What is endometriosis?

Affects 1 in 10 women globally and up to 30% of women with infertility.

​

Women whose mother or sister have endometriosis are 7-10x more likely to have endometriosis.

​

“A systemic, inflammatory disease characterized at surgery by the presence of endometrium-like tissue found outside the uterus, usually with an associated inflammatory process. It is a spectrum disease with a variety of subtypes and clinical presentations, and pain, inflammation, infertility, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), GI and other organ dysfunction, and much more are common with endometriosis” (Int’l Endometriosis Working Group, 2021)

​

This "endometrium-like tissue" represents cells that are similar to those that line your uterus and which grow, and are then shed, as part of your menstrual cycle.  With endometriosis, these hormonally stimulated cells lead to inflammation, scarring and pain wherever they are found outside of the uterus (most commonly in the pelvic cavity though disease does rarely occur outside of the abdomen/pelvis eg. in the nasal cavities).

​

"Types" of endometriosis include:

• Superficial endometriosis - growing on the lining of the pelvis/abdomen (the peritoneum)

• Deep infiltrating endometriosis - invasion of deposits into the peritoneum (>5mm) and potentially adjacent organs such as the bladder, bowels and fallopian tubes (affecting fertility)

• Endometriomas - ovarian disease, so called "chocolate cysts", which can impact ovarian function and fertility

• Adenomyosis - strictly speaking not endometriosis, however, in effect it is the same process occuring within the muscular wall of the uterus - characterised by pain and heavy, painful periods that are often resistant to hormonal therapies

What are the symptoms of endometriosis?

It is far more than simply painful periods, though dysmenorrhoea (pain with periods) is a common symptom in women with endometriosis.  Many women experience dysmenorrhoea, especially adolescents, for which non-surgical management strategies exist.  Indeed, it is important to stress that pain is not ok and help should be sought if simple pain relief options (over the counter NSAIDs) are ineffective or your periods are having an impact upon the quality of your life, attendance at school/work and the like.  

​

The challenge with identifying endometriosis is that the symptoms can be quite varied and often includes dysmenorrhoea:

• debilitating periods - either due to pain, heavy bleeding or both (3 out of 4 patients)

• infertility (up to 30% of infertility patients with 10-20% of patients admitted to hospital for endometriosis having a diagnosis of infertility)

• abdominal/pelvic pain occurring outside of menstrual bleeding;

• "IBS - irritable bowel" type symptoms;

• back and leg pains, especially cyclical (with the period);

• painful sex;

• bladder and/or bowel disturbances

• tiredness and mood changes, especially around the time of your period

• pelvic muscle spasm/tightening and vaginal discomfort, especially during intercourse

​​

Other conditions associated with endometriosis

Endometriosis patients are more likely to have certain other overlapping conditions which include:

• Interstitital cystitis/bladder pain syndrome - a chronic, painful bladder condition that often mimics recurrent bladder infections.  The key to suspecting the condition is in the absence of proven bacterial infections.  Diagnosis is via a surgical procedure called cystoscopy - this is often performed at the same time as a laparoscopy for endometriosis

• Vestibulodynia/vaginismus - at least 30% of patients with vestibulodynia and vaginismus, particularly under the age of 30, also have endometriosis with endometriosis almost certainly a significant contributing factor to these symptoms.  Certain treatments for vestibulodynia and vaginismus (nerve blocks and targetted Botox injections) are often performed at the same time as laparoscopy for endometriosis.

 

Do I have endometriosis?

On average, it takes 7 years for women with symptoms to be diagnosed.  The principle challenge in diagnosis is that the gold standard for identifying endometriosis is through surgery - laparoscopy.  There are no reliable blood tests and imaging studies are either limited (eg ultrasound scan - highly dependent upon sonographer/radiologist skill set and level of disease) or expensive (MRI - though recent Government announcements hold out hope of greater access).  Additionally, as the severity of disease symptoms does not correlate reliably with the volume of disease (as defined surgically), women with negative imaging and blood tests will often have endometriosis that can only be seen surgically.

​

There are tools to help women assess their potential of having endometriosis and these are helpful in starting a conversation with their primary clinician and/or specialist.  One such tool is the RANZCOG RATE tool:

​