Just posting here for the sake of anyone struggling or feeling hopeless. I have to say having been a frequent visitor to this forum my story and experience of PFS is probably on the lower end of the spectrum compared to some, and for those long term sufferers I just want to extend my deepest and most sincere sympathy - I really hope and pray for a breakthrough treatment or understanding of what’s happening to all of us.
I used topical finasteride 20 months ago, for maybe 2-3 days with some horrendous side effects. Veins, genital shrinkage, suicidal thoughts so strong I had to call family members and fight with every inch not to take my own life at points.
I also had emotional problems, some of which maybe still persist, became much more sensitive and easily triggered. I also felt like my balls and scrotum shrank and stayed persistently small and cold during mornings. Some time elapsed after going through the worst of these symptoms, but every few months I’d have brutal migraines and just feel extremely unwell, usually triggered by stress or sometimes alcohol and drug use which definitely became more frequent and extreme, as the whole initial episode took a big toll on my self esteem and self worth.
Probably about 6 months after my initial crash, I met a girl who I was very attracted to, but despite my best efforts, I couldn’t maintain an erection when we got down to it.
I tried all the usual supplements we see on these forums alongside daily cialis 5mg and have to say cialis has been a godsend as I’ve managed to maintain a healthy and active sex life and my partner has stuck around despite the emotional roller coaster over the last year, the drink and drug use, the constant need for reassurance and the generally depressed and unmotivated disposition I’ve held.
20 months later and I’m still using cialis, but my thinking around this has changed - I have ACCEPTED where I’m at, I have gratitude that I have a high degree of normality back to my life at this point, and I refuse to lie down and be a victim. It might seem all well and good me saying this given where I’m at, but I have battled with the idea I may be taking cialis for the rest of my life, the idea that I’m an idiot for even contemplating trying finasteride given the widespread evidence that it poses major risks, the idea that I am somehow less of a man because my junk doesn’t work the way it once did. But I am where I am, I have to accept the things I cannot change and change the things I can. And what I and everyone else can do, is keep faith that there will be improvements over time and in most cases. Or there will be a breakthrough. Or there are a number of treatments you can try, some may work, others may not.
I’ve stopped drinking and using drugs, have consistently worked out and ran, even through some of my worst moments, and I have forced myself to connect with people. I have not tried any specific diet or used any supplements for a length of time that would align with my improvements. The number one thing that has helped is a change in my thinking.
I actually ran out of cialis a couple of weeks back and even managed to have sex without it, and was well past the 36 hour half life. It wasn’t 100% and there were moments were I thought about just giving up, but given that i couldn’t physically maintain an erection about 6 months ago, this is progress. The headaches and weird disassociation have gone, brain fog is lifted and I’m sharper than ever, my voice has deepened, maybe not through any hormonal change but because my throat isn’t tight with anxiety. I have drive to succeed, I wake up early and look forward to each day, there aren’t even enough hours in the day to help me reach my goals.
I’m not trying to brag or shit on anyone who’s suffering, because I was deep in the hole. But I know there is a paucity of stories like mine on here, and many people get better and don’t bother posting again. So all I can say, as is echoed on this forum many times, is that time, excercise and a positive attitude are absolutely key. I can’t speak for those who’ve endured years of suffering, but for those who are maybe at the 6 month / 1 year mark that are still able to function, I think you can and will get better. Just keep faith, keep a log of how many days / months / years your off this drug and make note of any progress you make.
Sending hope and best wishes for eveyone on this forum affected by this horrible affliction