One in 10 Australian women are living with endometriosis, with many unaware they are suffering with the chronic condition.
General Practitioner, Women’s Health Dr Donna Tanchev said women must be aware that painful periods and pelvic pain are not normal and should be investigated.
“Many women experience severe symptoms, but we also need to talk about the fact that up to 45% of endometriosis will present with no symptoms at all,” she said.
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Senior Monash IVF Specialist, Dr Kee Ong confirmed many women are suffering without their knowledge and no idea their fertility is at risk.
“Endometriosis is one of the most prevalent diseases yet massively undiagnosed and is one of the most common causes of infertility,” he said.
“Awareness and understanding are lacking across the spectrum from patients to doctors.”
Shockingly, it can take between 7 to 10 years for a patient to be diagnosed with the condition.
Dr Ong told myGC a pelvic ultrasound does not rule out endometriosis. Instead, an operation called a laparoscopy is the gold standard for diagnosis.
Performing over 500 laparoscopies last year, Dr Ong found the condition in a significant percentage of patients, with many reporting no prior symptoms of pain.
“It really is a silent epidemic which only comes to light for many when they start trying for a baby. We need to get to it sooner,” Dr Ong said.
For 30-year-old Rachel Ross, it was a three-year journey to diagnosis after developing sudden digestion issues, weight loss and pelvic pain.
“I was referred to a Gastroenterologist by my GP who slapped me with the label of IBS. I blindly carried on with these symptoms for a few years knowing something just wasn’t right,” Rachel said.
“When my husband and I started trying for a family, we had no idea of the hard road ahead. After four miscarriages, we demanded further investigation and finally a laparoscopy confirmed endometriosis.”
Rachel is now undergoing IVF with Dr Kee Ong to achieve her dream.
“My advice to women is to advocate for yourself, ask the questions, ask for that test, ask for that referral. I got there in the end and am now in great hands, but an earlier diagnosis can make all the difference,” she said.
Dr Ong says many patients go through extreme emotional and financial turmoil of repeated IVF cycles with a lessor chance of success due to undiagnosed endometriosis.
“This is one of the most heart-breaking things to see. Early diagnosis is essential and there is hope! Surgery significantly improves the chances of conceiving and we can often avoid the IVF path,” he said.
Endometriosis occurs when tissue similar to that normally found lining the uterus occurs in other parts of the body. Tissue responds to hormones released by the ovaries, which can lead to bleeding, inflammation and scarring.
Some of the more obvious symptoms include pain during sex or periods, heavy menstrual bleeding, bleeding between periods, lethargy and reduced fertility.
“My hope is that women gain the knowledge to ask the right questions, speak up and play a proactive role in their treatment plans,” he said.
“Listen to your gut, make sure you’re being heard and don’t be afraid of the diagnosis process to get the answers you need.
“Fertility is not a numbers game and unanswered questions add to an extremely stressful situation. Getting to the bottom of the cause of infertility must come first.”