Around half of all cases of polycystic ovarian syndrome go undiagnosed, and it can be even worse in black women. Ore Ogunbiyi investigates how black women are being let down by the medical profession.
In November 2015, Courtney Boateng woke up in a pool of her own blood. Terrified and wincing in pain, she attempted to get out of bed. “I could barely stand, it was like my whole body had shut down”, she recalls. “It was the worst period of my life.” She crawled across the floor to the bathroom and trembled in the shower as she watched blood clots the size of Oreos go down the drain.
Eventually, Boateng, 22, would learn that she was suffering from polycystic ovarian syndrome (PCOS), a condition where the ovaries are covered in an abnormal number of small cysts or sacs, causing a number of consequences for the hormonal and metabolic systems. PCOS is the leading cause of infertility in women as it disrupts regular ovulation. According to PCOS UK, an organisation of UK-based endocrinologists and gynaecologists, research shows that up to 15% of menstruating women are living with the condition. That’s around 3.5 million women in the UK. However, an estimated half of these cases will go undiagnosed. The symptoms manifest differently in each case and doctors disagree about how the syndrome should be diagnosed.
What’s more, Dr. Stephen Franks, a Professor of Reproductive Endocrinology at Imperial College London, says that PCOS is commonly misdiagnosed because “there isn’t enough awareness amongst medical professionals, especially in primary care, about how common the syndrome is and how it presents”. Some symptoms, such as irregular periods, are often mistaken for signs of puberty or stress. For some people, the symptoms are so mild that they will never suspect an issue until they struggle to conceive. The range of symptoms makes PCOS hard to research, treat and diagnose.
According to the National Health Service (NHS), the average woman loses around six to eight teaspoons of blood in a typical period. “I could have filled buckets,” Boateng says. Her heavy bleeding carried on for two weeks, even though periods only usually last between three and six days. “I had to change pads every 45 minutes, I was bleeding through my clothes at home, and I could feel all these massive clots coming out of me.”
Irregular, abnormal periods like this are often put down to being stressed or overweight. Boateng was both, so the doctor she saw at her emergency appointment didn’t think much of her symptoms: “She just gave me ibuprofen and said bye.” Looking back, Boateng feels that the doctor underestimated her pain; a 2018 BBC report on racial and gender bias in healthcare affirms that this is a common story for black women. “I don’t normally come to the GP but if I’m telling you that something is not normal, I need you to react with some urgency,” Boateng says.
Muoyowa Jemide, 21, began to exhibit PCOS-like symptoms when she was 17. She went six months without a period, experienced drastic fluctuations in her weight, and was developing hirsutism – male-pattern hair growth in women that can come from the increased level of androgen hormones that PCOS causes. “I became uncomfortable with the hair when it started growing around my neck,” Jemide says. Her GP did a blood test and told her that she didn’t have PCOS. Instead, she was told that her hair growth and irregular periods might be due to a lack of sleep.
After another four months without periods, Boateng saw another GP who offered a blood test too. “Nothing’s alarming,” the doctor said of her results. “Your testosterone level is a bit high but it’s just stress.” After two more appointments and no improvements, she was booked for an ultrasound.
While there is no specific test for PCOS, there are tests for its symptoms. Blood tests are used to measure the body’s level of ‘androgens’, or hormones that are typically higher in males, and ultrasounds are used to look for any follicles on the ovaries. The third category of symptoms is menstrual dysfunction – including irregular, or abnormally heavy periods. The internationally-recognised ‘Rotterdam criteria’, the broadest diagnostic criteria for PCOS which the UK apparently subscribes to, recommends a diagnosis for women who show at least two of these symptoms. However, though Jemide met these criteria, her doctor did not diagnose her.
For Boateng, it took five GP appointments over nine months, and an ultrasound, before she was told she had PCOS.
One reason PCOS is notoriously difficult to diagnose is that it is considerably under-researched. According to Dr. Franks, PCOS UK – of which he is also chair – can no longer afford to have regular meetings due to a lack of funding for its work. In addition to his concerns that “reproductive endocrinology is not a well-taught subject speciality”, Franks argues that this lack of research means that specialists don’t understand exactly what causes PCOS and in turn, exactly how it should be diagnosed.
While these diagnostic challenges are felt everywhere, patients of the NHS suffer uniquely because the overstretched system makes it harder for patients to consistently see the same GP. According to a study published by the British Journal of General Practice last year, continuity of care fell by 28% between 2012 and 2017.
“Growing up, my mum had the same GP. I knew him, he knew me. But now, any Tom, Dick and Harry is just sticking their hand up my vaj!” Boateng says. Aside from the general discomfort, for Boateng this meant repeatedly having to explain her history with her weight, how her periods had changed, and the extent of her pain before receiving any advice from the doctor – all in the space of a 10-minute GP appointment. “I have noticed that these GPs are under so much stress,” Boateng says, explaining why she believes her diagnosis took so long. “They’re like ‘I want to help you but I can’t give you my whole day. Here’s a tissue, wipe your tears and go.’”
Jemide has lost trust in GPs all together. “They trivialised my pain”, she says. “They’re like, ‘I’m sure it’s nothing’ or, ‘we’ll call you if there’s anything’. But they never call.” She hasn’t been back to the GP about her concerns since. Instead, she is looking into freezing her eggs so that she can get ahead of the effects that PCOS may have on her fertility.
While Jemide wishes she had an official diagnosis, according to Boateng the confusion around PCOS does not end when you are diagnosed. Her doctor gave her a crash course in all things PCOS, from the importance of changing her diet, to the risk of infertility. “You’re telling me eat more broccoli and I’m hearing I can’t have kids. That’s all I’m hearing!” Boateng says. But one of the hardest factors for her to digest was that she will live with this condition for the rest of her life.
While Boateng can afford to put off questions about her future family, other complications pose more immediate threats. Developmental endocrinologist Sue Ozanne explains that “the majority of people with PCOS are insulin resistant and that means you’re more likely to develop Type 2 diabetes”. Since the body’s ability to digest sugars is compromised, people with PCOS are more likely to be obese. After her diagnosis, Boateng’s doctor told her that her risk of diabetes had “basically quadrupled” due to both her family history with diabetes and her PCOS. Although all women living with PCOS have to deal with this toll on their metabolism, studies show that black women are at an even higher risk. In simpler terms, this means that it’s harder for women like Boateng to lose weight and to keep it off and so she is more susceptible to other diseases.
Polycystic ovarian syndrome has no cure. The most that doctors can do is to prescribe medication to mitigate the specific symptoms that individual sufferers are most concerned about. Metformin, a medication used to treat Type 2 diabetes, can help regulate blood sugars. However, according to the NHS, it is not officially approved for the treatment of PCOS and the side effects of nausea and diarrhoea are extremely common. Those most concerned with family planning, may be offered fertility treatment. Both Jemide and Boateng were offered hormonal birth-control pills, which can help regulate periods, but they instantly rejected them. Birth-control pills often stimulate a variety of mood disorders, including depression, and for Jemide, the risk wasn’t worth it. “I don’t like the idea of the pill in general,” she said, “I’m already moody enough!”
Boateng’s reluctance to take medication runs deeper. Amid mental health challenges in her youth, she tried to commit suicide: “I had an overdose of paracetamol when I was 17 so I don’t like taking medicine.” Before she can deal with the physical aspects of her condition, her journey to accepting her diagnosis is first a mental health one. “PCOS is more than just I don’t get my period. It’s more than just a medical issue. It’s a social issue, it’s a mental health issue,” she says.
She looks back to that fortnight in November and for the most part, remembers being deeply depressed. “I had closed all the curtains. I was lying on my bed, eating like 70 Daim bars. There was nothing I could do,” she says. But ultimately, she is proud of how far she has come navigating her new life with this condition. She still has fears and unanswered questions that interfere with her life’s aspirations.
“As someone who wants to pursue a career, whether that be corporate, creative, or entrepreneurial, how is this going to affect me day to day?” she asks. With a condition like PCOS which shows up differently in each case, her doctors can’t offer her much consolation. “What is this going to mean for me as a CEO if four weeks out of every three months, I can’t get out of bed?” she asks, shaking her head in frustration. “I’m just waiting for that day when I wake up and my bed is stained red and it’s like, here we go again.”
Symptoms of PCOS can include irregular periods or no periods at all, oily skin or acne and excessive hair growth. For more information on PCOS, visit the NHS website here.