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New to ICN ? about PT

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  • New to ICN ? about PT

    Hello my name is Julie I am new to ICN,finding it very helpful.Suffered with out a diagnosis for most of my life was seeing a urologist in Lancaster PA for 8 yrs finally saw another for a 2nd opinion and he sent me to Dr Kristene Whitmore (who I love),She did reconstructive surgery,pelvic and bladder,my bladder had herniated thru abdominal wall mucsle& had attached to the wall,she did an awesome job that is when she confirmed the IC with the ulcers,I am now taking Elmiron,ibuprofen800mg,amrix15mg,hydrocodone5/500,prilosec20mg,valium supp ,estace cream ditropan5mg,cromolyn petrolatum and bladder instillations 1xwk,my question or concern is about the internal PT,Im supposed to start on fri for hightone pelvic floor muscle dysfunction,and I have no idea what to expect and Im getting very anxious and fear it will be too painful since sex is like 10 for pain.any info would be greatly appreciated Thanks Julie
    Last edited by JulieA; 09-27-2011, 01:55 PM. Reason: spelling

  • #2
    Hi, Julie....I can fully understand your anxiety about the PT. I felt the same way, but honestly, they handled things so "clinical" that it's no different than any treatment other than it's quite "private" indeed. It's my understanding from literature I've read from the ICA about PFD that the internal therapy should only be done as you can tolerate it and may need to begin with external first. That was how I was treated.

    The key to most treatments regarding our IC/PFD is relaxation. Prayers that your therapist is experienced with IC and you feel the results quickly.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found 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


    • #3
      Thanks for responding Ginger!

      Thanks Ginger, still thinking about it.I had a reaction to the estrace cream and now I have that pain on top of it all ,so maybe I will wait until that is clear.Thanks for the advice,Julie


      • #4
        Hi Julie, I'm also a patient at Dr. Whitmore's office. (I didn't have a great experience with her as you did, but I love the NP that I see there.) If you're going to do PT, I'd recommend seeing Raven Sims with Body Rebuilders. She is amazing! She's very nice and really knows what she's doing. I had PT for a long time somewhere else (for more than a year all told), and it didn't begin to fix my problems. I saw Raven for 4 months, and I'm so much better. Most days, I feel pretty normal, and I'm able to have sex with very little or no pain. I do the exercises at home every night, and they have really changed my life.

        Pelvic PT is a bit strange at first, but you get used to it. If you experience relief, you'll be convinced very quickly to keep it up!
        34 years old, bladder symptoms all my life
        diagnosed with PFD and VV October 2009; IC May 2010

        Current meds:
        Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
        Other past treatments:
        IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
        Tried and didn't work:
        Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture


        • #5
          Do not be scared! Think of it like an yoga class for your vagina. Go slow and let them know if you are in pain. Pelvic stretches worked great for me.