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Frustrated, looking for answers...

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  • Frustrated, looking for answers...

    Hello to everyone. I am a 40 year old female. In September of this year, I started having urinary frequency and pressure. I would go to the bathroom, and feel immediately like I had to go again. No burning, no pain. Just pressure. In mid September, one night, the pressure really began to feel more like pain, so I went to the ER because I thought I might have a bladder stone (I have taken Topamax and Zonegran on and off for 7 years for migraines and they can cause stones).

    Catscan showed a 4mm kidney stone in my right kidney, but nothing around the bladder. I should also tell you that right before all my symptoms started, I had a week where my lower back was aching a lot, and I felt sick, nauseated and all around bad. My urologist thinks I may have passed a stone then, but I didn't have any real sharp pain, so I don't know. My urologist, who I saw about 2 weeks after it all started, said he thought it was a kidney stone that had irritated my bladder. He said I also might have "a touch of ic". He wanted me to monitor my diet and symptoms for a while, and let him know if I wanted to take the next step, which is a scope into the bladder (he says I'll be asleep for a short time while they do it, thank God).

    So, I have been monitoring and taking 5mg of Oxybutnin for the last 2 weeks. Some days, I have almost no pain at all. Other days, I'm very bothered. I'm trying to keep track of what I'm eating, to see if there's a link. I gave up coffee, which was terrible! I'm also a vodka or gin martini drinker and had to give those up too!

    Sometimes, my pain is just the lower right hand side of my bladder. Other times, at night, my urethra will just feel uncomfortable. I can't quite explain the feeling other than it feels better if I push on that area (sorry, I know it sounds weird, but it helps).

    Now onto yesterday...I had extreme, pulsating pain over my right kidney (where the 4mm stone is). It lasted about 15 minutes of very bad pain, then went away and it's the next day, and I haven't had anymore of that pain. Do you think the stone could have moved? And if so, why am I not feeling any pain? I am scared to think of that going in my bladder, that's already irritated.

    So, I guess I'm still in the stages of trying to get this all figured out. I don't know if I have ic, but it's definitely leaning that way. What seems to help me is sipping water all day and trying to hold it for hours. When I was going constantly, it seemed worse. Also, kegals make me feel better down there.

    Any thoughts?

    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  • #2
    I can't even make a guess about what's going on with you, but I do think it could be a good idea to give the IC diet a try --- you'll find a link to the latest food list in my signature below.

    Keeping a diary can be a huge help in reaching a diagnosis so I do think it's good that your doctor suggested it.

    Sending healing thoughts,
    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