Just Diagnosed

[Robo]

I was told that I have a severe case of Peyronies Disease. 90 degree bend. I am scared to death. I am willing to go anywhere I need to go to see the best Doctor that I can. My Urologist keeps telling me "nobody ever died from Peyronie's Disease". I don't find that particularly comforting. He wants to try a series of injections of Versamil(?) Then talk about options after that. I am 61 years old and I'm not quite ready to hang them up quite yet. The pain that comes from an erection is unbearable. Consequently, I have to detach myself from any of the funner things in life.
I am frantic. Everything that I read seems to have no happy ending.

[Jonbinspain]

A 90 degree bend is bad. How long have you had this problem of curvature of the penis?  

Your Doctor is probably referring to Verapamil. Personally, I've never been down that road, but the guys here who have don't think much of it.

Read all you can here. Nobody has any axe to grind, and we are all suffering with the same problem to some degree. You need to try and calm down a bit, stress will only make it worse.

You can find a list of recommended Uros on here. Briefly, to start with, first line of defence is Pentox. There are other supplements that can help also. Maintaining proper blood flow to the penis is vital. Pentox, along with L- Arginine and Cialis or Viagra, will help you achieve this.

Good luck. If you need to ask anything,feel free. There are guys on here who are far more knowledgeable Bethan me on this subject.

[MattFoley]

Robo,

Welcome to the forums.

You'll find a vast resource of information here. It may seem overwhelming at first but as you sift through it, you'll find a great deal of info that applies to your situation and the possible solutions which may very well impact your Peyronie's disorder in a positive manner.

The first thing I would recommend is to go see a Peyronie's oriented urologist since only a few urologists know anything about this issue.

Second, Pentox is the first-line medication that the vast majority of us here use to fight back against Peyronie's. You need to consider getting on it right away. Adding 5 mg/day of Cialis, Acetyl-L-carnitine (ALCAR), and L-Arginine or Citrulline Malate (my preference) is also a good idea to ensure proper blood flow.

Third, get a full panel blood test done that checks not just your lipids but your testosterone level as well. My emphasis since I started my counter-attack against Peyronie's has been to raise and maintain a high testosterone level. Since you're going into the doctor for a physical soon, that may be the best time to ask for the blood test. Let me know if you want a list of the things that should be checked.

This forum is a great place for info and the other guys here are awesome and will help you as well. Feel free to ask as many questions as you need.

Don't freak out. I started with a 90% bend but now it's closer to 45%.

There's hope.

God bless.  

[BillyBob2]

I can only echo what Matt & Jonbinspain have already posted.  I will add that a very healthy diet, 8 hours sleep every night and proper exercise are huge in your treatment.  There are many sites on the internet which claim they have the best answer and will try to sell you their concoction.  I have spent a few hundred hours researching this.  Don't throw away your time or money on miracle cures... it ain't gonna happen! ... just bear with it for now and allow the healing to take place.  Read everything you can on this site.  I am still new at this but am already on Pentox and am very happy with the pain relief and lessening of the size of the lump (scar tissue).  I am also to receive a VED in the mail tomorrow.  My intent is to encourage the healing process to grow straight rather than to heal in a crooked fashion.  Fortunately the bend I have to deal with is only about 20 or so degrees from straight.  I have been dealing with this almost 2 months and have had a second episode with inflammation and what felt like a very hot little b.b. inside my penis.  The Pentox seems to have alleviated that pain and I feel normal but just have the bend to deal with.  Fortunately, with care I am still able to perform my manly duties....

[Blacksammi]

Hi Robo, sorry to hear of your predicament, but hang in there. There are good news areas with this thing.
I first had problems in June 2012 and by August had a downward bend of 65 degrees, with pain and huge frustration.  After taking advice from others on this site, I insisted my GP prescribe Pentox, which he did after a weeks delay.

Nothing happens overnight but I have gradually improved, with no pain and bend now down to 20 degrees and still slowly improving. My GP can't believe the improvement and has conceded that Pentox must be doing something as he has never seen it improve by itself. He originally was opposed to Pentox use until I asked him to check this site out, which to his credit he did, and then gave me a scrip.

Patience and continuous attention to a regime will pay dividends. I believe that the combination of the Pentox etc plus gentle massage/heat treatment will lead to improvement, even if it never gets back to original condition.  Do as much as possible to improve blood flow.

Keep positive,
Blacksammi

[Robo]

I will travel To San Francisco to see Dr. Tom Lue of UC San Fran Urology. It looks like he may be "the guy". I guess you all know the fright and amazement that comes with this condition. "Why Me?" It's not really happening...It'll be gone tomorrow....It's all a mistake. I still am in a surreal state.  

[MattFoley]

Lue is the man. I'm waiting for my referral to go see him. Good luck.

[Hawk]

Welcome to the forum.  I think MattFoley would agree that in reality many urologists know a good deal about Peyronies Disease but they are indeed relatively few.  A wild guess would be that if you call a urologist at random you probably have abut a 1% chance of getting one that is really knowledgeable so the first order of business is to research your doctor.  If it comes to invasive treatments like Verapamil the list gets smaller and for surgery smaller still.

[CTS]

I agree that finding the right urologist is critical.  I was lucky enough to go to a mens health center with a doctor who specialized in ED is has a lot of experience with Peyronie's Disease.  He immediately put me on 5 mg of Cialis...  He added Pentox later on...  He is not big on all the supplements but I am doing them anyway...  Good luck and keep your spirits up through these dark days...  Both you and your partner should learn as much as you can about the psycholgocal/emotional aspects of this disease...

[MattFoley]

I would agree that many urologists have heard about about Peyronie's but in my experience, few know as much as the members of this forum know regarding appropriate treatment and options.

Peyronie's is a subset specialty within urology that any good urologist who doesn't normally deal with Peyronie's knows enough to refer treatment out to a urologist who actually does handle it.

I agree the best thing to do is research a urologist to find out if he treats Peyronie's, not one that has merely just heard of the disorder.

[Hawk]

MattFoley,

Not to press the issue because I think we pretty much agree.  By literal usage a couple is two and a few can mean "Three".  There is no doubt that there are thousands of urologist in the U.S. alone that understand how to do a proper exam, run and interpret tests, prescribe pentox, and who would support use of VED or traction.  And you can be sure we have not begun to identify all of them so we need help from the members in this regard.

When it comes to something as complex as grafting surgery I think we are then down to no more than a handful of surgeons that would touch my penis.  With Nesbit or implant surgery we are back up to at least dozens.

Hawk

[MattFoley]

Hawk, I think you have a better grip on the numbers in this case than do I. However, from the number of stories I've been reading here in this forum, I'm horrified how many doctors simply say to do nothing or just take Vitamin E when engaging a patient with obvious Peyronie's.

Also, I have yet to meet any urologists that support VED and/or traction. So, again, I defer to your experience and that of the veteran members of this forum.

[MattFoley]

Robo, my opinion is that you should listen to Hawk and get specific info about Dr. Mulhall's credentials to cut into your penis for Peyronie's. Just cause he's a surgeon doesn't mean he can operate on Peyronie's.

Frankly, your first actions should be what has been outlined below. Did you read the part about where I said that I had a 90% bend but now it's closer to 45%? So, yeah, there's hope but you have to take it one step at a time. Also, don't forget that Xiaflex may be an option as well when it's hopefully available later this year.

And, yes, Lue is the man. I hope to see him myself soon.

[Hawk]

Robo,

It is almost non-existant that we delete posts here except in the case of banned spammers, but since you deleted your post I deleted all of mine that made absolutely no sense now that your post was gone.  It is important to the thousands of guests and members that come here for information that the board at least makes some sense when they read it.  That left 2 additional posts of yours that made no sense which I also deleted.

I will delete this post as well in a couple days so please do not reply to it on open forum.

Hawk