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Author Topic: I need some serious input here  (Read 435 times)

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Hawk

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I need some serious input here
« on: May 15, 2021, 10:21:29 PM »

I honestly need to understand why out of hundreds who log into this forum every day, 2 or 3 percent of those would not be willing to be moderators.  I can understand 97 percent just hoping the few older guys will do it all until we die, and it's not their problem but 100%??

What am I missing?  Please help me understand.  Many hands make the job easy but one or two doing all the post moving, trying to establish relationships with professionals, updating doctors lists, moderating is a lot of work.  Amazingly, most of the work on the forum is being done by people who actually don't even have penis issues, but they sacrifice those who still do have issues.  Is the concept of lending a helping hand just lost with the newer generation?  The interest in helping is the least I have seen in 16 years.

I want other perspectives on this and also ask what you would do in a similar situation if you were me.  Would you put your grandchildren, children, spouse, and life on hold in your last year's if others were not interested enough to jump in and push the work?  Would you personally put in more hours, or would you pull the plug?  What would you tell your family when they asked, "why do you do it?"

I am seriously interested in how others think because I no longer feel like I have a sense of what goes on in people's minds.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

NeoV

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Re: I need some serious input here
« Reply #1 on: May 15, 2021, 11:48:00 PM »

Hawk, over the last few years I've spoken to a lot of men on Skype and gotten to know them personally. The overwhelming consensus I get from them is that the forum depresses them due to the nature of the issue (not the forum's fault here). One man dreads opening the forum as it invokes panic attacks for him. I had to help him get into a mindful state first and actually take a deep breath and spend some time on here.
 
I have been having this issue myself lately, where I have to seriously consider whether to open the forum or not without re-traumatizing myself and actually causing my mind to refocus on my penis. Once you're 90% or more over the issue physically, the rest truly is in the mind. Penile and pelvic pain for example can be triggered merely by thinking about it at that point. My penis is different than when I was 18 despite being functionally and aesthetically cured, but if I open the forum, I seriously risk ruining my day unless I do some serious meditation and remind myself that the forum is to help others, not myself. I guess because we first come here for help, our brain wires that mindset in pretty hard.

I really consider Peyronie's to be one of the most traumatic things I man can realistically experience while being at the same time very prevalent among the population. I'm not saying it's justified or not justified, but it just is. Other than that, I suppose life gets in the way for a lot of men.

Hawk

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Re: I need some serious input here
« Reply #2 on: May 16, 2021, 12:09:34 AM »

NeoV, I appreciate the input.  Maybe I was not clear. 

There is no shortage of men who log on to the forum and participate.  Hundreds per day do so. Fifteen years ago, we had only a fraction of that but 3 times as many volunteering.  They helped in a range of capacities.  Men were taking the initiative to promote search engine rankings, build doctor lists, designing brochures to place in doctors' offices, contacting the NIH about the orphaned Disease status of Peyronies Disease, and much more.

So my question is not, why don't more men log in or why don't more post.  They do that in droves.  I need help understanding why men who are so motivated to use the forum have no motivation to help with the forum. Only those reading this can help me with that answer.

I just want to understand for my own education and personal growth.  And I want to know what they would do if they were in my position.  Work more hours, or pull the plug.  I am interested in how others think about such issues, and I ask that the members please share their insight on those issues,
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Benraycamp0

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Re: I need some serious input here
« Reply #3 on: May 16, 2021, 12:47:35 AM »

I second NeoV's point.

And to me, it answers your question Hawk. Coming onto the forum with the goal of helping ourselves through this condition is very different than committing to become apart of this Peyronie's Disease community. It's a pretty unique condition that is quite rare through the male population, so I am assuming it's just depressing to think you are part of this Peyronie's Disease community. You said it yourself (and let me know if I am mistaken), that the majority of work being done are by people without penis issues. That kind of proves the point doesn't it? Having the condition actually makes it harder and depressing to help. 

I'm honestly not surprised that you had surges of interest at certain points but it seems like the forum has struggled to find people who are consistent (again, let me know if I am mistaken). I am assuming that just means some people are more enthusiastic earlier on in the disease process and then drop off when they get to a place where they have to accept to live with their condition or they get a surgical solution and they want to stop thinking about this disease altogether.

Regarding your question about what I would do if I were in your shoes, that's a tough question to answer. But I'll bite and I hope I don't offend (I surely have no intention to).

Given that you've had enough passion to keep this going for the past 15+ years, I am assuming you still have that passion. I of course don't have all your financial, family, and other circumstances written out to judge you on, but I am guessing if I were 70 years old and retired and I am well aware that I built the single best Peyronie's resource in the world (it is), I would allocate a certain part of my day that I could manage to maintain the forums. It certainly wouldn't be perfect, but I'd patiently continue the search for moderators and do what I could within a certain limit to keep it going. Maybe I'd limit the scope of my work to purely maintainence (deleting spam posts, banning bad members, etc.) or whatever is necessary to just maintain (not grow) until new moderators came along.

That's my two cents, and again, I hope I didn't offend or sound judgmental. I really tried to think as if I was in your shoes (granted I am only 25 years old so take it with a grain of salt).

I do have a question for you though. If I were to press you on limiting your role to purely maintenance (no growth activities, no answering questions yourself), how many hours per day do you think you would have to invest? As you mentioned, we have plenty of people contributing so no reason for you to spend more of your time doing that.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Mikel7

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Re: I need some serious input here
« Reply #4 on: May 16, 2021, 07:02:33 AM »

  Is the concept of lending a helping hand just lost with the newer generation?  The interest in helping is the least I have seen in 16 years.

   Bingo.  This is one that I have observed  with this younger generation.  I am not cynical, but have raised 4 kids and have seen the mindset of our youth.  Some are lazy, want things there way,  have no respect for their elders,  focus is on me me me, don't want to work,  how many likes do I have on facebook,  etc...   Now I am not lumping all of them so if your young and reading this don't be offended.

   Helping out others and giving back is rooted in love and caring.  It does not count the cost of what is in it for me.   Hawk you started all of this from that very mindset and look at where it is today.  You have a difficult deciison as to it's future.  I recommend to move slowly in whatever you are contemplating.  Just my quick thoughts.  :)  Mike
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Old Man

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Re: I need some serious input here
« Reply #5 on: May 16, 2021, 03:27:25 PM »

Hawk:

I would like to add my cents to your plea for help with moderators on the main forum. Members, as I see it, just sort of panic when they realize that their most prized possession is life is their well penis not well anymore. I can understand that as you know I first contracted a medium case of Peyronies Disease at age 24. Since I am now 91 and been on another Peyronies Disease forum with you before initiating this one this gives me much insight, over 60 years. I know about Peyronies Disease and how to treat it than most urologists in practice today do in their practice.

However, as the only senior member left now, I would have very little expertise/physically left to handle the computer work due to the severe fault of DC. My hands are constantly failing more and more every day. But, I still receive and answer many hundreds of PMs per week. This keeps me somewhat busy answering them. Hope no member or moderator on the forum doubts my position. I sincerely wish that I had perfect control of my hands to control my typing. At one time in my life I was a secretary to 3 postal inspectors and typed 70 words per minute with an old standard model Remington machine.

Finally, I do wish that other members would come forward to assist all of the unknown moderators and members who work ''behind the scenes" of the main forum to help more.

I want to throw out my plea to ask them to do so to help out founder, Hawk, to be able to keep this forum alive and well.

Best regards to everyone.  Old Man
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Age 91. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction.
Many other surgeries in the last 10 years.

MauvaisCoton

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Re: I need some serious input here
« Reply #6 on: May 16, 2021, 03:51:08 PM »

Hi Hawk,

I can't speak for others but I can tell you more about my thought process. I've given a lot of thought about becoming a moderator, I even talked about it with my girlfriend earlier this week. But I don't feel like I'm in a place where I can help others.

I'm still very much worried about Peyronie's disease and I'm genuinely scared. I spent years doing nothing and it's only in the last few months that I've decided it was time to try and beat this disease, or at least overcome it and don't let it take over the rest of my life. But I still have a long way to go and I don't know if or how I could be of value to others. I'm trying by replying to some posts but becoming a moderator feels like a role I wouldn't be qualified for, or at least not yet. Does that make sense?

It also doesn't help that English is not my first language.
Logged
29. Congenital curvature upward. Diagnosed with Peyronie's in 2017. Curve approx. 45° to the left and near the base of the shaft.
Mild Erectile Dysfunction since summer 2020. I take Cialis on demand.
Currently using RestoreX (since 04/21).

TDix

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Re: I need some serious input here
« Reply #7 on: May 16, 2021, 03:57:37 PM »

Hawk, I do all I can to educate and “pay it forward”.  If you need help, all you needed to do was ask!  I am willing to help however I can.  I have become a patient educator, I do any media commitments Dr Yafi wants me to do, and I do it all while also balancing a full time job and family.  I visit your site religiously even though technically I’ve fixed myself.  I visit to help others, and if I could do that full time, I would do it in a heartbeat.  Anything you need from me to ease the pain or pressure, I got you.
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Hawk

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Re: I need some serious input here
« Reply #8 on: May 16, 2021, 06:22:19 PM »

I appreciate the feedback because it helps me understand our current membership's point of view. I can, of course, tell how many members read my posts.  When 450 members see my plea for moderators and never even say "drop dead," it just adds insult to injury.

Tdix I deeply appreciate your offer.  Have you seen my previous posts asking for help?

Old Man My dear friend.  None of this applies to you.  You did your service.  This is for the next generation to decide what they are going to do.

To BenRaycamp  The fact that most of the work is currently being done by those no longer struggling with penis issues does NOT prove your point. I was here strapped in traction often while I worked on the forum.  I was using VED's, sticking needles in my penis, taking prescription drugs and supplements, researching, and sharing with little improvement.  Often getting gradually worse. Remember, I struggled here for over a decade with penis issues while working on building this from scratch, so I am pretty qualified to know how it feels to come here while facing penis issues. In the midst of that, I was fighting a battle with aggressive prostate cancer and often presumed I would be dead by now.  No one can instruct me in what it is like to make and keep commitments to others in the midst of personal challenges.  If the men suffering from this disease cannot step up to the fight, who will fight this battle for them?  If you won't run a forum to inform your brothers, who will? That is the very reason breast cancer research is 15 years ahead of prostate cancer.  Men climb in the backseat for a ride when it comes to their own health care.

To Mikel7 I don't want to think it is generational, but I am almost prone to agree.  LWillisJr volunteers here and has for well over a decade because he is that kind of guy.  He also volunteers at his church in several capacities because he was raised to give back.  We had a younger member who almost got muted for asking the same questions day after day and whining at the answers until it was an utter distraction.  It went on for years. Finally, we got him to get an implant, he posted about 4 or 5 times, and he was gone as soon as his problem was fixed.  No journal, no doing for others what was done for him.  So the examples of suffering men serving are plenty, and the examples of men fixing their issues and leaving are plenty.  A lack of giving back is not about the condition of your penis.  It is about the condition of your heart and your values.

I could just moderate and not use time commenting on the forum. There are two reasons I won't do that.  The measure of the value of this forum is its worth to others.  Lip service is not enough.  If it is not valued enough that others will invest in caring for it, then it is beneath me and not worth my time either.  I do not consider it a plan to work my butt off moderating a forum for those who show by their actions they do not value it. What is the point in me spending my last years propping up something that will die with me?  If this is bound to die in the next few years, there definitely is no point in devoting my last years to maintain it.  It would be far wiser to pull the plug now.  For me to continue this, there has to be a generation committed to carrying it on, or every minute I spend here is a wasted minute I could spend on other precious things.  I am NOT asking for help with my forum.  I am asking you if you want my help with your forum.

The second reason I will not just moderate for 20,000 members and 60,000 guests is that my posts are moderating. The truth is that if I and a few others did not post and counter everything from superstition to deliberate lies like I had to expose on the implant board several weeks ago, this forum would decline into a mess of worthless dribble.  Rather than do that, I would lock all the boards from posting and keep only the Erectile Dysfunction boards open. They are the most organized, best documented, most scientifically sound section of the forum.  With the other boards locked, I could organize them at my leisure and just keep them here as a read-only information source.  I would eventually lock the entire forum and leave it here to read until it faded into oblivion. 

The real alternative - Before this forum, life for a man with Peyronies Disease was hell.  Doctors would not give you any information.  Peyronies Disease Forums on the internet literally laughed at your issues, offered to service your wife for you, and encouraged members to commit suicide, OR they were run by a doctor who would not let you hint at anything they personally did not sanction.  It was sanitized control over all Peyronies Disease conversations.  This forum shut those forums down within a year.  Old Man can vouch for every word of that.   When this forum and its 150,000 posts are gone, you will realize the loss.  If you cannot maintain a forum that is already set up and established for you, then you really don't want a forum, and you don't deserve a forum.

Your forum, not mine[ - Members established the forum rules by vote.  I have to live by them like everyone else.  Members have disagreed with me, accused me of being a shill for some imagined marketing, wished me dead. If we were ever set up as my forum, many would have been kicked to the curb far faster.  I manage this forum for the members free of charge, actually at the expense of those of us who work for you.  I volunteer for you.  If the members don't care enough for their own forum, then why would I do them the favor of paying the bills and working for them?

My generation saw the value of a forum and did the work to have a forum.  Will your's?



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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

TDix

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Re: I need some serious input here
« Reply #9 on: May 16, 2021, 06:37:08 PM »

Hawk, your contribution is immeasurable, as are other members here.  If apologize if I didn’t see your post reaching out.  I mainly check in the sub forums I have posted in.  Whatever you need my man
Logged
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Stabler

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Re: I need some serious input here
« Reply #10 on: May 16, 2021, 07:02:14 PM »

I think it’s important here to point out that to be a moderator doesn’t mean your need to be an expert in Peyronies. It simply means helping members ( like your doing now) understand Peyronies, answer questions etc... It means helping members learn HOW to post how to NOT quote and entire post when replying. Helping members learn how to be active with the forum. Many times, even though members are sent a PM that has forum rules, they don’t read them or maybe understand them. Help them learn the rules to help the forum run smoothly. None of us are experts, we just do what we can.

Stabler
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Hawk

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Re: I need some serious input here
« Reply #11 on: May 16, 2021, 07:30:23 PM »

MauvaisCoton, I wanted to address you separately.  I understand and appreciate your concerns. You are fairly new on the forum and just starting to post.  Once you get settled in, please consider it in 2 or 3 months.  By the way, your English looks perfect.  We have had other moderators who had English as a second language.  One of the best, most dedicated moderators we ever had was James, who struggled with English.  It was a great loss when he left after many years of service.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: I need some serious input here
« Reply #12 on: May 16, 2021, 07:52:02 PM »

TDix, I sent you a PM
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Kobegianna

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Re: I need some serious input here
« Reply #13 on: May 16, 2021, 09:41:02 PM »

I am scared, depressed , angry. But I truly appreciate your work. How can I help?
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Winter

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Re: I need some serious input here
« Reply #14 on: May 31, 2021, 02:27:42 AM »

Hello, Hawk. First of all, I would like to thank you and the other moderators for all the effort and noble work done.
This forum was one of the most important sites I have ever visited in my entire digital existence.

As MauvaisCoton said, I've given a lot of thought about becoming a moderator too.
I just don't think it could provide enough time and emotional stability as I should for the task right now. Furthermore, I am also not sure about the language issue.

I fully understand the point of NeoV. Most of the guys I see facing this condition more rationally are the ones who already have an implant.
We, who are still trying to overcome this alternatively, are often emotionally and psychologically unbalanced. But I feel a little selfish and ungrateful for not being up to the task.
Perhaps in the future, when life becomes a little more stable.

But I suggest that you open the forum for financial donations, in the same way that wikipedia does. Even small contributions. It would not only be fair with the amount of effort and time you provide to us, but it could also help support the entire structure for which you are paying for. I would definitely donate immediately, even though my country's exchange rates are highly unfavorable to significant amounts.

Logged
39 yo, married Onset on 06/2020
Hourglassing when semi-erect, few indentations. Small upwards curvature
No erectile dysfunction. It still hurts sometimes;
Taking pentox, Cialis, Q10, and Hirudoid daily;
Trying keto diet with good results.
God bless
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