By Caroline Katana
For years, Asha Suleiman “not her real name ” lived in agony , each trip to the toilet meant unbearable pain, and urinating became a torment , People told me I had been bewitched,” she recalls from her home in Msambweni, Kwale County.
What Asha didn’t know was that she was suffering from Female Genital Schistosomiasis (FGS), a neglected tropical disease caused by parasitic worms found in contaminated freshwater.Â
Like many women along Kenya’s Coast, she relied on ponds and rivers for household water, the very source of her suffering.
“The pain was too much, my neighbors advised me to drink boiled guava leaves or visit a traditional healer, but nothing worked. When I finally went to the hospital, the examination was painful, but I was relieved to learn what was wrong with me,” she said.
Asha began taking praziquantel, the only known medicine for FGS, but after several months, she was told to buy it herself, something she couldn’t afford.
“I had to stop the treatment because I didn’t have the money. I wish the government could provide free treatment because many women are suffering silently,” she explained.
Even after partial recovery, she still experiences irritation when urinating.
“I told my husband about it, but first, he wanted me to go to a traditional healer. When I didn’t get better, he finally allowed me to visit the hospital,” she says.
Doctors told her the infection came from exposure to stagnant water.
“We use well water for drinking, but for bathing and washing, we fetch from ponds. That’s how many of us get infected,” she adds.
Another survivor, Mwanaisha Abdalla Wendo, 35, from Vingujini village in Msambweni, has lived with the disease since her teenage years.
 “When I was about 18, I started feeling pain when urinating. My private parts itched constantly, but I thought it was just an infection. I tried painkillers and herbs, but nothing worked,” she recalls.
FGS survivor, Mwanaisha Abdalla Wendo
Her condition worsened after marriage.
 “During intimacy, I felt unbearable pain as if it was my first time. Later, I started urinating blood,” she says.
Years later, while volunteering as a community health promoter under the Amref Health Africa FGS program, Wendo discovered that the symptoms described during health training matched hers. She went for testing, and the results confirmed her fears.
 “I was given six tablets of praziquantel. After three months, the pain and itching reduced, and I could finally be intimate with my husband without pain,” she says.
But the disease had already taken a toll.
“My husband almost married another woman because of my condition. The doctor told me FGS can cause infertility. I only have one child, but I’m grateful I’m now healing,” says Wendo.
She now works as a community health promoter to spread awareness about the disease.
 “Many women confuse it with sexually transmitted infections. We urge them to visit hospitals for proper screening,” she adds.
Amref Health Africa has become a crucial partner in the fight against FGS in Kwale and other coastal counties.
 The organization works with the County Department of Health to train healthcare workers, strengthen diagnosis and reporting, and ensure access to medication.
Msambweni sub-county neglected tropical diseases (NTD) coordinator Hilda Mahenzo, says Amref’s intervention has been a game changer.
“Before Amref’s involvement, many women were misdiagnosed with STIs. Through training and community awareness, health workers can now identify FGS early and manage cases appropriately,” she says.
Amref has stepped in research and supported community outreaches to educate residents about prevention.
 “We’re working closely with local leaders and community health promoters to demystify FGS and break the stigma,” Mahenzo adds.
Msambweni sub-county neglected tropical diseases (NTD) coordinator, Hilda Mahenzo
Dr. Jasper Muriphe Mwahanje, a medical officer at Samburu Sub-County Hospital, says the disease remains one of Kenya’s most underreported health threats.
“The worms enter the body through the skin when people come into contact with contaminated water. Many women suffer in silence because their symptoms mimic STIs or HPV infections,” he explains.
He proposed  FGS to be included in routine reproductive health services.
 “When women come for cervical cancer screening or STI tests, they should also be checked for FGS. Early detection can save lives,” he says.
Dr. Mwahanje adds that integrating the disease into routine health programs would ensure it is no longer ignored.
 “The drug works well, but access is still limited. Government and partners should prioritize free treatment, especially in high-risk areas like Kwale,” he emphasizes.
Dr. Mwahanje notes that while there’s limited data on FGS in Kenya, across Sub-Saharan Africa an estimated 56 million women are at risk.
“The disease not only affects the genital system but can also damage other organs like the intestines. The drug praziquantel works, but access remains a challenge,” he adds.
He says the county has intensified screening and awareness campaigns, including involving men to be screened and community health promoters in identifying symptoms at the grassroots level.
“No one should ignore the signs; anyone experiencing itching, pain, or blood in urine should visit a hospital immediately,” he advises.
Female Genital Schistosomiasis continues to rob women of their health, dignity, and in many cases, their marriages and fertility.
Despite its devastating effects, the disease remains hidden behind cultural taboos and a lack of awareness.
Through community health workers and local campaigns, Amref Health Africa and the Kwale County Government are determined to change that narrative — one woman at a time.
“We are making progress; the more people talk about FGS, the easier it becomes to detect, treat, and ultimately eliminate it,” she said.
For Asha, the survivor from Msambweni, that hope means everything.
“If treatment and testing were free, many women would be saved from unnecessary pain. No woman should have to suffer in silence again,” she said.
