"My PCOS took over four years to diagnose. Here's what I've learned…"

Those four letters can elicit fear, sympathy and dread. Polycystic ovary syndrome (PCOS) is a hormonal disorder that affects up to one in eight women of reproductive age, yet many of us are waiting almost half a decade for a diagnosis – and what often feels like an eternity for any support.

More than a third of women with PCOS have to wait longer than four years for a diagnosis, while 38 per cent of women surveyed did not receive any follow-up resources once they received a diagnosis, according to a recent report. I had this experience, too. A couple of weeks ago I received a formal diagnosis of PCOS. It has taken four years, for something I now realise has been a lifelong problem.

Early suspicions

PCOS is identified by having at least two of the following three symptoms: irregular periods, excess androgens (male hormones) and a scan showing polycystic ovaries (fluid-filled sacs on enlarged ovaries). Other common symptoms also include difficulty getting pregnant (PCOS is one of the most common causes of female infertility), excessive hair growth (due to excessive androgen), insulin resistance, weight gain, oily skin and acne. Having PCOS can also increase the chance of developing type 2 diabetes, depression, high blood pressure, high cholesterol and sleep apnoea.

Sugar crashes, unruly hormones, crippling periods and secondary infertility are just some of a long list of symptoms I’ve experienced over the years, but have been attributed by professionals to being part of my monthly cycle. But I’ve always suspected something wasn’t quite right. Even my friends and family have learned to carry snacks with them between meals in case I ‘dip’ or ‘crash’. Like a Tamagotchi, I need feeding regularly. This extreme reaction to sugar (or lack of), led me to suspect diabetes, but blood tests have always come back as normal.

Worsening symptoms

After having my son six years ago, my symptoms reached the point where I could no longer believe them to be ‘normal’. There have been sugar crashes that have found me shaking, tearful and close to fainting in public. My periods restarted with brutal force just four months after giving birth, ironically on Mother’s Day 2020, so painful and heavy, with moods so erratic they’ve felt like a full-time job in themselves to look after. Essentially, during days 14-28 of my cycle, I’m hijacked by my hormones.

But the GP told me that’s just how my periods were – everyone is different, they said. I would marvel at friends for whom periods and hormones were a minor inconvenience that could be treated with chocolate and a hot water bottle, as opposed to being as demanding and raging and attention-seeking as my screaming newborn.

I was offered a choice of medication for either excessively painful periods or excessively heavy periods; I requested both. There was also the option of going on the contraceptive pill, mainly to stop my periods, but at this point I wanted to remain open to the option of trying for another child.

If only it were that simple. We spent months trying to no avail with no real understanding as to why it wasn’t happening. Then a positive result led to a debilitating missed miscarriage, and then another after more months of trying. It was clear something was up. Investigations with internal probes, scans and general anaesthetic couldn’t find anything.

Finally I was given a diagnosis: PMDD (premenstrual dysphoric disorder, a severe form of pre-menstrual syndrome). It could be the reason for my painful, heavy periods and mood swings, but still didn’t explain the secondary infertility, the erratic blood sugar levels, the weight gain or the chin spots developing across my otherwise clear skin.

Alongside painkillers, I attempted to manage my PMDD and raging hormones through exercise and cycle-syncing. I endeavoured to plan my social and work calendars around the difficult days of my cycle, but given that this was in fact half of the month, it was easier said than done. I decided to halt trying for a second baby. I wanted to get a handle on my hormones and PMDD naturally, if possible, and without the gruelling cycle of trying and waiting, and alternating between hope and disappointment.

Unexpected diagnosis

We don’t need to dwell on the last two years – save to say that it was in fact a GP appointment to discuss, again, one of my persisting symptoms that inadvertently led to a PCOS diagnosis. Frustrated with seemingly always treating the symptom and not the cause and still strongly suspecting a hormonal imbalance outside of my PMDD, I pushed the GP to consider all my symptoms in the round.

Within minutes of discussing my cocktail of chin acne, unruly hormones, secondary infertility and sugar crashes, I was booked in for an ultrasound scan to check for PCOS. I had to confess, I didn’t have much of an understanding of the condition, but it gave me a lead, something to research, and was a potential explanation.

Abnormal ovaries

When the sonographer confirmed my left ovary looked normal, I also felt a deep wave of frustration. Surely it was PCOS? It made so much sense. But then came the words: “Your right ovary is really big and looks very PCOS-y.” And there it was. A diagnosis. Almost. I just had to speak with my GP and receive a formal diagnosis.

But it wasn’t as straightforward as the scan had led me to believe. Remember the need for two key symptoms to receive a diagnosis? First I had to have blood tests to test my androgen hormone levels, and when these came back as normal I had to wait for more blood tests, and when these also came back as normal, I felt like I was back at square one. I wasn’t offered a follow-up appointment because my blood tests were normal, and the GP that had originally suspected PCOS had left the surgery. But again I pushed for an appointment to discuss the findings from the scan, and a diagnosis of PCOS was given due to the scan results and my chin acne and signs of excess androgens.

Late diagnosis complications

As they say, it’s been a journey. A four-year struggle to cope with everything my body was throwing at me and to get medics to understand the levels of pain and hormonal turmoil, just to be told that everyone’s periods are different. I can’t help but feel somewhat frustrated and let down that it has taken so long to arrive at a diagnosis, and stories about women’s pain not being taken seriously resound deeply.

I also can’t help but consider that if my PCOS had been identified sooner, I would have at least been aware that infertility and secondary infertility are commonly associated. I could have perhaps been spared a lot of pain when trying for a baby, or at least been better informed. I would also have time on my side – as my 40th birthday approaches, I can’t help but grieve for the time that has been lost in the process. I of course do count myself incredibly lucky to have a child, and for that pregnancy to have thankfully been straightforward.

Treatment options

PCOS isn’t curable, but the symptoms can be managed. The contraceptive pill is one option, but obviously not something for those looking to conceive. Metformin, which helps to lower insulin and glucose levels and is commonly used to treat type 2 diabetes, is another. Other than that, it’s the usual suspects – not smoking, regular exercise and limiting UPFs. Increasing protein intake and strength training are also believed to help.

I’ve opted to try metformin, alongside lifestyle tweaks such as incorporating strength training into my routine, and I’m now four days into taking it. I’m relieved to have something to try after years of not knowing what was going on with my hormones and glucose levels, and to have an increased awareness of what’s going on inside my body. I don’t as yet feel any different physically or hormonally, but I do feel more mindful, informed and at peace with my body – which has got to count for something.

For anyone in a similar position, with doubts regarding a diagnosis or instincts that there’s something more at play, I would recommend persistence. A UK government survey showed that 84 per cent of women said they weren’t listened to by a healthcare professional and 50 per cent felt their pain was disregarded or overlooked. Knowledge is power, so familiarise yourself with key diagnostic criteria, and don’t accept that it’s “just your hormones” or “just your period”. Medical journal The Lancet appealed to the medical community for greater equity in healthcare, claiming “women are enduring delays in diagnosis, inadequate pain management and disparities in access to appropriate care for many conditions, in particular those related to gynaecological conditions. These factors exacerbate their suffering and diminish their quality of life.”

Two years ago Endometriosis UK surveyed patients and demonstrated an increase in diagnosis times, at an average of nine years. Most respondents needed more than five GP appointments before receiving a diagnosis, and half ended up in A&E seeking an answer. Verity, the PCOS charity, points out that, “even when PCOS is suspected, the pathway to diagnosis and care can be labyrinthine. Patients are often bounced between dermatology, endocrinology, gynaecology and fertility services, without a clear or coordinated plan, or left to coordinate (or fight for) their own care across multiple services.” They also report an over-reliance on blood tests – with medics treating these as a definitive diagnostic tool when they are just part of the picture.

If something feels off, it may well be so. Push for answers, blood tests and scans. Remember that you’re entitled to a second opinion. There’s still a very long way to go when it comes to raising awareness for PCOS and reducing diagnosis times, but hopefully by sharing my long and winding pathway to diagnosis it will encourage people to advocate receiving a diagnosis for theirs.

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