Working with endo, need advise!

I had my endometriosis removed in december and things were great until a week ago, when all the horrible pains came back along with be drowsy and sick. Once again, I've had to have time off work, and the days that I'm out of the office are increasing. I went back to work after 2 days off, and my boss who is female (thought she would be more understanding!) has starting to get annoyed with me being off all the time. It really seems like my job is on the line and I'm so scared of being ill once again and having to have time off work, I'm forcing my self to go in everyday and put a brave face on. I just wanted to know if anyone else is having problems with work and how they are coping with it? xxxx

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  • hon u are not alone with this one..i have numerous problems at work. i am a teacher and it is difficult for me to write on the board now. my class is on the second floor and climbing the stairs is overwhelming. i stay home quite frequent too and like you my job is on the line, my director being female understands but my real boss don't give a darn what i have and how it affects me. for her once i cant perform i will be fired. living with endo is difficult for us and it makes us unable to have a normal life but we have to cope with it one way or the other. i really hope that your boss goes light on you and try not to get too worked up. don;t push yourself to do what you can because the pain will increase. i get lower back pain everyday because i stand and walk a lot throughout day and i get it even when i sit but i have to do it. i wish you all the luck hon

  • If your not already, contact your local Endo Support Group for advice, plus make an appointment with Citizens Advice. This makes me so angry, having just woken from a night of terrible pain and the accompanying stress, I feel the pressure to once again, become an economically viable working member of society but the fact is 'I am unwell and in pain' alot of pain! For those with the crippling condition struggling to work, this is absolutely appalling and is the frightening reality of the shocking lack of understanding about endo and adhesions and it's disabling effects. I will never forget coming round from one of many operations for these related conditions 'endo and adhesions'

    to be told my endo was extensive and had tethered tube stump (prev removed) to bowel, and ovary to bowel, plus it had spread into my stomach along with substantial widespread adhesions.

    After diagnosis a friend casually passed comment stating "now you are vindicated"! This comment has stayed with me and is a typical reflection of society's judgement upon a sufferer of endometriosis and adhesions.

  • Hi Lamorna,

    So sorry to hear you are having work issues! I too have had a lot of time off due to endo. It sucks!!

    I think the following is correct - but please anyone shout out if I've got it or anything wrong!!

    As Endo is a long term chronic health condition, you are (if in the UK) protected under the Equalities Act 2010 - here's an exceprt:

    "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."

    gov.uk/definition-of-disabi...

    If you feel the above statement applies to you - then you are further protected by the disability discrimination act 1995.

    legislation.gov.uk/ukpga/19...

    Therefore, your employer by law needs to make "reasonable adjustments" to your work patterns. If they aren't doing this, then they could potentially be in breach of their duty of care to you, their employee.

    I work for an employer that has a large workforce, so the systems, policy and procedure are in place.

    The process they took with me was (I'd hit a sickness and absence threshold so was sent to HR and Occupational Health, I also have another long term Health condition a type of arthritis called Ankylosing Spondylitis, however, these workplace absenses were soley due to the endo...ouch!)

    They anaylised the absenses, I brought specialist and GP reports with me. They looked to see if there was a pain pattern emerging to be able to predict when the pain would hit (on contraceptives 3 months back to back so every 3 months!) and made the "reasonable adjustment" to work patterns: on those days I may work from home, or if really bad, then have extra "allowance" days. (this is how it remains for me now)

    The next stage the employer would have to try if the reasonable adjustments didnt work -- would be for example, a potential re-deployment within the buisiness to a less stressful/ less aggrivating role, with a potential readjustment working hours etc

    The government wants people to stay IN work, so protects individuals from being dismissed due to long term illnesses.

    Here's another excerpt where employers have to exaust this list:

    (3)The following are examples of steps which an employer may have to take in relation to a disabled person in order to comply with subsection (1)— .

    (a)making adjustments to premises; .

    (b)allocating some of the disabled person’s duties to another person; .

    (c)transferring him to fill an existing vacancy; .

    (d)altering his working hours; .

    (e)assigning him to a different place of work; .

    (f)allowing him to be absent during working hours for rehabilitation, assessment or treatment; .

    (g)giving him, or arranging for him to be given, training; .

    (h)acquiring or modifying equipment; .

    (i)modifying instructions or reference manuals; .

    (j)modifying procedures for testing or assessment; .

    (k)providing a reader or interpreter; .

    (l)providing supervision.

    You have rights! Don't let them beat you down - and women can be TOTALLY worse than men with the sympathy with Endo argh! makes me annoyed!

    Hope this helps! hope you feel better soon!

    and check out the relevant legislation and stick it in your BOSS's unsympathetic FACE!

    (ha -don't really lol. OOOOh I have the endo rage today! let me at 'em, let me at 'em! ha ha ha)

  • Just wat I needed !!! Thanks I've just been docs an he thinks I may have lupus aswell I'm already on a written warning. @ work straight from no stage @ all 7 entries of sickness in 1 year no understanding @ all there so I may get a solictor readt an preped xx

  • Hi Lamorna sorry you,re suffering. Funnily enough I had surgery in December too and my pain has been back for the last month. It would be so good if we could be fixed wouldn't it.

    Re work, I work as a cleaner and it's quite physical. Do you find your pain is worse when you're sitting or lying down? Mine doesn't seem so bad if I keep moving but there are obviously times when I need to stop lol!

    See if you can see your doctor for some advice and suggestions for coping with the pain. I saw mine two weeks ago and am now on antispasmodic meds. They do seem to be having an effect on the pain that tends to build up at the end of the day.

    Hope this helps x

  • Hi purbleburple,

    I do not have endometriosis so I cannot exactly relate to what you experience but I do empathize with someone experiencing chronic pain as I have arthritis in my spine and pelvis due to a car accident many years ago.

    I represent my employer and am trying to find accommodations for one of our cleaning staff who has recently been diagnosed.

    I have read many articles and community testaments that say pain varies in severity and some days are better than others. I'm trying to find as much information as I can.

    As you mentioned that you are a cleaner as well, I was hoping you could offer up some advice to me how I can work with my staff member.

    Being recently diagnosed she is (understandably) angry with her circumstances. She has told me she can't do things like she used to so why should she do them at all.

    We have discussed proper lifting techniques for desk side waste and recycle and proper techniques for vacuuming. Where she experiences the most difficulty is cleaning the toilets. I have provided her with long handled brushes for inside the bowl and around the base so she does not have to bend or lean at all. She has a stool to sit on so she does not need to bend or lean while cleaning the seat and tank. Is there anything else I can do for her? I've brought in an ergonomist to work with her as well.

    Right now her response is "no, that won't work" to every recommendation, she is not forthcoming with any solutions, I presume it is because she is angry.

    I realize that any accommodations I make will not make the pain go away for her but am looking for techniques that would minimize the activities that cause her pain to increase. I'm kind of lost with this and I was hoping you could shed some light on how you manage?

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