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I_H8_PD

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PLEASE HELP - NEW MEMBER
« on: November 25, 2009, 04:32:53 AM »

Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....:(. I hate my life.
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LWillisjr

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Re: PLEASE HELP - NEW MEMBER
« Reply #1 on: November 25, 2009, 08:46:15 AM »

Sorry you have had to deal with this at your age. I don't know if you have been reading much on this forum or are relatively new. But there are therapies you can try, buy I would need to know a little more history about yourself before I would be able to offer any advice. Feel free to post any additional information here, or you can private message or email me. I looked up the link on the picture you sent. I do know of another person who has a similar curve.

You said you have had this for 7-8 years. Is that as far back as you can remember having this, or do you know of a particular injury that caused this? Have you been to any doctors for any examinations or diagnosis?

If you find this is congenital, then most recommendations will probably lead toward surgery.

If this has been diagnosed as Peyronies Disease, then most of the "non-surgery" therapies are most effective during the first 12-18 months. I know that during the Xiaflex trials that potential study participants were disqualified if they had Peyronies Disease for more than 12 months. Since you have had this for a considerable time, then you may be facing surgery either way.

You need to get to a good male function specialist (if you haven't already) and get a proper diagnosis and outlook. Yes I know the thought of surgery is frightening, and unfortunately I don't know of any doctors to recommend in Australia. There have been some other members on this forum from Australia so maybe someone else has a recommendation.

I can tell you that some of us have had surgery with very positive outcomes. I guess my bottom line advice is don't give up. Don't let this crazy disease beat you down mentally or physically. There are things you can do. What defeats most of us is the unknown, or lack of information about what to do. That is what this forum is for. Lots of good information here.
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chiguy

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Re: PLEASE HELP - NEW MEMBER
« Reply #2 on: November 25, 2009, 08:53:06 AM »

I think karenb is in Australia.
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UK

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Re: PLEASE HELP - NEW MEMBER
« Reply #3 on: November 25, 2009, 09:52:11 AM »

If this has been diagnosed as Peyronies Disease, then most of the "non-surgery" therapies are most effective during the first 12-18 months. I know that during the Xiaflex trials that potential study participants were disqualified if they had Peyronies Disease for more than 12 months. Since you have had this for a considerable time, then you may be facing surgery either way.
Not sure where you read the bit about Xiaflex but did not think that length of disease would be a reason for disqualification. In fact I would say that less than 12 months would be the disqualifying factor
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LWillisjr

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Re: PLEASE HELP - NEW MEMBER
« Reply #4 on: November 25, 2009, 02:20:17 PM »

Not sure where you read the bit about Xiaflex but did not think that length of disease would be a reason for disqualification. In fact I would say that less than 12 months would be the disqualifying factor

I didn't read it, I personally know someone who went in for the study. You had to fill out a form and answer some questions. And this particular individual had Peyronies Disease for more than 12 months and was told he didn't qualify. They wanted to give the drug its "best chance of success" during the study and believe that it is most effective during the acute Peyronies Disease phase.

I think length of time plays a big factor in the effectiveness of drugs like Verapamil and Xiaflex. This is all based on the premise of whether it is true that the Peyronies plaque begins to calcify after a period of time. I know there have been many post on this forum as to whether people believe that or not. But I have learned that Peyronies Disease manifests itself in different ways. But in the scenario where plaque forms, stablizes, and then potnetially begins to calcify.....  It would make sense that These treatments are best tried as soon as possible.

Les
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Les - 10 yrs Peyronies Disease free
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UK

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Re: PLEASE HELP - NEW MEMBER
« Reply #5 on: November 25, 2009, 02:55:17 PM »

Les

I must challenge you as I strongly believe the information you have posted is incorrect. I don't dispute what you heard but that what you heard is wrong.

Here is the inclusion/exclusion criteria for Xiaflex
http://clinicaltrials.gov/ct2/show/NCT00755222?term=peyronie%27s&rank=1

I also checked a few posts and profiles of some of the study participants on this forum that went through the trials and some have had Peyronies Disease for several years prior.

This all fits with my understanding of the drug, the target market and how it works.

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beesting

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Re: PLEASE HELP - NEW MEMBER
« Reply #6 on: November 25, 2009, 03:29:30 PM »

dear i-h8-Peyronies Disease,

my id is beesting. read my first notes to this forum soonest. If you have had peyronies 7-8 years you are in almost in a complete disfunction state, as i was of past.

i will be making a series of letters stating a corrective cure to peyronies is more then possible but via same beesting treatments to arthritis victims. the sting of a bee is little compared to the doctor knife and post operations work needed to make you functional again. Frankly speaking go see a arthritis specialist that uses bee stings and He or she will treat your penis pronto. the results are sooner then 1 year of treatments, depending on the number of treatments per month. send your arthritis specialist to my comments at this forum for update to penis treatment via beestings.

sincerely,


beesting
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I_H8_PD

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Re: PLEASE HELP - NEW MEMBER
« Reply #7 on: November 25, 2009, 11:50:53 PM »

I read the criteria and it seems that those who are selectd are in fact the worser cases i.e. >30 degrees and having Peyronies Disease for > 6 months.

Perhaps even better results will be yielded in conjuntion with traction devices which im suprised they have not tried.

@beesting

I am not at all in a disfunctional state. I can get erections almost anytime i want and it has not changed since i began noticing i had Peyronies Disease. The only problem is the curvature.

Heres hoping.

Should i see my local GP?

And how long until the Xiaflex gets into the Phase III trial phase and then the market?
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ComeBacKid

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Time lapse to get xiaflex
« Reply #8 on: November 26, 2009, 04:25:14 AM »

Les,

Its true that the plaque does begin to calcify, but this a very long process, and may not be universal within the plaque.  Also pentox is shown to reverse calcification.  Perhaps pentox may be needed before a xiaflex shot, who knows?
As far as the study I do not know, perhaps the researchers falsely assumed a longer standing plaque won't respond as well to their treatment of xiaflex, and they want to produce good results, so they did indeed make this mandatory to have the disease 12 months or less, I'd hope that is not the case, but I suppose we will see in the report? Reading the link UK posted, it looks like you have peyronies at LEAST 6 months to get into the study, I doubt they would then cap the maximum amount of time with the disease at 12 months, that'd be a small window of volunteers to find...

IH8PD,

Wouldn't hurt to visit your doc to get some pentox, why not get on this cheap drug if your completely healthy?

Comebackid


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kristof

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Re: PLEASE HELP - NEW MEMBER
« Reply #9 on: January 28, 2010, 05:27:59 AM »

hi guys.
i have been diagnosed with Peyronies Disease for the past 4 month now.  i am going to the top/leading Urologist in the city.  something like this i am not leaving to my GP. 

he has only given me the Vitamin E treatment 200 mg twice a day.  all these other treatments he didnt even mention.  he said that things advertised on the Net were dud.

what am i to do, or take.  This Peyronies Disease has practically killed my relationship, sex is impossible, i have nearly a 45 degree upward change in my once dead straight and long penis.  Now it is 25% shorter too!

any suggestions? 

my urologist said i have to take the vit E for about 3-4 months.  so far no change is it.  the plaque/scar is still a bit painful to touch.  the urethea is also a bit tender too, from being bent!

the whole thing sucks, as i dont even remember hurting it in any way!??

k :'(
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BrooksBro

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Re: PLEASE HELP - NEW MEMBER
« Reply #10 on: January 28, 2010, 06:19:55 AM »

I would find a new urologist ASAP, one with knowledge and experience in effective treatment.  I believe agressive early treatment is going to be more successful.

I nearly busted a gut laughing recently when my original urologist turned up on a list of "top urologists" in my area.  HA!  I wonder what he paid to get on that list.  Remember, half of the doctors practicing medicine (and they are only practicing it) finished in the bottom half of their class.  Here is the bottom line question: If they had this condition, who would THEY go see?  I doubt they would take vitamin E and wait and see.

I have a new appreciation for physicians associated with teaching and research; they don't have closed minds.  My NEW urologist (Houston TX - Larry Lipshultz) is a colleague of Levine, or at least they are on the same page with treatment.  I thought about buying Levine's textbook and sending it to my old urologist.  I balked at the $150 cost.

My first urologist gave me Naproxen 500 mg 2x daily for the immediate pain and inflammation, 400 IU Vitamin E, and told me to come back in a year, or sooner if the pain did not go away.  The pain went away, and so did I.  On my 1st visit to the new doc, I came away with Trental, L-Argenine, nightly Viagra, the triple therapy as they call it, and a brochure for FastSize.  At my 2nd visit, he added topical testosterone.  My quality of life is improving.  Even my wife has noticed the FastSize is restoring lost length and girth.

At both visits, I was first examined by a physician in the urology residency program, and then by the doc.  It is reassuring to me to see 30+ years of experience being passed to new urologists.

If I did not feel comfortable with my new urologist and the treatment, I would consider traveling out-of-state to see one of the real experts.  It would be worth it to me.
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LWillisjr

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Re: PLEASE HELP - NEW MEMBER
« Reply #11 on: January 28, 2010, 09:35:15 PM »

hi guys.
i have been diagnosed with Peyronies Disease for the past 4 month now.  i am going to the top/leading Urologist in the city.  something like this i am not leaving to my GP. 

While you want a good urologist, you have to narrow your search even further. You want to find a good urologist who specialize in a particular field. Particularly you need to find a "Male sexual function" urologist who specializes in the treatment of Peyronies Disease. Unfortunately you can count most of these on your fingers (and a few toes). But they are by far hard to find unless you live in an area close to one mentioned or recommended on this forum. Following is a brief description of Dr. Levine's credentials as an example:
http://www.urologyspecialists.net/meetus.html


"Dr. Levine is a Professor and an attending surgeon in the Department of Urology at Rush University Medical Center in Chicago, Illinois, and Director of the Male Sexual Function and Fertility Program."

"Dr. Levine practices general urology and specializes in a variety of areas which include: buccal mucosa grafts to repair the most difficult urethral strictures; penile straightening procedures for Peyronie's disease; infertility; and erectile dysfunction (Erectile Dysfunction). "

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Les - 10 yrs Peyronies Disease free
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AndyP

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Re: PLEASE HELP - NEW MEMBER
« Reply #12 on: February 14, 2010, 08:37:32 AM »

Hello,

I am a new member also, looking for advice and some help to put me on the straight and narrow (ironic !)

I was diagnosed of Peyronies Disease in Oct 2009, I was given Potaba, and like others it made me ill and sick.
I stopped the potaba after a month or so, and started with Vitamin E and fastsize.

The fastsize was time consuming and I wasn't really seeing any change.

I decided to do more research and am now on various oral meds - Vitamin E, ALC, LA, Pentox (very recent), Colchinice, Neprionl.

I noticed after months that my curve is now a curve and not a sharp bend like before. I have no pain but still a bottle neck.

I want to now from the experience of yourselves, if Iam ok to drop the Neprionl. I ask because its very expensive and also PDI does not have the best reputation here.

Many thanks

Andy (24 years old)
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chiguy

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Re: PLEASE HELP - NEW MEMBER
« Reply #13 on: February 14, 2010, 10:15:16 AM »

Another approach is to use pentox, which is a medication that breaks down scar tissue. At the same time, use 2000 mg of l-arginine supplements per day. These two oral therapies combined with the fastsize should produce some results. I am 5-6 weeks into the fastsize and have noticed little change in the curve, but supposedly others report that the curve begins changing around weeks 6-8. The first month you are getting used to the device.

How long did you use the device?
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AndyP

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Re: PLEASE HELP - NEW MEMBER
« Reply #14 on: February 14, 2010, 10:31:38 AM »

Hi,

Thanks for the reply.

I was using Fastsize for about 3 months or so.

What about VED ? Is this easy to use ? is it it time consuming and is it worth it ?

What is your opinion on Neprinol ? should I dump it ?

thank you
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chiguy

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Re: PLEASE HELP - NEW MEMBER
« Reply #15 on: February 14, 2010, 12:18:37 PM »

The VED has its own thread. There are many on this forum who are very knowledgeable about the VED. I'm also not sure about neprinol as I only have used the pentox.

I have been on pentox, l-arginine, and fastsize combo for 6 weeks now. I have noticed fuller and healthier erections, slightly increased length and girth, but only tiny reduction, if any, in curvature.
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LWillisjr

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Re: PLEASE HELP - NEW MEMBER
« Reply #16 on: February 15, 2010, 05:17:50 PM »

AndyP,

It's hard to make generalzatoins on recommendations due to everyone's experience with Peyronies Disease being different. A lot depends on the severity of your curve, if your are experiencing any pain, and whether it causes problems during sex.

I don't know of many that have had any success with Neprinol. But if you think it is helping you at all I would be hesitant to change anything at this point. You mentioned that your curve is not as sharp which implies that you are seeing some improvment.

Les
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Les - 10 yrs Peyronies Disease free
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