Endometriosis UK
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Employment & Endo

Hi Guys. Just been diagnosed with endometriosis and had first laparoscopy after years of pain. My symptoms have worsened in past 2 years since I came off the pill, had Mirena coil fitted during op so trying to think positive that will help!

Consultant advised me to accept that I will always have Endo now and need to learn to live with it.

I have a very stressful job with a ‘caseload’ style of working. I manager to take TOIL/flexor where possible but over past 6 months I have been taking 2-3 per month. I have spoken with Occupational Health. Just a little worried incase the coil/lap make no difference to pain I am not sure how long I will be able to continue with my job.

How does everyone else manage? Any advice?

Thank you x

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Hello, I found, like you, I was having to take 2-3 days off each month to cope with Endo pain. I arranged to work from home a day a week, so I could at least reduce the stress of having to go in on a flare up. My new manager didn’t like this flex working. She wanted me to announce that I was going to be taking sick leave days for my period. This increased my stress. I then was made redundant ( surprised?!).

I had two laps after that during the next six months, where I managed just on my redundancy pay. Then I applied for jobs that were way less stressful. I’ve taken over £10k pay cut to manage this disease. I work from home with occasional driving to meetings. As I manage my own diary and have gone from working five to four days per week I feel more at ease as I also don’t have to travel in each day to an office.

It has been hard, but the main outcome is I’m taking care of myself to manage Endometriosis. I’m happier, better at budgeting(!) and able to exercise and eat more healthily than when I was stressed in an office 9-5 Mon- Friday.

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Just to check, does your role no longer exist then? Did they cut the numbers of people undertaking your role because if not they have no right to make you redundant. As for your former manager, they can like it or lump it, they have a duty to make reasonable adjustments for a disability (endo is a disability as defined by the equality act). Flexi time used in this way would be considered a reasonable adjustment. I only mention it so you are aware - if they have contravened the above I would talk to a solicitor.

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I had to reduce my hours too. I used to work over 80 hours a week including 11 days in a row. I reduced 1 day a week and stopped on call. I took a massive pay cut but was given little option. My future prospects in the company went from heading for promotion and to be one of the bosses to someone who had " misunderstood" a lot of conversations.

Unfortunately I found it impacted on every area of my life. I don't have the energy to go out at night, plus it has caused so much damage I can't really drink alcohol. I have to pace myself regards doing things - I can't have a busy day the day before I am working ( I now work even less, due to endo and kids).

You do have to manage things. You will spend times being angry at it but life is how it is.

Hopefully the mirena coil will work for you as it has for many women. Unfortunately while it helps my bleeding it has made no difference to the progression of my disease :(

Good luck with finding your own way forward.

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Hey, it’s true that endo doesn’t completely go away but has he talked to you about removing what is currently there?Also is your consultant from a bsge centre? I had my endo removed in May and though I still have adenomyosis (which can only be removed through hysterectomy) my symptoms are largely relieved.

In terms of coping, ask for an occupational health referral. They should be able to suggest reasonable adjustments to your management. I used to work flexi time which was a helpful way of managing stuff... I could build up in the weeks before and take the days off where I was tired or in pain without losing pay. I also did a casework driven job at the time.

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Just because you have had pain all this time doesn’t mean this will continue. My first lap was 2010 after years of pain and since then (until now unfortunately because I have a large cyst to remove), I have had very little pain! Since I changed my diet to much more clean less sugar and wheat, my periods aren’t half as heavy or painful. My periods were ridiculous, more blood than any pad or tampon could cope with and crippling pain since I was 13 to the point where I could barely pick up a biro. Soon as my diet slips my period and pain will be like the old days. You can help yourself with diet and regular light exercise. And good mental health, positivity. It seems my cysts have been bursting over the last 7 year’s so a couple times a year I will get horrific pain for around 20 mins, really the worst pain I’ve ever experienced then it feels like a burst and the next day I’d get choc blood. Apart from that I have been fine (symptom wise) and you might be too now that you’ve had your lap. I too thought it was the end of the world & what on earth does this mean for my future and career/promotions but managed carefully and things don’t necessarily have to change for you. I know many women who manage their endo with gluten, dairy and sugar free diets alone without any meds. Mine would definitely be managed the same if I had the will power to stick to it too. Your gyny May have cleaned you up and you can enjoy pain free period until the next flare. We are not all the same remember so reading how some women are in years of pain may not be the case for you Hun x

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To add, my sister has severe endoms with all bits and bobs stuck together (lovely) and has had a couple of laps and she has a caseload job as an advisor for a uni. She works full time and it doesn’t get in the way of her job or life as managed well. Same can be done for you I’m sure of it xx

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Hey x I hope you are getting over your lap ok.

I developed chronic fatigue badly after my diagnostic lap and compressed my week down to 4 X 8 hour days, which my work were very good about. They also let me WFH some of the time. It kind of helped but I became ill with stress and exhaustion 3 weeks before my major excision surgery. I am only just starting back on a 8 week phased rtw plan. I slept all afternoon Thursday after just 2 hours in the office.

I have no idea whether I will end up being able to cope with my previous work pattern and may ultimately have look into some kind of home run business where I can work at my own pace though that would be a massive pay drop.

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