I suspect I have a hiatus hernia, but I'm also worried it could be something serious and I won't find out until I have an endoscopy, which could be months away. I really need someone to reassure me that I am experiencing a hiatus hernia, and not something more urgent or severe, and possibly give me some tips for dealing with this.
Some background: I started having breathing problems in October, followed quickly by severe throat pain and swallowing difficulties. Several visits to walk-in clinics and the GP later, after misdiagnoses with asthma and mumps, a doctor finally suggested I might be experiencing acid reflux. At the time I was generally only having 'silent' laryngopharyngeal silent, including a sore throat, lump in throat, and trouble swallowing. My symptoms didn't improve with 60 mg of Omeprazole so they began treating me for h. pylori (without confirming it with tests) or possibly an ulcer. Eventually I started having the more recognisable symptoms of acid reflux, although they primarily seem to be concentrated below my breastbone, right at the solar plexus. Eventually I was switched to Lansoprazole, 30 mg 2x a day, and although it's worked better than the Omeprazole my symptoms have never entirely gone away and recently seem to have gotten worse. I've been eating a very bland diet for months, without effect. No caffeine, no alcohol, no tomato sauce, no chocolate, very little sugar, no... just about everything. During a 3 week period at the very beginning I ate nothing but toast, plain whole wheat pasta, and bananas and drank nothing but warm water and still my symptoms didn't improve.
Finally, at the beginning of January my GP referred me to a gastroenterologist, suspecting it might be a hiatus hernia. My pain has been escalating recently and I was very eagerly checking the mail everyday for the appointment letter. However, during a confrontation with a very inept, awful GP at the surgery today, I discovered that the practice may, in fact, not have sent out the referral (the hospital department has no records of my referral, although they explained it could still be processing), leaving me nearly a month behind in my journey to heal this problem.
Because even seeing a gastroenterologist and getting an endoscopy will likely now be months away for me, on top of the three months I've already suffered, I'm becoming a little bit frantic. I'm now worried there's something else wrong with me, like possibly stomach cancer, and that all this medical incompetence will kill me. (These are the same doctors who prescribed me two drugs with a very serious interaction--irregular heartbeat--and then dismissed me as 'overreacting' when I turned up at their office with.... heart palpitations, dizziness, fainting episodes. I only discovered the interaction myself days later when I was checking the interactions on my meds to see if I could take a decongestant. Stopped one of the meds and all the dizziness and cardiac problems disappeared. Anyway, these doctors don't exactly inspire confidence.)
SYMPTOMS
- pain and difficulty with deep breaths (My partner pointed out that I 'raise' my shoulders to breathe. If you hold my shoulders down and try to get me to breathe just by expanding my lungs outward I sputter and cough and can't get a deep breath)
- burning pain concentrated around solar plexus (under breastbone), usually worse after meals, somewhat improved by the lansoprazole: PPIs tend to reduce the burning but not the general pain
- soreness and tightness in throat
- muscular pain in chest, left armpit, left arm, left hand (I don't think this is cardiac: i've had it for months and the pain is worse when I move, press on it.)
I've had a blood test (i'm iron deficient but not anemia), a chest x-ray, a stomach x-ray, and a lung capacity test, all of which were relatively normal. Would the hernia have shown up on one of the x-rays though? That's my concern. If I don't have a hernia I don't know what this is: it seems more complicated than simple GERD.
I apologise if I come off a little frantic. I'm frustrated and exhausted and a little terrifying. I'm seriously considering shelling out the £1,000 or so for a private endoscopy but apparently you also need a referral for one of those too and I don't trust my GP to actually send it out. Money is tight anyway. I'm trying to get into a new GP next week but with their preliminary appointments and wait times I doubt I'll get another referral out for at least 2 weeks. I doubt I'll have the endoscopy before June. I just don't want to find out months later, when my NHS referral finally trickles in, that I've been living with say, stomach cancer they could have treated if they'd caught it earlier. I'd be very young for stomach cancer, I know (I'm in my twenties) but with months to go before diagnosis my mind is running a little wild.
The relentless pain and breathing problems is also tearing my nerves to shreds. I'm crying hysterically several times a day and I keep having fantasies about injuring myself so I'd have to be taken to an A&E and treated, or at least properly examined. Anyone have any strategies for coping with pain, or the wait until diagnosis? Everyone else seems to have been diagnosed fairly quickly with an endoscopy and I'm fighting even to see a gastroenterologist. : (