“You have a condition called polycystic ovarian syndrome (PCOS),” confirms my GP.
I’d waited twenty-one years to hear those words.
“Do you plan to have any more children in the future?”
It always struck me how much emphasis doctors place on the reproductive challenges attributed to PCOS, despite there being so many other symptoms and health issues linked to the condition. Even when I, as the patient, didn’t openly express my fertility as a concern, the conversation always steered that way.
I reflected back to my teenage years when I had an inclination that my absent periods were abnormal. I chose to ignore the obvious signs, instead feeling smug that I didn’t have to worry about leaking into my white school stockings or having to haggle with the school matron to be sent home for excruciating period pains.
During most of my adolescence, I felt out of place with my thinning hairline, while my friends strutted around school corridors with their abundant gelled edges and fringes, looking like some sort of TLC tribute band. I didn’t know my fertility could be impacted one day. But I also know, that if my 12-year-old self was on the other end of the phone, my doctor would have turned me away, telling me: “You’re young, come and see me when you’re ready to start a family”.
That’s exactly what my husband and I did. It was now September 2016, two years into our nuptials, and a year into ‘trying for a baby’ with no joy. We say ‘try’ for a baby, when in reality each time felt like an attempt to storm Takeshi’s castle.
It took four years, hundreds of syringes, surgeries and pills later. Then finally, in February 2018, my husband and I welcomed our first son to the world.
The doctor continued to probe, trying to break the awkward silence.
“Miss Haye do you have any embryos remaining from your IVF cycle?”
“It’s Mrs, and yeah I do, but if you’re implying that I should consider IVF, that isn’t an option for me…I can’t afford it”.
“I can see you already have one —”
“Three children, (kind of), ” I interjected, making the point that getting pregnant, and staying pregnant wasn’t as straightforward for someone like me, who had experienced multiple miscarriages and an ectopic pregnancy the year prior.
He continued: “…to be frank with one remaining fallopian tube and a blocked ovary, your chances of conceiving naturally again are near to none.”
The conversation left me feeling like I was in limbo, but in a strange way, I felt relieved to finally have some answers after decades of searching for them.
Leading up to the diagnosis, and during that first lockdown, my periods seemed to have joined in with the social distancing, and by September 2020, I only had two cycles. It was at this point that I started to suspect that there was an underlying issue. The biggest tell-tale sign was my extreme weight gain, but my doctor wasn’t taking my concerns seriously.
It didn’t help that I was experiencing those symptoms at a time when a ‘fluffier’ waistline became the ‘new normal’ amongst other things. By late November 2020, I started to experience severe acne and abdominal pain and pushed my doctor to refer me for a scan. Coincidentally, it was around the same time the actor, producer and multi-hyphenate entertainment personality, Keke Palmer, uploaded an unfiltered picture of herself baring her acne, normalising the hormone disorder that can affect the skin, as a result of “excess of hormones called androgens,” says Dr Tosin Ajayi-Sotubo, a resident doctor on Channel 4’s Embarrassing Bodies.
Her most important message to her followers was to put our health first, so in true Keke style, I persisted, and finally managed to get a referral to the gynaecology unit while waiting to have my ultrasound, which finally led to my diagnosis in December 2020.
Keke Palmer’s recent pregnancy announcement, revealed during her Saturday Night Live monologue, resonated with me and so many other Black women with PCOS. PCOS is such a complex disorder, linked to so many health complications, but her news is symbolic of an ‘overcoming’.
It was bittersweet. On one hand, I didn’t feel emotionally or physically ready to grow my family, because I was still working through the trauma that came from nearly losing my life from the ectopic pregnancy. But on the other hand, I couldn’t shake off the reality that my ‘biological clock’ was ticking.
That’s why Keke Palmer’s baby bump reveal on Saturday night live hit different. Only two years before, the Nope actor confirmed her own PCOS diagnosis, exclaiming, “the least harmful thing PCOS can bring is acne.” And I felt that. While she made no mention of fertility challenges, seeing her glowing skin and growing belly felt like a moment of victory for her, but for other Black women too.
According to the PCOS charity Verity, the condition affects 1 in every 10 women in the UK, and up to 13% of women globally. The disorder also affects women of colour more frequently and severely than white women. In addition, research shared by the Black women’s health imperative (BHWI) shows us that Black women with PCOS have a lower chance of getting pregnant.
Dr Ajayi-Sotubo tells Unbothered that the difficulties in conceiving can be explained by the high androgen levels experienced in PCOS. She adds, “ [it] can interfere with ovulation, causing infrequent or no ovulation at all”. This essentially means that an egg is not released from the ovaries during a menstrual cycle and this lack of ovulation is what can lead to fertility difficulties in women with the condition.
“But it’s important to know that most women with PCOS will be able to conceive naturally,” Ajayi-Sotubo clarifies, “it may take longer or, [can happen] with the help of fertility treatment and different management options.”
In hindsight, getting my diagnosis also felt like some sort of closure. I had to accept that I didn’t have control over my body, but I did have the choice to turn my ‘pain into power’. Dr Ajayi-Sotubo confirms, “There is no overall cure for PCOS but it is important to know that there are a number of options that can help with the symptoms, or help prevent complications and assist with conceiving.”
Like Palmer, for me, those changes included eating a more balanced diet and a consistent fitness regime. That Christmas while my family enjoyed the succulent turkey crown, with every other possible meat garnished onto their delicate china, I tucked into my salmon.
The unwanted sprouts were piled on my plate. It was the biggest challenge for me to be disciplined at a time of the year when indulgence was on brand, but it started to pay off.
The next few months, my cycles became more regular but that didn’t last long (typical of PCOS), I thought I missed my period, but in fact, I found out I was pregnant. The pregnancy came with its own challenges, not to mention getting Covid six weeks before my due date, but I wasn’t surprised after learning that people with PCOS have an increased risk of catching the virus.
Upon reflection, that is the ultimate reason why Keke Palmer’s recent pregnancy announcement, revealed during her Saturday Night Live monologue, resonated with me and so many other Black women with PCOS. PCOS is such a complex disorder, linked to so many health complications, but her news is symbolic of an ‘overcoming’.
The difference between her post in 2020 to the one now, demonstrates how prioritising self-care and self-advocacy can improve your health outcomes. Many of her supporters shared the same sentiments, commenting on her post. Nutritionist and prominent voice in the Black maternal health space, Coach Gessie Thompson (@coachgessie) couldn’t contain her joy, congratulating Palmer on her ‘miracle baby’, declaring “PCOS didn’t win.”
Another fan thanked the mum-to-be, labelling her a #pcoswarrior, and praised the actress for being so open on her journey. What was poignant was the way other fans took Keke Palmer’s example, reposting her news whilst sharing their own stories. Such acts are a typical exemplar of ‘cysterhood’— an intentional play on the term ‘sisterhood’ to convey the large Instagram PCOS community — who share resources, and their PCOS journeys as a source of encouragement and hope.
I hope my story does too.
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