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  • #16
    Talking about pain on certain sides has me thinking of PNE. I have this disorder on my brain. I just ran across this post. I know close to nothing about pelvic floor therapy. I am slowly learning.

    Well Wishes to you!

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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    • #17
      Originally posted by born2swim View Post
      Thanks for your reply!
      The urologist wanted to hold off on the cystoscope all this time since I had not bleeding or previous history of a UTI (which the second opinion gyno was shocked about). Oh well, at least it is getting done soon (and I'm terrified!)

      Thanks again!
      I was scared about the cystoscopy, but I had to have 2 and found they were virtually painless. Both Doctor's used lots of Lidocain to numb me up. To be honest, I had more issues with the Urodynamics causing my bladder to spasm painfully. But that was just me! I too have had to give up exercise and it bothers me alot. I wasn't a runner like you, but I was serious about getting fit and had been doing Pilates and/or kickboxing 5 days a week for 6 months. I can do very ilttle now due to all of my pain. Just walking around the grocery store leaves me in terrible pain! I have Pelvic floor dysfunction as well as IC. Have you looked into that? I am able to (after almost a year) figure out whether my pain is IC related or PFD related most of the time. The PFD pain in my side and back and legs and pelvis and vagina usually comes with physical activity. Even lifting laundry baskets can bring it on now. UHG! I need to find a physical therapist within driving distance to finally get this under control!
      I hope you get some relief and answers soon!
      Good luck!
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

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