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  • This is so frustrating.

    On top of my Mom's Cancer, My Sister's Wedding, and doing what needs to be done to get myself some pain relief.....

    I've been having a huge flare of fibro and myofacsial pain in my neck and shoulders which is making the pelvic floor therapy harder to focus on. Actually focusing on clenching is making the urgency worse.

    I am so tired. I have to do 3 months of pelvic floor therapy before they do the pudendal nerve decompression surgery.

    The PT is having me do Kegal Exercises. They are making the urgency and frequency 10,000 times worse. I was having some pretty good days. This is making it worse.

    I really want to do this appropriately and to try everything to get better. I was dragging my feet on this for this exact reason.

    This is so frustrating and I am tired.



    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 These are old and my ICN Patient story is very old and outdated.

  • #2
    Thinking of you...

    and I will be praying for you. Pain, pain, go away....don't come back another day!!!!!!


    Hugs,

    Danita
    Dani


    -Bladder surgery to correct reflux-'68
    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
    -DX'd with IBS in 2000
    -Rhabdomyolysis in 2001 (has not returned)
    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
    -DX'd with TMJ in 2000-wear splint
    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
    -DX'd with Epilepsy -2000
    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
    -DX'd with Fibromyalgia (2006)

    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

    Comment


    • #3
      I'm so sorry Kara. You are going through so much. Although I can't really fully understand the extent of the pain you are in, I too have to go through PT before the doctor will be able to fix me. I think it is part liability and part so ins will cover the surgeries. I am thinking of you and I hope you feel better soon.

      Erika
      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control

      Comment


      • #4
        I totally hear you. My PT wanted me to do kegels also. I did them 3 days & spent those nights awake with miserable frequency. Fortunately, my PT respected my decision not to continue them & just keep going with the exercises that did help me. I don't know what to tell you, just wanted you to know you are not alone.
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          She has me doing other exercises that I am able to do. She has me doing some stretches, walking, and position changes. I can do all of that but the Kegals. I am unable to lie on my back and she has been very respectful of that. So I hope that she will respect this and find some other things do take accomplish the same goal.

          Has anyone else done PFT? Any exercises that were not too harsh on you?

          Thank 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.

          Comment


          • #6
            My physical terapist has me do stretches with a dialator. These make my symptoms even worse and is totally counter-productive. She calls them "clock stretches" I hate them.
            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              Hey Kara have been thinking about you. I sure do hope they will continue to work with you and understand when you can't do certain things. Can't wait until you are feeling better. You have alot on your plate now no wonder your body gets tired. Hope you can relax soon and I hope it will help you to get better.

              Sending many hugs, Trishann

              Comment


              • #8
                Hey Kara - PFT has been my worst nightmare. I KNEW I was clenching the pelvic area (with some frequency and urethral burning issues), so I asked to go to PT thinking I was being proactive in helping myself. After the first day of trigger point work, I experienced severe right hip and back pain that radiates down to my knee. It didn't help that I had fractured the right ankle and had to wear one of those walking boots prior to starting therapy. It has been a downhill spiral since then. I started massage, acupuncture and trigger point injections - thinking that might help - but only caused things to be worse. Any kind of stretching causes flares. So...right now I'm medicating myself and soaking, and that's about it. Even anti-stretching is painful. I'm not convinced that trigger point work and PT is for everyone. I hope you find the right combination - I think that's what we're all looking for.
                Stephanie
                p.s. I have a really stressful job (I work for myself) and stress plays such a major component. Perhaps as things settle down for you, so will the pelvic floor.

                Comment


                • #9
                  Thank you everyone! I apprectiate your feedback. I wish this wasn't so painful for us. At least we tried. Being proactive is a good thing in the long run.

                  Hugs!!!

                  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.

                  Comment


                  • #10
                    Hey Kara- just make sure to keep your PT aware of your symptoms. I'm sure you are anyway, but the worst thing is to not let them know what's going on. You're the only one that knows how you feel!

                    I hope the PT goes better for you soon. I'm nearing the end of my 12-week stint and I'm darn near normal almost all the time :woohoo: I never would have thought it would be possible 6 months ago, so just hang in there and you'll find some relief!
                    Diagnosed with IC: October 2006

                    Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

                    Treatment:
                    Lots of water
                    Fiber, when I can remember...
                    Elmiron (I'm down to 200mg per day)
                    Kegels (10 sets of 10 second holds per day)
                    Yoga and Pilates, each weekly
                    Exercise 3x weekly

                    Have tried:
                    PT for PFD and chronic back pain (VERY helpful)
                    IC diet (I'm not diet-sensitive while on Elmiron)

                    Comment


                    • #11
                      I'm sorry you're still having such a hard time. You certainly deserve a break!! I've been really hesitant about PFD because of what I've read on these boards. I've got the name of a lady who only does PFD, but I'm so afraid it will make me worse, and I can't deal with more pain right now. I hope that you start feeling better soon and that your therapist will work with you and give you exercises that don't exacerbate your pain!

                      Hugs, Sandy
                      *IC-- Summer 2004; PFD--October 2005
                      *Fibro--Fall 2000; CFS-- Fall 2000
                      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                      Total Abdominal Hysterectomy--adenomyosis--9\08

                      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                      Comment


                      • #12
                        Lots of patients do really well with PT and the at home exercises. My tone is so high the physical therapist is surprised I can sit at my desk all day! The exercises and trigger point release make me so much worse! My frequency and pain sky rockets after my stretches. I am only doing it for ins. purposes. I have only been doing it for a month. My pt says she concerned I may never be able to control the tone.

                        Erika
                        IC diagnosed officially via cysto/urodynamics 1/26/07

                        Grade II Endometriosis diagnosed via lap 12/11/07

                        "Fall down seven times, Stand up eight."

                        "Life is a tragedy for those who feel and a comedy for those who think."

                        Current Treatments:
                        Interstim Since 5/25/07!
                        Birth Control

                        Comment


                        • #13
                          Hi Kara, You've been in my thoughts and prayers as always! I was glad to see that you said you only (ONLY!...I KNOW!) three months of PT prior to surgery. At least you're moving forward, keep that in mind!

                          Hugs, Chris
                          Thank You all so much to everyone here for all your sharing, caring and support!
                          < My "Bear"
                          CurrentTreatments:
                          Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
                          IC Diet
                          Hydroxyzine 50 or 100mg at night (Is restarted)
                          Zoloft 100mg 4/8/07 (Is restarted)
                          Klonopin 1/2 mg 4 X Day (started 3/17/07)
                          Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

                          Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
                          Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


                          My Myspace page - http://www.myspace.com/42620225

                          Comment


                          • #14
                            I couldn't do the kegels either. I tried and tired but it felt like things were being squeesed down there. She has me doing me leg exercises instead. I squeeze a ball between my knees and then I stretch a band apart with my knees. In the beginning I could feel them both in the bladder but I don't anymore. Maybe that might help out?

                            Comment


                            • #15
                              I always have had problems with Kegels. My problem seems to be that things are too tight. if I try to do a Kegel I end up in lockdown. It feels really strange. I actually have to make an effort every night to focus on relaxing those muscles. Of course I am petrified that I will relax too much and pee the bed. This is such a fun condition! Make sure your PT knows the problems that you are having I think there are a million different things they can do if one thing doesn't work. I used to get the trigger point pressure, until one day I lost control of my left leg for a few hours later in the day, we immediately switched to something else. I hope you feel better soon.
                              I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                              DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                              I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                              Comment

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