Uncertaintly Is Very Painful

[usapd]

I was diagnosed last Friday by my GP.  I have an appt. with a Uro in one week.  I've been aware of my symptoms for about a month.  Partial ED, cord like feeling in penis, crooked erections in the night, first time experienced any pain with it and quite frankly afraid to look and assess the damage, feel like things are shrinking...  

I've stopped all smoking and drinking, hitting the gym every day - this is resulting in the night time erections...  I think this is good, but feeling like I'm just wasting away till next week...

Going to get on vitamin E and Ibuprofen today.

Any other suggestions until I see the Uro. in 7 days.

Thanks USAPD

[nemo]

Not sure there's much you can do in only seven days, but be prepared for the potential that you get a Uro who is unhelpful - who wants you to "wait and see" or just says, "there's nothing that can be done."  Read up on the best treatments offered right now: Pentox, Cialis, VED usage.  If your Uro poo-poos these, be polite, thank him for his time, and promptly find another doctor. There's no sense dealing with an ill-informed Uro. For instance, if his recommendation is "Vitamin E" - that's a sure sign you've got an ill-informed Uro.

On that note, as far as vitamins/supplements, you won't find a lot of supporters of Vitamin E anymore - it's an old treatment that never proved any results. The better alternatives these days are L-Arginine, Acetyl-L-Carnitine, CoQ10, and things like that - you can read about them on the forum too. Vitamin E is largely considered a waste of time anymore.  

Keep your head up - everybody here is dealing with Peyronies Disease and has walked the path you find yourself on. The vast majority of us are still sexually active/capable, so don't assume it's a death blow to your sexuality - it's not. Find a strategy for improvement.  

Best,
Nemo

[usapd]

Thanks Nemo, I appreciate your words of encouragement. My world has been turned upside down. As a 50+~ yr old male who is a few years removed from a negative 24 yr marriage, I was/am just getting back in the game.  Now this.   I When I first saw the symptoms, I thought well maybe I need to start taking one of those well advertised pills from time to time.  I had no idea.  No idea at all.

[nemo]

Most of us had never heard of it until we developed it. I, and probably many others, felt a bump, immediately thought "cancer!," and then got online and learned about Peyronie's. I developed it at 30, and am now 43. You're 50+. But know there are 18-20 year olds on here who develop Peyronies Disease and have barely even had a chance to use their penis at all. It's those guys we really have to take care of.  

Nemo  

[james1947]

usapd

I don't think that somebody was aware about Peyronies before it stuck.
If you have a healthy penis, you are not trying to find out what are available penis diseases.
Also your friends and family will not run to tell everybody if they have Peyronies.

James  

[usapd]

I developed it at 30, and am now 43. You're 50+. But know there are 18-20 year olds on here who develop Peyronies Disease and have barely even had a chance to use their penis at all. It's those guys we really have to take care of.  

Nemo

Nemo

I know, as I get through the initial trauma of this, get on a course of action, and gain a level of acceptance...  I hope to paid it all forward to you guys, especially the younger ones...  Someday, I'll tell my kids, what a blessing to have fathered them... Need to keep things in perspective.

[nemo]

You got it, friend - perspective is key. Can be hard to achieve, but something we should aspire to.  

Nemo

[usapd]

Not sure there's much you can do in only seven days, but be prepared for the potential that you get a Uro who is unhelpful - who wants you to "wait and see" or just says, "there's nothing that can be done."  Read up on the best treatments offered right now: Pentox, Cialis, VED usage.  
Nemo

Thanks Nemo - I just emailed him and asked his thoughts on about Pentox, Cialis, VED usage and his experience with Peyronies Disease.  I won't hesitate to find another, I don't want to waste a single day.

[james1947]

usapd

Please replay by click on the "REPLAY" button and not on the "QUOTE" botton.
Please read the forum rules regarding quotes.

James

[usapd]

Done - Duty noted James.

PS. thanks for your support.

[NeoV]

Since my father warned me about the disease (he didn't mention the genetic link), and told me he had it, I was fairly sure I had it at 18. Even then though, no urologist or doctor I saw believed me. Only after worsening it became apparent to them. The disease is so subtle and hard to describe even knowing a bit about it is never really enough. I'm still plagued by uncertainty and confusion because of how strange it all is.

Nemos advice is great. Get on the supplements / drugs that count, see a world class specialist as soon as possible. Consider traction and VED therapy.

[usapd]

RE: but be prepared for the potential that you get a Uro who is unhelpful

Boy you guys called it - here is the dialogue with the original Uro.  I now have re-scheduled with the chief of staff.  Lets see where that goes.  Have also request Cialis from my GP. Got to start somewhere!

Uro Reply to me

Hello,

Peyronies disease is a common problem for men, and can be very difficult to treat. In the acute phase, there are no really good options, and treatments I recommend are only done after the acute phase has resolved, and these are invasive. You will need to take pictures of the erect penis from at least 2 different angles, on your phone camera, for us to see at the visit. I do not treat a great deal of peyronies, but I am a board certified urologist and my information is on the KP website, I have seen it there. If you would prefer a more experienced urologist, you can call to change the appointment, though there are very few urologists who specialize in peyronie's itself.

Regards,

Dr. X

My Msg to Euro

Hi Dr. X,

I have been diagnosed by my GP Dr. Y to have Peyronies and have scheduled an appointment with you as you were the first available. Since my diagnosis last Friday I have been quite frankly terrified and performing lots of research on the various web-sites reference by Kaiser and others. I believe, I am in the acute phase and want to get moving on this asap. From what I can tell the best treatments available right now are:

Pentox, Cialis, VED usage.

Given this, I would like to know what your thoughts on the above are? Your experience in treating peyronies? And if there is a Kaiser doctor better suited for my case and if so, who?
 

[nemo]

My heart aches when I see or hear things like this. This is exactly why we have to be managers of our own health care. I wish someone would just take Peyronie's out of the hands of Urologists altogether and assign to some other specialty that isn't traditionally surgical in nature. Uro's just don't have the time or interest it seems in Peyronies Disease. Shameful.

Nemo

[james1947]

Nemo

You are expressing the naked truth. Money is in the surgeries, not in treatments with pills, VED, traction.
So why to spend they time?
Also why to spend they time on Peyronies when much more man have problem with prostate, bladder and kidney stones, incontinence and so on.

James