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The “gift” that keeps giving… by Nikita

I was first diagnosed with Endometriosis when I was 21. Thinking about it now, I have probably had it since I started puberty at 14, as I had horrific periods. I went on the contraceptive pill at 16 which doctors told me probably helped hold the endo back for years until it became a serious problem. At 19 I would have almost daily abdominal pain and I could not take it anymore. I went to the doctors who tested me like a Guinea pig and referred me to a heap of different places until I was finally admitted into surgery and diagnosed with stage 3/4 endometriosis. The endo was EVERYWHERE. It had spread all around my abdomen and had covered every surface it could, except for the ovaries. After that, I was told I would be fine and to be fair, I did get a few months of freedom. Then I started getting my periods again and getting the same pain as before. It hadn’t even been 1 year since my surgery. At 21, I was on 7-8 different medications to help cope with the pain. They put me on the pill, as well as having the Mirena, which basically means I’m a hormonal b***h sometimes. I have days where the pain is so bad that I can’t move, I can’t talk, I can’t live. I’m lucky that I have a supportive partner who encourages me to get up and take some medication while he heats up my wheat bag. I went back to the doctors so many times to tell them I was in pain and it was unbearable. I got the same response every time, “unfortunately with this disease there’s just nothing we can do”. After kicking up a fuss for a while my doctor decided to do another surgery less than a year after my first. She found more endometriosis as well as several adhesions and cysts on my ovaries. I’m now 23 and it has been 3 months since my second surgery. I still have daily pain. I visit the GP, get tested for everything and get physically checked and then the tests come back negative and then the doctors don’t know what to do “it’s probably your new Mirena, let’s just wait and see if it eases”. When I was first diagnosed with endometriosis, I didn’t

how much it would affect my day to day life. The pain makes it hard to go out and do anything, the bloating makes it hard to fit my clothes, the depression and anxiety make it hard to find hope and continue on, the fatigue makes it hard to concentrate and focus at work, the medication makes me gain weight which makes my self confidence take a massive hit. I take all the drugs they prescribe me, I go to a pelvic health physio, I do my yoga, I have taken irritable foods out of my diet (I miss coffee) and have started eating food known to help reduce inflammation and bloating, I have extra fibre. As well as this, it isn’t talked about often but sex is painful. I enjoy it but afterwards I find myself in extreme pain, every time. I am doing everything I can to stop this disease but it just won’t quit. It affects everyone around you as well. A lot of people don’t know what it is or they don’t understand the extent of it. They try to understand but they will only be supportive for a certain amount of time. After the 4th or 5th time you complain about the pain or take a day off work because you physically can’t move, people think you’re just lazy and are being dramatic. I hope to see further research into this disease as I just want to be able to enjoy being young. I feel like this disease has robbed me of my prime young adult years. Thinking about the future scares me. What if I have a daughter and she gets endo. I would feel terrible. At the end of the day, it’s more than just pain, it really can be a debilitating disease and we need to find a way to stop it. Until then, stay strong and keep fighting.

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