Endo and work?!

Hi guys, im new to all this forum stuff so bear with me as im about to tell all...

Im 24 years old and ive suffered with horrific pains since i was 16, after years of being treated like i was playing up 'period pains' and being put on every pill known to man i finally got a referral to a gynea and soon had a lap in early 2012, and ta da they found endo on quite alot of areas. I felt so relieved that theyd actually found something i could pin my pain on. After a couple of months the pain started coming back and worse, it felt like because id attacked it it was coming back with a vengence to tell me it would win not me. After being told to wait because they didnt want to do anymore surgery, i was told to try and conceive because they feared if it was all coming back worse my chances would be small, after trying to fall pregnant from summer 2014 they agreed to do another one in june 2015. Where they found severe endo (which they had to leave some so they didnt cauterise one of my fallopian tubes), retroverted uterus and adenomyosis. Which thoroughly freaked me out as i was only 23 and they reccomended trying to have a baby or inducing the menopause. Since then weve tried for a child with no luck apart from once when i miscarried. I feel so low from dealing with it all and the pain is coming back again. I also had to take two weeks off due to severe pain near my rib cage which my doctor suspects is a patch of endo that has migrated to my gallbladder area. Because ive had to take time of work here and there when i physically cant push through it even with heavy painkillers, i fear they are going to take action. Id just like to know how you guys have dealt with endo and everything that comes with it including trying to concieve and how to deal with work when you cant explain how much endo affects your lives? I was debating getting my doctor to write me a letter so i can take it to work, so they can read how im affected and cant help that ive got a horrible condition that they cant see. Had anyone else done that? Sorry ive rambled, had to speak to people who might be going through the same thing as me, thanks emma x

16 Replies

  • Hi Emma, sorry you're having a shit time with it all... I sent my HR department a link to one of the Endometriosis UK web pages that explains what it's all about, saying that despite taking hormones, painkillers & using TENS machine it's not enough & asking if I can do work from home when required. That got passed to my line manager & company director (who approves WFH requests) so it's up to them to click the link if they want to know more, but I feel that at least I've covered by back so they can't turn around and say they never knew what I was going through.

    I did specify that I was in pain & was sleep deprived because of it and "suffered other symptoms too" - vague enough so as not to embarrass anyone but I think enough detail so they can't bollock me for being 'late' most mornings.

    You know what your employer is like, but what they don't know, they can't do anything about & they may be scared to ask x

  • Thanks for your reply, its horrible isnt it? The only thing is i work in a big shopping chain so id be unable to work from home... they knew about my condition when they took me on, but i feel like because they cant see the condition they think im playing on it. I hate taking time off because i love my job, but sometimes i physically and emotionally cant do it

  • That's tough, but I know what you mean - you never want to be known as 'the skiver' or as being 'unreliable', which is why I was resorting to using annual leave days last year so as not to be off sick too often. I'd be doing work at weekends and was doing it over Christmas break too. There is a physical side to my job which in having to leave to my colleagues to do, so I feel like I should be doing more 'office/paperwork-based' things to try to make up for it.

    But I'm starting to be more open with people as to how I'm feeling & what's going on (without making myself 'the complainer'!), because let's face it, I wouldn't know how something like diabetes for example affected a colleague unless they told me, as I don't have it myself xx

  • Ive printed off some info to give to my boss, and i'm going to the docs to talk some more about concieving later, so i'm going to ask if they can get me any info to give them too.

    Ive told some of my collegues about what i have but they just think its bad period pain, its so frustrating

  • Hmm... for my (male) boss, I just explained that "my insides are f*cked but I'm doing all I can to fix it", for the ladies I've given them a few gory details... 'it's a little bit like the uterus is inside out, when it bleeds it has nowhere to go so causes lesions & scaring, which hurts like hell' which they pull "ooh, that must hurt!" faces at, but then I have a colleague who then proceeded to go on about her itchy skin condition as though it's in the same league... 😝

    I'm not trying to score points on 'who is sicker than who' but it helps to know if your colleagues understand or not, doesn't it? Hope your GP has some info & can help with the baby making ☺️ (So to speak!!)

  • Hi, I work in housekeeping department of a hotel, which is a female dominated field. I told my boss that I have endo and I might have a laparoscopy in spring so I'll need a longer sick leave, I was afraid to tell her because our job is very physical and having health problems might make you too slow, therefore not a good employee (speed is very important, given our company is paid according to how many rooms an hour we can clean). When I told my boss, she said she completely understands because she's had six laparoscopies already and has had endo for years! And my shift supervisor said her friend has endo so everyone at work understands. Don't be afraid to take action and inform your supervisors at work because you never know, they might be very supportive. And if they're not, well, still better to let them know, so they can't accuse you of just being lazy. Have your dr write you a letter, I think it's better to have it in written form from a doctor.

  • Ive managed to find a document by endo uk for employers so im going to take that in. But thankyou for your reply, gives me hope ill be taken seriously!! And good luck with your lap!

  • Thank you ladies for this interesting history or pa can I express what I had to go through because I am new to this forum?

  • Yeah sure :)

  • So I have a post op appointment today forllowing my lap surgery from removal of lesions and adhesions. It was been two weeks and I still not feeling my best. I am concerned with work and ,y doctor if he would give me at least two more weeks because I am not physically feel better or mentally ready. I do not even know what to do.

  • You should go back to the dr and tell them how you feel, it takes different amounta of time for everyone to get bk on their game after. After mine i had two weeks off then lighter duties when i went back. Maybe your employer could do that for you?

  • Hi I had a post op appointment today from my lap and my doc would not give me another week or two to go back to work. I don't understand. I am not feeling to good obviously so I was wondering does anyone have any ideas on what I could do. Should I just go ahead are quest another week off work myself or just go back and feel as crappy as I'm feeling now?

  • Youve just got to do whats right for you, only you know if you feel up to it. If you do go bk at least youll be at a desk, i work in a shop where im always on my feet! Really needed a sit down after my lap!! Do you have to have a bk to work meeting? If so you could tell your manager how your feeling and they could suggest eithef more time off or lighter duties? Its different in all companies

  • Thank you for your respond and no I do not have to have a meeting o just go back with my release forms. Which my doctor did not give me. I feel so horrible.

  • All I know is that I have had excruciating cycles since I have had one and that was at the age of 13. I always complained about my cycles to the doctors and everyone else. I would have to miss school and work because if the pain. And this pass lap was my first one and I know it will take some time for me to getting better but I definitely do not feel,better enough to go to work although it's an at desk position. I am just praying my doc will give me more time to be home. Because when I go back to work I want have anymore time to take off for the rest of the year. I'm so sorry to be complaining but it seems like no one understand me. It's like people have worst situations to mines but I don't know if I'm making a big deal of it or not. But I do know that I am not physically or mentally prepared to go back to work and I don't want my doctor to send me back .

  • What if my employer font, because my health is very important. Or what if my doctor says no.

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