Endometriosis is a chronic condition in which tissue similar to the lining of the uterus (the endometrium) grows outside the uterus. This tissue most commonly affects the ovaries, fallopian tubes, and the lining of the pelvis, but can also involve the bowel, bladder, and in rare cases other organs. Like the uterine lining, this tissue responds to hormonal changes during the menstrual cycle – it thickens, breaks down, and bleeds – but because it has nowhere to go, it causes inflammation, scarring, and the formation of adhesions (bands of fibrous tissue that can bind organs together).
Endometriosis is a leading cause of chronic pelvic pain and one of the most common causes of fertility difficulties in women.
Despite its prevalence, the average time from first symptoms to diagnosis in Australia is approximately 6.5 years – a delay that reflects both the normalisation of period pain and limited awareness of the condition.
How common is Endometriosis?
Endometriosis affects approximately 1 in 9 Australian women of reproductive age – around 830,000 women.
It can also affect transgender and non-binary people assigned female at birth. It occurs across all ethnicities and does not discriminate by age, though it is most commonly diagnosed in women in their 20s and 30s.
Many people with endometriosis also have adenomyosis – a related condition in which endometrial-like tissue grows within the muscular wall of the uterus itself.
Symptoms vary considerably between individuals, and the severity of symptoms does not always reflect the extent of disease.
Common symptoms include:
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- Painful periods (dysmenorrhoea) – pain that is more severe than typical period pain, often beginning before the period and lasting throughout
- Chronic pelvic pain – ongoing pain in the lower abdomen or pelvis that is not limited to menstruation
- Pain during or after sexual intercourse (dyspareunia)
- Pain with bowel movements or urination, particularly during menstruation
- Heavy or irregular menstrual bleeding
- Bloating, nausea, or bowel changes around menstruation
- Fatigue, which can be significant
- Difficulty conceiving
Some people with endometriosis have no symptoms at all and only discover the condition during investigations for infertility.
The exact cause is not fully understood.
Several theories exist:
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- Retrograde menstruation – the most widely accepted theory proposes that menstrual blood flows backwards through the fallopian tubes into the pelvis, where endometrial cells implant and grow
- Immune system dysfunction – an impaired immune response may fail to clear misplaced endometrial tissue
- Genetics – endometriosis runs in families; having a first-degree relative with the condition significantly increases risk
- Stem cell or lymphatic spread – may explain endometriosis found in distant sites such as the lungs or diaphragm
Endometriosis can only be definitively confirmed by laparoscopy – a surgical procedure in which a camera is inserted into the abdomen to directly visualise and biopsy affected tissue.
However, non-invasive tools are used first:
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- Ultrasound – transvaginal ultrasound can detect endometriomas (ovarian cysts caused by endometriosis, often called "chocolate cysts") but cannot reliably detect superficial or deep infiltrating endometriosis
- MRI – provides more detailed imaging, particularly for deep infiltrating endometriosis involving the bowel or bladder
- Laparoscopy and biopsy – the definitive diagnostic procedure and often used for treatment at the same time
A diagnosis should not be ruled out based on a normal ultrasound – many forms of endometriosis are not visible on imaging.
There is no cure for endometriosis.
Treatment aims to relieve pain, slow disease progression, and support fertility where desired.
Management is individualised and may involve a combination of approaches.
Hormonal therapies
Hormonal treatments work by reducing or stopping menstruation, which limits the activity of endometrial-like tissue:
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- Combined oral contraceptive pill – used continuously to suppress menstruation and reduce pain
- Progestogens – dienogest (Visanne) is a progestogen used specifically for endometriosis. Other progestogen options include norethisterone and medroxyprogesterone acetate.
- Levonorgestrel IUD (Mirena) – reduces menstrual blood flow and pain
- GnRH agonists – such as leuprolide (Lucrin Depot) and goserelin (Zoladex), which induce a temporary menopause-like state by suppressing oestrogen
Surgery
Laparoscopic surgery to remove or ablate endometriosis lesions and divide adhesions can provide significant pain relief. It may also improve fertility outcomes. Endometriosis can recur after surgery.
Fertility treatment
For those with endometriosis-related infertility, treatment may include ovulation induction, intrauterine insemination (IUI), or IVF.
Multidisciplinary care
Specialist gynaecologists, pain specialists, physiotherapists, and psychologists all play a role in managing endometriosis. Referral to a gynaecologist with expertise in endometriosis is recommended for moderate to severe disease.
The following specialty medications are available at Ace, a specialty pharmacy for Endometriosis.
Note: The combined oral contraceptive pill, Mirena (levonorgestrel IUD), and other progestogens are commonly used in endometriosis management but are not specialty medications.
With Ace, you’ll benefit from:
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- Expert Support — Our dedicated team of health concierges is always available to answer your questions, provide guidance, and help you navigate your condition with confidence.
- Specialty Medication — We offer a wide range of specialty medications and support services, designed specifically for those living with chronic illnesses. Whether you’re looking for help managing a specific condition, or simply need access to the medications you need, we’ve got you covered.
- A Wide Range of Conditions — From diabetes to heart disease, and everything in between, we help manage a variety of special condition
Take control of your health and well-being, and start your journey to better health with Ace today.
Endometriosis-Specific Support
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- Endometriosis Australia – information, support, and advocacy for Australians with endometriosis; includes a specialist finder
- Jean Hailes for Women's Health – Endometriosis
- Pelvic Pain Foundation of Australia
Clinical & Research Resources
