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British Liver Trust
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End of my tether

Well I went through the eradication therapy and for a week I felt better. After I stopped the course, a few days later the agonising pain started again. Now my GP has been changed as the previous one closed down. We are stuck in a rut and we can't get appointments for 3 weeks. This is the pathetic waiting time and there's no emergency ones either.

I had my clinic date today so I thought I'd bring it up with the consultant I see. I hate clinics at times because it's like a lucky dip. You have no idea who you will see. Some are great and some, well they lack empathy and emotions all together and spout some jargon at you.

I saw this really rude and disgusting consultant today. She happened to be a female and I always feel female doctors aren't great with women. It probably is me. Anyway so I tell her the whole saga and guess what? She turns around and tells me that Helicobacter Pylori doesn't give you pain apparently. I explained to her that due to acid you can get pain instead of heartburn. She completely dismissed me and then said she can't do anything as she only looks at the liver.

So what happened today? I burst out in tears. I couldn't hold my emotions back today. I've had enough! I am not crazy or mental. I go in and see all these different consultants and they all promise me something the next time and nothing is done apart from tests. I couldn't speak to the lady. I couldn't form words because I was crying so hard. She had no remorse. I got angry and said I just wanted my prescription and left without saying thank you to her. I wanted to discuss these horrible tremors that have gone worse but I left it.

I'm not one to cry in public and usually quite composed. But gosh today nothing could hold me back. I went in to give my bloods and I was crying and talking to confirm my details. The nurse was so kind. She closed the door and let me just cry out loud and was disgusted by this doctor. She said that was wrong and got the manager to come in and quickly arrange for me to see another consultant. Bare in mind that I had waited over an hour for my appointment as this doctor misplaced my label and saw some other person.

This doctor was kind and gentle and he requested a test to check my amylase level. He said he didn't want to override the gastro doctor I saw privately and wanted to speak to him before handing out antibiotics and that he will call me next week to discuss it further.

He was very kind and it made a difference. I took his name and I hope I get to see him again and not that other lady. I know her name so I'll avoid her.

I feel fed up guys. I'm losing the will to live with this pain any longer. At times I'm wishing it will all end. I know longer want this painful life. If I can't be pain free then I definitely do not want this long life. I can cope with exhaustion and many other pains and side effects of medications but not this pain.

The second doctor reduced my prograf level too.

Thank you for listening or reading.

Regards

Jahida

8 Replies
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Hi jahida, I just wanted to reply to let you know that I understand your frustration at what you are going through, I can feel the desperation in your words, I wish I could offer you some practical advice but I think you are doing everything that you possibly can to get yourself some answers and some help, I had helicobacter about 16 years ago and the reason I went to the doctor was because of stomach pain every time I ate, do you think maybe the helicobacter hasn't been successfully cleared, I really wish I could be of more help to you but if you ever wish to chat please feel free to message me anytime, take care of yourself xx

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Finally someone with some experience. How long was the eradication process for you? I'm guessing my suppressed immune system plays a part in it in that I may require longer course of antibiotics? I had one week's worth and I felt so much more better after 4 days minus the antibiotics side effects. It was horrific but I'd taking anything over pain.

May I ask where your pain was? Mine is in the upper gastric and chest region. It is literally squeezing the life out of me. Was your pain this bad?

I really hope I get some answers and feel better and happier soon.

Thank you so much for you reply. It's good to speak to someone that actually has had an experience although it isn't a nice thing.

Kind regards

Jahida

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Morning jahida, I don't remember too much about it but I do remember the pain, i can't really describe it but it was upper gastric region and you do describe it well, it kinda a took over my life for a bit, the treatment I received was three different antibiotics and I'm sure it was for a week, how are you today, xx

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Sorry you are in so much pain. I've been like this for 2 years. One consultant said it was muscular!!! I now have so much pain, liver pain, every joint, muscle and bone, I see my consultant on 6th august and want to know which way it's going!

Hope you feel better very soon. Lots of love Lynne xxxx

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Lynne I'm sorry that you are going through all of this.

Is this because of your liver disease? I hope you get some answers. Please do be vocal or if you are like me just start crying. I'm not such an assertive person. I've been filled with far too much of a soft nature and politeness. I am vocal but I can only go so far. I wish I could be more loud and firm. However yesterday I just felt like I wanted to collapse.

Please do let us know what they say!xxx

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Thank you so much. My husband and son will be with so that will really help. I'm so fed up with it all now as you can imagine. Please please take care. Lots of love Lynne xxxx

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Hi Jahida,

Can you contact PALS (Patient Advice and Liaison Service) at your hospital?

They can help investigate concerns you have about your treatment and advise you about the complaints procedure.

With regards to your pain, can your liver specialist refer you to the hospital pain team for urgent assessment?

We hope you get some answers soon and the help you need,

Best wishes,

Rebecca

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Hi Jahida

As BLT Rebecca says ask to be referred to the pain team they will help.xx

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