My PFS story, didn't know this could happen to a person

Member Stories
#14

I hate writing this because I know no one likes reading sad posts about this syndrome, because it makes others lose hope too, but as Aragorn says in the Two Towers, ‘there is always hope’ … so I hope I don’t bring you down too much. I have reached month 4 since discontinuation of finasteride and there is no improvement of my symptoms. I think the first step to recovery is being able to improve anxiety and depression and I have had no success so far. It seems every thought that comes into my head starts a train of thoughts that lead to me thinking about taking finasteride and developing this syndrome.

For example I am working on cognitive behavioral therapy, which basically involves avoiding triggers that give you negative feelings by changing thoughts and behaviors and eventually changing feelings. But it’s hard to avoid triggers when everything in the world and every memory I have before finasteride is a trigger. Why? Because it’s a constant reminder of how I used to feel before finasteride. I can’t think about a past time when I felt happy (which is one of the methods therapists suggest) because I know that If I could repeat that experience I wouldn’t enjoy it like I did back then. I think that if my body could take the first step and give me a day of partial remission I might be able to use that going forward, but unfortunately, I have had no full days of partial remission, just a few evenings that were likely related to supplements I tried.

From the recovery or partial recovery stories I’ve read people usually experience a remission for atleast a day in the first 3 months post-fin. And then they can use that as motivation to keep pressing forward and improve the debilitating anxiety and depression, and once that’s dealt with dealing with physical symptoms probably comes so much easier, in that it becomes easier to follow a protocol or to make appointments with doctors. Has anyone gotten a full 1-day remission/partial remission for the first time post 4 months?? Until then I’ll keep reminding myself of Aragorns words of inspiration in the Two Towers.

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#15

test results
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Got these results ordered from Dr jacobs. everything is in normal range but he said my bioavailable T and my RT3 are on the low end. he is suggesting armour thyroid and clomid to try to bring them up and see if it helps with my symptoms

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#16

So it’s been a year and not doing any better. I barely still have my job - I cut down to 32 hours - but the workload is still there and it drives me crazy disappointing people I used to work with. I was (still barely am) an environmental engineer. I used to be able to handle large complex projects by breaking them down into little bits and completing each bit one at a time, doing that used to give me a hit of dopamine or whatever each time i completed a minitask that drove me to take on the the next mini-task - that mechanism is completely gone now, there is no task-reward process in my body/brain anymore its just going through the motions for survival and then contemplating suicide every hour of the day. As with many severe sufferers sexual function is an afterthought — but yes things are still close to dead down there. My testicles are almost numb - like you know when you see someone get kicked in the groin - most every guy cringes because they know how much that hurts, but not me anymore - my testicles are just another part of my body … they can feel pain but not the special kind of pain reserved for fully functional guys. Not having ‘balls’ (in the euphimistic sort of way) is one of the main problems with this disease and why it doesn’t get more attention. I don’t have the ‘balls’ to kill myself. I don’t have the ‘balls’ to speak out publicly about this condition. I don’t have the balls to follow a consistent diet and exercise routine. I don’t have the balls to accept I have this syndrome and move forward. My goals is like @Sugarhouse says … to get to as stable as possible with this syndrome so that I can contribute constructively to the community. How do all find a way to ‘grow a pair’ and make something happen - the problem is that’s the very problem we’re dealing with.

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#17

Ugh and this is the path I’m on, the no task-reward phase has kicked in and there’s only one way out.

didn’t know this could happen to a person
Me neither…and yet it’s been known for decades.

#18

Are you still taking the ssris? They can also cause the side effects you are dealing with right now. Also, check your prolactin just for the peace of mind. If it will be normal then pfs most likely. Your testosterone values are very good from what is seems.

#19

So sick of people telling me to make a list each day of things to accomplish … yes this is something I used to do pre-finasteride, I remember the feeling of slight reward when I got to cross something off a to-do list … this is just not possible with PFS lists are as pointless as my dick

#20

right now I’m taking wellbutrin, gabapentin, and seroquel. Im seeing a psichiatrist that has dealt with PFS and he said this combo worked for one of his patients

#21

I’m so sorry to hear things aren’t going well @fearsomepigeon. I wish I had some more constructive advice than “hang in there”, but sometimes you just need to put one foot in front of the other.

You are incredibly brave making it this far, and even if you don’t feel that anymore, no-one can take that away from you.

We now have an amazing research opportunity on the table (Out of the wilderness: New scientific research and major awareness campaign). An awareness campaign which is getting good cut-through. Keep the faith and keep going as long as you can.

Take care of yourself.

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#22

I had two of those early on and my reaction to the first one was just like yours. The second one I was too nervous about it going away to enjoy it much at all. Does anyone have any theories about what that is? My guess is there’s a sentience behind all this and it’s done merely to torture us.

#23

Your theory is as valid as any other you might find here, unfortunately.

#24

What is the consensus…a last gasp of receptors? My second one began in bed around 3:30am and felt like a flood of good cheer flowing out from my spine. It felt so strong that I was afraid it would overwhelm my system and shut me down for good, maybe it did.

Wonder if there’s a way to hook a new patient up to a full montoring scan and catch it in the act…bottle it.

#25

It shows that this is repairable. Finding the permanent switch is the holy grail

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#26

I don’t know Laz, I think that’s what the pedants call ‘begging the question’. But as a man of faith that shouldn’t matter.

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#27

Correct mate that’s the hope. Most get the odd window which is something to hang on to no matter how bad.

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#28

I just don’t know what a treatment or cure would even look like, do you?

#29

Well without knowing what’s wrong with us nobody does. If the root cause is epigenetic, as is theorised, then the hope would be that gene editing technology could possibly be of assistance down the road but who knows. This isn’t even worth giving too much consideration to at this stage because either way we’ve 0 chance of ever tangibly improving the situation unless we know what the crack is. Let’s keep building on our momentum, find out what’s actually wrong with us then we’ll cross that bridge when the time comes.

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#31

It’s really pointless to think too far beyond the next 6-12 months of this issue.

I can give you a best case scenario, I can give you a worst case. There’s not much point though, because there are far too many variables.

We have an amazing group of researchers interested in identifying the driving mechanisms involved. Let’s start by making sure they’re well-funded and leave the rest to science for now.

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#32

I’m doing ok. Kept my behavior off this stuff. Did ketamine. And on gabapentin, Seroquel, and Wellbutrin. I’m married now. (Settled for a girl but who doesn’t lol) Have to take Viagra lol. If u want my advice - stay off blogs. This sucks in a way cause it offsets public awareness of pfs. But ya. And get a good psychiatrist. I’m not saying pfs isn’t real. But many chronic illnesses can be alleviated in this mind.

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#33

Can you expand on this

Do you think the mind body connection can help?

#34

How are you now @fearsomepigeon