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Endometriosis UK
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Pain and working

Hi all!

So for the past 2 years I've been dealing with the horrendous journey of trying to get help with my pain management. Im not officially diagnosed with endo, however after a year of ruling out other possibilties my gp believes thats what i have, and now a gyno consultant at the hospital has just referred me for ultrasounds and if that doesn't show anything a lapraoscapy as that's what she's also looking for. I also have PCOS.

What I'm struggling most with atm is pain management, especially at work. I work in an incredibly busy retail environment and I'm not allowed to sit down at all during my shifts, yet 2-3 weeks of the month I struggle with excruciating pain and fatigue. Metafetic acid doesn't massively help, and I've been put on codeine but i dont like using it all the time plus I can't use that while I'm on shift as it makes me feel tired and dizzy and I can't work properly.

My main issue at work is that my manager isn't very understand to my perspective, he recently joined our team this year and changed our breaks, if we're on longer shifts (8hours) we can only have a half an hour breaks, when it used to be an hour. I've tried to explain to him that as my pain meds (showed him prescriptions etc) need to be taken with meals, half an hour doesn't give me long enough to allow the meds to take effect before I go back on my shift, plus it doesn't give me long enough to rest and get my energy levels back up. I'm really struggling with this as I struggle to hide my pain when I'm with customers, and then I get in trouble as I'm not offering our policy of 5* customer service. But as I'm not officially diagnosed yet he says he can't make exceptions for me, and refuses to put me on shorter shifts. I love my job but dealing with this pain is really getting me down. And I'm not sure what to do.

If anyone can offer me pain management ideas, or ways of talking to my employer I'll be much appreciated.

Thank you.

22 Replies
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Hi

I know it’s hard! I’m in your situation now..

You not alone!!

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Hi,

It's definately comforting knowing it's not just me.

Thank you

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I had sleepless night

My pain 24/7

And i have PCOS too!!

I’m not me anymore, feeling in pain, feeling fainting, nausea, tired...

I wear fake smile at work...

I didn’t officially diagnosed with endo or PID or else..

Waiting for my laps date :(

I hate it!

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Hi

I'm sorry to hear what your boss has been saying. I also have pcos and disagnoised endo. I have previously worked in retail and in the end moved to another store as I felt my boss did not understand. What I found helpful was to book in time with my last employer so I would have the time to explain the conditions.

Have you joined a union? They really helped me in my first store.

As for pain management I wish I could say it gets easier. I'm currently on a lot of a pain relief and struggle with sleep. It can be a very challenging condition but you need to enjoy what I call my pain free days. I find that having a few days off where I enjoy doing anything relaxing helps. Plenty of baths and hot water bottles. I also used heat patches when I worked in a store. I have also tried a tens machine which did help form a long time but I lost it in a recent move.

I hope all of this helps. You are certainly not alone and speaking about it definetly helps. Try and speak to family and friends as they may be able to give you tips on how to explain such a complex condition.

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Hello,

We don't have a union unfortunately, and due to where I live I can't transfer stores. But the company does use health assured and people's support (external companies) so I might look into that more to see if they can help me.

I've heard tens machines are good, might also look into that. Thank you.

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Tens machines are very practical they are small and often can't be seen by others. It's definitely worth a try. Are you on any medication at all?

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Yeah codeine and mefenamic acid, but I don't like being on codeine at work and the mefenamic acid doesn't help much just takes off the edge. Gunna look more into a tens machine.

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I'm currently on codeine and don't take it at work. You may want to ask your doctor to look at naproxen as this helps but isn't as bad a codeine is

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You need to start nourishing your body more. Vitamin B6 for fatigue, zinc and selenium to strengthen the immune system, anti-oxidants such as pycnogenol and astaxanthin and vitamin D (if you lack it) to reduce pain.

Sleep a lot at night (at least 9-10 hours) and during the weekends or your days-off. Meditate and spend time in the fresh air. Reduce stress outside of work as much as possible. Consider a complementary route along with pain-management (such as progesterone-only pill).

Wish you the best of luck in all your endeavours!

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That sounds a really tough environment to work in! I understand about pain meds not working as that was the position I was in prior to my surgery last month. I have brought a TENS machine and found it useful. Am considering taking it to work when I return next month. After I used them in hospital earlier in the year I asked my GP to prescribe me some volterol suppositories. They are very strong and last for 18hrs so would see you through a shift. I'm not sure on the effects of using a per rectum pain killer daily. You'd need to talk to your GP but it could be an option. Its the same drug family as mefenamic acid so they must not be taken together. You should also take a PPI tablet for stomach protection (like omeprazole) even though you are not swallowing the pain relief, but again your GP can advise on that. Might be worth having a chat with them to explain the issues.

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Hello,

Thank you for your advice, are tens machines big/small/bulky/light? Are they okay to use while standing up and walking etc?

Do you need PPI for mefenamic acid too? I've not been prescribed anything for that.

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My GP did give me one for mefenamic acid. They are rough on your insides hence the need to eat with them. Long term use can lead to reflux and stomach issues. A Tens machine should be small and light but you do have wires coming out. I stick the pads on my lower back. You might be able to disguise it under a jacket or use it on your break. Mine does runs of 20mins at a time. A lot are battery powered but I found a rechargeable one in Argos for just under £30.

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That's handy to know thank you!

Gp has just given me more pain meds, I've been on them for over a year now and has never mentioned about PPI or said that I need to be careful, I'll mention it next time I'm in. Thank you for the heads up!

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What an awful situation I have a diagnosis but I found prior to that I was clock watching with the mefanamic acid. I am now taking neproxam (alongside lansaprazole) and nefopam and paracetemol. I take coedine for breakthrough pain. Are you in a union ? Is there any occy health team ? I would phone Endo UK helpline and see your GP. Even without a diagnosis this can't be acceptable.

I still struggle at work if you need to get signed off until you get better pain control I would consider it. I am considering getting signed off as I may trigger due to sickness. Endo is little known and chronic pain is not well managed in the workplace.

You sound a great employee and they are lucky to have you and should be trying to retain you. I know the massive impact that chronic pain can have on your life.

My GPs have been great and I have gone back repaetedly. Keep a pain diary it really helps. Good luck and I really hope that you get some support and answers not knowing the full cause of the pain can be really distressing in itself. Take care xx

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Hello,

Thank you for the support! It is really difficult. I'm worried about being signed off as I've just taken 7 weeks off for bereavement reasons, and they werent very helpful when i came back (im meant to do 12 hours a week yet said i had to do 25 hours over 3 days as ts christmas, i came back on the 21st of dec).and i struggled with the drop in money. I'm also a student so even if I take time off work I always still have university work/placement to do.

At work we're not allowed a clock on the shop floor anymore so we don't clock watch, and due to ezcema I can't use a watch 🙈 this is why I struggle with mefenamic acid as 1) work aren't great with break schedules and 2) it's difficult with timings.

I'm seeing my gp today mainly to ask about the support I can get while I'm the grey area while waiting for tests.

Thank you so much!

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Sounds a good plan, you have had it really rough recently with pain and a bereavement. After diagnosis I got a letter from my endo speiclaist as I did a post grad masters module and uni took it into account.

Good luck with the Gp x

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I know it's difficult, I feel like it all goes hand in hand, stress makes pain worse/pain makes stress worse so I'm not too surprised that it's been worse these past few months.

Thank you! X

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Been there and it's horrendous. Worked for the most known chain of book shops in the U.K. For 11 years and it's disgraceful how retail companies treat staff with long term health conditions. First off have you got a decent gp? I know you're awaiting diagnosis but it's your symptoms regardless that can be classed as disability. Print out the info for employers which is on endo UK website, speak to your gp about the situation and see if they will write a letter stating you need sufficient rest breaks and a chair close to you to use when needed. Pain relief wise - naproxen may be worth a go. For me Nurofen plus sodium works better and faster than naproxen or mefanamic. For any of the NSAIDs make sure your gp gives you a PPI to protect your stomach. Diclofenac suppositories are definitely worth a go as they go closer to the source of pain. Codeine or tramadol yeah I couldn't even see the computer screen or till on them but keep them on you for bad flares. Heat! I'm just about to buy a wraparound heat pad from Argos. Have a look on their website. I need a hot water bottle attached to me at all times when it's bad and can only feel stick on heat pads when the pain is mild. The Argos wraparound would easily be hidden under a baggy jumper or cardigan. Fatigue - nothing I tried made a difference - high dose iron supplements a little if it's due to blood loss but b vitamins and magnesium did nothing. Chronic fatigue is a really overlooked symptom of endo and it's generally not as simple as boosting vitamins but do make sure you're eating a good diet - anti-inflammatory diet as much as possible and to ensure the deepest sleep when you do go to bed try Dead Sea salt baths each night - the magnesium from that works well for me relaxing every muscle in the body and promoting sleep therefore a more restorative sleep. Endo fatigue hits regardless of how much sleep you've had but getting the most restorative deep sleep the better. Nausea - if it's vomiting level request anti sickness meds from gp but when it's constant hideous nausea I nibble on ginger biscuits and sips of coke - again you need your gp to make it clear you need 5 mins whenever needed to access these things as I bet they don't allow them on the shop floor. Do give endo uk a call, they may be able to advise plus look into unions independent of your store - search online for retail unions as they cover anyone who works in retail regardless of which shop. It takes a lot of research but look into cbd. I find Love CBD balm massaged in 3 times a day helps contractions and Facebook group Simply CBD Users very informative (cbd drops taken daily are making things more bearable but you need to do your research regarding how to start off else you're wasting your money - search endo on that Facebook group and ask for advice). Good luck - I have been there and retail is brutal as regardless of what a great staff member you are they know they can replace you. I was treated horrifically during the bereavement of both my parents, endo and kidney surgery - you need to get as much advice as possible and decent backing from your gp xx

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Thank you very much! I'm gunna look into heat pads, and I've heard cbd oil is good for pain, I've been using products with cbd oil in for ezcema which has helped a lot, so I might look into it more for pain management too.

Just been to the doctors today and explained the situation with my manager to my gp and she was appalled so has given me a note to make sure work make requirements for my pain.

Thank you for the tips! Much appreciated xx

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Years ago, when working in retail, before I had the issues I have now, I had issues with my knee that required me to take pain meds that also required food and time to kick in. I went to my gp, at the time, in tears because my work was refusing to recognise that my requests were pain related and had nothing to do with me wanting to be awkward and he wrote a note that I could only do shifts x long without x amount of time to break and that I could not follow night shifts with morning shifts as the 8 hrs in between didn't give me adequate time to sleep, eat, and take meds without impacting my health further. My work was not happy about it but they had to work around it. I was not refusing to work, just requiring my breaks to be reorganised (not the over all time increased in one shift) and my scheduled shifts to take into consideration a medical condition. I also was not required to tell, or explain, to my work the exact nature of my medical condition - only that I had one, was under Dr care, and provide the letter/note from my Dr to back it up - because let's face it, no one should be in the position of having to justify private personal symptoms and conditions to an employer who had no trained professional idea of what you are going through, never mind one that is judgemental and unsympathetic. You have rights. You are also a person and deserved to be treated as one.

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Oh.. Also... Pain management. In addition to prescribed meds I basically live with my microwave heat bags when at home. Obviously not helpful when working in retail, but there are heat patches you can get in the medical supply section of most major grocery stores and in the pain management section at pharmacies that stick to the inside of your clothing. Not as good as a heat bag when stationary, but definitely better than nothing.

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That's amazing thank you, didn't realise they did heat patches, but I do live with heat/microwave bags on me when at home! Haha

I've just been to the doctors, my gp has been so sympathetic and has written me a note so my employer has to recognise my needs now. And has also given me a different pain med to codeine (as she doesn't want me on that long term) so hopefully that is effective.

Everyone has been so helpful and supportive on here. Thank you!

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