Our Histories - Meet the Forum Members - ARCHIVE

[GS]

Age-59

Age at onset of Peyronies Disease- I got it for my 58th birthday present...lucky me.

First Systems- soreness after intercourse that continued to get worse over time and then, all of a sudden, a bent penis.

My Progression- pain does not seem to be a issue now, but we don't have nearly as much actual intercourse now.  My wife is very understanding and our sexual relationship is still very good...we just have a lot more of what I used to call foreplay now and a lot less intercourse.

Where I am now/ Future plans-Presently I am taking all the supplements and using the VED.  I am only in my 6th week of VED therapy and I am very hopeful it will help me get better or at least stay the same.  My curve is about 50 degrees, but we can still accomplish penetration.  My main fear is to get worse; if that happens, I guess I will look into surgery...but, it will have to be my only option.  I will continue to use the forum, searching for the next best thing and hoping for a cure.  You guys are "the best", thanks for setting up The Society.  I can only imagine how much work you have put into it.

GS in Middle America

[Blade]

Age – 51

Age at onset of Peyronie’s Disease – 50 (Feb 2009)

First Symptoms - 1 year ago I noticed a painful erection with a pea-sized lump on the left side of my penis behind the glan. This went on for about a month. I was puzzled because I had not noticed any traumatic incident with my wife.

I have always had a fairly nice physic as I am told and as I have gotten older wanted to keep looking fit. I have always been keenly aware of any changes in my body. So I started to take supplements and workout fairly frequent. One of the supplements I took was B6 vitamin, it has diuretic qualities and caused me to go to the bathroom frequently. There were times when I had to go in a bottle in the car when stuck in traffic. Other times I would squeeze my unit ( this I use to do as a teenager) until I got to a place where I could go without publically embarrassing myself. On two occasions I remember pain and blood on urination after this squeezing event. This would last for 2-3 days. A few months later the symptoms started. This is the only traumatic incidents I can recall.

My Progression - The pea sized lump has now progressed into a large U shaped swathe of plaque that covers the top and side 1/3 of my penis ending near or just in the glan (head). It seems to be deep as opposed to just under the skin. The initial pea size is the left edge of plaque and still the easiest felt.

I now have a left twist of the shaft (bottom of penis on the right side), about a 20 degree curve to the left, an upward bend of 30 degrees and a hourglass shape at the glan.  I am about an inch shorter so far. All this has occurred in a 10 month span.

On my visit to the doctor; he examined my private area for about 10 sec. and said “yep it’s Peyronie’s”. I had already done my research on the internet and PDS and told him what I thought I had. He had seen a few cases before. He only prescribed 400 mg vitamin E once a day. However, he is open-minded and willing to listen to my suggestions.

Psychologically, it’s a royal pain. As someone who had sex 4-5 times a week, it has been a real emotional challenge. For a while, I could not get an erection. I tend to believe that was mostly mental. My wife has been very supportive taking an interest in what drugs I’m taking, exercises, and even the amount  and kind of sex we have. This has made it easier for me to deal with. Now the erections are back but not as hard as the “ BLADE “ I use to have before all this.

Where I am today / Future plans – Currently taking the PAV cocktail, (prescription not required for these drugs here) Oil massages, Heat therapy and working on getting a VED. (May have to wait until I visit home on vacation)  I will work with topical potions, packs and other forms of direct treatments.

If the above does not work then maybe inquire about LeRiche Technique in Europe as I am already near that part of the world. The upward bend is my primary concern now.

[Old Man]

hell bent (Jim)

OK, you have come to a place where you can rely on the members for help. Sorry to hear that you have joined the ranks of the "Peyronies Disease Family". It is a very devastating disease/disorder for which the answer for a treatment or therapy seems to escape a sure thing. Each and every case of Peyronies Disease is totally differently from any other, so each has to be handled differently. What works for one does not always work for another, etc.

If you are planning a visit to Dr. Levine in Chicago, you are going to one of the leading Peyronies Disease experts that this forum knows about. He has treated a number of guys of this forum and hopefully some of them will see your post and give you some insight on the whys and wherefores of what you need to do before seeing Dr. Levine.

In the meantime, read as many of the topics and threads on the boards of the main forum. When you log in to the home page, scroll down the page and select a board that looks interesting to you, click on it and open it. There will be many posts from the members pertaining to that particular subject. Read as many posts on the boards/threads/topics as you have time for. There is much information to be reaped in these.

Feel free to ask any and all questions that you might have pertaining to your particular case.

Old Man

[hell bent]

I'm definitely new and have read many of the posts. I have lots of questions. I'm not familiar how to post on this site, reply... so bear with me until I learn the ropes.

Name is Jim.
brief history is that I noticed a rigid line on the top of my shaft, just under the head about 9 months ago. Slight pain upon erection about 6 months ago. Then suddenly, one night, I noticed a substantial curve, probably 30 to 40 degrees and pain increased during erection. Slight pain while flaccid and riding the bike (turtle effect). I heard also cycling could cause the onset of Peyronies Disease... micro traumas overtime? Any thoughts there.

I live in the Chicago area. I contacted a Uroligist, young guy who started me on potaba and vitamin e protocol. He's heard of Dr Levine and mentioned the VED which I'm going to push when I see him in a couple of weeks. Also the L-arginine & Pentox. Is it beneficial for injections or should just focus on VED, L-Arginine, Pentox... and should I continue on Potaba. I read on Dr. Levines's site that he does not prescribe Potaba. it's expensive and literally a pain in gut to take 4 times daily.
Thank God i found you guys. I'm a member of two more support groups for other issues which i rely heavily on. I also believe in giving back what was freely given to me. That's what its all about.

Also does anybody here have an autoimmune disease?  I'm being tested for some issues and I heard loose connections/theories about Peyronies Disease there.
I'll hang up now and listen for my answer.
Thank You
 
 

[GaryNC]

I am 53 years old as of 2009

I started to have symptoms of peyronies when I was about age 20. I must admit that I started my own symptoms by being too rough with my favorite toy.  I started to notice that my penis was starting to bend to the right and I had developed some plaques in a couple spots that were moderately painful when I had en erection.

I was a shy man and inexperienced with sex and relationships so this really horrified me that I might get so bad that I might not ever have sex with a girl, or children.

The only comforting thing a urologist had to offer me was that the vagina was very accomidating.
I did start vitamin E but not sure if he suggested it or that I just decided to take it myself.

The plaques would appear and be painful then seem to clear up then another would come for a year or so.  In the end I had destinctive right bend.

I did marry and have 4 children.  Intercourse was only a little akward for me, and the doctor was right.  (afterall babies come out of there)

I hope I can give some comfort to you young single guys.  I was really depressed for a long time because I did not know where this disease was taking me.  I was frightened about the prospect of being single forever.  I already had self asteem problems and grew up in a crazy house and my social skills were lacking too.

In my frustration I did another stupid thing.  I always had very firm erections and having peyronies did not change that, but just hurt a little now and then.  I tried to bend my penis back and stretch it thinking that might make a difference.  I got too rough again and one day heard this light pop sound.  Now I had a little bump right in the middle but this one was a pocket of blood.  Something had torn!  After several years after intercourse or upon waking up with an espcially hard erection I felt some pain again from time to time.  This little tear was spreading and making the center of my penis bulge.

I noticed some pain one day and discovered another plaque after years of no change.  After intercourse or after waking up I would feel some pain.  I discovered that I had small residual erections of high pressure blood that was not draining out.  I found that I could massage that area and stretch it some and this would completely resolve that problem.  Was I getting an injury while sleeping with hard erections? Was this the cause of my new plaque? 

As I have gotten older my erections have not been so intense.  My erection is bendable now without any discomfort.  Erections are slower now with me and usually not spontantous. (something I miss) I have not noticed any increase or improvement really over the years.  I am pretty lucky and have finally learned that the penis is not indestructable and have taken it easy on my friend.

My biggest sexual problem now is that my wife and I just weigh too much which presents another delima.  The more I weigh the shorter my penis seems to be.  The missionary position is out and my bend to the right only leaves one position left.

I take hormone replacement daily now.  If you have no hair on your legs you probably have a hormone deficency.  The hair on my legs grew back.  There are advantages of a normal testosterone level, better mood, less depression, improved sexual function and drive, weight control for some (not me) and retention of muscle and strength. A proper hormone leverl might have some preserving effect over the penis.

Another issue for me.  After our 4th child my wife really went nuts with depression.  I had just returned from desert storm with the national guard and realized I wanted a divorce. Relationships with women had always been hard for me and my wife had actually turned me off to women.  As I said before I grew up in a crazy house and had a father that was virtualy absent due to mental illness.  I have always had some same sex attraction and this was taking me over.  Some of my last 15 years have been spent with male partners who have been very understanding of my peyronies.

My wife and I are finally back together but noting is the same.  I have some issues with intimatacy now.  It is difficult to get an erection for intercourse now due im part to getting older, and the memory of my wife being so cruel to me.  I can masterbate with no problems though

[jimifan]

Age - 39 (in Aug 2009)

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -  Onset at age 37, nearly two years ago Nov. 2007; formally diagnosed June 2009.

Very First Symptoms - Sudden onset; woke with a painful morning erection that jolted me awake.  My penis was bent upward and hurt like hell.  I thought it was some temporary injury or glitch in the system; thought it would work itself out...

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I was convinced I'd suffered a fractured penis, as a day or two before waking with that unforgettable erection, my wife was on top and we had a bit of a missed entry.  It hurt; I noticed it; she noticed it; we finished what we'd started and never thought more of it.  So when I woke with that erection, I figured I'd fractured my penis.  I'd heard of that.  I had never heard of Peyronies.  I didn't go to the doctor then because I figured it would just heal...give it time, ya know.  Well, the pain during erections lasted for over a year, but got better between 12 and 18 months.  However, my penis was getting noticeably smaller while erect, which really confused me.  I've lost close to two inches in length to this point.  Also, about the time the pain started to subside, the quality of my erections began to deteriorate.  I could get an erection, but not sustain one for long, nor has it been as solid an erection as it ever was.  During the initial months of onset, I clearly remember having more solid erections, EXCEPT at the site if the curve, where I would have to hold with it my hand in order to gain entry and then hope for the best.  Now, even when using Cialis, my erections are just not what they should be (what they were; what I remember an erection being).

My difficulty with sex is what prompted me to visit a urologist.  I expected to go in there and explain that I’d suffered a penis fracture, he’d shake his finger at me for waiting so long to come in, and then he’d fix it.  Well, it didn’t quite go like that.  He listened to me explain why I thought I had a penal fracture and then asked, “Is your bend upward?”  “Have you noticed your erections aren’t as long as they once were?”  Then he told me he was pretty sure I had Peyronies Disease, but he’d have to see it to confirm it.  He asked me to drop ‘em, he grabbed my penis with both hands, and began feeling for plaque.  It took him about 0.25 seconds to ask, “Do you feel that?” as he applied pressure to the plaque on the top of my shaft.  It hurt, a familiar pain, the same pain in the same place as when I’m erect.  He explained about the plaque, Peyronies Disease, and treatment options, which he categorized as non-invasive and invasive.  I was shocked.  What in the hell is Peyronies Disease?  He was honest saying no treatment is guaranteed to work. He wanted me to try the TV from Wedgewood Pharmacy, so I did (I am).  He wants to see me after three months of application to see how I’m doing.  AND he gave me a prescription for Cialis.  Neither is working as well as I’d hoped, if at all.

Psychologically, this disease sucks.  It leaves you as an outwardly normal citizen, life by the tail, what could be wrong, while wreaking havoc on the thing that makes us a “man.”  I feel blessed that I have my health (otherwise), my family, job, friends, etc.  Sometimes I even feel guilty for being upset about having Peyronies when I consider those less fortunate than myself.  Then there are times when I’m very alone, simply because it’s difficult (might as well be impossible) to talk about this with others.  I don’t feel like I can attend to my wife’s physical needs as the man I used to be.  And to be quite honest, I’m worried that our relationship isn’t built on a strong enough foundation to weather this.  So now I wonder how in the hell I can even entertain the thought of being single and entering new relationships while suffering from Peyronies and ED.  Someone else indicated that the psychological effects of Peyronies are the worse.  I could not agree more.  It’s been extremely difficult emotionally. 

Where I am today, future plans – Now I’m just applying the TV (starting the second month) and hoping I see signs of improvement.  I’m interested in getting a vacuum pump to see how that works. 

[Hunter]

Age - 63 

Age at onset of Peyronies Disease - 62

First Symptoms – Six months ago I moderately fractured my penis as a result of accidentally squeezing myself while asleep. No obvious deformity at first, just intense pain from a torn tunica albuginea. I knew immediately what had happened but decided not to seek emergency intervention when I saw the frightening surgical repair photos on the internet. Also took some bad advice from a popular medical journalist who said there was growing evidence that a fractured penis would repair itself without serious side effects. Wrong! Advise immediate treatment. I waited a month before being seen by first urologist.

Disease progression – Difficult at first to differentiate between trauma from original injury and contraction of scarification from my body’s attempt to heal itself. Nocturnal erections were (and still are) very painful and I’ve lost a lot of sleep as a result of being constantly vigilant against having them. Urination was also quite painful with severe burning sensations early on but an adequate flow. The pain seemed to be concentrated first one place then another over ensuing weeks. Progression of the condition is discussed further in the next sections.

Doctors  and Treatments –

Self Treatment:   Because of painful erections I tried banning all thoughts of a sexual nature from my mind, moving into a separate room from my wife to sleep and looking for herbal and pharmaceutical products to reduce my libido. I‘ve taken nutritional supplements for anti-inflammation, sleep, pain, blood thinning (nattokinase), proteolytic enzymes, etc. I’ve also tried hot compresses, baths, salves and ointments. Someday I’ll try to evaluate them on this site.

Urologist # 1:     When examined by first urologist (1 month after injury)there was no obvious scarring so he didn’t think I’d done any lasting damage. However, my pain level told a different story. He initially prescribed colchicine to prevent scarring but I never filled it after reading about it’s side effects. I already have a compromised liver and couldn’t take the chance. Was given a 10 day prescription of Valium to help me sleep through the night. This was immensely helpful for sleep and erection reduction but doctor refused to refill it because he could not imagine why I’d still be having problems after 10 days. The dismissive attitude this doctor took was upsetting to say the least. He was very slow in making the necessary referral to a competent Peyronies Disease specialist and never did give a Rx for pain despite my practically begging. This was a very negative experience.

Urologist # 2:     At the three month mark I finally got in to see one of the better  specialists in Peyronies Disease. He couldn’t have been more caring; a very positive experience. He made a positive ID of Peyronies and prescribed Trental (pentoxifylline). When I got home and read more about this drug I realized I should’ve asked for something different as I have a history of arrhythmias and have had some scary moments due to irregular heartbeat while taking theophylline for asthma. Pentox is contraindicated for those reacting to theophylline. So to date (six months out) I have still taken nothing for prevention of scarring except some Vit. E, some hot Castor Oil compresses and some herbal supplements. Not unexpectedly, I now have some significant scarring along the complete (upperside) length of my penis.

Psychological Stages –

Stage 1:     Frightened at first that I might need to have the dreaded degloving surgery for my fractured penis. Then very hopeful for awhile that I might’ve escaped serious consequences. Too hopeful.

Stage 2:     Frustration with uncaring attitude of first urologist and his dismissive attitude about the level of pain I was in and serious toll the lack of effective sleep was taking on every aspect of my life. I was starting to think I’d fallen through the cracks of the medical establishment and wasn’t ever going to be taken seriously or get the help I needed. I joined another Peyronies forum and posted a call for advice but never heard from anyone. Discouragement getting deeper.

Stage 3:     Quiet desperation when I couldn’t explain to any of my friends or family why I could no longer go out for exercise with them, or even socialize. Only my wife knew what I was going through and my down moods were taking a serious toll on her patience and peace of mind. When I tried to have a discussion about this with one friend he thought it was the funniest thing he’d ever heard of, then started moralizing. Lesson learned: keep this to myself at all costs.

Stage 4:     Acceptance of the fact that this wasn’t easily going away and that I’d need to learn everything I could about it and learn to be a little philosophical as well. I’ve endured lots of other things in my life and so I knew I could adapt to the pain if I had to. I’d already been through a lifetime of asthma, extreme chemical sensitivity from a pesticide poisoning in my mid 30’s, shingles, frozen shoulder, fibromyalgia, some Dupytrens and years of headaches from severe sinusitis. This was just one more damned thing to learn how to deal with. I later learned that some of these conditions have some commonality, especially the fibrotic ones. As this dawned on me I began to see that progress made in one area might have some positive impact on other areas as well. In that regard I tried to think of Peyronies as a condition that had something positive to teach me about inflammation, metabolic processes, attitude, etc. I’ve decided to work with it instead of resenting it.

Observable changes – The scarring is still progressing, urinating is getting more difficult and the pain is not diminishing noticeably. I’ve lost a good deal of length, noticed some thickening at the bottom, indentation in the middle and intermittent bruising at the head following nocturnal erections. The curvature is noticeably increasing upward when erections occur and I think I’m still in for a bit of a rough ride. When I finally find the right combination of meds, supplements and self-care, especially non-injurious exercise, I hope to stabilize things.

Where I am today/future plans – I’m trying to learn all I can, especially about inflammation and auto-immune problems to which I seem to be genetically predisposed. I expect to make some slow but steady progress as I learn. I go back for my second appointment with the “good” Doc in a few weeks and will figure out how best to manage my situation then.

I just want to say I greatly appreciate the solid foundation of knowledge and wisdom assembled by the combined years of experience of this forum’s members. Thanks for offering a place where I can talk openly about this, be heard with understanding and compassion and learn from your sharing of all of your valuable life lessons.

[JPRHenry]

Age - 56

Age at onset of Peyronies Disease / or I have had Peyronies Disease for 1.25 Years - My peyronies literally appeared overnight just a little of a year ago at age 55.

Very First Symptoms -
Other than about a 40-45 degree curvature, upward--appearing out of no where, there were no forewarning symptoms or problematic concerns.My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

Initially, for possibly the first six months there was not what I would term "pain" but a continual sensation that something physically was occuring.    Approximately 6 months ago I made a visit to my urologist.   Although I have known him for years and weighing in for myself the gravity of this "situation" I was stunned at his cavalier attitude and immediate and only suggestion just to call when I was ready and they would get me on the surgery schedule.   

There was no discussion of any potential alternatives.   No discussion of pro vs. con.  No discussion of consequences.   Again, I was shocked that from start to finish, this appointment and exchange probably took less than 15 minutes max.   For an issue that has taken a physical, sexual, mental and emotional toll on me,… this was simply not acceptable.

Where I am today, future plans - After going online and doing some initial research, I learned of Auxilium’s Xiaflex.  I did call Auxilium, and actually got a return call from one of the individuals directly involved.  I was duly impressed.   At that individuals guidance and encouragement, I have made contact with Dr. Levines office and am hopeful to be considered as a candidate for that study.  I continue to hear positive comments regarding this study and can only hope it is all true.

I did arrange a consultation with Dr. Levine via telephone in March or April of this year.  The conversation was the opposite of my previous in office visit with my hometown urologist. 

Dr. Levine listened, was empathetic, supportive and gave me reason to be optimistic.   The proverbial difference of night and day---a breath of fresh air.  Per Dr. Levine,  I am taking as prescribed, L-Arginine and Pentoxifilline and have considered the traction device as he mentioned.  Any personal comments and suggestions would be most appreciated.

In the meantime I am very, very happy to have found this site and am grateful for the support I have had thus far, and for those of you that have taken the time to actually talk with me.   A price tag cannot be placed on the value of your understanding and encouragement.   

Thank you.



UPDATE: In the fall of 2008, I visitied with Dr. Levine as a candidate for the Xiaflex study.  I did not meet the required criteria.  It was determined my plaque/scarring had begun to calcify.   After much consideration I made the the final decision to proceed with surgery, and then applying for prior approval through my insurance company, rejection, appeals process and finally, approval--my surgery for excision and grafting was scheduled for 9am, Monday, 3/9/2009.

On 3/9 I did have the proceedure done.  Two weeks later on the 24th., of March, I flew up and back to Chicago for my 2 week post. op. check.  Everything looks well, Dr. Levine was very pleased with the results. Next Friday will be one month--I continue to mend.  The change(s)  from week 1 to 2 was amazing.  Week 3 as well.  At week 6,. we will move forward into seeing how things are "operatively".   With some anxiety, I look forward to this opportunity.   I know from initial observation, where I had once had a curvature in excess of 60 degrees, it is now gone.  Erections are good, firm , rigid and should continue to improve more as the nerves continue to mend.  Sensitivity has remained in tact.

In late June, I have another visit scheduled with Dr. Levine.  I see no reason to believe why everything will not continue to progress, this story will have a happy ending and when I speak of Peyronies, it will be used in the past tense.

Having said all of this, I will not be leaving the Peyronies Forum.  This site has been literally a "lifeline".  I've "met" several individuals that have been instrumental and a "guiding light" for me.   I was fortunate that early on, I "met" a fellow Dr. Levine patient, who had blazed the trail before me and has been nothing less than a mentor--and take this opportunity to publically say "thank you".

It's a day by day process, but I can say without reservation it was the right decision for me.  I liken the past two years to pulling a piece of string,.. Beginning with Googling "Peyronies, treatments",.. leading me to Auxillium/Xiaflex, a phone call to Auxillium, referring me to Dr. Levine, The Peyronies Forum, etc.,  As they say "The Rest is History".  A special thank you to HAWK and all the members who have made, and keep this site viable and helpful tool to share and support all people and their families dealing with this  physically, mentally and emotionally taxing  and devastating (I hate referring to it as a "disease") "condition".  I have said, if we all were asked to write a chapter for a book on Peyronies,  all of our "chapters" would probably sound eerily the same---and they would be chapters of frustration and sadness.   Regardless of the individual and different therapies we elect to choose, the Peyronies Forum is the most valuable sharing and sounding board I have ever encountered. My updated post is twofold,...  One it to share my expereince with all of you, but most of all to reinforce what a wonderful site The Peyronies Forum is.  Simply the best.  I thank all of you again  for your unselfish support and will do my best to  return that favor when called upon. 

JP

[Mr. Confused]

Age - 52

Very First Symptoms - Almost an overnight bending upwards of my penis (Nov./08). Painful erection and a rather noticeable shortening of my erection by about roughly an inch. Perhaps a little more? In retrospect I have had trouble getting and maintaining full erections for the best part of two years. I had put this down to my Type II diabetes. I was diagnosed in summer 2005. However, my blood sugars have been OK since then and I am not on any medication. Since about that time I have also had repeated bouts of prostatitis. I think it's now gone to the "chronic" stage as antibiotics no longer seem to work. I have also had - rather interestingly re Peyronies Disease - bouts of plantar fasciitis. I made a visit to my GP in late December 2008 re the ongoing prostatitis. I had looked up my other symptoms on the net and very quickly came to the the rather unpalatable conclusion    that it was Peyronies Disease! However,as I had noticed the bending etc.in the penis from about November 2008 I thought I should also mention this to the doc. Here in the UK GP visits are short and sweet. He briefly looked at my prostate and penis. He seemed to to agree with my diagnosis and made an appointment with a local Urologist. Again, here in the UK you have to referred to a specialist by your GP. As of today I have heard nothing from the local hospital re my visit. I was told it could take up to 18 weeks. Not so great.

Progression. Well, it's not so easy to say. The pain is not unbearably bad. Although, it can be painful when even flaccid. It comes and goes. Added to the pain of the prostatisis and the pain of an erection - well, needless to say all sexual activity is rather unpleasant. Ironically, you are "advised" with prostatitis to "evacuate" the prostate as often as possible. How are you supposed to do this with a painful erection??? The doctor mumbled something about an ""Nesbit technique"" operation. Quite frankly I simply do not like the the look or sound of this at all! However, until I actually see a Urologist I am drifting somewhat and thoroughly confused. Psychologically, it's a real blow. The diagnosis of Type II diabetes back in 2005 plus a major bereavement in 2008 and chronic/often painful prostatisis ....well this is the very last thing I needed. I really need some answers and some advice.

Where I am? Well limbo. Perhaps I'm also in a little denial. I am hoping against hope that I will wake up and find that I am one of lucky ones who's penis spontaneously heals itself! Does this really happen? I have tried Vitamin E and have been taking something called Quercetin for the prostatitis. Yes, there are worse things that can happen in life. Having watched a loved one die of cancer I can vouch for that! However, I'm sure I do not have to tell anyone here on this forum that this is problem/disease that goes to the very heart of being a man. I suppose I could live with a bent penis. I still don't have a clue why my penis seems (well is!) smaller! But the painful erections...will this pass? Operation? Does it even work? Would they even consider that option so relatively soon after this all kicked-off (November 2008)? Is there a link with Peyronies Disease and Type II diabetes/prostatitis/plantar fasciitis? So many questions. I know that direct responses to questions are not encouraged here. However, please feel very free to offer advice/help/sympathy elsewhere. Please! Thank goodness for this forum. Mr. Confused.

[alexnden]

Age - 48

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -
46
Very First Symptoms -Painful erections and a noticeable knot inside my penis.  This happened right after I had my first kidney stone, but the doctor said there was not connection.  The scarring seemed to occur within a week. 

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -Right now I have a very slight upward curve right behind the glans.  I hope it doesn't get worse.  I have also noticed significant shortening of the penis, almost 1.5 inches.  At this point in time, no ED problems, except the size issue. 

Most doctors just don't seem to care and tell me there really isn't anything that can be done.

Mentally, this has really caused me to be depressed.   :(I don't talk about it with anyone.

Where I am today, future plans - Today I am trying to use a device called Fastsize which my doctor told me about.  It is suppose to help stretch the scarring, but after 3 weeks, it is just plain uncomfortable to use.  I don't have any plans for the future, but am just checking out the internet to see what other guys withe Peyronies Disease are experiencing.   

[peajay]

Hi arnday, I'm a newbie here and reading your history touched a nerve. (sorry guys I did not mean for this reply to come up here, perhaps some kind moderator will move the first bit to where it should fit? )
The onset symptoms seem to be like mine, and I know psychologically it's bloody hard to take the little guy's betrayal (especially at your age)
All that I can say is that the ancedotal evidence is that the progression from this type of Peyronies Disease seems typically rapid from first appearance> distortion> pain> to just curvature with no pain, or depending on the amount of plaque(s) present it might balance out (I am living proof of this)
In my own case I almost went nuts with grief, the pain was unbearable and I had a new partner. I was very proud of my (almost)8in, I considered it my best feature...now it's only about 4in. with less girth, but retains a perfect shape with less upward curvature than before, best of all no pain. (and you can crack one at the beach and it won't embarrasingly "up pericope" like before)
I honestly can't reccomend alcohol, probably won't help your Peyronies Disease, especially with antidepressants.
Try checking out some guys on gay sites, dicks come in all shapes and sizes (haven't seen a pretty one yet!)
Please hang in there...you're not alone.

[The solver]

I read every single post, phew! Good work one and all.

Age - 36

Age at onset of Peyronies Disease - 35/36 Confirmation 24 November 2008

Very First Symptoms - hardened skin below head, changing shape 30 degrees slope, decrease in size/girth, pain during sex, already had ED symptoms for a year. It was not overnight, but the accumulation of evidence. My self diagnosis was confirmed by the urologist.

My Peyronies Disease progression: at the moment it is analysis stage (thanks to whoever created this website and all those that provide information). I am a type 1 diabetic since 6/7 years and have a couple of other things that dont do quite what they should -e.g. liver/kidneys in addition to pancreas. Keeping an eye out for the, um, eyes...

Treatments (in order): none. The urologist said there is nothing that works and surgery should be delayed for as long as possible

Doctors: Many. GP, diabetes specialist, kidneys specialist, eye specialist, liver specialist. One thing to add, as i've seen on a few other discussion boards, I had an issue with my urethra (the little tube that lets the crap flow out your kidneys and into your urine). It was too thin. They noticed this when they diagnosed me with diabetes type 1 (that is the full blown version when your pancreas doenst produce any insulin). Type 2 is insulin-lite . So I had a catheter put in there to expand the tubes. Effectively I had operations on both my kidneys to make them work better. Nice scars. That was 6 years ago at the same time I was diagnosed with Type 1. So I think it is too long for it to be a factor. However, I have suspicions on kidneys in general in this saga, so I will follow up on that elsewhere.
 
Psychological Stages, observable changes: Good and will remain so. Worse things happen at sea etc. There are lots of people with worse predicaments, including people I know well. I hope we can all share this perspective.

Where I am today, future plans: I dont want to stay on this forum any longer than I have to. There has to be a solution here, hence my user name.

My background. I was in a relationship for around 10 years. That came to an end recently. Have been seeing a new gf who has a lot of sexual energy. Before my long relationship I had what I suppose is a lots of girlfriends/sexual partners (30/40). I was always proud of my little fella and right when I have found someone as highly sexually charged as me again, I could do with him on my side. Or preferably out front and proud. I love sex and normally masturbate 2x per day. My new girlfriend is fairly insatiable. We watch porn together and she teases me about having a bigger member. Obviously I remember when it was 8in rather than 6.5in but just keep my mouth shut. I figure I had it good for a long while so i'll take what I am getting. I get through our sessions with some help from the little pear shaped pill... Cialis. I dont get morning glory any more. It used to be the case that I would only have to think about sex for half a second and there it was, needing attention. A few months back I noticed the pain during intercourse. But with the help of the little pill, I decided to grin and bear it.

I actually got confirmed it was Peyronies Disease when I went to the urologist with my new gf. I went to the urologist as my new gf wanted me to check my balls for a little lump she found during our playtime. That turned out to be nothing. However, I had noticed the lump on my shaft and could see the changing shape and that was the real question for me. In fact I insisted with the lady GP (general practitioner) that she send me as soon as possilble. I had already begun taking Cialis for ED problems for maybe 6 months - while I was still with the ex gf. Now seeing him shrink was a double blow.

The research I did on the net pointed towards Peyronies Disease. The urologist said I was right. He did a test with the ultrascan thing that they use for pregnancies (and livers and kidneys). I'm based in Switzerland and he didnt offer any solutions whatsoever. He basically said that various things had been tried, but none were successful. Nothing. It was as if there was no hope for my very faithful servant. That was a blow. Maybe there is a condition in urologists that make them less sensitive to passing on life changing information. Probably looking at too many other mens bits and bobs as a living. I guess you already gotta be quirky to go into the field. No offence to any urologists here... 

I only told my gf about the results of the lump on the ball which were positive and what she wanted to know about. The other part I kept to myself. I walked out there and I was dejected. I have that feeling only when I have seen doctors and they say words like transplant, blindness, incurable disease. I have those conversations fairly often.

So I want to take this on and defeat it. That's why i'm here. I suspect you will see a lot of me as I will be fairly active gathering evidence and participating in discussions. I'm very grateful to have found you all. However, no disrespect, but I hope our acquaintance is a short lived one.

[Shalomuk]

Age - 28
Age at onset of Peyronies Disease= I think I had it all my life not really sure of onset.


Very First Symptoms-

I lost my virginity at 27 and the girl broke up with me because of this several times. (Same girl)
I have the "Hour glass" and when my penis is not fully erect it bends too much and when it is fullly erect it may hurt the girl when I have it in.
It was hard to aim for her vagina for one and even when I got it in I think it may have hurt her.
Also when the penis is filling up the rest of the penis is large and hard while the skinny part takes time to fill up.  It almost is as wide in girth as
the other parts.


My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

I was just diagnosed today..


Where I am today, future plans -

I just wish that when i am partially erect (7 1/2 inches) that the "hour glass" portion will fill up faster. 
If it was straighter (30-40 degree curvature) it would be easier to maneuver during sex but the most frustrating factor is that it does not harden all the way easily.
I am thinking I will try to minimize sleeping on my belly and prevent trauma. (not sure if that will help)
I will also try to stop masturbating.   I am not sure if that is what caused it.
I really don't know what to do.  I am not a sex maniac but I realize that sex will be important for me to have a healthy relationship in the future.
I will be a pharmacist in a couple of years.

[double eagle]

Hello, first time post, short time lurker.


Age - 38+

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

I was just "diagnosed" October 2008 with Peyronies Disease.

Very First Symptoms -

Sudden onset in June 2008. One day after a sexual interaction, I noticed that the tip of my penis was leaning left. After discussing with my wife, we came to the conclusion that something was "different". From that first observation, the disease progressed rather quickly. By the 2nd week of August 2008, I had gone from a little lean to a severe bend to the left and then came the pain.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

The 2nd week of August 2008, it had surpassed "curious strange" to advance to "something's definitely wrong here". I belong to another Men's forum and asked around. I was pointed to Peyronies Disease from a member that recognized the symptoms.

I did a Google search and started the journey of information gathering. Before going to the Urologist, I was almost certain I had Peyronies Disease. Due to Health Insurance deductibles and coverage, I had to wait until October to see a Urologist.

In October I was officially diagnosed with Peyronies Disease. My treatment was the standard- Colchicine twice a day, Vitamin E and a "new untested treatment" that spawned a successful recovery rate in the early stages of Peyronies Disease, Topical Verapamil ointment from Peyronies Disease labs.

I began the information process, trying to get my insurance to cover the ointment, but due to the proprietary formula, my insurance was skeptical, which made me skeptical and I have a hard time with Pharmaceutical Companies and their "snake oil" salesmen approach to health care. (treat the symptom not cure the disease)

While researching Peyronies Disease labs, I found this forum.

Where I am today, future plans -

Today, I am still experiencing painful erections and ejaculations. Due to the pain, I have ceased trying to have sexual relations with my wife (2 weeks now), I am afraid to have erections. I am also ceasing the daily oral remedies, colchicine (bad diarrhea) but am still taking Vitamin E 2 400IU tabs daily.

Due to the "success" that seems to be had here, I am going to discuss the V.E.D. route with my Urologist, to start once the pain subsides, which I have no idea of time frame.

[Seigar]

Just found this forum yesterday and was glad to find so much more information etc. on the disease. I am just turning 60 this month and began to notice something different about a year ago. When getting an erection I noticed a feeling of tightness on the upper surface of my organ. It didn't interfere with my performance so I didn't think much about it and at that time I had never heard about Peyronie's Disease. As time went on I noticed a lump on the top area of my organ and a one a little behind the crown. I though I saw a slight bending to the left as well but wasn't sure. I had a physical this past August and mentioned the observations. I then went to an Urologist and was diagnosed with Peyronie. At that time they only suggested I take 400 ui of vitamin E. Nothing else was suggested. Since then I have started with Peyrotin as well. Since August the bend has increased upward by about 30 degree and a slight dimpling on the left lower area. There is a sense of thightness with an erection but no pain as such.

As can be understood, I am concerned and a bit embarrassed about the deformation happening and am anxious to find anything that can help. Up until this summer I had an active sex life but that  has significantly been reduced. I live in Maine, USA and am trying to find the best doctors or treatments that I can get ot help with this condition.

[Old Man]

newenglandguy:

Welcome to the forum. You have come to the place where there are many of us in the same "boat". Peyronies Disease is not a respecter of persons, so it strikes any and all with a passion sometimes. I know the feeling you have at the moment - what to do.

First, you should get yourself to a good urologist who has experience in treating the symptoms with a better approach than the one you stated in your post. A second opinion is always a good start to establish a baseline for what the situation is and what may be done about it. There are many good uros out there than can give you advice in your particular case, so try to find one. The "c" med your uro mentioned could be one of several that started with that letter. Colchicine comes to mind, but it has not had much success based on the reports of several of us who have taken it.

You should go back through all the posts on the forum and read up and what others have experienced and what they did to help. Each and every Peyronies Disease case is totally different from another. Yours may be similar, but not exactly like any other. You have to develop an approach to your individual needs based on your symptoms. There is a wealth of information on this forum for just about any case of Peyronies Disease that can be had. Reading can be a great help in your selecting your individual therapy.

Good luck to you and continue to seek help from any and all.

Old Man

[newenglandguy]

Age - 48

Age of onset - 48 - just found out two months ago.  When it first occurred - the pain - I thought I had bumped or "bruised" it somehow.  Then the pain started during erection.  I then felt a bump and my first concern was that I had cancer.  Finally called Urologist, and he diagnosed Peyrione Disease.  Prescribed 200 IU of vitamin E twice a day orally (I think - now that I just read through and see some are applying externally I have to ask.  He also prescribed somthing that starts with a "c" , but I can't find it right now because I've been afraid to take it. Started reading its side effects and it talked about hair loss and other undesireable effects - and I'm not sure which would be worse.

Not sure what to do, but I'm still experiencing pretty severe pain during erection.  Don't have much of a bend and there is a little know (plaque) mid-penis on the top.  I think I remember the Urologist saying the pain would last several months.  Just found this forum, so I want to read more and see when the pain usually subsides.  Also, does the curvature get worse?

[ox bow]

I have been dealing with peyronies since Feb. of 2006. The peyronies progessed until my penis was bent at a steep downward angle and curved to the left. I was told that I was lucky that the condition had stopped where it had and that I should "keep an eye on it." I then read a post by,  I think it was Hawk, that spoke to 1000 mg. of vit. E, Pentoxiffylli 400 mg. and hot water soakings. In may of 2006, my reluctant urologist agreed to prescribe the drug and let me try it. He was skeptical.
In  July of 2008, he was surprised to find that my plaque had faded away in some areas and was  gone in others areas. He reluctantly said that he "may" tell others of the results. Today 11/5/08., my condition has greatly improved. I still have a  bend downwards but not very steep, and some small pieces of plaque. (which are fading) However my shaft is much fuller with a healthy blood flow. I continue to take Pentoxifylli 400mg. twice a day and use hot water soakings. I believe that peyronies is, in my case, not unlike a sport injury. It has taken a few years for me to have recovered this far. I want to thank all of you for your help and advice.
I just want to encourage everyone to keep up your hope. It may take time, but I know that positive results are possible. Thanks for this site and the hope it brings.

[bent70]

Age - 38

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 37

Very First Symptoms - Mild pain whilst having sex with my wife, also experienced an ache when flaccid.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I never experienced an injury or a memorable "event" to cause my Peyronies. I just noticed an ache whilst having sex with my wife last November. Unsure what it was so I did nothing about it for a couple of months. After this period I noticed a hard cord like plaque had developed across the top of my penis, running almost all the way from base to tip and I had a bend upwards of about 30 degrees. I mentioned it in passing one day to my father...Dad then spoke a classic line...."Hmmm, strange that you should mention that...." as it turns out my father - and his brother both have the "condition" (Dad's brother also has dupuytren's contracture). My father had seen his family doc who pretty much told him there was nothing that could be done. (I have a very textbook history - the disease runs in the family and we are of Nothern European background) I did some internet research and started taking 800IU of Vitamin E and used Vit E oil until it started to irrtate my skin (after a couple of months).

Recently I discovered this forum and read up pretty extensively. In the year that I've had the problem my bend has worsened - and now also points a little to the left (about 15 degrees I guess). About 5 days ago I noticed dents on the underside of my penis and I can feel plaques on the underside nearer to the tip. It's been a little sore again - and tingling a little. My wife and I are still able to have sex and she is extremely supportive of me....we've just been having sex a lot less this past year. ED is not yet a problem, though my erections are weaker. I have lost length - maybe a couple of centimetres and I've lost girth too.

I was extremely depressed when this began, but am dealing with it a little better the last couple of months. I'm hoping I'm getting close to a point when it will stabilize a little. I have finally booked an appt with a urologist - though I belive this to be pretty pointless. I do not want injections of any kind and I'm not sure if Pentox is being prescribed for Peyronies in Australia. BTW my uncle says he was completely healed with a series of injections of Verapamil....better than he could have imagined in terms of the curve being "cured". I started taking L-Arginine this week. I'm unsure about ALC as I'm also on meds for a sluggush thyroid (apparently the two don't mix). I also have low testosterone and joint problems. I've never been overly healthy even though I look after myself and eat well....bad genes I guess.

Well I'm sure you've heard enough about my Peyronies story....

Where I am today, future plans - Off to the uro next week. Keeping up the Vit E and L-Arginine. Would love to hear from anyone taking ALC with thyroid issues - or any info.

All the best to all of you with this ridiculous affliction.

[aerosick]

UPDATE: 10/27/08

I have been taking Vitamin E and applying Vitamin E oil for 3 months. I have used the single tube VED daily. My circumference size came back to almost normal and the bend is less curved now and not just hanging limp as before. My wife finished our sex last night by releasing me by hand. She said that a few seconds before and during my ejaculation, the end of my penis straightened up and looked like it did before my accident in April '08. My length is also coming back.

I am exercising daily now using methods taught to me in my Physical Therapy for my injured left leg and right wrist. My overall physical health feels better now and my muscle tone is improving. It was hard for me to get into daily exercises though! I never did this when I was working.

I am hoping that I won't have a relapse! The above is working for me now, so I won't go back to the Urologist yet.

Billy

================================================

Age - 67 years old

I have had Peyronies Disease for X Years - 1 month

Very First Symptoms - 3 months ago I crashed my Harley on a curve. I slid down the road into a guard rail. My right wrist was fractured and my left leg bone near the hip had to have a steel plate screwed into it. A few days after the surgery a large bruise showed up on my groin area mostly the left side. 1 month ago I saw that during a morning erection the end my penis (approx 2") dropped sharply in size, had a crease at the bottom and hung down about 30 degrees. I went to the Urologist.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - The Urologist instantly said it was Peyronies Disease and told me how the different surgeries had mostly bad results, including permanent impotence if any nerves were damaged. He advised me to take Vitamin E 100 I.U. daily to soften the scar tissue. I am taking 600 I.U. + applying Vitamin E oil several times on my penis. I also massage my penis several times daily by rubbing it between my hands, like rolling a pencil.(It's just that there's no more lead in that pencil!  Embarrassed ) Well, almost none. I still have semi-erections during the night and in the mornings, but when I awake, my penis goes to sleep. I have lost some length but not width so far.

Where I am today, future plans Where I am today is finding this Forum! Thanks for the intensive effort keeping this Forum going. I am a Moderator on 1 Forum and an Admin on another, so I understand the work (volunteered, unpaid, etc) that this entails...

Billy

[crazybrab]

Age - 23

Age at onset of Peyronies Disease 20

Very First Symptoms - Those of penile trauma. Sudden loss of erection, penile pain & tenderness. Immediate loss of spontaneous erections and inability to obtain an erection and extreme soreness. Immediate total loss of nocturnal erections.

My Peyronies Disease progression, Treatments (in order):
1. For 2.5 years, I fought hard to hide the problem, too panicked, and hoping things will suddenly be OK again. Some erectile function returned, consisting of very weak, very 'worked' erections. One day, I was unable to attain even a weak erection for masturbation. This set off a panic attack and my penis became completely shriveled, making urination difficult too. GP prescribed Beta-blockers which further compounded the problem. My mental health continued to deteriorate to the point of suicide.I finally confided in my parents, who took me to the Czech Republic to get expert medical treatment. I was hospitalised for three months in psychiatric care.
During my stay I was diagnosed with:
1. Prolactin-secreting tumor of the pituitary gland.
2. Low testosterone, via binding of too much free testosterone to Sex hormone-binding globulin (SHBG)
3. An extremely stiff pelvic floor, and prostate in excess of 40g.
I was discharged from hospital in May this year, and have since been recuperating mentally and finishing of my MSc degree which I was unable to complete.
As I could only get a 'floppy' erection, (deviation right onto left leg) I was unable to actually see the curvature.

Where I am today, future plans -
I have a mixed bag of problems, so its quite hard to untangle each influence. I'm taking cabergoline for my tumor, nothing for the low testosterone (at the moment, dont fancy atrophy of my balls!), The prostate -  lots of drugs and lots of kegel exercises.

Where I believe I fractured my penis, I am using cocoa butter for massage (gentle, 1-2hours per day) and once a week, 25mg of the famed blue pill. For self stimulation, I use adult material on the web. For the past three months, I have massaged my penis with cocoa butter, and have obtained some form of erection at least once a day with the help of adult material. Although i feel a slight hinge and indentation at the point of injury, by some miracle, it has for all practical purposes straightened out completely.

I visited a Urologist 2 weeks ago, who confirmed that I have plaque  near the base of my penis and am scheduled for extracorporeal shockwave therapy.

I have discussed the VED therapy with many doctors.Definite no go area.

Erections are improving, some days I get an excellent erection, most other days, now, or lots of work. I'm assuming I've made progress on the physical side (peyronies plaque), but hormones, prostate etc are still unresolved, responsible for varied quality of erections and sporadic nocturnal erections.

Future plans, given I've been thru psychiatric care, well get on and live life. Its too short to waste, and many people would happily swap shoes with you - it is just a part of your body and there is no point in getting obsessed with it. The worry will be a bigger problem than the physical problem.
Treatment-wise, I've got no idea what the future holds in store, too many variables at the minute, will just go with the flow.

Lesson for the young guys with peyronies/ED
Get it out of your system as soon as possible. Speak to friends, confide in your parents, see a doctor, and get someone to speak sense to you - life ain't over, the best is to come.
I've learnt the hard way. i tried to suppress it in me for nearly three years. Trauma led to payronies and ED. With no erections, my prostate became congested. panic, anxiety etc probably triggered my pituitary tumor, and ED led to chronic loss of desire for sex and hence problems with testosterone. One problem snowballed into many health problems, 3 months in a psychiatric ward and something that will take years to unscrew.
In hindsight, ED/peyronies is "dick-all" of a problem, need to put it in perspective!

[Fred22]

I'm 64 years old.  Been experiencing penile pain since April of 2006.  Brief Summary:
May 2006:  My GP (actually a nurse practioner) prescribed 10 day course of Cipro which did no good.  2006-2007  3 trips to board certified urologist for yearly PSA and rectal prostate exam plus a cystoscopy. No problems were found.  On each visit to uro I mentioned the pain and he basically said he didn't know what could be causing it and offered no further tests or treatment. Took a very casual attitude.  In the meantime I'm in almost daily pain and taking 800 to 1000 mg. ibuprofen almost every night. 
April 2008:  Woke up one morning with a partial erection and noticed an upward curvature.  I immediately concluded "Peyronie's".  It was again time for my yearly prostate exam so this time I decided to go to a different uro.  I'm in Memphis and the University of Tennessee Med Group is supposed to have some of the best drs. in the area.  I called one of their urologists (in fact I think he's the chairman of the urology dept.) and before making an appointment, made sure that he was familiar with Peyronies Disease and had a treatment protocol.  This Dr. is a professor at UT Med school and practices 2 days a week.  I was assured that he was well versed in the treatment of Peyronies Disease. Now I'm thinking I'm on the right track.  I saw him last week and he felt my penis and said that I had a small amount of plaque at the base.  Diagnosis: Peyronie's.  He immediately said that "We need to get you on 400 mg. vitamin E per day to soften up the plaque and come back in 6 months".  He said something like 50% of cases stay the same, 25% get better and 25% get worse. I mentioned Pentox which he had never heard of. Said it wasn't mentioned in any of the research lit. that he had read. To his credit he didn't want to do any kind of injections, even to induce an erection as it could cause further scarring. He said to take a picture. He was familiar with Verapamil and said that some of his patients had said that they had improved using the transdermal type. He said "The mind is a very powerful thing", leading me to believe that he didn't have much faith in Verapamil and that these patients were merely experiencing the placebo effect.  He said he could give me a script for a VED, but that if I can get an erection then I really don't need one.  I'm able to get a firm erection, but my wife and I have had little sex in the last 2 years due to the pain.  He encouraged me to have sex as that could be beneficial.  He went on to say that there is very little research in this area as all the research funds are going for cancer and heart research because those are the big killers in our society.  I asked him if he had heard of the Auxilium clinical trials with Xiaflex and he hadn't. 
So at this point I'm supposed to take 400 mg. of vitamin E and go back in 6 months.  My PSA had gone up from 2.2 last year to 3 and he seemed more concerned about that, but I've read that I'm in the normal range.  My question for you guys is, "What do I do next?"  I've read very "mixed reviews" about vitamin E and was disappointed that this was all he had to offer.  I plan to go ahead with the vit. E.  What's the best type to use? (Mixed tocos, alpha, gamma, a good brand and place to order it on the net, and any further suggestions from anyone on this forum.)  The pain subsided somewhat in May of this year and I'm no longer taking the ibuprofen although I'm experiencing some pain almost daily. Sometimes aching, sometimes burning either during urinination or afterwards (my urine sample was clean). The Dr.said that with Peyronie's I should only be feeling pain when erect, but I've read many posts on this forum that seem to contradict that.  Anyway, sorry for the long post, but any suggestions would be greatly appreciated, especially about the type of vit. E and other options.  Thanks.

Fred       

[Steve]

I was just looking throught the Histories, and noticed that I'd never posted mine!  Sorry about that:

Age - 57

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 54

Very First Symptoms - After discovering an alarming bend a year and a half ago (70 degrees up, right behind the Glans), and researching it, I went to my GP who sent me to a Uro.  They both confirmed what I'd suspected, that I had Peyronies Disease.  With 2 shots to go out of the 12, I convinced him to write me a prescription for a Soma Correct (which the insurance never paid for either ) so I started the VED while still on VI.  The last 2 shots were real bruisers, so while the bruise was present, I held off on the VED, so I really didn't get started on the protocol until after all the shots.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -The first thing the Uro did was to put me on a Topical Verapamil (TV).  He didn't recommend the Peyronies Disease-Labs stuff...he didn't even mention it.  I had a local compounding pharmacy mix up some, and tried it for about 15 weeks.  Same results that most people have gotten with the Peyronies Disease-Labs stuff, but a LOT less money!  I asked him about using Iontophoresis to administer the Verapamil, but he was totally unfamiliar with the practice and mentioned that they don't have the equipment anyway. Next, we went to the Verapamil Injections (VI) starting at 10mg every 2 weeks.  Pretty uncomfortable!  I'd asked about the shots actually causing more plaque, and my Uro told me of a study done that showed that the shots did not cause additional plaque.  I never saw the study, and couldn't find any reference to it on the web.  After 6 shots at 10mg didn't have any positive results, he upped the dosage to 20mg and continued for another 6 shots (12 shots total).  The only results from all the shots was an occasional badly bruised penis, and more lumps (plaque?) around the injection sites!  So much for the 'study'.



Where I am today, future plans -  Well, as of today (8/27/08), I've had Peyronies Disease for 160+ weeks, and have been using the VED for over 115 weeks!  (Prospective VED users, do not take my experience as the norm...I've heard of LOTS of guys being helped by the VED regimen -- talk to Old Man).
For me, nothing yet has shown any positive result   I'm still leery of surgery, and am waiting for the trials of Xiaflex for Peyronies Disease.
 

[Lazer]

Hello I am Lazer a new member. Just discovered your site this week. There is so much to read I don't know where to start, but a little background.

Age -55

Age at onset of Peyronies Disease 50


My Peyronies Disease progression, Started having ED about 15 years ago and Urologist sent me to an Endocrinologist, after many tests was told that my Hypothalamus was no longer sending out the signals for testosterone productions, and I was required to give myself Testosterone injections on a monthly basis.  After Viagra was released to the public, I sought out a Urologist who specializes in sexual dysfunctions for a prescription. He did a thorough exam including ultrasound and it confirmed major venous leakage and to my surprise, also Peyronies disease. Calcification in the middle of the shaft. I had noticed a slight upward angle of the tip but had felt no pain. Per the Doc's recommendations, I switched to testosterone gel, and started a regimen of Verapamil injections. We did twice a month for 14 months, we went so long because we didn't see any improvment for over 6 months. It finally started getting better and it was almost gone at 14 months , 28 VI's, then an injection point somehow got infected. I stopped the injections while the infection healed. Being tired of the time and drive to the Uro's office, I decided to take a break from the injections only to discover 4 months later, it came back quickly, worse than ever, with calcification at many points including at the base, possibly inside, middle and at the area inside the penis head.
At this point the Doctor added a regimin of ultrasound to the Verapamil injections for 6 months. At this point no improvment was seen and the doctor agreed that therapy was no longer working. We discussed some surgical options but the side effects were not acceptable to me at this time.    Other options we discussed were Verapimil ointment and other ointments but he said they do not work because the skin on the penis does not absorb medications very well.
   I started to do some research on line, but until I found your site, I have not found much except alot of companies promising results if you buy their expensive medications. One on-line doctor did talk about the importance of getting oxygen to the penis, he said blood has healing qualities, and recommended a VED, heat therapy, penile massage and his pills for more bloodflow to the penis. I also tried an online recommendation for lots of vitamin E, both oral and vitamin E oil concentrate. I applied the oil every other day for 6 months and all it did was burn the nerve endings with a result of numbness of the skin of the penis. That was 3 years ago and some of the feeling is finally starting to come back. It has been an psychologically crushing experience, and like so many of you , I daily cry out "why me".

Where I am today, future plans - going to start researching this site and just ordered a VED.

Thanks to all who post here

[joe]

Age - 28 (2008)

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 26 (have had for 1.5 years)

Very First Symptoms - About a week after trauma to an erection, I noticed a small dent on the side of my penis where the trauma occurred when erect - about the diameter of a pencil.  I had an idea of what it might be since my father told me he himself had peyronie's.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - 
I scoured the net only to find the same old stuff everyone here has found, along with the worst advice ever - wait since most cases resolve themselves within a year.  I wish!  I found this board and lurked until now, reading up on all of your advice.  Being young, optimistic, and in good health, I decided to wait before seeing the urologist to see if I could take care of it myself through supplements.  I've been on Vitamin E and ALC for a year meanwhile my condition progressed in leaps & bounds.

Over the first year the initial dent spread to the base, about a 2 inch long dent, which caused a modest 15 degree bend to the left.  Then one day it spread to the top which added a 40 degree bend up from the base, like a hockey stick!  Fortunately (probably not the correct word here  ) since the bends are near the base I can angle the whole unit down and still have sex.  My fiancee claims she can't notice a difference but I think she's just being nice.

After a year since the initial symptoms I made an appointment with a uro, who prescribed - wait for it - potaba!  I was not very enthused since I had read the negative opinion most of the members here had of it, but decided to try it anyway (my uro had not heard of pentox).  I have been taking potaba (24 pills/day!) for 6 months with no improvement. Although my peyronie's hasn't gotten worse in this time either, maybe that's improvement?  Or maybe I'm just entering the "stable" phase.

Where I am today, future plans -  
I plan to persuade the uro to prescribe me pentox, and keep taking E, ALC, and anything else guys here recommend.  Other than that I plan to stay healthy, keep busy with work, working out, video games, anything that keeps my mind off it.   

[Old Man]

sweeper:

Looks like most everyone overlooked your post. Welcome aboard the forum. Sorry to hear that you have joined the ranks of the Peyronies Disease sufferers. It is not something that I would want to wish off on anyone.

If there is anything we can do to help, just let us know. Keep posting so that we will know that you are still with us. There is a lot of information about ED and Peyronies Disease on the topics here.

Regards, Old Man

[Iceman]

hi jxyz - what a terrible email - do you think that there could have been something you could have done earlier which would have prevented this from progressing this far - ive had Peyronies Disease now for 7 months and the pain has at least eased up - have you tried VED??

[jmaxx]

Age: I'm 48

Age at onset: 47

Very first symptom:
I was 28 years old with my first bout of peyronie's but it healed completly in six months.
Recent history started full blown one year ago and has not relented for more than a day.
Every day my penis is shrunken and it feels hard.  I no longer get erections even with cialis.

I live in the Chicago area and have seen Dr. Levine at least four times.  He's a nice guy, classy guy.  My visits always last twenty five minutes because I bring a list of all my personal research and a compilation of our members research. On my first visit with Dr. Levine I asked about the glycation connection to peyronie's, his response was he doesn't think there is a connection.  Then he said, "It could be possible but the lab hasn't proved it."  Every visit I had a battery of questions for the poor man. 

Treatments:
One year ago I started Pentoxifylline 400mg x3 daily... is not helping, Meloxicam an anti-inflamitory 7.5mg x2 daily... is not working,  On my last office visit he said there is nothing he can do for me. 
I have taken every supplement there is.  Dr. Levine said don't waste your money on supplements with two exceptions, L-arginine and vitamin E.

Here are the supplements I have wasted my money on:
Acetyl-l-carnitine, Alph lipoic acid, Glutamine, N-Acetyle-L-cysteine, cystine, glycine, Quercetin & Bromelain, Polyphosphtidylcholine, mangosteen, grape seed, turmeric.  And to many many many others to list here.

My peyronie's progression:
Starting from first week I have active-inflmation every day.  My penis is so tight with inflamation I can't stretch it out to measure how much length I've lost.  Dr. Levine suggested traction and or vacuum but not injections since I only have a small lump however my entire tunica seems to be inflamed.  I try light vacuum, it aggrivates the condition to much.  I try traction, penis pulls out because it is pulling inward (con forza)

Psychological stages:
My only hope is that there is such a thing as a "Stable phase." Since I've had peyronies one year and been on treatment since the first month of signs, maybe in six to twelve months I will reach the "stable phase."   

Because of the incredible suffering I am going through I have learned to become a kinder more compassionate person.  The Greek author  Aeschylus, one of my favorintes, wrote of the struggle to reconcile the existence of God in a world filled with suffering.  I believe in making this world a kinder gentler world as the greeks wrote of.  But I have never believed in a god.  So true and so sad.  From first to last person here.  Everyone will suffer as our penis slowly, painfully shrinks away to a useless appendage.  That is our awful curse.  Dr. Levine's last words to me; "There is nothing more I can do for you."

[sweeper]

I'm so glad for this forum... this is my story...I hate this, I've always been proud of myself down there, when it started loosing size. I thought I was done for. Cancer, or God knows what. I hate DR.s. Wont go unless I need stitches or a bone setting. After reading these forums I feel much better. I remember now after reading on here about the pop while having intercourse with my wife. At first pain, then back to normal.

Didn't think nothing of it. but after a few weeks it started at the base, (getting smaller) now it has the hour glass shape. I can still satisfy my wife and thats all I want. Its been about 6 mos. I hope it gets back to normal, but if not I'll be OK. I feel a great relief now. No use going through mental grief when it's not needed...

Oh by the way I'm 47 going on 27....and I'm trying Vit E, Vit B, castor oil, and stretching exercises with no results yet.

[Aeternus]

Age - 28

Age at onset of Peyronies Disease -  27 (maybe a month before my 28th birthday)
                                                           Max time since first symptom - 3 months.  I can't quite recall when I first noticed symptoms.

Very First Symptoms - After reading some of the posts here, I'm not sure what was the first symptom.  I've always had a downward curve, or the banana effect of a reasonable degree. I am currently and have been for some time, single.  A few months ago, while gratifying myself, I applied what I guess was excessive pressure on the top of my shaft using my thumb which resulted in an immediate indention about an inch down from the glans and some minor discomfort.  Hoping it would correct itself, I avoided masturbation and when I did masturbate I avoided touching the area.  I did experience some minor pain and discomfort during erection and seemingly randomly while flaccid.  I'm not sure how close in proximity to the initial trauma, but I soon noticed a small hard mass that could be felt along side the left of the urethra close to the area of the trauma.  The mass seemed to be nearly exactly in the center along the shaft and could be felt from top and bottom while flaccid.  Pain resulted from most pressure or contact.  At first I chalked this up to my recent practice of a perhaps excessive grip while administering the 'shake' after urination due to a current case of long term prostatitis.  I resolved to be more gentle and hope that this too would work itself out.  About two weeks ago, I noticed a second small mass just down a bit from the first in nearly the same position.  At that point I figured I needed to get checked out ASAP.  At the point that I went to the Doc I didn't seem to be experiencing any real pain or discomfort during erections or otherwise.  The evening of the visit, I obtained an erection and certainly did notice pain as well as the following day while flaccid at work.  Since then I've been relatively pain free, so I can only assume that at this point in time, my pain in directly related to the amount touching and pressure applied to the scar tissue/plaque/whatever they really are.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

I scheduled an appt. with a Urologist in town after discovering my second hard mass.  While waiting for him to come through the door, I perused a pamplet on ED & Peyroine's desease, and thought 'That's probably what I've got'.  Low and behold, the Doc diagnosed me with Peyroines after squeezing on the masses in my penis.  He thought that since the masses lay almost nearly along the middle of my penis that the eventual result would be an accentuation of the already present curve.  He said some other things, but I was basically in shock due to the realization of the eventual implications of this disease.  The next day I noticed a third mass a bit further down the shaft yet.  I've begun attempting to catalog the shape and size of my erections through pictures and measurements.  So far I have currently noticed no change in length, girth or curve, although it is possible the curve is slightly greater. 

Psychologically speaking, I actually began to break down after getting in my car to leave the Docs.  I was, however, able to pull myself together and get to work.  Since then I've attempted to minimize focusing on the potential devastation that this might inflict on my ability to function sexually.  Unfortunately, avoidance is my typical method of dealing with difficult things, which is obviously not good.  I've informed my immediate family of my diagnosis and have shared a bit of the possible outcomes and treatments as I have gleaned them from here and elsewhere on the internet.  As I have not yet realized any major physical changes due to the disease, I am able to maintain a relatively positive outlook.  From what I've read, changes can come quite abruptly though.  Being as I have really only just recently been coming out of a long bout of depression and struggle with anxiety of 5-8 years, this diagnosis could pose a significant problem should I relapse into that psychological state of mind. 

While I am currently single, it has been my hope to marry sometime within the next few years.  With this diagnosis, I am unsure of how I should proceed in pursuing a relationship due to the possibilities.

Where I am today, future plans -

I'm trying to force myself to continue to research the disease and all my possible options.  I plan on making some supplement purchases soon in hopes of doing whatever I possibly can to minimize the damage.  I'm looking at the Full spectrum 400 Vit E, but I'm not sure what else to go with.  With my current symptoms, I don't know what to pursue, but I suppose I may simply try the things Geoge999 suggested recently in the Oral Treatments thread. I do not yet know if I will attempt to see a specialist.  The nearest to me (in East Texas) appears to be a Doc in Louisiana.  From what I've read so far, the specialist do not always offer any more than another Uro. 

Any thoughts or suggestions would be appreciated.  Thanks for having this community available.  I'm not sure what I would otherwise do.

[trussin]

I'm very thankful to have found this board.  I'm 36.  A couple weeks ago, I noticed a lump in my shaft.  My regular physician wasn't too concerned, but wrote Peyronie's on the back of his business card for me to investigate.  It didn't feel like a diagnosis at the time and he wanted to follow up in one month.  A few days later, I began having some pain and discomfort and decided to see an urologist.  I am very displeased with the UR's bedside manner.  Upon feeling the lump, he immediately said "Yeah, that's Peyronie's".  He then copied a few pages from a dated medical book, and sent me out with a prescription for Potaba and Vitamin E.  I was in and out in under 10 minutes - stunned and confused.

So far, I have no noticeable curvature - only the lump or two, but have occasional pain, and a dull ache (almost burning sensation) most of the time.

The lack of information from the UR really disturbs me, and I'll visit another one on Monday, who lists on his description a special interest in Peyronie's. 

My wife has been VERY supportive, perhaps even my strength, thus far.  I started vitamin E, although I still need to find a broad spectrum pill.  I'm also looking for aloe vera caps, but we've been applying the actual plant juices and aloe lotion topically.  I picked up the Potaba today... even with insurance, the copay was U$370 for a one-month supply.  Needless to say, I'll be investigating CHEAPER options!  For that amount, that prescription should come with a steering wheel.

Once again, I'm very thankful to have found this place for it's wealth of information.

trussin

[duenorth]

hi, I'm a new member to the club.

     AGE: 53         Age at onset: 53

     First symptom:   It's difficult to be accurate about this.  I seem to remember about 4 months ago looking down while urinating, and thinking that something looked slightly different--maybe a slight tendency to lean a little to the right. No pain, no symptoms  or curvature (at least not very noticeable) when erect.  this may not be entirely accurate, however, since i have forever had a natural gentle curve upward. No recent history of injury--but have had the usual occasional traumas due to an overenthusiastic encounter.
 

     Progression, treatment, doctors, observed changes, etc:   just within the last month went from no curvature when erect to about a 45 degree or slightly greater curve starting just behind the head, and curving straight upwards (hence the user name).  have not found a physician yet, as i am a big believer in finding the right one. if anyone knows of a good one in the Cleveland, Pittsburgh, Buffalo tri-state region, i would appreciate any input.  I have been reading around the forum (what a godsend), and have
formulated a preliminary treatment plan, involving VED and pentox primarily,  and also included l-arginine, NOS stimulators as well as other supplements.  I also ordered some trazadone in case i decide to use it.  Since i am a doctor, obtaining what i need will not be a problem.  I plan on starting in earnest once i accumulate all of the supplies.   Again, any input as to what i should be doing is appreciated. 

     Psychological aspects:   Not thrilled about it, but try to keep it in perspective (i have a close friend who is having a brutal battle with leukemia).  I saw on one post someone query as to whether there could be a relationship between our disease and testosterone levels.  Prior to this happening i was just about to have mine checked for a variety of reasons, some sexual.  I still can get and maintain erections, however     , "i ain't as good as i once was". and i have noticed over the past 8 months or so a decrease in my sex drive.  So i guess i will get this checked also. 


      Plans:   To get started on my treatment as recommended in this forum. I have 7 years in recovery from alcohol, and if it has taught me anything, it is that all that i can do is the next right thing.  Anyones help or thoughts about my plans will be greatly appreciated. 

[lwillisjr]

Age - 52

Age at onset of Peyronies Disease - 51

Very First Symptoms -

I literally woke up one morning with a severe bend in my erection. Up to this point in my life my erections had been what I would consider normal and straight. I jokingly asked my wife what did she do to me the night before. I had no pain, no hourglassing or hinging.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

I did some of my own research on the internet, and somehow determined this might be Peyronie's Disease. I sought out what I thought was a uro specialist in this area. I got the "yep, you have Peyronies Disease and there is nothing you can do speach". I left vowing never to return to this guy, and seeking out someone else. It didn't take long to find Dr. L Levine. Even though it is a 3 hour drive for me, I made an appointment to see him. He has what I would consider an agressive treatment approach, totally opposite of "wait and see".

Treatments

Everyday Vitamin E / Pentoxifyline / L'Arginine
Traction with a Fastsize device
Verapamil Injections


Psychological Stages

Confusion, anger, "Why did this happen to me".

observable changes

Nothing noticable. I just completed my 6th VI injection, and little if any improvement. Trying to increase up to 6-8 hours per day for the traction.

Where I am today, future plans -

Even with a 70 degree bend, my wife and I are still able to engage in intercourse. Some positions obvisoulsy work a little better than others. Still no pain, and I'm able to achieve erections. I had some ED at the onset which continues to this day. Dr. Levine wants to re-evaluate and discuss other options at my next visit. One option is surgery. I'm going to ask about VED as an option to try before surgery at this point.

Update - I asked Dr. Levine about VED therapy. His recommendation was that since the combination of 1. Oral meds, 2. Stretching, 3. VI injections, didn't work that he doubted that the VED would work for me. We discussed surgery and he shared results of a recent study completed on 125 of his surgery patients (I posted this in another post). I've opted for the surgery which is scheduled for July 21. I will keep you all updated.

July 21, 2008 Surgery Update - I had my Surgery 2 days ago. Due to my 60 degree bend, the surgery used was excision and grafting. The surgery was a couple of hours with an hour or so recovery for the anesthesia to wear off. I've taken it easy for a few days now, and had very little pain. I am pretty swollen and bruised however. The doctor feels we will be very pleased with the results. It will be a week or so before I am to attempt an erection, and then 6-8 weeks before intercourse. At this point we are being patient and hopeful of the results. Will keep you all updates.

July 26, 2008 - The last 2 days have been a little more painful. But the swelling is starting to subside. Because of the pain and swelling I've had no interest in trying to achieve and erection, but part of me wants to know if everything still works. So my wife and I started to kiss a little passionately this morning....  and YES, It's alive! We had to stop, as it is still a little painful, but things are working! We are really excited and encourged at this point. I'm sure it will be still a week or so before all the pain and swelling are gone, and we can go for a full erection and see what the resultant curve is.

July 26, 2008
The pain hasn’t been too bad, and I’ve had quite a bit of swelling and bruising for the first few days. I've seen shades of blue I didn't know existed. It has only been a few days since the surgery at this point, and we are still very hopeful for the outcome of the surgery. Still won’t know for sure for several weeks yet. During the second week following surgery, I am to start low doses of Viagra to help stimulate nocturnal erections. I assume this is to insure everything still functions properly. I have a post surgery following up visit with the doctor 2 weeks following the surgery as well.

August 5th, 2008
Today was my 2 week post surgery visit with my doctor. He was very pleased with the progress.  And I seem to have not lost any sensation anywhere, and everything is fully functioning! I had started low doses of Viagra the week before per his instructions, and the first few times was woken up in the middle of the night. The good news was I was getting nocturnal erections; the bad news is they were a little painful at first. All the pain and most of the swelling is now gone. The only swelling that remains is an area around the base. It is about 1 inch in length and all the way around the circumference. He said that this swelling is the result of a hematoma. And that this can happen as a result of the surgery, and that this will absolve over time. I forgot to ask how long though...    He recommended a stretching therapy for the next 4 weeks. This basically includes stretching the penis for about 5 minutes twice a day over the next 4 weeks, and no intercourse yet during this time. My wife and I are very pleased at this point. Other than the swelling from the hematoma, everything seems back to normal, and the good news is erections ARE STRAIGHT......  No more curve!

[end_t]

Age - 22

Age at onset of Peyronies Disease - 20

Very First Symptoms -

I noticed a little "lump" on a side of my penis almost at the base. Didn't paid much attention since it didn't hurt or make any bent or angle at all. Seek attention with dad (Pediatrician) who didn't care too much either.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

Right now I'm suffering this disease. Even though I consulted with by now 3 URO's none of them made any prescription. The first one did take an ECO of the corporea cavernosa and did notice a small 2 mm. Calcification on the right side where i have my plaque. Didn't prescribed anything. The second one I consulted wanted to operate right away, without even taking an ecography. The third one which is a very good Doctor where I live said he has seen around 3 or 5 cases of Peyronies Disease, but did told me he will update his knowledge or something like that and then I could come and consult him again.

Treatments

Everyday Vitamin E
Lately I added Shark Tail Pills

Psychological Stages

I had a terrible depression when the disease didn't seem to affect me that much. I overcome that, but now again I feel sad about the whole thing.

observable changes

Not positive. I had that little plaque on the right side, but then I started to develope a little one on my left side but in an upper position. Not exactly like a mirror of the first one which is at the base and at the right side and caused a bent that is very noticeable but didn't hurt that much. Now my other plaque at the left side doesn't cause any bent, but hurts terribly.

Where I am today, future plans -

I know it won't get back to the time where i had no Peyronies Disease at all, but i just want the pain away... And any positive change would make me very happy. No more future plans since this disease is very uncertain. 

Thank you. Any MSG PM and/or advice would be very appreciated.

[Ptolemy]

Age – 60 (November 2007)

Age at onset of Peyronies Disease – I was 58 years old (June 2005) at the onset of Peyronies and have had the disease for 2 years.

Very First Symptoms – Symptoms – I’ll deal with the cause in the “Peyronies Disease Progression” below. My very first symptom was tenderness when I leaned against the kitchen counter. My height is such that my penis is at the same height as the counter top. There was mild tenderness at the base of the penis that I had never felt before. From that initial symptom, I would occasionally feel around my penis trying to locate the tenderness and within days or weeks eventually felt a small lump about the size of a pea. My first thought was I better get this checked out for fear of a cancerous growth.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes – The cause of the disease was sexual intercourse where I was not as hard as usual and my female partner kept sliding up (forward) under me which caused my penis to bend (May, June or July 2005 timeframe). We continued in that bent rather uncomfortable position for me. I remember thinking that this can’t be good for my penis. This happened again a few days or weeks later and we broke up our relationship shortly thereafter. It was within a couple of month of those two sexual encounters that I noticed the tenderness noted above as the very first symptom. After discovering the lump which was difficult to find (the lump was not close to the surface of the penis), I made an appointment with my Doctor. That was probably within 4 or 5 months of the trauma to my penis. He diagnosed Peyronies and sent me to an Urologist which I saw a few days later in September 2005 (I keep records of Doctor Appointments but not sexual encounters). He confirmed Peyronies and recommended topical Verapamil from PDLabs. At this point there was slight curvature left and up when erect, right at the location of the lump. Size at this point was not compromised. Tenderness was negligible. In February 2006 I began Topical Verapamil 15%. Six months later there was no longer any tenderness but the lump had grown to the size of a dime and was easy to locate by feel but not seen while the penis was flaccid. By this time when erect the bend was very noticeable probably 45 degrees but length was still uncompromised. In October 2006 under the Doctors approval I doubled the application of Topical Verapamil 15% and continued with the Verapamil for another 6 months.

My experience with Verapamil and my views on PDLabs. I applied Verapamil for 14 months at a cost of approximately $3000 based primarily on the lies and bogus testimonies on their website. I endured itch for those 14 months and it was a total waste. If there is ever a class action suit against them I will gladly participate.

Around December 2005, my Urologist suggested that I try a vacuum pump. In January 2007 I began using the Soma Erect with the battery pump from Augusta Medical. I used the 26 week 3 cylinder protocol from VacuumTherapy.org. For two months I overlapped the Verapamil with the vacuum therapy until I finally concluded that the Verapamil as presented by Peyronies Disease Labs was a complete scam.

Where I am today, future plans - I’ve been using the Vacuum Pump daily for 8 months now. I have plaque that I am concerned is still growing. The injury is close to the base of the penis and the bend there is 90 degrees up if not more. My flaccid penis looks normal. The only straight erection now is inside the cylinder and I have lost a good 1 inch in length. I clearly have an “hour glass” effect where the plaque is. The plaque feels like it is the width of a dime and the length is more than a quarter in size. Intercourse is impossible unless I am only semi erect – soft enough that the bend is minimal but hard enough that I can insert it. Imagine how long you could keep that delicate state. Right, about 15 seconds later and it either gets hard and it bends making intercourse impossible or gets soft and becomes useless.

I have been diagnosed by an Arthritis Specialist as having DISH (diffuse idiopathic skeletal hyperostosis). DISH (sometimes called Forestier’s disease) is considered a form of degenerative arthritis and is characterized by excessive bone growth along the sides of the vertebrae of the spine. It is also associated with inflammation and calcification (bone growth) at other areas of the body where tendons and ligaments attach to bone, such as at the elbow, knee and the heel of the foot. These can lead to bone spurs. Heel spurs, for example, are common among people with DISH. I have all of these.

My belief is that the problematic autoimmune that contributes to Peyronies is related to that which contributes to DISH. I take NSAID’s for the arthritis. I hear they’re also good for Peyronies.

Surprisingly, I’m optimistic still about the vacuum therapy and will keep at it. Possibly there is some denial here but it seems to me that the vacuum therapy is stretching the plaque along the length of the penis. Or it could simply be growing down the shaft. For now I’ll concentrate on the optimistic view.

I am fortunate to find female relationships that are willing to care about me enough to engage in other mutually gratifying ways to achieve sexual pleasure. I expect to eventually achieve a reasonably straight and functional penis or will die trying to get there. I’ll never give up.

[NxNW]

Greetings Gents,

I'm 54 and was diagnosed about four months ago.  Prior to "official" diagnosis, I began experiencing slight pain behind the head of my penis during intercourse.  This was about a year ago; I was conscious of this for several months but didn't give it much thought.

After about three months, I began to notice a very small knot or lump behind the penis head.  A month later I discovered another small lump about halfway down the shaft.  Both lumps were on the top of the shaft.  At this point I began doing web research and came across Peyronie's as the probably cause. 

By this time, intercourse was more painful and difficult to complete.  The pain prevented a sustained erection.  Also, going from flaccid to erect was painful, mainly behind the penis head.

I brought this up with my GP during a routine checkup and he said it was probably Peyronies Disease.  Not wanting to bias his opinion, I never mentioned my web search and eventual thoughts on this.

The GP directed me to a Uro, so I made my first visit ever to this specialty.  After fluid samples and a DRE, the Uro examined my penis and concluded that indeed I had Peyronies Disease.

During this visit I complained that I had difficulty staying erect due to the pain.  The Uro's response was to further diagnose ED.  I walked out of his office with prescriptions for Potaba and Viagra.

The Potaba script was 6 capsules per day.  It gives me an upset stomach but I persist.  So far this is the only treatment I am taking.

Right after I saw the Uro (about four months ago and about 9 months since the first recollection of pain) I noticed my penis shaft develop the "hourglass" I had read about.  At this point, it took on an upward bend and to the left (north by northwest approximately).  I haven't pulled out a protractor during intercourse yet so can't comment on the angle.  But I and my wife have both noticed a marked decrease in both length and girth since the hourglassing.

I didn't use the Viagra for two months after receiving the samples.  I knew in my mind that getting the erection would be painful, so the last thing I wanted was a raging, Viagra induced erection.

However, I finally tried the Viagra and discovered something interesting.  After the initial pain of becoming erect, the pain subsided.  It turned out that the up-down cycle of erect-flaccid-erect was more painful than the sustained erection.  I wish I had known that sooner.

It's been about a year since my first perception of pain.  I can't tell if the Potaba is helping.  I would have to quit taking it to see if it gets worse in order to prove that it is I guess.  I'm not willing to take that gamble.

But after reading on the forum about the VED, I am considering trying that as well while continuing the Potaba.

One thing that struck me as odd was the Uro didn't mention anything about a follow up visit.  Presumably, when the Potaba prescription runs out a year after it was prescribed I might have to see him again to renew. 

Thanks to those who make this board possible and for those who have shared their stories.  It's been not only informative but a source of encouragement.

[Jorgesd]

Hello,

I finally decided to register and share my story after browsing this site for about 1 yr. 

I was diagnosed with Peyronies Disease 3 years ago.  I'm 36 and have been married for 5.5 yrs. 

I can think of two different traumatic events to my unit that could have triggered Peyronies Disease.  About 1 yr prior to Peyronies Disease, at gym working out with dumbells doing lateral raises, I get bumped from behind, my unit gets smashed from both sides with dumbells. Around 6 months prior to Peyronies Disease, having sex with my wife she makes an aggressive moves and I hear and feel a pop in my penis.

Noticed something was wrong when I wake up in the middle of the night with painful erections.  I see a urologist and he tells me to ride it out because there is nothing proven to help.  After about 1.5 years i have two plaques causing it bend up and to the left.  I avoided sex for a long time.  my wife did not understand but thanks to this forum it has helped us out. 

I have been on pentox for 5.5 months now, gnc vitality vitamins, gnc isomer vit E, and neprinol for about 4 months, and just started the SAM-E and phospatidyl choline because myriddin post.  I think my Peyronies Disease is stable right now but I still get painful erections.  Especially if I sleep on my stomach.  I don't get good slepp because I toss and turn trying to stay on my back.
\
I have had sex about 5 times last month.  with lube and I am feeling sooo much better.  My wife is very beautiful and very understanding. I am very grateful.  I still have my ups and downs. 

[Johnny]

Age - 33 and married for 13 years

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 3 months ago

Very First Symptoms - Painful and noticeable curve to the right

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I was born with a pretty severe congenital curve down. That sucks. But I still made it through Airborne school. A little bent one didn't stop me. About 2 years ago I found out that I can't have kids (don't have any either). That dosen't suck too bad...I have been able to buy a bunch of toys with the money that everyone else is spending on their kids. And now, 1.5 months ago, I was diagnosed with Peyronie's. I started the vitamin e 400-800mg a day. I also started Acetyl and Propionyl Carnitine. The urologist I saw told me to take the e for the next month (Dr. Sommers Columbus OH). Since then I made the decision to start the carnitine along with the e. I've noticed the curve getting a little worse over the last month and have stopped having sex because of the pain. Monday I go for my first injection of verapamil.

Where I am today, future plans - Just going to keep the research going and keeping a detailed log. Life dosen't end with this irritating disease. Actually, this whole thing has pissed me off and I'm focusing more on my career than I ever had in the past. It's paying off! Just have to make sure that my wife dosen't get left out.

I'm glad I found this board. You guys are really something!

Johnny

[SombreSoul]

Greetings all,

I'm a new member, but longterm sufferer

I've had what i believe is Peyronies Disease since i was about 12 (i'm now 32). I noticed a bend developing a year or two before starting High School. I believe it was caused by sleeping on my stomach. I cannot fall asleep in any other position than on my stomach. Anyway, as a boy and during my teen years i would wake up every day with an erection (dont know if this happens for others) and because i was asleep (and unaware) on my stomach, my erection was always being forced down. I believe having this happen everyday at such a young age damaged my penis and caused a bend to develop. I've forgotten what it's like to have a normal erection.

So during my teen years i had a penis that curved downwards (like a banana)and to the left. This completely screwed me up. I lost all my confidence and became anti-social. There has never been any physical pain associated with it for me and i have never felt a hard lump anywhere, which i've read is a build up of plaque which causes the bend. For years i didnt know what the hell was wrong with it and up until recently thought i was the only man on the planet with this problem. I thought of suicide a lot and became very depressed during my 20's.

My plan was to keep this to myself and take it with me to the grave. I have told no-one about it. This problem has made me the person i am today. I have never had sex and never even look at women. I avoid all eye contact with women because looking at them reminds me of my problem. I abandoned all my friends long ago and dont socialise. I am always working with guys that talk about sex, but i cant relate. They always ask me to join them at brothels and i always have to come up with some excuse as to why i cant join them ( i wouldnt join them even without my problem). My parents must think i'm gay because i'm never with women. I'm sick of seeing jerks getting women pregnant and then leaving them or guys raping women, while a nice young lad like me cant even use his penis. Those guys dont deserve a penis!!!

Anyway, my penis no longer leans to the left, it pretty much points straight out but curves further downwards. It no longer gets as hard as it once did and doesnt rise as far. I tend to go soft withins 10 seconds of becoming semi-hard. It takes a lot for me to get an erection and for some strange reason i tend to get erections on summer mornings when i sleep naked more than any other time. And they are usually harder than normal. I've never tried any remedies and dont know whether i should bother.

I have finally excepted my curse, but have always been so depressed that i would never find anyone who would have me. I dont want to grow old alone, but i continually punish myself by not allowing myself to meet anyone because of Peyronies disease. How could i possibly find a wife and have the house and family and live happily ever after??? As if there's a female out there that would want a freak like me!!  I dont get paid enough at work to ever get my own place and live as a single lad. Nup, i'm living with the parents until the end. At least thats what i thought.

For a split moment in time god has smiled down on me. 4 months ago i finally met up with a beautiful blonde who had been nagging me for over a year to meet up with her. We had known of each other for about 2 years as we're both snake keepers from the same area, but i was always avoiding her because of my Peyronies Disease. I just couldnt allow myself to fall for someone when i've got this disease and tried so hard NOT to meet her, but i finally followed my heart and met up with her. Well, it's now very serious and we both want to live together and she's starting to talk about having a family and how i'm the love of her life etc. I couldnt be happier as i love her and want her as my wife, but she doesnt know about my curse!! It's strange because she has pleasured me with her mouth and hand several times (in a dimmly lit room) and she hasnt noticed the curve (once the penis is in the hand or mouth it's kinda hard to notice the bend as the bend begins at the base and because it doesnt get that hard anymore, it's easy to bend it upwards). I have a feeling that it wouldnt bother her as my penis does still work i guess. But the poor girl thinks she's with a fully functioning male. Have i deceived her by not yet telling her of my curse?? I dont know how to tell her. I think she is expecting sex soon and has tried to get it recently but i dont know if i could even enter her because it doesnt get that hard anymore.

I'm so lost. This is the worst moment of my life because i finally found what i always wanted and am scared i will lose her. Could medicines help me? Should i see a doctor? What exactly does viagra do?

Thanks in advance
SS

[shrout]

Age - 53

Age at onset of Peyronies Disease  - 51

I have had Peyronies Disease for 18 months

Very First Symptoms - general soreness in the shaft lasting a few days, followed by two small lumps developing just behind the glans.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - over the 18 months a nodule about 1/2" x 1/2"  x 1/4" deep developed half way along the shaft at the top, with a shallower rubbery extension up to the glans. Deviation is about 30%, loss of length roughly 1 - 2".
I saw my GP about a week after I first noticed the changes. No immediate treatment was given but I was referred to a genito-urinary specialist, who I saw a few weeks later. He gave a cursory examination ( and I mean cursory.. i.e. a quick feel lasting about one second!! ), confirmed the diagnosis and said there was nothing he could do. 
About 6 months ago, after surfing the net for information and reading up on the various options I returned to my GP ( I saw a different one ) and asked if any of the treatments I had read about ( all have been mentioned on this site ) were available as options. He was quite supportive and went through most of them with me, but said none had any certainty of working, and funding would be unlikely anyway if he were to apply. I mentioned it had dented my confidence quite severely ( it has taken me a long time to gain a measure of confidence with women anyway ), and he quite rightly pointed out that female sexuality was complex, and penetration was only part of the whole scenario. That didn't make me feel  much better, I have to say.

Where I am today, future plans - I have been sexually inactive for those 18 months, because by sheer coincidence the diagnosis coincided with severe illness of my partner. So I don't know how much Peyronies has affected my ability to have intercourse. I imagine I can still achieve penetration, but not sure whether there will be pain etc. etc. There is still some soreness at times, especially if I handle it too much.
I'm hoping I can find via this site either an appropriate method of self treatment ( the infrared study in Italy gives me hope that that may be a way forward ), or any new information which I can discuss with my GP as a possible way forward.
I have to say I only found this site a couple of days ago so I haven't had a chance to have a good look around and see what the options are. I've certainly not found a better source of information on Peyronies anywhere.

Thanks for all your work... and for reading this.

[deejay]

Age - 46

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -  I first noticed pain with my erection about a year or so ago.. perhaps a little longer.  At that time no bend.  The bend happened within the past 8 months and I think has stopped getting worst (more bent).. though hard to tell.

Very First Symptoms - Pain, no bend, and then bend appeared and the pain lessened

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I've only tried taking Vitamin E at this point.  Have not seen any noticeable change for the better.  Intercourse is not impossible but the fact that I was not overly endowed in the 1st place does not help anything now that I have the bend.

Where I am today, future plans - Not sure.  Would like to begin a treatment but not sure which is wisest.

[BroWCarey]

Age - 49

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - Not exactly sure. When I was in my early 20's, following a somewhat botched hernia repair, I developed an odd chord-like thing that ran along the full length of the penis (dorsal). At first, the doctor who examined it thought there was a blood clot, but then decided it wasn't, but never gave a clear diagnosis. It didn't really interfere with sex, and eventually disappeared. Within the past year, I noticed a small pea-sized nodule in the penis, about an inch back from the glans. It wasn't painful, and I just thought it might be urethral scarring. (I used to get urinary tract infections any time I got dehydrated years ago... so I have had a few). In the past few months, I've noticed some ED, but attributed it to medications I take for various other ailments. But a couple of weeks ago, I got the real "angle" on what was going on... I'm bent about 90 degrees to the left, and there is some pain during erection. My partner and I haven't had much of an active sex life in years (due to a number of factors), but now even masturbation is pretty much impossible.

Very First Symptoms - I guess the ED, and now the "bend"

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - No treatment yet. As far as my psychological state, I am NOT amused! I don't expect my penis to work like it did when I was 20, but I wasn't expecting it to give out on me like this! And I'm not really encouraged by what I've read so far about treatments, prognosis, etc.

Where I am today, future plans - I only figured out that I probably have Peyronies Disease within the past few days. I will bring it up with my doctor as soon as I can get in to see him.

[stashua]

Hi i first noticed it two years ago,now it doesn't hurt but i lost two inches and it hooks up.my wife says it still works but i know she doesn't enjoy intercourse the same.i have been imaginative but i miss my unit the way it was and am now starting to do something ,although i dont know what, i bought one of the treatments fro the peyronies institute,dmso and vitamins,yhey can keep the "acupuncture"device and would like to get some input on the effectiveness of the stretcher,how and where to get the best one .I'm 50 and was very active with my wife before this.i'll give you all aq better history the next time i gotta run....steve

[arnday]

Age - 18

Age at onset of Peyronies Disease - Also 18, its not been a great year so far 

Very First Symptoms -pain in erections and then the lumps and the interesting new direction my penis decided to take in life

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - things getting worse, Uro was useless, only Vit E at the moment, no effect whatsoever, so.... my psychologist, fearing for my mental state wants to take me back to another uro, try other treatments. Have been a nutcase for several years anyway, severely exascerbated by recent onset of 'oh F^@% my johnsons stopped working' disease. So now, highly mentally unstable with a broken penis, still get erections though, although, what with the pain thats not really very helpful.

Where I am today, future plans - Today, im actually in my house, doing nothing, very limited future plans outside of drink myself to madness. Just generally go round causing terror. oh I should be somewhat better with my anti-depressants though

[dahc]

Age 44

I first noticed an upward curve and decreased length of my erection in January of this year.

The curve has gotten slightly worse and slight decrease in length.

I visited my first urologist here in Atlanta in early March at the recommendation of my internist. He did a quick squeeze & then stretch of my penis & said "Yep, you have Peyronie's", then he proceeded with a digital prostate exam . He actually knew about some of the Peyronies Disease oral meds & injections but he said they didn't work and I would have to live with it. I started searching the internet for doctors that had some knowledge of Peyronie's and found another urologist and made an appointment with him. He also did a physical exam of my penis but then started checking out my prostate and said it felt a little boggy. He offered very little hope for the Peyronie's except Verapimil Injections in year or so after my disease stabilized.

I finally paid for some telephone time with Dr. Levine in Chicago. He suggested L-Arginine, Pentox, Verapimil Injections & a Penis Stretcher starting right away. I have asked for my medical records to be sent to a Urologist at a teaching University nearby that Dr. Levine said he knows. Hopefully I can start treatment soon. Dr. Levine is definitely for early intervention.

[Escape]

Age -36

Age at onset of Peyronies Disease – 30

Very First Symptoms- A lot of pain, morning erections were extremely painful, sex was almost unbearable, it's hard to enjoy sex when it feels like your penis is being torn in two.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - The pain was consitant for about 10-12 months when I started to notice a bend about two inches from the tip. This got worse until the bend was about 45 to 50 degrees from straight (pointing up), with all this I still didn't go to the doctor, I had read a bit about Peyronies and I became quite resigned to the fact that there wasn't a whole lot I could do about it, finally went and saw a doctor (specialist) and he diagnosed Peyronies (I have no detectable plaque at all) and when I told him about my fears of ED and such he said "suck it up" - not good. The pain finally stopped and the bend is now about 25 to 30 degrees, I have quite a bit of wasting towards the tip (not hourglassing more just narrow below the head)and my penis is about 1 to 11/2 inches shorter but I still have full function though the top half is a bit softer when I have an erection than it use to be.

Where I am today, future plans - Not two worried about the future, I realise that it could all start up again but worrying won't change anything, there's more two being a man than having a straight dick. My wife doesn't mind the bend (i like to think that the bend targets the g-spot better. LOL)
Just  a point, when I was about 20 my girlfriend and I were having fairly vigorous sex (as you do!) with her on top,when she lifted a bit high and came down on top of my penis, it hurt like hell, and to this day I swear thats was when the damage was done, it's also interesting to see PJ mention keloid scarring, I get quite bad keloid scars and I've always wondered if there was a connection. One thing I should say that if you have peyronies tell people (at least your family) I felt it lifted a weight of my shoulders, a problem shared is a problem halved.

Cheers

[meanmrmustard]

Age: 23

Age of onset of Peyronies Disease: 18 (not 100% sure I got Peyronies Disease, docs say they can't feel plague, but I got symptoms like the hourglass and severe ED)

Very first symptoms: penis was bent in erected state, i have experienced a constant loss of the amount of erections and of their fullness. this process hasn't really stopped

Treatments: iontoforesis/verapemil which has improved things a little, particularly the sensibility of the glans, fullness of erections have recovered a little bit; I've been taking VitE 400 for 6 months, Pentox for 3 weeks and L-Arginine for 3 weeks; also I irregularly take Viagra or cialis, at the moment cialis 10 mg twice a week

Future Plans: having the lump im my left testicle checked out by a good doctor, the one I saw said it was nothing but it hurts sometimes and it swells when i take cialis. apart from than that I want to start using a VED and keep reading this board, which I'm glad I've found

[lwmson]

AGE: 58

AGE AT ONSET: 55

INITIAL SYMPTOMS: Pain during intercourse to the point that it was impossible to have intercourse for 3-4 months.  The pain went away but I was left with hard plaque in the middle of my penis that resulted in a banana shaped (and shortened) erection pointing at my belly button. 

PRESENT SITUATION: I am able to have sex now, but unfortunately have developed ED as a result of having to figure out a way to pee in the middle of the night with my penis pointing at my belly button.  My brain gave my penis the message to soften up and somehow the message is now in place for all erections, not just the middle of the night ones.  If I could figure out how to maintain an erection, I could deal with the shortening and bending of an already short tool. 

FUTURE PLANS: I hope someone here can give me some good advice on maintaining an erection.  I tried Viagra once and I felt like my head was going to explode from the pressure.  It is definitely not an option for me.

[IrishB OCD]

Age - 19

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - Birth.  I have congenital curvature rather than peyronie's disease.  So I have always had it.

Very First Symptoms - Curvature, with severe twisting.  Put together to make a 90 degree bend toward the left.  With slight curve up, but no more than most everyone has.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - Surgery Dr. Jamie Kapner in Phoenix, AZ.  Unsuccessful.  Nearly pointless...lol.  I had the surgery wich corrected some of the curvature, but now of the twisting so it's now about an 80 degree curve.

Where I am today, future plans - Unhappy.  Around 1 inch shorter than when started (down to about 6.5) due to surgery.  Considering another surgery, but I don't want to deal with having more shortening, and a second surgery could lead to loss of sensitivity....which I definately don't want.

Happy to talk to anyone who's considering sugery, it's not as bad as I make it out to be, I'm just a good example of what can go wrong lol.  Don't do it unless you really need to it is an extreme last resort!

[adam24]

Age - 25

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - I don't have Peyronie's but i have ventral congenital curvature (downward curve).

Very First Symptoms - I've had it my whole life

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -I'm in the midst of just researching options I have (which include 2 options - do nothing or have the Nesbit surgery).
Where I am today, future plans - I will likely see a urologist for the first time in the coming weeks. I am really afraid of doing surgery even though it is clinically considered "simple". It's a penis and any small mistake can be emotionally and physically devastating. So if there are any people out there with my condition who will go through this or have done the surgery, please be in touch with me!