By Sophie Burns
My name is Sophie Burns and I was diagnosed with endometriosis when I was 21 years old.
When I was diagnosed I was extremely uneducated about Endo, I had never even heard of it and by sharing my story I want to help other women learn from my mistakes.
I remember my whole life from when I was a young girl going through my ‘time of the month’ was an extremely tiring and painful process but even at school you were taught that your periods can be painful. As a fairy active young girl It wasn’t until I was missing days off school or missing training due to my period pain that I thought there was something wrong. It was then at 14 years of age I was diagnosed with an ovarian cyst.
The follow years were much the same, I would see my local GP and he would neglect my concern for my pain and symptoms saying most young girls will get painful periods.
When I was 18 years old I was hospitalised for the first time with extreme lower back pain and my parents were told in simple terms that I was “faking it”.
My second hospitalisation was when I was 20 years old. I remember the pain I felt in my stomach so clearly to this very day is was like nothing I had ever felt before. After checking for a kidney stone, gallstone and nothing to be found I was sent home.
I was walking around with a disease nobody could see and only I could feel…I felt alone with my pain, no one was understanding what I was going through and some people believed I was just ‘faking it’.
The next time I went to the doctors I couldn’t see my regular GP I saw another available doctor and after going through my symptoms she simply said to me… “are you sure you don’t have endometriosis?” Fast track months later I had my first laparoscopy surgery (ablation) and was formally diagnosed with endometriosis. Both my ovaries were almost completely covered, my left ovary had connected to my bladder and it was also found through out my pelvic floor. This is what had been causing my pain for all these years.
I am now only learning I made two mistakes back then… I didn’t see and endometriosis specialist, just a regular gynaecologist. Secondly, I didn’t research into what types of surgery was available and should have had my endo removed by excision (they cut it out instead of burning).
This all leaves me to here, after returning home from a 6 month back-packing holiday were I knew something wasn’t right, I sought advice from my gynaecologist who told me my endometriosis had definitely not returned as it had not come up on my ultrasound.
For the first time in my life I knew something wasn’t right and I stood up for myself and sought other medical advice and I am so glad I did…
I am just about to turn 24 years old and have just had my second surgery.. the correct excision surgery with an amazing endometriosis gynaecologist specialist.
Not only did she find ‘a lot of endometriosis’ through out my pelvis, I was also diagnosed with Adenomyosis (a sister disease to endometriosis) which only cure is a hysterectomy … another disease I had never heard of. As an almost 24 year old it’s is a very comforting and upsetting thing to hear but out of the question until I have children.
My advice to every women who is suffering is to listen to your body, you know your body better than anyone else, keep searching till you find the answers you are looking for.
Endometriosis is a debilitating disease, it effects your quality of life, can effect your fertility, and many other many things. It shouldn’t be treated lightly.
Luckily there are treatments that can help, seek medical help from an endometriosis specialist only, excision surgery is the gold standard for endometriosis treatment, Birth control can help control your symptoms, acupuncture can help with pain management, and also diet and exercise!
And most importantly remember endometriosis is NOT just bad period pain. Most endometriosis can not be detected by ultrasound.
I hope by sharing my story it helps create awareness for endometriosis and helps other women seek answers!