GP visits

[Yvonnejulie]

Don't know whether to laugh or cry when I have to visit the GP, never see the same one twice, last time I was told my liver pain was to do with my hip and I needed pysio and this time I get told I have indigestion and to take antacid! I give up!

[Jo_Br]

Aww hugs, having seen two gastro guys who had no idea, one hepatologist who said the pain was not something she recognised as PBC and mine can be dull to breathtaking, my latest Hep has said its common and I am to see him to sort out all my meds and will be moaning about it. Have you got a bunch of leaflets you can hand out to GP's, nurse practitioners etc. I have a few in my bag for all occasions hehe. My GP took one home and read up and did further research. I now won't see another one as its a pain having to explain my pain and have somebody tell me its something else.

The leaflets are available on the PBC Foundation as download and they can post them too.

[Yvonnejulie in reply to Jo_Br]

Thank you, I will download them, I'm under a gastro at the hospital and one of them said it was constipation! Thankfully she wasn't the top doctor there, I will print these off and give them out I think. The doctors don't seem to put pain and pbc together but the pain is very real, sometimes it is so painful and bloats and makes me sick and the hotness makes me want to pass out and other times it is like a niggle, I describe it like I've been in a boxing ring and feeling bruised.

[Jo_Br in reply to Yvonnejulie]

Are you UK based? Yes in a ring I say run over by a steam roller after a bout of pain that lasts.

[Yvonnejulie]

Yes I'm in the uk, I had a bad one this morning from 4 a.m but I have over done it at work, thankfully had today off so I have managed to sleep most of the day as it really tires you out after a big flare up doesn't it. Are you in U.K.?

[Jo_Br in reply to Yvonnejulie]

Yes I am, the reason I asked is a hepatologist may be a better person to see if its possible depends where you are. I have despite it being a faff swapped to a hospital 36ish miles away and although only my first appt, he confirmed a definite diagnosis (mine was pointing to other things as well) plus apparently there is a PBC Nurse who I can call for any queries once in between appointments.

The gastro people have a general knowledge of PBC and autoimmune diseases along with their bowel etc speciality. The gastro man was obssesed with my bowel, I kept saying never had any issues but he nonetheless put me on steroids for my bowel. I googled they were for Crohns, I never took one a) as no need and b) I felt they may put pressure on my liver. I was worried that I would be shouted at, but luckily the first Hep (she retired) said "Good, don't take them they are needless."

I asked my GP to refer me to a Hep after a chat with the PBC Foundation.

I am shattered my liver has ached and pained all day, but I care for my Granny so not a chance of a sleep rest today but not moved too much. My bed will be so well earned.

[Yvonnejulie in reply to Jo_Br]

Thank you for that Jo, I am in Bedfordshire, do you mind me asking where you are? I need to perhaps find out where a Hep doctor with good reputation is based.

[Heleno in reply to Yvonnejulie]

Where abouts are you in Bedfordshire? I'm in Bedfordshire too but see a Dr Carter at Lister hospital in Stevenage. It did take him a long time to diagnose me, kept asking if I itched (which at the time I didn't) but never asked me about fatigue which I have had in bucket fulls for about 10 years! Only diagnosed after a 2nd review of liver biopsy. I don't see him that often but he does listen and I can call his secretary in between appointments if I have any queries.

[Yvonnejulie in reply to Heleno]

I'm in Leighton buzzard so I go to Milton Keynes hospital, I see a gastro doctor.

[Heleno in reply to Yvonnejulie]

Dr Carter is a gastro doc too. Maybe see if you can swap hospitals but not sure if that's possible. I have option of Bedford or Lister due to being on Herts / Beds border, only go to Lister as it's on my route to and from work

[Yvonnejulie in reply to Heleno]

I did ask my GP to go to a different hospital but she said it could take a year to refer then I would have to wait for that hospital to dx me too so I'm not sure what to do.

[Heleno in reply to Yvonnejulie]

I think it's still worth asking to be referred to another if you aren't happy with the ones you see. It wouldn't do any harm even if you have to wait a year. I only see him every 6 months and this has now been reduced to yearly due to liver results coming back in line but now I am in the system I can request additional appointments if needed.

[Jo_Br in reply to Yvonnejulie]

I am not far from you, in Cambridgeshire, you are nearest to Addenbrookes if looking for a great team. Ask your GP to refer you, they have PBC specialists and George Mells is who I see only one appt and I am further along than I have been in the first 10 months. I asked my GP to refer, although the first hep did too.

[Jo_Br in reply to Jo_Br]

I looked at what I may need in the future, if necessary hoping not. I needed a specialist in the disease and also to be in a place where transplants are done if needed ever. See a hep if you can even if you have to wait.

[Twinkle26]

I had hip pain and was given steroid injections into it to enable me to exercise lol

Having said that I did some physio for few weeks and only get light pain now the injection really hurt.

I get problems with knees now lol

[teddybear7]

It's quite amazing how much professionals differ. My normal gastro & gp are brilliant but I saw a stand in gastro last year who was awful & very dismissive said I hadn't got a poorly liver & made me feel like I was wasting her time didn't leave her a leaflet cause she asked me if I read the bear facts magazine. So had the air of having all knowledge. I check with the hospital now as it's a long time nearly a year apart to be waiting to be shot down by a nasty piece of work. So I make sure it's the other one I actually see. X

[Shulsey]

Not sure how I can be of any help because I live in the US. But, I'll give it a whirl😊. I have a GI Dr close to home who referred me to a university heptologist three hours away who is very educated in PBC. It's so worth The drive to see him because he's able to translate things on my level😁. The way he explained the "liver pain" (URQ) is that our liver has zero nerves so it isn't our actual liver that's painful but it's the area around our liver due to inflammation. When our liver becomes inflamed the area around it is becoming smaller so we feel the pressure or pain from that. It just drives me insane when I hear of medical professionals trying to blame the pain on whatever they blame it on because they honestly have no clue what they are talking about. Why can't they just be honest with their patients & tell them that they really are uneducated in the topic of PBC. Or at least do some research or refer you to someone who knows about our problems. Professionals who are too egotistical to admit they haven't any clue have no business in the health care fields. Just my personal opinion for those Dr's.

STAY STRONG❣️

Shannon