My journey so far

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AussieDude

Hello all,

I'm AussieDude. I'm new. Good to be here after spying for so many months! So. Yes I've got Peyronies Disease obviously. Thought I'd share my story so far. I'm 40, married, kids and all that. Noticed an indentation on the side of my old fella over a year ago. Thought, Hmmm, that's different. Didn't take much googling to figure out what it was the start of (I'm also medical so it helps). So here I am over a year later.

I saw a urologist not so long back. He confirmed my self diagnosis. By this stage I had an upwards bend of around 35 degrees I reckon, maybe more, making sex uncomfortable with the wife's favourite position (on top). So I opted for Xiaflex. His method is x2 injections followed by 1 month of 3 x 30secs stretching per day, repeated only once (so two rounds), He reckons the vast majority of the positive results are found with the 1st two rounds (I can opt for more if I want, but damn it costs a bit!).

So I've had 2 injections. Hurts sure, but one survives. The day after. my 2nd shot was a day I will never forget. It needs its own paragraph!

I'm in bed half asleep in the morning. Wife's at work, kids asleep, and I've got morning wood. A throb occurs, and all of a sudden I was struck by the most intense pain I've ever felt in my life at the superior distal portion of my member! It was a tearing pain the sent me sitting bolt upright and literally screaming. I had a massive parasympathetic response; sweating, nausea, near faint, and explosive diarrhoea (I made it to the toilet for that). Meanwhile I was grabbing my member as it swelled within my hand to the size of a bloody orange!

Like I said, I'm medical so I had an idea about what had just happened. Something had ruptured and caused a massive internal bleed. The resulting haematoma was scary. However it was soft and I figured conservative management was best (compression bandage, ice, tramadol). Uro confirmed this later as best management.

Now 2 weeks have past. I had to delay the stretches a few days but I reckon my curvature has reduced by half! Still due for round 2 so I expect further improvement. So far, despite the painful incident Xiaflex seems to be doing the trick.

So that's me so far. Glad to be here. And yeah, I went through all the psycho stages leading up to this point, but got through it all. Normal human reaction after all that is adaptable over time.

Paolo

Thanks AussieDude for registering, it doesn't take a moment for you guests out there!

Wow, that story brings tears to my eyes, I definitely don't do pain of any kind lol  :'(

I hope you will post again with your progress, particularly any benefits from the stretching.

Oops, just saw your further post.
Paul  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

TonySa

Have you looked into patient copay financial assistance w Xiaflex?  Was the thrombosis following an injection?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

swiss

Wow! That's kind of terrifying. I also have a 35 degree bend and indent. Did your indent go away?  

AussieDude

Quote from: Tsanchez12369 on April 23, 2018, 09:54:48 AM
Have you looked into patient copay financial assistance w Xiaflex?  Was the thrombosis following an injection?

It was the next day, in the morning while I was half asleep with a morning boner. Plaque and vessel rupture. I told my wife her labor pains paled in comparison to that feeling!

AussieDude

Quote from: swiss on April 23, 2018, 10:30:25 AM
Wow! That's kind of terrifying. I also have a 35 degree bend and indent. Did your indent go away?

The indent was my first feature and pretty much went away to be replaced by mild pain that lasted months in the same spot. Then began slight leftward curving followed by dorsal curving which has become the most significant feature of my Peyronies Disease.

Still see a very slight left hand side concave area when stretching the flaccid penis strait, but not noticeable when hard.