“Having Pain is Normal”: How Talk about Chronic Pelvic and Genital Pain Reflects Messages from Menarche

ABSTRACT

Chronic pelvic and genital pain conditions (CPGPCs) often go undiagnosed and untreated in women for years after symptom onset. This is due, in part, to communication challenges experienced by patients such as difficulties describing pain and the stigmatized nature of CPGPCs. However, studies have yet to explore how early messages about menstruation, a context similar in its stigmatized and painful nature, may contribute to undertreatment and diagnostic delays for adult women experiencing CPGPCs by normalizing pelvic and genital pain when they are young girls. Guided by critical feminist theorizing (CFT) and sensitized by an existing typology of negative messages communicated by mothers to daughters about menstruation, this study analyzes interviews with 17 women with CPGPCs to explore how features of negative messages about menstruation (i.e., information restriction and omission) appear and recur in women’s descriptions of their later CPGP experiences. Findings suggest that early life talk about menstruation forms a communicative precedent for young girls which later constrains how they talk about CPGP in adulthood. Findings also problematize early-life communication about menstruation, which normalizes women’s pain, and suggest connections to outcomes (e.g., diagnostic delays) for women with CPGPCs. Theoretical and practical implications are offered. Limitations and future directions are described.

Notes

1. Individuals with CPGP related to conventionally female sex organs were invited to participate in this study regardless of sex or gender identity. However, like much of the extant literature, all who participated identified as cisgender women. Thus, this paper uses woman/women when referring to individuals who suffer from CPGP. Some individuals experiencing chronic pelvic and genital pain affiliated with female sex organs do not identify as women. Trans, agender, and nonbinary individuals in need of services provided by sex-segregated systems (e.g., seeking CPGP care in a “women’s clinic”) are forced to seek treatment in institutions that erase their identities. This erasure is characterized by “a politics of recognition regarding being in the appropriate place or possessing the correct anatomy to be provided service” which can impact healthcare availability and quality (Bauer et al., 2009, p. 355). The lack of representation of non-cisgender individuals is a limitation of this study.

2. Participants’ level of sexual activity (i.e., sexually active or inactive) was assessed by asking participants to label themselves. To avoid pain, women with CPGP may have infrequent sex or engage in alternatives to penetrative intercourse (Hintz, 2019b). Participants were encouraged to determine for themselves how “active” their sex lives were (e.g., one participant identified as sexually active though she had not engaged in sex in a year due to her pain).

3. Two participants who reported general menstrual pain were included in the study because they sought medical attention to treat recurring pain during menstruation. Although general pain during menstruation is not considered CPGP, these participants have been included because “general menstrual pain” may often evolve into a diagnosable CPGP condition later, and they indicated that their symptoms qualified for the study.