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, Florida
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?)
I’d heard of this site before, but came here today because it was mentioned in the Reddit FinasterideSyndrome subreddit by someone tonight.
What is your current age, height, weight? 49, 6ft, 155lbs.
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
I started at 1mg/day, then cut to half, then cut to quarters. I took a total of almost 270mg and then my erectile system totally collapsed a few days short of 13 months on the drug.
What condition was being treated with the drug?
Hair loss on my head.
For how long did you take the drug (weeks/months/years)?
A few days short of 13 months.
Date when you started the drug?
October 1st, 2021
Date when you quit the drug?
A few days before November 1st, 2022
Age when you quit?
How did you quit (cold turkey or taper off)?
I guess you could say I tapered off because I was only taking quarter pills for the last two months.
How long into your usage did you notice the onset of side effects?
I had side effects by six months.
What side effects did you experience that have yet to resolve since discontinuation?
[X ] Loss of Libido / Sex Drive
[X ] Erectile Dysfunction
[ ] Complete Impotence
[X ] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[X ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
[ ] Emotional Blunting / Emotionally Flat
[X ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[X ] Suicidal Thoughts
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X ] Testicular Pain
[X ] Testicular Shrinkage / Loss of Fullness
[ X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
[ ] Prostate pain
[ ] 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
[X ] Lowered body temperature
[X ] Other (please explain)
I’m really surprised this isn’t here: Insomnia. I slept 8 hours per night every night of my life. If I was short one night, I’d always make it up over the next two nights. Now I sleep just as regularly, but it’s 5.5 hours per night. 2.5 hours less every night since my erectile system collapsed, for 4.5 months so far. It’s not getting better. It’s staying exactly the same. I’ve even tried forcing myself to stay in bed. My body just doesn’t sleep like it did before.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I got a Urologist and he has me taking 5mg/day of Cialis just to get blood flow down there. The truth is that I’ve been really spotty about it. I would not say that it’s doing anything. I do see the logic of maximizing blood flow there. I am wary of any penis-affecting drugs at this point.
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)?
My total testosterone was 482 four years before I started Finasteride.
It was 559 when I’d been on Finasteride just over 6 months.
It was 257 five weeks after crashing.
It was back to 371 by three months off of Finasteride.
Anything not listed in the above questions you’d like to share about your experience?
I told my doctor that my penis had shrunk while I was on Finasteride and she said to cut my dosage and not worry about it. I feel dumb now for not freaking out more about it. Her total lack of concern about it made me think that there was truly nothing to worry about. I wish I’d stopped then. I feel stupid for staying on it six more months until I lost all erectile ability completely.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I watched a hair transplant surgeon on Youtube, Dr Gary Linkov. He insisted that hair transplants should happen alongside drug therapy. He said that Finasteride is safe, and that people can cut their pills in half, or even in quarters if they have side effects. So I signed up on Keeps.com, I got a discount on my first pills. My doctor kept encouraging me despite my side effects. The truth is that I didn’t report every side effect because I was under the impression that erectile problems came with the territory, but went away in 30 days if I ever decided to stop. I was distracted by the red herring of my hair while being told the sexual stuff didn’t matter because my dosage was “super low.” I finally decided to stop taking it when my testicle pain was just too much and too constant.
The second evening after stopping I felt my penis detach. I could not get any sexual reaction at all out of it for 25 days. My Keeps doctor assured me that I’d be 100% normal again within 30 days. On the 26th day I was able to get my first erection-like behavior out of my penis. On the 35th day I saw a Urologist. He scoffed at my story and said he’d never hear anything like it, especially at the microscopic dosage I was taking. He said I would definitely be 100% cured in six more weeks and that’s when he gave me the 5mg/day of Cialis. He also did some blood tests. That’s when I got the 257 number for total Testosterone.
When we had the 8 week follow-up (he was on vacation at six weeks) he said the 257 number is too low, that the real reason for my problems was that, and he wanted to put me on a drug, I can’t remember the name right now, but it’s to help women ovulate but also, he said, causes men to produce more testosterone. I told him I didn’t want to get on another drug right away. He said to wait three more months and we’d talk again, but that he couldn’t imagine any other outcome than me getting on that drug at that time. We did blood tests again then (early Feb) and I’m scheduled for the same blood tests just before our early May follow-up.
Already my blood tests show my numbers coming back to normal. I’m really glad I didn’t take his additional drugs. My penis and ball still ache a LOT, a LOT of the time. I don’t feel sexual arousal anymore. I still feel attraction, but not arousal. I have no morning erections. Six months ago I was still having really strong morning erections, to the point where I had to masturbate to get it to relax so I could pee. Now my penis is shriveled and tiny. It requires a huge amount of manipulation to get any kind of hardness at all. The orgasm is mechanical and pleasureless. The ejaculate is watery. I didn’t realize how much hope I still had for finding a wife and having kids, and how quickly that could all go away.
My first month without a penis I had REALLY strong suicidal ideation. After a life where that sounded ridiculous to me. I know it was physiological, I think it was a reaction to my major pleasure center being disconnected, because the intensity was so high for the first month, but then really subsided after that. I still think about killing myself all the time, which is so weird because I’m just not that guy. But, especially on the days when my penis and balls REALLY hurt, dying sounds like it would just be a release from pain and not missing any happiness.
At 4.5 months I don’t know what to do. I still wake up and go to sleep enraged about my situation. I’m constantly litigating this in my head, arguing with both of my doctors in my head. Fantasizing about punishing drug manufacturers in my head. Part of me wants to do something to stop this from happening to people. Another part of me wants to stop engaging with this topic that only causes me pain. I do feel like my life was ruined. I’m really concerned about the fact that I only sleep 5.5 hours a night now instead of 8 hours before. How much did this fuck up my whole physiology beyond just my penis? I wonder how many years have been taken off my life, in addition to the option of a really happy, sexy marriage that I still thought was coming.
With all of that said, I think I’m going to accept it, try to find the best in it, and move forward. I do think I’m going to do something to help. At the moment, my current maybe-target is trying to get the PFS Wikipedia page helped, maybe. I don’t really know. I’m still so hurt, so angry. I haven’t told most people, and that’s partially because the people I have told have been no help at all. When did EVERYONE suddenly become experts at my erections? No, it’s not my blood pressure. No, it’s not psychology.
So, weirdly, I’ve been coming to the forums more and more. And, weirdly, it helps to scroll through the lists of guys talking about killing themselves. Five months ago I would’ve never, ever believed that I could be here. And here I am. I hope you guys don’t actually kill yourselves. I’m going to keep considering it, but I would definitely take people with me if I went. But, I don’t intend to go that way. With the pathetic mess that is left behind, I’m going to keep working on my projects and maybe my friend group is now guys who talk about killing themselves on forums. Maybe that’s just my life now. It still really angers me to acknowledge any positivity that came from this event, but I do feel really connected to all the shared pain here. I get it. I want to die too.