Index – in this article you will find the following information:
- What is intersexuality?
- Nomenclature: why should the term hermaphrodite be avoided?
- Pseudo-hermaphrodite and true hermaphrodite
- What is gender identity?
- Relationship between chromosomes and intersexuality
- Intersex conditions
- Symptoms
- Diagnosis
- Is there a cure?
- Treatments
- Living with intersexuality
- Prognosis
- Complications
- Is there prevention?
- Common questions
Nomenclature: why should the term hermaphrodite be avoided?
For a long time the term hermaphroditism has been used to refer to intersex people. However, it has been criticized and has fallen into disuse. There are some reasons for this to happen, such as, for example, the suffix “ism”.
Intersexuality is not a pathology and that is why using the word hermaphroditism can be very offensive. Only the term hermaphrodite also does not represent what intersexuality is, as it sums up the condition to a purely physical issue.
Hermaphrodite was a Greek god, son of Hermes and Aphrodite. According to mythology, Hermaphrodite would have been born a boy, but he became an androgynous being (female and male characteristics) when his body was united to that of the nymph Salmacis. From then on, he started to have physical characteristics of a man and a woman, in addition to an indefinite gender.
The term hermaphrodite is born from this legend and is used to refer to various beings or animals that have sexual organs of both sexes, such as some plants and invertebrate animals.
When it comes to human beings, it is different. Intersexuality is not something that boils down to physical characteristics, because it is caused by biological differentiation .
There are people who are born with the appearance of a male person, recognize themselves within that gender and have a corresponding reproductive system, for example, and even then they can be intersex for a chromosomal or hormonal issue.
These people would not be hermaphrodited by the logic attributed to the word. For people who have ambiguous genitalia, the term is stigmatizing.
Some clinical diagnoses use the term, as in the case of reports such as pseudo-hermaphrodites and true hermaphrodites.
But even in a medical setting, upgrading to a more comprehensive name was necessary. Within the last few decades there has been a leap in genetic knowledge about how sex determination occurs.
With this new knowledge, the translation into terms like “hermaphrodite” or “intersex”, the latter more accepted, seemed unusual for clinical practice.
Recently, then, the term Sexual Development Disorder (DSD) was introduced to the discussion. For doctors, this name represents a more individualized, scientific and broad treatment of the condition.
Pseudo-hermaphrodite and true hermaphrodite
These terms refer to the condition in which people are born with two genitals, presenting both male and female genitals (ambiguous genitalia).
Although the term “hermaphrodite” is no longer used to refer to intersex people, in these two cases the name is common.
The true hermaphrodite, therefore, is a condition in which the individual is born with well-formed male and female organs, internal and external. However, usually only one develops. In rare cases, normal development of both genitals can occur.
In most cases of true hermaphroditism, the individual has XX sex chromosomes.
In the case of pseudo-hermaphroditism, a condition also known as ambiguous genitalia, there is a division between female and male pseudo-hermaphroditism.
In cases of male pseudohermaphroditism, the person is born with female genitalia, but without ovaries and uterus. There is also, in this condition, the presence of testicles housed within the pelvic cavity.
In adolescence, female characteristics may develop, such as breast growth.
In female pseudohermaphroditism, on the other hand, the child is born with the ovaries, but the external genitalia is considered male, due to the shape of the clitoris, which normally resembles the penis.
People with this condition may have excess hair, beard development and an absence of menstrual cycle. In both forms, treatment can be performed with hormone replacement and surgery.
What is gender identity?
In the discussion about intersexuality, it is common to hear about gender identity as well, because many times, intersex people do not recognize themselves in the assigned gender, due to the surgeries performed as babies.
Gender identity, according to UN definitions, refers to the experience of each individual with their own gender. It is a question related to the way people see themselves and present themselves to other people.
In this sense, there are people who identify with the masculine, feminine gender, with the two or even none.
There are several in-depth studies on gender issues and authors who are references on the subject, such as Simone de Beauvoir and Judith Butler, which provide further reflection on the topic.
For Judith Butler, for example, gender must be recognized by the individual himself, but this is not a choice, in fact, but a constructed process.
For this author, because it is such a complex subject, it is difficult to reduce gender to just male or female binarism.
This issue is present in intersexuality, as it is still common to associate gender to biological sex, an issue that excludes different gender manifestations, such as transsexual people, for example.
Relationship between chromosomes and intersexuality
Chromosomes are structures responsible for defining the physical characteristics of each individual, as they are composed of DNA, with chromosomes in group 46 being responsible for sexual characteristics.
People who are not intersex, always present 46 XX and 46 XY chromosomes for men.
However, when it comes to an intersex person, this chromosomal combination can have several variations. Some examples are XXY, XYY, XXX, X0, XX / X0, XX / XY or XY / X0.
All of these versions are responsible for intersex bodies. Other characteristics arise from a chromosomal issue, such as the following:
Phenotype
When we talk about phenotype we are referring to all the physical characteristics of someone, such as skin color, hair and eyes. These are characteristics determined by chromosomes.
Like all of these aspects, sexual characteristics are also a phenotypic response to the combination of chromosomes.
Therefore, the aspects that today are understood as boys or girls develop from a genetic combination, such as the development of the breasts, low voice, muscle mass and beard distribution, for example. In intersex people, these characteristics can be mixed or absent.
Hormones
Our body is responsible for the production of various types of hormones and each of them has a function. Two of them are fundamental for the development of body characteristics associated with biological sex: estrogen and androgen.
Estrogen is responsible for the development of characteristics considered to be feminine, such as the development of the breasts, the development of the broader hips and the distribution of fat.
Androgen hormones are responsible for characteristics such as a beard, a thick voice and broader shoulders and chest.
They are produced in greater quantity by the testicles and the ovaries, however, in intersex people, this production can happen together or separately.
In some cases, the production of these hormones is low or absent, which can lead to a need for hormone replacement drugs.
Genital
Usually, it is the characteristics of the genitals that are taken into account for the designation of biological sex when a baby is born.
Since prenatal care, what defines a boy or a girl is the analysis of images that show whether there is the presence of a female or male genitalia.
For a long time, the thought remained that a person with a penis is automatically someone male, as well as someone with a vagina, which by binary logic, should be considered female.
This more simplistic classification, however, is staying in the past, since gender discussions are becoming more viable and clarified.
In the case of intersex people, the genital characteristics present external and internal variations. Just as there is an ambiguous genitalia, there are also people with two different and complete genitals in the same body.
For example, there are intersex people with the presence of a penis and ovaries or with ovaries and testicles, which can be functional and healthy.
Although they are different from what is common or normal, these are not considered sick bodies.
Intersex conditions
There are several conditions that can be the cause of intersexuality. Most are related to a genetic dysfunction that still occurs in the baby’s formation. Several factors influence this process, such as:
Agenesis
Agenesis means the complete or partial absence of an organ. It can also be characterized as a form of atrophy. In intersexuality, there is penile, gonadal (ovaries and testicles) or vaginal agenesis.
5-alpha reductase deficiency
5-alpha reductase is an enzyme that converts testosterone to dihydrotestosterone (DHT), a different and more potent type of testosterone.
DHT is important during embryogenesis, in the process of sexual differentiation of the male genitals. It also plays a role in the maturation of the penis and testicles during puberty, in the growth of facial hair, pubic and body regions.
Dysgenesis
Gonadal dysgenesis is a disorder that occurs in the development of the testicles or ovaries. It can happen in people with chromosomal set (karyotype) XX and XY, in this case it is considered pure gonadal dysgenesis.
With dysgenesis, the production of sex hormones is impaired. It can cause the absence of menstruation (amenorrhea) and sexual infantilism.
Hypogonadism
Hypogonadism is a condition in which the testicles or ovaries do not produce or produce sex hormones in very low quantities. People with hypogonadism may be absent from puberty or have infertility.
In cases of hypogonadism, people may also have an undeveloped sexual organ.
La Chapelle syndrome
La Chapelle syndrome, or Man XX syndrome, is a rare genetic condition in which the person with the XX chromosome combination develops male genitals.
Klinefelter syndrome
Klinefelter syndrome is a genetic condition in which the individual is born with an extra X chromosome. It is also known as Syndrome 47 or XXY.
In this syndrome, the individual is born with smaller testicles and, after puberty, ejaculation does not contain sperm.
The physical characteristics of people with this syndrome can vary, but normally boys do not show the development of a lot of body hair. In some cases, breast development may occur.
People who are born with this syndrome and wish to have the most present male characteristics can undergo hormonal treatment.
However, even though there are people in this condition who grow up as boys and identify with this gender identity, there are also cases of people who identify with the female gender, which requires different treatment, when this is desired.
Turner syndrome
Condition in which the person is born with female biological sex, but only with an X chromosome.
Congenital adrenal hyperplasia
Congenital adrenal hyperplasia (CAH) is a genetic disease that causes disorders in the functioning of the adrenal glands, which are fundamental glands in the production of various hormones.
In children who have not been diagnosed and treated, some clinical manifestations can occur, such as the development of male characteristics.
Even before birth, due to the excess of androgen hormones caused by CAH, the child may be born with already virilized external genitalia. It is estimated that this condition is the cause of 90% of cases of intersexuality.
Androgen insensitivity syndrome (Morris syndrome)
Androgen insensitivity syndrome (AIS), also known as Morris syndrome, occurs due to a genetic defect on the X chromosome. It is a condition, in most cases, hereditary, and in rare cases caused by spontaneous mutations.
The main characteristic of this disease is the sensitivity of the body’s cells to the stimuli that the androgen hormone causes, such as male physical characteristics. This sensitivity can manifest itself in different degrees, being partial in some cases.
When it is a case of AIS of complete sensitivity, in which the individual has 46 XY chromosomes, there is no development of the testicles during pregnancy.
Therefore, the production of testosterone and anti-Mullerian hormone (AMH) (hormone related to testicular function) is impaired.
Other variations recognized in newborns with this syndrome are the short or almost absent vagina.
When the diagnosis occurs at birth, doctors usually opt for surgery to remove the testicles. Vaginoplasty, a surgery performed to increase the size of the vagina, is also a procedure performed in children with this syndrome.
Without the removal of the testicles, during puberty, they may produce testosterone, due to stimuli from the pituitary gland.
In this way, testosterone is converted to estrogen and people who have androgen insensitivity syndrome may experience breast growth, but without the development of pubic hair or armpits.
Symptoms
Intersexuality has no symptoms, as it is not considered a pathological condition. What can be interpreted as a symptom are the chromosomal variations when comparing the physical characteristics of the person.
During puberty, it is possible that some changes may occur, such as the late development of common features at this stage, such as the development of the breasts and the growth of pubic hair and beard, for example. Some intersex people may also not go through this period.
For these reasons, the discovery of intersexuality can happen in two main moments. The first one occurs at birth, when it is possible for the doctor to identify some evident genital differentiation, such as ambiguous genitalia.
The second possibility is the late discovery, in which the intersex person does not present changes characteristic of moments such as puberty.
Diagnosis
Finding an intersex person can be tricky. Some people live to have an idea of this condition, as there is not always an external phenotypic characteristic developed.
On the other hand, for many people, this diagnosis comes right after delivery. And in these cases, the sequence of this discovery is not always considered a correct process, as the surgeries performed on newborns are seen as a form of mutilation for many intersex people. This is one of the struggles of activism within this group.
However, if a person suspects that he or she is intersex, he or she may look for a general practitioner, endocrinologist or geneticist to perform some specific tests.
In order to have an accurate diagnosis, some exams are necessary, such as:
Ultrasound
The ultrasound or magnetic resonance exam is done to assess the presence of internal organs, such as the uterus and fallopian tubes.
In these cases, pelvic ultrasound or a variation of this type of ultrasound can be done, called transvaginal ultrasonography, an examination that uses a small device that is inserted into the vagina.
This type of ultrasound should be done according to medical advice, in a hospital or specialized laboratory.
Karyotype
The karyotype exam is done to identify and analyze the chromosomes of each individual, so that it is possible to track possible changes, whether structural or numerical.
To make this possible, a cell culture is performed, a technique that uses a sample of certain cells in the organism and isolates them in an artificial environment ( in vitro ).
In addition to this cell culture, which allows cell division, there is also a chromosome staining process to identify possible changes.
This test is important for the diagnosis of genetic diseases, as it works as a kind of photograph of the entire length of the chromosome.
Hormonal dosing and hormonal stimulus testing
The tests to measure the amount of estrogen and androgen hormones are important to understand if what is happening is a low production of one of them and, together with the other tests, to understand the cause.
Hormonal stimulus tests, for example, help to diagnose conditions such as Androgenic Insensitivity Syndrome and Klinefelter Syndrome.
Endoscopic examination
Exam used to check for the absence or presence of the vagina or cervix. One of the types of endoscopy that helps in diagnosing changes in the uterus, for example, is hysteroscopy .
Is there a cure?
Intersexuality has no cure, as it is not considered a disease . There are, however, attempts to “normalize”, in which genital surgical procedures and hormone replacement are made so that these people can fit into the known biological sexes, female or male.
The big challenge in this issue is the need for these procedures and when they should be done. Some intersex people label clinical procedures performed on newborns as a form of mutilation.
Often, intersex people only discover that they have undergone some surgery at birth when they are in their teens or adulthood.
Treatments
Intersex people do not need treatments to cure this condition, as seen earlier. What we can call treatment is the necessary care for the patient’s health as a whole, being physical and mental.
This patient-centered treatment requires an interdisciplinary team, such as monitoring by an endocrinologist, psychologist, surgeon (for sexual reassignment) or plastic surgery.
For a long time it was believed that the best option for these patients would be surgery and hormonal treatment right after birth, attributing to the parents an extremely important decision that is up to the child.
That thought is changing little by little. There are still many cases where sexual reassignment is done in children without it being their choice, but many doctors already understand that this involves issues other than biological sex.
Thus, treatments for intersex people should be done when there is a risk to health .
In relation to physical changes, such as sex reassignment surgery, hormone replacement and plastic surgery, decisions can be made by the child, when the child has the means to make that decision.
Meanwhile, the intersex person and also family members must maintain a routine of psychological monitoring and medical guidance, to prevent the child’s health.
Living with intersexuality
Although it is not a disease, being an intersex person also requires learning to be able to live with the condition.
When a person is born different, it is necessary a structure that welcomes them and does not discriminate against them. This is not always possible, as it is necessary to fight against prejudice and the lack of information.
Deal with prejudice
One of the main obstacles in the lives of intersex people is prejudice. Many people do not understand what intersexuality means and associate it with stereotypes, marginalize and underestimate the group’s struggles.
It is not easy to face the discrimination of others, mainly due to the lack of information. Gradually, the topic has been on the agenda in the media. However, it still does not reach all people efficiently.
To be able to face the prejudice, the accompaniment with a psychologist, meeting with a group of intersex people and information that help you to have clarification about your condition can help.
Find groups
One way to tackle prejudice is to reach out to a group of intersex people and talk to people who have or have had the same experience.
In social networks there are some groups that provide information and exchange reports about the experience of an intersex person. For people close to an intersex child it is also very valid.
Search for information
Seeking information about what intersexuality is, understanding the struggles for rights and understanding this reality is a fundamental step for anyone, not just for intersex people and their families.
During this process of coexistence, or acceptance, it is essential to understand intersexuality and contribute so that more people have access to information and claims.
Prognosis
The prognosis for intersex people involves perspectives on how doctors and family members should proceed with the birth of an intersex baby, so that he can later decide on his own body.
Complications
Just like any individual, intersex people can also have health problems that need special treatment, with serious complications or not.
A large part of this group has healthy bodies, with some exceptions, as in cases of people with congenital adrenal hyperplasia and 21-hydroxylase enzyme deficiency, for example.
This condition may require immediate treatment with corticosteroid medications to prevent the child from being at risk of life when there is excessive loss of salt.
However, surgeries and procedures performed on newborns can lead to a number of complications:
- Chronic pain;
- Infertility;
- Urinary incontinence;
- Loss of sexual sensitivity;
- Depression;
- Anxiety.
Is there prevention?
Intersexuality is a condition that occurs due to chromosomal, genetic and hormonal variations and cannot be prevented.
Common questions
Intersex people struggle to end surgery on newborns. What are the reasons?
Biological sex and gender identity are different things, but for a long time the thought that the two concepts were synonymous has long been perpetuated. Within this logic, it would be understandable to consider surgery in children with ambiguous genitalia, as it would not interfere in the future in relation to their identity, but this is not how it works .
The decision to have a surgical procedure or hormone replacement treatment, which will interfere with a child’s biological sex, is a very complex issue. It is complex for parents, for doctors, but especially for the child.
Intersex people argue that this “treatment” should be done by the individual’s choice, when they are old and mature enough on this issue.
One of the justifications for the surgery to be postponed or even not performed is because, many times, babies who undergo surgery when newborns do not identify with the assigned gender.
Thus, doctors and guardians of the child should initiate a process of welcoming and guidance, so that in the future they could choose that decision.
Is there a country that prohibits genital surgery in intersex children?
Yes. In April 2015, Malta, a country located in the Maltese Islands in southern Europe, became the first country to ban non-consensual medical interventions to try to “normalize” any body, including those of intersex people.
At the III National Intersex Forum, an event that brought together more than 30 organizations from around the world, the declaration of Malta was born, where the list of interventions was made to ensure the rights of intersexuals.
Some items present in this statement are:
- End unnecessary medical interventions and without consensus, in an attempt to transform the bodies into female or male;
- End infanticide, selective abortion and genetic selection;
- Respect intersex people, their different sexual orientations, gender identities and gender expression;
- Do not assume that all intersex people belong to a third gender. There are intersex people who identify with the sex legally assigned at birth and others who do not;
- Recognize the political priorities of intersex people;
- Provide employment and leadership opportunities to intersex people.
How does the legislation in Brazil in relation to surgeries work?
In Brazil, there is still no legislation specifically addressing this issue. However, the Federal Council of Medicine (CFM) has a resolution (Resolution 1,664) for these cases.
According to the CFM, children who are born with undetermined sex should be treated as a medical and social emergency.
To understand what intersexuality is, it is necessary to let go of a binary norm, of which there is only the feminine and the masculine. When it comes to body variations, it’s not that black and white.
Intersexuality is the nomenclature used for variations in sexual development, responsible for bodies that do not fit the designation of man or woman or male and female.
We seek in this article to clarify what is intersexuality. We hope we have helped to clear your doubts. Share this information so that more people can get to know the topic. Thanks for reading!
