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Author Topic: In Phase One of Peyronie's, Anything I can do in this stage?  (Read 1686 times)

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JSmith3010

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I am 30 years old.  I began noticing a small nod, lump inside the head of my penis about maybe 6 months ago.  Over a few weeks it moved down the shaft and settled in the middle, length and width-wise.
At this time I went to a Physician thinking it might be cancer, because it hurt, and was told to go to a Urologist.  I didn't go hoping it would get better.
Over the past couple of weeks it has become obvious it is Peyronie's.  The spot has turned into a ring like band of hard stuff (the plaque), my old curve has disappeared and a new direction is forming.  The band area is starting to cave in kinda.

I'm losing my mind.  In my head I picture my case getting as bad as pictures I see.  Mine used to curve downward near the head, if it starts bending upward significantly around the plaque, I'm going to consider becoming a monk.  The Urologist, yesterday, told me there is nothing I can do until it settles, until Phase Two starts basically.  He told me about Xiaflex, after I told him about it, and said first trials in TN are available in July.  He put me on the list, supposedly.

So here I am..  a single 30 year old losing my mind.  I can't keep reading about this, I keep forcing myself but I always get sick and stop. 

I'm hoping someone has some advice to directly give me, maybe things I can do to prevent my case from blowing straight up.. heh.  A joke, but seriously, if I can prevent my penis from looking like a L and then maybe getting the Xiaflex treatment maybe I won't cry my eyes out everyday for the rest of my life.

This sucks, I feel for all of you.  Life is hard, but this is ridiculous.
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emasculated

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Re: In Phase One of Peyronie's, Anything I can do in this stage?
« Reply #1 on: May 31, 2014, 03:51:55 PM »

Pentoxifylline has some proven efficacy 2-3 times daily 400 mg for at least 9 months. And daily Cialis of 2.5 - 5 mg.

I personally like Ubiquinol, it has helped me.

It is of course always a question whether you tolerate the medication and for how long.. The benefit can be good, minimal or non-existent.
There is currently no approved oral treatment for Peyronie's. Here in Germany they have Potaba approved. It works only at the very early painful stage without curvature yet.
I would think twice about surgery or injections like Xiaflex. To me the data just doesn't look good enough (yet?) to justify the risk. There is no real research being done since there is no money. So we're pretty much going to have to deal with this crap till we drop. Sad truth!
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"Without health life is not life; it is only a state of languor and suffering - an image of death."

james1947

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Re: In Phase One of Peyronie's, Anything I can do in this stage?
« Reply #2 on: May 31, 2014, 05:24:50 PM »

JSmith

I will add to emasculated advice a few of mine.
First, you need to go to a Peyronies specialist and not a regular urologist, most of them don't understand in Peyronies.
You need to be diagnosed and start treatment as soon as you can.
VED, Pentox, low dose Cialis and CoQ10 will be a good treatment start.
In my opinion Xiaflex shows good results, but I agree with emasculated that you should not rush to it, give a chance to oreal treatments and VED.
Careful with the VED no to over-pump.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe erectile dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Caesar

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Re: In Phase One of Peyronie's, Anything I can do in this stage?
« Reply #3 on: May 31, 2014, 09:14:05 PM »

JSmith, reading you is, in some aspects, like reading myself. I am 31 years old and I have the same feelings regarding the first symptoms I'm experiencing. I mean, I tend to depict myself in the worst scenario too, and sometimes I find myself paralized by fear and frustrated by the very same message I received from my urologist.

I noticed the first symptom 6 months ago as well and I cannot stop reading as many papers as I can, linking conclusions and ideas in order to comprehend the reasons why I'm suffering this condition.

I guess we must accept rapidly that we're affected by a disease that needs us to take action soon in order, at least, to increase the probability to stop its progression.

So lets try not to get stuck in our grief, lets shake the dust off our minds and lets move on to grab the bull by the horns! Ok?

Focus on this article and leave other readings for later. I've met an urologist and started taking the over the counter supplements suggested in it plus vitamin E (yes, I know it probably does nothing but at least I have the feeling that I'm not letting time pass by without doing anything). Now I'm looking for a Peyronie's specialist and I'm already receiving psychological support to cope with this situation.

Forget about the monk thing. Life is full of magnificent experiences and moments to experience besides sex (and I know and mean what I say). And... what the hell! It is soon to think already about that: 14% of the cases resolve spontaneously and other 40% don't progress further once the acute phase has concluded.

Follow veterans' advices and let's act.
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UrsusMinor

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Re: In Phase One of Peyronie's, Anything I can do in this stage?
« Reply #4 on: June 01, 2014, 12:44:13 AM »

The Urologist, yesterday, told me there is nothing I can do until it settles, until Phase Two starts basically.

Well, he's the doctor and I'm not, but frankly I think he's completely full of baloney.

Yes, you should probably wait until things have settled before doing surgery or Xiaflex*, but those are the last options I'd be considering. It sounds as if they are the ONLY options he's considering.

And there is certainly a lot of anecdotal evidence that the time to act is now. Essentially he's advising you: "We shouldn't do anything at all until it gets as bad as it can get." If an oncologist gave people that advice about their cancer, they's drag him out of his office and hang him.

---------------------------
Speaking of Xiaflex, have you seen these lovely pictures of the possible side effects?:

http://xiaflexpoison.blogspot.com/

Get another urologist, and also take a good look through the posts on this forum. No one can guarantee anything, but there are many many things you an do to take control of of your situation.

Best of luck!
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