My story, 1 year

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)?

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?)

What is your current age, height, weight?
28, 170cm, 56kg

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.)?
1 mg/day for 1 year

What condition was being treated with the drug?
Androgenetic Alopecia

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

Date when you started the drug?
October, 1st, 2020

Date when you quit the drug?
Novemeber 2nd, 2021

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

How long into your usage did you notice the onset of side effects?
11th month

What side effects did you experience that have yet to resolve since discontinuation?
Testicles constantly moving, pain at the tip of penis.

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.

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

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

[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[ ] 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

[ ] 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
[ ] Lowered body temperature

[x] Other (please explain)
Testicles constantly moving/revolving.

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

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 had pre and post-drug blood tests, they all came out normal.

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.

I’m 28 years old and started taking finasteride due mild hair loss, mostly in my temples. I decided to undergo the treatment since the condition was making me depressed.

I did everything under medical supervision, sadly that wasn’t enough. The first 10 months were completely fine, I was really happy with the treatment, when examined, my dermatologist said my hair was getting thicker. My blood tests were also fine, I was just moving on with my life.

When I got to the 11th month, I started feeling discomfort on my right testicle,I didn’t pay too much attention to it because I thought it could be slighty hurt after I climbed a latter.

Sadly, as the days passed, I started feeling more discomfort, then the discomfort became pain, that’s when I started tapering off the pill. In around 2 weeks I had stopped it completely.

Around 2 days after completely stopping it the pain went away, but instead of going back to normal I developed a lot of crazy symptoms (sensitive bladder, perineum/prostate numbness, pain at the tip of my penis and my testicles started moving/revolving all day long). I didn’t experience any sexual/abnormal mental issues.

Most of the symptoms disappeard a few weeks later, but the constant testicle movement is still there after almost a year, also the pain at the tip of my penis still appears from time to time.

The good news is that it did improve a little over this year, some days it’s weaker, some days it’s stronger. I also noticed that at night I can barely feel it, and also when I’m relaxed. When I feel anxious it tends to get worse.

I honestly don’t know if I’m actually suffering from PFS or if it’s mostly related to my anxiety, but I am sure finasteride is directly realated to it.

I went to many doctors/specialists, had all the blood tests/MRIs and such, they didn’t find anything but a few dialated veins in my testicles.

I’m posting here to share my story and also in hopes to find someone with this same weird symptom that could give me an insight. Thank you.

Hi @GDE, and welcome to the forum! It seems like you don’t have a lot of the classic symptoms that people report, but it still sounds like a scary experience. I thought I’d clarify – what do you mean by “testicle movement”? Are your main symptoms related to pelvic pain?

Also - you might want to check out this thread – Looking for Brazilian members

Hello, thanks for the feedback.

Regarding the symptoms, my testicles are literally moving/revolving, it resembles a lava lamp. The closest thing I could find on the internet is something called “cremasteric reflex”, I believe whatever finasteride did, it might’ve caused some sort of nerve damage, is that possible?

So is it painful, or do the testicles just look different?

It seems like finasteride is capable of doing a lot of terrible stuff. Vascular changes and tissue changes have been reported, which could explain what you’re going through… If you haven’t already, you should check out this page:

However, at night it usually stops or gets very mild, and when I’m a sleepy state it tends to get weaker as well.

It’s not painful, just very uncomfortable. I felt pain while on the pill, but that disappeard as soon I stopped taking it. Sometimes they move up like when you stay too long in the pool, but mostly they just move in a “lava lamp motion”.

According to my andrologist, it is a normal reaction, but I know it’s not, my testicles weren’t like this before the finasteride situation.