Chronic genitopelvic pain, defined as pain in the genital and/or pelvic region lasting three months or more, affects up to 27 per cent of people and has a significant impact on their psychological health, relationship adjustment and overall well-being.
In most research on chronic genitopelvic pain, the people in the studies represent sexual and gender majorities: people who identify as heterosexual and cisgender, the latter meaning that their gender identity is aligned with their sex assigned at birth. Most of these studies focus on a common symptom of chronic genitopelvic pain: pain experienced during “sex,” defined as penile-vaginal intercourse.
This point of view neglects the experiences of sexual and gender minorities (those who identify as lesbian, gay, bisexual, queer, trans, two-spirit, etc.). It limits the potential experience of pain during penetrative sexual activity to those engaging in a narrowly defined heterocentric idea of sex: penile-vaginal intercourse. That limits ideas about the bodies and identities of people who can experience this type of pain to the experiences of cisgender individuals.
Broadening the definition of sex
Definitions of sex can be broadened to include any activity that engages someone in a sexual way; even “just” fantasizing can be “sex” for some. Those definitions can incorporate responses during sexual activity, like arousal or orgasm.
Expanding the definition of sex removes the framework of heterocentricity. Sex then takes on a different meaning — one that can apply to a variety of activities, responses, identities, bodies and contexts (solitary or partnered, for example).
Then, pain during sex (in the expanded definition) can theoretically affect anyone who engages sexually.
According to a survey, 13 per cent of the Canadian population — which amounts to approximately five million people — identifies as part of a sexual or gender minority. It’s reasonable to assume that some of them also experience chronic genitopelvic pain.
My research indicates that up to 45 per cent of sexual minority women report experiencing pain during sex. In this study, my team and I examined the characteristics and experiences of chronic genitopelvic pain in a sample of more than 800 lesbian, bisexual and heterosexual women. We found that experiences and characteristics of pain were similar among sexual minority and majority groups.
In another study, my team and I reported on the under-investigated phenomenon of pain during receptive anal penetration. Pain during receptive anal penetration has been reported primarily in men who have sex with men, but it can affect anyone who engages in this activity. Although mild in most, the pain can be long-standing and severe.
Reports of prolonged genitopelvic pain following gender-affirming bottom (genital) surgery in trans individuals have also been documented, as well as painful orgasms in trans men on testosterone, which is part of their lifetime regimen of hormones. However, very little research attention has been devoted to chronic genitopelvic pain in trans individuals.
Assumptions can have negative consequences for people in real life. If it is assumed that chronic genitopelvic pain conditions associated with pain during sex affect those only who engage in penile-vaginal sex, it can make it more difficult to have honest conversations with health-care providers.
This is a significant issue in health care beyond chronic genitopelvic pain. For example, women have been excluded from HIV research based on assumptions — for example, that it is not common in women — rather than fact: research has shown that women represent about half the HIV cases. Assumptions do not always correspond with scientific facts.
My team and I are currently working on a research program investigating chronic genitopelvic pain characteristics and experiences in sexual and gender minorities. It uses broad definitions of sex, and a “choose your own adventure”-type survey that examines experiences over time. This enables individuals — based on their responses — to answer questions tailored to their experiences and preferences.
Importantly, the creation of this study has been informed by researchers, clinicians, those with lived experience and people representing a variety of identities to best capture the diversities of chronic genitopelvic pain in LGBTQ+ people.
The results of this research program will centre the representation of sexual and gender minorities in the field of chronic genitopelvic pain. It will inform clinical practice and future research by educating health-care providers and creating specialized services for LGBTQ+ individuals.
In June, in Canada, rainbows become prominent to celebrate Pride month. Pride is a time to collectively promote visibility and equality of lesbian, gay, bisexual, trans, two spirit and queer people.
Since the Stonewall uprising, people who identify as LGBTQ+ have been fighting for equal rights and representation in all areas of life. Although some progress has been made, their representation in health research overall, and on health research focusing on chronic genitopelvic pain, has been lagging. It is time for this to change.
Caroline Pukall (she/her|elle) receives funding from the American Institute of Bisexuality, the National Vulvodynia Association, the International Society for the Study of Women's Sexual Health, the Canada Foundation for Innovation, and the Canadian Institutes for Health Research. She is the Chair of the Subcommittee for Female Genitopelvic Pain for the International Consultation for Sexual Medicine (International Society of Sexual Medicine) and an Expert Member on the Project Management Team for the Core Outcome Set for Provoked Vestibulodynia (Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU)).