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Hello I am 29 and a female from Cardiff UK.
In 2011 I was diagnosed enlarged choldochal cyst because I was rushed to accident and emergency because of severe abdominal pain and vomiting, had blood tests came back normal, had a ct scan with dye injected they found a 'mass'' few weeks later that's when I was diagnosed. After much discussion from a liver specialist telling me there was a risk of developing cancer which could affect me much more when I get to my 40's and to prevent this it was advised to remove this cystic enlarge bile duct, after much talking and decision making and second opinion and it would be best to have the surgery to remove it which I had in June 2013 I had major surgery for choldochal cyst removal
( this involved removal of the gallbladder and bile duct as that was cystic) had this reconstructed from my intestine to the bile duct this is now where my bile now travels, the operation went well apart from having a very long internal stitch which it was never explained to me why this internal stitch was there all I was told that this was holding the area together.
No problems apart from last year summer 2014 I started to notice every time I ate something or drunk something I would get a pain in my stomach area. I put this down to stress working 11 hour shifts at work and not thinking anything serious but this kept happening even when I did or did not eat or drink anything.
And I ignored this pain for a very long time.
Last year September 2014 1 year and 3 months after the surgery I had the internal stitch out which went well. No problems.
In November 2014 I started getting alot of symptom's -
Tearing/burning - pain in chest left side leading to the abdomen near the stomach area and middle of abdomen going towards the belly button area and lower area of the abdomen pain near where I had previous operation this pain is also in the left of the back and left rib. Also burping for no reason
This pain is very painful and unbearable at times and it is constantly there and is getting worse. Abdomen and chest is tender and when pressed and hurts when I breath in deeply it hurts alot same at the back.
Pulse rate seems very fast when I stand up can feel this in my abdomen in the middle and left side.
When I eat of drink anything within a few seconds I get pain in the stomach left side of rib and left side of back and down the tummy and middle of the abdomen
This pain is so painful that it makes me not want to eat or drink anything and if I lie down on my back flat on a bed for example I can feel the pain in my back.
There is also bloating in my abdomen.
There is also alot of noise.
Muscle weakness and numbness - in arms and hands, legs. When resting or lying down this tends to worsen and can notice it more so in the arms when resting or trying to go to bed and when standing up more so in my legs I also feel my veins hurt in my legs, I also get heavy legs feeling at times.
Tiredness/fatigue - I have no energy I am very tired when walking or getting up to do simple tasks like wash myself or go put the washing on the line. I am very tired while standing or walking and have no energy so much so I have to keep lying down or sitting down because being on my feet for short periods of time makes me feel unwell and I feel very faint lightheaded and dizzy and get shortness of breath and I feel weak.
Insomnia - either no sleep for days at a time or very poor sleep little as 2 hours at times this goes on and on.
Electrical tingling - in my head and neck some numbness in face both sides but mainly felt on left side.
warm swooshing sensations in my blood around my body feels like my blood is not circulating around my body properly.
Feeling sick or getting sick tight throat sensation which gives me problems sometimes swallowing saliva or eating or drinking.
Mental state - feeling like I am becoming stupid, alertness and concentration is not there, speech problems and communication problems and being able to understand is going and getting confused at times and generally feeling i am a fog like state of mind - I feel my brain is not functioning properly and it feels like I am not getting enough oxygen to my brain.
Clumsiness - when I am on my feet I am dropping things, walking into doors walls or another person loosing my footing.
Diarrhea- constant, orange stools, very recently stools are smelling they are orange and looks oily I was getting constant diarrhea for months no matter what I ate but now they seem more solid still smells and is an orange in colour but im barely going at all compared to 4 to 5 times day of going diarrhea. ( I also did a home bowel test kit a few weeks ago to test if there was blood in my stools and it came back positive)
I also got the sensation soon as I ate something I would need to go for a proper toilet, now in the last week this has now stopped and now I can barely go to the toilet and when I do try hardly anything is coming out.
Temperature - is up and down constantly feeling very hot especially during the night or hen going or trying to go to the toilet and after urinating I seem to feel warmer, then at other times i am very cold my hand and feet but sweating from my feet while feeling very cold.
Red blood spots by the looks of it has recently appeared on my thighs lower back and my legs.
There is pain also seems be near my collar bone areas and parts of the chest and near and abdomen leading to the neck and head, this pain is hard to explain but it feels like it is my veins and arteries and feels like I have a blood flow problem.
I have been going back and forth to my GP sometimes 3 times a week because my health is getting worse, blood tests have been done liver function full blood count, kidney function tests, thyroid All come back normal.
My GP has referred me to a neurologist and that is an 8 month wait, I do not think it is a neurologist problem at all.
Last week I went to accident and emergency after speaking with an NHS direct nurse and having a full assessment she advised me to go to A & E at the health hospital.
Went there was there for around 5 to 6 hours they did blood tests all came back normal. They injected some medicine which I don't recall the name but it was to help my stomach lining to stop me from being sick as I was vomiting for 3 days. (when they put this in my veins it made me feel intense pressure in my veins and head before it started stinging my stomach) I asked if that was normal to feel like that the nurse said no but everyone is different.
After speaking to a surgical doctor who didn't tell me what he specialised in he was rude, telling me they are not going to do any abdominal scans when I had asked as my blood has come back normal and was comparing me to a previous patient, and telling me '' it would be bad medicine'' to get a scan of my abdomen and because of my age he isn't concerned. I am absolutely frustrated to say the least, They sent me home they didn't do anything apart from tell me they will write to my GP and ask for me to have my stomach procedure done which involves having my stomach looked at by a camera and to get that arranged by my G.P
I saw my GP 8th May 2015 explaining to her my symptoms again how she should refer me to get my stomach looked at, and her response is I'm not concerned about your stomach gave me some more sleeping pills to help me with my insomnia and sent me away.
I have been off work for 6 weeks because of my symptoms are affecting my everyday life, I feel very ill, and despite this going on since November 2014 I am getting very little help by the GP despite going up there sometimes as 3 times a week to try and get listened to.
Most of my pain is dismissed and all I keep getting told is my blood tests are normal and my GP just gives me medication for some of the symptoms and sends me away.
My pain is getting so more worse I am getting so frustrated and desperate to get answers.
The only medication I take is bile tablets for my bile I am on those for life, and recently because I am convinced I have something wrong with my blood flow and my abdomain I have been taking aspirin to thin my blood and this does give me some relief for short periods of time but not much.
I am 29 as I say and there is something that is going on. all my symptoms are getting worse piratically the symptoms with my blood and abdomen area.
Nothing is being done well very little the longer this is getting left the more worse I am feeling.
I am feeling very frustrated that I am not getting any answers every time I go back to my GP she rights me off because of my age even after explaining to her I had unusual surgery she doesn't seem to want to refer me to see any specialists I see her tomorrow as she has told me to write a list of my symptom's and come in to discuss it. Which is what I've been going through with her since November I am just not being listened to.
I am considering making a formal complaint and will seek advice through the CAB for that if nothing is going to be done.
I can't afford to go private otherwise I would.
I am hoping someone could give me some valid advice as I don't really know what to do anymore.
Thanks for reading would greatly appreciate any advice.
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