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could I possibly have IC?

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  • could I possibly have IC?

    Hi, I am a 24 year old female. I have a problem with pain when the urine stream is finishing up for the past 3 months. I have been to 2 gyno and 1 urologist, and my gyno couldn't figure out what's wrong with me. They did all the STD tests possible and also a pap smear, everything comes back normal and urine culture 3 times all negative for bacteria, my urologist did a cysto and said he saw cysts around my trigone area in the bladder and that I might have cystisis cystica. He put me on 1 month of nitrofurantoin. but it didn't stop the pain at all. He later put me on 10mg amitriptyline for pain because he thought my nerves might have been inflammed and that they needed time to heal. But I don't feel like the pain during urination is particularly less compared to 2 months ago. Also, about 1 month after the pain started, i would spontaneously getting this burning sensation outside of my urethra and it would last for hours and hours that's extremely uncomfortable. And also my clitoris area started to get really sore when the burning sensation started. And when the burning sensation started, I tend to have lots of frequency but not much urine to pass, and if I do pass urine, it hurts a LOT more than normal. And I noticed that I have incontinence when the burning sensation is present. Do I have IC? I am starting to suspect it because it's been almost 3 months and none of the medication i was prescribed with helped. But when my urologist did the cysto, he told me I dont have IC because he didn't see the typical manifestation of IC symptoms during my exam. But the antibiotics didn't help and amitriptlyne just makes me super tired all the time....

  • #2

    An office cysto will not usually diagnose interstitial cystitis. It's possible that what you have is IC, and I suggest you ask for further testing to find out what's going on with you. Are the cysts in an area that can cause discomfort?

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    • #3
      I figured I would give you another welcome as well. I happen to be a male, by the way. I know none of us can answer the question about whether or not you truly have IC. Of course, it sounds like a good possibility to me. I did notice one urologist had said you don't have IC. Maybe you do need another opinoin now. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I actually decided to look up cystitis cystica as I was not fimiliar with that term. (cystitis...yes) OK. Most of us can understand the frustration that I did sense you seem to be having. By the way, I don't have any incontinence at all.


      • #4
        thanks Donna and statesboro for your support. it sounds like I should really go back to my urologist to get a proper diagnosis, even though the cysto done was extremely painful and I'm kind of traumatized from it

        also, I have a question regarding the bladder pain part. Do you guys have bladder pain with IC? I am not sure if my pain is part of the IC manifestation or not. I noticed occasionally I would get this weird pain (not pain, just sort of mild, but enough for me to feel it constantly and it's not pleasant) right on top of my pubic bone. It could be either on the left side, right side, or in the middle. I am so confused, is that the usual place where people get bladder pain? or is it a bit higher up than the pubic area? I am almost not sure if it's bladder pain because it feels like it's the muscles on top of the pubic bone that's hurting and not my bladder (when i press down on the sore area, i feel mostly bone).


        • #5
          You definitely need to have more testing done. I do have pain in my lower pelvic region, which is where your bladder is. Honestly, it is impossible for us to tell you if what you have is IC or anything else. There are several urinary/bladder/gyno problems that have similar symptoms. I know not knowing is hard, but the best thing to do is see another urologist or the same one and ask for further testing. IC really can't be diagnosed with an in office cystoscopy. Usually we go through an assortment of tests and ct scans as well as mris before a definite diagnosis is made for IC. You have started the process, keep going and keep pushing until you find an answer. You know something isn't right so make sure the Dr doesn't just dismiss your complaints. If they do, find another Dr.

          I wish you the best of luck, please keep us updated.
          Link to the patient information, everything from What is IC? to Disability

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom