It’s a disease that costs Australia an estimated $7 billion a year in direct medical expenses and lost productivity but the potential cost to suffers is immeasurable.
Defined as the presence of endometrial cells outside of the uterus, endometriosis is one of the most prevalent diseases affecting around 700,000 Australian women and 170 million world-wide.
According to Senior Monash IVF Specialist Dr Kee Ong, these figures are just the tip of the iceberg.
“Endometriosis is as common as Asthma yet we know very little about it. Awareness and understanding is lacking across the spectrum from patients to doctors. It’s massively undiagnosed and one of the most common causes of infertility,” she said.
Diagnosed through key-hole surgery called a laproscopy, Dr Ong says women in Australia often experience a delay of seven to 12 years between the onset of symptoms and correct diagnosis.
Women like Katina Sparke, a Brisbane intensive care nurse and midwife that hopes her personal journey will help break the taboo and raise awareness for the condition.
With the help of Dr Ong, the 35 year-old has won a 5-year battle with one of infertility’s most potent weapons but says other women are slipping through the cracks.
“It’s terrifying and women need to know about this. Women are going through severe and extreme emotional and financial turmoil undergoing repeated IVF cycles when they never stand a chance at success,” she said.
Endometriosis is a chronic disease, where sufferers often experience constant pelvic discomfort, infertility, pain during periods, sex and going to the toilet.
Dr Ong says its variable presentation however, means some patients will suffer with very severe symptoms while others will experience no symptoms at all.
“Many women are unaware they have the condition until they start trying for a baby,” he said.
The incidence of endometriosis in sub-fertile females is 20 to 40 percent, significantly higher than that the general population.
Dr Ong told myGC early diagnosis is essential and surgery significantly improves the chances of conceiving.
Katrina and her husband decided to start a family in 2013 but failed to fall pregnant. Suffering extreme symptoms of endometriosis from an early age, Katrina pushed her doctor for the diagnosis she knew was behind her struggle.
“He was hesitant to do surgery citing no indications for the procedure. I looked young and healthy and was pushing through immense pain to work so my symptoms were not taken seriously. Call it nurses intuition. I knew something was not right,” she said.
Katrina’s doctor eventually performed the laproscopy finding severe endometriosis. She had a fixed frozen pelvis, a huge cyst which would require the removal of part of her right ovary and the endometriosis had spread to her bowel and diaphragm.
“I was infuriated when told the diagnosis was surprising. I was then refused further surgery as the doctor said it was too risky with too many organs involved. I was told to begin IVF. Luckily, I didn’t listen,” she said.
Katrina saw numerous doctors before finding one who agreed to perform surgery to completely remove the endometriosis.
“I was told it was unlikely the endometriosis would return and that I should try to conceive naturally before considering IVF,” she said.
6 months later, following numerous failed IVF cycles at a public IVF clinic in Brisbane, Katrina was still advised to ‘just keep going.’
“They told me it was a lottery system and a numbers game. Women need to know this is the wrong advice. People need to know about the trauma women are going through,” she said.
After researching top fertility specialists in Australia, Katrina found herself in the Gold Coast office of Dr Kee Ong for a second opinion.
“I Immediately knew I was in the right hands. Dr Ong confirmed and validated my concerns and through immediate surgery, he found my endometriosis had returned to moderate levels,” she said.
Under a tailored and specific treatment plan which included the removal of her endometriosis and the additional suppression of Natural Killer (NK) cells, Katrina successfully underwent IVF to fall pregnant with twins.
“I just want to raise awareness. I know women who have gone through 7 cycles of IVF before being diagnosed correctly with endometriosis. Medical professionals need to be more aware of how common this condition is and the devastating consequences if left untreated,” she said.
Dr Ong encourages women to speak up, ask questions, do their research and be more proactive about their treatment plans.
“Fertility is not a numbers game. The emotional, physical and financial toll of multiple, failed IVF treatments can be devastating and unanswered questions add to an extremely stressful situation. Getting to the bottom of the cause of infertility must come first,” he said
For Katrina, it’s now about spreading the word. “Endometriosis is a lifelong condition that can be completely debilitating. It can effect your sex life, your marriage, your mental health and your fertility.”
“Many of my colleagues told me they’re taught in medical school that part of the diagnosis is factoring in days missed at school or work and that endometriosis is rarely a young woman’s condition. This is not the case,” she said.
“I one hundred percent believe Dr Ong is the only reason I was able to achieve pregnancy. Women must make sure they find the right specialist because empathy, meticulous care and expertise is so crucial on this journey. We were sent a miracle. Dr Ong has given us a family and there is no greater gift than that.”