June 22, 2022

Being diagnosed and living with Endometriosis

Endometriosis, more like endometri-oh sh*t, am I right?!

What is it you may ask?

Helene and Dominique from The Spoonie Society are here to drop some knowledge and share how they look after their bodies while living with endo. Take it away Dominique…

Endometriosis unfortunately affects at least one in 9 girls and women in Australia, so if you’re reading this and thinking ‘me too’, you’re certainly not alone. Endo occurs when endometrial-like tissue, SIMILAR (emphasis on similar) to the tissue that is normally found lining the uterus, is found in other parts of the body. To name a few, they could be the fallopian tubes, pouch of Douglas, ovaries, or the bowel, basically every internal organ except the brain. Although the cause of Endometriosis is unclear, the only known way to accurately diagnose Endometriosis is through Laparoscopic surgery, with Excision surgery performed by a qualified Excision specialist being the leading recommended treatment for reducing reoccurrence rates.

Both Helene and I – Co-founders and directors of The Spoonie Society have suffered for many years with Endo. I had a long journey for diagnosis after having pelvic pain and heavy irregular periods dismissed by doctors for 12 years, whereas Helene’s diagnosis journey was quite different with an unknown ovarian cyst that had ruptured. Very unfortunate circumstances either way.

Endometriosis for us, has affected us in similar ways, as it does with many other people who are diagnosed or even in the process of diagnosis. Your pain is VALID, and you are NOT alone! Similarly, pelvic pain, pain during intercourse and bowel movements are just some of the symptoms that Helene and I both experience. Having both undergone multiple surgeries to gain a better quality of life, we are now at a point where we can somewhat manage our symptoms with a multi-disciplinary team. Our teams are made up of, Endo Specialists, Pelvic Physios, pain specialists, oh and a great Psychologist is a MUST! Looking after your mind when navigating an invisible or chronic illness is paramount. It is not a leisurely ride at all.

When I was diagnosed with Endometriosis in 2019, it was a HUGE relief to know I finally had a diagnosis and could work with getting my symptoms managed and actually get proper treatment. I was told it could impact my fertility, which was always the dark cloud over my diagnosis. So, I went straight into damage control and froze my eggs. Thank goodness I did, because only 4 months after my egg freezing, I said goodbye to my left ovary. Helene also went down the egg freezing path just in time before losing both fallopian tubes and her left ovary too. We often make jokes – because coping and like to say we make one whole healthy person.

When it comes to looking after myself and living with my Endometriosis I look to save on ‘spoons.’ Now, you’re probably wondering what the hell I’m talking about. The ‘Spoon Theory’ is a disability metaphor used to give a visual representation that signifies the decreased amount of both mental and physical energy available for activities. These activities can be as simple as washing your hair or going into the office and represent both essential and productive tasks. Each activity requires any given amount of ‘spoons’ which can only be replaced through rest. Once we’ve run out of spoons, we must rest until we’ve replenished our spoons. There are so many chronic and invisible illness’ covered under the spoon theory and individuals who suffer from these refer to themselves as ‘Spoonies,’ hence, The Spoonie Society!

I find my body requires different movements than I normally would have done prior to diagnosis. I now prioritise walking, yoga and incidental exercise during the day over a high intensity workout or gym session. High pain days are a lot slower, focusing on being kind to myself and religiously using my Spoonie Society heat packs. I was always a savvy saver with money but I’ve quickly learnt I also need to save my spoons to get through a day without over-exhausting myself. One of my top tips for saving spoons is meal prepping for the week ahead. Some of my go to meal prep recipes include the Keep It Cleaner One Pot Moroccan Chicken, the Creamy Pumpkin Fettuccine, the Choc Chip Blondies and the Overnight Weetbix.

As well as having to-do list that is prioritised so I don’t feel guilty for tasks I don’t complete and the learning to say no to invites and outings that I may over commit to.

Helene and I are incredibly lucky to have one another. It’s so special being able to confide in someone who really understands. So, for what it’s worth, I totally recommend speaking up about your journey! Advocate for you and others who are suffering with the same, you’ll be surprised at how many people resonate with your story. That’s how our paths crossed believe it or not, on Instagram after connecting through our personal experiences with endo.

Soon after we met, Helene and I started The Spoonie Society. A community, an ally, and a support. Combining Helene’s background in Fashion and Textiles and my background in Digital Marketing, we put our “one healthy body” together and created Wearable Heat Packs. Since then, we have grown from moving out of my garage, into a warehouse after warehouse and then into a larger warehouse in only 18 short months. We have proudly employed over 12 staff and have donated over $26,000 to charities. Everything handmade right here in Melbourne!

At this point of our journey, with the help of our incredible team, we have turned something as shitty as Endometriosis into pure magic – something positive to assist all spoonies!

Remember you know your body best, if you have any concerns make sure you speak to a Health Professional!