Post-SSRI Sexual Dysfunction: After 30 years, why is the health system still failing to recognise this life-limiting adverse effect?

Summary

Post-SSRI Sexual Dysfunction (PSSD) is a long-term adverse effect of Selective Serotonin Reuptake Inhibitors (SSRIs), a type of antidepressant medication. In this opinion piece, Harriet Vogt, Patient Safety Partner at NHS Sussex Integrated Care Board, outlines the need for recognition and research into PSSD to allow patients to make truly informed choices when considering SSRIs. She looks at the impact PSSD has on the sexual and emotional lives of thousands of people and highlights a new research study analysing the obstacles to quantifying its incidence and prevalence. Harriet argues that while the health system is beginning to recognise the value of placing patients at the heart of efforts to improve safety, this focus on listening is rarely given to individual patients who express concern about the impact of their medication or treatment.

Content

How many reading this piece have ever heard of Post-SSRI Sexual Dysfunction (PSSD)? 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), which includes loss of desire, diminished orgasm and erectile dysfunction.

But PSSD is different. It is an iatrogenic condition that persists, sometimes for many years, after the original medication has been halted. In medical terms, PSSD is “characterised most commonly by genital numbness, pleasureless or weak orgasm, loss of libido and erectile dysfunction.”[1] In human terms, it is a life-limiting dysfunction caused by a prescribed medication.

Many people are now sharing their accounts of PSSD—here are two examples that illustrate the impact the condition has on people's lives:

• "I only took escitalopram for 4.5 months at a low dose from August to December of 2020 and did a taper to stop the medication. I have been off the medication for over 2 years now and I have not made a significant step forward in recovery of my PSSD symptoms. On the medication, I could hardly function. I experienced sexual dysfunction, complete anhedonia, I couldn’t feel my emotions at all and couldn’t cry. I also experienced extreme DP/DR, Visual snow, Tinnitus, full body numbness, severe fatigue, lack of strength. I can’t have a relationship in this state, and knowing that others can experience pleasure in their life while I feel stuck behind a glass jar is torture." Rosie, 23
• "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. My libido and orgasm intensity are still only about 10% of what they were before PSSD. 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

You can read many more accounts on the website of the PSSD Network, a patient-led charity.

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 Independent Medicines and Medical Devices Safety Review (IMMDS review), sometimes referred to as the Cumberlege Review. The IMMDS Review stated:

"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."[2]

An important paper was published last week in Epidemiology and Psychiatric Sciences, titled ‘Post-SSRI sexual dysfunction: barriers to quantifying incidence and prevalence’. It was authored by two academic clinicians, founder members of the long established, independent research organisation Rxisk, whose stated purpose is ‘to make medicines safer for all of us’. 

The original paper is well worth reading as it details:

1. The struggle to achieve formal regulatory and medical recognition for PSSD, even though the 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 and ethical issues with setting up research that would involve exposing patients to the risk of PSSD.

Establishing the prevalence of PSSD is much more important than being a ‘nice to know’. It is essential for delivering properly informed consent to patients, enabling them to weigh the possible benefits and establish the risk of harms which could have material significance to how they want to live their lives.

I also believe there is 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’. Of course, there is no such person. The individual patient in front of us is not an anecdote.

Equally, most of the clinical trials, funded by companies for whom returns to investors are their understandable priority, are designed and results ‘ghost written’ to show products in their most favourable light, emphasising benefits and diminishing adverse effects, known as ‘side’ effects. These issues are powerfully articulated in the book Pharmageddon by David Healy. 

It feels in every way right that patients are at the centre of the NHS National Patient Safety Strategy and the Patient Safety Incident Response Framework (PSIRF). Claire Cox gave a brilliant demonstration of putting patients at the heart of an investigation with assiduousness and sensitivity in a presentation about Patient Safety Incident Investigations (PSII) under PSIRF at a recent Patient Safety Management Network (PSMN) meeting. 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 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’ misses the point. What patients are listening to is other patients articulating their experiences of medicine in all its dimensions. For example, 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, literally begging for official recognition, support and research. It is a similar story to those whose experiences of antidepressant withdrawal were sidelined for 30 years. As a health system, we must learn to listen more deeply, and act with decent speed.

Related reading

• Long-lasting sexual dysfunction after taking antidepressants: Lack of recognition harmful to patients
• The question that will save lives: Interview with Katinka Blackford Newman, founder of Antidepressant Risks

References

1 Healy D, Mangin D. Post-SSRI sexual dysfunction: barriers to quantifying incidence and prevalence. Epidemiology and Psychiatric Sciences. 18 July 2024
2 First Do No Harm: The report of the Independent Medicines and Medical Devices Safety Review, 8 July 2020