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Anyone out there in Kansas?

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  • #16
    Re: Anyone out there in Kansas?

    This thread looks pretty dead but I was hoping someone would know of a job in down town KCMO for someone with a non-working body. I'm a seamstress right now and I'm tight enough I pulled my groin aria getting out of a car. Sitting for 8 hours a day is not recommended and I'm in too much pain to continue this

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    • #17
      Re: Anyone out there in Kansas?

      Check out
      http://www.foundationalconcepts.net/

      Comment


      • #18
        Re: Anyone out there in Kansas?

        I'm new to the Kansas area as well as IC. Is there anyone still in this thread that's in Kansas?
        Diagnosed with severe IC and Endometriosis in 2016
        Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
        Surgeries: Laparoscopy, Hydrodistention (2)
        Procedures: Regular bladder instillations
        Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

        Helpful Links:

        Patient Help: http://www.ic-network.com/patientlinks.html
        IC Diet: http://www.ic-network.com/patient-re...-introduction/

        Comment


        • #19
          Re: Anyone out there in Kansas?

          Originally posted by Katie L View Post
          I'm new to the Kansas area as well as IC. Is there anyone still in this thread that's in Kansas?
          I only check in occasionally. Let me know if you need any help by replying to the thread. Sherwood

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          • #20
            Re: Anyone out there in Kansas?

            I'm a service member newly relocated here. Feeling a bit isolated, as if I'm battling alone. And navigating the red tape to get care is wearing me thin
            Diagnosed with severe IC and Endometriosis in 2016
            Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
            Surgeries: Laparoscopy, Hydrodistention (2)
            Procedures: Regular bladder instillations
            Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

            Helpful Links:

            Patient Help: http://www.ic-network.com/patientlinks.html
            IC Diet: http://www.ic-network.com/patient-re...-introduction/

            Comment


            • #21
              Re: Anyone out there in Kansas?

              Originally posted by Katie L View Post
              I'm a service member newly relocated here. Feeling a bit isolated, as if I'm battling alone. And navigating the red tape to get care is wearing me thin
              Everyday to keep stress down I do stretching yoga exercises and meditation as much throughout the day as I can. BTW, the AUA guidelines recommend this to help relieve pelvic floor pain and dysfunction.

              Try https://www.insightla.org/audio/367/...bsr-45min-wolf

              And

              https://www.insightla.org/audio/368/...less-awareness

              Are you at a military base? Riley? Leavenworth?

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              • #22
                Re: Anyone out there in Kansas?

                Thank you for the resources. I haven't been officially diagnosed with pelvic floor dysfunction, but I'll try them to see if they help with my pelvic pain.

                Yes I'm here at Riley
                Diagnosed with severe IC and Endometriosis in 2016
                Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                Surgeries: Laparoscopy, Hydrodistention (2)
                Procedures: Regular bladder instillations
                Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                Helpful Links:

                Patient Help: http://www.ic-network.com/patientlinks.html
                IC Diet: http://www.ic-network.com/patient-re...-introduction/

                Comment


                • #23
                  Re: Anyone out there in Kansas?

                  Originally posted by Katie L View Post
                  Thank you for the resources. I haven't been officially diagnosed with pelvic floor dysfunction, but I'll try them to see if they help with my pelvic pain.

                  Yes I'm here at Riley
                  I live in LV Co. I know of local sources of help in KC but not in Riley. I will respond if I know of ways to help though. For some diet works. For others mindfulness/meditation or physical therapy/stretching, or all of the above as non-medicine ways to cope. Medicine seems to have complex and varying results for most. My personal observations though.

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                  • #24
                    Re: Anyone out there in Kansas?

                    I've been on the diet, along with medication for almost a year. It's hard to get any kind of treatment other than medication as a service member. But I'm interested in those options!
                    Diagnosed with severe IC and Endometriosis in 2016
                    Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                    Surgeries: Laparoscopy, Hydrodistention (2)
                    Procedures: Regular bladder instillations
                    Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                    Helpful Links:

                    Patient Help: http://www.ic-network.com/patientlinks.html
                    IC Diet: http://www.ic-network.com/patient-re...-introduction/

                    Comment


                    • #25
                      Re: Anyone out there in Kansas?

                      None of the meds I was on helped--Elmiron, Elavil, or hydroxacene. Another thing I have practiced is mindfulness training. Google mindfulness and explore the options. It has helped me calm my inner motor that doesn't shut down easy.

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                      • #26
                        Re: Anyone out there in Kansas?

                        May I ask how the meds did not help you? Were they just ineffective or did you suffer side-effects? I have only been on Elmiron a few months. Hydroxacene did nothing for me. I'm on Elavil and seems that all it does it make me want to sleep all day. My doctor wants me to give it a few more months before I stop taking it. I will definitely look into that. Yoga seems to really help me. And peppermint tea. I drink it like it's my job on days when I'm starting to feel 'flarey'
                        Diagnosed with severe IC and Endometriosis in 2016
                        Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                        Surgeries: Laparoscopy, Hydrodistention (2)
                        Procedures: Regular bladder instillations
                        Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                        Helpful Links:

                        Patient Help: http://www.ic-network.com/patientlinks.html
                        IC Diet: http://www.ic-network.com/patient-re...-introduction/

                        Comment


                        • #27
                          Re: Anyone out there in Kansas?

                          Mostly side effects of Elavil--felt tired and depressed. Elmiron and Hydroxacene did nothing for me as well.

                          I had much improvement with PT. I have been treated with ASTYM. See youtube video here: https://www.youtube.com/watch?v=OEhWyb_6n6Q Or do search with ASTYM on youtube.

                          Without going to PT I do self help at home. First, using my hands, laying on my back, skin roll the abdomen and as much as I can down the thighs. Pinch skin and kind of roll or kneed the muscles. Between the belly button and pubis I push and pull in all directions including into the abdomen. This usually makes me want to pee. I go then come back for more. After about 20 min the skin/muscles loosens. I sometimes do this with a relaxation/meditation tape. There many 20 min +/- meditations at the Tara Brach website: https://www.tarabrach.com/guided-meditations/ She has a pleasing sincere voice that I like.

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                          • #28
                            Re: Anyone out there in Kansas?

                            Thank you for all your resources!
                            Diagnosed with severe IC and Endometriosis in 2016
                            Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                            Surgeries: Laparoscopy, Hydrodistention (2)
                            Procedures: Regular bladder instillations
                            Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                            Helpful Links:

                            Patient Help: http://www.ic-network.com/patientlinks.html
                            IC Diet: http://www.ic-network.com/patient-re...-introduction/

                            Comment


                            • #29
                              Re: Anyone out there in Kansas?

                              You're welcome. I hope you are doing better. I have more therapies if you are interested. I leave you with one more.

                              On the floor lay on your back and snuggle your butt up to a couch or bed. Put a pillow under your butt (maybe one for your head) and spread your legs up over the edge of couch/bed. For about 10 min practice abdominal breathing, long slow breaths feeling your belly rise and fall. You will also feel your pelvic floor expand and contract as well. Be mindful of this feeling during this session and try to carry it on after you get up. Especially when you go to pee. Meditate on this feeling on the toilet and the pelvic floor will try to relax, sometimes reacting that it is usually tense, creating some hesitancy. Keep up the long slow breathing, then at some point the bladder relaxes and voiding becomes more natural.

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