The Experience of Living with Endometriosis

In: Deep Pelvic Endometriosis · 2011 · pp. 79–92 · doi:10.1007/978-88-470-1866-2_4 · W154528066
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This qualitative study explored women's diverse experiences with endometriosis, including delayed diagnosis, pain, disrupted sexuality, and impacts on social relationships and healthcare interactions.

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This chapter uses qualitative research with women with endometriosis to describe how the condition affects multiple aspects of life for patients and those around them, emphasizing that experiences vary widely. It discusses the well-documented delay in diagnosis, the effects of receiving a diagnosis, how women describe endometriosis pain (including dyspareunia), and how endometriosis can disrupt sexuality-related domains such as fertility and sexual relationships. It further covers impacts on social relationships, interactions with health professionals, and experiences of interventions and treatments, presenting these themes through women’s accounts. The paper is centrally about endometriosis — it focuses on qualitative descriptions of living with the disease, including diagnostic delay, pain, and effects on sexuality and social/healthcare experiences.

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Abstract

The experience of endometriosis can impact on every aspect of a woman’s life and of those around her, although the range of experience is diverse. Using qualitative research undertaken with women with endometriosis, this chapter explores the experiences that are most frequently reported. It begins by considering the well-documented delay in diagnosis, and comments on the impact that receiving a diagnosis can have. It then moves on to explore the pain of endometriosis, and the way in which women describe this. A particular type of pain that is common in endometriosis is dyspareunia and this is discussed along with fertility, as both are important aspects of sexuality that may be disrupted by endometriosis. The impact of endometriosis on a woman’s life is played out in her social relationships, her interactions with health professionals, and her experience of interventions and treatments. These issues are presented in remainder of the chapter. Through the words of women with endometriosis, the impact of the disease is brought into sharp relief. Access this chapter Tax calculation will be finalised at checkout Purchases are for personal use only Preview Unable to display preview. Download preview PDF. Similar content being viewed by others

References

Denny E. Women’s experience of endometriosis. J Adv Nurs 2004;46:641–648 Denny E. ‘You are one of the unlucky ones’: delay in the diagnosis of endometriosis. Diversity in Health and Social Care 2004;1:39–44 Denny E, Mann CH. Endometriosis-associated dyspareunia: the impact on women’s lives. J Family Plann Reprod Health Care 2007;33:189–193 Denny E, Mann CH. Endometriosis and the primary care consultation. Eur J Obstet Gynecol Reprod Biol 2008; 139:111–115 Denny E. ‘I never know from one day to another how I will feel’: pain and uncertainty in women with endometriosis. Qual Health Res 2009; 19:985–995 Cox H, Henderson L, Henderson N, Shi C. Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. Int J Nurs Pract 2003;9:2–9 Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril 2006;86:1296–1301 Manderson L, Warren N, Markovic M. Circuit breaking: pathways of treatment seeking for women with endometriosis in Australia. Qual Health Res 2008; 18:522–534 Gilmour JA, Huntington A, Wilson HV. The impact of endometriosis on work and social participation. Int J Nurs Pract 2008; 14:443–448 Author information Authors and Affiliations Rights and permissions Copyright information © 2011 Springer-Verlag Italia About this chapter Cite this chapter Denny, E. (2011). The Experience of Living with Endometriosis. In: Deep Pelvic Endometriosis. Springer, Milano. https://doi.org/10.1007/978-88-470-1866-2_4 Download citation DOI: https://doi.org/10.1007/978-88-470-1866-2_4 Publisher Name: Springer, Milano Print ISBN: 978-88-470-1865-5 Online ISBN: 978-88-470-1866-2 eBook Packages: MedicineMedicine (R0)

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endometriosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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