Hi everyone, I'm so glad I found this forum.
I've been having painful erections for the past 3 weeks and saw a urologist yesterday in Los Angeles. He performed a visual inspection and confirmed that I currently have mild Peyronie's and that it's the hourglass deformity. I'm trying to remain calm and optimistic, but adding to the stress that comes along with this diagnosis, I'm also married and my wife and I just started trying to conceive less than a month ago.
My doctor started me on Pentox, 20mg of Viagra daily, and also recommended L-Citrilline. I can achieve erection but it's somewhat painful, and now I've also noticed flaccid pain, and a burning urethra sensation after ejaculating. My urologist gave me a referral to Dr. Gelbard, and the earliest I could get an appointment with him is for a month from now.
I have some questions and I would be so grateful for any advice/insight you could offer, especially while I'm in this period of waiting to see the specialist:
-I saw Dr. Gelbard listed on the specialist page here and one of the reviews looked terrifyingly negative (referring to a failed Nesbit procedure). Would I be better off seeking out another specialist?
-I've read a lot about A L Carnitine, and I'm wondering if I should use that instead of the L-Citrilline my doc recommended?
-I'm lacking knowledge about the Hourglass deformity. Is Vacuum or Traction better for that shape? Would you recommend I start with that before my visit to Dr. Gelbard in a month? Any particular device recommendations? I feel overwhelmed with the available information.
-I've read the acute phase goes up to 18 months -- do most people experience pain for most of that time, or do more people see that go away after a few months? Since I can still achieve erection, the pain is currently the worst part of this, other than the mental effects and not knowing what to expect. If the Pentox is helping me, how quickly would I notice any pain relief, symptom improvements?
-The urologist I saw yesterday said Xiaflex is not an option for hourglass deformities, is that widely accepted as true?
-Based on what I've described so far, can you give me some reasons to be hopeful? So far I'm focusing on the idea that I have caught this fairly early and feel lucky to live in LA where there seem to be good specialist options.
Thanks again for any insight or advice you may have, and best of luck to each of you. I hope I can be a supportive voice for all of you as well.
-Leo
Welcome to the club, Leo.
I too have hour glassing/narrowing. Been to Gelbard 3 or 4 times and he is a true gentleman. Most caring of
any of the doctors Ive been to around LA. You are doing all you can do now. Pentax, L-citrulline, CoQ10.
Unfortunately not much can be done with our issue to include Xiaflex. Many have had success with VED. This may counter
the hour glass effect. Hopefully some of the other guys can help you with your other questions.
Patman -- thanks for the reply and for the reassurance about Dr. Gelbard, that is really comforting to hear.
I'm looking into the VED threads now. I'm not sure whether to start with an OTC device now, or wait until I see Dr. Gelbard in a month to get his recommendation. Logic says starting earlier would be better, but acquiring a device and using it properly seems really overwhelming at this point.
Thanks again!
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Imn25
There's no problem taking both ALC and Citrulline Malate. They perform different functions and both can be helpful in their own way. I'd recommend you buy in powder form as it's far cheaper. Both dissolve easily in water.
For the hourglass try VED. Read up on the protocol, the do's and don't' etc. Any doubts, feel free to ask. The thing is tombe consistent with it once you're accustomed to its use.
Thanks Jonbinspain, really appreciate the info about ALC/Citrulline and VED.
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May I ask what amount of citrulline was recommended?
In powder form I usually take a teaspoonfull in water. Others have used more.
See following link reference L-Citrulline, 1-2 grams per day to start ;D
Citrulline Benefits (http://www.peaktestosterone.com/Citrulline_Benefits.aspx)
Also this article on Vitamin C, always on empty stomach, Ester-C type.
How To Take Vitamin C (http://www.peaktestosterone.com/How_To_Take_Vitamin_C.aspx)
Imn25, I would hold off VED until you have had your appointment :)
Some statistics on Peyronie's
Penile pain 20-70% cases
Curvature 94% cases
Erectile dysfunction ED 32% cases
3 stages of disease, (1) Acute (2 weeks) (2) Inflammatory remodeling 12-18 Months, (3) Stabilization
phase thereafter.
Start Vitamin E, ensure it includes d-gamma ( I can PM you if you wish the USA brand I use specifically)
All the best for pregnancy plans and do your best to stay calm :)