How much endo pain to endure, keeping on trying to work?

Hiya, I have a strange question about endo I hope you can help me with.

I get to be one of the rare, lucky few with endo on my appendix (and colon, and other places too).

I went to see the out-of-hours GP because I wasn't coping with the pain. The GP kindly gave me a remedy pack with codeine, diclofenac, and senna. The plan is to try to reduce the pain until I can see my regular GP, and then consultant (at BSGE accredited endo centre -Yay!).

In my pain addled mind, I'm trying to think about work on Monday. I've been working from home and have an ergonomic chair (also, yay!).

But... Ummm.... Ouch, ouch, ouch! How to work with an imaginary siren going off in my body?

I think this is what's called a flare-up because it's so much worse today. Maybe I will be lucky, and it will subside overnight. But maybe, it will stay the same.

So... I've already taken off all of the time (this year) I'm allowed without a special bespoke negotiation.

Normally, when you're off sick, you're healing up to go back. But, I'm not in the mending phase. I'm in the getting worse phase. So, time off won't help me to get better.

Ummmm. I have never faced this before. I genuinely don't know what to do. I could sit at my work chair (ouch), and try my best to work, and pray video-conferences don't coincide with when I start losing it and having a sorry-for-me cry.

I guess I'll just have to see what the morning brings, but I don't have a plan. This isn't like a flu when you know not to go to work because you are using too much tissue. This is strange stuff. I could call into work sick for the day, but what could I possibly say? "I have unrelenting pain and I've lost my mind"? That's not exactly confidence-inspiring for an employer. I love my job. I don't want to risk it by being seen as unreliable. Geepers creepers!

Any words of wisdom? Advice most welcome. 🌿🌼🌿

[EndoJaz]

Hi can I possibly ask what the pain is like with endo on the appendix? I am staring to get a tight squeezing really painful pain on the right side and back just under where the ribs are. I am scared this is kidney or appendix endo. I have had surgeries but not sure they check these places. Hospital suspected appendicitis last Oct but sent home as was ok. I am self employed and have found this whole illness such hard going. I am fortunate to have people that cover me at short notice. Never been able to stay in jobs for long due to the pain. It’s so hard to get people to understand this when we don’t really ourselves. 😩 xx

[Hidden in reply to EndoJaz]

Hi Jaz,Endo on the appendix - let me think about how to describe that... Well, the appendix is on the right hand side of the abdomen, below the bellybutton.

If your GP does a pelvic exam, that involves pressing on different areas of the abdomen to find out what is sensitive. The GP does press a bit harder that you probably would yourself, to learn where the pain is focused.

I guess I would describe it as a sharp pain when it is pressed on during a pelvic exam.

The rest of the time (during a flare up), it's also a sharp pain, or maybe like a pointy pressing weight on it.

Endo on the appendix can "masquerade" as appendicitis, but real appendicitis usually comes with a fever and vomiting.

[plotments]

It's so hard trying to juggle endo flare ups while working. I was off work a number of times over the years with endo pains, although not diagnosed till later on it was difficult to explain why I was off sick so much. I ended up getting several warnings because of it!! I had to give up working two years ago, my body has gone into a permanent endo flare, and waiting for the NHS is taking forever!!Could you speak to someone in HR, maybe try working from home when things are really bad. Or getting a better chair in work.

[Hidden in reply to plotments]

Thank you Plotments,Yes, I can speak to HR. Fortunately, I have worked from home during lockdown and had an ergonomic chair. Work would likely be willing to give me some flexibility around that.

I'm just a bit stumped because when I went to the GP today, I had many moments where I could hear he was talking, but I was in too much pain to understand him. I had to ask him to repeat himself several times and to write down a few things for me. That was embarrassing and worrying.

Even with an ergonomic chair I may have a problem if I can't lead meetings because I can't understand people because of the level of pain.

Hopefully, this will pass, and become a non-issue. But it is very concerning.

[Moonglo]

Hallo! I think you’re kind of answering your own question, at least in the short term. If you’re in so much pain, can’t sit on the chair, and can’t think straight, are you capable of doing your job? Can you get a sick note from your GP? Unfortunately this might not just be for the one day...Longer term, I think you need to approach HR and, if you have this, Occupational Health. They have a duty of care to take your condition seriously and take reasonable steps to find ways to accommodate you.

I hope you find support soon!

[Hidden in reply to Moonglo]

Thanks Moonglo!Today, I've had "Scooby snacks" (diclofenac & codeine), and I'm actually getting some work done, remotely. It's not easy, and I'm in cookie-land, but I'm getting things done. I feel like each 30-minute block is a victory.

So, I guess this endo pain can be greater or less depending on if it's a flare-up or not, and how much pain medication I can have.

I've yet to try to think about what will count as "too sick" to work. I suppose simply when I malfunction seriously and stop making sense.

I think I saw the idea earlier of trying to do flexible hours... But I have limited energy, so if I malfunction, it's not as though I have a secret reserve of energy to make up the time.

This is a puzzle yet to crack. 🌿🌼🌿

[Moonglo in reply to Hidden]

Do you have an Occupational Health department to talk to? I’m just thinking ahead, in case you get a serious flare up and really need the time off - at the very least to keep them (and HR) in the loop.

I’ve been on the receiving end of some very unfair treatment (I couldn’t help being rushed to hospital for emergency surgery and taking 3 weeks off, and yet, somehow I was the one being persecuted).

At the very least, they’ll look at your case and ask you questions about your chronic illness, and should make suggestions suited to your personal circumstances. Flexible working is only one option, they’re the experts on what options are available.

[Hidden in reply to Moonglo]

Hi Moonglo, I'm sorry to hear you've had some unfair treatment with work when you're dealing with health issues. I'm unhappy "at" them on your behalf.

I'll try to communicate well with work about this. My boss & HR know I have endometriosis, but I have yet to agree something with my boss... He's nice and a good manager, so it should be ok to discuss the elements that affect working time.

I was going to try to discuss it with my boss yesterday, but I also had a first appointment with a gynaecologist consultant at a BSGE centre last night. So, I delayed the meeting with my boss to try to learn the scale of the issue from the consultant first.

So, I've had the appointment with the consultant now, and I'm reeling a bit from it. I'd just assumed that although my Endo is at stage IV, that it probably wasn't very bad... Like the lightest one that could be called stage IV I'm a stubborn optimist). But, no, it's severe endo, no question. Ugh.

So, now that I have a rough picture of the situation, I can arrange an appointment to discuss with my boss this week. I'm framing it as a "resourcing issue", focusing on the potential schedule and how it may play out for treatment. That will save us both the embarrassment of discussing "womens' problems". Nope, no women's health issues here... Just a generic disease that affects the calendar. 😉

Thanks for listening. 💚💚💚

This health-adventure is nuts!

[Moonglo in reply to Hidden]

Thanks! It was a long time ago, I’m still with the same company, my current manager is lovely and as a result of the problems I had, I pushed for going part time. I work 2 days a week at a rate that you wouldn’t find in any other job!

Anyway, back to you. I’m sorry to hear about your endo being severe. I get the impression you’re a very active (and proactive) person and this must be quite an adjustment, and indeed, a shock. I hope you start to get your physical resilience back in time.

It’s a good way to approach things with your manager, as they do respond to practicalities like resourcing. One word of caution, this chronic illness is very unpredictable. You could be fine one day, then the next you could get a flare up or severe fatigue (or both). So you might need to try and predict when this is likely - before your period? During? After? And factor that in with your resourcing conversation- with a big fat caveat that it’s purely guesswork. And if it gets too much for you to cope with, then have a back up plan, such as approaching Occupational Health x

[EmB18]

It is so tough to manage endo flares around work and sometimes you do just need to rest. Could you ask for flexible working and work shorter days in a flare and make the hours up when it eases? Or just stagger your hours so you can have more breaks even if it means you work a bit later?

[Bespp]

Hiya, does your employee knows that you have a chronic illness? I think you need a letter from GP to be put in your file if I recall correctly and they need to familiarise themselves how to support someone with w chronic illness. Only because is not cancer ( thankfully) it does not mean is as draining as and the hospital appt and what not.

Has you place of work got a plan that maybe they need to make you aware what is their procedures to support someone with chronic illness? Could be a communication breakdown where you dont know about it. Speaking from experience, I did not know till i asked.

Hope you get sorted