Living with endometriosis: a phenomenological study

ABSTRACT

Purpose: To explore and understand the lived experiences of women with endometriosis.

Method: Qualitative study using Cohen phenomenology.

Results: The data analysis identified four main themes and two sub-themes. The main themes are: delay in diagnosis, which includes the sub-theme of the misunderstanding of one’s state; worsening of one’s life, which includes the sub-theme of a painful life; disastrous intimate life with one’s partner; and uncertainty about being able to have one’s own children.

Conclusions: The themes that emerged represent the starting point for further research and for the implementation of specific educational and support strategies that improve self-care, commitment and quality of life for women with endometriosis.

KEYWORDS:

• Endometriosis
• experience
• women’s health

Strengths and limitations

• Cohen’s phenomenological analysis allows researchers to analyse complex data that provide new knowledge on the understanding of the experiences of women suffering from endometriosis.

• This study investigated the psychosocial aspectof endometriosis that is still little investigated by international researchers.

The monocentricity of the sample and the qualitative approach do not allow generalisation.

Acknowledgments

The authors are grateful to the support of selected hospital and unit. The authors would like to thank the women who participated in this study.

Disclosure statement

The authors declare that they have no competing interests.

Additional information

Notes on contributors

Teresa Rea

Teresa Rea is a RN, PhD and she believes that the true subjectivity of care and prevention comes from the true perception of experiences.

Pierluigi Giampaolino

Pierluigi Giampaolino is MD, Phd, attentive to the problems of women with endometriosis.

Silvio Simeone

Silvio Simeone is RN, PhD with an interest in qualitative research, and he is convinced that the true understanding of experiences is the basis for the development of personalized care.

Gianluca Pucciarelli

Pucciarelli Gianluca is RN, PhD, FAHA with a strong clinical research experience. He believes in qualitative research as research that can help healthcare professionals understand the real needs of a specific population.

Rosaria Alvaro

Rosaria Alvaro is MSN, RN, FESC. She is  Professor of General, Clinical and Pediatric Nursing Sciences. She is the President of the degree course in nursing and of the master's degree course in nursing and midwifery in University of Tor Vergata and is vice-president of the Italian Society of Nursing Sciences.

Assunta Guillari

Assunta Guillari is RN, PhD who is passionate about the discovery of qualitative research. She is convinced that the true understanding of experiences is the basis for the development of personalized care.