Discussions By Condition: I cannot get a diagnosis.

Mystery abdominal pain

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • November 5, 2007
  • 08:49 PM

Hi :)

My daughter is 13, and was previously in good health - she'd had some previous abdo pain when she was a lot younger, which the doctors then put down to IBS, but which went away on its own without further investigation.

About seven weeks ago she started getting abdominal pain in the lower right side. The doctors gave her paracetamol and ibuprofen which didnt touch it. They they prescribed codeine which just made my daughter feel very nauseous and didnt really do anything for the pain. After a week the pain got quite severe suddenly so I took her to hospital who gave her an ultrasound scan which showed nothing. She was then given a laparoscopy, which found a normal burst follicle on her ovary and some small cysts on her fallopian tube (which they said was perfectly normal and unlikly to cause her these problems). They discharged her without further investigation, saying that the probable cause was the burst follicle.

The pain persisted, and after several visits to the doctor, a kidney infection was diagnosed - which the doctor advised was probably the result of the laparoscopy. Antibiotics were prescribed. The pain got a lot worse that evening, so I took her to the out of hours doctor to see if stronger painkillers could be prescribed. This particular doctor got rather impatient with my daughter, since she was reluctant to talk to him, due to the intense pain she was suffering. He asked if she had "tummy pain" which confused her since we had already told him this several times, and told him exactly where the pain was and what had been diagnosed by the previous doctor. I tried to explain to him that all we wanted was some painkillers, but in his impatience he prodded her quite hard in the region of her appendix with pointed fingers, causing her to scream in pain and refuse to allow him to carry out any further examination. I thus took her back to the hospital, where the diagnosis of kidney infection was confirmed, and stronger antibiotics were prescribed.

She was given antibiotics and the pain decreased for a few days. Upon finishing the course of antibiotics one Friday afternoon the pain suddenly got a lot worse that same Friday evening. We went back into hospital where they carried out a further ultrasound scan, where it was confirmed that everything was normal.

The pain persisted.

We went back to the emergency department again a few days later, when she was booked in, and eventually given a further laparoscopy to remove the cysts on her fallopian tubes (I forget exactly what they called these cysts). The gynae said that he doubted that this was the problem, but at least now any gynae reasons for this pain had been ruled out.

This last laparosocopy was last Friday (today being Monday) and the pain is still persisting - and getting worse daily.

Does anyone have any clue as to what this pain may be. The gynae has ruled out any gynaecological reasons, her urine tests negative for infections, and blood tests show nothing. Her appendix was checked on both laps. and found to be perfectly normal.

The pain is around the site of her right ovary/appendix, does not move anywhere, does not come in waves, is not in her back, under her ribs, shoulders, or anywhere else, just this constant "ripping/twisting" pain (her words).

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12 Replies:

  • I would have a colonscopy done. The pain could very well be coming from her ascending colon (first part of the large intestine) or ilenum (end of the small intestine). The constant ripping/twisting could be from inflammation/ulcers combined with the constant movement in the intestine. Crohns Disease often presents itself with pain unlike ulcerative colitis where blood is seen more often. I think its worth looking into... Keep me posted!Kiera Forgot to say that IBD often starts in teens and in people in their early twenties...
    Anonymous 42789 Replies
    • November 5, 2007
    • 10:40 PM
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  • By way of an update - she's now had tests for Celiac disease, pancreas and thyroid problems, all of which have proven negative. They seem to think now that they've "checked everything" and that the problem is probably something psychological - she has now been referred to the Child and Adolescent Mental Health Service. Apart from blood tests, as far as I can tell absolutely no investigations have been done with regard to anything gastric. No stool samples, no scans or x rays, or endoscopy/colonoscopy have even been suggested - despite my advising the doctors that she has had (albeit mild) problems with her stomach/bowels on and off since she was about 7 or 8. They seemed fixated on the gynae aspect, and now that has proven negative its almost as if they've given up and want to pass the buck to the psychologists.However, I have today been browsing the internet (as you do) and come across something which may be a possible cause for her continuing pain (8 or 9 weeks so far)It would seem that the various things I've been reading about Mesenteric Adenitis would fit my daughter's symptoms in a lot of ways:(i) lower right abdominal pain(ii) pain unrelieved by even strong painkillers(iii) usually found in under 15's (although can be found in adults, who have reported very intense pain)(iv) continuous nausea - a lot of the time without actual vomiting(v) headaches (she's been getting a a lot of these lately, I was putting it down to the stress, the doctors don't seem to feel that these are part of the ongoing problem either)(vi) pain worse on rising and in the evening(vii) no appetite(viii) lasts several weeks(ix) often diagnosed as "psychological" because without the appropriate tests no obvious cause can be found(x) presents as appendicitis-type pain(xi) very occasional diarrhoeaIt would appear that this can be caused by a viral infection - I can't think of anything in particular that may have caused it in my daughter, but she has had a lot of colds this year. Any thoughts? Anyone had experience of this condition?
    Anonymous 42789 Replies
    • November 17, 2007
    • 05:38 AM
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  • Every single one of those symptoms is found in crohns disease as well.... Kiera
    Anonymous 42789 Replies
    • November 18, 2007
    • 00:00 AM
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  • You said she screamed when her appendix was pushed on. It's possible to have problems with the appendix weeks or even months before it makes itself known via blood work or imaging, especially since they gave her antibiotics. I was involved in a case where a young man had a flap floating in his appendix and was in and out of the hospital many times before the flap finally settled and caused the appendix to flare completely. The flap was found by pathology after the appendix was removed. I wouldnt hesitate to take her yet again to the hospital everytime this happens until you find out for sure what is going on.
    CassAnn 25 Replies
    • November 18, 2007
    • 00:11 AM
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  • Im going to have to do some serious bullying of the hospital or her doc into referring her to gastro. For some reason they seem reluctant to test her for anything except gynae problems. I'll make an appointment to see one of the more compliant GPs on Monday. I shall keep you posted.
    Anonymous 42789 Replies
    • November 18, 2007
    • 07:33 AM
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  • my 24 old son has had mystery abdominal pain for 18 months;we've been everywhere, even Johns Hopkins. Crohn's is oft suggested but diagnosis is very difficult apparently. He is now on regular pain meds to be able to exist. We continue to seek any and all answers tho he has had EVERY diagnostic test available. I know what you're going through and know you have to keep plugging and doing a lot of the research yourself to suggest ideas to the docs. JH docs told him some folks are never diagnosed. We refuse to accept that and keep searching. I urge you to do the same. Best of luck
    Anonymous 42789 Replies
    • November 19, 2007
    • 01:55 AM
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  • You should have a CT done on your daughter. My daughter is 14 and she has had numerous visits to the er for abdominal pain. The first was when she was 12. They said it was due to her PCOS. The latest was diagnosed as Mesenteric adenitis by CT. It still worries me a lot becasue there are many other things that can cause this pain but I believe a CT would be best at this time. Good luck.
    Anonymous 42789 Replies
    • October 27, 2008
    • 01:41 PM
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  • Definitely CT. If the pain is this severe. But I would take the appendix out even if nothing shows up. The symptoms are often very obscure. I know about a patient who suffered severe appendix related pain for 7 years - nothing wrong has ever showed up in tests. He finally decided to get his appendix removed anyway and never had the pain again. Also I wouldn't rule out psychological causes so quickly. Especially if she seems to be resistant to strong painkillers (very typical symptom as well as severe pain, headache, diarrhoea and no appetite). Anxiety, depression might be the cause. As her doctor I would give her lower dose (0.5mg or 0.25mg) of Diazepam or Clonazepam (Anxiolytic drugs) and see if the pain lessens or goes away. If yes then it's more than very likely it is psychological. If not than you would know to focus on the possible physical causes. Again CT scan would be appropriate. Good luck.
    Anonymous 42789 Replies
    • November 9, 2008
    • 00:38 AM
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  • I have been to alot of Doctors testing, blood work and all the pains you just said about your daugter is happying to me right now the pain is way over a 10 mark but I don't have no more $ so I have to deil with the pain and Qs that well never be anwserd from no doctor becuses they do not no the anwser the are stomed, A Doctor finely told me something I have been waiting for is respect he told me I am sorry I do not no what is roug with you but I well help find out if you want to go further with this. But of course I can't I have no more $ to do that so I diel with my pain it hord but I do it. He is one doctor that did not tell me its all in my head he really wonted to help or try to help as best he could. I just keep preying that there is a cure of this mystery abdominal pain its hard to have and then try to tell everone your fine I AM NOT FINE but I do a good job hideing it. It hearts so bad I cry myself to sleep alot. I feel for your Daugther I am sorry God Bless you and your Daughter
    Anonymous 42789 Replies
    • October 24, 2010
    • 03:07 AM
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  • Have you had any other luck finding out about this mysterious pain? My girlfriend has been going through an almost identical ordeal for about 5 or 6 months and they are now saying that it is all psychological. The pain is so bad that she is on disability and cannot leave her apt. All she can do is lay in bed and take handfulls of painpills that were given to her in an attempt to aleviate a small portion of the pain.She can literally point to the exact spot on her stomach where it hurts. It is about halfway between her ribcage and pelvis just to the right. She has had ultrasounds, CT's, bloodwork... you name it! They have ruled out ulcers, hyrnias, cancer, appendix, gastro, gyno... all of it! She says that the pain almost feels like there is something in there eating at her from the inside. It has completely destroyed her life and there seems to be nothing that can be done about it. Any helpful info would be a miracle at this point!
    Anonymous 42789 Replies Flag this Response
  • I have the exact same pains! I can no longer go to the hospital because they all think im crazy or a junkie looking for a fix. I am NOT a junkie, in fact most painkillers do nothing for me other then make me itchy. I cry myself to sleep many nights and some times i cant even go to work it is so bad. I had surgery to have a 3.5 cm cyst removed from my right ovary but it didnt solve the problem. I was tested for endometreosis and all my blood tests come back negative for anything... Im slowly starting to think maybe i am crazy but the pain is so intense that i know its real. Best of luck and i hope they find out what the cause is.
    Anonymous 42789 Replies Flag this Response
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  • This post is going on for years. I have this same pain right side halfway from ribs to pelvic. Every test, except gi, and no answers. I wish that someone with success posted back with an answer.
    Anonymous 1 Replies Flag this Response
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