Help
I know I'm not a regular here but I really need to let off some steam.
Nearly two years ago now I went into hospital with severe/chronic RUQ pain. It was pretty much assumed I had gallstones, but I didn't. I had an ultrasound that showed gallbladder inflammation and (according to one doctor that has since been denied) a "fatty mass" right next to my gallbladder. Surgeon wanted nothing to do with me (must've been missing the golf course lol). I booked myself out because they were getting nowhere and I was going to lose my place at college if I didn't get back. Since had HIDA scan which was normal but showed fatty liver (today's blood results back that up as I have raised liver enzymes).
I was referred as an outpatient to a gastro doctor, and they said it was probably "just" IBS, and possibly biliary diskynesia (sp?). They put me on amitriptylene but took me off it after it's initial mild results wore off. I was told that unless I had gallstones or developed them, they would not remove the gallbladder as it would not solve the pain, something to do with high recurrence and what parts are left behind (Sphincter of Oddi?). They said I would still get the pain even if they remove it. They said this was all "probably just IBS". Told me to avoid stress, impossible as a mum and full time student. Their approach seemed to be that if it was stress related, I should sit at home and do nothing forever to sort it rather than them having to do something about it.
Since then I have not heard anything - I have constant dull RUQ pain that feels like a burning apple behind my ribs, and radiates up my right shoulder blade, also causing recurring hiccups (painful). That pain is always there, but there is another kind of pain that is sporadic, and occurs throughout particularly bad spells, which is v. sharp, stabbing pain. These stabbing pains tie in with spells of about 2-3 weeks of more severe pain, often alongside fever. Pain is bad enugh to cause fainting and vomiting. GP has prescribed antibios each time, these initially help - I have just finished a course of metronidazole and cefalexin which initially started to help but the course finished and the pain came back. All my pain is always in the same place, it does not change, ever.
I was initially put on Tramadol for general pain relief, which worked at first when used alongside paracetamol, then wore off. It has never been strong enough for the acute pains. I was then given Diconal, which works well but completely dopes me out, meaning I can't have any pain relief through the day (as I am a mum of 3 and also in full time uni). I can't function mentally at uni on painkillers and therefore through the day I have to put up with the pain, which is bad on a normal day but not possible when I have the "flare ups". Today the GP has given me Temgesic. He is sending me for another ultrasound and then says he will "take it from there". I am so frustrated because it seems that the longer this pain goes on, the more they expect me to cope with. I feel if today's level of pain had a sudden onset, they'd have had me in hospital but instead they write me off with PKs and send me home. I also feel that they don't seem to see that I have a degree to do, I can't cope like this any more. :(
I was wondering if anyone had any experience of how to get things moving faster (obviously I'm UK based) and also if anyone could shed any light on this whether in terms of this actually being IBS (which I don't believe any more) or something else. Any support or pain relief ideas much appreciated too. Srry if I'm completely in the wrong place, but I joined here when they told me it was IBS and while I hope noone's feeling like I am tonight, I kindof think some of you do. :)
Thanks for letting me get it all out,
Kathy
xx
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