How to work with endometriosis

When you have endometriosis (or any chronic illness) every day is like a marathon because of your limited stamina and your frequent pain. One of the hardest juggling acts becomes trying to or continuing to work.

By it’s nature work isn’t meant to be simple, but it becomes particularly difficult to manage when you’re having to contend with:

As a result many people who are frequently ill because of endometriosis are happy just to have the opportunity and ability to work. A job becomes an aspiration to those who are chronically ill – a complete privilege.

When you have a long-term illness you start to view work in a totally different way to those who are fit and well.

Working means giving yourself a certain amount of independence and freedom. An income to spend as you wish, and a schedule to work towards.

Endometriosis tries to deny us these two, very important aspects of life. By hampering our ability to work to a set schedule, and reducing the amount of healthy, happy days we are able to work. This in turn isolates us from our other working colleagues (and the wider world) by preventing us from opportunities to socialise normally.

Working isn’t the be all and end all of life though, but it’s a reality for most of us who are able enough to keep working.

How we manage

Working life has to be taken day by day. Week by week. Many of us manage by just “trying to get through the next day”. Breaking our working week down into sections and manageable portions.

While working with pain and fatigue we often find ourselves thinking:

“If I can just get out of bed right now.”

then maybe

“If I can just make it to lunch.”

It’s important to break the day down into sections you can manage. A big part of working with endometriosis is knowing the limits of what you can personally handle. This covers everything from:

It’s important not to push yourself at work too hard – you should only attempt “going the extra mile” if you feel your body is up to it. This means not just weighing up how you feel now, but the likely backlash you may get from your body in a day or twos time – when your body kicks back at you pushing yourself. Remember to plan for likely fatigue and not just pain.

Work is a reality of life. Something that many of us with endometriosis are determined to keep part of our reality. Changing or stopping work isn’t practical for all of us, neither is the option to work from home or to reduce hours. Instead here’s some practical advice for continuing to work when you absolutely have to.

Some practical examples of how to cope

Tackle the really difficult or taxing tasks on your list when you feel most able
Perhaps at the start of the day when you have the most energy.

Hold back simpler tasks
Things that require less thought or movement that can be done more easily when in pain or fatigued, without you feeling you’re failing at work.

Share your experiences with your colleagues
Talk (within reason) about how you’re feeling and what you’re finding difficult so they’re better equipped to support you

Prepare for the next day when you feel well
Make your lunch or prepare your outfit (for the next day) the night before when you might be feeling more able. Time spent when you are well allows your body to rest more when it’s not.

Plan as much as possible
Try to spread out your tasks for the day/week so you’re never attempting to do too much at once.

Stagger your holidays
Pace the leave you’re entitled to for when your body needs a break from the 9-5 schedule. Make some time for you, and what you want to do with your day.

Have some emergency supplies
Keep a stock of items you’ll find useful at work within easy reach. This might include painkillers, warm clothes, comfortable shoes and heat pads.

Try to go for a walk
No matter how small, walking gently at lunch (even for a little while) can loosen your posture up a little bit and make the second half of the day (when your fatigue is perhaps worse) a little easier.

Take breaks
Rest when you need to. Do this as frequently as you can. It can be something simple like pacing yourself with a snack or just rising and moving briefly.

Share relevant information with your employer
Disclose information about your endometriosis if you feel able to, as your employer has a duty of care to you (and to support you) – especially if you have a chronic illness.

Have some useful/positive information ready
Save this for the bad days, read information you’ve found helpful or inspiring, use it to keep you going, this will help remind yourself that bad moments and days will pass.

Talk to others who have endometriosis
Others with the disease will completely understand what you’re going through, share how you’re feeling and what how you’re coping – you might help them in the process

Dress comfortably
Having comfortable, loose clothes will help the days when your pain is really bad. Similarly soft, practical shoes will help with movement.

Remind yourself of why you keep working
Think of your goals and what you want to accomplish. Think of how important working is to you, your identity and sense of wellbeing.

Think of the bigger picture
You may be stuck at work in horrible pain, and rather be at home or doing something else with your day, but remind yourself of what else continuing to work enables you to do.

Work at a comfortable temperature
Trying to work when you’re too cold or too warm will increase your discomfort and pain, do everything you can to be comfortable.

Take your sick leave when you need to
Don’t feel guilty about it. Note what days you take, and make sure your endometriosis pain is recorded by your HR department, follow all the proper procedures.

Most importantly

Remember that you’re doing your best, that means staying positive despite impossible odds. Focus on what you’ve managed to accomplish that day, rather than what you’ve not been able to do.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

39 responses to “How to work with endometriosis

  1. Great post Michelle. I wish i could work – it’s hit me hard since having to give it up in February…. But this would be most useful if I was working! xx

    Endometriosis my life with you

    • Yeah, I’m always mindful of the fact that I may have to give up work someday. I just wanted to do something for those of us that still work – and it’s a subject I’ll return to because there’s so much complexity out there about endo and working.

  2. I’ve been waiting to share this story with someone! Today I found a totally new challenge in working with endo.

    This morning I was in a bit of a “fog” – sometimes endo can make me tired and distracted, not by pain or anything, but sometimes it’s just hard to concentrate. When I took my vitamin with breakfast, I looked down to find a VICODIN bottle in my hand. Wow. I took a heavy does of loopy pain meds on accident. Pretty sure I’m the only person to ever do something that dumb.

    So today has def been one of those “if I can just make it to lunch….” days.

    >.<

    I've also started doing the night-before work prep. As a child, my mother always encouraged me to lay out my clothes and pack my lunch for the next day before I went to bed, and I HATED that, vowing that when I grew up I'd never do it that way. Of course, I grew up to have endo, so my childhood self is pretty disappointed. 😉

    I personally find being honest about my illness with my (male) boss to be the biggest challenge of all. For my first year at this job, I would "pretend" to be sick (croaky voice, sniffles) over the phone when I needed an endo day. It really is important to be honest about your illness! If you aren't, you give the impression that your real illness is not as bad as say, a flu, and that's so wrong! I struggle a lot with this. My readers gave a lot of great ideas and strategies on how to approach this that I posted on my blog – sometimes the comment section yields better advice than I ever could. http://doilooksick.wordpress.com/2012/04/24/how-do-i-put-thi/

    Wow, so that was the longest comment ever. Must be that accidental vicodin talking.

    • Oh dear! Happy to assure you that I’ve done lots of muddled up stuff when I am in pain and tired, so I completely understand! One I did very recently was making a cup of coffee forgetting to put the coffee into the cup and just taking a cup of hot sugary water upstairs – I put the coffee in the sink for some reason.

      Thank you I had read that wonderful post of yours once before, but I enjoyed reading it again, as I mentioned above working and life with endometriosis is a key focus of mine with this site so I will definitely return to it.

      • Hahaha yes, making coffee is a world of problems for me as well. It takes quite a few steps, and when you’re tired and hurty it’s nearly impossible! It’s usually good for a laugh though. 🙂

    • Rachel – thats exactly how I feel, I have a male boss and up until my operation I was having so many days off and he thought I was slacking off and gave me a warning, I then broke down and told him about my Endo and since then he’s been so much more understanding, I try really hard to make it into work even if I’m 3 hours late – it’s much easier when your boss understands

      • Yes, I’ve learnt over the years that a careful honesty is the best way generally speaking.

        I say careful honesty because it’s so hard not to tell everyone everything that I’m feeling or experiencing that always makes people feel sad or uncomfortable, so my general rule of thumb is enough so that someone gets the point, but not too much to make them uncomfortable.

  3. i often find it a struggle to stay focused at work because of the constant fatigue! it’s horrbile

    • Fatigue is my biggest problem at the moment – I am always so tired when working, and people think they can relate to it because they’ve gone a few hours without sleep or they have a child.

      It’s simply not the same – there are many positives about having a child, there are very few positives to a chronic illness, and chronic fatigue feels so different to a lack of sleep.

      Total side note, but trying to relate to someone who has a chronic illness by describing the difficulties of raising a child (particularly when endometriosis is known for causing fertility problems) is inadvertently heartless. 😦

      • Chloe

        Gosh I can totally relate, ignorant people at work often say to me “get more sleep” .. I have to try really hard not to throw pens at them (lol) I think unless you have it, you don’t know what it’s like

  4. Thanks Michelle, I’ve actually been having problems in this area (as well as with coming to terms with my 7 month old diagnosis) lately and this post has some great ideas that I had never thought of! Keep up the good work 🙂

    • Really glad my post has helped you – that was my overall aim you’re most welcome.

      Working with endometriosis is one of the hardest aspects of my endometriosis story so I will be definitely writing about this more in the future – what this space.

  5. Hannah

    Thanks this is a really good read on how to make adjustments at work. I have recently been diagnosed with Adenomyosis and i find a lot of similarities so I end up reading about endo alot.
    I work in a very physical job (or did work and train in gardening) and though i found it hard physically compared to previous office work, I find the outside a wonderful place to work in this condition.

    I am now looking for new work, and hopefully i can explain the situation to the employers. I think I will need to plan, plan, plan, to work through issues surrounding heavy lifting, types of equipment and machines.
    I am determined to keep on gardening and try to get a job physically gardening, if that proves not possible (even though i am sure i was adapting and making adjustments before i had my diagnosis), then i will look for work in a writing about horticulture/gardening.
    Personally I found i benefitted from working outdoors from the regular exercize, which I think helped with my metabolism, & ibs symptoms, and gardening is also a theraputic activity in itself. Also the social and learning aspects of the job are very good.
    Thanks for the info on this page and I will bear it in mind when i go for an interview tomorrow,
    take care, xx

    • Hannah, I hope things continue to go well for you!

      I’m living proof that it’s possible to work with a chronic illness, it was nigh on impossible when I started out, but you find ways and means to cope, even if it does mean making some adjustments to your working life. I think having a job that you love and enjoy passionately definitely helps, and I wish you all the best for your future working endeavours!

  6. Brooke

    I miss working so much! My endo became severe almost 2 years ago now I’m in severe constant pain and its so hard not being able to provide for myself. I can’t even keep up with my house work without putting myself in the ER. I can’t even work on a knitting project half the time because the pain makes me lose my focus.
    I love this blog. It really gives me hope. I’m so glad you are able to keep up with it and still work. You are my new hero!
    Thank you for all the great info and taking time out of your day to inspire and bring some hope us endo gals.

    • You’re so welcome Brooke. It’s not easy to work (and keep working with endometriosis) but I’m determined to keep going.

      I’m going to be writing about how knitting can help endometriosis pain and fatigue in a future update – I actually find knitting extremely helpful when it comes to the pain it’s a lovely, positive distraction. Perhaps I will share some of my specific tips that I use to help me stay focus.

      Keep up the good fight! 🙂

  7. Great post Michelle and good timing for me to read it as I have been struggling with work this week. Your advice is very helpful, thank you.

    • Thank you I’m very glad to hear that. Working with a chronic illness remains the biggest challenge in my life. Hope that you continue to find this useful. Do let me know what you’ve discovered to help yourself too. I’m also in awe, I don’t know that many people with fibromyalgia that are able to work – so please don’t underestimate the impressive feat you’re managing already (even if it is a struggle right now). 🙂

  8. Paula

    Thanks for the great article. I felt bad leaving work today. I had anxiety for no reason, an uncomfortable stomach and just felt off. It wasn’t until later that I realised it’s endometriosis playing up. Having only had it investigated in the last few months this article was helpful and made me feel like I’m not alone and it was okay to take time to feel better.

    • It absolutely is. It’s so hard to take time for yourself to rest and recover with work, when you don’t want to fail. Lots of people tell me that “nothing is more important then your health” but their health fails rarely and taking the time they need is a no brainer. Keep up the great work – you’re striving so much harder than most.

  9. anna b

    Hello, there is so much information and scare stories out there about endometriosis, but this was a really nice set of tips and helpful pointers. Good positivity with how we can view ‘work’.

    Diagnosis and the burden of endometriosis is a situation understood by sufferers but can be misunderstood by those free from it’s constraints. This post remined me again of other sufferers!

  10. Pingback: Endo, Me, and a PhD: The challenges of working and studying with a chronic illness. | The Endo The World?

  11. Anna

    I’m happy to read others are still commenting on your post. I googled how to work with endo pain and found it. I’m so happy to read the positives you have suggested. As I type I’ve got my body contorted into a position that brings me a little relief. My co-workers know I struggle with endo and at times might be working in an odd position. (I have a yoga mat I can stretch out on and work from my laptop too.) I enjoy my job tremendously, however I can’t give 100% and would love to work half time. That’s not currently an option so I do the best I can. I especially appreciate your “If I can just make it to lunch” and going for a gentle walk. Those are very helpful.

    I realize what helps but sometimes when my pain is off the charts high i can’t think clearly and it helps to read from others and unfortunately connect with others going through similar pain and fatigue struggles.
    Thank you!

    • Yes, you’re right there’s very little information on the web about how to work with chronic pain, so hopefully my update was of some use. It’s definitely a subject I will write more about in the future so stay in touch.

  12. Elaine

    Interesting post… however, I find it very sad to see that it is such a rare post. Endometriosis affects SO MANY women, and I find it shocking and upsetting to see so little information available to help people continue to work while they have Endometriosis.

    I cannot help wondering whether sexual stereotypes have a role to play in this – after all, many people still seem to think of men as “breadwinners” and women as “housewives”, so I cannot help wondering whether medical professionals (and other professionals who deal with Endo – who are mostly male, in my experience) simply omit to consider the fact that Endo sufferers may actually WORK. In a world where MEN are the ones most often thought of as having successful careers, maybe women get overlooked?

    Whatever the reason, the complete ignorance that many people show in respect of Endo is shocking. I have a diagnosis of this illness. I first noted symptoms as far back as 2002, but did not get a clear diagnosis until 2010 (after years of mistaken incorrect diagnoses). During that time, I struggled to hold down my job. One might think that working as I did in a caring profession, you would get lots of help – on the contrary, I had to struggle on unaided. If anything, my employer was completely unsupportive, and actually quite threatening. I put up with 4 years of bullying at work.

    I reckon one of the main problems is that Endometriosis can’t be seen. People seem to think that if an illness is invisible, then you must be making it up. Certainly, that was the attitude I faced. Even when you do explain Endo to people, many still find it hard to accept and understand. It’s hard, because then people do not see just how hard you are finding things, and just how much effort you are making.

    I agree wholeheartedly with your “If I can just make it to lunch” comment. I think that people who do not have Endo have no understanding of just how difficult it is to live with it. Endo makes life hard – you experience pain and fatigue, and these restrict the things that you may be able to do. Instead of just doing things, you have to plan ahead all the time. You have to manage pain control; plan ahead in case you feel unwell; you have to manage the effects of having unpleasant symptoms around the time of your period; you have to deal with constant fatigue; you have to manage your time really carefully, and plan for medical appointments or having treatment (including time out for surgery, physio, or other things). People who do not live with chronic illnesses like Endo just cannot understand how awkward and inconvenient this can be. I find individuals who treat Endo sufferers as “inconvenient” because of their illness just so inconsiderate and lacking in empathy.

    I’m currently doing Postgraduate study, and intend afterwards to return to work. My fear is always that I will be viewed negatively for having Endo – that people will not take me seriously. It is SO frustrating, working to get good qualifications, and striving so hard to hold down a good job, whilst receiving little support. If we Endo sufferers had a really obvious illness or disability – something like blindness, or Dyslexia, that everyone is immediately aware of – then I’m sure we would get much more help. Sadly, people seem only to be able to understand that which is blatantly obvious! Personally, I find it almost impossible to explain to some people that I have an illness they can’t see, but that does seriously affect me. It’s as though they refuse to believe what they cannot physically see!

    I guess the way I look at things is to try to remember I did not choose or cause this illness. I remind myself that ANYONE who lives with a chronic health problem could find life difficult. I also tell myself that there are perfectly healthy people out there who have achieved far less in life than me. I motivate myself to keep going by telling myself that if I can achieve something (even something small) with Endo, then it’s not getting the better of me. I remind myself that to achieve something whilst also experiencing the symptoms of a chronic illness is actually pretty good going. If I can achieve whilst experiencing Endo, I can (to an extent) conquer the illness… THAT’S how I see it.

    Some healthy people achieve very little in life. I know that even if I achieve nothing special – even if I simply go to University, or have a job, or get married, or have children… or whatever other mundane thing most healthy people take for granted – I have not only done it… I have done it whilst coping with Endo. THAT is what all us Endo sufferers do. I think that’s pretty impressive, when you think about it!

    Maybe employers need to think more positively about hiring women with Endo? After all, a woman who is determined to hold down a job despite suffering from a debilitating illness is a woman who is clearly tough, strong and pretty dedicated to that job. Those are qualities to be proud of.

    • Yes, I really have found a distinct lack of information on working with endometriosis. Endometriosis UK had a wonderful leaflet and part of their site on it, but I believe they’re re-reviewing the information at the moment to make sure it’s up to date with current UK legislation.

      Thank you for sharing your story. I can’t blame the endometriosis for not writing about working with endometriosis more. It’s a tricky topic and I honestly think it’s just a case that lots of people struggle or don’t want to raise the topic because they deem their position at work to be too precarious.

      Like you, I see my ability to work with endometriosis as a massive plus point when it comes to my ability and talent. It’s extremely hard to market it in that way through. Best of luck with your work in the future.

  13. Nicole

    This doesn’t actually help. I can’t do anything when I’m in chronic pain. I am a self employed cleaner and I am losing all my clients from being unreliable. I’m losing lack o motivation now and really just want to give up on life itself. Living with endometriosis truly ruins your whole life

    • Fair enough – there’s plenty of articles talking about how hard working with endometriosis is, but there’s little practical advice so I tried to change that, perhaps you have your own suggestions?

  14. emma

    This is really useful

    I suffer really bad with Endo and am going to have to consider giving up my job which I love! But I just cant cope with That and my symptoms but I cant afford to loose my income is there any help if you have Endo!?

    • Depends on where you are in the world Emma, but many people have successfully argued for endo to be considered under disability legislation – it’s not easy though. You’d think it would be.

  15. Emma

    A really great read, thank you for addressing such an important issue. I suffer from both adenomyosis and stage 4 endometriosis. I work full time, and it is difficult managing this alongside the pain and fatigue. However, I love my job, and simply have no choice than to work full time to support myself. I’ve found it very difficult to take when people have suggested to me that ‘things can’t be that bad’ if I work full time. I would like to see anyone manage chronic pain on a daily basis alongside working full time and say it isn’t a huge challenge. For me, it is only made possible by removing any aspect of a social life to ensure I can rest and recuperate.

    I have enough severe health issues that I have no doubt I could claim disability benefit and give up full time work if I choose too, but I never will. It is incredibly difficult, but I’m immensely proud of what I achieve alongside my chronic pain, and that keeps me going. Thank you for expressing the challenges those of us with endometriosis face when pursuing a career. I am not suffering less than those that cannot or do not work with endometriosis! I simply have to support myself.

  16. Pingback: Employment & School | endo[me]triosis

  17. Charlene Johnson

    I recently went to school hoping to be able to work from home. Now, 70% of the way through, I may need to complete studies part time as my flare ups have become more consistent – stress being a big factor.

    I’d like to note that there are many stressors that affect my health. Because some of these stressors are nothing I can change, like other people’s decisions (family issues that affect me), I have to remind myself that those are out of my hands and I have to do what I can to make things healthier for me. It brings me to tough love for myself at a time when I am exhausted physically and mentally.

    I used to be the optimist because I was given ample time between flare-ups to “play catch up” on everything that had to be put on hold – work, friends, everyday things. Now, because it’s constant, I’m in a rut.

    I still feel hope that this can all change as I hatch a new plan from what I have accomplished. Really, when you have little things you can do to make a difference, it’s a start. Lately, I just feel like it’s Groundhog Day (the movie) every month or two and then yearly when something fails to work due to my inability to be consistent with it because of pain getting in the way. After a while it gets so frustrating to have to “redo”, or “start over”, or “pick myself back up” that it seems my energy is only going into the beginning stages of starting again. By the time I get mid-way through something significant, I’m pushed back down.

    So, I guess it’s finally time for me to think outside the box and care little about what people think I should do, or ignore my ideals from what I’ve been taught. What I mean is, this is not a time for me to “soldier” through things and be that “hero” who exhausts themselves working so hard they’ve no time for doing something nice and refreshing instead. I have to take a different perspective and THEN figure out what the horizon is going to look like for me.

    Here’s to a different, un-nuclear family, un-picket fence, un-Doris Day, un-ego outlook. Here’s to my reality, my spirituality, my health, my love of self, and my WELL being.

  18. Holly

    I think I have undiagnosed endometriosis. How can you get the doctors to listen to what I’m telling them. I have severe cramps in my back for 5-7 days during my period. They are basically crippling. I become exhausted, to the point my brain becomes foggy and simple tasks become nightmares, and my moods even gets to be beyond wild. To top that all off I work 12 hour shifts rotating days/night which require a lot of physical activity and heavy lifting, and even the safety gear becomes a weight on my body. I refuse to give up my job and I’m at a loss of finding help and treatment. Please help! How to you find energy to get through, and are there any better tricks to dealing with the pain and exhaustion? I live off of Midol, Advil, Aleve, and A5-35 rub during my time of the month. It can’t be healthy to ingest so many different pills.

  19. Gretchen Decker

    This was so helpful. I was diagnosed a little over one year ago and have already undergone two surgeries. While that has helped relieve excruciating pain, I have been out of work on short term disability for 8 weeks. Going back to work has been such a headship and this article helped to give me tricks so I can eventually function back in the real world.

    • No problem Getchen. Remember to take things slow and steady as many people are keen to catch up after a long time away. Listen to what your body tells you and act accordingly 🙂

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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