recovery from endo surgery - reassurance ... - Endometriosis UK

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recovery from endo surgery - reassurance if possible!

Mxc908 profile image
25 Replies

Hello, I am 16 days post laparoscopy with a high level of removal of endometriosis from “everywhere…all over the organs” (to quote my consultant!) with adhesions and also adenomyosis found. I’ve been really surprised about how tough the recovery has been. I’m still sore (although this has improved loads), including my abdomen hurting when I have a wee. I get absolutely shattered and I feel a bit weak and dizzy when I go for a walk (even round big shops). I suppose I’m just looking for some reassurance that other people have taken more than 2 weeks to bounce back? I’ve been signed off work until October 16th so I can have my debrief with my consultant on 12th and then go back. I think I’m just feeling frustrated and like I’m alone in how long it’s taking me to get better. Any words of wisdom or reassurance are so appreciated 😊

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Mxc908 profile image
Mxc908
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25 Replies
Kieraface profile image
Kieraface

Hey hey, I haven’t had my surgery yet but have been told I have stage 4 severe endo and adenomyosis. I’ve got my surgery on the 6th October (this Friday) and my axa nurse told me that recovery isn’t going to be a standard 2 weeks due to the severity. Everyone is different though. Listen to your body and if you’re not fit by the 16th then ask your gp to sign you off longer. Your health comes first: and it’s better to take more time to recover properly then push yourself to go back, then cause yourself harm and end up needing to start from square one again for recovery. Be kind to yourself xx

Mxc908 profile image
Mxc908 in reply to Kieraface

Hey, thanks so much for replying. It’s reassuring to hear that the nurse said with severe endo the recovery wouldn’t be a standard 2 weeks. I have been getting frustrated/panicky after having read some stories about people bouncing back super quickly!

You’re absolutely right about health coming first. I would give that advice to someone else, but it’s so hard to take your own advice isn’t it…!

Good luck with your surgery this week. If it’s any help, I didn’t suffer with severe pain afterwards- my thing has just been how long recovery has taken compared to what I had mistakenly thought (but then I went into the surgery not knowing where I stood so it’s great you know this already). Sending positive thoughts your way xxx

GraceFace profile image
GraceFace

Hi there, my first laparoscopy (I’ve had several) hit my like a ton of bricks. I’d say you’re well on your way to recovery. Try to take it slowly though, as overdoing it will make the pain worse. My laparoscopies have taken around 4-6 weeks to recover fully (GPs will tell you 2 weeks but it’s simply not true) x

Mxc908 profile image
Mxc908 in reply to GraceFace

This is so reassuring thank you! I just can’t imagine having gone back to work at the 2 week mark!! Xx

MooMoolo22 profile image
MooMoolo22

Hi, don’t worry, I was so shocked at how awful I felt after my first laparoscopy. I was shattered, everything toilet related seemed to stop working I was so sick and was off work for weeks. I think I was expecting too much and was too hard on myself so my advice is take it very slowly and try not to worry too much. Take care x

Mxc908 profile image
Mxc908 in reply to MooMoolo22

Yes, I think I have expected too much and I’ve only just started to adapt my expectations a few weeks in 🙈

Thanks for sharing your experience xxx

lizh87 profile image
lizh87

Hello. I am also 16 days into my recovery and I have experienced exactly the same as you. I felt ok sitting down and then when I stood and walked I was dizzy and weak so what you are feeling is normal. I have now also got my period, which is a lot more painful than I ever thought it would be after surgery so just look out for that when the time comes x

Mxc908 profile image
Mxc908 in reply to lizh87

Hope you’re feeling better each day! The dizziness took me by surprise so it’s reassuring that a few people have said they’ve had the same feelings. I’ve just had my period and it was a painful one but luckily only really painful for about 2 days. I took some of my leftover codeine - would definitely recommend if you have any! Take care xx

Sabrinacolada profile image
Sabrinacolada

Hi,

I am actually about 3 weeks post lap recovery myself. It can take over 4 to 6 weeks to heal ( dependant what was done). It is absolutely nothing to be worried about as you are still recovering/ healing.

At 2 weeks I was still having some pain, exhaustion and dizziness. But I can say it does get better each day. Now I have gradually increased activity ( have been building up how far I have been walking with short sits on benches between). I still can't heavy lift yet ( had bowel disc shave and an ovary/ fallopian tube removed)

I was lucky before discharge I had a very lovely physio who discussed general healing, exercises etc. Sorry it wouldn't let me attach it here scroll below for a sheet from physio with likely recovery times/ what can be done etc.

❤ sabrina xx

Missev profile image
Missev

Hello, I am 3 weeks post surgery too. I was told it would take about 6-8 weeks to recover as mine started as a key hole laparascopy surgery then turned into a laparotomy. But i remember my first laparascopy last year, that's how i felt and it took way more than 2 weeks to recover.

Take your time and listen to your body and if you require more time to recover request it from the gp.

Sabrinacolada profile image
Sabrinacolada

Just found this from the physio who spoke to me before discharged. Sorry its a tad crumpled/ blurry! Hope it helps xx

Recovery tracker guide
Mxc908 profile image
Mxc908 in reply to Sabrinacolada

Thank you! This is so helpful. I have been wondering about driving so it’s a relief to see it under the 4-6 weeks xxxx

Sabrinacolada profile image
Sabrinacolada in reply to Mxc908

I was told by one nurse when feel ready to emergency stop, no pain etc should be fine ( some clauses in car insurance dependant). Think will do some very small car rides around block later in the week to begin with.

Glad it helps . Know how you feel my first lap last year was just given a 2 week fit note from the surgeon and naively told my boss I'd be back after that. The recovery sheet I got this time is far more realistic. Also in terms of work it's a bit generic dependant on how physical your job is can vary. Highly suggest phased return when you do go back and building up X

Ylime90 profile image
Ylime90

I was also expecting to be better a couple of weeks later, but was definitely weak/tired/sore/constipated for a month, and then it took me a few weeks after that to build my stamina back up. I went on holiday 4 weeks after surgery and was absolutely exhausted by walking around cities, which normally I find easy and fun.

Listen to your body. The incisions on the outside are much smaller than the incisions on the inside.

Mxc908 profile image
Mxc908

Thanks everyone! I’m so relieved! I feel like the consultant and GP should better manage expectations so we don’t panic! I know it’s a massive spectrum because someone might have a diagnostic lap and bounce back quickly, but even when they told me I’d had loads done, they didn’t mention the impact on recovery time.

The reassurance about feeling weak and dizzy when walking has been really helpful because that’s taken me by surprise. I normally walk everywhere at a million miles an hour so that’s slowed me right down 😆

Sending lots of positive vibes and get wells to everyone who has recently had surgery xxxx

HT267 profile image
HT267

Hi Mxc908,

That 2 week advice is literally for people who have investigation but minimal treatment. If you've had adhesions and lots removed it's honestly going to take several months for you to feel more yourself. I had the standard advice too but had same as you a lot done and also have adenomyosis and I ended up being off work for 2 months and on a phased return for another month. Everyone is different but if you've had major surgery 2 weeks if recovery isn't going to be enough. Sending you healing vibes and put your feet up when you can take care xx

Avourneen profile image
Avourneen

I think doctors usually tell their patienets that they weill takea minimum of 6 weeks to get anywhere close to normal again. It take a bout a year to completely heal, having a lap just to look for endo is very different from having a big op with lots of excision. After a big op like this where you have loads of cutting around inside the operation is comprabable to a caesarian, no would expect you up and doing a jig after two weeks with that.

My surgeon told me it was important not to lift anything heavier than a kettle ful of water for 6 weeks and not to drive for 6 weeks. You may also have lost blood during the op, which can make you anemic and very tired. I had to take iron for three months to replace it after the op.

I think people mix up a diagnostic lap and a very big opeartion for extensive excision. Don't compare yourself with others, everyone's experience is different and it is totally normal to take a couple of months to recover not a couple of weeks. You are doing really well so just keep taking the pain killers and walk a little bit every day. YOu will get there you just needa bit more time. XXX

Endowarrior1807 profile image
Endowarrior1807

Hi

I had stage 4 endo removed and my consultant told me healing would take 4 - 6 months.

She told me not to go back to work for 4 months and at first I though it was a bit excessive but I’ve just hit 4 months now and found she was absolutely right.

Its been 4 months Ive been off work and I still get pain/bad fatigue so going to work still doesn’t seem feasible for me right now

Honestly it depends person to person and the more you had done during the surgery, the longer you will need

Kaita16 profile image
Kaita16

took 4 weeks until I felt reasonably normal and I was off work for 3 as I developed an infection in one of my sites and my operation was way less extensive that yours - 2 weeks is a load of crap that doctors say but it absolutely takes longer. Just lean into it and try to relax :)

Cocoacupid profile image
Cocoacupid

after my diagnostic lap I had fours weeks off as was in hospital with sepsis after so as other people say everybody’s body’s are different so some may heal quicker than others. I don’t know how I got sepsis but I did and I had done everything right by walking around a little not carring heavy things. But by day five I knew something was wrong as couldn’t get up out of bed and I felt like I had been hit by a bus. Thankfully I have recovered but I will need further surgery’s but am quite scared and this was only key hole. Just rest up and don’t beat yourself up because others have healed quicker. Yourll get there just rest and do little bits. Xx

Aug6Rose profile image
Aug6Rose

When I had a similar situation I had to take 3 months to recover. I had to have surgery in order to remove the grapefruit sized chocolate cyst and because I had also infection inside they stapled my 10 inch incision shut. It was awful-I was bloated, in pain, dizzy and so uncomfortable with my incision. Sorry you’re going through this. It does get better but you may need more recovery time.

Jodee25 profile image
Jodee25

Hi I'm 23 days post diagnostic laproscopy for endometriosis. I actually still am having trouble with my bowels even so more after the surgery & the back pain I have is literally like labour. Honestly I was not expecting this so I feel for you. I'm currently waiting to see a speashilaist. All I know is that I have big spots in my pouch of douglas. Lesions on both sides of my uterosacral ligaments and I had 3 nodules which one was taken to be tested. Still waiting on results. You are not alone but I feel exactly the same. No one understands unless there going through it. So hang on in there. X

Mxc908 profile image
Mxc908

thank you so much everyone for replying! It’s so nice to know that there are people out there experiencing the same things (not that I would want anyone to be ill but you know what I mean!).

Has anyone had extensive excision and had backache whilst recovering? That wasn’t something I had much of pre surgery but have really noticed it post surgery.

Thanks everyone, I so appreciate the responses. Xxx

Jodee25 profile image
Jodee25 in reply to Mxc908

I had excision and severe back ache after it was like being in labour honestly. I also had my whole privates ache for 2 weeks. I only had a diagnostic lap with abit of excision but was told after that I need to see a speashilaist as all couldn't be removed so now I'm thinking the worst. X

Kittie5117 profile image
Kittie5117

One of my colleagues is coming back after similar operation, she has been off for 6 weeks and is doing a phased return (a few days per week, building up gradually) - I don't know if this is something that you can request from your employer?

It sounds as though your operation would have been quite complex, so recovery time is going to take time, good luck and take care x x

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