Endometriosis is a common condition in which tissue similar to the tissue that lines the uterus (endometrial tissue) grows in places outside the uterus, often causing pain and sometimes problems with fertility.
The severity of endometriosis symptoms can vary from woman to woman. Some women experience debilitating pain and symptoms, while others have no symptoms and are unaware they even have the condition. Some women only discover they have endometriosis when they have trouble getting pregnant.
Symptoms often improve during pregnancy and after menopause.
Symptoms of endometriosis may include:
- period pain (known as dysmenorrhoea) that has often become more severe over time;
- pelvic pain starting several days before a period;
- pain in the abdomen and pelvis area when you are not having a period;
- pelvic pain during ovulation;
- pain during or after sexual intercourse (known as dyspareunia);
- lower back pain;
- heavy or irregular menstrual bleeding, including passing blood clots;
- ‘spotting’ or bleeding between periods;
- diarrhoea, bloating or constipation, especially during a period; and
- having difficulty getting pregnant (which affects about 30-50 per cent of women with endometriosis).
Some women experience stress and anxiety as a result of knowing their monthly period will bring pain and discomfort. If you feel like this you should see your doctor to find out the cause of your discomfort.
What happens in endometriosis?
In endometriosis, tissue similar to that lining the uterus (endometrial tissue) is found outside the uterus (womb) – sometimes referred to as endometrial lesions or implants. The tissue can become inflamed and form scar tissue.
This tissue can attach to:
- the ovaries;
- the fallopian tubes;
- the outside of the uterus;
- the ligaments that support the uterus;
- the bladder;
- the bowel; or
- settle in the pouch of Douglas (the area between the uterus and the rectum).
In rare cases, endometrial implants may be found in the lungs, diaphragm, or in old surgical scars on the abdomen.
The endometriosis lesions (or implants) respond to hormonal changes within the body in exactly the same way as the endometrial tissue that lines the uterus, which is the tissue that comes away every month as your period.
So, every month the endometrial-like tissue implants may bleed. However, the blood has no outlet to leave the body, so it causes inflammation and eventually leads to the formation of scar tissue.
The scar tissue can form what are called ‘adhesions’ which are fibrous bands of tissue that connect internal structures and body organs that would normally be separate. These adhesions can cause pain by pulling and distorting the internal organs and make some movements painful, for example, having sex or going to the toilet.
It is also possible to have cysts associated with endometriosis – these are called endometriomas.
Causes of endometriosis
Endometriosis affects up to 10 per cent of women in their reproductive years (between puberty and menopause).
The exact cause of endometriosis is not yet fully known. However, both genetic and environmental factors seem to play a role.
Women with a family history of endometriosis have an increased risk of developing the condition.
Some experts suggest that during a woman’s periods, instead of flowing out through the vagina, some endometrial cells and blood travel backwards up the fallopian tubes and spill into the pelvic cavity (this theory is called retrograde menstruation).
The endometrial cells then seed themselves onto the surface of tissues or organs in the abdominal cavity and begin to grow. Some degree of retrograde menstruation is thought to occur in most women, but not all women develop endometriosis, so clearly other factors are at play.
The progression of endometriosis may be influenced by hormones and growth factors. The immune system may also possibly play a role.
When to see your doctor
You should not try to soldier on and ignore severe period pain.
Consult your doctor if:
- your period pain is intense or persistent;
- there is pain in the pelvic area that worsens during your periods;
- you have excessive menstrual bleeding or clotting;
- you experience pain when having sex; or
- you are missing school, work or social activities because of your symptoms.
Tests and diagnosis
If you have symptoms of endometriosis you should see your GP. Getting a diagnosis early can mean treatment is started sooner and this can reduce the severity of endometriosis.
Your doctor will ask about your symptoms and perform a physical examination.
Your doctor may order a test called an ultrasound, and they may refer you to a gynaecologist (a specialist who deals with the female reproductive system).
An ultrasound scan of your pelvis can sometimes show evidence of endometriosis. However, ultrasound scans can be normal in women who have endometriosis.
A gynaecologist may perform a laparoscopy to make the diagnosis of endometriosis, as this is the only definite way to diagnose it.
A laparoscopy is a procedure to view the inside of the abdomen with a small fibre-optic tube. Under a general anaesthetic, the tube is inserted through a small hole near your navel and the gynaecologist can look for any endometriosis lesions (implants), scar tissue, adhesions or cysts. A sample of these tissues (biopsy) will be taken to help confirm the diagnosis.
If the gynaecologist finds endometriosis during a laparoscopy, they may be able to treat it at the same time. They may also classify it from stage 1 to stage 4 – stage 1 being minimal and stage 4 being severe.
Treatment for endometriosis
Unfortunately there is no permanent cure for endometriosis. However, treatments are available to relieve symptoms and improve fertility (if desired).
Sometimes a combination of several types of treatments is used to treat endometriosis. The most suitable treatment for you will depend on how severe your symptoms are and whether you want to become pregnant now or in the future.
Endometriosis rarely continues to be active after menopause, but (extremely rarely) hormone replacement therapy can cause a recurrence of symptoms.
Anti-inflammatory medicines and other pain relievers can be used for pain relief. Non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol are commonly used, sometimes in combination. Regular dosing of pain relievers is usually recommended during the time of pain.
Hormonal treatments can help shrink or stop the growth of endometriosis lesions, and may relieve or reduce pain associated with endometriosis. They do this by suppressing the normal menstrual cycle.
Most hormonal treatments are also used for contraception and cannot be used during pregnancy, so hormonal treatments are usually only recommended for women not trying to conceive (get pregnant).
The combined (oestrogen and progesterone) oral contraceptive pill can be taken to reduce symptoms such as pain by helping to control your oestrogen levels. Taking the pill continuously to avoid having periods (by not having a 7-day pill-free or sugar pill interval) is also often recommended.
Side effects of the pill can include nausea, breast tenderness, headaches, weight gain and increased risk of blood clots.
Progesterone-like hormones (progestins) can be given to help relieve symptoms and reduce the activity of endometriosis in the short term. Examples include:
- medroxyprogesterone (e.g. Provera tablets, Ralovera tablets);
- norethisterone (e.g. Primolut N tablets); and
- dienogest (e.g. Visanne tablets).
Side effects associated with these medicines include weight gain, acne, bloating, breast tenderness and mood changes.
A progesterone-releasing intrauterine device (IUD) is a contraceptive device that can be used to treat symptoms such as heavy menstrual bleeding. Such devices may also help reduce the pain associated with endometriosis.
GnRH analogues are medicines that inhibit the body’s release of gonadotrophin releasing hormone (which stimulates oestrogen production). Examples include goserelin (Zoladex) or nafarelin (Synarel). These medicines help shrink endometrial tissue and can be used short-term for the relief of endometriosis-related pain.
Side effects associated with GnRH analogues include menopause-like symptoms such as hot flushes, loss of bone density and vaginal dryness. These medicines may be prescribed with a low dose of hormone replacement therapy (HRT) to help combat these symptoms.
Laparoscopic surgery may be recommended for the treatment of endometriosis. During surgery, endometriosis lesions, adhesions and cysts may be removed or destroyed. They may be burned out by diathermy or cut out surgically.
Surgery can help relieve severe pain, but other treatments are often tried first for the treatment of pain alone.
Surgical treatment of endometriosis may be recommended if you are having difficulty getting pregnant, as this can improve fertility.
In some women, when treatments have not relieved severe symptoms, a hysterectomy may be considered.
Acupuncture, which involves the insertion of thin needles into particular parts of the body, may be helpful in the treatment of painful endometriosis.
TENS – transcutaneous electrical nerve stimulation – may also help relieve pain. This treatment uses low voltage electrical currents passed through electrodes taped to the skin to relieve pain.
Some women with endometriosis have tried complementary medicines. It’s important to always discuss the use of complementary therapies with your doctor, especially because they can sometimes interfere with your other medicines.
Surgery may help women with endometriosis who are having trouble getting pregnant. Another option is assisted reproductive technologies such as in vitro fertilisation (IVF). Your gynaecologist will be able to discuss the most appropriate treatments if you have endometriosis and are trying to conceive a baby.
Self-help/ lifestyle measures
Self-help measures such as heat packs and warm baths may help relax pelvic muscles and relieve pain.
Regular exercise may also help improve symptoms for some women with endometriosis.
Although there is no evidence that other lifestyle measures can improve symptoms, getting enough sleep and reducing stress will help you feel better generally and may help you deal with symptoms. Try mindfulness techniques, or perhaps yoga for relaxation.
2. World Endometriosis Society. Consensus on current management of endometriosis. Human Reproduction 2013; 28(6):1552-68.
3. Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Endometriosis â€“ Information for patients (updated 26 Oct 2012). http://www.ranzcog.edu.au/conditions/endometriosis.html (accessed Mar 2016).http://endometriosis.ca/Facts-about-endometriosis.pdf
4. Royal Womenâ€™s Hospital. Endometriosis â€“ information for women (updated Jan 2014). https://www.thewomens.org.au/health-information/periods/endometriosis/about-endometriosis/ (accessed Mar 2016).