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Journal of Health Psychology
DOI: 10.1177/1359105305053431
2005; 10; 573J Health Psychol
Mary E. Boyle, Susan Smith and Lih-Mei Liao
Adult Genital Surgery for Intersex: A Solution to What Problem?
http://hpq.sagepub.com/cgi/content/abstract/10/4/573
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573
Adult Genital Surgery
for Intersex: A Solution
to What Problem?
MARY E. BOYLE
University of East London, UK
SUSAN SMITH
Tower Hamlets Primary Care Psychology & Counselling
Service, UK
LIH-MEI LIAO
University College, London, UK
MARY E. BOYLE is Professor of Clinical Psychology
and head of the Doctoral Degree in Clinical
Psychology at the University of East London.
SUSAN SMITH is Clinical Psychologist with Tower
Hamlets Primary Care Psychology & Counselling
Service.
LIH-MEI LIAO is Clinical Psychologist and Honorary
Senior Lecturer at the sub-Department of Clinical
Health Psychology, University College, London.
Journal of Health Psychology
Copyright  2005 SAGE Publications
London,Thousand Oaks and New Delhi,
www.sagepublications.com
Vol 10(4) 573­584
DOI: 10.1177/1359105305053431
Abstract
The desirability of routine
genital surgery for infants with
ambiguous genitalia is
increasingly debated. But there
is less discussion about intersex
adults who choose genital
surgery, despite evidence
suggesting that the results are
often unsatisfactory.This study
reports on how six women with
intersex conditions decided to
have feminizing genital surgery
and how they evaluated the
outcomes.The initial analysis
highlighted a chronological
transition from surgery as nondilemmatic
to surgery as a
serious dilemma; a version of
Foucauldian discourse analysis
was then used to place the
women's experiences in a
cultural context.The
implications for psychological
involvement in services for
women with intersex conditions
are discussed.
Keywords
decision making, intersex,
outcomes, surgery, women
ACKNOWLEDGEMENTS.We are grateful for the co-operation of the
AIS Support Group UK and of the women who took part in this study.
COMPETING INTERESTS: None declared.
ADDRESS. Correspondence should be directed to:
MARY E. BOYLE, Department of Psychology, University of East
London, Romford Road, London, E15 4LZ, UK.
[email: M.E.Boyle@uel.ac.uk]
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THE TERM `intersex' refers to a result of sexual
differentiation and development problems in
which a person's chromosomal, gonadal and/or
genital characteristics cannot be unambiguously
placed into our categories of male and female.
Two conditions implicated in intersex outcomes
are congenital adrenal hyperplasia (CAH) and
androgen insensitivity syndrome (AIS). In the
former, an enzyme abnormality results in a
female (XX) foetus producing substantial
amounts of androgens which masculinize the
external genitalia to varying degrees. In AIS, an
XY (male) foetus, with male gonads, produces
normal amounts of androgens but lacks receptors
to respond to them. The infant may have
`standard' female genitalia but without cervix,
womb or ovaries (so that the condition may not
be diagnosed until puberty) or may show
varying degrees of masculinization of the genitals,
depending on the degree of residual receptor
or hormonal activity. Estimates vary, but
Warne (1998) suggests that around 1/4500 liveborn
infants has a genital abnormality severe
enough to make the immediate assignment of
sex difficult.
It has been standard paediatric practice to
recommend sex assignment to male or female,
and then genital surgery for infants with
ambiguous genitalia, with potential sexual function
(erectile and penetrative potential of the
phallus) a major consideration in the case of
infants who might be sex-assigned as males, and
fertility (presence of womb and ovaries) in the
case of chromosal females (Creighton, 2001).
Because it is easier to construct a `functional'
vagina (i.e. capable of receiving a penis) than a
`functional' penis (i.e. capable of erection and
penetration), surgeons have generally recommended
female assignment where genital ambiguity
is pronounced (Wilson & Reiner, 1998).
Following sex assignment, parents have
traditionally been advised to raise the child
without ambiguity, which may mean that the
child (and adult) receives limited information
about their medical condition (Hegarty, 2000;
Kessler, 2000; Wilson & Reiner, 1998). Infant
surgery might be followed by further genital
surgery in childhood, adolescence or adulthood,
together with the administration of hormones to
align the child's physical appearance to the
assigned sex.
Very recently, these practices have been challenged
not least through the `coming of age' of
those who had such interventions as children
and, as adults, have spoken negatively of their
experiences. Professionals have focused critically
on reports of adults with intersex
conditions choosing to change gender later in
life (Meyer-Balhburg, Gruen, & New, 1996;
Reiner, 1996); on infant surgery; and on the fact
that raising a child `unambiguously' in line with
the assigned sex has often meant that information
has been withheld from children and
adults, raising serious ethical issues, not least
about consent to treatment (Fausto-Sterling,
2002; Kessler, 2000). It is also unlikely that children
are not aware that they are different, given
possibly evasive or incomplete answers to questions,
frequent hospital visits, possible absence
of menstruation, genital surgery and hormonal
treatments (Wilson & Reiner, 1998).
There is, too, a lack of information on the
outcomes of surgical sex assignment. Largescale
studies may remain impractical, but an
increasing number of smaller-scale studies and
case reports suggest that the outcomes of genital
surgery, even using newer techniques, are problematic
with repeat surgery usually needed after
puberty if intercourse is to take place. Women
also report scarring, loss of sexual sensation and
pain on intercourse (Creighton, 2001; May,
Boyle, & Grant, 1996; Minto, Liao, Woodhouse,
Ransley, & Creighton, in press).
As a result of these concerns, a number of
changes in the management of intersex have
been suggested. Although there are disagreements
on the desirability of sex assignment at
birth, there is general agreement among those
seeking changes in practice on the need to
involve parents fully in decision making; to
foster more open communication among
parents, children and professionals; to stop
viewing the birth of an infant with ambiguous
genitalia as an `emergency' (unless surgery is
medically necessary) and as far as possible to
delay genital and gonadal surgery until the
person can give informed consent (Creighton,
2001; Kipnis & Diamond, 1998).
Rationale for the present study
Criticism of traditional management of intersex
targets non-consensual genital surgery for infants
and children. But there has been little discussion
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of the issues raised when intersex adults choose
genital surgery (e.g. vaginal construction or
clitoral reduction), almost as if `consensual'
surgery removes the need for discussion. But the
study of these adult choices is important because
the cultural imperatives underlying infant sex
assignment, particularly the male­female
dichotomy and assumptions about what male and
female genitals are for, are also likely to impinge
on expert advice about adult surgery and on
decisions to accept it. In addition, studies that
show surgery outcomes to be problematic raise
questions about the information patients receive,
the decision-making process and criteria for
`success'.The present study is concerned with the
experiences of women with intersex conditions
who chose genital surgery as adults (and most
adult surgery is carried out on women).The study
focuses on decision making for surgery, the
experience of surgery itself and perceived
outcomes. More specific research questions will
be discussed in the analysis section.
Method
Participants
Participants were recruited from a support
group for women with intersex conditions
following circulation of research information on
the group's website and a brief presentation by
one of the authors (SS).We had hoped to recruit
women who had chosen not to have surgery,
although we knew this would be difficult
because of high rates of genital surgery. Of the
six participants only one had not had genital
surgery but had instead used vaginal dilators.We
will return later to issues raised by the recruitment
process.
The women had a variety of medical (intersex)
conditions, including complete androgen
insensitivity syndrome, although none of the
women had CAH. However because we were
interested in what the women had in common--
an intersex diagnosis and atypical genitalia--
and to protect their confidentiality, only group
information about non-diagnostic characteristic
is given in Table 1.1
Materials
Interview schedule A semi-structured interview
format was chosen to balance a structure
imposed by the researchers with the need to
allow participants to speak about what was
relevant to them. The schedule covered the
women's initial decision making about surgery,
their experience of surgery and the outcomes of
surgery, particularly in relation to selfperception,
forming intimate relationships and
sexual activities.
Procedure
When ethical approvals had been obtained,
women who expressed an interest in the
research were given an information sheet and
asked to sign a consent form; participants chose
whether to be interviewed in their homes (4) or
in a hospital psychology department (2). The
interviews (carried out by SS) were recorded
with participants' consent and took between 1.5
and two hours. The tapes were transcribed
verbatim and all potentially identifying information
removed from the transcript.
Analysis
Analytic methods
The interview transcripts were analysed using
two methods: interpretative phenomenological
analysis (IPA; Smith, 1996) and a version of
Foucauldian discourse analysis. Because these
methods may be seen as representing the
BOYLE ET AL.: ADULT GENITAL SURGERY FOR INTERSEX
575
Table 1. Participant characteristics
Non-diagnostic characteristics
Total 6
Age range 27­52
Age at surgery 19­43
Type of intervention
Clitoridectomy 1
Vaginaplasty 4
Dilators only 1
Number of operations
One 3 participants
Two 2 participants
Relationship status
Divorced 1
With a male partner 2 (includes divorced
participant)
Not in a relationship 4
Education
To degree level 6
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different epistemological traditions of realism
and constructionism (although in the case of
IPA, the distinction may be rather blurred; see
Willig, 2001), we will discuss why this dual
approach was chosen.
Our two major aims were to highlight
patterns in the reported experience of intersex
women who had chosen or not chosen genital
surgery, and to consider the meanings of these
experiences in a cultural and gendered context.
IPA appeared to be the method of choice for our
first aim, given its aim of conveying the quality
of an individual's experience and the meanings
they attach to it, while acknowledging that such
experiences always involve interpretation
(Smith, 1996). The strength of IPA may be its
insistence on remaining with participants'
accounts of their experiences and their meanings,
but as Yardley (1997a) points out, we have
no choice but to convey our experiences using
cultural concepts and language. Willig (2001)
similarly emphasizes the tensions between IPA's
assumption of the representational validity of
language and the possibility that language does
not constitute the means of expressing our
subjective experience but instead prescribes
what we can think and feel. Willig has further
argued that while IPA is able to generate rich
descriptions of participants' experiences, it has
not generally furthered our understanding of
why such experiences take place or of the social,
linguistic and material conditions that give rise
to, and continue to shape them.
A form of discourse analysis was chosen to
complement IPA because the latter's limitations
are precisely in those areas focused on by
discursive approaches which explicitly acknowledge
the socially and linguistically mediated
nature of human experience (Yardley, 1997a).
Stam has also argued for more attention to
discourse in health psychology,emphasizing that
`the activities [of those who provide and use biomedicine]
are constituted discursively and an
analysis of care-talk necessarily leads to a
deconstruction of traditional categories of
health care' (2000, p. 274).
A version of Foucauldian discourse analysis
was therefore used here because of its particular
concern with examining the relationships
among the cultural availability of discursive
resources,the social conditions which contribute
to and are shaped by discursive resources and
the ideological and power relations which are
reflected in and strengthened by the use of
particular discourses. Foucauldian discourse
analysis is also concerned with the potential
relationships between discursive practice and
the construction of individual desires, as well as
with `subject positions', i.e. possibilities for
feeling and acting, made available or closed
down by particular discourses.
The analytic approach adopted here has much
in common with material discursive psychology
(e.g. Ussher, 1997; Yardley, 1997b) and, like
Yardley (1997a), we would argue for the usefulness
of complementing a phenomenological
perspective with some form of discourse analysis.
The ways in which the two approaches were
combined will be discussed later.
Analysis--process
Although different types of qualitative analysis
ask different questions of and make different
assumptions about the data, there is much
procedural overlap because all analyses seek
regularities or themes in people's accounts of
events or experiences. We adopted here Taylor
and Bogdan's description of themes as units
obtained from patterns in, for example,`conversation
topics, vocabulary, recurring activities,
meanings [and] feelings' (1984, p. 131).This type
of analysis is central to IPA (Willig, 2001) and
we therefore initially followed procedures
outlined by Smith, Jarman and Osborn (1999)
but noted that these overlap with those for
discourse analysis (Parker, 1992). However, as
we were concerned with the chronology of the
women's experience in choosing, having and
living with the outcomes of surgery, this
sequence formed an overall framework for the
analysis. In order to facilitate the integration of
IPA and the Foucauldian discourse analysis,
further specific questions were then posed of the
thematically organized accounts of the women's
experiences.The two parts of the analysis will be
presented separately.
Results and discussion: IPA2
The superordinate theme identified was that of
the transition from the relative absence to the
marked presence of a dilemma. Thus, the three
chronological periods--before surgery, the
experience of surgery and post-surgery--were
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characterized by a transition from experiencing
surgery as largely non-dilemmatic to experiencing
it as a serious dilemma. We are using
`dilemma' here in the sense discussed by Billig
et al., who have argued that `[t]o experience a
dilemma is to live out an opposition, so that one
is divided upon it in the failure to achieve a resolution'
(1988, p. 91).The transition process in the
women's accounts, from relatively non-dilemmatic
to dilemmatic thinking, is described
below.
Before surgery: the absence of
dilemma
The relative absence of dilemmatic thinking, or
self-argumentation, in the women's experience
of choosing genital surgery can be understood in
terms of three constituent themes which characterized
their accounts of this process:`conferring
normality'; `conferring sexual and relationship
entitlement'; and `doctor knows best'.
Conferring normality The women spoke of
their feelings of being `outsiders', even of potentially
being seen as `monsters' or `freaks', who
had become skilled at concealing the physical
and emotional effects of their medical
condition. Surgery was then seen as a means of
conferring `insider' status or normality:
I felt as though I was on the outside, if you
like. Maybe they would talk about the things
they did and often I'd give it the big, old, `Oh
yea, you know, me too.' (P6)
I had also expected that the surgery would
eliminate the [ ] I always hoped that the
strong [ ] the desire for . . . a perfect female
body which [ ] I'm sure a lot of women
(laughs) have, I-I mean all our advertising is
certainly geared towards it. And I expected
that that would go away. (P3)
I expected that I would have an ordinary
heterosexual relationship. That was, that was
my expectation. (P2)
But as well as feeling normal and having `ordinary'
heterosexual relationships, the women
also hoped that surgery would remove the need
for questions and explanations:
. . . to find yourself in that intimate situation
with [ ] a male partner [ ] and for them [ ] to
[ ] make some comment about the fact that
you didn't have . . . you know, a vagina . . . it
would open up this whole can of worms and
you'd have to kind of explain things . . . I just
couldn't handle it. (P5)
Well, if, if a guy went to [ ] to have full sex with
me and he found out I was too short, there
would be questions, I would have to explain
something. I didn't even know [ ] myself [ ]
what was wrong, you know. (P7)
These comments emphasize that it is not simply
that the women feared having to explain their
condition, but that they might not know what to
say particularly as many had been given incomplete
or misleading or no explanations when
they were growing up.
Conferring sexual and relationship entitlement
This second constituent theme was
closely related to the previous theme of conferring
normality. The women talked not only of
feeling like outsiders, but of feeling unentitled to
`normal' relationships:
And if you've lived your whole life knowing
that [ ] you know, that you--that the vagina's,
like, one centimetre or whatever, um [ ] you
know, you just, you just get this sort of fixation
in your mind that you're not [ ] entitled, really,
to have that sort of relationship. (P5)
This entitlement involved the assumption that a
vagina is essential to heterosexual relationships:
`I would think it's really nice to be able to have
a vagina before, or even, or just, just to have a
vagina and then you would have a chance to
have an intimate, committed relationship' (P7).
The taken-for-granted connection between
vaginas and relationships was also evident in
doctors' reported consultations with the women:
`when the time comes you have surgery' and
similar phrases implied that surgery would be
necessary when the woman wanted to have an
(assumed heterosexual) relationship.The idea of
a vagina as a pre-condition of this was also
strongly reinforced by the women's assumptions
that men would `scream'; `freak out'; `run off' or
`totally flip' when they discovered that the
woman did not have a normal vagina.
Surgery thus had the strong appeal of a
procedure which would confer normal femininity,
rendering the women acceptable both to
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themselves and future male sexual partners; it
was seen as a means of escape from a situation
where concerns about the inevitability of
`discovery' led all of the women either to end
relationships with men at a very early stage or
not to form them at all. Notably, the woman who
chose not to have surgery (but later used dilators)
did so partly because at that time she could
not imagine `finding anyone'.
Doctor knows best The third theme that
contributed to the relatively non-dilemmatic
nature of choosing surgery was `doctor knows
best'.A striking aspect of the women's accounts
was the extent to which they recalled genital
surgery being presented matter of factly, as
generally unproblematic and desirable:
Well, he did explain that it, you know, it might
make [ ] things look a little bit different . . . I
did actually ask, I said, are there not any
other options that could be tried? And he
said that, you know, he thought this was the
best one. (P5)
He said, these are the other alternatives, he
said you can dilate, but you do it for months
and months and--you start off tiny, it's a long
drawn-out process, um, the way [ ] the way he
described it at the time, left the impression to
me that [ ] that wasn't the way to do it,
that wasn't, that wasn't the way he'd recommend.
(P7)
The combination of medical authority, the
straightforward presentation of surgery and the
consultation setting made it difficult to engage
in detailed discussion of what surgery might or
might not achieve:
I think part of it could have been, well, this
doctor knows what to do best, as my doctor
[ ]. I was like, oh, you know best, you're the
professional here, I'll, and I'll bow to your
better judgement. (P6)
Whenever I used to see the doctor, there
would always be at least eight white coats
sitting behind me, you know, scribbling down
notes, and that's not really a time that you can
then sit there and say, `is it going to affect my
orgasms?' because I could just imagine, you
know, all the eyes glancing at one another and
you, you just don't do it. (P5)
But the subjugation of potentially dilemmatic
aspects of surgery in the medical encounter was
strongly reinforced by the women's own hopes
for surgery, as we discussed earlier:
It's, it's, I'm sure they explained those things
to me, it's just that I was [ ] s-o desperate at
the time that explanations just went right on
by. (P3)
You want some instant resolution [ ] so you're
kind of prepared to put up with [ ] the sort of
[ ] side-effects, because you think, you think
the overwhelming benefits are going to be [ ]
overwhelming [laughs]. (P5)
For both women and doctors, then, surgery
appears as the taken-for-granted means of
correcting what is held to be the obstacle (i.e.
non-typical genitalia) to an active (hetero)
sexual life or, as one woman put it, `something
you've got to do' (P7).
The experience of surgery: an
emerging dilemma
Two themes were identified in women's
accounts of the process of surgery, and of its
immediate after-effects:`just another fanny' and
`the imperfect results'.
Just another fanny This theme represents a
pivotal point in tracing the emergence of dilemmatic
thinking in the women's accounts because
the experience of surgery marked a sharp divergence
between the women's experience of
surgery as a momentous event, and the routines
of medical management:
I was seeing a doctor that was going to do,
you know, examine me in a way that perhaps
I'd been examined half a dozen times before,
and, to me, it was a big deal, whereas to him,
it was just another [ ] fanny [laughs], you
know . . . and I really did feel as though, you
know, we were all lined up like a cattle
market.You know, they just come and have a
quick look and a prod and a poke, and then
go off again. (P6)
He didn't even examine me, he didn't, he just
said, yea, I'll see you on the operating table
. . . so, I just [ ] don't worry about it, I don't
need to examine you now. (P7)
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You just went and got it done, and you got on
with it, and that was it [ ] go away. (P2)
It was perhaps at this point that the women
began to see themselves more as passive recipients
of medical management than as people who
had made an active choice:
I just signed the consent form. I didn't have
any information on, really, what he was going
to do. How he was going to do it. I just sort of
signed my name and that was it. [ ] I let him
do what he wanted. (P2)
So I was like, yea, OK, if that's what needs to
be done, that's what needs to be done. Um [ ]
and then obviously I signed the consent form
. . . (P6)
The imperfect results of surgery This theme
bridges the immediate post-operative and the
long-term outcomes of surgery and will be elaborated
further in the next section. It was clear,
however, that the short-term outcomes were
often very different from those hoped for. One
woman suffered severe post-operative infection;
three experienced stenosis (closure) of the
newly constructed vagina: `. . . after the first
operation, because that closed up [ ] really
quickly . . . it just closed up so [ ] quickly. So that
was a complete waste of time, really' (P5).
Another woman (P6) described the discrepancy
between her doctor's description of the
procedure as `a bit painful . . . it's only the
discomfort while we're stretching you' and the
`excruciating pain' she experienced post-operatively.
She described the procedures as `acts of
violation'; other women described them as
`disfiguring' and `stigmatizing', particularly
ironic comments given the power previously
invested in surgery to de-stigmatize.
Post-surgery: surgery as dilemma
Far from surgery being `the end of it' as one
woman had hoped, its dilemmatic aspects
became increasingly salient.Two themes particularly
reflect surgery's apparent failure to resolve
the problems for which it was sought: surgery is
not experienced as conferring `normality' or
satisfactory intimate relationships.
The women realized that post-operative
procedures would be a continual reminder of
difference:
Having to have [ ] having to go to a doctor
every year for a physical, rather than [ ] the
assumption that, OK, when the surgery's over
that's all you get for a lifetime, you know? [ ]
And I didn't know that I'd . . . have to dilate.
(P3)
`Having to dilate'--often necessary to keep the
constructed vagina open--was a process which
some women found unpleasant (one described
it as `a nightmare'), as well as a reminder of
difference. It was not clear whether the women
had been told beforehand that regular dilation
might be necessary; some claimed not to have
known, others that they might not have `heard'
the information, so great was their desire for
surgery. In either case, dilation was problematic:
I haven't been dilating, it's just painful . . .The
first year I was very good at it [ ] but then,after
that [ ] um, I think maybe, I got more sick
about doing it . . . I just worry that I'll progressively
go worse and worse and eventually
have to have an[other] operation. (P7)
Nor did surgery make it easy to form intimate
relationships; on the contrary, it made visible
what had previously been masked:
I felt . . . like [ ] I hadn't learned all the social
sort of skills that were needed to [ ] you know
to-to establish a relationship and that maybe
that was the main problem, and having a
vagina wouldn't really help . . . there's more
going on than just vaginal length. (P5)
But then I still, even though that [ ] part of the
problem had been taken away,that,you know,
penetrative sex could be possible,I still had all
the other hang-ups, the shit that I was still
carrying around. (P6)
All of the women still had difficulty in starting
or continuing any (potentially) sexual relationship.
These difficulties centred round two major
pre-occupations: does it work? and, will I pass?
The women's concern over whether their
altered genitals `worked' meant that sexual
encounters were seen as a test rather than an
opportunity for pleasure:
Initially,you know,it probably took four years,
three to four years, post-operatively, before I
was really able to put it to the test. (P6)
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It's like, everything is all a test you know, it's
[ ] like with this second guy, I regarded the
whole thing as, like, a test, you know, I was
testing it all out sort of thing, to see if part A
fitted into part B and stuff like that. (P5)
[Intercourse] was this [ ] big [ ] kind of thing
that I had to cross [ ] that I was working to
understand [ ] but it didn't feel earth-shattering
to be able to do that to myself [use dilators].
I still thought that the big [ ] test will be
intercourse. (P4)
And, because of the need to dilate to avoid
closure of the vagina, for some women, this `test'
could become a regular part of their sexual
relations:
As regards functioning [ ] um [ ] I-I've only
tried it out on someone four or five times, but
even then, when I did try it [ ] I think I was just
too conscious about [ ] um, is it long enough,
and have I dilated enough in the last two days
to make it, make it the right size? (P7)
But as well as needing to `test out' the size of
their vaginas against the size of their partner's
penis, the women faced the continuing threat of
being `found out', in spite of the fact that one of
the reasons for having surgery had been to
escape this threat:
The whole scenario [sexual intimacy] is so
filled, filled with anxiety [ ] that, you know, I
just can't relax [ ] because the whole, the
whole thing has become associated with
[pause] you know,being wrong or being found
to be wrong, uh, you know, and not being
adequately equipped . . . (P5)
I think a lot of the time I've been [ ] afraid to
open up too much, or let them, let them see,
or even feel, too much of my body in case they
ask me about my scarring. (P7)
Even the woman who had had clitoral reduction
and no vaginal surgery was not able to anticipate
satisfactory sexual relationships because
she had, so to speak, been found out by herself:
`Like I said, people say they would--people
wouldn't know, but I mean, I know [ ] and to me
that's, that's enough. [ ] That is a stumbling
block' (P2).
What these women know, of course, is not
simply that they have had genital surgery, but
the reason for it--that they have an intersex
condition whose implications in terms of selfperception
and anticipated perception by others
cannot, it seems, be negated by attempting to
correct the most visible outward sign. However,
the dilemma faced by the women after genital
alteration was not simply that it had fulfilled few
of the hopes invested in it, but that there seemed
to be no alternative way of solving the problems
for which it had been sought. Some of the
women wondered if the outcomes would have
been different if they had used only dilators
rather than having surgery, with their dilemma
being particularly strikingly conveyed by P5,
who had had two vaginoplasties, choosing the
second procedure because of its assumed technical
superiority, but then asking herself
whether it would not have been better just to
have used dilators, while also saying that `there's
more going on than just vaginal length. It's like
I haven't learned,sort of,how to relate to people
properly or, uh, how to sustain a relationship.'
But since the women had attributed most of
their relationship difficulties to their non-typical
genitalia, then the only possible solution
appeared to be to standardize them, a solution
which did not seem to work. For some of the
women, meeting `the right man' was seen as a
way out of this seemingly insoluble problem;
this idea was also present in May et al.'s (1996)
study of women with CAH.But the fear of being
`found out' made it difficult to see how this
meeting could take place.
We have used Billig et al.'s (1988) approach to
everyday thinking as dilemmatic, as an `analytic
thread' (Taylor & Bogdan, 1984) linking the
themes which characterized the women's
accounts of choosing and living with genital
alteration. We have suggested that for these
women, the process involved a transition from
relatively non-dilemmatic to explicitly dilemmatic
thinking. It seemed to be at the point of
surgery itself that dilemmas began to be explicitly
formulated, while further, post-operative
dilemmas were organized around the knowledge
that a complete resolution of the previously
defined difficulties did not occur.
Post-operatively, some of the problems of
bearing the condition became apparent, no
longer obscured by the authoritative appeal of a
mechanical solution.
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A discursive approach
We argued earlier that phenomenological
approaches were less able to account for why
people's experiences took the form they did or
why particular meanings were assigned to them.
We also argued, with Stam (2000) and Yardley
(1997a), for the relevance of a discursive
approach that acknowledges both the material
and the socially constructed nature of the body
and experiences associated with it. In the next
sections, we therefore present a brief analysis of
the women's accounts from this perspective.The
analysis focuses on key questions posed by
Foucault (1972): what makes particular desires,
or ways of talking about things, seem reasonable?
How do they come to be taken for
granted? The questions emphasize the point that
any particular way of talking or desiring depends
for its intelligibility on often unarticulated
assumptions which reflect dominant (cultural)
forms of making sense of the world in any given
period (Sawicki, 1991). This relates to Billig's
(1991) suggestion that our private thoughts have
the structure of public arguments. Thus, if our
personal thinking about an issue is relatively
non-argumentative, we might expect an equal
lack of public argument on the issue, or takenfor-granted
assumptions about `the way things
are'. We will analyse here three aspects of the
women's experience in order to highlight these
points: (1) choosing potentially harmful genital
surgery or dilation when it was unnecessary for
either reproduction (none of the women could
become pregnant) or sexual pleasure; (2) the
relative lack of dilemmatic thinking in choosing
surgery or dilation;and (3) the complete absence
of talk of enhanced sexual pleasure or enjoyment
as an explicit goal or outcome.The first two
of these will be discussed together.
Choosing surgery and choice as
non-dilemmatic
The women's choice of surgery (or dilation) and
its relatively non-dilemmatic nature, can be at
least partly understood with reference to two
powerful, and powerfully related, discursive
constructions: two fixed sexes and the linguistic
and conceptual conflation of sex with intercourse.
Two fixed sexes The idea that there exist two
sexes, one to each body, is so taken for granted
by us, so much not a subject of day-to-day argumentation,
that it is extremely difficult to see the
idea as constructed and contestable, rather than
natural and immutable. Dreger (1998) and
Foucault (1979) have focused on the late 19th
and early 20th centuries--a time when the social
order was especially threatened by war and by
women's demands for the vote and a greater
role in public life--as the beginning of the
modern preoccupation with demarcating two
sexes, biologically, socially and psychologically;
at this time, the `perverse' adult--the homosexual
and the hermaphrodite--was a particular
object of scrutiny given their obvious capacity to
threaten a dichotomous division of the sexes.
Dreger (1998) and Kessler and McKenna (1978)
have argued that the historical importance
attributed to outward and easily checked
appearance, and the later development of surgical
techniques for altering genitals, contributed
to a shift during the 20th century from gonads
to genitals as the signifier of gender and to the
modern centrality of genital surgery in the
demarcation of two sexes. Thus when the
women in this study talk about being a freak or
state bluntly `you are a freak', they are expressing
the fact that culturally they are not supposed
to exist.The emphasis they place on the psychologically
transformative power of genital
surgery to make them feel `more feminine' and
a `normal female' is therefore not surprising.
The conflation of sex with intercourse The
women, however, did not choose surgery or dilation
only to feel more womanly but also to
enable them to act like women, to `have sexual
relationships' with men. That this should seem
to require surgical or manual alteration of the
genitals in women already very capable of
sexual arousal and orgasm is made at least
partly comprehensible by the strong discursive
conflation of (hetero) sex and intercourse
(Holland,Ramazanog˘lu,Scott,Sharp,&Thompson,
1990; Sanders & Reinisch, 1999), a conflation
evident in the women's accounts and
reinforced by medical encounters in which it
seemed to be taken for granted that the women
would have surgery in order to `have sexual
relationships'.
The desire for surgery or dilation as the means
to `have sex' was, however, also dependent on
the meanings of intercourse, with penetration
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allowing you to `be a woman' or being `a yardstick
of a womanly status'. Such meanings are
cultural rather than purely personal. A further
part of the linguistic, psychological and social
importance placed on penis­vagina intercourse,
however,depends on its power to signify heterosexuality;
as some of the women in this study
were well aware,surgical or manual alteration of
the genitals in preparation for `sex' implied a
rejection of homosexuality.
The absence of pleasure talk
We noted earlier that the women did not talk of
enhanced sexual enjoyment as a goal or
outcome of genital surgery or dilation. On the
contrary, there was explicit acknowledgement of
not enjoying intercourse after surgery: `To be
honest, it was just like a dead weight [ ] inside,
which sounds strange, but it was [ ] I, I don't
know, I didn't know how [ ] I could get enjoyment
from it' (P7). This lack of talk about
enhanced sexual pleasure as a goal is also
evident in surgical outcome studies (e.g. Azziz,
Jones, & Rock, 1990; Azziz, Mulaikal, Migeon,
Jones, & Rock, 1986) whose criteria for `success'
or `normal sexual function' or `fully satisfactory
intercourse' do not include sexual enjoyment,
but simply the woman's ability to accommodate
a penis without pain or discomfort. Similarly,
intercourse (like dilators) was presented to
some of the women in this study as part of postoperative
maintenance, as a way of keeping the
vagina open, as one woman put it, `for the
biggest size [of penis]' (P7).
The de-emphasis of women's sexual pleasure
might be explained by the potentially more
important psychological meanings of possessing
a vagina and having intercourse, which were
discussed earlier. But the striking lack of
pleasure talk in both the literature and from the
women themselves, also needs to be understood
in a cultural context which has generally privileged
male sexual pleasure over female
(Hollway, 1989; Maxwell & Boyle, 1995;
Ramazanog˘lu & Holland, 1993).And in Azziz et
al.'s study, surgery was considered a `partial
success' even if the woman experienced discomfort
during intercourse, provided this `did not
fully impair penetration' (1990, p. 24). Not
surprisingly, then, the women in this study often
conveyed the impression that although they
expected to gain psychologically from surgery
or dilation, these procedures were also undertaken
for imaginary future male partners who, it
was assumed, would not accept a relationship
which could not include vaginal intercourse.
Discussion
Methodological issues
All of the participants were recruited from a
support group for women with intersex
conditions; this may have produced a sample
with more similar (and possibly negative)
experiences than would have been the case had
more varied recruitment methods been used.
The sample was also small and none of the
women had CAH. There are, however, several
reasons for assuming that these factors may not
significantly compromise the study's validity.
First, we made no attempt to suggest an interest
in negative experiences of surgery. Second, the
women all spoke unprompted of differences of
views and experiences within the group. Third,
aspects of the women's experiences are corroborated
by the most recent data on sexual function
collected by medical practitioners (Minto,
Liao, Conway, & Creighton, in press; Minto et
al., in press). Lastly, the women's experiences
not only made sense in terms of well-researched
constructions of sexuality and gender, but their
accounts of sexual and relationship problems
following surgery were very similar to those
reported by May et al. (1996) for women with
CAH, all of whom had been recruited from
medical records for a broader study of quality of
life.
It is nevertheless important to extend
research to larger samples. Barthold and Aaronson
(2002), noting the sparse outcome data on
genital surgery, have also called for research
using `objective criteria' to evaluate outcome.
But it is important to be very cautious about
`objectivity', given the implicit assumptions that
may inform criteria used for `success'.We would
also argue for the routine inclusion of methods
that allow women to give their own accounts of
outcomes.
The participants had also had surgery some
years ago (from the mid-1970s to the mid-1990s)
and while this allows the evaluation of longerterm
outcomes, it might be argued that
procedures have improved since then. Wilson
and Reiner (1998) caution strongly against this
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argument, given the lack of systematic evaluation
of newer techniques and the lack of
evidence that their results are superior (see also
Creighton, 2001; Kessler, 2002). We were also
unable to detect any clear differences in the
accounts in terms of when the women had had
surgery.
Clinical implications
The study has highlighted some of the`dominant
ways of making sense of the world' (Sawicki,
1991, p. 104), which appear to shape both the
desire for genital surgery and its medical
provision. These include the dichotomous
construction of sex; the conflation of genitals
and gender; and the conflation of heterosexual
relationships with intercourse. When the
psychological and behavioural ideals implied by
these constructions cannot be achieved by
material alterations to the genitals, then a
serious dilemma ensues, whose only solution
appears to be more of the same (further surgery
or dilation) or a fantasy partner. Yet neither of
these solutions arguably provides a basis for
constructive psychological input either to
women with intersex conditions or to the
medical professionals involved in their care.
We would like to suggest several changes to
practice, focusing first on the issue of informed
consent. Clinical teams would need to
(re-)consider what information to give women
and how best to explore their understanding of
its implications, as well as avoiding the usual
presupposition that a vagina or clitoris of certain
dimensions are pre-conditions of `sex'. The
possibility that surgery might damage the very
thing that it tries to fix--appearance and
`normal' sexual function--must be entertained,
as should the fact that surgery may not remove
the possibility of having to give explanations to
partners or bring about an ideal relationship.
Second, in direct work with women, a major
aim would be to encourage more `self-argumentation'
at an early point rather than seeing
surgery as the inevitable and only `solution'. It is
possible to increase personal control of social
interaction in general, including disclosure situations,
and to explore alternative avenues of
satisfaction--sexual and non-sexual (Liao, in
press). For women who do choose surgery or
dilation, the priorities may be the management
of their limitations and the development of
sexual relationships which focus on mutual
pleasure rather than the `testing' of surgically or
mechanically altered genitals.
It is, finally, worth noting that the social, familial
and medical secrecy which has surrounded
intersex, together with the pursuit of surgical
and mechanical solutions, has resulted in
doctors, patients and their families having little
vocabulary with which to discuss the condition
and the experience of living with it beyond that
of its most visible sign--the non-typical genitalia.
It is no surprise, then, that the `solution' of
genital alteration should be so readily offered
and accepted. Recent calls for more open
discussion of alternatives to infant and child
surgery, as well as a greater emphasis on psychological
aspects of intersex, may help provide a
future context in which it is possible to talk--
and think--about intersex and its management
with richer vocabularies and conceptual frameworks
than has traditionally been the case.
Notes
1. Participants are numbered 2­7. No quotations are
provided from P1, who volunteered for the
research because she wished to talk about her
experiences of intersex but surgery was not an
issue for her or her doctors.
2. Key to transcript notation: [ ] = noticeable pause
in speech; . . . . = text omitted; [abc] = text inserted
by authors for clarification; abc = said with
emphasis.
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