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  • ?? about hydrodistension

    About 6 years ago I was having what felt like UTIs but my culture wouldn't grow, had hematuria only. I was sent to a urologist who really thought I had IC, and recommended the hydrodistension procedure. I had this done , but when I woke up I was told I don't have IC. I had a urodynamic study done shortly after this but it too was fairly normal. The good news was that my symptoms went away. I stopped having these apparent UTIs completely--until now. Had a very bad episode in the fall, went to an urgent care center and given antibiotics. After about a week or so the symptoms went way for the most part. Now this past week I again felt I had a UTI but my culture grew nothing. My UA was also completely normal. However, I am having the constant feeling that I have to urinate along with a burning pressure pain. I also have intermittent sharp little pains in my bladder area that kind of radiate into the vaginal area. Also very bad low back pain and hip pain. I saw my regular Dr. today and she saw the normal results of everything and looked at me very puzzled. I ask to be referred to a urologist which she agreed to. Now I really want to go to one that knows something about IC and won't think I'm crazy. Any ideas in St Louis area? My question is that since apparently my hydrodistension said I don't have IC is this completely ruled out or can it still be IC? I'm very frustrated because I have a lot of chronic pain in my legs, hips and back. Over the years I have episodes with tingling, weird sensations in my feet, and it hurts to be even slightly touched on different areas, especially my legs. However, even though I've seen neurologists, had MRIs, etc. I have never been officially diagnosed with anything. I'm constantly tired and I think my husband thinks its all due to some emotional instability-- in other words it's all in my head. Sometimes I think maybe it is but then the pain is sooo real-- it's causing the emotional instability! I'd appreciate any help, support and advice. Thanks!

  • #2
    Yes, it is entirely possible to have IC and not have it show during hydrodistention. And some people experience remissions for extended periods following a hydro, which could explain your long period without symptoms. I went two years symptom free after my first hydro.

    I think it's good that you will be seeing a urologist --- you might ask about a potassium sensitivity test.

    One thing I do suggest and that is to put yourself on an IC diet --- you'll find it in the Patient Handbook at http://www.ic-network.com/handbook Some people with IC find that single step helps more than any other.

    I absolutely assure you that your bladder pain is not "all in your head." I had a gyn tell me that before I was diagnosed and I very promptly changed gyns!

    Warm hugs,
    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
      Very pithy comments, Donna, thanks for sharing your vast knowledge with us!

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      • #4
        Hi, I don't know if this helps, but I have had a condition called firbromyalgia since I was 13 and as part of that condition I have had symptoms similar to what you describe including uncomfortable tingling in the body (often on one side), fatigue and tender points that really hurt when pressed. These symptoms are commonly part of fibromyalgia. However, 2 years ago severe bladder pain started for me as well and in the beginning I had very painful lower back, hips and legs with this. Now the pain is more directly in the bladder and less spread out. I do not know if my bladder symptoms are IC, are part of the fibromyalgia, or if the two conditions are the same thing. You might want to look into fibromyalgia as a possibility, but not suggesting you have it because I really don't know, but just thought I'd mention it in case it is of any help.

        Take care and your symptoms are so not in your head. It is hard with conditions that are not well known or well understood in that people often just don't really understand what you are going through. I have been told that my migraine headaches I get are "all in my head" by a family member and is kind of upsetting and frustrating, but in the end they sometimes start to get it and realise the suffering is a real physiological thing that is happening to you.

        All the best and hope you start to find some answers soon.

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        • #5
          Wombat -- You know, that's kind of funny, your headaches are "all in your head." Where else would they be? Silliness aside, we've all been down that road of being told we weren't sick, etc. And it is hard because both fibro and IC are diseases that are not well understood yet.

          Hang in there, guys.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn
          ___________________________________________________

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


          On the Beach with IC

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          • #6
            I've actually had my mother in law, who is a message therapist and works on me some, tell me that she thinks I have fibromyalgia and my aunt has been diagnosed with this and has mentioned it to me also. I guess my problem is that I've never had a doctor do anything but run the routine tests(cbc, UA,chemistries, thyroid, etc)- which are all normal and then dismiss me. What kind of Dr. do you go to that will consider these things? Thank you all so much for the support and encouragement. I'm so glad I found this network.

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            • #7
              Have you had anybody look at your spine? I read that sometimes there's stenosis of the spine that causes the spongey material between vertabrae that sort of condenses and presses on the nerves that control the bladder. I mentioned to a friend that I had seen that and perhpas the stenosis I have is causing my bladder problems. She had gone with me for my hydro and saw the pictures the doc took of my bladder. She said she doubted that mine was caused by the spinal problem because of the pictures.
              It's a shame that you have to go from doc to doc to get results. With all the specialists it takes so much time to have each one note your history and then put it all together. I think it's Kara who has assembled a team of docs to help her. It seems to be working for her.
              Keep trying, and let us know what we can do.

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              • #8
                Back pain

                I sure would ask for a lower back work up. All the nerves that run through the pelvis and lower back can cause all kinds of pelvic floor symptoms, bladder symptoms, leg and foot pain. Usually a good Uro if they know you are having back pain will have you check this out.
                Sammi

                Sammi

                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)

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                • #9
                  Hello again,
                  As far as fibromyalgia goes, rheumatologists are often the people who deal with it and diagnose it. It was a rheumatologist who diagnosed me. However, his only advice at the time was to get fitter, which really didn't help that much because I was already doing my best with the limitations of pain and fatigue to do that. However, in the last year and a half I've had a great doctor who is understanding about fibro. I now take 50mg of amitriptyline (Endep is brand name) each night. This helps with pain, sleep and bladder symptoms. I think it may be the same as, or similiar to, the Elavil that some people on this site mention, but not sure. Amitriptyline is one of the tricyclic anti-depressents, but is used in doses of about 5-75mg for chronic pain (doses over 100mg are used for depression). It does have some side effects, but most of these happen in the first couple of weeks and then settle down (e.g. nausea and sedation). However, everyone is different and suited to different meds, and so may not suit some people. I also find I have to have a good balance in my life between activity and rest and minimise stress. Often if the worst symptoms are under control, it is that much easier to get by.

                  It would be good if you could find a good rheumatologist, or at least a doctor who is very understanding and will look beyond just doing routine tests that come back normal and stop there (I have been through that process many times). Like IC, I think fibro often ends up being a diagnosis of exclusion. It seems to be the case that sometimes you have to shop around to find someone who is really helpful and understanding. I did read a good book which i think was called "Fibromyalgia: dealing with pain that won't go away". The author was a rheumatolgist whose surname I think was Goldenberg or something similar (sorry, haven't got book with me right now). I did find this helpful as a balanced overview of fibromyalgia.

                  It is interesting the comments about the spine and the pressing of the nerves that control the bladder. I have been going to a chiropractor who practises a gentle form of chiropractic, which helps with my general pain, but not really so much the bladder pain which is the most severe. If planning to go to a chiro i'd always recommend to go look for someone good (accredited) etc. I might look into the stenosis of the spine for myself, just in case it has anything to do with my pain.

                  Take care everyone.
                  Warm hugs

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                  • #10
                    I hope that you can find a great doc that specializes in IC to help you!!

                    ~Claudia

                    "A heart is not judged by how much you love; but by how much you are loved by others."
                    ~ The Wizard of Oz

                    "If I ever go looking for my heart's desire again, I won't look any further than my own
                    back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


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                    • #11
                      Thank you all again for the good info and support. I was actually going to make an appt. with a chiro this morning. I talked to my mother in law again and she recommended the chiro whose office she does some massage at. She says she's good and also does acupuncture which might help. Has anyone ever used this to help symptoms? I'm having a bad day as far as the bladder symptoms go. I need to make an appt. with a uro too or maybe a rheumatologist? I wish I could find one Dr. to take care of everything! It's encouraging to hear maybe they do exist. I guess I'll start doing some research. Thanks again everyone. I'm looking at trying the IC diet too.

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                      • #12
                        About 6 months after my bladder pain started in 2005 I tried something called Bowen Technique which apparently works on acupressure points which I think are related to the same points in acupuncture. It involves the practioner applying a certain movement briefly across these points (doesn't hurt). For example, they do it on one part of the left arm, then they will do the same spot on the right, then they leave you for a couple of minutes and then come back and work on the next point and so on. After my first session I had the first good sleep I had had in 6 months. It didn't take away my pain but it certainly made it more bearable and seemed to make my body more at peace. Just thought I'd mention this in case it is helpful. I haven't had acupuncture so can't comment directly on that. Would be interested to know if anyone else out there has had it for their bladder symptoms and whether it has helped?

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