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.

sorry - I think that should be hypnosis?!

I think stress is a MAJOR factor - and in fact, I reckon it was the catalyst for me. I have acupuncture with a wonderful woman, Toni Tucker, and she treats me for stress too. She's written a thesis on IC (it's on her website - here's the link to the relevant section of the site, scroll down for the link to the article www.tonituckeracupuncture.co.uk/acupuncture_interstitial_cystitis.htm) - and in the section on causes, she cites 'extreme emotional stress or shock' as the second most significant, after bacterial infection!

In my case, I'd had three years of serious stress - accidental pregnancy, splitting up with DS's father when was 5mo and moving out with DS, as the house was ex-DP's, sharing a room for a year with a non-sleeping child at my wonderful Dsis's, going back to work full time, struggling financially (living in central london as a single parent even on a good salary, which mine is, is TOUGH!) starting a relationship with wonderful DP, who is ace but also had just gone through a complex break-up - you get the picture. In the run-up to getting IC, I was working nights as well as days to prep for a literary festival where I was chairing events - and it was at the festival where I suddenly started getting frequency. I thought it was nerves!! But it didn't go away ... So anyway, in short (ahem ) I'm absolutely sure stress is a MAJOR factor. Acupuncture has definitely helped me, and I imagine hypnosis could have the same effect. I do recommend Toni if you want to go that route - she's just marvellous.

How are you feeling today? I slept through the night too - very exciting!! And feeling pretty good this morning. I think the bit before I started taking steps to address it was the hardest part, mentally - I need to take action immediately on things, very bad at waiting!

I guess the body has to react in some way to a catalogue of events like that! Blimey poor you. But how wonderful that you slept through - bet you feel totally different with a good nights sleep!

My nights are usually o.k. I feel so so today...just a bit stingy (I just know my bladder is there if you know what I mean!). At the beginning did your symptoms come and go like that? I keep hoping that this means I don't have it and it's just a temporarily irritated bladder (are there such things?

No mention on google of something that can just go...it always goes straight to IC!). Thanks for reminding me about Toni...after I get a clearer idea from Deborah about what I'm dealing with I shall certainly see her too.

I have had a pretty bad time in the past (lots of miscarriages (4 had to be resolved by D&C as they were 'missed' miscarriages), incompetent cervix, strict bedrest for 3 and a bit months when pregnant), once off bedrest my back was buggered (!) so lots of pain killers and osteopathy etc...but that was a while back (DD is 2 now) and I felt like things were finally coming together.

My Granny died just before all this started and I did have stress over the dr testing for early menopause (cause of irregular bleeding). I did love my Granny but were weren't terribly close so I didn't link the two...but who knows?

also meant to say how much I appreciate you listening to my insane ranting. I realise I sound totally irrational at times. It just is my mind working overtime

God, that's interesting - I felt like things were just coming together for me too! I've thought about this a lot, and wondered whether it's the same as the way you always end up getting ill as soon as you go on holiday - you body relaxes a little bit and everything falls apart.

And bloody hell - in truth, that sounds like a hell of a lot of trauma in the pelvic area, over an extended period of time. If it doesn't sound daft/upsetting, after all the research I've done into it I'm kind of not surprised your bladder's playing up! What Toni and Deborah have both said is that IC is down to - or an expression of - and imbalance in the body - whether due to antibiotic overuse, a lowered immune system, injury, stress, or a combination of the above. Their treatments are both geared towards rebalancing things - which is why they take a while, but hopefully why they're effective in the long term. Sounds like your body's been through a hell of a lot - I know how it is when you have a small DC and have to just keep on going, but I guess there comes a point where you have to look to yourself and concentrate on your own wellbeing.

Annoyingly I'm afraid my symptoms did just come and go a bit at the beginning - felt like there was always something, but it changed from day to day. The difference now is that I have much more consistency - I can rely on my body again, I know it's not going to suddenly flare up in the same way (which makes a difference from an emotional pov too)

Have to pop out now but will be back online later - keep talking!

you DON'T sound insane!! I went crazy over this - I've had back problems in the past, and IBS for years, and NOTHING has distressed me to the extent this has. There's something so upsetting about a bladder thing - you just can't forget about it, it's so fundamental. I totally understand!

love&S - you are so lovely - you already know me very well - you broke it to me very gently that you had on/off symptoms (you picked up the clutching at straws thing!).

One thing that I'm trying to reassure myself with (and hoping perhaps you and Deborah can advise on) is that IC/PBS seems such a catch all term and used to describe what may be many different issues/levels of severity.

So while we read about the ladies stuck in bed forever, unable to work again and in a constant cycle of pain is there a chance they are getting a different thing?

Also perhaps because of the internet/research we have managed to catch this at relatively early stages before most of the irreversable damage is done? It would seem that a lot of mainstream drs haven't looked at diet in the past so the damage has carried on for patients that haven't heard about it and carried on causing damage without releasing it. Rather like the kind of damage a diabetic would get if he/she carried on eating sugar?

The latest thing I'm using to soothe my restless mind is saying to myself this is just really bad allergy/food reaction that I have to get under control and instead of causing rashes it's making my bladder scream. I don't know why it helps me to think this but it feels better than 'chronic condition!'

Hey Hells,sorry I'm only just back - been admiring friends' babies for the afternoon

At last! I can say something positive and good. Both Toni AND Deborah said that the earlier you catch this the better - it hasn't had time to do any serious damage, so all that's needed is to rebalance the body and calm everything down, and crucially try to pin down why it happened in the first place, so it doesn't happen again. So whatever it is, you're doing exactly the right thing by panicking and getting on top of it!

And i think you're right about it being a catch-all term. I guess the most helpful thing is to think of it like a symptom: just as you might have a sore throat for all manner of reasons, from a cold to throat cancer, so your bladder might start hurting for all manner of reasons too. Just have to work out what yours is!

nothing better than babies (that you can give back when it comes to the sleepless night bit )

Thanks L&S...that really does help...knowing I probably have caught whatever this is early so for once my googling obsession may have paid off.

Hey Hells, how're you feeling today?

Hi L&S...not too bad. It's my last day of AB's and I'm scared it's all going to come back as it was at it's worst once I stop (I read somewhere that it's the anti inflamatory properties of AB's that can give temporary relief)...but maybe I should think positively for once!

At the moment I'm trying to find the right medical dr to go to. The gyne I'm seeing is lovely but it's not his specialist subject (he suggesting going straight for the cysto hydro which sounds a bit drastic) so I really want to change.

I found this chap through google...jeremy ockrim - I'm hoping he's covered by my insurers (lots of phone calls t/m)! I like the fact he mentions alternative therapies as well. May I ask who you see (and if you would recommend him/her!).

Glad you're having an ok day! Thoughts: there are lots of anti-inflammatory stuff you can take to get you over the transition - things like marshmallow root or comfrey tea - and actually I'm sure whatever else Deborah says, she'll suggest some of the anti-inflammatory herbal tea she makes. Just straight cammomile is good I think. As littlemama said, the alkaline diet is anti-inflammatory too, so maybe worth sticking to that for a bit. On the other hand, maybe the ABs have worked!!

TBH I gave up on the medical root quite quickly. My urologist was Dr Godbole at the London Independent Hospital, and he was very nice, but couldn't really do or say much - and sent me straight for the cysto-hydro too (and did a urethral dilation which I didn't want, and which didn't help!!). One very important thing - if you do go for the cysto, which I think can be helpful just to rule everything else out, ask them to take the catheter OUT before you wake up. They left mine in and it was absolutely horrid - the only really bad part of the experience. I think they mistakenly think it'll help, and it really, truly didn't!

That chap does sound very nice, though, and sensible - maybe try him?

Roll on Friday, huh? Waiting is BY FAR the worst part of it. Couple of sites I found that were extremely reassuring: Matia Brizman in LA on the icama site (she's basically the world expert on treating IC through alternative means - has loads of hugely positive success stories, and even takes on UK patients by phone, though you have to fly out for one appt with her. I'm keeping this as my backstop!!). And Carin Willis's blog www.icpbssupport.com/index.html is good, too. Hope these help!

good grief: ROUTE, not root.

Have you tried waterfall d mannose?

L&S - that's very helpful as ever! Thank you so much. Have you found a good supplier of the marshmallow root tea? I checked Holland & Barrett - no luck there - I'm assuming online is best but I'm a bit worried about dodgy suppliers!

I had the Maria Brizman back up in mind (I'm never one to settle for no cure!)...let's hope we don't need it but who knows, maybe we could go at the same time?!!! Plane journey would be interesting (I think for teh first time ever I would request seats by the loos!)

NOddy- I have ordered that but it hasn't arrived yet...have you tried it?

My sister and I have both had great results with it!

Hells, you're on! If all else fails, plane to LA with seats by the loo.

I got my marshmallow root from a supplier in glastonbury - annoyingly can't remember the name as I've switched to deborah's tea now.

Interesting everyone saying they've had good results with d-mannose - noddy, did you are your dsis have interstitial cystitis, or recurrent bacterial?

Wish I'd had this thread when I was first diagnosed. I'm feeling so much better, but like the idea of having lots of back-ups!

you AND your. Ahem. Braindead today - and I ought to be writing a book review, and cannot seem to get going on it. Seriously considering turning on channel four to watch the simpsons. Hmmn.

I have recurrent and she has interstitial although I suspect I have that too but was introduced to WD mannose after a nasty bacterial.Before that though I had repeated irritation without any growth from the urine samples so am assuming that is IC. My sister has suffered for years though and is finally free!

wow - that's really encouraging! Wonderful for your sister if she's had years of it. I'll definitely talk to my herbal woman about it at my next appt (have an almost superstitious fear of doing anything she hasn't sanctioned!).

oh er - what did you say keepoutofit?!! I hope it wasn't mean.

Noddy- wow - very enouraging. I can't wait for mine to arrive now. It should be any day (along with Aloe Vera - I am possibly overdoing the search for cures )

L&S - it sounds so funny saying 'herbal woman' like you have a witch looking after you!

DH said the other day - do think in the past this is what ladies described as 'I'm having trouble with my waterworks'...I wonder if it is?! People just don't talk about it in RL do they? And it seems, along with overactive bladder to be more prevalent than you would have thought.

This thread is proving such a relief to me as well. The forums that are specific are good but also quite terrifying and because the main one is US based it can be a little frustrating.

I just did a two hour car journey and it was o.k! Don't know if it's me being sensible with the diet, or that I'm stressing less about it (thanks to you!) or maybe the AB's? Who knows. But I'll take it while it lasts.

Hells, I TOTALLY think that! I reckon loads and loads of people have this, and it just goes undiagnosed - or is labelled 'women's problems' and therefore underresearched/resourced. It tends to happen after children, too, so falls under the umbrella of 'crap stuff that happens to you after you've had kids that you just have to put up with'. Annoying!

GREAT news on the car journey meanwhile! Fingers crossed for the ABs. Maybe if you start on the d-mannose everything will stay under control!

I'm dying to know what keepoutofit said too. I'm thinking "Stop moaning, women, and get yourselves some nappies!"

- I suspect/hope it's a little more innocent than that!

Also - I do feel lucky that my voracious googling (and yours too)...got answers quite quickly (even thought they were NOT the answers I wanted). I think a lot more mainstream coverage is needed soon - as I hate to think of people going years and years without a diagnosis.

I'm holding out for oversensitive bladder at the moment - never thought I'd wish for that!! But time will tell.

We have just had an offer accepted on a new house so stress levels will be tested to the max! Thank goodness Deborah does anti-anxiety stuff.

Horrifying, isn't it? Fully intending to write a piece on it once I feel confident I'm out the other side, but over the past four months I've felt so lucky that a) I have access to the internet, b) I'm educated and confident enough not simply to accept what the dr says and c) have enough money (just) to pay for private complementary healthcare. Oh, and d) that I live in London, with easy access to that care. Hate the thought of people suffering for years, and not even knowing what it is they're suffering from.

And hurrah and yikes to the house offer! Whereabouts are you moving to? How exciting/stressful. I'm in the process of trying to work out where in London I want/can afford to buy a flat for DS and me so that he's settled somewhere before starting school, and also trying to establish whether DP will be moving in with me (he's wrestling with complex ex-p issues of his own). Plus, DS has chicken pox, work are being tricksy about me taking more time off, and I have about three things I need to write up (one of which I'm supposed to be tackling now!). All pretty gnarly; thank heaven I'm feeling a bit better, or you'd find me sobbing under the duvet. Why does everything always happen at once?!