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Yoval

Hello all.  I am 36 years old, married, and my Peyronies started this October (2017).  Unfortunately, before my onset of symptoms, I developed a neuropathic bladder and urinary retention and have to self-Catheter to urinate 4-6 times a day.

I am sure this caused my Peyronies because the catheters cause repeated microtrauma to my penis everyday. It hurts everytime.

My plaque developed from the middle of my penis around what I think people call the septum.  It felt like a tiny cyst.  I saw the urologist immediately and he started me on vitamin E.  AT that time I had a small dorsal bend right below my glands.  After that the plaque rapidly expanded and grew firmer and covers a sizeable portion of the dorsal midline of my penis.  It is very hard for me to achieve erections, due to spinal cord injury, but when I do, the curve now hooks 45 degrees to the left and has the dorsal bend, if I try to straighten it out while erect, there is a corkscrew like appearance.

The changes have been rapid and the density and size of the plaque continues to change (again, I can't stop cathing, so I have 4-6 microtraumas to my penis a day).

When I last saw my urologist he went right into discussions about xiaflex and penile implants with me.

We are going to try the xiaflex first.  He isn't pushing anything on me, but he said there aren't really any good treatment options for Peyronies and that the xiaflex results don't result in high patient satisfaction.  On the other hand, he said the 3 piece penile implant always straightens the penis.

I think I may go the implant route because I already have significant ED and I think I won't have any penile shortening if I do the implant early while I still have my elasticity.

I have not tried Viagra, but I will. I think pain significantly contributes to my ED because my erections hurt.

Anyway, I would love to get your thoughts.  I thought about trying traction but my Peyronies is rapidly evolving over a short period of time.

Thanks

betterbend

Hello Yoval,

Surprised that you uro put you on Vitamin e, and then talked about Xiaflex.  Vitamin e is considered ineffective for Peyronies, if he was experienced in Peyronies he would know that.  I would not let him treat with Xiaflex.  Xiaflex results are very much influenced by the experience of the doctor.  If he has not done a whole bunch of patients, with successful results, find somebody who does.  Additionally, you sound like you are in a very active stage of Peyronies and Xiaflex isnt indicated until you have stable symptoms for at least 6 months.  I doubt you would get an insurance coverage in your stage because of that.  I also think implants are done after you have stable disease

Verapamil injections might be an option, they are used during the active phase to lessen the pain and to keep the bend from getting worse.  I couldnt say if traction would also be helpful in your state or maybe VED might be acceptable, that i dont know.  Get started on coq10 300-400 mg per day.  It has shown some promise...

I would say to find a Peyronies specialist, a lot of uro's have the mindset of your doctor, but guys who are Peyronies specialists feel that there are ways to limit the progression and to correct some of the physical issues such as pain, bending, and ED.  They say that outcomes are better when they get patients early in the disease...

Hope this helps ...Good luck...
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Yoval

Thanks guys.  The guy told me before starting me on Vitamin E when I first showed symptoms that Vitamin E probably won't work but that was right when I noticed things in October.

He told me that no oral medications work for the disease because there is a very rigid plaque that is made up of collagen fibers and scar tissue.  Maybe he is wrong, I don't know.  He said the only treatment options are surgery to put sutures in the opposite side of the bend, surgery to cut the plaque out and patch the area with a graft or a penile implant.

My plaque is developing very quickly because I have to cath everyday, that's what worried him.  I may not every reach a stabilization of my plaque.

What is Pentox and coq10 300-400.

betterbend

Pentoxifylline is a prescription medication originally for improving blood flow in patients that have vascular issues such as diabetes.  It helps blood to flow more easily into the damaged or narrowed capillaries.  It also is supposed to help reduce scarring and possibly calcification.  There have not benn well designed study to show effectiveness, although many report it helps.  Properly studying a drug costs a lot of money.  If its difficult to make a profit then studies often dont happen, so just because it doesnt have a study to support it doesnt mean it isnt effective.

Coq10 is a substance that occurs naturally in the body.  It is a potent antioxidant that is supposed to help with the inflammation and damage that leads to the scarring.  Again not a lot of studies out there supporting this yet.  However coQ10 can be bought in a vitamin shop or pharmacy without a Rx.  It has other good effects on the heart as a side bonus and helps in muscle recovery in athletes
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Yoval

Thanks betterbend.  Have you experienced results with these medications?

betterbend

I am using coq10 400mg daily.  The brand I use also has 30 units of vitamin e in it, but that wasn't important to me.  I am going under the theory that coq10 at least it can't hurt, and is generally good for you.  I am only about 10 month in with Peyronies.  I seem to be stable, so I could not tell you if it's helped, or maybe prevented worsening.  I am also in the middle of Xiaflex treatment, had my third injection last week and fourth coming next week.  I think there has been improvement in my curve, but couldn't say how much.   I get a re-evaluation at the end of April, that will be more definitive.  I am detailing my treatment in the Xiaflex results section.  

I still have function, occasionally use sildenafil, but not always needed.  I can penetrate without any pain for my wife, although I am avoiding doggie style right now.  Other guys are using Pentox and could  tell you how that is going...
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex