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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

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Author Topic: World Now Upside Down - Hello There!  (Read 223 times)

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FlyGuy876

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World Now Upside Down - Hello There!
« on: June 22, 2022, 06:48:38 PM »

Good evening and hello everyone!

I stumbled across this site as I was researching this awful disease that I have been diagnosed with and discovered a few months ago. Based on my research, I guess this has been "progressing" without me really noticing. I have had two urologist visits with a Peyronies Disease expert here in Florida. I have had an ultrasound done, which was quite the experience I must say. I am 45 years go age, Type 1.5 diabetic and due to an injury during sex with my wife, I am about 30 degrees to the left. It has emotionally affected me and my erections and my confidence as a man. Heck, I could barely even tell my wife I felt so ASHAMED! I also have started to wonder if my erections were not as good as they were in my 30's now that I am dealing with this. May need to start popping the little blue pill as this clearly has affected our intimacy and my erections/confidence.

With all that being said, I have a very small plague that I found doing a self assessment and he too has confirmed it is the cause. He has given me two options for treatment. XIAFLEX injections or penial plication. He states loss of length would be 1cm from surgery and that as long I obtain from sex (like 6 months), really only pain and swelling from the injections despite all the scares on the pamphlet. I meet with him in a week to decide which path and finally able to get around to do some research. I will not make the decision next week if not quite certain on my research.

Hoping to be able to get my questions answered here as my head is going a mile a minute on whether I go with injections (ouch) versus surgery. Only up side to surgery is I could get snipped too. 2 for 1 deal! But one of my biggest concerns is if I have the surgery and the Peyronies Disease's scar heals itself. Then we are now going the other way. Maybe I am dreaming that it will just go away.

Well, enough about me as we are all here for the same issues. if you have some thoughts or questions, reach out and let me know. UGH!!

Lastly, Thank You in advance.
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chrisaaa7

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Re: World Now Upside Down - Hello There!
« Reply #1 on: June 22, 2022, 07:00:13 PM »

I would recommend starting with xiaflex for a 30 degree curve. Surgery is usually for more extreme cases from what I have seen and is a little riskier. Xiaflex has risks itself as well and that’s when you have to look at pros and cons. Surgery is more invasive and usually for more extreme cases. Even if xiaflex lessened the curve to 15 degrees that would still put you in good shape.
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M 21 Los Angeles

Saw Urologist at USC who handles Peyronies alot and he does not believe I have it. Symptoms: soreness in flaccid state, glands do not engorge, 2 very small. indents, slight girth loss( last 2 might be mental),Erectile Dysfunction for 2.5 years

FlyGuy876

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Re: World Now Upside Down - Hello There!
« Reply #2 on: June 22, 2022, 08:14:13 PM »

One of my biggest concerns with surgery is if the scar tissue, which is small, goes away on its own. Then we are going the other direction and plication cannot be undone. How was your experience with Xiaflex? I am ok to abstain from intercourse with my wife while I hopefully get fixed as that itself seems like the biggest risk besides the pain and swelling and such.
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GaussRifle

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Re: World Now Upside Down - Hello There!
« Reply #3 on: June 22, 2022, 08:52:02 PM »

For a 30 degree curve, I would not recommend Xiaflex. Restore should be sufficient to get you around 20 or less.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

FrankPD

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Re: World Now Upside Down - Hello There!
« Reply #4 on: June 22, 2022, 10:58:09 PM »

Just wanna say welcome to the forum, it’s a great place to be.  The search feature is extremely accurate!  Give it try.

Best to everyone!

Frank
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Age 46
No injury.
Diagnosis January 2022.  
Have plaque and hourglassing. 
Still have my congenital curve, no severe curving.
Massaging with vitamin E cream twice a day. 
Low carb diet.
Discomfort/aching sometimes.
Best to all.

FlyGuy876

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Re: World Now Upside Down - Hello There!
« Reply #5 on: July 13, 2022, 08:49:19 PM »

So I had a follow up tele-health visit two weeks ago and he said I am about 45 degrees. So my notes and thoughts were totally wrong. He still said surgery or Xiaflex as my best options and in his experience has never seen this go away on it's own. Thankfully I am pretty busy with life, work, family because when this stuff pops back up in my head, it takes just wears you down. Need to somehow make a decision after more research and not look back.

Leaning towards Xiaflex but man that crap sure sounds scary. 
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FrankPD

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Re: World Now Upside Down - Hello There!
« Reply #6 on: July 13, 2022, 10:11:18 PM »

It is truly scary.

I’m in my 7th month and my only real issue is hourglassing and discomfort from the plaque daily half the week.  No curve. I hope it don’t progress.  When I get back from my vacation, I’m going to try the manual traction from Neo’s video. 

Good luck.
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Age 46
No injury.
Diagnosis January 2022.  
Have plaque and hourglassing. 
Still have my congenital curve, no severe curving.
Massaging with vitamin E cream twice a day. 
Low carb diet.
Discomfort/aching sometimes.
Best to all.
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