Word options and advice would be greatly appreciated.

[TitianRed321]

I am really worried that I am going to lose my job due to my endometriosis. I've had two operations due to endometriosis in recent years, and along with time off for a bout of severe depression which I went back to work far too early from, this resulted in me triggering the absence management policy at work. After I returned to work in May 2015 following my second operation for endometriosis, etc, two weeks earlier, I was referred to an Occupational Health nurse at my workplace. I was told by this 'health professional' that 'there was nothing wrong' with me and she said 'you do want to keep your job, don't you?' I was horrified that I went back to full-time work following urgent surgery (the hospital used the word 'urgent') to this appalling response. I went home after work that day in tears and haven't been able to forget this woman's attitude towards me. I wished I had lodged a formal complaint but I felt, and continue to feel, so unwell and exhausted most of the time, that I don't have the strength to fight the illness let alone these ignorant attitudes.

6 months after the second operation, I started getting excrutiating bowel pain before opening my bowels. I went to my GP who diagnosed IBS and referred me to a sonographer. When the sonographer conducted the ultrasound, she told me I had 'kissing ovaries' and confirmed that my ovaries are bent backwards and attached to my bowel. She said to me 'wow, you must be in an awful lot of pain'. I couldn't thank her enough that someone was finally acknowledging the pain I am in. I then went back to the hospital where the Consultant confirmed that I have severe endometriosis, ovarian cysts, etc. He said I am 'one of the unlucky ones in which it recurs very quickly' after surgery and I am 'highly unlikely' ever to have children. He has now put me on the waiting list for surgery again which I am reluctant to have due to needing more time off work; however, my Consultant told me that if I didn't have the surgery done then I run the risk of the ovarian cysts bursting and then ending up in the hospital for emergency surgery.

Unfortunately, all of this has come at the same time as my department at work goes through a job restructure. My job doesn't appear in the new structure which is causing me a great deal of anxiety (on top of the 'high levels' of depression and anxiety I have already been diagnosed with) as I think my employer could see this as an ideal opportunity to try to get rid of me due to my sickness absences.

I have started looking for other work (in part because I have also grown to dislike my current job) but I think it is fair to say that it is highly unlikely that an employer is going to want to hire me with my recent track history of having to have surgery. 

I currently work 4 days a week (34 hours a week). I would like to drop more hours due to my poor health but financially my husband and I can't afford it. 

What financial help, if any, is available to endometriosis sufferers who are too unwell to work or who have been unable to find work due to their absence history? 

I would also appreciate some ideas for working from home and feedback from those are currently working from home. I am 40 years old, and I am qualified in art and design, and business and administration).

I am eager to continue working as much as I can with this condition (which is becoming very challenging), but I need to look at other work options given the situation at work.

Thank you all so much, in advance, for your help.

[merlin19]

Hi,

I am sorry to hear of your current situation. I am in a similar situation myself going through occ health at work for a lot of time off. I am also getting to the point of thinking of what I could do instead and have started to look around for work from home jobs. I'm at very early stages so can't offer much advice but I have seen some positions on regular job sites for home based work in a few different areas so you might well find something to suit. If you wanted to go the self employed route there are also sites around freelance work opportunities where you might find something that meets your needs. I would also be interested to hear the thoughts/advice of anyone else on here who has managed to set something up from home, I know it would be a big help to me if I had something more flexible. 

Best of luck, and I'd like to hear how you get on!

[TitianRed321 in reply to merlin19]

Thank you for your reply and for your advice. I am sorry to read that you are in a similar situation to me. I hope you find the ideal job post you are looking for soon that will suit your requirements. I'll let you know how I get on with my job situation. Good luck! 

[TitianRed321]

The first word of the title of my post should say 'work' not 'word'!  

[TitianRed321]

Thank you for your response, Lindle.  No, my next surgery is not scheduled to take place in a BSGE specialist centre.  Unlike my previous GP surgery, my current GP surgery has not offered me a choice of where to be treated for either of my last two surgeries. To be honest, I was not aware of BSGE specialist centres; thank you very much for making me aware of these. There are no BSGE specialist centres in the county in which I live, but there is one in the next county. I am 8 weeks into my wait for my operation at my local general hospital. How easy is it generally to be taken off a waiting list and put onto one at a BSGE specialist centre? I have read your post on the treatment pathway with great interest; thank you making me aware of this too.

The procedures I am due to have are laparoscopy, ovarian cystectomy, cautery of endometriosis and adhesiology.

[TitianRed321]

I am in England, Lindle.