Sure enough, I HAD ENDOMETRIOSIS.

March 24, 2015

Grade 5,  2009, I got my first period. I was an active 11 year old, I was smart, tall and very confident.  I loved animals, and was determined to become a vet when I grew up. As a result of this, my parents had organised to take me on a trip with the CSIRO to look at wombats.

It was 6am start, a hot day, in the middle of summer and there were 4 of us crammed into a little car; my parents, brother and myself.  I was so excited, wombats are pretty cool right?
I had expected the day to be awesome, but it was far from it.  I ended up getting my period, and curled up in the back of the car the entire day. NOT COOL

My periods were extremely painful from the day I got it, I missed 2-3 days of school each month and had started taking magnesium tablets to help cramping.  I thought the pain was normal I had NEVER experienced a normal period so had nothing to compare it to. 

Gradually, my cramping got worse and worse and the magnesium stopped helping. I was taking Ponstan by July of 2009 and regular Panadol and Neurofen  throughout the year. 

 

In January 2010 I was admitted to hospital. 

I come from a family of SCUBA divers , my parents both dive, my parents friends all dived. Over a long weekend we had decided to go on a diving trip to a small town in South Australia called Edithburgh. Myself, my brother and a few of our friends who had come with us were playing a game of basketball at the caravan park where we were staying. I ended up accidentally being hit in the stomach with a basketball and having sudden excruciating pain, I couldn’t breathe as it hurt too much. After a short while the pain disappeared and I rushed back to our camper trailer where my mum was cooking dinner. I didn’t mention anything to her, because I felt fine. 

The following day we packed up and drove back to Adelaide, it was a 2 and half hour drive home and I was busting to go to the toilet by the time I reached the front door.  I was busting, I felt like I couldn’t hold on but I wasn’t peeing, I couldn’t pee. I pressed on my stomach, thinking it would make me pee and heard a “squelch” kind of sound and was suddenly in pain so excruciating that I couldn’t even get off the toilet. I managed to get to the ground and crawl to my parents bed, where I screamed out in pain for my mum. 

My dad had to carry me to the car, where I was taken to hospital. 

The hospital sent me home that night, without doing an ultrasound, only taking bloods. 

The next day, still being unable to move in agonising pain I went to my GP who organised an emergency ultrasound. While booking in at the desk, I dropped to the floor and an ambulance was called. 

This time I was admitted to the paediatric ward and underwent 3 ultrasounds over 1 day, lots of blood tests and was kept for 3 days without food. 

On the 3rd day a gynaecology team saw me and decided to perform surgery, as they weren’t sure what the ultrasound was showing. They didn’t tell me, but my mum was made aware that they thought I had a tumour. 

It turned out I had a haemorrhaged ovarian cyst. 

I was told to go on the pill, and didn’t have a problem for another year. 

 

My periods were still painful, and in January of 2011 I was again admitted to hospital for another ovarian cyst, this time not severe enough to require surgery. I again saw a gynaecologist, who again told me to go on the pill as well as telling me that period pain was normal. She told me that some girls had period pain that was so severe they needed to come to hospital by ambulance. 

I carried on thinking period pain was normal, but every month I would end up in hospital until midway through the year I was in so much pain each day that I was in hospital nearly every week. 

Over 2011, 2012 and 2013 I had accumulated more than 60 hospital trips, and this really isn’t an overstatement.  In 2013 i started collecting my wrist bands. 

With all these hospital visits you would assume there would have to have been something wrong with me, but according to the doctors there wasn’t. Yet I was in so much pain that I missed school, I couldn’t walk or get out of bed. 

My parents were beyond distraught, my mum had to quit her job and my dad cried often. We saw every specialist for every part of the body and every doctor told us there was nothing wrong with me, said I had abdominal migraines or that stress from school was making me sick. 

 

In 2013 my grandma mentioned Endometriosis. My symptoms fitted exactly, and my mum and I pursued gynaecologists once again, this time telling them that we thought I had Endometriosis. 

Every gynaecologist I saw said I was too young to have Endometriosis or that they didn’t think I had it, it was often brought up that if I had Endometriosis it would have been seen during my laparoscopy at 12, but at 12 who would look for Endometriosis? 

My mum and I finally found a gynae that was willing to perform a laparascopy, and surely enough I HAD ENDOMETRIOSIS. 

 

Upon waking up from my surgery, the first thing I asked the nurse was what they found. IT WAS THE BIGGEST RELIEF of both mine and my parent’s life to see the note the doctor had left reading “Jasmine, you have mild endometriosis which I have treated”, but sadly 5 weeks later I was back in hospital with more pain. 

 

I was in hospital over Christmas, again with doctors telling me there was nothing wrong with me. I decided to go on holiday with my family to Ballarat, Victoria and there I had another laparoscopy to remove another ruptured cyst and my appendix. I had Endometriosis in my appendix. 

I was pain free for a little while, but by March I was experiencing pain again. 

It was by this time that my mum had found Endometriosis Australia’s page, and read a story written by Teena and found out about the 2014 Endo March event in Adelaide, we went and for the first time I met other women who were experiencing the same problems as me. 

My now specialist was talking at the event, and it is thanks to the organisers of Endo March 2014 that I’ve now been able to start living my life, my specialist gave me my life back. 

 

I had my 4th laparoscopy with her on July 15 2014. I spent 4 days in hospital, and a few nights in ICU with complications from my surgery. My surgery went for 3 hours and lots of old and new Endometriosis was excised. 

I was told that had I have waited another month for surgery, it’s likely that I would have lost my bowel as Endometriosis was already present on my bowel, as well as my bladder and other organs. 

 

This surgery allowed me to go back to school, and have been in a lot less pain than I was prior to my surgery. 

I see my gynaecologist every 3 months, am now seeing a pain specialist and am passionate about raising awareness for Endometriosis, especially in teenagers. 

Endometriosis not only effected my education but also my social life, I stopped doing things normal teenagers do, and lost 4 years of my adolescence. 

Endometriosis Is a horrific disease, with more research being needed. Education of Doctors, Surgeons and Women are needed to reduce delays in diagnosis and better treatment and management options. The rest of the world needs to be talking about endo, let’s start the conversation. 

 

I’m now 16, and am only a year away from going to University to work towards becoming an specialist in Endometriosis myself. 

 

 

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