13 years of pain, baby lost, and a mother's fight to save others from fibroids

Jemimah Nzisa remembers the day she had her first major loss. It happened inside a maternity ward on a day she had hoped would finally bring her the cry of the child she had carried for 35 weeks.

Her pregnancy had been anything but smooth. She was constantly on painkillers and made frequent visits to the hospital. On the day she gave birth, she had gone in for a routine check-up, expecting just a scan before heading back home. But during the scan, the clinician noticed an anomaly and even called two colleagues to confirm her suspicions. The two colleagues said nothing, and Jemimah was left with many unanswered questions.

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She was handed her results and told to wait for the doctor, who would advise on the next steps. After reviewing the scans, the gynaecologist delivered the news: she needed an emergency caesarean section because the scans showed she had no amniotic fluid.

"It was on a Friday," Jemimah tells the Nation. "She told me the baby could wait any longer. The gynaecologist put me on medication that could help my baby's lungs mature and slotted me for a surgery on Monday."

Throughout the weekend, her baby seemed fine. She kicked. She moved as usual. Jemimah was not worried that anything would go wrong.

She returned to the hospital on Monday. Her surgery took place the next day; November 13, 2018. Though the procedure itself was successful, her baby died just 20 minutes after birth.

"No one told me about that," she recalls. "I kept wondering why I was not given the baby to see her, and why no one was coming to see me. One of my friends came in and mentioned that my baby was okay."

Later that day, the doctor broke the news. "I screamed in pain. I almost tore up my stitches. I felt heartbroken. I mourned the baby that I would never get a chance to raise," she says.

Throughout her pregnancy, she had spoken to her child, telling her how eager she was to meet her. She says she knew her baby was fighting for survival in her womb, and that the culprit that stole the beauty of life from her was fibroids.

It had been two years since she finally got a name for the constant pain that had disrupted her life. She had waited 13 years to receive that diagnosis.

"I started my periods in Class Seven, and I was only 13. It was so painful and I didn't understand what was going on. Everyone in school knew when my periods started. I used to miss school every month because I had heavy flow and would mess up my school uniform," she says.

"At the time, speaking about periods was like a taboo. I was so traumatised. I remember passing out every other time because I had low iron. It affected my studies and I had to repeat a class because of that," she adds.

Jemimah's parents tried to find a solution for her, but to no avail. She struggled throughout her teenage years and into adulthood whenever she menstruated. When she finished school and got a job, the pain persisted; though her bosses were gracious enough to give her time off duty.

One of her senior female colleagues grew concerned about her health. Jemimah confided in her, and the colleague advised her to get a scan to rule out or confirm any major underlying issues. That was when, in 2016, she was finally diagnosed with fibroids.

She says it was a relief to finally put a name to a condition she did not even know existed.

After her diagnosis, she underwent surgery to remove the fibroids. The procedure was successful, and she went on with her life, eventually getting married. 
Two years after the surgery, that is when she became pregnant.

"My child was a healthy baby. I saw her at the morgue and she was sleeping peacefully, just slightly deformed," she tells the Nation.

She shares that when she lost her first child, her husband blamed her for the death. "I am not sure if it was his way of mourning, but we were all mourning. We never talked about our dead child. Healing was not easy," she says.

She later learnt that fibroids can recur after removal surgery, and that is what affected her pregnancy.

But Jemimah did not give up on herself. After childbirth, she visited a different gynaecologist, who performed a scan and confirmed that she still had fibroids, only this time, they were smaller than before. The doctor advised against a second surgery immediately and instead prescribed supplements, which she has been taking since. They were meant to help balance her hormones and also shrink the fibroids.

"He told me that some supplements are good, and that they can help in inhibiting growth of the fibroids," she says.
Jemimah went back home and continued doing her own research online. She was inspired to learn more about the condition so she could share credible information with others.

She still experienced pain, but life had to go on. She continued visiting the hospital for check-ups, and after some time, she was told that her fibroids were shrinking. Jemimah also changed the type of sanitary pads she was using, switching to organic towels.

"I was desperate and I just wanted the pain to go away," she says.

A month after using the supplements, she did not experience the pain she used to have before. "It was my first peaceful period ever," says Jemimah.

Five months later, she became pregnant with her second child, who is now her only child. That was exactly two years after losing her first baby.

Jemimah says she was scared. She did not know if she was in a better position to carry her child to full term. When she went for a scan after discovering she was pregnant, she noticed that her fibroids had shrunk by half.

"It was a peaceful pregnancy, and there was no day that I was bedridden. I delivered at 38 weeks," she says.

During her research, Jemimah realised that many women may not know about the condition. She now encourages women to have routine gynaecological check-ups and pelvic ultrasounds, especially those who experience heavy bleeding, severe pain, infertility, or recurrent pregnancy loss.

Also read: Only 30 cases globally: Kisumu mother defies rare abdominal pregnancy to deliver healthy baby

Through her sharing on social media, she has also realised that many women cannot afford scans, so they end up suffering in silence. She is calling on the government to recognise fibroids as a major health issue and to support women and grassroots initiatives that are trying to create awareness.

"Kenya needs more locally funded research on fibroids to better understand their prevalence, risk factors, treatment outcomes, and the social and economic impact on Kenyan women rather than relying mainly on international data," she says.

Dr Richard Mogeni, a consultant obstetrician and gynaecologist at Moi Teaching and Referral Hospital, explains that the exact cause of fibroids is still not fully understood. However, he notes that fibroids develop from a single muscle cell in the uterus that grows abnormally.

He explains that their growth is influenced by hormones, especially oestrogen and progesterone, as well as genetic and environmental factors.

Fibroids are classified by their location. Intramural fibroids grow within the muscle of the uterus and are the most common type. Submucosal fibroids bulge into the uterine cavity, subserosal fibroids grow on the outer surface of the uterus, and pedunculated fibroids are attached to the uterus by a stalk.

Dr Mogeni says that most women with fibroids have normal pregnancies. However, depending on their size and location, fibroids may increase the risk of miscarriage, preterm birth, abnormal baby positioning, restricted space for the baby to grow, placental problems, obstructed labour, and a higher likelihood of caesarean delivery. Large fibroids can also increase the risk of heavy bleeding after birth.

"Many women have no symptoms at all. When symptoms occur, they commonly include heavy or prolonged menstrual bleeding, painful periods, pelvic pressure or pain, frequent urination, constipation, pain during intercourse, difficulty conceiving or recurrent pregnancy loss in some cases, and fatigue due to anaemia from heavy bleeding," he explains.

He advises that women should not assume heavy bleeding or painful periods are "normal" and delay seeking care. He notes that other types of fibroids may cause no symptoms until they become large.

"Even when they seek care, symptoms can mimic other gynaecological conditions. In some settings, limited access to ultrasound or specialist services also delays diagnosis," he says.

Treatment for fibroids, he explains, depends on the woman's symptoms, age, fertility wishes, and the size and location of the fibroids. "Options range from observation for small, symptom-free fibroids; medications to control symptoms; minimally invasive procedures for selected patients; myomectomy to preserve fertility; and hysterectomy as the definitive treatment for women who have completed childbearing," says Dr Mogeni.

He, however, cautions that there is no scientific evidence that supplements or special diets can shrink fibroids. A balanced diet, regular exercise, and maintaining a healthy weight, he notes, support overall reproductive health.

"There's a growing trend of herbal products marketed as 'fibroid cures.' Women should be warned that most lack evidence, and some may be harmful or interfere with medical treatment," he says.

Even though the condition affects many women, there is minimal data on it even from global health regulators like the World Health Organization.

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