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I may have the classic symptoms of this disease

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  • I may have the classic symptoms of this disease

    My name is Frances. I think I have the classic symptoms of Interstitial Cystitis. My main symptom is Noctura. When it hits me it hits me at night just when I want go to sleep. I could run to the bathroom anywhere from ten to twenty times a night for two to three hours every five to thirty minutes. I also have urges and pressure in the pelvic and urethra area. Sometimes my urethra hurts. This started when I was about 23 years old in 1999. At first I thought it was because I drank too much diet soda and water and I was trying to maintain the weight I lost. However, it would slowly get worse. It creeps up when I least expect it and sometimes this would last anywhere from one night to an entire week. By the next day I'm too tired to do anything that required complexity. I went to a general practitioner when I was 24 years old and they did a urine test and it was negative. I was stunned because I don't understand how a person could go to the bathroom all the time especially at night and still not have some kind of infection. It would come and go for another two years until I finally got my own health insurance.

    At 26 I went to a gynocologist for the first time in the my life to see if this was gynocological. At the office that was where a bladder infection was found. I was prescribed a week of antibiotics. But it still didn't clear up so I went to urologist #1. He looked at my urethra and saw that it was very narrow and had to do a sonogram and a cystoscopy. I had these things done two weeks later and he found that I had a tight and narrow urethra and as a result of this I had this tendency to contract urinary tract infections. I had a severe infection when I was just eight years old and I a slight one when I was eighteen years old. I was prescribed an antibiotic, detrol, a dietary supplement and a cream to apply to the urethra. Well the problem got worse to a point I was running to the bathroom more than ever especially during the day. So I called him and he said that this was going to be a chronic thing. There was something about him that I didn't like and that was, "Go get a boyfriend and he will open you up." I know he was joking but this wasn't a joke and to prescribe medications and tell me I'm going to have this the rest of my life made me feel like a worthless piece of ****. A few months later when I went back for a urethra dilation, the infection cleared but the frequent urination existed. Even the gynocologist said I didn't have an infection.

    I went to urologist #2 who diagnosed me with various bacterial infections and prescribed me antibiotics but still the problem persisted. He had me go through a urodynamic study which showed I had a tight and narrow urethra and a bladder that contracts small amounts of urine at a time. He reccomended ditrophan. I went to another gynocologist thinking that a woman would be more helpful than a man but her attitude was that my urine was negative for infection and her attitude was the stop drinking at night and stop drinking soda. I have had frequent urination at night on and off for another seven years but the problem would subside for a few months and then wham it would come back. I have cut back on caffeine only drinking one can of diet soda a day and on occassion chocolate milk. Then in 2007/2008 problems started again and I went back to urologist #2 and they did a urine output test and showed that the urine output was normal. I have had normal urine cultures from various doctors since 2003.

    I think my frequent urination also happens around my ovulation and around my menstuation. I noticed just before my period I am running to the bathroom every five minutes during the day and night. Although nightly doesn't happen as much until now. This week I had three nights that I was running to the bathroom ten to twenty times in a two to three hour time frame. Can't figure out why but I think my diet may be the culpurt. I'm 35 years old now. I have seemed to have high intolerance to acidic foods and drinks. I had heartburn a few months ago and was diagnosed with mild acid reflux disease at 28. I have tried to lose weight but even when I have lost weight I have had acid reflux problems. It it isn't acid reflux it comes as a form of frequent urination especially at night.

    A few months ago blood was discovered in my urine by my general practitioner. He thought it was my period but I had my period the week before. So he did another urine test and it was normal. My white blood count was fine. And sometimes now when I get my periods I sometimes spot during my periods. I feel very itchy where the part is where I urinate. And sometimes when I wipe there blood comes out.

    I think I have a family history of this because my great aunt also had these problems and when I think back to all the symptoms she may have I believe she had IC. She always expressed a fear of having to go to the bathroom while on the train to work and everytime we would go to pick her up to go somewhere she would have to go to the bathroom about five to six times before she actually was ready to go and while on trips she would have to keep going to the bathroom. And she would always be running to the bathroom at night. She had the same procedures I had but nothing ever worked.

    What bothers me so much is these doctors have these fancy medical degrees on the wall and they have idea about IC and they only go with what they know but when traditional medications don't they don't want to do further tests. It seems that we have to educate them on everything.

    So do I go back to a new urologist and mention IC to him/her? I know I need to educate myself on this because these doctors know nothing. So do I bring the material for him/her to read? Let me know what you guys think.

    Thank you

  • #2
    Good morning Frances,

    I'm sorry that you have been suffering with this for so long. Getting up that many times each night must be keeping you in a constant state of exhaustion. And that remark your doctor made about the boyfriend was very inappropriate.

    My IC-like (still in process of being diagnosed) symptoms are relatively new so I don't have as much experience or knowledge as others on this board. But, this is what has helped me:

    Try the IC diet.
    http://www.ic-network.com/diet/2009icdietlist.pdf
    Eliminating "trigger" foods and drinks seem to help a lot of people on this forum. It did wonders to reduce my frequency and urgency.

    Keep a food journal. Doesn't have to be fancy. Just jot down what you ate and when you ate it.

    Keep a voiding log. Again, doesn't have to be fancy. I keep note of when, any pain, if urgency was way out of whack for output..... I also keep note of any pain, pressure or other symptoms that may occur between visits to the loo.

    These journals helped quite a bit in both determining any trigger foods and helped me discuss my symptoms with my urologist.

    It would be well worth giving another urologist a try. If you do have IC, there are many medications/treatments you could try that seem to help a lot of people on this forum.

    And it couldn't hurt to bring a copy of the current IC treatment guidelines. Just because a doctor specializes in urology, it doesn't mean they specialize in IC.

    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Good luck and I hope you are feeling better soon.

    Pam

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    • #3
      Fran, I would find a urologist who specializes in IC. If that is not possible then at least get on Elmiron and amitryptilline and follow the IC diet.. You will improve!

      Comment


      • #4
        Fran

        Hi Fran,

        Sorry you are suffering so much! The nighttime urination sounds terrible!!

        I do not currently see a uro, my gp is more compassionate and willing to work with me, I am lucky there! I just brought along all the info I had on IC treatments and he is willing to prescribe and acknowledges I actually know more than him, this way, I find info on here and bring it to him on what to try next....This forum is a godsend to anyone with this condition, I have learned so much!. Maybe you could give your GP a shot? This way I can see him for free and still get medication.

        amitryptilline cut my nighttime urination from 3x per night to 0x. I know, nothing in comparison to you, but it is worth a go as Barbm said. Now I have come off it I am at 1x per night, I did have a bad reaction, otherwise I would still be on it. I think PT helped with this a lot also….so something you could look into?

        I can not stress enough how much diet helped my frequency! I still only void half of what I should be but there are less frequent trips.

        Diagnosis is not everything, I have yet to be 'formally diagnosed' but everyone is pretty sure that this is what I have, just because you haven’t been dx does not mean you can’t start appropriate treatment. Ami and the diet are a great place to start. Ami took 1 month to work for me but that’s because I had to work up so slowly to tolerate it. I started at 2.5mgs and worked up to 25mgs.

        Cystoprotek has helped my pain and sensitivity. ( I think) and it is a natural alternative to Elmiron. But I am into the natural stuff where possible 

        Take prelief with any thing you eat to avioid acid if you think this makes your symptoms worse, could be worth doing while waiting for a Uro / Doc that will treat you properly.

        Better days are ahead!

        Claire
        TMJ Dysfunction 2009
        Vulvodynia and/or PFD 2010
        IC, based on symptoms alone 2010.
        PCOS March 2012

        8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

        Currently using: IC Diet...pain meds as needed
        Medications / treatment tried and discounted:
        Fluconazole 150mg 1 per week for 6 months (yeast)
        Endep 25mg - 4months
        Lyrica 75mg - 2 months - FLARE
        Oxytrol patch - I think this caused retention.
        Countless creams, lotions and potions.
        Cystoprotek - no change in symptoms
        PT - for 1 year
        Various herbs and supplements

        Comment


        • #5
          You are your best advocate

          I feel your frustration and went through years of misdiagnoses. And even now that I have been diagnosed and seen the pictures of my messed up bladder I still have issues when dealing with my family doc. She does the best she can so I do a lot of the research and take it to her. She goes through the info and we figure out a plan while we wait to get into my uro . You have to be your own advocate and bring what ever info you can to them. The more you understand the easier it is for you to get your concerns across and the information may help the dr understand more. I think like any disease you need to know as much as you can to get the help you need. Good luck and my prayer for you is that you find a caring doctor who will take you serious and get you the help you need

          Jacquie
          Jacquie

          Alberta, Canada
          Diagnosed in 2005
          Servere Allergies

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