Hello

[Real_pain]

I am 48 years old and have recently been diagnosed with Peyronies by a urologist.  I knew based on the symptoms this was most likely the issue but after ~9-12 months I decided to go see a doc.  At the time I was at ~30 degrees (bent up) and from my discussion and what I could find in the medical literature there was a chance that it could improve on its own....yeah, and there is also a chance I can win the lottery.  As soon as I figured out what was possibly the issue, before seeing a doc, I started taking vitamin E, just in case this may work. There is mixed information and no clinical trial data on this 'potential' treatment; however, in my case after 6 months (without missing a dose) it did not have any effect. My doc was not too excited at my visit about trying Xiaflex and my insurance will not cover the treatment; however, since the doc visit ~5 months ago I think I am now closer to 45 degrees (still bent up).  He has published several articles in the medical literature and his thoughts on Xiaflex was that it typically was not successful (~30%) and that it would most likely would only cause an incremental improvement at best.  

I have been married for over 20 years, my wife is supportive but it is hard to not think about this every day.  The real pain is feeling like you are maimed or less of a man.  I played many sports and have had many very painful injuries (4 rotator cuff surgeries, broken jaw, 2 knee surgeries, etc.)...this is by far the most damaging injury yet.

[james1947]

Real_pain

Not surprised that vit E didn't helped you, except one member that says it helping him, no one reported "results"from vit E.
You should be proactive if you want to do something about Peyronies.
In my opinion you should start VED, Pentox and low dose Cialis. This treatment helped me and others on the forum, sorry to say that it is not guarantying that it will help you also.

James  

[QuackAttack]

Real,

The psychological impacts of this condition to me are, by far, the most stressing thing for me. If your doctor is less than wiling to work with you, move on and find another.  Remember, not all Urologists are Peyronies specialists and your doctor works for you. Do not take no for an answer. Here is a list of doctors from the forum. If you are anywhere near Chicago, Dr. Levine is the man. Try to find a doctor that will fight for you and work to get your insurance company to pay for Xiaflex or PRP. However, your should look into Pentox and traction first.  Both Freemason and I are in the process of doing Pentox. I don't know if he is using traction, but I am and Pentox and Traction and that is one of the protocols that Dr. Levine uses. Your doctor shouldn't write off Xiaflex wholesale and if he didn't offer Pentox and Traction or VED with it, he may not be up on the latest research that Dr. Levine is putting out there. Good to hear that your wife is supportive because it is critical for your mental state.

Good luck,
John

https://www.peyroniesforum.net/index.php/topic,4063.0.html