Naomi is a corporate receptionist and lives in Lake Macquarie, NSW. She is married with one son.
Now 50, she has been dealing with endometriosis for a long time, most likely since her first painful period at age 13. In the 80’s endometriosis had zero publicity and any issues like this were considered normal and just a “part of being a female”. Most women had no idea there was anything wrong, usually until they tried to have a child, and then it was discovered during infertility investigations. With no internet, there was limited information available and no way of finding others to discuss her issues with. She endured “treatment” with Danazol and in later years Zoladex, both being treatments that do absolutely nothing to help endometriosis. Many years down the track, she felt pregnant naturally, after being told for years that she would never conceive.
Being a single mother since her son was 12 months old, letting endo win was not an option. She had to work and parent, both of which were increasingly difficult and only a steady diet of painkillers made it possible, potentially causing other health issues and certainly not the optional way to live your life and be a functional employee or parent. Her son learnt very early that mummy hurt a lot, which broke her heart. She endured operations by non-experts who did little to help her endometriosis and her debilitating pain just increased. She kept searching for any information she could find, and discovered Yahoo Groups, where for the first time she connected with other endo patients and was able to share information, and learn. With that resource she finally found a doctor who specialised in endometriosis and finally had an ally in her fight. Many years of pain and surgeries followed, even resulting in a rare diagnosis of umbilical endometriosis. With her endometriosis now under control she is keen to help in any way possible to help educate no
n-sufferers about endo so that they can understand what 1 in 10 women go through every day. She is passionate about encouraging people to advocate for their own health, to demand good medical care and not let their voice be dismissed. With GP’s and gynecologists taught little about endo in their studies and so much inaccurate information out there, especially on the internet, it is hard but worthwhile.
She has been involved with Endometriosis Australia since not long after its inception, firstly helping out with the Facebook Discussion Group and since then at functions and fundraisers. From administrating support groups on Facebook to MCing the Endo High Tea in Newcastle in 2017, she is passionate about education and awareness for endometriosis. Over the years she has been involved in many things to help the fight, including the Queensland University study for endometriosis in the 1990’s which was and still now is researching endometriosis and studying the genetic links. In March 2014 she was so frustrated by the lack of media awareness about Endometriosis Awareness Month that she sent a fiery email to multiple news and media outlets, with the end result of an article about her journey with endo being written up in the Newcastle Herald.
I will never stop fighting for better treatment, better care and better awareness about this horrendous disease that robs so many of their health and in many cases their families and their careers. The amount of money that endo costs Australian businesses is huge but it is still brushed off as “womens issues” and this is unacceptable. With Endometriosis Australia I can have a voice and help others to as well.