Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: Stepone on January 17, 2015, 10:08:38 AM

Title: Hello, Keith from York Pennsylvania
Post by: Stepone on January 17, 2015, 10:08:38 AM
I have read a lot of stories and sadly it seems we all face very similar things.
Our spouses don't know what to say or do.
When we visit a urologist, they don't know what to say or do.
And when we visit the internet, everyone tells us what to do, LOL.
Well here is my story.
In May of last year, I notice a small nodule that was sensative and deep inside my penis and just thought I hurt it with rough sex.
In October my penis started to bend and started to indent on the side where the nodule was, so I made an appointment with a urologist.
This was a terrible experience, first I was nervous as hell, he asked to see my penis, and then it seemed like he was almost afraid to feel it for the lump. I had to guide his fingers to it. And then he said oh ok, it's Pyronies Disease, drew me a picture of the problem on a piece of scrap paper and said there is nothing really I could do with it, as nothing seems to work.....and I was dismissed.
I left and thought what the hell had happened?
I started searching on the internet, and started reading and reading and thought, why didn't the urologist tell me about this stuff?
In December I met with another urologist. This urologist seemed less scared to talk about it, he found the lump immediately and said Pyronie's Disease is a difficult thing to treat. It's not uncommon, but most men don't like to talk about it. He gave me a prescription of Potaba and said, let's try this, come back in 3 months or sooner if it gets worse
Title: Re: Hello, Keith from York Pennsylvania
Post by: Stepone on January 17, 2015, 10:24:12 AM
I hit the enter key too soon.
Well my penis seems to be getting worse, the indentation seems to be larger and the curve more drastic. I know, I plan to take some photos tomorrow when I have some alone time so I can really see what's happening with it.
A couple more things, I am 62, in pretty good health, no blood pressure problems and have some arthritis and back pain that I manage with Celebrex.
I don't get morning hard on's anymore and need viagra to get hard enough to engage in penetration sex. i also started using a cock ring, not sure if this is helping.
Although my partner hasn't said too much, it is difficult for me to keep my erection during the entire process, although I do manage to ejaculate, but as soon as I do, my penis deflates pretty quick.
I have started taking some herbal testosterone supplements and I don't know if it's the Potaba or the supplements but I woke up with a semi hard on this morning for the first time in almost a year. Not sure why.
I did buy a penis pump yesterday, tried it a few times, never get totally hard, but hard enough to penetrate if I needed to. I pumped only a little while and released, a few times. From what I read, I think I should start off slow and not for more than 20 seconds or so at a time.
I think I need to see a different urologist in a major city, I looked at urologists that belong to the Peyronies disease society, so i will make an appointment there.
All this is so overwhelming!
Open here to suggestions, comments,
Title: Re: Hello, Keith from York Pennsylvania
Post by: nemo on January 17, 2015, 10:31:05 AM
Stepone, sounds like you're experiencing the all-too-frequent Uro experience for Peyronie's sufferers. Many if not most Uro's are woefully ill-prepared or just plain ignorant when dealing with Peyronie's. Their specialty is surgery, and anything that is not life-threatening, doesn't prevent you from peeing, and isn't going to result in a surgical intervention simply doesn't arouse their interest (for most). Potaba is an antiquated treatment - almost as antiquated as Vitamin E. 

As you've seen here, there are better approaches, like the VED, Pentox, daily Cialis, etc. I'd suggest you try to find a better Uro, or frankly even a GP, who is more "with it" when it comes to Peyronies Disease.

You're navigating a well-worn trail, I hope that offers some small degree of comfort. Most of us have been through what you're going through. Hang in there.

Title: Re: Hello, Keith from York Pennsylvania
Post by: Stepone on January 17, 2015, 10:48:29 AM
Thanks for your reply.
I know after reading what everyone says, it's tough to go through this without support. It is depressing.
My gp is very nice, a woman, not sure if she would be comfortable with it, but I can talk with her freely and I don't even know if she would know a good Pyronie's Disease urologist, but it's worth a try.
Is Pentox really the best drug for treating? I will bring this up, as soon as I meet with a new urologist, but Pentox is so much cheaper than Potaba, why wouldn't my last urologist not suggest Pentox? I am not trying to be a smart ass, but I am trying to understand.
Title: Re: Hello, Keith from York Pennsylvania
Post by: NeoV on January 17, 2015, 07:43:17 PM
I will second Nemos post. Vitamin E and Potaba are old treatments. Potaba however, may help, but is hard on the liver and appears likely to induce hepatitis.

The standard treatment now is Pentox, low dose cialis, and as for non drugs, CoQ10 300mg a day (ubiquinol if over 40), Acetyl-L-Carnitine 2g a day,and perhaps arginine or citrulline. Anything that can reduce the size of the plaque and general penile health will be useful. The above drugs / supplements are those that were scientifically shown to help with Peyronie's in at least 1 study.

After that you have the physical therapy aspect of the disease which boils down to VED therapy and traction, I recommend both but you need to exercise extreme caution. Still, I'd say don't wait to get a single cylinder VEDA and try it. Get a reaction device as well, but most important, do your own research, research these boards, and be careful with whatever you do. Feel free to ask away and use the search function when viewing all forums to find stuff.
Title: Re: Hello, Keith from York Pennsylvania
Post by: nemo on January 17, 2015, 09:18:25 PM
Stepone, Pentox is used "off label" for Peyronie's, meaning it wasn't designed for Peyronies Disease, but has been found helpful. Some doctors, for liability reasons, are scared to prescribe off-label.  However even more likely is that your Uro isn't even educated about the leaders in the field using Pentox for Peyronie's. The combination means most Uros just don't have a clue. But I will say this, they're slowly coming around.  When I developed a recurrence in 2013, both my GP and Uro were good with the use of Pentox. Several years ago, you really had to hunt to find anyone willing to prescribe. That's changing slowly.

Title: Re: Hello, Keith from York Pennsylvania
Post by: Stepone on January 21, 2015, 05:11:24 PM
I have been stretching my penis a little with a penis pump, while taking the Potaba. Of course nothing is happening, but I feel like I am keeping my penis from shrinking anymore until I visit my 3rd. urologist on Feb. 2, his name is Dr. Burnett at Johns Hopkins Hospital. I found his name on the "Association of Peyronies Disease Advocates. This site is not a forum, more of an informational site, with discussions by physicians and referrals.