Newbie/ feeling alone: Hey everyone.. I'm... - Endometriosis UK

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Newbie/ feeling alone

Echo1999 profile image
5 Replies

Hey everyone.. I'm new, awaiting a lap, just wanted to share something I wrote today. Not feeling my best and I never reach out for help, just want to see if this resonates with anyone to help make me feel less alone, no one in my family understands.. thanks, love Echo x

At least when I broke my ribs the pain had an end. Ephemeral pain. The worst I've ever experienced, but I could control it, within reason. I could gaurd myself when walking upstairs or going over bumps in the car. I could find positions to sit in that gave me ease. This pain has no end. And there is no such thing as ease. I feel as though I am being worn down. By a force I cannot see or hear, only feel. And how it feels changes by the hour. One minute it is glass, sharp nails protruding into my insides, hot and burning, then a gnawing, dull, pounding ache with bouts of nausea and hot flashes. The side effects from opioid medication are too much to bare after 3 days, and by day 4 I'm reduced to over the counter meds, and scalding heater pads and hot water bottles that leave marks on my skin and leave it red raw. But the scalding burns are favourable over everything else. I am dizzy and weak, I cannot sleep for more than a few hours at a time before being reminded that my pain meds have wore off. It is a constant discomfort, I find myself dragging myself through the day just to get to the next. I try herbal teas and hot baths and essential oils and meditation. I stay hydrated even though I want to do nothing but lay in bed and cry. I eat my fruits and vegetables. I rest. And I persevere. For the day to come where I can bend down to tie my shoelaces without crying

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Echo1999
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Tienisacat profile image
Tienisacat

Hello.

I'm also new to this and waiting for my lap. I got the call this week to go into surgery but then 2 days later, it was cancelled.

😔I'm on her right now as I'm in so my pain. It's getting worse week on week and makes me feel sick sometimes. I cant afford any time off work and the doctors told me just to carry on as normal. But its honestly getting really hard to do that.

Echo1999 profile image
Echo1999 in reply toTienisacat

I'm so sorry you're suffering too. Does your work not provide sick pay? Do you have any pain relief? I'm here if you ever need to talk x

Tienisacat profile image
Tienisacat in reply toEcho1999

They do pay sick pay but who knows how long to wait for the lap. But its more to do with the tax aspect of my income. Being at home on sick pay messes up my tax. I'm already down on days from being off sick earlier this year when this all started.

Its a weird pain though and it's not that it's acutely painful as such. More that's it's uncomfortable painful. The type that just drags you down rather than ouch pain. I need to get some stronger pain killers from my doctor. Otc stuff just isn't doing anything.

M1673402 profile image
M1673402

Sending love! You are DEFINITELY NOT ALONE! It is a horrible illness and it grinds you down in every way. I certainly feel the way you do at times. My only advice is to keep advocating for yourself with doctors until you get something that helps you! My only time being pain free was when I was on the contraceptive injection, for me it completely removed all my symptoms, not an option for me now as TTC but at least I know there is something out there that might work again when I can’t bear the pin any longer! It’s so personal but I hope you find something to help manage your pain x

Angellouise profile image
Angellouise

I’m sorry you are going through this. My daughter is going through the exact same thing with the lap not showing anything so she is waiting to see a new gynaecologist who I’m hoping knows more. I wish you luck. Don’t give up keep pushing until you find the answer

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