Endometriosis is a common inflammatory condition that occurs when tissue similar to the endometrium (the lining of the uterus) grows in other locations around the body. In many cases, endometriosis causes discomfort, pain, and, occasionally, fertility issues. Endometriosis may affect up to one in seven women. 

Despite it being a common condition, endometriosis can be challenging to diagnose due to the variability of its symptoms and their similarity to other conditions.  In some women, endometriosis may be present with no symptoms at all.

In this fact sheet, we’ll answer these questions: 

1. What is endometriosis?
2. How common is endometriosis?
3. What are the causes of endometriosis?
4. What are the symptoms of endometriosis?
5. How is endometriosis diagnosed?
6. Can endometriosis be cured?
7. What are the four stages of endometriosis?
8. How can endometriosis be treated?
9. Which parts of the body does endometriosis affect?
10. How does endometriosis affect pregnancy?
11. What support is available for people with endometriosis?
12. Further Reading

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What is endometriosis?

Endometriosis is a common condition where ‘endometrium’, a type of tissue similar to the inside lining of the uterus, grows in other areas of the body. 

Endometriosis is most commonly found around the female reproductive system, including the exterior of the uterus, fallopian tubes, ovaries and other organs within the pelvis.

The physiological effect of endometriosis include: 

• The presence of endometrial glands and stroma – these are called endometrial implants and usually occur outside of the uterus. 
• These endometrial implants are considered to be estrogen dependent which can respond to hormonal fluctuations with proliferatory and secretory activity. 
• Metabolic activity may include the release of cytokines and prostaglandins which can lead to chronic inflammatory response
• Characterised by neovascularisation and fibrosis
• Fibrosis and adhesions may lead to the physical alteration of the pelvic anatomy

Endometrium continues to behave as it normally would as if it was inside the uterus—it bleeds with each menstrual cycle. However, because it is unable to leave the body, like a normal menstrual cycle, it leads to inflammation and pain.

There are three types of endometriosis:

• Superficial Endometriosis (SE): This form of endometriosis involves the growth of endometrial-like tissue on the surface of pelvic organs and structures. These superficial implants are less than 5 mm in depth. 
• Ovarian Endometriosis (Endometriomas): Endometriomas are cysts filled with dark, reddish-brown blood that form on the ovaries as a result of endometriosis. They can vary in size and may cause the ovaries to adhere to the fallopian tubes or the pelvic wall, leading to pain and affecting fertility. 
• Deep Infiltrating Endometriosis (DIE): DIE is considered the most severe form of endometriosis. It involves the infiltration of endometrial-like tissue more than 5 mm under the peritoneum, which is the lining of the abdominal cavity. DIE can be located in or around organs such as the bowel, bladder, and, less commonly, the ureters and lungs. 

How common is endometriosis?

Recent Australian research suggests that endometriosis may affect as many as one in seven women. Despite its commonality, endometriosis is often underdiagnosed or diagnosed with a delay of up to nine years, sometimes due to the normalisation of menstrual pain or the variability of symptoms among affected individuals. 

What are the causes of endometriosis?

There is no single known cause of endometriosis. However research suggest that these factors contribute to the risk of developing endometriosis:

• Immune system disorders
• Genetic predisposition
• Hormonal imbalances
• Environmental toxins

What are the symptoms of endometriosis?

Endometriosis presents differently in different people. Symptoms may include:

• Pain around the pelvic area
• Changes to menstrual frequency, duration, or heaviness
• Pain going to the toilet
• Infertility
• Fatigue 
• Diarrhoea
• Constipation 
• Bloating 
• Nausea

How is endometriosis diagnosed?

Your doctor may follow this process for diagnosing endometriosis:

• Medical history and symptoms review: Your doctor will ask questions about your symptoms, including how severe they are and how long you’ve had them for. They may also ask about your family’s medical history. 
• An examination of the pelvic area: Your doctor may conduct a physical examination to check for cysts or scars, or any other physical indicators of endometriosis. 
• Ultrasound: A transvaginal ultrasound may be ordered to check for cysts associated with endometriosis (endometriomas) and assess the pelvis for evidence of superficial and deep endometriosis. Deep endometriosis may be detected during the ultrasound by specifically trained sonographers. Superficial endometriosis is more common, but not as easily diagnosed by ultrasound. The detection of superficial endometriosis is increasing with better technology and awareness of its subtle features.  

Ultrasound video demonstrating the appearance of a normal ovary

Ultrasound image of an endometrioma in the left ovary

• Magnetic Resonance Imaging (MRI): An MRI may be performed to check for endometriosis, or be used as an adjunct to a surgical procedure. 
• Laparoscopy: Still considered to be gold standard, this is a surgical procedure where a camera (laparoscope) is inserted into the pelvis.

Can endometriosis be cured?

There is no definitive cure for endometriosis but it is treatable. It is important to remember that sometimes endometriosis can recur after treatment.

What are the four surgical stages of endometriosis?

Endometriosis is classified into four surgical stages according to the extent, depth, location, and presence of scar tissue and endometriomas (cysts):

• Stage I (Minimal): This is the mildest form of endometriosis, featuring light lesions only.
• Stage II (Mild): Light lesions and shallow implants on the ovary and pelvic lining with minimal adhesions.
• Stage III (Moderate): Deep implants, small cysts on one or both ovaries, and more extensive adhesions.
• Stage IV (Severe): Large cysts on one or both ovaries, many deep implants, and thick adhesions. This stage may also involve implants on other organs outside of the pelvic cavity.

How can endometriosis be treated?

Treatment options vary depending on many factors, including the severity of symptoms, a desire for pregnancy, and previous treatment history. Your doctor will advise a treatment plan. 

Treatments are mainly aimed at providing relief, reducing and ideally eradicating symptoms to improve your wellbeing. As described by QENDO, there are three main treatment plans that your doctor may recommend to you. 

1. Drug therapy: used to manage endometriosis symptoms and minimise pain. This may include hormone therapies. 
2. Surgery: used to remove the tissue from your body. This has a higher success than drug therapy and can usually be performed at the time of diagnosis. It is important the surgery is performed by a gynaecologist who is familiar with the latest treatment standards for endometriosis. 
3. Alternative treatment: these can include herbal remedies, dietary change, acupuncture, reducing stress and exercise to reduce the pain. Endometriosis is not curable but IS treatable. But remember, sometimes endometriosis can recur after treatment.

Which parts of the body does endometriosis affect?

Endometriosis most commonly impacts the pelvic region. However it can also be found in other locations throughout the body, including but not limited to: 

• Peritoneum: This is the lining of the abdominal and pelvic cavity, and is the most common location for endometriosis.
• Intestines and rectum This leads to symptoms such as painful bowel movements, gastrointestinal pain, and irritable bowel syndrome-like symptoms.

Ultrasound video of a deep infiltrating endometriosis bowel nodule

• Bladder and urinary tract. This can cause urinary urgency, frequency, and pain during urination.

Ultrasound video of a deep infiltrating endometriosis bladder nodule

• Diaphragm and lungs: Though rare, endometrial-like tissue can implant in the diaphragm and even the lungs, potentially leading to chest pain and difficulty breathing.

Additionally, endometriosis lesions have been found in even more distant sites, such as the skin, scars (from previous surgeries), and in very rare cases, the brain. 

How does endometriosis affect pregnancy?

Endometriosis can influence pregnancy in different ways:

• Fertility issues: Endometriosis can create fertility issues in some women. This happens when ovulation and the fertilisation of the egg is interrupted by the presence of endometrial tissue.
• Increased risk of complications: Pregnant individuals with endometriosis may have a higher risk of certain complications, such as miscarriage, preterm labour, and placenta previa (where the placenta covers the cervix), compared to those without the condition.
• Pain management: For some, pregnancy may lead to a temporary relief of endometriosis symptoms, as menstruation halts and hormonal changes can suppress the condition. However, for others, pregnancy may not alleviate pain, and managing pain without compromising the pregnancy can be challenging.
• Obstetric outcomes: Studies suggest that endometriosis may be associated with increased risks of certain obstetric outcomes, including caesarean delivery and postpartum haemorrhage, though more research is needed to fully understand these relationships.

What support is available for people with endometriosis?

Here’s a list of support organisations:

• QENDO – A peak organisation providing support to those affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, by lobbying for national programs, better healthcare access, support, offering patients tools, services and programs to understand and take control of their health.
• Endometriosis Australia – A national charity aiming to increase recognition of endometriosis, provide education programs, and support research.
• CHARLI – a health tracking app that can help Australians take control of the diagnosis and management of endometriosis
• Pelvic Pain Foundation of Australia – Offers information and support for those suffering from pelvic pain, including endometriosis.
• Jean Hailes for Women’s Health – Provides comprehensive information on endometriosis and other women’s health issues, supporting women across Australia.
• The Australian Pain Management Association – Offers resources and support for people dealing with pain, including endometriosis-related pain.
• Healthdirect Australia – Government-funded service providing trusted health information and advice, including support and resources for endometriosis.

These organisations provide various forms of support, including information on diagnosis and treatment options, access to support networks and communities, and advocacy for better healthcare services for individuals with endometriosis.

Further Reading

• www.qendo.org.au
• endometriosisaustralia.org

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