Female Genital Schistosomiasis
Female genital schistosomiasis, or FGS, is a result of an infection with schistosomes that impacts women and adolescent girls. These females typically live in areas where schistosomiasis is prevalent in sub-Saharan Africa. Schistosomiasis is a parasitic infection that is transmitted by snails found in freshwater. Women are exposed to immature stages of this parasite when they go about their daily chores like bathing children or washing clothing. The immature parasites penetrate their skin, and over time, if they remain untreated, adult parasites release eggs that can be deposited into the genital and reproductive tracts of infected people. This can lead to itching, pain, and in some cases, even infertility. To make matters worse, when women seek care for the symptoms they’re experiencing, they can be misdiagnosed as having a sexually transmitted infection based on their symptoms when in fact, it’s just a result of their exposure to a local water source.
It's estimated that anywhere between 50 to 65 million women are affected by FGS.
It’s difficult to diagnose because symptoms are often confused for STIs (sexually transmitted illnesses) and the standard method for diagnosis is colposcopy, which is invasive, expensive and unavailable at most primary health care facilities. In fact, most primary health care centers are not aware FGS, let alone how to diagnose and treat it. Treatment is simple, but if you can’t get a diagnosis, you won’t get the right treatment.
The currently recommended treatment strategy is a single dose of a drug called praziquantel. When FGS is treated early, praziquantel treatment kills the worms and reduces many of the symptoms and lesions that are associated with FGS.
What are the challenges in treating FGS?
While there is a diagnostic test, colposcopy, which can detect FGS, it is invasive, expensive and unavailable at many primary health care facilities. In fact, most primary health care centers are not aware FGS, let alone how to diagnose and treat it.
Another challenge is that the current control strategy for schistosomiasis relies on school-based delivery of praziquantel to children, but the critical population of adolescent girls and women who are at risk of FGS are usually left behind.
What research is being done to help over come these challenges and move FGS toward elimination?
FGS was first recognized in the 1950s; however, most published studies were case reports until the 1990’s when scientists began to investigate possible links between FGS and the acquisition of HIV.
Fast-forward to 2019--COR-NTD convened the NTD community to identify and prioritize FGS research questions. After an open call for research proposals, ten studies with support from U.K. Aid from the U.K. Government were initiated. These studies focused on a broad set of issues that prevented women from obtaining appropriate diagnosis and treatment.
Research Study Details
- Bringing Down Hurdles for Female Genital Schistosomiasis Access to Care: A Multi-Country Socio-Structural Integrated Approach to Developing A Community-Based Teaching Platform
- Improving female genital schistosomiasis diagnosis within comprehensive reproductive health services in Zambia
- Female Genital Schistosomiasis in rural Madagascar: improving community understanding and promoting integration into primary health care services- FIRM-UP
- Concerted Action on Female Genital Schistosomiasis and Gynecological Diseases in Cameroon: Integrating Precision Mapping of Urogenital Schistosomiasis with Rapid Assessment of FGS for Better Community Management of Gynecological Diseases
- Integrating Preventive Treatment for Female Genital Schistosomiasis within the National Health System: a Pilot Study in Cote d’Ivoire
- Leveraging the experience of community-based HIV prevention responses for increasing awareness and demand for FGS prevention, diagnosis and treatment
Outcomes and Next Steps
On June 7-8, 2022, investigators who had received RFP funding and other stakeholders gathered to:
- share results from the different FGS studies
- discuss which approaches to addressing stigma and reach more women were successful and feasible
- determine what gaps in operational research still exist
- outline necessary next steps.
The meeting report outlines the following future research objectives in further detail:
1. What is the relative burden of FGS in comparison to schistosomiasis prevalence?
2. What clinical approaches to FGS diagnosis are acceptable to women and able to be carried out by practitioners?
3. Is integration into the national healthcare system and HIV/Sexual Reproductive Health (SRH) services feasible?
4. Identifying remaining gaps in research and operational research priorities