The First Dance

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?

Italy

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

TV

What is your current age, height, weight?

28, 1.83m, around 82kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Fin

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1.25mg every day

What condition was being treated with the drug?

MPB

For how long did you take the drug (weeks/months/years)?

One week on march 2018, then from january to may 2019

How old were you, and WHEN (date) did you start the drug?

25

How old were you when you quit, and WHEN (date) did you quit?

26

How did you quit (cold turkey or taper off)?

Cold turkey

How long into your usage did you notice the onset of side effects?

Couldn’t say

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections (less, not lost)
[x] Loss of Spontaneous Erections (extremely rare)
[ ] Loss of Nocturnal Erections (couldn’t say)
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Took probiotics, Vitamin C, CoQ10.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

I don’t have any.

Anything not listed in the above questions you’d like to share about your experience?

Nope.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I took it the drug as presented above. Crashed after 9 months following a major stress. After the crash, I was recovering, but my stupid stressed lifestyle kept me from recovering. To this day, I don’t know if I have “real” PFS, whatever that means, or if my body is actually ready to heal and it just need a more “relaxed” state.

That being said, I got hit very bad.

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#2

You heard about this forum on TV? Where was it mentioned?

#3

A national network in Italy hired a service about Fina and its adverse reactions, and there was this one woman complaining with doctors about her son’s sides, and she mentioned PH.

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#4

Let’s write something. Not really an updated, just a rant.

This condition is eating me alive.

In the past months I’ve lost a good portion of my cognitive abilities. I translate and write books/articles for a living. I used to speak English like a native speaker and was a very talented writer, now everything is mostly gone. I keep asking myself why this is happening this way. I set up my business like two months before the cognitive sides hit, and in no time I had enough clients to earn like 5k a month, net profit. It was a good first step.

Needless to say, the cognitive decline led to a decrease quality of work. And when combined with the depression linked to have gone from being the smartest guy in the room to the most stupid person in the world… well, I’m working very little.

My identity was based on few things, and this condition virtually took’em all. I’m not smart anymore. I’m not funny anymore. I’m not emotional anymore. I’m a pain in the ass to be around. A couple of years ago, depressed as I could be, I was still very smart, and used to crack my friend with a very sophisticated humorism. I was very pleasant to be around.

Right now, I don’t even know why I don’t kill myself. And I’m dead serious. I keep thinking that one it’ll just hit me how screwed up I am, and I’ll just end this torture.

I’ve spent this entire day with my friends, and it was painfull to see that I’m virtually no longer part of the group. I can’t connect with anyone. Sometimes even my family members feel like strangers.

I see people going on with their lives with their business, family, and stuff. I’m stuck.

I think the most dreadful part of it is, I’m no longer able to show my emotions. Most of the time I’m in such a pain it’s just unfair, but my face always has this sort of “relaxed”, uncaring espression, not even my psychologist will believe I’m suffering.

Every single piece of my psychology is falling into pieces. My believes are reshaped, my identity is demolished, my values are shaking.

I’m definitely a worse person.

Every time I start writing, I do it hoping to be able to put my feeling in words. But there is no translation for this kind of pain.

I’m so confused, so hurt, so heartbroken.

Phisically, I’m weak. My muscles lost a lot of strenght. My body hair have changed. My jaw is thinner, my face is more feminine. And I have a thousands other symptoms I don’t feel like going through right now.

I’m so depressed I struggle taking care of myself. I think a took 3 showers in the past 3 months. Often times I don’t brush my teeth.

At this point in time, I go to sleep every night hoping not to wake up the next day.

2 Likes
#5

I know exactly what you mean. It feels like a nightmare but I’m not even able to feel it. Fuck this cursed drug. How such a hell can be possible is beyond me.

Hang in there though. If only to say “fuck you” to all the naysayers and idiot doctors who don’t believe this is real.

#6

I couldn’t really care less about the deniers.

#7

I’m sorry to read your story. PFS is truly a disgusting disease.

However I would encourage you to hang in there. Do your best to take care of your body and esp teeth.

Taking care of yourself can do much for your mental health to. I’ve read some studies that indicate that something as simple as mouth health (flossing and brushing teeth) can improve the health throughout the entire body.

You’re still young and the chance that we find a cure or something to help at least during your lifetime is still high!

1 Like
#8

Wanna laugh? My worst fear is not that we don’t find a cure.

My worst fear is that we find it when I’m like 60 or 65.

By the way, thank you for the kind words, very much needed.

1 Like
#9

Let’s set up a few little steps I can take to at least try to get out of this fucking shit. I’ve spent the past 3-4 months lying in my bed all day long watching Netflix and YouTube. Too depressed to even think about anything else.

  • Starting by tomorrow, I’ll resume fast walking, I’d say 30 minutes every day. My phisycal shape is bad. Like, very bad. Let’s start from here.

  • I’ll cut gluten and dairy again. I went for a solid 8 months without both of these products and the results were pretty good. But when I’m depressed is just easy to find comfort in food. There’s no doubt eating right plays a role in my condition. It’s not that drastic, but definitely noticeable.

  • I’ll force myself to work more.

  • I’ll sunbathe. My Vit D was pretty low, and since I’ve responded very well to Vit C before, I hope it was not a one time thing.

Obviously this is just basic stuff. The next step will be supplements, which I’m deadly scared of.

Just for the record, the only three I took were:

  • Vitamin C 500mg a day in october fixed my nails.
  • CoQ10 60mg, gave me dark urines, which I was told was “a sign of detox” (actually not sure about it)
  • Probiotics around one year ago. Felt very little.

Well, that’s it.

#10

Another rant update.

It’s incredible how my life gets worse every month, every week that passes by.

I’m not even sure I can call my friends “friends” anymore. Haven’t seen them in 2 weeks now. Today we were supposed to hang out together, and I’m quite sure they’ve used the fact that my brother tested positive for Covid 9 days ago (he’s been in quarantine since) to ask me not to join them, despite I tested negative and have no symptoms.

I’m growing resentful. Feelings of vendetta are soaring and I think it’s going to bubble over sooner than later. This summer is going to break our relationship completely.

I can’t stand the way I’m being treated. Can’t stand the dynamics of our relationship. I’m falling a little by a little in that panic position when you feel you have no control over the situation and you’d do anything to gain some of the control back. Or, to hurt people you feel you’are being hurt by (EDIT: I don’t mean physically).

I couldn’t even say how my condition is going.

Cognitively I’m still in deep shit.

Sexually, it varies to such a degree it doesn’t even make sense to talk about. Last days have been kinda good. Mood affects my symptoms quite a bit. But my mood is always shit.

I spent 23 hours per day at home. Don’t have much in my life. And I’m losing what I have by the day. Family situation is messed up. Everything is messed up.

The whole situation is shit. And at times I get very, very close to put an end to it.

There’s not one single thing I can gain pleasure out of.

1 Like
#11

Do something useful for the betterment of yourself and others. I built a stool from scratch for a family member last week who needed a small one. Be useful.

#12

That’s exactly the point.

I have no way of doing it. Prior to this ordeal there were dozens of reasons to spend time with me. And I had multiple elements I could base my identity on. Plus, despite dealing with depression I had ways to find pleasure.

Everything is now gone.

I’m failing at readapting.

#14

You can be useful without experiencing pleasure. I don’t feel pleasure but I still know what’s useful to pursue.

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#15

I try every day.

I’ll keep trying.

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#16

How severe is your testicle/penis shrinkage? Does it vary day by day or stay constant?

Save for the genital atrophy, it is very possible that your symptoms could potentially be due to anxiety/depression. The mental issues you are having sound very similar to when I was struggling with severe anxiety/depression. My mental abilities declined to where I thought for sure sleep apnea had caused a hypoxic brain injury.

It could also be a complex issue where some sides are fin related, and some are anxiety depression. I think the likelihood of at least some symptoms being not from PFS is increased by the fact that it took 9 months before the crash (unusually long amount of time but not unheard of) and you mentioning it all starting with a major stressor in your life. Of course knowing depression/anxiety could be a big part of it doesn’t fix the problem, but it would certainly be much more hopeful and actionable if that were the case!

#17

Penis, it varies. Testicles I couldn’t say. It probably varies too.

I do struggle with severe depression. Anxiety not really. Not because I’m not an anxious type, but because after developing PFS I can no longer experience it. I used to get both mental an physical anxiety. Now I can’t even remember how it feels like.

Before PFS depression was bad, but anxiety was worst.

After PFS depression in unbearable, anxiety is virtually unexistant.

But I do have severe mental issues for sure, which factor into the equation. And I know they worsen some of my symptoms, but apparently they also prevent other issues from hitting full-blow. I’ve had proof of this a couple of times, when I would “relax”, and some symptoms got way worse.

It is certainely both, but I couldn’t say for sure where PFS ends and “mental” sides begin.

Quite frankly I’m holding out hope that my condition could “just” be a bunch of symptoms aggravated by the stress, without the underlying genetic / autoimmune / whatever condition.

Situation’s bad.

#18

I just found out my “friends” hung out without me.

Without telling me anything. Pretending they were each doing something else. And the saddest part is, I’d definitely found out earlier if my brain could work properly.

My father won’t talk to me, same for my brother.

I’ve never felt this alone my entire life.

I hope this situation find its end soon. The pain is gettting unbearable and I don’t see any way out.

1 Like
#19

I’m so sorry to hear that man. Do you have any particularly close friends you think you could hang out with, separate from the entire group? Might be less stressful for you.

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#20

@TFD that’s very sad but all too common. It rips ones heart out and is as bad as any of the sides. I took up volunteer work to try to build a new base. I only do one afternoon now as that’s all I can manage but I get to meet new people. You could also look to join social groups in the community which I suspect are not the available right now. It’s a really hard pill to swallow and still upsets me immensely but you’ve got to try to carve out a life to suit this disease. If you recover all of your friends will come back and you’ll forgive them. No one signed up for this.

1 Like
#21

No. I’m in a paradoxical situation where I don’t feel like hanging out with people, but I don’ want to be alone.

I don’t even know how to explain this, the simple act of talking to people can at times be mentally draining.

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