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  • Berkeley Area?

    Hi, anyone in the Berkeley area who wants to start a support group?


  • #2
    I know you posted this over a year ago, but yes!!


    • #3

      Hi, Thanks for responding. unfortunately, i just moved on saturday! i had to move out of state cuz my mom isn't well and needed help. I am a devoted bay arean and feeling very homesick already. good luck. i'm here if you need to vent. do you have a good uro? i finally found one at kaiser. she gave me botox injections and they greatly reduced my pain and improved my overall quality of life. say hi to the bay and tilden park for me!


      • #4
        No I don't have a good uro and I have Kaiser too. I was diagnosed a year ago and my urologist is nice but doesn't really know much about IC. Who did you see at kaiser?? I had been under the impression that I am screwed with having kaiser insurance because no one specializes in IC! I do have a Pelvic pain PT that i really like, but I have to drive to kaiser SF to see her and its only once a month because she is so busy. Thanks for letting me rant a bit! So far I have not found anything that helps my IC besides following the diet . I will definitely say hello to tilden for you, I love hiking there when I am feeling well enough!


        • #5

          There's a great PT at richmond kaiser. her name is zelda and she helped me A LOT! I was going to see her once a week while i still had health insurance. I still do the exercises she showed me. and the good doc is a urogynecologist named rebecca margolis. i was the first ic patient that she injected botox into. i wish i could have talked her into injected my urethra cuz it is still painful. the pelvic pain specialist at kaiser oakland diagnosed me with vulvodynia. there doesn't seem to be any good treatment for that. but the botox really changed my life. I had to stop working due to the pain and discomfort of ic. after the botox i was able to get back to a more normal life.

          i went to the berkeley group of uros for years. dr. floyd gave me outdated treatments that never worked...infact, they made me worse. he started to doubt my symptoms and after awhile just gave up...that whole group is pretty awful. I researched the docs at kaiser and was glad when i had the opportunity to get kaiser and choose dr. margolis and then zelda.

          I hope you can get connected with these two folks. i wouldn't recommend the pain specialist i saw just because she wanted to load me down with some pretty awful meds. i tried them for a few days and felt so nauseous that i had to stop. margolis kinda pushes drugs too, but at least she gave me the botox and i'm thankful.

          all these docs love their drugs. the drugs make their jobs easy and then they don't have to research and learn more. that's when it's good to be an informed patient. i went to her with the idea of botox after i did my own research. i really respect her cuz she was open to whatever i wanted to do if i presented her with scientific documentation. dr. floyd and the berkeley group are not open-minded at all. i also always insist on having women if possible. i just don't think guys can relate to the pain at all.

          ok...i'm sorry i'm rambling on here...hope there's some info in all of this that can help you. btw, i remember well how it felt to hike and each step was painful. but there's nothing more healing than being out in nature. my partner and friends all are used to me having to pop a squat whereever-whenever. so try to get out even if it's just for an hour.

          take care
          if you go see any of these folks my real name is gina brown


          • #6
            Did you need a referral to see the urogynecologist? I found her on the kaiser website, she looks good. Does she see other patients with IC? Was she familiar with the treatments, besides botox?

            Thanks, Gina


            • #7
              I could come to Berkeley if someone started a support group and it was an early evening or weekend time
              (I'm too crazy-busy to start one myself, but would love it is someone was able to get it rolling!)

              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!


              • #8
                Re: Berkeley Area?

                I know this thread is old but I would LOVE to join a support group in the East Bay (or really anywhere in the Bay Area). If anyone is still interested, please let me know!

                First flare: June 2012
                Started pelvic floor PT: December 2012
                Started seeing urogyn: November 2013
                Started Elmiron/lidocaine instillations: December 2013
                Started DH Aloe Vera: March 2014
                Scheduled for hydrodistention: April 2014

                Current meds/supplements: biotin, tumeric, D-Mannose, Cysto-Renew/Cysto-Protek, magnesium, Vitamin D, Citrucel, Lexapro, Allegra, Aviane (contraceptive), Desert Harvest Aloe Vera, Azo (as needed), Prelief (as needed w/ food), Vicodin (as needed, as a last resort), marijuana/THC tincture (as needed)


                • #9
                  Re: Berkeley Area?

                  I go to school in Berkeley but am currently on a semester off, in Santa Rosa. Definitely interested in meeting others in the bay area!


                  • #10
                    Re: Berkeley Area?

                    I was diagnosed with IC last August. Currently seeing a doctor at Kaiser in Santa Clara. I am changing my health care provider next year and am searching a new doctor who can treat IC. I am currently taking Elmiron and it seems working with strict diet. I called Stanford Hospital today and found out the doctor retired this April. They said they receive a call like mine a lot recently.

                    Since I am Japanese, I went back to Japan last October and saw IC specialist in Japan. I did hydrodistention in Oct 2014

                    I'd like to join the support group!!! I was looking for a support group so we can exchange information.

                    If anybody seeing a IC doctor in SF/San Jose Area. Please let me know. I am searching really hard.

                    I live in Saratoga and work in San Jose.


                    • #11
                      Re: Berkeley Area?

                      I'm interested in starting a support group in the SF bay area. I live in San Leandro but can travel by BART. Anyone interested?