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.

hells, do you know what caused the flare up?

loveandsqualor - the gp did say the capsules were better than the juice.

I've bought some urine dipstick tests from amazon. They arrived this afternoon.

how interesting about the capsules vs the juice!

The new book (the one that you just ordered L&S) said IC urine can actually be abnormally akaline...can't remember the science behind it - I need to re-read (brain overload I'm afraid).

So glad the journey went well. How does Deborah keep track of your progression - do you have more tests or is it based on how you are feeling?

ILH - not really sure about what caused it...I was quite adventurous with my food over the weekend and just avoided the major trigger stuff but didn't worry about anything else...so it could have been one of many things.

I wonder if Beta has prelief yet? i can't wait to hear if it helps.

Where can you buy Prelief?

From what I've read, some infections cause the urine to be alkaline, but I don't know how it works with IC.

they've got it here nutri centre and it seems to be on amazon as well!

It gets good reviews on the US IC sites!

I have been waiting or a week for my Prerelief order to arrive. I ordered it online from Nutricentre. Does it normally take this long?

I'd give them a ring Beta - that seems too long.

I just did. They are sending me it tomorrow.

what excuse did they have for not sending before?

How did you fare after your chorizo/red wine experiment?!

And how is everyone else doing? ILH I'm hoping the AB's have kicked in and you are getting some relief finally.

L&S - have the new herbs done their deed or are you still feeling good?

Rosa - are you still about? Are you noticing any decrease in your symptoms?

I've had an annoying few days after the huge respite of the prior 4 or so days. But still it's nothing like as bad as before and at least I know whatever this is can come in dips and waves and isn't always at it's worst all the time if that makes sense. I"m very tempted to start taking my dmannose again until I see Deborah but I suppose I better not.

They had run out of the pack size I wanted and were waiting for a new supply in 2 weeks time. I asked for a larger pack which they had.

Chorizo and red wine was pretty much OK until I went to bed. I didnt sleep well. I get a lot of stomach acid as well as bladder pain I dont know why.

Anyone else suffer from poor sleep with this condition? It leaves me really tired sometimes.

Hey all - checking in - will post properly when I get home, just rushing to pick up DS!

Hello everyone.

The antibiotics are making me feel strangely detached and tired.

Kidneys are not hurting as much and I'm not getting the urge to pee every second of the day. The headache is also getting better.

BeenBeta - I can't sleep with the problem and have to keep getting up every five minutes. Sorry to hear you had lots of acid and couldn't sleep.

Hey ilmh = so glad the ABs are giving you some relief! Hopefully they'll just clear it right up and that'll be that.

I had real trouble with sleep when this began - I'd keep waking up needing to pee, then would be anxiuos and wouldn't be able to get back to sleep. Now down to waking up once in the night (sometimes sleeping through ) and I can get back to sleep again, which I attribute to the diet and acupuncture. Really sorry you're having lots of acid, Beta - any sign of the prelief?!

Hells, sorry you're having a bit of a wobble - how are you now? I'm having another slightly less good day today after a great few days - bladder sore and tingly, though frequency and urgency still holding steady (thank the lord).

Saw my woman yesterday, and she said that the improvement in frequency/urgency suggest that the inflammation is subsiding - good news, obviously. She reckons for me the bladder pain is the result of die-off. Hopefully she's right! I do find the pain a lot easier to deal with than the urgency/frequency.

"Sorry to hear you had lots of acid and couldn't sleep" makes it sound like we are 70's hipsters! If only.

Beta sorry you suffered so much. I haven't got the problems with sleep so that's another reason why I question if i actually have an overactive bladder rather than IC.

I spoke to my Mum via email about her gut issues! And it turns out it was quite a thing for her (no urinary frequency though) and she had to do gluten free for quite a while though she can't remember how long. Deborah had asked me to confirm this and I guess it all adds into the gluten intolerence/gut problems that sometimes seems to trigger this kind of thing.

L&S - sorry you have pain but glad it's for the right reasons (if that makes sense!) - what Deborah says does sound encouraging doesn't it?...did she give you any more indicator of when you can start relaxing a little on the diet?

I feel a little better this evening. I'm busier so it's easier not to focus and I force myself to wait just a little longer between each loo break. This is insane though. I never gave my loo habits a second thoughts just over a month ago - now the dominate my every thought. Oh what an interesting person I have become.

ILMh - it's so great to hear the AB's seem to be making a difference...fingers crossed they continue to do so!

Hells, you just made me SNORT with laughter . I'd go for some class As right about now - imagine they'd take the edge off

V interesting about your mum! Sorry it was a big thing for her. Isn't it funny how your parents can go through a huge kerfuffle like that and you don't have a clue at the time? DS is v sweet about me being under the weather - tells me very seriously "you can't eat this cake mummy because of your sore sore tummy" - but I think he's more interested in the fact that means he gets more cake

I didn't actually remember to ask Deborah about when I could calm down with the diet! What a chump. I did say I wanted another baby, and was thinking about trying in about a year, and she was very confident we'd have it all sorted by then. We'll see...!

Weird thing in my world at the moment -my stepmum's had cystitis now for over a week! Two lots of ABs, it still hasn't cleared. just spoke to her on the phone tonight and trying really hard not to worry that she has this ridiculous thing too. I feel quite anxious on her behalf. She does tend to get it two or three times a year, so hoping it's just bacterial.

Glad you're feeling a bit better this evening. Me too! I meant to say in my last post, one thing I've found works for me if I'm having a mini-flare is to have one of my unctuous(!)baths - seems to reset things. Know what you mean about it dominating your thoughts though. I've become the world's MOST dull person!

ha ha! can you imagine Deborah's face 'I have been so good with my diet and I've found dropping a few tabs has really relieved the symptoms of late '

Good point on the unctuous bath! I remember it helped a lot last time I was really in trouble. Stupid thing is our bathroom is right next to DS's room so it keeps him awake if I have a bath at night! urghh...luckily potential new house has an amazing bathroom so I shall bathe in peace!

How exciting about trying for a baby! Do you remember that my friend said it really sorted out how symptoms...maybe it'll be the same for you (though you'll be better by then anyway!).

I know EXACTLY what you mean about your stepmum...this thing seems to suddenly be everywhere I look. Have you talked to her about what you've got? Do you think she could be over anxious about having it because she's aware of it (which could create the frequency?). It may be worth her looking at the Angela Kilmartin book - understanding cystitis...it's written in such a way I really think it would appeal to my Mum (I'm assuming your step mum isn't 25 years old!) and it has lots of simple tips on keeping normal cystitis as bay. I got a second hand copy very cheaply on amazon as it seems to be out of print now.

I had an email chat with a specialist in the US today...he was fab! He said my symptoms sound a lot more like overactive bladder than IC and was very anti me getting the cysto hydro....but did insist I got the plain old 'in office cysto' to rule anything else out. I just don't know what to think...no one in the industry seems to have a standard answer do they!

Of late I've had about 3 gorgeous invitations to eating out type things...which I haven't be asked to do in ages. I'm gutted as I don't want to be the boring old cow who can't drink and eat normal stuff. I love a glass or two during a meal and it'll be so weird not to drink. I'm thinking of going out next Monday to one of them (as I don't see deborah for my full diet plan till the following friday) and having one 'last supper' so to speak!

bloody hell - I do gabble on don't I! Forgive me.

Hi all

I've been reading this thread for a few days now with interest. I don't know if I have IC - had frequency issues and sensitivity for about 2 years total ( following a colposuspension to reattach my bladder which prolapsed after the birth of dd2).it started just with frequency and feeling uncomfortable in the evenings and gradually got worse.

I ended up having the cystoscopy which showed bacteria deep in the bladder wall but no obvious signs od IC (ulcers I guess?)

I was put on 6 weeks of antibiotics which did the trick for 6 months or so but over the last few weeks the discomfort is returning - again it' really only when I go to bed that I notice it.

So I'm starting to wonder if perhaps it is early stage IC....I have a history of lots of bouts of cystitis, had severe stress incontinence after the birth of DD2 (which the surgery thankfully corrected). If so Im not sure I should be going on another ,ing course of antibiotics.

I have cut out all alcohol over the past week, only 1 cup of tea a day so will see if that helps. Plus have started d mannose after seeing you guys suggest it. So - we shall see if that helps.

Hellebelles - who was the guy in the US you emailed with?

Apologies for all typos - not good on ipad

kitsilano - what a traumatic time you've been through. I do hope the dmannose helps. It's worth cutting out tomatoes for a bit too as they seem like a trigger to lots of different bladder problems (IC, oversensitive bladder etc etc).

I will pm you the details of the guy I emailed...maybe give it a few days before you contact him otherwise he'll wonder about the sudden influx of UK queries!

Thanks Hellsbelles - I'll wait a few days!!

I've been cutting down on tomatoes too - but then had chicken and tomato casserole for supper as I had already planned it for the whole family...so we shall see!

It's the thought of no booze - ever - that makes me feel miserable!

kitsilano - me too! But if you can bother to wade through all the posts, as while back I've did a list that I found in a book - wines that are supposed to be o.k for IC sufferers! I haven't trialed them yet but when I've finished doing the diet the Hale Cline lady prescribes I most certainly will!

Kitsilano - I find if I plan around what I am going to be doing 1 - 2 days ahead (eg travel/work) I can have a drink without too much disruption to my life.

Thanks guys - hopeful news! I actually did order that book as well after reading this thread (I have been silently lurking but taking notes).

I'm planning to be really good for another week or so at least and then see what happens if I have a drink...my husband is taking me to Florence for my 40th birthday weekend after next - I have to say no wine is not on the cards!

well Beta will hopefully have tested prelief by then so maybe that will be another weapon you can use (and allow yourself a glass or two).

Florence will be wonderful - you lucky thing. We were all set for New York for my 40th (this year as well) but we are in the middle of buying a new house so that is now off the cards!