That’s not true. We have nothing to lose, they don’t. We’re suicidal, they’re not.
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There’s plenty of research and awareness building initiatives in the community
If you truly have nothing to lose then you should channel all that energy in 10x’ing our efforts instead of placing it in some naive plan
Most sufferers in “the community” either don’t know, understand, appreciate, or care about any scientific research. Their lives have been irreparably damaged. Many made the decision to die.
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You’re talking to me like I don’t have life changing symptoms
Pharmaceutical companies have no interest in this study coming out. It is difficult and expensive to conduct independent studies.
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It’s ideas like that that would explain the lack of transparency. Waiting for the medical journal… and that’s it?? There has to more to that, so what else??? Questions we or someone who is controlling this narrative can find out. I think at this point we have a right to know. There’s no more waiting.
For governments describing finasteride to young men (its even only for cosmetics) can be very costly for society. They should ban it immediatly for cosmetic purpose. Too much risks involved…
Totally offset by the revenue, taxes, share valuation. Even so much admitting we suffered from this god awful drug and the FDA’s shitty regulatory practices might hurt share prices. (I 100% guarantee many of the people in the institutions we defer to for help have shares in Merck or other Pharmaceutical companies.)
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You are going about things all wrong. That people have researched our condition at all has been a gift that we owe thanks for. Meanwhile, we have done jack shit, you have probably done jack shit, to organize the community, form bonds with PSSD and PAS groups, assemble advocacy efforts, and generally get the word out. No one owes us anything. You don’t look a gift horse in the mouth. You don’t pester people who are helping you. You should be furious at our own “community” for doing nothing but popping pills for the last 15 years and thankful to researchers who have put their time and money into helping us out. Going and alienating or acting crazy in front of them is the polar opposite of productive.
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You’re passing blame for the wrong reasons, we’ve all gone to doctors and spent thousands to have them turn their backs on us, the last resort was to try to self medicate. If anything the fact that we all tried is why we know we need outside help and that we can’t take on big pharma without the help of an organization , an organization that the community has helped fund.
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Is this penile abnormalities due to lack of AR or AR ‘‘overexpression’’ due to PFS?
Do we really all have epigenetic damage/ change on our penis skin? So this probably means the minute i got PAS, my pubertal and penile development stopped early…
Because receptors were not working properly?
Can someone please explain me as if explaining to a bird? I would be glad.
I agree, I would like the whole AR aspect of this explained in laymen’s terms.
On a positive note people who do the carnivore diet supposedly reverse epigenetic damage which might be why Ozeph got better and so did that guy Josh Abrhams who did an anti inflammatory diet.
I’m also cautiously optimistic that once you recover, your penis size will grow to where it would be had you never taken the drug. Can’t guarantee that but it makes sense that flooding the penis with hormones would make it grow. Thats why it grows during puberty
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I don’t like to bring any bad news or so. But if you check my latest thread. Called Epigenetic explanation of PAS.
The guy there i talked with said that the epigenetic markers and genes “moves on” with age.
So if there was any “penis size development gene” on that tissue. Even if we fix the epigenetics and receptors, it is unlikely that it will start to hit a second puberty because years passed.
But he also said, it is possible. If Accutane only caused AR insensivity and your penis supposed to develop at that “crucial time” when you took Accutane.
So if that was the issue, fixing the insensivity should grow our penis above pre- pas. If those epigenetic markers during puberty time are still waiting there.
Damn, they must be bored to death, waiting this much, lol.
Again, no one owes us anything. The reason doctors can’t help us is that the research isn’t there. Until we get the research going, it’s OUR fault that doctors can’t help us. Doctors don’t owe us anything. This kind of victim mentality consigns us to hopeless lives when there has been a simple solution all along — get the research done to explain what PFS is. Until the research gets done, no one will ever be able to help us and anger over that is counterproductive. As soon as they know what PFS is, doctors will be able to do all kinds of things to help us.
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If worst comes to worst or you feel like you have a small penis your should check out a bathmate penis pump. supposedly can grow your penis 2 inches on avg. no idea if thats false advertising but my goal is to optimize recovery opportunity and then take care of penis size after. I bought a pump just haven’t used it much.
Also I trust zero doctors on their opinions about this. This shit is way out of any of their leagues. At least any doctor I’ve seen hasn’t been of help. And I saw Irwig and Dr. Bhasin and all the advice I got was to “hang in there.” So I wouldn’t put literally any stock into what that doctor said about penis size. If the person who said it wasn’t a doctor I’d put even less stock behind it. No one knows about this shit
There’s no point in being angry at doctors. Doctors are like car mechanics for the human body. They read the shop manual for car and issue repairs according to the guidance contained. Without a “manual” (ie research) they’re just as lost as any of the rest of us. Thinking doctors are supposed to be able to make a repair that doesn’t even exist according to current research is a misapprehension of their function. It’s on us to enable doctors to treat us. We are the ones who claim to have a disease that no one has proven exists.
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You act like once the research is done, a cure will be found. There are countless chronic conditions that have been acknowledged for decades and researched extensively, where noone is even close to understanding the etiology, let alone finding a cure. Im not saying that the community shouldnt be more proactive, just saying that youre putting all this hope into something that eventually might never lead to what youre expecting.
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Omfg no cure?
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Not clear what the point is. Are you saying that you think the current approach is good and that we should all just die, because it’s easier, with no clue what PFS was except for that it made our times on earth all tragedies?
Dont twist my words, I never said that. What Im saying is that theres no gurantee that research will ever lead to a cure. Again, that doesnt mean we shouldnt be proactive and work towards understanding this condition. But I see you constantly criticizing victims that are trying different substances to improve their quality of life in the meantime. Maybe you are fine with waiting for x amount of years for research to MAYBE give us an understanding of this condition and then another x amount of years to MAYBE have some kind of treatment for it. Not everyone is willing to waste years on end anticipating something that might never happen.
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My take is we should all be doing something to push forward the research. Even a small monthly donation or tweeting about it can go a long way.
Vast majority probably haven’t even made a single donation to the foundation which is pretty sad when you think about the thousands they’ve spent on various supplements.
Obviously we all want to see instant results though so we’re all going to keep trying random treatments in the mean time.
You can do both. A lot of us have tried lots of supplements and have probably realized that research is our only way out of this.
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