Endometriosis: Symptoms, Diagnosis & Treatment

13 min read
Endometriosis symptoms, diagnosis and treatment

Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside the uterus. It can cause painful periods, ongoing pelvic pain, pain during sex, bowel or bladder symptoms and difficulties becoming pregnant.

Symptoms vary considerably. Some people experience severe pain while others have mild symptoms or no obvious symptoms at all.

The exact cause isn't known, but treatments and support are available to help manage symptoms and improve quality of life.

If period pain regularly stops you from working, studying, exercising, sleeping or doing everyday activities, you don't have to simply put up with it. A GP can help assess what's happening and discuss the next steps.

Key takeaways

  • The exact cause of endometriosis isn't known. There is also no known way to prevent it.
  • Symptoms vary. They can include painful periods, ongoing pelvic pain, pain during sex, bowel or bladder symptoms and fertility difficulties.
  • Surgery isn't the only way to investigate endometriosis. In Australia, a specialised transvaginal ultrasound is generally the first imaging test.
  • A normal scan doesn't completely rule it out. Some types of endometriosis, particularly superficial disease, may not be visible on imaging.
  • Treatment is individual. Options can include pain relief, hormonal medicines, surgery and multidisciplinary support.
  • Severe period pain deserves attention. See a GP if pelvic or period pain affects your everyday life.

Contents

What is endometriosis?

Endometriosis occurs when tissue similar to the endometrium, the lining inside the uterus, grows elsewhere in the body.

It most commonly affects structures in the pelvis, including the ovaries, fallopian tubes and tissue around the uterus. It can also involve the bowel, bladder and other areas and, less commonly, occur outside the pelvis.

Illustration of endometriosis in the pelvis

Endometriosis is associated with inflammation and can contribute to pain, scar tissue and adhesions. Adhesions are bands of scar tissue that can cause tissues or organs to stick together.

It's a chronic condition, but its effects vary enormously. Some people experience severe pain or fertility difficulties while others have relatively mild symptoms or discover endometriosis during investigations for something else.

The amount or location of endometriosis also doesn't reliably tell you how much pain someone will experience. A person with relatively limited disease may have significant pain while someone with more extensive endometriosis may have fewer symptoms.

What are the symptoms of endometriosis?

Symptoms can vary from person to person and may also change over time. They can occur around your period or at other times during the month.

Possible symptoms include:

  • Painful periods: cramps or pelvic pain that are severe, worsening or disruptive to normal activities.
  • Pelvic or abdominal pain: pain before, during or after a period or pain that persists at other times.
  • Pain during or after sex: particularly deeper pain with vaginal penetration. Our guide to painful sex and its possible causes covers other reasons this can happen.
  • Bowel symptoms: pain when opening your bowels, bloating, constipation or diarrhoea, sometimes worsening around your period.
  • Bladder symptoms: pain when urinating or other urinary symptoms that may follow a cyclical pattern.
  • Heavy menstrual bleeding: periods that are unusually heavy or difficult to manage.
  • Fatigue: ongoing tiredness that may affect everyday life.
  • Fertility difficulties: some people with endometriosis have difficulty becoming pregnant.

You don't need to have all of these symptoms to have endometriosis.

Similar symptoms can also occur with conditions such as adenomyosis, pelvic inflammatory disease, irritable bowel syndrome, bladder pain conditions and pelvic floor dysfunction. Symptoms alone can't confirm endometriosis.

Equally, not having severe period pain doesn't rule it out.

What causes endometriosis?

The exact cause of endometriosis isn't known.

It's a complex condition that is influenced by oestrogen, genetics, immune activity and probably several other factors rather than having one simple cause.

Retrograde menstruation

One theory involves retrograde menstruation, where some menstrual blood flows backwards through the fallopian tubes and into the pelvis.

Retrograde menstruation is common, though, and most people who experience it don't develop endometriosis. That means it can't explain the condition on its own.

Genetics

Endometriosis can run in families. Having a close relative with the condition increases your likelihood of developing it, although family history doesn't determine whether you will or won't have endometriosis.

Hormonal and immune factors

Researchers are also investigating the way hormones, inflammation and the immune system contribute to the development and persistence of endometriosis.

Some factors are associated with endometriosis, including starting periods at a younger age, shorter menstrual cycles and long or heavy periods. These are associations rather than proof that any of these things cause the condition.

There is currently no known way to prevent endometriosis.

There's also no good evidence that someone develops endometriosis because of their diet, weight, exercise habits, stress levels or other everyday lifestyle choices.

How is endometriosis diagnosed?

Getting a diagnosis can take time because endometriosis symptoms overlap with several other conditions and aren't the same for everyone.

Importantly, you no longer need surgery as the first step towards diagnosis.

Start by discussing your symptoms

Your GP may ask about:

  • period pain
  • pelvic or abdominal pain
  • how heavy your periods are
  • bowel or bladder symptoms
  • pain during or after sex
  • family history of endometriosis
  • fertility concerns
  • how symptoms affect work, study, sleep, exercise or everyday life

A symptom diary can be particularly useful because the impact of the pain is just as important as giving it a number out of 10.

If talking about intimate symptoms feels difficult, our guide to talking to a doctor about vaginal concerns may help you prepare.

Ultrasound

Current Australian guidance recommends a transvaginal ultrasound as the preferred first-line imaging investigation when endometriosis is suspected.

This involves placing an ultrasound probe inside the vagina to obtain detailed images of the pelvic organs.

If a transvaginal ultrasound isn't appropriate or possible, a transabdominal ultrasound may be considered instead.

Where possible, scans for suspected endometriosis are best performed and interpreted by healthcare professionals with expertise in gynaecological and endometriosis imaging.

A normal ultrasound doesn't rule out endometriosis. In particular, superficial endometriosis may not be visible on imaging.

MRI

An MRI isn't usually the first investigation for everyone with suspected endometriosis.

It may be recommended if ultrasound findings are inconclusive or if deeper endometriosis involving areas such as the bowel, bladder or ureters is suspected.

MRI can also help specialists understand the location and extent of deeper disease when planning treatment or surgery.

Laparoscopy

Laparoscopy is keyhole surgery performed under general anaesthetic.

A surgeon makes small incisions in the abdomen and uses a camera to inspect the pelvis. Endometriosis can sometimes be treated during the same operation and tissue samples may be taken for examination.

Laparoscopy may be considered when:

  • symptoms strongly suggest endometriosis but imaging is normal or inconclusive
  • symptoms continue despite other treatments
  • surgery may also provide treatment
  • the benefits of surgery are considered to outweigh the risks for that individual

Whether to have surgery should be a shared decision between you and your healthcare team, taking into account symptoms, imaging, previous treatment, fertility plans and your preferences.

What treatments are available for endometriosis?

There's no single treatment that suits everyone.

Your treatment plan may depend on the symptoms you're experiencing, how much those symptoms affect your life, your medical history, previous treatments and whether you're currently trying to become pregnant.

There is currently no cure for endometriosis, but treatment can help reduce symptoms and improve quality of life.

Pain relief

Pain-relief medicines such as paracetamol or non-steroidal anti-inflammatory medicines including ibuprofen may be recommended where appropriate.

These medicines aren't suitable for everybody, so check with your GP or pharmacist if you have other health conditions, take other medicines or are trying to conceive.

If over-the-counter pain relief isn't controlling significant pain, go back to your GP rather than simply continuing to manage it yourself.

Hormonal treatment

Hormonal medicines can help reduce endometriosis-related pain for many people.

Options can include:

  • the combined contraceptive pill
  • progestogen-only medicines
  • hormonal intrauterine devices
  • contraceptive implants or injections
  • specialist hormonal medicines used for more persistent symptoms

The best option depends on your health, symptoms, possible side effects and preferences.

Hormonal treatments generally prevent pregnancy while you're using them, so they're not appropriate when you're actively trying to conceive.

Some endometriosis treatments are subsidised through Australia's Pharmaceutical Benefits Scheme. Ask your doctor which options may apply to you.

For general information about hormonal contraceptive methods, see our guide to contraception options in Australia.

Surgery

Laparoscopic surgery may be used to remove or treat endometriosis.

Whether surgery is worthwhile depends on factors such as where the endometriosis is located, symptoms, previous treatment, fertility goals and how likely surgery is to improve the problems you're experiencing.

Surgery can help some people but doesn't guarantee permanent pain relief. Endometriosis and associated symptoms can return, and some people still need ongoing treatment afterwards.

Does a hysterectomy cure endometriosis?

No. A hysterectomy removes the uterus, but endometriosis occurs outside the uterus, so hysterectomy isn't a guaranteed cure for endometriosis or pelvic pain.

It may be considered in particular circumstances, especially if other uterine conditions such as adenomyosis are also contributing to symptoms, but it's major surgery and requires careful specialist discussion.

Pelvic health and multidisciplinary support

Persistent pelvic pain can involve more than endometriosis lesions alone, particularly after pain has been present for a long time.

Depending on your needs, your healthcare team may include:

  • a GP
  • a gynaecologist
  • a pelvic health physiotherapist
  • a pain specialist
  • a psychologist
  • a fertility specialist
  • other allied health professionals

You can use our directory to find a pelvic health physiotherapist in Australia.

If pelvic pain has made it difficult to relax your pelvic floor, our guide to pelvic floor relaxation techniques may also be useful.

What about diet, acupuncture, yoga or supplements?

Some people find approaches such as physiotherapy, yoga, acupuncture, psychological support or dietary changes useful for coping with symptoms or improving their general wellbeing.

Research into many complementary approaches is still limited and they shouldn't replace medical assessment or treatment when symptoms are significant.

Check with your doctor or pharmacist before taking supplements or herbal medicines because some can interact with prescribed medicines.

Sleep, movement and finding ways to manage stress can support general wellbeing, but no particular diet, exercise routine or supplement has been shown to cure or prevent endometriosis.

Living with endometriosis

Endometriosis can affect much more than your period.

Ongoing symptoms may affect work, study, relationships, sex, exercise, sleep, fertility and mental wellbeing.

A few practical things can make appointments and ongoing care easier:

  • Track patterns: record pain, bleeding, bowel or bladder symptoms, medication and how symptoms affect your day. Our downloadable period tracker can help.
  • Describe what the pain stops you doing: for example missing work, cancelling plans, waking during the night or being unable to exercise.
  • Write down your questions: take them to appointments so you can discuss treatment benefits, possible side effects and alternatives.
  • Ask about ongoing support: persistent pelvic pain may benefit from more than one type of healthcare professional.
  • Review your plan: if symptoms change or treatment isn't helping, arrange another appointment rather than assuming nothing else can be done.

A symptom tracker can help support a conversation with your healthcare professional, but it can't diagnose endometriosis.

Living with chronic pain can also affect mood, stress and mental wellbeing. If symptoms are leaving you anxious, low or struggling to cope, tell your healthcare team about that too.

When should you see a doctor?

Make an appointment with a GP if:

  • period pain is severe or getting worse
  • pain regularly stops you working, studying, exercising, sleeping or doing normal activities
  • you have ongoing pelvic or abdominal pain
  • sex is repeatedly painful
  • you experience bowel or bladder symptoms that seem linked to your cycle
  • your periods are unusually heavy
  • you're having difficulty becoming pregnant

You don't need to wait until symptoms are unbearable before asking for help.

Seek urgent medical care for sudden or severe abdominal or pelvic pain, particularly if it's accompanied by fainting, fever, persistent vomiting, very heavy bleeding or the possibility of pregnancy.

Call triple zero (000) or go to your nearest emergency department if symptoms are severe. If you're unsure how urgently you need care, you can call healthdirect on 1800 022 222.

Don't assume new or severe pain is β€œjust endometriosis”.

Getting support in Australia

The Australian Government currently funds 33 Endometriosis and Pelvic Pain Clinics around Australia, with clinics operating in every state and territory.

These clinics provide multidisciplinary assessment, treatment and referral pathways for people living with endometriosis and persistent pelvic pain.

You can find your nearest service through the Australian Government Endometriosis and Pelvic Pain Clinics directory or ask your GP about referral options.

For further information and support, see:

Frequently asked questions about endometriosis

How common is endometriosis?

Current Australian Government and RANZCOG information estimates that at least 1 in 7 Australians assigned female at birth are diagnosed with endometriosis by their late 40s.

Can endometriosis be diagnosed without surgery?

Yes. Current Australian guidance recommends specialised imaging, usually transvaginal ultrasound, as the first-line investigation for suspected endometriosis. MRI may be useful in particular circumstances. Laparoscopy is still important for some people but is no longer required as the first step towards diagnosis. A normal scan also doesn't completely rule out endometriosis.

Does endometriosis always cause painful periods?

No. Some people have severe period pain while others experience persistent pelvic pain, painful sex, bowel or bladder symptoms, fertility difficulties or few noticeable symptoms. The amount of endometriosis present also doesn't reliably predict pain severity.

Can endometriosis be cured?

There is currently no cure. Treatments can reduce symptoms and surgery helps some people, but symptoms or endometriosis can recur. Management should be individual and reviewed over time.

Can pregnancy cure endometriosis?

No. Pregnancy isn't a treatment or cure for endometriosis. Some people's symptoms change during pregnancy because of hormonal changes, but pregnancy doesn't remove endometriosis and symptoms may return afterwards.

Is endometriosis the same as adenomyosis?

No. Endometriosis involves tissue similar to the uterine lining occurring outside the uterus. Adenomyosis involves endometrial-type tissue within the muscular wall of the uterus. They are different conditions, although someone can have both.

Does endometriosis affect fertility?

It can. Some people with endometriosis have difficulty becoming pregnant, while many others conceive without fertility treatment. If pregnancy is important to you or you've been having difficulty conceiving, discuss this with your GP, gynaecologist or fertility specialist.

Related reading

Sources and further reading

This article provides general educational information and isn't a substitute for individual medical advice, diagnosis or treatment. Speak with a qualified healthcare professional about symptoms or treatment decisions.