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My PD Journey and Xiaflex Treatment


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I was diagnosed with Peyronie's disease in June 2013. It began with a small nodule in the size of a grain of rice on dorsal near the base. Within 6 months, the plaque developed into a long, hard cord that covers the entire dorsal (between base and glans). The cord (or plaque) is about 5 mm wide; 3 mm thick. The curvature was 42 degrees upward in 2013. Gradually the curvature reduced to 39 degree.

I had 5 Verapamil injections in September 2013. In my opinion, Verapamil turned the small nodule into the long hard cord and curvature worsened along with shortening problem (lost 1") I don't blame my uro for Verapamil shots. He was trying to help.

Then in 2015, I completed 4 cycles of Xiaflex.

Doctor injecting banana

Summary of Xiaflex Treatment

Pre-xiaflex was approx. 39 degrees

1st xiaflex cycle: 3/2, 3/5

measured 4/2 - 39 degrees

measured 4/15 - 35 degrees

2nd xiaflex cycle: 4/30, 5/1

measured 5/18 - 32 degrees

3rd xiaflex cycle: 6/15, 6/18

measured 7/12 - 30 degrees

4th xiaflex cycle: 9/15, 9/18

measured 12/1 - 30 degrees (no change)

My uro thinks there isn't anything he can do to help me. I just have to live with the PD condition. Xiaflex reduced curvature by 9 degrees with the cost of 28K USD.

I am still using the traction device, hoping I can gain some length back and reduce curvature, but I feel my plaque is a very stubborn one.

Any advice, remarks, suggestions, news on PD treatment will be appreciated.

Thank you in advance!



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Comments On This Article

Birgir December 20th, 2015

Thank you very much for sharing your story and your experience of both Verapamil and Xiaflex injections. I know many men are interested to hear about men's experience of both.

I'm very sorry that you did not have better results (though 9 degrees is of course better than nothing) and wished I could offer you some practical advice / suggestions.

Have you considered seeking second opinion from another Peyronie's specialist? Have you explored oral medication, e.g. Pentoxifylline?

I would defiantly also continue the traction therapy, as you have nothing to lose but hopefully something to gain (pun intended!).

It is always important to keep things in perspective and individual circumstances can also play role. Younger men and single men may be inclined in trying more options and spending more than older man in loving relationship may. It is possible to learn to live with 30 degree curvature and still enjoy good sex life.

Learning to live the PD condition is of course always an option though most men want to explore all other options first. This article compares the most common Peyronie's treatments today, maybe it can help you to identify (and eliminate) your options.

I wish I could be of more help and hope some of My Peyronie's readers will join in with their thoughts and suggestions.

Again, thank you very much for sharing your story with us, I know many men will find it helpful.

Kind regards,

Birgir


CJ September 30th, 2016

I had eight shots of Xiaflex into my penis.   My doctor says the plaque has gone away.  Unfortunately I still have the curvature.  This makes me very distressed.   The bend is not so bad but I would like to get rid of it once and for all.

I was thinking of getting the penis vacuum.  My doctor really has no other help for me.

Any ideas?

  • Birgir September 30th, 2016

    Hi CJ

    I'm very sorry that your Xiaflex treatment didn't work for correcting your curvature but the good news is you say your bend is not so bad. Bear in mind that the medical profession considers penis with up to 10 degrees curvature as straight penis.

    So you may just want to learn to live with your mild curvature. Slightly bent penis is nothing to worry about. You can still live perfectly great healthy sex life with mild curvature.

    I of course realize that most men are concerned about the look as well as the function. Still, it is a question about the "cost benefit ratio", i.e. how much hardship is justified to improve the condition slightly.

    But if you do decide you want to give traction therapy then I would rather go for traction device like Andropeyronie or Phallosan (if you prefer to wear it while you sleep). This article explains the difference between traction devices and penis pumps and explains I would recommend traction device to reduce penis curvature.

    For more information about traction therapy for men with Peyronie's then this article contains links to all my articles about the topic.  

    Again, traction therapy does require serious commitment, you need to wear the device for up to 8 hours daily for extended period (3-6 months) for maximum results. And as always with Peyronie's there are no guarantees it will work for you but traction has helped many men reduce their curvature (myself included). And it is the cheapest and least invasive treatment options available.

    I hope this is some help. I wish you all the best in the future.

    Kind regards,

    Birgir




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Hello, I'm Birgir

This website is based on my experience of Peyronie's disease