Women's Experiences of Diagnosis and Treatment of Early Menopause and Premature Ovarian Insufficiency: A Qualitative Study

Abstract

Early menopause (EM) and premature ovarian insufficiency (POI) affect an estimated 10% of women and can precipitate a wide range of physiological and personal impacts. Receiving a diagnosis of EM/POI and navigating treatment can be complex experiences for women; however, qualitative research exploring these aspects of the condition is limited. Our study aimed to increase understanding of women's lived experiences of EM/POI encompassing its medical, social, and emotional dimensions. We conducted narrative interviews with 30 women aged 28 to 51 years with spontaneous and iatrogenic EM/POI and menopausal symptoms resulting from ovarian suppression therapy, and analyzed transcripts thematically. This article examines the prominent and under-researched themes of women's experiences of navigating “diagnosis” and treatment. Diagnosis emerged as a complex and changeable process wherein women had to negotiate a diagnosis of spontaneous EM/POI and grasp the meaning and probability of iatrogenic EM/POI. Navigating treatment entailed further complexity as women grappled with the risks and efficacy of hormonal and non-hormonal medications. The findings underline the intricacies of EM/POI as a biomedical phenomenon and highlight the need for health practitioners to recognize and respond to the challenges women face in coming to terms with the condition and managing its embodied effects.

Co-designing an Early Menopause Digital Resource: Model for Interdisciplinary Knowledge Translation

“…Analysis of interviews with 30 women aged 28 to 51 (diagnosis age 25-44 years) with spontaneous (n ¼ 11) or iatrogenic (n ¼ 19) EM/POI identified low EM/POI awareness; dissatisfaction with diagnosis process; multiple disabling symptoms; uncertainty about EM/POI health impacts and treatments; variable effectiveness of therapies; significant personal/social impacts; appreciation for knowledgeable and empathetic HPs; uneven access to care; and lack of online information. 6,23 Analysis of interviews with 16 HPs (aged 35 years to late 60s, with 7-35 years of experience caring for women with EM/POI) identified the need for: faster/more empathetic diagnosis; holistic care; multiple treatment options; multidisciplinary care; tailored, credible resources; improved care access for regional women; and shared decision-making.…”

“…We have previously reported in detail on the mixed methods iterative research across Phases 1 and 2. 6,[20][21][22][23] This article aims to describe and summarize the overall process of co-design and, for the first time, report on the development (Phase 3) and evaluation (Phase 4) of the digital resource as well as dissemination and implementation (Phase 5).…”

The effect of cognitive-behavioral therapy on stress and anxiety of women with premature ovarian insufficiency: A randomized controlled trial

“…4,5 The common triad of diagnosis includes hypergonadotropic hypogonadism, hypoestrogenism, 6 and secondary amenorrhea. 7 However, the term “POI” is not exactly the same as menopause; some women with POI still have the ability to ovulate 8 and in 5%–10% of cases they may become pregnant naturally. 9 The age of onset of the illness varies widely, even from birth to 11 years.…”

Yonder: Social workers, early menopause, patient access to records, and kangaroo mother care

“…An Australian research team aimed to increase understanding of women's lived experiences of this by interviewing 30 women aged between 28 and 51 years. 2 They found that women have to come to terms with its often harsh consequencesfertility loss, menopausal symptoms, longterm health effects, impacts on sexuality, and often a sense of no longer fitting with socially and culturally-shaped ideas on 'youth' and attractiveness. The authors suggest clinicians can improve their care of these women by making use of new digital resources including online diagnostic and management algorithms, acknowledging potential distress, and recognising that the impact of the condition can extend to women's social identities, relationships, and work.…”