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.

Oh Kits, how grim - those vomming bugs are horrendous. Not surprised bladder's acting up. THere's no chance it might ACTUALLY be cystitis is there? Unlikely, I know. But maybe worth trying dmannose just in case it's bacterial?

If it's not - one of the best things I read in the catherine simone book was her mantra of 'it's probably a combination thing'. If you're having a flare, it's probably a combination of circumstances - stress, diet, and so on. Actually, there's a lot of evidence to suggest that environmental stuff - washing powder, toilet roll, cleaning products etc - can affect IC. Maybe if you've been at it with the bleach all day, that may have set you off?

Thanks L&S - I don't think it's cystitis but good idea re the D mannose I had slipped on that a bit cos was feeling ok - will try to be more conscientious. It cant do any harm.

You're right about the combination thing - which makes it so much harder to control, annoyingly!

Anyway DD asleep since 5.45 so I am off to bed in anticipation of a disturbed night!

Night all

Good luck for the night! and try and rest up as much as you can tomorrow- with luck the vomiting will be over and she'll want to collapse on the sofa!

morning all. Hope everyone's bladder is behaving! I've had a few iffy days. No pain but just general discomfort and frequency. But I still just don't know what I'm dealing with. I really don't know whether this is IC or just a sensitive bladder (or are they one and the same!)

I'm going out tonight and I'm going to risk a glass of wine Wish me luck!

Kits - I really do think the dmannose has some sort of calming effect on my bladder - I hope it does the same for you.

Hello everyone, hope you are all well.

My cystitis is back I don't think I have any infection because I don't feel sick or have a headache, but I'm peeing every five minutes and have bladder pain again.

Dunno what to do now. Back to the GP on Monday for some tests/examination.

Does anybody know if there's any medications that can be taken to relieve the symptoms? I'm booked to go on a 7 mile walking retreat with two colleagues next month and they're really looking forward to it and I honestly don't know how I'm going to cope with being like this

What foods/drinks should I be avoiding if anybody can recommend? I don't drink alcohol at all, but do have weak tea/milky coffee, milk, water and herbal teas. I can't be bothered to take my herbal remedies because they don't seem to help.

I was taking sodium citrate, but it just tastes nasty and I don't know whether it's doing any good.

I can't live like this. I can't take the kids out. I'm meant to be taking ds1 to a concert tomorrow, but don't think I'll be able to go.

Oh ILMH. SO sorry you're feeling crappy. The first thing you need to do is calm the pain and frequency. Can I suggest going on a SUPER strict diet to see if that helps? I mean really strict. Take a look at this one - try following list one www.icama.org/iaic-diet

hopefully this'll calm things down enough that you'll be able to walk next month, even if you need to pack some odd food! Basically, you're removing any possible irritant from your diet, so things should be able to calm down.

On top of that, try talking fish oils every morning (not fish liver oils; apparently they can irritate) to calm the inflammation - whatever's causing it, there's clearly inflammation there.

WAter-wise, Evian is the best.

Would also recommend healing baths (sorry - that makes me sound like such a hippy, but they've really helped me - I have them whenever I'm feeling bad). Half a cup of bicarbonate of soda, a couple of drops of tea tree oil, a couple of drops of lavender or rose oil. Bicarb draws the poison out of your skin and soothes things.

For immediate relief, try a tsp of bicarb in water (but don't have this too often, it upsets your alkalytes or somesuch - fine for a couple of days though).

REally hope some of this helps.

ilove - sorry you are suffering so. Although I'm not having the same symptoms as I was before I understand exactly what you are going through.

L&S gives great advice as always. I would 2nd the diet being the key thing. The only herbal tea I drink right now is peppermint and I avoid all caffeine. It's hard but it does make a difference. The link L&S gave you is the one I followed when it all kicked off - and it did make a difference after all while. Suddenly things start seeming more manageable.

PS - I just had one of the healing baths as prescribed by L&S (this morning) and it does help.

Thanks so much for the suggestions. I have bicarb and lavender for the bath and I also have peppermint tea. I will also read the diet link.

I'll do anything to try and make it feel a bit easier. We've had this walk planned for weeks and I just want to feel something resembling normal again.

Does the peppermint tea have to be made with Evian as well, or is boiled tap water okay?

Funny you should ask about the tea - I actually don't know and was pondering just this morning. Have to say i've been going with tap water on account of not being a gazillionaire and seems to be fine, but if you're feeling really bad and want to be cautious maybe start with Evian?

I think you're right: just throw everything at it for now. Get things under control in the first instance, then think about dealing with it long term when you're feeling better. How are you feeling this evening?

And hells sorry you're feeling a bit ropey too! I've had a really good week, which I hope is encouraging rather than irritating - just one bad day on thursday.

Rest up tonight, everyone xx

ILMH if you are desperate you could try an OTC antihistamine- called ceterizine- sold for hay fever.

I take Atarax which is a version of this, but only available from the dr ( or internet).

I don't knowif you have had any support from your GP- they cannow prescribe amitriptyline for bladder pain/frequency.

it is an AD but in does under 75 mgs a day it calms the bladder nerves and also "dries you up" a bit.

It can be prescribed without any formal diagnosis of IC.

If you google you should find the report/research done in Austria a few years back.

Thank you. I have some Cetirizine in for my ds1 who has allergies.

I'm now on the Evian and off all things related to caffeine. No more sugar either. Bladder isn't so painful and the stinging has gone. Just the frequency now. Am going to give the concert a miss though.

I'm not sure about taking amitriptyline because I'm already taking an SSRI and they might interact. I'll ask the gp about it tomorrow.

hellsbelles Hope you're feeling better today. Hope everyone else is well.

Hey ILMH, really glad the pain's subsided. For me, the frequency took longer to resolve, but I think by the time you go away it should hopefully be a bit more settled. I know people have had very good results with amitriptyline, so I reckon def worth raising with your GP. And I reckon def take it easy today. Hot waterbottles also v helpful and soothing.

That sensation of needing to go to the loo all the time is horrendous, I know. Really hope things calm down soon.

Hells and cabbage, how you feeling?

xx

hi all,Ilove - so sorry you are suffering. I hope the hardcore approach is helping.

L&S so glad you've had a good week.

I think my false sense of security caught up with me. I had a glass of wine last night and I've had a pretty rubbish day. It is just the feeling of needing to go all the time and it really gets me down. I don't have any pain though and I know that is lucky.

I think I need to get stricter with the diet. I'm sticking to the IC one but not quite doing the Deborah one. If I carry on like this I will probably have to do her version. But I have my acupuncture appointment t/m so hopefully that will help.

Hello everyone again.

It's gone!!!!!!!!!!!

The frequency is gone and I have been feeling normal since last posting! I can't believe it. For the first time in weeks I have gone over two hours without needing to pee! I think it's cutting out the tea/coffee that's done it. I've just been having Evian, peppermint tea and I also read that redbush tea is okay, so I've had that too.

God, I hope this lasts and I've found out what the trigger is.

well done ilove...that's fantastic news.

ilove - hope you are still doing o.k? I'm marginally better today but still quite uncomfortable and fed up. i have my appointment this afternoon so really hoping that helps.

sorry to hear you're having problems hellsbelles. I found acupuncture very good when I had it for stopping smoking and some pain.

I am okay so far. I have been out to the shops and only went to the loo once. I have bought some chicory powder to have instead of coffee.

Have you noticed any triggers?

Sorry you aren't feeling good Hells. Hope the appointment this afternoon helps. I have gone back on the antibiotics for 6 weeks - since this was what was diagnosed as the issue last time I figure I should at least give it a go again and if no joy then start pursuing a clearer diagnosis.

Hey all!

ILMH - that's GREAT news! I'm so thrilled for you! It's so wonderful when it buggers off, isn't it? I keep thinking of that Emily Dickinson line - 'After great pain a formal feeling comes' - everything's suddenly blissfully still and quiet. Long may it last.

Hells, really sorry you're still feeling medium. Hope you had a good appt with Toni today. I tend to feel the benefit the day after, so don't worry if you don't feel instantly better. It also builds up, so judge your progress on how you feel after session four, rather than two, I reckon. Also, if childcare's a nightmare for you, do let me know! I'm dead serious - we're near-neighbours, I have a DS of a similar age to your DD (I think!) and if you need someone to mind her for a couple of hours while you go and get needled I'd be happy to - I know how important it is!!

Kits - how are the ABs working out - any joy?

I've had a great few days, but am ovulating today so everything's a bit sore. Definitely a hormonal element for me ...something else to add into the mix ...

ilove - so glad it's still working and kits, fingers crossed that solved it.

L&S - you are so very kind. I think we can muddle through and Toni can do the next one in London but thank you so much for offering. I'm not quite sure how I did it but I managed to make it take 4 and a half hours! I left at 2 for a 4pm appointment (getting to paddington took 45mins) and didn't get back till 6.15ish! Yikes!

I feel a lot better this afternoon and the treatment left me very woozy and relaxed. Toni is sure it's mostly back problems for me with some overactive bladder thrown in for good measure. She wants me to do the akaline diet rather than Deborah's strict one...but I'm going to do Deborah's as much as poss (L&S I need inspiration! What the heck do you have for lunch on that diet?)

Hey Hells - really glad you're feeling a bit better! The treatments are super soothing I think - tho I do remember after my first one, the next day I had a really intense reaction - felt flu-y and achey and could barely walk! Only lasted a day, then was fine. I gather it's what's known as a healing reaction

Lunch! I tend to make double of what I'm having the night before, and eat it for lunch the next day. Sometimes make beef stew and take in a flask (v 70s-chic!); often have cooked chicken/fish with salad (that's nice and easy). When out and caught short, I've tended to ask for caesar salad without croutons/cheese/dressing, or have had steak and green salad ... not totally straightforward, but manageable ...

Do let me know if you ever need help when you're going to see Toni - the offer's open-ended

L&S I can see I am going to have to get organised! I am confused by some of Deborah's notes...she lists a scant few herbs on the bit that tells you which herbs you can have...but then on the garlic mayo recipe there are tons you can use (that aren't mentioned on the herb list)...are you aware of any herbs that must be avoided?

Also I have always made my stews with booze ...do you have a good recipe that doesn't rely on that?! I notice she says no thickener - I have found a gluten free thing called gram...I wonder if that will be o.k (I'll check with her).

BIt of an up and down day today....quite frequent but not terrible...but very calm (thanks to Toni?) and determined to get back on track.

morning all...hope everyone is having good days. I had a bit of a rubbish one yesterday - which bizzarely co-incided with my first day of being super strict on the diet .

However I've woken up feeling pretty good today so hopefully this is the start of wee free days (well a few wees, just not too many)

ilove - is the caffeine ban still making a big difference?