Abstract
Purpose: Pelvic congestion syndrome (PCS) is an underdiagnosed cause of chronic pelvic pain, which accounts for nearly 30% of gynecological visits. Chronic pelvic pain due to PCS is often exacerbated from long periods of standing or walking, sexual intercourse, and menstruation. Research on PCS mainly uses quantitative approaches that focused on evaluating the effects of pharmacological or medical procedures for PCS and associated pain and symptoms. There is limited evidence that provides deep understanding of the experiences of chronic pelvic pain from the women’s perspectives. Using a qualitative, descriptive phenomenological design, the purpose of this study was to describe the experiences of chronic pelvic pain among women PCS.
Methods: A purposive sample of nine adult females with chronic pelvic pain following treatment for PCS was recruited from a Facebook support group. In-depth individual interviews were conducted via Zoom® using a semi-structured interview guide to explore their experiences of pain after PCS treatment. Data were transcribed verbatim and checked for accuracy. Data management and analysis were performed using nVivo. A rigorous, iterative data analysis method was employed to examine the data, compare codes, challenge interpretations, and inductively develop themes.
Results: Five essential themes epitomized the experience of living with chronic pelvic pain after treatment of PCS: 1) Diverse health status before diagnosis; 2) Journey of being diagnosed; 3) Suffering from a variety of excruciating pain sensations; 4) Being a crutch on family due to loss of ones’ independence; 5) Everybody has to put their life on pause; and 6) Losing all faith in women’s healthcare.
Conclusion: Our findings highlight the significant challenges faced by women suffering from chronic pelvic pain after treatment for PCS. The lack of awareness among healthcare providers often results in repeated referrals, ambiguous diagnoses, and ongoing debilitating pain. This research lays the groundwork for amplifying the experiences of affected women, addressing the critical gap in PCS diagnosis. There is an urgent need for education aimed at women, healthcare providers, and insurance companies to raise awareness, improve diagnostic accuracy, and advocate for comprehensive coverage of necessary treatments, ultimately alleviating the burden on these women and enhancing their quality of life.
Notes
References:
Fu, M. R., & Rosedale, M. (2009). Breast cancer survivors' experiences of lymphedema-related symptoms. Journal of Pain and Symptom Management, 38(6), 849-859. https://doi.org/10.1016/j.jpainsymman.2009.04.030
Meissner, M. H., Khilnani, N. M., Labropoulos, N., Gasparis, A. P., Gibson, K., Greiner, M., Learman, L. A., Atashroo, D., Lurie, F., Passman, M. A., Basile, A., Lazarshvilli, Z., Lohr, J., Kim, M.-D., Nicolini, P. H., Pabon-Ramos, W. M., & Rosenblatt, M. (2021). The symptoms-varices-pathophysiology classification of pelvic venous disorders: A report of the American Vein & Lymphatic Society international working group on pelvic venous disorders. Journal of Vascular Surgery: Venous and Lymphatic Disorders, 9(3), 568-584. https://doi.org/10.1016/j.jvsv.2020.12.084
O'Brien, M. T., & Gillespie, D. L. (2015). Diagnosis and treatment of the pelvic congestion syndrome. Journal of Vascular Surgery Venous and Lymphatic Disorder, 3(1), 96-106. https://doi.org/10.1016/j.jvsv.2014.05.007
Ozsvath, K. (2023). Are patients excluded from insurance coverage for venous treatment based on gender? Journal of Vascular Surgery: Venous and Lymphatic Disorders. https://doi.org/10.1016/j.jvsv.2023.06.010
Patel, S. E. (2024). Pain experience and quality of life for women living with pelvic venous disorders: A scoping review. Journal of Radiology Nursing. https://doi.org/10.1016/j.jradnu.2024.09.005
Patel, S. E., & Chesnut, S. R. (2024). Relationships among pelvic congestion syndrome pain, daily activities, and quality of life. Journal of Obstetric, Gynecologic & Neonatal Nursing, 53(4), 416-426. https://doi.org/10.1016/j.jogn.2024.03.002
Sigma Membership
Lambda Phi
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Descriptive/Correlational
Research Approach
Qualitative Research
Keywords:
Primary Care, Acute Care, Pelvic Congestion Syndrome, PCS
Recommended Citation
Patel, Sarah E.; George, Sarah Mary; Boateng, Mercedez Dowah; and Fu, Mei R., "Losing All Faith in Women’s Healthcare: Women’s Experience with Pelvic Congestion Syndrome Pain" (2025). International Nursing Research Congress (INRC). 100.
https://www.sigmarepository.org/inrc/2025/presentations_2025/100
Conference Name
36th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Seattle, Washington, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Losing All Faith in Women’s Healthcare: Women’s Experience with Pelvic Congestion Syndrome Pain
Seattle, Washington, USA
Purpose: Pelvic congestion syndrome (PCS) is an underdiagnosed cause of chronic pelvic pain, which accounts for nearly 30% of gynecological visits. Chronic pelvic pain due to PCS is often exacerbated from long periods of standing or walking, sexual intercourse, and menstruation. Research on PCS mainly uses quantitative approaches that focused on evaluating the effects of pharmacological or medical procedures for PCS and associated pain and symptoms. There is limited evidence that provides deep understanding of the experiences of chronic pelvic pain from the women’s perspectives. Using a qualitative, descriptive phenomenological design, the purpose of this study was to describe the experiences of chronic pelvic pain among women PCS.
Methods: A purposive sample of nine adult females with chronic pelvic pain following treatment for PCS was recruited from a Facebook support group. In-depth individual interviews were conducted via Zoom® using a semi-structured interview guide to explore their experiences of pain after PCS treatment. Data were transcribed verbatim and checked for accuracy. Data management and analysis were performed using nVivo. A rigorous, iterative data analysis method was employed to examine the data, compare codes, challenge interpretations, and inductively develop themes.
Results: Five essential themes epitomized the experience of living with chronic pelvic pain after treatment of PCS: 1) Diverse health status before diagnosis; 2) Journey of being diagnosed; 3) Suffering from a variety of excruciating pain sensations; 4) Being a crutch on family due to loss of ones’ independence; 5) Everybody has to put their life on pause; and 6) Losing all faith in women’s healthcare.
Conclusion: Our findings highlight the significant challenges faced by women suffering from chronic pelvic pain after treatment for PCS. The lack of awareness among healthcare providers often results in repeated referrals, ambiguous diagnoses, and ongoing debilitating pain. This research lays the groundwork for amplifying the experiences of affected women, addressing the critical gap in PCS diagnosis. There is an urgent need for education aimed at women, healthcare providers, and insurance companies to raise awareness, improve diagnostic accuracy, and advocate for comprehensive coverage of necessary treatments, ultimately alleviating the burden on these women and enhancing their quality of life.
Description
Pelvic congestion syndrome (PCS) is a cause of chronic pelvic pain in women. Research has primarily focused on the effects of pharmacological or medical procedures for PCS on associated pain and symptoms using quantitative approaches. There is limited evidence that provides deep understanding of the experiences of women living with PCS pain. This study presentation provides rich descriptions and comprehensive understanding regarding the experiences of chronic pelvic pain among women with PCS.