Meaning Making and (re)positioning in the life trajectory of women with endometriosis in Brazil

Authors

  • Clara Baltar Freire Furtado
  • Ligia Ribeiro Ferreira
  • Renata Lira dos Santos Aléssio

Keywords:

Endometriosis, Positioning, Life Course

Abstract

The aim of this article was to analyze the meanings and (re)positionings of Brazilian women with endometriosis in their developmental trajectories. From a social interactionist perspective of human development, we used Positioning Theory as a basis for understanding processes of constitution of the self. Semi-structured interviews were conducted with six cisgender Brazilian women, aged between 22 and 46, who had been diagnosed with endometriosis. A positioning analysis was carried out based on the dimensions called self-self, self-other and self-dominant discourse. Different processes of (re)positioning were observed. In the self-self dimension, the presence of strong symptoms triggered a positioning of differentiation from other women. When others questioned the presence of symptoms, it promoted a feeling of loneliness, generating distance from other people in the self-other dimension. With the arrival of the diagnosis, some of the participants reported greater social recognition and more security in their relationships, as well as greater investment in self-care. Regarding the dominant discourse, social expectations attributed to women were reproduced and renegotiated, as well as repositioning in the face of medical authority. We emphasize the importance of focusing on women's narratives in order to sensitize health professionals to women's psychological transformations during the diagnosis and treatment of endometriosis.

References

Agarwal, S. K., Chapron, C., Giudice, L. C., Laufer, M. R., Leyland, N., Missmer, S. A., Singh, S. S., & Taylor, H. S. (2019). Clinical diagnosis of endometriosis: A call to action. American Journal of Obstetrics and Gynecology, 220(4), 354.e1-354.e12. https://doi.org/10.1016/j.ajog.2018.12.039

Arruda, M. S., Petta, C. A., Abrão, M. S., & Benetti‐Pinto, C. L. (2003). Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Human Reproduction, 18(4), 756-759. https://doi.org/10.1093/humrep/deg136

Bellelis, P., Dias Júnior, J. A., Podgaec, S., Gonzales, M., Baracat, E. C., & Abrão, M. S. (2010). Aspectos epidemiológicos e clínicos da endometriose pélvica: Uma série de casos. Revista da Associação Médica Brasileira, 56(4), 467-471. https://doi.org/10.1590/S0104-42302010000400022

Cárdenas Castro, M., Salinero Rates, S., & García Núñez, C. (2020). Escala de violencia ginecológica. Validación de una medida de abuso psicológico, físico y sexual contra las mujeres en el sistema de salud chileno. Revista de Obstetricia y Ginecología de Venezuela, 80(3), 187-196. http://ve.scielo.org/scielo.php?script=sci_abstract&pid=S0048-77322020000300187&lng=es&nrm=iso&tlng=es

Carvalho, A. M. A., Pedrosa, M. I., & Rossetti-Ferreira, M. C. (2012). Aprendendo com a criança de zero a seis anos. Cortez.

Cole, J. M., Grogan, S., & Turley, E. (2021). “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology, 31(2), 171-191. https://doi.org/10.1177/0959353520930602

Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update, 19(6), 625-639. https://doi.org/10.1093/humupd/dmt027

Denny, E. (2009). “I Never Know From One Day to Another How I Will Feel”: Pain and Uncertainty in Women With Endometriosis. Qualitative Health Research, 19(7), 985-995. https://doi.org/10.1177/1049732309338725

Facchin, F., Saita, E., Barbara, G., Dridi, D., & Vercellini, P. (2018). “Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. Journal of Health Psychology, 23(4), 538-549. https://doi.org/10.1177/1359105316688952

Fernley, N. (2021). That one doctor… Qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis. Journal of Endometriosis and Pelvic Pain Disorders, 13(1), 40-52. https://doi.org/10.1177/2284026520984366

Florentino, A. V. de A., Pereira, A. M. G., Martins, J. A., Lopes, R. G. C., & Arruda, R. M. (2019). Quality of Life Assessment by the Endometriosis Health Profile (EHP-30) Questionnaire Prior to Treatment for Ovarian Endometriosis in Brazilian Women. Revista Brasileira de Ginecologia e Obstetrícia / RBGO Gynecology and Obstetrics, 41(9), 548-554. https://doi.org/10.1055/s-0039-1693057

Fonseca, M. de F., Aragao, L. C., Sessa, F. V., Resende, J. A. D. de, & Crispi, C. P. (2018). Interrelationships among endometriosis-related pain symptoms and their effects on health-related quality of life: A sectional observational study. Obstetrics & Gynecology Science, 61(5), 605-614. https://doi.org/10.5468/ogs.2018.61.5.605

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33(11), 1364-1378. https://doi.org/10.1080/08870446.2018.1496252

Hudson, N., Culley, L., Law, C., Mitchell, H., Denny, E., & Raine-Fenning, N. (2016). ‘We needed to change the mission statement of the marriage’: Biographical disruptions, appraisals and revisions among couples living with endometriosis. Sociology of Health & Illness, 38(5), 721-735. https://doi.org/10.1111/1467-9566.12392

Hunsche, E., Gauthier, M., Witherspoon, B., Rakov, V., & Agarwal, S. K. (2023). Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study. International Journal of Women’s Health, 15, 893-904. https://doi.org/10.2147/IJWH.S409733

Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of endometriosis on women’s lives: A qualitative study. BMC Women’s Health, 14(1), 123. https://doi.org/10.1186/1472-6874-14-123

Moutinho, K., & De Conti, L. (2016). Análise Narrativa, Construção de Sentidos e Identidade. Psicologia: Teoria e Pesquisa, 32(2), e322213. https://doi.org/10.1590/0102-3772e322213

Nácul, A. P., & Spritzer, P. M. (2010). Aspectos atuais do diagnóstico e tratamento da endometriose. Revista Brasileira de Ginecologia e Obstetrícia, 32(6), 298-307. https://doi.org/10.1590/S0100-72032010000600008

National Institute for Health and Care Excellence. (2017, September 6). Endometriosis: Diagnosis and management. https://www.nice.org.uk/guidance/ng73

Oliveira, Z. de M. R. de, Guanaes, C., & Costa, N. R. do A. (2004). Discutindo o conceito de “jogos de papel”: Uma interface com a “teoria do posicionamento”. In M. C. Rossetti-Ferreira, K. de S. Amorim, A. P. S. da Silva, & A. M. A. Carvalho (Eds.), Rede de significações e o estudo do desenvolvimento humano (pp. 69-80). Artmed.

Paim, J. (2009). O que é o SUS. Editora FIOCRUZ.

Rodrigues, M. P. F., Lima, F. V., Munhoz A. S. B., Paiva, L. S., Sousa, L. V. A., Zaia, V., & Barbosa, C. P. (2020). Clinical aspects and the quality of life among women with endometriosis and infertility: A cross-sectional study. BMC Women’s Health, 20(1), 124. https://doi.org/10.1186/s12905-020-00987-7

Rossetti-Ferreira, M. C., Amorim, K. de S., & Silva, A. P. S. da. (2004). Rede de significações: Alguns conceitos básicos. In M. C. Rossetti-Ferreira, K. de S. Amorim, A. P. S. da Silva, & A. M. A. Carvalho (Eds.), Rede de significações e o estudo do desenvolvimento humano (pp. 23-33). Artmed.

Schucman, L. V., & Melo, W. da C. (2022). White Supremacy, Brazil Style. NACLA Report on the Americas, 54(2), 197-202. https://doi.org/10.1080/10714839.2022.2084991

Seear, K. (2009). The third shift: Health, work and expertise among women with endometriosis. Health Sociology Review, 18(2), 194-206. https://doi.org/10.5172/hesr.18.2.194

Silva, C. M., Cunha, C. F. da, Neves, K. R., Mascarenhas, V. H. A., & Caroci-Becker, A. (2021). Experiências das mulheres quanto às suas trajetórias até o diagnóstico de endometriose. Escola Anna Nery, 25(4), e20200374. https://doi.org/10.1590/2177-9465-EAN-2020-0374

Sousa, T. R. D., Queiroz, A. P., Baron, R. A., & Sperandio, F. F. (2015). Prevalência dos sintomas da endometriose: Revisão Sistemática. CES Medicina, 29(2), 211-226. http://www.scielo.org.co/scielo.php?script=sci_abstract&pid=S0120-87052015000200006&lng=en&nrm=iso&tlng=pt

Szypłowska, M., Tarkowski, R., & Kułak, K. (2023). The impact of endometriosis on depressive and anxiety symptoms and quality of life: A systematic review. Frontiers in Public Health, 11. https://doi.org/10.3389/fpubh.2023.1230303

Young, K., Fisher, J., & Kirkman, M. (2020). Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis. Feminism & Psychology, 30(1), 22-41. https://doi.org/10.1177/0959353519826170

Zanden, M., Kok, L., Nelen, W. L. D. M., Braat, D. D. M., & Nap, A. W. (2021). Strengths and weaknesses in the diagnostic process of endometriosis from the patients’ perspective: A focus group study. Diagnosis, 8(3), 333-339. https://doi.org/10.1515/dx-2021-0043

Zittoun, T. (2009). Dynamics of Life-Course Transitions: A Methodological Reflection. In J. Valsiner, P. C. M. Molenaar, M. C. D. P. Lyra, & N. Chaudhary (Eds.), Dynamic Process Methodology in the Social and Developmental Sciences (pp. 405-430). Springer US. https://doi.org/10.1007/978-0-387-95922-1_18

Zondervan, K. T., Becker, C. M., & Missmer, S. A. (2020). Endometriosis. New England Journal of Medicine, 382(13), 1244-1256. https://doi.org/10.1056/NEJMra1810764

Published

2024-01-01

How to Cite

Furtado, C. B. F., Ferreira, L. R., & Aléssio, R. L. dos S. (2024). Meaning Making and (re)positioning in the life trajectory of women with endometriosis in Brazil. Psychology and Social Knowing, 13, 82–114. Retrieved from https://www.e-publicacoes.uerj.br/psi-sabersocial/article/view/89733

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Section

Artigos