Hi all,

I was diagnosed with Peyronies Disease earlier this week by a urologist. I have had painful erections for the last 3 months and recently a very slight indent towards the plaque.

I have been put on potaba (no ill affects yet)...... I was told by the specialist it's newly approved.... However I have since l'earned he is either lying or misinformed.

I have also had my testosterone levels tested and I'm awaiting the results.

I have also started taking natural vitamin e as I have got nothing to lose I guess!

What I wanted to ask about was VED therapy. Should I start it now even though my erections are painful? Would I cause more harm?

I am having  trouble getting an erection at the moment as my confidence is shot and feeling worried and scared for the future. I am 30 years old and happily married with two kids.

I have been reading this forum all week and it's a real help considering the medical profession seem very ignorant to this disease.

I have ordered some viagra to help me overcome the mental hurdle I'm fighting at the moment.

Also since researching the topic I have got my gp to write to my urologist as I would like another appointment asap to discuss my treatment further. I feel I should be on Pentox but at least I'm taking something at the moment to help. I'm not likely to be able to get another urologist appoint for another month due to the nhs here in the UK!

Thanks for reading
J

Sorry you have to be here.   I too remember reading this forum for hours when first diagnosed.  I don't think potaba is new at all.  My uro has prescribed it many times but said almost nobody can finish the regimen and he couldn't assure me that it has helped many people.  I tried taking over the counter Paba which, from what I could figure out, was about the same thing only it didn't have some extra ingredient that drug companies added so they could market it.  I tolerated it fine and took a lot of it, but I couldn't see that it helped.  I think you're right to try to get the pentox if you can. It seems to have helped a lot of us. I would guess even a gp could prescribe it until you see the uro again.  I don't know what other people think, but I'd be pretty careful doing the VED in the active stage, especially if it caused pain. I'm sure others will weigh in.  Best of luck.

The particular study on Potaba was in 2005, shortly afterwards was approved in Germany and probably not much later in the UK. So he's right that it's pretty much "newly approved". But it's not a new drug at all.
The most it does is prevent further progression and help a little with the pain in my own experience... at least if you take A LOT.

I'd say start light VED therapy, just make sure to educate yourself and never over pump, over hold, or allow any kind if stinging.

Quote from: jtroman on March 07, 2014, 01:16:45 PM
... feeling worried and scared for the future.

You are not alone. I am also recently diagnosed with Peyronies and worried about the future too.

You mention that you have pain and a very slight indent. I have read that the pain usually goes away. But I can't say from personal experience because I never recall having pain, just an indentation.

The best way I have found to deal with the worry and uncertainty about the future is to decide what to do and take action.

The real challenge (for me at least) is getting a doctor who agrees with the course of action I want to take. For example, I wanted Pentox but my urologist flatly denied the request.

So, bottom line, change your worry into a plan of action.

Thank you all for taking the time to reply.

I think a lot of my anxiety is down to the pain I currently experience (not intense but distracting nevertheless). Also also after reading about the treatments, I am worried I am on the wrong one and I don't have the time to be waiting around trying to get an appointment with the specialist.

For those of you refused Pentox from your urologist, what avenue have you perused after that? Persistence with the same specialist or refer yourself to a new one?

In the meantime,I am going to go get some Acetyl L Carnitine and L arginine today.

Quote from: NeoV on March 07, 2014, 07:35:46 PM
I'd say start light VED therapy, just make sure to educate yourself and never over pump, over hold, or allow any kind if stinging.

Regarding the VED, when you say light therapy..... Do you mean pump to 50% or 75% and no further due to my current pain?  I tend to get the pain only on full erection.

Thanks again for taking the time to read.
J

Quote from: jtroman on March 08, 2014, 01:25:54 AM
... For those of you refused Pentox from your urologist, what avenue have you perused after that? Persistence with the same specialist or refer yourself to a new one?

My urologist refused to prescribe Pentox after I requested it last week.

So I considered going to Dr. Lue who is about 100 miles away from where I live. He did some research on Pentox, which you can find on this site here: https://www.peyroniesforum.net/index.php?topic=772.0

In the last paragraph of his case study titled "Treatment of Peyronie's disease with oral pentoxifylline" he states that "an hourglass deformity remains owing to inelasticity of the tunica albuginea at that site...".  So I decided to give up on my quest for Pentox because I have an hourglass indentation also.

However, Jtrotman, if I was having painful erections like you I would probably continue in my quest for Pentox.

brettcase

Maybe you understand wrong Dr. Lue sentence.
Don't give up on Pentox.
My hourglasses gone while on Pentox.

James