I was in my early 20’s when I was first diagnosed with endometriosis. After years of painful and debilitating periods and trying more contraceptive pills than I could count, a genuinely concerned and highly knowledgeable GP recommended me to a gynaecologist. My initial scan confirmed the chances of having endometriosis on my ovaries was high, and I quickly advanced to my first surgery. I woke up to my surgeon explaining I had stage 4 endo (essentially the worst of the worst) and that it’s likely I will need to have my left ovary removed as it was so badly affected. I was overwhelmed and terrified.
6 years on, 3 surgeries later and several meetings with different health care professionals, I proudly still hold onto my left ovary but more importantly, a clear understanding of what endo is and where to turn for accurate advice.
My greatest challenge so far has certainly been that; the struggle in finding out what the hell ‘endo’ means and who I speak with to get help. Unfortunately, moving to a remote location has only amplified the lack of local resources for me. For those who don’t know, I’m from the Yarra Valley in Victoria but moved to county NSW in 2021 after meeting my partner Andrew on Farmer Wants a Wife. We live in a town of approx 300 people and finding a local and regular doctor to assist with my needs has not been possible. So many others who live in rural locations face similar challenges where the required healthcare is simply unavailable in their area. Luckily, there is now solid information online and I can genuinely say the first place you should turn to for easy-to-understand endo facts is Endometriosis Australia. The second would be to find yourself a GOOD GP (not to be confused with an average one) even if it means needing to travel or virtual appointments.
Something that isn’t so commonly discussed about endo is anxiety. There’s a real stress about knowing you’re going to be in a lot of pain around the time of your period and ovulation. There are times when I physically can’t move from bed, despite important commitments, or times when I need to sit on the toilet for an hour or more due to my irritable bowel syndrome and endo being on my bowel. PMS is another toughy, where I’ll feel completely out of control of my own emotions, causing more anxiety. Endo can be as mentally debilitating as it is physically, and that is very hard for others to understand.
Alas, it isn’t all doom and gloom! The research and findings that are being done every day is increasingly revealing a greater understanding of how to best manage endo. My favourite learning from my endo experiences is that our magical bodies can conceive with or without endo. That’s extremely important for me as I desperately want a million cute babies running around the farm.
Speaking from my own experience, having a chronic disease has empowered me. I’m grateful to have the opportunity to tell my story so others can relate and know their physical pain and anxieties are all a part of it. There’s always comfort in knowing you’re a part of a community of warriors who are going through the same thing that you are.
No endo sufferer is alone and that is a beautiful thing.