Intersex people’s experiences of medical interventions, sex education, and physical intimacy

ABSTRACT

The study reported in this paper explores the experiences of 95 people with intersex variations constituting an international English-speaking sample who completed a mixed methods survey comprises questions designed by the authors to explore 1) genital variations and medical interventions (and pressures to undertake them), 2) experiences with sex education, and 3) experience of physical intimacy, including use of safer sex devices and sexually transmitted infections. Surgeries on minors were common and typically not consensual, often resulting in the need for revisions. Pressures for surgeries most commonly were made by doctors. Experiences of sex education often failed to be inclusive of intersex bodies, with information about menstruation and hygiene rarely provided, and many participants having to learn on their own. Participants had a diversity of experiences of physical intimacy beyond penetration. For those who had experienced penetration, vaginal intercourse was enjoyable for some, but many found it painful. Conversely, anal intercourse was enjoyed by many and rarely found to be painful. The paper concludes by highlighting the importance of an intersex-specific approach to sexual health for this population.

KEYWORDS:

• Intersex
• physical intimacy
• sex education
• medical intervention

Disclosure statement

We have no known conflict of interest to disclose.

Data availability statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data are not available.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Notes

1. Intersex includes a wide range of variations that do not fit stereotypical understandings of ‘female’ and ‘male’ bodies. Such variations are innate, including genetic, hormonal, and/or genital variations, and may be apparent at birth or as a child develops. Some authors refer to intersex as ‘disorders of sex development’, which we regard as unnecessarily pathologising of intersex people (see e.g. Feder, 2009). A particular intersex variation may or may not be associated with a particular medical condition. Intersex is distinct from gender diversity, although variation in gender among intersex people is as diverse as amongst people who are not intersex. We use the phrase ‘people with intersex variations’ to include all people with such variations regardless of whether they specifically identify as intersex, have a specific diagnosed medical condition, their gender, or their gender history.

2. See (Barker, 2018), for critique of the heterosexist, androcentric, and phallocentric elements of this phrase. Barker uses the alternative ‘enveloping’ to focus on the partner who is using their vagina, rectum, etc. We have opted to retain ‘penetrative’ in this paper for clarity but acknowledge its significant limitations.