What to do when PALS ignore you?

[DecidedlyUndecided]

I am hoping someone can help. I have been dealing with a debilitating pain in my lower right abdomen for 7 months now along with bloating/hard stomach. The pain is exactly where my appendix is and is always there but the intensity varies. I can't do the things I need to do because of the pain and it is really impacting my mental health.

I had an ultrasound early on to rule out ovarian cyst, but since then I've just been long waiting lists. I had an appointment with a colorectal consultant over the phone but I very much felt like I wasn't taken seriously and that they want to write me off as having IBS. It is absolutely not IBS, I have been on an IBS friendly diet for months and the pain is going nowhere. They put me on a waiting list for a colonoscopy but said I could be waiting a long time.

I since written to PALS to explain how the pain is so intense and I outlined all the ways it is impacting me. I expressed concerns that I haven't been physically examined and that I didn't feel I had been taken seriously. I don't feel like I can continue on in this amount of pain for much longer.

The issue is, it has been 2 months since I first wrote to PALS and they said they would urgently contact the relevant team. They said the same about 3 weeks ago when I chased this up and I have received no correspondence other than that.

I feel completely helpless and have no idea what to do to get the help I need. It feels like no-one is ever going to take me seriously and I am concerned about what is going on. I have tried so many things and it is not getting better - I absolutely know there is something wrong.

I can't afford to go private. Where do I go from here?

at least you got checked thoroughly

Yes definitely @Orangesandlemons77 - I felt like they took me seriously from the start, it was all relatively quick too.

Good

The only thing is, you’re now on another waiting list for an appointment. Did they give you any sufficient pain relief to tide you over until then?

I was diagnosed with IBS many years ago, was sent to a nutritionist who told me to increase my fibre intake, i.e bran flakes etc. I was in even more pain and horrifically bloated, it was awful. After pushing my G.P as I wasn’t convinced it was IBS I was sent to another specialist, turns out I’m coeliac 🤔.

So the nutritionist telling me to eat more fibre when I couldn’t tolerate it really pissed me off, they’re so quick to give the IBS diagnosis. I’m afraid the only way to get anywhere is to keep getting on at them until someone takes you seriously, YOU KNOW YOUR OWN BODY, and don’t be fobbed off!

This is it - they explained they couldn't do anything yesterday because my CT scan was clear and I did understand that as hard as it was to digest. I don't think the last doctor could understand why I was crying at the news that they didn't find anything - I suppose when you have spent 6/7 months in pain you just want to have an answer and get it sorted. I must admit I am feeling extremely low and hopeless today - I am worried about how long I will continue and just have no idea what the intense pain and bloating could be at this point. I was quite convinced it was my appendix to be honest. They gave me co-codamol but it isn't doing anything for the pain.

Sorry you had to deal with that - I hope you are feeling better now. Do you mind me asking what your symptoms were?

You are right, thank you - I will keep pushing for help. Now that I have had a clear CT scan it is making me doubt myself - but honestly the pain is unbearable so I have to just focus on that - there must be something going on.

I have called to chase up the colonoscopy today too - hopefully I will hear back.

I’d get the most horrendous bloated stomach and stomach pain, my skin was stretched so much it was awful. I also had bad constipation. All that is gone now I follow a gluten-free diet, which can be a pain when dining out, but most places are now switched on to dietary requirements.

Although when I want a lactose free coffee when out (lactose intolerant as well) I often get offered Oat milk which coeliacs can’t have. When I’ve explained this to the staff approximately 80% of them weren’t aware of this which just isn’t good enough. It wouldn’t kill me but would cause a lot of pain and discomfort. Drinking cows milk causes severe diarrhoea and I’m literally bed ridden for the day 🥴

PALS aren't really able to or designed for, complaints of that nature.

They're a liaison service if you have specific complaints about care you've received, not complaints that you're not getting the investigations you want.

I'm glad to see you're seeing some progress now following your recent attendance at ED.

PALS can’t change waiting lists.

It doesn’t sound like you’re being fobbed off, it sounds like you’re on a waiting list, alongside a lot of other people who are suffering in the meantime and would like to be seen sooner.

It’s probably worth a solid go through the main elimination diets to be able to cross those off the lists when you see someone. Eg. Two months totally gluten free. Two months totally dairy free etc.

I have clearly misunderstood the situation with regards to PALS and I appreciate everyone's time and honesty. I will back off and just continue to chase up the referrals through the relevant departments.

Perhaps you're right @ScaryM0nster - perhaps this is just how the system is and I haven't wanted to accept that. I don't think it is okay that anyone is left suffering for a long time. For 6/7 months I haven't been able to play properly with my young children, be intimate with my partner, perform my full duties at work or even clean my house the pain has been so bad. I am now at the point where everything is falling apart and I don't feel joy any more. It makes me sad to think other people might feel the same or worse and are still waiting months or years.

I will give the elimination diet a proper go. Can food intolerances cause stabbing pain in one specific area? I.e the right side in my case? Although the bloating is not localised to one area.

You haven't had any previous surgery in the area OP? I have adhesions (internal scar tissue from surgery) and it can be very painful.

I haven't no - that sounds painful, sorry you are going through that. I suppose this is possibly a reason why I need to be a bit cautious about a diagnostic laparoscopy?

Keyhole is meant to be better for adhesions than open surgery, it might be good to find out what is going on. I hope you get some answers soon.

I am also gluten intolerant - like the previous poster, had horrific bloating and abdominal pain (along with a raft of other symptoms 🙄) - but also had stabbing pains in my lower right side that I mistook for ovarian pain. Turns out it was gluten-related bowel inflammation! Have been GF for about six months now - it's been absolutely life changing. Highly recommend trying the elimination diet/s.

Thank you so much, this thread has really kept me going and given me a bit of hope

Ah sorry to hear that and thank you for your reply - this motivates me to start with gluten and give it a proper go. Did you end up having to have any investigations or did you start with eliminating gluten?

The GP can do blood tests for celiacs I think

Just an update, I had a colonoscopy today - they found inflammation in the right side of the appendix opening - so it could be chronic appendicitis after all?! Now for the unknown wait to discuss next step - I am really hoping this means they will agree to a diagnostic laparoscopy 🤞.

That sounds great OP. Whst specialists are you seeing and when is your appointment? Hopefully the wait isn't too long, and you can push for the laparoscopy in the appointment.

I am under Colorectal Surgery at the moment - I've had telephone appointments with a registrar on the team. I don't have any appointments at the moment, they said they would follow up but didn't give a timescale. I was wondering if it was worth getting in contact with the secretary and asking what happens next - I am so anxious it will still be battle and a long wait. I never thought I would be so happy to have inflammation, I so hope this is the answer 🤞.

Yes maybe give if a week or 2, and if you don't hear anything get in contact with the secretary for the consultant (the registar would have gone over your case with them, even if you didn't meet them yourself).

What was discussed on the phone appointment? Also I'd book a GP appointment - go over plans until you can get treatment from coloretcal. So medications (anitspasmodic meds or other type of medication, pain meds perhaps etc). They can them help to stabilise you as much as possible till colorectal are ready.

Are you having any other scans/did they bring up other scans that could be helpful?

Thanks so much for your advice @TheLivelyViper sounds like a good plan. The last conversation was mainly focusing on the colonoscopy, she had said if it was normal and no inflammatory disease that I would be treated for severe IBS. I explained that I really didn't think it was that and gave my reasons, so she said we will have another chat and when the results are in and see how to move forward. I had a CT scan whilst attending A&E in July and it didn't show inflammation but I am aware this can be the case with chronic appendicitis. So I'm really hoping the next step will be diagnostic laparoscopy - they definitely haven't wanted to do that before this point. The registrar has never seen me in person but when I have attended A&E I have met all the physical tests for appendicitis like rebound tenderness.

Yes I'd push for all of that, the diagnostic laparoscopy - just get on the list as soon as you can.

That's great, I'd make a note of the physical signs you met and tell the registrar and consultant about them.

Will do thank you so much.