Just diagnosed with Peyronies Disease, I am scared...

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Madigan

2 months ago when I was urinating I noticed a lump on the shaft of my penis at mid point, my mind immediately thought this was going to be something really bad....maybe even cancer. I lost sleep for the first week, scared of what I should do. I was too embarrassed to make an appointment with my doctor as I have always been shy about having my genitals examined during physicals. I ended up sharing what I had found with a good friend whom really pushed me to go see a doctor immediately. A few days later I came down with the flu (105 degree fever) and ended up at the urgent care center. While I was there I got up the courage to tell the doctor about the lump I had found on my penis, he took a look at it and then sent me to have an Ultrasound right then. After the Ultrasound the doctor referred me to a Urologist and urged me to set up an appointment right away. The appointment was set for 3 weeks out, that freaked me out even further as time was passing and I was afraid that whatever it was would get worse. Well, it did get worse, the lump began to widen and flatten out, even seemed to start wrapping around the right side of the shaft of my penis. Every day my anxiety grew (I already take medication for anxiety and depression). On December 6, 2010 I finally met with the Urologist. He examined my penis for a whole 30 seconds and told me I had Peyronies Disease. I had so many questions, but he did not seem concerned and just told me to watch what happens and check back with him in 6 months. My questions to him were vaguely answered and he briefly told me about what could be done to fix my penis should it get worse....surgery. I left his office feeling even more confused and anxious. Since my appointment I have noticed the lump still growing but it had no affect on my erections. Last night I felt like masturbating and when my penis became erect I was in complete shock, my penis was bending severely towards my stomach and scared me to death. The moment I saw my erect bent penis I went completely limp out of fright. This curve had not happened prior to last night, this is a nightmare to me and I am so incredibly scared. I feel like my manhood is being taken from me, how will I be able to cope with this, how will a potential intimate partner see me? I immediately went on-line and did a complete search on the disease. Some of the images and information I came across horrified me. I then came across this site and spent hours reading all I could about the disease and how to contend with it. I stayed home from work today so that I could read everything I could possibly find to help me, the more I read though, the more emotional I become, today I am severely depressed. I am so afraid of getting another erection and seeing it again........I have always found it hard to reach out for help, but I desperately need it now.  
Madigan

Skjaldborg

Madigan,

Sorry to hear you were diagnosed with this disease. It's a kick in the gut but I promise you that the situation will get better. You now have an opportunity to treat the disease early and to make yourself healthier overall in the process.

Go to another urologist ASAP and get on a drug called Pentoxyfylline (Trental). Print out these studies on Pentoxyfylline located here on the forum: https://www.peyroniesforum.net/index.php/topic,772.0.html and show them to the urologist. This drug works. It is not a cure but it has been proven to shrink Peyronie's plaques/ scar tissue.

Next, get a referral to a male sexual health specialist urologist. If you are near California, see Dr. Tom Lue. I went to him and he was great. If you are in the Midwest, see Dr. Lawrence Levine in Chicago. I believe there is another, Dr, Milam at Vanderbilt, in Tennessee. These doctors have up-to-date knowledge on the disease and are the best in the U.S. regarding Peyronie's.

I was diagnosed at age 29 after a minor injury during sex, I am now 31. I first felt anger and depression, much like you did but I took those emotions as impetus to do everything I could to fight the disease and make myself healthier and stronger. I am not cured, but I am in better shape physically and mentally much tougher than before I had this disease. I also have a beautiful daughter conceived while I had this disease. Life is not over.

Feel free to PM myself or other members of the site for questions.

Skjaldborg


chefcasey

Madigan-

I'm sorry to hear that you've joined our ranks as well.  This is a difficult thing to cope with, especially within the first couple months.  I was diagnosed myself about 3 months ago and I've been on a emotional roller coaster like never before.  Once you learn to accept that you have Peyronies Disease, but that there is treatment, and that it will take time and determination to see improvement, then trust me you will feel a lot better.  

I agree with skjaldborg, go see another urologist immediatly.  Try to look for a urologist who specializes in Peyronies Disease.  If any uro tells you to wait 6 months, or there's nothing they can do, then that is a clear indication to find someone else.  I went through 3 uros in my area, all clueless about Peyronies Disease, so I finally have an appointment with Dr. Levine in Chicago.  I'm 27, and like you I was hopeless, almost suicidal.  Thanks to the guys on this forum, I have discovered that that there are many treatments.  I also feel much better knowing I am not alone.  Peyronies Disease afflicts thousands, perhaps millions of men in this country.  

Hang in there and never give up hope.  This disease DOES get better with treatment

Madigan

Skjaldborg,

I am overwhelmed at the outpouring of support I have been given on this site!! Thank you for taking the time to respond to my cry for help, I feel like I am in good company now. I want to also thank you for sharing your story with me about your challenges with the disease, and congratulations on having a beautiful daughter through it all...:)  

I am going to see another Urologist as soon as possible, hopefully the one you suggested. I am also going to print out the studies you provided me the link for on Pentox.

My day is a little brighter!!
Madigan

Madigan

chefcasey26,

Thank you so much for responding to my cry for help. You and I are both new to this disease. Yes, the emotional roller coaster is overwhelming and the thoughts that run through my head are endless. Hearing from people like yourself really helps me feel understood and accepted, I am so happy that you took the time to share your story with me. Let's stay focused on staying alive and not being suicidal, I went through that feeling over the past year and a half when I lost most everything in the recession. I now have help on that front, and it seems that now in dealing with this disease I am in a good place here on this website with people like yourself.

I am going to follow your advise and find a doctor that specializes in this disease and not accept one that just brushes me off to have me check in again with them in 6 months. That is 6 months of lost time in which I could be proactive.

Please continue to share with me your efforts and accomplishments in beating this disease, since we are both in what I hear is called the acute stage, it would be helpful to both of us to compare notes.

With much respect and positive thoughts towards our recovery!!
Madigan

dioporcolorisolvo

I have peyronie since 6 months....the disease hasn't arrested. I have made various treatments, no benefits. Unfortunaly i can't assume Pentox because collateral effects. The my last attempt is Ubiquinol + VED. After them i can't do more.
I'm losing girth day by day....
I have only 27 years, i can't do any sport since 2 year because i have phisical problems on the legs.
Sex and sport are the only things that gave me sense in the life.
I'm also a bipolar depressed since 8 years. Sex and sports were my weapons against depression.
Now i have nothing to live, and i'm renouncing to continue coping the disease and coping the life.

newguy

dioporcolorisolvo - I'm sorry to hear that your condition is still active. Please do stick with the VED and Coq10. You could throw Cialis into the mix too. It might do some good. Hang in there.

Madigan - Any update on your condition?