Long-lasting sexual dysfunction after taking antidepressants: Lack of recognition harmful to patients

Summary

This opinion piece is by Luke* who suffers from post-SSRI sexual dysfunction (PSSD) after he was prescribed a selective serotonin reuptake inhibitor (SSRI) antidepressant. 

Luke introduces the condition, drawing on the experiences that others have shared through PSSD communities, to highlight the devastating impact on patients. He calls for widespread recognition, improved risk communication and better support for sufferers. 

*Name has been changed

Content

I am Luke. I’ve been suffering with PSSD for more than 10 years. My life has been drastically altered.

I am now an active member of the PSSD UK patient group and PSSD Network, through which I help raise awareness and support fellow sufferers in the hope that our situations can improve and a cure can be found.

Post-SSRI sexual dysfunction

Post-SSRI sexual dysfunction (PSSD) is a disorder in which individuals, who have been administered selective serotonin reuptake inhibitors (SSRIs) or other serotonin reuptake-inhibiting (SRI) drugs, experience persistent changes in sexual function and/or genital numbness for an extended period after ceasing to take the drug.

Although it is most commonly caused by SSRIs (a widely prescribed group of antidepressants), cases have also been reported following the use of serotonin-norepinephrine reuptake inhibitors (SNRIs), SRI tricyclic antidepressants, SRI antihistamines, tetracycline antibiotics such as doxycycline, and analgesics such as tramadol.[1]

Antidepressants have been known for some time to impact sexual function (while being taken) and this risk is included, to some extent, in the medication information. However, the risk of long-term impact to sexual function, after a person ceases to take the medication, has lacked widespread recognition for many years despite being highlighted by patients and researchers around the world.[2,3,4]

Awareness remains poor despite some formal recognition

In 2019, the European Medicines Agency formally recognised that sexual dysfunction can persist beyond discontinuation of SSRI and SNRI antidepressants[5]. The Pharmacovigilance Risk Assessment Committee stated:

“Sexual dysfunction, which is known to occur with treatment with SSRIs and SNRIs and usually resolves after treatment has stopped, can be long-lasting in some patients, even after treatment withdrawal.”[6]

Despite this, awareness is still very poor and formal recognition still does not exist in most countries.

Although some urologists and sexual medicine specialists seem familiar with the condition, many general practitioners have not heard of PSSD. Psychiatrists often dispute the legitimacy of the illness or claim that it is exceedingly rare, but don’t have any data to prove the prevalence.

For a long time, PSSD has been dismissed by many doctors as being a psycho-somatic illness – for example, the result of untreated depression. It is still typical for patients to be disbelieved like this, despite the clear distinction between the diagnostic criteria for clinical depression and the diagnostic criteria that has been developed by researchers for PSSD.[7]

The latter outlines two ‘necessary’ criteria for PSSD to be diagnosed.

(1) Prior treatment with a serotonin reuptake inhibitor.

(2) An enduring change in somatic (tactile) or erogenous (sexual) genital sensation after treatment stops.

‘Additional’ criteria includes:

• Enduring reduction or loss of sexual desire.
• Enduring erectile dysfunction (males).
• Enduring inability to orgasm or decreased sensation of pleasure during orgasm.
• The problem is present for ≥3 months after stopping treatment.

Also listed are both sexual and non-sexual symptoms of PSSD as per below:

• genital pain
• reduced nipple sensitivity
• decreased or loss of nocturnal erections (males)
• reduced ejaculatory force (males)
• flaccid glans during erection (males)
• decreased vaginal lubrication (females)
• emotional numbing
• depersonalisation
• other sensory problems involving skin, smell, taste or vision.

The lack of awareness amongst the medical community also means that there is no available treatment or support for PSSD sufferers, who will often turn to the internet for help. Many sufferers, desperate to improve things, end up trialling a variety of drugs and supplements, some of which seem to make symptoms permanently worse.

Medication labelling and communicating risk

Only Canada and the EU countries (plus post-Brexit Britain) require any warning of persistent sexual side effects on the drug labels. In the rest of the world, there are still no warnings about persistent sexual side effects of SRI antidepressants. Non-English speakers have additional challenges finding information about PSSD, even online.

With so many doctors still unaware of the illness, the risks are frequently not being communicated to patients, meaning they can’t possibly give informed consent when taking antidepressants as prescribed.

A community abandoned

(Image: PSSD Network photo campaign) 

PSSD sufferers in our communities are absolutely desperate. They feel lied to, mistreated and abandoned. We know from those with lived experience that PSSD often includes complete loss of libido and ability to function sexually, complete emotional dysfunction (anhedonia) and cognitive dysfunction. This frequently results in the breakup of existing romantic relationships and extreme difficulty in forming new ones.

PSSD sufferers can find it hard to bond and connect emotionally with others due to emotional dysfunction, and struggle to find any kind of enjoyment in activities that were previously enjoyable. It can cause alienation from friends and family. Some are unable to continue working due to severe cognitive impairments. They often describe it as like being chemically castrated and lobotomised, bearing no resemblance to the experience of suffering clinical depression.

Despite PSSD being a result of a prescribed medication, sufferers frequently report being gaslit by doctors, who have typically claimed that their complaints are really symptoms of underlying depression. However, patients prescribed SRI antidepressants for conditions as diverse as irritable bowel syndrome, nerve pain and premenstrual dysphoric disorder have also developed PSSD.

These harmful attitudes, and the lack of any known treatment or available support, makes PSSD sufferers feel like there is no hope. Some have ended up taking their lives as a result of PSSD, despite never having been suicidal at any point in their lives previously.

Improvements needed

Thankfully, further research[8] and an increase in media coverage in the UK,[9] including a recent Panorama documentary, are helping draw attention to this issue and change attitudes.

There needs to be further action taken if we are to see long-lasting improvements in the care and treatment of patients with PSSD. I would like to see:

• Widespread acknowledgement of the condition.
• Doctors provided with up-to-date information and training (informed by lived experience) on the dangers of antidepressants and how to support patients.
• Warnings on instructions for the medications updated and prescribing clinicians alerted to ensure patients are adequately informed.
• An awareness and media campaign launched targeting patients, prescribers and the public.
• Funding secured for research that helps us gain an understanding of the underlying pathophysiology, identification of a diagnostic biomarker and, eventually, a cure for PSSD.
• Doctors listening to patients so they can understand how PSSD is a life-changing condition and be able to refer to support services.

PSSD is a modern-day tragedy which devastates the lives of sufferers and their families. There are people with this condition who still don’t know that there is a name for it and more of them come out of the woodwork with each new media mention.

It is vital that the medical community begins listening and supporting sufferers, and researching a cure before more lives are lost.

How you can help

I’d encourage you to visit the PSSD Network website to help you understand PSSD and our campaigning work.

Clinicians can offer their support by watching this powerful podcast made by PSSD sufferers, discussing the issue with their healthcare organisation and by joining the list of doctors and specialists acknowledging the condition.

Researchers can get involved by contacting PSSD network or RxISK.  

Patients can speak out about PSSD using the initiatives under the ‘take action’ section of the  PSSD Network website. 

Anyone can donate to research via the RxISK website or PSSD Network.

References

1. Healy D, Bahrick A, Bak M et al. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med. 2022;33(1):65-76.  
2. Healy D. Post-SSRI sexual dysfunction & other enduring sexual dysfunctions. Cambridge University Press, 2019. Access online 18/09/2023.  
3. Healy D, Le Noury J and Mangin D. Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases. Int J Risk Saf Med. 29 (2018) 125–134. 
4. PSSD UK. Our stories. Accessed online 18/09/2023.    
5. Pharmacovigilance Risk Assessment Committee (PRAC).  New product information wording – Extracts from PRAC recommendations on signals. European Medicines Agency.  2019.
6. Lane C. Post-SSRI Sexual Dysfunction Recognized as Medical Condition. Psychology Today. 2019. Accessed online 18/09/2023. 
7. Healy D, Bahrick A, Bak M et al. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. Int J Risk Saf Med. 2022;33(1):65-76.  
8. Ben-Sheetrit J, Hermon Y, Birkenfeld S at el.  Estimating the risk of irreversible post-SSRI sexual dysfunction (PSSD) due to serotonergic antidepressants. Ann Gen Psychiatry 22, 15 (2023).
9. 9. RxISK. Media Articles: PSSD & Related Conditions. Accessed online 18/09/2023.

Do you have an experience or insights to share?

Have you ever experienced adverse and/or long-lasting side effects of a medication you were prescribed that you didn't feel you adequately warned about beforehand?

Perhaps you are a prescribing clinician who can share some of the challenges  and complexities involved in medication safety?

What did you think of the points raised and calls to action in Luke's article?

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