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  • All tests negative--then is it IC?

    I am a little confused on how to know definitively if you have IC. Most uros do not like to use that term because it does not identify an underlying problem. All tests I have had have been negative; this includes in office cystoscopies and hospital (under a general) cystoscopy with a biopsy. I am told there is nothing wrong with my bladder--yet I have all the symptoms of IC. How can that be possible? Could it be a neuro-transmitter problem in the brain? Or could it be that tests cannot see all layers of the bladder? Or is it an allergy? Is it an auto-immune problem? If it can be all these things, then saying you have IC doesn't really say much. Anyone have any thoughts on this?

  • #2
    It's very possible to have IC and have it not show on hydrodistention. Have you had a potassium sensitivity test? If not, you might ask your uro about having one. I know it's frustrating having pain without knowing why.

    Donna
    Stay safe


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    • #3
      Do you have any Fibro SX? Any known autoimmune diseases ?

      I'm new to all this myself and reading way too much. I have many SX of Fibro was was told years ago by a smart [email protected]@ Rheumy that's what I had when I had a very high ANA and he did not want to fool with me any more. But I did not have any of the tender points. Anyway, I got much better after that for several years. But, I digress....

      Anyway, since lately I've been feeling back like that again, I've been looking into Fibro, and the bladder SX seems very similar to IC, but also the 2 seem connected.

      And thoughts on this? I know I saw a couple of ladies on here who also suffer with Fibro. I imagine those with the ulcers would definitely set the 2 apart, though.

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      • #4
        Confused about abbreviations

        What is SX and what is Fibro? Sorry to be so ignorant...I am new to all this. Do you mean fibromyalgia? Does that have similar symptoms to a UTI?

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        • #5
          JAH,
          Sx is short hand for symptoms and fibro is short for fibromyalgia which is an inflammation of the connective tissue and joints that also has trigger points which are palpable centers of pain with outward radiation.

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          Barb
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          • #6
            Hi jah,

            Sorry for the confusion! One of the set of symptoms of Fibromyalgia is pelvic pain, bladder pain, urinary frequency, pain with intercourse, basically most of the symptoms of IC.

            Have you ever had any of the other Fibro symptoms? Or any autoimmune diseases?

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            • #7
              jah,

              You sound just like the type of patient that waits years to get a diagnosis because their doctors don't "like" to make a diagnosis of IC. It doesn't matter what they "like", if it talks like a duck and walks like a duck....

              According to the ICA website, 10% of patients have a negative finding on the hydrodistension. And Dr. Moldwin in his survival guide says that even patients with severe symptoms can be negative on this test. I suggest a new doctor if you can find one and some new tests. Donna's suggestion of the potassium test would be a good place to start.

              My family doctor did a urinalysis and had an ultrasound done. He poo-poo-ed the idea that acidic foods were an irritant and told me to wait awhile and the symptoms would go away. I read enough on this website to know I needed to push for a referral. If you have the symptoms of IC, keep reading and keep pushing for an answer. Don't let doctors keep you from a diagnosis and treatment.

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              • #8
                Diagnosis

                I was diagnosed with I.C. 10 years ago. At the time I did not have pain. Only frequency and urgency. I started having a lot of pain about five years into this. I took 80mg of oxycontin and it helped immensly. I still tek it as needed about 20mg.

                Most of my symptoms are urgncy and frequency with occational pain but not like 5 years ago. Especially when I start my period and I never had almost any cramps before.

                Anyway IN the last two years I went to two doctors and one insisted I have pelvic floor disorder and the other insisted I have OAB(says she does not like to diagnos I.C. even though she is listed on the net as treating it and other uro's in town recommend her. Last September she insisted the only treatment was interstim. I left. I went back to her forgetting a lot , last month and she insisted the only treatment was large amounts of ditropan and cathing myself all day. I will not return to her.

                Two questions. How do I get word out how terrible a doctor she is even though she is supposed to be a specialist with I.C.? There is more (a lot more) negative stuff about her "mis"treatment of me. Secondly I had two hydrodistentions with biopsies. Noone would give me any result except to say I had I.C. So what is gong on with this? Should I insist on getting my records and try to interpret them myself? THe little i have read I am not sure if a biopsy finding is definitive for I.C.?
                Help!

                Irene

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                • #9
                  Me Too

                  my new urlg says hydro showed no ic. this is only my second urlg but it looks like it won't be the last . i think my husban thinks just maybe this one might be on to something. it's all very confussing and even harder to explain. my last urlg had my go to a head dr,]. because i was so mad . i have A TOUGH TIME RELAYING JUST HOW I FEEL AND THE PAIN, I FEEL. AND I DON'T COME ACROSSED TO WELL AT TIMES. BUT WHAT DO YOU DO WHEN YOU ARE IN PAIN AND PEEING RAZOR BLADES AND THEY'RE LOOKING AT YOU LIKE THEY DO??????? DEPRESSED!!!!!!
                  JACKIE

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                  • #10
                    Jah, I don't mean to scare you, but it is possible that you are being lied to.

                    The first uro I went to was also the kind that didn't "like" to diagnose IC. He was a pediatric urologist, and so, had no experience treating the disorder, although he had been trained in diagnosing it. Because of he chose not to share the information in my cysto+hydro with me, it took me a full year to get diagnosed. My story was recently featured on a health website, and I'm going to repost part of it here, to further explain what I mean...

                    When I was 15, and a Sophomore in high school, my urinary symptoms returned in ernest. I began experiencing urgency, frequency, and most imporantly, pain! When I explained my symptoms to my GP, she told me they were all in my head. Well, I knew they were not, so I immeditely found a new GP.

                    My new GP believed me and was very compassionate towards my pain, but she didn't really know how to help. She just sent me home with antibotics. When I went to the ER, they also just prescribed antibotics. I told my GP that I was still in pain, so she said she would refer me to a urologist.

                    ...

                    The pediatric urologist that my GP reffered me to came to see me in the hospital room, and gave me an appointment to see him in his office. This was in about September of 2004.

                    Well, I went to see him, and got put on some meds. I went to another urology clinic; they didn't really help, and I went back to the pediatric uro. In October, he gave me a cysto+hydro.

                    Now, was happened next was pretty weird.

                    The cysto+hydro clearly showed I had IC. No, that's not the weird part yet! To quote the report:

                    PREOPERATIVE DIAGNOSIS: Urgency and frequency.

                    POSTOPERATIVE DIAGNOSIS: Interstitial cystitis.

                    But, when my mother inquired about the results of the report, the urologist told her that it was only "a little red", and there was no reason to worry. Although he had diagnosed me on paper, he never told me I had IC. I think it was because of my age. Some doctors still tend to think of IC as a disease only for older women.

                    I went to an adult urologist from there, still thinking I had no diagnosis. My urgency was down to about 15 at this time, but my pain was still real bad. I tried the IC diet for several months, but I felt no significant improvement. Then, I went to a pain clinic. I tried a lot of medication during this period, although I was still "undiagnosed". This is how things remained until December, when my health insurance ran out. I went off all prescription meds then, but kept experimenting with OTC meds and herbal meds. The pain gradually calmed down, though it remained constant.

                    I got my health insurance back April of 2005, so I went right back to my adult uro. I kept trying treatments and meds to treat my symptoms. Then, July of 2005, I had a breakthrough. I was sitting in the office with one of my uro's nurses, who was browsing through my file. Out of pure curiousity, I asked if I could read along with her. She agreed, and I picked up the file and sorted through it. When I saw my surgery report, I nearly fainted...
                    You see, because my first uro was not "comfortable" diagnosing me with IC (although he seemed quite comfortable using it on paper) it took me a year to get the diagnosis that I should have gotten when I woke up from surgery.

                    Please, ask your uro if you can see your surgery report. If they refuse, that is a red flag. You have a right to read and have access to your own records.

                    Good luck, and remember, you deserve to get answers

                    Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                    Current IC treatments: menstrual suppression
                    Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                    As-needed treatments for other conditions: Klonopin, Ambien

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                    • #11
                      Just thought I would throw these ideas out there in case it might help someone. I recently found out I've had Lyme disease for 14 years! And Lyme can be strongly connected to bladder symptoms. I also found out I have an enteroccocus infection (found out through United Medical Lab) -- after being told for almost 2 years I have "no bacterial growth". If you are looking into Lyme testing I would recommend Igenex or Bowen lab. They are two of the best labs out there.

                      Hope you find some answers!

                      Erica

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                      • #12
                        This is kind of crazy....

                        Well, ever since I was like 13 I've had bladder and bowel problems. These last couple of years I also started getting sick a lot, very low immune system, body aches, muscle aches, all over really bad, allergies, restless leg syndrome, etc. etc. etc. You name it, I had it. I also had an extremely high ANA but nothing else. I have been searching for answers like crazy about all of this because my life was going down the tubes, and fast. So then I started reading about gluten intolerance and I had all of those symptoms. I didn't have full fledged Celiac Disease but I tested positive for the gene, gluten sensitivity and casein sensitivity (cow's milk). Well, I went off of all gluten and dairy and the immune system went back to normal, no more muscle aches, body aches, restless leg and IBS. It all went away. But the bladder problems were still there. It seemed like I was always having a UTI, but I never tested positive so the doctors never helped me. Then I started getting a yeast infection once a month, and then it was there 24-7. Sometimes it would be mixed with blood. My Mom said she had that before and the doctors used to tell her it was her bladder lining and it was from too much acid. Well, I figured out that everytime I ate any refined sugar, the yeast, blood, kidney pains and abdominal pains would get 10 times worse. So I took out anything processed and no refined sugar. No candy. And the yeast and blood haven't been back since. But I still have bladder problems, pains, urethra burning, bloating, frequency and feeling like I sometimes have to PUSH my urine out and it comes so slow and so light. I haven't gotten the 'diagnosis' of IC yet, but my doctor keeps saying he has to PROVE it before he can help me. I had the cystoscopy and my lining was inflamed but now I'm waiting for the potassium test which is in 3 weeks......

                        Anyway, I'm writing because taking the gluten out has changed my life. Look it up or try the diet. Gluten is in everything, but I swear it has saved me from living every day feeling like an 85 year old (I'm only 22). Just a thought, but when I hear people talk about fibro. the first thing that comes to mind is gluten and how bad it may be.

                        Danielle

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                        • #13
                          Lyme disease is the "great imitator"

                          Lyme disease is the known as the "great imitator" since it can cause symptoms of pretty much any disease. Many people with Lyme have been misdiagnosed with Interstitial Cystitis, Chronic Fatigue Syndrome, Lupus, Fibromyalgia, among others.

                          I am 26 years old. I was diagnosed with IC, bipolar disorder, TMJ, Chronic fatigue syndrome, among others. But all those things are almost certainly caused by chronic Lyme disease that went misdiagnosed since I was 14 years old.

                          I saw a Lyme specialist in New York City on Nov. 13th and he strongly suspects that I have chronic Lyme disease and babesia (a co-infection of Lyme). The tests for it aren't that reliable and I tested negative but have many of the symptoms (air hunger, extreme fatigue, nightsweats, excessive sweating during the day). Babesia is a malaria-type infection.

                          As well, the specialist examined me and found a classic Bartonella rash on my arm. It has been there for many months but nobody knew what it was. Well he knows. Bartonella is another Lyme disease co-infection.

                          So now I am on treatment: Cedax (cephalosporin antibiotic), Azithromycin (antibiotic), Mepron (anti protozoal for babesia), Diflucan (for yeast) and Intramuscular Bicillin antibiotic injections. I am also on treatment for my thyroid because now it is low. As far as I know my cortisol levels are going up but I will have to have that re-checked soon.

                          The Lyme specialist said that Lyme seems to love the female bladder. It can really irritate the bladder. He has treated thousands of patients and has been treating Lyme for 15 years so I'm sure he knows his stuff.

                          ~plainjane

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                          • #14
                            Originally posted by walnut
                            How do I get word out how terrible a doctor she is even though she is supposed to be a specialist with I.C.?
                            Try www.ratemds.com You can rate her and write a review there.

                            ~plainjane

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                            • #15
                              You might want to see your gyno because some symptoms of IC are similar to endometriosis.

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