What It Cost Me: Q&A with Georgia from The Endo Journal
by Georgia Stuart
April is Adenomyosis Awareness Month, and as one of the conditions that we provide support for, we’re highlighting the realities of living with a disease that has even less name recognition than endometriosis. Georgia Stuart is a chronic illness advocate and the mind behind the Instagram account @theendojournal which is a hub of information, real talk, and support for those experiencing chronic illness. Having been diagnosed with endometriosis, adenomyosis, and fibromyalgia herself, she is passionate about advocacy and education. To launch QENDO’s April for Adeno, and continuing our theme of “What It Cost Me”, we bring you this very special Q&A with the amazing Georgia.
When did you first start experiencing symptoms of what you now know to be your endo/adeno? How did it affect your life?
I first started experiencing symptoms of endometriosis at the age of 12 when I first got my period. I had period pain, back pain, leg pain, headaches, digestion issues and low immunity. I missed a lot of school throughout my teenage years and ended up failing my HSC (higher school certificate) because of all the missed days, along with having two laparoscopies’ in year 11 and 12.
How long did it take from your onset of symptoms to diagnosis? What are some of the major barriers you faced?
I was diagnosed with endometriosis when I was 17. So, 5 years. I saw multiple doctors who blamed my symptoms on anxiety, hypochondria, my posture, kidney infections. Apparently, I was too young to be sick and that period pain was also normal.
We all know the cost of even being diagnosed with endometriosis/adenomyosis can be high - how much does a laparoscopy set you back?
I’ve had three laparoscopy surgeries done. I think all together I would have spent over $30,000 just on them.
Did you have to see multiple GPs or specialists? I
had to see multiple doctors and specialists yes - so maybe let’s add another $2,000 to that.
Do you have any other chronic conditions that you manage? Yep! I’ve also been diagnosed with anxiety and fibromyalgia
How do you manage your chronic illnesses now, what are some of your personal strategies?
I have the Mirena, I take the pill and also take anti-depressants (game changer!) As well as medicinal cannabis products. I also go to yoga, swim laps and take reformer Pilates classes. I get a remedial massages every 6-8 weeks to help with my widespread muscular pain. I see a psychologist every 3-4 weeks to help manage my anxiety. I’ve previously done acupuncture and pelvic physio which I swear by both! But unfortunately, being a student, I can’t afford to continue atm $$$$$$$$$$$
What barriers have you faced since diagnosis in managing and living with your conditions?
I still experience gaslighting from some medical professionals which I’ve now built the courage up to call them out when they do it / take it as an opportunity to educate them. Expense is a huge one for me as having a multidisciplinary team is essential yet extremely expensive. Especially without insurance! And the cost of cannabis! I can’t wait until the prices start to reduce. As a student I have no savings. All of my money goes on managing my illnesses so I can continue studying and working. I feel quite far behind in life in comparison to my non chronically ill friends.
What has endo/adeno cost you?
It’s cost me all of my sick leave, affected friendships, my physical capability, but most of all my mental health. I’ve lost a lot of self-worth / love / confidence, struggled with depression and health anxiety. I’m doing a lot better now with the help of antidepressants and my psychologist, but still have a long way to go! Healing takes time.
What would you say to a younger version of yourself?
That it’s not all in your head. You’re not a hypochondriac. There are reasons why you feel this pain and there are professionals out there that will help and believe you.
Let's end on a positive note, despite the challenges of living with a chronic illness, what are some things you've gained through your journey?
Definitely starting @theendojournal ! I’ve met so many amazing fellow warriors! And made lifetime friendships! it’s been so incredible, and I’ve learnt so much!
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