Looking for advice on Endometriosis and work

[NikNaxx]

My first post here but how do you guys cope working with this condition?

I had to leave my original workplace after my daughter was born as it would have cost us more in childcare than my entire months wages to work.

Since then I went through 3 years of hell. I suffered with numerous health issues, constantly being told everything was fine, nothing was wrong (which left me feeling i was going insane). Scans, thyroid tests, you name the test? I feel like I've taken it at this point.

Since having my first surgery and getting the diagnosis things have improved but now Covid is settling down I really want to get back into work to help my family but it's been barely a few weeks of trying and I'm already stressed, terrified and it feels impossible.

I don't know how I would manage a full time position with this pain, managers have threatened my positions for less time off (than my condition currently demands) in the past. I also need to find a job that is local, allows me to work around school times and is understanding of the condition. It feels so so so impossible and on days like today when the condition flares up, I can't even get my daughter to school without help and the housework goes ignored cus I've spent the entire day curled in a ball of pain? I feel useless. So so useless. I hate being such a burden on my family.

If there is any advice on how you all cope with working life while constantly suffering these constant contraction like pains, I will take it, anything at all to try and help at this point.

[charlatan]

I'm so sorry to hear about your situation and believe me, I've been in the same boat. I've lost 2 jobs because I've had to call in sick so much. Can't really blame them to be honest. Just looking for something part-time and local that involves minimum movement and stress.

Anyway - in my experience, I've found a few things that might help. Diet is really important but hard to stick to. Cut out all meat. Oily fish is okay twice as week as long as it's wild. No wheat, sugar, processed foods, alcohol or caffeine (except for green tea - this is good for pain and mood.) I guarantee that the lower your blood sugars are, the less the pain will be (most days.)

Also recommend turmeric as a supplement - great anti-inflammatory properties.

CBD oil is also really good but you need to experiment with the dosage - it will make you sleepy and dopey. First time I took it, passed out on the sofa for hours.

I'm guessing you're on pain meds but if you're not already taking it, ask for amitriptyline. Worked wonders for me.

Hope this helps x

[NikNaxx in reply to charlatan]

Thank you so much for the reply! I'll definitely try some of the things you suggested. I'm not currently receiving any medication, benefits or assistance for the condition. I had a laparoscopy to diagnose the condition in 2020, they fitted a coil at the same time and that was it. Standard ibuprofen/paracetamol is doing nothing to help either and it's just getting worse again.

After a full day of being battered my stomach is so swollen and tender to the touch I can barely move so if Turmeric helps with the inflammation in particular I'll definitely look into it.

A few people in work environments have gotten annoyed and said I "Should be on benefits if it's that bad." and the lack of understanding or empathy just feels awful. I'm used to being independent. I don't want to resort to that....but some days the world does a good job making you feel worthless I guess haha

[Cailleach in reply to NikNaxx]

I think maybe you need to get medical help for the endo pain before you look for a job, if you can manage financially at the moment.

Your GP can give you pain killers that might work better, but it sounds as if you need a referral back to Gynae, ask to be referred to some one with a special interest in endo, They have given you the Mirena coil and if you don’t tell them otherwise they will be assuming all is well, when it clearly isn’t.

Don’t feel a burden, you didn’t choose to have this illness and it sounds like you are doing all you can at the moment.

[charlatan in reply to NikNaxx]

Been there, believe me. It's not like we have any control over it. People just don't get it at all. If they spent a day experiencing endo, I guarantee they'd shut their mouths.

I recently applied for PIP as am rather limited work-wise. My claim has been rejected but I'm appealing it. Unbelievable. Can't make it out of bed some days and need to be waited on hand and foot by my incredibly understanding fella but apparently I'm fit and able. I was beyond offended.

[MalachiteAli]

When you have your PIP appeal, keep in mind that you need to be speaking about your abilities on your worst day. It doesn't matter if much of the time you can do stuff because actually what's more important is that some of the time you can't and need support. If you describe the days you are able to do things the assessor will assess you as fit and able.

Like cailleach said, I would wait til you have had treatment before getting a job. Do some volunteering instead. It's really difficult managing regular sick leave.

If you do decide to look for work speak to job centre about getting a disability adviser. Once you get a job, let them know you have endo straight away (though you don't have to disclose during application process as that might cause bias/discrimination, but if you want to screen out arsehole employers it might help to disclose right away). I disclosed to occupational health after I got my most recent job, my manager complained to me that I should have told her first, but I ignored her.

I also spoke to occupational health about reasonable adjustments as endometriosis could qualify as a disability in law (not sure it's been tested in court or employment tribunal yet). Now my sick leave doesn't trigger escalation and my hours are pretty flexible. I've just requested compressed hours so I'd be in 4 long days instead of 5 normal days, but if this level of pain continues I may have to go to part time or give up work altogether which would be very difficult as I'm the main earner and pay the mortgage.