NHS WALES!!!: So I had my first Lap April... - Endometriosis UK

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NHS WALES!!!

DM14 profile image
DM14
27 Replies

So I had my first Lap April 3rd this year.

Havent heard from anyone since. Chased and chased and chased people for results.

Found out I wasnt even on the list for a follow up so demanded one.

Got a letter through today for a follow up June 28th!!

I wanted to knpw how everyone else recieved their results. Was it by post? Or phone call? Or at your follow up.

They said it could be between 4-8 weeks and im currently at 6 and half weeks with no answers.

Can anyone shed some light please??xx

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DM14
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27 Replies
Lovisa profile image
Lovisa

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.

DM14 profile image
DM14 in reply toLovisa

Ah how confusing! Well im abit of a mis-match. I went through Spire paid for 2 consultations. It was agreed to do a Lap.

But he said he also works for NHS and atm the waotong lost isnt long..so he will put me on there and bump me up so i dont have to pay.

So I had it in Llandough x

Flynn_Maverick profile image
Flynn_Maverick

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

Flynn_Maverick profile image
Flynn_Maverick in reply toFlynn_Maverick

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

DM14 profile image
DM14

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 :(

Flynn_Maverick profile image
Flynn_Maverick in reply toDM14

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

DM14 profile image
DM14 in reply toFlynn_Maverick

My gp has nothing strangly ive been twice to check.

Ok maybe ill try the secretrary. I feel like my consultant/surgeon is going to start getting annoyed at my persistent nagging

I will do xx

Flynn_Maverick profile image
Flynn_Maverick in reply toDM14

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

DM14 profile image
DM14 in reply toFlynn_Maverick

I phoned back the secretary this afternoon. She doesnt work fridays (how ironic) so I spoke to her collegue.

she said my results are there..and my notes are on the consultants desk..where he is in the process of writing a report to my GP.

So she has left a note for one of then to ring me back and go through my results.

Its like everyone else is being updated on my health BUT ME!

So with the weekend im assuming I wont hear until Monday now xx

Flynn_Maverick profile image
Flynn_Maverick in reply toDM14

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

DM14 profile image
DM14 in reply toFlynn_Maverick

Yes I will certainly be onto them again monday!!

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

Flynn_Maverick profile image
Flynn_Maverick in reply toDM14

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

DM14 profile image
DM14 in reply toFlynn_Maverick

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

Flynn_Maverick profile image
Flynn_Maverick in reply toDM14

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

endosufferer1999 profile image
endosufferer1999

They told me once I was awake my results and then re capped on results on my follow up also

DM14 profile image
DM14 in reply toendosufferer1999

Im so frustrated. Everyone seems to be getting somewhere. Feel like I keep getting forgotten

jjeemm profile image
jjeemm

Hi DM14

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.

Best of luck!!

DM14 profile image
DM14 in reply tojjeemm

Hey!! Thanks for all this info.

I have actually been on contact with PALS. They then spoke to.him and asled what was going on

And he said 'I will be im contact soom the biopsies still are not through) so didnt get any further with that.

I will definatlrg be chasing my.medical records!! great idea!!xx

DM14 profile image
DM14 in reply toDM14

Oh I have just seen this ...

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.

jjeemm profile image
jjeemm in reply toDM14

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

danijonez profile image
danijonez

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 :/

DM14 profile image
DM14 in reply todanijonez

Oh my word!! February! I thought i sas bad in April

I have phoned my consultants secretary 3 times. I emailes the consultant twice.

I contacted PALS in the hospital where. I had the surgery. And ive been to my GP to try and chase it all.

You need to get on it...otherwise they will leave you assuming you are fine xxx

danijonez profile image
danijonez in reply toDM14

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 :/

DM14 profile image
DM14 in reply todanijonez

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

LolaLo3 profile image
LolaLo3 in reply toDM14

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

Tjjl profile image
Tjjl

I was told after I came out of theatre .

Melanias1 profile image
Melanias1

Contact PALS and tell them what happened... they will halp you quickly. It is crazy what is happening in NHS😤😤😤

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