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Author Topic: New Guy to Forum  (Read 6628 times)

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twilli

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New Guy to Forum
« on: February 08, 2010, 10:45:25 PM »

I am a 28 year old guy who developed Peyronie's disease about 2.5 to 3 years ago. I started noticing some small changes in erection quality before that time and have always had some curvature, but after an incident about 2.5 years ago I really started to notice some drastic changes. I have tried every pill imaginable (Viagra, Arginine, vitamin e, among others) as well as Verapamil treatments(no longterm help whatsoever, in fact I am still trying to decide if verapamil treatments actually may have worsened the problem. Now, I have erection problems and am in near constant pain when I do have erections. I havent had a fully ''normal'' erection in over 2 years and rarely enjoy sex anymore (I used to be the horniest guy too). My penis has lost some length and has a considerable girl loss along the shaft, which I hate b/c I used to have good girth. I am good physical health besides this, and like it has for many, has in some aspects ruined my life. Lucky for me, my girlfriend (and she is a very horny girl) seems to still really enjoy sex with me. But for me, sex is not so enjoyable anymore and I could see it causing problems in the future due to me being really depressed about it. I am at the point I have no clue at all what to do....I mean do I wait and try surgery?? There are so many potential complications from it and the recovery sounds horrible (although at this point Id do it for a guarantee it would work). Then, there is also the extreme cost associated with it. If anybody has an advise and even alternative suggestions to surgery that are not extremely costly, I am all ears. Thanks all.
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Tim468

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Re: New Guy to Forum
« Reply #1 on: February 09, 2010, 07:46:59 AM »

I would give Pentox a try first and give it a good long time (ie a year) to help.

If the lesions are stable, and the pain goes away (as it almost always does) then you should be able to decide what is the best choice for you.

However, if the pain is there or if the lesions keep on worsening, then surgery will not help as it will progress after surgery as well.

Unfortunately, waiting is really important. I would use Pentox for sure.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

twilli

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Re: New Guy to Forum
« Reply #2 on: February 10, 2010, 08:33:07 PM »

Where and how do I get Pentox? Also, is that to say that if I am still in pain now, that there is no cure or solution at all? B/c I still have some pain.
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Old Man

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Re: New Guy to Forum
« Reply #3 on: February 10, 2010, 10:27:38 PM »

twilli13:

Sorry to hear that you are having this pain problem with your Peyronies Disease. Pentox is available by prescription only in the USA, so you would need to ask your doctor/uro for one. Some are reluctant to prescribe it for Peyronies Disease, so you may have to argue with him/her to get it.

Tell your doctor about the forum and the success that guys are having with use of the Pentox. It is also known at Trental. Some countries around the world do not require a prescription for it if you live outside of the USA.

Some one who has used the med will surely jump in here with more information for you. As far as it known at the moment, there is no definite "cure" for Peyronies Disease only getting it to an arrested state. In the meantime, if you have not seen a uro or doctor for your case, by all means see one as soon as possible.

Old Man
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Age 90. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

Iceman

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Re: New Guy to Forum
« Reply #4 on: February 11, 2010, 12:33:37 AM »

get on the pentox - it helps with the pain - my pain was so bad that i used to rip the hair under my arms as hard as I could just to take my mind of it - Id bang my head, stub my toe, graze my knee, get dumped on a wave into the sand, fly to london return ( economy class), eat staples, watch friends (on tv), do my own tax return....ALL to stop thinking about the peri pain SO get onto the pentox as it helped me....

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tooyung4this

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Re: New Guy to Forum
« Reply #5 on: March 16, 2011, 01:30:07 AM »

hey im also in the same boat. Im 27, for the last 3 months about I had Peyronies disease and it feels like literally my life is over, im not even in a r/l and I dont want to look for one since, well my junk hurts! I took a crapload of Vit E for the last 2 months and it did nothing, infact the curve/dent are getting worse it seems. Im gonna attempt to get the pentox (i understand its tough finding someone to prescribe it), I also have COQ-10, Omega-3, L-Arguine and was wondering what the best dosage is, which is better VED or traction, and what can I expect from this disease.. will it intermittingly get worse as it seems to do? It seems it stays stable for a month or so, then one day you wake up and its considerably worse. I should also point out the Peyronies showed up a monthor so following inguinal hernia surgery.. any relation i wonder? Amyways, I think its great that this site exists without I think I would have just taken the doctors at their word and "dont look at it" (still cant believe a doctor told me this when I asked him what was wrong with me) Thanks fellas
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newguy

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Re: New Guy to Forum
« Reply #6 on: March 16, 2011, 08:45:23 AM »



A vitamin E approach, in my view, isn't likely to do any good. I would take Pentox, L-Arginine, CoQ10, Cialis as a minimum, and probably use the VED at this stage (rather than traction) due to the fact your condition still seems very active. As the VED expands the penis, as well as possibly workiign via other mechanisms, it might counter these changes. You really need to get on pentox though. That would be my prioritiy in your shoes.
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restore

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Re: New Guy to Forum
« Reply #7 on: March 16, 2011, 10:43:56 AM »

Tootung4this, where are you located?  I'm in Alabama, and found a great doc who prescribes pentox in Birmingham.  Check out the doctor list who are particupating in the Xialex trial, and find one near you, they most likely believe in pentox as worthwhile. 
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George999

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Re: New Guy to Forum
« Reply #8 on: March 16, 2011, 12:13:51 PM »

Restore, he is in the New York City area.  Hopefully, someone here will come up with a referral suggestion for him.  - George
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Rockout

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Re: New Guy to Forum
« Reply #9 on: March 16, 2011, 12:26:34 PM »

Welcome to the forum!

I just started on Pentox this week, today is day 3. My Uro did not know what is was but I told him about this forum and a local prominent Uro who prescribes it and the success many of you have had with it and he prescribed it to me up here in Canada. It is known as Trental here but the pharmacy issued me APO Pentoxifylline-SR (400mg x 3/daily).

I am now going to start Ubiquinol and a VED protocol.
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newguy

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Re: New Guy to Forum
« Reply #10 on: March 16, 2011, 12:38:31 PM »

Welcome to the forum!

I just started on Pentox this week, today is day 3. My Uro did not know what is was but I told him about this forum and a local prominent Uro who prescribes it and the success many of you have had with it and he prescribed it to me up here in Canada. It is known as Trental here but the pharmacy issued me APO Pentoxifylline-SR (400mg x 3/daily).

I am now going to start Ubiquinol and a VED protocol.

Rockout - It's good to hear that the push to get pentox appears to be getting a little easier, due to this forum. Let's hope if/when new oral treatments are recognised, we're able to use this same determination, and ensure that people have access to them.
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Rockout

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Re: New Guy to Forum
« Reply #11 on: March 16, 2011, 12:54:45 PM »


Rockout - It's good to hear that the push to get pentox appears to be getting a little easier, due to this forum. Let's hope if/when new oral treatments are recognised, we're able to use this same determination, and ensure that people have access to them.

My Uro (who is the Chief of Uro) for a large Toronto hospital, seemed open minded enough to prescribe it - he looked up Trental in his big meds book and had no idea why it would work for us but was willing to start me on it.

He is also sending me to a Uro who I told him about who specializes in Peyronies Disease, thanks to Mike67.

I am also going to follow-up with my initial Uro, if nothing else, to keep him updated on my status and potential (in-directly) help others who come to see him. He is old school, take vitimin E and Celebrex for eight months and then maybe try Potaba.

Like so many other things in life, I think we need to take charge of our own destiny and start driving the bus as opposed to being relegated to the passenger seat.
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fireguy

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Re: New Guy to Forum
« Reply #12 on: March 16, 2011, 01:21:11 PM »

Hi new guy. I am also  a newbie to this site. I am waiting for a reply from another person who posts with regards to a peyronies specialist in the Toronto area. I see that you are recommending Pentox to others. Is this medication for pain?  I don't have much pain anymore , but have a heavy curve in my penis which makes sex difficult.
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Rockout

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Re: New Guy to Forum
« Reply #13 on: March 16, 2011, 01:44:39 PM »

Hi new guy. I am also  a newbie to this site. I am waiting for a reply from another person who posts with regards to a peyronies specialist in the Toronto area. I see that you are recommending Pentox to others. Is this medication for pain?  I don't have much pain anymore , but have a heavy curve in my penis which makes sex difficult.

I have never had pain per say with Peyronies, just two curves and the turtlehead effect and its associated discomfort (not pain). Pentox seems to be a recommended approach on this forum, pain or not.
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newguy

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Re: New Guy to Forum
« Reply #14 on: March 16, 2011, 06:11:52 PM »

Hi new guy. I am also  a newbie to this site. I am waiting for a reply from another person who posts with regards to a peyronies specialist in the Toronto area. I see that you are recommending Pentox to others. Is this medication for pain?  I don't have much pain anymore , but have a heavy curve in my penis which makes sex difficult.

FireGuy - Pentox is not specifically prescribed to deal with pain. It can help reduce curvature in some individuals, so might be of use to you. According to other studies over the past few months CoQ10 and Cialis might also be of use to you.
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LWillisjr

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Re: New Guy to Forum
« Reply #15 on: March 16, 2011, 07:17:12 PM »


Like so many other things in life, I think we need to take charge of our own destiny and start driving the bus as opposed to being relegated to the passenger seat.


Rockout,
I couldn't agree with you more. My wife and I have both some unique health issues as we have gotten older. And at some point we eventually learned that although doctors try to help (and I believe they do), they are still human. They have their own peculiarities, pet peeves, preferences, etc. They aren't the medical gods we were taught to think they are when growing up. And with the vast amount of knowledge now on the Internet, we need to look at all the data as it relates to each to each of us. Let us not forget we are in the driver's seat when it comes to our own health.

Les
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Les - 10 yrs Peyronies Disease free
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tooyung4this

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Re: New Guy to Forum
« Reply #16 on: March 16, 2011, 09:03:19 PM »

I would like to thank all for the help and support! Im fighting with my insurance company, and the state of New York to see this doctor (Dr Mulhall), my insurance tells me this is a "fertility issue" and apparently that isnt their problem, nor is it covered. Im gonna try to push the doc im currently seeing for the pentox although I doubt he'll give it to me, I think the fact that I got jerked around by the system (pardon the pun lol) and not had ANY treatment is allowing it to get worse(the Peyronies), or maybe it would have regardless, I dunno. Very frustrating, but thank god for this forum cause without it i'd be suffering in darkness. Scary to wake up one morning and find your dick is bent! I promise though if im denied treatment I will do anything in my power to make peyronies a household name!! My only question to you guys is: what is the dosage daily regarding the COQ-10 and L-Arguine and where does one find a "VED" ? The only time I ever even heard of one of those was in the "Austin Powers" movie, ( i thought it was a joke lol) Thank you all and good luck to everyone suffering with this god-aweful illness : )
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George999

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Re: New Guy to Forum
« Reply #17 on: March 16, 2011, 09:05:51 PM »

CoQ10 would be 100mg three times per day, but a little more wouldn't hurt you any.  - George
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Worried Guy

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Re: New Guy to Forum
« Reply #18 on: March 17, 2011, 04:27:42 AM »

I got fed up with taking so many capsules so now I've just gone for the higher strength stuff.  Swanson were doing 90x200mg Coq10 on by one get one free at $12.99.  I now take 1 in the morning and evening so 400g.  I also purchased Super Strength L-Arginine 900 mg 90 Caps for just $5.49 and that was buy one get one free also.
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Rockout

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Re: New Guy to Forum
« Reply #19 on: March 17, 2011, 06:28:09 AM »

I thought we were supposed to buy the Ubiquinol version of Co Q10 - the reduced form, rather than plain jane C0 Q10.
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Worried Guy

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Re: New Guy to Forum
« Reply #20 on: March 17, 2011, 07:22:27 AM »

Rockout, that depends on how old you are and how deep your wallet is!!!  I believe the study only used the plain Jane version!
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George999

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Re: New Guy to Forum
« Reply #21 on: March 17, 2011, 11:09:30 AM »

The rule of thumb is, the older you are, the more benefit you will get out of Ubiquinol as opposed to CoQ10.  The reality is that no matter how shallow your pockets might be, if you are 60yrs old, you are not going to get much, if any, benefit out of plain jane CoQ10.  On the other hand, at 27, plain jane CoQ10 should work just fine.

There is a reason that doses of CoQ10 are split up through the day.  If you combine them, you will yo-yo your blood concentrations up and down and not get prolonged coverage required for optimal benefit.  When you get a prescription that requires taking a pill three times a day, you will have big problems if you take all three at one time.  Same with supplements.  The successful study specified three times a day.  If you want the kind of results demonstrated in the study, you better not take it all at once.

- George
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Rockout

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Re: New Guy to Forum
« Reply #22 on: March 17, 2011, 11:17:05 AM »

When you get a prescription that requires taking a pill three times a day, you will have big problems if you take all three at one time.
- George

But George, I am a typical guy, when it said 400 degrees in the oven for thirty minutes, I figured three minutes at 4000 degrees would be the same thing!!!  :D

Thanks for the explanation of the age corelation to Co Q10 and Ubiguinol.
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