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Intersex explained

11 March 2016, 16:47

If someone wants to clarify a person’s gender they can just ask them. It is sex (biological attributes) that Olympic committees are interested in, not gender.

A person’s sex is not always just a matter of their sex chromosomes (X and Y chromosomes). Sometimes problems can lead to a range of intersex conditions.

Intersex is a group of conditions where the physical structures to do with sex don’t show all the usual differences between male and female. There may be a difference between the external genitals (penis/vagina) and internal genitals (the testes/ovaries). The external genitalia may not look clearly male or female, or there may be other ways in which male and female physical structures are blurred.

Anne Fausto-Sterling suggests that the prevalence of intersex might be as high as 1.7%. (almost 1/50).

Intersex should not be confused with transsexualism or transgender where the person’s gender identity, the way he/she views himself/herself, is at odds with his/her physical sexual characteristics.

When a person discovers that they have an “intersex” condition, it can cause much distress since today’s society is generally intolerant of anything other than clearly male and clearly female.

Intersex can be divided, broadly, into four categories:

  • 46, XX Intersex
  • 46, XY Intersex
  • True Gonadal Intersex
  • Complex or Undetermined Intersex

46, XX Intersex
The person has the chromosomes and all the internal sex organs of a normal woman, but the genitals outside look male.

46, XY Intersex
The person has the chromosomes of a man, but the external genitals are:
a) Incompletely formed
b) Ambiguous (neither completely male or female)
c) Clearly female

Before birth, every baby can grow either a male or female reproductive system. Normally, after a few weeks, an XY foetus will form male genitals. This happens because of the male hormones (androgens) produced from the testes. The testes also make a hormone that stops female internal organs developing. However this does not always happen when the following occurs:

  • problems with the testes
  • problems with testosterone formation
  • problems with the body’s ability to recognise testosterone

Androgen insensitivity syndrome (AIS)
This is the most common cause of 46, XY intersex. This is due to problems with the body’s ability to recognise testosterone or male hormones (androgens). Without the influence of male hormones, the body type is female. Internally there are testes instead of a uterus and ovaries.

AIS can be divided into two groups:
1-Complete AIS (CAIS) - the genitals are completely female.
2- Partial AIS (PAIS). There are six categories from more male in form to ambiguous to female in form, depending on the degree of the body’s ability to recognise male hormones.

True Gonadal Intersex
(This used to be called hermaphroditism, but this term is outdated, incorrect and disliked by intersexed people – they are not hermaphrodites).

Here the person might have one ovary and one testis or ovotestes (mixed together). The sex chromosomes may be XX, XY, or both. The external genitals may look normal female or male or may look mixed.

Complex or undetermined Intersex Disorders
These include people with 45, XO, and 47, XXY, 47, XXX. These do not cause “intersex” (where there is difference between internal and external genitalia). Here there is no discrepancy between internal and external genitalia, chromosomal anomalies, etc. (as described above). However, there may be problems with sex hormone levels and sexual development.

Intersex is a taboo subject. Patients and parents are not always told the truth. It is something about which people keep very quiet. People who are intersexed have to struggle to get at the truth about themselves and often grow up with the sense there is something shameful about them. This is emotionally very harmful.

One needs to distinguish between gender – a social construct, gender identity – the way one views oneself, biological sex – anatomy (chromosomes, external genitalia, internal structures of reproduction, gonads, balance of hormones) and sexual orientation – attracted sexually to men, to women, to both or to neither.

Many with AIS feel and look like girls or women. However, it is difficult to assign a gender to many with genital ambiguity.

A person’s assumed gender is not always how it looks on the outside.

There are many cases where an intersexed person looks and feels like any other girl/woman until the person finds out something is different about them. Many people with AIS and CAIS fall into this category. The first time there is a realisation that they are not the same as other females may be during childhood if inguinal hernias arrive as a result of descending testes. However, it may be much later in life when they go to a gynaecologist to find out why they are not menstruating. Some women may leave this quite late in life.

Consider A’s story:
‘A’ is an African, the youngest of nine sisters. She went to a girl’s boarding school and as a teenager, became aware that she never got a period. She wasn’t ill, felt and looked like her friends and liked boys, just like everyone else. Life carried on and despite visits to her local doctor, she was not made aware that anything was different about her.

In her thirties she went to a new doctor in the U.S.A. After a few tests, the doctor became very excited that he had “found one”. “You are a boy!” he exclaimed. Imagine her surprise at being told this news! She has never been, and never will be, a boy. She has a good relationship with a long-time boyfriend and hopes to adopt children.

People like ‘A’ often suffer many emotional problems related to their shattered identity. There is also a risk of internal testes becoming malignant. If the testes have been removed, or if they are underdeveloped, HRT (hormone replacement therapy) is necessary. Calcium deficiency is a risk (due to low oestrogen levels), which must be monitored to prevent osteoporosis (soft bones that break easily).

The AIS support group in South Africa (saais@iafrica.com) was started to help put these women in touch with each other.

saais@iafrica.com (Angela co-ordinates this group for South African women and girls with AIS, CAIS and related disorders; Tel: 0828757230)
www.aissg.org (A U.K.-based website providing invaluable information)
www.intersex.org.za (Sally Gross provides support for intersexed people in South Africa)

- Angela, coordinator of the Androgen Insensitivity Syndrome (AIS) Support Group, October 2009

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