Endometriosis has historically been a largely misunderstood condition and while it is gaining in recognition, and we are beginning to understand more about symptoms and treatments, there is still a long way to go.
Endometriosis occurs when endometrial-like tissue, similar to the tissue normally found lining the uterus, is found in other parts of the body such as the ovaries, fallopian tubes, peritoneum and the outside of the uterus. These tissues respond to hormones released by the ovaries, causing bleeding and leading to inflammation and scarring and painful adhesions.
It is said that around one in five teenage girls suffer severe period pain (dysmenorrhoea), and around half of these girls will develop endometriosis.
The possible causes of endometriosis are still unknown, and the symptoms vary widely, in some cases there are no symptoms. This has been a factor in the delays of diagnosis, which are estimated to be between five to eight years on average.
Professor Jason Abbott was part of the team that developed the guidelines, and he recently spoke to the Guardian about the need for clinical research to inform medical guidelines, the lack of research in this area, and the significant costs to individuals and the health system.
“With poor education about pain and menstrual health, a lack of medical research into reproductive issues that affect them, and a traditionally poor understanding in the medical profession of pelvic pain and conditions related to it such as endometriosis, the average cost for a woman with endometriosis both personally and for society is about A$30,000 a year,” Professor Abbott said.
As with chronic pain for many other related conditions, awareness, education and early intervention are key factors in prevention and early management. Dr Susan Evans, Chair of the Pelvic Pain Foundation of Australia, wrote a guest piece for our e-newsletter this week to discuss a new education program that will hopefully make a significant difference to the understanding of endometriosis for a key cohort – teenagers.
“The Periods, Pain and Endometriosis Program (PPEP-Talk), developed by the Pelvic Pain Foundation of Australia, is an age-appropriate, neuroscience-based program that helps girls determine whether their pain is normal, how to manage pain, and when to seek help. It involves a one-hour interactive program provided by a trained educator, followed by an opportunity for students with pain to speak one-on-one with the presenter in the hour after the session,” Dr Evans writes.
“With dysmenorrhoea comes the expected mix of additional symptoms including irritable bowel syndrome, painful bladder syndrome, painful pelvic muscles, dyspareunia, fatigue, poor sleep, anxiety, low mood, nausea, dizziness and impaired cognition. The ease of identifying this group of young Australians at risk provides a unique opportunity for early intervention and the prevention of chronic pain.”
For endometriosis, as with all chronic pain, we need to gain more knowledge through clinical research to find out more about causes, symptoms, diagnosis and treatment. If we can reach young Australians early and teach them about ‘normal’ pain, pain management and how and when to seek help, we might be able to reduce the number of people affected by chronic pain in the future.
At Painaustralia we know many people experience chronic pain associated with endometriosis. As with many pain conditions, our challenge is to work collaboratively with clinicians, researchers, experts and consumers to ensure more people are able to access appropriate treatment.