Endometriosis ruined my joy, health, and almost took my life

June Kathoki during the interview in Kariobangi, Nairobi, on March 22, 2025. [David Gichuru, Standard] On a fateful day in 2018, June Kathoki, then just 27, swallowed an entire container of pills and lay down to sleep, hoping she would wake in the celestial realm of the departed. Fate had other plans. June is a Health Records Officer at a local hospital Instead of slipping away, she awoke violently, her body convulsing as she expelled the very substances meant to end her life. "I woke up, vomiting my guts out," she recalls. It was her first suicide attempt. A desperate act born from an overwhelming sense of hopelessness. In the months leading up to that moment, life had become a relentless struggle, devoid of meaning. "My body - since adolescence - had been giving me pain. The same year I had been diagnosed with endometriosis - a disease that I was just coming to terms with and which, I was told, was incurable," she says. The shadows of despair returned in 2019, leading to yet another attempt. "Nothing in my life made sense. The pressure from all directions was suffocating. People constantly asked when I planned to have children, oblivious to the pain ravaging my body. No one seemed to care about my well-being," she recounts. In 2020, disagreements with her boyfriend grew, "possibly exacerbated by endometriosis," leading to the relationship ending abruptly. Friends, once her solace, withdrew, their patience tested by what they failed to understand. "I felt utterly alone. Like no one wanted to understand my pain." She plotted for the third and last suicide. This time, she sought out the strongest medications, determined that there would be no coming back. "My plan was to do it when my mother wasn't around." But fate intervened once more. Against her expectations, her mother didn't leave. "I couldn't go through with it knowing she was around. So, I postponed my plans to the following day." By sunrise, something shifted. The enormity of what she was about to do dawned on her. She confided in her mother, who wasted no time in admitting her to a mental health institution. June attributes much of her despair to societal pressure to become a mother-a desire she shared, yet one made nearly impossible by her condition. The chronic pain and relentless judgment left her feeling unworthy. It was only later that she discovered another cruel twist: some of the medications prescribed for endometriosis can severely impact mental stability. Primary school science Dr Hiba Tahjiud, an obstetrician and gynaecologist, explains endometriosis in the simplest of terms, starting with basic primary school menstrual health science. "The body is composed of different types of cells-each unique in function. The cells that make up the lungs differ from those in the liver or the skin. "Inside a woman's womb, the innermost lining consists of a specialised layer of cells known as the endometrium. Each month, in preparation for implantation of a fertilised egg, the endometrium thickens. If fertilisation does not occur, it sheds-manifesting as menstrual blood. It is a cyclical event that repeats itself every month in every female who has hit puberty, until menopause." In some women - estimated to be about 10 per cent of all women in the world -endometrium-like cells grow in other parts of the body outside the inner lining of the womb. These rogue cells can appear anywhere-in the skin, eyes, lungs, even the brain. This condition is called endometriosis. The endometrium grows and shrinks, stimulated by hormonal changes that follow a woman's menstrual cycle. Therefore, wherever they are in the body, they will grow and shed just as the actual endometrium does in the uterus in the menstrual cycle menstruation. But unlike the uterine lining, they have nowhere to exit. This leads to internal inflammation, causing severe pain as tissues stick together. explains. "When the endometrium 'bleeds' the endometriosis also bleeds wherever they are. This causes irritation and inflammation in those places. The irritation causes the tissues to stick together. This comes with a great deal of pain to the person with endometriosis," says Dr Tahjiud. Nelius Mukami has undergone surgery to remove endometriosis and adenomyosis. [Courtesy] Nelius Mukami does not know a period without pain. "I have had painful menses since Class Seven. In high school, all my teachers knew that once every month I could not even be in class. The pain was unbearable," she says. But no one seemed to have an explanation of the pain. Nelius believed it was normal period pain and everyone seemed to tell her as much. 'It will go away when you give birth,' she was told. But why was she in debilitating pain compared to her peers? That remained a conundrum that would be solved in 2015 when she was looking to conceive. "I had been trying for a baby but it was not happening. Tests at the hospital showed that my tubes (fallopian tubes) were blocked. "Because medical imaging could not show what was blocking the tubes my doctor advised surgery: an investigative laparoscopic procedure. "The surgery was supposed to last a couple of hours but it extended on for six hours. This was because when the doctors went in they found that I had Stage Four endometriosis. And thus, my struggle with painful periods. "The disease had affected my ovaries. It had spread in my intestines and rectum. And so the doctor had to resect and remove some of it - that's why it ended up taking far much longer." Menstruation comes with some level of discomfort, says Dr Tahjiud. However, the discomfort should not be painful - let alone debilitating pain. Stage four endometriosis, she adds, is the most severe and extensive form of the disease. How come then not many girls, teachers and parents know this? June, too, recalls suffering painful periods as soon as she hit adolescence. "I was fainting, vomiting, and blacking out. I could not walk. Sometimes the pain made it hard to have a coherent conversation," she says. She recalls one time she underwent a colonoscopy as medics thought her symptoms to be from digestive problems. A costly battle On November 6, last year, Nelius was wheeled into surgery - the third surgery of the kind - to remove some endometriosis, "and adenomyosis." On her Facebook page she wrote, 'They say third time's a charm.... This pain has brought its own battles: severe dysmenorrhea, depression, infertility, and years of relying on painkillers just to get by.... please keep me in your prayers as I head into this surgery.' Dr Tahjiud says there is no permanent solution for endometriosis. "We can only manage it. We start with some pain killers to reduce the pain. "The second level of management is to stop estrogen; the hormone that stimulates the endometriosis to grow. This, sometimes, means making the lady menopausal. "For younger women and girls, it is not a treatment option that can be sustained for long as menopause also comes with its challenges. "Then we have a hormone called progesterone. This is the opposite of estrogen. It is the hormone that is in abundance during pregnancy. "Therapy with progesterone would place the woman's body is a state of perpetual pregnancy and stop the growth of the endometriosis or shrink it out altogether," says Dr Tahjiud. A surgery to remove endometriosis costs between Sh350,000 and Sh1.5 million. Nelius says she spends Sh10,000 per month on hormonal suppressors and painkillers. One interesting thing is that these hormonal therapies sometimes can cause mood swings, anxiety and depression, notes Dr Tahjiud. At the time of her battle with mental health, June had already begun taking medication against endometriosis. She has also undergone two surgeries - in 2018 and 2023 - to remove the endometriosis. "There is a possibility that the medicine for endometriosis had an effect towards my spiral into depression," she says. "At some point I was diagnosed with bipolar disorder as well." She was placed on daily medication for depressive disorders; medicine she is taking even today. A disease of theories Endometriosis remains a mysterious disease. Have you taken note of the uncanny resemblance it has to cancer? "It is not cancer though. Cancer cells are abnormal cells in the body. Endometriosis is normal cells found in the wrong part of the body," says Dr Tahjiud. Unlike cancer, endometriosis isn't typically fatal. But it does drastically reduce quality of life. "For endometriosis, the biggest problem is morbidity: reduction in the quality of life." That said, it can be deadly in extreme cases. Kenyan radio personality Njambi Koikai, known as Jahmby Koikai, succumbed to complications from thoracic endometriosis in June 2024 after a long battle with endometriosis. Jahmby suffered countless collapsed lungs due to thoracic endometriosis and at some point had to travel to the United States of America for specialized surgeries. "When endometriosis invades critical organs like the brain, lungs, liver, or stomach, it can be lethal," Dr Tahjiud warns. Still, no one knows, for sure, how endometriosis develops. In the medical arena it is referred to as a disease of theories. "That is because as at now, only theories have been developed to explain its possible origins. There is the retrograde menstruation theory (menstrual blood flowing backwards through the fallopian tube), the genetic predisposition theory (having a high chance of developing the disease if you have a first-degree relative with the condition), and another theory on malfunctioning of the immune system. More theories are still being explained," says Dr Tahjiud. There is no scientific proof to succinctly prove any of the theories. March is endometriosis awareness month. This year's theme is 'Endometriosis Explained'. To which Dr Tahjiud says: "For us - obstetricians and gynaecologists in Kenya; under the Kenya Obstetrical and Gynaecological Society (KOGS) - we have taken note and are out to inform everyone about this disease. Our hope is that every Kenyan, from a young girl in primary school to clinicians in hospitals, will have good understanding of what endometriosis entails." For women like June and Nelius, awareness is not just a campaign-it's a lifeline.

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