Anna* was always taught doctors and the medical system were there to help, not harm. That’s one of the reasons why she got into the medical field herself.
Now she feels a cold sense of betrayal after becoming a forgotten victim of a drug prescribed to millions of Australians – many of whom now live with regret.
Anna was prescribed the antidepressant Lexapro in 2020 after experiencing a bout of the lockdown blues during Covid.
The drug, the sixth most commonly prescribed in Australia with almost six million scripts, immediately caused devastating and, to this day, irreversible side effects.
Even now, describing the physical impact can be painful. But, in her characteristically blunt style, Anna says she has been ‘chemically castrated’.
Now in her mid twenties, she should be enjoying a healthy, normal sex life. But after taking that first Lexapro pill over four years ago, she began experiencing severe genital numbness, as well as a number of other debilitating side effects.
Perhaps even worse than the total loss of sexual sensation is the callous disregard of doctors and, indeed, the entire medical and pharmaceutical industry.
‘You just feel like you have been completely abandoned,’ she tells me. ‘I just feel like a science experiment that went wrong.’
Anna, not her real name, was prescribed the antidepressant Lexapro in 2020 after experiencing a bout of the lockdown blues during Covid. She says the drug has left her ‘chemically castrated’ (photo posed by models)
It can be hard to describe the sexual numbness that a small number of people who take antidepressants experience – but Anna does so with visceral precision.
‘I lost not just sexual sensations but tactile sensation,’ she says.
‘When I am peeing, I literally can hardly feel it. I literally could get a nail clipper and clip off part of my downstairs and I would not flinch.’
Anna, like so many others, became depressed during Covid lockdowns. She lived in Melbourne, the most locked-down city in the world during the pandemic.
Her story is a common one: her life as she knew it was ripped from her and, in the depths of isolation, she sought help from her GP, who referred her to a psychiatrist.
The psychiatrist was ‘really kind, really professional’, so she didn’t feel anxious when they suggested she ‘try an SSRI’.
After a brief discussion about the available drugs, the psychiatrist decided on Lexapro.
SSRIs, or selective serotonin reuptake inhibitors, refers to a class of drugs that works on the theory that depression is caused by a lack of serotonin.
Despite the ‘chemical imbalance’ theory being challenged by recent research, SSRIs remain the basis for some of the top-selling antidepressants in Australia, including Lexapro, Prozac, Zoloft and Venlafaxine.
Australia is a cash cow for pharmaceutical companies that make SSRIs. An astonishing one in seven Aussies take them, or 3.5 million. This is one of the highest antidepressant prescribing rates in the world.
In fact, it was the popularity of SSRIs that made Lexapro seem like a legitimate, even attractive, treatment option to Anna.
‘The suggestion was that I was experiencing was a chemical imbalance,’ she says.
‘I thought, “Well, that has to be the case because I can feel the chemical imbalance in my brain.”‘
Lexapro (pictured), the sixth most commonly prescribed drug in Australia with almost six million scripts, immediately caused devastating and irreversible side effects, Anna claims
The drug did come with some warnings, however.
Anna was told of the increased risk of suicide in the first two weeks, as well as the tiredness, nausea, weight gain and dry mouth. All unpleasant symptoms, but also common side effects of many drugs.
Although she naturally had some concerns, Anna reasoned that if Lexapro had any serious, lifelong side effects, it ‘wouldn’t be on the market’.
This proved to be a serious miscalculation.
She started on 5mg then went up to 10mg after the first week, as instructed.
‘Literally as I started taking it, it was like all hell was breaking lose,’ Anna tells me. ‘I started to have these sexual problems that were very profound.’
She compares the sudden and total loss of sexual desire and feeling to waking up one day and no longer being able to see colour.
‘That part of your brain has been literally switched off. I remember thinking, “This is weird. I have no sex drive”. All of this emotional blunting came on within an hour.’
After six weeks, Anna went back to her treating psychiatrist. She says her complaints about her sex life were ignored and the psychiatrist suggested upping the dose.
Despite her doubts, she agreed to increase her dose to 20mg – four times the potency of her initial prescription.
‘He’s got all these accolades on the wall. He’s a very professionally dressed, nice man. He seems to know what he is doing,’ Anna tells me.
‘I thought, “This is the time I have to take my hand off the wheel and let someone else help me”.’
Anna was told the drug could take up to eight weeks to work. But she was never warned the side effects begin from the moment the pill touches your mouth.
Crucially, she was also never told of the possibility of sexual dysfunction – or the fact it can be permanent.
‘I have only had sex once since this happened and it was so traumatising, humiliating and embarrassing that I haven’t had sex since,’ she says
As SSRIs became commonly prescribed in the 1990s, a number of patients began to experience genital dysfunction and loss of libido, along with other symptoms, which led to the condition gaining a medical label: post-SSRI sexual dysfunction (PSSD).
The mechanism that causes these effects is not understood.
For Anna and others like her, their only option is to learn to live without sex, which is especially hard when you’re young and starting new relationships.
‘My sex drive is gone,’ Anna admits today.
‘I am pretty sure the drug has done something to the nerves in that area. I have had biopsies, I have had nerve conductions done.
‘There is something neurologically wrong. I would love to get brain scans that would show stuff like this, but it is so niche. It’s this feeling like, “Something just broke”.’
Although Anna considered herself single at the time she was prescribed Lexapro, she had ‘something going with this guy’ but her PSSD ‘basically destroyed it’.
‘I have only had sex once since this happened and it was so traumatising, humiliating and embarrassing that I haven’t had sex since.’
In addition to her genital numbness, Anna endured poor vision, ringing in her ears and brain fog. Her eyesight in particular has never been the same.
In a painful irony, she isn’t feeling sadness as much anymore. Not because she is happy, but because she is simply no longer capable of feeling strong emotions at all.
After six months on a 20mg dose of Lexapro, Anna went back to her psychiatrist and told him bluntly: ‘I feel like I have no soul. I am so numb.’
Incredibly, his response was to – again – up the dose.
He also attributed her low libido to the fact she was still depressed, and said her sex drive would return once the fog of depression lifted.
But by this time Anna had empowered herself with her own research and knew she was most likely suffering from PSSD.
She refused the increased dose and decided to come off Lexapro. Her psychiatrist, however, refused to give her guidance on how to taper off, so she did it by herself.
Meanwhile, she visited her GP who assured her SSRIs could not cause such severe sexual dysfunction and instead suggested she was neurotic and should try breathing exercises.
In May this year, Australia’s pharmaceutical watchdog, the TGA, finally updated its warning labels on all SSRI drugs to state clearly they can cause persistent sexual dysfunction. This warning also applies to similar SNRI medication (stock image of a pharmacy)
Anna’s symptoms didn’t improve once she got off the drug. The reverse happened.
When she confided in loved ones, they refused to believe her when she said she’d been effectively chemically castrated by Lexapro. Her home life became fraught.
‘They would laugh at me and say, “You are not castrated”. I was literally screaming at them. I was so angry. I was so sexually frustrated as well.’
For Anna and other PSSD sufferers, the side effects of antidepressants are far, far worse than the depression it was meant to cure. In Anna’s words: ‘Yes, there was a problem before but this is an abomination.
‘Imagine you are playing football and you strain your calf, then the coach comes out on the field and rips it off the bone. That is what it’s like.’
Anna was astounded by the stunning lack of awareness among doctors who prescribe these drugs about the sexual dysfunction side effects, or the fact there are three other medications besides Lexapro that cause it.
The last time she spoke to the psychiatrist who prescribed her Lexapro was in 2021. Even after everything she had been through, he still did not believe her.
He ‘glossed over it’ and continued to insist her sex life would return ‘to exactly how it was before’. More than three years later, her problems persist.
In a classic example of medical gaslighting, the psychiatrist told her it was ‘all in her head’ and that the side effects were the result of her initial worries about the drug.
‘He spoke to me on Zoom for 20 minutes and sent a $420 bill straight after.’
In May this year, Australia’s pharmaceutical watchdog, the TGA, finally updated its warning labels on all SSRI drugs to state clearly they can cause persistent sexual dysfunction. This warning also applies to similar SNRI medication.
‘We have received 89 reports describing sexual dysfunction with an SSRI or SNRI in our Adverse Event Management System database [to April 2024],’ the TGA stated.
‘Persistent sexual dysfunction after treatment is stopped is thought to be rare. However, these symptoms are likely to be underreported and their prevalence is not currently known.’
Anna is firmly of the belief PSSD is far more prevalent than reported. She also thinks doctors are still failing to warn patients before prescribing.
‘This information is not being disseminated to doctors to even be able to give informed consent,’ she tells me.
‘People feel so awkward bringing it up and doctors don’t ask – so then nothing gets reported and they say there are no reports.’
Anna also says the new labels don’t go far enough.
‘What happens to all the people who end up with PSSD?’ she asks. ‘Are you just going to say, “Well, it was on the pack so deal with it?” That’s not helping anyone.
‘It’s also too late for everyone who already had it. What does that do for us? We need people to find out what it is.’
Anna has tried many different approaches to treat her PSSD. None of them has worked.
‘There’s not really anything doctors can really offer. They don’t really know what is causing the symptoms.
‘Literally nothing works. Everything I have taken since has just made me feel worse.
‘Some have no effect at all. I have never had anything that improved how I felt.’
Living a healthy lifestyle has not helped either. Anna hasn’t touched alcohol in two years and uses no recreational drugs.
‘I go to the gym, I run three days a week. I work full-time. From the outside looking in, I look like everything should be going well,’ she says.
‘I am as physically fit as I have ever been, I eat so clean, I live the cleanest, healthiest life possible.
‘You would think exercise would be mood-boosting. It actually doesn’t do anything.
‘This is probably the hardest thing for me to have to accept – the fact this is so out of my control.’
The terrible aftermath of the drug has, unsurprisingly, left Anna questioning why she took it in the first place.
She now wonders if she ever had depression to begin with.
Looking back at the time of her diagnosis, she remembers seeing psychiatrists on YouTube talking about depression, which convinced her she had it.
‘When I was fed this information, it was all I could see. So I thought I must have this chemical problem because I can feel it.’
While she accepts depression is a clinical condition, she also believes it is being over-diagnosed – and finds the statistic that one in six Australians take SSRIs particularly hard to fathom.
‘You cannot tell me one in six people have a brain disease. It is obviously caused by a wrong lifestyle. A lot people just have unmet needs.
‘Some people just feel that what they are doing in life isn’t really meaningful and they start to question their own existence. “Do I even mean anything? Does nothing matter?” I wouldn’t say that is a disease.
‘If I had been able to go out and see my friends and form relationships [instead of going through lockdowns] I wouldn’t have been depressed.’
Even as Australia’s strict pandemic measures faded in the rear-view mirror, Anna was left with a permanent reminder of that traumatic time.
‘I feel like I never got out of lockdown because my whole body went into lockdown at that time,’ she admits.
‘I used to worry I was missing out on life because of lockdowns. Now it’s PSSD.
‘I am 25 and I have not had a real relationship. I look at my future and I really don’t know how I am supposed to live past 30.
‘I am seeing so many people I know getting married and having kids. And I also know people who have been stuck like this [with PSSD] for decades.
‘Instead of being excited for my future, everything is grim. All I can focus on is trying to find an answer and raise awareness.’
Anna is involved with a PSSD support group, which emerged from an anonymous online forum devoted to the little-known condition. It has members from America, the UK and Europe who are helping to build an archive of stories about the little-known condition and lobby for scientists to do more research.
Anna has heard harrowing things from other PSSD sufferers, including men whose penises, humiliatingly, have completely shrunk. She cites an American study that found fibrosis – or thickening or scarring of the tissue – in penile tissue among male PSSD sufferers. These men were all under 30 and otherwise healthy.
One man with PSSD confided in Anna that ‘you just lose erections’.
‘It is like a stroke victim tying to walk, you just can’t, there’s something not neurologically connecting anymore, so even if you do manage get it up, it just goes; you can’t sustain it,’ she says.
Inevitably there are PSSD sufferers who take their own lives. Anna knows at least five. It usually happens when they realise it’s never going to get better.
‘They start to think, “I am never going to get help. No one understands me, no one believes me”.’
*Name has been changed
