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Everything you need to know about Cushing’s Syndrome

We all know how important hormones are for your health, so when they’re out of whack they can wreak havoc on your body.

When you take medication, the hope is that it makes your problem go away. And, with the guidance of clever doctors or other medical professionals, that’s usually what happens. 

The prescription is written, then taken to the chemist, and ideally, the condition is either managed, prevented, or cured. 

However, sometimes it’s not that simple, and taking medication for one thing can impact the body in other ways – either through an interaction with another medicine, an underlying disease, or just as a side effect. 

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For people who take Glucocorticoid medication, for the management of auto-immune diseases, inflammation, or asthma, the intended result is that the conditions are managed. But sometimes, people can develop a rare illness as a result of these steroid hormones, which can throw things out of whack. 

For some, that results in a form of extreme and hard-feeling “weight gain” around their upper torso, which can result in the patient looking pregnant. It’s called Cushing’s syndrome, is caused by the body making too much cortisol – or from taking medications like Glucocorticoid which mimic the effect of cortisol. 

It’s hard to diagnose because other illnesses have similar symptoms, but in the rare case you do have Cushing’s, it can have distressing knock-on effects to your health. 

We asked GP Dr Kavita Jade to share the key things everyone should know about Cushing’s disease, including symptoms, why it happens, and how to cure it. 

What is Cushing’s Syndrome? 

“Cushing’s Syndrome is caused by an overproduction of the hormone cortisol,” says Jade. “It leads to a range of symptoms.” 

So first, what is cortisol? “Cortisol is our primary stress hormone, along with adrenaline and an activation of the Sympathetic Nervous System or fight or flight system,” founder of Body Clinic Sydney, Nigel Morgan tells Body+Soul. “Cortisol is released from the adrenal glands which sit on top of the kidney in response to a signal from the brain when we perceive something to be stressful.  

“Evolutionarily, the stress response is what kept us alive, it allowed us to survive starvation, extreme weather, and physical threats. However, it doesn’t matter what the type of stress we experience is, we activate the same system of cortisol release into the bloodstream as the defence.” 

Cushing’s syndrome happens when the body has too much of the hormone cortisol for a long time, writes the Mayo Clinic

“This can result from the body making too much cortisol, or from taking medicines called glucocorticoids, which affect the body the same way as cortisol.” The same goes for corticosteroids, says Jade. 

She also notes that there’s another cause of Cushing’s syndrome, which is “due to a pituitary or adrenal tumour”, which can similarly stimulate cortisol production. 

What are the symptoms of Cushing’s syndrome? 

Most of the symptoms of Cushing’s syndrome come from the high level of cortisol itself, which can make it hard to identify. 

Common symptoms include

  • A fatty hump between the shoulders, commonly and insensitively called a “buffalo hump” 
  • High blood pressure 
  • Muscle weakness 
  • Progressive weight gain
  • Skin thinning 
  • Facial flushing 
  • Pink or purple stretch marks on the skin 
  • Weight gain in the face, referred to as “moon face” 
  • Hair loss 
  • Slow wound healing 
  • Acne

Symptoms for men and women can often differ. Women should look out for

  • Thick, dark hair on the face and body, a condition is called hirsutism
  • Periods that are irregular or that stop

Symptoms men with Cushing syndrome may experience

  • Lower sex drive
  • Reduced fertility
  • Problems getting an erection

Why can Cushing’s syndrome make you look pregnant? 

“Cushing’s syndrome can cause an individual to appear pregnant due to accumulation of abdominal fat secondary to the raised cortisol levels,” says Jade. “This causes Central obesity and leads to a rounded, protruding abdomen which can appear pregnant.” 

While this often passes as ‘normal’ weight gain, this fat depository is discernible by its firmness, more similar to a bloated or pregnant abdomen, than one with a larger fat layer. 

How to cure Cushing’s Syndrome

You can recover from Cushing’s syndrome, by “addressing the underlying causes,” says Jade. 

Depending on your individual circumstances, that could either involve “tumour resection or ceasing corticosteroid medication.” 

“The sooner treatment starts, the better the chances for recovery,” writes the Mayo Clinic. 

Read one woman’s personal experience with Cushing’s syndrome, here.

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By Charlotte designer Charlotte Blakeney’s journey to motherhood

Charlotte Blakeney is the brains behind one of Australia’s most beloved cult jewellery brands, By Charlotte. But despite the growing momentum and resounding success of her business, the designer struggled with an entirely different challenge on the sidelines. 

Today is World Fertility Day. For some people, it’s just another Thursday, but for others, it’s a day filled with painful and bittersweet meaning. Australian jewellery designer, Charlotte Blakeney is all too familiar with the challenges attached to fertility. While all it takes for some people to conceive is a bottle of Tempranillo and a little bit of inhibition, not everyone’s experience is so simple.  

Blakeney’s journey to motherhood was anything but straightforward, costing her and her partner six years, ten rounds of IVF, and three devastating miscarriages. Her experience, representative of so many women’s, was an emotional roller coaster that tested her resilience and strength in more ways than one, cycling between hope, relief, disappointment and grief. 

Now, Blakeney is sharing her biggest learnings from her fertility struggles, encouraging women everywhere to take ownership of their reproductive health.

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Spending her twenties and thirties cultivating her career and travelling the world, the call of motherhood was only a distant hum for Blakeney, who was intently focused on her career as a makeup artist, and later growing her new jewellery business, By Charlotte. But, without a care for her career ambitions, Blakeney’s biological clock kept ticking, becoming increasingly impatient as the makeup artist-turned-jewellery designer’s thirties came to a close. 

“I was a makeup artist for 20 years and I was travelling the world, living this gypsy kind of lifestyle where my feet were on the ground very often,” Blakeney says, adding that she didn’t meet her Partner, Ryan, until she was 36.  

“One day I went to a gynaecologist and she was like, ‘Charlotte, you’re 40, do you want to have kids?’” she explains, recalling the sage advice of her doctor that immediately caused her to take her fertility seriously. She was told conceiving a baby at her age would likely be impossible without intervention, kickstarting her journey with IVF. 

And what an arduous, brutal journey it was. Alongside her commitment to ten rounds of gruelling hormone treatments, egg retrievals and implantations, Blakeney sought out all kinds of alternative medicine, from detox cleanses to healers and Chinese medicine.

Finally, finding solace in the support of a spiritual healer, Michael Trembath, Blakeney entered her tenth (and final) round of IVF with a totally new outlook. 

“[Trembath] got me on the bed and he said, ‘Do you love your body?’ And I was like, ‘No because it’s not doing what I want it to do’,” Blakeney says, recalling how the spiritual healer told her she desperately needed to start loving her body and her womb again if she wanted to fall pregnant. 

“He sent me home with positive affirmations, and I had to say them every night,” she says. “It was just an awakening for me because I hadn’t had any love for my body for such a long time. And I was really depressed and sad.”

In the wake of Blakeney’s ninth failed round of IVF, she had begun to feel totally hopeless, recalling the overwhelming advice from her doctors, friends and family to concede defeat. “They told me on my last appointment, ‘You will do this, but honestly, it’s not going to work’,” says the mother of one. “It was the very last shot financially, emotionally and physically. We’d been trying for six years and I was not getting any younger.”

Blakeney’s story does have a happy ending, but not without years of heartache and disappointment. Whether through back-breaking perseverance, science, the power of manifestation, or maybe even luck, Blakeney and her partner’s dream of being parents was finally realised five years ago with the birth of their daughter, Estelle.  

Channelling hope for other women

The toll of Blakeney’s fertility struggle extended far beyond her body, impacting almost every area of her life, from placing strain on her mental health and her relationship with her partner to the financial cost of each round and treatment course. 

“We were on a high a little bit of a high and then in an extreme low, and that was a very dark time for Ryan and I when we would go through that,” Blakeney says. “But he was always my support, and he was my cheerleader the whole way.”

Rising from the ashes of her own arduous journey, Blakeney found herself taking on the role of cheerleader for other women going through a similar experience. By Charlotte’s beautiful pieces have become a staple in many people’s jewellery collections, caching one’s eye with their radiant simplicity. But each delicate gemstone and design is laced with meaning, embodying her personal belief in the power of manifestation and positive affirmations.

“The point when I started putting mantras on my jewellery was when I started seeing Michael because I knew how amazing the mantras were and they really worked,” explains Blakeney. “Potentially it could change someone else’s mindset and really help them in their day-to-day life with whatever they’re feeling and whatever they’re doing.”

Speaking to Blakeney, she beams with positivity, hopefulness and patience, qualities that I am sure held her head up throughout the many arduous IVF rounds her body endured. As someone who yearns to experience motherhood one day, I can empathise deeply with Blakeney’s story. 

While each woman’s fertility and journey to motherhood is laced with its own complexities, Blakeney is an advocate for being properly educated on your body’s health and egg count, as well as understanding the unavoidable biological impact of delaying conception. 

“I would just say to women, don’t ignore the signs, don’t hold on to a relationship that’s not working,” she says urging women to be proactive in their choices throughout their twenties and thirties to arm themselves with the best possible chance of conception. “Just live your life and if you want to have kids, make that happen.”

As for Blakeney, the drowning disappointment and physical exhaustion that came with her fertility struggles were entirely worth it. 

“I just love living my life through [Estelle’s] eyes, I think it’s almost been like a rebirth for me as a person,” she says. “She’s made me extremely patient, I just I stop and smell the roses. I just feel complete.”

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The one question that could harm the chronically ill

Those dealing with a chronic illness have to go to great lengths to be heard, but their symptoms are often dismissed and not believed, says Hannah Vanderheide.

‘Have you tried meditation?’

If there was a single question that I would permanently retire from conversations with strangers, it would be this one (noting that meditation is pretty much interchangeable with any popular wellness therapy in the zeitgeist).

I’m tired of hearing it because, well, it could kill me. More specifically, accepting the implied assertion, that it’s my lifestyle choices keeping me sick rather than a glitch in my genetics, could very well kill me.

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Sound dramatic? Maybe it is, but not by much.

Recently, after experiencing a range of unsettling symptoms, I wondered if I was overreacting. I wondered if I was just ‘overdoing it’, if I should reassess my diet, or maybe I just needed to up my meditation practice because we know how bad stress can be on the body, right? And while I wondered all of these things, Stephanie Aston was dying.

On Friday, September 1st this year, New Zealand woman Stephanie Aston died tragically due to complications from Ehlers Danlos Syndrome (EDS), a chronic, and life-threatening disease that was misdiagnosed as a mental illness, and repeatedly dismissed by the doctors she relied on for survival.

She was 33 years old – the same age as me.

Indifference towards women’s pain and illness is so rampant it crosses socio-economic lines. Recently, women in the public eye have been bravely sharing their experiences, from Bella Hadid revealing her 15-year ‘invisible’ battle to get her Lyme Disease treated, and Bindi Irwin sharing her struggle with undiagnosed endometriosis, having been repeatedly dismissed by doctors.  

Michelle Irving, chronic illness mentor, and the Founder and CEO of Career and Chronic Illness says that medical misogyny is deeply embedded in our culture.

“Being dismissed and not believed is so prevalent that I would be hard-pressed to think of a client who hadn’t had this experience – and most people have had it so often that it feels normal,” she says.

“Women are taught to suppress our thoughts, feelings and authentic power, and over-ride our bodies, all in the name of being polite and compliant.”

At this point, maybe you’re wondering what this has to do with strangers asking if chronically ill people have tried meditation/cutting out gluten/ taking ashwagandha upon learning of their illness, and fair enough too. What it comes down to, is our cultural attitude towards chronic or incurable illness. 

Unsolicited advice can feel a lot like being dismissed

“Unsolicited advice for people, especially women, living with chronic illness is as prevalent and pervasive as chronic illness itself,” says Irving, who asserts that even when people have the best intentions, what underpins their comments is the belief that there’s something sick people are missing that might just get them ‘well’.

“The reason people assume this is because we have a story of illness that normatively says – you get sick, you may get a bit sicker and then you get well. So, if you are not well yet, there must be something you’re not doing and that could cure you.”

The thing is, those of us staring down a lifelong battle with a mysterious illness are often very open to trying anything that might help.

I have two autoimmune diseases with unknown causes. They are, Graves’ disease and the rarer and much more serious, Addison’s disease.

Now, these diseases don’t play nicely together, and as a result, I recently had a thyroidectomy to gain some much-needed control over the more treatable of the two (Graves). Addison’s is a whole other beast, carrying with it the threat of an ‘adrenal crisis’ that can kill within hours, so when something feels wrong in my body, I don’t have the luxury of ignoring it in favour of renewing my meditation app subscription. 

“We would all love to be perfectly well,” says Irving, “and chronically ill people have often gone to greater lengths than anyone could ever imagine. So the assumption, which is often flippant, about something more we can ‚do‘ that will fix things is both discouraging and distressing.”

Worse than being dismissed, is not being believed

It’s easy to assume that the medical system exists in a vacuum, somehow immune to the popular narrative of wellness persisting outside of it.

But what sick people encounter in their day-to-day interactions, often follows them in from the waiting room of the specialist’s clinic.

“Sadly, the outcome of this is that even in the doctor’s office we will be questioning if what we share about our experience is ‘okay’ to express.

The traditional, masculine model of power will dismiss a woman (see long history of hysteria), and all that she says about her body and experience, reducing it to being some ‚feeling or thought‘ rather than an accurate, factual depiction of what is going on.”

There can be deadly consequences

This fundamental misunderstanding of the nature of chronic illness is at best, frustrating for the sick person, but at its worst, it can actually be life-threatening. 

It was medical misogyny that killed Stephanie Aston, not her EDS. And it’s something most chronically ill people will rail up against countless times in their interactions with our healthcare system.

It’s a barrier fed by our cultural tendency to dismiss women’s pain until it’s too late. A barrier that is slowly, tentatively being challenged, by more and more women coming forward with their stories, and by the Labour government’s establishment of the National Women’s Health Advisory Council in December last year.

The thing is, we don’t have time for this attitude to slowly die out because while we wait, women are dying. Young women, older women, women with complex but manageable conditions who deserve good care and basic respect.

Women like Stephanie Aston. Women like me. 

So, how can we navigate this?

Irving firmly believes that the vast majority of medical professionals genuinely want to help their patients, and as a patient advocate, she has developed a series of ‘golden rules’ she teaches her clients to use when experiencing challenging encounters with the medical system.

“The bottom line,” she says, “ is that it’s not up to the patient to prove we are unwell and telling the truth. It’s up to clinicians to understand we are reporting facts, we have vulnerability, and we need help.”

Two fundamental points she hopes every patient will remember, are that it’s okay for the clinician to be uncomfortable and that it’s not your job to take care of your doctor’s feelings.

“Your clinicians are your advisors, but you are the ultimate decision-maker. Yes, they may know a lot more about your condition and have more medical knowledge than you, but you are still the decision maker, even if your decision is to follow that medical advice,” she says.

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