IC : A Better Day

Finally a day with less pain!

Interstitial cystitis has a mind of its own, it makes up the rules and you must follow. You have no choice, no control. 

Two weeks ago my symptoms worsened, for what reason I do not know. I ate the same things, drank only water, took my meds… but the last two weeks have been awful. That is until today!

Finally a day of moderate pain but manageable levels. I rode my horse, played with my son in the garden on a beautiful sunny afternoon and took a short shopping trip to my favourite butchers for some local  free range organic food.  

Will I sleep tonight? Would be lovely to have a good sleep after two weeks of interrupted slumber. It would be the icing on the cake and Im praying this isn’t a blip. To have two good days in a row would really cheer me up!

I have received an appointment with my Consultant in four weeks time. This will be the first time I have seen him since the failed procedure on 28th December 2012. I have mixed feeling about this, on one hand I am really angry that (1) He never explained the possible negative outcomes. (2) He didn’t bother to see me post-op and (3) There was very little post-op follow up. I was left to get on with it basically.

On the other hand, what is the point of seeing him at all?! I know there is nothing more that can be done and I know I’ll just be annoyed the moment I see him, annoyed at his lax attitude to my treatment. There are no other options apart from removing the bladder.

Maybe one day scientists will create a cure or an artificial bladder… who knows! 

I live in hope. 

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14 thoughts on “IC : A Better Day

  1. Glad today was better. I am wondering what a consultant is? Is that a dr.? 4 weeks is a long time! You have not had IC for too long if I remember. There may be other options that will help, even now. Took me a long time to calm that angry organ down, to learn what made my IC worse, and made it better. There is hope, and hope itself honestly makes me feel better.

    • Yes a Consultant is a specialist Doctor. I will have had IC five years this coming July. Ive tried all the available drugs and some alternative therapies too.
      Thank you, today has been a littler better also. Amazing how a slight improvement can make you feel top of the world.

  2. Hope it stays good. Get your thoughts clear in your head for the consultant visit. They are supposed to outline all the possible negative outcomes before a procedure – he has been negligent if he didn’t do that. Is it possible you signed a document without reading it thoroughly? In my days as a dental nurse there was a form the patients were given before wisdom tooth extraction outlining all the possible side effects (loss of taste is one! Imagine!) people just signed it without reading it or asking questions.
    I’m not suggesting you go the “I’ll sue you for negligence route” I’m not that sort at all! But look up the patients rights on the NHS website, it’s bound to be there somewhere, you deserve to be listened to or even apologised to. x

    • Thanks M! I did sign for the anaesthetic etc. I will prepare some questions. Feel so let down really, when I thought this op might change my life.. well it did! For the worse. Anyway, two good days in a row. Pain at a lower level and rode yesterday and today. Big smiles! x

  3. Glad you are having some relatively pain free days. Make sure you draw up a list of questions for your Consultant. Life with long-term invisible illness is no fun, and you get very little understanding and sympathy from those around you day-to-day because you ‘look fine to me’ xx

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