The Price of Pain:

For five years, Nakiwala Rehema has lived with a pain she cannot escape.

Every month when her period arrives, it brings more than discomfort. It brings days of heavy bleeding, weakness, hospital visits, borrowed money and the fear that her body may once again fail her.

“I would bleed for almost a week and some days,”  Nakiwala recalls. “The bleeding was too much. I could feel sick, lose energy and I couldn’t do things on my own.”

At first, she thought it was just a difficult menstrual cycle.

She had no reason to believe otherwise.

Like many young women in Uganda,  Nakiwala had grown up knowing that menstruation comes with pain. But what she experienced was different. It was not the ordinary discomfort she had been told to expect.

It was something much bigger.

The turning point came in 2021 during her Senior Six vacation. After her period started, the bleeding continued for days without stopping.

“I told my mom because I didn’t know what was wrong with me. The only thing I could see was a lot of bleeding and losing energy,”  Nakiwala says

Initially, her mother tried to reassure her.

But the situation became frightening.

“I reached a point where I couldn’t even stand by myself. I couldn’t tell where the problem was. That is when they took me to hospital,” she explains

That hospital visit would begin a journey that would consume her finances, affect her career and change how she viewed her own body.

For Rehema, the disease was not only about physical pain.

It became a financial struggle.

“I spent about Shs500,000 on medication by the time I went there. I had to pay consultation fees sometimes Shs100,000, Shs150,000 or Shs200,000 before anything.”

At the time, she was still a student with no stable income.

The first person who helped her pay her medical bills was a friend.

“By the time I got it, I was still in my Senior Six vacation. I wasn’t working. The first time it was a friend who paid my bills.”

Years later, treatment continues to depend on borrowed money and support from others.

“Most of the time it has been me and friends. I’ve borrowed money so many times for treatment.”

But the cost of endometriosis has gone beyond hospital bills.

It has affected her work, relationships and emotional wellbeing.

Rehema says living with a condition that constantly interrupts her life has made employment difficult.

“Someone will not be patient with you. You have a job and your employer is not your father. They need someone productive.”

Her frequent illness eventually contributed to losing her job.

“I will not be very effective because of my condition. That is one of the reasons why I have lost my job.”

The disease has also changed her social life.

“Sometimes I isolate myself because it brings trauma, emotional torture. I’ve lost friends.”

Rehema’s story reflects the hidden reality of thousands of women across Uganda living with endometriosis a condition that remains poorly understood, underdiagnosed and expensive to manage.

According to the World Health Organization (WHO), endometriosis affects approximately one in every ten women and girls of reproductive age worldwide, representing about 190 million people globally. Despite its prevalence, many women wait years before receiving a diagnosis because symptoms are often dismissed as normal menstrual pain.

In Uganda, the exact number of women affected remains unknown.

The country does not have a national endometriosis registry, meaning health authorities cannot accurately determine the scale of the disease or track how many women are seeking care.

This absence of data creates a major accountability gap.

Without reliable figures, the condition remains difficult to prioritise in health planning, budgeting and resource allocation.

For women like Rehema, that gap is not just a statistic.

It is lived experience.

It means years of searching for answers.

Years of paying for consultations.

Years of managing symptoms without access to affordable specialised care.

And for some women, years of being told their suffering is simply part of being a woman.

Helen Kabahukia knows that experience.

She has advanced-stage endometriosis and adenomyosis, but she only discovered the cause of her suffering in 2024.

“From the very first time I had my period, I experienced excruciating pain,” Helen says.

For years, she was told the pain was normal.

“They told me it is a rite of passage. Every girl goes through it.”

But Helen’s experience was far from normal.

While other girls continued with their daily activities, she struggled to walk, stand or even remain conscious.

“Sometimes I would pass out because of pain. Sometimes I would fail to walk properly.”

Instead of investigations, she was often blamed.

“I was told I was being dramatic. That I was overly sensitive to pain and that I was not strong enough.”

Without a diagnosis, Helen spent years treating symptoms rather than the disease.

She moved from ordinary painkillers to stronger medication, injections and hospital drips.

“I graduated from painkillers to drips and injections. I would walk into hospital and tell them what I was struggling with.”

Eventually, the costs became overwhelming.

Her first investigations and medication cost hundreds of thousands of shillings.

The surgery that finally confirmed and treated her condition cost approximately Shs11 million.

Today, she spends about Shs500,000 every month on medication.

The challenge is that most insurance schemes do not cover the full cost of endometriosis treatment.

“You can get covering for consultations, but when it comes to medication, treatment and surgeries, they are not covered.”

Her experience raises a bigger question:

Why are women with endometriosis paying such a high price for a disease that affects millions globally?

Dr. Ndozile Katali Jr., an obstetrician and gynaecologist and fertility specialist at FemCare Fertility Centre, says part of the problem is that diagnosing and treating endometriosis requires specialised skills that remain limited in Uganda.

“An ultrasound scan for endometriosis costs around Shs100,000 to Shs150,000 depending on why it is done.”

But diagnosis is not always straightforward.

“To confirm that it is true endometriosis, we have to do a biopsy. The person doing it must be very skilled and must know what to look for.”

Treatment becomes even more complicated when surgery is required.

“These surgeries tend to be very expensive because there are few people who are able to do these surgeries in our country and even in the region.”

According to Dr. Katali, Uganda has specialists who have received advanced training abroad, including in countries such as India and Kenya.

However, many work in private facilities.

“Most government hospitals don’t have those facilities. That is why the cost is still high.”

This creates a system where access to quality care depends heavily on a woman’s ability to pay.

The World Health Organization’s Health Financing Progress Matrix for Uganda highlights that many Ugandans continue to face financial hardship when accessing healthcare because of high out-of-pocket spending.

For chronic conditions like endometriosis, where treatment may involve repeated consultations, scans, medication and surgery, families can quickly fall into financial difficulty.

Dr. Katali believes endometriosis has not yet received the attention it deserves from policymakers.

“Government has not seen this as a problem yet.”

He explains that Uganda’s health system continues to focus heavily on urgent challenges such as maternal mortality and infectious diseases.

“But endometriosis might not be one of their biggest things to tackle at the moment.”

For women living with the disease, however, it is already a major crisis.

The lack of national data.

The shortage of specialists.

The high cost of private treatment.

The absence of insurance coverage.

Together, these gaps have created a system where many women suffer quietly until they can no longer cope.

For Rehema, endometriosis has taken away more than money.

It has affected her career.

Her relationships.

Her confidence.

Her future plans.

She does not want sympathy.

She wants a system that listens.

A system where young girls experiencing severe menstrual pain are investigated instead of dismissed.

A system where diagnosis does not depend on personal wealth.

A system where treatment is available before years of suffering turn into permanent damage.

Because the real cost of endometriosis is not only measured in shillings.

It is measured in lost opportunities, broken dreams and women forced to endure pain in silence.