Our specialists answer your top 10 endometriosis questions

Endometriosis affects one in 10 women, making it one of the most common health conditions in Australia. While some women experience no symptoms, for others it has a debilitating impact on their daily function and quality of life.

If you suspect you or someone you love may have endometriosis, or you’re one of the 10 per cent of women living with it, our endometriosis specialists have provided answers to the top 10 questions people often ask about the condition.

1. What causes endometriosis?

Endometriosis is a condition in which cells like those that line the uterus (womb) grow in other parts of your body – most commonly in the pelvis. It is a chronic condition which can affect your physical and mental wellbeing, as well as your ability to participate fully in everyday life.

The cause of endometriosis isn’t completely understood, but some things are known to put you at greater risk for developing it. These include:

• Retrograde (backwards) menstruation – this is when menstrual blood, which contains endometrial cells, flows back along the fallopian tubes and into the pelvis. In some women, these cells stick onto the pelvic organs and start growing.
• Family history – you are up to 7-10 times more likely to develop endometriosis if you have a close relative with the condition.
• Metaplasia – this involves normal pelvic tissue turning into endometriosis.

Other factors that may contribute to developing endometriosis include:

• having your first pregnancy when you’re older
• heavy bleeding during periods, or periods lasting longer than five days
• frequent periods or short cycles
• starting your period before age 11
• problems with the immune system
• low body weight
• alcohol use.

2. Where does endometriosis occur?

Endometriosis most commonly affects the pelvic organs, including the ovaries, fallopian tubes, the area between the vagina and rectum, and the lining of the pelvis (peritoneum). Less commonly, it can affect the bowel or bladder, and rarely the lungs or diaphragm.

3. What are the symptoms of endometriosis?

Endometriosis symptoms vary and some women have no symptoms at all. However, the most common symptoms are:

• Pain – including pelvic pain, lower back and thigh pain, painful periods and painful sex
• Bladder and bowel issues – including constipation, bloating or diarrhoea and pain when using your bowel or bladder
• Infertility – 30% of sufferers have trouble getting pregnant
• Abnormal bleeding – You may experience occasional heavy period or intermenstrual bleeding (bleeding between period)

4. Why does endometriosis cause pain?

In endometriosis, the endometrial-like tissue acts just like the lining of your uterus. It responds to the same hormones, which means it grows and bleeds with each menstrual cycle. Surrounding tissues can become inflamed, irritated, and scarred, leading to pain. The scar tissue can also form bands of fibrous tissue (called adhesions) that cause pelvic organs to stick to each other.

It’s important to note that pain severity is not a good indicator of the extent of your condition. It’s possible to experience severe, debilitating pain with mild endometriosis, and little to no pain with advanced endometriosis.

Other conditions can also cause pelvic pain, including pelvic inflammatory disease, adenomyosis and ovarian cysts. Endometriosis symptoms may also mimic those of bowel conditions, like irritable bowel syndrome.

Learn more about conditions that cause similar symptoms to endometriosis here.

Other conditions can also accompany endometriosis and require management. This is why it’s important to seek advice about your symptoms from an endometriosis specialist.

Importantly, some women have experienced stigma or feel their symptoms have been brushed aside. Mild discomfort during your periods is not uncommon but see your doctor if you have bad period pain.

5. How is endometriosis diagnosed?

Getting an endometriosis diagnosis can be difficult, with many women waiting up to 10 years to discover the cause of their symptoms. Your road to diagnosis typically begins with your GP gathering a detailed medical history and conducting a physical exam. This helps to determine whether your symptoms point to endometriosis and to rule out other causes.

Further tests may include blood tests and imaging procedures. A specialised ultrasound and/or MRI (magnetic resonance imaging) scan can help diagnose endometrioma and deep infiltrative endometriosis.

Laparoscopy – a surgical procedure where a small telescope is inserted through your belly button to view the pelvic organs – is the gold standard for a definitive diagnosis.

Your GP may refer you to a gynaecologist or surgeon specialising in endometriosis to help you get the right diagnosis.

6. Can endometriosis be cured?

As yet, no cure has been found for endometriosis. However, it can be managed with the right treatment.

7. How is endometriosis treated?

Medication and surgery, or a combination of both, are the mainstays of endometriosis treatment. Surgery can be used to diagnose the condition, relieve pain, and improve your fertility. Your surgeon may remove endometriosis, endometriomas (chocolate cysts) and adhesions.

Sometimes, other surgeon such as bowel or urology specialists will be involved if there is endometriosis affecting the bowel or bladder.

Your endometriosis specialist will discuss your options and provide advice to help you make an informed decision about surgery.

Read more about surgical options for endometriosis at Gold Coast Private Hospital here

Medications used to manage endometriosis include:

• Simple pain relievers – including paracetamol and non-steroidal anti-inflammatories
• Hormone therapies – your doctor may prescribe hormones to reduce the growth of endometriosis and/or reduce your symptoms. These may be delivered orally or through a device that sits in your uterus
• Other medications –  GnRH agonist to stop menstrual cycle sometimes may be used to manage endometriosis

Some women also find lifestyle changes and natural therapies provide symptomatic relief and improve their quality of life. These include:

• Eating a healthy diet – some women benefit from following the low FODMAP plan (although there is minimal evidence that diet affects endometriosis)
• Physical activity can help to ease pain – aim to get some exercise each day
• Getting enough quality sleep will help your immune system function at its best
• Finding ways to manage stress – such as gentle yoga, relaxation exercises or mindfulness.

Pelvic floor exercises and psychological counselling can also help.

8. How are infertility and endometriosis linked?

Women with endometriosis can have children without difficulty but getting pregnant can be a problem. 1 in 3 women with endometriosis have trouble getting pregnant. Endometriosis can affect your fertility in several ways, including through scarring of tubes/ovaries, inflammation, and difficulties with egg implantation or quality of eggs.

If you’re experiencing fertility issues, surgical treatment is more appropriate because hormonal therapy isn’t recommended. Your endometriosis specialist can provide tailored advice for your situation.

Gold Coast Private Hospital also has IVF services should you need them.

9. When should I seek help?

See your doctor if period pain is impacting your everyday life, such as your ability to work, study, or enjoy your usual recreational activities. You should also seek help if your symptoms are worsening, your usual medications aren’t as effective as they used to be, or your symptoms are causing you concern.

If you’re trying for a baby, you should seek help if things aren’t going to plan.

10. What should I do next?

See your GP, who can refer you to an endometriosis specialist. At Gold Coast Private, we place you at the centre of your care.

We're the Gold Coast's first Centre of Excellence in Multidisciplinary Endometriosis Care. This means we work with world-leading endometriosis surgeons who provide high quality care in processes and outcomes, from diagnosis to the crucial post-operative care stage of treatment.

And with facilities like state-of-the-art operating theatres (including robots), onsite imaging and private dining, rest assured that your experience with us will reflect the standards you expect from private care.

Find out more about the Endometriosis services available at Gold Coast Private Hospital.
 

References:

https://www.healthdirect.gov.au/endometriosis

https://www.jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes