Why is our condition so rarely acknowledged? (just looking to vent and discuss)

General Discussion
#1

Before starting the drug I saw two separate dermatologists in canada. Both hardly even mentioned symptoms, saying .5 percent of people with a history of mental or physical health issues can get the libido side effects but that its so rare its barely even worth mentioning. They also both didn’t even know what post finasteride syndrome was and swept it under the rug as being nothing or being from crazy hypochondriacs on the internet . Is this true? Is our condition really so insanely rare that most docs will never even encounter a case even after prescribing the medication for decades? Is there any doctors who are against the drug, maybe some endocrinologists might be?

How many men actually take this drug? Is it most men? Do like 99% just take it without thinking and never have any issues? Im guessing 99% of men in Hollywood or who work in front of a camera take the drug for example.

Do we know anything on if the drug is bad for the body in general? Are we just insane genetic outliers? Would you ever let your son take the drug?

Also what is with the crowds from hair loss forums trying to silence anyone who talks about the side effects or potentially negative health ramifications? They tear us down, say its all in our heads and we are crazy, etc. They get so defensive, it just feels weird. I hate when people say its all in my head but what do I know, maybe it is? It seems like so many men can just take it with no issue and im so envious.

Sorry for the stream of consciousness, anyone wanna offer any answers or opinions? Im looking to discuss while being trapped inside due to this corona virus stuff.

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#2

It’s not rare in my opinion, the majority of PFS cases don’t go documented at all. Doctors don’t care and if they did the drug would have been banned a long time ago.

True millions of OLDER men take finasteride for BPH then younger men treating hair loss, but I’m noticing some of those older men are finding their way on this forum, doctors will brush off low libido/ed fatigue and cognitive issues to those older patients due to there age when in fact the drug is what’s causing the issues, ask any of the men with BPH on this forum who took it and they will tell you they were very healthy prior to using Finasteride.

As for the hair loss forums those guys are in denial this condition exists and they know if the drug gets banned their hair will fall out lol, I find it comedic how they defend the drugs safety and they’ll tell you to go play in traffic if you tell them otherwise. To look back myself I was a dumb ass for trying to combat my hair loss it means nothing to me in comparison to the condition I’m in now. I guess these guys won’t believe in PFS unless it happens to them. There’s honestly no point in even warning people anymore without being attacked. Hopefully a few bright people can look at this forum and realize hair isn’t everything and worse things can happen.

I think we have to have some genetic predisposition, as it makes no sense why the majority of people that do get side effects get better after discontinuing the drug, that’s not to say this condition is rare though.

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#3

I think the reason we are palmed of as crazies is due to a few different reasons. Probably fairly rare (between 0-1% maybe 2%). Unusual presentation ie symptoms start after stopping and are very broad ranging. Symptoms can be easily be lumped in with psychological issues. For the most part indicators of persistent sides are not reported by clinical trial data likely due to either corruption or bias that doctors are unaware of. Finasteride was used for years in BPH patients without complaints of persistent sides for the most part (PFS may be more prevalent in younger individuals).

#4

The hair loss forum incels don’t like anyone talking badly about their precious pills. It reminds them that they’re playing Russian Roulette with their health and they don’t want to hear it. Makes them nervous. So they just write PFS off as people trying to cash in by suing Merck or it all being in their head/placebo effect and continue on popping their pills.

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#5

Doesn’t risk increase the longer you take the drug? Do we know if it does anything bad to the body even in those who dont experience noticeable side effects?

#6

Thanks yah ive noticed those communities seem quite toxic at times. Don’t millions of men take the drug and just go on about their lives with no side effects and without going on forums? Im guessing almost all celebrities take it.

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#7

I don’t think a certain amount of time using the drug means anything some guys get PFS from 1 pill others develop it years after using the drug. For some this condition is progressive even with short term use.

#8

The answer is simple: No scientific evidence. Until there is scientific evidence of something, it does not exist. That’s why the whole focus of this community should be on getting scientific study of our condition researched. We should be going to all PSSD, PAS, PFS, and sexual dysfunction communities to publicize our survey. We should be getting victim stories from men, women, and children, we should should be drawing positive attention to our problem as much as possible (mature and intelligent attention, not whining, nutty, conspiratorial victimhood sob stories but rather credible, sober, and serious outreach) and we should generally be focuses on advancing our interests not sitting and complaining.

#9

Actually we’re doin’ it and and for some time now, we’ll be very glad if you join pssdforum (www.pssdforum.org) to help us convince people to do the survey, it would be very important if someone from the PFS asked for it, it seems to me that some of you have already done it and we are grateful for it.

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#10

I am a member of pssd forum but it seems to always be down. Did it just come back online now? I have written there about the survey many times.

#11

Yes the site is back online (www.pssdforum.org), unfortunately for some reason we hasn’t been able yet to get a great number of people do the survey.

#12

Yeah there really need to be so much more pssd affected taking the survey. I’m frequently asking for it and it’s great that some did it but indeed many don’t seem to understand the value of this project

#13

People tend to keep sexual issues a secret, so the actual number of potential patients will be higher. Some patients even try to rationalize themselves. They try to deceive themselves, for example, as a disorder caused by age or tobacco.

#14

Yes that is why I think people in sexual dysfunction communities, or anorgasmia, or any other related communities should be informed about the possible relevance of these drugs. Imagine if you were a woman, for example, who couldn’t have any relationship or have any children etc because you thought you were just “frigid”, when in fact all that you needed to get your life back was someone to develop a cure for a condition you got from Accutane when you 14 years old or from an SSRI. Until those people learn about the potential cause of their problem and fill out the survey there isn’t going to be a cure.

#15

I don’t think you’re intending to be provocative with that statement but I can tell you that so dramatic and catastrophic has PFS affected multiple domains in my brain and body that the suggestion that any of it is imagined and psychosomatic is simply laughable. This is a devastating physiological disease and is recognised as such in published scientific literature

The occurrence of persistent adverse sexual, physical, neurological, and psychiatric side
effects after 5α-reductase inhibitor is well supported by the existing data.

This provides the first evidence of a molecular objective difference between patients with long-term adverse sexual effects after finasteride use

The medical community has an obligation not to turn a blind eye on this rare yet debilitating
condition in young men. Patients with this condition should not be stereotyped or stigmatized by
untrained and unprepared clinicians, due to lack of awareness and knowledge pertaining to this
new and rare syndrome.

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#16

Actually, it’s impressive how many PSSD and post-AD patients have taken the survey recently!

PAS patients on the other hand… It probably is time for another round of encouragement.

#17

Hi Dubya, yes i think it i because pssd forum was down for a while so people gathered here, this is very good i think, and maybe because we have tried to explain the importance of it…btw how’s going on where you are? Are you in the States?
Best

#18

I’m convinced I fucked myself with propecia by stopping and starting it. I was young. Probably didn’t even need propecia. I’d quit for a few weeks or so, thinking I’m not that bad… I’ll stretch the cost out. Not knowing I was playing a game of chicken. I’m certain if 100 users with no sides quit for 2 weeks and started for a month, then quit again. There’d be way more than 2-5% doomed.

…oh and I had a shitty dr appt today. Made me wonder how many suicides are caused not just by devastating symptoms, but, by doctors not giving a shit.

#19

Yeah, I noticed there were a few of you promoting the survey on the revamped PSSD forum too. Thanks!

If you’re asking how the virus situation is, it seems to be spotty. I guess that’s the nature of something like this. Very bad in certain areas according to news reports, and barely noticeable in others. I think the US avoided worst-case scenario by taking precautions beginning a couple weeks ago, but who knows how it will turn out. There had been at least 60 confirmed cases reported at the local hospital in my area as of a few days ago and I personally know someone who lost their sense of taste and smell and ended up testing positive.

Best to you too.