Editorial Note: I saw my first case of Post-SSRI Sexual Dysfunction (PSSD) 15 years ago and since then have met 10 or more people with it and corresponded with many more. There is a striking consistency to the clinical picture across sufferers caught in the account below. There is no doubt that serotonin reuptake inhibiting drugs cause this and can do so after as little as one week’s exposure. PSSD affects men and women and almost certainly the puberty of some teenagers put on SSRIs.
Tony Csoka was one of the first people to put PSSD on the medical map. Since then groups have formed including SSRIsex on yahoo groups and PSSD forum. The community of sufferers have gotten together and researched all the obvious possible remedies from dopamine agonists, to viagra, serotonin antagonists and hormones but nothing has been the answer so far. When we tried a previously untried remedy some weeks ago, people volunteered to come from as far afield as Holland and Brazil in the hope of some relief from this curse.
In the movie The Mummy, as a result of his sexual expression the High-Priest Imhotep is told there is something worse than death, the Hom-Dai, and is buried eternally alive. PSSD is a modern equivalent of the Hom-Dai. We need to find an answer. (DH)
This all began in 2005, I was married and life was pretty normal. I was feeling low and tetchy so I went to see my doctor. I was diagnosed with depression and prescribed a 10 mg daily dose of Cipralex. I started to develop severe sexual side effects within three weeks, a point from which there has never been any remission. I tolerated the drug for a few months but decided to discontinue it. I wanted to feel human again, and I was concerned that if I took the drug for a long period of time it would harm the marriage. I’d missed my sexuality. I was expecting it to return, but it didn’t. As the days turned to weeks I became scared. Surely it would come back?
I have suffered from Post-SSRI sexual dysfunction (PSSD) now for 7 years. When I speak to people about PSSD, I never use the terminology ‘sexual dysfunction’. I always explain PSSD as a complete loss of sexuality. I tell people that I have lost my identity.
PSSD causes many distressing symptoms. I have no libido; there is no drive there at all, no desire or lust, no propelling force of nature. I can’t remember what it feels like to be sexy and horny, I know it was powerful but I’ve not felt it for years. I have a serious case of erectile dysfunction and trying to get aroused is usually futile. I have a next-to-nothing response to sexual stimuli. I experience very little sensation and my orgasms are weak. I don’t experience sexual fantasies or dreams, neither do I experience normal dreams. My genital area is numb, almost as if doesn’t exist. I’m only really aware that there is something between my legs when I need to urinate. This sexual annihilation is devastating enough, but the feeling of isolation and lack of interest in life that it leads to are equally as bad, if not worse.
I took my concerns to my doctor, and so began many years jumping through the hoops of the medical system. I saw three doctors, two psychologists, a psychosexual specialist and a urologist. I underwent some unpleasant procedures and had a copious amount of tests. I was sent for a pelvic and abdominal scan, and a cystoscopy. I tried Cialis and testosterone injections. The doctor that prescribed me the antidepressants said that it was “impossible” to suffer any long-term symptoms caused by SSRIs. The urologist completely ignored me when I described the timeline of events.
I heard many reasons for my condition. I was told I had male menopause. I was told that I was working too hard when I had a job; and then when I didn’t have a job it was the fault of being unemployed. I was told that I needed to be with someone new; or that society had made me feel inadequate, and countless other excuses. I knew all these explanations were false, I knew it wasn’t in my head.
I look back at all the appointments I have had and it makes me laugh – my loss of sexuality was blamed on everything except for the obvious culprit.
I felt so alone; nobody was listening to me or could help me. In the eyes of the people that I sought help from I didn’t have anything seriously wrong. One of the doctors suggested that even if the drugs had caused this condition, then it wasn’t as bad as other side effects. I’d like some of these people to experience PSSD for a month, and then try and insult my intelligence. Seeking help was a demeaning experience that only compounded the hell of living with this condition.
My marriage ended in 2009. With PSSD I had not only lost the need for sex and the ability to have sex, I had also become apathetic to any kind of intimacy. I literally had no interest in any physical connection, and with that the emotional connection wasted away. I had become passionless and unresponsive to someone that I previously couldn’t resist. On the few occasions I tried to force the issue, it was degrading and embarrassing.
Removing something so fundamental is always going to create a ripple effect, and PSSD is no different as it causes a feeling of impassiveness about life. These days, life seems to be something other people do, something I observe but I don’t partake in. I feel detached from my true self; isolated from society and distant from other people. I am unmotivated as I am unable to seek pleasure; I live a mechanical and soulless existence. Without the desire that once drove me I merely go through the motions. There is no real excitement or fun, no spark or special feeling inside, no spring in my step – something intrinsic to human happiness is missing from inside me. I used to put on a brave face and throw myself out there as much as possible, but it wasn’t real. My life is more hermit-like now because I don’t want reminding of what I’m not.
My sexuality used to define who I was; it shaped my personality, it influenced how I expressed myself, how I dressed, talked, acted and interacted. It drove me; it enabled me to fulfill my physical and emotional needs. Without it I feel lost, empty and lacking direction, and that I’ve been eliminated from the game of life. My confidence and ego have been crushed. PSSD is so profound in its all-encompassing nature, it runs so much deeper than a collection of symptoms. It’s a very scary thought that I probably won’t ever be me again, and I have moments of real fear when I think what I’ve lost. To live with PSSD is to live a lie.
I went to my doctor for help and ended up in a horrible place; a place that I did not think could even exist. I was given a drug that ruined my life. The medical system violated my trust and my body. They took advantage of me during a period of weakness; and then they left me on the scrapheap.
“Sex isn’t everything” – I hear that a lot. Well, my sexuality was everything to me.
If you are suffering from PSSD, you can report it to us by completing a RxISK Report, even if you aren’t interested in the causality score or taking the report to your doctor.
Please provide as much detail as possible, including the dates that you started and stopped the drug.