r/PSSD • • 21d ago

Awareness/Activism PSSD Network 26Q3 Update

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62 Upvotes

We at the PSSD Network are happy to share our Q3 Update

👉 Read the full update here: https://www.pssdnetwork.org/network/september-2026-quarterly-update

The image is a quick summary of the update, for a fast scan.

In this update we look back at what we've achieved in Q3, and what's expected in Q4. In it we cover:

  • The DAWN Study's major grant application and prep for launch
  • Dr. Monks × Dr. Melcangi's joint lab work beginning in Milan
  • Two PSSD papers from Prof. Melcangi's team headed for submission
  • More!

Sign up for the newsletter to keep up with important news! Join us in funding PSSD research


r/PSSD • • 20d ago

TRIGGER WARNING Monthly Support and Venting Thread

6 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 • • 7h ago

Awareness/Activism Eli Lilly knew about PSSD from the beginning in phase one trials and decided not to follow up in phase 2 trials.

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47 Upvotes

r/PSSD • • 7h ago

Awareness/Activism Daily Mail article on PSSD

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21 Upvotes

Big thanks & great job to our community member Katie for stepping up and sharing your story to the media to help bring more awareness!


r/PSSD • • 14h ago

Frequently Asked Question (See FAQ) Is there a WhatsApp group to discuss treatments or any possibility of reversing this condition?

5 Upvotes

The title says it all.


r/PSSD • • 1d ago

Awareness/Activism 196 properly reported PSSD cases in the European Union

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34 Upvotes

Everyone, please report your cases. We got this response to a freedom of information request and it’s obvious that most subscribers to this subreddit haven’t reported their cases. Also, the 196 number is for the European Economic Area, so the EU countries as well as Iceland, Norway and Liechtenstein.


r/PSSD • • 12h ago

Frequently Asked Question (See FAQ) Ladies only reply have you gotten an emg test done for pudenal nerve?

2 Upvotes

?


r/PSSD • • 23h ago

Frequently Asked Question (See FAQ) Doctor prescribed me amitriptyline for my some neurological and gut function because of some heavy inflammation from food poison. I am afraid to take it, it's been 10 years since I have pssd and I did have improved a little.

4 Upvotes

Shall I take amitriptyline 10 mg as prescribed by doctor?


r/PSSD • • 22h ago

Frequently Asked Question (See FAQ) An die Frauen: könnt ihr noch einen Orgasmus erreichen bei Selbstbefriedigung?

4 Upvotes

Auch wenn es schwer fällt und länger dauert, könnt ihr bei z.B. Anschauen von Pornos noch kommen?


r/PSSD • • 1d ago

Symptoms Is it embarrassing for you to speak about genital numbness at all?

12 Upvotes

I just don’t want people thinking about my pecker at all. I would only discuss it with my partner.


r/PSSD • • 1d ago

Symptoms - Sexual Pssd symptoms persisting

6 Upvotes

This is my first posting in this group, and I've been meaning to make a post about my pssd symptoms for awhile now. I was put on a low dose of both sertraline and fluxetine for ocd symptoms that I sustained from hitting my head in a car accident back in 2022. My libido was extremely high before I took antidepressants. Immediately after taking just one pill of each medication, my libido tanked entirely and disappeared almost overnight. I stayed on the meds for roughly five months and my libido still hasn't gone back to normal at all since I quit these medications a little over five years ago. Antidepressants messed with my libido, My sleep and made my anxiety way worse. They have made me into a shell of a person that I used to be. I was never forewarned that this could happen to me. I'm very angry and I feel jaded towards the pharmaceutical industry as well as towards the doctor that I had at that time. I have tried various supplements and herbal remedies to help my situation but they aren't helping me at all including Nac, magnesium, horny goat weed, gorontula, maca root, damiana and b 12. Nothing seems to be working. Two years ago I was put on propanalol to manage my anxiety and quetiapine for sleep, but both of these medications made my libido worse, so I recently quit both of them a few months ago in the hopes that my libido will return to its normal baseline. Surprisingly I am sleeping much better without taking the quetiapine nightly for sleep. I have been feeling extremely depressed because of what has happened to me from taking ssris, as well as from some things going on in my life currently and my doctor has tried pushing medication on me again to deal with the depressive symptoms. I am too afraid to take any psychiatric drugs for fear that they will ruin my libido further or cause more damage to my already impaired system. Does anyone have any suggestions or advice as to what I could possibly do to recover my libido?


r/PSSD • • 1d ago

Awareness/Activism WhatsApp Group Regional Country

8 Upvotes

Would you like to have some countries WhatsApp groups?


r/PSSD • • 1d ago

Symptoms People with genital numbness only for 6 years or more from one pill or so.. do you have great sex regardless?

14 Upvotes

I honestly don't think I'll ever get my sensibility back at this point, it'd be a miracle and I couldn't even explain it to write about it here to share the good news.. but anyway, this is the only symptom that remained all these years and it sucks but it's what it is. The will of God, like everything else.


r/PSSD • • 1d ago

Feedback Requested/Question Stomach medication experiences?

1 Upvotes

Hi there!

Wondering if anyone has any experiences with stomach medication? This condition is so poorly understood that I'm reluctant to introduce any new substances into my system that might potentially worsen it.

I've been prescribed vonoprozan for chronic gastritis (similar to a PPI). Has anyone taken it or anything similar? Would love to hear how that was for you. Trying get a sense for if stomach meds (if not vonoprozan itself) are linked even anecdotally with crashes.

Thanks for the help!


r/PSSD • • 2d ago

Feedback Requested/Question Is SERT inhibition one of the main mechanisms that causes PSSD?

14 Upvotes

DISCLAIMER:
I am not making any statements. By all means this is not a scientific claim. I am NOT presenting this as fact. I am not trying to share my opinion as fact, because it is not a fact.

I just want to know what you gus think on this


r/PSSD • • 2d ago

TRIGGER WARNING Another one lost rip

36 Upvotes

r/PSSD • • 2d ago

Update Getting better everyday

8 Upvotes

Ok so I had pssd for, idk 15 years I guess, good thing is I am young, 26 years old male. So, lately I've been pushing myself pretty hard. I do wim hof method, I quit smoking, I exercise everyday, I change my thoughts, I take care of my teeth, I read books etc. You know how hard it feels, even to brush your teeth lol. So, Im getting better, I usually feel much better, I even feel excited about things time to time. I mean, it isn't very comfy most of the time but it is something.

Btw I gone through psychosis for like 5 years and it's been few years ago, but I think I done most of the stuff in this year. Think of acceleration, road is how much I've made it, and I accelerate, so I cover more in a month, then i did in many other months. Another thing, it might sound pseudoscientific, but praying helped me a ton. Maybe it is placebo effect, maybe god is real, whatever, I would say try it, it helped me so much.

I also try experimental stuff, I hope it works. And the best thing you can do I believe, I seen this from a book called The Upward Spiral, try it, it is good. It says that, when we are in depression, we are tend to do things that will make us feel worse, and we don't do good things as much as often. So we are stuck in this downward spiral, and I believe that, many of the things you hate about pssd, might not be pssd alone. I mean if someone didn't had PSSD, yet came here thinking he has PSSD, Im sure he would get into depression too.

My libido etc is coming back too, lemme say that.

Also, uh, I know it is hard to read, so, sorry about that.

All of these are my personal experience, my story. Im not giving anybody advice, aight? I have to legally say that, I know it feels weird, but I gotta do it, otherwise my lawyer is gonna hang me from my feet lol.

So, good luck everyone. Peace..


r/PSSD • • 2d ago

Symptoms Feeling better late luteal/early period

6 Upvotes

Does anyone know why this is the case? Why am I able to feel more emotions/more positive during my late luteal/early period phase? Usually for well people it's the opposite that's one of the worst times. Does anyone feel like this?

Do your pssd symptoms ever wax and wane according to your period?


r/PSSD • • 2d ago

Feedback Requested/Question Mirtazapine vs Mianserin

3 Upvotes

We all know these are two distinct drugs, but they still have A LOT in common. But why is mianserin considered a safer option? Why do more people get PSSD from mirtazapine?


r/PSSD • • 2d ago

CRASH POSSIBLE GBL (recreational drug) temporarily reverses my 10-year PSSD an anhedonia

21 Upvotes

I’ve been suffering from PSSD for over 10 years after discontinuing SSRIs.

I’m currently medication-free since 2016. I can still orgasm, but I have virtually no libido, no sexual desire or arousal, and significant genital numbness. I also struggle with emotional anhedonia.

Recently, I experimented with GBL (gamma-butyrolactone), a recreational drug that is converted into GHB (gamma-hydroxybutyrate) in the body. GHB is a central nervous system depressant, commonly known as a party drug and sometimes used as a sex drug. Its effects are primarily associated with GABA-B receptor activity.

And to my absolute surprise, my PSSD symptoms temporarily disappeared.

For the first time in years, I experienced genuine sexual desire, intense arousal, restored genital sensitivity, and incredibly pleasurable orgasms.

And honestly, the effects go far beyond my sexual symptoms. It’s as if almost everything in my brain suddenly starts working the way it should.
My constant underlying tension disappears. My mind becomes calm, but not sedated or emotionally numb. Quite the opposite: I feel mentally clear, present, motivated, and genuinely alive.

My ADHD symptoms seem to improve dramatically. I can focus without forcing myself. Things that normally require enormous mental effort suddenly feel effortless. I feel motivated to do things, rather than constantly struggling to get myself started. My thoughts become clearer and more organized.

But the most remarkable difference is emotional.
My anhedonia seems to disappear completely.
I can actually experience pleasure, excitement, affection, warmth, and genuine happiness. I feel emotionally connected to people instead of detached from them.

Social interactions suddenly feel natural. I don’t experience that constant internal resistance, tension, or urge to withdraw. I feel comfortable being myself. I can express affection spontaneously, enjoy conversations, and experience a genuine sense of closeness.
Even my body feels different. That constant underlying physical tension seems to dissolve. I feel relaxed, open, and comfortable in my own skin.
And somehow, everything feels easier. Not because my circumstances have changed, but because my internal experience of life has changed.
It’s not just that I feel less depressed, less anxious, or less distracted. I actually feel things that are normally completely absent from my life.
Desire. Pleasure. Motivation. Connection. Emotional warmth. The ability to genuinely enjoy being alive.
The strangest part is how natural it all feels.
It’s almost as if a switch has been flipped and, for a few hours, I get access to a version of myself that normally feels completely out of reach.

I’m not suggesting that GBL actually cures any of these conditions. The effects are temporary and happen during intoxication. But the contrast with my normal baseline is so dramatic that I can’t help wondering what exactly is happening in my brain.

The effects were temporary, sometimes with a slight afterglow lasting a few hours, but never into the next day.

What fascinates me is that after more than a decade of PSSD, these functions apparently aren’t permanently lost. They can still be activated, at least temporarily.

I’m particularly interested in the possible involvement of GABA-B receptors, dopamine, and their interaction. I also have ADHD, which makes me wonder whether dopaminergic dysfunction could be part of the picture.

Has anyone experienced something similar? Are there any researchers or doctors who could help explain the possible neurobiological mechanisms behind this?
I’m not claiming this is a cure. I’m genuinely trying to understand what this response might tell us about PSSD.

Disclaimer: GBL is a recreational drug, also used as a party and sex drug. It can be extremely dangerous, particularly because small dosing errors can lead to overdose and respiratory depression. I’m not recommending anyone experiment with it. I’m sharing my experience purely because I believe the neurological response is worth investigating.u


r/PSSD • • 3d ago

Awareness/Activism Women's only discord group!

9 Upvotes

Hi ladies!!

I have set up a women's only Discord server as a safe, compassionate, and private space for us to talk openly, support one another, and connect!!
What to expect:
• A safe, respectful, and supportive space.
• Discussions focused on women's health, symptom management, and peer support.
•tracking ongoing studies and research
• Zero tolerance for spam, harassment, or invalidation
• and most importantly... HOPE! It can be difficult to see the light at the end of the tunnel, it's overwhelming, and exhausting to carry alone, But you don't have to carry it by yourself. This space exists to remind each other that there is hope, that recovery and healing stories exist, and that through shared strength, scientific understanding, and genuine community, we will get through this together.

How to join:
To ensure the space remains safe and women only, please send me a DM and I will share the Discord invite link with you directly!
Looking forward to connecting with all of you! 💕


r/PSSD • • 2d ago

Treatment Options Could E.Coli and systematic histamine be a big factor?

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0 Upvotes

Had a phone call with a specialist today, an email i sent to a clinic got forwared to her and she reached out.

She's dealt with many people with the feelings of anhedonia, pssd, despair and all them types of emotions.

And was very confident she'll be able to help me, as she's had many positive results from clients.

I've got a proper appointment tomorrow, so il find out the processof how it all works.

Has anyone done specialised tests link to all microbiomes and stuff?


r/PSSD • • 3d ago

Feedback Requested/Question Is SIBO a cause or downstream effect of PSSD?

1 Upvotes

Years after the SIBO theory was first brought up I wonder have we reached a conclusion on this?

Most people who have SIBO do not have PSSD like symptoms. But we have atleast 1 or 2 success stories I think.

For me I has confirmed methane SIBO 25ppm in August of last year, and but the month after that I got a huge window that lasted 4 months only.

What so you guys think ? It it a cause or a downstream effect?


r/PSSD • • 3d ago

Feedback Requested/Question Do people recover from adverse reaction?

9 Upvotes

Is it possible ? I can’t find recoveries from severe cases caused by adverse reaction.

Please comment if you recovered or improved.
Write what improved for you and how long it took to see improvements.


r/PSSD • • 3d ago

 💬 WEEKLY DISCUSSION THREAD Weekly Open Discussion Thread

2 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.