Endometriosis excision surgery - time off as a self-employed person

[Londonwriter]

I'm having private endometriosis removal surgery on 1st April as my ovaries are tethered together and attached to my bowel. So, I'm expecting bowel shaving, excision of deep endometriosis and my ovaries to be separated and resituated.

I have an inflammatory disorder, which is exacerbated by the endometriosis, and I'm - obviously - also in constant low-grade pain due to parts of my abdomen being glued together.

I've been told to be in hospital for two nights, and to expect to be signed off for 4-6 weeks. This seems excessive, as I went to a Zumba class three weeks after an elective c-section, and I work with low-grade pain and exhaustion most of the time. I don't earn anything if I don't work, so I work all the time I can - even lying in bed during a D&V bug that my kids brought home from school.

Does anyone have experience with being self-employed or zero hours in a desk job after major endo surgery? When were you able to physically work (e.g. propped up in bed with a laptop)? I need to give my clients a realistic view of when I can return to work.

Sorry that this might sound really hardcore or insane to people with PAYE jobs. Please respect my life choices.

I am on a waiting list for the same surgery, bowel endo, pouch of douglas obliteration removed, unsticking ovary-bowel adhesions etc, and I have been told - by two separate consultants - that it will be 6 weeks-3 months' recovery.

Sorry - posted too soon! I was going to say - I imagine you will be able to work from your laptop in bed much sooner than that. But you will be tired, so perhaps not full days. I think four weeks will be a good call.

Have they said anything about a potential bowel resection/bag or are they confident it can be done via shaving?

I have to consent to possible bag/resection, but - from the MRI they did - they don't see any sign it's actually penetrated the bowel. So, he's expecting that shaving is the most likely outcome.

I was asking about working from laptop in bed because I can't consistently work full-time now. I tend to get flares of my inflammatory disease around my period (and when I get viruses from my kids) and those leave me in bed exhausted for an hour or so every day when it's happening.

Perversely, I'm hoping removing the inflammatory rubbish from my abdomen will improve my energy levels.

That's good news. Yes I know what you mean about being intrigued as to the effects on energy afterwards.

Have you had a diagnostic laparoscopy? With mine it took me about 1.5 weeks to be able to stand up straight and not be in any pain. I was very bloated and needed lots of help getting up and down (the sofa, bed, the loo). I'm two weeks in now and feeling very tired still. And the incisions are taking surprisingly long to heal.

Of course that's without any actual removal having taken place, I am sure if everything had been cleaned out and put back together I'd be much more sore! I would caution against over-exerting yourself too quickly. That said, working from your laptop will be easier than having to go out and about, driving, carrying things etc.

Do you mind me asking how much the surgery is costing you and how long you've had to wait for it? I should find out next week what the NHS wait will be for me. But I am TTC and the wrong side of 40 so every month counts...

Best of luck

I didn't have a diagnostic laparoscopy. I was referred to an oncologist due to persistent cysts following a (botched) IVF egg collection, and the MRI found extensive endometriosis.

He was going to give me a laproscopy but, once I realised the endo was attached to my bowel, I realised I'd be looking at two separate surgeries because I'd need a colorectal surgeon to tackle the bowel endo.

I'm not sure about the cost of the surgery because everything is being dealt with by my husband's work health insurance, but we've spent about £5k on insurance on MRIs so far (one looking for cancer and the other looking for endo).

I'm also doing the surgery to aid with fertility. I have two children, but I've only been pregnant twice in a decade of trying (I'm now 43). It's now obvious endometriosis has been a factor, so I'm hoping removing the endo and getting experimental meds for my inflammatory disease will help me conceive a third without a further round of IVF.

It's hard to tell as there are a lot of unknowns around how you'll feel.

Have you had a GA before? That might help guide you a bit. For me the worst part of any surgery has been the GA and it makes me very sleepy for a good few days after.

If you're looking to manage client expectations I'd be tempted to say longer than you think. It's always better from the client POV if you are back earlier than if you have to push your return back.

Recovering from section was easier than my hysterectomy (because of endo it turns out). I think if I was pushed I could have worked from week 3. As it was I had 4 weeks off, tbh if I'd had any more full sick pay I would have had more time off.

So, the difference between a c section and endo excision in terms of pain is about location being small cuts everywhere rather than one big one. Standing up the morning after my c section I apparently said “oh that’s much easier to deal with” and my husband chuckled but the midwives were shocked.

I’d say the first week is a write off and after that you’d be ok on a laptop but factor in naps and slow walks. Mind you I hit the tramadol/ diclofenac on my first excision surgery (4hrs) but coped with cocodamol on my third.

@Twizbe I only had GA as a kid with appendicitis, and it's hard to tell because it was many years ago and an emergency open surgery. My husband had GA for a hand surgery and thinks days of recovery time from GA alone is over-egging it.

I'm completely intolerant of morphine and had the absolute bare minimum during my section, and refused it afterwards. So, I'm going to try to power through with minimal pain relief in the hope it reduces the exhaustion (cross fingers). I've done two IVF egg collections (one with 12 eggs) on local anaesthetic, so I'm hoping that works out...

Drink a shitload of water while you still have the catheter in, it really helps, but you’ll need to tone it down as soon as it’s out again as the getting around is a hassle.

Don’t go too minimal on the pain relief though, it’s a tough op.

@Makegoodchoices Oh, okay, ouch (re: multiple cuts). I didn't use codeine at all, after my section - just OTC painkillers.

I've had to use dihydrocodeine to sleep when I had three large ovarian cysts simultaneously, however, because I had LITERALLY nowhere comfortable to sleep - it was okay during the day though.

Apparently, my pain threshold is a bit weird though...

@Makegoodchoices Genuinely, I spent about four years of my life with such bad inflammatory pain in my joints/muscles that I only slept three hours a night, and was exhausted for large parts of each day. I feel like I've spent years of my life lying in bed when I could be doing something more interesting!

So, I'd rather be in pain now than asleep when I don't need to be ;0)

It's so dependent isn't it. I know people who've sailed through a general (my dad) and then there's me who kept suddenly going to 'sleep' for days. I did it at a dinner table once and just slumped forward. I was aware of what had happened and could hear everything as well. It's funny now.

In theory you should be able to work in bed on a laptop the next day. But like I say you might want to set expectations that you'll be away longer just in case.

It sounds like you are really used to living life with pain and fatigue anyway so your threshold will be very different to a lot of people's. I wonder if saying you'll be off totally for a week and then trying to start doing say a couple of hours a day from bed, can you plan things flexibly so if it's a really bad day you can just not work or do you need a very solid plan?

I had 2 weeks off after similar surgery - stage 4, including rectal shaving and partial bladder resection and stripping off both ureters. I probably could have gone back after 10 days but I work for the nhs so get full pay when off sick.

I'd have been fine to work from home after a few days.

I had a lap hysterectomy a couple of year back and was able to work from home after a few days and was back to work after 2 weeks.

@Woolandwonder @welshweasel Thank you both :) I was hoping to get replies like this as, when I heard 4-6 weeks, I was terrified 😮

I couldn't imagine a surgery with a 4-6 week recovery time off work, including needing tramadol, that had a better outcome than living with my Stage 3/4 endo. I was like 'this must be as painful as being 8cm dilated with no pain relief while simultaneously stung on the abdomen by bees while, at the same time, being as tired as when I had the three months of post-viral fatigue that triggered my inflammatory disorder' 😮

It just didn't seem to match the reality of having excision surgery (i.e. little bits cut out), which I'd expect to leaving sharp knifing pains around the little incision cuts with soreness/tenderness through the rest of the abdomen. Which, after the initial disruption of surgery, is pretty liveable with...

@Twizbe I'll watch out for the sudden unexpected paralysis. That sounds pretty terrifying, actually 😧

I think if I'd been driving it would have been very scary. Thankfully I gave myself a lot of time before driving again after both (not least because one was a leg operation lol)

I had similar but no bowel involvement. It was stuck to bladder, so overall not as bad as yours. I think i had two weeks off I know it was more than 7 days because I couldnt self certify. I left the hospital with a completed sick note. I could have done things with a laptop at home after a few days, but that wasnt an option for my job. Only the first 24-48 hours were rubbish to be honest.

I think they always say 4-6 weeks for surgergy as thats when the risk of infection passes.

I am tough as nails but my second endometriosis surgery (5 hours in surgery) floored me. I had a bowel shave, ovaries untethered, ureterolysis and other bits cut out. Like others I had a c-section later on and I remember laying there that night with my baby thinking “oh this is a bit like a laparoscopy but not as bad”.

I have a desk job and I think you could probably consider doing some work after a week. The GA absolutely knocks you around so that’s the first hurdle to overcome. I needed 3 weeks off work but that factored in the commute.

www.argos.co.uk/product/8039451

I really struggled to sit up in bed that first week and found it most comfortable propped on pillows with this in front of me. I’d recommend getting something similar if possible.

Remember they’ve basically trimmed off bits of your organs whilst bashing around your insides with scissors and a camera each on the end of a golf stick! It’s actually a pretty brutal surgery to watch.

@Porridgeislife Thanks for the recommendation for the laptop tray 😍 I remember having problems physically sitting up with the c-section, but it was mostly that my abdominal muscles were 'missing' and I was terrified of tearing the wound open - I don't know how much that applies to endo surgery as being pregnant obviously stretches all your abdominal muscles, and there isn't a huge gaping wound left under an enormous hanging flap of skin either (I still have the enormous flap of skin).

The main thing I remember about the c-section was, first, the agonising shoulder tip pain when I hadn't slept properly for two nights already due to worries over reduced baby movement (which was why I had an urgent c-section). And, also, hobbling to the lift at 3am and again at 6am to go down to the NICU/SCBU to breastfeed because my DS2 had a glucose crash shortly after birth 😰(he's fine now, thankfully) 😍

I think the shoulder tip pain may revisit you as they pump you up with gas. No flaps of skin or gaping wounds though.

In an ideal world I would have done a week of nothing.
My ex left for a vacation the next day though and we have a sn son. The exhuastion was unbearable for me.
I also cried a lot becuase of my infertility so to be fair I was a hot mess.
The sleepiness was the worst part though once the gas pain ended.
Heated microwave beanbag shoulder wraps were a huge help for that.
My first surgery I was 28 and it was ok. Last I was 38 and my body strugged to recover.

@Josette77 How long did you have the total exhaustion for? I can cope with the pain of my current illness, but the week or so each month where I have post-flu-like exhaustion is REALLY hard to work through - even if I take caffeine pills.

[I'm obviously hoping removing the endometriosis will reduce my post-period fatigue, but I'm now worried the surgery will leave me tired for weeks/months, and then - if the endometriosis comes back in a year or so - I've just wasted a bunch of time and lost income having it treated, for nothing].

@Spendonsend I'm expecting that. It lasted about 4-5 hours last time, but it was just in the middle of the night, and after I'd already been awake 36 hours and had a premature newborn in SCBU - which was, in total, just temporarily rubbish for my mental health.

I was exzhausted for around a month. I was very anemic as well