today appointment

came home from doctors trying to keep back the tears until I got home.showed him the three things I ahd written down,went thru two of them but still didnt give me any answers.he says he spoke with the gynae and told me what he said tho i cant remember it now.. gp read from my paper that i had persistent pelvic pain from when i got up and how it was affecting my daily life and that i was leaking urine again.this didnt concern him .i had written on the side of the paper if not OC then why pelvic pain,he said he couldn't answer that -all my scans were clear and the gynae says everythign is normal.do you now accept that it is not OC.told him no. and that gynae said its not a gynae problem so must be bowels-which he assumed.never had bowel complaints.ive told you ive not eaten cakes biscuits etc fro so many years and now never feel hungry don't even want breakfast and struggle to eat a meal.he said "oh that's good",how can it be good to not want to eat anything?i told him again my weight gain is all abdominal and nothing to do with diet.he then said its menopause and IBS.told him i dont have ibs.my periods stopped when i was 50 (2008)and problems started in 2011/12.

said nothing about the hernia or other things that were discovered by endoscopy.

he say they dont have answers as scans and bloods etc are normal.

i know my body and i know it s not right.it is not IBS and also they pin everything down to fibro. when i know its more than that.i dont know of any woman my age and menopausal or see a woman my age with a huge stomach .why else would my dogs have been the way they are fro the last year +?i have never had menopausal symptoms.

made another appointment in 2 weeks to "discuss????" the third issue.what will be the point if he doesn't accept what i tell him and still doesn't give me answers.going to write a list of things that dr s have dismissed and not accepted and that i cant go on looking like i do -with facial and other swellings and skin rashes .saying they don't know answers is unacceptable.

where do i go from here .wait until something serious happens and i collapse or something,i cant go on anymore like this and i cant bear the thought of not being here for my dogs.i so need a drink.

26 Replies

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  • Hi

    Oh it does sound as though you are struggling. It sounds as though your medic either doesn't listen or doesn't understand you and certainly isn't able to enable you to feel supported and reassured. It sounds as if he is trying to give you any answers to placate you rather than that he actually knows what's wrong.

    I had similar symptoms to you for some time and struggled, then decided to sort things for myself so researched online and changed a few things and I do feel very much better - and my fibro symptoms have largely subsided.

    I wonder whether your distended stomach relates to WHAT you eat in some way as that was certainly true for me. I would suggest you list everything you eat on the website called myfitnesspal as that will help you keep track of what you are eating. Often a sensitivity to gluten or milk products or some other thing can lead to a huge stomach and feeling bloated and unwell so do try that. At least that way you will begin to understand the relationship between your symptoms and what you eat if they vary from day to day. I was diagnosed with IBS but it all cleared up when I stopped eating rubbishy foods. Now I only eat unprocessed foods the majority of the time and my stomach feels fine, as well as that I feel very much better in myself and have lost one and a half stone almost all around my stomach so I have dropped a trouser size! I look and feel better - before using myfitnesspal I didn't realise I was eating badly, so please give that a go.

    You might also record on that any exercise you do - and also bowel and bladder movements - there isn't anywhere on the site to do that formally but you could note it on a piece of paper and then add them at the end of each day or the next morning. You may find there is a pattern between your weeing or pooing (sorry to be graphic) and what you have eaten the day before.

    I also wee a lot at times and often wonder whether it is type 2 diabetes although bloods say it is not, but I find when I drink more fluids and eat more fibre fruits such as apples then I wee less! It's worth trying.

    In terms of urine leakage there can be many reasons but maybe a prolapse as that can often go with having a large stomach - did the gynae examine you for prolapse?

    The other thing I have done and which I never would have thought I could do is to exercise more - I went to the local healthy walking group expecting a stroll - as they are called the Plodders - but in fact it was quite a fast 3-4 mile walk! If you had asked me I would have said that would be out of the question for me as I was aching doing nothing, but in fact I managed the first walk relatively easily, just felt breathless like everyone else, and didn't ache any more the next day. I did the same thing a second time and by chance someone encouraged me to join the Ramblers. It felt mad but I took the plunge and so far have done two 7 mile walks in the Lake District and Yorkshire - not only did I manage the walks but also had lovely company and really good days out, I'm going again this Sunday. Sitting here now with mild fibro pain it feels impossible but in fact I feel so very much better for some real exercise but at a decent pace and knowing I will be supported by the group who are so lovely, that in itself feels like a support group as a number of the walkers are in pain and in fact one of them has serious fibro and arthritis and uses two sticks. Also the person who runs the Plodders group has serious fibro and at times is bedridden whilst on good days she has run marathons! So do also think about joining a local healthy walking group (NHS health promotion) if you haven't already done so as they are supportive and you can go at your own pace which can be as slow or as fast as you like.

    Sorry if none of that is relevant, they are just ideas and things I have found have helped me to ease the pain and the constant worry about whether I had some very serious thing wrong with me.

    Suexx

  • hello sue.

    have just got back from walking my dogs and couldn't help myself from crying whilst out.i heed what you say but it is a case of them saying what things are not not what they are.i had 9 months of treatment for nasal sores and bleeds none of which cured anything so got referral and all ENT said was its not sinuses when I never had a sinus problem.thats how its been all along.,it cant be down to what I eat cos i don't eat anything-I never fell hungry and what I do eat I choke on and have difficulty swallowing.i have gone online to research my symptoms cos they don't give me any answers an d he just got angry at that.i haven't eaten cakes biscuits snacks or puddings for years and now struggle to eat anything at all.we need to eat to live and he wasn't concerned that I couldnt eat etc.i had stress incontinence and had an op to cure this and have just started leaking again.i walk my dogs twice a day even tho its a struggle.my head hurts now from crying and i don't know what to do.i feel so weak and in pain.

  • Gosh!!!! U poor thing. I totally sympathize. I have dreadful IBS. I get it from cerial, bread, fruit, veg/salad. Its so painful. As for leaking, I have been doing it for 2 years, in fact sometimes I stand up and get quite a gush without any warnings. Then get the opposite and can't wee, it just doesn't happen, no sensation, nothing. Then get stomach ache followed by infections because the urine has been in my body too long. I saw a neurologist who told me this was down to nerve problems caused by my fibro. ( I saw him cause they thought I had m.s as I display m.s symptoms) because I had fibro he signed me off and sent me back to my fibro specialist, who was so horrid I refused to see him.

    I've had fibro for 7 years however I didn't get as Ill as I am now until nearly 3 years ago. I spend most of my time in bed, exhausted. I get terrible allergies, never had them before.

    What I did was phoned my surgery and asked for a phone consultation and asked to speak to a g.p that wasn't my usual ( you are entitled too) and a lovely female gp called me, I explained I could go in as I was simply to I'll and alone, and said I wanted to speak to somebody different as I felt my gp was ignoring me and not taking my symptoms seriously. She listed to me ( I cried) moaned, she was really nice. She said it sounded like my illness was worse due to overlapping me/CFS. I'm waiting to see a me/CFS specialist. I then googled the symptoms and I couldn't believe what I was reading.

    Me is different because of the extreme fatigue we get and all my rashes and stomach problems because I am constantly getting allergic reactions to food, the air, pets, soaps etc, I'm pretty much allergic to everything!

    On reading it it also pointed out that 80% of me/CFS sufferers don't get diagnosed for years!!!! It also pointed out that it is common to get it along with fibromyalgia.

    Unfortunately a lot of professionals in the medical circle do not take our illness seriously. They put the fibro ticket on everything and put you back on the shelf. All I can suggest you do is fight for more help. Search for a better understanding doctor. If your specialists arnt helping tell them or see somebody new. It is within your rights to do so. Also, contact ur local council and ask for the department who can help you, I've had a toilet seat raiser, grab rails and a mattress elevator, I don't know how I got on without them before. I to my surprise i didn't have to pay for any of it.

    Look up me/CFS symptoms and see what you think. I know we are all very different but u never know. I hope I've helped. I totally understand. Really feel for you. Hope you get some help and relief ....Becky xx

  • I get this too Becky, I have CFS alongside Fibro, and ended up being referred to a urologist. He said irritable bowl and bladder, plus urge incontinence were very common in Fibro and Poly-arthritis (polymyaligia). I'm on a drug called mirabegron that means I have no more accidents, although sometimes it's hard to go, but that's fine by me! The only side effect is a slightly dry mouth. My IBS is less controllable though and I get awful cramping, very similar to period pains x

  • Should say, I'm also allergic to everything, even the sun, my own hair, and my sweat!! It's bonkers! X

  • Its so weird (all these allergies) I can't sit in the sun any more, apart from the fact it feels like a magnet pulling my pain and strength out of me, I get big red itchy blotches. I get them of my kitchen strip light, had to buy a cover for it. I sweat terrible but don't think I have an allergy to it, I get itchy heat rashes any way. I will mention that medication to my gp. I've never had as any meds for it.

    The cramping is like period pains isnt it. Get unbearable at times. Make me Oooh aloud lol xx

  • have read both you replies and will reply later when hopefully more composed mind.

  • Much love x

  • Hi anbuma,

    You know I don't want to upset you, and I'm only saying this with the utmost kindness, please, please listen to and be reassured by your GP about not having Ovarian Cancer. I would like you to be able to understand that if you had had it for the past two years you certainly wouldn't be able to have even that quality of life that you do, infact it would be quite likely that you would not still be here. I would love you to get your concerns about your symptoms taken seriously, well all are entitled to that, but as long as you insist that OC is what you have, I know from friends who are medics, that it becomes difficult for them to deal with you as they know you won't accept their advice. It's not how they want it to be but it does end up driving a wedge between you, and you certainly don't need that.

    Give hugs to your doglets from me please and please don't take this the wrong way it is meant with concern for you !

    Foggy x

  • Hi Foggy.i only said "NO" in my post cos he hasn't given me any other reason for anything. I had a chat with my sister in law last night and she brought it up about weight issues and I told her that I had being telling drs for the last three years that I ahd lost weight elsewhere and gain being all abdominal .she suggested actually measuring my legs arms and bum etc I replied taht is what I have been doing for the last 3 years and i know ive lost 2 "of each leg,2"off my bum and gained a further 2"on my stomach since February(and same between last august and then).they cant accept that only considering total weight gain and not considering it is in one area-not total body,.regarding me accepting their advice they also need to accept what I tell them which hasn't been happening,she suggested going private btu I cnat afford that and they would have to arrange it as these private clinics are out of town and not accessible by public transport and they would have to take me.tehy asked my mum last time and she paid so they are going to ask her again.

    it is unacceptable that gps say they say what thinsg are not btu dont consider what they are as was case with ENT saying "it s not sinuses" after me having nasal sores etc fro 9montsh .I bet if it was the dr's wife they wouldn't stand fro this kind of treatment.

    tahnks fro "hugs for my doglets",its so hot today at 11am couldn't let them stay in the garden.

    asked if I could see rheumatologist again but he wont refer me -because last time I wasn't given the chance to tell of my symptoms.altho diagnosed with fibro in 2005and thinsg were stable until 2011 -read that lupus begins with raynauds and strikes with a vengeance and that is how mine started and hit me,plus fibro does not give skin problems(rashes).I ahev the characteristic "butterfly"rash across my face and nasal/scalp sores which are signs of lupus.i woke this morning with excruciating pain in the top of my stomach(acid?)

    felt like i was dying.eventually eased an hour later after omeprazole and going back to sleep fro an hour managed to eat a piece of toast mid morning. took dogs out but not far cos hot and me feeling weak.

  • wa sinthe middle of replying to your post and lost it.do so tomorrow.

  • Hi anbuma

    I am so sorry that you didn't get any answers from your GP visit. I genuinely hope that you can find the answers that you are seeking.

    Take care

    Ken x

  • Hi and thanks Ken

    had chat with sister in law lats night -discussed going private tho I say why should we have to cos ignored by gps/gps not accepting what we tell them.

  • Makes me mad when the people we trust to help us recover dont listen to us. We know our bodies better than anyone. I too have fibro, I also have RD and osteo and all I get when seeing a doctor is comments about losing weight. I never feel hungry and hubby has to remind me to eat and when I do eat I get bloated. I dont lose weight no matter what I do. I got so fed up that I started to research into how I can help myself and I have recently been checking out the ThyroidUk site and a lot of the symptoms they note for hypothyroid are what I have. I also joined the forum and have had lots of answers to my questions there. Just got to get the doctor to listen now to my concerns. Hope you get some answers soon and start to feel better too. Gentle hugs Joolz.x

  • hi Joolz.

    goodluck hope your dr listens to you,.i have gotten lots of answers and good advice from this site but presenting them to my gp was another issue cos all I want is answers and fro them to accept what I tell them.he said yesterday it was good that I wasn't able to eat .how can that be ?we need to eat to survive.!

  • Hi Anbuma i a so sorry you are having a bad time still. I understand what it is like not to be taken seriously by doctors, I too developed virtually overnight a HUGE stomach, terrible pains and nausea, had nearly every test available and in the end they said must be IBS, I knew that was not the case, finally after 18months got diagnosed with sphincter of oddi dysfunction, all to do with bile and enzymes. What I did though that helped bring my stomach down quite abit was a garlic and parsley cleanse(daily tablets) and probiotics, I believe because i could not digest food I probably had candida in my stomach. might be worth a try, also you do need to eat small amounts up to six times a day, look at malnourished children ! HUGE STOMACHS wishing you well, oh and as said oc would have you in hospital by now so dont stress over that one anymore x

  • this could be the case after having gallbladder removed?,asked about that(bile having nowhere to go etc) yesterday .

  • Hi again you can buy garlic and parsley and probiotic at health shop, stay on it for a few weeks, dont eat any fats, fibrous veges or meat during that time, I believe you can have it happen on your oesophocis but you REALLY NEED TO DO THE CLEANSE AND DRINK LOTS. KEEP IN TOUCH.X

  • went into the health shop yesterday and couldn't remember the name of them .so go back again on Monday with it written down

  • where can I buy the tablet syou mentioned.a hospital dr said something to be about the sphincter muscle in the oesophagus(?)is that the same sphincter condition you were diagnose d with?

  • I'm so sorry to hear of your problems and empathise with your frustration. Unfortunately we set great store when seeing our G.P's and consultants thinking they are Gods and can fix us but sometimes they don't always have an answer and that is very difficult to accept in this day and age. I would suggest seeing an alternative Doctor even in the same practice who might listen.

    I struggled for over 20 years believing the Drs were aware of my history, it was only after four doctors that my current doctor listened and read back through 20 years or more of medical notes that I was finally sent to the correct consultant.

    I hope you find a doctor who will help you to do more thorough tests rather than the norm. Maybe liver function tests, tests for Hepatitis B or thyroid if these have not been done I have no medical experience except my own and know it can be difficult to change a doctors opinion. Persistance and research will pay off.Good luck and best wishes for better health soon.

  • Sweetheart you need a new doctor as soon as possible!!! That's terrible. I'm so sorry for the way you were treated. Can you possibly see a urologist? Maybe that may help. It could also be you back if the nerves are pressing on certain nerves. Sounds like you may need to have an MRI and further testing as it's not just going away and it's crazy to make you go through so much pain because they are being lazy. Sometimes its something rare and some doctors only look for the common things. I hope you can find a compassionate doctor and one who will help you. Bless your heart!!!! xxx Mitzi

  • thanks Mitzi,have asked fro re referrals in the past and he wont do so.dermatologist was on advice of 2 A&E drs btu he still wouldn't refer me.is he frightened of the consequences?ihave a curvature in my spine so could that be the problem?

  • I just want to be able to go out without a coat on to hide my stomach and not wake up to my face being so swollen it takes me half an hour to be able to open my eyes properly.having to hide my swollen eyes/nose behind my hair

  • going to contact MP again and/or NHS England -telling me that they only "say what things are not"is unacceptable.they need to say/investigate what things are and accept what they are told by patient.

  • appointment booked with private gynae in august,hope to get some results.

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