PFS support groups: where to find others

If you want to talk to people who understand, you can find others with post-finasteride syndrome (PFS) in our private WhatsApp groups, on the long-running PropeciaHelp forum and through the PFS Foundation’s patient matching. PFS can last after stopping finasteride or dutasteride, and a group can be a place where others already know what you mean.

The UK Propecia leaflet lists problems with erections, sex drive and ejaculation that persist “after discontinuation of treatment”. In a peer group, nobody needs that line explained.

So where can you find them, and how do you get the most from a group?

Where can I talk to other people with PFS?

There are three main places, and they suit different needs.

• Small private groups: our WhatsApp groups are four regional groups for PFS, PSSD and PAS, sorted by language and time zone. An admin approves every member.
• A searchable forum: PropeciaHelp calls itself “the longest-running discussion forum” for PFS. Volunteers who have PFS run it, and membership is for people whose side effects have persisted after stopping.
• One-to-one contact: the PFS Foundation, a US charity, has matched patients and family members with each other since 2016. You send its form to social@pfsfoundation.org.

There are also PFS groups on Facebook, such as the Post-Finasteride Syndrome group. Start with one place. You can read for weeks before you post anything.

How do I join the SIDEfxHUB WhatsApp groups?

You fill in our registry form, open the link in the email it sends, and ask to join the group for your region. An admin approves requests by hand, usually within a day.

No one screens you, and no diagnosis is needed. A made-up name is fine. The groups cover the UK and Ireland, Scandinavia, Benelux, France and Italy, and the US and Canada.

We no longer print invite links on public pages, because search engines keep copies. Running access through the registry keeps the groups closed to the public. Our guide to the groups explains each step.

In the groups, people mostly talk about what’s hard to say anywhere else. That covers sex, and also feeling flat, foggy or cut off from the people around you.

PFS is more than sexual problems. The 2022 diagnostic criteria say cognitive problems, depression and suicidal thoughts can occur even without sexual difficulties. Those are hard to explain to friends, and easier with people who already know.

Matt took finasteride for three years without problems. A few weeks after he stopped, he says, “I began to feel very emotionally numb.”

Watch this extract if you’re not sure anyone else feels the way you do. He describes the change from the inside.

Play video: Matt on feeling emotionally numb after finasteride (extract)

How do I use a forum or group well?

Pick the place by what you need that day. A forum is good for searching, since someone has probably asked your question before. A small group is better when you want to be heard by people who’ll still be there next week.

Some people find long forum threads heavy going on a bad day. Stories about the worst cases can feel like a forecast. They aren’t. Each post is one person’s experience, and nobody yet knows who will be affected, or whether it will ease.

Muting a group for a while is fine. So is taking a break from reading.

Trust the experience, and check the advice. People in groups know what PFS is like to live with, but they don’t know your body or your history. Treat any tip about supplements or other drugs as a question for your GP. A real study has a name and a link.

What can I do besides joining a group?

These medicines help many people. If you have side effects, that’s a decision for you and your prescriber. The Propecia leaflet says to stop and contact your doctor as soon as possible if you notice mood changes such as depression or suicidal thoughts.

Groups help most alongside a GP who knows what’s going on. Bring the medicine, dose and dates, and what changed, in your own words.

If you ever feel you can’t go on, call Samaritans on 116 123 in the UK, free, day or night. A group can listen, but it can’t keep you safe in a crisis.

Report it: it helps everyone

A doctor’s note helps you. A report to the medicines regulator helps everyone else: it is how patterns get noticed.

• No proof needed. A suspicion is enough, even years after stopping. Your doctor doesn’t have to agree.
• Where: the Yellow Card scheme in the UK, MedWatch in the US.
• Use the right words. If symptoms continued after stopping, write Post 5-alpha-reductase inhibitor syndrome (MedDRA 10082430).

Our reporting guide walks you through it

What else do people ask?

Do I need a diagnosis to join a PFS group? No. Our WhatsApp groups ask for no diagnosis and no proof. Many people join while they’re still working out what happened. If you’re unsure, start with I think I have PFS: what do I do?

Is there support for partners and family? Yes. The PFS Foundation’s matching is open to family members, and our article on talking to family and friends about PFS has ideas for what to say.

Are there groups for PSSD and PAS too? Yes. Our WhatsApp groups cover all three together. For antidepressants, see PSSD support groups.

Matt describes his change in his own words in the film. Pick one place this week, read for a while, and say hello when you’re ready. Our PFS page is there if you want the basics first.

Sources

1. Healy D, Bahrick A, Bak M and colleagues. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med 2022;33(1):65-76. Proposed criteria from expert agreement. Section 5: “Additional finasteride effects that can occur independently of any sexual difficulties” include cognitive impairment, depression and suicidality.
2. Organon. Propecia 1 mg film-coated tablets, patient leaflet, electronic Medicines Compendium (UK). Section 2: mood alterations; “stop taking Propecia and contact your doctor”. Section 4, frequency unknown: persistent erection, sex drive and ejaculation problems “after discontinuation of treatment”.
3. PropeciaHelp: “the longest-running discussion forum” for PFS, run by patient volunteers; membership “restricted to those experiencing persistent side effects”.
4. PFS Foundation. Support program connects PFS patients worldwide, 21 September 2016 (US).
5. SIDEfxHUB. WhatsApp groups: four regional groups, access through the registry, admin approval.
6. Moral Medicine, Matt’s film, 6 April 2026, embedded from 5:26 to 6:45.
7. GOV.UK. Report a problem with a medicine or medical device.
8. Samaritans, 116 123 (UK and Ireland).

Sources checked on 22 October 2026. AI-assisted writing and review, not clinical review.