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I'm new, would love your input!

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  • I'm new, would love your input!

    Hi Everyone!
    I'm new, though I don't have a diagnosis yet. Not sure what my problem is really. I've been reading through the posts, IC guides etc....and have gotten a ton of information. I'd like to post my story to see what you all might think. I know you're all not doctors, but I do appreciate all the knowledge you collectively have!!

    Started on Nov 13th - with a bladder infection. It was Staph Aureaus and took approx. 1 1/2 months to clear up and 3 different antibiotics. The pain was immense......worse then natural childbirth. After it cleared, my bladder was normal but I was having residual pelvic pain. I have had a c-scan on my kidney, bladder and pelvis. I've had blood work and 2 transvaginal ultrasounds. I have simple cysts on both of my ovaries and several fibroids in my uterus. My gynocologist said he would be willing to do a hysterectomy on me since I have a family history of gynocological problems and fibroids. I am 32. My mother had a hysterectomy at 32 for the same reasons. My grandmother had a hysterectomy at 40 for these reasons too. My gyncologist said though that he wouldn't do anything without me seeing a urologist first to be checked for IC.

    Okay......I have an appt. with a urologist on March 1st. I've been reading about IC in case this is what I'm faced with. Here's the deal though.....I have pelvic pain - varies from day to day. I don't have burning in my bladder or frequent urination. I sleep through the night. I don't pee anymore then I ever did. The pain is around my uterus/ovaries/pubic area - but being so close to the bladder I guess its hard to determine. I've read about the diet. Last night, I ate spaghetti, chocolate and 16oz of tea to see what would happen. This morning I woke up achy and I thought "oh my god!! This is it, I have IC!!" Went to the bathroom to find I am bleeding again - early for my period which is consistent with the fibroids causing problems. SO, I'm achy *probably* because I started my period. I have had 2 cups of coffee so far this morning and it hasn't made me pee.

    Can IC just be pain and not frequent urination??

    How long after you eat a trigger food do you have IC symptoms??

    Do you have pain in your bladder/pelvis or does your urethra hurt too? Does it burn when you pee like you have a UTI?

    I'm not sure what I am hoping for here. I don't want a lifelong bladder disease, nor do I want a hysterectomy at 32!! I am done having children though - Thank God.

    Thanks for reading my post. I look forward to your comments!


  • #2

    I cant say if you have IC or not. Because IC affects all of us in so many differant ways..Some might have pain after they eat something, where some people may not, Some might have frequent urination, where some wont.. I think you get what im saying..So I think your best bet is to go to a Uro and get there opinion.. If you are having pain then something is not right, so I would get checked out as soon as you can.. .

    Good luck and God bless you


    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      I'd have to agree. Symptoms can vary so widely it would be foolish for me to even try to guess whether or not there's a possibility of IC. I also agree that seeing a urologist is a good idea.

      Stay safe

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      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


      • #4
        Yep. Definitely get evaluated professionally.

        I thought for years that my pain was from endo and cysts and all. I had never heard of IC until I found this board after being on the Hyster Sisters bb for four years. It fit so well with all my symptoms I went after this diagnosis like a bulldog and sure enough, after a hydrocyst I was diagnosed with a severe case of IC and possible "spongey kidneys".

        So it's worth going in. It's such a relief to know what is wrong. It helps tremendously. The pain doesn't go away, but the stress from undiagnosed pain is far worse, which increases your pain.

        Take care and good luck!