Have you heard of Post-SSRI Sexual Dysfunction
People should not be shamed for taking the medication they want. This much virtually all people agree. But they should be able to take medications, such as those for mental distress, based on free and informed consent. That informed consent requires robust and reliable information about how medications are intended to work as well as their potential short and long-term negative impacts.
And yet, we routinely fall below this standard in the mental health sector. Each week there seems to be new studies overthrowing evidence of either the effectiveness of interventions, or the explanations underpinning them. We all heard those explanations of a ‘chemical imbalance’ in recent decades, with pharmaceutical companies marketing the narrative while knowing it was untrue. We also constantly hear of a minimisation of the harmful impacts of psychopharmacological interventions. And yet each time, we circle back to the same professionals and industry bodies for answers, when they were the ones that created (and benefited from) this mess.
The latest expression of this sad irony is being surfaced by advocates surviving ‘PSSD’. Short for Post-SSRI (serotonin selective reuptake inhibitors), PSSD refers to a broad range of sexual problems that can emerge from SSRI use. With rising use of SSRIs and other antidepressant medications, it is something that we need explore more fully.
Rosie reached out to me a month ago following the release of Not Before Time. Rosie told me that she, and many people she knew, were suffering in silence from PSSD. With little research and minimal public attention, we have this discussion to prompt a broader community discussion and government investment in researching PSSD. At the forefront of these conversations and decisions about the research should people impacted by PSSD. Noting I am not an expert in the evidence on this area, I wanted to provide Rosie the opportunity to talk about this issue in her own words.
So why are you passionate about advocating about PSSD?
I developed PSSD back in 2020 from taking Lexapro for not even 5 months. I was only on a low dose of 15mg, my max dose was 20mg for 6 weeks during that time period. But it was enough to completely destroy my brain and sexuality. PSSD is, without a doubt, the most dehumanising, demoralising and devastating issue I have ever faced. This issue has absolutely ruined every single day of my life since.
Writing this on July 17/2023, after stopping the drug on Dec 07/2020, means that I have been suffering with PSSD for 952 days. This disease is a prison sentence. There are literally no words to convey just how bad this is. When this first happened to me, I lived off false hope that it would just get better, and I would just spontaneously recover. However as time went on, I realised that is nothing but delusional thinking, and that this injury is so profound, the only way that I will ever get out of this is through medical science. I’ve heard another sufferer describe having PSSD as being in some kind of “open prison” where i can move around, but my brain is mentally deadlocked.
There is nothing I can do to get pleasure out of anything. If there was someone you hated, and you wanted them to really suffer, have their human dignity stripped away, and essentially just rot in hell every day for the rest of their lives with no help, then you would wish and pray that they got PSSD, because that’s essentially what this is. As a woman, your sexuality is dismissed as some kind of an unimportant extra that serves no biological purpose. However, after having PSSD, I can assure anyone who is reading this, just how important it is to exercise autonomy over your own sexuality. If you are taking a medication, and you know you have sexual dysfunction and no libido, get you are aware of this and believe the medication is worth more, then that is absolutely okay because that is your choice. You are consenting. I did too. However when you then decide you have had enough of the medication and need a break, yet you are unable to make this really horrible problem stop, that’s when we run into trouble. and the level of trauma that occurs when you are affected sexually in a way you did not consent to makes all the differences.
Noting that this is under-researched, what can you tell us about PSSD? How is it currently understood?
PSSD stands for Post-SSRI Sexual Dysfunction, however as horrific as the sexual dysfunction is, this disease gets a hell of a lot worse. Many PSSD patients, including myself, as also left with a plethora of extremely life ruining symptoms that have absolutely nothing to do with sex. It’s as if our synapses are no longer fused in our brain anymore, like the neural signalling is so down regulated that we are unable to process human emotions. I know of people who have not been able to cry for decades. In a modern day world, psychiatric medication injuries are the 21st-century version of Roman torture. Having PSSD is psychologically intolerable, and completely debilitating. It robs you of your ability to connect socially, sexually and romantically. It basically leaves you feeling locked out of the good parts of life. This has lead me to daily suicidal ideation. I still remember how good all these feelings were, but I can no longer feel them. The only thing I have left is despair and frustration.
Noting that this is under-researched, what can you tell us about PSSD? How is it currently understood?
The reason no one knows about this is because up until the last couple of years, any person who reported this was simply not believed. This is why medical gaslighting is so dangerous, because now there are thousands of us, potentially hundreds of thousands who unknowingly took these drugs and became permanently chemically castrated. I think people need to know just how serious PSSD is if you do get it. This disease is not some natural transient period of asexuality that people go through in life and then go on rediscover their sexual identity. You feel lobotomised, I have no emotions, it feels like the world has been put on mute. The genital numbness effect for many of us is also much more severe of extreme than what you would expect from just a long term effect. It’s as if someone has actually injected lidocaine into my genitals. I can use the sharpness of my fingernails to pinch myself and not feel pain down there anymore. If I touch myself down there, I can only feel sensation on my fingertips, I cannot actually feel my genitals at all. It’s something I just can’t even describe. Myself and even my neurologist beloved this is peripheral neuropathy of the genitals because it feels like I’m touching glass, or another object and not a body part, and it doesn’t get better. In fact, my symptoms have gotten worse over time. Another thing that people need to know is how this unique cluster of symptoms could drive even the strongest person to suicide. We feel completely locked out of life, locked in our own bodies and desperate for a way out. This symptom profile makes life, quite frankly, intolerable. Intolerable in a way that my depression, anxiety and OCD put together was not even capable of making me feel.
What don’t we know about PSSD?
As far as I’m aware, this condition is severely underreported, however, I was in contact with Maryanne DeMasi recently who sent an email to the TGA and this was their response “The TGA is aware of the evidence for persistent sexual dysfunction after treatment with SSRIs and SNRIs and actions taken by the EMA and Health Canada. The TGA is actively considering appropriate regulatory actions in response to our own review of the evidence, noting that the Australian PIs of some SSRI and SNRI products have already been updated by the relevant sponsors”. I guess they just decided to keep this information to themselves rather than informing the public or the medical professionals prescribing these drugs. It’s very frightening that they are aware that this can happen yet have chosen to remain completely silent. We are giving these drugs to children and teenagers. I’m pretty sure parents would like to know what they are giving their children as well.
What have you heard from industry or professional bodies here in Australia about PSSD? Is it on the radar?
PSSD is starting to become a lot more known on social media, and even mainstream media outlets have finally started to talk about it. BBC panorama UK recently made a documentary on antidepressants which featured a segment talking about PSSD. You can watch the BBC panorama segment here:
https://twitter.com/pssdnetwork/status/1670892360106999808?s=46&t=2V6Yli9UDneZ9jjQGnro0A
It’s been extremely difficult to get people to speak up about it. It feels like for every 50 journalists we contact only 1 replies. I think some journalists are afraid of the PSSD topic, because it threatens the prevailing narrative of “de stigmatising mental health”. It oftentimes feels like ideology is favoured over complex and difficult stories like ours.
If you had the ear of researchers, what would you want to say?
I would tell them that this research could solve fundamental questions about sexuality across males and females of several different species. We could also learn so many things about human emotions just from studying people who have had theirs completely removed (PSSD patients) and comparing them to those without PSSD.
If you had the ear of government’s, what would you want them to do?
Governments basically pushed these drugs on citizens. Governments spend money to develop treatments for lung cancer, even though they discourage smoking. It’s absurd that they don’t fund PSSD research. We urgently need funding for research, and mandated informed consent around PSSD. All myself and anyone else in this community wants, is a treatment that fixes these hellish symptoms.
How you can help make a difference
Rosie regularly helps as a volunteer for PSSDNetwork.org – which is run by a group of sufferers and their loved ones. Its mission statement is: ‘At PSSD Network we aim to raise awareness of Post-SSRI Sexual Dysfunction as well as accelerate research, whilst also offering patients and loved ones support when it is needed. Furthermore, we want to provide a platform where people can find information on everything there is to know about PSSD.’
Here you can find support groups, donate to ongoing research and read content such as the stories in ‘patient spotlights’. The charity's goal is to grow @PSSDNetwork’s following so that hopefully one day, those with the power to do something to protect the world’s 100+ million SSRI and SNRI users, will take action, and might even help find a cure. Please join them if you can.
