Endometriosis
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Endometriosis is a chronic, inflammatory disease where tissue similar to the lining of the uterus (the endometrium) grows outside the uterus, most often in the pelvic cavity (the peritoneum) but sometimes in areas not connected with the uterus, like the bowel or bladder. In fact, endometriosis has been found in every major organ in the body.
It is believed to affect approximately 1 in 7 women in Australia and 190 million people worldwide. Despite it’s prevalence, it takes on average 5-7 years to receive a diagnosis and a woman will generally see up to 5 doctors before she gets the diagnosis.
Endometriosis is also expensive. In addition to medical expenses like doctor visits, scans, surgeries, medications, alternative treatments, and medical devices (such as TENS machines), there are other financial impacts. These include lost income from missed work, university, or school, as well as the time spent attending medical appointments. In 2017, the annual economic cost of endometriosis in Australia was estimated to be between $7.4 billion and $9.7 billion.
Despite this, endometriosis is grossly underfunded, under-researched and under-resourced. In 2023, the Australian Government allocated $10 billion to health spending, of which $58.3 million (or .58 percent) was allocated to endometriosis. The equivalent funding for diabetes - which affects the same number of people - is $141.1 million.
so, what is endo?
what are the symptoms of endo?
Endometriosis affects people in a lot of different ways. The most common symptoms include chronic pain, fatigue, heavy menstrual bleeding, bladder and/or bowel dysfunction, and infertility. Those with endometriosis are at a higher risk for heart disease and early menopause, which is associated with an increased risk of bone thinning (osteoporosis) and dementia. Endometriosis is also linked with less common ovarian cancers, and there is some research to suggest it may be associated with an increased risk of other cancers as well as some autoimmune conditions, like lupus. In some cases, a person will experience no symptoms.
Endometriosis has many other impacts on a person’s quality of life that are difficult to quantify. One major area affected is relationships. The chronic pain associated with endometriosis can make intimacy and sexual activity incredibly painful, which can lead to emotional distress and feelings of isolation.
The disease can also have psychological toll. The repeated invalidation of symptoms by medical professionals can have a significantly affect emotional and mental well-being, making the disease even harder to manage.
DID YOU KNOW?
One of the most common signs of endometriosis is excessive period pain.
Remember - period pain should never be so severe that it stops you from living your life. If it's causing you to miss school, work, or anything else you love, it's NOT normal, and it's time to talk to your GP.
how is endo diagnosed and managed?
A clinical diagnosis can be made based on symptoms and possibly ultrasound and MRI (which is getting better at identifying the disease). However, a negative MRI or ultrasound does not mean there is no endometriosis. Currently, a surgical procedure called a laparoscopy is needed to definitively diagnose the disease. During this procedure, a small camera is inserted into the abdomen to visually inspect the pelvic area. If endometriosis is suspected, a biopsy of the tissue is then taken during the procedure to confirm whether it is endometriosis.
There is currently no cure for endometriosis. A first line treatment for the disease is generally an appropriate dose of pain medication, alongside a TENs machine and a referral to a pelvic floor physiotherapist. Medical professionals may also prescribe hormonal contraception, as it has a good record for managing many endometriosis symptoms. There is no one right treatment path, and the disease may be variably managed through personalised treatment of your symptoms. Many people require multidisciplinary surgery, medication and lifestyle adaptations. The key is to gather information and work closely with your doctors to make the best decisions for you.