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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: new member here...  (Read 1660 times)

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Mikey89

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new member here...
« on: May 21, 2015, 08:33:57 PM »

Hi All,

About 4 months ago, I started to get a pain on the top side of my penis when I had an erection. At first, as I do with most pains/illnesses, I ignored it and figured it would go away on its own. Unfortunately, the pain persisted and I finally built up the courage to go to a urologist. That's when I first learned of Peyronies. The doctor told me there was really nothing he could do right now and to come back in a couple of months to check in. Since my initial visit, the pain level has been about the same and the curvature much worse. There is a bend up and to the left. It is pretty disheartening and has been tough to accept, especially at such a young age (24). Not really sure where to go from here which is how I ended up on this forum. I go back to the doctor in a couple of weeks. I have been taking a vitamin E supplement daily and applying vitamin E cream every night. Would really appreciate any advice that anyone here can offer.

Cheers
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james1947

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Re: new member here...
« Reply #1 on: May 21, 2015, 10:39:49 PM »

Mikey

You found an incompetent doctor.
Have a second opinion as soon as you can from a Peyronies specialist and start treatment.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

wonderbread1662

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Re: new member here...
« Reply #2 on: May 22, 2015, 02:34:33 AM »

Hey Mikey,

James is right in that you should get a different urologist for sure. Waiting is the worst thing you can do for this condition. I suggest reading up on this forum to get more info. You can also read my past posts if you want.

Vitamin E won't hurt you but it will do nothing for peyronies. You should get these as they will help alot.
Pentoxifylline (Pentox for short) 400mg 3x a day. This you need a doctors order for so try your BEST to get him to prescribe it. It got rid of all my erect and flaccid pain and is helping with my bend and stopping my condition from getting worse.

Cialis 5mg (goes really well with pentox to soften the plaque) pentox and cialis 5mg are going to help the most in my opinion (on the oral treatment side of things of course).
I am not able to afford cialis but if I could, I would definitely take it. I don't remember if you need a doctors order for cialis.
You can get these ones below now while you wait.

Citrulline Malate 2grams a day (powdered form to go with a cup of water)

Acetyl- Carnitine 2 grams a day (powdered form to go with a cup of water)

CoQ10 300mg 1x a day

I would read up on traction devices and VED's as they have helped alot of members along with the oral treatments I typed above. If you can it would really help you to see an actual specialist in peyronies. Most urologists don't know that much about peyronies and tell you to "wait and see" like yours did and well that will just make it worse most likely. This is a doctors list of some of the known peyronies specialists http://www.peyroniesforum.net/index.php/topic,4063.0.html that might be in your area. Surgery is quite risky and is seen as a last resort on the forums. It seems treatment goes like this: oral medication, traction or VED (or both), to injections, and then surgery.

Read as much as you can on the forums and ask questions if you can't find the answers in posts or the search feature on here. I know it seems scary right now but your urologist is wrong. There are things you can do about this awful condition and you're not alone! Check out this as well as it has ALOT of useful information. http://www.peyroniesforum.net/index.php/topic,3180.0.html

Good luck man and keep us updated on how you're doing.
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Jonbinspain

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Re: new member here...
« Reply #3 on: May 22, 2015, 03:07:53 AM »

I can only concur with what's been said. Unfortunately, totally useless Urologists, like the one you've had the misfortune to see, do exist. I suspect that if it was his dick that was bent and painful he'd be a hell of a lot more concerned! 

You've been given the proper advice. Read all you can here. Any question, I'm sure somebody here will be able to answer.
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LFCE

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Re: new member here...
« Reply #4 on: May 22, 2015, 07:04:46 AM »

Hi Mikey,

Just to say hi and support you. I'm quite young as well (31) and started the same process some months ago... I was given the same instructions "wait & see" and vitamin E. Thanks to this forum I decided to go to a Peyronies' specialist who immediately put me on pentox, cialis and traction... I'm just starting.

As you said it's been a tough time but we need to be strong and faithful!

All the best for you!
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Mikey89

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Re: new member here...
« Reply #5 on: May 22, 2015, 09:33:40 PM »

Thanks guys. I'm going to check out some of the specialists around the forums and get an appointment as soon as I can. I know vitamin E doesn't do anything, but I figured what the heck it cant hurt. I'm thinking I'd like to start with pentox although that seems like it only addresses the pain? I still have a good amount of pain with erections, but the curvature is really what has me down. This forum is great, and there are enough inspirational stories and glimmers of hope to keep me going. 
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james1947

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Re: new member here...
« Reply #6 on: May 22, 2015, 10:47:59 PM »

Mikey

Proposing you to read more about Pentox (have a lot of information on the forum)
Your sentence:
Quote
I'd like to start with pentox although that seems like it only addresses the pain?
Completely wrong.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Mikey89

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Re: new member here...
« Reply #7 on: May 23, 2015, 09:56:11 AM »

I will read up on Pentox... again, I'm new here so bare with me during the learning stage  :D
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james1947

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Re: new member here...
« Reply #8 on: May 23, 2015, 05:13:03 PM »

By the way Mikey, I am not promoting Pentox, I have no shares in the manufacturing companies (I wish I had ;D)
I started on Pentox after making a compilation of the forum members results.
Pentox have also negative aspects, it weakening the immune system.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Mikey89

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Re: new member here...
« Reply #9 on: June 13, 2015, 10:46:54 AM »

Hey All,

little update here.. So I went back to my uro yesterday and we talked through a few options. He recommended Xiaflex, and after reading up on this forum and learning more about different options, I asked about pentox. He was on board and wrote me a prescription for pentox (starting today 400mg once daily), low-dose cialas (5mg), and colcrys. I've also been taking 400mg of natural vitamin E (although it doesnt seem to help, I figure it really cant hurt). I'm excited to start attacking this more aggressively. However, he was not optimistic about the effectiveness of the mix of various oral treatments. Kind of put a damper on my excitement but reading about the success of pentox, cialas, etc. on the forum gives me hope. I am going to give this a shot for at least a couple of months before strongly considering Xiaflex treatment.

Mikey
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wonderbread1662

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Re: new member here...
« Reply #10 on: June 13, 2015, 12:41:24 PM »

Hey Mikey89,

Xiaflex has shown some great results for some guys so that is pretty encouraging. If you decide to go through with it then you might want to skip the numbing shot. I have not had the xiaflex shots mind you but I have read from other members that the numbing shot doesn't seem to be worth it. The main shot won't hurt that much but it is an extra needle that has a risk of causing more damage. I would also assume that two shots would hurt more after the numbing has worn off.

I think you should try traction along with the meds you got. There has been good results with traction. And since your main problem seems to be the bending then I feel traction is the way to go in your case. Attacking the disease physically and with meds seems like a good idea. Have you lost any length or girth? Do you have any indentations at all? If so, then a use of a VED would also be a good idea. I would try those out first if I were you as it can save you a lot of money. Just be careful in that you don't over pump the VED or leave the traction device on for too long. 
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LWillisjr

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Re: new member here...
« Reply #11 on: June 13, 2015, 01:54:31 PM »

I'm not the expert on needle gauge (size). But just be aware that the needle used to give the numbing shot is small. The needle for Varapamil/Xiaflex is larger.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
My History

james1947

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Re: new member here...
« Reply #12 on: June 13, 2015, 04:25:55 PM »

As an introductory topic, this topic is locked.
Please open topics/post on the relevant boards.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
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