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Hypospadias and Epispadias

What are Hypospadias and Epispadias?

Supports Available for Individuals and Families in Australia

  • Hypospadias and epispadias are common genital variations of the phallus.
  • Phallus is a word that is used for the tissue that develops into either a penis or a clitoris, and is also used to refer to penises. This document will use the word penis, as it is the most common.
  • For babies born with penises, hypospadias is the second most common form of genital variation, after undescended testes.
  • Both hypospadias and epispadias relate to the relative position of the urethral opening along the length of the penis.
  • The urethra is where urine and semen exit the penis. Typically the urethra extends to the tip of the penis leading to an opening on the glans (head) of the penis.
  • Hypospadias is where this opening is located along the underside of the penis.
  • Epispadias is where the urethral opening is located along the top side of the penis.
  • There are many different words used to describe hypospadias and epispadias based on where the opening occurs and how it presents.
  • Less commonly, hypospadias and epispadias can occur in people born with a vagina. In these cases, the vagina and the urethra are sometimes fused to form one opening called a urogenital sinus. There are many variations even though these types are rare.
  • Hypospadias and epispadias also often involve other observable genital differences.

Are these Intersex Variations?

  • Categorisation of hypospadias or epispadias as an intersex variation is often disputed based on how common these variations are and incorrect assumptions that the word intersex means something about an individual’s identity.
  • Hypospadias and epispadias fit most working definitions of intersex because they are innate variations of sex characteristics.
  • Like other intersex characteristics, hypospadias and epispadias are associated with medicalisation and experiences of stigma and shame due to innate sex characteristics.
  • In some cases, hypospadias and epispadias may also be an indicator of other intersex traits.
  • These factors mean that people with hypospadias and epispadias can benefit from intersex support services and groups.

Where do Hypospadias and Epispadias Come From?

Where do Hypospadias and Epispadias Come From?
  • Genital development in all babies starts in utero with what is called a genital ridge. This is formed during the first seven or so weeks of pregnancy.
  • The presence of a ‘SRY’ gene, usually found on the Y chromosome is responsible for testicular development and subsequent testicular production of androgens such as testosterone that drive masculinised development and other functions in the body.
  • These androgens also influence genital development as a foetus grows and develops.
  • People with an SRY gene typically have more androgens in their body resulting in masculine genital development where the genital ridge develops into a penis.
  • As part of this development the genital ridge grows longer and closes around itself to produce the urethra along the length of the penis.
  • Typically the urethra will extend along the full length of the penis with an opening at the end, however differences in this development can produce a urethra that does not extend along the full length of the penis resulting in hypospadias or epispadias.

Recognising Hypospadias and Epispadias

These variations are easily recognised and observed at birth based on the appearance of the external genitalia.

Hypospadias

The urethral opening is located along the underside of the penis.

  • The urethra may exit anywhere along the underside of the penis from as far back as the perineum or scrotum, along the shaft, or on the underside of the glans (head) of the penis.
  • The language and classification of these types of hypospadias is changing over time.
  • Some classifications include perineal, scrotal, penoscrotal, proximal, penile, distal, coronal and glanular hypospadias. In some cases these may simply be referred to as 1st, 2nd, or 3rd degree hypospadias.

Epispadias

  • The urethral opening is located along the top side of the penis.
  • The urethra may exit anywhere along the top of the penis from the pubic bone, along the shaft or top side of the glans (head) of the penis.
  • The language and classification of these degrees of hypospadias is changing over time.
    Some classifications include penopubic, penile and glanular epispadias.

Other features that are sometimes present with hypospadias or epispadias may include:

  • Torsion or ‘twisting’ of the penis, called chordee.
  • Curvature or bending of the penis.
  • A hooded foreskin that does not cover the glans (head) of the penis.

For people with vaginas and vulvas signs of hypospadias and epispadias include:
Urogenital sinus (a singular opening where the vagina and urethra meet).

  • A urethral opening located above the clitoris.
  • A bifurcated (split) clitoris.
  • Urinary incontinence.
  • Urinary retention
  • Can be detected from birth but may not be detected until late childhood, adolescence or even adulthood.

Health Considerations

Most people with hypospadias and epispadias live full, happy, and healthy lives. However, there may be some health considerations to be aware of.

For people with penises:

  • Undescended testes.
    Patil et al. 2015. Female Urethral Anomalies in Pediatric Age Group: Uncovered. J Surg Tech Case Rep. Jan-Jun; 7(1): 14–16. doi: 10.4103/2006-8808.184937 https://www.ncbi.nlm.nih.gov
    /pmc/articles/PMC4959405/
  • Fertility considerations where the urethral opening impacts ejaculation or with internal testes.
  • Difficulty with erections and penetrative sex (particularly with penile curvature or chordee).

For people with vulvas/vaginas:

  • Recurrent urinary tract infections.
  • Incontinence.
As with all innate variations of sex characteristics, these differences can be understood and managed allowing people to live typical lives. There are a range of treatments available to address and manage these conditions should they arise. We need to be able to understand our bodies to be able to look after ourselves, and there is nothing inherently shameful about how your body exists.

Treatment Considerations

You can speak with your doctor about your options should you wish to address or manage the above aspects of your variation. It is also perfectly acceptable not to opt for any intervention or medical management.

The Australian Equal Opportunity and Human Rights Commission recommends minimal medical intervention for people with intersex variations until a person is of an age to consent to treatment, unless there is a clear medical reason to intervene. You should be supported to make the decisions that are best for you.

Talk with a doctor you trust to establish a healthcare plan that is individualised to your needs. Your healthcare plan might include regular check-ups, any required regular testing or health screening, and medications that you may need. It is important that your doctor or health provider listens and responds to your preferences, explains the benefits and risks of any treatment they propose, and provides information about any alternative available options, including the decision to not undertake treatments.

Treatment for hypospadias and epispadias is generally not urgent and can be reasonably deferred until the individual is able to fully participate in decision making about their body,

Treatment and Gender

Some treatment pathways are predicated on the idea that it is preferable to make bodies fit stereotypical characteristics as much as possible. Different assumptions are placed on the gender identity of people with hypospadias and epispadias depending on your anatomy and your sex of rearing.

Typical assumptions for hypospadias and epispadias are that people will identify as boys/men and engage in penetrative intercourse as adults, in line with their expectations of their anatomy and sex of rearing. This assumption can also play into social rationales for surgery such as the idea that it is important for boys/men to be able to stand to urinate. While this may be true for many, or even most people, and these assumptions exist, it is important to remember that people understand themselves in many different ways, and all understandings are equally valid. It is therefore worth taking some time to consider your feelings, values, and gender identity before proceeding with any non-urgent medical options that may alter your sex characteristics. Access to psychosocial support, peers and community can help you to understand these options.

Surgical Interventions

Where there are genuine health risks to an individual this should be addressed in an appropriate time frame as determined by the treating medical team/specialists.

Unnecessary surgery causes additional stress and may need to be followed by more treatments and surgeries later in life. These surgeries are intrusive and are often harmful to physical sensation and sexual enjoyment later in life and take away decision-making and options from the individual, who may grow up to understand their identity and values in ways that are incongruent with the proposed treatment/s.

Psychiatric and psychological professional bodies reject the idea that mental health reasons are good reasons for early surgeries (Australian Human Rights Commission 2021). Parents have also reported regret (Vavilov et al. 2020). Early surgeries without personal consent are also challenged by intersex organisations and human rights institutions because of these risks, and because of a loss of autonomy.

Because surgery has a whole-of-life impact it is important to ensure that medical intervention is restricted to procedures that preserve future options until an individual is able to participate in decision making. For minors, this will be discussed with parents when considering such treatments. Unnecessary surgeries may be illegal in some jurisdictions in Australia.

Having mental and emotional safety does not mean that hurt feelings, jealousy, sadness or frustration won’t occur, but it does mean that you are able to express these feelings in a reasonable way to your partner without fear of their anger or rejection. Having mental and emotional safety in a relationship allows you to work through these challenges and foster stable and secure relationships. This is sometimes easier said than done, and for most people it will be a process that they constantly work with over their lifetime and relationships. 

Mental and emotional safety also concerns the respect and care for a person’s health and wellbeing, so that the relationship does not become or feel like a constant sense of stress, anxiety, sadness, fear or anguish. Healthy relationships are strengthening, supportive and uplifting, even when experiencing and working through challenging circumstances and situations.

Mental and emotional safety, as well as aspects around material safety such as everyday life pressures, can and do fluctuate over time. Imbalances and stressors in these areas do not mean that a relationship is automatically unhealthy. The health of a relationship is largely down to a mindset/commitment to collaborative betterment, problem solving and team work when facing challenges. 

Other aspects of safety such as physical safety, and the material safety of your possessions and property, are more concrete and this type of safety should remain constant in a healthy relationship. It is never okay to use violence, intimidation, manipulation, control, harassment or abuse in a relationship, and in many cases such behavior is unlawful.

As a person with an IVSC it can be hard to recognise when we are feeling unsafe or when we are exposed to harm, particularly if we have experienced harm and trauma at a young age, or when we have not had our physical, mental or emotional boundaries respected. It can be a good idea to check in regularly about our intimate relationships and how we feel we are treated by our partners. Early signs of unhealthy dynamics can be easy to miss. It is important to remember that we all have the right and deserve to feel safe and secure within our relationships.

Genital Surgeries

Genital surgeries suggested in infancy or childhood often aim to change or alter genital appearance or function to fit gender stereotypes (such as standing to urinate). These kinds of treatments are largely proposed for social reasons and do not address any medical need. It is best to defer these decisions until an individual is old enough to be involved in decision-making and consent to treatment. Sometimes these surgeries may be described or referred to as a ‘correction’ or using other similar language. This presumes that something needs to be ‘fixed’ when in reality the tissue is healthy and functional.
  • Early circumcision should be avoided as the foreskin can be used for surgery intended to close the urethra, if it is desired.
  • The choice to modify the appearance and function of genitals with hypospadias is controversial.
  • Some key arguments in favour of surgery rely heavily on gender stereotypes, such as the idea that boys need to be able to stand to urinate.
  • This may sometimes be expressed as a functional norm, about ‘appropriate urination’ (McLennon 2021), when it is not. This should not be used to justify unnecessary interventions without personal consent.
  • Other reasoning also considers the idea that it is better for boys to not remember a surgical procedure, however this only defers conversations about medical history and does not always result in desirable outcomes.
  • People who have undergone early surgery for hypospadias often undergo more procedures later in life.

Risks

Hypospadias and epispadias surgeries, like all surgeries come with a range of risks. These can occur with high frequencies and include:

  • Nerve damage.
  • Reduced sensation.
  • Urethral narrowing or ‘strictures’, with implications for ability to urinate.
  • The abnormal opening of connections between the urethra and other parts of the body. These are termed urethral ‘fistulas’.
  • Scar tissue requiring follow up procedures.

Some doctors even regard a narrowing of the urethra after surgery as a routine complication, and many doctors have expressed concern about surgical outcomes (Roen and Hegarty, 2018).

Surgery is unlikely to be a good response to questions about social belonging and ideas about gender norms. People with hypospadias and epispadias can grow up to be healthy and accepting of their bodies, and able to make their own decisions about treatment (Fichtner et al. 1995, Carmack et al. 2015).

Fertility Treatment

Infertility and impaired fertility can be challenging or distressing for many people with hypospadias and epispadias. Your fertility will depend on your anatomy.

If having children is important to you, and you experience difficulty with your fertility you may wish to consider options that utilise Assisted Reproductive Technologies.

This includes:

  • Microscopic testicular retrieval of sperm (MicroTESE).
  • Intracytoplasmic Sperm Injection (ICSI).
  • Exploring the use of donor sperm.

Fertility concerns should ideally be raised with a doctor early if you are considering having children. Where possible, your doctors can guide you through the steps and decisions you may need to make.

You may also wish to explore alternate family-building options. Parenting takes many shapes and forms such as adoption, step-parenting, foster care, parenting pets, being a godparent or playing an active role with nieces, nephews or cousins. Life is rich with opportunities to nurture, care for and provide guidance to others. Our families can be the ones we are born with but also the ones we choose for ourselves. This can include choosing to have a family without children.

When making any decisions about starting a family, take time to consider your view on your role you want to play in your family and acknowledge the impact of social pressures to conform to traditional ideals about parenthood.

Health Monitoring and Other Treatments

Examinations and Photography

You may need to undergo regular examinations to understand how your body is functioning. This includes genital examinations. Ask how these can be reduced in number, or if they need to go ahead at all.

If you are a parent or carer, you may be asked if photographs can be taken of your child’s genitals, this is not usually necessary, so it is important to ask why it is being suggested. This is sometimes done to minimise the need for future genital examinations, however, should be fully considered due to the distress they can cause the individual later in life. These photographs will not be distributed without your explicit consent as the parent/individual. If you’re uncomfortable with a decision your parents made, you can ask for the photographs to be destroyed.

You can choose not to have genital examinations, or photography altogether, and may wish to ask whether the doctor is able to get the same information another way. More guidance on paediatric genital examinations and photography is available at https://www.rch.org.au/endo/for_
patients_and_families/Information_
about_genital_examinations/

As an adult, your permission must be sought to be examined by doctors, or medical students for education purposes. You should not feel compelled to agree.

Ongoing Care

You may see many different kinds of doctors and health workers. Some people that may be involved in your care may include:

  • A psychologist or psychiatrist, who can help you consider your own treatment options, your wishes and support you and your family.
  • A social worker, peer navigator and peer support workers who can help you navigate health systems, connect you with community, and address any challenges.
  • Your general practitioner or family doctor.
  • A urologist (for anything to do with your anatomy, bladder or urination).
  • Surgeons involved in your care.
  • Fertility specialists (for any fertility support or assisted reproduction).
  • Sexual health specialists.
  • Sexologists and sexological bodyworkers.

You can ask your regular doctor about creating a care plan, and for referrals to community/peer support organisations. Other people have been through these circumstances before, and they can help you navigate medical and support systems.

If your body is functioning in ways that you are happy with, there is likely no need for any medical interventions. As always, you should ask for written copies of the latest reports on outcomes so that you can access all the information about your body and health if and when you need access to it. It’s important for everyone to have adequate information about their body, in order to best manage their physical and mental health.

Working with a doctor is important to understand which of these health concerns are relevant to your body. Learning how to manage these conditions is an important aspect of living with hypospadias or epispadias.

Community and Other Supports

Many people have hypospadias and some are public about it. Some public stories about living with hypospadias include:

Although hypospadias and epispadias may be different to other innate variations, the many struggles faced from the medical community and society more generally, are universally experienced by the intersex community. There are great benefits in connecting with people with hypospadias and epispadias, and also with people who have other innate variations.

Supports Available for Individuals and Families in Australia

References

Australian Human Rights Commission. 2021. Ensuring Health and Bodily Integrity: Towards a Human Rights Approach for People Born with Variations in Sex Characteristics. Sydney, Australia: Australian Human Rights Commission. https://humanrights.gov.au/intersex-report-2021.

Carmack, Adrienne, Lauren Notini, and Brian D. Earp. 2015. ‘Should Surgery for Hypospadias Be Performed Before an Age of Consent?’ Journal of Sex Research 53 (8): 1047–58. doi:10.1080/00224499.2015.1066745.

Fichtner, Jan, D. Filipas, A.M. Mottrie, G.E. Voges, and R. Hohenfellner. 1995. ‘Analysis of Meatal Location in 500 Men: Wide Variation Questions Need for Meatal Advancement in All Pediatric Anterior Hypospadias Cases’. The Journal of Urology 154 (2): 833–34. doi:10.1016/S0022-5347(01)67177-5

Patil et al. 2015. Female Urethral Anomalies in Pediatric Age Group: Uncovered. J Surg Tech Case Rep. Jan-Jun; 7(1): 14–16. doi: 10.4103/2006-8808.184937 https://www.ncbi.nlm.nih.gov/pmc
/articles/PMC4959405/

Roen, Katrina, and Peter Hegarty. 2018. ‘Shaping Parents, Shaping Penises: How Medical Teams Frame Parents’ Decisions in Response to Hypospadias’. British Journal of Health Psychology 23 (4): 967–81. https://doi.org/10.1111/bjhp.12333.

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