Female genital mutilation (FGM) involves the partial or total removal of the external female genitalia. The practice has no known health benefits but has both immediate and long-term health risks. Little is known about the impact of FGM on lower urinary tract symptoms (LUTS). The primary objective of our study was to describe the prevalence, bother and quality of life (QOL) impact from LUTS in women living with FGM in the United States. We hypothesized that women with FGM will experience a high prevalence of and bother from LUTS.

We queried English-speaking women with FGM through partnerships with case workers, immigration lawyers, and physician asylum evaluators. Participants completed an anonymous online questionnaire, including demographics and validated assessments of LUTS: Female Lower Urinary Tract Symptoms questionnaire (FLUTS) to assess symptom prevalence/bother and Pelvic Floor Impact Questionnaire-7 (PFIQ-7) to assess QOL impact from pelvic floor disorders. FLUTS has 12-items, each with prevalence (never-0, occasionally-1, sometimes-2, most of the time-3, always-4) and bother (not at all-0 to a great deal-10) scores. We considered a score ≥2 (at least sometimes) as positive for having the symptom. Total FLUTS symptom scores range from 0 to 48. The PFIQ has 7 items assessing the impact of pelvic floor symptoms on QOL. Items are scored from 0 (not at all) to 3 (quite a bit bothered). Total scores range from 0-300. There are no established cut-off points for the FLUTS or PFIQ-7. Statistical analysis was performed with SPSS version 24 (Chicago, IL). Data are reported as median (IQR). Correlations were calculated using Spearman’s rho.

30 women, with median age 29 (24-40) are included. 67% self-identified as black/African, 23% East Asian, 7% Caucasian, and 3% South Asian. 77% were Muslim and 23% were Christian. Women were circumcised between age 1-week and 16-years (median 6 years). 40% reported type I circumcision (clitoridectomy), 23% type II (clitoridectomy with labia minora excision), 23% type III circumcision (type II with infibulation of the introitus), and 13% were unsure. 50% were vaginally parous with 33% of these reporting tearing into their urethra and 10% into their anal sphincter at delivery. Urinary tract infections were common: 46% since circumcision; 26% in last year; 10% had > 3 UTIs in the last year. 

73% of women reported at least one LUTS (Table 1). 27% voided ≥ 9 times per day; 60% had nocturia ≥ 2 times. Bothersome voiding symptoms were commonly reported: urinary hesitancy (40%), strained urine flow (30%) and intermittent urine stream (47%). 53% reported urgency urinary incontinence (UUI) and 43% stress urinary incontinence (SUI). Total FLUTS score was 19 (9-25). There was no difference in FLUTS scores of nulliparous and parous women, of women with various types of circumcision, or between age at circumcision and LUTS. FLUTS bother score was 5.5 (3.7-7.5). Symptom prevalence and bother were strongly correlated for all 12-items (rho=0.51-0.90, p<0.001). PFIQ score was 102 (8-144) with 63% reporting urinary symptoms having “moderate” or “quite a bit” of impact on their activities, relationships or feelings.

In addition to the known risks of FGM such as hemorrhage, infection and future obstetric trauma, childhood genital trauma is associated with chronic lower urinary tract symptoms. LUTS, especially voiding dysfunction and nocturia, are common in women with FGM and are extremely bothersome.

Providers caring for patients with FGM should inquire about and offer treatment for LUTS.