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Published in: BMC Women's Health 1/2014

Open Access 01-12-2014 | Research article

Impact of endometriosis on women’s lives: a qualitative study

Authors: Maryam Moradi, Melissa Parker, Anne Sneddon, Violeta Lopez, David Ellwood

Published in: BMC Women's Health | Issue 1/2014

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Abstract

Background

This study aimed to explore women’s experiences of the impact of endometriosis and whether there are differences across three age groups.

Methods

A qualitative descriptive design was conducted using semi-structured focus group discussions with 35 Australian women with endometriosis, in three age groups. All tape-recorded discussions were transcribed verbatim and read line by line to extract meaningful codes and categories using NVivo 9 software through a thematic analysis approach. Categories were then clustered into meaningful themes.

Results

Participants’ ages ranged from 17 to 53 years and had a history of 2 to 40 years living with endometriosis, with an average delay time to diagnosis of 8.1 years. Two main themes emerged: (1) experiences of living with endometriosis, and (2) impact of endometriosis on women’s lives, with 14 discrete categories. The results showed similarities and differences of the impact between the three age groups. The most highlighted impacts were on marital/sexual relationships, social life, and on physical and psychological aspects in all three age groups, but with different orders of priority. Education was the second most highlighted for the 16–24 years, life opportunities and employment for the 25–34 years; and financial impact for those 35 years and above.

Conclusions

Our findings show that endometriosis impacts negatively on different aspects of women’s lives. A better understanding of these findings could help to decrease the negative impact of endometriosis by guiding service delivery and future research to meet more effectively the needs of women and teenagers with this condition.
Literature
1.
go back to reference Gao X, Yeh YC, Outley J, Simon J, Botteman M, Spalding J: Health-related quality of life burden of women with endometriosis: a literature review. Curr Med Res Opin. 2006, 22 (9): 1787-1797.CrossRefPubMed Gao X, Yeh YC, Outley J, Simon J, Botteman M, Spalding J: Health-related quality of life burden of women with endometriosis: a literature review. Curr Med Res Opin. 2006, 22 (9): 1787-1797.CrossRefPubMed
2.
go back to reference Berek JS: Berek & Novak’s Gynecology. 2012, Lippincott Williams & Wilkins, North American Edition edition, 15 Berek JS: Berek & Novak’s Gynecology. 2012, Lippincott Williams & Wilkins, North American Edition edition, 15
4.
go back to reference Sourial S, Tempest N, Hapangama DK: Theories on the pathogenesis of endometriosis. Int J Reprod Med. 2014, Article ID 179515: 9. Sourial S, Tempest N, Hapangama DK: Theories on the pathogenesis of endometriosis. Int J Reprod Med. 2014, Article ID 179515: 9.
6.
go back to reference Hadfield R, Mardon H, Barlow D, Kennedy S: Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK. Hum Reprod. 1996, 11 (4): 878-880.CrossRefPubMed Hadfield R, Mardon H, Barlow D, Kennedy S: Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK. Hum Reprod. 1996, 11 (4): 878-880.CrossRefPubMed
7.
go back to reference Denny E, Mann CH: A clinical overview of endometriosis: a misunderstood disease. Br J Nurs. 2007, 16 (18): 1112-1116.CrossRefPubMed Denny E, Mann CH: A clinical overview of endometriosis: a misunderstood disease. Br J Nurs. 2007, 16 (18): 1112-1116.CrossRefPubMed
8.
go back to reference Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, Brandes I, D’Hooghe T: The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012, 27 (5): 1292-1299.CrossRefPubMed Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, Brandes I, D’Hooghe T: The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012, 27 (5): 1292-1299.CrossRefPubMed
9.
go back to reference Nnoaham KE, Hummelshoj L, Webster P, d’Hooghe T, de Cicco Nardone F, de Cicco Nardone C, Zondervan KT: Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011, 96 (2): 366-373.CrossRefPubMedPubMedCentral Nnoaham KE, Hummelshoj L, Webster P, d’Hooghe T, de Cicco Nardone F, de Cicco Nardone C, Zondervan KT: Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011, 96 (2): 366-373.CrossRefPubMedPubMedCentral
10.
go back to reference Ballweg ML, the Endometriosis Association: The Endometriosis Sourcebook. 1995, McGraw-Hill companies Ballweg ML, the Endometriosis Association: The Endometriosis Sourcebook. 1995, McGraw-Hill companies
11.
go back to reference Denny E: You are one of the unlucky ones: delay in the diagnosis of endometriosis. Divers Health Soc Care. 2004, 1 (1): 39-44. Denny E: You are one of the unlucky ones: delay in the diagnosis of endometriosis. Divers Health Soc Care. 2004, 1 (1): 39-44.
13.
go back to reference Turnbull H, Mukhopadhyay S, Morris E: The effect of endometriosis on quality of life in patients with a diagnosis in their younger reproductive years. [Abstract]. Int J Gynecol Obstet. 2009, 107: S631-Abstracts of 19th FIGO World Congress of Gynecology and Obstetrics. 4–9 October 2009; Cape Town South AfricaCrossRef Turnbull H, Mukhopadhyay S, Morris E: The effect of endometriosis on quality of life in patients with a diagnosis in their younger reproductive years. [Abstract]. Int J Gynecol Obstet. 2009, 107: S631-Abstracts of 19th FIGO World Congress of Gynecology and Obstetrics. 4–9 October 2009; Cape Town South AfricaCrossRef
14.
go back to reference 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 (7): 985-995.CrossRefPubMed 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 (7): 985-995.CrossRefPubMed
15.
go back to reference Jones G, Jenkinson C, Kennedy S: The impact of endometriosis upon quality of life: a qualitative analysis. J Psychosom Obstet Gynaecol. 2004, 25 (2): 123-133.CrossRefPubMed Jones G, Jenkinson C, Kennedy S: The impact of endometriosis upon quality of life: a qualitative analysis. J Psychosom Obstet Gynaecol. 2004, 25 (2): 123-133.CrossRefPubMed
16.
go back to reference Huntington A, Gilmour JA: A life shaped by pain: women and endometriosis. J Clin Nurs. 2005, 14 (9): 1124-1132.CrossRefPubMed Huntington A, Gilmour JA: A life shaped by pain: women and endometriosis. J Clin Nurs. 2005, 14 (9): 1124-1132.CrossRefPubMed
17.
go back to reference Manderson L, Warren N, Markovic M: Circuit breaking: pathways of treatment seeking for women with endometriosis in Australia. Qual Health Res. 2008, 18 (4): 522-534.CrossRefPubMed Manderson L, Warren N, Markovic M: Circuit breaking: pathways of treatment seeking for women with endometriosis in Australia. Qual Health Res. 2008, 18 (4): 522-534.CrossRefPubMed
18.
go back to reference Denny E, Mann CH: Endometriosis and the primary care consultation. Eur J Obstet Gynecol Reprod Biol. 2008, 139 (1): 111-115.CrossRefPubMed Denny E, Mann CH: Endometriosis and the primary care consultation. Eur J Obstet Gynecol Reprod Biol. 2008, 139 (1): 111-115.CrossRefPubMed
19.
go back to reference Gilmour JA, Huntington A, Wilson HV: The impact of endometriosis on work and social participation. Int J Nurs Pract. 2008, 14 (6): 443-448.CrossRefPubMed Gilmour JA, Huntington A, Wilson HV: The impact of endometriosis on work and social participation. Int J Nurs Pract. 2008, 14 (6): 443-448.CrossRefPubMed
20.
go back to reference Denny E, Mann CH: Endometriosis-associated dyspareunia: the impact on women’s lives. J Fam Plann Reprod Health Care. 2007, 33 (3): 189-193.CrossRefPubMed Denny E, Mann CH: Endometriosis-associated dyspareunia: the impact on women’s lives. J Fam Plann Reprod Health Care. 2007, 33 (3): 189-193.CrossRefPubMed
21.
go back to reference Denny E, Khan KS: Systematic reviews of qualitative evidence: what are the experiences of women with endometriosis?. J Obstet Gynecol. 2006, 26 (6): 501-506.CrossRef Denny E, Khan KS: Systematic reviews of qualitative evidence: what are the experiences of women with endometriosis?. J Obstet Gynecol. 2006, 26 (6): 501-506.CrossRef
22.
go back to reference Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, Raine-Fenning N: The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Hum Reprod Update. 2013, 19 (6): 625-639.CrossRefPubMed Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, Raine-Fenning N: The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Hum Reprod Update. 2013, 19 (6): 625-639.CrossRefPubMed
23.
go back to reference Burns N, Grove SK: The Practice of Nursing Research: Appraisal, Synthesis, and Generation of Evidence. 2009, Saunders Elsevier, 6 Burns N, Grove SK: The Practice of Nursing Research: Appraisal, Synthesis, and Generation of Evidence. 2009, Saunders Elsevier, 6
24.
go back to reference Smith JA, Flowers P, Larkin M: Interpretative Phenomenological Analysis: Theory, Method and Research. 2009, SAGE Publications, Ltd Smith JA, Flowers P, Larkin M: Interpretative Phenomenological Analysis: Theory, Method and Research. 2009, SAGE Publications, Ltd
25.
go back to reference Krueger RA, Casey MA: Focus Groups, a Practical Guide for Applied Research. 2009, SAGE publications, Inc, 4 Krueger RA, Casey MA: Focus Groups, a Practical Guide for Applied Research. 2009, SAGE publications, Inc, 4
26.
go back to reference Polit DF, Beck C: Essentials of Nursing Research: Appraising Evidence for Nursing Practice. 2008, Philadelphia: Wolters Kluwer, Lippincott Williams & Wilkins, 7 Polit DF, Beck C: Essentials of Nursing Research: Appraising Evidence for Nursing Practice. 2008, Philadelphia: Wolters Kluwer, Lippincott Williams & Wilkins, 7
27.
go back to reference Silverman D: Interpreting Qualitative Data, a Guide to the Principles of Qualitative Research. 2011, London: Sage, 4 Silverman D: Interpreting Qualitative Data, a Guide to the Principles of Qualitative Research. 2011, London: Sage, 4
28.
go back to reference Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3 (2): 77-101.CrossRef Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3 (2): 77-101.CrossRef
29.
go back to reference Liamputtong P: Qualitative Research Methods. 2009, Australia & New Zealand: OXFORD university press, 3 Liamputtong P: Qualitative Research Methods. 2009, Australia & New Zealand: OXFORD university press, 3
30.
go back to reference Silverman D: Doing Qualitative Research: A Practical Handbook. 2005, London: Sage, 2 Silverman D: Doing Qualitative Research: A Practical Handbook. 2005, London: Sage, 2
31.
go back to reference Low WY, Edelmann RJ: Psychologic aspects of endometriosis: a review. J Psychosom Obstetric Gyn aecology. 1991, 12: 3-12.CrossRef Low WY, Edelmann RJ: Psychologic aspects of endometriosis: a review. J Psychosom Obstetric Gyn aecology. 1991, 12: 3-12.CrossRef
32.
go back to reference Radzetskava L, Fomin A, Suprun L: Psychological peculiarities in patients with endometriosis. Int J Gynecol Obstet. 2000, 70 (Suppl 3): 92-92(1).CrossRef Radzetskava L, Fomin A, Suprun L: Psychological peculiarities in patients with endometriosis. Int J Gynecol Obstet. 2000, 70 (Suppl 3): 92-92(1).CrossRef
33.
go back to reference Lemaire GS: More than just menstrual cramps: symptoms and uncertainty among women with endometriosis. J Obstet Gynecol Neonatal Nurs. 2004, 33 (1): 71-79.CrossRefPubMed Lemaire GS: More than just menstrual cramps: symptoms and uncertainty among women with endometriosis. J Obstet Gynecol Neonatal Nurs. 2004, 33 (1): 71-79.CrossRefPubMed
34.
go back to reference Lorencatto C, Petta CA, Navarro MJ, Bahamondes L, Matos A: Depression in women with endometriosis with and without chronic pelvic pain. Acta Obstet Gynecol Scand. 2006, 85 (1): 88-92.CrossRefPubMed Lorencatto C, Petta CA, Navarro MJ, Bahamondes L, Matos A: Depression in women with endometriosis with and without chronic pelvic pain. Acta Obstet Gynecol Scand. 2006, 85 (1): 88-92.CrossRefPubMed
35.
go back to reference Eriksen HLF, Gunnersen KF, Sorensen JA, Munk T, Nielsen T, Knudsen UB: Psychological aspects of endometriosis: differences between patients with or without pain on four psychological variables. Eur J Obstet Gynecol Reprod Biol. 2008, 139 (1): 100-105.CrossRefPubMed Eriksen HLF, Gunnersen KF, Sorensen JA, Munk T, Nielsen T, Knudsen UB: Psychological aspects of endometriosis: differences between patients with or without pain on four psychological variables. Eur J Obstet Gynecol Reprod Biol. 2008, 139 (1): 100-105.CrossRefPubMed
36.
go back to reference Sepulcri Rde P, do Amaral VF: Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis. Eur J Obstet Gynecol Reprod Biol. 2009, 142 (1): 53-56.CrossRefPubMed Sepulcri Rde P, do Amaral VF: Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis. Eur J Obstet Gynecol Reprod Biol. 2009, 142 (1): 53-56.CrossRefPubMed
37.
go back to reference Tripoli TM, Sato H, Sartori MG, de Araujo FF, Girao MJ, Schor E: Evaluation of quality of life and sexual satisfaction in women suffering from chronic pelvic pain with or without endometriosis. J Sex Med. 2011, 8 (2): 497-503.CrossRefPubMed Tripoli TM, Sato H, Sartori MG, de Araujo FF, Girao MJ, Schor E: Evaluation of quality of life and sexual satisfaction in women suffering from chronic pelvic pain with or without endometriosis. J Sex Med. 2011, 8 (2): 497-503.CrossRefPubMed
38.
go back to reference Fourquet J, Baez L, Figueroa M, Iriarte RI, Flores I: Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertil Steril. 2011, 96 (1): 107-112.CrossRefPubMedPubMedCentral Fourquet J, Baez L, Figueroa M, Iriarte RI, Flores I: Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertil Steril. 2011, 96 (1): 107-112.CrossRefPubMedPubMedCentral
39.
go back to reference De Graaff AA, D’Hooghe TM, Dunselman GA, Dirksen CD, Hummelshoj L, Simoens S: The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Hum Reprod. 2013, 28 (10): 2677-2685.CrossRefPubMed De Graaff AA, D’Hooghe TM, Dunselman GA, Dirksen CD, Hummelshoj L, Simoens S: The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Hum Reprod. 2013, 28 (10): 2677-2685.CrossRefPubMed
40.
41.
go back to reference Cox H, Henderson L, Wood R, Cagliarini G: Learning to take charge: women’s experiences of living with endometriosis. Complement Ther Nurs Midwifery. 2003, 9 (2): 62-68.CrossRefPubMed Cox H, Henderson L, Wood R, Cagliarini G: Learning to take charge: women’s experiences of living with endometriosis. Complement Ther Nurs Midwifery. 2003, 9 (2): 62-68.CrossRefPubMed
42.
go back to reference Vercellini P, Meana M, Hummelshoj L, Somigliana E, Vigano P, Fedele L: Priorities for endometriosis research: a proposed focus on deep dyspareunia. Reprod Sci. 2011, 18 (2): 114-118.CrossRefPubMed Vercellini P, Meana M, Hummelshoj L, Somigliana E, Vigano P, Fedele L: Priorities for endometriosis research: a proposed focus on deep dyspareunia. Reprod Sci. 2011, 18 (2): 114-118.CrossRefPubMed
43.
go back to reference Fritzer N, Haas D, Oppelt P, Renner S, Hornung D, Wolfler M, Hudelist G: More than just bad sex: sexual dysfunction and distress in patients with endometriosis. Eur J Obstet Gynecol Reprod Biol. 2013, 169 (2): 392-396.CrossRefPubMed Fritzer N, Haas D, Oppelt P, Renner S, Hornung D, Wolfler M, Hudelist G: More than just bad sex: sexual dysfunction and distress in patients with endometriosis. Eur J Obstet Gynecol Reprod Biol. 2013, 169 (2): 392-396.CrossRefPubMed
45.
go back to reference Plotkin KM: Electronic Doctoral thesis. Stolen Adolescence: The Experience of Adolescent Girls with Endometriosis. 2004, University of Massachusetts Amherst, Paper AAI3136765 Plotkin KM: Electronic Doctoral thesis. Stolen Adolescence: The Experience of Adolescent Girls with Endometriosis. 2004, University of Massachusetts Amherst, Paper AAI3136765
46.
go back to reference Ballweg ML: Impact of endometriosis on women’s health: comparative historical data show that the earlier the onset, the more severe the disease. Best Pract Res Clin Obstet Gynaecol. 2004, 18 (2): 201-218.CrossRefPubMed Ballweg ML: Impact of endometriosis on women’s health: comparative historical data show that the earlier the onset, the more severe the disease. Best Pract Res Clin Obstet Gynaecol. 2004, 18 (2): 201-218.CrossRefPubMed
Metadata
Title
Impact of endometriosis on women’s lives: a qualitative study
Authors
Maryam Moradi
Melissa Parker
Anne Sneddon
Violeta Lopez
David Ellwood
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Women's Health / Issue 1/2014
Electronic ISSN: 1472-6874
DOI
https://doi.org/10.1186/1472-6874-14-123

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