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New UroGyn, not familiar with my Autoimmune disease

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  • New UroGyn, not familiar with my Autoimmune disease

    Went to new UroGynecologist due to Overactive bladder..
    After having a Cystoscopy I got UTI within 2 days of this.
    She suggested 3 months of weekly Pelvic floor therapy - She thinks this will help my OA. I did one year weekly of Pelvic therapy, and it never helped OA.
    Does Pelvic floor therapy help one stop going to bathroom?
    I can't do this anyway as I have autoimmune disease ME/CFS, and have to restrict myself to one dr/week, errands.
    I tried those patches Oxytrol - for 1st time - and it helped a lot, till my thigh skin got numb after one use.

    She gave me script for Oxybutinal - for OA. Made my urethra spasm worse, dried out my mouth, etc.
    Do UroGYNs know about IC?
    So now I am in more than normal pain in my urethra - taking Uribel or Urrrelle for spasms.
    Any suggestions? Thanks Klassdg

  • #2
    I'm not understanding having to restrict errands, etc., due to chronic fatigue syndrome --- is it a part of your treatment? If you have pelvic floor dysfunction, therapy can help with frequency. Are you following an IC diet? If not, I suggest giving it a try.

    And yes, most URO/GYN physicians are familiar with interstitial cystitis. I see a urologist for mine.

    Stay safe

    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


    • #3
      I have multiple diseases, and yes with ME, most of us are homebound. I am on another group Phoenix Rising - many of my friends just stay in bed, and can't go to a dr.

      We get PEM or post exertional mailaise, after doing a Dr appt, then errands. Then I have severe ME for the next week - not relevant, it is just that I can't do once a week, because I am quite ill. I think I got so much worse in last 2 years with a major new diagnosis.
      It is a shame that ME/CFS is so misunderstood,

      But I did find my old Neurologic Urologist, and made appt - so very happy. He will help me with my pain.
      I reserve once/week for my Neurologist, Endocrinologist, Cardiologist, Hematologist, and my too often dental appts, and recently major dental surgeries, so my ME is pretty severe.

      The Uro/GYN I went to was not like my old Neurologist/Urologist - who did all my instills, etc. So now I am happy I got back in touch with him, and he is very familiar with my autonomic nervous dysfunction,etc.