Could use any adivice I could get.

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Last time I posted a few weeks back I was having a really hard time with the CI.   I started the diet, have done the DMCO clinic treatments nothing helps.  My dr treats me like I am insane that my pain is in my head.  I am at my wits end now not only my bladder hurts, feels tons of pressure non stop but my vagina hurts like mad.  Again back to the dr to find out I have anther infection in my bladder.  This will make 12 in six months.  The pain has me up a wall and taking high doses of sleeping med's to get at leas 6 hours of pain free sleep. 

I have another appointment with another urologist down town Toronto its going to cost me a pretty penny to get there she is also a pelvic specalist and hopping she will even remove my bladder I just cant take it any more.   If any of you have any advise or questions I can ask her I would greatly appreciate it.  Hope all is doing will with this horrid problem;

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  • Posted

    Have you tried pelvic physical therapy? I'm on the diet since October, Elmiron since November and the most significant relief I've had is from pelvic pt. It turned out that my left hip was out alignment (sacroliliac joint) and was stressing the rest of the muscles and organs in my pelvis. When the pelvic muscles are too tight (many IC patients suffer from this) it causes pain and can cause/increase urinary urgency and frequency. I hope this helps?

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  • Posted

    Hi Pam, I’m so sorry you’re having such a rough time at the moment.  It’s not helped by you not having a more understanding doctor.  I hope you have more success with the urologist.  My IC was extremely bad - like you I just wanted to die sometimes with the pelvic pressure and pain.  I don’t know how old you are but in my case,  it was made much worse by lack of estrogen (I’d had an early menopause in my early 30’s) As soon as my uro-gynaecologist put me on HRT there was a dramatic improvement in my symptoms.  This is because the bottom half of the bladder lining is estrogen receptive like the uterus and becomes thinner and easily irritated by lack of estrogen.  I know this is what helps me as when I tried to come off the HRT, the awful symptoms came back so I won’t be coming off it again! I have to use vaginal pessaries as well as the systemic HRT pills.  I would definitely ask about this - a good urologist should know about the connection - mine did and his understanding and support is also a great help.  The other thing is to take an anti-histamine (preferably hydroxyzine building up to 50mg a night) There is also a pill called Betmiga which calms the bladder spasms (which is what causes the feeling of pressure).  As you’re in Canada, it might have a different name (I’m in the UK) Make sure you drink plenty of water - this is something I struggle to do as it seems to go against what you want to do! But it really does help as concentrated urine will just irritate the bladder even more.  Don’t gulp loads so you’re rushing to the loo - just keep a bottle with you and keep sipping it throughout the day.  One more thing you can ask about is something called urgent PC or PCNS - it’s like a cross between accupuncture and a tens machine - a needle is placed just above your ankle to stimulate the tibial nerve which runs to the nerve centre in your spine that controls the nerves supplying the bladder and bowel.  It’s a course of half hour sessions once a week over 12 weeks.  I’m on week 9 and I’ve certainly seen an improvement.  It’s said to be 80% effective which is quite good odds! In conjunction with diet and other treatments.  I hope you get some relief soon - I know thes times can be unbearable but you will improve - wishing you well.
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    • Posted

      Hi thanks for the advice, expecially the pill that gets rid of bladder pressure.  Also I am looking for a ic diet ir you know of a good one please let me know.
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    • Posted

      Hi Pam, there is a very handy app you can downloaded called the ICN food list, which is easy to use and tells you which foods are bladder friendly, which are not, and which to try and see (when your symptoms are under control) it’s so handy especially when you’re out and about and can’t remember everything!! Mainly avoid the ‘C’s as in chocolate, citrus, caffeine and carbonated sodas.  It has helped me a lot.  If it burns in the mouth (as in spicy hot) it’ll burn in the bladder.  Think of the IC inflamed bladder as an open wound and don’t put anything in it that you wouldn’t put on that wound! There are plenty of good things you can eat though so don’t despair!  Most (not chocolate) doughnuts are ok! 😀👍🏼

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  • Posted

    Oh and Amanda’s absolutely right - I have a tight pelvic floor too and having physio for that.  Nightmare this IC but lots to try so don’t give up hope!
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  • Posted

    Well went to walk in got a drug for bladder spasms hope it will help for the bladder pressure too.   I cant wait to see my new urologist and talk about a few things that helped other here.  I feel like I have a new hope even though the pain is so out of control.
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    • Posted

      Hi Pam, I’m glad you’ve got something to try before seeing the urologist.  Make a list of things to ask - if you’re anything like me you come out and remember later what you wanted to say!  It is an awful pain and the feeling of always wanting to pee drives you to distraction.   I’m

      always worse in hot weather so make sure you’re drinking plenty of plain old water.  I’d say HRT your best bet if you’re in that age group.  I had years of agony before the urogynaecologist put me on it and it was a life saver.  I still get very troublesome flares but not as bad, and inbetween times I can feel quite normal!  I think it’s a case of having to take lots of different approaches not just one answer for this horrible condition.  Let us know how you get on.  Wishing you well.

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    • Posted

      Hi Shirley,

      You are absolutely right!! It does take many different things to help it. I’ve had embedded infection for 4 years and am on constant antibiotics for it. It’s a terrible life!! Good luck to all. X

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    • Posted

      How did they find out it was in bedded infection, do you mean not treatable by ordinary antibiotics?  I'm also having problems since this started with infections.  I am on my l2 antibiotic in six months.

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    • Posted

      Hi Pam, it is possible to have an infection which is present under something called ‘slime’ (I know!) which can cover the lining of the bladder trapping the infection.  These would need to be diagnosed by cystoscopy.  Are you testing positive for infection and not just positive for leucocytes and maybe red blood cells? Both of these are present with inflammation which doesn’t necessarily mean infection.  The IC bladder will often show positive for these 2 as it is by nature, inflamed.  If this is the case, anti-bios can do more harm than good as they in themselves can cause the bladder to object! With infection you would expect to see nitrites as well as the other things.  Usually, if a double course of antibiotics doesn’t work, there’s not much point in continuing them, unless it’s on a low dose to prevent infections if you have confirmed recurrent ones.  Hope this helps. 
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    • Posted

      My bladder doesn’t work, so I have to self catheterise unfortunately. As soon as I stop all the antibiotics, my infection breaks out of the biofilm and my tests show nitrites as well as leukocytes. The pain is horrific!! 
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    • Posted

      Hi Sam, I don’t know what to say - your situation sounds horrific and I feel quite helpless.  I hope you have an understanding urologist.  I hope they find a way to help you through your pain.  Are you on preventative anti-bios? I don’t know much about the biofilm but I did read an excellent book about it by a consultant urologist who works in Southampton.  He seemed to have a real understanding of the problem and treatments.  His name is Tim Whittlestone (If I remember correctly) and the book is called ‘the calm bladder’ - might be helpful to give it a read.  
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