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  • The Day of Diagnosis...

    Hey,

    I went to my uro-gyno appointment today. I saw the PA for the doctor and she was wonderful. She said that reading my chart, it sounded like Interstitial Cystitis (IC) to her, even before we spoke. She wanted to run some tests today (I wasn't expecting it, but happy to have tests done). She first did a urine culture and found red and white blood cells. I said, over a dozen urine cultures and yours showed it? The testing kit they use is sensitive to trace amounts of RBC and WBC. So, I had both and no bacteria (urethra culture was negative). She then used a cath. (so painful) and she filled my bladder. She said to tell her when I felt like I had to urinate, then when I would pull off the road and hide behind a tree, then when I thought I'd die. 40cc's I was having to pee really bad. 150cc's I was ready to pull off the road (at this point I was getting nautious and bawling from the urethra pain and the pelvic pressure). By the time she got me up to 350cc's I was hyperventilating and bawling. It was horrible, but she wanted to rule out pelvic floor problems and overactive bladder contractions, so we can taylor my treatment to my problems. It is obviously abnormal to have that urgency/pain because normal bladders sense the need to urinate around 150cc's, but can hold up to a liter (1000cc's), so she said. She was looking for contractions (to signify if I have an overactive bladder), but she said that my pelvic muscles are great and that my bladder is not overly contracting. So, she was going to have me come in for another test (potassium sensitivity test) and I would have to be cath'd again, but considering that is hell for me, she did the other test today too. With the saline, I felt like I had to urinate at 40cc. She said that if I did not have IC, I would be able to hold 40cc's again before needing to urinate. She put in the KCl solution and it burned so bad. I was on fire. She barely put in 5cc. She said that is was a very strong positive test for IC, even if you can't see it on a cystoscope because it is a microscopic disease for many patients. You don't have to have gaping open ulcers to have IC. You can have tiny specks that are ulcerated that cause symptoms. I told her I don't burn or anything like that, but she said that my little "hiccups", making me have the urge to urinate every moment of every day/night, is my bladder's reaction to the pain.

    So, I have prescriptions for Elmiron (into week 2 now), Elavil, Atarax, and Ultram. The ultram is just for the next few weeks. I have to also jounral everything I eat/drink on bad days to see if there is a "trigger"... but so far... I think I reacted to the Tylenol last weekend... but I'm not sure.

    I also have to do these bladder lavages (washes), where they use an infant cath. to put Elmiron and lidocane directly into the bladder. I'm sure some of you guys have had this. I was told that some people get a profound effect with that. I go 3 times next week then every week until the Elmiron builds up in my bloodstream (maybe 2-3 more months). She said the hot flashes and night sweats are not a common thing she hears (especially at my age), but she said it could be a number of things and to just give Elmiron some more time to see if I get used to it. She said that she could see how the stress on my body is causing it or maybe it is a bug going around. So, I'll give it more time and hopefully I'll start to improve some. Boy, this is a nasty disease, but at least I can start treating it. I already started the Elmiron and I have been trying to "train" my bladder to hold urine longer, but that clearly hasn't helped because my bladder couldn't hold anything comfortably!

    Well, I thought I'd let you know that I got a diagnosis. Not a good one, but things could obviously be worse. I wish they ID'd this months ago instead of trying overactive bladder meds (which this lady said wouldn't help because my bladder wasn't contracting like crazy... nice to know after months on Vesicare/Detrol/Ditropan). I just have to look forward and hope things improve soon, especially before my masters program starts in June!

    Any prayers or well wishes for getting improvement quickly would be appreciated!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  • #2
    Wow! It sounds like you had a rough day. I hate that you had to go thru all that. I also hate that it is IC. I wish that it was something with a quick fix. But, at least now you know what you are dealing with and can start treatments/meds and hopefully start feeling better soon.

    I hope that the meds work for you and that they work quickly.

    Hope you feel better soon!

    Hugs,
    Amy

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    • #3
      Getting the diagnosis can be so very bittersweet. I know I was happy to finally know what was causing my discomfort and sad that it was something like IC. But, I also knew it meant I was on the road to finding treatments that would help - and now you are, too! I will definitely say a prayer for quick improvement for you.
      Kim

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

      *****************************

      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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      • #4
        Sounds like you have a good doctor!
        past meds:
        elmiron 100mg 3 x a day
        cystoprotek 6 a day
        elavil 10 mg
        Femcon fe
        non-shellfish vegetarian glucosamine HCL
        750mg once a day

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        • #5
          Well, I've been having these issues for months and when I called last week they said, "the doctor takes a month to get an appointment, so we'll get you in to see the PA and she'll start the ball rolling and get you scheduled for tests". So, I got my tests, a diagnosis, and meds all in one day! What a relief! I get my meds tomorrow and hope they start to work quickly. I will also have the infusions starting Monday of next week! I need to feel better!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

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          • #6
            Wow. You've definitely had rough day...the K test can be brutal for those of us with small urethral openings...
            I was diagnosed last august, and I can honestly tell you, it takes time to figure out. Acceptance was the hardest part. Then, I became active about researching this mysterious condition- when you go to the doctor, remember: you are your own best advocate. Don't be afraid to ask questions.
            Each one of us is different; I was flaring pretty badly, but seem to now be responding to hydroxyzine (atarax) and neurontin. I also have occasional pelvic floor physical therapy which has helped my PFD and frequency a lot.
            Good luck, and know that this is a safe and supportive place for your IC needs.

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            • #7
              Welcome to the club. I know that I was happy when I got my diagnosis last week because then at least I knew I wasn't crazy and now I can try different things to try to get better. I hope that the new meds and the instills work for you! Good luck!
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

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              • #8
                I'm glad you were finally diagnosed. I hope your meds begin to help soon -- and the bladder instillations may well help you. Many people here have excellent results. I have never done instills containing Elmiron, but I do perform heparin/lidocaine/sodium bicarbonate instills at home, and they really are helpful!
                ****
                Jen

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.

                Comment


                • #9
                  Honey, we all wish you well! Thanks for the update on your diagnosis; I guess it's good and bad news at the same time. I know I was really happy to get my diagnosis, but that's because it had taken nine years, and a lot of dismissive doctors along the way, to get to that point. From diagnosis on, you have a plan and you have hope.

                  Your treatments sound reasonable to me. I haven't done elmiron instillations either, but I hear it's kind of the next big thing. My instills use heparin as the active ingredient, which is chemically pretty similar to elmiron. Then lidocaine and sodium bicarb. It's a very soothing solution. I do mine at home; my doctor allows this for some of his patients, but not all. It's a great help to me because it's 140 miles round trip to the doctor's office.

                  I hope your PA is not married to this 'one size fits all' program, especially the timing. You may need pain meds for longer, or for less time; you may want to keep doing instillations beyond the end date they've set for you. It all depends on how your body responds, and every single one of us is different. But you have a while yet, before you have to think about that. Just don't let them tell you when you're supposed to be better; if you aren't, you are the one who will know that.

                  I'm really sorry you had such a long, hard day, but at least you got a lot of things over with, and you're on your way. There is so much variation in this condition, among patients. Some people have a long road to travel; others get better very quickly. Here's hoping you fall into the 'quick' category!

                  I don't think you mentioned the IC diet, but if you're not doing that, you definitely should give it a try. Just click on the link for Patient Handbook, above, and you'll find the diet within there. It can make all the difference for some people.

                  Good luck to you, and keep us posted as you go!
                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                  Wishing you happiness and good health, and all the best out of life.

                  Peace, Carolyn
                  ___________________________________________________

                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                  On the Beach with IC

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                  • #10
                    Born2swim,
                    I remember how mixed up I felt when I finally got a diagnosis. It took 6 weeks from the first suggestion of IC for me to be scheduled for all of the test and the wait was SO bad. I went back and forth between being elated because I had a name for the horrible symptoms that were ruining my life and it wasn't "in my head" after all, to crying for long periods at a time because there was no cure or "quick fix". Please know that I am here for you too along with all of the amazing people who have already answerd you. If you see anything in my signature as far as drugs I am on you have questions about, or just need to talk, PM me any time! Good luck and I hope the new meds will bring you relief VERY soon!
                    Rachel
                    DX's:
                    IC; PFD; possible Fibromyalgia; IBS;

                    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                    I've Tried:
                    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                    Currently using:
                    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                    Comment


                    • #11
                      So glad you are finally dx and getting the right treatments. Hopefully, you are on the way to recovery. Good luck.

                      Comment


                      • #12
                        Born2Swim - I am keeping you in my thoughts and hoping that you will be feeling a better soon. Sending healing energy...linda
                        Sudden onset of UTI like symtoms on Dec 27, 2006.
                        Diagnosed with IC on March 12, 2007.
                        Current Meds: 50mg Elavil
                        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

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                        • #13
                          Berkshire Road,

                          You know, I feel so lucky that I was diagnosed quickly (compared to those of you that suffered for years). 6 months was a nightmare, I couldn't imagine doing it for years. My PA sounds wonderful. She said that she wants to do 3 instillations next week then weekly (if they help) until the Elmiron is up and working in my system. She said to expect 3 months. She also said that if I ever flare, I can come in for an emergency instillation. She also commented about patients that know when they'll flare (like having alcohol at a son or daughter's wedding), so they plan a rescue instillation after they will ingest the trigger. She said that after a few months on this treatment plan, we'll evaluate it and see what has to be changed. She gave examples of how widely her patients differ and how their treatments (and diet triggers differ). So, I'm very comfortable with her and very happy that I was referred to this office! I wish it was sooner, but better late than never!

                          I did do the IC diet, and saw no improvement. I added back everything except for tea/coffee/splenda/citrus fruits/juices. I had some Tylenol a week ago and that seemed to have a huge effect on my symptoms... but I'm not sure. I have to take it again sometime (when I know I can be home) to see how I fare. I was also thinking about trying tea or coffee (I only do decaf) the day before one of those instillations to see how that treats me. I'm trying to play detective here, but it doesn't seem like anything diet wise is to blame (at least not apparent yet).

                          I really appreciate all the support and advice you guys have given me thus far. This is so hard to accept an IC diagnosis (that I now have a chronic disease and have to take 4 new meds). I'm crushed, but I'm also grateful they found my problem and I can start a treatment plan to hopefully help it!
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                          [

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