Over 830,000 people live with endometriosis in Australia.
That’s about 1 in 9 people assigned female at birth and tens of thousands of hospitalisations every year.
With a 7 year delay in diagnosis on average, endometriosis is widely misunderstood, underdiagnosed and underfunded.
What is endometriosis exactly?
Contrary to popular belief, endometriosis (aka endo) is more than just pelvic pain. It’s a progressive, chronic condition that impacts the whole body.
When you have endo, cells that are similar to the lining of the uterus (aka the endometrium) grow elsewhere in the body, particularly the pelvis.
To be clear, endometriosis ≠ the endometrium.
Endometrium: The cells that form in the endometrium (uterus lining) shed when you have your period.
Endometriosis: The cells that form outside the uterus - which happens when you have endo - don’t shed with your period, they just stay there and keep building up over time.
This build up of cells outside the uterus leads to inflammation, scarring, cysts and even adhesions, whereby organs stick together in certain places. Oh, and it’s extremely painful. However, endometriosis is more than endo cells existing outside the uterus. It’s a complex interplay of cells, hormones and the immune system.
Endometriosis is an inflammatory disease that’s affected by hormones, but not caused by hormones. On top of the debilitating pain, endo can also affect fertility, cause fatigue and seriously disrupt daily life.
How do I know if I have endometriosis?
Some of the most common symptoms include:
To make things even more difficult, right now the only definitive way to obtain a pathological diagnosis of endometriosis is by laparoscopy surgery. The time and cost associated with a laparoscopy - not to mention the notion of surgery itself - is a barrier for many.
While endometriosis is more common in those assigned female at birth, it can occur in men too. Only 20 cases have been reported in men, compared to 1 in 9 women worldwide, but even so, it is (quite painfully) possible.