Work and Endo/Adeno

[fed_up_of_endo]

A little advice needed:

I left my job back in January due to symptoms being at a point hat I wasn't fit to go to work, and being a high-stress job I wonder if that exacerbated my symptoms....? On the road most of the day, sales environment, 50hrs a week, pressure to hit targets, male dominated (so a lot of ignorance - but open to learning bless them), lots of face-to-face time with clients, a heap of admin, etc etc.

HR were there to help as far as they could, and would frequently ask: "what can we do to make things easier for you in work?"

I felt comforted that they asked the question, but was absolutely stumped as to what they could have practically done to make it easier for me.

I was told to work from home when my symptoms were bad with line manager and HR approval, which was really understanding of them. The bad days mean painkillers which knock me out and don't really address the pain, not to mention the lethargy, nausea, headaches, general feeling like death etc - meant I was using sick days as wasn't fit to work at all, even from home. I also felt that the days off meant more pressure when I got back on the road from my team leader (less understanding).

Have any of you had workplace adjustments that have helped and if so what? I am potentially starting a new job soon and would like to be able to go to them with some practical and reasonable adjustments that still mean that I am able to do my job.

Really keen to hear how you have managed in work, and how work has managed your symptoms.

x

[Lornalost89]

Hi. Sorry to jump on the post as I don't have any answers I'm sorry your in this situation too. I was just about to write a post very similar, I'm exhausted with my symptoms and the wait for any help from the specialist I've been referred to. I requested flexible working at work (which has been rejected) I'm just going down the route of appeal. It's exhausted we have to battle in every way possible with this. I honestly feel people believe its not real and an "excuse"

I hope you find some answers and someone can help with suggestions xx

[fed_up_of_endo in reply to Lornalost89]

Lorna, please don't apologise! Whilst I am so sorry you are dealing with this, I am grateful to know that it's not just me (well I know that many of us struggle with this, but it's nice to hear from another person directly).

How awful that they have rejected the flexible working, maybe send them a link to the "endometriosis friendly workplaces" page.... drop a less than subtle hint! I do hope your appeal goes through and you get the flexible working. You are right though, some people do not understand and assume it's just a bit of period pain and that is so demoralising.

If you need a bit of a giggle, look up videos of men using period pain simulators (and maybe send them on to your HR dept/manager...). Not that I enjoy seeing anybody in pain, but it really does put things into perspective.

x

[Lornalost89 in reply to fed_up_of_endo]

My partner recently put my tens machine on and was dancing round the kitchen shouting before pulling it off 🤣 meanwhile we use that to help our pain! Sometimes you have to laugh don't you or we would spend our lives crying and frustrated. I see A (I say A because it seems I don't have a fixed one until I see a specialist in August unless it's postponed again) consultant on Sunday and I'm going to see if they can give me anything to support my request at work.

Trmadol etc I'm given for pain makes me so sleepy and my fatigue is out of control atm 5 days of early starts sends me spiralling. I myself feel "lazy" because im not at all used to this fatique .

[fed_up_of_endo in reply to Lornalost89]

I TOTALLY hear you about the early starts and fatigue, seeing other people being able to cope with it ok and you not - really does make you feel lazy and inadequate - fact is, you're not. As demonstrated by your lovely husband - the pain we cope with as just a normal part of our day is excruciating for people who don't deal with this. Pain is exhausting, especially when it is so severe, so constant and then with opioid painkillers thrown on top - It's a LOT to cope with before you have even started work. I wish I had an answer to offer some help, but have not found anything that genuinely helps as of yet.

Situations are not helped by a lack of care from medical teams - I get that they are stretched, but there really does need to be greater allocation of resources to endo. Sorry to hear you don't have consistent care - snap there too, it'd be a very lonely journey if it wasn't for the wonderful people here who truly understand.

x

[KittyTherapy]

Hi, I work for the NHS in a therapy assistant role. My duties involve face to face work with patients but also has a fair amount of admin. I have found the process for reasonable adjustments extremely difficult but I kept on as nobody else will advocate for me.

It certainly does help if you come with suggestions yourself (which is frustrating in itself) so I made sure I did losts of research online and was very clear what I wanted.

My reasonable adjustments agreed are for: flexible working (wfh but this is limited to one day a month basically and i was only able to get this due to the admin side of my role), flexible start and finish times, and we are currently 'in negotiations' about adjusting the absence trigger points- to allow me to have more sick days than usual (due to health) before triggering the absence points set by employer and the formal process that follows that (attendance meetings/targets etc). So far we have agreed for a very slight increase in the absence trigger but I am pushing for more. However my employer in so many words has said they require more 'evidence' in order to justify further adjustments to trigger points. Ie. I need to be absent from work more before they will do this. Which is incredibly frustrating as I have tried to be proactive about things but bc I have attended work when in ill health, HR don't see it as a big problem bc they can't see much of an absence history.

I am in a union and will access them if my absences put me in a formal process again as they can support me in meetings.

Hope this helps in some way x

[fed_up_of_endo in reply to KittyTherapy]

Hi Kitty,

That is helpful thank you! I will definitely take on board the absence trigger points going forward, that is something I would not have thought about. I hope that they make the appropriate allowances for you, or that your union will be able to assist you if they don't.

The pain aside, there is so much more to endo - like feeling like you have been hit by several busses, but still pushing yourself to go to work to make sure you stay on the right side of HR/management and still feel productive. It's a whole load of stress in itself. I admire you for attending work on the bad days, but do hope that you get the time to be able to rest when you need to too.

x

[KittyTherapy in reply to fed_up_of_endo]

It's exhausting isn't it. Like you say the pain alone is one thing but it's everything else. I just find everything such a battle especially HR. It's so stressful worrying about sick days and what to do. Fact is I've been in work plenty of times when I've been so unwell just bc I was fearful of the attendance stuff which is why I was trying to be proactive about sorting some kind of agreement to acknowledge and protect me before reaching formal attendance crap. But sadly they will only consider adjustments once there is an absence history to back it up. As if I'm a liar and have made endo up! HR is for the employer and not the employee in my experience. I think my best bet at the moment is to reach the formal process again just to ensure my union has rights to represent me then maybe we'll reach a better agreement.

I'm almost 5 weeks post surgery now and signed off work. Looking to go back next week but have asked for a phased return. Anything I can take to help, I will. I read our employee attendance policy and that has helped me to understand my rights and what is achievable alongside lots of googling and reading online x

[fed_up_of_endo in reply to KittyTherapy]

HR is definitely a company investment, a lot of places are starting to do away with it now because of the divide it creates. Can be great for some things, but when it becomes an "us and Them" mentality, it just doesn't work. As if you didn't have enough to deal with, you have to go through the stress of allowing yourself to get to a point of disciplinary/intervention meetings in work to have the correct measures put in place.... Sorry, but that is not ok. I often wish it was a made up disease, it'd make my life a lot easier 😅

How has your recovery been? Are you feeling better? x

[KittyTherapy in reply to fed_up_of_endo]

I know it's such a slog. Thankfull for some really great colleagues who help. Yeah I'm getting back on track thanks, pain is much better overall and moving about more. Have been a bit up and down, and developed an infection and am anaemic so that's not helped but doing better now.

Hope your new job is understanding and you can find some adjustments that work for you x