4 weeks post lap

[healthkick1973]

Hi all,

It’s been 4 weeks today since my lap and have heard absolutely nothing of it. I got told as I was coming round that they’d found extensive endo and made 2 additional incisions into my abdomen to try and eradicate - which was party successful but there is still a lot in there. They also said something about my bowel and needing additional surgery for the remaining endo and for a “cysts on my rectum”. Got told all this when I was still very much out of it and starting to question what I heard as I’m hearing nothing back.

Tried to ring the hospital, the Gynaes secretary and left lost of messages asking for a call back but nothing.

Starting to stress now! Symptoms are still strong 4 weeks post op and my GP is reluctant to help. Taken me off codeine as they’re addictive and I’ve been on them too long - but not replaced with an alternative.

I got told I was being referred to a pain and dietary specialist and just heard nothing!!

Xxx

[weekari]

Wow that's awful after care! I think you're doing all the right things by pressing the GP & gynae. The only other thing I can think of is trying PALS (patient advice and liason service). Every health board /hospital has one and their job is to help in situations where you feel your care isn't sufficient. That might help get you some action. If you google pals and your health board or the hospital you should get their details.

It might also be worthwhile trying to get a more pro active GP? It probably wouldn't make a whole lot of difference in this situation but you want someone who's going to be supportive for you in the longer term.

Another idea is to phone the pain clinic and check if you've been referred? If the hospital has a general switch board you can usually just get put through to them or they may have a general outpatient appointments department. I've done that before when chasing up referrals.

It's bloody awful you're having to deal with all of this on top of recovering from surgery and coming to terms with being diagnosed with a chronic illness!

I've been taking codeine for a while too. I was really concerned as I do have addictive tendencies but I asked GP & read into it and it seemed OK to use it longer term as long as its not every day and multiple times a day. I take usually 1 dose twice a week, sometimes a little more. It depends on how regularly you need it. I'm planning on trying cbd oil as an alternative as I've heard amazing things.

I hope my suggestions help and you get some decent answers soon! X

[healthkick1973 in reply to weekari]

I’ve been told off a few people to reach out to PALS so I’ll definitely get on to that! I feel as though it is really poor care I’m only 19 and I understand they have patients coming in every day but this has pretty much consumed my life. Things haven’t been normal for nearly 2 years now and I feel like they’ve done the surgery and ticked me off the list but my journey is only just starting in my eyes!!

Very frustrating mentally and family and friends think all is well now surgery is done and no more appts but that is not the case as I know I need to be referred! And knowing there is still stuff inside of me that they haven’t treated is so scary. Can’t really talk to anyone about it so comments like yours are so helpful and mean a lot to me! So thank you xxx

[weekari in reply to healthkick1973]

It is a lot to deal with, especially at your age. It's a really tough thing to deal with. It's an age where really, you just want to not have to think about serious issues. I'm 40 in a few weeks and find it hard. I have just been diagnosed through an orthopaedics referral and have been waiting to find out what the hell is going on and what my options are and my head has been in a total spin. I've been a mess! I've been really badly messed about too and it's exhausting to deal with it all on top of all my symptoms and everything else I'm dealing with. I can't imagine how I would've coped at 19! You're doing great finding things out & coming on here and asking questions. I hope you're giving yourself some credit for how well you're coping with it all?

The NHS is really underfunded and have pressure to meet targets, which only counts your first appointment so once that's done, you're journey isn't really being monitored any more. You'll actually be recorded now as 'treatment complete' which is obviously ridiculous. The service will just be focused on getting the next person off the waiting list. It's not how the clinicians want it to be either, they're under so much pressure. But that doesn't mean that you just take it, it shouldn't be this way so I think you're right to stand up for yourself and push for it to be better.

These battles can be tough but just break it down to one challenge at a time and try keep the phone calls, emails etc for days that you feel up to it. Give yourself plenty of time to think about & do other things so that this doesn't define you.

Xx