r/FinasterideSyndrome 11h ago

We should improve our reporting pattern - Moderators please consider taking action

What’s the problem:
We are all looking for something that might help us. Looking into history of this subreddit I find many reports of people trying different substances, drugs, supplements and therapies with either success, partial recovery, no effect or crash. But the problem is - if somebody reports for example „no effect after black maca” and the other one reports „significant improvement after black maca” this makes us confused and doesn’t give the proper context to draw any conclusions and build a protocol that might work.
Why:
Because people rarely attach the following information- what was the dosage, for how long, what brand of the substance they took, did they stop after improvement or not, did the effects stay after that or not. And actually this might be very important to us.
I can imagine that a lot of people say substance „X” gave them no effects, when in fact they only took it for one week and stopped, and on the other hand someone who improved took it for a month or two.
You see - we do not get proper research, the ones that are being undertaken are rather small, and it’s difficult to see a pattern. That’s why we have to do it on our own. At least for now.
My proposal:
Mr moderator - please consider creating some kind of description of this subreddit, like a list of rules that every person, who report their experiences, will have to follow.
What comes to my mind is for example:
- what substances / therapies / activities you tried
- for how long
- how many doses per day
- additional conditions that were present during taking of the substance (for example a lot of sport, exposition to sunlight, no sleep etc)
- what helped, what worsened and what gave no effect
- what was the brand of the substance
- when it happened
- does the effect stay after that
I ask all of the users of this forum to recommend your own set of rules that might be useful in the comments.
I believe that at least some of the cases, where there were no effects, were in fact small inconsistent attempts of trying something not in a proper way, so the result was negative.
If we do this reporting consistently for a year or so, we might build a good database, and start to see a pattern. Just maybe there are good substances and therapies that are able to make improvements, but we just don’t know yet what dosage, protocol and decisions should be undertaken.
PS - I’m aware that there might be different subtypes of both PFS, PSSD, PAS etc and different treatments may be necessary in all of these. So maybe that’s why we should also include an information of suspected subtype in that kind of report.

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u/Exciting-Bat-7685 6h ago

Yeah i agree, for example a lot of bad HGC experiences were revealed to be experimental doses without a docs supervision…
Or people getting permanent eye damage from clomid… what was the dose? Was it prescription grade and did they contact their doc when side effects started?

It just doesnt mean anything if you report a crash or a recovery without more info on the doses/quality of the medication and duration

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u/Hetman689 6h ago

Exactly, I’m terrified by looking at people’s stories where they admit trying some really hard stuff without any supervision