Words by Haylee Penfold // illustration by Mimi Butlin
One in nine people with a uterus suffer from endometriosis in Australia, and already it takes – on average – nine years to receive a diagnosis. On July 29 The Australian and New Zealand College of Anesthetics (ANZCA) released their guidelines on treating pelvic pain. Within this statement, ANZCA declared that endometriosis lesions do not cause pain. However, if you were to ask anyone diagnosed with endometriosis they would be sure to disagree with you.
That wasn’t the only issue within the newly stated guidelines, the current gold standard treatment of utilising laparoscopic surgery to remove endometriosis tissue was labeled “inadequate”. Instead, it is recommended to seek assistance from the newly government-funded pain services. While pelvic-floor physio can be beneficial in pain management for this condition, it does not address the issues that come with severe endometriosis that can often cause organs to fuse together and even damage organs and their functions.
As someone who has lived with this condition for over ten years, I was furious when this statement was released. Receiving treatment for this condition was already hard enough prior to this. It took over six years for my pain to be taken seriously, let alone treated and add another four years after that to find a specialist who actually performed the correct surgery method to remove the tissue from my organs. My case is so severe that I was requiring surgery every six months to manage my pain, yet ANZCA deems it unnecessary? If I were to go without these surgeries I would be completely disabled from pain, my bladder, bowel, kidneys and uterus would all stick together – an issue that pelvic floor exercises cannot address.
This isn’t just an issue involving surgery, it’s an issue with women’s pain being taken seriously, which right now is feels like fighting a losing battle. Why this statement is so problematic and causing such an uproar within the endo community is the impact this statement could and will have on not just people currently living with this condition, but women trying to access help with their pelvic pain. This blanket idea for treatment guidelines to follow will prolong the diagnostic process even further and leave even more people suffering from pain that isn’t properly managed.
All we ask is that our symptoms be taken seriously and our disease be treated holistically. This means our pain to be believed and access to various kinds of symptom management. Endometriosis is not just a painful period, we need to rethink it as a whole-body disease.
We should not have to do our own research to ensure we are receiving the right treatment, we should be able to trust our doctors to give us the best treatment option for our condition.
We need steps forward, not backwards.
It is tiring to live with this pain, but it is exhausting to have to fight to be treated.
