Laporoscopy follow up poor?

[Kricam78]

Hi all 👋

I have undergone a lap today at Sunderland Royal Hospital. The op took only 45 mins and I was returned to the day case ward where the nurse advised me that my follow up would not be for 4 months where the consultant would discuss his findings. I'm not sure if this is usual?

I asked if the consultant would at least be popping by to have a quick chat but was told this wasn't normally the case because he would be in surgery all day. Thankfully the nurse was lovely and asked the consultant to pop in but the visit was very brief where I was told that he found endo between uterus and bowel, mainly on the right side which was cauterised and my left ovary is stuck to my bowel but no surgery would take place to free it in the hopes the endo he cauterised would lessen my symptoms anyway. I didn't receive any report or notes on being released.

I suppose I'm just feeling like the service was a little lacklustre. Had I not asked to speak to the consultant I would be none the wiser for another 4 months as to whether I even had a diagnosis of endo. The brief chat raised questions for me but I felt like the consultant was anxious to leave so didn't push too hard with questions.

Is there a way I can find out more about what was found? Does the consultant send notes to my GP that I might have view of?

Thanks for any info/advice guys.

[Moon_maiden]

HiSo sorry about your experience but it’s not abnormal these days and we get left high and dry. The Gynae couldn’t have touched the bowel as it would need a colorectal surgeon involved and this wasn’t anticipated. You should have been given something about op. The best way is to request a copy of your notes, there will be a link on the hospital website to do this. You have to allow a max of 28 days.

Hopefully your symptoms will ease 🤞 I would suggest that you ask your GP to refer you to a team that has multidisciplinary teams for this type of surgery, these are more likely registered as BSGE but not limited to. If you research this and find the right place, which can be out of your area, you’ve got the info to present to your GP.

I know that this isn’t much but you obviously had a good surgeon that could recognise Endo, so many don’t. This may help a little. Sorry you have it at all though.

Do make sure you rest and don’t go lifting anything for a couple of weeks or as you feel ready, your insides have gone through the mill and had treatment where he could.

3/4 months is normal unfortunately for a follow up. I did pay to see mine as it was too long for me and in pain.

The RCOG website has patient info for recovery.

[Kricam78 in reply to Moon_maiden]

Thanks for the great info Moon_maiden. You're right I should look on the positive side (if you can call it that!) and at least be thankful that the surgeon was experienced enough to find endo and treat what he could.

I'll certainly look into requesting my notes from the hospital after the month has passed, and give it those 4 months to see if my symptoms improve. I'm not so positive that they will as most of my pain is on my left side from pelvis to rib (rather than right which is where it seems the surgeon found most endo) and over my uterus (believed to be adeno) but I have to be patient and roll with the system!

If things haven't improved then I will look into referrals to endo specialists since it appears there is bowel involvement.

Now to concentrate on recovery and trying to convince my toddler that mammy can't be a climbing frame for the next couple of weeks!

Thanks again 😊

[Moon_maiden in reply to Kricam78]

Trying to get a bright side 🙂

Sorry, misworded about notes, you can request them now, they say they have 28 days to get them to you. Good luck and 🤞 you get enough improvement that you won’t need a referral

Good luck with your toddler, lots of stories take their mind off other avenues 🙂😂

[Sae92]

Hey! Exactly the same situation here so I fully hear you. I had my surgery on the 23rd December and I got 2 minutes with the surgeon afterwards. He explained he found endo 4 places, I think he said on my appendix walls and between uterus and bowel but to be completely honest I was still groggy so I don’t really remember. He didn’t say how he’d removed it, if he’d got it all and just told me we’d follow up in 3 months.

I was so shocked that they found it I didn’t even think to have questions because I knew next to nothing about endo so the past week I’ve been going out of my mind overthinking and worrying. I do have my notes from the procedure but I can’t really make sense of it, it also makes it look like they’ve fitted a merina coil when I specifically said not to so I’ve now got to wait 3 months to find out if I’ve had a coil fitted!

I am super grateful that I got the surgery and that I finally have a real diagnosis it’s just such a shame the aftercare and information is so minimal because it’s a big thing for us to get our heads round.

I really hope you get some better information through your GP, I’m planning to do the same and see if they can make sense of my notes.

Sending you lots of love! x

[Kricam78 in reply to Sae92]

Hi Sae, sorry you had poor after care too. I think for surgeons it's possible that we become just another patient on that treadmill and they lose insight into just how big these ops and their outcomes are for us as individuals.

I believe we have a right to know everything about our bodies though and clear updates should be part of the procedure as standard, and it should come in a timely fashion!

I work as a police officer and it's tantamount to me attending your burglary, taking a statement and then just walking out the door with no word until 4 months later whether I found the suspect and was successful in any prosecution! My bosses would have me hauled over the coals lol

If I was you I would certainly be asking questions now about whether they fitted a coil against your wishes as I think that would be something worthy of a complaint.

I also hope you get the answers you need regarding the condition. It seems we have to advocate for ourselves and push to get a good service.

X

[Sae92]

Hey! I couldn’t agree more, we should never be left guessing when it comes to our own bodies. Thank you so much for taking the time to reply. Hope all is well with you and wishing you the best of luck on your journey x