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  • Support groups on Oahu and Maui

    There used to be a support group on Maui but we lost contact with the group leader. I also remember talking with someone in Honolulu who was thinking of starting a group. Anyone know what's happening in the Aloha state these days?

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  • #2
    I volunteer!
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

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    Comment


    • #3
      Can I be first in line? I'll definitely volunteer.

      Aloha!
      Donna
      Stay safe


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      Comment


      • #4
        Aloha Jill,
        I live in Hawaii and had been in touch with Lisa about the support group. I have not been able to reach her in a long time.

        We only had one doctor in Oahu who was dabbling in IC, but she moved to the mainland a few years back. There have been several Dr.'s on the Big Island who had some knowledge of IC who also went back to the mainland. Because of the lack of support in our state, I travel to NY every summer to see Dr.Robert Moldwin.

        I am unaware of any other individuals on the Big Island or Oahu who suffer from IC like me.

        I would love to be in touch with others who understand the struggles that come with IC.

        Aloha,
        Cindy I

        Comment


        • #5
          I’m on Oahu and also suffering

          I think it would be great to have a support group here in Hawaii. I see a uro-gyn in Honolulu. I recently got diagnosed but had pain for over 3 years, Drs. just assuming it was a UTI. Hope we can get some group started here!

          Comment


          • #6
            I live on Oahu and suffering from IC .

            I live on Oahu, HI .I am 46 years old and a military wife. I see a Urologist at Trippler Hospital. I wish there would be a support group here on Oahu. I think we have a lot of people in Hawaii suffering from IC. The Urology told me they see one sometimes even two patients each week for IC. Aloha.

            Comment


            • #7
              Great!

              It would be great to start a group I see a Uro-gyn Dr. in Honolulu. I do live more in the Leeward area. I really have no idea to start a support group but if I can do anything to start it Lmk.

              Comment


              • #8
                Maui

                I'm with Donna and Julie! Especially as winter approaches, Maui, one of my favorite places, sounds really, really nice.

                I hope you can find some people to join a support group.

                Good luck,
                Laurie

                Comment


                • #9
                  i'm another person in the 808 that might be interested. (people that live in oahu - what urologist do you see??)
                  lucky to live in hawaii but having a hard time and have a lot of questions.


                  vesicare


                  detrol la
                  pyridium


                  ditropan
                  buspirone

                  ?(new medications)
                  chinese herbs: golden form with rehmannia

                  triggers: alcohol, coffee, soda, chocolate, citrus, sex, spicy food, soy, running/jumping, pms, birth control pills, stress, and lack of zzz.

                  Comment


                  • #10
                    I see at the Urology Dr.Kern or Dr. Musser or who ever is available at the large Tripler Army Medical Center on Oahu. I had a Bladder Hydrodistention done at Tripler with very good experience . And I go there for all my problems with IC. I just came back from a visit from the east coast and I did attend a IC support group in New Jersey. What a great experience it was.So much support and a lot of good advice from other IC patients. I met lots of great people with IC. I can not understand why we here in Hawaii or Oahu don't have a support group because obviously we have a lot of IC people on Oahu. Can not speak for the other Islands. But at Tripler Urology they told me they see about 1 or 2 IC patients each week and they do each month about 3 or 4 Bladder Hydrodistenions for IC. I do mention about the need of an IC support group with each visit at Tripler but I guess nobody cares. And since Tripler is a Military Hospital civilians may not have access to the Hospital. In the mainland lots of support groups are held at Hospitals after hour.

                    Comment


                    • #11
                      alohagirl, it's nice to see another person from the island on here. i know my uro sees ic patients, but it's interesting that tripler too sees that many ic patients each week. somehow i guess i feel better just knowing there are others like me not too far away. i'm gonna ask my uro about support groups next time i go in. i meant to last time, but i was in tears when i left.
                      lucky to live in hawaii but having a hard time and have a lot of questions.


                      vesicare


                      detrol la
                      pyridium


                      ditropan
                      buspirone

                      ?(new medications)
                      chinese herbs: golden form with rehmannia

                      triggers: alcohol, coffee, soda, chocolate, citrus, sex, spicy food, soy, running/jumping, pms, birth control pills, stress, and lack of zzz.

                      Comment


                      • #12
                        i wish more people from hawaii would post. i feel like there are so few of us here...
                        lucky to live in hawaii but having a hard time and have a lot of questions.


                        vesicare


                        detrol la
                        pyridium


                        ditropan
                        buspirone

                        ?(new medications)
                        chinese herbs: golden form with rehmannia

                        triggers: alcohol, coffee, soda, chocolate, citrus, sex, spicy food, soy, running/jumping, pms, birth control pills, stress, and lack of zzz.

                        Comment


                        • #13
                          Does anyone know a good urologist in Maui? I have ic and my symptoms are back after several years of none. Now I'm in Maui, recently moved here and need to get into a Dr asap.

                          Comment


                          • #14
                            Are there any good IC or pain management docs on Oahu?

                            Hi

                            I am just looking for some info. My husband has a possible job opportunity on Oahu but before we even seriously consider it I need to make sure there is adequate medical care available. We lived on Oahu from 92-95 but my dh was military and all of the care was through Tripler. Since then he left the military so I need civilian doctors. I was dx'd with IC in 2003 and have had a really difficult time managing it. Nothing seems to work and I am currently in pain management as well as seeing a urogyn. I would love to hear what your experience has been living in Oahu with IC. Are there doctors? PM docs? From what I've read so far there doesn't seem to be a big selection of docs for these issues, which makes me very nervous. I would not want to move there and then find that there are no doctors!

                            Any info you have or experiences you could share would be greatly appreciated!

                            Thanks
                            Becky [email protected]

                            Comment


                            • #15
                              Aloha
                              I am a military Air force wife and my husband is in the service. We live here on Oahu since 5 years with the military. I see urologists in Tripler . I can not tell you if there are good Doctors in the civillian world on Oahu, but I can tell you what really bothers me a lot is that they dont have no support groups on Oahu and what I read I guess not on any of the other Islands. A support group is for me personally very important because meeting others with the same problem I dont feel alone with IC. And in support groups I lern a lot ,like what treatments others receive and what is helpful for them. Here on Oahu I feel like I am the only one because there is no support group. Twice a year I visit the mainland and there I visit support groups on the east coast and CA, and they are great. They help me a lot. I really like living in Hawaii but to tell you the true's I am happy to go back to the mainland some day again mostly because my IC. We will some day move back to San Diego, CA and there I will have good doctors and plenty of support groups. I guess it depends on where you live , HI or the mainland. There are good urologist and bad onces. For me it is besides a good doctor very important to have a support group, and I dont have that here. And by now I gave up hope that there ever will be one on Oahu.

                              Comment

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