Test results show something, health anxiety going mad

[claireypoo]

Hi NMP peeps. I really need some help with my health anxiety. (I am waiting to see a CBT counsellor, finally got referral from GP to see a counsellor for intensive face to face therapy.)

This is what I am freaking about right now. I had the results of my barium swallow and meal and now my health anxiety is going berserk. :( The receptionist called me and said I had nothing sinister showing up on the barium tests but I did have a 'gullet pouch that might need treatment' - she said my doctor would phone Monday to discuss.

Fast forward to now - after I have Googled my arse off and found the correct name for this is 'oesophageal diverticular' and that in the UK the preferred treatment is OPEN NECK SURGERY. To say I am freaking out is a massive understatement. Even though I hoped liked mad that this was an anxiety related symptom, I didn't think it was globus because mine only happens when I am lying down after drinking/eating and lasts for hours, but doesn't happen if I don't lie in bed.

Today I am struggling with burning pain which came on earlier today, which I thought had gone away. :( So I have something the matter which isn't anxiety so I have no idea how to deal with it. Apparently a gullet pouch is rare (1-2 in 100,000) and if you factor in my age, even RARER. I am terrified. The treatment in the UK is open neck surgery.

You see, I always get rare things or am around people that get rare things. :( How can I rationalise health anxiety if I can't agree to 'why do you think you have Y when the more likely problem is X' WHAT IF X IS THE MOST LIKE OUTCOME FOR *ME* ? I have bad luck I think. :( My daughter was born dead and resuscitated after 9 minutes and has been left with profound and multiple disabilities. My father got Picks disease at 54 years old. I can't have children now because of medical negligence.

What are the odds of these things happening? Pretty remote I'd say? And that is just my daughter, my father and me. Add in my step father (broken neck) and my sister - bursitis AT 36 and the odds are even more remote! How can I rationalise.

Sorry, but I don't get this. :(

[Carnation]

Ok, calm down. You said the Receptionist said NOTHING SINISTER. and, it was a Receptionist telling you this, not a Doctor. If it was serious you would be sitting opposite a Doctor to receive the news. Yes, it may be rare, but not Life threatening and as far as the CBT; it couldn't have come at a better time. You will really benefit from this. Nothing to be scared about, quite the opposite. :)

[claireypoo]

Hi there, thanks but the test I had the results for was a barium swallow and meal. My GP said this wouldn't show anything unless it was (quote) barn door, and the only reason I had it was because of two failed gastroscopies. There still could be 'something sinister', but this barium swallow and meal may not show anything smaller up. This is why gastroscopy/ upper Endoscopy is the gold standard for upper GI investigations. :( I can't reassure myself with 'nothing sinister' on this one. My GP didn't want to send me at all as it wasn't a clear test. :( :(

---------- Post added at 20:58 ---------- Previous post was at 20:56 ----------

Also the receptionist had to ask a doctor first and only did that because I begged. My doctor wasn't there to-day and they tried to make me want for a face to face with her on Monday. :(

---------- Post added at 21:31 ---------- Previous post was at 20:58 ----------

Thank you, though, I really appreciate your help and I'm sorry - I don't mean to sound negative, but I am struggling to see how I can rationalise this. X

[Fishmanpa]

As hard as it is, you have to wait to discuss this with your doctor. You're basing your panic on Dr Google and you "Googled your arse off" until you found something sinister to fixate on! Do you really think they would have said "nothing sinister" if it wasn't? Keep in mind they only allow a receptionist to tell you something if it's good news!

Positive thoughts

[claireypoo]

Thanks FMP, but the receptionist only told me after getting autho from on-call GP because I was so distressed. They wanted me to see my own GP on Monday. Also the test wasn't the one my GP wanted me to have and said they rarely show anything unless it's 'barn door', so I was never going to feel reassured on this barium test anyway, especially as the GP made it sound a bit useless compared to Gastroscopy. I wish I hadn't ruined the gastroscopy. I wish the sedative had worked. :( But you are right about the waiting. I wish my GP had been there today. I wish I could handle waiting better. :( :( Such a mess right now. :(

[swgrl09]

She probably had to get the authorization to tell you from the doctor because it is just their protocol.

[claireypoo]

Thank you :) Yeah, she said the first time I called, that she couldn't discuss test results until a doctor had seen it. She said that was their policy. That's why I begged her, crying, to get the on-call GP to look at them this evening. She called me back and said, she' d had the on-call take a look and he wouldn't say much because my GP was going to call me Monday, but to put my mind at rest he said to say that the barium swallow showed 'nothing sinister' but it did show a gullet pouch that might need treatment and that my own GP would discuss." The results had only just come back, which was 3 days after I had the test.

I'm worried about the gullet pouch (AKA oesophageal diverticular) and why it is there (which the swallow test unlikely to answer unless glaringly obvious - according to my GP), what the treatment is likely to be (surgery from what I've read) and how I can cope with all of this, with crippling health anxiety. :(

[Fishmanpa]

Do you have a chill pill like a Xanex or something to take? It's quite apparent that you're just short of hysteria as nothing anyone can say will help at this point :( I sure hope you find a way to relax a bit.

Positive thoughts

[claireypoo]

I feel like such a failure. And I'm so tired. What is Xanex? Like a valium? I'm not good with benzo sedatives unfortunately. I get hyper. But I might have a glass or two of wine. Sometimes, that stops the OCD cycle. (temporarily, anyway, but it messes up my digestive system too. Can't win!)

Thank you ALL for all for all your help. X I shouldn't have posted, I think like you said FMP, I need answers only my GP/Consultant can give me. My symptoms (this time) are not anxiety related. Hopefully the CBT will help me manage the new diagnosis/investigations. Or maybe I should think AD/OCD meds again. I really appreciate you all trying, though. X

[cpe1978]

I was in a meeting earlier this weeks when someone was talking about rare diseases. The thing is that as a collection, rare things are not rare because there are a lot of rare things, so the chances are we will all have something rare at some point if that makes sense.

The other thing that HA folk need to realise is that if we test enough we will all find abnormalities in our bodies. Sounds to me like the GP has found something, and will discuss approach with you next week. I know it is hard for us not to worry, but try and wait to see what they say.

[claireypoo]

Thank you. I am trying to put my 'coping head' on. :) Does it seem to you like rare things aren't rare for me though? I think about the odds sometimes mathematically and it blows my mind. It makes rationalising really hard because it seems personal. (I know I've lost it.) :) x

---------- Post added at 23:47 ---------- Previous post was at 23:46 ----------

That does help though. Rare things TOGETHER make a group of rarities and a GROUP isn't rare. That sound right? :/ :)

[swgrl09]

Ok, if it helps I googled it for you - so DON'T ANYMORE. It seems like the main treatment people get is just watching their diet and drinking a lot of water to rinse food down their throat. Surgery is only if it is severe and causing a lot of problems for you. I am not a doctor, but I don't think you need to jump to surgery as your answer right this minute.

[Serenity1990]

You googled and Dr. Google told you you'd need "open neck surgery".

Two things:

1. Dr. Google is never right.

2. What the big deal with surgery?

[claireypoo]

Swgrl09 I am having some horrible symptoms, and diet hasn't worked. This has been a problem for a few months now - worsening. I think my GP will recommend surgery IF I THINK I NEED IT. And that leaves the decision to me. And I hate making decisions.

Serenity 1990 - Google might not be right, but I tend to look beyond Google and Web MD! There isn't a vast amount of info on this condition, compared to others, probably because it isn't very common. That cuts out a lot of the rubbish.

What's the big deal? I am TERRIFIED of putting myself through a surgery and making the wrong decision. Also I have not had the best experiences with doctors. I was left unable to have children and my daughter was left profoundly disabled due to medical negligence.... So I have serious trust issues. That is why I am so scared.

---------- Post added at 01:31 ---------- Previous post was at 01:26 ----------

But thank you both for your help. I know it is kindly meant, and I appreciate that. Thank you x

As I said, I shouldn't have posted. This is probably a conversation to have with my GP/consultant. I just don't feel brave enough for any more tests . And I bet there will be. I feel like my mind will snap like a dry twig. Hard to rationalise and I'm not coping very well. I feel overwhelmed, and the OCD is off the chart right now. :(

[Serenity1990]

What's the big deal? I am TERRIFIED of putting myself through a surgery and making the wrong decision. Also I have not had the best experiences with doctors. I was left unable to have children and my daughter was left profoundly disabled due to medical negligence.... So I have serious trust issues. That is why I am so scared.[COLOR="blue"]

Ok I guess I can understand that, sorry to hear what you've been through.

If you're intending to be treated on the NHS don't forget it's entirely your choice where you get treated and by whom. I lost a lot of faith in hospitals due to various issues recently, so all my referrals go to UCLH which is arguably the best hospital in the world.

[claireypoo]

Thanks Serenity1990, I am in a weird place where I have to trust doctors (I have lots of appointments with my daughter) but at the same time am terrified of being 'a patient' again. I hate the loss of control, when I am in hospital, the way no one sees you or really listens to you, I feel like a statistic as soon as I go in. NHS or private. It's like humanity V procedure. It all reminds me of the time it all went wrong and I still have a great deal of PTS. :(

I didn't know that you could choose a surgeon with the NHS! Can you choose a consultant too! How? :)