Our teenage years, while some of the scariest and fast changing, often remain fond memories for the rest of our lives. Stories of days in the sun, falling in love, going wherever we please and laughing until we fall over. ‘The best years of our lives’ they call them. The ones you’ll miss forever. The ones you’ll never stop talking about. The ones you’ll always hold higher than any trials and tribulations you experienced.
But what if those trials and tribulations actually had the power to change your whole life?
If not in practice, just the idea of your life panning out differently than planned is troubling to say the least. Especially as a child.
For me, the way I had always envisioned my life was ground to somewhat of a halt on a summer’s day in 2013. That day, a curveball was thrown at the memories I would come to hold of my teenage years. It was the day I was found to have a worrying amount of cysts on my ovaries. What I would later discover was a little condition we like to call Polycystic Ovarian Syndrome.
My early teenage years were spent in and out of the GP’s office. I had suffered from the same ongoing symptoms for years. Tiredness. Never having a regular period from the moment they started. Mental health issues. The works. While I had been conditioned to think these things were a normal part of growing up, my mum wasn’t quite so convinced. Doctors in their droves were convinced it was diabetes. I was on a first name basis with the hospital nurse who repeatedly took my blood. Yet, when every test came back negative for diabetes, back to the drawing board I would go.
Eventually, I grew tired of it all. I was finally at an age where I felt comfortable speaking for myself, and I wanted answers. I demanded answers. And it was then the words Polycystic Ovaries began to be thrown around. Another few months of tests – ultrasounds, more blood tests and more questions than I’d ever been asked before – confirmed the doctor’s fears. A letter came through the door outlining everything I had already been told. And then: nothing.
In my final appointment with the GP, I expected a lot. As a 15 year old I had little experience of any medical conditions. Expecting my mind to be put at ease by the friendly female doctor I’d been assigned, I walked into the room with a number of questions. But as I took a seat, noticing a pathetically thin leaflet placed towards the end of the desk, I began to realise quite quickly that my questions were not likely to be answered that day.
“So, you have PCOS then?” the doctor asked. Is this not a question she should know the answer to?, I thought.
“Yes” I said, “I’m okay though, aren’t I?”
“Well yes, for now”
Almost as if she was speaking in some kind of code, the doctor insinuated that somehow there would come a day where I was in fact, not okay. As a child. As a human, that’s not something you ever want to hear.
She went on,
“You might struggle to conceive if and when the time comes. And you might want to think about losing some weight, but it might be difficult. And we’ll put you on the pill, that should deal with everything else.”
That was it. A year of my life, more tests than I could count, and even more sleepless nights from worry. All simmered down and “solved” with the pill.
I walked in expecting to be informed. I wanted to know what was happening to me. Instead I left in tears.
As my life was thrust into a state of unknowing, with no avail from medical professionals. It was google I turned to, for any small glimmer of hope about the condition ravaging my reproductive system.
PCOS is defined by science as a “common condition which affects the way the ovaries work”. Scarily enough, someone with no knowledge of the reproductive system could easily not see an issue with that.
I was one of them.
My doctor telling me I would have irregular periods for the rest of my life and maybe grow some excess hair was enough to bring 15 year old me to tears. But after calming down and realising it was manageable, my diagnosis didn’t seem quite so daunting. Members of my family even managed to convince me nothing much was going to change.
After being sent away from the GP with a prescription for Rigevidon, I was under the impression that my condition was being “managed”. My periods were regular, though looking back, far from normal, and my other symptoms were suppressed for the most part. However, I would later come to discover a number of dangers associated with Rigevidon that I had not been made aware of. Dangers that I wasn’t willing to risk. I stopped taking those pills with immediate effect. It was then that I became aware of every danger PCOS was putting me at risk of. Risks that should have been boldly outlined upon being diagnosed. Dangers that I should have been informed of by a medical professional, not through extensive panicked Google searches, at 3am in my childhood bedroom.
Diabetes. Depression. Anxiety. Infertility. High blood pressure. High cholesterol. Heart disease. Stroke. Cancer.
While most of these risks are only prominent in later life, to me they seemed too serious to not have been mentioned at diagnosis. I felt let down. Let down by a healthcare system I had trusted my entire life. A healthcare system I believed was there to protect people. Nevertheless, I knew there was nothing that could be done. Despite feeling let down, a sort of calm came over me, finally having more of a grasp on what was going on in my own body could only be described as relief.
As my body adjusted to life without the pill, I began to see my symptoms come back to life with somewhat of a vengeance. My periods almost automatically disappeared, acne and excess hair growth reared their ugly heads, and my weight began to fluctuate again. I decided these symptoms were nothing I couldn’t manage. Not seeing any risks involved with irregular or non existent periods, I decided I could keep on top of everything else and my life would be better not relying on medication.
Only a few years would pass with almost non existent periods and an ongoing battle with other symptoms before I would come to be informed that having no periods was quite likely to be resulting in my womb lining thickening. This, I would discover, had been putting me at a much greater risk of developing endometrial cancer. Something else which I was not informed of at the time of diagnosis, nor in any further checkups that took place with nurses. After experiencing the loss of my grandmother to cancer, the idea that I was unknowingly putting myself at risk of the same thing after willingly coming off of contraception was terrifying to me. I’d seen the way the disease had ripped apart my family within a matter of months and I did not want to be the one responsible for putting my family through anything like that again. The fact that it could be my own fault was something that haunted me for a long time and still does to this day. Yet, I knew it couldn’t possibly be entirely down to me. I knew that if I’d known the risks, I wouldn’t have come off the pill by choice. So many “If I hadn’t” and “if they hadn’t”s, in the end it all came down to one.
If I hadn’t been failed by the healthcare system.
But if I hadn’t, I wouldn’t be writing this piece. So we’ve come full circle.
Experiencing what I did, though the opposite of how I wish it was handled, fuelled me with what could only be described as a need. A need to discover whether I was the only one experiencing this treatment from doctors. And if not, why on earth was this happening to so many women.
As it turns out, it appears that most women experience the same process of diagnosis and treatment with medical professionals that I did. A simple web search came to show that women from all walks of life with all manner of health conditions were frequently treated as overly emotional or not taken seriously when reporting health problems. What’s more, women are often forced to wait significantly longer periods of time to receive a diagnosis than their male counterparts. The reason? Lack of research. More precisely, research only carried out on males.
While a big disappointment, this information did not come as a huge surprise. As a female in a male dominated world you tend to learn not to be shocked when yet another area of society neglects to include female points of view. Still, this discovery only made me more eager to speak to women experiencing what I had. I wanted to try getting to the bottom of the problem.
Abi Folmer, a student from Grantham, was the first of a number of women eager to speak to me about their experiences with Polycystic Ovarian Syndrome, believing that more awareness needed to be raised about the symptoms and further dangers of the condition.
Keen to hear her thoughts on the subject, amongst the Covid-19 craziness I sat down for a telephone interview with Abi. Despite a number of burning questions in the back of my mind I was especially interested in her own telling of her story.
Aged 21, Abi told of her experience of PCOS symptoms beginning around the age of twelve.
“Despite my symptoms, being diagnosed with it was somewhat of a surprise. I first went to the doctors about my symptoms around age 15, but the lady I saw was quite apathetic. She told me it sounded like PCOS but that she wasn’t going to diagnose it, she’d just give me the pill instead because I was around the age of “needing it” anyway. I wasn’t given any information, just sent away thinking I was fine. Thinking that if I had a serious condition they would want to diagnose it.”
Immediately, my mind was cast back to my prior research, and my own experience. Not being taken seriously, being sent away with the easiest option. The long dragged out diagnosis process.
“Two years later I was diagnosed with a rare condition called Trigeminal Neuralgia, the treatment for that is an enzyme inhibitor. In short, it renders the pill useless for all its purposes. Including the treatment of PCOS. Not knowing I had PCOS, doctors told me to use condoms for contraception and sent me on my way.”
Two years and counting, I was beginning to wonder if medical staff were ever going to take Abi seriously. Why had her underlying condition not sparked discussions about potential other problems? Was this yet another product of a severe lack of research? Or just another example of a lack of care?
“Without the pill my life became a lot more stressful. Being sexually active with irregular periods meant constant pregnancy scares, and a lot of money spent on pregnancy tests. I had little options when it came to permanent contraception, and the options I did have weren’t working with my body.”
“Moving to uni gave me the opportunity to join a new doctor’s surgery. I initially returned in the hopes of changing my Neuralgia medication so I could go back on the pill, but as soon as I started describing my symptoms the doctor flagged up PCOS and sent me for the tests I should have been sent for years ago. After that I finally received a diagnosis. This was a year and a half ago now.”
For me, diagnosis took almost two years. For Abi, three and a half. Not unlike my own situation, Abi also told of the information, or lack thereof, that was provided to her upon receiving a diagnosis. Proving once again that many women’s experiences with health conditions are insufficiently managed in contrast to those of males.
Speaking to a number of women with age ranges as wide as 25 years, each and every one complained that their situation was not handled well. Now, I cannot and would not ever suggest that these women speak for all. But knowing that 1 in 5 women in the UK suffer from PCOS, yet finding a female with a positive diagnosis story was near impossible. In my head I couldn’t help thinking that this was more than just a lack of research. It felt like all women were being failed. And imagining the scale of damage this had likely caused to so many women created a knot in my stomach that would not shift.
Recently, I’ve become increasingly concerned with how little I was informed about a condition affecting my own body. With every passing day it feels like I discover yet another future health concern I could be faced with as a result of PCOS, yet I can’t help but feel it’s all beyond my own control. I’d be lying if I said it wasn’t a terrifying thought to dwell on.
Between my own experiences, those of other women, along with the discovery of staggering facts about a gender health gap, it became clear to me that we really are further away from equality than we could have ever imagined.
Lynn Enright, touches quite heavily on the underestimation and mishandling of women’s health in her book Vagina: A Reeducation. She recounts a tale of undergoing an agonising medical procedure known as a hysteroscopy, while the doctor performing it very severely underestimated the amount of pain she was in. Later going on to discover that the most common pain relief for that procedure was general or an immediately administered local anaesthetic, she felt she had been forced to suffer for no valid reason.
Quite shockingly, an entire chapter of her book is dedicated to discussing the way in which the subject of pain is approached as it applies to women. Within such she tells of the way she left the hospital with a sheet of paper labelling her “particularly sensitive to pain”, causing her to question all instances in her life when she had experienced pain, and second guess herself about her own reaction to it.
“I felt vindicated. I am not a person “particularly sensitive to pain”; I am just a person who was subjected to extreme pain and expected to muddle through on some over-the-counter painkillers.”
The idea that to be a woman involves pain is one that Enright appears to categorically resent. And I’d be willing to bet that her views aren’t too dissimilar to her fellow women.
Far too much evidence exists to prove that in most situations, women’s response to their own experience is considered by medical professionals to be emotional, psychogenic, hysterical or oversensitive. With the National Institute for Health and Care Excellence in 2017 having to inform doctors that they must “listen to women”, it remains clear that women continue to possess very little control, or bodily autonomy. Something women have been continually fighting for for decades.
Every woman I’ve had the chance to speak to believes the gender health gap significantly impacts a woman’s sense of bodily autonomy. Hypothetically if the opinions of these women reflected those of every woman suffering from PCOS, that’s over six million women. Six million women who feel out of control of their own bodies. Six million women failed by the healthcare system. That’s without even touching on the women suffering from a whole host of other conditions. It seems the longer we go without sufficient research into women’s health, the more women we’re inviting to feel the exact same way. And as long as we feel this way, the longer we remain inferior to men. I can only speak for myself, but it occurs to me that this may be the very thing they want.
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