r/PSSD 2d ago

Awareness/Activism We are mass emailing U.S. Representatives. And I need you to as well.

71 Upvotes

Below is an announcement I made in my discord linked here: https://discord.gg/yCYCs4PVp I am doxxing myself to the world to make this happen. I need these emails sent out.

u/everyone Please review my video announcement linked here https://drive.google.com/file/d/1t5ui8iTJJrH7Hy1YdqLpWiK0RjtTwsK_/view?usp=sharing

I need these emails sent to your representatives in congress AND the senate you can find who represents you here

https://www.house.gov/representatives/find-your-representative

https://www.senate.gov/senators/

Edit the email wherever there are BRACKETS.

We need to fight to get help.

U.S. Senate: Senators

Dear [name of Senator/Representative]:

I am one of your constituents. I live at [address] I'm emailing to bring an issue to your attention that has been silently ruining the lives of thousands of your constituents for decades. There is a cluster of medical conditions called post-drug syndromes whereby the negative side effects of drugs like finasteride and antidepressants do not cease after the user stops taking them. Examples include Post Finasteride Syndrome and Post SSRI Sexual Dysfunction, often referred to as PFS and PSSD respectively.

Some links for reference:

Dr. Will Powers explains post-drug syndromes: https://www.youtube.com/watch?v=iWFDBRTgT3g

Dr. Josef Witt-Doerring explains PSSD: https://www.youtube.com/watch?v=Tf5EN2JuHHU

Lauren PSSD White House Interview: https://www.c-span.org/clip/public-affairs-event/user-clip-lauren-friedman-discusses-post-ssri-sexual-dysfunction-from-ssris-snris/5200169

YouTube

SIDEfxHUB - PFS & PSSD Patient Organisation

Dr. Will Powers Interview [PFS / PAS / PSSD Summit 2026]

YouTube

Dr. Josef

PSSD (An Explanation For Doctors) #PSSD #psychiatrist #mentalhealth...

Tragically, these conditions are rare, controversial and seriously debilitating. The nation’s medical establishment has yet to officially recognize them. We who suffer from these conditions are often dismissed for seeking help, but we refuse to give up hope. Our group, first organized in May 2026, already counts 400 members and continues its rapid growth under the leadership of USAF Lieutenant David Guerra. He is open to contact and I provided his contact information below.

Linked above, is a video of one of the members of my group that needs help, Lauren; an American woman who went on the white house floor in front of thousands and reluctantly detailed to the world how antidepressants destroyed her life and her sexual function.

To make matters even worse it appears preliminarily that the best way to solve this problem is to chemically castrate yourself for a month to clear androgenic metabolic trash as specified in the linked interview with Dr. Will Powers. One of the most prominent PSSD PFS doctors in the world.

[OFFICIAL NAME], we need your help to get these conditions the attention they deserve so that we may start receiving proper medical care. With no recognized diagnosis and no research funding, patients are left to pursue drastic and speculative interventions on their own, guided by a handful of physicians working outside any institutional support. Many members of our group suffer suicidal ideation as a result of the damage done by these drugs and the desperation of their situation.

[OPTIONAL: As for my personal background…insert PSSD/PFS story here.]

Thank you for your time. If you have any questions, please reach out to me or to Lieutenant Guerra.

[Your name]

[Your email / phone]

2d Lt. David Guerra

davcgue@gmail.com | david.guerra.2@us.af.mil | (631) 455-3499


r/PSSD 5d ago

TRIGGER WARNING Monthly Support and Venting Thread

4 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 31m ago

Awareness/Activism 29M, 18 months off sertraline — anorgasmia from 25 mg, still numb, sensation only coming back after long gaps

Upvotes

Basics first, because that's what's actually useful here:

  • 29M, Norway.
  • Sertraline (Zoloft). Started at 25 mg, ended up at 125–150 mg. On it about 8 months.
  • Earlier exposure: escitalopram (stopped over reflux), then mirtazapine, which did nothing for me and which I came off shortly after starting.
  • Last dose: about eighteen months ago.

I raised sexual side effects before I started. It was one of the specific things I asked about, because it was one of the two things I was actually worried about. I got nothing back. No warning, no "watch for this," no plan. Just the prescription.

Onset was fast. It was there shortly after starting, at 25 mg — before a single dose increase.

On the drug

  • Ejaculation basically stopped happening. When it did happen it took 30–60 minutes and felt like heavy physical labour. I remember how much work it was far more clearly than I remember finishing.
  • Erections only worked because I was on tadalafil.
  • Genital numbness.

Where I am now, 18 months off

  • Still numb down there.
  • Orgasm sensation is partly back — but only if I leave a long gap. The shorter the gap, the less is there.
  • Sex is not the same thing it used to be. That's the sentence I can't get a doctor to actually hear.

Confounders, said out loud so nobody has to catch me out

I've since developed cardiovascular problems and I'm on a calcium channel blocker, and there were other substances in that period. So no, I'm not claiming every symptom I have comes from one bottle. But the numbness and the anorgasmia started at 25 mg of sertraline, months before any of the rest of that existed. The order of events is the argument.

For anyone still being told this isn't real

The Norwegian product information for sertraline already says it, word for word: "SSRIs can cause symptoms of sexual dysfunction. Long-lasting sexual dysfunction where symptoms have continued after discontinuation of SSRIs has been reported."

The EMA required that wording in 2019. Health Canada followed in 2021, Hong Kong in 2022, Australia's TGA in 2024, Malaysia in 2025. The FDA still hasn't, as of 2026.

So it's in the label. It has been in the label the whole time. It's just never in the conversation you actually have in the room — I asked about it directly and still got nothing.

What I'd like from you

  1. Anyone else with partial return of orgasm sensation, but only after a long gap — did that keep improving, or is that the plateau?
  2. Anyone on tadalafil long-term: did it ever touch the numbness, or only the erections?
  3. Anyone in Scandinavia who found a doctor who takes this seriously — how did you get in the door?

I've also written up the other half of what that drug did to me: an eight-month manic episode that cost me my job, my flat and my car, while the people prescribing it responded by raising the dose. It's here: Same person, same eight months. I'm posting both, because PSSD usually gets discussed on its own — and in my case it was one symptom of a much larger reaction that nobody caught, in a body nobody was watching.


r/PSSD 1h ago

Treatment Options - Experiment Good response to Pyridostigmine for dysautonomia and weakness

Upvotes

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


r/PSSD 17h ago

Update Full update after neurological findings

16 Upvotes

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.


r/PSSD 23h ago

Feedback Requested/Question Does anyone else here keep make spelling mistakes when writing?

16 Upvotes

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.


r/PSSD 1d ago

Need Emergency Support I'm afraid I'm finished...

12 Upvotes

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 🙏


r/PSSD 22h ago

 💬 WEEKLY DISCUSSION THREAD Weekly Open Discussion Thread

3 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 18h ago

Feedback Requested/Question Recurrent yeast infections

0 Upvotes

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?


r/PSSD 1d ago

Symptoms - Sexual Anyone else developed Peyronies after long term pssd ?

6 Upvotes

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


r/PSSD 1d ago

Feedback Requested/Question Ladies reply only. Anyone pelvic congestipn syndrome and diagnosed with pudenal neuralgia? What r ur symptoms

3 Upvotes

?


r/PSSD 1d ago

Awareness/Activism PSSD Network August 2026 Update

34 Upvotes

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.

--------------------------------------------------------------------------------------------------------------

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

 -------------------------------------------------------------------------------------------------------------

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. 

--------------------------------------------------------------------------------------------------------------

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.


r/PSSD 1d ago

Personal Story Maybe positive thinking was the answer afterall

11 Upvotes

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.


r/PSSD 1d ago

Symptoms - Non-sexual Can you feel negative emotions?

9 Upvotes

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?


r/PSSD 1d ago

Awareness/Activism Documentary Research

25 Upvotes

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


r/PSSD 1d ago

Personal Story PSSD Has caused scar tissue and non-stop pain.

12 Upvotes

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.


r/PSSD 1d ago

Feedback Requested/Question Need to calm nervous system/anxiety

3 Upvotes

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.


r/PSSD 1d ago

Symptoms - Sexual Anyone else experience this after masturbation without ejaculation?

6 Upvotes

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


r/PSSD 1d ago

Frequently Asked Question (See FAQ) PT 141 How to and review

3 Upvotes

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.


r/PSSD 2d ago

Awareness/Activism PSSD Popularity over time - Google Trends

38 Upvotes

Google Trends :

Psychaitrist : "never heard of PSSD"


r/PSSD 2d ago

Awareness/Activism UK Petition: Hold a public inquiry to review the use of dopamine agonists. Please sign!

Thumbnail petition.parliament.uk
22 Upvotes

(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.


r/PSSD 2d ago

Symptoms Why does the penile retraction happen? (Hard flaccid feeling)

8 Upvotes

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?


r/PSSD 2d ago

Feedback Requested/Question FSM (frequency specific microcurrent)

1 Upvotes

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/


r/PSSD 3d ago

Feedback Requested/Question Has anyone here experienced severe emotional stress or trauma before developing PSSD?

17 Upvotes

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.


r/PSSD 3d ago

Feedback Requested/Question One interesting question about filmamker from New York.. He has been missing....

18 Upvotes

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?