Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

Pages: [1]   Go Down

Author Topic: Wow, new and overwhelmed - trying to find my feet  (Read 886 times)

0 Members and 1 Guest are viewing this topic.

craig3

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Wow, new and overwhelmed - trying to find my feet
« on: June 16, 2019, 02:01:49 AM »

I'm 53 and got Peyronies Disease last March from trauma during oral sex. I was lying on my back and my partner bent my penis backward about 90 degrees during oral sex in order to see my face. I remember watching this and thinking it didn't look right. My erections are not as hard as they used to be, so this type of bending back during oral sex was possible, but I felt no pain and figured my penis was fine. Now I know I suffered major trauma and have Peyronies Disease with a 70 degree curved penis to deal with.

The boards here have been incredibly useful and I still have a ton of topics to explore and understand better, but I wanted to make a first post and ask a couple of questions that are on my mind.

After my trauma, as pain began to develop during erections and I could see a curve upward. I waited a couple of months before finding a urologist in Salt Lake named William Brandt who has published on Peyronies Disease. But when I visited his office, the front desk said my insurance would not cover Dr. Brandt, but that I could see his PA Richard Jones. I was disappointed, but decided to go ahead anyway.

Mr. Jones said he treats a lot of Peyronies Disease patients and seemed very knowledgeable and hands-on. After checking photos I brought and my erection in his office, Mr. Jones estimates my upward curve at 70 degrees, which seems quite severe compared with others I've read about here. I have also developed a curve to the left. He did not do an ultrasound, but put me on Pentox and Sildenfil and suggested I get the Men's Progress traction device and use it at least 2 hours each day.

Mr. Jones also initially suggested a series of Verapamil shots, but when I called the office to check in a few days later and explained that I'm not having much pain during erections, Mr. Jones suggested we be more aggressive and go directly to Xiaflex if we can get approval by my insurance.

I've been on pentox and sildenfil for just over a week now and haven't noticed any improvement (it's still too soon, of course). I have not yet purchased a traction device, and want to read more on the boards to see which one seems best and possibly get a VED too?
 
Psychologically, it's been very difficult. To think such a simple, stupid sex act could cause such a huge problem! It's like Peyronies Disease has colonized my brain these past months. I keep hoping I'll wake up one morning and it will be gone, although I know that's not how it works. I was in a dating relationship that I've basically put on hold because we are not close enough to go through this together. Mr. Jones is the only person (other than those reading here) that know about my condition.

My immediate questions:
*Should I get a second opinion with a reputable urologist rather than just plowing ahead with this competent-seeming PA?
*Does it make sense to skip Verapamil and go directly to Xiaflex if we get approval from insurance?
*Should I research and purchase a traction device right away or wait until I start the injections?
*How precise do the Xiaflex injections need to be? I felt like the PA Mr. Jones has only a vague idea where the plaque is located, in part because things change so much between the erect and flaccid states. I'm assuming calcification takes longer than the three months I've had Peyronies Disease.

To help me find my way around all the postings, I'd appreciate any suggestions/recommendations on threads others may have seen that are relevant to my case.

Wow, what a huge issue this has become. Really appreciate this community (and suggestions on any other communities where I can research Peyronies Disease).
Logged
53 years old; Peyronies Disease caused by penile trauma March 2019; first urologist visit June 2019; will soon start Xiaflex injections if insurance approves

Bubba dawg

  • Loose Cannon/Hot Air - He posts unreliable information & non-sense - TROLL ?
  • *
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 0
Re: Wow, new and overwhelmed - trying to find my feet
« Reply #1 on: June 16, 2019, 06:44:35 AM »

I don't think bending  your penis like that caused Peyrones. Many of us got this disease in our 50s. Probably already happening. Just a coincidence. Guys get their penises bent in many ways during sex and never get Peyrones. Read up on it. 40s through 60s is when Peyrones usually happens except for jelking or a severe hit during sex. So no need to add guilt to the equation. The cause of age related Peyrones is Unknown according to what I have read and what My Doctor said. Plaque could build up over a long period of time until it reaches the tipping point. Who knows.  IMO
If you are going the injection route then I would go with Xiaflex. You can also do hand modeling or traction with that.. In many situations the Plaque is not visible . Your Doctor will just feel around and inject. That is what mine did. Every doctor has different techniques and procedures.
I had some calcification. But see nobody knows when Plaque starts forming at to when the bend starts or why and when it calcify s  , I didn't wait too long after the pain part to seek treatment and I still got calcification.
You can get pros and cons to every form of treatment. No treatment works the same way for everyone. You just need go with something and hope for the best. Xiaflex worked for me so that is all I can go by. I didn't do traction or diets or anything else. Just some hand modeling
Logged
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

craig3

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 8
Re: Wow, new and overwhelmed - trying to find my feet
« Reply #2 on: June 16, 2019, 09:14:26 AM »

Thanks for these thoughts Bubba dawg. I will do more reading on this as you suggest.

I have assumed that my Peyronies Disease is completely trauma induced from that one time, but I have read that the causes are still unclear and maybe I was having build up already and that trauma set things into motion, but the pain and the sharp curve came about one month after the trauma and so I still believe that that particular buckling incident (it was bent backward in a 90 angle for perhaps 2 or 3 minutes) was pivotal.

Some other things on my mind:
I forgot to mention that I have an hourglass issue about 2/3 of the way to the head of my penis. This seems extra discouraging because I have the sense from limited reading that Xiaflex may not be as good at attacking hourglass formations, and that hourglass formations can block blood flow in more serious ways than a simple bend.

I've always had trouble with circulation to my extremities. My father has been diagnosed with Raynaud's Disease, and I have a similar condition - cold hands and feet in winters. I'm thinking that my lack of good circulation to my penis in the aftermath of the trauma contributed to the plaque formation. For this reason, I'm interested in the pentox and sildenfil because I think it is helping to get better blood flow into the plaque sites. Do others with Peyronies Disease have circulation issues? Maybe there's a thread for that?

I'd love to hear feedback on my question of whether to go ahead with the PA named Richard Jones that I am seeing. He gave the impression that the shots and standard treatments are not rocket science and don't necessarily require an MD. Dr. Brandt comes in when facing deeper questions like surgery.

Utah is not a major city and so we likely lack access to top specialists like Dr. Lue that I've been reading about. I need to do more reading in the section where people recommend care providers.

Still amazed and grateful that this patient forum exists, and amazed at the depth and history. Thanks to everyone reading and commenting out there. Hope I can be a strong contributor and help others.

Am I crazy to not have told anyone except the PA who saw me last week? It's very isolating.... 
Logged
53 years old; Peyronies Disease caused by penile trauma March 2019; first urologist visit June 2019; will soon start Xiaflex injections if insurance approves

TonySa

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4884
Re: Wow, new and overwhelmed - trying to find my feet
« Reply #3 on: June 16, 2019, 01:59:34 PM »

I would ask how. Any injections has the PA done, and how frequently.  Be sure to read the survival guide here: Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
2 Replies
2148 Views
Last post July 31, 2012, 11:51:04 AM
by james1947
1 Replies
1306 Views
Last post March 11, 2016, 04:47:39 PM
by Jonbinspain
13 Replies
1839 Views
Last post August 06, 2018, 08:00:10 PM
by LWillisjr