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What is PSSD?
In 2019, the European Medicines Agency acknowledged that sexual dysfunctions can persist after discontinuing SSRI and SNRI medications. So far, only persistent sexual symptoms have been officially recognized, but numerous other symptoms reported by those affected have not yet received official acknowledgment. Despite its name, Post-SSRI Sexual Dysfunction (PSSD) is a neurologically diverse condition that can be disabling at its worst. Both SSRI and SNRI medications are known to trigger this condition.
Individuals with PSSD describe various symptoms, including significant numbness in the body, genital numbness, complete loss of libido, erectile and arousal dysfunction, inability to orgasm, total lack of emotions, cognitive and memory impairments, visual disturbances (visual snow), autonomic nervous system disorders, tinnitus, tremors, and akathisia.
Symptoms can begin after the first medication dose, abruptly during long-term treatment, or after discontinuation. According to diagnostic criteria, symptoms must persist for more than 3 months after the last medication dose. The condition is typically permanent and lifelong, with no known cure.
It has also occurred in previously healthy individuals who received SSRI treatment in clinical trials.
Identifying PSSD in healthcare settings has proven challenging. When a patient develops PSSD, their functional capacity usually declines significantly, often leading to sudden work disability, accompanied by numerous misdiagnoses. Despite being purely neurological, patients are frequently wrongly stigmatized with various mental health disorders. However, the symptoms are unprecedented for the patient and can be physiologically localized.
Patients require comprehensive neurological investigations at the hospital level, but this rarely happens due to the condition's poor visibility within the medical community. In the worst cases, individuals who were previously functioning well with mild depression or chronic pain are directed to psychiatric care, and the medication that caused the severe illness is intensified. This inevitably leads to a sudden deterioration in the patient's well-being.
Currently, only a few specialized physicians in Finland are familiar with PSSD and guide patients through etiological investigations. The disease exhibits features of severe brain inflammation and findings suggestive of autoimmune-mediated autonomic dysfunction and small fiber neuropathy (touch/cold/heat/vibration sensitivity). Neuropathy of the cranial nerve and pudendal nerve is also observed. The condition can be severely disabling, significantly impacting work capacity and relationships.
Resources must be allocated for the research and treatment of PSSD.
Professor and researcher Robert Melcangi from the University of Milan has offered research assistance to investigate the condition in Finland. So far, our university hospitals have not shown interest in exploring the illness, despite significant neurological findings in some patients.
Currently, there is an ongoing PSSD research project at the University of Milan, which requires €80,000 in research funding.
Allocating resources for PSSD research is crucial. The true prevalence of the condition is not known, but leading researchers in the field fear it is significantly underdiagnosed. Neurological side effects alone are very common with SSRI/SNRI medications, and sexual dysfunctions are reported in over 90% of SSRI users due to medication.
Awareness of the existence of the condition needs to be widely disseminated to healthcare districts and well-being regions so that the lack of knowledge among doctors does not hinder patients' access to help or collaborative research efforts. To facilitate this, the diagnostic criteria for PSSD should be translated into Finnish.
Many patients have not been able to undergo examinations in specialized neurological units in tertiary care hospitals, for example, due to lack of sensation or pain, as all manifestations of small fiber neuropathy are poorly recognized in Finland. Neurologists specializing in small fiber neuropathy have diagnosed many PSSD patients with the condition, even when specialized healthcare has already refused further investigations.
