Do you often experience period or pelvic pain so severe that over-the-counter medication does little to ease the pain? Or have you struggled to get pregnant for months or years with no explanation?
If so, you might be the one in 10 Australian women of reproductive age with endometriosis, the little-known progressive and often debilitating condition that affects a woman’s reproductive organs.
Dr Janine Manwaring, a gynaecologist at Jean Hailes for Women’s Health, says, “Endometriosis has very much been a silent disease, both amongst women themselves as well as in the general population. It is not until recently that there has been a voice within the community and media to highlight the disease and its far-reaching impact on women in our society.”
What is endometriosis?
Endometriosis happens when cells like those that line the uterus (womb) grow in other parts of the pelvis such as the bladder, bowel or ovaries. In rare cases, these cells can develop in other parts of the body such as in the diaphragm, liver, eye or nose.
These cells respond to oestrogen and progesterone, just like the cells within the uterus. This means they may bleed at the same time as your period, but they can’t leave the body during menstruation, which can cause pain and inflammation and lead to scar tissue.
The cause of endometriosis isn’t clear-cut. But these factors can play a role:
- if your mother or sister has endometriosis, it increases your risk up to 10 times the population average
- starting your period before age 11
- becoming pregnant for the first time at an older age
- long or heavy periods
- regular cycles of less than 27 days
- changes in the immune cells
- a low body weight
- high alcohol consumption.
About a quarter of women will not experience symptoms of endometriosis. These women may only discover they have the condition after fertility struggles or if they’re diagnosed during an unrelated operation.
For the remainder of sufferers, the most common symptom is severe period or pelvic pain.
Dr Manwaring says, “a degree of pain can be experienced with normal periods, but it should respond to over-the-counter pain medication and not impact on daily living, such as needing to take time off school or work.”
Other symptoms may include:
- ovulation pain
- heavy or irregular periods
- bloating around the time of period
- fatigue – especially around the time of period
- pain during or after sex
- pain when going to the toilet
- abdominal or back pain
- bleeding from the bladder or bowel
- changes in bowel habits
- mood changes.
A laparoscopy – a minor operation done under an anaesthetic – is the only way to diagnose endometriosis. A gynaecologist will insert a thin telescopic tube with a light into the abdomen through a small cut in the belly button to see if there is any endometrial tissue outside the uterus. A tissue sample will then be taken and examined under a microscope.
Treatment options for endometriosis include:
- maintaining a healthy lifestyle
- pain-relief medications
- hormone therapy such as the contraceptive pill
- surgery such as laparoscopy, laparotomy and hysterectomy.
Endometriosis and fertility
About a third of women with endometriosis may experience fertility issues.
“The higher the stage of the disease at diagnosis (there are four stages) usually correlates with higher rates of recurrence and fertility issues. However, subfertility cannot be diagnosed until a woman tries to conceive, even if her pelvis looks significantly affected,” says Dr Manwaring.
“My usual advice is for a woman to optimise her health and attempt conception before 35 years of age, and to not wait more than a year before pursuing assisted reproductive options.”
The outlook for women with endometriosis
Dr Manwaring says early detection can be the key to managing endometriosis.
“Earlier detection allows for earlier treatment, which can reduce the damage that endometriosis can do in a woman’s pelvis. Also, women lose years of productive life suffering from endometriosis, and this can be reduced by earlier detection.”
If you’re worried you may have endometriosis, speak to your GP or gynaecologist.