ihurttoo
02-12-2006, 04:27 PM
Hi! I dont know if I have this in the right place or not, but I'd kinda of like some opinions. I was d/xed with IC about 3 yrs ago. My symptoms are freq/urg and pain. I have also have freq UTIs/bladder/kidney infections. (I had 10 last year. (And yes, I was tested after each one to make sure the urine was okay. ) Most of these infections took 2-3 courses of antibiotics to clear up. But once I got one the right antibiotic, I always felt like I went into remission, (IC seemed to leave me) until the next infection came in a few weeks. I realize that most ICers dont have the frequent infections. I also have a consistenly high SED rate. Blood work always shows inflammation, even when my infections are "gone". My white count also stays abnormally high, and I keep a low grade fever most of the time. When I get the kidney infections, it is always the same kidney. :loco: :hmm: Oh, and one more thing, I bruise really badly. Like from holding a pen sometimes, my fingers between will be bruised. Sometimes I will bruise on the side of my body just from laying in the bed. I sometimes look as though I have been beaten severly, but the bruises do not hurt. I still dont know what is up with all of this. It only happens about 2-3 times a year, and it takes forever to get an appt with a hematologist, and usually by the time my appt time comes around, of course, it's not doing it, so I cancel and try to hope that it will be happening at the next one. I dont know what is going on there, but it scares me. I dont leave the house at all when this happens, b/c I literally look as though I have been beaten. I did a search for this on the boards, but have not seen any of you yet with this particular symptom, so I didnt know if it is connected to the IC, the Lupus, or if there is something else weird going on in my body. And I dont know if all my weird stuff is conncected somehow. If anyone else has my symptoms, PLEASE tell me, I really want to know that I am not out there by myself on this. Anyway, moving on, I was d/xed with IC with the PST and the questionairre (forgot what it was called, but most of you know what I'm talking about.) Anyway, he started the DMSOs immediately, Elmiron, among other meds and the IC diet. No response. Except that I feel remarkably better after the bladder instills. (I mean before I get up off of the table!) Presumably this is from the marcaine, although, I have noticed most of you dont feel that great after them. (once again I seem to be atypical) After a while, he began to suspect endo and it was decided we'd do laproscopic surgery and bring in a uro at te same time to do a cysto/hydro w/a bladder biopsy. (My treating dr is a gyn) The uro sees nothing. No hunner's ulcers, no glomerulations, no nothing! But the lapro showed endo, and pelvic adhesions that had grown thru the lining of my bladder and also endometriois was everywhere as well as cysts that were bigger than the ovaries that they were attached to. They figured all that was causing my pain and bladder issues. So then, I ended up having to have a total hysterectomy last fall at age 33. He thought this would help with my pain. It helped it everywhere except my bladder and fibromyalgia in my upper thighs, sides, and back. After the hysterectomy, I got another kidney infection, and ended up back in the hospital. They did an x-ray with contrast dye injected. And a pelvic cat scan. Nothing showed up here. So no one knows why I keep having these repeat infections. I have recently been given 100mg Macrobid to take daily to try to stave off future infections. I guess what I am wondering is, would you see a uro to try to find to cause of this or an infectious disease dr, or should I just think the cause is unimportant and just keep taking antibiotics the rest of my life. Last week my rhematologist told me she feels pretty sure I have Lupus now. I have positive anit-nuclear antibodies. (she has said this before, and then said no, and now she's saying it again.) I am so frustrated being bounced from dr. to dr. I just want to know if you think an infectious disease dr could poss help me. And if i went to a uro again, if there anyother test I ought to do that I havent done yet that might tell me something. I know I am reaching here, but I would love to find out it is just a single complicated infection that I just never got rid of and not IC. I know it's probobly wishful thinking, but maybe even,"Here, take these pills, they are high dose, but it will wipe out all that crud youve had for years. Oh, and also take this pain medicine until you arent hurting anymore, (but you probobly wont need them more than a day or two.) But if you do need more, call me and I 'll be glad to help you. I want to keep you comfortable and fuctional in the mean time." OKAY!! I KNOW!! I am a dreamer, but dose a same, single, chronic infection that could be treatable seem POSSIBLE to any of you who are objective? Please someone respond. I am going to a pain clinic 2 1/2 hrs away Wed, b/c I can no longer bear living like this without continuous pain medicine, but if there was any other hope for a cure for me, I guess I just wanted to make sure I have exhausted EVERY option before I admit defeat. Suggestions, anyone??