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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?)
Stumbled across it on Google after a lengthy process of trying to work out what’s going on with me. -
What is your current age, height, weight?
I’m 22, exactly 6 foot and about 10 stone. -
Do you excercise regularly? If so, what type of excercise?
I do a lot of running, a lot of walking, a fair bit of yoga and recently I’ve been doing 100 push ups a day. -
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Previously vegan for four years but I added eggs and fish back into my diet in July. Gluten free for the last two years but back to eating wheat, still avoid all processed foods, refined sugar and saturated fats. -
Why did you take Finasteride (hair loss, BPH, other)?
I took isotretinoin for very severe acne. -
For how long did you take Finasteride (weeks/months/years)?
I took it for just over a week. -
How old were you, and WHEN (date) did you start Finasteride?
I was 19 and I started it in the Summer of 2015. -
How old were you when you quit, and WHEN (date) did you quit?
19, Summer 2015. -
How did you quit (cold turkey or taper off)?
Cold turkey -
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
Generic, can’t remember exactly but I remember referring to it as accutane. -
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
20mg/day, which is a fairly minimal dosage. -
How long into your use of Finasteride did you notice the onset of side effects?
By day two or three. -
What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[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
[ ] Watery Ejaculate
[ x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[x ] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[ x] Severe Depression / Melancholy
[ x] Suicidal Thoughts
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] 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?
It’s been a while trying to work out what’s going on with me, so the first real steps I’ve taken are seeing an acupuncturist and herbalist. I’ve tried this method before for something and had complete success so hoping that it will prove useful once again.
I’ve also been meditating to help with the stress this is causing me.
If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
I had no blood tests previous to this episode. I had two blood tests, done about a year ago:
LH was high, can’t find any figures though.
SHGB was 55.5 nmol/L, high but within normal range.
My total testosterone was 50.8 nmol/L, which is quite frankly ridiculous. Seems to be almost twice the upper limit.
My progesterone was high by one or two points.
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
I’ve noticed spider veins appearing from the base of my penis and gradually becoming more noticeable. I wouldn’t say they were varicose though, almost seems like the result of blood not being able to flow as easily or something.
I had all of the mental health problems long before accutane but obviously this hasn’t helped.
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
My story is confusing even for me, so I’ll try to be comprehensive as possible without missing out any key details.
Take yourselves back to 2015, where, I, an acne riddled teenager, felt I was out of options. I had suffered from extreme anxiety and depression since starting secondary school at 12/13 or thereabouts. My dad wanted to help me, so he took me to see a dermatologist. She said the only thing she could offer was accutane. I was very apprehensive, having seen the BBC 3 documentary, ‘Dying for Clear Skin’, but she assured me that it was a safe drug. I was prescribed a treatment of 20mg a day that was meant to last for a year or something. From the first tablet I took I noticed I was having extremely vivid and weird dreams. I always tend to get weird dreams when I am very depressed or anxious, so assumed this had something to do with the link between accutane and mental health but didn’t stop taking the pills. From day two or three I noticed I couldn’t get as hard when I wanted to masturbate, and I didn’t want to masturbate as often as usual. When I did, my ejaculate was greatly reduced (to about a quarter or less). I had no spontaneous erections at any time (morning, night). I convinced myself this was down to how anxious I was about getting these side effects. Continued taking the drugs for a few more days, but stopped on day 8 or 9. Can’t quite remember. By the time I stopped taking accutane, my skin had stopped producing oil, but this started up again after a week or so. My sexual function returned 100% in a day or two. My lips and the skin under my nose dried out, and have been mildly dry ever since.
After all this I still had the acne, which was completely wrecking me emotionally. I thought if I cured the acne my mental health would get better. I went to an acupuncturist who also did Chinese herbs. After about 6 months my skin was still very oily but I was 90% free of acne. The Chinese lady who was treating me was brilliant, but she moved too far away for me to travel to keep seeing her. Thought I’d give the treatment a break and see if my skin stayed clear, but my acne came back just as severe as before.
At this point I did a huge amount of Googling and came across a number of herbal supplements that are supposed to be good at treating acne. I found gotu kola particularly helpful and ended up taking twice the amount recommended on the bottle. Worked it out to be 1000mg a day, which is pretty mental. I cycled this with neem and holy basil for a year, more or less. My skin was 99% clear at this point. Having been through years of isolation, dealt with suicidal thoughts and a failed attempt, I felt I was ready to re-joint the world of the living. Got a job, tried to ease myself back into normal life.
In Spring of 2017, just over a year and a half after taking accutane, all of my symptoms returned. Stopped taking herbs, acne is greatly reduced these days. Suspect that’s down to age. In a very short time period, both of my testicles shrank. I would say the left one is about a third of its former size and the right one is around half. I tried to ignore it for a few months but all these symptoms were pretty constant so I took myself off to a doctor. He didn’t believe there was anything wrong with me, given my history of mental health issues, but sent me for blood tests and a testicular ultrasound anyway. Blood test results were as above, and didn’t explain my symptoms. Testicular ultrasound revealed a very large left sided varicocele and significant shrinkage: Both of my testicles are below the minimum average size now. Over the next few months I had these weird blue spider veins appear on my penis. Also sought help from a therapist, which has been incredibly helpful. Over the last year I’ve gone from thinking about suicide all the time to feeling the happiest I’ve felt since I was a kid, despite all this. Earlier this year I finally had open surgery to tie off the varicocele, which was only partially successful. Still intend to get rid of it completely to rule it out as the cause of all this. Anyway, came to the conclusion that what I am experiencing is far beyond a normal varicocele and I don’t think it’s responsible for my problems. Especially considering the way a varicocele causes problems is by lowering testosterone, whereas mine is really high.
Found out all of the supplements I was taking can mess with your hormones, got very worried. Found a bunch of syndromes and conditions that might explain my conditions, but nothing really stuck. Eventually I came across someone with almost the exact same symptoms, who said they appeared soon after taking accutane. Found a post-accutane thread on an acne forum and worked my way here. Soon discovered that all of the herbal supplements I was taking have some kind of 5-aplha-reductase inhibiting properties and are used in treating hair loss as well as acne. Spent a while feeling fairly doomed and that suicide was inevitable but eventually came to the conclusion that this wasn’t gonna help me.
Before all this I was very interested in the placebo effect and read quite a lot about it. It’s very real and plays a role in most treatments. On the flip side, the nocebo effect is also real. Before joining here I went through a load of posts where people start with “this isn’t going to work, nothing can help me.” The reason treatments are less effective when you think like this are because of the nocebo effect. So yeah, as someone who has dealt with a lifetime of mental health issues, doing something about them is the foundation to build on in my opinion. Positivity and optimism are so important, as difficult as they may be. Not being able to have good sex for a while is shit, and I’ve lost one of the few things I wasn’t self-conscious about. I spent a while thinking my life was over, but to be honest lads, my life consists of more than a cock and balls and I realise I’m lucky compared to the obstacles some of you face. I’m determined to recover, whatever happens, however long it takes, though, and I know for certain that I will. I’m lucky enough to be in a position where I can still live my life in the meantime, so that’s what I’m gonna do.
The weird part of the story, that I don’t understand, is that literally only my sexual function has been affected. I guess I’m still going through the tail end of puberty, as you would expect for someone of my age. My facial hair is still thickening (it’s thicker than most of my friends’), my chest hair is still spreading. I can still build muscle and have no other problems. Any ideas about this? An endocrinologist suggested partial testosterone resistance, but this is a genetic condition that causes undervirilisation, which I don’t have in any capacity. Also, if it was genetic, presumably I would’ve had it my whole life? This is what contributed to my suspicion that somewhere along the way I have acquired some kind of epigenetic testosterone resistance or 5-AR deficiency. Also read that a varicocele can affect androgen receptors and lower DHT but all of this comes from one or two ambiguous studies done in the 80’s. I’ve not come across a single person who has the same symptoms as me from just a varicocele. I think that it might be a number of different things causing the problem in my case.
Sorry for the long read. I truly wish all of you guys the very best and a well deserved recovery.
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