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Author Topic: Don't know what to do  (Read 530 times)

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Nitrometer2332

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Don't know what to do
« on: August 09, 2018, 12:00:27 PM »

Hello, I am a 47 yeard old single guy who was diagnosed with Peyronies in May of 2018, but the condition has been present for at least 6 or 7 months.  (anybody else hate saying the name outloud btw? I struggle with it... just been refering to it as "the dick thing" 😕)

My curve is to me at least pretty significant, 60deg upward and 30deg to the right, just about right in the middle. Sex is VERY difficult, and really not worth the effort anymore to be honest. That taken along with the humiliation and depression, and along with the length reduction, has kind of made me give up. As much as it is VERY DIFFICULT to face or accept, I honestly don't expect to ever have sex again at this point,

I had my 2cd appointment with my doctor yesterday, and I'm scheduled to begin xiaflex injections
in a month pending insurance approval. But I'm torn if it's worth the bother. I've read several posts on here that just are not very encouraging at best, horror stories at worst. And if I read correctly it sounds like the best one can hope for is about a 17deg improvement, which would still leave me in the 45deg range, which would still most certainly be very humiliating, and I'm guessing would still make sex quite a struggle.

My doctor (Richard Bennett) is I understand a Peyronies specialist and one of the most experienced with Xiaflex in  the S.E. Michigan area where I'm at, and he seems to be encouraging we go that route.  But I dunno, I still am not sure.

Any input or advice from any of your who have been down this road is very much appreciated.

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45, diag May 2018, 40 deg to right & 30 deg up with indentation & hinge effect, pentox & traction (restorex - painful af!), told by uro in Dec 2018 that xiaflex not an option, surgery?, don't know yet

TDix

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Re: Don't know what to do
« Reply #1 on: August 09, 2018, 02:18:48 PM »

Welcome, I am currently on that road, having completed the first round this week.  Will start modeling when the bruising goes down.  I understand your feelings of depression and frustration.  I have the same feelings.  However, you must look at any improvement as a success, however small it may be.  We will all be dealing with this the rest of our lives, and you must maintain hope for advances and future developments.  I'm trying to look at the positives, as the negatives can bring you to a really dark place.  Maintain that hope.  I'm rooting for you to get control of this debilitating condition
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45 yrs old, 1.5 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision surgery March 12th with UCI Dr. Faysal Yafi

Nitrometer2332

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Re: Don't know what to do
« Reply #2 on: August 09, 2018, 03:09:40 PM »

Thnx. I'm trying to not get to destroyed about it, and I'm ok for awhile, but then invariably once or twice or several times a day I'll think about it and back fown to the dark place I go. Whole range from depression, to desperation, to frankly a little jealous of other guys who don't have to deal with this & still have fully functioning "parts", to outright frigin anger at times. This thing SUCKS out loud! Ok that's my rant LOL (semi).

Travdixon - just curious, how long have you had it, or at least been seeing a dr for it, and what if anything did you try before the injections?

Thnx again.

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45, diag May 2018, 40 deg to right & 30 deg up with indentation & hinge effect, pentox & traction (restorex - painful af!), told by uro in Dec 2018 that xiaflex not an option, surgery?, don't know yet

TDix

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Re: Don't know what to do
« Reply #3 on: August 09, 2018, 04:11:28 PM »

I woke up a year ago with a painful erection.  No reason why, so I shrugged it off as maybe I bent it in my sleep or something.  Happened more and more, and I felt a few lumps, which I thought was cancer.  Went to a urologist, who diagnosed me and said I was in the acute phase and to wait it out.  Didn't care for that Dr, so this year, after becoming stable I noticed I had developed a curve.  Went to my current urologist who had actually done my vasectomy years ago, and he was adamant I do Xiaflex if I could be covered for it.  He was "in my corner" I guess you'd say, and turns out he specializes in this condition.  So here I am, a month later, and done with 1 of possibly 3 rounds of injections.  I have a thread where I will keep everyone updated on my progress, if any.  Stay strong bud, I too go to those dark places a few times a day, but you got to focus on the times you are not in that spot.  Sometimes I even feel like I'm a "freak" for having this deformity, but again I have to hope this treatment makes even somewhat of a difference.
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45 yrs old, 1.5 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision surgery March 12th with UCI Dr. Faysal Yafi

Old Man

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Re: Don't know what to do
« Reply #4 on: August 09, 2018, 08:46:53 PM »

Travdixon
Nitrometer2332

Hey Guys:

Read your posts below. believe you me, I very well know what you guys are feeling at the moment. My history of Peyronies Disease and/or Peyronies Disease date way to the 1950s for Peyronies Disease and 1995 for Erectile Dysfunction. Erectile Dysfunction came after a radical prostatectomy in April 1995 which left me totally due to a non nerve sparing surgery.

I have posted this history on other threads on the main forum, so won't go into to details here. However, only to say that much therapy and time spent I am able to get and maintain erections now long enough for any sexual activity that I want to do.

So, I am here to tell you that there is light at the end of the Peyronies Disease and Erectile Dysfunction tunnel. You just have to endure your course of therapy to find one that at least works for you. So, keep the faith, try to calm down with your nerves and seek the best therapy that you can find.

Lastly, try your best to find a good uro qualified to treat Peyronies Disease for some good therapy for Peyronies Disease and/or Erectile Dysfunction.

Old Man       
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Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Open heart surgery 2004 with three bypasses and three stents. Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

TonySa

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Re: Don't know what to do
« Reply #5 on: August 09, 2018, 11:09:51 PM »

It’s great you found an experienced doc w xiaflex.  Try to add traction to maximize the improvement beyond the 17 degrees.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

sutty

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Re: Don't know what to do
« Reply #6 on: August 09, 2018, 11:57:32 PM »

Nitro, just want to add my voice to the discussion.   Like many others here awoke one morning 10 years ago, when I was about your age actually, to a different me.  Felt despondent as you understandably  do right now.  As others have mentioned please try and keep you chin up. What I can tell you is that I have a very rewarding and satisfying personal life and you can too. 
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blackdiamond

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Re: Don't know what to do
« Reply #7 on: August 10, 2018, 07:56:56 AM »

As a sign of encouragement I went thru the whole process.
Xiaflex, manual modeling, VED, and def Traction..............
After approx 8 months of being more aggressive than the protocols ( but careful )
I went from a 75 degree bend to 15 degrees............ My Doc was very impressed.
I would def go for it as long as you are with a good Doc who is experienced.........
Heard too many comments how the results weren't that good because Doc was not very experienced....
Good Luck         
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62 years old
Onset approx 2012
Treatment-- Xiaflex,VED,Manual stretching, Traction
Started with 75 Degree bend and after all treatment
went to 15 degrees........My Doc was impressed

JohnR

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Re: Don't know what to do
« Reply #8 on: August 13, 2018, 09:53:22 PM »

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50 year old, diagnosed in Mar '18, 3 rounds of Xiaflex completed, little improvement, mentally overwhelmed...Erectile Dysfunction issues.
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