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?

Went to the doctor's today as I'm really struggling with the pain and the wait. Left in tears - Dr said chronic appendicitis isn't real. He didn't listen to my reasoning and the symptoms and didn't agree that inflammation on the appendix opening could be significant. He seemed offended that I even suggested it which made me feel awful.

I hope I can just ignore that appointment but now it has worried me even more that the colorectal surgeon follow up will go the same way. I am getting to the point where I can't cope mentally or physically anymore.

I'm so sorry it didn't go well, was that with your GP or someone else? I'd try and block it out of your mind and focus on the colorectal appointment - I'd be pushing for a diagnostic laparoscopy because it may be your appendix but it could be something to do with your bowels, liver etc. Obviously the colonoscopy did hint at the appendix but the lap will be a much better indicator.

Did the doctor make any sort of treatment plan? Again I'm so sorry, I know how horrible it is when medical professionals gaslight you and dismiss you, it's already so much living with everything going on, and then the people who are meant to help, just don't believe you. But it really wasn't you but that doctor, if you want you could file a complaint with the hospital or the GP practice manager or PALS. Even when a doctor disagrees on a diagnosis or something (which is fine and they may ne right) they should empathetically explain why to the patient and then work with them on a plan - disagreeing on a diagnosis is fine but ignoring the patients reality of symptoms is not.

Thank you so much for your lovely reply and understanding @TheLivelyViper - I feel really touched that you have taken the time to reply to my updates. You have given me hope.

I saw my local GP today. To be fair to him, he did say he would write a letter to the consultant to say I was still in pain - I am slightly concerned he will add his dismissive views into the letter and make the fight for a laparoscopy even harder. Although this is probably a lack of understanding about how things work on my part. He also spoke to me about IBS and prescribed nortriptyline. I think nortriptyline is something I would consider taking if I am able to have a laparoscopy and nothing is found - in the mean time I still believe there is something to find.

I hope so much that it won't be a battle with the consultant when they get in touch. I had so much hope after they found the inflammation but this GP has taken that away. I am also getting more worried about the potential consequences if it is my appendix, the pain is worsening and becoming more sharp since I had the colonoscopy and I don't trust that I would know if it has ruptured - I am so used to the pain. I don't see that A&E would ever treat me as an emergency if it is chronic. I was hoping to talk this worry through with the GP but obviously it was a non-starter.

I completely understand, it's easy for people who aren't chronically ill and are healthy to know when somethings wrong because they aren't in pain all the time like us. So it's so hard to detect whether you're having a worse flare-up or if something acute is happening - from your chronic problem. Hopefully the letter is still helpful if he stresses the increasing pain - but make sure you also do when you see colorectal. I'd also read up on tips for patient advocacy and how to talk to them to make sure they don't gaslight you (or don't get away with it), I'll try and find some links which are helpful on the topic.

Has the GP prescribed anything else? What type of IBS do they think you have? Because they think it's diarrhoea then they can prescribe more anti-motility meds with antispasmodic ones (stops bowel cramping, spasms etc), or if they think it's constipation, then they could prescibe more osmotic laxatives and again the antispasmodic meds. Even if they don't work, that can strengthen your case against the diagnosis, it may also be a long time till you 1. See colorectal and 2. After that appointment (likely months away) then be booked in for a diagnostic laparoscopy. Having some relief might be nice - also just because they work it doesn't mean you have IBS but it could help slightly at the very least NSAIDs and antispasmodic meds will help will inflammation, cramps etc.

Colorectal will obviously be much more 'on it' in their knowledge and also more knowledgeable about treatment options, when you get an appointment date give us an update. I'll try and find some good links on tips about doctors appointments, it's a shame this is a thing patients need to think about.

Having had a ruptured appendix, I can confidently say that you would be very aware of it happened. It’s not so much the pain as the high temperature, vomiting, fever / chills. It happens very quickly - mine went from being a bit of tummy ache to full blown delirium within about 3 hours. I needed open surgery and spent a week in hospital recovering.

Thanks so much @TheLivelyViper - that would be amazing. It would be great to be prepared so that I am clear and calm, rather than emotional like today.

It scares me to think it could be months before any kind of discussion let alone laparoscopy - which makes me realise I should probably take pain relief seriously in the mean time. He didn't say with regards to IBS - my bowel movements tend to float between the two, although at the moment they are pretty normal despite the pain being worse.

Thank you for taking me seriously, sorry to read that you have been dealing with chronic pain too.

I have struggled with health care professionals not taking me seriously in the past, which I think can make this situation quite difficult to navigate. I was told for a long time that chest pains were due to anxiety when they turned out to be costochondritis. The worst one was having very serious things dismissed during labour - my little one was eventually born extremely poorly and starved of oxygen.

Sorry that you went through that, that sounds very scary.

I suppose part of my point is, I would really like them to take me seriously before it gets to that point.