Everything you need to know about endometriosis

Endometriosis affects one in seven Australian women, yet many people still believe it’s just period pain. Here’s what to know about this chronic condition.

It’s an all-too-common scene: You’re lying in bed with period cramps so painful they make you nauseous;  you’re bloated, fatigued, frustrated and fed up.

This is a reality for millions of women around the world who suffer from endometriosis, a chronic condition associated with pain, heavy periods and, in severe cases, infertility.

Estimates suggest endometriosis affects approximately one in seven women in Australia; yet, despite its prevalence, it’s a condition that remains shrouded in mystery, misconceptions and myths.

We delve into endometriosis to sort fact from fiction and shed light on its common symptoms, causes and treatments, as well as what a diagnosis may mean for you and how to manage your symptoms.

On this page:

• What is endometriosis?
• Why does endometriosis cause pain and other symptoms?
• Who gets endometriosis?
• What are risk factors for endometriosis?
• Causes of endometriosis
• Endometriosis symptoms
• How is endometriosis diagnosed?
• What are the different types of endometriosis?
• Does endometriosis make you infertile?
• How is endometriosis treated?
• Endometriosis medication
• Does the oral contraceptive pill cure endometriosis?
• Does pregnancy cure endometriosis?
• Endometriosis vs adenomyosis: what’s the difference?
• The mental health impacts of endometriosis
• What is the best diet for endometriosis?

What is endometriosis?

Genea Fertility medical director Associate Professor Alex Polyakov says endometriosis is a chronic and often painful condition where tissue similar to the lining inside the uterus, called the endometrium, starts to grow outside the uterus.

“This aberrant tissue growth can occur on the ovaries, fallopian tubes, the outer surface of the uterus and on other organs within the pelvis or, in rare cases, anywhere in the abdominal cavity and beyond,” Assoc Prof Polyakov explains.

City Fertility specialist Associate Professor Michael Cooper OAM says the general definition of endometriosis doesn’t do justice to what is actually going on because, if it were that simple, one would be able to just remove those cells – and that would be the end of the story.

“But that doesn’t happen,” Assoc Prof Cooper says.

“A better way to think about (endometriosis) is that we’re probably dealing with an unknown inflammatory problem.”

LISTEN BELOW: Gynaecologist Dr Kate Tyson joins The House of Wellness radio team to discuss endometriosis symptoms to look out for and the latest research into the condition:

Why does endometriosis cause pain and other symptoms?

Unlike the endometrial tissue inside the uterus that sheds during menstruation, tissue growing outside the uterus cannot exit the body, Assoc Prof Polyakov explains.

“This leads to inflammation, pain and the formation of scar tissue,” he says.

“The cyclical nature of this tissue growth and breakdown outside the uterus, in response to hormonal changes in the menstrual cycle, can cause significant pain and other symptoms, which may vary in intensity.”

Who gets endometriosis?

Assoc Prof Polyakov says endometriosis primarily affects women in their reproductive years, but it can start as early as a girl’s first period and can persist until menopause and – in some cases – may continue even after menopause.

“It can affect any woman or girl of child-bearing age, regardless of race or ethnicity,” he says.

“The condition is most commonly diagnosed in women in their 30s and 40s, but the onset of symptoms can also occur in teenagers.”

 

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What are risk factors for endometriosis?

Assoc Prof Polyakov says risk factors can include never giving birth, starting your period at an early age, going through menopause at an older age, short menstrual cycles and higher levels of oestrogen in the body.

“Evidence suggests it (endometriosis) could run in families, implying a possible genetic component,” he says.

Causes of endometriosis

Put simply, Assoc Prof Cooper says, “we don’t know what endometriosis actually is and we don’t know what causes it,” but several theories exist.

Assoc Prof Polyakov says one leading theory is retrograde menstruation, where menstrual blood flows back through the fallopian tubes into the pelvic cavity instead of leaving the body.

“Other theories include hormonal influences, genetic predisposition, immune system disorders, and surgical scar implantation, where endometrial cells attach to a surgical incision,” Assoc Prof Polyakov says.

Assoc Prof Cooper adds that “exposure to ‘endocrine disruptors’ such as bisphenol A (BPA)” have also been implicated.

Endometriosis symptoms

Assoc Prof Cooper says the symptoms of endometriosis can range from none to severe and include pelvic pain, irregular menstrual bleeding (particularly bleeding before the periods are due),  abdominal bloating, and infertility.

“Pain can be aggravated by sexual intercourse and bowel or bladder movements,” he adds.

He says endometriosis can also mimic other conditions, such as irritable bowel syndrome or pelvic inflammatory disease, adding to the complexity of diagnosis.

How is endometriosis diagnosed?

Diagnosis is one of the biggest challenges when it comes to endometriosis.

Assoc Prof Cooper says the gold standard for diagnosis is laparoscopic surgery, a minimally invasive procedure allowing doctors to look inside the abdomen.

Some doctors may be reluctant to recommend this procedure to younger patients presenting with symptoms, or without first attempting to manage symptoms with less invasive treatments.

Depending on the severity of the condition, Assoc Prof Cooper says endometriosis can sometimes be picked up on ultrasound – particularly if endometriomas (ovarian cysts) are present.

Furthermore, painful periods – a hallmark symptom – are sometimes dismissed as a normal aspect of menstrual discomfort, further delaying diagnosis.

What are the different types of endometriosis?

Endometriosis is classified into four stages, which are determined based on the location, amount, depth and size of the endometrial implants, Assoc Prof Polyakov says.

• Stage I (minimal): Characterised by small lesions or wounds and superficial endometrial implants on the ovary.
• Stage II (mild): Involves light lesions and superficial implants on an ovary and the pelvic lining.
• Stage III (moderate): Includes deep implants on the ovary and pelvic lining, along with more lesions.
• Stage IV (severe): The most advanced stage, with deep implants on the pelvic lining and ovaries, possibly involving lesions on the fallopian tubes and bowel.

In rare cases, endometriosis can cause bowel obstructions or perforations, or significantly distort anatomy, requiring surgical intervention.

Assoc Prof Cooper emphasises that it’s crucial to understand that the stage of endometriosis does not directly correlate with the level of pain experienced or the presence of symptoms.

“Some may experience debilitating pain, while others might have no noticeable symptoms,” Assoc Prof Cooper says.

Does endometriosis make you infertile?

Infertility or difficulty conceiving is one of the most well-documented complications of severe endometriosis.

Endometriosis can affect fertility in several ways, including distortion of the pelvic anatomy, inflammation, formation of scar tissue (adhesions) that can impair the function of reproductive organs, and interference with the implantation of the embryo.

“About one-third to one-half of women with the condition have difficulty getting pregnant,” Assoc Prof Cooper says.

How is endometriosis treated?

Treatment for endometriosis may involve pain relief medications, hormone therapy to slow the growth of endometrial tissue, and surgical options to remove endometrial implants.

Assoc Prof Polyakov says the choice of treatment depends on the severity of symptoms, whether the woman wishes to become pregnant, and her age.

“In severe cases, a hysterectomy may be recommended,” he says.

 

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Endometriosis medication

Endometriosis medications typically fall into two main categories: over-the-counter pain relievers and hormone therapies.

Over-the-counter pain relievers, including  non-steroidal anti-inflammatory drugs such as ibuprofen and naproxen, are commonly used to reduce pain and inflammation associated with endometriosis.

Hormone therapies – which include the oral contraceptive pill, progestin therapy and gonadotropin-releasing hormone (GnRH) agonists and antagonists – aim to reduce or eliminate menstruation, thereby suppressing the growth of endometrial tissue.

“Drugs serve to suppress the symptoms of the disease but do not remove the problem, and most have significant side effects,” Assoc Prof Cooper says.

In addition to these medications, women with endometriosis may now have access to Ryego, a groundbreaking hormonal treatment that represents a significant advancement in managing the condition.

Recently approved by the Therapeutic Goods Administration, this medication has ushered in a new era of hope for women battling the condition.

Does the oral contraceptive pill cure endometriosis?

The oral contraceptive and other hormonal treatments may assist with symptoms, but they don’t remove or get rid of existing disease, Assoc Prof Cooper reiterates.

“If you stop ovulating, due to pregnancy, going through the menopause or taking the oral contraceptive pill, the high concentration of hormones active within the pelvis is substantially reduced,” Assoc Prof Cooper explains.

“These lower levels have less effect on the endometriosis and hence many people notice some relief from their symptoms.”

Does pregnancy cure endometriosis?

Pregnancy is often heralded as a temporary reprieve from endometriosis symptoms.

Assoc Prof Cooper explains this is due to hormonal changes during pregnancy that can suppress the condition, offering relief to some women.

However, it’s not a definitive cure, and symptoms may return postpartum.

Endometriosis vs adenomyosis: what’s the difference?

Endometriosis involves the growth of endometrial-like tissue outside the uterus; conversely, adenomyosis occurs when endometrial tissue grows into the muscular wall of the uterus, Assoc Prof Polyakov explains.

“Both conditions can cause heavy periods and pelvic pain, but they are distinct conditions requiring different treatment approaches,” he says.

Despite their differences, Assoc Prof Polyakov says it’s not uncommon for these conditions to occur simultaneously.

“Mild to moderate cases of endometriosis frequently go undetected during ultrasound examinations, in contrast to adenomyosis, which can usually be detected in its initial stages by either an ultrasound or an MRI,” he says.

“Therefore, identifying adenomyosis through a pelvic scan significantly raises the probability of also diagnosing endometriosis concurrently.”

@tianna.nadalin IYKYK. #period #endometriosis #endo #mileycyrus #iykyk ♬ original sound – Tianna Nadalin

 

The mental health impacts of endometriosis

Assoc Prof Polyakov says the emotional and psychological impacts of living with chronic pain can be significant, with studies highlighting the alarming link between endometriosis and developing mental health conditions.

The chronic nature of endometriosis, coupled with the constant battle against pain, the uncertainty surrounding flare-ups, and the profound impact on fertility and life planning contribute to a complex emotional burden, with sufferers reporting significantly higher rates of anxiety and depression compared to the general population.

What is the best diet for endometriosis?

Although there’s no cure for endometriosis, Assoc Prof Polyakov says certain dietary changes can help manage symptoms.

• Eat to reduce inflammation: “A diet rich in fruits, vegetables, omega-3 fatty acids, and whole grains may help reduce inflammation and improve symptoms,” he says.
• “Foods high in omega-3 fatty acids, such as salmon, flaxseeds and walnuts, are known for their anti-inflammatory properties.
• Include plenty of fibre: “Similarly, consuming a diet high in fibre from fruits, vegetables and whole grains can help improve oestrogen metabolism, potentially reducing endometriosis symptoms.”
• Focus on lean proteins: Reducing red meat consumption and increasing intake of lean proteins such as poultry, fish and legumes may also be beneficial, Assoc Prof Polyakov says.
• “Some studies suggest that red meat can increase oestrogen levels and inflammation, potentially exacerbating endometriosis symptoms,” he notes.
• Limit caffeine and alcohol: Assoc Prof Polyakov says limiting the intake of alcohol, caffeine and processed foods may help manage endometriosis symptoms as these substances can contribute to inflammation and may affect hormonal balance, worsening symptoms.
• Drink water: “Hydration is also crucial; drinking plenty of water can help flush toxins from the body and reduce bloating,” Assoc Prof Polyakov explains.

Our experts:

Associate Professor Alex Polyakov is a consultant in obstetrics, gynaecology and reproductive biology who specialises in IVF treatments and infertility issues. He is Medical Director at Genea Melbourne and a Clinical Associate Professor with the Faculty of Medicine, Dentistry & Health Sciences at the University of Melbourne.

Clinical Associate Professor Michael Cooper OAM is a gynaecologist in private practice in Sydney. His major interest is in the treatment of endometriosis particularly requiring advanced surgical and/or assisted reproductive techniques (IVF). He is currently the Head of Gynaecology at St Luke’s Hospital and a Visiting Medical Officer to Royal Prince Alfred Hospital, St Luke’s Hospital and St Vincent’s Private Hospital. He is also an accredited doctor with City Fertility to provide a complete range of fertility and genetic services.

More on women’s reproductive health and periods:

• How to tell if your menstrual cycle is normal
• ‘I thought it was normal’: It’s time to talk about heavy periods
• Is a hysterectomy right for you? Here’s what to know
• Endometriosis and fertility: What you need to know
• What Emma Watkins wants you to know about endometriosis

Written by Tianna Nadalin.