Undiagnosed abdominal pain for 5 years. Help?

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I am a 21 year old caucasian female. I have had non specific abdonimal pain for 5 years. I have seen a gastroenterologist, a gynocologist, and many more doctors in the ER and walk-in than I can remember. I have had many abdominal, external and internal pelvic ultrasounds. I have had a gastroscopy with negative biopsy, colonoscopy, CT scan with contrast, xrays, and all were "fine". My doctor is going to be suggesting exploratory surgery soon...

My symptoms: sharp, stabbing pain in the lower left and right quadrants. The pain is intermittent. Episodes usually last anwhere between 5 minutes to a few hours. They happen at least 1-2 times a week. Abdomen is slightly rigid and pain worsens with touch (even when an episode isn't happening, pain with touch/pressure). Severe menstrual cramps, but it is a different pain from the abdomen. Tired all the time. Bruise easily. Overly sensitive to external pain. Joint pain in the hips and knees (can be severe at times), neck pain, upper back pain. Low B12 levels.

The symptoms continue to get worse at time goes on. I have been to the ER more than 5 times for the abdominal pain and each time they tell me nothing is wrong.

Something is wrong and I need answers. Thoughts?

 

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15 Replies

  • Posted

    I get that kind of pain with gas. I get more gassy with some foods. I have hound that it is better to eat a little, just eat more often. A full meal does me in, so I don't do that anymore.

    The pain is pretty bad. You may be dealing with irritable bowel. Ask your doctor about that. Try less food, more often, for a few days and see what happens. I have also noticed that food combining is important. Some feeds just don't digest well together, no matter how good it tastes. You can search food combing. Hope this helps,

    Alexis

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    • Posted

      I've tried to map it out with what foods I eat, but I can't find any patterns or common things that cause the pain. My appetite and food haven't really played a factor in the pain. I will try again to write down everything I eat and see if it's related. Thank you smile

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    • Posted

      In case it is gas, (and that pain can be awful) look up gassy foods. You may find something that helps, Honey.
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  • Posted

    Do you notice the abdominal pain getting worse just before your period? I know you said you have bad menstral cramps too.. You said you went to an OBGYN - did they suggest endometriosis at all? The pains in the upper body kind of make it seem like it wouldn't be..

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    • Posted

      The pain in my abdomen stays relatively the same. It doesn't get worse before/on my period. Just the bad cramps. It's weird to describe, but to me it is a completely separate pain. The cramps are more achy and throbbing rather than sharp and stabbing. They have said that Endo could be a possibility. I'm assuming thats what they will be looking for during the laproscopy/exploratory surgery. 

      My doctors have said that too, all of the symptoms don't completely match up to Endo, so I guess that's why they have waited so long to cut into me.

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  • Posted

    It's frustrating.

    Just ER is not responsible to find out when your life is not in immediate danger. That's what they assess and exclude.

    Of course you always could develop something else on top of it, you need to go when in agony, but if it's not an obstruction, appendicitis, a ruptured organ, stroke, broken bone, bleeing, septicaemia...they usually pump you with painkillers and refer you to go to GP and specialists since time is on your side.

    It's annoying, I know.

    I am quite astonished though that a diagnostic laparoscopy (I guess that's what you are scheduled for) wasn't done earlier after repeat same problems.

    Have you tackled your VitB12 deficiency (tablets, injection)? It is not solving the root cause, but you don't need ohter problems on top of it secondarily.

    Now some things jump to mind:

    Have you ever trialed abdominal migraine medication (e.g. pizotifen) for a month.

    If possible, could you ever get a blood test during an episode, that checked for C1-INH enzyme and C3, C4 (complement)? You tend to bruising, so C3, C4 would be indicated. (Check out hereditary angioedema, if it would fit and with this blood test during an episode, it can be pointing towards or away. one does not always have visually swollen tissue)

    If possible, could you have a very easy porphyria urine test (please check out all kinds of porphyria, there are forms that are only causing abdominal pain) also during an episode.

    Your doc sees you and can assess if anything of those mentioned would make sense.

    First it has to make sense to you, too. ;-)

    Best of luck!

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    • Posted

      I know sad sometimes the pain feels like appendicitis and I can never tell if its the same pains or if there is something else wrong, so I always go to the ER when the pain gets to a 7 or 8 out of 10.

      I have dealt with the B12 with injections and take tablets now to keep it up.

      I have not tried abdominal migraine meds. That would be an interesting thing to look in to. None of my doctors ever mentioned it. 

      They started to look for pain management for me rather than anything curative. So I was taking low-dose anti-depressants for a while until they caused me some issues with my stomach.

      I've had the blood tests done when I go to the ER during an episode, but I'm not 100% sure what they actually test it for. I will look into that as well!

      Thank you for the suggestions! It definitely helps to broaden my search.

      Appreciate it!

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    • Posted

      I feel for you.

      BTW: My suffering daughter is taking the pill Levlen to avoid those horrid (different) cramps and luteal hemorrhagic cyst bursts on top of it, pain would go 9/10 unable to reach any ER - can't stand up- and knowing what it was on top anyway.

      We are on the list to get tested for FMF (familiar mediterranean fever) genetically and I will ask, if MR venogram and angiogram made sense.

      (see pelvic congestion syndrome)

      We are trying neuropathic pain medication via pain specialist right now (Amitryiptyline, Gabapentin - now changed to Pregabalin) to no avail and being in more than 2 months, which is the usual time to take effect.

      The waiting times drive us crazy a) to see docs or get referrals and then wait again, b) to wait for something to experience, if treatment trial helped or not, which is diagnostic in itself.

      In our desparation I have sent hair in to be tested for heavy metals and aluminium (since there was so exposure last year) privately and taking conservative measures already in form of drinking high silicat water, cucumber daily, magnesium malate.

      In our desparation we also seek Eastern medicine in form of acupuncutre, cupping and drinking yinyang tea, also getting 'alignment'-cracking spine into place.

      Those measures are only in place past 2 weeks, so no idea if it will help at all.

      I have the feeling in our case it has something to do in the small intestine since grainy things like munching nuts or seeds seem to raise bar 1-2 out of 10 for a week (not reached with gastroscopy and colonoscopy) or endometriosis (that was not checked for small atypical one in diagnostic laparoscopy, appendix taken out, adhesions cut, gastroenterologist happy to find a cyst, closed up, pain stayed, cyst gone.)

      Capsule endoscopy is the only way to see the lining surface of all the small intestine.

      Now supplied you with even more thingies to look into and maybe ask doc, what he/she thinks about xyz.

      ;-)

      (The blood C3, C4 actually is also a good marker, if it could be a systemic autoimmune disease like Lupus. Levels go down)

      If you had any luck with anything, or any findings or any suggestions, please let us know too.

      Best of luck!!!!!

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  • Posted

    Update: it hurts when I press down on my abdomen. I have to apply a bit of pressure, but when I do I feel something hard. Once I hit the hard part, I feel pain locally and it travels upwards a bit. It's similar pain to my recurring pains.

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  • Posted

    Hi Alexislee

    Have your docter ever been tested you for harmonal imbalances Alexislee. 

    Consult a endocrinologist to check for Female Comprehensive Hormone Panel test.

    It will give you a better idea about your hormonal health which might be the cause behind your abdominal pain for so long.

    This test includes :-

    Chemistry Panel (Complete metabolic panel with lipids)

    CBC

    DHEA-S

    Estradiol

    Total Estrogen

    Progesterone

    Pregnenolone

    Total and Free Testosterone

    Sex Hormone Binding Globulin (SHBG)

    TSH

    Free T3

    Free T4

    Cortisol

    The hormones we think of as female hormones also have significant effects on the health of the GI tract(abdominal health).

    The imbalances of these hormones can influence the movement of food through the intestines—some by speeding the process up, causing diarrhea, nausea and abdominal pain for several years and others by slowing things down and causing bloating and constipation.

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    • Posted

      I do know all of those parameters,

      but what I don't know - maybe you - what the results regarding female mainly ovarian hormones (assuming thyroid, cortisone, chemistry panel normal, as they are in our case)  

      and sense would be, if the patient took the contraceptive pill

      (30 microgram of ethinyloestradiol

      150 microgram of levonorgestrel in our case)

      ???

      Secondly: what would the treatment be if it was thyroid, cortison, chemistry were normal, but some sexual hormone related imbalance meaesured (progesterone being purely luteal phase hormone anyway, so not abnormal not to find it)

      thirdly: would someone on the pill still get purely hormone imbalanced abdominal pain?

      (in our case had abdominal pain before and now during pill, just the menstrual cramping pain on top if it gone naturally)

       

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  • Posted

    Hi

    I have had similar pains for 12 months, also no diagnosis. Did you ever discover what was wrong?

    Lin

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  • Posted

    Can you locate the pain (on either side) under a finger tip?

    I believe it hurts more when you press down you've said that.

    Try this lying down and note how much pain you feel.

    Then try raising your head and then pressing the same spot.

    Does it hurt more than with relaxed abdominal muscles?

    If so, this is a positive Carnett's test.

    Such pain can be caused by

    undiscovered hernia

    adhering appendix, with appendicitis (unlikely after 5 years - or so I believe)

    haematoma (unlikely after 5 years - or so I believe)

    or

    ACNES - Anterior cutaneous nerve entrapment syndrome. Google that.

    If you have a negative Carnett's sign it's unlikely to be ACNES - but let a doctor (who knows about the condition) decide this for you, not a guy of the internet.

    Good luck in your search

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