Progression of Peyronie's Disease

[Old Man]

ocelot556:

Loss of nerve sensation with Peyronies Disease does occur. It does not affect all, but does in some cases. I had some of this with one of my bouts with Peyronies Disease and the doc said that what caused it was the nerves being sort of pinched by the plaque and nodule build up on the penile shaft.

He said there was really nothing that could be done about it. He suggested that I continue with my VED therapy and that possibly the nerves would be relieved when the plaque and nodules were reduced, etc.

As we all know, Peyronies Disease is very devastating in its effect on our psyche and there seems to be nothing we can do about it. Maybe someone else has had this effect and relate if they had any success in treating it.

Old Man

[alcohen]

Sadly, I am experiencing this and it definitely feels exactly how you are describing it Ocelot.  I feel like the nerve endings are being blocked.  There is a complete lack of pleasure of any kind when being touched on my penis in the places where it used to really feel great which has definitely contributed to my ED and deep depression.  Things feel very numb.  My penis fills some of the way with blood but certainly nowhere near enough for penetration of any kind.  Things just feel odd and rough when my penis is being handled, even very very gently which is the only thing I allow at all.  My girlfriend offered to try her mouth the other night and I had to look down just to make sure that it was making contact with my penis in any way.  I did not feel anything.  I just politely asked her to stop and slinked away depressed.  This condition is unbelievably horrible.  I have to wait until December 29th to go back to Dr. Carson to have the Doppler ultrasound done and it feels like forever until then.  I then remember that even then I will obviously not be fixed at my appointment, it is simply to check to make sure that I have Peyronie's, which unfortunately it is obvious to me that I do have.  I am very disappointed that my life has taken this turn.  I am in the middle of my toughest semester yet in college and find myself really bogged down with everything...

Anyone else had the numbness in regards to Peyronie's and find a way to combat it?  The joy and release in my life has been stripped away.  Not only do I hurt all of the time but I also have nonstop wet dreams because it has always been the case in my life that if I did not have an orgasm for 3 or 4 days in a row I would have a wet dream.  I was taking a nap on a couch in the library at school between classes the other day and had one.  UNBELIEVABLY embarrasing.  Luckily I had enough time to make it home in between classes.  And there is nothing I can do because it hurts too much to touch some parts of my penis and the other parts are too numb to feel any sensation.  So I simply wait for the next wet dream and try not to fall asleep at school anymore.  What a miserable situation.  

Nobody even believes me when I try to explain things about this to them.  They just assume that I am exaggerating as they cannot even believe being in my shoes as they think it is simply not possible.  Unfortunately, I am not only not exaggerating but I am also hiding some of my pain and experiences as well.  There is nothing quite like waking up to a neverending nightmare.  My girlfriend is the sweetest and most beautiful girl I have ever met and people get upset with me because they can't understand why I am not happy.  I just purchased my first house.  I got a kitten.  I am doing great in school.  But I am in constant pain and hobble most of the time when I walk.  My penis always feels like it is on fire.  And there is no possible way that I can have sex.  I can't even get off via masterbation either from myself or from my girlfriend.  Oral sex is pointless as I cannot even feel anything...

Sheesh.  Ridiculous.      

[newguy]

I've posted here a few times previously, and unfortunately for me i'm finding myself in a position best described as "in limbo". In my teenage years (8 years ago) I developed a curve , I suspect due to trauma. Over the years, my best guess would be that the condition (later diagnosed as peyronies) got worse.. the curve at worst was maybe 35 degrees to the left.

Then I found this forum. I started  using the VED and though I didn't notice immediate results over the period of a few months there was a definite improvement. I would say that the curve reduced to around 25- 30 degrees. Not groundbreaking but an improvement, a step forward.

The problem occured when I introduced a traction device. I think that I somewhat overextended, thinking that I could enhance improvements. At the time there were no warning signs but later that day my penis seems to shink and I felt pain. I then struggled to gain an erection for a couple of days and was very concerned. A string of sorts appear to develop and a very small mass (a couple of days after the incident). I can confirm that the string and mass are contained within the skin of the penis and not actually attached to the shaft.  I have no opinion of whether that is good or bad, but the information may help you to form an opinion of my current condition.

Anyhow a pain continued for a month or so... it lessened over time but seemed to become somewhat inflammed whenever I engaged in sexual activity. I'm now 5 months on and there is STILL an occasional vague pain. This has worried me greatly and makes me worry about what next step I should take, or more importantly what the end game is going to be here.

So anyway, back to NOW. On the plus side:

- Research into peyronies seems to be coming along at an encouraging rate (finally)

- The curve right now is still at the slightly improved state than years ago (30 degrees-ish)

- I'm taking vit e, pentox, ACL, viagra etc so am at least being proactive (i'm not going to reintroduce VED etc at this stage unless the curve worstens. I am fearful of aggrevating the condition)


On the negative side:

- There is still occasional pain which suggests inflammation, which worries me greatly. It all seems so "textbook".

- There is a string under the skin and a small mass (again not attached to the penis, but under the skin. It isn't changing, worstening, painful or visible in of itself, but it is there)


So thats where I am. The situation could be worse I suppose, but as i'm sure you can understand it is far from ideal. In a way I feel like i'm cursed. I managed to improve my situation slightly only or it to "potentially" get worse. It's as if i've taken one step forward and two steps back. Not ideal.


I'm excited that a few of you seem to be on the brink of entering into clinical trials because it potentially throws a lifeline to all of us in the long run. I will continue with pentox, viagra and so on, knowing that I am doing the best that I possibly can at this moment in time. I'm playing the waiting game. This is just an update really, because I'm aware that nobody has a magical remedy. It's all about time... and i'm hoping that time is on my side.

[Tim468]

I missed the part where you went to the doctor to have this new development examined...

Tim

[newguy]

Tim - Well noticed. I had enough trouble getting hold of pentox previously and after  a few negative experiences I basically decided to go my own way. Urologists in the UK, in my experience seem even less knowledgable or willing to help than abroad. That's my experience of it anyway. Of course, I could book an appointment further afield, but what would that actually achieve at this point? There is surely no treatment that could help me that I don't already know about, and there is nothing that anyone could tell me that hasn't run through my mind already. What benefit would it serve?

edit: I think i sound overly negative here.. what i'm trying it get at is that i'm in a very delicate mindset due to this, and i don't want to make that worse. If I honestly thought that returning to see a urologist over this recent issue would result in me receveiving one single treatment which is useful or that I am not currently taking, then I would do so.

[Tim468]

Fair enough - it is frustrating. However, you have to consider the possibility that they might pick up something important, and treatable.

Tim

[newguy]

Tim - You make a good point. I think in a sense I am just scared of hearing more bad news. I will stick to my regime of pentox and various vitamins etc and carefully monitor any changes as well as drug development progress.

EDIT: When looking through the site I noticed that a great many people have passed through the peyronies forum over the years. Inevitably they drift off for a number of reasons. Maybe because they have given up with their fight against peyronies, maybe because they experienced a level of success. Do you think it'd be a good idea to send out a follow-up email to all members of the site in order to try to reach out to some of these people? It could provide potentially useful insights.  

[hornman]

Could one of you long timers explain "bouts" of this disease.  Can I expect it to disappear and then return at some time?  Or will it stay the way it is only to have a "bout" making it a little worse.  I know eveyone is different, but in a general sense what can one expect? I myself thought I was coming to the end of the painful stage but alas the pain is back full force.

[Old Man]

hornman:

In my case, when I say bouts of Peyronies Disease I mean the recurrence of the original onset. In other words, mine first developed at the age of 24. After much anguish, blood, sweat and tears got it into somewhat of a remission stage. At that point most of the symptoms were gone except the hourglass "ring" about the middle of the shaft.

After several years went by, the mess returned with plaque, nodules and the hourglass ring spread wider and curves developed again. They reached abut 45 degrees downward and the right at the same time. Many therapies were tried and finally got the stuff back under control again so to speak.

Later, in 1995, when I had a radical retropubic prostatectomy and I was idle as far as sexual activity was concerned, it came back with more difficult symptoms. At the same time due to non nerve sparing surgery, I was rendered totally impotent and not able to get erections naturally. The various erectile pills, penile injections and later the urethral MUSE were tried. None worked and the VED was introduced into the "healing" regimen. After about 6 months of VED usage, the Peyronies Disease went away again.

As a result of all the above "bouts" I am at present free on symptoms except maybe a very slight hourglass indentation about the middle of the left side of my shaft.

Bottom line, bouts simply means the return of earlier cases of Peyronies Disease. Some men have a return of them, some do not, but for the most part once you have had it, there seems to be no absolute "cure" for this mess.  Keeping one's penis healthy with good blood flow seems to be the key to the answer. Hopefully, the above helps answer your questions, but remember as you said, each and every case is totally different from another.

Old Man

[Tim468]

I am, unfortunately, having a "bout" right now. Like others, I am trying to figure out what triggered it (I have some theories, but am quite uncertain so will not share them now). What I know is this: all day yesterday I had an aching feeling in my penis accompanied by a "shrinking" sensation associated with contraction of the smooth muscles that get us (literally) "uptight and outta sight".

I know from experience that when I look like I just got out of freezing water, and have that aching feeling, that something new will pop up. Sure enough, last night, erections caused some pain near the head, more on the left (where I have been more "active" lately. As is usually the case (but not always) visible change is not immediately apparent, but often within a few days I will have a new dent.

I plan to gently use the VED, take 400 IU of E twice daily, add advil 6-800 2-3 times a day, and use some iontophoresis of verapamil ( I still have some around) and to stop drinking one cup of coffee a day (I let the habit creep back), and see what will happen. For other health reasons I have sort of avoided Pentox, but I think it is time to get on it.

Tim

[nemo]

Tim, man, I'm sorry to hear that.  I hope this turns out to surprise you by not developing like you expect. I'll be sending some positive vibes your way, partner.

[ocelot556]

I'm having a new bout as well, Tim. Some plaques which had looked to have been halted have started gaining "mass" (or at least are more visible nodules under the surface) and I'm having some mild ed - pain, a slight dulling of sensation in the penis, and difficulty maintaining erections. This might be due to exhaustion, as I've been working 12 hour shifts and spent the weekend away on a hectic trip.

I've got a very libidinous new girlfriend, which is always fun, but sucks when my sexual performance has to have a huge dropoff because of the flame-up. Haven't had to use viagra in a month or two, but will have to go back and take things slow.

I was wondering if anyone, like me, seems to experience pain/inflammation in association with pressure changes? It seems like whenever I wake up sore or feeling "swollen" or inflamed beneath the skin I can look outside and see a storm coming or already upon us.

[Tim468]

Wow Ocelot - what an interesting connection to make. I have not even thought about it.

I am taking Cialis at about 5-10 mg daily, rather than Viagra before sex. It works better for erectile quality, nocturnal erections and makes the side effects much less. I bought it from a online source in liquid form that is almost certainly a copyright infringement, though it was marketed for "research purposes only".

Tim

[ocelot556]

As someone who's had his share of ligament pulls and tendon sprains (I never broke a bone in my life, all my young damage was to soft tissue) I can attest to the fact that the old adage "I can feel a storm coming in my bones" is truth -- the barometer drops, and every place I've ever hurt, well, hurts. My penis the most - but it also has the most and most recent inflammation.

It feels like every one of my inflammatory episodes happens when it's raining, or about to. I figure there might be some connection to the scar tissue and the pressure change, it contracts to increased pressure perhaps, but I'm not scientifically minded like others here. I only report what I can observe. If anyone else notices this phenomenon, please let me know.

[Iceman]

Can anyone answer this - Ive had Peyronies Disease now for 8 months and it seems that the pain is now reducing or at least is not as frequent - does this mean that now I am entering onto the stable phase where calcification will take place and then ED - what happens now and is there a way to avoid this calcification - or is this inevitable and its a slow decline into oblivion....Im a little confused -
I am on:
Pentox x 3 x 400mg
ALC x 3 x 500mg
L-Arginine x 3 x 1000mg per day
L-Carnosine x 3 x 500mg per day
Tribulus x 3 1000mg
ViT e x 1000iu
Fish oil
And lastly VED daily

[Tim468]

Iceman,

Your question confuses me a bit. You have been reading here a while, so you should now know that many different outcomes occur. Some (like me) have mini-flareups over many years time. OTOH, I do not know if I have had calcification (I think maybe a little bit) but still get workable and fun erections (made more workable and fun with PDE5 inhibitors) after 30 years of having Peyronie's. So I do not know why you pose this question.

If you are saying that you are worried about that happening, well I hear that!

But you are doing about everything that one can do and you are getting fewer symptoms and it sounds like you are getting, dare I say it, better!

Hang in there man. It is not all gloom and doom.

Tim

[Iceman]

thx tim - its just that last night I had a really bad dream about Peyronies Disease and dreamt that my dick was curved about 90 degrees and very very bent - I woke up all flustered and freaking out!! -  

[George999]

Ice,  I really agree with Tim on this point.  There is, as I'm sure you are aware, a documented case of a guy who lost a calcification while on Pentox.  You are on Pentox.  If Pentox caused a calcification to disappear, don't you think it would probably help prevent them from forming?  I think you are in GOOD shape.  I would add some Vitamin D though since its cheap and fairly easy to get anywhere in the world and the research is compelling in my opinion.  - George

[Iceman]

GEORGE999 - I bought VIT D3 on your advice 2 weeks ago and have been taking it since - i forgot to add that to my list..

TIM468 - thx for your words - i know ive been a member here for a long time its just that my imagination can sometimes get the better of me and Im trying to keep this psycologically positive and have a good frame of mind - youre words and those on the forum here help me maintain a balance and peace of mind - without this forum I promise you I would be going absolutely and completely mental - god help those poor blokes pre internet days...

[nab]

Hello guys. I posted a few weeks ago about an injury I received during intercourse after which there was swelling, a slight curve to the left (10-15 degrees at the most) and a large hematoma that formed and has been with me now for 10 weeks post-injury. The hematoma is quite large, 2x2 cm perhaps, with fluctuations.

I went to the specialist today, he seemed reasonable and knowledgable, and said that I had fractured my penis and that this tear in the corpus Cavernosum had simply not shown up on the ultrasound. Instead of immediate operation to repair the tear (because it had not shown up on the u/s) I left it because i had been told my body would 'reabsorb' the blood. But there has not been much action on that front. The specialist said the tear had healed over and left scar tissue on the left corpus cav. causing the bend to the left during erection. The few weeks after the injury I had intercourse a few times even though things were very unstable and only 65% functional, then finally appreciating the severity of the injury I left it well alone. I wish I hadn't but hey...

Not sure of the functionality atm, haven't tried for a while. I occasionally feel a bit of action down there but don't follow it through. The hematoma is slightly tender when pressed hard, and above the lump, below the head of the penis there is some mild pain when blood is flowing. The doc said basically there was nothing I could do but wait, and that things would never be the same as they once were, that there will be curvature due to scar tissue and a reduction in blood circulation, and that the hematoma may never go away but possibly reduce in size. I just turned 27 so that's a difficult prognosis to take in. But I get the feeling it is correct, I just don't know to what extent. In hindsight I wonder if I should have asked about pentox?

The question I have is, how would you approach this, knowing what you all do about injuries to this sensitive organ? Has anyone had anything similar to this occur? Are there any treatments that might help reduce the lump/hematoma as I get the feeling this is really messing with the overall stability of erections and certainly with the blood flow. Especially above the lump things feel unstable. I really would like to lessen this big lump in the middle of my penis. Also, I am wondering what is the difference between this scar tissue and peyronie's disease, as the doc did not believe that a diagnosis of peyronie's was appropriate for my case.

Basically I have to sit it out and wait, but he said putting it to use could be beneficial, and I think perhaps this is the case as I feel my sex-drive waning and creating and interesting mind-body conundrum where I can't tell where one influence begins (the injury) and the other ends (my mental state).

Thanks in advance for any advice and taking the time out to read this, it's appreciated. I apologise if the treatment advice is the same as last time (Vit E, ALC etc.), but I am wondering about this hematoma.

nab

[Iceman]

TIM/OLDMAN - anyone -

I stopped using the VED about 10 days ago as the battery operated one broke and suddenly a new plaque appeared after I thought that I was getting better - and with the plaque there is the pain and dent - - - -- has this something to do with the break in the VED usage or something else - I am alos on ALC and pentox and the other recommended supps - so this is a very REAL shock to me - whats going n as I thought that I was getting better - what should I do as Im freaking out a bit now and the abyss seems a lot bigger now -  

[Old Man]

Iceman:

What you are experiencing is not uncommon with Peyronies Disease. You never know when a new "bout" will occur. I really don't think that breaking your VED has anything to do with the new outbreak. You need to get the new pump and get back into the regimen again.

One of my friends here in my hometown broke his pump handle just a few days after he got his VED. He called the company and they sent him a replacement pump in less than 48 hours. If I remember right, you got yours in your country through some help from the sales and marketing manager at Augusta. If this is right, you should go back to the distributor where you got your unit and ask for help there.

I no longer have the contact at Augusta as he moved on to another company. His replacement at this time has not been made, so I have no real good source of help there until I get rapport established again.

Sorry, I cannot offer any more help at this time other than to say that you should get back into the VED therapy as soon as possible.

Regards, Old Man

[Iceman]

OLDMAN - i just got the replacement VED ( hand pump version) and I am back on using it - I thought that being on pentox would control the new bouts  - is there a reason why this hasnt - sorry for my ignornace

[Old Man]

Iceman:

I will defer an answer about the Pentox to George999 since I have had no experience with many oral therapies for Peyronies Disease. He can explain what might be going with you.

I am glad that you got the replacement hand pump model. It gives a little bit better controll over the battery powered model. Also, I believe that the hand pumps are made more sturdy than the others.

I am sure that once George reads your question, he will help out.

Old Man

[Iceman]

OLDMAN - im in that much pain to day - I had to go to the doc for some other elbow joint inflammation and I got prescribed Celebrex - it seems to have helped a bit - its terrible just when I thought that I was out of the woods it starts to hurt again -

whats the point in all these supps like alc etc - i feel real defeated now and im starting to get a bit depressed

[George999]

Iceman,  I really don't know what to tell you except that Peyronie's is just really unpredictable.  I am SURE that there is a cause for flareups, but trying to pin that cause down is like searching for a needle in the haystack.  The whole inflammation issue also tends to be systemic.  In my case I am now dealing with fairly intense leg pain.  I had it very controlled for a while.  Its amazing that sometimes you find supplements that control things, but its like water rising behind a dam.  Eventually it just seems to top the dam and spill out everywhere.  The good news, though, is that usually it runs its course and things get quiet again.  In regards to the supplements, especially things like ALC and Pentox, the problem is that we would probably be worse off without them.  Same with VED.  There is no cure at this point.  That is the reality.  There are treatments that seem to help.  We need to keep taking them.  But its really frustrating, I feel your pain, and this is not just a trite statement, because I am in the same boat.  Right now my Peyronie's is REALLY under control.  The best in a long time.  But my legs are on fire with inflammation.  But I just keep plodding along.  Taking the Pentox, ALC, etc.  I am making a few modifications.  I am adding some more antioxidants to see if that helps, and temporarily moving away from full spec E to natural Alpha-Tocopherol since Gamma E with all its benefits can be pro-inflammatory in some cases.  I am also taking the D3 and using a quartz lamp on my whole body.  This provides infrared heat plus 300 nanometer UV which converts cholesterol to D3 in the tissues.  It seems to have been helpful with the Peyronie's.  It was initially very helpful with the leg pain (virtually wiping it out) but now the benefits have faded over the last few days.  So I am not sure where to go with it from here.  Sorry not to be able to be more help.  I do wish you the best, but I have my own problems right now.  Whatever you do, don't let yourself drown in depression, tomorrow is a new and likely brighter day for all of us.  - George

[Iceman]

thx george - i appreciate your words.....ill bounce back i always do.....

[Old Man]

Iceman:

I echo George999's words about everything he wrote in his post below. Right now, I too experience pain like never before with my legs, feet, ankles and back. Had back surgery many years ago which went bad and now it is impossible to do any further surgery. Spinal stenosis has set in and the nerves are slowly but surely being squeezed down more narrow each year. Pain killers help some, but not always.

So, what I am saying is this like George, you have to adjust to the pain and simply just not let it get you down. Some days, if I gave in to my pain and other problems, I would just go out and end it all. But, I know that is not the way to handle the situation. Bottom line, do your best to think positive and engage in physical activities every chance you get to take your mind off your problems. Know that it is hard to do, but at least try.

It does help to vent your frustration in some manner and the best way to do this is to talk to a trusted friend or your spouse and let it all hang out. If there is anything we on the forum can to do help, just let it be known and we will be there for you all possible. Distance precludes talking with you in person, but the web is the next best thing, so use it to your advantage.

As far as the VED therapy is concerned, you might want to lay off it for a while to get the pain and inflammation under more control. Then resume the therapy on a very mild to moderate level. Keep your chin up!!!!

Regards, Old Man

[jackp]

Iceman
I like Old Man had back pain for over 20 years. Went to a DC for years and this finally stopped helping.
I'm lucky I found a nuero surgeon that had a new procedure for spinal stenosis and degenerated disk. Had the surgery in January and now almost pain free, I can predict weather changes.
This is going to happen with peyronies one day. Some one will come up with a procedure that helps. Never Ever - Never Ever give up. I also know what pain is but will not give in to it.
Like Old Man said if you need support there are a lot of guys here to help if only to listen.
Good Luck
Jackp

[Iceman]

thx guys - your support is very very helpful - one can only imaging life pre this forum for Peyronies Disease sufferers

[Hawk]

Iceman,

You make a good point.  In some ways I and maybe others take this forum for granted at times, but facing some of these issues with Peyronies Disease in isolation can be very tough.  We recently hit 2000 registered users and many more guests.  

I am glad you made me take a minute to stop an think that the forum has had a positive impact on people as they face a potential crisis.

Hawk

[didi20031]

Iceman
I feel really sorry and shocked for what you are experiencing at the moment. My peyronies started about three months ago and I am on pentox an ALC (plus vit. E, D3 and arginine) too. It really makes me sad to read that these medications are not able to stop the progression of your Peyronies Disease. However, like all the others here wrote: never ever give up! Tomorrow is another day and we must not give up! We will get through this!!!

George and Old man
what you wrote about the systemic character of inflammation is very interesting! I cannot remember any injury or trauma to my penis which could have caused my Peyronies Disease. Anyway, exactly when my Peyronies Disease started I had severe problems with my teeth (root canal treatment for 3 teeth!). Additionally I had a very stressful spring this year which may have weakened my immune system too.

All
and now something that should keep our hopes "alive". I know one has always to be sceptical on stories about spontaneous remission... anyway! It is a current post (October 9th) I found on a German Peyronies Disease forum. The post is from a 40 year old guy from Vienna. I have read all his posts from the last 2 years and that brought me to the conclusion that his post is not a fake! To those of you who understand German I would recommend to read the original post (http://de.groups.yahoo.com/group/InduratioPenisPlastica-2/message/1213). For the others I will try to give a short summary:

The guy writes that his Peyronies Disease started some 2 years ago with a pea sized hard lump. In the following months this lump "moved" up and down his shaft leaving severe indentations below the glans and in the middle of his shaft such as multiple hard plaques. The diagnosis was "aggressively progressive Peyronies Disease". He also had ED, which he thinks was mostly for psychological reasons. He had suffered for nearly two years when the pea sized lump which in his experience usually indicated the beginning of formation of new plaques or indentations, showed near the basis of his penis. He was anticipating a new "catastrophe" but it did not happen. On the contrary all the indentations and plaques started to resolve. He writes that at the moment he seems totally cured (even if he knows that it may restart at any time, since Peyronies Disease is so unpredictable).  

I don't want to comment on how probable or improbable it is that something similar will happen to us. It doesn't matter at the moment. It is much more important that it DID happen to that guy and it COULD happen to us too!!! Keep your chin up!!!

[j]

iceman said "one can only imaging life pre this forum ..."

I don't have to imagine it - I remember. And it was pretty creepy. There was a "forum" of sorts, an unmoderated madhouse that BSTC set up and abandoned.  It became a powerful magnet for idiots, jerks and dweebs with no lives, all desperately wanting to post nonsense containing the word "penis" and toss obscenities at each other.   Anyone coming across that forum quickly learned that not only did Peyronie's cause your dick to bend, it made you crazy too.  What a great public service.

I think BSTC eventually realized that the forum was not just an embarrassment but looked bad to investors, so they deleted most of it. But by then, they'd sold off the rights to injectable collagenase and no longer gave a fig.

Here we have a forum that preserves anonymity but has moderation and controlled logons. People with actual medical knowledge are starting to post here. Potentially effective treatments are discussed.  We even start tip-toeing around the edges of the psychological problems surrounding this condition, and sometimes talk about them realistically.  

So we no longer have to feel like we've fallen down 3 flights of stairs and are laying in a pool of stagnant water in life's sub-basement.  We can be like normal people - maybe even BE normal people.

[George999]

Didi makes a comment about a German claiming an extended full remission.  I have no doubt that this is possible.  After all, there are documented cases of amazing remissions with cancer, which is far more daunting than Peyronie's.  Peyronie's and all of the other inflammation/autoimmune driven diseases wax and wane.  They get alternatively better and worse.  If we could just learn *ALL* of the factors driving that process, we would be close to a solution.  I do believe the pieces are coming together.  If you parse through this forum, you will find a long list of external factors that seem to aggravate Peyronie's AND other factors that seem to alleviate Peyronie's.  As you start to put these things together (admittedly a daunting task) things CAN get better.  In the process, it is important to carefully note those things that seem to make us better and those things that seem to make us worse.  But it is equally important to proceed in an evidence based fashion, not wandering around in response to emotions or reaction to the twists and turns of the syndrome.  We *KNOW* that Pentox is helpful because A) there is at least one study that lends credence to that conclusion, B) the pharmacology of the drug indicates potential benefit, and C) there are multiple highly trained specialists advocating its use.  We *HIGHLY SUSPECT* ALC to be helpful because there is at least one study that shows benefit.  We should *EXPECT* Vitamin D to be helpful due to emerging details of its pharmacology in terms of inflammation/autoimmune processes AND studies showing people with inflammation/autoimmune type diseases to be typically deficient.  AND we *KNOW* the VED to be helpful due to countless Peyronie's sufferers who testify as to its usefulness.  I am fully convinced there is a way out of this problem.  We haven't fully identified it yet but we are extremely close.

The recent explosion of knowledge regarding Vitamin D is just huge.  And with Vitamin D it is not simply a matter of just popping a few tabs and things rapidly get better.  It takes many months on large doses of Vitamin D to build up serum Vitamin D levels.  And there are still open questions as to whether the body can actually convert that nutrient to its active form in sufficient quantity to do the job.  But there is no doubt in my mind that proper use of Vitamin D is just one more strategy that can at least slow this thing down.  But I would caution anyone taking large doses of Vitamin D to coordinate it with your doctor and be sure to get a simple and inexpensive blood test for serum calcium levels so that you don't poison yourself.  It is also important to be careful not to take in too much calcium when taking in high amounts of Vitamin D as this can also drive serum calcium levels to high.  And excessively high serum calcium levels can put you at risk of dying.  So this is a serious issue.  But the potential benefits of Vitamin D supplementation really are huge in my perception.  - George

[Iceman]

GEORGE999 - are you talking about Vitamin D3 or a generic vitamin D?

Thx

[Angus]

  Welcome Whyme. It's ok to calm down now because I have some news for you. Life as you know it isn't over and you don't have to stay in the abyss you mention. You don't mention the degree of your curve or whether you are able to have intercourse or not. Go to your uro and report back with what is found and what is said. If you've lurked here for a while you know what most men are told to do... or not do. Popular answers are go on vitamin E for 6 months and see what happens, wait one year and see what happens, leap right in to surgery and being told it's the "only cure" and many other things.
  You have a challenge coming up and that is to leave the abyss behind. It is in your own mind and no doubt there are friends and family near you that are having a hard time figuring out what's changed with you. If you are diagnosed with Peyronies, then so be it. Life is not over. You will meet the girl of your dreams and fall in love. If you base future relationships on your penis, its shape and whether it's what you see as being visually acceptable, then that's what the relationship will be built upon and that's not good, so you need to stop planning future relationships progression on the shape of your penis. If your curve is gentle and not too extreme, you know from reading here that intercourse is still possible and life will go on. Do not dwell in the abyss worrying about what women might think of what your penis looks like. It's not worth it, is usually based on mis-conceptions of how women think, and is destructive thought. Let it go because you are a lot more ok right now than you think.
  This post isn't meant to demean you or shock you. Every man on this board has endured his personal abyss now or in the past with this disease. I welcome you to the board as a place where you can get real answers to real questions about your situation. There is a "women speak out" thread that I hope you've read as you might find womens answers to mens questions about how women are affected by this condition a little surprising. Don't put notions of how you believe women think about penises in the mix yet as it's not worth it and probably somewhat off-base. A lot of guys here just KNEW we had it nailed and figured women would shun us as freaks, and we were wrong.
  Come back with news from your uro visit. Post questions you will have about what you are told to do or not do. You've got a lot of livin' to do so decide right here and now that you will start the process of deciding that you will not be miserable over this. I can't paraphrase everything said on this board about this, but I hope this is a start for you.  

[George999]

GEORGE999 - are you talking about Vitamin D3 or a generic vitamin D?

Thx

Vitamin D IS Vitamin D.  The "3" in D3 merely indicates the FORMULATION of the particular product.  Vitamin D is commonly available as Vitamin D2 and Vitamin D3.  Vitamin D2 is the original Vitamin D supplement.  Vitamin D2 is the form found in some mushrooms and used to be used to fortify foods.  It is the plant based version.  Vitamin D3, a newer product is an exact match to the Vitamin D produced by exposure to sunlight.  Vitamin D3 is the form found in fish and most other animal based and fortified foods.  Both have the same effect of raising levels of Vitamin D in the body, but Vitamin D3 is considered to be more than three times more effective than D2.  The process is that as one takes larger doses of Vitamin D, most of that Vitamin D is soaked up by fat cells which function as a sponge to store Vitamin D in the body.  The more saturated that sponge becomes, the higher the level of available Vitamin D in the bloodstream becomes.  When the sponge becomes totally saturated, toxicity emerges.  Thats where we DON'T want to go.  Vitamin D resulting from sun exposure becomes immediately diffused in the local tissue and is thus likely able to temporarily boost localized levels of Vitamin D higher than oral consumption.  Oral consumption raises the baseline levels of serum Vitamin D.  Vitamin D is Anti-Inflammatory but Inflammation consumes Vitamin D in the Body.  So inflammation tends to lower Vitamin D levels which results in higher levels of inflammation with the potential for a sort of looping feedback effect.  A lot more information on Vitamin D can be found on Wikipedia and The US National Institutes of Health Office of Dietary Supplements Site.  Wikipedia offers up diverse but not totally authoritative information while the NIH site offers a narrower scope of very authoritative information.  - George

PS - The studies on Vitamin D just continue to pour forth.  Here is an example.

[Iceman]

whyme 08 - have you tried to go on pentox and ALC

[Angus]

Some guys take a picture of the curve,  print it and take it to the uro. A tracing or outline on paper would do the job as it would show the uro exactly what you have. You'll also want to be ready with your story as to what happened, if anything, right before the symptoms started. Report back with what the uro says and we'll go from there.
   I re-read your first post. You are an informed, intelligent young man that has had this condition dropped in your lap. I know first hand how this disease (or condition or whatever we want to call it) can wrack a man, and how it affects a young man forming his plans for the future family that is in his dreams. Step 1 will be to stop convincing yourself that you are now useless to women. You don't see it that way right now, but as hard to believe as that is, it is true. Men see their usefulness or utility to women as 95% dick and 5% everything else. I suggest, if you haven't already done so, that you start by ignoring the tv commercials for various pills that enlarge and empower the penis into some kind of nuclear flux capacitor that can lay waste to the countryside and that women only live to attack these supermen in elevators. The media is powerful. Marketing people aren't stupid and the commercials appeal to a mans displaced wish to be "all that" and to be an irresistible superman with a ball bat for a penis that can't turn around without knocking over table lamps.
  Step 2 will be to focus on your lifes positive attributes and I'm sure there are many. Begin supplements for general health. Work out more. If you've been laying around a lot, force yourself out and get something going like a racketball game with someone you haven't seen for years. Get up, move and get the blood pumping. Enjoy friends, work and family. This condition has got you down, but do not obsess on this. Your life and future isn't over... it's just begun. One of our senior members here has had Peyronies since his 20's. He has studied, read, seen uros and done all manner of treatments for many years. He is now in his 70's and going strong and has a list of life accomplishments and experiences that is staggering. And he has licked Peyronies. And all his information is here. It wasn't an easy battle and it certainly wasn't quick. There is no cure. Nope. None, unless you accept surgery as a cure... personally I do not. But there are those on the forum that refuse to accept that as an answer. There is enough information here to help straighten out minds and penises. Some men respond with straighter erections and some don't. Lots of men who are dedicated to therapy and stick with a program see better results than those who play around with a treatment and don't stick with it.
  I'm no shrink or superman, but I do know a bit about how Peyronies doesn't play fair and how it affects men. Try your hardest to put this thing in its place. You've got to have a lot of questions... find the threads and post away.  

[Old Man]

Whyme08:

I am the guy Angus posted about having Peyronies Disease in my early 20s. Yes, I too had the same feelings you have now and Angus has given you some sage advice about what to do with your mindset at this time. Get out of the doldrums with obsession about Peyronies Disease and its effects on your future life.

Many treatments, therapies and the like have gone under the bridge of life for me in finding something that worked to help with my several bouts with Peyronies Disease. Yes, I say bouts, because it has come and gone several times during the 50 odd years since it first struck.
As Angus says, get to thinking positive, get the professional help you need, and get on with your life. All is not lost simply because you have this problem.

I have been happily married for over 45 years now, have three grown children and eight grandchildren. So, you can see that Peyronies Disease has not hampered me in making a life for myself with a very understanding wife. Peyronies Disease should not cause you any major problem if you think positive and get the help you desperately need at this time.

Take Angus' advice, do your homework with the uro/specialist and report back to us with what you were told about your case. Then, we can possibly get your on the right track with some form of therapy.

Good luck to you and keep the faith, something good can and will happen for you.

Old Man

[didi20031]

Sorry for the "stupid" question, but English is not my mother tongue... I found "bb sized" or "bb shaped" in a lot of posts here. What does that mean?

Sorry for bothering you!

[Angus]

The only stupid question is the one that is never asked! Ask any time anything that you read is confusing and maybe we can iron out the little quirks of the English language.
A BB is a small round pellet shot from airguns that used to be common in the U.S. with young boys, so lots of North American men are familiar with BB's and know right away what size they are. A BB is 0.177 US inches in diameter, or metric 0.45 cm in diameter. So this refers to a fairly small nodule or knot-like object on the forum.  

[didi20031]

Thanks a lot, Angus!  

[Thanatos]

Does anyone know if an hourglass shape necessarily portends Peyronies Disease?

I'm 26, and a year ago I had a Nesbit Plication to correct a deeply downward curvature.  I had it after years of struggling with Peyronies Disease and I thought I had finally put it all behind me.  My erection pointed to the left a bit after the surgery, but otherwise was straight, and I was really grateful.

But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid).  I'm terrified I'm redeveloping Peyronie's Disease.  I haven't noticed any changes to my erection yet, but I'm so afraid that it's only a matter of time.

My big problem is that I lost my health insurance since I had the surgery, and while I might get it back soon, I have nobody to ask about this problem.

[newguy]

For those suffering penile pain that eventually leads to curvature, do you think there is any correlation whatsoever between the length of time pain is present (weeks/months/6 months+ etc )to the eventual outcome?

[Hawk]

Does anyone know if an hourglass shape necessarily portends Peyronies Disease? ...

But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid).

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  

[newguy]

But over the past couple of weeks, for no apparent reason, I've redeveloped the hourglass shape when my penis is flaccid (I always had the hourglass when my penis was flaccid or semi-flaccid).  I'm terrified I'm redeveloping Peyronie's Disease.  I haven't noticed any changes to my erection yet, but I'm so afraid that it's only a matter of time.

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.

[wayne999]

Just yesterday I noticed that my erection now point out very slightly to the right by <5 degrees (in addition to the already downward curve). What I did yesterday involved putting on some tighter underwear and putting my flaccid penis against my stomach, i tried that only for maybe a few hours. I also noticed that in addition the slight rightward deviation, one of the "chord" like objects near the base of my penis (on the right side) seems to have protruded more when erection was obtained. Will this hopefully go away very soon?! Or should i be going to some emergency department ?! I'm very very confused and anxious now, I have a uro appointment in a few days could it wait for that?! HELP

[worried]

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 already have so much other stress in my life on top of this.   I have not started any treatment as from what I read here none of the above treatment is worthwhile and a waste of time and money SOoooooo...  what do I do first. Get a new doc?   Please rec. one in NYC area (milhall?)  I got this from what I can remember first noticing it in march/april.  Do I skip above and do traction (what unit), vacum ( what unit),  pentox, collgnase?  both traction and ved are not anything I could do with my work or lifestyle...should I just watch and wait and see if it resolves itself as most case do?  I am in very good health, fit and have no other medical issues or meds. I think I better start doing something effective soon as it is now clear a bend is going to be added to the hourglass.  


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...

[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???!!!