Lupita's battle with fibroids: What every woman should know

On March 2, 2014, many Kenyans watched on TV as Lupita Nyong’o, a daughter of the soil, picked her Oscars trophy. Lupita won Best Supporting Actress for her role in the biographical historical drama, 12 Years a Slave.

That same year she was diagnosed with fibroids: non-cancerous growths that develop in or around the womb.

Last week, Lupita shared her experience being diagnosed with fibroids with all and sundry on her official Facebook page.

She wrote: “When we reach puberty we are taught that periods mean pain, and that pain is simply part of being a woman. I started talking about my experience privately and I realized so many women are going through this. We are struggling alone with something that affects most of us. No more suffering in silence!”

With a following (on Facebook) of 3.7 million, Lupita’s voice gives heft to an illness that confines many women to lonely battles.

Last April, we spoke to Dr Lilian Wairimu*, a medical doctor in Nairobi, who, “due to my job,” did not want to be identified in light of her struggle with fibroids.

Wairimu was in medical school when she started experiencing heavy menstrual bleeding accompanied with lots of pain.

“One time, in third year, I experienced so much pelvic pain that I had to leave mid-lesson to the students’ clinic. The doctor sent me for a pelvic ultrasound scan. That is how I was diagnosed with fibroids,” she says.

The fibroids, her doctor told her, were still small and there was no need to tamper with them at that time. In other words, there was no need to remove them surgically.

Before fibroids, Wairimu’s periods lasted 3-4 days. “I changed a maximum of three pads per day.”

After the diagnosis, and as the fibroids developed, her periods got heavier and longer. “Sometimes I would change pads eight times in a day; and bled for as long as seven days.”

In 2024, the bleeding had worsened. One morning, while in the bathroom, Wairimu fainted.

“If it was not for my younger brother, who came to my rescue, I am not sure how things would have turned out,” she says. The irony is that, as a medical doctor, Wairimu knew what to do, where to go, and how to proceed post diagnosis.

“I did not want to undergo myomectomy (surgery to remove fibroids). I wanted to be a mother in future. Myomectomy would mean that I would have to give birth via a caesarean section (CS). I wanted to give birth normally to have an easier time recovering after child birth,” she told this journalist.

Growing up, Catherine Muya,38, had heard of fibroids.

She says: “You hear talk about it from your aunties or your mother. But it’s just a word: ‘Fibroids’. It’s not something that someone sits you down to explain in detail.

“Even in (high school) biology, when teachers are addressing the reproductive system, ‘fibroids’ is just a word that’s put there. It’s never explained.”

In 2017, after an ultrasound scan, a doctor gave Catherine the news: ‘You have fibroids; they are big.’

“My first reaction was, ‘What are fibroids? How do they come about? How do you get them removed?”

For the first time she was getting to understand, in detail, what fibroids are.

Dr Jane-Rose Ambuchi is an obstetrician and gynaecologist working for Busia County government. She has performed many surgeries to rid women of problematic fibroids.

She says: “Fibroids can either be symptomatic or asymptomatic. Those that are symptomatic, of course, are the ones that cause problems and therefore need a doctor’s attention.

“But also, clinically, there are four types of fibroids: intramural, submucosal, subserosal, and pedunculated. The uterus has three layers. Intramural develop within the muscular wall of the uterus.

“Submucosal grow from just beneath the uterine lining and can bulge (then hang out) into the uterine cavity. Subserosal grow on the outer layer and can project into the pelvic cavity.

“Pedunculated are attached to the uterus by a stalk or a stem. They have developed into an ‘independent organ’. They could be of subserosal or submucosal origin.”

Dr Ambuchi says all fibroids can be dangerous to the woman’s wellbeing. However, submucosal fibroids tend to cause the most problems.

“Often they are the ones that cause the most bleeding. They will cause anaemia. They are the type that makes a woman bleed like a tap during her periods. If not addressed immediately they could be fatal.

“They are also the ones that are largely responsible for miscarriages: they are inside the uterus where the pregnancy should grow,” she says.

Lupita states in her post that she had 30 fibroids. All of them were removed through surgery.

‘I asked my doctor if I could do anything to prevent them from recurring. She said: “You can’t. It’s only a matter of time before they grow again.”’

Catherine knows too well the story of recurrence. In 2023, she had to undergo a second surgery to remove, “bigger fibroids.”

‘In partnership with the Foundation for Women’s Health, I’m launching the FWH x Lupita Nyong’o Uterine Fibroid Research Grant,’ Lupita wrote on her page; pivoting to the key messages she wanted to pass to her followers.

The research grant will see the Foundation for Women’s Health scout for research proposals geared towards developing minimally invasive or non-invasive treatments for fibroids, according to Lupita.

She explained: ‘We need to stop treating this massive issue like a series of unfortunate coincidences. We must reject the normalization of female pain.’

Other than heavy and painful periods fibroids could present with other symptoms as well.

Dr Kireki Omanwa is the president of Kenya Obstetrical and Gynaecological Society (KOGS). He says: “Fibroids also cause pressure problems on the bladder as well as the colon.

“Fibroids can press against these key organs and leave the woman feeling (frequently) pressed to head to the toilet, yet, when they do relieve themselves, what comes out is not commensurate to the pressure they were feeling.

“In some cases, fibroids will affect the woman’s sex life. Intercourse will feel uncomfortable or painful; therefore, not as enjoyable as it should be,” he says.

It is not clear how many Kenyan women have fibroids. However, based on research and survey, Dr Omanwa says, up to 80 per cent of women of African origin will develop fibroids at one point during their reproductive years.

“We do not know why Africans are diagnosed with fibroids more than Caucasians. There are theories that Africans are more genetically predisposed. But we also know that many women who get diagnosed can trace familial links; their immediate female relatives had it too.”

Can you trust Kenyan healthcare system to address fibroids?

“There are several treatment options available in Kenya,” says Dr Ambuchi. Typically, a patient will be advised on what treatment to take up depending on their symptoms as well as future pregnancy ambitions.

“There are injectable medicine to reduce the effects and symptoms such as bleeding and pain. Injectables may include hormone therapies.

“Then we have surgery to open up the abdomen and surgically remove the fibroids. We call it myomectomy,” says Ambuchi.

Dr Omanwa adds: “There are several types of surgeries that can be done. The first is laparotomy – the opening of the abdomen that ends with myomectomy.

“Then there is laparoscopic surgery: done by surgeons who are trained in laparoscopic surgery. The results are similar to what is achieved in laparotomy; the only key difference is that in laparoscopy, surgery is done through a small hole using laparoscopic tools.

“The last type of surgery – termed as hysteroscopic myomectomy – involves removing the fibroids through the vaginal opening.”

A less invasive surgical option known as uterine artery embolization (UAE) is also available in several level 5 and 6 hospitals in Kenya.

“It involves the tracing back of the artery supplying the womb with blood using a catheter and cutting off the blood supply. This denies the fibroids the nutrients to grow. This option is however usually not done on women who want to become pregnant later,” he says.

This year the first non-invasive procedure known as Hifu –High-Intensity Focused Ultrasound – came into Kenya.

“Hifu uses high intensity waves which are converted into heat that is used to burn and damage the fibroids,” Omanwa says.

Women who have problematic fibroids and have already achieved their desired number of children can take up the option of undergoing a hysterectomy: the complete removal of the uterus.

Lupita hopes to see more awareness; especially towards young women. She writes: ‘I envision a future with early education for teenagers, better screening protocols, robust prevention of research, and less invasive treatments for uterine fibroids.’

Catherine, who only got to understand fibroids after turning 30, is in agreement with Lupita’s sentiments.

She says: “It should be a priority especially for young ladies. Girls in their 20 should be having regular check-ups to address them early.

“It would also be great if leaders made sure the conversation on fibroids takes place all the time so that there is less stigma to it: fibroids kind of feels a bit shameful for many women.

“The government should also make sure that all women can be screened early enough and detection is done early. For those who need surgery, it should be affordable at the very least and free for those who cannot afford the cost.”