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 Still no diagnosis

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sarah1234



Posts : 13
Join date : 2016-11-07

PostSubject: Still no diagnosis    Mon Jun 19, 2017 8:14 pm

Even though my cystoscopy showed glomerulations in my bladder the urologists at Box Hill Hospital still refuse to diagnose me with IC because I have a large bladder capacity and I don't go to the toilet enough. My bladder still reacts to certain foods and medications and I've had many urine samples that show white blood cells (some with red) and have no or mixed (apparently contaminated) bacteria growth. Even though I have no diagnosis of IC the urologists at Box Hill suggest I have bladder instillations but I refuse them because they're only a short term solution and there's too much risk of another UTI so I don't see the point. I also have pelvic floor dysfunction and the urologists like to blame most of my pain on that, it's very frustrating.
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lak78



Posts : 24
Join date : 2016-01-05
Location : Brisbane, Australia

PostSubject: Re: Still no diagnosis    Wed Jun 21, 2017 12:23 pm

That's super frustrating for you. I also have glomerulations, good bladder capacity & don't have frequency & I was diagnosed with IC straight away. My urologist also said that those with good bladder capacity seem to respond better to treatments. I also have a friend with IC who has good bladder capacity & no frequency. IC is different for almost all of us, can you try another urologist? Have you tried pelvic floor therapy? It's supposed to really help
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sarah1234



Posts : 13
Join date : 2016-11-07

PostSubject: Re: Still no diagnosis    Wed Jun 21, 2017 1:25 pm

Yeah I've done pelvic floor physio and it helped with the pain I get when I sit down but I can't afford a private physio so I'm with the public system and I haven't had physio in months. I've actually seen a few urologists at Box Hill Hospital and one private urologist who put me on heaps of antibiotics, Cipro being one of them. Cipro damaged my bladder even more. I've seen a private urogyn who's meant to be one of the best and she says I don't have IC. I had an appointment with the Royal Woman's Hospital in Melbourne in July but they cancelled it and changed it to the 31st of October which is frustrating. Are you in Australia? I'm wondering if this strict diagnosis of IC is an Australian things or just the people I've been seeing. I hope you and your friends with IC are doing well and I hope your bladder capacity stays the same. I've only been sick for about 18 months and I'm worried about having more frequency in the future if this keeps going on with no cure.
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lak78



Posts : 24
Join date : 2016-01-05
Location : Brisbane, Australia

PostSubject: Re: Still no diagnosis    Wed Jun 21, 2017 1:35 pm

I'm in Brisbane & was diagnosed nearly 5 years ago based on my cystoscopy showing the glomerulations. My IC started off as frequency only & after the birth of my first child, pain became the issue. I do get frequency during a flare, as does my friend, but we both still have good capacity. Have your docs offered any other possible conditions they're thinking it could be??
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Andi2016

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Posts : 88
Join date : 2016-01-07

PostSubject: Re: Still no diagnosis    Fri Jun 23, 2017 8:05 pm

I have good bladder capacity and rarely have urgency or frequency. Mine started off with urgency, frequency etc with a normal acute UTI and then turned into mostly pain symptoms. I think this is when they throw in the Painful Bladder Syndrome diagnosis. My urologist used the term PBS because he said he didn't believe in IC (same thing different name???). From talking to others, I think there seems to be a bit of confusion among everyone's urologists and GPs as to what's IC and what's PBS. Neither label is helpful anyway.

A few years ago I came across a study paper that explained the term IC was being phased out and replaced with PBS. It didn't really interest me then, but I wish I could find the paper now to read what organisation was behind the phasing in and phasing out and why.
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sarah1234



Posts : 13
Join date : 2016-11-07

PostSubject: Re: Still no diagnosis    Thu Jun 29, 2017 3:38 pm

I guess it doesn't matter what it's called as long as it's being treated. The only treatments my urologists at Box Hill have suggested is pelvic floor physio which helped a bit but they've cut down on it now. The urologists also offer bladder instillations but I refuse them because of the risk of infection and they are a short term solution. I also refuse them because I'm worried that the long term effects some of these of these drugs could further damage the bladder. The doctors at Box Hill Hospital say that it's mostly my tight pelvic floor muscles causing my pain but I know it's the bladder as well.
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Padub



Posts : 2
Join date : 2017-06-30

PostSubject: Re: Still no diagnosis    Fri Jun 30, 2017 3:11 am

My consultant, up the minute before he did my cystoscopy did not believe I had IC as I also have good bladder capacity and when I am well, I don't even have to get up during the night and don't have to go to the LOO too often but I still have IC ! I find marshmellow root great, if your bladder in inflamed, I take about 1 spoon of it in warm water, swish it around for a minute or so until lightly coloured and then drain the root and drink and it forms a coat of mucous on your digestive system and bladder and gives good relief. As far as I know, most people can tolerate it. Don't take within 2 hours or so of any medication as it may prevent the medication absorbing properly into your system.
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