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  • #31
    Hello to you, my friend! How was your appointment this week? I couldn't wait to post how mine was yesterday; aside from the getting a bit lost in Denver b/c I missed the South Downing Exit and should've just listened to my iPhone and arriving 15 minutes late, it was WONDERFUL. I absolutely love Dr. Dunn. No poking, no prodding. One of the girls at the front desk threw away my urology records LOL by accident and marked my EKG as my urodynamics test, but we got that all straightened out. I just explained to Dr. Dunn what I had been going through and I did start crying a little bit (I finally felt like someone was HEARING me!!!) and she told me that we have SO many options. She doesn't believe in instillations and told me to stop them immediately...esp if my new mixture is hurting. So I am going to cancel my appt w/ my other uro...permanently. She upped my dose of Elmiron to 400mg/day but I take it twice, once in the morn and once before bed. She also put me on Lyrica 75mg @ bedtime for a week and then bump it up to 150mg. The last thing she put me on is an anti-histimine called Vistaril; 25mg @ before bed for that one as well.

    Let me tell you, I am SO excited and I have hope for the first time in the last 2 years. I cannot thank you enough for letting me know that this Dr. Dunn existed! She completely understood how most urologists treats us ICers and was just amazing.

    Let me know how your appt went! OH and I got a massage after my appointment, so my day was just amazing. Couldn't ask for a better day.

    I'm going to post a thread on Lyrica and see what people think of it. I read a lot about weigt gain. I only weigh 90 lbs...but I like it that way.

    Talk to you soon!
    Humankind cannot bear much reality.

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    • #32
      I am sooooo sooooo soooooo happy 4 you! I was thinking about you yesterday and wondering how it went! I have my cousin here, so its been nuts! I am sooo glad you have hope and I'm so glad Dr. D was great to you. Wow, so some med changes? Let me know how it goes. How tall are you? 90 pounds! You are tiny! I can definitely gain weight so I watch it too. I'm 5'7" about 119.

      My appointment was ok. I was a little disappointed. I realized that i should expect a rushed visit. 1) she was behind and 2) it was a 15 minute appt. I was disappointed b/c I expected her to go over my test results. She really didn't. Just asked how the new meds were going. I told her I was tapering myself off zoloft myself and couldn't do all the drugs she gave me! She just said "oh, good for you." I had a list of questions, and I kept asking another one and another one and another one and She kept saying "Ok?" like hurry up. I was a little sad. But I know all my meds are good. I take 2 Elmiron morning 2 at night. Its a little hard with having an empty stomach. I eat all the time! Anyway, she was ok, just told me to come back in 3 months. I'm not sure what I think. I had a few more questions (about Lidocane jelly for sex) etc. etc. didn't get ot ask her about Vulvodynia and urethral symptoms. I was just kinda bummed when I left. But I think its just gonna be taking some time to get everything regulated. I also said my breast was stlil leaking greenish fluid (she put me on meds for breast infection, she didn't act concerned.)

      Anyway, I am not giving up on her for sure. She believes me. She told me I wasn't crazy and is on meds for me. Turns out the other antidepress. she gave me was elavil. I thought it was all tofranil. I am putting my treatment plan together myself. Taper off zoloft, take elmiron 2 weeks, then start elavil. Get on IC diet, etc. etc. I told her I was journaling. I thought she might have more advice for behavioral stuff.

      Anyway, I'm sooo glad you're ok. we'll talk soon. Keep me posted!

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      • #33
        I see Dr. Dunn too

        Hi to both of you! I was so surprised to hear about someone seeing Dr. Dunn. How did you first hear about her? I'm actually going to her as the surgeon who is going to do a hysterectomy and some pelvic floor repair from long-term prolapse problems probably due to childrbirth years ago. I have my surgery scheduled for Sept. 29th.
        The fact is that I have IC so we're not sure if this is what is aggravating the IC, causing it, or if fixing this will really help my IC. I do know, though, that in the meantime it will be very painful and it's taken me years to get to this point and to find a surgeon. I've had 5 opinions and I actually found her myself from the American Urogynecology Assn...but I'd been nervous because my regular doctors weren't familiar with her. But I loved her and was only waiting to find out about her references. I've since talked to the nurse who used to work for her at Denver Health and Hospitals and said she was excellent.
        If both of you are really new to IC, though, you may find it disappointing not to get a lot of real direction from her. I've found that there's not a doctor in Denver who deals really effectively with IC and really knows quite what to do. I've used a pretty ecclectic approach taking a little bit from here and a little from there and the main thing I do is Vicodin as needed prescribed by the wonderful pain doctor in Denver who deals with IC pain, Dr. Daniel Brookoff. I didn't find any of the other medicines (vistaril, elavil, elmiron, lyrica, cymbalta, valium) helpful to me and you have to take them continuously. Have either of you seen or heard of Nel Gerig or Kristinell Keil. They're the ones who many IC'ers go to here and some have good luck and others none.
        Got to go to bed. It's 3 in the morning. Some of us on this network have talked about a support group in Denver and haven't managed to put one together yet. Any interest? It's hard to get everyone pulled together, but I could do it at my house. I live in a very central location. Keep me posted on how it goes with Dr. Dunn. Nancy

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        • #34
          Thanks for your post! I would be very interested in a support group, however, I live in the Springs. Commuting to Denver is difficult for me with gas prices. It already costs me and arm and leg to come up with Dr. Dunn visits! 4 times in 2 weeks! Yikes! Anyway, I'd love to meet once and then just do support online sometimes. I always have a ton of questions and you two have already been thru a lot more than me!

          I am hopeful with Dr. Dunn even though her visit last time was a little disappointing. I just started Elavil and Elmiron, so I can't worry too much about it not working yet. I have to give it some time. That said, I only have time to cling to hope. That's all I can do.

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          • #35
            I really liked Dr. Dunn, however I also was a bit disappointed in the amount of time she spent talking to me about what was going on. She did prescribe Lyrica and hydroxyzine, which I didn't take until Saturday night and I slept ALLLLLL day yesterday. I as a bit upset because I wasted my Sunday. So I called and had her call me (I kinda felt like I was interrupting her dinner or something) and she told me just to take the hydroxyzine and add the Lyrica this weekend and just let my body get used to it since it seems I'm very sensitive to medication.

            Anyway, she didn't rush me out or anything and she was very encouraging but I agree with you that I was a little bit disappointed (although happier w/ her tne I was w/ my previous uro). I'm going to try to get on the waiting list for Dr. Brookhoff actually...maybe you should look into that as well.

            I'm totally interested in a support group, I'm in Boulder. If we can work something out just let me know. My personal email is [email protected]. If you'd all like to email me and we can exchange phone numbers, etc. that would work for me. You know, we could always do a 3-way telephone support group as well...just a thought.

            Hope you both have a wonderful day!
            Humankind cannot bear much reality.

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            • #36
              That sucks! What are those two for? That is a waste for sure. I'm like you, hypersensitive to some drugs. I told her that and she agreed and said that she believes me. Like how I can get spazzed out from low does Elavil and the vicodin and ativan combo for the cysto didn't phase me! Weird!

              we should definitely do a support group. I'm willing to drive up once every month or two for sure. We could always meet in Castle rock at Starbucks.

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              • #37
                Lyrica is prescribed generally for fibromyalgia and anti-seizure, but I guess it's supposed to help w/ nerve pain. (When I had my cysto they gave me NOTHING, by the way. ) ANYWAYS, the hydroxyzine (Vistaril) is an antihistamine....I guess they think that IC is related to histamines in some way. So that's my new plan for now. Oh and she upped my Elmiron to 400mg, 200 in the morning and 200 at night instead of trying to take it in the middle of the day.

                I can do Castle Rock or anywhere else really, we should definitely try to coordinate something! And I'm not just saying that...you know how sometimes people are like "oh we should totally get together" and you all know it's never going to happen...well I think in this case we really do need to get together. I need to be around some people that understand what I'm going through, so I will drive to wherever I need to to make it happen. Lets get this ball rolling!!
                Humankind cannot bear much reality.

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                • #38
                  I get it. I have bad allergies so maybe I need an antihistamine too?

                  So, it takes me about 1:15 to get to Dr. Dunn's. What if we met in S. Denver, at Park Meadows mall or something? that way it is a somewhat of an equal drive for everyone. Or, we could alternate Denver with the Springs? I wonder if there are people down here with this and they are not online yet. I'll post something....

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                  • #39
                    Sounds good. I'm definitely willing to drive to the Springs as well. I actually want to go to Cave of the Winds, so that would be a good excuse to actually get my butt down there! When is your next appt? Mine is Aug 22 @ 2:45. I wonder if we could coordinate appts on the same day...

                    I would def ask about the antihistamine.

                    Let me know what you post so I can check it out.
                    Humankind cannot bear much reality.

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                    • #40
                      Just posted under Rocky Mtn. States. sounds like our new friend knows some folks. I want to go to cave of the winds too! I have wanted to for years and have been when I was little! We could make it an outing!

                      My next appt. is in October. she wants me to return in 3 months. My endocrinologist is in the same building so I'm gonna ask him what he thinks of all this. he is GREAT and I have an appt. next week!

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                      • #41
                        Awesome! Well looks like we won't be able to meet in Denver anytime soon then. Should we plan a Cave of the Winds outing? I want to go SOON, so let me know when you're free! Do you have a person email addy and we can exchange info?
                        Humankind cannot bear much reality.

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                        • #42
                          Oh, I could always meet you down in Denver next week then. What day/time is your appt? I'm free all week and can usually get off work early if I have to. We could do lunch or coffee (I drink hot chocolate...) if you'd like.
                          Humankind cannot bear much reality.

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                          • #43
                            [email protected]



                            I could maybe meet you around my endo. appt. for hot chocolate! Let me find out when it is and let you know!

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                            • #44
                              BUMMER! My insurance does not cover Dr. Brookhoff. I hear nothing but good things about him! Do you guys know what an office visit costs out of pocket?

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