Possible PFS Mechanism Identified — Help Us Gather Patient Data
SIDEfxHUB presenter (Robb) summarizing Dr. Will Powers' Reddit-post theory
SIDEfxHUB - PFS & PSSD Patient Organisation · 6:42 (402s)2026-03-08
Presents Dr Will Powers’ theory
Key points by timestamp (paraphrased)
- 0:00–0:26Framing: "Dr. Will Powers... believes that he has uncovered a potential underlying mechanism for PFS," developed across Reddit posts plus patient testing.
- 0:26–1:07Three androgen pathways: (1) 5α-reductase → DHT; (2) glucuronidation → water-soluble excretion via bile/urine; (3) aromatization → estrogen.
- 1:13–1:37Pre-existing defect: PFS patients likely carry a defective glucuronidation pathway at baseline, compensated by the other two — "most patients probably live their lives not knowing."
- 1:37–2:12The crash mechanism: Finasteride blocks 5AR → two of three pathways blocked → possible "intracellular buildup of androgens... astronomically high whilst your blood serum levels are just as normal" → a breaking point causing PFS "in one subsection of patients."
- 2:15–2:28Methods behind theory: Whole genome sequencing, DUTCH testing, urine/blood testing.
- 2:32–3:10The ask: Powers requested community data to validate the pattern in a wider pool ahead of the April summit — three tests: (1) morning hormone panel incl. testosterone, (2) androstanediol glucuronide blood test, (3) DUTCH urine test.
- 4:00–4:54Strict protocol: Morning draw (8am–12pm, ideally before 11am); 12-hour fast; no sexual activity or hard exercise in the prior 12 hours — all of which "seriously affect your androgens."
- 5:07–5:42Stakes: "If this turns out to be an underlying mechanism of PFS for at least this subtype of patients, we could be headed towards some kind of treatment and some kind of cure" (presenter's words, flagged as hopeful not established).
- 6:07–6:16Data handling: Results anonymized, GDPR-compliant, sent to Powers for analysis.
Timestamps come from auto-captions and can be off by about five seconds.
Why it’s in the corpus
PFS mechanism theory; biomarker protocol; community data collection for summit
Transcript
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Related records
- VideoAbout Powers’ work
Possible PFS Mechanism Identified — Help Us Gather Patient Data
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