The 7 main signs of endometriosis

Published February 2023 | 5 min read
Expert contributor Alexis Wolfe, CEO of Endometriosis Australia
Words by Gina Flaxman

Endometriosis can take several years to diagnose. Here are the main signs you might have this chronic condition.

Experiencing debilitating pain around your period or very heavy or irregular periods isn’t an issue you should put up with every month. It could be one of the signs of endometriosis.

Endometriosis is a chronic inflammatory condition where cells similar to those that line the uterus grow in other parts of your body – most commonly in the pelvis. Instead of leaving your body during menstruation, they bleed, causing pain and inflammation. These cells heal, creating scar tissue and ‘adhesions’ between the uterus, ovaries, fallopian tubes and bowel, which can be painful, and affect fertility.

Endometriosis Australia says it takes an average of six-and-a-half years to get a diagnosis. This is because people with endometriosis can experience a number of symptoms which could be mistaken for other conditions, resulting in misdiagnosis. Some people may also have no symptoms at all.

“Endometriosis generally presents in the lower abdominal area,” says Alexis Wolfe, CEO of Endometriosis Australia. “But it has been found in many other parts of the body including on the lungs and heart, and in the brain. So, it can be really tricky to piece together all of these symptoms.”

In addition, Alexis says the normalisation of some of the symptoms, like period pain, means people are often reluctant to seek help as they worry they won’t be taken seriously. If you have one or more of the following symptoms, you should see your GP.

The 7 main signs of endometriosis

1. Pain around your menstrual cycle

“One of the most common symptoms is abdominal pain in and around menstruation and ovulation,” says Alexis. “It’s very common for people to have a small amount of pain when they have their period. But pain that is interfering with your life, where you’re unable to get out of bed or go to work, that’s not normal.”

Pain around your menstrual cycle can also be a condition called dysmenorrhea, which causes severe cramps and pain during your period. Primary dysmenorrhea is lifelong and is caused by abnormal uterine contractions. Secondary dysmenorrhea is often due to another underlying physical condition, like endometriosis or pelvic inflammatory disease.

2. Heavy or irregular bleeding

Very heavy or irregular menstrual bleeding, or bleeding for longer than normal, could be a sign of endometriosis.

Alexis says irregular periods are also a common symptom of polycystic ovary syndrome (PCOS) and it’s possible to have both conditions, which can make diagnosis complicated. A study found women diagnosed with PCOS were more likely to be diagnosed with endometriosis.

Women can have endometriosis and PCOS. A 2021 review of research on both conditions suggests that endometriosis occurs in 7 to 8% of females with PCOS and is usually mild.

3. Constipation, diarrhoea or bowel problems

Constipation, diarrhoea or pain during bowel movements are common symptoms of endometriosis, particularly when the cells attach themselves to the bowel. Many people with endometriosis who report these symptoms are often misdiagnosed with gastrointestinal diseases like irritable bowel syndrome (IBS), Crohn’s disease and appendicitis.

A study review found more than one in five women with endometriosis also have IBS and the relationship between the two conditions is still not fully understood.

4. Fatigue

Feeling physically tired and weak, particularly around the time of your period, could be a sign of endometriosis.

Many women may have their fatigue dismissed and are told it’s all in their head, but a study found fatigue is an underestimated symptom of endometriosis that affects the majority of people with the condition.

5. Bloating

Increased abdominal bloating around the time of your period is also common with endometriosis. The bloating can cause pain and discomfort in your abdomen and back.

Many other conditions, like IBS, Crohn’s, ulcerative colitis and food intolerances, can also cause abdominal bloating. If your bloating is frequent and severe, it’s important to get it properly investigated.

6. Pain during or after sex

If you experience pain during or after sexual intercourse (also known as dyspareunia), it may be a sign you have endometriosis.

Painful intercourse can also be due to conditions like vaginal yeast infections and sexually transmitted infections, so you need to rule out other issues by speaking with your GP.

7. Difficulties getting pregnant

Many women with endometriosis have no symptoms and it’s only diagnosed when they're trying to fall pregnant. About one third of women with endometriosis have fertility issues.

How is endometriosis diagnosed?

A definitive diagnosis is currently only available with a laparoscopy (abdominal keyhole surgery) and a biopsy, where a small tissue sample is taken and analysed. These procedures are performed by a gynaecologist.

Alexis says ultrasounds can show tissue that could be signs of endometriosis, which can help with early diagnosis and treatment. Early treatment is important as the disease can impact your fertility and quality of life. A report found there were more than 34,000 endometriosis-related hospitalisations in Australia in 2016–17.

Prepare for your appointment

If you think you may have endometriosis, Alexis says your GP is your first port of call. She says you can help the diagnosis process by following these steps.

• Keep a journal of your symptoms: “Track your symptoms against your cycle. Give an indication of how the pain felt on a scale of 1–10 and where it was. If you can provide your GP with that information, they might be better able to point you in the right direction.”
• Book a longer consult: “The main thing we’re told by women with endometriosis is they don’t feel like the GP has enough time to dig through all their symptoms. Booking a longer consultation will give you time to settle into the appointment and talk about what you’re experiencing and it will allow the doctor to ask more questions.

Endometriosis treatment

Treatments for endometriosis include surgery and hormonal therapies like the contraceptive pill. Contraceptives can help by suppressing menstrual periods, which may slow endometriosis growth. Alexis says the important thing to remember is there is hope. “There’s a lot of fear around a diagnosis of endometriosis but, with proper management, you can live a [good] quality life.”

If you have one or more of these signs, it’s best to talk to your GP. Our partnership with GP2U, an online video GP service, makes it easier for you to access telehealth services. Speak to a GP from the convenience of your own home – GP2U doctors can issue prescriptions, referrals to specialists and provide medical certificates just like visiting a GP in a practice.

Through our partnership with GP2U, all HCF members with health cover can access a standard online video GP consultation (up to 10 minutes) for a fee of $50. See hcf.com.au/gp2u for more information.