“Come back when you are ready to have a child” is a phrase N’zallah Zamani Haro and other women dealing with PCOS in Nigeria have heard from medical practitioners.
When she was 19 years old, N’zallah’s life took a turn when her period ceased for six months. A visit to Chika Hospital in Zaria, North West Nigeria, led to a series of tests, including blood work and transvaginal ultrasound, which led to her diagnosis of PCOS.
“The vaginal ultrasound was not painful but rather uncomfortable,” she remembers.
Polycystic Ovary Syndrome is described as “a gynaecological, endocrine disorder characterised by the presence of painless and benign cysts in the ovaries, common in women of reproductive age.” This condition is said to affect between 4 per cent to 20 per cent of women worldwide.
“When I first visited the hospital, they asked for my age, and when I told them I was 19, they asked if I wanted to start a family or if I was getting married soon. And this experience is common with other women I have spoken to, when we say no, they tell us to go and come back when we are ready to start a family so they can help us with fertility issues.”
The first doctor gave her combined oral contraceptives without equipping her with the information she needed about the life-threatening condition. He then told her to come back when she was ready to be a mother, she remembers. Most of what she learned about her condition was based on research she did herself.
According to research published by the British Journal of Public Practice, 83.15 per cent of women said they were not given enough information on the long-term effects of their condition by health professionals and even when information was given, it was focused more on fertility
In 2021, Nzallah had her first surgery in Abuja, the country’s federal capital territory, for cyst removal on her right side, which was blocking the blood supply to her ovaries, and a second one in 2023 when the pain persisted – the cyst in that one was harder to locate and was done on her left side.
“There is the mental but also financial impact of the surgeries. The first cost ₦400,000, and the second cost ₦1.2 million.”
Still, she understands that her experience is not the worst case scenario.
“I felt a little grateful about my experience when I heard about other people’s experiences. There was a woman I heard who had that same surgery four times.”
Brain Fog And Fatigue
N’zallah, who works in public health as a communications officer, struggles daily with issues such as brain fog and fatigue caused by the condition.
“In my old job, I suppressed my symptoms a lot. Now, I listen to my body more than ever. I abort mission at the slightest feeling of discomfort. I don’t play with my job, I am good at what I do and refuse to let PCOS win.”
But N’zallah’s hard work usually goes unnoticed due to issues caused by her condition, and people assume she may not be giving it her all as there is little awareness about how brain fog and fatigue impact people’s lives.
“People would tell me it’s just PCOS and shouldn’t really affect my life that much since there is a big misconception that PCOS is strictly a fertility issue,” she says.
Brain fog is a cognitive impairment that can lead to slow thinking, forgetfulness, mental haziness, confusion, and difficulty focusin due to insulin resistance. Sleep apnea, mood disorders, sugar spikes, medications, and abnormal hormone levels associated with PCOS are believed to lead to brain fog among women dealing with this condition.
“PCOS is a life-threatening condition because we are at risk of endometrial cancer, diabetes, and high blood pressure. It is a complex and multifaceted condition. There must be different approaches to solving PCOS, and everyone’s journey is different. A regiment that works for me may not work for someone else.”
A Lapse In Research
The 30-year-old strongly believes the misunderstanding of PCOS also extends to medical practitioners themselves making it harder for patients to navigate it.
“When I was in Zaria, a hospital staff once told me I was struggling with a rich people’s children’s disease when she learnt I had it. It takes a professional to really understand it.”
Lack of financial backing is said to be a leading factor in PCOS research. A study published by the Journal of Clinical Endocrinology & Metabolism shows that PCOS was given less funding than other conditions, such as rheumatoid arthritis, lupus and tuberculosis. According to Ricardo Azzizz, a chief officer of Academic Health and Hospital Affairs at the State University of New York, “Most of the studies, most of the researchers, and most of the administrators tend to be men who are not necessarily interested in women’s health. The reality is that while some disorders of women have received a lot of attention, like breast cancer, others have not.”
This could be because funding agencies are more likely to prioritise disorders that have bigger impacts and higher death rates, but without proper funding and research, women struggling with conditions like PCOS tend to suffer more than they need to.
Inadequate research on women’s issues also leads to treatments having higher side effects or being less effective for women. Sometimes, women go undiagnosed even in gender-neutral diseases such as heart attacks due to the differences in the textbook symptoms, which usually apply to their male counterparts. A study shows that women are less likely to receive a diagnosis of heart failure than men due to the lack of attention paid to women’s medical issues.
However, the cases of misdiagnosis she had witnessed personally were with women self-diagnosing due to having similar symptoms with other women living with it despite the fact that other health conditions may share similar symptoms. Sometimes, women are afraid to go to hospitals due to shame or fear.
A 2023 International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome, worked on by different professionals covering 71 countries currently being used in 196 countries globally, has been modelled to improve patient experience, quality of life, emotional well-being, emphasise the need for better healthcare education and expand the recognition of the broader features of the condition. It also provides an alternative for diagnosing PCOS by measuring a particular hormone called Anti-Müllerian hormone (AMH), which tends to be significantly higher in women living with PCOS.
“I work with evidence-based research as someone who struggles with it and works in public health. There are still lots of gaps in research, especially in African contexts. Even though Africans tend to be obsessed with having kids, I did not see any African body involved in the international evidence-based guidelines,” N’zallah says.
People in some parts of the world are finding solutions to help with PCOS, especially diet solutions, but the missing context in Nigeria and lack of research makes it more difficult for Nigerian women dealing with it to access the local things that could help them deal better with this condition.
Research breakthroughs are rare in Nigeria due to limited research funding and a lack of interest from policymakers. A study reveals that the lack of research is a result of 42.98 per cent lack of funding, 17.11 per cent brain drain and 8.85 per cent lack of motivation. Other factors that may contribute to this are a lack of research skills and mentorship. Nigeria is said to be one of the countries with the lowest rate of research funding worldwide, with less than 1 per cent of its GDP dedicated to research.
Infertility and social implications
“I have been married for about a year and have no sign of pregnancy. I am working on restarting my PCOS journey with a new doctor,” says N’zallah.
She started a social media campaign on her personal page to help create awareness of the condition, and many women reached out to her to talk about their experiences and ask for advice. “When I talk to newly diagnosed people, I try to help them understand and manage their symptoms.”
For women with PCOS, there is a likelihood of growing facial hair, and that usually causes social and psychological distress.
“I advise women on how best to get rid of their facial hair because when it started for me, I made mistakes that made me end up with bumps I am still unable to get rid of. I believe patient education will go a long way in improving the lives of people living with PCOS.
“When I was younger, I used to hear people say women that grow facial hair are wicked, and it took me years to learn that it is hormonal imbalance that causes issues like this.”
N’zallah hasn’t been sleeping well for a while due to the insomnia that comes with PCOS, and she believes that is also affecting the quality of her life and the other women struggling with it.
People sometimes believe that women must have done something to cause these issues despite the fact that the actual causes of it are unknown. “Nobody should be blamed for having this disease. People also keep asking me if I am pregnant when I exhibit symptoms such as fatigue even when I keep insisting I am not.”
N’zallah is getting more comfortable with people misunderstanding her and saying things out of ignorance.
“It’s even worse when you are using oral contraceptives as an unmarried woman because we live in a society where people like to judge and shame others. Many women are forced into constantly explaining themselves to people, which can cause them a lot of stress. Women also ignore symptoms or diagnosis just to escape that shame.” The fear of being seen with contraceptive pills on young women is largely influenced by purity culture that demands chastity from women.
She tries to encourage young women not to give up or get lost in other people’s criticism and misunderstandings. She tries to arm them with the tools to navigate their new realities.
“I would love to have kids someday, but my health takes priority. I believe even if I have a kid, I want to be healthy enough to raise it.”
Speaking on how PCOS has been regarded solely as a fertility issue, she says, “Due to the focus on infertility, a lot of people see it as an opportunity to capitalise on the poor women suffering by selling products that are supposed to cure the issue of infertility and a lot of women are falling for it.” These drugs can cause more implications for these women, adding to their risk of contracting other conditions.
“It is important to focus on the infertility issue, but it’s also important to focus on the health of women. I tell women that if health care providers reduce their issues to fertility, they should seek better health providers that will focus more on their health and wellbeing.” Women with PCOS have problems carrying babies to term, which leads to miscarriages and stillbirths.
Zallah is an avid volunteer with over ten years of volunteering experience, especially in health-related organisations, and she has come to learn that there is little or no support group for women struggling with PCOS in the country, making women struggling even more isolated and that is why she decided to use her voice to raise awareness.
When she is not creating awareness or working, she focuses on her photography, using it to document everyday life on her personal and professional photography page, ‘Idanuwa Na,’ and candle making. “I am an artsy person and I get relieve when I make things with my hands. I started making candles as a form of therapy and it has helped me a lot.”
Not an isolated case
Before Sakina Ahmad Bidda went to study in Dubai in 2014, shortly after she graduated secondary school, she had been experiencing weird symptoms that she didn’t take seriously- her periods started to get heavy with about 8 period days, but slowly, it reduced both in quantity and frequency.
“When I talked to people about it, they would say it’s probably an infection, but none of the treatments worked.” Other symptoms like acne, frontal hair loss and depression started soon after.
“When I went to school. I thought it was the change of environment that was leading to these symptoms, but they only kept getting worse.”
That was when she decided to fix a hospital appointment in 2016. The doctor she met was kind and understanding, she suspected she had PCOS even before the blood work and scan results came out. The drugs she was given helped her manage some of the symptoms. “I wished I had gone to the hospital earlier when the symptoms started,” she says.
“I also made dietary changes. I stopped taking sugar and everything that could escalate my condition into diabetes.”
But many changes still continued to happen within her body. “I started to grow a lot of body hair – especially on my face – and struggle with a lot of fatigue and brain fog.” The facial hair and acne affected her self-esteem.
At that point, the 27-year-old tried to find community, but even when she asked women with similar symptoms if they had PCOS, they didn’t seem to have much awareness of the condition. “But now things are getting better, I think there is more awareness and more people are speaking about it.”
There was a huge healthcare cultural shock when she came back to Nigeria. “The first doctor I saw kept arguing with me over my symptoms and refused to accept my earlier diagnosis.” He took it as an attack, believing she was trying to teach him his job and insisted on running another series of tests, which she went along with. But the diagnosis ended up being the same.
However, her treatment plan is more focused on fertility than anything else, she notes.
“The doctors didn’t really focus on my health or explain to me how this will affect me despite the fact that my symptoms have gotten worse.” She took another hormonal test recently and discovered there was an imbalance of hormones.
But Sakina feels that her symptoms usually get dismissed if it’s not fertility-related, so she started to get more worried about it, too. “I think most doctors think we are just there because of that and not because we are struggling badly in everyday life.”
Sometimes, they ask one or two questions about them but it doesn’t lead to active treatment. “I am just struggling to understand my new symptoms, and Google has been my biggest companion in understanding some of them.
“I don’t really share my experience with people apart from my loved ones. Once, before I got diagnosed, a cousin tried to convince me that it was normal not to see my period and that I was worrying too much about it.” When it comes to relationships, Sakina does not hide the truth of her condition and so far, she has not experienced rejection because of it.
“I am constantly anxious about not having kids in the future, and I also worry that people I am in a relationship with may say they do not mind that possibility, but it could end up becoming an issue in the future, especially if I don’t end up having kids.” Sakina is constantly weak; she can no longer do house chores without feeling drained or even opening her house gate anymore.
“They said my immune system has been compromised and I am constantly sick with other conditions.” Sakina is slim by nature, but she has met people who struggle to control severe weight gain and she sees how that affects them mentally.
Research by the British Journal of General Practice claims that out of 323 women dealing with PCOS surveyed, 74.9 per cent of them ended up experiencing mental health issues, but only 34.9 per cent of them were briefed about the impacts by their doctors.
“My brain also feels very muddled and I am finding it harder to go about my daily business. But for some reason, I keep being more horrified about the hormonal imbalance and possible infertility than all the other symptoms I struggle with.”
According to Dr Rufaidah Sa’ad Baba, a gynaecologist at National Hospital, Abuja, North Central Nigeria, “PCOS is a challenging condition to diagnose and manage. Diagnosis is very tricky, based on a criterion called Rotterdam criteria because most patients don’t present with the same symptoms. Management mostly depends on the patients’ symptoms and wishes. The reason a lot of doctors focus on infertility tends to be due to the fact that that’s the symptoms that most patients present with.”
Dr Rufaidah encourages lifestyle management, which includes diet and exercise, which can help alleviate menstrual abnormalities and improve ovulatory function.
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