Concerned, confused & scared - Oesophageal Patie...

Oesophageal Patients Association

5,418 members2,972 posts

Concerned, confused & scared


Hello everyone

I started with this cough in the early part of January, got it checked out by the DR and was given antibiotics for pharyngitis & a chest x-ray, the x-ray came back normal and the cough subsided.

I am 35 & a smoker but now only socially, anyway so the cough subsided but I started with a shortness of breath and a tight wheeze feeling, the best way I can describe it is when I breathe in it seems the air going to my voice box and then gets stuck there, the better option for me is to breathe through my mouth as then it feels like I am getting air. I have also developed a chronic sore throat, gone back to the dr and he suggested I have acid reflux, been on PPI's for 2 weeks, the sore throat has not gone and the breathing issue neither. Went back and he gave me more antibiotics said I now have laryngitis?!

I am at my wits end, it feels so hard and painful to breathe sometimes no pain from my chest just my voice box, the pain is sharp travelling to my voice box and when I swallow I can feel the razor blades (every day is different), the pain seems to be more on the right hand side of my throat now too.

My throat is not swollen neither can I feel any lumps or bumps its the constant burn when I breathe in and the swallowing....Also I have started coughing more than usual again but seems to be when I am sleeping & I wake myself up with it.

Feels like I am not being heard and fobbed off by my DR, I requested an ENT referall and he declined said my symptoms are all linked to reflux, how long do I have to wait for this horrible feeling to go, nothing seems to be working!!!

My fear is the longer this goes on the longer I am causing damage (if it is reflux) or if this is throat or thyroid cancer no one is taking me seriously, I feel like breaking down in tears everyday when the pain starts....

Any advise please would be welcomed...

26 Replies

If it is acid reflux the PPI should have more effect. If it isn't I would ask your doctor to switch you to another type. I had to try two or three different ones until I found one that suited me. Best wishes, James.

Kayanne1980 in reply to ccfc

Just as I though PPI should have worked by now reducing the acid, however last weekend I suddenly shot up in bed and felt the acid choking me by my voice box, I coughed and coughed just to get the 'sick' out, was so scary, I tasted the same 'sick' taste last week too, I would be so much more happier if they would just refer me for a scope down and have a look if there are any tumors or masses...

Seems to be controlling my life right now

Have you thought about seeing another Dr or need to be listed ed to. Ask for an endoscopy and be persistent. It's no good being scared like this its ruining your life.

I am going to go back tomorrow and see another dr, the ppi is not working. I cannot stand this persisent sore throat. Surely the sore throat and stinging should have been relieved by now seeing as though ppi should block acid!! Its common sense though, just wish my dr would see it that way!

There is another helpful test that I had to diagnose reflux. It's called 24 hr manometry. A tiny tube down your nose to your stomach measures the acid level over 24 hrs and sees how far up the acid levels go.

After I had that the doctor's attitudes totally changed, because just like you the reflux was so bad it was waking me at night choking. Not only did they take me more seriously and organise an endoscopy, but prescribed a regular PPI.

PPI will stop it being acidic, but wont stop it choking you.

There are lifestlye alterations you can make to try and strengthen the sphincter at the top of your stomach. From losing weight, sleeping with raised pillows, smoking and drinking. Also what and when you eat are important.

The only optiob after that is surgical. To repair an existibg oroblem such as a hiatus hernia or to strengthen the sphincter witj magnetic beads. I'm still looking into this option.

Finally - when we get in our 30's (I'm your age too) we all start to worry more about our health. How we cope is down to the individual, but it's important for you to find a way to manage your worries. For me - I had to face up to my terror and go back to the doc and request the investigations despite worrying about what the results would show. I did some relaxation exercises. And I made some improvements to my lifestylw. It helped me get ahold of my feeling of terror though it isnt gone it's managable

Good Luck!

Stop smoking.

I have.... Cant put it down to just smoking socially and in constant be like this forever surely!?!?

Stopping smoking is a must and I am glad you have done that. It takes a few months for effects of smoking to clear from your system and for you to start to benefit from this change. In the initial stages it is common to feel unwell as your body adjusts to it's "new "regime. Most, who give up (and I was one of them) report that they get coughs, colds, chest aches etc.

I would seek a second opinion from another doctor. Insist on being referred. That is a right that your current GP should understand and honour without any uncomfortable or awkward meetings. They only need to write a single paragraph letter.

Failing that, then ask for a "Private referral".

I waited six months and six GP visits before I insisted on being seen privately. By this point I had gone from being uncomfortable swallowing (food would go down but not into my stomach) to bleeding internally and losing weight dramatically. My GP still insisted that I had indigestion. One visit to an upper GI consultant saw me diagnosed with Cancer.

All the medical people who I have dealt with since were amazed that I waited so long to get a "second opinion"? Well I was brought up to trust Doctors and Policemen. My mother was a General Hospital Matron. So it was alien to me to question a Doctor. I finally did so when the bleeding was stopping me working (not a good look for a tailored suit and a train seat). Sad but true.

All of my wonderful medics since have been passionate about the need not to smoke. I now get that. I just wish I had done so earlier in life when I was a "social"smoker ;ˆ)

that makes me very very scared, scared this could be growths in my voice box that you cannot feel and only a scope will reveal ...... throat cancer at 35 is rare BUT it does happen..

I feel so let down at the moment by all of this, its the difficulty breathing too that the dr seems to be ignoring.

Off to see another one tomorrow & insist for that ENT referral, but like you say if all else fails a private referral it is!

How do I get a private referral though?

"How do I get a private referral "

Are you in the UK?

If yes then simply ask your doctor the give a referral. They may charge you (usually £10 to write a letter)

Do you have medical insurance?

If yes? Then advise them that you have requested a referral. Your insurers will normally provide you with a list of their registered practitioners. Choosing from their list will ensure no issues with payment etc.

If you don't have insurance? You then need to ask your chosen doctor for their fees, which you will have settle yourself. Initial consultations usually will cost between £100 > £300 dependent on what is being done.

You can simply ask to for a second opinion from another GP. That will not cost much (if anything). Explain your fears to your GP. They should be sympathetic to your concerns. It is worth remembering that most GP's get it right and most patients get it wrong ;ˆ) It is winter and it is cold. Chest/throat complaints thrive in this weather and you may simply have a seasonal complaint.

The big scary stuff is normally accompanied by big scary symptoms that your GP will be well versed in.

I say again. Tell them of your fears. They should be able to to respond to this.

Good luck and don't panic. What I have learned is that the internet is full of negatives and positives are often ignored. A sore toe rapidly becomes a "leg off" amputation job. Everybody has friend or a relative that endured that endured some hideous ailment. Most just caught a cold.

Thank you, I am in the UK, I will see another GP tomorrow and see what I can get out of it, if all else fails then a private consultation is what I will probe at, this cannot carry on any longer it is making my life a misery......

I have anxiety and panic attacks which does not make the situation any better at all, I feel worse than what I did when I first saw the doctor.

I was sent for a chest x-ray in January due to the chronic cough but that came back satisfactory, he was very quick to refer me for an x-ray but ENT he refuses *****GRRRR ANGRY & VERY VERY CONFUSED******


Many people using this forum have had all or part of their oesophagus and/or stomach removed with surgery, and I am not sure of your situation.

It does sound like you have a reflux problem with a very sore patch in your throat area.

If the PPI medication does not work, then the natural next step is to return to your doctor. It might be bile, which is alkali, and a different medication would be needed.

Try using Gaviscon, which creates a protective raft (it is called an alginate) and see how you get on with that. You can take it in addition to your other medication.

Try and sleep with your head propped up, because gravity will make it worse when you are lying down.

The GP is right to try the obvious things first, and PPI medication does take a few weeks to have a full effect. If there is no improvement, it really needs a proper examination to sort out the underlying causes of continuing reflux. There is a reference in NICE Guidelines on Dyspepsia & Gastro Oesophageal Reflux Disease to the effect that patients with unresolved reflux symptoms should have a discussion about referral to a specialist service (Quality Statement 5: QS96) but patients sometimes need to use diplomacy when referring to this.

Thank you for your message, I feel so uneasy and on edge it is hard for me to concentrate at work or relax at home, too scared to swallow even because I will just be reminded of the big C word.....

My PPI meds should have worked by now its been 2 weeks today since I started them, therefore I can only assume this is not reflux or the PPI's prescribed are not the right ones.

Without wishing to appear rude, the thing you are clearly doing most of all is panicking.

The first thing you need to do is to sit down and clear your head and set out a sensible course of action. I see from the previous responses you have been getting some seriously good advice, just go a couple of weeks trying to follow a set regime of the new way you are going to go on.

First NO Smoking - Not even one social fag. Second if you don't get this reflux problem during the day and the choking happens mostly when your horizontal change your sleeping habits. (I have a frame arrangement under my pillows and I always sleep almost sitting up on a sort of slope, since the first day I adopted this sleeping position I have not choked once.) And believe me I understand how unpleasant and frightening it is. Next go out and buys some of the proprietary medicines and give them a try, Gaviscon is pretty good for keeping the acid down, but if that doesn't work for you try antacid tablets that you can chew and keep some near at hand when you go to bed.

By all means read and listen to these type of blogs, but don't read up on cancer of the esophagus and those sort of things, you'll cringe with fear. Try a little to think positive and be patient, you have had an x-ray and it has come back clear that is a really good sign. Try your best not to always think the worst, most of us on here are post major operations and so we do understand your fears but to try to maintain a positive outlook is very important for your physical and mental health, believe me when I say I speak from experience.

Of course get your second opinion to try to allay your fears but don't let worry and panic take over your life, fingers crossed all will be well in the future. Keep us posted

Get a referred to a specialist straight away and stop smoking totally.

May I just ask, should the dr at least not have taken a Full blood count & thyroid function blood tests to rule some stuff out i.e. white blood cells can tell alot of things when they are not at the ratio they should be at......?? My mum has hypothyroidism and I have mentioned this but falls on deaf ears!


The normal examination is with an endoscopy - a miniature camera down your throat. The operator would be able to see immediately if there was something that was abnormal physically - eg soreness in a particular area. They can also take samples for biopsy. They then consider any further tests from there. If it is an issue around cancer, this would be the best normal route to establish whether cancer is present or not, with scans as necessary.

I do not know about blood tests / counts at this stage for diagnosing this sort of problem; I have not heard of this (but cancer patients at later stages do indeed have blood tests, and they can indeed tell doctors lots of things for all sorts of complaints. I think a thyroid issue would be amenable to a very direct test, and perhaps that explains your mother's experience)

It is natural to worry until the cause of your problem is sorted out. A septic throat, for instance, can feel much like you describe.

Meanwhile you can try to tackle the things you can influence. It is not easy to relax, of course, but you might think about going to the practice nurse for a well-person check. I know you have received some blunt advice about stopping smoking, which may or may not have been helpfully expressed, but your doctor's surgery would be able to put you in touch with peoppe who can help you through the process, and a well person check-up might be worth thinking about as well.

Thank you, I know I accept the fact about smoking and I have stopped but again there is stopping & then socially smoking you either smoke or you do not.....

Thank you for the advice once again

I will be going back to the DR tomorrow (a different doctor) for a 2nd opinion and take it from there.

Will try and relax more too

Ok so seen another dr, she has ordered a full blood count and thyroid together with liver, kidney etc tests

She did not sugar coat the fact of throat cancer she said we need to wait for the results of the blood tests and if there is anything alarming we will go down the road of ENT!

I feel so anxious, nervous and scared i do not know what to expect now really!

Hi All

Been a far way down now, my bloods all came back normal a few weeks ago, the dr prescribed me Omeprazole but the throat issues are still there. I was not happy with the advice so I asked for a referal to see an ENT consultant, had the scope down my throat and pleased to say there was no cancer found and no ulcers, nodules or masses, what I do have is a very poorly throat that has been burnt with stomach acid. I have been advised that the throat can take months if not a full year to restore itself providing no more acid leaks into my throat or nose.

I am very happy with the result and will pursue changing my diet too including continuing to stop smoking.

Thanks all for your advise and kindness....

When my reflux became very severe I had the burning throat too as well as nonstop coughing. Demand the 24 he oh test from either your go or end drs. I have had barium swallow then ministry test and will have the bravo test Sept. 18th as I cannot tolerate a tube down my throat for 13hrs. Due to rather severe odds. Flashbacks etc. You will get answers that way. Nissan fundekication gave me my life back UNTIL I vomited and now here I go again as I progress backwards. For me irmt feels like battery acid that also burns my eyes. Miserable I know. I had to find my own answers and screamed hallowed and begged until FINALLY a go surgeon listened. Things are complicated for me as I also suffer from achalasia. Good luck to you.

24hr p h test

M o n o g r a p h y test....dang this phone changing my words

Sorry to hear of your difficulties . You need to turn to the local politicians for assistance , either the local county councillor in your borough or preferably your MP and advise them you are not been referred to a specialist for vital tests and scans that are needed to investigate your symptoms . Believe me once local politicians come knocking on Healths door they start to act . Good Luck

Hi there. Thanks but they found the cause after investigation its severe cat allergy that caused this and anxiety. Ive been on inhalers and anxiety meds and I have been better

I’m so pleased to see your update message after all this time, and to hear that you are better. I was reading the thread and wondering how things turned out. Who would have thought it was a cat allergy!! It just goes to show that we really do never know what’s quite going on! Anxiety is horrible, I’ve suffered from it in the past so can understand something of what you were going through. Glad to hear that is better for you as well. You must remember if you get any future worries how this one turned out and take some heart from the fact that while it’s natural to worry about ‘worst case’ scenarios, usually things end up better than that, as they did for you in this case 😊

You may also like...