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Author Topic: New Here - Any Advice Would be Greatly Appreciated  (Read 1621 times)

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ProfessorFrink

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New Here - Any Advice Would be Greatly Appreciated
« on: April 25, 2017, 08:18:02 AM »

I'm 44 years old.  Started have curvature about 6 months ago but because it wasn't severe and not causing me pain or an inability to have intercourse I ignored it till about a month ago.  I wish I hadn't done that. 

First urologist I saw said the only treatment he does is Xiaflex and wants me to wait 6 months until everything is stable.  He told me to start taking 400iu Vitamin E twice a day.

Second urologist did a physical exam and stated he could feel the plaque and put me on the topical transdermal verapamil from PDlabs.  I have been on this for about a week.

I started reading this board several days ago and now I am confused on what to do and am concerned the two urologists I have seen aren't treating me properly.

I know you aren't doctors but you have alot of combined knowledge on this topic so any advice anyone on here could give would be greatly appreciated.

Thank you.
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MeMo

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #1 on: April 25, 2017, 09:01:08 AM »

Hey Frink;
you are in right place you can find whatever you should know about Peyronie's. unfortunately, there is no confirmed cure for Peyronie's (even the exact reason of that is kind of unknown).
As you are in active phase of Peyronie's it is very important for you to avoid calcification, oral treatment (pentox-Potaba-antioxidants can help).
an ultrasound could determine plaque situation (classified or not,  how big it is), personally, I think the first priority should be reducing the size of plaque and after active phase trying recover deformities.
Be careful about any kind of injections (xiaflex-varampil), so many Peyronie's cases started with injections.
I think in first step oral treatment could be the best choice.

regards.
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ProfessorFrink

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #2 on: April 25, 2017, 09:33:21 AM »

Should I be starting VED or Traction therapy right away?
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skunkworks

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #3 on: April 25, 2017, 09:39:45 AM »

If your bend/dent is still changing, you are in the acute phase. Traction is beneficial in the acute phase - https://www.ncbi.nlm.nih.gov/pubmed/24261900

I cannot say with any certainty whether or not VED usage is beneficial in the acute phase, but my personal opinion is that it would be as long as you are very conservative with pressure.

Topical transdermal verapamil will probably do nothing, so discontinue if the cost is a bother for you, continue if the cost is negligible for you.

I think it would be too early to consider xiaflex personally.
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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Toronto34

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #4 on: April 25, 2017, 10:33:34 AM »

Welcome to the forum. I am relatively new here as well and this place can be very helpful but overwhelming at times. There’s lots of different advice given out, some of it contradictory. Try not to take in too much at once. I’ll give you a basic overview of what I’ve learned in 2 months here:

The general consensus is that the best oral meds are Pentox (trental) and Cialis (tadalafil). The higher the dosage of Pentox the better, up to 2400 mg a day maybe more. Of course that will depend on how much you can tolerate side effects (it’s generally well tolerated but not always). While Cialis is usually 2.5-5 mg a day. This also can come with side effects (it gave me bad neck/shoulder pain).

I don’t claim to understand how they work, but generally they both increase blood flow to the penis, which is key to reducing/preventing plaques. Pentox/Cialis are usually also taken with L-Arginine (over the counter supplement) and this cocktail is recommended by some top American Peyronies specialists (Dr. Lue and Dr. Levine). A lot of guys have trouble getting a Pentox scrip because treating Peyronies is an off-label use for it. I’ve read that sometimes guys will bring Dr. Lue’s research to a uro or GP to help get one.

Vitamin E is considered harmless but useless. I have not researched Verapamil too much, but the reviews here have not been great. There is sub-forum dedicated to it you might want to check out.

Other popular supplements are Acetyl-L-Carnitine and CoEnzyme Q10. While VED and traction are also popular. I have used neither, but you might want to read up on them in their respective sub forums. I believe a fair number of people have reported improvements with curvature and regained length using traction. VED helps with hourglass shape, lost girth and stimulating blood flow to the penis. These are often used with oral meds/supplements.

Aside from that you might want to look at dietary changes (an anti-inflammatory diet is what I am working on), exercising, stop smoking (if you smoke), cut down or quit drinking (if you drink) and generally living healthy. As I understand it, surgery and Xiaflex are only options when Peyronies has stabilized and only if the degree of curvature makes sex difficult/impossible.

Finally, There are differing views on whether sex/masturbation are good or bad, but if you do engage then make sure you’re doing when FULLY erect, not partially, and no rough stuff. Guy on top is best for sex and if something seems to be causing you pain or inflammation, then avoiding it for a while might be best. Erections are definitely good as the blood flow thing is important so don't stifle those.

There’s a lot more information buried in this forum from more informed people than me, but those are my Coles notes. Best of luck!
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MeMo

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #5 on: April 26, 2017, 07:20:06 AM »

Frink;
Using traction-VED it is controversial, many members think it helps, personally, I think it is double-edged.
there is no certain and confirmed thing about Peyronie's, the most probable reason of Peyronie's is micro-injuries so avoid any thing that increases injury risk (rough sex, female on top, any position which makes penis bent, sex with a not totally erected penis, uncontrolled VED-Traction) and do whatever you think helps the blood flow and healing process (improve overall health condition, controlled VED, meds, antioxidants).
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skunkworks

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Re: New Here - Any Advice Would be Greatly Appreciated
« Reply #6 on: April 27, 2017, 02:46:15 AM »

Using traction-VED it is controversial, many members think it helps, personally, I think it is double-edged.

Traction is easily one of the most evidence based treatments in existence for Peyronie's. There is nothing controversial about it amongst those well versed in treating this condition.
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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]
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