September 26th, 2012 was the day my life changed forever. I was sitting in my post-surgery bed, contemplating whether I should even attempt to eat my semi- questionable hospital food, when my specialist surgeon walked in. He calmly but solemnly sat down next to me and said “Anna, I’m sorry. It appears that you have Endometriosis.”
I was so happy, I wanted to leap out of bed and hug him.
Why?? Because for years I knew that something wasn’t right but never had the proof. I spent thousands of dollars in and out of doctor’s offices, with no conclusive evidence. I had been told, like many, that my symptoms were due to IBS or lactose-intolerance or gluten or acid reflux or anxiety or fill-in-the-blank, I’ve probably heard it. It wasn’t until I finally switched to a female GP that the right questions were finally asked.
I did a journal of my pain and found that my symptoms waxed and waned with my cycle. Yes, I also had horribly painful periods, but I had thought for years that it was normal, that women were supposed to hurt that much. However, come 2011/2012, I started actually collapsing with pain and I knew it was time to find some answers, even if that meant surgery. To this day, Endometriosis can still only be officially diagnosed through surgery and that’s a big decision for anyone to go through and isn’t without its risks. However, I was sick and tired of being in and out of doctors offices, having weekly UTI’s, low-grade fevers, seemingly random symptoms, intense pain and not knowing what was wrong with me. I decided the surgery was worth the risks.
Endo was found in a handful of locations in my abdomen, including around my diaphragm. On top of that, it was additionally found through biopsy of my bladder that I also have Interstitial Cystitis, commonly referred to as “Endo’s evil twin”. That explains the weekly UTI’s, which in lab results were always inconclusive. Doctors had found an elevated presence of white blood cells and knew I was fighting something, but they couldn’t figure out what...until I took the surgical plunge.
After recovering from my surgery, I felt amazing for about 6-8 months. I hadn’t realized how much I was truly suffering on a daily basis until after my surgery. I’m so grateful for those months after. I was newlywed at that time, and thanks to the surgery, my first year with my husband wasn’t spent with me on the couch. However, the symptoms started to slowly come back. The Endo unfortunately returned. Now almost 3 years later, I’m looking at my next surgery, but this time, I know what I’m fighting. I’m not in the dark anymore.
Living with Endometriosis and Interstitial Cystitis is a huge challenge and I wouldn’t wish it upon anyone, but it’s also one of the best things to ever happen to me. It’s given me tremendous purpose, allowed me to do some amazing work and I’ve met some incredible women along the way. I’m not alone anymore, wondering what’s wrong with me. Instead, I find myself surrounded by absolute warriors, fighting for awareness and social change. Sure, as of today in 2015, I’m not sure if I’ll ever be able to have children, still struggle with pain and there’s currently no cure for Endometriosis, but I believe we’re in the midst of a major Women’s Health Revolution. I have full faith that in decades to come, things are going to change.
To Support Endometriosis Australia head to https://secure3.everydayhero.com.au/charities/2895/donate
endoNo Support Group in the Illawarra, head to https://www.facebook.com/endonoAU