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  1. #1
    ICN Member
    Join Date
    Apr 2012
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    4

    Could this be IC? Looking for help

    Hi, everyone. I've been reading posts on this site for a week or so now, hoping to find some clues about my bladder. I would really appreciate any insight you can provide...

    I have a long history of frequent UTIs (twice hospitalized for kidney infections) and have a "sensitive" bladder (for example, my bladder bothers me if I don't stay well hydrated). However, more recently, I have been fairly UTI-free.

    About two weeks ago (right after my annual OBGYN visit and a transvaginal u/s) I began experiencing urgency/frequency and thought I might be getting a bladder infection. I took a TON of cranberry supplements (a mistake, I now realize) and drank lots of water, but the symptoms got worse. Finally, I went to a minute clinic and was given Cipro without any testing, as well as a Diflucan (because I have been having yeast infections lately). Symptoms did not improve w/ the Cipro -- so I did some internet research, learned a little about IC, and adjusted my diet. Around the same time I also took the Diflucan. Things got a tad better (from the Cipro, diet, or Diflucan, I'm not sure) but were still VERY bothersome. So I went to my regular doctor who found no infection and referred me to a urologist. I met with a very nice physician's assistant at the urology office. She gave me Vesicare to try -- but it does not seem to be helping. She also said it was way too soon to worry about IC...

    My main symptoms are frequency and urgency (at times fairly intense, and at other times mild) -- with a sort of burning or hot feeling that seems to happen if I've been holding my urine for a while. I'm okay at night. I haven't noticed an obvious connection to diet because I'm so up-and-down during each day, but I'm still trying to be being pretty careful (no coffee, alcohol, carbonated drinks, etc.).

    Anyway, I'm feeling scared (and uncomfortable!). Does this sound like IC? What is the most accurate way to diagnose IC? Can some of the diagnostic tests make symptoms worse?? And since I'm still mostly functional right now, should I avoid/wait before having any invasive testing? Please help! Thanks....

  2. #2
    ICN Member
    Join Date
    Mar 2005
    Posts
    555
    A lot of good information here; http://www.painful-bladder.org/pdf/D...tment_IPBF.pdf

    IC is not psychosomatic
    Although many patients may experience a worsening of their IC symptoms as a result of physical or
    psychological stress, it is particularly important to emphasize that stress as such is not believed to be
    a cause of IC and IC is not a psychosomatic illness. The pain, frequency and urgency and consequent
    lack of proper sleep experienced by IC patients and the impact of the disease on every aspect of the
    patientís life may themselves be a significant cause of not only total exhaustion, but also stress,
    tension, anxiety and depression.
    Impact on family life and relationships
    IC has an impact on the entire family from many points of view. It alters your relationships with your
    partner and children because your bladder condition means that you cannot act like a normal parent
    or a normal partner. As an IC patient you are tired and irritable from lack of proper sleep, from
    coping with the pain and from the constant trips to the bathroom. The inability to cope, to look after
    the family, to do normal things with your partner and children, may give the patient a sense of guilt.
    Patients may be so anxious about when the next unpredictable flare is going to occur that they try to
    do too much at home for the family and thereby actually induce a flare. Other patients may suffer
    from continuous unrelenting pain that makes them so tired that they are continually exhausted.
    Members of the family donít understand IC at all because they canít see anything wrong on the
    outside. So unless they are very understanding, they may become resentful at the impact on their
    lives. If available, family counselling may help family members to understand the problems of the
    patient and to help the patient to solve the needs of the family in a low-stress way.
    http://www.auanet.org/content/guidel....cfm?sub=icbps

    Videos of cystoscopies can be seen on the ESSIC website at: http://www.essic.eu/videomenu.html
    Diagnosis a relief
    Many patients will have seen numerous doctors and specialists before finally getting the right
    diagnosis. Patients who, despite seeing innumerable different doctors, still have no diagnosis can
    become absolutely desperate with pain, frequency and frustration to the point of being suicidal. Many
    will have been told time and time again that "it's all in the mind". It can therefore initially come as an
    immense relief to a patient to be given the diagnosis of IC, a disease that actually has a name to it.
    Patients feel that their long history of pain and debilitating symptoms is at last being taken seriously by
    the medical profession.
    Important: Negative test results do not necessarily mean that a patient does not have IC
    Even after all these investigations have been carried out and if the results are negative, this still does
    not necessarily mean that the patient does not have IC. Some patients may exhibit no abnormalities
    during the above investigations, while nevertheless displaying all the characteristic symptoms of
    interstitial cystitis. The most important part of the investigations is to exclude all other identifiable
    causes of the symptoms (so-called confusable diseases).
    Exclusion of confusable disorders + IC symptoms = IC
    Pain management should
    play an important role. If
    the pain is very severe
    and fails to respond to
    standard treatment, a
    pain clinic referral may be
    advisable. No patient
    should be left in pain!
    Bladder hydrodistension or inflation (stretching)
    Bladder hydrodistension or stretching is not only used for diagnostic purposes but also sometimes for
    the treatment of interstitial cystitis in selected patients. Distension of the bladder has been used to
    treat IC patients since 1930 with varying results. Distension is carried out by filling the bladder above
    its known capacity. A well-known procedure is the Helmstein method where, under epidural
    anaesthesia, the bladder is stretched for three to six hours by means of a balloon inserted in the
    bladder. Distension can cause temporary exacerbation of symptoms in IC patients for a few days.
    Results of this procedure are variable and the duration of the improvement unpredictable. It is
    currently thought to have a beneficial effect in 30%-50% of patients. Many patients report that their
    symptoms return within three months. Regarding the role and value of hydrodistension as a therapy,
    recent studies indicate that it may improve symptoms in only a minority of patients. Hydrodistension
    should be undertaken only with the greatest caution in patients where Hunnerís lesions are known or
    suspected to be present due to the high risk of bladder perforation and subsequent bleeding.

  3. #3
    ICN Member
    Join Date
    Apr 2012
    Posts
    4

    More confused now...

    Here is the latest -- About three days ago (just after my initial post), I called the physician's assistant I met with at the urology office to report that I was not improving with the Vesicare (she said to keep with it until my appt next week). She also said that Strep B was found in my urine culture -- she called it "contamination" from my vaginal area -- and prescribed three days of an antibiotic called Levofloxacin and a Diflucan (preventative, since I've recently had some yeast infection problems).

    I was left with the impression that she didn't feel strep B was not the cause of my bladder problems, but rather something that had just found its way into the culture. However, yesterday -- the day after I took my second antibiotic pill + single diflucan -- was a really, really good day. I felt almost normal again. I was also very careful with my food yesterday too.

    So now I'm trying to figure out what made yesterday so great, so I can repeat it. It is interesting to me that my symptoms lessened the first time I was on antibiotics + diflucan at the exact same time (i.e., right after diflucan and day 2 of antibiotics). Of course, I have no idea whether the diflucan or antibiotic or diet or none of the above are the reason for my improvement yesterday. And this morning doesn't feel quite as good (but I also currently have period cramps... figures).

    So here's what I'm wondering...

    Can strep B actually get in your bladder (and not merely show up as cross-contamination)? And, if so, could that be the cause of my symptoms?

    Is it possible for yeast (or even another bacteria) to be in my bladder but not show on a culture? (Worth noting: I suffered from a very persistent and nasty yeast infection that even spread to my skin about a month and a half ago.... and can't help but wonder if there is a connection.)

    Thanks to anyone with insights, stories to share, etc. The past 2-3 weeks have been so tough, and I this site has been helpful in so many ways. Thanks!

  4. #4
    ICN Member
    Join Date
    Mar 2011
    Posts
    1,394
    I have heard some say that they are extremely sensitive to yeast even if there is not enough to signal what the criteria is for yeast infections. I was having a major burning and irritation problem a long time ago and decided to try a one day anti yeast insertion and darn if my bladder irritation didn't go away even though I did not have a documented yeast infection. In the beginning when I was first diagnosed and having symptoms anytime I had to be put on antibiotics for a tooth infection my bladder symptoms disappeared for two days but then returned. Apparently antibiotics also have some anti inflammatory properties so I'm guessing this is why my bladder felt better for a few days on the antibiotics because I never had a urine culture show bacteria present.

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