Today is March into Yellow which is a day dedicated to raising awareness for endometriosis and providing support for those who are diagnosed, are in the process of diagnosis, or have a close family or friend who is affected.
We sat down today with local high school teacher Alex, who is 27-years old and has been diagnosed with Endometriosis (stage two, severe) and Polycystic Ovarian Syndrome (PCOS) to discuss how Endometriosis has impacted her life.
Q. How old were you when you were diagnosed?
“In 2015, at 22-23 years old."
Q. How long did it take to get diagnosed with Endometriosis and how did you feel once you were diagnosed?
Alex spent over a year visiting her local GP, alerting them of her pain as well as other reoccurring symptoms including fatigue. After switching to another GP, Alex was given a referral to a specialist gynecologist, and discussed her symptoms further here. Alex underwent exploratory surgery, and was diagnosed with endometriosis. It took a lot of self-advocacy to get diagnosed, and to be heard.
Q. How does Endometriosis affect you?
Alex claimed that, “on a scale of 1 to 10, most days sit around a 3 – 4 pain level” demonstrating that most days she is uncomfortable, on top of other symptoms including fatigue, and has recently developed a new symptom, being nausea, which came up in a recent flare up.
In her teenage years, Alex felt super self-conscious as her menstrual cycle was impacted and didn’t sleep over at anyone’s house, and now in adulthood struggles to make commitments as she cannot predict what Endometriosis will bring on any given day. This can impact her social and work life greatly. Further, Alex follows a healthy diet and exercise regime but due to Endometriosis, she struggles to lose or gain weight, as she finds it does not fluctuate or budge.
Financially, having Endometriosis is costly even when Medicare is available as she still has to pay an excess fee, as well as expensive health insurance bills. Alex believes strongly in being well informed about her illness, and learnt how to read ultrasounds in order to empower herself.
Q. What would you want people to know about Endometriosis?
Alex states that, “it exists. For people who are worried they have it, there are specialists who are educated. For everyone else, it hurts and I am in pain. Sometimes I don’t know I am in pain. Sometimes I’m angry at everything [in regards to the mood swings Endometriosis causes]”.
Q. What does the term ‘invisible illness’ mean to you?
Alex replied, “it means that when I say I feel sick, people say I don’t look it. When I take a day off, people ask if I feel better. People don’t get that about chronic illnesses. I don’t just feel better”. Additionally, Alex notes that she feels “like I have to overcompensate my illness” as people cannot see what she endures.
Things to know about endometriosis
- 830,000 Australians experience endometriosis at some point in their life, with the illness often starting in adolescence.
- Diagnosis often takes 7 to 12 years, as the symptoms vary from person-to-person.
- Endometriosis cannot be cured or prevented at this stage.
- Endometriosis is not a sexually transmitted infection (STI), which means it can't be caught from someone else.
For more information on endometriosis, head to www.endometriosisaustralia.org