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  • Possible answer?

    Hi all,

    My name is Jamie and I am starting to wonder if I have IC. The quick version of my story is: Started with symptoms of endometriosis in 1994 (at the age of 15). 2004 had my first lap, got cleaned out, felt better. Over the years I repeated this whole process 3 more times--> lap, got cleaned out, felt better (though never 100% pain free). Fast forward to Tuesday. I had yet another lap, but when I woke up was blown away to hear there really was very little endo or adhesions (esp for me) so that indicated the Mirena seemed to be working to control it (good news...but then why do I still hurt?) The I remembered years ago my OB/GYN had mentioned IC as a possibility, but it never went any further.

    My symptoms are pelvic pain (all the time but worse with straining or intercourse), very bad low back pain (kidney areas) esp with ANY exercise, extreme fatigue, and sometimes difficulty sleeping due to the pain. My bladder has been extremely irritated since the surgery, which still could be due to the cathetar used during surgery (have to pee constantly, but can't always go). Looking back now I can see I have had several bladder symptoms I have blown off...but they are not constant. Several weeks ago I had a few weeks where every night I was up at least twice to pee, but then it stopped. I have had several days over the last year or so where I thought I may have been starting with a UTI, but the symptoms usually disappeared before I could even get into the doc and get a culture. When I have gotten the culture its always negative, except for white blood cells. I have also had stress incontinence issues since I was a young teenager, which of course got worse after I had my baby girl 5 years ago.

    I see my OB/GYN for my post-op in mid October. Any ideas are greatly appreciated. I had this surgery to try and help with the pain and I am right back where I started, only with incisional pain now too!

    Thanks for reading,

    Jamie

  • #2
    Hi, Jamie ~ Welcome to the ICN. So sorry to hear all you've been through in your short lifetime. I don't have any experience with endo, or laps, but the symptoms you describe now, "My symptoms are pelvic pain (all the time but worse with straining or intercourse), very bad low back pain (kidney areas) esp with ANY exercise, extreme fatigue, and sometimes difficulty sleeping due to the pain. My bladder has been extremely irritated since the surgery, which still could be due to the cathetar used during surgery (have to pee constantly, but can't always go) " are so similar to what I've felt. I even had kidney ultrasounds because of that pain. My symptoms started immediately after a surgery I had back in 2007. Mine comes down to IC diagnosed during a surgery I had last year so I'm getting things under control with treatment for IC and PFD. The inability to pee is the most uncomfortable and unnerving feeling of all at this point.

    I do hope your doctor helps you through at this point or can direct you to a uro/gyn who could investigate the possiblity of IC.

    Take care and please keep us posted. Enjoy that little one!!!! They sure grow up too quickly.

    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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    • #3
      It's possible that what you have is IC --- I would bring up the subject at your follow up visit. In the meantime, you might want to give the IC diet a try. You'll find the latest food list at the link in my signature below.

      Donna
      Stay safe


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      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.

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      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

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      • #4
        Ginger,
        Thanks for your reply I don't know what the next step will be but I will find out later this month when I see the gyn for my post-op. I wouldn't be surprised if I end up with a kidney ultrasound b/c of how bad the back pain is (I had really thought it was due to my endo). I will let you know how it works out.
        Jamie
        PS- you are right they grow up too fast I can't believe she is already in school.

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        • #5
          Donna-
          Thanks! I will try the IC diet. I have been gluten free for almost 7 years due to celliac's disease so I will look into how I can merge the 2!

          Jamie

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