Work issues: Hi all, So today I nearly... - Endometriosis UK

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Work issues

Ambs2018 profile image
14 Replies

Hi all,

So today I nearly passed out at work, think this was partly due to having another flare up of pain and also due to exhaustion from the pain and not being able to sleep. I haven’t yet been diagnosed with endometriosis but I’m like 90% sure its that! Hopefully find out if its that on 22nd Jan, my main worry is I have an extremely high sickness rate due to flare ups and work are questioning my capability to work is there any advice anyone can offer? Don’t want to get fired from my job 😢

Thank you

Amber x

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Ambs2018 profile image
Ambs2018
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14 Replies
Xroisinellenx profile image
Xroisinellenx

Hi, I no how you feel, I’m in completely the same situation.

Do you take painkillers for your flare ups? I would go to the doctors and ask them if they can write you a letter explaining your waiting to find out if you have endometriosis.

Also if your work offers occupational health then ask for them to get in touch with them for you, it’s a free a service and you will talk to a nurse on the phone and you will explain your situation then they will put it in writing to your work aswel just to cover yourself more then anything.

It’s the worst thing trying to explain to people how rubbish you feel inside, like I always think I wish it was a broken bone that had a cast on then people could see it and maybe then they would be a bit more sympathetic.

Hope this helps xxx

Ambs2018 profile image
Ambs2018 in reply to Xroisinellenx

Hello, thank you for your reply! I’m currently on fentanyl patches as nothing else works for pain relief. My doctors are usually pretty good but when I’ve asked they said they can only provide me with a fit note. As I’m on stage 3 sickness absence I’ve spoken to occupational health before who said “ you just need to learn how to relax” and that my mental health is bad which I was like try living my life and you’ll understand why!! You are so right there like you said a broken bone with a cast people can see and are a bit more sympathetic where as with chronic pain you start off with sympathy and then the more times you get a flare up people just look and think “oh here we go again”. Once again thank you for your reply xxx

Mariboro profile image
Mariboro in reply to Ambs2018

I'm so sorry! I haven't been able to work for 3 years bc of this undiagnosed issue and it's terrible. It's so hard to be kind or understanding to people who can't offer the same courtesy. Is it possible to speak to another person at occupational health? I think you could lodge a formal complaint against that person as being discriminatory, or at the very least find a way to have a fairer assessment?!

I really hope you can find the right solution to this, lots of positive energy coming to you and this issue 💕

Ambs2018 profile image
Ambs2018 in reply to Mariboro

Sorry for the late reply! Oh gosh and I thought I was bad, how have you managed for so long?😱 luckily I’ve received an appointment through the post and I’m seeing someone different so I’m going to mention it to them that I wasn’t happy with what was said last time. Thank you so much for your reply and I’m sending lots of positive energy back to you, feel free to contact me in future!💕

Mariboro profile image
Mariboro in reply to Ambs2018

No need for apologize, of course everyone here understands taking time to get back to people 😑

Glad to hear that you've got a new doctor, I really really hope you have better results.

I will keep in touch. Wishing you a happy, restful Sunday 💕

Moonglo profile image
Moonglo

Hallo! Print this out and take it to occupational health/HR: endometriosis-uk.org/sites/...

Which doctors? Your GP? A bsge specialist? Do they understand your position? Don’t be fobbed off, I’m sure they can do better than a sick note. You should also be able to view your patient notes, and ask for a copy. From now on, keep a diary of your pain and symptoms and who says what, including your doctors and employers. Make sure you have a record of everything!

Ambs2018 profile image
Ambs2018 in reply to Moonglo

Thank you, I will do. I’m seeing a general gynaecologist and they don’t think it is that. My GP have given me some stronger pain relief, fentanyl patch. I’m starting to keep a log now as everything seems to be going wrong. Thanks for your reply.

Moonglo profile image
Moonglo in reply to Ambs2018

I don’t have much faith in general gynaes 😕 See if you can find a couple of bsge specialists near you: bsge.org.uk/centre/

Print them off and ask your gp to refer you to one. They might be able to help with diagnosis and treatment. You are the expert of your body, especially once you start logging things. The doctors are there to facilitate your needs xx

Moonglo profile image
Moonglo in reply to Moonglo

Oh and MandaBunny’s hit on something. Join your union NOW. I don’t think they’re allowed to accompany you to HR meetings until you’ve been a member for at least a month (I was told that 5 years ago so that info could be out of date). Someone else on here might know.

SarahMow profile image
SarahMow

I work for the NHS and got my first written warning due to being off with endometriosis. I think if you are having planned procedures and you are off after getting a diagnoses then there’s not a lot your employer can do as you potentially could be covered by the disability act (that’s according to the occupational health doctor anyways). Hope you get sorted soon and get the result you want on the 22nd x

Ambs2018 profile image
Ambs2018 in reply to SarahMow

I too work for the NHS and I thought they would be a little more understanding but clearly not. They’ve requested I see the occupational health nurse again to talk about my capability of being able to work and just feel disheartened as it feels that they don’t care. Thank you for replying and I’ll keep you updated from my appointment x

MandaBunny profile image
MandaBunny

Hi Ambs

I also work for the NHS, have had a lot of time of since last October.

It was initially thought to be kidney stones but then I linked the pain up with my cycle.

I had a laparoscopy (by a general gynea I hasten to add) in September which was 'clear'. Was so disappointed with that outcome as I need a confirmed diagnosis, not only for my peace of mind, but also for work. I feel like such a fraud now as people keep asking me what is wrong with me

I attended a Stage 2 interview and took a Union rep with me. He was awesome. He really fought my corner and it was like a had a lawyer with me!

I'm returning to my GP (for the 3rd time since my op) on the 19th and going to demand to see an endo specialist, as like you, I'm 90% certain it's that!

The problem is with most companies (including NHS), is that unless there is a confirmed diagnosis, they will continue to regard each episode of sickness as unrelated and will continue to stage you.

However with the help of my rep, my case has been adjourned until I'm seen by occupational health.

Hopefully by the 22nd, you'll have an answer. If you don't, please don't worry and make sure you take a Union rep with you, if you're with one.

It's awful how we're treated isn't it?

Good luck for the 22nd! 🙏

Xx

MandaBunny profile image
MandaBunny

Ps. I've been off sick with this since October 2017 btw!!

Ambs2018 profile image
Ambs2018

Hello MandaBunny,

I literally feel like mine and your situation is the same. Laparoscopy by general gynae which is clear but then for me I’ve had my appendix out in August and they’ve found adhesions and scarring. Work make you feel like such a fraud its awful that they can make you feel like that, at the end of the day everyones human and should be able to show a little bit of sympathy. I’m sorry that people are asking whats wrong as it puts you in a uncomfortable position. I think I’m going to contact my Union rep as in my meeting there is 3 of them and only me so would like someone to come with me. I think we both have the right to demand to see a specialist and they will know best and will know how to help. I really don’t think thats fair especially when you are off with similar or same sickness reasoning which clear shows its an ongoing issue!!! What have work said about your long term sick? Thank you so much for replying and I’m so grateful for everything that you have said, I’m sending so much support to you and I hope you get the answers you want, Amber 💕

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