Frustrated, a brief email or online survey link is different than Irwig’s study which issued qualifying criteria and then required filling out long forms. It may generate very little response or useful data, or maybe we get a couple of interesting anecdotes. Point is: let’s try.
It’s precisely because our data pool is so small to begin with, and because I’ve been living with this nightmare for 5 years and see the likelihood of an obvious miracle cure in my lifetime being so low, that I do not want to throw out the little data that we have. Before I quit, I want to at least make sure we tried to solicit as much info as possible.
A handful of long-term sufferers slowly, through much agony, trial and error, and expensive and painful means recovering or managing symptoms does not discredit the persistence/seeming permanence of PFS whatsoever. If we get a few cases who responded to TRT, it’s not defensible that we took a drug that royally screwed up our hormones and “all” that is needed is elaborate hormone replacement that .05% of the persistent sufferers respond to. Even if a decent number of registered members ended up healing in 3 or 6 or 9 months, that does not change anything: we already know the persistent sufferers are in the minority, but are still real humans experiencing real suffering.
For a certain as yet undetermined % of finasteride users, side effects don’t go away and the patient is left to become his own doctor/scientist. The very fact that we’d even need to issue a survey highlights this. Put your health and hopes first, and stop trying to worry about “how this might look.”
You NEVER know what you might find if you just ask…and get out of the way.