My story is a long story.Everything was fine with my GP and had a good gp/patient relationship-had full trust in him -until 2011 when he referred me to rheumatology because he thought my symptoms were something else besides my Fibromyalgia.The rheumatologist did nothing except tell me" you need to lose weight and do more exercise".neither this consultant nor my GP accepted that any weight gain was due to whatever is causing my abdomen to be so distended and wa s not diet related nor due to lack of activity.Ever since 2014 when another gp agreed to share my care with my own GP and whose only involvement was to investigate my abdominal symptoms which he failed to do.Ten years on and I still have no diagnoses for my abdominal distension .pain and other symptoms.The GP I have now who has been my GP for 3 years.is OK at times and not others.He has made referrals to several consultants and specialists but not al referrals have happened.ie to Gastroenterology who have decided they know me better than my GP does and in 3 years I have not seen a gastroenterologist despite GP referrals.
My Gp last year said he agrees I have symptoms of several conditions -Acromegaly,Pagets Disease of the Bone,Lupus(which has been diagnosed by another GP in 2021),and Orofacial Granulomatosis.Recently my abdomen has become more distended ,is very sore and lumpy all around and other symptoms include pressure against my stomach and a cough.It was assumed inFebruary that breathlessness ,chest pain and fatigue was due to angina.No tests were done nor any other possible cause considered
The only reason my GP did not make diagnoses was because "blood tests and scans " were wrongly confirmed as normal.All of these conditions can be sero negative ie not showing positive in blood tests or scans.
I have been diagnosed with Raynauds,disease,Fibromyalgia,Osteoarthritis,Costochondritis,oesophegeal dysmotility,Dysphagia,Gastritis,duodenitis,diverticulitis,Lupus and have symptoms of Acromegaly,Pagets Disease of the Bone,and what I suspect is Lymphoma.I recenly had a "memory block" when leaving the hospital.My GP for some unknown reason put it down to Sleepwalking??? I had no recollection of how I got from the first floor down to the ground floor.
Also have Dupuytrens(?)in my hands and feet which stems from post hand surgery.I have had carpal tunnel surgery on both wrists,
I am concerned I may have Lymphoma .I have a cough,nausea and vomiting as well as other symptoms.I have had several reports of enalrged lymph nodes and glands,Worst of all are my dogs and he changes in their behaviours.My female dog spends most days upstairs and being vey worried.more recently she wont stay in the same room as me.when I enter a room and she is in it she will run out into the another room.
I hav e done a lot of crying because I am scared I do have Lymphoma and it is not being taken seriously.No doctor is accepting that any weight gain is due to my abdomen/is IBS and not diet related.I have never had IBS yet it is still assumed.I am so concerned I am not going to be here for my dogs.
Written by
Purple1968
To view profiles and participate in discussions please or .
I feel worried about you and all that you’re putting up with. I too went to gastroenterology this year and had a scan with good results. Try going back to the gastro dept. and see if you can see someone else in the team. I too have two poodles and live on my own and it goes through my mind too about what if I’m not here. I hope you get some replies and I hope you get sorted out soon.
Thank you for your reply.Because The gastro's refused to see me ,I contacted the Colo-rectal consultant who removed my appendix and informed me that It showed signs of appendicitis.He agreed to see me face to face and said he would refer me to a colleague of his -an upper GI consultant.I recevied a letter today from the colo rectal consultant who said his colleague had referred me to a gastroenterologist as his dept .am awaiting that appointment,I have booked another phone slot with my GP to discuss Lymphoma with him.My abdomen is still achy and sore and this is now radiating right around my back.
I have a few disabilities, my main one when I joined HealthUnlocked being Spina bifida. However, over the years I've been diagnosed with other major problems & it has been a very testing time (no pun intended).
I have been accused of being an alcoholic (I don't drink alcohol 🤦), I actually was diagnosed with acute chronic pancreatitis! Then other gatro diseases!
I won't go on about all my issues as this is about what you're struggling with.
I think that you need to get a patient advocate. This is what I have done recently as I've been struggling with my GP.
Just do an online search for patient advocates who cover your area (I'll be truthful, I didn't realise that these people existed). It is free of charge (they're charity based).
I really think that you would benefit from using a patient advocate, it can be very frustrating & upsetting when the doctors are not listening to you! (I was recently told that it was my own fault that I'm allergic to a certain medication).
Please have a look online at patient advocates in your area, I think that going forward this may be the better option for you.
Good luck & I hope that I have been of a little help.
I am sorry to hear all your woes are not being addressed Purple1968. Here's a few ideas the bloated stomach could be many things including the less worrying IBS, we all have memory lapses now and again especially when under the stress of hospital treatment. You don't mention if you take any pills for pain ect which can in some cases cause symptoms like other illness. I have a lung condition and many pills cause the symptoms to be worse. in respect of your pets they often sense illness in their owner, so I would be trying all sorts to illiminate your own ill feelings if possible, because you seem to have a catalogue of illness and are now suspecting Lymphoma. You mention three illnesses that cause pain and severe tiredness i.e Fibromyalgia, osteoarthritis, costochondritos. So how do you cope with them I only have arthritis and the pain wears me down some days and many people even myself worked with the illnesses. My lung condition does make me tired too. What about asking your GP for anti sickness pills see if that helps one symptom. Pain is a personal thing what works for you depends on lots of things, lose of any weight will help the fibro and osteo I speak from experience only a few pounds can improve how you feel . I must go have to sort my own things out today ready to see the oncologist tomorrow early appointment. Best wishes with sorting your health out.
Thank you for your reply.I know a bloated abdomen can be many things but mine is definitely not IBS which was assumed just because Ovarian Cancer was ruled out(2009).I have nev er presented with the symptoms of IBS.I did not take any prescribed pain meds because of my gastric conditions.I did take paracetemol but they did nothing to help with my pain so I use ibruprofen gel to help ease pain in my bones and joints.I do suspect Lymphoma because I now know someone who has it and Ihave not been given any reason for my symptoms.I nkow Fibromyalgia leaves me feeling fatigued and I also have been diagnosed with sleep apnoea and the masks did not work for me so now i have a monitor that sits at the back of my neck.I sleep 1-2 times during the day-before or after taking my dogs out and I feel weak when carrying even light weight shopping .My weight is nothing to do with my diet -In 2015-16 my weight fluctuated between11.3 an d 14 stone and all I got told was "that does not happen"-it is due to the mass that is my abdomen.I have little appetite and never feel hungry,get a feeling of fullness just eating a small amount.I dont eat cakes snacks or puddings and can only manage smallmeals .I have had about 5 episodes of losing weight unexpectedly and this has been from my arms legs and hips-never from my abdomen.In January my GP thought an attack of breathlessness was angina but did not investigate for angina.I have seen a cardiologist and have a CT angiogram booked in July to check my arteries.I have asked my Gp if he can arrange a scan of my abdomen -either Ultrasound and /or CT scan.Hope your oncology appt went well.
Have you been checked out for Female problems? Ovarian cyst can grown so large it makes you look pregnant and causes a lot of random pains as it presses.
I underwent tests for Ovarian cancer/cyst around 2009 over two year period as my abdomen was so distended.,At that time there was a lot in the media of women with ovarian cysts not being detected and causing them to "look pregnant"and I had put that to my then GP.My CA125 was raised for most of that two year period before levels dropped to almost normal.
I actually was diagnosed with ovarian cancer because of the massive cyst I had removed grew back almost immediately … upon further examination of the second cyst removal and CA125 test being done and elevated and then multiple visits to a women's cancer hospital I had a hysterectomy … it was a long year nightmare that actually ended up being a walk in the park compared to thyroid cancer.
This is so awful - I had the distended gut thing for several years and got nowhere. Told IBS... all a waste of time. Spent a small fortune on probiotics, eventually it went on its own. Horrific times and I really feel for you. Take care and be well. xox
I was admitted to hospital in 2021 after experiencing chronic abdominal pain -it woke me one night and the paramedics would not take me to A&E.A week later I woke in the earlyhours with the same pain and again the same paramedic did not want to take me to hospital.I spent the weekend in hospital awaiting a scan and when I was given the discharge letter it stated "IBS and gallstones",I told the doctor I had never had IBS and it should notbe in my records and as for "gallstones" I had my gallbladder removed in 2013 because of gallstones.It turned out Appendicitis was the cause and this was missed by the hospital doctors .this has been going on for over 12 years and still no diagnosis.
Why would they not take you to A&E, twice!? IBS... I heard was a diagnosis of exclusion of other things! No gallbladder but gallstones... what are they like!? Make it up as they go along.
Wow - I was told IBS years back... no meaningful signs. Yes, I too have a long term gallstone and my appendix was removed January 2022. Take care and be well. xox
It sounds like you are going through a lot at the moment and I can understand your concerns. I was pleased to see you have already received support and ideas from others.
I wonder if our self-navigator tool would be of help. It is a tool that encourages positive communication during healthcare appointments and more information can be found here: painconcern.org.uk/the-navi... There is a downloadable form, which you can complete prior to a medical appointment and this acts as a guide of what to focus the discussion on.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
At whits end most days
pain unbearable coming to the end.
Please please help me. Is this all in my head
On and off pains in ribs, back and chest for 3 months - scared my lungs will collapse - please help
