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[PJ]

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.

[WaycoolMick]

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.

[not9inches]

I've been reading a lot of posts, and my condition is baffling to me. First of all, my progression has been very, very slow in coming. So much so, I can't really tell how long it's been, or when my  Peyronie’s Disease started. It sort of snuck up on me. I do know for sure that ive noticed it 6 to 8 months ago..maybe more. Ive always had a very slight banana curve...so i really didnt notice untill i was about 30 degress...which is where im at now. And i have no bumps or hardness(that i can detect and have had no trauma). Of course i do have a slight indentation where it bends...this indentation is about one inch from the base of my penis. And seeing how there is this indentation...i need to be careful during sex so as not to make it bend there. As for pain...there is only a slight pain during erections/intercourse, i would describe more as a discomfort more than a pain. Ive been to see two urologists and one said he could feel some hardness ( I sure the hell can't!)

I started taking Vit E of my own accord. Ive been to two urologist and both suggested a wait and see attitude. Neither one offered to x-ray it or anything to actually try and discover what , if any plaque is there. Maybe it doesnt matter anyway as all ive heard is there is no cure anyway.

[Douglas]

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.

[PDiddy]

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.

[Fighter]

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.

[zigwyth]

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.

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)

[kenm]

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.

[couldbeworse]

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.

[herk]

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

[emersonchief]

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

[Rock]

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.


   

[davey17]

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

[roadblock]

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

[irish]

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.   

[bentley]

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

[lost2]

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.

                                           


       

[SteveW]

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.

[nick]

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.

[Michael]

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...

[kbmw]

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.

[Old Forum]

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.

[Old Forum]

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.

[Joshua]

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 -