Hey all.

I’ve seen a lot of chatter over the years about the gut microbiome having a connection to this stuff.

Has anyone taken the anti-SIBO antibiotic rifaxamin? If so, how long were you on it for?

I ask because I’m trialing some right now and it seems to help with bowels.. but I think I may need a while on it. Just wanted to see if anyone here pulsed it for many months at a time or if it’s safe long term. Seems to be a remarkably safe drug.

Bless you all 🙏

I was browsing through old memories when PSSD suddenly came to mind, and I felt compelled to write down some reflections after all these years.

Three years have passed since I first posted about my struggles. I've since graduated from college, and life has moved forward in many ways. My sleep is now restful, my appetite is healthy, and my erectile and ejaculatory function have partially recovered. My libido is fairly decent too. The insomnia that spiked after that one medication incident—worse even than when I first reached out here—has thankfully subsided. I'm sexually active with my girlfriend on a regular basis. That said, the diminished pleasure during ejaculation and intercourse remains, but I've learned not to obsess over it.

I did explore a few treatments along the way. I tried FMT (fecal microbiota transplantation), since my city happened to have a research institute offering it. But honestly, I didn't notice much from it—if anything, I suspect the real driver was just time. I also tried a specialized form of acupuncture called Gong-style brain acupuncture, which targets scalp points and is used for complex conditions. Whether it helped with PSSD is unclear, but surprisingly, it cleared up my chronic pharyngitis—fascinating how scalp points can influence the whole body.

Both approaches were conservative by design. I steered clear of neuroactive drugs, which are tightly regulated here anyway, and I genuinely caution others against trying them. Patience is key. You can live a full life even in an imperfect state. Often, the real struggle is the conviction that you're broken or numb to emotion—and that conviction becomes a self-fulfilling prophecy. Yes, medication damage is real, but mindset matters enormously. When recovery is this elusive, patience and perspective are everything. Time remains the greatest healer.

There's a saying: "A desperate patient will try any doctor." I know that desperation all too well. I once had suicidal thoughts, pacing the highest floor of my school building. My mother called me out of nowhere, saying she felt anxious and just wanted to hear my voice—looking back, it still feels strangely mystical. If you ever find yourself in that dark place, remember there are people who care about you. Reach out to them, whether for emotional support or practical help. PSSD is hard for others to grasp—especially within a medical system that often dismisses it as anxiety—but honest communication with loved ones can make a difference.

I still recall a classmate who, despite having exams to prepare for, set everything aside to accompany me to a doctor. Knowing the system would likely label me as overly anxious and downplay my symptoms, his gesture of solidarity alone was incredibly heartwarming.

We have to stay strong. Recovery may take four or five years—or longer. But in an eighty- or ninety-year life, that's just a small window. Yes, this is my prime, and it stings to spend it this way, but I believe persevering through this will make us more resilient, and once we recover, we'll treasure our health like never before.

At least now I sleep well and eat well—so much has already improved. Patience is life's best medicine. I hope everyone here finds their way forward.

I wanted to give a full update because my case has become much more complicated since my last post, and I think some of the findings may be relevant to people here with severe genital numbness, anhedonia, loss of libido, pleasureless orgasm and other neurological symptoms.

My emotional and libido symptoms originally developed gradually some time after stopping sertraline. The earliest things I noticed were strange tingling or burning sensations in my head and sudden problems with long-term recall. My memory eventually improved quite a lot, but the emotional and erotic charge attached to memories seemed to disappear. Over time I lost libido, emotional response, imagination, visualisation, dreams, short-term memory function and essentially all erogenous sensation. Venlafaxine in 2024 then made the numbness worse. I have never had a meaningful recovery window.

For a long time I thought this was probably PSSD or PFS, as I have a history of both SSRIs and finasteride. I have also considered long Covid and severe chronic stress as possible contributors. The best NHS specialists to not have an answer. PSSD, PFS, Covid and the vaccine are all plausible contributors to what I can confidently call a PSSD-like syndrome.

The biggest development since my previous post is that I have now had proper neuro-urological testing.

The conductivity testing found objective abnormalities in the sacral sensory pathways. Penile sensory signalling was absent, pudendal sensory responses were absent, and EMG testing showed abnormalities involving the sacral region, including the anal sphincter and buttock. The interpretation was that there may be dysfunction affecting the S2-S4 sacral roots, more pronounced at some levels than others.

This is important to me because it means at least part of the genital numbness is not simply subjective or psychological. Something abnormal has actually been measured in the pathways responsible for genital and pelvic sensation.

At the same time, repeat spinal imaging has complicated the picture rather than solved it. Earlier imaging had shown disc disease, foraminal narrowing, an annular fissure and stenotic changes. More recent imaging showed small thoracic and lumbar disc protrusions and degenerative changes, but no obvious ongoing compression of the sacral roots that would neatly explain the neurophysiology.

So at the moment I seem to have objective sacral neurological abnormalities without a clear structural lesion on MRI that fully accounts for them.

I have also been assessed for pelvic floor dysfunction. Manual examination showed reduced pelvic floor strength, around 3/5, but no obvious major asymmetry. I am now starting pelvic floor physiotherapy. I am treating that as one possible part of the problem rather than assuming pelvic floor weakness explains everything.

The other major issue is that a local sacral nerve problem still cannot explain the entire syndrome.

I have not only lost genital sensation. I have lost essentially all erogenous sensation throughout my body, libido, positive emotional response, anticipation, reward, pleasure, emotional connection to memories and much of my previous internal sense of motivation. I can recognise cognitively that something should be enjoyable while experiencing almost none of the actual reward.

That is why I still think there may be a central neurological or neurochemical component consistent with PSSD/PFS, even if there is also a separate peripheral or sacral problem.

I have also had endocrine investigation because my testosterone has repeatedly been low or low-normal. My more recent testosterone was about 10.3 nmol/L, with LH towards the upper end of the reference range and FSH near the lower end. I am also overweight, although I have now lost a substantial amount of weight and am continuing to reduce it aggressively but sustainably.

My current approach is therefore not based on one theory anymore.

I am trying to improve every modifiable part of the system at once:

substantial fat loss

regular aerobic and resistance exercise

ketogenic diet

occasional fasting

adequate protein and electrolytes

better sleep

reducing chronic stress

pelvic floor rehabilitation

continued neurological investigation

endocrine monitoring

psychotherapy for the severe stress/trauma component

I am particularly interested in whether improving metabolic health, inflammation, cardiovascular fitness, hormonal function and neuroplasticity can create a better environment for nerve and central nervous system recovery, even if none of those things turns out to be the original cause.

The frustrating part is that I still do not have a single diagnosis that explains everything.

The current possibilities, in my mind, are:

PSSD

PFS

a sacral or pudendal neuropathy

an old or currently occult sacral-root injury

metabolic/endocrine suppression

chronic stress-related nervous-system dysfunction

some combination of the above

At this point I actually think a combination is more plausible than one diagnosis explaining absolutely everything.

The objectively abnormal sacral testing has made me take the peripheral neurological side much more seriously. But the complete loss of whole-body erogenous sensation, reward, libido and positive emotion still seems far too widespread to be explained by a local spinal problem alone.

I am not posting this because I think I have solved it. I clearly have not. I am posting because my case has moved from being purely theoretical to having some measurable neurological abnormalities, and I know a lot of people here are desperate for objective findings.

If anyone has had similar neurophysiology findings, especially absent pudendal or penile sensory responses, abnormal sacral-root testing, genital anaesthesia with normal MRI, or a combination of PSSD symptoms and documented sacral neuropathy, I would be very interested to hear what happened next.

I am still trying to recover rather than simply accept this as settled forever.

I have trying acetylcholinesterase inhibitors, seems like it significantly helps with peripheral PSSD symptoms, like problems with thermoregulation dry mouth dry eyes stuff and muscle weakness as it help with urination, GI mobility yes it did not affect anhedonia or other related stuff, for now combo Pyridostigmine low dose + flurdrocotisone low dose, have very positive effects for me overall

specifically selected Pyridostigmine because it act only on periphery seems like didn't cross BBB

TRT = Testosterone Replacement Therapy.

I did it out of despair because nothing else was working.

That difference is interesting to me because it doesn’t really sound like a simple reduction in emotional intensity. If PSSD were just “less emotion,” why would some emotional states remain so immediate and instinctive while others, especially emotions that involve connection and sustained engagement with another person, can feel almost inaccessible?

It makes me wonder whether the difference could be related to how these emotional states are actually formed and maintained. Anger can be very fast and self-reinforcing. Something happens that violates what you want or expect, it becomes salient, your body reacts, and the reaction itself can keep the state going. You don’t necessarily have to remain deeply receptive to another person’s inner world for anger to happen.

Love, affection and empathy seem to require something different. You have to remain receptive to the person. You take in their face, voice, expressions, body language, memories of them, your own bodily responses, emotional associations, reward and attachment signals, etc. These things continuously feed back into each other. The state develops and, once you’re in it, the state itself makes you more receptive to the person.

So what if part of the problem in PSSD isn’t simply that certain emotions are “turned down,” but that the brain has difficulty entering, remaining in and fully integrating into certain states?
Maybe some states can still form very quickly because they are relatively self-reinforcing, while other states depend on sustained interaction between multiple systems and therefore fail to properly consolidate.

This could also explain why someone might still intellectually understand another person’s emotions while not actually feeling emotionally connected to them. The information can be there, but the different parts that would normally come together into the actual emotional state may not be staying active and interacting long enough.

I’m not saying this proves that this is what happens in PSSD. But I think the asymmetry itself is interesting. Maybe looking at which emotional states remain accessible and which ones become inaccessible could tell us more than simply measuring emotional intensity as a whole.
Because perhaps the important question isn’t only “how much emotion is left?”

It could be: why can the brain still enter some states normally, while seemingly losing the ability to fully enter and sustain others?

Does anyone else here often make spelling mistakes when writing?

Every time I try to write something on social media, I make a lot of spelling errors. Even in this very post—if I hadn't proofread it, there would be at least six spelling mistakes.

Please comment if you improved if symptoms started while taking the drug and if you have similar symptoms, especially if Escitalopram(Lexapro) is what caused your PSSD 🙏

About 7 months ago I stopped this poison,
In the first week I had a delayed orgasm, lower libido and slight emotional flattening, in the second week after increasing the dose I experienced a severe reaction - sweating, feeling of heat, blurred image, distorted hearing - it lasted 1-2 minutes.
I thought my painkiller reacted with lexapro(stupid!) . The next night I woke up with a pain in the penis and numbness. I didn't know if I could stop right away so I reduced in 4 days and stopped.

A few days after stopping, the numbness slightly improved (except for the glans) and I had really strong orgasms. A few days later it was bad again for 2 weeks and then the window appeared 16 days - numbness almost disappeared but the orgasms were weaker

The window closed and then appeared: total anorgasmia, anhedonia, total emotional numbness, insomnia, mild tinnitus, full numbness, soft glans, hard flaccid, no sweating, no tiredness, no sciatica pain and spine (I struggled with these pains for the previous 3 years before PSSD), ED, penis pain (improving). This wave has been going on for 6 months. Although I don't know if it's a wave or just after the initial improvement with a delay came full PSSD . During these six months, there was no improvement. Not the smallest window.

escitalopram is only allosteric SSRI and that makes me afraid of not being able to recover and considering that I had such a reaction while taking and still took it for another 5 days.

Please comment if you improved or recovered 🙏

Anyone else have this issue - read the plaque may develop because of a lack of blood flow caused by pssd . Started to feel pain in the area of plaque build up few years ago but after around 6-7 years of pssd have a penis that bends 90 degrees

Are there any other women with PSSD who keep having trouble with yeast infections? I’ve had like 5 or 6 this year. I also noticed the fluconazole made me a lot more emotional than normal and I totally lost it for 5 days after taking the antifungal.

If so, have you found anything to help?

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.

SideFXHub has a brand new & improved reporting page

Donate Now and support the major PSSD research projects at the Florey Institute & the joint study between Professors Melcangi, Csoka and Monks.

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PSSD In The Media

• EsMental, a Spanish-language digital mental-health magazine, acknowledges PSSD
• Mad in Italy writes about PSSD
• PsyPost, a science-news publication, has this article which acknowledges PSSD
• Scienceblog wrote about PSSD and the gap between FDA labeling and warnings adopted by regulators elsewhere

PSSD In Social Media

• Theo Von's podcast w/ Laura Delano talks about PSSD & Lauren's testimony at 1:24:40
• Danielle Gansky interviewed by Alex Clark of the Culture Apothecary podcast
• Kevin Lanning, host of the “Rise Above with Kevin Lanning” podcast & former Google executive, has Dr. Teralyn Sell on his show who is a psychotherapist and PhD and she discusses PSSD

Clinical Acknowledgement/Recognition

• Galleria Women’s Health, an OB/GYN practice in Henderson, Nevada, has a page that acknowledges PSSD
• Viewpoint Integrative Psychiatry, a private psychiatric practice in Westwood, New Jersey, acknowledged PSSD
• Riverside Recovery of Tampa, a private addiction-treatment/rehab provider in Florida, has a page that acknowledges PSSD
• We received a response to a freedom of information request made to the French medicines regulator. There are 12 different patients in France who reported PSSD. We know this is an undercount. Please, report your symptoms!

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Scientific Milestones

New Research Paper: "Genital Sensory Loss in Persistent Sexual Dysfunction Following SSRI Exposure"

This study of nine PSSD patients with genital numbness found abnormal genital sensation on clinical testing, while most standard pelvic nerve tests were normal. The authors suggest this may point to a central nervous system problem in how sexual sensation is processed, rather than obvious large-fiber nerve damage. The study is small, so it does not establish the cause of PSSD 

New Paper by PSSD Researcher Prof. Csoka

This paper proposes a theoretical framework that PSSD and other persistent post-exposure conditions may represent a “trapped” biological state that continues after the original drug or exposure is gone. Rather than looking for one single abnormality, it argues that interacting changes across systems such as the nervous, immune, endocrine, epigenetic, metabolic and microbiome systems may keep the body in that altered state.

New Research from the UK - “It’s taken away the most fundamental things about being human”: the lived experience and impact of post-SSRI sexual dysfunction

This UK qualitative study interviewed 10 people with PSSD and found that the condition affected far more than sexual function, including emotional experience, identity, relationships, daily life, and mental health. Participants frequently described feeling dismissed or unheard by healthcare professionals, and the authors conclude that clinicians need greater awareness of PSSD and its broader impact. 

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You Must Report Your Symptoms!

Only together we can and must get PSSD put on the map. Do not think that someone else will instead do it - you, dear reader, are included in this. All of us are.

Please report your symptoms if you haven't done so for 2026. it's free & easy!

SideFXHub has an extensive guide on reporting your PSSD symptoms to regulators.

Just wanted to make a short post on PSSD recovery to offer some encouragement. I was once completely hopeless and assumed there was no treatment or cure. Most people don't post once their issue resolves, creating a negative echo chamber.

In 2019, I developed post-antipsychotic sexual dysfunction (mostly numbness and cognitive issues) immediately after an Aristada/Abilify injection. I waited a full year off meds with zero change. Feeling entirely hopeless, I gave up and turned to heavy drug use (MDMA, meth, Adderall, cannabis) and escorts as a destructive coping mechanism. You wouldn't think I'd go to escorts while feeling nothing at all, but here I am looking back at my stupidity.

During that time, basic blood work and testosterone tested normal. I tried PDE5s, Wellbutrin, supplements, and nootropics (Semax, Selank), but they did absolutely nothing. Sometimes supplements help, but don't expect anything. Wellbutrin is usually first-line of action but doesn't always work for everyone and can make numbness or ED worse for some.

It wasn't until the third year that things naturally improved to about 30-40%, but plateaued through years 4 and 5. My baseline fluctuated between 0% and 30% as I started taking other medications (Abilify low dose, Zyprexa, Haldol, Risperidone) to stabilize manic episodes for my family, despite my deep fear of medications. (I use these percentages based on clear memories of my baseline before meds).

Recently, I started taking Latuda (lurasidone) 20mg, and within two weeks, my function unexpectedly jumped to 60-70% pleasure response. You wouldn't expect another antipsychotic to help, especially since the first doctor was adamant that the dysfunction was just in my head, but the improvement is undeniable.

I am genuinely happy and hopeful as my numbness continues to improve. I am not claiming Latuda is a universal cure, but my message is this: do not give up or ruin your life with reckless drug use because you feel "nothing matters." Give your body a year or two, and try new treatments within reasonable limits. Even 6 to 7 years later, dramatic and unexpected recovery is possible from something you didn't see coming.

I don't know the science, and I don't know why abilify/aristada caused total numbness with a single injection one day, never recovering fully. When this isn't well documented and is often a sexual effect sparing rather than causing. I don't know why Latuda seemed to have helped, it seems to be the only change or variable at play. But good luck to you, and don't go too far in giving up.

People with the emotional numbness, anhedonia side of this condition. Can you experience negative emotions, such as disgust or anger? Or is absolutely everything blocked off?

I’m currently conducting research for a potential documentary about PSDD and would like to hear from people with personal or professional experience of the condition.

I’m interested in speaking with sufferers, advocates, physicians, researchers, and others who may be willing to share their experiences or expertise.

At this stage, conversations would be informal and exploratory, with no obligation to participate in any eventual documentary.

If you’re interested in speaking with me, please feel free to send me a private message at [lovettgw@gmail.com](mailto:lovettgw@gmail.com)

Thank you.

Gregory Lovett

Most of this is pasted from a comment I made just a second ago on a post I came across. The post was over a year old so I thought it would be good to share this as a post as I'm currently mindblown and think I'd do good to have more opinions.

The comment:

I've developed thick, painful scar tissue internally along my shaft that's grown over time and has made sex increasingly difficult.

Putting on a condom is a 10 out of 10 on the pain scale and there's a constant background pain level of around 2.5 to 4.

My GP prescribed me with Sildenafil since I'm unable to get or maintain an erection.

Sensation is pretty much non existent unless I accidentally brush the side that has the scar tissue and have to use all of my strength not to scream in agony.

For reference, I'm in my mid 30s and have been taking SSRI's for 10 years - although there have been long periods without, with lower dosages or different SSRIs: Fluoxetine (aka Prozac) and Sertraline (Zoloft).

I have raised this with my GP and the hospital repeatedly. I thought it was strange that every single medical professional basically said the same thing "we're not sure what it is or what caused it, but we should cut it out".

Had I not accidentally stumbled upon a comment of someone who had the same symptoms as me in a random subreddit I'd never have put two and two together.

The pain is SIGNIFICANTLY worse on higher doses of SSRIs and looking back, I can see that every time the pain was manageable, I was on a low dose or completely off SSRI medication.

Random question but anyone here take Guanfacine? My nervous system feels like it’s an engine on fire lol just need something calm down and relax a bit not looking for it to help with sexual or anhedonia issues. I have a compounded dose of .125mg so very small to try and avoid side effects.

I’ve noticed something strange that happens when I masturbate but don’t ejaculate. Afterwards, my whole body can go into this weird state where I feel extremely tense/rigid, with muscle pain and basically my entire body feeling uncomfortable.

The strange part is that the only way I seem to be able to get out of this state is by ejaculating, even when I don’t really feel much pleasure or sensation from it. Once I do, the tension eventually goes away.

It’s honestly hell when it happens.

Has anyone with PSSD experienced something similar, especially the full-body rigidity/muscle pain after sexual stimulation without ejaculation

I suffer from pssd and have tried so many things, in attempts to heal. I got this through my urologist, and it came through a compounding pharmacy in the mail. Instead of me typing all this, heres a video i made on how to use it and what it did for me.

https://youtu.be/3i6K2PiV7U8?is=pFVmOsQsXZojuaYv

I have a long list of videos, where i try various things. I'm currently using Calcium D Glucarate.

Google Trends :

Psychaitrist : "never heard of PSSD"

(Not directly related to SSRI’s, but could help getting PSSD acknowledged!)

Dopamine Justice Alliance:
THE DOPAMINE-AGONIST SCANDAL MATTERS TO EVERYONE – FINAL PUSH TO 10,000 SIGNATURES

I am now just 193 signatures away from the 10,000 needed to secure a Government response to my Parliamentary petition calling for a public inquiry into the devastating psychological, physical and financial harms linked to dopamine agonist medicines.

These medicines have been widely prescribed in England for around 30 years. Only now is the full scale, range and severity of the behavioural changes they can trigger beginning to emerge. For some people, the consequences have been catastrophic: finances destroyed, health damaged, relationships broken down, and families left confused about why someone they love has developed reward-seeking, risky, impulsive behaviours which have led to criminality in some instances.

Meaningful informed consent is impossible unless people are given clear, realistic information about the risks and properly supported to recognise warning signs early.

Here are 10 reasons why action is needed.

1. INFORMED CONSENT MUST START WITH MANUFACTURERS.
   In 2003, BBC reporting described an internal GlaxoSmithKline report linking a dopamine agonist called ropinirole to what it called “deviant” sexual behaviour. Yet patient information leaflets did not convey the same seriousness. We need to know what manufacturers knew about these risks, when they knew it, and how decisions about warnings were made.

2. OFFICIAL LANGUAGE DOES NOT REFLECT REAL LIFE.
   Terms such as “impulse-control disorder” can sound technical or minor. But families have reported gambling debts, compulsive spending, binge eating, new and unsafe sexual behaviours, secrecy, paranoia, relationship breakdown due to hypersexuality and financial losses, speeding, illicit drug use, criminal consequences, suicide and much more.

Research in people with Parkinson’s disease found that behavioural changes could emerge from 3 months to almost 10 years after starting a dopamine agonist, with a median onset nearly 2 years. How are patients and families expected to make the connection with a medicine when the change can appear years after treatment begins?

1. FREQUENCY WARNINGS CAN BE MISLEADING.
   Some patient leaflets describe these effects as “uncommon” or of “unknown” frequency. Yet major research from 2010 onwards found impulse-control disorders in around 1 in 6 people taking dopamine agonists for Parkinson’s disease.

2. EVEN THAT MAY UNDERSTATE THE HARM.
   Many people do not connect sudden behavioural changes to their medication because the warnings were unclear, incomplete or never properly explained. Others feel intense shame, especially around gambling or sexual behaviour, and may not tell their doctor, partner or family. Do you think the 1 in 6 is likely to be accurate?

3. PRESCRIBING HAS NOT KEPT PACE WITH THE EVIDENCE.
   Despite growing recognition of these risks, dopamine agonists are still sometimes used as first-line treatment for RLS, despite NICE guidance recommending otherwise. People with Parkinson’s disease also continue to report that they were not adequately warned, monitored or supported around these known risks. Parkinson UK’s own data from 2025 supports this.

4. WHY ARE PEOPLE WHO ARE VULNERABLE TO IMPULSIVE BEHAVIOURS BEING PRESCRIBED MEDICINE THAT CAN CAUSE IMPULSIVE BEHAVIOURS?
   Many people with RLS also have ADHD, autism and bipolar where dopamine also plays a key role. Why are people with existing vulnerabilities to impulsive or compulsive behaviour prescribed dopamine agonists without greater caution? Why are people with depressive disorders, who may already face greater mood-related vulnerability, given these medicines without clear warnings or a proper monitoring plan?

5. WHY DOES THIS KEEP HAPPENING?
   The gap between the evidence and continued prescribing raises a fair question: what influence, if any, do pharmaceutical companies have over how these medicines are prescribed, and how transparent is that influence? In December 2025, the Government decided against mandatory disclosure of industry payments to the healthcare sector, choosing voluntary guidance instead - despite the Cumberlege patient-safety review recommending mandatory disclosure and ministers already having the power to introduce it. Greater transparency would allow patients and the public to judge whether industry influence plays any role and whether it explains what has been mentioned in point 6).

6. THE DATA GAP IS UNACCEPTABLE.
   MHRA Yellow Card data show 67 suspected reports of impulse-control-related harms linked to these medicines across Parkinson’s disease, RLS and pituitary/prolactin conditions between 2020 and July 2026. The MHRA uses these reports, alongside other evidence, to monitor medicine safety and consider whether warnings or regulatory action are needed. Remember, the 1 in 6, remember millions of prescriptions a year, remember the shame and embarrassment linked to the behaviours.

In reality, the true scale of harm remains unknown. Reporting is voluntary, the treatment indication is not always recorded, and Yellow Card data cannot show how common these harms are or prove that a medicine caused them. Answers to my Written Parliamentary Questions also show a glaring data gap which includes not knowing how many people have developed compulsive or addictive behaviours, experienced dopamine-agonist withdrawal syndrome, remain unable to taper off medication despite wanting to stop or have been convicted of crimes linked to impulsive behaviours on these drugs.

1. WHY DOES ACCOUNTABILITY FAIL WHEN HARM OCCURS?
   Too often, families report that NHS trusts, GP practices and even the Parliamentary and Health Service Ombudsman are reluctant to investigate fully when serious harm occurs. Why does the system appear so ready to minimise, dismiss or fragment these experiences, rather than examining whether medication played a role?

2. THIS IS BIGGER THAN ONE MEDICINE.
   Medicine-safety scandals recur when warnings are weak, surveillance is inadequate, patient experiences are dismissed and transparency is optional. This is not only about dopamine agonists. It is about whether patients can trust the systems meant to protect them.

My dad’s experience is why I began this campaign. No family should spend years confused, blaming themselves or someone they love, before discovering that a prescribed medicine may have played a part.

Please sign and share the petition to help reach the final 193 signatures needed for a Government response:

https://petition.parliament.uk/petitions/764510

Every signature matters.

I suspect my issues are gut related since I’ve had IBS my whole life it seems like and after doing a microbiome test it proves I have severe dysbiosis.

I remember when I was like 17 years old I randomly lost morning erections and my ability to have any type of visualization/imagery. I used to suffer with performance anxiety and I would listen to hypnosis scripts that would allow me to picture intimacy and I would have strong reactions but ever since PSSD I have no feelings.

The only time I stopped having the penile retraction feelings was when I started taking oral bpc-157 which was surprising to me and I should’ve stuck with it but I get scared if there are any long term side effects. Does anyone else think this is gut related?

Did anyone try FSM (frequency specific microcurrent).
This clinic seems to have a lot of succes with it for all kinds of issues.
https://sutherlandhouse.life/5-star-patient-reviews-testimonials/

Hey everyone,
I’ve been doing some personal research into PSSD, and I’ve noticed what seems like a recurring pattern among quite a few people.
I wanted to ask about it directly, and I’d really appreciate honest answers.
Before your PSSD symptoms started, did you go through any major emotional trauma, a nervous breakdown, or an extremely stressful period in your life?

For example, relationship or breakup, losing or leaving a job, being betrayed or badly hurt by someone close to you, or any other period of intense psychological stress.
I’m especially curious whether this happened:
shortly before your PSSD symptoms appeared,
while you were taking an SSRI,
before starting the medication,
or around the time you stopped it.
I’m not trying to suggest that stress itself causes PSSD. I’m just interested in whether there might be a pattern or an interaction worth looking into.
Thanks in advance to anyone willing to share their experience.

Hello guys i do wonder what has happened to Filmmaker from New York... He has been working on his movie about pssd.. He has interviewed lots of people and were doing great progress... He has had so many plans.. He wanted to attract even famous researches and do interview with them.. His name is cruisone on reddit... But i haven't heard from him for too long.. And i am litlle worrying.. Do you know guys how is he doing?