The lessons I learned from trying to get my PCOS diagnosis as a black woman in the UK
The first lesson came very early: not fall into a google rabbit hole.
It’s late and, once again, I spend hours scouring countless illegitimate medical websites, jumping to the worst possible conclusions. Months of confusion and pain have brought me here. A pain that has made it difficult for me to be away from bed every time my period comes. Confusion over why at 21 I live with acne worse than when I was a teenager and why I have to shave my legs almost every day. I’m desperately looking for answers and can’t stop looking.
I get more and more terrified as I read all the things that might be wrong with me, seeing words like “diabetes” and “heart disease” appear on the screen. But something on the NHS website catches my eye: polycystic ovary syndrome, or PCOS.
“Polycystic ovaries contain a large number of harmless follicles up to 8 mm (about 0.3 in)” the site reads. âFollicles are underdeveloped sacs in which eggs develop. In PCOS, these sacs are often unable to release an egg, which means ovulation does not take place.
Back then, they were just words on a page – they didn’t make sense to me – and yet they still had the ability to freak me out. I kept reading and my anxiety skyrocketed when I learned that one in ten women suffer from PCOS and, according to the American Journal of Obstetrics and Gynecology, Black women are more affected than others.
Maybe this is where I should have stopped scrolling, went to bed and called my doctor the next day. But I did not do it. I scrolled in more depth, learning that PCOS is one of the leading causes of infertility and may increase the risk of endometrial cancer. I couldn’t sleep at all after reading this.
A few weeks passed and I was far too petrified by my findings on the Internet to even think of acting on it. I suppressed those thoughts and moved on with my life until my period returned and worry caught up with me.
The next lesson was fun. I decided to tell my friends about my worries and learned that the old adage is true: a shared worry really is a worry cut in half.
After sending a message in the group chat, my daughters responded to my concerns with the perfect combination of comfort and rationality. They’ve sort of mastered the art of making harsh advice feel like a warm hug. They let me know how sorry they were for what I was going through while also dissuading me from my state of anxiety and advising me to seek help.
I listened to their advice, which led to another great lesson: a positive, proactive GP really makes all the difference. I called my doctor the next day to discuss my symptoms and she was all I could hope for – a woman who didn’t make me feel like I was dramatic, listened to my concerns, and calmed my worries. She suggested that I book a blood test as soon as possible.
I saw a nurse who took my blood and let me know I will have results by next week. They were testing for a hormonal imbalance, which is said to be one of the first indicators of PCOS. It wasn’t long before the results came and I finally learned that my LH hormone levels were higher than my FSH hormone levels, an imbalance that often interferes with ovulation. From there, my GP ordered that I do an ultrasound of my ovaries, uterus, and bladder, which would confirm our concerns and ultimately lead to a diagnosis.
The following months taught me another valuable lesson: waiting is the worst. While my GP was as attentive as possible, the system she was working in was not. Months have passed and I haven’t heard anything about my scan. With each passing day, my worry grew. But all I could do was wait.
In the end, it took about three months to get the call. This is where I learned one of the hardest lessons of all: the medical system can reject you. He can literally reject you. The doctor on the other end of the phone told me that my request for an exam had been denied. I didn’t even know it was a possibility. I have been fortunate to have little experience navigating the health care system, but I did not expect people to simply say “no, we will not help you”.
It hurt. All of a sudden my anxieties of not being believed rushed to the surface. The doctor told me that they didn’t think I had PCOS because, despite everything, my period still came every month. But I knew from my research that bleeding did not equate to ovulation. Instead, it can be “anovulation”.
Fortunately, my GP was not shaken. She calmly let me know that she was going to appeal and, thanks to her persistence, I was finally selected for a scan.
The scan took place two weeks later, and during those fourteen days, I reverted to my old Google search habits in an attempt to prepare for this invasive procedure. I was pretty petrified and the cartoon drawings online didn’t do much to allay my fears.
Upon arrival, I was checked in and quickly led into a small room with two middle aged white women. I expected a warm welcome, with two mom-like characters who would calm my nerves – but I couldn’t have been more wrong. The room was cold and not from the temperature. They gave me basic instructions on what to do without trying to ease my nerves or arguing to reduce the awkwardness of the procedure too close to be comfortable.
To my surprise, the scan itself didn’t make me uncomfortable, but the interaction with the nurses did. And so, I learned another lesson: Healthcare professionals are not always so professional. Or nice. Or useful. Despite the relief that the scan itself gave me only slight discomfort, I couldn’t shake the nurses’ treatment, which was even more hurtful when I heard them strike up a brilliant conversation with each other after leaving. the room.
I immediately took advantage of the group chat to share my experience. Again my friends were heartwarming yet honest, attributing what happened to my dark skin. I knew racism, I knew medical racism, and yet I was horrified to think that this could have happened to me. I was aware of the reasons black women are so often looked down upon by medical professionals and why they often perform worse than their white counterparts. This is because we are not seen as fragile or vulnerable. Our fears and our pain are often undermined. We are simply “strong black women” and so there is never much effort to treat us gently. However, knowing all of this still hasn’t prepared me to experience it firsthand.
I guess the last lesson was the most important of all, even though it didn’t sound like it at the time. It came after the phone call that finally confirmed I had PCOS. âYes, I thought soâ were the exact words I said when the doctor told me and honestly the main emotion I felt was relief. I was relieved to have an explanation for the horrible symptoms and some sort of conclusion after months of unanswered questions.
The lesson was to always trust me. I was consoled by the fact that I had been persistent enough to fight for a diagnosis despite the constant setbacks that almost convinced me to remain silent. As the journey to my diagnosis – the wait, the rejections, the gas lighting, the abuse – hurt more than it healed, I finally had an answer. I was proud that I hadn’t given up and demanded the best for my body.