Background Schistosoma haematobium causes urogenital schistosomiasis and is widely distributed in Tanzania. In girls and women, the parasite can cause Female Genital Schistosomiasis (FGS), a gynecological manifestation of schistosomiasis that is highly neglected and overlooked by public health professionals and policy makers. This study explored community members’ knowledge, attitudes and perceptions (KAP) on and health seeking behavior for FGS. Methods/Principal findings Using qualitative research methods—including 40 Focus Group Discussions (FGDs) and 37 Key Informant Interviews (KIIs)—we collected data from 414 participants (Males n = 204 [49.3%] and Females n = 210 [50.7%]). The study engaged 153 participants from Zanzibar and 261 participants from Northwestern Tanzania and was conducted in twelve (12) purposively selected districts (7 districts in Zanzibar and 5 districts in northwestern Tanzania). Most participants were aware of urogenital schistosomiasis. Children were reported as the most affected group and blood in urine was noted as a common symptom especially in boys. Adults were also noted as a risk group due to their involvement in activities like paddy farming that expose them to infection. Most participants lacked knowledge of FGS and acknowledged having no knowledge that urogenital schistosomiasis can affect the female reproductive system. A number of misconceptions on the symptoms of FGS and how it is transmitted were noted. Adolescent girls and women presenting with FGS related symptoms were reported to be stigmatized, perceived as having a sexually transmitted infection (STI), and sometimes labeled as “prostitutes”. Health seeking behavior for FGS included a combination of traditional medicine, self-treatment and modern medicine. Conclusion/Significance Community members living in two very different areas of Tanzania exhibited major, similar gaps in knowledge about FGS. Our data illustrate a critical need for the national control program to integrate public health education about FGS during the implementation of school- and community-based mass drug administration (MDA) and with improvement of water, sanitation and hygiene (WASH) facilities.

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Female Genital Schistosomiasis is a gynecological disease that is a complication of parasitic Schistosoma haematobium infection and affects at least 40 million girls and women, mostly in sub-Saharan Africa. Little is known about how healthcare workers in endemic areas perceive and manage (diagnose and treat) Female Genital Schistosomiasis. We conducted cross-sectional focus group discussions and key informant interviews among healthcare workers in northwestern Tanzania. Healthcare workers, particularly those working in areas where S. haematobium is highly endemic, were purposively sampled to participate in the study. Discussions and interviews were digitally recorded, transcribed, and analyzed using NVivo version 12. Most healthcare workers lacked knowledge and skills to manage Female Genital Schistosomiasis. They also had multiple misconceptions about its aetiology, modes of transmission, symptoms, and management. Healthcare workers did not consider Female Genital Schistosomiasis in differential diagnoses of women presenting with gynecologic symptoms except sometimes in patients who did not respond to the initial therapy for sexually transmitted infections. Healthcare facilities had limited capacity to manage Female Genital Schistosomiasis. Our findings show critical gaps in both the knowledge of healthcare workers to manage Female Genital Schistosomiasis and in the capacity of healthcare facilities to manage it. To fill these gaps, two urgent needs must be fulfilled: first, training healthcare workers (particularly those working in schistosomiasis-endemic settings) on Female Genital Schistosomiasis, and second, stocking healthcare facilities with necessary medical equipment and supplies for managing this disease.