Endo and work

[hls123]

Hi! new to the forum here. I was diagnosed with PCOS in 2015, Endo this June, interstitial cystitis this March and a damaged bladder. I am in constant pain and quite often it gets crippling and unbearable. Some days I can't even get out of bed to make a cup of tea which has started to have a big impact on my mental health and employment. I seem to be off work every 2 weeks for a few days and then go back to work when I'm able to move around again. I often miss out on meeting with friends and family and often unable to plan to go shopping or go on trips because we're unsure on whether I will be in extreme pain. I've previously been on pregabalin and I am currently on gabapentin and tramadol, including oral morphine when the pain is completely unbearable. I seem to be coming to my wits end and feel awful for my fiancé who is working hard every day to pay for all the bills and mortgage. Is there any financial help out there for people with these conditions who are unable to work every day and has anyone been through this as well?

[SLT82]

I'm really sorry you're having such a tough time. I have severe symptoms, awaiting surgery to determine if it is endometriosis although originally diagnosed with PCOS in 2013, and suspected chronic fatigue - I also had just had surgery on my kidney to remove a benign tumour. I've had to take a few days off this year, I've otherwise been fortunate that extreme times fall at the weekend and this year I've been working from home since March because of Covid, I also work flexi so can manage my work, get up and away from the computer to lie down when needed. Prior to Covid I had been sacrificing my social life over work, and don't even mention a chance of dating. Everyone deals with it differently though. I had previously been prescribed tramadol which helped with energy levels but had been encouraged to quit due to how damaging it can be to the kidneys, I had been prescribed them for six years prior to this though, have only been prescribed co-codamol since which helps with pain but I'm drowsy all the time. Have you been offered an occupational health review at work? They can seem intimidating but can be worthwhile as they can offer workplace adjustments, but how much this could help would depend on the work you do, if you're on your feet all day I could imagine how impossible this would be. If you're desk/office based would homeworking be an option? Is there a recognised trade union at your workplace? They could help. Or a workplace assistance programme?

[hls123 in reply to SLT82]

I'm so sorry you've had to go through that and really hope you're feeling better! Thank you so much for your advice I'm going to inquire about the occupational therapist.