Living with endometriosis - A silent epidemic

At least 1 in 9 women in Australia live with endometriosis, and yet it takes 7 years on average for a woman to get an endometriosis diagnosis.

For many women, endometriosis symptoms can have an impact on day to day life, as well as their mental wellbeing.

Although there's no cure for endometriosis, there are many effective treatment options and support services that can help with managing symptoms and improving your quality of life. Knowing how to spot the signs is the first step.

In this guide, we explain how to know if you have endometriosis, what the common symptoms are and when to get help.

What is endometriosis?

Endometriosis is a common chronic condition that affects around 1 in 9 women and people assigned female at birth in Australia. It occurs when tissue that’s similar to the tissue that lines the inside of the uterus grows outside of the uterus. It usually affects the ovaries, fallopian tubes or pelvic region, but can sometimes affect other parts of the body as well.

Even though endometriosis tissue is not in the uterus, it behaves like it is. This means it builds up and then sheds and bleeds when a woman has her period. Overtime, endometriosis can cause scarring, inflammation and other complications.

Living with endometriosis can be very painful, especially during menstruation. For some women it can also cause fertility issues. Severe symptoms may make it difficult to keep up with everyday life such as work, relationships and hobbies. Although there's no cure for endometriosis, there are many effective treatments that can help.

How to know if you have endometriosis

Women living with endometriosis experience a wide range of symptoms. Some women may not have any obvious symptoms while others may experience severe pain that impacts their daily life.

If you suspect you might have endometriosis, or experience painful periods, it's best to speak to your doctor. Getting a diagnosis sooner can help you better manage your symptoms.

Endometriosis often goes undiagnosed for many years. Many women find out they have endometriosis because they are having trouble falling pregnant or endometrial tissue is found during another operation.

The only way to confirm endometriosis for certain is through a minor surgical procedure called laparoscopy. This involves inserting a small camera into the abdomen to see if there is any endometriosis tissue. The doctor may take a sample of the tissue for testing.

Endometriosis symptoms

Endometriosis symptoms vary from person to person. Some people may have severe symptoms, others may have very few or no symptoms at all. Symptoms can get worse over time, but tend to ease after menopause.

Common symptoms include:

  • Painful period
  • Heavy or irregular bleeding
  • Pain when going to the toilet
  • Pain when having sexual intercourse
  • Pain in lower back or pelvic area
  • Fatigue
  • Nausea
  • Constipation or diarrhoea
  • Difficulty falling pregnant

When to get help?

You should speak to your doctor if:

  • Your period pain is getting in the way of daily life, such as work or social events
  • You're finding it hard to cope with your symptoms
  • Over the counter medicines for period pain aren't helping
  • Symptoms are getting worse
  • Your mental health is affected

It's best to get help sooner than later. The right treatments can help you better manage your symptoms, improve your quality of life and help you overcome challenges you might be facing at work or home.

How is endometriosis treated?

There are many effective treatments for endometriosis, including hormonal treatments, surgery and physiotherapy. Your doctor can help create a treatment plan that's right for you, and may refer you to other services that can help.

Common endometriosis treatment options include:

  • Physiotherapy – physiotherapy can help with pain management as well as bowel and bladder issues.
  • Medication – this may include hormone-based medications such as the pill or IUD, as well as pain relief medications.
  • Surgery – in some cases, minor surgery is recommended to remove endometriosis tissue. In severe cases, more extensive surgeries may be recommended, such as laparotomy or hysterectomy.
  • Pain relief strategies – heat therapies, over the counter pain relief medications and relaxation techniques can help with managing pelvic pain.
  • Self-care strategies – eating healthily, exercising, sleeping well and looking after your mental health can all help with pain management and overall wellbeing.

Support for living and working with endometriosis

Most people living with endometriosis lead healthy and full lives. The right support can help you feel more confident managing symptoms and overcoming challenges you might be facing.

Peer support groups

Connecting with other people who are going through similar experiences can help you feel more understood and supported. Ask your GP about support groups in your area, or visit the Endometriosis Australia website.

Mental health helplines

Living with the effects of endometriosis can lead to stress, anxiety and depression symptoms. If you need someone to talk to, you can call a mental health helpline or chat online with a counsellor.

If your mental health symptoms persist, speak with your GP who can refer you to a psychologist or psychiatrist.

Employment support

Endometriosis can make it hard to keep up with the demands of a job. If you're struggling to find work or cope in your current role, support is available.

Endometriosis is a supported condition of the Disability Employment Services program. For more information, speak with APM about how we help people like you find meaningful work and get support to succeed in the workplace.

After this guide on how to know if you have endometriosis, read our other guides: