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The IC rollercoaster...

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  • The IC rollercoaster...


    It seems obvious to me that I have IC--but not to my doc. I had the cysto this afternoon and all looked well in my bladder--something I know 40% of people with IC share.

    Yikes. The cysto was painful. The urethera was not happy at all. He had a hard time getting the tube in.

    I have pelvic floor dysfunction, something I could have told him last year. My other symptoms include bladder spasms, constant burning, 24/7 pain in pelvic region, long history of UTI's, normal urine cultures though I thought I was having another UTI, had urethera stretching 16 years ago, pain with sex, flare after sex and did I mention 24/7 pain in my pelvis?

    I had a sonogram last week and all looked well in my kidneys.

    Here is his recommendation--and you might laugh.

    He put me on valium for the next two weeks. He thinks it will relax my pelvic muscles. And can you believe this? He shied away from an IC diagnosis because I don't have frequency at night---only during flares. Thanks to this site, I was more informed than he was. Reading Dr. Lowell Parson's interview on this site was so informative--I know that 15% of IC'ers don't have frequency or urgency.

    Next they are going to x-ray my pelvic region and my only treatment right now is pyridium and valium. Is this weird to you?

    Okay, so I'll go along with this valium thing and keep popping pyrdium as I have done for the past 25 years, but as I told my husband...I have a suspicion that this is IC and I'm going to keep doing the things I should--diet, etc. If this chronic condition I am experiencing doesn't go away in say, a month, I will find an IC specialist...even fly out to San Diego if I have to. I refuse to "mess around" with this any longer. I have a career, a family and a life to live and I deserve the right diagnosis.

    By the way, the cysto hurt so much that my legs were shaking, which seemed to annoy this doc. I was in so much pain getting up from the table and he offered me nothing--not a pyridium---or a helping hand or even a word of "you'll feel better later." I'm in bed now and I'm happy to be home near my family...and I have a keen understanding now that I have to be my own best advocate.

    Hey, if the valium works no one will be happier than me.

    If it doesn't, I will find another doctor.

    Thanks for listening. Oh one more thing, he said something like, "People just want a diagnosis of IC so they can be happy that their pain has a name."

    Give me a break.

  • #2
    I feel your frustration. I was starting to wonder if we have the same dr? I was given a PST and my legs were also shaking like crazy because the catheter insertion was SO painful that I was shaking like a leaf and tensed all over. I also felt like my dr was annoyed by this. My PST was negative because I couldn't tell if I felt anything from the solutions or if the pain I had was from the catheter and not the solution -the whole 15 mins was agonizing. So when we finish up he tells me he thinks it's IC and that I should be feeling much better that night from the Heparin he instilled at the end. Well I got a lot worse that night, couldn't sleep, increased pain and in bed for 2 days etc. I got brave and tried one more instill 2 weeks later and again I had an increase in pain. So last week he tells me none of my tests point to IC and now he's not sure I have IC at all. He wants to do a cystoscopy and look at my urethra. I am hesitant to go through anymore of this if he's going to tell me everything looks fine because I know it will put me in another flare. I guess the only other thing he has to offer now his Elmiron so I am just going to see how things go for the next couple of weeks but am also considering seeing another dr. however he is the only IC specialist in my town that I know of. I am an hour north of San Francisco so maybe I'll have to find someone there. I'm taking Benadryl right now but getting tired of dealing with the pain. I've had this pain for 2 months now so I don't see it magically going away
    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


    • #3
      A thought..

      You really should read the interview posted on this site with Dr. Parsons, a IC specialist in San Diego. Here's a quote from one of his statements:

      ...if a female is complaining of urgency, frequency OR pelvic pain - any place in the pelvis.. abdomen.. labia... vaginal... urethra.... symptoms after sex, what else could she have (but IC)? A simple urinalysis will rule out a plain ole infection, which is actually quite rare. History, urinalysis... brief exam... vaginal tenderness over the bladder. A differential diagnosis at this stage would be: #1. IC, #2. IC, #3. IC, #4. Radiation cystitis (which is obvious from the history)

      To me, this is the easiest diagnosis to make because we've always approached it that you have to rule out all of these other diseases when, in fact, they rarely occur. Women do not get recurrent bladder infections, one of out 100 at the most (and that's probably an overestimate).

      He also says:

      At least 20-30% of the patients seeing urologists have urgency, frequency and no pain

      At least 10-15% patients seeing me or another urologist have pain with no urgency or frequency and void maybe 4 times a day.

      15% of patients are currently seeing gynecologists with only pelvic pain (who we demonstrated to have IC) have no urgency or frequency.<

      A diagnosis of IC can be urgency OR pain but most patients will have a combination. The average urologist will see about 5 new patients with IC a week, about 250 a year, and will be lucky to diagnose 20 of them with IC. They will tell the rest of their patients that they have urethral syndrome (which is IC) or recurrent UTI or they are normal as far as they can tell, i.e. that they can't find anything wrong.

      I guess what I take away from this is that dr's are really misinformed. Once everything else has been excluded, this doctor thinks that someone presenting with our type of symptoms simply has IC and they need to be treated. I think it's weird that your doctor "almost" diagnosed you. The truth is 40 percent of people with IC have normal bladders on cystos.

      Keep up the faith and don't stop until you get some answers.


      • #5

        I also read an interview on this site with another doctor who has treated thousands of patients with IC---

        He said that the first few installs DO cause more pain because the bladder is shedding some of the abnormal cells and it might cause more pain at first. This is very normal---but the installs get easier and less painful everytime.
        Here's what he said:

        (drmoldwin) Other medications, such as DMSO (a medication which is instilled in the bladder) decreases the levels of substance P in the bladder wall. Substance P is a chemical that is found higher quantities in the urine and the bladder walls of IC patients. Substance P is a chemical that is responsible for inflammation and is also a chemical that is used to transfer pain information within nerves. When the DMSO contacts the bladder wall, the substance P is released and hopefully the patient's pain might slowly subside. Unfortunately, as the medication works, the release of substance P can cause more irritation and patients often experience a significant worsening of symptoms during the first few instillations.

        Show this to your doctor and maybe try the installs again, knowing that the first few times might make you worse before you begin to get better.