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Endometriosis is a common inflammatory disease estimated to affect 176 million girls and women worldwide in their reproductive years, and 120,000 in New Zealand. This means that roughly 1 in 10 women in New Zealand will have endometriosis. In most cases, there can be symptoms including period pain, pelvic pain and sub-fertility or infertility. In other cases there may be no obvious symptoms and the diagnosis is made during the course of medical procedures for other reasons.
Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus. The tissue can form nodules or plaques which may be visualised at surgery. Endometriosis is commonly found in the pelvic region on the thin pelvic lining called the peritoneum. It may be also be found on the pelvic ligaments, ovaries and bowel. Endometriosis is occasionally found in places outside the pelvis such as in scar tissue, the bellybutton or lungs.
Often if you see your doctor with concern about your periods they will order an ultrasound scan. This can not diagnose most forms of endometriosis, but it can pick up cysts on the ovaries (endometrioma).
Endometriosis is commonly associated with adhesions, which can make surgery more challenging.
If there is endometrial tissue in the muscle of the uterus we call it adenomyosis.
Side view diagram of the female anatomy.
Stages or Grades of Endometriosis
Endometriosis is often classified as minimal, mild, moderate or severe or recorded in surgical notes as stage I – IV. This endometriosis staging system is internationally recognised and was established by the ASRM (American Society of Reproductive Medicine). Here is a brief overview of what the stages mean:
- Minimal or stage I endometriosis: typically small patches, surface lesions or inflammation on or around organs in the pelvic cavity.
- Mild or stage II endometriosis: more extensive than stage I but infiltration of pelvic organs still very limited, without a great deal of scarring or adhesions.
- Moderate or stage III endometriosis: sometimes more widespread and starting to infiltrate pelvic organs, peritoneum (pelvic side walls) or other structures. Sometimes there is also scarring and adhesions.
- Severe or stage IV endometriosis: infiltrative and affecting many pelvic organs and ovaries, often with distortion of the anatomy and adhesions.
This system provides a useful tool to describe the extent of endometriosis. But, it has limitations. For instance the extent of endometriosis is not generally related to the symptoms a girl or woman experiences. Minimal or mild endometriosis can have symptoms which interfere with quality of life and likewise, severe endometriosis may not. For this and other reasons, the staging of endometriosis is being investigated and more research is underway to improve how we describe the clinical severity and impact of the disease. Sometimes deep endometriosis is described as deeply infiltrating endometriosis (DIE).
We are hopeful that many more endometriosis surgeons will use not only the revised ASRM classification system, but also when appropriate, the newer Enzian classification for women with deep endometriosis and the EFI (Endometriosis Fertility index) for women who are concerned about their future fertility. This will help women to better understand the extent and likely impact of their disease following laparoscopic surgery.
What Causes Endometriosis?
The cause of endometriosis is not fully understood though there are several strong theories. Intensive and extensive research around genetics, immunological and environmental factors continue and further research exploring a range of potential causes and contributing factors is being investigated. The cause is now generally considered multi-factorial with a strong genetic link, possibly also how genetics behave with other influences (perhaps by environmental factors for example).
In the 1930s Sampson found that endometriosis was caused by retrograde menstruation or reflux menstruation or period blood back flowing through the fallopian tubes and ‘spilling’ into the pelvic cavity. Some gynaecologists still say this causes endometriosis, though there are now more questions than answers with this theory. Most women have some reflux menstruation with their period, but not all women have endometriosis.
Endometriosis has elements of a pain syndrome often referred to as central neurological sensitisation. There can be an overlap with other conditions characterized by pelvic pain and infertility, including irritable bowel syndrome.
Endometriosis seems to run in families, so you are more likely to have it if there is a family history. It is important to remember not everyone who has had symptoms will have been diagnosed, but they may have experienced the symptoms.
- pain with periods (dysmenorrhoea). Often the most common symptom
bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind (sometimes diagnosed as Irritable Bowel Syndrome)
painful intercourse (dyspareunia)
sub-fertility or infertility
tiredness and low energy
pain in other places such as the lower back
pain at other times e.g. with ovulation or intermittently throughout the month
premenstrual syndrome (PMS). This might make you feel moody, emotional or irritable
abnormal menstrual bleeding
bladder troubles like interstitial cystitis (IC)
Discomfort with periods is often normal, distress is never normal.
Pain during sexual intercourse or afterwards can be common. Internal examination and / or cervical smear can also be painful.
Endometriosis can cause some women to have trouble conceiving which is called sub-fertility. Surgery to remove the endometriosis and restore normal anatomy generally helps fertility. Some women need help to conceive through ART (Assisted Reproductive Technology like IVF).
Discuss all your symptoms with your health professional as it helps with treatment and management. The chronic nature of endometriosis and associated symptoms can be difficult to cope with and can affect relationships, work productivity and general wellbeing.
A doctor may suspect you have endometriosis based on your medical history and symptoms. A physical examination is often performed and scans, blood tests and other investigations may be recommended. These tests do not diagnose endometriosis but can be useful in determining treatment and next steps.
Endometriosis can only be definitely diagnosed by viewing the pelvic cavity at laparoscopy (key hole surgery). This is done in hospital under general anaesthetic and is best performed by a gynaecologist with expertise in treating endometriosis. The endometriosis should be removed (excised or resected) and is sent to the lab for confirmation (histology).
Internationally, there is a diagnostic delay of 8+ years from first presentation of symptoms to a doctor with diagnosis.
Why is there a delay in diagnosis?
When girls and women
- Think their symptoms are normal
- Feel too embarrassed to seek help
- Delay seeking doctors' advice
- Encounter barriers accessing the services they need
- Don't recognise symptoms as probably being endometriosis
- Think girls are too young to have the condition
- Delay referral to a specialist gynaecologist
- Prescribe hormonal therapy such as the oral contraceptive pill without discussing the likelihood of endometriosis being the cause. Some pills are more suited as a medical treatment and often improve symptoms.
- Misdiagnose the condition as something else, like Irritable Bowel Syndrome (IBS), appendicitis, Pelvic Inflammatory Disease (PID), primary dysmenorrhoea (painful periods) or a sexually transmitted infection (STI).
- Think girls are too young to have endometriosis
- Choose not to proceed with laparoscopic review for a variety of reasons, particularly when other medical treatments or interventions have not helped.
- Miss identifying endometriosis at laparoscopy
- Tell you to ‘suck it up’, ‘get over it’, ‘it’s just women’s troubles’ and so on. Comments like these are socially and medically unhelpful and add to the problem.
Endometriosis can occur from a girls’ first menstrual period.
Early intervention is vital to improve quality of life, halt the progression of the disease and ensure fertility is not compromised.
Unfortunately millions of women from generations past and still today may have suffered a whole lifetime but never have had a diagnosis or suitable treatment and the effects sometimes continue beyond the menopause.
ENZ encourages women to talk, share, access best-practice treatment and do what they can to live life to the full despite their endometriosis.
Johnson NP, Hummelshoj L, for the World Endometriosis Society Montpellier Consortium. Consensus on the current management of endometriosis. Hum Reprod 2013;28:1552-1568
Adamson GD et al. Creating solutions in endometriosis: global collaboration through the World Endometriosis Research Foundation. J Endometr 2010:2:3-6
Evans S, Bush D ‘Endometriosis and Pelvic Pain’; Third Edition 2016 ISBN 978-0-9946477-0-2
Stages and Causes:
Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, Bush D, Kiesel L, Tamimi R, Sharpe-Timms KL, Rombauts L, Giudice LC, for the World Endometriosis Society Sao Paulo Consortium. World Endometriosis Society consensus on the classification of endometriosis. Hum Reprod 2017;32:315-324.
American Society for Reproductive Medicine. Revised American Society for Reproductive Medicine classification of endometriosis: 1996. Fertil Steril 1997;67:817–821.
Haas D, Oppelt P, Shebl O, Shamiyeh A, Schimetta W, Mayer R. Enzian classification: does it correlate with clinical symptoms and the rASRM score? Acta Obstet Gynecol Scand 2013;92:562–566.