by Lexi Breen
The author has had gender incongruence all her life but only found out she was intersex, having XXY chromosomes at 50. However, this knowledge explained and validated much of how she felt throughout her life.
An older idea of intersex people having truly ambiguous genitals only applies to a small percentage of the whole group. It is also highly unlikely for someone to have both sets of genitalia, as the clitoris and penis are formed from the same tissue: so, you can’t have both. For the first 6 weeks of foetal development the sex organs of humans are the same. Then a complex interaction of genetics and hormones, shapes the person we become.
Intersex people are individuals with sex characteristics such as sex chromosomes, gonads, internal and/or external reproductive organs, which do not fit the typical binary views of male or female bodies. Intersex people will have a mixture of primary and secondary sexual characteristics usually attributed to males and/or females but are in themselves not always ambiguous. The differences can be so minor these are often passed off as ‘normal’ variations. Consequently, many people, like the author, only find out later in life or not at all that they are intersex.
Other terminology, such as disorders / differences of sex development (DSD), variations of sexual characteristics (VSC) and ambiguous genitalia, have been criticised as being too medical. It is estimated that up to 1.7% of the world population may be intersex, however this uses a very broad definition of the term.
There are over 50 different intersex variations ranging from conditions like partial androgen insensitivity syndrome (PAIS) that only affects around 1:100,000 people to relatively common conditions such as hypospadias which affects 1:150 people.
As some Intersex variations are rare and people who have them are often reluctant to come forward, research in this area is difficult. Most studies are based on individuals who seek medical care as they are more visible members of this community. However, they may not be representative of the whole diversity of the community.
The 2021 Census for England and Wales recorded 51% of the population were women and girls and 49% were Men and boys. Only a binary choice was given as it was believed that the number of Intersex people was so low as not to be statistically significant. For gender identity, 262,000 people didn’t identify as their gender assigned at birth, which is 0.5% of the population aged 16 and over. Of those roughly 0.1% each identified as a trans man or woman, 0.06% as non-binary and 0.04% as another gender, 0.24% answered “No” but did not elaborate and 6% of the population did not answer this optional question.
In another study 0.03% of over 7 million patients across the UK, between 2000 and 2018 identified themselves to their GPs as transgender. This is significantly lower than the figures suggested by the 2021 census and may indicate the difference between having an inner sense of a different gender, the incidence of gender dysphoria and the desire to medically transition, hence the involvement of general practitioners.
A study of nearly 1000 intersex participants across 14 European centres showed 5% had transitioned compared to that reported for primary care in the UK of 0.03%. There are several factors that need to be considered as these people were being actively treated by specialists in their own countries, where culture and access to healthcare may differ from the UK. Transgender people in general may have problems accessing health care in the UK and are often subject to exclusion, discrimination and stigma including in healthcare settings. Regardless of these factors the difference is significant.
Another study looked at the gender incongruence in over 1100 people with six different intersex variations, in some groups more than half had gender incongruence.
However, in this research they omitted individuals with Klinefelter Syndrome who have an XXY chromosomal pattern, this is one of the most common intersex variations. It was believed that as they didn’t have ambiguous genitals, they wouldn’t experience gender incongruence. This view failed to understand the impact of the presence of secondary sexual characteristics and genetic differences.
Other than gender incongruence many intersex variations come with associated health problems such as infertility so if you think you may be intersex it is well worth speaking to your doctor.
Further information on intersex variations can be found at https://interactadvocates.org/wp-content/uploads/2022/10/Intersex-Variations-Glossary.pdf
Lexi Breen is a Transgender and Intersex Advocate, a Trustee of Interconnected UK and the Klinefelter Syndrome Association (both intersex charities), a member of BAGIS and WPATH and a Senior lecturer for the School of Health and Care Sciences, University of Lincoln.
She can be contacted at Lexi@interconnecteduk.org