Lucia Ayiela Has Lived With Excruciating Pain For 15 Years Because Of Fibroids. She Turned To Twitter To Seek Assistance Then Everything Changed

When Lucia Ayiela had her first painful period at 16, she had no idea it would lead to a lifetime of pain management. At the time, doctors simply diagnosed her with dysmenorrhea—painful cramps caused by uterine contraction. This isn’t normal and can usually recede with painkillers. However, extreme period pain can be a sign of endometriosis, among other medical complications. For Ayiela, she was examined for appendicitis, hormonal flux. Pelvic scans revealed nothing. But she still had to live with the pain. Until just three years ago, she finally got a diagnosis of fibroids. It was merely putting a name to the chronic pain she may have to live with for the rest of her life.

At 31, Ayiela, now a digital activist, turned to Twitter in April 2023 to seek assistance for fibroids treatment. Fibroids are a condition where non-cancerous growths develop in and around the uterus. Due to the pressure the tumours apply to the other pelvic organs, fibroids cause pain. Ayiela felt pain when lying down, sitting up, walking, or exercising. It made everything painful or uncomfortable, including sex. The painkillers she was constantly prescribed made her develop acid reflux, which made eating difficult. It was time for a more permanent solution. But fibroids treatment isn’t that straightforward.

Kenyans suggested using NHIF coverage, but Ayiela explained how she couldn’t afford the monthly Ksh. 500 fees because she doesn’t have formal employment. The little money that she makes goes towards putting food on the table and basic survival. She constantly chooses between paying debts and bills, or getting food, a situation common with many young Kenyans. When she was working in 2019, she went to government hospitals the wait times were unbearable. With immense pain, she couldn’t manage to wait. Currently, while unemployed, she can’t afford to pay for NHIF sustainably.

Meet Lucia Ayiela

Ayiela is the founder and executive director of a non-profit, The Umma Action. It is an organisation that trains people on social media advocacy. It helps catalyse civic engagement among younger users who are politically active. They also break down complex socio-political topics such as the constitution, social justice, governance, public accountability, and, lately, reproductive health rights.

Her experience online found that there is a severe lack of awareness when it comes to women’s reproductive health. She also observed that most NGOs and government outreach programs target menstruation and contraceptive activation. The advocacy focuses on period health and age of consent—all valid, but there’s a noticeable gap regarding the other reproductive health problems that women face, especially when these problems have no direct relation to pregnancy. Ayiela was also surprised to find out that at least eight out of every ten women face reproductive health challenges. So why aren’t more people aware of it?

The diagnosis

Ayiela’s problems began when she was 16. She suffered painful menstrual cramps. She got a pelvic scan on her first medical visit, where they checked for appendicitis. Ayiela was ruled fit but had dysmenorrhea. After a while, she experienced pain during ovulation. The second scan in 2012 said she had a hormonal imbalance. She was given a course of painkillers which came with a side effect of hyperacidity. The doctors suggested contraceptives, which are frequently used to treat menstrual conditions, but she didn’t want to risk the side effects, some of which include depression, breast tenderness, headaches, nausea, and blood pressure, and they can lower the chances of successful IVF implantation.

In 2020, she finally got the diagnosis of fibroids after a very invasive exam. She had been exhibiting fever, nausea, pain, and blotting symptoms. The medical examiners found eight growths, the largest being four centimetres in diameter. She realized this was possible after so long because of technological and medical advances and more affordable scanning mechanisms. The treatment given at the time was painkillers to help manage the pain.

Ayiela’s tweet was a source of comfort after she realized that wasn’t the only one in such pain. Sadly, many women endure so much agony, but it was still a balm. She had previously worried that she would die of pain or never have children, something she dearly wants. But one woman replied that she received extensive treatment for fibroids and eventually got pregnant successfully.

After the tweet and a further interview with Nation Media, Ayiela got pro bono treatment at Aga Khan University Hospital. The doctors had told her options included surgery and non-invasive treatments like injections, medications, or uterine artery embolization cuts off blood supply to the fibroids and shrinks the fibroid tumours. However, these carry the risks of the fibroids growing back. To increase the success rate of the treatments, she would need to add herbal remedies to her diet and make dietary changes, such as reducing red meat and exercising.

After meeting with doctors, the best option for her treatment is a uterine myomectomy due to the size of her tumours. This surgery targets the fibroids while preserving the uterus. For women who have fibroids and want to have children in the future, this is the best treatment option. It’s one of the better options for patients who still want to have children. However, there is still a risk of re-growth. The hospital is conducting this under its Patient Welfare Programme, a service that provides urgent care for people who need treatment but cannot afford the accompanying costs.

More research is needed to determine the efficacy of herbal remedies. Green tea contains flavonoids like Epigallocatechin gallate, a catechin that helps reduce inflammation in the body. As a result, some believe it can help reduce the size of fibroids.

Misinformation about fibroids and what causes the condition

But it wasn’t all optimism from the replies to her tweet. There was a lot of misinformation and misconceptions being bandied around. Some people told her that fibroids were caused by not having enough sex or not giving birth. One such unpleasant reply stated an idle womb is the fibroids’ workshop.

However, scientists have yet to confirm the real cause of fibroids fully. They have found correlating conditions that can increase the risk. Fluctuations of menstrual hormones like oestrogen and progesterone can trigger development. Having a genetic predisposition can also increase the chance. Women over thirty or overweight also have a higher chance of developing the condition. An increase in the extracellular matrix can change the composition of fibroids, making them more fibrous. Black women are also more predisposed to the condition. Pregnancy, which increases the levels of oestrogen and progesterone, can increase fibroids’ size and growth rate of fibroids, but it doesn’t increase the risk of developing new fibroid tumours. There is also a suspicion substandard feminine hygiene products can increase the likelihood. Ayiela didn’t have any relatives with fibroids.

How to make things better for women

One of the simplest ways that changes can be made in addressing such women’s issues is to stop the normalisation of pain. Ayiela experienced painful periods, painful ovulation, and painful sex. But it took doctors years to finally identify fibroids as the root cause of it. Women are taught to live with pain, perhaps because of a cultural norm of glorifying pain and suffering. Agonizing cramps aren’t normal. But getting treatment for them is most difficult.

When talking with an NHIF specialist, Ayiela found out they only cover instances of fibroids that are life-threatening and need surgery. And at that, NHIF only pays Ksh. 70,000 of the total fees. Full treatment of fibroids can cost up to Ksh. 150,000. With no job or health insurance, what can women do about getting such treatment? Women face unemployment, unequal job opportunities, wage gaps, and underemployment. Ayiela relies on freelance gigs to make ends meet.

Freelance gig work

The problem with the gig economy is stiff competition for online work. The income is never stable. Therefore, gig workers can’t apply for health insurance. Unlike formal employment, gig workers have to cover their business costs. They must pay for internet connection, purchase their devices, and sort their transport and other overheads. There is no safety net like a pension, and you can’t get retrenchment insurance considering the lack of job security. There are no legal frameworks to safeguard the labour rights of gig workers.

Managing a life around fibroids with such a precarious job situation is difficult. Ayiela has to plan everything around her period. It was often irregular or extended. Managing the pain around others can be uncomfortable because many apply their stigma toward menstruation. Dating life is also trying because a potential partner must always be told about the chronic pain, with some unwilling to date a partner needing extra care.

People should be more sensitized to the far-reaching effects of the condition. Sensitivity to vulnerable people is an acquired art that many don’t seem to have. Companies also rarely add conditions like fibroids among the disabilities they need to be inclusive. There is no period leave in Kenya, offered in some countries like Zambia, Japan, South Korea, and Spain.

Where the government is failing

Ayiela states that Article 43.1.a of the constitution affords Kenyans the highest attainable health standard, including the right to health care services, including reproductive health care. The national insurance provider shouldn’t limit their coverage to life-threatening emergencies. Ayiela also suggests that the Ministry of Health be domiciled in every hospital and provide obstetrics services. Most institutions don’t prioritize female reproductive health. Churches, libraries, and other public shared spaces should provide female sanitary products. People who mass stock sanitary products in emergencies can also be helpful.

Sharing her experience with this pain has helped Ayiela realise that the burden is halved. It helps her navigate her initial diagnosis. She felt damaged, broken, and not a complete woman. But the realisation that so many other women experience the same helped her come to terms with the condition and how it did not deny her womanhood or inhibit her choices to start a family. The mental health impact is undeniable. But having people know what you’re going through reduces anxiety. In Ayiela’s case, the prior isolation manifested as anxiety and depression. No longer feeling alone, surrounded by support, Ayiela was finally looking forward to fibroids treatment.

If I could have it any other way, I would.
Begging takes away one's dignity & I would like to keep mine. We are all fighting battles nobody knows of, let's be kind to each other.
The world needs a piece of your heart, not a piece of your mind.
Be kind. pic.twitter.com/5vvQGl2Kyx

— Ayiela Lucia (@ayielar) April 24, 2023