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Author Topic: Advice for 17 year veteran would be greatly appreciated  (Read 2796 times)

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nicholaswoods

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Advice for 17 year veteran would be greatly appreciated
« on: May 22, 2013, 09:59:35 AM »

Hello,
I am 48 years old UK resident, had fibrosis of the penis for 17 years.
I used to have a perfectly normal strong penis and my life was full of hope. 
Then i had two penile traumas. 
Now I have lost over an inch in length, the whole is grossly narrowed, and conical, narrowest at the base. Sex became terrifying at the prospect of my penis snapping there when my female friend was above.  Below the base the narrowing extends into the perineum area which buckles under the stress of intercourse.  I have no bend.
(The initial traumas were:  a nurse violently withdrew a metal swab from my penis meatus, three days later the intense penile pain and circumferential hardening of the tunica albuginea began;
second was five months later when I saw a supposed expert on peyronies disease, who injected the base of my penis with prostaglandin e, and a scarily thick needle, to create an artificial erection to examine.  I developed greatest narrowing at the injection site, and I am sure cavernosal fibrosis).

The treatments I tried were: tamoxifen 20mgs daily which severely lessened the pain after the first five months;
I bought an iontophoresis machine and self administered Verapamil to the base of my penis for four months, but noticed no improvement;
I bought a vacuum device under the recommendation of Dr Levine in a telephone consultation who suggested I had circumferential peyronies.  It filled me out when in the machine, but i noticed tiny burst blood vessels on the skin surface, and after seeing another urologist who warned me that I would do serious harm to myself, I threw it away;
I bought nutrients and a strange wand from another peyronies website, which i stopped using after I lost confidence in the lack of evidence supporting these treatments;
I focussed on an anti inflammation diet, but this didn't seem to help it get better (though may have slowed the conditions worsening).

Since then decided to forget about the wretched fibrosis and non helpful expensive or dangerous treatments and get on with my life.
But recently I have been facing the reality that all this time my condition has been steadily worsening.
I can have sex, but it is nothing like it was, and have not tried it for over four years.  I have a female friend, but no one I can talk to about these issues in detail.

My course of action is as follows: I would buy a traction device to hopefully return  my girth and length  (though the following study found no improvement with girth <www.sciencedaily.com/releases/2009/03/090305080516.htm>.  I read that traction therapy is best for the acute stage of the disease rather than the chronic.   Might it make me worse ?
Buy a VED and make sure i used it safely (though I have found no study of it helping with girth or length)
Find a good urologist who would prescribe me with pentoxifylline an Erectile Dysfunction drug, L-arginine, Acetyl L -Carnitine, Ubiquinol.  But again me being in the very chronic stage of the disease are they relevent to me ?
My trouble is that I don't know where to find a good urologist, or sexual dysfunction doctor who could prescribe them for me. (The most famous peyronies specialist in this country is the one who injected me, and I don't trust him !)
Can anyone recommend me a doctor in the UK ?
Could I get these medicines in the UK without a doctor's prescription? and where could I buy them?
Any advice or comments would be greatly appreciated.
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james1947

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #1 on: May 22, 2013, 08:43:44 PM »

Hi Nicholas

I would like to express here my private opinion and experience and say that treatments works also in the acute stage.
My treatment is what you are intending to do. Not revolutionary results, but I have lost 2&1/2" length and half of the girth and gaining back 1/2" and 10% from the lost girth are OK, and I am continuing.
Regarding doctors :( my opinion is very negative in general but have also excellent doctors with big knowledge regarding Peyronies.
VED have to be done carefully, as traction also.
For me Pentox with low dose Cialis is the key.
You may find doctors and forum opinion regarding the doctors at:
http://www.peyroniesforum.net/index.php/board,37.0.html

Welcome to 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

funnyfarm

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #2 on: May 22, 2013, 11:45:13 PM »

There are quite a few members in the UK, so hopefully someone can answer your questions.

Any idea why you were prescribed tamoxifen ?   This is normally for breast cancer or to lower estrogen in Men.  I have not heard of it being used for peyronies pain
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When you are in tune with the unknown, the known is peaceful.

james1947

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #3 on: May 23, 2013, 03:11:55 PM »

Quote
Any idea why you were prescribed tamoxifen ?
Doctors?  :(

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

Obsie

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #4 on: May 23, 2013, 03:33:13 PM »

Studies some 20 years ago suggested Tamoxifen was a good treatment, The treatment of Peyronie's disease with tamoxifen. [Br J Urol. 1992] - PubMed - NCBI

but later another study did not show significant improvement in pain, curvature or plaque size in patients with Peyronie's disease who were treated with tamoxifen compared with those treated with placebo.
Evidence Central: Tamoxifen versus placebo in the treatment of Peyronie's disease.

Also Tamoxifen carries risks of adverse effects.
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nicholaswoods

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #5 on: May 23, 2013, 04:08:31 PM »

Thank you James for your very helpful response and funnyfarm and Obsie.
Mr David Ralph in the UK (Harley St) prescribed me the tamoxifen, I think he did the study quoted by Obsie. I really believe it helped with the pain in the acute stage.  Despite this I found him to be a terrible man who caused the greatest disaster of my life by injecting me.

I am curious to know if anyone has any strong recommendation for which traction device to use in my situation.
Cheers
Nicholas
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Obsie

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #6 on: May 23, 2013, 04:54:30 PM »

Nicholas,
Well, I hope you are not on tamoxifen anymore. Using it for pain management is, how to say...Far from a recommended therapy because the risks outweight the benefits. primo non nocere...
Regarding traction device I am an advocate of Penimaster Pro which I use. Phallosan could be a good choice too but I have not tried them. I strongly recommend avoiding any traction device that has strap or loop attached under the glans.
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lukewill

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #7 on: August 15, 2013, 12:17:23 PM »

Nicholas - I really feel for you - I too saw the dreaded Ralph who purports to be a leading expert in Peyronies Disease.

He is a charlatan pure and simple.

He gets away with it, because men are too embarrassed by their condition to sue him, and by association have their condition exposed.

He worsened my condition too - without a shadow of a doubt - and now I have refused surgery, which is the only thing he has ever pushed with me, he is no longer interested, as I am no longer of financial benefit to his barbaric suggestion of surgery to pay for his house in monte carlo or whatever it is he does with the obscene salary he gets from other's misery.

...and relax....

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inkhorn

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #8 on: August 17, 2013, 08:11:06 PM »

Obsie- What's the matter with the strap or loop under the glans? Thanks Inkhorn
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MattFoley

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #9 on: August 20, 2013, 11:14:41 AM »

Guys, I take Tamoxifen to control any excess estrogen that my body might create since I'm currently on TRT.

All I can say is that I have not experienced any adverse side effects from the Tamoxifen.

The reason the medical community looked at Tamoxifen early on is because it will block estrogen receptors from producing estrogen. The idea was that too much estrogen in the initial stages of Peyronie's only makes the Peyronie's worse. The interesting thing is that the researchers were on the right track but for some reason were not able to understand how Tamoxifen should be used to achieve truly positive results and for whom it would be best used.

As per my discussions with all my urologists, Tamoxifen would help Peyronie's patients who acquired Peyronie's at least partially from lowered testosterone. The Tamoxifen should be used to block the estrogen receptors so the testosterone can hammer the Peyronie's, possibly stopping it from getting worse and hopefully to begin turning it around.

The sad part is that doctors are only now seriously looking at testosterone as an important tool to fight Peyronie's. Considering how obvious the connection between Peyronie's and TRT is, I believe that the medical community has almost completely failed us in this horrific disorder. Thank God for this forum because the info culled from these pages is invaluable to us.

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Got Testosterone?

jackp

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Re: Advice for 17 year veteran would be greatly appreciated
« Reply #10 on: August 20, 2013, 05:08:39 PM »

In one of my visits to Dr. Milam, at Vanderbilt, I discussed my TRT with him. I told him my E2 was 50 with a mid range of about 20. I asked about the treatments. He told me that the side effects for men taking E2 reducing medications were worse than having a high level.

He also told me that my local primary care doctor was doing a better job of managing my testosterone(T) than the urologist. My body depletes T very fast.

When I had to have the difublitator/pacemaker implanted February 6Th the doctor took me off my TRT. I was off it until the last of May. My blood work came back with a total level of 35. Now he has put me back on 200mg every week. I could feel the effects of the first injection within 24 hours. My PSA was 0.4.

Many primary care doctors are now better at treating low testosterone than primary care urologist.

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