More than just menstrual cramps: symptoms and uncertainty among women with endometriosis

OBJECTIVE: To examine the frequency, severity, interference with daily life, and symptom distress associated with endometriosis and to explore the relationships among symptoms, emotional distress, uncertainty, and preference for and adequacy of information. DESIGN: A descriptive, cross-sectional correlational study. SETTING: Data were collected at a conference of the Endometriosis Association in Milwaukee, Wisconsin. PARTICIPANTS: A convenience sample of 298 women attending an educational program. MAIN OUTCOME MEASURES: Endometriosis symptoms and symptom distress, emotional distress, and adequacy of information were assessed using author-developed scales. Preference for information was measured by a revision of the Krantz Health Opinion Survey Information Subscale. Uncertainty was assessed using the Mishel Uncertainty in Illness Scale-Community Form. RESULTS: Women experienced multiple symptoms associated with varying levels of distress, including symptoms not typically associated with endometriosis. Participants sought out information but were undecided about whether they had sufficient information about the disease. Uncertainty about endometriosis was relatively high and associated with emotional distress and lack of information about the disease. CONCLUSIONS: Reported symptoms demonstrate the complexity and impact of endometriosis. Women's preference for information and experience of emotional distress and uncertainty suggest the need for information and support. Prospective, controlled studies on the impact of endometriosis and interventions to inform and support patients are needed.