Never ending problems

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The pain never ends, results come back clear and everyone around me thinks I'm complaining about noithing.....I need help, I need a diagnosis, I'm so tired of this.....doctors keep telling me it's a functional problem mixed with fybromalgia, excuse my french but BULL**IT! Not sure what to do next but one thing is for sure, I can't live teh rest of my life like this...

 

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  • Posted

    Hi again Jon, I cannot help you with your diagnosis, because I cannot help myself, but I can sympathise and understand what you're going through. I am taking the therapy the doctors precribed me, but that's treating thr symptoms and not the cause. I think I lost even more weight and I have yet again diziness, tiredness and confusion. This is most probably due to some serious malapsorption, but as with you: all my results are clear. It's very frustrating!
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  • Posted

    Hi Jon,

    I have seen you on the same threads as most of the people I'm beginning to "know".

    I do feel for everyone who has pain every day. It's so depressing! I'm going through a bad patch again at the moment sad my bone pains are being blamed on calcium defiencey and fibro. Only painkiller they'll give me is the amitripiline sad like dreamy82 I do everything the Drs ask of me. Do the FODMAP diet, take the amitripiline, eat low fat etc but nothing seems to work.

    I think my case my be slightly different from everyone else's as I know I have a dysfunctional gallbladder now. And I know that is triggering the pains on my left side, which are driving me CRAZY at the moment!

    Can I ask what ur symptoms are? what tests have you had done etc

    Gem

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    • Posted

      My gallbladder function has not been tested yet :-( what therapy (if there is any) are doctors suggesting for that problem? Are they going to take it out?

      I'm presuming it could be the problem in my case too, since my pain has initially started on the right side and then moved to my left.

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    • Posted

      I'm hoping they are gonna take it out! It's been causing me endless problems over the past year and a half. I see my consultant on 6th October, I know I'm gonna have a fight on my hands but I'm the one who pushed for the extra tests as I didn't believe it was IBS. I'm absolutely petrified of going under general anastetic sad

      I saw the cardiologist last week and he recommend I come off the mini pill as it makes gallbladder issues a lot worse. I have another appointment this afternoon to see my dr about my options. I knew estrogen could cause gallbladder issues but at no point has anyone told me to come off it?! He said they see lots of women who think have heart issues but it's actually their gallbladder a playing up. My GP also said to me that she will looking at her patients with OBs a bit more closely in the future to see if they have symptoms like mine so she can refer them for further investigations.

      It's a good job I didn't just take what my dr and consultant were telling me and doing a lot of reading! Else is still be suffering everyday with no relief!

      It's the pains on my left side that are driving me mad, there seems to be no end to them. No matter what I eat, or don't eat, the pain is always there sad

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    • Posted

      please tell me about the pain on your left side.

      mine is always there.

      i thought it was something to do with growing fibroid disrupting my digestive system.

      i have become paranoid researching dr google for answers.

      i have no faith in the doctors.

      although i've had countless tests i still think they've missed a vital link.

      so i've just taken my first dose of pancreatic enzymes prescribed by myself and and hour later i dont have the indigestion after my meal.

      but the lower pain just above my pubic bone to the left is still there.

      all in all i.m exited i might have made a breakthrough.

      so any idea what i say to my doc.

      how low down is your left sided pain?

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    • Posted

      Hi Chica,

      Amongst many of my problems I do have endometriosis so the pains I have in my lower abdomen I cannot tell you if they are related to my gynaecological problems.

      My pain on the left side is an almost constant dull ache in my ribs in my back. When I eat it aggravates the pain to a stabbing which goes across my ribs at the back, along my ribs at the front, in the middle of my ribs cage (epigastric), then I get an aching burning sensation in my upper back. I also have 1 vertebrae on my spine that is very sensitive to touch and aches a lot and is made worse if I bend over.

      I too have a fibroid (5cm) in my upper uterus but they don't think my pain is related to that.

      Gem

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    • Posted

      Sorry to hear that Chica.

      It goes quite far down and reaches 'vaguely' somewhere in my groin. The lower abdomen part is also always left and if I press on it it really hurts. No idea what it is and what triggers it, I presume its radiating from CP although doctors tell me it's IBS/Fybromalia. I need so much sleep! Also have problems after sitting down for a while, again in the groin and difficult straigntening my back. I keep waking up like its a nightmare thinking I'm in deep trouble, fact is I probably am. I have 3 young kids and can't find the energy for them, it's very sad. 

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    • Posted

      hi

      i'm assuming you're male.

      so you aint got 'lady parts'

      so do we have 'bladder' pain in common.

      some days i have problem trying to pi other days i'm to the loo all the time.

      you will probably think i'm mad but can i ask you...do you ever feel something twitching in the pain site.like as though something is wiggling about.

      anyone else experienced this?

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    • Posted

      I get the twitching like a tiny baby foot kicking just under left rib lasts a few seconds
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    • Posted

      i dont understand this.

      every gallbladder site on dr google insist the pain is on the right.

      so i tend to cross gallbladder off my list.

      also appendix is on the right.

      but recently i've spoken to women who had pain under left ribs and subsequently had their gallbladders out.

      why is it that whichever forum i research, everyone is desperate for answers and the people who should be giving us answers (doctors) havent a clue.

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  • Posted

    It's frustrating isn't it. 6 years of it for me. Been referred to gastro specialist for 3rd time now!
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  • Posted

    I knew that there was a connection between hormones and these symptoms, I just couldn't make sense of it!

    I wish the doctors could connect this, instead of me doing research on my own. I swear that I'm a few steps away from getting the medical school diploma :-)

    Anyway, I guess I could go one more time to the GI and ask for them to evaluate my gallbladder, although their looking at me like I'm crazy...and also, I'm back to Norway, so tough job!

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  • Posted

    i'm new to this subject.

    i've been trawling my way through gynno forums looking for answers for 4 years.

    i too am totally degected..

    ibs or chronic pelvic pain was my diagnosis.

    so lets have a bit of your story and try to compare notes.

    how did you get around to thinking this is your site.

    are your symptons different now from when it all started.

    when it all started with me, igot a fever and then intensely cold.

    i got terrible indigestion and heartburn and a stabbing in the left ovary.area.

    it lasted for weeks.my hair started falling out and i l

     ost 10kls.and my poos were sludge.

    now i,ve put the weight back on but i still suffer with the gastritis type pains.and of course the beastie which i believe is causing the problem,.

    so if it was acute, now its chronic pancreatitis,

    ct and mri see nothing wrong with it.

    whats happening with you?

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  • Posted

    I feel your pain. Literally! My story is very similar. Had gallbladder removed due to sludge..but would've thought they were lying if I didn't have the scars from surgery...bc I was still in a lot of pAin...making frequent trips to the ER. Had 1 dr tell me I had "Tracy's version of irritable bowel" another said "gastritis" or "hyperalgesia"...& ER trips in btwn where they treated me awful & accused me of being a drug seeker bc all my blood tests & scans came back normal. (Enzyme levels only showed high a few times at the beginning...& now they never change...which is very common in CP but unfortunately it's also common to have the Drs not know that...!!) had MRI's ERCP's CT scans. All normal. After switching Drs a few times...& at that point...having suffered for two years..& them not finding anything..I started to think maybe I was crazy..or that I was just a wuss..& had a low tolerance for pain. & while the dr was 100% sure it was not CP...there was only one test left to do.& that was the EUS. Dr didn't want to do it bc it was a little more invasive..& could cause an acute attack. But I begged him to do it bc I needed to know. & I think he agreed bc he thought by proving me wrong it would shut me up! But he was the one who was wrong! it is a terrible thing all around you are going through. & I am sorry that you are. What tests did you have done so far? & from my experience my advice is..find a good dr. If you're not happy with the care or the results. It's your body. You know it best. Do some Research find another & repeat as necessary. There are so many horrible things that come along with this illness...& I think the key is having a great dr. Good luck.
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    • Posted

      How long were you having troubles before the EUS diagnosed your cp? This is only test I haven't had. I've had upper left pains that go through to back and stab under left breast, left side and back, feeling of being full right up to my throat and having to wind myself! General ache and gnawing pain always on left. Never bad enough for a hospital visit and no loose stools, vomiting, pale, oily stools at all. In fact I'm mainly constipated. I continued to drink until last year or so as I didn't associate the pains with alcohol until the last year when I realised they are worse the day after. In this case after 6 years of symptoms and continuing to drink would something of shown on one of my tests? I've had tons of blood tests nothing ever elevated, stool sample, ct, endoscopy, ultrasounds, colonoscopy and quite recently an MRI specifically to look at pancreas as this was my main concern but it also looked at gallbladder, etc mrcp I think it was. They said pancreas and all ducts are normal and discharged me with ibs. Reading stories like yours make me worry so much that something has been missed! I just can't relax and trust them until I know for sure but worried I never will! I'm 33 yr old female this all started at 26 . I've had enough!
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    • Posted

      I hear ya! I suffered two yrs undiagnosed & towards the end...(partly bc of the way they were treating me)...I thought maybe I was going crazy! Had my gallbladder removed right before...or really...that's what they thought my problem originally was..but had no relief. Had all the same tests as you! Every single one. All came back normal...blood tests elevated very little at the beginning...but never again after that. Which is common but unfortunately...there are way too many Drs that are uneducated in the area of CP. especially ER Drs. The last & only test left was the EUS & I begged the dr to do it bc I had to know! The EUS goes right down into the pancreas. It can see scaring, duct dilations, inflammation, & everything. This is the test to have! My dr for sure did it thinking he was going to prove me wrong & shut me up...but instead was at my bedside when I woke up...with a "tail btwn his legs" "I'm so sorry" look on his face! Although those words never came out of his mouth! So the EUS is the test to push for. & if your dr doesn't want to do it...find one who will. You need to know! Bad enough you feel so terribly sick...but to then be made to feeli like maybe your crazy is horrific & unacceptable. Good luck. & if you have any more questions. I would be more then happy to help in any way that I can.
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    • Posted

      Thank you I'm sorry you have to deal with having cp. They do speak to you like your crazy! I've been referred to specialist for 3rd time so when I get appointment through I will push for EUS and if that's clear I will just have to believe them I guess! Can I ask what other symptoms you had as my only symptom is the area of pain I get no loose or oily stools, no vomiting, no weight loss which is why I think that they dismiss cp. My boyfriend thinks I'm crazy and that I actually want to have it but I don't at all I just want to know that I 100% don't have it so that I can stop panicking when I have an alcoholic drink or that I'm doing more damage to myself! I don't get any pain after fatty food particularly either. This has been going on 6 years now and just before last Xmas I had MRI especially to look at pancreas and everything looked perfect all ducts were fine etc. I just can't help worrying that it's been missed! Would something show after 6 years of this with continuing to drink quite a bit until about a year ago when I linked pain to drinking and cut down loads. I've never had acute attack which docs said I would have before it turns chronic, my levels have not once been elevated in the 6 years of tests also.
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