Not Into Sex: Women’s Experiences of Treatment-Emergent Sexual Dysfunction

Abstract

Despite recent studies suggesting that treatment-emergent sexual dysfunction (TESD) in women is much more prevalent than previously thought, it is not often discussed between physicians and female patients prior to prescribing psychotropic medication. Missing from the available quantitative research on TESD are stories from the women themselves, their experiences with disclosure or lack thereof, and the impact TESD has had on their sense of self and in their relationships. Concerned that this could have a significant influence on women’s mental, emotional, and sexual health, we conducted a study where we interviewed 10 women who self-identified as experiencing TESD after taking psychotropic medications for their mental health. Semistructured, in-depth interviews were conducted, informed by critical feminist practice, and grounded in feminist standpoint theory. Transcripts were then analyzed using thematic analysis to demonstrate the impact TESD had on the lives of these women. Six themes emerged from the interviews: (1) inadequate disclosure about TESD from physicians, (2) gender-based difference in how TESD is discussed, (3) the experience of physical side effects, (4) emotional responses to side effects, (5) concerns about how the partners of women living with TESD experience it, and (6) the importance of knowledge sharing. We conclude this article with a discussion of how these stories fit within the larger social context.

Treatment-emergent sexual dysfunction (TESD) is a known side effect of psychotropic medications (Bahrick & Harris, 2009; Basson & Gilks, 2018; Olsson, Athlin, Sandin-Bojö, & Larsson, 2013; Pestello & Davis-Berman, 2008) and can affect up to 80% of people who are pharmacologically treated for mental illness(es) (Blalock & Wood, 2015; Montejo et al., 2019). Although definitions of TESD can vary between studies, Baldwin, Palazzo, and Masdrakis (2013) describe TESD as being “both the worsening of pre-existing problems and the development of new sexual difficulties in previously untroubled patients” (p. 2), which serves as the definition for this article. We use this definition of TESD as it reflects that people, including women, who have experienced sexual dysfunction unrelated to psychotropic medications may experience new or exacerbated sexual dysfunction(s) as a result of psychotropic medication–induced TESD. Common sexual difficulties associated with TESD include a lack of desire; difficulty becoming aroused; difficulty or inability to achieve orgasm, which is common in women; and erectile dysfunction (Bahrick & Harris, 2009; Fooladi, Bell, & Davis, 2012).

TESD is of particular concern for women because women are more likely to be diagnosed and treated for mental health concerns as compared to men (Pearson, Janz, & Ali, 2013). Furthermore, findings from one study demonstrate that “women experienced greater intensity of decreased libido, delayed orgasm and anorgasmia as compared to men” (Grover, Shah, Dutt, & Avasthi, 2012, p. 260). Although sexual dysfunction is a known side effect of psychotropic medication, the potential for TESD occurrence is seldomly disclosed by prescribing professionals during the informed consent process (Bahrick & Harris, 2009; Basson & Gilks, 2018; Olsson et al., 2013; Pestello & Davis-Berman, 2008). It is unclear whether lack of disclosure for TESD potential when prescribing psychotropic medications is due to physician interpretations of informed consent standards (Canadian Medical Association, 2015; Canadian Medical Protective Association, 2016; Murray, 2012; Reibl v. Hughes, 1980). However, an article by Pestello and Davis-Berman (2008) reviewed and qualitatively coded online message boards related to psychotropic medications and found that this lack of disclosure of TESD potential at time of prescription led to decreased trust in the prescribing professional’s understanding of antidepressant medication, regardless of the rational for omitting the discussion of sexual side effects with patients.

Currently, there is a gap in qualitative research on the lived experience of TESD and a distinct lack of qualitative data specifically on women’s experiences of TESD. This study sought to fill this qualitative gap in research regarding women’s experiences of TESD by conducting in-depth interviews with 10 people who self-identify as women. By amplifying the experiences of our female participants, we hope to contribute to knowledge generation on psychotropic medication side effects for female patients. We sought to investigate the research questions “What do women know about TESD?” due to the low rates of disclosure of TESD potential at time of prescription and “How does the experience of TESD impact women’s sense-of-self and relationships with others?”

In order to investigate TESD as a feminist phenomenon, this work was grounded in critical feminist theory and feminist standpoint theory (Hesse-Biber, 2013). Operating from an inclusive feminist perspective, our meaning of “man” and “woman” is anyone who identifies as a man, and anyone who identifies as a woman. When relevant, we specify that we are discussing cisgender men and women, with the definition of cisgender being understood as “…relating to, or being a person, whose gender identity corresponds with the sex the person had or was [assigned] as having at birth” (“Definition of Cisgender,” n.d.).

Literature Review

Psychotropic medications are a common treatment for mental illnesses such as major depressive disorder, generalized anxiety disorder, bipolar disorder, and schizophrenia (Harris, Baker, & Gray, 2009). These medications are known to cause both physical and psychological side effects (Pestello & Davis-Berman, 2008), including TESD. Despite emerging literature finding that the incidence rate of TESD due to psychotropic medication use is higher than previously believed (Bahrick & Harris, 2009; Baldwin, Manson, & Nowak, 2015; Basson & Gilks, 2018; Blalock & Wood, 2015; Fooladi et al., 2012; Grover et al., 2012; Pestello & Davis-Berman, 2008; Serretti & Chiesa, 2011), TESD is not often disclosed as a potential side effect by physicians during the informed consent process (Bahrick & Harris, 2009; Basson & Gilks, 2018; Olsson et al., 2013; Pestello & Davis-Berman, 2008) and less often still if the patient is a woman (Montejo, Montejo, & Baldwin, 2018; Pestello & Davis-Berman, 2008).

In the literature, specific statistics on the rates in which men and women receive disclosure of the potential sexual side effects of psychotropic medication from prescribing professionals were difficult to find. However, Montejo, Montejo, and Baldwin (2018) discuss that women are less likely to report discussing sexual side effects with practitioners, and Davis-Berman and Pestello (2005) found that it was more likely for men than for women to experience disclosure of the potential for TESD from their antidepressant medication. This is highly relevant to our research because although we could not find specific statistics, the participants in this study felt that their sexuality was undervalued because they were women and that physicians would have valued their sexuality more highly if they were men, which we will discuss in our Findings section.

It is difficult to accurately assess the scope of psychotropic medication–related TESD as a medical phenomenon due to a wide variation in statistics depending on the source consulted. For example, according to the U.S. Food and Drug Administration’s informational resources for the psychotropic medications, paroxetine, citalopram, and sertraline, rates of sexual side effects were between 0% and 9% and focused largely on male sexual dysfunction (Food and Drug Administration, 1987, 2008, 2009, 2012). Bahrick and Harris (2009) found that pharmaceutical companies report rates of sexual side effects to be 2–16%. However, significant emerging research has found that rates of psychotropic medication–related TESD realistically impact approximately 27–80% (Baldwin et al., 2015; Blalock & Wood, 2015; Montejo et al., 2019). In Canada and the United States, these discrepancies in reported rates of TESD may be one of the causes for low levels of physician disclosure of TESD potential at the time of medication prescription given the informed consent regulations in both countries.

In both the United States and Canada, informed consent regulations are tied to the concept of “reasonability.” Canadian informed consent guidelines are governed by what is known as the “reasonable patient standard” (Canadian Medical Association, 2015; Canadian Medical Protective Association, 2016; Reibl v. Hughes, 1980), which means physicians are required to disclose information which they believe would allow “a reasonable patient” to make an informed decision about treatment. In the United States, specific requirements for informed consent vary by state (Egan, 2008); however, American physicians are also held to what is known as the “reasonable person standard” (Gatter, 2000; Hook v. Rothstein, 1984). The reasonable person standard dictates that American physicians are required to disclose information that a reasonable practitioner would disclose and that a reasonable patient would need to know to make an informed decision (Egan, 2008; Gatter, 2000; Hook v. Rothstein, 1984). Although reasonability is meant to govern the adequate provision of information, the perceptions of what is and is not necessary information for a “reasonable” person allows physicians the discretion to determine what information falls outside of reasonability. Sexual side effects are often seen as being beyond the scope of reasonability and are omitted from disclosure during informed consent (Higgins, Barker, & Begley, 2006; Rutherford, Aizaga, Sneed, & Roose, 2007).

Although for some health-care professionals, sexual side effects are seen to be outside of reasonable information to disclose, as qualitative studies with psychiatric nurses (Higgins et al., 2006) and psychiatry residents (Rutherford et al., 2007) found that they are often reluctant to disclose sexual side effects regardless of reasonability. In these studies, and others, a common reason cited for the reluctance to disclose the potential for TESD is the risk of medication noncompliance (Bahrick & Harris, 2009; Baldwin et al., 2015; Higgins et al., 2006; Rutherford et al., 2007). Higgens et al. (2006), the aforementioned qualitative study with psychiatric nurses, found that when they did receive spontaneous disclosures of TESD from patients, meaning that the disclosure was not prompted by the medical professional, the common response to the patient regarded “the importance of remaining on the medication, a disinclination to hear about the quality-of-life impact of the sexual problems, and a desire to achieve the predetermined outcome of medication compliance” (as cited in Bahrick & Harris, 2009, p. 138). While there are many reasons that medication would be prioritized differently by care providers than by participants, a contributing factor to be considered is the perceptions of people with mental illnesses and sexuality.

People living with mental illnesses, such as schizophrenia or severe forms of major depression and anxiety disorders, are often treated as though they are asexual or unable to participate in healthy sexuality (Basson & Gilks, 2018; Blalock & Wood, 2015; Montejo et al., 2018). The desexualization of people with mental illness(es) is similar to the restrictive social scripts in patriarchal societies, including Canada and the United States, which dictate expectations for women’s sexuality (Masters, Casey, Wells, & Morrison, 2013). In these traditional sexual scripts, “women’s places…are being desired but not desiring sex, having weak sex drives, resisting advances, and being more highly valued if they are less sexually experienced” (Masters et al., 2013, p. 410). However, Masters, Casey, Well, and Morrison (2013) found that not all men and women follow heterosexual sexual social scripts on an individual level, despite their understanding of traditional social scripts. This study found that their participants either conformed to, found exceptions to, or transformed gendered experiences in sexual encounters (Masters et al., 2013). Of the women who transformed gender scripts, they spoke openly of desiring sex, and they did not limit sexual interactions to committed partnerships, meaning that they did not require a relationship to engage in and enjoy sex and sexuality. Given that women themselves, or at least some women, do not follow the sexual scripts outlined by patriarchal societies, the gap in qualitative literature related to women’s experiences of TESD serves to further silence women’s experiences of their sexuality.

The small amount of existing qualitative literature on women’s experiences with TESD from psychotropic medication does provide invaluable insight. Women living with TESD often describe feelings of inadequacy (Darrouzet-Nardi & Hatch, 2014; Pestello & Davis-Berman, 2008), disconnection from sexual-self (Blalock & Wood, 2015), obligation to fulfill the sexual needs of their intimate partner(s’) (Darrouzet-Nardi & Hatch, 2014), and decreased relationship satisfaction overall (Fooladi et al., 2012; Olsson et al., 2013; O’Mullan, Doherty, Coates, & Tilley, 2014). In a qualitative study of women experiencing TESD from selective serotonin reuptake inhibitors (SSRIs), a common coping strategy employed by participants was “accepting what is” (O’Mullan, Doherty, Coates, & Tilley, 2015). To these women, accepting what is meant that they accepted that sexual dysfunction was the cost for the benefit SSRIs provided to their mental health. However, it is important to note that while these women accepted their TESD they remained hopeful that it could be alleviated in the future (O’Mullan et al., 2015).

Method

Author’s Lived Experiences of Psychotropic Medication–Related TESD

This research was, in large part, undertaken due to our own experiences of TESD. We wanted to talk to women who have experienced or are experiencing TESD because we are women who have experienced or are experiencing TESD. We have lived, or are living, in bodies that have been sexually impacted by psychotropic medication(s). We have both navigated the affects these sexual side effects had on our senses of self and our relationships with our partner(s). Learning that we were not alone in our experiences was a motivating factor to begin this work, so other women do not need to feel alone. We want to begin and support conversations around the importance of women’s sexuality and advocate for women experiencing TESD.

As researchers with lived experience, however, it is imperative that we discuss how we differentiated ourselves from the participants and our experiences from participants’ experiences. The reason for differentiation was because we wanted to allow the women who participated in our study to speak for themselves and honor the knowledge they shared with us. One of the fundamentally important considerations was to understand and embrace the uniqueness of each person’s experience of TESD. There are similarities in the experience of TESD; however, it would be inappropriate and inaccurate to project our own experiences on to participants or to assume that their experiences are identical to our own. Furthermore, during the coding process, we were careful to create codes that were from the data set itself, not from our lived experiences. We found that we were able to relate to and empathize with the experiences we coded, yet we ourselves were not the basis for the code. This is motivated by our theoretical framework of feminist standpoint theory and feminist research practice, as we recognize the power and privilege that we hold as researchers and therefore the responsibility to evaluate, challenge, and question our role within the study (Hesse-Biber, 2013).

Study Design

For this study, we recruited participants who self-identified as women and who had experienced TESD from psychotropic medication. Inclusion criteria for participants were that they must self-identify as a woman, self-identify as experiencing or having experienced TESD lasting at least 3 months stemming from psychotropic medication use, be 40 years old or younger, not currently be pregnant or within 1-year postpartum, not be currently chest/breastfeeding, and not identify as asexual. Self-identification from each participant as a woman was in an effort to acknowledge and appreciate that although transgender women’s experiences may be more layered than cisgender women’s experiences, they are no less the experiences of women. Self-identification of TESD symptoms was to acknowledge that many women are neither formally diagnosed nor treated for TESD. Exclusion of women who were above the age of 40, within 1 year postpartum, or currently lactating was to rule out sexual dysfunctions which could be related to hormonal changes during these periods. We purposefully did not define sexual dysfunction, to have participants define their own experience.

Participant recruitment took place primarily on the campus of the University of Calgary, via recruitment posters placed on bulletin boards, in women’s washrooms, and in the women’s locker room. Additional recruitment information was advertised on a “BSW UofC” Facebook group, from which several fellow students shared on their social media. We did not ask any fellow students to share the posters on their social media accounts, and when fellow students sought permission to share the posters, we were explicit that they should not share due to their relationships with us, but if they would like to share the poster due to the content and the research, they were welcome to do so.

Ten in-person interviews were scheduled, and this number was based on time and resources available for the researchers to complete this project within a semester-long practicum. The relatively small number of interviews is in line with sampling standards in qualitative in-depth interviewing, which is intended to emphasize the importance of process and meaningful story opposed to largely generalizable results (Hesse-Biber, 2013). A total of 15 interested participants reached out to schedule an interview, two of whom discontinued contact following an e-mail with additional information about the study was sent to them. We accepted the first 10 women to schedule interviews, as outlined in our ethics application. This provision in the ethics application was included in order to ensure equal inclusion opportunity for all those who wished to participate and to avoid bias in participant inclusion. We limited our sample to 10 women so that we could complete this research project within the temporal confines of our research availability.

We developed a semistructured interview guide that included open-ended questions on the participant’s knowledge of TESD, the experience of disclosing side effects to their physician or their physician explaining side effects prior to medication prescription, and the impact of side effects on their sense of self, within partnerships, and with sexual partners. Interviews ranged from 25 to 75 min and were conducted during October–December 2018. We obtained informed consent from each participant and audio-recorded the interviews in English with permission. During the interviews, we followed Hesse-Biber’s (2013) feminist interviewing guidelines and paid special attention to follow the direction of the conversation to create a more in-depth understanding of the experiences the participant shared in relation to the negative side effects from medication. In an effort to engage in a participatory model and break down the power and authority that comes with the role of the researcher (Hesse-Biber, 2013), we offered the opportunity for the participant to learn about us through either reading the written biography on the interview guide or by asking us any questions they had about our personal involvement in the project or our interest in the topic.

Sample

The participants identified as female (n = 10, 100%) and self-identified as either currently or previously experiencing negative sexual side effects from psychotropic medication (n = 10, 100%). Most participants were students at the University of Calgary at the time of their interview in either undergraduate or graduate programs (n = 9, 90%), with one participant who was recruited through social media and who was not affiliated with University of Calgary. The majority of participants were currently living in Calgary (n = 8, 80%), with two of the participants living in the rural areas surrounding Calgary (n = 2, 20%).

As the most important inclusion criteria was that our participants self-identified as women, we did not ask specific demographic information but let participants share what they believed to be relevant to their experience. In doing so, the amount of demographic information collected is limited, yet no less significant. No participants (n = 0) disclosed that they are transgender women, neither did any participants (n = 0) disclose that they are cisgender women, though all did self-identify as women. All participants (n = 10) identified as being white/of European descent. Participant ages ranged from 20 to 37 years old, with a median age of 25. Eight participants (n = 8) identified as heterosexual or discussed heterosexual passing relationships, one participant (n = 1) self-identified as queer, and one participant (n = 1) did not specify her sexual orientation. One participant (n = 1) stated that they identify as a “disabled person.” Nine participants (n = 9) were in intimate partner relationships at the time of their interviews.

Participant Naming Conventions

Participants in this study were given two options as to how they would like to be named in publications, either by their own first name or by a pseudonym of their choosing. One participant chose the pseudonym “Anonymous” and is referred to as such in this article. Six participants (n = 6) chose to use pseudonyms, whereas four (n = 4) participants chose to use their given name in publication. It is significant to note that the women who chose to use their given name expressed the importance of owning their stories and sharing their personal journeys with other women who live with TESD, social workers who advocate for women, and medical professionals. The choice of some participants to use their own given name was significant because in doing they laid claim to their stories and experiences and rebelled against the silence that is often imparted onto women who desire and speak about sexuality. Owning their stories was, in our view, an act of feminist rebellion due to their rejection of the traditional social scripts surrounding female sexuality (Masters et al., 2013).

Analysis

Interviews were transcribed, with each researcher transcribing the interviews they conducted, which allowed us to familiarize ourselves with the content of the interviews closely. This act began the first phase of thematic analysis as described by Braun and Clarke (2006). Over the course of the study, we wrote written reflections on our thoughts and feelings regarding key points within the interviews, in an effort to situate and differentiate our own positionality in relation to the data set (Hesse-Biber, 2013). After the interviews were transcribed, they were then uploaded to Dedoose (Version 8), a cloud-based qualitative analysis software. The use of Dedoose for coding began in Phase 2 of thematic analysis, to negotiate an initial deductive codebook (Braun & Clarke, 2006) based on the review of the transcripts, scholarly literature, and standpoint feminist theory. As female-identifying researchers who have lived experience with TESD, we had a unique perspective on the codes and themes that we collected from the interviews, which acts as a form of resistance to the overwhelmingly male viewpoint in science and health care (Harding, 2003).

An initial double-blind coding test was conducted on two transcripts to test interrater reliability of the codebook. Complementing this initial deductive codebook, we adopted a feminist nonhierarchical system of discussion, negotiation, and agreement on new inductive codes to be created, eliminated, or merged as needed. By implementing a hybrid approach to coding, we were able to incorporate prior knowledge gleaned from background research and critical feminist theory with the themes that emerged from the transcripts themselves (Fereday & Muir-Cochrane, 2006). This codebook was used to determine themes or patterns within and between the interviews, engaging in the third phase of thematic analysis as described by Braun and Clarke (2006): applying codes and searching for themes.

As a research team, we met to discuss and negotiate each individual code and approached difference in coding by developing more specific definitions of the codes, merging codes, adding new codes, or eliminating codes. Once all 10 transcripts were coded, we met again to review the transcripts and agree on the final coding decisions and, finally, once more to discuss themes generated from the codes, engaging in Phase 4 of Braun and Clarke’s (2006) phases of thematic analysis: reviewing the themes. The six themes that emerged from this analysis included (1) inadequate disclosure about TESD from physicians, (2) the experience of physical side effects, (3) emotional response to side effects, (4) concern about how the partners of women living with TESD are impacted, (5) perceived gender-based difference in disclosure of TESD potential by physicians, and (6) importance of knowledge sharing.

Findings

Inadequate Disclosure About TESD From Physicians

“Disclosure” was a recurring theme in our participant’s experiences. Disclosure, as it emerged during the coding process, was discussed in the context of physician-to-woman disclosure of the possibility for sexual side effects and woman-to-physician disclosure of the experience of sexual side effects.

In our study, the majority (n = 8, 80%) of women stated that they had not been informed by their physician of the potential for sexual side effects when they were prescribed psychotropic medications. In fact, many (n = 6, 60%) participants said that they remained unaware of the potential for sexual side effects until sexual dysfunction emerged. For example, Kelsey shared, “…when I went in to my doctor and was prescribed antianxiety and antidepression medication, I was never told that [there] was a possibility of what I could experience until it had started happening to me.” All 10 of the women felt that physician-to-woman disclosure is important and expressed desire for increased rates of physician-to-woman disclosure at the time medication is prescribed. As Erica summarized, “I just wish health-care providers told…their patients or people that they’re treating, that this is a thing.”

Two women, Shelby and Emily, did experience physician-to-woman disclosure at the time of medication prescription. However, Shelby expressed that she felt the discussion did not adequately outline the symptoms of TESD. She explained that her physician was “…a huge feminist” and that “she’s very holistic, [and] she’s very progressive…”; however, still when discussing potential side effects, including TESD, clear disclosure of the reality of sexual side effects was missed. She shared how her physician approached disclosure:

…“So, there’s not really any side effects, except for like, maybe, for some people, sometimes, it can just take a little bit longer to get turned on. So, you know, just foreplay or whatever, you’re just going to need more of that.” I was like, “oh okay, it sounds like it’s not going to happen to me.” And that was about it. (Shelby, 25)

Similar to physician-to-woman disclosure, woman-to-physician disclosure of sexual side effects being experienced was often absent. Many (n = 5, 50%) women expressed that they had not thought to discuss the sexual side effects with their physician, partly because they did not know TESD was a possibility. Erica explained, “he didn’t mention anything, and I didn’t mention anything either because I didn’t know this existed.”

When the women did engage in woman-to-physician disclosure, the response of the practitioners varied widely. Emily’s conversation with her physician was a positive experience, which she described as:

I said “this is what’s happening and I don’t really know if I’m going to do anything about it and yeah, just to let you know.” And she was grateful to hear that and said “unfortunately, that is pretty common.” (Emily, 23)

Karen’s experience of disclosing TESD symptoms, however, was not as positive

That conversation got shut down quite quickly, he was not comfortable talking about my sex life, and the negative effects of medication so he just wrote me the script and got me out the door. (Karen, 37)

Karen was surprised by her physician’s response and expressed a wish that there had been “…more validation around ‘hey, yeah, I’ve heard that from other clients,’…as opposed to the shock, awe, open-mouth, and change the conversation quickly.”

One potential reason that Karen’s practitioner was that they were uncomfortable discussing sexuality entirely. In their work, Bahrick and Harris (2009) found that prescribing professionals are often uncomfortable discussing the topic of sexuality. Reasons cited for this discomfort ranged from presumption of patient discomfort, to lack of professional training in sexuality issues, to lack of awareness that initiating or participating in conversations of sexuality is the prescribing professional’s responsibility (Bahrick & Harris, 2009, p. 139). This discomfort ultimately acts as a systemic barrier for women experiencing psychotropic medication–related TESD because the professional who prescribed the medication is unwilling or unable to engage in detailed discussions around sexuality. We recommend that educational curricula for medical professionals expand to teach, normalize, and prioritize discussions of sexuality.

Additionally, there is a large body of research exploring the benefits of patient-provider gender concordance in medicine. For example, Roter et al. (2014) discuss that “patient and physician gender concordance appears to strengthen these communication effects” (p. 340) and that “a recent systematic analysis of this literature found that female concordant dyads were characterized by the highest levels of patient-centered communication and facilitative verbal and nonverbal behavior (relative to other combinations)” (p. 340). This is significant because Emily’s positive experience was with a gender concordant practitioner, whereas Karen’s negative interaction was not.

The Experience of Physical Side Effects

We asked the women in our study about their physical experience of TESD stemming from psychotropic medication. The physical side effects that were disclosed coincided with our findings in the literature review and included lack of desire (n = 8, 80%), decreased ability to orgasm or inability to orgasm (n = 8, 80%), changes to their body’s physiological response to arousal (such as decreased vaginal lubrication; n = 6, 60%), decreased satisfaction from sexual experiences (n = 7, 70%), and decreased genital sensation (n = 5, 50%). Participants spoke freely and openly about how these sexual side effects influenced their decision to discontinue their medication (n = 6, 60%), remain on their medication (n = 4, 40%), or their willingness to go back on medication after discontinuing for other reasons (n = 2, 20%). The women who chose to discontinue medication discussed the consequences of discontinuation and identified these consequences as being an important aspect of their experience with mental health treatment.

The majority of the women who participated in this study (n = 8, 80%) explained that they experienced a lack of desire to engage sexually with a partner, or even to masturbate, after they began taking psychotropic medication(s). For Karen, the lack of sexual desire was the most prominent side effect experienced:

For me, the biggest thing would be zero sex drive. To the point where I don’t even think about it, it’s not something that comes up in conversation, like I remember once-upon-a-time having a sex drive, but it’s not something that happens now. (Karen, 37)

Interestingly, our participants feeling distress due to their lack of desire directly contradicts the sexual scripts which dictate that women are disinterested in sex and that sexual desire is a decidedly masculine attribute. This contradiction of sexual scripts is, in fact, one of the reasons why we argue that TESD is a feminist issue. In order to understand the distress experienced by women who live with TESD stemming from psychotropic medication, we must first reject the patriarchal notion that sexuality is unimportant to women and that women are not sexual beings.

For other women in our study (n = 4, 40%), lack of desire turned sex into an obligation they felt to their partner. This was true for Shay, who explained that she felt obligated to have sex regularly with her partner, despite her lack of sexual desire because his desire was unchanged. The sense of obligation found in our study echoes results found by Darrouzet-Nardi and Hatch (2014), in their qualitative inquiry into the lived experience of women living with TESD from psychotropic medication, and could support a generalized response to psychotropic medication for women. However, this would indicate that a larger study is necessary. Unlike the distress felt from decreased desire, feeling that sex is an obligation to one’s partner conforms to gendered social scripts. As such, we wonder if this would be problematized in the medical system the way the women themselves problematize the experience.

A decreased ability to orgasm was cited as a TESD symptom by 80% of the women who participated in this study (n = 8), and they described how long it took to climax or that orgasm was unattainable. Erica, for example, explained “I think a part of me does think it is a big thing, not being able to orgasm…. I just accepted I’m not going to orgasm at all.” Acceptance of sexual dysfunction, in Erica’s case the inability to orgasm, is analogous to the code O’Mullan, Doherty, Coates, and Tilley (2015) found in their qualitative work with women experiencing TESD stemming from psychotropic medications. In their study, this acceptance-based coping was found to positively impact their participant’s experiences with TESD and recommend that this coping strategy be investigated for use in fields such as sex therapy. As we believe related to participants decreased ability to orgasm, 70% (n = 7) of the women who participated in this study felt less satisfied by sexual experiences than they had previously. Kelsey shared:

And the couple of times that I had sex, it was just like—if your mind isn’t into what is going on, it’s just not as good sex, right? I remember thinking “I wish this…could be over.” (Kelsey, 25)

This loss of connection between body and mind was not an uncommon theme in these women’s experiences (n = 3, 30%). Disconnection between mind and body also negatively impacted participant’s emotional responses to TESD symptoms and created concerns for and about their partner(s), which will be discussed in a later theme in this article.

In addition to the loss of body and mind connection, many (n = 5, 50%) of the women who participated in this study described decreased experiences of arousal and physical sensation during sexual encounters, often using analogies to explain their experiences. Their analogies included feeling “a muffled sensation,” “a burning sensation,” or “that it felt as though [their] partner was touching the back of [their] hand.” For Suzie:

I said to my husband that you might as well be rubbing the palm of my hand or rubbing my knee. There was no…it didn’t feel very intimate. It really felt like a loss of intimacy for me. (Suzie, 33)

Unlike participants who accepted their sexual dysfunction as a coping strategy, some of the women discussed their decision to discontinue their medication use (n = 3, 30%) after finding that the medication did not create a proportional benefit for the cost of their sexual functioning. The side effects from discontinuing were described as being difficult, including tingling, “brain zaps,” and headaches. Kelsey shared her experience with medication discontinuation, explaining that it took her “about 3 months” to come off of the medication, because she experienced debilitating side effects if she attempted to discontinue too quickly. The prioritization of sexual functioning over mild to moderate benefits provided by the medication, we believe, is additional proof that that TESD stemming from psychotropic medications is a feminist issue, as these participants were real women who made the decision based on their sexual health and sexual needs.

Emotional Responses to Side Effects

Participants in this study shared a number of emotional responses they had to their experience(s) of psychotropic medication–related TESD, some of which remained even after discontinuing medication. These emotions included feelings of anger (n = 7, 70%), not feeling like their self (n = 8, 80%), feeling as though their body was broken (n = 5, 50%), feeling hope (n = 6, 60%), and feeling relief (n = 2, 20%).

Anger

Many (n = 7, 70%) of the women expressed feeling angry about a variety of experiences related to TESD and psychotropic medications. Kelsey shared her frustration by saying, “how is this an acceptable side effect? Who decided that it’s okay for people with vaginas to not have fun with their vaginas?” Kelsey, as we will discuss further later in this article, felt that her sexuality was not a priority to her care provider because she is a woman, which contributed to her feelings of anger. Three of the women (n = 3, 30%) were also angry that they were experiencing these side effects while trying to prioritize their mental health. Some of the anger the participants felt was related more closely to systemic issues than to their own experiences. Three (n = 3, 30%) women who were angry that there was no physician-to-woman disclosure of potential TESD side effects when their medication was prescribed, as well as with the prescription side effect information sheet provided by the pharmaceutical company or pharmacist, which they felt was inaccurate to the lived experience of TESD (n = 2, 20%).

We believe that it is significant to note that in other two qualitative studies with women who have experienced TESD stemming from psychotropic medication that we explored for our literature review, neither explored anger as a code or an emotion. The reason why we believe this is significant is the openness and freedom with which participants in this study expressed their anger. In patriarchal societies, anger is not viewed as a feminine emotion, and we wonder if the omission is tied to social scripts which dictate that women should not be angry, which would indicate a greater need for feminist advocacy.

Not feeling like self

Eight of the women who participated in this study expressed that since TESD symptoms surfaced from their psychotropic medication use, they no longer felt like themselves. This experience seemed to be tied to the lack of physician-to-woman disclosure because they used internet searches and conversations with trusted others to explore why their sexuality had changed. Other women (n = 3, 30%) did not know of the term treatment-emergent sexual dysfunction or that it could be tied to psychotropic medication use until they read our recruitment poster. Anonymous spoke about the process of associating the feeling of being not herself to her medication:

So that was the first time I heard about it and then shortly after I saw a poster for this study and I thought “I do feel like not myself and I do feel like it’s changed since starting the medication.” (Anonymous, 33)

For Shelby, this experience of not feeling like herself not only impacted her sense of self but was also related to her connection to her partner:

If I couldn’t connect with myself, if I couldn’t let go, if I couldn’t be in this very vulnerable and open, beautiful space with my partner, it just felt like the medication was preventing me from actually being myself. (Shelby, 25)

This theme has most directly answered our inquiry into the impact of TESD stemming from psychotropic medication’s impact in women’s sense of self and relationships with others. It is significant that 80% (n = 8) of the participants in this study no longer felt like themselves, as it serves to demonstrate that their sexuality is inextricably tied to their identity. Again, this is in direct contradiction to patriarchal social scripts which undervalue women’s relationships to their sexuality and silences the importance of women’s sexual experiences (Masters et al., 2013).

Feeling broken

Although on the surface “not feeling like self” and “feeling broken” seem quite similar, there are differences which make this a critical finding. Five of the women who participated in this study felt that their body was broken because they could not feel sexual pleasure, or they were unable to become around as they had before medication. Erica explained this feeling, saying:

I feel like my body is betraying me, because it’s not letting me feel pleasure…. There was a little bit where I was blaming myself, where I was like “I don’t know what’s wrong with me, my body just doesn’t work.” (Erica, 20)

Erica pointed out that, as someone who had been taking psychotropic medication since adolescence, she had not considered that sex was supposed to be anything different. Her expression of self-blame was echoed by the other participants who felt that their body was broken, a total of 50% (n = 5) of the women who participated in this study because they, and their medication, were responsible for the sexual dysfunction.

Feeling hope

For six (n = 6, 60%) of the women who participated in this study, their sense of hope was associated with returning desire and sensation after discontinuing their medication. For Kelsey, a sign that the side effects were diminishing was that she was feeling interested in relationships again and explained “currently, I don’t have any sexual relationships happening right now and I’m feeling dissatisfied with that. Which is a really good sign to me, that I’m interested and wanting those things to happen again.”

All of the women who chose to remain on their medication because of the benefit it created to their mental health (n = 4, 40%) expressed hope that they would not need to remain on their medication in the future, or they would no longer need to choose between their sexuality and their mental health. For Hannah, medication for mental health was likely going to be a lifelong treatment. Due to this, Hannah opted to continue the medication: “I’m going to be on it for the rest of my life, that’s fine. But if I could also have more orgasms? That’d be great!”

Current conventional wisdom on the management of TESD stemming from psychotropic medications is to either change to a different medication or to remain on the same medication and hope for spontaneous resolution of sexual side effects (Montejo et al., 2019). However, spontaneous resolution is not common (Montejo et al., 2019), which means that the individual will still experience the symptoms of TESD while they wait for an indeterminate amount of time. In order for the hope of returned or improved functioning to be fulfilled, medications and treatments for female sexual dysfunctions need to become an increased priority in medical research. As such, we feel that this again supports psychotropic medication–related TESD as a feminist issue.

Feeling relief

Two (n = 2, 20%) participants in this study expressed relief, which in this instance was unfortunately not tied to relief of their TESD symptoms. Rather, the feeling of relief was tied to learning that they were not alone in experiencing TESD as a woman. During interviews, we often shared our knowledge of quantitative and qualitative research found during our literature review process, in an effort to normalize women’s experiences of TESD. Additionally, we asked participants whether they had questions about us, including our lived experiences with TESD as we both identify as women with lived experience of psychotropic medication–related TESD.

The knowledge or experiences we shared with women were met with surprise, and relief that they were not alone in this experience. This sense of relief, we found, was closely tied to feeling social support, which is connected to the theme of knowledge sharing, which will be discussed later in this article. Shay described how isolated she felt as a result of her experience with psychotropic medication–related TESD:

Yeah, it’s kind of nice because I kind of felt like I was a freak…. I haven’t talked to anybody who’s experienced this before, so it’s kind of nice to hear that I’m not the only one going through this, because it sucks. (Shay, 23)

In Kelsey’s case, she believed this relief could have been felt sooner if her physician had disclosed the potential for TESD during the informed consent process, when her medication was prescribed. Kelsey’s sense of relief was connected to the code “not feeling like self” because it stemmed from the knowledge that her sexual dysfunction was likely temporary. We argue that the sense of relief from knowing that someone is not alone in their experience and that their experience is not necessarily permanent is reason enough to include discussion of potential sexual dysfunction as a key feature of informed consent.

Concerns About How the Partners of Women Living With TESD Are Impacted

Given that sexual experiences often include two or more people, it is unsurprising that the emotional experience of TESD was not limited to intrapersonal distress but also to interpersonal distress. This interpersonal distress was coded in our data as manifesting in two forms: sexual concern for partner, in which the women who participated were concerned for the sexual needs of their partner, and romantic concern for their partner, in which they expressed concern for the emotional space and connection between themselves and their partner. All (n = 10, 100%) of the participants in this study expressed romantic concern for their partner, nine (n = 9, 90%) cited that the romantic concern was related to breakdowns in intimacy and connection and caused long-lasting ramifications to their relationship. The lasting implications of TESD from psychotropic medication use related TESD led to the development of the code “long-term relationship implications” as a unique aspect of the concern these women felt for their partner(s).

For Emily, concern about partner meant feeling a sense of ownership over the change in the sexual relationship she had with her partner. She explained, “it feels…pretty awful sometimes. Because it’s kind of like it’s my fault, it’s me. It’s like I’m the one who is stopping us from having that connection, that kind of relationship.” For Zoeü, this meant increasing sensations of anxiety, a response that was supposed to be helped by the medication:

I remember laying in bed…and apologizing because I was like “nobody is doing anything wrong. He isn’t doing anything wrong,” and I was doing all the things I knew how to do to become aroused, and the things that I knew how to experience pleasure, and again, just hitting a wall. And I remember…that being so stressful, and so anxiety-inducing that that would lead to panic or greater anxiety. (Zoeü, 23)

The sense of anxiety that Zoeü expressed is significant, because if her experience of TESD caused anxiety around sexuality to the point at which it caused her significant distress, then we argue this side effect contradicts the intention of the treatment. Moreover, in Higgens et al.’s (2006) study on psychiatric nurses and TESD, the focus on medication compliance is questioned here if the predetermined goal of improved mental health is being jeopardized by the adverse sexual side effects. This then becomes a feminist issue, as it is directly tied to the systemic devaluation of women’s sexuality, and sexual desires.

Shelby also discussed experiences of romantic concern for her partner during her interview. She shared the difficulty explaining to her partner the scope of her mental health treatment and medication use. She said:

Because people that are going on to mental health medication are probably going through a tough time, not just because their mental health is poor but the decision to go on medication is a huge thing, you’re experiencing so much stigma, your self-esteem takes such a big hit…and then you’re trying to explain to your partner that you just can’t get turned on by them anymore, and they don’t get it, because why would they get it? They weren’t in the doctor’s office with you making that decision. (Shelby, 25)

The added pressure to try to have their partner(s) understand that their body was responding to the medication, and that the women themselves were not rejecting their partner(s), was compounded with the experience of living with the diagnosis itself. This compounding concern made the experience of TESD even more challenging to live with.

In addition to the romantic concern, these women felt for their partners, they often felt sexual concern. Sexual concern was closely tied to the inability to become aroused or respond sexually as the way they had prior to medication use, including decreased or absent sexual desire. Erica described feeling as though she was “letting her partner down” because he “focuses so hard on trying to get [her] to climax.” For Suzie, this led to feeling “awkward” with her partner and took away from her ability to enjoy sexual encounters. Although we believe that sexual concern and romantic concern are distinct enough to warrant separate codes, they are inextricable linked. Romantic concern in all cases, as felt by 100% (n = 10) of participants in this study, was a result of sexual concern for their partner. Their concern over not meeting the sexual need of their partner manifested into decreased intimacy and connection, thus leading to romantic concern. We wonder how closely tied these sexual and romantic concerns are tied to patriarchal social scripts, wherein women in intimate partner relationships are meant to fulfill the sexual needs of their male partners, due to men being seen as requiring sex (Masters et al., 2013).

Perceived Gender-Based Difference in Disclosure of TESD Potential by Physicians

As previously discussed in the literature review, women are more likely to report that they were not informed about the potential for TESD symptoms as a result of psychotropic medications as compared to men (Davis-Berman & Pestello, 2005; Montejo et al., 2018; Pestello & Davis-Berman, 2008) and are less likely to report emerging sexual dysfunction to their care providers (Grover et al., 2012). While the women participating in this study may not have known the formal research around the gender-based difference in disclosure and monitoring of TESD, seven (n = 7, 70%) expressed that they felt their sexuality was not a priority to care providers because they are women. Five women (n = 5, 50%), including Kelsey, Karen, and Hannah, believe that part of the gender-based differences are due to the priority of male sexuality in research. Karen explained:

The male libido is something we understand better, or there’s been more research in, so there are other options, I find, that if that is a big enough deal they could do other things. There’s nothing for women. There’s nothing else out there. (Karen, 37)

Hannah expressed frustration at not being provided information about the potential for TESD prior to beginning medication. She explained, “…I was like ‘what? Why is no one giving me this information?’ Yeah, because I’m not allowed to have good sex, right? I keep forgetting. I’m in the patriarchy, ugh.” Hannah also felt that this information may have been provided if she were a man “because men are sexual beings” in the eyes of the medical establishment.

Kelsey asserted the belief that cisgender men’s TESD symptoms receive higher rates of disclosure and monitoring compared to cisgender women. She believed it was due to the association of ability to achieve erection and masculinity as well as the fact that an erection is more easily observable than the physiological responses of a vagina to arousal. She explained:

…because for men it’s focused on erections. Can you get it, and if you can, great, you’re all good. So, here’s some Viagra. And that’s inherent to masculinity is the ability for someone to get an erection, then you’re good. Then you can leave the doctor’s office. But for women, it’s like, we still have a sex drive, our body is still hugely impacted by that in so many similar ways, it’s just on the inside and so it’s not as important. (Kelsey, 25)

Kelsey’s belief is congruent with both the findings of Davis-Berman and Pestello (2005) on the likelihood of men and women receiving disclosure for TESD, and with Masters et al.’s (2013) discussion of traditional sexual scripts, wherein men are viewed as seeking sex more actively than women who are passive receivers of sexual advances. Additionally, though no longer part of the Diagnostic and Statistical Manual of Mental Disorders, hysteria still may have an impact on valuing women’s concerns in health care as being real and needing a sense of immediacy rather than being result of emotions or caused by an unknown source (Devereux, 2014).

Our study privileges the perspectives of female identifying patients, and we want to be clear that we cannot address provider’s motivations for omitting discussion of sexual side effects at time of psychotropic medication prescription. For example, it is possible that they merely “forgot” to discuss potential sexual side effects. What we can speak to is the desire of our participants to receive disclosure of potential sexual side effects, and their feelings that their sexuality was not valued because they are women, which is inherently linked to our belief that this is a feminist concern.

The Importance of Knowledge Sharing

The women who participated in our study reported little knowledge about TESD (n = 10, 100%). However, we postulate that this is logical, given the low levels of physician-to-woman disclosure found in our sample and the literature regarding low levels of sexual side effect discussion during the informed consent process (Bahrick & Harris, 2009; Basson & Gilks, 2018; Olsson et al., 2013; Pestello & Davis-Berman, 2008). Zoeü, for example, explained “I don’t think I knew what was happening with my body when it was happening, I don’t think when I was experiencing symptoms I knew that’s what was going on.”

Zoeü explained that her knowledge has increased in informal ways, saying “I think because I’ve had some friends who experience [TESD], and I’ve experienced it, but I don’t know…much about it from a clinical standpoint or what it means biologically…” The ability to discuss TESD symptoms and experiences with friends was important and beneficial to many of the women, leading “social support/isolation” to be identified as a recurring code in our study. Shelby explained:

I did talk about it a lot, and it did come up frequently with other people that, in sharing that they either were or had been on medication for mental health, they had either decided to stop using the medication, or to change it, or something else because of issues around sexual dysfunction or just feeling generally not into sex at all anymore. (Shelby, 25)

Of the women who did not have conversations about TESD with trusted others, many shared that it was reassuring to learn that they were not alone and that others had experienced TESD as well. Shay said, “obviously, I wouldn’t want other people to go through this, but to know that people…it’s not just me. I’m not just some abnormality. It’s nice.” Emily expressed the same sentiment, saying “it’s just nice to know you’re not alone, right? So that’s just the biggest part.”

Potentially due to the relief of knowing that they are not alone in their experience of TESD, many of the women expressed a desire to raise awareness of TESD as a side effect of psychotropic medications and women’s experiences of TESD. Karen wanted other women to know, “it’s a thing. It’s okay. And there’s really no shame, this is just part of life,” and “if you didn’t know this was a thing, it’s okay to be mad, and to feel unheard, and to feel uninformed because I think that our sex and sexual needs as women are definitely pushed aside a little more.” More broadly, Erica said “…I just want awareness to be spread about this. I didn’t know about it, and my boyfriend didn’t know about it.”

Beyond merely spreading awareness, some women discussed recommendations for knowledge-based action. Emily mentioned several times that she would like to see TESD stemming from psychotropic medication taught in university level psychology classes. Kelsey expressed a desire that “we should all support each other if we’re going through this process” and “band together as women.”

Discussion

TESD is a lived reality for many women who seek support for their mental health and are prescribed psychotropic medication and living with TESD impacts more than just the physical manifestation of sexual side effects. TESD, the emotional responses to TESD, and the impact TESD has had on intimate relationships were cited by participants multiple times as a contributing factor to medication discontinuation. We recognized that the physician-to-woman disclosure, or rather, lack thereof, was pivotal in the emotional experience of TESD. Most of the women in our study did not receive physician-to-woman disclosure, and one of the participants whose physician did speak about TESD found the disclosure to inadequately describe the reality and likelihood of TESD. We argue that initial, adequate physician-to-woman disclosure of the potential TESD side effects could alter the emotional experience of TESD and the treatment trajectory. While this may not ultimately change the woman’s decision to discontinue treatment, it would potentially relieve some of the negative emotional experiences associated with TESD and provide women with the information needed to make a truly informed decision about their treatment.

Not only could initial physician-to-woman disclosure alter women’s emotional experiences of TESD, it could additionally foster a more open and trusting relationship with their care providers. As Shelby discussed in her interview, she felt that her physician did not truly understand the sexual side effects of the medication. Perceptions of physicians misunderstanding, or complete lack of knowledge, about sexual side effects from medication can degrade the relationship between care provider and care receiver. If the woman does not feel that her physician truly understands the side effects of the medication, she may not feel that the physician is able to support her mental health more generally. This hypothesis is congruent with the findings of Pestello and Davis-Berman (2008), as they found that many of the respondents on medical message boards discontinued antidepressant medication treatment because they did not feel that their physicians understood the medication enough to make a well-informed decision on prescription.

When asked what factors the women would need in order to facilitate a disclosure of their experiences with TESD to a physician, they had specific recommendations for health-care providers. The women pointed out a need for the normalization and celebration of female sexuality, as sex and sexual functioning was important to their everyday lives and relationships. They critiqued the lack of time allotted to patient appointments, as the women felt that not only was sexuality not a priority for physicians to discuss but because of the lack of time in the appointment, they also had to prioritize the discussion of their mental health treatment. This often meant that there was not enough time to engage in a nuanced discussion of sexuality, sexual functioning, and emotional impacts of TESD. The women also shared that beyond the nonnegotiable need to disclose TESD prior to prescribing psychotropic medication, the physicians had a responsibility to regularly check-in on side effects in future appointments without being prompted by the woman herself.

Although the critiques and recommendations participants in this study made for ways to facilitate disclosure are entirely valid, and we agree are needed, it is imperative to note that physicians themselves face structural barriers in provision of care. The 2018 Survey of America’s Physicians: Practice Patterns and Perspectives (Meritt Hawkins, an AMN Healthcare Company, 2018) found that only 31% of American physicians identify as having their own practice or as being a partner in a medical practice. This means that most health-care practitioners in the United States are unable to make their own decisions about care provision, including the time that they spend with patients. Eighty percent of American physicians “are at full capacity or over extended” (p. 7), leading to high rates of physician burnout. While we agree and argue strongly that physicians need to be better equipped to support patients, we acknowledge and understand that practitioners face barriers to providing care. Given this, we assert that it is imperative for changes to mental health-care provision take place at a structural level, in addition to at an individual level.

Of the women who decided to discontinue, they cited side effects related to discontinuation, with one woman explaining that she quit “cold turkey” because she “didn’t trust the doctor…any of the doctors anymore.” The decision to wean off the medication or to quit “cold turkey” often is accompanied with difficult physical withdrawal symptoms (Pestello & Davis-Berman, 2008), and the women described feeling “brain zaps,” tingling in their lips, headaches, and generally feeling unwell. By not informing women of the sexual side effects triggered from psychotropic medication, or by downplaying the reality of it, women are experiencing a lack of faith in the medical system’s ability to understand and prioritize women’s sexuality and are living with the consequences. This is significant because the women usually sought help under the impression that the physicians were able to help them, and not only were they not able to be helped by the physician, but they lost faith in the physician and the larger medical systems. The ramifications of this loss of faith potentially extend beyond the treatment of mental health concerns to any medical concerns that the women may have in the future.

If a woman decides to discontinue medication due to TESD, we also question if, or which, supports are offered for mental health by their physician, and if there is any type of monitoring of mental health concerns. Although the woman has decided to discontinue the medication, it does not necessarily mean that the original mental health concern has been alleviated. One woman explained that she sought out medical cannabis as an alternative treatment to help with sleep and anxiety, others explained that they turned to diet, exercise, and a healthy sleep cycle. Given the response in our study of women seeking out their own sources of follow-up treatment, we question protocol in place to ensure that these women do not fall through the cracks of the mental health-care system when deciding that medication treatment is not for them. As literature has suggested, sexual dysfunction can persist for longer than 6 months postmedication discontinuation (Bahrick & Harris, 2009; Fooladi et al., 2012). This means that, potentially, even if the initial mental health concern has improved, the persistence of TESD symptoms can either perpetuate or create further negative mental health experiences that women may be facing without support.

Evident by the romantic and sexual concern for their partner(s), the women also expressed an immense amount of interpersonal distress from the side effects. This disruption in the space between partners resulted in lack of connection, feelings of obligation, awkwardness, and, in some cases, long-term relationship implications. The pressure placed on these women to balance their diagnosis as well as their relationships was significant and ultimately integral to many of the choices to discontinue treatment. Not only are these women being ignored or not prioritized in their mental health treatment but also are making decisions to live with the symptoms of their diagnosis in the attempt to prioritize their sexual selves.

Limitations

Our research involved a small sample size (n = 10) of self-identified women, all of whom identified as being white, and all of whom live in Western Canada. Due to this, the results of this study cannot be assumed to represent larger societies as a whole or to necessarily speak to the experience of self-identified women who fall outside the demographics of our participants in age, race, geographic location, and relationship status. In addition to these factors, the inclusion criteria for our study required participants to self-identify as women, as we acknowledge that being a woman is not defined by a person’s biological sex. No participants (n = 0) explicitly stated that they identify as cisgender or transgender, which means that we do not know if, or how many, women were or were not cisgender. Due to this, we are unable to determine the cis-normativity of this work. Given the nature of this study, we acknowledge that it is likely that our sample is biased toward the importance of sexuality and sexual functioning. Our recruitment posters explicitly stated that this study was related to sex, sexuality, sexual dysfunction, and psychotropic medication use. In doing so, the participants we attracted were likely women who personally feel that sex and sexuality are deeply personal and who are comfortable discussing sexuality openly.

Canada is a country where sexuality is taught in public schools (Mckay, Byers, Voyer, Humphreys, & Markham, 2014; Public Health Agency of Canada, 2019) and where conversations about sex and sexuality are pervasive in the media and in society (Bielski, 2017; Kozicka, 2016; Sacks, 2015; Sparks, 2014). We wonder about how women’s experiences of TESD might differ in countries where discussions of sexuality are more taboo.

Beyond cultural understandings of sexuality, we also wonder how different medical systems, like that of the USA, might shape women’s experiences of TESD. For example, Canada’s universal health-care system allows more people to seek medical care, including for mental health, which is partly responsible for the short appointments participants in this study named as a barrier to care for TESD. We are unable to determine whether permanent and stable access to health care, including mental health care, is a mediating factor in the experience of TESD.

Conclusion

Our study found that women’s experiences with TESD had more consequences than the physical side effects themselves. The women who participated in our study lived with feelings of brokenness, anger, interpersonal distress, and an overwhelming sense of being ignored or discounted in mental health care. Often, these feelings resulted in discontinuation of psychotropic medication use, despite continuing symptoms of their mental health diagnosis. Additionally, many of our participants first learned of TESD through our recruitment posters and began researching how it fits within their experience of psychotropic medication side effects. In order to break the trend of women’s exclusion from knowledge generation on psychotropic medication side effects, it is imperative that health-care professionals take into account the woman’s right to self-determination and the prioritization of her whole body: her physical health, mental health, spiritual health, and sexual health.