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  • #1

    New doctor = I'm scared!!

    I have my appt with my new doctor tomorrow and I'm having a hard time going to sleep. I don't know if anyone remembers but the last time I saw a uro he told me that if I couldn't take the Elmiron and couldn't take the elavil, then my only option was to "Just suffer".
    I'm bringing my husband with me in the morning just so he can hear everything that's said too. But, I'm scared he's going to say the same thing. I know in my head that he won't. But I swear I can still hear those words come out of that other doc's mouth. "Just suffer". Unbelievable. And I can't believe that I'm still giving him this much power to keep me awake when I have to be up at 5:30 AM. Jerk.
    That's it. I'm done with him and I'm hopefully going to sleep.
    Good night everybody!! (Thanks for letting me unload)
    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
    Tags: None
  • #2
    Be sure to let us know how it goes.


    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

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    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.

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    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
      Hey Katie....

      i have a doc appt today as well, and even though i have been his patient for 2 years i am scared to death....my pain levels have recently skyrocketed, and i am scared to death to discuss this, for whatever reason....he has always been very nice and taken his time with me. Elavil didn't work for me.....i think it made me eat a lot and be very depressed when i am normally not a depressed person......for some reason for me, the anticipation of the appointment keeps me up at night too. So, the advice i have been given is go in and tell him how i feel....if i don't, i will walk right out that door in the same boat i was in when i got there. Here's to us both having great appointments today! Please let us know how it goes and i will do the same!


      Meredith
      Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
      Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
      Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
      IC Handbook Link: http://www.ic-network.com/handbook/

      Comment

      • #4
        Hi, Katie and Meredith ~ I'm so sorry you're having a difficult time with your relationships with your doctors. I agree that you need to be honest and maybe you'll cross that bridge to feeling comfortable discussing anything with them. You already have enough on your plates with the symptoms and to add not sleeping must be horrible.

        Just for some info....my doc also Prescribes Elmiron but I chose not to take it and when I started to have side effects from other meds he was as calm as could be and told me they have so many alternatives to try. Hopefully your docs will give you each the same reassurance.

        Like Donna said, let us know how things go.
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

        Comment

        • #5
          I'm a little late on this thread but I'm wondering how your appointments went today? Good I hope!

          Vicki
          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

          Comment

          • #6
            Update

            Hey girls...............Katie, hoping your appointment went wonderfully today...please update us when you can.

            My appointment couldn't have gone better. Come to find out i have a terrible bladder infection. My doctor couldn't have been more helpful. I am on Macrobid twice a day for a week.......I have been prescribed a very low dose of Xanax for my anxiety......he increased my pain medicine to get me through this terrible infection and flare and said if i was pleased with the dosage and felt okay that i could stay on it. Also....the best part of my visit was that i will now be able to mix my own bladder instillations at home.......my mixture will now be Lidocaine/Sodium Bicarb/Elmiron......the old mixture had Heparin instead of the Elmiron and was $$$$$$$ and greatly decreased the shelf life......and my pharmacist told me to come back this week and he'd teach me. I couldn't ask for a better doctor.....but for some reason, i always get so nervous before i go to see him.

            Thank you all for checking in on us....and Katie, i really hope your new doctor was good to you and the hubby today...goodness knows i saw plenty of them that just scratched their heads at me and ended with me leaving in tears. But if you need anything, please feel free to private message me, and i certainly hope that your visit went well...........i feel like a weight has been lifted off my shoulders and i can already tell a big difference right now versus how i felt earlier......what a rough day.........thanks again ladies for lookin out for us...............

            Katie, looking forward to hearing from you......we are here for support should you need it!


            Meredith
            Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
            Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
            Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
            IC Handbook Link: http://www.ic-network.com/handbook/

            Comment

            • #7
              Oh that's great Meredith! A good doctor can make all the difference in the world.

              Ooh, but an infection, huh? Ouch! That and an IC bladder never bodes well! Hopefully the macrobid will do it's magic quickly.

              I sure hope Katie's appointment turned out well today. It sounds like she's had enough discouraging experiences and is deserving of a break about now.

              Vicki
              "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

              Comment

              • #8
                thanks Vicki!!!! it is so nice to be able to talk to others who know exactly what we go through every day.....i have a wonderful support system around me, but unless they've walked in our shoes, its hard to truly understand what its like!

                ugh.........bladder infection..........i knew something wasn't right.....feverish, back killing me, peeing razor blades, the works.......but i am on the road to feeling better, i just know it.......

                yes, hoping Katie had a good appointment....there's nothing more frustrating than leaving a doctors office with no answers and upset......i remember when i woke up from laparoscopy b/c my OB thought my pelvic pain and problems were from endometriosis and when i woke up from surgery she said she found none and i was devastated...........but that chain of events led me to my current IC specialist.

                hope you ladies have a good nights rest.....saying a prayer for you all!!!

                Meredith
                Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
                Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
                Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
                IC Handbook Link: http://www.ic-network.com/handbook/

                Comment

                • #9
                  Why did your doctor say you can't take Elmiron or Elavil? Did you have side effects from them previously or something?

                  I highly doubt you would have that experience twice - a doctor saying you can't take either of those, if you did want to try them. It's not like they are addictive narcotics or something. Don't worry, I bet this doctor appointment will be much much different from that last one. I would bet on it.
                  Update! Feeling much better these days and no longer on any meds!

                  Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

                  Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

                  Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

                  [/COLOR][/SIZE][/FONT]

                  Comment

                  • #10
                    Ok...

                    First of all, Meredith, I'm sorry you have an infection but, hopefully it will clear up your pain very quickly to be on the right meds!! I don't really wish I had an infection but part of me kinda does, lol, then at least I'd have some answers. I hope the antibiotics kick in quick!!!
                    The new doctor was really good. And he did NOT tell me to go home and suffer, thank you Lord!! There were not a lot of answers yesterday. But I have tests set up that will hopefully help put us on the right track. Unfortunately, because it's a big hospital, I won't be able to start those tests until February 10th. So it's another month of waiting. But he is going to set me up with a pt who's supposed to be really good AND she also suffers from IC. So she gets it.
                    I do have to tell you guys a funny thing that happened though. (And I needed something funny because by the time we got there I'd already started and stopped crying 3 times). When I first went in, of course I had to do a pelvic exam with the PA. Then the doctor came in and HE had to do a pelvic exam. Well, I'm laying there in the stirrups, my husband is sitting there looking more uncomfortable than me and the doc calls the PA back in. He says to "feel in there and see if you feel anything unusual.". My husband and I are looking at each other like ?What's in there?! Then after she pokes around for a while he says she missing (some muscle or other) on the left side. So she goes back in and is like, Wow, yeah, you're right!! Then the doctor says to me "Would you mind if my Fellows came in and felt this because you have a "remarkable vagina" and they probably won't ever come across this in their practice?" Well, first of all, during all the poking I forgot that it is a teaching hospital, so I was kinda like Who are these fellas? Then, I guess because all the stress just hit me at once I started laughing with my feet in the stirrups and said bring in your fellas so they can feel my Remarkable Vagina!!! My husband started laughing and I don't know how the doctor felt about the appt after that point but it got considerably easier for us, lol!!!
                    BTW, he did tell me that he missing muscle isn't responsible for my pain. But it was good for a laugh.
                    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

                    • #11
                      Wow! what a story. I don't think many of us have one like that. So glad things went better for you. Sounds like your in the right place, lucky you. I'm still not possitive that my uro is all that knowledgeable about this but I am feeling better. Unless you have this complex, frustrating and painful diesease you just can't know. I try not to say to much to friends because they can't even imagine all that you go through. I sure am glad to know that there are others out there with the same feelings and similar experiences. As I mentioned before in other posts, I too hate to go to the doc. I didn't know that there were others out there with the same feelings. It's so important to have a doctor that you feel comfortable with. I will see an new one on the 25th and pary that she will be understanding and helpful. Again, so glad you wrote back and shared with us how it went. Hugs to all. Judy Gee

                      Comment

                      • #12
                        Judy

                        I hope your appt works out. The only time I started to cry when I was actually IN the doctors office was when he told me that he had a lot of other patients who had felt the same way I feel now. And they were feeling better. You're right, you can't explain this to anyone, like friends. They just have to experience it. And I don't wish THAT on my enemies, much less my friends!!
                        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

                        • #13
                          "remarkable vagina" OMG! That's too funny! Had this happened to me my hubby would never be able to let that one go.

                          I'm so glad things turned out better for you this time. I spent many years going form doctor to doctor only to have them stare at me like I'd grown three heads when I'd tell them about the symptoms I was experiencing. The helplessness became devastating after a while!

                          A teaching hospital might be a good place to look for help. Often times I felt like the docs I saw wanted a fast, simple solution, and if it were otherwise they quickly washed their hands of me. It seems like a teaching hospital may be more up for, -even like, the challenge of dealing with IC.

                          he told me that he had a lot of other patients who had felt the same way I feel now. And they were feeling better.
                          What a difference that can make!
                          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                          Comment

                          • #14
                            Vicki

                            LOL!! You are SO right about my husband!! Since we have caller ID, now when he calls, he wants me to say "Hello, this is Katie, home of the Remarkable Vagina"!! He's been so great to me since this all started that for NOW I'm humoring 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

                            • #15
                              So glad that each of you had great appts.

                              That's HILARIOUS about your "remarkable vagina"! Even funnier is that he said that they may never see another one like yours again!
                              Yeah, my DH wouldn't even let me live that one down either! (Heck, mine would probobly even get a trophy made up for me as a gag gift! For the rest of our lives he'd be kidding me about it and anytime we ever had sex again, it would be preceded by some sort of comment about "That remarkable vagina"!

                              Too funny! (As a side note, from now on, anytime I see a post by you, I am gonna have to stop and laugh when I think about this!
                              I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                              D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                              Meds: Estrogel (due to total Hyster)
                              The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)

                              (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                              John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

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