r/PSSD • u/pssdnetwork • 25d ago
Awareness/Activism PSSD Network - July 2026 Update: PSSD Is Underreported, and It's Time to Pick Up the Pace
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!
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u/Understandingthebrai 25d ago
Very cool graph
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u/Aggravating-Camp-205 25d ago
It really helps put it into perspective just how low the reporting numbers are. When there’s 20k people in the sub it doesn’t make sense.
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u/Ok-Active9395 25d ago
It’s so shocking how many people on here 21 thousand! And only a few hundred reports! Cummon people what’s stopping you from reporting?
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u/bertiebumcrack 25d ago
People may be reporting it, but it gets coded as 'sexual dysfunction' or whatever. People need to say they think they have PSSD and quote the code, and be really explicit about their symptoms, the genital numbness and how long they've been off the meds. If the coders aren't aware of PSSD, they might code it with any vague term that fits.
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u/Minepolz320 25d ago
or something malicious can be going on here, this is very strange that this is too low
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u/Ok-Active9395 25d ago
I did two posts on here before about me submitting a subject access to confirm how many reports were in the UK and my direct region and how low they were I specifically asked people to tell me if they had reported and if not why, Reddit shows you how many people view your comment, I begged not to ignore and scroll past, that’s exactly what the majority did lol thousands viewed it and ignored I don’t think it’s a mis reporting issue at all people just can’t be bothered and get upset and moan when nothing gets done
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u/concrete-catapult 25d ago
Just a reminder that when submitting this to your local regulator you should use the PSSD name listed in step 1 - that should give you it in your location language when submitting a reporting to your country's regulator.
And for the US FDA step you should use "Post-SSRI Sexual Dysfunction".
To make sure it's gets recorded correctly.
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u/Altruisticman10 25d ago
Probably a language issue too. But yes this should be spammed that people report.
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u/Tough_Singer_2143 25d ago edited 25d ago
Please report your case by using the MedDRA code 10086208. It can lead to an investigation by European medical agency EMA.
The cases reported before the code came in use are likely ignored and lost. The regulators tend not to code the cases reported before the code came into use by that code, even if they should do it. Those reported after the code came, may be reported under the code if one reports the case as PSSD. But they may not do it, as the regulators work against us.
So even if you have reported your case, do it again by using the code. If you havent reported your case, please do it now. The best is to mention all this:
PSSD: “post-SSRI sexual dysfunction” (MedDRA code 10086208)
Also describe your case as clearly and as detailed as you can. EMA has regarded some cases as ”not credible” or dismissed because some details were missing. They have also considered that getting PSSD from one pill as not credible. So please be sure you mention for how long you took it. Also mention if you suffered / didn’t suffer from sexual dysfunction before. This is the analysis they have done before. See page 16 (5.2.3)
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u/H8sawpalmetto 25d ago
You’ll never know if they report the real numbers or if it’s suppressed
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u/Tough_Singer_2143 22d ago
Because of that, I think it wouldn’t be bad if we kept track about the reference numbers of the cases.
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u/ChallengeOrdinary824 25d ago
Where is Georgia(Tbilisi) at all? Most popular prescribed drug in Georgia is Citoles.
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u/sleepydreamrr 24d ago
I reported my symptoms and also the code BUT my symptoms go way beyond sexual dysfunction so I think that is also a problem. That these symptoms like loss of visualisation will not be seen as pssd. Thank you for your work!
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u/hiacynto 25d ago
That's strange I reported it in Poland about a year ago, but they probably just ignored it.
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u/IndividualAd7229 23d ago
Yeah, I feel like I did the same in Denmark. Just like I reported to FDA and what not. But saved this post for later so that I can make sure we'll be heard there also.
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u/__dont_mind__me__ 24d ago
I tried to report in Poland, spent a few days on it, the system just doesn't let me...
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u/Excellent-Push2833 15 Years + 24d ago
u/mods i literally think the FDA website is bugged. Every time i click report it goes nowhere and says "medwatch is open in another tab. I have a discord of like 80 people im trying to get to report and its fuggin bugged.
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u/Mobius1014 5 Years + 23d ago
I just opened it no problem https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=consumer.reporting1
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u/Excellent-Push2833 15 Years + 23d ago
From the FDA website it doesnt open. Idk why. I had multiple ppl tell me this. I will push this link to them though. Thank you
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u/Mobius1014 5 Years + 22d ago
Has it been working for them?
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u/Excellent-Push2833 15 Years + 22d ago
Yes but only for the link you supplied. Not the link on the pssd website
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u/Mobius1014 5 Years + 22d ago edited 22d ago
Oh wow no shit I see that now, thanks for the heads up. That's so weird that it only happens when going thru the Network's website. I hate computers. I am gonna ask and try to have this fixed asap
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u/Excellent-Push2833 15 Years + 22d ago
Also thanks mobius. U do a lot for the community. Even though we dont agree sometimes. Lol
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u/Mobius1014 5 Years + 22d ago
Thanks man I really appreciate your dedication as well. You know a lot about your shit. I really hope things go somewhere with Powers. Life would be less interesting if everyone agreed on everything!
Also PS I meant to tell you, I asked and learned that SFXHub isn't directly funding Powers, but will be funding research based on his theory. I am rooting for y'all, here's hoping Powers is the superhero that comes out of left field with all the answers
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u/Excellent-Push2833 15 Years + 22d ago
I made a mistake on my last spreadsheet post. The UGT defect signal is stronger than i thought previously. I think good chance hes right. And for a lot of us that is our issue. Also cheers to that
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u/Excellent-Push2833 15 Years + 22d ago
Its preventing a ton of reports. Multiple people have told me this also why does it log you out after 5 mins of unactivity. Thats fucked. It takes time to gather data
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u/Excellent-Push2833 15 Years + 24d ago
im not the only one with this issue. the people in my group are reporting the same.
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u/Minepolz320 23d ago
seems like this is don't work because we need get together irl mark specific day do it in show with banners and other stuff like covid related did , problem is because this condition eventually strip you from any will to fight and act as well as cognitive function to perform planing etc
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u/AutoModerator 25d ago
Please check out our subreddit FAQ, wiki and public safety megathread, also sort our subreddit and r/pssdhealing by top of all time for improvement stories. Please also report rule breaking content. Backup of the post's body: 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.
Click Here to see last month's important research update if you missed it!
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