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- Herausgeber: John Wiley & Sons
- Kategorie: Ratgeber
- Sprache: Englisch
Your trusted guide for understanding and managing endometriosis
One in seven Australian women live with endometriosis. If you or your loved ones are among them, then you know just how hard it can be to get the answers you need. The Australian Guide to Living Well with Endometriosis aims to help you recognise, manage and treat this life-altering condition. Drawing on the latest medical research as well as the real-world experiences of diverse Aussie women, it delivers science-backed information and expert advice. With this book, you’ll feel more empowered to navigate all the challenges that come with endometriosis.
Endometriosis can affect body image, sex life, fertility and family planning. The daily pain experienced by many women can even stop them from fully participating in the life they choose to lead. The Australian Guide to Living Well with Endometriosis is a handbook for finding the strategies, the tools and the hope you need for navigating and managing your care. Inside, you’ll learn how to find your voice as a patient and advocate. From getting diagnosed to getting treatment, you’ll feel more confident in taking charge of your health and speaking up for yourself.
What’s more, you’ll discover you are not alone. You’ll read inclusive, deeply personal stories from real Australians — from well-known figures like Kayla Itsines and Emma Watkins to everyday women in education, business, politics and more.
- Understand your symptoms and the info you need to share with your doctor.
- Learn how to navigate the complex healthcare system and discover how different medical professionals can help you.
- Understand treatment options like medications, surgeries and physio.
- Discover how endo can affect your fertility and what’s involved in IVF.
- Get lifestyle tips and tools (including diet, nutrition and exercise) that can help in managing flare-ups.
- Read expert advice from GPs, gynaecologists, world-class researchers and other women’s health professionals.
The Australian Guide to Living Well with Endometriosis is a must-read resource for managing your physical health and overall wellbeing — so you can truly live the life you choose when it comes to home, school, family, sports, work and beyond.
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Veröffentlichungsjahr: 2025
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Table of Contents
Cover
Table of Contents
Title Page
Copyright
Disclaimer
Foreword
About the author
Introduction
PART I: Tune in
Understanding endo
CHAPTER 1: What is endometriosis?
Are heavy, painful periods normal?
Symptoms to look out for
Genetics and gastrointestinal issues
What about adenomyosis?
Does endometriosis have different stages or levels?
Endo myths and facts
What causes endometriosis?
What might be going on in the body?
CHAPTER 2: Understanding the pain and fatigue
Understanding pelvic pain
Unwelcome friends
Am I more likely to have other chronic conditions as well as endo?
PART II: Track, Tell, Test
Getting a diagnosis
CHAPTER 3: How do I find a name for my pain?
Endo is more common than you think
The journey to get tested and diagnosed
Track your symptom impact
Heavy menstrual bleeding
CHAPTER 4: What kind of doctor do you need?
What symptoms do GPs look for in endometriosis?
Creating your care team and plan
Professor Danielle Mazza AM on how a GP diagnoses endo
A referral to the gynaecologist
Dr Tarana Lucky on what to expect at the gyno
CHAPTER 5: What to expect from examinations and tests
Rachel Andrew on preparing for a physical exam
Pelvic examination
Medical imaging
Ultrasound
Imagendo
Associate Professor Magdalena Simonis AM on symptoms and testing
Dr Tarana Lucky on tests at the gyno
PART III: Treat
Considering your options
CHAPTER 6: What are my treatment options?
Over‐the‐counter medications
Analgesics
Non‐steroidal anti‐inflammatories
Palmitoylethanolamide (PEA)
Prescription medications
Oxycodone
Neuromodulators
Hormonal treatments
Why are they prescribing the pill?
Hormone treatment options
Traditional and alternative options
CHAPTER 7: Considering surgery
Laparoscopic surgery
Hysterectomy
CHAPTER 8: Fertility and infertility
How does endo impact fertility?
What to expect from a fertility specialist
Fertility treatment options
Starting the IVF process
Professor Luk Rombauts on how endo impacts fertility
Dr Samantha Mooney on treatment options
Dealing with the tough stuff
CHAPTER 9: Multidisciplinary care
Biopsychosocial approaches
Stephanie O'Kane on supporting patients' varied needs
Allied health
Akaiti James on her approach to holistic care
Rachel Andrew with the lowdown on physio below the belt
Acupuncture for endo
Osteopathy for endometriosis
Dr Lisa Gadd on different endo therapies
Psychological support
Physical activity and exercise
Mind‐body practices
Pacing activities
Stress management
Sleep hygiene
Emotional support
Integrative health
Body image
CHAPTER 10: Relationships
Dads as endo supporters
Endometriosis and its impact on intimate relationships
Educational resources
Couples counselling
Endometriosis and its impact on family planning
Sex and intimacy
Intimacy beyond sexuality
Daily life and responsibilities
Social isolation
Support networks
PART IV: Try it out
Holistic lifestyle and self‐care
CHAPTER 11: Lifestyle and self‐care
‘Nothing about us without us’
CHAPTER 12: Diet and nutrition
Are you what you eat?
The daily dozen
Adapting your diet to what works for you
Low‐FODMAP diet
Anti‐inflammatory diet
Omega‐3 fatty acids
To soy or not to soy?
Gut microbiota and endometriosis
Antioxidants and gut health
Benefits of fermented foods
Dr Eliza Colgrave on balancing diet and exercise
Heal. Nourish. Support. Balance.
CHAPTER 13: Exercise for endo
Rolling with life's curveballs: Lisa's story
Dr Lisa Gadd's endometriosis stretches to attain ‘living health’
Protecting with abdominal exercises
CHAPTER 14: Rest and recuperation
Listening to what your body needs: Ellie's story
Fatigue and Spoon Theory
Cold therapy
Heat therapy
PART V: Take it on
Know your rights
CHAPTER 15: School and work
Endo girls
Teachers need to step up
LongSTEPPP
School education
Endo gendernomics
About Bloody Time
Endometriosis and the workplace
CHAPTER 16: Medical misogyny
How the medical world excludes and ignores women+
End Gender Bias survey
GP gender pay gap
Bias in research funding
CHAPTER 17: Intersectionality and inclusion in care
Aboriginal and Torres Strait Islanders
Dr Maryam Moradi on increasing awareness of endometriosis
LGBTQIA+
PART VI: Take action
Global efforts
CHAPTER 18: What's the future of endo research and policy?
National Endometriosis Clinical Scientific Trials Registry
Professor Jason Abbott on the need for multi‐disciplinary support for people with endometriosis
Parliamentary Friends of Endometriosis Awareness
National Action Plan on Endometriosis
Endometriosis and pelvic pain clinics
Global endo efforts
The gift of philanthropy
Acknowledgements
Resources
References
Index
End User License Agreement
Guide
Cover
Table of Contents
Title Page
Copyright
Disclaimer
The Australian Guide to Living Well with Endometriosis
Foreword
About the author
Introduction
Begin Reading
Acknowledgements
Resources
References
Index
End User License Agreement
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‘I wish this book had existed when I was younger, lost in the maze of pain and uncertainty, searching for answers. It might have been the guide I needed while navigating the long road to diagnosis and understanding my own body. May this book provide some guidance and support on your endo journey.’
—Ellie Angel Mobbs
‘A useful, usable companion for all those with endometriosis or caring for someone with endometriosis.’
—Professor Jason Abbott, Professor of Obstetrics and Gynaecology, UNSW Sydney Australia
‘A much‐needed evidence‐based, accessible book for those living with endometriosis and challenged by fertility.’
—Professor Luk Rombauts, Past President of the World Endometriosis Society
‘The impact of endometriosis on the lives and wellbeing of women is profound. Despite this, many aspects of the disease are poorly understood, and high quality treatments are lacking. Maree Davenport shines a light on this complex disease with informed input from a wide range of stakeholders. Essential reading for anyone wanting to understand more about living with endometriosis.’
—Professor Peter AW Rogers, Professor of Women’s Health Research, University of Melbourne; Director of Research, Royal Women’s Hospital; Founding Director and current Board Member, Jean Hailes Foundation.
‘The only way we can affect improved Endometriosis care is by brave people sharing their stories. Congratulations to Maree Davenport and her contributors for explaining the challenges, providing context, understanding and advocating for change in this book that will positively impact many people's lives.’
—Professor Louise Hull
‘This book will be life changing for women of all ages. It will help end the silent suffering that's been the “women's lot” for generations.’
—A/Prof Magdalena Simonis AM
First published 2025 by John Wiley & Sons Australia, Ltd
© John Wiley & Sons Australia, Ltd 2025
All rights reserved, including rights for text and data mining and training of artificial intelligence technologies or similar technologies. Except as permitted under the Australian Copyright Act 1968 (for example, a fair dealing for the purposes of study, research, criticism or review) no part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise. Advice on how to obtain permission to reuse material from this title is available at http://www.wiley.com/go/permissions.
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Disclaimer
While I've made every effort to ensure that the information in this book is accurate and informative, it does not take the place of professional or medical advice.
Do not use this information:
to diagnose, treat, cure or prevent any disease
for therapeutic purposes
as a substitute for the advice of a health professional.
To my daughter Brianna, niece Alicia and all the incredible endo warriors, I am deeply grateful for your unwavering resilience, strength, persistence, patience, and courage in the face of daily challenges.
This book is a labour of love, intended to serve as a guiding light through the lenses familiar to me — the healthcare system, gender equality, politics, policy, advocacy and empowerment.
My sincere hope is that this book will help you live well with endometriosis and cultivate a community of compassion that recognises your individual needs.
I also aim to educate those providing care; encourage respectful collaboration with their patients; and better address this life‐altering, chronic and currently incurable condition.
This continues the legacy of the late Professor David Healy, and I dedicate this book to him, almost 30 years after he first lobbied me about a life‐defining, gendered disease called endometriosis.
Foreword
The Governor‐General of the Commonwealth of Australia Her Excellency the Honourable Ms Sam Mostyn AC.
For many years, it has been my privilege to work for equality for women. During that time, I have learned from so many women of the devastating pain and misunderstanding that accompanies endometriosis.
On the good news front, this dreadful, debilitating disease is now, more than ever before, the subject of open conversations, improved understanding and better‐funded research. In the last decade, more and more women have spoken up and spoken out about their experiences with this insidious disease. More and more women are breaking the silence and lighting the way for those who live with endometriosis.
And there are many of them. One million or more Australian women and girls live with endometriosis, many of them still burdened by the myths, silences and misrepresentations that have surrounded this disease for generations. I know so many of these women, young and old. The Australian Institute of Health and Welfare tells us that the number of women diagnosed by the age of 50 has risen to one in seven.
For many, a comprehensive diagnosis is often the answer to a question that has dogged their health and wellbeing for years. Especially when, on average, diagnosis takes 6.5 years — longer for women in regional and rural areas and in disadvantaged communities. Receiving a diagnosis after years of pain and suffering can be the beginning of a better life.
This book is part of that journey. It offers support and affirmation as well as practical insights and empirical, evidence‐based conclusions. It breaks new ground in sharing the game‐changing advances in endometriosis health, infertility and research. To the women who share their own experiences here with great courage and honesty, my heart goes out in gratitude. You represent so many of the women in my life who share your journey.
This book is an expression not only of medical rigour and bold advocacy but, fundamentally, of care. Care for the many who are suffering. Care for the networks of frontline workers and health professionals who themselves are giving constantly with outstretched hands and thoughtful counsel.
My hope is that in the years ahead, endometriosis will be less of a menace to health and happiness. Instead, it may become a cause to celebrate medical breakthroughs, our respect for women and the widening circles of care that encompass every woman and girl.
About the author
Maree Davenport has advocated for women+'s health for over 30 years. She was the youngest woman elected to the Parliament of Victoria at age 28 and the first to have a baby while serving. She was appointed as chair of the government's Health Policy Committee and Parliamentary Secretary for Health. Maree holds a Master of Leadership specialising in gender equality, diversity and inclusion. She also has tertiary qualifications in property, communications, risk (GIA) and governance (AICD), and is an accredited mediator (NMAS), specialising in workplace disputes and Gender Equality Action Plans.
She is passionate about endometriosis and a strong advocate. She is committed to reducing diagnostic delay; improving ultrasound and magnetic resonance imaging (MRI) access to avoid invasive surgery; preserving fertility; and empowering person‐centred, multidisciplinary health and self‐care.
She has shared the life‐defining challenges of endometriosis and adenomyosis through her daughter, Brianna, who developed symptoms at the age of eight. The challenges affect all facets of her life.
Brianna is committed to helping other endo warriors and as a nurse, working through COVID‐19 in Monash Health’s emergency department. She understands the challenges with fertility and pregnancy risk and is now a fertility nurse. She and her husband, Daniel, a paramedic, welcomed their son Oliver in August 2022.
Maree's niece Alicia was diagnosed with endometriosis after investigation of fertility issues, in 2023 and, after undergoing treatment, welcomed daughter Margot with her husband Nick in May 2024.
Maree Davenport was chief executive officer of an endometriosis charity for a year from March 2023. During that time, she elevated media coverage and government action, resulting in successful awareness campaigns leading to federal government funding and subsidies through Medicare. She previously served as chair on the Board and on the Federal Department of Health's Endometriosis Expert Advisory Group.
She is on the organising committee for the World Congress on Endometriosis (Sydney 2025), chair of the Patient Liaison Committee, and an organiser of the inaugural Endo Warrior community day.
She has three children and is ‘Nanree’ to three grandchildren. She lives in Melbourne with husband Marcus, and Zac and Rocky, their fur babies.
Introduction
Endo‐mee‐tree‐osis … the sound of it is something quite atrocious.
Endometriosis is hard to say and awful to live with.
Thank you for taking the time to read this book about living with a chronic, whole‐of‐body inflammatory disease, which is incurable; life‐defining; adversely impacts fertility, body image and sex lives; and, in general, involves pain that stops you from fully participating in the life you choose to lead.
Know this from the outset: women+ living with endometriosis are strong, resilient, organised and have an endurance well beyond the realms of normal capacity.
Imagine if men had life‐impacting pain for weeks at a time, found sex painful, pee and poo problematic, and constantly felt sick and tired. Governments, researchers and philanthropists would have invested in finding a cure for these symptoms decades ago.
If men walked in the impractical, uncomfortable shoes of the one in seven women+ diagnosed with endometriosis (endo) by their fiftieth birthday, and faced poor body image arising from bloating, they would understand why so many of these women+ are anxious and depressed.
In Australia, endo is as common as diabetes, affecting 14 per cent of girls and women+. The World Health Organization estimates the condition affects around 190 million reproductive‐age girls and women+ globally. It states: ‘Addressing endometriosis will empower those affected by it by supporting their human right to the highest standard of sexual and reproductive health, quality of life and overall well‐being.’
Women+ are at a disadvantage in a medical system designed by men, specifically for the Reference Man in 1974, a theoretical person who has ‘normal' characteristics. Meaning he is between 20 and 30 years of age, weighs 70 kilos, is 170 cm tall, and is Western European or North American.
Until recently, healthcare data and drug trials have used this man to decide what works for women+'s health and diseases, as well as safe medication doses. Female medication has been developed and tested on male subjects.
Endometriosis is an enigma
We do not understand the cause of endometriosis, and we lack effective therapies to treat it. It is not solely a complex gynaecological or reproductive health condition, and it is frustrating to see it reduced to period pain and heat packs.
Despite being first described over a century ago, many aspects of endometriosis, including its development, progression, the pain it causes and its impact on fertility, remain poorly understood. The so‐called ‘gold standard’ definitive diagnosis remains dependent on invasive laparoscopic surgery, even with advances in ultrasound and magnetic resonance imaging (MRI) technology.
In Australia, too many general practitioners (GPs), gynaecologists and nurses in schools, hospitals and health centres are unaware of endometriosis symptoms. This delays diagnosis and significantly impacts physical and mental health, quality of life, capacity to study and work, social life and intimate relationships.
Endometriosis is the third‐leading cause of non‐fatal disease burden among females, and each year it results in 40 500 endometriosis‐related hospitalisations. It can occur in girls as young as eight. Pregnancy is not a ‘cure’, it simply reduces and disrupts the estrogen that feeds the lesions, while the woman+ is pregnant and breastfeeding. For many, symptoms persist beyond menopause and hysterectomy. This is a lifelong, life‐defining, gendered disease.
Hippocrates, who was known as the ‘father of medicine’, described women+'s health and pelvic health issues as a ‘wandering womb’, believing the uterus dislodged and moved around the body. In a way, modern science confirmed his theory. Endometriosis is a system‐wide hormonal disease in which cells like those found in the uterus or womb grow in the wrong places. This results in inflammation and a cycle of healing and scarring.
It is challenging to diagnose, treat and manage symptoms that vary from day to day, month to month and ‘flare‐up’ without warning. To borrow from John Lennon, ‘Life is what happens to you while you're busy making other plans’. Endo symptoms do not consider your life's plans.
Worrying about flare‐ups can derail special events, social engagements, sports, work and study commitments. The stress from this worry impacts the nervous system, and growing evidence indicates this leads to pain and sensitivity. Chronic pain develops over time because of central sensitisation or pain hypersensitivity.
Pain is exhausting — it affects sleep, and the medications aimed at easing it can make you feel sick, drowsy and, worse, can cause addiction. All of this fatigue causes psychological distress.
The average time to diagnose endometriosis is six and a half years, and it can be even longer depending on where you live. It is not fair that people in rural and regional areas are disadvantaged by ‘postcode lottery’. New ways to screen for endometriosis and more effective therapies to treat it are urgently needed. Early recognition of symptoms and timely intervention are crucial.
As you will read, it is a heartbreaking yet consistent theme among those who have shared their personal journey with endometriosis that, when they sought medical help, even while exhibiting severe pain, heavy menstrual bleeding, and bowel and urination issues, they were dismissed, belittled, ignored and their symptoms and suffering minimised.
Endometriosis is a political issue
In 2017, the Australian Government apologised to those living with endometriosis at the launch of the nonpartisan Parliamentary Friends of Endometriosis Awareness. The Minister for Health and Aged Care, the Hon. Greg Hunt, said:
On behalf of all of those in parliament and all of those who have been responsible for our medical system, I apologise. This condition should have been acknowledged at an earlier time in a more powerful way and will never be forgotten again.
This led to the development and funding of the Australian National Action Plan on Endometriosis (NAPE). The five‐year plan expired in 2023 and the federal government has not committed to a new plan or confirmed ongoing funding beyond the programs already in progress.
Substantial new and ongoing funding is urgently needed for research investment. We need long‐term, renewed and targeted efforts to understand the impact of endometriosis on girls and women+, their health, fertility and economic disadvantage.
In particular, priority populations face intersectional disadvantage, including Aboriginal and Torres Strait Islanders, those from culturally and linguistically diverse and religiously conservative traditions. Menstruation and reproductive women+'s health are often taboo and, therefore, not discussed, or even actively avoided. Young girls and those in rural and regional areas need access to education, and the LGBTQIA+ community urgently needs barriers to healthcare access removed.
We need to teach girls and women+ to advocate for themselves
Girls and women+ should be encouraged and supported to advocate for themselves as the person at the centre of their multidisciplinary and integrated care. They deserve confidence in self‐management of symptoms, and should be forearmed with tools to do so at home, school or work.
The personal endo journeys we share, the cold, hard reality of living with a warm heat pack; endo bloat; heavy bleeding at any time of the month; digestive issues; the impact on intimate relationships; the roller‐coaster of fertility; heartbreak of pregnancy loss; reduced social, work and financial security; the ‘endo gender pay gap’; and disrupted social and community life are a call to action.
We need to inform, advise and educate the community as a whole and form a safety net around girls and women+ experiencing pelvic pain and symptoms that might be endometriosis, its ‘ugly sister’ adenomyosis, polycystic ovary syndrome (PCOS) or be related to their bowel or bladder.
When I say ‘we’, I mean me as the author in partnership with the contributors to this book; the ‘endo warriors’ from all ages and stages of life who share their experiences, as well as the doctors and professors, researchers and other health providers who share their expertise.
We aim to empower you with up‐to‐date, trustworthy, evidence‐based, medically sound and useful information so that you can be heard, understood, supported and, importantly, validated. We want to grow your confidence in developing action plans and knowing when you need to escalate medical intervention.
You'll learn about the four D's of endometriosis, and here are the first couple. Research from the Universities of Adelaide and Monash of women+ living with endometriosis found 65.8 per cent reported period pain (dysmenorrhoea) and 61.1 per cent reported painful sex (dyspareunia) despite medical and surgical intervention. In the previous three months, 82.7 per cent reported chronic pelvic pain. On average, they had sought help from three different health practitioner specialties in the previous 12 months for their endometriosis. Unfortunately, medical misogyny, gaslighting and the postcode lottery result in disparities in health practitioners taking symptoms seriously enough to refer to specialists.
The endo journey
We will guide you through the complicated spiderweb of referral pathways to help manage pain, fertility challenges and life‐impacting consequences. We will show you how to foster an integrative health approach involving gynaecologists, pain specialists, dietitians and allied and complementary health professionals, mental health support and other healthcare providers.
You will also learn about informed decision making, a fundamental aspect of patient‐centred healthcare that involves open communication between patients and healthcare practitioners to make decisions dependent on each unique circumstance, taking into consideration beliefs and familial, social and personal priorities. This is particularly important for those from culturally, linguistically and religiously diverse communities.
We aim to equip healthcare professionals and practitioners with the skills and knowledge to diagnose, treat and help manage the confronting symptoms of their patients.
Nothing tells a story better than one written using the words of those who have lived the experience, and we are grateful to the many brave and diverse voices who have shared their vulnerabilities, emotions and impacts of persistent pelvic pain and other experiences.
They share strategies to empower you to live well in every aspect of your life and embrace it fully and richly so you can travel along the ‘yellow brick road’ and not get lost in the weeds. We aim to do this with humour and respect for those with chronic health issues. We will explore research into intricate interactions between genetics, lifestyle and environment, and how treatments can improve health outcomes.
Even if you have not personally experienced endometriosis symptoms, we aim to educate through cold plunge immersion, taking you from your ambient, pleasant comfort zone into the world of medical misogyny and the ‘P party’ filled with pain, periods, poo, pee and painful sex.
If you care for someone impacted by this relentless condition, we aim to empower you as parents, partners, family, workmates, community members and sports teams to advocate for them.
Endo activism
The term ‘endo warrior’ appears throughout the book; this has become the catchcry of the movement within the endometriosis community to combat stigma and promote awareness. It emphasises the strength and courage of those living with endometriosis, portraying them as warriors fighting against a condition that is often misunderstood or dismissed.
Yellow has been associated with endometriosis awareness campaigns since 1980. In March 1993, Endometriosis Awareness Week began in Milwaukee, Wisconsin, and today, international Endometriosis Awareness Month is in March each year.
I am honoured to be on the organising committee for the 2025 World Congress on Endometriosis in Sydney, Australia. Researchers from across the globe will share their work aimed at improving diagnosis and treatment, and finding a cure. The World Endometriosis Society also focuses on the impacts it has on those living with endometriosis, including medical, surgical and fertility; allied, complementary and alternative treatment; pain mechanisms and management; and people, policy and politics in endometriosis.
I welcome you on this journey of awareness, and sincerely hope this book contributes to bringing the discussion of endometriosis and the associated symptoms into the public discourse so women+ experiencing this debilitating disease can get the diagnosis, treatment and understanding they deserve.
I have chosen the sunflower to represent yellow, the colour for ‘endo warriors’, and because the flowers follow the sun as they grow. When they reach maturity, their stems become fixed, stuck. This symbolises the life‐defining impact of endometriosis for women+. Without a timely diagnosis, treatment and fertility advice, too many become impacted by the life‐long disease, which invades every facet of their lives, like the endo lesions.
Let’s begin.
PART ITune in Understanding endo
CHAPTER 1What is endometriosis?
Endometriosis is the presence of normal tissue in abnormal places.
The monthly menstrual cycle occurs when the hormone estrogen signals the tissue in the innermost layer of the uterus, the endometrium, to plump up with blood and thicken so that it can support the implantation of a fertilised egg. When a pregnancy doesn't occur, the lining breaks down and leaves the body; this is a period.
In endometriosis, similar cells to this lining grow outside of the uterus, and respond to the hormone signals from estrogen just like the lining of the uterus does — they grow and bleed with the menstrual cycle. Endometriosis commonly involves the pelvic area (below the belt) and impacts the ovaries and fallopian tubes. It can affect nearby organs, including the bowel, rectum and bladder, and it can also affect other organs outside the pelvic cavity.
This causes chronic, long‐term inflammation, which is your body's defence system's response to the presence of those endometriosis cells. Unlike normal endometrium, this tissue doesn't leave the body during menstruation, leading to inflammation and scar tissue formation. These are called lesions and adhesions. Both cause pain in endometriosis but are different.
Lesions are patches of endometrial‐like tissue that vary in size and colour (clear, brown, black, blue, red or white). They can be small, flat, raised or nodular, and are usually found in the pelvic area, but can occasionally appear in organs like the brain or lungs. There are three main types of lesions:
superficial peritoneal lesions: small patches on the peritoneum (the lining of the abdominal cavity)
endometriomas (chocolate cysts): cysts on the ovaries filled with thick brown fluid
deep infiltrating endometriosis (DIE): aggressive lesions affecting deeper tissues.
Adhesions are thick bands of scar tissue that bind organs together. They result from inflammation and injuries, not from hormonal responses like lesions. Adhesions can be caused by endometriosis, surgery, infection or other tissue damage.
The presence of endometriosis in the pelvis can cause several different symptoms, including pain and trouble achieving pregnancy.
Are heavy, painful periods normal?
It is important to be able to distinguish between normal menstrual cramps and endometriosis pain. The following five factors might help you start to identify whether your periods are within the normal range or if there is something more going on.
1. Timing and duration
Normal menstrual cramps typically begin one to two days before a period starts and subside a few days after bleeding begins.
Endometriosis pain often starts as many as one to two weeks before a period and can last throughout and even after the period ends. The pain is more constant than cramping.
2. Severity
Menstrual cramps are usually mild to moderate in severity and can be managed with over‐the‐counter pain medication.
Endometriosis pain is often described as severe, debilitating and not relieved by typical pain medication. It can disrupt daily activities.
3. Cyclical vs non‐cyclical
Menstrual cramps follow a cyclical pattern, occurring only around the time blood and other matter are discharged from the uterus during menstruation. The menstrual cycle begins on the first day of your period and ends when your next period begins.
Endometriosis pain can be constant, with heightened pain during menstrual periods but also between cycles.
4. Progression
Period cramps tend to be relatively consistent from cycle to cycle.
Endometriosis pain often progressively worsens over time as the condition advances if it is left untreated.
5. Other symptoms
Normal periods may involve bloating, breast tenderness and mild back pain.
Endometriosis has additional symptoms such as painful intercourse, heavy bleeding, gastrointestinal issues (diarrhoea, constipation, nausea) and infertility.
Symptoms to look out for
While not an inclusive list, the following highlights the varied symptoms people with endometriosis may experience.
Pain is the most reported symptom of endometriosis. The location of the pain will depend on the inflammation and scar tissue, as well as the time of the menstrual cycle. Some people will have multiple symptoms.
Pelvic pain
Women+ with endometriosis often feel pain ‘below the belt’ during menstruation and ovulation. Some women+ experience this for a long time (chronic pelvic pain). The following symptoms can be some of the most obvious and common signs of endometriosis.
Painful periods and cramps
This is called dysmenorrhea. Severe pain before and during periods from an early age, even as young as eight, can be one of the first indicators of endometriosis. These cramp‐like pains may extend into the abdomen or lower back.
Heavy menstrual bleeding or irregular periods
The technical definition for heavy menstrual bleeding is anything exceeding 80 millilitres. This is hard to measure, so be guided by how often you change your sanitary products — if it is hourly or close to it, visit your GP. Other symptoms include getting up during the night to change period products, passing clots (especially if they're bigger than a 50‐cent coin) or feeling dizzy or tired. Women+ with endometriosis may experience heavy menstrual bleeding or irregular menstrual periods lasting more than seven days.
Heavy menstrual bleeding affects a quarter of girls and women+ from when they start periods until menopause (the ‘reproductive years'). Over two‐thirds of them are iron deficient.
Bleeding between menstrual periods
Spotting or bleeding between menstrual periods can be a symptom of endometriosis.
Pain when toileting
This is called dyschezia for poo and dysuria for wee. Lesions and adhesions can grow around the bladder, bowel and rectum. Inflammation can cause issues with frequent weeing, constipation, diarrhoea and the feeling that poo is ‘stuck’. This may be worse around your period; for many, it happens frequently and all month.
Pain during or after sex
This is called dyspareunia. The pain is most commonly described as occurring during intercourse rather than at the start or end, and is often more severe with deep penetration. In one study, pain during or after sex was reported by 92 per cent of their sample of women+ with endometriosis.
Pain in other areas
Endometriosis has also been found outside the pelvis, which can result in gastrointestinal issues, fatigue and pain in other areas of the body, such as joints.
Leg pain
Endometriosis lesions can affect the nerves that lead to the legs, causing pain, numbness or tingling down the legs. This could affect any of the following areas:
joints: back, knees, hips, hands and feet can be sore, stiff and achy, and they can be burning or numb; there is also an increased risk of rheumatoid arthritis
shoulders: lesions can grow on the diaphragm (in rare cases), causing referred pain in the shoulder area during menstruation
chest: lesions have been found growing on the lungs (in very rare cases), causing chest pain or a chronic cough
headaches/migraines: there is a higher risk of migraines and headaches, possibly due to the inflammatory nature of the condition.
Digestive and gastrointestinal symptoms
Gastrointestinal symptoms can also be common with of endometriosis, and this presents with a range of symptoms to watch out for.
Endo belly
Distended, swollen bloating can occur any time of the month, but is most common around ovulation and your period. Sometimes this is accompanied by nausea, vomiting, toileting problems, cramps or stomach pain, indigestion, heartburn, gas pains and farting, constipation or diarrhoea. It is always unwelcome and has a negative impact on body image.
Many women+ with endo initially seek help from gastroenterologists and are diagnosed with irritable bowel syndrome (IBS), delaying the diagnosis of endometriosis. It is really hard to find the reason for bloating when the small intestine is about 6 metres long; the large (wider, not longer) intestine runs for 1.5 metres, and it includes the rectum, which is around 12 centimetres. Sometimes, endometriosis lesions can be near the bowel, or on it, but inflammation causes discomfort regardless of the cause.
A recent study on biopsychosocial health outcomes for adult women+ with co‐occurring endometriosis and IBS symptoms found individuals were ‘inclined to exhibit more complex change trajectories in psychological distress, magnification, and fatigue over time, with a trend towards worse outcomes overall’ than those with endometriosis alone.
Genetics and gastrointestinal issues
A 2023 study from the University of Queensland's Institute for Molecular Bioscience by Yang et al. involving highly respected researchers Professor Grant Montgomery and Professor Gita Mishra found genetic risk factors are shared among several gastrointestinal disorders, including IBS, peptic ulcer disease, gastro‐oesophageal reflux disease, inflammatory bowel disease and endometriosis.
Women+ with endometriosis were found to be twice as likely to have an IBS diagnosis compared to women+ without the disease, and were 1.4 times more likely to have a diagnosis of gastro‐oesophageal reflux disease.
They also compared medication use data for gastrointestinal disorders and endometriosis from the Australian Pharmaceutical Benefits Scheme (PBS) with the Australian Longitudinal Study on Women+'s Health (ALSWH), which provided further evidence of the likely co‐occurrence of the diseases and disease symptoms.
What about adenomyosis?
You might have also heard the term ‘adenomyosis’ before. Approximately one‐third of patients with endometriosis also have adenomyosis, which is a condition where endometrial‐like tissue grows into the muscular wall of the uterus (myometrium). It is confined to the uterus, causing it to enlarge. This is more common in women+ in their forties and fifties who have given birth at least once, as well as those who have had uterine surgery.
Adenomyosis often causes heavy and painful periods and pelvic pressure. Both conditions can significantly impact quality of life and may require specialised care from a gynaecologist; for example, the presence of adenomyosis may make it harder to get pregnant and increase the risk of miscarriage.
Does endometriosis have different stages or levels?
Between 1973 and 2021, 22 endometriosis classification, staging and reporting systems were published, but there is still no international agreement on how to describe the disease. If the experts can't define endometriosis, how do they expect those living with it to express it in a way that is understood?
The most common classification is the Revised American Society of Reproductive Medicine (rASRM; American Society for Reproductive Medicine; 1996), which was developed as a four‐stage classification for endometriosis based on the endometrial lesions, specifically the number of endometrial implants and their depth.
Stage 1 is identified by minimal lesions, few superficial implants (they may be located on the ovarian peritoneum), and possibly the absence of symptoms, although some individuals may experience mild pelvic discomfort or painful periods (dysmenorrhea), occasional pain during intercourse (dyspareunia) and infertility.
Stage 2 presents as mild lesions, and painful periods may be more frequent, along with pelvic discomfort and a heightened risk of infertility due to pelvic adhesions. There may be more and deeper implants (which may be located on the ovarian peritoneum, the tissue that supports the ovaries and the fallopian tubes). Pelvic pain may be moderate, particularly during menstruation and ovulation. Pain during intercourse may also be more frequent.
Stage 3 involves moderate lesions, with many deep implants, small cysts on one or both ovaries, and filmy adhesions. Severe pelvic pain can be debilitating and impact daily activities. Chronic pelvic discomfort throughout the menstrual cycle is common. Other symptoms include persistent period pain and painful sex; gastrointestinal symptoms, such as bloating, constipation or diarrhoea; and an elevated risk of infertility due to compromised ovarian function and fallopian tube blockage close to the ovary (tubal occlusion).
Stage 4 is identified by many deeply implanted lesions, dense adhesions and large cysts on one or both ovaries. Excruciating pain is common, with extensive pelvic involvement leading to significant adhesions and organ dysfunction.
Severe menstrual cramps and painful sex, painful bowel movements and urination, heavy periods, and spotting or bleeding between periods can significantly impact quality of life and mental health.
Another staging classification system by the American Association of Gynecologic Laparoscopists (AAGL, 2021) was reviewed in Australia in 2024 but was found to be ‘not superior’ to the rASRM staging system.
The EndoFound Classification (2018) was developed by the Endometriosis Foundation of America. It proposed using more descriptive categories based on the anatomical location within the pelvis and the abdominal cavity and the level of infiltration. The EndoFound categories are:
Category I: peritoneal endometriosis
: The most minimal form of endometriosis, where the peritoneum (the membrane that lines the abdomen) is infiltrated with endometriosis tissue.
Category II: ovarian endometriomas (chocolate cysts):
Endometriosis is already established within the ovaries, but the chocolate cysts are at risk of breaking and spreading endometriosis into the pelvic cavity.
Category III: deep infiltrating endometriosis I (DIE I):
The first form of deep infiltrating endometriosis involves organs within the pelvic cavity, which can include the ovaries, rectum and the uterus, and can even lead to ‘frozen pelvis’ when the organs become attached together by scar tissue or adhesions.
Category IV: deep infiltrating endometriosis II (DIE II):
A more extreme form of deep infiltrating endometriosis involves organs both within and outside the pelvic cavity, including the bowel, appendix, diaphragm, heart, lungs and brain.
Your doctor might also mention three types of endometriosis, which are included in the ESHRE Information on Endometriosis based on the ESHRE Guideline on Endometriosis (Endometriosis guideline for patients, 2022).
Superficial peritoneal endometriosis:
The lesions involve the peritoneum and may be flat and shallow. They do not invade the space underlying the peritoneum. This is the most common form.
Cystic ovarian endometriosis (ovarian endometrioma):
An endometrioma is a cyst, usually found in the ovaries, in which the wall of the cyst contain endometriosis. The cysts are filled with old blood, which affects the colour, which is why they are also referred to as ‘chocolate cysts’. Most women+ with endometrioma cysts will also have superficial and/or deep endometriosis present elsewhere in the pelvis. This form is less common.
Deep endometriosis:
Also known as DIE, an endometriosis lesion is defined as deep if it has invaded at least 5 millimetres beyond the surface of the peritoneum. Given the peritoneum is very thin, deep lesions always involve tissue underlying the peritoneum (the retroperitoneal space) or pelvic organs. This is the least common form.
Be aware
Stages don't predict the severity of pain. While the staging of endometriosis provides a framework for understanding the extent of the disease, the severity of pain experienced by individuals can vary widely and is influenced by factors beyond the stage alone.
Be prepared
Individuals found to have stage 1 (minimal), or stage 2 (mild) endometriosis may experience severe pain, while those with stages 3 and 4 may have few or no symptoms. The stage you are diagnosed with will not necessarily define or explain your levels of pain.
This can be challenging; you may feel like a bit of a ‘fraud or a faker’ finding out you have stage 1 endo if you report your pain as severe. You're not exaggerating; pain is as individual as you are.
Endo myths and facts
Unfortunately, there is so much misinformation and scuttlebutt out there about endometriosis, it can be really difficult to find a name for your pain and other symptoms — and Dr Google and social media don't provide evidence‐based, medically sound information relevant to you. Your physical and mental health experience is unique and deserves to be seen, heard, diagnosed and treated. This book, the resources and the references provide trustworthy and relevant information. Let's ‘endo’ the confusion and clear the wood from the tri‐osis.
Myth: Pregnancy cures endometriosis.
Fact: Pregnancy may lessen symptoms temporarily because, when pregnant, the menstrual cycle stops, and the estrogen doesn't signal the endometriosis tissues to grow and bleed. Once the normal monthly cycle returns after childbirth, leading to periods resuming, symptoms and lesions often return.
Myth: Severe period pain is normal.
Fact: Severe period pain that interferes with daily life is not normal and should be investigated with a doctor.
Myth: Endometriosis is rare in teenagers and young women+.
Fact: Endometriosis can affect children from the age of eight, teenagers and young women+.
Myth: Hormonal treatments cure endometriosis.
Fact: Hormonal treatments only suppress symptoms temporarily. Surgery by a gynaecologist, preferably accredited by the Australasian Gynaecological Endoscopy and Surgery Society (AGES) is the only effective medical treatment for removing endometriosis lesions.
Myth: You can't get pregnant with endometriosis.
Fact: While endometriosis can cause infertility, 70 per cent of women+ with the condition are still able to conceive, either naturally or with fertility treatment. Early diagnosis and treatment can reduce the rates of infertility. Hormonal medicines have varying levels of contraception.
Myth: Hysterectomy cures endometriosis.
Fact: Removing the uterus does not cure endometriosis; it stops adenomyosis and heavy menstrual bleeding, and you will no longer have periods or be able to carry a baby. Endometriosis lesions similar to the lining of the uterus can continue to grow elsewhere in the body, mainly in the pelvic cavity.
Myth: Endometriosis is caused by emotional issues.
Fact: Endometriosis is a physiological disease with complex hereditary, epigenetic and molecular causes, not an emotional condition.
Myth: Abortion or douching causes endometriosis.
Fact: There is no scientific evidence linking douching (flushing the vagina with water) or abortion with the development of endometriosis.
Myth: Endometriosis can be diagnosed through blood or urine tests.
Fact: Endometriosis cannot be diagnosed via these tests; specialised imaging or laparoscopy is required. Research is underway to study the efficacy of pathology tests, but it has not been validated.
Myth: Endometriosis only affects women+.
Fact: Endometriosis affects people presumed female at birth based on sex characteristics. It can, therefore, affect transgender, non‐binary and gender‐diverse individuals. In this book, we refer to women+ to include all individuals designated female at birth, which may include transgender individuals.
For trustworthy, evidence‐based information, visit EndoZone, Jean Hailes for Women's Health, Julia Argyrou Centre for Endometriosis at Epworth and other websites listed in the resources section.
What causes endometriosis?
So now that we know what endometriosis is (and isn't) … what actually causes it? Unfortunately, the exact cause of endometriosis is still unknown. Research on this is ongoing and there are a number of medical theories. Environmental factors are also thought to play a role, with some chemicals thought to interfere with the body's endocrine (hormone) system (endocrine disruptors).
What might be going on in the body?
Let's get a bit nerdy. Here are some technical terms you might have heard, or might want to know more about, relating to important theories about what causes endo in 14 per cent of girls and women+. There are more questions than answers, which is why research is so important, and you can help by taking part in studies. Here are some theories:
Estradiol
Estradiol is a form of estrogen, a hormone that plays a crucial role in the reproductive system. It determines how the tissue in the uterus grows and regulates the menstrual cycle. It also signals the endometriosis lesions to grow and this triggers inflammation that is linked to pain.
Retrograde menstruation
Backwards, or retrograde menstruation, occurs when menstrual blood flows backward through the fallopian tubes into the pelvic cavity instead of leaving the body. This can cause endometrial cells to implant and grow outside the uterus, contributing to endometriosis.
Endocrine disruptors
Epigenetics is the study of how our genes are impacted by the environment we live in; for example, what we eat and what chemicals we are exposed to, which can disrupt your hormones. ‘Endocrine disruptors’ are chemicals that can interfere with the endocrine (hormone) system in the body. Ultimately, they can cause changes in the way your body's cells perform. This is known as an ‘epigenetic process’, meaning it relates to your genes and the way your DNA turns your genetic code into functions — and one of the functions that can be disrupted is estrogen production. When it comes to endo in particular, it's suspected that endocrine disruptors might interfere with our steroidogenesis genes. These genes are crucial for the production of hormones like estrogen, and disruption can lead to abnormal growth of endometrial tissue outside the uterus, a characteristic of endometriosis.
Environmental factors can affect hormones
Endocrine disruptors can be naturally produced (like phytoestrogens in soy) or man‐made (like industrial chemicals, pesticides, plastics and pharmaceuticals). Growing evidence and research show these disruptors impact endometriosis, which is influenced by estrogen. Endocrine disruptors that mimic or interfere with estrogen can potentially worsen the condition as they:
mimic natural hormones: tricking the body into overreacting or reacting at the wrong time
block hormones: preventing natural hormones from binding and functioning properly
alter hormone levels: interfering with the production, transport and breakdown of hormones, leading to imbalances.
Those living with endometriosis can also have other health challenges, which we explore later, and the impacts of endocrine disruptors can include:
reproductive issues: infertility, early puberty and developmental issues in foetuses
metabolic disorders: obesity, diabetes and thyroid problems
cancer: some are associated with an increased risk of cancers, particularly hormone‐related cancers like breast and prostate cancer.
These chemicals are found in many everyday items, including food packaging, cosmetics, toys and household cleaners. Exposure can also occur through environmental contamination, as industrial processes and agricultural practices result in the presence of these disruptors in air, water and soil.
Women+ exposed to endocrine disruptors while in the womb may have a higher risk of developing endometriosis. These chemicals can interfere with hormone function and lead to changes in the developing foetus.
Be aware
You can reduce exposure to endocrine disruptors and chemicals by being mindful of your cleaning and gardening products and opting for safer alternatives when possible. Look for natural products, including cloths made from ecofriendly cotton, bamboo, hemp, linen and recycled fabric that can be washed. You can also make your own cleaners at home, which is much cheaper and healthier. Vinegar, baking soda, rubbing alcohol, dish soaps and citrus oils can reduce fumes and artificial smells. Take precautions with garden chemicals, use gloves, cover skin and wear a mask.
Be prepared
You may feel powerless to avoid endocrine disruptors, but you can choose to avoid plastic containers, bottles and packaging, canned food and beverages, fast and processed foods. Instead, choose fresh and organic food, and supplement your diet with vitamin C, iodine and folic acid.
You can't prevent endometriosis, but you can reduce its symptoms and impact by limiting exposure to chemicals; maintaining a healthy diet; avoiding alcohol, caffeine and soft drinks; exercising regularly; and aiming to have a low percentage of body fat.
This book aims to encompass up‐to‐date and clinically sound evidence‐based information. Sections on diet (Chapter 10), exercise (Chapter 11) and self‐care (Chapter 12) will empower you on your journey with endometriosis.
CHAPTER 2Understanding the pain and fatigue
Understanding pelvic pain
Pain from endometriosis often doesn't match the extent of the disease. As discussed in Chapter 1, endometriosis can be categorised as stage 1 (mild endometriosis ) to stage 4 (the most severe), but this does not automatically correlate to the levels or types of pain a person experiences. Instead, pain tends to be more related to where the endometriosis deposits are located and how deeply they penetrate.
The International Association for the Study of Pain defines pain as: ‘Unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage.’
The European Association of Urology defines chronic pelvic pain syndrome as:
Persistent pain in structures related to the pelvis … is often associated with negative cognitive, behavioural, sexual and emotional consequences, as well as with symptoms and signs related to the lower urinary tract, sexual, bowel, pelvic floor or gynaecological dysfunction.
The aptly named endocannabinoid (ECS) system affects pain, inflammation, mood, sleep, appetite and digestion, immune function, memory and learning. Studies have shown that in women+ with endometriosis, the ECS impacts inflammation, the growth of lesions and the perception of pain.
Endo warriors will relate to the term ‘paingry’ to describe the impact of pain on moods.
By definition, persistent pelvic pain is felt most days and lasts for more than six months. It is a complex chronic pain condition affecting the pelvic region, below the belly button and between the hips, where the bowel, bladder, ovaries, uterus and fallopian tubes are located. It is estimated to affect between 15 and 25 per cent of women+ of child‐bearing age until menopause. It is believed that 50 to 60 per cent of women+ with chronic pelvic pain have endometriosis.
The Pelvic Pain in Australian Women report (2023) by Jean Hailes for Women's Health found that almost half of Australian women+ have experienced pelvic pain in the last five years, and 28 per cent of all Australian women+ reported difficulty performing daily activities due to pelvic pain.
It also found that 21 per cent of all Australian women+ needed to take leave or an extended break from exercise (48 per cent), work or study (45 per cent) because of pelvic pain. Mental and emotional wellbeing was reported as an issue for 27 per cent of all Australian women+; in comparison, 15 per cent said it hurt their relationship with a partner, and 31 per cent indicated their relationships with partners were negatively affected, while 22 per cent reported issues with friendships and family relationships.
Inflammation and nerves
Endometriosis does not just affect the reproductive organs but can also have broader impacts on the nervous system, contributing to the complex nature of the condition. The relationship between inflammation, nerve endings and pain signalling in endometriosis is important. Nerves allow communication between different parts of the body by sending sensory information from our skin, muscles and internal organs to the brain. This allows us to sense pain. Nerves also carry signals from the brain to muscles and glands, enabling voluntary movements (like walking) and involuntary actions (like heartbeat and digestion).
