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My Mind is Spinning

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  • My Mind is Spinning

    This is the first time I'm posting at this site! I have to say the amount of knowledge and support is amazing! I'll give you the Cliff's Notes version of what's happened to me... and believe me, I trimmed it down a lot!

    Nov: started having some pelvic pain when running, so I had to stop for a week to rest. Then started up again, pain. I thought I'd run through the pain and then after a few days of running, every step I took, I felt like I had to urinate. As soon as I slowed down to a walk, it stopped. So I walked instead. They gave me something for a yeast infection (I had just finished antibiotics) and Urised (which didn't do anything)

    Dec: still walking, but started having trouble with frequency and urgency when not exercising. I just dealt with it because I knew I would have my annual gyno exam in January.

    Jan: by the time I got to my gyno, I was peeing 40 times a day. If I held my bladder I would get so sick, start heaving even. It was miserible. I never felt horrible pain when holding, just sickening feeling, like there was something toxic inside that I coudldn't expel. My exam seemed normal to him and he referred me to a urologist, who doesn't think there is anything serious with my bladder. He put me on anti-cholinergics (to stop spasms), which didn't help. I actually missed a month of school/work because of this.

    Feb: because my symptoms seemed worse with my periods, they did a transvaginal ultrasound, which hurt like a dickens on my left side (where I've been hurting for months). My gyno wondered if I might have Endometriosis or something aggrivating my bladder externally. I saw the urologist again and he doubled my meds, which didn't do anything.

    Mar: I saw my internist and she wonders about Endometriosis too and I was referred to another gyno (expert and one highly respected and adored in town). He did another ultrasound and felt that from a gyno standpoint I'm ok. He did see residual in my bladder, he did see spasms in my urethra/bladder neck. On a pelvic exam, he said, "here's your urethra" and touched it and I jumped in pain. He was surprised. Then he said, "here's your bladder" and that didn't hurt. I've been having residual issues with my bladder, but before the bladder meds I had none. So, my gyno wants me to keep my cystoscope appointment for 2 weeks from now. He also gave me Pyridium and an antibiotic. He feels that my urethra is severely inflammed, for an unknown reason. I have never had a UTI or blood in my urine, so this is why they held off on the scope until now. My new gyno said that the meds might help and he also suggested following the IC diet, to let my urinary tract to calm down. He doesn't think I have IC, but rather pain in my urethra.

    I don't think I can handle this anymore. I find that the more I do (say go to work or school or exercise) the worse I feel. They didn't say why it would be exacerbated with activity. I'm talking I can't walk from my car to a building without the horrible need to urinate. They even gave me a handicap parking pass due to the severity of this.

    They haven't ID'd my problem. The urologist will scope me and I'm terrified because my urethra hurt when feeling it from the vagina... how will I handle it with a cystoscope??? My urologist said he numbs the entire urethra for the scope and he gave me some Lortab to take 30 minutes before the procedure. I'm afraid he'll see IC. He wants to check for IC, Endometriosis, diverticula, polyps, and urethra stricture. If nothing seems wrong, he might start me on Elmiron (scary) or do the hydrodistension under general. They might look for Endometriosis too (due to the cyclical nature of my "flare ups")...

    It's so hard not knowing what is wrong. It's hard to live my life when I can't get out of the recliner. I sit around all day because that is all I can do. As soon as I stand up I have to pee and it doesn't go away.

    If you made it this far, thank you! I just don't know what to think, how to function, and how to adapt to the IC diet. 80% of my diet is on the "avoid" list and being mostly a vegetarian makes it even harder.

    Well, I really do appreciate any advice you may have! I don't know if this is IC, they haven't ruled it out yet. Does anyone have pain in their urethra, and not the bladder with IC? My gyno said the radiating pain in my pelvis, back and legs could be from the urethra pain. I don't think the new meds are working, but it's only been a few days. I'm supposed to be on them for 30 days then go back to the gyno...
    I'm sorry this got to be so long!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]


  • #2
    I think my most difficult time with IC was the time before I was diagnosed. It does get easier with time --- and most people with IC do find treatment options that work for them.

    The diet is really worth a try. Some ICers feel it helps more than any other single thing.

    One important thing to remember is that for every individual posting here because they are in pain, there are literally hundreds out there who have IC, but aren't posting because they feel good and don't need the support of the boards.

    Sending encouraging hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help:


    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool