Discussions By Condition: I cannot get a diagnosis.

Chronic lower abd pain... IC?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • June 16, 2009
  • 05:42 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. 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.

~ER docs usually say Ovarian cysts, which doesn't seem right to me.
~ER docs always test for appendicitis becuase 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 doesn't think so, but doing a cysto w/ hydrodistention and possible biopsy on August 5th.

This is a long ways a way for me, especially since these episodes are occuring 2X a month lately. 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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5 Replies:

  • Bumping up. NO ONE has had this or knows someone that has?? Am I the lone sufferer of this specific pain?
    Anonymous 42789 Replies Flag this Response
  • I had several of these symptoms. I went through a few misdiagnoses. Caused several days of missed work or working while in extreme pain which was extremely difficult. I changed ob/gyn's. The new one finally got to the bottom of my pain & I feel better. I had bad endometriosis but also have crohn's disease which only added to my suffering. Surgery - Hysterectomy, removal of adhesions/scar tissue & 12 inches of my colon. Good luck. I totally understand your pain.
    Anonymous 42789 Replies Flag this Response
  • I am a 29 year old woman and I have very similar symptoms. I have gone through so many tests and even my appendix was removed. I can totally understand your situation as mine is so bad that I had to leave my job cos of this. I contacted many docs and one of them just replied. I just want to share it with you. He said that as my symptoms started last year shortly after a laparoscopy they probably hurt a nerve and there is a syndrome called ilioinuinalis syndrome in which I may be suffering from. Im going to a neurosurgeon on Monday just to see if it might be the cause. I know what you feel!!!Im depressed as well and want to end this terrible state!
    kubu62 6 Replies Flag this Response
  • Maybe it's time to ask for an exploratory Laparoscopy ?Check what's going on there. Might seem a little extreme for some but when your in pain well.......Dozens of tests (CT scan Ultrasound etc) never picked up my appendix problems or the fact I had endometrosis. Was discovered during exploratory LapMight be something to think about and ask your GP if this could be an option. Sorry I don't have anything more to offer, just hope your pain go :)Samanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies Flag this Response
  • send me an e male, poodlesamy at live dot comBest Regards.
    poodlesamy 26 Replies Flag this Response
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