Image Source: Healthline
By Chrystianna Konidis | @ChrystiannaK
There is a hidden but exceptionally common disease affecting one in every 10 Australian women that is costing the nation an estimated $7.7 billion annually.
Organ damage and chronic pain are medical symptoms that are often linked with a well-known debilitating illness.
But how about a disease that cannot be seen or touched?
How about a disease that is easily misdiagnosed and overlooked?
Known as endometriosis, this disease causes havoc for more than 700,000 Australian women.
Countless women fight in silence, with some not aware they even have the condition.
Too often endometriosis is dismissed as bad period pain and is not taken seriously.
In extreme cases, it can lead to seizures, depression, and infertility.
“While endometriosis affects one out of every 10 women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria.”
– Lena Dunham, writer, actress, director
Endometriosis affects the physical, relationship, emotional, financial, and mental well-being aspects of a woman’s life.
There is a delay in official diagnosis of the disease, averaging between seven and ten years due to the normalisation of symptoms in women and girls, as well as doctors normalising the symptoms of patients who do finally seek medical help.
“As a teenager, I knew that something wasn’t quite right, but I didn’t know how to find an answer other than seeing my local doctor and using the internet,” says Tahlia, 19.
Endometriosis affects the health and welfare of more than 176 million women worldwide.
But researchers still do not know what causes the condition.
Some believe endometriosis could develop due to an abnormality that happens during menstruation.
There is also the possibility that genetic factors cause women to develop endometriosis.
Other potential causes currently undergoing research include imbalances of hormones and immune systems and environmental factors such as diet and lifestyle influences.
Regardless of these theories, endometriosis does not have a cure, and women and girls continue to suffer from this crippling condition.
Pelvic pain cramps, bloating, and pain during sex are common symptoms.
Some women can also experience nausea, diarrhoea, anxiety, and ovarian cysts.
Endometriosis sufferers (often known as ‘endo warriors’) can experience a mix of these symptoms and more, or none at all.
For Chelsea Boulton, 21, endometriosis means brain fog and fatigue.
“My most unexpected symptom of endo has been brain fog that I get leading up to the start of my period,” she says.
“It’s a fatigue that drags me down, and I really struggle to focus and function like I usually would.”
For some women, they can experience a range of no pain, pain just during menstrual cycles, sporadic jolts of pain, or severe and constant pain every day.
Some womens’ pain journeys can also increase or decrease with time and can become even more severe after invasive surgeries.
Some women’s journeys with endometriosis can start from adolescence, during their mid-twenties, after childbirth, or during menopause.
Ultimately, there is no rule book when it comes to the severity of endometriosis symptoms, but it is essential that all patients’ journeys of symptoms including pain are acknowledged and understood.
“Some days it’s like severe period pain that attacks me from my shoulders to my knees,” admits Sarah Cooper, 31.
“When it’s bad though, it’s like someone has a giant but dull chef’s knife and they’re continuously slicing up my insides for hours on end.”
Pelvic pain or painful periods are the most commonly reported symptoms in endo warriors.
Common methods of pain management for some women can include a scorching hot water bottle or wheat bag, high dosages of ibuprofen and paracetamol, and days off from work and study commitments.
For others, hormonal treatments or surgeries, including one or many laparoscopies, bowel surgery or a hysterectomy, may be needed to alleviate significant and reoccurring symptoms.
Alex, 19, knows the ritual around the time of her period all too well.
“When I know my period is coming up, I stock up on Nurofen and chocolate, and schedule a sick day off because I can’t work,” she says.
“There have been a few times where I have collapsed on my way to work and it’s something I am still trying to manage, as well as being iron-deficient.”
Alex says that the recent ban of low-dose codeine medications in Australia has affected how she has been able to manage her extreme bursts of pain, which often come at the start of her menstrual cycle.
“I used to start taking codeine tablets the day before my period was due because it allowed me to function and continue my life,” she says.
“Now without that option, my hardest days are spent in bed crying, and sometimes I want to ring an ambulance because taking two Panadols at a time barely stops my pain, and I usually take more than I’m meant to get through the pain.”
From February 1, 2018, the Federal Government took codeine off pharmacy shelves to stop Australians from misusing the medication.
Codeine medications are now only accessible through a prescription from a doctor, as the Therapeutic Goods Administration’s crackdown on opioid abuse aims to diminish more than one thousand opioid-related deaths per year.
Worried endometriosis sufferers stockpiled on the medication ahead of the ban, as the over-the-counter range of period pain-targeted pills are not an effective blanket of pain relief for every woman.
This is often the reality for some women and girls who resort to self-managing their pain when seeking professional help fails them.
Bianca West, 27, has seen firsthand the short-falls in common misdiagnoses of endometriosis.
“So many women struggle to be taken seriously about their pain, and it’s so frustrating to watch your friend suffer without proper medical answers,” Bianca says.
Because endometriosis lesions are not often found through standard ultrasounds, key-hole surgery (known as a laparoscopy) is needed for surgeon specialists to definitively diagnose endometriosis.
“My best friend was told by different doctors for years that it was just bad period pain, and some exercise and bananas will ease cramping,” Bianca says.
“She’s now infertile at 29-years-old with stage three endometriosis because her doctors brushed off her symptoms and never referred her to a specialist.
“This disease is life-changing and not in a good way.”
Kate Swift, a gynaecology medical resident at Royal Brisbane & Women’s Hospital, says many patients don’t want to have any surgeries that could potentially cause other health problems.
“It can be difficult to explain that laparoscopic surgery is the only measure of true diagnosis, and some patients do not come back for treatment because they don’t want to risk other aspects of their health,” she says.
Awareness of endometriosis is vital to improve the understanding and treatment of this often misunderstood and crippling disorder.
- There is no cure for endometriosis, and a hysterectomy does not guarantee that symptoms will be relieved.
- Endometriosis is difficult to diagnose. The only definitive measure is a laparoscopic surgery by a skilled specialist.
- There is often a long delay between a woman acknowledging her symptoms, going to a doctor, and being diagnosed. The average delay is seven years for some women.
- Chronic pain is not normal and should never be accepted as an everyday part of life. Women should seek help from a trusted health provider.
- Women cannot ‘catch’ endometriosis later in life because they chose not to reproduce in their early twenties. Delaying pregnancy is not a trigger for endometriosis. Pregnancy is also not a cure for endometriosis.
- The contraceptive pill is not an effective symptom suppresser for all women.
Changing the global conversation about endometriosis from misdiagnosing the disease as ‘bad period pain’ to increasing funding and community awareness about the personal and societal effects, is not something easily achieved overnight.
But many warriors, their loved ones, endo organisations, and governments are taking the crucial first step to highlight the burden of this condition to women and their communities.
Endometriosis awareness takes the global spotlight in March each year through their ‘Endo March’ campaign, with the month being dedicated to raising worldwide awareness about the condition.
For organisations like Endometriosis Australia, raising awareness through fundraising is a key step to continuing the critical work Australian researchers perform to learn more about this silent disease.
A recent announcement by the South Australian and Federal governments to improve high-school education about endometriosis and menstrual health through a specialised program aims to reduce the delay in diagnosis across all age groups.
Through teaching younger girls to recognise what is normal and what is not when it comes to menstrual health, Endo Australia aims to “break the current cycle of delay in diagnosis”.
Increasing awareness of distressing symptoms seeks to break down the stigma and embarrassment and encourage girls to seek support earlier.
For many endo warriors, the reality of living with the disease is painful and life-changing.
Some women are actively managing their condition with surgery and holistic approaches, while others may never be officially diagnosed with the condition.
There may be no cure anytime soon for the millions of women and girls living with endometriosis.
But a unified approach can bring the awareness, funding, and research that endometriosis deserves, and help every one in 10 women on their journeys.