Endometriosis and working. Please Help me... - Endometriosis UK

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Endometriosis and working. Please Help me :(

LorienJade profile image
10 Replies

Okay, ive never wrote on a fourm before - ever, so bare with me lol.

For abit of background:

I have had a long history with Endometriosis, and was confirmed i had it when i was 16 after having problems starting at 10. When i lived in london, i didnt have the lap? i had an operation but im not entirely sure what it was i cant remember lol, anyhow, i moved up to newcastle and ive just kind of delt with it myself for the past few years. The pain is something i wouldnt wish on my worst enemy, but i have been able to work and get myself from A to B and hide things pretty well.

So ive been off for 3 weeks from my job due to my client going on holiday, ( im a carer - go figure)

And i have been in hospital multiple times, have an emergency gyne app, and i also have a lap and another ultrasound coming up in next few weeks/months (not a date yet) i have been in the worst pain EVER. i have been unable to get out of bed, let the dog out, go to the toilet without help, and just sat screaming and crying every day, im on the strongest of prescription painkillers and they do nothing.

So, i was due back to go to work on sunday, but unfortunately this is a new job for me ive only been here 2 months, and it is extremely physical, i do night shifts with the most activity between 6pm-10pm and then i have to be like the hulk at 5am-8am. Thats 14 hour shifts, and i have three sprung on me last Min starting tonight.

what can i do? i cant not work, i cant lose my job, trust me being up north the jobs are scarce and the only work ive done since i was 15 is work in care, but im in absolute chronic pain. I think im going to go in tonight, but should i tell my client how im feeling? if so im sure he will just say im unable to work there anymore, i cant afford to loose this, but i just am at an absolute loss at what to do. has anyone else had any experience with this? anyone have any suggestions? im sorry its such a long post, im just at the end of what i can handle right now. :( im in agony, but if im not careful, this disease could make me lose everything. Do you work? how do you cope? if it gets really bad do you just not work and starve, lose your house and give up on life? ..........

x

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LorienJade
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10 Replies
aprilknelson profile image
aprilknelson

I am so sorry you are going through this, I can't even imagine. I don't have much advice, except a lot of women say changing their diet cutting out gluten, dairy, sugar and caffeine had helped with the pain.

I hope you find some relief soon xxxx

LorienJade profile image
LorienJade in reply toaprilknelson

Thanks for your reply lovely. Yeah I think I need to research better diets really the one thing that has put me off in the past is the money aspect. Grapes in my local shop are 4 pound and a large choc bar is 50p lol. There should be a special endo card where we get health food cheaper :p xxx

I am in a similar situation, I am struggling with going to work everyday. I am an accountant and I work 5 days a week but only make it into work about 3 days because the pain is so bad. I was wondering if there was some kind of financial support. So many people with Endometriosis don't work due to the pain. I think a lot of people rely on their partners for financial support which isn't something that I can really do as my husband doesn't earn enough to cover all of our financial outgoings :-( It really is tough! xox

LorienJade profile image
LorienJade in reply to

I'm the same. My other half doesn't earn enough to cover us both :( I just don't understand why they're isn't more help for people like us? Like if I can't get through my shift tonight I will loose everything I've spent years trying to get :(. I'm 22 and have my own mortgage etc which we just won't be able to live in. The pain is so bad :( I'm sorry your going through this too. It royally sucks xxx

in reply toLorienJade

I know, its awful. I have just come home from work today because I couldn't bear the pain anymore. I have taken 2 tramadol and am hoping my pain will start to ease soon. I cant drive on the tramadol so on my bad days I have to stay home. Where abouts do you live? Have you thought about attending one of the support groups? There isn't one where I live :-( I'm 23, don't have a mortgage but we were going to buy a house next year but not sure whats going to happen now if this pain doesn't go away. I am due to have my 2nd laparoscopy in October, the surgeon thinks I have it on my sciatic nerve and on my bowel :-( xox

LorienJade profile image
LorienJade in reply to

That sucks, people don't understand to have it from the front and the back. Pain doesn't come close! I'm not surprised you have gone home. I take tramadol, diazepam for the muscle relaxant, transemic and me fanatic acid and norextotrine and still the blood doesn't stop coming lol. I live in Newcastle and there isn't one here either :( October isn't far away I hope it all works out for you. I have mine soon and get so scared of general as I'm overweight :/ is endo even classed as a disability? To make it to a point where you physically can't leave your house I think it should be? Xxx

in reply toLorienJade

I have tried so many different tablets they don't know what else to give me. Hardly anything helps and anything that does help I cant take as I cant drive to work with it cause it makes me so drowsy. I hope I feel better after the laparoscopy. When is your laparoscopy? I'm a bit overweight too.

I don't think endo is listed as a disability and even so I don't think you can get any financial support which is horrible as obvs work is difficult. xox

LorienJade profile image
LorienJade in reply to

Yeah it blows my mind there isn't much more support.

I'm having an emergency one so the doc said to just be ready in the next 1/2 months to go in when they can fit me in. Absolutely bricking it and even debating whether I can have it under local or maybe epidural instead? I absolutely hate general. Hate hate hate haha.

I've lasted so far on my night shift except the fatigue is killing me really struggled to stay awake and the pain is beginning to get worse with the worst part of my shift approaching.. :(

I hope work goes well for you tomorrow xxxx

in reply toLorienJade

Staying home today, just cant cope. Hope you are okay honey, its so hard having to move around when all you want to do is crawl up into a ball! Xox

sbactive profile image
sbactive

Hi, I am the same as you, terrible pain and on max dose pain relief. I take amitryptyline at night and it helps as well, perhaps you could take this in the morning instead and maybe you could work your nights?? Endo is not a disability but you may be able to get employment support allowance for the chronic pain? It's only about 70 per week, and as you start to be able to do some work you can do that as well up to 99 pounds per week I think. Worth looking it up or asking your doctor?

Hope that helps and lots of love and hugs

Steph x x

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