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  • New-frustrated-scared

    Hello everyone! Im new to this...but I dont think mew to this disorder/disease or however its classified. I was dx about 9 yrs ago because they didnt know what was wrong with me and this was the end all to the urologists answers. NOW of course, its a nother story. for over two years now I have delt with the most horriific pelvic pain, frequency and urgency, feeling like I have constant bladder infections adn just plain miserable. My sex life has really been affected especially the past yera and getting worse. I have a history of ovarian cysts (lost rt ovary when I was 18) and also history of adhesions so I just kept thinking maybe this is all gynocological...until its really now impeading on my personal life, my home life and now my job; IM MISERABLE, always in pain sometimes I cant even sit on a hard chair because it hurts so badly. I saw my Gyno recently he finally said go see the Urologist. Mind you, I had a different Urologist tow years ago when I had severe Kidney Stones, which he lazered out of my ureter only to have punctured my ureter and I leaked Urine thru out my pelvic cavity...I never went back to him. He had the WORST bedside manor of anyone, he was well recommended (why I ask you?) and he didnt even care he screwed up with me. SO anyway, thats why I let this get out of hand.
    I finally gave in and found the ONLY woman Urologist who happens to be a cheif urologist at a University Hospital which is an excellent hospital here in Northen NJ and I saw her yesterday. She examined me...I was in AGONY..she feels this is definately IC but wants to rule everything out first including more kidney stones since I have a history of them.
    Next week I go for the Urodynamic Study...IM PETRIFIED....I had this done by a male Doc 9 yrs ago and htought it was bad then, I cant imagine doing it now when a thimble full of urine puts me in excruciating pain...I have to go alone because my Hubby started ahving seizures again an is not allowed to drive and he will be at work. Im so scared, Im angry at all this and well, glad I found this palce where others know what Im going thru. In two weeks i have to ahve cystoscope...which that too hurts like hell. You NEVER forget pain like these tests cause. I have been thru so much now this...I also have to have a CAT scan with contrast to see if and how many stones I may have. God willing I hope thats not an issue.
    Anyway, wanted to introduce myself. My name is Diane. Married four kids (2 daughers, 1 stepdaughter 1 stepson all 4 all the time full time) My husband is a wonderful and caring man who ahs been so compassionate with me during all this (and a patient soul poor thing...our intimate life is really taking a beating and it really bothers me ALOT). I also have fibromyalgia which the Urologist I saw yesterday told me that IC is VERY COMMON to have if you have if Fibro doesnt wreak enough havvock in my life now this. Anyway, thanks for listening.

    SInce Im so new to all this and never took it seriously when I was first diagnosed 9 yrs ago because it was hardly this bad, I was wondering, WHAT ARE MY TREATMENT OPTIONS? IS THERE ANYWAY OF BEING TREATED WITHOUT MEDS BECAUSE Ii REACT BADLY TO ALL MEDICATIONS? HOW LONG COULD IT TAKE BEFORE I GET THIS UNDER CONTROL? DID I WAIT TOO LONG IS THAT WHY ITS SO BAD? I have ALOT of questions...I really am upset over this.


  • #2
    Awww Diane, I'm so sorry that you are going through so much. All the test do hurt but in the long run they are worth it. I dreaded getting tested but I was so sure I had IC. We are all here to answer any questions you might have. Getting Dxd was the best thing that ever happened to me. I was so sick of being miss dxd all the time and having antibiotics thrown at me and all the money I wasted. It's a shame that they cant find it out faster. I will pray for you! I hope your visits go and remember were always here to support you!


    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06