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  • #31
    Hi Holly,

    Just to let you know I see Dr Catherine Temelcos in East Melb also where Anita Clarke is, I think they work together on the same floor. Catherine is great she was the third specialist I saw and being female she is very understanding. when I saw her on my first appt she straight away suspected it was IC and it was. Also she is very good with her appointments you dont have to wait long to see her.

    Good Luck with everything.

    Lorena
    Formerly lorenab

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    • #32
      Thanks very much Lorena! It's scary not knowing who is good. Did she do a cystoscopy to diagnose? I'm still waiting to have my follow-up session with the gyn who did my cystoscopy (because I had to do a hysteroscopy as well) but he said my bladder is perfectly normal. I don't know whether that means he did or did not look for hunners ulcers and those glomerulations but he said he saw no signs of IC. But the symptoms suggest IC or PBS. Do you know if they say it is not IC if you don't have those ulcers or glomerulations in Australia? It seems in the US they don't go by that, but rather the symptoms and ruling out all other causes. So much to learn while being quite out of it!

      Thanks so much for the name.

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      • #33
        Hi Holly,

        My uro did a cysto with a hydrodestention, ic will only show up with they do the destention with it. Before I found catherine the other specialists only did a cysto and they said my bladder looked normal. If they only do a cysto your bladder will always look normal even if you have ic. No I didnt have ulcers but I did have plenty of the red broken veins, she gave me pictures of my bladder also. she also did a biopsy but that was negative. did you get a cysto with a hydro done? what symtoms have you been having?
        Formerly lorenab

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        • #34
          I kept asking him if he was going to do a hydrodistention and he kept saying yes. Then just before the surgery he said a hydrodistention is always done w/ a cystoscopy....hmmm.....after reading here I've learned there is filling the bladder to capacity and filling it over capacity which is the distention part. Though he seemed to be aware that some people w/ IC are made to feel better from a hydrodistention for a period of time. He said he was going to take pictures and I intend to show those to the uro I'm scheduled to see.

          My symptoms are crazy frequency - on a bladder diary w/ 2 ltrs of water I went 30-44 times. If I drink less I'm better. Intense pain which feels like urethral area + intense pressure which feels like pelvic floor, enough to cause pain on it's own. Nurofen plus didn't relieve it and neither did diclofenac given to me at the ER when pain was severe. It took Panadeine forte to relieve it. Some days I was getting by w/ an ice pack between my legs. It felt so inflammatory and the GP thought so too so I was afraid to use any heat. The ice only worked by numbing the area, when I took it off, the pain came back. I've had a renal US, no stones or abnormalities, I also had a negative biopsy with the cysto. Drinking all the water they want you to for several days after the cysto definitely brought back severe pain. I'm drinking less than 2 ltrs now and having less pain but still some.

          Meanwhile he has me on vesicare. At first he said I'd feel relief w/ the vesicare in a couple of days but after a week he said it's too soon to say it's a treatment failure.

          It's been a week since the cysto and I'm feeling a different sort of pain in addition to the pain I had before. He's checking me for a UTI, won't have that back until tomorrow. Don't know if it's still recovery from the cysto, the vesicare, (causing retention) some new symptoms or what. Very frustrating. Using a microwave heating pad did help w/ pain last night, so got by on panadol only. It doesn't feel like a UTI.

          If I'm not satisfied with the uro I'm definitely calling one of those two women in east Melb. I sure hope I didn't make a wrong decision having the gyn do the cystoscopy. There were just possible uterine cancer signs (negative) and the idea of waiting was intolerable. I sure did not want to have two separate general anaesthesias. And I would hate to have another cysto now!

          Thanks for your help:-)

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          • #35
            Hi Holly,

            Yes a distention if filing up your bladder with water to the capacity that your bladder can handle when under. the capacity they stretch it at can never be done when you are not under it will be too painful. My uro told me my capacity but I can not remember and she said my bladder was smaller. I am not too sure if my bladder has shrunk due to ic or i have always had a small bladder. Yes some people do experience a little pain after the cysto/hydro and also frequency/urgency. I experienced frequency/urgency after mine then after a few days it went away. also not all cystos are done with distention.

            Please do not stop drinking water it can be more irritating to your bladder.

            if you are having pain in the urethal area it could be urethitis which can be located at the neck of your uretha (sorry about the spelling). rosalie who is another aussie and comes on the forum has urethitis. I am sure she will happy to explain her situation.

            with the frequency side of things are you sticking to the diet? I know when I eat something bad my frequency goes up and also when I am about to get my period and my first day of my period. also things like aspirin and Ibrofren painkillers could be a no no for the bladder.


            My first specialist was a male gyn he only did a cysto.

            Go back to your uro and get pictures of your bladder. if you are not happy move on to another doctor. sometimes it can take a few doctors for you to see until you find the one you are most comfortable with. I had one doctor tell me its in my head!!! I was so furious. I knew there was something wrong with me so I just kept trying with other doctors.

            Holly I hope I have not over whelmed you with info. I am trying to help.

            Please feel free to ask as many ??? as possible









            Originally posted by Hollyd
            I kept asking him if he was going to do a hydrodistention and he kept saying yes. Then just before the surgery he said a hydrodistention is always done w/ a cystoscopy....hmmm.....after reading here I've learned there is filling the bladder to capacity and filling it over capacity which is the distention part. Though he seemed to be aware that some people w/ IC are made to feel better from a hydrodistention for a period of time. He said he was going to take pictures and I intend to show those to the uro I'm scheduled to see.

            My symptoms are crazy frequency - on a bladder diary w/ 2 ltrs of water I went 30-44 times. If I drink less I'm better. Intense pain which feels like urethral area + intense pressure which feels like pelvic floor, enough to cause pain on it's own. Nurofen plus didn't relieve it and neither did diclofenac given to me at the ER when pain was severe. It took Panadeine forte to relieve it. Some days I was getting by w/ an ice pack between my legs. It felt so inflammatory and the GP thought so too so I was afraid to use any heat. The ice only worked by numbing the area, when I took it off, the pain came back. I've had a renal US, no stones or abnormalities, I also had a negative biopsy with the cysto. Drinking all the water they want you to for several days after the cysto definitely brought back severe pain. I'm drinking less than 2 ltrs now and having less pain but still some.

            Meanwhile he has me on vesicare. At first he said I'd feel relief w/ the vesicare in a couple of days but after a week he said it's too soon to say it's a treatment failure.

            It's been a week since the cysto and I'm feeling a different sort of pain in addition to the pain I had before. He's checking me for a UTI, won't have that back until tomorrow. Don't know if it's still recovery from the cysto, the vesicare, (causing retention) some new symptoms or what. Very frustrating. Using a microwave heating pad did help w/ pain last night, so got by on panadol only. It doesn't feel like a UTI.

            If I'm not satisfied with the uro I'm definitely calling one of those two women in east Melb. I sure hope I didn't make a wrong decision having the gyn do the cystoscopy. There were just possible uterine cancer signs (negative) and the idea of waiting was intolerable. I sure did not want to have two separate general anaesthesias. And I would hate to have another cysto now!

            Thanks for your help:-)
            Formerly lorenab

            Comment


            • #36
              Oh Lorena, no I'm not getting overwhelmed from the help, the help and info is great. I really appreciate it.

              I have only learned of the diet yesterday so I'm starting on it. Very tricky as a vegetarian w/out tofu. I'm also going to have to try fruits which may irritate my fructose malabsorption but whatever, I can't just stop all fruits.

              I'm drinking less than 2 ltrs, not sure how much, I just don't have anything suitable for the pain when I go over and can't keep taking panadeine forte or even nurofen plus because they are so strong and so constipating. I'm not letting my urine get concentrated, I know that.

              urethritis, I'll have to look that up and see if the symptoms seem to match. Today I haven't done much research because sitting causes pain. I think I should get one of those donut cushions in a hurry.

              I think it's this website http://www.painful-bladder.org/diagnosis-treatment.html

              that made me think you can have PBS with the same symptoms of IC so I'm wondering if that is what it is. I see the gyn who has the pictures, etc, in a week and I'll ask him more questions and move onto the uro.

              ta!

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