Appendix, cyst or digestive disorder?

Hi all,

I'm at a bit of a loss of what to do and wondered if anyone has been in a similar situation before/can offer advice on my current situation. This post will be pretty long, so THANK YOU if you take the time to read it - I really appreciate it!

Over 12 weeks ago now, I started having reoccurring episodes of getting sick. It would usually start with a mild headache, slight nausea and heartburn, before progressing to severe nausea (sometimes vomiting) and diarrhoea. These episodes would last for around half an hour to an hour and then I'd pretty much go back to 'normal' and be able to eat again. I put this down to IBS-type symptoms and didn't worry too much at first.

However, as the weeks went by, these episodes would become more and more frequent, last longer and be more severe. Eventually, about 6 weeks ago, I got to the point where I was ill every couple of days and had to keep leaving work early. I was gradually losing my appetite and getting ill off food.

I went to the doctors numerous times up until I got severely ill and they suspected an inflammatory bowel disorder. I was put on the waiting list for a colonoscopy and endoscopy.

about 5 weeks ago, I got very sick. I was waking up at 5am each morning with severe diarrhoea, unbearable nausea and/or vomiting and a gripping/burning pain in the lower right of my belly. One morning, the diarrhoea was black and tar-like as if it had blood in it. The diarrhoea and feeling in my belly was unbearable. At my worst,

I even had diarrhoea on the sofa and didn't make it to the bathroom. I completely lost my appetite to the point of where I could only eat a small pot of jelly a day or suck on an ice lolly. I had a temperature, was sweating, couldn't stop shaking, couldn't stop urinating and had horrible burning in my right hip and lower back.

It got so bad that I went to A&E multiple times and on the worst day, ended up calling an ambulance. After blood tests, physical examinations, urine tests etc., they eventually admitted me after I came in the ambulance.

I was in hospital for 6 days in the end. They did stool tests and more blood tests, but nothing was coming up. On the 2nd or 3rd day, I experienced excruciating 'pain' in the lower right of my belly... I felt like something was going to explode. After a couple of hours of pain, I felt a strange 'pop' sensation and heat radiated throughout the lower right of my belly and my back. It was the strangest sensation I've ever felt... it felt like sunburn on the inside of my body. I explained this to a doctor and they got me in for a CT scan 2 days later. All that showed up was a small cyst on my right ovary, but they said the scan was very shaky from me moving about too much (I was in too much discomfort).

After that 'pop' happened, I very slowly and gradually started to be able to eat a bit more. I'd lost 9kg in total throughout this illness. As I was admitted, they moved my colonoscopy and endoscopy dates forward and I had them performed on my second to last day. Everything, including these tests, came back normal.

After 6 days, I was discharged with a 'suspected' diagnosis of an ovarian cyst and spent a further 6 days or so at home being very ill still. However, it wasn't as bad as before that 'pop' happened. Last Wednesday, I woke up feeling much better and started to eat meals again. It was the best feeling. I was 'well' again for just under a week, with the occasional bout of illness and feeling pretty weak/tired throughout the day. Despite my improvement, I'd already made the decision to go private and proceeded with my appointments. The consultant didn't suspect my experience was down to an ovarian cyst and said these cysts would never cause diarrhoea. However, she booked an ultrasound appointment in for me to be on the safe side.

A few days ago, I started to get ill again. Not to the same level as before, but still with the horrible diarrhoea/nausea in the mornings and gripping/burning feeling in my lower right. I attempted to go back to work for 2 days but I just couldn't cope. I've been off for a month now and have been told not to come back until I'm better.

I had my ultrasound scan yesterday and all it showed was a small cyst again, but not anything that would be suspected to be making me ill. The technician asked me if I'd had my appendix checked after hearing my symptoms, but I've had blood tests and scans and nothing has shown up. I left the appointment crying at a complete loss of what to do. I have a consultation Saturday but these appointments are costing a fortune and I'm not getting enough income with being off work.

I'm really starting to think it may be my appendix... I was leaning more towards the ovarian cyst issue before, but now I'm not so sure. It feels like something is swollen and rotten inside of me... I don't even know how best to describe it. I'm desperate to get better and I'm at the point where I'll do anything. Does anyone have any advice on the best steps for me to take? Has anyone been through a similar experience?

Thanks for reading!

7 Replies

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  • Sorry I can't help you but t sounds awful.the only thing I can say if you have had all the usual tests colonoscopy ,scans etc at least it's nothing sinister going on .have you had a stool test for HPoli ? If not worth asking for a stool tests this can cause all sorts of severe stomach problems as I had .hope you find out soon what's wrong

  • Look

    On youtube for how to tell of it’s your appendix. There’s an easy way. Also if you feel it when you walk. I had mine out a couple of years ago. I have also had cysts and sometimes a very large one with debris can put a lot into your system abandon make you feel like crap. However it sounds like much more than that. Keep pushing my tests always and still come out normal. I have PI IBS short for i for salmonella probably damaged by intestines but they don’t know for sure and wanted to give me a diagnosis.

    I don’t know your age but if you are over 45 a hormone panel may benefit you as well.

    Good luck!

  • Sorry this sounds awful! My thoughts were appendix but they would of picked up on that in hospital. Sounds like a case of getting checked for different things to rule it out. Make a list of all the things you have already been tested for - ask doc for list as you are allowed access to your records. Rule out the serious ones i.e. Various types of cancer - ovarian, cervical, bowel etc. Have you been referred to a specialist to look into possible IBD, crohns, colitis? In terms of IBS have you changed your diet at all to suit any food sensitivities or allergies? X

  • Oh no you poor thing, this sounds a lot more than IBS.

    I see that you have now had a Colonoscopy and Endoscopy and as far as I'm aware both of those tests test you for Crohns and Celiac diseases. This honestly looks like something else is going on but I don't know what. Have you listed your symptoms and had a look on the internet? I read magazines a fair bit and often read within the health pages that people go back and forth to their doctors and get nowhere and get fed up. What they do then is list their symptoms, go on the internet and sometimes get a diagnoses and go back to their doctor. There are a few true stories that I have read where the patient is actually right about their illness once having looked it up.

    I cannot suggest anything else but it's worth a try, you can't go on like this. Also, sounds like you are not getting any further privately so I would go back to the NHS.

    Thinking of you.

    Alicia

  • Well I'm wondering have you asked to check your gallbladder for gallstones my partner left having his removed until he got pancreatitis and what you describe is very similar. Wish you better 👍

  • Ask them to check your gallbladder, I had these very similar symptoms and I know that it could be a lot of things but if you research gallbladder it typically describes what you are saying. I was sent to A and E as I had a diverticulitis flare but in the CT scan they did it showed I had a very small gallstone. The pop you experienced could have been the gallstone that may have been blocking a duct popping out into your intestine and your body getting rid of it, that is why you felt better, but you may have more or gallbladder not working properly. Go back and ask for them to check. Good luck xxx

  • Thanks all for the responses. After another hospital admission and paying for a consultant that I thought would help me, he diagnosed me with IBS and prescribed an antidepressant. I've been told to try it for 3 months and come back in February. I'm absolutely devastated and cannot leave my bed due to depression, which is ironic due to the tablets I now have to take. IBS does not cause complete loss of appetite to the point of where you can only force down a small pot of jelly a day, severe right sided pain, itching and burning, 12+ bouts of diarrhoea in one morning (one stool with blood), nausea, vomiting, fever and shakes. I give up.

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