The health issue affecting 1 in 3 women you’ve never heard of

As work stress mounted, so did the symptoms: night terrors, adrenal fatigue, brain fog, anemia, excruciating back pain, and swelling and inflammation. I became stuck in a swirl of negativity. I broke out in random rashes and had my first panic attack. I lost friends and my ability to lightheartedly communicate with others because I knew nothing but darkness and pain.

“All your blood work is within normal range,” my doctor would say as I sat hunched and miserable in her patient chair. I returned multiple times, begging for more detailed blood tests, knowing that something must be wrong with my hormones. But I was informed that when blood tests come back within normal range, there’s no basis to request further analysis.

Trusting my doctor and desperate to pull myself out of the nightmare, I instead tried everything from nutrition plans and therapy to energy healing and Ayahuasca ceremonies (Shaman-led plant medicine rituals), but relief was fleeting.

This rollercoaster dragged on until early 2019, when fate landed me on a fasting retreat in Thailand. My body and mind responded remarkably to the week of detox. I felt mostly like myself again, a tiny miracle.

Convinced my diagnosis was a destroyed gut microbiome from parasites years prior, I quit a promising job in Sydney to spend the year healing my gut in Bali. However once there, blood work quickly revealed my body’s detox centre, the liver, had been under chronic stress and was the main concern.

While friends went for drinks and ate at the island’s countless beautiful cafes, I spent my time on liver support protocols, sober and sugar-free, taking herbs and doing acupuncture, sauna and colonics. I turned 34 feeling the best I had in years.

I spent my time on liver support protocols, sober and sugar-free, taking herbs and doing acupuncture, sauna and colonics. I turned 34 feeling the best I had in years.

But returning to Australia in 2020, in the midst of the pandemic, I faced the shattering realisation that my symptoms redeveloped unless I remained on strict detox protocols. At my wit’s end, I began educating myself on the liver, learning that in addition to processing toxins, one of its main functions is to regulate and excrete hormones.

It was time to revisit my fibroid.

Not your ideal plot twist

During the next ultrasound appointment I discovered there’d been a gross oversight in my scans. Not only had my fibroid increased to the size of a grapefruit, but to my surprise, the sonographer mentioned a second, orange-sized growth.

The second fibroid had been included in my previous two reports but, unbelievably, my GP had failed to notice it. From the first time we’d discussed the initial fibroid, I’d had two.

Now totalling 14 centimetres – the size of a small rockmelon – surgery was not only overdue but my only option. I changed GPs and was immediately referred to Dr Choi.

Propelled by shock and regret, I dove into my own research and became the kind of patient Dr Choi politely described as “highly engaged and inquisitive”. Thankfully, she encouraged my endless questions, explaining that it’s imperative females feel empowered by physicians who understand our needs and concerns.

Filling in the blanks

An MRI revealed my two fibroids had merged together in what Dr Choi described as a “snowman”. It was causing abdominal distention, swelling out below my belly button.

“You’re presenting as five months pregnant,” Dr Choi exclaimed in our first consult. It took me a beat to realise the enormity of this statement: my body had been functioning under pregnancy stress for four or so years.

Suddenly, the motley crew of physical and emotional symptoms I’d been suffering started to make sense.

Larger fibroids in certain locations can push on internal organs and joints and even lead to painful or uncomfortable sex. The constant pressure of the growth can impact gut health, disrupt the pelvic bowl and create a domino-effect throughout the body.

For me, that included pelvic misalignment or tilt, causing referred pain in my hips, back and neck; bloating and swelling; a compacted colon; and worst of all, a compressed bladder. I was making upwards of 15 bathroom trips a day.

Dr Choi explains that pressure symptoms are vague and varied and as a result, can be easily overlooked by both patient and GP. Add to that both the female tendency to push through discomfort and the “gender pain gap”, and large growths in particular locations can fly under the radar for years.

Period irregularities are more easily recognised as common symptoms of fibroids, cysts, polyps and endometriosis. If you experience heavy and painful periods or random bleeding throughout your cycle, the cultural script that this is “normal” is incorrect – your body could be sending you a message.

Now totalling 14 centimetres – the size of a small rockmelon – surgery was not only overdue but my only option.

Traditional Chinese medicine practitioner, acupuncturist and founder of Sydney’s The Dao clinic, Elizabeth Cullen, believes that women should connect to their periods and open a dialogue with health practitioners.

“The menstrual cycle is a female’s monthly report card and a beneficial way to check on one’s health each month,” says Cullen. “Many women tolerate symptoms such as expected pain with the cycle and spontaneous and heavy bleeding, but they shouldn’t ignore them.”

“We have now raised generations of women who have ‘got on with it’ without knowing that the monthly bleed can be an inherent strength rather than a burden”.

It’s all about the hormones

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The most crucial yet difficult piece of my health puzzle was deciphering why my symptoms were also mental and emotional. Unfortunately, when my GP initially explained fibroids to me, she’d buried the lead: fibroid growth is linked to hormones like oestrogen and progesterone.

While fibroids are not the cause of hormonal imbalances (you’ll likely have existing issues that could then result in fibroid growth), it is possible for larger growths to actually intensify hormonal symptoms.

“Fibroids do not cause hormone issues directly,” Dr Choi explains, “but if someone suffers from hormonal symptoms, the presence of large fibroids may make them more noticeable due to its pressure effects”.

In that way, my fibroid had been a flashing siren, alerting me to hormone dysfunction.

Physical pain I can tolerate, but my emotional symptoms were crippling. I’d become hypersensitive, easily stressed and irritable, and experienced mood swings, anxiety, exhaustion, trouble sleeping, premenstrual dysphoric disorder (PMDD) and an intense bout of depression.

Finally learning that my fibroid had been exacerbating my hormonal imbalances helped me understand that I wasn’t “broken” or “crazy”. I had a logical reason as to why it felt like my identity had evaporated.

Alternative modalities such as Traditional Chinese Medicine (TCM) are well-versed in the role oestrogen and progesterone play in fibroid growth.

“The TCM focus is on investigating why a patient has experienced a fibroid in the first place,” says Cullen. “[This involves] restoring hormonal balance to prevent further growths, in addition to encouraging overall balance in the entire body”.

We’re often told fibroids cause no symptoms and this default stance in medicine meant that it took many years and multiple doctors to have both pressure symptoms and hormone implications discussed seriously.

Modern medicine also favours a “wait until surgery” approach, but once you’ve grown fibroids, you’re at higher risk of growing more. Surgery isn’t a cure-all.

Bias in gynaecology is holding us back

Despite 80 percent of women developing fibroids during their lifetime, modern medicine still lacks a nuanced understanding around their cause and treatment.

“We’re not exactly certain why women grow fibroids; it’s usually multifactorial,” explains Dr Choi. “Most of the cases are idiopathic, which means no known cause”.

While surgical removal has made huge strides reducing invasiveness for women through robotic-assisted laparoscopic (keyhole) surgery, medical treatments that focus on prevention and management remain worryingly inadequate.

“Globally, uterine fibroids are among the most significant diseases of reproductive-age women,” writes James H. Segars, MD in his 2020 study into fibroid research.

“Despite the magnitude of the problem, nonsurgical and medical options for treatment are extremely limited. One reason [is] that funding for research on uterine fibroids has been sparse in comparison to the scope of the problem”.

It may feel counterintuitive to question your doctor, but considering the lack of research and palpable gender bias facing female health issues, it’s important to advocate for yourself and “get informed using reputable sources to know your best options,” says Dr Choi.

My quiet, slow road to recovery

Ten months after a robotic-assisted laparoscopic myomectomy, my journey is centred on hormonal recovery.

Under the care of an incredible new GP who specialises in both hormones and gut health, my five-year mystery struggle is over. I finally received my diagnosis: what I’d experienced in 2015 was hormonal collapse. After this appointment, I sat in my car and cried.

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All I’d needed in 2015 was a few extra blood tests to discover multiple hormonal imbalances and a hereditary liver variation that affects hormone processing and excretion. One result was long-term oestrogen dominance, which can lead to fibroid growth.

While my 14-centimetre snowman may be gone, my body still echoes its impact. My pelvic tilt continues to cause back and hip pain, something I’m correcting with a physical therapist. I still struggle with stress, weight and other hormone-controlled issues, but things are gradually improving. Mentally, I sometimes have moments of bitterness and regret at losing five years of my life to a largely avoidable situation. But these are now my lessons to share.

Irrevocably changed by this experience, I’m no longer afraid to trust my intuition, push for my needs to be taken seriously or leave practitioners who aren’t serving me. Now deeply connected to my body, I finally understand – it is solely my job to protect her.

“Be the driving force, suggest that you should take some tests, because a simple thing like an ultrasound scan can make a huge difference,” says Dr Choi.

Just remember to ask for your own copy.

Women’s Health Week runs 6-10 September 2021.

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