I’ve been away from the forums (both here and solvepfs) for almost 2 years - back in 2016/17 they were toxic and the most horrible place to be. I am so pleased that upon returning, there is a real sense of optimism and progress, which is super refreshing. I know this means other, more experimental, forum members have been driven away, but at least it seems like we’re about to make some huge leaps on the science and media fronts. I’ve expressed it privately, but huge thanks to @awor @axolotl for leading the science front, and from what I can see, @Jaime and @pete on the media awareness front. You guys are real-life fucking superheroes (can we do superhero badges for those who’ve contributed significantly?)
My story is pretty similar to everyone’s here, but I’ve now had PFS for 6 years. I’ve come close to calling it quits on life over 500 times (I’ve documented this in a personal diary) and forced myself to vomit up sleeping pills when I actually took that plunge. Thank goodness I did.
Just to recap my sides:
All the mental/emotional sides are the worst for me - I still can’t shake anhedonia or severe brain fog after 6 years. I have welcomed 3 beautiful nieces and nephews into the world since I’ve had this and although I love them, I don’t really feel much when I’m around them, which is sad.
Brain fog, anhedonia, visual snow/floaters, memory problems, concentration problems, sleep problems all remain
Physical sides such as thinning skin, muscle loss, stomach fat, etc - the usual suspects
I have sexual sides, but not as bad as most. Zero libido except when I take certain illicit drugs, but can achieve and maintain erections. Sporadic nocturnal/morning. Almost rarely get a spontaneous erection.
I am back and want to contribute in a big way - I am speaking with admins privately about this and hope to contribute some of the skills I’ve learned in the last 6 years to our cause - but if anyone else wants to connect, and particularly around media, communications, and fundraising I would love to chat. I have done the survey, am donating regularly and will be doing 23andme as soon as my kit arrives this or next week.
I also want to give an update for those in the early days of this shit: life does get better
It may not be the same as before, but you can still achieve some of your goals, and you will get more stable. 5-6 years ago I was getting 2 hours sleep a night, lost everything, lost friends, was suicidal daily, tried every protocol known to man (including cdnuts), was living with my mum and a shell of a human. Fast forward to today and I have achieved:
- completed an MBA with honours
- launched my own business which performed okay, and ran that for 2.5 years
- got a job at one of Australia’s top 10 startups (according to LinkedIn) and have now risen to be a team leader, and report directly into our COO.
- got a secondment in the United States for 6-12 months, starting in 3 weeks. I’ll be living in Salt Lake City
- bought a small boat that I take out fishing every second weekend - it’s my little stress reliever and is one of the only things that makes me feel something strong - a real sense of satisfaction and a rush when catching a good fish
- reconnected with friends and family, and have a stable social life
- now throwing everything into getting better
I’ll be updating this diary of sorts every week, but if you don’t hear from me, please don’t worry I am probably just busy. I am eagerly awaiting the Baylor study, and awor/axo’s research efforts. I would encourage everyone to contribute.
One last though - I did some simple math today. There’s been 16k adverse reaction reports for Finasteride globally. Let’s assume there’s many more sufferers out there who don’t know what’s wrong with them or that we haven’t engaged.
If even those 16k sufferers contributed $50, once, we would have a kitty of $800k to contribute to research and finding a way out of this shit. Now is the time to act as one, more than ever.