Endometriosis is a common and often painful condition where tissue similar to the lining of the uterus (endometrium) is found outside the uterus.
Symptoms often include pelvic pain, atypical menstrual bleeding, and difficulty getting pregnant. In New Zealand, it is estimated the condition affects 120,000 girls and women. Endometriosis can usually be effectively managed through medication and/or surgery and lifestyle modifications.
Signs and symptoms
Painful periods can be the first sign that a girl or woman has endometriosis. The most common symptoms of endometriosis include:
- Pelvic pain – usually, but not always, associated with menstrual periods. The pain can be severe and debilitating
- Bowel-related symptoms such as bloating and fluctuating bowel habit, similar to irritable bowel syndrome (IBS)
- Pain during or after sexual intercourse
- Abnormal menstrual bleeding (heavy periods or bleeding between periods)
- Pain with ovulation
- Sub-fertility or infertility.
Other symptoms experienced may include:
- Lower back pain
- Constant tiredness/fatigue
- Premenstrual syndrome (PMS)
- Pain before or while passing urine or recurrent urinary tract infections.
Endometrial tissue can form lesions, nodules, and cysts, which are mostly found in the pelvis, the Pouch of Douglas, ovaries, bowel, ligaments, and bladder. Adhesions (fibrous scar tissue that causes internal organs or tissue to stick together) can also form. Cysts on an ovary (endometriomas) may develop in more advanced stages of the disease.
The severity of symptoms experienced is not generally related to the extent of the disease, eg: some women with mild endometriosis can suffer severe symptoms, and vice versa. Not every woman with endometriosis will have regular monthly symptoms. Symptoms of endometriosis usually improve during pregnancy and after menopause.
The cause of endometriosis is not fully understood. Endometriosis New Zealand says research continues around genetic, immunological, and environmental factors. The cause is now generally considered to involve a number of factors with a strong genetic link (if a woman’s mother or sister has the condition then her likelihood of also developing endometriosis is increased).
International studies indicate there's often a long delay - averaging eight years - from a first doctor visit with symptoms to diagnosis. For this reason, it is important for a girl or woman to play an active role in seeking help and accessing treatment, starting with talking with a doctor about all of her symptoms.
To aid diagnosis, a doctor will take a detailed medical history, assess signs and symptoms, and perform a pelvic examination. Sometimes other tests like an ultrasound are performed to assess the pelvis. While this is useful, and can identify cysts associated with endometriosis (endometriomas), it is not a diagnostic tool for endometriosis.
Endometriosis can only be definitively diagnosed with a laparoscopy. This is a surgical procedure performed under a general anaesthetic by a specialist gynaecologist.
The gynaecologist inserts a laparoscope (a long thin tube with a tiny camera at its tip) through a small incision in the tummy button to examine the abdomen and pelvis on a television monitor, looking for endometriosis, scarring and adhesions, or other abnormalities.
Endometriosis is often classified as minimal, mild, moderate, or severe; or recorded in clinical notes as stage I to IV based on American Society of Reproductive Medicine (ASRM) guidelines:
- Minimal or stage I endometriosis: typically small patches, surface lesions or inflammation on or around organs in the pelvis.
- Mild or stage II endometriosis: more extensive than stage I but limited infiltration of pelvic organs. Limited scarring or adhesions.
- Moderate or stage III endometriosis: sometimes more widespread and starting to infiltrate pelvic organs, pelvic side walls or other structures. There may also be scarring and adhesions.
- Severe or stage IV endometriosis: infiltrative disease affecting the pelvic organs and ovaries, often with distortion of the anatomy and extensive adhesions.
Treatment of endometriosis is aimed at relieving symptoms and minimising complications. A treatment plan will consider a number of factors, including:
- Severity of the condition
- Impact on quality of life
- Intentions about having children
- Treatment and management preferences.
Medical treatment focuses on relief of symptoms through the use of pain-relieving medications and hormone treatment.
For mild cases of endometriosis, pain medications, eg: non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, alone may be sufficient to adequately relieve symptoms.
There are a number of different types of hormone treatments that can be used. The contraceptive pill can help to balance and regulate periods and often eases distressing symptoms. If you choose to go on the pill, it is important to be prescribed one that is best suited to your condition. The effectiveness of hormone treatment varies and may work best in cases of mild endometriosis.
Laparoscopic surgery aims to remove the endometriosis lesions and adhesions if they are found and restore normal anatomy. Whenever possible, laparoscopy will be undertaken in preference to laparotomy (open surgical procedure). Medical literature indicates surgical removal of the endometriosis is the gold standard treatment. It is important therefore that the gynaecologist has the appropriate surgical expertise to fully remove the endometriosis.
A hysterectomy is sometimes recommended where symptoms have significantly affected a woman’s quality of life and where future fertility has been ruled out. The ovaries may also be removed (oophorectomy). In these cases, it may be necessary to commence menopausal hormone therapy (formerly known as hormone replacement therapy or HRT) after surgery.
A hysterectomy is not a cure for endometriosis but many women find relief particularly if endometrial tissue was found in the muscles of the uterus (adenomyosis). It is vital that all areas of endometriosis are excised at the same time. Discussion of any surgery should involve the woman so that she is fully informed and involved in her health decision making.
Lifestyle modification and alternative treatment
Self-management is encouraged in the treatment and management of endometriosis symptoms. Endometriosis NZ recommends regular exercise as the best non-drug treatment for pain. A gentle form of exercise, like walking, is recommended post-surgically or if symptoms have become very painful. Good sleep habits are also important.
Nutritional changes may ease irritable bowel-type symptoms. A diet low in fermentable carbs known as FODMAPS may be recommended. That means avoiding a range of foods including wheat, garlic, onions and some fruits and vegetables.
Endometriosis New Zealand is the organisation representing girls and women with endometriosis and pelvic pain in New Zealand and works with those who treat these conditions. ENZ offers information, support, and educational services and programmes.
Endometriosis New Zealand
Phone: (03) 379-7959
Fertility New Zealand offers support and education for couples with infertility problems.Fertility New Zealand
Freephone: 0800 333 306
Endometriosis New Zealand (2017). About endometriosis (Web Page). Christchurch: Endometriosis New Zealand. http://www.nzendo.org.nz/about-endometriosis [Accessed: 07/05/20]
Evans, S., Bush, D. (2016). Endometriosis and pelvic pain (3rd ed.). Susan F. Evans Pty Limited
Fertility New Zealand (2017). Endometriosis and infertility (Pamphlet PDF). Auckland: Fertility New Zealand. http://www.fertilitynz.org.nz/files/4314/8520/6268/0117_Endometriosis_web.pdf
Ministry of Health (2020). Diagnosis and management of endometriosis in New Zealand (PDF). Wellington: New Zealand Government Ministry of Health. https://www.health.govt.nz/system/files/documents/publications/diagnosis-and-management-of-endometriosis-in-new-zealand-mar2020.pdf
O’Toole, M.T. (Ed.) (2017). Endometriosis. Mosby’s Dictionary of Medicine, Nursing & Health Professions (10th ed.). St Louis, MI: Elsevier.
Last reviewed – June 2020