“My PSSD Story”

My name is Sean; I am a 23-year-old male from the USA. As a typical college student, I enjoyed spending time with my friends and family. After graduating, I have now been spending time doing something that I would have never expected, and that is raising awareness to get help for my horrifying condition, PSSD.

During the COVID pandemic in 2020, I was experiencing more anxiety than usual. I had always been an anxious person, so getting help for that was on my to-do list. At the time, therapists were fully booked. Due to the inability to find a therapist, I confided in my doctor who was down the street. I made an appointment to discuss my concerns, and within a 15-minute consultation, my doctor diagnosed me with Generalized Anxiety Disorder (GAD) and prescribed fluoxetine, more commonly known by its brand name, Prozac. At no point did my doctor inform me of the possible side effects associated with Prozac.

Within 3 months of the 20mg Prozac tablet, it appeared it wasn’t doing much, if anything at all, to lift my anxiety. It was pretty much ineffective. After speaking with a nurse via telephone, I decided to taper off by following her guidance. She told me to split the pill in half and take it every other day for the next couple of weeks, then stop once it ran out. I suffered no withdrawal symptoms or other side effects during my tapering regime.

After hearing from multiple people that it takes a couple of tries to find the right medication, I gave in again and went back over a year later to try another SSRI. This time it was Citalopram at 10mg per day. This new doctor diagnosed me with obsessive-compulsive disorder (OCD). Once again, I was not informed about any possible side effects Citalopram could pose.

Within an hour of taking the first pill, my genitals were completely numb. In the hours following, I experienced intense brain fog, and I was losing my range of emotions and sexual function. At this point, I was panicking and had a mental breakdown.

When I woke up the next day, I felt like I was dead, as if my soul had been removed from my body. Music became nothing but a sound. The best way to describe it would be like making an animal listen to music; they don’t understand it. I felt nothing from seeing my family, no more love or empathy, no more happiness–just nothing. My entire life has just been shot down from one pill of an SSRI. I thought to myself, how is this even possible?

After becoming suicidal from this experience, I tried turning to alcohol. I didn’t think it could get any worse, but it did. I couldn’t feel the effects of the alcohol I was drinking; I literally had no escape.

I went to see my doctor and explained how unlucky I felt for experiencing this after my first day. I was told I was experiencing depression. I knew for a fact that this was incorrect. Genital numbness is not a symptom of any mental illness. I experienced depression as a teenager and told the doctor that it felt nothing like this. After I was given another antidepressant, I threw it away and researched what I was experiencing.

Within a few hours of searching, I first came across the PSSD Reddit page. That was the day I learned I was experiencing post-SSRI sexual dysfunction (PSSD).

I prayed for my body to return to normal as I distracted myself from suicide daily. I almost felt as if I became asexual overnight. I had no libido and no attraction to anyone. There was suddenly no bond that could be formed. I also tried talking to my friends at school and felt like I was talking to a wall. There was no connection to anything.

After seeing multiple doctors and informing them about this, they all became defensive and tried to put me on more antidepressants, I felt so violated. I was shocked that PSSD is not even listed as a side effect in the USA.

Fast forward to 2023, as I now write about my experience, I have seen no improvements in my PSSD symptoms. The fear of this lasting forever has become a reality, and the only way that the thousands of us suffering can escape from this is through research. Having to fund all of this on our own is disgusting, but we don’t have a choice as we are still being ignored by the FDA as well as many doctors and psychiatrists.

Recently, a documentary about antidepressant withdrawal was released by BBC Panorama. The documentary mentions PSSD and those of us who have been left to suffer are also left with no answers. In the UK, the MHRA and Royal College of Psychiatrists have received reports of PSSD since 1991, and yet neither of these organizations has addressed it. In 2018, a petition was made to the FDA asking to include PSSD somewhere on the labels, yet we are still being ignored. Technically, the only action so far has been from the European Medical Agency, whose 2019 updated SSRI label now states that ‘enduring sexual dysfunction may persist’; however, there is no mention of permanent genital numbness and debilitating emotional blunting.

There has been some recent literature containing one study that estimated the prevalence of PSSD to be 1 in 216. Nowadays, this should be alarming as millions of people are taking antidepressants, and the majority of them are not being informed of this serious risk. Upon writing this and speaking for those living with this, I want to say that many more voices have yet to be heard. These people including myself are embarrassed and humiliated by what has happened to us. It took me a full year to tell anyone what I was going through, so we really don’t know the exact prevalence yet.

That being said, no matter how small the chance of PSSD might be, the thousands of sufferers, including myself, can promise whoever is reading this that it is not worth it. We need treatment for this, no innocent soul should have to go through a life of endless torture and emotional and physical feelings of “nothingness”. The PSSD community has every right to be frustrated about what has happened. This scandal needs to be addressed urgently and fixed.