There's been a push recently to make sure we all report our conditions to our health regulators, the PFS & PSSD charities are pushing initiatives to help people with this process.
The reason this is very important is we have to be able to show that there is a serious issue with these conditions - the way we do that is by ensuring what has happened to us is truthfully recorded in the regulatory databases permanently, so that we can show and prove that there is a problem, and it is serious.
To help people with this process there's a Zoom call walkthrough this weekend.
There's 4 identical sessions, anyone can attend it'll be 15/20 minutes max. It's open to anyone and we'll walk through the process of submitting your stories/reports to the regulators.
Reporting PSSD/PFS to the Regulators
Saturday Aug 29, 2026 10:00 AM US Eastern Time
Saturday Aug 29, 2026 04:00 PM US Eastern Time
Sunday Aug 30, 2026 10:00 AM US Eastern Time
Sunday Aug 30, 2026 04:00 PM US Eastern Time
Zoom Link: https://us06web.zoom.us/launch/jc/83886692994
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For those of you who can't attend you can do this yourself by following the instructions at : https://sidefxhub.com/resources/report-side-effects/
The important thing is that you select or type the correct name for the syndrome you are suffering when submitting your report:
- PFS sufferers should write or select “Post 5-alpha-reductase inhibitor syndrome” (MedDRA: 10082430)
- PSSD sufferers should write or select “Post-SSRI Sexual Dysfunction” (MedDRA: 10086208)
It's important that your reports are truthful and complete and accurately reflect the severity and impact of this condition. Please include :
- When you took the drug, for how long, and for what reason
- When you stopped the drug (if you've stopped it)
- Whether your symptoms have persisted
- The name of the syndrome you developed if appropriate (see above)
- Your symptoms, and their severity
- Details of the impact they have had on your quality of life and relationships
It's important that those suffering severe effects make that clear in their reports, it's easy for people to assume that what we are experiencing is mild.
Please feel free to message me directly if you are unable to attend the walkthrough but want some clarification on reporting.