Hi all. I am 30 years old and have had Peyronie's Disease for ~3 years. I have two defined plaques with some diffuse fibrosis, causing hourglassing and an upwards curvature to the left. The disease improved in the second year of its course but reached a point of stasis about one year ago. I can still have penetrative sex but the plaques make erections painful. My urologist submitted a letter of medical necessity to my insurance, which then approved Xiaflex injections.
Today I received my first Xiaflex injection at the Emory University Clinic. The lidocaine injection was quite uncomfortable, but after that it was fine. I will have my second set of injections on Friday and then modeling on Monday.
I will be sure to update this thread as I continue through my treatment. This forum has been a massive help so I hope that documenting this experience over the next several months can assist others.
Hi Whoops,
Thanks a lot for your input and your participation in our great adventure toward better times :-).
I personnally seem to experience exactly the same symptoms as you: hourglassing/bottlenecking for 1 year, recent upward/left curvature, shrinking and big pain during erections. So, for you the pain has never gone away in 3 years??
Anyway, I would be delighted to read about your own path and, I hope, your progress!!
All the best,
Gabriel - the pain has improved significantly but I still feel a tightness in my penis around the plaque during erection.
My bruising is relatively minimal and I have some swelling in my pubic area. I had two nocturnal erections last night that were extremely painful, but otherwise I feel OK. I did some brief modeling per the recommendation of members of these forums. I cannot say whether the plaque feels softer or not, but I am thankful to be intervening in this frustrating disease.
Fingers crossed you have no penile fracture with this. Take care and keep us posted! I always like to see people taking proactive steps towards solving their situation
I woke up on Wednesday with a marked increase in bruising and swelling, but limited pain. 24 hours later the swelling has reduced and the bruising is clearing up in places. I did a quick literature review on PubMed and it has been reported that nocturnal erections can cause an extensive hematoma in a Xiaflex patient. Also, my urologist did warn me that my penis could swell "like an eggplant", but I should not be concerned.
I am scheduled for my next injection tomorrow. I wonder if my urologist will inject into a bruised penis?
I can't speak to the state of my plaques, but hopefully they are starting to soften, though I don't expect results this quickly.
I had the 2nd set of injections for my 1st round of Xiaflex today. My urologist noted that my bruising was extensive but is within the realm of normal. She said that none of her patients have ever had a corporal rupture but she has met urologists at conferences who have seen it.
The pain is fine. I did some very gentle remodeling per the recommendation of people on this message board. On Monday I go in for my modeling session.
Hey Whoops, thanks a lot for keeping us updated!! I would tell you not to worry too much about the "eggplant-like" shape and colour of your penis: mine had the same look after my first PRP injections (I mean, it was very, very bad to look at), but it all came back to normal after 6 or 8 days.
Stay strong, and all the best with your next round of injections/modeling :-)!!
My bruising is going down, thankfully. I have some substantial swelling/tenderness at one of the two injection sites, but it appears to be going down slowly. Modeling has been going well thus far. It is too early to speak to whether or not I see any improvement. The swollen injection site gets quite painful during erections, so I haven't been fully erect yet!
Pain is almost nonexistent. Nocturnal erections are sore but nowhere near as painful as they were shortly after the injections. I still have swelling at the injection sites, but it is slowly going down... This is quite a brutal cycle. I'm shocked at the side effects, though luckily I did not experience a penile fracture (though certainly one hell of a blood vessel nick). I can't quite evaluate any results yet due to the swelling... How long can swelling exist for?? It has been 8 days.
Whoops - glad you are thru the first cycle. After my first cycle I did not get the lidocain injection just the Xiaflex. I decided why get two injections, I will say that after 8 injections this way I dont see the need for the lidocain - just my experience. To me it was like 8-10 seconds of pain and then over. I have a diffuse plaque so he was injecting in multiple locations each time. Bottom line its gonna hurt regardless. Hang in there and things will improve. I went from >30% leftward curve to apx. 10degree dorsal upward now but plaque is no longer painful.
Yeah, I may decline the lidocaine shot next time. I suspect it didn't help things.
I am 10 days out from my second xiaflex shot. The bruising is slowly fading away. I continue to have painful nocturnal erections and significant swelling at the injection sites. I am slightly concerned because when I have an erection, the penile tissue at and below (more proximal to my body) the injection sites don't become erect. I'm hoping this is just because of the extensive inflammation and that once that subsides my erection length will recover. I can't believe how hard these shots have been on my penis and scrotum!
Hey Whoops,
Don't get crazy about this phenomenon, it's probably a normal reaction of your body towards what it perceived as an external agression. If you want to be sure and relaxed about it, give a call to your uro :-) !!
https://www.peyroniesforum.net/index.php/topic,9973.0.html