Is chronic appendicitis real? Please help me to be assertive.

[DecidedlyUndecided]

I have posted about this before but I'm currently preparing for a conversation with a doctor from the Colorectal team and I really want them to take me seriously. I am hoping to get some advice and (hopefully) reassurance that I'm not crazy.

I have been dealing with pain in my lower right abdomen for over 7 months now. Along with bloating, hard stomach and a host of other issues that match the symptoms of chronic appendicitis. The pain is a mixture of dull ache, sharp, stabbing and it is constant but gets much worse at times, I haven't discovered any patterns or triggers.

I've had a CT scan which did not find the cause of my pain and my bloods haven't indicated inflammation when they've been tested. However, I experience rebound tenderness, pain in the right when pushed down in the left abdomen and pain with specific leg movements - which are the classic tests for appendicitis. The pain, symptoms and response to these tests have always been discounted because of the CT scan and bloods being okay.

Every Doctor I have spoken to has suggested chronic appendicitis is not real, but there are many accounts of it online. I also know someone who had the same symptoms for two months, with nothing found on his CT, and it turned out to be his appendix. He was offered a diagnostic laparoscopy reasonably quickly.

Recently, I had a colonoscopy and a small patch of inflammation was found on the opening of the appendix, which makes me wonder if it really could be my appendix after all. Colorectal will call me again at some point to discuss the findings of the colonoscopy and biopsies and I really want them to agree to do a diagnostic laparoscopy at this point. However, any discussion about this before has been quickly shut down. I've only ever spoken to them on the phone and I really get the feeling that they think it is IBS or in my head.

I absolutely know there is something seriously wrong going on in my body - the pain is impacting every aspect of my life and I can no longer cope. I have tried elimination diets and FODMAP and the pain does not respond to dietary changes, it also does not respond to physio. Ovarian cyst/reproductive issues have been ruled out with an ultrasound scan.

I was hoping to know if anyone has any experience with chronic appendicitis and also to understand how to get them to take me seriously? I can sometimes get emotional because I am struggling with this so much - I want to go into the next conversation strong and assertive. I would really like them to agree to a diagnostic laparoscopy and I don't know what to do if they say no. I am also concerned that even if they say yes, it could be a long waiting list. I am really hoping the colonoscopy finding will help me but I'm preparing for the worst. Any tips would be much appreciated.

I am open to the idea that it could be something else but feel a diagnostic laparoscopy is a sensible next step at this point.

That is madness @AlwaysFreezing sorry you went through that, although I am impressed with the medical record!

I've called colorectal to ask what to do as the pain is getting worse, my biopsies from the colonoscopy aren't back so they can't do anything but they have given me the telephone number for the surgical assessment unit at the hospital. They said to call if it keeps getting worse - really not sure what to do as I'm sure they won't do anything if they don't see it as an emergency.

Also @AlwaysFreezing - can I ask about your symptoms and was the pain constant?

The pain wasn't constant. It was a griping pain but would crescendo at times and it was the crescendo that made my mom get doctors appointments because it was si bad i didnt know where to put myself. Actual agony. I had pain in the tops of my legs, like deep inside. And I had periods of the pain being low key and also being pretty intense but not as bad as the crescendo times. I did have some pain free time, but I actually think, looking back that maybe it just wasn't as bad as it could be and I just thought it was normal to have low level pain. I also took painkillers regularly. I was a teenager at the time.

When they pressed my tummy it would always hurt.

Remember that because it was wrapped around everything my symptoms weren't standard. I would say I can feel a pulling pain. Which in hindsight made the medics convinced it wasn't appendix as that wasn't usual. We now know it was pulling on various organs. I honestly thought they all thought I was faking it. It was pretty horrible.

One surgeon asked me to flip over in the bed. I did. And he said it can't be appendicitis because you wouldn't be able to do that of you had appendicitis. That was 24 hours before they took it out. I think a suregoen just took pity on me and perhaps wanted the practice at an appy. He certainly got some practice because the surgery took the best part of 8 hours!

Not sure if this makes sense?! It was a long time ago.

Hope you get some answers.

My dd was diagnosed with a grumbling appendix (possibly the same as chronic appendicitis?) she would get awful stomach pain, temp, sickness but when we went to a@e they would monitor it would stop and we would go home. Eventually (after around 6 years) they decided to remove it. When they took it out it wasn’t at all inflamed but she did have a 5cm cyst on her ovary. Doctor had not clue whether she had mis diagnosed or not but touch wood it’s been 9 months since her appendix removal and the pain hasn’t returned.

Just to add my experience to the stories above...

Over about 3 years I had 5 or 6 bouts of extreme abdominal pain, vomiting, high temperature each lasting about 24/36 hours. I was hospitalised each time and had various tests which indicated that it might be my appendix that was the problem but each time was given a different reason for not removing it - I wasn't in 'enough' pain, my infection markers weren't high enough, and once I was told that because I was a student at the time there was a likelihood it was actually an STD!!! The final time I had an episode I was when I was working abroad and the Doctors there took a very differenct approach and removed my appendix immeadiately because 'no one really needs one so lets rule it out'.

Dear reader - the problem was my appendix and 20 years later I have never had another recuurance of the pain or illness.

I didn't have pain between flare ups, which I suppose is why it went on for so long. The first time I was given antibiotics and they seemed to work. The second time a different GP refused to give me anything and told me to take pain killers (and unspoken, but "stop wasting my time").
The pains felt like something was inside me, trying to get out. Waves of spasms I suppose. And as someone else mentioned, a pulling pain when I went to the toilet. Not a sting like a urine infection, but a pulling sensation inside, that I could never quite properly verbalise. I also had that reflex pain when the doc examined me, but I didn't realise what that meant. And it hurt when I walked. All in all pretty appendicitis like, but just not quite enough to be diagnosed and dealt with there and then.

I really appreciate everyone taking the time to share their experiences. I think it's clear that it is real and a possibility but also it seems that you have to speak to the right person to get help for it.

I relate to the pulling sensation too. I guess I will have to just keep fighting my corner and hoping that eventually someone will have a look inside and help me. The waiting lists are brutal, I haven't been able to function properly for over 7 months. I was told by one healthcare professional that this was no time, but I am at the point of not coping at all anymore physically and mentally.

I’ve had appendicitis 4 times and multiple “grumbling” appendix incidences. Just keep being given antibiotics to treat it! Don’t know why they just won’t take it out

I had what they called a grumbling appendix in my teens , similar sounds symptoms to you , eventually it stopped grumbling , became wildly inflamed and burst. I was told after that a lot of people who get appendicitis have a grumbling one months / years before hand.

I most definitely had it twice before having it out, but not constantly

Thanks so much for all of the replies, way more experiences than I expected!

This thread has convinced me that I can no longer wait around curled up in a ball of pain. I called the surgical assessment unit and they are going to fit me in tomorrow morning. I asked on the phone what do I do if it continues to get worse over night - after reading my notes, the lady said 'that seems unlikely' - made me feel like I'm being written off already. Although she did make an appointment so that is good.

Trying to stay positive, I'm going to stay strong tomorrow and I am going to try my best not to cry. My husband is coming with me. I have no idea what I will say or do if I am dismissed again but I'm preparing for the worst. I can't see a world where they will agree to do surgery but I am going in fighting (politely of course). My kids deserve a mummy who can play with them and take them out properly again - that's what I'm going to try and remember when I start to worry about wasting everyone's time.

I was fobbed off for years with"There's no such thing as a grumbling appendix" My symptoms were really debilitating, non localised severe abdominal pain, sweating, continuous waves of nausea and vomiting so bad I couldn't get out of bed for a whole day, happening every few months.. Till the day it ruptured and I needed emergency surgery to clean up the mess inside. Guess what? Never had those symptoms since! I don't know though how you get doctors to listen. Even when I was admitted, they spent hours faffing about ruling out the possibility of an ectopic pregnancy before having to do emergency surgery at midnight.

@DecidedlyUndecided I can truly sympathise with you. I had grumbling appendix as a teenager, ended up having out at age 20 in America (luckily uni insurance got the bill) there was stones in my appendix and inflamed. I also had PID and adhesions at this point.

20 years later, i have been struggling and suffering with lower right quadrant pain. Been on a combo of gabapentin and tramadol and still uncomfortable and in pain. GP is thinking adhesions related to previous surgery, but the NHS moves at a snails pace. Get my CT scans tomorrow and bricking it - I just want a flipping diagnosis. Constant pain with massive flare ups that put me in bed for a couple of days make me feel like a useless wife and mum. I do feel pulling and the only pattern i can spot is two day post period are the least painful in the month. Gp suggested soft food low fibre low residue diet which has somewhat helped - means i just take gabapentin no tramadol.

Its more a post of you’re not alone - unmumnetty very gentle hug.

That sounds really awful, sorry you went through that. It makes me so sad that so many people have been left until it became a dangerous situation/major surgery. The colorectal registrar I have been speaking to has previously rejected a diagnostic laparoscopy because surgery has risks. But surely it is better to operate/investigate when it would be minor surgery rather than to wait until it is a life-threatening situation?! I don't understand it. Glad it was sorted in the end but sorry that it had to rupture to get to that point.

Thank you for your lovely message @Thelosthalfathought - I'm really sorry you're going through all of this. I really hope the CT gives you answers that are easily sorted 🤞. It is so hard waiting in pain without a diagnosis.

Thank you for the hug, right back at you!

Well despite asking for a particular GP I got another different one.... everything came back as normal so told to keep popping all the pills and being referred for Colonoscopy. Thankful they didn't find any masses but pissed off still no diagnosis.

How has your Friday been?