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.

Hey kits - Florence! So jealous. Hard not to have a drink there...!

How's everyone feeling today? I started taking oil of oregano yesterday - still feeling ok ... will keep you posted!

L&S - was that one that Deborah suggested or did you find it yourself?

I'm feeling good this morning...I've got my tests t/m which go on for hours! I have to fast after about 7pm tonight. Can you remember if you allowed chewing gum or to brush your teeth? I'll ring and check I think!

Hi L&S - yes I can't wait - never been to Florence before - and a grown up weekend without kids!!

I'm very interested to hear about your tests hellsbelles do you know what tests they do? Fasting from 7pm though - ouch!

she mentioned a 4 hour breath test and a 6 hour urine capture! I'll give you the full low down on it t/m!

Grown up weekends are such treats...let's make sure you are in top, cystitis free, shape for that!

Hells, the oil of oregano is from Deborah, but I was v pleased to get it - an IC woman I know online credits her recovery from taking it. So hurrah for that. There were DEFINITELY some serious gurglings this morning, as a result, presumably. I spent a long time in the toilet [FAR tmi]

I did the breath test too - it was quite pleasant! four hours with a book! I think I cleaned my teeth, but that was it. Didn't have to do the urine test - that's a long one!

Kits, I went to Florence once, for about half a day as a teenager, and I've always longer to go back. I remember it as being absolutely beautiful.

Been feeling good again today, hurrah. My frequency is back to pre-IC levels these days, which is just wondrous. And went to see my divine acupuncture woman who was amazing and said I can drop down to fortnightly appts now as I'm so much better!

Wow - L&S you are doing brilliantly! What a fab day (apart from extended toilet break

Toni gave me a number to call tonight to try and sort out an appointment and it didn't work! I'm assuming she mistyped. I really want to see her - particularly as she helped with your back as well.

You are right - I shall have to go armed with many books. It's rather rare to get an excuse to read and do nothing more isn't it?

Helloa everyone

I phoned today for my msu result and it's grown something, but couldn't get to speak to the doc for the exact results. I'm relieved that it's an infection and that perhaps the antibiotics might get on top of things.

Feeling much better on the nitro and just beginning to wonder how I can prevent another recurrence

L&S, I'm so pleased to read about your progress

I had my first cup of horlicks before bedtime last night and only had to go pee once Simple pleasures eh? I even made it round the high street this morning!

I'm paranoid that it returns, so will have to stock up on some herbal preventatives and gallons of warm water.

hurrah! That's great news. It's well worth ordering the hippy dippy book I have mentioned a few times understanding cystitis as it does go into a lot of detail about how to avoid recurring bacterial UTI/Cystitis

Okay, ta, I will order that I think.

I hope you're feeling better and get some help from Deborah, she sounds really great

I have to admit that I have a lot more empathy for my little old ladies now when they're constantly asking for the toilet

I am feeling much more in control of whatever this is now...this thread has been a huge help to me - I was so scared before!

The more I think about it the more I realise my body probably was due some sort of WTF reaction like this (lots of stress in the past)...now I just have to sort it!

I think it's possible to get on top of things like this, but it just takes time and a lot of research. Advice and help from others is great too. You never know what you're going to find out just by exchanging info like this.

It is a scary thing to have because it's so impossible to get anything done or live normally I've had about 4 months of it on and off, but some people have had it for years

I know - it's something you would never even think of before it happens (if that makes sense!)...but I totally agree that by sharing info I reckon we'll all find ways of controlling it.

Hells - do you want to pm me for Toni's number? I have it. She is a truly wonderful woman - I feel a bit gushy when I think about her! How are you feeling today? Agree about the overdue-WTF - I was looong overdue, when I think about it.

ilmh, I'm so, so glad you're feeling better - and I agree, such a relief to found something's grown! Shows you were right about it being infection. Agree about the empathy too - this has knocked me for six, it really has, and made me feel much more sympathetic to people who are suffering, no matter what with. So scary to have something that impacts on every aspect of your life.

Oof! And with that: to bed!

L&S thank you - but she's resent the number already - alas I saw it too late so I'll try in the morning.

Sleep well!

Good luck with the tests today hells!

It's really positive to hear that you're feeling so good L&S - are you doing a diet that this Deborah lady put you on? How restrictive is it? I'm finding it hard enough not having caffeine, chocolate, tomatoes and alcohol! Still it does seem to be working a bit - I'm not as uncomfortable at bed time.

I've got the Prerelief through the post today so am testing them out with a chili con carne and a glass or two of red wine this lunchtime.

What I didnt realise until I read the packet is that it deals with indigestion and heartburn too - which is another issue I have and am sure related. I had my gall bladder out a few years back and so cant neutralise acid very well and get a lot of heartburn. I had IC well before that though.

Anyway if it cures both I shall be mighty pleased. I shall report back.

Good luck with the tests Hells.

Wow BeenBeta - that's quite a test! Let us know how the Prelief goes.

blimey - you don't do things by half measures do you Beta? I would be happy if it let me have a glass of wine...I don't think I'd dare test the chilli and tomato combo as well!

I really hope it works for you.

My tests took ages but it was in a nice place and I could just read my book inbetween tests. At home t/m I've got to do a bizzare 6 hour urine test! I have to drink some weird concoction, fast for 2 hours, then capture all my urine for 6 hours thereafter. NICE

I've also booked to see L&S's acupuncturist who sounds amazing...I can't wait to see her - I'm still waiting for the referral letter to a urologist so that I can get some further answers to the rest of it though.

kitslano - I'm so glad you are getting some relief from the symptoms...I know what you mean about being good on the diet though..I'm finding it tough too...I use tomatoes in everything I usually cook so it's weird to try and find other stuff to make.

I'm seeing this (hopefully) as a short(ish) term measure to allow my bladder (or whatever is wrong with me) to heal in the hope that eventually I will get back to normality...who knows though?

hells - what are they actually looking for in your urine? Do they test the acidity over time?

So far I'm feeling pretty good - went for a walk round town earlier. Had some twinges but not bad at all. At least the pills havent had any side effects so have just had a couple more and we will see how the night goes.

Hi everyone,

Well, got to speak to another receptionist this afternoon and dragged it out of her that it hasn't grown anything

Also, the symptoms have returned I was feeling so much better, but I think there's something else wrong.

What am I gonna do now?

I've taken some cystopurin in desperation, but nothing else I did was working in terms of the supplements etc. so what do I ask the doctor to do now?

Any advice please, I'm fed up now. I have a walking retreat booked for next month and I'm going with two colleagues, so it can't be cancelled cos we're all looking forward to it

I've been to the loo about 10 million times today and the feeling is still there.

Hey hells, glad the tests were ok! and delighted you're going to see Toni. I really think she's marvellous. I always have amazing days after I see her - today has been great . How are YOU feeling? Do I detect a slight note of a-bit-less-good? Hope not.

Beta - how did the test go?!

Kits - can't lie to you: the diet she's put me on is SUPER restrictive. Essentially, meat, eggs, nuts and veg! But feels totally worth it for me, and she assures me it's not forever. As I'm feeling so much better, I'm happy to stick to it!

L&S - glad you have had an amazing day. I haven't had a bad day - I've really been working hard to not go when I need to (if that makes sense)...so although I have the urge I'm ignoring it as much as poss! Also I stupidly forgot to take food to the test and was starving so had to get something quick...I took a bite and it was very spicy but I was so hungry I thought I'd have it anyway - and so far so good!

Beta - something about leaking guts? I have to drink something and they detect how much comes out in my urine within the six hours. The breath test was about what came up from my lungs?!!!

Sounds like the prelief is doing pretty well...I remember you saying it was usually a couple of hours after eating that you felt bad....so is it longer than that now?

Ilove...we all know exactly how you are feeling...please don't panic. What are you currently restricting on your diet? Maybe if you start restricting again you can get back on an even keel...and then between us we'll work out a plan of action (where are you based?). I really think, from everything I've read, that tackling this head on at the earliest opportunity is the way to go...and seems like people really do get back to relatively normal.

I'm in the northeast.

I'm just restricting coffee and alcohol. I don't eat much red meat and don't eat junk. My sugar intake has crept up a bit lately, but I don't pig out. I don't eat fried food or processed stuff. I try to eat fruit and vegetables, but haven't felt like it much lately due to all this.

I'm mainly eating carbohydrates as I feel miserable. Stuff like cornflakes, toast, tea etc. I try to drink nettle tea. I also drink hot water to flush things through as cold water makes it worse. I don't drink fizzy pop or carbonated water.

I think the odour is coming back too It has to be an infection because my kidneys were hurting two days ago and now that's stopped. The odour had also stopped, but is returning along with the frequency. I think the nitro isn't going to be effective.

I'd rather be in pain than have this. At least you can take painkillers, but with this it's just a case of putting up with it. I feel like I'm going mad now

I think the cystopurin is kicking in now as it's easing a bit. Trouble is, last time I started taking this, the infection went onto my kidneys.

It makes your urine alkaline which relieves the symptoms, but infection makes the urine alkaline as well