Feeling lost: Hi all, I am on the waiting... - Endometriosis UK

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Feeling lost

Hannah2705 profile image
3 Replies

Hi all,

I am on the waiting list for surgery to have endometriosis removed and possible cyst removed as well. However in the last few weeks the pain has been reaching whole new levels, and I feel at a loss.

I have been given painkillers but only helping a small amount, I am barley sleeping, feel super hormones and struggling in general. I have had to take the day off work again which I hate doing as I can not really move from the fetal position for some comfort.

I am feeling really low which is NOT like me and just don't know what to do or where to turn.

Any advice from anyone? Xx

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Hannah2705
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Paiis profile image
Paiis

Hi,

I know how your feeling, doctors don't seem to be overly bothered as they don't have to deal with it everyday. Employers don't seem to understand the full extent of the condition, but having to take time off work will effect your mood and stress levels because you will worry about them dismissing you and the lack of income each month. i know first hand this can be difficult along side the pain everyday.

I find a hot awe bottle helps me, if your job involves you to be sat down you can always take one to work with you if they help. I like to take a long bath i find the heat helps my pain and also relaxes me so i'm not stressing to much. I find having having someone to speak to just about normally things helped me so i wouldn't become very low and depressed.

My pain kept getting worse until they operated and removed it, the pain is hard to deal with when it just keeps on getting worse and its not like a broken leg or arm where it can be seen and will get better over time. resting when you feel you need too and gentle exercise can help but only when you feel your pain isn't at its worst and won't make it even worse after.

I hope this has helped you even if its only a bit. Fingers crossed your operation wait won't be too much longer.

aimee1990 profile image
aimee1990

i just posted and seen this, i feel exactly the same. im at my wits end with it all, i feel as if nobody listens to how much pain you are in, i panic that i may have ovarian cancer rather than endo as all my symptoms dont match endo. im on the waiting list for a lap too xx

Hi All,

It's good to know we're not alone. I had to take today off pain woke me at 4am really fed up with it. Am still having tests ultrasound & MRI I am guessing I'll be getting on a waiting list for same. Although surgery not good but it's the only thing to sort the pain. i am a bit nervous they might suggest watch & wait, but at my age & with the symptoms I have I will be surprised. Have you rung the hospital to try and request a cancellation slot ? No harm in asking.

I am sorry you have to wait and suffer.

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