Endometriosis UK
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A letter to my Endometriosis

You have slowly been ruining my body and sucking my confidence for years and now I don't recognise myself.

You went undetected for years and in that time caused me to become very ill with anemia. This meant I couldn't work for a while at a job I loved and in a middle management position I had worked hard to have at a young age. I know it's not your fault my employer was unsympathetic and pressured me to get back to work quicker but that was the beginning of the end for that part of my career which I had been proud to have. You have taken my hard work and made it meaningless. I didn't know at the time that the anemia and illness was all due to you, endometriosis, but I do now.

You have also taken my confidence. I used to love travelling and being sociable. Now I am anxious leaving the house. I don't know when you will make me feel ill and that scares me. I am trying to fight back. Its easier some days than others. I feel it's going to be a long battle.

My husband, family and friends are amazing. I feel bad for not being the wife and friend I was before you showed up. Guilt being another side effect of having you.

But the very worst thing you have taken from me is my dream of having a baby. When I found out I had you I was also told the irreversible damage you'd done meant I would not be able to have a baby naturally. IVF may be an option if you haven't affected my eggs. More tests. More waiting. More worry.

I feel guilty, like I have let my husband, mother and mother in law down. A baby would be an amazing addition to our family. It is all I want.

The physical pain you bring I can cope with. The emotional impact is much harder to live with. You have insidiously become the centre of my life. Everything from what I can/can't eat, exercise I can no longer do, where I go and how I feel is dictated by you.

I will fight you. You will not ruin my life. You have taken so much from me. I will gradually claw the real me back. I will be stronger. There will be days when you might think you've won but that victory will be temporary.

You have hurt me in many ways but I will not stay down.

6 Replies
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I just thought I'd drop you a reply to let you know that I read your very powerful letter and i hope that you get the answers that you're hoping for. Best wishes. X

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Ah bless you thank you x thought it might be cathartic and am hoping in the future I will be able to look back and think how far I've come.

Hope you're having a no/low pain day x

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Yes, I have fought it myself. Working within its remit is difficult. I had a brilliant Career, finally I had to admit that I couldn't work. Aged at 40 I tried IVF. It failed, I was very ill during the process, after I got very depressed but I told my brain 'at least I tried'. Since then it's been a spiral down to living day to day with been Ok, in pain, in bed, great occasionally! I generally look well and younger but as soon as I do anything physical or catch something I become very ill and 20yrs older. Even the doctor finds the visual change quiet concerning. No one understands what we suffer. How is it we can be good at 10am, 10.30 in crippling pain, good at 12, at 4 in bed dying of pain all over, looking terrible then at 9 up and wanting to go out?

Joy

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Exactly! I think the variations are so hard to get used to and make it hard for other people to understand. It's a v frustrating illness and I think the inability to plan nice things to look forward to doesn't help the mental health aspect.

Oh bless you re IVF - it's so hard when you feel robbed of something other people take for granted/treat as an inconvenience.

Xxx

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Yes, but to have a child with problems isn't that dream neither. A few of my friends over 40 without Endo have had babies, their babies are not well. One it going to die in the next few years. Born with a growth larger than its adjoining kidney. Neither kidneys are working well. Kidney transplant is need in the next couple of years if she lives and manages to have a transplant is will not give her between 10 and 20yrs before another transplant. The other baby has a incomplete bowel, All 4 values of the heart are not correct. With another child it's deaf with learning difficulties. These are 3 fit women and the unhappiness is apparent! We all think it's our right, but what right? I am glad now I had no child, it was a lovely thought but my Ex left me and now knowing how ill I've been there is no way I could have looked after or supported normal children let alone sick children on my own.

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Yes that's true. Your poor friends to lose a child must be horrific.

I see it more as a dream than a right but get what you mean about how challenging it would be to care for a child when you have endometriosis.

Take care x

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