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Other Peyronies Disease Discussion Boards => Our Histories - Meet the forum members and read our stories => Topic started by: Joshua on August 17, 2005, 07:57:58 PM

Title: Our Histories - Meet the Forum Members - ARCHIVE
Post by: Joshua on August 17, 2005, 07:57:58 PM
This is an valuable area where all registered members can choose to post their history, their story on Peyronies Disease. This area is designed to help us know each other, our challenges, successes. New members will find one place to go to find men whose Peyronies Disease progression they can relate to. The can quickly scan the headings and find men of similar age, or similar situation.  This will save members from having to repeat the same info over and over under other topics when asked about their Peyronies Disease.

In order to work, this must be the most structured area on the forum. It is only for our introduction, and each member that chooses to post, will be limited to that one post under this topic. Each member should add to, or update our histories any time we like, but we must do so by using "MODIFY" so our history is contained in that one single postt. We can cut and paste the format provided below. Delete any headers you don't care to use but keep the headers you do use in order. You have freedom to add headers if you like. Don't hesitate for fear of not getting it right, its no big deal. We will will gladly help out. Use as much space as needed. We want to know your story.

You can copy and paste the headers that are below. It helps to bold the headers after pasting them so it is easy to find the sections of your post.

If members want to respond to these histories, post your response under another forum topic.  This area is strictly for our histories and not for two-way dialog.  It is not a place to ask questions.



Age -

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

Very First Symptoms -

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

Where I am today, future plans -
Title: Antonio
Post by: Old Forum on August 20, 2005, 09:00:15 PM
Antonio      Posted: Thu Jul 07, 2005       3:27 pm   

Age: 52 (2005)

Age at onset: 51 (2004)

Time I've had Peyronies Disease: 6 Months

Very First Symptoms:


It all began one night with my partner (wife) on top. She came down and, we'll just say it wasn't a smooth docking. As Nick describes it; "Bang, Ouch, Damn". It only hurt for a second and in two seconds I was back in full production. Two weeks later I suddenly noticed an obvious curve when erect. It occurred literally overnight, no pain, sufficient rigidity, just a bizarre upward curve about 30-40 degrees off center.

I've only experienced pain one time during sex, aproximately 30 days post trauma. In this episode it was a general soreness as opposed to a specific area with sharp/dull pain. I even believe that the one time pain episode may have been hypersensitivity due to my awareness of Peyronies Disease. Aside from this, no other physical pain. The psychological pain has been quite traumatic. I won't go into this now as it would consume a great deal of space, time & tears.

I went to the internet and hunted down whom I believed to be the best, Dr. Martin Gelbard in beautiful downtown Burbank Ca. Check out his credentials at this site, he's done his homework.

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

This guy has written volumes of research papers on the subject and I figured this was the Doc. for me. He's a great guy, friendly, knowledgeable, I truly believe that hecares about his patients. He answered all my questions, has a nice staff and even gave me a free sample of Viagra. Sitting across the desk from him and so I could view it correctly, he drew me a diagram of a Peyronies penis, upside down! Extraordinary! Unfortuately, at the end of the day I went home with only a script for Colchicine, Vit-E & Viagra. He apparently was fresh out of cures for my Peyronies condition.

One very important highlight! What I did get out of this was the knowledge that when I pass the 18 month stage and still have my Peyronies Disease curve, I'll know that I've seen the best and won't have to look back, wishing I had done it differently.

Treatments:

800 IU's Vitamin E. I cut back and continue today with 400 IU's after readings some recent studies regarding heart problems with elevated levels of V-E.

Colchicine 3X daily: Diarrhea 20 X daily, discontinued after 30 days.

Viagra: First tab took me back to the 60's with the "Blue Haze" effect. It was pretty farout and groovy at first, but I ended up on a bummer trip, discontinued.

VED, Soma Correct, Have been on the program for about three weeks now, no signs of improvment yet however, the program is 26 weeks and I'm optimistic.
(Thanks "OLD MAN")


Psychological Stages: Anger, denial, really pissed off, acceptance, pissed off, denial, acceptance, really pissed off again, denial. I believe today I'm still really pissed off.

Observable changes: None, It's what I would describe as stable. I am in relatively the same condition as when I first noticed I had it.

Future plans: Stay on this forum I suppose for the remainder of my life. Hopefully something will become available to improve my condition and I will be able to share my progres, provide hope and some workable treatment with others.
Title: bob
Post by: Old Forum on August 20, 2005, 09:02:46 PM
bob        Posted: Wed Jul 27, 2005          2:30 pm   

Age - 49

Age at onset of Peyronies Disease -  48.5 or I have had Peyronies Disease for 9 months.

Very First Symptoms: I noticed a slight ache after sex. On the next occasion - about two weeks later, I must admit! - the ache was more acute. I was in the bathroom cleaning myself up and I felt down where the pain is, and discovered, to my horror, a lump. I mentioned it to my wife, who said I should get it checked immediately. I went to a local urologist a week and a half later.

I do recall, however, that in early 2000 I went to a urologist (not the same guy as in 2004) to have a tiny bump (smaller than a pinhead) checked on my mid-penis. At the same time I had a really uncomfortable test done to diagnose what my wife thought was a "dribbling" problem. (They put a catheter in my urethra and fed it a water solution for an hour. The urologist diagnosed nothing amiss, and in fact I remember him saying "you're lucky you don't have Peyronie's Disease.")


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

Before and after my appointment with the urologist, I began researching my ailment. I went on Yahoo at work and typed "painful penis" and "bent penis" in the search function, and pretty soon came to the conclusion that I had Peyronies Disease. Soon after I visited the urologist (who indicated that I should take vitamin E and may want to use a VED after my condition stabilized) I learned of the APDA site and signed up. Its more vocal leaders urged me to go for a consult with Dr. Mulhall in NYC, which I did on Jan. 25. A month later I returned for a penile sonogram.

At the outset I had about a 30 degree curvature and a buckling problem. I never had what I would call agonizing pain, but it was noticeable - particularly during sexual activity. I also lost about an inche, but no girth loss. I also had mild ED - something I was reluctant to admit, but was unmistakable considering I required two injections for Dr. Mulhall's sonogram. I went home with a sample pack of Viagra, which I didn't use until recently and discovered that they actually gave me 100 mg. pills.

I recently had the last of six verapamil injections. Incidentally, via the APDA I began corresponding with another Peyronies Disease patient who decided to go to Dr. Mulhall as well. We also scheduled several of our appointments to coincide. It helps a great deal to talk to someone about this - and not just over the internet. In terms of psychology, I don't get angry about Peyronies Disease - but I do find it to be a depressing fact of my life. It's right up there with middle age, high blood pressure, deceased or infirm parents, and job loss/age discrimination.

Where I am today, future plans:

I look at my treatment as damage control. I'm in a wait-and-see mode. My follow-up visit with Dr. Mulhall will be in October, which will involve another round of injections with an erection agent - that was the worst part of my treatment. Then they will eyeball "the results" - no sonogram this time. (I plan to stop at a local newstand for some "inspirational literature." It will give me something to look forward to about the test, and maybe, I won't need two injections this time!) I also plan to ask Dr. M for an Rx for a VED, because unlike verapamil injections, VED consumers seem pleased with their results.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: kbmw on August 22, 2005, 04:53:18 PM
Age – 58 in 2005

Age at onset of Peyronies Disease – 55 in 2002

Very First Symptoms – Lateral curvature to the left. Sudden onset with no known precipitating factors. The bend is 90 degrees and has never changed.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes
The onset was alarming. I made an appointment with my GP who listened to my complaint and referred me to an Urologist. The Uro performed a physical exam and noted the hard plaque. I have no recollection of any pain. It was about 2 months between onset and the beginning of Verapamil injections. The Doctor claimed a personal cure/improvement rate of 85%. I doubt that is accurate. I began the injections with one syringe, three sticks and no anesthesia, twice monthly. It was very, very painful. I continued treatment for two years and at the end I was getting 2 syringes once a week. I now know that the injections should have stopped early on. The plaque seemed static during treatment. It was round, toward the base and about the size of a nickel. The plaque is now at its smallest and elongated. I wonder if that is scaring from the injections. I also used vitamin E.

Where I am today, future plans
I am very skeptical regarding available treatment. Urology clings to tired treatments that offer little better hope for improvement than the chance of spontaneous remission. I check the Peyronies Disease boards with the hope of learning of a break through and to monitor surgical cases. I myself am not willing to do that yet. I miss not having the ability to have sex and I am pretty much resigned to the probability that this will be so for the rest of my life.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Michael on August 23, 2005, 04:31:17 PM
Age -  53 in 2005

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -  53 - just five months ago

Very First Symptoms-- Very slowly developing ED for the last 6 years may, in hindsight, have been telling me something.  Got to the point maybe 8 months ago I realized that Viagra 50 mg was not doing any good-- could not get a full erection; could not sustain one through intercourse; and seemed to be 30% smaller than normal, which I ascribed to not getting fully erect -- so I asked my Dr to go to 100 mg.  Before I tried the first one, I woke one morning with that pleasant feeling, reached down, and... my 2/3 erection hinged in half about 1" from the base.  Sideways, to the left.  I thought it was broken, but could not identify how or when.  No pain... just hinged, with a slight waist at the hinge.  I don't have any nodes or BBs or plaques on my penis that I can detect, but at the base, if I dig hard, it feels as if there is calcification.  But that might be my imagination...

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -- I waited about two months to go to a Uro, hoping something would happen and it would improve. I had finally Googled "Broken Penis" and got enough info to get me to make an appt.  He injected me, played around, pronounced that I had Peyronies Disease; told me to take Vit E and wait a year, at which time surgery and an implant might be possible if it had not improved.  Now, THAT is a bleak, depressing picture.   After being stunned for some weeks, I started looking for info on the web, and finally found this forum.  Now I know there are many options other than vit E then straight to an implant...  I'm close enough to SF to try to get in to see Dr Lue, but I have not made that call yet.  I don't know why... still stunned, I guess.

Where I am today, future plans... Still trying to wrap my mind around this.  Feeling kind of lost... I manage people for a living, and make decisions day in and day out... and I feel lost.  Very weird...
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: nick on August 23, 2005, 05:13:20 PM
Age: 34
Age at onset: about 31 1/2
My symptoms were sudden as my condition came on after an injury. I was , well having sex. She zigged and I zagged and snap, crackle, pop. I was in pain for a couple weeks. About 2 weeks later we try to do it again. You guessed it major pain and about a 40 degree bend. Day by day and week by week the condition worsened to about a 65 degree bend to the left. Still with major pain. The uro has offered only this advise. Take Advil and Vit E. Everything I have asked him he feels "could work, If you're careful". It from day 1 has been waiting for my condition to stabalize, because he feels that surgery is the only option.

Progression, Treatment - Over the last 2 1/2 years I have tried all kinds of things. Vit E and advil, potaba, thackers formula (dmso,apple cider vin. and castor oil), emu oil, copper peptides, ben gay, stretching, ved, every vit known to man, bee propolis, pain patches, a whole bunch of herbs, sqeezing the crap out of the plaques, the full range of enzyems papain, bromelain, lumbrokinase, nattokinse, serrapeptase  , as well as full range enzyme blends. I could go on and on. I starting taking a product called Neprinol, it was expensive as heck (for me) but I firged why not. I strted taking it a good multi V with light ved use. After 2 months I had a rection in curve (only about 5 degrees but huge to me) a total redution in pain. Some of the small plaque nodules were gone. The changes slowed down so at that point I started to wonder if the changes were from what I was doing or just nature running its course. Si I stopped everything for 2 months. In that  time the curve has worsened, the plaque sizes have increased and the pain is back with a vengance. So I am back to what I was doing 2 moths ago. I believe firmly that there is something to enzyme therapy based on this brutal test.
Title: Re: Our Histories - Modify
Post by: SteveW on October 04, 2005, 09:40:35 PM
Age - 51

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 51.  I first noticed a change in late July and was formally diagnosed in September.

Very First Symptoms -At first, I noticed just a very small "hardness" about 1/3 of the way down my penis.  I was mildly concerned, but not freaked out.  I kept checking and feeling.  It seemed "stable" and had no affect on my erections or performance.  In late August, I literally woke up one morning and the "mass" felt larger, over the next week or so, the plaque seemed to grow by the hour.   In just a few days, I had a bend just short of 90 degrees, pain (some days quite severe) and a huge "hourglass" shape to my penis and a "plate" as wide as my penis and extending down almost the entire top side from just short of the base, to almost the head. Suddenly, in a matter of a few days, I lost virtually half of my girth, in an area roughly covering the center third of my  length.  I got an appt. with Primary Care Dr., whom is a complete schmuck and has the bedside manner of a Nazi.  He grabbed my penis and stated that I had a disease, called Peyronie's and would probably eventually and completely lose function and there wasn't anything to correct it.  NOW I am freaked out! and sat in the truck after the appointment shaking and sweating.  Pretty sure my life was over.  I finally gathered my wits, marched back into the office and  I demanded a referral and went to see the Uro (whom I really like) a few days later.  He did a quick exam, explained the disease, it's progression and the potential treatments.  He wanted to start injections ASAP, feeling that the sooner we began, the better the odds of results.  I have only had one injection appointment (which I have related elsewhere on the site) and am "hoping for the best."

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - Currently one injection, going to complete the entire series.  Psychologically?  Has me all f'd up, to the point of dreading the next erection.  No changes to date and none expected or hoped for after just one treatment.

Where I am today, future plans - Next appoint for shots tomorrow...and have a written list of questions for the Dr....including VED, Vit E, Viagra treatment, frequency of injections and ANY non surgical options.  He has mentioned surgery, but clearly states that "cutting up my dick" is an absolute last resort.

Where I am today, Part 2 (5/25/06)-After 9-10 VI's, I have had some slight, very slight improvement to my bend.  I went from a 90 degree curve to maybe 80 degrees.  Like Hawk said elsewhere, "was it the result of the treatment" or "natural improvement?"  Can't answer that.  My doc and I agreed to halt injections after the first series (Jan '06, I think) and have been "stable" since.  Until recently.  Pain when erect has returned, but not to the degree I experienced initially.  Mass, which is "like a plate" quoting my doc still covers basically the entire top side of my penis.  It's as wide as my penis at the base and in a very rough and irregular shape (much like a long arrow head) stops just short of my head.  The shape seems to be changing somewhat, but not shrinking or reducing.  My shrinkage in the center third or so of my penis, remains at about 50% of my original girth.  Hourglass is putting it mildly.  Hope any of this is helpful or informative to anyone else.

Part 3 (6/8/06)  I ordered and just ( 2 days ago) received my "traction device".  These ugly, bizare looking contraptions are primarily marketed under the guise of penis size increase miracles.  However, they are being used quite extensively in Europe and are being researched in the US as a beneficial treatment for Peyronies Disease (even if limited) in the US.  After the shots, the topical and all the vitamins I decided...what the hell.  My doc said it "couldn't hurt if administered carefully" so here I am.  If it serves to just slightly improve my wasting and 90 degree curve, it is in my humble opinion, worth a shot.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: lost2 on October 29, 2005, 05:58:29 PM
History lost2
Age 60

Age of onset 59  2004 july

First,I am only on a computer because of Peyronies Disease. This Is My First forum,I am a technophobe. That said here goes.

My Peyronies Disease started during sex, I was withdrawing and looked down and noticed that my erect penis was bent down. If you took a papertowel tube and bent it down about 45 degrees 2 inches from the end thats what it looked like. If it were a garden hose it would have restricted the flow. I didn't notice any pain,suprisingly. It scared the heck out of me but I thought maybe I was just a little too low during sex as I was  in back of my partner and although I had never observed this before I didn't think too much more about it. I thought ...hey I was too low and I bent it.   A few days later I started feeling like I was sitting on a golfball or a glass egg right where the prostate is located. Also I felt a pain inside my penis  just behind the glans. I got scared and went to emergency for treatment.  The doctor said I has prostatitus and gave me antibiotics and  motrin for the pain.  A week later I was back,different doctor another prostate exam and a referrel to a urologist. Long story short he thought I had Prostate cancer at first but soon came to believe Peyronies Disease.  I still had a lot of pain in my penis and still felt like I was sitting on something. I  believe that the golf ball feeling has something to do with the onset of Peyronies Disease in my case, also I have no signs of any plaque or nodules or anything that the doctor  or I can find.  I had a MRI of the penis and he said it showed nothing out of the ordinary but I don't believe he actually looked at it himself,but relied on a radiologists reading. I didn't see it.  Then he sent me to a doctor for pain management.  I hurt so bad that Sometimes I don't get dressed or go out because of it.  The pain Doc gave me vicodin for the pain but it seemed to ah,  make my flaccid state more full so after taking a look for himself to confirm this he put me on twenty mg oxycontin three times a day. It worked fine but after four months or so he talked to the urologist and was told that maybe I didn't have Peyronies Disease after all. You see he never gave me the injections to cause an erection and  so started to believe that maybe I invented everything so I could take meds.  Whew! Anyway the uro  waited three months before telling me about potaba.  So today fourteen months later I have a penis that bends like a potato chip, hurts like hell,  is missing two inches in length and is so narrow that  I no longer recognize it . My wife says It doesn't bother her, in fact says its a little safer for her.  Who knows?  All I know is its harder to work with. If I wasn't already married I doubt I would ever date again. I feel so bad for the younger guys. One more  thing, the uro mentioned many times what a simple procedure the surgery is to take the up curve out. He said he  had performed many and also said the pain would go away.  I will wait and see about that but must find a doctor that believes his patient.

                                           


     
Title: 54 and wanting a bit more
Post by: bentley on December 12, 2005, 05:45:52 PM
AGE:  I will be 54 at the beginning of 2006 and

AGE AT ONSET: I got bent out of shape in October of 2003.  

SYMPTOMS: I was pretty used to daily doses of two-fisted whiskey sex even after 25 years of marriage. I had always resolved that anything in life was tolerable if you had a full head of hair and a functional tool out in front.  I think I may be thinning a bit too.
My wife and I had a difference of opinion one October Day that I was unaware of until I got back from work and found a note making reference to the poorer of my attributes.  All of her things seemed to be moved out and so I was out of surprise when the process server showed up at the door with divorce papers.
We put things back together over the next three months, but, about two weeks into my celibacy, I woke up with a pig's tail where my dick had been.
At first I thought that I had accidentally put a tourniquet on overnight, but that was not the case.

TREATMENTS
: I went to the Top Uro in the area according to my MD friends who put his hand on my tool, then his finger up my ass, while reciting the history of Peyronies Disease. ( I have since read that same history in pro haec verba from every med site I have visited looking for help).
He looked up into space at about a 45 degree upward stare and confidently prescribed 400 IU of vitamin E for 6 months and handed me a fistful of Levitra samples.
I had some difficulty breaking the news to my spouse. She had a recollection of some romping where I came out all the way and bent me in half when I missed on the way back in. I think she may be right about that.
I spoke to some md's that I could talk shop with. They were sympathetic but I could tell that there was no cutting edge to cure the problem. They gave my handfuls of Viagra
I went through three tubes of Topical Verapamil, which incidentally can be compounded for a tenth of the cost if the prescription says " use as directed" rather than" apply as directed for treatment of Peyronies Disease"
I didn't know that until after I bought the three tubes to get a discount. No ED pills from this outfit. .  it was more like a screwing without a kiss, but I digress.
I recently went through 7 bi-monthly injections of verapamil (10mg).  This softened the plaque and took care of the acute bend and narrowing but there is still a curve. He gave me handfuls of Cialis
Where I am at right now is to find the doctor that invented the operations to excise the plaque.  I am not afraid of Peyronies Disease, ED, or anything else.  I just don't know what to do with all the hard-on pills
Summer of 2004 I came up with a vocal cord cancer that was cured by 61/2 weeks of External beam radiation which put Peyronies Disease into a different perspective for me.

PSYCHONEGATIVITYNESS
:  I am embarrassed, my confidence is changed, there has been no good come to me and my Peyronies Disease, except that I am the proud owner of a recent model Bentley.  If I could give it away, I would settle for a Saab. I also have a box full of ED pills
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: irish on December 14, 2005, 06:17:43 PM
Hi, I am 53 years old, and have Peyronies Disease for 14 months now.  My regular doctor affirmed my diagnosis one month after the onset and at that time I had plaque around 1/3 of my penis about half way down the shaft.  I was prescribed vitamin E.
At first the pain was pretty bad, but got better after 6 or 7 months.  funtions were fairly normal, excluding the shortness and bend.
I saw a specialist at month 3 and at that time it had spread around the entire penis, leaving a 30 degree bend.  It was much closer to my body now and I was one inch shorter.  He suggested surgery after it settled down. 
It stopped hurting and settled down at month 10, but now the plaque was way inside my body and I was 2 inches shorter.  I tries 6 times to get an appointment with the specialist (it takes me 2 days to travel to see him), and Still to date have not been able to find him available, as he has a practice in two different cities and surgery takes alot of his time I guess.  I did write him a letter and got a response.  He suggests surgery this coming spring.
Now I cannot even feel the plaque, as it has sunk deep inside me.  I am concerned that surgery may not be possible now.
I also have had alot of pain in my knees starting 3 months after getting Peyronies Disease, followed now by pain in my legs, feet, arms and fingers.  I went to a joint speciallist and he said he could find nothing wrong with my knees.  I am going to have my fingers checked in two weeks as they are getting real bad and I now feel so sluggish as well.  These are probably not related to Peyronies Disease, But just wondered if anyone else has had these symptoms.
I am barely coping with all this, as is my wife of 29 years.  We try to have a normal relationship, but I am so worried I will loose her that it shows terribly.  I sure feel bad about this whole Peyronies Disease thing. 
Thanks for having this forum...this seems to be the best one.   
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: roadblock on December 17, 2005, 10:32:54 PM
Age - 29

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -  Hard to say...about 15 months ago I was having occasional pain near the base and a painful stiffness just proximal to the glans on the dorsum of the penis. I was seen by a urologist at the time who was unimpressed and made no recommendations. Two months ago I was seen by a urologist after 2-3 months of the same painful stiffness.

Very First Symptoms- In hindsight, the first symptoms were a painful stiffness located on top of the penis just proximal to the glans. What I mean by "painful stiffness" is that as I would begin to obtain an erection, there would be soreness and what felt like a resistance to expansion.
  Approximately three months ago I began to experience soreness both at rest and with erections in two fixed spots with areas of lesser soreness in other areas. I also began to notice "waisting" in the mid-third of the shaft which to this day disappears once a full erection is achieved. In addition, in one area I have been experiencing pain near the base of the penis there is a 20-25 degree curve which has appeared over the course of about the past 6 weeks. There are one or two bb-sized nodules near the glans, but no other obvious plaques. There is a component of ED but I am able to achieve erection but it dissipates more easily without stimulation. I believe that this might be in part due to pain with erection but maybe even moreso to the psychological distress associated with the problem.
  I should probably add that I believe that there have been a few traumatic events that did result in immediate pain of short duration during intercourse that might be of consequence.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I have seen one urologist after the onset of the most recent symptoms and he has me on Vitamin E.  I use NSAIDs for pain relief but am careful to not overdo them because 1) they only offer moderate relief (which is better than nothing) and 2) I'm well aware of the long-term consequences in terms of renal function as well as gastric irritation.
  In addition to these two points, the pain itself is only severe in that it reminds me of the problem I have. I never could have imagined the psychological stress that this disease would have on me.  It is hard to imagine a worse set of circumstances. It is unlike any other unfortunate medical problem in that you can't just explain to people why you seem down or why you don't feel very social.  In my case there is constant pain which serves as a persistent reminder of my reality, and it has had a severely negative impact on my quality of life. And the uncertainty of what the course of the disease will be might be the most difficult factor, as it keeps me constantly searching for information.

Where I am today, future plans - Right now, I'm continuing with the vitamin E and waiting to see how things progress. I have an appointment with my urologist in one month and I am going to request a referral to a Peyronies Disease specialist to schedule an appointment. In the meantime, I'm focused on reminding myself that I'm still the same person I was before the disease and that despite the amount of time I spend dwelling on my problem nobody views me any differently than they did before. My wife, my urologist and I are the only three people aware of the problem I'm having as it really does not impact my relationship with anyone else!
  In addition, it seems as if my problem is not nearly as severe as many of the cases I have read about thus far. Being 29 and only a few months into the process, this may change dramatically. With this in mind, I have a few questions for those of you who have been dealing with this longer than I have:


Guess that is all for now...

headers changed to bold to help a brandnew member - Hawk
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: davey17 on January 02, 2006, 04:08:23 AM
Hello,
i really appreciate your website and look forward to reading more on here -- i put a little of my history below, i added to an email i wrote to a docter recently so i know its long and a bit wordy esp for a 1st post but read what you like and feel free to comment on anything or not -- thanks

About 2 years ago during normal masterbation i heard what sounded like a small pop, similiar to when u crack a knuckle on your hand..for a while before this i felt a sort of pulling like sensation from approximately my right groin area all the way down to my right foot, like a cord that had a little tension...since then i have noticed that my penis bends to the left,,,i am not sure if it is more of a "pulling" to the left or an actual bend ,,,i believe it started as more of a pulling and now it has a bend when erect,,,

It has been like this for some time now and i dont think it is getting any worse...it has always curved upward but now it is upward and to the left...also it seems like the "base" maybe a little weaker than in the past,,,its like it comes out of my body towards the left and not straight out ,,,although if i were to insert it into a woman, it seems straight,,,maybe just a little weaker when she is on top making me self conscious about her being on top -- again not sure if it is more psychological or physical...

Prior to all this i had a normal sex life and i have had normal sex since,,,i am 30 years old and i have also been treated for depression before any of this and have at times been unable to maintain an erection with a partner,,,although this was usually when i wasnt feeling comfortable or calm --- when i was with the same person for a while everything would be fine...

I dont know how severe my problem is,,,sometimes when i look at pics of erect penises,,,,there seems to be some that bend right or left or up and down...i am concerened that maybe the problem"bend" will get worse -- its at the base and about 30 degrees if just left completely natural(however if i were to hold it up like for a woman on top position it or insert it in a missionary position it would look straight -- can peyronies just simply be straighened out by moving or insertion?) -...theres not really any pain but i do sometimes feel some sort of "tension" or pulling when i have an erection,,its nothing really bad and hard to describe,,,just a feeling that i didnt have years ago..

i also seem to lose my erection sometimes but i am unable to tell if it is bec my penis is bent or if it is psychological,,like it has been in the past -- due to a severe breakup w/my gf about a year ago(nothing to do with the bend) i only had sex since then once and it was ok but now i am obsessing about this and am concenrened how everything will go when i have sex w/a partner again -- gain not sure if it will be a mental or physical problem... - i do have some psychosis and am quite anxiety ridden/paranoid and tend to make problems catastrophic so i am unsure if that is what i am doing here -- i suppose my major concern is if it gets worse --- i also have been getting numbness in my hands and feet and am afraid i may have some circulation problem -- i am planning on seeing a docter soon for a full medical where i am sure he will refer me to a urologist...



often i will wake up with a strong erection and sometimes can have pleasurable masterbation and other times i start concentrating and thinking about the bend in my penis and then i will lose my erection,,,i did a lot of research online and some stuff helpful and other stuff scary

do you think i should consider surgery?
do you think this is a big problem?

the bend doesnt prevent me from haveing sex but is hurting my confidence and i am not sure what to do??

do you think such a bend could cause erection problems/maintaing erections now or in the future??

any help would be very appreciated as i dont have health insurance and it is not easy to talk to a docter about all this..

if you would like any more info,,,please feel free to ask...

thanks a lot

Dave
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Rock on January 04, 2006, 10:58:11 PM
Age - 21

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 19

Very First Symptoms - Pain with erection/ejaculation

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - Thin formation to thick formation of tissue that runs the length of the left corpus cavernosum and dorsal vein of the penis.

Where I am today, future plans - I'm not sure if I even have Peyronie's or not any more, even though I've been diagnosed. I'm in pain now and I'm not sure where to go next. Here's my story:

I've been through a lot in the last 3 years, but I'll try to keep my story as brief as possible. I had surgery for a left varicocele in May 2003. I had recurring pain in the testes afterwards, as well as minor soreness in the penis. I went to see my urologist many times after the surgery, and he said to just wait and see. I went to see another urologist about a year after the first surgery to see what he thought. He ordered an ultrasound and it turned out I still had the varicocele. I foolishly decided to go through with the surgery yet again in August 2004. After this surgery, the pain in my testes remained the same, and the pain in my penis continued to worsen, particularly after ejaculation. I stopped masturbating for 3 months, but the pain still came back.

I noticed a thin band of tissue running through the corpus cavernosum in the left side of my penis, as well as another similar in the dorsal vein running across the top. The urologist that did the second surgery was giving me the same deal as the first, the just wait and see approach. So, I went to another urologist. He diagnosed me with peyronie's disease and put me on Potaba, 500 mg, twice a day, about an eighth of the normal dose. I'm still taking it, even though I doubt it's doing anything, as it's been almost a year.

The pain continued to worsen after that, still mainly after ejaculation, and my erections now hurt for a day or two afterwards and it is hard to walk long distances without pain if I have ejaculated recently. The thin band of tissue running through the left side also increased in size over time, but it doesn't seem to expand if I refrain from ejaculation. I can get close to ejaculation and if I stop, there is no pain afterwards. The pain is only intense and unbearable from about an hour after ejaculation to anywhere from a few hours to a day or so, and it slowly subsides over a few days. The pain only occurs if the muscles involved with ejaculation are activated. I've studied some anatomy but I really don't understand the muscular system of that area, but I believe it may be the root of the problem. Also, I have noticed many superficial veins showing themselves on the surface of my penis after ejaculation, and they don't go away, they just keep building on top of one another. Also, the pain is worst in the dorsal vein area, so my best guess is that the problem is vascular in nature. The pain is best described as an intense dull soreness, and it kind of feels as though the flow of blood may be obstructed. At this point however, I really don't think I have peyronie's disease, as my penis isn't bent during erection, and the hard tissue isn't organized into a bead as in most peyronie's cases.

I did a lot of research on Peyronie's and similar conditions, and over the summer of 2005, I stumbled upon a web site dedicated to the treatment of peyronie's disease, www.peyronies-disease-help.com. Since I found the site, I've been using vitamin E, Vitamin C, Sulfur, Quercetin, L-Carnitine, Nattokinase, and Fibrozym (an enzyme complex containing serrapeptase). I've also more recently started practicing Nei Gung and Kegel exercises. In September and October, I started seeing different specialists to try and get another point of view, including a Naturopath doctor, a vascular surgeon, and visceral manipulation therapist. There has been an improvement in the scar tissue of the initial varicocelectomy incisions, but nothing as far as the penile pain goes.

I recently took a trip to Baltimore to see a urologist there. He told me everything I've been doing probably won't help, and that I should just ejaculate as much as possible and endure the pain, and my symptoms will go away. I am worried about trying this, and I'm afraid I will make the problem far worse and beyond repair if it isn't already. I haven't ejaculated in 2 months as of this post, and my erections are a bit stronger than 2 months ago, but that's about it.

After seeing 9 urologists and several other specialists, and doing a lot of independent research, I haven't found out what is wrong with me. The closest things I have found are Peyronie's disease, Fibrosis, thrombosis, and phlebitis. I'm 21 now, I'm scared as hell, and I don't know where to turn. If anyone here has any suggestions, no matter how farfetched, I would really like to hear them. Obviously I won't regard anything as official medical advice, but I would still like to hear if anyone else has ever encountered this problem or has any theories on what might be happening. I appreciate any suggestions, thanks in advance.


   
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: emersonchief on February 09, 2006, 07:31:51 PM
AGE:    60

AGE AT ONSET OF Peyronies Disease:    58

VERY FIRST SIGNS OF Peyronies Disease: I first noticed it when I had pain in the shaft of my penis and I found a round nodule about the size of a dime about midway of the shaft.

Peyronies Disease PROGRESSION:  I went to my GP after about a month when the pain nor the nodule went away.  In fact the nodule was growing.  He did not say what he thought it was and sent me to a Urologist who comfirmed what I had found out on the web that it was Peyronies Disease.  He said there was no cure but that treatment with Vitamin E might help and that there was a treatment with Transdermal Veraporimil seemed to be working, but it was expensive.  He gave me a prescription and I used it for 9 months.  At this stage I had no noticeable curvature but as the nodules grew the curvature began.  The nodule grew to about the size of a quarter or larger, covering the entire width of the penis when flacid.  After about 2 months of the TV treatment the pain begin to leave and the nodule began to shrink.  I had quit taking gludosomine/chondroitin which I had been taking for 3 or 4 years for knee and sholder pain when the PDLabs who supplied the TV said that Peyronies Disease was a side effect of G/C.  After the 9 months the Urologist would not refill the RX and by this time I was pain free, the nodule about the size of a dime or smaller and about a 10 degree upward curveature.  As time has passed the curve has not gotten any worse and the nodule has shrunk and progressively moved up the shaft to almost the base and is now about the size of a large BB.

WHERE I AM TODAY: Today my wife and I enjoy a good sex life and I am still pain free although where the nodule is the penis wants to buckle at that point.  I do not plan any other treatment at this point but live in fear of it returning at some point
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: herk on February 26, 2006, 04:08:06 PM
Herk,

Age - 59

Age at onset of Peyronies Disease - 58

Very First Symptoms - Big upward banana curve, almost touching belly. Began a few days after my uro performed a cystoscopy. During the cysto, I felt a strange thud as he manouvered the scope up my urethra. Naturally, he thinks the timing of Peyronies Disease and the cysto is quite a strange coincidence.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -
- sharp upward curvature from the beginning
- a little pain and discomfort with erections for first few weeks, but no pain since
- visited uro within a couple weeks of the cysto procedure
- plaque seems to be in a thin band along the entire lenght of the top of penis
- frequently wake up around 4:30 am with a very firm erection - and a sleeping wife (what a waste)
- began to take 400 units of Vitamin E seven months ago - no changes
- psychologically very frustrated and angry

Where I am today, future plans -
- very angry with the condition
- sex life has deteriorated to quickies and only a few passionate encounters (OK - age may be involved, but I still want more passion)
- plans are to monitor, study, read, and eventually revisit my uro
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: couldbeworse on April 02, 2006, 06:12:37 PM
Age - 31

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - 29

Very First Symptoms - sharp pain, most likely wound from rough intercourse.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - slight hourglass and narrow base, slight left curve ~20°, slight "shrinkage". 

Where I am today, future plans - Currently seeing expert in Peyronies Disease.  We're in wait and see mode.  I eat 400 IU vitamin E daily.  If it gets worse he recommends injections of Interferon (?).

As far as I'm concerned the psychological impact of Peyronies Disease is greater than the pain or dysfunction.  I see a counselor to help me learn to cope.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: kenm on June 07, 2006, 08:18:08 PM
I am a 44 year old md in fl and have had the disease for a year and a half.  There are some good days and some bad days.  One of the wierdest things is not being able to get function on the erectile drugs that Dr. hakim gave me.  He told me I have ED.  Well I began using cialis and used it until I decided that it was physically impossible to get that much of a reaction from the drug that quickly and so I began to back down the dose of the drug thingking that maybe I really didnt need that high a dose and I didnt want to be erect for a week at a time anyway which I essentially was.  I didnt like the flushing either.  I was basically using it as a crutch.  Well one day there was not the opportunity to use it.  I was scared but went with it.  I have been fine ever since on no drug.  I also have called the Auxilium rep and have my name on a list for the phase 2b or 3 trial.  I actually think most urologists believe it be the real deal.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: zigwyth on June 08, 2006, 05:46:08 PM
Zigwyth

1) Age:47

2) Peyronies Disease: about 7 months-Dec 05

3) 1st Symptoms: Plaque about 3/4" in size at lower right base

4) Progression at Onset: Indentation(Extreme Hourglass shape) Approx. 1 1/2" loss in erectile state. 1/4" loss in girth. Major Pain

5) Treatment(s): Vit E 400 units, Transdermal Verapamil 15%, Infrared Heat therapy, will start VED use soon

6) Doctors: One GP. Three Urologists

7) Psychological stages:  Fear, shock, frustration, depression, anger, depression(almost suicidal), from extreme extrovert to introvert, regret, acceptance, and finally hopeful and now positive, upbeat most days with occassional downers until I psyche myself out.

8) Changes: pain has subsided.somedays erections seem to be a little fuller.

9) Where I am today: Well, I probably didn't do this thing right, but Screw it!Nothing but a thing.  ::)I'm not sure why I waited to do this other than procrastination and embarassment. :-[A brief history. I had a Lower Right Inguinal Hernia operation(mesh) performed in Nov.2005. The surgeon who cut on me screwed me up real bad.  >:(Loss 2 pints of blood,became anemic, 10" Black/Blue Bruise across abdomen, Blood clots near appendix and scrotum area. Penis/scrotum totally Black.Infections. etc. Was rushed to emergency room after I fell unconscience inside a pharmacy.  :oThis was after the surgeon had released me to go back to work after only 2 weeks after surgery. One month later, I had wondered if I could even get an erection and ejaculate again because of the condition of the groin area. I commenced in masturbation and within 1 minute I felt and heard a loud POP. I immediately gave up out of fear. Within 2 days the plaque had formed. Within 1 week the hourglass shape had formed. I couldn't believe my eyes on the shape and loss of size of Sir Lancelot! He was now the Black Knights Squire :DAnyway, after a few Doctor visits with what I felt were either uncaring or unknowledgeable men,I found my present Urologist. Although he admitted he has limited knowledge of the treatments of Peyronies Disease, he has been willing to try anything and everything that we can find out about. I currently am not in a relationship and the thought of not ever being able to please a woman sickens me. I know this has become a psychological issue with me. I am thankful to find this forum and feel confident that each and every one of us will someday be part of a cure for this dreaded Peyronies Disease that I didn't even know existed. We are now Brothers by fate and we will not and shall not give up. EVER!! Zig The Twig

Post formated by Hawk (bold, spacing)
Title: Fighter
Post by: Fighter on June 14, 2006, 11:20:57 AM
Age - 48

I have had Peyronies Disease for: - 10 months

Very First Symptoms - Started one night having sex with my wife and I felt pain during ejaculation. Did not feel any lumps or plaque until 4-5 months later. I think? I did not even know about Peyronies Disease until I went to my Uro for the second time which was 8 months into the disease.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes
-I am currently take TV, ALC (2.5 Grams/day), Vitiamin E (800 I.U./day), and L-Arginine (1 Gram/day). 2 visits to my Uro, Psychologically I have a very supportive wife and it has not affected my mind but it is sure wearing me down because of there is no real understanding of Peyronies Disease in the professional world. Just seems crazy to me that it has been around for so long and there is no real cure for it or for that matter it does not seem to be any closer to a cure in the past um teem years.

Where I am today, future plans - I am in to 2 1/2 months of TV and there seems to very little change except for the pain is more tolerable. No change in curvature (20deg curve to the left) Plaque seems to be the same but somedays it feels better than others. I plan on going to my Uro with in the next couple of weeks and the Calling PDLabs and see what they suggest as far as my TV treatments are concerned.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: PDiddy on June 16, 2006, 02:54:41 PM
Age - 36

I have had Peyronies Disease for - 6 months

Very First Symptoms -Painless BB sized lump on top of shaft just below glans. Extreme pain during some rough sex 1 month after I noticed the lump. Went to the uro and got the grim news. I suspect this caused Peyronies Disease over time.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -I started looking on Google when I noticed the lump. I read about Peyronies Disease and prayed I didn't have it. Well after the painful episode I went to the urologist and he confirmed Peyronies Disease with a simple squeeze examination. I've been on Potaba and Vitamin E 800iu twice daily for almost three months now for the pain. I have a follow up with him in a couple weeks. I'm guessing it's just more Potaba and Vitamin E. I noticed the head has a slight bend to the left and there's an indentation where the plaque is. The bending is minor so far but is more pronounced if I use viagra. No ED problems so far in fact I still wake up in the night erect. Only problem is it feels like a needle is piercing the head (not fun to wake up to).
Pain is the biggest problem but since I'm still in the active stage so I suppose I just need to be patient.


Where I am today, future plans - Went through the same emotions I think everyone else has with this problem. I think about this everyday but try not to dwell on it. My biggest concern is that the pain will never stop and the bending will get worse. But I try to have hope that there will eventually be a cure for this. My wife has been very supportive and that helps but this has taken a heavy psychological toll on me. If things were to stabilize today and just not get any worse I could live with that. I think by talking to people on this site it will also help me deal with the problem.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Douglas on July 04, 2006, 12:00:39 PM

Age - 47

Age at onset of Peyronies Disease - First symptoms noticed January 2006 - six months ago

Very First Symptoms - I detected a small lump on the top of the Penis in January and went to my doctor.  They didn't know what it was and I was referred to a urologist.  He diagnosed peyronies and said there was nothing I could do until the situation reached a steady state and suggested I visit again in November 2006

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - In six months things have moved on.  The plaque is larger, I have a 50-60 degree bend and 'hour glass' hinge.  I cannot get a full erection as the tip of the penis beyond the hinge does not get fully erect.  That which I can manage is easily lost and very painful.  If anything the symptoms are getting progressively worse.

Where I am today, future plans - I've read many postings which talk about contacting a urologist with some peyronies expertise, I have not been able to manage this here in the UK.  If there are any Brits using this site I'd like to share your thoughts.  I'm planning to visit my GP again next week but I fear they don't really have much to offer me.  Currently taking vitamin e without any confidence.  I feel I should be doing more than just waiting but that's all the doc's seem to say.

The long term effects are just beginning to dawn on me and I'm feeling pretty down about it.

Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: WaycoolMick on October 23, 2006, 11:14:16 PM
Age -41

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -approximately 5 months ago discovered a small pea sized lump in the shaft of my penis seemed center dorsal.  At that time there was no curve. Now have a slight curve dimple top third of penis just below glans.

Very First Symptoms -Lump and some tightness when erect.  Felt uncoformtable a little pain but not severe.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -
I attended my GP and she inspected it and said it could be just a mass, Peyronies Disease but I was not erect at any time during the examination.  Upon discovering the mass I immediately began thinking worst case scenario cancer with a penectomy, scary thing finding a lump.  The lump seemed malleable and was not painful when flaccid.  The mass now appears to be harder in texture to me and  I discovered a slight upward bend. The bend is below the glans and sort of what I would call a dimple (start of hourglass??). Peyronies Disease dwells on the mind a bit as I have other things that are problematic in my life.  Fear of ED etc. Hoping it resolves over time.   

Where I am today, future plans - Taking Vitamin E 800 IU per day started when curve/dimple discovered.  Considering VED options,

As I stated the bend is very minor but I felt a slight difference today dread losing length and being deformed. Thanks for making your forum available.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: PJ on October 25, 2006, 10:59:52 AM
Age - 41

Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years -
I have had Peyronie's for 2 and a half years, started when I was 38

Very First Symptoms -The usual injury during rough sex with my wife. No pain or problems for months, then all of a sudden one day a great deal of pain and a lump about the size of a pea at the site of the injury. I saw a urologist who diagnosed peyronies. He asked if I could still have sex, the answer was yes but carefully. He said to take vitamin E and prescribed large doses of Ibuprofen and to come back in 3 months. 3 months later I had an hourglass problem, slight upward bend, and a penis shortened by an inch, though the pain had subsided for the most part. He said to keep taking Vitamin E and explained how there was no scientific treatment. Gave me a pamphlet about the surgery. I figured out for myself that I was not a candidate for a surgery that does not help with an hour glass and would shorten the penis further. Since each visit ran me $300 I was hesitant to return.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -
I did some research on my own. Discovered that there really was very little medical treatment. About 2 years pass with me taking lots of vitamin E and MSM because it couldn't hurt. Saw my doctor one more time in there, when I developed ED past the point of injury. He threw viagra at me which helps. Found this site. Found out there is a lot I didn't know still while I lurked for six months. Progression occurred. The hourglass is pretty much the length of the entire penis which has shortened by 3 inches total now, with scar tissue running the entire length in kind of 'strips' along the top. 3 new pea sized plaques near the base. Sexually functional, but I feel pretty inadequate anymore.
Psychologically, I am having some trouble coping as it is requiring a reevaluation of my sense of self. Hard to put into words really.

Where I am today, future plans -
I am thinking I will try to get ahold of the Soma VD device. Saw my urologist who prescribed the Cialis, pentox, L-arginine combo. I'll give this a try and report back in a few months.

Other data:
My father had severe Dupuytren's contracture, which even after an operation left his hands mostly crippled. Both he and I are prone to keloid scarring as well.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: adam24 on November 17, 2006, 12:16:33 PM
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!
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: IrishB OCD on November 17, 2006, 04:49:18 PM
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!
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: lwmson on December 11, 2006, 12:19:03 AM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: meanmrmustard on March 14, 2007, 08:45:04 AM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Escape on April 19, 2007, 10:48:45 AM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: dahc on April 26, 2007, 07:38:45 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: arnday on May 23, 2007, 10:08:50 AM
Age - 18

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

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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: stashua on May 24, 2007, 07:23:56 PM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: BroWCarey on May 31, 2007, 01:04:36 AM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: deejay on May 31, 2007, 10:35:05 AM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: shrout on June 04, 2007, 02:18:55 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: SombreSoul on June 21, 2007, 06:27:27 AM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Johnny on June 30, 2007, 08:40:25 PM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Jorgesd on July 08, 2007, 11:22:11 PM
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. 

Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: NxNW on August 27, 2007, 07:58:33 PM
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.




Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Ptolemy on November 03, 2007, 05:34:58 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: end_t on December 14, 2007, 03:41:00 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: LWillisjr on April 20, 2008, 09:48:49 PM
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!
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: duenorth on May 08, 2008, 11:34:59 AM
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. 
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: trussin on May 10, 2008, 03:54:25 PM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Aeternus on May 21, 2008, 12:48:42 AM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: sweeper on June 11, 2008, 11:10:32 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: jmaxx on June 29, 2008, 10:03:09 PM
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."
 

Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: joe on July 29, 2008, 07:32:02 PM
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.  :) 
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Lazer on August 26, 2008, 10:53:02 AM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Steve on August 27, 2008, 11:12:06 AM
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.

Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Fred22 on September 12, 2008, 03:57:11 PM
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       
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: crazybrab on October 13, 2008, 07:53:28 PM
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!
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: aerosick on October 27, 2008, 08:12:35 AM
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
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: bent70 on November 01, 2008, 07:43:28 AM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: ox bow on November 05, 2008, 11:06:35 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: newenglandguy on November 06, 2008, 05:55:07 AM
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?
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Old Man on November 06, 2008, 10:23:23 AM
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
Title: Double Eagle - My History
Post by: double eagle on November 24, 2008, 12:15:15 PM
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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Shalomuk on December 11, 2008, 02:02:53 PM
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.
Title: The solver - my history
Post by: The solver on January 07, 2009, 08:21:12 AM
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...  :P

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.
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: alexnden on February 11, 2009, 12:58:06 AM
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.   
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: Mr. Confused on February 21, 2009, 01:03:40 PM
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. ??? ??? ???
Title: Re: Our Histories - Meet the Forum Members, Read our Stories.
Post by: JPRHenry on April 06, 2009, 08:07:35 AM
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

UPDATE:
  March 25, 2010

Last weekend I made my one year, post surgery and last up/back trek to O'Hare, the Blue Line, Rush Medical and back on the same day.   One year already, impossible to imagine.   It is simply amazing how fast my nearly 3 year trek and history has gone and how well it all has come out, even from the darkest days.

My surgery has been deemed a success by both Dr. Levine and me.   In the end,...  although not I-beam straight, I'm very pleased.  Still.... strong erections and minimal loss in length.   Physically,  no disappointments.   Equally and as important, mentally and emotionally, I am "fit" again.  I no longer feel defective and am healthy there as well.  

Again, I can never, never, never thank all of the people and this site enough.   There was never a shortage of support or encouragement.   I consider myself fortunate, lucky and blessed.  The only thing left for me to do is to now return all the same to all of you.   My email "door" is always open, feel free to contact me with any of your questions, concerns or if you just need a shoulder to lean on.  I'm here.  

JP




Title: Re: Our Histories - Meet the Forum Members, Read our Stories. NOT FOR DISCUSSION
Post by: Hunter on June 01, 2009, 02:16:32 PM
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.
Title: Never saw it coming...
Post by: jimifan on August 13, 2009, 12:12:22 AM
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. 
Title: Re: History GaryNC
Post by: GaryNC on November 21, 2009, 02:29:54 PM
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
Title: Re: Our Histories - Meet the Forum Members - ARCHIVE
Post by: hell bent on January 31, 2010, 11:30:14 PM
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

Title: Re: Our Histories - Meet the Forum Members - ARCHIVE
Post by: Blade on February 07, 2010, 03:01:28 AM
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.