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Alea's Story "Pain is inevitable, suffering is optional"

Updated: Aug 6, 2020

My journey with endometriosis began at the mere age of 14. One night completely out of the blue I woke up with searing pain throughout my lower abdomen, I was taken to hospital and reviewed by Waikato Hospital's gynaecology team; even though all of my symptoms were pointing toward endometriosis, I was brushed off and told ’14-year-olds don’t get endometriosis'.

This continued for the next 5 months; at least once a month I would be in the hospital getting the same treatment and being sent home after a few days. I found that with my endometriosis pain, it would come in short sharp bursts, which while it was great to not have long-lasting pain, the sharp bursts were enough to cause me to pass out or require morphine urgently. Over these five months, I tried many different treatment options, including the pill which caused endometrial polyps (not fun!).

The severity and frequency of the pain eventually became too much and I had to leave my school to go onto correspondence; this was a huge setback for me, as I became very isolated.

Finally, after being treated as if I was crazy time-after-time I struck a lovely doctor who sat down with me and discussed my symptoms and confirmed that yes, it was most likely endometriosis, and from here she booked me a surgery for June 2011. When VP Singh did my operation he found that I had four patches of endometriosis, in all the areas causing me so much pain (bowel, bladder) so this was a relief; he removed this from me and put in a Mirena IUD.

For the first few months after my operation, I was doing OK until my Mirena started playing up - unfortunately it had gone AWOL and my GP couldn’t find it to remove it. After six months of having it in my body, I couldn’t handle it any more and went up to the hospital’s Emergency Department and had it removed with what could only be described as tongs...being a 15-year-old girl who has had no children, this was NOT a good time.

Once this was removed in early 2012 I was fine for a good two months, unfortunately, I started to get pain again and this cancelled my plans of returning to school. Over the time that I had off at the beginning of the year I didn’t really do a lot, and I became quite insular. I realised that I was letting this disease control my life, which was something I never ever wanted to have happen. So in May I picked myself up, put a big smile on and went back to school! I can honestly say that it was one of the best decisions I made, whilst I still struggled with pain some days, I learnt to manage my pain and not let it control me.

I became involved with Insight Endometriosis after my surgery, and thoroughly enjoyed going to the coffee groups. It was awesome to see women who were older than me had gone onto have kids and lived relatively normal lives. I’ve learnt to live by the motto“Pain is inevitable, suffering is optional”...

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