I just stumbled onto this site today, and had quite a freak out, as I’m sure many people have had before and posted something similar to this in that they’re asking for your help in identifying their symptoms.
Before I start though I see that you have a survey for symptoms, but I just wanted to get your opinions first and if you think it is PFS related I will fill it out. I must say too that I’m impressed with the level of community and organisation you have here in the face of such a terrible illness.
Now a bit about me:
I took finasteride in March 2015 at 23yo, along with saw palmetto. I took them both for about a week, maybe a little bit longer, I honestly can’t remember the exact length of time or dosage. I did experience a small amount of breast pain while taking them, however I stopped predominantly because of all the horror stories I was reading online about sexual side effects. I have always been an anxious person and my anxiety wasn’t willing to risk it. Had I known it could cause all the other symptoms everyone here has faced I absolutely wouldn’t have taken it in the first place. I particularly wasn’t willing to risk the erectile dysfunction from it at the time because I had had issues with that in the past when I was a teenager, but that was purely anxiety driven, I wasn’t taking any medication at all, it was simply that I would get so anxious about being not very good in bed that I wouldn’t be able to get it up. Once I learned to control my anxiety better, and also once I started to have long term partners it wasn’t an issue at all, and I have had full erections pretty well every time right up until this day.
Now the reason my story is a bit convoluted and confusing is that after I stopped finasteride I didn’t have any sexual side effects whatsoever. I actually didn’t have any negative effects at all for 1.5 more years, and I didn’t give finasteride much thought again at all until today.
If you’re now wondering why the hell I’m even writing this I hear you, however in early 2017 I experienced the most rapid and worst cognitive and mental experience of my life. I ticked every single box for what I now see are the neurological effects of PFS, I was cognitively destroyed, constantly brain fogged, couldn’t string sentences together properly, outrageously anxious and depressed, and the worst of all I was paradoxically completely emotionless throughout it all. I also experience debilitating gastrointestinal symptoms, as well as joint pain, tinnitus etc. For a long time I was at a loss as to why this happened at all, I mean I was smoking a bit too much weed at the time and kind of put it down to a bad reaction to weed, but then I came across a bluelight forum on MDMA long term comedowns (LTC). Like this site it identified a wide range of symptoms that a small subset of people who take MDMA (but still thousands of people) can experience for years after even just one dose of MDMA. I had taken MDMA for the first time of my life just weeks before everything started for me in early 2017. It was the mystery diagnosis I’d been looking for, and all my symptoms were covered under the LTC. Although there was no cure apart from time (if you’re lucky) and living as much of a stress free lifestyle as possible, I was relieved to have some answers. I committed then and there to a life of complete dedication to my health and did every practice and supplement under the sun to get better, along with complete abstinence from all drugs and alcohol.
My cognitive symptoms have greatly improved since this time, and my depression has gone, however I still have the same complete emotional blunting (anhedonia) and my anxiety is for the most part always there. My tinnitus, joint and gut issues are too. I have been meditating every day and have always retained hope that I will be completely cured one day. However today I found myself looking into Milk Thistle for some raised liver enzymes that I have, and I came across this website and a thread about people who have PFS and have had bad reactions to Milk Thistle. I had taken Milk Thistle in late 2017 and I don’t think it exacerbated my symptoms, but once I found out your site is about finasteride sufferers I began reading more and more threads. Which caused me to get more and more concerned as all my neurological and physical, persisting or otherwise, matched what is possible for PFS. However I have never had any sexual side effects since I took finasteride, apart from a loss of pleasure in sex, but I have a loss of pleasure in literally everything so it’s nothing to do with the sex itself.
Which leads me to my question, do any of you think that it’s possible for someone to get PFS without ever having any sexual side effects? Also with such a latency of onset of symptoms? Or am I better off just focusing on the more likely MDMA damage in my case? My biggest fear right now is having two dire causes for my current condition, and having to research both of them separately. It’s been a nightmare, as you all would understand, trying to completely understand one understudied condition, I can’t even imagine trying to understand a whole extra condition just in case it’s that instead!
If you could enlighten me I would be extremely grateful.