Thanks for posting this, it was an inspiration for me. I was on propecia for 8 and 1/2 years. I took it from 18 to 26, and quit this January. It seems, based on what I've found on the internet, that these effects hurt younger guys more than older ones. Unfortunately I don't think there are any studies that can back that up yet, but its been my impression from what I've read. After a month, I had a "crash" and I started looking around the internet for a reason why. I found propeciahelp, which is terrifying. I couldn't get any erections for two weeks. Since then, I have avoided propeciahelp and any other sites, including this one, to just try to mellow out and avoid overthinking everything. I was also dealing with getting IBS - irritable bowel syndrome, which is its own set of issues, and was in law school, dating a girl long distance, and had transferred to a closer school to be with the girl. IBS, pfs, and the distance lead to the end of that girl, and I was a wreck. I am sure that the crash was propecia though. The relationship ended 7 months before I crashed. But I have had slow, steady improvements since about a month and a half after going off propecia.
I quit propecia because I was having trouble with sensitivity, which I finally linked to propecia. I had been actively not aware of the side effects, I dismissed them along time ago as bullshit, which was stupid. Unfortunately I already lost my girlfriend, who I moved across the coutnry for. But I think it was a very gradual loss of sensitivity. After quitting, I felt great for 2 weeks (typical), then crashed about a month out, and had no erections, and ball ache for 2 weeks. The erections came back, but were weaker, and sensitivity was not great. I also had watery semen.
Now, about 5 1/2 months off propecia, I feel better, but i'm not quite all the way back. my sensitivity continues to improve, and i can always get erections, and sex is pretty pleasurable with my new girlfriend. the ball ache has been gone for the last two weeks. it seems to pop up during stress, if that makes any sense, and sometimes after i drink coffee.
I also saw a few doctors. my old dermatologist: useless, just said that yes, there does seem to be some longterm side effects now. A general practitioner who I got T testing from: my T was normal, but barely, and this varies on low depending on what you believe on the internet. And I saw a urologist to make sure my prostate and balls were okay. (they are). The urologist was the best, he was calming, and said that he thought within a year it would work itself out of my system.
Ok, so recovery
Sensitivity: much better, though not all the way back. maybe a 6/10? but I was at like 1/10, and it continues to improve. confident that this will continue to come back. regular sex helps.
Ball ache: continues to go away, nothing for two weeks. was reassured by visit to urologist who assured me i have no prostate / testicular problems.
Mind: I think I am more focused than I was. I felt lathargic / lazy / tired alot when on propecia the last couple of years, but i hesitate to put that all on propecia. Law school is long and tedious, so its probably a bit of both.
Sleeping: for about 2 1/2 months after propecia, this was the worst. I would wake up at 3am wide awake, with crazy anxiety. This has gone away, thank god, after 2 1/2 months.
Body composition: I've lost ass fat, and have a bit more muscle definition. I've been working out with a trainer for about a year and a half, and my high reps have gone up since going off the drug. But I still have some chest fat, not optimistic it will go away, from what i've read and what the doctors say. I was never fat, the chest fat is definitetly from propecia and not from being fat before. I can bench 225, and I'm 6-2, 195, but its still there. Its not ideal, but if that ends up being the worst of it, I'll be okay.
What I do / what I think helps.
Weightlifting helps ball ache. Especially heavy stuff: any kind of bench press, squats of any kind, deadlifts, leg press, preacher curls, bent over rows. I also run, but its mostly to clear my head and stay calm. Sleeping is good, once I got past the 2 1/2 months where I would wake up at 3am. Having sex and jacking off seems to be okay. Its not at the level I was at at 18 / 19, but its fine. There are times I can go 3 or 4 times a day.
Diet: keep in mind this includes stuff to help with IBS. I started with lots of fish, for protein, for weightlifting. I've slowly added in chicken and red meat. Certain really processed meats aren't good for me: hot dogs, deli meats. I take a multivitamin with iron, and a fish oil supplement, but my doctor says salmon 2x a week is just as good as the fish oil. I also take a small (1 tsp) scoop of metamucil fiber once a day.
For testosterone, I went with red meat in moderation, as well as pomagranate juice (not that bad), and the iron multivitamin. I really don't want to get into any more drugs if I can help it, because I don't want to introduce any more unknown variables than I can help.
So anyways, best of luck to anyone else out there dealing with this shit. I personally am avoiding testosterone therapy or drugs beyond a vitamin, but i don't begrudge anyone who goes that route. I've found success in some form with weights, sleep, time, and trying to not think about it.
I read this somewhere, not sure if it was here or on bodybuilding.com in a forum relating to propecia: The human body is a f-ing machine, it wants to work. Given the right fuel, and the time to adjust, it will correct itself.
I don't know how true that is, but I've taken it as an inspiration. Best of luck to everyone. I won't be back on here for at least a while, its best for my mindset to avoid these kind of sites. Once you form a plan to deal with this, I suggest you also withdraw from reading about it, and give your body time to recover as well. But I thought it was important to post something that works, because I don't think the doctors know much about post finesterade syndrome, and they seem hesitant to suggest anything without an official study coming out.