Guys, I am on the docket to start Xiaflex pending insurance approval. I'm fairly newly diagnosed. Peyronies Disease started around the beginning of 2020. I knew something was wrong and Googled around and quickly realized this is what I had. It got worse then Covid hit and I blew off going to the urologist because some "medical" websites said Peyronies Disease often goes away on its own. Also, nobody was really going to doctors between March and May due to Covid. I went to the first urologist in June mainly to get a referral to Dr. Tom Lue at UCSF. Dr Lue is one of the top Peyronies Disease doctors in the country and was directly involved with the creation and FDA approval of Xiaflex so I know I'm in good hands. However, like many top doctors he is in high demand and super busy so its hard to really get down to details with him in a brief appointment. We did an ultrasound and he told me that I had some calcification and have a large plaque area (2.5cm X 2cm). I'm not real clear on how that impacts my Xiaflex success chances. Dr. Lue made it sound like I may need several injections and even that is no guarantee I will experience improvement. I'm on Pentox and the other suggested supplements but while I sit and wait the plaque seems to be getting worse. It's definitely changing. So a couple of questions:
1) Should I even do Xiaflex? I hate needles and pain. It sounds like a terrible experience and I need someone to reiterate to me that its worth trying. A pep talk maybe. I feel like I could live with this as my curvature is around 50 degrees but bearable. Only minor pain during erection. I'm all for manning up but if its possibly not going to work, not sure I want to try.
2) When folks are doing heat, how does that work? What do you use for heat? I'm not clear on this.
3) I bought a traction device Dr Lue recommended off eBay but haven't tried it yet. Is there any benefit to doing this outside of after Xiaflex treatments? Dr Lue said I would need to do it daily after the injections but wondering if it's helpful without the Xiaflex.
Thanks and I'm glad that this board exists since there's not really anywhere else to ask these questions!
The decision is totally up to you. For me, I said why not, as I would always wonder if I was the miraculous case that only needs Xiaflex. Unfortunately for me I was wrong, but that doesn't mean it will be wrong for you. Be prepared for bruising, swelling, and possible hematomas. It will look like you hit it with a sledgehammer, but will go away in about 1-1 1/2 weeks, just in time for round two. Also, seeing you are at a 50 degree curve, it is rare to get back to completely straight with Xiaflex.
You're in good hands w Dr Lue and he can numb your penis before the injections. Adding traction will improve the outcomes!
I feel you. I am going in the first week of August to see if I should do surgery or the Xiaflex route.
From what they are telling me is you can expect up to a thirty degree improvement with Xiaflex, so you could expect good results. Just maybe not totally straight, but I would totally be up for that.
It sounds VERY painful... the whole process. But anything is worth a shot right?
With Dr Lue numbing the pens before xiaflex it really wasn't that painful.