New Member; Need Information; Please Help!!!

[RMBeckwith]

Hi,
Last month my husband noticed that his penis was crooked when erect and it started to hurt.  We went the urologist last wee and he was diagnosed with Peyronies disease.  We were told that there is no treatment, he gave us a sample of an ED drug and said we needed to go home and take vitamin E and we can come back in 6 months for a check up...Okay...well now my husband hurts so much we can't have sex.

I've been doing research on the web all day about Peyronies but I'm more confused than when I started.

I've been reading posts on here and I just don't know where to start.  My husband and I are very close; we've been married for 27 years, since we were teenagers, so we can talk openly about this.

I've read that there is an "active stage" of this disease...what does that mean?  I've read that this can last for years and even get worse....I'm terrified!!! We're only 46 and suddenly we have no sex life.

I've read that things like vitamin E, Carnitine, arginine. coq10 and some other things like cialis help.  I've also been reading that penis traction devises and massage might work.

Any information would be HIGHLY appreciated.  What should we be doing right now?  What should my husband be taking?  Should we splurge on one of those penis traction or penis enlargement devices?

My husband is trying to be strong, he doesn't complain but I know he's worried (just by the fact that he agreed to go to the urologist) and, like I said, I'm terrified.  I don't know where to start.  Please help!!!

[LWillisjr]

It would be good for your husband to read this. You can print it out for him.
MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

unfortunately you got the standard urologist response. This happens to the large majority of people who come to this forum. I don't know where you live but you need to get to someone who specializes. I know you think why would a doctor tell you do so something that doesn't work. But many urologists are taught in college how to diagnose Peyronies, but not all of them specialize I this. Our collective experience is that while Vitamin D levels are important, it does little for Peyronies. It is common to have pain during the acute phase, and a drug called Pentox seems to help with this. The acute  phase can last from 12-18 months. He might not have pain during this whole time.

We strongly encourage VED or traction therapy especially during the acute phase to help keep the disease from getting worse. His pain should eventually stop, you want to keep any curvature from forming or getting worse.

We are happy to offer advice or answer questions.

[RMBeckwith]

Thank you Les for your reply!!!  Is Pentox a prescription medication?  I just don't know where to start.  I'm not sure how to find a dr that specializes in Peyronies. This is a scary thing.  

[james1947]

RMBeckwith

Yes, Pentox is a prescription medication.
I was starting with Pentox, low dose Cialis, Ubiquinol and VED.
You may find a specialist close to you at:
https://www.peyroniesforum.net/index.php/board,37.0.html

James

[LWillisjr]

My doctor is Dr. Levine at Rush University in Chicago. Highly, highly, highly recommended. If you are anywhere close it is worth the trip. He would prescribe Pentox and also have you take L'Arginine which you can buy over the counter. If he is having trouble with achieving erections then would also add in low does of Cialis to improve bloodflow. On this forum you will see this referred to as the PAV cocktail.

Do you know what your husbands curvature in degrees. (0 degrees would be no curve, and 90 degrees would be a complete right angle.

[RMBeckwith]

Thank you guys for your help!  We live in Louisville, KY. But we might have to make a trip up to Chicago to see your dr.  My husband is very reluctant to tray anything unless it comes straight from the dr.  I'm trying to sell him on the idea of the traction devices and he doesn't even want to try...  

[Norm]

RM,
This is a lot to take in. Before this came up, you had never even heard of Peyronies Disease. It is a lot more common than you think. The key is to start immediately on treatment. Pentox, as mentioned earlier, is not marketed for Peyronies Disease. That is why most docs don't know about its efficacy for this ailment. It helps with blood flow, very important for Peyronies Disease victims. Also, I suggest a VED. I know it seems unnatural for your man to use a mechanical device to create an erection. But that erection is nothing like a sensual erection. The vacuum pulls his penis to a rigid state. Releasing it allows him to go back to flaccid immediately. The repetitive erection/flaccid pattern helps blood to flow in and out many times. This is what he needs. If there is curvature, it helps remodel his penis back straight. If all this fails, and it takes a long time, there are surgeries. Surgery is a last resort, but that does not mean it is a bad resort. There is help. If the non invasive methods do not work, there are minimally invasive methods that do work. Your sex life is not over. It may be hindered for a while, but this can be conquered. Help him and encourage him all you can. Read as much as you can here. This forum has the experience of almost 7,000 members. Hang in there. You have come to the right place for help.  

[RMBeckwith]

Thanks Norm!!
If we can't make it all the way up to Chicago, I've got a list of things to ask the urologist that we saw last week about.  Pentox, Cialis and a VED are on the list.  I'm afraid he's not very knowledgeable about Peyronies though.  

What kind of suppliants should he be taking?  He' taking vitamin E twice a day now.  I've seen on this list people talking about Carnitine and Arginine.  Do these help?

[Norm]

RM,
The gold standard here is Pentox, Arginine, Carnitine and ubiquinol( or CoQ10 if he is younger than 40). And, of course, the VED and Cialis.
Norm

[RMBeckwith]

Norm,
what's the difference between Q Co10 and ubiquinol?  He's 46 but I just bought him a couple bottles of ubiquinol last night.  I just thought ubiquinol was a better version of  Co10?  Now I'm confused....LOL

[Norm]

As I understand it, CoQ10 has to convert to ubiquinol in your system. After a certain age( about 40) your body is no longer very efficient at making that conversion. It is better to just take the ubiquinol in the first place, as there is no need for the conversion.
Norm

[RMBeckwith]

Okay, thanks Norm!  I'm glad that I got him the ubiquinol then.  Boy is that stuff expensive.....$31.00 for 15 pills....  

[james1947]

Much cheaper here:
Ubiquinol - Best Prices on Ubiquinol Supplements - Swanson Health Products|dc&pcrid=44347250047&gclid=CLn_0MX6_LwCFUtU4godWT4A3A
and here, including explanation:
CoQ10 & Ubiquinol | CoQ10 Benefits - Mercola.com

James

[IhatePD]

James,

Thanks for the link.  These prices are much cheaper than I have been paying for the convenience of going to the local Vitamin Shoppe.

I am going to place my next order with them.

[james1947]

My sister bought from both in the past and sent me by US parcel post. Paid no import tax.
Here where I am living now, the price is 5 times higher.

James

[james1947]

This topic is locked.
Please continue with specific subjects on the adequate boards

James