Aims. To understand how women with Parkinson's disease (PD) experience and cope with menstruation and associated gynaecological problems, and adjustments to womanhood. This paper focuses on menstruation.
Rationale. Unique hormonal fluctuations are known to affect women with idiopathic PD, however, our understanding of the impact of these changes on daily lives and opportunities for nursing support are limited.
Methods. Descriptive multiple case study design was adopted, and data collection involved a variety of approaches. Including semi-structured interviews, conversational interviews, group interview, reflective diaries and creative writing. A flexible approach was encouraged whereby consenting women chose how and when they wanted to participate.
Findings. A total of 19 women participated, 17 were experiencing naturally occurring periods. The majority had been diagnosed around the age of 39 years, and at the time of study participants ages ranged from 34 to 56 years. Three of the women reported no change in the experience of their periods following diagnosis, 15 reported worsening problems which in two extreme situations led to hysterectomy. During the monthly cycle PD symptoms were often exaggerated, medication effectiveness reduced and ‘off times’ increased. The period itself involved high levels of pain, fatigue and sometimes humiliating experiences when self-care was impossible.
Conclusions. This study offers a unique contribution to our understanding of the needs of young women with PD, and suggests that health professionals need to look beyond the mask of a disease associated with old age. The nursing profession has a responsibility to develop models of best practice to enable women of any age to be themselves and to adapt to the rhythm of their hormones as they live and grow older with PD.