Severe abdominal pain for 5 years. Please help!

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Hello 

I'm a 22 y/o female who has been suffering from severe stomach pain for 5 years. The pain isn't always there and comes in 'flare ups' which are sharp and unbearable, and result in A&E with morphine. The pain is located just above and to the right of the belly button and can reach up into the stomach. The flare up frequency varies between a week and 3 months and I don't suffer from any other symptoms. 

I have been through gynaecology, gastroentorology and the surgeons with no answers and they've now given up. 

Tests which have come back negative: Blood tests, stool/ urine sample, upper and lower ultrasounds, CT enteroclysis, 2 laparoscopies (only showed endometriosis), tests for porfyria, tests through a gamma camera. 

Has anyone got any ideas on a cause of this? I am absolutely desperate for an answer! Any suggestions would be absolutely incredible!

Thank you so much

Meg smile ?

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6 Replies

  • Posted

    ooof, through the works.

    Endometriosis can be quite painful though, can't it?

    Has abdominal migraine been suggested and medical treatment trialed to see if it worked? 

    How was porphyria tested?

    (I had a doubt about our one and only lab here and one and only one of spontan urine test, as only done once per month and only a 'screening qualitatively' done for porphobilinogen, only if positive then quantitative test performed. Now I don't know about any screening, that picks up levels under 3fold the upper level. The one by a certain company, that was semiquantitative and quite good screening, discontinued 2014 and replaced by a qualitative = with numbers, not positive negative, test. So which screening did they use in my case? I never got an answer but when have seen the result I knew, that could be false negative due to length (transport, storage of urine, porphyrias are very sensitive to light and test method of 'screening'wink

    So it would interest me, how your porphyria test was done please.

    TA!

    If only a one off urine test, waiting for weeks and 'screening' only since negative, it could be false negative. Could be.

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    • Posted

      goodness, it's late, correction please: 'replaced by a quantitative test = with numbers'. sorry for confusion.

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    • Posted

      Hi Sanya11314

      I really appreciate your response to this thread. My endometriosis is painful but have now been able to control it through contraception. They ruled it out as a cause of this pain by inducing the menopause for 3 months- the pain still occurred.

      To test for porphyria, they covered a sample put in tinfoil and gave strict instructions about not exposing it to light (hence I did it in the dark). This was sent off to a specialised lab in Cardiff.

      What is an abdominal migraine? I've just Googled it and it matches my symptoms pretty much exactly but they say it occurs in children. Is there a formal way to diagnose this?

      Thank you once again. I am so grateful for you response.

      Megan

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    • Posted

      Good, still a one off porphyria urine test can be false negative, especially the 'porphobilinogen' part if only qualitative and if not highly positive. (as ALA...is usually quantitative anyway) You could look at the print out of result (you always are entitled to get print out of your results, doc letters ect) and see, if porphyria was quantitatively measured (as it should be) or just some screening test, which I highly doubt in sensitivity up to 3fold above level, which would still be positive, but appear negatie. Tin foil is good though! (There are genetic tests for porphyria, but extremely expensive.)

      Apparently most porphyria react to sunlight with a change in colour, you could take your urine in an open jar into sunlight for 2 full days (good luck with weather) and see if it got red or purple. i never found out if all porphyria products (as it is a cascade of different metabolic substances depending where the enzyme defect sits in cascade) do that colour change or just some.

      This with inducing menopause to rule out endometriosis sounds interesting, too. Thank you! Never thought of that. May I kindly ask what you got to trial? (If too www open, please please message privately)

      Abdominal migraine does exisit in adults too.

      Less frequent, but do.

      The only way to find out is to treat it as abdominal migraine and see if treatment helped. I know it is a lot of 'pills', but it's worth a trial as a fail is diagnostic, too.

      My daughter is 15 and trialed it, 3 different medications, no result, so not it.

      Ah, I can't find it, a case study of a 50 year old man with a history of on off very very sudden abdo pain, excrutiating pain and it was actually some brain chemical missing. Once on some constant antidepressant actually got rid of it for good. If I remember I will come back to it, but I fear I can't.

      We also considered famlilal mediterraean fever (FMF) as a sudden abdo and fever reason, (but her pain is constant). So might want to read into it.

      There is also "Hereditary Angioedema" that I wanted to look into since it's a one off very simple and cheap blood enzyme test and HAE can be only belly related (I guess they would have seen blood vessle swelling during CT though) with huge cramping. Many go undiagnosed for a long time if their skin doesn't show the obvious signs.

      hm, very rare though. But worth reading up?

      All the best!!!

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    • Posted

      Hi Sanya11314

      Thank you once again for your advice smile I might consider trying the open sunlight urine test to see what happens. 

      The NHS induced the menopause through an injection to see if the pain went whilst I was on it. As it didn't go, they concluded that endometriosis wasn't the cause. 

      I might suggest this abdominal migraine, althout it doesn't appear under UK websites? Is it a psychological problem? 

      I have just read into FMF and my temperature raises sometimes during an episode- Could suggest that too?

      You are very knowledgeable about these problems. Do you work in the medical field?

      Thank you once again! smile 

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    • Posted

      Former med scientist, but having a chronic abdo pain child.

      I would not say psychological problem for abdo migraine as it gives it a hint of 'all in your head' and 'abnormal' taste, nope,

      we are huge chemical factories, extremely complex.

      I hate this quick 'anxiety' brush off as if we actively did something 'wrong', nope, no one does. It's our chemical composition that makes us anxious, not the other way round. Believed is also that the gut has a huge brain relationship and a good gut flora providing good chemicals.  Well, whatever helps. Don't be deterred by some 'experts' with their too easy explanations just because we don't know exactly what is happening.

      We know pain is real and if it can be tackled somehow, then let's tackle.

      One does not have to be labelled with a psychological problem to experience abdominal migraine. 

      In FMF fever would always come with it. I would blandly throw the word to doc, what he/she thought of it. 

      I have unfortunately no whatsoever patient experience, no clinical experience. I am a dark room lab person loving chemistry.

      So I can just tell, what thoughts we had with those extreme abdo pain episodes - unluckily nothing found so far, but we did not even have a plain barium meal follow through study, which I find plain neglective.

      Onto next gastroenterologist, who we had to wait 14 months for to be seen...he better be good and nit picking.

       

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