Is this real?
It is the first question almost everyone asks. Here is what the published research, and the medicines regulators themselves, currently say — in plain language, with every source linked.
Three things we can say with confidence
The symptoms show up in the body, not just on the report form
Brain imaging and biomarker studies find measurable physical differences in affected patients — differences you can see on a scan, not only hear in a consultation.
Something is changing in how genes are switched on
A 2021 study found expression differences across thousands of genes, and animal work found distinct brain changes. Animals hold no expectations about a drug — which makes belief a poor explanation.
For every 100 side effects, about 5 are ever reported
Reporting a side effect is voluntary, and most people never do it — often because they do not know they can. So the official totals are a floor, not a count.
So what? When you read that a condition has “only” a few thousand reports, that number is the visible tip. It is also why the registry matters — every entry moves the floor up.
What the regulators have already accepted
These are not campaign claims. Each one is a change the medicines regulators required of the manufacturers.
FDA adds a persistence warning to finasteride labels
US labelling was updated to state that sexual side effects “may persist after discontinuation”.
EMA requires the same for antidepressants
SSRI and SNRI labels must state that sexual dysfunction may persist after stopping — the first formal recognition of PSSD.
FDA adds a suicidal ideation warning
Added to the Propecia label, 30 years after finasteride’s original approval and after mounting patient advocacy.
What has been counted so far
The awareness gap
Recognition, reporting and research depend on each other. When one link is thin, the whole chain stays weak — and patients and clinicians are both left without answers.
A patient describes symptoms
Persistent sexual, cognitive or emotional symptoms that continue after the medication was stopped.
The presentation is unfamiliar
These conditions are uncommon and are not yet a routine part of medical training, so they are easily missed.
No adverse event report is filed
A reaction is most likely to be reported once it is recognised. Many patients are also unaware that they can report directly themselves.
The evidence base stays thin
Regulators act on the reports they receive. With few on record, there is little signal to act on.
Little new guidance reaches clinicians
Fewer safety updates and less published guidance mean awareness stays low — and the cycle begins again.
The terms you will keep running into
- Adverse event report
- A formal note to a medicines regulator saying “this happened to me after taking this”. Anyone can file one — you do not need a doctor to do it for you.
- Pharmacovigilance
- The system that collects those reports and watches for patterns. FAERS and VigiBase are two of its databases.
- Gene expression
- Which genes are switched on or off, and how strongly. Your genes themselves do not change — but what they are doing can.
- Neurosteroids
- Hormones the brain makes itself, involved in mood, sleep and sexual function. Finasteride reduces one of the enzymes that produces them.
- Nocebo effect
- Symptoms caused by expecting harm. It is a real phenomenon — which is exactly why the animal studies matter, since animals hold no expectations.
Help move the floor up
Joining the registry and reporting through the official channel both add to the record — and the record is what regulators and researchers act on.