Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

ALL Members PLEASE Add a Signature line with age, history etc
PROFILE -> FORUM PROFILE -> SIGNATURE
More instructions here -> Signature Line - History - Peyronies Society Forums

Pages: 1 [2]   Go Down

Author Topic: Our Histories - Meet the Forum Members - ARCHIVE  (Read 60305 times)

0 Members and 1 Guest are viewing this topic.

crazybrab

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 5
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #50 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/Erectile Dysfunction
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 Erectile Dysfunction. With no erections, my prostate became congested. panic, anxiety etc probably triggered my pituitary tumor, and Erectile Dysfunction 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, Erectile Dysfunction/peyronies is "dick-all" of a problem, need to put it in perspective!
Logged

aerosick

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 9
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #51 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
Logged

bent70

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 6
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #52 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. Erectile Dysfunction 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.
Logged

ox bow

  • PDS Newbie
  • *
  • Offline Offline
  • Posts: 1
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #53 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.
Logged

newenglandguy

  • PDS Newbie
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 1
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #54 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?
Logged

Old Man

  • Senior Member - Major Contributor
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2150
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #55 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
Logged
Age 90. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

double eagle

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 11
Double Eagle - My History
« Reply #56 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.
Logged

Shalomuk

  • PDS Newbie
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 3
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #57 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.
Logged

The solver

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 9
The solver - my history
« Reply #58 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 Erectile Dysfunction 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 Erectile Dysfunction 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.
Logged

alexnden

  • PDS Newbie
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 3
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #59 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 Erectile Dysfunction 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.   
Logged

Mr. Confused

  • PDS Newbie
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 1
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #60 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. ??? ??? ???
Logged

JPRHenry

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 17
  • 59 y.o with Peyronies Disease
Re: Our Histories - Meet the Forum Members, Read our Stories.
« Reply #61 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




Logged

Hunter

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 6

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.
Logged

jimifan

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 11
Never saw it coming...
« Reply #63 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 Erectile Dysfunction.  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. 
Logged

GaryNC

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 11
Re: History GaryNC
« Reply #64 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
Logged

hell bent

  • PDS Newbie
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 2
Re: Our Histories - Meet the Forum Members - ARCHIVE
« Reply #65 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
 
 
Logged

Blade

  • Voting Member
  • **
  • Country: sa
  • Offline Offline
  • Gender: Male
  • Posts: 11
Re: Our Histories - Meet the Forum Members - ARCHIVE
« Reply #66 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.
Logged
Pages: 1 [2]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
4 Replies
1410 Views
Last post February 05, 2014, 09:11:41 AM
by NeoV
4 Replies
898 Views
Last post November 07, 2017, 05:19:17 AM
by Paolo
48 Replies
4727 Views
Last post August 13, 2019, 12:38:54 PM
by Hawk