Endometriosis UK
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Struggling with work

Hi Guys,

Thanks for reading this.

I'm currently sat on my bed, feeling anxious yet again at having to have a day off and work not really understanding.

I've only been in my job for nearly 10 months and unfortunately it's fallen at a time where my endo is just playing havoc with everything.

To give a background: I had CIN2 on my cervix and had to have my coil removed for treatment at the end of last year. The same thing happened around March time so I decided to give it a try without the mirena because the come down after having it out was horrific and everything just started to go back to normal...my moods..my sex drive etc; it felt great.

Then unfortunately, in the last 6 months or so, my symptoms have been so awful! The exhaustion, down days, cramps, bleeding gums, dry eyes, sugar lows, hip pain, back pain to name a few, have just been unbearable. I've had to have time off and it got to a point where I realised talking to my line manager was key. I explained that I can still work at home on bad days as it's just easier than sitting in pain at my desk and sitting on my bed working isn't exactly too taxing. He was fine. 2 sick days later I was called in to an informal meeting with my HR manager and line manager...this was handled in an horrific way and it turns out my HR manager had openly discussed my illness in our open plan office and had gone to further members of staff to tell them about it, without my permission.

I chose not to make a formal complaint as I felt I'm too new to be in that position but I feel very unsupported in general.

Today I woke up exhausted, I feel very emotional (thanks hormones), anxious and I have bad cramps; I emailed work to say I'm ill but requested a generic email being circulated of me being off again, isn't sent around the office as I fully intend to stay in bed working.

My HR managed has basically emailed to say if I can't make it to the office then he's going to proceed to tell staff they can't get hold of me. I just replied saying I feel he doesn't understand my illness and despite what it appears, I still want to work but it's just more comfortable at home on bad days. I just feel so unsupported and feel very anxious about the whole thing.

Has anyone had a similar experience and do you know if there are representatives that can go in to work places to chat to managers about the reality of endo?

I see my gynae next week so I know it will only get better once a treatment plan is sorted again - but it's never a short term process.

3 Replies

Lots and lots of hugs. It sounds like you will need some support in talking through your condition with your employer when you get back. They will need reassurance that it will settle, and probably need to know it is classable as a disability too. There is a good document for employers on Lindle's Facebook page which may help. I've only been in my job since January and they immediately agreed a formal 1 day a week work from home arrangement due to my fatigue as soon as I explained my diagnosis which has helped me keep going though it's still tough, and my manager is a old school bloke. Good luck with it all. Xxxx


Endo Uk have good document to give employers in their website too.

Your company should have occupational health support so you need to get HR to refer you to them as they can asses you and will understand endo better and can come up with a plan. Maybe one or two days a week at home until treatments?

If you're in a union they can help and if not try Citizens advice as hopefully they can give you more advice.

Good luck. You're doing really well it's just other people don't get endo and don't want to learn!

1 like

Hi Katie,

So sorry you are struggling with your endo at the moment and that work are not working with you to come up with the best way to help you through this difficult time so that you can be as productive as possible.

Are people generally able to work from home if they feel it would be more convenient for their circumstances at your workplace? Are you able to contribute the same to your role/team from home? If yes is the answer to these questions then why can't you request to work from home two or three days a week on a regular basis at the moment until your symptoms are under control again. This would mean that all the staff would know where they stand in terms of days you are at home or in the office. You wouldn't need to stress about calling in to work on an ad hoc basis and stressing about their reaction.

I work for a large international company who offer agile working as an option for all employees. I had a time a few months ago when I was struggling with pain most days and I explained to my manager that I am mentally able to work but physically not feeling well enough to get myself into the office and sit at my desk for 7.5 hours a day. He understood completely and said just call in and let us know you are working from home that day and he will just let people know I am WFH that day. The team don't need to know why. They can call me and Skype chat me the same as if I am in the office. I could apply to work from home two days a week on a permanent basis if I feel it will benefit my health.

Following my lap on Monday I am off sick for 5 days from work but will WFH from next Monday for a week so will be able to contribute as soon as I can but won't need to drive in or deal with the stresses of getting ready for a day in the office etc. Your employer needs to take a leaf out of their book and understand that people will have different times in their life when they may suffer with chronic pain or difficult symptoms but they should not exclude them from the work force because of this.

I hope you manage to get an agreement in place or possibly you need to think of changing to a company who better support employees with illnesses that are debilitating to reduce the stress and anxiety that being unwell can cause. I know you have only been there a short time but in the long run your health and stress levels are more important than a job.

Good luck.


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