New here - diagnosed today with Peyronies

[brettcase]

I'm 56 and have been married 28 years. Last month I noticed an indentation that is about 1/2 inch long and about 1/4 inch deep -- like an hourglass but just on my left side. Fortunately it does not hurt and does not cause my penis to curve.

I went to a urologist and was prescribed Verapamil. I've read that it could take up to a year to work, if it even works at all.

As for how this is affecting me psychologically: I can live with it as it is now. But naturally, there is the ever present fear that it may get worse.

[LWillisjr]

Welcome to 'the club'. You will find many compassionate brothers here. We encourage to read the following post if you have not done so yet.

MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

[james1947]

brettcase

Verapamil cream will not help according to the forum experience.
You want to be on Pentox, low dose Cialis, Ubiquinol and VED as soon as you can.
Click the link LWillisjr has gived to you, it will help you to understand the basics of this disease

James

[Knight]

Welcome and sorry all at once to you brettcase! Listen to LWillisjr and james1947 as they are experienced veterans of this brutal condition. As for verapamil cream, don't waste your time or money. I was on it for quite a few months and it did nothing. The people who put the compounds together and sell it will tell you you need to double the dose and/or massage it in more thoroughly when you express your concerns about it's ineffectiveness.

I threw my prescription in the garbage.

The VED seems to help many, you may want to give that a careful try.

Don't give up hope though! I figure if they can put a man on the moon, perform open heart and even brain surgery someone is going to figure out a way out of this box too!

Good luck!

[brettcase]

Thanks guys.

Today I emailed my urologist and requested a Pentox prescription.  Its unusual that 3 of the 4 urologists at the practice where my insurance requires me to go are female, which I understand is rare for urologists. I was assigned to a female Physician's assistant, not an MD. All the MD's were booked for 3 months and I wanted to be seen sooner.

If she says no to the Pentox then I will have to get a second opinion. It's very important for me to try to stop the progression of Peyronies ASAP.

[emasculated]

Weaponize yourself with Pentox studies for the next appointment.

[Knight]

brettcase - FYI - I had to go through 3 different urologists before I found one who was familiar with, and willing to prescribe Pentox. Be aware that Pentox, Pentoxfylline and Trental are all different names for the same drug. Be prepared to be patient and persistent due to the fact that most urologists are very ignorant when it comes to Peyronies. Don't stop searching until you find a doctor you feel is understanding and competent about our condition.

There is a list of some good and not so good doctors on this forum based on other members experiences.

Good luck and keep us posted. Don't be afraid to ask questions. There are some very good guys here who have been through it all and many have found different ways to live with, and even prosper, despite our affliction!

[brettcase]

Yes, I'll keep trying to find the right urologist. I'm in the Sacramento, California area if anyone has a urologist to recommend.

What I have right now is nothing compared to what many here are going through.  I consider the indentation I now have as nature's way of warning me to avoid stress to that part of my body in the future.

[james1947]

Some of the leading Peyronies specialists are in California.
You will find in the link bellow one that is close to you:
https://www.peyroniesforum.net/index.php/board,37.0.html

James

[anonpdacct]

brettcase,

I see Dr. Tom Lue in San Francisco.  He's considered a top peyronies specialist and he's at UCSF.  I also see Dr. Gelbard in Burbank - another peyronies specialist.

SF is an easy trip for you so I would recommend Dr. Lue in a heartbeat.

best,

Anon

[brettcase]

Update 3/8/14: Last week my urologist (a physician's assistant)  said no to Pentox. So I cancelled my followup appointment with her and got a new appointment on 3/31 for a second opinion from another urologist (a real doctor this time).

I also left a message requesting Cialis, but haven't gotten an answer yet. I think Cialis will reduce the risk of further damage.

Meanwhile, my 'Verapamil2' arrived in the mail from Peyronies Disease Labs. I guess they added a '2' on the end to indicate an improved formulation? In the 'Patients Guide' they say that the standard treatment is between 9-12 months. Since it is costing me only $15 a month for the insurance copay plus shipping, I figure its worth a try and won't hurt.

Also, I have been under tremendous stress lately. My mom (89) was diagnosed with Alzheimer's in December, and my dad (87) is unable to care for her. So when I discovered Peyronies in January I was quite upset that it happened during this very difficult time while I've been trying to get help for my parents.

Anyway, I look forward to the appointment with the new urologist on March 31 and hope to get additional meds.

[james1947]

brettcase

Proposing you to spend some time reading:
Verapamil - Injections & Topical Applications including Iontophoresis - PDS - Peyronies Society Forums

James

[TJ]

I sure wish that my insurance co. would cover Verapamil. It cost me $100. per script.

[brettcase]

James - I realize that Topical Verapamil is not likely to work, but its the only treatment option I was given. I'm still trying to get a doctor to give me additional meds to try.

TJ - I have good medical insurance because my wife is a Registered Nurse at a hospital. The coverage is excellent for prescriptions, but my choice of doctors is extremely limited.  ..... By the way, I see that the above was your first post here. Why not start a topic here and introduce yourself?

[james1947]

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

James