Understanding adenomyosis.
A comprehensive, evidence-based guide to adenomyosis for Australian women. From diagnosis through treatment, daily management, and fertility, with current research citations throughout.
What is adenomyosis?
Adenomyosis is a condition where tissue similar to the uterine lining (endometrium) grows into the muscular wall of the uterus (myometrium). This misplaced tissue continues to respond to hormonal signals each cycle, thickening, breaking down, and bleeding within the muscle wall. This causes the uterus to enlarge, become boggy and tender, and leads to heavy, painful periods.
Adenomyosis has historically been considered a condition of older, parous women (those who have given birth), but improved imaging has revealed that it affects women of all ages, including adolescents and nulliparous women. It is increasingly recognised as a significant cause of pelvic pain, heavy menstrual bleeding, and infertility.
Chapron et al., Hum Reprod Update, 2020; Struble et al., Fertil Steril, 2016
How does it develop?
Junctional zone invasion
The junctional zone (JZ) is the inner layer of the myometrium, directly adjacent to the endometrium. In adenomyosis, endometrial glands and stroma invade through this boundary into the myometrium. The junctional zone thickens and becomes disrupted, which can be measured on MRI. A JZ thickness of 12mm or more is considered diagnostic. The mechanism of invasion is thought to involve tissue injury and repair (TIAR) theory, where micro-trauma from uterine contractions causes endometrial infiltration.
Leyendecker et al., Hum Reprod Update, 2009; Gordts et al., Hum Reprod, 2008
MUSA criteria
The Morphological Uterus Sonographic Assessment (MUSA) was developed to standardise the ultrasound description and classification of adenomyosis. It provides a structured approach to reporting ultrasound features, including myometrial cysts, hyperechoic islands, fan-shaped shadowing, asymmetric myometrial thickening, and translesional vascularity. MUSA aims to improve consistency in diagnosis across different sonographers and centres.
Van den Bosch et al., Ultrasound Obstet Gynecol, 2015; MUSA Consensus Group, 2022
Relationship to endometriosis
Adenomyosis and endometriosis frequently coexist. Depending on the study, 20-80% of women with adenomyosis also have endometriosis. Both conditions involve endometrial-like tissue in abnormal locations, share common pathogenic mechanisms (inflammation, oestrogen dependence, altered immunity), and produce overlapping symptoms. However, they are distinct conditions: endometriosis involves tissue outside the uterus, while adenomyosis involves tissue within the uterine wall.
Chapron et al., Hum Reprod Update, 2020; Leyendecker et al., Best Pract Res Clin Obstet Gynaecol, 2006
Other contributing factors
Risk factors include prior uterine surgery (caesarean section, curettage, myomectomy), which may disrupt the junctional zone. Multiparity has traditionally been associated with adenomyosis, though this likely reflects a detection bias from the era when diagnosis required hysterectomy. Oestrogen exposure, chronic inflammation, and altered local immune responses are all implicated. The exact aetiology remains incompletely understood.
Benagiano et al., Hum Reprod Update, 2014; Vercellini et al., Best Pract Res Clin Obstet Gynaecol, 2006
Prevalence
Naftalin et al., Ultrasound Obstet Gynecol, 2012
Defined by meta-analysis; Vercellini et al., 2014
Chapron et al., Hum Reprod Update, 2020
Chapron et al., Hum Reprod Update, 2020
Types of adenomyosis
Adenomyosis is broadly divided into diffuse and focal forms, though there is considerable overlap. Unlike endometriosis, which has established staging systems (rASRM), there is no universally accepted classification system for adenomyosis. This is a major evidence gap that affects clinical communication, research comparability, and treatment standardisation.
Chapron et al., Hum Reprod Update, 2020; Van den Bosch et al., Ultrasound Obstet Gynecol, 2015
Diffuse adenomyosis
The most common form. Endometrial tissue is scattered throughout the myometrium, causing generalised thickening of the uterine wall. The entire uterus may be enlarged and boggy. On ultrasound, the myometrium appears heterogeneous with poorly defined areas of abnormality. On MRI, diffuse junctional zone thickening is seen. This form is associated with heavy menstrual bleeding and a diffusely tender uterus.
Chapron et al., Hum Reprod Update, 2020; Exacoustos et al., Fertil Steril, 2011
Focal adenomyosis (adenomyoma)
Localised collections of adenomyotic tissue forming a distinct mass within the myometrium. An adenomyoma can resemble a fibroid on imaging but has different characteristics: ill-defined borders, no capsule, and may contain small cystic areas. Focal adenomyosis is more amenable to surgical excision (adenomyomectomy) than diffuse disease, which is relevant for women wanting to preserve fertility.
Gordts et al., Hum Reprod, 2008; Osada H, Reprod Med Biol, 2011
Classification attempts
MUSA classification
The MUSA group proposed a structured ultrasound reporting system that describes location (anterior, posterior, fundal), extent (focal or diffuse), and specific features (myometrial cysts, hyperechoic islands, asymmetry). While an important step, it is a descriptive framework rather than a clinical staging system that predicts outcomes.
Van den Bosch et al., Ultrasound Obstet Gynecol, 2015
MRI-based classification
MRI can distinguish between diffuse and focal disease and measure junctional zone thickness. Some researchers have proposed grading systems based on JZ thickness and extent of myometrial involvement. However, no MRI classification has been validated against clinical outcomes (pain, bleeding, fertility) in a way that would change management.
Bazot and Darai, J Minim Invasive Gynecol, 2013
Signs and symptoms
Adenomyosis presents with a classic triad of heavy menstrual bleeding (HMB), dysmenorrhoea (painful periods), and an enlarged, tender uterus. However, symptoms vary widely. Some women have severe symptoms, while others, possibly a third, are asymptomatic and the condition is discovered incidentally on imaging.
The classic triad
The most common symptom, reported in 50-70% of women with adenomyosis. Menstrual flow is heavy and prolonged, often lasting 7 or more days. Women may pass large clots, soak through protection frequently, and develop iron-deficiency anaemia. The enlarged, boggy uterus does not contract effectively to stop bleeding.
Severe, cramping period pain that often begins before bleeding starts and continues throughout menstruation. The pain is caused by the endometrial tissue within the muscle wall responding to hormonal changes, as well as increased uterine contractions. May worsen progressively over time.
The uterus becomes diffusely enlarged (typically 2-3 times normal size) and tender on examination. Unlike fibroids, which produce discrete lumps, adenomyosis causes a uniformly boggy uterus. This can contribute to pelvic pressure, bloating, and urinary frequency.
Struble et al., Fertil Steril, 2016; Chapron et al., Hum Reprod Update, 2020
Symptom prevalence
Overlap with endometriosis
The symptom overlap between adenomyosis and endometriosis is substantial. Both cause dysmenorrhoea, chronic pelvic pain, dyspareunia, and subfertility. When they coexist (which occurs in 20-80% of cases), it can be difficult to determine which condition is driving which symptoms. This has implications for treatment planning, as treating one condition while the other remains unaddressed may result in persistent symptoms.
Key distinguishing features of adenomyosis include heavy menstrual bleeding (more prominent than in endometriosis alone), diffuse uterine enlargement, and a boggy, tender uterus on examination. Endometriosis-specific symptoms include deep pelvic pain outside of menstruation, bowel and bladder symptoms, and pain patterns linked to specific lesion locations.
Chapron et al., Hum Reprod Update, 2020; Leyendecker et al., Best Pract Res Clin Obstet Gynaecol, 2006
Broader impact
Chronic heavy menstrual bleeding frequently leads to iron-deficiency anaemia, causing fatigue, breathlessness, difficulty concentrating, and reduced exercise tolerance. Many women normalise these symptoms, attributing them to "being tired," when they reflect a treatable medical condition. Ferritin levels should be checked in all women with heavy bleeding.
Munro et al., Int J Gynaecol Obstet, 2011
Adenomyosis significantly affects quality of life through pain, heavy bleeding, fatigue, and the disruption these cause to work, relationships, and daily activities. Quality-of-life scores are comparable to other chronic gynaecological conditions. The emotional burden of managing unpredictable, heavy periods should not be underestimated.
Li et al., Eur J Obstet Gynecol Reprod Biol, 2020
Living with chronic pain and heavy bleeding takes a psychological toll. Women with adenomyosis report higher rates of anxiety and depression, though dedicated mental health research in adenomyosis (separate from endometriosis) is limited. The uncertainty of diagnosis and limited treatment options add to the psychological burden.
Getting diagnosed
Adenomyosis was historically diagnosed only on hysterectomy specimens, meaning it was confirmed after the uterus had already been removed. The development of high-quality transvaginal ultrasound (TVUS) and MRI has transformed diagnosis, allowing non-invasive identification in women who have not had surgery. However, diagnostic accuracy depends heavily on operator expertise and awareness of the condition.
Chapron et al., Hum Reprod Update, 2020; Dueholm et al., Hum Reprod Update, 2015
Imaging methods
Transvaginal ultrasound (TVUS)
TVUS is the first-line imaging modality for adenomyosis. In expert hands, its accuracy is comparable to MRI. A systematic review found sensitivity of 72-89% and specificity of 65-98%, depending on operator expertise. Key ultrasound features include asymmetric myometrial thickening, myometrial cysts, hyperechoic islands or buds, fan-shaped shadowing, irregular JZ, and increased vascularity.
Dueholm et al., Hum Reprod Update, 2015; Van den Bosch et al., Ultrasound Obstet Gynecol, 2015
MRI
MRI provides excellent soft-tissue contrast and can measure junctional zone thickness precisely. A JZ thickness of 12mm or more is the most widely used diagnostic criterion. MRI is particularly useful for differentiating adenomyosis from fibroids, mapping the extent of focal disease before surgical planning, and in cases where ultrasound findings are equivocal. Sensitivity ranges from 77-93%, specificity from 67-99%.
Bazot and Darai, J Minim Invasive Gynecol, 2013; Champaneria et al., Hum Reprod Update, 2010
Key ultrasound features (MUSA)
Small, round anechoic areas within the myometrium. Highly specific for adenomyosis when present.
Bright echogenic spots within the myometrium, representing endometrial glands.
Acoustic shadows radiating from the endometrium into the myometrium.
One wall of the myometrium is significantly thicker than the other.
The boundary between endometrium and myometrium appears indistinct or irregular.
Blood vessels crossing from the endometrium into areas of adenomyosis.
Van den Bosch et al., Ultrasound Obstet Gynecol, 2015
Diagnostic challenges
Unlike some other conditions, there is no blood test or biomarker for adenomyosis. CA-125 may be mildly elevated but is non-specific. Research into novel biomarkers is ongoing but none have reached clinical use.
Ultrasound accuracy for adenomyosis varies significantly with operator expertise. A general ultrasound without specific attention to adenomyosis features may miss the diagnosis. Request a sonographer experienced in gynaecological conditions.
Adenomyomas can mimic fibroids on imaging. Differentiating them matters because management differs. MRI is helpful when ultrasound is uncertain. The presence of both conditions simultaneously (which is common) adds complexity.
Chapron et al., Hum Reprod Update, 2020; Dueholm et al., 2015
Treatment options
Treatment for adenomyosis aims to manage symptoms (heavy bleeding, pain) and, where relevant, preserve fertility. The right approach depends on the severity of symptoms, whether fertility is a current goal, and the type and extent of disease (diffuse vs focal). Hysterectomy remains the only definitive cure, but multiple uterine-sparing options are available.
Chapron et al., Hum Reprod Update, 2020; Struble et al., Fertil Steril, 2016
The levonorgestrel-releasing intrauterine system is considered the first-line medical treatment for adenomyosis. It delivers progesterone directly to the uterus, thinning the endometrium, reducing menstrual flow, and suppressing adenomyotic tissue. Studies report significant reductions in bleeding and pain, with improvement in uterine volume over 12-36 months. It lasts up to 5 years and provides contraception simultaneously.
Sheng et al., Fertil Steril, 2009; Bragheto et al., Hum Reprod, 2007
Create a temporary, reversible menopause-like state by suppressing oestrogen. Highly effective for reducing uterine size, bleeding, and pain. Limited to 6-12 months due to bone density effects, with "add-back" HRT to mitigate menopausal symptoms. Commonly used as pre-treatment before fertility treatment or surgery to reduce disease burden.
Pepas et al., Cochrane Database Syst Rev, 2014
An oral progestin specifically approved for endometriosis in Australia that also shows efficacy for adenomyosis. Studies report reduced pain, bleeding, and uterine volume. It is taken continuously and suppresses ovulation. Side effects may include irregular bleeding, mood changes, and reduced libido. Evidence for adenomyosis is growing but less extensive than for endometriosis.
Osuga et al., Fertil Steril, 2017; Hirata et al., J Obstet Gynaecol Res, 2018
Continuous COCP use (skipping the sugar pills) can reduce menstrual bleeding and pain by thinning the endometrium and suppressing hormonal cycling. Less effective than the Mirena for adenomyosis specifically, but may be preferred by women who do not want an intrauterine device. Provides endometrial protection and contraception.
Mansouri et al., J Minim Invasive Gynecol, 2014
Living with adenomyosis
Day-to-day management of adenomyosis involves symptom control, practical planning for heavy periods, and addressing the physical and emotional toll of chronic symptoms. Building the right support network and developing coping strategies makes a real difference.
Take NSAIDs (ibuprofen, naproxen) before pain starts. If you know your period is coming, begin 1-2 days before expected bleeding. This is more effective than waiting until pain is severe.
Heat packs, hot water bottles, or wearable heat patches on the lower abdomen provide significant pain relief. A randomised trial found continuous low-level topical heat as effective as ibuprofen for period pain (Akin MD et al, Obstetrics & Gynecology 2001;97:343-9, PMID 11239634). Portable options allow use at work.
Transcutaneous electrical nerve stimulation interrupts pain signals and may reduce the need for medication. Portable TENS units are available over the counter and can be used during daily activities.
Chronic pelvic pain often leads to pelvic floor tension, which becomes a secondary pain source. A pelvic floor physiotherapist can assess and treat this, improving pain, bladder function, and discomfort during sex.
Myths vs evidence
Adenomyosis is less well known than endometriosis, but misconceptions still affect how women experience the condition and how it is managed. Tap each card to see the evidence.
Additional misconceptions
Misconception: “If you have adenomyosis, you can’t have a natural birth.”
Having adenomyosis does not automatically require a caesarean birth. However, adenomyosis is associated with higher obstetric risks, and some women with adenomyomectomy scars may need careful assessment regarding the suitability of vaginal birth, similar to women with previous myomectomy scars. Discuss your specific situation with your obstetrician.
Misconception: “Heavy periods are just something women have to deal with.”
Heavy menstrual bleeding is a medical symptom that deserves investigation and treatment. Normalising heavy periods delays diagnosis of adenomyosis (and other causes), allows anaemia to develop, and reduces quality of life unnecessarily. Effective treatments exist, and no one should have to structure their life around unmanaged bleeding.
Munro et al., Int J Gynaecol Obstet, 2011
Adenomyosis and fertility
If fertility is part of your plan
This section covers how adenomyosis can affect fertility and the options available. If fertility is not currently relevant to you, feel free to skip ahead to the next section.
Adenomyosis and pregnancy
If pregnancy is relevant to you
This section covers pregnancy-related considerations for women with adenomyosis. Skip to the next section if this is not currently relevant.
Adenomyosis after birth
If postpartum is relevant to you
This section covers postpartum considerations for women with adenomyosis. 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
Surgical options
Fertility planning
Pregnancy and postpartum
The Australian context
Adenomyosis does not have the same level of recognition, funding, or dedicated guidelines as endometriosis in Australia. There is no national action plan, no dedicated patient organisation, and limited public awareness. Despite this, Australian researchers have contributed significantly to the understanding of adenomyosis, particularly in the fertility context.
Prevalence data
Population-level prevalence data for adenomyosis in Australia are limited. The most cited figure comes from a meta-analysis finding a pooled prevalence of approximately 19% in subfertile women across international studies, with Australian fertility clinic data contributing to this estimate. In unselected populations (including asymptomatic women), prevalence is estimated at 10-20%, though this varies with the imaging modality and diagnostic criteria used.
Vercellini et al., Hum Reprod Update, 2014; Naftalin et al., Ultrasound Obstet Gynecol, 2012
Medicare and PBS coverage
Ultrasound (MBS item 55080): Pelvic ultrasound is Medicare-rebated when requested by a GP or specialist. However, the quality of adenomyosis assessment depends on the operator’s expertise. Not all sonographers report adenomyosis features systematically. Ask for a sonographer with gynaecological imaging experience.
MRI: Medicare-rebated when requested by a specialist with appropriate clinical indication. May require prior approval in some circumstances. Useful for confirming diagnosis and surgical planning.
Mirena IUS: PBS-listed for heavy menstrual bleeding (Authority Required). The device itself is PBS-subsidised. Insertion may be performed by a GP or specialist. Out-of-pocket costs for insertion vary.
Dienogest (Visanne): PBS-listed for endometriosis. When adenomyosis coexists with endometriosis, PBS access is available. For adenomyosis alone, PBS listing may not apply, and patients may bear the full cost. This is a funding gap.
GnRH agonists: PBS-listed with Authority Required for specific indications including endometriosis and pre-surgical uterine shrinkage. Access for adenomyosis-specific indications varies.
Surgery: Hysterectomy and adenomyomectomy are covered in public hospitals (waiting lists apply). Private surgery involves out-of-pocket costs even with private health insurance. Public hospital wait times vary by state.
MBS Online, 2024; PBS Schedule, 2024
Research and guidelines
Unlike endometriosis (which has the ESHRE guideline and the Australian National Action Plan) and PCOS (which has the Monash-led international guideline), adenomyosis has no dedicated clinical guideline from any major Australian or international medical body. This means clinicians rely on expert consensus, extrapolation from endometriosis guidelines, and individual experience.
Australian researchers have contributed significantly to the field, particularly in the areas of adenomyosis and IVF outcomes. The UNSW, University of Sydney, and University of Adelaide have active research programmes in this area.
Chapron et al., Hum Reprod Update, 2020; RANZCOG clinical guidance
Support and information
Provides evidence-based consumer information on adenomyosis, including symptoms, diagnosis, and treatment options. Free health line (1800 JEAN HAILES) for questions. One of the few reliable Australian consumer sources specifically addressing adenomyosis.
While primarily focused on endometriosis, provides resources relevant to adenomyosis given the frequent co-occurrence. Their specialist directory may help identify clinicians experienced in both conditions.
Provides resources for pelvic pain conditions including adenomyosis. Their education programmes cover chronic pelvic pain management and the role of multidisciplinary care.
The Royal Australian and New Zealand College of Obstetricians and Gynaecologists provides clinical guidance for practitioners, though no dedicated adenomyosis guideline exists. Their specialist directory can help locate gynaecologists with relevant expertise.
Evidence gaps and advocacy needs
Adenomyosis does not have a national action plan equivalent to the endometriosis plan. Given the prevalence and impact, dedicated policy attention is needed. Advocacy for inclusion in the broader endometriosis action plan, or a standalone plan, would improve research funding and clinical standards.
The absence of a universally accepted classification system for adenomyosis hampers research, clinical communication, and treatment standardisation. International efforts (MUSA, MRI-based systems) are underway but not yet finalised.
Most adenomyosis treatment evidence comes from small, non-randomised studies. High-quality RCTs comparing treatment options are urgently needed, particularly for fertility-preserving approaches and pre-IVF treatments.
Unlike endometriosis (Endometriosis Australia, QENDO, EndoActive) and PCOS (PCOS Australian Alliance), there is no dedicated Australian patient organisation for adenomyosis. Women with adenomyosis often access support through endometriosis networks.
Many GPs and general sonographers are less familiar with adenomyosis features than with fibroids or endometriosis. Education and awareness-raising among primary care clinicians and imaging professionals would improve diagnostic rates.
There is virtually no published research on the postpartum course of adenomyosis, management strategies, or long-term outcomes. This is a basic evidence gap that needs addressing through prospective studies.
Chapron et al., Hum Reprod Update, 2020; Van den Bosch et al., 2015
Meta-analysis pooled estimate; Vercellini et al., 2014
Current state, as of 2026
Current state, as of 2026
herjourney.com.au · Health education, not medical advice
Evidence: Cochrane, PubMed, RANZCOG, MUSA · 2006-2026 · © Her Journey 2026