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Peyronie's Disease

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Posted 4/23/2012 10:12 PM (GMT 0)
I feel like I am living a good news bad news joke. The good news is that thanks to advice I have received on this forum the Trimix is working. The bad news is that I have developed a bad case of Peyronie's Disease. I am being treated by Dr. Mulhall out of Sloan. He has me going there for 6 sessions of verapamil injections over 12 weeks.

I have read a lot on the web about the disease. According to Dr. Mulhall 10% get better without treatment and with treatment 33% get better. I don't like the odds. I have read a little about Interferon and about stem cells too. Does anyone have an opinion or experience here? Other treatments? Any thoughts or comments would really be appreciated. Thank you very much!
Posted 4/24/2012 3:15 AM (GMT 0)
Forphun -- Sorry about your condition. I don't have any experience with this or any information to relay to you. But Dr. Mulhall is a great choice for your treatment; one of the best in the country. I see him for my ED. Good luck - hope you're in the 33%
Posted 4/24/2012 4:17 AM (GMT 0)
I too have suffered from Peyronnie's disease since my robotic surgery 09/08. It is not really clear why I or anyone else gets Peyronnies. It may be the result of the surgery itself, or from too much trimix intially from MD order, or from a failed attempt at using the VED. Anyway, I do notice I have an old scar running from the base of junior all the way to the top which I guess is evidence of scar tissue from some event. My Peyronnie's is mild, to the left. The only way I tried treating it was with one of those stretching braces you wear during the day. They don't really hurt but do ache after a few hours. It was a pain to put on and wear so I gave up using it after about 6 months. But I think it did help some though. My wife doesn't  seem to complain about the curve. She has numerous medical problems and isn't too interested in sex anymore any way.  I have low T and am waiting another 1-2 years before going on T replacement therapy to make sure the cancer doesn't come back so we don't have a lot of sex anymore. My only advice to you is if you keep injecting make sure it is on the side opposite of the curve since junior curves in the direction of scarring  and keep the dose down as much as possible. I only inject on the R side now since the curvature is to the left, and I try to avoid 4 hour erections with sudafed, good luck to you........
Posted 4/24/2012 5:29 AM (GMT 0)
Dr. Mulhall says that there is no evidence to show that Trimix injections cause any scarring.   So check with him about only injecting on the side opposite of the curve.
Posted 4/24/2012 12:27 PM (GMT 0)
Thanks guys for the suggestions. MSPT98 I have low T also.  I have had it for years.  Even thought I am only 7 months post op I have started T injections.  Of course I am being watched very closely.  I know this is very controversal.  In my case not sure what to do because the cure is pretty much straight up and just 10 degrees to the left.  Junior is bent at about 49 degrees which prevents penetration.   
Posted 4/26/2012 4:21 AM (GMT 0)
forphun,

    Can I ask you since your Peyronnie's prevents intercourse, why are you taking the testosterone? Is it to treat depression, osteoporosis, mind fog, prevent heart disease, or make you more interested in other types of sex? My psa level came back at .00 again and I still have worry or recurrence of prostate ca nearly 4 years later. What makes YOU want to take T?

Posted 4/26/2012 4:53 PM (GMT 0)
MSPT98, you asked a good question.  One of the effects of low T is osteoporisis.  I actually have a fairly bad case of it.  Very long story short my low T is caused by a damaged pituitary gland.  I will also tell you that low T has lots of other symptoms too, besides the obvious. 
Posted 4/26/2012 7:38 PM (GMT 0)
forphun, your situation is similar to mine, at least for the first couple of years of my journey. I have had low T since before initial diagnosis, have been able to treat when there is no evidence that the PCa has returned. I used VED, injections (mainly bimix, but tried trimix). Developed peyronies, close but not quite as bad as yours. Although mine did not prevent intercourse, it was bad enough to be so distracting to prevent orgasm. I was only ever treated with Colchicine, which has had dubious results for peyronies at best, and did not help me at all.

What I have ultimately decided to do to address both increasing ED (from initial surgery and from SRT) and the peyronies is to get an implant. I am still on the mend (4 weeks out from surgery), but am able to inflate the device. The only evidence of the peyronies is a slight tilting of the glans when fully erect. The erection is as good as before I had any ED problems, pre-prostatectomy; it is straight as a board. I am very happy with my decision. I would be very surprised if your peyronies treatment works to your satisfaction. I would highly recommend the implant as an option for you.

One issue that I had, and in researching this, it seems to be a common issue: over 4 years, I lost at least 20% of my pre-prostatectomy length, prior to the implant surgery. The implant cannot make up for this loss. My understanding is that when you are no longer getting daily, frequent erections (night erections are included in this), you gradually lose length (similar to atrophy). This is an argument to not wait forever to have the surgery.

I am told that the model that I got (the 700 LGX) can result in a modest growth in length over time (doc said 1 cm, some have said they gained 1 inch). Also, my insurance (HMO) covered the surgery for my situation, which is similar to yours.

Food for thought. You don't have to be finished with a rewarding sex life.
All my best
Jeff
Posted 4/27/2012 7:34 PM (GMT 0)
forphun, can you post the results of your peyronie's verapamil treatment when finished? I am sure that there are many here that will be curious as to the outcome.
Thanks, Jeff
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