Hi, I was wondering how any of you cope with having endometriosis and going to work. I've found that I have no motivation to do anything, but obviously the big problem would be dealing with the pain if you get it at work. Have any of you lost a job, or had to give a job up because of endo?
Also, I live in the UK, does anyone know if there are any benefits for people who have endo and can't keep up a job? I don't have a job, but I'm in pain almost every day, so it'd be very difficult for me. I have horses, so I keep active through them, but sometimes while I'm in the middle of the chores I have to stop and give up, because of the pain. In those situations my mum takes care of the chores I've left, but I can't imagine they'd be that easy going in the workplace.
I don't want to do nothing for the rest of my life, as I have interests in certain careers that I'd like to pursue, so if any of you have any advice, that'd be great.
Thanks
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Jess96
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This is my second lot of endo as I had surgery three years ago. When I first started suffering I had just started working in an office and everyday was a struggle. I was sick a lot and in a lot of pain and was soon off work more than I was there. Two months in to my contract they let me go and I remained unemployed until just before I had surgery. I lost all drive and felt useless. It was a really tough time for me as I had never been out of work since I was 16 and I hated not having the independence I once had.
My symptoms came back in the last few months and I think it is worse than before - certainly pain wise. I am taking some ridiculous strength painkillers (morphine, tramadol, naproxen) which make my concentration a bit low. I feel almost drunk most of the time, but not in a good way. And still need a hot water bottle to help out with the cramps. he fatigue is another struggle as no matter how much sleep I have I constantly feel tired and lack enthusiasm. I have only missed one day of work this time around and I am determined not to let it rule my life. It isn't easy and every day is a struggle but as there is no alternative when it comes to paying rent etc I have to just soldier on as best I can.
My work are ok about the many Dr's appointments I have to have but as far as sick days go they are not so lenient (you only allowed 5 days a year paid sick) so if I don't work I don't get paid or I have to make the time up which is difficult when 7 hours is hard as it is.
Unfortunately as far as I know there is no funding/benefits that would cover endo (although I believe there are efforts to make it so as many people are unable to work)
Perhaps you would be better off starting a part time job and see how you get on? Staying active is good and the fact you have horses to look after and keep you going is a definite benefit.
Are you on any medication to help with the pain? Do you have surgery planned to remove the adhesions?
Thank you for your reply. The situation with your job sounds tough, so I hope you are coping alright with it.
I'm currently in the process of moving back to my hometown, so I'm not looking for work at the moment. In college a couple of years ago, I did a graphic design course, which I enjoyed, but I didn't get to finish the full course due to moving away. So when I move back I plan on either carrying on with that course, or starting a new college course, maybe photography or something similar. Then after that is done, I would be looking for a job. Not long ago I was on job seekers allowance, but it got to the point where I wasn't really pursuing any jobs because I was in pain every day, so I couldn't see myself in the job environment. So I gave up my benefits claim.
My gynaecologist has just put me on the pill to give it a trial of 3 months. And she's prescribed me a load of painkillers. That's pretty much it at the moment, but I think I'm going to find out more about how beneficial laparoscopy can be. I just don't want endo to rule my life, because I'd love to have a career in graphic design one day.
And about there being no benefits for it, I saw a petition on here about making endo known in the workplace as a real disability. So I signed that.
I would definitely try to do something you are passionate about. I don't really enjoy my job and it just makes it harder to get out of bed in the morning! I do a lot of crafting in my free time and that helps me relax as I feel tense a lot of the time and I often have days where I feel down. Doing something that makes you happy is key to living with this rubbish condition I think.
Glad that your GP is helping you out with pain and management with the pill. Laparoscopy can certainly help although nothing is a permanent cure in most people which means it often has to happen more than once. If you want to go down the surgery route I would recommend looking in to a specialised endo clinic. There are a few up and down the country and from what I have read they can treat you much more effectively than most gynae drs and it is still on the NHS. You will. probably have to do all the research yourself as my GP had never heard of them but there is no reason why they wouldn't refer you to the clinic most convenient for you. I have my first appointment next week and I am hoping for more surgery in the new year to take the pain away for a while.
Yes I think I saw that petition, has to be worth a try to sign it. It is grossly unfair that no one seems to make allowances for people suffering with endo as it can be so debilitating. Perhaps if it was just more recognised like other illnesses that cause chronic pain we might get an easier ride.
Hi, I had to give up my 2 part time jobs at the beginning of the year, due to pain and tiredness,
I've subsequently had a hysterectomy for my adeno, but my endo still plays me up, I've got another part time job in a cafe, but I knew I needed to find another way, I'm now working from home after finding a company that I was excited by, if you would like details message me and I'll take you through it,
This company also have a range of products designed for animals, and as you are into your horses it may be of interest to you,
Hope your having a mild pain day, I'm having a medium day, but still able to do a few hours work from home, xxx
Sorry to hear you're suffering. I find working full time and commuting so difficult with all the pain and bowel symptoms - I've been off sick for the past month.
Luckily my employers are understanding but I think I'll have to go back soon to avoid being fired.
In terms of benefits, you can apply for Personal Independence Payment (PIP) which replaced disability living allowance. There's no guarantee you'll be accepted, but it's worth a try. They send you a form where you explain how your illness effects you every day and then assess you.
I think they pay roughly £50-£80 a week but have a look on their website to read everything for yourself: gov.uk/pip/overview
Aside from that, perhaps set up as self employed or start on a temporary/short term contract.
Hi, I work in housekeeping in a big hotel that is a popular holiday resort for families with children.That being said the hotel rooms are very dirty and the job is hard. Housekeeping is hard physical work, you spend whole days running, lifting heavy things, carrying heavy heaps of linen, pushing heavy carts. On my pain free days I struggle with fatigue and when I am in pain, I have to take a lot of pain killers, but I still manage. My endo used to only be painful for a couple days a month and mostly just gave me bowel symptoms, but I was "lucky" to have the worst flare ups on my days off. This summer the pain started to get worse to the point that now I have maybe one pain free week in a month, and I had to take sick leave for three days on my worst days. It was the day when I was in charge of conference rooms and had to vacuum our biggest conference room, and when you have stabbing pain in your groin, hip, back and left leg, hoovering isn't exactly what you should be doing... I cried from pain and had to sit down for a while on the carpet and just let the hoover running. I managed to get the conference rooms done but after that I just went to our office crying and told my boss I couldn't work like that. Work dr gave me three days sick leave and naproxen which gave me insane side effects so not much help really. But most of the time I can work even though I am in pain. I am lucky ibuprofen works for me (in a way that I still feel pain, but I can move around and work). If you have a painkiller that works for you partially so that you can function even if you are in pain, then you can manage work! But to be honest I think nobody should be pressured to work when they are in pain, and I wouldn't work in housekeeping if I had a choice. Pick a job that is not very physical, where you can easily sit down, and you are not strictly measured for productivity. In housekeeping we have to clean a certain amount of rooms per hour, no matter how dirty the room is. You mentioned graphic design, that sounds like a nice job that can be managed if your pain is not totally overwhelming all the time.
Hi, I'm sorry to hear that about your working day. When I was looking for jobs, I was considering going for jobs in a hotel, but realised that there's a lot of physical labour involved, so don't think I'd be able to cope, especially when it comes to being in pain, but also feeling tired and weak quite often.
But yeah, I think graphic design would suit me well. Though it can be stressful at times as clients change certain designs they want and you have to work hard to meet the deadlines. Stress can trigger the pain I get in my left side, but I think it would work well if I started off small in a graphic design company to see how I cope. But for now (or should I say when I move back to my hometown and get settled in) I see myself going back to college. I worry about sitting in a classroom and randomly being in pain. I don't often tell people my business, so I fear classmates wouldn't understand what's going on, but I'd definitely have to get a doctors note to excuse me from class if I ever felt the need to leave because of the pain.
I am in the first year of my master's and I've been randomly in pain at lectures, and my experience is that even thought it is unpleasant and you might feel also emotionally very down, my lecturers never made a big deal out of it and it was up to me if I felt like I could make it though the class or not (I fidget like crazy and switch positions all the times when I get pain projecting to my legs and back but the lecturer can notice you're in pain and not doing it to disturb). But I live and study in Finland and I think people here are generally very accepting of disabilities or chronic illness. We have a girl in my class who has Aspergers and other conditions and she speaks openly during discussion about her conditions and always tells a new lecturer that she has Aspergers so she might need some help with certain things. When someone as open is in the same class, then I don't worry much about my condition showing during class, I just do what I have to to feel more comfortable (drink a lot of water, try different sitting positions, rubbing my back). It is very emotionally draining, I sometimes felt like crying when I was in pain at class but I didn't want to leave because the class was interesting, and I kept thinking why me, why can't I be normal and just sit and listen to a lecture like everybody else in the room. But depending on how accepting the environment in your classes are, it can be perfectly ok to have a heat pad and a blanket with you in case you get pain, I used to bring a pillow to support my back, and I always carry ibuprofen in my purse. I don't tell people about having endo unless they're close so classmates probably think I'm weird, but I am not big on socializing so I don't mind, and my major is library science and most of my classmates are a little weird in graphic design you'll probably have artsy people who are too very tolerant and a bit weird themselves
Oh I think 'why me' to myself too. Last week, I was sat in the cinema watching Mockingjay part 2, and very inconveniently I got pains. I love the hunger games too, so I was annoyed that I couldn't concentrate on the film properly. I was also fidgeting and trying different sitting positions, but luckily, I sat in the corner seat, so no strangers had to sit next to me, just in case. And my boyfriend who was sat on the other side of me was being supportive, checking if I was ok, and if I needed anything. It really helps when you're in an environment that is easy going.
I'm also not big on socialising haha I have friends, but I haven't told them of my illness. The only people that know are my parents and my boyfriend. I don't need anybody else to know. But that's why it's good going on a site like this, because you can talk about it without thinking that your friend is going to judge you, or treat you differently, or tell anyone else.
And yeah, the people in my class a few years ago when I was on the graphic design course were all quite nice. So I hope I find people like that again once I go back to college
I wish you good luck and I am glad I found this site too, I can talk to my boyfriend and he supports me, but he cannot really understand since he doesn't have periods or ovaries I think if you don't want to tell everyone about your condition but still need eventually some days off classes because of pain, you might contact you student advisor or if you have some mentor or similar person whose job is to help you. You can show them a doctor's note about endo and discuss what to do when you miss class bc of pain. You might be allowed more missed classes than usual if you have chronic illness. And this person has to keep your info confidential so no one else will find out
I've recently added another post to this site, if you want to look at it. It's a radio discussion and I got my boyfriend to listen to it, and he feels like he knows how to support me more now. It was quite helpful. But yeah, it's still not the same as talking to someone who's experienced what you have.
Yeah, that sounds like a good idea. When I move back and begin college, I'll get a doctors not and make sure the tutors are aware of my situation.
I work a full time job despite the fact most (every) day I feel nauseous... The pain tends to creep in at the end of the day and I'm so fatigued by the end of the day I feel almost woozy while travelling home. It's hard.... Very hard but you just have to do it... I have rent and bills to pay that my husbands salary alone wouldn't cover.. Also we want to buy our own property in the new year, there is no way we'd get a mortgage if I was out of work. I'm quite lucky as I get 6 months full pay and 6 months half pay before I get zero salary but if I take more than 10 days off in one 12 year rolling period I go on review.... Last year I was off for 5 months due to Endo and horrendous nausea. I went back to work in October and have only had 9 days off in the last rolling year... I'm due to go off again next week as I have my lap... Probably another 3 weeks off for that..... I have alsosl signed that petition but I have a feeling there may be a way around it... I have printed off the equality act 2010 and plan to go through it with a fine tooth comb and see if there are any loopholes that we may fit into... I work in HR for a local government so it is in my interest to know anyway... If I have any luck ( I will be getting referred to my occupational health department at work before my return so I will discuss 'disability' with them also so see their opinion on it...
I will of course post back any thing I find out...
I have recently been looking at possible benefits I could get for having this illness and the possibility of it having an impact on a job, but there's not much I'd be entitled to. It all seems like really extreme cases where you need help to eat and wash and stuff like that. But yeah, I hope you get somewhere with your searches, and let me know how it goes.
Good luck for your lap next week. I hope everything goes well for you
I had to leave my last job as they were really intolerant about sickness (3 days off in a year!) and I was threatened with disciplinary action if I was off sick again. I found myself driving in, working and then lying down in the back seat of my car during my lunch break. Not fun. My new employer is so supportive, but I'm not used to it so I still push myself, probably too hard; I've passed out in work more than once, thrown up in the toilet - and just popped more painkillers and kept going. I am, however, going to the docs and trying to get things sorted, which I couldn't before as I was never allowed time off for appointments. I looked into it and endometriosis is not considered a disabling condition so help is limited. There is a petition though, so I have signed it. I can't imagine doing this for 30+ more years of my working life so hopefully a treatment will be found or understanding will increase. Working from home is a good option, as is flexible hours worked out with your employer to allow you to work extra when you are able to 'bank' time for when you need it. Good luck with your goals, endo sure doesn't make it easy, but I'm sure you'll find a way to suit you.
I'm sorry to hear that you had to leave your last job, but I guess it's better to have a job that's more suitable when it comes to the endo. It's good you've found an employer who is supportive of you.
Thank you for your advice and good luck to you too, with your doctor appointments
Under Equality Act 2010, you are classes 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 know this won't help in terms of benefits because the DWP have their own rules, however it may be better putting this forward to your new employer and they may be able to put suitable adjustments in place?
Hope you're not too bogged down by it all! I'm just finishing my law degree, and struggling majorly with getting up and motivated to do anything, but I want a job I enjoy then as someone else mentioned, it makes you more motivated to get out of bed! X
Yeah, I agree, I'd love to have a job I enjoy. It'll be tough even going back to college and possibly having days off and being behind on work, but I'm sure there's some help out there.
Best idea would probably be to go back to college - you would be entitled to special help and support from disability services - extensions on assignments, notetakers, extra time/separate room for exams (so you can take rest breaks) etc. A laptop and printer can be funded to enable you to study from home more often. It all depends on how and how often endo affects you but there's a lot they can do. At uni level you apply for dsa (disabled students allowance) to help with all this, I'm not sure what the procedure is at college so go and have a chat with their support services and find out, it's usually pretty similar.
You could apply for DLA if you need help with care/mobility - to be honest saying you can no longer go horse riding/muck them out as much as you want is not going to cut it there... It's more for if you have difficulty moving to use the bathroom/get showered/dressed, difficulty standing to cook and would need help, or if your endo makes you so depressed that you can't cope as well as before - that sort of thing. They will want to see meds you're on and have details of what's been going on with you for the last few years at a medical assessment. You can study or work whilst getting this and if you qualify it helps you get more support whilst studying both with facilitating dsa and financially in that you can get different types of student grants/loans.
You could also qualify for esa for the sick (formally incapacity) but it depends how long you've been out of work, how severe your endo is. You can still study full time or work part time whilst claiming this (though your employer has to fill out a firm).
That's all I know. Don't let it beat you, get your qualifications and live your life! X
Thank you for the information. I think the best thing for me at the moment would be to go cack to college. I'm pretty miserable with recently finding out about this endometriosis, so I think if I liked the course it would be a good way to get my spirits up again and get myself motivated in something I enjoy.
Yeah it can be a real shock, esp when you're young. A lot of young women are going through the same anxieties as you as to what will happen in future, worrying how they will cope. Get as much help as you can along the way.
A friend of mine was diagnosed was ms quite young - she opted to work part time, because she was qualified she retained a salary of 17k, 10k more than she would get working the same hours unqualified so defo if you can study to do something it gives you more options to manage work later on and still have a nice life. X
I've only been on this site for 2 days now, but it's helped a lot knowing people on here support each other and understand what everyone's going through.
I'd like to have a career in something I enjoy, so yeah, education is key.
My work place are fairly okay with me. I've had numerous days off sick, and during my operations they pay me in full, only down side is that they want me working from home. Which isn't always possible when in pain.
You mention going back to college, which I think is a good idea. I'm a graphic designer, and most of the day I am sat down, and I still get really tired and drained through out the day and come Friday all I want to do is hibernate over the weekend. Do think about future jobs, doing a photography course will presumably mean you want to be out on shoots after your course. This will mean being on your feet and being more active. Most design courses have a photography module, so you can still explore the photography area.
I think you will get more support if studying. Plus studying is usually more flexible hours wise. X
Hi I am u able to work and claim benefits at the moment, have done for 2 1/2 years due to unexplained dizziness and unsteadiness. I have to use a walking stick. At the moment the gp hasn't diagnosed me with anything that causes dizziness. I have stage 4 endo and have always said my symptoms are worse when the endo is worse.after some help from lindle I've persuaded my gp there is a possible link with endo and she referred me to bsge centre.
I have a range of symptoms I clubbing tiredness and different types of pain. I did have a part time job in administration but after a nasty dizzy spell in work where I nearly ended up on the floor, thankfully a coleague got a chair under me in time. They had to let me go as I can't work when I get dizzy and feel woozy most of the time. I get esa and hb but u it barely covers my bills. I do a lot to help myself but so far the dizziness and wooziness persists and is very debilitating. It's not practical for me to lie down in the office when I get dizzy. The wooziness is the worst as I find concentrating difficult, walking some days is a real challenge.
I gave finally got a gp who accepted the research I have done myself on endo and the lesser known symptoms. It's just me so I have little financial support except at Xmas and birthdays from my paren't. I would love to work but am just not well enough, nor is it safe duet the dizziness. The pain brings it's own challenges.
I wish I could find a job I could do that I would enjoy, or work from home at least.
I would say dovwhat makes you happy, college sounds a good option. Things will hopefully improve for you with time and the right medical and emotional support.
I'm sorry to hear that, but I'm glad you've finally found a good gp.
If you're interested in working at home, I spoke to another member on this site called Tboag and she works from home for a company. I'm sure she wouldn't mind talking to you about it if you were to message her.
But yeah, I'd say happiness is the key. Thank you, and I hope things go well for you
I'm sorry pain is interfering with your life so much. It sounds like you're saying you'd like to go back to college, so like others have said, I'd encourage you to look into doing this and into what support is available for students with disabilities.
Personally, I have not lost a job due to endo, and currently have 2 part time jobs and I've been lucky in that both employers were very supportive when I needed to take time off for surgery. I have pain at work sometimes, but with medication it's manageable and I can keep working.
I have had to leave jobs twice in my life due to psychiatric crisis. For me, my mental health problems have had a much bigger impact than my endometriosis on my ability to work. During my last crisis I was unemployed for 2 months and attending a psychiatric day program, then afterwards I got one of my jobs and worked only part-time for quite a while before obtaining my second job. I barely had enough money to survive during this time, but I think if I'd immediately tried to go back to work 40 hours a week I'd have failed.
Frankly, although I have enough to survive right now, I'd probably be in a much better financial situation if I didn't have any physical or psychiatric disabilities. It sucks that this is how the world is, and how (at least in the US where I live), disability benefits are so low that they're almost impossible to live on. (Then again, it also isn't right that so many people in the world are in poverty, period.) I shouldn't go on a rant but I guess I just want to say that I can empathize with what others are saying about how illness and disability can interfere with work and income.
Yeah, going back to college would suit me, I think.
Well I'm glad you haven't lost any jobs because of the endo. It gives me hope when I hear of employers being supportive, but unfortunately that isn't very wide spread. I've signed a petition to make endo a known thing in the workplace. I also have a post that is a radio discussion to cause awareness, along with another member on this site being active to also make endo known.
Good for you in all your efforts to raise awareness
Hi, I'm just on the brink of going self employed after being diagnosed and having a lap to remove endo this year.
Luckily 2 of my managers at my job have partners who suffer with endo - so they have been mega supportive and have let me work from home during some bad spells and reduce my hours post op. However, the bit I find hardest is my colleagues attitude. They don't know why I've had many periods of sick and they also think it is special treatment that I have allowed to work from home. I work in a male environment where I really don't feel comfortable discussing my girlie bits, bowel, bladder etc. I struggle into work feeling apologetic that I have let everyone down and have to suffer sarcastic comments. I've lied and told people that I've had migraines a more discussible illness (which is actually one of my symptoms but not the real reason I'm off) as being off with 'period pains' just seems so lame and I get the 'other women cope don't they?' attitude from everyone. I've never missed a deadline and have always got through my work despite feeling terrible, however your colleagues don't notice this, they just notice the hours you're in the office v not in the office
So, I'm hoping that working for myself I won't be letting anyone down but me. I can work extra hours on my good days and curl up on the sofa on my bad ones without having to explain myself. I'm also looking forward to no longer commuting an hour each way as I've been so tired driving home sometimes that I feel myself beginning to doze at the wheel, which is ridiculous st 5pm after sitting behind a desk all day
I agree with everyone above - do a job you enjoy, but I would pick one with a good rate of pay too - if you can only manage 20 hours make them a well paid 20 hours so you don't need to worry about the other 20 you're not doing Qualifications really do help and they've given me the freedom to go self employed.
Good luck - study hard and you'll have a bright independent future ahead.
I'm glad your managers understand, but sorry to hear about your colleagues. I feel silly when figuring out what to tell people as an excuse. Period pains doesn't quite cut it.
Well I hope that if you do end up going self employed, it will be a lot easier for you.
It's sad but true that people don't think of "period pains" as a real problem. I always use the word "endometriosis" because many people don't know anything about it but somehow it "sounds" more like a "real" illness. If people keep questioning me I start taking about my organs being fused together with scar tissue (also true), which usually sounds graphic enough to make them shut up
Hi! I know this post is rather old now but I'm new to this site and been checking out lots of posts. I had to give up my employed job due to Endo and am looking at options (not ready to start yet but possibly next year) of working for myself from home. Noticed from your post you were looking to do just that and was wondering, and hoping, that it worked out for you? Any tips on sorts of work from home jobs and ideas? Thanks in advance for any advice.
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