I find I have sense of feeling guilty, anxiousness, useless and fustrated when I'm battling with the chronic pain which stops me from living a normal life. I'm battling with myself as well this disease because I'm such an active and strong person which like to be in control but I have no control over this disease and how it's destroying me from the inside out.
I think most of you out there living with endo will feel or have felt the same and this is side the medical profession don't always acknowledge so I would like to help in order for others to help me. Please get in touch for a friendly chat. I would also like know about or start a support group in the Derby area so please get in touch.
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julieoc71
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Im currently feeling just like you at the moment - totally letting this disease get the better of me and its a horrible feeling!!
I had a lap in June where they found small amounts of Endo on my Uterosacral ligaments, and although I'm glad i have a reason for my symptoms, i hate feeling like because they only found 'small' amounts, that i must be making up all the pain and fatigue!
Thank you Emma. You are not making up anything Hun it's very real and the medical profession just does not understand. I ring my doctors today about how intense my pain is and how it's affecting my balance. He just said ' I'll extend your sick note but your pain is so complex there's nothing else I can do' Sending you a big hug. X
Uterosacral ligament endo is some of the most painful as those ligaments do a hell of a lot! I had similar. A lot of my endo was in my bladder which wasnt painful even tho it was stage 4. I had stage 1 on my USL was absolute AGONY. Weird isnt it.
Don't ever think you are making it up. Im exhausted, barely able to work, barely able to walk, and in agony 24/7 and unfortunately people just don't understand how debilitating it is.
From what I've researched, endo can often instigates mood swings because of the hormonal imbalances it causes. Dealing with chronic pain can be mentally exhausting too.
I've tried my best to explain this to people I know since a deeper explanation usually helps people be more respectful to what's going on. People are more patient for the most part, but sometimes people accidentally feed it. It's possible that they don't always remember that someone is trying their hardest to stay in control of themselves and that there are days when their best isn't good enough.
I've had a bit of relationship issues from it, but I'm doing my best to try explaining this stuff to people and to be patient with them not being able to relate at the same time. For some people I know, the worst and longest lasting pain they've ever felt was something like a bee sting. For others, they may have arthritis or some other chronic pain and they're usually the ones that are more patient about it.
Unfortunately, I build an immediate tolerance to painkillers, so I'm stuck dealing with it on my own, which often makes it more difficult, but hopefully seeing a therapist should at least help. There's only so much I can do, but at least I have some control instead of none.
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