Jess’s Story
PSSD Testimonial April 8, 2021
Jess
Canada
PSSD 6 years
PSSD Testimonial April 12, 2021
Dear reader:
I am writing to share my story of persistent sexual dysfunction after taking SSRI medication. The purpose of this testimony is to educate, advocate for informed consent, and to express my determination to find a cure and prevent more unnecessary suffering. If you are reading this testimony, I implore you to read it in its entirety.
Post-SSRI sexual dysfunction (PSSD) is an iatrogenic condition (an illness that is caused by a medication or other medical intervention) that can arise following antidepressant use, in which sufferers experience loss of sexual feeling and function [1,2]. This is a complex, under-researched and debilitating condition that persists for years or indefinitely. PSSD severely affects the suffers ability to have relationships, is devastating to quality of life, and has resulted in suicides.
I was genitally mutilated (chemically) when I was prescribed Zoloft at the age of 11, and then Citalopram a few years later. I was seeking help for anxiety and was given a drug that has left me with something a thousand times worse. The prescribing psychiatrist never discussed the common sexual side effects with me, nor with my guardians. My guardians and I were not offered the opportunity for informed consent because the risks to my developing sexuality were not disclosed. You cannot consent to lose a part of yourself that has not yet developed.
I acknowledge the strong advantages of SSRI medication for many people. I have loved ones who are experience great benefits from these medications. However, I believe that people must be given the opportunity to exercise their right to informed consent. Despite not having taken any SSRI medication in almost 6 years, my symptoms persist:
- Genital anesthesia
- Impaired sexual desire
- Minimal response to sexual stimuli
- Inability to orgasm (anorgasmia)
- No sexual or erotic imagination
- No sexual sensitivity or pleasurability in erogenous zones, for example nipples
SSRI medication is a curse disguised as a blessing for those of us who suffer profoundly after taking these medications. My sexuality, a sacred part of my humanity and the most vital and intimate part of myself to share with a beloved other, has been stolen from me. This injury has had profound negative impacts on my romantic relationships, sense of self, quality of life, and my hopes for maintaining a romantic partnership in the future.
It’s hard not to constantly wonder what my life would be if I had not been offered these medications. Working as a mental health clinician currently, I now fully realize that these medications were never actually necessary for me, and I could have managed my personal experience of anxiety with a combination of CBT, meditation practice, and exercise - none of which were explored as possible options for me.
Learning of this condition and connecting with others via pssdcanada.ca who are suffering with similar symptoms has given me the strength and commitment to bring light to this issue. I was inspired to begin investigating my symptoms after completing a course in evidence-based practice for my Master of Social Work degree. Prior to this, I had refrained from looking into this issue for so long because I was terrified of what I would find. I was scared to find confirmation of what I had suspected in my heart for many years. There is a uniquely devastating and heartbreaking horror that sinks in and presents throughout your body, mind, and spirit when you realize the real truth and the gravity of what has happened to you.
Due to the regrettable lack of scientific inquiry into this issue (only a hand full of articles mentioning PSSD have been published in high impact reputable journals), physicians are generally unaware of this condition. Due to this unfortunate yet understandable lack of awareness on the part of healthcare providers, symptoms are frequently dismissed as psychological in origin, rather than iatrogenic. This contributes to the crushing shame, denial, and silence intrinsic to the experience of PSSD. The experience of dismissal and minimization, after building up the courage over months or even years to finally speak up, is a uniquely distressing anguish that survivors encounter.
Pharmaceutical companies have known about these risks for decades, and regulators had reports of these conditions in the mid-1980s [4]. Neither warned the public or doctors. The hardest pill to swallow is that reports of these side effects were known to medical regulators before I was prescribed SSRI meds, yet the condition has been ignored and so many of us have been left to suffer. After many years of anecdotal reports, a body of literature on PSSD is finally emerging.
No direct link between SSRI medication and these side effects has been proven, yet anecdotal evidence and existing studies [5,6,7,8] point to a need for confirmation regarding the experiences of myself and many others. Existing publications and studies are extremely compelling, as well as existing rodent studies [9,10,11]. The need for more research with regard to pathology and epidemiology of this condition is absolutely essential.
The European Medicines Agency has recognized this disease [12], yet the full extent of the risks of SSRIs is not yet public or common knowledge in the medical community within Canada. Health Canada completed a review of SSRI and SNRI medications (Jan 5, 2021) that, while unable to confirm or rule out a causal link between the antidepressants and ongoing sexual dysfunction, stated that this was because there have not been enough studies designed to examine this and recommended that doctors inform their patients of the possibility of developing these symptoms [13]. However, physicians, patients, and the public are still not being alerted to the possible long-term sexual effects of SSRI medications.
It is my hope that PSSD can be widely recognized within the medical community. Until this recognition occurs, patients will not be met with the compassion they deserve, and will continue to experience the dismissal and the cascading shame associated with the reporting of symptoms. Those of us with PSSD must learn to live with a cloud of torment over our heads for the foreseeable future.
This condition is believed to be highly underreported due to the pervasive shame and discomfort in discussing sexuality and sexual dysfunction. It is my sincere hope that recognition and validation of this condition will allow others to speak out, leading to more accurate understanding of the prevalence of PSSD. If you are currently suffering with this condition, I implore you to fill out the “Consumer Side Effect Reporting Form” describing your adverse reactions report your side effects to Health Canada, so that we can work together to help make these products safer for all Canadians. If you are a physician, you can fill out the “Canada Vigilance Adverse Reaction Reporting Form” [14].
This testimony is the hardest thing I have ever had to write, and those who have come forward with our painful stories deserve to be witnessed and acknowledged. PSSD lies at the intersection of the two most stigmatized areas of healthcare - sexual health and mental health, making it extremely difficult for survivors to speak out. Learning of other people’s experiences and injuries has compelled me to take action and courage of others has emboldened me to advocate for the truth, justice, and healing that everyone in this community deserves. It is my sincere hope that this conversation can begin to happen more broadly in the public sphere.
I am committed in my affirmative vision of finding the cure we deserve. There have been reported cases of folks who have recovered from PSSD, suggesting that this condition is reversible. Finding a cure is only possible if research is done to understand the etiology and epidemiology of this disease.
If you have any capacity to bring light to this issue and support to this community, whether it be through journalism, research, awareness, or advocacy in any capacity - or to influence Health Canada to take action - your contribution would be so immensely appreciated. As is your attention to my testimony.
To other PSSD sufferers who may be reading this - I see you, I hear you, I believe you, and I am grieving with you.
In care and solidarity,
Jess (pseudonym)
Sources
1. Bahrick AS. Post SSRI sexual dysfunction. ASAP Tablet. 2006;7(3):2-3,10-11.
2. Bahrick AS. Persistence of sexual dysfunction side effects after discontinuation of antidepressant medications: Emerging evidence. The Open Psychology Journal. 2008;1:42-50.
3. Thibaut, F., Cosyns, P., Fedoroff, J. P., Briken, P., Goethals, K., Bradford, J. M. W., WFSBP Task Force on Paraphilias, & The WFSBP Task Force on Paraphilias. (2020). The world federation of societies of biological psychiatry (WFSBP) 2020 guidelines for the pharmacological treatment of paraphilic disorders. The World Journal of Biological Psychiatry, 21(6), 412-490. https:// doi.org/10.1080/15622975.2020.1744723
4. Healy D. Antidepressants and sexual dysfunction: a history. J R Soc Med. 2020;113(4):133–135. PMID 31972096.
5. Reisman Y. Post-SSRI sexual dysfunction. BMJ. 2020;368:m754. PMID 32107204.
6. Healy D, Le Noury J, Mangin D. Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases. Int J Risk Saf Med. 2018;29(3-4):125-134. PMID 29733030.
7. Ben-Sheetrit J, Aizenberg D, Csoka AB, Weizman A, Hermesh H. Post-SSRI Sexual Dysfunction: Clinical Characterization and Preliminary Assessment of Contributory Factors and Dose-Response Relationship. J Clin Psychopharmacol. 2015;35(3):273-
8. PMID 25815755. 8. Lorenz TK. Antidepressant Use During Development May Impair Women's Sexual Desire in Adulthood. Journal of sexual medicine. 2020;17:470-476.
9. Maciag D, Simpson KL, Coppinger D, Lu Y, Wang Y, Lin RC, et al. Neonatal Antidepressant Exposure has Lasting Effects on Behavior and Serotonin Circuitry. Neuropsychopharmacology. 2006;31(1):47-57. PMID 16012532.
10. de Jong TR, Snaphaan LJ, Pattij T, Veening JG, Waldinger MD, Cools AR, et al. Effects of chronic treatment with fluvoxamine and paroxetine during adolescence on serotonin-related behavior in adult male rats. Eur Neuropsychopharmacol 2006;16(1):39-48. PMID 16107310.
11. Iñiguez SD, Warren BL, Bolaños-Guzmán CA. Short- and long-term functional consequences of fluoxetine exposure during adolescence in male rats. Biol Psychiatry. 2010 Jun 1;67(11):1057-66. PMID 20172503.
12. European Medicines Agency. PRAC recommendations on signals adopted at the 13-16 May 2019 PRAC meeting. Published June 11, 2019. Page 5.
13. https://hpr-rps.hres.ca/reg-content/summary-safety-review-detail.php? lang=en&linkID=SSR00254
14. https://www.canada.ca/en/health-canada/services/drugs-health-products/ medeffect-canada/adverse-reaction-reporting.html