Different but normal: stories of women who have grown up with cloacal anomalies

This study investigates the experience of growing up with the condition known as cloacal
anomalies, a diagnosis given, usually at birth, if the rectum, vagina and urethra are fused
into a single common channel. The main medical concerns for women with cloacal
anomalies are bowel function, urinary function, sexual function and fertility. Interpretive
Phenomenological Analysis was used to analyse transcripts of interviews with each of six
young women with cloacal anomalies and yielded seven main themes common to their
accounts, which were distinct from the medical concerns described above. Participants
were keen to be seen as normal and able to live normal lives which included sexual
relationships, personal autonomy and participation in leisure activities. However, they also
acknowledged that in order to achieve this they have to adapt to the restrictions imposed by
the condition and so see themselves as "living a normal life, differently". The second
theme alluded to was coping with uncertainty, as this was a core element in the experience
of growing up with cloacal anomalies, both in terms of long-term outcome and short-term
complications and restrictions. Developing a definition and understanding of the
condition, negotiating the medical system, accommodating cloacal anomalies day-to-day,
managing disclosure and being accepted were also themes that emerged from the accounts
of the participants. An important issue raised by the research was that participants
preferred older, more reliable methods of continence management that worked without
complications to less visible and more technologically advanced solutions that did not.
However, they felt unable to voice dissatisfaction with the solutions offered and
experienced difficulties in communicating openly with medical professionals. Clinical
implications of the research and applicability to areas outside of this specific condition are
discussed.

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