Recovery : Hi my first time posting on here... - Endometriosis UK

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Recovery

Puddx profile image
11 Replies

Hi my first time posting on here after joining a few months ago. It's been really informative of what I was possibly up against.

After years of awful symptoms which got worse month by month I had my first laporoscopy 7 days ago. When I woke up I had been diaognosed with stage 4 endometriosis and had spent 4 and half hours in surgery, they excised it all away. It was on both ovarys, majority of my pelvic wall and uterosacral ligaments.

My question is its day 7 and I'm still in an awful amount of pain. I felt better 4 days post op (might of over done it) but now I feel like I'm back to square one. I'm having trouble going to the toilet also as I cannot strain at all. I'm on stool softener but it isn't really helping.

Has anyone had a complex surgery like this and how long did it roughly take to recover? Not fully but enough to move around without being in alot of pain.

I have 2 children and I'm unable to do anything without making myself feel ill due to pain. I feel so guilty.

I'm starting to regret having this surgery done even though I really needed it due to how bad my symptoms were.

Please tell me there's light at the end of this tunnel.

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Puddx
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11 Replies

Did you have this carried out at a bsge specialist centre?

Puddx profile image
Puddx in reply to

I had this carried out by a gynaecology consultant within the NHS but he is specialised in endometriosis. He is amazing. I can't fault him and his team. I'm just struggling with the recovery as I didn't expect it to be such a complicated one.

in reply to Puddx

was it at somewhere on this list? bsge.org.uk/centre/ (Lots of gynaecologists describe themselves as endo specialists when they're not really.) Am I also right in thinking this was your first surgery?

Puddx profile image
Puddx in reply to

No he isn't on that list but I researched into my consultant before hand as I was quite apprehensive about the surgery. He is 100% an endo specialist.

Yes this was my first surgery, endometriosis runs in my family so I kind of knew I had it but not to the extent. 4 and half hours in surgery is quite a big operation.

I just feel like I'm not improving. Is that normal?

Thankyou for replying

Puddx profile image
Puddx in reply to

He also thoroughly examined my bowel for endo but there were no signs. However I'm constipated and having to take laxatives as I can't strain. I had my first bowel movement 6 days post op which was horrendous. Will this eventually get better?

in reply to Puddx

If you have severe/stage 4 disease, it is supposed to be treated at a centre on that list.

I assume you're taking decent pain relief? If what you have isn't enough please ring the hospital and tell them you are struggling. You can also go to A&E if you need to. Are you using Movicol? I had extensive excision 8 weeks ago and the pain with my bowels in the first few weeks was very difficult. It has improved but it took about a month, and things are still hit and miss in that department.

Puddx profile image
Puddx in reply to

Nothing has been mentioned about being treated at one of those centers. Cardiff is the closest one to me. I don't think they had an idea of how bad it was as I was scheduled for day surgery but obviously ended up staying in for a few days. I won't get to see my consultant for 3 months now either? I have so many questions to ask. Do you think I should mention them centers?

I've stopped taking tramadol now and ive been taking 2 30/500 cocodamol every 6 hours which I think has contributed to my constipation. Im still in alot of pain once ive taken them but just seem to be sleeping all the time. They make me feel so tierd and disorientated.

They started me on laxido 3 times a day but hasn't done anything so I took laxatives the last 2 nights which has worked but obviously not nice or gentle on the bowel causing me to feel unwell.

It's never ending!

Bexstar74 profile image
Bexstar74 in reply to Puddx

You're not alone there with this list of BSGE centres. Not one single consultant or doctor I saw said this to me either when I had my lap surgery so please don't panic. You're out the other side of the surgery but it may be worth calling the consultant to talk to them or get to your GP to see if they can give you anything else to help ease things up. Try eating lots of fruit, that might help somewhat. I found peppermint oil capsules amazing for the trapped wind in my shoulders. Big hugs x

fern123 profile image
fern123

hi I had a big surgery just like yours and to be honest I don't think I relized just how much work they had done inside me and this obviously makes recovery a lot slower. I took lax for 2 weeks solid and eventually they did help as your body starts to recover, but I deff underestimated how long recovery would take as even after 4 weeks I still needed a napp in afternoons even after not doing much. You must give your body time to heal as this is a big surgery. it was approx. 8 weeks until I felt fit enough to return to work an even then I was really tied every night and just went home to bed but it does get better, someone suggested buying a heated blanket which really helped when just sitting a round, the heat from it seemed to ease paid. Take care and I hope you feel better soon.

Tillyfloss profile image
Tillyfloss

morning how are you feeling today?

the best advice I was given was to give my body the time to heal now than paying for it later if you need 6 to 8 weeks of taking it easy it's not the end of the world and you can pick things up later. As far as children go we are blessed with the very energetic 5 year old, my surgery wasn't planned but friends and family rallied around and for the 10 days I was in hospital and the first two weeks home she had offers for play dates etc so I wasn't over doing it and when I was rushed back in 4 weeks ago the same again, I'm very independent but it asking for help is a must so you don't overdo it. I was also told that having a general anesthetic can make you feel tired for up to 8 weeks after surgery depending on how long you were under for.

the specialist I saw at the bsge centre advised me not to take codeine, zapain or codamol as it aggravates the bowel ( I do have endometriosis on / in it) and instead to take paracetamol, tramadol, annityine and buscopan which has relieved the bowel symptoms a lot. Also try eating food that has natural anti inflammatory qualitys.

your only a week after surgery, please don't feel guilty about needing to rest and depending on the age of your children they can help, lunch boxes are a joint effort now and putting clothes away and helping to tidy up have carried on and well praised as I'm waiting for another surgery which is going to be worse than the first so the habit formed is going to make that easier.

take your time, sit out in the sunshine and don't overdo it!!

xx

Puddx profile image
Puddx in reply to Tillyfloss

Sorry I'm only now replying. I managed to rest and I felt much better after around 2 weeks. My bowels were the hardest to deal with post op. I had trapped wind so managed to get some medication for it and it worked wonders! I'm 3 and half weeks post op and I feel like a completely different person. No pain at all, all my symptoms have gone. I'm still very tierd but I'm pretty much back to normal. Thankyou so much for taking time to reply back to me.

Hope you are well xx

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