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Author Topic: Progress Updates  (Read 3617 times)

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NDfan

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Progress Updates
« on: June 06, 2013, 01:36:23 PM »

This may not be the right place on the forum. I really want a one-stop shop for what people are using as their treatment and what their progress has been. I'll go first. I was diagnosed in January and had about a 45 degree left bend. I started verapamil cream and quickly stopped after reading that it does nothing. Since then I've used Pentox, L Arginine and just bought a little CoQ10. I've had no improvements - worsening if anything. I haven't pursued traction or VED because they both seem like a lot of inconvenience for hardly any chance of improvements. Not entirely sure where to go from here. Reading online just makes your head spin.
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Njnist

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Re: Progress Updates
« Reply #1 on: June 06, 2013, 01:47:28 PM »

After starting to experience pain the march before last, I saw two different uros. When I mentioned peyronies (I didn't know much about it - wish that was still the case) they said they couldn't feel any scar tissue and suggested I take NSAIDs. The pain improved a bit for some time then got worse again. Eventually about 9 months after first noticing the pain I started to notice the top of my penis near the head was a bit harder, and a month later the curve began. It started at about 10-15 degrees and the pain was subsiding a bit. I saw my uro and he confirmed what I already knew. At this point I started taking vitamin e and ALC. About 1.5 months later I reinjured it a bit and the curve got worse from their, now at about 25 or so (i am estimating). In that time I started taking Coq10 and now I take Arginine as well and fish oil as well as a b complex. I don't take the E as much since it does not seem to have any backing. I wasn't noticing much change until recently when the hard pea sized plaque seems to have flatted out and reduced in size. Not sure if that is a good or bad sign but I am continuing with what I am taking. I am still in the first 18 months of the disease (now at 15 months) and I have pentox on the way and will report back when I start it. I haven't checked my angle recently as I am trying to take it easy on the thing (my blood flow is good though so I am not worried about getting frequent erections). I originally looked into VEDs a few months ago but decided since I am still in the active stage I do not want to go down that route yet, as I am afraid of reinjuring myself. I do do a little bit of massaging but not much shaping as I feel that I might make it worse. I am young so I am hoping I can keep this thing stable where it is for now and then decide where to go once it becomes stable.

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NDfan

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Re: Progress Updates
« Reply #2 on: June 06, 2013, 02:33:46 PM »

Thanks for the info and good luck. I remember the pea sized plaque near the head. It eventually became almond sized. That's not my main concern anymore. It's the huge cement like plaques at the base that are causing the turn. I'm young too - 29.
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Njnist

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Re: Progress Updates
« Reply #3 on: June 06, 2013, 02:43:26 PM »

Hey good luck to you too, 95 percent of the world will never understand what we are going through. I am 26 and the first two urologists said I was too young to have peyronies...wish they would've diagnosed me earlier so I could work on it! It's funny that the first uro I visited was also the uro that initially diagnosed it when I told him of curvature but he acted like having it young was a good thing.
Anyways, have you made any dietary changes because of the peyronies?

Also, with regards to pentox, I remember reading on here that dr lue mentioned that about 10 percent of patients on pentox actually worsened instead of improved....how long have you been on the pentox?
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dioporcolorisolvo

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Re: Progress Updates
« Reply #4 on: June 06, 2013, 02:56:27 PM »

Hey good luck to you too, 95 percent of the world will never understand what we are going through.
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I've written to dr Lue to understand last point and i'm waiting for an answer, because pentox seems to worsen condition also to me. I'm 30 years old and i've disease since 2 years and half.
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NDfan

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Re: Progress Updates
« Reply #5 on: June 06, 2013, 03:11:56 PM »

No diet changes. I've ramped up working out to stay healthy. I've read far more positive than negative responses to pentox. 10% probably happens with any treatment
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Jonbinspain

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Re: Progress Updates
« Reply #6 on: June 06, 2013, 04:34:04 PM »

I guess anything is possible. However, I suspect that those whose condition has worsened, has done so DESPITE the Pentox, not BECAUSE of it.
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dioporcolorisolvo

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Re: Progress Updates
« Reply #7 on: June 06, 2013, 10:19:35 PM »

However, I suspect that those whose condition has worsened, has done so DESPITE the Pentox, not BECAUSE of it.

NO. I say you that when i take pentox, condition worsenes. Not DESPITE, but BECAUSE.
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NDfan

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Re: Progress Updates
« Reply #8 on: June 07, 2013, 09:04:29 PM »

I disagree. When I'm on pentox, no pain. When I'm off it, pain. I pay $5 copay per month. Very worth it
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james1947

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Re: Progress Updates
« Reply #9 on: June 08, 2013, 04:30:00 PM »

Unfortunately, like everything with Peyronies.
What works for one (or even many) is not a guarantee that it will work for all.
Sorry Dioporcolorisolvo that Pentox didn't helped and even worsened your situation.
It helps me a lot.

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
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