Apologies if this all sounds a bit dramatic but I'm really struggling right now
I had a laparoscopy in September that finally diagnosed me with stage 3 endo after a particularly excruciating year where my symptoms ramped up VERY quickly to the point I was pretty much housebound.
I started a new job in that time (3 weeks before my surgery so not ideal) & I'm now returning to work.
But I'm struggling.
I'm still in a lot of pain, luckily I work from home but I still can't sit comfortably at my desk, and even with my laptop on my knee on the sofa I'm still sore. I can't concentrate, I can't stop crying. I think the burden of knowing I now have this awful lifelong illness is really setting in and I'm not sure I can mask it any more. On top of the pain, the brain fog and fatigue is absolutely crazy.
I don't know how I'm going to be able to keep working while I'm in so much pain. It's absolutely debilitating and I'm terrified. Realistically, I'm going to have to take more time off work but I've spent more time on the sick than I have actually working since I joined the company.
They've been amazing and really accommodating and I feel absolutely awful that I've put them in such a rubbish position but I feel like it isn't fair on them to keep stringing this out if I'm not going to be well enough to do my job.
My head is all over and I'm just not sure where to turn.
Do I leave my job and try and spend some time finding a pain-management plan that works? Currently painkillers do nothing (tramadol, codeine, methademic acid, naproxen, even cannabis - you name it, I've tried it).
Still just figuring out how to live life with this awful illness
Any advice much appreciated!
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JellyfishPud
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I am so sorry you are struggling, I have found that after the initial feelings of relief and validation from being diagnosed you get hit with the reality of it all. Are you under a BSGE accredited centre?
Although this disease seems at the moment to have very limited options available to help us at the moment, the BSGE centres seem to look at the whole picture of how this is effecting you're life. Would it be possible to be transferred to the BSGE centre, maybe by your G.P or any consultants you are under at your local hospital? Also would it be an option for you to have a private consultation?
I didn't even know about BSGE centres so thank you for flagging those! I have an appointment with my GP next week and a follow up from my lap surgery with the consultant a few weeks after that so will bring it up with them and see if I can access it. Thank you!
I totally understand as I had bad endo all my life struggled to work too. I was put on Zoladex injections and then Mirena coil to stop periods and it made a big difference. Crux of it all. Try to stop your periods. It was only while on Zoldaex and later had Mirena that I got some kind of life back. Hope this helps a bit. I’ve been there. Take care.
Working on that now - I’ve been off the pill since 2019 trying to conceive with no luck and was hesitant to go back on but given the current circumstances I’ve got no choice 😭 the pill did completely stop my periods while I was on it so hopefully it can give me some relief
Hello, really sorry to hear you are struggling to work and endo is impacting you both emotionally and physically. Your situation sounds similar to mine.
which hormonal medicine are you taking?
My gyanecologist had referred me to the chronic pelvic pain team at hospital. You might be able to go down this route?
Could you ask for an ergonomic assessment from occupational health? The NHS or your works might offer this. This might help find you equipment that can help you work more easily from home.
Alternatively, would you be able to drop your hours to part-time and apply for help such as personal independence payment?
Hope things get easier for you. Try not to worry about your work or feel bad, they sound really supportive and understanding Xx
I’m waiting for an appointment with my GP to arrange going back onto contraception- I’d been off the pill since 2019 to conceive so have been hesitant to go back on as a last resort but I don’t have any other choice now 😣
I’m due to have my surgery follow up appt with the gynaecologist in December & am going to request a referral to a pain clinic and a specialist endo clinic.
Sadly my role is at a small start up and there is a lot of pressure in terms of sales management so it isn’t really a position that would work part time, if anything I think it would just become more stressful knowing how much needs to be done & stress is one of my biggest triggers in terms of worsening symptoms so tbh, a change to a new role might not be the worst thing in the world.
Currently debating going freelance for a while so I can work my own hours and pick my own projects, but that in itself isn’t without stress.
It’s just a difficult situation all round, on top of simply trying to get my head around this life now 😣
I too have decided to change my career path based on my chronic illness. I can’t stand for too long otherwise I will have a huge glare and as someone who is a teacher i never get a second to sit down. The only thing I’ve found that helps me get through the day and makes me more comfortable is my TENS machine. Mine is from myoovie, it doesn’t stop the pain but hugely reduces it making it more comfortable for me and it’s discrete enough that I can wear it daily and no one knows.
I do have a discount code as well as they can be very pricey if you want to use it (JOSEPHINE94390). Could be something to invest in for the time being to see if it helps
I’m sorry you’ve had to change careers, it’s such a frustrating situation to be in 😣
I do have a TENS machine, but it only seems to briefly work when I have sharp/shooting flare ups and sadly doesn’t do much in terms of the day to day pain I experience 😣
Sorry you’re going through debilitating pain. I was in a similar position last year and had to go p/t at work. I had an appendectomy( endometriosis caused this & a large cyst on one overt of 9cms and an smaller one on the other ovary.) However I still struggle with debilitating fatigue every day.
I’m on my feet all day and struggle to do 28.5 hrs compressed into M-W & Th half day.
Perhaps speak to your GP about the naproxen as they can increase the amount as long as you take omeprazole with each dose. That worked for me on bad pain days.
Also, know your rights re’ work and sickness/time off permitted etc and make sure they give you ‘reasonable adjustments’ e.g ergonomic chair and desk (minimum required) Explore ‘flexibile working’ and ask your Union or CAB for support if needed. Use Occupational Health referrals wisely as they can make recommendations which support you staying in work/job.
Im so sorry youre going through this too. I’ve been in a very similar situation. Having worked full time my entire adult life, I recently got to the stage where it became too much. My last excision surgery left me in constant pain, I was also needing the toilet 40 times a day plus crippling fatigue. It just became too much so sadly had to stop.
I was ‘fortunate’ that my employer had ill health income protection policy as a ‘perk’ and that is now paying me 50% of my wage monthly.
There is support out there, UC or ESA and PIP too. Remember if your condition is effecting you significantly over half the time you should be entitled to some support.
It took me a lot to adjust to not working and get over the shame I felt. I even went to therapy and my therapist drummed it into me like my health has got to be my no1 priority. I’d always put my job first.
Feel free to message me anytime ❤️ best wishes to you ❤️
hello you can ask for an occupational health assessment through your work, explain your illness and how it affects your daily life and work life, they can make adjustments for you. Such as extra breaks, time off for appointments etc … I am covered by the Equality Act (have a read up online and it will make sense to you in relation to your work), as I have endo and adeno and other conditions and it has an impact on my life.
As you are not long diagnosed and struggling with it - can you ask your GP for counselling? I have had that and CBT. It’s hard to understand why and what’s going on in your own body and also the mental toll it has on you. I still have up and down days. I take each day as it comes now xx
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I don't know who I am anymore..
Feeling so guilty
Endometriosis, can't cope with work anymore!
I don't know what to do next! 
Can't be dealing with this anymore :(
