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

[slowandsteady]

For me, girl on top is more painful, specifically on the top of the penis closer to the base.

Two simple things I recommend trying that really have no downside is to get vitamin D levels at least to 50 ng/ml (get D3 in a gelcap, not any dry version) and take a magnesium supplement (I like magnesium malate or glycinate, but avoid taking so much that loose stools result). These two supplements are good for anyone, not just those with Peyronies Disease.

s&s

[Worriedwife]

I got back from a trip last night, and my husband voiced a concern about strange "indentations" on his erect penis. I, trying to assure him it was nothing, googled it and came upon "peyronies disease" and have not got us both concerned. He is 28, I'm 27- after researching it sounds like he may have the "hourglass" indentations. He's only noticed it very recently, he's also had occasional pain during an erection or orgasm... I never thought anything of it as he didn't act like it was crazy painful or seem concerned so I just thought that was "normal". He's always had a slight curve, but again, thought it was normal "hanging a little to the left". You can't really see the indents by looking, but by feeling, and now that I read about the hard "plaque" he says he can feel something in there. He's never had any erectile disfunction, and never had any issues with orgasms, but again- I have nothing to compare it to... So not sure I would know if anything was "abnormal". I just feel so awful wondering if I was too rough at some point and caused this... I never knew anything like this could happen. Now I'm worried about hurting him more.... We are going to see a urologist... But in the meantime... Should we refrain, or just be gentle? Does "girl on top" position tend to cause this? Because that's one of our fav positions and I need to know if that, or anything else should be avoided. If this is just the first "phase" could his penis go on to get the curvature in addition to the hourglass indents, and does the hourglass tend to cause erectile disfunction down the road? I am just so fearful of the prospect of not being able to take care of my man... I know this has to be so much more scary for him- how can I support and encourage him thru this sensitive issue? Any advice is greatly appreciated. Thanks-
worried wife

[newguy]

Well, if this has been going on for 5 years, but has never manifested itself in an erect state, or has not been accompanied by pain, injury or anything like that, then I don't think you need to worry really. In your shoes, I would only take action should I find that my penis curves in an erect state. Your comments so far do not point towards any peyronie's plaque being present in my view. 

[calamity]

Well by leaning i mean when erected then it just points away at different angle, it doesn't actually bend or curve. But when flaccid then i have a noticeable curve. It's pretty weird actually, it seems like the total opposite of peryonie's description, as my penis actually straightens when erected.

For example after a shower in flaccid state, the curve gets more noticeable (about 30-40 degrees). I always tuck it to the right side of shorts, so it kinda gets straightened. To sum it up, i have about 30 degree curve to the left on my penis when it's flaccid, but when erected it just slightly points away to the left. If i remember correctly this state just suddenly came about 5 years ago and haven't progressed since.

Can you guys, tell me what is the difference of normal curve and peyronie's disease. I can achieve erection, but i noticed lately it's not what it used to be (that part is probably just mental).

[lwillisjr]

I agree with Newguy.

I'm not sure what you mean when you say your penis "leans". If you mean while flacid that it seems to point away from your body at a different angle other than straight, I'm not sure that means anything. Many men seem to have a particular way their penis hangs when flacid. Ever here of the term "dress right" or "dress left"?

Here is the main thing. Can you achieve erections and is your erection fully functioning? If so, then stop worrying.

[calamity]

Thank's for answering.

Well, i noticed that my penis started leaning to the left a bit, about 5 years ago (i'm in my early twenties now). The curvature hasn't changed since. I never felt pain, and haven't find any lump as i mentioned. I used to "hump the bed" when i was a kid, and deeply regret it now.

I noticed after masturbation, that the curve increases in flaccid state, for a few hours. When i tuck it to the right side of my shorts, after a while, the curve is almost non present (but still leans to the left a little bit).

When my penis is erected i notice the curve straightens, but is always leaning to the left. It's not crooked erection or anything, it just leans to the left when erected. The curve is actually worse when in flaccid state. (sometimes touches my left leg)

I found out about peyronies when i googled about loss of morning wood, and weak erections. Yeah i know, i should go to urologist, but i am too ashamed

[newguy]

Hi guys. I am new here, and for now i have only one short question.

Is scar tissue, or plaque really that noticeable?? I suspect i might have peyronies (or mild case of it), but i can't feel anything on my "tool". I have searched it thoroughly, and can't feel, nor see any lumps, or growth on it.

It differs from person to person. In your case, if you can't feel plaque as such I wouldn't say that you can rule peyronie's out.  Without knowing more info it's difficult to say. I will say that on other forums I've seen people worried about peyronie's and the images posted appear to me to be of a perfectly normal penis. If you have noticed any changed in the curvature of your penis though, this would be something of concern. Such changes may or may not occur alongside pain, or a noteworthy injury of some kind.

You should go to a urologist if you have concerns in this area.

[calamity]

Hi guys. I am new here, and for now i have only one short question.

Is scar tissue, or plaque really that noticeable?? I suspect i might have peyronies (or mild case of it), but i can't feel anything on my "tool". I have searched it thoroughly, and can't feel, nor see any lumps, or growth on it.

[ComeBacKid]

Ocelot,

I wouldn't be to concerned about that.  You could mention it to your urologist.  Many things change the color of the head of the penis.  Some are whitish or more pale, some purple, some red.  Getting an erection can change the color, being hot or warm, being cold, ever notice how your veins turn purple color in cold weather? 

Comebackid

[ocelot556]

I have noticed as my Peyronies Disease progresses, for better and worse, that the head of my penis is changing color. When I was younger (I am 26 now, developed Peyronies Disease at 23) the glans of my penis was generally pink to reddish, and warm to the touch even flaccid. Now, my penis is often pale to white, and sometimes - like when I pull it from my fly to urinate - it can be really white, though it seems to gain a LITTLE color while it's in my hand. It remains pale though.

I have noticed that the color of the glans turns back to red when I've used Viagra. Is this a bloodflow issue and - more importantly - would the lack of an adequate blood supply lead down the road to some sort of tissue death?

I know this might be more of a question for a urologist. You point me to the urologist who is willing to listen thoughtfully  and answer these questions, and I'll show you an out of the ordinary MD!

[exoduS]

hello all..

as i stated i had been using some vitamins for my injury and recently started using vitamin e cream. it also has vitamin a in it. which worked great with me.. i know have very little pain and also dont have firm flaccid state. it feels better when i hold it. still there is pain and these varicosed veins and pain comes from them.

also the hourglass shape while getting erect is not disturbing me anymore as it feels normal.

has anyone tried vitamin e cream?? as it releaved a lot pain from me. maybe it can also help ur symptoms..

[lwillisjr]

i am trying to check the forums but i dont see anyone who really got over this problem.

Hmmmmmm... try here....
http://www.peyroniesforum.net/index.php/topic,466.0.html

[chiguy]

It's possible that the condition has progressed since you got the ultrasound, especially if you were still within the active phase of the disease. A lot of us question the effectiveness of some of the treatments on those websites, but this forum is by far the best source of information. Dr. Therazy's institute claims to have a high success rate, but most mainstream doctors do not utilize his treatments, so you must use them at your own risk if you choose.

[exoduS]

Hello. i had a penile doppler ultrasound 2-3 months ago and it was clear. but something strange happened. when they injected me the solution i didnt get any erections but the guy still checked my penis with the prob and in his report it was written i had enough erections and normal blood flow. also the images were showing the blood flow rate in the report.

i have met a site that there are people claiming they got rid of this situation or at least correct some of it. but dont know if it is real or the guy is trying to sell some products or videos. there people were claiming that they had a lot correction in 1-2 months with some supplements also vitamin e.

peyronies-disease-help. com/

and here is a site that i found recently and it is a good resource to find information about sex and penis.

cure-erectile-dysfunction. org/

his reply to my question about peynorie was to make hot wraps, vitamin e cream, using some multivitamins and it will be ok in some months.

i am trying to check the forums but i dont see anyone who really got over this problem.

i can say vitamin e cream helped my feeling for flaccid state as it doesnt feel so hard and i dont feel the band around but still when it is getting erect the band is visible and when it is erect middle is more flat.

i will report you my improvements and check your forum more..

thanks a lot

[chiguy]

Exodus,

Sorry to hear you may be affected by this condition. You need to go to a male sexual function specialist, preferably one that specializes in peyronies. Not sure which country or state you are in, but let us know so maybe we can find a good one for you.

Read the board and all of the forums, and they should provide more in depth information. In the meantime, continue with the vitamin E, although many say it doesn't help. Monitor the situation. It sounds like you could be in the early stages.

The first 12 months are the active phase, where the condition progresses. Certain medications like pentox (trental) are proven to be effective, but a urologist must prescribe them.

You can also start taking 2000 mg a day of l-arginine supplements, which can be purchased over the counter at any drug store.

To determine if you have peyronie's, you should get a penile doppler ultrasound. There is plenty of information on that on this board.

Let us know if you have further questions.

[exoduS]

Hello all. i am very new to site and has been searching for peyronie for few days.

i injured my penis while doing penis enlargement excersizes back in June 2009. i had varicosed veins in my penis and they were so painful and disturbing. i have been taking vitamin e, detralex(vein pill), and recently started a multivitamin supply.

i didnt have any deformity of penis till 2 weeks ago. i recently realised while it is getting erect i see that hourglass shape then it turns to normal. also when it is in flaccid state it is so hard and like something is squezing it in the middle and gives great discomfort.

i feel it is very hard in the root of penis. i was in several urologists and they never told me i have peynorie but i also didnt have anything hard in my penis till last weeks. it is something like surrounding root of my penis.

i am thinking maybe the reason for this is the supplement i took and there are many vitamins, iron , calcium and others. so maybe some ingredients made it hard??

already i have been taking vitamin e for 2 months and i just started using vitamin e cream, it feels better when it is flaccid now. can u give me some recommendations about my situation? i feel it is very hard in the root of penis.

i am only 25 years old and feel very down..

[George999]

have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......

Bob, are you referring to Potaba?  - George

[bobshouse]

have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......

[ohno]

I'm pretty new to this forum and there are many people on here with a lot more experience than I... but I think you should read about pentox (enter it into the search - find Dr. Lue's study) and take that with you to the urologist. Many doctors don't have a clue about this condition and if it is confirmed you will want to immediately start on pentox (unless there is some medical condition which might prohibit its use). Dr. Mulhall indicated to me that had I started on pentox during the early stages it would have corrected the condition. Hopefully you don't have peyronie's. Good luck.

[chiguy]

Nebula,

Depending on where you are located, you may be able to make an appointment with a urologist. Most of us on the forum are from the United States. Depending on your insurance carrier, you may be able to make an appointment immediately or you may need a referral. If you are in Great Britain or Canada, I think you will need to go to your general practitioner first for a referral to a urologist.

This disease is best treated early, assuming you have it. You may have a congenital curvature, which has been present since birth, but becomes noticeable during puberty. This is fixed with a plication surgery, where they shorten the longer side to match the shorter side.

If you have peyronie's, most doctors will start you with natural vitamin E supplements. I take 4 400mg pills a day. Most forum members take far less. There are several options in treating peyronie's, but it is important you confirm you have the disease first. There is also the possibility of scar tissue unrelated to peyronie's.

The most important thing is to make the appointment with a urologist immediately if you can. What geographic area do you live? A lot of forum members know the best doctors to treat peyronie's in both the US and Great Britain. We can provide some recommendation. Also, describe your insurance carrier.

[BentYoung]

Question - Have any of you seen vein or vascular changes since Peyronies Disease. I have the band form of scarring that causes hourglass/upwards curve. I noticed that my dorsal vein has been getting progressively bigger since this began, which makes sense because scarring intersects the vein along the top and causes restriction. Is it possible for this vein to rupture due to the pathology of the scarring placing pressure on it? Has anyone heard of vein rupturing due to Peyronies Disease? If so, what should I look for? 

[nebula]

Hi, I'm new here. 19 years old.

In August of this year, my girlfriend and I were messing around and she wound up masturbating me. We were lying in kind of an awkward position, and she was being somewhat aggressive. Afterward, there was some redness and slight pain but I thought nothing of it and figured it would go away in a few days.

After a few days, the redness did go down. It was still slightly sore, but nothing unbearable or anything, so I just went on with my business. I did notice something though; I was still able to get erections, but they didn't seem as strong. AND, it didn't hurt, but there was definitely some sort of sensation that I hadn't experienced before.

A few weeks later, my girlfriend sees my penis and says "Why are you crooked?". This would have been about the middle of September. It's worth noting that prior to this occasion, she had never see my penis in light before because we had only been dating for a short period of time and anything we did was done in the dark. When she said this, my penis WAS bending rather to the left. And for the life of me, I couldn't remember if my penis had always looked like that. I know it seems stupid since we see the thing every day, but I just couldn't. I started thinking "Have I always been like this or is this some sort of recent development?"

So around that time I started researching some things online. Through some searches, I stumbled upon something about Peyronie's Disease, which I had never heard of before. Once I read that it can be caused by trauma to the penis, I thought back to that time of my girlfriend and I in August because that's the only "trauma" I could think of that could have occurred. I started thinking that maybe I had this.

But, I kind of just forgot about it because I had other things going on and thought maybe it wasn't such a big deal anyway. I figured, "the thing still works and, who knows, maybe I've always been like this". However, now in December, I have to say that my penis looks more curved than I can ever remember it being. In fact, it's not so much a HUGE EXTREME curve or anything (although there is a curve), but more like the thing just points or twists or tilts to the left, erect and non erect. But when it is erect, it's at about a 50 degree angle or so the left and won't stand up..sticks out.

As I mentioned, I couldn't totally remember what it looked like before, and I don't think I've ever been totally straight down there, but I'm pretty sure it had never been as extreme as this. Plus, if I use the tip of my finger, I can feel a a sort of "scaley" type formation on the left side, which isn't present on the right (or at least nowhere as bad). Not sure if this is just a normal part of the penis or not, but it still alarms me.

So, I figured it might be time to get it checked out since it's been about 4 months since the incident. But I'm not sure what I should do. What do I tell them when making the appointment? Do I need a referral from my primary doctor to visit the urologist? Will they be able to tell me for sure if I have it in one visit? Being fairly young, I'm just not fully familiar with how this kind of stuff works. And it's not like this is something I want to talk with my family about, so I feel comfortable posting here.

I just need some piece of mind. And I'd like to think that if it IS Peyronie's, something can be done to help me straighten it out. I see a lot of people on here seek treatment for pain, but I'm not really experiencing any pain. I just want to be straighter down there because I think there has been a change. Sorry if there has been a little too much information in here. 

Thanks

[Tim468]

Dear "I hate Peyronies Disease"

So do we...

The downward angulation is said to be the hardest to surgically fix. My recommendation is to see a urologist to get an opinion, but seriously consider seeing one of the "best" surgeons available. That translates, simply, into seeing a surgeon with good hands who does good work. Those who do research may be very good (and usually are) but for surgery, you need someone who has done many, many surgeries.

Please ask you urologist (if he recommends surgery) how many surgeries he has done on downward angled penises (peni?) and ask him if there are any surgeons who stand out as "best" in his mind for doing such a rarely done repair. See what he says.

Tim

[chiguy]

Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

A good surgeon can fix this problem, but first you need to make sure you have peyronie's. If it is indeed a congenital curvature, meaning you were born with it, a surgeon can fix it by plication. Plication is a procedure by where they will make the longer side (in this case the bottom) equal to the length of the short side.

If it is indeed Peyronie's, a doctor may do excision of the plaque and grafting.

The most important thing to do now is see a urologist, get a doppler ultrasound to check for plaque, and see if it is peyronie's.

[skunkworks]

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

You have had Peyronie's since 14? Was it caused by an injury that you know of?

Have you been diagnosed by a doctor who is familiar with Peyronie's?

Is your erection functional? ie/ can you achieve penetration?

[cowboyfood]

I had not visited this website in at least six months, but Dr. Gelbard has acknowledged and suggested many of the treatments (and timing of them) that are strongly endorsed on our forum over this time period (VED - even gives a plug for the Augusta Med. Device, Pentox, Viagra-like med).

http://www.peyronies.org/pages/forum.htm

CF

[I_H8_PD]

Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

[ComeBacKid]

The last time I was on pentox I had heavy alchol intake for 9 days straight  while on pentox, I was at a business training with a bunch of hooligans, did it kill me? No , it won't hurt you as far as I know.  Is alcohol good for peyronies?  Not at all.  I don't drink at all really anymore, maybe for special holidays I'll have some wine.  Heavly alcohol use can lead to liver fibrosis, and I noticed my penis worsened at points in my life when I had heavy alcohol intake.  I would avoid it all costs if it were me.  If you do choose to drink, at the end of the night when your "sobering" up you could drink a few glasses of water to help soften the dehydration blow, 3-4 8oz glasses of water.

Comebackid

[Skjaldborg]

BentYoung,

When I had my appointment with Dr. Lue, his assistant Dr. Schindel discussed my lifestyle habits including my alcohol intake. I have about 7-8 drinks per week (spread out over the week), an amount which Dr. Schindel found completely acceptable given my age and fitness. He did not mention any interactions with Pentox and in my own research I have found nothing mentioning alcohol interactions with pentox. Nonetheless, 4-5 drinks, and let's be honest, that number is probably higher, it was for me when I was in college , is a lot of alcohol at once. Cutting down wouldn't be a bad idea and maybe limiting the drinking weekends to 1-2 weekends per month is a good way to start. It's ok to drink responsibly and blow off steam every once in awhile, but make sure you "earn" you drinks by eating right and exercising the rest of the time.

The only drug I can find listed as dangerous with pentox is sodium thiopental, a drug used as a general anesthetic. If you will be having any surgery (including dental or oral surgery), let them know if you are using pentox. I don't know if sodium thiopental is used commonly in the US, but it is listed as an essential drug for the World Health Organization so be mindful of that if you receive medical care while living or traveling in a country other than the United States.

-Skjald

[BentYoung]

Random question,

Being a 24 year old still in college, I enjoy normal drinking for my age (weekends 4-5 drinks) - I forgot to ask Dr. Lue about alcohol's interaction with Pentox - I realize that drinking makes everything worse, but that said, does anyone know if these drugs interact or what I should look out for when drinking?

Thanks

[ComeBacKid]

One thing we are noticing on this forum is there seems to be some kind of a link between lack of erections and peyronies.  Whether its men who had prostate surgery to remove cancer, or bladder surgery to remove cancer, and didn't get any erections, then ended up with peyronies disease.  Anything that causes ED or partial ED could aid in the developement of peyronies disease.

Comebackid

[GaryNC]

Have you had your testosterone level checked?  I am 53 now and have been using the rub on your stomach supplemnt for years now.  Do you still have any hair on your legs?  My leg hair grew back when my hormone level was increased

[chiguy]

I have done some preliminary searching about the link between propecia and Peyronie's. A lot of younger members seem to have taken propecia at some point and then developed the disease. I myself have taken propecia for 6 years. I googled "propecia peyronie's" and some stuff showed up. A lot of people are convinced that propecia may assist in the development of Peyronie's.

I will ask the doctor about this when I go see him to gauge his response. Sometimes propecia can cause erectile dysfunction (according to the FDA), but there is no mention of Peyronie's on their website.

[George999]

Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories? 

Brent,  Fred and I am both in the same or similar situation as you are.  My theory is a bit different than yours.  I am thinking that Peyronie's itself is part of a broader inflammatory syndrome that affects the whole body.  In some cases the only effect is Peyronie's.  In other cases it includes other things such as, in our cases, chronic urethritis or inflammation of the urethra.  In my case I have had extensive studies done which have found no infection, but have found microscopic bits of tissue exhibiting an ongoing inflammatory process in the urinary tract.  - George

[BentYoung]

Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories? 

[chiguy]

Hey Jackp,

For some reason my PMs aren't showing in my outbox so I am not sure if you will get them. Thanks again for all the help.

I have an appointment with the urologist for a followup in less than 2 months. Do you think it is beneficial to wait to see him prior to ordering a VED? He sees a lot of Peyronie's patients and doesn't rush anyone out of the office, so I trust him as a good doctor.

What is the difference between the one and three cylinder VED devices?

I have full insurance so maybe if I get it thru his office the insurer will pay.

Thanks

[jackp]

chiguy

The VED therapy I recommended is not for sex it is to keep your penis healthy, help reduce curve and prevent loss of penile size.

Like I said before the number one complaint of men with peyronies is loss of penile size. You do not want to wake up one morning and wonder where did 1 1/2 inches of my penis go.

The 3 cylinder protocol is recommended but I already had a Rx single cylinder. Old Man worked with me and worked up a therapy. I have it posted on the VED board under Single Cylinder VED Therapy.

You can see how the VED helped me by going to My History, a link is posted at the bottom of this post.

The therapy takes time to work. 3 months of more so just be patient.

Any questions do not hesitate to ask

Jackp

[chiguy]

Thank you Jackp.

Would it be safe to assume that my plaque has not yet calcified? Sometimes it feels hard, yet other days I can feel it, but it is not very hard to the touch.

I will look into the VED, though I am under the impression that it is best used for people that do not get active use of their genitals or already have experienced erectile dysfunction?

[jackp]

chiguy

I will try to answer some of your questions. First I believe in vitamin E it thins the blood there fore you get better blood flow to the penis.

It usually takes peyronies 18 months to stabilize. During that time you need to start VED therapy. Go to the VED board and do some research. The goal is to keep the penis healthy and keep from loosing penile size. The most common complaint with peyronies is loss of size, length and girth. The VED is the best therapy for that.

As for pain, I did not have pain with my peyronies, I took 800mg of ibuprofen twice a day for arthritis, so that may be a reason. Other pain killers will block feelings to the glans and make erections and ejaculation more difficult.

You will know when the plaque has calcified when it turns hard.

Like I said at this point the Vitiaman E and proper VED therapy is your best bet.

Jackp

[chiguy]

I have monitered the forum for a month or so and finally decided to join. I know there are some knowledgeable folks on here. To give you all a little bit of information:

I am 24 years old. One morning I woke up and had significant pain in my groin and was unable to get an erection. I also experieced browning on my shaft. This continued for 3 weeks. I went to a urologist who said to wait and see. This was March 2009.

Fast forward two months: The pain was present only in erections, which had begun to curve (I always had a slight curve). I also felt a tightness in my erection. The doctor again said to wait and see, but gave me motrin for inflammation.

In August 2009, I switched to a different urologist who diagnosed Peyronie's almost immediately after feeling the plaque. He prescribed 1600 mg of vitamin E, 20 days of Prednisone, and cortisone (for the browning). By this point, the erection was at a 35-40 degree angle upward with a significant leftward rotation on the head. The pain was cut in half due to the prednisone. My doctor it appears is very good. He does not want me to pursue surgery at this point.

I still experience some pain in my erection and it appears the curve has not significantly changed since August. The browning all over the bottom 2/3 of the shaft has not gone away, but the doctor had me discontinue the Cortizone. He also gave me alleve, but it doesn't do much for the pain on erection some of the time.

I have no problem getting or maintaining an erection.

Now for the questions:

1. Is there any reason why on some days I experience pain with erection (and the plaque is hard as a rock) while other days I do not experience as much pain (plaque is present but not as hard)?

2. The penis doesn't look that odd curved upward, but the leftward rotation is weird looking and makes it hard to function. Have any of you ever just had a rotation at the head fixed as opposed to the entire penis?

3. It feels like I have a lot of plaque on the dorsal side, but it doesn't curve upwards as bad as others who have this disease yet say they only have a little plaque. Any thoughts on this?

4. In my condition, what other medications could I press my doctor for to get rid of the pain and stabilize (if I am already not stabilized)?

5. How do you tell if the plaque begins to calcify? (my biggest concern)

Thanks

[despise]

When I get a erection it always points in the same direction. I don't get erections when I'm taking a bath but I guess you could say it gets semi erect because its not completely flacid either. Hope I'm at least somewhat helping =P

[newguy]

despise - I'll try to state the question in a different way. When you get a very hard erection does your penis always point in the same direction? I'm trying to eliminate the possibility that you are talking about the movements of a semi flacid penis. All that matters is what your penis is like in an erect state.

[despise]

At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it .


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined? 

Oh and I aplogise once again for not answering your question fully. I am only taking vitamin E 400, Vitamin d3 and sometimes fish oil. I stopped taking Vitamin E 400 and noticed that my peyronies got tighter and worse. So I immediately got back on it. Would you recommend me getting on any other supplements? I would say my pain has subsided but I still do feel pain on the left where my peyronies is located. So basically its not completely gone but its not as bad.

[despise]

Sorry about that newguy =P remember im young so its hard for me to explain things as well as you guys but I am trying. Well first ill explain how having a bath was when I first got peyronies. My penis would somewhat get a erection but not quite. I guess you could say it got partially but it never got really hard, just got a little larger than normal by being filled with blood. Now it seems to be less large and no, no erection. While I was laying down waiting for the water in the tub, my penis was touching my left leg. When my penis was finally submerged in the hot water it was to the left, diagonaly. It did not take more than 15 minutes for it to move to the right, very odd I know. It felt as if it was relaxing the plaque and somewhat stretching it. Then it went into the middle and then finally back to the left. So the hot water definitely did something and this was actually earlier today =P I feel no difference now but I am convinced the hot water did something positive so I am going to try to take a hot bath everyday.

[newguy]

At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it .


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined? 

[despise]

Has anyone here utilized heat therapy and if so, duration, daily, heat pads, jazuzzi, bath tub, etc? Any good results? Thanks (and thanks for the response to my last question)

The only heat thereapy I have done is a hot bath and it does seem to help it relax. I tend to get very hot and dizzy so I can't last long in a hot bath but let me explain what happened. At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

[despise]

I have gave my urologist a sperm sample and the test results came back normal. At the time I was drinking a lot of alcohol and caffeine so im assuming that was the reason I was having trouble with my sperm. I think I have been a little more paranoid then I should be so that was the reason of my concern. However is there a possiblity I could have something else going on? I would feel pain sometimes after ejaculating but also other times it seemed to be normal, again this leads me to believe it was the joose alcoholic beverage I was abusing with alcohol, caffeine, ginsing, and taunsine.

The ejaculation will hurt and the sperm is either yellow and brown or bright yellow.

Despise,

Beyond ANY doubt, this has NOTHING to do with Peyronies Disease.  Have you had a digital rectal exam of the prostate and a PSA test?  If not, get to a urologist and get one now and go over your list of symptoms.  Some of your other symptoms also seem unassociated with Peyronies Disease but no aspect of Peyronies Disease can discolor ejaculate.  You could have anything from prostatitis to prostate cancer to several other issues going on and it is not an issue for self-diagnoses or internet diagnosis.

[newguy]

Indeed Lue reported "regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline". Levine states that pentox (In animals) "has an anti-scarring effect particularly when the scar is just beginning to form". I do think that the effectiveness is maximised by taking it as early as possible. The sooner the better. Perhaps I'm being a bit too pessimistic and taking too many of my experiences from here, rather than what the professionals claim to have seen. Lue's words are helpful in getting urologists to prescibe pentox, but very low an actual detail. I wish he's provide more information relating to success stories that he has seen.

[Skjaldborg]

I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much).

In Lue's study, Pentox was effective in reducing some calcified plaque in a patient who was in the inactive phase. The patient continued to see beneficial effect after taking pentox for 2 years, reporting better erectile function without erectogenic medications. The nature of the drug as a blood thinner that increases tissue oxygen levels probably encourages some healing at every stage of the disease. I'm with George999 that Ohno's current doctor is a dope, just like most general physicians (and some uros) are when it comes to Peyronie's. Remember, it's because of ignorant and reluctant doctors like this that there is no cure for Peyronie's. Lay blame where blame is due.

-Skjald

[newguy]

I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much). I can see the logic is using it to avoid or reverse calcification, or as a preventative meausure (in case of further injury), so I wouldn't rule out use completely, but I wouldn't expect changes in curvature to occur after the condition is stable, if pentox is being used. At that stage I see the VED as a good option. Just my view though.