Help! Have I got interstital cystits?

[hellsbelles]

I'm driving myself crazy over this one. I have a constant urge to urinate...no pain but a feeling that I have to go all the time (and a sort of pressure).

This has been going on for 4 weeks now...dr has given me 4 types of antibiotics despite all urine tests coming back clear. He has also done an ultrasound to check my kidneys and ovaries...all fine. He couldn't check my bladder as it wasn't full enough.

He's said that if this dose of AB's doesn't work then he will do a bladder distention under general anaesthetic...which sounds horrific. Has anyone any experience of IC? I have no stabbing pains or problems with sleep which makes me hope it might just be the curable oversensitive bladder. This has just started from nothing and I'm really worried.

thank goodness you are recovering - that's enough to wear anyone out. And yes to a,b,c & d - totally agree.

We are moving within the same area (islington)...though it's crap for schools!

why oh why do I do this to myself...I just thought I'd peak at the 'patient stories' bit on the IC network. Bloody hell. Majorly depressing.

DON'T look at those!! Made the same mistake before diagnosis and really thought I might as well just top myself and get it over with. Go back to Matia Brizman's site NOW and read those for 20 minutes until you feel better!

And Islington - how funny - I'm just up the road in Tufnell Park! Can only afford to rent here, though, so going to have to move - probably to Brockley or thereabouts. Islington's lovely though. But argh, the pain of not being able to go and buy delicious cakes off Upper St! Damn you, IC.

I really think you'll be fine, truly. It's just a case of having to work harder at recovering from this than from something like a burst appendix, say, where something concrete can be done and doctors know what they're dealing with.If you're like us, and determined to get better, it's eminently doable.

One thing I was thinking about doing is taking up meditation! Figured it would help with anxiety and relaxation, none of which I'm great at. Worth thinking about? There's actually a place on Holloway Rd that does it (this has reminded me to look into it!).

PS in case this is helpful, I'm having another really good day today - no pain, no urgency, frequency completely normal. Been to the loo like three times! In fact, I can't actually remember how many times I've been, which is a HUGE step, considering where I was just a month or so ago. I reckon you'll feel so much better when you're actually, actively doing something about it. Taking control is a great relief.

I love hearing that you are having good days! I will go and do a little Maria Brizman therapy now to calm myself down!

Yes - I think meditation is a wonderful idea.

Islington is very very expensive...we were lucky that we managed to buy just before the prices exploded and so make a good profit each time we moved...no way we could start from scratch here now.

Matia NOT Maria. Sorry

Hey Hells - how're you feeling today?

Hi L&S...who'd have thought that a day with terrible period pains has been the best day for ages?!

I feel like I used to. It's so weird. Yesterday evening and all day today (so far) have been great. Just normal.

I know this thing comes and goes and play tricks - but I'm enjoying a little peace from my stupid old bladder.

I did notice that those patient stories on the IC network were really really old ones...most of them submitted about 7 years ago which seemed odd. I hope/suspect that now there is more knowledge the stories aren't quite so breathtakingly horrifying!

The Matia ones are lovely though aren't they?

Hello,

I've just stumbled across this thread in active convos and realised that I have this. I haven't been to the GP about it. It's just something I live with.

I had a few nasty bouts of acute cystitis before I had DD then I had a very long (more than a month) bout of cystitis while PG which was fairly symptomless but kept on showing up in lab results and ended up with me being on ABs for over a month.

Anyway, no flare ups of cystitis since but I do need to wee all the time. I keep on meaning to count how many times I go in a day. It's a lot. And even worse when I've got my period. It almost feels like my womb is pressing down on my bladder .

I don't have any pain. Just a constant need to wee. I have to limit my fluid intake and plan when I'm going to be near a toilet if I'm going out.

Should I see my GP or should I just try some of the diet tips on the IC websites? Cutting out coffee, tea and chocolate sounds like my idea of hell!

ramblingrose, first thing - promise not to look at the patient stories..you will send yourself into a frenzy of unnecessary panic!

I'm new to all this so probably not best to advise but I can tell you what I'm doing:

I have seen the GP and am getting a referral (not officially diagnosed yet). I'm pretty sure that I don't want to go down the traditional medicine route as, like you, I don't have pain so it seems a bit premature. However I do think I want to get some input from a traditional dr...if only to rule out anything else!

The other thing that I've learned through this thread and tons of reading is that IC is a 'catch all term'. So you may read it's a chronic and incurable problem...but that refers to everything that comes under the umbrella of IC - and that term is used when they just can't find the cause of urinary frequency and/or pain.

So absolutely have a look at the diet and try leaving out certain things to see if it makes a difference. I too am horrified at the thought of life without my favourite things...but I'm beginning to understand that the sooner I tackle this...the sooner I may get back to normal (and therefore be allowed to have some of those things back again).

The other thing I've found out (thanks to Love&Squalor and other research) is the sooner you address this the more chance of a good outcome. I do think it's dangerous to ignore as it can get worse.

Thanks Hellsbelles. TBH I'd sort of assumed that it was something that I would just have to live with and that I had a sensitive bladder. Hadn't occurred to me to get it checked out!

Does anyone else find that sex makes it worse? Sorry if that's a bizarre question but it does for me.

I think I could live without the chocolate (for a while) but I'm going to struggle to give up my one cup of coffee a day (and copious cups of tea). I'm always so tired. It will be a real struggle to get through the day without caffeine.

RR - since this thing started for me I haven't dared have sex!

But yes - supposedly it's one of the triggers. Fab eh? All the good things in life and all!

When you visit the drs aware though - it's still quite tricky to get a diagnosis...

There is a thing I keep reading about on all the sites called prelief which can help avoid flare ups when you have forbidden foods (tomatoes are a prime offender apparently). I am going to check with the lady I'm seeing on Friday to see if it's worth trying.

sorry - my sentence about drs made no sense...what I meant to explain is that some drs aren't that up to date with it so you may need to really push for a referral (to a urologist)

last thing (!)...it could be that you do just have an oversensitive bladder...and that's great as I think it seems easier for them to deal with. I'm hoping mine is that as well!

Thanks Hellsbelles. What's the difference between IC and oversensitive bladder?

I don't like tomatoes so that's one easy thing to avoid :)

I've got a really lovely GP so I'll see if I can get an appointment with her. I might try to keep a note one day of how many times I wee in a day. It might help to back up what I'm saying if I can put a number on it.

eg. just to give you an idea of what I meant earlier about planning trips/fluid intake around how close I'm going to be to a toilet, I never ever drink anything before going to Sainsbury's on a Saturday morning. If I were to have a cup of coffee before I went I would need a wee before leaving the house, a wee on arriving at Sainsbury's (only 10min drive away), a wee before leaving the shop and a wee as soon as I got home. That's not normal is it?!

Coming back to the thread after it dropped off Threads I'm On. Its amazing how many people have this condition and very heartening to see so many overcoming it. Its been a long lonely battle for so long for me and the condition only really seems to have got properly recognised in recent years.

Fascinating to read about the posture stuff for littlemama. A really knowledgable lady at the gym looked at my posture one day and taught me some excercises to lengthen hamstrings and correct the balance of my pelvis and stengthen back muscles. Really helpful, I never even linked that to IC but rings some many bells now. I catch myself so often tensing up in my back and pelvis and feeling better if I just relax. Also fascinating that you too found gluten free flour a big help.

Had a rough couple of days, my own silly fault, eating acid foods as we had visitors and just wanting to be normal. Anyway, I ordered some Prereleif over the internet. No chemist has it or ever even heard of it so I'll let you all know how it goes.

So annoying that the knowledge on this thread just doesnt seem to be available to GPs or so many urologists. I think it is because doctors want to 'cure' people and dont know what to do if there isn't a 'cure'. They sort of just seem to dismiss anything they can't diagnose and resolve in a few months.

Rambling - planing your toilet trips sound so familiar while out shopping.

Internet shopping for clothes, groceries and many many other things is a lifesaver.

Oh I'd much rather be endlessly looking for public toilets than just staying at home ordering my food online :(

RR - no it's not really normal. I didn't realise what I previously thought was normal (I was going about 10-12 times a day even before I thought I had this) isn't - apparently 8 or under is normal!

Anyway - it's great you have a good GP. I'm still not completely clear what the differences between IC & oversensitive are. But I'm hoping my urologist will tell me. It does seem that pain can be the main difference (but then you get told mild/early IC can have no pain)...in proper diagnosis they sometimes find ulcers or inflamation on your bladder which helps them say it definitely is IC. It does seem to be a much misunderstood/misdiagnosed condition.

Beta - sorry you've been suffering...let's hope prelief is a help for you.

I have never been one to suffer in silence (!) but I think in this instance that has been to my advantage as I've learned lots very quickly and I'm hoping that will help halt this in the early stages.

I think you are right that it is mainstream medicines general reluctance to embrace alternative therapies that's probably halting proper research into this. So we have to do it for ourselves. I'm going to post here how I get on as I try different things as it's been so helpful to hear from everyone that has been kind enough to share what they've done so far.

8 or under! I must go at least twice as many times . I'm going to count tomorrow to be sure.

Hello all - RamblingRosa, sounds very much as if you have this - frequency, pressure, sex as a trigger - all are definite indicators! I think it's HUGELY underdiagnosed because so many people develop it after childbirth and therefore women just assume it's something you have to get on with.

I'd definitely recommend trying some of the diet tips - and there are lots of other things you can try. I'm doing acupuncture and an anti-candida diet, which seems to be helping hugely today. I've had a week of being pretty much back to normal (tho slightly more symptomatic today - tingling/itching in the bladder, which I fondly think is a sign of it healing!). My frequency has dropped from 14/16 times a day back to 5/6 times, and though I can still feel my bladder, it's all much more comfortable than it was, and the pressure/external discomfort has gone.

Beta, really sorry you've had a crap couple of days - hope the prelief can help.

I've ordered the CD of the woman littlemama recommended - am sure posture is an issue for me as I ALWAYS have tight pelvic floor muscles!

Rambling - just seen what you said about being tired - may be worth looking into the yeast stuff as a possible cause for you. Do you have any other syndromes - IBS, muscles pain, hay fever, asthma or whatever? If yes, and if you've a history of antibiotic use/contraceptive pill use/even sugary diet, it could perhaps be something to do with that .. PM if you'd like any more info!

L&S - I was thinking of ordering that too...does it work on UK dvd players/computers as far as you know? I too have a pelvic floor of steel! I've realised since we've been talking about all this that I do often find that it's all tensed even when I'm not doing kegals..which is obviously not good.

Ooh please do PM me Loveandsqualor. Sounds interesting . I don't know what symptoms are linked to yeast problems. I don't have any problems with thrush. I do get tired. I do have an excessively sugary diet which coincidentally I've just been trying to do something about in the last week as I feel I've been gaining weight.

I was on the pill for years when I was younger but I haven't been on it for about 10 years. I've had the odd bout of antibiotic use (and a few nasty cases like that cystitis bout while pg when I've ended up on a few courses of ABs one after the other).

So what's the link between yeast and IC? Is my excessive sugar consumption the culprit I wonder?