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Last updated: Apr 25, 2022
6 min read

What does intersex mean? 

Disclaimer

If you have any medical questions or concerns, please talk to your healthcare provider. The articles on Health Guide are underpinned by peer-reviewed research and information drawn from medical societies and governmental agencies. However, they are not a substitute for professional medical advice, diagnosis, or treatment.

Intersex individuals are born with different combinations of genitals, sex organs, or chromosomes. But the term intersex is still confusing for a lot of people. 

Let’s look at what intersex means, some of the biological causes, and ethical issues involved.

What does intersex mean?

Intersex is an umbrella term that describes a range of sexual characteristics that don’t fit into typical definitions of what male and female bodies look like (UNFE, 2017).

Sometimes, intersex characteristics are obvious at birth. For example, some intersex babies are born with male and female genitals. Other times, it’s not clear that someone is intersex until they begin puberty. It’s also possible that being intersex is on a chromosomal level and not visible to the naked eye (UNFE, 2017).

It may surprise you how common being intersex is; it’s estimated that almost 2% of babies are born with intersex traits (Griffiths, 2018).

Intersex vs. transgender: are they the same thing?

No, intersex and transgender aren’t the same things. The term intersex refers to a person’s body. Transgender refers to how a person feels about their gender identity

A transgender person identifies with a gender that doesn’t match the anatomical one they were born with. An intersex person, on the other hand, is born with sexual anatomy that doesn’t match traditional male or female parts. 

Intersex people may later identify as transgender, or their gender may match their sex assigned at birth. So transgender and intersex may overlap, but the terms refer to different things (Carpenter, 2018).

Types of intersex

Classifying sexual identity is incredibly complex. There’s also an ongoing debate about whether sex and gender should be classified medically at all (Griffiths, 2018). 

However, different intersex types have been established for practical purposes. Each type is determined by the combination of an intersex person’s genitals, anatomy, and chromosomes. Let’s look at the differences between each type (Kaneshiro, 2021).

XX intersex

Sometimes called an intersex female, XX intersex refers to someone with female chromosomes and organs (ovaries, uterus, and fallopian tubes) but whose outside genitals are male. In this case, a baby’s labia are usually fused together and the clitoris is enlarged. This can sometimes look like a penis and scrotum. 

XY intersex

This type is essentially the opposite. An intersex male (XY intersex) is a person with male chromosomes whose outside genitals are incompletely formed, ambiguous, or female. Internally, they may or may not have healthy testes.

True gonadal intersex

To fall under this type, a person must have both testicular and ovarian tissue. This can come in many forms. They might be born with one ovary and one testicle, or the ovary might even be inside the testicle. 

External sex organs may look female, male, or appear ambiguous. The defining characteristic of true gonadal intersex is having both kinds of internal organs.

Complex or undetermined intersex

With this type, the person doesn’t have a discrepancy between their internal and external sex organs. Rather, they have an extra X or Y chromosome due to conditions like Turner syndrome and Klinefelter syndrome

Although their bodies fit the typical male or female mold, complex or undetermined intersex can affect sexual development and sex hormone levels later in life (Mehmood, 2021). 

What causes a person to be intersex?

It’s not totally clear what causes babies to be born intersex, but many theories suggest hormones are involved. 

Some types of intersex occur when the fetus is exposed to unusual amounts of estrogen or testosterone while in the womb. Certain medical conditions (like congenital adrenal hyperplasia) can alter the balance of a baby’s hormone production. It can also happen if the pregnant mother is exposed to agricultural chemicals (Kaneshiro, 2021).

What happens when a baby is born intersex?

If you or a loved one gives birth to a baby with unusual sexual characteristics, it can be confusing, surprising, and even distressing. Intersex is a complex issue, and parents often hope to help their child be healthy and happy while avoiding unnecessary surgery. 

Fortunately, a baby being born intersex isn’t typically a medical emergency. There is usually plenty of time to learn about the baby’s situation and choose the right next steps for your family. 

Intersex signs

Sometimes it’s obvious that a baby has intersex traits, and sometimes not. Signs a baby is intersex include (Kaneshiro, 2021):

  • Ambiguous or unusual genitals
  • A very small penis (micropenis)
  • A very large clitoris (clitoromegaly)
  • Labia that are connected or fused
  • Hypospadias (an opening on the penis somewhere other than the tip)
  • In girls, small masses in the groin, which may be testicles
  • Undescended testes in boys that aren’t seen on an ultrasound 

Intersex children who are older may show other signs like electrolyte imbalances, delayed puberty, or unexpected changes during puberty (Kaneshiro, 2021).

Intersex testing

Testing for chromosomal differences is an important early step when a baby is born with intersex traits or when a child begins to show signs of unusual sexual development. 

Knowing what chromosomes are involved helps parents know what to expect with their baby’s development. Some early tests for intersex traits include:

  • Chromosome analysis
  • MRIs, ultrasounds, or endoscopic exams
  • Hormone level testing
  • Hormone stimulation tests
  • Electrolyte tests

Is being intersex a medical problem? 

Since the beginning of human history, people have been born with sex characteristics that don’t fit typical male or female biological parts. Ancient Babylonians, Sumerians, Egyptians, and Greeks all depict people with intersex traits in art and mythology (Buyukunal, 2021). 

People who are intersex may develop medical issues or struggle with fertility, and some causes of intersex (such as congenital adrenal hyperplasia) can put one at risk for medical problems. However, being intersex typically doesn’t pose any health hazards. If medical intervention isn’t needed, most of those who are intersex lead healthy lives.

Intersex and fertility

Infertility is a common concern for parents with an intersex baby since sometimes sex organs don’t develop or function fully (Johnson, 2017). 

Ideally, fertility is considered while an intersex child is young before any medical interventions. If sex organs are changed via surgery or hormone treatments, they can be infertile (Johnson, 2016).  

Fortunately, there are many options for intersex people to have biological children. Depending on the type of intersex, fertility preservation measures (like freezing eggs or sperm) can be taken. 

New technologies can preserve early ovarian and testes tissue in children who haven’t hit puberty yet. With assistive reproductive technology, they may be able to successfully have children later in life (Johnson, 2016). 

Intersex surgery

Until recently, it was recommended that parents with an intersex baby born should choose their sex as quickly as possible. The baby would then undergo genital surgery and then be raised in that gender role. 

Theoretically, this helped intersex children avoid any emotional struggles that may come with having atypical genitals. Often, babies would be dubbed female as reconstructing genitals to create a vagina was thought to be easier (Kaneshiro, 2021).

We know now that choosing a gender for intersex children at birth doesn’t prevent emotional and identity challenges down the road. With a growing shift in medical culture and advocacy for intersex rights, babies are no longer operated on to fit them into a binary sex. 

Most healthcare professionals recommend waiting on medical intervention until the child is old enough to participate in the decision (Kaneshiro, 2021). If surgery is appropriate, a care plan will be created with the healthcare provider, parents, and ideally the child. The procedure depends on the child’s body and chromosomes.

Activism and intersex

It’s understandable to feel concerned about what life will be like for you or a loved one as an intersex person. People with intersex traits have been (and still are) subject to social rejection and violence due to false and harmful assumptions that being intersex is unnatural. 

There has been a huge wave of intersex awareness and education efforts to challenge this notion and promote intersex acceptance in recent years. For example, terms like hermaphrodite are considered outdated and offensive (Carpenter, 2016). 

Modern medicine has begun to prioritize both the medical wellness of the baby and respect for a child’s rights and emotional well-being. Having honest and supportive conversations can help you to understand some of the physical implications, needs, and issues of people with intersex traits. 

References

  1. Buyukunal, C., Zeller, K. A., Emre, S., & Nakayama, D. K. (2021). The history of surgery in disorders of sexual development. Journal of Pediatric Surgery, 56(2), 429-433. doi:10.1016/j.jpedsurg.2020.09.056. Retrieved from https://pubmed.ncbi.nlm.nih.gov/33384143/ 
  2. Carpenter, M. (2016). The human rights of intersex people: addressing harmful practices and rhetoric of change. Reproductive Health Matters, 24(47), 74-84. doi:10.1016/j.rhm.2016.06.003. Retrieved from https://www.tandfonline.com/doi/pdf/10.1016/j.rhm.2016.06.003?needAccess=true 
  3. Carpenter, M. (2018). The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia. Journal of Bioethical Inquiry, 15(4), 487-495. doi:10.1007/s11673-018-9855-8. Retrieved from https://pubmed.ncbi.nlm.nih.gov/29736897/ 
  4. Griffiths, D. A. (2018). Shifting syndromes: Sex chromosome variations and intersex classifications. Social Studies of Science, 48(1), 125–148. doi:10.1177/0306312718757081. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808814/ 
  5. ​​Johnson, E. K. & Finlayson, C. (2016). Preservation of fertility potential for gender and sex diverse individuals. Transgender Health, 1(1), 41–44. doi:10.1089/trgh.2015.0010. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5685253/ 
  6. Johnson, E. K., Rosoklija, I., Shurba, A., et al. (2017). Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making. Journal of Pediatric Urology, 13(4), 402-413. doi:10.1016/j.jpurol.2017.06.002. Retrieved from https://pubmed.ncbi.nlm.nih.gov/28713007/ 
  7. Kaneshiro, N. K. & Zieve, D. (2021). Intersex. MedlinePlus. Retrieved from https://medlineplus.gov/ency/article/001669.htm 
  8. Mehmood, K. T. & Rentea, R. M. (2021). Ambiguous genitalia and disorders of sexual differentiation. [Updated Spt 6, 2021]. StatPearls. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK557435/
  9. United Nations Human Rights. (2017). Intersex. Retrieved from https://www.unfe.org/wp-content/uploads/2017/05/UNFE-Intersex.pdf