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Author Topic: What age at diagnosis?  (Read 3325 times)

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welshwales

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What age at diagnosis?
« on: May 06, 2014, 11:53:48 AM »

I've read a fair bit about peyronie's being much more common in men over 50. But many of the forum members appear to be in their 20s and 30s. So I was wondering how old you guys were when your peyronie's developed, and your age at diagnosis. Also, how aggressive the disease is in regard to your age, and whether you have erectile dysfunction. I have read that it is more aggressive/progressive in younger men.

I was 31 when Peyronies Disease developed, diagnosed within 12 months. For 3 years i only had vitamin e in terms of treatment (my old uro was useless, and now have other things in the works thanks to this site). The disease is very aggressive, multiple plaques and bends, and still progressing. Significant reduction in length and girth (6.5 inches down to 4.8 in length, about 40% loss of girth.) Erectile Dysfunction is a massive problem for me, as I am unable to maintain a viable erection for long.
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james1947

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Re: What age at diagnosis?
« Reply #1 on: May 06, 2014, 03:10:50 PM »

My symptoms started at the age of 61 following an accident during sex.
No treatment for 3 years, diagnosed also after 3 years.
The disease advanced slowly during this period.
Sharp bent to left close to the base (plaque), upward banana shape (long plaque) right twist (two hourglasses) twist to left (hour glass).
Lost 6.5 cm (from 18 cm) lost half of the girth.
VED, Pentox, low dose Cialis, Ubiquinol gived me back 1.5 cm and 20% from the lost girth, hourglasses disappeared and the twisting also, the calcified plaques softened.
Following first PRP (4.5 ml) got back 0.5 cm, some girth an better erections.

James
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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

emasculated

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Re: What age at diagnosis?
« Reply #2 on: May 06, 2014, 06:34:00 PM »

Mine got diagnosed at 26. It's one year since symptoms started. Disease is still considered mild, slight tilt of the head, no curve, mild decrease in length. The pain is the worst thing. Sometimes less, sometimes more. I try all manner of stuff.
I've read this thing about the disease being more aggressive in young people as well. And there are a few bad cases here, but overall the majority I PM'd with are mild (many no longer active). Some got better after Pentox and stayed stable.
And then the older persons also have very bad cases. I think there are two types of Peyronies Disease, over 40 and below.
The below 40 cases present earlier with multiple smaller plaques and lots of pain. With more slow progression. The worst thing in young guys is the inflammation which seems very extreme and hard to put a stop to. Most in the pain section of this forum are young guys etc.. (often years and years of pain).
The older guys by contrast often have a more sudden and dramatic onset with little pain and bad curvature, BIG single plaque right at the start.
At least that's my impression. It's not true in general, but in the majority of these age groups.
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LWillisjr

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Re: What age at diagnosis?
« Reply #3 on: May 14, 2014, 09:16:14 PM »

Maybe younger guys are more vocal to talk about it.

The theory for older guys is that their erections are weaker and more susceptible to injury.
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Les - 10 yrs Peyronies Disease free
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Darcys

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Re: What age at diagnosis?
« Reply #4 on: May 15, 2014, 07:45:01 AM »

Hey guys
54, just got diagnosed yesterday. And while I am not happy to join the club, my biggest fear was cancer, so to be honest I was extremely relieved with the diagnosis. I'm getting to the age where mortality becomes a very real concern with any kind of lump.

I have one plaque, on the top at the base, seems quite large, maybe 2" by 1/2 " wide. Appeared very suddenly and scared the hell out of me. I am getting a little hourglassing when I first get an erection. It seems to go away though. Celebrated last night and had sex with the wife. Tried to be careful, felt a little bit of discomfort on entry and then it was okay, just took it easy. We will have to figure out best methods ie lubricants or whatever.

I'm in canada, and the GP said she did not want to recommend any treatment until I saw a urologist. The problem is, it is at least 6 months to get in to see one. I have another GP in mind that I will go to, he is more receptive to getting ahead of this quickly . Dam socialized medicine up here......
Cheers and good luck everyone
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Caesar

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Re: What age at diagnosis?
« Reply #5 on: May 15, 2014, 01:24:31 PM »

31 years old, diagnosed by urologist 5 months ago: one lentil-sized lump in the right side of my penis.
Another lump with the same size has just developed three weeks ago in the upper side of my penis, but closer to the glans.

I guess time is not on my side, so I'm trying to retrieve as much information as I can since my urologist has taken the "wait and see" approach so far.

Best regards.
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Age: 37
First onset: January 2014 (lasted 16 months) | Treatment: Q10 (ubiquinol) + Acetyl-L-Carnitine | Result: 15º curvature to right and narrowing at the base.
Second onset: January 2020.

dioporcolorisolvo

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Re: What age at diagnosis?
« Reply #6 on: May 15, 2014, 04:26:59 PM »

Diagnosed at 27 years old. Curvature, loss of girth, deformation.

Tried EVERY treatment: nothing has worked.
Infiltrations of verapamil and cortisone worsened the situation. Also laser therapy and ESWT.
After 3 years and half, i've gone from Italy to Usa to do priapus shot.
After 17 days i've gained 0,5-0,7 cm in girth, no changes in lenght. Erections are better.
I hope to regain the girth lost. I will do almost certainly the second shot in July.
This disease has changed for ever my life, i am not anymore that i was before the disease.
I've another chronic disease, the CCPR (chronic pelvic pain syndrome), so my war is very difficult.
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rellisacct

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Re: What age at diagnosis?
« Reply #7 on: May 15, 2014, 05:34:11 PM »

Been living in hell since 20.
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LWillisjr

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Re: What age at diagnosis?
« Reply #8 on: May 15, 2014, 10:14:57 PM »

I guess time is not on my side, so I'm trying to retrieve as much information as I can since my urologist has taken the "wait and see" approach so far.

[/quote

Ceasar,
The worst thing you can do is wait. You need to get agressive about treating this, it doesn't fix itself.
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Les - 10 yrs Peyronies Disease free
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Njnist

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Re: What age at diagnosis?
« Reply #9 on: May 16, 2014, 03:32:32 AM »

Started at 25, diagnosed at 26. I agree with emasculated in that it presented with severe erection pain for over a year before any deformity happened at which point it started to stabilize. The curve started gradually...actually noticed the feeling of a hard, uneven spot while erect before I realized I was developing a curve. Didn't start any real treatment until it had stabilized as the urologists I saw didn't know it was peyronies until too late. Curvature was starting to get a bit severe (>30 degrees) before pentox, l arginine/carnitine and coq10 helped settle it....It could just be nature progression I suppose. Now I am doing traction and my erect length is pretty good considering where the curve is at (about 15 degrees-right near the tip). Erections are rock hard again and I have a very functioning member. It's amazing to think how hopeless I felt almost a year ago and now I honestly don't even really think about it anymore.
I know it is easy to say never give up considering my case has worked out surprisingly well, but there is no reason to stop trying. My heart goes out to you with really severe cases, it can be very emotionally and mentally draining. Keep fighting.

Emasculate, don't get too down about the pain, mine went for approximately 16-18 months before the pain finally settled down. I am now pain free.
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Skjaldborg

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Re: What age at diagnosis?
« Reply #10 on: May 16, 2014, 11:50:35 AM »

Injury and diagnosis at age 29, now 35. No health problems at the time and in excellent shape. I think many young men are getting this disease by attempting the risky sexual behaviors seen in pornography (girl on top, reverse cowgirl, etc.) often while using alcohol or drugs, which can weaken erections and make one vulnerable to injury.

Skjald
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user of no names

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Re: What age at diagnosis?
« Reply #11 on: May 17, 2014, 07:10:22 PM »

I had my first injury at 14 and the second at 22. Both were injurys from aggressive masturbation. I was diagnosed around 25 and currently I'm 33.
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rellisacct

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Re: What age at diagnosis?
« Reply #12 on: May 19, 2014, 11:22:17 AM »

skjaldborg - Agree with that 1000%.
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james1947

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Re: What age at diagnosis?
« Reply #13 on: May 19, 2014, 06:12:34 PM »

Off topic, but if talking about sex behavior of girl on top, cowgirl, how you can avoid?
Many of my sex partners during my life, the mentioned above sex behavior were the only positions thy ca get orgasm.
In those positions they can be in full control they said.

James
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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

rellisacct

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Re: What age at diagnosis?
« Reply #14 on: May 19, 2014, 07:54:04 PM »

Just my suggestion, but they don't have to go up and down like bouncing on an exercise ball. Slow and controlled unlike the girl who caused my first injury. She went crazy and I'm paying for it.
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james1947

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Re: What age at diagnosis?
« Reply #15 on: May 19, 2014, 08:17:51 PM »

The problem is that we like and encourage the: 8)
Quote
She went crazy
Until we get Peyronies and then we complain.
If we were thinking before that this disease even exist, we were more careful.
But sadly non of us was aware of that. :(

James
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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

rellisacct

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Re: What age at diagnosis?
« Reply #16 on: May 19, 2014, 08:28:44 PM »

True and good point. It is one of life's great tragedies.
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dioporcolorisolvo

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Re: What age at diagnosis?
« Reply #17 on: May 20, 2014, 06:31:31 AM »

Just my suggestion, but they don't have to go up and down like bouncing on an exercise ball. Slow and controlled unlike the girl who caused my first injury. She went crazy and I'm paying for it.

Same thing for me.
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Caseyjones01

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Re: What age at diagnosis?
« Reply #18 on: October 23, 2020, 12:45:40 AM »

Yes i think the lack of awareness is really sad, and every doc and uro and even specialist doesnt even care or want to treat this, they literally want to just get rid of you. My loss of size, discoloration curve and pain are making my life a living hell, no one understands or really cares. I am 37 and i was just starting to pick the pieces up of my life after the trauma of losing a loved one, and also a bad breakup and a few other hard pages in my life only to be completely destroyed by this. I am really thinking of suicide if my dick gets any smaller i am 14 months or so into this and the pain keeps coming back. And even if it goes away im left with a small dick now. No girl will want this dick. How is this possible????? So frustrating!!
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Incident late April 2019; pop sound from BJ and loss of erection; Diagnosed sept 2019. Possible 2nd injury 1.6years so far. Now have 4 plaques and loss of size and girth.

Pentox 3 times 2.5 mg cialis daily
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