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seekinginfo

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New guy
« on: September 14, 2017, 10:58:15 AM »

Few interesting things- at least to me anyway.. first some background-
60 y/o white male; noticed a curve developing in my penis about 10 months ago that seems to have worsened and is now about a 45 degree bend. No injury/trauma that I can recall, no pain flaccid or erect. Due to other non-medical circumstances, was only able to have sex a half dozen times in that time, and only recently started to feel uncomfortable, thinking my penis might bend during intercourse and I may further damage myself. Don't know if it's my common sense warning me or if it just got in my head. No ED issues to date.
Interesting thing #1
Had my 1st doctor appointment yesterday at a large and extremely reputable urology practice. I sold pharmaceuticals to this practice and urologists over a 3 state area for 20 years and was aware of their reputation v others throughout the region. Selected a Peyronnies focused doc based on the info on the Xiaflex website and some other resources. On manual exam, doc said I had a lot of calcification pretty much around the base of my penis. My surprise was when he told me that I had this problem for probably more than
a few years, even though the bend only became noticeable recently. We discussed all the options that most people are familiar with here, and said that with the amount of calcification, I'd never be like normal again, but he and I would work on gaining some improvement. Disappointing, but I'm still functional, and as much as a bent penis bothers me, there are a lot more people with a lot more serious problems than this out there.Even though I don't have ED issues, he prescribed Viagra and explained that maximizing the firmness of erections can/may help stretching plaque etc. As I responded
back, it could also exacerbate existing issues... we'll see. He wanted me to reschedule for 6 months out, and we'd discuss ramping up therapy and discuss the Xiaflex shots.
Interesting thing #2
I registered on this site a month or so ago, and I've lurked on this site gathering as much info as possible and am thankful for the direction, opinion and advice offered, and have reviewed information on the End/Xiaflex site. While listening to Pandora, there was an advertisement sponsored by Endo/Xiaflex addressing Peyronies Disease. Endo is a relatively small company, so they don't have the money for broad advertising. Somehow I was specifically targeted for their ad either from reading stuff on their site or somewhere else- completely anonymous and not registering for anything. I found this- especially given this condition- to be extremely invasive and inappropriate.
Interesting thing #3
So I'm now getting targeted ads on Pandora, but the other day I opened my mail box to discover a packet of information congratulating me on being selected for the Xiaflex patient assistance program which included a card that would held reduce my co pay once I started therapy. Wow- again I haven't registered for anything anywhere, and tend to use my private browsing setting when cruising the internet.
Anyhow, with an official diagnosis, I'm now on the Peyronies Disease journey and looking forward to contribute what I can.




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Jonbinspain

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Re: New guy
« Reply #1 on: September 15, 2017, 02:30:02 AM »

Re Xiaflex:  I too had calcified plaque and had to resort to surgery to get any result.

I did consider Xiaflex, but before doing anything I emailed the manufacturer to tell them my problem. Their honest answer was that they didn't know if it would be effective against calcified plaque as it had not been included in their trials. So I'd consult your Uro on that one.

I'd suggest you study the sections on traction and VED. Both may be beneficial to your condition.
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kuaka

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Re: New guy
« Reply #2 on: September 15, 2017, 05:59:14 PM »

Yes, google captures your searches.  "Private" settings on your browser do not stop that.  Use a different search engine...Startpage, DuckDuckGo etc...

Obviously your case advanced to a certain point before presenting enough symptoms to concern you.  I would recommend VED as a way to expand the Tunica as far as it ought to expand frequently in order to prevent it from worsening.  Learn as much as you can here, and implement what seems appropriate to your situation.  Listen to your body.  You may also consider rethinking your diet completely.  I have recently started down the road called the Root Cause Protocol over at gotmag.org, which is road map on how to undo the damage a traditional Western diet does, which includes magnesium deficiency.  MG deficiency is only one aspect of a bunch of stuff which is out of balance. These out of balance conditions contribute to all manner of disease, including fibrosis conditions such as Peyronies Disease.

Best of luck to you.  When a Dr. says that you only have one choice, get a second opinion.
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