The Lived Experience of Women With Cancer of the Vulva

Hilary Jefferies, PhD, BSc (Hons); Collette Clifford, PhD, MS, DANS, Dip N, RN, RNT


Cancer Nurs. 2012;35(5):382-389. 

In This Article


Through this phenomenological study, the women told the stories of their illness, what their feelings were, and their understanding after their diagnosis and treatment for cancer of the vulva. Here, an overview of their lived experience has been described using the concept of invisibility and the characteristics that no one can see it, no one has heard of it, and no one talks about it, as the women and wider society had not heard of it or encountered it before. This concept emerged from an in-depth analysis of the data in the context of the 4 existentials of the everyday world, lived body, lived relationship, lived space, and lived time described by van Manen.[9] Underpinning this conclusion was the consideration of other struggles faced by these women. There is a cyclical effect whereby these women experience loneliness and spend time searching for answers and support. This is described in more detail elsewhere.[10]

Although the prognosis for early stage cancer of the vulva is good and many women may expect to be cured of their disease, the invisible nature of the condition and the resulting lack of understanding and support may continue for a considerable period. This sense of invisibility is compounded by the whole experience of this condition. Women who have this condition need help to cope with the changes that can ensue as a result of the condition in many aspects of everyday life and their relationships. The challenge is to find ways to break this cycle that leads to a sense of invisibility described here. This struggle can impact the woman's relationship with the healthcare professions, a factor that may impact her care in the future. It is important to avoid this, as it would impact further the social isolation and invisibility described. There is a need for health professionals to respond to the challenge to make the invisible visible.