Endometriosis UK

65,414 members • 50,085 posts

How many of you work?

Do you work, how do you cope, do you get any special measures for your condition?

I have been off since June 2022, self employed so now getting UC. Perimenopause, bereavement and job loss, loss of income and now applying for Mortgage Interest Assistance on top of possible return of endo making this a very stressful situation. My husband doesn't work at the moment due to Functional Neurological Disorder. It's a mess but we have family assistance 🙏

I've been looking at the jobs market and wondered if I'm being a bit too optimistic. The anti depressants are working nicely on my mental health but the nausea, pain, lack of appetite and now I'm starting to feel deconditioned physically. Just going up the stairs had me feeling like an 80 year old yesterday.

I have dispensation until September so I'm not being pressured but somedays I feel ok then others not so good.

I understand that some of us have to solider on regardless due to many factors. Do you have any advice?

Written by

Chooklady

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23 Replies

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Endolemon1 month ago

hello 🌷

I have severe Endo and waiting for an operation now. I am working part time and on UC. I am suffering with fatigue and brain fog, some days it is very hard to work due to horrible bowel pain. But I must work cos I am renting. I got divorced 3 years ago, think my illness was one of the reasons.

I have reduced my contracted hours at work and applied for PIP. My hope is only for surgery 😬

Chooklady in reply to Endolemon1 month ago

I am sorry to hear this, I do hope that things get better for you.

AMJ881 month ago

There are many Endo friendly employers out there who do offer flexibility when working. I work full time, if I am in alot of pain then I am able to work from etc. Xx

oceandaisies1 month ago

I work full-time but after I was offered the job I explained a little of my situation (I didn't have to go into detail, just that I struggled with pain) and luckily they were very understanding and agreed to me working 3 mornings per week in the office and the rest from home. I think it's best to maybe overestimate the time you would need to work from home etc as then you can always build this up if you find you are coping with it, rather than set their expectations too high and not be able to manage. If you find a good employer they should be willing to work with you on this, and knowing they will be understanding if you need to work from home more than agreed or have some time off is a big anxiety reliever. I would just make sure not to sign any contracts until you are certain they will be supportive of you and willing to make adjustments for you when needed. Wishing you the best of luck xx

Escapologygirl1 month ago

I'm in Ireland and declared unfit for work since Feb 2022 and I'm not improving either, I'm getting more pain and insomnia. I'm 45 so probably menopause. My headspace is so horrible that it scares me. Last job I had was a deskjob and I explained I had endometriosis and they weren't impressed. So not come across any friendly employers here. I'm on welfare payments and thankfully my husband is working but this cost of living crisis is really bad, can't afford to pay for the Dr's visit or gynaecologist visit. In Ireland we have to pay for these. A gp is €50 each time and the gynaecologist is €120 or €150 each time.

Chooklady in reply to Escapologygirl1 month ago

I didn't know that you had to pay, it's only time until we do too I reckon. Sorry that you didn't get any recognition at work, I really thought that the laws were in place to make adjustments.

Escapologygirl in reply to Chooklady1 month ago

Oh they probably do everywhere else but Ireland and I keep telling myself it'll get better someday

AllthatGlitters1 month ago

hello I have now worked for 2 big companies who refused to make adjustments for me to enable me to stay in work. I was sent to occupational health and although the person you see is a Nurse or a Doctor, and they recommend adjustments, it falls on the company you work with to agree to these adjustments. For me I am covered by the Equalities Act due to how my health problems affect every day life. Some employers are absolute horrors. I haven’t been lucky enough to find a supportive one. The worse thing for me is that all my managers & HR who reviewed my medical history were female and not one of them was supportive. It really makes me sad x

Escapologygirl in reply to AllthatGlitters1 month ago

Right!?!? Female bosses are just beyond horrendous towards other women especially when we have endometriosis

AllthatGlitters in reply to Escapologygirl1 month ago

yes they certainly are, the ones I have comes across anyway, so much for girl power and all that. It’s like they think you are lying, although you provide evidence of your conditions. I have endo and adeno and fibromyalgia. I wish I was lying! x

Escapologygirl in reply to AllthatGlitters1 month ago

Exactly 💯 Like seriously if they walked a mile in our shoes they'd see noone would willingly want to go through what we do on a daily basis

AllthatGlitters in reply to Escapologygirl1 month ago

I know you are so right. How are you today? I am in quite a lot of pain 🤢

Escapologygirl in reply to AllthatGlitters1 month ago

I'm exactly the same as you tbh. I have daily sciatic nerve pain in back ,hip and leg and lately my headspace is so scary and dark, I was an emotional weepy mess last couple of days and thankfully I think I've run out of tears today, if I'm not crying then I'm awake until early dawn and getting 4 or 5hrs sleep, hope you're faring better

AllthatGlitters in reply to Escapologygirl1 month ago

I sleep for 12-13 hours a night and still knackered. Every day is different isn’t it and you never know how you are going to be x

Escapologygirl in reply to AllthatGlitters1 month ago

I was exactly like that but lately I'm not getting much sleep even though I'm taking melatonin to help me sleep, definitely need to see my GP again, he's great and is the only medical professional on my side

AllthatGlitters in reply to Escapologygirl1 month ago

that’s good you have a supportive GP, my doctor is lovely to me. It makes a difference having someone who can help you. Have you had any operations? I have had 1 lap and 2 endometrial ablations x

Escapologygirl in reply to AllthatGlitters1 month ago

It really does and this forum is a godsend. Nope just the one laparscopy that diagnosed me with endometriosis that had spread to bladder and rectum in 2018, my fallopian tubes had to be removed due to being badly scarred and the medical records from the consultant who performed my laparscopy said he refused to do any other surgery for fear of damaging other organs therefore he recommends the coil or decapeptyl injections only!

Had another gynaecologist referral and he was not even thinking about surgery only the mini pill or coil. When I refused for the umpteenth time he said he'd prescribe pain management meds only.

AllthatGlitters in reply to Escapologygirl1 month ago

I was on decepeptyl for 7 months and also HRT for menopausal symptoms, stopped the decepeptyl but still on HRT. Hot flushes were a nightmare and also night sweats before I got some HRT. So many symptoms - how do we stay standing every day. X

Escapologygirl in reply to AllthatGlitters1 month ago

I was on decapeptyl injections and hrt twice and both times were absolutely awful and I had every side effect going, my GP even refused to allow me on them again as he could see how much they weren't suiting me. We both now know that synthetic birth control/hormonal treatments doesn't work for me and so I'm left with pain management. Earliest I can get an MRI is early June, even with private healthcare! Somedays I just can't get up most days I make myself just get through the day. Ireland is just deplorable for female reproductive healthcare

Jade20061 month ago

I’m self employed it’s quite good I can try and plan when I know I’m not well but unfortunately having lots of time of for illness , appointments, operations means that my business suffers and I can’t work full time .

I tried to apply for pip they where not interested and basically said just because you have a healthy condition doesn’t mean anything shocking as it affects a lot of things for me which I have explained I appealed and still got no where .

It’s sad really people with back pain or other pain can get it but we suffer and don’t get any help x

Chooklady in reply to Jade20061 month ago

My husband tried to contact PIP for 1 month to ask for an extension (ADHD/Autism constraints) and waited up to 45 minutes on the phone with no answer several times in a row. He gave up eventually because he was sick of thinking about how 'broken' he was in order to claim a few hundred quid.

Escapologygirl in reply to Chooklady1 month ago

I'd love to see how our government officials/ministers would cope with this life, you can be sure they get top treatment!

Greenlady481 month ago

hi.

I work for the nhs. In ED. They are the worst employers ever.

I took 6 months sick leave after the last laparoscopy that I had to pay privately for.

I’ve currently reduced my hours

That took weeks of waiting for occi health who told me to ring the hospital constantly with who I’m awaiting a hysterectomy for adenomyosis. They haven’t got clue at all about endometriosis. I’ve given up with them and now hoping to take early retirement. I’m 52.