Discrimination at work due to endo - Endometriosis UK

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Discrimination at work due to endo

hanybobany profile image

Hi everyone, has anyone else experienced any discrimination at work because of their condition? I have found myself in the most awful situation whereby my manager has referred to my condition (stage 4 endo And adenomyosis which affects my bowel, bladder, nerves in my back and fertility issues) as a ‘health problem’ and that I am having too many appointments to see consultants, ivf specialists and counsellors etc. She has made me feel so bad that I am seriously considering leaving my job after 7 years because I was made to feel basically incapable in a recent meeting I had with her. Any advice on this would be amazing as I have made a formal complaint against her. I feel so hurt and was already feeling stressed and anxious about coping with my condition long term and embarking on IVF. I have now had to put this on hold because I am so distraught by the way I have been treated and now have frequent panic attacks and feel the most stressed I have ever felt in my life. What a nightmare!

Thanks in advance


12 Replies

Hi hannah

So sorry to hear your being treated this way. Have you had an occupational health appointment? This is a good step of not you can request it from your work, an independent Dr will come meet with you discuss your conditions/ symptoms how it effects work. What things would help you manage at work. This is then put in a report to your manager for them to l at the requested changes for them to look at how it works with the companies need etc. But endo is usually considered as being likely covered under the disability act 2010 so there is more onus on the company to try and work with you as to not discriminate.

Unfortunately I think most women with endo have experienced some discrimination. For me it was when I got a new manager and she couldn't understand why when I was in a lot of pain I was not sociable and a little snappy. I got an occupational health report done and since it has been better as have agreed a system for me to tell her when I'm having a bad pain day and for her to know how to best approach me. My company has a sickness policy that means without intervention I would hit written warnings very quickly as I regularly have a day off a month rather than a week off every now and again. So they've made changes specific to me to avoid me having meetings about sickness when it's all connected to endo, same with time off for appointments.

Thank you so much for your reply, I met with occupational health yesterday and they were amazing. I just have to agree with HR and my manager as to what the reasonable adjustments might be. It makes me feel better knowing that others have experience in this area because I just don’t know how to cope with it. Thanks again, wish me luck x

I too have the same with work and sickness, it's all so frustrating which doesn't help when stress is my main contributing factor for my endo symptoms.

I've been in the same situation as you and have found a way to deal with it proactively, it's taken some months, and lots of conversations with my manager and HR. I still have a bit of work to do and want to push another amendment through. But here's some stuff that's worked for me:

1.My manager has been through some gynae stuff herself so at first I found her rather dismissive of my illness and sickness because she manages. My step in manager (for when she's off long term) doesn't know about any conditions so I printed off this guide provided by Endometriosis UK and handed it to my step in manager and HR. Which meant they could read it and learn without having the "difficult conversation". It gives guidance on what the employer can and should be doing to help and what your rights are.

Endometriosis in the workplace leaflet: can be found at endometriosis-uk.org/public...

2. I am a member of Unite, the union for employees, and we have a rep in our company, I had a meeting with her to discuss should I have a capability hearing, or a meeting, what can I push for regarding working arrangements and time off. She suggested push for an Occupational Health meeting, then ask my specialist for a letter outlining my condition and what is expected of me.

3. Occupational Health phonecall is medical person whom took notes on my condition, treatment, symptoms and outlines what I should be able to cope with - this is a recommendation not "the law" so work doesn't need to agree.

4. Armed with my unite rep (whom can attend a capability hearing), my work rights, my letter from my GP, my list of symptoms beside my sick days and an idea of my workload I was able to suggest flexible working when I know I have a flare up (around my periods). This was to be reviewed in 6 months.

So far it's been going okay; I'd like to amend the plans and arrange another meeting because I've noticed others in my team can work from home if plans permit it. This was previously rejected by my manager however my unite rep has said if others are doing it I can too. I just need to put together a good case because currently it's just sitting down causes back / period pain which is the only non manageable symptom.

I'd suggest you do the same as the above noting the following points;

Sign up to Unite if you haven't done so, as it'll take 14 days before you can actually speak to someone face to face. They can discuss with you your rights regarding working specific to your role in your workplace.

Talk to your specialist or their secretary and explain your situation, ask them to write a letter to your work regarding your ongoing expected symptoms. It usually costs - about £20 for mine. If you have other specialists or other areas of professionals, get in touch and gather as much information / letters to support your case.

You can arrange a Capability hearing yourself, it'll be between your manager, HR and your Unite rep at any point and suggest your side of better working to benefit both you and the workplace.

It is useful to remember that the work has targets to meet with sickness levels, so you'll need to show how you can still contribute to your team, perhaps think about flexible working or working from home especially if you can plan and sort of know when you're ill.

Be prepared to share your symptoms and be open about your cycles - you'll need that if your symptoms are cyclical.

Remember do not offer holiday time for your flareups - legally if you're ill you shouldn't be on holiday so they cannot suggest that. Don't take unpaid leave either.

Try to suggest perhaps offering that managers and HR can review your agreement whatever it is in a few months time.

You ideally want to be on okay terms with your manager, or if not them then perhaps if HR is more favourable you can talk about your sickness / days off to them as ultimately they see and mark absence.

And above all try to stick to facts, it's difficult because we all get emotional, but you really need to sell the point of you're still a person, you do actually like your job, despite all that's being going on you'd still like to be there and would appreciate their support.

If you've done some of the above already I apologise for repeating. I've been through this three times now, so am prepared! The first is always scary and a feeling of "why me", "as if I don't already have enough problems", "now I have to come to work and I don't like my manager".

Let me know if any of it has been useful!!

hanybobany profile image
hanybobany in reply to luthien

This advice is amazing thank you so much for your time and response. Some of the steps I have already taken but because this is the first time I have had to face anything like this I am finding it extremely daunting and difficult. I am so angry and emotional with my manager and the workplace in general for how things are dealt with. I am a member of a union called UCU which is for colleges and universities so I have got in contact with them to arrange a meeting but work are pushing to meet with me before that happens. It just feels like I have to fight for everything at the moment and I don’t think I have enough left in me to fight this. My manager has made me feel I have nothing left to give to my job so how can I even begin to defend myself? I don’t feel strong enough. Maybe she is right and I can’t do things well enough anymore. I have asked the GP for a letter explaining how my condition affects me and have a catalogue of other letters from the consultant etc. Which I will take along to any subsequent meetings from now on. I will definitely print off some info for my manager, whether she will read it or not is another matter. I just can’t believe that the only structure in my life at the moment is now gone because of one person that I work with. Things feel like they are spiralling for me as I am sure you have felt in the past. Anyway, seriously thank you so much for your reply. Good luck with your manager x

luthien profile image
luthien in reply to hanybobany

Ahh I know how you feel, it's all rubbish sometimes.

Have you said to work you need to talk to your UCU first? If they recognise the UCU as an official union then they have to let you discuss your plans and rights with someone non-biased, to support you first.

Has work said what kind of meeting it is you are attending? You need to know if it's formal, as in written record with a formal warning, or just an informal chat, or will decisions be made depending on what's said.

It's sooo difficult but try to remember you are fighting to be identified as yourself and all that you have given in your work, you shouldn't just be pushed aside, and your illness needs to be recognised it's part of you as a person. I get that you feel there's nothing left there because you feel so pushed away, but just think you're paving the way for your work to recognise these things, so don't give in otherwise they win and that's how they'll treat another women like you in the future. You need to show them what they can do to support you, build bridges, they've probably never been in a situation before where they've been challenged, so be that one that does something different. It may be that pushing people out until they leave is what they do because they simply don't know how to cope or how to treat people differently, so be the difference!

Good, yes be prepared :)

It may get better, but work at it for a bit, sometimes these things take months; even if you just have to go to the meeting; take your letters and info along, present it, then see what they say but don't agree to anything until you've talked to your UCU - your work should recognise that (or suggest an alternative), be honest and say that though. If they are really concerned about your illness ask them what targets are they worried you're missing by being ill? What would they suggest you do to manage better? They cannot suggest take holiday or recommend medication. Ask them to check your sick records and make sure they're properly documented as endometriosis etc, make sure HR have that documented - My workplace have added it as "Medical considerations" but only after my letter from my consultant say it's ongoing and it had to be done by HR.

Sorry it's another long post.

If you feel that the situation cannot be rectified, perhaps start planning for a different job / different employer - sometimes a complete change can help start fresh relationships because there's no bad "feel" about it all.

hanybobany profile image
hanybobany in reply to luthien

Again, thank you for your reply. You have just helped me to make the decision to stay strong and not back down. Your totally right in respect to the fact that they push people out and that they haven’t dealt with a staff member with this condition before so I will fight for what’s right and to pave the way for others too. They haven’t said what type of meeting it will be, just that they would like to discuss reasonable adjustments with me. However they have just informed me that my union rep is on holiday until 15th August so I have told them I need to wait until she is back to have a meeting with them. They asked me if I was sure I wanted to wait until then and I’ve said I will think about it and let them know tomorrow. Do you think I should wait for the rep to return from holiday and accompany me or just have a meeting with HR without the rep in the meantime? Sorry for more questions, I am just so torn x

luthien profile image
luthien in reply to hanybobany

Yay, that's brilliant :) we need to stand up!

If you can wait until your rep is back that would be good, it's best to have someone with you for these sorts of things so you don't feel cast aside or ignored. I didn't for my first meeting and didn't know what to do or say, or even what I could ask for reasonably so I ended up feeling so upset and that all of work was against me. I didn't realise I could talk to and have a rep present which is why I'm encouraging you! Plus with a rep present they have to stick to the rules, and cannot pressure you.

Usually the wording "reasonable adjustments" is that they would like to give you a first verbal warning (it sounds horrible) that you're exceeding the company limits for time off etc and they want to give you a chance to say what you feel they could do to help you. The fact that work are seemingly okay with waiting for your rep suggests it's not just a chat - I didn't know my first meeting was called a "capability hearing" until I was in there, which was daunting.

Reschedule your work meeting until say a week after your rep is back, book in your rep meeting for something like the day after he / she is back. You can then invite your rep to your work meeting and email whomever is organising the meeting that your rep will be present. This should give you time to gather any additional evidence and think about answers to questions they could ask - your rep may go through these.

Oh and gather your HR records, you can ask for these; I found my flareup days were not recognised as endometriosis days so it wasn't logged correctly which made it look like I was just generally weak.

Don't worry about questions, I get it, I so wish someone could help me through this situation so I'm happy to help and share :) xx

Yes!!! My boss is a man and he has made me feel so guilty for being off sick, signed off for my lap - and unsympathetic about it all.

When I have been off sick, he’s still sent me messages about work, in-fact on one sick day, I had to work from home!!!

When you’re suffering anyway, the last thing you need is someone making you feel Bad for feeling bad!!!!

hanybobany profile image
hanybobany in reply to Ginge32

Totally agree! If your off sick you definitely shouldn’t be expected to work! There are some inconsiderate people in the world who are ignorant to others problems and when it happens to be someone you work with or for it becomes so difficult to manage. I have told work that I don’t even want sympathy I would just like a bit of empathy and respect. I don’t think it’s a lot to ask for in this day and age, especially after 7 years of service working for them. Life is too short to let someone who doesn’t know you make you feel even worse than you already do. Having this condition has put so much strain on my personal relationships and now I am being forced to make difficult decisions about my career too. Seriously, we deserve medals for still even being in work x

Ginge32 profile image
Ginge32 in reply to hanybobany

I have had very few days off compared to what I’ve read about on here, I’ve been stuck at my desk with a hot water bottle trying to crack on - always with some idiot “oh does your belly hurt”.

It doesn’t help that unless someone is going through this they have no idea how much pain and turmoil you’re actually in. Infact the best comparison I heard was someone suggesting a “belly ache” and endo are the same is like suggesting a paper cut and a shark ripping your arm off are the same!!! Aside from the pain, much like yourself this has really affected my personal relationships and having worked my arse off for years will now certainly be passed over for promotion.

I have had to fight for years to be heard by a doctor so I guess I’ll just have to keep fighting now to raise awareness - we’re not weak, we are warriors!!!

Good luck xx

Hi I really feel for you as I was in your situation due to several health issues, being off sick and having the least unsupportive managers you could ever imagine (which were women)! You are hound to be covered by the disability act. Please don’t leave your job, don’t make it easy for then. If you are having a rough time get signed off by your GP if you haven’t already, tell them the situation you are in and they are supportive. I would go and see an employment lawyer. You have 7 years of employment so you have rights. Don’t be forced out of a job. They have to make reasonable adjustments for you to allow you to continue to work such as reduced working hours, working from home etc ..... your manager should never make you feel bad because you have hospital appointments, it’s your health, not hers!!!

You will find lots of support on here and please feel free to PM me as I know exactly how you are feeling. I also have adenomyosis, bowel condition, fibromyalgia and issues with my blood xx

Hello Hannah,

This is appalling and not what you needed on top of everything else! If you are not a member of a union, I suggest you look at joining one as they will hold your company to the standards that the law implies.

However, the law needs to change to reflect conditions like endometriosis. (I left employment in schools to do supply because I knew that they would eventually try to bully me out).

Hope you find some help and can start to heal ready for IVF

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