New Member from SF Bay Area - Have had Peyronie's for about a year now

[dreamcatcher]

Hello everyone,

I am glad there is a forum for us Peyronie's folks. Thanks to the moderators for hosting it!

I am a 58 y.o. gay man living in the SF Bay Area. I started developing Peyronie's disease about a year ago. My penis is now about 90 degrees and points up. It is painful to get erections, but not as much as it was a few months ago.

I consulted with a doctor when I first discovered the curvature starting. He sent me to a urologist, who verified that I have Peyronie's. He said to just wait and see what happens. He felt offered some prescriptions meds, which I took for a month, and had no results - things just kept getting worse. He said they probably wouldn't work. I stopped taking them. He said that there were no really effective nonsurgical treatments. Since that time, injections have become all the rage, but my doctors feel they are not advisable in my situation, since I am already 90 degrees. They feel surgery is the best option now.

I have gone to several urologists, and gotten second and 3rd opinions. I highly recommend this to everyone. You want to find a urologist that you feel comfortable with and that you feel understands this disease and is competent. After my interviews, I could easily tell who was comfortable and competent and who was not. There were two urologists that I would not want to work with on Peyronie's. They were nice people, but not well versed in Peyronie's. But they knew who was, and send me to them. You want a doctor that specializes in Peyronies and other penis surgeries and understands the complications and concerns.

I learned that there are three major types of surgery being performed now. You can easily research this on the web. There are good sites (and bad ones) and videos of the surgeries you can watch. Not for the faint of heart!

I am in a waiting period now - waiting for the Peyronie's to stabilize. I have found a doctor who I really like at Kaiser in Oakland. She has a good reputation, and specialized training. I will wait another month see if things are stable and see if I want to go through with the surgery.

Surgery is not mandatory. I could just live this a 90 degree penis. I haven't had sex with another man in a year, so I didn't know if men would even have sex with me. I put an ad on Craigslist to find out, and a few guys responded and said they would be interested in trying. I don't know what the sex would be like, so I haven't met anyone yet. I don't want to be a freak show. Because of the bend, it might be great for oral sex, since the same would be much easier to swallow than a straight penis. Also, in anal sex, the curve would be a great prostate massager. But I don't know if it would hurt me or not. So I haven't met anyone or tried either.

During the last year, I broke up with my boyfriend because of this (not because of him, because of me. I didn't want him to see my deformity at the time. I also moved to another city). I have withdrawn quite a bit and have become pretty depressed. Because of this, I went for counselling (finally) and also enrolled in a Kaiser class called "Managing Depression", which after one class, seems very good. I recommend anyone with Peyronie's get counselling and do something because it sounds like most of us suffer from depression.

As mentioned above, I have Kaiser insurance. This will cover surgery etc. under my plan. They have been amazing so far, even though some of the doctors weren't very familiar with Peyronie's, they helped me find doctors in the Kaiser system that were. I know there are some doctors who do lots and lots of Peyronie's surgeries, and I am going to check them out as well. Experience in this area probably makes a big difference in outcomes.

I hope to learn from the other men on this forum.

If you haven't any questions or want to chat, feel free.

[james1947]

dreamcatcher

I am not surprised you meat incompetent urologists as many of us had this problem also.
I am also not surprised that many/all are offering you surgery.
On this forum, surgery is regarded as last resort, not first option.
Before going under the knife, I am proposing you to read:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
and also other topics regarding treatments.
Read the Xiaflex board also.

James

[welshwales]

Hi and welcome to the site. What medications were you given? Only one month of a specific medication regime is a very small time period. It's worth trying meds like pentox and daily low-dose Cialis for at least three months, and preferably including moderate and responsible VED therapy. Check out the VED board for more info on the subject.

[RoyHobbs]

Dreamcatcher-

One of the best urologists in the world is right in your backyard. Go see Dr. Tom Lue at UCSF. Bring a picture so he knows what he's dealing with.