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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Initial post  (Read 3201 times)

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Iseilinus

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Initial post
« on: February 09, 2012, 01:41:01 AM »

Hi,

I have lurked this forum/been diagnosed for a few months now and would like to start posting.  I have had no sex partner for over a decade, so my main issues are the pain and deformity. Although I apparently have quite a severe case 90 degrees+), it has mainly been an annoyance for me rather than a devastating emotional blow as is the case for some here with partners. Understandably so.

I have a urologist who I was not impressed with at first. Picked him out of the phone book. After reading a number of accounts here, I have changed my mind. He is apparently one of the better ones. At least he has never tried to inject me with anything. He has me on Pentox, Cialis, and L-Arganine, with Gabapentin for the pain. He hooked me up with a company that provided a good VED, and got no $$ for the referral. He knows about Xiaflex and says he is open to trying out things if I want to. Although he does surgeries like the Nesbit, he gave up after I told him the surgery was "not for me" (I did let him show me a Youtube video clip to humor him).  

I finally got serious about dealing with this affliction about a month ago when my urine stream split in two and it became difficult to aim. I could feel areas of calcification setting in and see all those uniquely descriptive terms manifesting; "buckling, waisting, indentations, hour-glassing, twisting" and what have you. I have been trying a few new things that nobody has mentioned here on this forum as far as I can see. These modalities are based on internet research and common sense. My main guiding principle is to not make anything worse or spend a lot of bucks chasing after rainbows. Luckily, I was able to do everything I needed to with stuff I had lying around the house.

Either the condition has serendipitously improved on its own, or something(s) of my new regimen I cooked up is/are working.  My urine stream is normal now, the pain is much better, and my member looks and feels better. If its not a fluke and the results hold or improve, I will get more specific.   I am new and don't want to seem to have any answers because I really don't.  I might just be going thru a spontaneous good patch and things could go south just as quickly.  I am going to have some questions about the VED, it seems like an art form to get things just right in that department. And I definitely do not want to hurt myself with it.

I think I got this condition from the enormous amount of BP meds I have been taking, including Metoprolol/beta blockers. I quit that med as soon as I started to notice curvature problems, but apparently the damage is done until I can fix it. I believe that in time, I will fix it.



    
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jackp

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Re: Initial post
« Reply #1 on: February 09, 2012, 07:15:40 AM »

There is a lot of good information on VED usage in the VED thread. Old Man is a pro at the VED and helped me and a lot of others. I have posted the single cylinder exercise and if you have any questions please feel free to contact me.

You did not say how long you have had peyronies. You said that there is some improvement. My curve went away at about 18 months. I have read somewhere that about 1/3 of the cases of peyronies where the curve gets better at 18 months. If you are one of the lucky ones that can happen to you. The down side is loss of penile size.

To help combat the loss of penile size the VED is the only real help. It takes time but that is one thing that helped me.

Jackp
http://jackp-penileimplant.blogspot.com/
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Iseilinus

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Re: Initial post
« Reply #2 on: February 09, 2012, 09:43:38 AM »

jackp thanks.
Yes, I am looking over the VED section and finding help. It would be nice if the devices had a suction measurement indicator.  I think I started symptoms of peyronies about 6-8 months ago. It was getting steadily worse until I decided to "up  my game" about a month ago and hit it with everything. It seems to have leveled out and is possibly reversing now.  Perhaps getting on it early is beneficial.

You did not say how long you have had peyronies.

I know we are not supposed to post links, but I would be interested in folks impressions of the science of this article:
Quote
Effectiveness of antioxidants (propolis, blueberry, vitamin E) associated with verapamil in the medical management of Peyronie’s disease: a study of 151 cases

    G. Paulis1,
    R. D’Ascenzo2,
    P. Nupieri2,
    G. De Giorgio3,
    G. Orsolini2,
    T. Brancato2,
    R. Alvaro4

Article first published online: 27 SEP 2011
You can find the full text in scirus.com by putting the title in the search box.
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james1947

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Re: Initial post
« Reply #3 on: February 09, 2012, 09:07:01 PM »

Iseilinius
you have written in your first post:
Quote
I have been trying a few new things that nobody has mentioned here on this forum as far as I can see. These modalities are based on internet research and common sense. My main guiding principle is to not make anything worse or spend a lot of bucks chasing after rainbows. Luckily, I was able to do everything I needed to with stuff I had lying around the house.
Can you detail what you have done? Taking in consideration that it helped you lot, it may help others.
Or maybe your uro prescription of Pentox, Cialis and L-Arginine hepled? How long time you are using them?
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

Iseilinus

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Re: Initial post
« Reply #4 on: February 09, 2012, 11:31:26 PM »

james1947,

I am a newbie here, so I won't be discussing the specifics of my regimen until folks get to know me better here.  Also, like I said, I do not know what is helping at this point, and I am doing all the standard stuff in addition to my experimental modalities.  I just get the impression that if for example I posted that I have been soaking my penis in warm green tea for half an hour a day (I am NOT really), then there would be guys all over the world firing up the tea kettles to try it out.  Why do that when I am so new into this and could be wasting time for guys that should be focusing on the VED, for example?

With a little more time I can sort this out and identify what is really working. If anything is at all.  I did it with high blood pressure, and I can do it with this.  I have found that not giving up goes a long way for health stuff like this. Sometimes you are almost there, and just need to make a few additional observations and adjustments.   The main thing is to not make things worse while you are seeking improvements "first, do no harm".  I will post here and share all I know if I think I can be helpful in any way. Promise.

To directly answer your other questions, I have been on the Pentox and Cialis for about 6 months, starting with very low doses and ramping up. I think the Pentox is helping, but not really the Cialis, which can give me headaches.  Probably will drop the Cialis and increase the Pentox.  I have been taking both L-Arginine and L-Citulline for an auto-immune disorder for over a year and since well before the Peyronies Disease started, so I doubt that L-Arginine is actually doing much for the Peyronies Disease.

Can you detail what you have done? Taking in consideration that it helped you lot, it may help others.
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james1947

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Re: Initial post
« Reply #5 on: February 10, 2012, 07:22:51 AM »

I understand your concern disclosing not proved treatments. Update the forum if you have some success.
Myself I used a Chinese tea for migraines I had from very young age and I was not disclosing the subject to no one until I see that it's really work, same with some Chinese herb capsules that melted away my kidney and bladder stones.
Try low dose Viagra (I am cutting 100mg to 8 pcs) instead of Cialis. Cialis made me also headaches, flushing and over night sweat.
Use VED, helping me and helps many others on the forum.
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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