Endometriosis is a common inflammatory condition where tissue similar to the lining of the uterus (endometrium) is found outside the uterus.
The tissue can form lesions, nodules and cysts which are mostly found in the pelvis, the Pouch of Douglas, ovaries, bowel, ligaments and bladder. It can be common for adhesions (fibrous scar tissue which causes internal organs or tissue to stick together) to form. Cysts on an ovary (endometriomas) may also develop in more advanced stages of the disease.
Common symptoms include pelvic pain, unusual menstrual bleeding, and difficulty getting pregnant. In New Zealand, it is estimated the condition affects 120,000 or one in ten girls and women.
Endometriosis can usually be effectively managed through medication and/or surgery and lifestyle modifications.
Signs and symptoms
Painful periods (dysmenorrhoea) that cause distress can be the first sign that a young 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.
Symptoms of endometriosis usually improve during pregnancy and after menopause.
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.
The cause of endometriosis is not fully understood, although the condition does run in families (if a woman’s mother or sister has the condition then her likelihood of also developing endometriosis is increased).
Endometriosis New Zealand says research continues around genetics, immunological and environmental factors. The cause is now generally considered multi-factorial with a strong genetic link – this describes the interplay of genetics with other factors or influences.
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. Other small incisions are made on the lower abdomen to allow the instruments to pass through. The laparoscope allows the inside of the abdominal cavity to be viewed on a television monitor. The abdominal cavity is inflated with carbon dioxide gas to improve visibility. The gynaecologist uses the laparoscope to examine the abdomen and pelvis for endometriosis, scarring and adhesions, or other abnormalities.
It is important for a girl or woman to play an active role in seeking help and accessing the best treatment for her needs, starting with discussing all of her symptoms with her doctor.
The average estimated delay internationally - from a first doctor visit with symptoms to diagnosis - is reportedly eight years. To aid diagnosis, a doctor will take a detailed medical history, assess signs and symptoms, and will 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 is staged to indicate its severity. It 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. There may be some filmy adhesions.
- 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, peritoneum (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.
A multi-disciplinary holistic approach is considered best practice treatment. This usually includes medical, surgical and evidence based self-management practices. Treatment of endometriosis is aimed at relieving symptoms and minimising complications. A treatment plan will take into account a number of factors, including:
- The severity of the condition
- The impact on quality of life
- Your age
- Whether you wish to have children
- Your treatment and management preferences.
It is important to discuss treatment options with your GP or specialist in order to weigh up the best course of action which suits your needs.
Treatment options include:
Medical treatment focuses on relief of symptoms through the use of analgesic (pain relieving) medications and hormone treatment.
For mild cases of endometriosis, pain-relieving 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’s important to be prescribed the one that is best suited to your condition. The effectiveness of hormone treatment varies and it appears to work best in cases of mild endometriosis.
Laparoscopic surgery aims to remove (excise) the endometriosis lesions and adhesions if they are found and restore normal anatomy (if it has been distorted). Whenever possible, laparoscopy will be undertaken in preference to laparotomy (open surgical procedure). It is acknowledged in the literature that surgical excision of the endometriosis is the gold standard treatment. It is important therefore that the gynaecologist has the appropriate surgical expertise to fully excise 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
Evidence-based self-management should be encouraged in the treatment and management of endometriosis symptoms. Endometriosis NZ recommends regular exercise as the best non-drug treatment for pain. A gentle approach like walking, is recommended post-surgically or if symptoms have become very painful.
Nutritional changes often ease the bowel related ‘IBS type’ symptoms. Foods known as FODMAPs often cause IBS symptoms and it is thought that anti-inflammatory foods might relieve bowel symptoms.
Alternative treatments such as acupuncture and massage may provide symptom relief for some women. Good sleep habit are vital.
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: 03/06/17]
‘Endometriosis and Pelvic Pain’ Evans; Bush. 2016
Fertility New Zealand (2017). Endometriosis and infertility (Pamphlet). Auckland: Fertility New Zealand. http://www.fertilitynz.org.nz/files/4314/8520/6268/0117_Endometriosis_web.pdf
O’Toole, M.T. (Ed.) (2013). Endometriosis. Mosby’s Dictionary of Medicine, Nursing & Health Professions (9th ed.). St Louis, MI: Elsevier Mosby.
Last Reviewed – July 2017