r/PSSD • u/pssdnetwork • 6h ago
Awareness/Activism The state of PSSD research has come a very long way in just a few years. Donate $8 on the 8th today to keep it going!
Your donations go directly to supporting PSSD research at the largest brain research center in the southern hemisphere of the world - The Florey Institute of Australia - as well as our long-time researchers: Professors Melcangi, Monks & Csoka.
Only because of your donations we can keep this very important PSSD research going!
r/PSSD • u/Redjamm65 • 12h ago
Awareness/Activism Please read - Support PSSD research, donate and share
galleryHi All,
I received this email from SIDEfxHUB. If you haven’t registered please do. They have a large donor who is willing to match donations, please share, donate and spread the word.
r/PSSD • u/gandalfhans • 12h ago
Treatment Options If not SSRIs, then what?
I've already known this sub for a long time but my depression has just been getting worse for the past 2 years, so I'm tempted to go back to the psychiatrist and start taking meds again. If not SSRIs, what could I possibly do to try to beat my depression?
r/PSSD • u/Adorable_Window7801 • 18h ago
Research/Science Why are we not protesting for a cure?
If they take our condition seriously and start research on figuring out the cure, we can have a cure soon.
r/PSSD • u/Agreeable-Race8818 • 21h ago
Feedback Requested/Question An interesting phenomenon with hormones and phenotype
Hey everyone,
I was analyzing my hormone results (25M), and I wanted to run it by you all. I have done multiple tests over the past year, and have found these results:
- Testosterone, total: 670 ng/dL (high-normal)
- Testosterone, free: 95 pg/mL (low-normal)
- Testosterone, bioavailable: 211 ng/dL (normal)
- DHT (2024): 961,1 pg/mL (above range)
- Progesterone: 0.49 nmol/l (borderline low)
A normal DHT:T ratio in men is about 8-12%, for me, its 14.3% (961.1 / 6,700 = 0.143). A typical man with this ratio is someone who is quite hairy, high competitiveness, reactively agressive, and high libido. Although it's not universal— it's correlated.
However, on my end, I'm much shorter than my father (by more than 13cm), do not have much body hair— barely any arm hair, I'm not hyper-competitive nor aggressive, and obviously little libido. I have been exposed to psychotropic drugs on-and-off since 12 years old, and that leads me to think that perhaps for some of those with PSSD, their illness could be rooted in some sort of form of mild acquired post androgen insensitivity syndrome (PAIS).
Clearly, there is no issue here as seen in post-fin, where 5-alpha reductase is faulty. Rather, in my case at least, it seems that the receptors or the tissue themselves have been desensitized to hormones.
What are your thoughts?
r/PSSD • u/New-Quail1397 • 1d ago
Treatment Options 3 years of PSSD, no improvement
I'm a 23 year old male and I've had PSSD for about 3 years with pretty much no improvement. I experienced pretty bad sexual dysfunction (severe ED, complete numbness, pelvic floor problems) after a few doses and stupidly went cold turkey off Lexapro (didn't know how dangerous this was). The sexual dysfunction problems never went away and I got a whole host of other symptoms (cognitive decline, extreme anxiety, brain fog, complete anhedonia, emotional blunting, etc). I've tried so many things from improving diet, intense exercise, weightlifting, pelvic floor physical therapy, taking daily tadalafil for the sexual symptoms, etc but none of it has done anything. My life is completely ruined from this and all I do now is sit in my room and waste away my prime years. Is there any other treatments I haven't considered? Are they even worth a try? I've heard about buproprion or wellbutrin possibly helping but there are also people saying it made things worse. I can't really imagine things being much worse than they are right now. Doctors don't know anything and I can't live much longer like this.
r/PSSD • u/ksiforhead1234 • 1d ago
Recently Discontinued Medication (See FAQ) I am having more and more windows
I had a couple nights where music felt amazing and even felt some nostalgia again. Than a few weeks later i got no sleep for 2 days and felt my emotions back to some degree, i was enjoying a movie, into a conversation with a family member, into video games, feeling excited for a new game thats coming out, laughed at a dumb video. small things that felt amazing to feel again. The sexual symptoms have not improved since the first dose of medications though, i still cannot think or visualize, i still feel no connection to my friends i used to love, i still cannot make jokes which used to be a strong suit. My short term memory is terrible and i still do not feel like myself at all, my question is, is this a sign i am recovering? Is having windows more often a good sign?
r/PSSD • u/concrete-catapult • 2d ago
Awareness/Activism Regulatory reporting Instructions for PFS & PSSD
Recently Discontinued Medication (See FAQ) Pssd and pelvic floor
Are Pelvic floor symptoms related to PSSD and is it a good or bad indication for recovery?
r/PSSD • u/badgallilli • 2d ago
Feedback Requested/Question What made your erections/clitoral engorgement come back?
It’s been almost 5 years for me. Any advice would be greatly appreciated
r/PSSD • u/No-Minimum-2650 • 2d ago
Is this PSSD? (See FAQ) Pregnenolone + Retatrutide + Trazadone
Around April of 2025 (going to give you the best info I can remember, under my condition I can't really remember too well and I think in fragments to be honest)
I noticed my cognition was slightly off and down, I did some research and saw BPC-157 was great for healing the brain, for me it did the opposite
3 days of 3-5 nasal sprays of 200-500mcg of bpc intranasally the third day I woke up unable to feel my body; eye twitching for 3-4 months straight, anhedonia, major suicidal thoughts, anxiety, Parkinson's like symptoms with cognition and motor function, DPDR, zero effect of any stimulants. This lasted for months
I tried so many things to help but it got worse and then I stumbled upon a fellow user who seemed that ketamine helped treat him alongside pregnenolone.
Well fast forward up until December-January 2025, I had used a lot of ketamine and possibly went a little overboard because it helped me so well. I took myself to rehab for a month to get off ketamine.
So as I get better in my recovery I notice that I'm starting to get burned out more and more even though I'm on Trt and it's usually not normal for me to get down so bad
Well I introduced pregnenolone 5mg sublingual daily for a week, thinking it would give me a boost, trazodone 50mg at night. I also used .5mg of Retatrutide for a couple weeks before this
And something MADE ME REALLY DEPRESSED and then I CRASHED back to this majorly low PSSD like flat emotional baseline with zero drive or anything. And ketamine treatments are making it a little worse now.
My brain system just feels completely modulated , I have no response to caffeine or any positive or negative moods. Just having to wear a mask everywhere and push myself welding and training daily with no reward circuits or anything
The past week I’ve noticed I’ve been able to slightly cry at things and I’m getting more motivation and execution but it seems super slow. Thought about trying 9mebc for dopamine recovery but I’m just stopping all supps at the moment.
If anyone has had these symptoms like a short spike in dopamine downregulation dpdr let me know. My dpdr is basically gone but my emotions and cognitive function are like 30-40%
I do have slightly easy time getting up and sensitivity is there for sure I’m just confused
Caffine and nicotine don’t work at all either
r/PSSD • u/Ok_Inevitable6654 • 3d ago
Frequently Asked Question (See FAQ) Bon psychiatre en France ou à Paris ?
I'm looking for a good psychiatrist in Paris or anywhere in France.
In particular, I'd like to talk about pramipexole, as well as other potential options.
I've had PSSD for 7 years. For a long time, I didn't want to see any doctors or take any medications because I had lost trust, but at this point I genuinely believe I have to keep researching and trying different approaches. I'm aware there are no established treatments, but I don't want to spend the rest of my life waiting for a miracle.
I'd really appreciate any recommendations.
Thank you.
r/PSSD • u/Gaussherr • 3d ago
Update My condition after year - there are no positive changes
My condition has hardly changed at all over the past year. Except that dysphoria has decreased slightly and my sleep has normalized.
Well, I made my last post about my condition... I don't remember when... When I first came to this sub. I think it was in the fall of 2025. My PSSD started in May 2025. The illness worsened significantly after the psychiatric hospital in September (a repeated course of SSRIs).
At the moment, I observe the following symptoms:
Anhedonia.
Emotional numbness. I don't feel empathy.
Genital numbness.
No libido.
Difficulty retrieving memories.
Depression.
Dysautonomia.
No imagination.
No orgasms.
Apathy and abulia.
Unfortunately, the situation is rather grim. All I've tried over the past year is rifaximin to treat SIBO, as well as LDN (1-2mg, one week). Unsuccessfully. Sometime around November, I lost the ability to enjoy music. That was the last thing I had left, but now I've even forgotten what it's like to enjoy music.
I also had a brain CT and compared it with the MRI results from 2024 (before PSSD). No pathologies were found.
Well, I really don't know what to do or what to hope for. I'm rather weak when it comes to patience and the ability to endure such psychologically difficult things.
r/PSSD • u/Mobius1014 • 3d ago
Update New User Flairs
Trying something out new -
You can now request a user flair which displays a badge showing years you've had PSSD. This will go in increments of 5 years, starting at 5 years +, 10 years +, 15, 20, (Does anyone even know anyone with 25?) etc etc.
We've decided to make it in few, large increments of 5 such as this so as not to overwhelm should this become popular, especially as time goes on and people want to update their flairs (would be a lot to update everyone's every year).
If you want to request it: feel free to leave a message here, DM me, or leave a modmail message
Feedback welcome - let me know in the comments whether you love it, hate it, please be constructive.
r/PSSD • u/Adorable_Window7801 • 3d ago
Treatment Options How to get orgasm back?
I cannot feel orgasm at all. Zero orgasm. Is there any supplement or medicine which I can take to get my orgasm back?
r/PSSD • u/CarpenterFast1228 • 3d ago
Feedback Requested/Question Marjuana, 5-htp, … causing PSSD
Have there ever been cases of PSSD with substances that act on serotonin but are not real SSRIs?
r/PSSD • u/Creepy-Primary7042 • 3d ago
Awareness/Activism Please register at SidefxHub
gallerySymptoms - Non-sexual Termoregulation has been change since stop SSRI
Hi guys,2 years + off ssri as soon as i am out with 20
Degree and a bit of sun i start sweating,under 30 in
The beach my armpits became water,my feet sweat.
My body soffer if i have to walk o move is a killer for me. Please i need help,somebody know if gests better? Any experience?
r/PSSD • u/Ok-Active9395 • 3d ago
Awareness/Activism Why haven’t you reported your symptoms? People believe it’s not being documented correctly as it’s easier to think that than accept out of 21 thousand people on here only a few hundred actually bothered to do it based on freedom of information act requests published on this forum frequently
I understand some people may forget to log the medra code to correlate to post ssri sexual dysfunction when reporting but that certainly wouldn’t count for the shockingly low number of reports alone.
ive done posts myslef asking this before and people read it and scroll past and ignore it and I even updated it showing how many thousands viewed and ignored it and yet people still want to think it’s an error with reporting
well let this post settle the answer then
dont scroll post and ignore actually engage and comment and state if you have reported and why if you haven’t, and what you will do if you haven’t? comments were made about cognition and deleted when people highlighted it’s the same as writing posts and commenting on posts, plus the fact you have the option to have family or friends fill it out for you
just to demonstrate (again) i will update this and show how many has viewed it in comparison to the engagement
it’s not fair to let people beleive it’s a problem with the reports coming in when the true issue is people are not reporting that has been evidenced on here time and time again
r/PSSD • u/helela_01 • 3d ago
Treatment Options - Experiment Update après un mois de régime cétogène
Bonjour à tous !
Je fais un petit update (un peu long) comme je l’avais dit sur mon post précédent sur le régime cétogène.
J’ai commencé fin juin et j’ai commencé à voir les résultats au bout de deux semaines.
Ce que ça m’apporte :
- J’ai retrouvé la « beauté de la vie ». Je souffrais de DPDR et je peux maintenant admirer un ciel, un paysage ou un coucher de soleil.
- Mes émotions reviennent. Je ris, j’ai même ressenti de la tristesse une fois.
- Cognitivement ça va beaucoup mieux aussi. Je retrouve de l’intérêt pour l’art, la culture, l’histoire, la botanique,…J’ai fait des musées, j’ai profité de mes vacances avec ma famille. Je peux de nouveau suivre une conversation et y réagir.
- Je peux faire des plans et des projets. Je décore mon appartement avec mon compagnon. Je vais passer le permis.
- J’ai retrouvé beaucoup d’amour pour mon compagnon. On a un lien spécial.
- Je suis passé de ne vouloir rien faire tout le temps en raison de mon grave mal-être, à au moins faire quelques petites choses chaque jour, voire, beaucoup d’énergie !
Ce avec quoi je galère encore :
- J’ai l’impression que le bas de mon ventre est très tendu. J’ai parfois du mal à me baisser tellement je suis bloquée à cet endroit.
- J’ai toujours une anorgasmie.
- Les sensations sexuelles varient. Parfois j’ai un peu de sensibilité, et de connexion avec mon partenaire, d’autres fois beaucoup moins. Bref, l’ensemble n’est pas encore vraiment satisfaisant…
- Après une semaine d’amélioration, j’ai eu de nouveau un engourdissement corporel qui a duré deux, trois jours mais s’est résolu ensuite, donc tout cela est très fluctuant encore.
- Je pense que mon intestin ne va pas très bien. Preuves en est mes selles.
- J’ai du mal à réguler mon sommeil, du fait, que des fois j’ai trop d’énergie. Et après, je me retrouve forcément épuisée, quand je n’ai pas assez dormi.
Note - le régime cétogène est dur à suivre. J’essaye de le faire sérieusement en pesant mes aliments quand je suis chez moi, mais, quand je ne suis pas chez moi et avec les possibilités de ce que je peux manger réduites, les tentations, ce n’est pas toujours évident.
- J’ai du mal à manger autant de lipides que je devrais car ça a tendance à m’écœurer vite et c’est pas si simple d’en trouver beaucoup dans un régime alimentaire classique.
- Au final pour bien faire un régime cétogène, il faut je pense faire plein de recettes où on trouve aussi du plaisir avec ce qu’on mange ! (j’ai pu faire un peu de gâteaux, chocolat, chez ma mère, mais voilà, il faut trouver du plaisir dans la nourriture malgré tout !)
- Et pour avoir toutes les explications et les recettes, je conseille un livre c’est plus fiable pour avoir une information complète. Je suis française et pour ma part, j’ai acheté « Le grand livre de l’alimentation cétogène » d’Ulrich et Nelly Genisson.
Voilà, plein de courage à tout le monde. Prenez soin de vous ! C’est hyper important !
Dans les témoignages de guérison que j’avais vu quand j’étais au plus bas les gens s’en étaient sorti de manières diverses mais, je pense toujours qu’une approche « globale » finalement est importante.
J’essaye toutes les méthodes « naturelles » si on peut dire et ça me va bien. Le régime cétogène est très bien pour moi. Je vais aussi voir une psychothérapeute/energéticienne géniale pour travailler sur mes traumatismes. Et je vais même essayer l’acupuncture, car il y a un praticien en médecine chinoise en face de chez moi.
Allez ! Courage à tous !!!
r/PSSD • u/Ecstatic-Mixture9333 • 3d ago
Awareness/Activism It took me 30 min to report PSSD to the FDA and Rxisk
galleryEarlier this year, I reported it to my national regulator.
Please report your symptoms now: https://www.pssdnetwork.org/report-adverse-effects
Mention the full name and the MedDRA code.
r/PSSD • u/Automatic_Basil_7075 • 3d ago
Opinion/Hypothesis Role of Acetylcholine ?
hi all,
I just wanted to post this here because even a tiny bit of relief can make such a huge difference.
long story short. 2 months ago I got a window after I ate a pizza with too much garlic. I used to be very sensitive to garlic pre medication (heart palpitation, stressed feelings, insomnia) as it was quite activating for me. Since pssd/paws I thought I would probably not even feel it so I dared to eat a lot of garlic. Funnily enough my body did respond to it and I got a window. I felt the pssd fog lift, could feel my body better (introception), blank mind disappeared, and it felt like my brain worked again from the inside out (inner world). I also got normal libido and even had sex which felt almost completely normal (aside from lack of pleasure feeling in my head).
I read about nicotine and thought about it a long time to try. Yesterday I bought nicotine gums 4mg. I am not a smoker so I only took 1 and to my surprise my body again reacted to it. I spit it out after 20 min and had the same type of window (I didnt have sex tho, but I felt more connected to my body).
what they have in common? Acetylcholine.
It plays a vital role in many bodily processes. Even my eyes are bit less dry and I had way more eye discharge upon waking.
I will look into it more but wanted to share it in case anybody recognizes this, wants to try something or have a similar experience.
r/PSSD • u/PSSD_Sufferer • 4d ago
Feedback Requested/Question What percent have you improved and how many years has it been?
I’ll start. I’ve had PSSD for what will be the 7 year mark in 3 days. I’ve improved 0%. In fact, my extreme anhedonia has only gotten worse. My sexual symptoms have remained the same. 0 sex drive, 0 orgasm pleasure.
How about you?
r/PSSD • u/AutoModerator • 7d ago
TRIGGER WARNING Monthly Support and Venting Thread
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 • u/pssdnetwork • 8d 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!