We are pleased to announce the publication of “Post-SSRI sexual dysfunction: barriers to quantifying incidence and prevalence” in Epidemiology and Psychiatric Sciences.
The journal was an ideal fit for the article, so we’re pleased that they not only accepted it for publication but also made it an editorial and freely available.
RxISK first explored the idea of PSSD prevalence in a 2016 blog post: How common is post-SSRI sexual dysfunction? It seemed obvious that there were a number of reasons that would stop people coming forward about their condition, and even if they did, they may have difficulty in having it recognised. Although that post feels a little dated now, it makes some important points which are still relevant and are discussed in the new publication.
A couple of years ago, we were liaising with researchers who were considering a possible study that would involve surveying clinicians about how often they encounter PSSD. The researchers were new to the condition and weren’t aware that surveying clinicians in this way would be unlikely to provide useful results. Many clinicians don’t mention sexual side effects at all when prescribing antidepressants, and they often aren’t receptive to hearing about PSSD when patients try to report it. This was highlighted in our patient experiences article.
Study methods that might seem intuitive and would work for other conditions can be completely unsuitable for investigating PSSD. Perhaps the most obvious of these is that you can’t run a clinical trial where you give people SSRIs and see how many of them develop PSSD because you would be intentionally injuring participants. Similarly, assumptions that might be made for other conditions such as equating relatively low numbers of reports with low incidence, may not hold true for PSSD.
Articles in the medical literature have covered various aspects of PSSD including symptoms, possible mechanisms, attempted treatments, trajectory of the condition, and patient experiences. However, there has been relatively little discussion of the factors that can lead to under-reporting and under-recognition which consequently make it very difficult to accurately quantify the occurrence of the condition.
We previously considered putting together some kind of document or journal article that would help to inform healthcare professionals and researchers about these issues. However, the idea was put aside in favour of creating diagnostic criteria, and it wasn’t until earlier this year that work on it recommenced.
We hope you like the new publication and would be grateful if you could share it as widely as possible.
Like many journals, Epidemiology and Psychiatric Sciences uses a tool called Altmetric to track the number of times an article is mentioned on various platforms including news outlets, blogs, forums, Wikipedia, YouTube and social media. The more it’s shared and discussed online, the higher the score. A high score helps the article to get noticed and indicates to other academics that it might be important and worth reading.
If you are writing or posting about it, please make sure to include the following link:
https://doi.org/10.1017/S2045796024000441
tim says
This compelling and highly readable, superbly referenced, scientific paper/editorial is a welcome addition to the literature addressing the intense and protracted human suffering caused by PSSD.
Misery which (as documented) may understandably result in suicide.
Greater knowledge, awareness and understanding of this condition amongst both generalist and specialist physicians is clearly required. The rejection and denial of PSSD during consultations seeking help and recognition is unforgivable.
I hope this is widely read in General Practice, Urology, Gynaecology and in Genito-Urinary Medicine/Sexual Health.
In the latter speciality, clinicians will have the benefit of being skilled, sensitive and confident in taking a detailed sexual history. (As are some GPs).
It would seem to be an essential reference for all prescribers of SSRIs/SNRI antidepressants.
Thank you for ensuring that we have access to read and to re-read this publication in full.
Mace says
I was surprised to see my hometown at the top of the article. Its almost the middle of nowhere. It gave me renewed strength.
Both me and another NZ person have reported our PSSD symptoms to our adverse reaction reporting body, but, we both still don’t show up in their searchable database a year later.
Thank you for the petition back in 2018 to NZ. Its a shame NZ did not act on it as it might have stopped me from getting PSSD if they acted on it a bit better.
1 month after your petition was discussed, all but Sertraline changed their consumer information to include persistent dysfunction, even though they were not required to and NZ found no reason to add it to consumer information, just the data sheets. Funny That!
Thank you both for the work you do! This article is great.
annie says
On the path, up or down –
DM – let’s go there…
If you read any article in the Daily Mail, or Scottish Daily Mail, do you ever get the impression, that this is the first time they have ever scribed on the subject of psychotropic drugs?
Mostly often, a different journalist, most often not linking one important article to another.
Katinka Newman, of the Pill That Steals Lives, and antidepressantrisks –
Professor Healy has praised the Daily Mail for getting the issues associated with SSRIs — including withdrawal symptoms a nd addiction — into the spotlight.
‘The Daily Mail has done more than any other newspaper to highlight these problems and has campaigned most effectively on this. It has listened to patients when the medical profession didn’t,’ he says.
Katinka Blackford Newman, who herself experienced short-term sexual dysfunction while taking the medication, adds: ‘At the time, I felt totally disbelieved, but the fact that the Daily Mail believed me gave me the confidence to campaign to help others.’
https://www.dailymail.co.uk/health/article-7125745/How-depression-pills-wreck-sex-life.html
Debilitating antidepressant side effects could be eight times more common than previously thought, experts claim
READ MORE: One in six people in England are on antidepressants, data shows
By Emily Stearn, Health Reporter For Mailonline
Published: 10:08, 18 September 2024 | Updated: 11:37, 18 September 2024
https://www.dailymail.co.uk/health/article-13863483/antidepressant-effects-eight-times-common-thought-experts.html?ns_mchannel=rss&ns_campaign=1490&ito=social-twitter_mailonline
But their use has been linked to long-term and even permanent sexual dysfunction by researchers.
The NHS has warned that side effects such as a loss of libido and achieving orgasm, lower sperm count and erectile dysfunction ‘can persist’ after taking them — and patients have described feeling ‘carved out’, relationships wrecked, from their use.
The libido-dampening nature of SSRIs was thrust into the spotlight last year by the Scottish singer Lewis Capaldi.
In a bare-all Netflix documentary, he spoke about taking it to help treat his anxiety and grimly commented on the knock-on effect it had on his sexual health.
‘They’re not really doing anything except I can’t get a f****** hard-on to save my life’, he said.
Harriet says
Clues about the proportion of antidepressant users affected by PSSD might be found in a cohort study, such as the Avon Longitudinal Study of Parents and Children (ALSPAC) as this type of study collects information on prescribed medicines, and gathers information about a lot of other aspects of participants’ lives – maybe they asked about sexual function?
In addition, they have gathered data from pregnancy, so may have information re exposure in-utero.
annie says
Martin Plöderl lists his recipients
Martin Plöderl@PloederlM6h
@markhoro@joannamoncrieff@HengartnerMP@christophlan@DrDavidHealy@PadbergThorsten
@Altostrata@RPursse@psychepi
https://x.com/PloederlM/status/1837397076289659136
Frequency of self-reported persistent post-treatment genital hypoesthesia among past antidepressant users: a cross-sectional survey of sexual and gender minority youth in Canada and the US
https://link.springer.com/article/10.1007/s00127-024-02769-0
Abstract
Purpose
Persistent post-treatment genital hypoesthesia (PPTGH) is a primary symptom of post-SSRI sexual dysfunction (PSSD), an iatrogenic syndrome characterized by enduring sexual dysfunction following the discontinuation of some antidepressants. We aimed to estimate the frequency of PPTGH among past users of psychiatric treatments, particularly antidepressants.
Methods
We used a subsample of UnACoRN, a US/Canada survey of sexual and gender minority youth aged 15 to 29. We included participants with a history of psychiatric drug use. We excluded individuals with genital surgeries or without sexual experience. The analysis involved chi-square tests for initial group comparisons, post hoc tests for multiple comparisons, and logistic regression among those who had stopped taking medication. We exponentiated the regression to estimate the odds of PPTGH by drug type, adjusting for age, sex-assigned-at-birth, hormone treatment, and depression severity in three nested models.
Results
574 of 2179 survey participants reported genital hypoesthesia. They were older and more likely to report male sex assignment at birth, hormonal therapy history, and psychiatric drug history. The frequency of PPTGH among antidepressant users was 13.2% (93/707) compared to 0.9% (1/102) among users of other medications; adjusted odds ratio: 14.2 (95% CI: 2.92 to 257).
Conclusion
Antidepressant discontinuation is strongly associated with PPTGH in the US and Canada where SSRI/SNRI medications account for 80% of antidepressant prescriptions. We call for standardized international warnings and transparent, informed consent. Future research should expand upon our efforts to estimate the risk of PSSD by including all the proposed diagnostic criteria, including documentation of temporal changes in PSSD-related symptoms before and after treatment (≥3 months).
Plain Language Summary
This study explored the long-lasting sexual side effects—specifically, reduced genital sensitivity—of certain antidepressants, even after stopping the medication, in a diverse group of young people, primarily those identifying as sexual and gender minorities. We analyzed responses from a large survey, focusing on participants with a history of psychiatric drug use but without genital surgeries. Our findings indicate that those who used antidepressants experienced a substantial increase in reports of reduced genital sensitivity—13.2% of antidepressant users compared to 0.9% of users of other medications. This symptom is more common among individuals who had used antidepressants and sedatives. Our results emphasize the necessity for clear warnings and proper consent processes about potential long-term sexual side effects, particularly for young patients, and standardization of these procedures across countries. Further research is needed to explore this condition more deeply, including studies of all related symptoms and their development over time before and after treatment.
Key points
• PSSD is a critical issue affecting the quality of life among youth, necessitating detailed investigation into its prevalence and risk factors.
• This study found a significant association (OR = 14.2; 95% CI: 2.92 to 257) between persistent genital hypoesthesia post-antidepressant treatment and past antidepressant use in sexually active sexual and gender minority youth, highlighting the need for informed consent and patient education.
• Past use of sedatives was associated with increased reporting of post-treatment genital hypoesthesia (OR = 1.73, 95% CI: 1.03 to 2.89).
• The findings underscore the urgent need for refined research, transparent patient education, and genuine informed consent regarding the persistent sexual dysfunction risks associated with antidepressants.
tim says
“Urgent need for — — — genuine informed consent regarding the persistent sexual dysfunction risks associated with antidepressants”.
Yes indeed, and AKATHYSIA please.
All medical interventions, including prescribing and deprescribing require full, fair and informed consent.
Harriet Vogt says
This is a great paper by you and Dee, not just in terms of content, but in terms of strategy – as you both obviously know. It’s the, hopefully, final and assumptive stage of putting an appalling iatrogenic condition on the regulatory and medical map. No more argument PSSD exists, why is this condition so hard to quantify?
In an attempt to showcase the paper for a wider patient safety audience, I’ve written the following and have just posted it on the patient safety learning hub. https://www.patientsafetylearning.org/the-hub Whether I’ve written something unacceptable and it gets bounced remains to be seen. Have plans for further circulation.
An important paper was published last week in Epidemiology and Psychiatric Sciences, ‘Post-SSRI sexual dysfunction: barriers to quantifying incidence and prevalence’.
https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/postssri-sexual-dysfunction-barriers-to-quantifying-incidence-and-prevalence/EF502A763704810C127E2561CFB52FD2
It was authored by two academic clinicians, founder members of the long established, independent research organisation, https://rxisk.org/, whose stated purpose is – ‘to make medicines safer for all of us’.
Before going any further, how many reading this piece have ever heard of PSSD, Post SSRI Sexual Dysfunction? I expect a lot of people will be aware of the sexual dysfunction that is an acknowledged adverse effect of taking Selective Serotonin Reuptake Inhibitors (SSRIs) – associated with loss of desire, diminished orgasm, ED etc.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108697/
But PSSD is different. Appropriately called Post SSRI sexual dysfunction, this is an iatrogenic condition that persists after – for some many years after – the original medication has been halted.
In medical terms, to quote the academic paper, it is ‘characterised most commonly by genital numbness, pleasureless or weak orgasm, loss of libido and erectile dysfunction’.
In human terms, it is a life limiting iatrogenic dysfunction. Patients’ personal narratives make distressing reading. Here are some excerpts from a few, there are many more and detailed information about the condition, research etc. on the PSSD community’s charity website: https://www.pssdnetwork.org/community
“At the age of 22 in November 2007, I began taking Citalopram for just over three weeks to treat OCD. Within a day of taking the first tablet, I noticed genital numbness, a nearly complete loss of libido, and pleasureless orgasms. I wasn’t too concerned and assumed these symptoms would reverse after I discontinued the drug. However, even after stopping Citalopram, they never did.
I have now endured PSSD for almost 16 years, with no significant improvement in any of my symptoms, except for perhaps a slight reduction in genital numbness.
The impact this has had on my life has been enormous, negatively affecting almost every aspect. I have lost several relationships with women due to PSSD, as sustaining a romantic relationship with this condition has proven to be very challenging.
The emotional numbness has also had a profound effect on my life. I can no longer feel a whole range of emotions that I used to experience. I can’t feel excited to go on holiday, to spend time with a friend, or to do a hobby; and I can’t feel sad, feel romantic feelings, or empathise with others in the same way as before.
Additionally, I’ve had to deal with a lot of disbelief and gaslighting from doctors who have refused to acknowledge this condition, contributing significantly to the trauma of living with it. There have been instances where doctors even laughed at me when I sought help for my persistent sexual symptoms, which was an unpleasant and humiliating experience.’
Roy, 38.
When I was 15 I was prescribed (Zoloft) sertraline, an SSRI antidepressant for anxiety and OCD. My doctor told me it had an excellent safety profile and that the worst thing that could happen is that I may experience nausea for a few weeks. Later that night I would be permanently chemically castrated.
A few hours after taking my first pill my genitals were completely numb and I had lost all libido. I wasn’t worried about this at the time however as I thought it was temporary and that things would go back to normal when I discontinued the medication.
I stayed on SSRIs for a year and half before deciding to quit age 17 so I could get my sexuality back before I started university. A week after stopping the meds I began to realise that things weren’t going back to normal. My genitals were still completely numb and I still had no libido.
I noticed that I was also starting to develop emotional numbness and the inability to enjoy things that I previously did. My mood was extremely low in a way I had never experienced before taking the meds.
I had to drop out of uni because of cognitive decline. Sertraline stole my identity. I am now an empty shell of a person. I was given an SSRI at the age of 15 with no informed consent about the potentially permanent and devastating effects they can have, I never got to grow into the person I should have been. I am 23 now but feel frozen at 15 years old when I started taking antidepressants. PSSD has destroyed my life.”
Rebekah 23
The original paper is well worth reading in full – detailing:
1) The struggle to achieve formal regulatory and medical recognition for PSSD – even though our UK Medicines and Healthcare products Regulatory Agency (MHRA) indicated that the first report of enduring sexual dysfunction after an SSRI was halted involved fluoxetine in 1991.
2) The obstacles to establishing the prevalence and incidence of the condition – including lack of awareness amongst both clinicians and patients, patient embarrassment and vagueness about their own sexual responsiveness over time, ethical issues with setting up research that would involve exposing patients to the risk of PSSD etc.
Establishing the prevalence of PSSD is, of course, much more important than ‘nice to know’. It is essential for delivering properly informed consent to patients, enabling them to weigh up possible benefits and harms of material significance to how they want to live their lives.
The battle for recognition of this awful condition – fought by a small number of principled academics and clinicians, as well as growing numbers of suffering patients – is a painful action replay of the valproate, pelvic mesh and primodos scandals uncovered by the IMMDS review:
‘We have found that the healthcare system… is disjointed, siloed, unresponsive and defensive. It does not adequately recognise that patients are its raison d’etre. It has failed to listen to their concerns and when, belatedly, it has decided to act it has too often moved glacially.. The system is not good enough at spotting trends in practice and outcomes that give rise to safety concerns. Listening to patients is pivotal to that.’
https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf
Arguably, there is also a problematic cultural overlay. As medicine has become increasingly ‘scientised’ and ‘evidence-based ‘, it is too easy to forget that clinical trial data, to demonstrate that a drug essentially works, is looking at the ‘average patient’ – and, of course, there is no such person. The individual patient in front of us is not an anecdote.
Equally, as we all must know, most of the clinical trials, funded by companies for whom returns to investors are their understandable priority, are designed and results ‘ghostwritten’ to show products in their most favourable light, emphasising benefits and diminishing adverse effects, known as ‘side’ effects. (Issues powerfully articulated in https://www.goodreads.com/book/show/13268364-pharmageddon).
It feels in every way right that patients are at the centre of our national patient safety strategy and PSIRF. Claire Cox gave a brilliant demonstration of putting patients at the heart of an investigation with assiduousness and sensitivity in her PSII under PSIRF talk, the other week. How and why patients, such as those with PSSD, are not always afforded this same individual attention and respect when it comes to prescribed medication, is a matter that needs to concern us all.
It’s a truism that the web has transformed human life in a multitude of ways. Not least of all in the democratisation of knowledge. Medical expertise and training remain in the hard grafted ownership of professionals, but patients congregate in social media communities to share their experiences of medical treatments. Suggesting that patients shouldn’t listen to ‘Dr Google’ is missing the point. What patients are listening to is other patients articulating their experiences of medicine in all its dimensions. Patients have no need to understand the complexities of neurobiology, because what matters to them is their experience of treatment – how it makes them feel.
It is tragic to see PSSD patients, whose sexuality, sensuality and emotional reactivity have effectively been deleted – (by a class of drug that clearly benefits others) – literally begging for official recognition, support and research. Just as those whose experiences of antidepressant withdrawal were sidelined for 30 years. As a system, we must learn to listen more deeply – and act with decent speed.
Mike says
I have a question for those here who are knowledgeable about PSSD, is it true that some supplements make PSSD worse and is crashing from a supplement a real thing like they say on the PSSD forums and reddit? And if true does the supplement crash occur because of the increase in serotonin from taking the supplement or maybe some other reason? Can anyone let me know if a “crash” is real? The reason I ask these questions is because I have been experimenting with supplements for over 2 years now I am trying to get out of this living nightmare (PSSD) I am desperate to get better and I have had mixed results with supplements but recently most of the libido supplements are making my ED even worse instead of better.
Dr. David Healy says
M
This is a good question. Can you, perhaps with some help, draw up a list of supplements that make things worse or are linked to crashing. We are getting some developments in this area and a list like this would be helpful to have
David
Kevin says
We really to stop calling this PSSD. It’s more than that. Its a lost of environmental awareness. You could hear a bird and I won’t. I couldn’t read empathy in your facial expressions. I could not feel a positive or negative mood although I was aware I should be able too. I could feel water run down my skin in the shower but take no pleasure from it. My drive to do things was gone as I couldn’t feel motivation. I couldn’t sense the warmth in my hands if I touch them Or the moisture content in my skin.
Sex starts in the brain. If you can’t becoming emotionally aroused in anyway. Then why would the genital glands be of use?
It feels like the wires were cut. You know you want these things. That tells me the brain cells are fine. They just can’t communicate.
But yes the PSSD label is incorrect. Emotional, Situational and environmental anesthesia fits much better. with the sexual part being a symptom.
Dr. David Healy says
We don’t need to stop calling this PSSD. No-one is saying there aren’t lots of other symptoms – but things like genital numbing are so distinctive – they don’t happen in any other condition – that focussing on how this happens makes sense, Many of the other symptoms people have can happen in lots of other conditions and cannot be pinned down to a few inches of skin so become almost impossible to even think about never mind research
D