school where a guy assaulted me, and kicked my crotch really hard several times, which led to bruising I didn't tell my parents about.  The urologists I saw (I saw several) thought that either masturbating through my clothes or the assault could have led to condition.

My problem now is that there aren't any specific explanations for the hourglass shape.  I haven't had any trauma since my surgery.


~~~

Any change in condition is worth keeping an eye on. It's worth mentioning that the symptoms of many people here come or are constantly in flux, so it may not be the case that what you are currently experiencing will get worse and worse over time. These developments could potentially be peyronies symtoms (unless you are stating that you literally 'always' had an hourglass shape), but it may be too early to tell because as you state your erect state hasn't changed as yet. It may be a case of 'wait and see'.

In the meanwhile you could explore making changes to your diet, exercise regime and taking certain supplements. The supplments are detailed on this site and at this worrying time for you they will help to insure that you're doing everything in your power right now to combat this potential development.

newguy – Thank you for your advice, it is reassuring to know that Peyronies Disease doesn't just escalate, which was my fear.  I'm actually really fanatical about diet and exercise, I do weights, HIIT, and have a low-glycemic diet.  I already take bromelain (I figured I need it anyway since I drink protein shakes after my workouts), but I have avoided gotu kola and ginkgo biloba because they aggravate my erythamous rosacea.  I'll definitely peruse that forum a bit more for some other ideas, I'm always open to more supplements.


~~~

I am totally new to this and my doctor has diagnosed me and prescribed potaba, topical verapamil ( from wedgewood in NNJ) vit. e and cialis daily...

worried – Before I had surgery, one of the treatments I tried was topical verapamil, and it did absolutely nothing for me.  It was a year wasted out of my life and I resent having wasted my time and money that way.

[newguy]

newguy – Thank you for your advice, it is reassuring to know that Peyronies Disease doesn't just escalate, which was my fear.  I'm actually really fanatical about diet and exercise, I do weights, HIIT, and have a low-glycemic diet.  I already take bromelain (I figured I need it anyway since I drink protein shakes after my workouts), but I have avoided gotu kola and ginkgo biloba because they aggravate my erythamous rosacea.  I'll definitely peruse that forum a bit more for some other ideas, I'm always open to more supplements.

This kind of relates back to my previous message to George. I'm sure that using the tools this forum has pointed us towards does help somewhat and in many cases significantly, but it's hard to know how any particular case will react to treatment. In terms of reducing curve, the VED has proved itself beyond doubt. Of course, it won't work for all people, but for some of the familiar faces here it has been a relevation. Traction also has good potential. George is a walking, talking vitamin with arms and legs, and there's another angle that this can be tackled from .

It's all about managing the condition until better treatments come along. There are trials taking place as we speak which will hopefully result in more effective treatments. It's a painful waiting game, but it's without doubt better to be pro active than not.

[wayne999]

Important question, was your ultrasound done while you were flacid or erect (via injection)?  I am still waiting to have mine but it is my understanding that many times Peyronies plaque and/or scarring can be only visible when erect during an ultrasound because that is when the erectile bodies are stretched and the tears and scarring can be seen.  Your ultrasound was a "no problem found" diagnosis??  Obviously there is something going on.

It was done in the flacid state. Can scar tissue be detected only in the erect state??

Yes, it was a "no problem found" diagnosis and it was suggested by uro's to be congenital etc.

[wayne999]

I am not sure my condition began with a specific injury or not.  I grew up in a fundamentalist household, and I never dared look at my erection until after I went to college.  Before then I would masturbate in the dark, through my clothes, rubbing downwards.  I did have an incident in high school where a guy assaulted me, and kicked my crotch really hard several times, which led to bruising I didn't tell my parents about.  The urologists I saw (I saw several) thought that either masturbating through my clothes or the assault could have led to condition.

Thanatos: Your description of masturbating through your clothes, rubbibg downwards seems consistent with what i posted in the Causes of Peyronies Disease thread, namely this idea of "traumatic masturbatory syndrome". I too believe that in my early childhood, masturbating against the mattress, pillow or floor caused my current downward curvature.

I was wondering, how much length would you estimate you lost after your Nesbit plication? Did uro's also tell you it was more riskier because you had a downward curvature i.e. plication would need to take place near the nerve bundles on the top side of the penis?

[Thanatos]

This kind of relates back to my previous message to George. I'm sure that using the tools this forum has pointed us towards does help somewhat and in many cases significantly, but it's hard to know how any particular case will react to treatment. In terms of reducing curve, the VED has proved itself beyond doubt. Of course, it won't work for all people, but for some of the familiar faces here it has been a relevation. Traction also has good potential. George is a walking, talking vitamin with arms and legs, and there's another angle that this can be tackled from .

It's all about managing the condition until better treatments come along. There are trials taking place as we speak which will hopefully result in more effective treatments. It's a painful waiting game, but it's without doubt better to be pro active than not.

newguy – Yeah, medicine is unbelievably primitive.  I also have rosacea, another game of interminable waiting while they grasp at straws to find something.  There I also try supplements to moderate the symptoms, but nothing really works.  

I have read George's posts and I'm considering adding a separate Vitamin D supplement to my regime.

~~~

I was wondering, how much length would you estimate you lost after your Nesbit plication? Did uro's also tell you it was more riskier because you had a downward curvature i.e. plication would need to take place near the nerve bundles on the top side of the penis?

wayne999 – No, my urologist didn't mention any extra risk from it pointing downwards, and I didn't have any complications.  I lost about 1-1/2 inches (I had a very severe downward bend, though, which is something to take into account if you're considering a Nesbit plication), but I had 8 to begin with, so it was worth it.

[George999]

newguy,  All I can say is that everytime I have suffered a major setback it has been at a time when I was either off of the key supplements OR when I was off of my strict diet.  So I do believe that those key supplements I mentioned and Pentoxifylline can halt the advance of Peyronie's.  Actually Dr. Lue's staff, from the feedback they have gotten, believes that Pentoxifylline will usually stop the advance of Peyronie's.  This is NOT to put down the VED.  I would be the first to acknowledge that the VED can also stop the advance of Peyronie's.  It is just that for some of us the VED route works better and for others the drug/supplement route works better.  And there are others of us that are doing mix and match with both of those.  But I absolutely maintain that there ARE ways to stop Peyronie's from becoming worse, but curing it is more elusive.  I think we are getting VERY close, but we are not there yet.  - George

[Tim468]

Overall, George, most of us either get better very little, or only with the VED.

Your improvement is due (I think) to your close attention to diet and exercise, weight loss with that, and possibly due to a difference in the nature of your Peyronie's (ie the way it comes and goes so fast and seems to be characterized by induration and not dense fibrosis).

Tim

[mikesb]

Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.

The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".

Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.

These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.

I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.

Thank you all here for what you do, a great service to man.

Regards

Mike

[Iceman]

i thought I was getting better ,ie the plaque was getting softer and reducing in size and the pain was going - suddenly a new bump has reared its ugly head on the left hand side - a brand new bump  with all the associated new pain and crap that goes with it - its amazing how you cannot predict this and that a new bump appeared and I keep doing all the right things as far as supps and ved goes - why is this happening.....the pain this time is becoming unbearable.....

[Old Man]

Iceman:

Sorry to hear that you have now have seen a regression of your Peyronies Disease. Unfortunately, this can and will occur. There seems to be no way this mess can stay stable in some guys. VED therapy does not necessarily cause more symptoms, they just happen. I know first hand, as this occurred to me several times during the past 55 years. One therapy helped for a while, Peyronies Disease returns, try another therapy, Peyronies Disease returns and so on.

You should at this point slow down with the amount of vacuum pressure you are/were using for your VED therapy. It might be wise to just not do it at all for a while to see if the pain and other things abate somewhat. Experiment with varying amounts of pressure to find the right combination that does not cause pain when using it.

If the pain continues to be overwhelming, I would suggest that you cease the VED therapy until you get over the heavy inflammation of this bout with Peyronies Disease. Take any oral meds that will help with holding down the pain, etc.

Keep us up to date on how things progress for you so that we can benefit from your experience. Let us know if there is anything we can do to help.

Old Man

[George999]

Iceman,  Old Man is right.  This stuff is just so unpredictable.  That is why I just laugh when I hear people talk very authoritatively about first the active stage and then the stable stage and so on.  All you can do is try to keep track of what tends to set it off and what tends to calm it down.  I don't think you are doing anything particularly wrong, you just aren't there yet.  And to make matters more frustrating, what works for someone else might not work for you.  And sometimes you find something that seems to work really well for an extended while and then everything just seems to turn to ashes overnight.  At this point I have suspected the ALC of messing up my problem with my legs, so I quit it a few days ago.  My legs, indeed, have gotten better and I am hoping the Peyronies doesn't take off again.  But so far the Pentox, Vitamin D, and light treatment seem to be keeping it very much in check.  But who knows about tomorrow?   Each day is a new challenge.  But new treatments are on the way, just hang in there and keep working at it.  I wish you the best through all of this.  - George

[YMENOW]

Newby here. Being a typical man I ignored the first signs of the disease (dorsal plaque and upward curvature) until my wife started complaining about the "feeling". Even then I did not see a urologist for possibly 6-8 months and then only because sexual activity was becoming uncomfortable. That was 2-1/2 years ago. I am 54 now.

The urologist prescribed vitamin E, lubrication and Cialis (not daily, but as when required) to help deal with the obvious ED problem that typically accompanies this disease. A follow-up after 4 months showed no significant change and thus a conclusion that the disease had likely stabilized and would possibly improve etc etc. While the upward curve was quite pronounced, sexual relations were possible and relatively pain free so no change was made to the "prescription".

Several months later I noticed a very slight indent at the top of the shaft on one side (the right) that was affecting glans growth. In the past year two more small plaques causing indents have shown up, one on the left side halfway up the shaft and the other on the right maybe an inch further up toward the head. The indent on the left is more pronounced.

These additional plaques have had the side effect of somehow reducing the previous upward curvature but only because the penis does not properly engorge beyond those two newer side plaques. In fact, the second small plaque up by the glans does not seem to have much effect anymore because not enough blood is getting to that top half of the shaft. I am left with somewhat of a pool-cue scenario and of course my wife is very impacted by the loss of length and girth at the business end of the penis.

I have another appointment with the urologist in late November (we are not alone, every urologist in Toronto is booked solid!!). Has anyone here experienced a similar case history to mine? Have there been any treatments that improved the situation? Any advice as to pertinent questions I should ask at my appointment. I have dilly dallied with this issue long enough although I am still somewhat concerned that the disease has not stabilized.

Thank you all here for what you do, a great service to man.

Regards

Mike

[George999]

Port,  I just don't believe the classic view.  This disease can go from active to chronic and then repeat the whole cycle again.  I do believe that typically one can have "plaques" that are solely the product of inflammation.  This then is what some people would refer to as the active stage.  One can also have fibrosis with no "plaques", however, I do not believe that this precludes inflammation.  Inflammation can persist at a very low level.  Neither do I believe that calcification precludes inflammation.  And I believe this inflammation is a product of an auto-immune process.  I also believe that if you can actually get this inflammation down to zero and keep it there, your body can heal no matter what stage you are in.  But the presence of fibrosis makes it more difficult to root out all of the inflammation and the presence of calcium deposits in the tissue makes it doubly difficult to eliminate the inflammation.  But I do believe it is possible and I believe that Lue's study reinforces that concept.  Unfortunately, I am not sure it is possible in a practical sense for most of us to achieve that, but, I for one, am going to keep trying.  - George

[Iceman]

GEORGE999 - Ive got a prescription from the doc called MOBIC its a powerful anti-inflammatory so I will take these for a month or so to see if it works...i didnt want to go down this path but given the intensity of the pain I really am left with no option.
Pentox seems to be doing nothing and this is very very very disappointing!!!!

[Old Man]

Iceman:

I have taken Mobic for quite a while for my arthritis while it was under the brand name. It went generic under the name of Meloxicam, but it did not help either.

Have taken quite a number of the NSAIDs, but to no avail for either my arthritis or Peyronies Disease.

Old Man

[mikesb]

YMENOW

Did you mean to add any comment after quoting my newby post or are you indicating you have/had similar symptoms and history?

Still looking for good advice re questions for the urologist. I intend to bring photos to demonstrate the current state of the disease. Any other advice gentlemen?

Regards

Mike

[George999]

A lot of doctors like to rush their patients into surgery as soon as possible and maybe some of those patients could've had improvement like the man above had they been given some extra time to heal and try different things?  Of course, most guys that have had peyronies for awhile are desperate and their self esteem has taken a hit, so the doctors know they are likely to be swayed into a major surgery when they otherwise wouldn't.

Do remember also that there is a lot more $$$ in doing surgeries than there is in prescribing pills like Pentox.  Pentox, over time, kills inflammation.  But it takes a long time to achieve that via a slow and arduous process.  I am convinced that if you kill the inflammation, you can kill the Peyronie's.  To that end I am now focusing on Pentox (to partially inhibit TGF Beta1), and Vitamin D, both delivered by both pills and full spectrum light (to partially protect healthy tissue from the remaining TGF Beta1).  This is markedly shrinking the inflammation driven plaques and I am hoping over time it will actually eat away at the fibrosis.  This, like the equally effective VED, is tedious, but this is not an easy disease to manage and for me the results have been more than worth the effort required to achieve them.  Peyronie's, in my veiw, is a disease where just stopping it from progressing is hugely helpful.  - George

[Nils]

Hi everyone!

I'm a 30 year old guy from Sweden. I am very happy to have found this forum and have spent a lot of time reading your posts. It has been very informative and I am very impressed, and happy to see, the care you show for each other, and the high morale you have in the fight against this disease. It fills me with hope!
I would like to tell you my case, so that you who have greater knowledge than me in this disease could please maybe help me understand some things about this disease.  In my readings on this forum I have not found any case that sound exactly like mine – but I have also learned that no two cases seem to be the same...
My first observation was 2 ½ years ago. I noticed that my penis during erections become bent upwards 10-20 degrees starting about 1 ½ inch from glans penis. I had no pain at all. At the time I didn't much care about it.

2 years ago I quit using Propecia (which I had taken to stop hair loss) after I read about some adverse effects of it, one of which was Peyronies disease. Now realizing that my curvature was a progressing disease I launched into a heavy depression. Now I also developed prostatitits, inflammation in the prostate, although the doctors couldn't feel any enlargement of the prostate I felt the classical prostatitis pains in pelvis, testicles and in the penis. I could never tell if pain in penis was due to inflammation in the penis or sensations caused by the prostate inflammation.

I was put on SSRI for depression and my pains subsided over a couple of weeks to occasional light sensations in penis and elsewhere in genital area. By this time I finally got a time at an urologist. He did an exam of the penis and couldn't find any plaques, neither have I myself ever felt one. He prescribed diklofenak (NSAID), I don't know the English name for it, it is a COX inhibitor, meant to stop inflammation.

During the year that followed my observations of my penis, of course, became daily routine as I worried about what was going to come. My pain sensations didn't get any better or worse, actually I felt that the NSAID made the sensations a bit more nagging when I had them. I have never had any pain during erection or ejaculation, but after ejaculation I sometimes feel sensations in penis and prostate after an hour or so (yet again don't know if pain in penis is "real").

Since the NSAID didn't seem to do anything we quit it a year ago – I haven't really felt any difference.

During the year on med I saw that the penis became a bit shorter, thinner, and the "shell" around the penis felt less flexible. After I quit taking the med a year ago I haven't notices any dramatic changes, it's really hard for me to know when and where the changes occurred, and if they have stopped.
Now I recently quit SSRI but my worries about this disease made the depression come back, and with it the pains in the urogenital area (it seems that negative thoughts and anxiety make me feel pain down there). I have restarted SSRI and will try to phase it out more slowly in a while, but before that I MUST learn to cope with this disease to be able to live normally.

My largest fear is this: Although the current changes are bearable and I can have sex normally (my wife is wonderfully understanding) I fear that I am still waiting for the worst since most seem to say that plaque formation and calcification is the end state. But I haven't felt any plaque or hard tissue does this mean that this will come, and when it comes my penis will become either too short or too crooked to have sex? That's how I think. It has become such a great fear

It's been 2 ½ years since I saw the first curvature, still no plaques, and not so severe changes, is it possible that my disease have stopped some time ago without these things, and if it continues, that maybe my type of inflammation doesn't give well defined plaques?

Man this post became large... I guess I really needed to get the story out of me. If you have read this far and have something to say, please know that it would be greatly appreciated! My wife and I will soon start to try to have kids, I fear so much that progression of this disease will prevent us...

I am currently not on any medication for Peyronies Disease, I never believed NSAID helped, I was told vitamin E didn't help. I have a really hard time seeing my uro prescripe me anything except NSAID for this, the knowledge in Sweden about Peyronies Disease is null... Only good thing about it is that our healthcare is free, what good that now is when what you get is nothing...

[Old Man]

Nils:

Welcome to the forum. You have a case quit similar to a number of guys on the forum. Each and every case of Peyronies Disease is different in some way from any other. You are headed in the right direction by seeking professional help early on in the process it takes. Pain is hard to bear especially in the urogenital area like yours.

The prostatitis may contribute to the pain you are having. I know when I had prostatitis that my whole "bottom area" hurt all the time. Taking antibiotics for that usually relieved the pain. You said that you prescribed Diclofenac (U.S. spelling) which is an NSAID.  I took Mobic for several years during the brand name stage and later my insurance switched me over to the Meloxicam. I also took Diclofenac for a while. These meds are in the potassium family of drugs and really did nothing for my osteo arthritis. I am now on other meds.

Anyway, you should seek help for the inflammation since that will abate the pain and possibly slow down the Peyronies Disease symptom advancement. You should get started on some forum of treatment for Peyronies Disease as soon as possible. If there are no good qualified uros in Sweden that are experience with Peyronies Disease, you might try to find one on the main continent.

Again, welcome and read up on all the posts as time permits and you might find something that will help in your situation.

Old Man

[gerMike]

Just want to note some things, especially to Iceman.

I think the combination of the VED and Pentox can make things worse in my opinion. Pentox makes red blood cells more flexible to reach even the smallest space. Imagine you use the VED or get a stronger errection. The fibrin will get trapped into even smaller areas where it wouldnt be if you dont take Pentox. This is just my theory and I really noticed that my pain level increased under Pentox use.

Pentox also often increases my heart beat (often >100 bpm) and stress levels that lead to heavy contraction of the errectile tissue that creates even more stress. I'm sure thats not good. Every contraction of the penis should be avoided to keep it oxigenated.

My last week was pure horror. I woke up in the night with 120 pulse, my penis contracted to the size (girthwise) of the palm. I began to panic. Lost 5kg in one week. Errections last week were impossible and I thought now I have 100% ED. Everyday my heart was beating like hell. My penis was heavily shrunken. In the VED tube it seemed that I lose up to 1cm everyday. Had 3cm under normal in the end under the SAME vacuum pressure! I stopped Pentox, Vitamin D and L-Arginin. Went to a doctor and got a sedative tablet (Insidon 50mg). The only things I still took at this point were Potaba 4x3g, Full spectrum vitamin E 1x400 per day, 1 Flaxseed oil (1000mg) capsule per day, 25mg zinc 1x per day,  Iontophoresis 1-2x / day with Verapamil.

What happened after I took the tablet was unbelievable. My penis that was shrunken for at least 2 weeks now got fuller and bigger. In my flaccid state I really had a full penis again (fuller than at least the last 2 months), got my self esteem back immediately. That state continued to be the case since last 2 days. Not one contraction. Pain disappeared. Even in my left leg pain disappeared where I often get some diffuse associated pain when my penis gets attacked by peyronies/inflammation. This is very strange, no turtle effect since then.

My message is when you have pain, try to stop Pentox for a test. Take Flaxseed oil capsule or Omega 3-6-9. And most important get out of the stress, panic or depression! This is extremely important. You won't believe me until you see it yourself. If you stress yourself because your peyronies eats you up get a sedative tablet immediately and get down. I'm sure stress is the worst enemy and gets inflammation even higher and contracts the penis. It may be wise to stop VED for some days when in heavy pain, and do some basic stretches of the penis in the flaccid state to keep the penis somewhat stretched and prevent to trap further blood.

Some quick information about me:
Age 32, Peyronies Disease for 9 years developed slowly after a plop sound, Both sides of the penis completely scared (so penis straight again but shorter), plaque and scar everywhere, nearly no healthy tissue left, Erection length down from 18cm to 14cm. Thickness down from 5cm to 3.8cm. Took Potaba for last 5 years. Was not able to stop the progress of scaring but maybe slowed it down. Penis looks similar to turbodog75's in the yahoo Peyronies Disease board.

[Iceman]

ths germike - OLDMAN or GEORGE999 - could you please comment on the thoughts of germike below - he seems to be thinking that VED usage and pentox combination is bad - well for the past 2 days Ive had no pain and this was after 4 days of immense pain - just cant work this out.....maybe its the MOBIC I am taking - one thing for SURE and thats STRESS = Peyronies Pain 110% - whenever I am stressed at work ( my job can be a bit stressful) my dick shrinks and lo n behold the inflammation goes wild - the liitle nobule becomes like a rock - even typing this is tensing things a bit - so I truely believe in what germike says - keep the stress down to reduce the pain...

[George999]

Iceman,  You are really hitting on something with your last post.  Stress will ABSOLUTELY make your Peyronie's inflammation worse.  Actually, its not the stress, its your abnormal physiological response to stress.  This is all tied into hormones and other metabolic issues.  I used to have this REALLY bad.  Even now if I get really stressed out, my Peyronie's flares like a torch in the night.  Only, now, unlike a few years ago, it quickly gets under control again.  So what you are experiencing is typical.  Several things have really helped me with this over time.  They are really things like eliminating high glycemic carbs in my diet, getting lots of physical activity, and also the lights.

As for germike's comment, I really think we have to look to scientific data and not personal experience and speculation to sort these things out.  Dr. Lue has invested a lot of time and effort in exploring the benefits of Pentoxifylline and has even written a paper on it.  Dr. Lue is a highly respected expert on Peyronie's.  When it comes to the efficacy and safety of Pentox, I would trust his judgement on that.  Secondly, I, personally, have no experience regarding concurrent use of VED and Pentox.  Perhaps Tim can comment on that combination.  But I have no reason to believe it would not be safe.  It would take some common sense in regard to the amount of vacuum one applies.

All of these approaches take months if not years to show benefit.  In the meantime there will be setbacks.  If we are doing nothing, we blame the setbacks on Peyronie's.  If we are using VED and Pentox, we blame them on VED and Pentox.  It can all become very confusing.  That is why it is important to do the things we KNOW work or that we KNOW SHOULD work.  From then on we can ignore the normal ups and downs of the syndrome and gradually things should get better.  Of course if something really nasty or unexpected happens, we do need to pay attention to that and realize that people can have unusual reactions to these treatments and we need to be aware of that.  But it is all to easy to bounce around from one thing to another and never accomplish anything.  - George

[jesmid]

Hello,

This is my first post here. I have read some of the posts and find this an excellent resource! Anyway, I hope I am posting in the right place, if not, my apologies.

My situation is embarrassing, but here goes. I believe I might have hurt myself through jelqing exercises which involve pulling-type movements on the penis to promote straightening and size gain. About one month ago, I started feeling a numbness at the base of the left side but I didn't think much of it. This feeling has now developed into a constant inflammation I feel in the flaccid state. It doesn't seem to be there when I am erect but returns promptly after the erection subsides. I haven't used my penis for anything except going to the bathroom for about one week now but still the inflammatory feeling persists. When I feel it, I compare the left(inflamed) side with the right side and both feel identical in shape but the left side feels harder. Not just in one spot, but rather up the whole length of the left side it feels slightly tougher than the right side. My erection appears unchanged, though I worry I am in the initial stage of Peyronie's and that this will get worse.

I should note that I have always had a slight curve to the left(hence the jelqing) since childhood. I believe I got this through an unorthodox masturbation method I'd adopted when discovering masturbation. Instead of the standard jerking motion, I used to rub it against my left leg. As a result, my flaccid state always points to the left but my erection only has a very slight curve. I am now 36 and this has been the case since perhaps the age of 12 or 13. I feel this curve has worsened recently, though it's hard to say as now I scrutinize it constantly because of anxiety and am not sure how bad it in fact was prior to trauma.

I have an appointment with my doctor but this is over a month away. I feel that if it is Peyronie's, I need to do something about it as soon as possible. I am not masturbating or having sex because I am scared of making it worse. I have recently started taking Vitamin E(200 IU three times a day). I am also trying to control my mind which at times gets really stressed over the situation, and I believe this only makes it worse. Does anybody have any suggestions? I know my case is not severe(yet), but it has nevertheless affected me significantly because of a fear of what is to come. I want to avoid any worsening of this condition if it is Peyronie's in the acute phase. Please give any advice, it would be greatly appreciated.  

[jackp]

The only thing I would add until you see a urologist is Advil 2 or 3 times a day. This should help with the inflammation.

As far as sex goes. Use it to loose it. Unless it is painful do not stop having sex. IMHO.

Jackp

[Tim468]

Welcome Jesmid,

Welcome to the forum!

Read the "Child Boards" and you will find a lot of helpful information. Hang in there - you will see that a lot of potential help is there.

You are smart to go to  a urologist. Have you been seen by a good urologist? "Good" is subjective, but many of us need to search (long and hard) to find one willing to provide us supportive help.

In terms of dealing with things up front, don't make hasty decisions or choices. This is the time to sit back and to gather some information before acting. I say this with one exception - most of us feel that regular erections are good for erectile tissue (use it or lose it, they say, and it may be true for Peyronie's Disease). Therefore, getting better blood flow with Viagra (or other similar drugs) may help, as well as using the vacuum erection device (VED) which will pull fresh blood in (like an erection) as well as stretching out the tissue to prevent or fix contraction and worsening of the angle. Reading about the VED on the Child Boards may help you with this concept.

Welcome! Read up here and I hope this message helps!

Tim

[bluth]

How common is it to have new plaques develop during the first few months?

I was diagnosed about 3.5 months ago and had one bump. Now I just found another one next to the old one a few days ago and am very  worried. Do people know if it is normal to develop a new plaque this early on?

I'm very much hoping for reassuring answers...  

[Iceman]

bluth - bumps develop all the time  - they come they go - you are probably doing the right thing with the treatments - maybe talk to oldman about ved usage...

[Ted Williams]

Hey Bluth,

The same thing happened to me.  This is the inflammatory phase.  You are best served by controlling your inflammation.  This can be done with diet and supplements.  Most notably, Vitamin E.  Catch me off-line.  I'll share what I did and what I wish I did to control it better.  

Ted.

[Old Man]

Ted:

Suggest that you post your information on the main forum as well so that any and all may have the benefit of what you experienced and what you did. We need to share information as we never know when it might be just the item that an individual needs.

Old Man  

[Ted Williams]

Hey Old Man,

Your right.  O.K.  I am going to give broad discussion points about nutrition and what I have discovered along the way.  THIS IS NOT INTENDED TO SERVE AS MEDICAL ADVICE.  IT IS JUST MY UNDERSTANDING FROM MY EXPERIENCE AND A PHARMA/SCIENCE/HOSPITAL BACKGROUND.  CONSULT A PHYSICIAN!!!  The biggest thing is that a great deal of inflammation in our bodies come as a result of free-radicals in our lives and in our diets.  They come as a result of poor nutrition and the biggest offender, smoking.  Alcohol has its impact as well.  Essentially, in attacking any condition with inflammation, you need to adjust your diet to take out all of the free-radicals we pollute ourselves with that aid in causing inflammation.  Soda is a good example.  Get rid of it.  When I worked in Phamra, I learned alot about different auto-immune disorders (especially with the skin) as being an over-expression of inflammation resulting in one condition or the other.  Now some are not a result of free-radicals, but just a natural over-expression in our bodies.  Think of Asthma.  This is the inflammation of the lungs.  What do we do for that?  We give it steroids.  Steroids just stop all cell activity.  So good and bad activities get stopped by steroids and the results are all the issues associated steroids.  Example, eczema is an auto-immune inflammatory condition that causes the skin to rash up.  If you over-do it with steroids on the skin, you thin out the skin and cause greater issues.  It can be very dangerous.  

So I look at this as four fold:  

1.  Control the impact of free-radicals in your body by enhancing your diet.  I don't believe you need to get all these fancy things that are out there... The drinks and the powders and such.  You just need to get anti-oxidants into your diet.  A handful of blue berries twice a day will be great.  Get your leafy greens, eat your colored fruit.  Eat fresh fruits and vegetables... Is that so hard?  But most of us don't.  Stop introducing free-radicals into your system.  This comes from artificially processed foods, smoking and intense drinking.  (Red wine is loaded with anti-oxidants.  Don't stop that!  Dark chocolates, certain types of pressed coffees, green tea are all loaded with anti-oxidants, enjoy them!)  Stop doing drugs... for starters, it makes you a douche bag... seriously, the only ones that like the fact that you do drugs are douche bags and really, who cares what they think?  Furthermore, drugs introduce all the free-radicals and inflammatory triggers that cause these problems.  

2.  Avoid inflammatory triggers.  When we eat lots of processed sugars, we cause our insulin to spike up in ways that our evolution did not intend.  The result?  Inflammatory triggers in our pancrease shut down our ability to control the sugar.  You can develop diabetes by the stress of these spikes.  When we toss our body's chemistry out of whack, we cause a whole bunch of inflammatory triggers through-out our bodies.  Eliminate all processed sugars.  I try to even drink low sugar orange juice when I can find it.  By doing this, we re-establish the balance our body actually wants.  You will see, sweet foods are an addiction.  You will go through a crash, but you will return a better man.  Of course smoking, drugs etc all cause this as well.  Make the effort, quit doing them all... Your penis will thank you.  Your family will too...  Take some time, listen to your body and see what causes inflammation.  No joke, you will feel it in your Peyronie's plaque.  I bet most of us will describe the fact that our plaques seem the smallest in the morning.  We haven't started torturing our bodies yet and as such, there is no inflammatory actions going on yet.  My condition would be worse after a bender of smoking and drinking... Just my observation.  There are theories on keeping your body acidic and alkaline... I am not skilled in explaining this, but I get it... My diet promotes this type of balance.

3.  Be careful of the physical impact you have on your penis.  Masturbation.  Use lube.  You are in an inflammatory state.  Think of what happens if you scratch at a bug bite.  It gets worse.  Same with your plaque.  None of us are going to stop, but use lube.  Even if its olive oil, especially during the inflammatory stage, don't go to town on your fella.  This goes for sex as well.  Work it in.  If you are able to have sex then work lube into your routine.  Most will describe a night in their life when they had sex and they felt like their penis was worn out afterwards.  When you get past inflammation and things seem to settle in, its your call if you want to return to being a sexual gymnast.  

4.  Finally... supplements... I don't want to sound like a shill, but I am a believer in the philosophy put forward by Dr. Herazy.  He offers sound, reasonable theories on why a man should take his approach.  We have no solid scientific studies to support why we do anything for our condition and Dr. Herazy seems to have a handle on why he does what he does.  For about a year, I took his products religiously.  What I saw was a softening of the scar, a secesation of the inflammation and some improvement.  I stopped taking it for a while to see if this was just natural progression and I now feel that my scars have hardened up a bit and my healing has not progressed.  So I just re-ordered my old routine and I will be back in full action soon.  He has several products he suggests for inflammation, most notably his brands of Vitamin E.  He goes to great lengths to describe the different types of Vitamin-E available and why his brands are the right choice.  I read the studies and I think he is on to something.  I know I received benefit from Nattokinase as well... I used to suffer from cold-hands and I believe Nattokinase benefited me in that area by improving circulation.  I'm not going to over-do-it with the supplements talk.  Read his web-site and see if you agree.

Lastly, where inflammation is the issue... I would include a baby aspirin in my routine.  It increases blood circulation and reduces inflammation.  I didn't want to take so much that I created Cox-II issues in my GI, but I figured a couple of baby aspirins a day couldn't hurt.  

That is my philosophy and I'm sticking to it.  I will stay on this lifestyle change and health kick until I die.  As for Peyronie's, I think this will be just what is required to maximize my success when I get my Xiaflex shots... Let's go FDA!!! get it done!  

IN CONCLUSION:  YOUR GOAL IS TO MINIMIZE THE PROGRESSION!!!  IF YOUR CONDITION GOES NO FURTHER THAN WHAT YOU HAVE TODAY, YOU HAVE SUCCESS!!!  

1.  Reduce Free-Radicals in Your Body By Introducing Lots of Anti-Oxidants.
2.  Reduce Inflammatory Triggers in Your Body By Controlling Your Diet.
3.  Take it Easy on Your Fella.  Lube Up.  Physical trauma worsens localized inflammation.  (think bug-bite.)
4.  Take Certain Supplements to Control Your Inflammation ESPECIALLY During This Phase.  

I wish I did ALL of this when my Peyronie's was just an annoying little lump off very little significance... (I was still the champ!)  

I can get into how circulation of blood and lymph is an issue with Peyronie's as well, but that is a topic for another time.  

Regards,

Ted

[jackisback]

Hi Ted, I like your post. A few questions/comments:

As for alcohol, do you think drinking in moderation is still a problem if drinking vodka or gin & tonic type drinks or American beers? Or is the only safe alcohol red wine and possibly the more expensive, less processed beers? (note to readers: Ted didn't imply that any beer was better than another, this is my assumption)

How much is Dr. Herazy's most expensive plan? Isn't it like $500 per month? I just find it a bit hard to believe anyone who is pushing his customers for that much money. But not just that, I haven't heard any mention of Pentox from him (correct me if I'm missing something on that). It sounds to me like the one drug that makes the biggest impact is the one that he's not pushing because it's the one that he can't make any money off of since it's prescription.  This is why I haven't given him any credibility in the past, but if you're convinced then that is something.

[Ted Williams]

Hey Jackisback:

Dr. Herazy is not allowed to promote prescription drugs on his web-site.  If Dr. Leu says that Pentox is good, then go for it.  Dr. Herazy's thing is natural cures.  All of the compounds he suggests are naturally available, non-pharmaceutical drugs.  I would take them all together.  As for the cost of the neutra-ceuticals, I haven't really thought about the cost in a bit.  It is less than $500 a month.  I was maybe spending that every 3 months or so for my routine.  You can scale up to as much as you want, or you can take less.  It is up to you.  

As for alcohol.  Excess of alcohol causes stress on your system.  I suspect we have all experienced this.  The long term effects of alcohol is obvious on the faces of serious alcoholics.  Cyrosis of the liver comes as a result of the stress put on our liver to remove the toxins associated with drinking too much... Moderation... moderation... moderation... When I mentioned red-wine, I mentioned it because I wanted to illustrate that this drink in particular is very high in anti-oxidants... It is one of the theories as to why the French seem to smoke, eat tons of cheese and fatty foods and yet somehow manage to live to be 200 years old.  ;-)

Hope that's helpful...  

[jackisback]

Well Ted, you know he has these plans on his website: small, medium, and large. It doesn't say how long one order of these plans will last you though. Do you happen to know? The largest plan says that it's $607, and I think that's too much.  Also, he uses MSM. Many people have suggested a possible link between the MSM/Glucosamine mix and Peyronie's. I personally was using both when I first started having symptoms, and for a while after that, too.  I might consider buying his ebook and see what I think.

[Ted Williams]

Hey Jackisback,

How much does success cost?  Basically he has a bunch of things in his large plan that I don't buy... I did my experiments.  PABA, E500, E/400/400, Natto and Fibrozyme are my go-tos.  You will figure out what your body likes and doesn't like.  I don't take MSM.  When I first started, I got a massive rash from everything I took.  It could have been contact dermatitis from cleaning my basement, but I think it was the MSM, so I just laid off it.  I haven't taken it since.  Buy his book, but read his web-site as well.  He does a good job explaining the "why" behind his therapies.  

Regards,

Ted.

[bluth]

Is there any sort of medical agreement on how long it takes a plaque to "calcify"? Based upon my readings so far in the forums it seems that calcium is present in a higher level in plaque's, but I am a bit unclear as to when the plaque calcify or become bonelike.

Does this happen in all peyronie's cases? Is there a general timeline for the process?  

[didi20031]

hm... I am wondering what is the difference between peyronies and corporal fibrosis. I found that a peyronies plaque can grow into the corpora cavernosa as well... Is corporal fibrosis worse than peyronies? How can I find out if what I have is peyronies or corporal fibrosis?

[jackp]

Corporal Fibrosis is worse than peyronies IHMO.
In my case peyronies from 1995. The curve corrected in about 12-18 months but the side effect was I lost almost 1.5 inches. In 1995 there was nothing the doctors could do.
Corporal Fibrosis is another story. It happens from lack of erections and/or sticking a needle in the penis with trimix or PGE1 for erections. In my case the corporal fibrosis was also a product of venous leakage. When the venous leakage got so bad that I could not maintain an erection I tried the shots. That was a big mistake because the shots made the corporal fibrosis worse.
Loss of night time erections from ED and venous leakage also contributed to corporal fibrosis.
My wife and I had successful intercourse for years with peyronies only. After the other problems developed I was 100% impotent and used the VED.
I started the VED exercise that was recommended by Old Man a year ago last October and gained back almost 1/2 of my penile loss.
DO NOT EVER STICK A NEEDLE IN YOUR PENIS!! For erections.
With all my problems I opted for an implant. That was 4 weeks ago and waiting another 2 weeks to get it activated. Doctor said that the VED exercise helped me gain back all the size I could get because of the peyronies scar on top of my penis. He also said keep the VED exercise up until about 2 days before surgery for the best outcome. So far I am well satisfied with the implant results.
The best way to find out what you have is go to a doctor that is a Male Sexual Function specialist. General Practice uro's do not have all the skills you need.
Hope this helps.
Jackp

[LWillisjr]

Bluth,

Regarding your question:
Is there any sort of medical agreement on how long it takes a plaque to "calcify"?

In my case, I had a dopplar ultrasound 7 months after the first onset of Peyronies. The doctor said I as just beginning to show very early signs of calcification. My understanding is that full calcification can occur 18-24 months after first onset. Maybe others will have better information on this.

[didi20031]

thanks jackp. is it possible to have corporal fibrosis after just four months of peyronies? I have the impression to feel a lump that does not seem to be located on the tunica, but deeper inside my penis. do I have to worry about corporal fibrosis in this case?

Another question: I can still get erections (even if they are softer than before) but my glans is not as sensitive to stimulation as before the onset of peyronies. Do you think that this loss of feeling is permanent? Is it possible to regain it when the inflammatory phase is over (if this will happen at all...)? Any experiences?

[newguy]

What are the actual consequences of calcification in terms of receiving treatment? Does it effectively rule out improvement and/or recovery via the various currently available treatments (VED, traction, oral treatments etc). How about future treatments such as xiaflex? could be dissolve calcified areas?

Also, do you view treatments started early -pre-calcification- such as pentox  + other other treatments, VED) as being able to greatly reduce/stop calcification in many or most cases?

[jackp]

newguy
In 1995 when my peyronies first hit I went to my local urologist. He gave me a Rx for Potaba and told me to take 400IU of Vitamin E three times a day.
Later that year I had to have a "roto rooter" for enlarged prostate and I asked him while in the hospital could he do anything else about peyronies. He said he could not.
In 1998 I was one of the first to get a Rx for Viagra. Did not work well. Later after complaining of ED he did a Color Doppler and said I had venous leakage. He offered me trimix injections (not FDA approved). After not being able to get any straight answers as to where to get trimix (he wanted to sell it to me out of his office at a BIG markup.)
I switched urologist and he gave me a Rx for trimix and the name of a local pharmacy that could compound it. Little to no help. After several changes to the highest formula and 10 units still little to no help. He scheduled an implant.
Just before the implant I had chest pains and had to have stents placed in my heart. Had to delay the implant for 1 year. I asked the uro what could I do for sex and he Rx-ed a VED and I had it fit in his office.
Did not get the proper instructions (or I did not read them properly) and proceded to pump as much as I could stand. I caused a bruise that took weeks to heal. Then I only used the VED and constriction ring for sex.
10/06 During implant surgery the doctor punctured my urethra and aborted the procedure. Wanted me to wait 6 months before retrying.
I started to research and found this site. Got in touch with Old Man and he put me on to the proper exercise for the VED I have.
Started looking for a surgeon here that I had confidence in that could do a successful implant. No one here with a population of around 1 million. I was Finlay refereed to Vanderbilt.
After more health problems I had the implant procedure 10/23/08. Doctor said that he had only seen 1 other patient with urethra puncture and he had never do that. They answered my questions before I could ask ad did a great job.
As for all the new drug and injections in trial I hope they work. At 66 and a 13 year struggle with Peyronies, Ed, Venous Leakage, and corporal fibrosis I did not feel I had the time to wait.
Yes there was some loss of feelings in the head because of peyronies. Also I have back problems and urologist said I could be related to that. I had back surgery on L4-L5 in January. I have a follow up appointment with the back doctor in April and he said if I was still having problems he could run a nerve test.  
The only thing after my penis curve corrected and I lost about 1.5 inches that has helped is the VED and the exercise Old Man gave me. In about a year of VED exercise I gained back about 1/2 of peyronies loss. Doctor said that was all I could get because of the peyronies scar on top of my penis.
The only thing that worked for me was the proper use of the VED. I highly recommend you start Old Man's exercise as soon as possible.
Jackp

[gerMike]

My Peyronies Disease progresses without any real sign of a stop. Both sides of the penis are scarred after 9 years into this disease.

Got my blood levels of testosterone checked today => 2,7ng/ml at age 32!

I think there must be a link to low testosterone for the ones who get progressively worse over time.