Andrew’s Story

Andrew, age 27

Canada

PSSD 2 years

To whom it may concern,

I am a 27-year-old male who is re-suffering from depression as a result of a condition unrecognized by the Canadian healthcare system. This condition goes by the name of “Post SSRI Sexual Dysfunction (PSSD),” and this document is written with the intent of getting PSSD formal recognition within North America. The name indicates that the condition results from taking Selective Serotonin Reuptake Inhibitors (SSRIs), but there have been many anecdotes related to this condition resulting from other classes of medications – my PSSD is a result of a Serotonin-Norepinephrine Reuptake Inhibitor (SNRI). Additionally, the name does not fully encapsulate the full experience as there are reports of cognitive and emotional symptoms, as well. PSSD has been officially recognized by the European Medicines Agency in the summer of 2019 – European patients must be warned of the possibility of persistent side effects. Canadian patients also have the right to know of the potential for side effects to linger, but this will only be possible if PSSD is formally recognized by our scientific and medical community. The following paragraphs will describe my experience with antidepressants, PSSD, and the consequences of the lack of recognition within the medical community.

I was formally diagnosed with major depressive disorder in December 2015. I was immediately referred to a psychiatrist and counselling services, where I discussed with my doctor my trepidation with taking medication. At first, I avoided taking antidepressants as I have heard stories detailing the negative impacts of the side effects, and the consequences of missing a dose. These stories, however, were your typical stories of having to deal with brain fog, brain zaps, and sexual dysfunction while on the medication. I was spending 20 hours in bed, I was eating one meal a day, and I started to have suicidal ideations while waiting for counselling services so I tried to address my exhaustion by taking a norepinephrine-dopamine reuptake inhibitor. Unfortunately, the medication did not help, and it was difficult to titrate up to a higher dose as a result of the side effects. Shortly after I stopped the medication, I had access to a psychiatrist, and I was given samples of multiple antidepressants throughout the next few months. To this day, I distinctly remember my interaction with my former psychiatrist. Even though I was made aware of this issue through the warning label, I was unhappy with the sexual dysfunction I experienced. It became an issue because despite how bad my day was going, I could always depend on feeling physically good through sexual release. Consequently, I brought this issue up with the psychiatrist, and the response I got was, “At least you are not dead.” This rationale made me think that my sexuality was unimportant for the time being. We discussed how this discomfort would only be experienced during the time I was on antidepressants, so continuing to take antidepressants made sense. Unfortunately, none of the norepinephrine-dopamine reuptake inhibitors, SNRIs, and antipsychotic medications were effective in treating my depression as the side effects proved to be too much for me to handle, or they were completely ineffective in treating my depression.

There was one medication, however, that I was able to increase the dose without feeling unbearably miserable, and ironically, it was one of the most notorious for side effects and discontinuation syndrome – Effexor (Venlafaxine). I started on Venlafaxine extended release in August of 2017 in hopes of addressing my lethargy and exhaustion. At first, I did not experience sexual dysfunction on the medication. I felt fine, and by combining Venlafaxine with Dexedrine (a stimulant), I felt functional enough to go back to university. I eventually stopped taking Dexedrine in February of 2018 as a result of the hypertension that it caused. Up until this point, I remember my libido was relatively high. I would have trouble sleeping during some nights as a result of my sex drive, and my mind drifted towards sex on a daily basis. I remember saying that I wish I could be asexual so I could fall asleep without any issues, but I deeply regret ever having those thoughts and speaking those, as I am now living a life with no sex drive, but not by choice.

Around December 2017, I first started to notice sexual dysfunction. At the time, I did not think it was a result of my medication because I was informed by my doctor that people would experience side effects at the start of dose increases. I had never heard of people developing side effects after they have been on the medication for some time, so I went to see a urologist. The issue was that I started to experience penile pain. Whenever I had an erection or was semi-erect, there was discomfort. The urologist suggested that it could be possible for my experience to be a result of the antidepressant, but it would be a low chance – he had not seen a patient expressing penile pain that was caused by antidepressants. Eventually, the penile pain subsided, but the sexual dysfunction progressed to less frequent erections, a lack of morning erections, mild erectile dysfunction (ED), a loss of sensation of the pressure when I became erect, and a nonexistent libido. I stopped engaging in all forms of sexual activity. During this time, I thought to myself that there would be no issue because I could just stop taking the medication and everything would revert to normal. I stayed on the medication until September of 2018; I was genuinely happy, and saw no reason for myself to continue taking the medication. I did not know that the happiness was contingent on the side effects of Venlafaxine subsiding.

After I tapered off my medication under the guidance of my doctor, I did not feel any better, sexually. I brushed off the delayed return of my sexuality as my body taking time to adjust to not having SNRIs every morning. I waited days, weeks, and months for some sort of return, but there was no sign of any sort of recovery. After seeing my doctor on multiple occasions in an effort to get to the bottom of why I was experiencing the loss of my sexuality, I convinced myself that I was depressed, and the loss of sexuality was a new symptom of my depression. I had a feeling that there was something more to my sexual dysfunction than just my depression, but I was worried of what it might mean if it was not my mental illness. After seeing my doctor, multiple urologists, psychiatrists, and a sexual health specialist, it is evident that the loss of my sexuality is a result of antidepressants since there is an absence of abnormalities in all of the tests that were performed. I am sure my mental health is not the culprit because I was genuinely happy for over a month when I stopped taking Venlafaxine, but there was absolutely no recovery of my sexuality. Additionally, the only sexual dysfunction I experienced while depressed was delayed ejaculation – my sex drive was healthy, I did not experience any ED, I could perceive pleasurable physical stimulation, and orgasms were pleasurable, prior to taking Venlafaxine. I was also unaware of PSSD until nine months after I had stopped taking my antidepressants. During that time, my experience could not have possibly been influenced by the nocebo effect. It has been incredibly difficult finding a support system where my issues are validated, and met with compassion.

After cessation of antidepressants, I found that I felt physically numb in my genitals and my erogenous zones, most notably in my glans. The positive sensations of physical stimulation were completely absent, as were the euphoric orgasms. Despite almost two years passing since I last took any antidepressant, I still do not experience any of the positive sensations of having an erection, any penile stimulation, or orgasms. There is an absence of libido and I am completely unable to become aroused, regardless of all the exercise I forced myself to do, and despite having a period where I was able to claw my way out of my depression after I stopped taking all medications. I have also not experienced any random erections or morning erections, and my ability to produce pre-ejaculate seems hindered, and the volume of semen per ejaculation has also diminished significantly. My orgasms started feeling uncomfortable, but it later progressed to no longer feeling like anything. I am aware that I am at an age where random erections are less frequent than when I was undergoing puberty, but there is something wrong with the fact that they never occur anymore, and the change was abrupt – not gradual. It may be viewed as trivial, but it is just one of the symptoms I noticed. Lastly, there have been visible changes to my genitalia. I have been bereft of a major part of life, and I am missing a part of my identity. I miss the passion, the anticipation, the excitement of being sexual, sexual intimacy, and most of all, I just miss being myself. There are other ways in which the antidepressants may still be affecting me, but I am unable to distinguish if they are a symptom of PSSD, or if they are a symptom of depression: I am experiencing lethargy, anhedonia, and I am having difficulty with memory retention and memory recall. To state the obvious, my quality of life has been significantly reduced.

There have been some struggles with raising the issue with healthcare professionals. I was met with disbelief, and doctors were constantly pushing the idea that my mentality was the cause of my symptoms. I understand where they are coming from because there are only a handful of articles that mention PSSD that have been published in reputable high impact journals, and there is a lack of scientific inquiry into the lasting effects of the many drugs that seem to cause these issues. As a result, allopathic medicine can only provide relief in the form of phosphodiesterase type 5 inhibitors (such as Viagra or Cialis) to help with the mechanical issues male sufferers face, but in my experience, there is no motivation for addressing ED when all the other aspects of sexuality have been stripped from me. Since the doctors are unable to provide a remedy for PSSD, I was told that there was more to life than just sex, which came off as a dismissal of my issues, and made me feel alienated. I completely agree that there are many facets of life outside of sexuality, but as a patient, I felt so defeated by the absence of treatment options, and by the lack of compassion and care by medical professionals towards my quality of life.

Over the last year, I have been trying to find a way to accurately describe my experience, but I am still struggling to do this. I have found a community of others with PSSD online. I see the term “chemical castration” being thrown around in an attempt to describe our experiences, yet I feel the term is misused. Perhaps my understanding of chemical castration is limited, but with chemical castration, you at least still feel your genitals, and I imagine that orgasms would still bring joy. I feel like my body is a shell of its former self; sex was one of the last things I could depend on to feel less robotic, but now I have lost my sexuality, and I am stuck in my head every day, carrying out tasks by going through the motions, hoping for my body to magically revert itself to a pre-PSSD state. There is an innate desire for organisms to reproduce, but the loss of these impulses has left me feeling less than human. Going back to the psychiatrist saying, “At least you are not dead,” I wish that were not true. Every morning when I wake up, I realize that I am living in a nightmare. This might be obvious, but as a consequence of these side effects and the depression caused by having PSSD, it is difficult to pursue romantic relationships.

One major issue with the experience of developing PSSD was the lack of information available to the consumer of antidepressants. I was not informed of the possibility of these side effects persisting – I did my due diligence in looking up the medications, reading pamphlets on the side effects, and talking to pharmacists and doctors, but it was never mentioned that these side effects could persist; for simplicity’s sake, I was “chemically castrated,” without my consent, and without any sort of warning. Being completely blindsided by the persistent side effects has made this experience that much more devastating. Given how prevalent sex is as a topic in society and in media, there are many triggers that put me in an emotionally depressed state. All of this could have potentially been avoided by being educated by a better-informed medical community that recognized these effects could last after the medication was stopped.

Numerous people are saying that PSSD is incredibly rare, but it is underreported: there are people who are ashamed and embarrassed to bring up these issues with their doctors; there are people who are still on antidepressants who have no idea if they have persistent side effects; there are people who have committed suicide while taking these antidepressants; and lastly, there are people who genuinely believe that their experience is caused by their mental illness, or other physical ailments. Every one of these groups will go unheard. To prevent more people from the distress associated with developing PSSD, to prevent people from making uninformed decisions without the ability to assess risks, PSSD must be recognized as a potential side effect of these drugs. Patients should be met with compassion when trying to address these issues, instead of being dismissed, but this will not happen without recognition. With recognition and validation from their healthcare professionals, patients will speak up about their experience. If more PSSD come forth with their experiences we will have a more accurate count of how prevalent PSSD truly is. If we do not take this seriously with scientific research and study, more people will unwillingly develop PSSD and suffer for the rest of their lives. Patients have a right to make an informed decision when taking these drugs, but it will not be possible without formal recognition of PSSD.

Thank you for taking the time to read my story; I hope that by reaching out to you I have explained why I believe my story is not unique to me, but is shared by many people all over the globe. I believe that Canada should do right by its citizens and recognize the truly debilitating effects these drugs can have. I believe that we can take the first steps by formally recognizing PSSD within the scientific and medical communities of North America and ultimately find an effective treatment."

Sincerely,

 Andrew