This will likely be my last post but if you sort by my name you will find detailed posts going back several years. I was literally the second person in MA to get Xia-Flex when it was approved in early 2014. The first person beat me by only 1 hour....he had the appointment before me. Since then I have had 14 or 15 Xia Flex treatements spanning 3 years and countless Verapamil
treatments....perhaps 25 or so. I had a total of about 4 months of no treatments at different times due to other medical issues but other than that it has been fairly steady. I started with at least a 75 - 85 degree straight up bend. At times it seems like it was 90 degrees. Today it is less than 25 degrees and it bends straight very easily. I also take low dose Cialis as I am now 61....4 years older than when I was first diagnosed. This along with working hard to improve my marital relationship has helped me get back to enjoying a decent sex life. I continue to have treatments. 6-8 Verap & then 1 Xia-Flex. I had Verap today. I hope to finish at the end of this year.
I think my experience makes me as qualified as anyone on this web site to give advice, so here it is.
1. In one of my first posts I said I used ice to reduce swelling after Xia-Flex. Don't do it. Xia-Flex is a biologic and needs body temperature to work correctly so I likely reduced the effectiveness of my first treatment.
2. I think my doctor is the best but we disagree on one very important issue. He says there is no way masterbation causes Peyronies. He's wrong. I had a second scar occur about a year ago.....2 years into treatment. When I think back to when the first one occured I find both scars occured after one common activity: Periods of aggressive, frequent masterbation. I've talked to a lot of you over the years and one common issue amongst many is a lack of a sex life or partner so I am guessing this is what is happening. Doctor's say it's caused by injury and even call it "micro-injury". I think this is a way to keep from embarrassing patients. Regardless, when I changed my techique and stayed up near the head where the nerves are most senstive AND USED A GOOD LUBRICATION there is no question the RATE of improvement increased. That is, I had more significant results with each treatement. This means for two years I was slowing things down by masterbating in between treatments.
3. We all know depression is as bad as the condition. PLEASE realize this disease can be treated but it can take a very long time. Sure, some guys get amazing results after a few treatements but (at least my doctor) says most guys he treats require much more than insurance covers. I'm lucky. I have the resources to pay for the treatements where insurance leaves off but on the other hand what good does the money do if you are living life very depressed. Get help for the depression and do whatever you need to do to pay for the treatements from an experienced doctor.
4. Most urologists don't know crap about this disease. If they want to prescribe Pentox
or vitamin E, walk away.
5. I had a massive blood clot a year ago completely unrelated to Peyronies treatements and am now on blood thinners. No issue with Verapamil. I have to come off the blood thinners for Xia-Flex but actuallay had a couple Xia-Flex while on thinners with no issues.
6. For god's sake do not resign yourself to this condition forever.....not yet anyway. I had a very subborn case. My penis is not perfect but it works well enough to give me back my life. I'm building a hot rod....something I've wanted to do for 30 years yet 3 years ago I was trying to figure out how to kill myself. I've been where you may be now. You are not alone....not at all. Email me or call me if you want to. I'm Paul. 978 239-0707.