Endometriosis: the facts

Health agenda

Endometriosis: the facts

Updated August 2023 | 6 min read
Contributor Dr Joseph Sgroi, obstetrician, fertility specialist and gynaecologist
Words by Nicola Conville

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.

Endometriosis is one of the most common gynaecological causes of chronic pelvic pain, affecting at least one in nine women and girls in Australia. But what is endometriosis and how is it diagnosed and treated?

Women have endometrial 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 on the ovaries, bowel and tissues lining the pelvis.

During menstruation, hormonal changes impact the misplaced endometrial cells, causing them to grow and form patches or lesions that can bleed and leak fluid. Over time, the endometrial-like tissue trapped in these areas will thicken and break down. This can cause:

  • severe pain during the menstrual cycle
  • inflammation
  • scarring
  • adhesions (where tissue binds the pelvic organs together)
  • fertility issues.

What are the symptoms of endometriosis?

Depending on the location of the stray endometrial tissue, symptoms of endometriosis can vary. Common endometriosis symptoms include:

  • painful, heavy periods
  • bleeding between periods
  • pelvic and/or lower back pain
  • discomfort with bowel movements
  • pain during sex
  • fertility issues.

The severity of the symptoms can also vary and may not necessarily indicate the degree or stage of the endometriosis. Some women have only a mild form of the condition, but can experience severe pain, while others may have severe endometriosis but are not affected by symptoms.

What causes endometriosis?

It’s not yet known what causes endometriosis, which can be frustrating for women who live with the disease. While there are some theories regarding the cause, none of them have been scientifically proven. The factors that may play a role in causing endometriosis include:

  • reverse, or retrograde, menstruation, where endometrial tissue and/or menstrual fluid flows backwards into the fallopian tubes or abdomen instead of exiting the body during your period
  • a surgical procedure, like a C-section or hysterectomy, causing endometrial cells to attach to other areas of the body
  • the blood or lymphatic systems transporting endometrial tissues to other areas of the body
  • an immune system disorder that allows endometrial tissue to grow outside of the uterus
  • family history or genetics, as endometriosis appears to affect some families more than others.

According to Jean Hailes for Women's Health, other potential factors include:

  • starting your first period before 11 years of age
  • heavy periods, and periods that last longer than five days
  • shorter cycles between periods (less than 27 days)
  • having your first pregnancy at an older age
  • low body weight
  • alcohol consumption.

How is endometriosis diagnosed?

For some women, getting a diagnosis can take a long time – an average of seven years in Australia. This could be because women – and their doctors, if they report their concerns – initially think the pain and symptoms are part of premenstrual syndrome (PMS), ovarian cysts or irritable bowel syndrome (IBS).

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.

Early diagnosis, however, is important in reducing long-term potential impacts like daily chronic pain and infertility.

The most reliable method of diagnosing endometriosis is with laparoscopy, or keyhole surgery, and the biopsy of lesions. While surgery may seem like an extreme method of diagnosis, it can allow for the surgeon to diagnose and treat the endometriosis at the same time.

So, 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.

And if you’re diagnosed with endometriosis, it's important to schedule regular gynaecological exams, so any changes in the condition can be monitored.

How is endometriosis treated?

The management and treatment of endometriosis and its symptoms can be a journey that looks different for everyone.

Laparoscopic surgery with the aim of either cutting out the lesions or destroying them with energy, has been shown to be beneficial in treating pain and fertility issues caused by endometriosis.

Non-surgical treatments include anti-inflammatory medication, contraceptives and hormone therapy.

“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.

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

In recognition of the impact that endometriosis has on women living with the disease, the Australian Government announced in the 2022 Federal Budget they will be establishing specialised endometriosis and pelvic pain clinics in every state and territory to improve endometriosis diagnosis, care and treatment.

Does endometriosis affect fertility?

Around 30% of women with endometriosis have problems getting pregnant, reports Jean Hailes for Women’s Health. Endometriosis can affect fertility due to:

  • scarring of the fallopian tubes, pelvic tissue and ovaries
  • blockage of the fallopian tubes, preventing the embryo from implanting in the wall of the uterus
  • problems with egg quality.

If you have endometriosis and want to have children, there are treatments to help you improve your chances of conceiving.

Dr Sgroi says you may need laparoscopic 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.

Living with endometriosis

Lucy Stephenson, a 39-year-old mum of two, 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. Lucy’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 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,” Lucy says.

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

A convenient way to access a GP

Our partnership with GP2U, an online video GP service, makes it easier for eligible members to access telehealth services. All HCF members with health cover can access a standard GP consultation (up to 10 minutes) for a fee of $50.

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