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Endometriosis: the facts

Little is known about what causes the painful gynaecological disease, endometriosis. We explain what it is, question why it can be hard to get a diagnosis and suggest what might reduce painful symptoms.

Nicola Conville
July 2018

Endometriosis is one of the most common gynaecological causes of chronic pelvic pain, occurring in 1 in 10 women in Australia. But what is it?

Women have endometrium cells that line their uterus. The body usually sheds these with blood as part of a menstrual cycle. In women with endometriosis, similar cells grow outside the uterus, most commonly around the pelvis. These cells can become trapped and may cause inflammation, pain and scarring.

Symptoms of endometriosis are varied and may include:

  • pain during menstruation, sex or while going to the toilet
  • nausea
  • lethargy.

For some women, getting a diagnosis can take years. This could be because they – and their doctor, if they report their concerns – initially think the pain and symptoms are part of premenstrual syndrome (PMS).

Others simply don’t seek help until their condition becomes debilitating, delaying seeking help until “it’s impacting significantly on their lives, such as being unable to work because of the pain, experiencing very heavy menstrual bleeding or having problems conceiving,” says Dr Joseph Sgroi, an obstetrician, fertility specialist and gynaecologist.

Sometimes the condition may not present any symptoms at all, leaving the woman unaware anything is wrong.

“Some women may not have symptoms of pain, so the endometriosis is only discovered when they present with fertility problems,” he says.

It’s not known what causes endometriosis, which can be frustrating for women who live with it. Some factors could include:

  • ‘Retrograde menstruation’ (when some of the menstrual fluid flows backwards into the fallopian tubes)
  • Genetics: you’re more likely to have it if your family members have it.

Life with endometriosis 

Lucy Stephenson, a 39-year-old mum of 2, was diagnosed with endometriosis 11 years ago.

“I definitely had it for many years before that, as I have always suffered with very heavy, painful periods,” she says. Stephenson’s symptoms also included short menstrual cycles, pain during sex, lower back pain, bloating and fatigue. Endometriosis started to affect her mood, and she experienced anxiety and was often tearful.

Over the years she has tried many different treatments, from medications to surgery. She believes focusing on a healthy diet has improved her symptoms.

When she was diagnosed in her late 20s, her gynaecologist suggested she start trying for a family as soon as possible. “Even though my husband and I were young at the time, we knew we both wanted children, so we decided to just see what might happen,” Stephenson says.

They were able to have 2 children without any problems conceiving, “so we were very lucky,” she says.

Fertility issues

Endometriosis can affect fertility by damaging or blocking the fallopian tubes and ovaries. Abound 30% of women with endometriosis have problems getting pregnant, reports Jean Hailes for Women’s Health.

If you have endometriosis and want to have children, Dr Sgroi says you may need keyhole surgery to confirm the diagnosis and treat the endometriosis.

“It will not only improve pain symptoms but also improve the prospect of future pregnancy.”

While pregnancy can slow or stop the growth of endometriosis, it doesn’t stop it from recurring after childbirth. After birth, it’s common for women to have a recurrence of symptoms after a few years, although symptoms often ease after menopause.

Endometriosis diagnosis and treatment

Early diagnosis can reduce long-term impacts, says Endometriosis Australia.

If you’re experiencing pelvic pain, especially if it’s impacting on your quality of life, see your GP, who may refer you to a gynaecologist. A pelvic exam or ultrasound can help pick up any issues.

“Non-steroidal anti-inflammatories such as Ponstan help reduce inflammation. The combined oral contraceptive pill, or using a progesterone treatment such as the Mirena IUD, can also dampen down that inflammatory response and help manage the pain,” says Dr Sgroi.

Laparoscopy or keyhole surgery can be used to remove endometrial deposits (the tissues found growing outside the uterus).

Some women find exercise and relaxation case ease the stress and pain associated with endometriosis.

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