Skjaldborg - Updated 10-28-2009

[Skjaldborg]

Glad I found this place, here goes:

Age -30

Age at onset of Peyronies Disease Age 29

Very first symptoms- In early 2009 I noticed a tingling sensation on the top middle part of my penis after sex with my wife. There was NO popping or pain or loss of erection and nothing seemed out of the ordinary. The tingling sensation went away after a few hours. Approx 1 month later, I noticed an hourglassing shape in the middle of my shaft and some discomfort during erection.  I did some internet research, found this forum as well as other sites and was pretty sure I had Peyronie's disease. The next time I tried to have sex, I had a diminished ability to maintain erection (probably because I was worried about further injury). Shortly thereafter, I made an appointment with the urologist.

My Peyronies Disease progression - Treatments (in order), Doctors, Psychological Stages, observable changes  Still have hourglass shape (it's been 6 weeks since onset of symptoms) and still uncomfortable when fully erect. No palpable scar tissue (yet) and the curvature is minor. (I have a congenital downward curve and now it's a little straighter and a bit shorter than before). The urologist gave me a full examination and explained the condition in detail. He said to take it easy for 3 months, try to forget about it and take Motrin everyday to reduce inflammation. He was very supportive and said that at this stage (acute) we will have to wait and see what happens.

Psychologically this has been very difficult. My sex drive is way down and I'm worried that every time I get an erection that I'm making it worse. I am lucky that my wife is very supportive and we have discussed the situation openly. I feel angry because I am young, take care of myself and generally make good choices that benefit my health. I keep thinking "why me?" And I'm sure I'm not alone in that mode of thinking. I'm not a religious man, but honestly, if this condition isn't grounds for apostasy, I don't know what is. I'm really glad this site is here and reading other people's stories has been a big help.  I know that penis problems aren't easy to talk about under any circumstance so thanks to everyone for sharing.

Where I am today, future plans Trying to hang in there. I've been focusing on my running and exercise. The anger has helped push me through on some long runs. I'm trying to take care of myself and wait and see like the doctor said. Honestly I would just be happy to be able to have pain-free sex and have kids. I want to be able to enjoy thinking about sex and not be burdened with the unhappiness that this condition brings with it. The doctor thinks that due to this not being severe that I might come out of this OK. I'm a worrier by nature so I can't rest until this three month acute period is over.

UPDATE Had 3-month follow up appointment 6/26 with local uro. The doctor could feel much more fibrotic tissue, which I somewhat expected because I am still experiencing pain during erections. It was very painful when he checked for these. He put me on Trental (Pentox) which I will start in a few days. I'm not sure how to feel. The changes have hit me hard psychologically. I did not expect to be dealing with this at 30, but things like this happen. Will keep chin up and post progress when I can.

UPDATE 10-28-2009 I had an appointment with Dr. Lue and his assistant Dr. Shindel at UCSF last week. I received excellent care and support as well as some of the first good news I've heard in a long time.

Firstly, Doctors Lue and Shindel did a great job including my wife in the process. They invited and encouraged my wife to stay in the room during all examinations and the ultra sound. They asked open and frank questions about our sex life and how the disease affects both of us. The doctors, my wife and I are a team in this fight.

Secondly, the palpation/examination was not painful. At my previous Uro appointments at 2 months and 5 months since contracting Peyronie's, the examinations by the doctor were very painful, now they are not (at month eight).

Thirdly, the Pentoxifylline is working. I have been using it for 4 months. The ultra sound showed NO CALCIFICATION and a thin layer of diffuse plaque. I have thin, diffuse scar tissue on the dorsal portion of the penis behind the glans, which causes hour glassing and minor curvature. The pentox is stopping the pain and has softened the scar tissue. The doctors remarked that the scar tissue was soft, flexible and not as extensive as I had feared. I will stay on Pentox for at least 6 more months.

Finally, since I have very good erectile functioning (with no drugs), the doctors said I won't need surgery and that due to my young age and health and pentox, I may see some reduction in deformity and the pain is almost sure to go away. I have been dealing with this disease for 8 months and this was the first decent news I have heard. I recommend everyone go to a male sexual health specialist to get the best care you can. I still have Peyronie's, some deformity and some pain, but life just got a little bit brighter. Keep fighting everyone and best of luck!

-Skjaldborg