My Struggle With Endometriosis – ESTHER KIMEMIA

Esther Mbugua Kimemia, 27, an author, menstrual health advocate and founder of Yellow Endo Flower thought the painful periods she experienced while young were part of the normal monthly biological changes women go through. But the severe pain was caused by a disorder known as endometriosis. Esther chats with HENRY KAHARA on her decades-long struggle with the disorder.

As a little girl, Esther Kimemia looked forward to her menarche (the first occurrence of menstruation) as she had been told that was the day she would graduate from a young girl to a woman. According to Esther, she thus eagerly waited for the day. By the age of 12, her mother had already started preparing
her and she even started walking around with her period preparedness pack in her school bag.

So when she received her first period, she was excited. Little did she know that it was her induction to a journey that would change her life. “My period was red, innocent and irregular, nothing out of the norm for a teenage girl. The first few months after the menarche are usually peppered with irregularity as the body tries to figure out how to balance the surge of hormones,” she says. When Esther joined high school, the previously minimal discomfort became unbearingly painful. She tried to conceal it initially, but then it started disrupting her everyday life. She sought medical care from the school nurse. “The visits became the norm every time I had my period and the nurse routinely gave me paracetamol – a painkiller.

However, the regular monthly visits did not seem to raise any alarm. I had been told about the usual cramps that accompany periods, but what I was experiencing was not normal as it was extremely painful,” she points out. By the time she was joining university, the pain had increased and was now a cocktail of aches and discomfort. She was also dealing with more than just a painful period. “I had recurrent urinary tract and yeast infections yet I was not sexually active at the time. The pain was enough to make me limp. The left side of my abdomen would get so swollen and tender. It was also hotter than the rest of my body,” discloses Esther.

The pain during the whole cycle was intense, she could barely catch a breathe. After a few months, the doctor recommended her to visit a urologist to investigate the recurrent infections. Esther notes that she had her first investigative surgery in 2009 where she was diagnosed with chronic cystitis – a recurrent bladder infection. “I was put on medication but the pain didn’t budge. The doctor referred me to a gynecologist who saw me for a couple of months. Many ultrasounds later, he diagnosed me with endometriosis – a disorder in which tissue that normally lines the uterus grows outside the uterus.

I was then booked for my second surgery. The doctor went in and found endometriosis growths connecting my left ovary and large intestines. This explained the horrible constipation that I was
experiencing. I never thought that my cycle and bowel movements were related in any way,” narrates Esther. After the surgery, she was put on a hormonal treatment that stops periods and reduces oestrogen levels. “The side effects were horrendous. I got depressed and had menopausal symptoms. There was no lesser evil in this case, it was more of choosing your poison and dying slowly. When the drug wore off, my periods came back and so did the pain,” Esther recollects.

A few months later, she went back to the doctor and did an ultrasound where it was confirmed that she needed to go into theatre as the adhesions were back and her appendix had given way. “After the surgery, I caught a break for the rest of the year until I started developing cysts in my ovaries. As they grew, the pain would increase. They were so rampant that we had to do a cancer marker test,” she says.

Esther says that at the time, most people around her didn’t know what she was going through as she looked fine from the outside but she was slowly fading away in pain on the inside.“I once had a blood clot in my bladder that was excruciatingly painful, I remember peeing blood and crying tears,” says
Esther.

She adds that people kept telling her to have a baby for everything tobe okay. “But I personally felt at that time I needed my mother and not to be a mother,” she says adding the question of being a mother brought more insecurities and concerns to the forefront.

“What if I had difficulty conceiving a baby? What would happen then? After all, endometriosis is the third leading cause of infertility,” she poses, pointing out that those were some conversations that she needed to have with her potential spouse and she did. Esther got married in 2012 and the following year she was in and out of hospital seeking treatment for different kinds of cysts. In 2014, she was blessed with her first child and the second one came two years later.

It’s after she was blessed with her second child that she decided to change the narrative as more girls and women needed to know how crucial it is for them to understand their bodies and keep a period diary.

“A period is much more than an inconvenience. It is a monthly summary of what is going on within our bodies. The duration of flow and the colour of blood should be an indication of something bigger rather than an irritation,” she points out.

She thus founded Yellow Endo Flower, a non-governmental organisation meant to equip, empower and
encourage girls and women as they blossom and bloom. “Our aim is to demystify periods and discourage period shaming and to create awareness about endometriosis. We also support and encourage endo-warriors,” she offers.

Endometriosis affects one in 10 women. It is considered an invisible disease because you can’t see it, yet it is real. Many times women are told that the pain is all in their heads or that all women experience pain, but pain that disrupts ones life is not normal. Esther shares that there is no cure
for endometriosis. However, one can manage the symptoms. Diet and lifestyle changes can also help to reduce the pain, and inflammation levels.

“We need to talk about period cycles and keeping a period diary as passionately as we talk about availability of sanitary products. This way, more girls and women will know when to call out for help. My goal is to educate girls and women in every county in Kenya on period cycle and keeping a period
journal as this will help earlier diagnosis of menstrual disorders,” says Esther. To equip and empower girls to be able to flourish happily and in peace, Esther has written a book, Bloom, which is a practical guide for menstrual journey.

“I wrote Bloom to educate and equip other girls and women to understand their cycles and get in sync with their bodies,” reiterates Esther, adding that the book encourages girls and women to be present, take note of details, plot graphs to understand the bigger picture and learn to enjoy the various aspects of their cycle.

“Pain is the body’s way of crying out for help. Painful periods are not normal. You are your greatest advocate. Do not let anyone convince you that painful periods are normal. Take time to understand what a normal period is and then seek medical advice when you experience symptoms that deviate from
the list,” advises Esther. She concludes, “A rose doesn’t lose beauty because of it’s thorns. It blooms despite the thorns. The menstrual cycle should not hinder your life; if it does, seek medical advice.”