My Mum started researching endo more heavily—while I was incredibly sick and depressed. She read about a drug called Visanne that was used to treat endo available overseas but not in Australia. We started a change.org petition, which, to our surprise, went bezerk and got 74,500 signatures. Thousands of people left comments on that petition—mainly women with endo. My mum and I read every single one and were in tears every night.
We decided we couldn’t let all these people disappear after the life of the petition. We recognised that there were thousands of women who were desperate for evidence-based information, validation and a platform to share their stories. We had access to the best health care and best doctors but we still felt like we were in the dark. We knew we weren’t the only ones. What about the women in rural Australia? We just had to do something about it and let women know they were not alone. More importantly, we wanted to be the link between the doctors and the patients and give patients like me and carers like my Mum the information they so desperately needed.
We created EndoActive on Facebook. Shortly after we started out page, Bayer announced to us that our petition was successful and that they would release Visanne in Australia, which they did in March 2015. EndoActive was well on its way by then.”
“I’ve been pain-free for over 2 years now. I’ve managed to get my symptoms under control and learned the importance of self-management. However, before that happened I was totally unable to work. When your pain is at its worst, working is incredibly difficult, if not impossible.”
“Being an EndoActivist is bloody hard work. Because I work completely voluntarily for EndoActive and I’m studying full time I’m often going between an odd paid job (if I’m lucky), uni (I just finished a Master of Health Communication and just started a Master of Philosophy Medicine), assignments, doing interviews or media stuff for EndoActive, communicating with girls who have endo and have written to me asking for help, working on EndoActive and keeping our facebook page/website/blog/million emails manageable with my mum and co-founder, Lesley.”
“Helping other women feel less alone and empowering them with information is the best part. If I can help a woman in any way—whether that’s living a life with less pain or having the confidence to talk about endo with her family, partner and friends—I’m happy.”
“The most challenging part is not letting the stress of being pulled in a million directions get to me. Listening to music and going for walks to get out of my headspace is the best remedy for that. I have to try to stay calm to keep my endo symptoms at bay. (They flare up when I’m stressed). I often feel anxious and have trouble sleeping so I listen to podcasts every night to fall asleep and follow an anti-inflammatory diet. That really helps my endo.”