Unpacking Endometriosis

Hi, I'm Bella - the social media and marketing coordinator at Love Luna and an Endometriosis enthusiast. 

I use enthusiast lightly because while I’m not thrilled to suffer with the condition, I am passionate about spreading awareness and educating others about women’s health.

So here I am bearing it all and ready to unpack endometriosis as a whole. I’ll dive into the condition, what it is and how it manifests alongside my experience with it. Here goes nothing!

Now you’re probably wondering,

(en-doe-me-tree-O-sis) 

For those who don’t know, Endometriosis occurs when tissue (endometrium) that is similar to the lining of the uterus forms on the outside of the uterus lining, and manifests in other parts of the body.

So essentially, the tissue that is meant to shed inside your uterus goes AWOL and attaches itself to places it’s not meant to be and wreaks havoc for the owner of said uterus (not cool endo, not cool.) Now the problem is, this tissue, despite being in the wrong place at the wrong time, still goes about its usual function once a month, bleeding as you menstruate. But because it’s no longer located within the lining, this tissue free bleeds with nowhere to go. In turn irritating the surrounding tissue causing a build-up of scar-tissue, further pain (like we needed more) and adhesions (bands of tissue that can cause pelvic tissues and organs to stick to each other.) So now, I’m bleeding from places I’m not meant to bleed, my healthy tissue is cranky because there are invaders and now my organs are super glued together. Fabulous.

Now you’re all caught up - it’s painful, there’s no cure, and we know very little about what causes it.

Welcome to being a woman.

*for the sake of the rest of this story time, I will refer to Endometriosis as “endo”, and Gynaecologist as “gyno” (I don’t have the brain capacity to write out the full word, misspell it and rewrite, much like you probably don’t want to read big sciency words over and over again.)

I was formally diagnosed with Endo in 2018, but like many others with the condition my story doesn’t start there. I got my first period in grade 9, I was 13 and a late bloomer. Typical awkward kid, braces, no boobs, round tummy… You get the picture. Everyone around me was getting their period and I thought something was wrong with me because I hadn’t gotten mine yet. Little did I know.

I got my period on an unassuming Saturday while on the way to a friends birthday party. My dad was driving me there in a fancy new car with cream leather seats, (it gets better), I was also wearing white pants I’d just purchased that morning. Unbeknownst to me, I exit the car all excited to celebrate my friend’s birthday when I look down on the Italian leather seats and think ‘my god, I’m dead’.

I very quickly wiped up the blood with my cardigan before my dad could see and tied it around my waist to hide the murder scene that had occurred in my pants. Overwhelmed with the excitement of finally being a woman and the terror of my dad finding out I’d potentially ruined his new car I bolted inside to tell my friends the news. One hour into the party the tables had turned. I was buckled over in a corner in the most excruciating pain of my life, thinking my god, this is what I was missing out on??? Screw this. Mum came and got me and that was that. She set me up with Nurofen, Panadol and a heat pack. These items haven’t left my side since that day.

By the time my third cycle came around my mum identified that the pain and symptoms I was experiencing weren’t normal. She said it was time to see a Gyno because she believed I had Endometriosis. I had always known of Endo, mum had suffered with it all her life, but I didn’t realise the extent of the condition until I started experiencing it myself. I saw my first gyno in 2011, where she agreed the severe pain, blood clots and sheer amount of blood I was losing each cycle likely meant Endo. However, at the time I was too young to qualify for surgery and was redirected to the pill to manage my symptoms.

I remained on the pill for almost 8 years, and it did an ok job at managing my symptoms. I chopped and changed, but none were ever able to fully allow me to skip my period, so I still suffered from cramps.

The sick bay ladies had a bed set up just for me, equipped with 3 heat packs, vomit bags and everything I could need. They would sit with me while I cried in pain. They were so wonderful to me and never made me feel bad about what I was experiencing. I’m so grateful for that because I know others haven’t been fortunate enough to have the same experience.

After 7 years of living in pain I gave up on the pill and decided it was finally time for me to go and see a new gyno, and begin the journey towards surgery. In 2018 I had my first laparoscopy, which formally diagnosed me with Stage 3 Endometriosis. The endometrium had spread to my bowel and Douglas pouch. The adhesions had caused my bowel and uterus to stick together (love that for me.) In 2018, the only surgery available in Brisbane was Ablation (laser surgery) where they essentially weed whack the endo and remove scar tissue build up. This meant that the endo will grow back in time and wasn’t a permanent solution.

I got about 2 good years out of my surgery. I was still in pain but it was much more manageable. I could work without requiring time off, and even moved myself to Melbourne to study full-time, something I had not been able to do due to the limitations of my condition. However, in 2020 my endo came back and better (worse) than ever. She went 10-fold on what I experienced pre-surgery. I’ve now been living with the condition for 12 grueling years and have tried every form of pain management available unfortunately with no end in sight. I’m lined up for my next round of surgery this year with my new Gyno. I’m opting for a different and newer form of surgery where instead of weed whacking, they essentially rip the endo out by the root. Slowing down the re-spawning process if you will. 

It’s something I’m incredibly passionate about. I want to scream it from the rooftops so that no other woman has to suffer in silence at the hands of an invisible condition like I, and many other women have before me. I’m so excited to have this platform to freely discuss topics such as this and to take you along for the journey with me. If you are suffering with a condition such as Endometriosis you are not alone. The Love Luna team is here to help you. We see you. We hear you.

Thank you for taking the time to read through this little introduction on Endo, and my journey with the condition. Keep your eyes peeled for more as I continue to deep dive into the wild world that is women’s health.

Until next time,

Please note: This piece is a personal account of the writer, and if you are experiencing any of what has been discussed and we advise you to see a doctor with any questions, concerns or queries. We are not medical professionals.