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More Than The Pain

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Category: Impact on Quality of Life, Impact on Relationships, and Multiple Symptoms.

I had painful periods as a teenager but then I spent the majority of my twenties pain free. I thought I had grown out of painful periods and considered myself very lucky, even though I suffered from on and off anxiety, some depression, and this was always worse around my period. At about 27 I started having cramps so bad I couldn’t go to work some days and had severe fatigue. Eventually, at age 30, I figured this level of pain and associated bowel/fatigue symptoms was not normal and consulted a specialist. They initially told me to leave it be and come in if it got worse. After a terrible flare up I went back and they quickly booked me in for a laparoscopy. I never thought I had endo. I was convinced I was being melodramatic and this was just life; this is not because anyone told me that was the case, that was just what I believed. When I woke up and the surgeon told me I had moderate to severe endo, I was so so surprised but not unhappy. It was a relief to find out all the symptoms and fatigue had a reason behind them and it wasn’t all in my head. I was fitted with a mirena and I spent a year without pain and had reduced bowel/energy symptoms. I thought I was cured.

Over the last month some pain and bowel symptoms have come back. For now it is manageable and I want to avoid surgery if possible. I play a lot of sport and time away from exercise is something I really hate. One day after my laproscopy I went for a four km walk, hobbled over like the hunchback of notre dame. Honestly, I really struggle not being able to do anything physical, so I want to avoid this! Fingers crossed I can. I am now on progesterone, hoping I can settle this flare up and then I can hopefully go off this medication. Who knows though.

I think for me, the hardest thing about endo is the fatigue and the bowel stuff I get. Sometimes I am so constipated/bloated I can’t fit my trousers. Many days I feel 100% and book in gigs and festivals and all these intense social activities because I am feeling good with high energy, but if they come around and I am having a flare-up I just don’t have the energy for socialising and partying. I do make myself go 90% of the time, but it is a huge effort. I hate cancelling on people- you feel so flaky and nobody really can relate to the fact that although you’re not necessarily curled up in pain, you’re so tired and your belly is bloated like a balloon and you feel very emotional. I feel so inconsistent. 

One thing I am proud of is how healthy I keep myself. No matter how bad I am feeling I will do something active and eat well and generally look after myself. I know friends, family, exercise, diet, and sleep are all so important and I do everything I can to improve my wellbeing. Endo is out of my control so I do everything in my control to help myself. I know I should probably try a FODMAP diet though, but I don’t really want to because I just love onions and garlic! 

Anyway, that was a long story and I am aware it is nowhere near as bad as other people’s. But it feels good to write it down, anyway.

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