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Hi. I am hoping someone can give some possible answers to a horrible odor I have had now for several weeks. I have dysautonomia, but have not been pinpointed as to a specific syndrome yet. My symptoms are very progressive. I have alot of pain below my belly button and have noticed a very offensive odor. It is not from urine. It smells like something died inside of me. We plan to see a urologist but like we all know, most regular doctors don't understand this disorder. Do you think this is related to dysautonomia? I will be traveling from LA to VA soon to see the specialist there. I have heard that he is one of the best. My cardiologist has prescribed florinef to help regulate my blood pressure but that is all I am taking right now except benedril when my itching is so bad that I can't stand it anymore. I do try to just cope with the symptoms as best I can because I don't want to find myself on too many medications. It seems every time you go to a doctor, they want to put you on something else. That is what I will be glad to see the specialist. My neurologist is very understanding but admits that he does need the guidance of the specialist b/c the autonomic nervous system is too involved and there are thousands of tests that could be run. Please let me know if anyone is also having this odor problem. I do see that several are seeing a urologist and was thinking maybe this is why. Also my monthly cycles have gotten much shorter than before I got sick. Thank you for any info you can provide. Chrissy

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Hi Chrissy;

You say you have pain below the bellybutton, a bad odor, irregular menstrual cycles and it is not from urine? To me it sounds like a gynocological problem, possibly an infection. It would be a good idea to see your regular gynocologist, who does your pap tests, to do an exam. Take care!

KathyP :lol:

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Hi Chrissy -

Like Kathy, I was going to encourage you to get a GYN consult. Yeast infections can have a severe odor, as can many other GYN problems. In terms of Uro problems & why most on the board see Urologist, I obviously can't speak for all but to the best of my recollection some have IC, which can cause lots of pain amongst other things, and some have more directly nerve-based issues of incontenance or retention, some with the "neurogenic bladder" diagnosis. Often as an offshoot of these things, some have frequent bladder infections.

Personally I have a neurogenic bladder...often don't feel as if I have to go at all & if I do it's long past when "normal" (my bladder is already too full). I also cannot go on my own anymore at times & never empty fully so have to catheterize myself several times a day. In terms of pain, I get belly pain when I don't catheterize as I should from my bladder overfilling. And some burning when I've had UTIs.

I hope you're able to get some answers for yourself soon!

Take care & let us know how things go,


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