What is endometriosis?

Endometriosis is when some of the cells similar to those that line the uterus (womb), called the endometrium, grow in other parts of the body. They usually grow in the pelvis, but can move to almost any part of the body.

Even though they are not in the uterus, the cells still respond to messages from the ovaries. The endometriosis tissue gets full every month and then bleeds when the woman has a period. Over time, this process can lead to inflammation and scarring, and can cause organs to stick together in places (known as adhesions).

Endometriosis is a progressive, chronic condition. It can be very painful, it can affect fertility and it can prevent women from participating fully in education, work or sporting activities. About 1 in 9 women in Australia develop endometriosis by their 40s, and the condition causes tens of thousands of hospitalisations every year.

While there is no cure for endometriosis and it lasts until menopause or beyond, there are effective treatments that may relieve the symptoms.

What are the symptoms of endometriosis?

Each woman with endometriosis will experience different symptoms. How severe the symptoms are does not relate to how serious the disease is, but where the endometriosis is.

Common symptoms include:

• abdominal (tummy) or pelvic pain before and during a period, during or after sex or when going to the toilet. The pain can be felt in the thigh or leg and may get worse over time. For some women, the pain is so severe they cannot participate in education, work or sport
• heavy periods or irregular bleeding, sometimes with clots. Bleeding for longer than normal or before a period is due can also signal endometriosis
• bleeding from the bladder or bowel, or changes in urination or bowel movements, such as needing to urinate more frequently
• feeling bloated, with or without pain
• being tired, especially around the time of your period
• having anxiety or depression related to the pain
• not being able to get pregnant (infertility)

However, not everyone with endometriosis will experience symptoms.

What causes endometriosis?

The causes of endometriosis are not known, but there are some things that put women at greater risk.

• Retrograde menstruation. This is when, instead of menstrual (period) blood flowing out of the body as usual, some travels backwards along the fallopian tubes and into the pelvis. This blood can contain cells from the endometrium. In some women, these endometrial cells stick onto the surfaces of pelvic organs and start growing.
• Normal pelvic tissue can turn into endometriosis. This is called metaplasia.
• Family history. Women who have a close relative with endometriosis are up to 7 to 10 times more likely to develop the condition

Other possible contributing factors for endometriosis include:

• long and heavy periods
• frequent periods or short cycles
• starting your period before 11
• having your first pregnancy when you are older
• problems with the immune system
• low body weight
• alcohol use

How is endometriosis diagnosed?

Many women find out they have endometriosis because they are seeing a doctor due to infertility, or when it is found during an operation for something else. Unfortunately, endometriosis is often missed and it can take several years to get a diagnosis — the average is about 7 years.

To diagnose endometriosis, your doctor will probably ask about your symptoms and periods.

The only way to confirm endometriosis is to have a laparoscopy, which is a type of surgery that allows doctors to look for endometriosis tissue in the abdomen, and a biopsy, where a small sample of tissue is taken to examine in the laboratory. There is also increasing research that specialised ultrasound can help make a reliable diagnosis in many but not all cases.

There are 4 stages or grades of endometriosis, depending how severe the disease is:

• Stage/grade I (mild): there are small patches of endometriosis scattered around inside the pelvis.
• Stage/grade 2 and 3 (moderate): the disease is more widespread and can be found on the ovaries and other parts of the pelvis. There may also be significant scarring and adhesions.
• Stage/grade 4 (severe): the disease has spread to most of the pelvic organs.

When should I see my doctor?

If you suspect you have endometriosis, talk to your doctor about your symptoms.

The Raising Awareness Tool for Endometriosis (RATE) has been developed to help you and your health professionals identify and assess endometriosis and related symptoms. This may help you reach a faster diagnosis and get more effective treatment.

How is endometriosis treated?

If you have endometriosis, you will probably be cared for by a gynaecologist.

Endometriosis can usually be treated with medicines, surgery and complementary treatments such as physiotherapy and psychology. Treatment will depend on:

• your symptoms
• the severity of your endometriosis
• whether you want to become pregnant

Medicines for endometriosis include hormone-based treatments like the pill or an implant or IUD and pain relief medicine. Hormone treatments can reduce pain and reduce the growth of endometrial cells. However, they work only as long as you take them, so the endometriosis may come back.

Surgical treatment aims to remove as much of the endometriosis as possible. There are several options, including laparoscopic surgery where a small cut is made in the abdomen to allow examination and removal of the endometrial tissue. Surgery may also be combined with medicines. In very severe cases, a hysterectomy to remove the whole womb might be suggested.

A physiotherapist can help with bladder and bowel problems and a clinical psychologist can help you to manage chronic pain.

Although most women with endometriosis become pregnant without medical assistance, about 1 in 3 women have trouble with fertility. Fertility such as IVF can help most of these women.

Even if the endometriosis is treated, pain may not disappear. The endometriosis may come back. So make sure you talk to your doctor about the pros and cons of any treatment they are suggesting. Healthdirect's Question Builder can help you remember what to ask.

If you are living with endometriosis, make sure you get plenty of sleep, exercise regularly and reduce stress as much as possible.

Visit the Jean Hailes for Women's Health website for more information