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Gender Identity and Coping in Female 46, XY Adults With Androgen
Biosynthesis Deficiency (Intersexuality/DSD)
Katinka Schweizer, Franziska Brunner, Karsten Schu¨tzmann, Verena Scho¨nbucher,
and Hertha Richter-Appelt
University Medical Center Hamburg-Eppendorf
Individuals living with an intersex condition have not received much attention in counseling psychology,
although a high need for psychosocial care is obvious. Using a mixed-methods multiple case study with
qualitative and quantitative data, the authors explore coping and gender experiences in seven 46, XY
intersexual persons with deficiencies of androgen biosynthesis. These were assigned female at birth. At
puberty, the participants experienced unexpected physical virilization due to 5alpha-reductase-2 (n⫽3)
and 17beta-hydroxysteroid dehydrogenase-3 deficiency (n⫽4). All 7 received medical treatment (e.g.,
gonadal removal, genital surgery) to stop virilization and maintain the primarily assigned female sex and
gender. The cases illustrate high adjustment challenges caused by the condition itself and the medical
treatment experienced. None changed to male during adolescence as reported in previous studies. Highly
variable patterns of gender identification become visible with subjectivities that do not only represent a
binary gender model. Adult gender identity outcome of the participants is characterized by an increased
uncertainty of gender identity, high male and low female gender identity. Implications for clinical
management, particularly psychological counseling, are drawn.
Keywords: gender identity, coping, intersexuality, disorders of sex development (DSD), 5alpha-
reductase-2 deficiency (5alpha-RD-2), 17-beta-hydroxysteroid dehydrogenase-3 deficiency (17beta-
HSD-3), androgen biosynthesis deficiency
Intersexuality is an umbrella term for various forms of atypical
somatosexual development. Also termed disorders of sex develop-
ment (DSD), they comprise different congenital conditions in
which the development of chromosomal, gonadal, or anatomical
sex is atypical (Hughes, Houk, Ahmed, Lee, & LWPES/ESPE
Consensus Group, 2006). Whereas the old medical term
pseudohermaphroditism has been largely replaced, some scholars
have proposed the use of less disorder-focused terms. Alternative
suggestions include variations,differences,ordivergences of sex
development (e.g., Diamond & Beh, 2008; Reis, 2007; Richter-
Appelt, 2007). In some cases, intersexuality is detected due to
ambiguous genitalia at birth; in others, it becomes obvious at the
time of puberty. Incidence of DSD has been estimated at 1 in 4,500
births (e.g., Hughes et al., 2006; Thyen, Lanz, Holterhus, & Hiort,
2006). However, intersexuals still seem to be a hidden population
even in the professional fields working with minority groups, such
as counseling psychology.
There are several reasons why counseling psychology should
pay more attention to individuals with an atypical sex develop-
ment. Discovering an intersex condition has been described as a
highly challenging situation, both in terms of group norms and
individual experience. The existence of ambiguous sex character-
istics in a person strongly calls into question the societal manifes-
tations of the gender binary, according to which a person has to be
either male or female. This manifests itself in terminology and in
the ways of “correcting” sexual ambiguity and “sex errors”
(Money, 1994b). Furthermore, persons with an intersex condition
can face manifold psychological challenges like coping with
intersex-specfic experiences such as atypical somatosexual and
psychosexual development, medical interventions, and the re-
peated experience of being different from other boys and girls,
men and women (e.g., Cohen-Kettenis & Pfa¨fflin, 2003; Diamond,
1997; Zucker, 1999). Psychosocial challenges can further arise
through emotional reactions from parents and family members,
such as insecurity, anxiety and shame, sometimes resulting in
silence and taboo (e.g., Kessler, 1998; Lev, 2006; Preves, 2003).
Impaired quality of life and high levels of psychological distress in
adult persons with different forms of intersexuality have been
Katinka Schweizer, Franziska Brunner, Karsten Schu¨tzmann, Verena
Scho¨nbucher, and Hertha Richter-Appelt, Department of Sex Research and
Forensic Psychiatry, University Medical Center Hamburg-Eppendorf,
Hamburg, Germany.
This study was supported by German Research Foundation Grant Ri
558/2-2, the Hamburg Foundation for Science and Culture, and the Uni-
versity Medical Center Hamburg-Eppendorf. We thank all those who made
this research possible. We are most grateful to the participants of this study.
We highly appreciate their willingness to share their experiences. We also
thank the collaborating medical and psychosocial staffs and colleagues
from clinics and medical practices all over Germany, especially Olaf Hiort
(Lu¨beck) and Paul-Martin Holterhus (Kiel) and their teams for their sup-
port with medical questions. We are grateful to our present and former
colleagues and student assistants, particularly to Benjamin Gedrose and
Lisa Brinkmann and to Ingrid Lansford, Monica Blotevogel, and Faith
Blundon-Jakobsen for assisting with language competence.
Correspondence concerning this article should be addressed to Hertha
Richter-Appelt, Center for Psychosocial Medicine, University Hospital
Hamburg-Eppendorf, Martinistraße 52, D-20246 Hamburg, Germany
E-mail: hrichter@uke.uni-hamburg.de
Journal of Counseling Psychology © 2009 American Psychological Association
2009, Vol. 56, No. 1, 189–201 0022-0167/09/$12.00 DOI: 10.1037/a0013575
189
reported (e.g., Johannsen, Ripa, Mortensen, & Main, 2006; Scho¨n-
bucher, Schweizer, & Richter-Appelt, 2008; Schu¨tzmann, Brink-
mann, Schacht, & Richter-Appelt, 2007). On the basis of these
findings, researchers previously argued that psychological coun-
seling should be available to all patients diagnosed with DSD and
their families and should be integrated in the multidisciplinary
clinical management of DSD (e.g., Baker, 1981; Diamond, 1997;
Hughes et al., 2006; Hughes, Nihoul-Fe´ke´te´, Thomas, & Cohen-
Kettenis, 2007; Liao, 2003; Meyer-Bahlburg, 1993; Money,
1994b). Despite the increasing call for psychosocial care in this
population, training curricula and guidelines for counselors work-
ing with intersexual persons are scarce (e.g., Lev, 2004). Coun-
seling psychology is the discipline predestined to respond to this
scarcity and to the findings and requests described, and should
develop, apply, and promote guidelines for well-grounded and
client-oriented counseling services needed.
In this article, we aim to provide insight into gender identity and
the specific coping experiences of persons with intersex conditions
caused by defects of androgen biosynthesis. In order to provide a
better understanding of these conditions and the issues relevant to
the research focus, the introduction is divided into four sections.
The first part introduces the specific intersex conditions dealt with
in the present article. In the second section, clinical management
policies and procedures regarding medical treatment are outlined.
Thirdy, relevant aspects of the concept of gender identity are
presented. Finally, the research questions and the rationale for
using a mixed-method design are explicated.
Androgen Biosynthesis Deficiencies
During prenatal human life, a chromosomal 46,XY karyotype
typically triggers male sex development. However, sex differenti-
ation is a complex process, depending on the functioning of several
biological mechanisms. Irregularities can occur at different levels
(for an overview, see Vilain, 2006). One mechanism that can be
disturbed is prenatal androgen biosynthesis in persons with a
“normal” 46,XY genetic constitution. Due to an enzyme defi-
ciency, virilization is incomplete, resulting in an extreme under-
masculinization of external genitalia. At birth, genitalia are
female-appearing, sometimes enlarged.
In the cases presented, disturbed androgen biosynthesis is caused
by 17beta-hydroxysteroid dehydrogenase-3 (17-HSD-3) or 5alpha-
reductase-2 (5␣-RD-2) deficiency.
1
Both conditions are quite rare,
and prevalence appears to vary between different geographical re-
gions. Incidence of 17-HSD-3 deficiency was estimated at nearly 1
in 150,000 births. 5␣-RD-2 deficiency was reported to be less fre-
quent (Manson & Carr, 2003; Thyen et al., 2006); others stated it
showed a higher prevalence (Bosinski, 2005). A recent international
review by Cohen-Kettenis (2005) encompassed 140 female-raised
persons with 5␣-RD-2 deficiency and 56 with 17-HSD-3 deficiency.
In her review, the largest case studies on 5␣-RD-2 defects were
conducted in the Dominican Republic (n⫽33; Imperato-McGinley,
Peterson, Gautier, & Sturla, 1979) and Brazil (n⫽26; Mendonca et
al., 2003). For 17-HSD-3 deficiency, these studies were conducted
in Israel (n⫽15; Rosler, Silverstein, & Abeliovich, 1996) and Brazil
(n⫽10; Mendonca et al., 2000). Studies on both conditions from
European countries showed sample sizes ranging from one to four
(e.g., Aguilar-Diosdado, Gavila´n-Villarejo, Escobar-Jime´nez, Beltra´n,
& Grio´n, 1995; Boudon et al., 1995; Leinonen, Dunkel, Perheentupa,
& Vihko, 1983; Wieacker & Von Mu¨hlendahl, 1996). Knowledge
about the genetic basis is continuously growing. (Both conditions,
5␣-RD-2 and 17-HSD-3 deficiencies, are autosomal recessive in-
herited enzyme deficiencies caused by deletions or mutations in the
genes encoding the isozymes involved. It was reported that more than
45 mutations have been found, accounting for the 5␣-RD-2 defi-
ciency; Hiort et al., 2002; Mazen, Hafez, Mamdouh, Sultan, & Lum-
broso, 2003.) With respect to 17-HSD-3 deficiency, 20 allelic vari-
ants of the underlying gene have been described until now (Manson
& Carr, 2003).
Besides the discrepancy between phenotypic and genetic sex
(46, XY karyotype), internal sexual structures are unambiguously
male in both conditions (Sinnecker, 2005). The most striking char-
acteristic of this group, however, is the occurrence of a male pubertal
development due to a functioning androgen production via alterna-
tive pathways. Masculinization of primary and secondary sex
characteristics includes growth of phallus, scrotum, and facial hair,
an increase of muscle mass, deepening of voice, and testicular
descent in some. It is due to these mostly unexpected changes that
the conditions have been coined as “pubertal change syndromes”
(Meyer-Bahlburg, 2004).
Clinical Management and Medical Practice
Clinical management of these conditions involves two critical
areas of decision making: these are deciding on gender assignment
and on the question of whether and when to medically intervene.
There is broad consensus that gender assignment should be based
on an early, accurate diagnosis (Hughes et al., 2006). For infants
diagnosed with 5␣-RD-2 or 17-HSD-3 deficiencies, a male as-
signment should at least be considered (Diamond & Sigmundson,
1997; Hughes et al., 2006). It has further been requested that
gender change and reassignment should be made possible during
all phases (Meyer-Bahlburg, 2004). In many of the cases reported,
the conditions remained unrecognized at birth, which resulted in
female assignment (Cohen-Kettenis, 2005). In order to maintain
the original gender assignment and to stop virilization in XY
intersexuals, feminizing medical treatment such as gonadal re-
moval (gonadectomy), hormonal replacement therapy (HRT), and
genital surgery, including clitoris reduction and vaginal recon-
struction, have been widely practiced. The underlying paradigm
for these interventions has been the “optimal gender policy,”
which emerged in the 1950s and is closely associated with the
name of psychologist John Money. A central assumption was that
an intersex condition could limit psychosocial and psychosexual
functioning. Hence, the policy advised that “the newborn with
1
Although the 17-HSD-3 enzyme is responsible for converting andros-
tendion into testosterone (e.g., Twesten, Johannisson, Holterhus, & Hiort,
2002), 5␣-RD-2 is responsible for converting testosterone into dihydrotestos-
teron (DHT). In 5␣-RD-2 deficiency, which was originally reported by
Imperato-McGinley, Guerrero, Gautier, and Peterson (1974) in a Dominican
population, conversion from testosterone into DHT is disturbed as 5␣-RD-2 is
missing. This results in an undermasculinization and varying degrees of
ambiguity of the external genitalia. The genital may appear as a clitoral-like
phallus with a bifid scrotum and usually two openings (i.e., urethral and
vaginal). Gonads are situated in the inguinal canals or labial-scrotal folds. The
clinical picture of 17-HSD-3 deficiency (Saez, De Peretti, Morero, David,
and Bertrand, 1971) is similar to 5␣-RD-2 deficiency.
190 SCHWEIZER ET AL.
intersexuality should be assigned to that gender that permits the
optimal psychosexual and psychosocial functioning when all avail-
able medical treatment options are taken into account” (Meyer-
Bahlburg, 2004). During the past decade, medical practice based
on this policy has received growing criticism (e.g., Berenbaum,
2003; Brinkmann, Schu¨tzmann, & Richter-Appelt, 2007; Chase,
1998; Creighton & Liao, 2004; Liao & Boyle, 2004). Critics have
emphasized that irreversible medical interventions should only be
carried out when indicated by medical need or requested by the
individual affected (e.g., De Silva, 2007; Diamond & Sigmundson,
1997). Furthermore, the lack of follow-up studies has been ad-
ressed (e.g., Hughes et al., 2007; Nabhan & Lee, 2007; Thyen et
al., 2006). In addition, there is only little data on the psychological
aspects, such as individual coping with these interventions, as well
as on how they might have influenced gender identity experience
in persons with different intersex conditions (e.g., Schweizer,
Brinkmann, & Richter-Appelt, 2007).
Gender Identity
The psychological concept of gender identity was mainly influ-
enced by Stoller (1968) and Money (Money, 1994a; Money &
Ehrhardt, 1972; Pfa¨fflin, 2003). It refers to a person’s basic sense
of self as male or female or feeling between the sexes (e.g.,
Richter-Appelt, 2007; Ruble, Martin, & Berenbaum, 2006; Zucker
& Bradley, 1995). The related but different notion of gender role
refers to behaviors, attitudes, and traits of a person being culturally
designated as feminine or masculine (Zucker, 2002a). Although
adult gender identity is quite predictable in other intersex condi-
tions, in persons with 5␣-RD-2 and 17-HSD-3 deficiency it is
highly variable. Both male and female gender identity differenti-
ation has been observed (e.g., al-Attia, 1997; Cantu´ et al., 1980;
Hurtig, 1992; Kohn et al., 1985; Me´ndez et al., 1995; Mendonca et
al., 2000; Zucker, 1999). Gender dysphoria and gender change to
male were reported in a large proportion: About 60% of the
individuals reported in the literature changed from female to male
during adolescence and early adulthood (Bosinski, 2005; Cohen-
Kettenis 2005; De Vries, Doreleijers, & Cohen-Kettenis, 2007).
These phenomena particularly challenged the sex-of-rearing hy-
pothesis, according to which gender identity development was
mainly determined by consistent parental commitment to the as-
signed sex of their child (e.g., Money & Ehrhardt, 1972; Money,
Hampson, & Hampson, 1957). Hence, scholars started to take a
closer look at the biological and psychosocial factors involved in
gender identity formation and change. From a biological view-
point, frequent gender change and the gradual evolving of a male
gender identity in persons with 5␣-RD-2 deficiency was explained
by genetic, prenatal, and postnatal androgen effects (e.g.,
Imperato-McGinley, 1997). Biologic sex was argued to have the
power to override sex of rearing, “providing there is no interven-
tion to abort the natural sequence of events” (Imperato-McGinley,
1997, p. 386). However, biological factors did not seem to explain
the whole picture (e.g., Hines, 2004; Houk, Damiani, & Lee, 2005;
Wilson, 2001). An interactionist view assuming that gender iden-
tity development is a dynamic process relying on the interaction of
biological and psychosocial factors appears to be the most ade-
quate model that justly explains the complexity of gender identity
emergence (e.g., Bostwick & Martin, 2007; Diamond, 2006; Lee &
Kerrigan, 2004; Wilson, 1999). A more refined analysis has been
requested involving the study of such factors as the high social
status of males in the cultures in which gender change had occured,
internalized homophobia as a possible motor for sex reversal, and
a more differentiated look at the concept of sex of rearing and
parental influences (e.g., Cohen-Kettenis, 2005; Herdt & David-
son, 1988; Zucker, 1999, 2006; Zucker & Bradley, 1995). Further-
more, Zucker (2006) and Meyer-Bahlburg (2005) have pointed at
the lack of cognition about gender differentiation and the life
courses of such persons from industrialized countries, who were
able to undergo feminizing medical treatment.
Gender identity has mostly been conceptualized as a binary,
dichotomous construct. However, Stoller (1968) observed that
some intersexuals could develop a “hermaphroditic identity.” He
described this identity as a “rare psychological state” in which a
person “feels that he belongs to neither of the sexes,” developing
“aspects of both genders” (Stoller, 1968, p. 33). Similarly, Dia-
mond (2002) recognized that intersexual men and women might
identify as female, male, or intersexed” (p. 326). He thus requested
that “society and the medical community must come to terms with
different genital conditions rather than force compliance to any
ideal male or female category” (Diamond, 1997, p. 207). Mean-
while, more authors have proposed a more inclusive perspective on
gender and gender identity (e.g., Drescher, 2007; Fausto-Sterling,
1993; Ozar, 2006; Stark, 2006). Also, ethnological analyses have
demonstrated that individual gender experiences in persons with
“pubertal change syndromes” and other intersex conditions may go
beyond the binary conception of mutually exclusive male–female
categories (e.g., Herdt & Davidson, 1988; Lang, 2006; Lang &
Kuhnle, 2008). However, there has been only little empirical effort
to study individual, variant gender experience in adults with inter-
sexuality. In a pilot study, Schober (2001) interviewed 10 inter-
sexual adults who were all associated with the American Intersex
Society of North America (ISNA), a large intersex advocacy
group. Eight participants reported that their gender identity was
intersexual, rather than male or female. Unfortunately, the precise
intersex conditions of the interviewees were not reported. Zucker
(2002b) commented that these results diverged far from previous
findings; furthermore, he described ISNA members as “an unrep-
resentative subgroup of individuals” p. 1507. In her reply, Schober
(2002) stressed the importance of acknowledging possibilities and
the need to fully explore intersexual outcomes. Similarly to
Schober’s findings, Preves (2000, 2003) was able to conclude from
her qualitative study that particularly those intersexual interview-
ees who underwent medical treatment experienced themselves as
more gender variant, often embracing their intersexuality as a
distinct feature of their identity. Her sample included persons with
various intersex diagnoses, but none showed androgen synthesis
defects.
The lack of more inclusive and variation-friendly studies of gender
identity in individuals with intersexuality can be ascribed to the lack
of adequate measurement tools. Only recently have dimensional mea-
sures of gender identity been developed and published. Deogracias
and colleagues (2007) developed a scale based on a bipolar concep-
tualization, with a male and a female pole and varying degrees
between the poles. Eckloff (2007) proposed assessing four aspects of
gender identity (i.e., female, male, transgender, and certainty of gen-
der identity). Another attempt to broaden the dichotomous under-
standing of sex and gender is expressed in the idea of a third gender
category. Meyer-Bahlburg and colleagues (2004) asked 59 individu-
191
SPECIAL ISSUE: GENDER IDENTITY, COPING, AND ANDROGEN BIOSYNTHESIS DEFICIENCY
als with 46, XY intersexuality about their attitudes toward such a
category. Only 9 agreed that culture should permit a third gender.
However, we unfortunately do not learn anything from these findings
about the underlying arguments, which may derive from personal
gender experience.
Methodology and Research Question
In this article, we present multiple case analyses of 7 adult
persons with so-called pubertal change syndromes (5␣-RD-2 and
17-HSD-3 deficiencies). On the basis of the findings and the
research needs presented, our study aims to contribute to the
limited knowledge on coping and individual gender experience in
medically feminized 46,XY intersexual persons with defects in
androgen synthesis. As our knowledge on the psychological expe-
rience of individuals with these conditions lags far behind our
medical understanding, we want to examine two specific aspects of
coping: coping with the condition itself and dealing with
condition-related medical treatment. The underlying understand-
ing of coping refers to Lazarus, in which coping is understood as
a person’s perceived problem-solving and adaptation ability in-
volving cognitive and emotional processing, activated by stressful
situations (e.g., Lazarus & Folkman, 1984; Wei, Heppner, &
Mallinckrodt, 2003). The first research question explores charac-
teristic features of coping with “pubertal change syndromes.” How
did the participants cope with the sudden occurrence of physical
change during puberty? Is their coping characterized by “feeling
different” from other men and women? How time-intensive and
distressing is their everyday coping? To what extent was social
support and a discursive environment available by having people to
talk to about the condition? How did the participants cope with the
specific medical interventions experienced in “treatment” of their
condition?
The second research question focuses on the issue of whether a
binary gender conception is appropriate to describe individual gender
identity experience in the persons studied. Aiming to explore gender
identity in a wider and more inclusive sense, a multidimensional
approach to gender identity is used, differentiating between female,
male, and transgender expressions, and a person’s perceived certainty
of belonging to a gender (Eckloff, 2007). Furthermore, we aimed to
explore whether gender identity experience differs in dependence of
referring to either a global or a context-specific understanding by
investigating gender identity in a global sense and also in the context
of sexual experience. Aiming to grasp individual gender identity, the
participants’ self-reported satisfaction with their original gender as-
signment, their gender and sex-related fantasies, and their attitudes
toward third gender conceptions were analyzed.
Due to the exploratory nature of the study and aiming to extend
the study’s possible results, we considered a mixed-methods de-
sign most appropriate to examine the research questions (Hanson,
Creswell, Clark, Petska, & Creswell, 2005; Ponterotto, 2005). A
mixed-methods research design allows assessing both in-depth and
quantifiable data. Numeric trends can be converged with detailed
information from qualitative data and vice versa. The author’s
underlying research paradigm stems from a pragmatic combination
of a postpositivist and constructivist phenomenological perspec-
tive (Hanson et al., 2005). The research lens is guided by an
advocacy-based approach, with the intention of obtaining a better
understanding of individuals who belong to the minority group
studied, hoping to be able to deduce future research directions and
clinical recommendations for more adequate services.
Method
Design and Procedure
Having chosen a mixed-methods research design, qualitative
and quantitative data were collected at the same time, with an
equal priority placed on both data types [QUAN ⫹QUAL].
According to the typology provided by Hanson and colleagues
(2005), the design can be characterized as concurrent transforma-
tive. The study is part of a larger research project on quality of life
and treatment experiences in adults with different forms of inter-
sexuality conducted in Germany. More than 70 persons with
different intersex conditions participated, involving individuals
with androgen insensitivity syndrome, gonadal dysgenesis, con-
genital adrenal hyperplasia, true hermaphroditism, and androgen
biosynthesis deficiency. Participants were recruited in different
ways: medical doctors of different disciplines (e.g., gynecologists,
endocrinologists, and physicians) were contacted by mail and
asked to refer patients with DSD diagnoses to the study. Further-
more, the main German intersex patient and support groups were
informed and asked to distribute informational material. Groups
contacted included “XY-Women” [“XY-Frauen”], “Intersexual
People” [“Intersexuelle Menschen e.V.”], and the “CAH patients’
initiative” [“AGS-Patienteninitiative”]. A home page was devel-
oped to inform widely about the investigation and to advertise for
participation. Informational material was also distributed at scien-
tific conferences on DSD and related fields. This recruitment
strategy aimed at including a wide range of participants; however,
it did not allow for calculation of participation rates.
Data collection took place at the study center. Participants were
informed that treatment experiences and quality of life in persons
with intersex conditions would be studied in the investigation.
Participants gave written informed consent to participate and per-
mission to use their data anonymously for research purposes and
publication. They completed a comprehensive questionnaire and
gave written permission to contact their physicians for medical
records. Participants were offered psychological counseling if they
wished to talk about their experiences afterwards.
Participants
For this study, only participants who showed defects of andro-
gen biosynthesis based on a 46,XY karyotype were included.
These criteria were fulfilled and confirmed by the medical records
in 7 persons: 4 with 17-HSD-3 deficiency (Anne, Barbara, Clau-
dia, Daniela) and 3 with 5␣-RD-2 deficiency (Emily, Fiona, Gina).
Note that all names are pseudonyms. The participants were in-
formed about the study in different ways. Barbara and Daniela
heard about the study via the support group “XY-Frauen”; Emily
was informed by her medical doctor; Claudia was informed via a
friend, who was also a medical doctor; Gina heard about it at a
conference on DSD, which was initiated by a support group. Anne
responded to informational material of the research group, and
Fiona found out about it on the Internet.
Migration background was reported by Gina, who grew up in
the Middle East with an Arabic ethnic background. She had been
192 SCHWEIZER ET AL.
living in Germany for 12 years, having moved to Germany at age
24. The others had a Middle European ethnic background, and all
of them grew up in Germany. They reported high levels of edu-
cation: 5 had completed high school exams qualifying for univer-
sity; Anne reported 9 years of schooling (corresponding to the
German “Volksschulabschluss”), and Daniela had 10 years of
schooling (corresponding to the German “Mittlere Reife”). Anne,
Claudia, Daniela, and Gina reported having a current partner
relationship; the others were single. Two had raised children:
Daniela had adopted children with her husband, and Anne had
raised children with her former partner. Anne, Fiona, and Gina
reported being bisexual; Emily identified as homosexual. Barbara,
Claudia, and Daniela reported heterosexual orientation, with Bar-
bara and Claudia also reporting asexual orientation. Anne further
commented, “As an intersexual, I feel free to love any one I like!”
Table 1 displays relevant medical information. All 7 participants
reported that they showed female-looking genitalia at birth, with
Fiona and Gina reporting a markedly enlarged, but still “rather”
female-looking clitoris. They were all assigned female at birth and
still live in the female gender role today. Age at first diagnosis of
an intersexual condition ranged from 7 to 16. Age at receiving first
information about their condition ranged from 13 to 17 years. Only
for Claudia, Emily, and Gina, age at disclosure and age at diag-
nostic verification were identical. The others were informed about
their condition later. In addition, the accurate diagnosis of 17-
HSD-3 or 5␣-RD-2 deficiency was confirmed even later in adult-
hood in all participants except for Emily and Fiona. Regarding
treatment experiences, all 7 were gonadectomized and subse-
quently received “female” HRT (estrogenes and/or gestagenes).
Barbara, Claudia, Daniela, Fiona, and Gina underwent genital
surgery, including vaginal reconstruction and clitoris reduction.
Measures
A comprehensive questionnaire was developed, including stan-
dardized and author-constructed instruments. The entire set con-
sisted of five parts: a sociodemographic section; a section on
physical development; information and disclosure experiences;
treatment experiences; and standardized questionnaires assessing
psychological distress, gender identity, body experience, sexuality,
and life satisfaction. Due to the lack of existing measures, author-
constructed items were developed to assess the research questions.
Two types of items were developed: (a) forced-choice items with
binominal or interval response scales, depending on the nature of
the question, and providing additional space for comments, and (b)
open-answer questions on areas that have been understudied in
order to get an authentic description of the participants’ experi-
ences. In the following, the instruments used to examine the
research questions are introduced thematically.
Coping with the condition. Participants were asked in an open
question whether they had experienced any problems resulting
from the distinct features of their condition at puberty and to
characterize them in their own words. Feelings of difference were
assessed by asking “Was there a point in time when you sensed
that you were different from other men or women?” and by
reporting their age. The perceived extent of internal processing and
reflecting was assessed by asking on a 5-point Likert scale ranging
from 1 (no time at all)to5(very much time) “How much time do
you spend reflecting and dealing with your condition today?” By
also using a 5-point Likert answering scale, the extent of
condition-related distress was assessed with the item “How much
distress have you experienced due to the condition in the past two
weeks?” Coping resources of social support were assessed by
asking participants whether they had someone to talk to openly
about their special situation and condition between age 11 and 16
as well as presently, on a yes–no answering scale, providing
additional space to specify.
Coping with treatment experiences was assessed by open-
answer items asking participants about their remembered thoughts
and feelings related to hormonal and surgical treatment experi-
ences, also providing space for extended comments.
Gender identity was assessed by the Gender Identity Questionnaire
(Eckloff, 2007). The instrument includes four scales, measuring male,
Table 1
Medical Information: Condition, Diagnosis and Disclosure, and Treatment Experiences in the Participants
Participant Age Condition
Diagnosis and disclosure (age)
Medical interventions experienced (age)
First intersex
diagnosis
First
disclosure
Accurate
diagnosis
1. Anne 60 17-HSD-3 16 17 60 Gonadectomy (17), HRT
a
(17)
2. Barbara 43 17-HSD-3 7 16 41 Gonadectomy (7), HRT
a
(14), vaginal surgery (21, 21, 30,
31)
3. Claudia 26 17-HSD-3 15 15 25 Gonadectomy (16), HRT
a
(16), clitoris reduction (16),
vaginal surgery (17)
4. Daniela 48 17-HSD-3 12 13 48 Gonadectomy (12), HRT
a
(12), clitoris reduction (12),
vaginal surgery (24)
5. Emily 31 5␣-RD-2 16 16 16 Gonadectomy (17), HRT
a
(17)
6. Fiona 32 5␣-RD-2 12 16 12 Gonadectomy (13), HRT
a
(13), clitoris reduction (13),
vaginal surgery (13)
7. Gina 36 5␣-RD-2 14 14 28 Gonadectomy (28), HRT
a
(28), clitoris reduction (28),
vaginal surgery (28)
Note. 17-HSD-3 ⫽17beta-hydroxysteroid dehydrogenase-3 deficiency; HRT ⫽hormone replacement therapy; 5␣-RD-2 ⫽5alpha-reductase-2
deficiency.
a
Hormone replacement therapy (with estrogen and/or gestagenes).
193
SPECIAL ISSUE: GENDER IDENTITY, COPING, AND ANDROGEN BIOSYNTHESIS DEFICIENCY
female, and transgender identity as well as certainty of belonging to a
gender on a 5-point Likert answering scale ranging from 1 (disagree)
to5(I fully agree). For instance, participants were asked to which
extent they felt like a woman or a man (for female and male gender
identity), to which extent they could imagine both, feeling like a man
and a women (transgender) and to which extent they felt certain about
their gender (certainty). Reliability information was obtained from a
sample participating in a Web-based study (n⫽895, with 525
females, 370 males). Evidence of validity was based on a subsample
of the Web-based study participants (n⫽653, 347 females, 306
males; Eckloff, 2007). In order to be valid and applicable for inter-
sexual persons as well, the original male and female scale have been
reduced by one item each (i.e., referring to being a man, respectively,
a woman.) Both scales now include four items; the Transgender scale
consists of four and the Certainty of Gender Identity scale consists of
seven items. Reliability information of the modified version has been
obtained from the larger research project, including all participants
whose intersex/DSD diagnoses were confirmed by medical records
(n⫽69). Cronbach’s alpha values were .95 for the Male Identity
scale (.81 for womens, .84 for men, .87 for intersexuals), .95 for the
Female scale (.84 for women, .82 for men, .92 for intersexuals), .87
for the Transgender scale (.87 for men and women, .70 for intersexu-
als), and .92 for the Certainty of Belonging to a Gender scale (.92 for
men and women, .89 for intersexuals).
Participants were further asked whether they agreed with the
following statements:
Since early adulthood, I have experienced myself (a) as a woman, (b)
as a man, (c) sometimes as a woman, sometimes as a man, (d) I have
had fantasies of myself as a man or a male figure, and (e) I have had
fantasies of myself as a woman or a female figure.
Participants were also asked about their gender identity experience
during sexual activity with their partners and during masturbation;
nominal answer options were don’t know; as a woman; as a man;
sometimes as a man sometimes as a woman; and “other.”
Individual gender experiences. Gender satisfaction was as-
sessed by asking participants on a 5-point Likert scale how satisfied
they were with their assigned gender ranging from 1 (very unsatisfied)
to5(very satisfied). Furthermore, they were asked whether they had
changed their gender according to their own wish (yes or no).
Fantasies about the preferred sexual development were assessed by
using an open-answer item, “If you were born today with the body
you had at birth, what would your preferred sexual development
be?” In addition, they were asked whether they had experienced
“fantasies about my genitalia.” Finally, attitudes toward introduc-
ing a third gender category were measured by asking “We would
like to ask your opinion on whether introducing a third gender
would make sense to you?” using binominal answer categories
(yes or no) and providing extra space to explain their choices.
Statistical and Qualitative Analysis
Data analyses followed both quantitative and qualitative para-
digms. Given the small number of cases, case analyses were based on
descriptive analyses of both types of data. For the standardized scales,
the respondents’ mean scores on each gender identity scale were
calculated and transformed into zscores on the basis of a control
group of heterosexual nonintersexual women (Eckloff, 2007). Z
scores greater than one standard deviation are considered as signifi-
cantly decreased, respectively increased. Previous findings of a pre-
liminary analysis of 5 of the participants were reanalyzed on the basis
of the decision to modify the male and female gender identity scales
as described above (Richter-Appelt, Discher, & Gedrose, 2005). The
findings now are presented on case level. We thereby respond to the
critique voiced by De Vries and colleagues (2007) by making iden-
tification of cases and each diagnosis (i.e., 5␣-RD-2 and 17-HSD-3
deficiencies) possible. Qualitative data, in the form of written com-
ments and responses to open-ended questions, were analyzed sepa-
rately using qualitative content analysis following a phenomenologi-
cal approach (Mayring, 1990; Wertz, 2005). The participants’ written
responses were documented in full length. Extensive and redundant
responses were reduced into meaning units and thematically summa-
rized. Some responses, however, are presented in their full length in
order to keep their density and meaning. After analyzing the two types
of data separately, results were converged to answer the research
questions. They are organized thematically in the following section.
Results
Coping With the Condition
All participants reported that they experienced psychological
problems and distressing feelings in response to the unexpected
virilizing of their bodies during puberty. Anne, Barbara, and Gina
explicitly remembered worrying about stability of their gender
identity and gender role. Anne had experienced “irritations about
my gender role,” Barbara remembered “doubts about my identity
as a girl,” and Gina went through “identity problems due to being
seen as a man by others.” Claudia wrote that she was unhappy
about her male appearance. Fiona reported thoughts of suicide due
to the discrepancy between her assigned gender and outer appear-
ance. Anne, Barbara, and Daniela reported problems of social
withdrawal. In addition, Daniela described feelings of shame and
being “an outsider.” Anne recalled loneliness and helplessness.
Anne and Daniela had also experienced increased insecurity.
Emily described that she had developed depression and eating
disorders during her youth.
All 7 agreed that there was a point in time when they felt
different from other men and women. Barbara, Daniela, Emily,
and Gina reported they had realized such a feeling between age 12
and 13. Anne, Claudia, and Fiona remembered noticing such a
sense of “otherness” quite early at the age of 4 and 5. Thus, they
could be labeled as early knowers Anne commented that she first
noticed being different at the age of 5, but she “could not fix this
to anything.” It then became clearer to her at the age of 12 because
of her “enlarged clitoris.” Claudia similarly expressed, “At first
there was this feeling of not really belonging anywhere, which was
later confirmed by the physical development.”
With regard to social support, Claudia was the only one who
reported that she had someone she was able to talk to about the
unusual experiences between age 11 and 16. These were her
friend, her parents, and the medical doctor. The others reported
that there was nobody to talk to about the condition. Anne and
Emily explicitly expressed regret about this lack of support. In
contrast, today all 7 participants report having people they can talk
to about their situation. The most frequent were friends, named by
all participants except for Anne, physicians and other medical
doctors (Barbara, Claudia, Daniela, Emily, Fiona, Gina), other
194 SCHWEIZER ET AL.
intersexuals and members of support groups (Anne, Barbara, Clau-
dia, Daniela), partners (Anne, Claudia, Daniela), followed by
family and parents (Emily, Claudia), and a therapist/counselor
(Daniela). Today, the participants consistently report that they
spend much time reflecting on and dealing with their condition. In
the 2 weeks prior to the interview, distress caused by dealing with
the condition was high in Claudia, Fiona and Gina; Daniela and
Emily were partly, and Anne only a little distressed. Barbara did
not reply to the question.
Coping With Surgical Treatment Experiences
As we now turn to the findings on coping with treatment
experiences, an overview of the experiences and interventions
discussed is provided in Table 1. All 7 participants had to cope
with the surgical removal of their gonads. Anne, Daniela, Emily,
and Fiona described feelings of strangeness or being “not right.”
Anne recalled thinking, “I am a monster, a freak. I have to be cut
in order to become right.” Emily also experienced feelings of
anxiety, powerlessness, reluctance, and hopelessness. Claudia,
Fiona, and Gina remembered that they had placed much hope in
gonadectomy. Gina wrote, “something is taken away from me, in
order to vigorously promote my ‘becoming female.’. The problem
of my life will be solved, and a better time in life will begin.”
Fiona had hoped that “afterwards everything would be all right
with my body,” but looking back on the whole process of inter-
ventions, she resumes her belief that genital surgery and pain could
have been avoided if the “testes” had not been removed. Claudia
described inner ambivalence in reaction to gonadectomy, “Will I
become a woman now? Somehow I was somewhat happy to get rid
of those small things, which made me male.” She was hoping “to
look like a woman and to have sex like a woman and to gain
greater acceptance for myself, and I wanted to get rid of the signs
of masculinization.” But today, she is more critical of gonadec-
tomy and assumes it would not have been necessary.
Five participants (Barbara, Claudia, Daniela, Fiona, Gina) also
underwent vaginal surgery. Claudia exemplified that she had dealt
with unsettling questions such as “Is it worth the pain? Is it now
the same to being a real woman? Will I be able to feel anything
during sex? Will men realize that something is different?” The
surgery itself was “ok,” but it was associated with negative mem-
ories such as “being tied to the bed” and “feelings of helplessness.”
She recalls thinking that “the pain and dilatation should be
avoided” because “you start to hate your vagina.” She further
writes she was “afraid of having sex because men could notice.”
Another drastic memory was reported by Barbara, who had expe-
rienced repeated sessions of vaginal reconstruction:
Before the first vaginal surgery, I was hoping that the result would be
satisfactory and that it would help me to be less timid in my relation-
ships with men. The surgeon had no clue but strongly recommended
a vaginoplasty. An odyssey of . . . interventions to enlarge the vagina
was initiated, which was much more traumatizing than what had been
done before.
The result is not satisfying, but at least the chronic wound with
which I had to run around for nearly ten years is now grown over
and does not need a dilator anymore . . . which I had to carry
around the clock.
Fiona also described regret and negative memories of pain from
vaginal dilatation through a “phantom.” (Phantom refers to the
dilator that she had to apply to dilate and widen the vagina.)
Thinking about both vaginal and clitoral surgery at the age of 13,
she remembers that she first started to scrutinize these interven-
tions many years later as an adult.
With regard to clitoris reduction surgery, Claudia remembered
doubts about the functioning and sensitivity of her clitoris after
surgery. She wrote, “Will I be able to feel anything? When will I be
able to masturbate again, and will this be possible at all?” Although
considering it a “sensible intervention,” she evaluated “means, result,
extent and procedure” as “too extreme.” Today, 10 years later, she
resumes, ”I feel neither better nor worse, but I ask myself how it
would be today with a nonreduction and also, is the result really as
good as the doctors say?” This critical view was shared by Daniela,
who was the youngest to undergo clitoris reduction at age 12. She
considered it to be neither necessary nor sensible. In contrast, she
seems to have coped much better with vaginal surgery during adult-
hood. She writes that she had hoped vaginal surgery would help her
to “become normal.” Looking back, she resumes that her sexual life
has actually become more satisfying, although “it might be even better
without the clitoris reduction.”
Coping With HRT
Turning to the participants’ reported thoughts and feelings re-
lated to HRT reveals both hope and disappointment. Hopes set on
HRT mainly referred to age-typical sex development. Barbara
described “the vague hope to get my menses” like other girls. Both
she and Claudia were hoping to develop bigger breasts, and Fiona
was hoping to get a female voice. Hope was also expressed by
Gina, remembering, “Finally I am becoming a real woman. I am in
the process of ‘becoming a woman.’” Five participants emphasized
mentally and physically distressing aspects of HRT. Anne wrote,
“I hated HRT because it reminded me of my problem daily.” Fiona
worried about having a “severe illness” because she needed med-
ication. Daniela was annoyed by being “put off by the gynecolo-
gists’ explanation that ‘all women have some kind of discomfort.’”
Barbara, Claudia, and Gina referred to the negative side effects of
HRT: Barbara and Gina both assumed that their depressive symp-
toms were related to HRT. Gina further mentioned the physical
side effects such as low blood pressure and water retention in her
legs. Claudia gave a more detailed account of her dissatisfaction
with HRT:
There was little support in finding HRT appropriate for my intersexed
body . . . . In one way I am happy that hormones “helped” me to
femaleness. But also I am sad and upset about having to take anything
at all. It was disappointing to be pumped full with climacteric medi-
cine . . . . Monotherapy generally is wrong because gonads do not
produce only a single hormone, and because of the side effects, and
because my body was treated the same way a woman’s would be
treated even though it does not react like a female body.
Barbara remembered thinking that she needed medication because
she was “not a normal girl.” Similarly, Daniela expressed in a
general remark that both HRT and surgeries intended to treat her
condition during puberty had an impact on her sense of self, “I
often had the feeling of not being real, but rather a patchwork of
surgeries and hormones.”
195
SPECIAL ISSUE: GENDER IDENTITY, COPING, AND ANDROGEN BIOSYNTHESIS DEFICIENCY
Gender Identity and Individual Gender Experiences
Turning to the second research focus, all 7 participants reported
that since early adulthood, they had experienced themselves as
women, both in their fantasies and in real life. However, only
Barbara and Daniela reported having experienced themselves as
exclusively female. Claudia, Emily, Fiona, and Gina also experi-
enced themselves sometimes as women, sometimes as men; Anne
changed the wording of the answer categories and replied she felt
“sometimes as a woman, sometimes neither nor.” Emily, Fiona,
and Gina further reported that they had also experienced them-
selves as men before. With regard to gender fantasies, all had
imagined themselves as female persons. In addition, Anne, Clau-
dia, Fiona, and Gina had also fantasized about themselves as male
figures before.
During sexual activity with a partner, Barbara, Claudia, Daniela,
Emily, and Fiona constantly perceived themselves as women,
whereas Gina saw herself sometimes as a woman and sometimes as
a man. Anne wrote that she experienced herself as “between man and
woman.” During masturbation, Barbara, Claudia, and Daniela re-
ported fantasizing about themselves as women, whereas Anne and
Gina reported that they experienced themselves sometimes as a
woman and sometimes as a man. Emily described a “neutral” self-
experience, and Fiona answered as not having any fantasies.
Additional findings related to gender identity are summarized in
Table 2. On the gender identity scales, we found a tendency of low
femaleness and low certainty of gender identity in all participants.
Results on both scales were markedly decreased in all but Gina.
Gina was the only one who showed low male identity. The others
showed high male gender identity, with markedly increased male
scores in Barbara, Claudia, Emily, and Fiona. Transgender identity
was markedly increased in Anne, Claudia, and Fiona. Regarding
their satisfaction with the original gender assignment, Barbara,
Claudia, Daniela, and Emily reported being satisfied. Fiona and
Gina were moderately satisfied. Anne was dissatisfied. The par-
ticipants’ explanations shed more light on their underlying expe-
rience. Their responses are displayed in Table 2. Anne showed
dissatisfaction because to her, a male assignment would have been
more appropriate. Claudia and Daniela could not imagine them-
selves being male or living in a male role. However, Claudia,
Daniela, Emily, Fiona, and Gina all described their gender satis-
faction and experience in neither fully male nor entirely female
expressions. Emily indicated she saw aspects of both genders in
herself. Claudia described a self-image that was neither male nor
female. Fiona could also imagine herself in the male gender,
whereas Gina felt that she belonged to a third gender. Daniela did
not find gender to be an important category. Despite differences in
gender satisfaction, all of the participants have remained within
their originally assigned female gender roles. Fiona and Gina
reported that they had previously considered gender change. Gina
wrote that she had had very secret thoughts about a gender change
but had never talked to anyone about it. Fiona expressed that she
had considered a gender change at the age of 19. To her, the main
reason for not changing was the lack of parental support: “My
mother rejected this because she sees me as a complete woman.
When asked what she would have done if I had changed, she said
that she would have moved away because of feeling ashamed
before the neighbors.”
All 7 participants reported their fantasies regarding their favored
development (see Table 2). Those with only moderate gender
satisfaction answered in terms of the traditional gender binary:
Table 2
Gender Identity, Satisfaction With Gender Assignment, and Attitudes Toward a Third Gender in the Participants
Participant
Gender identity
a
Satisfaction with gender assignment
b
Preferred gender development
Pro third
genderFMTC
Anne ⫺4.06 0.97 1.46 ⫺5.65 “From today’s perspective, male assignment
might have been better, but was not
considered then.” (2)
“I would have preferred not to have
been born with this body at all.”
no
Barbara ⫺1.23 1.37 0.81 ⫺1.42 “Until 1972/73, I got along well with it.” (5) “Perhaps my outer appearance would fit
better to a man than to a woman
looking pretty male. Anyhow, it
would be desirable to have an
environment which would allow me
to live as an intersexual human
being. Then I could have gone
without surgery.”
—
Claudia ⫺1.23 3.75 2.32 ⫺1.03 “I couldn’t imagine myself being male,
although I am not female either.” (4)
“...asawoman with an intersex or
male psyche and feelings.”
no
Daniela ⫺1.23 0.57 ⫺0.06 ⫺1.03 “I could not think of myself in the
male role. But, gender is not that
important.” (4)
“I want to be what I am!” yes
Emily ⫺2.64 1.76 1.02 ⫺1.80 “I live in the female role and have just
started to discover my male parts.” (4)
“No change.” no
Fiona ⫺2.64 3.35 2.76 ⫺2.57 “I could imagine living as a man.” (3) “Male.” yes
Gina ⫺0.28 ⫺1.02 0.37 ⫺0.26 “I have a feeling of belonging to a third
gender.” (3)
“. . . maybe as a normal woman.” yes
Note. F⫽female; M ⫽male; T ⫽transgender; C ⫽certainty of belonging to a gender. Dash indicates data were not obtained or are not available.
a
Gender identity Zscores (M⫽0, SD ⫽1).
b
Answer scale ranging from 1 (very unsatisfied)to5(very satisfied), with gender satisfaction scores
displayed in parentheses.
196 SCHWEIZER ET AL.
Fiona had preferred to be male; Gina wanted more to be a “normal
woman.” Anne expressed a tendency to reject the body she was
born with altogether. Barbara, Claudia, Daniela, and Emily, who
were all satisfied with their female gender assignment, self-
confidently expressed that they preferred to be and remain as they
were, unchanged, hoping to be accepted by and find approval in
society in their individuality and intersexuality. All except for Gina
reported that they had had fantasies regarding their genitalia since
early adulthood; 4 commented on these fantasies. Claudia wrote,
“I try to imagine how it would be with a ‘real’ vagina or penis
or how it would be to have sex with my originally enlarged
clitoris.” Daniela fantasized that “everything would be ‘nor-
mal,’ and I would be desirable.” Fiona wrote: “Sometimes I
wished to have a penis to be able to have sex with women.” Emily’s
fantasies dealt with the wish for “acceptance of the clitoral enlarge-
ment.” The findings demonstrate that there is an inner dealing with
the genitalia in these participants no matter whether they have
experienced genital surgery or not (see Table 1). The fantasies
refer to the own genitalia in their original and untreated state, but
they also refer to comparisons with internalized ideas of “normal”
or “real” genitalia.
The idea of introducing a third gender category split the partic-
ipants into two halves, with 3 in favor (Daniela, Fiona, Gina), 3
opposed (Anne, Claudia, Emily), and 1 not voting (Barbara).
Looking at the participants’ explanations again gives a more
insightful picture than merely looking at the direction of their vote.
The progroup argued as follows: Daniela wrote, “There would be
more time for gender assignment . . . and you would be allowed to
be what you are.” Fiona explained, “Because I neither see myself
as a pure woman nor a man, rather somewhere in-between, and
because I would not have to press myself into a given scheme
where I do not feel all right.” Gina argued, “This could allow
people . . . to find an identity with which they could feel comfort-
able.” The participants opposed to a third gender category argued
as follows: Anne wrote, “From a biological standpoint, the gender
binary does exist, but it includes a broad spectrum—these varia-
tions should be socially and ethically accepted.” Claudia expressed
a postgender view, “because there are even more than three sexes
and this would create even more pressure. What about those
intersexed humans who view themselves as men or women? Let’s
rather abolish the two genders altogether.” Emily argued in a
similar manner, she wrote, “This would be just another pigeon-
hole and would not advance the debate on the issue in society any
further.” Barbara did not vote but extensively explained her view:
Every intersex person should choose in which gender role she wishes
to live officially. Whoever is not able to do so should be entitled to
live as an intersexual or asexual human being. It is important that
intersex conditions are recognized as something existing in actuality,
which does not need to be erased by therapy. It should also be possible
to change gender . . . without having to use the law for transsexuals.
(Although a specific law for transsexuals was issued in Germany
in 1980, there is no legal acknowledgement of intersexuality; see
Cohen-Kettenis & Pfa¨fflin, 2003).
In summary, although the participants had differing opinions on
the idea of a third gender category, they unequivocally expressed
their appreciation of individuality and gender variety.
Discussion
The purpose of this study was to explore coping and gender identity
experiences in seven 46,XY intersexual persons with 5␣-RD-2 and
17-HSD-3 deficiencies. Not surprisingly, coping with these rare
conditions, especially with the unexpected pubertal changes, was
highly unsettling and caused psychological problems in all partici-
pants. These findings illustrate that “psychic disturbances” occur not
only in persons transitioning but also in individuals remaining in the
assigned gender (Aguilar-Diosdado et al., 1995). All had noted a
sense of difference from other women or men when growing up. In
some, this sense had already emerged in early childhood. This finding
supports the observation that feelings of otherness are a distinct
feature of intersexual experience (Diamond, 1997). Disruptions in
personal gender experience appeared to be a critical issue. Dealing
with developmental challenges that are atypical for one’s sex and
gender have been recognized as a difficult experience (e.g., Cohen-
Kettenis & Pfa¨fflin, 2003; Hiort et al., 2003). Particularly striking was
finding that only one participant reported having had people to talk to
about the challenging situation during puberty and adolescence. This
mirrors biographical reports by individuals with different intersex
conditions pointing at taboo and silence being central to their expe-
rience while growing up (e.g., Coventry, 1999; Fro¨hling, 2003).
Coping in adulthood was characterized by time-intensive inner pro-
cessing in all participants, causing distress to some, indicating that
coping with such a special condition is an ongoing process (Diamond,
1997).
As much as the “optimal gender policy” was led by the intention to
alleviate stigma and psychosocial distress in intersexual persons (e.g.,
Preves, 1998), the reports of emotional distress, insecurity, and lone-
liness during the critical phase of puberty showed that psychological
care was far from optimal. The cases further illustrate high adjustment
challenges caused not only by the condition itself but also by the
medical treatment experienced. Coping with feminizing medical treat-
ment was characterized by ambivalent feelings such as hope and
disappointment. Ambivalence was related not only to genital surgery
but also to gonadectomy and HRT. Several resumed the belief that
treatment does not only have benefits, but it may also come with side
effects; some had experienced hormonal and surgical interventions as
being too extreme or unnecessary. Also, individual treatment memo-
ries revealed that medical interventions could have an impact on a
person’s sense of self, which was previously shown by Preves (2000,
2003). Furthermore, participants’ fantasies of their own genitalia
reveal tendencies to reflect on how their situation might be in the
“untreated” or “normal” case. Thereby, it becomes clear that it is
important to reflect one’s perspective on intersex genitalia when
considering genital surgery. This would require to look at both sides
of the medal, that is, not only following the long-prevailing view that
“deformed” genitalia would negatively affect persons and should thus
be corrected into “normal” looking genitalia but also recognizing that
surgery could damage intact genitals (Kessler, 1998). Decision mak-
ing on such treatment interventions has not been much studied but has
yet to be further investigated (e.g., Ju¨rgensen et al., 2006). Closely
connected is the issue of information management, disclosure and full
consent, which has also been understudied and needs to be addressed
urgently in future research on the clinical management of intersexu-
ality/DSD (e.g., Hughes et al., 2007).
With respect to the second research focus, the analyses gener-
ated important insights into individual gender experience. All
197
SPECIAL ISSUE: GENDER IDENTITY, COPING, AND ANDROGEN BIOSYNTHESIS DEFICIENCY
respondents had developed female gender identification. In addi-
tion, a synoptic analysis of the findings allows identifying nonbi-
nary gender expressions in all participants. These include a “bio-
logical variety perspective,” an intersexual, postgender, individual,
mixed, in-between, and third gender identification. Using an in-
clusive, multidimensional approach to gender identity, tendencies
of increased male and transgender identity, decreased female iden-
tity, and high degrees of uncertainty of gender identity were found.
In summary, these findings demonstrate that a strict binary gender
conception based on dichotomous “either– or” thinking appears to
be too narrow to adequately describe subjective gender experience
in the persons studied. One would need to further elaborate on how
to conceptualize these experiences. On the one hand, the identity
labels of third sex,intersex, or mixed gender expressions such as
“a woman with an intersex or male psyche” could be interpreted as
indicators of a genuine intersex identity category (Kessler, 1998).
Diamond (1997) and Kessler (1998) similarly observed that some
intersexuals use an intersexual identity label to describe their
unique gender identity. Kessler (1998) argued that such a category
would be even more appropriately termed as intergenderal. Using
the language of his time, Stoller (1968) had proposed the concept
of a hermaphroditic identity. On the other hand, the findings could
also be interpreted along the conceptualization of an intersexual
identity as a modifier of one of the two standard genders (Kessler,
1998). Such a conceptualization would do justice to the fact that all
participants did describe themselves in female terms but further
elaborated their gender identity script with additional self-
descriptions. Whichever of the two lines of interpretation we
follow, the main message for the persons studied is that they
experience more than solely male or female gender identity. Per-
haps a model conveying gender as a continuum would be an
acceptable approach to cover the subjectivities illustrated
(Shipherd & Harris, 2004). It would be worthwhile to further study
the explicit and implicit gender models not only of intersexual
persons but also of clinical professionals working with them.
Although this article was not mainly concerned with the etio-
logical aspects of gender identity, it does contribute to the ongoing
discussion. With respect to the classic debate on nature’s and
nurture’s impact on gender identity development, the case material
presented is best understood in light of an interactionist paradigm,
as it emphasizes the power of both socialization and biology. On
the one hand, female gender assignment, rearing, and feminizing
medical treatment showed long-lasting effects, as all participants
remained in the originally assigned gender role. On the other hand,
in spite of invasive hormonal and surgical feminizing interven-
tions, gender identity appeared to be quite diverse, and treatment
did not guarantee high levels of certainty of gender or a solid
female identity. The increased level of male gender identity and
reported male self-experience in the participants with underlying
5␣-reductase-2 deficiency is in line with previous observations
(Bosinski 2005; Cohen-Kettenis, 2005; Houk et al., 2005). Hence,
biological influence in the development of identity, possibly via
prenatal and/or postnatal androgen exposure, cannot be totally
denied (Hines, 2004; Imperato-McGinley, 1997; Wilson, 2001).
Future research should continue to study both aspects of inter-
sexual experience: individual coping and gender experience. The
choice of a mixed-methods research design was shown to be an
appropriate means. We thus agree with Reiner (2004), who com-
mended it as being “the path to understanding intersex conditions
and how people experience them” p. 52. Further investigation of
gender identity in intersex and other groups could benefit from the
use of inclusive conceptualizations and dimensional measures (De-
ogracias et al., 2007; Eckloff, 2007). This study has responded to
the call for research on experiences of medically feminized indi-
viduals with androgen biosynthesis defects (Meyer-Bahlburg,
2005; Zucker, 2006), which still needs to be further pursued.
Nevertheless, the research questions should also be studied in
persons with different developmental courses. For instance, it
should be examined how individuals with these and other condi-
tions have coped with medical efforts to be masculinized (Chertin,
Koulikov, Hadas-Halpern, & Farkas, 2005).
Limitations of the study need to be noted. First of all, the
possibility to draw general conclusions is highly constricted be-
cause of the small numbers of participants. Furtherore, psycho-
metric weaknesses of single-item measures as well as the wide
range of ages need to be mentioned. Regarding the accounts of
treatment experiences, the time span between experienced medical
interventions and recent reflection varies greatly. Thus, the results
could be impacted by psychological memory effects, although
biographical material, retrospectively assessed, is always subject
to cognitive limitations. In addition, recruitment strategy provided
for varied backgrounds of the participants. Support group affilia-
tion, which could be inferred in some participants, has been
previously described as biasing for samples (e.g., Zucker, 2002b).
We would like to question this position, as both in Germany and
the United States, support and patient groups increasingly play an
important role in intersex and DSD-related health care. Also,
networks and organizations of clinicians, patients, support groups,
and other stakeholders have been successfully initiated (e.g., Ac-
cord Alliance, 2008; Arbeitsgruppe Ethik im Netzwerk Intersexu-
alita¨t, 2008; Consortium on the Management of Disorders of Sex
Development in Childhood, 2006). As Schober (2002) pointed out,
support group membership can correlate with being highly knowl-
edgeable and well informed about one’s condition. The high level
of education in our group might be seen in this context. In any
case, it may explain the capacity to express inner states verbally, as
shown in the participants’ differentiated remarks and comments.
Although the small group of individuals studied does not
allow for general conclusions, implications can be drawn for the
field of counseling psychology. As coping with an intersex
condition such as androgen biosynthesis defects and the
condition-specific experiences presents great adjustment chal-
lenges, counseling psychology could play an important part in
offering support to families and individuals dealing with these
challenges. Although general concepts of care have started to
recognize that counseling should be offered (Hughes et al.,
2006), there is a lack of concrete guidelines for counselors
(Lev, 2004). In contrast to other rare phenomena of gender
development such as transsexuality, intersexual developments
still tend to be ignored and denied in curricula and textbooks of
clinical and counseling psychology. However, counseling work
with intersexual persons requires sound teaching and training to
become familiar with the variety of intersex conditions and to
acquire an understanding of the specific needs and experiences
of persons affected. The psychological issues to deal with are
manifold. Counseling work with intersexuals and their families
could include assisting them in finding a language to commu-
nicate the unusual experiences and decreasing emotional bur-
198 SCHWEIZER ET AL.
dens (e.g., Consortium on the Management of Disorders of Sex
Development in Childhood, 2006; Liao, 2003). Further, coun-
seling should be offered at different phases. In the beginning,
after finding out about the condition, it might help reduce
premature, perhaps irreversible medical treatment decisions by
supporting people in preparing and processing important deci-
sions through offering time and expertise. Later, counseling
could focus on themes and tasks that have been tackled in
research and counseling with nonintersexual clients. These
could involve building bridges to understanding and finding
one’s identity (e.g., Potoczniak, Aldea & DeBlaere, 2007) and
processing condition-specific and unspecific experiences such
as coping with stigma, difference and shame (e.g., Balsam &
Mohr, 2007; Van Vliet, 2008), sexuality and fertility (e.g.,
Bra¨hler & Goldschmidt, 1998), self-esteem, and coming out.
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Received March 5, 2008
Revision received July 29, 2008
Accepted July 29, 2008 䡲
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