Female genital schistosomiasis (FGS) has remained a neglected entity since its discovery at the end of the 19th century (1). Despite an accelerating amount of evidence since the 1990s, healthcare professionals in endemic countries are generally not aware of the condition (2). Urinary schistosomiasis affects girls and women living in rural areas with infested water bodies, where as many as 30%–70% might have genital manifestations (3–6). The UNAIDS (2021) estimates that approximately 56 million girls and women live with genital schistosomiasis (7, 8). The parasite and their eggs reside in blood vessels in all parts of the female reproductive tract, and egg deposition may lead to long-lasting inflammatory reactions in the different tissues (9). For this reason, infection with Schistosoma haematobium can lead to a broad variety of gynecological symptoms, such as foul-smelling discharge, blood spotting, lower abdominal pain (LAP), genital ulcer, dyspareunia, and postcoital bleeding (9). In the long term, the damage caused by egg deposition may lead to a higher risk of infertility, ectopic pregnancies, and abortion (10–12). Importantly, individuals who have moved away from endemic areas may experience symptoms and complications many years after exposure, since water contact in childhood may result in chronic disease (13).

In low-resource settings, the World Health Organization (WHO) recommends that syndromic management protocols are used to determine management of genital symptoms and treatment of sexually transmitted infections (STIs) (14). The rationale is to reduce suffering, transmission, and complications when laboratory services are scarce, and patients may not have the possibility, time, or resources to return to a clinic for laboratory result-based treatment (14, 15). According to the WHO, research has previously shown that the syndromic management protocols are cost-effective (14–16). However, subsequent investigations have tempered the enthusiasm from the early years, showing low diagnostic accuracy and thereby a need to upscale laboratory diagnostics in low-resource healthcare settings (17, 18). The nature of syndromic management protocols may be outdated in light of changing disease profiles and emerging infections. Moreover, the present syndromic approach does not include FGS as a cause of genital illness. The WHO continues to advise healthcare authorities to implement syndromic management when there are no other options; hence, many countries use this as their local guidelines for the management of STIs (14). As a result, women in low-resource primary healthcare settings are treated syndromically, at the point of care, often without a gynecological examination or laboratory tests.

In South Africa, the “Standard Treatment Guidelines and Essential Medicines List for South Africa, Primary Health care level” (19) is used by primary healthcare professionals. Very often, these are nurses who diagnose and prescribe accordingly. If a woman presents with vaginal discharge at a low-resource primary healthcare clinic, the current guidelines recommend giving her ceftriaxone, azithromycin, and metronidazole to treat three diseases simultaneously, namely, gonorrhea, chlamydia, and trichomoniasis (14, 19). However, in areas endemic for S. haematobium, these symptoms may be caused by FGS (20, 21). Therefore, women are at risk of not receiving the appropriate treatment as per the current management protocols.

The aim of this paper was to investigate possible symptoms of FGS in relation to the current syndromic management protocol, using data from a previous project where FGS was diagnosed alongside other genital infections (22).

A total of 2,388 women aged 16–34 years were included (see Table 1 for the characteristics of the participants). Sixty percent reported having current freshwater contact and over 90% reported freshwater contact at some time in their life. The majority of the participants reported being sexually active in the last 3 months, but only one-third used condoms in the preceding week. Most knew what an STI is and 1 in 10 had been treated for one. Seven percent said they had been forced to have sex.

Table 2 shows the genital ailments found in this group of young women. Because of financial and practical constraints, not all participants were tested for all diseases. Overall, 81.1% tested positive for one STI or more. Among the sexually active, the rate was 83%, and in the sexually non-active group, it was 76.4%. Of specific interest, gonorrhea was found in 7.8% of the reportedly non-sexually active women. In addition, 23.6% of these were found to have C. trachomatis and 17.6% had T. vaginalis. Urinary schistosomiasis was found in one in five and FGS was diagnosed in 12.5% of the study population.

The currently used clinical management protocols do not include any advice to healthcare workers about FGS. Like previous studies, we found that FGS may mimic and frequently co-exists with other genital infections (20, 24). We found FGS to be as prevalent as other well-known genital diseases in our relatively large study from rural South Africa, and there is reason to believe that this could hold true in many regions of Sub-Saharan Africa (8, 24, 30, 31). The chronic inflammation resulting from FGS may lead to an increased susceptibility to other infections, as seems to be the case for HIV transmission; women with FGS have a two- to threefold risk of having HIV (32–34). More longitudinal research is needed to investigate the association between HPV and FGS (10, 35). Girls and women with FGS are currently not being managed and are not receiving treatment for at least one or possibly several of their genital infections.

Our study on healthy volunteers identified an association between LAP and FGS. However, we did not find LAP to be associated with C. trachomatis and N. gonorrhoeae in our material. A plausible explanation could be that the chronic inflammation from S. haematobium leads to diffuse low-grade abdominal pain, while chlamydia and gonorrhea rarely result in abdominal pain until the infection has developed into more advanced pelvic inflammatory disease (PID) and acute illness (36). Surprisingly, we did not identify a significant association between VDS and FGS. In our analysis, we included only the women reporting vaginal discharge the last week, with the purpose of adapting the analysis to the management protocols and to avoid recall bias. Women with FGS may experience symptoms over months and years; hence, we may have missed some cases with this approach. Another possible explanation for this finding could be that the affected women may have adapted to the inflammatory response in their genitals and perceive their discharge as normal (5).

A remarkable finding is that these women who were invited from randomly selected schools for investigation in an FGS study had such a high level of genital symptoms and ailments. Even though many of them had health complaints, they had not sought treatment. Our analyses indicate that had they come for treatment, a symptom-focused protocol would not properly differentiate those with treatable causative agents from those without, nor would symptoms resulting from the chronic condition FGS have been recognized.

The question about being sexually active in the last 3 months or not decides the treatment plan in syndromic management of STIs. In our data, we found a high prevalence of gonococcal infection also among the “sexually non-active” participants. Questions about sexual behavior could be a sensitive issue when young women meet healthcare professionals (37). However, previous studies have shown that even gonococcal infections may persist more than 90 days after exposure (38). Our study indicates that there are challenges with categorizing women as “not sexually active” when it comes to treatment for genital infections. Furthermore, FGS is not a sexually transmitted disease and must be considered equally in both sexually active and non-active groups.

Our analysis confirms that the syndromic approach is highly inaccurate as a diagnostic tool to identify FGS, and likely leads to incorrect treatment of STIs, as has been shown before (39).

The data analyzed in this study is subject to the following licenses/restrictions: The data is de-identified but not anonymized. Data may be made available upon reasonable request as we are still analyzing data. Requests to access these datasets should be directed to solrunsoe@gmail.com.

The studies involving humans were approved by The Biomedical Research Ethics Committee (BREC), University of Kwa-Zulu-Natal, South Africa (Ref BF09/07), the Department of Health, Pietermaritzburg, South Africa (Ref HRKM010-08) and the Regional Committees for Medical and Health Research Ethics (REC) Southeast Norway (Ref 469-07066a1.2007.535, renewed in 2011). The studies were conducted in accordance with the local legislation and institutional requirements. Written informed consent for participation in this study was provided by the participants’ legal guardians/next of kin.

SS: Conceptualization, Data curation, Formal analysis, Methodology, Visualization, Writing – original draft, Writing – review & editing. MS: Funding acquisition, Project administration, Writing – review & editing. HG-A: Data curation, Investigation, Writing – review & editing. EK: Investigation, Writing – review & editing. SH: Data curation, Software, Writing – review & editing. PP: Funding acquisition, Investigation, Project administration, Writing – review & editing. PN: Funding acquisition, Project administration, Resources, Writing – review & editing. MT: Conceptualization, Funding acquisition, Project administration, Writing – review & editing. BV: Conceptualization, Funding acquisition, Project administration, Writing – review & editing. SN: Funding acquisition, Project administration, Writing – review & editing. AS: Methodology, Supervision, Writing – review & editing. MM: Conceptualization, Validation, Writing – review & editing. SG: Conceptualization, Funding acquisition, Methodology, Project administration, Supervision, Validation, Writing – original draft, Writing – review & editing. EFK: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing.