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I guess I have OAB!

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  • I guess I have OAB!

    Hi all- since my last post here I got myself a fantastic second opinion. I brought with me a typed page of notes explaining all my symptoms and every other doctor's appointment I've had in regard to this issue. He gave me a lot of time and answered all my questions.

    Good thing I was fully manifesting all behaviors at the office too- I peed 5 times in the hour and 20 minutes I was there! He did an ultrasound at one point right after I peed but I felt ready to make another run, and guess who had a bone dry bladder. So he said it sounds like OAB.

    He put me on the 4mg of Detrol LA (even gave me a 3 week sample!) and within 3 days I could tell my capacity was improving and all pain was gone. I've still had a few times where my urethra feels a tickly fullness, but nothing at all like the pain I had before.
    Now I'm just trying to cope with retraining my brain to go so long without peeing. I find that after an hour I get the feeling like I need to go, but if I just breath through it I can hold it as long as 4 hours!!!!:woohoo:

    I don't know that I'd ever done that in my whole life! I truly think that my poor little urethra just got beat up from me going every 20 minutes for so long. The detrol has already given it enough of a break that I'm no longer in real pain, which is awesome.

    I just wanted to post since I've got something working for me finally. I also haven't had tomato product, carbonation, coffee, booze, chocolate, citric acid, or fruit other than pears in 5 weeks now.

    I just wanted to share that I finally got a diagnosis, and I'm having some improvements. I know everything works differently for everyone, so hopefully this will keep working for me. Just wanted to share!
    I had major surgery for a genetic rectal prolapse in Aug.05 which I believe links directly to my new Dx of....PFD! March.08. I'm working with a great PT named Zelda- I think the world of her I have the same feelings for the team at the Kaiser Center for Pelvic Pain in SF- amazing people.

    I've had a cystoscopy, 2 cat scans, falied a potassium test and have had about 50 clean UA's.
    This is my hot water bottle- the fish. I love him!
    I'm also a big fan of my "Electric Fish," the TENS unit. Very helpful in a flare!

    **I'm getting Botox next week!**
    I take:
    Oxybutynin 10mg
    Elmiron 100mg 3x day
    Gabapentin 300mg 3x day
    Antihistamine, CystaQ, Bc, & Thyroid (125mcg) nightly

    I've also taken:
    Detrol LA
    Oxybutynin patch and lower dose pill
    Amitryptiline and Nortryptiline

  • #2
    I'm so glad you have a dx! I was on Detrol then Vesicare and the longest on Ditropan (2 months). Nothing helped and my urethra thinks I have to pee all the time! I'm so happy you don't have to deal with that and you have a med that works!

    I wanted to say that I know someone with OAB. Her frequency was so bad that she was going 40 times a day and was put through all the IC tests... and she had OAB. Took her MONTHS to see an improvement. One thing she told me that helped her was to avoid citrus and acidic foods, even OAB patients are sensitive to that I guess. If she has 2 slices of pizza she really feels it but one slice she can handle. Just thought I'd mention it to you! She is years out from her dx and still has food sensitivities! Best of luck to you with your new plan! Your doc. sounds fabulous!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]



    • #3
      Mom not yet diagnosed

      Hi all,
      I am new. My mom's dr. thinks she has IC and I am afraid she has bladder cancer instead. What is the difference? Did any of your dr.s test you for bladder cancer? I made her get a 2nd opinion because it all started back in November when she drove herself to the hospital with a kidney stone. Ever since November she has had on and off UTI's and pain and hematuria. However in my family my dad died from Urothelial cancer with the exact same symptoms. Dr.s kept on telling him he was having repeated UTI's with blood in the urine. 2 and 1/2 years went by and he was diagnosed with Metastatic cancer 4 months after my son's diagnosis with autism. I am so scared my mom has cancer instead of IC. Can any of you tell me some of the classic signs of IC? My mom is 71. Is it normal to get IC this late? Just yesterday she has been on microbid for 4 days and she had blood in her urine. With IC would the blood go away eventhough you are on Microbid? She also has or had really severe yeast infections and is being treated for that. She also had a lot of intestinal difficulties too, bloated intestines and diahrrea 6 times a dayprobably due to antibiotics. The dr.s seems to think that she has permeability between the intestines and the kidneys and that is what is creating the UTI's. I just wish I could figure this out and not be so upset and keep thinking it might be cancer. Another red flag for me is the fact that the Dr. (Urologist) says she is an enigma to him. Can anyone shed some light on my mom's situation? He did biopsy yesterday what appeared to be pus and postules in her baldder from what the cytoscope check. But he said that there weren't any pus or postules there before in the previous visits she has had. Can Kidney stones provoke IC? or vice versa?



      • #4
        HI Jane,
        So sorry to hear what you and you mom are going through. That must be awful!
        I have IC but don't know anything about bladder cancer. (I'm sure there's lots of info on Google about it and can compare symptoms etc...there) I hope that's not what your mom has.....maybe get even a 3rd dr. opinion...I don't think that would be a bad move after all this!
        Good luck to you and your mom........Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


        • #5
          Well, I am new to IC (doc still considering that dx) and I don't know much about bladder cancer. My urologist said that the gold standard to study the entire urological tract is a cystoscope (and biopsy if she needs it) and then a ultrasound of the kidneys/ureters (but CT is better). I had a CT scan and a scope and didn't show anything. The fact that she had pus, is why she is on the Macrobid. I don't know how others react to it, but I haven't had any GI trouble with it. If it were my mom, I'd take her to another doctor for another opinion, maybe even another scope and biopsy. Not all doctors are skilled with the scope and maybe someone else will be better. I hope she feels better soon, and I hope a dx will be made soon!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]