Silent Struggle: Her Journey Through Urogenital Tuberculosis Reveals Urgency in Timely Diagnosis

By Chemtai Kirui | phillykirui@gmail.com

Sixty-three-year-old Community Health Volunteer, Emily (a pseudonym), has not had an easy adulthood.

At the age of 46, she received a diagnosis of Human immunodeficiency virus (HIV) — an infection that attacks the body’s immune system.

Following a period of denial and depression, she eventually accepted her HIV status and started living positively. However, two years later, in 2008, when she began feeling unwell, she visited the hospital, this time, she received a diagnosis of tuberculosis.

Tuberculosis (TB) is triggered by a bacterium known as Mycobacterium tuberculosis. While the bacteria primarily target the lungs, causing Pulmonary TB, they can also affect any other part of the body, excluding the hair and nails— leading to Extra-pulmonary TB.

“During that time, when the doctor informed me of my TB diagnosis and explained the need for medication, acceptance wasn’t difficult,” Emily said during the interview.

She said that her active involvement in an HIV support group, provided the necessary support to navigate the subsequent stages of her HIV/TB coinfection.

After successful treatment, Emily was declared free from TB and assumed the role of TB Champion.

In 2014, complications in her urinary system emerged, causing infections and discomfort in her abdomen.

“The doctor kept noticing that I would get one infection after another, and even after treatment, they just kept coming back,” Emily said. “I used to wonder, what kind of infection is this?”

Despite continuous medical attention, the underlying issue remained unidentified.

Emily said that her visits to the hospital continued for several years until the end of 2018 when she became critically ill, to the point of developing high blood pressure.

“It was during this time that the doctor I had been seeing for years became concerned and decided to refer me to a medical consultant here in Kajiado county,” she said.

During this consultation, the new doctor closely examined Emily’s medical history, focusing on her persistent urinary complications.

“After the check-up, the doctor told me that the problem is with my urinal system,” Emily said. “So, he sent me to Lancet in Nairobi city for more tests.”

Following the urinal test at Lancet, a diagnostic, monitoring, and screening laboratory with pathologists, she was diagnosed with Urogenital Tuberculosis.

The aftermath of a delayed diagnosis of Urogenital TB can be profound, leading to complications such as urinary incontinence —a reality that Emily is living with.

“I have to use adult diapers now because I lost control of my bladder,” Emily said with a shaky voice.

Emily lives in Kajiado, a rural area where small hospitals with minimal facilities are, and service delivery for complicated diagnosis like extra pulmonary Tuberculosis, often go unnoticed. She is one of about 20% of the global Tuberculosis patients diagnosed with Extra pulmonary TB, considered a rare form of TB.

Impact of delayed diagnosis

Now, concerns are mounting over the battle against this disease in Kenya, attributed to delays in diagnosis, which create a gap between the onset of symptoms and the confirmation of TB, during which patients might unknowingly transmit the disease to others.

“This diagnostic delay issue is particularly significant for Kenya given its high ranking among the 30 countries contributing to 80% of the global TB burden.” said Nkirote Mwiringi, the National Coordinator for Public-Private Collaborations, Human Rights, and Gender at the National TB Program, Ministry of Health, Kenya.

She said that one of the government’s significant challenges in addressing TB is that a substantial portion of cases seeking care does not receive timely attention during their initial contact with healthcare providers.

“This becomes a problem, considering TB ranks as the fourth leading cause of death in the country,” Mwiringi said.

According to the 2023 Global tuberculosis report by World Health Organization,1.3 million people worldwide succumbed to TB in 2022. An estimated 10.6 million people fell ill with tuberculosis (TB) worldwide, including 5.8 million men, 3.5 million women and 1.3 million children.

“This infectious disease requires early identification and treatment to prevent complications and long-term health effects,” said Dr. Jeremiah Chakaya Muhwa, a pulmonologist and founding member of the Respiratory Society of Kenya (ReSoK).

However, he noted that the diagnosis of extra-pulmonary TB  is challenging, and delays might occur due to nonspecific symptoms.

“The difficulty intensifies in areas with limited diagnostic capacities, often requiring the referral of patients to higher-level facilities for appropriate testing,” Chakaya said.

The impact of delayed diagnosis on Emily’s daily life is palpable.

“When the doctors told me it was Urogenital TB, they started me on TB treatment, and within 6 months, I was cured,” Emily shared. “But, during that time, we didn’t realize that the TB had already spread to my bladder and kidneys.”

After being declared TB-free for the second time in her life, Emily’s health challenges persisted. She continued to experience pain, and her blood pressure remained high. Her second doctor recommended consulting a urologist for a more in-depth examination.

“The urologist sent me for a scan, and it showed that my kidneys were affected. As the doctor tried to figure out the best way to address my kidney issues, I started having uncontrollable urine flow,” she said.

Emily underwent a procedure to insert a ureteral stent — a small tube placed in the ureter, to connect the kidney to the bladder. This stent helps maintain the flow of urine from the kidney to the bladder and is often used to address issues such as blockages or obstructions.

After the procedure, a follow-up for a second round of insertion was scheduled two months later.

“On the second try, the stent insertion on my left Kidney gave some trouble, so they did more tests. As a result, my urologist referred me to Kenyatta Hospital,” she said.

This referral by her third doctor marked the moment when Emily transitioned from local county-level doctors to specialists at Kenyatta National Hospital, a public tertiary referral hospital under the Ministry of Health.

Emily said she was shocked to learn that her left kidney had become non-functional. Though it remains in place for now, doctors at Kenyatta Hospital continue to monitor her right kidney.

According to Dr. Leyla Abdulahi, a practicing epidemiologist and research scientist at the African Institute for Development Policy (AFIDEP), there is a gap between the intended capacity for TB care in the country and the actual number of clinics actively offering these services.

“Recent data indicates that, out of the theoretically designated 10,000 clinics for TB care across six levels of health facilities, only approximately 6,000 are actively providing TB services,” said Dr. Abdulahi.

She said that this statistics demonstrates limitations in the healthcare system’s ability to provide comprehensive TB care.

The Silent Spread of Urogenital Tuberculosis

Urogenital tuberculosis is a type of tuberculosis (TB) that affects the parts of our body responsible for urine and reproduction.

A study published by Nature Reviews indicates that, ‘A substantial proportion of patients presenting with extrapulmonary TB have urogenital TB (UG-TB), which can easily be overlooked owing to non-specific symptoms, chronic and cryptic protean clinical manifestations and lack of clinician awareness of the possibility of TB.’

“We find that Urogenital TB is more frequently observed in women than in men,” said Duncan Barkebo, a clinical provider and mentor specializing in Tuberculosis (TB) at the Center for Health Solutions in Kenya.

Barkebo said that the primary concern associated with Urogenital TB is infertility. This not only impacts the individual but also extends to their family and the wider community, noting that, in some instances, the condition might be mistakenly attributed to other reproductive issues, such as fibroids or blocked tubes.

Emily said that this disease presents other unique challenges for women, especially dealing with the stigma it carries.

“The stigma is there. As an adult buying diapers, and also looking at my role as a community health volunteer, I’m wary of people knowing the full extent of my condition. I don’t want them to view me differently, judging me because I have to wear diapers. That’s why I choose to conceal my identity,” she said, adding that the situation has taken a toll on her mental well-being.

“I don’t feel comfortable as a woman anymore. Wearing diapers all the time diminishes the family aspect,” she said. “There are things I have been wanting to do, but this disease makes me feel like my hands are tied, and I can’t pursue my aspirations.”

Emily notes that for the few people who know her situation, she can see how they look at her with pity, and that makes her uncomfortable too.

“I avoid visiting people, and if I do, I only stay for a few minutes and leave. Because of my situation, I don’t want to excuse myself to go and change. I don’t feel comfortable, so this disease makes you feel so lonely.” She said.

“It’s crucial to recognize the unique challenges women face, particularly in societies where women often bear the primary responsibility for home management.” Dr. Chakaya said, “If a woman is affected by TB, it can have significant consequences for the entire household, affecting children, neighbors, and the woman herself and perpetuating stigma. This adds to the disproportionate impact of TB on women.”

The Cost Implication

“For the adult diapers, it costs KES150; there is no cheaper alternative, and I have to use them day and night, every day,” said Emily, while looking at the tangible cost of Urogenital TB. “You cannot go a day without them; you will soil yourself, and that brings about stigma.”

Emily said that she always needs to have money in her pocket due to frequent travel from Kajiado county to Nairobi, where Kenyatta Hospital, the only facility capable of addressing her complication, is located.

This movement from a rural area to the city center for medical care incurs additional costs.

“Yes, I do have the National Health Insurance Fund (NHIF), but the cover doesn’t cater for everything, even at the public hospital.” Emily said, adding that, “I have had to sell things in the house, rely on friends, well-wishers, family members, and that is a problem. I am straining.”

Despite her low income, these are necessities she must bear to cope with the aftermath of delayed TB diagnosis.

Although TB treatment in the country is covered by the government, a survey done in 2018 by the ministry of health in collaboration with the World Health Organization indicated that ‘there are costs which the patient has to incur, including transport to the hospital, buying food for nutritional support, and purchasing other medicines for side effects.‘

“Because the poor are mainly affected by Tuberculosis in Kenya, this additional burden makes it hard to sustain effective TB treatment,” said Chakaya, a former president of the International Union Against Tuberculosis and Lung Disease, noting that there is an imperative need for robust support systems.

“It is crucial to mobilize resources to alleviate the economic strain associated with TB,” he said. “The government needs to increase resource allocation, recognizing the critical role of financial support in mitigating the challenges posed by delayed TB diagnosis.”

This sentiment was backed by Peter Sands, the executive director of the Global Fund to Fight AIDS, Tuberculosis, and Malaria, who said that ultimately, the solutions to overcome these diseases and establishing sustainable health systems does not solely rely on donor funds.

“While donor funds can pave the way, long-term support for health systems must come from domestic resource mobilization.” Sands said during an exclusive interview with Kass media, held at the sidelines of the UN Climate talk of COP 28 in Dubai.

He said that the ongoing reforms and actions taken in Kenya and other African countries to enhance fiscal mobilization and budgeting for health are critical — “that’s where the long-term sustainable answer to these challenges lies.”

The Human Rights barrier to Seeking TB Care

“Individuals need to be aware of their rights, including the right to health, the right to access medicines, and the right to be treated with dignity,” said Chakaya, noting that not everyone is aware of these rights, and “there is a need for increased awareness and practice.”

He said that healthcare workers are trained in a rights-based approach to TB care and prevention services, and they need continuous education on it.

Dr. Lorraine Mugambi, the Chief of Party at the Center for Health Solutions, shed light on the effectiveness of treatment protocols in Kenya.

She said that 85% of TB patients who receive proper treatment successfully recover, highlighting the effectiveness of the existing protocols. However, despite this success, the prevailing social stigma surrounding TB remains a significant challenge.

“The lack of knowledge is a key instigator of TB stigma, perpetuating the reluctance of individuals to seek medical help,” said Dr. Mugambi.

She also noted that one in 3 people in Africa is affected by the bacteria that causes Tuberculosis, posing a significant concern for a country that still stigmatizes people seeking care for TB.

Mugambi said that addressing stigma and discrimination is crucial in TB care, and that preventing discrimination based on TB status is essential for fostering inclusive societies — ensuring individuals affected by TB are not isolated.

The healthcare workers who contributed to this report said that individuals facing stigma and discrimination encounter situations that violate fundamental human rights principles.

Good News

There is encouraging news in the fight against Tuberculosis.

“Urogenital TB may lead to localized spread to neighboring organs, necessitating surgical intervention. However, following successful TB treatment, reconstructive surgery becomes a viable option, offering hope for addressing complications,” said Duncan Barkebo from CHS.

He said that despite its challenges, “TB is a treatable disease, and early diagnosis, combined with effective treatment, do result in full recovery.”

A recent development involving The Global Fund, the Stop TB Partnership, and USAID collaborating with Danaher Corporation (Danaher), a global science and technology innovator, aims to reduce the cost and enhance accessibility of ultra diagnostic test cartridges. This initiative holds promise of expediting TB diagnosis and making medications more affordable and available to everyone.

In her clinical visits and as a Community Health Volunteer, Emily has encountered women silently facing complications stemming from urogenital TB — speaking out helps these women not feel alone in their battle.

“I hope that my story will raise awareness about the various forms of Tuberculosis and let others know they are not battling this disease alone.” Emily said.

Her journey, from facing a dual diagnosis to experiencing diagnostic delays, and now navigating a lifetime of treatment and care in her advancing age, showcases the pressing need for cross-cutting collaboration in adopting an inclusive and equitable approach to TB care.

“I want people to realize that Urogenital TB is present among us, and, as a community health volunteer, I know that it is curable; one simply needs to find treatment sooner rather than later.” Emily said.

Kass Media has concealed the identity of the woman in the story to ensure her protection and adhere to anonymity guidelines.

This story was written and produced as part of a media skills development programme
delivered by Thomson Reuters Foundation. The content is the sole responsibility of the author
and the publisher.