Ellen’s Story

I am 48-year-old Canadian woman who started taking antidepressants (first tricyclics and later SSRIs) in my early teens. Unlike many others, I did not experience sexual side effects while taking these drugs over many years (a few decades, in fact). I had a healthy sex drive and was able to reach orgasm easily. However, in my early thirties I suddenly lost my libido and ability to climax. While tapering from Paxil, I experienced severe withdrawal symptoms (nausea, dizziness, brain zaps, total insomnia, etc.) that lasted for several months. In early phases of withdrawal, and despite how sick I was feeling as a result of my withdrawal symptoms, I experienced a brief, intense surge in libido (duration of a few weeks). My libido then suddenly disappeared, never to return. It just seemed to vanish in an instant, like someone flipped the switch to “off,” and it has just stayed there.

I have discussed this issue with several doctors, but my problems have been dismissed as hormonal (I’ve been tested; everything’s normal) or psychological. When I tried to discuss my situation with a former psychiatrist, she insisted my lack of sex drive was a reflection of problems within my relationship. I was not in a relationship at the time my libido vanished, and many of the problems in my current relationship stem from my lack of interest in sex. When I embarked on this relationship (about a year after stopping Paxil), I didn’t know that my condition would be permanent. I kept hoping things would return to normal. Again, my sexuality was quite robust and healthy before my withdrawal experience. Fortunately, my now husband has come to understand the cause of my sexual dysfunction, and he has, so far, remained with me. But I feel guilty for holding him in a relationship that is sexually unfulfilling for both of us, and I fear that he will one day leave. I wouldn’t blame him and have told him so.

In addition to the loss of libido and sexual sensation (numbness of genitalia and other erogenous zones), my general sensitivity to the pleasure of touch has declined. A caress on bare skin registers as little more than pressure. Again, there is a feeling of numbness, as if there is some kind of barrier between my skin and the source of contact. I also feel emotionally detached and numb, whereas before I was able to experience real joy and laugh deeply, despite my long-standing difficulties with depression. Life has been reduced to going through the motions. The downs are no longer punctuated by moments and periods of ups. I have become socially withdrawn and thoughts of suicide often play on my mind.

I believe most doctors are unaware PSSD exists and tend to discount any symptoms that aren’t acknowledged in the literature published by the drug companies. And with patients who have mental health issues, it’s easy to dismiss just about anything as being “all in the head.”

When I brought some literature on PSSD to my former psychiatrist, she refused to even look at it, dismissing it—and my concerns—as “ridiculous.” I have also raised it with my current GP, but he’s not interested in hearing about it.

I was similarly dismissed many years ago when I complained to my treating doctors (GP and psychiatrist) about the “brain zaps” I experienced when taking Effexor, a new drug at the time. I was assured that my symptoms couldn’t possibly be caused by the medication, and I was even sent for a CAT scan to see if there was a neurological reason for the electrical storm that seemed to be going on in my brain. Of course, brain zaps have since become a well-known and recognized side effect of certain SSRIS/SNRIs, particularly on withdrawal. The same needs to happen with PSSD, and patients need to be informed of the risks and side effects of psychiatric drugs before they start taking them. Furthermore, individuals whose lives and relationships have been negatively and permanently impacted should be compensated by the pharmaceutical companies for the irreparable damages caused.

Thank you for listening to my story.

Ellen