Endometriosis

What is Endometriosis?

Endometriosis is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus (1). It causes a chronic inflammatory reaction that may result in pain, the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body.

It is common with 1 in 10 women suffering world-wide.

When you menstruate, the endometrium inside your uterus is shed. If you have endometriosis, it is hypothesised that your body cannot remove the endometrial-like cells that have grown outside your uterus. These cells bleed and cause inflammation, and can create scar tissue over time.

Endometriosis may cause pain, particularly when you are menstruating, and it can reduce your fertility. In other women, there are no symptoms and the woman may never knows that she has endometriosis, or has had it in the past.

Symptoms of endometriosis

Apart from pain and infertility, endometriosis can cause other symptoms such as:

• Period pain: mild to severe
• Pain with bowel movements particularly at period time
• Deep pain with penetrative sex
• Diarrhoea or constipation
• Bladder symptoms
• Nausea
• Tiredness / lethargy
• Heavy and/or irregular periods

Endometriosis can be quite different from one woman to the other. Some women feel a lot of pain, and some feel none or hardly any (an estimated 40% have no pain). Sometimes the pain is constant, or incapacitating. 

Painful periods are not normal. If you have very painful periods and are missing school, work or other activities it’s important to see your doctor, as it can be treated. You can read one woman’s journey of recovery here and see the links at the bottom of this page to EndoActive for videos of more stories.

Endometriosis may be associated with a number of medical conditions, including irritable bowel syndrome (IBS) and chronic Monilia vaginitis. There are common features such as immunity or nerve sensitivity, which are observed to a certain degree in all these conditions, but there is no direct link between IBS and Endometriosis – they do not cause one another.

1. World Health Organization (WHO). International Classification of Diseases, 11th Revision (ICD-11) Geneva: WHO 2018.

What causes Endometriosis?

There is no consensus about what exactly causes endometriosis.

Endometriosis is a condition of the reproductive years and is very rare after menopause. 

One theory is that the symptoms may be due to your body’s ‘response’ to the endometrial-like tissue, in particular your nervous system and immune system to contribute to pain and inflammation. It is likely that there are a number of risk factors, including genetic factors, problems with your menstrual cycle, other health factors, stress and your environment. Oestrogens play a strong role and often the pieces of endometriosis produce oestrogens locally. Suppression of the menstrual cycle is an effective treatment for the disease. This helps prevent long term problems.

If you are diagnosed with the condition, it’s reassuring to know there are various treatment options available. Because each woman is different, we will work out a treatment plan that is best for you.

The stages of Endometriosis

There are various stages of endometriosis. The treatment we recommend for you will depend partly on which stage your condition has progressed to.

Stage I

In stage I endometriosis, there are only a few small deposits of endometriosis and minor amounts of inflammation. You might experience pain, and removing the endometriosis can sometimes reduce this. Usually your fertility is not affected.

Stage II

The deposits of endometriosis are more noticeable in stage II, but they don’t affect the mobility of your other organs. If you have pelvic pain, removing the endometriosis will usually alleviate it.

Stage III

In stage III endometriosis, the deposits affect your ovaries and grow deeper into the tissues. They are more likely to cause you pain and to affect your fertility. Surgical removal is more complex, as the endometriosis is more deeply rooted into the tissues.

Stage IV

Stage IV endometriosis is characterised by more inflammation, and cystic lesions that may be growing on the ovaries. Skilled surgeons can remove these lesions. Sometimes we’ll enlist surgeons from different specialties (like colo-rectal or urology), or perform the surgery in two steps.

Stage V

Stage V endometriosis is very rare. In these cases the deposits are widespread all over the abdomen, and sometimes outside the abdomen. Treatment for this type of endometriosis involves different specialists working together to reduce your pain and minimise the impact on vital organs such as the kidney and bowel. Complete surgical resection is not possible, but you can still go on to lead a comfortable, pain-free life.

How is endometriosis treated?

When we treat endometriosis, we treat all the symptoms that come with it, such as the pelvic pain or infertility. These can be treated with pain education, manual therapy, medication or surgery.

Endometriosis with no symptoms

If you have endometriosis but no pain or fertility concerns, you don’t necessarily need treatment. Regular check-ups with your doctor are often the best way to monitor your condition.

However there is some evidence that endometriosis of the ovary itself (which can be suspected by sonographic examination) predisposes to the development of ovarian cancer in a small number of cases (estimated at around 2%).

In the presence of ovarian endometriosis, sonographic surveillance of the ovarian cyst on a regular basis is essential. In deciding whether to proceed with surgical removal, you need to consider all factors, including the projected difficulty of the surgical procedure and level of tumour markers in the blood.

The risk of surgical removal of the endometriosis is about equal to the risk of surveillance.

Endometriosis with pain but no fertility concerns

Depending on how severe your symptoms are, you can choose from a few different treatments for pain caused by endometriosis:

• Physiotherapy or osteopathy: These can help alleviate pelvic pain. Because they are hands-on, non-invasive approaches, they are often the first option we recommend.
• Medication: your body’s normal physiological response to the pain (nervous system sensitivity) can greatly contribute to your pain and there is a variety of medication options you can discuss with your WHRIA physician to help get your pain under control
• Surgery: We might use laparoscopic surgery (keyhole surgery) to remove your endometriosis, or other more major surgery if your condition is more serious. If endometriosis is severely affecting your quality of life – for example if you are experiencing abnormal uterine bleeding – your doctor might suggest a hysterectomy.

Endometriosis with fertility concerns but no pain

If you are not experiencing pain, but have concerns about your fertility, it is best to try to avoid surgical treatment. This is because we want to avoid removing normal ovarian tissue, so that your number of eggs is not reduced.

We will check the patency (openness) and mobility of your fallopian tubes. If we find a blockage, surgery might be necessary – with every effort to keep access to the ovaries for egg pick-up open.

Endometriosis with pain and fertility concerns

If your endometriosis is causing you pain and you have fertility concerns, we will do everything we can to reduce your pain, while limiting the damage so that there is no impact on your fertility.

• Non-surgical pain management: We can help to alleviate your pain with medication, physiotherapy or osteopathy.
• Surgery: Sometimes, surgery is recommended. Your surgeon will take great care to preserve your reproductive organs, while removing as much of the endometriosis as they can to minimise your pain.

Treatment at WHRIA

If you are diagnosed with endometriosis, your doctor will decide on a treatment plan with you, depending on your symptoms and how serious they are.

Surgery

Consultation – you will be given an appointment to consult with one of the physicians at WHRIA.  A thorough review or history and presentation will be followed by a physical examination.  Once the need for surgery is confirmed, the physician will explain the procedure, risks and benefits.

Sonography – we recommend that you undergo an ultrasound of the pelvic cavity to establish the possible extent of the endometriosis.  This will allow for a better planning of the surgery.  If you have the ultrasound at WHRIA, the physician will have the opportunity to examine the images first hand, including a scan for deep infiltrating endometriosis (DIE).  These images will also serve as a baseline for future examinations.

Surgery Planning:

If you have endometriosis in stage II or III and are scheduled for surgery, this is a guide of the process. If your endometriosis has progressed further, your doctor will work out an individualised plan with you.

Before surgery:

• Initial consultation: Your doctor will do a physical examination. They’ll confirm that surgery is the best option, and they will explain the procedure, risks and benefits to you.
• Sonography: This is an ultrasound procedure used to get a better idea of the extent of your endometriosis. It allows us to better plan the surgery.

Preparing for surgery:

• Call on day one of your cycle: It’s best to have surgery during the early phase of your cycle because there is less bleeding and a lower risk that you might be pregnant. If you are taking any form of hormonal suppressive therapy, this rule does not apply.
• Antibiotics: We will give you antibiotics to prevent infection, unless there is concern about allergies.
• Pain control: We will give you intravenous medication for pain control initially, as well as a special anaesthetic gel developed by WHRIA (Pluscaine®), which is applied to the raw surfaces and reduces post-operative pain. You will also be given a script for oral pain medication to take home.
• Clotting prevention (thromboprophylaxis): If your surgery lasts more than two hours, or if you have a particular medical condition requiring special attention, we may give you Heparin at the time of surgery to reduce the risk of pulmonary embolus or deep vein thrombosis.

After surgery:

• Follow-up consultation: This is usually planned 2-4 weeks after your surgery. Your doctor will discuss options for continued management of endometriosis such as hormonal suppression.
• Follow-up sonography: If you had cystic or deeply infiltrating lesions, your doctor will schedule a follow-up sonography three months after your surgery.

Further information

If you’d like more information you can view our Health Information page.

Resources

• Endometriosis Shared Perspectives. Developed by EndoActive, these free videos feature experienced specialists, including WHRIA’s Sherin Jarvis, and a wide range of patient interviews. Whether you’re a health professional or a person living with Endo, you’ll benefit from this evidence-based information. These resources are supported by a grant from the Australian Government Department of Health.

For support and educational events see the following organisations.