We need your help to keep Endometriosis recognised as a cause of pelvic pain in Australia.

The National College of Anaesthetists and Pain Medicine (ANZCA) has issued a pilot statement on pelvic pain, asserting that the long-held paradigm that endometriosis lesions are a direct cause of PPP is no longer tenable. The statement characterises pelvic pain as a menstrual issue, or a form of nociplastic pain, in essence suggesting that endometriosis is hysteria: pain without an organic cause.

If you have endometriosis or know someone who does, I urge you to take immediate action and provide feedback on this statement. We ALREADY have difficulty accessing treatment such as excision surgery, pain relief options, and adequate affordable allied health services, and this statement does not bring about any meaningful developments.

In recent years, there has been an increase in general practitioners and allied health professionals recommending physiotherapy, yoga, cognitive behavioural therapy (CBT), and dietary changes. Whilst these therapies are just that, therapeutic, often helpful, the healthcare system is under significant pressure. Instead of adequately training surgeons in complex surgical technique, there is a tendency to dilute the quality of care to other specialties, in turn increasing patient costs. These alternative approaches are frequently insufficient and expensive, contributing to the ongoing failure of our healthcare system for those with endo. A holistic approach IS important, when the system is actually set up to help us.

The National Endometriosis Guideline established by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) are not sufficient. Patients endure cycles of inadequate management. Typically, patients visit their GP multiple times before being prescribed double-strength naproxen, undergoing an extremely invasive deep endometriosis ultrasound, enduring several rounds of chemical menopause, and receiving ablation surgery by surgeons who cannot address complex endometriosis. Consequently, patients often wake up in more pain and are then prescribed antidepressants, more pelvic physiotherapy, acupuncture, yoga, dietary consultations, new hormonal birth control NOT listed on the PBS (yep, thats $135 a pop) and additional rounds of chemical menopause. The Team Care Plans or Chronic Health care plans created by GP's get us nowhere - 5 rebatable sessions per year, and the rest is on the patient to fund. This is the disheartening journey of a standard endometriosis patient, perpetuated by these leading organisations, and the exact system setting us up for permanent and lifelong disability.

The statement published by the National College of Anaesthetists and Pain Medicine, along with its background paper PS15(PM) BP, fails to bring about any meaningful change in the care of endometriosis patients.

Despite being recognised by the NHS as one of the top 20 most painful conditions and affecting 1 in 7 women (including a number of males), endometriosis is not classified as a disability in Australia. Consequently, it costs the average patient approximately $30,900 annually.

In 2018, when the initial National Action Plan for Endometriosis was launched, the government acknowledged a "lack of definitive research" into the condition. Now, just six years later, it appears they have abandoned their efforts. Patients have little to know insight into ongoing research, and are consistently badgered to donate to these hidden efforts by peak bodies, (despite not being able to afford management methods themselves!). Upon review of Financial Statements by peak organisations, of $800,000 in revenue, only $100,00 of that went to research, whilst over $300,000 was sent to salaries.

In collaboration with the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, ANZCA seeks to endorse a sociopsychobiomedical management approach, with little explanation of what this entails. The  approach so far as initiated by RANZCOG has consistently shown minimal success for endometriosis patients, perpetuating a troubling cycle of inadequate and ineffective care for those suffering from this debilitating condition.

In an interview with The Daily Aus in March this year, the Chair of Endometriosis Australia, Monica Forlano, stated that there is "a long way to go." Assistant Health Minister Ged Kearney acknowledged that women's pain "has not been taken seriously," while Shadow Health Minister Anne Ruston expressed concerns that much-needed pain clinics are "not delivering the access and treatments that were intended."

This situation is not surprising. What patients need is substantial investment from our governments into the training and establishment of high-volume, interdisciplinary Endometriosis Specialists and expert care. 

RANZCOG, ANZCA, and Endometriosis Australia: step up and start caring.

Please provide your feedback via email to fpm@anzca.edu.au 

 

More on Endometriosis

Endometriosis is not simply persistent pelvic pain nor is it tissue that is misplaced uterine lining as outlined in the statement. Endometriosis tissue is its own separate entity.

“Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found in extrauterine sites.”( Kennedy S. et al., 2005; Klemmt et al., 2018; Saunders et al., 2021).

Common Endometriosis symptoms are bowel pain (often misdiagnosed as IBS), constipation and/or diarrhea, painful bowel movements, excessive bloating, bladder pain, recurrent urinary tract infections, pelvic pain, period pain, painful sex, lung collapses, recurrent cyclical chest pain, silent kidney death – the list goes on.

Endometriosis goes far beyond the pelvis. The aberrant processes involved in the disease give rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), organ dysfunction and much more. Alterations in certain biological processes of the endocrine and immune systems have also been observed with the disease, and endometriosis is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules. In addition, the presence of neuropeptides is also closely associated with fibrosis in endometriotic lesions and is also a likely cause of endometriosis-associated pain both within the pelvis and in extrapelvic regions.