S.Wales here, I suppose it depends which hospital you had treatment in for instance if I had laps in Neath I got told after waken up, in Bridgend I got told when waking up then with a follow up several weeks later, Cardiff Spire I was told after waking up then a letter in the post and Cardiff main hospital will my first op there in June.
What?! They still haven’t told you if they found endo? It must be driving you crazy! The surgeon should come round shortly after surgery once you’ve woken up enough to understand and tell you straight away what they found? Then a follow up letter with all the details. This has been the case for me both private and NHS. I’m shocked - this must be a mistake - call the surgeon’s secretary and say they didn’t see you after theatre and you still don’t know what was done to you. This is appalling! X
Also they’ve always told my parents and partner (with permission) whilst I was still in recovery what was found, so I could be told immediately by my family. Definitely doesn’t sound right x
He came around to see me within 5 minutes of waking up. I have no idea or recollection of what he said, and I wasnt allowed any family with me.
Once I came back to my senses and could think i asked the nurse if he has written down what he tried to tell me and there was nothing and I was let out. I emailed my surgeon directly a few weeks later and explained that I was not at all with it to know what he said.... no responce!!
Im just in constant tears of not knowing anything. And now I have over another month to get any insight
Oh poor you that’s awful - he should have seen you were too groggy to understand. I would definitely call the secretary and say can he at least let them know if endo was found or not so they can communicate it to you. Also you could try ringing your gp as the surgeon usually writes to them too to keep them in the loop, so they may have some further info. Good luck - keep us posted. Even if the secretary could get a normal doctor to read your notes and call you that would be something? It will be written down somewhere what he found. X
It’s not nagging to try and get a straight yes or no answer if they’ve surgically removed anything from your body and not told you! Or told you when you were still out of it! Plus I’m sure the secretaries are used to it - I’m currently cringing at texting and calling my surgeon’s PA every day as I’m waiting for certain bits of info about my next operation and it’s not very forthcoming!! So I do understand but you really must be firm on this one - I don’t know how you’ve coped as long as you have done to be honest, I would have gone crazy by now!! X
Sorry you didn’t get an answer yesterday, being realistic it will be Monday now but it sounds like progress has been made. And if it gets to about 3pm on Monday and no one has called ring them back. Also why were you not allowed family or a friend with you? That again sounds horrible and unfair I’ve always had both parents and my partner waiting for me once I was out of recovery. Sounds like you’ve been very unlucky with this experience just try and stay positive and think that hopefully they removed something and you are on your way to feeling better. Have your symptoms gone away? If so isn’t it likely they removed something? Once I’ve recovered from surgery I always feel like doing cartwheels once the endo has been cleared out so if you’ve noticed an improvement that may give you a clue? I don’t know, that’s just how my body reacts :S xx
My symptoms....I am still very swollen from the lap causing alot alot alot of discomfort. My doctor said its still all the gas.
Today mt belly button is pussing green stuff (I already had infection 2 weeks after the lap and took antibiotics)
But as for the endo pain im not sure if its gone because im still having so much post op trouble. No I dodnt have anyone. First time I was allowed to see my mum was when she was getting me into the car x
Hiya oh dear I’m sorry to hear all of this. If you think a surgical wound is infected and producing pus you must go and see the gp on Monday! It can vary how long it takes your tummy to go down - I looked pregnant for weeks after my first lap but the last time it went down in a couple of days. But I wasn’t in pain for longer than a week but I’ve only ever had superficial lesions. No cysts etc. How long did you get signed off sick for? And how long did you get told to take pain killers etc? Please go to the gp on Monday in case you need antibiotics and emphasise how much distress this is causing you not knowing what’s been done to you or what your diagnosis is Xx
Ive been signed off for 2 weeks from the hospital and then a further 6 weeks from my.doctor. due to go back in June (if all is well) still taking painkillers every 2-4 hours.
My belly button has scabbed over again...so I am going to leave it and see what happens with it this time, fingers crossed. Im glued to my.phone today with the hope of hearing from the hospital.
Was it a superficial lesion if you dont mind me asking?x
Hiya 8 weeks is quite a long time to be signed off if they didn’t do anything other than have a look around? I’ve only ever been signed off by the surgeon for two weeks and then a third one from the doctor as a precaution as I used to have a really long commute to work. So the doctor signed you off for six weeks without knowing what you had had done? This is all a bit of a mystery... did you hear back from the hospital today? Also from personal experience I’ve never had pain last that long after a lap but I have seen other ladies on here who have been in pain for quite a while after who presumably had a lot more work done than I’ve ever had done. maybe start a new post to ask if anyone else had pain nearly 2 months post op and see if they have any advice? Sorry not to be of more help as I say I’ve only ever had lesions that aren’t deep infiltrating into organs/ tissues etc, and no chocolate cysts or anything. It manages to get everywhere so I did have a fair bit of it in various locations but only on the surfaces of things, an adhesion between my liver and diaphragm and quite big pools of blood that they took out but that’s it. So I don’t know how long it takes to recover when they remove cysts. I’m having excision surgery in a few weeks instead of ablation but my surgeon said that I’ll still only need max. 4 weeks to recover :/ sorry, that’s not very helpful I’m afraid... definitely chase the hospital tomorrow if you didn’t hear back today. Try not to worry - it may be that you’ve had more work done than just them having a look and a poke around which would explain the extra pain. As I say don’t worry and just keep badgering them to find out what’s going on!! Xx
Try phoning PALS at your hospital. They'll chase the right person at the hospital for you and will ask them to phone you (at least that's what happened in my case). I had a discharge letter a few days after my surgery but was told my follow-up appointment wouldn't be until 6 months after the surgery....too long to wait so I managed to have it brought forward by 2 months (still had to wait 4 months to see anyone to properly discuss my case and I have stage 4 endo, so like you I felt that I'd been left to rot in the long-grass...).
You can also ask for all your medical records to be sent to you in the post without having to pay for them. You need to contact the records department at your hospital - I received all of mine very quickly - I've got all the notes that were taken on the day of my surgery and all the images too. I was even sent a CD with my MRI scans on it.
If you want to see your health records, write to the UHB Health Records Department. You are entitled to either look at your records or to receive a copy, but should note that a charge (up to £50) will usually be made.
Hmm...apparently they shouldn't charge you if you've just recently had surgery (I think there is a time-frame involved). It might be worth phoning to check...certainly I didn't have to pay anything.
If I were you I'd definitely speak to PALS again and say that you're still getting nowhere and you have a right to know...say that all this waiting around is seriously beginning to affect your health and you deserve to be kept informed!
Keep on being firm....it's so wrong to have to keep on chasing people up, but that's the reality with the NHS unfortunately.
Sending supportive hugs - do hope you get some joy in the end!! xx
Who did you chase up? I’m from north wales and had my lap 28th February and I’ve still heard nothing. No letter no nothing. I don’t know what to do about it. So I still don’t even know what they found :/
Yeah I think I’ll ring my consultants office soon. I’m just someone that hates calling people and pestering people for answers so I just continued to wait but it’s been way too long now they said I’ll have an appointment 8 weeks after which it’s been almost double that :/
I understand and Im not comfortable with it either...but it's not ok..we need to know whats going on. Whats happened. No one will campaign for your health expect you xx
I cannot believe you have not been told! I’m so glad you haven’t Jus left it till they eventually get in touch with you.. soo bad! Did you get any photo’s from you lap? I had my lap 11th April , as I woke up in recovery I overheard my surgeon on the phone but I couldn’t quite understand what he said all I heard was advanced endometriosis.. it was only me in recovery room so I thought he was talking about me.. when I was taken bk to ward my nurse told me my surgeon would be coming to see me the next again morning , my lap was at 15.00 was in ward by 18.30, the next morning right enough he came to see me to tell me what they found and what the next steps will be , I was told I had stage 4 endometriosis and was a very complex laparoscopy, he did go into more detail but I was still on morphine I was on my own with a nurse .. all I remember was sobbing on my own in this hospital bed .. I had already been given a date for my results which was 8th may few weeks later ... I’m now waiting for a mri app then I will have a big op but no app through yet .. I’m annoyed waiting for my mri app to come through.. I can’t imagine how you feel .... I’m struggling with understanding it all but I’m glad I know and I know what is going to happen even tho mines wasn’t good news I’m glad I know ...
keep chasing them till you get told and I would also call your gp every day to see if they have any results through... hope you get answer’s soon! And I do hope it’s good news for you xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.