Has anyone had any problems regarding wor... - Endometriosis UK

Endometriosis UK

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Has anyone had any problems regarding work because of their illness?


I was diagnosed with endometriosis and fibroids last November, prior to that, I had 7 wks off sick with excruciating pain without knowing what was wrong with me...I've tried my best to stay in work but last Thursday I felt unwell and now I've been forced to go off sick until after any sort of surgery. My manager (a 30yr old woman) has been slagging me off because of the time off I'm having.

My next consultancy appointment isn't until 6th February, I have started with the injections but I'm still getting chronic pain in my lower back, left leg and tummy (left side). I feel so let down by my employers, there's no compassion at all, for H&S reasons I can't work, so they tell me.....I'm so confused by this disease and having to go off sick just makes things worse.

6 Replies


Sorry to hear you are struggling, work and endo is a difficult situation as employers just don't know how to deal with it.

If you feel like you are ok to work then speak to your GP and get a fit note, even if it includes some adjustments, in most cases your employer can't actually force you not to work and go sick. Do you have a date for surgery/treatment etc? If its soon then may not be such a bad thing to be off until then but if you down actually have any planned or a date then being off indefinitely may not be too good, particularly if you think you could work.

Not that I'm defending employers, but I can completely understand how employers do struggle to work out how to manage it as I can be there for a couple of days then off for a week (or much longer!) with zero warning, from a business management perspective that's not sustainable long term for a lot of jobs, yet its not like its our fault or much we can do about it! Reasonable adjustments in most job wont overly help us if we are really bad and in severe pain for days or weeks at a time.

I am due to go back to work tomorrow, I have been off work since the beginning of August and had been off a lot in the 18 mths before that as well. On a personal level i know that my boss wants to be able to support me (out of some loyalty and much more sympathetic since i passed out in pain at my desk!) so that i can eventually be back full time and reliably do my job, but realistically her hands are tied and HR procedures are in full swing, they will be helpful to start with by having phased return etc but things will get very tricky if I have any sick days and they will have full paperwork to show they tried to help me - and there's absolutely nothing I can do to guarantee I don't have any more sick days! I don't know what to do other than hope for the best, i think thats the most any of us can do. I have a good job and high salary so will be completely financially screwed if I lose my job yet I know its a real possibility and my employers have been completely fair and played things to the book so i wouldnt have any claim against them etc. Its scary but I've come round to the fact that work and suffering from endo do not really go together too well so just need to make it work for as long as possible and look into other options x

I've had so much time off with this illness. My old manager was awful and put me on a formal warning! My new manager is fantastic and I was referred to atos (occupational health) and they have classed my chronic pain under the disability act so any time I have off in the future will not go against me. Hopefully ur boss will be a bit more understanding as I know how difficult it is when your boss doesn't realise how this illness affects you x

I've been sacked coz I've got endo and the amount of time off I had. I've also found employers don't understand fortunately for me I've found a boss who's understanding to what am going through as I'm due for Lap in 3weeks and just been signed off till then even thou she now has to cover my hours herself. If you have worked for the company over a year go and see a employment solicitor and see what they say

Thank you ladies, I don't have a date for any surgery at all yet, my GP had to write to the hospital again as they'd said I needed no after care after being admitted twice, my employer isn't expecting me back for 6months!!! That's if I get a date for surgery in that time....thanks again xx

I've been off for almost a year. My pain flared up and it took 2 months for the re-referral, 6 months to get my op, 2 months for the doctors to get the right medication/dosage for my neuropathic pain relief, post op. BUT they did find it and now I'm back to work this week :)

My advice is to go with it, as getting frustrated only tends to manifest as more pain. I also found starting a hobby a good way to alleviate the frustration/depression.

Good luck! I hope your time away from work is much shorter than mine. Xx

Also, maybe make savings (if you can) to allow for any sick days you might need over and above your contract.

I appreciate this isn't viable for most of us.

My friend had to leave her job and move back in with her parents due to her inability to work. I've had some quite cruel employers in the past so I completely understand what that feels like. I'm very lucky to have the employers and line manager I have now!

Take care xx

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