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)?
Belgium
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?)
Google search
What is your current age, height, weight?
40yo, height 180cm, weight 60kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Accutane in my youth and finasteride as an adolescent
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1,25mg/day
What condition was being treated with the drug?
Hair loss
For how long did you take the drug (weeks/months/years)?
7 years
How old were you, and WHEN (date) did you start the drug?
24
How old were you when you quit, and WHEN (date) did you quit?
31
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Side effects crept up very slowly and became apparent in a relationship
What side effects did you experience that have yet to resolve since discontinuation?
Low libido, erectile dysfunction
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
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[x] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts
Physical
[x] 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
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] 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?
Tried many supplements to no avail. PDE5 inhibitors work for ED and dopamine releasing stimulants for libido/arousal
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)?
As with other PFS people, hormonal levels are in the normal range. Vitamine D (seems to be typical for PFS) and Androstenedione were below the normal range.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
As many others, i’ve been on the forum for many years, but never took the time to share my story.
In my youth, i took accutane for acne. I responded well and did not have any side effects at this time. In hindsight, i probably did have sexual side effects that i did not attribute to this drug.
Many years later, i was concerned about my hair loss. Started with minoxidil and later got a prescription for finasteride. I was informed about the possible side effects and was told they would resolve after quitting.
As to hair loss, I was a ‘good responder’. Low libido and erectile dysfunction slowly became apparent but i accepted this, as it was part of the deal and i could (supposedly) always quit later.
After seeing my dermatologist and telling her about the problem, I quit taking finasteride for a few weeks and restarted it as i would rather have hair and a low libido at that time. Eventually, i quit taking it after realising it was PFS. I did not experience any crash.
Mental sides, brain/penis connection and genital sensitivity have improved. What gives me a glimmer of hope, is that dopamine releasing stimulants work as a quick fix for libido, although it is not sustainable and might even be harmful. I do believe it could help to understand the syndrome, as dopamine plays an important role in day time erections, libido, focus (brain fog) and depression.