Understanding endometriosis.
A comprehensive, evidence-based guide to endometriosis for Australian women. From diagnosis through treatment, daily management, and fertility, with current research citations throughout.
What is endometriosis?
Endometriosis is a chronic inflammatory condition where tissue similar to the lining of the uterus (the endometrium) grows outside the uterus. These lesions most commonly appear on the ovaries, fallopian tubes, bowel, bladder, and the peritoneum (the lining of the pelvic cavity), though they can occur in other parts of the body.
Like the uterine lining, this tissue responds to hormonal changes during the menstrual cycle. It thickens, breaks down, and bleeds with each cycle. Because this tissue has no way to leave the body, it causes inflammation, scarring, adhesions, and sometimes severe pain.
ESHRE Guideline: Endometriosis, 2022; Zondervan et al., N Engl J Med, 2020
How does it develop?
The most widely cited theory, originally proposed by Sampson in 1927. During menstruation, some endometrial tissue flows backward through the fallopian tubes into the pelvic cavity, where it implants and grows. While retrograde menstruation occurs in up to 90% of menstruating women, only a subset develop endometriosis, suggesting other factors are involved.
Sampson JA, Am J Obstet Gynecol, 1927; Halme et al., Obstet Gynecol, 1984
Prevalence
AIHW, Endometriosis in Australia, 2023
AIHW National Health Survey, 2022
Armour et al., BMC Womens Health, 2019
Taylor et al., N Engl J Med, 2021
Types of endometriosis
Endometriosis is classified by the location and depth of lesions. A single person can have more than one type simultaneously. The type does not always correlate with symptom severity: some women with superficial disease experience intense pain, while others with deep infiltrating disease may have few symptoms.
ESHRE Guideline: Endometriosis, 2022
Superficial peritoneal endometriosis
The most common form. Endometrial-like tissue grows in small, flat patches (lesions) on the surface of the peritoneum and pelvic organs. Lesions can appear as red, black, brown, white, or clear spots. Despite being classified as "superficial," this type can still cause significant pain, as the peritoneum is rich in nerve fibres.
Revised ASRM classification of endometriosis, Fertil Steril, 2012
Ovarian endometriomas
Sometimes called "chocolate cysts" because of their dark brown contents (old, accumulated blood). These are cysts that form on or within the ovaries. They range in size from a few millimetres to over 10 centimetres. Endometriomas are found in 17-44% of women with endometriosis and may affect ovarian reserve and egg quality.
Vercellini et al., Hum Reprod Update, 2014; Muzii et al., Hum Reprod, 2014
Deep infiltrating endometriosis (DIE)
Lesions that penetrate more than 5mm below the peritoneal surface, often invading the bowel wall, bladder, ureters, or uterosacral ligaments. DIE accounts for roughly 20% of endometriosis cases and tends to cause the most severe symptoms, including deep pelvic pain, bowel and urinary symptoms, and pain during sex.
Koninckx et al., Fertil Steril, 2012; Bazot et al., Radiology, 2004
Adenomyosis
A related condition where endometrial-like tissue grows into the muscular wall of the uterus (myometrium) rather than outside it. Approximately 20-35% of women with endometriosis also have adenomyosis. It causes heavy, painful periods and an enlarged, tender uterus. While technically a separate diagnosis, it frequently coexists with endometriosis.
Chapron et al., Hum Reprod Update, 2020; Leyendecker et al., Best Pract Res Clin Obstet Gynaecol, 2006
Revised ASRM classification, Fertil Steril, 1997; Johnson et al., Hum Reprod, 2017
Pain and symptoms
Endometriosis presents with a wide range of symptoms, and severity varies greatly between individuals. Some women with extensive disease experience minimal pain, while others with small amounts of disease report debilitating symptoms. Pain is influenced by the location of lesions, the degree of nerve involvement, and individual pain processing.
Common pain types
Severe period pain that may not respond to standard painkillers. Often begins before bleeding starts and lasts throughout menstruation.
Sharp or aching pain around mid-cycle, often worse on one side. More intense than the mild "mittelschmerz" that some women experience.
Pain during or after sexual intercourse, particularly with deep penetration. Often described as a deep, aching pain.
Pain during bowel movements (dyschezia) or urination (dysuria), often worse during menstruation. May include bloating, nausea, or altered bowel habits.
Ongoing pelvic pain that persists outside of menstruation. May be constant or intermittent, and can become sensitised over time.
Referred pain to the lower back, hips, and legs due to nerve involvement or inflammation affecting the sciatic nerve or pelvic nerves.
ESHRE Guideline, 2022; Agarwal et al., J Endometriosis Pelvic Pain Disord, 2019
Symptom prevalence
Broader impact
Chronic fatigue is reported by roughly two-thirds of women with endometriosis. It is likely driven by chronic inflammation, disrupted sleep from pain, and the constant physiological effort of managing a chronic condition. Fatigue often persists even on "good" pain days.
Ramin-Wright et al., Hum Reprod, 2018
Women with endometriosis have significantly higher rates of anxiety (29-73%) and depression (14-47%) compared to the general population. Diagnostic delay, symptom dismissal, and the chronic nature of the condition all contribute. Access to psychological support is a documented gap in care.
Laganà et al., J Psychosom Obstet Gynaecol, 2017; van Barneveld et al., Arch Womens Ment Health, 2020
The estimated lifetime cost per person with endometriosis in Australia exceeds $30,000. This includes direct healthcare costs, out-of-pocket expenses, lost productivity, and reduced hours. On a national scale, endometriosis costs the Australian economy an estimated $9.7 billion per year.
Armour et al., PLoS ONE, 2019; Australian Government, National Action Plan for Endometriosis, 2018
Endometriosis affects intimate relationships (pain during sex, reduced libido, fertility concerns), friendships (cancelling plans), and careers (absenteeism, presenteeism, reduced career progression). Australian research found that 81% of women reported endometriosis had negatively affected their education or career.
Armour et al., BMC Womens Health, 2019; Moradi et al., BMC Womens Health, 2014
Getting diagnosed
Diagnosis of endometriosis remains one of the biggest challenges women face. In Australia, the average time from symptom onset to diagnosis is 7-12 years. During that time, many women see multiple doctors, are told their pain is “normal,” and receive inadequate treatment.
Armour et al., BMC Womens Health, 2019; Hudelist et al., Fertil Steril, 2012
Diagnostic methods
Laparoscopy
Historically considered the “gold standard” for definitive diagnosis. A small camera is inserted through the abdomen to visualise and biopsy endometrial lesions. While it provides definitive histological confirmation, it is an invasive surgical procedure requiring general anaesthesia. Current guidelines increasingly emphasise that surgery should not be required solely for diagnosis.
ESHRE Guideline, 2022; RANZCOG, 2021
Specialist ultrasound
Transvaginal ultrasound performed by a trained sonographer or sonologist can now detect deep infiltrating endometriosis and endometriomas with high accuracy. A systematic review found sensitivity of 79% and specificity of 94% for deep disease. The key is that the operator must have specific training in endometriosis detection. A “normal” ultrasound done by a non-specialist does not rule out endometriosis.
Nisenblat et al., Cochrane Database Syst Rev, 2016; Guerriero et al., Hum Reprod Update, 2018
MRI
Magnetic resonance imaging is particularly useful for mapping deep infiltrating endometriosis prior to surgery. It provides detailed images of the bowel, bladder, and other structures. Sensitivity ranges from 77-93% for DIE. MRI is often used as a complementary tool alongside ultrasound for surgical planning.
Bazot et al., Radiology, 2004; Guerriero et al., Hum Reprod Update, 2018
Clinical assessment
A thorough clinical history combined with physical examination can provide a high index of suspicion. The ESHRE guidelines now support a “clinical diagnosis” of endometriosis based on symptoms, examination findings, and imaging, without requiring laparoscopic confirmation. This is important because it means treatment can begin without surgery.
ESHRE Guideline, 2022; NICE Guideline NG73, 2017
Diagnostic delay
Armour et al., BMC Womens Health, 2019
Moradi et al., BMC Womens Health, 2014
Armour et al., 2019
Young et al., Aust NZ J Obstet Gynaecol, 2019
Treatment options
There is currently no cure for endometriosis. Treatment aims to manage symptoms, reduce disease progression, and improve quality of life. The right approach depends on symptom type and severity, whether fertility is a priority, your response to previous treatments, and your preferences. Most women use a combination of approaches.
ESHRE Guideline, 2022; RANZCOG, 2021
Suppresses ovulation and reduces endometrial growth. Can be taken cyclically or continuously (skipping the sugar pills) to reduce or eliminate periods. First-line treatment for many women. Continuous use tends to be more effective for pain control.
Vercellini et al., Fertil Steril, 2018
Includes norethisterone, medroxyprogesterone acetate, and dienogest. Suppress oestrogen-driven growth of endometrial tissue. Dienogest (Visanne) is specifically approved for endometriosis in Australia and has good evidence for pain reduction. Side effects may include mood changes, bloating, and irregular bleeding.
Strowitzki et al., J Clin Endocrinol Metab, 2010; TGA, 2023
Releases progesterone locally into the uterus, thinning the endometrial lining and reducing menstrual flow. Effective for pain and heavy bleeding. Particularly useful for adenomyosis. Lasts up to five years. Can be used post-surgically to reduce recurrence.
Vercellini et al., Hum Reprod, 2003; ESHRE Guideline, 2022
Create a temporary, reversible menopause-like state by suppressing oestrogen. Highly effective for pain but limited to 6-12 months due to bone density effects. "Add-back" HRT is used to mitigate menopausal side effects. Newer GnRH antagonists (elagolix, relugolix) offer dose-dependent oestrogen suppression.
Brown et al., Cochrane Database Syst Rev, 2010; Taylor et al., N Engl J Med, 2017
Living with endometriosis
Managing endometriosis day to day involves more than medical treatment. Building the right team, tracking your symptoms, and making practical adjustments all contribute to better outcomes and quality of life.
Endometriosis is best managed with a multidisciplinary team. You do not need all of these professionals at once, but having access to the right people at the right time makes a significant difference.
Your first point of contact and ongoing coordinator. A GP who understands endometriosis will take your symptoms seriously, refer appropriately, and manage prescriptions. Ask whether they have experience with endometriosis.
For diagnosis, surgical management, and specialist hormonal treatment. Seek a gynaecologist with specific endometriosis expertise, ideally one who performs excision surgery. AGES-accredited surgeons are a good starting point.
Addresses pelvic floor tension, pain during sex, bowel and bladder symptoms, and movement. An important part of pain management that is often underutilised.
Supports mental health, pain coping strategies, and the emotional burden of chronic illness. Look for someone experienced in chronic pain or women's health.
Can help with anti-inflammatory dietary strategies, gut health, and managing the bloating and bowel symptoms ("endo belly") that many women experience.
For complex or centrally sensitised pain that does not respond to standard management. Can coordinate multimodal pain approaches.
Myths vs evidence
Endometriosis is surrounded by misconceptions that contribute to diagnostic delay, inadequate treatment, and emotional distress. Tap each card to see the evidence.
Additional misconceptions
Misconception: “If the ultrasound is normal, you don’t have endo.”
Superficial peritoneal endometriosis (the most common type) is typically not visible on ultrasound. A normal ultrasound does not rule out endometriosis. Specialist ultrasound can detect deep disease and endometriomas, but even specialist imaging has limitations for superficial lesions.
Nisenblat et al., Cochrane Database Syst Rev, 2016
Misconception: “Pain levels reflect disease severity.”
There is a poor correlation between the extent of disease seen at surgery and the level of pain experienced. A woman with Stage I disease may have excruciating pain due to nerve involvement, while a woman with Stage IV may have minimal symptoms. The rASRM staging system does not predict pain or fertility outcomes reliably.
Vercellini et al., Hum Reprod, 2007; Johnson et al., Hum Reprod, 2017
Misconception: “You just need to relax and manage stress.”
While stress can exacerbate pain perception (as with any chronic pain condition), endometriosis is a physical disease driven by hormonal, immune, and genetic factors. Telling someone with endometriosis to “just relax” is as unhelpful as telling someone with a broken arm to think positive thoughts. Stress management can be part of a comprehensive plan, but it is not a treatment for the disease itself.
Endometriosis and fertility
If fertility is part of your plan
This section covers how endometriosis can affect fertility and the options available. If fertility is not currently relevant to you, feel free to skip ahead to the next section.
Endometriosis and pregnancy
If pregnancy is relevant to you
This section covers pregnancy-related considerations for women with endometriosis. Skip to the next section if this is not currently relevant.
Endometriosis after birth
If postpartum is relevant to you
This section covers symptom return and management after birth. Skip ahead if this is not currently relevant.
Questions for your doctor
Tick off questions as you discuss them. You can screenshot or print this list to bring to your appointment.
Getting diagnosed
Managing symptoms
Considering surgery
Fertility planning
Pregnancy and postpartum
The Australian context
Australia was one of the first countries in the world to develop a National Action Plan for Endometriosis, reflecting growing recognition of the condition’s impact. However, gaps remain in access, funding, and awareness.
National Action Plan for Endometriosis
Launched in 2018, the Australian Government’s National Action Plan for Endometriosis was developed in partnership with consumers and clinicians. It focuses on three pillars: awareness and education, clinical management and care, and research.
Key outcomes include funding for endometriosis clinical guidelines, GP education modules through the Royal Australian College of General Practitioners (RACGP), establishment of specialist endometriosis and pelvic pain clinics, and $9.5 million allocated to endometriosis research from 2018-2023.
Australian Government Department of Health, National Action Plan for Endometriosis, 2018
Medicare and PBS coverage
GP consultations: Bulk-billed or with Medicare rebate. A GP chronic condition management plan (which replaced Chronic Disease Management Plans in July 2025) allows up to five allied health visits per calendar year, shared across all allied health, with a Medicare rebate. These can cover psychology and physiotherapy.
Specialist consultations: Medicare rebate available for gynaecologist and fertility specialist appointments. Gap fees vary significantly, and out-of-pocket costs can be substantial, particularly for fertility treatment.
Imaging: Medicare rebates cover pelvic ultrasound and MRI when referred by a specialist. Specialist endometriosis ultrasound may not be available in all locations.
Surgery: Covered in public hospitals (waiting lists apply). Private surgery involves significant out-of-pocket costs even with private health insurance. Public hospital wait times for non-urgent gynaecological surgery can exceed 12 months in some states.
PBS medications: Dienogest (Visanne) is PBS-listed for endometriosis. GnRH agonists are PBS-listed with specific criteria. The combined pill is not PBS-subsidised when prescribed for endometriosis (it is relatively low-cost regardless).
MBS Online, 2024; PBS Schedule, 2024
Specialist centres and services
Several Australian hospitals and clinics have established dedicated endometriosis and pelvic pain services. Access varies by state and region, with rural and regional women facing the greatest barriers.
Royal Hospital for Women (Randwick), Westmead Hospital Endometriosis Centre, Royal North Shore Hospital. Multiple private specialists in Sydney.
Royal Women's Hospital Melbourne, Epworth Freemasons (Endometriosis Surgery Centre of Excellence), Monash Health. Specialist clinics across Melbourne.
Royal Brisbane and Women's Hospital, Greenslopes Private Hospital, Queensland Endometriosis Centre. QENDO provides state-based support.
Royal Adelaide Hospital, Flinders Medical Centre. Endometriosis SA provides local advocacy and support.
King Edward Memorial Hospital, St John of God Subiaco. EndoActive WA provides local support and awareness campaigns.
Limited specialist endometriosis services. Canberra Endometriosis Centre (ACT). Rural and remote women may need to travel interstate for specialist surgery.
Endometriosis Australia directory; RANZCOG specialist listings; hospital websites, accessed 2025
Support organisations
National organisation providing education, support programs, specialist directories, and advocacy. Runs the annual EndoMarch campaign and provides school-based education (EndoEd) to increase awareness among young women. Maintains a specialist directory and resources library.
State-based organisation providing peer support groups, heat packs program, educational events, and advocacy. Active in both metropolitan and regional Queensland. Runs a support line and online community.
Provides evidence-based education about pelvic pain conditions including endometriosis, vulvodynia, and chronic pelvic pain. Offers resources for patients, clinicians, and schools. Their PPEP Talk program delivers pelvic pain education in schools.
Sydney-based organisation running events, advocacy campaigns, and support groups. Focus on workplace awareness and policy change. Active on social media with community engagement.
National women's health organisation with comprehensive endometriosis information, translated resources, and a free health line (1800 JEAN HAILES). Provides evidence-based consumer information.
Economic burden
Deloitte Access Economics, 2019
Armour et al., PLoS ONE, 2019
Nnoaham et al., Fertil Steril, 2011
Deloitte Access Economics report for Endometriosis Australia, 2019
Policy gaps and advocacy priorities
Women outside major cities face significant barriers to specialist care. Telehealth has improved access to consultations, but surgical expertise remains concentrated in metropolitan centres.
Despite RACGP education modules, many GPs lack confidence in recognising and managing endometriosis. Continued professional development and integration into medical school curricula are needed.
Very limited research exists on endometriosis prevalence and experience among Indigenous Australian women. Culturally safe endometriosis care pathways are needed.
Information in languages other than English is limited. Cultural barriers to discussing menstrual health and pain can compound diagnostic delay.
No national framework for menstrual or endometriosis leave exists, though some employers and state governments are beginning to offer it. Victoria became the first state to offer paid menstrual and reproductive health leave for public sector workers in 2024.
While the National Action Plan allocated $9.5 million for research, this remains modest relative to the disease burden. Endometriosis research funding per affected person is significantly lower than for comparable chronic conditions.
Australian Government National Action Plan for Endometriosis, 2018; Senate Inquiry into Endometriosis, 2022; Deloitte Access Economics, 2019
herjourney.com.au · Health education, not medical advice
Evidence: Cochrane, PubMed, RANZCOG, ESHRE · 2019-2026 · © Her Journey 2026