[Image source: iStockphoto]
or try the A-Z Library
Fact File
Endometriosis
Marilyn Monroe, Queen Victoria, and Susan Sarandon have all suffered the poorly-understood disease endometriosis. Symptoms include irregular periods, upset bowel or bladder function, and sometimes infertility. But drugs and surgical treatments can now offer relief for many.
Published 25/03/2004
[Image source: iStockphoto]
Background
She might have looked glamorous but Marilyn Monroe spent much of her life in chronic pain, suffering miscarriages and becoming addicted to pain killers – which eventually played a part in her death. She had endometriosis; a little understood but common disease of the female pelvis.
Endometriosis (sometimes referred to as 'endo') is a condition where endometrium – the tissue which normally lines the uterus – is found outside the uterus on the surface of other organs of the pelvis. It irritates the nerve endings of these organs, and interferes with their functions, causing (often severe) pelvic pain, irregular menstrual bleeding, infertility and sometimes bowel and bladder symptoms. Because it tends to mimic other pelvic, bowel and bladder conditions, and because it is poorly understood by many people (including some doctors), endometriosis can take months or even years to be diagnosed and properly treated. But treatment – which is much simpler and more effective than in Marilyn Monroe's lifetime – can bring dramatic relief.
Causes
Endometrium is the name given to the inside lining of the cavity of the uterus (the womb). But in a percentage of women, patches of endometrium-like tissue are found elsewhere in the pelvis or abdomen – on the ovaries, uterus, bowel, bladder, ligaments (bands of tissue that hold the uterus in place) and in the Pouch of Douglas (the area between the uterus and bowel).
Endometriosis is often found in the ovaries, uterus, and fallopian tubes. It can also be found attached to the bowel or bladder.Exactly why tissue that should normally be found in the uterus ends up at these other sites isn't known. One theory says that fragments of endometrium somehow migrate up through the fallopian tubes and then out into the pelvis through the space between the end of the fallopian tube and the ovary. Another says that the aberrant endometrium is laid down during early foetal life.
Despite the fact that they aren't in the uterus, the fragments of tissue still act like uterine endometrium. They are influenced by the same sex hormones (oestrogen and progesterone) that cause the uterine endometrium to thicken in the first half of the menstrual cycle, and (if there's no pregnancy), to break down and bleed in the second half. But the unlike the endometrium in the uterus, which is passed through the cervix and vagina as a menstrual period, the pelvic endometrium has nowhere to go and bleeds directly onto the surface of the surrounding organs and tissues. This causes irritation which leads to inflammation, scarring and, sometimes, the development of adhesions (abnormal fibrous tissue growth) between organs.
As the disease progresses, these areas of aberrant endometrium grow and they may eventually form cysts. These are usually small – less than two or three centimetres in diameter – but can grow as large as ten or more centimetres. Cysts on the ovary are known as 'chocolate cysts' or endometriomas.
Endometriosis is a common condition, affecting about ten per cent of Australian women at some stage during their menstruating years. It can occur at any time between puberty and menopause. It's more common in women who have few pregnancies or none, who have pregnancies later in life, who don't breastfeed (or breastfeed for short periods) and/or have female relatives with the disease.
Symptoms
The symptoms vary enormously depending on how severe the disease is, and where the tissue is located – at certain locations, for example the pouch of Douglas, the symptoms may be more severe.
Someone with endometriosis may have:
- Pain. This is usually worse than normal period pain but there can also be pelvic or abdominal pain at other times during the cycle, for example during ovulation. Pain can be very severe and be aggravated by sexual intercourse and bowel or bladder movements. Back pain (felt in the back but actually coming from the pelvic organs) is also common.
- Vaginal bleeding. This can be heavy, prolonged or irregular (with irregular menstrual cycles).
- Bowel and bladder symptoms. These include painful bowel movements, diarrhoea and/or constipation, bleeding from the bowel, pain when passing urine and the need to urinate frequently. These are caused by endometrioses on the outside of (or close to) the bladder or bowel.
- Infertility. Endometriosis is one of the main causes of infertility in women over the age of 25; about 30 to 40 per cent of infertile women probably have some degree of endometriosis.
Women with endometriosis often notice their symptoms improve if they're pregnant - particularly during the last few months of pregnancy. But the effect is usually only temporary.
Diagnosis
Because endometriosis affects internal pelvic organs and because other conditions can give rise to similar symptoms, endometriosis is often hard for a GP to diagnose. Also, many doctors don't know much about the condition or don't think of it when a woman presents to them with pelvic pain. It may take several visits to different doctors before the diagnosis of endometriosis is made. This is unfortunate, because months or years of needless suffering can be avoided if the diagnosis is made and treatment is given early on.
A GP who suspects endometriosis will do a vaginal and pelvic examination, but won't be able to diagnose the condition for certain. (Ordering procedures like ultrasound, CT or MRI scans doesn't help because these often can't detect the abnormal areas of endometrium. But they can help rule out other disorders). So the GP will send the patient to a gynaecologist, who will confirm the diagnosis by doing a laparoscopy. This is a fairly minor procedure performed in a day-only clinic or hospital outpatients department under a general anaesthetic. A laparoscope – a long, thin, telescope-like instrument with a lens at one end – is inserted into the abdomen via a small incision near the belly button. The gynaecologist can visualise the organs of the pelvis and see any endometrial implants and cysts using this instrument.
Treatment
There are two approaches to treatment: drugs and surgery.
Drugs
These don't cure the condition, but they do suppress the symptoms. There are two types: painkillers (generally mild analgesics an/or anti-inflammatory drugs) and hormonal treatments. The latter are synthetic hormone tablets which inhibit the production of the female hormone oestrogen and so remove the stimulus for the growth of endometrial tissue. The most commonly-used ones in Australia are Provera, Depo-provera, Primolut N and some brands of the oral contraceptive pill. There's also a group of new drugs known as the GnRH agonists, two of which – Synarel and Zoladex – are now available in Australia. Their main problem is breakthrough bleeding (bleeding at times other than the normal period). Also, when the hormones are stopped, the symptoms tend to return.
Surgery
In some cases surgery is the better option. Surgery for endometriosis aims to remove as many implants, cysts, endometriomas and adhesions as possible, and to repair any damage caused by the disease. It can be done during a laparoscopy (see Diagnosis); the surgeon inserts a laser, diathermy or cauterisation instrument along with the laparoscope, and uses it to destroy the implants or cyst. But if the disease is widespread and extensive, laparotomy – involving a much larger incision into the abdomen – might be the preferred option. Laparoscopic surgery involves only a small incision and so leaves a much smaller scar than a laparotomy. There is also less discomfort and a shorter hospital stay (one day, compared to five).
After surgery (using either approach), about 70 per cent of women experience complete or partial relief from their symptoms. But in about 30 per cent of cases, there will generally be a recurrence within twelve months and in as many as 50 per cent, within five years. Generally speaking, the more areas that can be removed at surgery, the better the outcome, but if the disease is extensive, this is harder to achieve at surgery and recurrence is more likely.
In severe or chronic cases, when everything else has been tried and has failed, a hysterectomy may be needed. This involves surgical removal of the uterus and cervix, and in some cases both ovaries and fallopian tubes also (known as a bilateral salpingo-oophorectomy).
Reviewed by Ian S Fraser, Professor in Reproductive Medicine, University of Sydney.
Published 25/03/2004 Last modified 16/01/2007