ENDOMETRIOSIS: SYMPTOMS, DIAGNOSIS AND TREATMENT

Updated April 2024 | 4 min read
Expert contributors Dr Ingrid Rowlands, University of Queensland School of Public Health researcher, Dr Erin Nesbitt-Hawes, obstetrician gynaecologist
Words by Carolyn Tate

Severely painful periods, gastrointestinal problems, and pain during sex are among the most common endometriosis symptoms.

Endometriosis affects at least one in nine women and girls^*. The disorder occurs when tissue like that found in the lining of the uterus grows outside the uterus in other parts of the body – including on nearby pelvic organs such as the bladder, bowel and reproductive organs like the ovaries and fallopian tubes.

A common gynaecological condition, endometriosis can cause painful menstrual periods, heavy menstrual bleeding, pelvic area pain and sometimes infertility. Common symptoms can appear any time from puberty.

“Endometriosis has been under-recognised in both the social and medical communities,” says University of Queensland School of Public Health researcher, Dr Ingrid Rowlands. “Many people do not know what it is.

“Doctors find it challenging to treat and manage patients who present with symptoms…A low level of understanding has contributed to a lack of knowledge and research into the condition.”

While there’s no known cure for endometriosis, treatments are available to ease symptoms and to help with the fertility challenges that can accompany the disease. See your doctor if you experience symptoms and ask about your treatment options.

Common endometriosis symptoms

Symptoms of endometriosis include:

• painful menstrual cycles
• pain during sex
• pelvic pain (like period pain)
• pain during ovulation
• pain in the lower back and thighs
• pain during bowel movements
• pain when urinating
• trouble conceiving
• nausea and exhaustion.

In some rare cases, women with endometriosis will experience no noticeable symptoms at all. Symptoms of endometriosis can also be caused by a range of other disorders, so it’s important to see a doctor to help investigate the cause, if you’re experiencing them.

When does period pain become a sign of endometriosis?

“Endometriosis can be present and diagnosed in adolescents and teenagers after periods start, and is suspected if girls are having debilitating period pain requiring days off school,” says Dr Erin Nesbitt-Hawes, an obstetrician-gynaecologist and clinical advisory committee member of Endometriosis Australia.

Leading Australian healthcare organisation Jean Hailes for Women’s Health recommends women and teenage girls should seek medical assistance if:

• they’re missing work, school or recreational activities
• pain relief medicines aren’t helping
• their pain is so bad it requires bed rest
• symptoms are getting worse
• they feel upset by their symptoms
• their ability to cope mentally is affected.

Dr Nesbitt-Hawes says it’s important not to dismiss debilitating pain.

“Women and girls who are experiencing pelvic pain which interferes with their ability to conduct day-to-day activities should be assured that this isn’t ‘normal’,” she says, adding that those experiencing symptoms should see their doctor so that symptoms might be better managed.

“Sometimes I was on the bathroom floor vomiting because the pain was so bad,” says 29-year-old Sydney school teacher, Ann-Maree. “My partner would say, ‘this is ridiculous, you can’t go on like this’, and drag me to an emergency room.”

Endometriosis and pain during sex

Painful sex (dyspareunia) can be caused by endometriosis when it affects tissue behind the uterus at the top of the vagina, or muscles in the pelvic wall. Women with dyspareunia may try to avoid or limit sexual activity due to pain, or fear of pain.

A study published in the International Journal of Environmental Research and Public Health looked at the relationship between endometriosis-related symptoms and sex – 80% of women surveyed reported they believed their endometriosis symptoms have had a negative impact on their sex life and 68% reported avoiding sexual intercourse due to their endometriosis. 

Some women with endometriosis (and their partners) find ways to manage their personal experience of dyspareunia, including trying different sexual positions, sex at different times of their monthly cycle and physiotherapy.

Resources are available to support women living with endometriosis. These include expertise from QENDO, the Pelvic Pain Foundation of Australia, EndoActive and Endometriosis Australia.

How is endometriosis diagnosed?

The only conclusive way to diagnose endometriosis is via laparoscopy, a procedure that allows a surgeon to see inside the abdomen. During the operation a thin tube (a laparoscope) is inserted through a small incision made near the navel. A camera is used to see if there’s endometrial tissue outside the uterus. If endometrial tissue is found, a sample is often taken for testing to confirm the diagnosis.

Dr Nesbitt-Hawes says that because this diagnostic surgery is seen as a big step, especially if symptoms are mild, women will often live for many years with the disease only to be diagnosed later in life.

“It’s less common for young women and girls to have a laparoscopy, so the diagnosis is often clinical - based on signs and symptoms - rather than sight of the condition itself,” she says.

Early diagnosis and treatment can save women from unnecessary pain, says Dr Nesbitt-Hawes.

“By initiating treatment earlier, we may be able to prevent the cycle of the chronic pelvic pain condition that often goes hand in hand with endometriosis,” she says. “For women who suffer with pain for long periods of time, we start to see their pelvic floor muscles become involved, becoming over-contracted and tender, and causing pain in their own right.”

Treatment for endometriosis 

There’s a range of treatment options for managing endometriosis symptoms says Dr Nesbitt-Hawes: “Pain relief strategies, medications, mindfulness, exercise, surgery, physiotherapy, acupuncture and diet. Working with doctors and allied health practitioners who understand endometriosis is important.”

Need to make an appointment with a GP? 

Our partnership with GP2U, an online video GP service, makes it easier for eligible members to access telehealth services. All HCF members with health cover can access a standard GP consultation (up to 10 minutes) for a fee of $50. See hcf.com.au/gp2u for more information. 

Thank you to Endometriosis Australia for its generous contribution to this article.