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  • Is this IC?

    I was told by 2 doctors that I have IC though neither one wants to do a cystoscopy since they say it's so painful and won't change the treatment. I have also seen one doctor who doesn't believe in IC - he's been working in the field for almost 40 years and says it's a bunch of symptoms that doctors don't understand that get lumped together but may in fact be a number of different conditions. He said there are many people who have tears in the bladder wall who don't have any IC symtpoms so the cystoscopy proves nothing. He did a urodynamic study that showed I have bad pelvic floor spasms but no bladder spasms. He wants to treat me with biofeedback.

    I don't ever get bladder pain or burning or pain during intercourse. I do get terrible spasms in the left side of my pelvic floor and apparently by my obterator inside my vagina. These spasms made me feel like I have to pee continuously and prevent me from sleeping at all when I have them. I can have several days in a week with no sleep at all!

    I have noticed that when I eat lentils the spasms seem to get worse though I haven't been able to be sure about any other foods. Sometimes I eat something, the spasms get worse that night but was it the food that caused them? It can be 10 hours later!

    I have also been going to physical therapy which has focused on hip stretches. MY therapist noticed that my left hip is tight and I had some slight pain in my lower left back where I herniated a disc 10 years ago. The other day I threw my back out altogether and could barely move. I have no idea if the source might be the back or if it was just weakened from being told not to do my usual back exercises (they would aggrevate the pelvic floor spasms) and because the hip stretches put pressure on the back or if I really do have IC along with back problems now. Any ideas? Can it be IC If I have no distinct bladder symptoms except urgency (I usually just feel that on the left side where the spasms are)?

    does anyone know a good doctor in NYCwho speacializes in IC?

  • #2
    The Patient Handbook at http://www.ic-network.com/handbook has some information about symptoms and diagnosis. There's no possible way for me to guess whether what you have might be interstitial cystitis --- it does sound like a possibility.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, 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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      thanks for your posting.

      Yes, I understand that no one can actually tell me if I have IC. I am hoping though that someone might be able to tell me if these symptoms (or lack of symptoms) sound familiar. It sounds to me like everyone has pain and symptoms actually located in the bladder.

      How long after eating a trigger food does it take to have an effect?

      Comment


      • #4
        I suppose it is a possibility.

        I don't feel IC pain in my bladder unless I let it get too full. I feel all my IC pain in the vagina and vulva regions.

        I too, get spasms sometimes. Usually in reaction to holding my urine too long or fear of sex hurting.

        I liken it to Pelvic Floor Dysfunction because it can happen even if I think I'm relaxed.

        Another possibility is that your pudendal nerve could be irritated from back problems.
        Sonja

        Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

        Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

        IC Diet: Very diet sensitive, esp. to spices.

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        • #5
          Thanks so much! I went to the orthopedist last week who is ordering an MRI. He said it could be that a bulging disc is pressing on nerves. I hope that's the answer! I also think I might have PFD.

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          • #6
            I too have a bulging disc

            Suzanne~ I injured my back and now have a bulging disc that they discovered through an MRI. I have nerves that are being pinched at the
            L5 S1. This is the nerve branch that leads from there straight to the pelvic organs. That is a huge discovery in understanding why all of the sudden I have horrible bladder spasms. I believe that the IC was triggered by my back injury...not the caue of my IC. I think I have a predisposition to bladder problems but the back injury brought it to the forefront in a grueling way. Since the injury, I too began getting horrible spasms of my pelvic region as well as pain that stemmed from my lower back, wrapped around my hip and landed at the pubic bone. I since have been seeing a physical therapist, and chiropractor who has been stretching me and and adjusting me. I was taught back stretches and exercises and told to lay off the heavy weight lifting and long distance running. I have now switched to an eliptical machine that I use for 30 minutes and then do nautilus weights rather than free weights which has taken a lot of pressure off my lower back. I feel so much better and my spasms have significantly decreased. I strongly suggest you consult with your PT who will teach you to exercise and stretch the lower back to relieve the pressure off the nerves that lead to the pelvic region. I hope this is your answer as it appears to have been mine. All along I began watching my diet very strictly as well as taking my meds (Elvail, Adarax) but since I have added the PT and Chiropractic DR. and stretches I have improved tremendously. Good luck with all your DR. consults.
            Peace
            Danica


            Stopped taking Elmiron for the time being-- could not tolerate side effects

            ADARAX 25mg at night and at times morning
            Calcium mag citrate w/ vit.D
            Prelief 8 to 10 a day
            Cystoprotek 4 a day
            MSM

            ~God's mercy and grace are infinite~

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            • #7
              PFD's a definite possibility. If you are in NYC, Dr. Robert Moldwin, a world famous IC doc, is there. He is really good with both IC and PFD. He might have a waiting list, but it might be worth trying to get in to see him.
              ****
              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.

              Comment


              • #8
                Thanks to everyone for their very helpful responses. It is great to hear, Danica, about your disc problem (sorry you are having it though!). It really is the only thing that makes sense to me. My gut feeling is that this isn't really IC though perhaps like you there are some underlying IC symptoms that are extremely exacerbated by a pinched nerve and a buldging disc. One week, I was eating normally, drinking wine, the next week I had horrific spasms that caused contant and extreme frequency and spasms that have remained. the my back collapsed last week.

                Just like you, the tension goes from my back through my left buttock and hip around the front down to my pubic area and around the back under my thigh and into my groin. the spasms go down my leg and the urgency feeling is just on that side. I hope to get my MRI soon!

                Thanks Jen for the referral. I will look up the MD you mentioned. Perhaps he can give me a more clear answer.

                This has been so helpful!

                Best,

                suzanne

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                • #9
                  I agree with Jen on seeing Dr. Moldwin if your Drs. are thinking IC. Dr. Moldwin is at the Long Island Jewish Medical Center. He is very well respected in the IC community. He has written a book on IC called "The Interstitial Cystitis Survival Guide". It is for sale in the ICN Shop. He has also given several lectures here. IC patients from across the country fly to New York to see him....he is THAT good! You are very lucky to live near him!

                  I hope you get some answers soon and start feeling better!

                  Hugs,
                  Amy

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