For many women, severe period pain is dismissed as something to simply push through. But for millions around the world, that pain is a sign of a chronic inflammatory condition that often goes undiagnosed for years.
Endometriosis affects around 1 in 7 Australian women and those assigned female at birth during their lifetime. Yet despite how common it is, the condition remains widely misunderstood and frequently overlooked.
Research suggests that it takes an average of six to eight years to receive a diagnosis in Australia, leaving many women navigating debilitating symptoms without answers.
This Endometriosis Awareness Month, we’re breaking down what endometriosis is, the symptoms to look for, how diagnosis works and the steps women can take to advocate for their health.
What Is Endometriosis?
Endometriosis is a chronic inflammatory disease where tissue similar to the lining of the uterus (called the endometrium) grows outside the uterus.
These growths can occur on:
- The ovaries
- Fallopian tubes
- The pelvic lining
- The bowel or bladder
- The outer surface of the uterus
- In rare cases, other organs
Like the uterine lining, this tissue responds to hormonal changes during the menstrual cycle. However, because it sits outside the uterus, it cannot leave the body during menstruation, which can lead to inflammation, scar tissue and organs sticking together (adhesions).
According to Australian gynaecologist and endometriosis specialist Dr Susan Evans, the condition is far more complex than simply painful periods.
“Endometriosis is a whole-body inflammatory disease. While pelvic pain is common, the condition can affect the bowel, bladder, nervous system and immune system,” Dr Evans explains.
Over time, this inflammation can lead to chronic pain, fatigue, ovarian cysts and fertility challenges.
Common Symptoms of Endometriosis
Endometriosis symptoms vary significantly between individuals, which is one reason the condition can take years to diagnose.
Common symptoms include:
- Severe period pain that interferes with work, school or daily activities.
- Chronic pelvic pain that occurs outside of menstruation.
- Pain during or after sex
- Pain with bowel movements or urination
- Heavy or irregular periods
- Bloating and digestive symptoms often referred to as “endo belly”
- Extreme fatigue
- Difficulty falling pregnant
According to Dr Anusch Yazdani, many patients are told their symptoms are normal when they are not.
“Painful periods that stop you from living your life are not normal. When pain interferes with school, work or relationships, it deserves investigation.”
Importantly, the severity of symptoms does not always match the severity of the disease. Some women with minimal visible endometriosis experience intense pain, while others with extensive disease may have fewer symptoms.
Why Endometriosis Can Take Years to Diagnose
One of the most frustrating realities for women with endometriosis is the time it takes to receive a diagnosis.
Studies show women often wait six to eight years between first experiencing symptoms and receiving confirmation of the condition.
Several factors contribute to this delay:
- Period pain being normalised
- Symptoms overlapping with conditions like IBS
- Lack of awareness among patients and clinicians
- Difficulty detecting the disease through imaging
A standard pelvic ultrasound may not detect endometriosis, particularly in its earlier stages.
Specialist sonographers trained in identifying the subtle signs of the condition may detect some forms of deep endometriosis in advanced stages, but imaging alone cannot confirm the diagnosis.
How Endometriosis Is Diagnosed
Doctors may suspect endometriosis based on:
- A patient’s symptoms
- Medical history
- Pelvic examination
- Imaging such as ultrasound or MRI
However, the only definitive way to diagnose endometriosis is through a surgical procedure called a laparoscopy performed by a gynaecologist.
This procedure allows surgeons to visually examine the pelvic organs and test tissue samples.
According to Endometriosis Australia, many women receive confirmation of the disease during this procedure.
What Is a Laparoscopy?
A laparoscopy is a minimally invasive surgery performed under general anaesthetic.
During the procedure:
- A small incision is made near the belly button
- A thin camera called a laparoscope is inserted into the abdomen
- The surgeon examines the pelvic organs for signs of endometriosis
- Tissue samples may be taken for biopsy
In many cases, surgeons can remove visible endometriosis lesions during the same procedure with two additional incisions, which may help reduce symptoms.
Most patients go home the same day or the following day and recovery typically involves:
- A few days of rest
- Mild abdominal discomfort
- Gradual return to normal activities over several weeks
Your specialist will discuss the potential risks and recovery expectations before surgery.
What To Do If You Suspect Endometriosis
If you recognise any of the symptoms outlined, the most important step is advocating for your health and not stopping until you have answers.
You may consider:
Tracking your symptoms
Record pain levels, menstrual cycle timing, fatigue and digestive symptoms.
Speaking to your GP
Ask your GP for a referral to a gynaecologist experienced in endometriosis. If you have private health insurance, you can contact your private health care provider for a list of gynaecologists that do not charge a gap fee for an initial consultation, so that you can ask your GP for a referral to one of them.
If your GP is resistant in providing you with a referral to see a specialist gynaecologist then it is time to seek out a new GP.
Australia now also has several government-funded endometriosis and pelvic pain clinics designed to support diagnosis and treatment. You can
locate one using this map provided by the Australian Government.
Seeking specialist imaging and next steps
Certain ultrasound clinics specialise in detecting endometriosis and your gynaecologist may request imaging after your consultation before suggesting further steps which may include a laparoscopy.
Accessing resources and community support
Endometriosis Australia is the leading national charity dedicated to improving awareness, education, and research around endometriosis in Australia. The organisation works to support the more than one million Australians affected by the condition by advocating for better diagnosis, treatment and healthcare policies. Importantly it also funds research, provides helpful educational resources for patients and access to support groups which you can find
here.
Speaking to an accredited Nutritionist or Naturopath to manage inflammation
While nutrition cannot cure endometriosis, certain dietary approaches may support inflammation management and overall wellbeing. Because triggers vary between individuals, working with
a nutritionist experienced in women’s health can help develop a personalised approach.
In Summary
Endometriosis is a complex, inflammatory condition that affects millions of women, yet many still wait years before receiving a diagnosis. Greater awareness, education and advocacy are essential to improving outcomes for women living with the condition. If something about your cycle or pain feels wrong, trust your body and seek support. Severe pain is not something you should have to live with- you deserve better.
If you enjoyed this article you may appreciate these other women’s health articles- Recognising endometriosis and the simple lifestyle and nutrition tips that can help you manage it or Harmonising training with your menstrual cycle: a holistic approach and Getting to know the phases of your menstrual cycle and your guide to cyclical living.
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Sources:
Australian Institute of Health and Welfare – Endometriosis in Australia
Endometriosis Australia
Royal Australian College of General Practitioners
World Health Organization – Endometriosis Fact Sheet
Australian Department of Health – National Action Plan for Endometriosis