Peyronies' Disease, Tom's Story

Dear Readers:

I've been in touch with a gentleman that I'll call Tom as he has asked me not to use his real name. Tom just got home from the hospital yesterday after having had penile implant surgery on Friday. Tom developed his ED from Peyronies Desease and has graciously given his permission to post his story on this site. With each man's story, all of you out there can receive a sense of what other men have gone through in their struggle with their particular ED. And also how they have reached their personal decision on implant surgery. So a special thank you to Tom, and here is his story.

Bob,
great blog. I have been reading it all day after getting my AMS 700
implanted yesterday. I also had peyronies....not sure why. It just
started at 43 yrs old and kept getting worse every month.
Cialis started to make me
irritable and sleepless, then i finally gave up when tissue shrinkage
started this year. i used to be 4.5 flaccid and 6.5 erect. As of a
few days ago,i was down to 3.75 flaccid and about 6 erect. That cold
shrivel caused me more stress than the lousy erections and the curve!

I have a few questions for you:
when did/how did your peyronies come about? and how did it progess?
How old are you?? Your libido sounds realy good and most guys with
implants are a lot older than me (46) Is it true that ams 700 can
achieve 20% additional length?? where did you hear that? My doc said I
may gain length, but i thought he was just trying to sound positive??

Thanks
Tom


Tom:

I had ED due to Juvenile Diabetes, but developed scarring after thirteen years of injections of caverject, Bi-mix, and Tri-mix. My libido was considerably lower while using injections. Even though I've been injecting several hundreds of thousands of shots of insulin, the experience of possible pain from the injection and having to get up and take the ^$#&&* shot kind of took away the desire where as now, just a few pumps and I'm ready to go. I'm good for once a night. My wife's libido over the years has been much, much higher than mine. It's only with the implant, that my confidence level is really high. Sex is no longer a chore, but much more spontaneous. The AMS 700 Ultrex has the ability to expand upwards of 20% of the length of the cylinder. As Fred attests, and I can attest to, most men may lose some length following surgery due to scarring or from lack of use, contraction of the tissue etc. But over time, the Ultrex puts pressure on the tissues of the penis to stretch in length and what I've heard from other men, their penis grows in length some. During the day, I keep a little tension on my penis by pumping it up a bit to keep things full all day long, but not to the point where it is uncomfortable to bend. I leave it comfortably full. This in effect put some slight pressure on the tissues. Over time, tissues will begin to grow to relieve the pressure on the them. I didn't have much luck either with Viagra and Cialis. Cialis left me with a sour stomach and Viagra gave me a headache and a so so erection. You and your girlfriend are going to love the implant when you get healed up. At 6 weeks, you are healed enough to engage in intercourse, but you need to take it easy at first or you will experience some discomfort in the head of your penis. I'm hitting the 12 week mark and that is about the ideal point in the healing process. Sex becomes very pleasant and enjoyable at this point. Congratulations on the implant. If you ever want to contribute to my blog, I would be very appreciative. You are the first Peyronie's patient that I've heard from who has had the Ultrex implanted and it would greatly benefit others who are walking in your shoes and looking for information to make a decision on the surgery. My eventual goal is to create a website with men's stories filed under Peyronie's, Prostatectomy, Diabetes, and miscellaneous of reason's for their ED and what their experiences with implant surgery has been. I'm also looking for pictures so that men can see what the penis looks like shortly after surgery, through the recovery period, and what the end result looks like. Did you experience much pain after surgery. Your thoughts and feelings on having the surgery and was what you expected. What you are happy about, not happy with. It's your story and I don't want it sugar coated. The men who read my blog are looking for the truth and I've tried to do that. I've also tried very hard to describe my experiences and the response has been overwhelming. I've heard from men from all over the world and I'm just blown away by the outpouring of emotion. So if you would like to help other guys, especially Peyronie's patients, send me from time to time your experiences and if you are comfortable with, include pictures. Many of the men have told me the pictures are invaluable. Hearing a story separately is great. Putting a picture with it is off the charts. This blog that I have started is the only one of its kind anywhere on the internet. It covers a topic that is very difficult for men to contemplate. Implants basically mutilate the penis permanently. And there is no turning back, so men really want to be sure of this before going into this surgery. That was my motivation for creating this blog and eventually, I want to turn it into a permanent website. So Tom, thank you for your email.
Bob

Thanks for your response Bob.

My story and recollection of pain is very fresh as I am still at home recuperating.....I had the surgery Friday afternoon!

I was TOTALLY freaked out about this condition and possible solutions to it. It became a mad obsession for the past 2.5 years. After losing my wife in 2002, I was as healthy and horny as any guy in his early 40's. But within 6 months, I started getting a strange coldness in the tip and left side of my penis.
NOBODY could tell me what it was. Not ONE UROLOGIST ANYWHERE....they all said it was probably mental!

In retrospect, what I think was feeling with the beginning coldness was the beginnings of scar formation from years of competitive biking. A few months after the coldness started, I finally met a beautiful girl and started dating. After the first 2 weeks, I noticed that the coldness problem was now interfering with normal erectile response. So I started occasionally relying on a low dose of cialis....seemed to be a solution for a time.....but within 4 months, this became less reliable and I noticed a shrinking flaccid state and a left curvature starting to develop at low pressure levels of erection. It was then that I first started to worry that my problem could be Peyronie’s Disease.

Despite this presumption, it took me over a year before I travelled to see my first Urologist who specialized in Peyronie’s. Then I travelled some more,....I saw 5 guys around the country who claimed to be specialists in Peyronie’s cases. However, even with this specialty designation, I found most of these guys to be quacks who just wanted to do endless tests before cutting on you in some way or starting you on some bizarre drug cocktail or herbal regimen. Despite what any of them said, my own research was slowly convincing me that the only true reliable cure for the Peyronie’s condition was a penile implant. Most of these docs would not tell you that,....mainly because none of them were implant surgeons! And none of the implant surgeons "specialized" in Peyronie’s because it was such a small subset of the implant market that it was not worth their time......Peyronie’s patients were just another customer to them. It took me 2 years to figure this out.

The story from there is very long and tedious, because changes took place microscopically over the next 2.5 years. Sometimes I actually thought I was getting better,, then it would take a turn for the worse.
Despite what you may read about Peyronie’s running it's course in a year, it’s often is a progressive disease that just keeps getting worse. Fast fwd to 2007 where I found myself this Spring with a constant, noticeable curve while erect, less sensitivity on the left side, unreliable responses to a constant (3x per week) regimen of Cialis (I too hated the side effects) and a flaccid state that was so shriveled, cold, curved and insensitive that I felt feelings of inferiority around other men. It actually affected my ability to sleep, relax, and to just be myself around family, friends and co-workers. I could still have sex, but it was with great anxiety, not as much feelings of pleasure (Cialis makes it harder to orgasm) and a penis that would become embarrassingly small and lifeless just minute’s after intercourse (I had to hide it from her view). My girlfriend was aware of the Peyronie’s problem,, but discouraged me from surgery as most would. She was NOT aware of how much I gulped down drugs and how miserable I was through every day frantically digging in my pockets, worrying about my dwindling flaccid state.

Oddly, my final decision was based not on the desire to be ABLE to have sex (I still could with heavy Cialis) but to ENJOY sex again, enjoy passive intimacy (holding hands, cuddling on the couch, pressing hip to hip while kissing) and to walk around the office, the gym and home feeling like a man again who has not had his penis amputated!

As of right now, I am laying around in great pain, but already satisfied with the feeling of 100% of me restored in my underwear! It is like what I am sure a breast cancer amputee must feel like after getting breast implants. Bob, I even think I am still capable of getting a little hard as I can feel it down there when my girlfriend cuddles with me in her night gown while I am on the couch recuperating....it gets engorged! But best of all, I feel like I finally have something pushing back against all that damned scar tissue that has been slowly and literally squeezing the life out of my penis for the past 3 years.

Even if it shrinks (my doc say he thinks I may actually gain length), even if it has a softer head (it looks and feels good already), even if it has a slight curve (it still does now, uninflated), then that will all be ok, because It feels SOOOOO good to have my normal flaccid size back in my crotch. My state of mind in the past 3 days has been nothing short of remarkable....I am me again!! Even with 4-5 hours sleep from the pain of recovering I am in a great mood, i am joking and confident,......cocky!
Maybe that is where the term comes from?!

I will keep you posted, but for now all i can say is that after obsessing about this decision for over 2 years....all the way up to the moment before they put me under sedation, I have no regrets.

Feel free to use my story, but not my name.

Talk soon,
Tom