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Suggestions for a Urologist in the UK

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  • Suggestions for a Urologist in the UK

    Hi fellow sufferers

    This post is mainly directed at anyone in the UK as I am struggling to find a Consultant Urologist who has good knowledge of IC and the treatment options. I have been suffering for over 2 years and in that time I’ve been through 3 hospitals and about 4 consultants and no one has given me a proper diagnosis or given me any treatment that has helped me. My symptoms seem to mirror IC but with the added bonus that if my bladder has more than 300ml, then I go into full urinary retention and get severe agonising pain until I am able to void which can sometimes take an hour or two. During that time, I am in severe pain and this has been going from once a day, now to nearly every time I void which can be very frequently as I am terrified of suffering full retention with the agonising pain and distress that this entails. I am at my wits end and the only solution I’m given is intermittent self catheterisation which can help except a number of times it has failed as my whole pelvic area “shuts down” and contracts. The only solution was a Foley catheter for a week which isn’t a realistic option and I’m worried will just mean my bladder gives up even more and I just as well resign myself to surgery which I really don’t want to do at 50.

    I’ve been told my bladder is inflamed from cystoscopy (thanks Sherlock) and I have some cystitis but not been given an IC diagnosis. I’m so desperate to find some relief and a proper diagnosis but so far have not been able to get the right help I need. Can anyone recommend a consultant urologist in the UK who knows about IC and related conditions please? I cannot carry on being left with no treatment or help. Thanks for listening.

  • #2
    to the IC Network.

    It sounds like you are having an extremely difficult time. I don't have an answer for you, but if you haven't already, you could try some of the things that are helpful for IC patients --- are you following an IC diet? That's something you could try while you work towards a diagnosis.

    I hope some UK folks will have suggestions for a knowledgeable, caring urologist for you.


    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

    Comment


    • #3
      Hi Donna, many thanks for your reply. Yes, I have looked at theIC diet and it is an area that I have started to introduce. It is not as straightforward as I’m currently suffering with gout and I am allegedly diabetic and previously I suffered with ulcerative colitis until that went into remission with immune suppressants. I’m not anti conventional medicine, I just can’t find out what is wrong and so I’ve received no real medical help with meds to try. I need to factor in low purine and low sugar/carb foods as well. To be honest I reached a point where I didn’t know what to eat but I have given up all of the obvious bad stuff and not much has changed really. I’m battling all these chronic conditions and the more I read, the more hopeless it seems. You end up feeling like you’re a failure because you follow certain things and they don’t work or start to and then something else goes wrong. I’m also frustrated with the whole conventional vs alternative war that rages within all conditions - why we can’t have integrated approaches is beyond me - but there is usually one camp vs another mentality and I often feel it is the poor sufferers in the middle not knowing what do or who to believe. If someone told me drinking paint would heal you, there are people desperate enough to believe them and I do understand that some hope even if so distant is better than having no hope. I’m currently that far down in my mind - often I can’t find the mental energy to pick myself up - I feel beaten by it all and don’t have the energy to keep going.

      Comment


      • #4
        I understand what you are going through. My worst time with IC was before diagnosis --- having a diagnosis was like being handed validation for how I was feeling. At the time I was diagnosed not much, if any, thought was given to a diet connection. I learned for myself which foods and drinks are a problem.

        One thing you might do is to keep a detailed diary for a few weeks, listing time of day, everything that goes in your mouth, urinary frequency (and about how much each time), activities, pain levels. That can provide clues to things that help you feel better, along with problem areas.

        I hope you will feel better soon.

        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

        Comment

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