Does this feel like a surreal experience to anyone else?

General Discussion
#1

Hey all, hope you’re doing well. I just want to share a thought.

So this experience has been pretty horrible all round, for obvious reasons, but one of the biggest mindfucks for all this is just how unexpected and surreal it is. Like, I’ll try to explain. With something like, say, cancer, I’m sure it’s a horrible experience and not something anyone wants to go through, but at least if you get it there’s a whole universe of treatments, support networks, research, public visibility etc about it. It’ll be tough but you’ll have a huge pool of research and support to pull off to get through it. Everyone understands cancer and knows what it does even if it’s still horrible. You can meet others and talk about your experience to professionals who know exactly what’s going on.

But for PFS, it’s like this completely hidden and random experience that no one knows about. The effects are so fucking strange that many people don’t even believe they’re real. Even just the fact that a simple hair loss drug can mess with your body so bad seems confusing beyond belief.

Like, sometimes I feel like I’ve entered this strange realm that shouldn’t even exist. The brain fog, the derealisation, the change in attitudes to sex, the fatigue… I had no idea anything like this was even possible. I’m still in disbelief half the time.

And that’s saying something as someone who was a something of a hypochondriac before all this. I’ve always been very aware of health and safety and that drove me to eat healthy, stay away from drugs, etc. I knew that the body was fragile so I always took care to be healthy and not take unnecessary risks. Even when I took fin I signed up for some lower libido but nothing this crazy.

And even the doctors don’t really seem to know what it is. Most of them I saw said it was just depression or that it would wear off in a couple of weeks. The fact that the body can change so much by a commonly available drug and that no one, not even the doctors, seem to be aware of it just messes with me I guess.

I’m not really sure where I’m going with this. Just thinking aloud I suppose. I hope there’s an answer for all of us, and I wish you all the best. Take care and stay strong.

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#2

I’m sure most if not all relate to this.

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#3

Cant totally relate…Only for those short moments where my mental clarity and thinking ability return, im basically brain fogged all the time.

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#4

Yeah, I know how you feel. Sucks to hear about your brain fog, I usually distract myself from it but sometimes I feel it a lot and I think about these things. I just hope more awareness of this condition comes soon.

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#5

I couldn’t agree with you more. For me it is like hard to believe what i have been going through.

I knew fin had side effects before I took it but I was told it was rare so I took it. :-1:

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#6

Yep, I didn’t think it was possible with the wildest most extreme substance that could be imagined.

Turns out that’s what this hairloss drug is for some people, and there’s no way to know until it’s happening.

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#7

I didn’t know about PFS back when I took fin but if anybody other than a doctor told me about it or said that he had PFS, I don’t think I’d believe it. I’d have thought that he has mental problems. Now I feel like I’m living in a sci-fi dystopia / horror movie.

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#8

I agree. Because nobody belive that this coulde happen and no proffesionell take it serious. The different Between treating hairloss and the devastation of this condition is so unfathered that it hard to belive its really happend. Its like living in a parallell world where nothing coulde be trusted anymore. And all this make us lonely in our devastated circumstanses.

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#9

The reason the rest of the world doesn’t believe that what we have exists is because they only hear about it indirectly and rarely, as we hide in Internet forums talking to each other about herbs, TRT, and antidepressants (none of which is productive at all as they never do a thing).

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#10

:clap::clap::clap::clap: :clap:

#11

As someone who has had both cancer and PFS, I can say that this feels so true. It makes a huge difference to have a known treatment protocol and have doctors, friends, and family take you seriously and give you some space and sympathy. After so many years of quiet suffering from PFS, it was a relief to finally have a socially acceptable reason to just collapse on the couch every day.

Cancer was way easier to deal with than PFS. Not even close. And if I could do my brutal chemo regimen again, but for curing PFS instead, I’d do it in a heartbeat.

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#12

@M_C sums it up, what type of cancer did u have and was it prior to taking fin?

#13

Blockquote[quote=“LazarusRy, post:12, topic:48888, full:true”]
@MerryChristmas sums it up, what type of cancer did u have and was it prior to taking fin?
[/quote]

Testicular cancer. Happened a few years after I took finasteride. I don’t think the two were related, just bad luck.

1 Like
#14

Mmmm I’m not sure mine was also testicular cancer. A scientific paper stated cancer is more prevalent in PFS. Not surprisingly women on hrt are at greater risk of breast cancer. Id say it’s another thing to put firmly at Merck’s front door. .

#15

I also had testicular cancer 20 years ago when I was 23…Long before finasteride or developing pfs.

#16

I might as well post this here.

I have another thought I want to share - does anyone else here ever wish they could go back in time and stop themselves from taking the drug? I mean, I’m pretty sure I know the answer, but I want to ask anyway.

I’ve been trying to find acceptance, love and all that as a result of this disease, and in some ways it’s made me more appreciative of life, but at the same time I always, ALWAYS just feel “I just want to go back” and live the life I had been planning. I mean, I had so many plans, so many ideas, so many life experiences I wanted to try, and the idea that they’ve all been severely affected by this condition, and at such a young age, just makes me feel sad and heavy. I used to be full of so much joy for the future, each day was a new adventure, but now it’s just a struggle to get through and to find some peace in this awful place. And even if I did get better, I still feel so damaged as a result, I don’t feel confident and alive anymore, I just feel sad and upset.

I sometimes think I’m being selfish, you know I think maybe this is part of God’s plan for me, maybe I’m meant to help people based off this experience, but there’s this part of me that just wants to go back to my old way and forget any of this even exists. I mean, I’m super sympathetic to everyone here, and even other people who deal with other medical issues now, but I still feel upset and betrayed that I have to go through this. I mean, no one should, but it’s still a strong personal feeling I’m sure everyone deals with.

I had a hard life before this and just when I was getting on my feet the universe sent me this massive fuck up that undid all my good work. I just wanted to enjoy life for a little while, be a young man you know, and now am I not only back to square one, but it feels like at square -27 or something. People have always said I was mature for my age but even for me something like this is just fucking awful.

Anyway that’s my rant. Maybe someone can relate. I really wish this didn’t happen for any of us. It makes me so mad and angry that something like this is out there. I don’t want to be a Debbie downer but I have to share this with someone. I still hope some good can come of this but it’s hard.

Peace.

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#17

@maxim117 i relate fully, many ive spoken to a few outside of the forum who mirror your words . When the future feels so bleak its only natural to look backwards at key points in your life. For all of those who are stuck with pfs the key event was taking this fucking drug. If we improved the shackles and regrets of the past would be removed and we would only look forward. One day!!!

#18

No point complaining - we’ve all been there. You just need to ask what you can do to make both yourself and the world better. For many of us it can only get better.

#19

Where in Australia are you from @maxim117?

#20

Hey orthogs, not sure if I know how to use the quote function correctly lol.

I’m from Sydney, but sometimes I spend time in the Southern Highlands. I’m guessing you’re from here too? Where are you located?