Interstitial Cystitis Forum
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Avatar universal

Could I have Interstitial Cystitis?

I was DX with Fibromyalgia in 2000.   I was so sick last summer I thought I was dying with sweats, orthostatic hypotension, HBP bouts, nausea and vomiting, weakness and fatigue, internal tremors, vertigo and abdominal pain.  When I was at Vanderbilt in Nashville in February  and was DX with the Adrenal and Pitutiary problems I mentioned that I had been having lots of kidney, right flank pain along with excessive urination and large amounts of urination. Lower back pain is almost constant.   I had pelvic pain, bloating and often I have swollen feet and hands in the a.m.   I think I will have to have my beautiful wedding ring cut off soon due to the swelling.  I finally convinced my family doctor to send me to a urologist (my appt is in August) after a CAT Scan revealed no kidney stones or tumors. However...the pain has been getting so bad lately I insisted he send me to a urologist.  He did so reluctantly telling me he did not find anything wrong with me.  I have an aquaintance that was visiting with me the other day...we share information as we both have Fibro.  However...after telling her about my kidney pain and pelvic pain she said I was right in getting in to see a urologist.  She says she has Interstitial Cystitis and it sounds like my symptoms match hers.  My other thought is that I might have Lupus in my kidneys since I have been so ill for over 18 months.  Last summer a nuerologist thought I had chronic meningitis I was so ill but he ruled it out with a Spinal tap.  I had been to see so many doctors I lost count.  None of them were even close on the DX except for one who thought I had an adrenal tumor.  I feel better on the adrenals now as they are finally back up to somewhat normal but the pelvic and kidney thing keep me awake at night and I am getting so overly tired all the time.  I only get about four hours sleep a night.  Any suggestions of what I should ask this urologist to check out?
2 Responses
509188 tn?1211228331
HI, you have a complicated history with multiple problems and possible problems.  Unfortunately we see a subset if patients with interstitial Cystitis who have a whole group of other inflammatory and/or pain disorders and hypersensitivities like fibromyalgia and chronic fatigue syndrome.  If you have pelvis pain, pressure or discomfort related to bladder filling, associated with urinary frequency and/or urgence you may have IC. You do need to see a Urologist that specializes in female urology, or Urogynecologist.  They are trained in pelvic pain disorders and can help you get the correct diagnosis and start treatment. Your fatigue could also be hormonally related, or from lack of sleep from the bladder pain and getting up to urinate at night.  Go to the website: ichelp.org, the official website of the Interstitial Cystitis Association to get basic info and preparation for your clinic appt. Good Luck
Avatar universal
I was able to get in to see a urologist on someone's cancelation.  He feels sure I have Interstitial Cystitis and will do a bladder exam this Wednesday.  He also is doing an Autonomic Nervous System test due to my internal tremors that I have had for two years now but which have lately gotten very strong, at night and awaken me.  He also made a comment to my problems with adrenal insufficiency and fibromyalgia al being connected in a way.  It was very confusing but I think he explained it pretty well or as well as he could for a first visit.  I recently was put on bioidentical homones for both my female hormoens and my thyroid.  I slept like a baby the first 8 weeks but I  think the tremors are what is awakening me.  Thanks for the information and I believe that the urologist has been the most helpful doctor thus far!
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