| Summary: | This thesis was undertaken to consider women's experiences of living with endocrine conditions that lead to delayed sexual and reproductive development. Delayed sexual and reproductive development results in the body being unable to produce sufficient hormones to induce normative sexual and reproductive development. For women, the physical consequences include a failure to spontaneously menstruate, poor development of secondary sexual characteristics (absence of breast development and sparse pubic hair) and fertility difficulties. What little research that exists on delayed sexual and reproductive development has focused upon men's experiences. These studies report severe long-term consequences of living with an underdeveloped body. However, the psychological, social and emotional consequences of delayed sexual and reproductive development for women are not well understood. This qualitative study used an Interpretative Phenomenological Analysis to explore the women's subjective experiences of delayed sexual and reproductive development, paying particular attention to their experiences of delayed puberty, body image and infertility, throughout adolescence and adulthood. Eleven women were recruited through a specialist endocrine clinic and interviewed individually. The women described how they viewed their bodies and to some degree themselves, as 'not normal' in adolescence. The lack of secondary sexual characteristics, in particular breast development, marked them out as visibly different from peers. The women's distress in relation to their bodies prompted them to seek medical assistance for their delayed development. The women explained how the consequent medical induction of puberty resulted in them looking physically the same as other women, which produced positive feelings. However, the discovery of fertility difficulties on diagnosis prompted further negative self-appraisals. The women employed various strategies to regulate their feelings of difference. The study revealed how the condition impacted upon the women's relationships and gender identity. Based on the findings, it is argued that women living with delayed sexual and reproductive development encounter a range of psychological challenges in adolescence and adulthood. It would seem imperative to integrate psychological support into the model of care the women receive. The clinical and theoretical implications of these findings are discussed.
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