My name is Georgia and I am a twenty-four-year-old woman from Melbourne, Australia. A lot of people ask me what exactly is endometriosis when I tell them of my 9 year battle with this invisible illness  and I am often quick to respond with the definition that it is a condition that occurs when the tissue that makes up the lining of a woman’s uterus is present on other organs inside of her body. For most women, when they go through their period the tissue that lines their uterus goes into their body and is discarded, causing no further issues, however for women with endometriosis, that tissue sheds itself and has nowhere else to go but the surrounding organs. What I don’t tell them when they ask about my endometriosis, is how this incurable disease renders me powerless to my own body. The symptoms of endometriosis are chronic pain particularly, but not always, during the menstrual cycle and ovulation, painful sexual intercourse, pain with bowel and bladder use, nausea, lethargy, weight gain and infertility.

I first developed signs of endometriosis at the age of fourteen. I was only just becoming a woman and whilst I was on the path to figuring out who I was and navigating puberty, I never once comprehended that I would spend the rest of my life living with an incurable disease. I underwent my first laparoscopic procedure in April 2011 where I had the confirmed diagnosis of stage III endometriosis and shocked everyone, including my gynecologist at the time, with how severe my endometriosis was for such a young woman. Since April 2011, I have undergone fourteen laparoscopic procedures for the deep excision and removal of stage IV severe endometriosis. A lot of people hear this and are saddened but in retrospect I am one of the lucky ones. It takes the average women seven years to be diagnosed and treated for endometriosis whereas my diagnosis came within 8 months of my first period. My mother was a highly skilled IVF nurse and as an endometriosis warrior herself, I was lucky that she recognised the symptoms almost immediately and was able to connect me to the right specialists.  

I spend my days living with chronic, intense pain that I have spent the past nine years learning how to mask from others. Doctors have discovered endometriosis around my uterus, pelvic walls, bladder, bowel, kidney, ovaries, fallopian tubes, urethra, pouch of Douglas, spinal cord and most recently, my diaphragm. This causes me to not only suffer from pelvic pain but chronic pain throughout my entire body. In the last nine years I truthfully could not identify a minute in a day where I wasn’t in some type of pain. For what has become my “normal” would render others to the emergency department or concerned that their appendix has ruptured. I am in constant discomfort. No matter if I am standing, sitting, walking, laying, running or curled up, the feeling is there. This full body pain, depending on the severity can either be a strong discomfort where it is normal enough for me that I can get on with my day or it can be severe enough that I am sobbing on the floor and feeling like I am completely alone in the world. A severe endometriosis flare can feel like having your appendix has burst a thousand times over and having to deal with knowing that despite the surgeries and removal of the disease, it will grow back.

During my journey with endometriosis I have not always been honest on the effect it has had on my mental health. Endometriosis and chronic pain brings you to your knees and I would be lying if I tried to say it hasn’t affected my mental health to the point where I thought I was better off dead than trying to exist with a silent, incurable and chronic illness. I can now say that through the guidance of my loved ones, specialists and allied health professionals that I am no longer in that headspace.

Endometriosis is a disease that is very good at making you feel alone. Endometriosis causes grief, you grieve what your life could be if you weren’t chronically ill when you wake up from your fourteenth procedure, that lasted for hours, only to hear your condition has worsened since the last surgery only three months prior. Endometriosis can often come with other diagnosis, for me that has been the discovery of painful bladder syndrome and even the discovery of a tumor on my right ovary last year which resulted in a unilateral salpingo-oophorectomy (removal of right ovary and fallopian tube). There are many different treatments for endometriosis, and I have tried them all from natural remedies, pelvic physiotherapy, acupuncture to western medicine and the chemotherapeutic drug Lupron which sends your body into early menopause, including all the symptoms that come along with it. I have gone to many lengths to rid my body of the disease and honestly, it feels like I have been fighting to get better my whole life.

Like many other women both young and middle aged, I have been stigmatised when it comes to seeking treatment or pain relief for my illness. There have been countless times I have been questioned in the emergency department by professional allied health worker’s as to why I know so much about different pain medication, why I need such a high dose to stop the pain, how I know I have endometriosis and why I would spend my weekend again in the ED and that I should be out instead of “chasing drugs”. It is a stigma that has got to end and causes far too many women to feel alone and that they aren’t worthy of treatment. For the most part, the doctors who have treated me are vigilant and trust me to know my body well enough, to listen when I say I know something isn’t right and needs to be investigated. My two surgeons and pain specialist have dedicated time towards my case that has provided me with somewhat a quality of life and hope for a future, something I couldn’t have said I had four years ago.  

There is currently NO cure for endometriosis, and we aren’t yet sure what causes it. Whilst I know my journey with endometriosis is far from over, I will never stop fighting to raise awareness and work towards finding a cure for this illness.

A note from Rachel:

Georgia is just like many women who suffer from Endometriosis, an invisible and incurable disease. 1 in 10 women are thought to suffer from Endometriosis. This month (March) is all about raising awareness and seeking donations to help fund research for ‘Endo’. Let’s get behind these women and help support them to hopefully find a cure! Thank you Georgia for sharing your story. You can donate to Georgia’s go fund me page here — https://hightimefortea.everydayhero.com/au/fight-like-a-girl