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

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Psychology & Sexuality
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Intersex people’s experiences of medical
interventions, sex education, and physical
intimacy
Israel Berger, Y. Gavriel Ansara & Damien Riggs
To cite this article: Israel Berger, Y. Gavriel Ansara & Damien Riggs (2023): Intersex people’s
experiences of medical interventions, sex education, and physical intimacy, Psychology &
Sexuality, DOI: 10.1080/19419899.2023.2252446
To link to this article: https://doi.org/10.1080/19419899.2023.2252446
Published online: 28 Aug 2023.
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RESEARCH ARTICLE
Intersex people’s experiences of medical interventions, sex
education, and physical intimacy
Israel Berger
a,b
, Y. Gavriel Ansara
c
and Damien Riggs
d
a
Sydney Health Ethics, School of Public Health, University of Sydney, Camperdown, Australia;
b
Child and Adolescent
Mental Health Service, Goulburn Valley Health, Shepparton, Australia;
c
Ansara Psychotherapy, Melbourne,
Australia;
d
College of Education, Psychology and Social Work, Flinders University, Adelaide, Australia
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 comprised of 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 pro-
vided, 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 inter-
course was enjoyed by many and rarely found to be painful. The paper
concludes by highlighting the importance of an intersex-specic
approach to sexual health for this population.
ARTICLE HISTORY
Received 14 May 2022
Accepted 18 June 2023
KEYWORDS
Intersex; physical intimacy;
sex education; medical
intervention
Introduction
People with intersex variations
1
constitute a diverse population who have historically and presently
been subjected to high levels of invasive and often unnecessary medicalisation (Jones, 2022). Such
medicalisation has taken, and in some contexts continues to take, the form of excessive scrutiny on
people’s bodies, surgeries performed on infants’ reproductive organs without parents giving full
and/or informed consent, and hormones and surgeries undertaken in the context of coercion driven
by a discourse of ‘normalisation’ (Carpenter, 2018). These and other forms of medicalisation are
shaped both by endosexism – the assumption that all people’s physical sex characteristics align with
the medical or societal expectations of male or female bodies (George et al., 2021, p. 6; Peel &
Newman, 2020) – and by cisgenderism: the ideology that delegitimizes people’s own understand-
ings of their bodies (Ansara, 2010, 2015; Riggs et al., 2015).
Given the medicalised focus that has predominated to date in research on people with
intersex variations, there has been a primary focus on the physical eects of surgeries. This
focus on surgical success or failure aligns with the dominant discourse of ‘normalisation’ and
the aim of surgeries to produce bodies normatively marked as female or male (Ansara, 2013;
CONTACT Israel Berger israel@israelberger.com Sydney Health Ethics, School of Public Health, University of Sydney,
Camperdown, Australia
PSYCHOLOGY & SEXUALITY
https://doi.org/10.1080/19419899.2023.2252446
© 2023 Informa UK Limited, trading as Taylor & Francis Group

Carpenter, 2018). Yet such a focus only serves to reinforce endosexism and cisgenderism, and
does very little to attend to the actual needs of people with intersex variations. In particular,
lacking from the literature to a signicant degree is a focus on people’s experiences with sex
education, and to a lesser degree people’s experiences of physical intimacy. As such, the
study reported in the present paper sought to explore the experiences of people with
intersex variations focused specically on these two areas, alongside a focus on experiences
of medical interventions, given that the eects of such interventions are often intertwined
with subsequent experiences of intimacy, and that experiences of intimacy among people
with intersex variations are rarely a focus in sex education. Information in these areas is
presented in the context of background demographic information about the sample, given
that understanding medical interventions and their eects on intimacy cannot be done
absent of information about people’s bodies.
In terms of the previous literature on sex education, a study of 272 Australian people with
intersex variations (Jones et al., 2016) reported that 14% of people with intersex variations
had contracted an STI and that no available safer sex barrier methods worked for some
participants’ bodies. Some participants specically wanted more information to be available
in terms of sexual health specic to people with intersex variations. Interview research
undertaken in the United Kingdom and Sweden (Lundberg et al., 2021), while not focused
specically on sex education, highlights that for the young people interviewed, fear of
rejection by intimate partners, feeling compelled to tell people about an intersex variation,
and navigating normative expectations about bodies, all made the topic of physical intimacy
challenging for young people with intersex variations.
In terms of previous research on experiences of physical intimacy, this constitutes a more
substantial area of focus in the literature. The literature on physical intimacy has primarily
focused on two groups of people: those with Androgen Insensitivity Syndrome (AIS: either
complete or partial), and those with hypospadias. In terms of AIS, research by Fliegner et al.
(2014) compared 11 women with AIS with 49 women with Mayer-Rokitansky-Küster-Hauser
Syndrome and a non-clinical comparison group. Women in the AIS group reported lower sexual
satisfaction. Minto et al. (2003a; b) undertook two studies with women with AIS: one involving 66
women and one involving 39 women. In the former study, a majority of participants reported
‘sexual problems’ (including with penetration, orgasm, and non-sexuality). In the latter study,
those who had been the recipients of clitoral reduction surgeries were especially likely to report
‘problems’. Finally, in a study of 14 women with AIS, Wisniewski et al. (2003) found that most
participants reported having a healthy libido and ability to orgasm, although this was not true
for those who had received clitoral reduction surgeries.
In terms of hypospadias, Reddy et al. (2015) surveyed 15 men who had undergone reconstructive
surgery. The majority reported being sexually satised, but this did not mean an absence of
‘problems’ (such as abnormal ejaculation, dicult orgasms, diminished sensation, diculty main-
taining erection, poor penile image, and abnormally curved erections). The same ‘problems’ were
reported by Aho et al. (2000) in their study of 46 men who had undergone reconstructive surgery, of
whom 15 were unhappy with surgery outcomes, and for whom two intercourse was impossible.
Similarly, van der Zwan et al. (2013) study of 14 men with hypospadias found that those who had
reconstructive surgery (mean rst surgery 2.7 years, 1–6 surgeries) were not satised with the
appearance of their penis and felt their sexual development had been negatively inuenced, leading
to reduced enjoyment in sexual intimacy.
As can be seen from the brief summary of the literature above (with similar ndings for studies
that have included other groups of people with intersex variations, see for example Kleinemeier
et al., 2010; Warne et al., 2005), many people with intersex variations report unhappiness with their
bodies and their intimate lives, primarily due to the outcomes of surgeries but also due to societal
expectations about bodies. Adding to this existing literature, the study reported in the present paper
sought to address the following research questions:
2I. BERGER ET AL.

(1) What are the demographic details of the sample in terms of a) intersex variations b) hormone
treatment and consent, c) surgical interventions and d) social pressures related to medical
decisions;
(2) What have been the experiences of the sample with regard to sex education, including with
regard to a) who provided it, b) adequacy for their needs, and c) menstruation experiences (as
applicable) and education; and
(3) What have been the experiences of the sample with regard to sexual intimacy, including a)
forms of physical intimacy engaged in, b) the use of safer sex devices, and c) sexually
transmitted infections.
Method
Participants
Ninety-ve participants took part in an online survey. Most participants (n = 58, 61.05%) reported
a binary gender. Those who did not described genders such as gender uid, non-binary, agender,
and simply transgender without a specic binary gender (cf. Hegarty et al., 2018). Of those who
completed a question about ethnicity, most were white or European (n = 38, 73.08%). Participant
demographics are summarised in Table 1. Participants were recruited via social media posts to
international intersex organisations and support groups, identied through author networks. The
authors did not pay to advertise the survey nor were participants remunerated for their time. The
survey was open between March and June 2019.
Materials & procedure
Participants were provided with an online information sheet prior to beginning the survey. Consent
was indicated by proceeding with the anonymous survey. A list of intersex and crisis resources were
provided both at the end of the survey and for participants who ended the survey early. This study
was approved by the [blinded for review] Research Ethics Committee, and the survey was also
reviewed by four intersex community members known to the authors who have chosen to remain
anonymous.
Design
The cross-sectional survey was designed to assess the experiences of medical interventions, the sex
education needs of intersex people, and experiences of physical intimacy, and to explore demo-
graphic dierences. Participants took on average 20 minutes to complete the survey. The survey
began with a series of questions establishing intersex status and went on to ask about exogenous
hormones received with the participant’s consent (regardless of age of treatment), experiences with
menstruation and education around menstruation, surgeries performed and consent (regardless of
age of surgery), specic urogenital variations, pressure to have/not to have surgery, sex education
before and after age 18, how relevant such sex education was to them, and how they felt about their
bodies at the time, sexual experiences, experiences with safer sex barrier devices, experiences of
genital infections (including STIs), education about hygiene, and general demographic information.
Pressure to have or not to have surgery was measured on two vectors: strength of pressure (0 to 2:
not pressured, a little pressured, or very pressured) and direction of pressure (−1, +1: not to have
surgery or to have surgery) for each source of potential pressure. Self-report feelings of self-esteem
and relevance of education were recorded on a 100-point scale using a slider.
While we recognise that sexual pleasure takes many forms, we focused on what is typically
described as ‘penetrative sex’
2
in the survey questions on sexual experiences for two reasons: 1)
‘penetrative sex’ is associated with urinary tract infections (Mohiuddin, 2019) and 2) surgeries to
PSYCHOLOGY & SEXUALITY 3

Table 1. Sociodemographic characteristics of participants at Baseline (N = 95).
Characteristic n%MSD
Age 39.96 13.93
Current Gender
Woman/female 32 33.68
Man/male 26 27.37
Non-binary 31 32.63
Agender 6 6.32
’Intersex’ gender 22 23.16
’Transgender’ gender 4 4.21
Considers self to have an intersex variation
Yes 88 92.63
No 5 5.26
Don’t know 2 2.11
Gender first raised
Girl 39 41.05
Boy 53 55.79
Mixed 3 3.16
Age first began identifying as current gender
Always 39 41.49
Since childhood 16 17.02
As a teenager 13 13.83
As an adult 26 27.66
Sex marker on main identity document
Female 45 47.37
Male 47 49.47
X, Indeterminate 3 3.16
Sex marker on original birth certificate
Female 39 41.05
Male 49 51.58
X, Indeterminate 2 2.11
Don’t know 5 5.26
Ethnicity (N = 52)
White/European 38 73.08
Mixed 6 11.54
Middle Eastern 3 5.77
Indigenous 3 5.77
Black/African/African American 1 1.92
Asian 1 1.92
Religion (N = 56)
None/Atheist/Agnostic 24 42.86
Christian 9 16.07
Spiritual 7 12.50
Pagan 5 8.93
Jewish 4 7.14
Buddhist 4 7.14
Mixed 2 3.57
Language(s) other than English 23 40.35
Current country/region
USA 44 46.32
Australia 27 28.42
Europe (not UK) 12 12.63
UK 7 7.37
SE Asia/Oceania 3 3.16
NZ 2 2.11
Country where raised (N = 54)
USA 29 53.70
Australia 12 22.22
Europe (not UK) 5 9.26
UK 3 5.56
SE Asia/Oceania 3 5.56
NZ 3 5.56
(Continued)
4I. BERGER ET AL.

‘normalise’ intersex bodies focus on the patient’s ability to perform in this manner regardless of their
potential for sexual desire in adulthood (Creighton & Liao, 2004). We also allowed write-in responses,
which are reported in the results. Numerical responses also allowed write-in responses, which were
coded with a ceiling eect. For example, for number of surgeries per life stage was coded as 5 if
written in as ‘several’, ‘more than I can count’, etc. and left blank if written in as ‘don’t know’.
Descriptive statistics, χ
2
, and binary logistic regression are reported for quantitative survey items.
Not all participants completed all items (given some survey items were not relevant to all partici-
pants). However, all participants included in the sample completed sucient items to warrant
inclusion as the nal sample. Where relevant, the results indicate the sub-samples to which specic
ndings refer.
Content analysis was used to analyse the open-ended questions. As outlined by Hsieh and
Shannon (2005), this involves (a) repeated readings of the data corpus, (b) developing codes by
highlighting key words that capture frequently occurring concepts, (c) reducing codes in order to
minimise overlaps, (d) examining codes for patterned responses, in order to group codes into
categories, and (e) examining categories to determine whether or not they accurately reect the
data corpus. As noted by Hsieh and Shannon, a limitation of conventional content analysis is that
it does not utilise member checking or interrater reliability. Given the questionnaire was anon-
ymous, member checking was moot for this study. In terms of interrater reliability, Hsieh and
Shannon note that all analyses are subjective, and thus should be viewed as oering one
interpretation derived by the researcher. That said, given the brevity of responses provided by
participants (most participants provided only a brief sentence response to each open-ended
question), it is reasonable to suggest that the content analyses undertaken captures the semantic
meaning of each response.
Results
Research question 1
Intersex variations
Half of participants (n = 41, 53.25%) were aware that they were born with genitals that were not
considered stereotypical ‘male’ or ‘female’ genitals (sometimes called ‘ambiguous genitalia’), and
a further seven (9.09%) were unsure whether their original genital conguration was considered
typical. Twenty-nine participants (37.66%) reported being intersex due to another reason (e.g.
hormonal variation, gonadal variation, or a recognised genetic syndrome). Strikingly, over half of
participants (n = 38, 51.35%) did not know how to describe their genital variation or did not know
their original genital conguration. Of those who reported their genital variations, 11 (30.56%)
Table 1. (Continued).
Characteristic n%MSD
Highest degree (N = 56)
Some high school 7 12.50
High school graduate 8 14.29
Some college/university 10 17.86
Associate degree 10 17.86
Bachelor’s degree 11 19.64
Graduate degree 10 17.86
Employment status (N = 54)
Employed 37 68.52
Full-time student 8 14.81
Retired 2 3.70
Unemployed 7 12.96
*not all participants completed all items.
PSYCHOLOGY & SEXUALITY 5

participants reported being born with hypospadias, 9 (25.0%) with micropenis, 6 (16.67%) with
clitoromegaly only, 5 (13.89%) with urogenital sinus ± clitoromegaly, and 2 (5.56%) with vaginal
agenesis related to Mayer-Rokitansky-Kuster-Hauser syndrome.
Hormone treatment and consent
Most participants (n = 69, 81.18%) reported having had hormone levels that were atypical for the
gender in which they were raised, and a further 9.41% (n = 8) did not know. Specic hormones, the
age they were rst administered, and their consent status are given in Table 2. Of those who have
been physically able to be pregnant, 15 (30.00%) reported having used or been given hormonal
contraception. Sixty-six participants reported receiving sex hormones or sex-hormone blockers for
non-contraceptive purposes. One participant reported being given an antidepressant and told that it
would initiate puberty.
Surgical interventions
Most participants (n = 40, 67.80%) had received some form of surgery to their genitals or
a gonadectomy as minors, and only one participant had received surgery as an adult without having
been operated on as a minor. Most of the participants (n = 22, 70.97%) reported having had genital
surgeries performed as infants (Mdn = 1, range 1–5). Fifteen participants (48.39%) reported having
had genital surgeries performed as children (Mdn = 2, range 1–7), and four (12.90% reported having
had genital surgeries performed as teenagers (Mdn = 1, range 1–2).
Fifteen participants reported having had genital surgeries as adults. Although most adult genital
surgeries were consensual (n = 25, 86.21%), surgeons performing genital surgeries on minors did so
almost universally before the participant was able to give consent, and for some surgeries were
performed through coercion (n = 67, 97.10%), χ
2
= 71.00, p < 0.001. The median total surgeries was 3
(range 1–10), whereas the median surgeries as minors was 2 (range 1–10). Nine (24.32%) participants
reported that they had had surgeries to improve bowel function or urination (Mdn = 2, range 1–7).
Nine (24.32%) participants also reported having revisions to correct previous surgeries (Mdn = 1,
range 1–6). Some participants who received surgery as children reported vulvar pain and even
stretching and tearing of old surgical scars.
Surgeons had removed the gonads of half of those who responded at some stage (n = 33,
47.14%). Only once (1.4%) was this the result of an emergency (age not specied), and the majority
of surgeries occurred as minors (n = 19, 57.58%): as an infant (n = 12, 36.36%), child (n = 6, 18.18%), or
teenager (n = 1, 3.03%). Thirteen (40.63%) participants were adults at the time of their gonadectomy.
Of those on whom surgeons had performed gonadectomies at any age, only 34.38% (n = 11), all of
whom were adults at the time, consented to the procedure without coercion.
Social pressures related to medical decisions
The majority of participants (Table 3) reported experiencing pressure about surgery from doctors (n
= 31, 67.39%), with the vast majority of those participants experiencing pressure to have surgery (n =
Table 2. Hormones received, consent status, and age first Started.
Hormone
Age First Started With Consent
β pMdn Range n n %
Any Hormone 69
Estrogens 16 11–60 44 29 65.91 0.360 0.01
Progesterones 16 11–50 19 16 84.21 n.s.
Testosterones* 21 7–57 42 28 66.67 0.117 0.04
Hormone Blockers 25.5 9–65 19 16 84.21 n.s.
Growth Hormones** 10 7–13 8 1 12.50 n.s.
*One participant who was given short term testosterone treatment as part of a hypospadias repair at age 1 year was removed
from the age calculation.
**One participant reported using GH as a performance and image enhancing drug and was removed from this analysis.
6I. BERGER ET AL.

29, 93.55%). A large minority of participants reported feeling pressured about surgery by psychol-
ogists/counsellors (n = 19, 45.24%) or other health professionals (n = 19, 42.22%). Overwhelmingly
with these professionals, pressure was also in favour of surgery (n = 15, 78.95% and n = 18, 94.74%,
respectively). Many participants also reported feeling pressured by family members (n = 20, 52.63%),
friends (n = 16, 39.02%), or other peers (n = 13, 32.50%). For those who reported feeling pressured,
50.0% (n = 10) reported pressure in favour of surgery from family, 62.50% (n = 10) from friends, and
84.62% (n = 11) from other peers.
Free-text responses indicated that participants felt that during the decision-making process,
others ‘assumed’ that they would have surgery, whether it be because they were a girl and ‘should’
have female anatomy or because the person would presumably have stereotypical forms of ‘hetero-
sexual intercourse’. Some participants noted that their surgeries were not treating them, but rather
were treating their parents’ and doctors’ anxiety about their bodies. Many participants reported
feeling pressured by doctors and being told they must have surgery and/or hormones, as one was
told, it was ‘to make a man out of’ him.
Others spoke of decisions being made without their input based on anatomy rather than how
they lived their lives, for example, being made surgically female based on the presence of ovaries
rather than his gender of rearing. Some participants were subjected to scare tactics and medical
threats, such as being told that they would get cancer or had a high risk of cancer if they did not have
an operation. While some chose freely based on this information, others did not feel they were given
the option to refuse. Some participants wanted to have surgery due to pain or psychological
discomfort, and some of these participants expressed concern about gatekeeping and being referred
to therapists rather than being treated medically when trying to access services. Conversely, it was
dicult for some participants to access non-surgical options such as vaginal dilation due to pressure
from doctors to have surgery. Some participants, particularly men, lamented the fact that there was
no surgery that could achieve the results they would nd useful.
Research question 2: sex education
Provision of sex education
Most participants received some teaching about sex before age 18 (n = 54, 84.38%), with 70.37% (n =
38) being taught by an older person or with a sex education resource. Sources of information about
sex before age 18 commonly involved age group peers (n = 30, 46.88%), schoolteachers (n = 28,
43.75%), and parents (n = 22, 34.38%). Twenty-seven (42.19%) participants reported that they
learned about sex through trial and error. As a whole, health professionals were a minor source of
information (n = 7, 10.94%), and the internet (n = 8, 12.50%) was also a minor source of information
about sex. Other sources (n = 14, 21.88%) included other older people, media, and books.
Participants reported that the sex education that they received before they were 18 years old was
largely irrelevant to their bodies (M = 29.62, SD = 29.45) and to their sexual experiences and desires
(M = 31.04, SD = 25.08). Participants reported their self-esteem being very low during this period of
learning (M = 19.88, SD = 25.08).
Table 3. Pressure for and against surgery.
Source of Pressure
Strength Direction
SummaryM SD M SD
Family Members 0.88 0.94 0.10 1.02 Split for and against surgery
Friends 0.48 0.71 0.20 1.01 Split for and against surgery
Other Peers 0.49 0.74 0.60 0.83 Somewhat pressured to have surgery
Doctors 1.04 0.85 0.88 0.49 Very pressured to have surgery
Psychologists/Counsellors 0.57 0.70 0.60 0.82 Somewhat pressured to have surgery
Other Health Professionals 0.57 0.75 0.90 0.45 Somewhat pressured to have surgery
PSYCHOLOGY & SEXUALITY 7

After age 18, 61.67% of (n = 37) participants reported receiving sex education, and 81.08%
(n = 30) of these participants were taught by an older person or sex education resource. In
terms of sources of information about sex after age 18, common sources included age group
peers (n = 23, 38.33%), college classes (n = 11, 18.33%), and the internet (n = 22, 36.67%).
Primary care physicians/general practitioners (n = 11, 18.33%), other doctors (n = 9, 15.0%),
nurses (n = 3, 5.0%), and other health professionals (n = 8, 13.33%) were involved to a minor
degree. Parents (n = 2, 3.33%) were a very minor source of sex information for adults. Other
sources (n = 14, 23.33%) included older people, support groups, medical literature, and media.
Thirty-six (60.0%) participants reported also guring sex out on their own as adults. Similar to
participants who received information before age 18, participants who received information as
adults reported that the sex education they received was largely irrelevant to their bodies (M =
55.35, SD = 33.12) and to their sexual experiences and desires (M = 57.57, SD = 35.42). However,
participants reported that this information was signicantly better than education received
before age 18 (t(45) = 6.83, p < 0.001 and t(46) = 4.18, p < 0.001, respectively). During this period
of learning, self-esteem was also low (M = 38.08, SD = 26.97), yet better than self-esteem before
age 18, t(45) = 5.28, p < 0.001. Participants also reported currently feeling much better about
their bodies (M = 62.37, SD = 31.95) even compared to during their adult sexual learning period,
t(52) = 6.65, p < 0.001.
Menstruation experiences and education
Thirty ve percent (n = 28) of participants reported having ever menstruated, and an additional four
(5.06%) were unsure. Participants were generally given minimal information about menstruation
before it occurred (M = 31.38, SD = 34.30). In terms of sources of information about menstruation,
across the entire sample (including participants who have never menstruated), common sources
included schoolteachers (n = 32, 42.67%), age group peers (n = 31, 41.33%), and parents (n = 27,
36.0%). As a whole, participants reported that health professionals were a minor source of informa-
tion. Across all health professions mentioned by participants, only 14 participants (18.67%) reported
receiving menstruation education, while over a quarter (n = 19, 25.33%) reported learning via trial
and error. The internet was also a source of menstruation information for a minority of participants
(n = 11, 14.67%). Other sources (n = 10, 13.33%) included older people, siblings, books, and medical
literature.
Research question 3: experiences with sexual intimacy
Penetrative sexual experiences
Table 4 shows participant responses to penetrative sex using their applicable genitals. Additionally of
note, six participants provided open-ended responses noting that they enjoyed performing oral sex
and four wrote in that they enjoyed using their hands to stimulate their partner(s).
It is notable some participants who could potentially penetrate their partners had never tried. We
also note that many participants enjoyed receptive anal sex (including orgasm from it), although we
note that the rectum is not self-lubricating and lubrication should be applied (and re-applied if
needed) to prevent tissue damage. We considered that people with phalluses smaller than
Table 4. Penetrative’ sexual experiences using participant’s body part.
Body Part
Painful Did not like Neutral Enjoyed Orgasmed Never Tried
n%n%n%n%n%n%
Vagina/urogenital sinus (N = 32) 14 43.75 6 18.75 10 31.25 15 46.88 9 28.13 4 12.5
Penis/phallus/large clitoris (N = 50) 11 22.00 9 18.00 9 18.00 10 20.00 9 18.00 18 36.00
Anus/rectum (N = 55) 2 3.63 8 14.55 5 9.09 13 23.64 20 36.36 19 34.55
8I. BERGER ET AL.

endosexist and cisgenderist norms may have engaged in receptive anal sex as an alternative to being
a penetrative partner, but receptive anal sex was not associated with sexual limitations in other
areas. In fact, enjoying receptive anal sex was negatively associated with never trying to penetrate
a partner, χ
2
= 5.69, p = 0.02.
Use of safer sex barrier devices
Participants reported a range of experiences with safer sex barrier methods (Table 5). Overall, the
‘male’ condom was dicult for penetrating partners to use (and some opted for nger cots as an
alternative) but easy for receptive partners. Conversely, the ‘female’ condom was easy for penetrat-
ing partners and dicult for receptive partners to use. Many participants also reported simply not
wanting to use the ‘female’ condom. Dental dams were unpopular, but those who had used them
tended to nd them easy to use.
Strategies participants used to stay safe sexually were consistent with those of the general
population, including misconceptions such as that one can tell who has an STI, or that asking
about STI status is protective, and shared some of the frustrations expressed by women who have
sex with women as well as by men of trans experience, particularly that currently available barrier
methods do not meet their needs (Dhoull et al., 2018; Jones et al., 2016; Sevelius, 2009; Stephenson
et al., 2017; Whitlock, 2021).
When asked how barrier devices could be improved for their bodies, many participants
were unsure how or if they could, and many were satised with the barrier devices available.
Others, however, specically mentioned that condom size was a problem that could be easily
rectied, as there is a large gap between the smallest available condom size and that of
a nger cot. Some participants mentioned that they experienced condom slippage and
inadvertent body uid contact due to vaginal secretions and speculated whether this could
be ameliorated by an additional piece of latex at the base of the condom. A similar
suggestion was made for condoms to be eective for people with proximal hypospadias.
Others discussed the need for larger dental dams and dental dams with indentations that
would allow for a wider variety of body shapes and genital congurations to be secure
within the barrier.
Sexually transmitted infections
Most participants report never having had an STI (n = 44, 80.0%, Mdn = 0, range 0–5). Sixteen (27.59%)
participants reported having had a genital skin rash at some point over the last 12 months. Half (n = 27,
48.21%) of participants reported having had a urinary tract infection over the past 12 months, while
two-thirds (n = 37, 63.79%) reported having had lower urinary tract symptoms without conrmed
infection. Vaginal infections were reported by 20.93% (n = 9) of participants with this anatomy.
Table 5. Usability of existing safer sex barrier devices.
Barrier Device
Difficult or painful to use Easy to use Don’t want to use
n%n%n%
‘Penetrative’ Barriers
‘Male’ condom (participant) 17 53.13 10 31.25 5 15.63
‘Female’ condom (partner) 1 4.35 10 43.48 12 52.17
Finger cot on
penis/phallus/large clitoris
5 29.41 6 35.29 6 35.29
‘Receptive’ Barriers
‘Male’ condom (partner) 5 13.16 29 76.32 4 10.53
‘Female’ condom (participant) 9 39.13 3 13.04 11 47.83
Other barriers
Dental dam 4 14.29 12 42.86 12 42.86
PSYCHOLOGY & SEXUALITY 9

Discussion
The ndings reported in this paper usefully extend previous research (e.g. Jones et al., 2016;
Lundberg et al., 2021), by focusing on body congurations and medical interventions, experiences
of sex education, and experiences of sexual intimacy among people with intersex variations. In terms
of medical interventions, the experiences of participants, unfortunately, largely mirror previous
research documenting widespread consent violations by medical professionals and negative experi-
ences and outcomes (see Roen & Pasterski, 2014, for a summary). For example, in terms of hormone
replacement, it was notable that our data documented numerous reports of consent violations by
medical practitioners. Although rates of consent for both progesterone and hormone blockers were
relatively high, rates of consent for both oestrogen and testosterone only constituted two thirds of
those in receipt, and for growth hormones doctors failed to obtain consent from seven out of eight
participants. For both oestrogen and testosterone administration, consent was more likely to have
been obtained if participants were older at the time. It remains concerning that participants given
oestrogen and testosterone during childhood reported consent violations by medical practitioners.
Over two thirds of participants had experienced consent violations by surgeons as minors, with
many having more than one surgery, and many later needing corrective surgeries. Half of the
participants had their gonads removed, with most participants reporting consent violations by
surgeons. With clear implications for reproductive rights and bodily autonomy, such high rates of
non-consensual gonadectomy are concerning (Rowlands & Amy, 2018).
In terms of social pressures related to medical decisions, participants reported that the most
common source of pressure was medical practitioners. Participants noted that the push towards
surgery often appeared to relate to the fears of family members and doctors about societal
conformity, rather than reecting any genuine medical need. Conversely, some participants who
did want surgery or other medical interventions felt that their options were gatekept by medical
practitioners. Whilst ideally a person does not experience any pressure in making medical decisions,
it is notable that when pressure is experienced, it is overwhelmingly in favour of surgery, or put more
frankly, normalisation. It is therefore important for clinicians to recognise the coercion to have
surgery that many people with intersex variations experience from a variety of sources in their
lives and to make eorts to minimise these eects on the person’s decision making and help them
feel supported.
In terms of sex education, while a majority of participants received some teaching in this area
as minors, many participants reported guring it out on their own, and very few received sexual
health information from a health professional. While a health professional is not the only source
of sex education, or for many people the primary source, it is realistic to expect that many people
born with intersex variations will have regular contact with one or more healthcare professionals.
Given the lack of focus on intersex people in school sex education, it is thus important that
healthcare professionals are able to ll this gap when needed. For most participants, sex
education as minors was not relevant to their bodies. As adults, receiving sexual health informa-
tion from professionals was somewhat more common. While not ideal in terms of reecting their
actual bodies, for those who received education as adults it was at least somewhat more
inclusive. Even though over a third of participants reported ever having menstruated, education
about menstruation was poor.
In terms of physical intimacy, while the focus of the survey was on ‘penetrative sex’, some
participants chose to note that they enjoyed other forms of intimacy, which highlights the impor-
tance of focusing on intimacy for people with intersex variations beyond simply ‘penetration’. For
those who could engage in penetrating a partner, a signicant number had never done this, and
many who had said they found it painful or disliked it. By comparison many participants had
experienced and enjoyed anal intercourse. While slightly more people had tried vaginal/urogenital
sinus intercourse and enjoyed it, even more had tried it and found it painful or disliked it.
10 I. BERGER ET AL.

Finally in terms of sexual intimacy, barriers to the use of safer sex devices related to the t of
condoms, as well as misconceptions about the transmissibility of STIs. Participants provided useful
suggestions about how existing barrier methods could be altered to better suit the needs of people
with intersex variations. Yet despite complications related to safer sex devices, a majority of
participants reported that they had not previously had an STI.
Strengths and limitations
Due to being an international social media-based (albeit English-only) study rather than a clinical
sample, many people who would be excluded from other research by virtue of not being actively
engaged with a particular medical service have been included. A notable exception is work by
Callens et al. (2021), which found amongst Dutch adolescent intersex peer support group members
that there is a need for open-mindedness amongst clinicians about intersex variations; a need for
ongoing support and information related to diagnosis, treatment, and sexuality; and that there are
communication barriers amongst inter-disciplinary teams and with parents.
Although our sample included more racialised and culturally excluded populations than many
samples, a large proportion of participants were white or of European descent. Future surveys in
multiple languages could allow for greater exploration of whether country of residence dierentially
aected experiences. For example, some countries are more regressive in the inclusion of people
with intersex variations in terms of sex education or rights to not be subject to surgeries
(Pikramenou, 2019).
Legislation in some countries that have outlawed unnecessary genital and gonadal surgeries on
non-consenting children is relatively recent and remain inadequate (Carpenter, 2016, 2018). While
these laws are a step towards autonomy, they often do not address non-consensual hormonal
treatments that irreversibly alter a young person’s body. The common use of parental consent as
a substitute for children’s own consent and pressure by GPs, mental health professionals, and others
as documented in our study has yet to be addressed adequately in research, legislation, and policy.
Our study focused on those who are currently adults who have not been legally protected from
consent violations by medical practitioners. Whether such dierences impact experiences of sex
education requires further research and community consultation with people with intersex varia-
tions on their own behalf. Finally, as noted above, the survey focused primarily on so-called
‘penetrative sex’ in terms of physical intimacy.
By not separating those who actively sought hormone treatments and those who simply con-
sented to an oered treatment, our study may underestimate the proportion of people who have
experienced consent violations by medical practitioners. We also did not ask specically about
parental consent vs. minors’ assent. It would be important for future research to better understand
the experiences of individuals who have been operated on or given hormonal treatments through
parental (substitute) consent, coerced parental consent, and no consent at all.
Conclusion
The ndings reported in this paper document the widespread problem of consent violations, giving
weight to calls for the end to forced non-consensual surgeries and other medical treatments on
people with intersex variations (Thorn, 2014). This includes negative impacts on reproductive rights,
sexual pleasure, and the need for revision surgeries. Importantly, our ndings document various
forms of consent violations intersect with and facilitate each other, from forms of societal pressure to
scare tactics to the use of substitute consent by parents to obscure consent violations by medical
practitioners. These ndings also highlight that sex education for people with intersex variations is
often inadequate, suggesting the need for improved sex education content and delivery.
Importantly, previous research suggests that making the lives of people with intersex variations
‘talkable’ within sex education requires considerable emotion work on the part of such people
PSYCHOLOGY & SEXUALITY 11

(Lundberg et al., 2021). Other research also suggests a whole-school approach (that is, rather than
individual sexual health education, all students learn about intersex bodies) led by peer advocates is
needed to ensure the inclusion of students with intersex variations (Bromdal, Zavros-Orr, lisahunter,
Hand, & Hart, 2021). Such education should include information specic to the bodies of people with
intersex variations, recognising a diversity of experiences (i.e. involuntary or coerced surgeries
compared to those who have not had surgeries), and highlighting the specic forms of intimacy
engaged in, and sexual health needs, of people with intersex variations across a diverse range of
sexualities and genders. Our ndings suggest that future research and sex education should focus on
a diversity of intimate physical experiences beyond the limitations of heterosexist, patriarchal,
phallocentric, and androcentric norms. Through such education, people with intersex variations
may be more able to make autonomous decisions about their own bodies, to resist medicalised
normalisation and consent violations by medical professionals, and to enjoy a positive intimate
physical life and relationship with their bodies and their partners.
Notes
1. Intersex includes a wide range of variations that do not t 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 specically identify as
intersex, have a specic 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 signicant limitations.
Disclosure statement
We have no known conict of interest to disclose.
ORCID
Israel Berger http://orcid.org/0000-0001-6441-1296
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.
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