Discussions By Condition: I cannot get a diagnosis.

Chronic lower abdnominal pain

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: ConfusedByPain
  • July 10, 2009
  • 02:55 PM

Hello all. Hoping someone could help with a problem I've been having for a few years.

*Extreme lower abd pain that can starts out so bad I want to throw up from the pain.

*If I lay flat on my back for a few hours and barely move (even deep breathes hurt) the pain subsides to a tolerable, but still limping, level. Sitting is the worst position.

*Pain is generalized to entire lower belly (skin on belly is usually hot to touch when episodes occur as well). No actual stomach ailments coincide with pain (diareah, gas, etc.)

*Generally starts in the middle of the night (3, 4 AM) and wake up with over filled bladder (sometimes have spillover in bed). Run to the bathroom and that's when pain starts, as soon as I sit. Have to crawl back to bed thinking I'm dying.

*Started in August 2006 with occurances that lasted a day and happened around once a month. Now they last around 3 days and happen anywhere from 1X every 3 months to 2X a month.

*Today, pain just started right now... in the middle of work... didn't even have to use the washroom. This is a new experience for me.

*No real problems with frequency. Some urgency and leakage issues but not to the point that most IC sufferers I've heard from have complained of... my only real symptom is the debilitating pain.

~ER docs usually say Ovarian cysts, which doesn't seem right to me.
~ER docs always test for appendicitis because of severity and location of pain.
~Primary Care doc thought Endometriosis, Gyne said probably not (had a 3-day occurance during pregnancy in March 2007... guess Endometriosis doesn't act up during pregnancy)
~Gyne said probably Interstitial Cystitis...
~Urologist said bladder looked great after cystoscopy w/ hydrodistention... but still perscribed meds for IC (Elmiron) because "it can sometimes help pelvic pain"
~Now GP won't send me elsewhere to look for cause of pain... because I am being perscribed the meds for IC (even though I was told I don't have it). So Uro is screwing my chances of finding out what IS wrong with me by giving me these meds and no diagnosis.

I'm losing too much work due to this. Just wondering if anyone else has had anything like this. Does it sound like Interstitial Cystitis? Anything else it could logically be?? Any help would be greatly appreciated. Thank you!

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1 Replies:

  • Your symptomatology is medically called "chronic pelvic pain" (CPP) and this may be due to gynecological or non-gynecological causes. In your case, you have been evaluated by your primary care physician (PCP), a gynecologist, and a urologist and the consensus seems to be that painful bladder syndrome/interstitial cystitis (PBS/IC) is the likely cause of your CPP. PBS is distinguished from IC by absence of changes in the bladder wall. While IC would show changes on cystoscopy, PBS would not. The symptoms and management are the same, and both are considered to be part of a spectrum of the same disorder. I don't think your urologist and PCP are being intentionally malevolent to "screw up" your chances of finding a cause. The other issue to consider here is your "losing too much work due to this." Assuming that you mean pain is causing you to lose work, I would recommend you bring that up with your physician and discuss strategies for managing pain, which would be the most important concern. For your information, I have provided links to articles on CPP and PBS/IC. http://www.uptodate.com/patients/content/topic.do?topicKey=~777HbAIIypxfsO http://www.uptodate.com/patients/content/topic.do?topicKey=~w/wLWlDD0gziKX http://www.uptodate.com/patients/content/topic.do?topicKey=~TTA53XRqqDzJs1A I hope you find this helpful, and wish you the best.
    m3dh31p 69 Replies Flag this Response
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