Endometriosis is a chronic and often debilitating condition that affects an estimated 1 in 9 women and people assigned female at birth in Australia. Despite its prevalence, it remains notoriously underdiagnosed and misunderstood. One of the biggest challenges in identifying endometriosis is that its symptoms mimic those of other, more commonly diagnosed conditions. This overlap often leads to years of misdiagnoses, delayed treatment, and unnecessary suffering for those affected.
In this blog, we’ll explore the common misdiagnoses that can obscure endometriosis, why it happens, and how patients can advocate for themselves in the often confusing process of getting a correct diagnosis.
Why Is Endometriosis So Commonly Misdiagnosed?
Endometriosis occurs when tissue similar to the lining of the uterus grows outside of it, commonly affecting the ovaries, fallopian tubes, and pelvic lining. This can cause inflammation, pain, and scarring. However, because endometriosis manifests differently from person to person and doesn’t always correlate with visible abnormalities on scans or tests, it can easily be mistaken for other conditions.
Adding to the challenge is the fact that pelvic pain and menstrual irregularities are often minimised or normalised—both by patients and some medical professionals—leading to prolonged periods before further investigation is undertaken.
The Most Common Misdiagnoses of Endometriosis
Let’s look at the conditions that are frequently misdiagnosed in place of endometriosis, and why they’re so commonly confused.
1. Irritable Bowel Syndrome (IBS)
One of the most frequent misdiagnoses for endometriosis is IBS. The two share several overlapping symptoms, including:
- Abdominal pain
- Bloating
- Constipation and/or diarrhoea
- Nausea
Endometriosis lesions on or near the bowel can mimic IBS symptoms almost exactly. However, a key difference is that endometriosis-related bowel symptoms often worsen during menstruation, whereas IBS typically follows dietary or stress-related triggers. If treatment for IBS isn’t helping, especially when symptoms are cyclical, it could be a red flag for endometriosis.
2. Pelvic Inflammatory Disease (PID)
Pelvic pain and abnormal bleeding can lead doctors to suspect PID, an infection of the reproductive organs. While PID is caused by bacteria and is typically treated with antibiotics, endometriosis is not an infection and does not respond to this treatment. Persistent symptoms after antibiotics should prompt further investigation.
3. Ovarian Cysts or Polycystic Ovary Syndrome (PCOS)
Both PCOS and endometriosis can involve ovarian cysts, irregular periods, and pelvic discomfort. However, PCOS is more closely associated with hormonal imbalances, acne, weight gain, and excess hair growth—symptoms not typical of endometriosis.
Moreover, endometriomas (a type of cyst linked to endometriosis) can be mistaken for functional ovarian cysts on imaging. Ultrasounds may not distinguish them accurately, leading to confusion unless further testing or a laparoscopy is performed.
4. Urinary Tract Infections (UTIs)
Frequent urination, pelvic pressure, and pain during urination may lead to a UTI diagnosis. However, in some cases of endometriosis, especially when the bladder is involved, similar urinary symptoms can occur without infection. Recurrent UTI-like symptoms with no bacterial growth in urine tests should raise the possibility of endometriosis.
5. Fibromyalgia or Chronic Fatigue Syndrome
Chronic pain, fatigue, and poor sleep quality can result in a diagnosis of fibromyalgia or chronic fatigue syndrome. While these are valid and serious conditions, they may coexist with endometriosis or mask its symptoms. A full pelvic examination or gynecological consultation is often missed when pain is assumed to be muscular or systemic in origin.
6. Depression and Anxiety
Sadly, some patients are told their symptoms are “all in their head.” When medical tests come back normal, psychological explanations are sometimes suggested. While depression and anxiety can be real outcomes of living with chronic, undiagnosed pain, they are not causes of endometriosis. This misdiagnosis can be deeply harmful and delay appropriate treatment.
Why Diagnosis Takes So Long
Studies show it takes, on average, 6 to 10 years from the onset of symptoms for a person to receive an endometriosis diagnosis. Contributing factors include:
- Symptom Normalisation: Period pain is often minimised as “just part of being a woman.”
- Non-Specific Symptoms: Many signs of endometriosis, such as fatigue and bloating, are non-specific.
- Lack of Awareness: Both patients and some GPs may not consider endometriosis early in the diagnostic process.
- Diagnostic Limitations: Endometriosis cannot be definitively diagnosed through blood tests or imaging alone. A laparoscopy (a surgical procedure) remains the gold standard for diagnosis.
How to Advocate for Yourself
If you suspect you might have endometriosis, especially after receiving one or more of the misdiagnoses above, here are steps you can take:
- Track Your Symptoms
Keep a detailed journal of your symptoms, noting when they occur (especially in relation to your menstrual cycle), their severity, and any triggers or relief.
- Request a Referral
Ask your GP for a referral to a gynaecologist with experience in endometriosis. Not all specialists are equally knowledgeable about the condition.
- Ask the Right Questions
Don’t be afraid to ask whether endometriosis has been considered as a diagnosis. Bring up the cyclical nature of your symptoms, and highlight any failed treatments.
- Seek a Second Opinion
If you feel dismissed or unheard, you are well within your rights to seek a second (or third) opinion. Your pain is real and deserves to be taken seriously.
Final Thoughts
Endometriosis is a complex condition that continues to be under-recognised in clinical practice. The path to diagnosis is often winding and frustrating, marked by a string of misdiagnoses that can leave patients feeling helpless. But greater awareness—among both patients and practitioners—is changing that.
If you’ve been struggling with ongoing pelvic pain, heavy periods, digestive issues, or fatigue, and you’re not getting answers, consider that identifying endometriosis might be the key to understanding your symptoms. With the right support, a thorough medical evaluation, and persistent self-advocacy, you can move closer to relief and an accurate diagnosis.
