follow up post laparoscopy?: hello all, I... - Endometriosis UK

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follow up post laparoscopy?

JEWM profile image
JEWM
23 Replies

hello all,

I hope you’re having a comfortable day.

Can I ask what others have had experience of post lap with regards to appointments to discuss findings/treatment/recovery etc?

(UK/NHS)

I had my first laparoscopy last Tuesday. Confirmed endo and merina replaced.

I am in a clinical trial so I have not had it confirmed if endo has been removed or not (find out in 12 months), but I am assured I will receive the same clinical care regardless.

Surgeons came to see me afterwards whilst in recovery and advised that I should call gynae the following week to arrange a follow up within 4-6 weeks. Says ‘we will follow up in 4-6 weeks’ in my discharge notes.

On calling this week I’m told that their instructions are to book me in for a follow up sometime in October. They won’t book my appointment that the surgeons told me to book and that is stated on my discharge notes.

Did others see anyone post lap?

Assuming so, How long after and who?

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JEWM
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23 Replies
Moon_maiden profile image
Moon_maiden

Hi

I’d go back to Gynae secretary and check, unless there is someone overseeing the trial you can contact. It seems a long way off. I’ve sometimes had follow ups but not always, these days the local hospital don’t book them but you can request them.

You were brave doing the trial, I’d want to know. Do you feel any different?

JEWM profile image
JEWM in reply to Moon_maiden

I’m still a bit sore from op. Still occasionally getting pains a bit like prior, but conscious they were poking around in there regardless so I think it’s too early to tell either way and I suppose the point of the trial is that it may make little difference.

Pretty sure being on the trial has reduced my waiting time for the lap by at least 6 months to a year and figured I’d at least get certainty that endo is present.

I had in mind that I could contact the research nurse, but aware she’s on holiday this week. I will push it with his secretary like you suggest though.

Thank you.

Moon_maiden profile image
Moon_maiden in reply to JEWM

Pros and cons, surgery would definitely have been quicker, understand you’re thinking. You’re right at least they know what they are doing. I thought they’d do at least two follow ups before the trial ends.

I really hope your pains do improve 🙂🤞 be really good

Sara1978 profile image
Sara1978

Hi Jewm I had my first laparoscopy at beginning of March and was originally sent a follow up apt for 5 weeks, 2 weeks later I got a letter cancelling and rebooking for Mid June hope you get your apt sorted

Emmaja_ne profile image
Emmaja_ne

I had a letter through to organise my own follow up. Didn’t give a time so not sure when I need to book for

Eeyorecasb profile image
Eeyorecasb

I had a lap just over 3 weeks ago and I've heard nothing as of yet about a follow up. Mine may be different tho as they are referring me to a specialist endometriosis centre as they diagnosed stage 4 endometriosis amongst other things.

I figured that if I haven't heard anything in a couple of weeks I'd ring the gynae secretary and ask.

I did get to talk to the registar post op before I was discharged but absolutely no follow up info was given and I didn't even think about it as was in too much pain to care straight after the op.

Hope you get sorted but i'd definately keep contacting them to try and get them to sort it.

Failing that try your local PALS. I also used someone called Healthwatch for support which seemed to help them get my lap booked in as a cancellation.

Lauraamyk profile image
Lauraamyk

hey! I didn’t see anyone post-lap but the specialist did a phone appointment follow up 8 weeks after.

OlgaSz profile image
OlgaSz

I had my lap in October and still wait for the confirmation when I am going to see the gynae post op...

Cocoacupid profile image
Cocoacupid

hun I was going to be part of that trial too but because they found severe endo I am having further surgery in about eight weeks or less . If they speak to you for a follow up that could be because they may have found moderate to severe endo xx I would ask the gynea secretary ok.

JEWM profile image
JEWM in reply to Cocoacupid

Oh my goodness - this hadn’t occurred to me that this is why, I just figured a conversation around what they saw, where they saw it and what the future holds made sense following surgery. I’m glad you’re getting followed up though!! Sorry it’s a more severe case of endo for you though. X

I have been told it was superficial endo and so I’m still in the trial, hence follow up may not be as urgent for me, but the mixed messages leave me feeling like a pest for doing as instructed.

Cocoacupid profile image
Cocoacupid in reply to JEWM

Oh ok if it’s superficial they may treat it later on as they may want to see how you react whether it’s been treated or not x also then they can put you through to surgery later on and check how bad it is later on.

Tapirtoes profile image
Tapirtoes

My follow up wasn’t very positive (uk private via nhs). I was probably in there 5 minutes, my surgeon just pushed for me to go on the pill (I’ve refused this several times because it just causes havoc with my moods) to stop it from coming back. Then he just said if the symptoms come back you can try the coil (which I’m also hesitant to go on). That was about it. It all just felt very dismissive to be honest

JEWM profile image
JEWM in reply to Tapirtoes

I imagine this is on the cards if I do get a convo. I have had issues with various pills and so refused them also, but I’m currently trialling the coil which is still in the balance 3 months in as I’m told it takes a while to settle but my periods have been longer, heavier and more painful so far.

Lauraamyk profile image
Lauraamyk in reply to Tapirtoes

My follow up was exactly the same 🫠

KittyTherapy profile image
KittyTherapy

I had my op 4 weeks ago on NHS. Was told would be followed up in clinic within 4 months but not had an appt come through yet.

JEWM profile image
JEWM in reply to KittyTherapy

This seems more like you’ve had a more honest expression of timelines than I have. I was told the October dates aren’t open for booking yet, but they explicitly stated 4-6 weeks on paperwork.

It’s shambolic.

Endoendo2024 profile image
Endoendo2024

Hi JEWM,

I had a laparoscopy 8 days ago as part of a medical trial for endometriosis. I was told I'd be followed up with on day 7, day 30, and one year (to also find out whether or not they removed the endo). Those appointments are just over the phone and I got the impression it isn't routine sadly. Perhaps they expect patients to follow up with their GP.

During the surgery they took a biopsy of some of the tissue found so I hope to hear about that.

Thank you for sharing your question

JEWM profile image
JEWM in reply to Endoendo2024

Sounds like the same trial - I have trial appointments planned but these are to discuss pain and meds etc taken for the trial data. They are follow ups with the research nurse though, not the gynae.

I don’t know with certainty but I doubt they’ll be able to tell you your biopsy result. I’d guess/hope they’ll contact you swiftly if there is any concern - a bit like smears.

Sunshine_89 profile image
Sunshine_89

Hi,

I’m not taking part in a trial but I had a laparoscopy in February and it’s written on my discharge letter that my follow up is in 6 months, I got biopsy results at 4 weeks they just wrote to me ☺️ hope this helps

JEWM profile image
JEWM

Thank you for your response.

I suspect based on all responses, I think the gynae must’ve made an error telling me I am to make/expect an appointment so soon after.

I will chase the secretary etc to be sure but it’s frustrating. It’s not the first time I’ve had a gynae suggest overly optimistic timelines.

Purplepet23 profile image
Purplepet23

I had my first laparoscopy about a month ago and they confirmed endo - I haven’t got a follow up until August! And I have so many questions.

JEWM profile image
JEWM

It’s crazy right…. Need to start writing down all my Qs for when I eventually do see someone.

N90HWC profile image
N90HWC

Hiya. I had my laparoscopy a week ago, UK based hospital. NHS surgery.

I waited a little longer for my surgery due to knowing the exact surgeon I wanted to perform the operation. 100% worth the wait. He has told me il have a 6 week follow up appointment to discuss further treatment.

If I haven't had a letter in the post or phone call by early next month I shall be calling and chasing up that appointment because I know that's what is required otherwise he wouldn't of told me that.

Id make that call lovely, explain your surgeon told you post op he would see you 6 weeks after so you'd like to get it arranged.

I was told results from the endo /cyst that I was sent off would be back in 4 weeks roughly but not to expect to hear anything as can all be discussed at the follow up appointment unless urgent but the surgeon wasn't expecting anything worrying back from the results.

Dont get lost in the system lovely, you're only looking after yourself and that's absolutely fine x

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