Despite the efforts of self-organisations and activists, operations on the genitals of children are still taking place that do not correspond to the expectations of parents or medical professionals. Research results show that there was no overall decrease in these interventions between 2005 and 2016.[1] Such cosmetic operations on children unable to consent have long been classified as human rights violations by self-help organisations and the UN. In May 2021, the “Law for the protection of children with variants of gender development” passed by the Bundestag came into force. The law followed a ministerial draft that was sent to the Federal States and individual associations for comment on 9 January 2020, and which served to implement the coalition agreement between the CDU/CSU and the SPD, which should make it clear by law that “gender reassignment medical interventions on children are only permitted in cases that cannot be postponed and to avert danger to life.” [2] In May 2021, the law was passed in which it now literally states:

“(1) The care of persons does not include the right to consent to the treatment of a child who is incapable of giving consent and who has a variant of gender development, or to carry out this treatment oneself, which, without any further reason for the treatment, takes place solely with the intention of making the child’s physical appearance match that of the male or female sex.”

In future, therefore, those surgical interventions on intersex children will be expressly prohibited for which there is no medical indication, but which are only carried out with the (cosmetic) aim of adjusting the external sex of the child to a male or female norm. In cases of medically necessary but not immediately life-saving operations, in which a decision cannot be postponed until the child is able to give consent, the parents can decide on the operation, but only with the consent of a family court. In future, the court is to decide in these cases on the basis of an opinion by an interdisciplinary commission consisting, among others, of the medical person treating the child and a person with child and youth psychotherapy qualifications.

If a child who is capable of giving consent wishes to have an intervention him or herself, this can also be carried out. The distinction between the child capable of giving consent and the one incapable of giving consent is generally made in the case of medical treatments without stipulating a statutory age limit in specific individual cases, also taking into account the child’s level of development with regard to the perception and reflection of its own gender identity and is determined by the parents and the person treating.

The “Law for the protection of children with variants of gender development” is an overdue and correct step to protect intersex children, but it remains to be seen whether and with what consequence it will actually be applied in individual cases. The Federal government has committed itself in the law to review the effectiveness of the new regulations after five years and to submit a corresponding evaluation report to the Bundestag. 

[1] Hoenes, Josch; Januschke, Eugen; Klöppel, Ulrike (2019): Frequency of norm-adjusting operations of “ambiguous” genitals in childhood. Follow-up study. Berlin: Centre for transdisciplinary gender studies.

[2] Coalition agreement between the CDU, CSU and SPD, 19. Legislation period (2018). p. 21, 797-799.

Intersex is the term used to define general inborn physical characteristics which do not correspond with society’s conventional binary view of gender. It can be understood in genetic, hormonal or anatomical terms.

Signs of being intersex can manifest shortly before birth, in infancy or during puberty. They also sometimes remain undiscovered. Inter* is described in many ways. Please take a look at our glossary if you would like to know more about the different terms and names.

How many intersex people are there?

This question is difficult to answer. The number of inter* people in Germany has never been officially documented. Moreover, the most appropriate ways to define intersex, male and female are being continually debated. Scientific research suggests that the number of inter* people among the general population lies at between 0.02 and 1.7 per cent.

Comparatively speaking, there are

  • nearly as many twins in Germany as there are inter* children.[1]
  • there are approximately the same number of red-haired people as there are intersex people.[2]

Being intersex is therefore not as rare as you would think. Yet not many people know about it because it has been a taboo subject for so long.

Variations in sex characteristics are not an illness.

Intersex is not an illness and does not generally pose a threat to health. However, some variations can be associated with specific health risks. Intersex is described by medicine by means of diagnoses. Medicine also uses the general term “disorders/differences of sex development”.  However, the term DSD has been criticised by organisations and activists because it gives the impression that there is something wrong with the bodies of intersex people and that they are somehow “faulty” and therefore require some form of treatment.

Does intersex need to be treated?

No. Intersex in itself does not require treatment. Because intersex bodies can be very different from each other, it is important that intersex people know their bodies well and know about the types of services that are provided on an individual basis. Unfortunately, cosmetic procedures are continually offered nowadays which do nothing to improve health, but can in fact achieve the opposite effect.[1] You will find information surrounding discussions on human rights here. You will find further information on health matters here.

[1] In 2017, 1.8% of all births in Germany were twins or multiple births (German Federal Statistical Office).

[2] Approximately 1 to 2% of German citizens are naturally red haired .

[3] Cf. Schweizer, Katinka/Richter-Appelt, Hertha (2012): Die Hamburger Studie zur Intersexualität In: Schweizer, Katinka/Richter-Appelt, Hertha: Intersexualität kontrovers. Giessen: psychosozial Verlag. pp. 187–205.

… we would firstly like to congratulate you on the arrival of your wonderful child!

Every birth is exciting for parents, but the arrival of the first-born child can be especially nerve-wracking and demanding for new parents. Finding out that it is not possible to clearly assign the baby’s gender can often surprise and shock parents. Not everyone knows that there is actually a possibility that their baby could be intersex. Not everyone is prepared for this.

It is perfectly normal to feel unsettled by this news. Life with an intersex child is a new concept and there are certain questions which could become important in the lives of the child and the parents. You are not alone.

Parents may have lots of questions concerning what is actually meant by “variations of sex characteristics”. You will probably be given a diagnosis by a medical professional and are now probably wondering what life as an intersex person could look like. We have therefore put together a number of videos and interviews with intersex people and their parents. If you prefer to communicate with someone in person, you can find a list here of different advisory services.

To help get you started, we can recommend this video on the Regenbogenportal (an online information service by the Federal Ministry of Family Affairs, Senior Citizens, Women and Youth.

We firmly believe that the most helpful approach for all concerned is to talk openly with your child. It is fine if you decide you want to allow your child to grow up as a girl or a boy. Keep an open mind about the fact that your child may feel a greater affinity to a different gender as they grow up. Children express from a young age what they do and don’t like. Listen carefully to them.

Children’s books are a great way to provide information about the subject of intersex and to let children know that there are other children like them. Follow the link here to view a selection of books which incorporate intersex themes. There is an even longer list of books covering the subject of gender diversity, individuality in children in general and sexual diversity. It can also be useful to look at accounts of the lives of adult role models.

The aim of our website is to give you plenty of support by providing information on the subject of intersex. Being properly informed will ease your worries and is also the first important step that will enable you to do the best for your child. For example, did you know that there are nearly as many twins as there are inter* children in Germany?[1] And there are roughly the same number of red-haired people in Germany as there are intersex people?[2] Please feel free to take a look at the information on this website in a way that suits you. Simply select the texts that you want to read (first of all).

[1] In 2017, 1.8% of all births in Germany were twins or multiple births (German Federal Statistical Office).

[2] Approximately 1-2% of people have natural red hair.

There is no registered inter* counselling service available in NRW.

However, the Verein Intersexuelle Menschen e.V. (Association of Intersex People e.V.) offers peer counselling outreach services.

“Peer counselling” basically means that the people providing the advice are themselves intersex or are the parents of an intersex child. They can draw upon their own experiences and provide advice on equal terms.

You can find out more about peer counselling services here.

Verein Intersexuelle Menschen e.V.

There is also a family self-help group, called Lila NRW, which meets regularly in Cologne. Further information can be obtained here: Email.

The website of the self-help group for parents and family members of inter* people (interfamilien) also provides information on personal meetings, literature and various topics related to inter*. 

You can also receive advice on physical matters from medical professionals. Experiences can vary greatly in this regard. It is important that you feel that you are getting good advice and that you feel comfortable throughout the process. It is a good idea to seek advice from support groups and to learn from other peoples’ experiences. Try to work with a doctor you feel you can trust.

Counselling services, which deal with the concerns of intersex people in a sensitive way, include:

Bochum (Rosa Strippe)

Rosa Strippe provides advice to inter* people and their relatives as part of an initial counselling service or “clearing” process (this involves establishing the kind of support that is needed and how it is going to be delivered). The staff have access to a well-researched pool of information, including the contact details of people from support groups and health services. Rosa Strippe provides advice on the protection and safety of intersex children, young people and adults in a subjective way. It deals with matters concerning gender diversity positively, placing the wellbeing of the child at the heart of the process.

Cologne (rubicon e.V.)

Rubicon e.V. also provides counselling services to intersex people, as part of its psychosocial counselling service, offering advice on issues such as sexual orientation, forming a rainbow family and gender self-determination.

Rubicon e.V. does not offer a specialised counselling service to inter* people, but instead performs a signposting role, referring people seeking advice to peer-counselling services such as the Verein Intersexuelle Menschen e.V. Being referred onto the peer counselling service is particularly helpful for inter* people who may be in the process of coming out and for the parents of intersex children who can get answers to the many questions they may have concerning medical matters.

Münster (pro familia)

pro familia Münster advises inter* people, their partners, families and friends competently, sensitively and confidentially. The topics of the consultation can be: Identity and self-description; body, coming out, relationships, local offers, experiences of discrimination, (unfulfilled) desire for children, parenthood of inter* children.

A number of counselling services offered by pro familia NRW, such as:

pro familia Bielefeld

pro familia Cologne Central

pro familia Mettmann

pro familia Oberhausen

pro familia Remscheid

pro familia Sankt Augustin

pro familia Witten

Further information and services offered by support groups (across Germany) can be found here: 

Support groups offering specific advice on diagnoses
OII (Organisation Intersex International)
Antidiscrimination initiatives & Empowerment for Inter*
Kampagne für eine Dritte Option (Campaign for a Third Option)
DGTI (Deutsche Gesellschaft für Transidentität und Intersexualität e.V.) [German Association for Transidentity and Intersexuality]

Youth groups for LGBT people may also be of interest to young inter* people. Further information on LGBT youth groups in NRW can be found at Queeren Jugend NRW. Here you can find out whether issues concerning young intersex people have been taken into account and dealt with.

There is also a blog written by researchers based in Hamburg on the subject of inter* which provides advice on reading materials, events and information on gender diversity. This can be found at: Blog Intersex kontrovers.

The United Nations has also focused on inter* matters and has set up a campaign that calls for a greater awareness of the subject. Videos, accounts from intersex people and fact sheets can be accessed at: Free & Equal (Intersex Awareness by the United Nations). (English)

Intersex people have not often been seen in the public arena. They are rarely represented in series, books or on television.

We have brought together here a number of accounts by intersex people and their families who have shared various aspects of their lives with us.

There are a number of videos, articles and projects on the subject of intersex on the internet. We have listed a few them here: OII Europe (Organisation Intersex International, Europe) has gathered together the testimonies of inter* people from across Europe in the section of their website called #MY INTERSEX STORY. If you look on the project page, you will find videos and information about the project. Inter* people from across the whole of Europe tell their stories in the book. (The website and testimonies are in English)

The Interface Project, which was founded in 2012, portrays the various everyday realities of intersex people. The people introduce themselves in short videos and give accounts of their lives. Each video is accompanied by a transcript.

The TV programme Auf Klo on the public youth TV channel funk has a guest called Audrey from Switzerland in one of its episodes. Audrey talks about various experiences, such as the medical procedures, that she underwent as a child and teenager.

(The videos are in German, French or English. Most of them also have German subtitles..)

You can watch other videos by Audrey on her YouTube channel (Audr XY).

There is a video on Planet Schule, a website that provides education about the media, in which Lynn from Berlin explains what it is like to be intersex.

OII Europe’s YouTube channel includes a video entitled “My intersex story”.

(English with German subtitles.)

The German TV channel WDR also aired a segment in which a mother is interviewed about what it is like to have an intersex child.

Ted Talk by Emily Quinn – The way we think about biological sex is wrong (English with German subtitles). Emily Quinn is an author, graphic artist and an activist with InterAct. The books Inter*Trans*Express and Identitätskrise 2.0 are a collection of short stories, poems and drawings on everyday life and the protest activities of a “gender outlaw”. Both books describe personal experiences and highlight the viewpoints of inter* people.

Here is a list of further materials by intersex people:

Books and websites

This anthology includes short, personal stories by intersex people from all over the world:

Short stories, poems and drawings by an intersex person:

Websites on which intersex people tell their stories:

Other websites and pamphlets on Inter*:

  • Regenbogenportal – an online information service on same-sex lifestyles and gender diversity. An extensive range of useful and informative texts on the subject of intersex produced by the German Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ).
  • Inter* und Sprache. a pamphlet relating to the antidiscrimination project by TransInterQueer.
  • If you want to explore the subjects of acceptance and diversity in more detail, you can find lots of recommended children’s books in the pamphlet Akzeptanz für Vielfalt.

Video clips

Recommended movies/documentaries:

Comics and graphic novels

By Dr Oliver Tolmein (lawyer, Hamburg)

Being intersex is not an illness. Nonetheless, inter* people often need to work closely with doctors for many years. This is sometimes as a result of the after-effects of operations or due to check-ups or follow-up appointments.

The S2k Guideline on intersex has been available to medical professionals since 2016. The guideline defines these “variations of sex characteristics”. Many doctors, parent groups and intersex people themselves have worked on this guidance. Treatment guidelines are important for medical professionals, however, they are non-binding. No one is required to abide by them. However, any deviations from the standards specified in the guidance must be well justified by the medical staff in the event of liability.

Basic rules apply to any form of medical treatment and the way they are documented:

  1. Medical treatment can only be undertaken with the consent of the patient.[1] Consent only becomes effective if the patient has been provided with detailed information about the material facts of the treatment.[2]
  2. When patients are unable to give their own consent, for example, in the case of a young child, the procedure is inadmissible. This applies especially to irreversible gender reassignment procedures. This is touched upon in “Recommendation 31” of the treatment guidelines: “The indications for surgical treatments for children who are unable to give consent shall always be classed as restrictive. Guardians of the child can only provide consent for these procedures carried out on a child who cannot give consent which are medically indicated and prevent the child from suffering any subsequent harm.”[3]
  3. Moreover, patients for whom consent has been granted by a representative, must be provided with information about the treatment[4]. This is particularly important for children who are not yet able to give consent, but who are able to communicate verbally. This is important not least because it makes it clear that the people concerned have the right to know why they are receiving treatment and what exactly is going to happen to them.
  4. There is no fixed age from which children are capable of giving consent or a point up to which they are not capable of giving consent. There may certainly be children who are capable of giving consent to certain procedures. Their consent is therefore also a prerequisite for the legitimacy of the treatment.
  5. Patients are entitled to inspect their own medical records. However, doctors and hospitals are only required to retain the records for 10 years.[5]
  6. Consent can become ineffective, if the doctors are carrying out treatments without providing appropriate information about all the aspects of the treatment or if they have made inaccurate statements. Carrying out a treatment without consent is at the very least a form of physical assault. Physical assault is generally regarded as a criminal offence[6] which usually results in claims for damages.[7]

Other important factors play an important role in the doctor-patient relationship. The physician’s duty of confidentiality is especially important. Patient confidentiality is in place to protect a patient’s personal privacy. Sometimes difficult situations can arise, for example, when young people under the age of 18 do not want doctor-patient conversations to be shared with parents. The legal situation varies on a case-by-case basis. Generally speaking, patient confidentiality needs to be maintained in these cases too. Exceptions in this respect exist if the doctor is trying to serve a higher legal purpose by breaking confidentiality, for example, if it is believed that the patient is at risk of attempting suicide. However, confidentially must always be maintained with respect to third parties, but never with respect to patients. Patients always have the right to know why they are receiving a particular treatment and how it is envisaged that the treatment and condition will progress.[8]

[1] § 630 d BGB.

[2] § 630e BGB.

[3] Cf. the text by Oliver Tolmein “Chirurgische Eingriffe am Genital nicht einwilligungsfähiger intersexueller Kinder und der Schutz der geschlechtlichen Identität” in MedStra, Zeitschrift für Medizinstrafrecht (Journal for Medical Criminal Law), no. 3/2019.

[4] § 630e para. 5 BGB.

[5] § 630f para. 3 BGB, § 630g para. 1 BGB.

[6] § 223 StGB.

[7] Two actions have been brought before a court. Both claimants won their cases.

[8] § 630c para. 2 BGB.

By Gabriela Lünsmann (lawyer, Hamburg)

When considered from a family law perspective, questions concerning the rights of intersex children to knowledge and self-determination arise not only in relation to their parents, but also in relation to third parties, such as the doctors who are providing them with treatment.

Rights vis-à-vis parents

Parents’ right to exercise their parental authority is enshrined in the German Basic Law; however, the state also has a duty to protect children from their parents if they want to make decisions that are harmful to their children. Even if parents’ custody rights provide plenty of scope for parents to make decisions on their children’s behalf, minors also have greater rights the older they become.

Even if parents have full custody rights, they are still not able to make decisions that affect their children that are not legally permissible. For example, lawyers believe that this applies if parents’ consent to operations on their children that do not have the purpose of reducing specific health risks.[1] However, discussions are now being held regarding the introduction of an explicit ban on irreversible gender reassignment operations due to the fact that these types of operations are still being carried out on intersex children who are not able to give their consent. If there were an explicit ban, parents would no longer be able to give their consent to these types of operations. The UN also recognises these operations as violations of human rights. Please follow the link here to read more about human rights.

There are many other decisions that parents may need to make for their intersex children beyond those relating to sex-reassignment operations.

Another issue that comes under parents’ rights to make decisions on behalf of their children concerns the process involved in entering the child’s gender at birth at the registry office. The new law laid down in § 22 para. 3 of the PStG (German Civil Status Act), specifies that intersex children can now be entered into the birth register as “diverse”, “female”, “male” or the entry can be left blank. Any decisions reached concerning both gender and the child’s first name can be changed at a later date by submitting a declaration to the registry office. It is also possible to change the entry multiple times.

For children under the age of 14 years, the declaration can only be submitted by the child’s legal guardians. Children over the age of 14 can submit the declaration themselves, however, their legal guardians must agree to this. If the legal guardians do not consent, the registry office must inform the family court that, as legal guardians, the parents’ wishes override the child’s wishes if this does not put the child’s welfare at risk. Young people can seek help from the family court if they wish to assert their rights against their parents.

The family court can also help if the parents and the child have differing opinions on medical treatments. This applies if parents approve a type of medical treatment or operation which the child is refusing. It also applies conversely if the child wants to undergo a certain medical treatment and the parents are refusing to consent to this.

Ability to give consent

The important point to take into account when considering medical treatments, operations and therapies is whether the children or young people concerned are capable of giving consent. If this is the case, they must always be regarded as patients who should be included when decisions are made regarding the choice of therapy. If doctors do not provide young patients who are capable of giving consent with sufficient information about their treatment and its advantages and disadvantages, and do not obtain their consent, they are violating their codes of professional conduct and are committing a criminal offence. The complainant may be entitled to claims for damages or compensation.

When children and young people receive treatment, it is therefore important that doctors ask themselves who needs to receive information about the treatment and whose consent is required, i.e. is it required from the minor or from the parents. It is not dependent on the legal capacity of the young person for the consent to be effective, i.e. on the young person’s ability to enter into contracts independently, but on whether the young person is “capable of judging in accordance with his moral and mental maturity the meaning and implications of the procedure and his consent” (German Federal Court of Justice – BGH). The young person must therefore be able to assess the benefits and risks associated with any decision. The ability to give consent is not bound by a fixed minimum age. However, it is generally considered that young people under the age of 14 are only capable of giving consent in exceptional cases.

This means in practice that doctors need to give thorough explanations before any treatment, whether the minor is capable of giving consent or not. For example, a 15-year old patient has the ability to make judgements when it comes to routine treatments and minor procedures such as taking blood. The benchmark is considerably higher if the treatments are associated with higher or a high level of risk. For example, if the doctor dispensing the treatment is unsure whether the young patient is capable of giving consent or not, it is necessary to involve the patient’s legal guardians in any decisions about suitable treatment. It is always necessary to obtain parental consent when treating a child who is not capable of giving consent. According to principals specified in the law on child custody, both parents are required to give consent, unless one parent has sole custody of the child. Yet what happens if the child or young person does not agree with the procedures that the parents would like to happen and have authorised? One thing is certain, is that the children’s wishes become more and more important as they advance in age. This is why it is important that the age and maturity of the young person, who is deemed to be incapable of giving consent, is taken into account when any decisions are made. As soon as a young person is capable of giving consent, i.e. is mature enough to grasp the implications of a particular procedure, decisions rest solely on the young person’s consent and no longer on the wishes and preferences of the child’s custodians. When treating children and young people who are not yet capable of giving consent, it is not necessary to comply with medical confidentiality with respect to the parents who have custody of the child. The parents exercise their custodial rights in this case and are entitled to be informed of any issues relating to the doctor-patient relationship. However, it is important to note that the child or young person should also be provided with detailed information.

[1] Kolbe, Angela: Stellungnahme Zur Situation von Menschen mit Intersexualität in Deutschland; Lemke, Ulrike: Stellungnahme Zur Situation von Menschen mit Intersexualität in Deutschland.

Health and healthcare can play an important role for inter* people and their relatives to a greater or lesser extent. During the course of their lives, many intersex people generally need to come into contact with the medical system and deal with questions concerning a diagnosis.

Many intersex people and the parents of intersex people have not had particularly positive experiences with doctors. Yet medical professionals can play an important part in helping intersex people to understand and take good care of their bodies. It is not possible to answer questions intersex people may have relating to biological parenthood in a generalised way. Whether an intersex person can conceive and carry a child needs to be clarified on an individual basis. It is important to discuss your options with a trusted medical professional.

You can find out here how gender is created (from a biological standpoint) and what this means for the body.

The following information describes the different diagnoses and what this means for the body. Further on you will find general information on hormone medications, cancer risk and operations. If you have further questions about diagnoses and their ramifications, you can always contact one of the support groups. Click here to view a list of addresses. There are also other places where you can get advice on intersex in NRW. The various support services are there to help – don’t be afraid to ask!

Possible diagnoses

5-alpha reductase type 2 deficiency and 17-beta hydroxysteroid dehydrogenase type 3 III deficiency

What does that mean?

5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase type 3 deficiency are conditions that affect male gender characteristics. For example, the penis may not be present or it will be small so that the genitalia may initially appear to be female. Later on, as the body starts to mature during puberty, the body develops more pronounced male characteristics.

What happens during puberty?

During puberty, it is likely that the body will take on a more masculine appearance, for example, the development of facial hair, the voice may break and the genitals may start to grow. Depending on how the young person feels, the subjects of gender identity and (sexual and gender) self-determination can become particularly important.

What do you need to be aware of?

The best approach at the beginning is to wait and see how the child develops. We generally advise people to be sensitive and open when dealing with (physical) changes that may arise. It is certainly a good idea to seek help from support groups and medical professionals who have experience with inter* patients, if you feel this is necessary. If you contact any of the support groups, you are likely to come across people who have had similar experiences as you. Medical professionals can provide you with individualised advice and provide specialist support that will help you to make decisions. You can find information on support services in NRW here.

Congenital adrenal hyperplasia (CAH)

What does that mean?

Important hormones such as cortisol (the stress hormone) and aldosterone (a hormone that regulates salt levels in the body) are produced in the adrenal glands. Androgens are also produced here. These are hormones that regulate the development of male characteristics (e.g. testosterone). In CAH, the adrenal glands produce less cortisol and aldosterone and the body compensates by producing more androgens. Depending on the way the condition manifests, this can result in a more masculine appearance and external genitals, along with the presence of both male or female internal sex organs.

What happens during puberty?

Depending on the way CAH manifests, the high levels of testosterone in children can result in the early onset of puberty where children may become particularly tall, their voices may break and they may develop excessive amounts of body hair. Children with less pronounced CAH may often not start their periods even though their bodies have female characteristics.

What do you need to be aware of?

The low concentration of other hormones produced by the adrenal glands can result in symptoms that require treatment such as the life-threatening loss of salts from the body. Hormone therapy will therefore be required over the course of the person’s life.

Types of androgen insensitivity syndrome (CAIS, PAIS, MAIS)[1]

What does that mean?

Androgens are substances in the body that regulate the development of the male body (e.g. testosterone). If the body cannot produce these substances or process the information they carry, in other words, if it is resistant to them, the body may only appear partially masculine or not masculine at all.

What happens during puberty?

This all depends on whether there is complete androgen resistance (CAIS) or a gradual, partial androgen resistance (PAIS, MAIS). If the body is androgen resistant to the greatest degree possible, it can be expected to develop as a female. However, it is not possible to have a menstrual cycle. In the case of partial androgen resistance, more typical masculine characteristics are more likely to develop during puberty, such as the development of facial hair and the voice may break.

What do you need to be aware of?

There can be a higher risk of developing testicular cancer (gonads) in all types of androgen resistance. In the case of CAIS, the risk is very low so the testicles can be left. However, if a diagnosis of PAIS is made, it is necessary to work with a trusted doctor who will need to closely monitor the development of the gonads. Regular ultrasound examinations of the abdominal area will have to be carried out.

Mixed gonadal dysgenesis

What does that mean?

In mixed gonadal dysgenesis, the testicles do not produce very much testosterone. It is often the case that the testicles function in irregular way which means that the internal and external genders may be different. People with this condition may be short in stature.

What happens during puberty?

Children with mixed gonadal dysgenesis do not develop breasts during puberty and will not start their monthly periods.

What should I be aware of?

It is advisable to have the testicles examined on a regular basis (generally by means of ultrasound) because there is a higher chance of developing testicular cancer.

Klinefelter syndrome

What does that mean?

Klinefelter syndrome is where people are born with one or several extra sex chromosomes. 80% of the people diagnosed with Klinefelter syndrome have an additional X chromosome and therefore the chromosome set 47,XXY.[2] The other variations are 48,XXXY, 49,XXXXY and 48,XXYY. It may also be the case that not all cells carry the same set of chromosomes. This is known as mosaicism which means that in some cells the karyotype (i.e. the total number of chromosomes) is 47,XXY, for example, and then 46,XY in other cells.

What happens during puberty?

The effects of these genetic variations manifest themselves in very different ways. This is why it is often difficult to get an early diagnosis. Puberty is unremarkable for most people who are later diagnosed with Klinefelter syndrome. However, many have relatively small, firm testicles which are sometimes in an unusual position. These testicles do not produce very much testosterone and this leads to a chronic lack of testosterone. For example, hair does not grow much on the face or body and breasts may also start to develop.

What should I be aware of?

As musculoskeletal problems, anaemia and tall stature can go hand in hand with chromosomal variation, it is important to pay attention to the signals your body is giving you, to know your body well and to understand if you need special support. Parents can help their children to feel safe and confident to talk about how they feel. Learning difficulties are also associated with Klinefelter syndrome.

Ovotesticular DSD

What does that mean?

“Ovotesticular” means a person is born with both male and female reproductive tissue. Ovarian tissue relates to tissue which is present in the ovaries and testicular tissue relates to tissue in the testicles. When grouped together, the two terms are known as “ovotesticular”. The condition involves the development of both female and male characteristics. People with this condition can vary considerably in their outward appearance.

What happens during puberty?

The body often changes during puberty. This varies from one body to another and how the ovarian and testicular tissue is distributed.

What do you need to be aware of?

As is the case with all diagnoses, operations should not be carried out unless they are required to save lives. It is necessary to wait until the children concerned are able to decide for themselves whether their bodies should be changed. Carrying out surgical procedures too early could have serious negative consequences.

Ullrich Turner syndrome

What does that mean?

Ullrich Turner syndrome affects the number of variations of sex chromosomes. The person concerned may “only” have one X chromosome, i.e. 45,X0, or they may have mosaicism, which means that some cells have 45,X0 chromosomes and other cells have 46,XX or 46,XY.

What happens during puberty?

Lower levels of sex hormones are usually produced in people who are diagnosed with Ullrich Turner syndrome. This may affect the person’s ability to have children. Hormone supplementation therapy may help those wishing to become pregnant. You are advised to seek the advice of a specialist endocrinologist if you would like to know if you are likely to become a biological parent. You can also contact one of the support groups who will be able to share their experiences.

What do you need to be aware of?

The different genetic variations can have different physical effects. Children diagnosed with Ullrich Turner syndrome are more likely to be smaller than average. Other characteristics may also be evident, such as short fingers or fingernails, a small lower jaw or wide rib cage. There is also a higher risk of developing cardiovascular diseases and conditions that affect the kidneys, thyroid, bones, ears, eyes and intestines. In the case of mosaicism, diagnoses are usually only first given during the teenage years or in early adulthood.

When is it helpful to undergo hormone therapy?

Hormones play various roles within the body. The decision to undergo hormone therapy requires very careful consideration. This is because hormones work in a number of ways and not just in a small area of the body. However, in some physical conditions, hormone therapy can be important for health.  

There are fundamentally many reasons why hormone therapy might be needed. The most frequent and most cases are those that involve (1) avoiding health complications caused by low levels of hormones, e.g. osteoporosis, (2) supporting the way individuals feel about their own physical (sex) development.

Cancer risk – important but not decisive

Many people with variations of sex characteristics are already familiar with the subject of cancer risk. It is probably more difficult to find reliable information about this subject than any other.

It is possible that the variations increase the risk of developing malignant tumours in the testicles. It was assumed for a long time that the risk increased if the testicles are located in the abdominal cavity where there are exposed to higher temperatures. The removal of the testicles (gonads) was therefore often recommended (gonadectomy). However, this has serious implications for the body. Hormones have to be taken indefinitely if the testicles are removed. Very little research has been carried out on the effects of hormones on people with different intersex bodies.

It is important to monitor the situation regularly instead of removing the testicles. Changes in the testicles may be detected through regular ultrasound examinations of the testicles and abdominal palpation. It is advisable to talk through your individual situation with a trusted doctor. It’s also important to be aware that it’s not possible to make generalised recommendations. Even though general tendencies have been observed in terms of which variations present the greatest cancer risk, research has not produced any reliable data yet.

Surgical procedures

The subject of surgery is frequently raised when intersex issues are being discussed. In the past, and unfortunately still today, medical professionals have recommended genital surgery on children if they appear to be different than expected and do not confirm with society’s perception of what a boy or a girl should look like. These operations, which have nothing to do with health, can be very damaging and often create subsequent problems.  For example, surgical scars can reopen or urinary problems can develop. It can also be distressing for many people to undergo operations that are not necessarily carried out for health reasons.

It is very difficult to believe that your parents love you unconditionally if they appear to be imposing the condition that your body needs to look “normal” to other people. This can cause you to wonder what your body would be like now had you not undergone the surgery and to question whether things would be different if you had been given the chance to decide what happens to your own body. These thoughts and feelings can damage mental health and lead to serious problems.

Operations that take place without the consent of children and young people and which are primarily intended to ensure that their bodies comply with social norms are now recognised to be human rights violations. Nonetheless, there are still doctors who recommend that parents allow their children to undergo surgery for reasons such as it will ensure that they can have “better” sexual experiences when they are older. These kinds of operations should never be permitted to happen without consent. A legal ban on surgery on intersex people without consent would be an important step forward in the effort to prevent human rights violations against inter* children and young people.

In addition to surgery without consent, operations can be carried out on people who have in fact given their consent. If this applies, it is important that you ensure you are well-informed before the operation takes place about the consequences of your decision and are able to find out whether you are covered by your health insurance policy. You can find out more about your health insurance rights here.

[1] CAIS – Complete Androgen Insensitivity Syndrome.
PAIS – Partial Insensitivity Syndrome
MAIS – Minimal Insensitivity Syndrome.  

[2] The number indicates the number of all the chromosomes.

By Heike Kaiser (7 year old girl)

We found out that our child was intersex during the antenatal examinations. However, we didn’t really appreciate what this meant and our obstetrician didn’t either. Our main ultrasound test indicated that the child was definitely a girl. One week later, we received the results of the chromosome analysis: the result was XY, in other words, a boy! I was confused and asked for an explanation. No, it’s going to be a boy. The doctor didn’t understand that such a thing could be possible and we didn’t know anything about intersex at that time.

The day of the birth arrived. The labels and little wristband ready for the new baby were all in blue. Then our baby arrived and they thought it was a girl. A girl? Even though I was completely exhausted, I was wide awake and completely confused for the second time. However, we had already thought about girls’ names, so we quickly renamed the baby and assumed that the laboratory had made an error.

The next day, an older professor was called from another hospital because the obstetricians and midwives at our hospital were unable to tell us anything about intersex. The professor told us that with regret it is possible for a female baby to have male chromosomes. We were totally confused and couldn’t understand what we were being told because we didn’t know anything about it. This lack of knowledge completely surprised us. We are both academics and were shocked by the experience of not knowing something so fundamental. However, we intuitively just felt happy to have a beautiful child.

The doctor who gave us the information affected us quite significantly. When I look back on the experience with the knowledge I have now, I think this is what ultimately traumatised us. We are basically very open-minded and optimistic parents. But the uncertainty, lack of information from the experts and the taboo surrounding the issue left us feeling very strange about the fact our child was intersex. And we initially found it difficult to accept the logic of the information we were given concerning the fact our baby had male chromosomes and a female phenotype.

We were then fortunate enough to find an endocrinologist at the children’s hospital. He was really laid-back and simply said that intersex girls make the most beautiful girls. He explained that the child may need hormone replacement therapy at a later date, but that wouldn’t be a big deal. His relaxed manner gave us courage and alleviated the stress of the first days.

We initially felt uncertain about the best way to deal with the fact our child was intersex. Should we broach the subject with our family and friends? Should we keep it to ourselves? I told one of my friends about it during this period of uncertainty. Unfortunately, she reacted in a very negative way, so it became clear to me for the first time that we didn’t want to talk about it initially, primarily to protect ourselves. We didn’t want to have to explain or answer questions as we didn’t feel strong enough. To everyone else, it was nothing more than a laboratory error. When I look back, I think this was definitely the right decision. Our daughter should be able to decide for herself if and when she wants to tell everyone around her about being intersex.

Our daughter now knows that she is intersex. She doesn’t completely understand it. She feels sad that she won’t be able to have children by natural means, but she has already thought about alternatives.

We hope that she will be able to live in a world where she can talk about being intersex as if it were nothing special. A lot of education is needed before this becomes a reality.

I wish that we had been better informed. This would have allowed us to truly enjoy the time after she was born. It would have been like if someone had told us at the birth that our child was homosexual. We would have said: So what! Our child is happy and healthy. This makes us very happy. Everything is completely fine.

Children’s books are a part of children’s everyday lives. They are entertaining, bring the family together and can also be educational. Children’s books can also teach children about empathy and sensitivity, help them to learn how to deal with conflict and show them what the world is like or what it can be like.

It is very important that children can see themselves represented in books and stories. To feel as if you are a part of the world and that you have a place in it and are recognised is absolutely critical when developing a sense of identity and self-esteem.

Children’s books can also help to explain complex themes.

The following children’s books written in German deal with the subject of inter*:

Jill ist anders

by Ursula Rosen
Age 4 years and older.

PS: Es gibt Lieblingseis

by Luzie Loda
Age 4 years and older.

Wer ist die Schnecke Sam?

by Maria Pawłowska and Jakub Szamałek, illustrated by Katarzyna Bogucka. Translated from Polish.
Age 5 years and older.

Teaching materials are available that accompany the first two books. You can find out more here.