The Pain No One Believed: Esther’s Long Fight to Be Heard

Imagine deciding what you wanted to be in life only to be crippled by chronic pain. At 28, Esther has lived with debilitating pain since she was 14. Pain that disrupted her education, interrupted her religious vocation, and left her feeling misunderstood by the very people she hoped would help. Now diagnosed with deep infiltrating endometriosis and adenomyosis, she is seeking the treatment she needs and calling on others to stop dismissing women’s pain.

When Esther Twili was 14, she began experiencing debilitating menstrual pain that would change the course of her life.

Her first period had come without pain. But the following month everything changed. The pain became so severe that she collapsed at her boarding school.

“The pain was insane,” Esther told The Weight She Carries. “To an extent that I could not bear the pain and I just collapsed.”

Her friends alerted the teachers, hoping they would recognize the seriousness of what was happening. Instead, they dismissed the incident as an attempt to avoid class.

“They just saw me as a girl who was pretending and needed extra care,” she said.

Esther struggled to understand why her body was behaving this way, and when the episodes continued, she began bracing herself for the next one. She would buy painkillers and hide them.

“I started preparing myself psychologically. I could buy painkillers and hide them,” she said.

Eventually, she told her parents. But instead of seeking answers, she encountered a familiar explanation: menstrual pain was simply part of being a woman.

“You will experience pain. You have to bear it,” they said.

After her first collapse at boarding school, Esther decided to transfer to a day school so she could be at home when the pain became unbearable.

A Barrier to Education

The change did not resolve the problem. During her periods, she was often unable to attend school at all. If the pain began while she was at school, she would frequently collapse, forcing her parents to come and take her home.

Sometimes, she was taken to a dispensary, given an injection for the pain, and sent home.

The pattern continued through high school and into college, where the consequences became even more serious.

Her college had strict attendance requirements. Missing classes meant having to repeat the entire course and pay the fees again. Because of her pain, Esther missed several classes and struggled to keep up with her studies.

“At times I would wake up and feel my body shutting down completely. I couldn’t do anything. Not even get out of bed,” she said.

Eventually, Esther had to leave without completing her course or sitting for her final examinations.

The pain had taken more than her ability to attend class. It had interrupted an important step towards building her future. Despite this, Esther held on to another aspiration: a desire to serve God as a nun.

A Vocation Challenged by Illness

In 2017, Esther began searching for a religious congregation and eventually joined one. She hoped to pursue the life of service she believed God had placed on her heart.

But the same pain that had disrupted her education followed her into religious service.

The sisters in her first congregation struggled to understand her symptoms. When Esther explained that her periods caused her to faint and become too unwell to work, they accused her of pretending, seeking attention, or avoiding responsibilities, she said.

She eventually left and returned home before trying another congregation. There, her symptoms worsened. Alongside the severe menstrual pain, she began experiencing migraines so intense that she could not tolerate bright light or go outside in broad daylight.

When she asked for painkillers, she was sometimes told that she had become too accustomed to them and had not been brought up properly.

On one occasion, Esther was so unwell that she could barely walk. She sent a friend to ask a sister for painkillers. Instead of receiving the help she needed, she was insulted and told that religious service was not for people who were frequently ill. If she was not prepared to serve God, she should pack her bags and leave, she was told.

“I cried, but I took the painkillers because I was in so much pain,” Esther said.

Even after receiving them, Esther faced pressure to get out of bed and resume her duties. Then she was questioned the following day about whether she was still in pain or simply wanted to remain in bed.

Esther forced herself to work despite her symptoms.

The experience left her feeling deeply hurt. She had entered the congregation hoping to serve God, yet her illness had become a source of conflict and misunderstanding.

On another occasion, she attended Mass despite feeling unwell and collapsed during the service. A priest arranged for her to receive an injection for the pain. But when she returned to the community, she says the sisters reprimanded her for embarrassing them.

“I told you I was not feeling well. How did I embarrass you?” she asked.

Her body had given out, but no one seemed bothered enough to care.

Some spiritual leaders suggested that her illness might be a sign that religious life was not the right path for her.

Eventually, Esther left the congregation and returned home. The cycle of pain continued, and so did the uncertainty about its cause.

“I started seeing myself as a failure, like I’m not normal.”

She watched other women she had trained alongside complete their formation and take their vows, while her health continued to prevent her from moving forward.

“I started feeling like God truly does not want me on this path of life. It’s all in my head.”

Searching for Answers

By 2019, Esther had reached a point where she knew she could not continue living this way without seeking a solution. She began visiting different doctors and hospitals, hoping someone would identify the cause of her symptoms.

Several doctors told her that giving birth would resolve the pain. Esther questioned this advice, particularly because she was pursuing religious life and did not intend to have children.

“What if I’ve chosen a different path of life and don’t want to give birth?”

She saw four different gynaecologists but didn’t receive anything concrete.  Eventually, she became discouraged and decided to manage the pain with medication and carry on as best she could.

These episodes affected different parts of her body. Sometimes the pain was in her head; at other times, her legs, back, stomach, or pelvis. She also experienced bloating, vomiting, and painful bowel movements — symptoms she found difficult to discuss openly.

Then her bowel symptoms became more alarming. She began passing blood and, at times, what she described as pus.

A colonoscopy was recommended. The results indicated colitis, and she received treatment, but her symptoms persisted.

Still, the cause of her broader pain remained unknown.

Little Family Comfort

Some relatives suggested that her symptoms were linked to traditional or spiritual causes. Others speculated that she was experiencing a curse or the consequences of her ancestors’ actions.

The repeated dismissal took a toll. Even when she was unable to walk or stand because of pain, she says family members sometimes left her alone rather than recognizing how much help she needed.

“They’d just go and leave me. If you want to die, die,” she said.

Her family had grown tired of hearing about her pain, especially because medical examinations had repeatedly failed to identify a clear explanation.

Her body continued to send unmistakable signals that something was wrong. The uncertainty made planning everyday life difficult. She could wake up feeling relatively well and then become incapacitated an hour later.

“Endometriosis pain is something that is so unpredictable. In the morning you can wake up feeling very energetic, feeling okay, and then after one hour, I’ll start having serious pain. Then crazy mood swings.”

Finally, A Diagnosis

After years of searching for answers, Esther confided in a friend who knew someone living with endometriosis. That connection led Esther to a gynaecologist who recommended a transvaginal scan.

The results finally provided an explanation. She was diagnosed with deep infiltrating endometriosis and adenomyosis.

Her doctors have proposed laparoscopic surgery to remove visible endometriosis and treat some lesions during the procedure, depending on what is found. Then she will continue hormonal medication afterwards to help reduce the risk of recurrence.

Receiving a diagnosis was an important step towards understanding what she had been experiencing. But the diagnosis alone has not resolved the challenges she faces.

Esther continues to encounter scepticism from some family members, particularly regarding a proposed surgery. Some have questioned why she wants surgery and what she expects to happen afterwards. Others have raised concerns about where the money will come from.

“I am the bearer of the shoe. I know where it stings the most, where it hurts the most,” she said. “Even if at times you see me in pain, you cannot understand the kind of pain I go through. I go through this pain alone. I go through these battles alone.”

Esther is now seeking the financial support needed to proceed with treatment.

The Financial Barrier to Treatment

 Esther’s medical coverage is expected to contribute KSh 139,400 ($1,075 USD) towards the cost of her care. However, she says she still needs to raise KSh 460,000 ($3,550 USD)out of pocket for the surgery.

For someone whose condition has made it difficult to work or pursue further studies, raising that amount is a significant challenge.

“I feel living with this pain has robbed me of everything,” she said. “I cannot work. I cannot do studies. I cannot do anything for myself.”

At 28, Esther grieves the years she has lost. She wants the opportunity to pursue her goals, take care of herself, and live without the constant fear of another debilitating episode.

“I don’t want to live like this forever. I need to find a solution and live a normal life like others.”

Her appeal is not simply for financial assistance. It is also an appeal to be heard and believed.

Those who would like to assist can contact Esther directly on WhatsApp at +254 797 660 098, or contact The Weight She Carries at info@theweightshecarries.com for assistance in getting in touch.