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My life with Endometriosis

I have had painful, heavy periods my entire life. When I was 19 I was referred to specialists but no one mentioned Endometriosis. I was 28 when I was officially diagnosed. The main reason for my diagnosis taking so long was because I had children, I got pregnant easily. Because I did not have one of the many symptoms associated with Endometriosis I was ignored. I was told “everyone has painful periods.” I spent years wondering if maybe I was just too soft. Maybe everyone experienced this? Maybe it is normal? That is until the 111 calls started. When my youngest child was 6 months old I woke up in the night in the most excruciating pain I have ever experienced. I would easily compare it to the end stages of labour. I could not breathe, I was hyperventilating and apparently as white as a sheet. After an hour or so of this pain not fading my husband called for an ambulance. I was given a huge dose of morphine and kept in hospital for three days. Delivered from one department to another, no one really knowing what was wrong and eventually being discharged with a “come back if the pain returns.” Six months later it came back and once again I was in an ambulance back to the hospital. This time a lovely registrar in the emergency department asked if I had heard of Endometriosis? She had it and thought my symptoms seemed familiar. She organised a referral to the women’s clinic and this eventually led to explorative surgery. The endometrial lining was growing on every single internal organ. I was in surgery for hours. What was supposed to be an hour of exploring turned into a hugely invasive and long surgery. It took me two weeks to feel even somewhat normal. Unfortunately this disease effects roughly 10% of the female population. Think about it, 10%, that is a huge number! Just in New Zealand that is 120,000 women and there are more that haven’t been diagnosed! Growing up I had friends with Endometriosis and I was naive to how awful this disease is. Many people assume it means you get painful periods. They would be right to an extent but it goes far beyond that. The most common symptoms are painful, heavy periods, however this is just the beginning. Most women who suffer from Endometriosis also suffer from bowel/intestinal pain, severe PMS, random bleeding/spotting, pain at other times of the month (ovulation), painful sex, infertility, bladder problems. The list goes on. This disease does not only effect me, it impacts hugely on my family and my relationship. My husband is incredibly supportive but having a wife in and out of hospital and incapable of caring for our children every few months is no fun. My Mum steps in when I can’t parent which in turn impacts on her ability to run her own business and household. I have had to take many many days off work and have had to leave suddenly with little to no explanation. It has even dictated what clothes I can wear, I cannot wear anything too firm around my stomach which means many options of stylish and practical clothing has been removed from my list of options. Two years ago I had a Mirena IUD inserted and I can honestly say this was the best thing for me and my body. It has been suggested that I have a hysterectomy and while I have in theory finished having my children, at 33 the idea of that being permanently removed as an option for my future was very confrontational. This option has reduced my visits to hospital by half, I have been twice in the last two years and has pushed back the more extreme options by a few years. Funnily enough it turns out having my children young (22, 24 and 27) was the best decision I could have made, if I had waited until my thirty’s like many women do I would probably be able to add infertility to the long list of symptoms I have experienced because of my Endometriosis. I don’t know why I have Endometriosis. It can be genetic yet no-one in my family has it. I hope my daughter doesn’t inherit this from me.

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