Late Member story, whoops

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)? USA

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?) Googling PFS symptoms

What is your current age, height, weight? 30, 5’9, 155lbs

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg ED
What condition was being treated with the drug?
Supposed Androgenic alopecia but never got baselines tested so… that remains unknown.
For how long did you take the drug (weeks/months/years)?
~2.5 years (first 6 months was sporadic)
Date when you started the drug?
July 2020
Date when you quit the drug?
January 2023

Age when you quit?
30
How did you quit (cold turkey or taper off)?
tapered off over 8-10 weeks
How long into your usage did you notice the onset of side effects?
1-1.5 years

What side effects did you experience that have yet to resolve since discontinuation?
Penile/testicular numbness (first and main symptom throughout), still some anhedonia, still cant get an “ahh” or “relief” feeling from anything a normal human would or like I used to, even for just a few minutes.

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
[ ] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[ X] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X ] Reduced Ejaculate
[x ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

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

[X ] Other (please explain)

  • Insomnia
  • persisting GI upset
    -No energy when working out, like zero
    -Severely worsened ADD - and I am super slow, insanely slow. its frustrating.
    -Feel like I can’t smell very well? it is not totally gone but I realize I can’t whenever I try to purposely smell something.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
-Physical therapy for atrophied perineal muscles/pelvic floor, potential dabbling with a couple of things in the future but wanting to see others’ experiences and or learn more about anything before doing it.
-Acupuncture

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)? Nothing pre because my “doctor” worked for a greed based organization that has nothing in mind except gaslighting the ego of young healthy males.

Post bloods - I dont have a link atm but quick summary:
TEST total: 802ng/dl free: 19.3 ng/dl
Prog: 0.53 ng/mL
Estrogen: 36.2 pg/mL - high
DHEA: 156.2 ug/dl - low
DHT: 11.1 ng/DL - extremely low
SHBG: 26 nmol/L - low

Anything not listed in the above questions you’d like to share about your experience?
I tapered off very slowly despite every single source saying that you can stop cold turkey cus I was terrified of a permanent crash or axis failure after taking for so long. I am a pharmacy student and I am well aware no drug directly affecting hormones should be stopped cold turkey. I didnt crash but did not seem to help alleviate anything necessarily.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I was bad about taking the drug or remembering to for the first 6 months or so. Then I was fairly religious about taking it every day. I didnt have any sides at all (except in retrospect probably diminished erectile function, definitely loss of morning wood but like an idiot I played it off to stress or getting ‘closer to 30’… yeah f’n right). Then suddenly about 1.5 years in I noticed one day that my underside of my penis felt kind of numb and It slowly but surely continued, and progressively got worse for about a year (didnt attribute this to FIN as I never even knew it was possible - I read a lot before I got on it, I never remembered seeing that in May 2020. maybe i didnt look that hard). I had an idea it could maybe have something to do with it but after so long I didnt think so, also I had 3 doctors tell me It WASNT due to fin, and I even took a month or two break last summer and it did not improve so I really thought fin was last resort as the cause. Therefore, I know these symptoms are persistent and here to stay at least for a long time unfortunately.

I have been off for 10 weeks, depression and the intensive anxiety subsided quickly, anhedonia has slowly eased but I am nowhere near where I was before, if I even remember what that is. Cognitively I feel horrendously slow, can’t pay attention for more than 30 seconds, can’t remember shit, can’t plan anything, prioritize, finish anything I start, complete simple tasks. my executive function has practically been deleted. I thought these would subside first and it turns out its almost as persistent as the numbness, but that is ultimately and seemingly forever will be my most annoying and truly discouraging symptom. My hormones are still kind of all over the place, hoping that rebalances soon.

I am willing to try basically anything that proves semi-promising at this point although now I have a disdain for taking practically anything. I cant live like this though, if it were a survival of the fittest situation I guess my lineage would stop at me (that’s beyond my choice or not). It is pretty real when your biological role no longer applies or is much of an option anymore, much less a recreational activity for my own mental and physical health as a 30 year old that was perfectly healthy and happy, fulfilling those duties and then some before all of this. Don’t even have a family yet or married… which is prob a good thing as idk how useful I would be in certain roles for the time being.

Hoping for the best, for all of us. I said it before I knew what the issue was, and I will still say I wouldn’t wish this on my worst enemy, it absolutely not fair especially to get punished for just trying to work on yourself.

4 Likes

Welcome to the forum @wdnation1!

its bad enough that people are not warned about potential long term side effects from their doctors, but when they’re actively denying that serious on-drug side effects are not due to finasteride - that’s true neglect.

This is a good way to describe that constant uneasiness that many feel.

It’s still pretty early for you, and it seems like you’ve already have seen some improvements - i hope that those continue.

In the meantime, here are some things you can do -

1 Like

I’m going to be honest, everything has been tried EVERYTHING. People will improve yes. Cured? Rarely. Unless of course you’re still like within the year of quitting… but our best bet is fund these studies asap spread word. That is the quickest way to get out this crap hole for everyone

3 Likes

Thank you. I reported them to the FDA a while back and also I have been in the texting group and have been donating for a few months as well. (Sorry this story was posted months after it should have been). Great group of people, honestly. We will be the ones to find a cure.

1 Like