Medical Professionals

Welcome to our website all about inter*

We have compiled information on a variety of topics on our website. It has been set up to provide information for anyone dealing with inter* issues. As a medical or healthcare professional, you may already have learned about intersex conditions during your training. However, when working in medical and healthcare settings, it is important to understand that the diagnosis is only a small part of what it means to be intersex on a daily basis. We are delighted to welcome you to our website. We are very glad that you would like to learn (more) about intersex and the issues that concern inter* people. You might perhaps be aware that many inter* people have had to go through difficult and unpleasant experiences with doctors. We hope that the information provided on this website can help healthcare practitioners to deal with the subject in a more sensitive way and achieve higher quality care.

Intersex is the term used to define general inborn physical characteristics which do not correspond with society’s conventional binary view of gender. This might sound a little complicated, but what it means in simple terms is that the bodies of intersex people cannot be classified according to the way society defines male and female genders. Being intersex is not an illness; it just means that the body has developed in a different way.

This website provides a range of different insights into the subject. Our website doesn’t just provide explanations about intersex, it also focuses on legal issues, such as the current laws concerning an intersex person’s civil status. You will also find plenty of information on the best ways to get support from healthcare providers and information concerning human rights violations. Our glossary also provides brief explanations of important terms related to intersex. The aim of this website is to pull together important information that will support you in your work.

Please feel free to browse through our website.

“Law for the protection of children with variants of gender development” (May 2021)
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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.

Advice and activism
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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.  http://www.im-ev.de/
NRW-Landesverbandhttp://nrw.im-ev.de/

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 diagnoseshttp://www.klinefelter.de/cms/
http://www.47xxy-klinefelter.de/
https://www.ags-initiative.de/
http://turner-syndrom.de/
OII (Organisation Intersex International)  https://oiigermany.org/
Antidiscrimination initiatives & Empowerment for Inter* https://interprojekt.wordpress.com/
Kampagne für eine Dritte Option (Campaign for a Third Option) http://dritte-option.de/
DGTI (Deutsche Gesellschaft für Transidentität und Intersexualität e.V.) [German Association for Transidentity and Intersexuality] https://www.dgti.org/

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)

Voices – role models – empowerment
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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

Working together to achieve a good level of healthcare – tips and advice for medical personnel
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Healthcare for intersex people

Even if you have been taught about what is sometimes termed “DSD” during your medical studies or healthcare training, it is important to know that the first meeting with an intersex patient is often an anxiety-inducing occasion. We have therefore compiled some information about inter* people.

Intersex people often associate hospitals and doctors’ surgeries with memories of humiliation and disinformation. Some of them have had to go through examinations and investigations which were not justified by a therapeutic objective that was tailored to their needs. Or their genital area was put on show for the benefit of medical students or colleagues of the doctors carrying out the treatment. If they were subjected to gender reassignment surgery without their consent, they will probably be suffering from the long-term effects of this and/or from receiving hormones that became necessary as a result of the procedure.

Some intersex people try to avoid visiting their doctors because they are afraid of being badly treated or becoming traumatised all over again.

Working together to provide high-quality treatment

Viewed within the context of these types of patronising or violating experiences, it is absolutely critical that inter* patients are seen as people with the right to self-determination and information. It is also important to understand that they also have expert knowledge about their own bodies.

  • If physical examinations are required, ensure that you explain in advance their purpose and the individual steps in the process. Ensure that you obtain their consent and pay particular attention to the way your patients respond during the examination to ensure they are not displaying signs of discomfort. Do not hesitate to suggest any ideas you may have for less invasive examination methods. 
  • Put your personal or professional interest in intersex to one side and focus on the specific concerns your patient would like you to address. You may perhaps require specific information concerning the patients’ sex characteristics or medical history in order to provide them with the correct treatment. If this is the case, make an active effort to clearly explain why you need to ask these questions.
  • Ensure that you use respectful language, and do not disparage your patient’s body or give the impression it is deficient in any way. You can find further information on how to interact with your patients in a responsible way here.
  • Find out as much information as you can about the different therapeutic options, for example, the choice and dose/dosage of replacement hormones. Ensure that decisions are made that are tailored to the patient’s specific requirements as stipulated in the relevant medical guidelines.
  • Put aside any preconceptions you have about what is important to intersex people. For example, hair growth that conforms with conventional gender roles may be less important to them than their general health and well-being.

Knowledge and further education

Intersex bodies, patient histories and concerns can vary considerably. It is likely that you will not be able to draw upon past experience in each and every specific situation.

Many inter* people have acquired extensive knowledge about their bodies and want their clinicians to speak openly with them about the things they feel uncertain about and to develop solutions which focus on their specific physical situation and needs, rather than according to conventional male or female norms. If your patients have questions regarding social or legal issues, you can also point them towards inter* organisations and peer counselling services or find out more information yourself from these services.

This text has been published with the kind permission of the Regenbogenportal and has not been edited in any way. This online information service, which focuses on same-sex lifestyles and gender diversity, provides a range of information to support lesbian, gay, bisexual, trans and intersex people:  regenbogenportal.de.

The S2k Guideline “Variations of Sex Characteristics”
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The S2k Guideline – what does it mean?

The S2k Guideline on “Variations of Sex Characteristics” is a medical guideline which has been in place since 2016. The guideline will be reassessed after five years. This will therefore happen again in 2021.

When something is classified as S2K, this means that it is a consensus-based guideline. Members of the guideline group[1] discuss the treatment recommendations/recommended action for doctors and come to an agreement about them. The other guideline classifications are:

  • S1       Recommended actions provided by an expert group.
  • S2e     Evidence-based guideline (i.e. based on scientific evidence).
  • S3       Evidence and consensus-based guideline (i.e. based on scientific evidence and the agreement reached by the group).

The guidelines are published by the Association of the Scientific Medical Societies in Germany (AWMF). The AWMF is an umbrella organisation which is made up of different medical societies. Its role is to coordinate the development of guidelines. It is important to know that the guidelines are not legally binding. They are intended to serve as a guide for decision making and to improve safety in medicine.

Why is a guideline on “Variations of Sex Characteristics” important?

Medicine plays an important role when it comes to Intersex because most people first find out about their or their child’s inter* variation from their doctors.

The standard procedure followed in medicine was based for a long time on the assumption that variations of sex characteristics were disorders. The sex of an inter* child was often therefore specified as “male” or “female” without considering the best interests of the child. To ensure that the child also fitted into whichever category was defined, operations were carried out, including on the genitalia, which were intended to make whichever gender was decided upon less ambiguous. These interventions commonly took place without any medical (or essential) indication.  

Thanks to protests organised by intersex people, these types of unnecessary medical interventions are now recognised as human rights violations and are also criticised in a statement by the German Medical Council. A study by Hoenes, Januschke and Klöppel points out that the number of operations on “ambiguous” genitalia has not declined in recent years.

What does the guideline recommend?

The S2k guideline, which has been in place since 2016, recognises that intersex or “variations of sex characteristics” is not an illness and therefore should not be treated without medical indication. The guideline advises against operations that have no medical grounds. Operations on the genitals should therefore only be carried out in emergency situations. The gonads (testes) of children should only be removed if there is a high risk of cancer. You can find out more about the risk of cancer here. In all other cases, the gonads should be examined regularly.

One important aspect of the guideline is the recommendations that are made regarding diagnostic procedures. To make a reliable diagnosis, imaging methods (such as ultrasound examinations), a clinical examination, hormone diagnostics and genetic diagnostics should all be carried out.

The other important aspect of the guideline is that it is recommended that individuals receive counselling and/or therapy. Quality of life and acceptance of one’s own body are therefore seen as priorities. Counselling is supposed to take place in specialist centres (i.e. by experts from different disciplines). Decisions to carry out medical procedures, such as operations, should not be made without the involvement of the child. Unless there is a risk to life or health, all decisions should be made by the person who will be affected by these interventions. Children should therefore be provided with information about their bodies in an age appropriate way.

Explanations of the diagnosis should be regarded as a process. It is therefore recommended that the diagnosis and its consequences are discussed throughout several consultations. Peer counselling is also recommended.

So, what should happen next?

Even though the guideline is a step forward, it is not legally binding. This means that no penalties are imposed if medical professionals deviate from the guideline. A legal obligation could only bring about a directive from the medical associations or a statutory ban.

As the guideline is non-binding, it is still now the case that people are subjected to inappropriate and inadequate treatments. It can therefore be important to know what is recommended in the guidelines and what your medical rights are.

You can access all the guidelines here.

[1] In relation to the S2k guideline “Variations of Sex Characteristics“, representatives from the following organisations are included in the guideline group: The German Society of Paediatrics and Adolescent Medicine e.V. (DGKJ); German Society for Child and Adolescent Psychiatry and Psychotherapy (DGKJP); German Society for Gynaecology and Obstetrics (DGGG); German Society for Neonatology and Paediatric Intensive Care Medicine e.V. (GNPI); German Society of Human Genetics e.V. (GfH); German Society for Social Paediatrics and Adolescent Medicine e.V. (DGSPJ); German Society for Sex Research (DGfS); German Academy of Ethics in Medicine e.V. (AEM); Society for Paediatric Radiology (GPR); German Society for Endocrinology (DGE); German Society of Pathology e.V. (DGP); Chamber of Psychotherapists Berlin; German Psychological Society e.V. (DGPs); Eltern-SHG XY-Frauen (Intersexuelle Menschen e.V.) – self-help group for parents; AGS Eltern- und Patienteninitiative e.V. – parent and patient support group for CAH; Intersexuelle Menschen e.V. (Federal Association).

Human rights and inter*
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Cosmetic operations on intersex children are carried out to this day. The number of operations on the genitals of children that do not correspond with the expectations of parents and medical professionals is not declining despite the campaign efforts of support groups and activists.[1]

Many organisations, such as the UN, Organisation Intersex International (OII), Amnesty International etc., define these surgical procedures as human rights violations because the children are not able to make decisions about their own bodies. These organisations believe that informed consent should be required from anyone who undergoes surgery. Parents should only be able to decide if their child should be operated on if the child’s health is at risk.

In addition to operations carried out without consent, there are other areas which can be considered as violations of human rights. For example, when the right to grow and develop in your own way is being violated or it becomes difficult to access your own health records.

Human rights, which are enshrined and protected by human rights law, presuppose that all people should be protected from discrimination and have the right to a private life. They should also be able to achieve the best level of health possible, and to be self-determined and recognised as individuals.

The human rights of intersex people are violated if

  • intersex is classed as a disorder.
  • surgical procedures are carried out on inter* children without consent.
  • informed consent is not taken seriously.
  • the right to grow and develop in your own way (particularly in terms of gender identity) is not respected.
  • it is difficult to access medical records.
  • it is difficult to join sports clubs and other organisations due to discrimination.

You can read a comprehensive report by OII Germany about human rights violations here.

In its survey (2020), the European Union Agency for Fundamental Rights (FRA) also asked inter* people about their experiences of discrimination. These can be viewed in detail on the FRA website. The LSVD has briefly summarized the data.

Amnesty International has also focused on the subject of intersex and human rights. On the Amnesty International website, you can also read stories by inter* people whose rights have not been and are not being protected.

You can also find some suggestions of what you can do to protect the human rights of inter* people in the document solidarity and support.

[1] Hoenes, Josch; Januschke, Eugen; Klöppel, Ulrike (2019): Häufigkeit normangleichender Operationen „uneindeutiger“ Genitalien im Kindesalter. Follow-up study. Berlin: Centre for Transdisciplinary Gender Studies.