5 Tweens and Teens 129A DSD diagnosis during puberty creates a perceived loss of connection
with same-sex peers at a time when these relationships are instrumental to
identity development. Having learned from her doctor about all the reasons
why she is a girl unlike other girls, Molly may interpret the physical changes
that her peers experience, like breast and pubic hair growth, as indicators of
her difference. For this reason, settings like the locker room can be intensely
stressful, and many adolescent and even adult women with DSD who do not
menstruate worry about what to do if asked for a tampon. The importance
of pubertal changes affecting peer relationships is underscored by the fact
that DSD-affected teens who need to take hormones to go through puberty
tend to have more problems in peer relationships than those who go through
puberty on their own. Moreover, many people with DSD believe that they
will never meet someone like them, and though they may feel secure in their
gender identity, they may not be sure that they know how to be a woman
or man so unlike other women or men. These challenges may be greater for
people with DSD who do not identify with the gender assigned to them at
birth.
For many people, adolescence also marks a growing awareness of sexual
feelings, and the exploration of these feelings is a major aspect of adolescent
and human experience. People with DSD are no different; they feel sexual
desire, seek sexual relationships, and experience sexual pleasure. Sexuality can
be complicated for people with DSD in two major ways: physical and psycho-
logical. Some people with visible genital difference at birth may have infancy
and childhood surgeries in an attempt to “normalize” the appearance of the
genitals. Although surgical techniques have recently improved, many people
who have had genital surgery report impaired sexual sensation and enjoy-
ment. Some genital difference is managed nonsurgically; in cases like CAIS
where the vagina may be shorter than usual, some people use vaginal dilators
in anticipation of intercourse. Perhaps even more significant than the physi-
cal difference is the psychological impact of understanding that one’s body
is fundamentally different and may need to be “fixed” to be sexual. DSD can
therefore pose multiple barriers to sexual relationships. These barriers may
include a perceived need for intervention before expression of sexuality and a
belief that one is not sexually desirable. The rate of lesbian, gay, and bisexual
identification appear to be consistent with that in the general population, and
just as they may for typical teens, these experiences can additionally compli-
cate sexual expression for teens with DSD.
Although American culture does not typically prioritize procreation in
adolescence, many people understand puberty as preparation for family for-
mation, and conversations about teenage sexuality often focus on pregnancy
prevention. Similarly, girls and young women in particular are socialized to
anticipate motherhood from early childhood. People with DSD who are infer-
tile by virtue of the condition or surgical treatment often experience grief
about their infertility, usually at the point of diagnosis. Yet, it is common for
people who have known about their infertility from a younger age to experi-
ence a fresh sense of loss and grief in adulthood as their peers have children.
Otherwise, people with DSD who struggle with infertility are no different than
people without DSD who experience a loss of fertility, a nuanced discussion of
which is beyond the scope of this chapter.