Ask the experts: Endometriosis

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Deborah Bush of Endometriosis New Zealand explains a common — and commonly misunderstood — condition.

What exactly is endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus (the endometrium) is found growing in places outside the uterus where it shouldn’t be. This tissue forms lesions, nodules and cysts which, in the early stages, is usually minimal. Endometriosis is commonly found on and around the organs of the pelvis, the pelvic side walls, ovaries, bowel, pelvic ligaments and the bladder. It has been reported in other parts of the body, too, but this is rare.

What are the main symptoms?

The symptoms of endometriosis can start from a girl’s very first period or in her teens. Women and girls with endometriosis are often miserably aware of the painful and life altering symptoms which include pain with periods (dysmenorrhoea), bowel problems such as bloating, diarrhoea, constipation and/or painful bowel movements, pain with intercourse, subfertility or infertility, constant tiredness, pain in other places such as the lower back, pain at other times in the month (eg. with ovulation), abnormal menstrual bleeding, bladder troubles and pre-menstrual syndrome (PMS), which can make you feel moody, irritable and emotional. Discomfort with a period is often normal but distress is never normal. If these symptoms affect your lifestyle and stop you doing everyday things, it’s important to find out why.

What causes endometriosis?

We don’t know for sure what causes it. Thankfully, researchers and medical professionals are getting closer to finding answers. We know it runs in families (but we don’t know the exact genes yet), and other factors such as environmental and immunological are thought to contribute to the cause.

Why is it so tricky to diagnose?

Endometriosis can be tricky to diagnose because a laparoscopy (key-hole surgery) is required to view the pelvis and confirm the disease. However, doctors who understand endometriosis and have expertise in treating the condition are highly likely to suspect endometriosis by listening to a patient’s story and taking other factors (eg. family history) into account. A pelvic examination is often performed. Tests and scans are often recommended which helps build a picture about what’s going on. These results are often normal and can leave women and girls feeling that ‘it’s all in their head’. Unfortunately, they are sometimes even told this. It’s important to understand that these are not diagnostic tools for endometriosis. Keep investigating to find the answers and the solutions.

How is endometriosis treated or managed?

Usually, treatment involves a multi-disciplinary approach (a team of health professionals) including laparoscopic surgery, a medical management plan if it’s appropriate and self-help practices.

Laparoscopic surgery is performed in hospital under general anaesthetic. The extent of endometriosis is usually described in stages as mild, moderate or severe, however, the severity of the symptoms doesn’t relate to the stage of the disease. It can take several weeks or months to feel better.

Medical management such as hormone treatments (like the contraceptive pill) and pain relief medications are often prescribed to reduce the symptoms first, particularly in young women. Other hormone treatments aim to reduce the growth of endometriosis. An intrauterine contraceptive device is sometimes placed inside the uterus at the same time as the surgery, which can reduce heavy bleeding and other symptoms.

What are the links between endometriosis and fertility?

Fertility is decreased in about three or four in every 10 women with endometriosis. When endometriosis is severe the ovaries, pelvic organs and tubes are often involved and the anatomy can be distorted. However, fertility can be affected in women with mild endometriosis, too.

Laparoscopic surgery to remove the endometriosis improves fertility for many women but some will still need fertility treatments such as IVF. Prescribed drugs which treat endometriosis do not treat fertility.

Are there any foods that can help or hinder?

Bowel-related symptoms can be eased by understanding which foods worsen symptoms and irritate the gut. Sugars that occur naturally in foods (FODMAPs) are common irritants when they are poorly absorbed. These include fruits high in fructose (eg. apples and pears), coconut and honey, lactose (eg. dairy foods), fructans (eg. onions and wheat products), raffinose and galactans (eg. vegetables such as broccoli and Brussels sprouts) and polyols (eg. artificial sweeteners). Click here for more on FODMAPs.

Women and girls with endometriosis can live well by understanding the condition, treating it early, accessing the best treatment and management possible and practising self-help. Endometriosis New Zealand (ENZ) provides programmes and services for individuals, schools, communities, hospitals and workplaces. ENZ works to change health outcomes for more than 100,000 girls and women in New Zealand with endometriosis and those with pelvic pain.