Age - 55 years old (in 2005)
Age at onset of Peyronies Disease- 55 years old (2005)
Very First Symptoms- Slight pain from squeezing. Sensitive to squeezing from intercourse as though it was too tight. This was mild pain and I suspected it was just local pain from bimix injections for ED at the time.
My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - This is a long story that I will add to a bit at a time. The saga starts within 3 weeks after retirement when I was diagnosed with very aggressive prostate cancer in 2004.
Timeline1/03/04 Retired at age 54
3 weeks later diagnosed with VERY AGGRESSIVE prostate cancer
4/12/04 Laparoscopic Radical Prostatectomy
7/02/04 First visit w/Dr. Mulhall. He prescribes papaverine/phentolamine (Bimix) injections for ED
2/02/05 Possible initial symptoms of Peyronies Disease (but not suspected by me)
2/18/05 Sudden downward curve of penis-Dr. Mulhall contacted by email-He said continue injections
4/22/05 Appointment with Mulhall, Diagnosis of Peyronies Disease, told to keep injecting and take Colchicine. I had to discontinue Colchcine after 1 month due to a drop in white blood cell count (a possible side effect of Colchcine)
5/01/05 Started enzymes (Fibrozyme and Wobenzyme)
7/01/05 Slacked off on enzymes after 60 days no observable benefit. Started 2500 mg Acetyl L-Carnitine (ALC)
8/1/05 Started 10 minutes of a hotwater soak after shower. Started tazadone 25 mg w/ food for night time erections (worked great from day one). sporadic use of a Vacurect VED (4 times a week)
9/1/05 discontinued ALC after 60 days even though I seemed to feel clear connection with discomfort that was directly associated within a couple days of starting or stopping the ALC. I was concerned about testosterone increase
10/1/05 Have increased VED to about 10 times a week. Continue the heat. Have noticed a clear reduction of my small string of nodules. My curve seems to have slowly disappeared over the last 2 or 3 months. Moderate indentation, loss of girth & length have remained unchanged.
10/1/06 My Peyronies Disease progression has caused my curve to go from downward to up to a right curve but never over 10-15 degrees. This progression has resulted in loss of size. I now take 3000 - 6000 my of arginine, and use the VED about 3 times per week. 3000mg of Arginine and 100mg Viagra make intercourse possible. A constriction band makes a more firm erection. (I am sure that most, but not all of this ED is from radical prostatectomy surgery).
I have since found clinical studies that conclude papaverine is more prone than some other agents to cause plaque. At least one site associates it with plaque IN THE
CAVERNOSAL TISSUE. Dr. Mulhall says there is NO EVIDENCE (not proof, but even any evidence) that injections can cause Peyronies Disease and he tells me to keep injecting two or three times a week to help restore erections and keep the tissue healthy. I thought about it and refused to inject any more. At this point all I have to do is see my dick hour-glassed directly on the underside of the penis from the area where I injected (when I get it erect with GENTLE VED activity). Within the last week (June 1st 2005 four months into Peyronies Disease) I can feel round hard plaque (like peas) in that area.
Once during injection (before I was diagnosed with Peyronies Disease) I must have been in scar tissue with the needle because I could not push the plunger. I thought it was just the plunger until I started to back out and the resistance was gone and the plunger dropped. I told his nurse (by email) and she says NEVER inject if you encounter scar tissue. I am thinking, “WHY THE HELL AM I JUST NOW GETTING THOSE INSTRUCTIONS. Shouldn’t that be part of the injection training?
Even then the fact that there was scar tissue present didn’t seem to be any concern to them and I was too dumb and wrapped up in cancer research to think of Peyronies Disease. I was too dumb to appreciate the possible consequences. Now it sounds beyond stupid, but to me back then, and even to Dr. Mulhall now, it seems like no big deal.
In Feb of 2005 I emailed Dr. Mulhall's nurse that the underside of my penis did not seem to fill out during erections. I thought maybe the bimix was not getting to that area real well. ANY Peyronies Disease Clinic would know that possibly the tunica was not stretching because of Peyronies Disease. They seemed unconcerned, so I was as happy as a pig in crap. Even when I told her in alarm that I suddenly have a downward curve that makes my dick stand up when I am laying on my back no one screamed “OH HELL, YOU HAVE Peyronies Disease!” I had to wait 2 more months for an appointment and was told to keep injecting.
Where I am today, future plans - I have ED but won't inject to reverse the ED because of the Peyronies Disease. I pray for recovery. I consider an implant if nothing else works but I am a long way from that decision right now.[/b]
10/03/05 Update. My curve seems to have totally gone. All my life I had a natural 10 degree upward curve. Peyronies Disease brought me to a sudden 20 degree downward curve. I am now completely straight. I have lost about 2 inches in length but
may have gained 1/2 inch back. I also lost an unknown amount of girth. I still have a moderate indentation on the left side 1/2" from the base. My small string of nodules (at the indentation) have reduced to BB size (they were 3 times that size). My pain has gone from slight to very slight and now only if I am bumped in the wrong way. I plan to use the Vacurect VED 2 times per day. Once will be right after heat application. That is my sole treatment at this point. (Plus trazodone 25 mg at night with food) The trazadone is for healthy arterial blood flow to offset ED.
