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  • Santa Rosa, CA?

    I just found out that this network is based out of Santa Rosa, CA which is where I live. There is only one dr listed as an IC specialist here and I'm seeing him -his name is Dr. McCarthy. Anyone else here live in Santa Rosa and see this dr?? He's a Uro-GYN. He's not sure now I have IC so I'm taking antihistamines and giving it a couple of weeks to see how I feel. I am still going in and out of flares so I'm not sure the antihistamines are working or not. My main symptom is pain in both my urethra and bladder which increases with pressure (sitting) and activity (especially bending at the waist).
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2
    Interesting! I'm in CA too, but in Santa Cruz. Do you like the DR.?? I'd love to see a specialist. I can't find anything to make my pain go away other the MS Contin and it wears off, then I'm in pain until I take another.

    Comment


    • #3
      Hi Charisse,
      I just started with the antihistamine thing again myself tonight.
      The prescibed dosage on my bottle of hydroxyzine(atarax) says one 25 mg every 6 hours.You may want to check with your doctor and see if your getting the correct dosage.Ive tried the allegra but it didnt do anything for me.Going back and forth with different medication.
      Regards,GoldSeals
      54 year old male
      Diagnosed with IC in 1994
      Had symptoms since 1992
      Three cystoscopies.One biopsy with hydrodistention.
      This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
      Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
      Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

      Comment


      • #4
        Hey Charisse!
        I have heard good things about your dr. I would see him but they don;t take my insurance. I am not too far from you just down 101 in petaluma.
        I see a uro in SF. I am happy to have found her it is just a long trip. I am going in for a hydro distention on the 25th. Hang in there!
        mom to 3 wonderful kids


        IC symptoms 7/03,
        hysterectomy 11/04,
        prolapse cervix 7/07
        diagnosed: IC 2007
        IBS 2008

        Comment


        • #5
          Well I'm glad to hear someone has heard something about my dr! I don't personally know anyone else in my area with IC. He is very nice and says he promises to get to the bottom of my problem but for now I just have to be patient and see if things improve on the Atarax. So far I'm having a really hard time with delayed fatigue the day after I take it so it's been hard. There is no way I could take more than 25 mg right now and if I took it during the day I'd be completely knocked out. What's weird is I usually have a very high tolerance to medications that make me sleep. Charmed will this be your first hydrodistention? Are you scared? Abliske what other treatments have you tried? I tried the Heparin instills and I'm not sure if it was the act of being catherized or the solution but I always ended up in more pain for 3 days to a week afterwards. So now Dr. McCarthy is not even sure I have IC because he said I should have gotten relief from the Heparin if it's IC.
          The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
          First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
          Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
          Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
          Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
          BABY GIRL 10/28/08 *** BABY BOY 7/8/11

          Comment


          • #6
            hey charisse,
            I think I am very nervous about what to expect and how i will feel afterwards. I think though that i have more of an idea from reading posts on it. I think I am more worried right now about that drive back from the city with rush hour traffic and how I will feel right afterwards.

            I think that you have found a great web site and you will find a lot of info about IC here. It took me almost 4 1/2 years to get the diagnosis. I was able to find out more of treatments and of course diet to help me. My uro wants me to take a active role in my IC care, if I want to try something or have read about traetments we then discuss whether it is an option.
            Have you had a cystocopy or any other tests? Have you called Jill at the IC network office? We are very lucky to have the office right here. If you haven't yet I would reccommend talking to her, Jill has a lot of info to share with you. I would also advise ordering the book by DR moldwin, that book was very helpful to me.
            Good Luck!
            mom to 3 wonderful kids


            IC symptoms 7/03,
            hysterectomy 11/04,
            prolapse cervix 7/07
            diagnosed: IC 2007
            IBS 2008

            Comment


            • #7
              Your not driving yourself back from the City are you? I would be nervous about the car time too but hopefully you won't be in too much pain. I assume you are going under anesthesia right? Is the hydrodistention being done to diagnose you or to see if you can get pain relief? I haven't talked to Jill yet. I only recently found out that this network is based in SR. I had an in-office cystoscopy done in '02 and it was negative. This is one of the reasons I'm hesitant to do another cystoscopy because I'm not sure they'll see anything and it will just flare things up again for me. However if they do see something (my dr mentioned possible pockets of infection that he can drain) then it would definitely be worth it I guess). Please keep us updated and I will keep you in my thoughts on the 25th. I will have to look into some more books. I have one book right now but so far I haven't gotten much more info from it then what I can find here on this website. Is Dr. Moldwin's book more informative?
              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

              Comment


              • #8
                My husband is taking me to the city. We are doing the hydro to see if I get any relief from it. I was also hoping to get pictures of the bladder but UCSF doesn't take pictures. So i guess i am also just wondering how the bladder looks with the distention. I have had 2 cystoscopies. 1st was with my 1st uro he said that it looked like a normal bladder I guess that was around march/april of 05. I just had another in beginning of this year maybe last year (can't remember!!!) had inflamation.
                Do you get a lot of UTI's? did Mc carthy do your 1st cystocopy? I really learned alot from moldwins book.
                sorry if I am rambling it was a long day! I was good today with the pain but right now I am dealing with some pressure which is quite painful at the moment. better go. get ready for work in the morning! yuck!
                mom to 3 wonderful kids


                IC symptoms 7/03,
                hysterectomy 11/04,
                prolapse cervix 7/07
                diagnosed: IC 2007
                IBS 2008

                Comment


                • #9
                  I think I'd be curious to see pics too but I guess the best part would be getting relief. I'm glad you are not driving yourself. I got worried there for a minute! McCarthy did not do my first cystoscopy -it was done by a jerk of a urologist who I sought a second opinion from in April and he basically told me he thinks IC is way overdiagnosed and said some other really unbelievable things to me. If you want to know his name then email me privately. I would hate for anyone in the Santa Rosa area to see this man. I am so glad I found someone compassionate now. I will have to check out Moldwin's book. I found with the last book I got which was "The Guide to Interstitial Cystitis" that I really didn't learn anything new. I don't get a lot of UTIs. Do you? I had one in November last year that was caught during a urinalysis for something else so basically I didn't have any symptoms and had no idea I even had a UTI. So that scares me now. I was reluctant to take any antibiotics because I didn't feel bad but the nurse said my culture came back looking pretty bad. I decided to take cranberry capsules and drink lots of water and the next day I was in complete agony in my lower back and feeling really nauseated but still no bladder pain. I recovered within a day of taking the antibiotics. I'm sorry you're feeling bad today. I almost always feel better on the weekends when I can move around more. During the week I sit in a chair in front of my computer at work and I seem to flare more.
                  The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                  First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                  Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                  Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                  Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                  BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                  Comment

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