What is endometriosis?

Published December 2019 | 4 min read
Expert contributors Associate Professor Louise Hull, fertility specialist; Associate Professor Anusch Yazdani, fertility expert 
Words by Carolyn Tate

Endometriosis is one of the most common gynaecological causes of chronic pelvic pain, affecting one in nine Australian women by age 44.

All women^* have endometrium cells that line the inside of their uterus. The body usually sheds these with blood as part of each menstrual cycle.

In women with endometriosis, cells like these also grow outside of the uterus, most commonly around the pelvic organs and reproductive organs, such as the bowel, rectum, ovaries and fallopian tubes. These cell growths – often called lesions – can cause inflammation and scar tissue.

Crippling menstrual cramps, gastrointestinal problems and pain during sex are among the most common symptoms of endometriosis, and some women with endometriosis will face fertility challenges as a result of the disease.

Here are eight facts worth knowing about endometriosis:

1. Endometriosis can occur at any age

Endometriosis can affect anyone from teenagers to older women — as a condition related to menstruation, symptoms can appear any time between puberty and menopause. Thanks to greater awareness about the disorder, more younger women are now being diagnosed than in previous years.

2. Pain caused by endometriosis is not normal

Many girls and women with endometriosis live with severe ovulation and period pain without knowing their experience is abnormal.

According to Australian advocacy organisation Jean Hailes for Women’s Health, period pain is considered ‘normal’ if:

• the pain only occurs on the first day or two of periods
• the pain goes away with period pain medication or the contraceptive pill
• a woman can go about her usual daily activities, uninterrupted by the pain.

“Period pain that requires time off school or work, that can’t be managed with the pill or analgesics, and is combined with other symptoms like stabbing pain, headaches, bladder or bowel pain,” is pain that can indicate endometriosis, says fertility specialist, Associate Professor Louise Hull.

If period pain lasts longer than a few days, doesn’t go away with medication, or gets in the way of everyday life, it doesn't necessarily mean a woman has endometriosis, but it’s important to seek medical advice.

3. Pain levels aren’t a sign of severity

The amount of pain experienced by a woman with endometriosis is no indicator of the severity of her condition. It’s possible to live with advanced endometriosis and experience very little pain, and vice versa.

Endometriosis symptoms can include:

• heavy or irregular periods
• abdominal or pelvic pain before and during a period, during or after sex, or going to the toilet
• bleeding between periods
• bleeding from the bladder or bowel
• changes to urination or bowel movements
• bloating
• feeling tired or moody
• difficulty conceiving.

It’s important for anyone experiencing ongoing endometriosis symptoms to see a doctor for a full assessment and support to treat endometriosis, even if they feel they’re coping with the pain.

4. Endometriosis can only be formally diagnosed through surgery

Endometriosis is a difficult condition to diagnose, partly because it is often mistaken for conditions with similar symptoms, such as pelvic inflammatory disease, fibroids, kidney stones, stomach ulcers, irritable bowel syndrome and cystitis.

The only way to diagnose endometriosis definitively is through laparoscopic surgery. During this procedure, an incision is made in the navel and a narrow tube and tiny camera are inserted. However, even a laparoscopy isn’t a guarantee of a correct diagnosis.

“Sometimes lesions can be subtle in young women,” says Associate Professor Hull. “Some women report that it [endometriosis] wasn’t diagnosed at their first laparoscopy, but at a subsequent one.”

5. A family history increases your risk

Research shows there’s a genetic risk factor to endometriosis, meaning you may be more likely to experience it yourself if a close family member has it. Women’s Health Queensland Wide also says that women with endometriosis who have family with the condition are more likely to suffer severe endometriosis.

6. Endometriosis doesn’t mean you’ll never get pregnant

According to the Australian Department of Health’s National Action Plan for Endometriosis, up to one in three women with endometriosis will experience some fertility challenges.

Queensland fertility expert Associate Professor Anusch Yazdani says that while endometriosis can cause issues for women trying to conceive, there are reasons to be optimistic:

“It’s important to understand that while the current evidence suggests that women with endometriosis are more likely to experience fertility problems, not all women with endometriosis will need assistance, and only a small number of women will ever require IVF,” he wrote in an article for Endometriosis Australia.

7. You can’t prevent endometriosis

Although the condition itself isn’t preventable, research suggests that the severity of endometriosis symptoms – such as painful periods, pain during sex and more – may be linked to high levels of oestrogen.

A hormone that helps to thicken the lining of the uterus during the menstrual cycle, oestrogen may therefore also thicken endometrial cells outside the uterus. One way to manage oestrogen levels is to take an oral contraceptive pill or use a contraceptive device, which is why these are common endometriosis treatment options. Many women also consider hormone therapy.

8. There is no cure for endometriosis

While there’s no cure for the condition, there are a range of treatments that can help affected women manage their pain and live healthier, happier lives. Some include changes in diet and lifestyle, physiotherapy, and acupuncture. Other options include painkillers, scripted medications, and surgery to remove endometrial tissue. In some severe cases a hysterectomy may be recommended, but this is still no guarantee that symptoms will ease.

Support is widely available for people living with endometriosis. See the resources at QENDO, the Pelvic Pain Foundation of Australia, EndoActive and Endometriosis Australia.