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Genital schistosomiasis in non-endemic settings: a clinical perspective

Published online by Cambridge University Press:  20 August 2025

Hannah Rafferty*
Affiliation:
Hospital for Tropical Diseases, London, UK
Clare E. Warrell
Affiliation:
Hospital for Tropical Diseases, London, UK Clinical Research Department, London School of Hygiene and Tropical Medicine, London, UK Rare and Imported Pathogens Laboratory, Porton Down, UK
Laura E. Nabarro
Affiliation:
Hospital for Tropical Diseases, London, UK
Gauri Godbole
Affiliation:
Hospital for Tropical Diseases, London, UK
Peter Chiodini
Affiliation:
Hospital for Tropical Diseases, London, UK Malaria Reference Laboratory, London School of Hygiene and Tropical Medicine, London, UK
*
Corresponding author: Hannah Rafferty; Email: hannah.rafferty@nhs.net

Abstract

Genital schistosomiasis, caused mainly by infection with Schistosoma haematobium flukes, causes a variety of symptoms and significant complications in men and women. With high levels of migration from sub-Saharan Africa to Europe and North America, genital schistosomiasis is likely to be encountered more frequently by clinicians in non-endemic areas. In this article, we review the current knowledge of genital schistosomiasis in non-endemic areas, available guidelines and barriers to clinical care of patients. Future work to address these barriers will likely improve care for patients with this neglected and stigmatized disease.

Information

Type
Review Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press.

Introduction

Genital schistosomiasis can affect men, in the form of male genital schistosomiasis (MGS), and women in the form of female genital schistosomiasis (FGS). It is an inflammatory condition, most commonly caused by infection with Schistosoma haematobium worms. Schistosoma haematobium worms form mating pairs in the urogenital venous plexus, producing eggs which migrate through genital tissue, causing inflammation in the reproductive organs (Bustinduy et al., Reference Bustinduy, Randriansolo, Sturt, Kayuni, Leustcher, Webster, Van Lieshout, Stothard, Feldmeier and Gyapong2022). This results in symptoms mimicking sexually transmitted infections and reproductive complications for affected men and women (Kjetland et al., Reference Kjetland, Kurewa, Mduluza, Midzi, Gomo, Friis, Gundersen and Ndhlovu2010, Reference Kjetland, Leutscher and Ndhlovu2012; Christinet et al., Reference Christinet, Lazdins-Helds, Stothard and Reinhard-Rupp2016; Laroche et al., Reference Laroche, Mottet, Malincenco, Gay, Royer and Riethmuller2016; Miller-Fellows et al., Reference Miller-Fellows, Howard, Kramer, Hildebrand, Furin, Mutuku, Mukoko, Ivy and King2017; Kayuni et al., Reference Kayuni, Lampiao, Makaula, Juziwelo, Lacourse, Reinhard-Rupp, Leutscher and Stothard2019). FGS is estimated to affect 56 million women, mainly in sub-Saharan Africa (Engels et al., Reference Engels, Hotez, Ducker, Gyapong, Bustinduy, Secor, Harrison, Theobald, Thomson, Gamba, Masong, Lammie, Govender, Mbabazi and Malecela2020). Estimates are lacking for MGS, but this is likely to affect millions of men in the same region. With high levels of migration from sub-Saharan Africa to areas non-endemic for schistosomiasis such as Europe and North America, clinicians in non-endemic areas may more frequently encounter genital schistosomiasis (McAuliffe and Oucho, Reference McAuliffe and Oucho2024). We review current knowledge and guidelines for clinical practice in non-endemic areas and explore potential barriers to care in these settings.

Importance of diagnosis and management

Symptoms of FGS include abnormal bleeding, dyspareunia, genital lesions and abnormal discharge. Symptoms of MGS include lumpy semen, haematospermia, pelvic pain and pain during ejaculation. These symptoms can be mistaken for sexually transmitted infections, potentially leading to misdiagnosis and unnecessary treatments. A key complication of FGS is increased risk of HIV acquisition (Patel et al., Reference Patel, Rose, Kjetland, Downs, Mbabazi, Sabin, Chege, Watts and Secor2021). Although further studies are required, it is hypothesized that MGS causes increased HIV-1 shedding in the semen. Left untreated, patients may develop complications, including subfertility in both men and women (Kini et al., Reference Kini, Dayoub, Raja, Pickering and Thong2009; Kjetland et al., Reference Kjetland, Kurewa, Mduluza, Midzi, Gomo, Friis, Gundersen and Ndhlovu2010; Miller-Fellows et al., Reference Miller-Fellows, Howard, Kramer, Hildebrand, Furin, Mutuku, Mukoko, Ivy and King2017; Bowers et al., Reference Bowers, Sonnet and Downs2025). FGS complications may also include ectopic pregnancy and stillbirth (Laroche et al., Reference Laroche, Mottet, Malincenco, Gay, Royer and Riethmuller2016). Given that schistosomiasis is a urogenital disease, genital schistosomiasis patients often also have urological manifestations, with a risk of squamous cell carcinoma of the bladder (IARC, 1994). In addition, there may be a link to cervical dysplasia (Rafferty et al., Reference Rafferty, Sturt, Phiri, Webb, Mudenda, Mapani, Corstjens, van Dam, Schaap, Ayles, Hayes, van Lieshout, Hansingo and Bustinduy2021; Sturt et al., Reference Sturt, Omar, Hansingo, Kamfwa, Bustinduy and Kelly2025), and possibly prostate cancer (Figueiredo et al., Reference Figueiredo, Richter, Borja, Balaca, Costa, Belo and Grácio2015), although further research is required. Given the combination of genital symptoms, misdiagnosis of sexually transmitted infections and effects on fertility, genital schistosomiasis can be stigmatizing for many patients, and this may prevent patients from presenting to healthcare services. It is essential that genital schistosomiasis is diagnosed and managed promptly to avoid the host of potential associated complications and prolonged stigmatization of patients.

Burden in non-endemic settings

There remain few studies estimating the burden of FGS in non-endemic settings, although FGS has been reported in both migrants and travellers from endemic areas (Chen et al., Reference Chen, Flynn, Shreefter and Blagg2012; Laroche et al., Reference Laroche, Mottet, Malincenco, Gay, Royer and Riethmuller2016; Roure et al., Reference Roure, Pérez-Quílez, Vallès, Valerio, López-Muñoz, Soldevila, Torrella, Fernández-Rivas, Chamorro and Clotet2022, Reference Roure, Vallès, Pérez-Quílez, López-Muñoz, Chamorro, Abad, Valerio, Soldevila, Gorriz, Herena, Pedregal, España, Serra, Cera, Rodríguez, Serrano, Falguera, Hegazy, Fernández-Rivas, Miralles, Conde, Montero-Alia, Miranda-Sánchez, Llibre, Isnard, Bonet, Estrada, Prat, Clotet, Riera, Rovira, Segura, Escoda, Villalaz-Gonzales, Jesús Delgado, Ferre-García, Santamaria and Matero2024b). There have been two cross-sectional studies based in Barcelona including migrants from sub-Saharan Africa. These studies found schistosomiasis seroprevalence rates of 28.4% (Roure et al., Reference Roure, Vallès, Pérez-Quílez, López-Muñoz, Chamorro, Abad, Valerio, Soldevila, Gorriz, Herena, Pedregal, España, Serra, Cera, Rodríguez, Serrano, Falguera, Hegazy, Fernández-Rivas, Miralles, Conde, Montero-Alia, Miranda-Sánchez, Llibre, Isnard, Bonet, Estrada, Prat, Clotet, Riera, Rovira, Segura, Escoda, Villalaz-Gonzales, Jesús Delgado, Ferre-García, Santamaria and Matero2024b) and 54.8% (Roure et al., Reference Roure, Pérez-Quílez, Vallès, Valerio, López-Muñoz, Soldevila, Torrella, Fernández-Rivas, Chamorro and Clotet2022), and a strong association between seropositivity and gynaecological symptoms, including dysmenorrhoea, menorrhagia, vaginal discharge and pruritus and infertility. In a retrospective case notes review of patients presenting to the Hospital for Tropical Diseases in London with Schistosoma ova on microscopy of histopathology, only 6.5% of women reported gynaecological symptoms, highlighting potential diagnosis gaps (Rafferty et al., Reference Rafferty, Warrell, Polley, Bodhani, Nabarro, Godbole, Bustinduy, Kjetland, Hsieh and Chiodini2025). Further studies are urgently required in additional settings to assess the prevalence and impact of FGS in non-endemic settings.

Data on the burden of MGS in non-endemic settings are lacking, despite multiple reports of travellers and migrants presenting with MGS in non-endemic settings (Pérignon et al., Reference Pérignon, Pelicot and Consigny2007; Kini et al., Reference Kini, Dayoub, Raja, Pickering and Thong2009; Hawary et al., Reference Hawary, Taylor, McEwans and Napier-Hemy2012; Richter et al., Reference Richter, Kayuni, Stothard, Ramarokoto, Lindner, Fusco, Feldmeier, Bustinduy and Friedman2025). There is one community-based cross-sectional study of adult male migrants from sub-Saharan Africa living in Spain. This study reported a seroprevalence of 37.6%. Seropositivity was strongly associated with multiple genital symptoms, including pelvic pain, pain on ejaculation, erectile dysfunction and infertility (Roure et al., Reference Roure, Vallès, Pérez-Quílez, López-Muñoz, Chamorro, Abad, Valerio, Soldevila, España, Hegazy, Fernández-Rivas, Gorriz, Herena, Oliveira, Miralles, Conde, Montero-Alia, Fernández-Pedregal, Miranda-Sánchez, Llibre, Isnard, Bonet, Estrada, Prat and Clotet2024a). In a recent retrospective case notes review of patients presenting to the Hospital for Tropical Diseases, 4.8% of male patients reported erectile dysfunction, and 6.5% self-reported infertility (Warrell et al., Reference Warrell, Polley, Bodhani, Coltart, Rafferty, Nabarro, Godbole, Bustinduy, Hsieh and Chiodini2024). The full burden of MGS in non-endemic settings is yet to be established, with further studies required.

Clinical guidelines for genital schistosomiasis

Clinical guidelines are helpful tools to aid diagnosis and management. Guidelines are especially useful for presentations that are rarely encountered by individual clinicians. Guidelines for schistosomiasis in endemic areas often follow WHO recommendations, which may be more focused on presumptive treatment and mass drug administration for schistosomiasis control (World Health Organization, 2022). Therefore, guidelines for the management of genital schistosomiasis specifically may be limited. The original FGS guideline was the WHO Atlas, suggesting FGS diagnosis via colposcopy and treatment with a single dose of praziquantel (Mbabazi et al., Reference Mbabazi, Vwalika, Randrianasolo, Roald, Ledzinski, Olowookorun, Hyera, Galappaththi-Arachchige, Sebitloane, Taylor, Mhlanga, Mabote, Mocumbi, Holmen, Nemungadi, Ngcobo, Furumele, Mushangwe-Mtisi, Zwane, Mkhize-Kwitshana and Kjetland2015). Further endemic guidelines include the COUNTDOWN FGS intervention manual, developed to assist primary healthcare workers in the diagnosis and treatment of FGS in Liberia (Nganda et al., Reference Nganda, Bettee, Kollie, Nallo, Juabeh, Wright, Thomson and Dean2023). The guideline prompts clinicians to ask about FGS symptoms, with a symptom and risk factor scoring system to indicate the need for colposcopy for diagnosis, followed by treatment if any visual signs of FGS are present. In addition, a screening tool has been developed in Zambia to help identify women at risk of FGS (Rogers et al., Reference Rogers, Mwangelwa, Kabengele, Kilembe, Vwalika, Inambao, Mumba, Chanda, Secor, Musale, Himukumbwa, Parker, Tichacek, Bougouma, Allen and Wall2023). This includes using factors such as childhood exposure to lakes and streams, haematuria and occupation to guide treatment.

A literature search was conducted using PubMed and Google Scholar, searching for ‘genital schistosomiasis’, ‘guideline/s’ and ‘non-endemic’. This search identified three guidelines or clinical pathways available for FGS in non-endemic settings. The Italian consensus guideline includes a short section on FGS, suggesting colposcopy for diagnosis in at risk women (Comelli et al., Reference Comelli, Genovese, Gobbi, Brindicci, Capone, Corpolongo, Crosato, Mangano, Marrone, Merelli, Prato, Santoro, Scarso, Vanino, Marchese, Antinori, Mastroianni, Raglio, Bruschi, Minervini, Donà, Garazzino, Galli, Lo Vecchio, Galli, Dragoni, Cricelli, Colacurci, Ferrazzi, Pieralli, Montresor, Richter, Calleri, Bartoloni and Zammarchi2023). The Spanish consensus guideline also briefly includes FGS, suggesting a diagnosis of FGS should be considered for women presenting with urogenital symptoms who have had contact with freshwater in schistosomiasis-endemic countries. These guidelines also suggest that absence of ova in the urine does not preclude a diagnosis of FGS, diagnosis is based on characteristic lesions at colposcopy (Bocanegra et al., Reference Bocanegra, Álvarez-Martínez, Arsuaga Vicente, Belhassen-García, Chamorro Tojeiro, Camprubí-Ferrer, Fernández Soto, García Vázquez, Herrador Ortiz, Martín, Muro, Pérez Arellano, Reguera Gómez, Salas-Coronas, Salvador, Sotillo Gallego, Sulleiro, Torrús Tendero, Velasco Arribas and Rodríguez Guardado2023). Our group recently published an FGS clinical pathway for non-endemic settings based on results from a retrospective case notes review (Rafferty et al., Reference Rafferty, Warrell, Polley, Bodhani, Nabarro, Godbole, Bustinduy, Kjetland, Hsieh and Chiodini2025). This suggests asking all women with positive Schistosoma diagnostics about potential FGS symptoms and, if reported, referring to gynaecology for colposcopy for diagnosis, in addition to referrals to sexual health teams and urology to explore differential diagnoses and potential complications. No FGS guidelines were identified from North America or Oceania. All guidelines recommend a single dose of 40 mg kg−1 praziquantel for treatment of schistosomiasis regardless of genital manifestations.

During our search as detailed earlier, we identified no specific MGS guidelines for endemic or non-endemic settings. Consensus guidelines are urgently required to improve care of men with MGS, ensuring diagnosis, treatment and follow-up pathways that can be adapted to different clinical settings.

Barriers to care for genital schistosomiasis

Clinician knowledge

Lack of clinician knowledge of genital schistosomiasis is a major barrier to diagnosis. A cross-sectional survey for healthcare workers across Europe found that 56.3% of 581 doctors and 88% of 341 nurses surveyed were not aware of FGS (Marchese et al., Reference Marchese, Remkes, Kislaya, Rausche, Brito, Hey, Rasamoelina, Rakotoarivelo, May and Fusco2025). Over two-thirds of doctors reported no knowledge, despite the majority of respondents working in infection or gynaecology specialties. Fewer than 10% of respondents worked in sexual health, where many FGS patients may present due to the symptomology. There have been no surveys examining knowledge of MGS in non-endemic settings. Given the relative lack of MGS research and clinical guidelines, clinician knowledge of MGS is likely to be poorer than FGS. Clinician awareness and knowledge of genital schistosomiasis are critical to improving patient care. Without understanding of symptoms, clinicians are unlikely to explore the full history with patients to identify those at risk of genital schistosomiasis, especially in specialties such as infection, where genital symptoms are not commonly scrutinized. Without direct questioning, patients may not volunteer these symptoms due to stigma or lack of awareness of relevance. This is evidenced in the Barcelona cross-sectional study, whereby direct questioning about genital symptoms via a questionnaire led to a significant increase in reported genital symptoms in women with schistosomiasis compared to standard clinical review (Roure et al., 2024). Importantly, patients with genital schistosomiasis may present to non-infection specialities, including primary care, sexual health, gynaecology and urology. If these specialties have poor knowledge of genital schistosomiasis, they will be unable to identify those requiring schistosomiasis testing and referral to infection specialties for further investigation and management. To improve knowledge and awareness, education initiatives are essential. These must include teaching for non-infection specialities to increase awareness of genital schistosomiasis and highlight at-risk individuals who would benefit from testing, and the management and follow-up of such patients. In addition, training must begin at medical school, with genital schistosomiasis included on the curriculum to ensure all clinicians have some knowledge and will be able to identify patients at risk and arrange appropriate diagnosis and management steps. In recent years, more interest has been paid to specific migrant health interventions, and genital schistosomiasis could form an important component of migrant health training in the future.

Given the overall lack of knowledge of genital schistosomiasis in non-endemic areas, understanding and consistency between individual clinicians of the investigations and management of patients with genital schistosomiasis is likely to be poor. Guidelines are an important measure for improving care for those identified as at risk for genital schistosomiasis. Given the potential complications of genital schistosomiasis and the additional risk of bladder carcinoma with this urogenital disease, investigation, treatment and follow-up must be robust. As described earlier in this manuscript, three guidelines or clinical pathways specifically for non-endemic settings are available, although these may need to be tailored to each healthcare setting depending on availability of diagnostics, speciality referrals and imaging capacity (Bocanegra et al., Reference Bocanegra, Álvarez-Martínez, Arsuaga Vicente, Belhassen-García, Chamorro Tojeiro, Camprubí-Ferrer, Fernández Soto, García Vázquez, Herrador Ortiz, Martín, Muro, Pérez Arellano, Reguera Gómez, Salas-Coronas, Salvador, Sotillo Gallego, Sulleiro, Torrús Tendero, Velasco Arribas and Rodríguez Guardado2023; Comelli et al., Reference Comelli, Genovese, Gobbi, Brindicci, Capone, Corpolongo, Crosato, Mangano, Marrone, Merelli, Prato, Santoro, Scarso, Vanino, Marchese, Antinori, Mastroianni, Raglio, Bruschi, Minervini, Donà, Garazzino, Galli, Lo Vecchio, Galli, Dragoni, Cricelli, Colacurci, Ferrazzi, Pieralli, Montresor, Richter, Calleri, Bartoloni and Zammarchi2023; Rafferty et al., Reference Rafferty, Warrell, Polley, Bodhani, Nabarro, Godbole, Bustinduy, Kjetland, Hsieh and Chiodini2025). This represents an additional challenge, as a ‘one size fits all’ approach may not be suitable given the complexities of referrals and investigations required, necessitating a further process of adaptation of guidelines and pathways for each centre.

To facilitate following of guidelines, clinicians require specific skills for the diagnosis of FGS. This includes the diagnosis of FGS via colposcopy. In 2024, the first edition of an international colposcopy course for the diagnosis of FGS- and HPV-related lesions was held. This course was open to clinicians from endemic and non-endemic areas. There are currently no available courses for clinicians in non-endemic settings to learn about colposcopy for FGS.

Genital schistosomiasis diagnostics

The accuracy of schistosomiasis diagnostics has long been a barrier to the diagnosis and treatment of patients, given imperfect sensitivity and specificity (Vaillant et al., Reference Vaillant, Philippy, Neven, Barré, Bulaev, Olliaro, Utzinger, Keiser and Garba2024). In the UK, the Hospital for Tropical Diseases recommends a combination of Schistosoma serology and microscopy of urine and stool for the diagnosis of schistosomiasis, followed by imaging of specific organ systems such as ultrasound of the urinary system and colposcopy for the diagnosis of FGS. In the UK’s National Health Service, schistosomiasis serology is usually a reference laboratory test, performed in London or Liverpool, which has associated costs. Urine and stool microscopy rely on experienced biomedical scientists, and with low incidence rates in non-endemic areas, scientists may become deskilled in this essential diagnostic. Circulating anodic antigen is a useful marker of active disease but can only be performed at Leiden University Medical Centre, the Netherlands. Schistosoma-specific PCR is an emerging diagnostic, mainly used in research settings, and is available for clinical specimens via a limited number of non-endemic centres. Although PCR may represent a sensitive and specific diagnostic tool, it cannot be used to monitor treatment efficacy as DNA may be detectable even after curative treatment. In one study 24% of women with FGS were persistently PCR positive 6 months after treatment (Downs et al., Reference Downs, Kabangila, Verweij, Jaka, Peck, Kalluvya, Changalucha, Johnson, van Lieshout and Fitzgerald2013). Follow up beyond 6 months for FGS, has not been completed, and there have been no post-treatment follow up studies for MGS, so it is not currently clear how long women or men might remain PCR positive following treatment. In addition, genital lesions may persist following successful treatment and clearance of infection, and so a negative PCR does not exclude potential complications of genital schistosomiasis.

Colposcopy is currently the recommended diagnostic for FGS; however, PCR on genital samples has been validated in various studies and in many FGS studies is used as the new ‘gold standard’ for diagnosis (Kjetland et al., Reference Kjetland, Ten Hove, Gomo, Midzi, Gwanzura, Mason, Friis, Verweij, Gundersen, Ndhlovu, Mduluza and Van Lieshout2009; van Bergen et al., Reference van Bergen, Brienen, Randrianasolo, Ramarokoto, Leutscher, Kjetland, van Diepen, Dekker, Saggiomo, Velders and van Lieshout2024). Colposcopy can be subjective, relying on clinicians’ experience of FGS signs, although computer-aided diagnostic algorithms adapted from cervical cancer diagnostics are currently being explored to aid the objective diagnosis of FGS (Jin et al., Reference Jin, Noble and Gomes2023). Other than symptomology, MGS has no agreed diagnostics. PCR of semen has been successful in diagnosing MGS and is under further investigation (Kayuni et al., Reference Kayuni, Alharbi, Shaw, Fawcett, Makaula, Lampiao, Juziwelo, LaCourse, Verweij and Stothard2023). However, given very few centres offer PCR for clinical samples, these research advances are unlikely to be feasible for more widely accessible clinical use. The combination of imperfect accuracy of available investigations, with access and cost of each diagnostic, proves a challenge to diagnosis, even in high-resource settings.

Multi-speciality collaboration

The investigation and management of genital schistosomiasis requires involvement of multiple specialties, given presenting symptoms, suggested investigations and differential diagnoses. This represents a challenge as each speciality individually needs to be aware of genital schistosomiasis, its presenting symptoms, diagnosis, management and follow-up. In addition, each speciality must agree to clinical guidelines requiring their input and approve proposed patient pathways. This becomes more challenging the more additional teams are involved. The management of FGS requires involvement of at least four different specialities: infectious diseases, sexual health, gynaecology and urology to fully investigate FGS, differential diagnoses and possible complications. Each speciality must approve the guideline and patient pathway before it can be implemented, which can be a challenge to coordinate. This also represents a barrier to a universal guideline, as the approach will need to be tailored for each involved speciality in each region, depending on wait times and available diagnostics.

In addition, schistosomiasis should be included in guidelines for other specialities. Currently, schistosomiasis is mentioned as a potential cause of epididymo-orchitis in the British Association for Sexual Health and HIV guideline (Chirwa et al., Reference Chirwa, Davies, Castelino, Mpenge, Nyatsanza, Sethi, Shabbir and Rayment2021), although no further information about relevant history and investigation is provided. The National Institute of Clinical Excellence (NICE) fertility guideline does not include schistosomiasis as a potential cause of subfertility (O’Flynn, Reference O’Flynn2014). Ideally, these guidelines would be updated to highlight patients at risk of genital schistosomiasis and how to investigate.

Barriers to care for migrants

Migrants from sub-Saharan Africa are at the highest risk of genital schistosomiasis. Migrants face numerous barriers to accessing healthcare, which also need to be considered and addressed where possible when creating clinical pathways. Barriers include health literacy and knowledge of the health system in host country, language differences, documentation and legal challenges, financial barriers and unstable housing situations with need to relocate frequently, amongst many others (Lebano et al., Reference Lebano, Hamed, Bradby, Gil-Salmerón, Durá-Ferrandis, Garcés-Ferrer, Azzedine, Riza, Karnaki, Zota and Linos2020; Nowak et al., Reference Nowak, Namer and Hornberg2022). These factors affect the initial presentation to services, and retainment in follow-up. Loss to follow up is likely to be a key issue with genital schistosomiasis, given the number of different investigations and speciality reviews patients may need, and the long-term follow-up for complications that may be required. Ideally, pathways would be integrated into other services such as cervical cancer screening, sexual health screening and holistic migrant health services. In addition, transition of care between healthcare providers may be required if patients relocate during follow-up.

Barriers to care preventing patient presentation to healthcare

Along with the above-described barriers to care for migrants, multiple other barriers exist for all patients that may prevent initial presentation to healthcare. Symptoms may be mild, or ongoing for a prolonged duration and so normalized for individual patients, preventing them from seeking care. In addition, certain symptoms may be culturally normalized and so not identified as an issue requiring intervention. To combat these barriers, targeted population health education may be helpful to improve public knowledge of genital schistosomiasis and its symptoms and importantly inform patients that effective treatment exists and can prevent future complications. Stigma due to genital symptoms and complications may prevent patients from seeking healthcare and can be a prominent feature of genital schistosomiasis. Peer support from people with known genital schistosomiasis amongst high-risk populations may encourage healthcare-seeking behaviours and reduce stigma. Gender differences in healthcare-seeking behaviour are well documented, with men routinely having fewer healthcare consultations than women (Bertakis et al., Reference Bertakis, Azari, Helms, Callahan and Robbins2000; Wang et al., Reference Wang, Hunt, Nazareth, Freemantle and Petersen2013; Ballering et al., Reference Ballering, Olde Hartman, Verheij and Rosmalen2023). This may lead to underreporting of MGS and the burden of disease in men. Perhaps with improved public knowledge and peer support specifically for MGS, more men would be encouraged to present to healthcare services. It is essential to build trust and rapport between populations at risk of genital schistosomiasis and healthcare services. Successful treatment and compassionate care from clinical teams will help, alongside community education and peer support programmes. All barriers to care for genital shcistosomiasis are summarised in figure 1.

Figure 1. Schematic of patient journey for genital schistosomiasis, with associated proposed barriers to care.

Conclusions

Genital schistosomiasis is likely to be more commonly encountered in non-endemic settings with high levels of migration from sub-Saharan Africa. Improved clinician knowledge of genital schistosomiasis is essential, and genital schistosomiasis should be included in medical school curricula and through to relevant speciality training, including practical courses for skill acquisition. Given potential complications, comprehensive diagnosis, management and follow-up pathways are essential. This can represent a challenge given the lack of clinician knowledge, variability in diagnostics and multiple specialities coordinating patient pathways. Furthermore, these pathways will need to be adapted to each centre, depending on service availability. Progress has been made with published FGS clinical pathways for non-endemic settings; however, MGS is lagging behind, with no clinical guidelines yet published for endemic or non-endemic settings. Further research into genital schistosomiasis in non-endemic settings is urgently needed to fully understand the burden of disease and ensure robust patient pathways to improve the care of patients with this neglected disease.

Acknowledgements

We would like to acknowledge the patients with genital schistosomiasis included in the referenced studies.

Author contributions

HR conceived of the review and wrote the manuscript. CW, LN, GG and PLC reviewed the manuscript.

Financial support

This research received no specific grant from any funding agency, commercial or not-for-profit sectors.

Competing interests

The authors declare there are no conflicts of interest.

Ethical standards

Not applicable.

References

Ballering, AV, Olde Hartman, TC, Verheij, R, and Rosmalen, JGM (2023) Sex and gender differences in primary care help-seeking for common somatic symptoms: A longitudinal study. Scandinavian Journal of Primary Health Care 41, 132139. doi:10.1080/02813432.2023.2191653Google Scholar
Bertakis, KD, Azari, R, Helms, LJ, Callahan, EJ, and Robbins, JA (2000) Gender Differences in the Utilization of Health Care Services. Journal of Family Practice 49, .Google Scholar
Bocanegra, C, Álvarez-Martínez, MJ, Arsuaga Vicente, M, Belhassen-García, M, Chamorro Tojeiro, S, Camprubí-Ferrer, D, Fernández Soto, P, García Vázquez, E, Herrador Ortiz, Z, Martín, O, Muro, A, Pérez Arellano, JL, Reguera Gómez, M, Salas-Coronas, J, Salvador, F, Sotillo Gallego, J, Sulleiro, E, Torrús Tendero, D, Velasco Arribas, M and Rodríguez Guardado, A (2023) Executive summary consensus statement of imported diseases group (GEPI) of the Spanish Society of Infectious Diseases and Clinical Microbiology (SEIMC) and the Spanish Society of Tropical Medicine and International Health (SETMSI), on the Diagnostic and Treatment of Imported Schistosomiasis. Enfermedades Infecciosas y Microbiología Clínica 41. doi:10.1016/j.eimc.2023.02.004Google Scholar
Bowers, SF, Sonnet, F and Downs, JA (2025) Schistosomiasis: A neglected cause of infertility in females and males. Current Opinion in Infectious Diseases. doi:10.1097/QCO.0000000000001127Google Scholar
Bustinduy, AL, Randriansolo, B, Sturt, AS, Kayuni, SA, Leustcher, PDC, Webster, BL, Van Lieshout, L, Stothard, JR, Feldmeier, H and Gyapong, M (2022) An update on female and male genital schistosomiasis and a call to integrate efforts to escalate diagnosis, treatment and awareness in endemic and non-endemic settings: The time is now. Advances in Parasitology. doi:10.1016/bs.apar.2021.12.003Google Scholar
Chen, W, Flynn, EA, Shreefter, MJ and Blagg, NA (2012) Schistosomiasis: An unusual finding of the cervix. Obstetrics and Gynecology. doi:10.1097/AOG.0b013e31822da6a4Google Scholar
Chirwa, M, Davies, O, Castelino, S, Mpenge, M, Nyatsanza, F, Sethi, G, Shabbir, M and Rayment, M (2021) United Kingdom British association for sexual health and HIV national guideline for the management of epididymo-orchitis, 2020. International Journal of STD & AIDS, 32. doi:10.1177/09564624211003761Google Scholar
Christinet, V, Lazdins-Helds, JK, Stothard, JR and Reinhard-Rupp, J (2016) Female genital schistosomiasis (FGS): From case reports to a call for concerted action against this neglected gynaecological disease. International Journal for Parasitology. doi:10.1016/j.ijpara.2016.02.006Google Scholar
Comelli, A, Genovese, C, Gobbi, F, Brindicci, G, Capone, S, Corpolongo, A, Crosato, V, Mangano, VD, Marrone, R, Merelli, M, Prato, M, Santoro, CR, Scarso, S, Vanino, E, Marchese, V, Antinori, S, Mastroianni, C, Raglio, A, Bruschi, F, Minervini, A, Donà, D, Garazzino, S, Galli, L, Lo Vecchio, A, Galli, A, Dragoni, G, Cricelli, C, Colacurci, N, Ferrazzi, E, Pieralli, A, Montresor, A, Richter, J, Calleri, G, Bartoloni, A and Zammarchi, L (2023) Schistosomiasis in non-endemic areas: Italian consensus recommendations for screening, diagnosis and management by the Italian Society of Tropical Medicine and Global Health (SIMET). Infection 51, 12491271. doi:10.1007/s15010-023-02050-7Google Scholar
Downs, JA, Kabangila, R, Verweij, JJ, Jaka, H, Peck, RN, Kalluvya, SE, Changalucha, JM, Johnson, WD, van Lieshout, L and Fitzgerald, DW (2013) Detectable urogenital schistosome DNA and cervical abnormalities 6 months after single-dose praziquantel in women with Schistosoma haematobium infection. Tropical Medicine and International Health 18. doi:10.1111/tmi.12154Google Scholar
Engels, D, Hotez, PJ, Ducker, C, Gyapong, M, Bustinduy, AL, Secor, WE, Harrison, W, Theobald, S, Thomson, R, Gamba, V, Masong, MC, Lammie, P, Govender, K, Mbabazi, PS and Malecela, MN (2020) Integration of prevention and control measures for female genital schistosomiasis, HIV and cervical cancer. Bulletin World Health Organisation, 98. doi:10.2471/BLT.20.252270Google Scholar
Figueiredo, JC, Richter, J, Borja, N, Balaca, A, Costa, S, Belo, S and Grácio, MA (2015) Prostate adenocarcinoma associated with prostatic infection due to Schistosoma haematobium. Case report and systematic review. Parasitology Research. doi:10.1007/s00436-014-4250-9Google Scholar
Hawary, A, Taylor, R, McEwans, A and Napier-Hemy, R (2012) Change of semen quality after foreign travel: A rare presentation of genital schistosomiasis. International Urology & Nephrology 44. doi:10.1007/s11255-010-9816-6Google Scholar
IARC, 1994. Schistosomes, Liver Flukes and Helicobacter pylori. IARC Monogr Eval Carcinog Risks Hum. https://doi.org/PMID7715068 (acccessed 5 8 2025).Google Scholar
Jin, E, Noble, JA and Gomes, M, 2023. A Review of Computer-Aided Diagnostic Algorithms for Cervical Neoplasia and an Assessment of Their Applicability to Female Genital Schistosomiasis. Mayo Clinic Proceedings: Digital Health 1. doi: 10.1016/j.mcpdig.2023.04.007Google Scholar
Kayuni, SA, Alharbi, MH, Shaw, A, Fawcett, J, Makaula, P, Lampiao, F, Juziwelo, L, LaCourse, EJ, Verweij, JJ and Stothard, JR (2023) Detection of Male Genital Schistosomiasis (MGS) by Real-time TaqMan® PCR Analysis of Semen from Fishermen along the Southern Shoreline of Lake Malawi. Heliyon 9. doi: 10.1016/j.heliyon.2023.e17338.Google Scholar
Kayuni, S, Lampiao, F, Makaula, P, Juziwelo, L, Lacourse, EJ, Reinhard-Rupp, J, Leutscher, PDC and Stothard, JR (2019) A systematic review with epidemiological update of male genital schistosomiasis (MGS): A call for integrated case management across the health system in sub-Saharan Africa. Parasite Epidemiology and Control. doi:10.1016/j.parepi.2018.e00077Google Scholar
Kini, S, Dayoub, N, Raja, A, Pickering, S and Thong, J (2009) Schistosomiasis-induced male infertility. BMJ Case Reports. doi:10.1136/bcr.01.2009.1481Google Scholar
Kjetland, EF, Kurewa, EN, Mduluza, T, Midzi, N, Gomo, E, Friis, H, Gundersen, SG and Ndhlovu, PD (2010) The first community-based report on the effect of genital Schistosoma haematobium infection on female fertility. Fertil Steril 94. doi: 10.1016/j.fertnstert.2009.12.050.Google Scholar
Kjetland, EF, Leutscher, PDC and Ndhlovu, PD (2012) A review of female genital schistosomiasis. Trends in Parasitology. doi:10.1016/j.pt.2011.10.008Google Scholar
Kjetland, EF, Ten Hove, RJ, Gomo, E, Midzi, N, Gwanzura, L, Mason, P, Friis, H, Verweij, JJ, Gundersen, SG, Ndhlovu, PD, Mduluza, T and Van Lieshout, L (2009) Schistosomiasis PCR in vaginal lavage as an indicator of genital Schistosoma haematobium infection in rural Zimbabwean women. American Journal of Tropical Medicine and Hygiene. doi:10.4269/ajtmh.2009.09-0081Google Scholar
Laroche, J, Mottet, N, Malincenco, M, Gay, C, Royer, PY and Riethmuller, D (2016) Successive ectopic pregnancies associated with tubal shistosomiasis in a French woman. European Journal of Obstetrics & Gynecology and Reproductive Biology 206. doi:10.1016/j.ejogrb.2016.07.192Google Scholar
Lebano, A, Hamed, S, Bradby, H, Gil-Salmerón, A, Durá-Ferrandis, E, Garcés-Ferrer, J, Azzedine, F, Riza, E, Karnaki, P, Zota, D and Linos, A (2020) Migrants’ and refugees’ health status and healthcare in Europe: A scoping literature review. BMC Public Health 20. doi:10.1186/s12889-020-08749-8Google Scholar
Marchese, V, Remkes, A, Kislaya, I, Rausche, P, Brito, A, Hey, JC, Rasamoelina, T, Rakotoarivelo, RA, May, J and Fusco, D (2025) Awareness and knowledge regarding female genital schistosomiasis among European healthcare workers: A cross-sectional online survey. Global Health 21, 2. 10.1186/s12992-024-01095-zGoogle Scholar
Mbabazi, PS, Vwalika, B, Randrianasolo, BS, Roald, B, Ledzinski, D, Olowookorun, F, Hyera, F, Galappaththi-Arachchige, HN, Sebitloane, M, Taylor, M, Mhlanga, RE, Mabote, S, Mocumbi, S, Holmen, SD, Nemungadi, TG, Ngcobo, TV, Furumele, T, Mushangwe-Mtisi, V, Zwane, ZM, Mkhize-Kwitshana, ZL and Kjetland, EF, 2015. World Health Organisation Female genital schistosomiasis. A pocket atlas for clinical health-care professionals, WHO/HTM/NTD/2015.4.Google Scholar
McAuliffe, M and Oucho, LA, 2024. World Migration Report 2024.Google Scholar
Miller-Fellows, SC, Howard, L, Kramer, R, Hildebrand, V, Furin, J, Mutuku, FM, Mukoko, D, Ivy, JA and King, CH (2017) Cross-sectional interview study of fertility, pregnancy, and urogenital schistosomiasis in coastal Kenya: Documented treatment in childhood is associated with reduced odds of subfertility among adult women. PLoS Neglected Tropical Diseases. doi:10.1371/journal.pntd.0006101Google Scholar
Nganda, M, Bettee, AK, Kollie, K, Nallo, GE, Juabeh, M, Wright, A, Thomson, R and Dean, L (2023) Incorporating the diagnosis and management of female genital schistosomiasis in primary healthcare in Liberia: A mixed methods pilot study. International Health 15. doi:10.1093/inthealth/ihad006Google Scholar
Nowak, AC, Namer, Y and Hornberg, C (2022) Health Care for Refugees in Europe: A Scoping Review. International Journal of Environmental Research and Public Health. doi:10.3390/ijerph19031278Google Scholar
O’Flynn, N (2014) Assessment and treatment for people with fertility problems: NICE guideline. British Journal of General Practice. doi:10.3399/bjgp14X676609Google Scholar
Patel, P, Rose, CE, Kjetland, EF, Downs, JA, Mbabazi, PS, Sabin, K, Chege, W, Watts, DH and Secor, WE (2021) Association of schistosomiasis and HIV infections: A systematic review and meta-analysis. International Journal of Infectious Diseases 102. doi:10.1016/j.ijid.2020.10.088Google Scholar
Pérignon, A, Pelicot, M and Consigny, PH (2007) Genital schistosomiasis in a traveler coming back from Mali. Journal of Travel Medicine 14. doi:10.1111/j.1708-8305.2007.00124.xGoogle Scholar
Rafferty, H, Sturt, AS, Phiri, CR, Webb, EL, Mudenda, M, Mapani, J, Corstjens, PLAM, van Dam, GJ, Schaap, A, Ayles, H, Hayes, RJ, van Lieshout, L, Hansingo, I and Bustinduy, AL (2021) Association between cervical dysplasia and female genital schistosomiasis diagnosed by genital PCR in Zambian women. BMC Infectious Diseases 21. doi:10.1186/s12879-021-06380-5Google Scholar
Rafferty, H, Warrell, CE, Polley, S, Bodhani, R, Nabarro, LE, Godbole, G, Bustinduy, AL, Kjetland, EF, Hsieh, MH and Chiodini, PL (2025) Female genital schistosomiasis (FGS) in a non-endemic setting: Retrospective case-notes review of Schistosoma haematobium positive FGS cases at the Hospital for Tropical Diseases, London, with pragmatic clinical pathway for non-endemic settings. Open Forum Infectious Diseases. doi:10.1093/ofid/ofaf180Google Scholar
Richter, J, Kayuni, SA, Stothard, JR, Ramarokoto, , Lindner, AK, Fusco, D, Feldmeier, H, Bustinduy, AL and Friedman, JF (2025) Description of four cases of male genital schistosomiasis (MGS) in children and adolescents, with a scoping review. Parasitology, 110. doi:10.1017/S0031182025000241Google Scholar
Rogers, EQ, Mwangelwa, S, Kabengele, C, Kilembe, W, Vwalika, B, Inambao, M, Mumba, K, Chanda, C, Secor, WE, Musale, V, Himukumbwa, C, Parker, R, Tichacek, A, Bougouma, K, Allen, S and Wall, KM (2023) Developing and validating a screening tool for female genital schistosomiasis in urban Zambia. Frontiers in Tropical Diseases 4. doi: 10.3389/fitd.2023.1308129.Google Scholar
Roure, S, Pérez-Quílez, O, Vallès, X, Valerio, L, López-Muñoz, I, Soldevila, L, Torrella, A, Fernández-Rivas, G, Chamorro, A and Clotet, B (2022) Schistosomiasis Among Female Migrants in Non-endemic Countries: Neglected Among the Neglected? A Pilot Study. Front Public Health 10. doi:10.3389/fpubh.2022.778110Google Scholar
Roure, S, Vallès, X, Pérez-Quílez, O, López-Muñoz, I, Chamorro, A, Abad, E, Valerio, L, Soldevila, L, España, S, Hegazy, AHA, Fernández-Rivas, G, Gorriz, E, Herena, D, Oliveira, M, Miralles, MC, Conde, C, Montero-Alia, JJ, Fernández-Pedregal, E, Miranda-Sánchez, J, Llibre, JM, Isnard, M, Bonet, JM, Estrada, O, Prat, N and Clotet, B (2024a) Male genitourinary schistosomiasis-related symptoms among long-term Western African migrants in Spain: A prospective population-based screening study. Infectious Diseases of Poverty 13. doi:10.1186/s40249-024-01190-8Google Scholar
Roure, S, Vallès, X, Pérez-Quílez, O, López-Muñoz, I, Chamorro, A, Abad, E, Valerio, L, Soldevila, L, Gorriz, E, Herena, D, Pedregal, EF, España, S, Serra, C, Cera, R, Rodríguez, AM, Serrano, L, Falguera, G, Hegazy, AHA, Fernández-Rivas, G, Miralles, C, Conde, C, Montero-Alia, JJ, Miranda-Sánchez, J, Llibre, JM, Isnard, M, Bonet, JM, Estrada, O, Prat, N, Clotet, B, Riera, M, Rovira, N, Segura, M, Escoda, S, Villalaz-Gonzales, JK, Jesús Delgado, M, Ferre-García, I, Santamaria, S and Matero, M (2024b) Female genitourinary schistosomiasis-related symptoms in long-term sub-Saharan African migrants in Europe: A prospective population-based study. Journal of Travel Medicine, 31. doi:10.1093/jtm/taae035Google Scholar
Sturt, A, Omar, T, Hansingo, I, Kamfwa, P, Bustinduy, A and Kelly, H (2025) Association of female genital schistosomiasis and human papillomavirus and cervical pre-cancer: A systematic review. Analysis of 922 Patients from the Spanish VACH Cohort. BMC Womens Health 25, 2. doi:10.1186/s12905-024-03514-0Google Scholar
Vaillant, MT, Philippy, F, Neven, A, Barré, J, Bulaev, D, Olliaro, PL, Utzinger, J, Keiser, J and Garba, AT (2024) Diagnostic tests for human Schistosoma mansoni and Schistosoma haematobium infection: A systematic review and meta-analysis. Lancet Microbe 5. doi:10.1016/S2666-5247(23)00377-4Google Scholar
van Bergen, KJM, Brienen, EAT, Randrianasolo, BS, Ramarokoto, CE, Leutscher, P, Kjetland, EF, van Diepen, A, Dekker, F, Saggiomo, V, Velders, AH and van Lieshout, L (2024) Next step towards point-of-care molecular diagnosis of female genital schistosomiasis (FGS): Evaluation of an instrument-free LAMP procedure. Frontiers in Parasitology 3. doi:10.3389/fpara.2024.1297310Google Scholar
Wang, Y, Hunt, K, Nazareth, I, Freemantle, N and Petersen, I (2013) Do men consult less than women? An analysis of routinely collected UK general practice data. BMJ Open 3. doi:10.1136/bmjopen-2013-003320Google Scholar
Warrell, CE, Polley, S, Bodhani, R, Coltart, CEM, Rafferty, H, Nabarro, LE, Godbole, G, Bustinduy, AL, Hsieh, MH and Chiodini, PL (2024) Urogenital Schistosoma haematobium cases at the Hospital for Tropical Diseases, London (1998-2018), and suggested pragmatic follow-up pathway for non-endemic settings. Open Forum Infectious Diseases, 12. doi:10.1093/ofid/ofae759Google Scholar
World Health Organization (2022) WHO Guideline on Control and Elimination of Human Schistosomiasis. [WWW Document]. WHO Guideline on Control and Elimination of Human Schistosomiasis Geneva.Google Scholar
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Figure 1. Schematic of patient journey for genital schistosomiasis, with associated proposed barriers to care.