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  • #1

    Anyone suffering in Oregon?

    Hi, everyone,

    I'm 24 in Portland, OR and suffer from IC, vulvar vestibulitis, and endometriosis. My pain has really put an end to my social life, let alone dating. I would love to meet people around my age (or not) who are suffering, too. I have posted on the forum to meet people regionally on this site, but I thought I'd try here, too.

    Good luck to everyone!

    Claire
    Tags: None
  • #2
    I'm south of you in the country outside of Eugene. I know there are some ICers in the Portland area.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment

    • #3
      Hi Claire,

      I am also in the Portland area (Hillsboro).
      I am 45 with a husband and 3 kids and have IC probably for many years although I am newly (finally!) diagnosed. I'm finding this to be a very frustrating condition, but relieved to at least know what it is I am dealing with. 2 weeks ago if I was in a flare, I would have taken 2 advil, some cranberry extract pills and swallowed them down with OJ! Yikes, no wonder I just got worse.
      Anyway, I just wanted to say "hi".

      Comment

      • #4
        JanaMarie

        I'm not from Ore. but I just wanted to tell you that when I started with this flare I'm in (in October) I DID take cranberry pills and washed em down with cranberry juice. I can almost laugh about it now (almost)!! So glad I finally got diagnosed!!

        And welcome!!!
        Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
        Lexapro-20 mg
        Aciphex
        Ambien-as needed
        Percocet-7.5 up to 3 per day as needed
        Valium-10 mg x2 per day
        Phenergan-1 at night
        Prelief w/everything
        Now recovering from acute pancreatitis

        Currents treatments that help somewhat:
        Heating pad
        Hot baths
        Ice
        Being VERY still while lying down with legs elevated

        Comment

        • #5
          Hi Katie, and thanks for the welcome
          If I hadn't come across this forum 2 weeks ago, I would still be abusing my bladder today!
          Did you mean that you have been in a flare since since last October? How in the world are you still sane?

          Jana

          Comment

          • #6
            Jana, I had SUCH a hard time finding a uro to treat me that I only got diagnosed in Dec. And I finally found a uro to treat me but he's in a big teaching hospital so I've had 1 appt with him and won't start any treatments til after I have a lot more testing with him. Which I can't do until Feb. 10th. It's going to be a long process and there hasn't really been a day since the beginning of Oct that I haven't had pain. I have moments of "comfort" and I always notice them because they are rare. But I thank God for my pain management doctor. He didn't sign up for IC. I was seeing him for injections in a herniated disc in my neck. But he has helped me SO much. I don't know what I would've done without him.
            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
            Lexapro-20 mg
            Aciphex
            Ambien-as needed
            Percocet-7.5 up to 3 per day as needed
            Valium-10 mg x2 per day
            Phenergan-1 at night
            Prelief w/everything
            Now recovering from acute pancreatitis

            Currents treatments that help somewhat:
            Heating pad
            Hot baths
            Ice
            Being VERY still while lying down with legs elevated

            Comment

            • #7
              I'm not from Portland, I'm from Eastern Washington, I can't find any support on this side of the state either! Its so frusterating! I hope you all can meet and get together! Are you happy with your docs? We don't really have much choice where I'm at but I do like my current doc, He's a gyn
              symptoms when in a flare:

              I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
              *I have a fibroid on my uterus near my bladder.

              Medication
              100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
              Flexoril 10mg (doesn't work)
              Hydrocodone 5/325 PRN
              Cetalopram 40mg *severe anxiety over flare

              Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
              My urethra are very tight.

              currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

              I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



              find me on Facebook! Brandy Schildknecht Covington

              Comment

              • #8
                Hey,

                I just wanted to respond about if I like my docs...if you're talking about MDs, no, they've given up on me. Nothing they tried worked, and I've seen the urologists supposed to be best for IC in Portland. I'm currently working with a great naturopath, although, again, no results yet. I also love me PT. She can't help with the cause of my pain, but she helps with the muscle pain I get from holding my muscles as a result of pain. Just wanted to throw that out there in case others are getting frustrated with MDs.

                Comment

                • #9
                  I'm from Vancouver, Washington, not too far from you! Have you had any luck with the Naturopath since you last posted?
                  24 years old, life-long IC sufferer. Main symptom is pain and burning after urination and now that annoying "gotta go" feeling after urination as well!


                  Current Medicines: Elavil, Levsin, Pyridium.
                  Pain Management: Baking Soda Water, Physical Therapy, TENS unit, Ice Packs, Hot Baths, Relaxation.

                  Other treatments tried:Flexeril, Prosed DS, Tramadol, Lidocaine patch, Lidocaine gel, Rapaflo, Elmiron, Vicodin, Sanctura, MSM gel, Hydroxyzine, Marshmallow Root, Bladder Ease.

                  Other conditions: Depression/Anxiety, GERD, Headaches, Scoliosis/Back Pain, Recurrent Nausea, Low Blood Pressure, Chronic Low-grade Infection of Tonsils, Muscle Aches .

                  "Hold fast to dreams,
                  for if dreams die life is a broken winged bird that cannot fly.
                  Hold fast to dreams for when dreams go,
                  life is a barren field frozen with snow."

                  Comment

                  • #10
                    Not really anything to report on the naturopathic doc. But what did help was my physical therapist. We found out that the ligaments and muscles around my untethra are always tight. She actually calmed the
                    Muscles down and I'm hoping we can keep it that way. I really want to try Valium when I get really flared up but haven't had luck having a doc prescribe it. God luck!
                    symptoms when in a flare:

                    I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                    *I have a fibroid on my uterus near my bladder.

                    Medication
                    100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                    Flexoril 10mg (doesn't work)
                    Hydrocodone 5/325 PRN
                    Cetalopram 40mg *severe anxiety over flare

                    Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                    My urethra are very tight.

                    currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                    I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                    find me on Facebook! Brandy Schildknecht Covington

                    Comment

                    • #11
                      Hi, Bethany2v,

                      Do you know about the support group in Portland? We meet pretty far north, so it might not be far for you. I've had a little luck the the naturopath. I'm still seeing her and she is very knowledgeable and doesn't give up. We have found an occult infection that we have not been able to get rid of with antibiotics, so she's getting trained in ozone installations. Message me if you want to get together or want info on the support group.

                      Comment

                      • #12
                        Re: Anyone suffering in Oregon?

                        This is a long shot since this post was from a few years ago now, but I'm also looking for a support group/looking for people who would want to start one in the Portland Metro area. I'm 27 and newly diagnosed.
                        Tentatively diagnosed - awaiting cytoscopy

                        Currently taking:
                        Vegetable glucosamine HCl 1500mg w/ MSM 1000mg (Bluebonnet Vegetarian Glucosamine) *I swear by this!
                        Fiber powder (off-brand Benefiber) 2x per day
                        Prelief with most meals


                        Unsuccessfully tried:
                        Vesicare

                        Comment

                        • #13
                          Re: Anyone suffering in Oregon?

                          Originally posted by _Laura_W_ View Post
                          This is a long shot since this post was from a few years ago now, but I'm also looking for a support group/looking for people who would want to start one in the Portland Metro area. I'm 27 and newly diagnosed.
                          There's contact information at http://www.ic-network.com/ic-support...upport-groups/ --- and scroll down until you find Oregon.

                          Donna
                          Stay safe


                          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                          Have you checked the ICN Shop?
                          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                          Patient Help: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          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.                           [3MG]

                          Anyone who says something is foolproof hasn't met a determined fool

                          Comment

                          • #14
                            Re: Anyone suffering in Oregon?

                            Thank you for the reply! Unfortunately, the contact person listed for Portland no longer lives here; I called her a couple days ago and she directed me to this site.
                            Tentatively diagnosed - awaiting cytoscopy

                            Currently taking:
                            Vegetable glucosamine HCl 1500mg w/ MSM 1000mg (Bluebonnet Vegetarian Glucosamine) *I swear by this!
                            Fiber powder (off-brand Benefiber) 2x per day
                            Prelief with most meals


                            Unsuccessfully tried:
                            Vesicare

                            Comment

                            • #15
                              Re: Anyone suffering in Oregon?

                              Hi, Laura,

                              Yeah, the Portland support group ended a few years ago when the leader left. Some people I met there and I tried to keep one up but it fizzled out. Now the person I've stayed closest to is moving, but I know one other who wants to start meeting again. I would happily get together with you to talk and see if we can get something going again. I'm 30 now (I see I began this thread when I was 24). I'm doing so much better now. I'd love to help you navigate your treatment since I have a lot of local experience. Also just happy to let you know you're not alone. Message me if you want to meet up!

                              Comment

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