@vkg1 fully agree, I believe fin can bring on other conditions some of which can be temporary
mind boggling negativity, I can assure you that you will never recover to any degree with that attitude
Also a tad arrogant to suggest that those who have recovered did not have the condition, particularly when one of the biggest issues this community has had is getting doctors to recognise our condition. What hope do we have if fellow members have a similar attitude
I have personally spoken to numerous people that have had full blown pfs and recovered
Personally I took finasteride for 5 years, while not cured, I have gone from being an impotent eunuch in the first year to a stage where I am somewhat functioning. Ive also had periods of full recovery, nothing is broken
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@eskimojoe, I’m with you in that I can relate to the recoveries you have experienced. I’ve posted “nothing is broken” many times! I’m glad to hear that we have both had that positive experience. I also believe that the majority of people can expect to see improvement with time. I know @Dubya_B has written about his own improvements many times.
Your take that it’s negative here is probably something we need to speak about. A few people here say the same and I wonder if you could expand on your perspective on that. I won’t write anymore on it because I really want to get it right. Can you tell me what a more positive version of here might look like?
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thanks @Greek
My personal view is that if our mindset is “we are permanently broken, there have been no recoveries, any recoveries didnt have pfs, our lives our over” then we are all screwed and I have no doubt that none of us will ever get better
I was like this for a while but now my mindset is
“I have a condition, Im not going to let it define me, there are things that can treat symptoms of this condition (cialis, trib, tongkat, arginine etc) and Im going to use these to live as normal a life as possible. Im not going to dwell on it, and I remain hopeful that things will improve further over time”
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Excellent attitude Eskimo!
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It’s certainly a good thing that you’re in a positive mindset and willing to live happily in spite of your condition, but the idea that acknowledging the flaws in the current thought process of the community is a hinderance and is going to prevent you from recovering is fallacy.
Nobody is saying “we’re all screwed, nobody is getting better”. Just because we’re telling you that a “natural” recovery or a recovery involving supplements is highly, highly unlikely it doesn’t mean to say nobody is ever getting better. We’re just saying that the most promising route to improvement is via thorough scientific research and the sooner everybody accepts that the faster things will move.
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Complete and utter tosh.
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I agree with you too .
I’m finally reaching periods of improvement that have been the best so far , it takes a while and sometimes it’s time , other times it takes that positive mindset to push you through the shitty times
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You are a breath of fresh air my friend! I truly believe that positivity is a force of progress and good, and negativity is a force of destruction and evil.
While there’s no cure for our predicament, there are many steps we can take to improve our situation and make life worth living.
A year ago I hit snooze 5x every day as I didn’t have the will to get out of bed. For the last few months I have been getting out of bed before the sunrise and then I go walking or running. At first I did this in an extremely depressed state, but consistency has made it easier an easier and my mornings are more livable each day.
My penis is still numb, no morning wood, low libido (although there are periods of normal libido), but I’m focusing on what I can control at the moment (my existing sides are mostly sexual, but others such as sleep and mood have improved).
Adding Cialis and arginine may help me achieve erections, so that’s another step forward. Meditation improves every aspect of the mind, so that’s another step. Things have been and will be far from perfect, but they are sure as hell better then they used to be.
We should all keep moving forward indefinitely… Sometimes you’re dealt a bad hand in life, but it’s up to you to choose how you play it.
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There is a cure to our predicament. We just haven’t facilitated getting the people with necessary background, expertise, and experience to discover it yet. Instead, in our ignorant underestimation of the challenge, we’ve been sitting here trying to be doctors, geneticists, and medical experts ourselves, which is preposterous, certainly after 15 years of failure.
Pretty sure my outlook is the optimistic one – we have the capacity to get organised and advocate for a cure to our condition. We just have to start. Once we do, a whole new world opens up.
The pessimist’s view is that the best we can do is only what we’ve been doing without positive outcome for 15 years – tragically beating head against wall with self-administered TRT/Tribulus/hCG/Clomid/Welbutrin/Proviron (TTHCWP), often times making ourselves worse, and watching other members of the community die.
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Thanks @eskimojoe,
I agree with @orthogs that that is an excellent attitude.
I think that what @Dubya_B wrote doesn’t contradict or go against most of what you’re saying. If I can put words into his mouth, what we’re talking about is not that people don’t improve and not that some symptoms can’t be dealt with through the use of various medications, as you say.
Nobody wants the forum to not be able to deal with their symptoms and frankly, if we could all take a tablet a day that dealt with all our symptoms we’d all breathe a sigh of relief. There’s clearly a problem in how this has been communicated and I’m glad that we can talk about this.
I don’t think anyone is criticising your approach, basically that you have found a way to deal with your symptoms and you’re now trying to live the best life that you can. More power to you.
The problems may arise if you found that you couldn’t manage your symptoms. What happens of cialis doesn’t work for you? What then? Some people on the forum would tell you to try any number of treatments which may or may not be effective and may or may not be harmful.
If I know (and I do on some occasions) that a treatment has worsened someone, should I keep it to myself? I obviously need to say something. This is one of the things that is frequently suggested is a negative outlook. I struggle with how people can see that. I definitely want someone watching my back if I’m making risky decisions. Is that what you mean by negativity?
I think part of the problem is that there is SO MUCH bad advice handed out here that the moderators have to near constantly say either “be careful we know this can he harmful” or “this is an opinion which doesn’t have any record of success”.
I agree that some positivity and hope is welcome but it’s perhaps something the community at large could play a part in.
One of the things I posted a while back was that I wanted people who have improved to share their experiences, and not just stop posting. I think that is what happens a lot of the time as noted above. I hope that people can feel more of a sense of community, empathy and responsibility to each other here.
Be the change that you want to see. If you think it’s a pit of negativity here. Post something positive. But do it responsibly. Saying “I know you’re in a rough spot, it got better for me” is helpful. Saying “I heard some guy bought some chemotherapy drugs and that helped him out” is the kind of thing that is obviously fraught with danger, and we have to intervene and say something.
Does that change anything for you in how you may perceive things?
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Just as a quick example, here’s how things could start:
An admin could temporarily assume leadership responsibilities by crafting a Gantt chart full of tasks and reasonable timeframe for each. One item might be getting 20 more PAS survey responders, another might be getting 20 more PSSD responders, and another 50 PFS responders. A fourth row/item might be finding a volunteer with video production experience to lead video project. Then 5 people with PFS, PSSD, and PAS each could be found to participate in a mini-documentary (e.g., 10 minute video on our problem and how it affects the lives of those around us) as another rows 6, 7, 8 in the chart. Then two family members of victims could also be found, such as ex-wives, children, mothers, etc. A quality video would let the world know we exist and that our issue matters.
A tenth item might be finding a community organiser. Such a person might be paid $50 an hour to work 50 hours a month, paid for by 50 guys here committing to contribute $50 a month via Paypal subscription, and ideally be chosen by someone like Awor for their background and expertise in relevant science for planning and directing community scientific efforts going forward. Etc.
A member of the community would take responsibility for each item on Gantt chart and we start ticking things off. Results coming in would lift moods. With a video and actually demonstrated productivity, the community would start to come across as something to be taken seriously rather than as bunch of probable wingnuts and drug company conspiracy theorists who haven’t accomplished anything but injuring themselves popping misc pills for 15 years. In turn, outside contributors could be engaged with greater success, enabling better finances and more hiring toward scientific efforts. And so on. That’s how things get done – people getting off ass and capitalising on snowball effect. The items I described above would only require exactly 10 people doing just one task each.
These are the kinds of things we should be talking about. Not what $200 bottle of “libido boosting” herb we think might not make people crash, what we think our hormone levels are based on how we feel today, and latest pet theories rooted in Biology 101 level medical knowledge.
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I think this is a positive thing to be talking about @vkg1. Are you volunteering to help out? We’d love to have a few more people helping out.
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Obviously
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Are you even enjoy your life with this disease? Seriously what are you hoping for to happen? Donating our money and sit on our ass for 10 years and wait for a stupid study to shed some light to our situatuion? (It is good to donate money to studies, if you have money do that. Fine.)
How many protocols, diets, drugs and treatments have you tried so far Greek? I tell you what, you will never recover with this state of mind.
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TLDR; we aren’t permanently broken but trying random protocols shouldn’t be a priority
I used to be on the side of trying protocols thinking they will help
I had zero effects
I witnessed some get better
And many get worse
Do I believe some people recovered or got better? Yes but it’s hard to know how much we protocol helped
When you try a protocol you are playing Russia roulette
That being said I understand why people try them
But one thing I’ve changed my mind on is the idea that people who recovered just left without a word
I think people moved on to deal with the cards they were dealt with
If they got better and left, I would assume they would at least make 1 post
Like that on guy who supposedly got better from the antivirals
He told us
And then he left for good
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I look forward to your recovery story.
Update: I apologise for this sarcastic response.
Best of luck with your experiment.
By the way, at no point in this topic have I said that people should donate to the foundation. I’m not saying they shouldn’t, either. People who have tried to score points against me have said that’s what I have said.
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Nobody is taking anyone’s TRT/Tribulus/hCG/Clomid/Welbutrin/Proviron away from them. I don’t get where the animus is coming from. Do we want to get cured or not? Why would someone ever object to the idea of advocating for recognition of our condition and for commissioning experts to find a treatment?
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At a guess, lots of people have a lot invested in the idea that they can fix themselves with supplements. The lack of evidence for their success has to be put to one side, and that ends up being the symbol of hope they hold onto. That’s why some people can’t be civil, they’re putting reality to one side because it’s scary to think that there’s no easy fix.
I think it’s scary too. That’s why I hope that people will start thinking about alternative courses of action.
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I don’t personally have the time or energy, but why not first set up a slack for this.