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]   Go Down

Author Topic: Is Congenital Hourglass Peyronies still Peyronies?  (Read 9124 times)

0 Members and 1 Guest are viewing this topic.

Abelard

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 9
Is Congenital Hourglass Peyronies still Peyronies?
« on: July 19, 2011, 12:44:00 AM »

This is my first post. It means the world to me to be here. I'm thirty years old and I was born with what seems unofficially to be called "hourglass Peyronies." For my entire life my penis has been completely useless. I have every feature of all the variegated assortments of Peyronies, such as, for example, the forty degree upward bend, thick plaque dorsally, and an utterly debilitating band round the base, so penetrating I look as stacked as a two year old when flaccid.
The first doctor I went to was Dr.Gelbard in Burbank, Ca. when I was 18. The two prior urologists I went to were reluctant to believe that I was born with Peyronies, even though I have pictures of me as a four year old with all the visible signs. So by the time I got to Gelbard I had become aware of the pervasive skepticism among urologists, as well as the fact that insurance wouldn't pay for my visits if there had been anything pre-existing. So, I fabricated a story. I proceeded to tell doctors, as well as my father, that I was in a fight, and I was kicked, which caused the trauma, and subsequent condition. This story worked. As a result, I was able to have the Nesbit procedure performed by Gelbard which, as my nightmares foretold, left me even more debilitated than before! Above all, the bend hadn't been fixed at all!!!! It was exactly the same as before! What is more, I was left with huge rock-hard scars at the incision site, and, somehow, my hourglass was worse. So now I have a rock-hard sub-dermal scar, numbness, and I'm nearly impotent. And I was still a teenager, and still a virgin, and still hadn't allowed myself to date because of this!
My life was an insidious descent into psychosis from this point on...
I returned on multiple occasions to Gelbard for help. His apathetic and insipid tone, keeping the visits terse and to the point, left me with heartless, thoughtless suggestions such as, "well, you just have to live with it, so just take Ibuprofin when it hurts," and I was left in the lurch of a gradual dissonance of hope for a healthy sexual life.
My question in this post is whether or not there are others who have a congenital condition of Peyronies with such features as mine, who have found a way to treat such a condition? More specifically, I would love to know if this condition is treated as Peyronies, and is it Peyronies still if one is born with it? Or is it something not clinically recognized?
Logged

GS

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 207
  • GS
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #1 on: July 19, 2011, 09:25:00 AM »

Abelard,

I am not knowledgeable enough to answer any of your questions, but I bet someone here is.  I just wanted to welcome you to our forum and let you know we all feel your pain.

Most of us are oldsters, but there are many young guys like you here and we can all support each other.  Do your best to stay positive and hopefully you can find some of the answers you're looking for.

GS
Logged

restore

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 137
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #2 on: July 19, 2011, 10:58:48 AM »

Abelard,

I think with the oral supplements which are proving to be beneficial, namely pentox, and low-dose daily Cialis, you too can diminish the scarring.  The aggravating thing is that it takes so long.  I am on both if these for about 9 months on pentox and 3 months on Cialis, and the plaques are nearly nonpalpable in the flaccid state.  I still have curvature with erection but improved also.  Take these as a minimum and look toward the future release if Xiaflex which has been shown to dissolve the plaque
I understand a little of the emotional pain you describe, having a botched circumcision at 11 years old.  Much scarring, bleeding with erections, and reduced size because of it. 

My advice is as long as you take positive steps, you will get better. 

I hope someone here can share some of their experience with a congenital condition.

Logged

LWillisjr

  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2905
  • 62 y/o - 10 yrs Peyronies free
    • My Peyronie's Story
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #3 on: July 19, 2011, 09:25:53 PM »

If you are not happy with your original doctor, then find another one. I would strongly encourage you to find a specialist in your area. Perhaps the right answer for you would be an implant. I know it sounds scary, but there are several on the forum who have had this done and are very satisfied with the results.
Logged
Les - 10 yrs Peyronies Disease free
My History

sgtnick

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 43
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #4 on: July 19, 2011, 09:28:07 PM »

Abelard

I, also, feel your pain but in a different way.  I  have compassion for you because I know the absolute futility of another type congenital defect.  However, pain is pain, regardless of the cause.

Until about 4 years ago I could achieve an erection on demand, I could think up an erection  -  and then:  One day I looked at my dick and it was shaped like the numeral 7 and it began to slowly shrink day by day.  And so did my coping skills and self esteem.  Most everyone here knows about this barbaric disease.  NOTHING, absolutely NOTHING is more debilitating than the onset and after effect of Peyronies Disease.

When I was 17 I enlisted in the Marine Corps.  I won't bore you with a bunch of crap but I will tell you that the Marine Corps taught me about the "will to resist."  NEVER, NEVER give up!  As long as you breathe you have a chance to recover.  There are a couple of Urologist in CA,  -  San Diego, and San Francisco I believe.  Someone else will give you their names and addresses.

On June 1, 2011 I received a penile prosthesis.  I just finished pumping it up and it is beginning to show promise.  It is straight and larger in girth and it may even be better than before Peyronies Disease.  The process is not without costs.  The physical pain is vicious and the recovery process is very annoying and frustrating, however,  the future is bright.  You need to see a Urologist who specializes in Peyronies Disease as well as Sexual Disfunction.

Hang in there until someone from CA sees your posts.  They will give you the names.

Please keep posting and reading and searching.


Semper Fi
Logged

fubar

  • Guest
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #5 on: July 21, 2011, 01:43:22 AM »

Let sgtnicks words ring never give up, it is not an option,  really! To much to live for and more experiences ! You are not dead yet brother.We all are here for you and are In this together. Easy to say yes easy to learn to fight another question. Find it in yourself to want to fight.

Then it begains.

Fubar
Logged

Abelard

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 9
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #6 on: July 25, 2011, 02:01:02 AM »

Thank you to all for your helpful responses and encouragement! I appreciate it very much.
So, this is my second post after having spent the last week reading of the suffering, and relatedness in suffering among the other participants in this site. I have much gratitude in my heart to know that I have found my tribe, so to speak. People who have kept the same secrets, the same secret pain. Very validating after having kept this a secret all my life.
With a wealth of experiential information available here, I felt I ought to have an intention from this point on, a reason to be here other than encouragement and words of wisdom from wounded healers.
I want to know what now..? I have seen many problems with resolutions here. I would like to post a story of return...Restoration, recovery, after a lifetime...of not knowing what it means to have an erection, keep an erection, and feel human.
As you are aware, I was born with Peyronies Disease, with the accompaniment of severe hourglass deformation at the base, that restricted circulation to the point of impotence. I would greatly appreciate it if you all can let me know what you think about a penile implant? I'm aware that there is an O.G penile implant expert here, JackP, I believe, who is an expert on the issue? Would this be a possibility? Keep in mind I have had the Nesbit procedure already, Verapamil, vitamin E, Viagara, and I'm still the same as before.
Logged

sgtnick

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 43
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #7 on: July 25, 2011, 06:12:04 AM »

abe....

I suggest that you speak with a Urologist, NOW!  Dr Eid in CA 212-535-6690 or Dr Levine in Chicago 312-563-5000.  Their offices can refer you to someone if you can't go to them.  Ultimately, you have to make the decision on who you are comfortable with.

The questions you ask appear to me are for a physician to answer.  The men on this forum are are very knowledgeable and extremely supportive, however, I think you need to be talking to a Doctor at this point.  Apparently you have spoken to a doctor in the past about your condition.  Call his/her office for a referral to a Penile Prosthesis/sexual dysfunction specialist.

Meanwhile, Dr Laurence Levine has a book out,  "Understanding Peyronies Disease."  This is a good read for informational purposes.  Keep reading this forum and keep searching for a Physician.  There is help available and you will find the right person to guide you through this "unsolved opportunity." Read the thread on this forum:  SURGERY FOR PEYRONIE'S DISEASE  -  Good luck.
Logged

Abelard

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 9
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #8 on: February 19, 2014, 06:48:36 PM »

Hello. I had severe Peyronies Disease w/severe hourglass and pisspoor circulation my whole life...Doctors refused to believe this. I diagnosed myself via medical books when I was 19. I needed a doctor to corroborate what I knew already so I could get a quick fix: surgery. I found a doctor in Burbank, Ca, Dr.Gelbard. He agreed to the Nesbit procedure in a flash. Said there was never an issue. Well, after the surgery my life turned to crap. My dick was worse than before. Bend was the same, circulation was much worse, weak-ass erections, more pain, insanely deformed hourglass, and extreme scarring at the excision site!!! I am 33 now. Many years of suffering and emasculation have left me with a terribly wounded masculine psychology. Today, I am afraid to move on with finding a treatment. Not because I am giving up, or have been defeated. But because I am now hanging on to threads to a healthy mental life. This Disease is a labyrinth of impasse: One never has enough money, doctors too unsympathetic, and unwilling to help you find a way to pay for what must be done. If I pursue this again, and find there is no help, then I will be a psychotic. I am already violent on account of the life I have lived up to now. I can't imagine what it would be like if another doctor [email protected] me up. All I will consider is an implant. But that is nowhere in my budget. Anyway, I wish you all well on your journey through this madness.
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6667
  • Age 71. Peyronies from January 2009
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #9 on: February 19, 2014, 07:36:05 PM »

Abelard

Sorry to read your story, what you are going true.
I split and merged your post with your topic opened almost three years ago that it will be a continuity of your story/situation.
On the forum have many positive reports about Dr. Gelbard, but it seems not everything he is doing is successful.
In my opinion you should search the possibility to make an implant. I hope your insurance can cover it.
Dr. Drogo Montague at the Cleveland Clinic. If no insurance, they are charging $12,000 for the LGX 700.
Read the topic bellow:
http://www.peyroniesforum.net/index.php/topic,3683.0.html
Drogo Montague, MD - Urology, Cleveland Clinic
An excellent option will be also Dr. Douglas Milam at Vanderbilt.
Douglas F. Milam M.D. - Home
Penile Implant

James
Logged
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Abelard

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 9
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #10 on: February 19, 2014, 08:44:20 PM »

Hi James. Firstly, thank you for your kind response. I have returned to this forum after a few years. When I saw your post I looked up both of your referrals. The secretary at Dr.Milam's office pissed me off straight away, as she would not let me tell my whole story, and told me it would be a 20 to 30,00 dollar investment if I wanted a prosthesis, because they did not take my insurance. I have been calling referrals from this site and they have all been giving me the shaft. Exactly what I expected when I returned to the fight. I am not sure what to do. I don't have much money, but a lifetime of personal suffering. This ambivalent journey is what keeps me from pursuing closure for this Disease. How are these sufferers healed? Are they rich? Do they have some special insurance? I am somewhat ignorant of how to proceed? Please help. I have never been so humbled.
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6667
  • Age 71. Peyronies from January 2009
Re: Is Congenital Hourglass Peyronies still Peyronies?
« Reply #11 on: February 20, 2014, 03:08:57 AM »

Abelard

They answer is somehow surprising me. I was in touch by email with them in the past and they were very correct.
I was in touch also with Dr. Montague office and they was very nice and helpful.
I copy/past bellow a few things people had posted on the Internet regarding D. Montague and his office:
Quote
Dr. Drogo Montague at the Cleveland Clinic can implant an AMS 700 LGX for $12,000.
Quote
The Cleveland Clinic will do the surgery for that price if you have no insurance
or crappy insurance like mine. I even got a low interest loan through the bank they use.
Income was never discussed. To get the loan, you need a job, a valid social security number, if you have ever declared bankruptcy, it must be discharged.
You must also be in good standing with U.S.Bank. I got a loan for the full amount.
Angel Bilal in the patient financial department for urology gave me all the information. Her phone number at the Clinic is 216-445-4475
Call Mrs. Angel Bilal. Check out if they accept your insurance and if not talk with her how you can get the loan.

Quote
After talking to Angel B. In the urology patient financial department, my next bill will read $11,900

Hope the information above helps
James
Logged
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
175 Replies
93789 Views
Last post June 25, 2015, 08:36:06 AM
by Tim_B
0 Replies
2354 Views
Last post March 18, 2014, 10:47:08 PM
by james1947
0 Replies
683 Views
Last post July 12, 2019, 08:53:12 PM
by Wethenorth