My story as a long time lurker. Kind of goes off topic

Where are you from (country)? UK

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?) Search

What is your current age, height, weight? 22 years old

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Minoxidil and later down the line saw palmetto

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Applied the set amount daily

What condition was being treated with the drug? For minoxidil none - I wanted to grow a beard. for saw palmetto it was the subsequent hair loss

For how long did you take the drug (weeks/months/years)? in total 1.5 years

Date when you started the drug? March 2020

Date when you quit the drug? April 2022

Age when you quit? 21

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

How long into your usage did you notice the onset of side effects? Was hard to tell

What side effects did you experience that have yet to resolve since discontinuation? Loss of libido, saggy, aged skin, hair thinning, a host of problems

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
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[x ] 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
[x ] Confusion
[x ] Memory Loss / Forgetfulness
[x ] Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts

Physical
[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
[x ] Weight Gain
[x ] Gynecomastia (male breasts)
[x] Muscle Wastage
[x ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[x ] Tinnitus (ringing or high pitched sound in ears)
[x] Hearing loss
[x ] Increased hair loss
[x ] 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? Nothing for many months

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)? -

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

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


Hello everyone, hope you’re all on the road to recovery. i’ve been lurking this forum for a while now and might as well share my story. I never used Finasteride instead I used Minoxidil to try growing a beard and my resulting symptoms are the exact same as all of yours. If you want to chat about anything related to the condition or off topic feel free to message or reply here

While taking (gloomy part)

In March 2020 I started applying minoxidil to my face daily with the recommended dosage. I ignored a lot of early warning signs such as bloating, weight gain and insomnia until December 2020 when I stopped. I didn’t really experience sexual sides during or after this period. As 2021 progressed I began to notice the hair on top of my head thinning rapidly as it had clearly become dependent on minoxidil despite me never having applied it to my scalp. So I panicked and hopped back on in August applying to my head this time and I did this until April 2022. This second cycle was the one that truly fucked me over and I didn’t realise the full extent of the harm until afterwards. My mum decided to buy me some Saw Palmetto to aid with the hair regrowth without either of us knowing how horrifically anti-androgenic it is so I was on that throughout my entire second cycle. I continued to deteriorate throughout it and tried ignoring it until it became too much. The breaking point was around the time I tried having sex with a girl I wouldve been extremely attracted to otherwise and I couldn’t get it up for her. I finally researched personal accounts of what I was taking rather than buying into the bullshit that the ‘experts’ peddle and connected the dots, and finally stopped taking both for good.

By the time I stopped using both products this April my previously sky high libido was in the toilet, my sperm was literally just clear like water, my testicles were constantly hurting, I was having trouble urinating, my facial skin was saggy and loose, my vision was blurry, I had horrible pulsate tinnitus, I was constipated round the clock, my sense of taste and smell was inhibited, I had crippling anxiety from every interaction, my short term memory and general cognitive ability was that of a goldfish, my testicles had shrunk and I was completely anhedonic with no motivation. I would aimlessly stare into space for ages like a fucking lobotomite. The worst of my symptoms lasted 3 or so months but those were the darkest months of my life. I felt inhuman with zero emotions, there’s no way to describe it to anyone who hasn’t experienced it. I’m surprised these satanic medications aren’t utilised as a form of torture because I wouldn’t wish this condition on anyone. The first week I quit I felt almost completely back to normal sexually, then I got hit with the nastiest crash that lasted months.

After quitting

That brings me to today 8 months after stopping. My urination is almost completely back to normal, loose facial skin has slightly improved, blurry vision has improved, pulsate tinnitus is essentially gone, constipation completely gone, sense of taste and smell seems to have recovered, anhedonia has slightly improved, my testicles have stopped aching for the most part, insomnia is gone. Every other symptom wildly varies.

My recovery is not linear and happens in a strange way, since maybe July I noticed it comes in cycles. It could be 2 weeks of feeling like complete shit followed by a few days of good sexual function but really theres no way to predict how long each cycle will last. Each up cycle tends to be better than the last. During my down periods my testicles are soft and shrunken, mood is low, motivation is low, I feel depressed and of course libido is next to nothing. Though what has changed over time is that at least now my semen looks relatively normal when I ejeculate. During my up periods my testicles gain significant size, my mood and motivation increases, my libido goes through the roof and I am much more confident and energetic like I used to be. I think about girls and sex a lot during those periods, sometimes I even text my ex telling her how i’d fuck her silly in 100 different ways. While not even 2 days ago I would have been an asexual limpdick blob. I have no idea how any of this works and frankly I can’t be bothered to try figuring it out.

I go to the gym regularly, I actually bought a membership a few days after stopping Minoxidil and Saw Palmetto. Muscle and strength gain is slower than i’d like but it’s there, I am a good responder to strength training. Recovery definitely takes longer these days and I get fatigued if I go too often. I gained a significant amount of weight in mostly bodyfat but it seems to have stabilised. I have very bad gyno that appeared randomly in June some time and didn’t go away so now i’m rocking a nice pair of honkers. Other than that my body surprisingly looks quite good, my arms are big and I get asked if i’m on steroids on a regular basis. Which I find funny because my body is metabolising next to zero testosterone most days.

Anecdotes and family experiences with 5ARIs

After reading around for countless hours and experimenting myself I came to the conclusion that there’s no quick fix for this bullshit and there is no reason to see dermatologists, private doctors or anything. They are not your friends nor is this hidden disease within their realm of knowledge. The best cure is time but everyone is different and will recover at a different rate. At first I tried supplementing everything I could, ashwagandha, zinc, vitamin D, amino acids etc and I realised there’s really no point. I haven’t taken any supplements for about half a year and i’m just waiting it out. I know I said my recovery isn’t very predictable but on average i’m getting better and from all the accounts i’ve read the vast majority improve over time.

I gave up trying to explain my situation to people long ago because I just ended up sounding like a schizophrenic. My own family doesn’t really care or believe me. Well most of my family because my elderly dad (who doesn’t even really need it) decided it would be a good idea to hop on finasteride a few months ago despite my many warnings. He quit after a couple of days because he claimed it made him impotent and only then did he want to listen. He was completely back to normal within a week thankfully. My brother however has been using finasteride for many years because he suffered from long-term lyme disease which thinned his hair. He has several issues as a result but he refuses to realise it because there literally wasn’t a baseline for him to compare with, he was in his early teens when some moron put him on it. He is permanently constipated with digestion problems, the same saggy facial skin as mine and zero libido or desire to meet girls or anything. The most stupid thing of all is that my family does not have a trace of genetic hair loss and all of this nonsense is a result of hairloss drugs.

This whole ordeal has made me realise a few things:

  • how bad it is to blindly listen to an authority figure without doing your own research.

  • The world is plagued with the cancer of lip service which gives us a false sense of security until shit hits the fan.

  • There are way too many things we take for granted.

As for where i’m at mentally i’m completely winging it through life without any future plans or aspirations and taking every day as it comes. Having wealth or more material possessions than I currently do means genuinely sod all to me if I spend most of the time as a eunuch. I don’t consider myself to have depression even though i’m down a lot and the disease is constantly in the back of my mind. I can have a great day right after one where I was down in the dumps.

Cheers

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Hey @anon16154436, so sorry to hear this has happened to you. As I know many other members will agree, your story is all too familiar. My PFS experience has come with many ups and downs as well, and continues to fluctuate regularly.

You’re certainly right to say that we take far too much for granted. A shame what it takes to learn that lesson.

I hope you will continue to see improvements with time. Also, be assured there has never been so much momentum toward research and understanding of this condition as there is right now in this community. We have recently funded a study that will likely begin early next year and are in the works of planning a concurrent one.

If you’d like to help fund these efforts, please consider doing so here. In the meantime, this community can be a good source of patient support. While we can’t offer any quick fixes, we all know what you’re going through and are here for you to lean on.

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Thank you for making this post and coming forward. I’m very sorry this has happened to you. I also suffer from such immense regret and contemplate all the things I took for granted. It’s truly horrible. But it’s not a hopeless situation and we badly need all hands on deck for this fight. I sincerely hope over the coming days, weeks or months that you will find the strength to join those of us who are trying to fight our way out of this hell.

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Surprisingly the loose doughy skin is getting better with time, even though i’ve gained some weight. I was surprised as I thought this would be a permanent side effect. Not pre-minox levels but it’s not horrid. Haven’t really had an up cycle in my libido since mid November but most days it’s ok-ish. Usually able to have decent erections and can get them on demand without contact if I focus. I have had a few bad days though where an erection is almost impossible to get. For sure better than I was just after the crash though. In the first couple months after the crash it took maybe 30 mins to achieve orgasm during masturbation, now it’s more like 5 minutes even during down cycles. During up cycles I think the quickest i’ve managed is a minute, basically pre-minox time. Energy levels are ok. Sleep has been fine. Been able to add numbers at the gym. Kind of just hanging in there physically waiting as everything slowly goes back to normal

Something interesting I noticed is especially over these last few months ive been feeling more like my old self personality wise. Before minox I was a very compassionate person and during the worst of my symptoms I became completely indifferent to everything like a robot. Now i’m slowly starting to care about things again

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Had a few days of bad testicle pain a few weeks back but that went away, testicles are still a fair bit smaller and have a few odd days every month where my dick just dont wanna work. But for the majority of the time my sexual baseline is back to about 75% of what it was, most days I can easily get and maintain an erection. Semen quality definitely improving, looks basically like what it was before. Orgasm quality also improving noticeably

Able to lose bodyfat/weight quite easily on a diet, skin is still slowly improving. Energy levels are very good especially after heavily reducing sugar in my diet but thats a given. Sleep has been ok

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had about a week of close to 100% sexual recovery that’s gone down to a (slightly improved) baseline, ive been jacking off at least 3 times a day the past month or so. Orgasm quality still improving, ejeculate shoots out again like it used to. Skin still improving. No more testicle pain. Semen quality is good about 75% of the time but on bad days it’s a little watery. Erections are getting easier to obtain and maintain even with the lowered sensitivity. I cut out most sugar in my diet and my weight plummeted from 90kg to 82kg in the course of a month and a half without losing much strength at the gym so feeling much better overall

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