A study of 620 Australian women living with the painful and often debilitating endometriosis found that women wait an average of 6.4 years before being diagnosed and have frequent surgeries that do not improve their chronic pain.
The study, published in the Journal of Psychosomatic Obstetrics and Gynecology, found that despite medical and surgical interventions, 65.8% of respondents had period pain and 82.7% had chronic pelvic pain in the three months prior to taking the survey. The respondents had consulted an average of three different specialist areas of alternative practitioners in the past 12 months.
“Many women with endometriosis have had a significant delay in diagnosis and continue to experience persistent symptoms despite active management strategies,” the paper concluded.
“This study provides the first internationally comparable Australian data on women with endometriosis, their disease experience and management approaches.”
The study’s lead author, Dr. Beck O’Hara of the School of Public Health and Preventive Medicine at Monash University said the delay in diagnosis comes at two levels: patient and doctor.
“At the patient level, the delay may be due to a normalization of period pains among themselves or family members, or they may have difficulty distinguishing what ‘normal’ period pains are and which may require further investigation, especially if they had symptoms from their first period. ” She said.
“At the doctor’s level, they can usually normalize pain or try initial treatments to treat symptoms like the pill, rule out other disorders, or they may not be familiar with the symptoms of endometriosis.”
The survey was conducted from November 14, 2017 to January 8, 2018. In July 2018, Federal Health Secretary Greg Hunt announced a national plan of action to address the lack of research and treatment for the disease. Endometriosis is a chronic disease that affects one in ten women of childbearing age worldwide. It occurs when tissue similar to the lining of the uterus grows outside of the uterus, causing inflammation, pain, fatigue, and in some cases, infertility. It has no cure.
A gynecologist, Dr. Michael Wynn-Williams said while the national action plan is now funding excellent programs, including the Royal Australian and New Zealand College’s free endometriosis module for obstetricians and gynecologists for healthcare professionals, and high school education programs. More specialized services were needed.
The results of a UK parliamentary inquiry into endometriosis were released on Monday, which found 58% of people with endometriosis had seen their GP more than 10 times before they were diagnosed. It took an average of eight years for the 10,000 women surveyed to get a diagnosis. The research recommended that the government commit to reducing average diagnosis times, with a target of four years or less by 2025 and one year or less by 2030.
Wynn-Williams said the Australian government should commit to similar goals, and it should also set up specialized endometriosis centers similar to those in the UK.
“On-site services in Australia do not receive funding to attract additional surgeons or to build centers of excellence with multidisciplinary teams,” he said. “Management and treatment is not just about surgery. We need dedicated pain services for women that include physiotherapists and pain psychologists.
“These women have suffered for a long time and it affects every part of their life, including their fertility, mental health, education, and joie de vivre in general.”
Wynn-Williams said approximately 1 million women in Australia and New Zealand have the disease.
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