Transition of Care - Sexuality

Abnormal anatomy, scarring and insecurities can cause problems with body image, thus impacting an individual's sexual development in patients with congenital anomalies.

Not only children with functional pelvic floor problems may experience difficulties related to sexuality; this topic should be addressed for all children with congenital anomalies or chronic health conditions.

Factors associated with having a congenital anomaly that may impact a patient's self image include having scars or anatomical deformities.

Some patients may be afraid to talk about their body being different due to feelings of shame or insecurities, which in the long term may impact their sexuality and how they enter into relationships.

Colorectal patients who are dependent on bowel management may experience negative associations with this region of the body, which can make it difficult to relax during sexual activity and experience sexual pleasure.

At 3 to 4 years of age, children start getting interested in exploring their bodies, and generally go through a phase of body comparison.

Starting from 3-4 years of age, patients with congenital anomalies will have to deal with self awareness, and they will need tools to talk about their bodies and why they look different compared to peers.

Colorectal patients may have fears about soiling and uncertainty about possible odors, which the patient may find difficult to talk about, and these factors may impact a patient's sexuality.

Clinicians should make parents aware of the body exploration phase at ages 3-4, so that they will be prepared for their child's questions and ready to support them.

A psychologist can support the patient to manage difficult feelings related to body image and promote body confidence, and how to make it open to discussion when starting a relationship.

Clinicians should empower parents to discuss sexuality with their child in accordance with the patient's age, encouraging them not to consider it as a taboo, as the first step to achieve normalization and promote body confidence.

It is important to build a network of interested clinicians with relevant experience working with patients with congenital anomalies on sexuality topics, which could include a specialist nurse, gynecologist, urologist, psychologist and sexologist.

Adolescents do not like to discuss sexuality with adults, but with peers.

Patients with congenital anomalies might find it difficult to express any physical differences they might encounter to their friends.

Clinicians can make use of other resources available, such as online tools, websites and books to educate themselves, their patients and their patients' parents.

Patients need to receive information about their bodies at an earlier stage at 9 to 10 years old to give them tools as adolescents to talk about sexuality with peers and seek advice from parents or clinicians.

When addressing the topic of sexuality with the patient, the use of language and terminology used with patients and parents should be consistent, and age appropriate books can help identify the best terminology for clinicians and parents to use.

By including the topic of sexuality as a standard part of the patient's follow up program, clinicians can normalize the topic and make it easier to refer back to it at a later stage.

In order for clinicians to discuss sexuality, they must be comfortable with addressing the topic, with the possibility of referral to a specialist more familiar with talking about sexuality according to the child's developmental age.