How have your work been to you? - Endometriosis UK

Endometriosis UK

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How have your work been to you?

Louisevb profile image
26 Replies

Hi,

I have been struggling with this for years and I feel like it has only just occurred to me how poorly I have been treated at work. I have had constant meetings about attendance, some quite graphic conversations and I have been directly impacted financially and punished for being absent.

How have you fared?

Has anyone got any positive advice for me on this subject?

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Louisevb profile image
Louisevb
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26 Replies
AllthatGlitters profile image
AllthatGlitters

Hi no positive advice. I was treated like dirt and took my work to court for unfair dismissal and won! Up until that point I was sent to countless meetings, made to feel worse for being sick, always covered by a GP line but that didn’t seem to matter 😀you have people out there who skive off work and they get away with it. I would love it one day if these people had a taste of their own medicine.

Genuine illness is heavily discriminated against in the workplace, this needs to change.

Sorry for the rant but that’s how it feels in the workplace x

Louisevb profile image
Louisevb in reply to AllthatGlitters

Don’t be sorry! This is brilliant! I have now left my job and I’m thinking about taking them to court also. I have always had gp letters but have been constantly asked “when will this improve” etc by work. Terrible x

AllthatGlitters profile image
AllthatGlitters in reply to Louisevb

Feel free to pm me as I know exactly what you are going through. I went to hell and back. Xx

Fwright44 profile image
Fwright44

Hi my work were terrible. I had so many HR, manager absence meetings, going into extreme detail as to why my sickness was to so high.

Numerous referrals to occupational health, but then ignoring the advice, such as letting me work from home. If they let me work from home I could easily clean myself after a bad bleed, rather than running 100 yards from my desk to the lady toilets. All they kept suggesting was reducing my hours, their aim was to make we quit.

I had 3 female managers in that time all were terrible. The last one took the biscuit, considering she was the Domestic Abuse Strategy Manager for the 4th largest city in England.

Everyone knew she was going through the menopause, wasn't taking HRT, but was so intolerant to me.

When I had a potential ectopic pregnancy, when can be life threatening she expected me to attend work. I got a level 1 warning for cancelling a meeting, because they said I couldn't do that without prior consent from managers, total stitch uo. The union said they were discriminating against me, my face didn't fit. Her disdain for transferred to the whole team.

When I got pregnant by IVF, she got worst. We had a flexible working environment, but she kept me working to 5pm, even when I was having very bad back pain from pregnancy. When I went on maternity leave, she hoped I would be less baby brained when I returned.

With the help of union I got an exit payout and never returned. There was hardly a day at work when I didn't cry. If she was having a bad day I was her verbal punch bag, totally horrendous. Other people had bad stories, but mine took the biscuit........This went on for nearly 10 years.

Especially since she was always going on about how terrible domestic abuse was ........🤔

BrightLights88 profile image
BrightLights88

Hi, my work are the same. Until I got my union to come in and sit at the meetings and tried to tell my work place how severe and out of my hands my condition is. I have endometriosis and was only diagnosed September 2018, with 8 hospital admissions lasting upto 8days stay and scans every 3 months. Now after having a laparoscopy in aug they are telling me my upcoming app will be unpaid leave. So I have contacted my union again.

Louisevb profile image
Louisevb in reply to BrightLights88

It just seems never ending doesn’t it! I don’t have a union and it’s always men I have to speak to at work which feels more humiliating. I also know they openly share my information with staff and I have been told I am lucky I still have my job... it’s painful to say the least. But I have decided I’m not going to accept it! X

BrightLights88 profile image
BrightLights88 in reply to Louisevb

well mine was a male manager and I have a fantastic representative at my union who is very passionate and was very hard on my manager and told him how it is, it also helped as she had similar condition but had a hysterectomy, he literally had nothing more to say and ended the meeting here and there. But now they are trying to be difficult with my pay after 10months.

yes agree never ending battle!!

Christin_a profile image
Christin_a

Hello

I've been lucky in my current role they've been very understanding. My advice is to ask HR for a occupational health report to be done. This is where an independent Dr or nurse comes to speak to you about your symptoms and how they effect you especially when it comes to work. They wrote a report on your and can suggest things that work can do to help you. They can also confirm if they think it's considered a disability if so then there is more onus on the company to make the changes.

I've also found it useful to be quite open with those I work closely with so they don't think I'm getting preferential treatment for being able to work from home or not being called up about my absence level. I know this doesn't always work well and it does depend on the people you work with as unfortunately some women will just think "it's just a period it can't be that bad" and things like that.

I have been in other jobs before being actually diagnosed where I had warnings due to the time off I was having etc. So I've had both sides of the spectrum. It really does seem like a bit of pot luck unfortunately

BrightLights88 profile image
BrightLights88 in reply to Christin_a

my work tried to refer me to occupational therapy before I even had the surgery or even had any flare up.That was very spiteful of them as the times of the month I have a flare up it's so bad that I get admitted to hospital so they dont even see half the struggle I am in during that flare up. But now that I have had the surgery and getting extremely agonising lower back pain I will refer myself to OT.

Christin_a profile image
Christin_a in reply to BrightLights88

Occupational health are good at being an intermediary. Sometimes employers ask staff to see OH so that can understand the condition more to be able to properly support them, mine recommended it to me so there was a paper trail of why I was having so much time off. Which helped as since then I've had no issues it's just a pot out as endo and it doesn't flag as an issue but they can still track other sickness as they normally would. You can also highlight specific things if you want to for example in mine I wanted them to make clear that surgery isn't a cure and that it can take a toll on my mental health as one of my superiors couldn't wrap their head around why a bad flare up might cause me to be on edge, less patient and grouchy.

Kforkat profile image
Kforkat

I am sorry to hear this, I have been a long time sufferer for 20 years now. I have had 12 laparoscopic surgeries and a hysterectomy and it’s worse now than ever before!! I am also a HR officer for a medium sized company... sucks eh! The only person I can go to is the director!

My only advice... do what you need to do to put you and your needs first! Only you know how endo affects you. If this means your job suffers then not much can be done about it. There is alway another job.

HR get OH in to simply see if they can get rid of you under the capability act. Just keep doing what you are doing and live your life how you need to live it. Don’t let some jumped up cow make your life hell... your endo is doing that for you already.

It’s great if you have a union, they are far more helpful than most HR’s. HR is there to protect the company, don’t be fooled by their nice personality and friendly attitude. Bottom line we are employed to protect the company.

Hope things improve and if not, look for another job. Life’s too short to be miserable, especially when you are in so much discomfort.

Lots of love x

thepregnantpause profile image
thepregnantpause

My current work have been absolutely amazing (not endo related but a lot of absence this year for a chronic pain condition and fertility treatments). I think this is partly down to the fact that I work in recruitment so very close to the HR team, as well as my manager being flexible with hours and allowing us to work from home at least a couple of times a week. I think it really does depend on the job you do, if it’s something you could be doing from home or when you feel better then why should it matter? A couple of years ago I worked on reception and it would have been more difficult because they would need to pay for cover etc. Saying this, it’s not an excuse to treat you like crap whatever your job is, and some kind of plan should have been worked out that works best for everybody. If your pay has been cut that’s a massive issue and I think you have every right to take them to court, but I would advise getting an independent party to look over your contract before you waste money.

Louisevb profile image
Louisevb in reply to thepregnantpause

I asked to work from home and they said no. I could be doing my job from home. Saying that, sometimes I’m not well enough to do that. I find the pain is really distracting x

thepregnantpause profile image
thepregnantpause in reply to Louisevb

In that case I think they are being really unreasonable. You have offered them a solution and they have shunned it, which is not only incredibly immature, but also shows that they are not willing to compromise, meaning they probably are trying to push you out. Did they give you a reason for declining the request to work from home? If it's company policy and nobody is allowed then I kind of understand (still don't agree), but if there are people in your company that have this option then that is disgraceful.

Louisevb profile image
Louisevb in reply to thepregnantpause

Lots of people work from home there. It’s just because they treat me like I don’t care and I’m lazy but actually I am a top performer, even with time off I do better than most people there. It’s ultimately their loss. It’s sad because I have been there 15 years and worked so hard. It’s probably brilliant that I have discovered now that they are just a company and not friends of mine x

thepregnantpause profile image
thepregnantpause in reply to Louisevb

That’s ridiculous! Like you said, good riddance to them, sounds like it was good to get out when you did!

Lofty1589 profile image
Lofty1589

My work have been awful which comes as a surprise to a lot of people as I work for one of the mental health Trusts in the NHS. Despite any sickness this year being because a doctor has signed me off, I’ve been subjected to horrible and degrading comments, and been generally discriminated against purely because of my health issues. 4 months down the line from having a diagnostic lap, I am still waiting for a diagnosis and doing my best to come in to work. I have no choice but to work full time because I’ve been told that one more day of sickness, regardless of it being doctor ordered, will result in being dismissed. So I’ve had to cope for the past 12 weeks of going in every day and getting no support when most of the time I should be at home because I feel so awful. Occ Health suggested working from home every time but work refused. I’m the only one in my team without a laptop so I’m literally shackled to my desk.

I handed in my notice so my final day is on 22nd October and I won’t have to deal with 7am-18:30 days for a 8:30-16:30 job thanks to public transport.

It truly is awful that workplaces do not support women with these issues. It really does sicken me xx

Louisevb profile image
Louisevb in reply to Lofty1589

Well I’m in the same boat. I have resigned because I couldn’t take it anymore and I finish at the end of this month. I have decided to take out a grievance as I feel I have been forced to leave. Maybe you should do the same? It isn’t ok at all x

Lofty1589 profile image
Lofty1589 in reply to Louisevb

I might consider doing that, yeah. I’ll have a look into the policies xx

endopositive profile image
endopositive

After being let go again and again for being poorly or unable to work full time, I finally gave up 8 - 6 work. Also I tried to fight dismissals but they have so much money and the stress made me very ill.

I have watched my account become unused, my credit cards get cancelled, all the time cutting out expenses and reducing my spend to zero. I wont even get prescriptions for pain meds as it costs £9 a go.

I live off my savings and my incredible husband looks after me. It's the worst feeling in the world as I have a masters in computer science and spent 15 years studying part time to achieve this. But then I saw some light.

Life is hard and Endometriosis is my burden and I guess yours too. BUT KNOW THIS: No one has the right to treat you like crap, to tell you you are no good, and to make you feel like you are less of a human for being ill!! This is not our fault!

Surround yourself with real people who care about life, not profit! Sadly Big companies are all about profit so I have said goodbye to them. I am now doing work for small companies to help them grow, most being family run businesses or local town shops. My health has improved as a result of how amazing these small business treat me. Last week I ended up in A&E after 3 days of vomiting. My client, a young mum, came to my house to see me once I was better, she did not discuss work once.

Be strong and message me if you need anything. I care about you and I know what you are going through!

Louisevb profile image
Louisevb in reply to endopositive

I know it’s shit having no money. You can get an annual prescription for which you pay £10 per month and it covers all prescriptions! I strongly recommended this. It’s nice not having to come up with £9 on the day! I have had one for years. It’s really easy to apply for and you can use it as soon as you register! It’s called a pre-payment certificate prescription or something x

Hazeybabes profile image
Hazeybabes

I have been in the main part supported. Not sure people really understand what endo takes out of you.

I was required to see an independent occupational health advisor. Who asked me two question, could see the pain I was in and how frustrated I was and recommended that I was unable to work indefinitely pending my next operation. She would like to reassess me after my op. Just the commute alone would do me in (2 hours each way)

Endo is now covered by the equality act and has been since 2017 I believe, as it’s a life long condition with chronic pain. Which may temporarily go away but often is around forever.

I have monthly meetings to keep up to date, but talk about the same things every month really x

Just there way of getting me in the office to see people and keep up to date with any changes. And making sure I am doing everything to aid myself, eating well, sleeping, taking recommended meds. Also that I am losing the weight required for next operation x

Hope you get sorted. Ask to see HR or speak to occ health if you have access.

The only real issue I have had is recently my sick pay and SSp has ran out(been off since feb19) we have insurance at work which is supposed to kick in after pay runs out, to give 50% of wages.

The insurance company have really dragged their feet meaning I have had barely any money for 2 months ( just ESA - £73.10 per week) as long as you have paid NI over the past two years you can claim ESA once SSp runs out.

But that is less about my company and more about the insurance company x

Hi. My work have been great. But then I work in the third sector

I think it’s a tricky balance between the needs of the employee and the needs of the organisation. At the very least they should have made an occupational health referral along with making any reasonable adjustments.

Endometriosis UK have a bit on the disability discrimination act. Might be worth a look?

Sorry to hear your work have been so shitty to you.

It’s all shitty and the disparity/lack of understanding of women’s pain continues. I’m lucky to be managed by women, have female seniors about them; all of whom who understand it’s not just a “bad period”. Although I know they do get pissed off about it occasional (my performance does suffer at times)., they keep a really good balance between managing my performance and supporting me.

I am glad to hear that some people have been able to take action against employees where they have not been properly supported.

There is so much that can be done to make work more tolerable: adjustment of duties, specific equipment, working from home on really bad days (depending on role obviously)

My sister has had terrible experiences with her work (she doesn’t have endo, but an under active thyroid and varicose veins; even worse when you think her employer is our cousin): she has to stand for several hours a day behind a till. She won’t push them though because she does a fair few hours “off the books”. Still though some compassion goes a long way.

I hope you get some form of reconciliation

Solidarity xx

Louisevb profile image
Louisevb in reply to

That’s really helpful. Thank you for taking the time to reply and tell me that x

Dangermouse381 profile image
Dangermouse381

I have just been given a formal warning from work today for attendance have been to occur health and they classed my endo as a disability. If I have any further time off, I will be issued with another formal warning. I feel a bit lost and shocked by it all to be honest even though I knew it was coming. I've been there 10yrs and my sickness record has always been bad. Especially in the early years while I was waiting for a diagnosis . Unfortunately i only got that diagnosed 2 yrs ago at the age of 40. Endo has stolen my fertility, wrecked my mental health, given me so much pain in all its forms for the last 22, maybe longer years. I've had a ectopic pregnancy that wasnt picked up on so I nearly died. Since diagnosis I've had 3 lots of excision surgery and a total hysterectomy..I believe now my bowel symptoms have returned, its come back..again.

I HATE ENDO! Its wrecked my life & now its wrecking my job. Sorry for the down and out post but it feels like employers can do whatever the hell they want. If they want you out, they'll find a way 😞

Louisevb profile image
Louisevb in reply to Dangermouse381

I really feel for you. I’m sending you all the love and power I have to give you. Please do not let them win! Just do what is best for your physical and mental health, no more feeling guilty. Take yourself for a little stroll when not at work and don’t feel bad about it.

Take the warnings and carry on upwards. If they fire you then take them to the cleaners because it’s bullshit! (Pardon the swearing).

Sorry for the bossy advice but it is with love I tell you - do not lay down and let anyone make you feel like crap! Don’t be sorry, be angry!

I really hope my advice helps you. I only wish I could take this horrible condition and the upsetting experiences away for you.

Lots of love and luck to you xx

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