proposed letter to PALS

.my problems began about 2-3 years ago having being diagnosed with fibromyalgia in 2005 I was fairly stable with my conditions until 2011.then i began to get a whole lot of new problems.It started with rib pain and then abdominal swelling then progressed to skin rashes and general swelling.i have had a poor appetite for several years and now have to force myself to eat.Overtime my weight has increased considerably by around 3 stone which is all abdominal and having lost weight elsewhere this concerns me that I may have ovarian cancer.although i have had several scans which say otherwise,my gp persists in saying i have IBS even though I have never presented any symptoms ie constipation and diarrheoa.I was not told this verbally but only found out from a letter my gp wrote to the DWP.Prior to that I was and am being told "its my stomach".I have seen my gp at last once a month trying to get answers and a diagnosis but I am feel I am not being taken seriously.

over the last two years I have developed a cough which remains undiagnosed and nasal sores and bleeding plus nasal and brow bone growth which i have been told is a condition called Acromegaly.,.Although having treatment for my nose ,it only provides temporary relief and then flares up again.After about 9 months I was referred to ENT dept only to be told "its not a sinus problem".i went back to my gp as neither myself nor him had ever mentioned sinuses and was refused a rereferral.i still have flare ups now.

I also was referred to a rheumatologist in 2011 who only spoke about weight and diet telling me I needed to lose weight but would not accept that my weight gain was not due to my diet as my appetite had diminished and I barely ate and that the weight i ahd gained was all abdominal.again my gp wouldnt support me and i eventually got an appointment to see the rheumatologist which was not the rheumatologist I had seen previously even though they tried to tell me it was.

As my symptoms have worsened over the last three years I am able to do less and less.I am desperate to get a correct diagnosis.i had scans carried out in early 2012 and these were said to be normal.i was referred to another gp recently who arranged for me to have an endoscopy and a colonoscopy which revealed several conditions-hiatus hernia.gastritis,duodenitis and diverticulitis.if i had been listened to these especially the Hiatus hernia could have been discovered two years ago as I had stomach pain in that area although i had no signs of any of the other three.My stomach is still increasing in size and weight and this is still not accepted.I am still being told I have IBS even though I say I have no symptoms.i am told that the reason for my stomach s swelling is its bloating caused by gas but that too is only a recent diagnosis.

I also had my gallbladder removed after which my stomach swelled .

I saw my gp recently re persistent pelvic pain which i have also had for over a year and is disabling but was told "i am not having anything to do with your stomach".I said it is not it is my pelvis. I have also had various other symptoms which resemble those of ovarian cancer but I am told i am clear of it and any concerns that i did have OC were based on a few things -that Babs was orignally misdiagnosed,my gp not giving me any other reason for my symptoms,and hearing and reading that it is OC is difficult to detect and it is said that it is mistaken for a bowel condition.

I also have had difficulties swallowing and several choking fits after eating.i believe this to be thyroid related as my neck and tongue are swollen and my thyroid feels enlarged btu all i got told was "I cant feel anything".i have not had a neck scan at gp said she would refer me to ENT if it continued but this never happened.

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40 Replies

  • Hi megmog.that was written in the early hours of this morning when I couldn't sleep was half asleep/tired and I wrote things I shouldn't have.have changed it now .I take what you said about them carrying it out and wont send it ,it was a heat of the moment thing.i did say my symptoms resemble those of gp didnt give me any reason not to doubt the obesity thing I spoke to him about that when i found out he ahd put "obesity"in my notes based on BMI.and said then I had lost weight elsewhere and the gain was all abdominal and I said exactly the same to the rheumatologist but they didn't accept it.telling me I needed to diet even tho I explained I didnt eat anymore than breakfast and a small meal.i feel I shoudlnt have to write things down to prove to them they should accept my word but they don't.i have kept a daily diary of how thinsg are and what I eat.i have never heard of Oralistat.what exactly is it?

  • Hello Megmog.I think I may have had something like that years abdomen is not I say I haven't eaten cakes biscuits puddings snacks since about 2007.if noone believes me then it's their problem.for last 4 years I have only had breakfast and a small meal,I cànt cut out what I dont eat.BMI only gives total body weight not where it is distributed ,and he can see how huge my stomach is, my arms have always been thin and I have lost weight on my hips and legs, I am a normal size 12 apart from my stomach and that was not thru trying.whichever way you tell your gp things whether it is written or verbal I could write anything down the same way as i could say nayhtign does nt mean it is gospel. I dont drink or smoke and only drink water with meds and squash. I walk my dogs twice daily which is slow and paiñful and I have to stop a and Rest so often.

    reading your reply that is what nobody is getting- my stomach is nothing to do with what i eat.

    yes its excess weight but it is NOT fat.BMI cant be considered accurate measure of weight if the weight is beyond a persons control.

    its like measuring the BMI of a pregnant woman and saying she is obese when its not her normal body.

    regarding recent diagnoses my bowels are very much normal and always have is a disease of the colon not the matter wihtin the colon.i have never complained to gp with constipation or diarrheoa so why do they persist in giving me meds for somehtign i dont have,.if my gp thinks i have IBS then he never told me and never prescribed any meds.and besides with IBS bloating comes and goes and it s not there all the time.i ahve not ha dthe cramps that go with constipation either.

    cant remeber the rest of what i wrote previously.

    a si said the hiatus hernia could have been discovered a lot earlier if he listened to my symptoms.

    any tests are based on what you tell the dr in the first place and if one test is negative that doesnt give them the right not to consider any otehr orignal gp did every test under the sun to find out what wa swrong and referred me to consultants to confirm or rule out things

    sorry megmog the rets of my reply got "lost",don't have time now will post later.

  • ye s and thats all it was a rare glass of baileys ,cos i was bought it.glucose was not an energy drink it was a substitute because i wasnt eating/had no appetite and which is recommended to take if one is ill.some people are opinionated and there are plenty of others who have the same experience with their gps.i find it unfair you saying i think i am always right and you would be the same if you never got answers.only i know what my gp says or doesnt say and if people cant accept that thats tehri lookout and only i know my body.i woudl say other stuff what i think about peoples attitude btu it is not printable and not within hu guidelines.

    from what i remember its your comments taht got me banned from using the site just cause i stuck up for myself.if oyu read my profile then you would see i ahve good cause to be "at loggerheads "as you so baltantly put it.youre referred for a reason to get a daignosis fro somehtign nto to be told what you dont have!!most member are supportive and understand what i am going thru

  • im sorry I beg to differ and your comments are harsh and unacceptable. .i have to correct you yes i have spoken to my gp but he hasn't ever advised on anything.its comments made like "its your stomach" and "I dont know what it is"that don't tell me anything and offer no reassurance it is not something serious.yes i asked for advice and DO take what advice is given and I do NOT ignore what people say.all I have ever wanted is an answer for my symptoms which no one has given me only saying what things are not.the only time anyone has done something positive is the DR D I saw and who listened to me arranged oscopies which revealed all my recent diagnoses relating to my stomach and colon.if my gp had accepted what I told him then the hiatus hernia would have been discovered two years ago.i posted that as my profile as it is how things have been the last three years.i have never changed my story yet get told different things by different drs for the same things and it is other people who don't accept what I tell them.

  • Visible signs such as skin rashes and swelling are not fibro Plus I have never been given a reason for them.and there is the unexplained bruises he has seen and said nothing about.

  • yes exactly seek advice.not to criticize or pick holes in what someone says.only I know my dr so it cant be said by someone else that doesn't know him what he has telling me to wear make up sound advice?i have commented on others posts and said what i think but I don't criticize.!!take heed.

  • this is the first time you have replied to any of my posts??some members have been opinionated,what ever I say is gospel.

  • Anbuma,it is obviously at the back of your mind about Ovarian Cancer as you are concerned about it.Can you think of or do you know of any kind of test/scan etc that could absolutely rule this condition out as it is causing you so much distress /worry.This is not meant in a nasty way so please dont take it the wrong way . Surely there is some test ? Please dont say you are not worried about it as you mention it over and over so you must be living in a constant state of anxiety and I dont like to think of you in this state if it can be positively ruled out. All this anxiety could be causing you so many other health problems. Best wishes Beth

  • hi Beth,im trying to get it out of my mind my brother says ive had scans which are clear.but it stems from my gp not supporting me re two consultants i saw one of whom kept telling me i needed to lose weight and woudl not accept that my weight gain was not thru diet and all gp measured my BMI and recorded me as being obese which angered me as it is only cos of my swollen abdomen that i was overweight and no dr had given me a reason for it.i have gained 3 stone since 2011 and IT IS all abdominal despite what some people gp has never accepted that.then i heard Babs story and she was told she had a bowel condition when it was OC all along sadly she passed away a year ago.i heard on national TV from two tv doctors that oc was difficult to detect and mistaken for IBS and also read so many stories in magazines about women who looked several months pregnant and were fobbed off by their drs and it turned out they had OC/tumours.tahst why i find it hard to accept cos no support from gp who just said thinsg like "its your stomach"which tells me nothing.i was given no other reason for my swollen abdomen which was increasing.

    #they ddi a CA125 test in the beginning tho i wasnt sure what it was for as not heard of it and my gp ddint explain so i just thought it a routine blood test fro levels were not excessive btu raised considerably and i was told they are coming down .then the hospital did the same test over the same period with totally different results so i thought that test cant be reliable.

    if i had more support from my gp then i might nto be thinking i said in my profile he only said IBS in a letter to dwp never actually told me.

  • Anbuma if you really cant get cancer out of your mind how about asking your GP for some cognitive behaviour therapy to teach you how to change your thinking. I had it some years ago for OCD and it helped tremendously.

  • will read up on it first

  • where did that come from?it seems like I have to justify myself to everyone?i don't eat huge amounts of fried food in fact hardly any.its no big deal to have one fried egg once in a while.for everyones information majority of my food is oven cooked.are you going to tell me you don't eat fried food OCCASIONALLY.some foods that is the only method of cooking.

  • I was just reminding myself of foods you ate when you said you didn't.

    Keeping a diary of ewhat you eat can be a real shock when you add up the colies. 100g extra a day which is only one bix and you will put on a stone in 12 months. That's scarey.

    Nope never eat anything fried. I expec there are many who don't through illnes or medical reasons. Fatty foods can upset your gal bladder.


  • i still dont see where you are gettign htis from?if i say i dont eat foods then i dont,dont even buy cakes or biscuits crisps etc!money deosnt stretch to them as have two dogs to feed and maintain .as i ahve said i only eat breakfast-(brunch) and one small meal no puddings and have done so for years and what i do have ends up in the dogs' bowls cos i cannot eat it. I DONT HAVE A GALLBLADDER. .it was removed last year and which was only detected by a private gynae doing a gps scans never showed gallstones and i never had any pain from them.same as i havent any pain from gastritis or diverticulitis only pain from my hiatus hernia but abdomen is sore around navel and rock hard,.

  • Hi anbuma3,

    I have been in your shoes and I can totally understand what you are feeling.

    I have been suffering with severe pelvic pain since 2001, and I went to about 4 different hospitals to try and get a proper diagnosis. My stomach was increasing in size, and due to the pain I was in I didn't seem to be getting anywhere with the consultants, as they didn't seem to be listening to me, and it didn't help with all tests coming back normal.

    I too was reading in magazines and books that ladies looked like they were pregnant when it was ovarian cancer they had. When you are in so much pain and you're not getting a proper diagnosis your mind runs away with you, and you can't help but fear they are missing something.

    I was having blood tests and scans and still I kept thinking well I've got cancer and your not finding it. It didn't help that my father died at 37 with stomach cancer, and I was the same age, so I thought well I'm going the same way.

    With all the tests that yourself and I have had they would have found it by now, and the CA125 is a blood test to find cancer, and it's come back clear.

    I have had to adjust my head to come to terms that what they have found, the pelvic pain and IBS is what's just causing the pain. If I had some sort of cancer I would be feeling very sick by now but I'm not, and neither are you.

    But what you do have is some sort of depression like myself has, and it's that that needs treatment.

    I'm trying to help you as I heard so much of myself in your posts, and that was exactly the way I was feeling too. But my darling you haven't got cancer, you just need to get your head to adjust with what you have diagnosed with, and it's not easy. It is hard !!

    I now at the moment have a lump in my leg, and I'm telling myself it's again cancer. But I'm feeling fine, I will get it checked but I have to come to terms with what they tell me.

    But I know how you're feeling and I'm not judging you at all. But you do have to come to terms with what you have got and adjust your mind to it as well.

    You may well need anti depressants to help, but speak to your doctor and tell him, as it is still an illness, but it's mental health not cancer.

    You take care and I hope I have tried to help you.


  • thnak you so much georgie.I am so glad i am not alone maybe other members read your post and accept what i am saying is gospel and not made up.regarding depression my mind is ok.i get occasional moments when i do feel depressed btu taht is only when something has gone wrong and my dogs keep me sane.a nice walk with ands a cuddle from them blows thngs awya. if i do have any drink it is cos happen to have some bought for me./i dont buy drink myself.i have never drunk alcohol cos on so many meds.baileys is a liqueur.

    am taking anti depressants .the stories i read about they said their "Cysts" weighed like 22 lbs and they were being dismissed by their would be a whole lot easier if i my gp would accept what i tell him and reassure me more .he acknowledges what i tell him and then says "its your stomach"or " i dont know what it is" and even on one occasion said to wear make up.what are your symptoms of IBS.from all ive read is it is a combination of constipation and diarrheoa and the"bloating " comes and goes" which is not how i have been.

    i have swelling from head to toe and that could be diabetes.someone told me on here that the bone growth i ahve in my nose and brow is Acromegaly which also accounts for the thickened areas on my hands.

    I have seen a change in my dogs behaviour in the last 18 months for whatever younger dog Annie is by my side 24/7 and all she wants to do is lie by my side be it in bed or on the sofa and she panics whenever Buster who is 6weeks off of 13 chokes or retches and runs to me for comfort .Buster has also changed to hating being left even for a short time where it never bothered him.

    i have an appt tomorrow and hope he will listen to me and start a new slate once he has given me some answers.his support is what i need to and i havent always had that especially after the consultant not making a diagnosis.

    was your CA125very high?mine varied between path can also be a result o f some other gynae conditions.a lot of my symptoms could be thyroid related so ive been told.,

  • all I can say is you have a big problem and are bang out of order to tell me what I say is not the truth and call me arrogant.what I would like to say to you is unprintable and against HU guidelines.maybe you should read the guidelines and you DO NOT know my gp.if you cant be supportive only critical then DO NOT ever reply to my posts.

  • ive asked you politely not to reply to my posts cos all you are doing is insulting me .so don't .I know perfectly well what I have posted.i have not twisted anything .you are not not wasting my breath on you anymore

  • you don't know my gp how do I know what you say is the truth?anyone can write anything if they want.your comments are uncalled for .and do you?

  • you too don't know my gp.what is OP?

  • Think its opening post,but its same thing!

  • lost of criticism and defamation.gps don't always listen!

  • Hi anbuma3

    I was told I had Pelvic congestion, which is like having varicose veins on your pelvis. Obviously they are painful when swollen and a consultant actually agreed for me to have a hysterectomy, but when he retired, other consultants didn't want to touch me.

    They even offered me pain management course and I rang the clinic in severe pain they told me to lay in a dark room and light a candle, like that is going to help !!

    So I've had some trying times in hospital as well. They never did the CA125 test on me, but I do know that is a test for some cancers.

    I have a permanent dull pain on my right side and my gp has now prescribed morphine for my pain, but nobody is bothered now trying to find out the reason for it no more. My doctor very rarely calls me for a thyroid check, which I suffer with. I have an overactive thyroid which doesn't help with weight gain, but last year I was diagnosed with Lupus.

    On finding about that illness a lot of people with it suffer with fibromyalgia, which I now wonder if my pain is related to that. I now have osteoarthritis in both knees and I'm only 43.

    Again this could be another illness for yourself to be checked for. I suffer with pain all over my body really, and I have a rash on one half of my face. Lupus sufferers are not to be in direct sunlight. So if you come out in rashes in the sun again this could be you.

    But I do admit it's weird that your dog's senses have changed to you. You could always ask for a second opinion at your surgery for cancer tests and see if they are willing to do this for you, but it could also be something entirely non cancerous too.

    I hope I haven't upset you in anyway today, I was just lending my shoulder as I completely understand what you are going through, and I am always here.


  • no Georgie thankyou for your support you haven't offended me in any way not like are very surprised they never did a CA125 test for you.when I told my gp about my pelvic pain like everything else it was put down to fibro.when I saw him a couple of weeks ago and said I was swollen there too as well as the pain being persistent and disabling he said "im not doing anything that is your stomach".sicne when has my pelvis been in my stomach?i have read about nerve pain in the pelvis.i think pain courses are a waste of time when they don't find the cause of the pain.

    I am positive I have lupus from the nasal sores,and skin rashes/sores I know its definitely more than just fibro as sicne I was diagnosed in 2005 pain was only in my joints until 2011 when things suddenly got worse.i read that lupus starts with raynauds which is how my problems started and can lie dormant for many years before striking.

    I also think I have a thyroid problem cos i ahve swelling ,tightness,difficulty swallowing and choking fits for about a neck does feel "lumpy" oh and a swollen tongue to which my gp just said "I cant feel anything".i was referred to rheumy in 2011 as symptoms got worse and he was more concerned about weight and diet telling me to lose weight without letting me tell him of my sympotms etc.i told him my weight gain was nothing to do with my diet as I hadnt eaten cakes biscuits snacks or puddings for years and until someone tells me what is going on with my stomach I wont lose it.he then said I need more exercise as if walking my dogs wasnt exercise s known walking is best exercise .I was hardly sedentary back then.

    I believe my dog sense something is amiss.its known dog detect illness in their owners because of their senses of smell .tahst why they train dog s to detect cancers etc and dogs are known to sense when their owner shave epileptic fits etc.

    I have psoted pics of my face and hands in the past btu will try and post again.

    once again thnak you for being here for me

  • You may find reading about somatisation helpful anbuma, don't dismiss it before researching it properly.

  • what is somatisation?not heard of it

  • it is a disorder, google it

  • If going down that track it may be an idea to ask for an appointment with a Medical Psychologist as the problems anbuma3 is suffering could have an underlying problem that is not medical. There seems here a problem that needs radical treatment choices

    We, none of us possibly are qualified to go down that route as the initial complaint may have caused a sensitivity that is amplifying itself and has opened a can of worms since 2011.

    Pain and associated conditions can leave a patient with very stark mental conditions or so I understand


  • Hi,

    Perhaps you should mention the Lupus next time you see someone. I'm taking Hydroxychloroquine and have steroid injection for my knees.

    At least start getting some of the things you have diagnosed and the rest will follow. You never know the pelvic pain could be fibromyalgia from the Lupus and getting that sorted may have a knock on effect to the rest.

    None of us are doctors and unfortunately it's their say as to what's wrong and we have to take that, but if you really are sure then say you would like tests done to ease your mind, but tell the doctors calmly. I've found arguing with them gets you nowhere, and I shouted and sworn at them, as I was so certain it was cancer, but at some point you have to get your head around that what they say is true.

    Dealing with pain day in day out can cause your mind to go into overdrive, it's easily done.


  • hi georgie

    if my rheumy has let me tell him when I saw him maybe I would have a diagnosis wouldn't discuss it and wouldn't refer me I got an appointment to see him thru his secretary and when it came round it was a different dr and the hospital;tried to make out it was my rheumy even tho mine was average height and darkhair this guy was tall and ginger hair.when 2 A&E dr s said I need to see a dermatologist for my skin in feb went back to my gp and told him he refused to refer me.

    its no wonder we have probs with drs .a hospital dr told me to stop taking omeprazole ,so when I saw my gp he said to stay on gp was going to refer me to ENT re swallowing probs yet when I went back cos no improvement she didn't.have had nasal sores for two years and give me various sprays and creams which give temporary relief and then it comes back again but when I saw him last he still said nothing about my nose bone growth.

    it may be true but its when my gp has thought it to be IBS for eg but never actually said that to me and if it is why hasnt he given any meds for it.

    I will mention lupus tomorrow if he gives me the time of day -I have photos of all my swellings to show him and some pics of lupus rashes

  • Anbuma it may be best as I suggested to just keep your consultation to one thing at a time.Rather than mentioning nasal sores,bone growth,lupus,throat issues and pelvic pain just mention which one is causing you the most stess which seems to be your pelvis pain/swelling

  • hi bethanie .I originally booked this appointment to try and come to some sort of resolution with my gp and get a diagnosis for things which I have had for 1-2 years and told nothing.i know that since i booked the appt my pelvic pain and hands have got a lot worse I cannot do/hold anything.

    my swelling has also got worse -mostly on my legs -so need to know why that is too.

  • Maybe I am mistaken but havent you already been told that you haven't got lupus. I recall some post several months ago.

  • hi Helen,

    obviously I cant recall that post without hunting thru looking for it.from memory I was referrred to rheumy in 2011 cos where things had been pretty stable they suddenly struck with a vengeance.he asked me how things had been and before I had chance to tell him he went on about weightloss and diet and then said its fibro.But from reading up on fibro,i knew it was something more.i have been treated for skin rashes etc btu no diagnosis given,so in one way or the other no one actually said yes or no.

  • there are conditions that are sero negative and I was diagnosed sero negative by my original gp.

  • id comment on this but "not wasting my breath".,BS!!

  • I think BS stands for what comes out of the rear end of a Bull!!

  • Could I hve an update please on wwhat you have got? What you haven't got? Ehat you think you might have?

    I sort of lost the plot overnight. Must have been when I nodded off exhauste thinking of some of those conditions.

    Grays anatomy on stand by ready for checking.

    P x

  • Hello

    I have tried to follow this for the last fifty entries, you seem to have been through the mill with tests and suggestions of what your condition is. Could all of this need to be investigated by a non medical department Please see my earlier suggestion


  • go and see an iridologist you will get an accurate diagnosis talk to the iridologist about hyperbaric oxygen treatment and start taking some Iodine with selenium this should help with your thyroid and hopefully kill any cancer that you might have.

    also start taking some sea salt (not the Himalayan one and definitely not table salt as this is toxic for us) boil some distilled water add in a teaspoon of salt and heat up to body temperature and have some of this through the day.

    also eat some Okra this is great for digestion Don't cook above 50 celsius as is lemon and limes organic only blend them up skin and all and heat to 36 Celsius the lemon drink is the closest to stomach acid as you can get and it also produces lots of enzymes in your liver and cleans it out.

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