There are people who cannot be clearly assigned to any gender. They carry characteristics of both sexes and fall under the term intersexuality. In Greek mythology, they were called hermaphrodites.
What is intersexuality?
The term intersexuality stands for a constellation in which physical predispositions for both sexes are found in people and therefore they cannot be clearly assigned to one sex. The vernacular speaks of hermaphrodites. There are different manifestations: Women or girls may look like a woman on the outside, but may lack a uterus, ovaries and fallopian tubes on the inside. Men may appear like men on the outside, but they may lack male hormone production and appear more feminine on the outside. It is also possible that the vagina or penis may be inadequately formed. Often the term intersexuality is confused with transsexuality, but transsexuals, unlike intersexuals, belong to a particular gender, just don’t really feel comfortable in it.
Causes
There are several causes of ambiguous gender assignment. Intersexuality is mainly due to chromosomal changes. Known effects of chromosomal alteration include Turner syndrome in females and Klinefelter syndrome in males. Another possible cause may be a disorder in the development of the gonads, where germ cells and sex hormones are produced, in the ovaries in women and in the testes in men. Impaired function can also promote intersexuality, because then not enough sex hormones are produced. When a germ cell contains male and female anlagen, sperm and eggs are produced (ovotestis). Hormone disorders affecting germ cells or chromosomes are also possible causes. In addition, disorders of kidney function or enzyme damage may be responsible for intersexuality.
Symptoms, complaints and signs
Just as there are different causes of intersexuality, the signs also vary. In general, men have 22 pairs of chromosomes and one X and one Y chromosome, while women have two X chromosomes. If there is defective sperm production and a sperm with expressions of both sexes fertilizes an egg, this can develop into X0 people who are missing a sex chromosome. If an X chromosome is present, this results in a woman, but she cannot have children. Medicine then speaks of Turner syndrome. If the sex chromosomes do not separate when the sperm matures, the father inherits two sex chromosomes to the child. Together with the X chromosome inherited from the mother, the child then has two X and one Y chromosome. This expression is called Klinefelter syndrome. If the Y chromosome is dominant, these individuals are male but have limited testosterone production, smaller testes, and are not fertile. With a normal set of chromosomes and androgen resistance, infertility may occur and beard growth and body hair may be reduced. In cases of complete androgen resistance, male reproductive organs cannot form properly. In these cases, the testicles remain in the body, a vagina is present on the outside, but no uterus, ovaries or fallopian tubes are present inside the body. Purely externally, affected individuals nevertheless look like women.
Diagnosis and course
Most often, the diagnosis of intersexuality is an incidental finding. If signs suggest a suspicion of intersexuality, the blood is examined at the beginning with a determination of the hormone status and an examination of the chromosome set. In addition, an ultrasound examination of the abdominal and pelvic cavity is performed to find out whether a uterus, ovaries and fallopian tubes are present in the pelvis. A special X-ray examination, a genitogram, is performed to see if a vagina is formed. Sometimes a biopsy of the gonads must also be done to see what tissue is in the gonads. This biopsy is performed in a hospital under anesthesia. Extensive diagnostics in case of intersexuality enables a prognosis with regard to a possible infertility and also facilitates the decision with which sex affected persons want to live, whether a treatment is necessary.
Complications
Along with the fact that in most Western cultures a naturally given binary gender system is assumed, intersexuality itself is often already considered a complication. Here doctors and partly also parents are involved to take the adaptive measures to establish a well-being for the affected person. Accordingly, there are several consequences for the intersexual person: by the intervention in early childhood an external gender is forced on him. This can lead to an identity crisis in later years and in the course of the psychosexual development of the affected person. If the assigned gender and the perceived gender do not match, a binary understanding of gender additionally indicates a form of transsexuality, which can have far-reaching psychological (and possibly surgical) consequences. The medical nomenclature excludes a transsexuality under the condition that this would be accompanied by a biologically clear sex, however, in the case of intersexuality, which complicates the handling of affected persons with themselves and doctors once again. Also further conceptual barriers complicate the everyday life of intersexuals. Due to bureaucratic and cultural factors, the compulsory assignment of a gender is widespread. Since this may not correspond to the self-perception of the affected person, conceptual difficulties arise, which can be psychologically stressful. While intersexuality, with the exception of frequent infertility, does not lead to physical complications in the sense of discomfort, the complications are mostly social in nature. Lack of tolerance, acceptance and education of many social circles have a consistently negative effect on the psyche and self-perception of many intersexual people, who are often forced into a gender role by their environment. Autodestructive behaviors, as well as depression, are more prevalent among intersex people than among gender-ambiguous people.
When should you see a doctor?
Because there are many different forms of intersexuality, it is not possible to give a single answer to this question. In general, it is strongly advised to see a doctor, but the appropriate time varies from individual to individual. In many cases intersexuality is detected anyway by the ambiguous genital status either directly after birth or by the pediatrician. On the other hand, there are also affected persons who are only noticed from adolescence onwards, for example due to the absence of menstruation. Basically, parents should consult the pediatrician or a specialist when the first uncertainties or suspicions of a possible intersexuality arise. Only in this way possible diagnostic, therapeutic or surgical measures can be taken at an early stage. Thus, it is the wish of many affected persons to have their external sex surgically adjusted. Although an intersexuality itself is not to be regarded as pathological and does not always require a complex medical treatment, it can sometimes be based on a serious underlying disease. In rare cases, such as adrenal cortical hypofunction, rapid medical treatment is necessary. For this reason, it is recommended to consult a doctor as soon as possible signs of intersexuality are noticed.
Treatment and therapy
In the 1960s and 1970s, children diagnosed with intersexuality at birth underwent surgical sex correction shortly after birth, followed by hormone treatment. However, these treatments often had serious consequences, including infertility. Doctors were not yet sufficiently enlightened and many operations proved to be unnecessary in retrospect. Today, medicine views gender correction surgeries rather critically. If the sex is not clear, parents are now allowed to decide on the future gender orientation. Since 2009, it has also been possible to issue a birth certificate without unambiguous sex determination. This allows affected children to decide for themselves later on their gender orientation. Nowadays, therapies are individually tailored. The focus is not on gender reassignment, but on stabilizing the psychological state with regard to the existing physical conditions.Many intersexual people advocate not to consider intersexuality as a disease, but as an additional manifestation of a normal gender development. They also do not necessarily experience therapy as helpful, but rather as discriminatory.
Outlook and prognosis
The outlook and prognosis in intersexual persons is not about the course of intersexuality per se. This is given and can only be adjusted to one sex by surgical and hormonal procedures if desired. Nevertheless, it is worth mentioning that there are, for example, children with XY chromosome set who look like a girl for the first time (also regarding the sexual organs). Nevertheless, during puberty a member is formed from the clitoris and the testicles descend. The ability to procreate is subsequently possible. But more relevant is for example the prognosis concerning fertility. In many intersexual persons the examination of the gonads is necessary to make a statement concerning fertility. Often – in case of the wish to have the gender adapted – the gender is selected and adapted accordingly on the basis of the determination made. This is related to family planning. Further prognoses are also based on the indirect and direct consequences of intersexuality. For example, psychological distress is possible due to the gender not being perceived as appropriate or correct. Discrimination and medical disregard occur. After all, there has been a move away from legally mandated gender reassignment after birth. This effectively means more self-determination for intersexual persons and may reduce any existing suffering.
Prevention
There is no effective prevention for intersexuality because chromosomal defects and associated defects in the gonads are responsible for this development. In families where genetic defects have occurred, genetic counseling may be useful before family planning.
Follow-up
Just as possible, self-directed treatment is optional for intersexuality, so is follow-up care. The fact that a person is intersex does not imply a need for treatment or follow-up. However, this arises when the intersexual person decides to undergo gender reassignment. Since surgical and hormonal procedures can be considered here, there are also different types of aftercare: If surgery is performed, subsequent control of scarring and healing is necessary. Especially in the case of the sensitive genital organs, wound healing supported by a physician is advisable. In the case of hormone therapies, regular check-ups are necessary, as certain hormone levels are targeted. In addition, the effect of the therapy on the body must be monitored and understood in order to anticipate and prevent any complications. Other forms of follow-up for intersexuality arise, for example, due to psychological suffering that may occur in intersexuals as a result of their gender condition and due to their environment. If psychological suffering and autoaggressive behavior occurs, treatment is advised. Aftercare may consist of further therapy sessions and also opening up options for the life of the affected person. Friends and loved ones can be very supportive in such cases.
Here’s what you can do yourself
Intersexuality presents a challenge in terms of self-help measures or measures to increase the quality of life of those affected. This is primarily due to the fact that the assumption that intersexuality must or can be treated medically is based on the assumption that there are two defined genders. However, for many intersex people it is not crucial to be able to be assigned to one gender (in everyday life, for example, they might behave accordingly). In everyday life it is rather about problems of social and legal equality. There are various self-help groups and organizations that are open to intersexuals (and mostly also to other persons who are not clearly gendered). Here a point of reference and an exchange about quite everyday challenges in this context can be established. For example, the actions that intersex people take in their everyday lives are highly varied. Some do nothing because they can live contentedly, others need strong support from their personal environment and try many things to fit into a gender role.When it comes to increasing the quality of life in the public sphere, especially those advances play a role that aim to be able to freely choose the gender designation and the name in official documents – and this without the need for gender reassignment surgery. In addition, public education and the teaching of intersexuality in education play a role here. It has also been shown that an early surgery in intersex people leads to a reduced quality of life later on. In this respect, the first step to guaranteeing a good attitude towards life is this, that parents let their child determine these identity-determining steps themselves at the right age.
