Really lost - Seeking some advice - Oesophageal Patie...

Oesophageal Patients Association
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Really lost - Seeking some advice


Dear all,

I have some strange symptoms for 3 years now and doctors seems incapable to find what is wrong. Would love some advice.


- I have had these one off strong contraction in my chest that freaks the hell out of me. They happen at random times, although I noticed they happen more around meal time. They are very surprising and freak me every single time.

- After, I tend to have some kind of stomach gas

- While standing, sometimes I would feel discomfort in the stomach/oesophagal area which triggers anxiety and sends my heart racing

- Tired all the time since this started

- Tenderness below breastbone

Tests I had:

- Heart echo/holter/stress test (all normal)

- Upper GI endoscopy: Showed some mild oesophagitis

I was put on PPIs. Tried 2 weeks and dumped them because they made me feel even worse, unable to digest with food sitting in my stomach for hours.

Anyone had something similar? I can't decide whether this is the oesophagus, stomach or heart and am tired of the doctors who can't tell me what is wrong with me.


20 Replies

hi , i am sorry to hear you are having such a hard time getting a diagnosis ,it seems you have had a few tests already so thats posative . but i recognise the frustration of then still having to live with the symptoms and trying to find the answers by searching the net . its taken me fifteen years to get my diagnosis. i did so by searching the net . you will get there .i fully understand how scary the symptoms are too , trying to track down which part of our body is playing up isnt always straight forward and all we can tell the doctors are the symptoms as we feel them , then hope they interpret them correctly . perhaps you could ask for a barium meal test . a thick shake you drink while they take x rays . it shows how the liquid travels from your mouth to stomach so can eliminate more conditions .

if you know something is not right with your body just keep going back to the doctors untill you get an answer .

wishing you all the best .

Hi feebee. Thanks for your kind words. I will ask my doc about the barium swallow. I so want them to find the culprit and get on a normal life!

Hi i am at hospital sometime when i get an appointment i wonder if i could request a barium meal test. My doctors just give PPis which i tried and didnt help me also had endoscopy and everything was fine ! even though i have acid attack every night. Everytime i eat i bloat up too. thanks for your post

i dont see why you cant request a barium meal test , i did and was told no by gp no one does them anymore , so i did pay and go to a private ent who said he would have done it on the nhs had i been refered ! so i assume its still available . found my diagnosis that endoscopy didnt , so worth an ask . i know doctors dont like us comeing with our own ideas for diagnosis or tests , but when we have followed all there advice and still have no help or diagnosis for what we are coping with on a daily basis , im not sure what else we are meant to do .

Thanks for reply ! hope you dont mind my asking how much did you pay. I had a quote of £180 for 45mins to go private and that was just a consultation. But im thinking its my health - i work and it may be woth the money for abit quality of life. The Doctors have upset me they told me to change my diet i have , stop smiking i have , raise my bed , take PPIs , endoscopy , limit alcohol , loose weight - I lost loads years ago without trying ! and I still wake up every night with acid. Whos did you go private with a stomach doc ?

hi , no i dont mind you asking at all . i went to see an ent ear nose throat consultant . i was determined to start at the top of my body and work my way down , untill i found the answer to my symptoms . fifteen years was long enough .

initial consultation for me was£ 200, it lasted about half an hour , i had a small camera down my throat that cost £50 . i then had to have a barium costing £343 then £100 for consultation for results. because they found the problem with the barium straight away i supose i was lucky .but then they wanted to do a ct scan to check it was what they thought . at this point i had to go through with it as i needed to get a final diagnosis . this was £553. and another £100 for the final consultation . so its not always just the one consultation .but you could be lucky and have it diagnosed straight away . the whole process took three weeks .as you say its your health and how its ruining your life not to mention the stress it causes not having answers. we live a very quiet life and on a very tight budget and our once a year self catering holiday in scotland will be on hold for a couple of years . but i had no other way of basically proving to my gps that i could not swallow food . now i cant seem to get them to understand how little i can actually eat even showing them a picture !

Goodness wonder what the GPs problem is? maybe they dont know enough about these conditions. Yes i dont know who to start with maybe a nutrionist or someone who deals in stomachs ! I bought some slippery elm to have with my tea and also some Liquorice root, I will try anything but none seem to help. I get less severe reflux with turkey so i often have it for tea. I have been taking a cup of water with lemon and ACV in it when i wake up i drink it and try and go ack to sleep - 1 night it worked but not since :(

i would suggest if you are going to spend money perhaps see someone who will give you a test ie the barium to discount other things . i think if you have had a barium and endoscopy those two would show most upper gi things . then perhaps go down the nutrition route . you should be able to get all this on the nhs if you ask then they would actually have to refuse you and i hope most gps are better than the ones i dealt with . i really need to change my gp but with letters form diatians and things i dont want any more to get lost . i know what you meen about trying anything , its all we are left with when we dont have answers .

I know had endsocopy and didnt show anything. Hopefully if i get the baruim that will show something. I have seen numerous GPs and and dont feel im getting anywhere ! although at least they did send me for the endoscopy. I know there is something as its 3am and im red hot and my stomach not settled and feel sick. Thanks for your reply again

focused1 in reply to louncolcol

Make an appointment to give your update .I kept diary which I took to my GP appointment . After I had bored them senseless about 3 mins of garble I asked for further meaningful tests . This worked then see the experts at the hospital .

focused1 in reply to feebee1993

I am amazed that some feel they have no option but pay for these tests .I didn't . At my GP surgery you rarely see the same person twice . I had no time off work and told them this but said I needed to know what was going on as this wasn't the real me . I went for tests , saw people at the hospital after them , then sent for more . When you have the opportunity I would ask for follow up appointments after these tests or they are done in vain . Ask what the alternatives there are to long term meds which in most cases aren't the answer . People at the GP surgery couldn't give me test readings or answers so I asked politely to see the experts . Finally I got the chance to decide on surgery.

Hi I'm a big believer in we know when something isn't right with us and sometimes it's difficult to get others to see or believe it, but you know your body better than anyone. Be persistent if this is the case, although anxiety can play a big part. I would suggest going back to your doctor and trying a different PPI there are lots of different products on the market, they always start with the cheapest. Good luck. And try not to worry.

Thanks for you message. I agree about us trusting ourselves in feeling right or not. I also think that sometimes some small things can have a disproportionate impact on health. Anxiety, or GERD don't seem to be much but may cause some dreadful symptoms. So I am hoping to find some people who walked this walk before...

Hi there , I can not get away with PPIs either. They didnt help me at all. like you - I am tierd all the time too and doctors just send me for endoscopys at the hospital and they tell me there is nothing wrong! well im grateful i dont have cancer or anything but every night i get acid right up into my mouth my stomach is always making noises.

Im always shattered going to work everyday. I was going to go private but its £180 just for the consultation. I have changed my diet, raised the head of my bed. Stopped smoking and drinking and i still get it.

I dont know if yours is similar to mine but i drink lemon juice and apple cider vinegar when im getting acid pain thats a relief for me.

I fully understand. Work is a daily struggle. I was looking for lpr and it sounds to be a good candidate for what I have. Now I don't believe my LES is the only culprit. I think there is an issue with abdominal pressure and this may explain why it is so much worse when I am stressed. I probably tense my abdominal muscles unconsciously. Re doctors, I have lost all faith. Not sure they are worth the money for the pathologies we have... I am trying Gaviscon advance. I am quite intrigued by the raft forming alginate concept. Apple cider vinegar doesn't seem to help unfortunately. Ppi s are an aberration. Nature didn't give us such a complicated digestive system with such a low pH environment for docs to say : "Nahhhh, you don't need acid for digestion!"

Thanks for reply :) yes agree about PPIs however they do seem to help alot of people which is great. I wish they would help me ! Might give the gaviscon advance a go. I drink it from the bottle on a night. I am a worrier and prone to stress so i exercise and mediate to stress bust ! because i know they will be no good for the acid. What is lpr you mentioned ? I have had this fro 4-5 years now and i do wish it would go away ! i have raised the head of my bed and i have my tea as early as possible 5.30pm. I still get the reflux but not as severe as say i have a mcdonalds meal at that time i would be crippled through night.

LPR means laryngo pharyngal reflux (silent reflux). It is a pathology which doesn't involve the classic heartburn symptoms but is caused by the reflux getting into your air ways. You should Google it up. Quite interesting (but hard to manage). And go meditation :)

Thanks im often short of breath too but it does clear for me - I am just busy tearful and tierd through the day. I hate waking during the night. I use to enjoy a drink but its not worth it for me now. A hangover and a night of the acid is just too much ! AT least i have minus the hangover :)

hi just re reading these posts . i posted yesterday asking about oesophogeal spasms and have had a couple of very helpfull replies ,one about the spasms which is very reasuring . i have not really worked out yet who sees what on here ,but perhaps if you search recent posts or click on my user name the posts may come up for you .

You need to be persistent especially with NHS crisis forever in the news . You are as important as me and everyone else . I have hiatus hernia which was diagnosed after an awful cough - more than 6 weeks lead me to reluctantly see my GP . I was sent for 2 endoscopes , barium meal and 24 hr monitor meanwhile taking 2 , then 1 lansoprazole tablets daily . This started Dec 2016 and next week I am having surgery as long term meds aren't ideal and don't make the condition any better . I can eat what I want but feel constantly bloated and I feel I have swelling just round my breastbone . I cope with mild indigestion and awful wind which working full time in an enclosed space ain't great . I am 57 years old and feel weight has piled on due to fiddling about with various foods , that bloated feeling . My BMI isn't great but that is complex as my son who weigh trains and is super fit has a BMI which is off the scale but is muscular / lean in appearance .

I am hoping after surgery to eat a healthy balanced diet and do sensible regular exercise . At. 80kg and only 5 ft 1 there is work to be done . I am having surgery as long term meds aren't the solution and this op will hopefully put me on a path to better diet and retirement in 5-10 years .

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