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Meet Georgia

I first developed signs of endometriosis at the age of 14. Entering my teenage years, I had never heard of endometriosis. I had merely learnt about the basics of having a period, heard that it could be accompanied by mild cramps, but not once did I ever comprehend that from that point on, I would be spending the rest of my life living with an incurable disease.

I underwent my first laparoscopic procedure in April 2011 at 15 years old, where I had the confirmed diagnosis of stage 3 Endometriosis which shocked everyone, including my gynaecologist at the time. Since then, I have undergone 14 laparoscopic procedures for the deep excision and removal of stage 4 severe endometriosis. I had my right ovary removed due to the extent of the damage endometriosis had caused over the years, including multiple cysts and ovarian fibromas.

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When I first tell people, including medical professionals that I have had so many surgeries for endometriosis they are stunned because I am so young and saddened that I have had to go through this, but to be honest I consider myself one of the lucky ones. I have an amazing support system, a knowledgeable and caring specialist. It takes the average person seven years to be diagnosed and treated for endometriosis. Seven years. In seven years, the damage can be so severe from the scarring that people struggling with infertility may not even be aware that it is due to endometriosis. In seven years, a student completes an entire cycle of school.

Having endometriosis is awful but in retrospect, I am lucky, because my diagnosis came within 12 months of my first period. My mum was a highly skilled IVF nurse, an amazing mother, support and advocate, who had been diagnosed with endometriosis herself.  I was lucky that she recognised the symptoms almost immediately and was able to connect me to the right specialist that had also previously operated on her.

12 years into living with Endometriosis, I spend my days living with chronic, intense pain. Doctors have discovered endometriosis around my uterus, pelvic walls, bladder, bowel, kidney, ovaries, fallopian tubes, urethra, pouch of Douglas, lower nerves surrounding my 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 12 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 an organ 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 it can either be a slight discomfort where it is normal enough for me that I can get on with my day, but I can feel it there lingering, 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 (which unfortunately is also something that has happened to me so I can make the comparison) and having to deal with knowing that despite multiple surgeries and removal of the disease, it will grow back.  This is something so many people with endometriosis face and it is something that we do not often share because we just want to be able to live our lives as best as we can without the reminder that this does not go away.

From a young age I have been told that the solution to helping the chronic pain and lesion growth is to either stay on the contraception pill or “just get pregnant”. I was first told this at 17 by an emergency department doctor. I didn’t have a partner, I lived at home. A baby wasn’t an option then and it still isn’t now as I navigate my career and being in my late twenties. The older I get the stronger I feel about advocating for myself and demand the treatment I deserve, but this hasn’t always been the case and I can imagine for many others it still isn’t. There have been countless times I have been questioned in the emergency department 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 hospital and that I should be out instead of “chasing drugs”.

It causes far too many people 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 surgeon and pain specialist have dedicated critical 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. 

Endometriosis can often come with other diagnosis, for me it has included painful bladder syndrome, fibromyalgia and even the detection of a tumour 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 medications 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.

What works for some may not work for others and that is okay, it is important that you listen to your body and do what it responds best to. Every person with this illness is different and there are many treatments that we can try, however NONE will cure the disease, only put some of the symptoms at bay.

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 said it hasn’t affected my mental health. Some days are harder than others, but everyone deserves to feel like they have a life worth living and that they can get through the hurdles in front of them. If anyone is struggling whether they have just been diagnosed or are deep into their journey, I strongly recommend seeing a psychologist who specialises in patients with chronic pain. If this is not accessible, there are fantastic online services as well as free counselling that you can utilise. 

We know there is no cure for endometriosis, and aren’t even 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. People with endometriosis deserve advocacy, treatment, and most of all, quality of life. I am hopeful for the future and what is to come. I hope to one day be a mother, and be an advocate for others who can’t speak up for themselves. The seven-year average wait for a diagnosis has to end. With research and foundations such as The Endometriosis Foundation, we are one step closer every day.