New member. Frustrated he was not provided this forum sooner

[Mobilize1]

My intro will seem long, but I have two years of pent up frustration, significant expense, and negative impact to my life.

My frustration with US Urologists is that I asked about Peyronies Disease forums to get feedback, treatment options, success/failure perspectives, and support from others suffering from this condition with no assistance given. Very disappointing and perhaps a reason for there not being treatments leading to a cure for this condition. Dr. Landon Trost from the Male Fertility and Peyronies Disease Clinic told me about this forum site during a phone consult I had with him. I want to thank all who have contributed to it. I have gained immensely in just the last week or so since learning of this forum.

My Peyronies Disease journey began in Feb 2019. I noticed a dorsal bump about 3/4" down the shaft from the glans. No initial discomfort. I have always had a 20 degree congenital left lateral bend, which had no impact on my sex life. I have been married to my wife for 29 years. Also, my wife has been supportive and we thus far we are dealing with the negative impact the Peyronies Disease has caused us. Any with this condition know the problems it causes in your sex life.

Sidebar. I was working for the US Govt in Germany at the time of onset. Due to negative experiences with medical care in Germany I did not pursue treatment by German medical providers. I was able to be seen at an American medical clinic in Germany.

I was unaware of Peyronies Disease before this and thought that the bump could be a tumor, so I went to the Doc right away. The doc gave me the correct diagnosis. Not a tumor likely Peyronies Disease and he correctly described the likely progression. Within a few months I started having a dorsal bend and burning sensation in the area of the bump in my member. I was referred to a Urologist and was prescribed Pentox, which I thought was helping with the burning and began manual traction. In the fall of 2019 we relocated from Germany back to the US.

Through internet research I determined that finding the least invasive processes made the most sense before progressing to surgery, which based upon the sources I was finding receives mixed results. My research led me to pursue traction therapy, Pulse with PRP treatment and then try Xiaflex injections if traction and pulse PRP failed.

My experience with urologists here in the US has been frustrating. I am now on my sixth counting the one in Germany. NO set scientific approach to treatment. The first one would not renew my Pentox prescription and gave me no treatment recommendations other than learn to deal with my new normal. He was completely against Xiaflex due to the risks of penile fracture. He declined referring me to a urologist that was providing Xiaflex injections. I asked about traction as a therapy and he had never heard of it. It was a very disappointing to say the least. In the meantime it was now November 2019 the Peyronies Disease progression had increased to about a 45 degree bend. I now know I likely missed the window to get the most benefit from the least invasive treatments.

My traction research led me to pursue Restorex due to the counter bending capability. December 2019, I went to Mayo Clinic in Rochester, MN where Dr. Landon Trost had worked in their urology department and had been a part of the invention team for that device. Dr. Trost had left Mayo Clinic so I saw another urologist. Mayo Clinic did the ultrasound, confirmed the Peyronies Disease and provided the options for treatment. I purchased the Restorex traction device and began using it for treatment. At the same time I began treatment at a clinic using Pulse with PRP shots as a less invasive treatment protocol to Xiaflex. My opinion is that this is a very expensive and ineffective treatment. I would recommend against this treatment. Aside from one item. They prescribe using a VED as a part of their treatment. I have continued to use traction Restorex and VED since. Either one, the other or the combination of the two devices have restored some girth and improved my erections, which are no longer painful. Not sure about length retention having regained length. The flaccid stretched length is about the same as before the onset of Peyronies Disease. Not sure how to determine if the erect length has been reduced. I never measured or took photos of my member before the onset of Peyronies Disease, so do not have data to compare. I just know I do not like the significant bend in it and how it has impacted by sex life.

Along came COVID and shut down treatments and urologists being able to take new patients. With no improvement and due to the great personal expense, I discontinued the pulse and PRP treatment. After several months of COVID shutdown for "elective" medical treatments in the US, I found a doc that provides Xiaflex treatment and from June 2020 until now have gone through 5 series of injections (normal treatment protocol is a series of 4 injections) with very little improvement to the bend.

I have since learned that Dr. Landon Trost had relocated and set up a Male Fertility and Peyronies Disease treatment practice in Orem, UT. I have seen Restorex traction device mentioned on this site's message threads, but no direct references to success rates, satisfaction or dissatisfaction with Peyronies Disease treatments from it or from the Dr. Trost's UT practice. Any feedback on this would be appreciated.

Again I realize this is a long intro. This condition has been a real kick in my junk. No pun intended.

[Mikel7]

I cannot give you info on Restorex , but I can say that traction and VED will help you in the long run. I have a very similar bend as yours. I have been using the PMP for about 4 months now and have seen improvements. I was on cialis and pentoxi but had to quit all meds due to sudden hearing loss with tinnitus/hyperacusis. I also use vit E and ALCAR. Many urologists don't have a clue. My wife of 33 years for me has been very supportive and this helps a lot emotionally. You must remember that this is a marathon and not a sprint. By the way have you ever had your Testosterone levels cheked - your Free Testosterone to be exact? Low Free T can be a contributing factor in peyronies.  

[Hawk]

First, I would like to welcome you to the forum Mobilize1.  Thank you for the informative first post.  Most of us share your frustration with the non-advice they get from many urologists.  In fact, I am pleasantly surprised you got the initial prescription for Pentox.

I know very few specifics about Dr. Trost other than the same details you shared.  Maybe I can make an attempt to reach out to him.  I am encouraged that he pointed you to this forum.

You might have read this already but if not, here is the link to our Survival guide.  It is important you start here.  It is packed with information and you should read it more than once.  It would be good to print it. https://www.peyroniesforum.net/index.php/topic,3180.0.html

That will help you to immediately start taking action.  It will also help you understand the questions you what to ask and the answers you receive.



Hawk