“Am I ‘Normal’?”: Adolescents’ Awareness and Experiences of Endometriosis and Menstruation

Randhawa, Amie (2023) “Am I ‘Normal’?”: Adolescents’ Awareness and Experiences of Endometriosis and Menstruation. Doctoral thesis, Birmingham City University.

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Abstract

The majority of those with endometriosis, a common condition affecting an estimated 10% of cisgender women of reproductive age, experience symptom onset during adolescence. However, little research attention has been given to the voices of adolescents and young adults living with the chronic condition. Lack of awareness of endometriosis, menstrual stigmas, and inadequate menstrual health education are considered to contribute to well documented delays in the diagnosis of endometriosis.

To date, this thesis is the first empirical study to explore United Kingdom-based adolescents’ awareness, as well as their experiences of, endometriosis. Taking a pragmatic approach, with a feminist lens, two studies were undertaken: a qualitative study (Study 1) exploring the experiences of endometriosis among adolescents/young adults with a diagnosis of endometriosis; and a quantitative study (Study 2) investigating the awareness of endometriosis among adolescent girls, as well as their experiences of and attitudes towards menstruation.

In Study 1, twenty-four participants aged 18-24, recruited from endometriosis support groups and social media, participated in qualitative narrative interviews. Findings showed that the symptoms of endometriosis in adolescence are wide-ranging, and significantly interfere with many aspects of life, including school, sport, social life, and relationships. Adolescents face a long delay in obtaining a diagnosis, which is contributed to by a widespread lack of awareness of endometriosis and frequent dismissals by health professionals. Drawing on Bury’s (1982) concept of ‘biographical disruption’, qualitative findings highlight how adolescents’ experiences are significantly shaped by their age and life-stage. This study makes a novel contribution demonstrating how endometriosis in adolescence is experienced as a ‘biographical threat’, to both their present and imagined life-trajectories. Furthermore, this biographical threat is contextualised by the gendered, contested, and stigmatised nature of endometriosis. Endometriosis, therefore, not only impacts many of the key aspects of adolescent life, but threatens adolescents’ lives and self-concepts as teenagers/young women, and their imagined futures as mothers/parents, intimate partners, and careered people.

Study 2 used a cross-sectional survey, with 442 teenage girls aged 15 to 19, recruited from schools in the West Midlands. Findings highlighted that most (94%) adolescent girls experience period pain, which for most of these is moderate to severe; many (23%) miss school due to their periods (most often due to pain); and many do not know whether their periods are regular or typical. Only 8% of girls reported that they thought periods were positive, and there was further evidence of stigma and taboos surrounding menstruation, particularly towards discussing it with males and teachers. Finally, an overwhelming majority (92%) had no knowledge of endometriosis, and most (85%) would like to learn about it given the opportunity. The most popular method of gaining such knowledge was at
school (51%).

This research contributes to the evidence base pertaining to adolescent menstruation and endometriosis, and offers support for the need to provide de-stigmatised menstrual health education to all (including education about endometriosis), and to ensure an age-based approach to endometriosis healthcare and support. It also informs future research in this area.

Item Type:	Thesis (Doctoral)
Dates:	Date Event 4 November 2022 Submitted 3 May 2023 Accepted
Uncontrolled Keywords:	Endometriosis, Menstruation, Adolescent, Teenager, Interviews, Survey, Experiences
Subjects:	CAH02 - subjects allied to medicine > CAH02-05 - medical sciences > CAH02-05-04 - anatomy, physiology and pathology
Divisions:	Doctoral Research College > Doctoral Theses Collection Faculty of Health, Education and Life Sciences > School of Health Sciences
Depositing User:	Jaycie Carter
Date Deposited:	08 Jun 2023 13:12
Last Modified:	08 Jun 2023 13:12
URI:	https://www.open-access.bcu.ac.uk/id/eprint/14445

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