Fatigue. Brain fog. Itchy skin. For many women, these symptoms are written off as a part of life — blamed on stress, age, or perimenopause. But for thousands of Australian women, these subtle signs could point to a serious and often overlooked condition: Primary Biliary Cholangitis (PBC).
PBC is a rare, chronic autoimmune liver condition that is becoming increasingly prevalent in Australia and disproportionately affects women. But many women with PBC report being initially dismissed or misdiagnosed by healthcare professionals — delaying appropriate management and impacting their quality of life. PBC is a slowly progressive condition that, if it goes undiagnosed and untreated, can lead to significant liver disease and potentially liver failure.
Below, we share a few things you need to know about PBC — including what to ask your doctor if you suspect something isn’t right— so you can take back control of your health.
What is PBC?
Primary Biliary Cholangitis is a chronic autoimmune liver disease that causes the small bile ducts — the network of small tubes that carry bile in the liver — to get inflamed and eventually blocked. While it is a rare condition, affecting nearly 5,000 people in Australia, it is on the rise, with around 90 percent of Australians diagnosed with PBC being women, often between the ages of 40 and 60.
The early signs can be vague. So, it’s essential to keep an eye out for the most common symptoms of PBC, which include:
- Persistent fatigue, even after rest. Unlike typical tiredness, fatigue is an overwhelming, debilitating, and sustained sense of exhaustion that decreases the ability to function and carry out daily activities.
- Dry eyes and mouth (sometimes diagnosed as Sjögren’s syndrome)
- Itchy skin (especially on the palms and soles)
- Discomfort in the upper right abdomen
- Yellowing of the skin or eyes (jaundice) in advanced stages
- High cholesterol or low bone density without obvious cause
Because these symptoms can mimic other conditions, PBC is often missed. If you’re experiencing any combination of these signs — especially if they’re unexplained or persistent — it’s worth discussing with your GP.
Medical Gender Bias in Australia
In Australia, women can spend many years seeking answers for complicated medical issues before landing on a diagnosis, often being told they’re simply tired, run down, or experiencing early menopause. Sound familiar? You’re not alone. A recent national survey revealed two-thirds of women have faced gender bias in healthcare, with many describing being dismissed or not taken seriously — especially when dealing with chronic or hard-to-pin-down symptoms.
If you suspect you could be living with a liver condition such as PBC, it’s important to be proactive in your healthcare journey and have a conversation with your healthcare professional. Here are some questions to guide your conversation:
- Do I need a liver function test?
- What are the next steps if my test results are abnormal?
- Should I be referred to a liver specialist (hepatologist)?
Take control of your health
While there is currently no cure for PBC, early diagnosis and treatment can slow disease progression, prevent complications such as cirrhosis and improve quality of life. Medications, lifestyle changes and regular monitoring can also make a significant difference.
Professor Simone Strasser, Chair of the Clinical and Scientific Committee at the Liver Foundation, emphasised the importance of early recognition and informed care.
“Awareness is the first step in managing a liver condition like PBC. When people understand how this disease affects the liver and what to expect, they’re in a stronger position to make informed, confident decisions about their care. Recognising the signs early, starting treatment promptly and staying engaged with their care can all help to keep people well throughout their PBC journey.”
Professor Simone Strasser, Chair of the Clinical and Scientific Committee at the Liver Foundation
By understanding your condition and taking an active role in your care, you empower yourself to make informed decisions that support your health. Remember, you’re not alone —support is available from liver specialists, patient organisations, and peer networks, ready to help you every step of the way.
For more information about PBC, please visit the Liver Foundation website.
This article is intended for informational purposes only and does not constitute medical advice. Always consult your healthcare professional if you have any concerns or before making any changes to your health or wellness routine.
Ipsen is a global biopharmaceutical company, improving patients’ lives through research and innovation in oncology, rare disease and neuroscience.
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