Pre and post op - sharing my experience - Endometriosis UK

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Pre and post op - sharing my experience

noodles profile image
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Hiya

I thought it might be good therapy, and also (hopefully) useful for others if I kept a bit of a blog about my first endo lap. I'm going in for day surgery tomorrow at 11am, fingers crossed I can come home but I'm going prepared as I tend to not tolerate anaethetics and strong pain killers very well, so they might keep me in. I have pcos in addition to the endo, which is very much suspected but this will be the first lap I've had to totally diagnose. I had a laparotomy 20 years ago for a dermoid cyst on my right ovary, and don't have much of that one left as a consequence. I now have 3 large cysts on my left ovary causing me massive amounts of ad hoc pain that is getting more and more frequent - today in particular, I'm sure they know about tomorrow cause they are giving me some serious gyp! Tomorrow as well as the lap to drain the cysts (they are draining rather than removing to hopefully preserve a degree of fertility) the plan is to remove any endo found. I'm also having a hysterscopy with tubal patency checked out too.

I've been quite apprenhensive up to now, my date was brought forward 2 weeks so I have felt quite unprepared. But now I'm very much looking forward to having it done, and I hope, getting an end to this pain. I realise it's going to be painful still for some time post op, but to finally find out what's going on in there, and having a way forward is quite a relief. I've got support and also quiet times when I'll just be able to sleep lots, so I'm hoping that by Christmas, I'll feel like joining in a bit with the festivities.

Anyhow, my intention is to keep updating as I'm going along, probably won't be til after the weekend at the earliest I expect, but I do hope to post episode 2 very soon! x

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LadyA profile image
LadyA

How long did you have to wait for your lap? I was told i needed one ASAP, but they docs 'forgot' to put me on the list, and waited 2 months then thought something was up, so when i saw my gynea i asked, and she said i wasnt on the list, ivve now been put on the urgent list but im still waiting, and ringing everyday to see when i can have it done as ive been suffering for 6 years now. the pains getting worse and to add to it i have prolapsed hemoriges which are painful! Just hope i can have everything done soon! Goodluck for you surgery! and hope everything is better after wards xx

noodles profile image
noodles

Hi all

To answer LadyA to start with - I was referred in June, saw the consultant in September and had the op last Friday, so not that long at all, but that's probably because of the cysts maybe?

Well I ended up staying overnight, as suspected! The procedure didn't go very well at all, they had trouble with access apparently, and I can well believe that judging by the bruises I have left behind. I was first on the afternoon list, and was still in surgery almost 3 hours after they started - so big apologies to anyone who was after me that had to wait even longer. They did a number of procedures on me and were very thorough in checking round for endometriosis, which, apparently, they didn't find any of, despite having the endometriod cysts. There were only 2 of these remaining, as the third had resolved itself. These were drained and peeled rather than being removed as the chances of damaging my ovary were too high just to remove them. There is a chance they may refill, but it's one I'm willing to take just now until I can get my head around the rest of the stuff they found. I did have a lot of adhesions, which they've removed, so that could go some way towards explaining the pain, along with the cysts. I definitely have no ovarian tissue remaining on my right side, but my uterus is in good shape with no lining issues. I do however, had numerous small fibroids, not of any size to cause problems yet, but they are definitely something that will cause issue in the future, so I don't see it being too many years til they tell me a hysterectomy would be the best way forward. Despite my age, I would still like the opportunity to become a mum before that happens, but the biggest blow of all came with this surgery - both my fallopian tubes are convoluted, and there is nothing that can be done about it, both sides failed to show a route through for the dye test, and so I'm left with just one option - IVF. I always said that if that was all I had, then I would accept that it was never meant to be, but now I'm faced with it actually being a reality, I don't know what to think.

All is very raw, very new, and to be totally honest, given that I spent the night in a gynae oncology ward cause of bed space, I just feel very grateful right now that I'm not facing what the other ladies in there are facing right now. I'll give it some time and see how it feels going foward.

noodles profile image
noodles

I've not managed to update for a while, that's cause I've been rather poorly. I expected to feel rough for a while given the issues they had performing the procedure, but I just wasn't getting any better. Took myself off to the nurse on 15th December as the main wound started to weep and was rock hard, red and hot to one side - the start of an infection I thought. The nurse said all was ok, nothing to worry about and I was healing fine. It went downhill from there, and on 20th December I woke with a fever temperature and my entire belly was red and hot. I got an appointment to see a different nurse, straight away she prescribed antibiotics as I very clearly had an infection - funny how I knew that the week before but you put your faith in the health professionals knowing better! That will be absolutely the last time I don't listen to myself though!

The following day the wound started to weep, which was fine and relieved a little of the pressure from the swelling. My skin was so sore and tender I couldn't touch it, and was unable to stand up straight or move without pain. 2 days later, there was so much coming out that I was soaking through a dressing in under an hour. I managed to get through Chirstmas Day, not quite sure how cause I felt rubbish, but by Boxing Day I had to admit defeat and called up to get an appointment with the emergency docs. Bless him, he took one look at my belly and packed me straight off to a&e! So, after a few hours of waiting to be seen, I was admitted to hospital and put on IV antibiotics.

I was allowed out yesterday, as the combination of 2 stronger antibiotics was starting to work and the redness and swelling reducing. I have a huge line over my belly where the edge of the infection was when I went in so they could monitor it - several showers and a bath later and it's still there, so I'll have a lasting reminder for a good while longer! They took my stitches out in hospital too, they were supposed to disolve but they hadn't done - the ones in the main wound were really adding to the pain of moving, which I hadn't realised until they were removed, what a relief it was to have them out. The weeping stopped with the first lot of antibiotics, but all my skin around the wound had blistered and peeled - what a mess from what was meant to be a straightforward procedure!

I've now got a further 7 days of 2 types of antibiotics to take orally, have to go back to the hospital on Monday for a check up and will be another 2 weeks off work at least. I still feel a bit rubbish and can't go through a day without having a nap. If I go back to work after the extra 2 weeks, then that'll be over 5 weeks off, a bit more than they suggested to start with! The only good news in all of this for me, is that the infection I have is an "inside out" infection - something inside of me that has caused the upset, rather than an "outside in" one - where I may have caused it myself by not being thorough enough when caring for my wounds. That really bothered me cause I'd been so very careful in keeping things clean, so in an odd way, I was pleased to know there was nothing I could have done differently to stop it happening. I'm entirely wiped out though, and carrying an additional half a stone to boot, while some of that will be the additional fluid from the infection, there's certainly a good deal of it that's just from sitting about being inactive for 3 weeks!

heaventherapy profile image
heaventherapy

How are things with you now noodles?

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