Endometriosis is a chronic condition in which tissue like the endometrium (the lining of the uterus) grows outside the uterus. This misplaced tissue can be found on the ovaries, fallopian tubes, the outer surface of the uterus, and even other pelvic organs. Just like the normal uterine lining, this tissue responds to hormonal changes during the menstrual cycle, which can result in pain, inflammation, and the formation of adhesions (bands of fibrous, or scar, tissue).
Endometriosis is common in Australia. It is estimated that about 1 in 7 women have endometriosis. Despite its prevalence, many women remain undiagnosed for years due to the spectrum of symptoms and the misconception that severe menstrual pain is normal.
Recognising Endometriosis
- Pelvic Pain: Often severe and commonly associated with menstruation, but it can also be present at other times. This pain may radiate to the lower back, down the legs, or even cause pain while defecating.
- Heavy Menstrual Bleeding: Experiencing unusually heavy periods or bleeding between periods.
- Pain During Intercourse: Discomfort or pain during or after sexual intercourse.
- Bowel and Urinary Problems: Pain during bowel movements or when urinating, particularly around menstruation.
- Other Symptoms: Fatigue, bloating, nausea, and even back pain may be experienced.
Diagnosing Endometriosis
Diagnosing endometriosis can be complex because its symptoms often overlap with other conditions. The gold standard for a definitive diagnosis is a laparoscopy, also known as “keyhole surgery”, a surgical procedure that allows direct visualisation and, if necessary, biopsy of the endometrial tissue. Experienced clinicians can often make a clinical diagnosis based on a detailed medical history and symptom discussion.
The diagnostic process may involve
- Medical history and symptom discussion: A detailed conversation about menstrual patterns, pain, and other symptoms.
- Pelvic examination: A physical examination to detect adnexal (refers to the ovaries or fallopian tubes) masses (lumps near the uterus) or tenderness.
- Imaging tests: Ultrasound scans or magnetic resonance imaging (MRI) may be used to identify cysts (endometriomas) associated with the condition, although smaller lesions might be hard to see.
- Laparoscopy: As noted, this surgical procedure is considered the most definitive method of diagnosing endometriosis. It allows doctors to see and sometimes remove the problematic tissue.
Treatment options
Pain Management
Hormonal Therapies
- Combined Oral Contraceptive Pill (COCP): Helps regulate hormones and reduce menstrual flow and pain.
- Progestin Therapy: Contraceptive medication that does not include oestrogen, like the “mini pill”.
- Gonadotropin-Releasing Hormone (GnRH): Temporarily induce a menopausal state to reduce pain.
- Intrauterine Device (IUD): Hormone-releasing IUDs can help reduce endometrial growth and manage symptoms.
Surgical Intervention
- Laparoscopy: Not only a diagnostic tool but also a treatment option to remove or destroy endometrial lesions.
- Other Surgeries: In severe cases, a hysterectomy (removal of the uterus) may be considered yet does not guarantee that endometriosis will not recur.
“Women in outback communities battle both the isolation and stigma associated with endometriosis, underscoring the urgent need for improved education and access to care in these areas.”
Infertility and Endometriosis
Endometriosis is a recognised contributor to infertility. The condition causes inflammation and adhesions (scar tissue) that can change the pelvic anatomy, altering egg quality and impairing implantation. According to research discussed by Endometriosis Australia, 30–50% of women with endometriosis experience difficulties with fertility. It is important for women experiencing fertility issues alongside other symptoms of endometriosis to seek a comprehensive evaluation.
Challenges with diagnosis and treatment
One of the most significant challenges in managing endometriosis is the delay in diagnosis. This delay can be attributed to a lack of awareness, the normalisation of menstrual pain, and the need for surgical procedures to confirm the condition. On average, there is a seven-year gap between the onset of symptoms and a definitive diagnosis.
Early laparoscopy in the first few years may be negative as the endometrial deposits can be microscopic initially, but still cause profound symptoms. Moreover, the effectiveness of treatments can vary greatly between individuals. What works for one person might not work for another, and even after treatment – including surgical intervention – symptoms may recur. This variability makes it essential for treatment plans to be tailored to the individual’s needs, with ongoing management and follow-up care
Endometriosis in rural Australia
Women living in rural and remote areas of Australia face additional hurdles when it comes to diagnosing and treating endometriosis:
- Access to Specialists: Rural regions often have fewer gynaecologists and endometriosis specialists, meaning longer wait times and the need to travel long distances for consultations and treatments
- Education and Awareness: Lower levels of public education about endometriosis in rural communities can delay the recognition of symptoms and subsequent diagnosis.
- Support Services: Limited access to support groups and specialised care can lead to feelings of isolation and increased challenges in managing the condition.
Myth busting: Separating fact from fiction
- Severe period pain is normal
- Experiencing painful pelvic pain means you have endometriosisExperiencing painful pelvic pain means you have endometriosis
- Endometriosis always leads to infertility
- A normal pelvic exam rules out endometriosis
- While some discomfort during menstruation is common, debilitating pain is not normal and should be investigated.
- While endometriosis is commonly linked to painful periods, it is not the only cause of menstrual pain. The severity and range of symptoms vary —some may experience pain to the legs or back, while others notice discomfort during bowel movements or intercourse. It is important to consult a doctor.
- Although endometriosis can affect fertility by causing inflammation and adhesions that alter pelvic anatomy, many women with the condition conceive naturally.
- A pelvic exam may reveal signs such as adnexal masses or tenderness, but their absence does not rule out the condition
Endometriosis is a complex and often misunderstood condition that can have a profound impact on a woman’s quality of life. Recognising the varied symptoms—from pelvic pain and heavy bleeding to pain that radiates down the legs or occurs during defecation—is essential. While the gold standard for diagnosis is a laparoscopy, experienced clinicians can often make a clinical diagnosis based on detailed medical history and symptom assessment.
With a range of treatment options available—from pain management and hormonal therapies (such as COCPs and hormone-releasing IUDs) to surgical interventions—tailored care is essential. However, challenges such as delayed diagnosis, variable treatment responses, and limited access to specialist care in rural areas highlight the need for improved education and support. Myth busting is also critical to ensure women understand that severe period pain is not normal, and that early intervention can make a significant difference.
Increased awareness and understanding of endometriosis will not only help reduce the stigma and isolation experienced by many women but will also lead to earlier diagnoses and better overall management of the condition.
References
- ABC News. (2024, July 27). Women with endometriosis in outback fight isolation and stigma. Retrieved from
- Australian Government Department of Health. (2024, March 7). What we’re doing about endometriosis. Retrieved from
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Australian Institute of Health and Welfare. (2024, March 25). Endometriosis in Australia: Summary. Retrieved from
https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/summary
- Australian Institute of Health and Welfare. (2019, August). Public Health Evidence 247 – Endometriosis. Retrieved from
- Endometriosis Australia. (2025). Endometriosis Australia. Retrieved from
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Endometriosis Australia. (2025). Fertility and Pregnancy. Retrieved from
- Endometriosis Australia. (2025). Endo Myth Busting. Retrieved from
- (2023, July). Endometriosis. Retrieved from
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The Womens’. (n.d.). Treating Endometriosis. Retrieved from
https://www.thewomens.org.au/health-information/periods/endometriosis/treating-endometriosis
