Not yet diagnosed, in trouble with work - help!

[katiesinead]

Hi everyone,

I've posted previously about my periods, and the symptoms I have that seem to indicate endometriosis. I was referred to a gynaecologist last February, however my appointment was somehow disrupted and I ended up just going for an ultrasound where they found I had a retroverted uterus and they also said my womb lining was 'too thick'.

Shortly after that I moved to Scotland from England, and had to transfer doctors etc. My doctor in England told me to get another referral with my new doctor. When I moved I got a job in a supermarket and waited for my doctor transfer to go through, which took way longer than I expected. Right now I have only just got my referral to the gynaecologist at the hospital up here, and it could take longer than 12 weeks, I don't have a date yet.

My problem is that I have excruciating pain and my periods are all over the place, I sometimes feel physically unable to go to work and due to that I have had days off. I'm not off all the time, I mostly just dose up on solpadol and mefenamic acid and brave it, but the pain seems to be getting worse and worse as time goes on. My periods have never been regular, but lately I can bleed for 3 months at a time, have a 5 day break and then a period for another month.

I had 3 days off work in the past month due to this and phoned in sick the other day to be told by my manager to expect a disciplinary when I get back, that I will have to have a meeting with other managers and a written warning. He also said I could have a witness? I had 2 days off at the end of last year also.

I like my job, I've never been in this position before and I feel really bad about it, I only take days off when I physically can't walk due to the pain and have to stay in the foetal position most of the day.

I was just looking for advice on what to tell my managers when I have a meeting. I just feel like if I say I have bad periods they won't understand at all - I did mention to my manager I had been referred to the hospital but he didn't seem to really care so I'm not sure how to phrase it?

Any help, advice or similar experiences would really help me, thank you!

Katie

[maxine71]

There used to be a leaflet on endometriosis uk that was for giving to employers. I was lucky in the sense that I worked for myself, I was a mobile hairdresser, and once a salon owner, with very successful businesses, in the last five years I've gone from working fifty odd hours a week to just 12, and now nothing, it's so hard to explain that symptoms can change not even on a daily basis but an hourly basis, I can be curled up with hot water bottles for hours, and then suddenly it lifts, the trouble with invisible illness, people can't see it so they don't believe it. I will check on the site later but it used to be in with their downloads section. Good luck, and try not to stress about it xx

[katiesinead in reply to maxine71]

Thank you for your reply,

I completely agree, I work for a big company with a lot of staff and managers at my work place, they are very strict when it comes to being absent. When I phoned in sick I was practically crying in pain, booked an emergency doctors appointment for a couple hours after and by the time it rolled around the pain had settled massively, only to come back again that night.

Something to give to my manager would be useful, but I've not yet been diagnosed with endo so I'm not sure if it would still apply?

[maxine71 in reply to katiesinead]

But you can say that the doctors and hospital suspect you have it, and you are going through usual investigations for it, things have to be investigated to either confirm or eliminate them. I can imagine it just be hard, I worked in a very well known big supermarket many years ago, and sickness had a limit of 5% which isn't a lot, there used to be a whole rigmarole of back to work interviews or being 'monitored' once back. Nobody fakes this condition, nobody wants it, it's just unfortunate that people who have never experienced any kind of chronic pain or illness will simply not have a clue, and will just think we're trying to pull a fast one. Sorry for going on, but I feel for you, and I get angry at the low profile of this disease, because it's not life threatening, but it is life changing, my life has changed in so many ways, I've lost work, friends life events, because people just don't understand, the worse one was when I started to tell people I was diagnosed their reply 'oh Ye, bad periods isn't it, Ye I get that'

I'll have a look for that leaflet xx

[katiesinead in reply to maxine71]

I think we must work in the same supermarket, I have my back to work interview today I think, no idea what to expect but I will use some of the advice provided on here. I feel angry too, I'm not even sure what I have yet and why I get so much pain - I am still quite young and I don't feel like I get taken seriously at work when I am ill like this.

[TitianRed321 in reply to maxine71]

I absolutely agree with you about symptoms changing on an hourly basis - when I got up this morning, I felt relatively ok but an hour later I was doubled-up in agony with endometriosis/bowel symptoms which have been aggravated by my period. I am now lying in bed with a heat pad across my abdomen/pelvis area in an attempt to alleviate the symptoms.

[maxine71]

endometriosis-uk.org/sites/...

[urgley]

I was told by the gynaecologist that I can tell by employers I have "chronic pelvic pain" and am under investigation by the hospital. It's really tough when you don't have a definite diagnosis x

[katiesinead in reply to urgley]

Thank you,

Have you experienced anything similar with work? I hope it all gets sorted out soon and I get a diagnosis with endo or something else. x

[urgley in reply to katiesinead]

luckily my work have, so far, been very kind to me. I've had two days off this year (only had one in the 3 previous years), so am fully prepared for the absence management proceedings. I have to fill in a back to work form every time I have a day off and discuss it with my line manager...

hope your journey to diagnosis is a speedy one x