Endometriosis

What is endometriosis

Endometriosis is a long term (chronic) condition. It causes pelvic tissue like the lining of your womb (endometrium) to grow outside your womb and in other parts of your body. The extra tissue can't leave your body in the normal way during your period. Instead, it usually flows back through your tubes and into your pelvis. It stays there causing pain, inflammation and sometimes scarring.

Adenomyosis is a similar condition where this tissue grows into the muscle wall of your womb.

Signs and symptoms

Endometriosis symptoms can be different for everyone. There are some common symptoms to look out for:

• painful periods and severe cramping (dysmenorrhoea)
• heavy or long periods
• constant pain or pressure in your legs, thighs and pelvic area (below your tummy)
• pain when you poo or pee
• pain during sex
• bloating, where your tummy sticks out more than usual (some people call this endo belly)
• feeling very tired, especially during your period
• having trouble getting pregnant.

When to get help

See your GP if:

• you have heavy periods
• you have severe cramping, or sharp, knifelike period pain
• you have bloating for more than 3 weeks
• you bleed between periods or after sex, or if sex is painful
• your symptoms are affecting your daily life
• your symptoms are making you feel anxious or depressed.

You should also talk to your GP if you're struggling to get pregnant.

Before your appointment

Your GP will ask about your symptoms, how long you’ve had them, and how they affect you. It’s important to give them as much information as possible.

Before your appointment, write down:

• how often you get your period
• when you have pain, what it feels like and where in your body it is
• how intense the pain is each time – give it a score out of 10
• how much you bleed, including how often you have to change your tampon, pad, cup or disc.

Record any other symptoms, for example – constipation, diarrhoea, nausea, bloating, mood changes, or if you feel very tired.

Your notes will help your GP understand:

• what are your best and worst days
• triggers, such as certain foods or stress
• how often you miss work, exercise or social events
• any patterns or trends you notice
• how it's affecting your life.

Describing pain

Words you can use to describe your pain include:

• stabbing
• burning
• dull
• aching
• sharp
• constant
• throbbing
• shooting
• cramping.

How to track your symptoms

Symptom diaries and period tracking apps can help you keep track of your symptoms. Many apps offer features to protect your identity and health data.

Some women prefer to make notes in their phone or computer calendar and use colours and emojis to represent symptoms. You can also use voice notes or draw where the pain is on a body map.

Diagnosis

To help find out what's happening, your GP might do:

• a pelvic exam, where they check inside your vulva, vagina and cervix
• medical imaging tests like an ultrasound or MRI.

The results of these tests might suggest that you have endometriosis. Sometimes your GP will use these results to recommend treatment.

If you're having symptoms of endometriosis as a younger person or child, your GP can refer you to a paediatric and adolescent gynaecologist for your care. You won't need to have a pelvic exam.

Your doctor might recommend a procedure called laparoscopy. Under general anaesthetic, a specialist will insert a small camera through your belly button. They'll look for signs tissue is growing outside your womb. If they do it, they might be able to treat it at the same time. You don't always need a laparoscopy. Your doctor can make a diagnosis based on your symptoms and what they see on imaging tests.

Talk to your GP if you don’t agree with your diagnosis. If you need more help, see another GP for a second opinion.

Treatment

Your treatment will depend on your age, symptoms and whether you want to get pregnant.

It might include:

• medicine to reduce pain, swelling and bleeding
• hormone therapy
• surgery to destroy or remove unwanted tissue
• removing the womb (hysterectomy).

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) has some useful resources for patients to help you navigate your diagnosis and treatment.

Care at home

Taking a warm bath or putting a heat pack on your tummy can help to relieve symptoms. You can also take paracetamol and ibuprofen or use a TENS machine for any pain.

It may also help to:

• stay active and get enough sleep
• reduce stress and inflammation
• eat a healthy diet with plenty of fresh fruit and vegetables
• try alternative therapies, such as acupuncture.

Having a baby

Most people with endometriosis will be able to have a baby without help. But some people may find it more difficult to get pregnant.

If you think you want to have children either now or in the future, you should talk to your GP. They can talk to you about treatments, such as:

• fertility medicines
• surgery (laparoscopy)
• IUI (intrauterine Insemination)
• IVF (in vitro fertilisation).

Pregnancy doesn’t cure endometriosis, but your symptoms might improve while you're pregnant or breastfeeding because you're not having a period.

Menopause

In the years leading to menopause, your hormone levels change. You might get heavier periods more often.

Your symptoms should improve after menopause when you stop having a period. Painful, heavy bleeding often stops.

Learn more about managing menopause.

Services and support

There are a range of support services for women affected by endometriosis.

healthdirect

healthdirect has more information to help you manage your condition, including a question builder to help you prepare for medical appointments.

QENDO

QENDO offers a range of services and practical support for anyone affected by endometriosis including telehealth clinics and a free helpline.

Ph: 1800 ASK QENDO (1800 275 736)

Information in other languages

Jean Hailes has women’s health fact sheets in other languages.