Dr. Kenneth Peters on Organising the First PFS/PSSD/PAS Medical Summit

In late April 2026, Dr. Kenneth Peters — Chair of Urology at Corewell Health William Beaumont University Hospital in Michigan — did something nobody in this field had done before: he organised a medical conference dedicated to Post-Finasteride Syndrome (PFS), Post-SSRI Sexual Dysfunction (PSSD) and Post-Accutane Syndrome (PAS) together, rather than treating them as three unrelated footnotes in three separate specialties.

Robb, from SIDEfxHUB, sat down with him at the event. Everything below is from that conversation unless stated otherwise. Quotes are from our own recording, lightly tidied for readability.

The patient who changed how he prescribes

Dr. Peters’ practice is built around people other clinicians have given up on. “I take care of things that nobody else wants to take care of,” he told us — chronic pelvic pain, voiding dysfunction, interstitial cystitis. Patients typically arrive having already seen five or six other doctors.

Roughly ten years ago, one of them was a young man who had taken finasteride.

“I didn’t know much about it, or even heard much about it… but what it did, because it was so profound in him, is it made me from that day on — I never prescribed finasteride again. Not even to my BPH patients.”

That is a striking position for a urologist. Finasteride at 5 mg is a standard treatment for benign prostatic hyperplasia, squarely within his own specialty. He stopped offering it entirely, on the strength of one patient, because — as he put it — “if this could happen to him, what could it do to other people?”

Four patients in two weeks

What turned a personal prescribing decision into a conference was a cluster. Within a period of less than two weeks, four young patients came to his clinic with what he describes as almost identical complaints — an exposure to one of these drugs, then an acute onset of genital numbness, anhedonia and brain fog.

One was after finasteride, in a patient who was himself a physician. One was PSSD. Two were post-Accutane: a pre-med student who had been an athlete and a straight-A student, and a woman in her early thirties whose symptoms began within a day or two of stopping the drug.

“It was like somebody telling me I needed to do something.”

He began investigating properly — sensory testing, neuromodulation, shockwave therapy, tracking outcomes with questionnaires. His team published a small case series, and corneal confocal microscopy in those patients showed nerve damage suggestive of small-fibre neuropathy.

What 1,100 survey responses showed

Then he and his director of research took it wider: an IRB-approved, anonymous online survey covering all three conditions, promoted through social media and patient advocacy groups.

“Within weeks, we got over 1,100 responses in all three categories.”

PSSD accounted for the most, with PFS close behind and several hundred PAS respondents. He describes suicidal ideation in the results as “ridiculously high.” His email was attached to the survey, and what came back through it is the part he returns to:

“I kept getting emails from family or parents asking if they could fill it out on behalf of their child who killed themselves.”

He had to tell them no — the survey was for patients themselves — and offer his condolences. That, he says, is what convinced him a meeting had to happen.

Some of that work has since been presented. Dr. Peters is first author on a conference abstract given to the Society for Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction (SUFU) in February 2026, titled “Post-Drug Syndrome: Urgent Need For Clinician Education and Research”, published in Neurourology and Urodynamics, Vol. 45, Issue S1. He told us a further paper had been submitted for publication that week, with two more close behind.

Everyone he invited said yes

He is candid that he came to this field as an outsider: a clinician, not a researcher in post-drug syndromes, who by his own account did not know 90% of the people who ended up attending. He scoured the literature for anyone who had published on these conditions, asked advocacy groups who else should be there, and sent out around 21 invitations to scientists, clinicians and advocacy organisations.

Every one of them accepted — from across the United States, Europe and Australia. Philanthropic funding covered some housing and food; attendees paid their own way there.

“The fact that all of them said yes just said to me what need there was out there to have a meeting like this.”

Among those in the room were Dr. Irwin Goldstein, whose imaging work has shaped how the physical effects of these conditions are understood, and Dr. Rachel Rubin, a urologist who spoke about what patients most need from a clinician — curiosity, and a willingness to say “I don’t know yet.” Patient advocates who have done years of unpaid work to get this far were there too, including SIDEfxHUB’s own Robb Dixon.

What happens next

He went in nervous. Everyone had their own discipline, their own view of whether the mechanism is peripheral or central, and he says he expected either a disaster or something remarkable.

The group is now writing up the Congress outcomes as an extended manuscript, with sections assigned and a follow-up meeting scheduled. His closing assessment is the part worth quoting in full:

“You can’t sit in this meeting for the last two and a half days and deny the post-drug syndromes. There is such clear evidence that there is a physiological thing going on — and it infuriates me when I hear the patient-blame side of this.”

He was equally clear about the limits: they have far more questions than answers, funding is the central obstacle, and nothing discussed at the meeting is a treatment recommendation. What he offers instead is that patients should know “there is a consortium of brilliant people who are trying to find answers.”

One gap is worth naming honestly: isotretinoin was the least represented of the three conditions at this first meeting. That is part of why SIDEfxHUB exists — to make sure PAS isn’t the condition nobody in the room is speaking for.

Our thanks

Our thanks go to Dr. Peters for organising the Summit, and to everyone who gave their time to be there. Robb also spoke to Dr. Will Powers at the same event about his genetic research — read that interview here. For an independent account of the science presented across the whole meeting, RxISK published a first-hand write-up by Dr. David Healy, who attended.

If you’re living with PFS, PSSD or PAS, the most useful thing you can do is make sure you’re counted: join our patient registry and report your side effects to your national regulator. A consensus statement, and every future summit like this one, is built on evidence — and evidence starts with people being willing to be recorded.