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steamer

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the Doctors
« on: August 26, 2012, 09:27:37 PM »

my wife sent an email to the doctors tv show. that was about a week ago. she still hasn't heard anything back from them. if they do a show about this crap we have i wonder if they'll have actual sufferers or just give it lip service. shoot, i'll go on! my way of thinking is that this needs to be brought out into the open so maybe more research will get funded or cause more of an interest in it.
steamer
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james1947

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Re: the Doctors
« Reply #1 on: August 27, 2012, 06:20:01 AM »

The veterans on this forum has done a big effort in the past to increase the awareness to Peyronies.
The results? I don't know. I don't want to be pessimistic, but read this board to get to your own conclusion.
Maybe we should begin again to do something. Maybe our new members (including myself) should invest time in the subject and bring up new ideas.
Appreciate your wife, her try is a good step, hop will bear results. :)

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

steamer

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Re: the Doctors
« Reply #2 on: August 27, 2012, 04:16:08 PM »

i know what you mean. but i figure that maybe, just maybe, if we keep hammering on them one day something will happen.
who knows, maybe it'll be the women who can get the ball rolling.

steamer
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james1947

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Re: the Doctors
« Reply #3 on: August 27, 2012, 07:21:04 PM »

I hope that other forum members will jump in, especially new forum members with new ideas to do something in the subject.
I will be happy to participate in any new effort to increase the awareness to this disease.

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

steamer

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Re: the Doctors
« Reply #4 on: August 31, 2012, 08:43:28 PM »

whoa! i was just reading "highlights of women speaking about peyronies" and i noticed it was from 2005 so if it was noticed i apologize to bring it up again. there was a lot of talking about the women getting involved in getting things done as far as research, awareness, etc. has there been any progress on this front?
just wondering,

steamer
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Hawk

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Re: the Doctors
« Reply #5 on: September 01, 2012, 01:56:24 PM »

We have almost 400 women registered and more than 150 that have posted either on the main forum or the private Ladies Room (or both).  I am disappointed however that the participation never got really rolling.  At one point it looked like it would.  We had at least a couple posts a day but then it just died.  Christine did all she could to foster that along but even spouses of active members just seemed to lose interest.

Unfortunately interest generates interest and vise versa.  Now when a woman comes along needing to chat she gets little support or response so she also soon disappears.
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steamer

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Re: the Doctors
« Reply #6 on: September 02, 2012, 04:55:19 PM »

it would be interesting to find out the why's of the loss of interest. maybe it's going to take a joint effort of sufferers and spouses or significant others to bring this about.

steamer
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Hawk

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Re: the Doctors
« Reply #7 on: September 03, 2012, 07:36:59 PM »

This is not some kind of carefully crafted official statement, just a gut impulse. 

I have to think if men are sitting around waiting and hoping women will come take care of organizing a campaign against a male disease it is pathetic.  What is up with that?  Do we figure this is a job for our mothers, our wives and girl-friends, or maybe our sisters or daughters???
Why would we need them to do this job for us? Are we too stupid to organize?  Do we lack courage to take a stand?  Are we really not that concerned about these issues and this is just like hanging out at a bar where we enjoy bitching about a problem rather than fixing it?  Men are always portrayed, even sometimes negatively, as fixers.  I have failed to see that attribute with the 4,000 registered men on this forum even though every other forum that has existed offered far less.

I may be wrong but I suspect the real underlying problem is that we think we can figure it out and fix it in private.  The odds do not favor that outcome. There is a greater likelihood that a scientist with Peyronies Disease will spill a chemical formula on his lap and accidentally find a cure while trying to develop a more durable house paint.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

fubar

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Re: the Doctors
« Reply #8 on: September 04, 2012, 03:15:37 AM »

Hawk

I totally back you up i feel the same? Where are the men of action. We should be Legion !

Fubaf
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ComeBacKid

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Re: the Doctors
« Reply #9 on: September 12, 2012, 10:51:36 PM »

I ditto what Hawk said I would add that I think to many men are to full of pride and arroagant to come out and do something.  Quit being embarrased and acting like little whiners, where the hell is everybody?  I know I've been pretty disappointed by the enthusiasium for advocacy and action regarding peyronies.  Now when it comes to women they will organize like a huge union and go on a tear for breast cancer without shame, the men, where are they, even for prostate cancer?

Comebackid
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james1947

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Re: the Doctors
« Reply #10 on: September 13, 2012, 06:46:57 AM »

ComeBacKid

I can talk about myself. I really don't have the courage to make a TV or a printed media interview and to let all the people know about my problems.
The only people that knows about my Peyronies and Erectile Dysfunction are my wife, my uro, all the forum members and guests reading my posts.
I don't see at the moment how I will be able to talk about the subject in public.

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

ComeBacKid

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Re: the Doctors
« Reply #11 on: September 15, 2012, 01:55:35 AM »

James,

I meant just doing stuff on the forum where people can't see you, you've been very active, but a lot of our members aren't, keep up the good work your efforts have made a big difference on here for organized boards and topics.

Comebackid
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james1947

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Re: the Doctors
« Reply #12 on: September 15, 2012, 04:56:44 PM »

ComeBacKid

Thank you for the compliments.
The reason that I am "hyper active" is because this is my treatment for the psychological problems I have from the Peyronies.

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

ComeBacKid

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Re: the Doctors
« Reply #13 on: September 23, 2012, 12:46:38 AM »

James,

You picked a good way to cope, rather than sitting around and complaining get active and do SOMETHING positive! 

Comebackid
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Iseilinus

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Re: the Doctors
« Reply #14 on: October 25, 2012, 12:33:26 PM »

Some thoughts; 1) There is probably no shortage of men with a functional penis out there.  This is not a woman's problem, although some women may remain sentimentally attached to a stricken male.  That would be her choice, and there are a number of women that do not view sex as the primary purpose of a male/female relationship, so they can let it go. Women are not going to jump in and fix things here.

2) Doctors are profit driven creatures, and many of them really could care less about the impact Peyronies has on patients.  There is always a subset of professionals that will even blame the illness on the patient even though the etiology is obscure and unproven.  That is even worse than no treatment at all.

3) While there are treatments for Peyronies, they are spotty and only partially effective in most cases.  Presently there ARE no reliable and consistently effective treatments.  There are only drugs , supplements, and other modalities which may help in some cases, and have no apparent downside other than cost or time invested. 

4) Xiaflex news seems just around the corner, and it is disappointing how little information about this new potential treatment exists.  Progress is excruciatingly slow on this front. Again, not much to discuss at this point in time. Just wait and wait some more. Even if it helps insurance probably will not cover treatment with it for some time to come. So one obstacle will be replaced by yet another wall of resistance. Its daunting.

I have been relatively quiet in this forum, but have been trying things that I believe may work without a huge cost in time or money, as well as experimenting with other stuff that I will not talk about on this forum. VED, Pentox, and L-Arginine are first line options and have been discussed on this forum completely; there is not much to add. I view my journey as a solitary one, and do not want to raise anyone's hopes or expectations needlessly since that is not responsible behavior.  I if stumble on to anything really meaningful or effective,  I will probably share it here.  Maybe not, since a "study of one" is not scientifically very valid in any case. 
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Hawk

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Re: the Doctors
« Reply #15 on: October 25, 2012, 03:36:24 PM »

I have been relatively quiet in this forum, but have been trying things that I believe may work without a huge cost in time or money, as well as experimenting with other stuff that I will not talk about on this forum. ... I view my journey as a solitary one, and do not want to raise anyone's hopes or expectations needlessly since that is not responsible behavior.  I if stumble on to anything really meaningful or effective,  I will probably share it here.  Maybe not, since a "study of one" is not scientifically very valid in any case.

Iseilinus,
This obviously is not a research forum but rather a support forum.  As such we are interested in your challenges, ideas, ups, and downs.  Not just the results, but the journey as well, so no need to meet the standard of a scientifically based study to post.

Hawk
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Hawk - Updated 10/27/18 - Peyronies Society Forums

ComeBacKid

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Re: the Doctors
« Reply #16 on: October 26, 2012, 01:18:16 PM »

Iseilinus,

I'd echo Hawk's comments, this is not a think tank on economic policy or a research lab testing supplements.  We are all here because we have a similar problem, and as a group we are more effective than attacking this by ourselves.  While people who produce pharmacutical drugs are held to prove their drugs work (as they should) we aren't here.  If someone works we share it, for instance pentox has worked for me , I've seen significant improvment.  When I stop taking pentox, its clear slowly my penis begins to harden, bend, and shrink, at a very very slow pace, giving credibility to alot of Doctors and members on here theory of an over active immune system. 

A lot of Doctors don't seem to care, but some do and are at least trying out of the box treatments, thats better than prescribing vitamin E which is a joke.  Don't get to down on yourself, and don't look at this forum as a hurdle to clear when it comes to posting stuff, but rather as a light at the end of a long dark tunnel.

Comebackid
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Iseilinus

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Re: the Doctors
« Reply #17 on: October 26, 2012, 03:51:44 PM »

Hi Comeback Kid,

I am not down on myself, I just view this forum as a place for emotional support and only the well accepted basics of Peyronies treatment like VED or Pentox; which I use and have gained good info about here.  If I were to try something "out of the box" such as direct envenomation of the penile shaft with scorpion or rattlesnake venom (this is only a hypothetical - don't anybody try it please), then I will just keep such activities to myself. 

Regards,
Iseilinus

Iseilinus,

I'd echo Hawk's comments, this is not a think tank on economic policy or a research lab testing supplements.  We are all here because we have a similar problem, and as a group we are more effective than attacking this by ourselves.  While people who produce pharmacutical drugs are held to prove their drugs work (as they should) we aren't here.  If someone works we share it, for instance pentox has worked for me , I've seen significant improvment.  When I stop taking pentox, its clear slowly my penis begins to harden, bend, and shrink, at a very very slow pace, giving credibility to alot of Doctors and members on here theory of an over active immune system. 

A lot of Doctors don't seem to care, but some do and are at least trying out of the box treatments, thats better than prescribing vitamin E which is a joke.  Don't get to down on yourself, and don't look at this forum as a hurdle to clear when it comes to posting stuff, but rather as a light at the end of a long dark tunnel.

Comebackid
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ComeBacKid

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Re: the Doctors
« Reply #18 on: November 04, 2012, 07:42:34 PM »

Iseilinus,

Most doctors see pentox as an "out of the box" treatment, I couldn't get an actual urologist doctor to give it to me, instead I had to seek other avenues.  When I mentioned the VED at a top urologist I almost got laughed out of the room.  I've used both, and they both work,  both are seen as "out of the box" by most urologists.

Comebackid
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Iseilinus

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Re: the Doctors
« Reply #19 on: November 04, 2012, 11:38:02 PM »

Hi ComeBackid,

Point taken.  I guess I view those treatments as standard fare because my urologist put me on Pentox. L-Arginine, and arranged for a good VED device right away. He's a bit weird though. I have not seen him in a while, but the last time I did, he was talking about an (hypothetical) experimental treatment of inducing a chemical erection, with anasthesia, then breaking the penis by force, and bandage/splinting it to heal in the straight position.  I told him that I did not think it would work, and best to wait to see what happens with Xiaflex
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Hawk

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Re: the Doctors
« Reply #20 on: November 04, 2012, 11:46:22 PM »

I have not seen him in a while, but the last time I did, he was talking about an (hypothetical) experimental treatment of inducing a chemical erection, with anasthesia, then breaking the penis by force, and bandage/splinting it to heal in the straight position.  I told him that I did not think it would work, and best to wait to see what happens with Xiaflex.

I would tell him to lets hypothetically talk about doing that to his penis since the hypothetical about doing it to mine would make he want to hypothetically shoot him.   :o >:(
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ComeBacKid

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Re: the Doctors
« Reply #21 on: January 20, 2013, 02:28:00 PM »

Iseilinus,

You've got the VED you could try, pentox, and Auxilium should be up soon to try.  Your urologist sounds insane, most likely "breaking" it would lead to more scar tissue and bending, the VED can accomplish simple stretching very slowly over time to get size back, and help straigthen, why wouldn't you try that?  Run from that doctor as fast as possible!

Comebackid
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MattFoley

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Re: the Doctors
« Reply #22 on: January 20, 2013, 03:44:20 PM »

Trying to "break" Peyronie's is like trying to break a sponge. Yeah, right, give that a try.  >:(

I would agree with Hawk, except I would take out the "hypothetical" part. ;)

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Noway

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Re: the Doctors
« Reply #23 on: April 02, 2013, 04:10:11 AM »

Ive had really bad things happen with general urologists stay away.
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