A Letter To The People Around Me...

Posted , 3 users are following.

To those who ask what is wrong with me,

Endometriosis. That is what is wrong, and until you deal with exactly what I do you cannot understand. You may have heard of it but it wouldn’t surprise me if you haven’t. Although it is very common many people have never heard of it. If you haven’t heard of it, feel free to ask what it is, I know you’re curious, but please be prepared for an extremely simplified answer because what it is and what it affects is a long and personal story and unless you want a few hours on the effect it has on my life, the simplified version is a lot better. The simplified version is, my body has cells that grow in the wrong place, this causes my body to constantly attack them causing excruciating pain, low immunity, exhaustion and whole longer list of symptoms. The cells also try and shed away each month causing internal bleeding, inflammation and scarring, and believe it feels worse than it sounds.

To the doctors and specialists,

Why did it take you so long to figure out what was wrong? I know the easy option is to give me Panadol and send me home, but that’s only the easy option for you. It doesn’t help, I am still in agony and still confused as to what is happening. I know you say the pain is normal, but it can’t be, it can’t and  I don’t like being made to feel like I am just being a drama queen with the pain, because you aren’t the one dealing with it. I appreciate when you did finally give me an answer, it gave me hope that it would all be sorted out. Then I found out there is no cure.

To my colleagues and managers,

I am sorry that I can be moody, have a short fuse or have days that I am not working to 100%. It frustrates me just as much and if not more than you. It frustrates me that I have no control over how I am feeling, being in agony and still trying to work a 40 hour week is tiring and on top of this trying to deal with the exhaustion from being up all night every night for the past week unable to sleep because of the pain. It really takes a toll and I promise I am trying my best, but sometimes it is just hard. I appreciate when you support me and try to be sympathetic about how I am feeling, but I don’t want sympathy only understanding. I know when you offer me time off work when I’m not feeling well you are trying your best to help, but the thing is, this doesn’t go away, in fact, it is there more often than it isn’t. I still have bills to pay and mouths to feed and really who wants to employ someone who needs to be in bed recovering at least two weeks out of every month? I know no one wants to employ someone who is always tired and can’t work to their 100% either, but I still need to work, I promise I am trying my best and I thank you for your support.

To my close friends and family,

I am sorry that you get the worst of me. You get the leftover mess at the end of a 40 hour working week in pain and physically and mentally exhausted with life. I apologise that I don’t always want to go out with you, I am sorry that I say no I can’t I’m too tired and too sore, I know it isn’t fair but it is not that I don’t want to be there, I really do. It is just that after a long week at work and a consistent fight against my body that I am losing with no control I am tired and I am sore. I am sorry about the calls with tears running down my face when I don’t know what to do with myself because the pain just gets much. I am sorry I am always sick, either vomiting because of the pain or everything else that I catch because my body is constantly trying to fight cells that it thinks shouldn’t be there, leaving it run down constantly and exhausted. I am sorry you have to see this side of me, but your support makes me realise why I chose you as friends and makes me feel lucky to have you as my family.  Last of all, I just want to say thank you, thank you for being there for me and doing the best you can to understand what is going on, it is a hard road but I couldn’t do it without you.

 

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7 Replies

  • Posted

    Hi Jayme. I'm so sorry the evil endometriosis has taken over your life whilst you struggle to keep going. 8 months ago I could have written this. I couldn't bend down to pick something off the floor where all my pelvic organs had fused with the stuff. I was referred to a specialist and although drastic I had a laparoscopy to remove as much as they could and release all organs and then on zoladex (that part not good as my body reacted to the the zoladex and had worst migraines ever so personally wouldn't recommend) before having a total hysterectomy including ovaries and 6 weeks post op now i have no pain! Tired and emotional through loss of estrogen but no pain. I know it doesn't work in everyone's case but it could be an option? I hope you find something that ease it. I have heard that removing dairy and wheat from diet works although not for me. Good luck x
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    • Posted

      Thanks for that smile i have asked about a hysterectomy but sincei've only just seen my 21st birthday, i can't find anyone willing to do the surgery. In the mean though, just gotta keep on keeping on smile
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    • Posted

      I'm not sure anyone would as it so early but I know people on here in early 30s but that's still 10 years away for you. Have you tried the wheat and dairy free to see if gives you some relief until you are older. Keep asking drs for help. You're still very young. I had children at 24 and 27 so my twenties were relatively symptom free as pregnancy helps but it was still another 10 years before I wanted to have operation. Also have you had thyroid checked as often goes with endo and that won't help either
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    • Posted

      Yeah, I know i am young it just frustrates me that because i am young they dont want to do another surgery which i was hoping wuld bring me relief but also wont do a hysterectomy. No i havent had my thyroid checked but will look into it, Thank you!
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  • Posted

    Hi Jayme

    What a brilliant piece you have written there.  It says exactly how I felt when I had my endometriosis...but didn't know that that was what it was for about 3 years (my mail doctor said that I had irritable bowel).  I felt terrible every month and it felt like a hand was clasped around my bowel.  I had to go home from work several times, as the only relief came when lying down.  It was only when, finally, a woman GP referred me to a specialist that an internal investigation showed the endometriosis (which I had never heard of).  I chose a full hysterectomy (as I was then 42 and had never wanted children) and never looked back.

    It's a horrible and embarrassing condition...and like all things that you can't see is difficult to explain to anyone else, especially men.

    I hope that you get the treatment and relief that you need.

    Patsy

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