Although the impact of stigma is known for women with urinary incontinence, it has not been well studied among the full spectrum of pelvic floor disorders.  The goal of this study was to quantify the level of stigma in a population of women presenting for urogynecologic care, using a validated stigma scale. The secondary aim of this study is to test the hypothesis that stigma related to pelvic floor disorders results in a delay in care seeking for these problems.

This was a prospective survey study of women presenting for new patient visits in a pelvic floor disorder clinic, including clinics for Female Pelvic Medicine and Reconstructive Surgery and a multidisciplinary bowel control clinic, between May 2017 and February 2018. All new patients were offered an anonymous survey including two validated questionnaires (Stigma Scale for Chronic Illnesses 8-item version (SSCI-8) and Pelvic Floor Bother Questionnaire (PFBQ)) to complete before their visit. The SSCI-8 is an eight item questionnaire measure which assesses multiple aspects of stigma, and scores can range from 8-40. Raw sum scores were calculated for each survey. The Kruskal-Wallis test was used to compare the distributions of stigma scores by response. Logistic regression was used to model factors associated with a delay in seeking care. Spearman correlation was used to determine whether there was an association between SSCI-8 score and PFBQ score.

A total of 523 completed questionnaires were collected within the study period. Women presenting with complaints of urine leakage (UI), accidental bowel leakage (ABL) and constipation had significantly higher SSCI-8 (stigma) scores than those presenting with pelvic organ prolapse (POP). Women presenting with ABL had the highest median stigma score (14) of all the groups (plot 1). Total stigma score had a moderately positive correlation (0.5) with PFBQ score.  Additional factors significantly associated with a higher stigma score were age <50 years and seeking medical care in <1 year from symptom onset. Length of time living with the problems, having friends or family with similar problems, and education level were not significantly associated with stigma level. In a logistic regression model, urine leakage was significantly associated with an increase in odds of waiting 1 year or more to seek care (OR=3.02, 95% CI=1.51-6.03) while lower stigma score was associated with a decrease in odds of waiting 1 year of more to seek care (OR=0.92, 95% CI=0.86-0.98).

Pelvic floor disorders carry varying levels of stigma. ABL is associated with the highest level of stigma while POP is associated with the lowest. Median stigma scores among patients with UI, ABL and constipation were similar to published scores for people living with chronic neurological conditions, the population in which the SSCI-8 was developed and validated. Level of stigma was found to have a moderately positive correlation with overall presence and degree of bother of pelvic floor symptoms as measured by the PFBQ. Younger patients were found to have higher levels of stigma; however, having friends or family with a similar condition did not affect stigma level. Our population had a higher level of education than average, but education level was found to not affect stigma level. On logistic regression, the only presenting complaint associated with delay in seeking care was urinary incontinence; moreover, a higher stigma score increased the odds of seeking care earlier.

Among women with pelvic floor disorders, those presenting with urine leakage, accidental bowel leakage and constipation report higher levels of stigma than those presenting with pelvic organ prolapse.  Younger age is associated with higher stigma, but education level and having friends and family with similar problems do not affect stigma level. These results suggest that we should reject the hypothesis that stigma results in delayed care-seeking; rather, women who feel more stigmatized by pelvic floor disorders appear to seek care earlier.

Molina, Y., Choi, S. W., Cella, D., & Rao, D. (2013). The stigma scale for chronic illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions. Int J Behav Med, 20(3), 450-460. doi: 10.1007/s12529-012-9243-4
Peterson, T. V., Karp, D. R., Aguilar, V. C., & Davila, G. W. (2010). Validation of a global pelvic floor symptom bother questionnaire. Int Urogynecol J, 21(9), 1129-1135. doi: 10.1007/s00192-010-1148-7