Work, Living & Endo!

Ok, so this morning I wrote how I was on the verge of losing my job. This evening I received a hand delivered note, two sentences long saying I was unsuitable and unreliable. I've been at this job nearly three months. I've had one absence and had to leave early on another occasion. This is now my third job I've been asked to leave because of Endometriosis.

Just wondering what others have done when unable to work? Do I qualify for any disability benefits? I signed a petition to get Endometriosis on DLA a while back. But unsure if there is anything else. I was planning on moving in with my partner. Currently back at my Mum's after losing my last job and my previous relationship ending 18 months ago. So luckily I'm not panicking trying to find rent just yet. But after 12 months of being with my partner we are looking to move on to the next stage in our relationship. But how can we do this when I will only be receiving £60 a week?

I'm now reluctant to apply for another job, unless its a work from home (and they're mostly little pay). I suffer from depression, and losing this job came as a huge blow. As did the others. I feel I am setting myself up for yet another failure if I jump straight into a job without any sort of improvement in my condition. How am I supposed to resign myself to the fact I cannot work though. At 23 I am definitely too young to spend my life in these four walls. Waiting for the next flare up, if it decides to go down that is. Been three weeks of constant pain this time.

This is what they don't tell you in the leaflet you get from hospital. That it's never just going to be pain and treatment and BAM! solution. Endo takes everything. Just hacks away at your life. Just a good job I'm a fighter. I've been through some crap in my short life. But even I'm shocked and slightly scared with how strong I've become with my Endo. It likes to fight back though. And that's the problem.

13 Replies

  • Sadly some employers don't understand the impact endometriosis can have on daily life's have u tried to see if u can do part time work as I work only part time but Iv had a few flair ups and my manager has been great and put things in place to make my job a little easier I would maybe go and see citzen advice and see if there is any benefits that u might be entitled to I wish u the best of luck and hope things work out for u xxx

  • My last job was part time. I even printed information packs off for my managers. But they just didn't understand it or more to the point they didn't want to understand it. I'm going to be ringing around advice lines today. Thanks for your reply x

  • Good luck I hope it goes well for u hunni xxx

  • I am very sorry to hear what you are ecperiencing.

    I have been OK up until now. But recentlty, I am not feeling good and will be changing my job. So I am half thinking I will not be able to start the new job or I will not be able to keep it due to the condition I have or planned surgery. It will be nice if endo is disability and recognised amongst many people that we are doing our best to try to work.

  • I know. I'm on a one woman mission to bring awareness to all my friends and any people that I come into contact with. Especially through Facebook. With my last employers I've even printed out information packs from Endo UK. I'm going to be ringing around various advice lines, for Endo and Benefits today. Will post any updates I have.

  • Sorry to hear of your experiences.

    I think the answer lies in getting properly treated for endo. What treatment have you had so far? Are you with an accredited endo specialist or a general gynae?

  • I've had multiple contraceptives in the past, and tried prostap but hormonal treatments never seem to agree with me. I have recently been transferred from the general gynae to the Endometriosis centre at Royal Preston Hospital.

  • The good news is that you have been transferred to an accredited endo centre. Do please tell them about how disruptive endo has been in your life e.g. losing jobs, financial hardship. Obviously I don't know you or your full history but it sounds as though you would benefit from specialist surgery. I know that the pill or coil works for some women but ultimately I believe good surgery is the key.

    If it's any consolation, I had fairly major surgery for a very bad case of endo at the end of May and 4 weeks after I was absolutely fine.

    If I were in your shoes, I'd focus on getting proper surgery followed by recovery after which you can focus on getting a job that suits you. Once you've done that you can start thinking about moving in with your partner. Doing everything all at once will get you into more health trouble. I think you know this already as you say - " I feel I am setting myself up for yet another failure if I jump straight into a job without any sort of improvement in my condition."

    On the benefits question, it is extremely difficult to obtain anything over and above the norm. You could potentially waste valuable time and energy trying to get more with no guarantee of success. I feel your energy would be best spent on preparing and getting proper surgery. It's a tricky thing informing employers. Leaflets and Endo information read like a horror story for the uninitiated and they will be tempted to get rid of you after reading about what is involved.

    Certain diet and lifestyle changes can also be implemented. this is a very good site and there is plenty more online

    Good luck with your appointment at the endo centre.

  • Some of the answer definitely lies in getting an effective treatment. It has taken me 9 years to graduate as a vet in part due to endometriosis and I've battled through all the long hours at uni and found ways to manage. Having said that the current treatment isn't always effective and I am going back to my specialist after getting through my 12 weeks trial period at my current job.

    I haven't yet informed my employers of my condition but will have to soon. We are yet to see how it goes down.

    Unfortunately I have always found that life with endo is a constant battle. I no longer go out clubbing with friends as it knocks me too badly and it's an early night every night I'm not on call so I can cope when I am on call but I guess to a certain extent I have accepted that I just can't do everything that women without endo might be able to do.

    Don't give up though, keep trying different treatments and if you feel you want to work, look for an environment where a) your colleagues are supportive and b) you enjoy the job itself. I find these things help immensely and I am keener to battle through on the bad days because I am very lucky to have such amazing colleagues and such an amazing job.

    Best of luck for the future and don't give up. You deserve a normal life and even if you have to fight for it, you should get it!

  • Having a job you enjoy is very important in reducing stress. I have found with my, as yet, undiagnosed Endo that stress is a huge trigger with pain and the terrible gas I've been experiencing.

    Do you track your cycle? I've been able to manage my stress levels better when I know I'm going to ovulate. I suffer from bad mood swings and anxiety attacks but can say to myself "it's ok to be like this, it's my normal" during these times.

    I recently started a new job, not enough hours to pay the bills but getting there. I haven't told my boss yet about my condition, all she knows is I can't have dairy. And because I enjoy my new job I can suffer the pains and other ailments with Endo a bit easier.

    The problem with employers is they don't care if you're sick, they need happy healthy people to do the job, sick people can't. I'm afraid that's life and it sucks. All they see is someone who will drain their sickness pay.

  • I really feel for you, I was 'lukcy' in one respect working for myself, I was able to slightly tailor the hours of work around when I was really suffering, however, the cracks will always start to show and little by little as you so well describe, endo started hacking into my life like you and it takes so much away. Yes, endo makes you a fighter and be very proud of what a fighter you have become, don't ever lose sight of that, it starts to become the norm to use fellow sufferers how much we're prepared to put up with and fight through, but allow yourself a boost sometimes and recognise the strength you have. Employers will never understand, I worked on my own and my clients never understood. Whichever way you work, there are issues yet so little understanding or compassion. I'm in the midst of trying to see if I can focus my energies into an entirely new role re work wherby I can use what I have learnt battling with endo to try and look for a total different job, but it's easier said than done I know. I don't know the answer, but I just wanted to write to say never give up fighting, I know it is so hard and I just hope one day that our fight gets recognised. All the very best x

  • Hi, you are entitled to dla whether you are working or not if your endo is severe and affects you on a day to day basis.

    You may also be entitled to esa but it depends on your circumstances - have a read at this

    There are also means tested benefits I.e. Housing benefit and income support (or whatever they call it now!) however it makes you very dependent and if your partner is working you may not qualify for anything means tested when you live together.

    If you are having difficulty holding down a job have you considered a) pursuing surgery (or further surgery) to try and tackle the endo b) maybe doing a course or something so that when (fingers crossed) your endo is somewhat better at least you won't have a lapse in your cv.

    Ie. If you study - you get funding, they can't discriminate against you for having a disability and will be flexible, you'll come out with something that could help you go for a better job, maybe less tiring(?) and for better money so you could work less in future.

    Just a thought - don't let endo take over your life - there are ways round it to get what you want x

  • I'm so sorry to hear about this - it's actually illegal for employers to fire people due to a disability without first making reasonable adjustments, for example they could give you flexible working hours, so if you had to go home due to pain you could make the time up later. You *are* legally entitled to all the protections the disability discrimination act gives you if your condition interferes with your ability to carry out every day tasks other people manage:

    "You’re disabled under the Equality Act 2010 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." - from the government website

    DLA is being phased out, but I get PIP (personal independence payment, the new version of DLA) for endo and mental health issues. The questions on the form are not suited too well for conditions involving chronic pain, they are more geared towards conditions that restrict mobility, but if you think of your worst day and answer them that way, it becomes obvious that endo causes those kinds of problems. I get the lowest rate for care and no mobility component, and to be honest I could have appealed on the basis that they ignored a lot of what I said that could have put me in a higher care bracket, but I was just so relieved they gave me *something* lol.

    You should also be entitled to employment support allowance, the work group of which is like jobseekers for people who are out of work due to poor health. It might be worth you going to see someone at the Citizen's Advice Bureau to talk all this through, they are really good with benefits, work and health issues. I know none of us wants to be on benefits - I hate it, I'd rather work full time - but you're doing your best, and it's not fair you keep being treated so unfairly, so it seems sensible to look into financial support while you are looking for some sort of solution (better job, better treatment for the endo, anything that helps!)


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