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  • Undiagnosed IC?

    Hi I'm new here but not new to bladder problems. I started having stabbing pains in my urethra in the spring of 2000 and was misdiagnosed as a UTI and given several different antibiotics to try and then was always told that the culture was negative so stop the meds. However they kept prescribing them because office urine sample would show traces of blood and/or white cells in the urine. Eventually saw a urologist and was given the full workup including cystocopy and X-ray and was told they could find nothing wrong. My GP concluded it was probably "bladder spasms" due to anxiety. So over the past 8 years now I've had some odd bladder sensations but nothing severe like the stabbing pains until just 3 weeks ago. Again it's spring time and this flare seemed to coincide with my stopping allergy medication. I have since been researching IC and it seems I fit most of the criteria. I saw my GYN on Monday and he ordered a pelvic ultrasound which was negative and agreed it's probably IC. So I'm going back to the same urologist and am wondering if that's dumb to see the same guy or not but I don't have much choice in my town. My symptoms are severe pelvic cramping and pain in my urethra. Over the past few months I have had a handful of times where I felt a sudden urge to pee my pants out of nowhere but it hasn't been consistent. I also have no burning on urination. Just pelvic pain, lower back pain and urethral pain (stabbing). I also have a lot of pressure when I sit for too long. I have fibromyalgia, allergies, IBS and gastroparesis (stomach motility problem) as well and I understand all these conditions are common in people with IC. My guess is the urologist won't see anything on the cystoscopy again -is this common? I already take many of the medications for IC like Ativan, Singulair, and Claritin. I tried Elavil in the past and it made me very sick. I guess the next two drugs I would like to ask about are Elmiron and Atarax since mine seems to be allergy related. I am worried I won't tolerate the Elmiron though. Thanks for listening and if anyone has any feedback it would be appreciated! Charisse
    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

  • #2
    Yes, it's normal for an in-office cystoscopy to show a normal bladder, even in an IC patient. Usually, a cysto with hydrodistention (the bladder is stretched under general anesthesia) is what shows the classic signs of IC. Also, a less invasive test for IC is the potassium sensitivity test -- a solution of potassium is placed in the bladder via catheter, and if this reproduces your symptoms, you most likely have IC.

    You don't need to have urethral burning to have IC-- I don't, unless I have a true infection. Your pain sounds like mine, as I have pelvic pain and sometimes shooting pains up the urethra and vagina (like someone is poking around in there with a knitting needle).

    Also, many ICers flare up in the spring and fall allergy seasons -- IC flares tend to go with allergies because some of the same cells involved in the production of histamine in your nose also exist in an IC bladder.

    Sounds like you do need to see a urologist -- if your visit to the same guy is not productive, definitely keep looking. Sometimes finding a doc who knows about IC is tough, but keep at it. The end result is definitely worth it!
    ****
    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.

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    • #3
      Charisse,
      It might be possible you have IC. I'm not a dr, though so deffenitly talk to one soon. If this uro doesnt help you then I would try to see another one. Maybe a specialist in IC. My uro didn't find anything wrong with me during my cysto. then again that was about 2 years ago. I was dxd in oct 06 through the hydrodistention under anesthesia. I have a mild case of Ic but enough to bother me. I have lots of pain, frequency, and pressure. Elmiron would be good to try. It takes about 6 months to start working they said. I saw improvements withing 3 months. Everyone is different, but maybe your body cant handle it. You never know untill you try it. I hope all goes well with your uro appt! Keep us updated! ((Hugs))

      Rachel
      ***Rachel***

      Dance like no one is watching
      Love like you've never been hurt
      Live today like it's your last

      Dxd with IC in June '06

      Comment


      • #4
        Sounds like IC, but then I'm no doctor. You might have to find another one, even if you have to go to another city, I don't know how far you are willing to drive. All of my doctors are about an hour away, but thats because I use to live in the City now I live out in the country and I didn't want to change them, as they all know my history, plus I work in the city so its all convenient to me, except of course, if I'm sick and I don't want to go to work!! But that is rare. Good luck in your hunt for a new doctor. Maybe someone who specializes in IC??

        Comment


        • #5
          Undiagnosed IC

          Jennifer wow your story sounds a lot like mine -especially the way you describe the stabbing pain -I always said it was like someone was stabbing a knife in my urethra and I am very aware of the shape of my urethra and the tube and where it's located during this time when normally I cannot feel the structure of my bladder. The last time I had a true UTI I didn't have any symptoms (they caught it during a urinalysis for something else) so now I'm always paranoid that I'll be walking around with a UTI and not know it since I don't have any symptoms. I have had just a few bouts of frequency over the years so I guess I should feel lucky that I only have the horrendous pain. I am going to be very upset if the uro tells me nothing is wrong again. Your post about how your uro said it had to be IC really hit home with me because my feeling is if it's not IC than what is it? I will scream if he sends me away again telling me nothing is wrong. Of course it's been 8 years since I've seen him and it seems like IC awareness and treatment has come a long way in that time. My feeling from reading posts on this site are that if we can catch it earlier and start treating it that it may not progress to such a bad place. Thanks again for sharing your experience with me. Charisse p.s. -I also suffer from anxiety and it's really not fun to deal with. I have contemplated quitting my job several times over the past couple of years as I have had one diagnosis after another and my health has gone downhill fast but at this point my work has been very flexible with me and I really can't afford to lose the income right now.
          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

          Comment


          • #6
            Undiagnosed IC

            Oh and one more question . . .3 weeks ago when this pelvic pain and pressure in my urethra started it was so awful and the pain radiated to my back. I think it threw my back into a fibromyalgia flare because the pain was so intense that it felt like my skin was burning in my back. I was in bed for 2 days because I felt so awful and I had no appetite (wasn't really nauseated, just didn't want to eat). Is this common in a bad IC flare to feel so sick and in so much pain that you are bedridden? Charisse
            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

            Comment


            • #7
              Hi jennifer.
              I also have motility issues of the gut as well. I was dx with just a regular cystoscopy, the doctor I guess was able to see that I had IC. It sounds like you may have IC to me, but it is best to see a specialist about it.
              Jen

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              • #8
                My cysto didn't show anything and my urologist said to start Elmiron and see this IC specialist in town. I called them, they saw me ASAP, and they did a few tests (one being the potassium sensitivity test). I showed a strong sensitivity diagnosing me with IC (I have never had a UTI and a month of Macrobid and a urethral culture didn't help/show a bacteria).

                Anyways. I dont' burn. I have pressure in my pelvis and only unbearable pain when my period starts. Urgency/frequency is the worst and I can't really hold much in my bladder. My meds seem to really help a lot. I'm on Elmiron, Atarax (big help... I'm severely allergic to a lot of things), Ultram (temporarily), and Elavil (but it knocks me out and I don't know if I can take it... reducine it to 5mg/day because 10mg/day was too strong).

                Hope this helped! I would ask for a potassium sensitivity test and it would be worth it to talk with an IC specialist, even if you have a long drive.
                [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                [

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