INTRODUCTION - Giddyup....

[Hawkeye1]

I'm 50....and to date, I'm not liking the 2nd 1/2 of the game as much as I did the 1st.  Married (24 years), I'm in good shape / condition, I eat organic / healthy foods, exercise regularly, enjoy a cigar now and then, as well as a cocktail or 2.  I have no recollection of any specific injuries.... so this is perplexing, to say the least.  
In January 2015 I noticed a slight pain with an erection... I dismissed it, and didn't think twice about it
In February I noticed the pain again, along with a "lump"... so I made an appointment with an urologist.  He said it's probably peyronies, but watch it and see if it changes.  I was happy to hear that it wasn't a tumor... to be honest.  
In March I had the beginnings of an hour glass, with diminished stability/rigidity.  I called the Dr. and he said to continue watching it... that there was really nothing they could do until it stopped progressing. ... and progress it has.
April brought a more pronounced hourglass, reduced rigidity, and a slight upward curve.... and a painful erection.
Fast forward to September - hourglass has not progressed, however I now have a 45 degree upward curve (starting about 1/3 of the length from the base), diminished stability/rigidity at the start of the curve, and erections are painful.  
Intercourse is out of the question, as I can't find a position that does not cause pain for me... oral sex went the way of T-Rex, about 22 years ago.... so I'm left to my own devices, as it were, and only when I can manage the pain.  The instability at the base of the curve hurts like mad if I try to straighten out... so I obviously avoid doing so.
October (today...in fact)... I met with my urologist.  He was surprised at the progression over the past 7 - 8 months.  I have scar tissue / calcification (for lack of a better term) - on top of my penis, starting about 1" from the base, on up to the base of the head.  He said it's one of the worst cases he's seen in a long time.  Thanks Doc...THAT was comforting!... but then again, he's not there to comfort me, is he.
He said again, there is nothing he or anyone can do until the progression stops.... which statistically should be within the next 3 to 6 months.  He said in 98% of all cases, the pain subsides... and the progression ceases, within 12 - 18 months of onset.  
He suggested COQ10 300mg.. "it's been known to slow things down".... I believe in herbs and naturopathy, so I'll try it.  
For now it's a situation of hurry up and wait... hopefully I'm not waiting for it to continue the curve, until it's pointing back at me....
He also said xilaflex is about the only thing that 'might' work for me.  Then he explained the lack of insurance funding, and the $30k price tag for treatment.  No way on God's green earth will I be able to sell that to my bride.
I'm sorry there is a forum for this... as it means there are a lot of us out there... but I'm glad there's a place to go, to vent, learn and grow (hopefully...HAHA!!... ).    Thanks for your support.

[J-A]

welcome fella, sorry you found your way here as that means you are afflicted as we are. There is good info on here Read Read and then Read. Dont accept poor information from urologists some are better than others.

Ask questions as someone on here has likely first hand experience

Good luck
J

[LWillisjr]

Arrrrggghhhh!!!  I get so frustrated at urologists who don't know much about this.

October (today...in fact)... I met with my urologist.  He was surprised at the progression over the past 7 - 8 months.  

His surprise is because he is not a specialist and should of had you trying things sooner. You need to run and find a Peyronies Specialist.

I have scar tissue / calcification (for lack of a better term) - on top of my penis, starting about 1" from the base, on up to the base of the head.  

Again..... run from this guy. Scar tissue and calcification are 2 different things. Scar tissue is the formation of a fibrosis. It may or may NOT calcify over time.

He said again, there is nothing he or anyone can do until the progression stops.... which statistically should be within the next 3 to 6 months.  He said in 98% of all cases, the pain subsides... and the progression ceases, within 12 - 18 months of onset.  

3rd strike..... he's out.  There are things you could have been doing to try to minimize the impact or slow things down. And he is giving you med school text book answers with not data to substantiate it.

[kuaka]

Hawkeye1,

Your Dr. is bordering on malpractice.

Find one who knows about this disease.  Delayed treatment will make successful treatment much more difficult.

Look at these forum entries and the external site to find a Dr who actually knows something about Peyronie's

https://www.peyroniesforum.net/index.php/board,37.0.html
https://www.peyroniesforum.net/index.php/topic,4063.0.html
http://expertscape.com/ex/penile+induration

kuaka