Affirming Primary Carefor Intersex People
2020
INTRODUCTION
For nearly a decade, the National LGBT Health Education Centerhas been providing educational programs to health centers andother health care organizations with the goal of optimizing healthcare quality and eliminating health disparities for sexual and gender minority people. Recently, we and our parent organization,
The Fenway Institute, Fenway Health, have come to recognize theimperative to more actively include the health of intersex peoplein our mission and training programs. Therefore, all of our programs now use the acronym LGBTQIA+, which refers to lesbian,gay, bisexual, transgender, queer, intersex, asexual, and all sexualand gender minority people. As part of our commitment to supporting the health of all LGBTQIA+ people, we have written thefollowing community-informed clinical guide on primary care forintersex people. The guide provides an overview of intersex terms
and concepts, the health concerns of intersex people, intersex-affirming practices, and resources for further learning.

NATI ONAL LGBTQI A+ HEALTHEDUCATI ON CENTERTERMS AND CONCEPTS

What is Intersex?
Intersex is an umbrella term that refers to
those with a wide range of natural variationin sex characteristics and developmentthat falls outside traditional conceptionsof female or male. Although biological sex
has traditionally been seen as binary (female or male) in many cultures, the reality
is more complex. Variations may occur inthe chromosomes, external genitalia, gonads (testes or ovaries), hormone production, hormone responsiveness, internal reproductive organs, or any combination ofthese, among others.1

How Many People Are Intersex?
The percentage of people who are intersex depends on how intersex is defined.
If all variations of reproductive or sex
characteristics are included in the definition, experts say that approximately 1 in
58 people, or 1.7% of the population, is intersex.1 The frequency of specific intersex
traits varies widely; some traits are morecommon in certain areas of the world.

Terminology
Language related to intersex health iscomplex. Currently, the medical fielduses the terms differences of sex development (DSD) as well as intersex.2 Theterm diverse sex development has also
been cited in the literature.3 The DSD acronym originally referred to disorders ofsex development, but intersex community
members have made it clear that the term
disorders is pathologizing and demeaning.1,2 The outdated terms hermaphrodite,pseudohermaphrodite, and ambiguous
genitalia are experienced as stigmatizing
and hurtful; these terms should be avoided unless an intersex person asks you to
use them. Clinicians should also avoid
terms that describe a person’s anatomy
as defective or abnormal.
While some people in the community use
the terms intersex or difference of sex development, other people in the community prefer to use the specific name of theirdiagnosis.1,2 For clinicians, the best practice is always to mirror the term(s) yourpatients use, or ask them what they preferat the onset of the clinical relationship.

Common Intersex Variations
There are at least 40 recognized variations in sex characteristics.4 Not all variations are associated with a specific diagnosis. Some of the more common intersex
variations are shown in Table 1.

Table 1. Common Intersex Variations
Features of Common
Intersex Variations

CAIS (Complete
Androgen
Insensitivity
Syndrome)

Swyer
Syndrome(a form ofGonadalDysgenesis)

CAH(Congenital
AdrenalHyperplasia)

Klinefelter
Syndrome

Karyotype

XY

XY

XX

XXY

Gonad TypeInternal testes

StreakOvaries

External testes
smaller than
average;
Infertility iscommonSex Hormones
Naturally Produced
at Puberty

Testosterone
from testes
is average tohigh-averagefor typical male;high for typicalfemaleNone

Estrogen fromovaries; Above
average testosterone fromadrenal glands

Below average
testosterone
from testes;
Averageamount fromadrenal glands

Response to
Androgen

Convert toestrogen andfeminize

Virilize

Virilize

Virilize;
Some breast
development iscommonExternal Genital
Appearance*

Typical labia;
May have vagina
that is short

Typical labia

At birth may
have a range
of genital
variation

Often typical
penis Smaller
than averagetestesEstimated Frequency
for Live Births

1 to 2:100,0005

1:80,0006

1:15,0007

1:13008

We reference genitalia in this table for clinical purposes only. As discussed later in this guide, it isparticularly important to avoid pathologizing intersex people by focusing on genital appearance.

The “I” in LGBTQIA+
Increasingly, intersex is included under
the LGBTQIA+ umbrella. The alliance of
these communities arose from a sharedexperience of discrimination based on
harmful assumptions about gender andbiology. These communities are also
understudied in medical and behavioral
health research.9
All people, regardless of their sex characteristics, have a sexual orientation anda gender identity. In other words, sexual
orientation, gender identity, and sex development are distinct concepts. Sexual
orientation refers to how a person characterizes their emotional and physicalattraction to the same and/or other genders. Gender identity refers to a person’s
inner sense of being a girl/woman/female, boy/man/male, or something else.
Intersex describes a range of variations
in sex characteristics and development.
A majority of intersex people identify asheterosexual and cisgender (for definitions of LGBTQIA+ terms, see Glossary).10
However, research suggests that people
born with variations in sex characteristics
have an increased likelihood of identifying as a sexual minority (e.g., gay, lesbian,bisexual, pansexual, queer) or a genderminority (e.g., transgender, non-binary,gender fluid).11,12 Some intersex people
who are heterosexual and cisgender still
identify as part of the LGBTQIA+ community based on common marginalized
and/or stigmatized experiences. Liketransgender people, intersex people may
have a gender identity that does not correspond with their sex assigned at birthor gender of raising. In addition, becauseintersex people have sex characteristics
that transcend typical notions of female
and male bodies, they may experiencebarriers similar to transgender people
in accessing affirming health care that
respects their bodies, gender identities,
and physical needs.

If all variations ofreproductive orsex characteristics
are included in
the definition,
experts say thatapproximately 1 in
58 people, or 1.7%of the population,is intersex.

HEALTH-RELATED ISSUES AND NEEDS

Initial Recognition of Intersex
Variations
While some intersex variations are notedprenatally or at birth, many intersex traits
do not become apparent until puberty orlater in life. Below are common points at
which an intersex variation may be identified:• During a prenatal ultrasound• At the time of child’s birth, if genital
variation is identified• During care related to an inguinal
mass/hernia that leads to the discovery
of internal testes• At time of puberty, if pubertal changes do not occur, or if there are unexpected physical changes (e.g., virilization of an individual assigned female
sex at birth)• Incidentally during a laparoscopy for
another medical concern• During evaluation of an adult for infertility

Medical Trauma and Psychosocial
Health Needs

Medically unnecessary cosmetic
surgeries
Starting in the 1950s, the prevailing medical approach to treating intersex infants
and children emerged as an attempt to“correct” the appearance and function of
atypical genitalia. Surgeries also aimed
to prevent the possibility of a child growing up to have non-heterosexual relationships.3 Unfortunately, the practice of surgical “correction” continues in some U.S.
institutions and beyond.3 Often, families

feel pressured to consent to surgeries on
their child without being given sufficientmental health counseling, peer support,
or information on alternatives to surgery.3
The majority of these surgeries are not
medically necessary and can be delayed
until the individual can participate in thedecision. There is no evidence demonstrating the benefits of cosmetic genital
surgery to a child’s long-term mental or
physical health, nor is there evidence ofany risk to delaying the procedures until
the individual can decide if they wish tohave the surgery.1,11-15
In actuality, many intersex people experience multiple adverse side effects
from genital surgeries, including scarring,
chronic pain, loss of sensation, urinary andsexual dysfunction, and other complications that require repeated follow-up surgeries. Intersex people also report symptoms of post-traumatic stress disorder,
depression, feelings of loneliness, and fearof intimacy due to surgeries performed onthem before they were old enough to participate in the decision themselves.4 Furthermore, surgery performed at an early
age can assign a genital appearance that
does not align with the individual’s gender identity that emerges later.11
In recent years, intersex-led community
organizations have made great advances in raising awareness and promoting apatient- and family-centered long-term
management strategy that safely delays
surgery. Multiple human rights and medical professional societies have also issued
policies opposing medically unnecessary
surgeries on intersex infants.16 Despite thisprogress, some specialists in the U.S. andother countries continue to perform medically unnecessary genital surgeries on infants and young children.1,11

Unnecessary and Objectifying Medical
Examinations
Intersex people are often made to feellike medical curiosities. Adults reportlong-term emotional consequences fromrepeatedly undergoing intrusive, objectifying, and medically unnecessary genital examinations and photography as
children.3 Even today, some children still
undergo repetitive genital examinations
which are not necessary for their medicalcare.3
Providers should keep in mind that evena medically necessary genital examination can re-traumatize an intersex patient.
Prior to performing an exam, it is vital to
first establish a warm and respectful relationship with the patient, engage themin shared decision making about theirhealth, and use a trauma-informed approach (see below).
Providers must also avoid asking intrusive
questions not directly relevant to the patient’s presenting health concerns. Suchquestions reinforce shame, stigma, andfeelings of difference, and can exhausta patient who is tired of educating theirproviders. Importantly, providers should
not expect a patient to serve as a teacher
and should never ask a patient a question
simply to satisfy their own curiosity.
Finally, although it is important to teachstudents to care for intersex patients, providers must respect a patient’s refusal tobe observed by trainees and should neverinvite others to observe the patient unlessmedically necessary and specifically consented to by the patient.

Non-Disclosure
Another common practice that has
harmed intersex people and their families
is the concealment of information frompatients about their bodies.4 Concealing
information from intersex people (including youth) delays the process of self-acceptance and increases shame and stigma. When an intersex person eventuallylearns the truth, they may ask: “Why did
they hide this information from me unless there was something shameful about
my body?” Secrecy also perpetuates themyth that variations in sex characteristics
are extremely rare. In contrast, sharing information in an age-appropriate mannerenables people to process the information
and access peer support.17

Patients and their families need full disclosure of medical information and options
so they can make informed decisions thatare appropriate to the child’s developmental stage. Behavioral health providers
and intersex-affirming peer support organizations can help families learn to disclose information to their child in age-appropriate ways, and to share information
with extended family, babysitters, andothers who would benefit from learning
about the child’s variations. For adult intersex persons who only recently learnedof their diagnoses, primary care providers
can help them access medical records,
understand their medical history, andengage with mental health professionals
and peer support as needed to adjust to
their new reality.

Concealing information from intersex
people (including youth) delays theprocess of self-acceptance andincreases shame and stigma.

Specific medical needs

Compassionate, Trauma-Informed,
and Affirming Care

Overview of affirming primary care
The good news is that primary care providers can provide affirming and compassionate care for intersex patients andtheir families. To practice cultural humility
in interactions with intersex patients, it isimportant for clinicians to listen with sensitivity to their patients and acknowledge
that:• Sex development, like gender identity,
exists on a continuum• Human fetal development is complex;
variations in sex characteristics are an
expected and natural outcome of sex
development• An individual born with variations intheir sex characteristics may or may
not identify as intersex or as part of
the LGBTQIA+ community
While primary care providers are not expected to be intersex specialists, they stillrequire education in the basics of intersex
care. Resources for further learning areprovided at the end of this publication.

While many intersex people do not need
any specialized medical care, some require care at specific developmental junctures, and others have lifelong needs related to their individual variation. Primarycare providers can help individuals andfamilies find trusted referrals and navigate
specialized care.
Some common medical specialty careneeds include:• Steroid replacement for individuals
with combined adrenal gland/gonadal variations• Gynecologic, urologic, and sexual
health care, particularly to address any
complication created by prior surgicalprocedures• Hormone therapy to:o induce secondary sex characteristics, as desired by the individualo affirm gender identity if sex
assigned at birth does notcorrespond with gender identity
o replace sex hormones after
surgical removal of gonads• Prevention and treatment of osteoporosis• Cancer surveillance of internal gonads; some individuals/families may
elect to surgically remove the internal
gonads or gonadal streaks if there iselevated risk of malignant transformation relative to the general population; however, cancer risk may not bepresent; make sure to check updated
recommendations.

Making referrals
Ideally, intersex patients and their families
with specialty care needs have access toan integrated multidisciplinary team ofintersex-affirming medical and behavioral health clinicians who do not condone
medically unnecessary surgeries on infants. Unfortunately, finding culturally
sensitive clinicians with relevant expertiseis often challenging. Before referring patients to specialized centers, first inquireas to whether the facility affirms patientautonomy by delaying medically unnecessary interventions on intersex individuals
until the individual can meaningfully participate in the decision.If the facility performs interventions absent patient consent, attempt to find alternative centers. If
none are available, employ a harm-reduction approach to inform the patient and/or their family of their rights
To find referrals, it can be helpful to reachout to local and national leaders in the intersex community to ask about specialists
in the area (see interactadvocates.org/
resources/intersex-organizations). Oncea referral is made, it is important to checkin regularly with the patient/family to determine if they are satisfied with their specialty care or need further assistance.

Trauma-informed care
Because many intersex patients have experienced medical trauma, they may havea high level of anxiety and distrust whenvisiting a health care provider. A trauma-informed approach to care can help
put the patient at ease and reduce traumatic responses to health care. Trauma-informed care means that providers: areaware that many patients have a historyof trauma; understand the impact of trauma on a health and behaviors; recognize
the signs of trauma; help with recovery
from trauma; access care for themselvesto prevent secondary trauma; and resist
re-traumatization of the patient.18 An example of trauma-informed care would
be to recognize that an intersex patient
may experience a Pap test as traumatizing, ask the patient for permission before
performing the exam, and to suggest analternative, such as a self-swab, to resist
re-traumatization.19

Supporting psychosocial healthIn addition to providing trauma-informedcare, primary care providers can support
the psychosocial health of intersex patients and families by connecting them tointersex affirming mental health counseling and peer support groups. Professionalcounseling can help patients identify traumas and alleviate anxiety and depression
due to previous medical care. Counseling
may also help intersex patients explore
their concepts of self, bodily integrity,sex, and gender. This process can thensupport patients in making well-informed
decisions about their medical care andpossible intervention choices. Peer support groups can help normalize the experience of having an intersex variation,
provide guidance on patient-empowered
decision-making, and help patients andfamilies cope with and overcome stigma.
Peer support and psychosocial interventions can also help families communicate
more openly and provide developmentally appropriate information to their child as
they mature.9

Inclusive communication
A critical aspect of affirming care is to use inclusive language when communicatingwith all patients. Communication strategies include the following:• Ask patients for their sexual orientation, gender identity, names,and pronouns20,21
o Document the information in electronic health records
o Use a person’s chosen name and pronouns consistently acrossthe health centero Recheck frequently, as this information may change• Mirror the terms patients use to describe themselves, their body parts,and their diagnoses• Use gender-inclusive language and avoid gendered terms. For example,
instead of asking “Do you have a boyfriend?” ask “Are you in a relationship?”;
instead of requesting “Please remove your bra and panties,” say “Please remove
your undergarments”• Only ask questions relevant to the patient’s current health needs. Ask yourself:“What do I know? What more do I need to know to treat this patient? How can I
ask for the information I need to know in a sensitive way?”22• Ensure that communication is two-way, authentic, and active• Examine one’s own implicit and explicit biases about gender identity, gender
expression, and anatomy23• Participate in training sessions on LGBTQIA+ affirming health care to ensure you
are using current communication strategies and following up-to-date protocols
for LGBTQIA+ care
Using a cultural humility approach• Remain aware of the impact of trauma on the patient’s ability to engage
with medical providers• Acknowledge the potential hardship of failing to find specialists in intersexaffirming care
• Emphasize comprehensive informed consent when recommending any
procedure or treatment• Do not assume clinical training makes one an expert in the lived
experience of an intersex person• Respect the patient’s (or their family’s) right to refuse examination, observation,
or treatment, including observation by trainees when the primary purpose iseducational• Access current literature and continuing education opportunities on intersex
health (see Resources)

Specific recommendations across the life course

When caring for intersex infants,
children, and their families:• Discuss in a warm, positive, andmatter-of-fact manner that intersex
experience is more common thanpeople think• Recognize that families may haveexperienced medical trauma during
or immediately after the delivery of
their child• Assist families in finding and interacting with intersex-affirming tertiary carecenters or independent specialists,such as pediatric endocrinologists andbehavioral health professionals• Support families in their decisions torefuse medically unnecessary surgeries and other interventions until thechild is mature enough to provide fully informed consent• Help families access peer support• Stay positive about the child’s healthand future happiness• Recognize that gender assignment isprovisional• Do not be overly focused on thechild’s intersex features or genital appearance, but also do not avoid discussion of intersex characteristics altogethero As a child matures, their gender identity may or may notcorrespond to their sex assigned
at birth• Ask what pronouns to use when discussing the childo Use gender-inclusive terms like“your baby/child” if pronouns
are not yet choseno Do not choose a pronoun for thechild, and never use “it”

• Do not assume the child’s gender
expression will align with societal
gender norms, but also do not assume it will notWhen caring for intersex adolescentsthrough adulthood:• Anticipate the potential for strong
emotional reactions from the family
and patient if an adolescent’s body
does not develop as anticipated at
puberty• If a patient is concerned about confidentiality:
o Explain why the information isrelevant to the patient’s careo Explain clearly how medical information is kept confidential tothe extent required by law• Recognize that due to medical trauma, intersex youth are even more likely
than other youth to distrust medical
providers, miss appointments, andquestion medicationso Do not convey the message that
information regarding sex characteristics is inherently shamefuland should be hidden from others• Acknowledge that patients may feelanxiety if attending their first medical
visit without a parent/guardian• Do not assume a patient menstruates• Be mindful that in some families, parents almost always accompany theiradolescent and young adult children• Encourage patients to ask questions
and be curious about their bodies• Explain that a wide range of sexual
activity is normal and enjoyable• Do not assume the patient desires tohave heterosexual relationships• Promote patient-driven goals regarding gender-affirming care

• Discuss fertility preservation withpatients who may be interested inhaving biological children• Recognize that fertility options forsome intersex patients may be lessavailable than options for non-intersex patients and acknowledge otheravailable family building options• Screen for anxiety, depression, substance use, and suicidal ideation• Refer to intersex-affirming behavioral health care, peer support groups,
and other resources as neededPatient forms and questions• Review patient forms and questionnaires for inclusivity and sensitivity• Include questions on sexual orientation, gender identity, chosen names,and pronouns on registration forms11

Intersex-Affirming Health Care
Environment
Health centers can make simple yet valuable changes to the health care environment that will make for a more intersex-inclusive health care environment.

Anti-discrimination policies• Add language to policies to prohibit discrimination on the basis ofintersex status, intersex traits, differences of sex development, ordiversity in sex characteristics
Patients’ Bill of Rights• Empower patients to make autonomous decisions about their care
• Protect patients’ rights to privacy• Protect patients’ rights to refuse being examined, treated by, or observedby learners or trainees when the primary purpose is educational or informational and not therapeutic, without
their right to care being jeopardized• Protect patients’ rights to access their
medical records and to be told thetruth about their intersex status, intersex traits, and any related medical
information, including any history of
medical or surgical intervention1• Remove section headers for “female
only” or “male only” that assume certain anatomy or physiology
o Questions should be open to all
patients, with the option to check“not applicable” For example, “ifyou menstruate, date of last period”• Use intake forms that are then reviewed by the provider and patient todiscuss their existing external and internal reproductive organs in order tocreate an anatomical inventory• Avoid binary depictions of bodies
o Illustrations, such as pain diagrams, can be designed as a humanoutline without anatomical sex
characteristics• Revise questions that make assumptions about gender in relationshipso Ask about the gender(s) of sexual partners; include options for t
ransgender, non-binary, and additional genders
o Use gender-inclusive terms like“spouse” instead of “husband
or wife,” and “parent” instead of“mother and father”• Include questions about sexual desire
and function• Include a “not applicable” option for questions on menstruationand contraception• Provide opportunities for patients toindicate an interest in family building
options, such as adoption, surrogacy,
or fertility counseling and treatment

RESOURCES
Clinical Training and Tools
After decades of inattention, intersex-focused resources are being developed at a
rapidly increasing pace. Recommended resources include:• American Association of Medical College’s teaching videos: Teaching Differencesof Sex Development• interACT Advocates for Intersex Youth guidance books and brochures, such as
Intersex-Affirming Hospital Policies and What We Wish Our Doctors Knew
• National LGBT Health Education webinars: Caring for Intersex Patients at HealthCenters and Affirming Care for People with Intersex Traits• Recommendations for social workers: Applying Social Work Values to the Careand Treatment of Intersex People.
First-person individual and family accounts of the intersex experience are recommended
for clinicians interested in learning more about the personal impact of issues facing intersex people:• K.M. Zieselman, XOXY: A Memoir. Jessica Kingsley Publishers, 2020.
• S. and E. Lohman, Raising Rosie: Our Story of Raising an Intersex Child. Jessica
Kingsley Publishers, 2018.
In general, when seeking trainings and resources, consider whether the material was authored or co-authored by intersex-identified individuals, and/or whether an intersex-led
organization provided organizational oversight. Much as it would be inappropriate to produce a women’s care resource without consulting any women, intersex-focused materials
must reflect the voices of intersex people. To answer specific questions and provide vetted resources, many advocacy groups like interACT: Advocates for Intersex Youth havemedical advisory boards with trained professionals.

Peer and Family Support Groups and Tools
AISDSD.org (All intersex variations; changing name to “InterConnect”)
HEAInfo.org (Hypospadias and Epispadias)
BeautifulYouMRKH.org (MRKH)
Supporting your intersex child: A parent’s toolkit by OII Europe
What We Wish our Parents Knew (All intersex variations)

SUMMARY
Intersex refers to the nearly two percent of the population with a natural variation insex characteristics that falls outside traditional conceptions of female or male bodies.
Some, but not all, intersex people identify as part of the LGBTQIA+ community. Manyintersex people have experienced trauma from medical interventions, including surgeries
and repeated genital exams performed on them as children without their consent or evenknowledge of their own variation. Providing affirming and compassionate primary care tointersex patients and their families therefore requires using a trauma-informed approachand following inclusive communication strategies, as recommended for all LGBTQIA+
populations. In addition, providers can educate themselves in the basics of intersex care,and provide well-vetted referrals to behavioral health providers, peer support groups, andmedical specialists, as needed.

ACKNOWLEDGMENTS
Thank you to the following people whose program presentations formed the basis
for this publication:• Susan E. Stred, MD, Clinical Professor Emeritus of Pediatrics, SUNY Upstate
Medical University, Syracuse NY• Kimberly M. Zieselman, JD, Intersex woman and Executive Director, interAC
Thank you also to AIesdair H. Ittelson, JD, interACT Law and Policy Director,
for reviewing this publication.

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This publication was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part ofan award totaling $449,985.00 with 0 percentage financed with non-governmental
sources. The contents are those of the author(s) and do not necessarily represent
the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government.
For more information, please visit HRSA.gov.