The double-edged sword of PCOS and gender: exploring gender-diverse experiences of polycystic ovary syndrome

Abstract

Background: Past research on polycystic ovary syndrome (PCOS), a chronic endocrine condition, has focused on the experiences of cisgender women. Aims: The purpose of the present study was to address the knowledge gap about gender-diverse individuals by exploring their lived experiences with PCOS and to better understand if and how their gender identity affected their experience of PCOS. Methods: To explore this, we recruited nine non-binary people and one transgender man with a PCOS diagnosis for qualitative interviews. Results: Three overarching themes emerged: PCOS as a burden, PCOS as an occasion, and PCOS as a benefit. While some aspects of PCOS created an additional burden for our participants, other symptoms such as excess body and facial hair could be empowering and affirming, revealing a positive aspect of this chronic condition. Conclusion: This study is the first to describe the lived experiences of gender-diverse individuals with PCOS, uncovering burdens as well as some benefits. Future research in this population may reveal not only the particulars of what PCOS is like for them but also more generalizable insights into the highly gendered perception and treatment of PCOS.

Introduction

Polycystic ovary syndrome (PCOS) is a chronic endocrine condition affecting an estimated 6-20% of people assigned female at birth (AFAB; Lujan et al., 2008). The Rotterdam Diagnostic Criteria, most commonly used for the diagnosis of PCOS, require two of the following symptoms present for a PCOS diagnosis: oligomenorrhea (intervals of more than 35 days between menses) or amenorrhea (no menstruation); clinical or biochemical signs of hyperandrogenaemia; and polycystic ovaries (ovarian follicles that did not rupture; Rotterdam, 2004). While not a part of the diagnostic criteria, PCOS patients have reported bodily pain and discomfort, menstrual cramping, heavy bleeding, and bloating (Coffey et al., 2006; Elsenbruch et al., 2003; Martin et al., 2017), as well as obesity and longitudinal weight gain at significantly higher frequencies than in the general population (Lim et al., 2012; Teede et al., 2013). Having a diagnosis of PCOS is also associated with increased risk of psychological distress, type II diabetes, cardiovascular problems, metabolic syndrome, and endometrial cancer, suggesting that there may be long-term health complications beyond the presenting symptoms (Cooney & Dokras, 2018; Gilbert et al., 2018).

Many health concerns related to PCOS can alter an individual’s physical appearance—particularly through body and facial hair growth, acne, and weight gain—and much qualitative research has focused on these aspects in cisgender (cis) women as well as how these alterations to their physical appearance affect their perceptions of their bodies. In qualitative studies, when asked how they navigate these bodily differences, many cis women expressed that facial hair growth, oligo- or amenorrhea, and subfertility made them feel less feminine than other women (Kitzinger & Willmott, 2002; Pfister & Romer, 2017; Williams et al., 2015, 2016). Women used the word “freakish” to describe themselves, implying a perceived outsider status conferred by a condition that leads to a body that strays from the rigid bounds of normative femininity (Kitzinger & Willmott, 2002). These studies suggest that cis women might feel that certain PCOS characteristics threaten their femininity.

More gender-inclusive research could reveal whether these same PCOS-related concerns are experienced differently by gender-diverse individuals. A qualitative study on PCOS experiences included six non-binary people who reported similar concerns as cis women, particularly loss of self-worth and bodily autonomy. However, there was no explicit focus on what might be unique about the experiences of non-binary individuals living with this condition (Thorpe et al., 2019). One case study briefly described two adolescent trans men with PCOS not interested in traditional PCOS treatments (e.g., birth control, androgen suppression therapy); however, this study lacked descriptions of the patients’ experiences with their condition (Guss & Pitts, 2018). Lastly, an ethnographic content analysis of menstruation discourse noted the experience of one non-binary participant with PCOS who felt that menstruation and the accompanying physical pain prevented them from being “trans enough,” but did not elaborate on the intersections of their gender identity and PCOS (Frank, 2020). Thus, the scarcity of research in this area suggests there is more to learn and understand about gender-diverse experiences of PCOS and provides a strong rationale for exploring these perspectives.

We thus wanted to understand gender-diverse peoples’ experiences of PCOS and how this condition might intersect with their gender identities. We were particularly interested in how “masculinizing” aspects of PCOS, such as body and facial hair and oligo- or amenorrhea, as well as the medical community’s focus on normative femininity in PCOS discourse and treatment might be viewed. To our knowledge, the present study is the first to use qualitative methods to specifically investigate the lived experiences of gender-diverse individuals with PCOS, providing the opportunity to probe previously unexplored areas of their experiences. In doing so, we hope to contribute to a better understanding of the unique perspectives and needs of the gender-diverse PCOS community as well as gain more generalizable insights into the highly gendered perception and treatment of PCOS.

Materials and methods

Methodology

We used semi-structured interviews because they provide rich data and allow participants to express themselves in terms that are meaningful to them (Brinkmann, 2018). Taking a qualitative descriptive approach, we sought to gain a comprehensive summary of an experience in accessible terms, striving to create an accurate description of a phenomenon (Sandelowski, 2000). This methodological framework may also have “hues, tones, and textures” of other qualitative approaches (Sandelowski, 2000, p. 337). This study is influenced by interpretive phenomenology, which is the study of lived experiences (Wojnar & Swanson, 2007). The term lived experience describes an experience as it is lived through by an individual, wherein the focus is on the meanings the individual ascribes to their own experiences (Van Manen, 2016). Interpretive phenomenology rests upon the claim that reality is fluid and contextual, and thus is a method consistent with our study objectives as it acknowledges that an individual’s perspective occurs within their physical, social, cultural, and historical context (Armour et al., 2009; Wojnar & Swanson, 2007). We use phenomenology to capture the ways individuals perceive the world through their bodies and to explore each participant’s perception of PCOS, their gender identity, and the multiplicities of the relationship that exists between them.

Recruitment

We recruited participants online using purposive sampling which involved seeking out groups, settings, or individuals where the phenomenon under study was likely to occur (Denzin & Lincoln, 2018). This consisted of advertising the study on online forums where people with PCOS or transgender and queer people were active members. After obtaining approval from forum administrators, we posted recruitment advertisements to Reddit and Facebook community pages. We aimed to interview 10-15 participants as we wanted a cohort that was large enough to explore multiple perspectives, but small enough for in-depth case analysis (Sandelowski, 1995).

The inclusion criteria were: older than 18 years of age, current or prior diagnosis of PCOS, and identification with one or more of the following genders: transgender, non-binary, gender non-conforming, agender, genderfluid, or genderqueer. The term transgender is often used as an umbrella term to describe individuals who want to socially and/or physically transition to another sex or gender, as well as people who do express gender non-conformity but do not want to transition (Schneider et al., 2009). Here, we will use the term gender-diverse to describe our cohort as it refers to individuals whose gender identity differs from cultural norms for their particular sex, and therefore encapsulates binary and non-binary gender identities (American Psychological Association, 2015b). In order to abandon a binary understanding of gender that assumes all trans people seek physical transition, gender affirming medical interventions were neither an inclusion nor exclusion criteria of our study (Koehler et al., 2018; Nieder et al., 2020; Vincent, 2019). It is also important to note that not all people who fit the description of transgender self-identify with the term. Participants were included based on self-reported medical diagnosis of PCOS and self-identification with at least one of the included gender identities.

Data collection

Semi-structured interviews were conducted by KW. Each interview was approximately one hour in duration at a participant-selected date and time. Informed consent was obtained from all individual participants included in the study. All interviews were conducted on Zoom, a videotelephony software, between January and July 2021. Prior to the interview, participants chose a pseudonym to ensure their anonymity and filled out a questionnaire which enabled us to capture their gender identity in their own terms and use responses from the questionnaire to guide the interview. Each interview began with the following question: Given that you identify as [gender identity], how would you describe your experience living with PCOS so far? Following the opening question, KW engaged with the topics raised by participants. When necessary, KW referred to the interview guide she developed with prompts such as: Can you describe the process of receiving your PCOS diagnosis? How would you describe the ways your PCOS symptoms affect your life? And what has been your experience discussing PCOS with medical professionals? Video and audio recording of the interviews were taken, with the participant’s consent. One participant chose to have their camera off throughout the interview. Interviewees received an honorarium of $20.00 CAD.

The interviews were all conducted by KW, a cisgender woman who does not have PCOS. The principal researcher’s positionality was frequently discussed in the design, data collection, and analysis processes to reflect upon the power relations within the research. We recognize that the personal characteristics of the interviewer may have affected the interviews because the interview depends upon situational exchanges between the interviewer and interviewee (Brinkmann, 2018). With respect to researcher reflexivity, we were aware of reports that trans individuals face barriers to access and endure discrimination within the health care system (Cicero et al., 2019) and feel excluded from gynecological and reproductive health spheres (Sbragia & Vottero, 2020; Wingo et al., 2018). Thus, we were prepared to learn that participants might share distressing experiences about seeking care for PCOS and that they might express a sense of rejection from PCOS-related spaces.

Analysis

The digitally recorded interviews were transcribed by KW or a research assistant within one week of each interview or prior to the following interview, whichever came first. Information that could have led to personal identification was omitted. To ensure transcription accuracy, KW simultaneously read each transcript and listened to the recording to detect any errors. Transcripts were reviewed by all authors throughout data collection to refine interview questions periodically and assess themes as they emerged. This iterative process is common in qualitative research to develop a clear understanding of the phenomena under study and to continually refine the focus as data collection progresses (Srivastava & Hopwood, 2009). Data collection was terminated when researchers agreed that data saturation had been reached, such that new data repeated themes from previous interviews and did not provide new insights to data analysis (Saunders et al., 2018).

After all interviews were conducted, KW identified emerging themes using a selective/highlighting approach common in hermeneutic phenomenology (Van Manen, 2016). This approach requires the researcher to read the transcript several times while considering the following question: “What statement(s) or phrase(s) seem particularly essential or revealing about the phenomenon or experience being described?” (Van Manen, 2016, p. 93). The statements or phrases were highlighted in each transcript and were used to identify themes that were common across interviews. Themes were discussed with all contributing authors until consensus was reached on three emerging themes and seven subthemes.

Results

Participant demographics

Ten participants were interviewed. Seven participants identified with the term transgender as an umbrella term which defines individuals whose gender is not the same as the sex they were assigned at birth. Of the seven transgender-identifying participants, one participant was a trans man and six were non-binary. The remaining three participants were non-binary and did not identify as transgender. Most participants identified with at least two gender identities (Table 1). The average age at the time of the interview was 28.7 years, with participants ranging from 21 to 42 years old. Participants were diagnosed with PCOS between 12 and 36 years of age, with a mean age at diagnosis of 23 years. They reported a variety of treatments for PCOS, and nine participants reported at least one comorbid health condition (Table 2). Two participants had undergone gender-affirming medical intervention; one had undergone chest reconstructive surgery in August 2020, and another had been taking testosterone since November 2019. Interviews ranged from 32 to 100 minutes.

Table 1.

Participant demographics.

Pseudonym	Age	Gender and/or Sex	Pronouns	Country of Residence	Ethno-racial Background
Ri Dan	42	non-binary, intersexa, genderfluidb, genderqueerb	she/her, they/them	USA USA	White
Corbin	28	non-binary, intersexa, genderqueerb, transgender	they/them	USA	White, Ashkenazi Jewish
Beat	23	non-binary, agenderb, genderqueerb, transgender	they/them	USA	Southeast Asian
CL	36	non-binary, transgender	they/them	USA	White
Wallace	28	non-binary womxnc, feel like a woman sometimes, genderqueerb, genderfaeb	they/them, she/her	USA	White
Jude	21	non-binary, demigirlb, transgender	they/them, she/her	UK	White
Noah	22	man, trans man, transgender	he/him	UK	Middle Eastern
Darcy	23	genderfluidb, woman, non-binary, feel like a woman sometimes, feel like a man sometimes, transgender	they/them, she/her	USA	White
Nicholas	29	non-binary, feel like a woman sometimes	they/them, she/her	USA	White
TB	35	non-binary, feel like a man sometimes, genderfluidb, genderqueerb, transgender	they/them	USA	Black

^a Two participants self-identified with the term intersex which describes sex characteristics which do not fit typical notions of male or female bodies (United Nations for LGBT Equality, n.d.). Intersex is not a gender identity, but a term to describe one’s physical or biological sex characteristics. Neither participant had received a medical diagnosis of an intersex condition.

^bAgender: a gender identity which is neither man/male nor woman/female, or the feeling of having no gender (American Psychological Association, 2015a; University of Rhode Island, n.d.); Demigirl: gender identity term for AFAB people who may somewhat identify, but do not fully identify, with being a woman (University of Rhode Island, n.d.); Genderfae: a gender identity which is fluid between multiple genders, but never male/masculine/man (LGBTQIA + Wiki, n.d.); Genderfluid: a gender identity which is not fixed, and may be conceptualized as moving between genders (APA, 2015a); Genderqueer: a gender identity which is not “male” nor “female,” and is an experience and expression of a “non-male” and “non-female” identity (Thorne et al., 2019). Genderqueer has also been described as a rebellion against the binary gender system (Thorne et al., 2019).

^cParticipant prefers the term womxn, utilizing the X to “denote queerness” (Wallace).

Table 2.

Participants’ PCOS characteristics.

Pseudonym	Year of Diagnosis	Age of Diagnosis	PCOS Symptoms and Health Concerns Identified as Related to PCOSa	PCOS Medications	Comorbid Health Conditionsb
Ri Dan	2015	36	Irregular or lack of menstruation, excessive bleeding, acne, low mood/anxiety/depression, excess body hair, excess facial hair, weight gain, insulin resistance, hypothyroid, thyroid nodules	Hormonal contraceptive pills, Metformin, thyroid medication, statins, anti-depressant and anti-anxiety medication, supplements (unspecified)	Type II Diabetes
Corbin	2014	21	Irregular or lack of menstruation, ovarian cysts, acne, low mood/anxiety/depression, excess body hair, excess facial hair, dry eye, seborrheic dermatitis	Supplements (Vitamin D)	GERD, OSFED, MDD, GAD, BPD, OCD, pilonidal cysts, anemia
Beat	2010	12	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, acne, low mood/anxiety/depression, weight gain, painful ovulation or menstruation	Hormonal contraceptive pills, supplements (magnesium)	Temporomandibular joint disorders, sleep apnea
CL	2018	33	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, low mood/anxiety/depression, hair thinning/loss, weight gain, pain during ovulation, bloating, inflammation, extreme fatigue, brain fog	Supplements (Vitamin D, iron, Vitamin B complex, Vitamin C)	Hashimoto’s Thyroiditis
Wallace	2010	17	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, acne, low mood/anxiety/depression, weight gain, subfertility	Hormonal contraceptive pills, Metformin, anti-depressant and anti-anxiety medications	Depression, anxiety, labial fusion, acne, insomnia, vaginismus
Jude	2021	21	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, low mood/anxiety/depression, excess body hair, excess facial hair, weight gain
Noah	2018	19	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, acne, low mood/anxiety/depression, hair thinning/loss, excess body hair, excess facial hair, pain during menstruation	Anti-depressant and anti-anxiety medication	MDD, GAD
Darcy	2017	19	Irregular or lack of menstruation, excessive bleeding during menstruation, ovarian cysts, acne, low mood/anxiety/depression, excess body hair, weight gain	Hormonal contraceptive pills, contraceptive implant, topical acne medication, oral acne medication	Environmental and food allergies, obesity, urge incontinence of urine
Nicholas	2015	23	Irregular or lack of menstruation, excessive bleeding during menstruation, ovarian cysts, acne, low mood/anxiety/depression, hair thinning/loss, weight gain, insulin resistance	Hormonal contraceptive pills, oral acne medication, anti-depressant and anti-anxiety medication, supplements (barbarine, inositol, fish oil, magnesium, zinc)	Severe anxiety, PTSD, ADHD-inattentive type, EDNOS, IBS
TB	2015	29	Irregular or lack of menstruation, excessive bleeding, ovarian cysts, acne, low mood/anxiety/depression, hair thinning/loss, excess body hair, excess facial hair, weight gain, low libido	Anti-anxiety medication	Fibroids, depression, anxiety

Key: GERD, Gastroesophageal Reflux Disease; OSFED, Other Specified Feeding and Eating Disorders; MDD, Major Depressive Disorder, GAD, Generalized Anxiety Disorder; BPD, Borderline Personality Disorder; OCD, Obsessive Compulsive Disorder; TMJ, Temporomandibular Joint; PTSD, Post-Traumatic Stress Disorder; ADHD, Attentive Deficit Hyperactive Disorder; EDNOS, Eating Disorder Not Otherwise Specified; IBS, Irritable Bowel Syndrome.

^aThe Rotterdam Diagnostic Criteria contains the following symptoms: presence of cysts on the ovaries, clinical or biochemical signs of hyperandrogenaemia, and oligo- or amenorrhea (Rotterdam, 2004). Participants were also instructed to select from a list of health concerns that have previously been reported in PCOS patients and to list any other related concerns they have.

^bAll comorbid health conditions are listed using the terms provided by each participant.

Themes

Participants were eager to share their stories about living with PCOS, providing vivid descriptions of their experiences. They discussed the ways in which their sociocultural surroundings, healthcare experiences, comorbid health conditions, and gender identities shaped their journeys as trans and/or non-binary folks living with PCOS. The following three themes, which overlap and inform one another, emerged from the transcripts, and speak to the intersections of PCOS and gender identity: PCOS as a Gendered Burden, PCOS as an Occasion, and PCOS as a Benefit.

PCOS as a gendered burden

Participants tended to discuss their journey living with PCOS as trans and non-binary people using terms such as “struggle”, “battle”, “frustrating”, “confusing” and “distressing”. These terms convey the burden that PCOS had on participants’ lives as they navigated the world in a non-normative body. In sharing their stories, participants described the ways that their social and medical experiences were complicated by their gender identities.

Discomfort with gendered health concerns

Participants talked about experiencing acne, mood disorders, weight gain, and excessive bleeding or pain during menstruation which they attributed to their PCOS. For many participants, the discomfort of PCOS-related health concerns was exacerbated because of their gender identity. Regarding excessive bleeding during their early adolescence, Ri Dan said:

Like feeling not quite female, being really young, and also bleeding like all the time until I went on birth control pills at a young age. I had this period that never stopped and so that was like a huge gender dysphoria thing.

This conveys the unique intersections of having PCOS and being gender-diverse, wherein a process that may be exacerbated by PCOS– excessive bleeding during menstruation—clashes with their gender identity, emphasizing feelings around both and causing feelings of discomfort in daily life. Similarly, Noah described painful menstruation as:

…. possibly one of the most dysphoria-inducing aspects of my life … awfully anxiety-inducing.

While not a core symptom of PCOS, painful menstruation is reported by people with PCOS (Martin et al., 2017) and Noah specifically identified it as related to PCOS. Not only did PCOS serve as a painful physical reminder of reproductive organs with which he did not identify, but it also complicated Noah’s social experiences as a man when managing intense menstruation. He said:

I was just so worried about making suspicious noises in the men’s bathroom and just taking up too much time in the stall and stuff like that. It was just very uncomfortable.

Many participants explained that weight gain associated with PCOS had an influence on and was influenced by their gender identity and its expression. Ri Dan shared that excess weight around their waist had led people to ask if they were pregnant which they described as “mortifying” because pregnancy was not congruent with their gender identity or personal desires. They also explained that they are unable to wear the clothes they liked because they do not want to accentuate their large waist. They said:

I think if I had like a small, thin, more proportional, equal proportion body… that I would definitely be exploring like more of a queer outward presentation.

Thus, they felt that concerns around weight gain hindered their ability to experiment with their gender expression.

Exercise with the goal of weight loss is a recommended management strategy for people with PCOS (Teede et al., 2018), as an estimated 54-68% of individuals with PCOS are considered overweight or obese (Lim et al., 2012). However, intense physical activity may not be ideal for individuals who are uncomfortable with certain body parts because of their gender identity. For example, Darcy’s discomfort with their breasts impedes their ability to do rigorous physical activity despite their doctors’ suggestion. They said:

… I can’t lose weight if every workout I do reminds me I have a chest. Every kind of movement that is active… they bounce. And it’s just like I don’t want to be reminded of that. It’s uncomfortable and it just makes me feel bad about myself.

Overall, participants discussed how health concerns related to PCOS exaggerated features of their bodies that are typically gendered “female” and thus created emotional discomfort in addition to the physical pain or social consequences of this condition. These reflections about how PCOS “treatment” collides with gender identity are uniquely voiced by this population and highlight how the common PCOS treatments affect individuals who do not identify as women.

“PCOS is failure”

Participants tended to discuss feelings of shame and failure associated with PCOS. These feelings were often due to participants straying from the medical and social expectations of a “female body.” When discussing their perspectives on PCOS, several participants used terms such as “failure” and “broken” to describe how they were made to feel about their condition. Recalling how PCOS had been conceptualized to them, Beat said:

My experience of PCOS – especially before I became an adult and moved out – was PCOS is failure. That was how it was framed to me – as failure of being cis enough or failure to be thin enough. And also, that it was kind of my fault even though it wasn’t. And it was this bad thing that had to be cured.

TB shared that the information they received during their PCOS diagnosis was through a “cisheteronormative lens” which they described as prioritizing fertility preservation and restoration of the menstrual cycle. When asked how the diagnosis made them feel, they said:

I just thought I failed. I just thought I was performing my gender badly as a woman. Yea, I just felt horrible at the time.

Beat and TB’s reflections indicate the shame they experienced as they were made to feel responsible for their condition and the conjunction of both PCOS and their gender identities making them unable to approximate ideal cis femininity.

Several participants felt that hormonal contraceptives, a common treatment for PCOS, reinforced the idea that they differed from normative womanhood. CL questioned why it is considered unacceptable to have high testosterone levels as an AFAB person and expressed a desire for medical professionals to approach PCOS from a perspective of acceptance. They said:

… and instead of approaching it from that perspective, it’s almost feels like I’m a broken woman to them.

CL’s reflection echoes the sentiments shared by Beat and TB; that having PCOS was their fault, they were a broken person, and this was their responsibility to overcome.

Many participants in our study explained that not only did they feel ashamed that their bodies differed from the typical AFAB body by medical definitions, but they also felt ashamed that they were unable to achieve cultural beauty standards. Jude recalled feeling like they were “not like other girls” growing up and that one of the reasons they identify as demi-girl is because of “a wanting” to resemble women they perceive as feminine. They said:

Like, I’ll see other girls and be like, “I wish I looked like them.”

For Nicholas, their lack of comfort in their body because of their gender identity was compounded by the feeling that their body was “ugly” because of PCOS. With intermittent laughter, they said:

I already don’t feel comfortable in my body and then I feel like it’s an ugly body. Woo! So, there’s that!

Being noticeably different from normative standards had lasting effects on participants, with many of them reflecting deeply upon their physical appearance, particularly regarding their weight, hair, and skin. The stories shared by the participants demonstrate that PCOS made them appear and feel different from both medical and cultural norms and they were often ashamed of those differences.

“The script”

Participants talked extensively about their experiences in the medical system when being diagnosed with and treated for PCOS. They felt dismissed, ignored, and neglected. Participants noted that the treatment plan they received for PCOS was guided by gendered norms and expectations, with a heavy focus on hormonal contraceptives, fertility, pregnancy, and weight loss. Two participants referred to the information they received from their healthcare providers as “the script” (CL, TB), indicating a generic treatment that is neither personalized nor holistic. Beat listed the treatment options they had been given:

…. they tell you, you should lose weight; they tell you, you should exercise more; they tell you don’t eat carbs; they tell you to take birth control pills and everything will be magical and fine and you never have to suffer ever again.

Participants felt that PCOS care offered by medical professionals was very limited and they were rarely provided with useful information on managing PCOS in their daily lives. Reflecting on their PCOS diagnosis and their doctor’s attitude throughout the process, Corbin said:

… having a diagnosis was helpful but not knowing what to do about it was frustrating. And the attitude of that doctor like, “Oh don’t get diabetes. Come back if you want to get pregnant” felt very dismissive.

Many participants had similar experiences to Corbin’s which left them feeling that their particular concerns were ignored; the care session ended with them feeling uninformed about the potential impacts of PCOS on their lives.

Participants also noted that health concerns they felt were related to PCOS, but did not include fertility or weight gain, such as sexual desire, insulin resistance, and mood dysregulation, tended to be dismissed. TB said having PCOS diminished their sexual desire and reflected on discussing this concern with their gynecologist:

… there was just no focus on like pleasure. Like how certain treatments, like how are my hormone levels affecting my pleasure and sexuality? Like when I would bring that up, it would just kind of be like, “Yea it’s just too high or it’s too low,” and there was just no addressing that.

Overall, participants felt that they did not receive appropriate and actionable PCOS care and instead were treated according to cisgender and heteronormative assumptions that AFAB bodies must be slim and fertile.

“I am not a C-Y-S-T-E-R.”

While participants said they sought support and desired a sense of community, due to their gender identity, they did not feel comfortable or welcome in online or clinical spaces occupied by fellow PCOS patients.

Online spaces

Upon being asked how they felt when browsing online PCOS support communities, Nicholas said:

Of course, alienated. Because of gender. Just not feeling like I’m a part of this community, like I have this diagnosis but I’m not part of like this culture, or yea like this community.

Participants noted that the topics typically addressed in PCOS community spaces such as fertility and womanhood are not aspects of PCOS which concern them. Corbin specified why they do not relate to PCOS community members, stating:

… I’m not interested in trying to get pregnant, I’m not interested in trying to “reclaim my womanhood”, I am not a C-Y-S-T-E-R cyster (laughs).

There were also concerns that discussing trans-related topics in PCOS forums could lead to harassment from other community members. CL said:

If you were to self-identify [as trans] they might, I don’t know, come at you with a pitchfork.

Along with similar remarks from other participants, CL’s comment suggests that gender-diverse people with PCOS do not view the broader PCOS community as a safe space in which to discuss their condition and their feelings about it.

Clinical spaces

The healthcare environment raised similar feelings of exclusion. Reflecting on a recent gynecology appointment, Beat said:

I was the only person who looked kind of masculine in the entire waiting room, so it was kind of a bit awkward. I got the feeling like they were expecting me to be waiting for someone else, or like be accompanied by someone else so I felt like I didn’t really belong there.

Once in the doctor’s office, the doctor’s own assumptions and expectations about AFAB bodies exacerbated this feeling of exclusion. Participants were frustrated by being given PCOS management strategies designed for cis women because it underscored how PCOS led health care professionals to assume they were cis women. TB explained:

…. So much around diagnosing PCOS is around like preserving a woman, preserving someone’s womanhood. I’ve heard that. I’ve read that. You know? Preserving someone’s internal sense of femininity. And I think that’s important, it’s just very presumptuous. It erases a lot of people, you know? Transmasculine people.

Thus, while participants differed in their specific gender identities and the range of PCOS symptoms they experience, they felt unwelcome, uncomfortable, and generally excluded from PCOS discourse because of the focus on cis women and cis women’s presumed concerns.

PCOS as an occasion

PCOS seemed to afford participants a unique opportunity, or occasion, to consider their gender identity that may not have otherwise arisen had they not been diagnosed with PCOS. Some participants described that feeling “different” in general because of PCOS led them to reflect more critically on their gender, while others were compelled to think more deeply about gender due to their healthcare and social experiences.

Occasion to embrace gender diversity

Participants described the relationship between their gender identity and PCOS in a variety of ways. Many felt that having PCOS led them to reflect on their gender identity because PCOS affected their bodies in ways that challenged sex and gender norms. Ri Dan said:

I totally have always felt like having higher testosterone must have some bearing on your identity, you know? And also, physically it just makes you something different than a female. Female-only, I guess.

Participants felt that the ways in which they experienced the world through their bodies had informed their sense of gender, particularly because their bodies tended to deviate from AFAB body expectations. Three participants mentioned considering PCOS as an intersex condition because they felt as though their sex characteristics made their body neither female nor male. Corbin described how the term intersex has helped them understand the relationship between their sex and gender:

… I don’t think they’re the same, but I also don’t think they’re fully separate cause I don’t think I would experience gender the way I did if I didn’t have a sort of atypical body in terms of sex characteristics.

Several participants wondered about the relationship between having a non-normative body and identifying as transgender or non-binary, with two participants referring to the relationship as a “chicken-or-egg” situation—not knowing which came first (Nicholas, TB). A few participants wondered whether their hormone levels had biologically influenced their gender identity to some extent. Nicholas reflected:

… I wonder if like the high testosterone or whatever that I’ve had throughout my life, if that plays a role. Um… and I don’t want it to? For me, that would seem like… that maybe my non-binary-ness or transness isn’t really authentic or isn’t like real in a way. Which I don’t even know if that’s the right way to feel. This whole wormhole of things.

Other participants wondered whether they were able to embrace trans or non-binary identity more readily because their body naturally differed from social and medical expectations. TB said:

I don’t think that PCOS made me trans. I definitely don’t think that. But I do wonder about whether or not I’ve been able to be affirmed in certain types of ways. Like my voice has gotten deeper, I don’t take T but I make more testosterone… Yea, I think about whether or not that has made it easier for me to accept my transness.

Both Nicholas and TB’s statements indicate that they are still working through the facets of their identities. For many participants, reflections on gender in the context of PCOS was not a topic they had previously discussed, thus they often hesitated, repeated themselves, or apologized for having incoherent thoughts in the interviews. Participants used terms such as “rabbit hole” (TB) or “wormhole” (Nicholas) to describe the depth and complexity of their thoughts on the relationship between PCOS and gender identity, indicating a sense of worry and preoccupation with this topic. In contrast, other participants were confident in their assertions that having PCOS did not “make them trans” or expressed that they had not given it much thought. Reflecting on the ways that PCOS changes the body, Corbin said:

PCOS queers the body, but that doesn’t mean you have to identify as queer or that you have to be okay with that…

Corbin used queer as a verb to describe the ways that the PCOS body strays from cisgender and heterosexual expectations, while acknowledging that not all people with PCOS consider their bodies to be “queered” or want to have a “queered” body. Similarly, Wallace shared that learning about how cis-heteronormativity is maintained by fatphobia and racism helped them to embrace the embodiment of PCOS, stating:

… seeing the body as not bad, but queer, really empowered me… Queerness doesn’t just have to be identity in some abstract way, it can also be very physical.

Overall, participants expressed that having a non-normative body because of PCOS shaped their interactions which consequently influenced them to reflect more deeply on their gender identity. The ways in which participants conceptualized the relationship between PCOS and gender demonstrated the significance of PCOS as an embodied experience in grappling with identity.

Occasion for external invalidation

However, the occasion had its disadvantages. Participants also shared situations wherein having PCOS gave other people the occasion to question their gender identity or to dismiss their gender identity as a consequence of PCOS.

Beat described their parents’ reaction when they came out as bisexual and trans five years after their PCOS diagnosis:

… they mostly thought, “Oh you like girls because you have high testosterone” or like, “You think you’re transgender because you have high testosterone.”

For CL, the concern that their gender identity would be seen as a result of their PCOS prevented them from coming out to their family. They explained:

I think I would be concerned telling them that I’m non-binary because what if they respond with like the transphobic response of like, “Oh you just have this… thing. This like, problem with your hormones?”

It surfaced that attributing transness to a biological cause was invalidating for our participants who do not conceptualize their gender identity in a solely biological way. Reflecting on the biological interactions between PCOS and gender identity, Noah said:

“Maybe I’m trans because of this,” or, “Maybe this explains why I’m trans,” things like that, but at the end of the day, I have no control over having PCOS and I have no control over being trans so whether it explains it or not… it doesn’t invalidate anything.

There was also the concern that scientists or medical professionals might utilize PCOS diagnoses to invalidate queer or trans identification, in general. Referring to previous research that investigated the prevalence of PCOS among trans populations, Corbin described medical research as:

… a dangerous narrative… because of this eugenic push to find the biological cause of people who are seen as deviants in terms of gender, sexuality….

Darcy also explained their concern about research on trans people with medical conditions:

… there’s always that potential danger when transphobia still exists that this information could be used to harm us.

In general, participants seemed anxious and fearful about the possibility that their gender identity would be questioned because of PCOS and that health researchers would use hormonal theories to essentialize their gender identity. This represents an unforeseen aspect of PCOS that troubled our participants.

PCOS as a benefit

Many participants explained how having PCOS changed their bodies in ways that affirmed or validated their gender identity. Navigating the world in a body that differs from the expectations of an AFAB body because of PCOS could also be satisfying and empowering.

“Like a superpower”

Symptoms of PCOS commonly seen as “masculinizing”, particularly excess body and facial hair, were affirming for many of our participants as it made them appear and feel more closely aligned with their gender identity. Beat reflected on their feelings about their hirsutism:

… definitely PCOS can give a source of gender euphoria. For me, one of the symptoms is having body hair and facial hair. For someone like me who is more transmasculine, I don’t mind that; I like to have hairy legs and so that symptom – if you want to call it that – that’s a good thing for me. It’s nice to have.

Beat’s use of the term gender euphoria, which has previously been used in the literature to mean a “joyful feeling of rightness in one’s gender/sex” (Beischel et al., 2021), suggests satisfaction with their gender reinforced by having body and facial hair. Notably, Beat’s side comment (“if you want to call it that”) may indicate that they personally do not refer to their hirsutism as a symptom and thus may not attach the negative connotations of the condition to that aspect of PCOS.

PCOS-related hyperandrogenism also affected gender presentation, providing participants with the opportunity to experiment with their appearance and gender expression. Reflecting on body hair, Darcy, who is genderfluid, said:

… those aspects of having PCOS make it easier to sometimes feel less feminine in a positive way when I want to be.

This statement demonstrates a desire for control over their appearance and gender presentation. Similarly, Nicholas said:

Sometimes it’s nice, just like, oh, I already have a lower voice, could be a little muscular, and dress more masculinely and it has somewhat of a masculinizing effect.

Not only did participants gain a personal sense of affirmation from the “masculinizing” PCOS symptoms, but some participants also gained community validation for their gender presentation. Corbin reflected on the benefits of not removing their facial and body hair:

Sort of as I got more comfortable with it and with being trans, it really became something that I really appreciated about myself, and I got a lot of compliments from other trans people. It was just interesting for those aspects of myself, like my facial hair and my body hair to go from being very shameful to sort of feeling like a superpower. Like, “Cool, I can do this without testosterone.”

For many participants, embracing the ways PCOS affected their appearance gave them a new perspective on the condition altogether. Beat said:

I think the way that people frame [PCOS] is like, “Oh it’s always a bad thing”, when it’s not really.

Thus, while PCOS can alter one’s body to be physically different from normative expectations of sex and gender, this bodily variance can be liberating and empowering for trans or non-binary people who challenge sex and gender norms. As participants claimed their trans identities, their bodies supported their identification and were integrated into their sense of themselves.

Discussion

The present study is the first to specifically explore the experiences of gender-diverse individuals living with PCOS. Interviews with ten trans and/or non-binary people with PCOS revealed that PCOS is gendered in ways that can exacerbate the burden of the condition for people who do not fit within the cis-heteronormative discourse; yet certain PCOS symptoms can be beneficial to trans and non-binary people as they embody and validate their gender identity. PCOS can thus afford opportunities to critically reflect on individual gender and sex, as well as broader gender norms. While there are unique challenges faced by gender-diverse people who have this condition, there can also be previously unexplored favorable consequences. Thus, our findings indicate that PCOS is not a universally negative experience.

Participants found living with PCOS complicated by the gendered construction of the condition. This manifested in two ways; processes that are culturally associated with the corporeality of womanhood (e.g., menstruation) ignited discomfort for many participants; and the designation of PCOS as a “women’s health condition” in society and the medical establishment made participants feel excluded, alienated, and uncared for. Participants shared experiences of distress, anxiety, humiliation, and shame when managing PCOS symptoms that exacerbated their discomfort with their body. For example, most of our participants expressed that menstruation served as a reminder of a femininity they sought to reject. Consistent with previous literature, these findings indicate that menstruation as a symbol of femininity may have negative consequences on AFAB people who seek to distance themselves from such cis-heteronormative conceptualizations (Chrisler et al., 2016; Frank, 2020).

In addition, participants expressed frustration with being interpellated into a cis female identity due to the construction of PCOS that did not align with their sense of self. Participants experienced isolation and alienation from both online social spaces (e.g., PCOS forums, PCOS support groups) as well as clinical spaces because they were not cis women. Echoing previous research on AFAB trans and non-binary individuals’ healthcare experiences, our participants felt uncomfortable being in the gynaecological circle of care (Dutton et al., 2008; Sbragia & Vottero, 2020; Wingo et al., 2018). They attributed this discomfort to both their physical uneasiness with their own bodies and the assumption that they are women because they occupy these medical spaces. To address this discomfort, healthcare providers, particularly obstetrician/gynaecologists, need to use gender-inclusive language and should treat patients according to their personalized needs, rather than their presumed gender identity (Stroumsa & Wu, 2018). Resources such as the Standards of Care for the Health of Transgender and Gender Diverse People, Version 8 (Coleman et al., 2022) provide recommendations for healthcare providers to achieve holistic and individualized care; features of care that were spontaneously requested by participants in the present study. Collectively, the biological reality and social constructions of PCOS create an additional burden for trans and non-binary people living with this condition.

Participants reported that PCOS had been framed to them in ways that made them feel as though they were failures: failing to conform to medical notions of a healthy female and sociocultural ideals of a woman. While they did not identify as cis women, participants described feeling ashamed and unable to escape the expectations to approximate ideal femininity; a certain body shape, a lack of facial and body hair, and a desire for motherhood. These feelings of shame and failure are consistent with feelings expressed by cis women with PCOS who feel inadequate because their bodies do not conform to traditional norms (Kitzinger & Willmott, 2002; Pfister & Romer, 2017; Williams et al., 2015, 2016). Queer cisgender women with PCOS have shared similar frustrations with the heteronormative assumptions ascribed to their bodies, feeling that many concerns related to PCOS are overlooked in favor of a sole focus on fertility (Wingo et al., 2018). Collectively, these findings highlight the discomfort that a PCOS diagnosis can bring with its focus on feminine attributes and reproduction, as well demonstrating the often unattainable expectations of femininity that all AFAB bodies must enact. In concert with the literature on cis women with PCOS, our findings support that cisheteronormative assumptions about AFAB bodies significantly shape the PCOS experiences of people of all genders as PCOS discourse continuously reinforces restrictive gender norms.

In the present study, participants struggled to articulate their thoughts on the relationship between gender identity and PCOS; however, many speculated that both reciprocally influenced each other. Some participants suspected that the embodied experience of appearing different from the norm enabled them to more easily embrace their gender identity. Others contemplated whether having high testosterone levels influenced their gender identity while at the same time being concerned about the essentializing of their identity. Trans people describing their experiences with PCOS in online blogs report similar struggles trying to reconcile their gender identity and/or sexuality within the context of PCOS (Bell, 2018; Smit, 2019). Reflecting on scientific research investigating the prevalence rates of PCOS amongst trans people, one blogger wrote: “It hurts me to say that learning of the possibility that my identity could have been influenced by my PCOS led me to question the nature of my own gender and sexuality” (Smit, 2019; para. 7). This reflection resembles statements by our participants who wondered whether their PCOS diagnosis and symptoms drove their gender identity, often worrying that it would appear less authentic because of their condition. These findings are novel contributions to the PCOS literature, highlighting the perspectives of gender-diverse people with respect to the role of their PCOS on their gender identity.

While participants shared feelings of shame for not living up to feminine expectations because of their PCOS, they also had appreciation for the ways in which PCOS distinguished their bodies from a normative female body. Participants’ feelings that “masculinizing” PCOS symptoms were affirming is a new view in the PCOS literature and underscores the complex and fluid nature of gender identity. Hirsutism, deepened voice, and more muscular body type as a result of elevated androgen levels were all viewed as bringing our participants closer to their desired body type without gender affirming procedures. These sentiments have been previously expressed in online communities, blogs, and nonacademic articles about the experiences of trans and queer individuals with PCOS (e.g., Bell, 2018; ConfidentMachine, 2020; Myyouthismyown, 2019). For example, a member of one online community posted a smiling photo of themselves, crediting PCOS for their beard and receiving compliments on their ability to grow facial hair “pre-T” (Myyouthismyown, 2019). This post resembles Corbin’s experience of feeling validated and appreciated for their facial and body hair by their trans friends. Another trans Reddit user with PCOS showed gratitude for their PCOS after undergoing a social transition, stating, “If you told me a year ago that one day I’d be constantly petting my whiskers and actually mourning the thinner spots that came from years of trying to pull it out, I wouldn’t have believed you,” and, “I finally love all of me” (Fictionland, 2021). Taken together with our findings, these reflections demonstrate the previously unexplored possibility that PCOS may have certain benefits for gender-diverse people, despite the condition’s additional health burdens.

Limitations and strengths

Our cohort was self-selecting and recruited from PCOS online communities, suggesting the possibility that the current cohort may not be reflective of the greater gender-diverse PCOS populations. This may have inadvertently led us to study a sub-group of individuals who were enthusiastic about participation in order to affirm the themes that emerged. Indeed, one participant had recently published a zine describing their experiences living with PCOS and navigating their self-identification as a trans and intersex person. On the other hand, these perspectives provide valid insights into how some gender-diverse folks feel about PCOS and may start a more general conversation on the breadth of the experience.

PCOS diagnosis was also self-reported, although all participants confirmed having a medical diagnosis and provided the year of diagnosis and extensive accounts of their experience during the process of diagnosis within the interview. While we acknowledge that recruitment in healthcare settings such as endocrinologist or obstetrician/gynecologist clinics would have assured us of a PCOS diagnosis, it may also have introduced bias due to health-seeking behavior which was less likely in our community sample.

Finally, all recruitment and participation occurred online. The characteristics of people who frequent online communities may be different from the broader trans PCOS population as there are many reasons why an individual may not participate in online communities including access, interest, and ability. While conducting the research online may have had some disadvantages, it has shown to have specific strengths in addition to being a safe research practice during the COVID-19 pandemic. The efficiency, affordability, and accessibility of utilizing videotelephony technologies in qualitative research have been previously noted (Hanna, 2012; Iacono et al., 2016). Zoom is a particularly suitable software for virtual interviewing due to its convenience and security features (Archibald et al., 2019). Additionally, virtual interviews have been used in previous research on PCOS (Williams et al., 2015) and trans health (Ellis et al., 2015; Hoffkling et al., 2017; Sledge, 2019). One important strength of virtual interviewing is that it allows participants to contribute from a safe space which may facilitate vulnerability and honesty when dealing with sensitive topics (Hanna, 2012; Nehls et al., 2015).

Future directions

Our study described the unique perspectives of ten individuals whose gender does not conform to hegemonic notions of femininity or masculinity. While the present study did include one transgender man, the wider experiences of men with PCOS remain unexplored and may provide further information regarding the possible benefits and power of this condition for some individuals. While binary and non-binary trans people face some similar interpersonal and systemic challenges, non-binary people have reported more feelings of invisibility and exclusion, later identity exploration, and less concern about fitting in with gender norms than binary trans people (Fiani & Han, 2019). On the other hand, they also report higher levels of overall life (Rimes et al., 2019) and body satisfaction (Jones et al., 2019), as well as higher engagement in preventative health screening (e.g., Pap smears; Agénor et al., 2018). Therefore, the feelings of isolation, reclamation of non-normative bodies, and the types of engagement with the healthcare system expressed by our cohort may be more exemplary of non-binary, agender, genderfluid, and/or genderqueer people living with PCOS than the wider community, particularly binary trans men. Furthermore, as very few participants in our study cohort specifically sought a trans-inclusive healthcare provider, an investigation of the experiences of trans people with PCOS receiving health care that is labeled “trans-inclusive” is encouraged to assess the care and treatment options available in spheres that may be more gender-affirming.

Future studies should also seek to further incorporate the unique experiences of Black, Indigenous, and People of Color (BIPOC) in research on PCOS experiences in order to better understand the intersections of gender, race, and health in PCOS populations. For example, while our study included mostly white participants, lacking the racial diversity that exists in trans communities (Flores et al., 2016), the issue of medical racism nevertheless emerged as one participant described their doctor’s assumptions that they lacked access to healthy food and nutritional knowledge because they are Black. Just as PCOS is gendered, it is also racialized in biomedical research and the complex relationship between testosterone, hair, and race may further complicate how BIPOC trans folks experience PCOS (Carlin & Kramer, 2020). Previous qualitative research on PCOS has had predominantly white study cohorts (e.g, Kitzinger & Willmott, 2002) or does not report the race or ethnicity of their participants (e.g., Thorpe et al., 2019; Williams et al., 2015). Reports have indicated that Black women encounter financial, social, and physical barriers to receiving health care (Prather et al., 2018; Williams et al., 2011) and thus it is likely that people of color living with PCOS might face similar barriers to access. Additionally, one blogger described how PCOS-related health concerns such as hair growth or weight gain can be signs of normative femininity in certain ethnic communities and treating them may reinforce white standards of beauty (Gallardo, 2017). Therefore, future PCOS research should aim to include more BIPOC participants as their experiences navigating a condition that has gendered and racialized implications have been vastly overlooked.

Conclusions

As the first qualitative inquiry into the experiences of transgender and non-binary individuals living with PCOS, we found that PCOS is not comprehensively negative or positive. For gender-diverse people with PCOS, feelings of discomfort, shame, and isolation are common due to the gendering of PCOS; however, certain aspects of the condition may also be affirming and empowering. By exploring experiences of gender-diverse people living with PCOS, we were able to gain a unique perspective on this condition providing insight into the ways that social, cultural, and biomedical ideas of gender and sex affect the everyday lives of people with PCOS.

Our study demonstrates the importance of broadening PCOS discourse beyond the boundaries of cisheteronormative femininity as it is restrictive to people of all genders. It also has significant implications for gynaecological and reproductive health care, indicating the importance of gender-inclusive and individualized care to ensure all people with PCOS feel respected and validated. In particular, while reproductive and weight concerns are important for some persons with PCOS, it would behoove those who care for persons with the condition to recognize that these concerns are not important for everyone, including cis women. Overall, our study revealed that having PCOS is not a monolithically negative experience and that symptoms which may be considered disadvantageous for one PCOS patient, may be advantageous for another.

Funding Statement

This work was supported by the Jacqueline Ford Gender and Health Fund (to G. Einstein); and Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging from the Poslun Family Foundation, Canadian Institutes of Health Research, Alzheimer’s Society of Canada, and Ontario Brain Institute under Grant WJP-150643 (to G. Einstein).

Conflict of interest

The authors declare that they have no conflicts of interest.

Declaration of interest statement

The authors declare that they have no conflicts of interest.