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  • Just diagnosed, started instills today

    Hi, I've posted a few times but haven't yet introduced myself so I thought today would be a good day to do so since I just had my first treatment and still have so many questions. I'm 43, live in Arizona, and still don't know what caused my IC.

    I never had a history of any pelvic pain, UTI's, or any surgery before being diagnosed with IC. Nothing. This hit me literally out of the blue. One night I was sitting at a baseball game, enjoying the weather and a few beers, not even thinking about the bathroom, and the next night I was miserable, peeing every 15 minutes. I had one bladder infection when I was about 18 and remembered that feeling of having to go often so I assumed that was what I had again. I went to see the doctor and she said there was blood in my urine and it definitely looked like I had an infection so she gave me some antibiotics and sent me on my way. They called after the culture came back to say that I definitely tested positive for e.coli but my symptoms weren't any better after a week on the ab's. She then switched me to cipro for another week and still no change except now the cultures all came up clear for infection.

    At that point I was referred to a urologist who did an ultrasound of my kidneys, told me "nothing's wrong," gave me some OAB meds and sent me on my way, telling me to return in 6 weeks. Not acceptable. I then did some research, found a fantastic urologist and made an appointment with her. In the meantime, I visited my gyno to have internal ultrasounds done, along with all the tests for BV, STD's, etc. All clear there, too. The new uro suspected that I might have a kidney stone stuck near the bladder that was causing irritation so I had a CT scan to check. There were two little calcifications that showed up and I was clinging to the idea that those could be removed and I could get on with my life. Uro ordered another CT, this time with contrast and without a doubt then everything came back clear. No stones, no obstructions, and no other abnormalities.

    I was diagnosed by exclusion and by my symptoms of pressure and extreme frequency. She said that it's unusual to have symptoms just pop up like this but that it does sometime happen. There is never any time that I feel like my bladder isn't bursting and it's been like this night and day for over 2 months now. OAB meds haven't helped and I'm on Amitryptiline to sleep but that hasn't helped with frequency yet either. I started taking Elmiron orally on Tuesday and today was the first of 6 Elmiron rescue instillations. I actually feel a little worse after that because I have burning where I didn't before but I guess that happens for a day or two afterwards.

    I've been sticking to the IC diet for 7 weeks and can't tell any difference at all. I've even tried eating tomato a couple of times here and there to see if anything happens and it doesn't. I'm staying off the coffee, sodas, juice, etc. but really, food doesn't seem to be a trigger for me. This frequency has me practically housebound at the moment and even just sitting here watching TV is uncomfortable. I am ALWAYS aware of my bladder and how miserable it is making me. I'm happy to finally have some hope in the form of treatment but I'm just so tired and I cry a lot thinking about how much my life has changed overnight and wondering if I'll ever feel better.

    Anyway, that's my IC story so far. I've been reading a lot on this board and the ICN site but I know I have a lot more to learn. It just makes it so hard to keep hearing, "Well, everyone's different. What works for someone doesn't for someone else." I know that's true but it really sucks when you're just trying to feel better and want to fix it but every time you think something MIGHT help, it doesn't.
    Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

    Current medications/treatments:
    Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

    Previous medications/treatments:
    Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

  • #2
    Do you suffer from seasonal allergies at all? My bladder feels like yours when I don't take my hydroxyzine... I recently had to double my dose because allergy season arrived and my bladder reacted badly! Most people do find relief from treatment... it sucks that it takes so much time, but there generally is a light at the end of the tunnel, once you stumble upon the right combination of treatments.
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!

    Comment


    • #3
      I usually do. Here is the weird thing: Normally this time of year I wake up every morning with a stuffy nose, swollen itchy eyes and non-stop sneezing. I have NONE of that this year even though the pollen counts have been through the roof. When I mentioned this to my uro she said that it's probably a coincidence. I can't remember why she said she wasn't prescribing hydroxyzine. It was all sort of a blur. After so long of getting no answers, all of a sudden I had a diagnosis and a very aggressive treatment plan. My head was swimming and I even wondered later why she didn't give me some of that but I think it was because she gave me amitryptiline and vesicare instead. Plus, I told her I'd tried taking Zyrtec and Claritin without any effect on my bladder symptoms. I might ask again when I see her but she seems like she is really well-informed about IC treatments and in fact, I've noticed her name on these boards several times. She must've had a reason for not giving it to me but I have to say that I find it really odd that my allergy symptoms just seem to have shifted from above the waist to below it.
      Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

      Current medications/treatments:
      Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

      Previous medications/treatments:
      Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

      Comment


      • #4
        You are not alone. The same thing happened to me. About a year and 1/2 ago, I was at an outdoor party (barely drinking), sitting around talking. That night, I was in the bathroom every 15 minutes. I thought I had a UTI and I went through all of the same steps you listed. It's really life altering getting this terrible disease. It's like it just happens out of the blue!

        Anyhow, I don't drink anything acidic, no caffeine, avoid most fruits and spicy foods.

        I take Prelief with almost everything I eat. I also take Cystoprotek 2 @ 2 x a day, and I take Desert Harvest Aloe 3 @ 2 x a day. This combination has helped me tremendously. I don't have the "pressure" like I have to go anymore, and the frequency is pretty much gone unless I have a flare. And, most of the time I only have to get up 1x a night.

        If I have a flare, I take 6 Desert Harvest Aloe Caps and it is usually gone within the hour. Sometimes I use my pelvic heating pad to help with the flares too.

        It might help to read these books:

        To Wake in Tears: Understanding Interstitial Cystitis by Catherine M. ****** and

        Awakening Through the Tears: Interstitial Cystitis and the Mind/Body/Spirit Connection by Catherine M. ******.
        They helped me alot. Made me realize I was not alone (of course along with this forum).

        Please pm me if you want to chat, and I'll give you my number or e-mail address.

        ***For some reason when I type the author's last name in, it won't show up.

        Comment


        • #5
          Hello, I like you had symptoms come out of nowhere. I had had one bladder infection when I was 20 I believe. When I was 33 I was at my Fathers house at a picnic and ate alot of fruit salad. That night I had to get up and pee constantly. This feeling continued and I was finally diagnosed with IC two years later by hydrodistention.

          It can take awhile to start feeling better with treatment. One thing that has helped me with frequency is bladder retraining. Its not easy but it does help me to go less often and to be able to sleep longer at night before I have to get up to go. To do bladder retraining you try to lengthen the amount of time between voids. Usually people try to wait 15 minutes more for the first week then add 15 minutes each week until youre going every 3-4 hours. From what Ive read its supposed to make the nerves stop firing erratically and making it feel like you have the urge to go all the time
          Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

          “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

          Comment


          • #6
            Originally posted by shopgirl06 View Post
            It's really life altering getting this terrible disease. It's like it just happens out of the blue!
            Yes, no warning whatsoever. It's awful. And because it came on so suddenly I thought that it must just be an infection. I have been on 5 kinds of antibiotics over 6 weeks just in case there was something in there that wasn't showing up in the cultures. I was SO hopeful each time I'd start a new one and then as the days passed and things didn't get any better I was always so disappointed. It's like you get your hopes up so many times that you're AFRAID to have hope because it might just crush you again.


            Originally posted by shopgirl06 View Post
            ***For some reason when I type the author's last name in, it won't show up.
            I think I read on here somewhere that her books aren't officially endorsed by ICN and she's not a doctor so it can't be recommended or something. I knew what you were talking about anyway. I just ordered all 3 of them from Amazon this week so I'm looking forward to getting them soon.

            Thanks for listing what you're taking. It's always good to see what works for some just in case I need to add something else to the arsenal!
            Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

            Current medications/treatments:
            Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

            Previous medications/treatments:
            Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

            Comment


            • #7
              Originally posted by Becky Jane View Post
              One thing that has helped me with frequency is bladder retraining. Its not easy but it does help me to go less often and to be able to sleep longer at night before I have to get up to go.
              Thanks. I wondered if there was anyone on here that had success with it. I was going every 10-15 minutes and then when that first uro dismissed me with some Sanctura capsules I was angry but I took them anyway to see if it would help. They got me up to about 45 minutes but it was still really hard to hold it even after a week. I am trying Vesicare now but I think I need to give it a little more time to see if it works.

              Becky Jane, so are you able to hold it 3-4 hours like you were saying can happen? If so, that's awesome and I'm going to start trying to train again. I don't know if this is the case with any of you but I don't have what I'd describe as PAIN when I hold it. That's what my uro couldn't understand. She said that a lot of IC'ers find it painful when the bladder fills and that's why they void so frequently. She also said sometimes there's period of relief, even if it's for a few minutes. I don't get that sensation. It's just a very, very full feeling like I've been riding in a car forever, drinking water the whole time. I NEVER feel like my bladder isn't angry. Even while I'm peeing it still feels full. The pressure just maybe eases up a tiny bit; like instead of being in the car for 6 hours, it might feel like only 4.
              Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

              Current medications/treatments:
              Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

              Previous medications/treatments:
              Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

              Comment


              • #8
                Originally posted by phoenixgirl View Post
                Yes, no warning whatsoever. It's awful. And because it came on so suddenly I thought that it must just be an infection. I have been on 5 kinds of antibiotics over 6 weeks just in case there was something in there that wasn't showing up in the cultures. I was SO hopeful each time I'd start a new one and then as the days passed and things didn't get any better I was always so disappointed. It's like you get your hopes up so many times that you're AFRAID to have hope because it might just crush you again.




                I think I read on here somewhere that her books aren't officially endorsed by ICN and she's not a doctor so it can't be recommended or something. I knew what you were talking about anyway. I just ordered all 3 of them from Amazon this week so I'm looking forward to getting them soon.

                Thanks for listing what you're taking. It's always good to see what works for some just in case I need to add something else to the arsenal!

                I'm glad I could help a little. I'm still fairly new with this, so I really feel what your going through. Sometimes, I just want to cry and say "why me?", but I know it's just not me, and things could be worse. But like I said, please pm me if you get to a point where you feel like you just want to talk to someone who is going through the same thing. I'm 42, so I guess that's why I can relate.

                Comment


                • #9
                  I will probably take you up on that. At the moment I'm just exhausted. I know what you mean about crying. I was in the grocery store a couple of weeks ago and started crying right in the middle of the aisle because I'd only been gone from my house 10 minutes and I already felt like I was going to bust. I thought, "I can't even do this?" Then, almost as if on cue, I saw a person in a wheelchair and reminded myself that I need to be grateful that I can walk, see, hear, and function in a lot of other ways. But I think it's OK to cry sometimes because you know what? This frickin' SUCKS. Yeah, nobody said life is fair but nobody warned us about this either. I was driving home from the doctor's office last week after I had a panic attack in the parking lot and was looking at all the traffic around me thinking, "I wonder if there's anyone else in these cars that is trying to get home before they pee their pants?"
                  Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                  Current medications/treatments:
                  Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                  Previous medications/treatments:
                  Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

                  Comment


                  • #10
                    Originally posted by phoenixgirl View Post
                    I will probably take you up on that. At the moment I'm just exhausted. I know what you mean about crying. I was in the grocery store a couple of weeks ago and started crying right in the middle of the aisle because I'd only been gone from my house 10 minutes and I already felt like I was going to bust. I thought, "I can't even do this?" Then, almost as if on cue, I saw a person in a wheelchair and reminded myself that I need to be grateful that I can walk, see, hear, and function in a lot of other ways. But I think it's OK to cry sometimes because you know what? This frickin' SUCKS. Yeah, nobody said life is fair but nobody warned us about this either. I was driving home from the doctor's office last week after I had a panic attack in the parking lot and was looking at all the traffic around me thinking, "I wonder if there's anyone else in these cars that is trying to get home before they pee their pants?"
                    Ok, that last part made me laugh :-)

                    I have read so much about IC and I just can't understand how the heck we got this. I mean, it feels like we're hand picked or something. If you try and tell someone what you have, they look like you have 4 heads! So, besides my husband and daughter, I really don't talk to anyone about it, because they don't understand.

                    I wasn't willing to take the Elmiron because I wanted to try the more natural way to try and treat this, and I feel lucky that the things I listed above have given my relief. As far as food, I feel like I'm always doing the trial and error thing. I look for more organic food and things that say "no artificial flavors, and no preservatives". It really does make you cook more of your own food.

                    I just recently found out from this forum that "A&W Root Beer" is safe. I tried it (with Prelief), and it is! So that was something else besides milk and water that I could drink.

                    Just remember, you're not alone.

                    Comment

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