At 21, Katie Collingwood visited her GP because she was feeling low.
She had recently completed a university course she had not enjoyed, was mourning the death of a close friend who had taken his own life and was trying to understand her sexuality.
Her GP prescribed fluoxetine, the antidepressant more widely known by the brand name Prozac.
Within months, Katie says, her sadness had eased. But along with it, she noticed that her emotions, sexual desire and ability to feel pleasure were also disappearing.
‘I wasn’t feeling sad anymore,’ she recalls, ‘but I wasn’t actually feeling anything.’
‘It was as if my emotions had been wiped out, and so had my sexuality.’
As the months went by and the symptoms failed to improve, Katie says she became increasingly worried.
‘After taking fluoxetine for about a year, I tried to return to having relationships and dating,’ she says.
‘That’s when I realised there was a really serious problem, because I wasn’t experiencing attraction.’
More than a decade after taking fluoxetine, Katie Collingwood, 35, from the North East of England, says her symptoms have never completely gone away
At the time, however, she did not suspect that the sexual dysfunction could be linked to the antidepressant.
After three years, Katie stopped taking fluoxetine because she had never planned to remain on antidepressants long term.
Yet she says her libido and ability to experience pleasure never returned.
Now 35, and more than a decade after first taking the medication, the woman from the North East of England says she continues to live with the effects.
Last year, after researching what she was experiencing, she received a private diagnosis of post-SSRI sexual dysfunction, or PSSD. The little-understood condition can involve sexual, emotional and cognitive symptoms that continue long after antidepressant treatment has ended.
PSSD may include reduced genital sensation, loss of sex drive, an inability to orgasm and difficulty experiencing pleasure through everyday activities or relationships.
Until recently, health officials had debated whether PSSD existed, pointing to the limited evidence available.
However, it was announced today that patient information leaflets for some antidepressants will be updated for the first time to include the term PSSD and explain the possibility that symptoms may continue after treatment stops.
The updates follow an extensive review launched by officials after patients and their families raised concerns about the long-term side effects of antidepressants, which are taken by nearly nine million people in Britain.
Katie says her greatest concern is the belief that she may not have needed antidepressants in the first place. She is now urging people considering the medication to think carefully before taking it.
‘I was robbed of the chance to have normal developmental experiences and relationships, to establish my identity and experience my own life,’ she says.
‘I wasn’t warned about any of the temporary risks, never mind that this can be permanent in some people.’
So, what exactly causes PSSD – and can anything be done to treat it?
The most commonly prescribed antidepressants in the UK are selective serotonin reuptake inhibitors (SSRIs), which include sertraline, citalopram and fluoxetine.
They work by blocking the reabsorption of serotonin in the brain, increasing active levels of the neurotransmitter to help regulate mood and emotion and are used to treat conditions such as depression and anxiety.
Studies show that, for millions, antidepressants can be life-changing, as they ease depressive episodes and boost mood.
However, they are not without side effects.
The most common complications include nausea, indigestion, insomnia and headaches.
But there are also more severe risks. In recent years, there has been growing concern over the link between antidepressants and suicidal thoughts.
In 2024, Thomas Kingston, a 45-year-old financier and husband of Lady Gabriella Kingston – daughter of Prince and Princess Michael of Kent – died by suicide after experiencing adverse reactions to a prescription antidepressant, sertraline.
Following his death, a coroner issued a warning that patients should be aware of the risk of suicidal thoughts before beginning the tablets.
Health officials have also long been aware of reports of patients suffering long-term sexual dysfunction after beginning antidepressants – but, until now, that link has been hotly contested.
Experts say this is because depression itself can reduce libido and make it harder to become aroused or reach orgasm.
Temporary sexual side effects – such as a loss of libido – are also recognised complications of antidepressants, and doctors assume that, once patients come off the tablets, the symptoms will subside.
‘The sexual side effects of SSRIs while people are taking them have been well known for decades,’ says Dr David Healy, a psychiatrist and founder of the drug-safety website RxISK, who has written extensively about PSSD.
‘What has taken much longer to recognise is that, in some cases, these problems can persist after the medication has been stopped.
‘For years many doctors assumed that once the drug was out of the system any sexual side effects would disappear.
‘It’s only gradually that awareness has grown that, for some people, symptoms can continue long after treatment ends.’
Experts say that another issue is that it is unclear why PSSD occurs in some patients and not others.
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‘We know that SSRIs cause emotional numbing and sexual dysfunction while you’re taking them, but we don’t know why those effects persist in the long term,’ says Dr Joanna Moncrieff, a professor of psychiatry at University College London.
‘It’s possible that the drugs could lead to some permanent or semi-permanent damage to the brain, but we don’t know that yet.’
‘The condition is bigger than just sex. It impacts a person’s entire life,’ says Katie
Current medical evidence shows that no reliable specific risk factors or demographic predictors have been identified to determine who will develop PSSD.
Katie says her GP never told her the sexual problems could be a side effect of the medication.
And when the issues began, she says doctors attributed her symptoms to low mood and trauma, rather than identifying a possible link to the medication.
She says she wasn’t offered a clear solution and had to keep pushing for therapy referrals; in the meantime, she was referred to talking therapy, which she says did not help.
Coming off the medication was always part of her plan as she didn’t want to remain medicated indefinitely.
She says that, when the symptoms persisted, she did not initially realise that the antidepressants were the cause.
It was only after several years of no improvement that she learned about PSSD.
Katie believes this delay in getting a diagnosis came partly from not being told that sexual problems could be a side effect of fluoxetine.
‘I went back to the doctor when I realised and said I have a sexual issue,’ she says.
‘The doctor didn’t tell me that it’s actually just a common side effect.’
Katie says that when she raised the issue, doctors attributed her symptoms to low mood or trauma and didn’t investigate the medication link.
‘I had to push and push for different therapies,’ she says. ‘I asked if I could have trauma therapy and sex therapy as well.
‘I just kept getting referred for them and never hearing back.’
‘I Googled my symptoms, and I discovered that PSSD was a thing.’
Although her GP referred her to a specialist, the wait was 12 months, so she chose to pay for a private consultation, where the diagnosis was confirmed.
Experts stress that PSSD remains a rare condition, but suggest that patients always discuss the risk with their GP before beginning treatment.
Professor Carmine Pariante, spokesman for the Royal College of Psychiatrists, says: ‘Antidepressants are effective at reducing the symptoms of moderate to severe depression, particularly when used in combination with talking therapies.
‘Patients should discuss treatment options with a qualified practitioner, including the benefits, risks and side effects, to ensure they fully understand and accept the treatment proposed.’
Experts also say that, in many cases, recovery from PSSD is possible.
Some individuals experience a gradual, natural return of function over time without specific medical interventions.
Studies show that, on average, patients see their symptoms ease within three-and-a-half years.
Under the care of specialists, some patients find relief through targeted therapies.
These can include hormone drugs, such as testosterone therapy, as well as pelvic floor physical therapy – exercises that strengthen the muscles in the pelvis.
Dr Healy says he has seen people regain sexual function years after stopping antidepressants.
His own research suggests that for most, symptoms ease within three and a half years. For others, it can take as long as a decade.
‘Recoveries do happen. We need more research to understand what is causing the condition and how it can be treated.’
However, research also shows that, for some, PSSD can last as long as ten years.
Katie says that, so far, nothing has helped ease her symptoms.
She has joined support groups, which have helped her feel less alone, but not improved her symptoms.
She also avoids alcohol, caffeine and painkillers because she has found some substances can worsen her symptoms.
‘The one thing that I wish I could do is go back in time and not go to the doctor and just carry on the way that I was,’ she says.
‘PSSD has impacted my entire life with identity loss and loss of developmental experiences, loss of ability to form relationships and damage and misunderstandings in existing relationships.’
Katie also believes, in retrospect, that she did not need antidepressants, and earlier support might have helped her address the difficulties she was facing.
‘If I’d had therapy for six months, I could have then just moved on and been on my way and got on with my life.
‘My emotional spectrum is way narrower than it was before I took the pills and I’ve actually been defined by the absence of those experiences.
‘The condition is bigger than just sex. It impacts a person’s entire life.’
