In an opinion piece published on the hub today Luke* talks about Post-SSRI sexual dysfunction (PSSD).

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

Luke argues that further action needs to be taken if we are to see long-lasting improvements in the care and treatment of patients with PSSD. He calls for:

• 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.

Have you had an experience relating to the article? What do you think should be done to improve patient safety? 

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Several things are needed to address this harm that has gone unacknowledged for over 30 years:

1. An immediate alert being issued to all prescribers. The majority of prescribers are unaware about PSSD, meaning that they are not taking this life-changing risk into account when considering whether to prescribe SSRIs and similar drugs.

2. Information regarding the SYMPTOMS of PSSD being issued to all prescribers. Clinicians are largely ignorant about PSSD and may misdiagnose or dismiss a case of PSSD.

3. Patient Information Leaflets being updated to include explicit warnings about PSSD. Current leaflets were updated in 2019, yet do not mention genital numbness, the key symptom of PSSD. Furthermore, ' sexual symptoms may persist' should be changed to 'sexual symptoms may persist indefinitely' to make it clear PSSD can be permanent.

4. Mandatory reporting of cases of PSSD via the Yellow Card scheme. Many sufferers report that their Dr did not take their PSSD seriously, leading to the underreporting of PSSD to the MHRA. Whilst patients can submit a report themselves, it would be better if done by a Dr who can include any salient medical information.

5. Updated information regarding PSSD added to the NHS website. Current NHS websites do not describe PSSD fully and instead only suggest that people consult their Dr if they are 'concerned'. There is currently little point consulting a Dr regarding PSSD: they are unlikely to have heard it, unlikely to report it and there is no treatment.

6. An immediate release of funding for a prevalence study to be done about PSSD. Prior to 2019, Drs did nothing about PSSD as it was not officially recognised. Now the MHRA acknowledge 'enduring sexual side effects' they say it is 'rare'. The truth is that noone has bothered to do a true prevalence study. Even if a Dr is aware of PSSD, they cannot fully take into account this risk as noone knows the magnitude of this. Furthermore, any Dr claiming the risk of PSSD is vanishingly small could well be wrong.

7. Immediate funding released to study the pathology of PSSD and find a cure.

8. Acknowledgement that SSRIs and similar medicines have many off-label uses unrelated to mental health. Drs often say that the risk of PSSD must be balanced against the risk of unmedicated people committing suicide. For people taking PSSD-inducing medications for hormonal problems, gut conditions and pain, the use of suicidal people as an excuse to deny informed consent is unethical.

9. A specialist service set up to provide specialist support (and treatment once it becomes available). Currently, should a PSSD manage to get their Dr to take them seriously, they may be sent to services for people with psychosexual problems and embark on treatments that are entirely inappropriate and, ultimately, distressing.

10. A full public inquiry into how the entire medical establishment missed this side effect. The MHRA followed their algorithms, yet PSSD was not picked up by post-marketing surveillance (despite reports of PSSD going back to 1991). If noone is held accountable for this spectacular failing of pharmacovigilance, it will happen again.

PSSD is a human rights violation and must be taken extremely serious. I have had this for 18 months and not a day goes by where it is not difficult to keep going. There needs to be urgent research and funding for this syndrome as soon as possible.  No one in this world should be left unable to form romantic partnerships and relationships. it is simply unfathomable how this has been aloud to happen and a crime that it continues to go completely unnoticed. Doctors also need to be made aware of the possibility. A simple letter to GPs and other health care professionals in the NHS should be relatively easy. The MHRA have had the knowledge of this since since the mid 1980’s and have done next to nothing to prevent patients from being chemically castrated by these drugs. Urgent action must be taken.

I agree and will look into these issues 

You might be interested in this new interview with Katinka Blackford Newman, founder of the website AntiDepressantrisks.org. Katinka references the issues of PSSD as a risk that patients are not usually told about.

 

My experience and damn story due to  antidepressants (#escitalopram/#lexapro) that ripped from me the most valuable: emotions and sensuality

#PSSD exists

https://www.madinamerica.com/2024/08/i-am-carmen-and-i-have-pssd/

@PSSDnomorelove Thank you for sharing this useful infographic and your story. 

Published this week on the hub:

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

An opinion piece for the hub written by Harriet Vogt looking at the need for recognition and research into PSSD.