FECK OFF ENDO YOU MISERY INDUCING, DISABL... - Endometriosis UK

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FECK OFF ENDO YOU MISERY INDUCING, DISABLING CONDITION grrrrrrr....

LouMaffers1982 profile image
25 Replies

Hey girlies, I'm doing some research for a statement I'm putting together for a disciplinary meeting work are taking me to this week - for being off so many times etc(!) TWATS - worked hard as a Specialist NHS Midwife for 11 years but that doesn't seem to matter :(

Anyway came across this article written for the guardian in Sept this year, really made me feel that how (constantly) ROUGH I feel happens to us strong, brave women all over the world, every single goddamn day. The different descriptions really hit home. Sending you all energy loaded, pain killing hugs :) xtheguardian.com/society/ng-...

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LouMaffers1982 profile image
LouMaffers1982
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25 Replies
lisams88 profile image
lisams88

Hi

This is such a shame that this is even happening. Especially as you work in the healthcare profession.

I would print everything supporting Endo pain etc. Especially from the NHS website!

It is a disabling, debilitating condition, which should be seen as a disability!

I hope everything goes on for you.

Fingers crossed

X

LouMaffers1982 profile image
LouMaffers1982 in reply tolisams88

Thanks so much Lisa, yeah i'm gonna write a kick arse statement that will hopefully shame them. How's your endo? Maybe i should post it on here once i'm done for others to use or take comfort from?x

Amullins12 profile image
Amullins12

Im one of the lucky ones who doesn't suffer every day, just the time during and around my period. But I felt so angry reading that your work is doing this to you! Especially as it's the NHS which should be pretty clued up about what a life-affecting illness this can be. The very best of luck to you in your meeting, I hope you succeed in showing them the truth behind your absence from work. Point them in the direction of this forum and let them see how many women are dealing with endo and some of the stories that people are sharing. Let us know how you get on x

LouMaffers1982 profile image
LouMaffers1982 in reply toAmullins12

Thanks so much hun!...your kind words of support mean a lot as its a lonely business this endo isn't it :( So glad you don't suffer all the time....im sure around period time is hard enough though! I'll definitely keep you posted with how it goes, its Weds at 4pm. Ive got a regional union rep coming too after much persuading on my part. Thanks for your reply :) x

Booboo08 profile image
Booboo08

Also tell them you feel unlucky to have this and just wish for support from your employer. As they have a duty of care.

Nhs pfft can't believe it, it's hard enough explaining it to a area manager.

Jessx profile image
Jessx

I terms of your statement for work, under Equality Act 2010, you are classed as disabled 'if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.' substantial meaning more than minor or trivial and long term meaning over 12 months. I hope this helps a little and you manage to keep/get your job back! It's such a shame when endo takes over your life! I was so determined to not let it take over me but low and behold, it did! Hope you're having a pain free morning, and get something sorted soon! x x

LouMaffers1982 profile image
LouMaffers1982

Booboo - i know its a joke isn't it! :( thanks for your kind words :) really appreciate it. Hope you have a good day, whats your endo story? sending hugs.

Jess - thats brilliant thanks so much, ill quote that! Oh no is your endo bad too? :(...it really does take over doesn't it, sometimes people act like i should just 'deal with it and get on with life' - if bloody only eh!! :( Thanks so much for your reply.

Hope you both managed a decent nights kip, hugs x

Nicolahunny profile image
Nicolahunny

I agree completely with what your saying I have to go into work in pain I have had a lot of time off work due to flair ups every few months and my work have said if I have anymore time off work it will result in disaplinary hearing so I printed off a endometriosis leaflet one to give to management and one to give to the cook in the kitchen this has made no difference as she still insists on saying that I'm making it up and making me work till I'm really sore Iv went to management and said that I feel like I'm being picked on due to me having endometriosis and her not understanding how hard it is for me to perform my duties cause of the pain I'm in I hope that you get somewhere and I agree that a lot of nhs employers don't understand what us brave strong woman have to put up with battling this awful diease every day I wish u all the best and good luck to u hope you get on ok xc

LouMaffers1982 profile image
LouMaffers1982 in reply toNicolahunny

Thanks so much Nicola for your support. It sounds like you're having a hellish time too!! :( Have you thought about escalating it to your/a union? Your manager sounds like such an idiot it makes my blood boil! - i know its hard when you're in pain every day but what about putting a mini case together and going over managements' head? - they SHOULD NOT get away with treating you the way they have. I can let you see my statement once i've finished if it will help and give you some ideas? Do you have any friends or family that will help you take it further maybe..

So sorry you're having a truly shit shit SHIT time of it. Try stay strong girlie. Warm, cosy hugs to you. xx

Nicolahunny profile image
Nicolahunny in reply toLouMaffers1982

Thank you so much hunni I'm going to take it to hr hunni and see how I get on yeah I will hold my head high when I see that there not getting away with treating us like this and showing them I'm no going to lie down and take it all the best to you and don't put up with it either u will get there one way or another 😊😊

Bethleah profile image
Bethleah

Hi. Contact your union if you are in one. Definately contact ACAS for advise as they specialise in independent employment advise.Google them I'd phone their helpline number. You can tell them at the hearing you have been in contact with acas. Can you gp or specialist write a letter explaining how debilitating your condition is? Will they support you.? You maybe able to take someone with you which can help as they will remember things after which you may forget if you become too emotional angry etc.citizens advice can also help but may well suggest you contact acas. Also check you contract of employment and your employers own policies on disiplinary hearings and health problems. Good luck and let us know how you get on.

LouMaffers1982 profile image
LouMaffers1982 in reply toBethleah

Hi Bethleah, thanks for your reply hun! Yes i'm in RCM union so I'm taking a regional rep with me (after much persuasion!)...and good idea about GP letter, i know she'd definitely write me one, she could include the tramadol/morphine etc I'm on can't she...should help my case. Hearing at 4pm this Weds, will let you know how i get on. Hope you're having a low pain day :) x

slaccie98 profile image
slaccie98

Hi I also work for the NHS I'm on my 2nd formal and trying my best not to go off for the next year. I've taken my union rep in with me for every meeting. Union say I'm protected by the equality act due to endo being long term chronic condition. Also been in touch with acas. At the final stage manager has to be shown to put into place reasonable adjustments for you to carry on working. If they haven't proven this then they are in the wrong. I printed off info sheets from endo UK site regarding what it is, effects, treatments, etc. Presented these to union and manager.

I've proven that I'm doing everything possible - endo diet, surgery, meds, pain clinic, support groups (local and online), reflexology, massage, gym. It's now up to them.

Good luck and I hope this helps x

LouMaffers1982 profile image
LouMaffers1982 in reply toslaccie98

Thanks heaps! Good idea to include all the things I'm trying - homeopathy and acupuncture (which is so expensive isn't it!)..yoga, endo diet etc. Thanks hun. I feel as if they're really clamping down on absence now aren't they? - makes you feel like you're doing something wrong when actually the illness is genuine! I understand its procedure but it still sucks - its a joke. Cant wait to work for myself next year :)

Hope you're feeling ok about your meetings etc, if you're feeling terrible then don't go in - i know its easy to say -but i struggled on for AGES and used to go home in the middle of my clinic to change my clothes because my bleeding was so heavy (!) - and not once did anyone thank me. You look after YOU :) sending hugs xx

slaccie98 profile image
slaccie98 in reply toLouMaffers1982

The year leading upto my last lap I'd decided I'd had enough of struggling on in work. I wasn't getting any thanks. The policy has changed 3 times in the last year. I'm dizzy from them lol. I know the meetings are a formality and I just go in with my union rep and go thro the motions.

LouMaffers1982 profile image
LouMaffers1982

Glad to hear you're looking after yourself :) haha i know i can't keep up either. Do you work in Leeds?

Caz_2576 profile image
Caz_2576

I also have very debilitating pain and fatigue from the endometriosis and sadly unless anyone you work with has it they really don't have a clue. My boss decided a month ago to write to my doctor to see if they could push things along for me. I had to have the frank discussion of 'if they tell you I'm not fit to work what will you do then'

I've just kind of had 6 weeks pain free from a change of the pain medication I was on but sadly I feel like it's all coming back again. I have doctors again tomorrow to see if that will help. I feel like I can't keep doing this and fighting it (not suicidal I always fight it but get so tired and depressed with it) It's not even that I want a normal life, just dome quality of life would be good.

I know we're all different in our pain and how it makes us feel but you have to do what's best for you and not everyone else

(Apologies for going on a tangent, once I started typing I couldn't stop)

Caz x

LouMaffers1982 profile image
LouMaffers1982 in reply toCaz_2576

Hi Caz, so sorry you're having a hellish time :( it takes over doesn't it. it doesn't matter how positive you try and be...it always seems to catch up with you. If one more person says 'oh you just need to get pregnant' i think ill scream ha - especially as they said my chances of conceiving are incredibly low since my lap :( thats taken me months to even TRY and get my head around. I was put on this earth to be mum...or not it would seem :( Never mind the fact I'm single as constant bleeding,pain,bloating,fatigue etc etc tends not to attract many men ;) Hope the docs goes okay tomorrow and you speak to someone understanding. Let me know :) Which pain meds worked for you the past 6 months can i ask? Im on all sorts..but hate taking medications!...there will be a day when we don't need meds and our pain becomes bearable...we just have to have faith in that...not always easy! but that day WILL come :)

Sending positive vibes your way hun

xx

Caz_2576 profile image
Caz_2576 in reply toLouMaffers1982

Thanks lovely, that really means a lot. I've kind of got my head round the not having children bit but sometimes it catches you and feels like a kick in the stomach.

I'm really lucky, about 10 months ago I met someone but didn't for the life of me think I would be here with him still by my side. Tends to only put off the boys who make you feel as tho it's your fault and that your unattractive as well as not being able to give them a child that they wouldn't hang around for anyway. Their loss beaut not yours!!

Ppl thankfully don't give me the just get pregnant crap (I think the look on my face says more than enough)!! But the come on chin up its not that bad or I've had bad periods you don't know what you're on about makes me feel quite savage lol.

I was on 500mg cocodamol for ages and they seemed to stop working and my doctor said there wasn't another option unless I gave up work and I refused as that seems to keep me going. I saw another doctor who has since put me on tramadol and paracetamol which seemed to have been a God send until the past Week or so and the feeling of being kicked in the lower back is here again as is the waking up with pain in my abdomen and hips.

I was on zoladex last year with the view to having a hysterectomy but it didn't help the pain so they stopped the implants. Only problem with that Is that I've now gone thru the menopause and am on hrt to try and help.

I swear if this was on a comedy sketch people would cry with laughter bcos it all just sounds so far fetched!!

Thank you for the positive vibes lovely sending em back at ya xx

JellyKat profile image
JellyKat

Geez, I thought the NHS was on its arse and needed to keep every hard working medical professional they could (you'd get a much better deal in NZ or Australia, btw)?! Are they stupid?? Beggars belief, it really does.

Maybe go into your hearing wearing a ball and chain, pretend you can't see it & therefore it's not real. Sure, it hinders your ability to get on with normal day to day things, but if you don't believe in it then it can't be true... pretty much like the way they're treating you and your condition.

Hope you post what you've written 😉 xx

LouMaffers1982 profile image
LouMaffers1982 in reply toJellyKat

Hey JellyKat! I know its ridiculous isn't it! Ha thats not a bad idea with ball and chain, can u imagine if i just sauntered in like nothing was going on ha! - made me lol that did :) xx

LouMaffers1982 profile image
LouMaffers1982

Hey there, no i haven't tried it?...i usually advise my women to take it if they're overdue :) Has it helped with your endo pain? xx

Amullins12 profile image
Amullins12

Hi Lou, I haven't been on here for a couple of weeks so not sure if you've already posted an update, but I just wondered how the hearing went? X

KatyAyesha profile image
KatyAyesha

How did the hearing go? Hope you managed to put them to shame?! X

endo180909 profile image
endo180909

How did this go? Did you keep your job. I want to train as a nurse but I fear that my endo will stop me getting through the training and I don’t want to get through the training as best as I can, to lose my job if my endo gets increasingly worse once qualified 🤔

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