5 things every woman should know about endometriosis

Most people who menstruate have experienced the cramping and chocolate cravings that come with having their period each month. But, for 190 million people across the globe, ‘period pain’ is a symptom of something far more serious.

Endometriosis.

Endometriosis is a common condition affecting one in seven Aussie women, girls and those who are gender diverse. Even more alarming, many people don’t even know they have endometriosis, because they put their pelvic discomfort down to period pain.  

It can take on average seven years for those living with endometriosis to be diagnosed. 

So what do you need to know about endometriosis and how do you know if you should seek medical help? 

Related: How to perform a self-examination for breast cancer

Endometriosis is a condition where tissue (called the endometrium) similar to that which lines the uterus starts growing elsewhere in the body, most commonly in the pelvis. 

Around the time of your period, hormones are released which break down the tissue in the uterus so it can leave the body as menstruation. However when the endometrium growing outside the uterus breaks down, it has nowhere to go. It remains in your pelvic cavity, which, over time, can lead to inflammation, scarring, cysts, and infertility.

What are the impacts of endometriosis?

Endometriosis can take a toll on your physical, mental, and financial wellbeing. The pain and discomfort it causes can be debilitating, often making it hard to go about your daily life.

When you're not feeling your best, it affects more than just your body – it impacts your overall quality of life, including your emotional health and wellbeing. In fact, an Australian study found that the overall cost of endometriosis could be as high as $30,900 per person, with the majority of that due to lost productivity.   

At its most serious, endometriosis can cause infertility. It’s estimated that around one in three people with the condition have difficulty conceiving, but it’s important to remember that treatment options are available and it may still be possible to get pregnant.  

The most common signs of endometriosis include painful periods, pelvic pain and pain during or after sex. Some people report feeling pain in their thighs or legs during ovulation. Sufferers may also experience pain when using their bowels and bladder, as well as nausea and lethargy.

There is typically a delay of seven years between the onset of the condition and diagnosis, with most people only being diagnosed when they seek help for fertility issues or an unrelated matter. General Practitioner and nib Group Medical Advisor, Dr Hamish Black, says this may be as people normalise the pain. 

“Many people put that pain down to period pain. One major concern with endometriosis is that it can lead to infertility, so if you’re noticing new symptoms or have ongoing concerns, it’s important to get them checked out. You don’t have to accept living with pain. Talk to your healthcare provider about your symptoms,” says Hamish.

There is no known cause of endometriosis. It’s reported that family history plays a role, and people who have a close relative with endometriosis are seven to 10 times more likely to get endometriosis. 

It's also been suggested that immune system disorders can play a role, in that the body won’t recognise and eliminate endometrium cells outside of the uterus. 

Another possible cause is retrograde menstruation which is when some of the menstrual blood flows backwards into the pelvic cavity. Endometrial tissue in the blood may then continue to grow outside of the uterus.  

Other factors that might play a role include: 

• Starting your periods at a young age (before you’re 11) 

• Having shorter menstrual cycles 

• Experiencing heavy or prolonged periods 

• Being older at your first pregnancy 

• Low body weight 

• Alcohol consumption

There is no cure yet for endometriosis, however symptoms can be treated. You’ll likely be treated by a range of different healthcare professionals which may include your GP and  surgeons and other complementary providers like psychologists or physiotherapists. 

Treating endometriosis requires a holistic health approach. To support people living with endometriosis, the Australian Government is introducing endometriosis and pelvic pain clinics across Australia to improve access to treatment options and services.

Pain management

You may decide with your GP to simply manage the pain with a non-inflammatory medication such as ibuprofen. If you’re an nib member, use our Find a Provider tool to search for your closest GP.

Hormone treatments

Since oestrogen promotes the growth and shedding of endometriosis tissue, hormonal therapies like the contraceptive pill or gonadotropin-releasing hormone (GnRH) can help reduce oestrogen levels and relieve some symptoms.

Surgery

Laparoscopy is keyhole surgery that can be used to both diagnose and treat endometriosis. It’s an option for people who want to conceive or for those whose pain is so great that hormonal treatments are not effective. In some severe cases, your doctor might suggest a hysterectomy to remove the uterus.

There isn’t one treatment that works for everyone, so talk about your goals and symptoms with your doctor to find the right treatment for you. For example, someone who wants to conceive might choose surgery, while others might prefer simple pain relief. 

Allied treatments

Some people experience relief through complementary therapies including massage, physiotherapy and psychology. At nib, we have a number of Extras covers that pay benefits towards these types of health services. And, if you’re already an nib member you’ll have access to our First Choice network of allied health professionals who have promised to deliver quality care and value for money for nib members. You can check exactly what your policy covers using your member account or the nib App.

Not with nib? You can get a quote for Extras cover in minutes online.

Diagnosing endometriosis can be difficult, however it’s important to tell your doctor if that’s what you’re concerned about.

As with any health concern, your GP should be your first port of call. Diagnosing endometriosis can be difficult, but don’t be afraid to tell your doctor if that’s what you’re concerned about. 

“It’s always important to state your concern when you go to the doctor and tell them what diagnosis you are worried you have. If you are wanting a referral for an opinion from a gynaecologist then you should state that too,” says Hamish. 

Living with pain can take a toll on your mental health. If endometriosis is impacting your mental wellbeing, talk to your GP. They can connect you with a range of mental health supports and services. 

If you or someone you know needs help, please call: 

• Lifeline 13 11 14  

• Beyond Blue 1300 22 4636 

Do I have to visit a doctor in person?

If you need comfort and privacy while dealing with endometriosis pain, you can opt for telehealth consultations through our partner hub.health with direct access to medical professionals, 8am to 8pm AEST/AEDT. 

What happens at my appointment?

Your doctor will most likely want to rule out more serious illnesses before investigating endometriosis.  

"If you’ve experienced a change in your menstrual cycle or pelvic pain, your doctor would do what we call a ‘differential diagnosis’. What that means is that if someone came in with those symptoms, you’d want to exclude other problems first, particularly cervical or uterine cancer,” says Hamish. 

As it’s not always possible to diagnose endometriosis during an internal pelvic exam, your doctor might refer you to a gynaecologist.

How do I choose a specialist?

After some initial research you might find a gynaecologist who has better patient reviews or offers shorter wait times than the one your GP included on your original referral.  

Regardless of which specialist your GP refers you to, you can visit the specialist of your choice, as long as they are in the same specialty field. 

For more information on open referrals, check out our article: Can I take my referral to any specialist?

Does my health insurance cover gynecology services? Check what you’re covered for

If you’re heading to your GP for a check-up, it could be a good opportunity to find out what other examinations you might be due for.

• If you’re aged between 20-29, find out more with our article Health checks in your 20s.

• If you’re aged between 30-39, we’ve put together this article: Health checks in your 30s.

• Aged 40-49? There’s a dedicated article on The Check Up, Health checks in your 40s.

• And, for the young-at-hearters (or those of us between 50-59), check out Health checks in your 50s.

The information on this page is general information and should not be used to diagnose or treat a health problem or disease. Do not use the information found on this page as a substitute for professional health care advice. Any information you find on this page or on external sites which are linked to on this page should be verified with your professional healthcare provider.