Up until recently….we never got heard

October 4, 2015

 

I’m going to be honest, when I was first asked to write this, I possibly stared at a blank page for the better part of an hour. I have so much to say, there are so many women with so much to say, and, up until recently….we never got heard. 

 

 

I’m going to give you some numbers: 

9 – when my period started

19.5 – age of diagnosis

6 – laparoscopies to remove stage 4 Endometriosis and my left ovary

2 – surgeries to implant a stimulator into my spine to help with my chronic pelvic pain and nerve damage from surgeries

1 – colonoscopy to rule out endometriosis in my bowel

Countless invasive ultrasounds

7– GYN specialists  (4 excision specialists)

1 – round of egg freezing 

Countless medications to help side effects of Endometriosis 

 

This is just since I was nearing 20 all these procedures landed me with the diagnosis of stage 4 Endometriosis, Adenomyosis, Polycystic ovaries (1 ovary left now) and a quickly declining AMH, I turned 25 last month. 

 

This. Is. Not. Okay.

 

My story started at 9 years old, with a mother who tried everything she possibly knew to get me help. But, no one would help us, no one would listen. So I went years, untreated and undiagnosed. When I met my now fiancé, he also tried tirelessly to get me help, and continues to help me daily with the consequences of Endometriosis. I had no idea what life had in store for me, the 10’s of thousands of dollars I would spend on treatment instead of traveling, how much financial strain I would place on my relationship needing medications, surgeries, fertility treatments etc. The fact is, it shouldn’t have had to be such a fight to be heard and seek treatment initially, but it was. From day one it has been a battle and I’ve had to fight hard, and it continues to give me some of the hardest decisions to make. 

 

Endometriosis Australia is working incredibly hard to bring awareness and education to a disease (for both those diagnosed and the community) that is destroying the lives of women from a young age. 

 

The awareness Endometriosis Australia is bringing makes me feel brighter about the future of those being diagnosed now. The care and support they will receive because 2 amazing women wanted to support and change the lives of women suffering with a very ‘taboo’ subject – Endometriosis.

 

I feel better knowing that a 9 year old girl today, is going to have the education and support that is slowly building backing her up. Helping her make the right educated decisions to help both her quality of life and future fertility. I feel better knowing I can talk about this, to my friends and family. I made a big leap this year speaking about this to those at work. I don’t feel like that 9 year old girl I once was, I am strong, educated and supported. I have come to a crossroad of managing symptoms until we try to conceive and I have a hysterectomy (for my Adenomyosis) I know I am making the best decisions for me. I don’t know if things will ever be “okay” – but boy am I hopeful for women of the future and I thank Endometriosis Australia for a lot of that!

 

P.S – Thank you to all the mums, dads and partners who over the years have fought so very hard for our right to proper medical care. Who love us unconditionally, through sickness and in health (as little as that might be). x

 

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