An information and support resource for families with children, teens and young adults who have a DSD
Genital examination: when and how? (What I Learned from Jodie) (new!)
(What I Learned from Jodie)[PDF]
Charmian Quigley, Paediatric Endocrinologist, Indianapolis, USA
Genital examination of a child with a variation, difference or disorder of sex development (DSD) may be necessary at some times in the child’s life, for a variety of reasons. But this procedure requires compassion, sensitivity and discretion, and should not be undertaken without careful consideration.
By way of background to this topic, I am summarizing below some lessons I learned from a young girl a few years ago:
Jodie (not her real name) was a 10-year old girl with presumptive diagnosis of partial androgen insensitivity syndrome (PAIS) who had undergone gonadectomy in infancy at another institution. She was referred to me for estrogen replacement to induce breast development. As standard procedure prior to initiation of treatment, I had planned to perform a full physical examination, including her genitalia. However, Jodie refused to allow me to examine her genitalia. At first I was taken aback, as I felt we had established a good rapport, and that my “bedside manner” had put her at ease enough for this assessment to be performed. But despite coaxing, she was staunch in her resistance. And after some time in discussion, Jodie’s mother asked me: “Well, do you really HAVE to examine her?” I pondered a moment . . . . and then asked myself: “Will my findings affect my management?”, “Do I need to know what Jodie’s genitalia look like, in order to treat her with estrogen?”. When I could not answer “yes” to either of my own questions, I agreed with Jodie and her mother that the examination was unnecessary, and proceeded to write the prescription for her estrogen treatment.
This interaction, and the unhappy memories shared by many adults with DSDs who were traumatized by repeated or insensitive genital examinations during childhood, serves as the basis for the following suggested guidelines and advice for parents regarding genital examination at different times in a child’s life.
1. Newborn period and infancy
A careful examination may be critical for diagnostic purposes, but the privacy of your child and family should be maintained. Your baby should be examined by only those medical personnel who are directly involved in your child’s care. If any teaching of medical students or residents is planned, the parents’ permission should be sought well in advance of the examination, and the parents should be allowed time to consider and discuss the request in private before the examination occurs. Similarly, if medical photography is planned, the parents’ written informed consent must be obtained beforehand. If you do not wish to have students or residents observe the examination, or to have photography performed, your wishes should be respected. Before the examination begins, ask the senior physician in the group if you can have a word with her or him privately, then explain that you would prefer to have only the people present who are directly involved in your child’s care. You should be present for the examination, which should be explained in advance to you, and performed in a closed examining room or other private space, not in the middle of a busy hospital ward. At the very least, privacy curtains or screens should be drawn. Whenever possible, all medical specialists involved in the assessment and management (e.g. pediatric endocrinologist, urologist, geneticist, pediatrician) should be present at the same time and undertake the physical examination together, to minimize the number of examinations required. That said, the number of people present during the examination should be kept to a minimum, to avoid overwhelming the child and family. The examination should be performed by the most experienced physician, who should describe the findings in clearly understandable terms to you and to other medical professionals in attendance. As parents you should be encouraged by the physician to ask questions or seek clarification as needed during the examination. Confirmation of certain findings by a second experienced physician during the process may be helpful in some circumstances. After the examination has been completed, the key medical professionals involved in your child’s care should discuss the findings and their implications privately with you and address your questions (with the caveat that information and answers may be limited before a definitive diagnosis is made).
2. Toddler and childhood years
For children who are old enough to be aware of an examination of their “private” area, such a procedure may be perceived as an invasion of that very privacy. Thus even greater care should be taken to minimize the number of examinations performed and medical personnel present during any examination. Whenever possible, a genital examination should not be performed on the first visit to the physician. Instead, the physician should take time to establish a trusting relationship with your child, explaining that sometime later, if the child agrees, he or she will have a complete examination, including his or her private area (with mother or father present), to see how everything is developing. It may be helpful for you to explain to your child in advance of the appointment, that the doctor may want to look at his/her private area, and that it will be OK because Mummy or Daddy will be with her/him the whole time. A child who is old enough to understand the procedure should be asked for her or his permission to perform the examination, before this is undertaken. A child should never be forced to undergo a genital examination against his or her wishes and should never be restrained during the examination.
When the examination has been agreed to, the physician should leave the room while you help your child undress and put on an examining gown or other loose article (perhaps a piece of familiar clothing brought from home, such as a large T-shirt), so that he or she is not fully naked during the exam. Some toddlers and young children may feel less uncomfortable if they are examined while seated on a parent’s lap, rather than lying on an examination couch. If you think this approach might make your child feel safer during the examination, suggest this to the physician. The performance of the examination with the physician seated at the same physical level as the child, rather than standing over the child, may be less threatening. In addition, having the child hold a favorite toy or other security object during the process may provide some comfort. The physician should explain to your child what is about to happen before touching your child, and provide reassurance that he or she will stop if requested. Age-appropriate explanations to describe exactly what the examiner is doing should be provided throughout the procedure. Once the examination is complete, the physician should tell your child should be told how helpful (s)he was and thank him/her for agreeing to be examined. As a parent, you can help your child feel positive about the experience by showing confidence in interactions with the physician, and providing reassurance to your child during the process. Generally, during the childhood years before the child has a clear understanding of his or her condition, detailed discussion of the findings and their implications should not be undertaken with the child in the examination room. For this reason, it is often helpful to have a relative or close friend attend the appointment, so that your child can play in the waiting area while you discuss the findings and their implications with the physician.
3. Teenage years
Genital examination in a teenager is further complicated by the fact that teens have an understanding of the associations between genitalia and sexual function, and may be experiencing their own increasing sense of sexuality, depending on age and developmental stage. This makes the process of genital examination potentially even more invasive than in earlier years. At this stage of life, the individual’s (not just the parent[s]’s) consent for examination is required. The physician should advise parent(s) before the appointment, that a genital examination will likely be needed. If you feel that your teenager will likely need to undergo a genital examination during the medical appointment, it may be helpful to tell her/him in advance, in order to discuss and address any fears or concerns before the appointment. Some teens feel more comfortable being examined by a physician of the same sex, so it may be helpful for you to discuss before the appointment whether your child has a specific preference, and if so, to inform the clinic in advance of your child’s wishes.
At the appointment the physician should explain to your teenager the reasons for the examination, and the teen should be asked if (s)he is comfortable to proceed. It should be noted that because of the authority generally afforded to physicians by patients, some teenagers will acquiesce to genital examination, despite internal fears and concerns about the procedure. The physician should be sensitive to this possibility and ensure that the patient has truly given “informed consent” and not simply tacit acceptance. The teenager should be asked whether (s)he wishes to have a parent (usually the parent of the same sex) in the room during examination; if the patient chooses not to have a parent in the room, consideration should be given to having another medical professional (generally of the same sex as the patient) present as a chaperone, to protect both the patient and the physician. If (s)he agrees to proceed, the physician (and, depending on individual preference, the accompanying parent[s]) should leave the room while the patient undresses and puts on an examining gown. As with younger children, the physician should provide careful explanation of what is about to be done (e.g. “I am going to gently separate your labia with my thumbs.” or “I am going to measure the size of your testicles compared with these beads; that will help me to determine how mature your testicles are.”). Your child should be encouraged to tell the physician if (s)he feels discomfort, has questions or wishes the physician to stop. It is rarely necessary or appropriate to perform a vaginal examination in a teenage girl who is not sexually active. However, for girls who are aware of their diagnosis and are interested to know their vaginal depth, a guided self digital exam may be helpful, and gives the teenager a sense of control of her own body.
After the examination is complete, the findings should be shared with the teenager. As parents, you may want to consider allowing your teenager to choose how much information he/she shares with you about the examination, as long as the information is not of a medically critical nature.
Summary and take-away points:
- Genital examination at all ages should be restricted to those occasions when required for diagnosis or medical management.
- To minimize the number of genital examinations, whenever possible, all key members of the child’s care team (which means only those involved in direct management) should be present for a single genital examination, which should be performed by the most experienced physician (with findings confirmed by a second physician when necessary).
- Generally, it is preferable not to perform genital examination on the first outpatient visit, unless the situation demands prompt investigation or intervention.
- Your child’s permission or consent should be sought before a genital examination is performed.
- Unless medically critical, a genital examination should not be performed if the child refuses or appears to be uncomfortable with the procedure.
- Privacy should be respected at all times.
- The procedure should be explained to a child or teenager in age-appropriate terms before and during the examination.
References (in alphabetical order):
- Clinical Guidelines for the Management of Disorders of Sex Development in Childhood. Intersex Society of North America, 2006. Accessible at www.accordalliance.org.
- Community Paediatrics Committee, Canadian Paediatric Society (CPS). 1999. Ethical approach to genital examination in children. Paediatrics & Child Health; 4(1): 71
- Handbook for Parents: Consortium on the Management of Disorders of Sex Development. Intersex Society of North America, 2006. Accessible at www.accordalliance.org.
- Money J and Lamacz M. 1987. Genital Examination and Exposure Experienced as Nosocomial Sexual Abuse in Childhood. J Nervous and Mental Dis 175(12):173
- Royal Australasian College of Physicians. 2009. Genital Examinations in Girls and Young Women: A Clinical Practice Guideline. Accessible at www.racp.edu.au.