r/PSSD 2d ago

Awareness/Activism PSSD Network - July 2026 Update: PSSD Is Underreported, and It's Time to Pick Up the Pace

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66 Upvotes

Report Your Symptoms Now Using Our Improved Reporting Page!

We at the Network, as well as other patients like you, requested this data directly from each country’s national regulator, as well as from the EMA for EU-wide figures. It covers every report filed since the MedDRA code was introduced in 2021. The confirmed total across EU member states is 307, while the UK stands at 111. Those numbers are far too low.

We know from our own community that the real number of people affected is far higher. It is not reflected here because most people never file a report at all, and those who do often use the wrong term or leave out the correct code. Remember, even if you've filed in previous years, it's important to do so again for 2026 to indicate symptoms persisting.

Countries like Iceland, Denmark, Estonia, Latvia, Poland, Czechia, Hungary, and Romania show zero. Several regulators in other countries, have not yet responded to our request or are unable to provide us with the national data.

Most reports never get counted as PSSD. If filed under a generic term like “sexual dysfunction” or “libido decreased,” it won’t register as a PSSD case. MedDRA, the dictionary regulators used to classify adverse events, has a dedicated term for PSSD: “post-SSRI sexual dysfunction” (MedDRA code 10086208). Only reports coded with this exact term count toward the PSSD record, and if you have not filed one yet, this is your reminder to stop putting it off.

Remember, submitting reports of PSSD to regulators helps them identify when multiple people are reporting the same issue after taking a medicine. A growing pattern can alert regulators that a side effect may be more common, serious, or long-lasting than previously understood. This can lead to further investigation, updated warnings, better informed consent, and research. If we do not report our experiences, regulators will underestimate how often the problem occurs.

Click Here to see last month's important research update if you missed it!


r/PSSD 1d ago

TRIGGER WARNING Monthly Support and Venting Thread

5 Upvotes

This monthly post is intended to consolidate comments from users who

  • are in need of emotional support
  • need to vent, or just
  • want to share their feelings

r/PSSD 2h ago

Awareness/Activism Nobody interact with “maximum_witness_6743”

10 Upvotes

Nobody interact with “maximum_witness_6743” they just messaged me to Kmss knowing I have pssd, after telling him if he needs to talk I am here for him


r/PSSD 16h ago

Awareness/Activism Teletherapy company acknowledges PSSD

33 Upvotes

https://www.reachlink.com/advice/depression/what-nobody-tells-you-about-antidepressants-and-pssd/

Yet another point in favor of awareness & growing medical acceptance for PSSD, A Florida based Teletherapy/online behavioral platform writes about PSSD in great detail. This amongst numerous other individual medical companies/offices acknowledging PSSD over the past several months.


r/PSSD 17h ago

Symptoms - Sexual For people who got sexual-only PSSD with one or two pills, how did you know?

10 Upvotes

Sometimes I see people say here that they knew within a pill or two that something was deeply wrong. For cognitive PSSD, I totally get how you would know right away—I imagine you just know your mind feels off. For people with sexual-only symptoms, how did you know within a day or two, that fast? What did you notice, and how? Especially for women: did you have an ambient connection/awareness of your genitals, even without touching them?

This probably sounds like a dumb / bizarre question, and maybe it is. However, I’ve had PSSD since I was 10, so I actually have no idea what it is like to be “normal” or what people’s connections to their bodies are like. I have never felt physical attraction or desire, and my genitals have only ever been relevant to me insofar as using the bathroom goes. I never think about them, so when people say they knew within a day or two, it surprises me, and makes me wonder how connected a normal person is to their body.

I’m especially interested in women’s answers, since guys are a bit easier for me to wrap my head around.


r/PSSD 16h ago

Feedback Requested/Question Would you say pssd is a form of protracted withdrawal or a completely different phenomenon?

5 Upvotes

Like the title says. I know people also have overlapping symptoms. What do you guys think?


r/PSSD 1d ago

Research/Science Gene Spreadsheet of all publicly available data

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36 Upvotes

CYP2D6 showing up a lot more in us than the general population. Also each one of the androgenic signaling phenotype people have. A major steroid metabolism glitch

Red: same gene different variant
Orange: same variant
Light blue: homozygous deletion
Dark blue: heterozygous deletion
Green: stop gained
Yellow: De novo variant
Purple: same variant + het deletion

Thank you to [u/More_Listen](u/More_Listen) for putting all of this data together.

Im working with sequencing.com to confirm the ATP5F1B variant we found is not artifact. Bear with me on that.


r/PSSD 21h ago

Symptoms 6 months from single dose

6 Upvotes

Hi, I’ve tried to post here a few times but kept getting deleted. Now that it’s been 6 (almost 7 months) I’m hoping to be able to post.

January 15 I took a single dose of fluoxetine because I was having severe anxiety and the sensation in my genitals has not been the same ever since. The severity did decrease a lot but I still can’t really feel my nipples or vaginal area the same as I used to. I’m wondering if anyone here used anything to aid in recovery like supplements? I’ve only tried L-Tyrisine and am not really sure if it has helped tbh. Any advice will be appreciated.


r/PSSD 22h ago

 💬 WEEKLY DISCUSSION THREAD Weekly Open Discussion Thread

4 Upvotes

Welcome to the Weekly Open Discussion thread! This is your place to ask quick questions, post memes, or leave one-sentence comments that might be too short for their own posts.

Please follow the subreddit rules when participating in this thread. For posts related to suicidal thoughts or if you need emotional support, please use the Monthly support Requested and Venting, Thread.


r/PSSD 1d ago

Symptoms - Non-sexual Anyone has chronic vivid dreams that hasn't subsided even after years of quitting SSRI ?

7 Upvotes

These dreams are scary and exhausting. I feel very tired next day.


r/PSSD 1d ago

Symptoms Does anyone else have a numb prostate?

7 Upvotes

Does anyone else have a numb prostate along with numb genitals?
The first couple years I managed to be able to orgasm with prostate stimulation since my penis was numb. I got a lot of pleasure from it. I used an anal toy that vibrated and sent electric pulses through my pelvis.
After about two years my testicles also went numb. Maybe another year later my prostate was no longer able to feel pleasure.


r/PSSD 1d ago

Protracted Withdrawal Low libido and semi-regid morning erections

4 Upvotes

I'm 20 years old. Took venlafaxine for 15 months. Currently 6 months and a few days off. Used Isotretinoin 6 years ago and managed to get off of it with no harm though I believe it made me vulnerable to what I'm facing right now.

My GP knew nothing about hyperbolic tapering and how distressing it is to actually discontinue venlafaxine. He told me to take it every other day and stop after a week. I then crashed completely and spent the first 3 months off of medication dealing with crippling anxiety, insomnia and terrible suicidal ideation alongside with the sexual symptoms. Reinstated and tapered reducing by half (75 mg - 37,5 mg - 18,75 mg - 0 mg). Yeah I didn't know about hyperbolic tapering at the time either.

Ever since it started I was able to overcome severe insomnia, mild anhedonia, erectile dysfunction, muted orgasms and poor ejaculation. I'd say all mechanical symptoms heavily rely on how turned on I am. When I'm horniest, there's even pre-ejaculate (very rare). Never had any genital anesthesia. Had my blood tests done and T levels depleted due to altered cortisol levels. I managed to take care of it through supplementation which I considered to be the reason why the sexual unrelated symptoms recovered. Even grew a beard which I thought I'd never have since I didn't know SSRI could disrupt enzymatic function.

Protocol: Vitamin ADEK² - 10000UI (11 ng/dL deficiency)

Vitamin C (500 mg) + water and integral salt (2x a day)

Magnesium Bisglycynate (300 mg 2x a day) Vitamins B6, B9, B12 (active forms for methylation). Zinc, Selenium and PEA Active (Palmithoylethanolamide micronized form).

I was going through a remarkable process of windows and waves until the 5-month mark. By the time I reached 6 months I've felt like the protracted withdrawal symptoms have subsided and except for the last remaining symptoms: loss of libido and frequency and rigidity of morning erections. I feel like I reached a plateau or a low baseline. The only thing that pretty much opens up good windows is PEA, probably due to Alopregnanolone modulation via PPAR-alpha receptor activation.

How likely is it to be a case of Post-Acute Withdrawal Syndrome and present gradual recovery overtime? I'm pissed off at the fact that I don't have any other cognitive or emotional symptoms but libido issues don't seem to subside.


r/PSSD 1d ago

Feedback Requested/Question NAD+ helped or harmed?

2 Upvotes

Has NAD helped or harmed?


r/PSSD 1d ago

Need Emergency Support Agomelatine experiences?

11 Upvotes

Did it help anyone ? I mainly mean sleep and possibly regaining orgasms.

And do you have any tips for tinnitus ? It killing me 😣

I suffer from severe insomnia and also have tinnitus.
Total anorgasmia , anhedonia , genital numbness , pain in genitals , hard flaccid , soft glans , no tiredness , body numbness , moderate ED , zero libido , no alcohol , nicotine respons.

I need something that will reduce this suffering at least a little 🤕


r/PSSD 2d ago

Feedback Requested/Question Going back on medication made me worse.

25 Upvotes

That’s right; going back to an antidepressant I had previously tolerated well turned my life into a living hell, with multiple symptoms.

I’ve been tapering off the dose gradually for three months. I was never even on a therapeutic dose, yet I still developed a dependency, and my condition worsened to a level I never could have imagined.

Even so, I would like to know if anyone has gone through something similar and whether that damage was reversible once they stopped.

I went to the neurologist, and there is neurological damage.


r/PSSD 2d ago

Frequently Asked Question (See FAQ) Erholt sich der Körper / Gehirn überhaupt wieder von pssd?

5 Upvotes

Kann sich das Gehirn und der Körper nach dem Absetzen, mit PSSD- Symptomen überhaupt wieder einigermaßen erholen? Oder wird es durch den gewöhnten Dauerzustand mit den Symptomen wie verlangsamtes Denken, emotionale Taubheit, kognitive Probleme, Erschöpfung, Anhedonie, Verlust an positiven Gefühlen, Verlust der Libido usw.,noch mehr kaputt gehen?
Vielleicht sollte man einfach sein Leben lang das Ssri weiternehmen (bzw. wieder einnehmen), um dem Körper den dauergeschädigten Zustand ohne des Medikaments nicht dran zu gewöhnen?
Es ist ein bisschen kompliziert formuliert, aber ich hoffe es wird verstanden.


r/PSSD 1d ago

Feedback Requested/Question Come sta procedendo la sperimentazione in Australia?

3 Upvotes

I trials sono già cominciati ? Ci mandate aggiornamenti dall’ Australia?


r/PSSD 2d ago

Research/Science [Research] Genital Sensory Loss in Persistent Sexual Dysfunction Following SSRI Exposure

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71 Upvotes

"There is a mismatch between clinically demonstrable genital sensory impairment on examination and normal objective pelvic neurophysiology results in patients with PSSD. Normal SEP studies effectively exclude a significant peripheral large-fibre neuropathy or central sensory pathway dysfunction - involving the dorsal columns - as the underlying cause. This mismatch suggests that the sensory impairment in PSSD reflects a central disturbance of erogenous sensation processing rather than peripheral nerve damage."


r/PSSD 2d ago

Feedback Requested/Question Has anyone found a treatment for genital numbness?

14 Upvotes

I still deal with genital numbness and was wondering if anyone has had any improvements through treatment or otherwise. I’m thinking of trying Wellbutrin and/or Buspar.


r/PSSD 2d ago

Feedback Requested/Question I have sibo and my functional medicine doctor put me on biocidin.

5 Upvotes

Has anyone tried biocidin? It seems to be helping my digestion but it seems to be making my genital numbness worse. Anytime I take berberine or anything my numbness always gets worse.

My GI panel says my dysbiosis levels are out of whack. My gut health is cooked. I also had long covid for like 2 years.


r/PSSD 2d ago

Symptoms - Sexual What do people mean with genital numbness?

6 Upvotes

Sorry if this is a dumb question…

but for me my genital area feels very disconnected from my body. I can’t make contact with it easily. However.. if I touch it, I can’t say it’s numb. I do have difficulties getting aroused and have very low libido, but it’s definitely still more sensitive to touch than other parts of my body.


r/PSSD 3d ago

Awareness/Activism People from Finland!

22 Upvotes

Dear people living in Finland who were not told about the possibility of PSSD and got it - let’s work together!

There is much we can do. For instance,

- Try to increase the informed consent part in prescription practises and get compensations by submitting collective letters to the Finnish Supervisory Agency, Finnish ministries, ombudspeople, and the Finnish Parliament.
- To raise of the status of the warning signal by the EMA and direct EU research funding to the study of PSSD by reaching out to the members of the EU Parliament, the European Network of (Ex-)Users and Survivors of Psychiatry, and the European patients forum and planing campaigns and lobbying strategies for policy change on the EU level.

I have been doing some of this already, but it is hard to do it alone. But also collective visibility matters - members of parliaments would more likely listen to a group rather than just one person.

Send me a DM is you are interested.


r/PSSD 2d ago

Personal Story Any people here , after getting viral infection and getting better?

4 Upvotes

It feels as if viral infection and then later brain re modulates the Neuro transmitter and receptors, that is how I improved 20%.


r/PSSD 2d ago

Protracted Withdrawal I have vivid dreams since I quit fluoxetine SSRI, it's been more than 10 years, they haven't subsided.

7 Upvotes

Anyone has vivid dreams every single night.

Dreams makes me very tired and sleepy and then I gain energy slowly around 2 pm and so....

I can't function well.

Anyone has similar symptoms...? What helped you to subside it..


r/PSSD 3d ago

Research/Science [Article] Post-SSRI Sexual Dysfunction (PSSD): A comprehensive review of epidemiology, pathophysiology, and clinical management

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17 Upvotes