‘I have been emotionally and sexually castrated, without the power to decide what I want or how I like my life best.’
These are the words of 47-year-old Carmen, who took the antidepressant Escitalopram for just over a year after being prescribed for anxiety aged 36.
At first, the drug transformed her life. All traces of her anxiety disappeared, and she became – in her own words – the most self-confident person on earth. Then came the devastating side-effect.
Carmen developed PSSD — post-SSRI sexual dysfunction, a long-term disorder that can cause erectile dysfunction, a drop in libido, lack of feeling in the genitals, and difficulty reaching orgasm.
Some say their emotions have been dulled, while others claim they can’t feel love for their children. These devastating consequences can persist for years, or even decades.
‘My world fell apart’
While on Escitalopram, Carmen says she could still feel emotions and experience sexual attraction, even if the strength of those feelings diminished. But after weaning herself off the drug, her world fell apart.
‘It wasn’t even 24 hours after the last dose that I began to feel a very strong disconnection to my sexuality. Something had evaporated and the feeling of just not being sexual came over me,’ she tells Metro.
Carmen tried to masturbate that evening and says it was impossible for her to climax. ‘It dehumanised me,’ she says.
PSSD was only recognised as a condition by the European Medicines Agency (EMA) in 2019, but the first reports of profound sexual side effects linked to SSRIs emerged in the 1990s.
This wasn’t long after the first selective serotonin reuptake inhibitor (SSRI), or antidepressant as they are more commonly known, was approved by the FDA in 1987. It came to market in the UK two years later.
Since then, a patient support organisation called PSSD Network has been launched along with a related Reddit community that has more than 10,000 members. Carmen is one of them.
It’s important to note that SSRIs can be life-saving and continue to help countless people around the world every day. More than 80 million antidepressants were prescribed by the NHS in the first 11 months of 2023 alone. But it’s clear some are left living with life-altering side-effects.
‘Some people decide not to have a partner or sex and that’s a choice. If I hadn’t been on the medication, maybe I would have decided to be single and enjoy erotic fantasies when they struck me,’ Carmen says.
‘Maybe I’d have had bad luck and my marriage would have fallen apart, but all the possibilities and choices would still be there. Instead, everything has been decided for me, not by me — I don’t accept living like this.’
Due to the drop in her libido and her inability to feel sexual sensations, Carmen has been left depressed and suicidal. ‘I have days where I cry all day and can’t go to work. It’s a nightmare,’ she says.
What’s being done?
Metro contacted leading SSRI manufacturer Eli Lilly, who said ‘nothing is more important’ than the safety of its medicines. The pharmaceutical company added it has been submitting fluoxetine [the antidepressant known as Prozac] safety data to organisations such as the UK Medicines and Healthcare Products Regulatory Agency and the FDA for decades.
Despite the potential side effects of the drug, an Eli Lilly spokesperson tells Metro: ‘It continues to be considered to have a positive benefit-risk profile by regulatory authorities, physicians and patients around the world.’
For years, researchers have been saying that funding to learn more about PSSD and how it might be treated remains almost nonexistent. Despite cases like Carmen’s, pharmaceutical giants including Eli Lilly and GSK gave no indication that they would fund PSSD research in the future, according to an investigation by the Observer.
What is PSSD and how do you treat it?
Post-SSRI Sexual Dysfunction (PSSD) is a condition that can occur after the discontinuation of selective serotonin reuptake inhibitors (SSRIs).
This is according to Dr Lawrence Cunningham for UK Care Guide, who tells Metro that patients affected by PSSD often report a persistent decrease in sexual function, including reduced libido and erectile dysfunction.
‘These symptoms can be particularly distressing because they may persist long after the medication has been stopped,’ he says.
The exact cause of PSSD isn’t fully understood. Some experts think it is linked to long-lasting changes to the brain’s serotonin system, while others believe it is due to the altering of neurotransmitters or your nervous system.
There is no definitive cure, according to Dr Cunningham, but he says psychological support and regular exercise and stress management techniques can all help ease the symptoms.
Eli Lilly did raise the issue of sexual dysfunction in its Prozac clinical trials, but people suffering with PSSD say they weren’t alerted to the possible side effect when they were prescribed the medication.
Metro spoke to people prescribed SSRIs who say doctors dismissed the concerns they raised about PSSD and other potential side effects relating to libido.
This is despite the fact that some SSRIS, including Prozac and sertraline, were originally proposed as a treatment to dull the urges of sex offenders.
Elsewhere, questions around the sexual side effects of SSRIs were raised in the European Parliament earlier this year by Finnish MEP Sirpa Pietikainen, who asked what will be done to raise awareness about long-term sexual dysfunction.
‘Flipping a switch’
When Metro covered 27-year-old Demi’s story in July for our weekly How I Do It column, she spoke about how the antidepressant Citalopram had affected her sex drive.
This prompted an outpouring of people with the same struggles, pleading for the media to listen to their stories.
Demi said she had a high sex drive before taking antidepressants, but that all changed.
‘I don’t get as turned on anymore,’ she explained. ‘It takes me ages to orgasm – they’re also not as powerful.
‘Sometimes I lose all feeling in my vulva. It can be like flipping a switch. I’ll feel something and then suddenly it will go completely numb.’
Daryl Brown, who was prescribed the antidepressant Seroxat in childhood because of his Tourette’s syndrome and OCD, tells Metro he stopped taking it in 2011 after losing feeling in his genitals. Daryl says he also struggled with erectile dysfunction.
‘I’ve avoided relationships because of my erectile dysfunction,’ the 34-year-old says. ‘It’s made me depressed and unmotivated, I feel victimised.
‘It’s interfered with my ability to have a regular private life with my own body and sexuality.’
The eight SSRIs prescribed in the UK:
Daryl has avoided relationships because of his PSSD. ‘I was too scared for anyone to find out,’ he adds. ‘I’ve rebuffed interest that I otherwise wouldn’t have wanted to rebuff.’
He cares deeply about his sexuality being taken away and says he hates that changes have happened to his body which he ‘doesn’t fully understand’.
Daryl claims medical professionals have told him he’s ‘imagining it’ and that his PSSD isn’t real, although a psychologist he saw more recently does believe him.
What do experts say?
Psychiatrist David Healy, the founder and CEO of Data Based Medicine, a company dedicated to making medicines safer, tells Metro that PSSD could be more prevalent than we think.
‘Most people who can’t get off SSRIs have a de facto form of PSSD, I think millions worldwide are likely affected,’ he says.
But why does sexual dysfunction occur on antidepressants, and why does it last for years after you stop taking them?
‘Anyone of any age, ethnic group or sex can develop PSSD after lengthy or brief exposure,’ David says.
‘We don’t understand what exactly underpins the problem. I believe it’s a peripheral (nerve) problem but many sufferers figure it’s more to do with the brain.’
David describes PSSD as a ‘life-altering issue’ and says it’s amazing that this side effect has been known about since clinical trials — yet we still have no answers.
In fact, there are still medical professionals who refuse to believe it’s a legitimate condition, according to David.
Now he and other researchers are working to understand more about PSSD and how to improve its symptoms.
In recent years, there have been calls for fewer antidepressants to be prescribed in the UK. David agrees with this sentiment.
‘Overprescribing antidepressants is killing people, I know 20 people who have taken their lives because of PSSD in the last two years,’ he says.
While other doctors have branded diagnosing PSSD as ‘challenging’, David says: ‘Its easy to identify in people if you believe them, but many doctors refuse to do that.’
This is exactly what PSSD-sufferer Carmen has faced when seeking professional help. She says she feels ‘medically gaslit’ by doctors.
Hitting what she perceives to be a brick wall, where doctors dismiss the symptoms she has been living with for a decade, has added insult to injury.
‘I’ve endured gaslighting, disregard, contempt and being told I have depression because it is impossible for antidepressants to cause PSSD,’ she says.
‘SSRIs have ripped away my essence, my soul, my genuine joy. I have a deep pain inside that only calms down at times. The emotional pain is so hard that if I didn’t have a family I’m sure I would have killed myself.
‘We need to raise awareness and find a cure so people like me can recover our lives.’
Metro has contacted the pharmaceutical company Lundbeck for comment.
For further support contact the PSSD Network and try talking to your GP.
Do you have a story to share?
Get in touch by emailing [email protected].
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